When the spinal blocks weren't helping much, we became less conservative with treatment options and we went to more invasive with getting my spinal cord stimulators. They brought immense relief and they were the only treatment I needed for more than six months. Then I started working at a more physical job and my pain was significantly increasing. One thing with my stimulators and my job is that I do direct patient care so I can't use my upper stimulator while I am at work because it gives me weakness in my hands which makes taking care of my patients pretty difficult. I use my lower stimulator at work but not my upper. So I was struggling. We did a few more spinal blocks but my pain doctor decided he didn't want to do anymore of them because of side effects I was having. So we began trying to discuss if there were other treatment options available.
A treatment option that is becoming more popular for CRPS is called Ketamine infusions. We discussed these and what he thought about them. Ketamine is not covered by insurance and it involves a few nights in the hospital during the course of the infusion as well as repeat visits for it to be most effective. We did the math and it would be about $5,000 a session. Which is just not feasible. My pain doctor said that the thing he doesn't like about Ketamine is that its main ingredient is PCP, a street drug that has very negative affects on people. People who take PCP on the street die very regularly because it makes them think they can fly. Thinking they can fly, they will jump off buildings and ultimately die. So even if Ketamine was covered by insurance, he didn't think that is a super safe treatment option.
We discussed how they used to put pumps into patients that were filled with medications so that they could constantly have medications pumped into them. This didn't stay popular long and isn't done a whole bunch in the U.S. anymore. We couldn't come up with any other treatment options that we hadn't had tried/ My pain doctor tried to convince me to get a different job that was easier on my body. He did it really nicely and by beating around the bush a little bit because he knows how stubborn I am. I told him that I am too young to have to worry about finding a job that is "easier on my body."
My mom was with at the appointment and had asked him questions about different treatment options she had researched. After hearing that most of them weren't good options for me, she asked him about Minnesota's new law in regards to intractable pain.
As of August 1st, 2016 Minnesota legalized Medicinal Cannabis for intractable pain. This meant that as of August 1st it was legal for people with chronic pain could use medicinal marijuana to treat their pain. My pain doctor kind of joked at first saying, "I grew up in the 60's and 70's, I am all about that option." We all laughed a bit and then he went on to tell us of all of the positive results people have had as far as medicinal marijuana helping control their pain. So he referred us to a doctor in the cities that specializes in this.
For people who don't know me, you should know that I was always a "good girl." I was always afraid of getting in trouble so I never smoked, drank, or tried any type of drugs growing up. I still haven't smoked or tried drugs and my version of drinking is a glass of wine or a cocktail every now and then. So the idea of using a "drug" to treat my pain made me feel so guilty. The thought of using something that is illegal for most people as a treatment option terrified me. So I met with the pain management doctor who specialized in this new treatment option and discussed what the treatment consisted of. My mom and fiance went with to the appointment so I had other sets of ears to kind of take it all in. I remember just walking into the clinic and feeling this sense that I was doing something wrong. The meeting with the doctor went really well. He discussed different ways that it is used (pills, oils, vapor, etc.) and told us what he has seen as far as results. He told us about a young man who suffers from CRPS, who he actually had put a spinal cord stimulator in, who had started using marijuana before it was legal in Minnesota in efforts to treat his pain. The doctor said that this patient was on two different, VERY strong pain medications, all day every day since he was diagnosed. Since starting the medicinal marijuana, this patient is off of all his prescription pain medications and is living a fairly normal life. That brought a lot of hope to us about its effectiveness for me.
So he got me registered with the Minnesota Department of Health and had us make an appointment at a dispensary to get a prescription. I was really hesitant as far as using this as a treatment option and as far as work and school go. But I was getting to a point that ALL I did when I wasn't working was sleep. I would wake up at 9:00 am and would nap from about 10 am to noon or 1 pm. I would get ready for work, work, and then come home and sleep. I was exhausted. So I was trying to keep an open mind.
