Thursday, April 10, 2025

My solution

I've been diagnosed with chronic pain for twenty odd years. It began small and then kept adding on through the years. 

First that crushed disc at C3 and a degenerated hip. Had those repaired. Then lumbar stenosis and L1 crushed in a stupid accident. Physical therapy and a brace for a long time.

Then the litany of minor things, like rheumatoid and osteoarthritis. No cure there. Left shoulder replacement. Then a tibia fracture, couple of years later my femur. Add to all this, acquired leg length discrepancy, now about an inch. Every step hurts my back.

I consumed a lot of ibuprophen and went to physical therapy. Eventually I cycled through rheumatology and on to pain management. Pain management began about ten years ago.

I started with Lyrica and then a "mild" opiod. I researched the bejammers out of the latter before I agreed. I was prescribed Belbuca, "the drug we prescribe for withdrawal from addictive opiods".

For the first time in a long time my back was manageable, my arms, legs and hands quit hurting. I took up weaving again because I could catch and throw a shuttle. Life was just fine.

I moved from my township in Summit County in 2022, to this senior complex in Portage County. I drove the twenty or so minutes back to my Summit County doctors until I decided the car was becoming too expensive. I traded out all my old doctors for doctors I could access from my new residence.

My first pain problem was that not one of the new doctors would prescribe Lyrica. Either they were not authorized or just would not. I was referred to at least four new pain practitioners, none of whom prescribed pain medications. I could explain their reasoning but don't care to. It basically came down to what I call "old people medicine."

And I no longer have Belbuca to keep me moving. I was still seeing my old pain management practice, but the price of Belbuca was rising exponentially. By 2023 my co-pay was $300 a month. Way out of my ballpark. The pain folks had no alternative. So, I quit.

It wasn't the worst thing I've ever been through, but it did remind me of all the reasons I always refused prescribed pain meds. If you take them you must withdraw if you stop. So, I spent a sleepless week. But that was a couple of years ago.

I went back to my ibuprophen habit. 400 mg in the morning, 400 at night. When doctors complained and had no alternative I said "Deal with it". The same thing I told my primary years ago, when she thought I should quit butter. "I eat butter. Deal with it."

Sadly, my self prescribed doseage no longer works. I seldom sleep the night. I have not seriously thrown a shuttle in more than six months. I've switched from my walker to my rollator so I can sit down on my way to anywhere.

When I was young I occasionally heard my father say "I've dug a hole and pulled it in behind me." I feel like I've done that myself, and I like it less and less. 

I've arranged to get a new shoe lift to ease walking a bit. I've had them in the past and hated how inefficient they are. But my daughter located a supplier who purports to make a more flexible lift, so I'll give it a try.

And, I've make an appointment to see a new rheumatologist. Maybe I'll find some help. That appointment isn't until July. In the meantime, I'm avoiding typing. I'm looking forward to being done with this confession. My hands hurt, my arms, my shoulders, my back. It's such bullshit.

Long story short, I'm mostly off posting. I'm still at the head of the activist rolls, letting my fellow senior anarchists know what boycott is in effect and what issues need letters. Would you believe my MAGA state government is trying to move libraries from independent funding to a line item in the state budget. Bastards. When the federal funds to Ohio are gone so is Peninsula's library.

All is not gloom, however. It is spring, snow nothwithstanding. The daffs are up, the birds are back. From a window I can see through at supper there are a lot of hawks riding the air currents. 

On my way to breakfast I generally stop and rest at the big windows overlooking a court yard. It's where I can see the white cat, Happy, if he's soaking up rays in his window. But this week a hawk landed on the retaining wall outside Happy's window.

A plethora of sparrows live in the row of arborvitae past the wall. I've seen several hundred shoot out of the row of arborvitae, like a curtain of birds. Suddenly the hawk dived into the greenery and came out with his breakfast. I think it's a Coopers Hawk. He's been here before and a hall mate took this picture.


 


38 comments:

  1. That's a lovely photo of the hawk. My mum had awful arthritis and she was in a lot of pain. Eventually she ended up on morphine for the pain and it worked well. It's shocking that in a country of drug addicts, many of those addicts who were given prescriptions for oxy, even when Purdue knew how addictive it was, that you can't find a doctor who will treat your pain ( those same doctors who knowingly helped to produce the opiod crisis). There is still way too much discrimination against older people and women, when it comes to treating pain.

    ReplyDelete
  2. Joanne, I'm glad you let us know what is going on with you. I have a friend who has had similar difficulties (won't go into them, but the shoulder problems, lumbar stenosis, surgery, and leg length with shoe lift continue to cause back pain). Can't imagine why they can't give you whatever you need to stop the pain - at our age addiction isn't really so much an issue as quality of life left. I'm not one to talk as I don't take anything but Tylenol when needed but... would medical CBD or cannabis help?

    ReplyDelete
  3. Hari Om
    Ugh. You know that I know something of what you're experiencing. I do hope that specialist visit will bring something forth. Meanwhile, do what you need to do. We'll wait to hear... YAM xx

    ReplyDelete
  4. Joanne, so sorry to hear about your numerous health issues.

