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75 Responses to “A Patient Foundation for Rheumatoid Arthritis”

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    1. Jacqueline says:

      So excited to find information on the new patient foundation. How can I get involved?

    2. Kim says:

      This is GREAT news! All of the things you listed are needed. I’d just love to see accurate symptoms lists on major websites. Can’t wait to help!

    3. Stacey Walsh says:

      This is fantastic Kelly! I am so excited! Thank you so much. So now let me ask, what can we do to help?

    4. Lisa says:

      Sign me up Kelly, let me know what I can do or how I can help.

      Way to go!

    5. AprilWells says:

      What can I do to help? I can’t wait to get started! Sign me UP!!!

    6. Alecia says:

      I would love to help out with the foundation. Does it have a website? Please sign me up so that I can help.

    7. Angela Mooer says:

      Yes Kelly, how can we get involved? This is wonderful news.

    8. Yes, the website will be coming and I’ll post more info as soon as possible. We’ll put up the mission statement and the board members and everything as soon as possible!! We have some great people behind us already!

      Thank you all so much for posting support!!

    9. James says:

      I am all for it…what can I do to help get it going. I was diagnosed about three months ago and will now have to under go a medical evaluation board with the military, which means I most likely will not be able to stay and I will no longer have employment.

    10. Patty K says:

      Hooray for Kelly! Thanks for all you do! And Happy Easter! :-)

    11. Julie says:

      What exciting news,Kelly!! I look forward to what comes next!Wouldnt it be great, if we had enough members to take RA patients to their appointments, tests, etc, if they need assistance to do so?

      As a Christian, it would also be great if we could have united prayer, but i realize that may be just a very specialized section of the new organization.

    12. Rose Vincens says:

      Ms. Kelly,

      A Patient Foundation for Rheumatoid Arthritis sounds wonderful!

      I live in southeast Louisiana. I’ve tried contacting the AF a while back (year ago) for information, questions and/or help. After leaving several messages with live agents from their 800 number and leaving a message with a lady in their main office in Atlanta , no one ever returned my calls. I was a ‘friend’ to the AF through my FB account so I posted on their wall that I could not get in touch with them. Then I had someone send me a message saying they would get someone to get in touch with me. Several weeks went by then finally someone did call. One of my questions was about a support group, where I could correspond with people going through the same health issues as myself. I was told because of Hurricane Katrina (5 years ago people) Louisiana doesn’t have an AF office. I asked if they helped with consuling and they referred me a different foundation. I asked if they ‘helped’ people obtain aids for everyday living (canes, walkers, etc.) and again was referred to another foundation.

      Is the only thing they (AF) do is raise moneys for research? I thought they did so much more than research. Because all those special drugs that are ‘suppost’ to help us cost our insurance companies so much. I said ‘cost our insurance companies so much’ because I doubt you could afford these drugs IF you didnt’ have insurance. One drug that I tried for awhile ‘that didn’t help’ cost my insurance company about 7 grand every six weeks. I’ve tried several. So far, none has really made any difference.
      I am widowed. I live alone. Most of my family and friends did move because of Katrina. For the most part, the only backup/support system I can COUNT on is a brother who lives 45 minutes away and has heart trouble himself. I get up every morning 2 hours ahead of time to fight against the pain to get myself dressed for work. I still work fulltime. I’ve applied for disability, but havent’ heard anything as of yet. I had both knees replaced 8 years ago. Currently I have trouble with both ankles, wrists and fingers. I keep hearing from others, if I’m working, I won’t qualify. And if I don’t work, I’d lose my home and be homeless. Thank God for a very understanding boss. Their are many days I sit at my desk and cry in pain.
      But I think what is more frustrating than anything is people questioning your pain. The more information feed to the public can ONLY help.
      I’ve learned more from reading YOUR site than I have from ANYWHERE. Thank you Ms. Kelly for feeding us the knowledge we need and letting us know we’re NOT alone.
      Here’s wishing you many blessings,
      Rose

      • Thanks, Rose. I hope your disability goes through soon.
        We’ll post more on this subject in the future, but folks should know about the Within Our Reach campaign with the ACR’s Research Education Foundation – they raise the most money for RA research.
        From what I read, a small part of the AF budget goes to RA research.

      • Joie says:

        Rose,

        I’m sorry to hear of your disappointing experience with the Arthritis Foundation. Each region has a local chapter and the services/assistance they provide may vary.

        Over the 34 years I’ve had RA, I’ve found my local chapter in Northern California to be helpful. It was at an event they held, that I heard a rheumatologist speak — he has been my doctor for nearly 25 years now. I’ve taken a Self-Management Workshop sponsored by AF and participated in an AF RA support group. I’ve also taken an arthritis pool class sponsored by the AF.

