Disclaimers: I talk about opioid addictions, opioid tolerance, weight issues and other things that could potentially be sensitive to my readers and I understand that.
While this blog is personal in nature, I’m NOT just advocating for myself, especially after finding out some frustrating news personally 2 days ago and real news about 5 minutes ago regarding the long term usage of opiate pain meds in those who suffer from severe chronic pain.
But, I realize personally and as an activist, there’s been a lot of tragedies as of late, it’s not that I’m not sensitive to that and my heart hurts for people who’ve suffered unimaginable loss whether it’s due to addiction issues or such as the horrific tragedy in Santa Fe, as well as I have people that I know and care about who have themselves or loved ones, life threatening conditions but don’t talk about them and never complain.
So please don’t read, if it could potentially be hurtful and hopefully you’ll respect that I’m NOT just trying to advocate for myself and I’m honestly not looking for sympathy.
And I apologize for how wordy this is. Not only is it tough to be concise for me, in a lot of pain, this is a topic that at best is a serious quality of life issue and at worst, possibly life or death, unnecessarily so, as I’ll thoroughly explain.
Editorial Note: After publishing, I realized I left out my normal disclaimer about seeking acute care for people in crisis by clinically trained professionals, I realize why I might have originally not thought to post it, given the fact that while I will ALWAYS advocate for people to be under the guidance of of clinically medical or mental health professionals, the topic of the blog is about the failure of a lot of a physicians, while well intentioned from a lot of them, when it comes to being adverse to dispensing opioids, I’m NOT a clinically trained professional, I can only give my opinions on matters, but NOT medical and mental health advice, evaluation and treatment should ONLY should be taken from a professional, in an appropriate setting and if someone is in crisis, they need to contact 911 (and or emergency services in their country of residence for out of country readers).
I apologize for omitting the above.
In HER defense, she did WARN me.
Meaning. when I was first put on pain meds, a little over 14 years ago, my long term primary care physician after the majority of non narcotic pain meds, pain management and anti-seizure meds like Neurontin, among other prevention pain meds, I was warned that eventually, if I was on them long enough, they would no longer work.
I’ve had a long history prior to EVER being on these meds, of being strangely over tolerant or prone to the worst side effects of so many meds in all different therapy classes and all delivery systems, when I had 4 epidurals prior to my son being born (none of them worked) over 25 years ago, nearly dying in labor over 15 years ago due to anaphylaxis because the 1st 2 epidurals didn’t work, the 3rd one for 45 minutes and the 4th one sending me into anaphylactic shock(which she, my pcp/prescribing doctor for all my meds is FULLY aware/has witnessed, as she delivered my daughter) and, I’m not easily anesthesized with either general or local anesthesia.
I’ve wrote more than one blog about opiates both personally and as an activist, as well as the labelling I’ve dealt with both post bariatric surgery and post suicide attempt which was almost 10 years ago (well, in August) especially once being diagnosed with mental health issues.
As well as being honest about having an addictive personality, in my case it’s tobacco and sometimes food.
I suffer from severe daily headaches (which opiates actually make worse) fibro, degenerative disc and severe neuropathic pain, both widespread and locally.
I gained 30 lbs (more about weight in another blog) starting in late 2016 throughout 2017.
However when my bilateral neuropathic foot pain (It’s not diabetic, been tested for that I am b12 deficient, the lowest it’s been since my reversal) got so bad 7 months ago, it kind of mentally broke me.
In my fitness heyday, I used to get an endorphin high from intense exercise, working out at an athletic level prior to 2007.
When I resumed walking again in 2014, I got the reward of that I could still walk.
It would hurt like HELL, afterwards, as my degenerative disc sits on my sciatic nerve, but I had a sense of accomplishment for someone who did so little and because I have a tendency to wildly fluctuate in weight post reversal but found my groove with walking lost over 50 lbs in 2015 (and at that time was over 60 lbs from my all time heaviest) and while I didn’t feel the greatest, carrying less weight at least helped with rib pain, as I have a tendency to carry a lot of weight in my midsection and have rib pain as a result of it.
