Thursday, January 22, 2015

Prayers needed for support

I know it has been a few months since I last wrote anything in this blog.  Winter has been rough.  I know the few people who actually read my blog understand why I have been silent.  I thank you for your support and prayers!

A few weeks ago Leo gave me some heart breaking news.  A woman he had put me into contact with about 5 years ago had passed away from an apparent drug overdose.  At first it was believed to be unintentional but then it was discovered that she had committed suicide.  She had RSD/CRPS.  Besides living with this intractable pain she also had to cope with a failing marriage and the lack of support from her teenaged children.  I know I did my best to talk to her, give her what information I could and simply be an ear for her to when she needed it.  We did not talk often.  From her I learned that too many people just do not have the access to information that could make a difference in their treatment plans.  Not all doctors take the time to sit and just TALK to their patients about what to expect from this diagnosis.  I have said it repeatedly that a support system is critical to our health.  I tried to point her into the directions of different support groups as she vented about how she did not receive any type of support or understanding from her husband.  She constantly compared her husband to mine telling me how lucky I am to have Leo's support.  Yes, I am eternally grateful for my husband, my love, my friend, my soulmate, my partner.  I admitted to her that even Leo had to learn and figure out the severity of this disorder and that he married me knowing about it.  I can only imagine how much different it could be if this pain came on in the middle of our marriage and changed all the rules, changed me as a person!

There is no avoiding it.  RSD/CRPS changes a person.  Many of us feel like it is a type of death, moving from one life to another.  You really do lose a piece of yourself.  Imagine how you would describe yourself.  Active?  Athletic?  Type A personality always on the go and cannot sit still for longer than a two hour movie?  Now give yourself a pain, a disorder that takes all of that away from you.  It is not that you have lost two years of your life.  You are forever changed and need to battle for the limited functionality you are left with!  For me, it is a little different.  I was just 17 years old,  not even an adult.  I was never an athletic type of person but I was always on the move.  My group of friends would spend the weekends roller skating and at the mall.  As they grew older the roller rink moved over for dancing at the clubs.  With my pain I had to give up the roller rink and the pounding music at the clubs caused pain even if I was simply sitting around, hanging out with my friends.  Forget about walking around the mall!  I lost myself in those first years.  My time was spent traveling to the city for treatments, recovery and then waiting for the pain to return.  My life shifted.  I had nothing in common with my friends I had known since elementary school and most of them shied away from the basic comfort of hanging out on the sofa watching tv with me because it scared them to see me that way.  I know I have written about this before but I can only imagine how much more difficult it could be on a marriage when the whole of a person, what you share in common and what you loved about the person, suddenly changes.  Add in the financial aspect of being sick, medical bills and a decreased income.  Division of household labor, lets face it if you are in too much pain to go to work chances are you struggle to keep up with basic household chores. Too many marriages break apart for much less!  I know the first few surgeries Leo has seen me through put him on trial to see just how strong HE could be to support me during a debilitating experience.  He definitely stumbled a few times before he found his balance!  Now?  I think we have gone through this enough times that we have our own rhythm.  Our life is far from ideal.  Our house is barely ever perfect.  We have our bad days when the whole of it becomes overwhelming.  Ultimately we know we are in this battle together and I never take him for granted!  I know we are lucky!  I am lucky!

Being on facebook I have reached out to many people with RSD/CRPS and various groups regarding this disorder.  I have been a member of various support groups and I have been fortunate enough to find one that feels like family.  What is incredibly heartbreaking is that I have heard too many stories of people losing their fight with RSD/CRPS.  Either accidental or intentional drug overdoses to escape their pain.  I do not judge them!  What I do believe is that if these people had a better support system then they probably would not be put into the situation.  There is strength in knowing that you can lean on someone's shoulder, have their ear, help with basic needs such as meals or errands, and most importantly someone's time to make you feel like a human being.  Sitting at the kitchen table chatting, a short drive to get a bite to eat or maybe to watch a movie.  Sedentary activities that allow for a meaningful interaction that help fill a void.  Personally my sister and my best friend both live far away for any type of regular quality time.  So, when we can we text and email (my bestie) or we chat for hours on the phone or facetime (my sister).  I have my family, my husband and children, my parents and sister, Leo's family which is my own, I have a few friends and I have some extended family members who rally around me with love and support.  Just a few months ago I received a package from an Aunt with a card and a scarf the color of orange that she felt she just had to buy for me because Orange is the color of our Awareness.  It sounds so simple but it has so much meaning and yet it is so difficult for many other friends or family.  When we have time to plan and prepare we do like to spend a day out and about, just at a slower pace and doing activities that accommodate my abilities.  I find all of these small efforts as valuable treasures that I hold close to my heart.

Recently, a new friend who is just a few decades older than me (like 4-5 decades but she seems like she is only 2-3decades older) has begun picking me up for choir practice and home again.  That interaction is something I look forward to each week.  The car ride with her, singing in the choir, choir practices, I have made some new friends doing something I enjoy.  But if it wasn't for my friend helping me get to and from practice I couldn't have been able to join the choir.  I never feel like I am inconveniencing her even though she has to drive out of her way to pick me up and take me home!  Anyone who is able to step up in even the smallest format to give me a hand is a friend that I value.

I ask that you all take a moment to pray for my friend Loretta Tirone who lost her battle with RSD/CRPS.  Please say a prayer for all those who suffer with RSD/CRPS that they should find a support system so they will not have to feel like they are alone in their battle.  Pray for those who are the support system so they can keep their own strength to help their loved one continue this life long battle.  More than just prayers I ask that you find at least one person in your life and give them some comfort, unconditional love, your valuable time and effort so that their own spirit can be renewed, that they know they are not alone in their battle.  You could make the difference in someone's life.

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!!!