A.S. Face 1610: Teri Coram

Face 1610

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

6 Responses to “A.S. Face 1610: Teri Coram”

  1. Dear Teri,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

    • No, thank YOU, Cookie, for all of the time, effort and energy you put into this site and helping to raise awareness! Maybe there will come a day when AS patients no longer have to suffer for years without a diagnosis, and doctors will become better trained to know the signs and what tests to run when a patient presents with the symptoms of AS. I pray constantly that the AS research will at least catch up to that of lupus and other formerly misunderstood medical conditions.

  2. Understand very well, in my 60’s, battled this AS since in my early 20’s, if the diagnosis suggest a symptom due to AS, I have it, plus a few more, also due to perforated bowel from chrons disease I developed Septsis and lost my leg 14 years ago, only now with the neck and back fusion I can no longer walk, I use a wheel chair, there are days I feel like a turtle that can not get his head out if the shell, no longer can even stand and I look in a mirror…..I am now too short, can not turn my neck, or lift it up. Do I ever understand, wish others, not like us, did. I am lucky I have a husband, he is wonderful, and helpfull but he works and I am alone all day, stuck in the house. So yes this condition sucks, no NSAIDs either, kidneys have shut down a couple if times, I also gave an ilistomy, on the same side of my missing keg, sometimes they do not work well together. I am fortunate to have Medicare now, but the doctors say there is nothing more that they can do, so here I am stuck with the disease, waiting fir the end, please take care try to get as much help as you can, contact the Arthritis foundation see if they can help you. I know how hard it can be, we lost our home a few years ago, just couldn’t afford it anymore, I have been retired for a couple of years now so life can be tough. Prayers to you my dear, if you can, keep your chin up, I can no longer do that…TAKE CARE Anne an AS doomed sufferer.

    • Oh Anne, I cannot even begin to tell you how much your story breaks my heart. But, it is good sometimes to know that we are not alone. At least there are others who can truly understand what we are going through, because unfortunately they’re also battling this monster. Yesterday, I read an article that said “The cure for lupus has been discovered!” Although I am happy for those who have lupus, my eldest sister being one of them, I still cried. My own rheumatologist told me that AS research is at least 20 years behind that of lupus research. Awareness is another huge problem. It seems that everyone now knows what lupus is, but those who have heard of AS, most if the time think it’s just simply a back problem… If only the truth about this debilitating disease was as well understood as lupus, even that would help a little. If only to change the public, as well as uneducated doctors’ perception of what the reality is of having AS. They’d know it was much more than “just back pain.” I for one look forward to that day. You are an incredibly strong woman, who knows how to keep fighting. We both know that is the only thing to do. Because, for me, giving up or giving in is just not an option. Thank you for your words of encouragement, as well as sharing a bit of your own story with me. It means so much more to me than you could imagine! Bless you, and bless your husband for remaining beside you through this!

  3. I don’t know what state that you are in but i would check their 211 website. Most states have this as a resource outreach. But i have felt the exact way you do. That i just wish for life before AS back. But i guess we do have to be thankful for knowing what it was like and be thankful for that time, . I think depression is hard to fight with this disease, but find something postive to do i like naking crafts out of recycled items.
    Thanks Debbie.

    • Hi Debra! Thank you for taking the time to read my “journey.” I’m sorry you are also an AS sufferer. Im not familiar with a 211 site. In fact, this is the first time I’ve heard of this. What search terms would I need to enter, in order to get more information about this? I’m in Oklahoma.
      Thanks again, so much, for taking the time to read about my journey and reply.

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