Wednesday, September 30, 2009
(Above: A radiogram showing advanced pulmonary sarcoidosis)
I am seven months into dealing with sarcoidosis of the heart and lungs and I am still getting used to the new normal. Some people who are diagnosed with chronic disease go through a period of mourning the passing of that which they thought they were before they were stricken.
However, I do not mourn the old me because I am still alive. I'm just tryng to get with the new normal.
Sarcoidosis has changed how I live. I have to think about it or react to it all the time. The autoimmune disease is scarring my lungs and heart and who knows what organ or system is next on its list. Sometimes I feel like I am paying attention to every breath and heart beat.
Most days I am upbeat. I am going to beat this thing. Some days I am low and scared. However, I try not to allow negative thoughts dominating my mind.
"It's tough. It's a real challenge dealing with a chronic disease," my internist said to me today after I visited him after being ravaged by what I think was a bad reaction to a flu shot. He things I caught a cold and had a rough time with it because I am taking prednisone, which controls sarcoidosis but suppresses the immune system leaving one especially vulnerable to infection.
However, right now we're focused on chronic conditions and the new normal, so...
I told my doctor that I am frustrated because I am no longer normal. He pointed out something that has been bouncing around in my head since childhood: Normal is relative and fleeting.
It would be great if my heart and lungs functioned at what is widely considered a healthy standard, but they do not. I have to find ways to maximize what I have.
The challenge, my internist said, "is getting used to the new normal. There are always going to be challenges and obstacles," but life goes on.
I wish I did not have sarcoidosis, but I must admit that some good has come from the situation. I have learned:
- Patience. 'Now' has always been when I wanted stuff done. Comes from growing up in the wake of the Me Generation, being a daily journalist and a card-carrying member of our instant gratification culture. However, some things, like healing don't happen according to our planned schedules. Healing takes its own time. I have written about that before, but it is hard to accept. Still, I get it. I am getting it very slowly, but I am getting it.
- Humility. I can do this alone with no help from others. That preceding statement is bunk, but I tried to believe it for almost 20 years. Simply put, some things out there are bigger than we are. There are times when we need to help people and times when we need to reach out for help. I was good at helping but not good at asking for or accepting help. That is both selfish and foolish.
- Discipline. One thing I love about daily journalism is immediate deadlines. News stories are worthless if they are not timely. Managing a chronic condition has made me more mindful of being disciplined in my personal life - taking medications on time, monitoring body systems, exercising on a regular schedule. It is a matter of goal setting and prioritizing.
- Strength. I had to go into the reserves to survive the winter of 2008-2009. My sarc symptoms, in fact, were a load to bear from the summer of 2008 through March of 2009, when I finally said "No Mas" like Roberto Duran after his second fight against Sugar Ray Leonard. I sought help because I had to. No other choice. And I am glad I did.
Again, I wish I did not have sarcoidosis but I do see a bit of light in the dark tunnel.
In the new normal, I plan to find a way to make that light shine.
Monday, September 28, 2009
On a positive note, Sunday I fit into a pair of shorts that that were too tight to wear just two months ago. The triple h's - hazy, hot and humid - were in effect Sunday so I wore them out. I would have worn them if it had snowed. Celebrating weight lose trumps seasonal fashion. And now, the column...)
First off, if you smoke or are considering smoking after being exposed to all the evidence about the dangers of tobacco and nicotine, you are a fool. A drug-addicted fool, but a fool no less.
I am a reformed fool. I smoked for more than 20 years and quit only after sarcoidosis look hold of my lungs and heart. The desire to smoke was strong. I started smoking again shortly after a 10-day hospital stay for shortness of breath, chest pains and other symptoms of the autoimmune disease. Now, it has been almost three months since my last cigarette.
I could feel my body telling me that it was time – past time – to stop, and with the help of a little, blue pill…No, the other little, blue pill. Get your mind out of the gutter…I was able to stop. I liked smoking and I am sure that the nicotine implored me to continuing puffing away even though evidence was mounting that something was wrong. I will continue to fight the urge to smoke and take solace in the fact that my lungs are improving. However, they are nowhere near as good as they were before sarc. I just know it would be foolish to slip back into that nasty old habit, so I won't.
While I agree cigarettes are terrible, I am against the new law banning the importation of flavored cigarettes. We already have laws on the books that, when properly enforced, keep cigarettes out of the hands of kids.
(My buddy's favorite smokes) I am writing in support of a friend of mine who loves imported clove cigarettes. I would smoke them with him on breaks at the New Haven Register. I preferred Marlboros or Camels. These cloves were too rough. When I inhaled one, it felt like a hole was being burned through my throat. They were tasty, though, like an exotic fruit. An exotic fruit that can burn a hole through your throat.
(Children are better off if we feed them the toys that come with the kids' ''meals") If we want to pass laws protecting kids, let's ban kids' meals from fast food restaurants, commercial aimed at getting kids to crave fatty, salty, sugary foods and drinks, and cap the number of hours kids can watch TV or play video games.
