Tag: Disability

June and July

danielleshanti

June was busy, and now we’re nearing the close of July already. Here’s a “quick” recap:

On June 13th I saw my rheumatologist for my biannual visit. He checked me for any signs of new autoimmune diseases and found none. I asked him about fibromyalgia, since the cervical and brain MRIs revealed no new information about burning forearms. (Well, the neurologist presumed small-fiber neuropathy and said that fibromyalgia isn’t her area.) 

My rheumatologist pressed on various places to see if I had tender points, asked me if I was depressed and said he didn’t think I was. I was surprised and bummed about cursory fibromyalgia assessment, because tender points pain isn’t used as the main measure anymore.

On June 17th, my husband and I went to Oregon to visit family and we saw The Princess Bride, under the sky, with a live orchestra at The Britt Festival. I highly recommend this experience if there’s one like it in your area. And by your area, I mean, it’s worth traveling to a neighboring state to experience this movie with a crowd of people who love it too.

On June 20th, I had my second upper endoscopy. My first one was in October 2020 at another hospital. Now that I have my own GI doctor, he wanted to see for himself what was going on in there and why my numbers aren’t coming down. I was very anxious and upset for my first one because they gave me this paper that went over the procedure and it stated that I might feel like I’m choking, and I didn’t really understand what the whole thing was going to be like. I got loaded with extra medication, was wheeled in, told to get on my side, and then I was waking up and someone was telling me it was over. This time, while still quite nervous, I wasn’t on the verge of panic. 

I was wheeled into the room and a very nice nurse (?) told me that it would be like taking a nap, I’d be going in and out, and I’d still be able to hear and follow directions. Okay, now that had me on the verge of panic. My doctor came in and checked in with me. I had to gargle some horrible stuff to numb my throat, “for thirty seconds or however long you can stand” that I gagged on when directed to swallow. Then medicine was going into my IV, and the nurse put this thing into my mouth that keeps my tongue out of the way and prevents me from biting the camera-tube. And also from swallowing very well. So I lay on my side, trying to breathe and swallow and not panic, and not knowing how I should feel that I didn’t remember this part from the first time. When was the camera-tube coming? Would I feel like I’m choking? Would I really hear and—then I was waking up and it was done. Geez. I feel like it would be better if they don’t tell you so much scary stuff because you don’t remember anything anyway. I don’t know whether I felt like I was choking or whether I could hear them and follow directions. It’s completely gone. Drugs are amazing and terrifying. Somehow I got dressed. Vaguely remember doing that.  My husband and a nurse took me to the elevator in a wheelchair and we had to wait for it a long time. I have absolutely zero memory of any of that. 

I was relieved it was over. The results showed almost no damage. But it turns out that your symptoms, your numbers, and the state of your intestines really don’t necessarily correlate. I find that so strange and maddening. Well, I’m an obvious example: high numbers, little damage. Nothing looked off about my throat either; I’d asked him to pay attention to that, if he could. This time I wasn’t sent home with color pictures or anything about mild chronic stomach inflammation or anything. I have a follow-up video visit next month.

On June 21st, I had my third osteomanipulation appointment. I still enjoy them, and she can tell a difference in my body, but I cannot. I don’t think having them once a month is very effective, and it’s really the stretches/exercises that she assigns that do anything. No surprises there.

Also in June, I did some work as a sensitivity reader for an ongoing project to update elementary reading material. I am really happy to get to do this kind of work. It’s a great feeling to know that my perspective is not only helpful, but valued. 

On July 1st, we moved! Across town. More on that in my next post.

