When a Hug Isn’t What It’s Meant to Be

The other day I patted my friend, Laurie on the shoulder, and offered a compliment about the work she does as Executive Director of the Non-Profit where I work.   As soon as I did it, I remembered my action was likely causing her more distress, than the pleasure it was meant to provide. 

So many times I’ve wanted to give her a hug of comfort, especially when she is going through her most difficult times.  Those times I am more likely to remember when given to Laurie, who has about Reflex Sympathetic Dystrophy, RSD, a hug isn’t what it’s meant to be.  In an attempt to offer comfort, welcome or joy of some kind, instead, a hug can cause excruciating pain to someone with RSD.

Though I’ve written about Laurie before, I’ve taken the time to research more about her disorder.  I can’t say I will offer more medical information, as I thought I might when I started this blog.  To be honest, everything is so technical, that I find myself at a loss how to explain what I have read.

Perhaps the best thing I can do is continue to tell more personal stories.  They are easy to find.  One only has to go to the RSD organization's site and there is a world of valuable information.  If you suspect you have, or have been diagnosed with RSD, I strongly suggest you go to this site, if you haven’t already.

Once on the site, there are several options that will lead you to some excellent posts on You Tube.  No words I write can tell the story better than these short video clips.  If they do not tug on your emotions, you are a stronger person than me.  Then again, maybe you just don’t know someone who has RSD.

I know Laurie, and to me she is the face of RSD, though I know there are many other faces.  I’d like to hear more about their stories.  Until I do, I will tell you more about this remarkable woman’s battle.

For Laurie each day is a struggle for concentration.  Imagine trying to focus on anything other than your pain.  Add to it, medications you might be taking to dim your pain, also dimming your ability to keep your mind on your work.  Top it off with exhaustion from lack of sleep.  It is said that the average RSD sufferer gets only 2 hours of sleep a night.

If I didn’t see it for myself, I would not believe Laurie’s ability to maintain her ability to do her job. Not only that, she is outstanding in her work.  Those of us who work under her, often wonder how she does it all.

Laurie also serves as a mentor to me.  I have recently been put on medication that impacts negatively on my concentration, and Laurie has coached me on staying focused.  I’m still a novice while she is a pro.  Yet, it is a sad title to carry when you consider all she has to do to remain so keen.

I will continue to learn more about the people who have, or who have been suspected to have RSD, and bring you their stories.  Until then, I will continue to do research and to observe my friend.  By writing about it, I hope I can help someone who suspects they have RSD, or people who know someone with the disorder better understand.

The Fear of RSD

The other day I started thinking about the pain my step-daughter, MM, has been suffering.  She’s been told she has Fibromyalgia, an often debilitating pain disorder.  While researching more about Reflex Sympathetic Dystrophy, RSD, for this blog, I saw that often people with Fibromyalgia also have RSD.  That’s like a double whammy for someone already in pain.

Watching my friend Laurie, I could cry to think MM might also have RSD.  Okay, I’m not a doctor, and I should not worry when there is nothing that actually proves she has RSD.  So, I will not jump to conclusions.   What I will do is ask MM to talk to her doctor about RSD just to play it safe.

“Play it safe.”  What misleading words.  The only good thing I have found out about learning you have RSD is that if you learn you have it early the treatments are sometimes more successful.  There still is no cure.  It seems more like a cancer that goes into remission.

My research has also revealed that there are only a few ways to know if a person has RSD.  It’s more a combination of symptoms that might mean a person has it.  Ironically, the symptoms are very broad.  As listed in an article by Dr. William F. Shiel, Jr., Medical Author the following symptoms may vary.  You can read the complete article here..

1.     Acute (three to six months): burning, flushing, blanching, sweating, swelling, pain, and tenderness. This stage can show early X-ray changes of patchy bone thinning.

2.     Dystrophic (three to six months): early skin changes of shiny, thickened skin and contracture with persistent pain, but diminished swelling and flushing.

3.     Atrophic (may be long-standing): loss of motion and function of the involved hand or foot with contracture (flexed scarring process), and thinning of the fatty layers under the skin. X-ray can show significant osteoporosis.

