my illness, loss, and gain

chapter 1: backstory

When I was a child, I fell ill with viral meningitis. The disease attacked my spine but the damage had gone mostly unnoticed until my 20's.

In 2016, I was finally in enough pain that I was desperate to see a doctor. Through an X-ray, we discovered I had scoliosis that appeared to be progressing slowly. At the same time I was diagnosed with ADD and given adderall because I could not stay awake. After a year, I had lost so much weight that I felt sick and I barely ate. Ever. For anyone who ever wished to be thin it would've been great, but I was tired. I was sick. I had memory trouble.

Last year I decided to see a new doctor who referred me to a neurologist and a neurosurgeon, who discovered via MRI that I had a cyst in my spinal cord. I was diagnosed with Syringomyelia, which is where a cavity forms in the spinal cord sometimes as a result of damage. It is progressive and can eventually cause paralysis, and due to how rare it is no doctor in my state will perform the surgery to drain it. A month after this diagnosis, my genetic testing had also come back positive for Narcolepsy. I was switched to new meds and I struggled for awhile. Though things are improving.

One of the hardest pills to swallow was gaining weight. I had been shamed into thinking I was supposed to only weigh 120lbs, despite being more comfortable and feeling stronger at a higher weight. Through body positivity and getting to know myself, I realized that there was nothing wrong with my little gut and gaining a little weight. In fact, that was what I wanted, but I was letting other people dictate my body type.

I have only gained 10lbs (it's up and down) but I feel so much better. I still use a walker to get around sometimes, but I don't feel half dead like I did before.

I am thankful to have found a community who accepts weight gain. We are conditioned to think it's this terrible thing when really, everyone is different. We deserve to feel comfortable in our skin. I am still working on myself, but this was an important step in my healing process.

As far as my illness goes, one of my daily meals is made up completely of gummy vitamins and medications lol. I am still raising money for surgery out of state. I am remaining hopeful. If there's anything I know to be true it's the fact that I'm strong. Resilient. A warrior. I will survive.
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comments
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wayTooThin 4 months
Have you found a doctor yet who is willing and able to do the surgery?
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otherland78 4 months
I wish you all the best and luck with getting enough money for your operation ...
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woldock 4 months
I am astonished by your story and openess about it! Wish u all the best and that u feel better every day! Kind regards from germany!
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GD84 4 months
You are such a beautiful person smiley
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Do you have a go fund me page?
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sending loves. be strong!
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@soylentlilac

It would be quite a lot of money thanks to living expenses alone. I am doing my best to save what I can. I hope to be able to have the procedure done within the next two years.
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Wow. This is terrible, how much would you have to raise?
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@JRLnew thanks babe! Every day is a battle but getting to lay my head down at the end of it means I won. 😊
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JRLnew 4 months
Wishing you all the best. Stay fierce, brave and strong!