A friend came over and did some emergency bodywork, releasing my coxxygeal muscles (one of the pelvic floor muscles) and calmed the shakiness down. The next day while lying on some soft therapy balls, I started having reciprocal spasms-- they would pull me in the direction the muscle had been pulling me in, then release, leaving that muscle released. This happened all over my ENTIRE body. When the major part was over, my hip flexors had totally relased, a lot of muscles had released-- but I had no stability in my body. The major spasms continued for several days.
It seemed like I had lost all my strength. Just trying to do the smallest exercise like lifting my knee while lying down would start off a spasm. I went to the doctor, but she had no idea. You see, I didn't have any pain. I got sent off with a bottle of muscle relaxers and no advice. Both the doctor I had talked to on the phone before the appointment and the doctor I saw did not listen to what I was saying, and the fact that I had no pain seemed to completely confound them.
For several weeks, I didn't know what was wrong with me. I did notice that in the evening and when I would feel like my shoulders were tight was when my hands felt the most lack of motor control. To say this was scary would be an understatement. Nothing made sense; the symptoms seemed like the onset of maybe MS or Parkinson's but then when I would really get into it, nothing matched up. All my symptoms felt like they were being caused by something muscular, not neurological.
Finally I went to see Melanie Byford-Young at Pacific Northwest Pilates, who is an incredible genius at diagnosing the human body. The working hypothesis is T-4 Syndrome, (http://www.physio-pedia.com/T4_Syndrome)
affecting the sympathetic system, coupled with my hypermobility syndrome, possibly Ehlers-Danlos (a connective tissue disorder https://ehlers-danlos.com/what-is-eds/
). I also had a pelvic floor disorder. Finally someone was listening to me.
I did just see a neurologist and she confirmed I did not have a neurological disease, which is such a relief.
Basically my body had fallen apart and it didn't know how to work properly. My T4-5 rib rings are laterally shifted and rotated-- essentially out of whack. I discovered very quickly that I could not do Pilates on my own anymore (or any exercise really) because it would send my whole body haywire, at one point so badly I could not drive home and had to have my partner pick me up and I got my car later.) Thanks to Melanie, Pacific Northwest Pilates, and Studio Blue, and my own kinesthetic knowlege (I am a Pilates instructor at Studio Blue) I was able to put together a good team consisting of a physical therapist (Christina Trautmann of Element Wellness) who was also a pelvic floor specialist, experienced rehabilitation Pilates Instructors who (Emily Keane, Janet Nordlund, Anna Marra, and Melanie Byford-Young of Pacific Northwest Pilates), which later expanded to include an orthopedic acupuncturist (Ian Wilkinson from Therapeutic Associates Physical Therapy), and most recently a massage therapist, Carissa Conner (Studio Blue).
I have health insurance, but it's Kaiser, and it does not cover the above rehab, which is what I need. The rehab is working-- when I started we mostly worked on breathing because the smallest movement would fatigue me quickly. I still have motor control issues with my hands and shakiness when my upper body tightens, or, most recently, a rib slipping, and I still can't do Pilates or much on my own, but I have come so, so far, and my body is very slowly learning to work again. Every week I am a little stronger. I'm 40 or 50% there...from zero.
The rehab is WORKING, which I am so grateful for. However, as it's all out of pocket, I am paying up to $400 a week, and my credit cards are fast reaching their limit. I make about $12-1300 a month, and that just isn't enough to pay my bills as well as rehab. I can't stop; I'm doing what my body needs, but that financial stress is not helping it. I really hate asking for money. I never thought I would have to do this, but I am asking for donations for a goal of $5000. $5000 will cover my rehab for the next three months and then I can use my earnings to start to pay off the debt I have already incurred.
It would mean the world to me, and I really believe would help the recovery process to not have such a financial stress load constantly. I can't stop, because it's working, and I want to be able to someday do the things I enjoy, like Pilates and rock climbing, that I really can't now. Any little bit would help.
- Diana Rozenshteyn
- Kathleen Donohue
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