This is double-pronged, Reader-land. So, you know how I’m sick and all that, and everyone gets sentimental around the holidays. So I thought I would just update everyone.
First off, let me just share how awesome Mel is. As I progress, her workload goes up. And it’s not an easy action. Do you realize how hard it is to put clothes on an adult in a wheelchair? What about making sure he doesn’t drool everywhere while dressing? Getting up on a Saturday to get me up because I woke her up? Crushing pills, picking my nose, giving me showers and preventing me from falling as we transfer chairs, and wiping my eyes. I am completely dependent on Mel, even more so than the kids! They can feed themselves! So a huge thank you to Mel for showing me what matrimony is all about!
Secondly, I have had some weird realizations with ALS. One, you do not lose feeling anywhere. You feel everything. You have to train yourself to ignore itches and stuff, and if something catches the bottom of your foot, all the muscles spasm. Two, things hurt that you don’t expect. Seriously, why do my hips hurt? And one thigh is always in pain. And three, things are really tiring! Just holding my head up to type, or trying to interact with people, or even worse trying to talk without Tobii, it’s tiring!
Because of increasing pain, a palliative care specialist came out, and she was great! She listened, and came up with a medication plan for me. Unfortunately, I reacted poorly.
My stomach is still in knots, and I now have painful stomach gas, the pain got worse, and so we discontinued two of the meds. The third is helping me with saliva, so we are keeping that one. Oh, and palliative care is not hospice, ok?
Otherwise, I am progressing. Nasal drainage in the back of my throat makes it hard to breathe. My right arm is weakened so I can’t drive Lively. I can’t hold my head up for very long. My hips, thighs, and back always hurt, and my breathing is shallow. I’m not complaining, but instead sharing valuable information for those who may follow!
They never tell you what to expect. Oh, every case is different, but every time we call up it’s like they are checking a box of anticipated symptoms. “Oh, hips hurt? Yeah, that is normal.” So I am sharing my symptoms with the world so that anyone can learn what to expect. How noble of me.
Otherwise, I’m in trouble. This marks the first medicine that I have agreed to that I did not ask if it could be taken with alcohol, and I didn’t care either. That must mean I’m further along than I thought! When I no longer ask for something I enjoy because I need to dull the pain, something is wrong!
Back to regularly scheduled hijinks after this. I still have letters to write!