Where do I begin? How about when I was born ....good start I guess. Well nothing exciting really, other than the fact that I was ill and lost my hearing in my left ear. An apparently I have been ill now for 34years!
I have suffered on every level with everyone else who has this dreaded disease. I am just glad to know that I am not alone here.
I have been to the doctor so many times now she knows me when she sees me out and about? Not a good sign!
I will only go back as farr as I can remember to have signs of BD. That would be my wedding day August 21/99.
I had so many sores in my mouth that I was dreading the thought of kissing my new hubby! I had them on my face and lips.
I spent my honey-moon looking for canker sore creams or medications that I could buy over the counter. And that was a hard task in P.E.I. Not alot of corner stores there. Any-way all went well. Luckily I have a very understanding husband!!!
Anyway, after many trips to the doctor for different problems I thought I would do some research on the internet to see if there was anything I could do to get rid of the cankers in my mouth. I finally found a site about BD. I was to the point were I was drinking Ensure because I had so many cankers in my mouth that it hurt to talk/eat and breathe and the fact that I was seriously depressed. I printed up this information and made a doctors appointment again! I went to the doctor with my papers in hand and demanded that she send me to a specialist! I needed some answers because at that time I seriously thought I was going to die! Finally she sent me to a dermatologist because I had a huge rash on the front of my legs and face and oh don't forget in my mouth and lips!
This new doctor is absolutley great! She knows what I am going through and helps me deal with it. I was finally diagnosed in June with BD and put on Prednisone and colchicine. Started weening off the prednisone after 3 months of being on the colchicine and had a huge flare up again. I was taken off the colchincine, upped my dose of prednisone and put on a new drug called Dapsone. Well new to me anyway.....
Oh man what a bad week I had!!!!! Not sure if it was the drugs or what but I could of just laid down and died! My brain was in a fog, my left eye was loosing it's vision, my feet/legs were cramping like they never have before, I couldn't remember phone numbers that I call everyday, my hands couldn't stop shaking and I tried not to pee cuz it hurt. I was(still am) functioning on about 2-3 hours a nite sleep and I can/still cry at the drop of a hat. Not to mention the fact that my lips had gone this really cool shade of blue. I drove myself to the doctor to get some serious help. She immediately took me off the Dapsone and upped my prednisone to 6 pills in the morning again. And put my on sick leave.
Oh did I mention that I no longer fit into any of my clothes? In 2 months I gained 27 pounds. That, I am not dealing with very well, as I was always slim and trim and could eat anything I wanted with out ever gaining any weight. Just now I am eating what ever I want but expanding right along with it. My bother got married in September and I had my dress sized 4 times before the actual wedding! I wanted to wear it to my work party but guess what......I don't fit into it! Ha Ha.....My mom says I can get the size of a house she doesn't care, and my husband is gaining weight right along with me. He calls it simpathy weight gain.
I read all the stories and I think I am lucky! I have a loving understanding husband and a family that just lets me cry and vent when I need to. They all support me, with out them I think I would not of made it this far.
I can't walk today because my feet/legs hurt so much but a good thing is my vision has cleared up. I could drive again if my car wasn't standard(can't shift gears hurts my feet and hands too much) That's what I get for buying the fancy new car....right?!?!!?
................................................... But I know it's not in my head and I am happy for that!!!!!!!!.
I would like to talk to others that are suffering along with this dreaded disease. I want everyone to know they are not alone as I thought I was.