So much for homecare—but there is good news too!

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.

13 thoughts on “So much for homecare—but there is good news too!

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  1. Thanks, Gianna.

    Giving you and other people smiles is my pleasure. Also my pain in this case, but it was worth it. I’ll go back to resting now that I got some creativity out of my system.

    P.S. My lawyer wants you to start following me around full-time, so you can leave a disclaimer on everything I say whenever I speak or write.

    But seriously, you’re probably wise to point out I was joking.

  2. Gianna, the way you were treated strikes me as pretty typical. Sometimes I think I’d rather die than bother myself to go in to see a doctor. I know that’s irrational, but for me, I’ve had better odds at a casino then with health care. Excluding my psychiatric “care,” my satisfactory rating is below 50%.

    And maybe that’s how I should decided whether or not to see a doctor from now on. I’ll go to the casino, if I make enough to pay for my bill or surgery, I’ll schedule an appointment with my doctor. But if I lose my $20 investment at the casino, I’ll go home and watch television.

    But I appreciate your positive attitude and looking at the bright side. I bet it’s dawned on you that if the PT workers had been worth $20 and you kept them around, you wouldn’t have encountered your new holistic acquaintance, who is much better suited to work with you. Blessing in disguise at the time.

    But sometimes a positive attitude isn’t enough. Sometimes you have to rely on other inner qualities to move forward in life and to cope. God gave everyone skills and gifts to accomplish this. Consider using your God-given ability to enact vengeance upon your enemies. Revenge is often a misunderstood gift, but used properly, it can really help people through tough situations.

    Revenge can provide new insight to the people it’s imposed upon. Think of it as a teaching tool. It helps people learn never to wrong you, never to cross you. It helps people learn that if they do something evil to you, there will be a price enacted that may cost them a job, their checking account, or an infrequently used but vital appendage.

    It helps to teach people to think before they act or speak. It teaches them understanding and compassion. Vengeance properly carried out teaches life skills, like the Girl Scouts or group therapy. The nice thing about carrying out plans of revenge is that if executed properly, it’s a one-time solution that helps alleviate difficult problems in your life, and you can be proud that you’ve helped others better themselves and imparted wisdom to your fellow humans. You’ll help people reach their goals of being nice to you, never betraying you, and of doing their jobs properly.

    People will recover from the vengeance you enacted upon them and be much stronger for it, able to more easily cope if they screw up again, develop a resistance to pain and certain types of poisons only available in the Eastern Hemisphere and through magazine ads. Suffering from the gift of revenge can help improve people’s memories (both long-term and short-term), it builds character, like day-camp. Only then can they attain enlightenment, empathy, and possibly a permanent physical scar that will always be a souvenir and helpful reminder of how to properly behave in private with their friends and family, in public, and with their co-workers and clients. Once your victims begin acting in a manner acceptable to you, you can take pride in your well thought-out schemes of vengeance, and feel much more secure in the knowledge that people will treat you with the respect and fear you deserve.

  3. Reading about your experiences with PT is so painful. It brings back the memories of the nightmare of being in an emergency room with my son for 9 hrs. The stories I could tell. We were both treated as less than human and I don’t know when I’ve ever experienced such a strong sense of being wished invisible by others.
    Holding you in Light, as always

  4. Gianna,
    This kind of stuff is hard stuff. There are such mixtures of personalities in the health care system. When my mom was sick we had some really good nurses and some ones that were technically good, but their personalities were certainly lacking, same for hospital support staff and other technical staff. We also had home health care for a while.

    One thing that was hard for me is people were writing her off as being “confused” and she was….but hadn’t been prior to this…whether it was the stress, the physical pain, or the meds, I don’t know. But I do know she got better treatment because I was her biggest advocate. I shutter to thing what would have happened without me or some advocate.

    The elderly and the psychiatric patients get written off as not knowing what they are talking about.

    It’s a tough call to know when to complain and when to keep quiet.

    And when you do complain, sometimes you get better service and sometimes the people on the bottom rung take the fall and get chewed out. Sometime you get labeled as difficult.

    Just remember to keep it civil. Praise the organization genuinely for what you like and they do well, and in a calm manner explain what doesn’t work for you.

  5. I think you may be charting a course where very few in this country have gone before. In Britain, I believe, home care workers have been provided for benzo victims for years now. I admire you so much for the way you keep fighting, my friend. I know that in the end, you will prevail on all fronts. Much love.


  6. Those PTs were so unprofessional and unkind. Can you get the first physical therapist back?

    Gianna, can you speak to the doc who made the referral so he can chew out somebody in authority at the PT place? He should know what that practice put you through. You were mistreated by ignorant, prejudiced jerks.

    Hugs to you.

  7. I love your soft pink underbelly, Gianna…and your strength too…it takes a strong person to feel vulnerable. I hope you find some good people to work with you in your home soon.

  8. So sorry about those two awful experiences you had with the home health care. It made my stomach sink to read it. But also, you amaze me…still managing to look at the positive, and spiritually/emotionally strong enough to let that guy have it when he crossed over the line….I think I would have been one of those people who just let it crush my spirit.

    1. Elana,
      my spirit felt it, believe me. It hurt yesterday and it still hurts today…

      I can put on a positive face and that’s real, but I have a soft pink underbelly too…and I’m not always as tough as it may seem here.

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