Keep HOPE Alive

Keep HOPE Alive

By Suzanne Stewart.

You never think it will happen to you, until it does. I have been helping others and advocating for them for many years now.  I have been writing for the National Pain Report and in my own blog (tearsoftruth.com) for several years as well. I try to give advice to others to help keep their hope alive.

Suzanne Stewart

I have a mantra: “Hope is a verb, You have to DO something in order to have it”.

Now I have to practice what I have been preaching.

In March 2018, I visited my pain doctor who did the usual random urine test. I was told in April that it showed a positive for PCP and something else (which I can’t remember)

It ended up being a “false positive” but was still charged $300.00, because HE forgot that I was taking a migraine medication that did not show up. He says it shows up sometimes, but not others.

Our relationship has changed. He is noticeably less respectful to me. My PTSD symptoms have worsened. I used to feel a mutual respect between us. I stopped taking some other cancer pain medication that was prescribed to me before I started seeing him in 2015. I felt that he respected me for being able to do that and go through the withdrawals process. My brain did not ever care about the medication, but my body got very sick when I stopped it.

Earlier this month, I had another appointment. Things were pretty “normal” during the visit, but he was kind of “short” and “quick” with me. At the end of the visit, he said “so, we are stopping your Fentanyl patch”. I was stunned because I’ve been on it for 15 years and am taking less now than I was in 2015. I’ve had some semblance of a life with my husband, kids and grandchildren. Now, he is going to stop it?

He told me that I was “probably not getting more than 30% of the medication anyways because I’m not “fat” or “heavy enough”. That the fentanyl patch works better on “fat/heavy people” or “people with more body fat than I have”.” I questioned him, but I knew enough not to question him too much. I did not want to make the person that I depend on to have some kind of life at all, angry with me.

My husband brought the empty bottle of my Migraine medicine to show him that I did have an 8-month old script and recently got a new refill. It was not showing up in the MAPS and my husband asked him if we should ask the pharmacy to make sure it is in that system? He told us that “they don’t like if you know too much, it’s best not to say anything”. What the heck is that all about?  I’ve always found it better to be knowledgeable in my own treatment and healthcare. But this is not the case today, I guess?

All I wanted to do is cry and be hysterical for a few moments with my husband. I heard the doctor tell me that he was taking away my patch and that I could take a different extended release medication “MS Contin”. But, I told him that I am unable to take that medication because I have Gastroparesis and even before I was diagnosed with GP, I could not take that medication because it made me sick, violently ill. T

That was the only choice I had and he gave me “one more month to be psychologically ready” but my dose was lowered and spread out for another full day. In one month I will be taken off of my patch after 15 years, with no tapering and nothing that matches the strength and pain lowering levels of what has worked for me for so long.

I live in Michigan and can’t find any “law” that says people taking Fentanyl for chronic pain must stop.

As my kind-hearted specialist physician of 15 years told me yesterday, “unfortunately you and people like you are collateral damage to the hysteria taking place right now”. I guess now it is up to me to see if I am able to follow any of the advice that I’ve been giving to others in this same predicament? Will I have another heart attack or another stroke because the legislators don’t care about me as an individual?  Will I live to see my granddaughters and new grandson’s lives evolve or will I be a statistic?

I guess only time will tell and all I can do is try to “keep hope alive”.

I do know this—things have to change.

We are being left behind.

Suzanne Stewart Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient health advocate, support group leader & Mentor. She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation. The statements and opinions that she provides here are her own and should not be taken as the stance, position or viewpoint of the U.S. Pain Foundation. For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth. You can follow her here: TearsofTruth.com

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Authored by: Suzanne Stewart

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Jim Moulton

I feel very bad for you, I have had my share of bad docs, I tried fentanyl patches once, just did not work for me, but everyone is different. I can’t take ms contin either, makes me sick.
I will pray for you, sorry you have to fight this.
Jim

Julian Phillips, I am thinking and praying for you. I pray that you will not be affected as badly as you think you will be. I was tapered from having 100MCG/hr every 48 hours down to zero in the space of 2 weeks. I can only pray that like me you will get lucky and have no ill effects. It is just insane as well as inhumane that the very Doctors who are supposed to do us no harm are allowed to get away with treating us like this. Love you sweaty.