        Money raised by local chapters through events like the Arthritis Walks go toward courses and for training and certifying course instructors, and this may vary from chapter to chapter.

    13. This is very encouraging news. Thank you, Kelly.

    14. GinaRClark says:

      I found a compassionate & intelligent Rheumatologist and his kindness was so unexpected that I cried happy tears all the way home!

    15. Russell says:

      Please let me know how I can help Kelly, great news!

    16. Katie says:

      Simply amazing!

    17. Ronda says:

      Awesome Kelly!! I have been patiently waiting for this, and am very excited to see it happen.
      By the way, I would not be an educated, outspoken patient today with out you and your blog. Here is just one example of what you have done for me. I would not have the knowledge or confidence to talk with my Doc like this without what I’ve learned from you:

      Last week at my rheum appt I was determined to have my Doc understand MY RA as I was really getting tired of it being confused with someone else’s. I explained my history. I pointed out that one of my dip joints was the first of my finger joints to be affected by RA. He said NO, RA does not affect the dip joints. I said well it did on me, it was red, swollen and painful for several months, then morphed my finger into a swan neck deformity. I don’t think he agreed that it was RA, but maybe it will make him think.
      Most importantly, I asked him to please ask about my shoulders, not my hands, since they are my disease barometers, along with fever. He said, I guess that can happen to have the shoulders be inflamed, without the hands being inflamed at the same time, but it is more unusual. He agreed that with the shoulders, you can’t see the swelling/effusion unless an MRI is done. I felt so much better after this appt. I am hoping he does understand my RA now, and treats me like an individual.
      I encourage you all to introduce your Doc to your RA, if it contradicts the text book!
      I have 3 joints affected by RA in my fingers, they happened one at a time and did not affect the matching joint on the other hand. My RA was unsymmetrical for the first 3 years. This is one reason I did not get diagnosed early on.
      Kelly I will surely be a part of the new organization in whatever capacity you want, even if just a member. The Lord willing, I will be able. Thank you for all your hard work and dedication, you da bomb!!

    18. Tanya Tudor says:

      I am so excited and happy. As alot have said, I will wait impatiently for instructions on how to help. You continue to amaze me.

    19. christina booker says:

      I am a physician with RA. I have been so let down by my profession in the last year as I have had many of the experiences that you have described as a patient. Feeling like I have to prove how awful I feel fills me with self doubt. You can’t measure pain. That’s not the worse part…daily fevers and 25 pound weight loss have left me barely functional. But im seroneg and aparantly doing just great! I used to run 10 k,I walked around for 2 yrs with 2 ruptured discs in my ls spine before finally having surgery. I am no stranger to pain. I have kept trucking through it all. The only the I want is my life back. Not pity. Not attention. Not pain meds. You are leading a trail of awareness letting patients know that its ok to stand up for their needs and rights and hopefully our rheumatologists will be reeducated as well

      • So well said, not much could be added. I’ve heard from a handful of doctors who have RA who write secretly hoping to preserve their careers – RA doesn’t care what our profession is – and unfortunately our medical care is about the same too.

        Educating rheumatologists is extremely high on my priority list. I’d love to have you on board some day as we work that out.

    20. inspiraven says:

      Kelly, you asked:
      “Do you see why I wish I could do more to help?”

      I see why you wish you could do more to help, and like many others here, I want you to see, no FEEL how you (and everyone who shares there story here) does help. So much more than can be measured.

      I was diagnosed back in the late 70’s, and by the mid 80’s I had had too much of what I call Keystone Quackery. Now, even if I had the ability to pay for any medical attention I would not. That’s me. Though I’m in pain every day, and quite disabled I prefer that torture rack than the ‘experts’ telling me it’s my imagination, instability, or weakness or being the unresponsive guinia pig to big pharmas experiments. Thats me.
      I applaud the courage and strength of each of you on a different path with your choices. Despite this very personal life choice, I am 100% behind all patients in their pursuit of relief, understanding and any healing they can get.
      Part of me is still shocked and heartbroken every time I see examples of this cruel trend in medicine, that it still goes on, all these years later… And likewise I feel joy when stories of compassionate good docs are told.
      It has been many years since I on the merry go round of treatments and try outs that being an RA patient exposes one to. I was a young woman who had been poked prodded and put down too much to continue on that path, and now I’m an older woman who is hurting badly, but content with her choice.
      Despite this, I stand in solidarity with all patients suffering from invisible diseases, and am thrilled to see this new foundation forming. So, even though I am on a much different path with how I live with RA, I, like many people benefit enormously from all the information and connection that you Kelly, and this site offer.
      Also, I recently read an article:
      http://www.happinessinthisworld.com/2011/04/17/managing-chronic-pain/#comment-59644
      Where a physician explains some of the caregivers attitudes shown to patients that they can’t ‘fix’.
      I too wish to help and be involved, even from my disconnected, alternate path. Many blessings and much gratefulness to all who keep on keep’n on

    21. Jen Ward says:

      Kelly

      Is there a website for the RA Patient Foundation?

