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Hi Kelly,
I’m the mom of Julia of Julia’s Journal. Your daughter found my daughter’s blog and left a nice comment. They have a lot in common.
I, too, have RA for 12 years now. I am so sorry to hear that you are not doing well. We homeschool and used to live in the same state as you do.
So nice to “meet” you!
Blessings,
Gloria
Thanks Gloria,
Seems like we have a lot in common.
Love your snow pictures – that we don’t have in common. I am in Florida!
But I love snow as much as I do the beach!
Hi Kelly,
I learned the same lesson, having been diagnosed at 22 and having severe enough RA to warrant getting both knees replaced at 26. I learned quickly to just be vague, say I had joint problems in a tone that didn’t particularly invite questions, and deal. Otherwise a question or two becomes an entire conversation explaining RA vs OA, different treatment options including the latest quackery, and the inevitable “but you’re so young!” as if that actually made a difference to RA. Like you, I could write a book or two about these encounters.
Mary, I love your way of putting that: “a tone that didn’t particularly invite questions, and deal.” Wanna collaborate on the books? ;-D
Kelly,
There’s the old saying- “If you’re not part of the solution, you will be part of the problem” With your blog, you are now part of the solution- helping us deal with RA and helping others to learn about it. Dorothy faced all sorts of challenges on the yellow brick road. Your blog helps us face our own RA challenges.
Sally
Sally! :-)) My friend who wrote me the letter reallly is named Dorothy. I love your extension of the analogy! Thanks.
Thank you for your blog…I have had RA for about 15 years and it has gotten progressively worse. I just got approved for disability because I can’t do my job anymore, I’m a Realtor. One of the hardest things is that no one understands. They all knew me when I was an active, successful Realtor, and now I think everyone just thinks I’m being lazy and don’t want to work anymore because I’m 59..It really does take a toll on me, and I don’t have any health insurance, and am trying to get Humaira from the company to try. I’m nervous about trying the biologics, but am willing to try anything to feel somewhat normal again. It’s nice to know I’m not alone and some people do understand what I’m going through.
Hi, Anna. Most people get a lot of improvement from the Biologics – good luck with the Humira people. You are definitely not alone.
Hello, Thank you for the article, as i have struggled with this first hand, I am on disability and my RA doctor told me i have the worse kind RA as it never really lets up i basically hurt everyday as a lot of us do, but i have a sister who is a RN AND EVERYONE IN THE FAMILY LISTENS TO HER, she tells everyone i should not be on disability that RA is just a little worse than other arthritis, What that means i have no idea, but it shows the ignorance about RA, IM GLAD YOU SPEAK FOR LOT’S OF PEOPLE WITH RA , HATE TO USE THE WORD VICTIMS BUT THAT HOW I FEEL AT TIMES,
Kevin
Hi, thanks for your post. I have Lupus, not RA, and I experience much the same outward reactions you and others have described. It takes courage to put it out there everyday when you feel like **** and the response is unsympathetic. I, too, often say Fine even with friends because I don’t have the energy or stamina to do otherwise. Speaking up and educating as one is able is the one thing we can do about chronic illness.
I found your blog a while back and am “catching up” a lil each day, reading & relating to many posts. I have found that I have so much in common with you & all the others.
I can so relate to “the wall. I had a difficult time telling people, friends, of my RA diagnosis. Also, I had a really hard time “letting myself” apply for disability, like that was the point where I “gave in” to my disease. I now realize these were classic denial stage of grieving feelings Funny, I’m an RN but I still had a hard time with “coming out” & this is a testament to just how prevalent, long standing & deep these stereo types run about chronic illnesses where we “dont look that sick”. I am so tired of the sneers when I park in the handicapped parking, using the motorized carts or having to repeat my requests for a more comfortable chair, etc, etc, etc. so I am learning how to ask. One of the hardest things for me is wanting to do things for myself because its so true, the quote about “if u want something done right,…
I still cant seem to get my family to grasp the physical RA. I think at times its a lofty goal to expect them to ever understand or appreciate the emotions, depression & grieving side of RA!!!
Like a true RAW, I will fight on for awareness & acceptance, both for self & for others!!! Keep up the good fight!!! -Mel