    You have brought such joy and comfort to me over the many years I have followed you. You have lived an amazing life.

    Best wishes, Sandra

    ReplyDelete
  5. Joanne it broke my heart reading this, and I can understand why you're done posting for the most part, but I'm going to just keep wishin' & hopin' you get loads better and want to resume. You're one of my very favrorite bloggers and a wonderful writer. I wonder about you everyday and will continue doing so. And yes, our country--well the various govts, state and Federal--a friggin' shitshow.

    ReplyDelete
  6. So sorry to hear this. It's so hard to keep on. But you'll continue in my thoughts even if blogging doesn't happen.

    ReplyDelete
  7. Your hawk is magnificent. It infuriates me when doctors refuse to listen to us. We are the ones living in our bodies and experiencing what we are feeling. I wish you the best.

    ReplyDelete
  8. Oh and butter is better for you than oleo.

    ReplyDelete
  9. I'm so sorry your pain is not being treated properly, Joanne. And partly because of cost. That should never be. Thank you for updating us. I hope your July appointment brings something useful to you. In the meantime, I hope the shoe lift is helpful. I suppose it will take a while to know, on that front. Your feisty approach to life is inspiring to me. Is there any chance of calling the rheumatologist back and telling them some details as you've told us, and asking for a closer appointment? Nothing ventured, nothing gained, as they say? Please take care of yourself, my friend. xx

    ReplyDelete
  10. Oh Joanne. I am sorry. Chronic pain is a soul and life sucker.
    I really, really hope that your new doctor is able to help. Thank you for letting us know and I am sorry about the increased pain your confession caused.

    ReplyDelete
  11. Joanne! I wondered where you had been, I understand! You have been so good at checking in even though pain, your constant horror! I am so sorry to hear that you are not getting the relief you need! I also understand about dumping the car- they are expensive and are little monsters for the environment BUT the place where you live now should have a "short" bus to take you where you want to go. They SHOULD! Your hawk is a beauty- get some hawk energy!!! Demand pain relief! In England heroin is used in small increments for chronic pain...just saying- this country really effed up with Oxxies and now everything is suspect- Pain wins!! I am so sorry to hear this but I am glad you are alive!!!

    ReplyDelete
  12. I'm so sorry that you're going through this and it doesn't sound like you're getting ANY support from the medical community which truly sucks. I too was wondering where you were and hoping you were just too busy to post. Hoping for better things!

    ReplyDelete
  13. Oh Joanne I'm so sorry to hear of your long catalogue of pain and restriction. Your new doctors seem exceedingly unhelpful and unsympathetic. I hope you can get some effective pain relief of some sort. Still, as you say it's spring which is something to lift the spirits.

    ReplyDelete
  14. I am wondering the same as Rian- is medical marijuana legal in your state? I wonder if it would help and also, if you could afford it.
    The way western medicine treats pain is a sin. And we are so, so afraid of addiction, not even thinking of the benefits of the pain relief versus something that at our age is not really a big issue. We have reached a point, I think, where if people are actually "actively dying" the addiction issue becomes moot and whatever drugs are required are given.
    Hell, we are all actively dying, one way or another. Pain affects quality of life far more than a dependence on a substance. It is simply not right nor moral for there to be an answer to chronic pain and then deny it to those who suffer.
    I am so sorry you are having to live like this, Joanne. And yes, I have missed your voice here terribly.

    ReplyDelete
  15. Sorry to hear about all of this for you. It IS surprising how pain mgmt docs don't scribe pain meds. I've had several back shots that have decreased results over many years. Next step is a possible nerve stimulator that's tried for 2 weeks, then implanted if successful. I had an RN continuing ed 6 hour course on med pot. Since they can now split the CBD part away from the hallucinating THC part, I researched it further for my tailbone pain. The thing to is start with low dosings, like 4-20mg, NOT the stupid 1000mg in edible junk. Charlotte's Web has under-the-tongue oil at 17mg for a 1ml dropper. I've taken one--quarter of a dropper to start. That brand is in Colorado and uses US hemp derivatives, not sludge from China. CBD is legal in all states due to a 2018 or so Agriculture law. Keep working with your pain mgmt guys and check out Charlotte's Web. It does have like 0.3% or less of THC in it, but as a retired nurse, I'm not being asked for any drug samples. Elderlings should be able to relieve pain more easily. (Can't take NSAIDS anymore, so that's limited my choices too.) Linda in Kansas

    ReplyDelete
  16. You've been through and are going through so much, but it is good of you to let us know in some detail. I hope you can continue to post a little from time to time, but I understand that it is very difficult for you.

    ReplyDelete
  17. I did a bit of research for you on Mark Cubans Cost plus Drugs website. Your expensive drug Belbucan is not available now but you can request to be notified when it is. If you are interested, go to costplusdrugs com, or Google mark Cuban's website. Prices there are very reasonable, and if you haven't researched there yet, it might be worth the effort.

