Finally personally affected by #opioidhysteria

Disclaimer:  nothing in this blog post should be construed as either medical or legal advice.

It was bound to happen. With politicians’ screams about the so-called “opioid crisis” reaching a fever pitch, I was bound to be personally affected by #opioidhysteria.

Those who have followed my blog, or read my big post about my chronic disease, know that I lost a successful military career to an incurable disease caused by toxic exposures courtesy of my own government.

One of the reasons why I was forced into early retirement by the US Air Force was my need for opioid painkillers on a long-term basis:

IPEB_excerpt

“SM” stands for “Service Member,” and note the second-to-last line, “SM’s fibromyalgia pain requires treatment with narcotic medications,” as well as the earlier note about “multiple medication regiments and interventions” being unsuccessful at treating my condition.

I’ve had a prescription for 50 mg of Tramadol, twice per day, for some time now. I have at all times used my prescription medication responsibly, and not upped the dose in spite of it being inadequate to prevent very painful evenings and mornings before the medication takes effect. Tramadol provides zero “feeling of euphoria,” “high,” or anything else that to my mind would incentivize abusing it. Tramadol is a very different opioid from say Vicodin or Percocet. Simply put, it doesn’t make me feel “good” or “high”–it allows me to minimally function by taking the edge off my chronic, unremitting pain.

I have a wonderful doctor who I think the absolute world of. So it pained me to learn that, like so many other conscientious doctors who care deeply about the well-being of their patients, mine too is being pressured to reduce opioid prescriptions. It’s not surprising, given all the hyperbolic talk of an “opioid crisis” by politicians, bureaucrats, and mainstream media alike. In fact, this “pressure” is not merely of the professional disagreement variety–doctors can be prosecuted criminally for prescribing too many opioids, and there’s been such a chilling factor thanks to politicians from both major political parties that many doctors are now afraid to prescribe opioid painkillers at all. I found this article which talks about the dramatic drop in opioid prescriptions and fears of doctors that they will be criminally prosecuted if they prescribe them.

So what’s a chronic pain patient to do? These articles here and here do a good job of explaining how #opioidhysteria has destroyed the lives of chronic pain patients who need these painkillers to maintain minimal functionality.

In fact, here’s a breakdown of just how regulated opioid prescriptions are, which, interestingly, also contains information about medical (and recreational) marijuana legalization by some prominent states in spite of it remaining very illegal under US federal law.

Weak, non-opioid painkillers such as Acetaminophen (Tylenol) and Ibuprofen (Motrin, Advil) are worthless for chronic pain patients such as myself. Simply put, they do not help with the pain. They are not nearly strong enough to be of any help. Moreover, both have serious side effects–much worse, I would argue, than my Tramadol prescription long-term. Take, for example, Acetaminophen, which should not be used for longer than 10 days, and if used long-term can destroy the patient’s kidneys and liver. Yikes. Then there’s Ibuprofen,which can also damage the patient’s kidneys, cause thinning of the blood/uncontrolled bleeding, and also cause heart attacks! It is also not recommended for use over 10 days, and note that neither of these medications is recommended for the treatment of other than “mild to moderate pain.” Sorry, those of us with severe pain, not only will these medications not work, they will potentially kill us if used long-term.

In contrast, Tramadol does not cause those nasty blood, kidney and liver side effects, and is prescribed to treat “moderate to severe pain.” And it does a good job at that. It’s also used for chronic pain patients, i.e. it’s safe to take for longer than 10 days.

Like any opioid, Tramadol has a risk of dependency and withdrawal if suddenly discontinued or improperly tapered. Still, chronic pain patients like myself have proven we are not addicts by using our medications as prescribed, in the amounts prescribed, and the rate at which we seek refills (which require a doctor’s prescription) is easily verifiable. So compared to ineffective pain killers, I say “hooray for Tramadol, and let’s stop all this opioid hysteria and targeting of chronic pain patients!”

