The following essay was written by a good friend of mine, an anonymous patient on the Medical Marijuana Registry
As many people know, states around the US are allowing the use of marijuana to treat chronic pain or otherwise incapacitating illnesses and disabilities (with the exception of Colorado, Oregon, Washington, and Alaska who have simply legalized marijuana altogether.) This, however, is not a piece about the legalization of marijuana, though I do support that for various reasons. This piece is about what is like to be a patient on a medical marijuana registry.
When I was first diagnosed with an auto-immune disorder, I was devastated. I remember going to the pharmacy to pick up my new life-style-in-a-bottle. And, man, was it a big bottle. It was the length of my forearm, and it had “refill as needed” written on the side. I sat in my car and I cried. I was not looking forward to shoving 9 of these down my throat every day (3 morning, noon, and night.) On top of that, I had steroids, pain killers, and a host of other scheduled drugs. I had cases of pill packs with labels so I didn’t forgot to take what and when and I was taking up to 17 pills per seating. I got really good at just swallowing a handful of them with a big gulp of water. Hooray for new talents right? I was on so many pills my birth control stopped working, leading to an accidental pregnancy and subsequent miscarriage (as one of the drugs killed basically anything trying to live inside of me. Sort of thankfully, I was in no shape to carry a child. Let alone care for one and raise it. I could barely get out of bed at this point.)
Eventually, I had to stop taking the original medication, and thus began the Pharmaceutical Gauntlet of “what won’t I have a reaction to?” I went on immunosupressors (6MP’s and 5ASA’s) and I also did a stint of chemotherapy treatments to try and quash my ever-raging immune system. I was allergic or had a reaction to all of it. Every 6 weeks the chemo made me stop breathing. For those that have never experienced chemotherapy drips, you have to start slow and over the course of the 4 or so hours they speed up the drip. For me, they could not speed the drip because I would stop breathing every time. I have a permanent bruise on my arm where a nurse who wanted to go home ripped the IV out of my arm because my treatment was “taking too long.” (I filed a complaint against her and showed my specialist, but who knows who else she treated so poorly.) I had to have a family member or friend sit with me, and take time out of their lives to watch me struggle to breathe every month. It was not a good experience. Eventually I stopped going.
I tried anti-nausea medications that have, for the most part, left me infertile.
During this time, the Medical Marijuana Registry was created, and I asked my doctor if this was something I could have. I never smoked in high school (really, I waited until I graduated because I didn’t want to hurt my chances at school etc…) But during my chemotherapy treatments it really helped with the pain and nausea. (My disorders also give me constant nausea, which is what the anti-nausea meds were for.)
I was informed that, according to laws, I had to try other drugs that were specific to my symptoms, and they had to not work for me, or cause me harm for me to be allowed to move to the next step. Which was Marinol (the synthetic version of Delta-9 THC, which is the most active chemical in marijuana.)
After (many) more trips to the Emergency Department at the local hospital I was finally allowed to try Marinol. Which also doesn’t work. I haven’t met anyone that said it does what it is supposed to. That’s not to say it doesn’t work for some; if it works for you, that’s great and I’m glad you found something that gives you relief.
After all of this, I was allowed to apply for my patient license, and be put on the registry. Now, while I understand that marijuana is considered a controlled substance by the federal government, I can’t say I agree with listing the names of patients on an easily accessible list. I am not very worried about the federal government coming down on the sick and infirmed, but I worry for our safety and privacy. I worry about housing and employment discrimination. Also, in my state, the registry is run by the Department of Public Safety. This has bothered me from the beginning. I feel that this contributes to the negative stereotypes that marijuana and/or marijuana patients are somehow endangering the public. More so than say, alcohol? Or tobacco? There have been literally no deaths attributed to the use of marijuana. In my research I found one secondary death, and this was someone who died because they believed their abilities were more than what they were (they could not, in fact, fly). Direct deaths are things like, cirrhosis of the liver or lung cancer, directly caused by the ingested chemical.
Anyway, the application process goes like this:
1. Get really sick
2. Take a bunch of medicines that make you ill to prove that you can’t take an insurance backed medication, because choosing your own health care plan with your trusted physician is a big no-no for some reason.
3. Download, print, complete, and mail all of the parts of the application (for someone with a condition, simply going to the store to get lunch can be a drain, so running all over town to obtain the things you need is that much more of a burden). These things include:
A meeting with your “trusted physician with which you have a relationship”
Getting to the office
Taking time out of your day, maybe you work, maybe you are just exhausted (I do not blame the doctor’s they are just doing what they are supposed to)
Get the papers notarized (luckily where I live medical papers are freely notarized, I am not sure about other states)
Take passport style photos (when I first signed up you had to mail in actual DVD’s but now you can send them .jpgs which is extremely handy)
Pay a fee for both your caregiver and yourself
Mail everything out, certified
(PS almost all of these steps cost something, which puts more pressure on those who are ill and can’t work.)
4. Hopefully get your cards (I did.)
5. Whether you grow or use a dispensary (in my state there are only a few) you have to go to the dispensary and get your clones (plants) or have a consultation. Here the appointments are a month or more out, since there are only a few. This means if you run out of medicine you can’t just go to the place and get more, you have to wait it out; wait out your pain, your nausea, your lack of appetite, your lack of sleep.
6. Get your medicine. Finally, you can feel like a halfway decent human being for the first time in months. The strains at the dispensaries are bred to help with specific ailments. It isn’t just “getting high” and loafing around the house. A recent state poll showed most people use it before bed, or before meals (which, if you have nausea or a dampened appetite makes a lot of sense.)
As a patient, I have to guard myself against discrimination. I had one doctor that wouldn’t even prescribe me the marinol because he felt that the pharmacists treated his patients too poorly after filling that prescription (To be clear, I have a bunch of doctors. I didn’t doctor-hop until I found one that would give me drugs, I just asked my GP how they felt and the basically said “fuck those pharmacists”).
I am sure I am forgetting something, but I hope this gives people a little insight into what it is like to be someone with a chronic (and at times debilitating illness.) Living with it daily, and all we ask is for some respite without being judged or harassed.