Monday, August 31, 2009

Good-bye, for now, to favorite food

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.

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Friday, August 28, 2009

Stoic realizes he needs people, says 'thank you'

(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 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 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.
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Wednesday, August 26, 2009

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

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.
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Monday, August 24, 2009

Addictions come to life after death

(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.
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Friday, August 21, 2009

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

(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.

Wednesday, August 19, 2009

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

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.
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Monday, August 17, 2009

People, public places are hazards for 'germaphobes'

(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.”

Logo used for Global Handwashing Day around th...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!

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Friday, August 14, 2009

Cutting oneself some slack

(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) 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.
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Wednesday, August 12, 2009

Injecting civility into the health care reform debate

(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.

Monday, August 10, 2009

'Suffering' to wellness

(''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.
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Friday, August 7, 2009

Prednsione rewards and rage

(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.
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Wednesday, August 5, 2009

Quest for the right 'lid'

(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, 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.
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Monday, August 3, 2009

Consider rest if you are in a position to do so

(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...

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