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The Beginning

Posted Mar 04 2011 9:52pm
I'll start by introducing myself. I apologize for the lengthiness of this post. I promise that my other posts won't be this long.

I've heard that blogging is a good way for people with chronic illnesses (or the loved ones of people with chronic illnesses) to cope, to bond, and to have some form of release from everyday life. So...that's what I'm looking to do. :)

I'm Rachel and I'm from Huntsville, Alabama.
I first noticed problems a few months before I graduated in 2008. I was in the Healthcare Sciences class at my high school, which meant that I spent half of the school day at hospitals, shadowing different healthcare workers. I was watching a procedure one day when suddenly, I had to leave the room and sit down because my face was blue and I felt like I was going to pass out. The nurses decided that I was "grossed out." But I grew up with two older brothers; it's impossible to gross me out. So I just kept passing out or nearly passing out on a daily basis. My health was declining; I barely ate anything. When I would eat something, I would just get really dizzy and be "drunk" for awhile. It happened at the senior picnic and one of my friends had to check out of school and drive me home. I hurt all over. I had to stop driving, and we weren't sure if I was going to make it through graduation. But I did. And that summer was the hardest summer of my life.

I lost a lot of weight and I was almost always unconscious. I was in and out of the hospital a few times, but they always just told me I was dehydrated. The thing was, I was drinking as much as I possibly could. I went to doctor after doctor: Endocrinologist, Gastroenterologist, Neurologist, etc. No one could figure out what was wrong. I could barely stand. I had my own wheelchair. I didn't see any friends and I spend most of my time in bed. My resting heart rate (which should be around 75 bpm) would be in the mid to upper 100s. Finally, I went to see a Cardiologist. He was my saving grace. He told me right away that I probably had Dysautonomia. He said it so simply, like he couldn't believe that no one else had diagnosed me yet. It was such a relief to finally be able to put a name with the pains and the fainting.

Dysautonomia just meant that my autonomic nervous system didn't work correctly. Among other issues - when I'd stand up, my blood would pool inappropriately in my legs and feet. My blood pressure would plummet and my heart rate would skyrocket. But even when I'd sit back down, my heart rate would not return to normal. My Cardiologist sent me to a Dysautonomia Specialist in Birmingham. She officially diagnosed me with a tilt-table test, which is an awful experience for the first time Dysautonomia patient. They strapped me to a table lying down, and the table was slowly raised. It'd be harmless to someone with a normal autonomic system, but for people with Dysautonomia, it's terrible.

I was put on different medications and was taking more than 10 medicines a day. I thought that Dysautonomia was the worst thing that ever happened to me. I was supposed to attend Auburn University in fall 2008, but I was too bedridden to even consider doing that anymore. So I stayed home. It wasn't until recently that I returned to school at our local university. My symptoms had gotten a little bit better - better enough that I could kind of keep up with school.

But then Interstitial Cystitis happened. It all went so fast; I don't even remember what all happened. I kept having different infections that antibiotics couldn't fight off, and I hurt so much. When I wasn't in class, I was permanently attached to my heating pad. So I was sent to a Pelvic Pain Specialist (also in Birmingham). He stuck a scope into my side and took out my appendix, burned off some Endometriosis lesions, found some vericose veins inside of me, and also decided that I had Interstitial Cystitis. It basically means that my bladder is chronically inflamed. It was a relief to be able to give a name to the pain (AGAIN). Only once I was given a short, temporary relief from the pain was I able to fully understand just how much pain I was in. My body had become so used to the constant aching that I thought pain was a normal thing for people to have. Turns out, it's not.

And that's where I am now. I'm on upwards of 17 medicines a day (I don't feel like counting right now, but that sounds right). I'll list what I'm on later. (I'll also list my frequent symptoms of Dysautonomia and Interstitial Cystitis later, as well.) We're on the last leg of trying medications for the IC, and none of them are working very well. I really hope there isn't any more surgery in my future. But if it would help the pain, I would definitely be willing to try it. I rarely have a good day anymore with little pain. I had one wonderful day where the pain was about a 3 on the pain scale of 1 to 10. So now I'm looking for any way possible to make that happen again.
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