Feeling Most Excellent!

My good friend Suzie kept telling me over and over all through the four years of pre-school that once the kids were off to school every day that I would be much better.  Turns out she was right!  I am going with combination of 3 courses of chemo and now the kids being in school.  Regardless of what the reason, I am feeling most excellent (as Bill and Ted would say).  At the end of most days, I am slurring, but that is always very quickly resolved with a glass of wine or two :-) 

I haven't been in for steroids for four weeks as of today, and it was five weeks between treatments last time.  I am still taking the mestion every five hours and it is pretty clear if I ever miss a dose.  LOL  I get all slurry and stumble all over the place!  Crazy disease that makes me look drunk, and then I get to drink wine and I don't look drunk anymore. 

So I am feeling this well, and that is after throwing a crazy Halloween party with over 30 friends and neighbors and dealing with Katherine, who has strep (poor baby) and having a terrible cold myself.  In the past, all it took to throw me into crisis was a cut on my finger.  My body would say, "oh... possible infection!  Lets make tons and tons of antibodies to kill it!"  And off to the ER or infusion center I would go. 

Now I really do kind of feel like superwoman.  I am doing just about anything I want to do (but being careful to take care of myself- most of the time- LOL) and for the most part, I feel really good.  I did have a blip after going on a hike a few weeks ago- but who isn't tired after a hike?  My tired just came out as not being able to talk or walk, oh and a little trouble catching my breath.  But I am fine now.  Worth it for a day in the mountains with some of the people I love most! 

The big news is that there is a new drug out there for MS and Dr. Logan thinks this would work well for me.  It is a steroid, but I can inject it at home... and if it works, I can have my port taken out!!! As of right now, the insurance company has rejected it, but apparently that is always the first outcome with this drug, and we are fighting to get it for me. 

Living with MG has been like living on a roller coaster ride. For me, the key to getting through has been to just live in the moment.  Life is full of high highs and sometimes extremely low lows.  You can't spend all your time getting stuck in those moments.  You just have to endure and make the most of what you have.

Remembered Voices

I went in yesterday for a gram of solumedrol.  Not a big deal since it has been almost 5 weeks since I had a treatment!!!  That is amazing considering that most of last year and during the summer I was going in about every third or fourth day for steroids as well as being treated with chemotherapy.  Not to mention Jason has been deployed to Guam for the past 6 weeks.  The strain of being both Mommy and Daddy to the kids would in the past have put me into a crisis, I am sure.  I am thanking God, my doctors and all of you for the break in symptoms!!! 

I have also started a new job as a freelance writer, which I am very excited about.  As some of you know, I was part of a focus group for a new locally based company.  The company is called Remembered Voices and they sell a really cool product called The Voice Library.  I got really involved with them after challenging them to provide their service to as many military members as they possibly could.  On Memorial Day weekend, they distributed 500 gift cards to soldiers deploying to the Middle East.  To my amazement, several newspapers and Fox news sat down and interviewed me!  Not at all what I was planning, but an excellent way to get the word out there and to support our troops.

As I became more and more involved with the company, and they asked me to do some writing for them!  I am very pleased to now be part of the Remembered Voices team.  One of the things I am working on for them is a daily blog.  I would love to share it with all of you and anyone you think might be interested.   http://blog.rememberedvoices.com/

I will continue to write here about my family and my health :-)


Again, I thank you all for following my blog, for praying for me and my family, and for being such a huge support to us over all these years.