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.
This Was a Moment.
I’m still playing catch up, so this happened back in December.
First, some background. I love Bruce Springsteen. I mean, I really love him, and have for many years. Also, my beloved late brother loved Springsteen, so when I listen to the Boss, I feel my brother, which makes anything Springsteen-related doubly meaningful for me.
Last November, Bruce started a limited engagement on Broadway. It’s a one man show (save two songs with his wife) that cannot be categorized. It’s not a play. It’s not a musical. It’s not a concert per se. It’s an intimate evening with Bruce. Just him, his guitar, his harmonica and his piano in a 900 person seat theater. It’s a mixture of autobiography and song. I read all about the show and desperately wanted to attend, but it was sold out by the time I looked into it.
Now, flash back to a November evening at our home. My husband, daughter and I were casually chatting at the table after dinner. Somehow, the discussion turned to Broadway, which made me think of Bruce, and here is a near verbatim recounting.
Me: I would DIE (major emphasis on that word) to go to that Springsteen show, but it’s sold out.
Long pause.
My husband: No, it’s not.
Me: Yes it is. I checked.
My husband: No, it’s not.
Me: Yes it is. I know for sure.
My husband: Well……. there’s one ticket……. and it’s yours.
Me: (stunned, heart stopping) What?
My husband: You have a ticket.
Me: (still stunned) No. Wait. No. Seriously. No way. No way. NO WAY.
My husband: It’s all set up. I’ve booked your hotel. You’re having dinner with the Dwecks (good friends in NYC) the night before, and then you have the concert the next day. Cecilia already talked to the restaurant to make sure they can accommodate you. Everything is taken care of.
We went through a few more rounds of this before I truly believed it. This is the most thoughtful, wonderful, extravagant surprise of my life. And so well timed.
Before I got sick I had a big, interesting life that involved frequent travel and embracing of new experiences. Then I got sick, and my life slowly shrank into a pinhole. Now, I am on the long road to recovery, and am working to expand my world again.
The complication is I’m not the same person I was before Lyme manhandled my body and mind. Struggle forces you to grow, so I have evolved in many ways that I like and enjoy. But certain things that used to be easy are now hard. Or at the very least, less easy.
I used to travel to New York frequently for work and pleasure. I love the city, know it well, and it’s never been a problem for me to navigate it. But this would be my fist time traveling to the city on my own in my new reality.
Let’s go back to the night my husband told me about the trip. I was incredibly excited. Excited to see Bruce, but also excited for the above. I felt ready for this new challenge, and saw it as an opportunity to re-connect to a part of myself I’ve been missing. I told myself I was going to get on that plane, go to that city, and reclaim a piece of myself.
And that’s exactly what I did.
The trip could not have gone better. I felt capable, competent, strong, brave and independent. All adjectives that have been missing from my life for quite some time. I navigated the city with ease, met my friends downtown for dinner, and I never felt afraid. Was I anxious at times? You bet. But no more so than when I’m sitting at home. So, nothing to worry about there. (Remember, I get anxious every day. It’s just less loud now, and therefore less limiting).
And the concert. I don’t have the words to describe it, so I won’t even try. It was a spiritual experience for me (and for just about everybody there, as far as I could tell). Gripping, emotional, beautiful. The story of a man who spent his life using word and song to wrestle and overcome demons. At times you could hear a pin drop. At times, the roof felt like it would come off. The whole experience was just stunning.
And the best part of all? I took my brother to that concert with me in the form of a button with his photo on it. AND, I found a way to hide that button in the theater. It brings me so much joy to think about my brother being serenaded by Bruce, night after night. You have no idea.
I’m so grateful to my husband for doing this for me. Even though he is my rock and number one supporter, I know he feels helpless sometimes and wishes he could do more. When he planned this trip, he knew it would be about more than the concert. He knew he was handing me the keys to a piece of my former life, and he knew how much I needed and wanted that.
I love him beyond words, and I’m so blessed for the abundant ways he has made this hellacious journey just a little less so by his deeply thoughtful words and actions.
Swimupstream 