15 Years of My So-Called Sarcoidosis Life

Saluting all U.S. soldiers today

2009-11-11T09:00:00.011-05:00

Technically speaking, the tens of thousands of men and women serving in the United States armed forces are not veterans. They are active duty members of our Military Services branches, the Army, Navy, Air Force, Marines and Coast Guard.

I want the members of each and branch to live to veteran status, but we all know the reality.

Still, Veterans Day is the perfect day to honor the men and women who have lost their lives or are risking their lives defending this country.

We are safer because of them. It really is as simple as that.

A week ago, we learned that there are no safe havens for soldiers abroad or at home. I appreciate the sacrifices they have made and will make and I want this government to do everything possible to ensure that safety measures are maximized so we can avoid another Fort Hood incident and so more soldiers can live long lives after service.

Stay safe.

Benefits of owning 'the beast'

2009-11-09T09:00:00.011-05:00

(Hello there. I trust you had a good weekend.

I want to share with you this solid New York Times article about corticosteroids, the synthetic versions of the natural chemicals produced by the adrenal glands. Prednisone is the corticosteroid I am taking to manage my sarcoidosis symptoms. The drug works, but the side effects can be as bad as “cure."

And now, a long overdue ode to a family member assisting me in my healing…)

The beast is eating my foot.

Well, more like…a soft gnawing…a gumming. He could crush my left foot if he wanted, but his tail is wagging so hard that I know he never thinks that way.

He just wants me to keep roughhousing with him, so I do. Until he turns on his back and I can rub his belly.

He is Tobie, my family’s Golden Retriever. Tobie plays a big role in my recovery from sarcoidosis.

Pharmaceuticals control the sarcoidosis that tries to ravage my heart and lungs. My family keeps my spirits buoyant. Tobie just makes me warm inside.

Things are looking up, but these are still stressful times. The dog, along with writing and exercise, help reduce stress. Much has been written on the benefits of owning a dog or cat.

I hear the “thump, thump, thump” of his tail against the floor in my parents’ bedroom when I wake up in the morning. He just lays there and beats the carpeted floor with his tail, letting everyone know that I am up and that he is happy I am here. He brings me his favorite squeak toy. He loves me to take his leash off after we do a round in the park. I then fold it and place it in his mouth so he can carry it home.

Tobie actually smiles a crooked grin when he plays. My mom half-jokes that he might have had a micro stroke. Could be. The crocked grin comes from somewhere.

Tobie is seven years old. He is the color of late autumn leaves and he is developing a white mask. I am noticing more and more white hair in his fur. He is getting up there, so I enjoy time with Tobie and am thankful my parents added him to the family.

At night, I like to find quiet moments where it is just the two of us. I cradle his head in the palms of my hands and message his golden face until he breaks into that crooked grin.

Then he farts. Whoa! I'm just gonna go to bed.

Obama's first year

2009-11-06T09:00:00.004-05:00

(Back to health matters on Monday. Today, a little something about the political scene)

A year after the election of President Barack Obama, CNN interviewed people about what they were doing when they received word of the historical event. The interviews were tied the debut of a documentary on HBO Tuesday that chronicles what is characterized as Obama’s improbable rise.

Election Day 2008, I was busy coordinating Election Day coverage for the Chi-Town Daily News. I was editing and posting stories from full-time and volunteer reporters who covered city races and the presidential race.

We posted what seemed to be dozens of vignettes and anecdotes about local races and the mood of the electorate. At the end of the night, I gathered the best and weaved them into a lead story. I was proud of the newspaper and staff and felt honored to be working in Chicago the night Barack Obama gave his victory speech in Millennium Park.

I appreciated the moment and savored it. Obama won big. He had a mandate.

But he ain’t using it. Instead of forging ahead with the people who got him into the White House and implementing the sweeping change he promised, he has sought partnerships with people who would shout him down during a presidential address. People aligned with a news network that reports false stories about him.

I want the president to be more decisive. I want him to realize that he is fighting against the status quo and the supporters of the status quo won’t give an inch. They have nothing to benefit from ending war, reforming health care, really getting the economy on track, equality.

Obama and his supporters should move fast and be deliberate because the people who lost the White House want it back and are willing to do anything to get it back.

Question is, can Obama and his supporters do what’s right for the nation and maintain a majority in Congress in the 2010 mid-term elections and then re-claim the big house in 2012?

Ducking viruses, caught by bacteria...

2009-11-04T09:00:00.005-05:00

(Updated!)

Dry, racking cough. Slight fever. Fatigue.

I am sick again.

Yeah.

Well, this is putting a crimp into hitting the gym. I am resting, drinking plenty of fluids, taking azithromycin, prescribed Tuesday just in case bacteria that could cause strep throat, bronchitis, pneumonia or whatever is trying to establish residence in my body.

My family and I have been ducking viruses only to get caught by bacteria. They are different.

Mom got sick a couple of weeks ago, followed by Dad. Guess I should have expected that I would next. I thought I had dodged the illness bullet after spending the night with my mom and grandmother in an Elizabeth, N.J. hospital emergency room and not getting sick.

Two impossibly drunk men on gurneys flanked Gram’s tiny exam room. Those men were ruddy in complexion, disheveled, and bombed out of their minds. Looked like they had been through hell and back. I tried to hold my breath every time I walked past them.

Also took Gram to a couple of doctors’ appointments and sat amongst some folks who looked like they were expecting visits from the Reaper.

“It’s too late for you,” I half-expected a nurse to say to some of them. I am just grateful we all made it through that day.

This is the second time I have fallen ill since September. Back then, I could barely move for two weeks. I was weak, sore, had a nasty cough. It was rough. I am taking prednisone and methotrexate to suppress symptoms of heart and lung sarcoidosis. The drugs work by suppressing an immune system gone haywire, but that also leaves me vulnerable to all sorts of nasty infections the body usually fights off without problem.

We are in the process of tapering off the drug, but it is unclear how when we will be done. We’re still at 30 mg of prednisone a day. I want to cut it in half if possible and see if that does the trick. Ultimately, I want off these drugs and everything prescribed to deal with side effects.

Until then, my internist advises me to stay away from crowds. It is a microorganism jungle out there. The nasty ones have plenty of places to lurk. Let us start with the hands of food handlers and cashiers, which can be fleshy petri dishes teeming with all sorts of nasty organisms. Sometimes, those employees are one in the same – and many do not wash their hands after handling money or before they make a sandwich.

Grabbing a cup of coffee at the local 24-7 store? Everyone in the world has touches the cups, stirrers coffee pots, sweeteners. Coughs and sneezes on them. No one washes their hands before touching them. Yuck.

You have to be careful out there during the cold and flu season. Doctors see dozens of sick people and somehow maintain their health. This is how they do it. Good luck out there and be well.

Meanwhile, I’ll kick back and follow the doc’s and my mom’s advice. I want to get well enough to take my grandmother to the movies soon.

One man's war on obesity

2009-11-02T09:00:00.003-05:00

OK, New Jersey property taxes are the highest in the nation. The state’s unemployment rate is soaring. Urban decay is unprecedented. The gubernatorial race focuses on…the girth of the Republican candidate.

Democratic incumbent John Corzine, GOP candidate Chris Christie and independent Chris Daggett are scrambling to hit the 21 counties of this state in an effort to sway voters their way. Neither man seems up for making New Jersey a better place for all. They offer empty sound bites and little detail, and the press is not pressing them for more.

In fact, in the past few days, the focus has been on Christie’s fat. So let us go there for a sec.

Yep, the man is fat. He will not reveal his true weight – on the Don Imus Show this week, Christie joked that he weighed 550 pounds. He stands about 5-foot-10-inches tall. Images of Michael Meyers’ Fat Bastard come to mind.

However, this is not laughing matter. Christie would fall into the category of obese. He will not publicly tip a scale, but he appears to be more than 20 percent over his ideal weight. That ideal weight must take into account the person's height, age, sex, and build.

Christie is not alone: one-third of Americans are overweight; more than 20 percent of us are obese.

The reasons for this range from overeating to not exercising enough to antidepressants to corticosteroids to…just check out this link. Also, being overweight is liked to so many illnesses, including type 2 diabetes, heart disease, etc.

But there is no need to feel overwhelmed, my fellow Americans. We do not have to take this fat thing sitting down. We can fight back.

We can eat better, exercise re-evaluate our lifestyles and choices.

For some of us, there might be things in our background that are difficult to overcome. Still, we can reshape our bodies, health and destinies.

Back in March, I could hardly breathe because of cardiac and pulmonary sarcoidosis. Today, I can walk a few miles without feeling as if I am going to pass out. I want to be able to do more. Specifically, my goal is to get off every freaking medicine prescribed to me in this war against sarcoidosis.

So I am going to hit the gym. I have gone as far as I can with the makeshift gym in my basement. And while the trails of the Pine Barrens still call…I could use a little climate control. Some A/C.

My fellow Americans, I theater for my war will be inside. Rows of shiny dumbbells and barbells and Stairmasters, elliptical and treadmills will be my weapons.

The immediate goal is to get through the challenging holiday season. I plan to maintain my weight through the horrid holiday season of temptation and inflation - of the mid-section.

The ultimate goal? Lose….quite a bit.

I say 50 pound, but I need to weigh in and then set a goal. I’ll share with you after the weigh in. I will not be shy about the weight because it is a temporary condition as far as I am concerned.

Thank you for your ear, New Jersey, America. Good night. And God bless the United States of America.

2012 likely to be just another year

2009-10-28T09:00:00.006-04:00

(Greetings. I like to write about things other than sarcoidosis, so I wrote this little piece about the 2012 phenomenon. I'm guessing we'll be here after the Mayan calender winds down. Check it out. Friday's column will be health related.)

People are excited about what is being characterized as the ancient Mayans prediction of the end of the world on December, 21 2012.

Wow. There are only three years left to get all affairs in order. Tick…tick…tick…

And The End will be quite the spectacle, at least according to the trailer from the movie “2012.” An ensemble cast including John Cusack, Danny Glover, Amanda Peete, Thandie Newton scramble to survive the Apocalypse.

The End has never looked better than this. Check out the color of the molten lava! Now, that is red. Pass the popcorn!

OK, yes, that is silly. Truly, I do believe it will end one day, but not necessarily on Dec. 21 or Dec. 22 of 2012. Might be earlier, might be later. We won’t be sitting around watching movies when it happens, either. We will be too busy ducking falling buildings and bridges, searching for food and shelter and steady ground, praying, stuff like that.

A 2012 industry that feeds on fear, desperation and misinformation is churning out books and tapes explaining why the end is near, what it means and, in some cases, how one can benefit! Don't share water or food or shelter in the final hours, my friend. Clock that last dollar until the bitter end. Profit in the final minutes even though you can't take it with you.

The ancient Mayans had a culture that included advanced writing, mathematics, astrology and a Long Count calendar that tracks more than 5,000 years and resets at zero. That calendar was discontinued by the Spanish after the Mayans were conquered.

Scholars argue that for the ancients at the end of the cycle would find reason to celebrate, not to fear or lament. The doomsday scenarios so many are trying to sell these days are spawns of ill-informed or wrapped minds. Or just a chance for many people to make a fast buck.

Think: If the Mayans had the ability to see into the future, don’t you think they would have spotted the Spaniards and uncovered the plan for the demise of their culture? Don’t you think they would have tried to do something about it?

Winning an important battle

2009-10-26T09:00:00.000-04:00

My heart is getting better. There is no need for an implantable defibrillator.

Oh, Happy Day! Really, few words describe the mix of relief and joy I am feeling. This song actually sprang into my head when I got the news Friday, and I'm not really a gospel guy. Click on the link and enjoy. Then come back and read the rest, OK? Thanks.

The test results show evidence that my heart muscle has improved since the last echo back in March when I was diagnosed with sarcoidosis. Back then, my heart was so weak that a cardiologist at Northwestern Medical Center wanted to install a defibrillator. I decided to try a pharmaceutical regiment, exercise, got serious about quitting smoking and other lifestyle changes. All that is paying off.

I am winning a battle, in a long war.

“I know they were talking about defibrillator and stuff like that, but at this point, you do not – I repeat - you do not need anything like that at this time.”

The cardiologist told me to keep with up with my heart medicines - carvedilol, lisinopril, hydralazine and hydrochlorot. He also said he would speak to the rest of my docs about reducing prednisone I am taking to control sarcoidosis.

I am excited. I know healing takes a while. I have tried hard not to give myself deadlines (One to two years! I can't help it!) and I still have a ways to go. But this is a significant development. I am excited about it and relieved. For the past eight months, I have been wondering whether sudden cardiac arrest would claim me and what it would do to my family. I thought long and hard about having the defibrillator installed. I came very close to asking for the procedure in August when I moved back to New Jersey.

However, I held off because I believe in the human body’s ability to heal and my ability to overcome. I believe that God helps those who help themselves. I am thankful to my family and friends for helping me get through these challenging times.

I’ve a ways go: Sarcoidosis is still affecting my heart and lungs. When - will - it go into remission? What will a CAT scan of my lungs, to be done in late November, reveal? What organs might it strike in the future?

What is the correct dosage of prednisone and methotrexate that will continue to control sarc without dangerous side effects?

Will I ever get off of these pharmaceuticals for good?

That is my ultimate goal.

I don't take this win for granted. It will fortify me for the challenges ahead, and I know they are plenty. I am ready for them.

But today, I celebrate winning a battle.

Hustling to get help during moment of clarity

2009-10-23T09:00:00.010-04:00

Praise God. Gram gets it.

“Tell your mom that I know I may have a problem…Alzheimer’s…and that’s being checked,” she said to me Wednesday after I called to check on her. This was after the family - including my mom! - took her to the doctor. “We’ll, at least it is not communicable.”

Wednesday, I knew I was seeing glimpses of my old Mac. However, Saturday through Tuesday afternoon, Dad, uncles John and Art and I have been wrestling with my grandmother while she was in the grips of dementia or Alzheimer’s disease. And its grip was tight.

She's back right now and we're taking advantage of it; hustling to get her help during this moment of clarity.

Praise God she gets it. Today. Who knows what tomorrow will bring.

We got concerned Saturday when Gram could not dress or eat herself and could not remember basic things, like her children’s names or the day of the week. Gram's disorientation and agitation increased in Lakewood. She began taking out her frustrations on my mother, who had done nothing but give up damn near every weekend for 30 years to do Gram’s bidding.

I was incensed. I am taking prednisone and methotrexate to treat sarcoidosis and one of the big side effects of prednisone is mood swings.

These days, I am always on the verge of blowing like a volcano. I have chased down drivers who pushed me along in the slow lane of the Garden State Parkway, yelled at slow store clerks and people who cut me off in line. Most times, I am able to hold my tongue, but it is hard. I fight the urge to smash to bits the contents of rooms - waiting room, public bathroom, and my bedroom, whatever.

As I said, I am good at keeping it concealed. I know the rage is pharmaceutical induced. I do not usually go around tearing up stuff – and I do not want to hurt anyone.

However, I am protective of my mother and feel the need to shield her from her mother, who is trying to beat her down verbally. That just is not happening on my watch.

But I catch myself. We are dealing with Gram but not dealing with Gram. She is in the grips of one of the foulest of diseases and she is afraid. Afraid of being alone. Afraid of the future. A couple of months ago, she told me that she was not afraid to die but afraid to live.

So I sheath my claws and look for a way into Gram’s addled mind.

I see it when she tells me to tell my mom that she knows that she needs help.

We had a conversation about it Wednesday after visiting with her primary care physician. For whatever reason, he was able to talk to her about dementia and she listened.

“The doctor was trying to tell me something. Everyone is trying to tell me something. I just don’t want everyone to know. I can get help for this. At least it is not communicable.

There. A joke. That is my Gram fighting back. I reassure her that we, her family, are only here to love her and help her.

Meanwhile, we are working behind the scenes to secure assisted-living and other services. We are also considering having her prescribed a medication to alleviate symptoms; I am scheduling some doctor’s appointments first to rule out anything physical.

Sunday, Gram declared that she had a shooting pain in her left arm and demanded to see her doctor. It was a ploy to get out of our Lakewood home and to get back to Elizabeth, back to familiar territory. It worked. We could not ignore her complaint so my mom and I loaded Gram in the SUV and drove 45 minutes north to Elizabeth (she was not having a heart attack, so…) and Trinitas Regional Medical Center.

After blood and urine tests, a CAT scan and thorough exam, the emergency room doctor said she was physically fine but was exhibiting signs of dementia and needed to take her high blood pressure. My grandmother would have nothing to do with the diagnosis even though she could not remember anything from earlier in the day.

Gram is 83 years old. She stands 5-foot-three-inches tall. She was physically strong enough to wrestle with a nurse in her 20s that was trying to help her sit on the gurney. She was strong enough to shove pills at the nurse after refusing to take them. The nurses at Trinitas were great. They exhibited the patience of Job with my grandmother.

I am glad Gram taught me the story of Job. I have to do the same.

...Ladybug, Ladybug...

It's strange that while all this stuff is going on with my grandmother, I have noticed the swarms of ladybugs on windows and in front of doorways this Indian summer. In fact, I had to fight through what seemed like scores of ladybugs to get into my grandmother's condo complex this week.

"What's up with all the ladybugs," I asked one of the maintenance men, who was sitting in the lobby and appeared to be staring at the little red beetles and a leak that was dripping from the second floor.

"Oh, I just noticed them," the man said. "Look at that..."

The man overseeing maintenance at a hi-rise on Pearl Street in Elizabeth, N.J., is clueless. I remember that ladybugs are one of my grandmother's favorite animals. She even has ladybug broaches. I was taught they are "good" bugs, a gardener's friend, feasting on aphids and other creatures harmful to plantings.

I can't count the number of insects that I have killed in my lifetime, but I am pretty sure I never harmed a ladybug, specifically because of Gram.

I walk past the custodian and head back to my grandmother's unit, trying to remember the old nursery rhyme she sang to me and, I have learned, to my mom.

Ladybug! Ladybug! Fly away home. Your house is on fire. And your children all gone. All except one, And that's little Ann, For she crept under The frying pan.

My Gram was sitting in a chair and singing that song when I left her on Wednesday.

Senior mental distress hits families hard

2009-10-21T09:00:00.000-04:00

My family is having my grandmother evaluated by her doctors. She is exhibiting signs of dementia or Alzheimer's disease.

If my Gram has either, she is not alone: 3.4 million Americans aged 71 years and older, almost 14 percent of the population have dementia, according to a 2007 study by Aging, Demographics, and Memory Study (ADAMS), funded by the National Institutes of Health. And 2.4 million, 9.7 percent, have Alzheimer's disease. The study is described as the "population-based study of dementia to include people from all regions of the country."

No one, the person with dementia or Alzheimer's, or their familial caretakers want to be in this club, which is growing.

I have been back in New Jersey for almost three months and spent quite a bit of time with Gram. She was slower and more forgetful that I remember, but I did not see this coming.

I drove up to see her Saturday. My mom advised me to just go food shopping for Gram and get back on the road to Lakewood to avoid the second round of the nor’easter that hit the region this weekend.

As I drove up, I thought about taking Gram out lunch or maybe a movie just to get her out of the house. She had not been out much since last Wednesday, the last time I visited her. I took her to the Barnes & Noble in Clark, bought her a decaf and soup and worked on a blog posting. She seemed fine, reading a magazine article about the tomb of King Tut, people watching.

I was unprepared for what I encountered Saturday. I could not get her to open her door. I could not get her to get dressed. She did not know what day it was or what time of day it was. I had to hand feed her a hamburger because she kept mistaking a napkin for the sandwich. I had to feed her fries because she kept nipping at her fingers.

I was taking care of Gram Saturday because my mom had bronchitis. I had to call my mom for help. I was way over my head.

“I’m sorry if I am a bother,” Gram said to me after my parents and I made the decision to bring her to Lakewood. We packed up some of her things and I scooted her into my car for the ride home. “No, you are not a bother, Gram. I love you. We love you. We’re just taking care of you, that’s all.”

My grandmother cannot remember what happened between Wednesday and Sunday. My grandmother cannot keep straight the names of her children. She cannot remember to take her medications and fights you when you try to administer them. She cannot remember where she is. And she is suspicious of anyone who tries to help her, including my mom and me.

This is sad and exhausting.

I thought that dementia was not a problem for the demented. It is especially excruciating for the people who have to take care of the afflicted. The caretakers are worn down by the disoriented person that is trying to make a snack of their own fingers instead of the French fries you just served.

However, I suspect Gram, the gentle woman who helped rear my brother and I who helped me become someone who loves telling stories and who understands right from wrong, is trapped somewhere inside the person sitting across from me as I write my column at the kitchen table.

The woman sitting across from me is quiet, but agitated. She is fighting my mother and me over the medications she is supposed to take. She says she is ready to go home. I tell her she is staying here until we all go to the doctor together. She’s staying until we have sure she is well.

She offers an incoherent explanation about why separate prescriptions are mixed together in one bottle.

Then, she has a moment of clarity.

“Sometimes I am wrong,” she says about her prescriptions. “I can’t remember. My mind is a sieve. It goes in and goes right out.”

This is a ray of sunshine I need to keep going. I am worn out and frustrated. I am supposed to be dealing with my own illness, sarcoidosis, and now I wrestle with hers, too.

She did all she could do for me. It is my turn now.

More Friday. Thanks for reading.

The NFL could do without Olbermann, too

2009-10-19T09:00:00.022-04:00

(This one is dedicated to my Aunt Cathy, Uncle John and cousins Ian and Sunny. I'm glad you are home resting, Cathy! Feel better!)

(Watching the New Orleans Saints whip the New York Giants yesterday was like watching your best friend get beat down on a playground. You want to help, but you’re glad you didn't. ‘Cuz you know you would have caught a beat down, too.)

Rush Limbaugh was punted from a group of businessmen seeking to buy the NFL’s St. Louis Rams franchise and I let out a cheer.

Limbaugh is an ignorant and divisive blowhard when it comes to race, politics and culture and there’s no place for him in a game and industry allegedly based on hard work, teamwork, merit, fair play and diversity.