The news media got excited about kids setting records for playing the video game Guitar Heroes. Video games are fun, but kids are wasting time on games when they could be outside getting exercise or doing something that might spark imagination and innovation, like spending hours actually learning how to play a real musical instrument. Something. Anything but being a lump on sofa pretending to be a guitar hero.
I just imagine a generation inspired to do their best to mimic the work of the world's best musicians instead of aspiring to create original great music themselves. And I imagine the contestants preparing for battle by crackling their knuckles, sitting on their flat, ever-widening asses and pouring and shoving massive amounts of soda, French fries and who-knows-what-else down their throats.
Consider banning fruit-flavor spirits and malt liquor. Very few wine coolers have actual wine in them, honey. It's a good bet the key ingredient is malt liquor, the swill that down-and-out men used to hide in paper bags and chug while leaning in street lamps to steady themselves. The manufacturers wanted to move more of it so they camouflaged the taste and drab brown look in sweeteners and food coloring, prettied up the packaging so it would be cool for young people, especially young women, and ta-da! Drink up, just careful not to crash your car and mindful of whom you might wake up with after a fruity-tasting bender.
Perhaps it was all those years of exercising and playing in the sunshine during the good old days before video games became popular.
Hey, pale fat kid, drop the remote, get outside and play!
Friday, September 25, 2009
When I take my medications, I imagine that the little pills migrate down my esophagus to my stomach, split into two groups and rumble like the Jets and Sharks in West Side Story.
These little buggers stomp and kick and pound the body. At least that is what it feels like where I am sitting.
The pharmaceuticals I take to fight sarcoidosis have been getting to me of late. I was handling drug side effects well but then two things happened: The introduction of metformin at a high dose and a seasonal flu shot. The metformin is for type 2 diabetes, which was caused by high dosages of prednisone used to fight my case of lung and heart sarcoidosis. In all the docs and I are employing….well, many drugs. Let’s list them: prednisone; methotrexate; lisinopril, hydralazine and hydrochlorat (to reduce prednisone side effect of high blood pressure) folic acid (to stem the cell-destroying side effect of methotrexate); metformin; Advair disk and Combivent inhalers (to mitigate pulmonary sarcoidosis and symptoms of COPD); Zolpidem (Ambien) to counteract prednisone–induced insomnia; alendronate and calcium and vitamin D supplements (because prednisone can destroy bones).
Prednisone is a steriod that suppresses the sacroidosis symptoms but also alters mood, makes your joints hurt, ratchets up blood pressure. Methotrexate suppresses sarc problems, too, but, it makes you feel worn out and can destroy good cells, too, which is why folic acid is prescribed to the mix. The blood pressure meds make you drowsy. The inhalers make you sneeze. The Zolpidem knocks you out.
Metformin side effects, stomach upset and worse, are now thrown into mix. Fun. Forty-million Americans take metformin and most suffer no problems. I guess I am one of the lucky ones.
There are tens of millions of people out there among us taking multiple drugs to battle some sort of disease. I watched a documentary that told its tale through the story of a young man in his 20s taking 30 pills a day plus injections to deal with a serious kidney problem. I am amazed people on multiple meds function the way they do.
Sometimes, I take these 'scripes and I develop what I describe as a do-not-know-whether-I-am-coming-or-going feeling. I feel weak and edgy and ragged and raw. So I just sit and let it pass. Watch some TV. Good documentaries on PBS in the mid-afternoon, you know. Learned a lot at the history of so-called narcotics farms in America. Fascinating stuff.
I wait until the feeling passes and then get on to what I was trying to do in the first place. I remain greatful because as bad as I have it, I know there are people who are worse off than I.
And better times are ahead. I visited my pulmonologist Wednesday and he said my lungs sounded clearer than the last time he listened to them, which was about six weeks ago. Blood pressure was 127 over 80, which is great for me. The goal is 125 over 75. My oxygen saturation test reading was 94/95 percent. He says a reading of 97 is great so I am not far off. If it hits 87, well, you have problems. Have to make sure it does not dip. Weight-wise, I am at 304. Not exactly where I wanted to be, but it is lighter than 312 and the weight loss comes after quitting smoking and while still taking prednisone. "You have no idea the good you've done by quitting smoking and dropping a little weight. It's hard; just try to keep it up," my internist said recently. I will.
The next big thing – I guess the only big thing – is my heart. The left ventricle, which pumps oxygen-rich blood, is weak. The question is how weak. The heart, a muscle, gets stronger with exercise and I have been working out. Did the prednisone reduce the inflammation and scarring that appears to be interfering with normal heart function?
I find out on Tuesday…finally. I am hopeful. The affects of the seasonal flu shot? It makes you feel...fluey. I'm feeling better, though. Can't wait to take the swine flu vaccine shot in October. Fun.
Ultimately it is a trade off: Do the drugs benefits outweigh the side effects and can the side effects be managed and/or tolerated? Will challenging times now give way to something better in the future? I say yes to both.
Wednesday, September 23, 2009
These past few days I have been getting used to metformin, prescribed to me because I developed type-2 diabetes, a side effect of prednisone. I am taking prednisone to fight lung and heart sarcoidosis.