Today I went in for a refill of my Tramadol prescription. This was by no means an unusual event. However, due to all of the new restrictions on opioid prescriptions, I was required to sign a Narcotic Use Agreement, because, obviously, I might be a drug addict who’s been masquerading as a patient with serious medical diagnoses these past 3 years:

Narcotic Use Agreement - for opioid prescriptions - 2018-08-07

I really didn’t have an issue with the agreement, because I’ve never abused my prescriptions and followed the 5 “rules” recited in the clinic’s agreement even before I was subject to such rules, because I am a responsible patient who cares about my own health.

The next step, however, was less pleasant: I was required to submit to a urinalysis test to make doubly sure I’m not a drug abuser masquerading as a patient with a serious illness. Now, I submitted to dozens of urinalysis tests during my time in the US Air Force, and came back clean every last time, and my test from today will come back clean as well. Still, the experience of being treated as a suspected drug abuser and forced to drug test, at a nearby lab along with folks court-ordered to do so based on criminal convictions/probation terms, was insulting to say the least. I am told that I will have to submit to a urinalysis test from now on every time I seek a refill of my prescription. Moreover, I am concerned that my doctor might come under fire for continuing to have the courage to properly treat patients like myself, something I would very much hate to see.

So what is next for me? Well, I’ll continue to speak out against #opioidhysteria along with the many other chronic pain patients who have been harmed by this ill-guided and unsound policy of politicians and bureaucrats imposing their superstitions and one-size-fits-all “solutions” on doctors, and adhere to the terms of my Narcotic Use Agreement. But now I get to worry about being “cut off” and forcibly tapered off my Tramadol prescription because opioids are now “evil” and apparently so am I for getting sick and needing them.

Long term, it seems I’ll need to seek a substitute. Massage and acupuncture are the sorts of treatments that in addition to being expensive, have very temporary pain relieving effects. I have not tried CBD oil, in large part because marijuana is illegal under US federal law in spite of my state, California, legalizing marijuana for all uses–medical and recreational, and until recently I was career military and very used to following the law. The DEA, at least, seems to believe CBD oil is illegal under federal law, although obviously there are not enough federal law enforcement officers, and more importantly, not enough federal prosecutors, to effectively prosecute individual marijuana users (or CBD oil users) in states like California where marijuana is legal.

CBD oil sounds promising, as it appears to have pain-relieving effects without the “high” caused by THC. Still, its possible illegality under US federal law makes me very reluctant to consider tapering off opioids and moving to CBD oil (which I don’t even know for sure would help with my chronic pain).

Thank you to those who have driven the #opioidhysteria movement. While you may have had good intentions, chronic pain patients are greatly suffering due to your efforts. Congratulations.

Book reviews of my first novel

Hoffnungslose Ziele book cover

I talk a fair amount about my first published novel, and its sequel which is making the worldwide distribution rounds starting tomorrow!  As an author, perhaps in particular as an independent author, I struggle with my own self-assessment of my work.  Is it good enough for people to actually read?  Will they like it?  Am I wasting my time by putting my works out there?

I’m no stranger to writing.  As an attorney of 11 years, I spent an inordinate amount of time reading and writing–but technical, legal reading, mostly of case law, and writing court motions or the occasional appellate brief (which trust me, every attorney despises–well, most every attorney).  That’s a very different kind of writing from creative writing, and regardless of how good I thought my legal writing was, or how many cases I won, I will probably always be insecure about my creative writing.

I published Hoffnungslose Ziele:  A Dark Journey of Lost Causes, my first novel ever to grace store shelves (both physical and virtual, as it is available in both print and eBook formats), on 19 September 2017.  Since then, I’ve been extremely encouraged by the feedback I’ve received, both privately, and less frequently, in publicly posted book reviews (which no author can ever get enough of!)

Because of a strange hiccup with Amazon reviews disappearing, sometimes before I could even read them, I’ve started to be more diligent about checking for (and taking screenshots of) new reviews, and I have also made several public statements encouraging readers to leave reviews at Goodreads rather than Amazon, since it seems to have less issues in terms of disappearing reviews.

