Getting up to speed.

I’m Jill. You might know me from high school. Or college. Or facebook. Or youtube. If so, you’ve probably heard me talk at one time or another about various health issues I’ve got going on. I wanted to keep a youtube vlog of everything going on, but I just do not have the energy to put into it right now, and thought in the meantime, writing about it seems a lot easier to keep up with.

My health adventure started when I was about 12. I saw various doctors with my main complaints being unusual fatigue and catching a lot more colds than the average kid. I was shuffled around and heard the “teenagers sleep a lot” thing for a while until I went to an Endocrinologist. He determined I have Addison’s Disease, and I needed to be on steroid replacements. I was 15 by then, and more than thrilled to finally be diagnosed. In those 3 years of mystery, I had a really hard time in school. Teachers just assumed I was lazy and didn’t want to do the work, so they had it out for me. I even got the “all in your head” speech from a teacher when I tried to explain that I had a health issue but didn’t know what it was yet. It’s ok though, not too long ago I sent him an email explaining my diagnoses, and telling him I hope he treats other students with more respect than he treated me. Anyhoo, the remainder of my high school career was finished out with independent study, it allowed me time to rest when I needed to, and I didn’t have to be exposed to all those school germs. I was incredibly thankful for this program. My senior year, I decided to go back for 2 classes on campus so I could participate in senior activities. Prom was stupid but I’m glad I went so I won’t always wonder about it.

The first 2 years of college were difficult, but I managed. At first I attempted to keep a full-time schedule, but halfway through the semester I dropped 2 classes because I was too tired to keep up with the work. Things gradually got worse, and after those 2 years I wasn’t able to attend at all.

All that time I just assumed it was the Addison’s. But my Endo assured me I shouldn’t be feeling this way. That was entirely confusing to me, but I shrugged. It occurred to me that something else could be going on with my body. I visited a rheumatologist to talk about Fibromyalgia, and that became my new diagnosis. I was satisfied with it, until a year later I started having nerve damage in my feet. I realized my rheumatologist at the time had overlooked any other possible diseases and had just given me a diagnosis to get rid of me. She then came up with a Lupus diagnosis but insisted it was “inactive”….whatever that means. She was just covering her ass. I was having a terrible experience with this doctor, as were other patients,  I found out via Google. I was then referred to a new rheumatologist by my Endo, who would change the way I see things.

Yes, I did in fact have Lupus. But the new rheumy said that the reason I felt so horrible was because the previous Doc wasn’t treating me. She was positive she could get me back on track. We’ve talked about different medicines to try, and she ordered an MRI just to be sure the Lupus wasn’t attacking my brain. She offered Benlysta, a revolutionary new drug for Lupus, the first one approved JUST for Lupus in 50-something years.

I went to get the MRI. What a terrible machine to be stuck in. I’m not claustrophobic, but damn that thing is LOUD. The part I hated the most though was having my head strapped in. That made me a little nuts. I think if I ever need an MRI again I want some xanax or something, because having my head strapped in caused me to have a delayed panic attack when I got home. No bueno.

A week or so went by, and I made an appointment with my GP to talk about my MRI. The results concluded that I did not have any Lupus involvement in my brain. YAY!

There was something else though. Something unrelated to my other diagnoses. They found I have Chiari Malformation, 7mm. I have to say, I was not at all surprised by this, because I had been googling some of my symptoms about 6 months prior and found some information on CM, so I knew what it was, I just never thought to pursue it. I don’t want to run into the doctor every 5 minutes with something I googled (I predicted the Lupus via google as well)

This would explain my inability to concentrate. My crazy one-sided tension headaches. The pain in my Trigeminal Nerve. The reason I misjudge where the wall or door-frame is and walk right into it. The reason why I trip up the stairs. The reason why I forget what the fuck I’m talking about mid-sentence, and why I can’t remember words. The reason why I’ve been studying Japanese for 2 years but still have a hard time speaking it out loud. The reason why I’ve been playing guitar for 10 years but still can’t get through a whole song without fucking it up. The reason I get headaches at movie theaters. The reason I am light sensitive. The reason why coughing, sneezing, yawning, singing, and the wind blowing all give me a headache. The reason why my neck and upper back are always in a knot.

It’s hard to know that you might have another disease when you already have a disease, because you tend to blame the disease you’ve already been diagnosed with for all the weird things going on. I blamed ALL of this on the Addison’s. But when things started to go downhill, that’s when I realized something just wasn’t right.


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