Jim's Place

"The Singing Stairs"

Over the last few months, I've had a lot more difficulty going up and down my stairs due to knee pain. I figured it was just arthritis and that maybe at 60, it was just going to be something I had to struggle with from now on. During the rough spell of the last couple of months, it got to where it was taking me a couple of minutes to get down the stairs right after waking up. I had to turn sideways and hold on to the rail and go very slowly.

A key aspect of this rough spell has been grimacing with any exertion, so coming down the stairs was effectively a chorus of winces, grimaces, groans and moans - highlighted with an occasional "Son of a gun!" (Of course, I didn't cuss!). It sounded pretty awful, but the harmony was actually quite impressive!Especially since my stairs are kind of like a shower in that the sound bounces off the wall and gives your voice some nice reverb.

Then I got a novel idea... I sing in the shower, why not sing when I go down the stairs after waking up?! With my renewed interest in singing, it'll be good practice and it sure sounds better than the moaning and groaning! So I've had a nice diversion from the pain and instead of dreading hobbling down the stairs, I've actually been enjoying it, singing whatever comes to mind. Sometimes it's a favorite song and sometimes I just make one up as I go along!

With the surprising improvement in my knees in the last several days from the new fibromyalgia med, I can whiz down the stairs without a problem now. (Shazam!) But I still take my time...and it's even more fun to try out different songs with the enhancing effect of the staircase reverb. Funny, that in the midst of adversity, pain led me to a joy that I might not have discovered...an opportunity for joy that had always been right in front of me. I don't wish pain upon anyone, but I do hope that even if you are hurting every day, that in some way you find the same kind of joy I did when I discovered "The Singing Stairs"... :)

"Put me in coach!"

With a chronic fatigue condition, you can't use the usual approaches to exercise. Typically, with normal health, you don't work out when you feel sick. Common sense says you just wait until you're feeling better. Sounds reasonable!

But what if you are always sick? Day in, day out, year after year? Do you just forget about being an athlete again? Do you just settle for being fat and out-of-shape? Do you just accept the conventional wisdom that suggests your days as an athlete are over? And even if you manage to get in a workout here and there, can you ever expect to achieve a high level of fitness again? Especially considering that with a chronic illness, serious setbacks are almost inevitable and are very likely to occur quite frequently. Why set yourself up for all of that frustration? No one would blame you if you just parked it on the couch and took it easy... Time to just sit in the stands and enjoy being a spectator...

For the last 15+ years, the harsh reality has been that if I'm going to exercise at all, I'm going to have to push through a significant level of illness and/or fatigue. The question isn't if I'm sick, but rather if it's at a "workable" level. Sometimes, it's mild, but often it's at a profound level, with my body screaming "No way!" It's been a careful balancing act, using mostly instinct to determine how much I can get away with pushing against what my body is telling me. Fortunately, those same instincts that had so many times pushed me to work out when it seemed impossible were screaming this time "Don't do it!" They were right. It could have been dangerous with such low thyroid levels.

I'm sure to some people, constantly fighting the odds to pursue a high level of fitness, while dealing with an overwhelming and erratic chronic illness, seems rather futile and just adds undue stress to an already chaotic situation. Granted, sometimes it does seem like I'm trapped in a perpetual Whack-A-Mole arcade game at Chuck E. Cheese - and every time I pop up - make a big comeback - that same angry kid smashes me with the mallet yet again! I keep thinking this bully will give it a rest, but he just seems to have an endless supply of tokens...

Friday I added fibromyalgia to my medical "portfolio" and today I learned that I have a severely low thyroid level. Although I have a low thyroid disorder - hypothyroidism - I've had it monitored frequently and take my medication every day. But the TSH result of 42 means my levels were extremely low. That explains why I've been so sick, but I still have no idea what caused such a dramatic change in my thyroid condition. Anyway, I start on new meds tomorrow to address these issues and I'm looking forward to yet another big comeback.

Of course, it gets awfully frustrating to work so hard to make progress like I did in 2013, and then have such a rough year like 2014. But even at the age of 60, I'm still an athlete and I've okay with facing such "injuries". And just like an athlete in their prime, it might be stressful to constantly be overcoming injuries, but then again, not nearly as stressful as sitting on the bench or being relegated to being just another spectator in the stands... when you know in your heart, that despite it all, you still belong on the field... that you can never settle for anything less than doing your best to get back in the game... :)

"Are you ready to rumble?!"