I also would like NBC to bar Keith Olbermann from having anything to do with Sunday Night Football. He knows the game, no doubt. I was a fan of his when he and Dan Patrick were together on ESPN. However, Olbermann has moved from sports to politics and has settled nicely into the role of essentially being the left wing’s version of Bill O’Reilly, which is fine during the week.

However, from noon Sunday until midnight Monday, football dominates the landscape, transcending the boundaries of politics, race, gender and ethnicity. During the Sunday night game on NBC, I do not want to be reminded that America is divided on health care reform, the war, the economy.

I watch football to escape. I want Coach Tony Dungy to explain the intricacies of the Cover-2 defense. I want Rodney Harrison’s take on blowing up the Wild Cat offense. I want to watch old players and geeky fans quarrel about the best teams, quarterbacks, etc.

Rush and Olbermann are polarizing personalities and I think they are fine for the swamps that pass for cable news networks. In the electronic bog, they can spew their rhetoric and quip all they want without ruining my game.

I don’t like my politics and sports to intersect unless we can get Rush and Obermann to duke it out in an iron cage match.

The winner takes on Nancy Grace.

God help the winner.

Children seem especially susceptible to H1N1 virus

2009-10-16T09:00:00.007-04:00

Updated!

The deaths of 43 children between September and early October are being attributed to the H1N1 swine flu pandemic; however, Americans think the press is overstating flu danger and is split over whether they should be vaccinated, according to a new poll.

In all, 86 U.S. children have died from H1N1, commonly referred to as the swine flu, since it arose last spring, say officials from the Centers For Disease Control and Prevention. The CDC has counted 40 or 50 child deaths for the entire flu season in some past winters.

It is unknown how long the swine flu outbreak will last. Still, a chorus rails against flu shots. Websites and talk radio shows quoting dubious sources are whipping up fear that prevents many from seeking out the vaccine.

According to the New York Times, people are expressing confusion over the making of the flu vaccine and whether it is more dangerous than the virus itself. Many are concerned that the vaccines are new and untested. However, officials from the CDC and others have taken pains explaining that the swine flu vaccine is made using the same techniques as seasonal flu shots. Also, clinical trials were conducted, officials say, albeit on a smaller scale.

Information, misinformation and disinformation – a fancy word for “lie” - all flow at the speed of light across social media. People will sort through it and come to their own conclusions.

I realized the futility of putting thought into a message and having is misconstrued or warped. When I was reporting news out of New Haven, Conn., in the mid-90s, a reader once said to me, “I appreciate what you write and I see what you are doing. You tell the people what’s going on and how they can get involved. All you have to do is read in between the lines and…”

The stories the reader spoke about could have been about the latest battle between the Board of Aldermen and the mayor’s office, or problems in public housing. Or maybe they were about some slumlord that was sliding by because he was politically connected.

Regardless of what they were about, I thought my stories were clear, to the point.

“Thank you,” I replied, “but I do not write in between any lines. I write everything I hear and see. I write in plain English so everyone can get it and decide what is best for the community.

The reader seemed to understand what I said. Good reporters construct accurate, fair and balanced stories that edify and/or serve an audience. Readers, viewers, listeners do not have time to read “in between the lines.” News and information should be easy to break down and digest and it should be sourced.

I think the news media for the most part has done a good job of explaining the pros and cons of the H1N1 vaccine. Still, there is no accounting for the way people interpret even the most straightforward news and information, which is why so many members of the public have warped views of what is going on.

According to the Pew survey, there is even evidence that Democrats are more likely than Republicans to get the H1N1 vaccine are. Why? Because elephants, despite their memories, can’t remember the Spanish influenza pandemic of the 1918? For what it is worth, I am a registered independent. I have done my own research and have read much about the groups that could benefit from the H1N1 flu shot. I am going to take the shot.

...Still waiting...

My new cardiologist in Long Branch, N.J., is making me miss my old cardiologist at Northwestern Medical Faculty.

I am still waiting for the results of an echocardiogram to determine whether my heart, affected by sarcoidosis, is better or worse after months of treatment with prednisone, a corticosteroid, and methotrexate, a chemotherapy drug. The test was administered on Oct. 8. As of today - Oct. 15 - the results have not been read.

I called the cardiologist’s office today – again! I am told he is unavailable until Oct. 22 and that the report has yet to be read.

Grrrrr…The hairs on my arms feel like they are standing at attention…

I am told a nurse will call me back. I tell the receptionist at Monmouth Cardiology that that is the third time this week that I have been told a nurse will...

Tick, tick, tick…I feel the prednisone-fueled anger welling up in my body. I note to myself that the rage intensifies without making my pulse race. The Incredible Bulk (I don't have the Hulk's rippling muscles; the Bulk is accurate) can take no more! He will yell! He will smash! He…is disarmed by the reception’s polite demeanor.

“I am so sorry we are keeping you waiting and I understand how you must feel. All I can say is if this has been an emergency, we would have immediately contacted you.”

Well, I can live with that through the weekend. Still, you people are no Northwestern Medical Faculty. I would have had an answer by now. I will be calling Monday.

Still trying not to let prednisone get the best of me

2009-10-14T09:00:00.003-04:00

(Updated! Search for "NFL" or "Rush Limbaugh")

I celebrated Columbus Day by watching the parade in New York City with my grandmother; treating her to an old-fashioned Italian sausage-hot dog, potato sandwich… and bird-dogging a Mercedes Benz for miles along the Garden State Parkway.

Hey, the driver started it! I hate excuses for reactions, but this was a prednisone-influenced response. The mood altering affects of the pharmaceutical had been at bay for weeks. However, things have changed in the past 10 days or so. Do not know why.

The drug I need right now to suppress sarcoidosis symptoms sometimes make me feel like Dr. Jekyll and Mr. Hyde. Jekyll is usually in control, but Hyde sometimes wins. And he won at about 11:30 a.m. Monday just north of exit 105 of the ‘Jersey Parkway.

The day was sunny. The autumn color lining the road is at peak. Few people were out because Columbus Day is a state holiday. I was in my Volkswagen GTI heading to my grandmother’s house to help her with chores and run errands. I was listening to some King’s X , drinking a cup coffee, driving along in the slow lane and –...

Who is this idiot trying to run me off the road? I am in the right-hand lane, the slow lane, because I am trying to chill, for heaven's sake. All of a sudden, I am being pushed to do 70, 75 miles per hour.

I put down the coffee, duck into the left lane and down shift so this idiot in the Mercedes, this jackass with NY plates can blow past me. I then lurch back into the right-land lane and punch the gas…Now my car is a black, turbo-energize missile heading straight for his tail pipe.

The Mercedes driver, some silver-haired, I-am-so-cool-I-wear-my-collar-up old coot, sees me in his rear view mirror. I am flipping him a brown bird. He is scared.

He should be. The chase is on. At least for a few more exits. I eventually let him go.

And I am embarrassed by my behavior. The guy in the Mercedes was rude, but I did not have to stoop to his level. Prednisone makes it tougher to be level headed.

Right now, I need the drug to suppress my immune system, keeping my sarcoidosis at bay. Without the drug, the disease allows my immune system to go haywire, attacking vital organs, in my case the heart and the lungs.

Prednisone is a corticosteroid and has been called a wonder drug used to treat many problems, including arthritis, lupus, and lung diseases. However, it comes with a laundry list of side effects, including mood swings, weight gain, blurry vision, ravenous appetite, diabetes, insomnia, thinning skin. These are not even the most serious side effects. The goal is to get the benefits of the drug and get off it before problems that are more serious develop, including glaucoma and osteonecrosis.

I felt like things were pretty much under control but of late. I have been especially moody, happy, sad, angry, euphoric, sometimes all at once! And I am constantly hungry. I will eat anything. Anything. Anything. I am in a constant fight NOT to eat. And the prednisone beast is not satisfied with celery. The fattier the food the better.

I am taking 30 mg of prednisone a day, down from 60. I am hoping my team of docs will cut the dosage again. I would love to get down to 10 mg daily. I have read that side effects are negligible at that dosage.

I want to get to the point where I do not take any prednisone. I want to be as close to normal as I can get.

There are tens of thousands of people out there taking this drug, some people are taking much more than I am taking. I can’t imagine being on a higher dosage than 60 mg. The dosage made me wildly creative – I shared some of my fiction with a couple of friends and they seemed to enjoy it.

However, the dosage also made me feel like I wanted to get into a fight with a Mack truck. Pity the truck.

After terrorizing that poor motorist, I finally got to my grandmother’s place in Elizabeth. I took her to the drug store; we got a bite to eat at an Italian sandwich shop on Jersey Avenue.

I could feel her watching my interaction with the man at the booth - it's a tiny, outdoor sandwich shop - and with a couple of cops who were ordering food.

“You are easy and nice,” my grandmother said. “You are a nice young man.”

“Thank you, Gram,” I said.

However, I do not think I am so nice, especially on prednisone.

But I will try harder.

Biz partners sack Rush's NFL ownership attempt

During the fall, I live for American football, especially NFL games. Go Giants!

I like the game because it is tough and brutal and smart. Not everyone can play a and I marvel at the strategy and performances. I also like the game because it comes close to the American ideal. People excel based on their deeds and merit, not the color of their skin or because they know someone. Can you catch it, throw it, run it? Can you block or defend the run or pass? Then you play.

We’re seeing greater diversity among players, too. Sixty-seven percent are black, but there are whites, Samoans, Hispanics.

We are even seeing diversity in ownership and in the top management of the league and the individual teams and the game is popular the world over.

The NFL is far from perfect. More could be done for injured players – the league has to own up to the concussion controversy; it could stop penalizing individual expression; it could make more opportunities for coaches, quarterbacks and executives of color. But the league demonstrates that diversity works and is good for the bottom line.

That is why I am happy that Rush Limbaugh will not become even a partial owner of an NFL team. The NFL product has the ability to draw people from across demographic. Limbaugh’s vitriol divides.

Is Limbaugh a bigot? I can’t see his heart, but I have heard some of his words. When it comes to black athletes, he has sounded like a cretin.

I have yet to see where any of his thoughts or philosophies benefit people who are minorities of any strip (racially, sexually, etc.), or are disfranchised. If it’s out there, post it at the bottom of this blog for all to see. I would love to see any constructive thing he may have said.

If Limbaugh is a bigot, he must be salivating at the chance to own a piece of a company that includes blacks toiling on a field. Keep him out of the NFL owners’ booth. That means people of every race, color and creed can support the league without supporting him.

Is blackface ever OK?

2009-10-12T09:00:00.006-04:00

(No echocardiogram update. The results have yet to be read. My cardiologist is off until Wednesday. I refuse to fret. I keep myself busy. And today post something unrelated to sarcoidosis. It is a big world out there. Enjoy).

I wanted to slap an Australian when I saw the thoughtless blackface “ode” to The Jackson 5 from the Down Under variety show “Hey, Hey. It’s Saturday Night.”

However, I want to laugh ‘til I drop when I think about Saturday Night Live’s Fred Armisen or Darrell Hammond putting on blackface to play President Barack Obama, Jessie Jackson or Al Sharpton.

What’s the difference? Context and nuance.

Watch the clip of The Jackson Jive “tribute” to The Jackson 5 again. Do the “performers” look like Jackie, Tito, Marlon and Jermaine? I’m an artist so I can appreciate artistic license, but come on. This looks like white guys who smeared shoe polish on their faces. One of the Jive wore whiteface and an afro wig to portray Michael. No tribute there either.

Nothing about the sketch honors the Jacksons. The soot-colored prop used in the sketch is an archetype of American racism. B lackface hails from a time when people of African descent in America were at once loved and loathed by the dominant white power structure. Loved for their labor, loved for their culture, but dehumanized because…well, because one has to dehumanize their fellow man if they are going to enslave them and steal from them. Can’t do that to someone you see as your equal.

The blackface of Armisen and Hammond is very different. These are not shuffling, shucking and jiving performances. The performances are nuanced. There is a range of human complexity. Even the makeup the actors use reflect the hues of the humans they are poking fun of.

Saturday Night Live is one of my favorite shows. However, it bothers me that there have only been a handful of black performers among the scores of white performers. Eddie Murphy is probably the best-known and most famous SNL alum, "Pluto Nash" and a few other bad movies he made notwithstanding. One of the best Murphy and SNL moments ever was Murphy’s film White Like Me, about the secret world of white people. He dawns white face, a straight-hair wig and proceeds to get special treatment; free money from banks, white-only parties on public transit after black folks get off the bus.

It is keen satire and hilarious.

“They give things to each other,” Murphy muses after not having to pay for a newspaper

I live for the day when SNL producer Lorne Michaels and others in Hollywood cast more blacks in "white" roles. I'm talking about actually casting actors of color to play white icons.

Samuel E. Jackson IS George Dubya!

That will be real proof that we are overcoming.

Don’t laugh. In a world in which many white people still feel smearing ones face in a coal-black substance is a way of honoring people of African descent, anything is possible.

No news is good news

2009-10-09T09:00:00.001-04:00

No news is good news.

I am awaiting the results of an echocardiogram to measure the ejection fraction of the left ventricle of my heart. I am being treated for pulmonary and cardiac sarcoidosis and it is my hope that medication, exercise and life changes have improved the strength of the left ventricle, which pumps oxygen-rich blood into the body.

I have been anxious about the test, but I have tried not to show it. I, like tens of thousands of people dealing with an autoimmune disease, just want to see some sort of improvement. And I really want to get off prednisone, which is controlling the disease but causing side effects, including type 2 diabetes, mood swings and weight gain. Yes, I am an edgy fat man with a sweet tooth…But I digress…

The test Thursday morning was easy enough. Took off the shirt, laid back, let a technician run a goo-covered wand across my chest to “read” heart activity. The ejection fraction is demonstrated in a percentage. A normal "EF" is between 50 and 70 percent. Mine was in the mid-30s in March, the last time it was checked. I want my heart to improve so I stop taking prednisone and methotrexate, which "treat" sarcoidosis by suppressing the overactive immune system. I don't want to go into the winter months with a suppressed immune system. I caught a could that knocked me on my butt for two weeks. I don't want to go through that again or worse. I get nervous any time I sneeze or get the sniffles.

I want my heart to improve because I don't want a defibrillator installed in my chest.

The technician who conducted the test Thursday was cool. Very professional and put my mind at ease even though she could not read me the results. My cardiologist will do that. “Well, I guess I won’t freak out. It’s not like you stopped the test to get the doctor,” I said after we were all done.

“That’s only happened twice in the 10 years I’ve been doing this and I don’t have to do that today,” she said.

Good. Later Thursday, I did not call my cardiologist for the results. I wanted - needed – a day free of worrying about sarc and what it is doing to me. So, I exercised, did some writing and am preparing myself to make the call. Regardless of what the doctor says, I know I am still in the midst of a lengthy process to get well. Some days will be better than others, but I keep moving toward the goal. Watch. I bet he will be off today. Then it is 72 hours of waiting.

Oh, well. Life goes on. It finds a way. I take solace in that fact.

Have a nice weekend.

Checking 'ejection fraction' for heart improvements

2009-10-07T09:00:00.002-04:00

(Find a penny, pick it up and all day long you’ll have…goodness only knows how many germs and bacteria on your fingertips…Good luck trumps germs, though, so I pick it up. Hand sanitizer, where are ya when I need ya?

My flu or wicked cold or whatever is finally gone. I feel good so it's back to walking, lifting, and getting as healthy as possible. Does better health translate into better writing? You be the judge…)

“That is the story of the day.”

The cardiologist said the preceding after hearing my answer to his question, “What brings you here?”

I told him about everything leading up to my hospitalization in March with pulmonary and cardiac sarcoidosis. Dr. Charles J. Mattina of Long Branch, N.J., is a good listener. I like his follow up questions and demeanor. He is another doc hired in my on-going fight against the disease.

His role is crucial. Cardiac sarc kills. There is no sugarcoating it. We will know more about my heart after I undergo an echocardiogram. I do know my left ventricle is weak, two thirds weaker than it should be. Doctors at Northwestern Medical Center concluded that the sarcoidosis that scarred my lungs also weakened my heart.

A Northwestern electro-cardiologist recommends the installation of a defibrillator to shock my heart into a normal rhythm in case it beats awry, causing sudden cardiac death. He recommended that action in March, but after careful consideration and getting a second opinion, I am opting to see if prednisone and methotrexate will contain the damage.

I was sick during the winter of '08-09, the coldest winter in Chicago in 30 years. The cold air clamped down my lungs like an icy vice grip. Every breath was piercing pain. Every step, labor. But I went to work - two jobs in fact and did what I had to do to survive. Thanks to my friends I made it through. If I could live through that, I figure I can live through almost anything.

“If I was in your position, I would have made that decision,” said the cardiologist about my strategy.

Thursday, my new cardiologist will test my election fraction, which measures how well the left ventricle functions. This is usually expressed in percentages and the good folks at the Cleveland Clinic explain it pretty well. I’ll try it: With each beat, a normal heart pumps a little more than half its volume. A range of between 50 percent and 70 percent is acceptable. A lower ejection fraction signals problems with the heart, including a heart attack or disease like cardiomyopathy.

My ejection fraction was in the mid-30s when it was last measured in Chicago. I have given up cigarettes, exercise and have been consistent with medications to project the heart. I am eager to see if the situation has improved.

I like my chances, but I am open minded and ready for anything. If we don’t like the results, we’ll try something else. I am not surrendering to sarcoidosis. Too many people to see and too much stuff to do.

...Flu shot: Round two...

I’m going to roll up my sleeve and take the H1N1 swine flu vaccine shot when it becomes available. I won’t be first in line, but I will not be the last. I will do my best to avoid situations where I can get sick, but unless I decide to live in a plastic bubble, I will be out in the world and run the risk of running into someone who sneezes without covering their mouths or..picks their nose and …yuck...wrote about that always you know what grosses us out! I am taking the shot as a precaution. The pros outweigh the con. Let me know what you are doing and why. And good luck!

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Time will tell whether Letterman sex scandal has legs

2009-10-05T09:00:00.009-04:00

(Greetings. I usually write about conquering disease, specifically sarcoidosis. However, I also told you that I would write about anything that moved or fascinated me, including pop culture and news. I am fascinate by the David Letterman situation and debate, so here's my two cents. Back to health matters on Wednesday. Thanks for reading and let me know what you think)

David Letterman admits that he dropped his Worldwide Pants to plow young girls who worked for him and the majority of people seem to be OK with it.

He admitted to sex with staffers during last Thursday's show after explaining to his TV audience that he was the victim of an alleged extortion scheme involving his personal life.Robert "Joe" Halderman, the CBS producer accused of trying to extort Letterman should get what is coming to him if he is found guilty.

However, as far as this newsman is concerned, Letterman buried the lead. The shocker was the dirty deeds with folks who worked for him and he should have copped to that before looking for sympathy.

Letterman is no Roman Polanski. He did not admit to plying a 13-year-old girl with booze and pills to have sex with her and then flee prosecution for some 30 years.

Nor is Letterman a public servant. He might be a hypocrite because he made fun of people for doing what he was doing, but Letter never publicly extolled the virtues of high character while engaging in trysts.

However, Letterman is one of the biggest stars on TV and, through ownership of his lucrative production house Worldwide Pants, Inc., one of the most influential men in the entertainment industry. And bosses in corporate America are not supposed to sleep with the hired help.

Letterman’s “Golly-gee-let-me-tell-you-a-story-about-what-happened-to-little-old-me" routine surprised me not. That is his shtick. He is covering his butt and trying to garner sympathy. Watch the monologue again. It is not funny. Or did I miss the joke? It is masterful manipulation. I am shocked that so many people simply bought it and don’t think what he did was a big deal.

It does not matter that at least two of the women who say they engaged in affairs with Letterman speak fondly of him.

The employee-employer relationship is a master-servant relationship and the servant’s consent means nothing. A couple of years political commentator host Bill O'Reilly settled a lawsuit filed by a female produce who claimed the two had phone sex.The producer, in an interview, claimed that she allowed the activity to continue because, "I'm not used to saying no to this man on any level."

This is why most companies have policies in place against such behavior. Letterman’s actions, according to a release from Worldwide Pants, did not conflict with any company policies. The company has a CEO, but Letterman IS Worldwide Pants. He is the product and the product is worth millions.

I guess this one sticks in my craw because, along with shaping news coverage and newspapers, I have served as a mentor and coach to dozens of young people, mostly women, who were newly-minted journalists or interns. These women were bright, talented and hungry and it was my job to help them hone their skills and learn the business so they could excel. That is what young people testing the waters of an industry should be able to expect. I rose through the ranks of my industry thanks in large part to good mentoring and I am happy to pay it forward, no strings attached.

I bet that Letterman was some kind of a mentor once. However, the women with whom he slept; will they rise in their industry because of demonstrated talent and contacts or because they slept with Letterman? Was their quid pro quo?

And I have a question for moms and dads who have adopted the “Leave Letterman alone” stance: Would you laugh until you cried if your 20-something daughters came home with tales about trysts with the 60-something owners and franchisees of Home Depot, Walgreens or Burger King?

And did these women really love Letterman, or did they simply understand that his word could make or break their show business careers?

Young women march into the work force every year with dreams of making it. They need mentors, not letches who are going to take advantage of the innocent, the scared, the confused or the enamored.

We'll see if public sentiment changes as the story develops. (Wednesday: Left ventricles, electrocardiographs and flu shots, oh my!)

Writer's now cautious about next flu shot

2009-10-02T09:00:00.008-04:00

My internist does not believe that my recent illness, which included "flu-like" symptoms that laid me low from Sept. 19 to Sept. 30 had anything to do with the seasonal flu vaccination shot.

"The virus is dead, you know that?" he said, referring to the shot.

"Yeah, I know the virus is dead. However, the Centers For Disease control even concedes that some people get sick from flu vaccinations," I responded. I don't want him to be on the defensive. I trust him, but I also want him to know I pay close attention to everything in connection with my on-going fight against sarcoidosis.

