- Stiff Person Syndrome
- Interviews
annetexa's interview
How did all start?
When I was young, I had been sick quite a bit with colds and other odd symptoms the doctors couldn't figure out. When I turned 26 years old, I got bacterial meningitis and treated. After the meningitis, I developed chronic pain where my muscles would tense and not let go. Most doctors I saw treated the symptoms without knowing the underlying issue. An immunologist who was retiring suggested I see a neuro-immunologist for my issues. After a few appointments, I was officially diagnosed with stiff person's syndrome and started on IVIG treatment.
Do you already have a diagnosis? How long did it take you to get it?
I do have a diagnosis from my GAD 65 blood levels. It took me 21 years to get a final diagnosis.
What have been your biggest difficulties?
IVIG shortage, at the moment with the idea that I may not know how long before my next treatment. The only doctor I have found practices out of a hospital 4 hours away from my home. Also the IVIG treatments are for 3 consecutive days and I have quite a bit of financial burden with the extra money I spend in food and hotels.
How has your social and family environment reacted? Have your social or family relationships changed?
They have been supportive, but it has put a strain on my relationship. Right now we have to juggle treatments and other things in life like my husband's son with autism, his father with Alzeheimers/Parkinson disease, and the stress of my declining health.
What things have you stopped doing?
I've stopped trying to push myself over the limit...or at least trying to do so battling my own stubbornness and hopes of being "normal". I don't really call it things I stopped doing, but things I've slowly accepted will be a hinderance to me.
What do you think about the future?
I am scared about the future. My mom died at 65, sister at 52, brother at 51...I am scared and hope I don't become so disabled that I cannot take care of myself. I am worried about the burden I put on the people I love and who love me. They tell me IVIG may put it into remission, but with the shortage and length of time suffering from SPS, I can't see clearly into my future.
So far, which years have been the best years in your life? What have you done during them?
All my years are the best years of my life...who you kidding...I love them all and try to find the good in everyday.
What would you like to do if you didn’t have your condition?
I would love to be a teacher.
If you had to describe your life in a sentence, what would it be?
It is what it is and can't control the challenges we are individually given, so we must do the best with what we have before us this moment.
Finally, what advice would you give to a person in a similar situation?
Keep going....you are still alive, you always have a chance. We all have to accept the challenges given to us in life and not compare ourselves to others. Life isn't a contest and just because it seems like others have it easier, you cannot say for sure that their life is easier/hard than your own. There is no one to blame for what we deal with and shouldn't compare ourselves because that only leads to an unhappy life.
