Tag: chronic pain

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.

Wonder of Wonders

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After I posted my last blog, I couldn’t stop thinking about my realization that my tight muscles in my upper body aren’t trying to hurt me but help me. I went to bed at 10:00 pm that night and lay there talking to my muscles in my mind, just as I had done earlier in the day during my Soften and Flow meditation.

I told my muscles that it is okay to let go and I thanked them for helping me. I used language from the Soften and Flow meditation and from the brain retraining exercises to let the muscles know that I am safe now and that it’s okay to relax. Similar to my experience in meditation, I began to feel tingling in my jaw. I put focus on my jaw, my neck, my throat, my forearms. Each area began to feel different. My forearms tingled and ached deeply. Other parts of my body softened and tingled as well, not only the front of my hips as before, but also new places like my calves and my feet. Muscles were doing all sorts of things I’d never felt before. 

I was rather surprised but tried to keep up my calming mantra and reassurances and not get ahead of myself. My jaw / TMJ has been tight for years without ceasing. No amount of moist heat or muscle ointments or cannabis has had any effect. Now I could feel all those muscles letting go, up to my eye sockets, up the side of my face to my temple, around the back of my head and my scalp. My shoulders tingled, and my neck. On the right side of my face where my jaw connects to my skull, for years I have felt a bruise-like sensation anytime I accidentally touched it. I’m truly amazed to say that it is no longer there.

I felt shifts in my throat. At some point, I felt loosening in the space between my inner ear and my throat–something actually shifted inside my body. I felt that my hearing was suddenly sharper, then it went dull, and cleared again. I looked up at the ceiling in wonder, perfectly awake at 1:00 am.

When I woke up on October 21st, I found that my forearms and my trapezius had not let go completely. But the ease with which I could open my mouth without any tightness or startling pain in my ear was so lovely. My throat pain wasn’t gone, though it was greatly lessened. I didn’t really care, because I knew now that I could help my body relax, and that’s all that mattered.

I went for a slow, careful walk, as I try to do most mornings. My left calf was so noticeably softened. How delightful the change felt. How amazing to use my poles and feel my step go gently from heel to toe, heel to toe. (Lots and lots of people with spastic diplegia, including me, land toe first or flat-footed.) I felt like laughing. I was full of joy.

I am so unbelievably grateful for this experience. I’m amazed that I get to be one of the brain retrainers who can say that there was an immediate physical change as a result of meditation. A great shift. And I did it, without drugs or procedures, just me and my own brain. 

Has it lasted? Well, not exactly. In fact, I’ve managed, through a new physical activity, to tighten up my neck and shoulders until they’re all more painful than they’ve been in years. The difference is, I have hope now.


But exactly HOW did I manage to achieve this wonderful change? How the heck did I stay awake until 1am when I usually go right to sleep during a twenty minute meditation? What was it I said? How did I say it? Can I do it again? We shall see.

Soften and Flow

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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

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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. 

Two Years with ExoSyms and Cerebral Palsy

danielleshanti

On this final day of June, I want to acknowledge that I’ve had my ExoSyms for two years. Well, I’ve owned them for two years this month, but as we know, I’ve worn them for much, much less time than that.

When I was first fitted for and trained to use my ExoSyms, I was told to expect to get the full benefit from them after two years of dedicated work with them. In June 2020, I was unable to imagine what two years down the road would look and feel like. I began documenting “Day 15,” “Day 50,” “Day 100” and taking weekly videos of my progress. Eventually, I stopped counting the days.

So here’s to us. Here’s to all of us who try something new. Who invest hope and time, and perhaps many thousands of dollars into something that might make our lives better. Who have family that supports us, driving us to appointments and holding our hands. 

Here’s to us who have to acknowledge and adjust when our new adventure doesn’t go the way we thought and hoped it would. When injuries and illnesses interrupt and disrupt our vision of what our life would be.

Here’s to us. We are many.

New PT, new doctor, old tests, new pain, new results?

danielleshanti

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.