Comments on: 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me

By: Sherrie

Sherrie — Thu, 08 Dec 2011 04:38:57 +0000

Hi Kelly,
I too have Hashimoto’s and have nodules on my vocal chords. I was having issues with my voice and my Rheumy had me see an ENT who discovered the nodules. Neither of them attributed it to my RA. In fact, the ENT said it was because I am a manicurist and talk all day long. Ha Ha, ok. I never knew it was due to the RA until today. I have also asked my doctor about getting a handicapped plaquered and was told I didn’t need one. These doctors sure seem to think they know what they are talking about and what is best for us. Boy, I wish they could have just one week to feel like we do. I’m sure they would change their minds rather quickly.
I do have to say though, I feel pretty lucky after reading many of the posts on here. I have had RA for 10 years and am doing quite well. I do take a buttload of meds as well as Orencia by IV once a month, but I am still able to work everyday and mostly have minimal pain. Of course that can change at any given time, and has, but I feel very blessed to be able to continue to work and run my business and feel fairly well most days.
Thanks so much for all you do Kelly. It does make such a difference!!!

By: Sassy

Sassy — Wed, 07 Dec 2011 20:01:03 +0000

In regards to post 16, sorry but RA is not curable, it can go into remission, however it never goes away, it’s always sitting there quietly in the background just waiting for the opportunity to wake up and kick your rear into oblivion.

By: Marcia Blair

Marcia Blair — Wed, 07 Dec 2011 15:33:40 +0000

Kelly-
This is a great post. Thanks so much, especially for the info about how to spare your joints further damage. You are an angel

By: Debbie Cherry

Debbie Cherry — Wed, 26 Oct 2011 14:13:52 +0000

I have asked my RA doctor for a handcapped tag. I even sent in a completed form for him to sign. His assistant called me and told me he said to wait until my next appointment (6 weeks away) and we would discuss it. What does it take for this guy to realize that I can’t walk?! My RA started in my feet and toes. It’s excrutiating at times to the point that I can’t walk around my house, much less across an entire parking lot to the grocery store. And on another topic, how often should my RA levels be checked? I was diagnosed about 5 months ago and have not been retested since. My RA doc said he only tests my levels once or twice a year. Is that normal?

By: Turtlemom

Turtlemom — Fri, 11 Feb 2011 19:11:34 +0000

I didn’t even know to mention my vocal changes to my rheumy until I read about it here. Soooo, last week (Feb 2011) I mentioned that my voice range had changed and that I no longer can carry a tune (I HAD perfect pitch, and WAS a very wide-range alto, able to sing any part from 2nd Tenor up to 2nd Soprano, but most comfortable in the alto-contralto range). He said, “Oh, yes! you probably have the crico-arynoid joint inflammation.” Just DAMN! RA – the gift that just keeps on giving! I always felt elevated, and that I was giving a gift back to God when I chanted in the choir. I can no longer direct (neither can my husband who was the primary director), and can no longer chant the services. What else is this disease going to take away??

Sorry, I don’t usually complain like this, but to no longer be able to sing – at all – not even to my grandbabies – that just isn’t something I can be accepting of.

By: Kelly Young

Kelly Young — Thu, 21 Oct 2010 19:49:35 +0000

Thank you, Sadie. I wish you the best with IVF, too. I hope your friends & family will understand more of what you are going through as they read. We do have one post on pregnancy with some resources listed & some good advice in the comments page if you haven’t seen it yet - click here.

By: Sadie Cason

Sadie Cason — Thu, 21 Oct 2010 16:31:23 +0000

I am 26 years old and recently diagnosed with RA. I am only taking steroids for pain management because my husband and I are trying to start a family. We have been told that due to some other factors we can only conceive through IVF. We are not sure what steps to take next. Finding your site made me feel like I was not alone. I even shared it with family members that could use some more information on RA. Thank you so much for maintaining this website so we can all have something to hold on to. It give me hope knowing that there are so many other people that have fought through this disease and still managed to live their life. I wish you the best with your situation.

By: Tweets that mention 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me | Reality check | Rheumatoid Arthritis Warrior -- Topsy.com

Fri, 15 Oct 2010 21:25:45 +0000

[...] This post was mentioned on Twitter by Cindy and Kelly Young : Why do I hear this every day? Doctor rolls his eyes instead of treating patient: http://bit.ly/9b5kV9 #hcsm #rheum cc: @MDchat @ACRheum [...]

By: Kelly Young

Kelly Young — Fri, 15 Oct 2010 19:43:11 +0000

That’s why we have to find a doc who doesn’t discount what we say our symptoms are. Good for you for moving on until you did Cindy!

By: cindy pacleb

cindy pacleb — Fri, 15 Oct 2010 19:34:36 +0000

I forgot to add. finally when I changed rheums she checked out all my complaints about neck and back pain and found I had a major amount of RA in my neck and spine.