Alessio Ventura

Things have gone absolutely crazy. I have had 20 open surgeries since 2010, including 3 failed left shoulder replacements and 4 failed right shoulder replacements with sepsis to boot. I had two pars fractures at L5 which nearly paralyzed me, so they inserted a cage, which failed within 5 years, requiring yet another spine surgery, after which I developed an infection. I have a shattered right elbow, with radial head removed, and my entire body is now full of scar tissue and arthritis. To make matters worse, my most recent pain clinic cut my pain meds by 50% due to new FL laws, taking me from 30mg OCodone to 15mg and from 75mcg fentanyl patch to 25mcg. This not only put me into sickening withdrawal, but it also caused my pain to flair up substantially to the point that my blood pressure is now over 180, often 200/112, and my primary care docs can’t get it to go down. I complained to the docs but they said, sorry, so, I just have to suffer through it.

After that, I was asked by my employer to travel. I would be away from home long enough that my most recent reduced medcine would exhaust a week before I was to return. I asked for an early refil so I would not fave withdrawal again while away on business, and they approved it. However, on the drive home from the doc, I called the pharmacy, and they had not yet received the escripts. Since it was a Friday afternoon and I was scheduled to leave on Monday, I called the docs office a couple of times concerned there was a routing error, because it had happened before.

Well, on my second call, the doc’s office manager decided to terminate me from the practice, claiming I was calling too much, and I had expressed too much displeasure on their portal when they had cut me by 50%.

Now, I have no pain doc, and I doubt a new one will pick me up. They. Have basically terminated me for calling too much to query on scripts, for expressing displeasure at the drastic cuts, and for requesting early refills multiple times because I am an executive and I travel frequently.

I have sent so many letters to state and federal reps about the disaster that is occurring in pain treatment because clearly the government is kicking the pain patient to the curb because of opioid deaths related to illegal use, not prescription use. So conflated data, mixing deaths from illicit use (the clear majority) and deaths from valid scripts (a small minority by comparison), is causing hell on earth for pain patients.

Suzanne I’m so very sorry to hear of this. Bless your heart. You and your family will definitely be in my constant prayers for miracles. For such a tragic, needless, inhumane story on behalf of your cowardly physician, you wrote it so very eloquently. Indeed you have a talent and it’s not hard to see a heart as big as your talent. I live in constant fear, what if I’m next? Yes like everyone else I’ve been tapered down also. Tapered off of one left on one. Without it I can’t take of my family, point blank. Nor would it be fair for me to continue to take care of them. They deserve someone better. Someone in whom is not eaten up with osteoarthritis. I do the best I can but they know about my many broken bones, car accident, my back, Etc.. We shouldn’t have to be telling our children why we can’t do this and that nor because of it they can’t do something as well. This is what our country has become, an embarrassing mess. I’m ashamed of them. On the 4th of July I was physically sick to my stomach. Little did I know that our government would rob me of the joy of a favored holiday as well. Every firecracker I heard, every patriotic song played, all I could picture was another veteran laying there by themselves dying in pain. Then of course I had to wonder just how many folks were by their selves wracked with pain when in years previous were out celebrating amongst the healthy. I hope someone of great importance sees your story and runs with it. My heart literally breaks each and every time I read a story or someone’s comments on this site. To think so many are suffering so needlessly without just cause is almost beyond comprehension. Take care of yourself and know Suzanne that you are being prayed for with faith.

Neldine Ludwigson

I’m so upset that this is happening so damned often now. I had to see a substitute doctor who barely looked at me give a fifty minute spiel and then drop the hammer. Only way I would get even a taper would be to drive 82miles each way to get the useless injections from Hades. Even with my full dosage it would be awful to do the drive then spend hours dealing with nonsense from a one star rated doctor. Guess what, instant quick taper off the meds I took properly, never flunked a count or test, too bad. Backyard told me my back was all healed, and wait for it… the pain is all in my head! Over and over this is happening and nobody wants to hear any facts. So frustrating.
Sorry you’re in the sinking ship too. Damn.

Kerry Heffner

Sorry you are dealing with this. I, too was told my fentanyl patches are being taken away. They lowered my dosage and added oxycodone. Next visit no more patches. Then more oxycodone added. Don’t know where they plan on taking me from there. Kinda scared. Chronic pain patients are suffering because of others illegal use of opiates. Government doesn’t care and doctors are scared. There goes any quality of life we may have gotten from our meds!

Alan Edwards

Sorry for what you went through. All chronic pain patients have become punching bags in a now sadistic USA. I get pummeled weekly. 90 mme is an imaginary, guideline and is not law. It was pulled from the air. Pharmacists, techs, and doctors have become abusive. Though I do know pharmacy techs who are questioning and advocating for me at cvs. There is no excuse for the abuse and harassment of sick people and healthy people. It is not a good time to be ill or incurably suffering. The sadism going on now will never be forgotten and God will judge the hideous torture and those responsible someday. I have to pray before each doctor and pharmacy visit for protection.

