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Kim’s Story

I have been diagnosed with RA 8 years ago when I was 40. For years all I could afford was to go to a little town Dr. that barely charged me and gave me prednisone and pain medication. Well I have a very aggressive form of RA. I am vitamin D deficient, anemic at times, my protein levels are way off, and somehow from the RA I have developed osteoarthritis in my knees especially my right knee which has been bone on bone for 4 years!! I was going to get a knee replacement at the end if 2016 because I finally had insurance and was on Orencia for a while, which haloed, but my blood work was not good enough three times before I went into surgery. Finally, when my numbers in my blood became normal I was ready for surgery, but my family member who was going to take care of me, had to go out of town and in 2017 I list my medical insurance!! I have just been out of work long enough to apply for disability, and I was able to get my Enbrel through a program for free for a little while longer, but it is not working for my legs at all!! I can barely walk, and have no idea if I will be able to wait the disability process out without any help from a Dr. My pain is SO SO bad, I mean maddening do not wish this on anyone prednisone helps but is not good to take with Enbrel. I guess I am asking for some suggestions I have no insurance no income, and I guess what is so frustrating is that I know I could be a functioning member of society physically if I could just get a rheumatologist to watch me and monitor me, and a surgical procedure that can help me walk. I don’t have to end up in a wheel chair if some way some where I can get surgery. Thank you for reading I am so frustrated and so sad. I look to God for peace and yes, I know he is able and I know he can heal me, but some reason at this time it us not happening!! Pray for me my new friends, please. I won’t even go out to eat with family because I do not want to see anybody I used to know. My dignity well I don’t have much anymore, and I am trying so hard to not get into victim mode. I am trying to reach out in every way I will work if people could get over how I walk. I have a bachelor’s degree in social work of all things, lol!! I am in the process of applying for disability, but we all know how that can turn out and how long it takes but I am putting my trust in God if anybody knows any other way I can try to get a knee replacement please please respond thank you, and again sorry this was so long!! God bless you all you will all be in my prayers as well!!

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Comments

  • rockcandi
    1 year ago

    I am so sorry you are going through all of this! I’ve gone through similar situation myself except I wasn’t waiting for surgery. I really hope things can work out quickly for you! I also know what it’s like to know and trust that God will heal me but to get frustrated wondering why He hasn’t yet. We’ll never understand all the mysteries of God. Praying for you! Best of “luck” to you in this trying time.

  • amybeth
    2 years ago

    Hi Kim,
    I’m sorry you’re struggling so much. I hope new options open up for you quickly.
    Wishing you well, Amy

  • Erin Rush moderator
    2 years ago

    Hi Kim! First off, thank you for sharing a part of your story with the RheumatoidArthritis.net community. I am so sorry you have been having such a difficult time getting the care and treatment you need. That is incredibly frustrating, to say the least. I hope your SSDI application is handled in a speedy fashion and approved, although you are right to be pragmatic about it. You mentioned that you were able to get Enbrel through an assistance program for awhile. Is this no longer the case? Do you have a physician willing to prescribe treatments for you, even if he/she is not a rheumatologist? There are other aid programs out there for prescriptions, but I realize that is a moot point if you can’t even get a physician to write a prescription for something besides prednisone and Enbrel. You may want to check out this site — http://www.needymeds.org/ or this one https://www.pparx.org/. You can see which RA meds qualify under the programs. As far as finding a physician, with your knowledgeable background, I doubt I can suggest anything you haven’t already thought of. Since you are also dealing with OA, you may want to check out these resources through the Arthritis Foundation — http://www.arthritis.org/living-with-arthritis/health-care/paying-for-care/. Specifically, this site offers financial aid to people needing joint replacement procedures — http://www.opwalkusa.com/ (while I cannot personally vouch for this organization, it is included in the list of links from the Arthritis Foundation and seems to be legitimate). I am sorry I can’t offer any hard and fast solutions for you. Please know that you are not alone in this! Your words echo the sentiments of many of our members — the frustration, the pain, the longing to be an active part of the community again, etc. All of us here at RheumatoidArthritis.net will keep you in our thoughts. Please keep us updated on your situation, should you feel comfortable doing so. Best, Erin, RheumatoidArthritis.net Team Member.

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