Tag: CP

Danielle Visits Physical Medicine & Rehabilitation (PMR)

danielleshanti

On April 4th, I had my first ever PMR appointment. Quick recap: Once upon a time, I made an appointment for myself at the adult clinic at UCLA Center for Cerebral Palsy, just to see what it was like, and if they had a more knowledgeable perspective than my primary care doctor. The CP clinic referred me to UC Davis sports medicine. Sports medicine doc tried a couple injections and when those did nothing referred me to pain management. Pain management tried a couple medications, and when those did nothing, referred me to PMR. I’m not angry or surprised by any of this (mostly); I’m just pursuing various care options as an adult with CP who is experiencing (expected but not able to be fully understood until it happens to you) decline in function and increase in pain.

The excellent thing about the PMR appointment was that the experienced doctor, Dr. S, came in with the intern/fellow/resident/whoever the young doc, Dr. W, was and the medical student, rather than the young’uns doing everything and then reporting to Dr. S outside the room before they all came back to me. It’s much better having the experienced one there from the get-go. It feels more productive having them all there teaching/learning/discussing in the room. It also just feels better to the patient when there’s a team of people who are trying to help you and taking you seriously and playing detective. They asked about my celiac disease and my throat pain and my arm pain in addition to CP stuff because they were trying to rule out other causes of my fatigue and pain. They could see the EMGs, neurologist notes, etc. 

When they transitioned to the CP side of things, they watched me walk up and down the hallway with and without poles. Most doctors don’t do this, and I think it’s weird. If a sitting-down patient tells you they have CP and various chronic pains, don’t you think you should ask that patient to walk more than zero to four steps? I felt it was a thorough appointment, that young Dr. W was on top of things as far as actually looking into my history, and that the medical student probably learned a lot. Dr. S said that the labral tear/impingement probably isn’t causing my pain, and that my hip issues on the right are most likely coming from the iliopsoas lengthening procedure done in 1989: “​​The pain could be due to the prior history of iliopsoas release as they have to cut part of the tendon to elongate it. So the pain could be coming from the tendon or myotendinous junction. The restricted range of motion in the hips with tonic tension on that structure when standing could be increasing the pain. Unfortunately, there is not a whole lot that can be done if that is the source of hip pain.”

As far as the pain and arthritis in my lumbar spine, my pelvis is tilted in a way that accentuates the lumbar curve, adding more pressure there, and my gait has always exacerbated the area. The doctors were rather taken aback by the pain management doctor’s offered options of a baclofen pump and nerve ablation (which I had already decided against). Dr. S’s opinion is that if the tizanidine (muscle relaxant) did nothing, then medicating for spasticity (baclofen) isn’t going to help me. For doctors who understand the range of CP, my spasticity is not extreme, and relaxants would only increase my fatigue. I could pursue an injection in my back. (Young Dr. W cut in with this, and Dr. S didn’t disagree.) The overall suggestion Dr. S had for my back was to “modify activity,” meaning “do things in a way that hurts less.” I probably could have come away with a physical therapy referral, but talked about how much PT I’ve already had and what I’d been assigned in my home programs. Water therapy is a popular idea, since being on land hurts, but it’s not readily available around here. 

I asked Dr. S how to work on my tight hip flexors in a way that doesn’t aggravate the rest of what’s going on in my hip. He said, “If it hurts, don’t do it.” I felt relief and validation then. The tough truth is, I’m in the least amount of pain when I am least active. When I move my body, the hip and the back flare up because the way I move hurts those places. Of course I know that exercise is the best way to keep my body and my heart and my brain healthy, so I’m not going to become completely sedentary. It’s just good to hear that, yes, these exercises that have been given to over and over may be causing damage and that, yes, it really is sometimes damn near impossible to exercise one area without hurting another. 

When the pop in my hip led to a labral tear/hip impingement diagnosis, and more pain, I held to this idea that this new condition, and new pain, could be helped. But these doctors have said that my pain isn’t coming from the tear and impingement. When I leaned over a bit sideways to pick up something off the floor and hurt my back more than I ever had, I held to this idea that this new condition, and new pain, could be helped. But these doctors have said that I have facet arthropathy and age-related degeneration, and that the pain isn’t from an acute injury. I don’t know why my body hasn’t returned to its prior state, the way it was before these identifiable incidents. It’s like the new pains alerted my brain to these areas in a new way, and I haven’t been able to calm down my hypersensitive nervous system to the previous levels of pain. If true, this is something I could use The Gupta Program for. I have fallen off the Gupta wagon, however–except for meditation–and it’s exhausting to think about getting back to it when seven months of trying did not help my pain. (It’s “a six month program,” and some people use it for several years before they start feeling better. I imagine the ones that try it for years and don’t feel better aren’t writing about it in the online group forum.)   

At least I can accept now that this hip and back pain is here to stay and that it’s up to me to manage it the best I can. Acceptance and surrender, right? Just like Gupta says. Except that complete acceptance remains elusive. I still feel that it would be nice if OTC medication, heat, ice, etc. actually helped. I just want a little help. Sometimes I feel that if I could have a minute or two of true relief, it would help me be able to handle it the rest of the time.     

When I returned home from my PMR appointment, I signed in to a free UC Davis Health webinar on “pain and wellness.” Because why not?

As I watched this webinar and listened to an expert promote the benefits of (get ready to be shocked!) meditation, healthy diet, and regular exercise…I just felt so exhausted. He is talking to people who, most likely, were once able-bodied. The amount of activity that’s advised–cardio, strength training– I’m just so tired. I already understand the benefits of exercise and vegetables. Everyone does, but that doesn’t mean we follow through. Studies show meditation is an effective method for pain relief. I know this. It’s just not simple and straightforward. It’s not as if I meditate and feel better, end of story.

Healthy diet, exercise, meditation. I DID DO these things, to the extent of my ability, for years. I walked, I did adapted yoga and pilates. I handcycled and did seated arm-workouts. I tried. I meditate. And my body has continued, step by step, part by part, to decline.

As I watched the webinar, I felt like the doctors were not talking to me, but only to the once-able-bodied audience, who have the potential to return to that state. Most of me feels that I am stuck here and that it’s just going to get worse. And that’s not a great headspace to be in. As Gupta says, “The mind believes what you think about your body and carries it out as instructions.” This is why we are supposed to interrupt negative thoughts and replace them with a hug for our worried part, basically. 

I don’t know how to apply what I know and what I’ve learned to my own life, other than all the ways I’ve already tried. And I know that I’m not so special that nothing will work; I’m not so far outside of regular human experience. I can still apply The Gupta Program to myself, and mindfulness meditation should still be able to me too. I am just tired of trying. And I’m tired of trying to accept and surrender. I am tired of “discomfort.” (One of the ways to help chronic pain is to “reframe” it. And while I mock this, I also understand that it can work.)

One of the ways I am struggling is that it isn’t just cerebral palsy that I’m dealing with. I do think I can succeed at acceptance and surrender there, and live a good life with the ever-present “discomfort.” It’s the other parts, the throat pain and the forearms, the neck and shoulders, the constantness of it all, that is hard for me to understand and to accept. Feeling like you have strep throat every second for years isn’t healthy and normal. I want there to be a reason for it, even if it is my hypersensitive nervous system that I haven’t yet successfully calmed. But no one can tell me for sure, so I am just here, flailing in the dark, tired and struggling. 

I didn’t plan to end on such a low note. But it’s not my job to spin my life into some inspirational lesson learned, now is it? I feel my purpose here is to document my experiences, to not feel alone and to let others know they’re not alone either. So, here I am with my discomfort, reaching out to you and yours.

Getting an MRI with Cerebral Palsy

danielleshanti

In my last post, I wrote about my first ever neurologist appointment. Dr. X wanted me to have an MRI of my c-spine, and if that came back normal, of my brain. All because of some suspiciously robust reflexes (hyperreflexia) in my upper body that may signal a herniated disc or spinal compression in my neck. 

I was dreading another head-first-into-the-machine MRI. This would be my second head-first, and my fifth overall. I tried to get medication a couple weeks beforehand. But using the messaging system in the patient portal takes a long time. I asked the neurologist for something to help me get through it, and let her know I was currently taking tizanidine. This is a new pain medication I was trying, a muscle relaxant that was having no effect whatsoever. She wrote back that I should just take that and it should help. I wrote back that in fact I had just spoken to pain management and they told me to stop taking it since it wasn’t helping. She wrote back and said that she couldn’t prescribe medication to me and that I should ask my primary care doctor for one dose of ativan. I did. All of this took days, the back and forth. Because of course it’s not actually the doctor reading or writing the messages, but a nurse or some other go-between. By the time I wrote to my primary care doctor, I think it was the Thursday before my Tuesday MRI, and I had little hope of getting the medication. Yes, I probably could have called the office and sped things up. I did not.

My MRI was at 6:45pm. I liked that the hospital was nearly empty. I did not like that I had to get undressed and put on two gowns and put my shoes back on. (By now I know not to wear anything with metal.) I had decided to leave my walking poles in the waiting room with my husband. 

