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Krista's Rehabilitation Fund

$1,715 of $5,000 goal

Raised by 28 people in 19 months
About 3 months ago my left femur drastically internally rotated during an exercise class. Two weeks later, while trying to take a Pilates class, I started getting shaky and my whole left side started going numb. When I went to try to use a foam roller that I thought might help, getting down to the floor initiated a full body spasm. I managed to calm things down enough to finish my work day, but everything had motor control issues; trying to put my key in the lock of my front door was difficult. 

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.
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It's been over a year since I launched this GoFundMe, and I just wanted to give everyone an update.

I stopped advertising, so to speak, this fund, because as much as I needed/need it, the hurricanes of 2017 made me feel like I had no right to be asking for money when I had a roof over my head, electricity, and food and water. Now, of course, there's been another hurricane and people are hurting from that as well.

I've been doing my taxes, and it's a little (a lot) horrifying tallying up all the rehab bills from 2017, so those of you who so generously donated, rest assured it was genuinely helpful!

It's been almost a year and a half since my saga began, and I still find myself needing rehab at the very least once a week-- twice if possible, interspersed with the occasional acupuncture and bodywork appointment. I never thought it would take this long.

Around October started several REALLY shitty months where the neurological aspects of my T-4 Syndrome reared their heads spectacularly. Although my pelvis had stabilized, my ribs had not, and any time they got out of whack, it affected my speech, movement, and brain. I went through many months of brain fog, and I would say I'm 95% back to full brain capacity...there is still a remaining 5% of fog. To be honest, it's hard to remember exactly what was going on during those months, because my body and brain were just being so crazy. I can't explain it because there is literally nothing I can compare it to that anybody has ever experienced. My body just seemed to be in a perpetual state of chaos, and went through several fascial release parties--I've literally felt every myofascial path through the body there is, as well as neural paths.

One night in December I took the tiniest-- and I mean TINY nibble of an edible, in an effort not to take Klonopin to calm things down. It unwound me and made my ribs so hyper mobile that they got all twisted while I was sleeping, and in the morning I couldn't walk, talk, or even sit myself up in bed at one point. Thankfully I knew what I needed, and got Clayton to massage my pelvic floor, which brought back speech and movement, and an emergency session with Melanie at PNW Pilates brought me back to normal. That was one of the very few times I was scared. My body was so reactive that when I got a hair cut, the shampooing of my scalp affected me so much that I had trouble thinking and talking enough to pay and get out of there, and it was about three hours before I was stable enough to drive home.

About five or six months ago, an acupuncture session sent my body so crazy that I had trouble thinking and talking; I met a friend for lunch and was a disaster. As I tried to walk back to my car, my backpack on my shoulders, the wind, the shade, the sun-- all of it blended into neurological craziness, so extreme I can't even begin to try to explain it. But then I felt vertebrae starting to pop back into place. It was six hours before I could drive home.

The next evening, however, I started having the same reciprocal spasms that took my body apart, but this time they were putting my body BACK TOGETHER. Literally overnight I was stronger and less twisted. My nervous system calmed down. It's been steady forward progress since then...and I've lost nearly all my hyper mobility, thank god.

I still can't load my upper body yet, and I still can't take a Pilates class, even a beginner one, but I'm able to do some chest lifts, squats, and lunges-- I can actually do 3 lunges on each leg now. Dan and Wendi at Studio Blue have been absolutely amazing.

That's, believe it or not, an abridged version of everything...but the worst is definitely over, and normal is on the horizon. I cut my own hair when I needed a haircut, though; it felt safer that way.
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Rehab continues to help me make progress- my body is now starting to actually respond to my brain and things are much more integrated. I still have the weird "unwinding" issues, which goes along with shakiness and suddenly super unstable pelvis, but they are less than they used to be. The progress I'm making makes it extra weird when I'm trying to do something in rehab and I just can't, whether it's with my arms or today with my legs-- it's like my body has no clue where to start that movement from.
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For all of those who have donated-- I cannot thank you enough. It is absolutely being put to use-- massage therapist yesterday, rehab pilates today, physical therapy tomorrow, rehab pilates thursday and friday...I'm determined to get my body back to normal! I'm so happy to finally be able to have muscles fire, although when they do at the moment they go from zero to a hundred, which is quite startling!
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So happy that this weekend was better than last weekend. What we work on in rehab keeps changing as my body changes-- at first we couldn't work on my lower body because it would totally throw everything off. Now, we can work on my lower body-- FOUR times last week I did 4 reps of footwork on the reformer, which is huge, especially since I wasn't crazy shaky after. We're going easy on my upper body, since it seems like every time my upper body gets worked on, like massage, it has a reaction. I would say it's a negative reaction but I am getting stronger so I guess it's just how it is right now. The problem is that when I get all shaky and have problems with my hands and feel that blood constriction, it actually affects my ability to speak, which is incredibly annoying, especially when I have to teach a class.
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$1,715 of $5,000 goal

Raised by 28 people in 19 months
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