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.
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