MY Behcet's

MY Behcet's describes how I was diagnosed with Behcet's, how it manifests in terms of symptoms, and how it digs a hole into the very center of my being.




So, I have discussed a little bit about what Behcet's is. Like any disease, Behcet's is different in every affected infidivudal. I have a severe case because it does not respond well to medications. Here is a list of all the medical problems or symptoms that I have. The majority of them stem from Behcet's Disease, but some are unrelated.

-Severe recurrent painful mouth ulcers in mouth and throat
-Joint pain
-Chronic fatigue
-Blood clots
-Ovarian cysts
-Tendonitis in right knee
-Achilles tendonitis (left and right)
Tendonitis in right hand
Tendonitis in left arm/wrist
-Arthritis in two vertabrae in neck
-Chronic migraines
-Costochondritis (inflammation in the cartilage in between my ribs, causing severe pain)
-Ulcers on my skin, painful
-Fibromyalgia pain all over body
-Sinus problems
-Mitral valve prolapse
-Akathesia (similar to restless leg syndrome, but over entire body...worst feeling ever.)
-Anxiety and depression related to medical condition. Without my illness, anxiety and depression are not present.
-Thyroid problems (as a result of prolonged steroid medications)


I think this may cover the majority of the problems. However, I sometimes forget something because it is so much! Living in chronic pain is extremely difficult. It has taught me not to take life for granted, so even if I have ONE HOUR of little pain, I take full advantage of it. I have yet to feel "good" for more than  24 hours....There may be times when I feel better than others, but it is quite rare. I am considered to have a rare presentation of a rare disease.....What does that make me...rarer? The rarest? I'll tell you what it makes it..NOT FUN :) Although it does allow me to connect with others who are also struggling. And it makes me a better therapist. Although I am not working right now, I will someday...I HOPE. Even talking with friends and family, I have even more empathy for those individuals who struggle with anything, especially pain or medical issues. Sometimes I think that maybe this is my purpose in life....Reaching out to those who have medical problems. I know I have worked with kids, and I thought that was my purpose. Combine the two, maybe I am supposed to work with kids with medical problems?

Perhaps I am simply supposed to be a voice for those who cannot speak....for those who are in similar situations but are unable to get their message across. It sounds simple, but trust me, it is not. Nothing is worse than feeling this way and also feeling unheard.