On July 17th, I had an appointment with my PCP. I wanted to follow up with her about all these appointments and procedures: neurology, PMR, rheumatology, GI, etc. But really, I also wanted to ask for a prescription for an AFO for my left side. The one I got for the right does help a lot, and I was frustrated and mystified by that orthopedic doctor’s resistance to providing the same support for my weaker side. I wasn’t having the same pain on that side, so I understand that part of it. But now, now both my feet just hurt. Often and a lot. Did you know that arthritis can cause a burning sensation? I didn’t, until it occurred to me to look it up. Knowing that it’s probably “just” arthritis (along with whatever was originally going on on the right side) helps me just take it as it comes and not worry too much about, you know, feeling like I legitimately can’t walk sometimes.

I also talked to my doctor about my rheumatologist’s dismissal of possible fibromyalgia and depression, which are often linked. I told her about the two individual instances in the last four years where I felt markedly better, more awake/alive. Happy. Even though the chronic issues were still there. Sometimes you don’t know that you’re depressed until you catch a glimpse of another way of existing. We had talked about trying fibromyalgia medication before, after the gabapentin hadn’t done anything, so she was open to prescribing it.

Here’s what the NIH says about fibromyalgia. It very much feels like me, and yes, I do realize that these symptoms could also be from hundreds of other conditions.

The main symptoms of fibromyalgia are:

  • Chronic, widespread pain throughout the body or at multiple sites. Pain is often felt in the arms, legs, head, chest, abdomen, back, and buttocks. People often describe it as aching, burning, or throbbing.
  • Fatigue or an overwhelming feeling of being tired.
  • Trouble sleeping.

Other symptoms may include:

  • Muscle and joint stiffness.
  • Tenderness to touch.
  • Numbness or tingling in the arms and legs.
  • Problems with concentrating, thinking clearly, and memory (sometimes called “fibro fog”).
  • Heightened sensitivity to light, noise, odors, and temperature.
  • Digestive issues, such as bloating or constipation.

I also told my doctor candidly that I had been on SSDI for a number of years before my five-year stint of part-time work. That I hadn’t returned to my job two years ago, and applied to receive disability again, but was denied. She told me to reapply. I confirmed that it was legitimate to put fibromyalgia on the application, even though I hadn’t started the medication yet (which, if it helped, would help confirm the diagnosis). She agreed and said that I should also put arthritis and assumed small-fiber neuropathy. Along with cerebral palsy, of course. The first time I qualified for disability, I was relieved but also a little insulted. I felt I could work but wasn’t getting hired. Now, I feel that I actually do qualify, and I really hope the government agrees with me. 

So that is where I am these days. All the big, nerve-racking, (expensive), procedures are over, and I’m left with management and maintenance, and a bit of hope that a new medication might, maybe this time, help a little.

Neuro Follow-Up and Being Manipulated

danielleshanti

I recently had my neurology follow-up with Dr. X to discuss my cervical spine and brain MRIs.

She said my brain looks good and my labs look good. She said the mild disc bulges in my neck are indeed very mild and shouldn’t be causing pain. She does not want to order steroid injections for something so mild, and agree, even though I’ve had constant neck pain since June of 2016. Then she did a quick reassessment of my strength and reflexes and said they are the same (no surprise there; it’s been three months). 

The small lesion in my right brain could have been from any number of things (perhaps even CP), and we don’t have any earlier images to compare it to. It does not explain my burning forearms.

The only thing Dr. X thought it might be is small fiber neuropathy caused by celiac disease. The treatment is to manage the celiac disease through diet, which I’ve obviously already been trying to do since my diagnosis almost five years ago. I could have a skin biopsy done to confirm, but it wouldn’t change treatment, which is only symptom management. I could try gabapentin (didn’t help), physical therapy (didn’t help), or duloxetine (nope; gelatin). I could try over-the-counter lidocaine cream. Okay, sure. It’s a little frustrating to be given options I’ve already tried, but I guess I don’t expect my doctor to actually be familiar with my history. 

Johns Hopkins describes the symptoms of small fiber neuropathy as “pins-and-needles, pricks, tingling and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations.” It doesn’t really sound like what I’m feeling except the burning. It’s more like a deep, painful ache that can feel sharp. Though I have had burning toes as well, since 2014, and small fiber neuropathy often begins in the feet and works its way up.  