My MRI tech, Jeff, was nice. I told him that I have cerebral palsy, and have very strong reflexes in response to loud noises. My MRIs tend to be “motion degraded.” I asked for help with the earplugs, because I can never get them to stay very well. Jeff obliged and really shoved them in there. I also asked for some extra weight on my legs, and he put a significant amount of weight on my lower legs (folded blankets, I think). I would have about fifteen minutes in the machine, then out for the contrast injection, and then back in again. He told me that it was okay if I needed to move during the quiet parts, and that it was only when the machine was making noises that it was taking a picture. Swallowing was okay, and there was no need to hold my breath. (Depending on the MRI, sometimes this is necessary. Yikes.)

I find that it’s less uncomfortable if I keep my eyes open. When I close my eyes, then my brain really starts revving up. There were two scratches on the smooth white surface above my face, and focusing on them helped me, rather than looking at a plain white expanse. I think doing the Gupta Program helped me stay calmer than my first experience. I breathed and I told myself, “I am absolutely safe. It’s okay to feel anxious.” I was reminding myself that everything was under control and that there really was no danger, while also accepting my feelings. Repeating this steadily to myself helped more than singing a song in my head or doing grounding exercises (focusing on what I could see or feel).

That’s not to say that it was an easy experience. My legs absolutely tensed up with the loud, unpredictable noises. And once they were tense, even with the weight, they didn’t want to relax. I sometimes felt a near panic that I needed to move and couldn’t hold still against the barrage of sound any longer. When I swallowed, sometimes they were giant, anxious swallows. 

Jeff kept me updated: “The next one will be three minutes.” Then, “This one’s longer. About four minutes.” Then, “This is the last one, but it’s a long one. Five minutes.” Have you ever tried to hold absolutely still for five minutes? While horrendously loud, electronic, machine-gunnish sounds assault you? In a small space?

When I was let out for the contrast injection, I still had to hold my head absolutely still. No moving. Then back in. At the end he said, “It was nothing you did, but I’m not satisfied with that last one. If you can tolerate it, I’m going to recalibrate the machine and do that one again.” Okay. The back of my head was hurting, stinging from lying on the same surface for so long.

When it was finally over, Jeff told me to sit up and stay there a moment to get my bearings. I told him that if this MRI came back normal I would have to get a brain one next. I asked if I could see the thing that goes over your face. I thought that if I saw it in person, rather than on an informational video, it wouldn’t seem so horrible. I was wrong. It does seem really, really horrible. I crossed my fingers for this MRI to show something.

It did not. Well, it showed some things, but nothing to explain the symptoms that prompted the neurologist to order it (forearm pain and hyperreflexia). The skeletal system peaks at thirty, so everyone over thirty is going to have something show up in their spine.

Here are my “findings”:

Slightly motion degraded study. [Only “slightly” motion degraded this time. Yay me!]

Alignment: There is normal alignment of the spine.

Vertebral body heights and marrow: Normal.

Spinal Cord:The craniocervical junction is unremarkable. The questionable areas of signal alterations versus artifact scattered through cervical spinal cord probably artifactual. There is no abnormal enhancement within the limits of motion degradation.

Soft tissues: Normal. 

At C2-3: Unremarkable.

At C3-4:Unremarkable.

At C4-5:Mild disc bulge. Uncovertebral joint hypertrophy and facet arthropathy with left mild to moderate foraminal narrowing.

At C5-6:Mild disc bulge. Mild left foraminal narrowing.

At C6-7:Mild disc bulge and thickening of ligamenta flava.

At C7-T1:Unremarkable.

IMPRESSION:

1. Mild degenerative changes of cervical spine with no significant spinal canal or foraminal stenosis.

2. No obvious cord signal abnormality or abnormal enhancement within the limits of motion degraded study.

Look at all the normal, unremarkable stuff going on in my neck. And sure, for a neurologist “mild disc bulge” is no big deal. For me, it confirms a lot. My neck has hurt intermittently since 2008 and every moment of every day since June 2016. I infer that these mild degenerative changes aren’t supposed to be enough to cause the kind of pain and issues I’m having, and that my brain is just being hypersensitive about it all. I’m glad I don’t have a herniated disc or a compressed spinal cord. That’s great.

But it does mean that I’m having a brain MRI with and without contrast next month. No use worrying about it, but that won’t stop me. Time to meditate. 

Danielle Visits the Neurologist

danielleshanti

In June 2022, I had my first visit with my new rheumatologist. Because of the ongoing pain in my forearms (and my unremarkable EMG), he referred me to neurology. That neurology appointment recently took place, in February 2023, eight months later.

I was born with cerebral palsy and I have never been to a neurologist. That will probably surprise some and not surprise others. Some babies with CP see a neurologist right away, and other people with CP go their whole lives with only a primary care provider. People’s experiences, resources, access to services, and co-existing conditions are as varied as the people themselves.

Once again, my husband took me to the big city and “worked from home” in the waiting room. My appointment was with Dr. X, but another doctor, a female DO, began the appointment, and I gave permission for a male doctor (an intern? I forget) to observe. I am officially at that age where I am inclined to put the modifier “young” before both these doctors.

She began by listening to my history and asking questions about weakness, fatigue, etc. She even asked about my celiac diagnosis and whether it’s well-controlled. No. No it is not; numbers are still high. She also asked whether other autoimmune diseases run in the family. 

Then she started the physical assessment, explaining to the intern what she was doing and asking him questions. He got my positive Babinski reflex correct. (This reflex is supposed to “disappear as the child gets older.” I just looked it up.) I was familiar with the strength tests on my legs, of course, the checking of reflexes, the way my ankle flexes repeatedly in sustained clonus in a way that I could never replicate intentionally. 

Then she moved on to my upper body. I don’t ever remember having my upper body reflexes assessed. Well, they must have done some of this before the EMG. The EMG team used a giant safety pin to prick my skin in various places and then placed it in the sharps bin for incineration. Here, she used a broken tongue depressor, its shards just as sharp. I could feel the sensation evenly throughout the body, wherever she pricked. The upper body assessment is similar to the lower body, testing whether I could press into or push against her hands using different muscle groups. She tested reflexes. Used tools to see if I could feel cold and vibrations. 

Eventually they left and conferred with Dr. X. When the trio returned, Dr. X said something along the lines of “You have many different things going on! It can be difficult to know which condition is causing which symptom.” Yes, thank you for acknowledging that.

She pulled out her instruments and repeated some of the tests. When she got to my clonusing right foot, she invited the intern over to do the left. Glad to be of service. Seriously though, every adult with CP out there would probably love to help doctors learn about CP in adults! We want to be seen and understood and helped.

So, yes, the reflexes in my legs are strong. Watch out with that hammer on my knee because I might kick you. We are not surprised by this, as it’s pretty textbook CP stuff. But then she did a couple tests on my hands and arms and was like, “Wow! Strong!” Like, not in a good way. English is not Dr. X’s first language, and I didn’t always follow what she was trying to tell me. I think doctors in the US are trained not to show surprise or alarm, though, and Dr. X definitely let her feelings show. It’s kind of nice, I think. Validating. Except that she kept asking if I lose control of my bladder or bowels, and said that if that does start happening I should contact them right away. Hmmm. She suspects a herniated disc in my neck, which is when a disc compresses a nerve. I had a positive Hoffman’s sign, which can also indicate compression of the spinal cord. (See Cervical Myelopathy). Get this, someone with a compressed spinal cord can have a spastic gait. I mean, it’s a little bit funny.

It’s like that song from Sesame Street: “Three of these things belong together. One of these things just isn’t the same.” My version would go like this: “Three of these things are CP-related; two of these things could be CP-related but also could be several other things that are completely unrelated.” Catchy, no? I could make a Venn diagram with CP, cervical myelopathy, and fibromyalgia, and there would be a significant overlapping middle section. Fibromyalgia is something I’ve been thinking a lot about recently that makes a lot of sense with my symptoms. I asked Dr. X about it. She kind of chuckled and said that’s not her area and that I’ll have to ask a rheumatologist. Will do. At my next appointment in June. 

Anyway, Dr. X ordered a cervical spine MRI and told me to schedule it as soon as possible. (For the record, the doctor who conducted the EMG recommended the same thing, and I reaaaally didn’t want to have another MRI.) If that comes back normal, then I’ll have to get a brain MRI. Yikes, nope. No thank you. Someone sedate me. I’m trying not to freak out about this c-spine one, and I think I will have some medication lined up beforehand. When scheduling the MRI, I said yes to being claustrophobic. I don’t think it’s claustrophobia, exactly, but more the triple whammy of a small space, unpredictable loud noises, and that I am required to hold still. A person with spastic CP cannot hold still when there are loud noises! If I were allowed to crawl in that tube, move as much as I needed, and take a nap in the quiet, I think I’d be fine.

