I usually intensely dislike home health physical therapists. Two of the PT’s I met for my wheelchair evaluations were great. For the most part, the visiting ones are, well….morons. The guy was condescending, blatantly rude and not too bright. I didn’t like him the first day and I despised him today.

If Heather were here, she would be chastising me right now for letting him come back. Sigh…. Somehow I am not forceful enough. I say something is hurting me, or is making me worse, and am either not believed, or they don’t care. I sit there, stare straight ahead and cry. Finally I said no more PT.

I repeatedly told the guy that how much I can move and do things depends on when I last took my Motrin and Mestinon or if I am on steroids or IVIg. When I am this swollen and out of breath, doing anything more than necessary is wicked painful and sets me back for days. He just didn’t get it. I tried to explain that without IVIg, I have to sit very, very still to be able to keep breathing. No matter what I explained, he gave me the standard lectures about use it or lose it. If only that were true with MG!!!!!! Every time the neuromuscular junction is used/stressed, it takes a long time to save up enough strength to do the next thing. Probably only people with MG can ever understand….but you would think a PT would TRY!

It has been more than 6 hours since he left. The lowest part of my back that has inflammation and stenosis is in screaming pain. It makes my arms and legs feel even more like dead, lead weights. Certain positions he wanted me to be in for exercise, set off the buzzing, tingling, tuning fork feeling in my legs. Now my feet are on fire with neuropathy and my hands have joined them 😦 Of course in the PT’s eyes, I am lazy and don’t want to try hard enough. I wish I could give him my body for a day…..no…..a week…..forget it…..a YEAR!!! I sure would not want his as a trade-in though :-p

I looked up the average salary for a home health physical therapist. It’s around $75,000 in SLC. Wow. He sure doesn’t earn it. Even if I had no special issues, I would have found his personality difficult.

After my morning shower, I took a good look at the new bump popping out from my giant hernia. Not good 😦 The skin has color changes and the bump is bigger than yesterday. A hernia like this can get pinched because it’s coming through a different layer than the big hernia is. Sometimes there are sharp pains there, sometimes it stings. The PT made it worse 😦

And I should keep track of what happened last night. I went to bed soon after 9. I burped a whole lot as soon as I got flat. Then the hiccups started. Not nice little hiccups….violent, sharp, strong hiccups. They went on for at least an hour until I blessedly fell asleep. I woke up at 1 AM soaked in sweat and in pain. Got up, took meds and went back to sleep. It did not help my temper that I had to get up at 7 to be ready for the PT at 8. What a waste of sleep and life! Can you tell I have zero respect for the guy? Pffffffttttttttt….make that negative.

So…..the nurses coddle me too much and the PT not at all. Is that like good cop, bad cop? I am a crummy patient. I totally enjoy having people to talk to and to help me…..but I hate, hate, hate people trying to play power games with me. As soon as I am supposed to shut up and do what I am told, just because someone makes an arbitrary decision, I go nutso. I loved my wound care nurse that I had for 4 months, because he was just naturally soothing and cooperative. He didn’t randomly decide to hurt me. I think some of these “caregivers” get off on power over other people when they are most vulnerable. Creeptoids!

The phone rang. It was a mysterious call from the pharmacy. They will be delivering meds in a couple of hours. That’s odd because they never call me first. I wonder what’s up? Oh, geeze….I need to go to the bank and get some cash for the pharmacy. Maybe they knew I needed to do that 🙂

It’s raining here in SLC, but it’s snowing in the nearby mountains. Good thing I have hardly been eating. I don’t need to go buy groceries. Here’s hoping nothing extra bad happens to me, because I really don’t have enough strength to go to the ER. When I go in my power wheelchair, they usually let me stay in it, and not the bed. The ER beds hurt like crazy and the fluorescents make me sicker than I was to begin with. Sooooooooo tired and weak……