I’ve consolidated those reviews I managed to screenshot (6 so far, including an Amazon review that vanished after I took a screen shot–maybe the reviewer changed his or her mind) on my book’s main page, but this morning I woke up to a review that floored me so much I just can’t help but share it:


This book was unexpected. A friend of mine recommended it to me and I was skeptical. I’m not a fan typically of anything vampire related but this book was different. From the beginning, you feel like you can relate to the characters and it’s like you’re there. It’s been a long time since a book has taken me to an entirely different world. I read it in one sitting and had to live on a couple hours of sleep the following day but it was well worth it as I seriously couldn’t put it down.

I’ve been in a very bad relationship and Anna’s disappearance (I won’t reveal too much of the story) was actually therapeutic for me as it was tough to dig in the past but also, reminded me that even when something awful happens to you, if you can get out then you can become an even better, stronger person from the experience. I started reading this book thinking it wouldn’t be my cup of tea and ended up reading it twice, which is a first for me. I wanted to be sure I understood it all.

The references to heaven and hell really made me start thinking about so many “what ifs” about when we die. You can tell by this book that the author has studied a variety of different topics that have been beautifully woven into this storyline. When Christine became a werewolf, I felt that I could smell what she smelled, and hear what she heard. I’m not a writer and the way the book was written made me actually think in my head, I feel like I understand what it’d be like to be a dog (lol) and again, being able to put yourself not only into different scenarios but being able to imagine how it’d be if you were an entirely different species, is something that I’d classify as true talent. Like I said, I find myself rooting for the characters and taking qualities and feelings that each character felt and applying them to my own life – feelings that have been buried for so many years came back with this book.

What really helps here is this novel is written as journal entries of the characters so you understand the character’s feelings as you’re gaining insight into their experiences that shaped who they are. The sorcery is written in such a real way that you feel like it could really happen, it’s that book that you know is fiction but you forget that while becoming so engrossed in the storyline. It’s a journey that delves deep into struggles with morality/ what we perceive as right and wrong based on our upbringing/ experiences and really makes you feel like you can triumph even after truly horrendous things happen. You will fall in love with the writing style, the storyline, the characters, and will be able to relate to so many deep and dark feelings that aren’t talked about much in society but should be.

This book is such an incredible read and one that will have you ordering the next one before you even finish it, I promise you! Be sure to pay attention, there are a lot of metaphors, it’s not some cheesy book about werewolves and vampires, it’s a deep book about human nature and the struggles we all face.


Wow! And after that write-up, of course she gave me 5 stars out of 5!

As I mentioned on my page about living with a chronic illness, I wrote and published both as an escape, and because I was genuinely afraid (and still am) that my days of being capable of writing a novel are numbered due to the cognitive difficulties that come with my disease.  Since writing had always been my childhood dream, I felt compelled to indulge that dream to matter the cost.  And that’s just what I did.

Reading the above review, which was posted yesterday on Goodreads and Amazon, I can now say “it was worth it.”  To leave that kind of impression on even one person absolutely floors me, and I was blown away by her comments on my book.  If I receive no other positive feedback on my first novel, or even if a bunch of people now tell me they hated it (no one has yet), it won’t matter because one person thought it was amazing and took the time to tell the world. Thank you so much!!

Hoffnungslose Ziele II:  Anna’s Crusade comes out tomorrow.  I would have liked to have made it available in print as well as eBook, but sales from my first novel just didn’t indicate there was demand for a print version.  Hopefully someday that will change, and I can add print distribution.  I personally have a strong preference for reading books in print, although I have a sizeable collection of eBooks on both iBooks and Kindle.

The sequel also tries to tackle some “big issues” in the midst of the characters’ adventures, so hopefully it’ll get a similar reception to its predecessor!