I’m in one of those situations where I’ve had a new appointment with a new specialist and I’m thinking, Maybe this is the one who will figure something out. This is the one who will find the issue and know how to help me. Maybe I have not only an overactive amygdala, but also something actually physically out of place. I’m kind of hoping for something to be wrong, to have–apparently a unicorn in medicine–a definitive answer. I asked Dr. X what we do next if there’s a herniated disc, and she said she’d refer me to a surgeon. Huh. That doesn’t sound great. I did some research, and most herniated discs aren’t surgical, but I also don’t have a lot of hope that the non-surgical treatment options will help. I feel like I’ve done most of them. But I haven’t done most of them with “herniated disc” as a diagnosis. 

At least I have confirmation that there are some things going on with me that aren’t right. I’m a bit frustrated and sad that I’ve had these neck issues since at least 2016 (I first vomited from neck pain in 2008. Who knows if that issue is this issue.) I’ve done the doctor appointments, PT, ultrasound, massage, acupuncture, heat, ice, NSAIDs, etc. We’ve all figured it’s from CP/posture/aging, and nothing has helped. It’s exhausting to be in constant pain. It isn’t easy to balance accepting how CP affects an aging body and pursuing further medical care in case it’s actually something else. Of course whatever is going on with my neck and arms is surely posture/aging related. What I mean is that, if I didn’t have CP, we might have arrived at the neurologist years ago.

I feel like this is kind of a PSA to the cerebral palsy community: Yes, we have to live with a lot. Yes, we will most likely experience an increase in pain and a decrease in function. But if something new comes up, don’t automatically accept it as “just part of living with CP.” If you feel like something isn’t right, you’ve got to advocate for yourself until you feel satisfied that you’ve pursued the possible answers. 

Sending love out into the world. Sending patience. Sending hope. We need it.

Something’s Afoot

danielleshanti

November and December have been busy, and in very tiring, healthcare-type ways.

I now have my own gastroenterologist, following the spike in my tTG number earlier this year. To recap, it started out at >250 in 2018 when I was diagnosed with celiac disease. In January 2021, it was 156. The next time I was tested, April 2022?, it was 221. I was shocked, and referred to GI. 

The GI doctor wanted to do another endoscopy, and I really didn’t want to do that. I got the celiac panel done again (September?) and my tTG was 98. Under 100! Hooray. (It’s supposed to be under 15.) We can hold off on another endoscopy. I did get referred to their dietician because the ONLY POSSIBLE ANSWER is that I’m still being exposed to gluten somewhere. I recently had that appointment, and I talked to the dietician for an HOUR. She also took my info to her celiac group and asked for their input. I came away with these three things: double bag anything containing gluten that my husband eats, don’t eat “modified food starch,” as that can be from wheat, and …stop eating certified gluten free oats. Oats have a protein in them similar to gluten that a very small percentage of people with celiac react to. So, I will stop eating oats and get tested again in April 2023. We’ll see if the number comes down. She said that the 221 result must have happened right after I was accidentally exposed to gluten, and then the number came down again. I want the number to be under 15, of course, but I also don’t want to eliminate oats from my diet. If you don’t eat gluten, oats are often used for pancakes, baking, etc. They’re not just a breakfast food. Sigh.

I also had my six-month follow-up with the rheumatologist. He didn’t find any evidence of another autoimmune disease in June, and he didn’t this month either. But because I have a positive ANA and a positive centromere antibody, I get to check in with him every six months in case I develop lupus or scleroderma. He had referred me to a neurologist in June, and that appointment is coming up in February. At least I like this rheumatologist. He is not condescending, and he seems sincere when he wishes me well.

Furthermore, I got up to a 600mg 3x/day dose of gabapentin before deciding to come off of it. It wasn’t doing anything good, and I think I was experiencing a couple side effects (though it’s hard to know for sure). I wanted to come off gabapentin before trying duloxetine (or a gelatin-free alternative?). So, I had a follow-up appointment with the pain management doctor, but he couldn’t tell me much except that I’d have to talk to the compounding pharmacy to see if I could get an animal-free one, or if I could just remove it from the capsule and ingest the contents. My insurance doesn’t cover compounding pharmacies, so I’m wary of the cost. And I still haven’t been given their contact info, so no progress has been made on that front. I was also referred to physical medicine and rehabilitation, who can help me go in another direction (like oral baclofen), months from now, if duloxetine doesn’t end up helping. 

And finally, something else is afoot. My right foot. In August, it had begun to hurt with no known precipitating factor. Except that I spent the summer in bare feet or slippers rather than snug footwear with lots of support. My feet will periodically “give out” or “collapse” and be really painful and then it will go away. Sometimes I can’t put weight on it, but it eventually works itself out. This time, it did not. There was no fracture or sprain. But there was a small, painful bulge that did not go away with cold or elevation. Hmm. I now wear “inside shoes” in the house, and I don’t like it, but I need to. 

I was referred to an orthopedist. He did not know what the bulge was, and I was sent away with a lace up ankle brace, a PT referral, and a follow up appointment. Sometimes I could walk on it without much pain at all, and sometimes it was extremely painful and I could bear no weight at all. PT did not help much. I went to my follow up appointment with a new tactic. This time, I drew a map of the pain on my foot and ankle. You can see the swollen part–it’s the squiggle rather than the straight lines. Just below all the blue on the side is the scar/indentation from my 1992 calcaneal neck osteotomy with lengthening. This area has for years periodically produced a sharp pain, and I’ve wondered about the integrity of the bones following the procedure.

Sorry if feet gross you out; pictures coming:

The doctor didn’t blink at the marker on my foot, nor did it seem to elucidate anything for him. I felt frustrated going to a follow up when nothing had changed or improved. He suggested that the next step would be an articulated (hinged) AFO. That’s a little funny, but fine with me, if it will actually help. Funny in that I had lots of different AFOs as a kid, and then tried to use two ExoSyms with knee sections as an adult. And now we’re here. 

I wanted to know why I have a seemingly permanent bulge on my foot, and I wanted this doctor to be able to tell me what it was. As in, my foot felt fine, and now it doesn’t and I actually have something visibly different/wrong. Help, please? He said he could order an MRI if I wanted. 

I had an MRI (My fourth now, but at least the top half of my body was out and the ceiling was pretty.) I went to see the orthopedist for the third time to discuss the results. He had me take off my shoe and point to where it hurt, again. I wanted to bring up the marker picture and show it to him, again. 

“It’s the swollen area,” I said, pointing to but not touching the bulge.

“Here?” he asked, touching a bony protrusion that’s been there for years and is not the new mysteriously swollen area that I’ve seen him for twice already.

When I touched the correct spot he said sometimes people get fat deposits, “though you have a pretty thin foot.” Yeah, it’s not a fat deposit. I wouldn’t think those would be painful to the touch and render you unable to bear weight. 

I know he’s got loads of patients and he’s doing his job and he’s trying to figure it out and be thorough. But I am still frustrated by the whole thing. The MRI didn’t seem to help him with anything. Well, it ruled some things out. It showed I do have arthritis. In case anyone is keeping track, I have arthritis everywhere we’ve looked so far: lumbar spine, hip, foot. So the prediction of arthritis by 40 with CP is spot on. It was probably there at 30.

We’re still proceeding with the AFO, just as we would have done without the MRI. I asked him, “Is this just for the right foot?”

He seemed surprised that I’d want anything on my left foot. I explained that usually, whatever happens on the right side of my body happens on the left eventually. And my left side is more affected and usually needs more support than the right. He did ask me to walk like three steps in our first appointment, and he asked me to take off my left shoe and sock and stand right then. “Yeah, that’s pretty flat.” And also, “Wow, your calf is really tight.” Yes, yes it is. Yes, I stretch it. No, that doesn’t do much of anything.

I tried to impress upon him that I do NOT want to wait until I have chronic, horrible pain on the left side too before we do anything for that side. I would like to PREVENT if possible. And I do sometimes feel twinges on that side that I’m trying to just let be whatever they are and not worry. I try to see my future with a walker or a wheelchair and see that future as absolutely okay. Because that may be where I’m headed, sooner than I’m prepared for. Thousands of people use different mobility devices and aids for different situations. I use poles now, and they won’t be enough if this foot thing progresses. So. AFOs coming up next month, at least for my right foot, with possibly some other kind of insert for my left. It would be lovely if they actually helped.

I have continued working with The Gupta Program. I have not had any other spectacular breakthroughs like the one in October. I still love meditating, and I do often have tingles and sensations on my jaw and neck and shoulders. But no big releases and no change in my throat. And I’m really tired. I’m supposed to just have faith that I’m on the right path and let all the fear go. Because “what you resist, persists.” I am supposed to accept and surrender and then my nervous system will calm down. It’s a lovely idea and it makes a lot of sense, but I am struggling with it.

I’m finding a central idea of the whole thing fascinating and quite the tangle. I said before that doing The Gupta Program feels a little like doing therapy on yourself. Because what you’re doing is calming your mind (or attempting to) whenever a worry or fear comes up. 

