October 2020 – What Happened to Your Legs?

5 October–25 October

On Monday, October 5th, I went back to my primary care doctor to follow up regarding my throat pain. Because my pain is worse, she put an “urgent” note in to the GI, and my referral for January was moved up to October 22nd. How is that possible? Did someone less urgent get bumped? All I have to do is complain more and suddenly there’s a spot for me, not months in the future, but days? So I had a couple of weeks to feel really anxious about being sedated and getting an upper endoscopy. I had not realized this would be the next step, and it feels a little like overkill. My other choices were to go to another ENT, or go the holistic health route. These are all very different levels of treatment–how am I to know the best option?

I have tried to recommit to wearing my ExoSyms and doing my PT at home. A few days, I have done 100 squishes at lunch time in the time it takes for the microwave to heat my food.

October 8th was the first day with a high in the 70s (78), since…May? And the air quality was moderate. So I went for a walk outside. At 4:30pm. After work. Instead of immediately taking my Exos off. The walk felt pretty good. I’m going faster and I’m less like a wobbly colt. Afterward, my tailbone was achy. I notice that my spastic diplegia aches and pains are more quiet the less I do. Activity wakes them up. It’s an unfortunate truth that right now, I feel better pain-level-wise the less active I am. Despite the mild temperature, I was covered in sweat when I made it back home. And I was glad that I had gone.

Here’s an update from October 9th:

I have continued my daily meditation practice. One meditation I tried begins by telling you to say to yourself, “May I be well. May I be happy. May I be peaceful. May I be loved.” Then you think of someone you love and wish them, “May you be well. May you be happy. May you be peaceful. May you be loved.” You do the same for an acquaintance or someone you don’t know, like a cashier you see regularly, and then the same for someone in your life that you don’t get along with. It was an interesting exercise, but I didn’t quite feel joy flowing out of me like my guide encouraged me to feel.

On Saturday, October 10th, my husband took us on a day trip. On the freeway, a vehicle alongside us had those “my family” stickers on their window. But instead of cute little stick people and a dog, the “family” was different kinds of guns. I felt horrified, disgusted, deeply sad, and deeply mystified how anyone could become whoever that person was. And then I thought, “May you be well. May you be happy. May you be peaceful. May you be loved.” It surprised me, as I struggled against judging that person, that I recalled those wishes from the meditation that had felt foreign and awkward. I don’t believe that the thoughts of peace and happiness I sent out to the person in that car changed them in any way. But they changed me. My feelings shifted from horror and disgust to peacefulness. And that is a good change.

On the 14th, I had my thirteenth PT session with Exos. C did the required strength measurements again and noticed that my glutes are stronger. I could already feel this, so I’m glad it’s noticeable for my therapist as well. We streamlined my home program after I told her how I’d attempted and adapted the clock from last session. Now we are focusing on mat work without Exos, really trying to get my core to engage consistently and build stamina so it actually works when walking. Obviously, weight shifting and walking practice with Exos on is still expected as well. Our plan going forward is to meet every other week rather than weekly.

Here’s what I looked like on October 18th:

And here’s the side-by-side comparison for months three and four:

On Thursday, October 22nd, I had the upper endoscopy. Before and after the procedure were unpleasant, but the thing itself is a complete blank. Thank goodness. Everything looks “normal,” as I figured it would, based on the ENT follow up I’d had. Except for some “granular mucosa” in my esophagus. Maybe that will be something?

I feel like doctor-patient communication has a long way to go. I had never before met this doctor when he came to my curtained cubicle to go over my history prior to the procedure. We’re in a very loud environment, both wearing masks, and I feel like we’re not speaking the same language. Somewhere in the huge litany of questions, I told him I was diagnosed with celiac disease in 2018.

“You have celiac disease?”

“I had the blood test.”

“And who did that?”

“Dr. —”

“Who?”

“Dr. –” I’m referring to the integrative health doctor who ordered a slew of labs for me two years ago, but whom I haven’t seen since because I feel like every doctor should treat the whole patient, and that I don’t want to schlep to Sacramento when I can walk to my local hospital.

“I don’t know that name.”

“I think she even works in this building.”

“Oh, I know who you mean. The gold standard is an endoscopy, so I can take a biopsy while I’m in there.”

“Well, I haven’t eaten gluten in two years.”

“You haven’t eaten gluten in two years?”

“No.”

“Well, I don’t think anything will show up then.”

“Right.”

Many people choose not to (or can’t afford to) follow up a positive celiac blood test with an endoscopy. Did he think I was just going to ignore the blood test and keep eating gluten? I know any damage I may have had will probably have healed by now.

