Brief update—in search of homecare

Things continue to be rough with the Valium crossover. I stopped until I stabilized a few days ago and then cut by only .125 mg of Klonopin and added 2.5 mg of the corresponding equivalency of Valium. I’ve been pretty out of it again and I cut the dose of the exchange in half and have waited several days. I suffer especially at night and I think it’s Klonopin withdrawal until I get used to the Valium replacing it. I get weird and non-verbal and spacy. I’ve been rather disoriented today in a way that feels scary too.

I have horrible pain in my spine and feel flu-like. This is all in addition to feeling shitty already in a myriad number of ways so it’s just a scary thought thinking about how long this might go on for.

I still get the impulse to do things. To go out. To shop, to go to a restaurant, to visit a friend. And then I remember with a pang of remorse that my body won’t cooperate.

Tomorrow I’m going to see my general practitioner to see if he can give me some sort of diagnosis that will fly with Medicare so that I can get home care—specifically physical therapy and then whatever else the home-care agency thinks I qualify for. I want my limbs stretched as I can hardly move. That will be nice.

Right now I’m imagining the diagnosis I’d give myself:

1. Psychiatric Drug Damage

2. Chemical Injury

3. Iatrogenic Illness

4. Mitochondrial Damage

I don’t think any of those would fly with Medicare. I hope I have a creative doctor who comes up with something legitimate that works. He is a man with a strong sense of integrity so he has to feel comfortable with whatever he diagnosis me with and that is fine by me. I wouldn’t want it otherwise. The home-care agency said they need a primary diagnosis with something like generalized weakness and muscle atrophy as secondary diagnosis. They said they might be able to swing it with just the secondary diagnosis. We’ll see.

I’ve planned the trip to the doctors so I don’t have to go in the office, because even though my doc is nice his practice puts big ol’ pharma screens in the waiting room pumping out pharma commercials. Last time I went I swear I was totally traumatized by the time I went into the exam room. I wouldn’t go to a regular doc of this nature at all but I need him for Medicare. If I could I’d never walk into a traditional doctor’s office again in my life.

I will wait in the car and Daniel will come get me when they call me into the exam room.

Then I’m coming prepared with a small fold up futon to lay on the floor in the doctors exam room because the table I had to lay on last time was excruciatingly uncomfortable and I waited in there for two hours in pain.

So a futon and some blankets on the floor. Don’t know what the heck he and his staff are gonna think of me camping out on his floor, but frankly I don’t give a damn. I refuse to go through what I went through last time. And this society does nothing to accomodate the seriously physically ill and so I’ll do what I need to do to make myself comfortable.

Peace to you all and thank you for all your ongoing love and support. Couldn’t do this without you and now I really know that because when I’m so sick I can’t get on the computer is when I really panic. You keep me going. You force me to exercise my brain and keep my spirit alive. The thought that I might save even one person from ending up like this in the long run is enough to get me to work almost every day even when I feel like I am dying. And that is no exageration.

It also motivates me to take good care of myself. To force myself to eat when I have no apetite. To continue taking my supplements and to meditate daily. I cannot be there for anyone else if I do not do my best to take care of myself and live what I believe.

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20 thoughts on “Brief update—in search of homecare

  1. Continuing my MO…

    I’ve been (re)reading your about page and you have such a wealth of resources here, G. You are such an inspiration and you have poured your heart and soul and everything into this site and it’s evident. I’m glad you’ve finally been able to get the help you need.


  2. oh…by the way…when he saw me on the floor on the futon he smiled and said, “this is a first.”

    I raised my fist in the air and said. “self-advocacy!!” and told him how awful my last visit there had been because I was so uncomfortable…he was very nice.


  3. thanks all…

    he does play by the book but he is also a really nice guy who BELIEVES my tale!! And that is amazing in this world where docs think psychotropics are just dandy in general.

    I’ve been seeing him since before I started withdrawing…

    in any case…he did indeed come up with a diagnosis that included language that did amount to meaning “drug damage!!!”

    talk about feeling vindicated!!

    he called it muscle weakness and atrophy secondary to chronic medication usage …or something like that….

    he thinks it will fly with medicare and I will find out next week when the home health people visit to do an assessment.

    if not he is willing to revisit other possible alternatives like “chronic fatigue”—as I do have the Epstein Barr Virus…but I’ve had it since I was 16…

    he thinks this diagnosis is better for my ongoing medical records because he has been documenting my reports for several years now…

    my disability was suppose to be reviewed last March …so now this docmentation will help me as I have no intention of being on record as mentally ill anymore…it was the drugs that disabled me….

    there is no question in my mind about that and I want it on record.

    anyway…I’ll do a post on all this once the home health people visit!


  4. If you don’t qualify for home care, there’s no justice in the world. Your doc sounds like he plays by the rules, but I hope he will be empathetic and think outside the box. Much love to you.


  5. Gianna:

    And you have certainly saved me, too! You pointed me in the right direction when I needed a mentor to explain all that is going on with me and who will work with me and get me on the road to recovery. All that you do, every minute detail, does this for everyone who comes here. And I feel the same way as Susan – it’s hard to read what you’re going through without tears, but I do understand that sense of humor, too. I’m so glad you have it – that will bring you through much. I wish you the absolute best in your doc’s visit and getting the Medicare aid!


  6. Laura,
    don’t have the fear of God in you…I’ve been coming off 6 drugs for 4 years…it by no means is only about the benzodiazepine….

    I’m not sure what your history is off hand (I’ll go do a refresher when I have a moment on your blog) but I doubt your history is as long or as complicated in the drug department as mine is…

    and there are ways to do this safely and slowly and even though benzos alone can be extremely nasty, most people DON”T have a extremely nasty time…a large minority, yes, but not the majority. And most of the people I’ve met who have had a nasty time with benzos did something stupid like a cold-turkey withdrawal at some point or another…

    so please don’t be scared…set out methodically and systematically and prepare you body/mind and spirit. Do some reading…there is lots of info on benzo withdrawal out there and lots on this blog…(resources I link to and pieces I write)


  7. I’ll be eventually trying to wean myself off Ativan in the future, after I get myself off the Risperdal. This post puts the fear of God in me. I don’t know what I will be up against.


  8. gianna,

    you should make a comment on the rolling stone article….link your site for safe drug withdrawal/recovery…

    i just did, with a mention for the need for safe withdrawal, and was tempted to link your site, but thought i should mention to you first, and see what you thought….

    you have to register, but it only takes a few minutes…if you’re tired tomorrow, ill make a second comment and link your site (if you’d like)…it would help some people



  9. it wasn’t a big deal Duane, not at all…just no one time I would have done a bunch of link collecting and stuff…but I can’t do all that anymore…

    I didn’t feel angry at all….just unable to keep it up.


  10. “The thought that I might save even one person from ending up like this in the long run is enough to get me to work almost every day even when I feel like I am dying”.

    – You have.

    Sorry about our argument today….It was probably a good thing that I got a taste of some humility….I don’t know everything (obviously)….

    Thanks for all you do,



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