Probably anyone who’s taken psychology or been to therapy already knows this, but if I ever learned, I don’t remember it. Apparently, humans have the core fear of Separation or Abandonment (from parents or the tribe). This then leads to fear of rejection (being unlovable) and fear of failure (not being good enough). 

So, even though I had a pretty darn secure and loving childhood, there’s still this subconscious fear there. I mean, at some point as a kid I heard that long ago sickly babies were just left out in the elements to die. That stuck with me. Then I learned that Hitler first experimented with poison gas on the mentally and physically disabled. That stuck with me, too. And of course, it’s not just literal abandonment; it’s fear of failure. That, I totally get–I was absolutely afraid of making mistakes and doing something “wrong” as a kid, and that perfectionism has stuck with me. 

My question is this: if it’s part of the human condition to have these deep, unconscious fears, even if we haven’t been abandoned or abused by a caregiver, then how are we supposed to truly convince our subconscious to let them go? 

I keep telling my worried inner self that I’m safe (I can do that without lots of mental gymnastics now), that I’m loved, and that I’m good enough just the way I am (just like Mister Rogers said). But I don’t think my inner self believes me yet. I mean, consciously, I know those things. Apparently, though, I haven’t convinced my nervous system. It makes me really sad, actually, to look around and imagine each one of us carrying around these fears and worries. Being human is such a struggle. 

May 2023 be a better year for all of us. May it be full of moments of peace and contentment, love and joy.

I’m Acknowledged in This Book!

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For the past few years, I’ve made myself available as a sensitivity reader (or authenticity reader) for able-bodied authors who are creating a character with cerebral palsy. An authenticity reader is anyone who is living an experience that the author is not. That reader is able to share their real-life perspective so that the fictional representation is more authentic and avoids stereotypes. More about sensitivity reads on my website. 

FLY, by Alison Hughes, is the third professionally published novel for which I’ve served as a sensitivity reader, but it’s the first where the character with cerebral palsy is the story’s main character. Felix is a fourteen-year-old power wheelchair user. Every portrayal of CP that I’ve commented on has been different from my own CP, either milder or more profound. I don’t always feel comfortable speaking as an authority on CP when everyone’s experience is different. But that’s why it’s recommended to have multiple sensitivity readers when feasible.

Working on this manuscript was lovely because it’s a middle grade novel in verse, which makes it a more approachable project than a longer work, and it already had so many “cerebral palsy moments” where my only comment was “Yes!”

FLY was released by Kids Can Press on October 4, 2022, and the author sent me a signed copy. I recently read it, and I really, really love seeing the way a story changes from later-draft manuscript to published version. Yes, I feel proud when I see that a suggestion of mine made it into the book, but I also love seeing other changes, changes that I wouldn’t have thought of that make the story much better. So, yes, I wholeheartedly recommend FLY for anyone twelve-ish and up (the content does include some drug-dealing at school). And I’m not just recommending FLY because I had a small part in it. The story is just the right mix of funny and serious, with just the right amount of sarcasm and introspection.


If you’re looking for more stories about people with cerebral palsy, here’s the goodreads list I created for books that feature cerebral palsy in any way. I’m only allowed to “vote” for 100 books, and I’ve reached my limit, so please add more books if you know of any!

Getting a Mammogram with Cerebral Palsy

danielleshanti

I recently, finally had my first mammogram, and I think it’s important enough to write about. Annual health screenings are an excellent way to prevent cancer, and mammograms are recommended beginning at 40.

I put it off all of last year (40), and I’ve had several calls and proddings from my doctor’s office throughout this year as well (41). Now, 42 is only a few months away. It’s not that I was really nervous about it. I think I’ve just gone to so many appointments and had so much imaging lately that I didn’t want to do another one. That, and I’ve never done it before. 

I scheduled it in person (because, yes, I was already at the hospital). When they asked if I needed any special accommodation, I told them that my balance really isn’t good. 

“Can you stand for twenty minutes?”

Yikes, twenty minutes? “No. Can I do it sitting down?”

“I can make a note here.”

I figured that wheelchair users must get mammograms all the time. At least, I hoped they did, same as everyone else.

When the day came–I rescheduled it. I can have some pretty intense breast tenderness before my cycle starts, and the timing wasn’t cooperating with my appointment. I didn’t know how uncomfortable this was going to be, and I really didn’t want to have my already painful breasts squished. Good on you and your reproductive system if you’re able to schedule around this on your first try.

On the new appointment day, I was ready. I didn’t wear any deodorant or lotion as per appointment instructions, but no one asked about that. I was led back to a tiny changing room and told to undress from the waist up, and put on a gown with the opening in front. I hate those things; they’re way too big, heavy, awkward. 

Then I was led into the imaging room. I had my poles with me, and I asked if I was going to be able to do it seated. The woman (mammographer?) said, “We can try, but the images won’t be as good.” I said we could try it standing with my poles. 

She explained how she would take the images, that I’d be asked to hold my breath for a moment and then breathe out. That there’s one that’s a little more uncomfortable because it gets into the armpit, but if you stay relaxed it isn’t too bad. 

I said that there’s no way I could relax the muscles around my armpit while I’m trying to stand with my poles. She said I could hold on to the machine and sit in between takes. That’s what we ended up doing. The room was tiny, so there was about one step between the counter and the machine. She showed me where I could hold on with my left hand while she did the right boob. There’s a little recessed handhold on the side of the machine. Oh. No one told me it’s designed for holding on to. That changes everything. It was all completely fine. There’s lots of space around the bottom of the machine too that’s fine to grab. I was able to hold on with both hands, even putting weight on the upper body when I had to reposition my feet. (“Step a little closer and turn a bit this way.”) Then I used the right handhold to do the left boob. Yep, handholds on both sides. Brilliant. 

The other thing that I was really grateful for was that she stayed in the room the whole time, so the process was a lot quicker. None of this holding myself in an awkward position while the tech leaves the room–beeeep–and then walks back in, as with an x-ray. 

We did have to do some of the images a couple times for her to get good ones. I don’t think I was following her “Hold your breath. Now breathe” instructions exactly. When someone tells me to hold my breath, my instinct is to inhale first (gotta have enough air, obviously), but I don’t think she factored that in. She did indeed have the chair right there for me after each one, so I could sit while she checked the images and repositioned the machine.

Next year, I’ll say that I’m fine taking off my shirt if they don’t care either. Because sitting and standing repeatedly in that gown was ridiculous. And then the woman, whose job it is to look at and handle breasts all day, has to bare one shoulder, and get the gown out of the way of the machine, and carefully bare the other shoulder, protecting patients’ modesty. I almost just took the gown off right there. Next time.

The whole thing took like ten minutes, and that’s with all the do-overs. It’s so not a big deal. And it’s not painful; it’s just very firm squishing. At least, that’s what it felt like for me.

It’s nice to know that my little (tiny) pair are doing just fine. I do have dense breast tissue, so if you’ve been rationalizing that your boobs are small and nothing seems amiss, know that even with self-exams you may be missing something in its early stages, which is, of course, the best time to catch it. 

Here’s a good video from Johns Hopkins to help you feel prepared (no robe for me, but I did have a real door on my dressing room):

What to Expect During Your First Mammogram

Here’s an awesome video from Australia that shows a wheelchair user with CP getting a mammogram. No awkwardness around breasts in Australia! I can only hope that providers in the US are as lovely as the ones in this video:

Breast screening with a disability

If it’s time for your mammogram and you’ve been putting it off–now’s the time to make your appointment!

Soften and Flow

danielleshanti

In my Safety Dance post, I wrote about using The Gupta Program to calm my hypersensitive amygdala and get back to a parasympathetic state instead of nearly always being in a state of fight/flight/freeze. I wrote about how complicated it feels to use this program while living with cerebral palsy. 

There’s been no magical transformation and I’m still working on it. In this post, I’ll refer to many of the core messages in the program. There are over a dozen lessons, with several recordings to watch in each session, and there’s also a 12-week webinar, which is live. I started the program in July, and the next webinar series began at the end of September, so I’m only four weeks into that, while the recordings are obviously self-paced. All that to say, when I use quotations, I’m quoting Ashok Gupta, either from a video recording, a meditation audio track, or a webinar.

I signed on to the Gupta Program to help with Chronic Inflammatory Response Syndrome brought on by exposure to mold. I’ve always been skeptical of CIRS, as it seems only to exist in functional medicine circles and lacks scientific research. But brain retraining can be used for all sorts of conditions, including chronic pain and anxiety, so I figured it was worth a try, especially since the main CIRS symptom I want to ease is my chronic, sharp, neverending throat pain.

Early on in the program, Ashok says, “You don’t have this condition anymore.” If you’re comfortable, he says, you can let the diagnosis go. Sometimes labels are helpful because they provide validation and reasons for symptoms. But it can also be liberating to let go of the label and stop thinking of yourself as sick. Instead of bearing the burden of a chronic illness, you can reframe and think, “It’s just a loop in the brain!” (See the Safety Dance post linked above for more explanation about this “loop.”) It felt good for me to release the CIRS label and stop thinking about mold. My brain is just being hypersensitive and reactive, and I’m retraining it. Great.