"Well, we may never know" what caused the illness, he said. And he is right. I take prednisone to fight the sarcoidosis in my heart and lungs. The drug suppresses the immune system, which during sarc flareups goes haywire and attacks vital organs.

The prednisone stops the attack but leaves the immune system gate wide open to be stormed by a host of germs and viruses. We'll never know where I picked up a bug.

I could have caught a nasty cold from someone in the mall, at a doctor's office, a super market, the movie theater, the library or book store - which is where I am writing this blog right now - someone needs to scrub that men's bathroom here, yo. Really.

The point is that I could have touched a door knob anywhere, picked up a germ, touched my mouth or rubbed my eyes and voila!. Instant illness.

Well, not instant....takes a few days to develop...Trouble is, it used to take a couple of days to get over the common cold. Now, on prednisone, it takes much longer and there's always a chance it could get worse.

That's why I am constantly washing my hands, using hand sanitizer, watching what's being sprayed in my direction (which sounds more disgusting than it is, I reckon). The internist recommends I stay in and away from places where crowds gather.

Stay in for the entire fall and winter? Fat chance. But I will avoid the crowds, which may mean scrapping plans to see my favorite band Living Colour later this month. That is a bummer, but I'll catch up with them eventually. Shopping, writing at B&N, I'll do all of that off-peak.

That big dude in the corner of B&N in Brick or Howell, the guy typing away while wearing a WWI gas mask... Might be me. Feel free to come over and say hello.

A few weeks ago, I wrote that I would be among the first in line rolling up my sleeve for the H1N1 (swine flu) vaccination. People with compromised immune systems should get it, the experts say. However, on the wake of my experience with the seasonal flu shot, I'm adopting a wait-and-see attitude. The cardiologist is cool with it.

"So maybe you allow a few weeks to go by and see what happens to the people who take the shot. You're a journalist so you'll be watching and researching anyway," said a cardiologist I visited this week. I was trying him out; thinking about employing him in my fight against sarc.

"So I should not take the shot, sit back and see if millions of people who get it die before I get it?" I asked.

"That's what I would do," the cardiologist responded.

He's hired. A man after my own heart.

...Good show, Chicago...

Too bad that President Barack Obama could not persuade the International Olympics Committee to award Chicago the 2016 Summer Olympics just on the off-chance that John L. Perry and the people at Newsmax.com who have supported him, and the Glenn Becks and Michael Steeles across our great land suffer a collective aneurysm from shock and die.

That was mean, I know. However, it wasn't unpatriotic, a trait demonstrated routinely by the Perrys, Becks and Steels of this nation. They continously wish ill against the country and its sitting president.

Perry even wrote how the country might benefit from coup d'etat - a military overthrow because one group one and another group lost the national election, the way it is explained in the U.S. Constitution, you know? Newsmax.com published it and then took it down when readers objected. I guess the people that run that site are only brave then not challenged.

Steele actually argued that winning the Olympic bid does nothing to immediately help the country. It would be a big confidence boost to a nation still undergoing tough times and it will mean jobs that start way before 2016, Mike. It takes a while to build for an Olympics.

Do you not undetstand that because your head is made of steel?

I'm sure they and others will take glee in the fact that the country lost the chance to showcase its splendor to the internationally community. I an almost hear Beck manically screaming, "We lost! Hip-hip hooray!"

So, Chicago didn't win. It's still a great city it can now turn its energy to worthwhile public projects, including improving infrastructure and schools and getting a handle on youth violence. Chicagoans, when they put their collective minds to it, can solve any problem.

Much luck, Chicago. Your success would be good for the country and it would also make the Perrys, Becks and Steels of the land choke, which is fine with me...

Establishing 'the new normal'

2009-09-30T09:00:00.017-04:00

(Above: A radiogram showing advanced pulmonary sarcoidosis)

I am seven months into dealing with sarcoidosis of the heart and lungs and I am still getting used to the new normal. Some people who are diagnosed with chronic disease go through a period of mourning the passing of that which they thought they were before they were stricken.

However, I do not mourn the old me because I am still alive. I'm just tryng to get with the new normal.

Sarcoidosis has changed how I live. I have to think about it or react to it all the time. The autoimmune disease is scarring my lungs and heart and who knows what organ or system is next on its list. Sometimes I feel like I am paying attention to every breath and heart beat.

Most days I am upbeat. I am going to beat this thing. Some days I am low and scared. However, I try not to allow negative thoughts dominating my mind.

"It's tough. It's a real challenge dealing with a chronic disease," my internist said to me today after I visited him after being ravaged by what I think was a bad reaction to a flu shot. He things I caught a cold and had a rough time with it because I am taking prednisone, which controls sarcoidosis but suppresses the immune system leaving one especially vulnerable to infection.

However, right now we're focused on chronic conditions and the new normal, so...

I told my doctor that I am frustrated because I am no longer normal. He pointed out something that has been bouncing around in my head since childhood: Normal is relative and fleeting.

It would be great if my heart and lungs functioned at what is widely considered a healthy standard, but they do not. I have to find ways to maximize what I have.

The challenge, my internist said, "is getting used to the new normal. There are always going to be challenges and obstacles," but life goes on.

I wish I did not have sarcoidosis, but I must admit that some good has come from the situation. I have learned:

- Patience. 'Now' has always been when I wanted stuff done. Comes from growing up in the wake of the Me Generation, being a daily journalist and a card-carrying member of our instant gratification culture. However, some things, like healing don't happen according to our planned schedules. Healing takes its own time. I have written about that before, but it is hard to accept. Still, I get it. I am getting it very slowly, but I am getting it.

- Humility. I can do this alone with no help from others. That preceding statement is bunk, but I tried to believe it for almost 20 years. Simply put, some things out there are bigger than we are. There are times when we need to help people and times when we need to reach out for help. I was good at helping but not good at asking for or accepting help. That is both selfish and foolish.

- Discipline. One thing I love about daily journalism is immediate deadlines. News stories are worthless if they are not timely. Managing a chronic condition has made me more mindful of being disciplined in my personal life - taking medications on time, monitoring body systems, exercising on a regular schedule. It is a matter of goal setting and prioritizing.

- Strength. I had to go into the reserves to survive the winter of 2008-2009. My sarc symptoms, in fact, were a load to bear from the summer of 2008 through March of 2009, when I finally said "No Mas" like Roberto Duran after his second fight against Sugar Ray Leonard. I sought help because I had to. No other choice. And I am glad I did.

Again, I wish I did not have sarcoidosis but I do see a bit of light in the dark tunnel.

In the new normal, I plan to find a way to make that light shine.

Help kids by enforcing existing anti-smoking laws

2009-09-28T09:00:00.033-04:00

(The flu kicked my butt last week. I got a seasonal flu shot on Sept. 17 and two days later I was sneezing, had a runny nose, aches and pains, watery eyes, all the good flu symptoms. My breathing became more labored, too, which frustrated me it had improved over the past few weeks. It appears that the worse is over, though, but, yes, Rolan, I am going to the doctor anyway. I promised. Not sure I want that HINI swine flu vaccine, not after how seasonal flu shot made me feel.

On a positive note, Sunday I fit into a pair of shorts that that were too tight to wear just two months ago. The triple h's - hazy, hot and humid - were in effect Sunday so I wore them out. I would have worn them if it had snowed. Celebrating weight lose trumps seasonal fashion. And now, the column...)

First off, if you smoke or are considering smoking after being exposed to all the evidence about the dangers of tobacco and nicotine, you are a fool. A drug-addicted fool, but a fool no less.

I am a reformed fool. I smoked for more than 20 years and quit only after sarcoidosis look hold of my lungs and heart. The desire to smoke was strong. I started smoking again shortly after a 10-day hospital stay for shortness of breath, chest pains and other symptoms of the autoimm une disease. Now, it has been almost three months since my last cigarette.

I could feel my body telling me that it was time – past time – to stop, and with the help of a little, blue pill…No, the other little, blue pill. Get your mind out of the gutter…I was able to stop. I liked smoking and I am sure that the nicotine implored me to continuing puffing away even though evidence was mounting that something was wrong. I will continue to fight the urge to smoke and take solace in the fact that my lungs are improving. However, they are nowhere near as good as they were before sarc. I just know it would be foolish to slip back into that nasty old habit, so I won't.

While I agree cigarettes are terrible, I am against the new law banning the importation of flavored cigarettes. We already have laws on the books that, when properly enforced, keep cigarettes out of the hands of kids.

(My buddy's favorite smokes) I am writing in support of a friend of mine who loves imported clove cigarettes. I would smoke them with him on breaks at the New Haven Register. I preferred Marlboros or Camels. These cloves were too rough. When I inhaled one, it felt like a hole was being burned through my throat. They were tasty, though, like an exotic fruit. An exotic fruit that can burn a hole through your throat.

(Children are better off if we feed them the toys that come with the kids' ''meals") If we want to pass laws protecting kids, let's ban kids' meals from fast food restaurants, commercial aimed at getting kids to crave fatty, salty, sugary foods and drinks, and cap the number of hours kids can watch TV or play video games.

The news media got excited about kids setting records for playing the video game Guitar Heroes. Video games are fun, but kids are wasting time on games when they could be outside getting exercise or doing something that might spark imagination and innovation, like spending hours actually learning how to play a real musical instrument. Something. Anything but being a lump on sofa pretending to be a guitar hero.

I just imagine a generation inspired to do their best to mimic the work of the world's best musicians instead of aspiring to create original great music themselves. And I imagine the contestants preparing for battle by crackling their knuckles, sitting on their flat, ever-widening asses and pouring and shoving massive amounts of soda, French fries and who-knows-what-else down their throats.

Consider banning fruit-flavor spirits and malt liquor. Very few wine coolers have actual wine in them, honey. It's a good bet the key ingredient is malt liquor, the swill that down-and-out men used to hide in paper bags and chug while leaning in street lamps to steady themselves. The manufacturers wanted to move more of it so they camouflaged the taste and drab brown look in sweeteners and food coloring, prettied up the packaging so it would be cool for young people, especially young women, and ta-da! Drink up, just careful not to crash your car and mindful of whom you might wake up with after a fruity-tasting bender.

(Ladies and gentlemen, our new Guitar Hero champion! Whoa!) My friend is an adult, a taxpayer and should be free to consume whatever he wants in the privacy of his own home as long as he is not harming anyone, and he is not. I wish I could wrap up this column up by writing that I want my buddy in Connecticut to quit smoking because I want him to be healthy for years to come. However, he and some other smokers I know puff away with nary a hint of respiratory problems. Their luck might one day be steamrolled by science, but they are fine right now. More power to them.

Perhaps it was all those years of exercising and playing in the sunshine during the good old days before video games became popular.

Hey, pale fat kid, drop the remote, get outside and play!

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For many patients, pharma side effects are a rough ride

2009-09-25T09:00:00.024-04:00

When I take my medications, I imagine that the little pills migrate down my esophagus to my stomach, split into two groups and rumble like the Jets and Sharks in West Side Story.

These little buggers stomp and kick and pound the body. At least that is what it feels like where I am sitting.

The pharmaceuticals I take to fight sarcoidosis have been getting to me of late. I was handling drug side effects well but then two things happened: The introduction of metformin at a high dose and a seasonal flu shot. The metformin is for type 2 diabetes, which was caused by high dosages of prednisone used to fight my case of lung and heart sarcoidosis. In all the docs and I are employing….well, many drugs. Let’s list them: prednisone; methotrexate; lisinopril, hydralazine and hydrochlorat (to reduce prednisone side effect of high blood pressure) folic acid (to stem the cell-destroying side effect of methotrexate); metformin; Advair disk and Combivent inhalers (to mitigate pulmonary sarcoidosis and symptoms of COPD); Zolpidem (Ambien) to counteract prednisone–induced insomnia; alendronate and calcium and vitamin D supplements (because prednisone can destroy bones).

Prednisone is a steriod that suppresses the sacroidosis symptoms but also alters mood, makes your joints hurt, ratchets up blood pressure. Methotrexate suppresses sarc problems, too, but, it makes you feel worn out and can destroy good cells, too, which is why folic acid is prescribed to the mix. The blood pressure meds make you drowsy. The inhalers make you sneeze. The Zolpidem knocks you out.

Metformin side effects, stomach upset and worse, are now thrown into mix. Fun. Forty-million Americans take metformin and most suffer no problems. I guess I am one of the lucky ones.

There are tens of millions of people out there among us taking multiple drugs to battle some sort of disease. I watched a documentary that told its tale through the story of a young man in his 20s taking 30 pills a day plus injections to deal with a serious kidney problem. I am amazed people on multiple meds function the way they do.

Sometimes, I take these 'scripes and I develop what I describe as a do-not-know-whether-I-am-coming-or-going feeling. I feel weak and edgy and ragged and raw. So I just sit and let it pass. Watch some TV. Good documentaries on PBS in the mid-afternoon, you know. Learned a lot at the history of so-called narcotics farms in America. Fascinating stuff.

I wait until the feeling passes and then get on to what I was trying to do in the first place. I remain greatful because as bad as I have it, I know there are people who are worse off than I.

And better times are ahead. I visited my pulmonologist Wednesday and he said my lungs sounded clearer than the last time he listened to them, which was about six weeks ago. Blood pressure was 127 over 80, which is great for me. The goal is 125 over 75. My oxygen saturation test reading was 94/95 percent. He says a reading of 97 is great so I am not far off. If it hits 87, well, you have problems. Have to make sure it does not dip. Weight-wise, I am at 304. Not exactly where I wanted to be, but it is lighter than 312 and the weight loss comes after quitting smoking and while still taking prednisone. "You have no idea the good you've done by quitting smoking and dropping a little weight. It's hard; just try to keep it up," my internist said recently. I will.

The next big thing – I guess the only big thing – is my heart. The left ventricle, which pumps oxygen-rich blood, is weak. The question is how weak. The heart, a muscle, gets stronger with exercise and I have been working out. Did the prednisone reduce the inflammation and scarring that appears to be interfering with normal heart function?

I find out on Tuesday…finally. I am hopeful. The affects of the seasonal flu shot? It makes you feel...fluey. I'm feeling better, though. Can't wait to take the swine flu vaccine shot in October. Fun.

Ultimately it is a trade off: Do the drugs benefits outweigh the side effects and can the side effects be managed and/or tolerated? Will challenging times now give way to something better in the future? I say yes to both.

Save the girl, see the concert

2009-09-23T09:00:00.019-04:00

(This guitarist's playing sounds like what to the author? Read on)

These past few days I have been getting used to metformin, prescribed to me because I developed type-2 diabetes, a side effect of prednisone. I am taking prednisone to fight lung and heart sarcoidosis.

Metformin makes me feel like crap. I am fatigued and nauseous and my muscles ache. It has also robbed me of energy and appetite, although the latter is not so bad because I am trying to lose weight. Still, the other side effects are not cool.

My pulmonologist is recommending I split the dosage – 2,000 mg - to see if that helps. I just want off this drug and all the others right now, but I have to keep reminding myself that the goal is not just to quit taking them right now. The goal is to get well, period, and that might take a while. Even longer than I imagined, so I need to steel myself for the journey.

Today I am getting myself out of the doldrums by listening to “Chair In The Doorway,” the new CD from Grammy-winning hard rockers Living Colour, one of my favorite bands. I bought it Friday. This column, as always, is about overcoming, not wallowing in self-pity. I get low like the next person, but I try to bounce back as soon as possible. Music helps me do that, so…

Chair In The Doorway is very good. On a scale of one to five stars – one being horrible and five being epic – I would give Chair in the Doorway a solid three-and-a-half to four stars. Corey Glover’s voice is still among the most soulful falsettos in pop music; Vernon Reid’s guitar solos still amaze me. However, what sets LC apart from the majority of hard rock bands is the ability to maintain rhythm…the "roll" in rock and roll...while also making the audience want to bang its collective head or jump into a mosh pit.

The drumming and bass playing of Will Calhoun and Doug Winbush keep the sonic experiments grounded and groovy, and Reid is at his most incredible when he, too, keeps a rhythm. Even my dad, a blues and jazz connoisseur, is amazed by Reid and has been a fan since the the late '80s, when I just shared the band with him.

"Chair In The Doorway" is LC’s return to form after the uneven "Collideoscope" in 2003, but I do not compare it to LC classics "Vivid" and "Time’s U"p (my favorite CD. Favorite song: "Information Overload." More sonic and artistic than everyone’s fav "Cult of Personality." To me, the IO guitar solo sounds like a man struggling to break the constricting bind of technology, clinging to him like hot plastic wrap and suckng away precious time, which is all one's got anyway...Well, that's what I take away from it).

Behind The Sun is the likely hit off this release, but several songs, including "Decadance," "Hard Times," and "Bless Those (Little Annie's Prayers,)" stand out.

I saw LC for the first time in 1988 in Philadelphia. I was so blown away that I took the subway to Tower Records on South Street, ran up to the clerk and said “I just saw Living Colour! Please give me anything you have by them and any band like them!” I walked out with copies of music by Bad Brains, 24-7 Spyz, Fishbone and a copy of Maggot Brain by Funkadelics. I knew of them and their music, but not about their rock experiments in the ‘70s. I was in heaven even though I am sure my neighbors were not. I like it loud.

I’ve seen Living Colour six or seven times. CDs are great, but the live shows, they flow differently. CDs capture a moment in time, but a live band, standing right before you, can decide whether to slow down or speed up a number. A band feeds off the energy of the audience. A good Living Colour show is like attending church. It will leave you rejuvenated and hopeful about the future. I plan to see Living Colour live again in New York City at the end of October. Can't wait.

My favorite Living Colour concert was at the in 1993 at the Roseland ballroom. I lived in Nyack N.Y., back then and was a reporter for the Rockland Journal-News. I went with one of my best friends, Daryl, but my guest of honor was a woman named Lisa. When I think about it, Lisa is certainly one of my best friends, too. She’s also a smart, beautiful woman. I have known her since I was a teenager. We met as camp counselors but attended separate high schools. We grew apart during our college years but caught up with each other in the early 1990s and started hanging out. We always clicked so I should not have been surprised that she knew about Living Colour, heard some of the music and wanted to see them in concert. Sweet.

I was going to see Living Color with Bad Brains on the under bill. I would be escorting my pretty and smart female friend - and I seem to recall she was wearing a flowing min-outfit, clunky high heels and a black leather jacket…she was quite a sight - and hanging with my best bud, too. Things don’t get better than this, I thought.

I gave Lisa a pair of earplugs as a before-concert gift, we picked up Daryl and drove to NYC. We ate at a Houlighan’s near Roseland and hustled over to the concert hall. We were careful to stand in the middle of the growing throng. I didn’t want us too close because I did not want Lisa to be trampled or swept up by the dancers headed to the mosh pit – I lost one to the pit once. Another story for another time.

(The original, legendary Bad Brains line up) Bad Brains is taking stage. The lights go low. The crowd starts cheering as guitarist Dr. Know and bassist Darryl Jenifer swagger onstage their axes in hand (genius-nutso lead singer Paul D. Hudson, more commonly known as H. R. - Human Rights, and his drummer brother Earl Hudson had split with the band at the time over creative differences. Vocalist Israel Joseph I replaces H.R.; Cro-Mags drummer Mackie Jayson replace Earl). My boy Daryl’s eyes are big, soaking in the scene. I turn to Lisa, who was on the left. She is a beautiful woman, I think. And very cool. How many women are cool enough to hang tough at a Living Colour-Bad Brains concert?

Lisa smiles at me as I hear Dr Know welcoming the crowd to the Roseland, he hits chords on his guitar. I look into Lisa’s eyes. They are…rolling up into the back of her head. She is out!

Watch the concert…save the girl…Save the girl!

Darryl and I grab her and get her to the couches lining the concert hall. We trample over people to get her there. Sorry.

It happens very quickly. Lisa was recovering by the time we got her seated. It was the heat. Too hot and not enough liquids. Daryl disappears to the bar and comes back with cups of water and ice. Lisa and I thank him. She says he is OK. He disappears toward the mosh pit. Stomping through those folks while helping Lisa did his soul some good.

Lisa tells me she is OK and I believe her. She is beautiful, I think, and tough. I wade back into the crowd in time to see Bad Brains perform “Sacred Love.” I keep a close eye on my friend, too. Daryl floated by every so often, bobbing his head.

It was the best concert I ever attended.

Losing a battle, winning a war

2009-09-18T09:00:00.001-04:00

Journalists tend not to look at the bright side of life. As a reporter, editor or journalism instructor, I will tell you that stories are stories.

However, I am not interested in crafting or editing lightweight features about a day at the county fair or a little kid who grew a gigantic pumpkin. Give me a homicide story to cover or coordinate. Let me or my team of reporters dig into political or governmental corruption.

Anything with conflict and drama. Something that people will move people to act. Something that will make an audience sits on the edge of its seats.

So, with that mindset, it is tough to get excited about the good news amidst the bad.

My internist called me in Wednesday to explain the results of blood work he ordered. I have sarcoidosis. It affects my lungs and heart and I am taking prednisone and methotrexate to control a wicked flare up of sarc symptoms that landed me in the hospital in March.

Good news: My blood pressure was lower than ever 117 over 70. The goal was 125 over 75. That is cool. My cholesterol level is good enough that it “is considered a negative risk factor for CHD (coronary heart disease)," according to the lab report. OK. My lungs sound clearer than they did the last time I visited my doc six weeks ago. Fine; got that going for me. What else?

Bad news: I have developed type II diabetes. Blame it on the prednisone. The drug saved my life in March by halting the development of scarring that was compromising my lungs and heart. It also has many side effects and there is no way to predict which ones will develop until you start taking the drug. Prednisone side effects I am dealing with include mood changes; insomnia; headaches; weight gain; constant hunger; fluid retention, high blood pressure, soreness, thin skin…and, now, diabetes.

On the bright side, I don't have other nasty prednisone side effects, including glaucoma and other irreversible conditions. And the good test results are indicators that clean living and the medications, for the most part, are paying off. I have to stay on top of things and obviously, in the wake of the diabetes thing, have to make more life style changes.