Podcast interview about my first published novel

Recently, I was interviewed for the podcast “Tales From Tef’s Tavern” about my first published novel, “Hoffnungslose Ziele: A Dark Journey of Lost Causes.” You can find the podcast episode/interview here:

https://player.fm/series/tales-from-tefs-tavern

Episode 5: Hoffnungslose Ziele

The podcast is also available on both iOS and Android. (I tested with both the bundled Podcasts app included with my iPhone and iPad, and the Podcast Go app for Android). Just do a search for “Tef’s Tavern” from within your podcast app and it should come right up. My interview is on Episode 5, but check out other episodes of the podcast/consider subscribing while you’re there.

The podcast also has a website at:

https://tefstavern.wordpress.com

I hope you enjoy the interview, and before I forget, for the rest of July and all of August, the first 100 people to use my eBook coupon code can pick up a free electronic copy of my book, “Hoffnungslose Ziele: A Dark Journey of Lost Causes.” (There are less than 100 coupons still unclaimed, but that was the starting number). Also, “Hoffnungslose Ziele II: Anna’s Crusade” hits stores on the 31st! More details on the eBook coupons in my previous blog post!

eBook coupons!

With my second novel available just about everywhere on the 31st of July, I thought I’d give away a little present to those who haven’t read the first yet but would like to.

From now through 31 August, the first 99 people to use the following coupon code will get a FREE eBook copy of Hoffungslose Ziele:  A Dark Journey of Lost Causes3WNAA2

All you have to do is purchase through this bookstore:  https://store.bookbaby.com//bookshop/book/index.aspx?bookURL=Hoffnungslose-Ziele&b=p_fr-ve-bl

Select the “eBook” option, proceed to checkout, and enter that coupon code 3WNAA2. Don’t forget to leave a review if you like it!

Hoffnungslose Ziele book cover

Debunking the cholinergic hypothesis of Gulf War Illness?

Series - 8 on 1

I have Gulf War Illness. Or rather, whatever we’re calling the same symptoms in veterans of the war in Afghanistan. (The VA is currently calling them “chronic multisymptom illness” and “undiagnosed illnesses” because they don’t like the term “Gulf War Illness”).

This article repeated one of the more popular hypotheses about the cause of Gulf War Illness, that it is caused by cholinergic dysfunction due to exposure to organophosphates (pesticides, i.e. nerve agents) used by our own military on its members to keep nasty bugs away from us. (And in the process giving between a quarter and a third of us lifelong disabling symptoms of ME/CFS + Fibromyalgia. Thanks for keeping those mosquitoes away from me! 🙄)

Recently, I underwent RNA genotyping in order to determine which variant of the rs17228616 allele I possess:  the most common G;G variant, the less common G;T variant (occurring in about one-quarter of the population), or the extremely rare T;T variant. It was hypothesized that “[b]ecause rs17228616 promotes higher acetylcholinestase activity, [possessing the G;G variant] may be relatively protective against nerve agent and pyridostimine bromide exposure.” Naturally, I paid for this advanced genetic testing out of my own pocket, because it’s not “medically necessary” yet–it’s the stuff of pure research. But medicine moves too slow for me, so into the realm of research I have progressed.

I just got my results back and guess which rs17228616 allele I possess?  G;G. 😲

So, I’m not sure exactly what to make of this, except that consistent with various genetic tests I’ve had done on my DNA, I don’t seem to have been predisposed in any biological way to contract Gulf War Illness in Afghanistan. I’m just one of the unlucky one-quarter to one-third of war veterans who got sick from…something…we were exposed to over there.

On a more positive note, this article suggests repairing microtubules damaged by something might reverse some or all of the symptoms of Gulf War Illness. Let’s work on reversing that brain damage, please! Additionally, this article involved testing gene expression in Gulf War Illness patients and comparing it to other diseases, finding the highest level of gene expression overlap with Rheumatoid Arthritis and hypothesizing that the following medications might relieve some or all of Gulf War Illness’s symptoms: Infliximab, Adalimumab, Etanercept, Leflunomide, Cispatin, Tamoxifen, and Fulvestrant. Needless to say, I am pursuing a medication trial with one of those seven listed glimmers of hope, as I have no intention of quietly sitting (or lying down) and continuing to waste away!

