Friday, October 7, 2011


Missing in Action ... that pretty well describes the past month for me.  We've had a serious family illness/surgery, I've been swamped with doctor's appts, and I have floundered so much mentally and physically with my RA that I didn't feel I could make a meaningful post - I am in a difficult transition period between treatments, and really don't know what to think, so why record *that* for posterity.  :p

Today marks one year since my "official" diagnosis with Rheumatoid Arthritis.  I think I'll mark this day by noting some interesting things I have learned in the past year:

*There are people out there who understand.  One of the best things that happened for me this year was finding the RA community on the internet.  Having that outlet and information resource has literally saved my sanity in a world where the public (mis)conception of RA is that we get aches and pains in our joints, pop a pill, then go out and buy a new pair of red high heels.  I have learned so much more from my fellow RA patients than from my doctors, and so much more from my doctors by asking the right questions because some who have traveled this road before me shared their experiences.

*I can do anything (I vaguely remember believing this when I was in my twenties, before cynicism reared its ugly head.)   There is something to be said for being forced to reinvent yourself.  Many of my favorite activities are out; chronic pain and fatigue severely restrict my social life; doctor's appointments, procedures and medication side effects keep me from traveling unless it is planned with military precision.    The mental exercise of prioritizing and adapting has been good for me, and I now know that there is nothing I can't do if I want it badly enough - kind of a psychic cleaning of closets.

*You must be your own advocate.  RA treatment is ever evolving; doctors can be behind in the latest research & treatments; factions in the medical community can disagree.  Experiencing my first year of full-blown RA has made me fully realize that this is my body, my disease course, my treatment choices, and it's okay to question, to research for myself, and to go against the grain if it's in my personal best interests.

 *RA is not a death sentence (unless I let it kill my hope, strangle my independence, bludgeon my zest for life - then I might as well be dead.)  It's natural to be depressed sometimes and I know there will always be good days, bad days and occasionally very bad days.  But each day is an opportunity to choose how I will live that day and I value the good ones even more than before.  I will make good use of the good and I will get through the bad.  I will not let fear of the future prevent me from wringing everything I can out of a good present.

*The reason wisdom comes with age is because mortality puts things in perspective.  For the first time in my life, I can actually see my reduced life expectancy and potential disability from where I stand.  Take my word - that puts things into crystal clear perspective for you very quickly.  No time to waste, I now know what's truly important.

*Next year will be better.  See all the above. 

Here's wishing all my fellow travelers Love, Hope & Joy.  Don't sweat the petty stuff (and don't pet the sweaty stuff).


deb aka murphthesurf said...

How far you have come, how much you have grown over the pass year shines through in your post. You will survive, you will continue to grow, and more importantly you will continue to celebrate every single day the best you can. I can only hope that the recent stumble is being resolved and that once again you can go back to the "normal" humm of living.

Wren said...

RA does have a way of clarifying life, doesn't it. You've certainly learned a lot during the past year--and your attitude is such that you'll be able to live and thrive in spite of the disease. Thanks for sharing your thoughts with us. I hope that life will soon reach balance for you. Here's wishing you warmth, comfort, and quiet joy.

The Rheuminator (Jackie) said...

There is something so healing for me about the exercise of recording my journey. It's such a huge added bonus to know that others may read my posts and identify. Thank you, thank you, thank you, deb and wren.

kimberly said...

So glad you are back- I'm sending you good wishes to carry you thru and past a tough month. Wish I could help you as much as you have helped me, and my mom, and my husband. I'm a recent recruit to the Ra world- and your blog was my gateway to the RA online ommunity-you were the first person who described what I was feeling,the first person to make me laugh in recognition of the struggle I was going thru- and more importantly, your blog has given my mother and husband a different understanding of Ra, and what it is like to live with it. THANK YOU FOR THAT- I owe you one! I sense I'm at the beginning of a long journey- but I take solace and strength in knowing that the path is being walked by many people of great courage, humor and compassion-