But, hey, I have already quit smoking, drinking, and drastically reduced caffeine – trying to quit that, too. I am eating right, exercising every day, getting eight hours of sleep, brushing thrice daily and flossing…

...Helping old ladies cross the street, and trying to generally be a good scout and…

Fuck, I am pissed off and frustrated. I will not throw in the towel or have a pity party of one or anything like that. But I have to express my shock and outrage at this shit. I just did not see it coming even though I have been psychologically preparing myself for a moment like this one. I know my war against sarcoidosis could be a long one. It could take up to two years to rein in symptoms and the changes I have made are permanent. I loved smoking but I cannot go back. I loved having a beer – or two, or three – must give that up, too (definitely while I am on methotrexate and my new pharmaceutical friend, metaforin.

A field general does not agree to lose battles in effort to win a war, but that is exactly what I did when I decided to stick with prednisone for as long as possible in this fight against sarcoidosis. My goal is to get off the corticosteroid and all the drugs I am taking to manage prednisone and methotrexate side effects as quickly as possible. I want off before something else crops up.

Sarcoidosis, prednisone, methotrexate and these other drugs make me feel like Robert DeNiro in Raging Bull. Its the story of middleweight boxer Jake LaMotta who, while wrestling with life’s demons, literally gets into the fight of his life against the great Sugar Ray Robinson.

LaMotta is a slugger, a hell of a fighter. Think Marvelous Marvin Hagler, a tough street brawler type, only Italian American. Robinson is widely regarded as the best boxer of all times. He was a smart, strong, precise and methodical fighter. He would break down an opponent piece by piece – much like good old sarc.

During a championship bout on Feb. 14, 1951, Robinson beat the snot out of LaMotta. This was the sixth time the great boxers met in the ring. The scene is graphically re-imagined by film director Martin Scorsese. (Left, portrait of greatest boxer ever - period) Robinson really kicks LaMatta's ass. Exhausted, bruised, battered, and leaning against the ropes, The Raging Bull implores the champ to go for the kill. To take him down. Robinson obliges, releasing a flurry of punches that make LaMotte’s face look like cube steak (Yes, a boxer's face can look like raw meat after a bout), The fight is ended; technical knockout in the sixth round.

But LaMotta is still standing. “You never got me down, Ray. Ya hear me? You never got me down,” LaMotta says to Robinson. Sarc, prednisone and the rest are dealing out some heavy blows, but they did not knock me down.

They will never knock me down.

Apologies must be sincere, humble to be acceptable

2009-09-16T00:18:00.014-04:00

Image via Wikipedia

I am not willing to let U.S. Rep. Joe Wilson, R-S.C., off the hook for shouting “You lie!” during the President’s speech on the health care reform bill.

I am ready to crush my Kanye West CDs after his social mugging of Taylor Swift’s moment at the MTV Music Awards.

However, I am ready to forgive Serena Williams’ expletive-charged tirade at the U.S. Open.

Why do I want to forgive Williams and not Wilson and West? Sincerity.

Williams, Wilson and West are just three of the millions of Americans who are part of the larger rude culture that grips the nation. Got to www.youtube.com and you will see many examples of rudeness and obnoxious behavior passed off as entertainment or edifying thought. Celebrities and elected officials have figured out how to take rude to a higher level.

I have been battling rudeness as if it were a disease. I battle it about as hard as I battle the sarcoidosis that affects my heart and lungs. I’ve written about my desire to live by the Golden rule and to be decent for the sake of being decent. Also, I think it would be good for my health, too.

However, some folks can’t help themselves. And we’re all far from perfect. Frankly, I could lose it any moment. I am a hot head. I just strive to control it, especially while taking prednisone, which helps with my autoimmune disease, but makes my temper shorter than usual. Yes, I seem easy going. Trust me. My fuse is slow but attached to a powder keg and it occasionally erupts. Or perhaps my temper is like molten rock, waiting to find relief through a fissure. Relief in the form of yelling at the top of my lungs. I just fight the urge. My parents reared me well. I am no pushover, but I want to be respectful to others. The surnames McClendon and Lambert (my dad’s surname) belong to other people and I do not want to do bad by them.

I am trying to live a slower-paced, evenly keeled life, but this comes after 20+ years of running at full speed. It is hard to idle and chill. Just ask the receptionist at the Long Branch, N.J., radiologist office I yelled at for not walking the images they took of my chest from their third floor office to my doctor on the fourth. What, do I have to come in from Lakewood and do it myself? It make no freaking sense I snorted, verbally bullying her to deliver the films to my doc.

I thought about my actions and I apologized to the woman's face the next day. It was not her fault she was following a policy set by her boss. My apology was sincere. I am not sure about the apology offered by Wilson to Barack Obama. He gave it up only after members of his own party dogged him to do so. He also continued to perpetuate a lie – that the president’s health care proposal includes provisions for care for undocumented workers (illegal aliens, a term I do not like). Read the 1,000 pages and find the language for us, please. It is not there. That makes Wilson insincere and a liar.

I own the West CDs entitled College Dropout and Late Registration. I admired the rapper for speaking out against the federal government’s mishandling of the relief effort in the wake of Hurricane Katrina.

But West seems to be working on a new CD entitled No Class, No Manners because that is what he exhibited on Sunday during the VMAs.

Can you imagine his reaction if someone had taken the mic from him while he was delivering a thank-you speech after getting an award? That was one of the most classless acts I have ever seen. And The MTV Music Awards is one classless act after another, so that is saying something.(Hey, Kanye, just between us: Swift video won because in it she portrays an every woman overcoming obstacles. I love Beyonce’s video, too, but it is because she and two other fine-assed women strut their stuff while dressed in nothing more than body suits and stillettos. Greatest video ever??? Greatest video with fine-asssed girls in body suits and stillettos, man, that's it).

West dissed Swift on a Sunday and apologized the next day on the new Jay Leno show. But hid behind the apron of his dead mother, blaming his transgression on working too hard and not taking time off to grieve the death of his mom.

OK, here’s a prednisone moment: Kanye, boo-!@#$ing-hoo, man. Life is lived on the fly. There is no time off. I feel the loss of your mom, but she is not an excuse for your jack-assery. Get it together. Even the president referred to you as a jackass. Dude, I don’t think it is often that a president drops that about people. Reporters would report it. It does not come up often.

A straight up " am sorry"would have served Kanye best. I think that is why I am willing to give Serena a break. Yes, history will remember her for saying she would shove a “@#@$%ing ball down the &*$%ing throat of a line judge in the U.S. Open. The day after the tirade, she appeared genuinely contrite.

Serena’s apology is in three parts; a direct apology to the person she berated, an acknowledgement that she was wrong and a stated desire to learn from it and move on.

You can’t ask more from her or anyone else. Did she offer it because she has a lot to lose if she doesn’t? Don’t all of us who do stupid, rude things have a lot to lose if we don’t apologize? At least her second go at it appeared heart felt.

Properly fitting clothes replace distress of "OL" readings

2009-09-14T22:00:00.002-04:00

My clothes are no longer tight.

I do not grunt and struggle to get out of a chair or off the floor.

I can touch my toes. I can see my toes...

I am lighter and more flexible than I was in March when I visited my folks in Lakewood, N.J. I’ve lived in Lakewood for about six weeks now. Size-wise, I still consider myself a dancing bear.

But I definitely feel smaller. The question that haunts me is this: How big was I? Where are the haters when they are needed? Haters would tell me that I was so big I needed a personal zip code.

I asked my mom; I see where I got my diplomacy skills. “Well, you’ve been working hard (to lose weight) since you’ve been here,” she said. “That is all that matters.”

All my dad would say, after my prompting, was “Trust me, you were big!” But he won’t go any further.

The last time I was weighed was in mid-August. I was 306 or 308. It depends on which scale you believe. Both were in doctors’ offices. Both were those old stand-up scales. I stepped on a couple of digital bathroom scales in August. They registered OL, over limit or over load. Sigh.

Apologies to whoever found their scale smashed into bits in the wake of my visit.

“Can a scale really jump from two stories to its death, David?”

“Well, I’ve been in the news game for a while and I’ve seen all kinds of strange…Oh, look at the time! ‘Gotta go! ‘Gotta go!”

The most I ever weighed in my life was 330 pounds, according to my health records. That is NFL lineman big. That was in 2005 and, in about four months, I dropped to 270 after a doctor expressed concern.

But I was not on prednisone back then. Prednisone and methotrexate appear to be keeping at bay my lung and heart sarcoidosis symptoms (I’ll know more later this month), but prednisone makes me ravenous. Between mid-March, when I started the prednisone regiment, and mid-May I went from 295 to 321 pounds. I ate everything under the sun and asked for seconds. Thirds. I was on 60 mgs of prednisone, a high dose. There were other fun side effects, too, including mood swings. Not good. I got my appetite under control and weighed in at 297 in mid-July. However, it was difficult to maintain the discipline needed to fight the drug-fueled urge to eat all the time. So, I got up to 306-308...OL on the electronic bathroom scales! Damn...

However, these past few weeks...I think I finally got it together. I walk two to four miles a day, work out with barbells, TRY not to eat after 9 p.m.

Also, my prednisone dosage has been cut in half. This might be the edge I need to get a handle on the diet. I am reading about how hard it is to lose while taking prednisone, but, experts and patients alike, also say it can be done.

I am trying hard because reducing and controlling my weight is key to curbing sleep apenea, heart disease, making it easier on my lungs. Too much is at stake.

I visited a new internist four weeks ago. He recommended I weight myself every day to gauge progress. I chucked that idea. Instead, I try on clothing. I do that once a week. Slowly but surely, stuff that once was tight now fits.

Starting today, I am going to cut off food after 7 p.m. We'll see how it goes.

I will be weighed again on Sept. 22. Whatever the new weight I will let you in on it. I will be visiting a new cardiologist and, after my new routine, I anticipate encouraging news.

Whatever happens, I’ll write about it, draw inspiration from the event and will keep fighting to get things right.

Celebrities could do more to raise awareness of sarcoidosis

2009-09-11T09:00:00.003-04:00

(Whose column is this? Read on...)

"Hi, Uncle Phil! Do you get that a lot?!"

"Yes, bii-a-atch, I do get that a lot."

That's what I think to myself anyway.

"Why, yes, I do!" That is what I say with an odd and affected mix of weariness, excitement and sarcasm. "I get that all the time, thank you so very much!"

The 'Phil' the woman busing tables at the Wendy's on North Broad Street in Elizabeth, N.J. is referring to is the character Philip Banks in the sitcom The Fresh Prince of Bel-Air. He's played by James Avery (The pic of Avery is from a fan site displaying autographed photos of celebrities).

Uncle Phil! a woman shouted to me on the streets of New Haven back in 2005

Oh, shut the @!#$ up, I responded...rather un-Uncle Phil-like, I know.

Truth be told, it doesn't really get deep under my skin. James Avery seems like a nice enough guy. And Uncle Phil, in the world of the sitcom, is well respected, educated, smart (educated and smart don't necessarily go together; the character is both), successful, wealthy, married to a beautiful woman... It's all good for Uncle Phil.

My basic problem is this: The guy who plays Uncle Phil is 20 years my senior! We share surface characteristics. Both of us are tall, big and bald. Both of us have salt-and-pepper (heavy on the salt!) beards.

This ain't a case of 'they-all-look-alike' either. Black people AND white people have shouted "Uncle Phil!" as I've walked by. It does not happen often, but it happens enough. Like I said, I don't mind, but look closer. I don't look like James Avery, as handsome as he is...;)

(Pic: Angela Bassett in a red dress) Surface characteristics, surface traits...Natalie Portman, Megan Fox and Natalie Wood are slim brunette women. Do they look alike? Marilyn Monroe and Madonna are blondes. Do they look alike? Orprah Winfrey, Angela Bassett, Hallie Berry. Can people not tell the difference between the three? Sorry...I can't come up with any examples that include guys. But see where I am going.

The point is this: Look past the surface and you'll see individuals, not people who remind you of characters or celebrities.

(Pic: Marilyn Monroe glam shot) I do wish I was a celebrity, though. I would use my good name to raise awareness about sarcoidosis and other autoimmune diseases. I am impressed with folks like Karen Duffy, who have talked candidly about battling the disease. I know the folks at aspire.com are hoping that a celeb with the disease steps up to the mic and talks about it. Maybe they will appear on Oprah.

Hmm...come to think of it, maybe I should try to pass for James Avery...I'll call Oprah, tell her I have a new project, get on the show and then tell the world about this disease, raise money for a cure, yada-yada-yada...

Oh, well, a fellow can dream - and shave off his prematurely gray beard!

...Food for thought...

Today, we remember the men and women who perished in the 9/11 terrorist attacks.

We stand united in fighting terrorism and making the world a better place so it does not happen again.

We should also consider possible causes for sarcoidosis and other autoimmunue diseases, which affect millions of people. Consider this report on a study in the wake of environmental pollution after the collapse of the Twins Towers. Click here for more.

Giving Gram a helping hand

2009-09-09T09:00:00.001-04:00

She shields her eyes with her left hand during the gunfights and while blood squirts all over the place.

Her arm’s gotta be tired, I think as I turn from the sweet carnage and mayhem that is District 9 to check on…my 84-year-old grandmother.

“Are you OK?” she asks me wide eyed. “Yes,” I chuckle and turn back to the sweet carnage.

Hey, don’t dog me for taking Gram to see District 9. It was her idea! Hey, she took me to the premiere of Jaws. I was 10 years old. Remember that opening scene, when the girl gets eaten by the shark? I still can't swim in the ocean.

And Gram made my mom take her to see Inglorious Basterds. Gram said she could not make heads or tails of the Jewish revenge fantasy epic. My mom was left speechless by Queinten Tarantino's violent imagery.

“I didn’t really notice much,” Gram said when I asked about the movie. Um…they depicted the scalping of a man. Knife to scalp, cutting and peeling the head past the fat meat.

What does this have to do with sarcoidosis? Plenty. I have cleaned my grandmother’s apartment and taken her to a doctor’s appointment and the movies. I have taken her to dinner and lunch. She lives 50 miles away and I have driven some 700 miles to see her since I moved home six weeks ago.

Six weeks ago, I could not have done any of this stuff without breaks to catch my breath and a long nap. But I am exercising every day to help my heart and lungs. I will have tangible proof of my health status in two weeks when I go to see my new cardiologist. The specter of a defibrillator implant still hovers over my head. But I am expecting to see improvements. I feel better. My clothes fit better. I move better, stand taller. Prednisone and methotrexate be damned, but they are doing the job of keeping symptoms at bay. I still want off, though. Still too many side effects.

To get well and maintain wellness, I am eating right, breaking a sweat while walking trails in the Pine Barrens and (moderately) pumping iron, trying to keep stress at bay. I am also being kept buoyant by the unconditional love of my family.

As recently as six weeks ago, I could not go a whole day without a long nap. Now I can’t catch a nap with a rod and reel. And I am thankful.

My mother visits my Gram every week and takes her shopping, to dinner, movies. My Uncle John, same thing. I am glad I can help. I know I am supposed to be resting, but reconnecting to family is very important to me and anything I can contribute, I’m going to do it. When I was a kid in the late ‘60s early ‘70s, my Gram would take my brother Todd and I everywhere. She’d take us shopping along Broad Street (Yo! Anyone remember the old Fanny Farmer’s candy store on East Broad Street in Elizabeth, N.J?! Chocolate cigars!). We walked everywhere. Back then it was hard for my little legs to keep up with Gram. She is a short woman, but man could she step. The steps come much slower now and they are unsteady, so I let her lean on me.

She knows I am sick and tells me to pace myself. I remind her to do the same thing.

She helped raise me so I will be there for her until the end.

…I'm just saying…

Note to New England Patriots quarterback Tom Brady: After the Patriots traded all-pro defensive tackle Richard Seymour to the Oakland Raiders, you described pro football as “unconditional love.” Unconditional love is when you love someone so much that you stick with them through thick and thin. You don’t trade or discard them because you can get a younger , cheaper version of the person.

What the Patriots did to Seymour is happening to a lot of American workers. No Fun League players have a union and contracts, but most of their money is not guaranteed and they are treated as well as regular, old at-will employees. Ain't no love there. Just Ask Brett Favre…and ask yourself when a younger QB with a strong arm is nipping at your heels during a training camp in your future…I'm just saying.

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Resisting the call to join the Rude Culture

2009-09-07T09:00:00.274-04:00

No, @#$% you, buddy! And get out of my way!

I am on the verge of speaking like this all the time (and using the real F-word, not symbols). I am on the verge of being sucked into what I consider the New Jersey Rude Culture. I am trying to resist the Culture the way a good Jedi fights the pull of the Dark Side of the Force.

Rudeness plagues the nation. Just watch the news and what passes for health care reform debate. Nearly 70 percent of people questioned in a 2005 Associated Press-Ipsos poll said people are ruder than they were 20 or 30 years ago. The poll was referenced in a recent Chicago Tribune article about rude behavior in college classrooms and beyond.

I've been back in New Jersey, the place of my birth, for about six weeks. Here, rude has been elevated to an art form. The mix of foul language, hand gestures and obliviousness of fellow human beings - often fueled by hyper-caffinated drinks - is much more intense here. People who experience it for the first time are often left speechless.

I am experiencing 'Jersey rudeness for the first time in three years. I am often left speechless.

People here shout words that mean nothing into their cellphones, shattering the peace of all around them. Parkway motorists drive their cars up the ass of yours because you are driving 75-80 miles per hour in the slow lane...In the slow lane. People shout you down during conversations to make their point. Loudest and most obnixious wins. They are pains in the butt.

And, I admit with sadness, I can go there. I can definitely act like an asshole, but I try not to. Part of it has to do with getting control of my heart and lung sarcoidosis. I need to cool out and be chill. A calm, relaxed mind is essential to helping the body heal. there is no way around it.

I also think being decent, and respectful is the right thing to do. I see myself as a gentle giant because of nature and nurture. My mom and grandmom taught me to live by the Golden rule. I am a man who tends to keep to himself, minds his manners, keeps the peace and only lifts his hand in defense of the weak. The gentleness thrived to a degree in Greater Lansing, Michigan and Chicago.

I have no illusions about either place. The Midwest has its share of nuts, bullies, bigots, misogynists, all the people we should despise. But Midwesterners are quite polite. They say 'thank you' and 'please' and allow people the right of way. They hold doors for each other, offer to carry this or reach for that. They are respectful of personal space. The smaller the town, the politer they are. In Chicago, I managed a group of reporters who exhibited Type A personality traits. Those reporters could dig for stories and were as relentless as any reporters I've ever worked with, but they were also nice, decent people. They would bare teeth and unsheath talons, but knew how to put them away after hours.

These days, here in New Jersey, the teeth and talons are bared and unsheathed 24-7. (The customer service at Barnes & Noble in Howell, N.J., is a refreshing respite. I give this store props because it is a cool place to write. I love the vibe. Folks there are pretty polite, especially the baristas). And I am assuming that New York and Connecticut are as rude as ever, too. Curiously, you can still find polite people in Manhattan – so many people living there are NOT from there, you know?

I am trying to maintain my public politeness, but the Rude Culture might be winning. Every time I try to get out, it pulls me back in. Warning: I can be a real asshole. My cousin Dwayne likes to say that some folks are not assholes. They are the cheeks, the pimples on the ass, the crack…The entire ass. Yeah, I can be that, I fear.

I just want to be a good guy. I really do. New Jersey, you could really help, you know? Be decent, for crying out loud.

I'll try harder, too.

Give that man a 'Bruschi'

2009-09-04T15:20:00.002-04:00

Image by Getty Images via Daylife

(Note: This is an updated and revised version of today's column. It was rewritten after a much-needed workout. Cleared my head. Thanks for reading. - David)

This "Bruschi" is for everyone who will be on the move this Labor Day Weekend.

Whether you are working out, walking a beach, whatever. I salute you if you move or are motivated to move. While the Bruschi I offer you sounds like the tasty libation, obviously it is not. It is actually the story of Ted Bruschi, a New England Patriots middle linebacker who recently retired.

I love pro football. I am a New York Giants fan (I am overlooking the Giants preseason loss to the Pats. We beat that team when it counted). I am excited to be back in a region where I can simply stumble into people who are Giants fans. No looking for that special NY/NJ bar in the middle of Chicago, or in the middle of nowhere. Here, I go to the super market, people wearing Giants gear. I go to the 24-7 store for coffee, people talking Giants. Awesome.

I love the New York Giants. I hate the New England Patriots. Understand this: I only hate New England sports teams (I won't even hot link to one of their teams. You like Boston teams? Find the link yourself). I love the region of New England. I especially love Greater New Haven, Conn. Lived there for years and want to return. However, I cannot cheer for any team from New England. Can't do it. I am from 'Jersey. It might be in my DNA to hate teams from New England. I’ve tried, but I cannot help it.

However, I am a Bruschi fan because it is inspirational. He was a tough defensive lineman in college. The Patriots drafted him in the third round and converted him to linebacker.

Bruschi was no Lawrence Taylor (left) or Mike Singletary (right). Taylor was a beast. It's hard to imagine Taylor doing anything in life except destroying offenses. Really.

Singletery, now the second-year coach of the San Francisco 49ers, was a fierce tackler. He was/is bright, articulate and a proven leader. Bruschi...I always saw him as an everyman. His surname even sounds like the alcoholic beverage of choice for blue collar Americans...what is left of blue collar Americans anyway. The guy studied hard, worked hard and, when called upon to do so, devastated opposing offenses.

Bruschi's story is one of many from which I draw inspiration to continue my fight against heart and lung sarcoidosis. In 2005, he suffered a stroke. Slow down, they said to him. Take it easy, they said to him. At least you already have one Super Bowl under your belt. I am sure he rested for a while, but he also fought back, reclaimed his health and went on to play in four more Super Bowls with the Patriots. He has five SB rings.

