Friday, July 31, 2009
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.
Wednesday, July 29, 2009
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.
Monday, July 27, 2009
(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.
Friday, July 24, 2009
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.
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.”
Wednesday, July 22, 2009
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.
Monday, July 20, 2009
(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.
Friday, July 17, 2009
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!)
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.
Wednesday, July 15, 2009
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!
Monday, July 13, 2009
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...;)
Wednesday, July 8, 2009
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
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...
How do you handle these drug side effects?
Monday, July 6, 2009
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?
Friday, July 3, 2009
Image via Wikipedia
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.
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
- High blood pressure
- High cholesterol
- 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.
Wednesday, July 1, 2009
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
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.
“…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
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.
There was also a report that the doctor prescribed or administered Demerol and Oxycontin to
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
I’m paying close attention to results from the
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)