Medical cannabis saved my life literally!
Location: United States
- Back & Neck Problems
- Brain Injury
- Chronic Pain
- Eating Disorders
- Irritable Bowel Syndrome
- Post-Traumatic Stress Disorder (PTSD)
- Other (please specify below)
The main condition I suffered from that made it impossible to function because the pain was so bad that I wanted to cut my feet off thinking that would be helpful, is idiopathic peripheral neuropathy. A lot of people are familiar with diabetic peripheral neuropathy, but the neuropathy I have has no known cause. It's not due to a vascular issue because my blood flow to my extremities is strong. It also started in 2006 long before I had a diabetes diagnosis. I also had a brain tumor that I didn't know I had. That was removed in 2016 and that's when it was discovered that I have an extremely thin dura mater and they said that I was made that way. I've been dealing with a cerebral spinal fluid leak ever since. I will explain in my story how all of this fits in and how I wound up using cannabis and how it saved my life.
- American Indian or Alaska Native
- White or Caucasian
- Other (please specify)
Additional Ethnic Background Info
My ethnicity is mostly northern European. But I had genetic testing done and discovered that I also have a small amount of Native American and North African from my mother's side. Also, four percent of my DNA is neanderthal. You are including ethnicity to see how different ethnic groups respond to the medical use of cannabis. Not many people talk about Neanderthal DNA, but you never know, that could play a role in how medical cannabis affects people, and you may find that out in the future.
Overall health, well-being and quality of life before medical cannabis
My quality of life sucked! I would go to bed at night banging my feet against my mattress because the pain was so bad. The neuropathic pain had already spread to other parts of my body but it was worse in my feet. Incidentally that’s where it started in 2006. I would be crying, some nights I would be screaming and I’m surprised I didn’t get evicted from my apartment for disturbing other neighbors. My whole medical team was at a loss of what to do for me. My neurolgist totally gave up on me, because she said there was nothing else she could do for me. My therapist started asking me if I was going to take my life. I assured him that I wasn’t at that point and why was he asking me that? And he told me that anyone who was in the amount of severe pain that I was in is at risk for taking their own life, so he had to ask me that at every visit. I couldn’t do any physical activity without excruciating pain, so that affected the rest of my physical health and made my depression and anxiety a lot worse. I pretty much was just waiting to die, it was that bad.
Additional info about this time in patient's life
I think cannabis should be taken off of schedule 1. As I mentioned earlier I have a background in Pharmacy, and cannabis does not fit the profile for a schedule 1 drug. A schedule 1 drug means it has no medical benefits. There is plenty of evidence out there now that it has medical benefits for a whole host of ailments. Granted it doesn't work for everything, and sometimes it can make some conditions worse, but overall it has been helping so many people in so many ways. So what would I tell myself? That I should have tried it a long, long time ago and got pain relief before it got so bad that I wanted to die. And I'm an advocate for the benefits of medical cannabis and when I run into people who still have this taboo idea about it I'm very open about how much it is helping. And I also asked other people who seem to have problems getting relief if they've tried it. Or if they'd be willing to try it. And if they say they're willing to try it I suggest they talk to their doctor about it. But I also let people know it's a trial-and-error thing to find out what works best for you as an individual. So you have to be patient. Too many people give up thinking it doesn't work when they haven't really tried enough different strains or methods to take it to find something that works. When I talked to my Med provider earlier this week we talked about that. And I told her to me it kind of is like with psych drugs. That's all trial and error too. But I do believe cannabis is a lot safer the most psych drugs that are on the market.
