I recently had my neurology follow-up with Dr. X to discuss my cervical spine and brain MRIs.
She said my brain looks good and my labs look good. She said the mild disc bulges in my neck are indeed very mild and shouldn’t be causing pain. She does not want to order steroid injections for something so mild, and agree, even though I’ve had constant neck pain since June of 2016. Then she did a quick reassessment of my strength and reflexes and said they are the same (no surprise there; it’s been three months).
The small lesion in my right brain could have been from any number of things (perhaps even CP), and we don’t have any earlier images to compare it to. It does not explain my burning forearms.
The only thing Dr. X thought it might be is small fiber neuropathy caused by celiac disease. The treatment is to manage the celiac disease through diet, which I’ve obviously already been trying to do since my diagnosis almost five years ago. I could have a skin biopsy done to confirm, but it wouldn’t change treatment, which is only symptom management. I could try gabapentin (didn’t help), physical therapy (didn’t help), or duloxetine (nope; gelatin). I could try over-the-counter lidocaine cream. Okay, sure. It’s a little frustrating to be given options I’ve already tried, but I guess I don’t expect my doctor to actually be familiar with my history.
Johns Hopkins describes the symptoms of small fiber neuropathy as “pins-and-needles, pricks, tingling and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations.” It doesn’t really sound like what I’m feeling except the burning. It’s more like a deep, painful ache that can feel sharp. Though I have had burning toes as well, since 2014, and small fiber neuropathy often begins in the feet and works its way up.
Whatever it is, it doesn’t seem like there’s a whole lot more to do. No surprise there.
Here’s the funny part. Dr. X asked to see me walk. I do not enjoy providing a walking sample in an exam room. There’s about three steps to the door from where I was sitting. But I got up and did it anyway, no trekking poles. As soon as I took two steps, she started saying, “Slow down.” Now, I cannot slow down, as that would take control that I do not possess. I thought she was saying slow down because I was already at the end of the room and she hadn’t had time to really see my gait. But then she said, “Be careful,” and she was up from her stool and taking my arm because she did not want me to fall. Now, English is not her first language, and I think culturally, we’ve got some big differences as well. But she’s a neurologist. The majority of patients in and out of that office were using some kind of mobility aid. Isn’t she familiar with CP gait patterns? Oy.
When it was time for me to go, I got my poles and stood up, and there she was, trying to take my arm and telling me to be careful. And again, as I went through the door, telling me to be careful. Obviously I understand that this reaction is coming from a place of care. But. I am forty-two years old, and I have come to this exam room on my own using poles. Therefore, the other adult in the room should infer that I know how to handle myself to get safely back to the waiting area, even if I had a wheelchair and/or caregiver out there waiting for me! And she should also know that the words “be careful” have never, ever actually helped anyone, but that they do, in fact, convey loads of condescension. Goodness, thank you, doctor! That’s what I’ve been missing these forty-two years. I have never realized before that I should move with care. No one told me! But now that I know, I shall handle living in my own body much better. (I didn’t say any of that, of course.)
In other news, I’ve now had two osteopathic manipulation appointments at my local hospital. I got this referral by having an office visit with a new doctor when my regular PCP was out. It’s so nice when doctors try to help you without you asking for it. The appointment had nothing to do with CP or chronic pain, but I did mention those things. This new doctor gave me some new options, ones that I hadn’t known existed. My PCP has been my doctor since 2012 and has seen me for every new chronic pain that has come up, but she’s never suggested anything like this. As far as insurance coverage, osteopathic manipulation counts as a regular office visit and is part of my allotted physical therapy visits, unlike massage therapy, for example, which is not covered. In addition, I get a 40 minute appointment, which means at least 30 minutes of it is actually treatment, unlike with a PT session, which is 30 minutes total.
The appointment is at the hospital, not at a physical therapy office, but the table inside the exam room is more like a PT table, with a real sheet over the crunchy paper strip.