Metformin makes me feel like crap. I am fatigued and nauseous and my muscles ache. It has also robbed me of energy and appetite, although the latter is not so bad because I am trying to lose weight. Still, the other side effects are not cool.
My pulmonologist is recommending I split the dosage – 2,000 mg - to see if that helps. I just want off this drug and all the others right now, but I have to keep reminding myself that the goal is not just to quit taking them right now. The goal is to get well, period, and that might take a while. Even longer than I imagined, so I need to steel myself for the journey.
Today I am getting myself out of the doldrums by listening to “Chair In The Doorway,” the new CD from Grammy-winning hard rockers Living Colour, one of my favorite bands. I bought it Friday. This column, as always, is about overcoming, not wallowing in self-pity. I get low like the next person, but I try to bounce back as soon as possible. Music helps me do that, so…
Chair In The Doorway is very good. On a scale of one to five stars – one being horrible and five being epic – I would give Chair in the Doorway a solid three-and-a-half to four stars. Corey Glover’s voice is still among the most soulful falsettos in pop music; Vernon Reid’s guitar solos still amaze me. However, what sets LC apart from the majority of hard rock bands is the ability to maintain rhythm…the "roll" in rock and roll...while also making the audience want to bang its collective head or jump into a mosh pit.
The drumming and bass playing of Will Calhoun and Doug Winbush keep the sonic experiments grounded and groovy, and Reid is at his most incredible when he, too, keeps a rhythm. Even my dad, a blues and jazz connoisseur, is amazed by Reid and has been a fan since the the late '80s, when I just shared the band with him.
"Chair In The Doorway" is LC’s return to form after the uneven "Collideoscope" in 2003, but I do not compare it to LC classics "Vivid" and "Time’s U"p (my favorite CD. Favorite song: "Information Overload." More sonic and artistic than everyone’s fav "Cult of Personality." To me, the IO guitar solo sounds like a man struggling to break the constricting bind of technology, clinging to him like hot plastic wrap and suckng away precious time, which is all one's got anyway...Well, that's what I take away from it).
Behind The Sun is the likely hit off this release, but several songs, including "Decadance," "Hard Times," and "Bless Those (Little Annie's Prayers,)" stand out.
I saw LC for the first time in 1988 in Philadelphia. I was so blown away that I took the subway to Tower Records on South Street, ran up to the clerk and said “I just saw Living Colour! Please give me anything you have by them and any band like them!” I walked out with copies of music by Bad Brains, 24-7 Spyz, Fishbone and a copy of Maggot Brain by Funkadelics. I knew of them and their music, but not about their rock experiments in the ‘70s. I was in heaven even though I am sure my neighbors were not. I like it loud.
I’ve seen Living Colour six or seven times. CDs are great, but the live shows, they flow differently. CDs capture a moment in time, but a live band, standing right before you, can decide whether to slow down or speed up a number. A band feeds off the energy of the audience. A good Living Colour show is like attending church. It will leave you rejuvenated and hopeful about the future. I plan to see Living Colour live again in New York City at the end of October. Can't wait.
My favorite Living Colour concert was at the in 1993 at the Roseland ballroom. I lived in Nyack N.Y., back then and was a reporter for the Rockland Journal-News. I went with one of my best friends, Daryl, but my guest of honor was a woman named Lisa. When I think about it, Lisa is certainly one of my best friends, too. She’s also a smart, beautiful woman. I have known her since I was a teenager. We met as camp counselors but attended separate high schools. We grew apart during our college years but caught up with each other in the early 1990s and started hanging out. We always clicked so I should not have been surprised that she knew about Living Colour, heard some of the music and wanted to see them in concert. Sweet.
I was going to see Living Color with Bad Brains on the under bill. I would be escorting my pretty and smart female friend - and I seem to recall she was wearing a flowing min-outfit, clunky high heels and a black leather jacket…she was quite a sight - and hanging with my best bud, too. Things don’t get better than this, I thought.
I gave Lisa a pair of earplugs as a before-concert gift, we picked up Daryl and drove to NYC. We ate at a Houlighan’s near Roseland and hustled over to the concert hall. We were careful to stand in the middle of the growing throng. I didn’t want us too close because I did not want Lisa to be trampled or swept up by the dancers headed to the mosh pit – I lost one to the pit once. Another story for another time.
(The original, legendary Bad Brains line up) Bad Brains is taking stage. The lights go low. The crowd starts cheering as guitarist Dr. Know and bassist Darryl Jenifer swagger onstage their axes in hand (genius-nutso lead singer Paul D. Hudson, more commonly known as H. R. - Human Rights, and his drummer brother Earl Hudson had split with the band at the time over creative differences. Vocalist Israel Joseph I replaces H.R.; Cro-Mags drummer Mackie Jayson replace Earl). My boy Daryl’s eyes are big, soaking in the scene. I turn to Lisa, who was on the left. She is a beautiful woman, I think. And very cool. How many women are cool enough to hang tough at a Living Colour-Bad Brains concert?