Overall quality of life before being introduced to medical cannabis: 1
Path to cannabis
The first time medical cannabis came into a conversation with one of my doctors, it was with my neurologist. Nothing she was doing for me was working and I broached the subject with her in 2015. She did not want to go that route because she told me there was not enough data to support that it worked for neuropathic pain. So I continued to suffer. By the time 2016 rolled around, and even before I was diagnosed with a brain tumor in July of that year, my therapist and my Med provider we’re starting to come on board with me at least trying cannabis. I mentioned in an earlier section that after my brain tumor was removed, I started going to pain management at Dartmouth-Hitchcock Medical Center. My doctor there wanted me to start cannabis right away. But it was cost-prohibitive for me. I am on a fixed income due to my disability. But after a few months of trying other things he certified me and I got my card in June of 2017. That’s when I started using therapeutic cannabis. I don’t smoke it for a number of reasons, one of which is I’m a former smoker and I find smoking it too harsh on my lungs. I also live in a non-smoking community. So I originally tried chocolate bars and tinctures. It took a lot of trial-and-error for me to figure out what works best for my pain. There’s a lot of hype over CBD right now, but CBD doesn’t do anything for me. Even though I was originally certified for neuropathic pain, there were a lot of other added benefits. Once I figured out that a THC hybrid sublingual tincture works best for me, I discovered that it also stimulated my appetite. I have an eating disorder and would just not eat all day long and then eat at night. My dietitian didn’t like that because it wreaks havoc on blood sugar levels. Once the pain was under control and I was able to do things again. It also stimulated my appetite to the point where I was able to eat at regular intervals and stop when I felt full, and I was able to lose weight. I lost over 50 pounds since I started using cannabis. The other thing that was an added bonus is that I was being weaned off of Seroquel because it caused me to have really high blood sugar levels so I had to come off of it. My Med provider, PCP, and therapist were all concerned that I would have severe depression coming off of that. Well, once I started using the Cannabis I was able to wean off of the Seroquel without any depressive episodes at all! It has also helped my anxiety and PTSD in a way that no prescription medication has been able to do. But I have to reiterate here, that it’s a THC hybrid that works for me. CBD does nothing for me at all. CBD doesn’t help neuropathic pain. THC does. I now have a designated caregiver who’s licensed in my state and she’s helping me to be able to find the exact combination of strains that we can replicate because my dispensary doesn’t always put the same thing in the tinctures. Before I became disabled I worked in long-term care pharmacy for a long time. And one of the things I like about the tinctures is that I can microdose them so I know exactly how much I’m getting. A lot of people don’t really care about that, but with my background, I do. Now, I have to say that on occasion I will use a vape pen if I’m having an acute anxiety issue, or my nausea from my CSF leak is really bad, because that is fast acting and will calm me down a lot faster than it would take for the tinctures to start to work.
I tried smoking and it irritates my lungs too much. I have mild COPD from smoking for 30 years even though I quit in 2008. I tried chocolate bars which were too hard to dose in smaller amounts than 10mg. I tried patches but I'm allergic to the adhesive. I tried lozenges which didn't really do anything. From the get-go I was using tinctures so I could microdose them. And I eventually added in freedom pen cartridges which I only use rarely now for acute episodes of anxiety or nausea. I don't need them if I can use my tinctures all day long from the time I wake up. But it's too expensive for me to do that so I spend most of for the first part of my day in pain and save my cannabis for the afternoon and evening when the pain has always been worse. I was able to start hiking again once the pain was under control, and I do take tinctures with me when I'm hiking to control the pain during a hike. My designated caregiver has been able to make an infused candy, and that works for me also and I don't have to use a lot of it so it doesn't affect my blood sugar. I recently decided to try CBD oil because I was going out of state and couldn't take my cannabis with me. That's how I found out it doesn't really do anything for me. It relaxes me a little so I will add that to a cup of tea at night along with a dose of THC tincture and drink that with my tea before bed. And that controls my pain through the night and allows me to sleep the whole night.
How Cannabis has had an impact on patient's day to day life
I have definitely experience notable and significant Lifestyle Changes since I was able to use cannabis! Some of this I mentioned in earlier comments. I am able to sleep at night. To me sleep is sacred. If I don't get enough sleep I can't function. And then there's the pain issue. I was in so much pain I was just waiting to die so the pain would end. I wasn't at the point of taking my life but I was at the point where I just didn't want to wake up anymore. Cannabis got my neuropathic pain under control to the point where I was able to get out and do things that I used to like to do and couldn't do anymore. Mainly outdoor activities like hiking. I also learned how to Snowshoe so I could still be in the woods in the winter time. I also learned how to hike with micro spikes on. I had long given up on a bucket list goal of climbing Mount Washington because of the pain the neuropathy was causing. But that goal has returned and I have been conditioning myself to make that climb. I have been able to accomplish a number of hiking achievement programs because my pain has gone from off the scale at like a 15 to an average of about a four. So I'm not completely out of pain, but it is controlled to the point where I can function. I am able to keep up with my housekeeping. I am not stuck in bed half of the time. I'm able to actually live my life again. I am still disabled because of my neuropathy. I have balance problems and can't feel the bottom of my feet so I have to walk with a cane. So how can I hike? I have to use poles. I use the poles balance, I use the poles to feel the ground with my arms since I can't feel the ground with my feet, and I rely on a lot of upper body strength when it comes to hiking up or down hills and mountains. I have to dig my poles into the ground and pull myself up, or dig my poles into the ground and put most of my body weight into my arms coming down. The other way the Cannabis has helped with allowing me to hike is how well it controls my anxiety. I would be intimidated in the past by rock scrambles or a lot of things on a to hike like stream Crossings. I'm not intimidated by those things anymore. The Cannabis keeps my anxiety in check so that I don't get it in my head that I can't do something. Don't get me wrong, I do have limits and it's not like I'm going to ever be able to climb Mount Everest or anything, but I've come a long way in the last couple of years because I couldn't walk to my local library and back before. And that's maybe a tenth of a mile away. Because of my cerebral spinal fluid leak and the pressure I get in my head from that, I still have days that I can't get out of bed. But at least the nausea is controlled from the cannabis so I don't feel like I'm going to throw up all day on days like that. I have to take each day as it comes because I have so many conditions that I'm dealing with. But cannabis has greatly improved my quality of life compared to what it used to be.