Today, I did not want to work out. I spent the whole week with family, including running my grandmother on errands, and I was spent. However, I forced myself to walk nearly four miles and pumped bar bells because I want to get well and because I know there are people out there who are worse off than me and would kill to just be able to walk down the hallway of a house without getting winded.

I’ve been there. In March before I was hospitalized, I could hardly make it up a flight of steps. I would take breaks after simple tasks like showering, brushing my teeth, washing dishes. I could not scrub a bathroom or mop a floor without taking many breaks. Now I am trying to drop weight (prednisone be damned!) so I can run.

I work out with the likes of Bruschi in mind. I won’t play in a Super Bowl and I am cool with that. The game of life is longer than four quarters and I am in it to win it.

Oh, and I hope I get into good enough shape to start a contracting business helping companies as Office Linebacker. That would be awesome. Chick here to see!

Enjoy the Labor Day Weekend.

Arrrgh...Stay tuned for an updated blog

2009-09-02T17:13:00.000-04:00

Hi. Sorry I am late with the update. I'm experiencing....technical difficulties.

However, I will update as soon as possible. Thanks for your patience and peace.

- David McClendon

Good-bye, for now, to favorite food

2009-08-31T09:00:00.004-04:00

This is a photo of me and one of my most favorite foods, a hot dog.

Not just any hot dog. A Texas Weiner. There is a rich history behind this tasty treat.

My good friend Charlotte Fiorito shot this photo on July 27, my birthday. I turned 44. That day, I also said good-bye to to hot dogs in an effort to save my life.

Hot dogs are loaded with fat and sodium. I am taking prednisone to reduce symptoms of heart and lung sarcoidosis. A major side effect of prednisone is weight gain through the retention of water and sodium. It is difficult to say good-bye to the foods you love when you are on prednisone because another prednisone side effect is insatiable hunger. Prednisone patients are ravenous 24-7.

The last time I had hot dogs was July 27. I ate a Texas Weiner with Charlotte while we were on a remember-back-when tour of Plainfield, N.J. That Weiner touched off a craving. I had to have more hot dogs. Later that night (or early morning July 28?) while my folks were asleep, I raided the basement freezer for more.

“This is crazy. I really should not be eating this,” I thought to myself as I nuked the dogs, pulled the relish out the fridge and got the rolls ready. “This is crazy,” I said as I slathered the buns with mustard and relish, put the dogs on and “This is crazy…”

Can’t think full mouth…

After eating those dogs, my lower legs swelled so badly I had to lie down and prop up my feet to reduce the swelling. I was actually afraid to check my blood pressure. It would have been too depressing. If I stand a chance of beating this disease and controlling the prednisone side effects, I thought to myself, I have to rein in this appetite no matter what.

Diet and exercise became the goal. I’ve been walking with my dad and lifting weights every day at least five days a week. I walk a few miles every day and lift weights five days a week.

I won’t weigh myself just yet. I have an important doctor’s appointment on Sept. 8. They can weigh me then. Last time I was weighed was three weeks ago and I was 306. I am now trying to gauge success by how my clothes fit. They are getting loose, which is a good sign. I also gauge success by blood pressure reading results. When I moved home, my readings were in the 150s/90s range, with a new in the 170s/110 (that was at wake up…sleep apnea)…Now the readings are in the low 130s/80s, with a couple in the 120s/70s range. The readings are much closer to the 125/85 my doctors want me to maintain.

(This photo shot on Aug. 20, 3-1/2 weeks into working out. Shirt, pants are no longer tight!) I’m feeling better. I am moving better. I assume I am losing weight. We will see on Sept. 8.

It’s tough to say no to hot dogs. We as a nation consume billions of them. They will be front and center at the majority of cookouts this Labor Day weekend. How can one resist. The key, for me, is moderation. I have not had one in more than a month now. I can do one. It will not kill me. After that, the only dog in my life is Tobie, my parent's beloved golden Labrador.

Stoic realizes he needs people, says 'thank you'

2009-08-28T09:00:00.003-04:00

(I shot the updated profile photo last week. It looks weird to me because I am not wearing glasses. I will probably update the photo next week. I will keep the beard. My mom likes it)

I was reluctant to write about my fight against sarcoidosis or to join any on-line support groups that might keep me buoyant during the struggle. Boy was I wrong about both. Writing this blog/column keeps me sane and focused. Writing and sharing is a release valve for me, a guy does not like to reveal personal pain or weakness. It is my nature to conceal it. It is both strength and liability.

It is an asset because I am resilient and can keep pushing forward in the face of adversity. And I mean damn near any adversity. Knock me down and I will get up and I will be stronger because of the experience. However, the ability to hide pain, sadness, distress, etc., also isolates. Sometimes one just needs to fire up a rescue flare or pick up the phone and say, “I am coming home,” or, “I really need your help today.”

I have always admired stoics. One of my first heroes was Mr. Spock from Star Trek. Ruled by logic, not emotion. Loved that about him. I also admired the unflappable captains who went down with their ships or the movie cowboys and soldiers who sucked their teeth and said, “It is just a flesh wound” after taking a shot in the gut.

I can even appreciate the black knight in Monty Python And The Holy Grail...Um, sir, that is more than a flesh wound. Yeah, that needs...treatment...

If the past six months has taught me anything, it is this: I need folks as much as they need me. And that is cool. I need my family. I have seen a marked improvement in my attitude and physical well-being since moving to Lakewood to be with my parents. I can walk a few miles a day, lift weights. I am still…big…My family and friends are sweet. They will not say that I am fat. I am cool with it: I am fat! But a lot of it is prednisone-influenced. I am sure the pounds will come off as I continue the slow tapering off the medication.

I need and appreciate my family and need and appreciate the good people I have met through http://www.inspire.com/. It is a support group for people with sarcoidosis and other autoimmune diseases. My mom suggested I join a support group back in March and I was like, I do not need a support group. I have my family and friends and Northwestern. I do not need anything else.

I was wrong. I did need to connect with people who understand what I am going through because they are in the same situation. And in many cases, some of them are worse off. That makes me more grateful for the small victories I have had over this disease. I know it will be with me for the rest of my life, but I will keep fighting it because, from where I sit, I am not only fortunate to be alive, I am fortunate to be able to walk three miles a day and lift weights. Words can fail to describe what some of my new friends endure. Each one of them is embroiled in a Hamburger Hill-type battle. The enemy that is a disease has the advantage. Yet these people keep in touch with each other via email and message board and keep each other going.

So I decided to take time out to say thank you to the good friends I have met at http://www.inspire.com/. One asked me why I am doing what I am doing. What motivates me to blog and to fight?

I have basic motivations: I want to live, I do it to honor my late brother, Todd (I’m sure I will write more about him later), and I do it for everyone who cannot do it.

Have a great weekend.

"You can pick your nose," but should you?

2009-08-26T10:20:00.029-04:00

I am staring at this kid and trying to figure out the book he is reading because…he is digging up his nose. He is going for it. I did not know a pointer finger could be shoved so far up a nostril. If it were an Olympic sport, the with floppy dark hair and wearing a Ramones T-shirt would bring home the gold.

I wrote the preceding while sipping a cup of coffee and checking e-mail at the café at the Barnes & Noble in Howell, N.J. I wish I knew which book the kid handled before he left – oh, it was brand new and he did not buy it. He put it on a shelf somewhere in that store. Chances are no one will catch anything from it, but…hey, the whole episode was disgusting no matter what. I cannot get the image out of my head, so I share it with you. Misery loves company.

The nasty little scene reminds us of the need to be vigilant during the upcoming flu season. It is especially crucial considering the federal governments warnings about the HIN1 flu, commonly referred to as swine flu. On Monday, a White House advisory panel issued a grim prediction that the swine flu could infect half the U.S. population this fall and winter, hospitalizing up to 1.8 million people and killing some 90,000 Americans. That is more than double the number of Americans killed during an average flu season.

According to the report from the President’s Council of Advisors on Science and Technology, the virus could cause symptoms in 60 to 129 million people, most of whom would seek medical attention.

Three-hundred-thousand of the sick could need intensive care, which will overtax ICU units across the nation, according to the report. The seasonal flu causes about 36,000 deaths and 200,000 hospitalizations each year. Because swine flu is new and humans have not developed defenses against the virus. Many more people could be infected and many more could die.

The fear is a pandemic. U.S. officials are trying to use tempered language when talking about a possible pandemic, but the world is quietly preparing for one. History teaches us that it is better to be safe than sorry.

I worry about the coming flu season because I have heart and lung sarcoidosis and take medications that fight the symptoms of the disease by suppressing the immune system, preventing the scarring of vital tissue. I am more susceptible to infection while on these medicatons so I do what I can to avoid coming into contact with cold and flu germs, like staying away from places were crowds gather.

(Crap. I want to see Living Colour in concert. I'm gonna have to get my Michael Jackson-amongst-the-crowd on day and wear a surgical mask that day. I've got to see 'em play no matter what!)

The government is racing to get the swine flu vaccine to the market to immunize as many people as possible. A batch will be available by mid-October – and there is a rush to get a batch ready by mid-September. Immediately, there will not be enough for all who want it. People should take advantage of the vaccine, especially older and younger people and people with compromised respiratory systems. Check with your doctor first.

People can also take basic steps to keep from catching and spreading germs and viruses:

* Hand washing. That means soaping them up and vigorously rubbing them while rinsing under warm running water. The U.S. Centers for Disease Control says it is crucial to wash hands to prevent illness. However, results of an on-line survey getting tons of news media play show that many people haven't changed their hand washing habits in light of the swine flu outbreak. Fifty-four percent of the people that responded say they "wash their hands no more or less frequently" in public restrooms because of the virus. In addition, 87 percent of respondents wash their hands after using public bathrooms, but one percent of those only rinsed with water.

* Stay at home if you get sick.

* Cover your mouth when you cough or sneeze. Cough into your sleeve - the so-called Dracula cough - and not into your hands.

I’m sure the CDC would also include don’t put booger-drenched fingers all over items that other people might want to handle. Are parents teaching children anything these days? Are we as a society just trying to become as nasty and repulsive as we can?

I’m printing out a copy of this column and going back to the Barnes & Noble in Howell. If I see that nose-picking kid - I say he's a kid; he's in his early 20s. He nose better (I could not resist) - I’m gonna give him a signed autographed copy.

Rude? Maybe it's the prednisone. Or maybe I just don't want someone else's snot on my new purchase.

Remember the old saying, "You can pick your friends. You pick your nose. But you cannot pick your friend's nose?" Well, stay outta your nose, too. Or at least wash your hands afterwards.

Addictions come to life after death

2009-08-24T09:00:00.017-04:00

(Today's column to dedicated to Don Hewitt, the founder and executive producer of "60 Minutes, who died Aug. 19 at age 86. He and his crew, including the late, great Ed Bradley, are major influences).

Commercials featuring the late pitchman extraordinaire Billy Mays still air and they are freaking me out.

From the idiot box, his image glows, hawking cheap little garden weeders. He filmed the commercials weeks before dying from sudden cardiac arrest and, well, there were all those gadgets to sell, so…

The deaths of Mays, Michael Jackson and Diane Schuler have held the nations' attention for weeks because they are tragedies with shocking twists.

(Left; Mays with a fan) The revelation that drugs – in Jackson’s case, the power anesthetic propofol and cocaine in Mays case - contributed to his death was shocking for many. But there were hints of problems for years. Research about the large pharmaceutical bills he owed...Something was up.

Mays, with the booming voice and trademark thick, ultra-black beard, appeared healthy. Then he died from SCA. Then the toxicology report was released, stunning many.

Nothing, however, prepared the news-consuming nation for the July 26 fatal accident involving Schuler. The 36-year-old Cablevision executive and mom drove her vehicle the wrong way along the Taconic Parkway and crashed, killing herself, her daughter, three nieces and three men in the SUV she hit.

Right away, Schuler was a news media darling. The 24-hour cable news beast and its insatiable audience served up and swallowed the surface story: The life of a straight, married suburban mom and executive tragically cut short. All that was true, but there was so much more.

(Left; Road on which Shuler fatally crashed) The Taconic is deadly! Fix the highways so this never happens again!, the shocked and grieving public demanded. State and federal officials scrambled to make it so. Then New York state police released the report that staggered the nation: Schuler was drunk and stoned the day of the fatal accident.

The King of Pop's people knew Jackson was fighting addiction. At least one of his siblings(probably La Toya, the chattiest and least talented one) told news media that the Jacksons were planning an intervention for Michael in 2007. For whatever reason, it never happened.

However, the families and friends of Mays and Schuler are like most people close to people with addictions. They did not see any of this coming. Or they are/were in denial.

Read this carefully. There are no judgment calls in this column. I appreciate the fact that Jackson and Mays elevated the profile of sudden cardiac arrest (I still think it is vital for people to be aware of SCA. I first became aware of it because of pulmonary and cardiac sarcoidosis. I try to do everything I can to keep the ticker and lungs as healthy as possible). I was as shocked as everyone else was when authorities said Schuler’s blood-alcohol level was 0.19 percent - or more than twice the legal limit. A New York Times reporter estimated that Schuler had consumed the equivalent of 10 shots of 80-proof liquor. She also had six grams of undigested alcohol in her stomach when she died.

The New York Times also reported, “There were high levels of a chemical found in marijuana, enough to pinpoint her last use at 15 minutes to an hour before her death.”

Cocaine use contributed to the heart disease that killed Mays, according to the report from the Hillsborough County, Fla., medical examiner. His wife discovered his body at their Tampa condo on June 28.

(Left image from a time when the King of Pop had the world by the you-know-whats) Jackson was...unique. He changed skin color before our eyes. He owned a pet chimp whom he dressed in a space suit. He sometimes wore a space suit. He made the wearing of a lone, sequenced white glove a fashion statement.

And he wrote and performed some of the most beautiful, brilliant pop music ever. His art will be enjoyed, mimicked and studied for generations to come. Unfortunately, his life will be publicly dissected until the end of time. But can there really be any more shocking revelations about Michael Jackson?

Mays and Schuler presented as ordinary people. Next door neighbors, if you will. And we are always shocked when we learn that our neighbors harbor dark secrets.

We have to remember that they are human. We need to be there for them if they are in need.

"Keep on doin' what I'm doin' 'til I can't do it no more"

2009-08-21T09:00:00.002-04:00

(Hey is it me, or is my head shrinking? My face, I mean...It is! I think the moon face is finally waning. Thank goodnesss. I was starting to look like a mocha Stay-Puft Marshmellow man...)

Today it is hazy, hot and humid. The temperature was already in the high 80s at 8:30 a.m. this morning. The air is so thick and damp it almost feels like being smothered in a heavy wool blanket that was dropped in a warm puddle.

Still, I walked three miles today and pushed myself through an upper body workout using barbells. I did not want to do it. Neither did my lifting partner, my father. However, we like the pay off, so we kept pushing.

“It’s hotter today,” my dad says as we make it down the trail near the house. “This is the hottest day of the week.”

“It is,” I huff. It’s all I can say. I was conserving my breath for the walk. Sometimes I talk when I walk but not today. Too damn hot. I can feel every breath, but I push through (Below: That is me somewhere on the trail behind my folks house in Lakewood).

My docs are surprised I walk as far as I do and that I lift weights. I have heart and lung sarcoidosis. I am taking prednisone and methotrexate to control the symptoms of the disease, and I take other pharmaceuticals to manage the side effects of prednisone and methotrexate. Six months ago, there was no way I would have been able to push through a walk or a work out. Six months ago, I was in a hospital bed at Northwestern Memorial Hospital listening to doctors and their diagnosis. I vowed I would live better if I got out of that hospital and so far have been able to keep that promise. I am allowing for mistakes, I know I am human, but I strive with my goal in mind.

My dad says he is proud of me for coming so far. His friends who know people with sarc were warning him that I was coming home toting an oxygen tank. He was relieved to see that I did not have one. And I have no intention of every using one. One pulmonologist actually wrote me a ‘script for one. I fired her. That was five months ago. I’ll make sure I forward her a copy of this blog (Below: I am pumping a little iron. I'll be sure to send this to my former pulmonologist at Weiss Memorial Hospital).

I am grateful that I am able to do what I do. I know there are tens of thousands of people who have autoimmune diseases and they cannot endure physical activity. I will do this for as long as I can. It is tough, but I am finally seeing the benefits of moving so "I’m going to keep on doing what I am doing until I can’t do it no more…"

That lyric is from my favorite Isley Brothers song, "Keep On Doin." They rock and I have to move whenever I hear that song. Gotta drop a cool pop culture reference in my column somewhere.

Have a great weekend.

To (expletive here) or not to (expletive here)...

2009-08-19T09:00:00.013-04:00

The headline is a play on one of the most famous lines in world literature, “To be or not to be, that is the question…” The headline also teases and invites the reader to fill in the blanks.

The question I ask myself is a simple one: To use profanity or not? I must admit that I like using profanity. I am good at it, too. I had good teachers, including my childhood friend from Elizabeth, Plainfield, Fanwood and Scotch Plains, N.J., and many of the journalists in every newsroom in which I worked or visited. A lot of journalists can let the blue language flow with aplomb.

However, I am trying to curb my profanity because….because my mom reads this column, also her friends. Also, I am tempered by my training and 20+ years of experience. If this column ran in a traditional “family” newspaper, it would have to be expletive free. Children rarely read newspapers, but they still reach a broad audience that includes folks who find blue language upsetting and offensive. Can’t lose any more readers! I would have to use the word “expletive” in place of the actual expletive.

Some folks do not curse at all. I admire that. Someone once told me that smart people don’t curse. They can find other words to express themselves. That is bullshit. If I smash your thumb with a hammer or I stomp your foot, what are you going to say? “Oh, David, why would you do such a cruel and dastardly thing?! Hell no! You’re gonna rip some nasty words and you're gonna try to kick my ass.

After being diagnosed in March with lung and heart sarcoidosis, I briefly went through a time when I stopped using profanity. It was all part of the new me…

I was in a hospital bed and said to myself, If I get some more chance I will never, ever…fill in the blank. I was released after 10 days of treatment and it became, If I get one more chance, I will try to never, ever... A month into taking the drugs that fight and suppress sarcoidosis symptoms, it was, Where the ---- are my keys?! (some of these ‘scripts make me forgetful, and, What the ---- happened to my face?! (Prednisone causes moon face and I really hate that shit…No waxing eloquently there. And no fucking pun intended).

See, that’s what I like about the power of profanity. When used right, it drives home the point. After all these years, George Carlin's seven words you cannot use on television still works. Tell a Richard Pryor joke - poignant stories all - without blue language. Pryor describing the time he set himself on fire while freebasing or the reason he stopped using the N-word after visiting Africa...drop the controversial, provocative and saucey language and the power is lost.

Of course times have changed. Many of today’s comedians think they are funny just because they can string nasty words together.

I am keeping basic promise I made to my family, friends and myself when I first started writing this blog: I will do all I can to get well. I have quit smoking. I exercise every day. I take my meds with the goal that they will do their job, I will do mine and one day - on one glorious day - I will not need these meds.

But give up the use of profanity? I can’t. I am writing fiction and some of the scenes and characters don’t work with an occasional f-bomb, or worse….combinations of words including the F-bomb! I do plan to mind my manners. I won’t swear around, (most) women, senior citizens, in houses of worship... I know some folks feel that philosophy is antiquated, but manners do not go out of style.

So, I’ll watch my mouth and my writing most of the time. But occasionally I am gonna let the you-know-what fly because it feels right or drives home the point.

People, public places are hazards for 'germaphobes'

2009-08-17T09:00:00.002-04:00

(Thanks to all who sent me their thoughts and ideas about prednisone and weight loss. I appreciate the tips and common sense advice and know they will help. By popular demand, I am posting another photo of Tobie. He has nothing to do with today’s column, but I’ve been receiving email about him. Be cool, folks. Tobie’s head is gonna swell and he’s gonna demand his own blog! Thanks again. Please read on…)

I am a situational germaphobe. I have a mild, quirky case of mysophobia.

Remember the 10-Second rule or the Kiss-it-up-to-God rule? I was introduced to these rules well before I was 10 years old, so I learned it before 1975, like, between ’73 and ’75. Anyway, the rules work like this: if you drop a piece of candy or food on the floor, just make sure you pick it up and consume it before 10 seconds elapses. Or, pick it up, kiss it and hold it to the heavens, presumably for a blessing…

All the kids I knew were down with that. Not me. That candy, food or whatever was contaminated and rendered inedible and deadly after coming into contact with microorganisms. That’s what happens when you give a kid with an overactive imagination access to a microscope at a formative age. Luck of the draw. You might get a scientist or you might get me…a kid that sees all the small squiggly stuff that attaches itself to bigger stuff…Ugh…

So imagine me now, in my 40s, taking drugs that battle symptoms of an autoimmune disease. Now, put that man in a position to use a public library restroom. Comedy ensures.

I went to the Lakewood, N.J., branch of the Ocean County public library last week to do some research for my parents. When I pulled into the parking lot, I had to go to the bathroom real bad (damn diuretic). So I walk into the joint, find the bathroom and then…wait…I flash back to my visit earlier in the week with my new internal medicine guy based in Long Branch...

My new internist and I talk about my heart and lung sarcoidosis. We talk about my walking and weightlifting. I get the sense he is impressed and he tells me to keep it up. I tell him I have no choice. I ask him about the upcoming flu shot and what, if anything I can do to avoid getting sick. The prednisone and methotrexate I take to suppress sarcoidosis symptoms also suppress the immune system. “Avoid crowds,” my doc says. “How do you avoid crowds in a country with a population of 300 million, doctor?” I ask. “Go to the mall off hours,” he says. “Don’t go to hospitals or places where sick people congregate. Wash your hands often and thoroughly.” I do, but I notice the world does not,” I say. “I use hand sanitizer, too,” I say. “Good,” he says. “Keep it on you.”
Image via Wikipedia

OK, back to the public library in Lakewood and the men’s room there (I have a couple of weird tales out of three visits to the Lakewood branch. Lakewood is…an interesting place…on many levels. More later).