Lisa smiles at me as I hear Dr Know welcoming the crowd to the Roseland, he hits chords on his guitar. I look into Lisa’s eyes. They are…rolling up into the back of her head. She is out!
Watch the concert…save the girl…Save the girl!
Darryl and I grab her and get her to the couches lining the concert hall. We trample over people to get her there. Sorry.
It happens very quickly. Lisa was recovering by the time we got her seated. It was the heat. Too hot and not enough liquids. Daryl disappears to the bar and comes back with cups of water and ice. Lisa and I thank him. She says he is OK. He disappears toward the mosh pit. Stomping through those folks while helping Lisa did his soul some good.
Lisa tells me she is OK and I believe her. She is beautiful, I think, and tough. I wade back into the crowd in time to see Bad Brains perform “Sacred Love.” I keep a close eye on my friend, too. Daryl floated by every so often, bobbing his head.
It was the best concert I ever attended.
Friday, September 18, 2009
Journalists tend not to look at the bright side of life. As a reporter, editor or journalism instructor, I will tell you that stories are stories.
However, I am not interested in crafting or editing lightweight features about a day at the county fair or a little kid who grew a gigantic pumpkin. Give me a homicide story to cover or coordinate. Let me or my team of reporters dig into political or governmental corruption.
Anything with conflict and drama. Something that people will move people to act. Something that will make an audience sits on the edge of its seats.
So, with that mindset, it is tough to get excited about the good news amidst the bad.
My internist called me in Wednesday to explain the results of blood work he ordered. I have sarcoidosis. It affects my lungs and heart and I am taking prednisone and methotrexate to control a wicked flare up of sarc symptoms that landed me in the hospital in March.
Good news: My blood pressure was lower than ever 117 over 70. The goal was 125 over 75. That is cool. My cholesterol level is good enough that it “is considered a negative risk factor for CHD (coronary heart disease)," according to the lab report. OK. My lungs sound clearer than they did the last time I visited my doc six weeks ago. Fine; got that going for me. What else?
Bad news: I have developed type II diabetes. Blame it on the prednisone. The drug saved my life in March by halting the development of scarring that was compromising my lungs and heart. It also has many side effects and there is no way to predict which ones will develop until you start taking the drug. Prednisone side effects I am dealing with include mood changes; insomnia; headaches; weight gain; constant hunger; fluid retention, high blood pressure, soreness, thin skin…and, now, diabetes.
On the bright side, I don't have other nasty prednisone side effects, including glaucoma and other irreversible conditions. And the good test results are indicators that clean living and the medications, for the most part, are paying off. I have to stay on top of things and obviously, in the wake of the diabetes thing, have to make more life style changes.
But, hey, I have already quit smoking, drinking, and drastically reduced caffeine – trying to quit that, too. I am eating right, exercising every day, getting eight hours of sleep, brushing thrice daily and flossing…
...Helping old ladies cross the street, and trying to generally be a good scout and…
Fuck, I am pissed off and frustrated. I will not throw in the towel or have a pity party of one or anything like that. But I have to express my shock and outrage at this shit. I just did not see it coming even though I have been psychologically preparing myself for a moment like this one. I know my war against sarcoidosis could be a long one. It could take up to two years to rein in symptoms and the changes I have made are permanent. I loved smoking but I cannot go back. I loved having a beer – or two, or three – must give that up, too (definitely while I am on methotrexate and my new pharmaceutical friend, metaforin.
A field general does not agree to lose battles in effort to win a war, but that is exactly what I did when I decided to stick with prednisone for as long as possible in this fight against sarcoidosis. My goal is to get off the corticosteroid and all the drugs I am taking to manage prednisone and methotrexate side effects as quickly as possible. I want off before something else crops up.
Sarcoidosis, prednisone, methotrexate and these other drugs make me feel like Robert DeNiro in Raging Bull. Its the story of middleweight boxer Jake LaMotta who, while wrestling with life’s demons, literally gets into the fight of his life against the great Sugar Ray Robinson.
LaMotta is a slugger, a hell of a fighter. Think Marvelous Marvin Hagler, a tough street brawler type, only Italian American. Robinson is widely regarded as the best boxer of all times. He was a smart, strong, precise and methodical fighter. He would break down an opponent piece by piece – much like good old sarc.
During a championship bout on Feb. 14, 1951, Robinson beat the snot out of LaMotta. This was the sixth time the great boxers met in the ring. The scene is graphically re-imagined by film director Martin Scorsese. (Left, portrait of greatest boxer ever - period) Robinson really kicks LaMatta's ass. Exhausted, bruised, battered, and leaning against the ropes, The Raging Bull implores the champ to go for the kill. To take him down. Robinson obliges, releasing a flurry of punches that make LaMotte’s face look like cube steak (Yes, a boxer's face can look like raw meat after a bout), The fight is ended; technical knockout in the sixth round.
But LaMotta is still standing. “You never got me down, Ray. Ya hear me? You never got me down,” LaMotta says to Robinson. Sarc, prednisone and the rest are dealing out some heavy blows, but they did not knock me down.