Kris Aaron

Your “doctor” was telling you nonsense he’d pulled out of his… let’s call it his hip pocket. He wants to fire all his chronic pain patients rather than risk the DEA’s wrath. That’s understandable.
But this individual is too cowardly to just tell patients the truth: He’s afraid of losing his license to practice medicine so he’ll no longer write opioid prescriptions. Sounds like he was caught off-guard and spouted any ridiculous excuse he could come up with.
I’d recommend getting rid of this quack and finding a more compassionate physician.
It may mean moving out of the country — depending on the level of pain, I know some people who have chosen that option. Others, tragically, are living with such terrible pain they’re considering taking their own lives or have already done so.
Our own government has turned on us because it has failed to keep illegal drugs from being imported into the US. I guarantee that powerful politicians will never have to suffer from chronic pain — there will always be opioids available to them.

Notasheep

I am so sorry. One by one the good docs fall leaving the few still being treated appropriately to flounder in shock and worse, fear. How did we, those who were strong in themselves, wind up victims??

Janeen Utley

Suzanne I am so sorry to hear this news!! I know how hard things have been for you but this is just awful!! It is Inhumane what this Dr is doing to you!!! I agree with Jim Broatch , this Dr needs to at the very least give you some time to find a Dr who can help you , you need your meds to be able to have some semblance of a life and not have to totally depend on someone to help you with daily normal care like getting to the bathroom brushing your teeth ect I can’t believe that Dr is leaving you hanging like that! And I understand the pain spikes and having a possible stroke from your blood pressure rising from the pain !! It has happened to me and also from steroids that are initially given for treatment for RSD CRPS when first diagnosed!! I have a double Rare Gene mutation that I could have a stroke from if my pain wasn’t under control , so my heart just breaks for you!! Definitely take Jim’s advice Start looking for a Dr who is understanding and can take you on as a patient!! Sending prayers for you and and your husband and family I hope things work out for you in your favor , God bless you , your warrior sister friend 🧡🎗️

Louis Ogden

I’m so sorry, Suzanne. You are very brave to ‘keep your hopes up.’

Christiana Hargis

I‘ve had 5 failed spinal surgeries, including fusion with bone transplant. Been on the Fentany 100mcg for 10 years. 3 years ago I wanted something else. I was prescribed 60 mg morphine sulf ER twice a day. For breakthrough pain, 10mg Oxycodone. It gave me my life back. I take it as directed. Followed the rules. I was told by my PM that he will only prescribe for another 30 days. Then „cold turkey „. I’m 65 years old and very afraid.

I can’t tell you how many doctors have thrown me out of their practice without explanation. One was because I questioned a $30,000 office charge. I have been in chronic pain at an extreme level for over 40 years. It has been horrible but I keep hoping but the medical field continues to let me down. I’m not surprised this has happened to you but I am sorry that it has happened to you.

Rita KIMBEL

It is all crazy, and I’m so sorry this is happening to you. My date of withdraw was Jan.2017, and I haven’t been the same since. I focus on the hand, damaged, burning neuro pain, can’t put it in water or even have the wind blow on it. Blow drying my hair is not happening. The insurance company dropped the coverage that month and my family doctor couldn’t write my script any longer, CDC recommendation has ruined my life after 15 years of proper pain medication, ok, I’ll say it, Oxycontin 80/ mg. Twice a day. Allowed me to function as a mother, wife and care taker of my neice’s baby and my mentally I’ll sister. I don’t like sitting in pain unable to participate. I’m mad as hell, I’m exhausted, no letters I write will change anything. Now I depend on you, Dr.Lewis and others to fight the fight at the big house. There are so many of us that need you to keep up the fight, don’t let yourself be denied proper treatment, if you do the pain becomes the ruler. It’s got me right now, I’m asking for an increase in millegrams this month, my regimen is neurostimulator, Xtampza 27mg, MMJ ASAP. My costs since last year up 300% a month for pain meds and monthly payment of the pain Specialist. I just want my doctor and medicine back. We are Collateral Damage, don’t give up.

Rose

So sorry this has happened. What I don’t understand is why everyone keeps repeating the misinformed view that all these people are dying from medically prescribed opiods when in reality the vast majority of the deaths are from synthetic drugs being imported mostly from China. The fentanyl patch I use for pain does not make me high. It allows me to walk and stand longer. My daughter’s boyfriend was an addict and he died last April from a fentanyl overdose. However, the fentanyl he injected, was mixed with heroin and it was a powder. The addicts I have spoken to recently through trying to understand this, are all using it because it is cheaper. This drug is not the same form or dose and is deadly. As a result, pain patients and doctors are being put into a ridiculous position. This needs to be studied and the difference needs to be noted or we will continue to be made to suffer and the problem will never get better.