What I would like is for a doctor to review a patient’s history and test results himself instead of quizzing a highly anxious patient in a chaotic environment in which he can’t properly hear. I can’t remember the results of all my labs, nor do I know what they mean.

It’s over now, and I await the results of the biopsies taken. Though rest assured I will ruminate about the whole thing for a while to come. For instance, he asked me about chest pain, and I think I said I didn’t have any because “chest pain” makes me think of heart issues. But actually, the honking cough I have makes my chest hurt quite a bit. Is it burning? I think he asked about that? What did I tell him? And why didn’t he ask about SIBO? SIBO is common with celiac. I wish he had tested for that… How does a throat that hurts this much have no outward signs of inflammation? Do I have some sort of pain feedback loop going on?

Whatever I said to this doctor, he said it didn’t sound like reflux (ENT diagnosis). I tested his theory Friday night by eating chocolate (vegan, gluten free, really good dark stuff). Chocolate is not advised with reflux. Cue a huge uptick in throat and chest pain on Saturday and today.

On Saturday, while I had the house to myself, I did a nice long meditation and then I did my exercises and put on my ExoSyms for a more focused, extended practice session than I’ve had in a long time. In spite of all this non-CP related pain and health crud, I’m still trying to get stronger and use my Exos.

14 September–4 October

In the last three weeks, I have reached and surpassed the 100 day mark. In June, when I came home from the Hanger Clinic and marked the one hundredth day on my calendar, it felt very far away. I didn’t hope for any specific achievement, as I could not imagine what my progress would be by then. I did take a short walk outside on day 100. But it wasn’t particularly triumphant or celebratory. My husband could see that I was swinging my left leg from my hip, rather than really using my glutes and core to step.

If I were to be honest, I would also admit that, while I have technically owned my ExoSyms for more than one hundred days, I have used them for much fewer. Eighty, seventy-five days out of one hundred? That’s what the gaps signify in the “actual progress” graph below. There are periods of time where nothing happens on the ExoSym front at all.

I know, objectively, that progress is not a steady, uninterrupted line. But I didn’t truly know it until this journey.

Looking back at my notes, I see that these past three weeks haven’t all been stagnation. On September 17th and 18th, I made myself take a walk outside, that same twenty-minute loop I’ve done before, working up to walking to PT with my ExoSyms on my legs instead of on my back in a backpack. There were moments during those walks where I felt like I was reaching my regular walking speed, actually walking rather than think-stepping. That feeling of increased speed–was I finally engaging the struts properly and experiencing the energy return these ExoSyms were designed to provide? It was thrilling, for a moment. Until I stepped on a bump in the sidewalk and was thrown off so much that I nearly fell. How practical are these things going to be if I can only get them to work on perfectly flat, perfectly smooth surfaces?

I don’t have a Day 100 video, but here’s what I looked like on day 96, September 18th. I’m trying to show off my (occasionally) increased speed and my Ida B. Wells t-shirt:

Here’s the side-by-side comparison for two months and three months:

On the 23rd, I had my twelfth physical therapy appointment with ExoSyms. I told C about my falls and we discussed my pattern of losing my balance when turning, especially if I’m holding something. She gave me a new exercise to do, the clock. We have been concentrating on strengthening my weaker left side to combat the hip drop, and to encourage it to hold up my body long enough to allow my right leg to get a good step in. When I’m standing on my left foot and stepping through with my right, the right usually comes down early without a proper heel-toe because my left side isn’t doing its job.

The falls, then, are not surprising because I am again standing on my left foot, stepping with right, turning the upper body, etc. The left side needs to be able to hold me up while the rest of me functions, basically. The new exercise has me standing on the left and moving my right foot to different hours on an imaginary floor clock. I am one hundred percent holding on to furniture while I do this. For reference, I have never had the ability to stand on one foot, and if I were ever going to try to work up to it, the right would have to be my standing leg, not the left.

The whole situation is a little funny because as soon as C watched me attempt to point to twelve o’clock with my right foot, without ankle flexion and the added weight of the ExoSym, she realized that what we needed was the stability the Exo gives my on the left, but not the complication of the Exo on my right. Rather than actually taking off the right Exo and being lopsided, we kept going.

The following day, a Thursday, I did my exercises and I did my small loop outside. And that was really the last time I did much. I actually overdid it, I think, and felt sore (tailbone) and tired the next day.

