lil about me , and transfering/splicing previous blogs etc.

    I'm Mary , 22 years old till May 11th so roughly 2 weeks to go . I love animals and deals , couponing, cooking etc. I also have hypertension, history of seizures, a stroke when I was 13, end stage renal failure, severe thrombocytopenia, DVT , hyperthyroidism and more secondary to Systemic Lupus Erythmatosus I will try and touch a little on each later.

I was going to OSU-OKC full time till last year when I discovered I had a blood clot and finished up the semester and passed my finals! (4.0 GPA)  I am VERY proud of my grades perhaps because I am Asian maybe not either way I suppose thats good!

    Health Stuff-
       I was diagnosed with Systemic Lupus Erythmatosus(SLE) at 8  years old. I only remember going to the doctor for yearly shots and when I had really bad contact dermatitis in the folds of my elbows and knees.I remember getting horribly sick when trying to be a "normal" kid although I never told my parents but they did find out as I started having a rash on my face. The rash covered the sides of my nose and down towards my cheeks ( butterfly rash) and it hurt to the touch and burned, think of the worst sunburn you have had rub salt on it and multiply it by 10. My mom took my to my PCP at that time and she tested my for Rocky Mountain Spotted fever an some other labs. I was sent home with an antibiotics prescription and instructed to take it for 2 weeks while the labs came back. My mom got the call about a week before my birthday while I was in the bathroom trying to take my first of many pills and all I could think about was "god , if you are out there please dont let this be Rocky Mountain Spotted Fever , please dont". After my mom got off the phone I was told that I had an appointment at the Children's Hospital; a place my parents dont have fond memories of because of my sister's diagnosis of Acute Lymphoblastic Leukemia when she was 5 years old . She went into remission when she was 10 thankfully .  It was set my appointment towards the end of May at a doctor that I didnt know , I didnt know what for or where really. My dad was supposed to get off work though so it was a big deal as he never did so . My 2nd set of labs done at this appointment and I cried horribly as the phlebotomist could no find my vein repeatedly, it took at least 5 times  and I was to return a few days later to hear the results of something I had yet to comprehend at that time. The doctor was nice as he tried to get me to interact with him by using a Kermit the Frog puppet (he did this for all new patients) and the nurse was sweet and she explained where to go and what was to be expected. I was started on 10mg of Prednisone (steroid) , 250mg of Cellcept (immuosuppressant/chemo) and 200mg plaquenil (antimalarial) .  I hated taking pills and never understood how my dad took his diabetes meds everyday but hoped that if I continued to take them that I wouldn't have what they thought and it would go away like a cold. A weekend later we returned again the trio to see what was in store for my lifetime.
   As I sat there trying not to cry as the adults talked and I could tell by the tone and the facial expressions that it was not good! You know how they say that as one dies they see their life flash before their eyes ... well that sorta happened. I remembered thinking 'would i be able to have kids? would I live? how long etc...' . They of course didnt explain it to me but the nurse was nice enough to offer some "magic cream" which would numb the area that the blood was to be taken from. As a chile who of course didnt like pain from anything especially and so I was delighted with the idea. The "magic cream" was Prilocaine/lidocaine cream that was to be applied topically and let sit with a Tegaderm or saran wrap covering the site for 30mins -1 hr on average.  The nurse drew my labs this time and she got it the 1st time but I could still feel it . She suggested I do it for an hour next time.

    School started shortly as the summer was filled with frequent doctor appointments and medications. My mom had to adapt to me taking meds in the morning by crushing up anything that couldnt come in a liquid form and added water to make it to such. I would still have problems and so she tried giving me pickles after to flush the taste out. It worked for awhile but as school started as much as I tried to remain "normal" I knew inside that Ijust wasnt and it wasnt until 4th grade that I started missing alot more days because of monthly chemo treatments that my teachers were alerted. I hadteachers that tried to fail me because of such and some that were extra mean because of various reasons but some that were really nice too. I stopped going to school Janruary of 5th grade because I got too sick and did a program called homebound , 2 times a week a teacher came to my house for 1-3 hrs to teach me and to make up the classroom time. This continued until 6th grade when my dr decided I would benefit from the social interaction and made me go . That lasted maybe a week and then I got too sick again and honmebound resumed. I had a stroke in 2005 and was unconscious for 6 months in the I.C.U. on dialysis, ventilators, feeding tubes etc. I obviously could not go to school at that time. My kidneys did regain function enough for me to be taken off dialysis which was a relief because I was having to do it at home every night and I couldnt walk so my mom had to change my diapers . It was humiliating !
 I did go to highschool half days until Junior/Senior year which yes some great teachers who understood and some are just plain mean. My mom made me ride the Special Ed bus because she thought that if I had a seizure or something the ambulance would come faster. The drivers most of them could not care less and did not watch . The bus didnt even have a camera like the other buses did.


    I will add more to this later but I need to get to my review of a sewing kit so Stay tuned and be fuzzy!