A.S. Face 0055: Jennifer Uhart

Since I was 14, I would notice upon picking my little sister up that I would have to put her down immediately due to a pain so intense in my lower back and legs that it would leave me unable to move for days. This kind of pain continued for the next two years. This prompted my visit to a neurologist. Because of my age, we thought it was a herniated disc that would be cured by surgery. I had the surgery at the age of 16. The surgery did not stop the pain because here I am 19 years later still in pain.
After years of debilitating pain, I went back to my neurologist after an MRI showed that 5 of my discs had gone bad in 10 years for no apparent reason. He could provide no physical explanation, so came the blood tests. The blood tests showed that I had a high rheumatic factor and that I tested positive for the HLA-B27 gene common in Ankylosing Spondylitis sufferers. Because of this and the fact that my spine and hips were deteriorating, my neurologist sent me to a rheumatologist. I didn’t even know what a rheumatologist was, but I knew I was scared.
After viewing my x-rays, blood tests, and MRI results; I was diagnosed with Ankylosing Spondylitis. This was a hard diagnosis for me to take because it was incurable and progressive. I also thought about my grandfather that had AS.
From the time I was little, my grandfather stooped over to a degree that you could not help but notice even as a child. It pained me to see him like that. Before he passed away, all of his discs had fused together except in three areas. He hurt so badly that he would cry and go to the hospital to be checked in. His heart valves were blocked and he had only 30% usage of his kidneys. Ankylosing Spondylitis is systemic and spreads to your organs. He also had difficulty breathing at times. His quality of life was very bad. I am only 35 and I know how he feels.
Enough thinking time, then came action mode. I had to try something, so I continued taking pain medication and anti-inflammatories to no avail. I tried Cortisone shots and oral steroids. I tried physical therapy, exercise, and rest. I improved my diet and took some of weight off since my torso would sometimes feel like it weighed 200 pounds. To my horror, none of these things were working for me. I was also having to visit my rheumatologist quite often. Every time I would visit him, my hip and lower back would show more damage than the previous visit. This damage cannot be reversed. I feared the rate at which I was progressing. Then came the biologic drugs.
For those of you that don’t know, Remicade is an infusion that can help alleviate the symptoms and slow down the progression of AS. The infusion helped me in some ways. You felt like you were actually doing something to help yourself even if you are just sitting there with a butterfly in your arm for 2 hours every 6 weeks. I didn’t have as many debilitating days as I used to that’s for sure. I still would still hurt and I was tired a lot. Now, I am on Enbrel, a weekly shot.  It has helped a lot, but sometimes it stings thinking I have to do them for the rest of my life. I still have my bad days, but most days I can walk like a normal person, work out, and just try to be me and not me with AS.
The drugs have helped some of the physical factors, but the emotional factors leave scars. I am still scared everyday that I wake up that I will hurt badly that day. I still worry about the holidays or special occasions because one can’t tell how I will feel that day. I can’t plan events too far ahead of time because I might hurt too badly that day to go. I am not even going to mention the fear of what is happening on the inside of your body. I know that having to live like this is not fair, but all you can do is try to get used to it and have people around you that support and love you. You also have to try to be yourself as often as you can. Some days you can’t and that is okay. Live for the days you can.
Colorado United States of America
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11 Responses to “A.S. Face 0055: Jennifer Uhart”

  1. Dear Jennifer,
    Thank you so much for sharing your story with us. You are right, you have to live the days that you can, make the most out of them.
    Sincerely Cookie

    June 21, 2012 I am still trying to reach you to send you The Faces of AS Band

  2. Jennifer-
    Thank you for sharing your story. AS is a hard disease to live with and is even harder to explain to others. I am on Remicade and I have more good days then bad. I also try not to think of what is going on inside my body with all of the medicine that we take on a daily basis just to have some good days. Thank you again for your courage to share.
    Sincerely,
    Krista

  3. Jennifer –
    I experience those same fears of the unknown. It is hard to stay positive sometimes, but knowing there are others I can relate to (like you) makes life a lot simpler.
    Take care and I hope you keep having good days.
    Lauren

