Monday, January 31, 2011

I Am A Different Person Now

I had an appointment with my rheumatologist today.  It was a little weird.  I didn't have any of the anxiety I often have with appointments to this office.  In fact, I was very calm.  She went through her routine of questions and had me do my routine of movements.  They were all so easy.  Last year at this time I was struggling to get on the patient bed because my shoulders and wrists were in so much pain. I remember they lowered the bed and then it hurt my knees to bend down.  Today everything was easy.  In fact, I didn't have a second thought about jumping up on the bed. The only complaint I had was about my feet and toes which have been hurting quite a bit the last few weeks.  She gave me a referral to see a podatrist.  I will think on whether I want to go that route or not.  My white blood cell count was down in previous blood work, but is within normal again.  In fact, all of my blood work is "really good".  She was happy I haven't been sick at all this winter or suffered any infections.  My last chest x-ray did show some scarring.  I am not really sure what that means, but she said we will do yearly x-rays to monitor it.  She also took a look at the nodules on my elbow and shoulder.

Towards the end of our visit she asked me to explain how difficult it is to get out of bed.  It was with this question that I realized that physically and mentally I am a different person than I was eight months ago.  I am different because when she asked that question I realized that I don't think about getting out of bed anymore. (Tears of happiness streaming down my face right now as I say this.)  It is just a normal routine for me again.  I no longer wake up and wonder how I am going to roll out of bed without crying in pain.  I no longer worry about my joints being so stiff and weak that they won't help me out of bed.  Rheumatoid arthritis pain no longer consumes my every thought and action. I am different now.  I know that at any time I can wake up and be that person again and it does scare me, but I am where I am now and it is a great place. 

Feeling constant pain bogged down my mind more than I ever imagined and it took being free of that pain to realize the happiness I feel at this very moment.  My rheumatologist kept asking me questions about pain and finally I just said, "Really, except for a few minor flares, life feels normal again." I have come a long ways and I can't stop feeling giddy with excitement at the little gifts that life has given back to me.        


  1. That is so exciting, Cathy! It's amazing what a difference the right treatment can make. I hope this works for you for a long long time.

  2. Thanks WarmSocks! It feels so wonderful to be sharing this news with everyone and especially to be feeling this good. Thanks so much for you warm thoughts.

  3. Congratulations on such a wonderful report. I know you've had your ups and downs, but this is marvelous news. All the best.

  4. Hurray!! I bet your doc is pleased. Probably not as pleased as you though :) I had a check up today too, as did Laurie at Frozen Woman. Strange!

  5. Cathy, I am so happy for you that you finally got your remission...or darn near as close as you are going to get.

    When I get discouraged I remember how difficult things were for you and now how you are exercising and doing so well.

    I hope I get the same chance soon.


  6. I'm so happy for you, Cathy. You've come SUCH a long way in the last year, and it's been so good to read your posts about how well you've been feeling. You're very strong, and your experience with rheuma has made you that much stronger. What a gift.

    Sending some big, warm hugs your way, along with hope that you continue to feel great.

    P.S.: Oh, go ahead and see the podiatrist. Maybe he or she can relieve the pain in your feet and toes, too. You'll be cruising along even faster!

  7. What a wonderful post Cathy. I am so pleased for you. You have suffered much and as I read your words, I am struck by how lucky I am not to have ever dealt with such a debilitating process. You are always in my prayers. I love you and am so proud of you!


  8. Cathy, that's awesome! It's such a wonderful feeling to be able to do normal things again isn't it? I'm so happy for you! And to feel this way in winter! wow! that's great :) Hope this continues to work for you and every day is more a blessing than a struggle!

  9. I am so happy to hear that you are doing a lot better than you were a year ago. Also happy to hear there have been no infections. “Normal” is wonderful my friend and I am so very happy for you and I wish you many pain-free days and months. Here is to continued progress!

  10. This is a great report Cathy, I'm so glad you are doing better. It IS a bit scary (knowing that at any moment we can regress), but just enjoy each day and don't live in fear of it. Again, from where you were just a few months ago, this is amazing.

  11. Cath, I also am so thrilled to hear that the medications have improved you SOoooo much!

    What I am concerned about is this:
    "My last chest x-ray did show some scarring. I am not really sure what that means, but she said we will do yearly x-rays to monitor it. She also took a look at the nodules on my elbow and shoulder."

    This is a potentially life shortening extraarticular symptom of either the RA itself, or a side effect of the medications - unless you have scarring from previous pneumonias or chest infections and it is not active, but you can't tell without a chest CT. The fact that "scarring" is being seen on an x-ray already makes it more potentially concerning.

    If you have not been referred for a chest CT, without contrast, and for FULL Pulmonary Function Testing (pft's) then your rheumatologist is not up to snuff on this particular aspect of the disease and treatment. Is this new scarring or old scarring? You NEED to get a BASELINE chest CT and a baseline PFT done NOW, and then get another of each in 3 to 6 months to make sure there is NO PROGRESSION. IF there is no progression after the first two CT's and PFT's, then you can consider going back to yearly chest x-rays and FULL pft's to monitor providing you get no new respiratory symptoms. Rheumatoid Interstial Lung Disease can still progress even if your RA joint symptoms are under control or improving. It can be that it was progressing while you were off of meds and the meds are keeping it in check now, or it could be the meds causing it now if this is new scarring or if you don't know if it is new scarring if you don't have previous fairly recent or recent chest xrays. Alternatively, it could be interstitial lung disease due to something else entirely. Having lung changes with RA is NOT uncommon and it does NOT portend the worst in many cases, but there is no way to know without MONITORING/testing and keeping track of it. The lung disease can progress for a long time and become very serious before you physically become aware of it, so it's important to keep on top of it. If you have any questions let me know. I can fill you in more.

  12. Thank you everyone for the amazing words of support. Your encouragement, prayers, healing thoughts and cyber hugs have always inspired me and lifted my spirits.

    Rheumatoid arthritis is definitely a disease that plays with your mind. I often find myself scared beyond belief and then feeling like I am doing all that I can for the moment and completely satisfied with that.

    Wren, I know, I should just see the podiatrist, right? You know me though, I have to put up a fight first! Also, the rheumy recommended thinking on it a few weeks to see if this is a flare that might work its way out.

    Squirrel, I hope your appointment went well!

    Melissa, as one of my blogger friends I have met in person, I know you understand the joy I feel with this turn around. I hope the same for you!

    Carla, thanks so much. It is amazing to feel so good.

    Mike, the prayers you and your family say for me have been an amazing source of strength for me over the years. Sometimes on my worst days I would remember that you were praying for me.

    Leslie, I am waiting to read your post about the great things that are happening for you. :) I know when you are gone long periods of time that amazing things are happening for you, but I love to read about the treatment plan you are following.

    Lana, thanks for your words. :) "Normal" is wonderful.

    Terry, enjoying each day is what it is all about, isn't it? Feeling good definitely makes it easier.

    Chels, thanks for your concerns. They are appreciated. I do feel very confident in my current rheumatologist, but it is always good to read up on things they might miss so thanks for sharing. I didn't mention in my post but she is planning a follow-up on the scarring in April.

  13. Cathy,

    I've been a little behind in reading your blog posts, and just stopped by to catch up-I was *so* thrilled to read this post! I feel so happy for you, that you are doing so well, and have such wonderful news to share with us.
    You have been so incredible in striving for good health and listening so well to your body.
    Sending thoughts for continued healing and many more good days:-)
    Lots of love from Kate Brabon xx

  14. I love those moments when the miracle of wellness hits you. I still get awestruck if I think about it.