It’s Monday, a new day, a new week. A few appointments and a couple of rough days kept me from blogging the past several days. I thought I would be going to the dentist last Tuesday but that didn’t work out. They had a cancellation and called. Tony asked me if I was up to it, I said yes to get it over with. When it was about time to leave Tony remembers he never called back to confirm; it had been filled. I was frustrated at Tony for having me put the time and energy in getting ready, but I got over it. His mind is moving in so many directions right now, I would be cruel to not overlook that. I go tomorrow for a cleaning.
We had a couple of house showings and that usually zaps me. The whole ordeal of making sure everything is clean. Tony is all over the house and I’m usually scooting around up here looking for dust or anything out of place that I can handle. Then the ordeal of getting downstairs and leaving for at least a hour, going nowhere, especially since we did stop going to Mcdonald’s, Yay! I’m proud of both of us. Then we come back home and repeat the ordeal of getting back in my room. We used to say every time, “this is the buyer” when we left for a showing. We don’t bother any more after being on the market so long. We just hope in general everyday the right family has come at some point and we’ll get a reasonable offer.
My great Aunt and Uncle came to visit me. My uncle lives here, fairly close by. He also knows what it’s like to be a full time caregiver, he did for his wife as Tony is doing for me now. My Aunt lives out of State, she’s very gracious and has let me stay overnight in her home several times when in the area to save on a hotel room. I love the layout of her home, It’s actually pretty much perfect for a person with ALS.
I also admire how she lives by my motto – A place for everything and everything in its place. It really works people. When you place something back where it belongs, you’ll always know where it is. It’s always waiting for you in its place. I’ve driven a few people crazy with that. I won’t mention names. It’s really tough now because I don’t like asking people to do things my way, but I really feel better when things are done my way. It’s something ALS is forcing me to overcome.
I spent Friday at Emory for outcome measures in ALS patients who are candidates for clinical research projects. It was similar to going for my Validation of Bio-marker study, minus the lumbar puncture. It mostly involved strength testing, a few questions and statements and I had an EIM- Electrical Impedance Myography. This testing needs to be performed in the exact same spot every time so the research nurse used a needle to inject some ink in several small spots. So any time I have an EIM they will know exactly where to place everything. I joked with my Mother about coming with me to get tattoos. It involves applying gentle electrical impulses through limb muscles. It wasn’t painful at all. I also had the vital capacity testing for breathing. I don’t think you ever walk through the Emory ALS Center doors without having that test, which is a great thing. We always need to know exactly where we are with our breathing.
Over the weekend I started to write both Saturday and Sunday, but a showing Saturday and some cramping with fatigue over the weekend kept me from it. So far today I’ve been alright. It’s not quite one of those days of feeling like I can do anything I used to. I feel the restrictions and I’m dealing with a little spasticity but overall It’s a descent ALS day.
My biggest complaint of the day is sugar withdrawals. Tony and I are both making changes in our diet and focusing on eating much healthier. I’ve removed candy from my room and I miss it. I’ll still have it sometimes of course, it will become habit though, and soon I won’t be mindlessly reaching for a hershy’s kiss. It really bums me that I can’t go have a nice hard workout. Sometimes I loved it and sometimes I used to have to get psyched up for it, but I always felt so much better afterward. Amazing what all ALS changes, the dreaded is now the desired. I’m no longer wanting to build muscle, just trying to keep it. I’ve always felt a need to be doing something, especially something productive. I never was one to want too much down time. I can’t go to the gym, I can blog and work on other projects so that’s what I’ll do and I’m happy because it is very productive and important to me. What most would see as an added benefit is I can do it all from the comfort of home in my pajamas and my sweet Abby curled up with me. All is well right now.
Until next time, take care,
This article was written by April