I lie on my back and get mushed and pushed and pulled on. And I really like it. In the first session, the doctor told me the right side of my ribcage was compressed and that I should lie down flat with my right arm bent over my head to stretch it out. And I should also let my right leg relax outward when I’m lying down. Two positions to work on while lying down? That I can do. I was pretty sore afterward, but other than that, I didn’t notice any difference.
During the second session, she worked a lot on my right hip, because that’s where a lot of my pain is. Then when she was checking my ribs she lifted my arm and said, “We’ve got to work on your forearms! When they’re tight, they pull your shoulders forward and affect your posture.” Just by touching my arm, she could feel an issue. Yes, they’re tight. Yes, I do try to stretch them. I’ve tried massage and moist heat, and taping and rolling. Nothing I do seems to have any effect. Just that first PT in June of 2020 succeeded in helping. The second PT did the same things, but it didn’t help, and neither did work with a myofascial release therapist. Hence the last three years of trying to figure out what’s going on with my forearms. Is the burning just my nervous system overreacting to extreme tightness? If so, why don’t the muscles let go even a little with stretching and/or other professional intervention? Maybe it’s not small fiber neuropathy at all.
What if I got a full body, deep-tissue massage under general anesthesia? Doesn’t that sound like a fun experiment for my nervous system? I think it sounds like an excellent idea.
On May 12th, I went to my new physical therapy office. I had decided to keep the referral even though the injections hadn’t done anything for my chronic pain.
My new physical therapist is a quiet woman with an Eastern European accent who calls everyone sweetheart. Very different from anyone I’ve had before. She’s also a little blunt, which is a little funny. She said she’s worked with several people with CP almost exactly like mine and they all improved. “You need to stretch. You need to get stronger.” To the student PT, “Look, she has no range of motion. This is neutral and it’s tight.” On and on. Explaining me to myself. I mean, I know there’s a possibility of improvement, and I know there comes a point when there’s not. At least she demonstrated a sound grasp of my mechanics.
What I really liked was at the end. They’re very into modalities at this place. I got to have e-stim (TENS unit) put on my low back and right glute, with a giant ice pack over the whole area, a pillow between my knees, lights off and the door closed, and a little bell right next to me in case I needed anything. I assumed I was in a room rather than out in the main area (here they didn’t even have curtains between the tables) because I was a new patient, and I was grateful. I don’t think it helped at all, but it was nice just the same.
The therapist had given me similar if not identical exercises and stretches as everyone else, no surprise there. She tried to give me ones that I could do on the bed, so I wouldn’t have to get up and down from the floor, which I appreciated. Then it’s that whole, “Do these several times throughout the day. It’s just a part of your life now.” Or break up one set of ten throughout the day until you’re stronger. I have absolutely no reason not to incorporate these things into my life, and yet I don’t successfully do it. Still, I do try some days. Against my better judgment, a day or two after that appointment, I got on my hands and knees on my bed and tried to lift a leg out behind me. I knew this was too hard, even though I had done it on the table under the PT’s supervision. I knew the bed wasn’t an appropriate surface to do something that was on the edge of my ability. Even though I tried to keep my core tight, my back bowed and protested sharply. And as seems to be the way with my body these days, I acquired an additional back injury that hasn’t healed a month later. It’s really made functioning so much more painful and disheartening. So there’s that.
Immediately following that first PT appointment, I had the allergist appointment. I brought a typed list of my throat history and all the mold testing data. I explained that I was looking for some confirmation of mold issues before we tore our house apart. I knew there wasn’t “a mold test.” I brought up my tTG numbers and the possibility of additional autoimmune diseases. I had even found one that fit so many of my symptoms–including a sore throat. He chuckled (nicely) and said no, I don’t have that. “People with that are really sick.” But he ordered the test for it anyway. I don’t have it. He also ordered a test to see if I’m allergic to mold. It was a standard allergy panel that included five common molds from my local area (none of which were the molds in my house). I am not allergic to cat dander or pollen or any of the dozen things on that panel. But he can do skin tests anyway, if I want. I do not. He said I should get the mold in my house cleaned up anyway, because mold isn’t good for people.