But. Cerebral palsy is not “just a loop in the brain” that I can learn to unloop. At first I was trying to only use the program for my throat, for what I thought was mold-related. I figured I was doing fine with CP stuff; those pains are there and I’m okay with them. 

Then I did something that really flared up my right SI joint and gluteal tendonitis. You know how it happens–you’ve got a chronic issue, but you don’t realize how good it’s been until it’s bad again. Apparently, I’d been dealing with regular glute/groin/hip stuff, but my SI joint had actually been pretty quiet. Until it wasn’t. Wow, did it hurt. Oh THERE you are, SI joint pain. I did not miss you at all. In fact, now that you’re back, I’m LOSING MY MIND. It really threw me. (Mostly because I feel I could have/should have avoided it, and I did not.) I was angry and sad and so frustrated, and I did not want to deal with it all over again. I knew it would ease eventually, I just didn’t know how long it would take. And I DID know that, now that it was flared, it was going to be easy to continue to mess with it, just by doing daily tasks. Like moving. I realized that I needed to use the Gupta program for all my symptoms, and stop trying to separate the different conditions. I needed to meditate and calm down because panicking about this new pain spike was definitely not helping.

I keep reminding myself that this program can help with chronic pain. And then I automatically think, “But since I’ll always have cerebral palsy, and it’s my ‘maladaptive’ movement that’s creating the pain, how is this going to help?” Then I remind myself for the hundredth time that “We’re not changing our symptoms; we’re changing our worry about the symptoms.”

The goal is not to treat the pain, but to change the brain’s perception of the body, to train the brain to recognize that, yes we have this sensation, but we are not in danger: “Thank you for sending warning signals, but stand down, I’m okay.” Yes, indeed, I DO and always WILL have chronic pain. And what’s more, it’s going to change and shift throughout the day, and through the months and years. I am experiencing and will continue to experience a decline in function. And that’s OKAY; I will handle it. I have to teach my amygdala that all that is simultaneously true and okay. And that’s not easy. Acceptance of pain is really, really hard, but that’s what we’ve got to achieve in order to calm down this overactive response. If we succeed in changing the brain’s perception, THEN the pain may lessen. But we have to be okay with whatever happens. We have to not be attached to the outcome. If we resist the sensation (pain), then we haven’t accepted it. And it’s the resistance, in part, that the brain is reacting to; the brain is perceiving danger.

Have I succeeded in accepting my pain? Nope. Some days I’m better at it than others. Honestly, my throat pain drives me to distraction. Partly because it doesn’t make any sense and I don’t want it to be there. Years ago, I took a cannabis sleep gummy and woke up and it was gone. I was a new person. It was such a relief; I felt lighter and happier and just so much better. It came back a few hours later, and cannabis doesn’t do anything for it now. The idea that I’ll never be rid of it is unbearable. So you can see how well acceptance has been going. 

During the day I’m supposed to stop and retrain my brain every time I notice “a negative thought pattern.” This can be anything I think about my body that a healthy person wouldn’t think. For my throat that’s easy: “My throat hurts so much.” “What if this never goes away?” “Maybe it’s another illness we haven’t figured out yet.” “I need to google xyz.” “I wish I could sing along to musicals like I used to.”

But for cerebral-palsy-related thoughts, it’s a completely different story. We’re supposed to retrain “body scanning” (checking the body for symptoms) or any kind of attention on the body that a healthy person wouldn’t have. Attention on the body? My attention is almost ALWAYS on my body! I’m not exaggerating. 

People with CP have a constant flow of thoughts like, “Watch out for that ___ in the path. Can I step over/around___, or should I go the other way? Do I bother trying to pick that up or should I save my energy? Whoops, don’t put your hand down by that hot pan; hold on to the oven door handle instead. Stand with your feet farther apart. Careful of your left knee. Engage your core; your back is really hurting. At least try to stand up rather than leaning your belly against the counter.” And at least a half dozen almost-fall-and-catches. It’s really nearly nonstop in order to function. There’s always an undercurrent of the awareness of pain in various places. And of course, if you actually do your recommended physical therapy exercises, that’s more, perscribed fixation on the body. I know able-bodied people have awareness and attention on their bodies, too, throughout the day. So where’s the line? I’ve realized that my addiction to YouTube is my coping mechanism. It’s one thing I can do where I can just relax and be entertained and engaged, and later I’ll realize I didn’t think about my body at all. (It doesn’t always work, but often.)

The program is made from the point of view of a once healthy, able-bodied person who is trying to get back to that healthy, energetic body and mind. The videos say things like, “Have faith that your body knows how to get better and return to health and energy.”

“But I’ve never had energy. My body doesn’t know how to get better. It’s never been ‘better,’” I think in response. I struggle because I know that my body is only going to continue to deteriorate, not return to some kind of amazing state of physical fitness. Then I remembered that as a kid, I truly thought it was weird when a peer would ask, “Does it hurt?” For the first 25ish years of my life, I wasn’t in any kind of chronic pain. I’ve been concentrating so hard on the ways that my body and my abilities and my energy are declining and the ways my pain is increasing. I’ve been grieving. I’ve been worrying about the future. But my brain DOES remember what it’s like for my body not to be in pain. I’m so grateful for those first twenty-five years. Hey, that means I’m only retraining 16 years of brain patterns. Piece of cake. 

Ashok says again and again that we need to relax and let go and “Have that belief and faith that you’re on the path to health, that you’re on the road to recovery.” But of course, I’m not going to “recover” from cerebral palsy. So my version of “health” or “recovery” will be different. That’s fine–I’ve just got to get it straight in my brain. Health for me isn’t energetic or pain-free. It’s LESS pain and MORE energy in general. I do think brain retraining can help me with chronic pain from CP. If I can lessen my attention on my body even a little, if I can stop worrying about the future even a little, I can show my brain that I am safe right now, even with CP, and that’s all that my amygdala needs to calm down. Even just a little improvement would be a huge win for me. Furthermore, the potential for better mental health is phenomenal, so I am able to tell my brain with conviction, “You are on the path to better health.” And that’s good.

During the “Soften and Flow” meditation, which we are supposed to listen to at least once a day, Ashok tells us to scan the body (this is the appropriate time to have attention on the body) and find a place of tension. Of course that’s not a problem for me. I usually focus on my jaw and the back of my neck and scalp, sometimes on my forearms. Sometimes on my throat–hey, it could be that everything around my head and neck is so tight that my throat is out of whack. We “become one with the sensations.” We “feel them fully.” Ashok says, “They can’t hurt you.” Here, I used to automatically respond, “It IS hurting me.” I really try to just be with it and not think that anymore. We’re supposed to “welcome them” and treat the sensations “like a guest in our home.” It’s trapped energy/emotion and we’re going to let it go, let it soften and flow throughout the body.

Meditation is really wild. Sometimes my jaw will tingle, sometimes all the way up my face into my eye socket. Sometimes the fronts of my hips will let go and tingle too. Sometimes I’ll feel a giant whoosh through my body and float away. Sometimes my hands will disappear. Sometimes I’ll feel nothing at all. Often, I will cry. Very often, I will fall asleep. Whatever happens physically is gone when it’s over, but the calmness might last for a bit.

I’ve done this meditation nearly 100 times now. Today I scanned my body, and focused as usual on my forearms, trapezius, neck, scalp, throat, jaw. All upper body. When I got to the part where Ashok says, “They can’t hurt you. Welcome them,” I thought, “They aren’t hurting me. They’re trying to HELP me. My entire upper body is trying to help my lower body.” 

Now of course I realize that the tension that I have in my upper body is related to the cerebral palsy in my lower body. I know that my shoulders and neck are like a permanent vise I can’t loosen because of my gait and my posture. But you see, I’ve been thinking of them as a vise, and not a help. How is my brain supposed to know that I am safe if it thinks my neck is in a vise? For twenty, thirty, forty minutes, I thanked my muscles for helping me and told them it’s okay for them to let go now. I told them I have the help and support that I need. Did I fall asleep? Yep, I think so. Did the muscles release? No, of course not. We’re talking about twelve or fourteen years of tension here. It’ll take time. And I’m not focusing on the outcome, right? Right. 

It just feels so much better to think of these sensations as a help rather than a hurt. Goes a long way toward acceptance. That’s a darn good step. Progress is not linear. I do think I’m heading in that general direction, with each jaw or neck tingle a sign that my brain is learning that I am safe, and that I can continue to be safe even when my body has pain.

Pain Management and Another EMG

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My husband brought me home from my parents’ house on September 4th. My two months away was at an end, and I was home again, trying to keep my routine, do my Gupta Program, and not think about mold.

On September 6th, I had two doctor’s appointments in the big city. So once again, my husband “worked from home” in waiting rooms. 

