Anniversary

Yesterday, while listening to Neil Cavuto's afternoon business show on FOX I was struck by his guest. Ann Romney. Yes, she's the wife of Mitt Romney, 2008 Presidential Candidate and former governor of Massachusetts.

Neil spoke of generalities with her. Very typical questions at first: what's it like to be the wife of a Presidential candidate; They've been married for 38 years and what's their secret (no secrets and belief in one another); is your husbands schedule too hard (sometimes yes, Mitt should slow down and take a breather); Is the schedule hard on you (yes, sometimes, but when I need to I take a break). Then came the bomb-shell question of the interview - How do you feel the American people will react to you if you end up in a wheel chair? (couched a bit differently but memory and context is relatively accurate.) Mrs Romney answered in a very intriguing way, she said that she has faith in the American people to see beyond a physical appearance or a disability and look to substance and practicality over the visual.

Neil then stated something along the lines of, "for those in the audience who do not know, like your host, Mrs Romney also suffers from MS (Multiple Sclerosis).

Now I knew from some limited research I did a while ago on Neil Cavuto that he's been suffering from MS for quite some time. In fact he's an anomaly of sorts because his world renowned doctor has told him on many occasion's that he might not live long enough to require a wheel chair. But with attitude, choice, determination and conviction, he's continued to plug away at life which has brought him to where he is today, recognized top financial commentator in the world.

Neil's story is a very impressive one, and his reactions to his medical condition is even more intriguing. If you have some time, please do a bit of research on the man and find out for yourself. From taking a spokesperson position for MS Foundations, charity work, leadership for those afflicted with the disease, his interests in his family and commitment to life in general make for a very inspiring read. But, this blog is not a pompon romp about Neil, its about a couple of people I listened to yesterday that struck me as both interesting and intriguing all the same. It was a ground shift more in my understanding of myself and realizing that others, like me, others before me, have made similar choices in life. Fight for life. Fight for all its worth, enjoy what you have when you have it, enjoy the people around you. Smile, lead, embrace, listen, understand and love. Sometimes traits that are unquantifiable at times until its too late, when everyone assembles for memory and honor.

My story is not as expeditious as Neil's or Ann Romney's, at least in the schema of publicity. But the feelings and attitudes are the same.

Back in the day. In 1997 I was the most active I'd ever been in my adult life. I was in as good or better shape than I'd been since my HS days. I was mountain biking about 15 miles daily. I'd taken up running and was doing about 6 miles every other day. At my best I was a very fit 240 lbs, totally bulked up. It was also a portion of my life that I explored a more inward presence. Keeping mostly to myself, I was introspective and explorative of where life was taking me and why. Mentally not a pretty time, otherwise, outwardly, vastly different.

It was a colder October that year. I'd been working medical emergencies for the better part of a night and came off the road tired and drained. An ache had developed in the palm of my right hand earlier in the day. It was a persistent and resilient one to even the most powerful OTC drugs. I tried to remember having had smacked it anytime during the previous week or to have over-stressed it in anyway. I'd tried like the dickens to use my left thumb and hand to massage the pain away. Make the soreness leave. It only seemed to get worse.

The next day I awoke and was again confronted by this dreadful ache. Running was out because any time I'd take a stride the pressure of my hand counter-balancing my gait would send shooting pain through my arm. It hurt. I grabbed my bike and went for a 2 mile ride. I couldn't grab the handle with my right hand like I wished. My fingers were stiff and not coming around. They weren't flexing properly, especially my middle finger. I had to stop my routine and take it easy. I was also set to ride a late tour on the ambulance and so I rested a bit more and then started my tour.

After a few jobs I became concerned with myself. I was favoring my right hand. I was asking my partner to grab the release end of the stretcher. The leg/wheel release is on the right end of the stretcher and as such, you pull the loaded cot out of the back of the ambulance and when fully out (but with built-in safety), release the legs to the ground. This handy contraption lets you skip a couple of steps and saves your back from having to bring the cot out of the ambulance, down to the ground, and then lift it up to full height again.