At my second PT appointment two weeks later, I told her about my back and we modified some things. Then she told her student/assistant to get the cupping ready. I wasn’t super excited about that, because I’d had it done a couple times when I had acupuncture and I do not enjoy it. However, they did a very mild version, where they lubricate the cup and move it over the skin–no leaving it there to create baseball-sized marks. I also got to have the e-stim and ice pack in a dark room again. Three modalities in one appointment–ooo, nice. Did they help with the pain? No. Whatever else we did, I think I felt a little looser at the front of my hips, which is always nice and doesn’t last long, no matter how much I try to maintain it.
June 9th, I finally, finally had the appointment with my new primary care doctor–the appointment I made back in March just so I could get into the UC Davis system for my sports medicine referral. I was looking forward to a new doctor, new perspective, someone who might look over everything again and put the pieces together in a new way. Plus, she’s certified in family medicine and psychiatry, and I’m really appreciative of that combo. I was hoping I’d get a referral to rheumatology out of it.
My new doctor had a resident with her, who took over all the typing/computer stuff, so my doctor was actually looking at me and listening to me rather than typing, and I really like that. I had typed up (on a single sheet) my top five issues and their symptoms, plus additional symptoms that may or may not shed light on anything. Yes, I’m someone with five major things, and yet I am not a hypochondriac. I put cerebral palsy as one, “mold issues” as another, etc. The thing about being a patient, though, and not a doctor, is that I don’t know for certain what the relevant information is for each column, or what I’m leaving out.
After talking to me and looking over the sheet, the doctor asked what I wanted to focus on, and I said my sore throat and burning forearms, because those are the ones that don’t make sense. Because my forearms burn and at the beginning I had lost grip strength and I have constant neck pain, she thinks it may be a nerve issue. Get this, she recommends I get the nerve conduction study/EMG on both arms! Ack. And they proceeded to try to add it to the one for my legs coming up at the end of the month. Let’s just torture all the limbs, shall we? I was a little stunned that she already recommended this kind of procedure. (In my mind, I’m connecting it to mold because it started literally when we began sheltering in place. But obviously, if you don’t go with mold, there’s a different cause.) And I realized, after the initial appointment for my arms with my prior primary care doctor, and the PT that helped with grip strength but didn’t stop the burning, I haven’t followed up. So maybe I have a pinched nerve in my neck.
We discussed my chronic pain(s), and everything I’ve tried that hasn’t worked. She said, “I can think of five medications right now that might help you. So let’s start with the one that has the potential to do the most good for the most issues.” So now I’m taking gabapentin. I was offered this once before, years ago, and decided not to take it. This doctor talked me through it though: “We start you on the lowest dose and if you tolerate it well, gradually increase it. If you have side effects, you’ll stop taking it and the side effects will stop. It’s a relatively low-risk thing to try.” Sounds reasonable. Ironically, the most common side effects are tiredness and feeling unstable/dizzy. Great, because it’s not as if I’m not already exhausted and unstable.
We also talked about my throat, all the treatment I’ve been through, the tTG numbers. They looked at the pictures I brought of my upper endoscopy. I conveyed my frustration over the two ENTs treating me for two very common conditions (reflux and general inflammation) and then throwing up their hands. She wants to send me to gastroenterology. I only saw a GI doctor for the endoscopy and the follow up on video. So being sent to a GI sounds fine. But I was disappointed that she didn’t feel rheumatology was warranted.
She did notice that I put positive ANA under the autoimmune column on my sheet and asked what other tests that integrative medicine doctor had ordered. I didn’t remember, but directed them to June 2018 when I had loads of testing and was diagnosed with celiac.
I have looked over these tests many times over the years, and googled each flagged result. I remember mentioning CREST to the GI doctor when we were about to do the upper endoscopy in October 2020. “CREST? You have CREST? You should see a rheumatologist,” he said. “Oh,” I said. “Well, I have Raynaud’s.” I didn’t know if I really had CREST, but I remembered that the R was for Raynaud’s and that I have that (we assume).
