Hear My RA Interview on KISS FM! Plus Updates & Coupons
Over the last two weeks, I haven’t been able to write very much because of 2 roadblocks:
Do you have RA in your shoulder?
Lately, I’ve just cried and lay with heat or ice on mine. Some days, I couldn’t lift it forward from my side even an inch, no matter how hard I tried. At least this time, the left side was the only one so bad. It seems to be doing better today.
The other problem was a computer virus that disabled my laptop. It took a week, but the laptop seems to be back to normal.
It’s such a relief to have my computer back & to be able to move around. However, RA is limiting me more than it has in the past. I’ve said before that there is a disadvantage to having patients like you and me lead a movement since we are “sick.” This is also our great advantage: we know what patients need. I am holding onto that when I feel discouraged about not being able to get any work done.
Now for the fun stuff! Hope your summer is off to a good start.
1) Recently I was interviewed on KISS FM out of Seattle. It was enjoyable to talk with Jackie and I hope you’ll enjoy listening! You can also pass this link on to others to tell them about RA.
Click here to hear interview with Jackie on KISS FM!
2) Our T-shirt store has sent us a coupon good for the next week. I’ve copied the details below. Click here to see all our t-shirts, mugs, and barbeque aprons.
Coupon Code: DogDays
Discount: $5 off any order!
Coupon Code: Summertime
Discount: $10 off subtotal of $50+
Coupon Code: HotSeason
Discount: $35 off subtotal of $100+
Disclaimer: Please enter coupon code DogDays or Summertime or HotSeason before completing checkout. Discount is applied to the base price and does not include shipping, taxes, or additional charges. Email us if you have questions. This offer may not be combined with other offers. Coupons valid from 6/3/2011 to 6/11/2011 11:59 pm Mtn. Time.
3) Have you noticed the blue banner at the bottom of the page? This is an opportunity to participate in surveys or forums to give the patient perspective. Participants get rewarded with gift cards. This is a good opportunity to express your viewpoint with a little bit of repayment to you.
Recommended reading
- Something that really puzzled me: What is a Rheumatoid Arthritis Flare?
- Must know: 20 Tips for Managing Your Rheumatoid Arthritis Treatment
- Memorial Day, remembered: Memorial Day Tribute from RA Warrior
rawarrior brilliant Kelly, how do I sign up to follow your blogs? As you can tell I’m new to this blogging stuff. Lol
Hi Penny. If you want to get them emailed to you, there is a box to fill out in the upper right of the page. Then new posts will come automatically from Feedburner/ Google to you.
Kelly,
Wish we could help you as much as you help the rest of us…..hope you will feel better soon! I look forward to checking out the RA Interview now–one more amazing achievement of yours, I’m sure!
Vi, knowing your family has been a great motivation for me during rough spots. Thank you for caring about others. This is what makes our community so wonderful. And will give us success.
Whoohoo! If you had any trouble with the radio interview, refresh the page & click again. It’s fixed more better now. LOL.
Kelly,
I just finished listening to your interview and loved it. the part that really hit home for me was when you were talking about the grief process. I have had RA for 8 years and never had done that until recently. I started seeing a counselor about 2 months ago and it never had occured to me before that I needed to grieve for what RA has taken from me. It changed everything about my life. I have been able to communicate better with my family and friends about what I am going through, even though it has cost me a few friends, then again they probably weren’t real friends anyway. It’s really hard when I don’t know anyone personally that has RA, so your website and FB page have been a wonderful way for me to connect with others. I thank you for all you have done and are continuing to do and I pray that you are able to get some much needed relief soon!
Thank you Jodie. It was such a sudden thing for me back then that I think I was in a kind of shock. One day, I took care of everyone I knew, then suddenly, I need help to do even basic things like open doors or get my hair done. I have also come to realize that we can go through this process over and over as RA progresses or we lose another ability or something else. We have to guard against depression also with whatever it takes to stay as emotionally strong as possible. I’m so glad you have found good help.
FABULOUS interview!!! i love jackie ……..we listen to KISS (it’s a local station for us)
you two had a great conversation!!
my onset I totally woke up with my elbow so swollen it looked like a tennis ball plus……I thought how did I hit my arm that hard in the middle of the night and not notice??
wow on the fever discussion….i have them sooooo often..
cried most the interview …felt validated and understood
sincere thanks again Kelly!! xo
Thank you so much for your reply Jen. This has been a tough week. You make me feel the same – validated & understood.
