Wednesday, December 8, 2021

How to slip out, but only from bed

I've spent my career ruining my back. That's simply one more item to note, seventy nine odd years later. In addition to broken and crushed bits, or perhaps because, my body tossed in fibromyalgia. I wonder how we dealt with it a century ago?

I was referred to an arthritis doctor at least thirty years ago, and kept fairly comfortable with minor arthritic pains. But the day my back went into spasms, like wash boards across each other, the only doctor who listened was my arthritis doctor. Fibromyalgia, he declared. He prescribed a mild dose of Lyrica.

A drug addict I'm not. But I am dependt on several meds for my well being, for relief of back pain. I've used Lyrica the longest, more than twenty years. I'm on my third or fourth doctor; they move or retire. I've weathered several protocall  changes by the federal government, essentially defining which kind of doctor can prescribe different tiers of drugs.

My drug history follows me around fairly well. However, the breakdowns are awful, most especially to me. Three nights ago I looked into the pill cup and saw the ubiquitous statin, some vitamins, and no Lyrica. I inquired, and was told it had been ordered only for thirty days, then they would take me "off" and see how I did. None of this had been discussed with me, the verbal patient who understands, or the prescribing doctor.

Nothing I could do at ten at night, so I closed my eyes and hoped for sleep. I've done withdrawal in the past of narcotic pain meds. It bascially involves one sleepless night and life's the same thereafter. Of course, I hadn't taken the narcotic for twenty years. 

I fell asleep straightaway. When I woke it was not morning and I was not raring to go. It as an hour to midnight, my back was in full spasm and I lay in a pool of cold sweat. That was my night, doze, wake, feel my back in motion, sweat, wet pillow, wet sheets.

The last time I woke was 6:30 ish. I sat up and slid to the edge of the bed, unaware the bed pad and sheet came too. I came to the edge of the bed, then over, like over a vanishing edge. I held the bed rail all the way, and and sat down with (I hope) a gentle thump. Nothing hurt more or less than before and my  back kept on grinding.

No harm, no foul, but what to do now? My roommate, a light sleeper was awake, but neither could reach the call button. Carole commenced pounding the wall and yelling. I scooted across the floor and found my New Balance. Let me tell you the kind of noise that comes from the heel of a NB, slammed to the floor. And it still took three or four minutes before five people came through the door, simultaneously!

I waited for them to check me over and put me back to bed.
Then it was my turn to tell them their job. The arogance of checking nothing, telling the patient nothing. I was assured it woulel be resolved before the day's bedtime. "I have a bridge in Brooklyn" I said, to almost every "promise".

Knowing the resolution was days away, I called Laura to sneak in my private bottle of Lyrica. She did a wonderful job, in her best underhand, duplicitously producing them among a pocketfull of absolute trash.  And I was right. No fix Monday, also no fix Tuesday. I'm promised tonight. We'll see.

In the other meantime, Carol's son sent us flowers. No one can believe I've been here mostly on my back in bed for ten weeks. So, it can be done!


And Laura and Kamaria visited, with a gnome. Handsome fella.


53 comments:

  1. Jesus!! I hate this country's lack of compassion and so called health care. DAMN, Good thing you are feisty, you would be gone otherwise. Of course this should not be happening to you. I am so pissed off right now!

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  2. All too typical of modern medicine practices...so bothered about 'addiction' protocols - yet another box to tick - they would rather their patient suffered.
    Good for Laura. It will be the file in the cake next.

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  3. I become ever-more furious at those who are supposedly responsible for your care. While I am quite aware that this accomplishes nothing, I can't help but feel so very upset at the way your needs (let's not even bother to talk about your comforts) are "being met." Which is to say, not being met.

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  4. Holy smokes, Joanne! I am so sorry for all you are going through. That is just awful!!! Thank goodness for Laura. I hope your hospital staff get on the ball soon. I'm wondering if the staff is struggling with COVID issues since I know it's on the rise in your area too.

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  5. I'm so sorry for what you're going through right now. I hope it gets better soon.

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  6. I visit you in spirit every day.

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  7. I will end what has been one long whining complaint with an overview of the problems here. i do see a lot from flat on my back.

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  8. Ten weeks!!! That is awful!!
    This body is your body and you have the right to know what they are doing with it!!!!
    Sending a big carful hug and LOADS of hope! Xxxx

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  9. Is there some kind of governing body over the hospital/staff to whom you can lay a formal complaint about being taken off your prescription without discussion or consent? I would think that is some kind of professional misconduct.