After a couple hours I tried to look past what was happening to my hand. I was driving with my right thumb because my middle finger was now contracting toward the palm. Then I became scared because the two neighboring fingers also started an inward contraction toward the palm. Now 3 hours later and heavily favoring my hand and calling for backup to try and move patients I couldn't stand it any longer. I asked for a part-day immediate medical leave. I really needed to get this checked out and find out what was going on.

I also began to notice that my wrist and elbow on my right side was aching now. I thought it very strange because I hadn't had any pain in a week now. (I was now attributing what was going on to an incident in the pine barrens while mountain biking down a sweep trail. In that incident, I hit a tree root at high speed, blew out a tire and heartily ate a tree.) I was beginning to think this problem I was experiencing was a resultant anomaly to my impact with a very hefty oak tree at speed. Something latently neurologic must be going on.

I called for an immediate doctors appointment and alas they only had a time available for the next day. It was a long night of not sleeping letting every unknown and aggressive condition which I might be experiencing go through my mind. I was dwelling.

After little sleep I got up and needed to make an effort to take a shower. Now my left arm were hurting and very sluggish and stiff. I also noticed my right hip was hurting as well. I got dressed and needed to really concentrate on driving. Skills and coordination were not coming easily, but I made it. I waited to see the GP.

After a thorough examination and allot of blood taken I was told I probably had a virus, Lyme. It was affecting my motor skills and muscles and that with time it would pass. There were great new medications on the market, antibiotics, that within a few days should help. Thankfully, the doctor I went to also knew of a really good doctor and program at Stony Brook University Hospital. In fact their practice and main office was right down the street. A quick call over and I was on my way to meet with one of their specialists. The specialist would confirm that it was Lyme with blood work.

I went to the doctor, met him and went through the most extensive physical examination I'd ever been through. The blood titers would tell the presence of Lyme antibodies. He'd have the initial results back tomorrow. He was quizzical though because I didn't show any signs of facial involvement. He said he'd continue to test for everything including Parvo-Virus's. I was to come back in a couple days. He prescribed me Anaprox for the time being. The Anaprox initially seemed to work pretty well. The pain was subsiding, I regained some movement, but the aches were still there. The next day I got a call, please come in.

I went in and he said the initial titers came back negative for Parvo's which might exclude Lyme. He then stated that I might also be inflicted with RA (Rheumatoid Arthritis.) He then stated though that he'd continue to take blood and track the results and my next appointment would be in 2 weeks. He then said that the manner in which my symptoms were progressing, things would probably get worse before they get better. He then also prescribed me Prednisone and sent me on my way. Things did in fact get much worse. Much much worse.

Over the next few weeks I'd become, for all intensive purposes, bed-ridden. I would literally not be able to move for hours on end. Okay, that's a bit of an overstatement. I would be able to move, with extensive limits, but the pain generated by my internal disease was the worst I had ever experienced to date. Over the next week I couldn't appreciably do anything on my own. Eat, sleep, bathe properly, nothing. In between experiencing such bouts of pain, I'd sense my bladder beginning to fill. I was acutely in tune with my body processes. My bladder being the most important at that time. My mental gymnastics would then start. I would need to prepare myself, over the next 3 hours to get my body out of bed and take the 8 steps to the bathroom. Once there, I'd take another hour to prepare myself for the trip back to bed. Going to the bathroom, just feet away was literally, no joking, a 4 hour process. Tears, grimaces, unending, unyielding, excruciating pain. I'd never before experienced that feeling. It was totally and utterly debilitating and all consuming.

Over the next 3 months I was bumming rides from friends and relatives to the doctors office because I was not well enough to drive myself. My family and wife were wonderful and totally understanding of my condition. I researched and efforted all I could to understand what was happening to my body. The information was and is not comforting on any front, but, it was what it was.

