Two Years!

Yes, its been a really long time since I shared, and as I type this its crosses my mind that I've not checked on what my last post was.  Suppose some would say dont look back, it doesn't matter, type on sistah! Others may say I should really look and connect with the last post so as to pick up where I left off and maintain consistency.  (If you could only hear the inflection and tone in my head with either of those personas).

I sat down to type this morning with one clear thought in my mind, REJOICE.  This word has been stuck with me since church on Sunday.  "Rejooooice! Rejoooooice! Emmaaaaan-u-el...."  

My immediate reaction to this word is that I have SO much to rejoice for.  We are now TWO YEARS since the last Plasmapheresis treatment and first round of Rituxan!  That IS something to shout about.  In my last post, you read what Medical Remission means to me, what we do, how we live, etc.  In the world of Myasthenia, we are also working with many people around Texas to assist the upstart and continuance of support groups. We do what we can to share awareness of Myasthenia Gravis. 

After that initial reaction to 'Rejoice'...the second thought consumes me!  When did I FIRST joice?  ...ponder that!

Happy Friday!

Scattered, Smothered, Covered..with love

Hey, yes, its been a long while since I've posted.  It means a lot to get your notes asking for another blog.  The Lord knows I like to talk...and when you encourage that skill...well...you know...

Today gives me reason to chat.  My body has made it 9.5 months since the last Rituxan infusion in October of 2012, and truthfully I'm still going strong.  That said, the antibody levels began to climb and I could feel the symptoms creeping in. So we scheduled our next infusion, and today was the day.  Awesome!  I keep saying that we just infused another 9-10 months of medical remission.

So, what does medical remission look like?  For me, this past 9 months have been fun. We wogged (Walk+Jog) the annual Turkey Trot in Austin, we took part in the MDA's Muscle Walk and the first annual MGFA MG Walk in Grapevine, TX, I was able to play 2 seasons of softball and even pitched again; we've visited friends and family all over Texas; we've welcomed friends and family to Austin, from all over; we've zip-lined around Lake Travis (I use the word 'Lake' loosely); we've toured funky chicken coops around Austin; we visited Shelter Cove, CA and Nashville, TN.  Who has time to sit still? We've taken part in these adventures and many more, and my body wasn't whipped into crisis or symptom mode.

I thought this morning, 'What a blessing Rituxan is!', and while talking to myself, celebrated the many talented minds who work to design and deliver such a powerful tool.  Then my mind was shifted. How about 'What a blessing my diseases are!'.  Yeah...Soak that one up.

Ok, enough from me today...I'm scattered like hashbrowns at Waffle House.

I'm awake!

Happy Thanksgiving!  There is so much to be thankful for and the words are constantly spinning in my head. Do you find that sometimes the words really aren't there? ...There are no words.  Sometimes you simply feel what you're thankful for, or maybe you know what you're thankful for, but can't find a word. I'm in that place this week. There really aren't words, but to know me, is to know this wont stop me from rambling right along.

Thank you, thank you to the handful of friends (and you are!) who nudged me along. "We last read you were taking a nap in the infusion room...did you wake up?".  Yeppers, I did, and all went very well.

Four years ago today (2008), my first MG symptom came on the scene.  Woke up, brushed my teeth and was unable to spit the toothpaste out because my tongue would not move (awkward - try it sometime). A few months later we received our diagnosis. Skip ahead two years (2010) around this same time, we learned of the MS diagnosis too! At this time in my disease process, we were relying on plasmapheresis multiple times in a week to halt the MG, and daily shots to slow the MS.  One year ago (2011) around this same time, we began our journey with the last drug we knew to try, Rituxan.  This year (2012), yesterday, I attempted...I mean we COMPLETED a 5mile fun run.  Amen? Oh heck yeah!

We wogged (walk+jog) our 5 miles, but by golly, we finished! Yes, I slept through the 4th quarter of the football game last night, and it's ok. Yes, every muscle is sore today, and that's really ok because I'm reminded that they worked!  Yes, I'll hit the wall later today, and that's ok too, because I'm still breathing!

Here's where the words are a bit lost for me. I have nothing but joy for the journey we've had these past 4 years. Would you wish it on anyone? No. Could it have been far worse? Yes!

Through this journey, I've met soooo many amazing, wonderful, kind, joyous, warm people, and many I now call friends. This journey immediately refined the relationship Lee and I have. This journey accelerated my appreciation for life and death.  This journey showed me how easy it is to become vacuum packed in our own little worlds, so that we aren't aware of those around us and the burdens they bare.  This journey strengthened my faith in GOD. This journey has shown me what beautiful, amazing, intricate creations we are, and that we are not simply understood, nor should we be. This journey has proven that not one person has the right solution, but that through many willing people with like focus, remedies can be found.

