Notes so I remember:
The day started with my daughter yelling at me because her brother got a flu shot yesterday and she didn't. (This from the kid we literally chase around the kitchen table to give her the shot each year.) My husband brought an extra flu shot home from work, my son willingly rolled up his sleeve and that was that. After convincing her to go to school and promising we'll get her flu shot ASAP, we got on the road to come to Fort Wayne.
Two other ladies are here getting meds alongside me. Looking at her, one looks like she walks ok. I was here with her last year, my last day and her first day. I remember she had a horrible reaction, she was so hot and we kept calling the nurse to come put fans on her. She's fine so far this year. Oh wait. Now we have one hour left and she's fading. And she can't feel her legs. This medicine is scary.
The other lady walks JUST LIKE I DID before I got my power chair. Her husband is here with her all day. He brought her in a wheelchair, but helps her walk to the bathroom. She told me she uses a walker at home.
And me. I came in my power chair of course. My husband is with me and helped me in the bathroom. While in there we both yelled and I ended up sobbing. This medicine and this disease and this disabled lifestyle is scary.
After the bathroom trip I asked him to leave for a while. We needed breathing room. The final 15 minutes of my medicine dripping into my IV caused some stinging in my hand. Seems during the bathroom fiasco we bumped the needle in the back of my hand and the meds still dripped in, but not in the vein. So I don't get to keep the port in, it had to be pulled out due to the puffy medicine just hanging out under my skin. I was told it will absorb through the tissue in my arm overnight and they'll put a new IV port in tomorrow.
By the end of my meds, my blood pressure is high (unheard of for me) and my breathing is labored. We're blaming the steroids. (Lemtrada is infused after an hour of steroids and a huge sleeping beauty sized shot of Benadryl.) All patients stay after the medicine is done for a two hour observation period. Wish I could do a dance or a magic show to give them something fun to observe!
The wifi here is sucky to non-existent. Luckily Netflix and Amazon both offer download-and-watch. I'm getting caught up on Narcos and Transparent. And reading too, of course.
I'm supposed to be drinking water like crazy, but going to the bathroom here has proven to be too stress inducing, so I'll drink tonight.
(Water, Alina. You'll drink water tonight...)
Can't wait to get home, hug my kids, hear the stories of their days, and GET IN BED.
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