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Sunday, July 10, 2011

To Dream the Impossible Dream!

     Remission, cure, final treatment - terms and phrases I believed could be a part of my experience with RA.  That is, until a few weeks ago when my umpteen attempt at getting off corticosteriods along with the failure of my latest biologic medication finally began to make the likelihood of any of these things "an impossible dream".
     I have been "out of sorts" for several weeks and assumed that it was all about the pain and the flare.  About the fact that exercising was once again being taken away and knowing that, for me, that is like taking away my ability to breathe. Yet, somehow I sensed there was more to it but the full thought was just out of reach....
...I just could not put my finger on why I was near tears almost daily, why I was having sad and restless sleep (beyond what was caused by the RA normally).  I felt at loose ends, unsettled, like I was in a black and white world struggling to get back to the vivid color that was my life.  All of the things that normally pulled me back to a happy and positive place just were not doing it and I was, frankly, a little scared.
     Finally, yesterday morning it all became clear...I was heading back after Zumba class, driving home, shoulders screaming, feet on fire, and yet I knew that I had really taken it easy in class, stood to the back so no one would see that I could not lift my arms or pivot.  I was so angry that I could not do what I had come to love, exercise to music.  I was so angry that, despite my adjustments and concessions, the RA was winning again.   Angry because, once again, another exercise/sport that I had selected (tennis and running before this) was going to be taken away from me.  Angry because I planned to swim today and I wondered if I could lift my arms to do it or would RA take this away as well?  What would I have left?  What would be the next thing that RA would claim from my life? I began to cry, softly at first and then sobbing to the point that I had to pull into a side street and just take a moment.  So I did.  I realized what had been eating at me for the last several weeks. 
     I had been in denial for the last 15 years.  There it is.  Denial about what you ask?  I think I believed that I would go into remission permanently OR a cure would be found.  For whatever reason - maybe the 15 year mark - maybe the fact that yet another medication failed - maybe the fact that yet another sport was being taken away - maybe all of those...I was slowly realizing that those are not going to come true for me...not now and maybe not ever....
     So when I got home my husband asked how class went and....the floodgates opened and I cried and talked and cried some more and as I articulated my realization my husband said "we will get through this together.  You are stronger than the RA and we will deal with it".  He is not one to mince words and his simple response along with hugs was just what I needed.  I know that the sadness and fear are not gone for good but at least coming to terms with what was going on emotionally for me lately makes me feel "lighter", like a small candle in a sea of dark is being lit just for me.
     It is amazing how "talking it out" helps and I am so glad that I finally shared this and was able to sort it out.  I DID go swimming today, and my husband came along.  I jogged in the water and did some mild laps but just to keep the shoulders loose, not to make them hurt.  Then the hot tub and a nice breakfast and I was feeling better and better.  I can handle this, just need to vent sometimes and validate that what I am feeling is OK.   
     Maybe, just maybe this new medication WILL work and I will feel better.  Maybe, just maybe researchers will find a cure for RA.  Maybe, just maybe.


              "Reach high - for stars lie hidden in your soul.
           Dream deep - for every dream precedes the goal."
Nan

5 comments:

Jan said...

Nan, I am really grateful that you wrote about this. I am still grappling with the never-ending-ness of RA. After months of being on prednisone, I am finding that I can't get any lower as the methotextrate doesn't seem to be working yet--and I wonder if it will start working?

I am new to all this, but you help me to realize that my struggles are not atypical, so I do not feel so alone. I'm glad your husband is so supportive and that you could actually talk about how you're feeling. (I don't do that well yet). Swimming is good!!

deb aka murphthesurf said...

Nan...(((HUGS))). Sometimes I have these vivid dreams where I am ra free. Unfortunately I wake up in the morning. This post rings sooo true for all raers. It is just a question of when we get to this point. This is one long journey and I just know that once again the sun will shine on your path, you will find your way...I just know you will.

Thrive With RA said...

Hi Nan,

Thank you for sharing with us your candid feelings. I appreciate your sincerity. Your husband sounds so very remarkable. What a great team you two must be together!

RA does have a mind of its own, that's for sure. (It's reminding me today, loud and clear!) Thank goodness we have the power of our own mind and to have hope. Hope is something that RA cannot take away.

Your zumba class sounds wonderful, as does swimming. Thanks again!

TWRA

Gisela said...

Hi Nan,

I recently started following your blog, and I am still working my way through your entries. Having been diagnosed two years ago and doing well on MTX monotherapy, I am reminded now and then, when a joint flares or when I go for my bi-monthly labs, that I might be in "clinical" remission, but that I am definitely not in full remission. Although my limitations are minor compared to most RA sufferers (can't make a tight fist and can no longer do six-hour walks on European cobblestone streets), I am still having a hard time dealing with this new me, let alone accepting it. Reading how people, who have had this disease much longer than I have, deal with it, brings comfort and perspective. And I hope that you, too, will find that miracle drug/drug combination that works for you. Best wishes!

Cathy said...

You express yourself so beautifully. As I read this post, it touched something in me, a fear that I too always carry with me. What if feeling good for me right now is only temporary?

I'm glad you went swimming. It made me smile. I'm going to keep that image in my mind today. We are stronger than RA. We will keep finding things we love to do.