All I Want from Santa....(And Doctors)
I loved my friends, I loved my job, I loved life. I worked for our state, Alaska, for almost 17 years. I found my husband at this job, and also had real, lasting friendships with many people through this job. This job, which I still get teary-eyed thinking about it, was my dream job. I helped people in my state with public assistance programs. I love helping people.
Ankylosing spondylitis and fibromyalgia
Everything in life was good, too good. But I still had many questions about why I was feeling the way I did. And then answers to most of my medical questions were answered. AS and fibro.
I have tried Enbrel (finding I latent TB), Humira, Cimzia, Remicade, Cosentyx and now Xeljanz. No help with any of them, nothing with Xeljanz so far.
In that time I lost my job (had to fight with state to get medically retired and also big fight with long term disability - doing this with debilitating pain and exhaustion) and with that job loss, friends lost also - too many no’s to invites, then no more invites.
My knight in shining armor
Through all this, my husband is and has been my knight in shining armor. Helped me physically, emotionally, and mentally, kept the fights alive until we won. Could not have done so if it weren’t for him.
I still believe that there are more illnesses involved, I ask everything to all of my doctors (had only PA at the beginning, now have 4 main doctors, and have been through many others).
Never without pain
I’m never without pain, something is always happening. Scared that there is more going on and angry that most doctors aren’t taking me seriously, “all in the head” vibes. Also scared that in 10 years they will find these biologics that I’ve taken are more harmful than believed and that I will suffer more down the road. Having these diseases, and believing more is going on is rough on the brain.
What irony it is that for years I loved helping people when they are in their most desperate of times, to now, me needing help and desperate for answers. Where I live, North Pole, Alaska, I’ve even asked Santa for answers🙂🎅🏼.
Do you use the word disability to describe your AS?