Thursday, June 6, 2013

The fighter in me

   Somewhere between my first infusion of Orencia  & my second (planned but not done), I developed a deep, nasty cough. Since I don't go out much & when I do, I am very cautious, I believe it was the first infusion that brought on the cough. Like many infusion, probably all infusion drugs, Orencia will compromise the immune system. And with having systemic lupus & the other diseases it gave me, my immune system is already compromised. Hence, the cough developed. Since I am being treated by a pulmonary doctor already, I called his office for an appointment. I've had to wait about 2 weeks for that but, I have no choice. I see him this coming Monday and hopefully he'll figure it out. I also will be getting back 2 diagnostic test results. One is a CT scan that I took last month and the other is a pulmonary function test (PFT) that I am taking tomorrow. I'm always waiting for results or taking some type of test, it's become such a big part of my life that I'm used to it. Not that I'm happy about it. I dream of a time when I don't have to see doctors so often or be stuck with needles or sit behind some type of machine for some test. I've had so many xrays in my life that I think late at night I must glow. But, they are all for a reason.

   I remember one of the first times I ever had a diagnostic test done. I was around 3 or 4 years old. I had some tests at a younger age but, I don't remember them. This test was an EEG to rule out seizures. From the time I was 10 months old til I was about 12 and then again in my late 20's I had suffered from seizures. The first set when I was a child were simple seizure where I would just faint. And when I woke up I didn't know what had happen. That type of seizure I had first when I was 10 months old. My father tells the story that I was trying to walk and fell down. When he went to help me, I passed out. I didn't move or shake and my eyes stayed closed. Those seizures were diagnosed as Epilepsy when I was around 7 years old. And then I began my first journey with medication to control them. I also had restrictions at home and school. My doctor told my parents that needed more rest that the average child. And that I was not allow to participate in gym at school. The rest was easy, not allowing to participate in gym was the hard one. I wished that they would have taken me to another classroom and allowed me to read or color. Or even to the school library while my class was at gym. Or even better in our Art class to create Art. I loved Art class as a children. I still love creating. But no, I had to sit and watch my classmates. When I lived in Chicago, that wasn't much trouble. I remember my gym teachers being sweet about it. I remember them letting me help them with small tasks during class. But, when I was 9 my family & I moved to a northwest suburb of Chicago. It was there that being banned from gym was horrible. The gym teacher was a bully and very mean to me. He treated me terribly because I was unable to participate in his precious class. Years later I saw that teacher while waiting outside my former grade school ( I was picking my neighbor up from school that day). He forgot who I was and how he tormented me and proceeded to make a pass at me. How horrible! But, I stood my ground and reminded him who I was and that he used to be my teacher. Yuck! The memory of that to this day makes me want to vomit! By the time I was out of grade school my seizures had stopped. We were told that I must of grew out of them. I was happy, no more crazy fainting spells, no more medications and best of all, I was allowed to take gym. Little did I know that not being able to take gym was a blessing in disguise. I hated it! But, I took my 2 years of regular gym which bored me to tears. And then my junior and senior years I took dance class. That was fun!

   Years went by and I was in my late 20's when I started having weird seizures that made my body shake and that I was fully conscious of. Those were horrible! More medications and more doctors and then in the beginning of 2000, I went to epilepsy specialist. I had more testing and a stay in a hospital. And he ruled out the epilepsy saying they were pseudo seizures that were made worse by the medications. I was taken off the anti-seizure meds and the pseudo seizures stopped. Years later when I was in my early 40's my lupus symptoms came back after a brief spell in my mid 20's and you know the rest.


   I've been through a lot in my life with poor health. But, I can honestly say that because of the most special people in my life, I wouldn't trade my life with anyone else in the world, past or present. I guess since I was a 10 month old baby I was and will always be a fighter.

*taken when I was around 1 years old with my precious Mama.

Til next time...