How Do You Do It?

I have been having a hard time... mostly because of the craziness of oral prednisone.  I just need to hang in there until the New Deal starts!!!  I wrote a bit about what is going on at my other blog.  Please check it out, and as always, feel free to share with anyone you think might benefit from my story or is willing to say a prayer and send positive energy my way!

How Do You Do It?

The New Deal

When Katherine was 3 she wouldn't answer to anything but Annie.  She loved the movie, the Broadway show, and anything having to do with Annie. Jason dressed up as Daddy Warbucks and we decked the house out to resemble a mansion to celebrate her birthday.  It was quite the extravaganza.  Little Annie, along with the depression suffering Americans were all asking Herbert Hoover for a 'New Deal" for Christmas. 

I want a new deal.  I want a new plan, a new lease on life, a new chance at living without thinking about slurring, chewing, swallowing, walking, drying my hair, shaving my legs and breathing.  Note that shaving my legs came before breathing.  I am the queen of downplaying what is happening with the MG.  Today my good friend called and asked how I was.  I very slurringly and breathlessly said, "oh, I'm okay, how are you doing?"  She laughed.  We all laugh at me and my crazy, oh I'm fine. 

I know that I am not fine.  I know that without all the steroids, extra rest and copius amounts of wine that I would be hanging out in the ICU with a tube down my throat.  So the new plan?  The guru in Boston was all up in arms that we have been dealing with the symptoms as they come rather than trying to treat them before they hit.  Kind of hard to treat symptoms before they hit when all the treatments only last for a few hours.  And he acknowledged that he hasn't ever seen a myasthenic like me- one who responds to treatment within minutes only to have the drugs last for a few short hours. 

Looking over my history (you would be amazed by my flow charts) I was the best I have been in the past 6 years last years after big doses of Rituxan (chemotherapy).  After the Rituxan, I was able to last a full month between IV steroid infusions (solumedrol).  Just to give a bit of perspective, I am now lasting about 15 hours between infusions.  So the New Deal for me... every six months I will be getting 2 big doses of Rituxan which will hopefully reduce me to once a month solumedrol.  In the mean-time, I am being treated with lots and lots of steroids, which leads to crazy fun (NOT) times here at home. 

I have resigned myself to the side effects of the steroids until we get the chemo going.  This is going to work... this is going to be the long term drug induced remission that I have been praying for.  Regardless, my husband, kids and I are in for a wild ride.  You gotta love a crazy Mommy. 

Storms

I saw the guru down in Boston on Monday.  I will update everyone very soon on the new plan. 
Tonight's post on The Voice Library is one of my favorites ever.  It makes me think of so many happy times. 

Again, thank you all for your continued prayers and positive energy and thoughts!!!

All the best!  Claire

Getting My Groove Back

Hi everyone!  I updated the other blog and it pretty much fills you all in on what is going on with my crazy MG roller coaster ride. 

There is a smile on my face, and I continue to ask for your prayers and good thoughts!  Thank you all for following my journey and for thinking of me and my family!!!!
Please see the link below. 

http://blog.rememberedvoices.com/blog/post/Claire-Gets-Her-Groove-Back.aspx

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!!!   

For Your Prayers

I don't know how many people follow this blog.  I haven't ever checked into it.  I never even really thought about it.  I do know that I have been sent random emails from people far and wide checking on how I am doing, and asking why I haven't updated what is going on.  Let me start by saying that I am grateful for all the support, and follow that with I am sorry that I don't update more often. 

The thing about Myasthenia (and it kind of makes me mad that I capitalized that) is that our lives aren't our own.  We are subject to huge swings of fate.  All it takes is chopping onions and a slip of the knife, a little cut on my finger, to make all the nasty evil antibodies come out and attack not only the possible infection festering in my bloodstream, but also my ability to speak, walk and breathe.  What does one do with that? 

How am I doing?  I am struggling with this answer.  Some days I am fantastic.  Most days you would never know what is going on with me.  Is that because I worry about upsetting those that I care about, so I put on the best face I possibly can?  Do I really hide the symptoms that well?  No. Well, maybe. 

I am so much better than I was before chemo.  I am so grateful for all that medical science has done for me, and in turn, for my family.  One round of chemo was supposed to put me into remission (we hoped and prayed).  The second round of chemo was surely going to put me into remission (we hoped, prayed and swore that it would).  The third round of chemo should absolutely have obliterated the MG. 

Am I better off than I was?  Absolutely.  Would I do it all over again?  Beyond question.  Am I still asking for prayers, despite being able to function far beyond where I was 4 years ago?  Yes, please. 

Thank you all for your thoughts, your prayers, and for caring about our family.