Anyway, the library men’s room….I discreetly use my foot to push open the door – everyone touches that door, I ain’t touching it with my hands! I take care of business, I soap my hands, wash them…thoroughly, which few people do. I dry them with paper towels, toss the waste into the receptacle, consumed by thoughts of the little project I am doing for my folks, I grab and open the door and…

What is this slimy ----- on my hand?! I rushed to the sink, soaped up my hands, blasted the hot water and tried not think about what someone might have left on that doorknob. Opened the door – this time using a paper towel and went back to my car for my little jar of hand sanitizer.

I wonder how much a biohazard suit costs…

I'm trying to be cool about the suppressed immune system thing. I have been on prednisone and methotrexate for almost six months and have not developed so much as a head cold. I remind myself that I need to be careful not paranoid. Still, when I step into a crowd I see microbes not people...

I say “situational” because some things freak me out and others don’t. Germs from a public restroom, restaurant glasses or public phones (who uses a #$*&ing public phone anymore anyway?!)…I freak out. Quietly and to myself, but freak out nonetheless. My cell phone? Friends and family’s cell phones? I don’t freak.

Same germs, I just know the people. I know it doesn’t make sense. Beauty of being human…Sure does keep me on my toes.

Wash your hands!

Cutting oneself some slack

2009-08-14T09:00:00.006-04:00

(I shot this today while following my dad along a trail in Lakewood, N.J.)

Thursday, I had a blood pressure reading of 120/80 – the lowest my blood pressure has been in more than a year. My doctors’ goal was to get it to 125/85. I beat that.

Good for the heart and good for the mind. I was worrying a lot about the heart. This development is especially exciting because I am still on prednisone for my pulmonary and cardiac sarcoidosis. I am walking three miles a day and lifting light weights. I am sure that, combined with a reduction in the amount of prednisone I am taking – helped lower the blood pressure.

I’m trying to lose weight because I have obstructive sleep apnea, too, which makes blood pressure soar. I sleep with a CPAC - short for continuous positive airway pressure device (a mask attached to a tube attached to a small, quiet motor - but I want off of it. I am trying to lose weight even though prednisone is working hard against the goal.

Oh, I should give you an update: The pull-ups thing was a miserable failure. I gave it my best shot, but my body was too weak to make good on that promise. I sulked for a while about that and then accepted the fact that I would have to start from scratch to rebuild myself.

My goal is still there. The method is now more practical. Crawl before walking. Walk before running. In New Jersey, I started with a 1-1/2 mile walk. Now I am up to three miles. Every day. I walk with my dad and/or Tobie most of the time. I walk an additional 1-1/2 miles at night with my mom. Tobie’s in tow, too.

My dad caught me obsessing about my weight the other day – prednisone rage. My frustration was off-the-hook. I knew it and could not help myself. I was obsessed with the feeling of failure and futility. “From where I sit, this is a good day,” he said. “Your blood pressure is normal for the first time in a year and your clothes are fitting differently, and you know it.”

He was right. My clothes were looser. I was standing taller. My ample belly…was finally starting to shrink. The water retention, the back fat (prednisone really stinks)....it will go as I continue reducing the prednisone...

Dramatic change will not occur in a weeks or two months. I have to be patient and diligent.

And I have to cut myself some slack.

Injecting civility into the health care reform debate

2009-08-12T09:00:00.002-04:00

(Good news. My prednisone dosage has been cut by 10 mg.

I am taking 30 mg daily, down from a high of 60. We will see if the new dosage combined with a once-a-week dose of 10 mgs of methotrexate keeps the sarcoidosis demon in check. I am just happy to be taking less prednisone. As good as it works, it also can cause many side effects and it is a race against the clock to get off the drug before some of the nastier problems pop up. I feel fortunate to be in this position. There are tens of thousands of people out there on high dosages of the drug and struggling with it. I am rooting for all of you. Read on...)

I have yet to make up my mind about Barack Obama's health insurance reform proposal. I am reading the 1,000-page document knowing it will likely change before - if - it becomes law.

I do not know what to think of the opposition’s claims (although I do dismiss Sarah Palin entirely because her communication style boarders on hysterical. "Death panel," Sarah? Please...Until she stops the hyperbole I just cannot listen).

I'm glad the debate is on. That's part of the process. No bill, especially one of this magnitude, should clear hurdles without the input of the people. However, I have been watching video of the “town meetings” on health care reform and I know this: The nation could use a chill pill. The yelling, finger pointing and name-calling makes for good TV, but it does nothing to get across the facts. It does nothing for compromise or consensus.

A debate does not have to include yelling. Heck, one can argue without yelling. Look up the definition.

Don't get me wrong, I write this for myself as much as anyone kind enough to read it. I can be a hothead supreme - I'm a newspaper editor; you can bet your ass I can shout down pretty much anyone. I would love to go around battering folks with my words and thoughts, getting them to bend to my will.

Then I wake up and realize that dream is a nightmare. I want to be right all the time, but know I am not. It behooves me to listen. Really helps with the learning thing. And who can trust yes-men, anyway?

Also, all that yelling causes unhealthy stress and tension. People seize up when they see you. You are slowly dying inside every time you wind up throwing a verbal fastball.

If the nation continues down the road it is on someone is going to get hurt or killed? Yelling begets finger-pointing, begets pushing and shoving, begets...spraying a swastika on a U.S. representative's office door because he supports the president's plan? Where do folks want to go from there?

So, for the health of the parties listening to you, for your own health, for the nation’s health, chill out, breathe deep and let us get back to this health care reform debate.

Let us inject a little civility into the process, if we Americans still understand the meaning of that word.

'Suffering' to wellness

2009-08-10T09:00:00.004-04:00

(''Life moves pretty fast. You don't stop and look around once in a while, you could miss it’. – Ferris Bueller in Ferris Bueller’s Day Off

John Hughes was one of my favorite storytellers. My favorite Hugh’s film is Ferris Buerller’s Day Off. Hughes dies of sudden cardiac arrest last week while out on his daily walk. He was 59. Hughes probably never saw it coming. The problem with sudden cardiac death is that half of the time the first symptom is a heart attack. Stay on top of your health. See your doc and ask about risk factors and tests to determine whether you are risk. And rest in peace, John.)

This one goes out to one that I love, my uncle Art. I am writing this on Saturday morning after learning he is back the hospital. He has been intubated. He cannot breathe on his own.

Long story short, Art has COPD, chronic obstructive pulmonary disease. Things are not looking good for him. He is on more than a dozen medications, has oxygen tanks and inhalers all over the house.

And he still smokes.

The nicotine in cigarettes is as addictive as heroin or cocaine. And in some people, the river of addiction runs deep.

My river flows deep. I smoked for 20 years knowing that cigarettes kill. I belong to the first generation to learn about the dangers of smoking in grade school. When my brother Todd and I attended Nicholas Murray Butler High School in Elizabeth, N.J., we attended an assembly at which a guest speaker told us about the dangers of smoking and nicotine and the horrors of living with respiratory disease.

We stared in horror at a pickled cancerous lung in a jar (That was disgusting and too much for kids. And whose lung was that anyway?).

When school let out, we ran home, cut up our mom’s cigarettes and flush them down the toilet. I imagine that she wanted to beat the hell out of us for doing that, and who could blame her? Those freaking cigarettes did not grown on trees. And this was in the 70s, the era before people thought anything and everything was child abuse, so there were no calls to the Department of Child of Family Services. In the ‘70s, if my brother and I had called DCFS, a Paul Mall-addicted social worker would have showed up at the door and would have said, “Those damn kids did what? I’ll help ya bury them!”

Anyway…addiction…I want a smoke right now and I am fighting lung and heart sarcoidosis (unfortunately, I cannot go to the hospital to visit Art because the key drugs treating my sarcoid, prednisone and methotrexate, also suppress my immune system leaving me especially vulnerable to all the nastiness lurking invisible in the air of medical units). Breathing can be a chore. I cannot remember the days when I did not think about breathing. I think I have to go back to spring 2006.

And still, I want a cigarette.

The last time I saw Uncle Art, he was smoking. He sneaks out of the house buys a pack of cigs and smokes in his car or on his terrace. My Aunt Lorraine knows, but what can she do? Addiction is overwhelming and the addicted are impossible to help unless they want to help themselves. Success rates for intervention – I do not give a damn how easy things wrap up on TV talk shows – are bad.

The only way to overcome addiction is suffering through it and knowing that the craving, sometimes very strong, will be with you for the rest of your life. I am taking Chantix to take the edge off my craving, but I still think about smoking every day. Sometimes it is overwhelming. For example, the more I write on this subject the more I want a Malboro(my brand, but I'll smoke anything).

However, I know that one more smoke is one more nail in my coffin and I refuse to go out that way. I am not carrying around a damned oxygen tank in the future I visualize for myself. I am lighter, stronger and kick boxing in the future I visualize for myself. So I suffer through the craving, the feeling of a little, hairy, foul-smelling personal demon impatiently tapping me on the shoulder, demanding I give in.

And I am praying and rooting for my Uncle Art and Aunt Lorraine.

'Quest for a lid' update

I now realize that my major malfunction was my inability or unwillingness to try on clothes. I hate shopping for clothes. I do not necessarily hate hats. I hated hats because I could not find one that fits. I could not find one that fits because I was in too much of a rush to try them on. I am changing my MO. I’ll take a moment to see if the stuff fits, which means I won’t be frustrated later when I get it home.

Now I have four new hats. All of them fit. If I do not lose them, I will be ready for next spring and summer.

Prednsione rewards and rage

2009-08-07T09:00:00.006-04:00

(Because of prednisone, I often feel how this guy looks)

A meal of Taylor Ham, bacon, Brown Sugar-Cinnamon Pop-Tarts and Gatorade has all the vitamins and minerals a growing boy needs.

The man whose shopping cart accidentally slams into another person’s cart at the super market deserves a bloody-pulp beat down!

If a tractor-trailer driver cuts you off on the thruway, leap from your car onto the truck’s hood, punch through the windshield, and grab the driver and POUND, POUND, POUND!

Welcome to my prednisone world. All apologizes to whomever I offended. Or offend from this moment forth.

The preceding thoughts are steroid-fueled representations of rage and/or despair. The feelings are partners in a twisted tango going on in my head. I fight to keep them there, but sometimes they get out.

Weeks ago, I wrote about art-rocker Kim Deal who in a recent interview essentially said she dug prednisone's side effects. I wrote that I did not. There was nothing to like.

However, I am embarking on one of the most creative spurts I have ever had and am on the verge of finishing my first novel and well into my second. I have shared my work with friends with divergent backgrounds and interests - 35-year-old Asian-American business woman with Alabama roots and conservative leanings, 26-year-old moderate white male from Dallas, 26, year-old white liberal-minded female from Michigan, 40-year-old black female apolitical health care industry expert from Chicago - all have read it and want more.

That bodes well for the future success of my projects, I reckon. We'll see. The ideas are mine, but where is the focus and energy coming from? Prednisone-induced mania, I suspect. So that is good.

The other side though is despair. There was a time early in my fight against lung and heart sarcoidosis when I would not get out of bed for days except to go to the bathroom. I would cry at the end of a movie or TV show no matter how hokey.

And then there was/is rage. The news, small talk, cartoons; they can all make me very, very angry….Not good.

Prednisone’s side effects are legendary. I started on 60 mg daily and am down to 40 mg. I am hoping we can cut it to 20 mg soon and then get to the magic number of between 5 to 10 mg because side effects are minimal at that dosage. Go here for a full list of side effects, the ones that give me the most trouble are:

- Insomnia, euphoria and, in some cases, even mania. My music collection and the way my VW GTI handles an open stretch of high way is way too exhilarating right now. The high...I never want it to end.
- Weight gain
- Abdominal pain, blurring of vision
- Pain in the hips or shoulders
- Acne
- Sleeplessness
- Stretch marks on the skin
- Swelling in the face (@#$%ing Moon face!)
- nervousness
- increase in appetite
- hyperactivity

So why the heck would a doctor administer a drug with so many side effects? Because it is a life-saving drug that works so well that physicians argue the advantages outweigh the disadvantages. They prescribe prednisone and other drugs to counteract prednisone side effects. Doctors treat these side effects of prednisone symptomatically, since it is not always feasible to stop prednisone administration even when severe side effects occur.

Prednisone comes with a warning urging the taker to tell family, friends and coworkers that they are on the drug. That is how volatile the drug makes some people. I warned people and also stay alert to squash my outbursts. But sometimes the words just fly out my mouth. Examples:

- I called a man an 'über-tard' and practically challenged him to a fistfight for stepping in front of me in line at a Wa-Wa.
- I yelled at a city Hall greeter chomping on a mouthful of sandwich while giving directions the bathroom. “Take a lunch and eat! Don’t spit mustard on people asking for directions. That’s not what we pay you for!”
- I screamed at a nurse at Northwestern for screwing up one of my prescriptions. Something got lost in translation between Chicago and Howell, N.J., and the delay left me seething, wanting to topple display cases and turn over cars. Aaaargh!

And, I have thought about covering my parents’ house in chocolate and trying to eat it. Just cuz! I am ravenous. All the time.

Whew….prednisone sucks. For the most part, I am able to control outbursts because I am aware that I am under the influence of a powerful drug. There are millions of folks out there on prednisone for variety of reasons. They keep themselves under wraps and so can I.

But sometimes the insults rip. So, in advance, I apologize.

Quest for the right 'lid'

2009-08-05T09:00:00.013-04:00

(Note: A little thank-you to my mom, who copy-edited this piece. I need a copy editor. Everyone does!)

What did Oliver Hardy, Magilla Gorilla and I have in common until recent?

We all wore hats waaaa-ay too small for our heads.

But I solved my problem. The others are on their own.

I finally found some cool hats after going on The Quest for The Prefect Hat, or lid as we used to call them back in the day (When I was a kid, I picked up that slang term from old men so it must go back quite a ways). It was a quest I loathed because I have always had trouble finding hats that fit. I am just not good at it.

Also, I hate wearing hats during the summer. But I have no choice thanks to a couple of prescription drugs I am taking in my on-going war against sarcoidosis.

The main drugs employed in the battle are prednisone and methotrexate (I've got a good one coming Friday about prednisone-fueled rage. Anyone will be able to relate. Stay tuned).

I am also on a number of drugs that counter prednisone and methotrexate side effects. Prednisone causes blood pressure to soar and I am maxed out on several hypertension medications. One of the medicines, a diuretic, warns patients to “avoid prolonged or excessive exposure to direct sunlight and/or artificial sunlight while taking the medicine.”

What happens if you don’t follow the warning? Well, you could become overheated - it feels like being cooked alive in a broiling pan - and dizzy like I did while tooling around one day earlier this summer in my Volkswagen GTI with the moon roof open. After prolonged exposure to the blazing sun, you’ll also feel like you want to pull over and fight the feeling to vomit and pass out. That is what happened to me last month. So my quest for an acceptable hat began in earnest.

The first lame-assed hat I wore this summer was a beige ball cap with Chicago written on it. Got it from Jewell-Osco in Andersonville in Chicago, just a two-block walk from my apartment. The cap was nondescript, and that was how I was trying to roll. I didn't want a flashy hat, just something that would allow me to travel under social radar (to travel as low and light as a 300-pound man can, anyway). I wore the hat for a few weeks. On the streets, to stores and even to a big downtown block party. I finally asked how it looked. I ditched it after my friend Megan told me it "was a little small" and not working at all.

I wore that stupid hat for weeks! I Um, friends....next time I do something silly like that, JUST TELL ME! I promise to do the same for you.

Next, I bought a cheap tan, Army cap from an army-navy surplus store in Chicago's Uptown neighborhood (I miss Chicago. If you have never done so, visit. It is awesome). No one laughed at the hat, but you could tell it was only being tolerated. Ultimately, I tossed it because portions of the fiberous lining would stick to the sides of my sweaty head when I took it off, giving me what I refer to as the "George Jefferson half-fro." I can't have that, Weezie! "

Last week, the search continued in 'Jersey. I walked through racks of lids at Target and Wal-Mart in Howell. No luck. The hats were sized for shruken-headed, delicate-looking, lady-boy posers in ulta-ultra skilly jeans. You know those guys, the ones you see in funky coffee shops. Dirty clothes-wearing, greasy hair-having, sitting around and earnestly sharing deep thoughts about nothing... Not my style.

I’m not into ball caps, especially the ones with professional sports team logos. I am a fan of the New York Giants, but I am not a 14-year-old and I am not on the roster as a defensive tackle so I will not wear the hat. I attended Temple University and did have a beautiful cherry-and-white ball cap with a stylized "T."

But it was too small (bought it on-line without paying attention to size) so I gave it to my dad. Also gave my dad a pretty chill Yale ball cap (bought at the Yale bookstore without trying it on..pattern here). Both caps fit him well. He looks good in ball caps. And finding a hat that fits well is crucial right now because I am struggling with moon face and increased weight because of prednisone.

(I do have one ball cap I cherish. It is black and emblazoned with a Kalamazoo Football logo. It was given to me back in 1989 by a cool kid from Kalamazoo College in Kalamazoo, Mich. I wear it in the fall and people definitely notice it - one even offered me cash for it. Nope, reminds me of my good buddy. I ain't sellin').

Finally, I tried Kohl's on Route 9 in Howell, N.J. Eureka! Hats big enough for my head. And they were 1/2 off! I settled on three; a green army-style hat that gives great cover in rain, sleet or snow; a broad-brimmed straw hat perfect for protecting ones self while lounging on the beach. Big enough to have a hit of western flavor, but designed for city/suburban sensibilities.

My favorite is a simple, beige knit fedora. It's a classic hat that harkens back to the days when people cared about how they looked. Once upon a time in America people pressed their clothes did not wear pants that drooped off their asses or cut off their circulation.

It was great to find some cool lids. Finally.

Consider rest if you are in a position to do so

2009-08-03T09:00:00.020-04:00

(Today's column is dedicated to Kathryn Foster Perry, who died on July 28. She was the mother of one of my dearest friends, Lisa Ann. Mrs. Perry was intelligent, kind, gracious, gentle and generous, attributes possessed by her daughter. All who knew her will miss her. We will also rally around Lisa.)

It is said that sporting events are metaphor for life.

But when's the last time a ref granted your request for a time out after you flubbed a presentation or said something off-color to the boss or colleagues? Many of us wish we could stand up in the cubicle and call "Time Out" to devise a winning strategy during a TV commercial break.

Well, you can, formally or informally, force a time out by just walking away from the job. Of course, you should let your boss know what you're doing. Just don't walk away...

If you need time to recover from serious illness or injury you should take it. It is easier said than done. It takes planning and determination - it is hard to sit idle while your contemporaries are continuing with careers - but it might be necessary.

A doctor at Northwestern Medical Faculty Foundation in Chicago said to me that it "would be a good idea" for me to take off the rest of the summer in light of my bout with lung and heart sarcoidosis. We are trying to see if a course of drugs - prednisone, methotrexate, other stuff - will stem the tide of the disease. We keep checking the heart, which shows evidence of weakness, to see whether it can recover/rebound from the illness. There is improvement. If it does not get stronger, docs want to install an implantable cardioverter defibrillator in my chest to guard against sudden cardiac arrest. But as I just wrote, the heart is improving, so I want to give the drugs and exercise a little more time to work.

When it comes to rest, I'm taking the doctor's advice. I am interesting in getting well for the long term, not pleasing a boss in the short term. I have learned first hand that no matter how important you are to an organization and hire ups, you are replaceable. Heck, they just might fold your job to save money.

Your first loyalty is to yourself and your loved ones - family and friends. They are going to miss you when you are gone. And we don't want to leave sooner than later. So, if you need time to heal, consider a strategy that allows you to rest so you can be here as long as possible:

Get financial affairs and health care in order - and adjust your budget to live on less

Develop or find a support network. It might be family and friends. It might be a support group at a hospital or place of worship. Do not just sit alone or with people who do not understand or are unsympathetic to your situation.

Really rest. Get to know your body, when it needs sleep, when it needs fuel. Limit alcohol consumption, quit smoking (I did. Finally took the Chantix. Cold turkey is too much, especially with so much going on right now). Exercise, but check with your doctor before you begin a regiment.

Help others. Volunteering at a pet shelter, soup kitchen, tutor children; find an activity in which to participate so you stay active - remaining connected to community is important. Avoid becoming a recluse. Such a state is difficult from which to return

Learn a new skill will recouperating, if health and strength and allows. When you re-enter the workforce, you can show potential employers you were not idle.

I thought long and hard about the pros and cons of taking a time out for health after reading that Scottish golfer Stephen Gallacher is seeking an exemption from the prefessional golfers' European Tour so he can rest and heal from a serious flare up of sarcoidosis.

Good luck, Stephen, and all the others brave and fortunate enough to take a time out to better their lives...

Taking advantage of the home field

2009-07-31T09:00:00.016-04:00

By the time you read this, I will have kissed the New Jersey Parkway. I will have walked a beach and stared across the Atlantic to the horizon. I will have eaten a handful of the best cranberries in the world.

I am home. New Jersey. The Garden State. ‘Jersey.

For the record, no one I know from here says the line made famous by "comedian" Joe Piscopo: “I’m from ‘Joisey. Are you from Joisey?" There’s more to the state than The Sopranos, the oil tanks and chemical refineries along the northern corridor of the Turnpike, the crook politicians (Illinois, you've got nothing on the Garden State in that department)...

If you’re an out-of-stater, believe what you will. New Jersey has enough people anyway. Stay wherever you are. The mob or the smell might get ya!

I’ve always loved New Jersey, but I have not lived here since the mid-1980s. However, in my fight against sarcoidosis, I have made a tactical decision. I need and want the home field advantage. In sports, the homies have followed their team for years and the crowd is always loyal. Even when they are booing you for doing bad they are waiting for you to do well – and then they cheer loud and hard.

The hometown crowd’s support can spur a team to victory. It can inspire a battered boxer to get off the ropes and dig deep into his reserves to knock out his opponent.

