Most people who know me or others who meet me are happy to see me as I smile when I greet them. I am 62 years old and I am happy in my heart and in my mind. I have over the years managed to hide what is going on inside my body. For so many years I have been reluctant to share the pains that decides my day. Recently I read on this website someone describe AS as the invisible decease….oh so real….when I do share my condition they look at me and see nothing on the outside that appears to be wrong. I am putting my faces out to you, hoping to find the matching ones. My face today is burning up inside, after 25 years DRUG FREE, in the last 10 months I am now doing weekly injections of Humira, hydrocodiene 200 mg X 4 daily and just maintaining, just completed a prednisone 6 day pack. As I write I am fusing in my right ribs that are attaching to my spine and breast bone, my hips are grade 4 fusing as I speak, my SI joint is fused totally on the left the right side fusing, almost done . I have an appointment in a week for a re-assessment…more drugs or increased dose of Humira…yeah…I know you have been there done that…or still doing. On and on I go….sorry….that is what I said to my boss and co-worker who witnessed me having a “cramp” in my hip….excruciating pain until I could breath and walk it off…they were devastated and felt helpless. I hate when that happens in front of other people, usually that happens in the morning at home when I am alone…. limping, gritting my teeth, small breaths doesn’t always work.
Here is my clinical face, I have AS, I am positive for HLAB27 (my Father was positive), and I have had 3 bowel resections I am missing 11 inches. I had a SED rate as high as 111 at age 30 I was hospitalized for a week with steroids and water therapy-they put me in a body sling and placed me in and out twice a day. I have iritis in both eyes have had my left eye injected with cortisone. Shingles both sides, two intense episodes three mild events. Medicated to the hilt for the “flame ups” since I was diagnosed at age 22. I choose prescription drugs OFF and ON through the years because they made me sick to my stomach and diarrhea was a given. I have multiple food allergies, do not eat food from a box, I drink RO water only, I do not do low fat, nonfat, I do not do artificial sweeteners they make me sick. I love salads they do not love me. I love my salsa and green chili, I make my own. Red chili and beans are a no no…I do that on a Friday and happily suffer the consequences over the weekend before I go to work Monday….yeah you know what I am talking about.
I am back from my MD appointment on February 3rd.
My doctor confirmed that my ribs and hips are fusing together at a place on the right side and my ribs and starting to fuse on the left side. My SED rate is 9…go figure. The hydrocodone and the Humira are not enough together for the pain. Opana is what the MD said I need now. The pain associated with the fusion is more than I can bear at times. When I started this story I want to say so much more. I hoped that I could let you know that I am better now. I am not. Everyday gets worse. I am putting this “work in progress story” out there hoping that maybe someone has been through fusion in multiple areas at the same time and can encourage me to hang in there …tell me when the fusion is done I will be better…damaged but less pain. I have read pros and cons about Opana….I want to hear from AS people like me about Opana. I trust my doctor an expert with experience on AS. I am going to start Opana on Thursday 5 mg daily gradually build up until it can make every day bearable until the fusing stops. I need the best….that is why I need to hear from YOU.
Smiling always…hopeful…praying to the God who sustains me.
Desperate in Wyoming,
Wyoming, United States of America