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Monday, February 5, 2018

Against the force


I know folks who have no drug regimen. I know those who take far more drugs a day than I do. I take six.

Synthroid—my thyroid crapped out years ago. A specialist follows the problem, does a fine job.

Simvistatin—I think every person over a certain age takes this drug, or one like it. We are the giant pool feeding the statistics for heart doctors united against strokes and heart attacks.

Diovan—Since before the stroke, I’ve taken a blood pressure med. The AMA or someone continues to lower the bar. In the beginning my doctor tried kind after kind of BP medication, and they turned my world around. Imagine dreaming you must make order of a chaotic warehouse that will be invaded by Black Friday type customers at 8 a.m., waking up in the dream, stark naked, to a screaming mass breaking down the door. That was the alpha blocker dream. Never mind the beta, etc. Unsettling dreams nightly. I yelled at my PC, she was throwing spaghetti against the wall to see what would stick. She slammed shut the chart (olden days) and icily said “Would you like a specialist?” My heart doctor is a great guy. Every doctor weighs you and takes blood pressure now. It’s part of the system. Last week my blood pressure was 90/60. “Wonderful!” said the tech. Patient said nothing. I worked hard to get here.

Lyrica—Fibromyalgia. It means your muscles hurt. Nerves are responsible. All the nerves in my spine, that has a broken vertebrae, a cadaver bone fusion and a long list of crushed discs, scream. Fibro is a mean one. No cure, just control. That’s decent, though the cost is obscene. Insurance! I’m getting to that.


Keppra—anti-seizure. This is my second newest bit of drug protocol. Doctors in the brain injury business are totally against seizures, and order Keppra. When I began recirculating among my real doctors, my old neurologist, from the stroke days, immediately cut the Keppra dose in half and ordered an EEG and a CT scan to see if I needed it at all. We both thought I was asymptomatic. I passed both. But, the neurologist quit the practice and went to a research university to do his Alzheimer research. His replacement raised my hackles by asking me to ask my other doctors why they were or were not doing various protocols. Not my job. I have no credentials to relay the information. I found a new neurologist. Like many of my doctors, the one I related to is in a different major hospital system here. They don’t share information with each other. If I were in charge, I’d bang heads together and solve that easy problem. Instead, I still must take Keppra. It promotes unspeakable dreams. The warnings include suicide, and if I can’t get all these guys on the same page, I may threaten it. Last EEG is Wednesday. The new neurologist intimated his next step is to read the EEG and tell me how to quit Keppra.

Belbuca—For years before the fractured skull, I used prescription NSAIDS to handle the residual pain and keep on walking. I saw a pain doctor on and off, to no avail. Narcotics literally wipe me out for hours; I wake up and can function on the residual four hours of pain relief. The pain fellow’s surgical procedure was a total bust. The NSAIDS were a contributor to the bleed from the skull fracture. I quit them. June, July, August at home, I was just a mess of pain, and finally went again to the pain doctor, with little hope. He offered a new sort of opiod. It had to go through a pre-authorization, rejection, doctor certification procedure. That took about five days. This is some authority’s scheme to end the opiod crisis in this country. The initial script was filled three times. New script, the procedure begins again. I did not know the preauthorization  began again, or I would have been sure it began sooner. My insurance company wants to override Belbuca with a four hour skin patch. Adhesive removes my skin; I would be an open wound using it. Belbuca dissolves in my cheek, in the time it takes me to take care of the cat and make breakfast. I am up to the doctor certification part of the giant dance on my new Belbuca script. Today is my third day without a pain med. I would like to stand in the road and scream What the Fuck is Wrong with you Fools?

I played cards today. I warned them I was pretty crabby, stand aside. Nancy and I beat the boys roundly!


Soon I can take some Lyrica and sleep for eight hours, until my spine wakes me to get up tomorrow. Then another sixteen hours of tears on my eyelashes. When I hurt this bad, I cannot stop them. Made it hard to see the cards, but I prevailed.



