Rachel is a totally sweet girl that I ran across a while back. I love following her on twitter. Oddly enough I discovered that she actually lives in my town and goes to the same college I do… However, we’ve not yet had the pleasure of meeting (well it would be my pleasure, I’m not sure if it would be hers).
– Update – We finally ran into each other on campus. She’s just as sweet and funny in person!
When were you diagnosed? How old were you at the time?
I became sick as a senior in high school in 2008, when I was 17. I was diagnosed when I was 18, about half a year later.
What lead up to your diagnosis?
My Dysautonomia presented itself first. That started with episodes where I would randomly pass out. Eventually, other syndromes started to come out and I noticed that I would also randomly be in a lot of pain but it wouldn’t seem to be caused by anything in particular.
Were you working at the time?
Yes, full time high school student and part time worker. I was in the healthcare academy at school which meant that I would spend half the school day out in healthcare facilities like hospitals, shadowing healthcare professionals, and the rest of the day would be spent in classes. I was also working as a hostess in a local chain restaurant at the time.
What was your family life like?
I lived with my mom and her 2 dogs at the time. The dogs had very good bedside manner.
How did your family initially handle your illness?
It was hard, I think, to watch me be so sick because I had been so active before. My mom was really supportive and drove me around when I became unable to drive and do other “normal” things.
How has your family/ work situation changed since Fibromyalgia entered your life?
Since then, I’ve slowly meandered through college and part of that was learning how to do things on my own. That was really difficult because on the really bad pain days, I don’t want to do anything. But the cat needs to be fed and the trash needs to be taken out. When there’s life to do, you have to get out of bed and do it. Today, I think that’s a good thing. But ask me in the middle of a flare up and I’ll probably cuss you out.
What do you feel is the most challenging aspect of Fibro?
Not being able to do anything about the pain when it’s at its worst. I hate just having to sit there and be in pain – just sitting there and letting it happen is the worst.
[Tweet “I hate having to just sit there and be in pain, unable to do anything about it. via @rickit”]
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
We’re working on that right now. Like I said, I was diagnosed with Dysautonomia originally, but we’re kind of back to the drawing board as far as diagnoses go. I have a myriad of other symptoms and they negatively impact the Fibromyalgia. Everything seems to feed off of each other.
What other symptoms started showing up?
My new symptoms involve weird spells of unconsciousness that are different from the normal bouts of passing out that I’m so used to with the Dysautonomia. I can be zonked out for, like, 48 hours in a weird, drunken state and not really know what’s going on.
Also some of the other pains have multiplied or changed. Most symptoms seem to be progressing and getting worse instead of better.
What (if anything) have you found/ done that has improved your symptoms?
Not a lot. I’ve tried so many different things, am still trying things, and will continue to try things. Watching Golden Girls mini marathons seems to be about as close to a cure as I can find.
[Tweet “Watching Golden Girls mini marathons seems to be about as close to a cure as I can find. @rickit”]
What is the best advice you’ve received about Fibromyalgia?
To try not to overstress myself. If there’s something small that I can let go, just let it go.
[Tweet “If there’s something small that I can let go, just let it go. via @rickit”]
What made you want to blog about your health issues?
I saw other people doing it and it seemed like a good way to express myself. I’m pretty outspoken and outgoing but, at the time, I was in bed a lot. So I used the tools I had at my disposal in 2011 to try and maintain the personality that I’d cultivated for the past 21 years.
What was the worst advice that you followed?
I was told that anything that was good for poison ivy was good for Fibromyalgia. I didn’t follow that advice; I just found it interesting. And weird.
What is one thing you’ve learned about yourself since your diagnosis?
I’ve learned that I can spell so many different medical words that I didn’t even know existed. Fibromyalgia? Dysautonomia? Wow.
Be sure to check out Rachel on twitter. You’ll see she has a great sense of humor, which is something we all need to hang on to.
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