Thursday, November 11, 2010

Did you know??

Among the most frequently experienced autoimmune diseases for a lupus patient to have are Sjogren's Syndrome, multiple sclerosis, & Hashimoto's thyroiditis.  (I have Sjogren’s and Hashimoto’s...and have been repeatedly tested for MS.)

Lupus and multiple sclerosis (MS) are both autoimmune diseases where the body inappropriately attacks some part of the body.  In lupus, the immune system attacks various organs in the body – heart, lungs, kidneys, skin, blood vessels, brain and nerves.   In MS, the immune system attacks myelin, the fatty protective layer over nerves fibers in the brain and spinal cord causing neurological problems.

As with lupus, there is no definitive cause of MS and a combination of factors may play a part – they believe environmental and genetics play a role in both.  Another factor lupus and multiple sclerosis have in common is that there is no good test for either disease – despite what Lady GaGa claimed.  There is NO single test to say YES or NO to having lupus.  The same holds true for MS.  So…the diagnosis relies on a set of characteristic symptoms, signs and lab tests that can't be explained by another diagnosis – a diagnosis of exclusion.

Don’t get me wrong.  Lupus and MS are very different diseases…but they have a lot of commonalities.  In addition to being autoimmune diseases, both typically affect the same age and gender population -- younger women -- and both can follow a remitting-relapsing pattern. While the nerves are the primary target of MS, some lupus patients also have definitive neurological issues as well.

For some of us Lupus patients with a lot of crossover symptoms, we realized a long time ago that we don't fit into the same cookie cutter mold that a lot people do.  I know from months and months of testing for MS, that it is pretty much the same for MS patients as well.

I encountered a very angry 23 year old young woman, with a huge chip on her shoulder because she has the most aggressive form of MS.  I met her through a forum we both post on.  She was not open to any words of support nor was she even open to someone asking questions about what things her doctors were doing to help her disease and to cope with her disease.  This young woman reacted so hostilely to me that she openly called me an idiot in front of our peers on this forum.  She told me that I had no clue what she was going through and that her life was over in three year when she was going to become crippled and never walk again.  I tried to tell her not to give up hope because a great deal could happen in three years.  I even tried to share with her that I deal with lupus and all the stuff that goes with it. Her response was. "So what, like anyone cares you have something that isn't ruining your life or could cause you to die or anything."  Then she logged off without waiting for my reply. 

Here it is:

"That is where you are wrong.  You do not walk in my shoes to know what burdens I have or trials I go through.  You choose to see life as having cheated you out of something and you MISS ALL OF THE GLORIOUS WONDERS AROUND YOU.  You are the foolish one.  You exist in this world but you do not LIVE in this world.  You want everyone around you to PITY and FEEL SORRY for you.  Guess what?  I don't.  I feel sorry for those around you for what you put them through with your vile, hateful attitude.  

You chose to spew venom, when you could be a role a positive influence on this world for whatever TIME YOU HAVE. None of us know when our last breath will be, but we have a duty to ourselves and those who love us to make each day make each day a treasured moment.  You miss all the miracles around you by only seeing the worst case scenario.  I told the people important to me that I loved them.  I worked a full day at my job.  I saw the sunset.  LIFE DOESN'T GET ANY BETTER THAN THAT!  

It's a choice.  I choose to see the good and positive in life.  AND guess what?  I AM LIVING.  So who is the idiot in this?  Not me."