Whatever it is, it doesn’t seem like there’s a whole lot more to do. No surprise there. 

Here’s the funny part. Dr. X asked to see me walk. I do not enjoy providing a walking sample in an exam room. There’s about three steps to the door from where I was sitting. But I got up and did it anyway, no trekking poles. As soon as I took two steps, she started saying, “Slow down.” Now, I cannot slow down, as that would take control that I do not possess. I thought she was saying slow down because I was already at the end of the room and she hadn’t had time to really see my gait. But then she said, “Be careful,” and she was up from her stool and taking my arm because she did not want me to fall. Now, English is not her first language, and I think culturally, we’ve got some big differences as well. But she’s a neurologist. The majority of patients in and out of that office were using some kind of mobility aid. Isn’t she familiar with CP gait patterns? Oy. 

When it was time for me to go, I got my poles and stood up, and there she was, trying to take my arm and telling me to be careful. And again, as I went through the door, telling me to be careful. Obviously I understand that this reaction is coming from a place of care. But. I am forty-two years old, and I have come to this exam room on my own using poles. Therefore, the other adult in the room should infer that I know how to handle myself to get safely back to the waiting area, even if I had a wheelchair and/or caregiver out there waiting for me! And she should also know that the words “be careful” have never, ever actually helped anyone, but that they do, in fact, convey loads of condescension. Goodness, thank you, doctor! That’s what I’ve been missing these forty-two years. I have never realized before that I should move with care. No one told me! But now that I know, I shall handle living in my own body much better. (I didn’t say any of that, of course.)

In other news, I’ve now had two osteopathic manipulation appointments at my local hospital. I got this referral by having an office visit with a new doctor when my regular PCP was out. It’s so nice when doctors try to help you without you asking for it. The appointment had nothing to do with CP or chronic pain, but I did mention those things. This new doctor gave me some new options, ones that I hadn’t known existed. My PCP has been my doctor since 2012 and has seen me for every new chronic pain that has come up, but she’s never suggested anything like this. As far as insurance coverage, osteopathic manipulation counts as a regular office visit and is part of my allotted physical therapy visits, unlike massage therapy, for example, which is not covered. In addition, I get a 40 minute appointment, which means at least 30 minutes of it is actually treatment, unlike with a PT session, which is 30 minutes total. 

The appointment is at the hospital, not at a physical therapy office, but the table inside the exam room is more like a PT table, with a real sheet over the crunchy paper strip.

I lie on my back and get mushed and pushed and pulled on. And I really like it. In the first session, the doctor told me the right side of my ribcage was compressed and that I should lie down flat with my right arm bent over my head to stretch it out. And I should also let my right leg relax outward when I’m lying down. Two positions to work on while lying down? That I can do. I was pretty sore afterward, but other than that, I didn’t notice any difference. 

During the second session, she worked a lot on my right hip, because that’s where a lot of my pain is. Then when she was checking my ribs she lifted my arm and said, “We’ve got to work on your forearms! When they’re tight, they pull your shoulders forward and affect your posture.” Just by touching my arm, she could feel an issue. Yes, they’re tight. Yes, I do try to stretch them. I’ve tried massage and moist heat, and taping and rolling. Nothing I do seems to have any effect. Just that first PT in June of 2020 succeeded in helping. The second PT did the same things, but it didn’t help, and neither did work with a myofascial release therapist. Hence the last three years of trying to figure out what’s going on with my forearms. Is the burning just my nervous system overreacting to extreme tightness? If so, why don’t the muscles let go even a little with stretching and/or other professional intervention? Maybe it’s not small fiber neuropathy at all. 

What if I got a full body, deep-tissue massage under general anesthesia? Doesn’t that sound like a fun experiment for my nervous system? I think it sounds like an excellent idea.  