First, I had an x-ray of my lumbar spine again. This was ordered by the sports medicine doctor. He referred me to Pain Management after the injections didn’t work and the EMG on my legs was normal. (Which feels to me an awful lot like, “If injections don’t work and you don’t have a pinched nerve, I have no idea what else to do with you. Next.”)

At my pain management appointment, I had to fill out a LOT of forms, including ones about whether or not I was a drug seeker. I filled in the little person diagram showing where my pain is. Do they even look at any of that? 

I saw a young woman doctor, who was doing her fellowship, and who would report back to the doctor who was certified in anesthesiology/pain medicine. I told her my whole history, and I feel that she could learn to be a little more tactful and gentle. She pushed me to strengthen my core and stop wearing my lumbar support brace so that I’m not dependent on it forever. I agree with everything she said. But of course she does not fully understand what her patients are going through. It’s not like I’ve never tried to strengthen my core. 

Eventually she picked up a model of some vertebrae and explained what radiofrequency ablation is. I think. This is what the sports medicine doctor thought the next step might be. I’d have to come in three times for different parts of the procedure. They burn nerves in the spine, which stops them from sending pain signals to the brain. I mean, sure, stopping the pain signals sounds really good. But it also sounds a little ridiculous. “We can’t help you with your back, but we do know how to destroy some nerves so you don’t feel the pain anymore, but everything that’s going on in there is still going on and progressing. Also, you’ll have to come back once a year because the nerves grow back.” Yikes. Is it worth it? My pain doesn’t hurt that bad, does it? It’s just that it’s always there. So maybe ablating the nerves is exactly what I need.

She left and talked to the doctor. By this time, we’d been talking so long I was afraid that I’d have barely any time with the specialist himself. 

When they came back in together, the specialist introduced himself and said something like, “We’ve been talking and really trying to figure out what would work best, kinda throwing everything out there and seeing what sticks. And I really debated whether to even bring this up. I really debated it, but I want to ask if anyone’s ever suggested a baclofen pump.”

I was definitely not expecting that. I told him no, and I wondered why he went straight to the pump (which is surgically placed inside your body) when there’s oral baclofen. He said oral baclofen isn’t as effective. His thought process was that while there are drawbacks to the pump, maybe because my spasticity isn’t so profound, I’d need less medication for a bigger return. The first step to figuring out whether to get the pump placed is to have an injection into your spine to see if it works for you. Not wild about that either. So, I’m not ready to go that route, but I’d look over more information about it.

What else? Besides those two rather invasive options, there were also compounding cream (out of pocket, $100 a tube; I’m not optimistic that it would do anything), and CBDa. I’ve tried loads of different CBDs, but not this one, and of course it’s supposed to be stronger and better and etcetera. Maybe I’ll give that one a shot. 

And then there’s Cymbalta (duloxetine). I’m trying gabapentin now, and I’m still on such a low dose that I don’t notice anything. I guess we’ll work our way up to the max dose before we decide it does or doesn’t work. I’m not really comfortable with starting a new medication while also increasing the dose on an existing one, because then how do we know which one is doing something? This doctor is fine with me being on both medicines together and seems to really like duloxetine; it works differently than gabapentin, which targets nerves. This doctor thinks that my pain is more muscular, which makes sense, based on the injections that haven’t worked so far. Sigh. I don’t know. His job was to give me all the options and send me back to my primary care doctor to make the decisions. I did also come away with a referral to pool therapy. Sounds nice, sure, but logistically, there aren’t many options.

After that my husband and I had enough time to go have lunch before returning to the hospital for the EMG on my arms. 

I was much calmer this time because I knew what to expect (and because I’d been doing SO MUCH meditation over the last couple of months). And because I’m able to actually relax or contract muscles in my arms and hands when asked. Which is a big plus. Well, I’m able to relax the muscles when they aren’t under extreme duress. It’s possible that this one was more painful than the leg one. Needles going into my hands seem to have trouble. Like they’ve really got to dig. Ugh. Lots of attempted deep breathing. My hands still ached for an hour or two afterward.

It’s kinda rough to go through all that just to be told that everything looks good. I’m glad it looks good though. It’s what I expected. But now what? The doctor who performed the EMG suggested an MRI on my neck and other possible tests. But I don’t want to keep doing these time-consuming, expensive, small t traumatic procedures just to be told everything looks good. 

I just had a followup with my primary care doctor today and we discussed these two appointments. She followed my lead on not moving forward with the neck MRI, and not starting duloxetine until we figure out the gabapentin. Now, the pain specialist really thought the duloxetine had a good chance of working better than the gabapentin. And the real reason I don’t want to take it (which my doctor knows) is that it only comes in a gelatin capsule and I don’t eat gelatin. I understand that gelatin capsules are cheaper than non-animal capsules, but that excludes several populations. Not that drug companies care about people’s religious guidelines, dietary preferences, or moral imperatives, I know. The skins and bones of others are not for me. Will I end up making the choice to consume the skins and bones of others every single day? For now, I’m stepping up the gabapentin.

Transitioning back home hasn’t been easy. I am still not working outside the house. I have not gone back to the school district, so my days are still wide open. And yet, I’m finding it difficult to fully do the Gupta Program, to do my 7-Step rounds as much as the program advises me to be doing them, to do the meditations during the day instead of falling asleep to them at night, to watch the videos and really take in the material. To make a daily practice of it all. To focus on anything. It’s a struggle. 

Safety Dance

danielleshanti

Whenever someone in a book, movie, or show says something like, “I feel safe with you,” I cringe a little. It sounds so fake. Does that mean that person feels unsafe in most other situations? In my mind, feeling unsafe only happens when you feel that you’re in immediate danger–like narrowly avoiding a car accident or being in an abusive relationship. 

However, I have recently realized I am very wrong. My own blog proves it. I  have written that the world is not a safe place, and that my body is not a safe place either. We will circle back to these statements.

After the functional medicine doctor suspected mold was causing my symptoms, and then we confirmed that mold was present in our home, I felt relieved. There’s a reason I feel like I’m in a sharp decline and I can take steps to recover. I spent so much time in bed. I was sick, so I was allowed to rest. While part of me felt validated,  another part of me doubted and questioned and researched. I don’t know if mold is indeed the original cause of my symptoms. There’s so much pseudoscience, but also new research happening.

I decided to spend two months away from my house. Luckily for me, my parents live in Oregon and have a guest room. I’m on day 57 and don’t feel any difference overall. People who’ve recovered say it can take six months or more to feel better. So, while it would have been nice to experience a dramatic improvement, I was prepared not to.

I also decided to start a brain retraining program. The first time I heard the term, I thought it sounded, well, a bit silly. I understand that neuroplasticity is real and it’s amazing, but what does “retraining” your brain have to do with recovering from mold exposure? I’m physically inhaling mold spores into my respiratory system and having reactions. Brain retraining seemed like trying to convince your brain that you don’t have a virus, or that you haven’t injured yourself. Because I was ignorant about it, it took me a long time to look into brain retraining. After I did, it took me a long time to decide to spend the money on it and commit to it. I chose The Gupta Program, which is a six-month commitment. The program is designed to address many chronic conditions that involve inflammatory responses.        

With the world finally normalizing mental health, there’s lots of references around the internet to our fight/flight/freeze response and how to calm it. Typically, there’s reference to early humans running from a predator, how that served a purpose and kept those people alive. It’s the activation of our sympathetic nervous system, our stress response. We feel stressed, scared, tense. When our parasympathetic nervous system activates, our heart and breathing rates slow; we relax and recover. In the modern world, most of our threats are not physical but mental or emotional. But our bodies respond as if the threats are physical, and we have a stress response. (I am paraphrasing Session 3, Module 1 of the Gupta Program. The first three sessions are available on YouTube.)

Brain retraining can help all sorts of chronic conditions that stem from the brain creating a sympathetic response loop. In addition to genes/upbringing and stress, there’s often a physical trigger (illness, mold exposure, chemical sensitivity, injury, etc.) and the sympathetic nervous system switches on to ensure our survival. Then sometimes, it doesn’t switch off. This uses up energy and causes exhaustion. And we end up with a hypersensitive, reactive brain. The brain reacts by over triggering the nervous system and the immune system. This leads to symptoms. External stresses also feed into the immune system and nervous system responses.

Image from The Gupta Program

So why doesn’t the brain switch off the sympathetic response after we’ve recovered or healed (or left the moldy environment)? The brain has become hypersensitive to the symptoms (the very ones triggered by overstimulation of the nervous system). The symptoms tell the brain we’re still in danger, which triggers new defensive responses. The loop, the vicious cycle, is complete. The brain has learned to overdefend. The pain signals mean there’s danger; the brain’s perception of ongoing danger leads to an inflammatory response. 

The core of the brain retraining involves three things: calming the nervous system, stopping the brain from dwelling on symptoms and illness–catching yourself in the moment and redirecting–and reengaging with joy, so that you’re not “waiting until you’re better” to do things that bring you happiness.

