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14 Responses to “Rheumatoid Disease Awareness Expands”

    1. Joanne says:

      Hi Kelly,
      I was diagnosed almost 6 years ago and it never ceases to amaze me how little is known about this disease. The general public is pretty dismissive of its impact on one’s life style and I’ve often been given that “just shut up” look because no one wants to hear about it. Other diseases are recognized for entire weeks or months but we struggle to have recognition for a single day!

      • I have lived with the same reactions for 12 years now, Joanne. For me, most of it has been when I needed small accommodations that were refused or family members and friends trying to “teach me a lesson” to stop acting like I can’t do something, etc. Like I always say, I can’t “learn” the lesson, because I’m not making it up…
        This day is an accomplishment, but you’re right—awareness has not reached the level that we need.
        For some of us, the impact on “life style” is immediate. But what I’ve tried to make known is that it’s more than that—this is a life-shortening disease through several means.
        We must remember that increased awareness will bring increased research funds—which will one day bring better treatments and a cure.

    2. Dear Kelly,

      Congratulations on this huge step you’ve helped get born for RD awareness day!! I think it’s amazing that there are so many billboards all around the country!!

      For rheumatoid arthritis day I’ve created a step by step guide to making a one page medical summary that empowers those of us in the patient’s seat and that will help our doctors listen.

      It’s designed for anyone with a chronic illness to save time so you don’t have to rewrite the same notes for every new visit and so we have a cheat sheet to help us remember the little details, lab and other test results and more.

      I was once a former family doctor and developed a debilitating chronic illness (mine is chronic fatigue), so this is something I created for myself and decided it would be helpful to share.

      I hope it’s helpful.

      Here’s the post.
      https://chronicillnesstraumastudies.com/patient-medical-history-new-doctor-appointments/

    3. Kim aglietti says:

      Today is rheumatoid arthritis awareness day. Had surgery this morning to remove a bone fragment from my knee. Today I remember my favorite Aunt who suffered from this crappy disease for decades with very few options for treatment. She had gold shots at one point. Anybody remember gold shots?

      There has been much progress since then, so many new drugs, and yet here I sit, knee propped up on a pillow. Surgeon said I have severe synovial inflammation and fluid in my knee replacement, despite all those amazing new medications. He said, something about my treatment needs to change. I laughed. Changed how? To what?

      Sulfa allergy and asthma have eliminated most of the DMARDs as options for me. Two bouts of two different types of cancer means I’m not allowed most of the biologics for five more years. Rheumatologist says the rituxan and minocycline I’m on are pretty much it.

      So, I’m thinking, awareness is a start but not nearly enough. But I’m still celebrating. So far, my post-surgical pain is less than my pre-surgical pain. Yay? Bye bye bone fragment!

      • Thanks for reading as you recover, Kim. I pray your knee continues to feel better.
        You bring up such a good point. Perhaps a majority of us have nothing that significantly helps after cycling through all the meds and eliminating those that harm us too much. I’ve never had a dmard do anything for me (aside from serious side effects). But I know others who have.
        But the convo you share is key. Docs often don’t realize that is our situation. I’ve had that same convo several times, including this week with my knee doc. Sometimes it’s the drug commercials that convince docs that there’s good medicines available for all now.
        Also, as I mentioned to Joanne, awareness is a key means to the ultimate end of better meds and a cure. Awareness of other diseases has led to increased spending that brings meteoric advances in knowledge of the disease mechanisms. We need more of this basic knowledge in RD.
        Best wishes.

    4. Tony Kitchell says:

      I couldn’t believe it in my small town of Monroe With there is a billboard announcing rd awareness day.

      On another note Kelly please use your influence to petition Medicare to stop these stupid opiod restrictions their talking about implementing.

    5. CathyE says:

      Hi Kelly
      I am so happy to hear about the billboards. Even some Rheumatologists aren’t really aware of what this disease is like for those of us who suffer with it daily. I Was diagnosed just three months ago and I cannot seem to get my Rheumatologist to look at anything but my hands! The frustration is sometimes maddening. Thanks for all you do to put RD out there instead of allowing this disease to lurk in the shadow of ignorance. I don’t know you personally but I am nonetheless proud of your efforts.

    6. Kelly!!!! I have been driving past the billboard in Providence on my way home from work for a little bit and had NO IDEA that you were part of it!!!! SO awesome!!! I am even prouder now and will be sure to point it out to people.

      Thanks for all you do!!! RD Roar!!!

    7. Jennifer Tucker says:

      Kelly,
      I am so grateful for this website. And I’m grateful for Rheumatoid Awareness Day. I didn’t realize we had a day or a ribbon. As someone who has coronary artery disease, I have celebrated Go Red For Women during the month of February. As someone who suffers from RD, and it IS a suffering, I will remember from now on that our day is on February 2, and I will celebrate accordingly.

