On December 7th, I had a doctor’s appointment for my back. My doctor asked me to get up on the table, but then she offered to do the exam while I remained seated in the regular chair. Gratefully, I agreed. I can climb up onto those exam tables, but getting down is even trickier.
She felt and prodded down my spine and the surrounding muscles, up to mid-back and down around my hips. Whenever she asked if there was tenderness, I said yes. Usually, I say something like, “Yes, but that’s always tight and sore.” No longer do I say “Not really.” I don’t try to downplay my pain or be “tough” as we are trained to do. In daily life, yes I function with pain and it’s a normal part of my life. But when I’m at an appointment for pain, I own it. Why yes, actually, since you ask, my whole body is tight and painful.
She put in an order for an x-ray and we moved on to my throat issues. I haven’t followed up since the upper endoscopy in October led to the diagnosis of reactive gastropathy. Again she gave me the same options as before: new ENT referral, referral to integrative medicine, and imaging of the throat (like for a tumor or something else external and not visible from inside the throat). I do have my original GI video appointment in January, which was scheduled before I was able to get in for the “urgent” endoscopy. Since the diet changes and the stopping of all NSAIDs haven’t seemed to improve the gastropathy, I’m interested to see what the GI will suggest. It’s funny, now that I have the diagnosis of an inflamed stomach lining (which didn’t seem to match what I was feeling), I am making connections I didn’t before. Symptoms of reactive gastropathy include feeling full too soon, loss of appetite, and weight loss. Those are definitely not me. But other symptoms are nausea and pain/discomfort in the upper abdomen. And those definitely are me; I’ve just been attributing those to other things. I’ve not found anything connecting gastropathy and throat pain per se, which is the symptom that started this whole thing.
Anyway, I went over to have the lumbar x-ray right after my doctor’s appointment. It’s only the second x-ray I’ve had in my adult life. I was asked to get into several positions on the table, and then had several more taken standing.
The results revealed that I do not have a compression fracture or narrowing of the disc space that would cause bulging discs.
I do have mild arthritis at the facet joints of the lumbar spine.
Truthfully, it felt like a bit of a blow. I’ve known since I was a child that doctors predicted arthritis for me by age 40. But to have it confirmed, and in a part of my body that I don’t even think of as one of my main trouble spots, well, it was emotionally rough for a day or so. Because it’s not going away; it’s only going to get worse.
My dad reminded me that the skeletal system peaks at 30, and that anyone who makes it into their 30s will therefore not have a perfect spine. What’s more, when my physical therapist looked at the x-rays, he said that I was “blessed with beautiful spaces” between each vertebra. So really, at 39 with CP, I could infer from this information that I’m doing pretty well.
So I have arthritis. Obviously, it was there before November 1st when I injured my back. The arthritis isn’t the culprit in this situation. I could, if I wanted, start looking at treatment like a facet block, a nerve block injection in my spine. But the pain isn’t the problem. The added pain–I’ll say usually a three on the highly subjective pain scale–fits right in with all my other threes/fours/fives and isn’t something that I find overwhelming right now. It’s the decrease in function. I don’t trust my body to get me where I’m going. I mean, I trust it even less than I did before. It’s gotten better, yes. But I’m not where I was pre-November. And it’s possible this is my new normal. If this is my new normal, where does that leave the ExoSyms?
At my last PT appointment, on December 16th, my back was already flared upon arrival because of the walk there. Once it’s flared, that’s it. Nothing’s making it better, but some things could make it worse. So all of the “Let’s try it this way–does that help? How about this way?” All those attempts result in, “No, no better.” Frustrating for the therapist, but normal for me. So we are still at the very beginning. My gait produces a side-to-side motion that hurts my back. I need to strengthen my core and glutes to try to combat the side-to-sideness. But it’s always going to be there to some degree: that’s what having CP is. We don’t want to move too fast and reinjure it, or keep it constantly flared. So I’ve been given the same exercises with variations I’ve been given by various therapists over the years. My PT says maybe just we keep working on my back. And don’t do the exercises every day. Try every other day to start. How nice it was to not have the “three times a day” expectation put on me. To be told to take it slow. Maybe it’ll be a few more months. I can’t deny I felt relief being given “permission” to stay out of the ExoSyms.
I’m afraid to put my Exos back on. That’s the truth. The longer I go without them, the harder it feels to start again. I don’t want to put them on and hurt my back again, or fall on my tailbone again. Even if I don’t full-out hurt myself anew, I know my back will hurt.
I knew it would be a long, slow process. But I didn’t really contemplate injuries or months-long setbacks, which is a good thing. It’s been six months now since my trip to Hanger. This is day 200 that I’ve owned my ExoSyms. The first day, Ryan said, “You’ll use poles in the beginning, maybe for the first six months.” I knew this was an estimate. I knew that everyone’s journey is different. I’m fine if, years in the future, I’m doing well and look back on my first six months as a bit of a wash.
But sometimes this crosses my mind: What if the ExoSyms aren’t right for me? What if they’re just too much for my aging body to handle? It’s entirely possible. I can’t deny it. There are no guarantees. This whole thing was an experiment from the start. Then I remind myself, give it a couple more years.
On this final day of 2020, this is where I am. Mentally and physically tired, full of doubt, lacking motivation. Eating lots of cookies. I want my montage song to start, where I face my fears and strap my Exos back on and end triumphant. I want my montage song and I want a nap. I’m not making resolutions or forcing myself to recommit to a list of goals. I don’t know what will happen in 2021. No one can know. There’s comfort in that. Possibility.
What Happened to Your Legs? 