Steven

I’m so sorry for you Suzzanne and for all of us in this taper till you die predicament. That really is all it is. But how do we keep hope alive when honestly our lives have been ruined and the mental and physical pain we are being put through is incapacitating. No one including my family even believes it. they believe that suicide is a choice not a necessity. We are not mentally ill and maybe that statement about choice used to be true. We are all here to witness that it’s not. Down 40% on mme and going to drop another 70 percent? I can’t do it. They won’t even let us smoke pot so we can sleep some. The hope I see is the final hope and for me that is Jesus. I’ve never been a Thumper but I find it helpful and would recommend it to all of you. I can’t believe what we’re being put through some days it just seems like a nightmare that I’m going to wake up from. I wish I could say that had no fear but when I think about how much farther I can go it just makes me sick to my stomach. Jesus help us all. Amen

Suzanne L.

My heart goes out to you as it does to so many others like us. I’m in the same situation but different medication, I was placed on Dilaudid 8mg. 3 times a day for past 27 yrs. now I am without, a new state I moved to IN. from TX. the doctors here refuse treatment even though I carried with me all records and fresh mri scans I have so many allergies to other medications it’s frightens the doctors here in this new state I live. I’ve seen 2 Dr.s here this is the frightening part, an internal medicine dr. looked at may allergy list which is extensive, an old med. on list was darvocet, he went on to tell me that that med and demerol were one in the same, this is why I made myself learn medicine, I had the other doctor tell me that since I had at one time gone through radio ablation, which did not help he said that nerves were not burned hard enough, I am frightened but fighting, am so sick from having no meds, chills, sweats, fever, nausea, pain is so intense, this from a 20ft. fall, resulting in a failed spinal surgery lumbar interbody fusion and cervical 26 screws in my neck, C1 and C7 now affected along with arthritis in shoulders my thoracic area of spine is in jeopardy hands and body feel like they lay in lava this is my pain level of searing burning from accident and surgery. Don’t give up, I know it’s easy to say but I’m thinking of moving back to TX. back to my dr.s that really did care

Denise Bault

You can thank the CDC and the DEA for what is happening to you. Chronic pain patients are paying the price for illegal drug users’ addictions and deaths. So sorry you have to go through this! Let them know how you feel!

I would try kratom and CBD. There is a kratom extract called OPMS GOLD extract capsules. I have not been able to find one person who said they didn’t work. They cost about $11 a pill but Magnum Opus Botanicals pure red alkaloid and Caleb’s Concentrates pure gold extract are half that price and work as well. I think they work better than a 50mcg/hr fentanyl patch.

Pattisun

I’m so sorry this has happened to you. I feel we are just disposable people.

If you read the instructions on the box of my Fentanyl patch it shows a picture of a man’s back for placement! How many people have fat upper backs? He’s full of [edit].

Even dogs get pain care, can you imagine the outcry if our beloved furry friends were allowed to suffer?

The world is upside down. Avoid the news. Surround yourself with the right people (I’m a Buddhist, they are very supportive people 🙂).

One week at a time, one day at a time, one hour at a time….whatever it takes. It’s not in my nature to give up.

Suzanne, I’m so sorry that he is subjecting you to his fear & ignorance. Can you ask for a referral to another pain specialist? I would also report him to the MI state medical board.

Cheree

I cannot begin to say how sorry I am to read your story, Suzanne. This has become the so very sad state that all of us with chronic pain have all be forced into. We ARE “being left behind”. It’s unbelievable that we are here in the U.S. and that we aren’t allowed the right to receive appropriate medication for our conditions in the same way that other medical conditions receive. Where is the “Do Not Harm” for our health conditions? I just don’t understand.

Darlene Haight

My heart goes out to you. I was on a 75 mcg fentanyl patch for years, until I began experiencing side effects. I went off the patch, pretty much cold turkey. I know what it’s like. I now take oxy 10mg, up to 5 a day, but try to stay at 3 if possible – the minimum to allow me to function. That’s in addition to gabapentin, sulindac, & lorazepam; the first 2 definitely help, I’m not sure of the lorazepam. Could you change your pain Dr.? My family is fortunate in our Dr. – she’s very understanding. A few months ago my son’s urine test read negative for oxy; mind you, I control the pain meds I know that he’s taking it in the right dosage; after speaking with her she’s continuing to treat him. I do believe the test was screwed up, but we’re afraid to make waves even with an understanding Dr.!
I pray daily for this country, & the opioid “crisis” misinformation that’s being fed to the media & the public. I worry about those who will take that final pain relief – of suicide – once they lose their meds – and their hope.

