www.lingeringson.com/2018/02/03/the-appointment/
i hear his footsteps approach the exam room, my breath catches as thoughts race. my pulse quickens, i feel slightly sick…
memories flood past…playing with my children, grandchildren, babies chortling, making music with friends, farming…further back..giving birth, weddings, falling in love, childhood..
all accomplished with some level of pain, the last twenty years with proper treatment. happy and still productive, at sixty now i am in school, volunteering, advocating, caregiving, loving…or was. the change in my life has been head spinning these past few months.
he interrupts my thoughts as he enters. without making eye contact, he announces my medication will again be cut in half. i protest. i can’t spend more time in bed. i like to walk with my cane. to move. moving is important to be healthy.
i remind him i am a caregiver. my son cannot speak or move. who will care for him? for me? what have i done wrong?
he won’t risk his license for a patients function, he says. nothing personal. he shows me a printout. says i’m over a limit that never existed before. that someone, somewhere, says now they know the risk of addiction. after over twenty years of none. liars.
he never took his hand off the door handle. bastard. he grins. buffoon. it will be a transition, he says. fool. death is a transition, i reply, that doesn’t make it a desirable outcome. he quickly disappears, leaving a nurse to pick up the pieces, and hand me my sentence. coward.
as i leave, a protesting patient is escorted out by security. an old man asks what ‘non-opioid treatment’ means for his cancer pain. my chest feels tight.
outside, the addicted continue to die in record numbers. their pain is not physical. the escape they seek is not with any medication i am prescribed, yet this is somehow laid at my feet. the world has lost its collective mind.
Filed under: General Problems
Over the last two years, I have seen the trend: Pain Management taking people off of meds or cutting their doses. I have heard people yelling, crying, or in my case just going with it. Too afraid to argue and be dismissed. I have Arnold Chiari Malformation of the Brain Type 2. I have nerve damage in my neck and back. I have trouble with balance and run into walls, doorways. I fall down, I have hurt myself badly. I have begged for surgery, but my pain management doctor does not feel I would benefit from it. I have taken myself off of the pain meds I was on, afraid it would be done for me instead. Now I take two Norco 10/325 a day. That is it. I don’t sleep. I try to do things, but going to the grocery store puts me in bed for days. I live in Ohio, and we are to have the exchanges for Medical Marijuana ready in September. BUT, if you cannot find a doctor willing to write the script, what good are they? The doctors here are banding together, probably pushed by the pharmaceutical companies. And us? We are caught between them, unable to treat our Chronic Pain and unable to get any real help to get surgery that might give us a better life. I thought about CBD, which is LEGAL in all 50 states. But if your doctor finds out you will be dismissed from Pain Management. WHY?? I am still using CBD, but I am terrified that I will be caught and then blackballed from any Pain Management in my area. The only thing that keeps me going is my older parents. I am all they have to take care of them and they are both in their late 70’s. And my son is 34 but he has been in the military since he left high school and he is a good man. A very good man. But I will not let him sacrifice his future that he has worked so hard for to come back here to take care of all of us. I will do what I have to here to make sure my parents are safe and okay. But I am also so afraid that the time is coming that I will not be able to do it, and I hope that I may find a doctor willing to write a script for MM and then maybe I can stay under the radar of the Feds…who Trump gave permission to so they can once again arrest and send to private corporation prison systems..people who only want to live without terrible pain. No matter what the State you live in says or does in relation to the MM laws. I want off opiates forever. I want my life back. I want to live without Chronic Pain. I want to be regarded as a PERSON. Not an addict. I want my dignity. We all do.
God help us.
Time to quit bitching and start voting.
I don’t think it could be put any better, wonderfully written…. God Help us, I’m also a Chronic Pain Patuent, currently having a pump inside me that I have NO CONTROL over is being drastically tapered to meet the new 90mme. The medication is two times higher than that but this doesn’t go through my system, side effects, zero, UNTIL NOW, there is no physical withdrawal what so ever, the ONLY SIDE EFFECT IS PAIN increasing at a steady rate, activity that I could accomplish is down, being able to partake in my child life, seeing other family and friends on occasion, when they visit ME, is down because it hurts to much to “act fine”.
IMO… your doc is a “pussy”… there is no black/white conversion between oral opiates and intrathecal dosing… there are only guesstimates … and the opiate dosing guidelines only address ORAL DOSING.. most of the idiots that wrote those guidelines/rules… probably don’t even know about implanted pumps and intrathecal dosing. Even the published opiate conversion tables plainly states on their webpage that the conversion is a Published equianalgesic ratios are considered crude estimates at best and therefore it is imperative that careful consideration is given to individualizing the dose of the selected opioid. Dosage titration of the new opioid should be completed slowly and with frequent monitoring.
I am going to have the trial done as soon as I get a final MRI done next week. My pm doctor is going to start w a trial of a non narcotic medication called Prialt. Maybe it is something that would be beneficial to you.