    Glad Laura was able to smuggle in your emergency stash. Cute gnome, too! May he help to brighten your day!

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  10. This makes me so furious for you, and afraid for myself if I am ever in your situation. Grrrrrrrrrr.

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  11. This is terrible, beyond belief in fact. It reads like something right out of Kafka.

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  12. I think these places just prefer to think all the patients are senile and treat them so. Good thing you had your own supply and Laura brought them to you but I wonder what they think that you aren't writhing in pain? That you don't really need it after all and so are dragging their feet in reinstating your med? How much longer are you going to have to be there?

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  13. Your situation only grows more appalling...I am so sorry.

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  14. Commiserations you poor dear. You are going through a rough spell. Hope the gnome goes some way to cheering you up.

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  15. Ask for the Nursing Supervisor. There is a number on a notice in the hall and your admissions papers for the state # to contact about mistreatment in facilities. Time to call. That's horrid. Most facilities are run by the head nurse. The doc only comes once a week to sign off and rubber stamp any orders. The facility doesn't want to pay for meds they don't have to, so they can try to make some sort of profit from each person's Medicare drug benefit. The drug rules all change when its provided via the facility. I saw this several times with patients admitted to facilities and stay "too long". Your slide to the floor counts as an official fall, which doesn't look great to the facility. You might want to call the doc directly at his office, because he's not going to come see you each day. It's sad. I'm sorry you're having to go through this. Linda in Kansas

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  16. Glad you didn't break anything when you fell. How frustrating for you to not be listened to and your care not discussed with you. I am glad you speak up for yourself and you should keep doing it loud and clear! Hope you can get out soon, Joanne!

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  17. Good on Laura. We all need a Laura.

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  18. Hari OM
    Oh good grief... Joanne, I was so hoping there would be a post about your getting up on your pins and making proper progress. I echo all the wails of angst in previous comments - and again lament not being able to do a bloody thing for you from here. Oh for the ever-pined magic wand... Stay strong dear lady! (And YAY for Laura...) YAM xx

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  19. Ren weeks is a very long time. I hope some one gets things together and some recovery happens.

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  20. The arrogance of the hospital decision makers (re. Lyrica needs) and lack of care is astounding. When you get out of this place and back on your feet, you must work with an attorney and write a detailed health care proxy with directives. When health care facilities see you have a custom document and an attorney, both facilities and carers will be more attentive and cautious when providing care. This is a sad state of affairs and an unfortunate reality. I agree with TS, above.

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  21. Sorry you're going through all this. However, you have enough backbone to be a real fly in the ointment and hold everyone accountable.

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  22. If ever there was anything that so perfectly illustrates our health care crisis, it is this story right here. I am horrified, Joanne.

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  23. Lovely flowers and the gnome is a handsome fellow. I do hope by now that your lyrica is prescribed and given to you. My back porch neighbour is also on it and when she runs out the discomfort level is very loud. I can't begin to imagine how that must feel, having your back rubbing like two washboards and hope you are much more comfortable now. I am so sorry that different medical departments don't listen to each other or to you.

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  24. Lyrica didn't agree with me - but I am so glad that you had/have access to it. And, as for your ongoing treatment? Hiss and spit is the politest thing I can bring myself to say.

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    1. This is appalling. I'm so angry and frustrated.

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  25. I hope it all gets better soon Joanne and they don't make decisions without you again.

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  26. For it to happen at all is wrong. For it not to be corrected for days is inexcusable.

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  27. BTW, I saw gnomes like that yesterday day and was tempted.

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  28. The lack of compassion in decisions like that is shocking, especially given that everyone there chose to enter a "caring" profession. I'm so sorry you are having to go through all of this, Joanne. It's terrible. The comments above by Drum Major and Susan make a lot of sense to me, and regarding those responsible for these acts, I hope you can hold their feet to the fire when you get out of there. Thank goodness for Laura and her smuggling skills. Sending you warm hugs and extra resolve to help deal with this depressing situation, my friend.

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  29. OMG! Ten weeks is horrific! I have to say I know from experience what your pain is like. I broke my back in two places and also have Fibromyalgia and osteoarthritis. I was on Lyrica for a while, but am not taking it now. I'm grateful for Laura being there to help you. I agree that you should contact your doctor directly, as well as filing a complaint with the proper authorities about your fall. Unconscionable neglect.

