A Patient's Nightmare

The worst part about nightmares is when you realize they are real. Not some bad dream from which you’ll wake, sweating and with racing pulse. But very real, in-the-moment dread, terror and raw anxiety.

One of my nightmares is not having support from the medical community when I need it most because I choose to use a non-toxic plant to treat my health problems. Though more and more individual medical practitioners are tolerant, even accepting of patients using medical cannabis in PA, the support offered by medical groups and the medical establishment, in general, is still very limited. Whether this limited support is motivated by organizational politics, unfounded fears, or ignorance, I believe much of it can be traced back to the inadequate and often unjust laws and policies established at the state and federal governmental levels. That needs to change.

It was recently confirmed for me that for someone who is illegally treating themselves with cannabis, there are cracks in the system which can swallow you up. Act 16, the law which authorizes a medical cannabis program in PA, was certainly a step in the right direction, but the program is far from operational and offers no real patient protections at this point for adults.

Act 16 does allows for a safe harbor provision for caregivers of minors to obtain and administer medical cannabis provided they comply with the various restrictions in the law. It is far from a comprehensive protection, but it does validate the legitimacy of the patient’s need for medical cannabis. The provision doesn’t seem to be a very a complicated program to administer, and all that the patient’s physician is doing is verifying that the patient is being treated for one of the 17 authorized serious medical conditions. This opportunity for protection should be offered to all patients. It would certainly not fix all of the problems patients face, but it could help to legitimize cannabis patients in the eyes of the medical community.

For those who are suffering, dying, or otherwise feel they can no longer wait for the system to catch up, they are left with a dilemma; do I continue to suffer while I wait for the system to accommodate me, or do I break the law and take care of myself? There is a lot to consider and it’s not always an easy choice.

The decision to switch from a pharmaceutical based treatment program for chronic pain to a cannabis based program was not an easy one. I came to this decision because I was tired of the continued damage being done to my body from the decades of pharmaceutical use and the concern that these drugs would kill me, either slowly from the ongoing damage they inflict or quickly via toxic overdose. To make such a switch I had to consider the legal ramifications to myself and my family, financial costs, and how well I could manage my chronic pain condition. I also had to consider how to make my illegal approach work within the medical community where it is frequently still seen as suspect, because like it or not I still have to interact with them on occasion.

Working around my pain doc’s schedule of drug testing while weaning off of the pharma meds and onto the cannabis treatment was a real trick and would take another blog to explain. But certain other medical situations would be out of my control, like an accident or sudden illness requiring short or long term treatment by unknown medical staff. How do I deal with those situations where I’m stuck in a controlled medical environment over which I have little control? I could always refuse medical advice and walk out, but how do you do that when your body is broken and you’re at the mercy of someone else for care, and that someone doesn’t know you or how you came to use cannabis to essentially save your life.

I had a health problem occur a few weeks ago. I knew it wasn’t good and I didn’t want to mess around with it, so in short order I went to my primary care doc, then a surgeon and then off to surgery a week later to repair the issue. When discussing my medical history and pain control plan with the surgeon I told him about my cannabis use and that my primary concern was that I would have as much or more back pain than post-op pain. He agreed with my assessment and we discussed some details of how to manage things. Apparently we were not fully communicating, or someone in his office didn’t get the memo, but my idea of what I expected from him was not the same as what happened. He did suggest that I “don’t overdo it with the cannabis” when treating the post-op pain in combination with the pharma drugs. He said this as he was leaving and I almost didn’t catch it but afterwards I was thinking “WTF” – you want to warn me about not overdoing it with cannabis but give NO warning about not overdoing it with the narcotic that you’ll be prescribing!!

The surgery went well and I actually had NO back pain in post-op or for the ride home. I had “front” pain around the surgery site, but the absence of back pain was almost magical. At best, I always have at least some mild stiffness and soreness in my back, so this was a real treat. I assumed the relief was from the anesthesia drugs still in my system and that at some point it would wear off. It did.

The next day my back starting aching and then as if a switch was flipped, it progressed quickly into extreme flair-up mode. Although I always have varying degrees, intensities and frequencies of back pain throughout the day, every day, I don’t get too many extreme flair-ups. Don’t get me wrong, I’ve had more than my share over the years and they leave me in a condition where I can just about function to take care of my basic needs and can last from several days to several months or longer before it settles back down to where I’m at my baseline. 

My pain that day shot up to a solid (7) on the pain scale (1-10) and was continuing to intensify. For perspective, at (8) I’m in total despair, sobbing uncontrollably and dialing 911 because I can no longer deal with it. At (9) I’m screaming uncontrollably, totally paralyzed by the pain and want to die. At (10) the screaming stops because I’m horse or passed out. I’ve only reached (10) maybe two times and wish to never visit there again.

Dialing 911 is a two edged sword. The hospital staff can offer me pain drugs and monitoring that can’t be done at home, but the additional trauma from the transport to the hospital and handling from gurney to exam table, and the stress of the situation cause an increase in pain which makes a horrible situation worse! And now do I even mention that I use cannabis for pain, lest they think I’m drug-seeking and withhold pain meds. It’s been my experience (prior to being on cannabis treatment) that screaming patients brought in by ambulance get attention and are usually accommodated with successive and multiple shots of Demerol and morphine in the thighs until things become more manageable. Although I’ve done it five or so times, a trip to the hospital to manage pain is a traumatic experience and one that I desperately try to avoid.