As I remember, Prialt is approved only for pts that are allergic/intolerant to any/all opiates and it is to administered only via implanted pump. Here is the price that is listed on the web:
The cost for Prialt intrathecal solution (25 mcg/mL) is around $3,746 for a supply of 20 milliliters, depending on the pharmacy you visit. Prices are for cash paying customers only and are not valid with insurance plans. Prialt is available as a brand name drug only, a generic version is not yet available. IF a Medtronic pump is being used they come in two sizes 20 ml and 40 ml.. Have you checked with your insurance as to if they will cover and what your copay will be … at max dose.. 20 mls will last 3-4 weeks.. at minimum dose would last 6 months… if it is stable in a pump that long …
The breakdown of my day today. All the tears are pouring out. This is me except I don’t have a cane. One other thing. The reason I get is “it’s for my safety and so this Dr. can sleep better at nite” I was stable! For 3 years the same prescriptopns each month. Before that my primary prescribed the same meds. God Help us!!!
(((hugs))) Holly…yes, God help all of us.
wonderfully said…Heaven help us
Why can’t their precious street addicts “take an aspirin and suck it up”?
Powerful. So true. I remember the ‘hyperalagesia speech’ where they couldn’t look me in the eye. Every three months, wondering if they’d drop me lower, as parts of our life disappeared – chaperoning field trips, eating out, movies, trips, showers, going to the mailbox, as my special needs son’s life got smaller and smaller, too.
Exactly. I’ve tried to tell them the loss of function..my LIFE…hurts me more than the pain now slowly stealing it away. Relationships, the days we can’t live again, are slipping by as I lay here. Such a waste. If only they could understand a caregivers heart, anyone’s heart really. We are real people watching our lives change, not for cause or chance…but at the political whims of a handful. (((hugs)))
OMG! Yes the Hyperalgesia diagnosis..I literally laughed in the Drs. face.
The medical profession is now lower than the used car profession.No offense to anyone. They are afraid to speak up and be there for their patients! It was easy to get you addicted now they all turn into cowards and run when the hard part comes. Most doctors from my experience are slime with no morals.There are a small percentage of good ones. Only worried about their Green Fees and their mistresses. We are on our own everyone. Every man an woman for themselves. Fight the good fight ! Take no prisoners! This has got to change or we are all screwed! I wish you all the very best.
Sorry,,,”Doctors are slime”,,,,,I disagree w/u,,,,,,whilst ,”some,”’ are slime,,,,,not all,,,,and the ,so-called ,”addiction,” u speak of,,,,The addiction rate is noo different then it was 100 years ago,,,,,Now the lieful propaganda would have u believe otherwise,,,,,,Also as adults,,,we can and have said NO,, doc,,,,do not want that medicine…As adults it is our responsibility to be responsible w/our informed consent,,,,,No Doctor is shoving a medicine down any adults throat,,,,Thus as adults,,,,again,,,,we a are responsible for stopping our own medicines ,,,IF,,,, no longer in need of it,,,or IF,,, the physical pain from any medical condition has stopped,,,,The Doctor,the pharma,,,etc has NOTHING TO DO w/this addiction crap,,,,for the addiction rate has remained the same,,,,,The difference is their are sooo many liars out there who lie about opiate MEDICINE FOR FINANCIAL GAIN,,,,,,AND SOME,,,GALUBLE ADULTS BELIEVE THE LIARS,,,,jmo,,,maryw
You are right I read that the addiction rate (speaking of drugs only) that is in the US has always been around 1.3 percent of the population.
I could not say no to the meds! When you cannot move and trapped in bed and life is slipping away….I would take anything if it makes a difference
I should have said dependence not addiction..my bad
I did not say all doctor please reread before you have a heart attack..best regards
And I said,,’if” your physical pain has stopped,,then tell your doc u no-longer need your medicines,,,,maryw
Touché
When a PMD wont look at you in the eyes when he is asking you questions while looking at your medical records seeing 9 degenerated disc in spine, failed fusions, knowing you are in pain, telling you I’m sorry, it’s the law. I can’t give you opioids any more, I’ll let you make your own decision what kind of doctor they are.
My PMD took me off opioid meds that worked, put me on Tylenol #4 and told me that opioid meds are reserved for end of life patients.
How could a PMD live with himself??
I have NO quality of life anymore. The low dose meds help very little when sitting down and don’t even think about getting up and doing something.
I pray to God that He will open the eyes of whom ever is making these decisions allowing us to suffer.
PMD may not know if someone is lying about pain sometimes but with someone like me that has MRI’s showing my spine, he/she knows that I’m not lying. These law makers and PMD’s will have to answer to God on judgement day.
I’m sorry about being bitter but the last 3 1/2 years have been Hell since my meds were changed because of “the law”. as I’ve been told.
We have many PMD’s in this town and none will see me when they look at my records, They all say we are NOT excepting any more patients that require pain meds and you fall into that category.
They also lied to your face. It was not the law.
AMEN,,,,,,,,, u nail it,,,for all of us,,,,,,,and our government continue to commit TORTURE/GENOCIDE onto the chronic MEDICALLY ill,,,and bragss about willfully tortureing us,,maryw