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  30. Oh my. I pray the pills got re-prescribed quickly though it sounds like everything there is at a snail’s pace.

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  31. So typical of so many - deciding what's best for you without discussion or comment. I hope the problem has been resolved and your pain is bearable now.

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  32. I hope you sort out the Lyrica problem. It's no joke living with continuous and grinding pain. Outrageous that no one bothered to talk to you about taking you off Lyrica.

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  33. It is infuriating when they decide what is best for us without asking whether it is bet or explaining why they think it's best. Good luck. The flowers are gorgeous. I like the snowflake on the gnome's hat.

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  34. This makes me feel so angry and helpless for you, Joanne. Thankfully you had some Lyrica stashed. You shouldn't have needed to use it. The lack of communication and compassion boggles my mind. :(

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  35. I am outraged for you. Inflicting such pain and distress on the powerless. I hate them for you. Insensitive sub-humans. May a 1000 camels offload on their pathetic hovels.

    There, I feel better now.

    Like you, I stash serious pain killers just in case.

    XO
    WWW

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  36. I am so sorry about this, and I wish I could come and read the riot act to help you. I do check in every day, several times, to find out how you are. I'm so mad about this.....

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  37. I hope all of this gets resolved in the best way possible for you, Joanne. I am sorry that you are having to deal with this crap.

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  38. Replies
    1. Amen and I second that thought!!! I hate to think what Joanne would be going through if not for Laura.

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  39. I enjoyed the mental picture of your rapping on the floor with the shoe, but I was appalled to read about the chain of events that brought that about. So sorry you are going through this!

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  40. After reading this I googled Lyrica, and the first thing I found was that going off it cold turkey was a really really bad idea. Bad results could be lasting, and at best beyond miserable. Obviously, whoever thought it was a good idea to try you out without it is guilty of incompetence, if not malpractice. I hope you do make a complaint about this place and put that in along with the rest. And dearly hope you can get out soon!

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  41. One of the sweet things about making a complaint is that they might notice that old ladies are not invisible to everyone!

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  42. Good God, the arrogance and ignorance of these people. What made them think they needed to see how you would do off a drug you've been on for decades. I really hate the medical establishment.

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  43. What a terrible night for you. I don't understand the lack of communicating with you. Also, while I don't know a thing about Lyrica, cold turkey as getting off meds doesn't sound right to me. Wishing you all the best.

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  44. Oh Joanne, what a dread! I feel so much with you, and your poor back and bones.
    The only highlight seems to be the help of Laura - you are lucky that she could bring those pills to you, and you were lucky to have still a few in your house.
    What I absolutely hate (and fear) are nurses and doctors not listening and not explaining - till now I can choose whom I have to do with, but of course in a hospital you can't.
    Is there a light in the sky foretelling you when you can leave?

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  45. Dear Joanne, I read your last two postings and admit to feeling anger and some hopelessness. How you maintain yourself in the midst of such incompetency floors me. And why, is there so much confusion among the staff--the doctors, the therapists, the etc., etc., etc., WHY? While I am praying for you, I'm also thinking of myself and hoping that I'll never have to learn what you are learning. And all this in the midst of great pain. You are, what my mom used to call--"a real trooper!" Peace.

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  46. If you provide your address at the hospital, I'd like to send you a Christmas card. Cheerful holiday cards can only work to lift the spirits. Others might want to send you a card as well. Thinking of you!

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  47. I think you have a good lawsuit. I don't run for lawyers first thing, but to take a long-time Lyrica user off Lyrica just like that could actually harm you severely. The nerve. I'd like to say a BAD WORD or two or dozen. You are in my prayers.

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  48. Thank goodness for Laura and her being able to sneak in your 'home stash' of meds.
    -thinking of you & hoping you'll be able to be home soon. xx

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  49. I was just checking in, Joanne, and sorry to hear you haven't been well. Arrogance is the right word-wow. If Laura is bringing it in, though, and they don't know, won't they think you're doing fine without it and pat themselves on the back? Thinking of you and hope this gets resolved soon for your sake

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  50. Just checking in to say you're being thought of and I am hoping you're doing better than before. Are you receiving any better care?? Did you call your dr.? If you're unable to post, can you get Laura to do it so we know how you're doing??? Hugs and missing you.

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