An MRI can also tell it the person is showing signs of osteoporosis, thinning bones, another symptom of the disorder. 

RSD is not classed as a disease.  Although I’m calling it a disorder; many people refer to it as the “beast”.  You will see this often if reading forums on the subject.  I believe if anyone has been diagnosed with, or suspects they may have RSD, these sites may be helpful.  There is a benefit to knowing you are not alone.  As well as understanding, there are suggestions of what has worked for others and information on new treatments.  One such forum is found here.

In my final paragraph today I want to reiterate the previous paragraph.  No matter how understanding a family may be when learning their loved one has RSD, like so many other invisible diseases, there may be times even family and the best of friends may not fully understand the pain the sufferer is going through.  After all, in the beginning they look fine.   That is a common complaint among people with RSD.  People think they are lazy or just trying to get attention.  That is not the case.  I will touch on this next time.

Have a Blessed New Year

Oh my goodness!  Another year is less than two hours away.  Part of me just wants to wish my readers another great year.  But I can't do that without acknowledging those many friends of mine who haven't have such a great year in 2012.  Like my friend, Laurie, who inspired this blog.  She has RSD.

I have another friend who is in need of a bone marrow transplant.  Maybe it is a coincidence that tonight my son suggested my husband and I hurry out to look at Christmas lights.  Actually, they were specific lights.  Not far from our home is a fabulous display of lights that blink to music.

Tonight was the last night to see them.  They were there from Thanksgiving until tonight.  Imagine something so delightful, close to home, and I hadn't even known they were there.

However, one of the most special things about these lights is that they are there to draw attention to the need for not only bone marrow donors, but donors for organs and tissue.  It is also meant as a tribute to those people who have passed and left a legacy to other people they don't even know, so that those people can live a healthier life.  Yes, a tribute to donors and their families.

The short of this is that the mother in this family needed a lung transplant and was one of the lucky ones who got on.  You can read their story here.  They are also raising money to help others going through the same thing as they did.  Please note the statistics in the article.  I hope it helps all of you understand just how important it is to be a organ or tissue donor.

Now, back to Laurie.  You see, with RSD there is no transplant that will help stop her life of pain.  In fact, surgery of any kind will likely only make it worse.  It was surgery that started her condition.  In one of my next blogs I will explain more on what is known about how RSD starts. 

I want my blog tonight to be simple.  I want it to be filled with hope for a brighter new year.  I looked at the beautiful display of lights tonight and realized the tribute is there because sometimes there is hope.  Sometimes miracles do happen.  A mother got a lung and is alive to watch children grow and have families of their own.  It is possible more will be discovered to help people with other conditions, too, like RSD. 

There is hope for my friend, Laurie, and my friend in need of a bone marrow transplant.  That is my prayer.  And a prayer that 2013 will be a year filled with wonderful miracles.

For Laurie

I have been thinking of writing this blog for some time.  Almost since I learned my dear friend Laurie has RSD, Reflexive Sympathetic Dystrophy, a condition that in its own way is as devastating as Alzheimer's Disease.  As I have watched Laurie deal with RSD, my admiration of her has grown.

What is this condition?  Well, that is what I hope to tell as I write this blog.  I will be studying the condition and the people who have it.  I will offer interviews from people with RSD and family members who so often misunderstand the problems associated with it.  And other family members who are looking for ways to help their loved ones who have RSD.

As for today's first post, I simply want to talk about Laurie, who has recently learned that RSD has spread through her entire body.  My friend lives in daily pain from the disorder.  It is her constant companion.  She has trouble sleeping from the pain, and awakens again to pain.  A small bump or bruise may be completely ignored by us, but for Laurie it causes excruciating, lasting pain.

Laurie's calling is to help others who are less fortunate.  While she not only struggles with pain, she works hard to hide the pain.  She does not want the focus to be on her, rather the people she is trying to help.  People who are suffering in ways of their own.

Her prognosis is not a positive one as there is no cure for this condition.  There are pain management and procedures, many not covered insurance.  She seems to be between a rock and a hard place, yet she continues to strive for as normal a life as possible.

Today I dedicate my first blog on RSD to Laurie.  The first of the faces of RSD I will profile in this format.  Click here to learn more about RSD.