      Thanks
      Jen

    22. Mary says:

      For the life of me I cannot figure out how any rheumatologist could possibly believe that there are joints that cannot be affected by RA. I was diagnosed 23 years ago and have had many rheumatologists, some better than others. Fortunately not ONE ever said such to me. As I understand it, if a joint has cartilage or synovium, it can be attacked by our wonderful immune systems. 😉 I think the ONLY joints that have not had a flare at some point or other would be my ribs. My spine is certainly affected, both lower and cervical, along with the rest.

      Thank you for starting this foundation, Kelly! I’ve been disappointed by the Arthritis Foundation in many ways but I have neither time nor inclination to detail such. Do let us know when you are ready for members to join!

    23. Marie says:

      This is wonderful news Kelly! I am anxious to see the website and to determine how I can get involved and/or help.

      I remain eternally thankful to you for your efforts on behalf of our community. The quality and integrity of rawarrior.com far surpasses any other RA resource on the web today.

    24. […] wonderful blog Rheumatoid Arthritis Warrior has posted the OH  SO encouraging news about a new Patient Foundation for Rheumatoid Arthritis […]

    25. lady red says:

      I’m on board 110%! Just let me know what I can do to help. This is amazing news!

    26. Jess says:

      Hi Kelly,
      You already know what I think about this new foundation. Congratulations. Contact me as soon as you need people. I’m available every day. As always, Good work! Job well done.
      <3 Jess

    27. Marie Levesque says:

      Please sign me up to help in some way too!!!

      •Well, your hands don’t look like you have RA to me.
      •Well, your blood tests look good so you must be in remission.
      •Well, you can’t even get RA in that joint.
      •Well, RA is not supposed to hurt that much, so maybe you have fibromyalgia or depression

      And just to add – all those have been said to me also!!! :(

    28. Ruthey says:

      Rheumatoid arthritis and other diseases aren’t proper nouns (except for like Lou Gehrigs)

    29. Judy says:

      Kelly, this is fantastic news, please let me what I can do to help, I can’t wait to get started. God bless Kelly, I for one do not know what I’d do without you..

    30. Caroline Ayala Rich says:

      Thank You so much for posting this! I have had RA in my right jaw and neck for years. It wasn’t until last month that my doctor said “low-grade inflammatory arthritis” because there was no other evidence elsewhere. He did start me on Humira. Hmm, that says something that he was not willing to admit a year ago. Thank You! I cried as I read the above article. Finally! Someone believes that it can be in the cervical area of the spine!

    31. Dori Herrick says:

      Kelly, you work so hard to make a difference. Very excited to read about the Rheumatoid Patient Foundation. I know there has got to be some work to be done to get this off the ground. Please contact me so I can find out what I can do to help!

    32. Good work, Kelly. All the very best!

      We definitely need initiatives of this kind.

      I would be more than happy to extend whatever help required to the foundation.

    33. Andrea says:

      I can TOTALLY relate to what you say!!!!!!! I really think the name of the disease needs to be changed!! I am so tired of the doctors, there surposed to be the experts and most of the time I know more than they do!!!! My strength come from God and my fellow sufferers!!! Only they truly understand each and every pain, etc etc that I go through and honestly I dont know what I would do without them!!!!!!!

    34. Camille says:

      Kelly, this is just another reason why you are my hero. You work so hard to bring info and encouragement to those living with Rheumatoid Arthritis. And yes a foundation for Rheumatoid disease is surely needed. I totally agree with you on everything. So yes, count me in, sign me up. Let me know just what I can do to help. In the meantime I will pray that God will continue to give you the the wisdom, strength and the courage to do all that you are doing to get the foundation up and running. And of course for all you do at RA Warrior. God bless you.

    35. I once read a book how angels walk amongst us. Now i believe.

    36. Dee Maxwell says:

      Kelly,
      You are a miracle. Thank you for having the initiative to do something like this. And like so many others, I can’t wait to help anyway that I can!

