Saturday, April 25, 2015

Invisible Disease

Living with an invisible disease is hard as many of you know.  I have always talked about support systems and their importance in our lives.  See, the trick about an invisible disease is that the person begins to feel invisible as their disease takes over their life.  You cannot see their pain and you begin to loose sight of the person.  Soon everything about the person becomes erased, or at least it feels that way.  Especially when the person with the invisible disease stops being able to socialize with their friends as they once where.  Human nature tells us that our friends are people who share mutual interests.  Take those interests away and the relationships become strained.  When a relationship becomes strained we back off and away for many reasons but ultimately that relationship was only built on a common tie that has been broken.  Guilt may push the relationship forward even though it probably would have faded away in time despite the illness.

As someone living with an invisible disease I have learned how to cope with the heartbreak of friendships that cannot survive the illness.  I was young when this journey began.  I have also enjoyed many real relationships that have survived not just the test of time but my illness.  Family and Friends have learned to come to me majority of the time.  If they want to do something with me they understand it has to be within the boundaries of what I am capable of doing.  It is hard work being my friend!  I guess that is why I cherish the few outstanding people who are capable of making it work.

I hate being asked casually "How are you feeling?"  The proper response will always be "I'm okay."  If you know me well enough you can find the signs that I am not feeling well.  I will have make up on, my hair done and a big smile on my face.  I will laugh and tickle the kids giving everyone a big hug.  I have been told the difference is in my eyes and how my body moves.  Honestly, this is just ME.  I cannot go through life letting pain get in the way.  I cannot raise my children allowing them to see their Mommy struggle with pain.  They see the pain.  The pain is very real and they know it is there but they do not need to see Mommy in pain.  I will not give in to the pain.  Pain is a part of my life but that doesn't mean I have to let it be my life.  Contrary to this fact is the reality that the pain has created boundaries for me to live within.  At times I will push those boundaries but doing so poses consequences.  Leo and I have learned that when I push my boundaries I can be laid up with pain for days.  God Bless the Man because he helps me decide which boundaries I can push and then deals with the consequences with me.

Today I am sitting on my lazy boy recliner with my thick thermal socks, sweatpants, tshirt and a warm blanket on but my right foot is still cold.  I have my stimulator on and my leg hurts.  I am only slightly limping and I admit that my pain is better than it was yesterday.  Yet, here I am sitting in the living room resting my leg hoping it that tomorrow will be better so I can do "stuff" with my family.  I can use a cane to help me walk but I would prefer to not use it.  I can push the boundaries but do I want to?  If there is anything I want you to understand it is this.  It can be tough deciding when to push the boundaries because I know what the fall back will be so the question becomes 'Is this worth the ensuing pain?'

Leo and I both hate using my pain as an excuse.  This is not exactly appropriate dinner conversation when we go out with family and friends.  We realize that most of the people who are close to our inner circle still do not have a full understanding about my pain.  Is the disease in my back?  Is it in my leg?  What the heck is wrong with Marti Ann!  I find it funny that I have known some of these people for over a decade and consider them an extension of our family but they honestly do not know what RSD/CRPS is let alone the pain that I go through.  I know it's not their fault because I don't display my pain for the world to see.  However it does mean a lot to me when family and friends do educate themselves and show their support.  Several months ago a family member mailed me an orange scarf just because she thought of me when she saw it.  I cried when I opened that package.  It was the color of the scarf that made me cry, the color for RSD/CRPS Awareness.  Knowing that I have this relative miles away who sees the color orange and thinks of me because she knows that the color has a huge meaning.  I have never sat down with her and said "So this is what I have and this is how it affects me."  She has taken it upon herself to read my blogs and learn about my disease.  Because she loves me.  I know there are others who love me and maybe they read a few blogs but basically their lives are full, too busy to really take the time to do much more.  I love their efforts.  I value any and all efforts, big and small, because I know I don't make it easy.  As much as my pain has developed my life I still do not let it define my life.

Invisible.  It is always so hard when you are trying to fight for awareness but want to still be seen as a regular person.  Wanting to be seen as a regular person but wanting people understand that I am fighting a battle.  Fighting a battle but not wanting anyone to see the battle scars.  Leo and I have also learned that my disease is having a great impact on Gabriel's life so we have to become better at hiding the pain while teaching Gabe that I am and will be okay.  My invisible disease gives me great pain but it affects my whole family.  Leo has so much love and strength for me while he secretly fears the unknown.  We raise the boys as if it is normal to have a Mommy in pain but Gabriel has reached an age where he worries, fears and sees more than we think and imagines possibilities that aren't applicable.  As a family we might act like RSD/CRPS is a minor footnote of our lives but in the privacy of our home it often takes center stage.  Like today, with my leg elevated in my lazy boy recliner.

Christine Miserandino had the moment of inspiration when she developed "The Spoon Theory" as a way to explain her invisible disease to someone she thought already understood.  That theory has proven to be universal.  It takes a concept and makes it tangible and ordinary like a spoon.  It has helped me explain my own boundaries.  If everyone is given a certain amount of spoons in a day  (spoons equaling physical ability) the Spoon Theory shows how a person with an invisible disease goes through their spoons.  Little daily activities that most people take for granted cost someone who lives with daily chronic pain where someone who is healthy hasn't even registered the cost.  I have tried to make the spoon theory to work in isolation, it doesn't.  It has to be done in comparison to a healthy person's life.  I hate that!  I don't want to compare lives!  My pain might be considerable but it has also provided me a journey that has led to so many rewards.  I found my husband because of this journey!  Check out the spoon theory!

By blogging I have been trying to make my pain less invisible while walking the line that doesn't allow this pain to define my life.  Such an awkward balancing act!  In the case of my children I feel like it is best to keep the disease invisible until they are mature enough to comprehend the real diagnosis and understand that Mommy continues to fight a battle and she is still standing!  With my family and friends I want my disease more visible.  I want people to see me and the battle I fight because whether I like it or not this pain has been a part of my life for almost 20 years and counting.  I have faith that the more I blog about it the more people will begin to understand the life my family and I live.  I pray one day RSD/CRPS will be a largely known medical term so more people don't have to worry about needing to explain what they have and then the ensuing isolating feeling when people have a level of disbelief that someone could be in that much pain daily.

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.