You can say after reading some of my old records that my infant years were filled with sniffles, cold, ear infections, eye infections and herpes sores.
I saw and met my immunologist when I was roughly around 4 almost 5 years old and it's funny that when I talk to my mom about the beginning she will always say that my dad considered every doctors as quacks. He was so against doctors and still is to this day, but even with persistent from my family doctor and my immunologist it was felt best to keep a close eye on me. All because dad wouldn't budge on doing anything because he believed that my MMR vaccine was what had cause me to develop what I have now. But also because I was his little girl.
My school age years I've fought many pneumonia during the winter seasons, I'd probably fought 3 to 5 pneumonia a year and it's part of the reasons why my lungs are not as great as they should be. It got to a point where everything changed for me in 3rd grade, I got way too sick and started my first IVIG treatments.
3rd grade was a hard transition for me and it would be for anyone at that age who all of the sudden now has to start doing routine therapy and for school it was even harder. Many of the kids didn't understand why I was absent all the time and even when we all started Middle school there were still some kids that pick on me because I had a "Disease". A disease that they thought they could catch, if you ever heard about the Ryan White story the boy with AIDS you can say my experiences were similar or I understood on a emotional level on how Ryan felt.
Now what did I do as far what provided me peace and a sense of mind was Art and Bowling. Those two were something that I've use as a get away. I was selective with friends and still is to this day but now I've seen and know who to consider as my true friends.
My adolescent years everything was routine, but I starting feeling more comfortable about my conditions and accepting the fact was tough to swallow for most 8/9 years old. When did I really truly accept it? I honesty think I've accepted it when I started high school even though it been five or six years since starting. I've even invited so friends to come hang with during during my 8 hours yes! EIGHT HOURS to compete my infusions.
At this age I wasn't facing tough times like I was a few years back but you can say I had my ups and my downs. There's been days and time where we would have to push my infusion date early because my doctor was concern about my hemoglobin, there's been times where I had to do an infusion a day early because we didn't want to risk my hemoglobin to drop any lower and doing my infusion bump up my hemoglobin.
I'd even underwent a blood transfusion because I was so low in the 4-5 range and spent my time at children's in Minnesota. I remembered partly of that event, we drove to the cities towards at night because it was urgent that we get me treated right away and when my immunologist list instructed my parents to have the doctors call him ASAP when I walked in,because we didn't want to expose me to any other type of sickness, they were kind of stunned at the fast pace we needed to go but I was quickly put my room and then we had to type my blood but the problem was giving me blood. Since I was low my antigens in my cells were bad and we needed to now type and cross match the blood. I had hardly ate the past 24 hours since I didn't have much of an appetite but as soon I got my blood transfusion I wanted food and started to get color because I was getting blood. I think I stay there for a few days and I think during that time I also discover Galxicia the game.
In 2000 I had my port put in after the past six months getting and IV access because harder and my veins were getting bad. To This day I still have that same port :-).
Of course I've dealt with cellulitis in my eyes both of them, I'm already partly blind in my left eye because of a cornea scar I had from the herpes virus when I was 1 &1/2 - 2 years old that attacks many people but commonly most people are able to fight it off. I didn't not, so I don't see out of my left eye hardly at all.
Then during my sphomore year, I tried Rituxan either when I was a freshmen in High School or Sophmore but unfortunate I ended the treatment because I kept getting more sick and not seeing results. I would miss school because I was too tired so for all my Evans Syndrome crew I'm glad it works for the most of you and you could say that it's sad it didn't work for me but I truly think that because I started IVIG five years prior that it may have disway any mishaps related to Evans. No it doesn't mean I'm in remission, it just means in my definition that Evan wasn't presenting its ugly head.
I will always have Evans, it's a part of me and its a part of you as well.
I'm going to go onto the second post which I'll link here. 25th Birthday Part Two
Then during my sphomore year, I tried Rituxan either when I was a freshmen in High School or Sophmore but unfortunate I ended the treatment because I kept getting more sick and not seeing results. I would miss school because I was too tired so for all my Evans Syndrome crew I'm glad it works for the most of you and you could say that it's sad it didn't work for me but I truly think that because I started IVIG five years prior that it may have disway any mishaps related to Evans. No it doesn't mean I'm in remission, it just means in my definition that Evan wasn't presenting its ugly head.
I will always have Evans, it's a part of me and its a part of you as well.
I'm going to go onto the second post which I'll link here. 25th Birthday Part Two
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