My name is Teri Coram, I have severe AS and have had for over 20 years. I was one who had to wait 18 years for a diagnosis, other than “Its just chronic fatigue syndrome,” or “We might have to consider the possibility that this is psychological, since we can’t find anything wrong with you. But, I believe that YOU believe you are ill and in pain.” Unfortunately, many of us know this type of treatment and patronization all too well. By the time I was diagnosed, my only option was to go on the tnf-a infusions. My DX was soon followed by copd/emphysema cystitis cystica, chronic pyelonephritis, etc. Have gone into congestive heart failure, due to a med that my body reacted badly to. I cannot take NSAIDS, as they cause renal failure, so even an aleve is now a “no-no” for me. Presently, I’ve been off of my infusions for almost a year and a half, as there is a possibility I may have a chronic form of leukemia. I am supposed to have more testing done, but we lost our insurance, and now my husband and I are divorcing. There is no spousal support, as I cannot afford to retain an attorney. I also have untreated hypothyroidism, due to not being able to afford the meds or lab work right now. An US revealed 3 growths on my thyroid, and I was supposed to have a repeat US in 6 months, just to see if there had been any change in size or shape of these growths. That was almost 2 years ago. Again haven’t been able to get the testing done. I do not qualify for regular disability, as I became incapable of working by the time I was 27, so I don’t have enough work credits. I am now in the process of filing for SSI, and am praying it will all go smoothly. I also have hemiplegic migraines, which happen without warning. As all of you know, living with AS is incredibly hard! Some days, I can barely walk to and from the bathroom alone. I’m now showing signs of my ribcage fusing, as well as my neck. My SI joints are failing, so I’m experiencing the pain that shoots down the back of my right thigh, as well as the “saddle area numbness.” My vision has gotten tremendously worse in the past year. I have days that I do feel sorry for myself, and I’ve asked “why me?” But, without a doubt I would much rather be the one battling this horrible disease than to have my kids or grandkids get this. I am one of the HLA-B27+ ones, so this means my kids and/or grand babies could end up with this. I pray constantly that they’ll be fortunate enough that it will skip them. I’m a 45-year-old woman who lives like I’m in my 80s. Pain management is a blessing, as it does help to ease the pain a bit, but I’d give anything to not have to take these meds. But, this is life with AS, right? I know that most of you understand. If I had one wish, it would be to live again, rather than just existing. Bless all of you who are in this same battle with me.
Oklahoma, United States of America