    ReplyDelete
  18. It is so nice to see you here Joanne.
    Chronic pain is terrible. The medical community should help. Unfortunately, they usually do not. When I was taking my late friend to the hospital for chemo infusions, she experienced great pain too. CBD helped her manage pain. She could not tell the docs because they did not support CBD use. Plus, she thought they would not treat her cancer if they knew she was using CBD. The system is truly broken. Other countries use CBD, why can't the US?

    ReplyDelete
  19. I'm so sorry to hear about your pain and lack of help with medications. I hope the new doctor/clinic can help. It is so unfair when it affects your quality of life as much as this is affecting yours.
    I live in Ohio too. I am livid, I am angry. Our libraries have been funded by the same formula since 1983. Now they are restoring the fund name - like it's a big deal, but are not using the funding formula. Why? Why? They actually used the formula in January and shared project amounts. Now it's April and they want to rewrite the whole thing.
    AND part of this new funding alignment is that Ohio government was to review the library's holdings- and censor what books and materials they offer. I am just in shock. And angry. And livid.

    ReplyDelete
  20. Why is it everything happen at once. Why does everything hurt at the same time? I've heard of old people's medicine. People will listen to your complaints. we know what it's about. I hope you can find some relief and sing again!

    ReplyDelete
  21. You're a trooper, Joanne! Keep on truckin!

    ReplyDelete
  22. I'm sorry your more recent doctors are such idiots. I gave up on mine. Great photos. I hope you find some help at the July appointment.

    ReplyDelete
  23. I'd wondered how you were...not like you not to be posting...have you thought of using voice activated writing?
    Such a shame such a short move would mean that the meds you need are not available..but it happens here too.
    Echoing Debra's comment..((hugs))

    ReplyDelete
    Replies
    1. I thought the same thing – – perhaps you already have tried it – – these thick and stiff old fingers of mine really appreciate voice-activated writing.
      (however if I’m lazy and don’t proofread, I do end up posting the most ridiculous garbage – – lol)

      Delete
  24. An awful story, Joanne. No one should have to suffer twenty years of chronic pain. The failures in the medical system must drive you crazy.

    ReplyDelete
  25. I'm so sorry to hear about your pain and that the doctors are no help to you. I hope that some of the advice from these comments can help you get the relief you need.
    I am glad that you can still enjoy the birds and nature you see outside.

    ReplyDelete
  26. Ughhh! I feel for you. I'm so sorry you are getting a run around regarding pain relief. Here's hoping the rheumatologist is a good one and gives you some options. Thanks for the hawk picture. I love birds of prey. -Jenn

    ReplyDelete
  27. You are smart and brave and good, Joanne. And I use one of your beautiful dish towels every single day, so I know this to be true.
    ❤️❤️❤️

    ReplyDelete
  28. I’m so sorry you are suffering. As far as “old people medicine” I don’t understand the reluctance to prescribe what’s know to work, surely our “golden years” should be as pleasant as possible. I’ll be thinking of you and hoping relief comes soon.
    Xoxo
    Barbara

    ReplyDelete
  29. That is a long time to be suffering in pain, Joanne. The $300 cost is understandably prohibitive. I hope the new doc provides some help.

    ReplyDelete
  30. I don't understand why they cannot prescribe you something that works and is affordable. Cripes, it's just plainly inhumane. Have you tried CBD? Not smoking it, but the gummies or drops. If you've got to be in pain, maybe get stoned enough not to mind it so much. The munchies might be an issue after a while.

    ReplyDelete
  31. I'm sorry. Pain sucks. Would it be worth it to try to find a way to go back to your previous doctors? Could you possibly travel by uber? Scheduling a ride in advance is less expensive. Is there a senior service that would help you get there?

    Love,
    Janie

    ReplyDelete
  32. Dear Joanne,
    oh what a hard burden!
    Let me hug you (only very tender so that it wouldn't hurt). You are so brave! (Though - as I imagine I know you - you might answer: "I have no alternative".) Damn that they don't prescribe you the painkillers any more.
    Pain sucks, pain makes one so miserable and destroys so much joy. And creativity - you can't weave or walk much or write - horrible.
    When I was young (and then later) I prepared for old-age - but one thing I forgot: pain. I thought of crowfeet, a bit forgetfulness, a little loss of vividness. I honestly forgot about pain.
    I think of you, Joanne, I miss your posts - but much more important is that maybe a wonder happens and you find a medicament that will help to ease the pain! I pray for a good and kind doctor who isn't a fool. I wish you better nights, less pain, more power.
    Your friend Britta

    ReplyDelete
  33. Oh Joanne. Rock, hard spot. You've been through so much and remained strong, determined, and vibrant through it all. I hate this for you. the lack of medicare in this country is appalling. What works is unaffordable because money is god here. thinking of you.

    ReplyDelete
  34. I think the doctors are being unreasonable to not try different pain meds with you, or prescribe what you know works. Maybe your new appointment in July will be a blessing for you, with the right doctor. I have followed your blog for years and always enjoy seeing what you create.

    ReplyDelete
  35. Sending love. Don’t know what else to say.

    ReplyDelete