Close this page

Tracey's Story

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!!!!!!!!.

Tracey Graves


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.