Heading Out the Door

http://blog.rememberedvoices.com/blog/post/Heading-Out-the-Door.aspx

Everyone who follows this blog, I ask for your prayers.  There are so many out there who deal with so much more than I do on a daily basis, and this makes it hard for me to ask for help.

That being said, my life is not 'normal'.   My worries are certainly about my husband possibly being deployed or furlowed from the military, my kids getting sick, my pets getting older and my house and finances being in order.  My biggest worry, and the one that I try to fake being okay with is my health.  I am healthy.  Other than this disease that hangs over me every second of every day.  I would not have to think about my kidneys or my blood pressure, or my liver enzymes if I didn't have to go to the hospital once a week for drugs and take drugs every 5 hours (not including supplements) while I am awake. 

I wouldn't have to make sure that there is always mestinon in a bottle that my kids can open and place under my tongue if I can't breathe.  And I wouldn't always have to be sure that there is red wine on hand to help me in a crisis.  Yes.  That is my reality.  Red wine, mestinon, the hospital and a normal life.  What the heck does that mean? 

Tonight it means that my kids know that I love them and that I put them to bed. It means that I am going back for more drugs tomorrow that might make me feel a bit crazy, but will hopefully make me not have to think about revisiting chemo for a fourth time. 

I will always keep fighting.  16+ years.  Good days and bad days.   I will win this fight.  You just watch me. 

The Sun Will Come Out

Hi everyone!  Thank you all for continuing to think of and pray for me and my family.  I know that many of you have been wondering why I haven't written here more often, and I wanted to let you know how much I appreciate the encouragment (both in my health and my writing!).

I have been writing just about everyday on my new blog at http://blog.rememberedvoices.com/  I would love to invite you and anyone you think might be interested to join me at the new address. 

I do plan on continuing to write here, but I haven't had the time or energy to dedicate to truly do the subject of living with MG justice.  In the next few days I am going to sit down to review the roller coaster of treatments, good days, bad days and great days.  My local neurologist is consulting with the guru down in Boston to decide how we should proceed as I have been getting more and more and higher and higher doses of steroids that aren't holding the symptoms at bay for more than a day or two. 

It is always an emotional challenge to review the days spent in treatment, but it will be well worth it if we can update my treatment plan and hopefully reduce some of the meds.  I'll keep you posted- and as always, thank you for your thoughts and prayers, and please feel free to share my blogs with anyone you think might be interested or who might benefit from my story!!!