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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Andrea Ortiz
    4 months ago

    I know what you mean ablut jumping around in your story. There is just so much im sure you want to say about AS and how it impacts you.

  • Lawrence "Rick" Phillips moderator
    4 months ago

    I do encourage you to continue to seek out a Rheumatologist. They have specialized information about medication and treatment options. I hope you find a wonderful treatment plan. Sometimes being in control of health is the start of feeling in control of many other parts of our lives.

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