My new doctor and her resident scrolled through my labs from 2018 and talked to each other, and I heard my doctor say, “Oh! You can go to rheumatology.” That integrative medicine doctor had ordered the tests in 2018 that my new doctor would have ordered before confirming the need for a rheumatologist. “You have a high centromere antibody. Has anyone talked to you about that?”
The answer is no. When I got home, I read back through the notes on the test results from the integrative doctor in 2018. I was a new patient, so she’d ordered a full work up, and there were lots of results to go through. She never said anything about that one. I probably figured since I had the R in CREST and that Raynaud’s is not a big deal, that there wasn’t anything that needed to be done, and I never asked anyone about it directly. Though clearly I’d looked it up at some point, and told the GI doctor I had CREST. Here’s what it says right on the test result from Sutter Hospital:
Centromere antibody is virtually diagnostic for the scleroderma variant known
as CREST (calcinosis, Raynaud’s phenomenon, esophageal dysmotility,
sclerodactyly, and telangiectasia).
This doctor asked if I had any skin concerns and studied my hands. No doctor has ever inspected my hands that way before. Ooh, she’s good, I thought. Really examining the patient and looking for signs, rather than just sitting at the computer. After I came home and looked up CREST again, I realized she was looking for symptoms of sclerosis. Notice that the E in CREST has to do with the esophagus. So far, I haven’t had difficulty swallowing, and nothing mentions chronic sore throat, so we’ll see if there’s anything there. Also, apparently now it’s “formerly CREST” and is officially called “limited systemic sclerosis.” It’s rare and doesn’t sound great because it can mess with your organs and all, so…
Since seeing that integrative medicine doctor in 2018, I’ve seen my PCP, two ENTs, a GI doctor, a functional medicine MD, and an allergist. Seven doctors. It seems as though the original doctor who ordered the test dropped the ball, and no one picked it up. I don’t know if or how things would have been different if I’d gotten a rheumatologist referral four years ago. No use in thinking about that.
As I was writing this, I received a notification that my rheumatologist referral had been processed and I could call and make an appointment. So I did. There’s one available tomorrow at 11am. Or in September. So I took the one for tomorrow.
Now it’s tomorrow, and it’s 10pm. We left the house at 10:15am to arrive at 10:45 for our 11am appointment. I filled out the pages of new-patient forms (they were not looked at). My doctor didn’t arrive until almost noon. He gave me an elbow bump and apologized multiple times for the wait. He was with us for about an hour and it felt very thorough. Went through all the symptoms and pains, even ones that don’t seem related to each other. (This rheumatologist is also an orthopedic surgeon!)
We talked a lot about my burning forearms and burning toes. He looked at my toes. He looked at my capillary nail folds on my hands. A dot of clear soap at the base of each nail, a light, and a little magnifying glass. Fun. This was to check for sclerosis. He looked at my scalp and at my throat. He looked through my previous labs.
He came to a few conclusions: He doesn’t think I have Raynaud’s because there’s no color change. The burning toes and the forearms seem like neuropathy. Even with the positive ANA and the centromere antibody thing, I have no signs of systemic sclerosis. Well, I have two mild ones, but no skin changes. At this time, he sees no active autoimmune disease. I do have a possibility of developing lupus or sclerosis, so I will see him every six months for a bit. He doesn’t know why I have a sore throat. And he doesn’t know why my tTG has gone way back up. He even said something like, “Well, this probably wasn’t a very satisfying visit. But it’s good to know you don’t have another autoimmune disease.”
So there we are. He ordered a few labs, mostly because I’m new and don’t have any labs in UCD’s system. And he referred me to a neurologist. That’s right, I got another referral. Maybe the next one will be able to help me.
I did my labs in the same building. I had to do a urinalysis, and I have to say–I did my best one yet. It’s difficult to do a clean catch when you’ve got to hold yourself up in a kinda squat with one hand and manage the cup properly with the other. I didn’t even get any pee on the outside of the cup! Go me.
I’m not super hopeful about the new referral. But I’ve never been to a neurologist (well, at least not that I remember), so it should be an interesting experience.
