Anyone Else Lose Time Thanks to Rheumatoid Disease?

I lost another week. Anyone know where I put it?

sunset after track meetSeems like the left side of my cervical spine had an inflammation party this week. I ended up with some swelling that pinched the nerve going down the back of my arm and pushed a rib out near my shoulder blade. The orthopedic doc figures it will pass in a few days, and I agree, at least based on my experience. My neck is never “ok,” but it doesn’t stay at the “unbearable” level forever. I couldn’t get anything “accomplished” this week, yet steroids, muscle relaxers, and handfuls of ibuprofen are making it more bearable.

I feel frustrated with “bearable” when I’d rather be accomplishing something. On the other hand, when the pain is “less bearable,” I’m rather eager for it to go back to bearable. Do you ever feel like that?

When days are missing, can we ever catch up? Yes and no. No, some things did not or will not get done. But, I’ll always argue that we are ahead in other ways…

Hopefully next week, I’ll be more productive in the usual sense of the word. Meanwhile, hopefully my heart or spirit keeps growing in other ways.

3 important things I need to tell you!

1) The don’t-let-a-disease-win Blog Carnival is on. If you have any type of blog (does not need to be an “RA blog”), share your strategy for not letting a chronic disease get the better of you! Click here to read more.

2) Last week I posted the video of my speech at the Institute of Medicine. The video was there when I finished and went to sleep, but in a funny dog-ate-my-homework sort of move, it disappeared from WordPress by morning. It’s restored now, so click here to watch.

3) TWELVE new stories have been added to the Rheumatoid Disease Onset Story Project. I can’t begin to tell you the value they’ve had to readers and how much they inform others about this disease. In their own words, people share unvarnished stories of how their disease began.

Postblog: Thank you so much Mom for the airdesk so I could type this! And Happy Birthday!

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

8 thoughts on “Anyone Else Lose Time Thanks to Rheumatoid Disease?

  • March 29, 2013 at 1:52 pm
    Permalink

    The symptoms you described sound just like my symptoms I was getting when I found out I had bulging discs. It pushes on my pinched nerves and the pain radiates down the back of my shoulder blade and down my arm. Them I got tingling in my fingers. Its treatable for some tome with steroids or epidural injections but once treatment stopped working, I had to have surgery which is the surgery I’m healing from now. I hope that’s not what you have but an MRI wouldn’t hurt. :/ I know neck pain can get that bad cause mine is the worst out of all my joints so is sometimes hard to tell the difference. I hope you feel better soon. And yes, I feel like I’ve been wasting 2 straight years of mine and my daughters life cause all I’m doing is getting back to back surgeries and always healing from one. I’m always so fatigued or stiff and never get anything accomplished and have constant guilt for my daughter. Sees craving attention and acting out. I feel like im not doing good as a mom or housewife. Its pretty depressing some times.

    Reply
  • March 30, 2013 at 12:16 am
    Permalink

    I have polyarthritis and possible anklyspondolis. I was also diagnosed with PSA. Doctors don’t agree. They all agree I have degenerative arthritis and fibromalgia. I lose days and weeks too. My hips have been bothering me. My replaced knees hurt constantly. I am pushing through though. I am so glad to find fellow bloggers who know what I am going through.

    Reply
  • March 31, 2013 at 12:02 am
    Permalink

    Kelly,

    When I read about yours and others flare ups and the massive pain, I feel so bad. I feel bad because my heart goes out to you and then I feel bad because I’m so glad that I have not progressed to that point. You know, it’s the “I’m glad that’s not me” guilty feeling.

    I am so thankful that my new medication has seemed to get things under control for now. However, I never want to forget how I was before things were okay. I don’t want to forget that so many people are doing horribly.

    When I read this blog, it brought that all into focus, because that was me just not too long ago. Mop the floor? Type an email? Cook a meal? YOU’VE GOT TO BE KIDDING RIGHT? Then pretty soon the day was gone, then a week, and then weeks into a month.

    I want you to know that I have chosen not to be invisible anymore and I’ve decided that it’s okay to speak out. If people don’t get it, that’s okay. At least I’m being true to myself and those that love me support me in it.

    So, I guess I just wanted to say, that my heart is with you and all of us dealing with this disease. And I hope and pray that there is a medication that will ease your pain and eventually a cure for all of us.

    Reply
  • April 1, 2013 at 9:42 am
    Permalink

    Oh my, me too this weekend. Cervical spine especially C-1 and C-7. C-7 was inflamed and red. Ice packs and my pills were the diet of the day. Cold sweats were bad this time. Thank goodness I am only fighting the fatigue this Monday. In a fog today, but I am at work. I had to take 5 days off 2 weeks ago with a nasty respiratory infection. I have really no more time left to take off.
    I am so tired and wonder if I will ever go into remission. I will fight and not let this take me over. I will be tough!….ok after a nap.

    Reply
  • April 2, 2013 at 12:17 am
    Permalink

    Kelly, glad to see you posting again. Hold your head high (metaphorically speaking if your neck and back are acting up) and keep pressing on. It does get frustrating when RA keeps you from accomplishing your goals – especially hard for us type A folk! Your body is probably calling for some rest so put your feet up and enjoy it!
    Andrew

    Reply
    • April 6, 2013 at 4:21 pm
      Permalink

      It is frustating when you try to make plans and the RA prevents you from doing what you had planned to do. If nothing else this disease will teach you patience because you can’t tell it what to do.

      Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

    Welcome to RA Warrior!

    Welcome

    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

    Advertisement

    View more gifts at Zazzle.

    Let's Pin Together!

Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.