35 comments:

  1. Aw, Joanne. Living with pain is no fun at all. I'm wish I could do something to make you feel better. Thankfully you are a strong soldier and you keep on top of everything. You amaze me and I'm sure many of your other readers. It really is a crap shoot with medicines. I've been on and off so many myself. I do my best not to add to the ones I need to take daily. I hope you have a nice sleep and that your pain won't be so bad in the morning.

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  2. "They don’t share information with each other." that seems so wrong to me, but it goes on everywhere. Yet here, just as there, a national database is being developed to keep track of opioid pain relief users to stop the "doctor shopping" where people go to multiple doctors for prescriptions. Why can't the same database be used for those on legitimate drug schedules?
    Until just recently pain killers containing codeine were available over the counter here, which has led to the same opioid problem, then for a couple of months we had to show ID to get any, now that's changed again and we need a doctor's prescription. I take them very rarely, for migraines, maybe one a day about twice a year, so having to go to the doctor is going to be annoying for me, by the time I get there and have him write the prescription, the migraine will be full blown and too late to take the tablets.

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  3. Oh you poor dear. That's a lot of stuff going on. I hope you get that one bit sorted soon.

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  4. I haven't yet reached the point of needing to use any type of super strong pain medication, but I have arthritis in my spine, hands, and knees, so it is a possibility at some point that I may need to. There are so many people suffering as they jump through the hoops that they must before they can get their prescriptions for pain meds filled. The last time I was at the pain management doctor's office for steroid shots, there was a steady stream of suffering people, some barely able to walk, some unable to walk, but using wheelchairs, some barely even able to sit up in their wheel chairs as they were being pushed into the doctor's office. I believe I overheard one of them saying that they had to have a written prescription signed by the doctor to get refills of their medication. Most of those suffering were older people, having to go through all kinds of hell just to get their prescriptions filled. You could tell how much pain they were in as they waited as the office assistant got the info for their prescriptions. The government and insurance companies just keep making it harder and harder for people who happen to have debilitating medical conditions to get any type of relief for severe pain. I wish some of the people passing the laws without truly considering the hardship they are inflicting on people with severe pain problems would consider that, There but for the grace of God...

    Meanwhile, here in the state of Missouri, lawmakers are now trying to figure out what to do about drug addicts who are using a well known anti-diarrhea OTC medicine to have similar effects as opioid drugs. They must take about 200 times the regular dose to get high. I guess they will never again worry about needing to find a bathroom after taking that much anti diarrhea med. What a world we live in.

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    1. Thanks for commenting, Susie. Yes, it is crazy. At cards today I could neither shuffle nor deal. The guys said we won because they gave up all the good cards. Ha.

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  5. Well at least you can get some sleep.....but eight hours of relief out of 24 isn't all that much is it. Hopefully one of these doctors can get you some peace from the pain. Hopeful, helpful, healing thoughts headed your way.

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  6. gosh dern Ms Joanne, you sound in worse shape than me and I would have myself put to sleep if I was a dog! I quit gabapentin and the burning sensations and tingling came back but it is worth it. I was acting a little crazier than usual and I gained 30 lbs I didn't need taking the stuff. Less is more. I am trying to get the VA doctors to lower my blood pressure meds as well! Battle On and remember each day is a present!

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  7. No words can ease constant pain. I take 5 pills a day, but for very different ills. Have you considered cannabis? I believe it has all sorts of analgesic qualities.

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  8. Hari OM
    I remember this kind of pain. Now there's just a constant ache. I take nothing. My body doesn't deal with drugs beyond aspirin. Sending some POTP darling. YAM xx

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  9. From personal experience,statins cause legs pain of varying degrees.

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  10. Oh Joanne. Chronic pain is wearying. I'm so sorry you've had so many hoops to jump through just to get what you need (or not get, as it turns out). Drug side- effects are some of the scariest things out there. I've been wrestling with whether I want to do a post about that very subject. -Jenn

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  11. Why is it that medical professionals don’t communicate with each other? It’s the same here. Infuriating! How is this good health care?

    I pray there are less tears today! Take care.

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  12. "Not my job. I have no credentials to relay the information." Quite right! I hate when they expect the patient to do their work.

    Chronic pain is the worst. My mother used morphine patches for the last 20 years of her life. She said the only time she wasn't in pain was at the orchestra. I question why the medical profession has put so little time and money into pain management research. Big Pharma's opioids were never the answer.

