Saturday, November 1, 2014

Gabriel and my RSD

A large part of my constant Mommy Guilt stems from how my RSD affects my childrens lives.  I brought them into this world with the full knowledge of my health condition.  Every time I have a flare up or surgery I am overwhelmed with guilt knowing all the "things" I cannot do for them.  Yes, this is their normal so they never knew any other type of Mommy.  Still, the knowledge of how my RSD stops me from doing a lot of Mommy stuff with them haunts me.

A few years ago we sat Gabriel down to give him a better understanding of my RSD.  It was a conversation harder than you can ever imagine, harder than "the sex talk".  Before the conversation he only knew my pain by "Boo Boo Leg".  Gabriel has always had me high up on a pedestal but he was getting old enough to understand that his Mommy wasn't the typical Mommy.  Gabriel is also blessed with a strong and overactive imagination.  We needed to have the talk because his imagination was taking him places about my boo boo leg that needed to be set straight.

I don't remember exactly how I started the conversation.  Leo was with me and I could see the tears in his eyes even though he would not let them spill over.  I know I first listened to Gabriels fears.  Leo talked to him a little while I gathered my own strength, it was like one of my worst fears coming to life.  My little boy admitted he was scared that he would lose me.  Somewhere during the conversation in my heart I know God gave me the inspiration to find the right words to help Gabriel learn about my pain and be okay with it.

RSD stands for a Really Stupid Disease.  Gabriel had such a strong hatred over my pain.  Not at me, he hated the actual disease.  So I gave him the chance to vocalize his anger by allowing him to say the word Stupid.  It also became a funny thing because it is the only way he is allowed to use that word!  Stupid is a mean word that I do not allow my children to say because it could be hurtful.  Stupid is a perfect word to be associated with my pain.

Last year I told Gabriel about November being National RSD/CRPS Awareness Month.  Well, last night as we all sat on the couch exhausted from Halloween I started a conversation about the fact that tomorrow is November first.  Gabriel interrupted me to say "That means it is RSD Awareness Month."  I asked him how he knew that.  Leo said "He must of overheard you talking about it."  Gabriel said "No, I just remember you telling me last year."  God, how can I not feel blessed with having this sweet Angel in my life?!  Later after Leo went to bed Gabriel and I stayed up to finish watching a movie together.  We chatted for a bit after the movie and decided to cuddle a little longer on the couch watching more tv.  At 12:01, when I said it is time for bed, Gabriel announced "It is officially RSD Awareness Month."  Of course I squeezed him with a dozen kisses or so.  But when we woke up this morning and I was still in bed, trying desperately to get some more sleep, I called him over to me to get a kiss.  What I got instead was a "Happy RSD Awareness Month Mommy!"  and then I got my morning kiss!

It is a big deal that we have a whole month designated to raise awareness.  I remember the first time I read about it I cried.  You see, I have adapted a process where I research RSD/CRPS every few months.  Being diagnosed before having information readily available means that I have always been on the lookout for anything I could read about it.  I always have a little pride whenever I see something new posted.  I always cry tears of triumph when RSD makes it into the news or better yet on a talk show!  It is my belief that this disease should be as well known as Diabetes, MLS, ALS, and Cancer.  The fact that it is rated as the most painful condition known to man on the McGill Pain Scale, more painful than childbirth and cancer, should give people reason enough to learn about it.  The fact that it could happen to anyone at any time yet it is only diagnosed after every other possible condition has been overruled is yet another reason we need more research.  Added to all of that is the fact that our men and women in the military are coming home from war struggling with this disease when they could have been helped if we had the foresight to strengthen our research and awareness a dozen years ago!  Yes I care about awareness because it is a disease I have lived with since I was 17 years old but I also believe no one should have to go through this pain.  Yet, often enough we are told that it is all in our head, imagined or faked, before we find a doctor who is knowledgeable enough to diagnosis the pain and then often times it is too late for the treatments to give us complete remission of the pain.  Those first three months of pain is the critical time period where treatment could possible give remission.  RSD/CRPS needs to become a household name if we are ever going to help future people find remission.  It needs to be a household name so that the people who are living with the pain can feel less alone in their fight.  RSD/CRPS Awareness Month gives us that hope!  Gabriel dreams of a future where his Mommy doesn't have to be in pain ever again.  Can you help him realize that dream?

Happy RSD/CRPS Awareness Month to all my fellow RSD'ers!!!

Thursday, October 30, 2014

Go ORANGE in November

November is RSD/CRPS Awareness Month.

  During November most people start thinking about what they are Thankful for and how they can show their Thanks because of Thanksgiving.  I think it is great that we share our Awareness Month with a time of Thanksgiving.  RSD/CRPS can take so much away from us but I am overwhelmed with thankfulness that we are slowly growing recognition regarding our painful disorder.  I have said it before ... I remember back in the beginning when RSD was barely a 3 sentence paragraph in my doctors medical school training.  The only source of information yielded from an internet search was RSDHope founded by the Orsini Family in support of their son Keith who was fighting a battle with RSD and for everyone else diagnosed with this painful disorder.  Now?  Today I Googled RSD/CRPS and received 536,000 results!  When I check on the News link these were the top three stories I was treated to!

October 24,2014 5K to raise funds for RSD  http://www.charlotteobserver.com/2014/10/25/5256922/5k-to-raise-funds-for-rsd.html#.VFJAOvl4p20
September 29, 2014 Teen organizes walk to bring attention to RSD
http://www.lockportjournal.com/news/local_news/article_7b3e5f50-26ca-59ec-ad8a-c0567bd8b27c.html
September 25, 2014 Community rallies around teen with chronic pain condition
http://www.wmcactionnews5.com/story/26628657/community-rallies-around-teen-with-chronic-pain-condition

We have even had segments on some great tv shows!
The Doctors TV http://www.thedoctorstv.com/articles/912-one-woman-s-battle-against-chronic-pain
Dr Oz http://www.doctoroz.com/episode/paula-abduls-shocking-health-confession
Dr Oz http://www.doctoroz.com/article/faq-reflex-sympathetic-dystrophy
http://www.insideedition.com/videos/2020-doctor-explains-mysterious-crps-condition

Even Pepsi has helped us raise awareness with a campaign (unfortunately only in Colorado at the moment).  http://www.rmrsd.org/

What can you do to help?  Go ORANGE!  Post a picture of yourself wearing something ORANGE with the hashtag #CRPSORANGEDAY on November 3 (or any day of November!)  If you want to do more please feel free to visit these sites.
http://www.rsds.org     http://www.rsdawareness.com/     http://www.rsdhope.org/     http://www.rsdfoundation.org/    

Want to buy something to show your support?!  http://www.zazzle.com/rsd+crps+gifts?q=rsd%2fcrps     http://www.cafepress.com/+rsd-crps+gifts     https://www.etsy.com/search?q=RSD%2FCRPS     http://teespring.com/#q=RSD%2FCRPS&p=1

However you decide to participate in RSD/CRPS Awareness month please take one minute to reach out to the person YOU know with RSD/CRPS to tell them "Happy Awareness Month!"  It is a simple way to make a difference in one persons life.