I have TMS. I want Surgery Anyway

You're right - I've taken all kinds of steps to make it an easier trip than I'd take if I were "healthy". No camping (motel nearby, bike mechanic coming to my home to prepare the bike), short, leisurely rides just to get me out there. You're also right about being through too much shit & bouncing back & forth between negative & positive... that part is the struggle between how I'm 'wired' (neurotic, Jewish NY'er with an overachiever's brain in a lazy-man's body) and how I'm trying to be (more glass half-full, gratitude, etc.).

I'd been working on building my endurance slowly but surely before I decided to go on the trip (that didn't happen until I got a little I became really certain that I could eliminate the pain with steroids - just a question of how much), but since this last hospital debacle, the hypoxia stuff has gotten so much worse that I've still not been comfortable scheduling my normal PT or even doing my light exercises. I get to the top of the stairs & it feels like my heart is going to explode sometimes. I'm hoping the hematologist can help & there might be some adjustments I can make to improve that...but right now it's the greatest obstacle since the ride will be at a modest elevation, making the O2 even thinner. But there isn't much that's going to stop me from going anyway. Riding that bike is my happy place, and not being able to do it for so long has really been tough. I probably should have sold the thing a year ago but I can't bring myself to do it.

 

You did it again! "riding that bike is my happy place..." followed by "I probably should have sold it a year ago ..." NO NO NO!!! If you love it and can still do it, even if somewhat modified, then it's good that you are pursuing it.

 

LOL thanks for keeping me honest there...you're right. That just comes from how many times in the past 2 years since my last ride when I'd walk into the garage & try not to even look at it because I'd been in such bad financial trouble & couldn't ride, so selling it (even if I promised myself to get another when I could ride again) would have been the right play. It was just the psychological effect that I was afraid of - as if selling it was a giant step towards my future life as a disabled person. I go back and forth - and I guess that's not that surprising when I think about the shape I was in just a few weeks back where I needed the wheelchair to attend a concert. Steroids are a lot like beer - they give you courage you probably shouldn't have....well at least before the horrifying hormonal time-bomb goes off & I start acting like a pregnant woman.

I ate a Chocodile (chocolate-covered Twinkie) & 2 poptarts last night at 1am. I'm not proud of it. The way I'm eating I should be obese - but I haven't gained a pound. So far my doctors visits (the ones I rushed back home to attend) have been uninspiring. The current plan is to stay on high dose steroids for the duration until I can get on Entyvio (3-6 months to determine efficacy, unknown # of months to duke it out with insurance company before I actually get it). That's a lot of months on the roids...and they will get less effective over time. The upside is it drastically reduces my reliance on the narcotics, which means I can think clearly & be more productive. Of course that's a slippery slope as well, because all of this financial pressure has me susceptible to my workaholic tendencie will put me back in the hospital right quick. My introspective nature is another double-edged sword...I'm a walking contradiction because I have an answer that steers me into a brick wall for every possible path forward. I do have some fear about 1 possible scenario...that I get to the end of all of this & find out that this is all a big TMS-mind-f#$k, in which case the 'answer' was right in front of me the whole time. That will piss me off.

 

Hold on to that last thought. That would be the best thing that could happen to you, and to me, and to hundreds of others on this forum still struggling!