And in the last 2 months alone, I’ve resorted to food (not eating tons but with metabolism issues to justify how much weight I’ve gained) gained another 30 lbs and am the heaviest I’ve been in the last 8 1/2 years (which I’ll also write another blog about).
About 7 months ago I found any walking caused an enormous amount of severe neuropathic foot pain, that made walking not worth it, as I started a walk, in the same amount of awful additional pain like I used to feel at the end of a long walk (I used to average 20-40 miles in a week until late Fall of 2017).
It put me at risk for falling, which I have. It put me with having such intractable severe pain widespread and locally to the point my medications which is a fairly high dose (not subjective as I’m on a higher dose than most post surgical patients but less than pallative/hospice care) that my current medication regimen couldn’t touch the pain I was in.
It also put me in more physical pain that’s unbearable 99% of the time and even if I don’t complain (which truthfully I do complain a lot) it emanates out of me, as sometimes I’m in so much pain, I can’t breathe (it’s not cardiac or pulmonary) or speak and I’m unintentionally even if I try to hide it, scaring those who see or care about me the most.
I still get a controlled amount of medication not exceeding MMEs for severe chronic pain peeps.
I get 2 doses a day.
I’m not saying how much medication I’m on, in strength or what I’m on.
I’ve noticed for the last 2 years (it’s been 3 or 4 since my strength got raised) that for a high dose, it didn’t work well.
The last 2 months especially, I’ve noticed that it was super hit or miss if the meds worked at all, not even helping with being so inactive and being so limited on the most basic of things to do for myself, such as walking and shopping by myself that I stopped doing that, if I had to do that by myself.
I would every 6 months or so for the last 2 years I’d ask my doctor if I could go higher in my strength.
Then finally with the fact that I’d have trouble losing this weight given how much severe pain I’m in the last time, I finally asked on Wednesday not being able to bear this, with my physician, if BOTH my dose and frequency could be raised, as any less than my current strength, doesn’t work very well.
I get the pressure that doctors up against with the opioid crisis, I’m not going to repeat myself, I’ve discussed this in MANY other blogs, as well as I’m not insensitive to the horrific deaths that of occurred because of it.
The problem is some people who wouldn’t be looking for a dealer normally now, are starting to die, because they are in so much pain, that when they get pulled off their meds, suddenly they don’t know how to cope with such severe life limiting pain, so some people are dying, tragically, because even though they were compliant with their pain meds, once pulled off, they don’t see any other option than finding a dealer to get illegal substances and are now accidentally are overdosing or at risk for that and addiction, where they wouldn’t be otherwise, if opiates weren’t so stigmatized, overregulated and not option now for those who aren’t terminal, even if they tried all kinds of therapies like I have and non opioid/narcotic/controlled substances but they didn’t work.
And while I know from the pain, I live in a place where drug addiction and unfortunately accidental overdoses is rampant. My local EMS people are probably in my apartment building because of that, about 3-4 times a week administering Naloxone.
Not everyone in my building or on my block is a drug addict or distributor but quite a few are.
And it’s terrifying to live amongst them, if I’m truthful, even if I’m empathetic to their disease, as far as the addicts are concerned.
When I talked to my physician in the morning on Wednesday, she really was at a loss what to do with my opiate tolerance, she knows I don’t get high from narcs, she didn’t feel comfortable raising my meds, at first suggested either other opiates that I haven’t tolerated well, if not terribly and then asked if she could consult her pain management specialist at her facility and call me back that evening.
Which when she did call me back Wednesday evening, I found that I’m going to be taken off my medications (I’m on other controlled substances which I still receive a therapeutic benefit) being given the opiate party line that most providers are using now.
I’m NOT mad at her. I know she is doing what she only feels is right, ethically.
And she always has had a holistic approach to health.
And while we always respectfully agree to disagree, I vehemently disagree with this decision given the dire consequences it’s already going to have on my life that’s been reduced beyond recognition, something she would know, as she’s been treating me for so long.
I ONLY found out early Friday morning, that Medicare and a lot of health insurance companies are no longer going to cover opiates in any other case except cancer or terminal cases, starting in 2019.
