People, public places are hazards for 'germaphobes'

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

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

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

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

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

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

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

Image via Wikipedia

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

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

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

I wonder how much a biohazard suit costs…

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

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

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

Wash your hands!

Cutting oneself some slack

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

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

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

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

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

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

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

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

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

And I have to cut myself some slack.

Injecting civility into the health care reform debate

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

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

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

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

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

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

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

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

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

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

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

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

'Suffering' to wellness

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

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

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

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

And he still smokes.

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

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

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

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

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

And still, I want a cigarette.

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

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

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

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

'Quest for a lid' update

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

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

Prednsione rewards and rage

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Quest for the right 'lid'

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

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

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

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

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

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

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

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

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

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

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

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

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

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



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

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

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



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

It was great to find some cool lids. Finally.

Consider rest if you are in a position to do so

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

It is said that sporting events are metaphor for life.

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

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

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

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

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

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

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

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

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

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

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

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

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