I could preach.

This week, I am thankful for so much, and to list it all would be a futile attempt, but the words keep scooting through my mind.  In brief though, I'm thankful for my faith in God, for my family and friends who have been lock step, for a medical industry which I so highly respect, for a body that remains strong enough to fight, for a spirit that will not remain quiet, and for electronic mediums so that I can continue to share my lack of words. HA!!

Leftovers anyone?  Lets eat!

Just another day in the Infusion lab.

The Benadryl is pumping into my arm right now, and sleep will soon follow. Its Infusion time!  We've made it ten whole months, since my last IV infusion of Rituxan.  Bloodwork and mild...very mild...MG symptoms, are my guide.  I feel good and wouldn't know my body was fighting anything.  Oh the joy of denying reality.

I'm sitting in an Oncology Infusion lab, amongst lots of quiet talk and beeping machines.  I suspect most everyone here is receiving chemotherapy of some variety.  Each patient entertains him or herself with a computer or a book, some nap, others chat quietly. I can tell when someone has been visiting with some regularity, as the Nurses call them by name and hugs are exchanged when they enter.  They remembered me today, and even noticed a difference in hair color (yeah, I color, so?). Its a feeling a familiarity and being with friends, that helps keeps the blood pressure low, and they check each half hour.

Its so easy to get wrapped up in my day to day routine and any stress that comes with this.  In revisiting my hospital family, I remember there is so much more to think about. One gentleman just arrived, and he brought baked goods to share. We learned last year, this behavior is fairly common...and tasty! Today's cake is intended to celebrate this gentleman's birthday.  Ironic and beautiful!

No matter your struggles, the hurdles or pain, remember that each day is worth it. Celebrate life!

Rambling - 5 mins...GO!

It seems I've been finding every excuse to not post a report/blog/update.  I have so many thoughts that creep through my brain day in and out, and so many that I actually want to share.  ..and then I don't.  I'm making the choice to spend 5 mins right now, to think about my journey, and to share those thoughts with you. 

Alls good. Thanks.

HA!!  Isn't that how we typically respond when people ask us "How are you?".  I expect its really small talk and no one truly cares to know what's going on.  So I don't dive in.  Then I shake myself, and think, "Ya know what, if they don't want to know, they shouldn't have asked"....and I start to rattle off my 'stuff'.

Why do we shy away from our stuff?  Is it because we don't want to burden anyone with it? Maybe we're tired of hearing ourselves talk?  Maybe we don't feel that we're really interesting enough, or valuable, that someone would really care to know more about us.  Yes to all of it, I'm sure, at one point or another. 

For me, I've been tired of MG and sick of talking about it.  I'm so blessed to have the experiences we do, through Myasthenia Gravis, but damn. Now, I'm only being blunt with you, because I'm pretty sure you'll understand me, not because I'm tired of being cared about or worried over.  That's not my point!  I've taken a mental break from the MG/MS game, because I needed to recharge myself.  You have to care for your soul and be strong for the next battle. 

In a nutshell however, all is great!  We are now 8+ months since the infusion!!!  Amen, God is great!  I was able to enjoy myself this weekend, by swimming. Yes, swimming!  I can't tell you how many nightmares I've had about falling into a body of water, with a chest catheter in.  Ug.  This weekend, we travel to the mountains to enjoy climbing around a bit.  Next month, Lord willing, we'll travel to a beach to enjoy laying around a bit.  We have traveled so much this past year, and what a joy it has been. 

It has been nice to travel and not worry about bandages and supplies and symptoms and medical facilities and stuff.  It has been a joy to be able to (cautiously) plan adventures with friends, family, on our own.  It has been a wonderful break from a routine of hospitals and doctors (though I love them all dearly!).  So many ask 'Where are you going next?" or they comment "You two travel more than anyone I know."  That's beautiful!  Who knows how long we'll have to travel? Who knows how long the peace and quiet will reside with us?  Who knows how many National parks there are in the US?  I don't know any of it...and I'm interested to find out!

The antibody levels in my blood have begun to increase again, which means a follow up infusion is in the near future. We'll schedule that soon and when we do, I'll embrace the therapy, because I've accepted it is necessary for me.  This infusion therapy is a gift, after so much time without it.  A gift in teaching me how to choose to live my life. Better put, choosing to live life...because I can.

..was that 5 minutes?




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