Sunday, November 18, 2012

Thanksgiving in Struggles

What a crazy time right now!  As a wise and lovely mito friend worded it, it's hard to know when the train is going to stop, or how fast it's going to go.  You wish you can hit pause.

I returned to Milwaukee for clinics earlier in the month.  Right now I'm dealing with the harsh realities of progression; which is including worsening in my respiratory system, crashes, worsening of symptoms, and little energy.  We're trying to get equipment, including a biPAP covered at the moment.  Last week when 2 EMTs entered my home to take me to the hospital because I'd collapsed on the floor hours before, I coulI d hear one saying she remembered this or that.  She was one of the two who took me in the day I became dangerously septic.  I was able to get home later that night, using my wheelchair, as I needed my TPN on time (ish ;D) more than round the clock banana bags (dextrose/magnesium/multivitamin IV fluids) and nursing care.  I was doing better the next morning, but pushing it too hard too fast caught up to me the following day, and I began having a lot of weakness, ataxia, and complex migraines as we were headed into my PCPs. We love her, and her understanding and kindness made the situation easier as I tried to stutter out some answers for her.  The rest of the day was a comedy of errors, but aside from being quite wiped out the days to follow were rather uneventful health-wise.
Beth and I at the play

I was able to go to my first broadway show, something on my bucket list, this week!  That's two things crossed off in one month thanks to the kindness of friends and strangers.  My dear friend who took me to the play said I'm not allowed to check things off too fast, or need to add more items.  I have SO many things I want to do, it's going to take me ages!  We had an awesome time, and it was an incredible production.  I'm so thankful, such wonderful memories.  The other item I was able to cross off was fly a plane.  It was only for a few moments on my own, but it's something I've always dreamed of doing, and I got the opportunity when flying home with one of the Angel Flight pilots.  We have met so many amazing people, I can't imagine life without them.  But if I wasn't sick, life WOULD be without them.  And truly, that makes my heart drop.

copilot! I even got to pull up w/ him during takeoff, which felt so cool
I paid for the trip to Wisconsin and going to the play though, it takes so much energy just to speak, so I am pretty quiet most of the time.  It's hard to explain how it feels to be that tired, and I ask that those around me will have patience when I am silent.  I have so many words that I would like to say, but it is too difficult.  I have so many places I would like my feet to take me, but the ache with the strain of just standing.  So I will pick my battles, say the words that I can and walk in the area that I am able and be grateful that I can still do that, because as I do I often think about the many times when even that was impossible.  Especially as Christmas approaches, and the multiple hemiplegic episodes took away so much.  Although we all agree, that Christmas we spent in the hospital was the best one we ever had!

Happy Thanksgiving!
With love,

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