It does feel like referral after referral, getting passed around, no one knowing how to help me. Such is life with chronic issues. I’ll keep trying to calm my central nervous system and try not to think about the EMG coming up at the end of the month.
April has been so busy and so much has not yet been documented. This blog comes to you in several parts. First, let’s back up.
ExoSym Costs
My ExoSyms were paid off in February. For two Exos with two knee sections, the grand total was $21,408.00 USD. All the patient’s responsibility (no insurance), we were told. We paid half up front ($10,704). This half was for one Exo and one knee section, two separate accounts (though I didn’t realize that at the time).
At the clinic, when we handed over the first half, we (read: my dad) asked if the clinic would bill insurance for the knee sections, just to see. They did, and our insurance did cover those. So the portion of our half-up-front payment that was meant for one knee section was applied to the second Exo.
We opted for the nine-month “in-house payment plan” to pay the rest in installments. There is nothing official about the in-house payment plan, however, so I still received a general Hanger Clinic bill for the remaining amount with no mention of installments. The bill itself was very confusing to me, as it was only for the two Exos ($18,000), and stated that we’d paid $9,000, with no explanation regarding the knee sections (because of the different accounts, see?). Later, I tried to match up my insurance statement with my Hanger bill and make various seemingly random figures have meaning. The bottom line is, rather than paying another $10,704 over nine months, I paid $7,842. And by “I paid,” I mean that my parents then insisted on reimbursing me. Thank you, parents.
I am vaccinated!
As someone who works in education, I received my first dose of the COVID-19 vaccine on February 19th. My second was March 19th. I had the Moderna, and did not have any reaction other than a very sore arm. While I waited for the dreaded chills, etc. that did not come, I began to wonder whether my immune system is terrible or whether the vaccine was faulty. It turns out that a large portion of the population doesn’t have a strong reaction and everything is most likely fine.
ExoSym Practice
I have put on my Exosyms and completed a short practice session outside with back brace and poles every day since March 18th. That’s 44 consecutive days counting today. I am both proud of that and surprised by it. Some days feel good, and some days are harder. Usually, I need to recover from making it from my front door out to the sidewalk. That sounds silly, but there’s a section of incline in our path, and inclines are really hard with no ankle flexion. Some days, I can reach the sidewalk and keep walking. Do my three up-and-backs. I like to stop in between though, check my posture (using my shadow since I don’t have a mirror), do a moment of mountain pose, practice standing without weight on my poles. Some days it’s a chore, and some days it’s an exercise in curiosity. Can I feel my glutes today? Is my pelvis under me? Am I able to speed up? Reduce the strain on my forearms? Does it feel better if I try it this way or that?
April 5th
One morning my usual stretch of sidewalk was not available, so I went out to the bike path instead. In the early days, I walked this bike path toward my PT office, with the goal of eventually being able to make it all the way there and then do PT in the Exos. (Ha!) It has been many months since I’ve worn Exos on this path. The bumpy blacktop undulates up and over tree roots. Navigating such an uneven surface creates a “wobbly colt” response in me. I think it’s the lack of ankle flexion again, and the unpredictability. My body just doesn’t know what it’s doing anymore. I have been feeling so much stronger that I didn’t expect that wobbly feeling again, but there it was. It wasn’t as bad as before, but I was still a little surprised and disappointed. Not much I can do about it, though. Except keep practicing, of course.
It’s hard to tell, but the bike path on the right is a lot bumpier than the sidewalk on the left.
Back Pain
The reason I stopped wearing my Exos back in November was the back injury (from picking up something off the floor weirdly, Exos on) that turned into constant pain. An x-ray revealed mild arthritis, but that was obviously there before. I did not feel safe walking, and I knew I couldn’t add the weight and bulk of Exos to that. Bought a back support in March and have worn it almost every waking moment since. It’s great; I actually feel supported in it, and that’s a good feeling. However. When I take it off at night, I’m in more pain than I was before I started wearing it. I was afraid to put my Exos on because they would make my back hurt more. That has turned out to be true. My physical therapist figures it’s because I’m more active and suggests ice. Great. The way I roll over in bed is not helping (rolling over for this cerebral palsian is kinda twisty and archy). I tried sleeping in the brace once. It may have helped some, but I don’t like the idea of wearing it twenty-four hours a day.
