No One Told Me

I didn’t know I had ankylosing spondylitis until I was reading a medical paper that had to do with my insurance. I thought I have AS? What is that? Thank goodness for the internet! I looked up everything I could. Then I sat back and cried. This was a terribly debilitating disease I had. I didn’t want this! I had already been diagnosed with DDD and I thought that was enough to deal with. I already had two back surgeries. I had a discectomy and a fusion.

My fusion surgery had turned into a nightmare. I was in horrific chronic pain because of a medical mistake. No, I did not sue because I was, seriously, so concentrating on staying alive. My pain was so horrific I begged for God to kill me. I was on 100 mg morphine. My pharmacist said that’s what they give to cancer patients that are dying. Again I cried.

Looking into disability

As time went on I gradually got better but had chronic pain. It is now 10+ years later and I was so happy to be on just tramadol until I had a recent flare 2 months ago. I got my first epidural less than a week ago. It seems to have helped my hip area. My tailbone still hurts like crazy. I also have a problem around the area my bra strap should be. Sorry, that’s the only way I knew to describe it. I am thinking of requesting a knew MRI.

I really need to work at getting on disability. I had to quit my job this year. I worked as a PARA for behavioral disorder kids. They took me from elementary I could handle and put me in middle school, who are dangerous. The boy I was working with when I quit seriously hurt a PARA that had just gotten back to work from double knee replacement. He kicked her in the knee and knowingly bragged about it.

Family and ankylosing spondylitis

Anyway, I have pain in my hips, knees, shoulders, and neck. I need carpal tunnel surgery and tested for sleep apnea. They don’t understand I don’t have money hidden in my mattress to pay for this. Plus hello! I just lost my job! I have trigger finger and thumb. Is that because of AS? I have another autoimmune called vitiligo. I have hypothyroidism too. I think that’s it. I remember at my worst, I looked at my husband and said “The only thing wrong is my back". He said yes. What he didn’t understand was the pain was so horrific I thought I was dying. Even wished for it.

I have a wonderful husband, two boys, and a daughter. They gave me 9 grandchildren. Plus 2 great-grandchildren. I have a wonderfully understanding 83-year-old mother Who sometimes has to live with me when she needs to be cared for. She is my support as is my husband. My daughter lives 7 hours away. My oldest son lives a few blocks away. He thinks I’m a hypochondriac and a wus. Oh and drug seeking. My youngest son understands more but lives 45 minutes away and gets frustrated as his kids are young and I can't be there for them like I was for the others.

Living with AS is not always easy

There is a lot of pain, in various forms, in all AS stories. I hate having it. I hate taking pain meds. I hate gabapentin. I struggle with depression because of the pain. I have asked my PM doc to refer me to a rheumatologist and she hasn’t yet. I need to remind her. Well, I’m sorry my story jumps around so much. But that’s it! Oh yeah, I forgot to tell you I am 58 and married for 43 years.

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