Discussion in 'Random Ramblings' started by Alleyoops25, Jul 6, 2007.

  1. Alleyoops25

    Alleyoops25 Songster

    May 14, 2007
    Today I feel majorlly depressed. Here a month ago I had a bunch of blood drawn to try to figure out why I am hurting and feeling bad all the time. Well Monday I recieved a phone call from my Doctor and My blood work shows that I have my dads bone disease. It is called Ankylosing Spondylitis. It is aform of arthritis that mainly involes the spine and joints of the extremities, Such as shoulders, hips, ribs and knees.Normal tissue that connects the vertebrae is gradually replaced by bone-like fibers which will fuse the spine and other body parts meantioned. It can also cause inflammation of the eyes, lungs and heart. It is found most often in men in there 20's how ever in cases like my self women.
    I have been in pain in all the areas listed above since I was 20, My doctor at the time laughed at me and told me that I was worring about nothing. He was a DO and every week until last Feb. he would have me come in and do adjustments on me and it never helped. Then I went to a diferent female doctor here in town and she has been very willing to help me find out why I have migrianes so often and why I feel sickly, and am hurting all the time. When I heard the results of this test my mind went blank and I think it has finally sunk in today. I always new it was heriditary and even knew that I had it for a long time. But actually hearing it from a doctor was kind of finalizing that I may be in a wheel chiar by the time i am 40. My poor Dad has walked with a cane since he was 34. He is now been in a wheel chair since his late 40s. He no longer has any hip joints, just whats left of his upper leg bone is floating around in pelvis. He is forever going to be bent over in his posture. And his ribs are so fused together that he cant take deep breathes, and he gets pneumonia alot. Once we had to put him on life support because he had pneumonia so bad and he could get enough oxygen. I dont think I will ever get as bad off as he is. But I know that anything I would like to do that requires me to be pyhsical I better do it now rather then wait, Becaus eI know if I wait to long I wont ever get to do it. The two hardest things about this is that I am a very active person and I know that I wont be able to do the things that I like doing like hiking and jogging, biking. And the other is I am scared That my kids will have end up having this disease when they grow up. I have had x rays done here about a year ago and it showed my pelvic bone showing some calcium setting in. I have to go have more xrays done so they can compare them together and see how bad it has spread and what areas are getting affected. It is just a hard pill for me to swallow. Knowing that I am getting ready for a long road of pain. I dont think I am as strong as my dad. And I dont know if I could ever live being disabled.
  2. lurky

    lurky Songster

    Jun 4, 2007
    Western MA poor thing [​IMG]
    How old are you?
  3. missusduray

    missusduray Songster

    May 20, 2007
    Northern Minnesota
    Ohhh, Alleyoops. I am soooo sorry to hear that. Last year they thought my husband had that. After a lot of tests they decided that he has reactive arthritis, and the inflamation was due to a medication that he was on. He was 26 at the time. I know how scary that can be and I was so scared that that was the diagnosis that they would come back with. My thoughts and prayers are with you in this difficult time. HUGS!
    edited to add: I was diagnosed at 16 with fibromyalgia. I sympathize. It too is genetic.
    Last edited: Jul 6, 2007
  4. Alleyoops25

    Alleyoops25 Songster

    May 14, 2007
    I am 25 year old.
  5. sara

    sara Title Needed Here

    I can't say that I know how you feel completely, I'm 28 and have cancer, I'm doing pretty good, but just live every day the best I can, and treasure the days I do feel good. One of the things that makes me feel better is sitting outside watching my birds..they entertain me so much..
  6. lurky

    lurky Songster

    Jun 4, 2007
    Western MA
    I figured 25 from your user-id. The best thing you can do is study this thing and make the most of the days when you are feeling better. Maybe try to find a support group of people who know how you are feeling. You always got BYC peeps but a support group might be a good idea.
  7. dragonlili

    dragonlili Songster

    May 26, 2007
    N Middle TN
    Sorry to hear it. My dad had that too. His neck became very stiff and so he stopped getting enough oxygen to his brain. I guess he was diagnosed about 10 years ago. I wonder if he had it for longer. It appers to affect some people worse than others. I had a client who was in her 40s when she was diagnosed and she had very few problems. I'm so scared that I may have it too. I have been plagued with migraines lately, normally they are not that bad. I have bouts of overall pain and am getting arthritic in my shoulder and hip, not to mention breathing problems too; that's been about 5 years now.

    I know that its a hard blow for you. To live in physical pain is awful. Unfortunately there are some things that genetically we cannot avoid. I guess there are worse diseases to have, the kind that tear you away from your loved ones pre-maturely. For me, that is my worst fear. Now it may not hit you as preofoundly as your father, either. You just don't know yet and you may not know for a long time.

    Take joy in the small things. Try to live a peaceful life. Kiss your children daily, and always let people know how much they mean to you. Simplify things. I don't know if any of this is going to help, I just want you to know that someone has read your message, that someone cares, and that you are not alone.
  8. justusnak

    justusnak Flock Mistress

    Feb 28, 2007
    South Eastern Indiana

    I am so sorry to hear of your diagnosis. Does it help to know.....we are all here for you...whenever you might need to talk.? I have lived in pain my whole life....which to some is not that long, 45 yrs. I get out when I can....and spend as much time with my chickens as possible. I try to work through the pain....and have come accustomed to it. I dont think I would know how to feel, if I woke up one day, with no pain. I would probably think I was in Heaven.
    Just know....we are here for you...and love your family openly...and honestly. You have my prayers strong...dont EVER give up!
  9. LuckysMom

    LuckysMom Songster

    Jun 14, 2007
    South Carolina
    What kind of doctor is a DO? I can't believe he didn't take you serious given your family history. Are there any medicines that can help slow the progress of this disease? Keep us posted on what you find out about your condition, and the possible treatments for it. I am praying that God sends you strength to deal with this, people to help you, and peace of mind knowing that you are in His hands.
  10. blossom hen

    blossom hen Songster

    Feb 20, 2007
    NE Tx
    Alleyoops, my mom got that diagnosis about 15 yrs ago. She and all her siblings have varing degrees of arthritis as do almost all of my generation in the family. Anyway, my mom had both hips replaced four years ago and is still pushing on (at 85). In talking with my brothers and some of my cousins, we're all of the same opinion - the more active we push ourselves to be (within reason) the better our bodies seem to hold up. Yes it is painful every day, but with medical advances we seem to be able to keep going. Hope your doctor is able to help you find the right combination of meds and exercise to keep you active for a long time.

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