      Several months ago, I had my husband read several RD web sites. I really wanted him to understand the disease, as much as one can who doesn’t have it. I wanted him to know that there were days that I could hardly move, and that I was so tired I was cross eyed, and that I wasn’t being lazy or a hypochondriac.I don’t think he ever though that, but just in case… He read those articles and though he has always been sweet to me and treated me as he should, he has been particularly understanding since reading. My point being that awareness DOES help.
      Today, I bought my husband one of your t-shirts that says I love someone with RD, and I bought one for myself that says “I woke up like this”. I’m hoping that by wearing them, it will increase awareness just a little bit.
      Again, thank you for all you do here. I come to this website when I’m feeling low and I know I’m not alone. This disease can be a very lonely disease. Invisible and debilitating as it is.
      Jennifer

    8. Ravi kumar says:

      It is great to see this awareness day on rheumatoid. My mom is also affected by the same.

    9. Jennifer says:

      I am so proud of all of the efforts to educate the public about rheumatoid disease. I was, however, disheartened from what I learned today… I applied to my employer (public school system) for “sick bank” – past salary donations due to RA related illnesses. I teach kindergarten. I was told by the teacher’s union secretary that Rheumatoid Arthritis is no longer covered because it isn’t “catastrophic”. Apparently, the successful use of bioloics for many was the reason. I was speechless. Where do I go from here?!!

    10. Sabrena Moore says:

      Dear Kelly,
      First, I’d like to say thank you for the info you provide on your website! It’s a big help for me, as a newly diagnosed RA patient. RA awareness is so important and where I live, people seem to know so little about this disease!
      I was just diagnosed about 2 months ago & it’s been really hard. The only rheumatologist that accepts my insurance can’t get me in till the end of June! So, for now, my family doctor is treating me with steroids bcuz that seems to be the only thing that helps. Although, I’m a brittle diabetic as well, so the steroids are really making my blood sugar go pretty high, even after my insulin dosage has been increased. The thing is though, my doctor tried taking me off the steroids last week & after just a few days, my joints started to swell & flare up really bad, so he had to put me back on them.
      I’m so new to all of this & honestly, until 2 months ago, I knew nothing about this disease, I had no idea how debilitating RA could be! I’m reaching out to you as someone that feels all alone & scared of what is happening to my body. I was so swollen when I was diagnosed that I was in the hospital bcuz I could barely walk & I couldn’t do much with my hands, not even simple things like my personal care, it was a nightmare! I had been like that at home for 3 weeks, then was hospitalized for a week before they found out what was going on with me.
      I also wanted to mention, I read that you homeschool your children, I also homeschool my daughter, she’s in 5th grade.
      Do you have any advice for me or any tips?
      Thanks for taking the time out to help those of us suffering from RA!!! It’s much appreciated!!!

      • Dear Sabrena,
        I’m so sorry you’re going through all of this. I hope the new rheum doc will be able to help find a treatment that works for you. It is hit or miss – so don’t give up if the first thing is not the one. Yes, steroids are the only thing that works on “everyone.” There is a cost as I well know, but it’s also impossible to stay in bed permanently when you have kids or responsibilities…
        As far as homeschooling, I have only 1 student left – the rest successfully graduated. I’m very proud of their great success after homeschooling – proud of them and that we homeschooled.
        Tips? I should write a whole blog post – I’ll put it on my list.
        Here are a few though.
        Never forget that each one’s needs are different. I believe you will be guided to give them what they need. It’s OK if you don’t continue to do the same thing every year. Change it up as needed based on what you can do. We used to travel to historical places and write about it.
        I recommend including “real life” tasks as learning. At her age, teach her to mend or cook dinner for the family – give her goals and grades for Home Ec and she will be proud. We do a PE class now with other homeschoolers, but my older kids used to play on football teams or take tennis lessons and all that practice was our PE. As my RA has gotten much worse, we are incorporating a couple of online classes – most states have them for free. He took camera that way this year and learned so much. Yes I had to buy a camera, but he’s learning a skill he’ll use forever. At 9th grade and up, my older kids took classes at the community college for Dual Enrollment credit (college credit they really used) and learned things like Art, Spanish, or ASL—that I couldn’t teach.
        I still do the basics like math, science and history. I choose books that have very small bites day to day—no grand scheme or planning book.
        Don’t feel stuck in anyone else’s mold – even your own. I hope this helps encourage you—I’ll try to write more on this.

    11. Amy says:

      Hi! I just want to say that today I found your site, and I was thrilled to see you referring to RA as what it really is–rheumatoid disease. If we want people to stop comparing our disease to their grandfather’s bad knee or their own tennis elbow, the “a” word certainly has to go!! Looking forward to reading more about what you have to say about this life-changing illness.

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