A.S. Face 0036 : Sally Ann Beck
I am 48 years old, I am HLA B27+. I find it sad when I say that to some Drs they almost think I have HIV!! I have battled Ankylosing Spondylitis on and off for 23 years. Why on and off? Because my Drs changed my diagnosis so many times over the years that I never really knew what I had! I think it was actually only after a couple of years that the term Ankylosing Spondylitis was even used..
I found out by my Opthomologist who took over my case when the first Dr retired. I was confused to hear this name as I had been diagnosed with Rheumatoid Arthritis after being rushed into the hospital for a very nasty advanced case of Iritis. My eye had been imitated for over a month and I ignored it beyond excrutiating pain. The iritis was also misdiagnosed as Pink Eye and I was prescribed drops by a Dr who I had to remind he was examining my eyes not what I had down my top!!! 4 days later I was rushed to another hospital almost blind with pain and diagnosed with Iritis by an intern who was awesome!
Dr Lamb also noticed I was having trouble getting out of the chair and ordered blood tests. I thought I had pulled a back muscle 3 months earlier.. he broke the news to me about RA a few days later… It took a while to process. I was given some naproxen and eyedrops and sent on my way. I had a big problem with Alcohol and drugs back then too which didn’t help… depression from the booze and drugs along with the fact that I was trying to be ”straight” because my parents couldn’t handle having a gay daughter…
My Drs didn’t really do much for my pain, they took blood every 3 or so months to monitor my inflammation rate, gave me SOMA for muscle spasms and laughed when I said I smoked a lot of pot.. one Dr said he couldn’t tell me to smoke but wouldn’t tell me not too.. lol good ol Dr Osterland. I kept active with work and partied a lot so I was out dancing a lot.. didn’t really see anything happening though you could see I was slowing down in my later 30s.. back pain was more frequent and more intense.
I had the usual fusion in the pelvis and lower spine… I guess the heavy damage started to show or set in between 40-46.I had moved to Ontario from Montreal Quebec and was seeing a family practitioner who didn’t see any need for me to have a Rheumatologist.. she said she was more than qualified…. when I was 44, I was at a Drs appointment (with the beautiful woman who is now my wife) and we were told by the Dr after my yearly check up.. Sally is a healthy 44 year old woman who needs to stop smoking.. so I quit smoking… gave up drinking too and smoking pot.. with in a few months my spine was so curved and fused I can’t stand up straight.. my neck is crained forward thought I can look up it’s not always comfortable and sometimes I have to keep my head down to ease the pain..
I moved to Germany where after a couple of Drs appointment they sent me to a specialist who put me right into the hospital and had me put on Humira right away… no hemmming and haaaaaing with insurance.. its paid!!!!! they put me into a clinic for Inflammatory patients… I was in a private room for 3 weeks learing how to move how to eat how to live with AS… I can go back there again every 18 months or earlier if the Drs see I need it and I will never be turned down for insured physio.. Germany take AS very serious though here it is called Morbus Beschterew (pronounced More-bus Besh-terev) Look up Morbus Beschterew and you will find a lot on it.
Today I am a healthy 48 year old AS patient…I am on Humira by weekly, Tilidan and Tetrazapam.. only at night so I can lie down to sleep without waking up screaming from spasms. I don’t walk very far without my wife beside me because I need walking sticks to keep me from bending over, I don’t have good center of balance anymore because of AS.. being bumped can result in either me falling to the ground or having such intense pain that I can hardly breath.. I’m lucky to be married to someone who loves me not matter what, who doesn’t roll their eyes when I’m in pain.. and who is always trying to make things easier for me. My wife is my heart and soul! If I could do it all again, I wouldn’t mind chosing the exact same fate so I would be with my precious Kerstin. Love you lots Cookie..
For all of the new ASers who are just being diagnosed and think you can do it on your own till you really need the meds.. WHAT ARE YOU LETTING PEOPLE TELL YOU?????????? When you get to the point that you REALLY NEED the meds.. ITS TOO LATE!!!! you can prevent damage before it happens.. you can’t reverse it once it HAS happened!!!! take your meds and MOVE MOVE MOVE!!!! Learn from the mistakes that were made from some of us older once.. DONT BE BENT OUT OF SHAPE LIKE I AM! DONT LOSE YOUR INDEPENDENCE because someone told you to wait before treating it.. PREVENTING the damage is easier than repairing it!