I Hiked Again
On April 10th, my husband and I went to Reinhardt Redwood Regional Park in the East Bay. It was a busy spot, but a lovely day. Cool in the shade and warm in the sun. Our path was rockier than was enjoyable for good stretches of time, but mostly flat, and we did see more redwoods. I completed one mile, from our car to another lot. Then my husband went back to the car and picked me up.
Rocky, see?
April 19th
Side by side comparison
Myofascial Release Therapy
As soon as I knew the date of my second dose, I calculated the days until full efficacy and scheduled my first-ever myofascial release session for soon after. It turns out my neighbor is a physical therapist who is certified in MFR techniques, and she’s worked with many people who have cerebral palsy. I’m choosing to believe that the fact that we’ve lived next door to each other for almost eight years and I didn’t know this until I saw a flyer confirms only that I’m an introvert and not that I’m truly anti-social.
Here’s why fascia is important, courtesy of Johns Hopkins:
Fascia is a thin casing of connective tissue that surrounds and holds every organ, blood vessel, bone, nerve fiber, and muscle in place. The tissue does more than provide internal structure; fascia has nerves that make it almost as sensitive as skin. When stressed, it tightens up.
Although fascia looks like one sheet of tissue, it’s actually made up of multiple layers with liquid in between called hyaluronan. It’s designed to stretch as you move. But there are certain things that cause fascia to thicken and become sticky. When it dries up and tightens around muscles, it can limit mobility and cause painful knots to develop.
I’m pretty sure my fascia is a thickened, dried up and/or sticky, tightened mess.
I’ve had three sessions so far. My neighbor, A, doesn’t use any of those metal scraping tools that break capillaries. The release technique that she uses is gentle, skin-to-skin, sustained manual pressure. She’ll find a spot that’s tender and stay on it for five minutes or more. Five minutes. Any kind of stretching or trigger point work I’ve had so far has stayed on one place for 30, 60, or 90 seconds. She stays on a knot without forcing it, waiting to feel it release; the fascia and muscles tell her what to do and where to go next.
She’s worked on my hips, psoas, quads, and arms. Is it weird to lie in the semi-darkness while someone sits with you, hands not moving but simply firmly on a muscle for minutes and minutes? No. It’s rather nice. I am busy deep breathing, trying to relax and stay that way, and she is busy concentrating on the fascia.
The muscles of my lower body don’t want to relax. If pressure is applied, they tend to contract against that pressure in response (without my consent). During the session, sometimes I feel a muscle start to let go and then a spasm will sweep through. I hesitated to use the word spasm because I tend to think of those as painful, and this isn’t. But Merriam-Webster tells me that a spasm is “an involuntary muscular contraction,” and that is exactly what happens. The muscles do this: “Relax. Relax. Relaaax. Rela–CONTRACT!” It’s like they can’t handle it, can’t let themselves unclench. Like we have to trick them into thinking it’s safe to let go.
Sometimes I’m able to hold a contraction at bay. I can feel it wanting to take over against the gentle-firm pressure. It’s such an odd feeling. Sometimes I’ll try to stave it off, and just one leg will clench instead of both.
So my neighbor sits with me and my fascia and my contracting muscles, and she doesn’t force anything. She exists with me and my body in that time and that space and she accepts what is and coaxes small changes. And that is worth a lot.
She is also very good at trying to address my specific trouble spots. I would really like to regain my full grip strength and not have so much pain in my thumb and forearm. (I’ve been attributing this to pole use, because what else?)
Last June, I went to my first hand therapy appointment and that OT massaged the underside of my forearm and taped my thumb/wrist/forearm. I didn’t feel any different and went home without expectation of any improvement. Soon after, my neck started to tingle, and my extreme neck and shoulder tension was vastly reduced, for about a week. It felt like a near-miracle. I told A this story, and she’s worked on my forearm and taped my wrist twice, with no changes. Sigh. I think my brain must just refuse to relinquish the feedback loop: “You tricked me into relaxing once, but I know your ways now and I shall not surrender! Mwah ha ha!”