Under Doctor's Supervision?
Additional doctor supervision information
I live in a state where you have to have a cannabis card and you have to go to a dispensary. And to get a cannabis card you have to be certified by a physician that that you have had a relationship with for at least 3 months. But I have a whole medical team because I have so many health problems. And other than my neurologist giving up on me, everyone else on my medical team is extremely supportive of my use of cannabis and they see me as a poster child of how well it can work for someone. Because my case has been so successful, it has actually changed the minds of people in my PCP's office about the benefits of it. They weren't on board with certifying patients for it when I started using it, that's why I had to go all the way to another part of the state. But after seeing how well it worked for me, they started certifying patients. And now I don't have to travel that far to be recertified because my pcp's office is now on board with recertifying me when I need to be recertified every year.
Additional info about discontinued medication
I completely stopped using Seroquel because I didn't really work anyway. I can't take anti-depressants and I had to rely heavily on cognitive behavioral therapy when I would have a depressive episode. So they put me on Seroquel. Now I don't take it and the Cannabis really helps with my depression. I was also able to cut my anxiety medication in half. I was able to come off of one of my IBS medications. And my eventual goal is to be able to not have to take diabetes medication anymore. My blood pressure is better controlled, my blood sugar is better controlled and other than Excedrin Migraine for the swelling in my brain, I don't take anywhere near the amount of over-the-counter pain medications that I used to do.
Cannabis has changed the use of other controlled substances
Other lifestyle changes adopted along with medical Cannabis
Additional info about lifestyle changes
One of the things my primary care physician was concerned about with the use of cannabis was that I would gain a lot of weight. She told me it was going to make me hungry. I told her I knew was going to make me hungry but I also knew that it made anything taste good. So yes, I've had a lot of dietary changes. I used to be addicted to Canada Dry Ginger Ale and I don't drink that anymore except right after a surgery. And I'm coming up for a third brain surgery in just over a week. I don't crave sugar at all anymore. I get very creative in the kitchen in making healthy things to eat. So I'm eating things that are better for me even though I'm eating more frequently. I'm also not eating as much at one time. So all of that has helped me lose weight. I already talked about how I'm able to hike now which is something I used to love to do before I became disabled. I have better sleep hygiene now. And my attitude towards life in general has greatly improved. I understand with my health issues I don't have the same amount of time as an average person would. Then again nobody really knows how much time they have. But because it has helped my depression, anxiety and PTSD as well as my pain, I'm able to face each day as if it were my last and I don't take it for granted. I try to seize whatever opportunity that day gives me. So it has turned me into a much more positive person also.
Additional info about medical Cannabis experience
I titled my story "Medical Cannabis Saved My Life, Literally." And it has! If you've read my story to this point you will have seen how much it has saved my life. I don't ever want to go back to living and that level of pain again, so I've become very active in patient advocacy for medical cannabis, safe access for cannabis patients (not just in my state but Nationwide), and I'm constantly writing letters to my representative and staying abreast of what's going on in Washington DC in regards to taking it off Schedule 1. I also chimed in with the FDA when they were taking comments from patients, caregivers, attorneys and physicians when their stance on it before the FDA went before the World Health Organization. I don't know why the United States is so backwards in this issue. But it has to change, because as patient I believe I have a constitutional right to use a medication that works so well for me, and others, that it literally saved my life. And I am at a point where I'm ready to testify before Congress if it comes to that. Because I honestly believe I wouldn't be here writing this if I didn't take the chance and see if cannabis could help me.
Overall quality of life after being introduced to medical cannabis: 9