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One year ago today

Today is my one year diseaseversary!

One year ago today, I was called into the restaurant because none of my family's employees showed up for work. I went in, even though I was feeling a little bit sick and weird. I had a mild tingle in my hands and feet. By the afternoon, the tingle was much worse and had moved up my arms. I had a doctor's appointment at 4:45 to have a wart removed. I told the PA that I wasn't feeling well and that I had a weird tingle in my arms and feet. He decided that, because I saw a rheumatologist for the "arthritis" (more on that some other time) in my foot, it was probably related and I should make an appointment with my rheumatologist. He removed the wart and wished me good luck with my arthritis.

By that evening, the tingle turned into pins-and-needles and a heavy pain settled over me, like I was being crushed by an elephant. I was lying on the couch with the TV on, trying not to let anyone know that I was crying, when my husband noticed and asked what was wrong. I started sobbing and said that it hurt so much and wouldn't stop. We went to the ER for the first of seven visits there, trying to make someone, anyone, pay attention to the fact that there was something wrong with me. They sent me home with some Vicodin and directions to call my rheumatologist in the morning. The Vicodin didn't do anything for the pain, but at least it put me to sleep for a few hours.

And that was the end of my first day with Guillain-Barre Syndrome, an immunological, neurological disease that has absolutely nothing to do with rheumatology. It's been one year of hell -- of agonizing pain, of four months in the hospital, of no financial income and no creative output, of a life suspended. I'm not yet cured of the effects of the disease, but I'm better than I was before, and that's something. I've at least started thinking about resuming my life.

In honor of my diseaseversary, please tell me any ways you, your life or your situation have changed in the past year. I'm slowly working my way through your journals, but in the mean time, I'd love to know what you feel have been significant changes.

Comments

uhleanuh
Aug. 26th, 2009 12:55 am (UTC)
In the last year Todd and I got married in Florida, I finally reached my mental breaking point and spent a month in an intensive outpatient treatment program that was absolutely life changing for me. They diagnosed me with I finally believe to be an accurate diagnosis and have me on a combination of meds that I believe have changed me completely for the better.

I feel like a different person, and people have noticed. Also Todd and I decided that I would take some time off work after treatment and in that decision decided that I would not go back to work and would focus on school and go from part time to full time and pursue my forensic nursing degree.

and thats where we are today.

So in short, i believe that in the last year i learned a life changing lesson - even when you cant see it and you're feeling around on your hands and knees in blackness, there actually is light at the end of the tunnel if you dont give up.

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