They will never knock me down.
Wednesday, September 16, 2009
Image via WikipediaI am not willing to let U.S. Rep. Joe Wilson, R-S.C., off the hook for shouting “You lie!” during the President’s speech on the health care reform bill.
I am ready to crush my Kanye West CDs after his social mugging of Taylor Swift’s moment at the MTV Music Awards.
However, I am ready to forgive Serena Williams’ expletive-charged tirade at the U.S. Open.
Why do I want to forgive Williams and not Wilson and West? Sincerity.
Williams, Wilson and West are just three of the millions of Americans who are part of the larger rude culture that grips the nation. Got to www.youtube.com and you will see many examples of rudeness and obnoxious behavior passed off as entertainment or edifying thought. Celebrities and elected officials have figured out how to take rude to a higher level.
I have been battling rudeness as if it were a disease. I battle it about as hard as I battle the sarcoidosis that affects my heart and lungs. I’ve written about my desire to live by the Golden rule and to be decent for the sake of being decent. Also, I think it would be good for my health, too.
However, some folks can’t help themselves. And we’re all far from perfect. Frankly, I could lose it any moment. I am a hot head. I just strive to control it, especially while taking prednisone, which helps with my autoimmune disease, but makes my temper shorter than usual. Yes, I seem easy going. Trust me. My fuse is slow but attached to a powder keg and it occasionally erupts. Or perhaps my temper is like molten rock, waiting to find relief through a fissure. Relief in the form of yelling at the top of my lungs. I just fight the urge. My parents reared me well. I am no pushover, but I want to be respectful to others. The surnames McClendon and Lambert (my dad’s surname) belong to other people and I do not want to do bad by them.
I am trying to live a slower-paced, evenly keeled life, but this comes after 20+ years of running at full speed. It is hard to idle and chill. Just ask the receptionist at the Long Branch, N.J., radiologist office I yelled at for not walking the images they took of my chest from their third floor office to my doctor on the fourth. What, do I have to come in from Lakewood and do it myself? It make no freaking sense I snorted, verbally bullying her to deliver the films to my doc.
I thought about my actions and I apologized to the woman's face the next day. It was not her fault she was following a policy set by her boss. My apology was sincere. I am not sure about the apology offered by Wilson to Barack Obama. He gave it up only after members of his own party dogged him to do so. He also continued to perpetuate a lie – that the president’s health care proposal includes provisions for care for undocumented workers (illegal aliens, a term I do not like). Read the 1,000 pages and find the language for us, please. It is not there. That makes Wilson insincere and a liar.
I own the West CDs entitled College Dropout and Late Registration. I admired the rapper for speaking out against the federal government’s mishandling of the relief effort in the wake of Hurricane Katrina.
But West seems to be working on a new CD entitled No Class, No Manners because that is what he exhibited on Sunday during the VMAs.
Can you imagine his reaction if someone had taken the mic from him while he was delivering a thank-you speech after getting an award? That was one of the most classless acts I have ever seen. And The MTV Music Awards is one classless act after another, so that is saying something.(Hey, Kanye, just between us: Swift video won because in it she portrays an every woman overcoming obstacles. I love Beyonce’s video, too, but it is because she and two other fine-assed women strut their stuff while dressed in nothing more than body suits and stillettos. Greatest video ever??? Greatest video with fine-asssed girls in body suits and stillettos, man, that's it).
West dissed Swift on a Sunday and apologized the next day on the new Jay Leno show. But hid behind the apron of his dead mother, blaming his transgression on working too hard and not taking time off to grieve the death of his mom.
OK, here’s a prednisone moment: Kanye, boo-!@#$ing-hoo, man. Life is lived on the fly. There is no time off. I feel the loss of your mom, but she is not an excuse for your jack-assery. Get it together. Even the president referred to you as a jackass. Dude, I don’t think it is often that a president drops that about people. Reporters would report it. It does not come up often.
A straight up " am sorry"would have served Kanye best. I think that is why I am willing to give Serena a break. Yes, history will remember her for saying she would shove a “@#@$%ing ball down the &*$%ing throat of a line judge in the U.S. Open. The day after the tirade, she appeared genuinely contrite.
Serena’s apology is in three parts; a direct apology to the person she berated, an acknowledgement that she was wrong and a stated desire to learn from it and move on.
You can’t ask more from her or anyone else. Did she offer it because she has a lot to lose if she doesn’t? Don’t all of us who do stupid, rude things have a lot to lose if we don’t apologize? At least her second go at it appeared heart felt.
Monday, September 14, 2009
My clothes are no longer tight.
I do not grunt and struggle to get out of a chair or off the floor.
I can touch my toes. I can see my toes...
I am lighter and more flexible than I was in March when I visited my folks in Lakewood, N.J. I’ve lived in Lakewood for about six weeks now. Size-wise, I still consider myself a dancing bear.
But I definitely feel smaller. The question that haunts me is this: How big was I? Where are the haters when they are needed? Haters would tell me that I was so big I needed a personal zip code.