Monday morning, the 28th, I was going to make myself put my Exos on after three days without them. As I did, I saw that the small metal piece screwed to the front of the right knee cuff was missing. This one has actually fallen off a few times, and I haven’t been diligent about checking and tightening the screw that holds it on. This metal piece is what the knee section locks on to to stay in place. Usually, it’s right on the floor at my feet, but this time it was nowhere to be found. I thought I could just get another one at the hardware store, but when I sent Ryan a picture and asked what it was called, he said it’s not at the hardware store and that he would send me one that day. It didn’t arrive until Friday. Could I have worn the Exos without the knee sections? Yeah. Could I have practiced the clock with just the left one on, just to see what it was like? Yeah. Did I? No. (For the record, I have in the past worn my Exos without the knee sections, and it was a fascinating combination of way less bulky and heavy but also way more unstable.)

So my Exos were all back together by Friday. Today is Sunday. I did wear them yesterday, and I even did the clock a few times. But my ExoSym life has been derailed by the rest of my life.

Whatever we’ve got going on healthwise, stress and anxiety make it worse. Health issues can also cause stress and anxiety. So we are in a circle that is difficult to get out of. This is an ExoSym and cerebral palsy blog, and no one’s really interested in your ailments as much as you are, I know. And I’ll never know if you stop reading now.

I’ve had a low-grade sore throat for a year-and-a-half to two years-ish. It was always worse on Mondays when I had to return to work and use my teacher voice. Eventually, it got bad enough that it felt sharp, like something viral. It ended up being mild strep that time, May 2019. Months later, when the soreness hadn’t gone away, I got tested again and it wasn’t strep, so I was sent to an ENT (further months later, of course).

He could see inflammation and diagnosed me with laryngopharyngeal reflux (LPR). Since my diet is already pretty good and I don’t smoke, the best he could do was “bring down the spicy food from hot to medium,” and he got to check off that he discussed diet and lifestyle changes. Gave me a prescription for three months of reflux medication and sent me on my way. I was skeptical about this whole process because reflux can be caused by low stomach acid as well as high, and I didn’t like being put on a medication to lower it when we didn’t know what was causing the reflux in the first place. At my follow up (many months later, postponed because of COVID), the inflammation was gone, but my pain wasn’t. Because the inflammation had healed, it looked like the doctor had made the right choice, but since the pain hadn’t improved, he referred me to a gastroenterologist. I wasn’t looking forward to seeing another specialist, who probably wouldn’t find anything, so I put off making the appointment.

Then it was mid-September, and it was time for me to start teaching my groups through distance learning. I noticed a dramatic increase in my pain. Had my reflux flared? Is it strep again? It’s nearly unbearable. Anyone else get that thing where when the pain is bad enough, a headache and a touch of nausea show up, so you just feel downright ill? Sometimes I do actually vomit, as with the neck tension. I made the appointment with the GI doctor (months away, of course).

What’s funny to me is that I feel like I’m handling distance learning so much better this time around. I’ve always been an anxious person, and there’s oh-so-much to be anxious about right now, but I thought I was taking everything in stride, so to speak.

Last weekend, I read up on LPR again and cut out spicy food and acidic food, citrus, tomato products, garlic, fatty foods, chocolate. As a vegan with celiac disease who loves coconut curry and salsa, I have little enjoyment in what is left. I sleep propped up. I try over-the-counter antacids. I attempt to implement a more regular meditation practice, because, of course, along with cutting out everything with flavor, reflux sufferers should reduce stress.

Today will be the seventh consecutive day I’ve meditated, which is new for me. Thursday and Friday I managed to meditate before work, after work, and before bed. I’ve certainly never meditated more than once a day before. I’m fortunate to have the time and space to do this, and it might be exactly what I need. With yoga, pilates, meditation, and every other de-stress/mindful practice, it’s so hard for me to really believe in “the power of the breath.” I mean, it sounds pretty woo-woo. We breathe all the time. Does taking mindful breaths really change things all that much?

I feel like I already have compassion for myself and my body, but doing all these compassionate body scans and “affectionate breathing” has been really interesting. It was a bit of a revelation to have a moment of understanding that I am not my body. I myself am separate from it. It is the vessel that I have, but it isn’t me. Of course, the reverse is also simultaneously true. Existence is complicated.

One body scan starts with the left toes. By the time we reached my left hip, I was crying. Another started with the crown of the head, and by the time we reached the forehead, I was crying. I think we all need to lie down in the quiet darkness, take a deep breath, and listen to a gentle, calm, compassionate person guide us through our own bodies. We, all of us, need gentle, calm compassion.

I first tried mindful breathing about thirteen years ago during the relaxation section of Yoga for the Rest of Us. It’s taken me until now, with more regular practice, to actually feel the physical and mental effects, and now only sometimes. So, if you try it and think it isn’t for you, try it again.

I thought I’d leave a few of the meditations I’ve really come to enjoy down below. Some have a more professional quality than others. All have helped me.