Monday, February 19, 2018

On the Pendulum Swinging

It really should be titled "On Being Vindicated" but there is a reason for everything. This post is a little different than most, as I'm hitting on a hot-button topic and how it is personally affecting me. The opioid epidemic has people pointing fingers in all directions. Some are blaming the doctors for over-prescribing painkillers which then somehow led many to become addicted to street drugs. I agree there was a lot of over-prescribing, but much of the research is saying that, no, it wasn't causing a mass group of people to shift to street drugs. Then there is the more solid research that very few are talking about. An overwhelming statistic when it comes to those on heroin and other street drugs is this - most are either from very broken homes or were abused in some way. They admit to starting on the path out of an urge or need to escape the pain caused by that trauma. They end up deeper and deeper, especially since getting these drugs are easier and easier. Either way, there is an epidemic and the pendulum which once swung in favor of helping those of us with severe chronic illness has now swung the other way.


While my primary doctor battled UVA hospital for my right to have effective pain management which wasn't toxic or causing horrible side effects, UVA was fighting to remove everyone from any kind of narcotic painkiller- no matter what. They chose to ignore decades of research, even the latest reports, on how painful some of these conditions really are. Ehlers-Danlos, which I battle with daily, is labeled as one of the most painful - due to our joints dislocating and having constant muscle damage and train wrecks for spines. There is a ton of research to prove this. I wasn't asking for my pain to be a 0-2. I was begging to get it down to a 4. I know I'll never see a pain level of 2 ever again. Over and over I heard "If you are not on chemo, you are not getting that prescription here." Know what I was trying to get? Not Percocet, not Vicodin, not Diladud or Oxycotin. No. I was trying to get the Butran's patch... a low-level once a week patch with a ton of research showing it gives people with nerve pain their lives back, and at super low doses and without side effects. My primary doctor ended up chewing out the pain management team and wrote the prescription herself. All was good. I went from taking barely effective Tramadol multiple times a day to taking one pill on some nights and not at all on others. I had been taking up to 6 a day before that. It -reduced- my use of a narcotic drug and worked better than anything else we had tried.

Then the state of VA changed their laws about prescription painkillers... and my primary doctor had left the practice to go into telemedicine. I was having bad side effects from gabapentin and another medication and wound up in Neurology. I thought that appointment went well and we had come up with some good solutions. What she had suggested was taken to heart and followed up on to a T. I still needed the patch refilled, though, to have any decent quality of life, but UVA wouldn't write it and my new primary doctor was now no longer allowed. However, he knew of a pain clinic nearby which was all about conditions like mine, and they were known to be up to date on research for those conditions. Scared out of my mind that I was going to be told no again, I went... bringing 4 months of my medical records with me, including doctors notes. It was there I read that what Neurology had said to me, and what they had written about me, were two different things. They made it seem like I was clueless about why my eyes were so messed up and my brain was so foggy and everything else. They made it sound like I was attention seeking. They made it sound like it was that once a day Tramadol at fault for everything I had been referred to them for (It wasn't my idea to go there.) Made it look like I was seeking more medications when I was asking permission to get off of them! I felt betrayed and was bracing for more bad news.

Then I met Dr. P and his staff at the new clinic... his very kind, thorough, patient staff... The doctor and staff who said I'd not only be able to remain on Butrans, but it is EXACTLY WHAT HE WOULD HAVE WRITTEN ANYWAY! He knew my condition and the intense pain it causes. He agreed that enough other medications had been tried, and failed, and I still kept at them because I did not want to be on a heavy narcotic. I had completely stopped the Tramadol by that point, which he loved. The clinic had 2 stipulations, though. One was the opioid agreement, which I was already prepared to sign. The other was that all of my pain management had to happen there. So, on Friday I bid goodbye to Dr. M at UVA, the doctor who had been doing my trigger point injections, spine injections, and prescribing my migraine meds. It was hard to be kind in explaining why I had to go and how disappointed I was at UVA for choosing to ignore scientifically proven research in favor of an extreme "One size must fit all" approach. I feel horrible for those who are stuck with no other options and have to either take super toxic, minimally effective medications for a hint of relief or who are abandoned to be in pain due to the "must be on chemo to get anything" approach. The pendulum needs to find a middle ground. I fear that, out of desperation, many are going to go out and seek street drugs to find relief because the hospitals are abandoning them. Statistics are already showing that this is happening, making the epidemic worse. It's scary how we've been left to either curl up on the couch and wish we were dead, or choose to go an illegal route and risk dying anyway. I hope that middle ground comes soon for my suffering friends. I am thanking God for this new clinic and Dr. P for letting me keep my quality of life, one little weekly patch at a time.

*NOTE* Just a reminder that I am doing many other things to help keep the pain at bay. I am on a strict anti-inflammatory diet with minimal refined sugars, flours, no nightshades, no dairy, barely anything pre-packaged etc. I also have splints, therapy tape, massagers, TENS unit, natural supplements and more which are used. They do help cut the pain down some, but nothing can fully eliminate a 40-year-old brain with the body of a 90-year-old who has torn muscles 24/7, damaged joints, frayed and over-sensitive nerves (secondary Fibromyalgia) and a trainwreck for a spine (more on that later, just know the MRI was super ugly.) I cannot take NSAIDS, due to breaking out in bruises and severe GI upset.