Right now, I need my biggest cheerleaders, my mom and dad. They were eager to have me close so they can monitor my progress and help me in anyway possible. I am grateful – no, I thank God – for my parents. Not everyone has a rewarding relationship with his or her parents. Some folks have no one at all.

I began thinking about this in March after a 10-day hospital stay to deal with flaring pulmonary and cardiac sarcoidosis. I flew home so my folks could see that I was OK.

Everything about my ‘Jersey stay felt right. More than right. It was invigorating, rejuvenating. For the first time in more than 20 years, home was more appealing to me than the open road and new places to live in and see.

I'm tough and have always been able to handle life's challenges. Isolation, illness, pondering career options. Handling each problem on its own? No sweat. Bundle any two together, Bring ‘em on.

The three together? No thanks. Too much. It took me a while to realize it, but there's no shame in needing help and letting folks know it. Especially when you have people who are waiting for you to say the word so they can get involved. Word!

Now, I am no more than an hour or two from my loved ones in the Tri-State area. I’m looking forward to reconnecting with everyone. New York City and Philadelphia are an hour north and south of me, respectively. Greater New Haven, a 2-1/2 drive along tree-lined highways (Take the Garden State Parkway, go across the Tappan Zee Bridge and grab the Hutch north. Don't take the New Jersey Turnpike-Interstate 95 if you can avoid it. Ugly).

I lived in Chicago for the past year. My friends there, especially Megan Cottrell, Felicia Yonter, Steve Barrett, Tyler Via, Tim Yager, Fernando Diaz, Adrian Uribarri, Peter Sachs, Alex Parker, Kim Barrett, Matt Schad, Patrick Boylan (there are others but I hate Academy-award style thanks-yous, so thanks to everyone!) helped me during the most challenging time of my life. I was terrified, confused and alone in March when my sarc went berserk. My friends in Chicago checked on me daily and kept buoyant my spirit. Some drove me around when I could not drive myself. Some made me laugh.

They encouraged me to walk when I wanted to sit and sulk. Especially Megan and Felicia. They made me walk my ass off. I am definitely better off because of that.

They inspired me to recommit to my fiction and this write this blog (but my mom had the idea first, I must say).

My Chicago peeps, I am forever indebted to you and I will be back to visit as often as I can. I want you to visit me, too. The door is always open. You'll always have a place to crash.

But I am excited to be home. I liked kissing the New Jersey Parkway. I like hearing, seeing my mother and father at ease.

I love being home. I feel 10 years younger.

Saying yes to walking opens up possibilities

2009-07-29T09:00:00.008-04:00

(Hi, readers. Enjoy the blog. And tune in Friday for a special announcement. And remember to consult with your doctor before exercising to see what routine might be right for you. Enjoy and peace.)

Every drug I take in my battle against sacroidosis warns that it makes you drowsy or dizzy. I admit that since April, five months into this pharmaceutical regiment, I have been tired and listless. I just want to lie down, pull the blankets over my head and sleep until…whenever. Just sleep.

Instead, I just say yes.

No, silly, not to drugs and certainly not to the side affects of prednisone, methotrexate, Carvedilol, hydralazine , lisinopril and the others.

I say yes to movement, in this case walking. When I do not feel like moving, I move. And when asked to do something physical, I do it.

I am in Lakewood, N.J. with my parents. It took 14 hours to drive here. The morning after the drive, I was beat. Almost beyond exhausted. My dad had energy and invited me to join in on a routine: walking the dog. It is a two- to three-mile walk through a wooded area. Hills, mud, dirt. Challenging for someone who is re-learning how to breathe.

Wanna come? He asked.

No, I admitted to myself. But I said yes as soon as I was asked, jumped up and we hit the trail.

And it was great. Another bonding moment with my dad and the family dog, Tobie, a golden retriever. We walked, talked, laughed. I realized that while I was winded – country walkin’ is sure more challenging than city walkin! – I was going to be better off for it.

Later that day, my mom got home and we walked 1-1/2 miles with Tobie (This dog gets a serious workout. He has legs of steel!). That was a great bonding moment, too.

I took ill in mid-March in Chicago and spent 10 days in the hospital. After I was released, two friends of mine who were also co-workers, Megan Cottrell and Felicia Yonter, made me move. I told them the drugs made me listless, so they had me take baby steps. Let’s walk two blocks to the coffee shop. Megan would say. Let’s take Guinness – the Shepard-mix that belongs to Felicia and her finance, Steve Barrett – for a quick walk.

Baby steps, but always moving. Because the small, unsteady steps can develop into a strong confident stride. Evidence that one is getting better. Stronger.

I say yes to movement because I want to go forward and not backward.

Waning Moon (face)?

People this week are telling me that moon face (the swelling and roundness of the face caused by long-term prednisone use) might is shrinking. Really, I can’t tell. It looks like a big, brown full moon to me…but thank you. I remain hopeful that the condition will soon abate because my docs are reducing the amount of the corticosteroid.

We’ll see how things go.

It's never to early to prepare for looming pandemic

2009-07-27T09:00:00.006-04:00

(Today is my birthday. I usually don't make a big deal of it, but it is especially sweet considering everything I went through these past few months. I am not celebrating it so much as using it to reflect on the past and plan for the future. I will treat myself to a moment at the beach. I hope your day is a good one, too - David)

Summer has finally hit the East and Midwest. This week, forecasters say we’ll be basking in the bright sun and enjoying temperatures in the mid-80s. Thunderstorms are on the horizon, too.

Between rain drops, we’ll be playing in the parks and beaches and grilling, all under a blazing sun.

Good time to look forward to flu shots. Seriously. There may be big problems looming just over the seasonal horizon.

The annual flu vaccination season begins in September or as soon as vaccine is available and continues throughout the influenza season - December, January and beyond.

The Centers for Disease Control recommend flu shots for the following:

• Children aged 6 months up to their 19th birthday

• Pregnant women

• People 50 years of age and older

• People of any age with certain chronic medical conditions

• People who live with people with certain chronic medical conditions

• People who live in nursing homes and other long-term care facilities

I decided to get vaccinated for the first time back in 2006 after a health scare. I did not get the flu in 2006 and 2007. I am currently taking predinsone to fight a flare up of pulmonary and cardiac sarcodosis. I had been experiencing a serious sarc flare up for about a year before it was properly diagnosed in March (I was first diagnosed in 2005 but it was deemed dormant).

Prednisone is helping with my symptoms, but it and another drug I have been prescribed, methotrexate, suppress the immune system, making the body vulnerable to infections, including the flu. I am particularly concerned about H1N1, the swine flu, which reared its head in April and is expected to return with a vengeance this fall.

I am happy that my docs are reducing the amount of prednisone I am taking, but I want off completely so I can get a flu shot. I am going to talk to them about alternatives just in case and will share that information when I have it.

Health experts fear that H1N1 might spread to nearly every corner of the globe much like the Spanish flu of 1918. The Spanish flu hit in two waves, first in March of 1918 and then in August. By then, it had mutated into a deadlier virus that ultimately killed an estimated 50 million to 100 million people. Most of the victims were health young adults, experts say. That pandemic ended in 1920.

H1N1 is expected to make a return early this fall. In time for school.

The World Health Organization predicts that some two billion people will catch H1N1. The outcome is unpredictable because the strain is new. The healthy, the sick; all are vulnerable to this new strain of flu. If, when, H1N1 returns and if people start to drop like flies, there will be a panic run on vaccine. That will make it more difficult to get shots.

Vaccines will be available for H1N1 and other strains of flu, so more than one shot may be necessary. In layman’s terms, predicting flu outbreaks is tricky, so a couple of vaccines are being prepared.

Do yourself and your loved ones a favor: Get your shot as early as possible. Go to your doc, a clinic, Target, Wal-Mart or wherever shop is set up to administer vaccinations.

Check with your doc to see if you are allergic to egg products – used to make the vaccination. Double-check to make sure there aren't other complications that might prevent you from getting the shot.

But if nothing but planning stands in the way of the shot, mark a calender to get the a flu shot as soon as possible.

While you're at it, remember to wash your hands and cover your mouth when you cough or sneeze. That’s how the deadly virus is spread.

For good of country, embrace debate sparked by prof's arrest at home

2009-07-24T09:00:00.004-04:00

(This will be the routine for now on: Health blogs Mondays and Wednesdays.

Free-ranging observations on pop culture, politics and news media on Fridays.

Actually, there is a health-related blurb at the end of this essay.

Read the Friday Special and have a great weekend. Monday: The flu and autoimmune disease)

I applaud President Obama for taking to task the Cambridge, Mass., police officer who arrested Harvard professor Henry Louis Gates after a neighbor’s call about a man breaking into Gates’ home.

It turns out the man was Gates. Guess the neighbors don’t know each other very well.

The cop, Sgt. James Crowley, is white Gates is black (Note to news media: Gates is not just a prominent black professor as so many TV news reporters described him. He is one of the most prominent professors in America and is black. He is one of the best, period. Look him up.

Also, according to published reports, he was able to show ID proving that he was at his home. The prof was arrested for allegedly sassing the cop. The charge was eventually dropped.

According to a Boston Globe report, Obama said race “still haunts us. And even when there are honest misunderstandings, the fact that blacks and Hispanics are picked up more frequently and often time for no cause casts suspicion even when there is good cause. And that’s why I think the more that we’re working with local law enforcement to improve policing techniques . . . the safer everybody is going to be.’’

As a reporter, I covered police in Michigan and New York. As city editor and deputy metro editor, I coordinated police coverage in New Haven and Greater Lansing. I count a couple of police officers as friends and they told me, not for attribution, that cops engage in racial profile. They see it as a necessary evil to get bad guys off the street. Need proof of the racial disparity? See this example. There’s more out there, too.

Crowley’s supporters argue that the cop is not a racist. He taught racial classes on racial profiling at the academy. Cops who are black even vouch for him.

One thing I learned very young is cops are not black, white, red are yellow. They are blue, gray or whatever color uniform they wear. They stick together. They rarely say anything against their brethren even if their brethren are wrong.

Not all, but many hide behind a thin, blue wall of silence.

Obama, who lists Gates as a friend, did not characterize Crowley as racist. Neither would I. But I know that racist acts can be committed by people wearing smiles and speaking in whispers.

At the very least, arresting a man for “breaking” into his home is bad police work. Cops have wide latitude when making arrests. But why not also teach a cop to treat with respect a wrongly indentified “suspect.” Crowley says Gates yelled at him. The instructor did not try to slug the officer. I could understand the arrest if that had occurred.

Perhaps this incident will lead to a bigger and long overdue debate about American racism past and present. Yes, Obama’s election to the White House is a big step in so many ways in this country. But racism and discrimination still exists and they are not going anywhere until we as a nation finally do something about it. The nation has to stop treating it like the ugly family secret that might be forgotten if no one talks about it and openly deal with it.

I wonder: The neighbor who called police on Gates…Would he or she have dialed 9-1-1 if they saw a white man trying to find a way into the house? Or would they have helped him?

Karen Duffy’s rebound

This is a short and sweet salute to Karen Duffy (I had a crush on her back in the day), whose career is proof that people with sarcoidosis can overcome the disease and thrive.

Duffy, a former MTV VJ and Revlon model, was diagnosed with sarcoidosis in the mid-90s. Now she is back hosting a new TV show, Surprise Vacations, on the Fine Living Network at 8 p.m. ET Sundays. Duffy's show gives deserving people a surprise free vacation. She tells USA Weekend that she has been filming the show for the past six months while also studying to be a chaplain at the New York Zen Center for Contemplative Care. “One of the things we learn is care-taking for the caregiver,” Duffy says, “people who are taking care of a loved one or sick child.”

Duffy, 48, has her own illness to deal with - sarcoidosis is an inflammatory disease affecting her nervous system. It caused partial paralysis. She helps others who are less fortunate. “My parents have always really led by example, (showing) that the only thing worth doing is what you do for others,” Duffy says in a recent interview with USA Weekend.

“I think that has really helped me through my hard times. I mean, my life isn’t perfect and I’ve got to deal with this big lump in my head all the time and deal with chronic pain issues, but I’m so grateful for the days that I feel good,” Duffy says USA Weekend. This fall, Duffy has a small role in Wes Anderson's Fantastic Mr. Fox, which also stars former boyfriend George Clooney.

Here, she discusses her fight with sarcoidosis as written in her book, “Model Patient: My Life As An Incurable Wise-ass.”

Dropping weight to be a healthier, better 'dancing bear'

2009-07-22T10:00:00.006-04:00

I consider myself a dancing bear, but my doctor and the CDC say I am obese.

OK, I am trying to drop weight. I will drop weight. However, I love being a "dancing bear." Football coaches use the term in describing big offensive and defense linemen who have strength, power and agility. Much like the famed dancing bears exhibited at carnivals back in the so-called Good Old Days.

Big signifies strength. Power. Carry the weight well and you will rarely be tread upon. I am a writer and truly believe the pen is mightier than the sword…but...Well, let’s just say there are a few occasions in life where I was grateful that I was big, strong, quick and able to handle myself.

Never as a bully, mind you. Simply protected myself and friends.

But, 321 pounds was way too much for my 6-3 frame. I gained that weight during prednisone-fueled feeding frenzies after my March hospitalization to treat heart and lung sarcoidosis. Prednisone and methotrexate are reducing the inflammation

Americans are the fattest they have ever been at any point in history and black folks lead the way in this startling category, according to a recent report for the Centers for Disease Control.

The CDC says 36 percent of African-Americans are overweight. Blacks and whites in the South and Midwest are fatter than their blacks and whites in the West and Northeast. Hispanics in the Northeast had lower obesity “prevalence” than Hispanics in the Midwest, South or West.

The study, the Morbidity and Mortality Weekly Report, examines data from 2006 to 2008.

“This study highlights that in the United States, blacks and Hispanics are disproportionately affected by obesity,” says Dr. William H. Dietz, the director of CDC′s Division of Nutrition, Physical Activity and Obesity, in a press release. “If we have any hope of stemming the rise in obesity, we must intensify our efforts to create an environment for healthy living in these communities.”

Disproportionate amounts of African Americans are poor. Fatty, unhealthy fast food and snacks are cheap and abundant in neighborhoods. Fresh produce and other good foods are scarce.

My situation is driven by prednisone. I know how to eat right, exercise, watch the consumption of empty calories (soda, sweets, chips, etc). For the most part, I stay away from them. I just have to ignore the side effects voice in my head and do the right thing for my health.

I'm rededicating myself to watching what I eat. Friday, I weighed in at 297.8 pounds. I’ve dropped 23.2 pounds – yes. I am claiming the .2! It’s mine! – since the end of April. Not bad if I say so myself. I'm on the right path.

The goal is 250 by the end of the year. A lot of weight to lose, but, according to body-mass indexes, still obese for my height. However, the BMI’s do not take into account my big boned frame. So I must protest.

I’m dropping weight to reduce stress on my lungs and heart, to lower my blood pressure. I have always been big guy, but I admit I need to shed pounds.

Still, I want to be a dancing bear. Just a lighter one.

"Process Not Product"

2009-07-20T10:00:00.004-04:00

(Yes! My pulmonologist cut my prednisone from 50 milligrams a day to 40. That, in turn, is helping reduce my blood pressure. My BP readings now are in the 130s/90s (normal BP is less than 120/80)instead of the high 140s/100s when I was on the highest dosage of prednisone (60 mg). We’re controlling the BP by maxing out on Carvedilol, lisinopril and hydralazine. Can’t wait to finally reduce those drugs, too)

Facebook.com applications are silly fun. One of my favorites allows people to share their “library” with friends.

I put together a Top 11 Favorite Books List (two James Baldwin books are on the list; could not choose between the two). Also on the list are works by E. L. Doctorow, H.G. Wells and Howard Zinn. Eclectic.

Zen in the Martial Arts by Joe Hyams is also on the list. Strictly speaking, Zen is the Mahayana Buddhism belief that enlightenment can be attained through meditation, self-contemplation and intuition rather than through faith and devotion. My mind reconciles and dovetails both.

I bought a copy of the book when it was published as a paperback in 1979. I was 15 and studying karate at the time. I wanted more than a physical experience. I was studying the martial art to sharpen my mind, to transcend the possible.

I have read that book one thousand times. It is yellow from the sun and elements, its spine is split in two now, as if it is the slimmest two-volume set ever published.

I still pull it out when I am troubled or in need of righting my course. I have been frustrated with what I have characterized in my head as the slow progress of healing. I should be grateful, though. My pulmonary sarcoidosis is abating (the way I breathe, the way my breathing sounds indicates that, my docs say.)

My cardiac sarcoidosis, which is affecting my left ventricle, is improving, too, but at a much slower rate. The option is to place a defibrillator in my chest to guard against abnormal heart rhythms that could cause cardiac arrest. I am not interested in having a machine installed in my chest. Just can’t do it. Not right now anyway.

So in my frustration, I turned to Zen In Martial Arts. The author uses the backdrop of the martial arts and experiences to show a way to a better, more rewarding life. Each chapter focuses on Hymans’ learning a valuable life lesson through his martial arts studies.

He uses a cast of characters – including martial art legends Bruce Lee, Ed Parker and Bong Soo Han and Hollywood stars - to explain how Zen principles can lead to greater control and inner peace.

The chapters are short, some only one-page long. A two-pager called “Process Not Product,” is just what I need. In it, Hymas writes about the frustration he felt when he was learning Hapkido. He was an older, stiffer man amongst younger men who seemed to be picking up the moves with ease. Hymas was ready to quit and his master, Bong Soo Han, recognized that and spoke to him.

You will never learn to do any endeavor properly unless you are willing to give yourself some time. I think you are accustomed to having everything come easily to you, but that is not the way of life or the martial arts,” the master says to Hymas.

“I am patient,” Hymas replied.

“We are not talking now about patience,” says the master. “To be patient is to have capacity for strong endurance. To give yourself time is to actively work towards a goal without setting a limit on how long you will work.”

That, to paraphrase Hymas, touches the core of my problem. I keep setting hard deadlines for health results. I want off prednisone and methotrexate in August, six months after being hospitalized.

However, that is not going to happen. What I need to do is focus on the process, take the meds, exercise, eat right, stay positive, and the “product” – getting well and off the meds – will take care of itself.

I have to remember the fight will be long and I have to stay focused to win it.

Will the King of Pop ever get to rest in peace?

2009-07-17T10:00:00.010-04:00

(Greetings. I did say I might sometimes write about whatever moved me. I am a journalist and observer of pop culture. When moved by pop culture, I will write. The unrelenting Michael Jackson news media feeding frenzy moved me. Bear with me. We are back to sarcoidosis and health on Monday)

It is time to ratchet down the coverage of Michael Jackson.

Do not get me wrong: I am all for following and breaking legitimate news about The King of Pop.

The demand for all things and news Jackson remains insatiable two weeks after his death attributed to sudden cardiac arrest. According to a Reuters report this week, his music tops the pop charts.

Undoubtedly, there will be legitimate news when toxicology reporters are released; cops go after doctors, the on-going saga of settling the estate, the fight for custody of his children, his unreleased music, etc.

All legitimate news. But….

Photos of his sheet-covered body on a gurney from truck to morgue

Pics of him with the oxygen mask

The “new” video of him on fire – old video people, different angle

The rehashing of old news “Why Michael didn’t want to do the Pepsi ad (in the freaking ’80!)

Come on….Ghoulish.

Watching the news media descend on a big story is often like watching hyenas ripping up a corpse.

The quality of what is passing as stories – especially on cable news networks and these “entertainment-infomercial” shows, including Entertainment Tonight - is abysmal.

No wonder audiences are chucking their newspapers and turning off their TV news programs. There is too much fluff coverage anyway, and now this crap. It almost makes me embarrassed to be a journalist. I can only hope our good work is elevated over much of what is passing as Jackson reportage.

I am also embarrassed for many consumers. The demand for anything Jackson fuels the media feeding frenzy. I just wish we journalists used more discretion going after “stories.”

There are other stories out there. Important stories being ignored because the notebook- and video-camera-totting throng is dwelling in a perpetual state of Neverland.

News media, go find those stories. Audience, give a damn.

Rest in peace, Michael, although it would seem no one wants you to do so.

There's little to like about prednisone side effects

2009-07-15T10:00:00.003-04:00

Kim Deal “kinda” likes prednisone and that makes my head reel.

Kim’s the lead singer of The Breeders, the alt-rock band from Boston known for quirky lyrics and tremendously abrasive sounds sandwiched between beautifully constructed melodies. “Cannonball” was the big American hit. From ’93's album Last Splash.

Deal, the ex-Pixie, says in an interview with Spinner magazine that she got a wicked case of poison ivy while gardening at her parent’s home and got a prescription of prednisone to treat it.

"I was working on the 'Fate to Fatal' song downstairs in the basement, and I was on Prednisone," says Deal. "And I was freaking out over this drug…"

"I was strung out on the Prednisone, man! It was crazy! That drug is nuts!" she says, half-jokingly. "Have you had it before? I kinda liked it. Whatever."

Doctors consider prednisone a wonder drug. The synthetic corticosteroid drug is particularly effective as an immunosuppressant, which is why doctors use it to treat serious inflammatory diseases, including sarcoidosis, and tumors.

Diseases and conditions treated with prednisone include autoimmune diseases like sarcoidosis, inflammatory diseases (including severe asthma, severe allergies, angioedema episodes, severe urushiol-induced contact dermatitis, systemic lupus erythematosus, ulcerative colitis, rheumatoid arthritis, Bell's palsy, Crohn's disease, pemphigus and sarcoidosis), uveitis, various kidney diseases including nephrotic syndrome, mononucleosis Epstein-Barr virus, and to prevent and treat rejection in organ transplantation.

Prednisone can also be used to treat migraine headaches and cluster headaches and for severe aphthous ulcer (cankersore) outbreaks. It can also be used to treat autoimmune pancreatitis.

It is also an anti-tumor drug. Prednisone used to treat acute lymphoblastic leukemia, Non-Hodgkin lymphomas, Hodgkin's lymphoma, multiple myeloma, and other tumors in combination with other anti-cancer drugs.