Your story touches my heart. My daughter was diagnoised with RA abut 6-7 years ago but further testing (at her request after extensive research) indicated Mixed Connective Tissue Disease which is a combination of 3 or more auto-immune diseases. Hers are Lupus, Raynauds, and Sclerdema and maybe others. Her doctor put her on plaquenil which can have many benefits along with many side effects. She maintained the drug for 3 years and is now in remission. She also has acid reflux which has resulted in Barretts Esophagus. My heart breaks for you and people like you that must live in constant pain. My daughter has had the feeling that no one except me cares because her appearance does not show signs of illness other than a slight weight gain from all the past medications. God Bless everyone with auto-immune diseases.
Just wanted to say thanks Kelly great Interveiw and will be starting to think more about the Methotrexate treatment again.Thanks again David .
Thank you Kelly. I really enjoyed the interview. what you are doing for the RA community is invaluable. You are making a difference in the lives of so many people.
Great interview on KISS FM!
Wonderful interview, Kelly! You and Jackie didn’t leave anything out!! This will be a great tool for others to learn about RA and for patients who need validation and understanding… and for getting the bittersweet relief of a diagnosis.
Such a great, focused interview! You do the whole community such a service! I liked that you managed to elicit the story of Jackie’s friend. Everyone has a friend or cousin or other family member with RA. It affects everyone in this country, whether directly or peripherally.
Thank you so much for the work you do!
(By the way – I one of those who don’t really get fevers, but my rheum takes my temp each visit.)
Cheerio!
Elizabeth
I am sooooo proud of you Kelly – your interview with Jackie was awesome! You’ve done your homework and it was amazing to listen to. I am going to make my loved ones and friends listen to the interview…tell us how you’d like us to raise the volume on RA in our state or community. Gentle hugs with gentle tears. Hugs,
I thought his interview was wonderful. I know the arthritis foundation has seminars for arthritis patients. But I think someone should go to medical schools & hosipitals demanding all GPs and RA doctors come to a seminar where the patients get to educate them !!!
I second that motion! 🙂
We also need to keep orthopedists in that educational loop. We may be getting fewer surgeries due to better meds, but most are just being put off until we’re older. The new crops of orthos are going to have less experience with RA joint surgeries than the older orthos.
You were right on about the GP’s needing to be more educated. i went to a research Hospital here in Dallas and they backed me off my meds – I have been pretty much crippled for the past 6 months.
P.S. My previous comment is made as apositive, optomistic RA Victim for 12 yrs.
Kelly I thoroughly enjoyed listening to the interview! You did a admirable job putting out a clear picture of RA and autoimmune disease. Also, Jackie is a remarkable interviewer! I appreciated her understanding and knowledge of AI diseases. My family listened with me,adding to their empathy of my RA, and was much easier than getting them to read something too 😉 Thanks to you both.
Great interview!!!!!!!! This is such a wonderful site and I thank you from the bottom of my heart for maintaining it and getting the word out about RA. I was just diagnosed last month, although I believe I had palindromic RA for a few years…undiagnosed…in the form of bursitis in my shoulders. No reason I should have bursitis in my shoulders. So, I completely understand the shoulder thing. Just breathing can be unbearable when it hurts that bad! Glad you are feeling better! Keep up the fantastic work and thank you again!
Hey Kelly (and all reading these comments) – A big giant “Thank You” for opening so many doors and talking about RA so beautifully. It is a blessing to be able to hear a fabulous demonstration of how to speak from the heart about this bummer-of-a-disease without being a downer-of-a-person. Kelly, you are such a blessing to all of us. Kudos to you!
SO worth sitting alone in my bathroom to listen to your interview while my husband slept! Thanks for all you do for those of us who can’t sleep well because the sore shoulder wakes her up, or those of us who can’t wear her pretty sandals because her ankles are flaring, or those of us who can’t shake someone’s hand in greeting because way too many joints in the hand hurt, or those of us…never mind….I’m preaching to the choir. Thank you for understanding my shoulder, my ankles, and my hands. Thank you for giving me a voice. And thank you for helping me understand what I’m going through. Hope your shoulder is feeling better soon.