The lowest, most frightening point in my life occurred when I went to the hospital for pain control. That time I waited too long to call the ambulance and was hitting a solid (9) when I got to the emergency room. Standard protocol for my complaint was to get an x-ray of my back to make sure the pain wasn’t caused by a fracture or something, which of course it wasn’t, but I was beyond speaking and couldn’t tell them that. The transfer onto the cold metal table for the x-ray put me right into the worst pain of my life. I’m not sure but I believe I was in and out of consciousness, screaming without any noise (since I was horse) and just a total blubbering, slobbering mess. By that point the staff apparently realized that it was pointless to try to get the x-ray, so they left the room without a word. Every one of them. They left me alone, totally helpless, at the absolute worst point in my life. It was the most heartless thing I’ve ever experienced. I thought I caught a glimpse of one of the nurses crying as she left. Maybe they couldn’t stand being around me. I would have left if I could.

That was back in the mid 90’s. Flashbacks of that moment run through my mind whenever I think about having to make the call to 911. Call too early and I might miss the chance to tough it out at home and avoid the entire hospital scenario, or call too late and relive the worst experience in my life.

I do what I can at home to avoid a hospital trip. It involves using various narcotics and other pain meds (now including cannabis – this was the first time I had to deal with this since going onto cannabis treatment) and applying heat to my lower back to divert the sensation of pain. A few times I’ve caused blistering burns when using a hot rag or heating pad for this purpose. It sounds extreme, and it is, but if it keeps me from that trip to the hospital so be it. I’ve explained this to doctors who have seen the burns but I truly don’t think they get it.

For the most part my transition to a cannabis based treatment protocol has been successful. Using cannabis oil for routine chronic pain control and for break-thru pain has worked about as well as the pharma drugs. I was able to wean off of all five of the pharma pain meds plus my bp med. However, I have yet to understand how best to use cannabis for severe acute pain. Cannabis helps, but I still had to resort to narcotics and other pharma meds for the flair-up. That being the case, I need to involve the medical community at some level. It’s not that I’m opposed to working with medical staff – in fact I prefer it, but the medical establishment has a long way to go to appreciate and effectively work with medical cannabis patients.

When I got the flair-up the day after surgery I thought I could count on my surgeon’s office for advice and guidance on what to take to settle things down. I was wrong. The staff person that my wife talked to said that they are only concerned with pain from the surgery. I would have to contact another doc who dealt with spine issues or pain management for the back pain. That was a bit of a problem. I no longer see a specialist for my back because I was told time and again that there is nothing they can do for me, so I stopped seeing the various specialists over the years. And the relationship with my pain management doc has evolved into a strange one of “don’t ask, don’t tell”.

After weaning off all of my pharma pain meds and repeatedly talking about the medical value of cannabis, it became clear to my pain doc that I was using cannabis for my chronic pain issues. Neither of us actually uttered the words that would confirm my cannabis use, though, out of concern that he would be compelled by his medical group policy to release me from his care for admitting that I was using a Schedule 1 substance. The doc seemed genuinely interested in my success and tried to be as supportive as possible, but laws and policies prevent him from fully supporting my use at this time. Since I stopped using the pharma meds and he no longer prescribes them for me, he’s not in a position to advise me on how to use them alone or with cannabis. It’s a weird situation, but it actually could be worse.

When devising my plan to go onto cannabis treatment I considered what I would do if I was released from care by my pain doc. I searched for a cannabis compassionate pain doc but could not find one in my area, so it’s good that my doc didn’t release me. But his ability to treat me is in limbo until the PA medical cannabis program is functional. Ideally I’d like to have a relationship where he could prescribe narcotics and other pain meds for me as needed for acute pain in conjunction with recommending medical cannabis for the ongoing chronic pain. So for now I’m mostly on my own, except for the love and support of others throughout the cannabis patient communities.

It was fortunate for this flair-up that I kept some of the previously prescribed pharma pain meds. My concern though was how I would react to them since I hadn’t been taking them for a year and I didn’t have the tolerance that I previously had. I know I couldn’t just restart those meds at the dosages I reached after years of use. This is where it would have been nice to consult with medical staff familiar with my medical history on how to use the various meds for an acute episode without overdosing. It turned out that I was able to use enough of the drugs in the right combination to get me through the worst part of the episode without causing respiratory arrest. Not that it seemed close. I purposely erred on the side of a lower than adequate dosage - essentially denying myself proper pain control to make sure I didn’t overdo it.

I know I am not alone in having to make these life and death decision without proper guidance by the medical community because of my medical cannabis use. It is simply wrong and it’s time that laws, regulations and policies address this. Without question, patient care needs to be the primary concern. Pennsylvania now officially recognizes that cannabis has medical value and that it could benefit many patients across the state. Protections from outdated laws and policies need to be established for those who either cannot or will not wait to use the cannabis plant to improve their health and well-being. Please make this known to your elected officials, doctors and anyone else who will listen and continue to fight for our natural right to use a plant.

Let’s end the needless nightmares and allow the dreams to prevail.

~Commonwealth Criminal