So what did I learn? That the hypothesized “minor RNA allele leaving me more susceptible to neurological damage from pesticide exposure,” or in other words, that I was genetically predisposed to get Gulf War Illness, is apparently not true, at least in my case. I have the “healthiest” genetic variant of rs17228616 and should have had the highest level of protection against pesticide exposure causing permanent neurological damage going into my deployment to Afghanistan. I still got sick, and am still permanently disabled barring a major medical breakthrough in the treatment of either Gulf War Illness or ME/CFS. (Which may or may not be the same disease, in spite of having the same symptoms). On the positive side, as previous DNA testing has shown, I have “great genes” that present a low risk of various health problems, so at least I passed “healthy” genetic material on to my children.

I think there is far more to this medical mystery left to uncover… 🤔

Trying to Separate “Me” from “Me”

I have at least two public identities:  the author, and the chronically ill guy.
Kevins

Originally, I set up this site for the author “me,” to promote my book(s). The same is true of my Twitter account, @KevinReinholz.

However, it wasn’t long before I found myself drawn into the quite excellent communities for individuals like myself who suffer from chronic illnesses (and often lack another means of support, connections with others who “just get it,” or who cannot endure the strain of traveling or even being out past dinner time in order to take part in a physical support group).

Logically, I *should* separate the two Kevin Reinholzes, create separate websites and accounts for the author pictured on the left, and the chronically ill guy pictured on the right. (Note: since all of my debilitating illnesses are “invisible,” I’ve got the added insult of “not looking sick” which is a whole can of worms my fellow spoonies can easily relate to–the portrait on the right more accurately reflects how I feel even if the portrait on the left more accurately reflects how I look on the outside).

To be perfectly honest, my illness doesn’t leave me with the energy to bother separating the two, or spending the time necessary to establish an “author brand” or to promote that brand, an essential part of becoming successful at writing. (If you think writing a quality book is the biggest struggle for a writer, you are mistaken).

On a more fundamental level, as well, it feels disingenuous to separate “me” from “me.” There’s only one Kevin Reinholz:  I’m 37 years old, I’m married with four children, I have plenty of anxiety about the future, most of it illness-related, and I happen to write because it provides me with a much-needed release and sense of fulfillment. Since there’s only one “me,” why should there be separate “online Kevins” presenting different faces to the world?

Until recently I’ve been a very private person, and it’s not always easy to “put myself out there” or become vulnerable to potential criticism, or worse, rejection. Nevertheless, I am who I am, warts and all, and I think I prefer to maintain a single public-facing identity rather than promote separate “brands” as part of some master self-marketing scheme. I don’t make money from talking about my illness, nor do I want to. I want to change an unjust law that penalizes disabled veterans, in particular those retired from the US military due to a service-connected disability, and I also want to further scientific understanding of the root cause(s) of my condition(s) and advocate for a change in the way the US military does business in order to stop inflicting this sort of immune and nervous system damage on my brothers and sisters in arms, but those are primarily self-actualization goals.

I do want to make money from my writing. My work options are quite limited, and legitimate, well-paying “telecommute” or “work from home” jobs seem to be more the stuff of myth than reality. Plus, turning my hobby and passion into my career has an extreme amount of appeal to me. Still, I write because I enjoy sharing my imaginings with others. I have no desire to become a marketing expert who spends far more time doing entrepreneurial sales and marketing work, albeit with my own product, than actually producing works of fiction. I am sure many, many authors who are unfortunate enough to lack a wealthy corporate patron feel the same way. They write because they’re passionate about writing, not acting as a sales person. I could sell used cars if sales were my passion. I could help others establish their “brand” if marketing were my passion. Instead, I publish at a financial loss, because writing is my passion, not those other things.

Come to think of it, I don’t see the need to separate “me” from “me.” I’m one person, an author who happens to be chronically ill.

Losing a Career to Chronic Illness

I’m still processing this one, so I will likely have further reflections down the road, but like many others, chronic illness has dramatically impacted my ability to work. In fact, it led to my involuntary disability retirement.