Ironically, prior to knowing my medication status from a prescribing and insurance perspective, after mulling it over for the last 2 years, 2 weeks ago I signed a DNR.
I haven’t been able though to leave my home or get out far enough by myself to get my DNR notarized and filed, because my pain levels are too high.
When I last saw my primary care physician at an appointment, in the end of March of 2018, I asked her about it and she said that she would do her end and that she respected my right to choose that.
It’s pretty extensive DNR that I’ve filled out, NO life saving or life extending measures of any kind.
Only comfort care measures are in my DNR.
And guess what, the person who has all these issues with oral medications, is super sensitive to most IV meds, including narcotics, most I can’t tolerate at all, others I have to be treated for migraines and hives, so it’s good all of that’s in my DNR, if I can’t speak on my behalf, it will for me.
I’m NOT suicidal.
I don’t get a choice of disability sets, and how they are rapidly changing me medically and cognitive I don’t get a choice at all going forward, of therapeutic treatments, but thank goodness at the age of 48, I get a say so on WHEN I can die, if it’s not mental health related.
And it’s NOT.
I feel terrified and devastated , like I’m sure other people who are in similar situations like I am, where they’re going to lose meds that are a last resort but help so much in quality of life and they are going to spend the rest of their lives in unbearable pain.
AGAIN, this is NOT about being insensitive to the opiate crisis and the deaths from that.
This has EVERYTHING to do with physicians, government and insurers saying because I’m not a drug addict, I don’t get anything even though pain meds for me were a last resort.
I’ve said as an activist, wisely, in the past, that “you can’t legislate addiction away”.
Even more sadly, is that I get that if I wasn’t lucky enough to escape intractable severe pain, at least I was spared an addiction to drugs and in my case I’m committed that if I can’t get pain relief from a physician where the meds and my usage is monitored, that I don’t want the HELL, that comes from the desperation that both legal and illegal opioid addiction creates, nor do I want to die that way.
I see how bad it is to live that way, where I live and I just don’t want any part of that, but am grateful that it is still a choice for me and I get that it isn’t for everyone.
I’m also not mad, nor am I saying with malice, had I become addicted to pills and then found a dealer and became addicted to illegal substances, I’d get methadone or Suboxone.
BUT, because I’m not a addicted to drugs, I am NOW going to get NOTHING.
Again, I’m not saying anything to try and hurt those who’ve lost loved ones due to opioid addiction.
But all sides of the Opioid Epidemic should be heard, including those who are going to be victims being sentenced to a life of uncontrollable severe pain because they’ve exhausted other therapies and nothing else works for them.
Because while it’s well intentioned at best, it’s repugnant at worst, getting rid of the ability to access opiates safely and affordably and with monitoring, will ONLY make the opioid crisis worse for almost everyone, as some people will skip even mentioning having pain and go straight to dealers, as well as it’s going to be a deadly dangerous dealers market, with prohibition of access to safely allocation and monitoring of legal opioids.
Not only at best is it naive to think this doesn’t warrant more of a discussion on how to deal with those in crisis with drugs, it’s deadly and just going to feed into the epidemic more of more people becoming addicted to street drugs, no longer having safe access with monitoring of legal opiates, even if they were compliant.
And those of us in crisis or could be, due to unbearable pain and have to live the rest of our lives that way, going forward who are no longer going to be able to access medications that give us any kind of quality of life, who are responsibly using them, is a travesty, don’t think it’s anything other than that, and as I said above, has the potential to have deadly consequences on people who normally wouldn’t engage in such unsafe behaviors but can’t handle a life with such severity of pain and no safe options, any longer.
I can only use my voice and hope that other patients, physicians, pharmacists and others who have similar concerns, speak up as well, to rethink how to best serve those in crisis and not put people in jeopardy like they are now, who wouldn’t normally be at risk but are now.
Note: I will ONLY publish constructive feedback or dialogue. And again, I apologize for how wordy this was, but there is so much at stake, not just for myself, as I’ve stated repeatedly but thousands and thousands of people.