Sunday, November 28, 2010

Be the change?

 "Be the change you wish to see in this world."  Ghandi

I love this quote.  It is so very simple and yet so very all encompassing.  This afternoon, I bought one of those "wall art" sticker thingies that says exactly that and I have placed it within sight of where I sit as I write this.  Tonight, as I sit and sip cappuccino at my desk I am pondering this quote and how I can take it and apply it to my life.  

I am hoping that I can take it and use it for my health in general, and my weight loss efforts specifically.  I am hoping I can use it for my relationships and in my work.  I am hoping I can find a way to get my own life to where I would like it to be and then take it further and use it in my community.  I think I will make it my new goal:

Be the change.  Small or big- be that change.

Thursday, November 25, 2010

Giving Thanks

In honor of Thanksgiving- which I hope that you are all enjoying today with your families- I need to get my own list of things that I am thankful for out here. 

1-  My husband and son.  We all know I am nuts about both of them, but I am also incredibly grateful for both of them.  They are good men and I love them dearly. 

2- My family.  I have both of my parents, two sisters by blood and one by heart, their spouses,and assorted neices and nephews (9 now!) that are all wonderful.  I am so blessed that we all get along as well as we do and that we genuinely like one another.

3-  My inlaws.  Marrying my honey over 24 years ago gave me the gift of his parents and his siblings as well. 

4- My dear friends- who are also family.  Our circle of friends are the family of my heart and I am grateful every day- whether I get to talk to them or not- for having them in my life. 

5- My RA "Family".  Those of you that are with me in this battle day in/day out and share your stories- you give me hope, you give me strength and you strengthen my faith.  I am so very grateful for each and every one of you.

I was listening to Dr. Maya Angelou on Oprah Radio (for which I am also grateful) this morning and she said that she gives thanks constantly- for everything great and small.  Everything from waking up every morning to finding a good parking space.  It keeps her in a gratitude mind.  I think I am going to try that for a while.  I think it will help me as well. 

Happy Thanksgiving my friends!

Wednesday, November 17, 2010

What Causes Rheumatoid Arthritis Un-Awareness?

**Disclaimer**  This is an opinion piece.  The opinions expressed are soley mine culled from my experience living with Rheumatoid Arthritis and Fibromyalgia. 

When asked why it is that we need to campaign for awareness, the answer is twofold.  The easy answer is that the research into causes, disease progression, treatments and (dare I say it?) cures is woefully underfunded.  Without awareness we will not get the funding that is so desperately needed. 

On the more personal front, from the front lines the lack of awareness does more damage to the patient than just the funding issues.  It damages us emotionally, it adds stress to our lives and diminishes the pain that we live with on a daily basis.  So what are the roadblocks that we run into in our road to awareness? 

  • What's in a name?  Rheumatoid Arthritis.  Let's be honest here.  The Rheumatoid gets lost and all anyone sees or hears is "Arthritis".  I did it when I was diagnosed.  My first thought when it came out of my Nurse Practitioner's mouth was "I am not old enough to have ARTHRITIS!" There's nothing catchy, nothing "sexy" about being associated with a very well known condition that our grandparents get.  The suggested alternatives are too...umbrella to me.  Rheumatic Disease?  Autoimmune Disease?  There are hundreds of both.  We need something that is unique to our situation.  I feel that that universal knee jerk reaction to is why our "celebrity" RA patients aren't vocal about their disease.  Who wants to be associated with something that is for "old people"?  These people are in a career that values youth.  Look at Kathleen Turner.  She allowed the tabloids to broadcast that she had substance abuse problems rather than coming out and saying that she was fighting RA.  While I shake my head at that thinking, I can also see why, when known as a sex symbol, she would not want to be associated with the word "Arthritis". 
  • The invisibility factor.  Until such time as we have had significant damage, you can't SEE Rheumatoid Arthritis.  I have been diagnosed for 5 years now.  Visibly, the only physical damage you can see is that my pinkies no longer straighten and two of my toes on each foot are turning out.  Who looks at that?  I see it because it is me and my own vanity but no one who meets me would notice unless I pointed it out.  I walk differently- I have a bit of a wobble these days and my balance is not fabulous, but again- just meeting me you would not know that it hasn't always been that way.  To my own detriment I only use my cane, or my braces when I have to do so.  Again with the vanity thing but also because I tend to power through anything tough in my life.  It's my own way to deal but even if I do use my mobility aids, people assume that I have been injured and I don't always have the time to give an adequate explaination. 
  • The judgement issue.  Judgement comes in many, many forms.  My husband and I have handicap plates on our vehicles because of my RA.  Grocery shopping- which I love- can be very tiring and often makes my hips feel like hot pokers are being stabbed into them.  When I am shopping, I use the cart to maintain my balance and to lean on as needed but no one can see the pain that I am in, because of this I have been on the receiving end of a multitude of filthy looks and snide remarks for having the nerve to use my plate for handicap parking.  At first it bothered me, but these days I just let it go.  I am not the only one who has dealt with this.  A lot of RA'ers report the same issue.  When it comes to work, there are days when I am ready to take on the world and days when just getting out of bed is a struggle.  When I have one of those days I try to be honest with my colleagues and let them know so that they can understand why I am doing tasks that involve sitting more than standing and so far it has worked for me. I am also fortunate (?) enough that my boss also has RA and therefore she completely understands.  A lot of RA'ers do not tell their employers about their condition because they do not want to be seen as "disabled" and that can lead to charges of malingering and brings on a whole host of issues as colleagues assume that you are being "lazy".   Taking days off when you are in the middle of a flare only adds to this because we "don't look sick". 
  • Health care ignorance.  I have been fortunate enough to find terrific doctors in my journey so I have not run into this personally but many folks with chronic pain report that they have been accused of seeking drugs or having their pain be all in their heads by health care providers.  How completely demoralizing must it be to have the people who are supposed to partner with you to care for you treat you in such a manner?  If your doctor (nurse, specialist etc) doesn't believe in you, why in the world would you publisize your disease?  I wonder if these doctors realize how far they are setting our awareness back through their unkind treatment of their patients?  I wonder if they care? 
These are the major points that I feel are roadblocks in raising awareness for Rheumatoid Arthritis.  My friend Kelly, the RAWarrior, has done a wonderful job of giving you well thought out research on our awareness issues- I hope that you will stop by her blog (linked in my title) and read the other side of this issue.