For the better part of a year, the doctor stated that I probably have RA but that a final diagnosis was achieved only after a long and arduous process that rules out everything else. Late in 1998 my doc finally diagnosed and confirmed his suppositions with me that I had RA.

I tried like the dickens to educate my family to the disease and what the body process would be over time. I printed a bunch of data out for them to read. Sat them down and explained everything to them.

RA is tough on the patient and family and friends who care as well. You see, there are days where there are no symptoms at all. You feel great, can do anything, feel like you can pick up the world and carry it around at will. But, there are other days where you can't get out of bed. The pain is severe when its abundantly there. I use abundantly for a reason. Since 1998 I live each and every day of my life in pain. Its become second nature to forget about it at this point. Pain is measured on a scale of 1-10. 10 being the worst. I'd have to say that I'm at a constant 6-7 daily. Regular pain from cuts and bruises, strains, sprains, breaks, etc, barely register with me anymore. The level of pain would need to rise above the 6/7 level in order to get my attention. It really amazes doctors when they ask about my pain levels and tolerance for pain. I typically don't need anesthesia for stitches or out-patient surgeries. Doctors just dig in and continue to apologize for hurting me (when in reality, I don't feel it.) Also I found a very weird thing has happened to me as well. My quality of life has been a never ending issue. So far, knock on wood, I have not had to appreciably change my life to adapt to this disease, except in one way. I've found, as has a related study group at my doc's, that gaining weight has improved my quality of life. I'm about 80 lbs heavier than I wish to be, but with the weight I'm happier and more productive at life than I was at lower mass. Obviously there are counter arguments to be made about long term affects of one over the other, but that's something I discuss each time with doc and make educated decisions. I'd found that the amount of pain I'd been experiencing was gradually increasing and really becoming debilitating. I'd begun to challenge my rational thoughts of living life as they came. Meaning - I was beginning to assess whether or not one of the potential last ditch treatments for RA - Bone Marrow T'plant - was a worthwhile endeavor. In my specific case it'd have a 50/50 rate of success, with similar life expectancy through the procedure. It'd also cost upwards of $75K and not be done in the US, only the UK. (as a note I've finally come to the realization that if the pain became so sever that I couldn't function on a daily basis, interact with family and friends on a level I could agree with, that I'd go for the BMT. I hope it won't come to that, but its a mental decision I've made.) The doc then gave me some internal research data on a group of people who gained weight and experienced a better quality of life. I did so and have experienced much better quality to my life. I'm trying to temper things a bit to arrive at a more harmonious level between the two at this time, but am happy to be relatively pain managed at the time where I am. That's why I'm huge now.  

I said this entire disease is hard for family and friends because they know me to be this big gregarious guy who likes to have allot of fun and entertain. I love family, friends, parties. Unless its a bad day. On a bad day all I want to do is be in bed and rest. So there's the dichotomy of the disease. Today I can attend a birthday party of FAV and tomorrow I wouldn't be able to get out of bed to attend my best buds. Its not because I don't want to be there or any other reason, its just because of how I'm feeling at the time and how quickly things change (literally within minutes.) Thankfully its been months since I've had to spend the day in bed and have really tried to ramp up my physical activities as much as possible until I get push back. I hope to be able to do more soon. After surgery (unrelated) I will strive for more productive and noticeable results. So, its an emotional roller coaster for everyone around me and I beg their forgiveness for having this disease.

I authored this because I've come to the 10th anniversary of getting RA. Like the people I mentioned during the outset, I'm not looking for pity or empathy, counsel or get well cards. I'm just trying to live each and every day to the utmost. Enjoy family and friends as much as possible, do as many things and go as many places as I can while I can. I want to participate in this life and leave it, when the time arrives, knowing I've grabbed and attained as much as I could have, and brought everyone around me with me as well in enjoyment, glee and productiveness. I want to always look at the good in life rather than the sorrow. Lend a helping hand when I can, just for the sake of helping. No prizes or honors, those are for others. Just being there at one specific time, when needed, is all the accomplishment and reward I'd like.