I don’t know if I have the energy to tell this story. Writing long pieces has become harder lately. Short , pithy, smart ass, commentary on crap I find in the news is much easier for me these days and I have fun doing it too.
BUT…I do have the next installment of the ongoing memoir as-it-happens of Gianna’s life in my brain. So I’ll give it a shot.
As you know I was approved for home care. Or in any case my doctor gave me a diagnosis that amounted to saying I was physically disabled as a result of chronic prescription drug use and he referred me to a home care agency for physical therapy and anything else I might be eligible for.
The woman from the agency came out about a week later to assess me and was very nice and I felt quite optimistic. She told me she would get me lined up with a occupational therapist who would help fit out my bathroom so I could more easily bathe which has been real challenge. She also told me I would get a physical therapist and that perhaps I might be able to use a pool for physical therapy. The pool sounded especially nice, though I am concerned about chlorine since I’ve developed a lot of chemical sensitivities.
The occupational therapist came out and was awesome. He’s been really great and he put a bench in my tub and I will soon have a shower head with a chain so I can sit while showering. He was a really nice guy who joked around with me about how fucked up the system is. A real person.
When I met these first two people I was verbal and able to sit and seemed relatively okay. I liked both of them. And felt that they cared about me and were attentive to my needs.
When the first physical therapist came it was about 2 days after a Klonopin/Valium switchover and I was sick as hell. I was in pain, I couldn’t look up, and I was basically in the fetal position. She sat behind me so I couldn’t see her face. She did not try to make eye contact or even look at me. She asked me what I wanted. I told her I’d like to have range of motion done as I don’t want to lose flexibility and strength. She told me she can’t do that because it’s not therapeutic. I then asked her what she would want to do with me. She said she would do seated and standing exercises. I told her that most of the time if I sit or stand I get nauseous and that wouldn’t work but I’d be willing to try next time she came. Certainly that day I was in so much pain I don’t know what she was thinking.
When she left I was so out of it I wasn’t thinking much of anything critical or otherwise, but Daniel told me he felt that she was cold and inattentive. I started thinking about the exchange and realized to say that moving my arms and legs around (range of motion) was not therapeutic was bullshit and that she clearly had no interest in meeting my needs or trying to be creative with my situation. I realized that this might be mandated by Medicare, but I figured the least she could do was acknowledge that, so I decided to call the agency and ask for someone else.
When I spoke to the agency I was then given the third degree about why I did not want this physical therapist. And the woman was rude to me. I told her that perhaps my expectations weren’t accurate but then it would have been nice to have that explained. I told her it’s ridiculous to say that doing range of motion is not therapeutic which she grudgingly agreed and then said that they couldn’t do it because it was not “skilled” work, but that they could come train my husband how to do it.
I said that if he needed to be trained it sounded like skilled work and that he works 18 hours a day and I really need someone doing this for me. She went off on some long explanation which got me confused and I said I didn’t understand, my brain is a bit fried. I meant it and was not being sarcastic. She sarcastically said, “your brain is just fine.” I calmly said, “no, I mean it, I was not being sarcastic, I really did not understand you, but forget it I don’t have the energy to talk anymore.” We got off the phone and I felt sick inside. I was now officially a “difficult” client and I knew it as I’ve worked in these systems before and I know how the people think and talk to each other in social service agencies.
The new physical therapist came today. I was a bit better today so he just started me doing exercises on the couch where I was lying. I lifted my legs ten time each. I flexed my feet. And I raised my arms up and down. He was sorta militaristic about it standing over me with his feet spread out to his shoulders and his arms on his hips. I kinda got a kick out of it and thought, “ah, well what the heck, at least I’m moving.”
But then he started asking me details about why I was sick. I don’t know what he read as far as the diagnosis went but I tried to be vague and just told him I was toxic and perhaps had something like mytochondrial damage but that was pure hypothesis at this point. I really didn’t want to tell him anything as I don’t trust people to believe me.
He started arguing with me! He was telling me there was no way the drugs could make me sick! I got angry and told him that it was not my job to educate him about my diagnosis and if he didn’t believe I was sick he could leave my house right then and there.
He backed off and so did I. But then he preceded to start telling me that I just need to get up and move around. It was clear he thought this was a psychiatric issue. I suppose it goes without saying, I will not work with him again. He left and I was profoundly sickened and saddened. I cannot tell the agency that this guy was even more of an asshole than the first person. And I won’t.
I do want to see if I can get to the pool and see what the pool therapist is like. Otherwise I will stick with my occupational therapist and have no physical therapy support.
On a more promising note, a friend of mine told me about a small non-profit group of volunteer body workers and energy workers etc. who work with people who are house bound for whatever reason. I called the woman who leads that group and her first question was “do you know what complimentary medicine is?” I responded with, “that is all I use, I’m pretty much anti-western medicine, it’s what made me sick.” And she said, “oh, good, we’re on the same page then.” She is an traditional RN and also has some sort of holistic RN license. What’s more she has a history like mine in which she suffered from some form of chronic fatigue and got treated like she was nuts by mainstream medicine. She has recovered now, but knows exactly what I’m dealing with and doesn’t doubt it for a minute.
So trash out (mainstream home care system), healthy alternative in. She has yet to call me back so I don’t know what will be offered, but she did say I was eligible for their services.
Also about 4 or 5 weeks ago I hired a young woman to come spend time with me for 2 hours two times a week. She is proving to be a wonderful companion and she also does simple house cleaning and the laundry. AND most importantly she takes me shopping. I can’t handle the whole shopping trip on my own anymore. I can’t drive, nor do I have the energy to stand in line. So she does all that and carries the groceries to the car while I wait there, BUT I get to pick out the food, which is still very important to me.
And a nice little surprise bonus. She works at my favorite grocery store so I get a 25% discount on my groceries. A perk I wasn’t expecting. I still think overall the universe is doing a lovely job of taking care of me. But as life has it, I get wrenches thrown in the mix from time to time.
But boy dealing with that physical therapist confronting me to my face about my illness was the most offensive painful thing I’ve had to endure in a while. And dealing with that woman who thought I was pretending when I couldn’t’ understand because I truly have cognitive problems was painful too.
And I think about all the people who don’t have a mind as sharp as mine and who can’t advocate for themselves and who would let their spirits be crushed when an asshole told them their physical disability was in their heads, and I know I have to keep fighting, not just for me but for everyone who finds themselves ignored by their medical professionals.
I do still have a wonderful cooperating psychiatrist, Jungian therapist, general practitioner and a few other professional people who deeply respect my process on my team and I’m profoundly grateful for that. I am all too aware that most people have to deal with people like that physical therapist every time they go see their shrink. People who just won’t listen.
And so I continue forward.