My Story

My health journey begins right after I turned 15. Growing up, everything was pretty normal. I was a competitive swimmer, and spent an insane amount of time in the pool. I applied the same level of devotion to my academics, often biting off more than I could chew.

The year before I turned 15, I got injured. I had had several other sports injuries in the past, so I figured it was no big deal. I put off going to the doctor, if only because I wanted to continue to swim. As a result, I didn’t get X-rays until a few months later. It showed I had a stress fracture in one of my top ribs. I also developed minor scoliosis over that year (curvature of the spine). A few weeks before the shoe dropped and my health problems became considerably worse, I started wearing a soft brace to help correct my scoliosis. It helped considerably, and the dislocating ribs and shoulders stabilized.

On september 11, I had horrible stomach pain. It was localized, and so when we went to the ER, they said I had appendicitis. (Neither my labs nor a CT scan showed any evidence of appendicitis, but it was considered such an easy surgery that we might as well.) I ended up having surgery the next morning, but my stomach pain never went away, and I didn’t seem to get much better.

I felt worse over the next two weeks, and one morning I woke up and felt extremely nauseous and foggy. I came downstairs and collapsed in the kitchen. In the urgent care I was unable to speak, I couldn’t remember my name. The whole left side of my body was difficult to move. They told my mom I’d either had head trauma or a stroke. As it turned out, I’d had neither. Once I’d had a clean CT scan, no one seemed too concerned with the fact that I couldn’t find the words to make clear sentences, that I couldn’t walk or talk. As a the first neurologist I saw said “A lot of little girls get headaches.” I was diagnosed with generalized anxiety disorder, and prescribed an anti-depressant. My life was shattered in those weeks and no one seemed to care enough to put the pieces together. Over the next few months, I continued to deteriorate and continued to be prescribed anti-depressants or anti-psychotics. More diagnoses followed: depression, conversion disorder…they never seemed to fit. My parents found a psychiatrist for me, and shockingly she was the first doctor who believed it wasn’t all in my head. She ordered tests to figure out why I was reacting so badly to antidepressants (it turned out I don’t have the proper enzymes to break them down), and she has continued to be an invaluable asset to my care. She was also the first person who didn’t seem to believe that mental disorders were a completely minor issue.

A few months after I got sick, I ended up seeing a doctor in another city. He said there was no evidence of  my illness being psychological, and diagnosed mast cell activation disorder , dysautonomia, and gastroparesis. I left that appointment with 7 new prescriptions. However, as that doctor wasn’t in my area, he had no power to influence the local care I received. I traveled to see him every month, but the new diagnoses didn’t seem to make much difference with my care at home.

My body’s systems continued to rebel. I couldn’t walk, couldn’t eat. I was in so much pain, I couldn’t focus. I couldn’t handle riding in the car because the vibrations would set off nerve pain. I couldn’t think. I lost my ability to read. When I look at things I’ve written from that time period, it’s like a whole different person was writing them.

The nerve issues continued. Eventually my foot twisted off to the side, and turned purple. I couldn’t move it. I was hospitalized with horrible head pain and a dystonic foot. They diagnosed me with complex regional pain syndrome at my local hospital, and they had the rheumatologist who ran a pain program there come and see me.  He recommended I not do the pain program, because I was not motivated enough to get better.

I stopped being able to do anything. I was living in the brief snatches of time where I was lucid enough to potentially be myself- but they were few and far between. Over the next year, I has repeated hospitalizations at my local hospital. They didn’t help, and in reality probably made things worse. But we were out of options.

In September of 2014, I traveled to Mayo Clinic, hoping for some better answers. They confirmed that I had dysautonomia as we had suspected, but didn’t offer much guidance or support. At this point, I had a PICC line and was receiving most of my hydration that way. I was on high dose steroids and was starving all the time, but I would eat and my stomach would swell until I looked 6 months pregnant.. Eventually, I would throw up. The doctors are Mayo said gastroparesis was a likely possibility, but couldn’t help much. They wanted me to go into their rehab program, which was a month long. However, they wouldn’t let me do it with my PICC line, and wanted to pull me off all my medications. My parents decided I wasn’t stable enough. While we were in minnesota, we visited a neurosurgeon who said I didn’t have chiari malformation as had been suspected, but craniocervical instability. Due to my age (I was 16), he was reluctant to do any sort of surgical intervention. Instead, he suggested a neck brace, which if it helped would confirm the diagnosis.

The neck brace helped. We traveled home. Things looked a little more manageable. A week after arriving home, I passed out after showering (without my neck brace). I hit my head and neck. Within hours, I could no longer keep water down. I was admitted to my local children’s hospital, and would remain there for almost 3 months. You can read about that hospitalization as well as others in the same hospital here.

I emerged, very sick. I had been put on multiple anti-psychotics and couldn’t eat or tolerate tube feeding. My mom and I traveled to Texas mere days after discharge to see another doctor, and while we were there I ended up being admitted to Children’s Memorial Hermann by the ER. My mom and I were shocked at how compassionate everyone was. They actually wanted to help, and had ideas that we had not yet tried. I flew back home, and we discussed coming back if the local doctors continued to fail. It’s no surprise that they did, and so the day after christmas, we flew back to Texas, where I was hospitalized.

My care there was nothing short of amazing. They wanted to do more tests, try different medications and formulas, get pain under control. It was all worlds away from the doctors at home. About a week later, I had a surgical GJ tube and broviac central line placed. (Previously I had had a PICC and an NJ.) I was bridged with TPN, but I was able to come off the TPN and transition onto full J feeds, with the fluid support so I could do IV fluids at home to replace what I wasn’t getting.

I did really well. I started to even be able to eat small amounts. Not very much, and often it made me sick, but I could drain liquids out my G tube, and so my stomach was happier and there was less nausea. Over the next few months as my nutrition improved and energy rose, I started to do more. I walked more, but still had pretty severe neurological symptoms. Eventually, surgery was scheduled with a neurosurgeon in California (where I live). The plan was a C5-C6 fusion. It was a much more complicated surgery than anti pated. (My parents were told maybe an hour, but about 4 1/2 hours in they realized perhaps something was up.) However, it was highly successful. I had some pretty severe post-op complications, but a few days after, I was discharged, straight from the ICU.

That was last august, and in the last year I’ve come pretty far. The surgery was successful, and helped a lot with my symptoms. My horrible headaches are now mostly gone, or very minor.

I had my central line removed in May of 2016, with the plan to be to transition to a port in a week. However, I went into anaphylaxis during the procedure, so we held off on the port. But over the next few weeks, my allergic reactions becoming more severe, my port was placed and it went really well. The reactions didn’t though, and increased in severity and number. My “safe-ish” foods dwindled, and I couldn’t even be around perfume without severe reactions. Eventually, a bad day turned into a bad week, and I ended up in the ER, using multiple epi pens to keep my airway open. I was admitted, and though those two 1/2 weeks weren’t fun, they enabled me to have better management of my mast cell reactions. As of now, I’m on IV antihistamines and steroids, plus several other potent meds that are helping keep the reactions at bay.

And that’s where I am now. Taking on day at a time- and realizing that if I’m waiting around for health, I could be waiting a long time. Life’s too short to wait for things to change, so I’m trying to change what I can, and accommodate for what I can’t. One of my favorite quotes is “Not all those are Lost”. It sums up where I am. I’m just wandering, I’m not lost. And this road is just as beautiful.

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