But to be back, at the same time of year, for basically the same reasons, is rough. It puts all my hard work aside and only shows what I am today, which, thanks to MS, isn't lovely.
Yesterday I learned some news about Cleveland that put some sense around the idea of why they sent me packing after seeing me. Apparently, according to the notes from the doctors that I saw there that were sent here, I am beyond repair, a flopping noodle, never to be able to walk again. Excuse me but wth?
I knew this is what went through the doctor's mind but I never would of thought that he'd put it on paper. During the appointment he was very understanding, listening, rolling around ideas. Then he had me walk and his whole demeanor changed. I was no longer someone he wanted in his office.
My thoughts: he's a big shot doctor well known for his ability to work with patients with spasticity. Perhaps he didn't want to put in the effort of working with me. Perhaps my aggressive disease would mean a blow to his pride, a dip to his numbers, if he wasn't able to help me. Regardless, I'm not a fan of him.
The doctors and therapists here have hope and are certain that I will definitely walk again and function as needed. They are being smart and creative in working with me to get me better. I am confident in their work and ability just as I was last year.
On top of the Cleveland sucks news, there were some other incidents yesterday that just werent making it my favorite day. So, to get away from it, I turned to Facebook to check up on lives.
The first thing I see :
This was a status of a person I once looked up to. I admired her style, her character, just her. She was a good one. Yet this status deeply made me disappointed.
Granted, salons are a central gossip location. That's part of their "charm". But to take that gossip to Facebook, proclaiming the audacity of someone with a disability asking for assistance, just rubbed me the wrong way. What's the difference between holding a hearing aid and holding a pair of glasses? My hair dresser always makes sure to take my glasses, with care and no degrading sarcasm. And were facebook friends and I have yet to see her complain about this (or anything salon related).
The difference is that a hearing aid is electrical and also very expensive. Water damage is bad news bears. The salon should be happy to have that patron take responsibility instead of coming back later with a medical claim for the salon to pay for their water damaged ear piece.
Plus, it made me think "if this is what they are saying about an ear piece, what the heck would they say about me?" The girl with arm crutches and glasses. They probably wouldn't let me in the door!
Moral of this story: be nice. Yes, Facebook is your place to publicly proclaim your statements. But don't use your free will as a chance to bully others. Think twice. Lesson for all, myself included.
So after all this it would be very understated to not share about the joy brought to me by my visitors. One of my moms great friends brought me lunch, Starbucks and treats, plus entertained me for my lunch hour. Another one of my moms friends brought me grapes and snacks and then went on a tour of the hospital with me and spent some time in the sun, chatting about life. And then (I know...it was a great visitor day) two of my "cousins" (related in every way but blood being the explanation there) came to visit with their son/nephew. Precious and so lovely!!
Today was a better day. Weekends are quieter, easier. Plus, I even got some sun time. But the overwhelming factor came full force in my afternoon physical therapy session and I might have had a slight breakdown. I won't apologize for it. Honestly, if I weren't feeling emotions of just plain blah then I'd be worried something was wrong. It only took 1 Kleenex and a few minutes and I was back.
This is hard. I'm spending yet more weeks of summer in the hospital. It's not glamorous, there's nothing fun about it. Yes, I still do my best to make myself presentable just for my sake and yes, visitors and love make me so happy. But it doesn't take the hardship away.
In summary: Cleveland is not my best friend, I'm staying away from certain salons, I have great friends, family and community, it's ok to cry sometimes, and keep your head up because, well, in the wise words shared before, your crown just might fall.
Love, Eliz