Friday, April 1, 2016

Trust

After the news yesterday, there was a huge weight on my heart.  I was so touched by the outpouring of love I felt from loved ones near and far.  That love is what kept me afloat.  I felt like I was holding on by my fingertips to hope, and as I read people's comments on my blog or facebook or texts on my phone it was like angels were lifting me up.  So thank you.  It is amazing what just an "I love you" can do.
I was still worried and have been in a never-ending conversation with my God I feel like since yesterday.  My hubby finally told me I should call the doctor back and voice all my worries and ask more questions.  I'm glad I listened, because she was able to soothe my mind.  As I spoke with my neurologist, I was able to see that she was trying to balance my risk of getting PML (the deadly brain infection) with my risk of having an MS relapse.  She also assured me that if she thought I would get PML, she would take me off of the Tecfidera altogether. So I am at a much greater risk of having an MS relapse than getting PML, and in this case that is saying a lot, haha!
It is difficult to put my health in the hands of someone I hardly know, much less feel I can completely trust with my life.  But I can trust my Heavenly Father, and I feel like He put this doctor in my life right now to ease my mind and help me through this possible transition. 

Thursday, March 31, 2016

Fear

The past two days have been an emotional roller coaster!  Yesterday I had an appointment with a new neurologist at the office I have been going to where I did not like my neuro.  I was delighted to find that this neuro actually specialized in MS! (Why they didn't assign me to her in the first place is beyond me.)  She also has very good people skills (a rare find in neurologists) and is good at explaining things, and has children just like I do.  She seems like the perfect fit!  I am ecstatic.
THEN.  Today I get a call from her with the results of the blood work they did at yesterday's appointment.  My lymphocyte count is WAY below where it should be, which puts me at risk of developing PML (a deadly brain infection) while taking Tecfidera (the drug I'm on right now).  Woah.  Fear sets in.  She wants me to go down from two doses of Tecfidera a day to one for the next month and see whether my lymphocyte count goes back up.  This will put me at a higher risk for an MS relapse, but lower my risk for PML.
I am terrified.  What if I have PML already?  The symptoms are clumsiness (I am already that), progressive weakness, personality changes.  Those are such hard things to measure...  I will get an MRI in a couple of weeks that will see if I already have it, until then I just have to wait and pray.  I hug my babies.  I can't imagine what would happen to them if I were to leave them already.  But I can't let myself go down that thought path or I will drown in fear.  So I force a smile and I'm going to go wash the dishes now.