Danielle Gets a Brain MRI: Brain MRI with Cerebral Palsy

danielleshanti

On the night of April 11th, I had my dreaded brain MRI. The day before, I woke up with a stomach already tense. On the day of, I tried to keep busy and also stay calm. We are having exceptionally beautiful, truly spring-like weather, so I reclined in a lounge chair outside and did a meditation, a yoga nidra, and a tapping session consecutively. 

Yoga nidra is relatively new to me. It’s like a compassionate body scan, which I love, but it includes having an intention in mind and is a little more in-depth. You listen to a calming voice telling you to notice the tip of your tongue, your teeth and gums, the inside of your right cheek, the inside of your left cheek…. All through the body, each toe and finger. Then hemispheres of the body and brain. It’s interesting and takes a lot of focus and concentration. Which is exactly the point, to be grounded in the present moment and in your body. I really recommend trying it; there are lots online, and they vary in length. Here’s one I like.

As the afternoon slid closer and closer to evening, I kept imagining going into the MRI machine with the coil over my face. I didn’t know how close it would be to my face, or how close the coil would be to touching the inside walls of the machine, and I was very anxious. I didn’t feel stomach-twisty nervous, but very quiet and subdued. I didn’t know if all my nervous-system-calming prep work had helped at all. 

When I’d gotten my c-spine MRI last month, the tech told me that I should use “the mobile unit” for the brain, because it’s newer and has more “bells and whistles.” I did indeed get scheduled for the mobile unit. I hoped that the bells and whistles included headphones with which I could choose music to listen to.

Walking into a nearly empty hospital at 7:30pm is weird. But nicer than walking into a crowded hospital. We got to the room to check in, and a sign outside instructed us to go downstairs. Did that. Then the nurse (?) came and took us back upstairs, through the first darkened room, past the sign outside it, and down the length of the entire hallway. There my husband sat while I was escorted through some doors and then through doors to the outside, where, in a parking lot two “mobile” MRI units sat. They had some very solid ramps leading up to them, and I assume they are no longer mobile. They are big metal boxes that remind me of blood donation vans, but way bigger.

In a room the size of a small shower stall, I had to get undressed (except socks and underwear) and put on paper shorts and a gown. The chair took up 85% of the space, and when I lifted one leg onto the other knee to remove shoes and pants, there was no longer any room to complete the maneuver. Fun.

Too soon, I was led past the tech area and into the room with the machine. This one was close enough to the floor that I could sit on the bed part/get myself onto it without needing a stepstool to be brought over. I explained that I have cerebral palsy and have very strong reflexes in response to loud noises. Weight on my legs helps. They didn’t have additional weight in the form of blankets. The nurse put the bolster under my calves, and the tech guy strapped my legs down. A little too tightly. Once he loosened it a bit, I figured it wasn’t as comfortable as a weighted blanket–type sensation, but that it would help overall. Earplugs in. Then he put cushioned blocks on either side of my head to hold it in place. And without a word, he placed the coil next. 

The coil was over my face, the emergency squeeze ball was in my hand, and I was heading into the tube. As far as I could tell from my vantage point, the face coil was similar to the one below, but without the little screen attached over it. 

I was so relieved not to feel panic welling up within. The coil was a manageable distance from my face. With gentle pressure on both sides of my head, and a warm blanket over me, moving into the tube I felt almost…cozy? If it hadn’t been for the upcoming prolonged and unpredictable loud noises, I would have felt just fine in there. Because of the nearness of the single bar up the middle of the coil, I had to close one eye or the other to have an unobstructed view of the inside of the machine, so this time, I felt calmer keeping my eyes closed. (In my previous experiences, when I closed my eyes, my mind raced more and I felt closer to panic.)

Just like getting through last month’s cervical spine MRI, I won’t say this experience was easy. But it was easier than last time and the time before that. I was surprised to be able to think, “I’m doing this and I am okay.” The noise was still too much, and felt neverending, and I did still have images of myself breaking free of the enforced stillness and getting out, but though my mind had those thoughts and impulses, I was able to resist them and breathe through it.