I served on active duty in the US Air Force for close to 11 years. For the first 6 of them, and much of the 7th, I was the picture of health. Then a deployment to Afghanistan and toxic exposures led to declining health–acute for a very brief time, then gradual, until I slipped off the plateau in 2015 and steadily declined from there. So now here we are.

I have a much longer post that I’ve been working on for a while that goes into a lot more detail about my illness history, but suffice it to say, my health became bad enough that, having a career that carries certain physical requirements and regular health and physical fitness check-ups, I couldn’t hide my illness forever and wound up under medical review, then facing a medical board to decide whether I should be allowed to continue serving or not.

Last week Friday, 16 March 2018, was my last day of work. After some touching and very kind farewells, I came home and took off my uniform, presumably for the last time. Tomorrow, Monday, is going to feel very strange, because I won’t be getting up for work. The future is now uncertain. I know that geographically I am where I want to be. I live in the home where I want to live, in the town where I want my kids to finish growing up (my oldest is already getting close), with the family I always wanted. I have a guaranteed pension, as I was forced into early retirement, which means military pension, and rated 100% disabled by the Department of Veterans Affairs, which means disability compensation for my service-incurred injuries/illnesses, so money is not the all-consuming problem it is for many people in my situation–chronically ill and unable to work full time.

Still, there will be a fairly drastic reduction in income, and that means either applying for more disability benefits (Social Security, which definitionally should be very easy to get, but according to friends is in fact very difficult to get without hiring a lawyer and fighting the Administration tooth and nail to follow their own regulatory guidance), or trying to find a new job, or do independent work on an unpredictable basis. At times, that terrifies me, while at others I feel at peace with it and confident that everything will work out, because I know I am where I am supposed to be, and did not choose my life circumstances or the premature termination of my career. On the other hand, a great many people who do not deserve to be in poverty or struggling to survive, are forced to do just that, so one cannot be too confident in his First World privilege. Bad things happen to good people all the time. Outcomes are not always determined by merit. I’m sure we can all think of rotten people who seem to have “all the luck,” and saintly people who have had to struggle all their lives and face unspeakable pain on a recurring basis. Still, I feel in my heart that everything will be all right, even if my thoughts sometimes turn to panic over the future.

To make a long story short (for now), though, chronic illness doesn’t just take away our ability to attend late-night outings with family and friends. It doesn’t just keep us away from the movie theater or make travel difficult. It can affect our very ability to make ends meet financially, and put unbelievable stress on a family and on relationships. It can also take away our sense of self-worth, since so many 21st Century cultures place value on an individual’s productivity, i.e. see people as a tool or a means to an end, rather than recognizing the intrinsic value in that person’s simply being. This is a particularly difficult problem for those of us with chronic illness, as losing the ability to advance in careers or even to have a career can drastically diminish our sense of self-worth, and lead to a whole host of mental health problems as a result.

So last week was my last week wearing the uniform of my country, and the end of a decade+ career. I wonder how I’ll feel about that in a week, in a month, in a year? For now, I plan to focus on healing and rest. I’ve been in a negative spoon trap (using more energy each day at work than I had to give) for at least the last 2.5 years, and it was slowly killing me (and making my illness worse). And that was with accommodations in place that reduced my working hours to 6 hour days and included a mid-week day (Wednesdays) teleworking to reduce the impact on my body.

I’d be lying if I didn’t say that just like facing a chronic illness itself, losing a career to a chronic illness is a mourning process, with all of the stages of grief. And in my case at least, the stages are not linear–it’s possible to be at acceptance one day and go all the way back to denial the next. Somehow, though, I trust that things happen for a reason, and that looking back this will have been a positive step, since as I mentioned before continuing to work in my present career was slowly killing me. Now I can focus on wellness, my family, and trying to find something that is less demanding on my both physically and cognitively.

IMG_1018
Yes, I know I’m “out of uniform” since the #BlueHeartBadge is not an authorized uniform accessory, but not all disabilities are visible and it’s pretty hard (and senseless) to prosecute a retired guy for such a minor infraction.