Hi guys. Happy Friday! Well, I managed to get to sleep before sunrise, but then I didn't wake up until after the sun went down! Crud! What's that all about?! Maybe all those hours on the couch wore me out! Actually, I think it's probably the stress of not feeling well enough to ride my bike! I think it's called hypobikeism!

All jokes aside, as optimistic as I am, there's a lot of uncertainty and fear that just goes with the illness inexplicably elevating to a level that knocked me off the bike for most of the last two months. Even with my faith and happy camper attitude, there's still that churning inside that suggests maybe riding the bike is no longer going to be a regular activity for me...that maybe none of the doctors will be able to figure it out and that this is just the way it's going to be...

Well, I've been here before... In 1998, after being sidelined for almost 2 years, I discovered that I had severe sleep apnea. After a few weeks of using a CPAP machine, I was back on the bike and in May of 1999, completed a 100-mile bike ride.

In 2001, I felt like I was dying, despite my doctor mistakenly insisting it was depression. I eventually find out it was complete pituitary failure and that I indeed was in serious danger. After a few months on full hormone replacement therapy, I was at least able to ride my bike around the neighborhood...

In 2004, at my heaviest weight ever - 330lbs - I was no longer able to ride the bike and was as sick as I'd ever been. My doctor had no explanation and said that he was sorry, but that this was just the way it's going to be... After experimentation with my hormone meds, I managed to improve enough to drop over a 100lbs in 2005 and was back to doing long rides on the bike, although the illness sidelined me by the end of the year.

In 2006, a new specialist stunningly theorized that my pituitary gland could possibly be restarted. This began a rough 3-year process of repeatedly trying to jump start my pituitary gland by gradual withdrawal of my cortisol med. It put me through a lot of hell and it seemed like it just wasn't going to work, but in 2008, my pituitary gland fired up - after being dead for 8 years...

But in the spring of 2009, I was sicker than I'd been in years, even with a functioning pituitary gland. I was crushed because I had such big dreams for a new life... By the summer though, "Dr. Jim" suspected I had Celiac - the gluten disorder - and then medical tests confirmed it. That led to the big comebacks of 2009 and 2010 - where I was able to complete my first 100-mile bike ride since 1999.

2011 and 2012 were a bit of a shocker, with most of my riding being on the couch! What the hell happened?! I eventually determined that my underlying issue was an autoimmune condition - where the immune system attacks the body - and that triggers sick as gluten and pollens were bigger factors than I realized. I'd already been on a gluten-free diet but then I started an aggressive allergy shot therapy regimen. That led to my big comeback of 2013, dropping over 90lbs and competing in two time-trial races. Shazam! Now we're talking!

However, I was still quite sick in 2013 and despite the improvement, suspected that something big was still being missed. So having such a rough year in 2014 wasn't that much of a surprise. Granted, being so sick the last couple of months has rattled me a bit, but all I can say is "I've been here before..." I don't know what the future holds, but I do know this... I never threw in the towel before and I'm not doing this time. So many times the world hammered me with logic and insisted I was being unrealistic, that the odds were overwhelmingly against my dream of getting back on the bike...

But as well-intentioned as all of that advice was, they were all wrong. I not only got back on the bike after each supposedly insurmountable medical obstacle, but I rode the bike like a madman. And once again it seems like returning to the bike in any serious manner is against all odds. But I'll be damned if I'll listen to that voice that's trying to tell me that I've lost this fight... that's trying to get me to settle for just being a spectator. At 60, I'm sure that sounds reasonable, but I just don't believe it's time to hang up the gloves. The fighter in me is as alive as ever and I'm determined to get back in the ring. And I'm not looking to just make a token appearance - hanging on the ropes and hoping to get in a punch or two. I'm in it for the win.

I know the odds are against me, but I don't believe God brought me through all of this to just go out with a fizzle. My body is struggling, but my mind, heart and soul are ready to rumble. So ladies and gentleman place your bets... the fight begins now... :)