The cushioned blocks holding my head still really helped me feel more secure and calm, rather than restrained as one might imagine. I was able to relax into them rather than holding myself rigid as I would without them. If I ever have to have another MRI, no matter the body part, I think I will ask for them, if they can be used without the face coil. Maybe I should try sleeping with something like that. I’m not able to sleep on my back because I feel like I have to hold my head up, but switching sides throughout the night means I wake up each time.

I came out for the contrast injection, not allowed to move at all, and then went back in for three more pictures, about ten minutes. I only heard one break in the barrage of sound, so I thought I had one more picture to go when instead, the tech appeared in my peripheral vision and I was set free. I had survived. 

When I made it back into the building, I told my husband with surprise, a lot of relief, and a little pride, “That was my best one.” 

The next day, I felt happy. I had a bit more energy than usual, and I just felt better. Happy. All the pain was absolutely still there: throat, forearms, hip, back, neck and shoulders, but I had a bit of energy anyway. I was happy anyway. I was looking forward to taking a walk rather than positively forcing myself to go because I know I should. 

I thought, well if I could feel like this every day, then I could totally “accept and surrender” and live with the pain and still feel like I was living rather than existing. That’s what The Gupta Program’s goal is–if you can make it to that state, where your nervous system is feeling safe and good, then maybe it’ll stop sending all these unnecessary danger/pain signals. I don’t know what the change was, and it only lasted for that day. Was it the sheer relief of making it through that dreaded MRI? Did I manage to get my brain a boost of the feel-good chemicals? Maybe that boost is where my brain is supposed to be at, and I need to correct a chemical imbalance… It’s not the first time I’ve had that thought. I had a similar (but even more extreme) experience several years ago, where, for one day, I was a better version of myself. My brain felt clearer. I was happy. When I worked with a group of rowdy students, I was patient without having to make myself respond in a patient way. I realized with atonishment that the kid who usually tried my patience was not having a particularly good day; it was I who was having a good day. I understood that people who were able to be upbeat and energetic in the face of a classroom full of kids must feel like this most days. They operate at a higher level of aliveness that I have only glimpsed. 

So–what’s going on in my brain? Have I got lesions or whatever else the neurologist was looking for? Here are the results:

FINDINGS: 

Brain: No evidence of hemorrhage, mass, shift, or extra axial fluid collection. No restricted diffusion. The ventricles are normal in size and morphology. A focus of abnormal T2/FLAIR signal hyperintensity in the right periventricular white matter, with differential remote sequelae of periventricular leukomalacia, migraines, posttraumatic, or less likely inflammatory causes. Flow voids at the skull base are preserved. There is no abnormal enhancement. 

Bones and soft tissues: There is a reniform-shaped T2 hyperintense lesion located immediately posterior to the left parotid gland, measuring up to 8 mm and demonstrating restricted diffusion and enhancement, likely a benign lymph node.

The note from the doctor says the “small white matter lesion in right brain” is unlikely to cause my symptoms. It’s a nonspecific finding that could be “related to headache, prior injury, et al.” Dr. X does not mention anything about the thing that is “likely a benign lymph node.” (Looked it up and the parotid gland is a salivary gland just in front of the ear.) Dr. X seems unconcerned and I was asked to schedule a follow up, which is not available until September.

So, again, I am left with, well, you’ve got hyperreflexia that suggests things that we have now ruled out, as far as spinal compression or brain lesions. Okay then. No one’s saying it could be a CP thing that I just wasn’t aware of until now. (These are upper body reflexes, and officially my CP affects my lower body.) 

I’ve been through so many information-gathering appointments, without any revelations to show for it.

Such is life.

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

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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!

danielleshanti

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!

Wonder of Wonders

danielleshanti

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.