Celebration and Concern

                                                              November 11, 1995

 

I was browsing in a local store the other day when I came across a wooden sign that said, "All this because two people fell in love...."

Jason and I celebrated our 15th wedding anniversary last Thursday!!!  We had a wonderful night out in Portsmouth, thanks to my parents, who came down to stay over with the kiddos.  (They also had a wonderful night... at Chuck E Cheese!!!)  It has been a great 15 years, and it only gets better.  I am blessed to be married to such a kind, funny, sweet man.  I can't remember a day that has gone by that we haven't been able to make each other laugh.  Thanks for being my best friend, Big. 

Today I am sitting here waiting to have fasted long enough to go have my blood drawn.  We are checking for all the regular stuff... cholesterol, Vit D, etc.  Unfortunately, I also have to have a full liver panel, which has me scared.  As many of you might remember, about a year and a half ago, there were concerns about my liver failing-  I had a liver biopsy scheduled, but thankfully, as the date drew near, my liver functions went back to almost normal.  It was concluded that what looked like a major problem with my liver had been caused by IVIg.  Once we stopped that, everything settled down and we were able to stop worrying.  I think my mood for the past few days show that I haven't actually stopped worrying. 

The blood work that I am going for today is just for follow-up purposes.  I am sure it will all come out fine (I will find out on Thursday).  Believing that it will all be okay is all well and good, but there is that awful nagging feeling in the back of my head that is always waiting for something terrible to happen because of all the drugs that we have pumped into my body over the last 16 and a half years. 

It amazes me how much relief I get from just writing about these things.  I am so happy to be writing again... I can't believe how much I missed it.  If you are interested, I am also writing just about every day about Memories, Motherhood, Military and Medicine (and anything else that comes to mind) at
http://blog.rememberedvoices.com/

I am honored that so many loved ones (and some strangers!) care enough to read what I have to say.  Again, all my thanks to those of you who follow my progress, pray for me and think good thoughts.  God Bless you all. 

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.