Our experience at the dispensary was something I NEVER imagined I would go through. To get into the building you have to call to have them buzz you in. When you get to their office inside the building, you slide your ID under a small crack in a window so they can verify you're a patient. They buzz you into the office and then you wait to meet with a doctor/ pharmacist. When the doctor met with us, we went into a consult room and discussed what he thought I would benefit most from. He thought that a pill in the morning and at night and then using the vapor during the day would provide the most coverage for me. So we settled on that. But, it gets more in depth.
Marijuana has two main active ingredients: THC and CBD. THC is the prominent ingredient that people think of when they think of marijuana. THC is the ingredient that gets people "high" when they smoke weed. It is used as a very effective pain reliever. CBD is an ingredient that is an anti-inflammatory and used to relax people. THC is used often for nerve pain and other types of pain such as pain caused by cancer or glaucoma. CBD is often used for people who have seizures. So they have different combinations of the two ingredients for different illnesses, as we all wouldn't benefit from the same combination of the drugs. So they have a few that are high in THC with little CBD, ones that are equal parts of THC and CBD and then ones that are mostly CBD with little THC.
So we chose two different combinations for me to start with and then we can always change them based on what works and doesn't work. I use one that is equal THC and CBD in the morning and one with higher THC at night. After we chose what I was going to try, we waited for the pharmacist to fill the prescription. While we were waiting, a man was in the lobby yelling, swearing, and going off on the staff of the dispensary about giving him "bad weed" which is near impossible through a dispensary based on the way they pull the plant apart. This guy was scary. He had tear drop tattoos and he was out of control. I was sitting there watching this and looked at my mom and Paul and I was like, "What in the world am I getting into?!"
The police had to come and make sure he left the property. As I watched these cops at the dispensary, all I could think about was how counter-intuitive this had to be for them. They are here, protecting a place that gives people a drug that is illegal on the streets. The whole thing was just crazy to watch. When I was still questioning what in the world I was getting into, a man who was blind walked in. He began talking about how he was a priest who has benefited immensely from this medication. It was just a totally crazy situation. I just giggle and shake my head when I am thinking back to this whole thing.
There are some hesitations that I still have. This is legal for me and I can't get arrested or in trouble for having this on me, etc. BUT I will test positive for THC if someone were to drug test me. Working in healthcare, it is a common thing to be drug tested upon employment or at any time during employment. Because this whole thing is so new, most companies don't have policies in place for how they go about deciding if it should impact employment. I obviously don't use it before work or during it. but I would still test positive. The thing most people don't know is that this form of marijuana does NOT give you a high. It feels to me like taking ibuprofen except that the pain relief is so much better.
I started using this on Saturday and it has been absolutely life changing. I have had almost four pretty painless days. I didn't have any flare-ups until about 9 pm last night at work and it was just a tiny one. Definitely tolerable. So I remain hopeful that this is a treatment option that will work very well for me and others who are going through this. This treatment option could truly change my life. There are a couple downsides to this though. None of it is covered by insurances so it can cost over $200 a month, but after talking with my family about this part, we determined we could make it work because it will be worth the normalcy. Another downside is perception of me. I am sure people will struggle with, or have issues with me resorting to this as a way to control my pain, but I do hope that when they see how it has helped me, they will become more receptive to it. And then there is employment. As this becomes more legal for different people, they will have to begin to put policies in place. I am sure some people will have a difficult time with this but I hope they realize that alcohol is legal, and people drink it often, and would probably test positive for alcohol if they drink it frequently, even if they aren't drunk at work.
I still struggle with the idea that I am using a "drug" to treat my pain. Paul said it really nicely when I expressed my concern about this. He said, "The stuff that you take now, that doesn't help, is poison. It is medicine that is MADE by man. This is a plant, it is natural, and probably much better than the stuff you are already putting in your body." It is crazy to me that all of these medicines for depression, anxiety, pain, seizures, etc. are FDA approved and they are full of things that are bad for your body and this natural plant is not. But, as the doctor told us, "This won't be FDA approved because the pharmaceutical companies would lose A LOT of money."
I am looking at the positives that I have experienced so far and I am keeping an open mind about it all.