I take 50 mg of prednisone daily to treat pulmonary and cardiac sarcoidosis. I also take 10 mg of methotrexate each Tuesday. Both are relieving the inflammation in my lungs and heart caused by the disease.

Prednisone is doing the job, but…

Since I have been on this drug, I have had mood swings – I’ve even started crying at the end of movies! I last time I did that I was a kid and I cried at the end of The Yearling and Old Yeller. I was, like, 7! (I'm not that old! I saw both movies in '71).

Some days I feel manic; frenzied energy grips me and I can do anything. Some days I feel so depressed I don’t want to get out of bed.

Prednisone makes my blood pressure spike and I have to take the maximum amounts allowed of carvededilol, lisinopril and hydralazine to control it. I take folic acid to guard against possible cell damage that could be caused by prednisone and methotrexate.

Prednisone causes insomnia, which I try to take advantage of by writing or doing on-line research. I have been prescribed Zolpidem (Ambien) to counter that side effect.

I am so tired of pharmaceuticals.

Patients are advised against alcohol intake while on prednisone. It’s rough on the liver and the combination could cause problems, including cirrhosis.

Prednisone causes joint pain; weight gain and facial swelling (moon face!); increased blood sugar for diabetics; pronounced fatigue or weakness; mental confusion and indecisiveness; blurred vision; abdominal pain; peptic ulcer; infections; painful hips or shoulders; steroid-induced osteoporosis; long-term migraines; severe joint pain; cataracts; anxiety; black stool; stomach pain or bloating; severe swelling; mouth sores or dry mouth; and avascular necrosis.

There are other side effects, too. The preceding are the big ones. Doctors prescribe the drug because it works so well and then prescribe medicines to manage the side effects.

Deal’s an artist. She might like mania and depression. I can appreciate them, too, because they can be an artist’s greatest partner. I am a journalist by trade, but I am also a budding fiction writer and prednisone might be fueling one of the greatest creative spells I’ve ever had. My sample readers say the passages I am spinning are riveting.

However, I would be happy to trade getting off prednisone for a case of good-old-fashioned writer’s block.

At least writer’s block doesn’t make you lethargic, achy or prone to wanting to smash things like The Incredible Hulk, or to cry at the end of 50 First Dates. It’s an Adam Sander film for heaven’s sake!

Kim, good luck with the tour. Enjoy the prednisone side effects. I want off!

Inspiration from a memory about a cemetery

2009-07-13T10:00:00.009-04:00

When I was a child, my dad took the family to Virginia to meet his peeps and to see the land from where his family hails. My brother Todd and I were probably 11 and 13 at the time.

Dad took us to a slave cemetery outside of Bracey, Virginia, where his aunt and uncle owned a farm. I knew little about American slavery back then but I knew it was exploitation and that the conditions under which slaves labored were brutal.

So I was surprised to see tombstones with ages 75 and older.

My father told me that the slave community considered a fellow slave “blessed” when they hit age 75 and deserving of honors, including a proper burial with head stone.

Slaves did not retire. They worked until they died. Some had chronic diseases, including diseases like sarcoidosis... Some of those slaves lived until their 90s, according to their head stones.

Today, Americans on average live 77.6 years, according to figures from National Center for Health Statistics at the Centers for Disease Control and Prevention. The life expectancy of American white males is 76 years compared to 70 years for African-American males.

The life expectancy of American white women is 81 years compared to 76.9 years for American black women.

Humans have lived rich full lives in the face of chronic disease since the dawn of time. I simply intend to be one of them. It is hard work, but working to live is better than doing nothing and waiting to go.

Recovery-wise, my docs and I talk about six months to a year. There is a chance that I might have to continue a maintenance dosage of prednisone, around 10 mgs daily, but I am focused on tapering off to nothing and seeing what it is like.

I was first diagnosed with sarcoidosis in 2005. It was discovered after an x-ray for different problem. There was evidence of sarc in my lungs, but it was dormant back then. Now it rages in my lungs and might affect my heart, too. The treatments, however, are working. I am feeling good, although there are some interesting side effects.

I am hoping to control it again through healthy diet, exercise and supplements. My mom found a homeopathic pharmacist I am going to work with, too. I'm going to look at everything under the sun to lick this thing.

I have read stories about people living with and managing sarcoidosis and other chronic diseases for 25, 30 years, flare-up free. I imagine myself being one of those people. I am trying to live a lifestyle that will help me achieve that goal.

Disease has been around forever and people have lived rich, full lives while dealing with it.

(Note: Thanks, mom, for pointing out the missing pronoun. Even editors need editors...;)

Moon face blues

2009-07-08T10:00:00.004-04:00

I have moon face.

I hate it. Specifically, I hate the way I look.

I am taking prednisone to suppress the symptoms of sarcoidosis, a rare autoimmune disease that attacks vital organs. In my case, my heart and lungs.

There is no cure, but it can be controlled by corticosteroids, including prednisone, and chemotherapy drugs, including methotrexate.

I am lucky. I am not suffering through many side effects. Not yet, thank God.

The longer one is on high doses of prednisone and methotrexate, the more at risk one is of severe side effects. We'll see. The goal remains to get off these drugs as soon as possible.

Over the past couple of weeks, I have noticed the moon face side effect. I have a full face anyway, but now it looks like a brown full moon.

So prednisone's side effects include high blood pressure, moodiness, joint soreness, sleeplessness, weight gain….and, moon face…Other stuff, too. Glaucoma...

Too @#$%ing much.

I know that the problem disappears after prednisone treatment is ended, so there is light at the end of the tunnel. But sarc makes one feel like shit anyway. Moon face is just piling on.

I should be grateful that things aren’t worse, but I wish I was going through this during the winter when we were all covered up by hats, sweaters and coats.

The only thing I can do is talk with my docs, keep with the program – I am not quite done with prednisone, although the docs have reduced it from 60 mgs a day to 50.

I plan to see my pulmonologist next week. Perhaps he will see enough progress to reduce the drug to 40 mgs.

I am trying hard to eliminate moon face. People who have had the problem and doctors recommend the following to reduce weight gain while on prednisone:

- Avoid salt

- Avoid alcohol

- Avoid sugar

- Drink plenty of water

- Exercise

The challenge is that the moon face side effect dovetails nicely with the mood-altering side effect. I see my reflection in a mirror and just want to crawl back back into bed.

But I know that I am engaged in a marathon, not a sprint. I have to go through some rough patches to get to the good plains, so...

…I’ll get through it…I’ll get through it…

How do you handle these drug side effects?

Lord, please help me get 10 pull ups

2009-07-06T10:00:00.007-04:00

For some reason, I find myself thinking about my college days (daze). It's a mid-life thing….OK mid-life crisis thing. Hate to admit it, but true.

I guess some things can’t be avoided. At a certain point in life, you realize that life is probably half over. Time to re-prioritize goals. Pull ups are on the immediate horizon.

Back in the day, in my late teens and through my 20s, I was fit. Not rippling muscle fit, but much firmer and very strong. But we age. At some point, it just becomes especially challenging to keep fit, especially if in these times when most of us have desk jobs, an unlimited number of processed foods enticing us and all sorts of diversions to take our minds off of working out in any form.

Right now, I walk, anywhere between 1-1/2 to three miles a day, depending on how I feel. I just need to do more. I have no illusions about being a pure athlete. The NFL has no use for 40-something tight ends. However, in my quest to conquer sarcoidosis, I am committed to getting in getting to the point where I can do at least 10 pull ups – hopefully by July 27. My birthday. I'll be 44 (Gotta figure out how to illustrate this story line. Guess I’ll shoot a little video as proof of success or failure).

Last week, a dear friend of mine from my middle school and high school days found me through facebook.com and said hello. She has a vibrant freelance photography business, a loving partner, beautiful cats. Charlotte, everything you told me, it all sounds great and I am so happy for you.

Charlotte was the one that made me reminisce about times when I did not get winded or tired (I meant to ask her if she remembered our marathon bicycle rides from back in the day). It was in the dorms on at the Temple University Ambler, Penn., campus that I actually wowed folks with the number of pull ups I could do. I felt like I could do them forever.

I was not a jock. Always an artist; specifically a writer and cartoonist. But I to defray expenses, I was always on the prowl for jobs and they were manual labor gigs delivering paper routes - UPS truck packer (sorry about those packages, folks); carpet cleaner; mover, stuff like that.

I was always fit and lean. I'm six-feet, three-inches tall (I thought it was 6-2, but Northwestern nurses find the extra inch. I'm claiming it but I thought we shrank as we got older).

The battle with pulmonary and cardiac sarcoidosis has definitely made my weaker. I acknowledge that I am better now after treatment, but the road to recovery is long. And I need benchmarks, so I have the intermediate goal of pull-ups.

Back in the day, the pull-ups routine – besides keeping me in shape – was a straight-up “chick magnet,” my way of demonstrating strength and virility. I know that.

Now, pulling off 10 solid pull-ups is a marker of success along a long road to wellness. And the goal of building muscle and losing fat. I'll eventually add push ups and squats, just using my own weight. But today, we do 1-1/2 miles, some pull ups (which actually might mean me just hanging from the pole until my system recovers from the shock of my desire to actually do something).

Bottom line is this: I need a physical challenge. The drugs that are suppressing my sarcoid symptoms, prednisone and methotrexate suppress the immune system. A sweaty gym might not be the best move right now.

But I have a deck that is a perfect personal obstacle course. I am turning it into a jungle gym for a 43-year-old kid. I'm also eyeing a little outdoor playground on Ashland. Seems like a fun place to play.

Try not to laugh too hard if you see me there just hanging from the pull up station.

I am doing well with weight. Folks on large doses of prednisone gain weight I did, but began working immediately to fix it. My size-42 jeans are starting to sag in the ass. Awesome.

I have a crazy goal of getting back into size 34 or 36 – crazy, I know. But the pants, they are beginning to sag. So I am going for it.

Weight loss has many benefits. Obesity fuels so many diseases that slow down people. Even limited weight training helps, too; stronger bones and muscles, revved up metabolism; improved self image.

I'll never be 180 pounds again, but I can get to a better weight for my frame and heart. So, I am going for it.

The late, great NFL defensive end Reggie White - one of my favorite athletes - died of complications of sleep apnea and sacroidosis in 2004 at the age of 43. I was diagnosed with sarcoidosis in 2005, but it was dormant back then. It became active and raged for a year before being properly diagnosed in March.

I am cool with it and up to the challenge of getting well.

Lord, please help me get just 10 pull-ups.

What exercises do you do to get/stay in shape?

After Jackson's death, spotlight remains on sudden cardiac arrest

2009-07-03T02:59:00.011-04:00

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The deaths of Michael Jackson and ad pitchman Billy Mays pushed heart disease to center stage these past two weeks.

Some 300,000 Americans die each year of sudden cardiac arrest, according to figures from the American Heart Association. The survival rate is low. Folks do survive, though, especially if they receive medical help within the first 10 minutes of an attack.

With that in mind, I interviewed Dr. Ajoy Kapoor is a cardiologist and sarcoidosis specialist based in New Haven, Hamden and Branford, Conn.

He explains sudden cardiac arrest; what people can do to prevent and treat it.

I want to be transparent: Dr. Kapoor was among the doctors who tested me in 2005, when I was first diagnosed with sarcoidosis. It was inactive back then, slight evidence of scarring of lung tissue. I have always been good about going to the doctor for regular check-ups, but I asked for exams checking specifically for signs of flare-ups. That may have helped me avoid the situation in which I find myself.

Here's what Dr. Kapoor had to say:

Q: What is sudden cardiac arrest?

A: Basically, it is the abrupt lose of heart function. In generic terms, in laymen’s terms, the abruptness of the loss of function is key.

Q: How is sudden cardiac arrest different from a heart attack?

A: Heart attacks are a broad category. Not all heart attacks result in sudden cardiac arrest. Not all heart attacks or myocardial infarctions cause sudden cardiac arrest.

Q: What causes sudden cardiac arrest?

A: Lose of blood flow. Blockage of an artery. An arrhythmia, an irregular heartbeat or the actual heart muscle of valve might physically be disrupted. You can disrupt it in a way to create a whole in the heart or valve. Seventy percent of cases have atherosclerosis, coronary heart disease (at its roots); another 30 percent is caused by a variety of arrhythmias (cardiomapolies; dilated heart; congenital heart abnormalities; valvular abnormalities).

Q: Who is at risk for sudden cardiac arrest?

A: If they are young, it could be due to congenital abnormalities, cardiomypothy; heart attack.

Other contributing facts are

- Smoking

- High blood pressure

- High cholesterol

- Diabetes

- Smoking

- Lack of exercise

Then there are many things we still don’t know. One can have good cholesterol, be a non-smoker and still die of sudden cardiac arrest. So, we also follow markers of inflammation. But none of these gives us a complete picture.

Q: What tests can I take to find out if I am at risk for sudden cardiac arrest?

A: Give your doctor your history physical; submit to an EKG (electrocardiogram); blood work. Then decisions can me made on that information and those results. Some people may need extra testing and some people may not need extra testing.

Q: Are there definitive treatments for sudden cardiac arrest?

I stress prevention. It is important to modify life style. Smoking cessation, exercising, lowering cholesterol, (controlling) diabetes. People need to take care of themselves. Prevention is key.

Folks do survive sudden cardiac arrest. Their stories at the Sudden Cardiac Arrest Association Website are uplifting. Check them out and have a great, safe Independence Day weekend.

Celebrity deaths grim reminders of heart disease

2009-07-01T20:29:00.007-04:00

Michael Jackson via last.fm

For Michael Jackson and Billy Mays, the Grim Reaper apparently showed up in the form of heart disease.

Sarcoidosis has affected my own heart, so the deaths of these two celebrities made me sit up and take notice.

It was initially reported that sudden cardiac arrest killed The King of Pop. However, the cause of death was “deferred” by the L.A. County coroner’s office until more test results are available. That could be weeks from now.

Autopsy results last week indicate that Mays, pitchman extraordinaire for Oxyclean and other product lines, died of a pulmonary embolism.

Same difference says the spokesman of the Sudden Cardiac Arrest Association.

During the autopsy, Mays showed signs of hypertension and arteriosclerosis disease of the heart, both known risk factors for sudden cardiac arrest, says Dr. Vince Mosesso, the SCCA medical director, in a press release.

Mosesso says SCA is responsible for more than 300,000 deaths annually in the United States.

“…In many cases the first sign of heart disease is sudden cardiac arrest,” Mosesso says. “(The deaths are) a reminder that we should all make every effort to know about, avoid or modify the possible risk factors for heart disease. Those with diagnosed heart disease should be vigilant in their medical care and lifestyle habits to reduce the risk of cardiac arrest.”

Risk factors include:

- high blood pressure

- atherosclerosis (coronary artery disease)

- previous heart attack, heart failure

- diabetes

- smoking

- obesity

Sudden cardiac arrest is a silent killer, so know the symptoms and what questions you should ask your doctor so he/her can help determine your risk. With sudden cardiac arrest, the heart suddenly and unexpectedly stops beating. Blood stops flowing to the brain and other vital organs, according to National Heart, Lung and Blood Institute Website.

Pulmonary embolism (PE) is a condition in which the pulmonary artery or one of its branches is blocked, according to the National Heart and Lung Association Website. It usually occurs when a blood clot from a vein becomes dislodged and embolizes to the arterial blood supply of one of the lungs, according to www.nhlbi.nih.gov/.

According to reports including comments from Dr. Vendand Adams, the-Tampa-based Hillsborough County Examiner, Mays “had an enlarged heart, a thickening of the wall of the ventricle which takes blood to the heart." The results of other autopsy reports are pending.

Jackson’s situation is still shrouded in secrecy. However, millions heard the 911 call from Jackson’s house and read or heard that Jackson’s cardiologist, Dr. Conrad Murray and then paramedics tried unsuccessfully to revive him.

There was also a report that the doctor prescribed or administered Demerol and Oxycontin to Jackson. Through attorneys, Murray has denied the assertion.

SCA usually causes death if it's not treated within minutes. Heart attacks are different from SCA. The heart can continue beating during an attack. SCA prevents that, shutting down the supply of oxygen-rich blood to vital organs. News accounts say that paramedics sent up to 3/4s of an hour trying to revive Jackson.

I’m paying close attention to results from the Jackson autopsy because my heart has been compromised by sarcoidosis, according to my physicians. They say that there is evidence of myocarditis, inflammation of the myocardium or muscular part of the heart, and cardiac sarcoidosis. It was probably caused by an infection and it can lead to heart failure or sudden death if continues to deteriorate. We are closely monitoring progress.

As I wrote in an earlier blog post, I have a team of docs, electro-cardiologists, who want to place a playing-cards-deck-sized defibrillator in my chest, just in case. But I am on prednisone and methotrexate, both of which suppress the immune system. The surgery to install a defibrillator is minor, but there’s still a risk of infection, so no operation. Not yet.

My goal (after consultations with several specialists) is to see if the heart stabilizes or gets better over the next few months. I have never felt a palpation or other problems, but I must admit that this heart thing is an albatross around the neck. I don’t think I am timid because of the problem, but I am damn sure always aware on a certain level.

I walked 1-1/2 miles Tuesday and thought about it as I began to break a sweat and breathe heavily.

Myocarditis can be treated with antibiotics; anti-inflammatory medicines to reduce swelling; diuretics to remove excess water from the body; low-salt diet and reduced activity. The condition is known to improve, doctors say, but is also known to get worse. To me, that is when the defibrillator would come in handy. But not at the moment. I like my odds of overcoming this.

We’ll try hard and we’ll see where we are at the end of July.

I expect to see a change for a better the next time we look at chest pics. I am getting stronger, I feel it. I do not think I am hoping against hope.

Meanwhile, God bless, Michael, Billy.

Mosesso is urging patients to follow some basic healthy heart guidelines:

- Share with your physician any family history of heart disease or sudden death and symptoms you have, including chest discomfort, shortness of breath, palpitations, indigestion and abnormal sweating, especially if associated with exertion or exercise

- Carefully follow physician recommendations on prescribed drug therapies for blood pressure, heart disease, diabetes and high cholesterol

- Exercise regularly. Even a regular walking routine of 30 minutes per day can significantly improve heart health

- Don’t smoke

- Maintain a healthy diet low in saturated fat, high in fiber and heavy on fresh fruits, vegetables and low fat, high-protein seafood and meats

Mosesso also urges people to learn how to do cardio pulmonary resuscitation and automated external defibrillator.

For more information, please visit www.suddencardiacarrest.org or view SCAA’s educational video on sudden cardiac arrest at http://www.youtube.com/watch?v=vXFEIoNkfQo.

Meanwhile, God bless you, Michael, Billy.

(Friday: More on sudden cardiac arrest)

Re-learning to breathe

2009-06-25T12:02:00.012-04:00

It has been a little over three months since doctors diagnosed my sarcoidosis flare up. I should not be impatient with progress. My docs say it will take six months to a year to get symptoms under control.

Last night was especially frustrating in terms of breathing. Today, too.

The humidity. Need I say more? Most of us hate humidity, but I remember the days – not that long ago – when I could work out outside during the summer months... developing a good lather.

When I was younger, I cleaned carpets during summers, using a high-compression system that delivered steam. A huge tank of water and cleaning solution was mounted in the back of a van and we'd drive from house to business to home blasting away dirt. And that truck, the engine of which was rigged to keep the water hot, had no AC.

One summer during my college days, I was a day laborer on a construction site. I worked under the high, hot sun needing nothing but water and pieces of fruit to get through the grueling work. Ditch digging. One of the best jobs ever, to be honest. Just dig what they need and no fuss.

Back then it was, Volleyball, anyone? Football? Let’s go. Full-court basketball? Let’s go. For hours and hours.

Today, walking and from the market can be a chore. This surprises me because I was breathing pretty well over the weekend and it was humid then.

My sarcoidosis flare up started last summer, with a sometimes uncontrollable cough, breathlessness, a little bit of bloody sputum (that should not have scared me, right?), fatigue. I wonder how long problems were percolating before they forced me into the hospital in March.

I felt like I was dying in March. I do not feel that way now. However, my breathing is still far from baseline. To keep the lung capacity I have and to improve it, I am employing proper breathing techniques – deep, measured breaths, inhaling and exhaling with the diaphragm.

Essentially, I am trying to reacquaint myself with breathing techniques I employed when I studied martial arts, or the techniques a good coach teaches to basketball players, swimmers, tennis players, etc.

It seems to be working. I have a pulmonology function test soon so I will see what the tests reveal. I'm excited about being weighed again. I feel that I am finally under 300 pounds - prednisone be damned! That would be a nice discovery.

Only 50 or so pounds to go...

For more about improving breathing affected by chronic disease, specifically sarcoidosis, click here.

Does anyone have techniques or tips they want to share? Meanwhile, I'm going to take a walk and practice my techniques.

Welcome, reader!

2009-06-23T18:06:00.004-04:00

I wasn’t planning to write today but I noticed that I have a follower. An actual blog follower!

Can’t keep an audience – even an audience of one – waiting.

So welcome.

Truth be told, I never thought I would write a blog. It has been a challenge. First, I am used to reporting, writing or editing stories written from the third-person perspective. For 20 years, I have been a cool-headed, detached observer with no dogs in the fight.

Now, I’m trying to get across my POV. It's a daunting task. I’m not the sort of person who would stand with a megaphone at the edge of a cliff and yell about my disease. That’s what I feel like doing.

Having an audience – even an audience of one – scares me. I want to make sure my readers get something valuable from this. So, in the coming weeks, I’ll be doing some original reporting on sarcoidosis. They’ll be posted here and will be sharable.

I’m also mulling the potential expiration date of this blog. My goal right now is simple: Blog through this transition from sickness to wellness – that guarantees six months to a year’s worth of blogging.

After that, is the blog useful? Does it expire or evolve into something else? The answer to that will be revealed sometime in the future. And readers will have a hand in that, I am sure.

So, there it is, my friend. And welcome.

Now, how do I get more folks to read this blog…?