When you realize you’re thinking about/noticing a symptom, you’re supposed to stop and tell the worried/anxious part of you, “Thank you for warning me, but you can relax and let go because….” and finish the statement for yourself. For mold it can be something like, “I may have been exposed to dangerous levels of mold in the past, but I’m safe now.” Hmmm. That sounds great if that’s true for you. If you worked in a moldy building and now you don’t work there anymore, say. But if the mold is in your house, and you still live there, then that’s trickier. I thought of “Mold is supposed to be everywhere in the environment, and it’s okay.” Or not mentioning mold at all. I know that lots of people are in my situation. The mold in their home is at “dangerous levels” for them and not for others in their household. So I’m just trying to remind my brain that I’ve lived in my house for nine years and felt fine for five of those years. Calm my brain down to the five-years-ago levels.

My job is to convince my brain that I am safe and that it’s allowed to calm down.

Part of retraining is meditating twice a day, at least. Meditation is all about letting thoughts come and go without judgment and without getting caught up in them. Being an observer of your thoughts. You are not your thoughts. They are just thoughts. Ashok Gupta, in the videos that go with the program, speaks of our dear, beloved mind. I like that idea, being so gentle and loving to our minds, rather than frustrated or anything negative. 

The Gupta Program tells us to observe our thoughts with “awareness, amazement, and amusement.” Yes, it’s pretty amazing what my mind can do. In the car recently, right at the very moment I was breathing deeply and reminding myself I am safe, I imagined getting in a car accident. 

My dear, beloved mind has lots of anxious thoughts. At the beginning of the program I tried out the idea that “My mind is anxious, but I am safe.” I’m okay; these anxious thoughts are just thoughts.

“But we don’t really know that we’re safe,” my brain tells me. And that’s true. That’s the problem. 

Anyone who’s grown up in California knows that the threat of fire is very, very real. When I was young, my parents got each of us kids a bin and told us we could put whatever we wanted in it that we’d want to take if we needed to evacuate. Everyone in California probably knows someone who’s lost their house to “wild”fire. And it’s only going to get worse. That’s a fact. Fire “season” is most of the year, and smoke in the air is a constant summer/fall companion.

Since 9/11, I sometimes involuntarily tense or hold my breath when I hear planes. We live very near a small airport and there are single-engine planes going over our house all the time. And I know that takeoff and landing are the likely times for something to go wrong. 

I could be shot in a movie theater or a grocery store or a church or a school or at a parade or anywhere anytime. This is America. 

I am a woman. Since always, society has told me that it is not safe to be female. It is not safe to walk alone at night. I remember reading a list that told me I shouldn’t wear a ponytail because it’s easy to grab. That I should walk quickly and confidently to not appear vulnerable. But I can’t do that, I thought. I cannot run away or knee someone in the groin. I am vulnerable. It makes me so angry now. No one should ever be made to think their hairstyle has anything to do with someone else choosing to assault them.

Those are four examples of anxious thoughts inside my dear, beloved mind. I have never had to evacuate because of fire. I have never been near a plane crash or shot at or assaulted. But part of my brain always wants me to prepare for the possibility. 

So I sit with my mind and I think, “How can I calm you in a way that you will believe?” If I can’t think “I am safe” without my brain saying, “But…” I have to find another way. 

I came up with “I am safe right here, right now.” Because even if I get shot the moment after I have that thought, I didn’t know I was about to get shot. See? Totally works. It also forces me to stay in the moment rather than worrying about the past or the future.

I used that for a while, and now I am telling myself “I am safe,” hanging out in my parents’ house and there isn’t always an automatic doubt. It’s all about perception anyway. The brain’s perception of safety. Two people can be in the exact same situation and one person will perceive it as stressful or dangerous and the other won’t. 

The Gupta Program isn’t helping me resolve my symptoms; it is helping me change my brain’s perception of the symptoms. I am no longer thinking things like “I am sick” or “I have mold illness.” Instead, I have but a loop in my brain. I am retraining my brain to let go of the loop. If this sounds too loopy to you, just go with neuroplasticity and calming the nervous system. 

Now I’ve worked my way back around to where we began. I have written about how my world and my body are not safe. I may be able to convince my brain that I am safe in my house with the mold. But how do I handle the very real, very physical instability I live with? How do I shift my perception to one of safety when obstacles are everywhere and I keep myself from falling several times a day, every day of my life?

I don’t know the answer to this question, but I’m trying to formulate one. A big part of the Gupta Program is “acceptance and surrender” regarding your symptoms. Stop resisting them and tensing up against them. “Relax. Your symptoms are here, and it’s okay that they’re here right now.” That’s a really challenging idea when your symptoms are constant and have been for years and you just want them to go away already. I’m referring to the throat pain here, not the CP pains. Because I know the CP pains. I do feel like I’ve got a handle on acceptance and surrender to those. Most of the time. I mean, it’s an interesting place to be, trying to take care of yourself and treat what can be treated and accept what cannot, because you have to figure out which is which. 

Part of the guided meditation on acceptance and surrender is, “Whatever happens, I will handle it.” On one hand, this immediately sets off the part of me that worries about the future. But on the other, I think, well, I’ve handled everything so far, so I suppose that’s true. Not that I’ve handled everything well, of course. Survived. The point is that worrying, or ruminating, doesn’t help. But knowing that usually doesn’t stop someone from worrying or ruminating. The flowchart below is beautifully simple, but it also frustrates me because reality isn’t that simple.

In my daily life, I am careful and cautious. Outside my home, I am careful and cautious and hyper aware/vigilant. Scanning for obstacles, calculating safest paths. What is it that I’m afraid of? Falling. Injury. Embarrassment. Causing a disruption. There’s lots to unpack there. But for now let’s focus on falling. I do it pretty regularly, and usually it’s not a big problem. I am to the point where if I fall outside alone, I wouldn’t be able to get up. Sure, someone would come along eventually. So that’s “handled.” (Okay, I do worry about someone holding out a hand to help me up and me pulling them down.) I worry about badly injuring my hands in a fall, especially now that I use trekking poles. That would be really rough. But it hasn’t happened yet. And if it did, somehow, we would handle it. 

It is my reality that my physical instability, muscle weakness, and fatigue increase falls and risk of injury. My perception is that therefore, I am not safe. These two sentences started out as one. I had just written, essentially, that it is both my perception and my reality that I am less safe than an average able-bodied person. Then I separated the two, and I’m staring at them, wondering what to make of them. Are they true? I’m not safe from falling. Falling is scary and it is embarrassing and it does hurt–and it takes an emotional toll. But can I be someone who falls and who also feels safe?

This is the safety dance. Because if I change my perception and do feel safe, so safe and confident that I stop being cautious and careful, I will fall more. That’s not fear or worry talking; that’s reality. And though I know that if I fall, I will handle it, that doesn’t mean that I will start throwing caution to the wind and go around falling all over the place. I still want to take care of myself. 

I have a disability. I am someone who falls, who holds on to things to stay upright, who needs help often. Who lives with chronic pain. I want to type “I am safe” right now, but it’s still true that I don’t feel safe a good deal of the time that I am on my feet. I don’t know how to calm my hypersensitive brain and convince it that I am safe, even with the risk of falling and injury. 

There’s a lot of smiling in The Gupta Program. We breathe in and out with a smile a lot. The brain doesn’t know the difference between a real smile and a fake one, so it releases the same feel-good chemicals either way. Affirmations have been proven to help, too, and it certainly takes time to start believing them.

So I will keep going with this program, and I will smile and I will tell myself, “I am safe. Whatever happens, I will handle it.” And then I will take my poles and I will step out the door.

Right now, that’s the best I’ve got. 

Trees and trees and EMGs

danielleshanti

Last year, I had scheduled additional training days at the Hanger Clinic in Gig Harbor, Washington. Then I injured my groin and started down the road of MRIs and new doctors and injections, not even wearing my ExoSyms. We did not go back to Gig Harbor in 2021, nor did we visit the Olympic Peninsula as we had planned. 

Since we were already going to be in the Pacific Northwest this year, we decided we’d finally visit the Olympic National Forest and Park (hard to tell where one stops and the other starts).

We spent two days in Union and two days in Quinault, with a stop at an “easy” trail in the Hoh Rainforest. It was an easy trail, but parts were challenging for me. If there’s a tricky (rooty and rocky) incline, I start to get very nervous about having to face it coming down. (Usually, if the trail is a loop, I do not complete the full loop). With my back more painful and overall just feeling in decline, I did not feel excitement at the challenge, nor triumph at completing difficult sections of trail that I did that first time I hiked with the triple support of good shoes/lumbar brace/trekking poles. It’s hard to enjoy the scenery when you’re concentrating on placing poles and feet safely. Additionally, some trails we did were popular, with lots of people squeezing by each other. I just felt tired and glad to be done. I’m sure I wasn’t the most enjoyable companion for the physically challenging parts of our adventure. Once, I waited on the trail while my husband went farther. Another time, I read in the car after we did an easy trail and my husband chose another trail to explore for a bit. Reading in the car while my loved one was free to go where he wanted at the pace he wanted felt really nice to me, and familiar. Almost comforting.