    37. sangichan says:

      I am so excited about this!!! Please let me know how I can get involved and when. Will the foundation cover Seronegative RA?

    38. miriam says:

      Hi Kelly, this is wonderful news! I’m all the way in the Caribbean, but whatever help I can give online, I will be happy to. Those doctors at Johns Hopkins may be trying a cover-up. I was diagnosed 5 years ago and within 2 years my cervical spine was affected, I suffered unimaginable pain and had to do several months of therapy for the pain to be ‘manageable’. I have also been diagnosed with scoliosis – and this is from RA! I believe many of us know a whole lot more about RA than a lot of the doctors!

    39. Turtlemom says:

      You go, girl! I’m so proud of you! You have taken leadership where none was, and run with it! I’m ashamed that I have not taken the time and made the effort to do this.

      Please, list the things you need done so we can volunteer for the things we can do, or are best at doing. I know you will post the website as soon as it is up and running. We all are waiting with bated breath for that announcement!

      God bless you! And what a wonderful time to announce it – during Bright Week (the week after Easter)!

      I pray that God will bless this organization and help it to blossom into a riot of bright flowers!

      Love
      Elizabeth

    40. Laurie says:

      Kelly, I am with you 100%. Whatever you need help with let me know, as I live close and am a good worker ant!

    41. Raynydaze says:

      Oh finally, you know I really though that the Arthritis Foundation was the patient foundation. I’m surprised that they didn’t have someone there to represent us.

      Tell me what to do to help you. I’m still trying to figure out how to make the Dr understand that I’m not just malingering.

    42. Beth H says:

      Anything I can do to help Kelly! I’m glad you are starting what we can see as a education point, hopefully aimed at the rheumatologists, the affected folks, their families and so on. We need this so much!
      Again, *anything* I can do to help.
      With much respect, Beth Henshaw

    43. Julie says:

      Kelly, this is such an exciting and busy time for you, and for all of us. I will be keeping you in prayer, specifically for strength, patience, and endurance, as you strive to bring all of this together. I know it will put extra stress on you, both mentally and physically, as well as on your family.

      Thank you for your sacrifice and continued use of your God-given gift of writing and leadership, that will benefit so many countless RA patients and their families and healthcare providers.

    44. Paul says:

      Thanks Kelly & well done to all involved. I look forward to the new site & believe that we can make a difference.

    45. Brenda says:

      Wow- This is great news Kelly, I echo the others. I know how hard you have worked and I know what a milestone this is. You have been so dedicated and persistent. Truly Kelly thank you is not near good enough- please let me know if I can do anything to help.

    46. Karen says:

      Dr. Nancy Scheinhost in Bryan, Texas, is a wonderful rheumatologist. Her PA, Amber Mick, is also a godsend. They listen, touch joints gently, and spend time with the patient.

    47. I haven’t been diagnosed that long but read about others and it’s about time there was a foundation for RA.

    48. Bethany Elfering says:

      I found it interesting that you mention the John Hopkins website. One other place people tend to trust the opinions of doctors is the Mayo Clinic. I visited the one in Jacksonville hoping to find a better treatment for my R.A. After two days of seeing doctors, they told me that there was no evidence that I had R.A. and that I should quit taking the medication immediately. After two months off the medication, I was left completely bed bound and unable to even stand on my own. It too two month of complete bedrest before I was able to walk on my own (due to the medication taking two months to build back up in my system). It is scary to me that organizations with such great reputations can derail you life out of a simple lack of understand of your disease. I hope your foundation helps bring about awareness and brings an end to such terrible medical care.

      • It’s very sad to me that I’ve heard similar stories a couple times – of having problems being diagnosed at that clinic. We all know that no place is perfect & it only takes one person to make a bad experience. Of course, I hope it’s not the usual there.
        Thanks for your good wishes & I hope you have good treatment from now on.

    49. Carol says:

      My son has RA, and has had it for 17 years. He was diagnosed when he was 17 years old and he will be 34 next month. He has one of the worst cases his doctor has seen. I believe he is at a point in his life where normal medication does not help him. He suffers terribly everyday. I am trying to find a trial clinic for him. I read an article about the use of placenta lining for treatment of RA. By a doctor named Omar Gonzalez. I am desperate how do you know what is legitimate. My son has had his hips replaced, his knees replaced, his wrist replaced, his other wrist fused. Then the artificial wrist had to be taken out this week and they had to take bone from his hip and fuse that wrist. The bones in his feet have been fused. His back is full of arthritis. They have yet to find a treatment that has slowed down the deterioration of his tissue Nd his bones. He has been on the retuxin and that does not help him either. What else is out there when normal meds do not work?

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