Things Are Looking Up.

Last week was a good one. For starters, my raging nerve pain (you can read about it here) responded to my second cortisone shot. The pain is not completely resolved, but it has gone from excruciating to annoying, and I can live with that.

The real big news involves stepping on the scale, which I did last week for the first time in months. I weigh myself only sporadically, so as not to obsess about gaining weight, and to avoid disappointment, as the weight is coming on ever so slowly.

But it’s been a while and I just had a feeling the news would be good. Well, it was beyond anything I could hope for. I weighed a whopping (for me) 105. I stepped off and on the scale four times just to be sure it was real. And then I weighed myself again two days later. Again to be sure. 

Getting this far is incredibly significant for me. If you’ve been reading for a while, you know I weighed 81 pounds a year and a half ago (I’m 5′6″). I don’t have the words to describe the terror involved in weighing so little. I could count every rib. My arm bones were protruding. My abdominal area was concave. My hair was falling out. Now I wish I had a good photo from that time, but it was not a moment I wanted to capture. 

I weighed 118 when I first got sick. And that reflected a recent weight gain due to strength training. So really, I was about 115 before I added muscle. I long ago gave up on ever seeing 118 again, as it was a stretch to get there even when I was healthy. But I told myself if I could just somehow, some way get back to 110 I’d feel pretty good about life. 

Well, I’m within spitting distance of 110. There were so many days when I never thought I’d get this far. For eight years all I did was lose weight in spite of desperate, frantic attempts to do the opposite. It was torture. And terrifying.

But here I am. 105. I don’t have the words to tell you how hard I fought, clawed, and scraped for every single one of the 24 pounds I have gained. It has taken maniacal, ruthless determination and dedication. And I had to give up most solid food. Yes, I’ve been on a primarily liquid diet for the past year and a half. I eat real food once per day, and the rest is a special, pre-digested protein shake called Absorb Plus

And that’s where we come to the mixed blessing of all this. While my weight gain is fantastic, it has happened because of a band aid (liquid diet) and not because anything in my GI tract is actually fixed. Many have tried but none has succeeded in unlocking the mystery of why my GI tract shut down. The Mayo Clinic diagnosed a severe motility disorder of unknown origin, lyme doctors say it’s because of lyme disease.

The Mayo Clinic had no answer except hope and a feeding tube. I said no thanks to that. 

Lyme doctors tell me if I can get rid of the lyme my GI issues will improve. Maybe they are right, but maybe they are not.

I’m in a very vicious cycle. Part of the reason I haven’t been able to kick lyme is because the road out of lyme goes through my GI tract, which cannot tolerate the medications commonly used to treat chronic lyme disease.

If I think about all this too much I become overwhelmed and afraid and it all feels so hopeless. Will I be on a liquid diet forever? Will I ever really solve my GI problems, or will I always be covering them up with band aids?

I don’t have any of those answers. And when I get overwhelmed, I simply bring myself back to the present, and focus on what I can control. I remind myself I’m gaining weight. I remind myself I’m not dealing with stomach pain, nausea and feeling unpleasantly full 24/7. Those are all big, important things, and are not to be overlooked.

I’m meeting with a new GI guy in a couple of weeks. Maybe he will have some new ideas and answers. Or maybe he won’t. Who knows? The only thing I know for sure is that I will never stop trying. 

I have 110 in my sights, and I will not take my foot off the gas until I get there. 

The rest will sort itself out one way or another. 

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