  4. Right now I have maybe a few good hours a week, I have forgotten what it is like to not be in pain. You are right about the fear of pain. I have panic attacks when I hear its going to rain which I already know because the pain starts at least 2 days before rain. My friends and family check the weather reports and started scheduling get together on sunny days, lol. Having a good support system is the key to getting through my bf, kids, and friends help me get through. My five years cracks me up when she says mommy my hips hurt! How many five year old know where their hips are? Or says oh no mommy its raining you know what that means, you need to go to bed. But life goes on and who knows maybe one day I will get biologics and the pain will ease up.

  5. Hi Jennifer,

    I was diagnosed at age 14 and since then (I am 42) I have been on all the drugs you mentioned. If your Rhuemy recommends seeing an Ortho for a hip replacement consultaion take hem up on it. It sounds scary, but after my hips no more meds (except an occasional asprin)! Quality of life goes up(at least for me). There are some concerns with replacement, but it really is the differnce between night and day!
    Good luck, we have been there and are hear to help or just listen!
    Take care,
    Jayson

  6. Hi Jen, my name is Kirk. I am 40 years old and been living with AS my whole life. I’ve been a union carpenter for 16 years don’ t ask me how I did it.
    I counld remember limping at work and my boss asking what was wrong, so I lied and said I cut my foot last weekend. I was afraid he lay me off.
    I had to quit work for about 2 years when I was 18 because the pain was so bad. At one point back then I felt like putting a gun to my head. I would drive myself to the hospital like your grandfather did in the middle of the night. I had one doctor tell me that the pain was in my head because nothing was on the x-ray’s.
    I’m writing you because, In my case I have to stay acktive for the pain to subside. the best job I had in the union that helped my back was saffolding at the Kleen Energy plant in Middtown Ct. The power plant that blew up 2 years ago if you heard about it.
    But in my case you got to stay active.Ive been layed off for 2 month now and I just had a fare up. I was in so much pain last night I counldnt sleep.
    So today I cleaned the whole house,cut wood,went shoping. And feel better today.I also workout at the gym and hike.With me I got to do differant things all the time to keep the pain down. I have more problems with my neck and upper back now than my lower.Pushups seems to help my upper back.
    But when I was about 18 my feet and syadica was so bad I couldn’t even walk for about a year.I use to crawl around on my hands en knee’s to get places. Peaple dont’t realize how bad AS can get.I learned to control my by being active. But on my last fare up I said to my girlfriend I don’t know what I’m going to do when i’m old and bed ridden.Because I control the pain with exercise now. When I’m to old to do it I don’t want to go though the pain I was in when I was 18. I’d rather put a gun to my head.Don’t thing I’m crazy or depressed I’m fare from that right now.I love my life right now and I’m just telling you what worked for me. I just hope you can control your pain like I did. Everyone is differant so what works for me might not work for you.
    Try staying active Kirk from Ct.

  7. Ive had AS for years my father has it so does my 22year old daughter I’m in a flare up at mo and feel really poorly.

  8. Jennifer, thank you for being honest with your emotions. I too have gone thru the gamut of them. I don’t want to be scared because I am afraid it will simply make it worse. I want to laugh… Supposed to be good medicine. Just diagnosed as I had pain in back for 14 years of which I saw a super chiropractor and still do. He keeps my spine moving. Yet now the joints that bother me are knees and wrists and ankles. Elbows at times also. Feel like you are a sister and want you to be encouraged. You have a beautiful smile. Keep smiling.

  9. Hi my name Elyas from Sweden. I get diagnosis AS before 4 month. Its very bad feeling and i dont know what i do now. Here in sweden everything is going slowly and i am thinking to visit united stat my be i get more help. Can i ask you about your feeling with this disease?did you have abdominal pain ? Is it good with remicad?

  10. Hi Jennifer
    I live in Castle Rock and am newly dx. I feel alone in colorado and would love to ask you more questions about your struggles and accomplishments with this disease. Do you know of any support groups in the area?

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