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  13. I agree with Cro. Is medical marijuana legal in Ohio?

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  14. Sending positive thoughts your way.

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  15. Joanne, I am so sorry. Pain is so debilitating. I too take handfuls of meds. I also have nightly nightmares. I wonder how Canibinol oil with thc would work for you? Don't know about your state laws but I hear it works wonders taken under the tongue. My sister is trying to get it. Has to order from CA or CO it seems.

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  16. I'm jumping on the marijuana bandwagon - not the cure-all, but helpful.

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  17. I went through the fibro mill for some years with no relief, then a brighter-than-average doc figured out that it was delayed reaction food allergy to red meat. Haven't eaten any mammal for 4 years, and have much less pain. From what I understand, medical cannabis not only helps with the pain but causes one to have no dreams. Just a thought....

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  18. I take one med, levothyroxine (the generic synthroid) for the same reason and the only reason I take that is because if I don't it feels like I have a lump in my throat since I never had any symptoms. the doctors would have me take meds for osteoporosis (and I did until I researched how they work and the side effects and then I quit taking it and now refuse) and a statin for cholesterol which I also refuse (last year's visit to the cardiologist showed no sign of blockage). for most of the modern medical community it's CYA (cover your ass) as opposed to getting to know the patient and practicing medicine. perhaps you should ask for a copy of your records and tests and results before you leave every visit to a doctor and cart the info with you to the next one. so sorry they are screwing around with the pain management.

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    1. I so agree with the CYA aspect of modern medicine. I have stage III kidney disease, also, and my PC referred me to a specialist. First visit several years ago he said "Why are you here?" I told him my PC was CYA; I was there because of the heirs and assigns. He howled. I see him once a year and we chat for 15 minutes; see ya next year.

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  19. These are a lot of drugs, Joanne - but when you need them you have to swallow them. Till now I do not use a single pill - but: as I say: if I had to I would (eventually). I wish you from all my heart that they do help you!

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  20. I am so sorry dear you. I understand. A little pain here and Tylenol keeps it under control. 6 meds and two sprays here. Now they found two more things wrong, and I bet I get two more pills. LOL Hugs at ya.

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  21. My grandson has fibromyalgia too = it is a horrible condition so you have my sympathies.

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  22. Dear Joanne, only once in my lifetime--for four months--did I have pain that I'd label a "10." You have it all the time and I feel so much sympathy for you and understand your feelings toward the medical profession. You'd think that the country that put a man on the moon could figure out how to keep all doctors in the loop. I wonder how much of their different opinions comes from their own arrogance. Peace.

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  23. Chronic pain of any nature is very hard. Our daughter has had fibro since she was 16. It's invisible to doctors and everyone else but the effect on the person who has it is tremendous. And regular doctors often do not know how to help. Do you have the option to see a pain specialist? I hope you get your medication today with no further delays.

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    1. I went back to the pain doc last September. He's been a failure up to now, but he prescribed Belbuca and it's a wonder drug for me. I've been on it since then. However, it's a new year and all the drug plans want all their protocols refulfilled. So, here we go again with the request, the rejection, my doctor making a new request and the script will be filled. It's a regular dance. It takes up to three weeks. I'm at day five. The insanity of this is: it is not addictive. I am not in withdrawal. I am not in the pharmacy with a gun demanding their entire inventory. I am just in pain, and waiting.

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  24. I am in awe of your spirit. This blog is a tribute to the best in humanity. Best wishes.

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  25. Keep on keeping on Joanne. I am lucky to not take any drugs. But then I haven't seen a doctor for 10 years so that is probably why!

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  26. Thanks for explaining these meds. I would rather read your opinion than suffer through those constant commercials during the evening news. The news is bad enough. I believe drug prices would drop if those TV drug ads were banned.
    Wishing you better days.

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    1. Yes, commercials should be banned. I've never seen one do an honest job of the side effects.
      I'll get better; thanks.

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  27. You have my sympathy , that really is a horrendous regime.

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  28. I hate to hear that you are in so much pain.

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  29. I take four different medications. Thank goodness I am mostly healthy.

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