Does Anyone Know What Day It Is?
During the month of April I was busy every single weekend. Just so we’re clear, even without a pandemic, my preferred weekend activity is not having one. Along with my part-time job as a reading paraeducator, I’m also a freelance copyeditor. Sometimes, I actually get an editing job. Last summer, I became the editor for a newsletter that comes out three times a year. I’m not yet clear on its publication schedule, so when I get an email with a dozen articles attached that says, “It’s time for another issue,” I’m surprised. That happened, and then a friend of a friend contacted me to edit a dissertation, with a week turnaround time. Yikes! I said yes and then I worked before work and after work and through a weekend to finish it early and go back to the newsletter.
What’s more, my husband has recently gone back to his office two days a week instead of just on Wednesdays. So every Tuesday when he’s not at home, it feels like Wednesday. With changes at my day job, tutoring, PT, myofascial release, achieving daily ExoSym practice, TWO editing projects, AND a husband who keeps leaving the house, well, I’ve been a little out of it.
The Glute Evolution
In November 2019, I was introduced to my gluteus medius when I tried out the ExoSym test devices. In August 2020, I started to feel them really come alive. Now, I can feel my glutes working more than ever before.
My physical therapist continues to be impressed by my progress. At my last session on April 14th, he did some pretty “aggressive” stretching. When I got up from the table, I felt a bit wet-noodly. Like I really might need to sit down. That’s never happened before. But I couldn’t sit down because I needed to walk home and edit.
The combination of the stretching, the yoga, and maybe even the myofascial release already–it’s all doing something. I feel like the bit more range of motion I’ve achieved in my hips (and the added stability with the back brace) is giving me an actual stride rather than an always-bent-at-hip-and-knee clomp, clomp, clomp.
I’m using my glutes, you see. I can feel them contracting together. My backside and I have a whole new relationship. When I’m standing at the kitchen counter washing dishes, chopping vegetables, pouring something–anything that uses two hands–I am leaning my belly into the counter to hold myself up. This posture is obviously not great for several reasons. Now, I remind myself that my body can hold itself up without the counter’s assistance. I stand there and I chop up carrots and I feel my muscles holding me up. I remind myself not to cheat by resting my wrist against the counter. It takes a lot of concentration and effort to stand up tall and not cut off the tip of my finger, so it’s not an all-the-time thing yet.
But the weirdest thing is this: I didn’t realize the muscles weren’t working before. I’ve tried to articulate it previously, and I’ll do it again. My PT puts me in a modified plank and tells me to squeeze my buns together. I do, and I feel it. I’m doing the thing. But it’s like the volume was on low and I didn’t know it.
Those of you who have full use of your hands: it’s like if someone told you to lift your hands, palms down. On a continuum, A is to do it with your fingers relaxed. Z is to do it with energy through your fingers, stretched out taut. If the goal is to do Z, you do your darndest and still only make it to about G, but you think you’re at an N or an M. You have no idea what an N or M feels like, let alone Z. It’s inconceivable that Z even exists.
I know my glutes are still at the beginning of the alphabet, but it’s astonishing to discover the world of D, E, and F. I was doing yoga the other day, in my modified warrior one pose (holding on to the back of a chair). The muscles down the back of my bent leg were firing away. And I said, “Oh my god, my glutes!” so loud that my husband wondered if I was okay. Yes, just amazed.
Warrior One
The other morning I was doing my PT on the living room rug (as I have done for the last 44 days!). I was doing my side leg lifts with bent knees. These are hard. My glutes immediately start burning very strongly, and it takes a while for the burn to dissipate. In the beginning I was supposed to aim to get about a fist of space between my knees, and that was extremely challenging. It felt like an invisible thick rubber band was around my knees and I was fighting against it.
I’ve realized lately that the burn isn’t so strong, nor so immediate. And as I’ve said, my glutes are actually squeezing together. I know I’ve been getting better at these.
