This is my story and I’m paining to it….

My story starts when I was young, for years I had aches and pains, like others I was labeled an attention seeker, nothing was wrong with me, I was too young to have all this pain. I would go to bed and cry, if only my parents or someone would listen to my words, I cried then and 40 years later I still go to bed and cry, when I was 42 I had to go on disability, all my hard work, everything I worked for was going, going, going. You see, if you haven’t been there you really don’t know how going from $50 grand a year to $19,000 a year, our lifestyles sure change adding fuel to the fire. Over the years I have treated my RA with most drugs, no infusions for my insurance will not pay for it, I suffer with the crippling hands and fingers to the toe stacking. When one takes many pain meds and nothing touches your pain, you have a problem. I’m 58, raising a grand child from birth who will be 16 this year. I have no quality of life, if I can get up I can’t get down and vice-versa, I find myself feeling like my life would be satisfied in the nursing home… Maybe when my grand daughter turns 18 and can make it on her own I will look into it, as of now I suffer and most the time I suffer alone. I believe in God and love him greatly and I know there is a reason for my pain, so many days I just hate my life…Until the next post, take care, try to stay pain free…love to all.

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Comments

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  • Jillian S moderator
    3 years ago

    Hello 14h3wa0,
    I am so sorry to hear about everything you are dealing with. The conditions you mentioned in addition to RA are quite common comorbidities for those who are diagnosed with RA. Though I am sure that you are very well versed it all of these conditions, I wanted to share with you our overview on them just to have a reference: https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/

    It is understandable that despite the fact that you are surely a fighter, it can be hard to keep pushing forward. In addition to the physical comorbidities I shared above, those with chronic disease have a higher incidence of changes in mental state. I wanted to share with you an interesting article on the impact of RA of mental functioning: https://rheumatoidarthritis.net/living/just-head-impact-ra-mental-functioning/

    Many of our community members have found it helpful to openly discuss how RA affects their life in a support group or one on one with a therapist. If you are interested in more information about a support group, feel free to contact the Arthritis Foundation at http://www.arthritis.org or 1-800-283-7800. If you are interested in individual therapy, contact your insurance to see which therapists are covered in your area.

    Lastly, if you didn’t know already, we have a community for Crohn’s Disease! We would love for you to be a part of that community as well: https://crohnsdisease.com/

    Please let us know if there is anything else we can help you with. Thank you again for sharing your story with us–
    It is so helpful to learn from one another and members who are willing to share their experiences make that possible.
    Warm regards,
    Jillian (Rheumatoidarthritis.net Team)

  • Erin Rush moderator
    3 years ago

    Hi and thank you for sharing part of your story with the RheumatoidArthritis.net community. While I wish no one had to live with RA, I *am* glad you found your way here!I am not a physician and am unable to give medical advice, but it does sound like you may have been dealing with RA from a young age. You might be able to relate to this article from one of our contributors — https://rheumatoidarthritis.net/living/childhood-ace-bandages/. I am so sorry your quality of life is not very good right now. There is no pat answer or happy phrase that I could offer that will change that. However, I hope you are able to acknowledge that you are obviously a fighter and a survivor and that counts for a lot. You have been through a lot and you have not given up and that is something to be proud of. If you feel that assisted living would improve your quality of life, then that may be an option to pursue once your granddaughter is independent. Are there any activities that bring you joy, like reading, doing puzzles, etc? Also, please feel free to look around our site and also check out our facebook page to find more people who get what you’re going through — https://www.facebook.com/RheumatoidArthritisDotNet/?fref=nf. Know you are not alone in this! There is a large community of people with RA that can relate to so much of your story. So, thank you again for taking the time to share and be open with us. Thank you! Erin, RheumatoidArthritis.net Team Member.

  • suann author
    3 years ago

    Thank you for inviting me to be a member, I also have many more chronic illness such as Lupus,OA,Reynauds,Sjogrens, sportatic Arth..Chrons, I am a fighter for sure but like everyone else,,throwing in the towel sounds good at times…Hugs

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