I asked my mom; I see where I got my diplomacy skills. “Well, you’ve been working hard (to lose weight) since you’ve been here,” she said. “That is all that matters.”
All my dad would say, after my prompting, was “Trust me, you were big!” But he won’t go any further.
The last time I was weighed was in mid-August. I was 306 or 308. It depends on which scale you believe. Both were in doctors’ offices. Both were those old stand-up scales. I stepped on a couple of digital bathroom scales in August. They registered OL, over limit or over load. Sigh.
Apologies to whoever found their scale smashed into bits in the wake of my visit.
“Can a scale really jump from two stories to its death, David?”
“Well, I’ve been in the news game for a while and I’ve seen all kinds of strange…Oh, look at the time! ‘Gotta go! ‘Gotta go!”
The most I ever weighed in my life was 330 pounds, according to my health records. That is NFL lineman big. That was in 2005 and, in about four months, I dropped to 270 after a doctor expressed concern.
But I was not on prednisone back then. Prednisone and methotrexate appear to be keeping at bay my lung and heart sarcoidosis symptoms (I’ll know more later this month), but prednisone makes me ravenous. Between mid-March, when I started the prednisone regiment, and mid-May I went from 295 to 321 pounds. I ate everything under the sun and asked for seconds. Thirds. I was on 60 mgs of prednisone, a high dose. There were other fun side effects, too, including mood swings. Not good. I got my appetite under control and weighed in at 297 in mid-July. However, it was difficult to maintain the discipline needed to fight the drug-fueled urge to eat all the time. So, I got up to 306-308...OL on the electronic bathroom scales! Damn...
However, these past few weeks...I think I finally got it together. I walk two to four miles a day, work out with barbells, TRY not to eat after 9 p.m.
Also, my prednisone dosage has been cut in half. This might be the edge I need to get a handle on the diet. I am reading about how hard it is to lose while taking prednisone, but, experts and patients alike, also say it can be done.
I am trying hard because reducing and controlling my weight is key to curbing sleep apenea, heart disease, making it easier on my lungs. Too much is at stake.
I visited a new internist four weeks ago. He recommended I weight myself every day to gauge progress. I chucked that idea. Instead, I try on clothing. I do that once a week. Slowly but surely, stuff that once was tight now fits.
Starting today, I am going to cut off food after 7 p.m. We'll see how it goes.
I will be weighed again on Sept. 22. Whatever the new weight I will let you in on it. I will be visiting a new cardiologist and, after my new routine, I anticipate encouraging news.
Whatever happens, I’ll write about it, draw inspiration from the event and will keep fighting to get things right.
Friday, September 11, 2009
"Yes, bii-a-atch, I do get that a lot."
That's what I think to myself anyway.
"Why, yes, I do!" That is what I say with an odd and affected mix of weariness, excitement and sarcasm. "I get that all the time, thank you so very much!"
The 'Phil' the woman busing tables at the Wendy's on North Broad Street in Elizabeth, N.J. is referring to is the character Philip Banks in the sitcom The Fresh Prince of Bel-Air. He's played by James Avery (The pic of Avery is from a fan site displaying autographed photos of celebrities).
Uncle Phil! a woman shouted to me on the streets of New Haven back in 2005
Oh, shut the @!#$ up, I responded...rather un-Uncle Phil-like, I know.
Truth be told, it doesn't really get deep under my skin. James Avery seems like a nice enough guy. And Uncle Phil, in the world of the sitcom, is well respected, educated, smart (educated and smart don't necessarily go together; the character is both), successful, wealthy, married to a beautiful woman... It's all good for Uncle Phil.
My basic problem is this: The guy who plays Uncle Phil is 20 years my senior! We share surface characteristics. Both of us are tall, big and bald. Both of us have salt-and-pepper (heavy on the salt!) beards.
This ain't a case of 'they-all-look-alike' either. Black people AND white people have shouted "Uncle Phil!" as I've walked by. It does not happen often, but it happens enough. Like I said, I don't mind, but look closer. I don't look like James Avery, as handsome as he is...;)
(Pic: Angela Bassett in a red dress) Surface characteristics, surface traits...Natalie Portman, Megan Fox and Natalie Wood are slim brunette women. Do they look alike? Marilyn Monroe and Madonna are blondes. Do they look alike? Orprah Winfrey, Angela Bassett, Hallie Berry. Can people not tell the difference between the three? Sorry...I can't come up with any examples that include guys. But see where I am going.
The point is this: Look past the surface and you'll see individuals, not people who remind you of characters or celebrities.
(Pic: Marilyn Monroe glam shot) I do wish I was a celebrity, though. I would use my good name to raise awareness about sarcoidosis and other autoimmune diseases. I am impressed with folks like Karen Duffy, who have talked candidly about battling the disease. I know the folks at aspire.com are hoping that a celeb with the disease steps up to the mic and talks about it. Maybe they will appear on Oprah.
Hmm...come to think of it, maybe I should try to pass for James Avery...I'll call Oprah, tell her I have a new project, get on the show and then tell the world about this disease, raise money for a cure, yada-yada-yada...
