FIRST INFUSION OF TYSABRI

I have had Crohns Disease for over ten years now.  It has been one of those curve balls that life throws at you, that changes your entire life.  It changed my life completely.  I hate having the disease.  However, some of those changes have made me stronger, or at least that's what I like to think.  Before the diagnosis, I was pretty wild.  I wrongly believed nothing bad could happen to me.  I never worried over the consequences of my actions.  I erroneously thought I would have years and years before I was stricken with an incurable disease. I was young and so naive in my way of thinking.  All I wanted was to have a good time.  Crohns Disease messed up my entire way of thinking.

Before I continue with today's blog, please allow me to explain the disease.  Crohns Disease is a chronic autoimmune disease that can effect any part of the digestive system, from the mouth to the bottom.  My immune system sees my digestive system as a foreign object and then attacks it.  The main symptoms are chronic diarrhea, severe stomach cramps, horrid pain in the stomach and joints.  It is very debilitating and frustrating.  It is NOT contagious.  Hereditary, yes.  Contagious, NO!  I have to plan when to go out anywhere and need to know where the nearest bathroom when I go out in public.  It makes me feel as if I am chained to the toilet and it rules my life.  It is very hard to diagnose.  It took doctors six months to finally diagnose.  In that case, I was pretty lucky.  I know some Crohnnies, who suffered years in agony before they got their diagnosis. 

I have been treated with all kinds of medicines.  Asacol, methotrexate, 6-MP, Remicade, Imuran, Prednisone (don't even get me started on that one), Cipro, Flagyl, Humira, Cimzia, and now Tysabri.  Some would work awhile and then stop working or I would have a reaction to it.  This year has been the absolutely worst year of my life.  The stress of everything that happened at the beginning of the year, kept me in a consant flare up this year.  I think I managed maybe one month of being in remission, this year.  My last flare up prompted a change to my medicine.  I had been giving myself injections of Cimzia for a little over a year and when the last flare came upon me, I had to make a decision.  To have surgery, a irreversible colostomy (the entire colon is removed and a bag is attached to the belly to catch solid waste) or Tysabri.  Since I am not ready for surgery, I began to pray and research the Tysabri on the internet. 

The Tysabri has alot of serious side effects.  Such as brain infections and tumors.  I am more than confident and hopeful these things will not happen to me.  I made the decision, despite the risks, to go ahead and take the Tysabri.  It took awhile to get everything ready for today.  Paperwork galore and waiting was torture. 

Honestly, I was more than a little nervous about taking it.  But I wouldn't let my fears stop me.  I want a normal life that doesn't depend on where the nearest toilet is located.  So, today, I pulled up my big girl pants, forced all the "what if" thoughts right out of my head, and received my first infusion of Tysabri.  Other than the nurses having a difficult time hitting a good vein, (my veins are scarred from years of blood draws and IV's, they are small, and like to roll away when they see a needle coming near them), everything went extremely well.  I was pleased with how well everything went, with the exception of my difficult veins.  It took longer for the nurses' to find a vein than it did for the medicine to run in.  I might have to get a central line/port for it, since I will be receiving the medicine every four weeks.  I am planning on discussing this at my next appointment with my GI doc.

There is one other thing that complicates my life and medical treatment.  Another autoimmune disease that causes havoc.  Lupus.  In this autoimmune disease, my immune system sees my skin and joints as a foreign object and attacks it.  I get rashes in the shape of a butterfly on my face, back, and legs.  A couple of years ago, the rash on my face had gotten so bad, my eyes were even swollen and red.  One eye was at the point of barely being open.   The disfigurement of my face, showed me just how vain I really am.  If I thought I wasn't attractive before then, I knew I wasn't now. 

It is not uncommom for a person to have more than one autoimmune disease.  I think I got the short straw and got two.  Both diseases have one common treatment that works wonders.  Prednisone.  I cannot think of any words to describe how much I despise prednisone.  I gain weight and become grouchy (more than the usual).  But it works and helps me to achieve remission when both diseases flare up.  Most of the time now, both flare up at the same time.

I handle it the best way I can.  I have cried, prayed, spiraled into depression, and just plain hated myself for having both diseases.  What did I do to deserve either one of them?  Yeah, I even journeyed through self-pity.  I'm ashamed of that fact.  In my defense, it is only human to ask all of those questions and feel the emotions I have had to deal with.  I try my best to look at the silver lining in every cloud and it is a struggle for me to stay positive.  I know God has a plan for me.  Even though, I don't have any answers as to why, I have faith in the belief, He is not going to put more on me than I can handle. 

If anyone wants to know more about Crohns and Lupus, please feel free to ask me.  I will be more than happy to answer any questions.

And on that note, I am off to catch some ZZZZZZZ'sssss.