Jeanne
What a smile you gave me about the bathroom picture. It’s a good place for quiet phone call too. LOL
What a WONDERFUL interview! Great job!!!
thanks for the site – Its comforting to know Im not alone, Though I could use someone to chat with – family does not seem to understand.
nice name, Kelly 😉 Where do you live? Maybe there is a local group near you. You can read thru the Local RA Support tab & comments pages to see if you find someone.
I am in the Dallas Texas area – and dont know anyone with RA – but would love to find a support group – what meds are people taking – do they work- i feel my family really does not fully understand. As I type – My shoulder is “Killing” me – so are my hands/ hips _ ugh! so I read quilting blog – LOL
Kelly, there are several people I know in Texas – be sure to read thru this link with comments pages
awsome thx wish there chould be more people to help mak r.a aware you interviw gave lot of information thx
i am from south africa and youre blog gave me a lot of info specially on mtx how long is the mortallty rate in men????
Hello. I only recently found your blog and I am so happy I did! I have a question about a treatment I am researching…it does not fit with this post, but I don’t know where else to put it, so please forgive me! My question is about an antibiotic infusion treatment. The comments on the doctor’s website testify to wonderful improvement and even getting back lost mobility, but obviously, it is his website and he can put on it whatever he wants. Have you or any of your contacts and friends heard of this treatment? My research shows there are only 2 or 3 physicians in the country who do it. Not covered by insurance. 3 week treatment that one doc calls a cure and one calls a treatment. If it works, it would be amazing, but I don’t want to get taken in by a snake-oil salesman…Thank you so much!
I’d do more research, Melissa. And maybe take the info to a rheumatologist to see if they’ve heard of it. I have heard of oral antibiotic therapy and there is one post here on that – click here. Like you, I’m skeptical. Some people do have success because they actually have a different diagnosis such as reactive arthritis.
Kelly……
This is just a great Interview!!!!
I’m downloading it.
Thanks
Sometimes I believe my computer use contributes to my shoulder RA. Check you ergonomics carefully, especially your dominant (mousing) hand. Two years ago, I had the most deteriorated shoulder “rebuilt” to improve functionality and hopefully prolong the joint until shoulder replacements improve. Five different small procedures bundled into one day and 6 weeks of complete no movement and 9 months of rehab. At least I usually have function and the pain is bearable most of the time. Remember small movement repetitions aggravate stressed joints so stretch/range of motion frequently while using your laptop. If your mouse is not comfortable for you to use, find one that is easier on your hands, arms and shoulders. Prayers and huggs always.
THANK YOU for posting this interview! I just shared it on facebook, hoping to bring some education to my family and friends. They just don’t understand, but hopefully after hearing this they will.
Validation! Validation! Validation! This interview said everything that I knew in my heart to be true about my particular case. I started with excruciating back pain that I had for almost 6 years and nothing helped not even pain meds. Went to ortho’s, neuro’s, back specialists, therapy, …. I noticed that my knee was hurting as well and when I told the ortho I was seeing at the time that maybe it was RA he said somewhat sterning that back injections was the only perscribed treatment for me and he was clearly annoyed. I knew that wasn’t the answer. I had been tested for RA and it came up negative several times. Got into my car, cried my eyes out and prayed for an answer. Shortly after that I woke up with my shoulder feeling “shot”. Not the answer to prayer that I was hoping for. Decided to go to Rheumy and low and behold he diagnosed me from my symptoms, ran my sed rate for confirmation. It was indeed RA. He still doesn’t believe I have it in my back though. All the doctors seem to go by the mri evidence of disc issues. I don’t agree. But I am getting some relief from metho and humera. Although I don’t think the humera is working as well anymore. Increasing flare-ups.
Thanks for this web-site. I love that you are taking something that has come against you and turning it into good for so many others. The ministry this web-site brings to me helps make me so much easier to get along with. It eases my frustration when I feel no one understands.
You are a treasure to us.
Thanks, Arlene!
Pain all the time. Even with the medication it never goes away. I forgot what it feels like not to be in pain. The RA doctor is good,but I am treated for my labs not what I feel. I read the article as to go by what the patient is feeling. Labs to me are the easy way out sometimes. Im going to try Holistic medication to see if I receive a better responds to my pain. Keep these articles going they help me learn a lot .