Oh, well, a fellow can dream - and shave off his prematurely gray beard!
Today, we remember the men and women who perished in the 9/11 terrorist attacks.
We stand united in fighting terrorism and making the world a better place so it does not happen again.
We should also consider possible causes for sarcoidosis and other autoimmunue diseases, which affect millions of people. Consider this report on a study in the wake of environmental pollution after the collapse of the Twins Towers. Click here for more.
Wednesday, September 9, 2009
Her arm’s gotta be tired, I think as I turn from the sweet carnage and mayhem that is District 9 to check on…my 84-year-old grandmother.
“Are you OK?” she asks me wide eyed. “Yes,” I chuckle and turn back to the sweet carnage.
Hey, don’t dog me for taking Gram to see District 9. It was her idea! Hey, she took me to the premiere of Jaws. I was 10 years old. Remember that opening scene, when the girl gets eaten by the shark? I still can't swim in the ocean.
And Gram made my mom take her to see Inglorious Basterds. Gram said she could not make heads or tails of the Jewish revenge fantasy epic. My mom was left speechless by Queinten Tarantino's violent imagery.
“I didn’t really notice much,” Gram said when I asked about the movie. Um…they depicted the scalping of a man. Knife to scalp, cutting and peeling the head past the fat meat.
What does this have to do with sarcoidosis? Plenty. I have cleaned my grandmother’s apartment and taken her to a doctor’s appointment and the movies. I have taken her to dinner and lunch. She lives 50 miles away and I have driven some 700 miles to see her since I moved home six weeks ago.
Six weeks ago, I could not have done any of this stuff without breaks to catch my breath and a long nap. But I am exercising every day to help my heart and lungs. I will have tangible proof of my health status in two weeks when I go to see my new cardiologist. The specter of a defibrillator implant still hovers over my head. But I am expecting to see improvements. I feel better. My clothes fit better. I move better, stand taller. Prednisone and methotrexate be damned, but they are doing the job of keeping symptoms at bay. I still want off, though. Still too many side effects.
To get well and maintain wellness, I am eating right, breaking a sweat while walking trails in the Pine Barrens and (moderately) pumping iron, trying to keep stress at bay. I am also being kept buoyant by the unconditional love of my family.
As recently as six weeks ago, I could not go a whole day without a long nap. Now I can’t catch a nap with a rod and reel. And I am thankful.
My mother visits my Gram every week and takes her shopping, to dinner, movies. My Uncle John, same thing. I am glad I can help. I know I am supposed to be resting, but reconnecting to family is very important to me and anything I can contribute, I’m going to do it. When I was a kid in the late ‘60s early ‘70s, my Gram would take my brother Todd and I everywhere. She’d take us shopping along Broad Street (Yo! Anyone remember the old Fanny Farmer’s candy store on East Broad Street in Elizabeth, N.J?! Chocolate cigars!). We walked everywhere. Back then it was hard for my little legs to keep up with Gram. She is a short woman, but man could she step. The steps come much slower now and they are unsteady, so I let her lean on me.
She knows I am sick and tells me to pace myself. I remind her to do the same thing.
She helped raise me so I will be there for her until the end.
…I'm just saying…
Note to New England Patriots quarterback Tom Brady: After the Patriots traded all-pro defensive tackle Richard Seymour to the Oakland Raiders, you described pro football as “unconditional love.” Unconditional love is when you love someone so much that you stick with them through thick and thin. You don’t trade or discard them because you can get a younger , cheaper version of the person.
What the Patriots did to Seymour is happening to a lot of American workers. No Fun League players have a union and contracts, but most of their money is not guaranteed and they are treated as well as regular, old at-will employees. Ain't no love there. Just Ask Brett Favre…and ask yourself when a younger QB with a strong arm is nipping at your heels during a training camp in your future…I'm just saying.
Monday, September 7, 2009
I am on the verge of speaking like this all the time (and using the real F-word, not symbols). I am on the verge of being sucked into what I consider the New Jersey Rude Culture. I am trying to resist the Culture the way a good Jedi fights the pull of the Dark Side of the Force.
Rudeness plagues the nation. Just watch the news and what passes for health care reform debate. Nearly 70 percent of people questioned in a 2005 Associated Press-Ipsos poll said people are ruder than they were 20 or 30 years ago. The poll was referenced in a recent Chicago Tribune article about rude behavior in college classrooms and beyond.
I've been back in New Jersey, the place of my birth, for about six weeks. Here, rude has been elevated to an art form. The mix of foul language, hand gestures and obliviousness of fellow human beings - often fueled by hyper-caffinated drinks - is much more intense here. People who experience it for the first time are often left speechless.
I am experiencing 'Jersey rudeness for the first time in three years. I am often left speechless.
People here shout words that mean nothing into their cellphones, shattering the peace of all around them. Parkway motorists drive their cars up the ass of yours because you are driving 75-80 miles per hour in the slow lane...In the slow lane. People shout you down during conversations to make their point. Loudest and most obnixious wins. They are pains in the butt.
