Nanna Banana holding daddy's hand

Nanna Banana holding daddy's hand
Nanna Banana holding daddy's hand

My Lupus Story

I was always a child who just "didn't feel good". I didn't miss a lot of school, but I did seem to sleep more than other kids. Even I noticed it as a kid. I was just tired.
When I became a teenager, I did well in school, but things weren't much better. I was still tired, and I would get horrible headaches that would make me sick to my stomach. Anything sensory related would push me over the edge. The only thing that I could find to help them was to take 400 mg ibuprofen and 2 tylenol. I know, you aren't supposed to mix things like that, but for some reason (and no, I am not advocating it by any means) it worked for me, If I lay in a totally dark room with no sound, movement, or funny smells.
When i was a senior in high school, I would have these miniature phases of blacking out, and I became clumsy. I didn't know what was wrong, but it didn't seem like others had the same problems I did.
I ran the battery of tests with the doctors. They determined that I did have issues with my thyroid, but that was all they could find. I was told that it was psychosomatic, and that I was extremely depressed because of my father passing away when I was 10.
Yes, I was heart-broken over that, but not to the point they were claiming. and I believe that telling me I was depressed was actually MAKING me depressed.  I knew there was more to it than that.

the summer following my graduation I went downtown with a friend of mine and we slept along the 24th of July parade route. When I woke up, (after only sleeping a few hours anyway) my hands were so incredibly sore and painful to move. Shortly after that, I got a job as a shoe salesperson. When I would get home from work, my knees would be so painful that I could barely make it to the car.
My friend and I decided to take a mini-trip to Idaho to see her cousins. When I came home, both of my eyes were incredibly blood shot and painful. I went to the pharmacy to see what they could suggest, and their suggestion was to see an eye doctor ASAP, I did, and my eye doctor finally pointed me in the right direction and suggested that in my eye was something that usually only shows up in patients with Lupus. So he referred me to a rheumatologist who began my treatment.
My rhuematologist was Dr. WP Knibbe. (he is now in Boise). To him, I owe my life.
At the time I was diagnosed, I had no known organ involvement, but was having some very different issues. we ran the gambit of medications, tweaking etc.  until we found the correct one (or 5)  that worked for me.
I spent time in and out of hospitals once for nearly a month. During this stay, I was so incredibly sick that they had called in my family for last rights. But, I knew I wasn't going anywhere.
I recovered from that, but began having grand-mal seizures.
I am blessed because I have something that many with epilepsy do not have, and that is I have a warning. I call it a "greyness". It begins with a slight dizziness and a tickle in my stomach. over about 5 minutes things begin to fade to grey and so does sound. not like white noise, but more like grey noise. kind of underwater sounding. then all goes black and I am out.
I have to say that having seizures is much more painful on the people watching the seizure than the ones having them.
The reality is, you feel dizzy, your surroundings fade. the next thing you know, you wake up, are very tired, but have no memory of what happened. It is indeed much harder on the people watching.
However, I have also had some pretty severe injuries caused by seizures. A broken eye socket, a tongue chewed to hamburger, a sliced finger, and various other bumps bruises, scars and scrapes,
I have learned that if i heed to the warning, sometimes it is at the most inconvenient time, but I know I have to listen to my body. I believe that the blackout feeling that I had in high school was related to the seizures in some way.
I have continued to be on small doses of medication to control my lupus, and will forever be on medication to control my seizures. But I am doing well, I am not in remission, but I am stable.

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