So I lift my leg, and it just keeps going up. I’m shocked. I stare at the space between my knees, space that I’m creating (and maintaining!) under my own power. And this is my left leg (the weaker one). I had to call my husband over to come see. My hips really are loosening up. And maybe there really is something to tight and dried up fascia limiting mobility. I was lifting my leg up higher than ever before (at least in the last two or three decades) and it felt easy enough that I didn’t realize I was doing it. Like it kept going up all by itself, without strain. Do you know how weird that feels?
My glutes are evolving, but I don’t know if my core is. All this ExoSym work is supposed to come from the glutes and the core. So far, I’m not great at coordinating all this within a step cycle, but I do try to “squish” with each step. I don’t know if my core is getting stronger but it’s just not as obvious because I’ve always had a little more control over/awareness of my core than my glutes. Or if I still have a 2019 core instead of a 2021 core.
There is still so much work to be done, so much tiredness, and a constant ebb and flow of pain from various sources. But continue to work I shall, with curiosity and gratitude.
And just so that last bit doesn’t sound too eye-rolly, know that there will be a fair bit of moaning and groaning, too.
When I arrived at my physical therapy appointment on March 31st, I had completed a short practice session with my back support and ExoSyms every day for two weeks straight. Wearing my ExoSyms for any amount of time on fourteen consecutive days was definitely a record.
When my PT called me back and I walked toward him (with back support and poles), he remarked that I was walking much straighter, my stride longer. Happy that he could see it, I explained that I could feel a difference after getting the front of the hip stretched, and that I’d been trying to maintain the looseness and incorporate the bit of longer stride into my regular gait. I also told him that I went hiking. And that I can feel my hamstrings more. One night I was sitting in bed and they were aching and seriously buzzing. Like, “Oh, hello, hamstrings. Where have you been? How nice of you to show up after forty years.”
He did the regular stretches and had me get up and walk again, with poles. “Wow,” he said. “This is a watershed moment.” Then he reassigned an exercise I’d been given and abandoned last year and enthusiastically extended my care plan until June. (It was up in March. You have to show progress or something in order to “earn” more sessions. With cerebral palsy, that is ridiculous. That’s our healthcare system for you.)
I’ve been doing my Yoga for the Rest of Us, and I think I’m actually improving. This reads as though it’s a natural outcome. I’m doing something and getting better at it. But that hasn’t felt true for me before.
I always hear how much stronger and flexible people become once they get into a yoga practice. How much better they feel. That’s the whole point, right? Those are the things that yoga is supposed to do for you. Not me. Somewhere around 2007, I remember using this DVD on a regular basis, but I never felt that the poses were becoming better, or that I was getting much of anything out of it at all. I figured that’s just par for the CP course.
But getting a good stretch at physical therapy, feeling that openness at the front of the hip, feeling that longer stride, and then doing yoga while I still feel it, it’s really helping it stay. Recently I was doing my modified sun salutations, with the seat of a chair acting as a raised floor, and I was in that lunge where you’re supposed to have your back straight and look up. Instead of, you know, being hunched over the chair trying to sorta do a lunge. And I changed one thing, I’m not even sure what, and felt this oh moment. “Oh. I think that’s what it’s supposed to feel like. I think I actually did it that time.” I DO feel stronger. My hips DO feel more flexible. The poses ARE getting better. So, when I say I’ve been doing yoga and I think I’m actually improving, it’s really more like, “I have been doing yoga and I’m actually IMPROVING!?@$#!” It’s really weird. And awesome.
When I do my PT at home, and I tighten my core (on back, knees bent), sometimes my glutes and hamstrings join in all by themselves. More on the right, but sometimes even the left side does it. It was almost startling the first time I felt it happen. Like, woah, what’s going on in there? When I’m walking with my back brace and poles, and I really succeed at engaging the core and getting my pelvis under me, I can feel my glutes and hamstrings working. I can feel my shoulders lift up and back. For a few steps at a time, it feels so different and so much better. To be both upright and moving forward at once. It’s so functional.
What Happened to Your Legs? 