And, I admit with sadness, I can go there. I can definitely act like an asshole, but I try not to. Part of it has to do with getting control of my heart and lung sarcoidosis. I need to cool out and be chill. A calm, relaxed mind is essential to helping the body heal. there is no way around it.
I also think being decent, and respectful is the right thing to do. I see myself as a gentle giant because of nature and nurture. My mom and grandmom taught me to live by the Golden rule. I am a man who tends to keep to himself, minds his manners, keeps the peace and only lifts his hand in defense of the weak. The gentleness thrived to a degree in Greater Lansing, Michigan and Chicago.
I have no illusions about either place. The Midwest has its share of nuts, bullies, bigots, misogynists, all the people we should despise. But Midwesterners are quite polite. They say 'thank you' and 'please' and allow people the right of way. They hold doors for each other, offer to carry this or reach for that. They are respectful of personal space. The smaller the town, the politer they are. In Chicago, I managed a group of reporters who exhibited Type A personality traits. Those reporters could dig for stories and were as relentless as any reporters I've ever worked with, but they were also nice, decent people. They would bare teeth and unsheath talons, but knew how to put them away after hours.
These days, here in New Jersey, the teeth and talons are bared and unsheathed 24-7. (The customer service at Barnes & Noble in Howell, N.J., is a refreshing respite. I give this store props because it is a cool place to write. I love the vibe. Folks there are pretty polite, especially the baristas). And I am assuming that New York and Connecticut are as rude as ever, too. Curiously, you can still find polite people in Manhattan – so many people living there are NOT from there, you know?
I am trying to maintain my public politeness, but the Rude Culture might be winning. Every time I try to get out, it pulls me back in. Warning: I can be a real asshole. My cousin Dwayne likes to say that some folks are not assholes. They are the cheeks, the pimples on the ass, the crack…The entire ass. Yeah, I can be that, I fear.
I just want to be a good guy. I really do. New Jersey, you could really help, you know? Be decent, for crying out loud.
I'll try harder, too.
Friday, September 4, 2009
This "Bruschi" is for everyone who will be on the move this Labor Day Weekend.
Whether you are working out, walking a beach, whatever. I salute you if you move or are motivated to move. While the Bruschi I offer you sounds like the tasty libation, obviously it is not. It is actually the story of Ted Bruschi, a New England Patriots middle linebacker who recently retired.
I love pro football. I am a New York Giants fan (I am overlooking the Giants preseason loss to the Pats. We beat that team when it counted). I am excited to be back in a region where I can simply stumble into people who are Giants fans. No looking for that special NY/NJ bar in the middle of Chicago, or in the middle of nowhere. Here, I go to the super market, people wearing Giants gear. I go to the 24-7 store for coffee, people talking Giants. Awesome.
I love the New York Giants. I hate the New England Patriots. Understand this: I only hate New England sports teams (I won't even hot link to one of their teams. You like Boston teams? Find the link yourself). I love the region of New England. I especially love Greater New Haven, Conn. Lived there for years and want to return. However, I cannot cheer for any team from New England. Can't do it. I am from 'Jersey. It might be in my DNA to hate teams from New England. I’ve tried, but I cannot help it.
However, I am a Bruschi fan because it is inspirational. He was a tough defensive lineman in college. The Patriots drafted him in the third round and converted him to linebacker.
Bruschi was no Lawrence Taylor (left) or Mike Singletary (right). Taylor was a beast. It's hard to imagine Taylor doing anything in life except destroying offenses. Really.
Singletery, now the second-year coach of the San Francisco 49ers, was a fierce tackler. He was/is bright, articulate and a proven leader. Bruschi...I always saw him as an everyman. His surname even sounds like the alcoholic beverage of choice for blue collar Americans...what is left of blue collar Americans anyway. The guy studied hard, worked hard and, when called upon to do so, devastated opposing offenses.
Bruschi's story is one of many from which I draw inspiration to continue my fight against heart and lung sarcoidosis. In 2005, he suffered a stroke. Slow down, they said to him. Take it easy, they said to him. At least you already have one Super Bowl under your belt. I am sure he rested for a while, but he also fought back, reclaimed his health and went on to play in four more Super Bowls with the Patriots. He has five SB rings.
Today, I did not want to work out. I spent the whole week with family, including running my grandmother on errands, and I was spent. However, I forced myself to walk nearly four miles and pumped bar bells because I want to get well and because I know there are people out there who are worse off than me and would kill to just be able to walk down the hallway of a house without getting winded.
I’ve been there. In March before I was hospitalized, I could hardly make it up a flight of steps. I would take breaks after simple tasks like showering, brushing my teeth, washing dishes. I could not scrub a bathroom or mop a floor without taking many breaks. Now I am trying to drop weight (prednisone be damned!) so I can run.
I work out with the likes of Bruschi in mind. I won’t play in a Super Bowl and I am cool with that. The game of life is longer than four quarters and I am in it to win it.
Oh, and I hope I get into good enough shape to start a contracting business helping companies as Office Linebacker. That would be awesome. Chick here to see!
Enjoy the Labor Day Weekend.