Here are a few rather spectacular nature photos from various locations. I’m not madly in love with moss, and there was sure a lot of it.

Nature Trail, Quinault
Hall of Mosses, Hoh Rainforest
Look at that blue water. Seriously, it looks like I’ve been green screened. At Staircase.
These pink foxgloves were everywhere
“Big Cedar,” Kalaloch
Douglas fir

I discovered that many hiking trails in a temperate rainforest are graveled. Sometimes the gravel is packed into the mud until it’s barely visible. Sometimes it’s on top of the mud. One trail even had raised beds of gravel with gaps in between. Gravel is often loose and slippery, and not the best medium for poles. Crunchy, not quiet. I hadn’t known what I would think of the rainforest. While I learned that it’s often breathtakingly beautiful and I very much enjoyed the visit, in the end I concluded that it does not make my heart sing and fill my lungs and my soul the way the redwood forests do.

One of the things I most love about being among the trees is that I am reminded that humans have not yet destroyed everything. On this adventure, I saw trees that were many hundreds of years old, even a Sitka spruce estimated to be 1,000 years old. Douglas fir so gigantic they bore no resemblance to the trees we bring inside our homes in December. Mountains and mountains full of trees and trees and trees. For that, I am grateful.

As our road trip drew to a close, my EMG appointment loomed. I had done well not worrying about it. Many weeks before, I had asked in the cerebral palsy Facebook group about people’s experiences. They ranged from “uncomfortable” to “crying the whole time.” Rationally, I understood that I would make it through it regardless, and that I had no way of knowing how I was going to respond, so there was no point in being anxious about it.

I only started to feel a tight, twisty stomach this morning as I was getting ready to leave. I think that’s pretty good. At the appointment, my husband “worked from home” in the waiting room, and I went in alone.

The doctor, Dr. J, was there with her resident, Dr. H. The resident looked like a very young woman to me, and I realized I’m now old enough to think and not say things like, “Are you sure you’re old enough to be a doctor?” They asked me to explain why I was there, and then the resident did the strength exam. Well, first they thought they were doing arms today, and I explained that the leg one was ordered first and that the arm one was an attempted add-on. Dr. J had to scroll through and find the order for my legs, and I briefly wondered whether there was going to be a problem. No, it was fine–they would do legs today, but I would have to schedule my arm appointment for another time.

Dr. H did the whole procedure, with Dr. J overseeing/coaching and sitting at the monitor. After the strength testing, Dr. H pulled a giant safety pin out of a bag of safety pins and then proceeded to prick me with it in various places, ever so slightly, to ascertain whether I had normal sensation in my legs I think. I could really barely feel it–that’s how little the end of the pin touched my skin. Then it went into the sharps container. What a waste of a brand new safety pin.

After that, the nerve conduction study began, with my right leg. For this, electrodes were stuck around my ankle/foot area. Then they administered little shocks, starting low and gaining in intensity. Dr. J told me they would become strong enough that my foot would jump. At any point I could say stop, and they would stop. I mean, that sounds pretty daunting.

It was mostly okay. At the beginning, when the shock was becoming uncomfortable, I asked, “Are we still at a low one?” And Dr. J answered, “Yes,” quite emphatically. Geez, how strong was it going to get? I really appreciated when they let me know the shock was coming, which was only on a few of them. When they moved up to my calf, that was one painful. Then Dr. J said, “We’re going to do this nine times.” Ack. And then she counted them for me. The unsettling thing was that even when they were over, the sensation lingered a little.

Next it was time for the “needle test.” The Mayo Clinic tells us, “Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). EMG results can reveal nerve dysfunction, muscle dysfunction or problems with nerve-to-muscle signal transmission. During a needle EMG, a needle electrode inserted directly into a muscle records the electrical activity in that muscle.”

They would first measure the muscle activity at rest and then might ask me to do something. I asked what if I couldn’t do what they needed me to. Dr. J assured me that they’d get the information they needed. Though she hadn’t done very many of these on patients with CP, she’d done some. And after the nerve conduction study, she had a very good understanding of my spasticity and the way I would probably react to stimuli. She said something along the lines of my nerves were pretty reactive so it’s possible that I’m more sensitive to pain. And then, “Again, you’re in charge and can tell us to stop at any time. We don’t want this to be a horrible experience for you.” Yikes, right?

Thankfully, I generally have no problem with needles. And these were very small and not very painful going in. Though I did notice they were more painful the further along in the process we got, and Dr. J did say later–explaining to Dr. H why they weren’t going to do anything more–”People become more sensitized to the needle, and then it’s more painful and she’ll continue to have a spastic response.”

They started with the right leg because that’s the more symptomatic side. I lay on my back on the table. Being prone and not being able to see what was going on (but looking away when I needed to) is not a feeling I like. Too vulnerable and too much anticipation/fear of the unknown. Dr. H was great at consistently warning/preparing me: “Poke on three. One, two, three, poke.” And the needle went in as she said poke, but she said it like it was routine and no big deal, not like she was grimacing for me. Again they started down around the ankle, and I had to try to stay relaxed of course, relax my foot. I was able to do this in the beginning–go me. Maybe meditation and breathing is helping? Or maybe the gabapentin? Oh, also, I was really glad I didn’t need to undress. I wore comfortable shorts and a t-shirt and just had to remove shoes, socks, and lumbar brace.

Dr. J continually talked to Dr. H (as she was placing and then moving the needle) and looked at the screen to make sure they were getting the information they needed. She gave me lots of “Good job” comments (Sometimes, “Deep breath.”) and said, “Beautiful!” a lot when a good wavy line must have shown up on screen. Mostly it was uncomfortable and occasionally painful. Like, Uncomfortable. Pain now! That hurts! and then it was over, but still linger-y. I kept wondering if the needle was out yet. It was. 

I had to turn onto my left side a couple times. Everything that was done to the leg stayed below the knee. Then I spent quite a bit of time on my stomach with pillows under my hips and they did several placements on the low back area. Dr. J was advising Dr. H to find a particular spot and then go four finger widths, and I’m like, “People’s fingers are different widths!” But apparently, that’s still what they say and the student-doctor is still supposed to find the correct placement. Dr. H did have to take out a needle and place it in a new spot a few times throughout the whole proess. Dr. J: “That’s one finger width. It should be two.” One time she said, “Leave the needle in and take a step back.” I don’t know if she meant for Dr. H to reassess or literally step back and let Dr. J intervene. (I was lying with my face toward the wall.) I think she did step in once or twice. Dr. J did also come over and show her how to press on a muscle and then do something with the needle. 

One thing I really had trouble with was flexing my ankle (bringing toes toward me) but relaxing my foot? I think? I was asked to curl the toes and still flex the ankle. Nope. The only way to bring my foot toward me is to use my toes. I’m not sure whether they had any real trouble getting what they needed. They were definitely staying upbeat and coming up with alternative ways easily. They continued to make me feel like I was handling things well.

Then they did something on my left side and I was surprised. I had been thinking that they were going to eventually start the whole process again on the left leg, starting with the shocks. Dr. J didn’t feel that was necessary because most of my symptoms are on the right. At the end, they did something really painful that made everything spasm and then I couldn’t relax again, deep breathing and all. Dr. J said they’d gotten everything. But I don’t know if they would have continued with other locations, or if my spastic response had put an end to their data gathering.

I was surprised and relieved to be done, expecting as I was to go through it all again on the left side.

Dr. J told me that my nerves are “normal,” and everything looked good, no evidence of a pinched nerve. So that’s good news. She thinks that my issue is my joints (the hip impingement), my biomechanics (CP). Sometimes physical therapy doesn’t work. Sometimes injections don’t work.

I’d briefly gone over the history/treatment of the labral tear and impingement in the beginning, and now I told her, “Well, I’d had an orthopedic surgeon who was willing to do arthroscopic surgery, but had never done it on someone with CP and referred me to someone at UCD who could do both arthroscopic and open in case I needed open. Then my referral was denied.” Dr. J mentioned a different UCD doctor who did hip surgeries on complex patients. Now that I’m a UCD patient, maybe I’ll get that guy. 

Dr. H showed me out. I wanted to tell her, “Thank you for becoming a doctor. We need young women doctors like you. Good job learning this complicated and rather scary procedure and keeping yourself together when you made mistakes.” I hope she did. I hope she didn’t go and ruminate like I would have. I did not say those things, though. In the end, I was so relieved–I did it! It’s over!–that all I did was go find my husband and go home.

Now I’m supposed to have a followup with my sports medicine doctor, the one who ordered the test when the second steroid injection did nothing. He’ll say everything looks good. We’re back to looking at hip surgery, I think. Exactly where we were nine months ago. Ah ha ha ha. Wah.