Lost and Looking for Support
I had a rough childhood. I married very young, just to escape my unhappy life. Things just got worse. My young husband died, leaving me with a 6-month-old son, forcing me back to the same situation I had left. I only mention this because now, those days don’t seem as bad as some of the days I have now due to chronic pain.
From nurse to patient
I was a nurse for 35 years. Early in my career, I was diagnosed with Ankylosing Spondylitis. I had low back pain and I was frequently having neck pain, which I chalked up to stress. One of the physicians I worked with took note of my symptoms and he examined my spine and ordered an X-ray started me on high doses of Ibuprofen.
While it helped a little, I continued to experience the same pain. I continued to work but when my shift was over, I would tell myself, If I can just get to my car. I would arrive home, sit there for a while and talk myself into walking in the house and collapse in my recliner. I would sleep a few hours the get up to cook and clean for my husband and 3 children.
The struggle of fatigue and comorbidities
As that cycle continued, I began to suffer profound fatigue. I felt as I was constantly living in a hazy world. I saw a new doctor and she diagnosed me with fibromyalgia. As the months turned into years, I developed uncontrollable hypertension. No matter what they did my blood pressure would result in hospitalizations. Finally, they decided to take a look at my kidneys. A phone call came from the doctor, telling me that I had a large mass on my left kidney and they believed it was malignant.
A few days later I was given a diagnosed with Renal Cell Carcinoma and the kidney was removed. Between the surgery and the back pain I couldn’t even turn my self over in bed without my husbands help for several weeks. My health has continues to decline. At some point the diagnosis of AS disappeared from my list of diagnoses.
Looking for support
I now have Stage 4 renal failure. I receive PT and OT and I receive pain management. I take hydrocortisone with acetaminophen. I no longer have a social life, I have lost interest in my hobbies. It is so hard for people to understand chronic pain. I feel so lost but keep hoping for some solutions in the future. Hoping this site can give me the support I am longing for.
Do you use the word disability to describe your AS?