Robert Stelzl

Let’s at least hope that he/she actually believes that he/she is helping you, the patient. Remind him/her ov their oath…”do know harm”. I’m facing the exact same thing in 30 days. Keep hope alive.

David Cole

I’m sorry Suzanne, doctors have turned into lying cowards! I know what you mean about not wanting to make them mad at you, it’s insane to think the patients have no rights whatsoever. Chronic pain patients are being tapered and cut off their medicines to a guideline that was specifically set for primary care physicians. Even the idiots at the CDC say they don’t recommend forced tapering as the outcomes always turn out bad. Now that the CDC has admitted over counting RX opiate-related deaths by 50% and to think all the government agencies are still using that flawed data. You’d think they would lighten up a little bit and print a retraction of some sort. I no longer believe for one minute doctors are innocent in this crap, they’ve turned into nothing but lying cowards. Something better change soon because I can guarantee you, pain patients undertreated for pain can turn into wounded animals. I’m not really sure why a bunch have doctors haven’t been shot already. I’m okay now but I know what I was going through my head when I was being forced to taper off of my medication and being told if I didn’t like it I could leave his practice, and he wasn’t nice about it, he was yelling at me. So what can we do, we can’t tell them what we think about them, no lawyers going to take our case. As I’m sure you know your frame of mind can make your pain better or worse. And don’t forget to make a complaint to your State Licensing Board. I don’t understand why this idiot would think taking you off the fentanyl patch is a good idea you can’t abuse those.
Just make sure you document everything that was said at your office visit, so that if anything does happen to you you can bury that lying cowardice Dr. It’s really time for some of these doctors that end up in jail.
I really hope things work out for you Suzanne, this tragedy couldn’t have happened to a nicer person, makes me sick to think about what these idiots are doing to pain patients.

Alanna Wilgus

I am a pharmacist and I have never heard that fentanyl patches work better on fat people. That’s just stupid! He apparently misread the guidelines. They state that patients should be tapered down to the EQUIVALENT of 90 mg of morphine, not TO 90 mg of morphine. Can you try to find a new doctor?
Also, false positives on drug screens are more common than you’d think. It’s shameful that he thinks less of you for it!

Sandy

Thank you for sharing the story of how the new medial system is depriving you of appropriate pain medication. So much of what has been going on in the pain community just doesn’t make sense. I hope you are able to work out a medication program that works out better for you. We are going to have to find some advocates in the government to help support out needs.

Bruce

Hugs and kisses to you, Suzanne for all you do. I don’t know what to say that could possibly make you feel better. When all of this hysteria started in Florida over the drug mills, I lived down there in 2012-2014, and was forced to move out of the state for my survival because the pharmacies would no longer fill my hydrocodone prescription that hadn’t changed in three years – same doctor, same pharmacy. I was livid, but most of all, desperate. I finally settled in Las Vegas, where the dry climate has helped my pain level a great deal. The temperature changes are gradual, and it only rains once in a fortnight. I was able to leave family in order to do that. I had to.
I go to a large pain clinic, where you can get lost in the shuffle with whomever is on call to see you at the time of your meds appointment, but sometimes that’s what you want. I can explain that by simply saying that the PA’s that treat me are covered under a blanket set of rules to operate by that essentially inoculates them from fearing for their jobs through government oversight. I attend the Las Vegas Pain Institute. Maybe they, or some organization similar can help you. You could always establish a cheap partial residency here, as there are cheap flights to all over the U.S. from Las Vegas. With a wink and a nod… You are a solid citizen with multiple issues, but a consistent record over the years. Please look beyond your area. It may be your only hope. I worry about people in your situation, and mine as well because what’s just fine and dandy one month is destroyed by a single decision the next. Keep HOPE ALIVE! Don’t give up, the world needs you!!

Matthew J. Smith

Yeah, I saw this coming for us 2 years ago so I prepared ….. frankly , I was suprised I found a PM practice that wouldn’t budge under the pressure, but they were then targeted for having all the IPPs that all other Docs in my area abandoned. ….. I’ve been advocating as best I can and all it’s done is frustrate me that it’s getting us NOWHERE. So, I think I’m tossing in the towel.

Karen C.

I’m so sorry that this happened to you Suzanne, truly a nightmare and my heart breaks for you. I also have RSD/CRPS and am on the fentanyl patch. My dose was lowered and my pain management doctor told me he is going to continue to lower it until I am off it. The patch is the only medication that has helped my RSD pain, all the other ER medications just don’t work as well. We are in new territory and God help us all.