Rod, a 41 year-old husband and father of three, is like many Americans who face uncertain futures with epilepsy. The doctor doesn’t have any medication he can prescribe for Rod and the only medicine that DOES help, cannabis, is illegal where he lives. When he does have access to medicine, cannabis oil is simply too expensive and too diffcult to get. Please tell your politicians and policy makers about Rod and the thousands of Americans like him who need medical cannabis in order to survive.
Here is Rod’s story…
In 2005 my life was good! I was living the American dream, I had a good blue collar job in a trade and was continuing to go to school for it. I had 2 beautiful little girls and my much anticipated baby boy was on his way.
During that summer I started to experience weird sensations at work. It would start in my stomach and I would feel like I was lifting up out of my body. That fall, about a week after my son was born, I had my first seizure that we know of. I had worked all day and attended classes afterwards and was finally home eating dinner. My wife says that I just kind of froze up and then was tired, set my plate down and went to sleep. I have no memory of this and at the time my wife didn’t think much of it.
A newborn in the house, working full time and going to school would make anyone tired. Well a few days after Thanksgiving it happened again and this time my wife knew something was wrong when I didn’t know what day it was or where I was for about 30 minutes. The next 8 months were a blur of seizures, ER visits, doctor appointments and test. Finally in late May after my seizures had progressed to full Tonic Clonic seizures, I found a good doctor that specialized in Epilepsy. He put me in the hospital and finally had me diagnosed with Epilepsy in just a few hours.
The next year was a blur of more appointments, tests and trying different epilepsy medications. None of the medications helped (they did keep my seizures down to just partial and not full tonic clonic seizures) and during one seizure I had a life threatening allergic reaction. My seizures were completely random. I could go a week without one, have one everyday for a week or even have two or three a day. My wife had to watch me closer than she watched our young children. Somehow she always managed to be close-by anytime I had a seizure while I was standing, saving me from a number of nasty falls.
This was our life now
I couldn’t work anymore and short-term disability from my employer only lasted 6 months. My wife, who had been a stay at home mom when this all started, couldn’t get a job that would pay enough to pay someone to watch our three children and myself and still leave enough to pay our bills. I applied for social security disability but it would be four very long years before it would be approved.
When none of the medications were having much impact on my seizures, my doctor started talking about brain surgery, well two brain surgeries actually. There was a lot of pretesting because they had to make sure my seizures were all coming from the same area of the brain and that is was NOT the dominate side of my brain. I had surgery in August of 2007.
The first surgery was to place electrodes directly on and inside my brain so they could pinpoint the exact location of the seizures, and then the second surgery wouldn’t take place until after I had several seizures that they could map, then they would remove the small piece of my brain the seizures were coming from. It took six days for me to have a seizure, and when I finally did have one, not only did it come from the opposite side of the brain as the countless seizures they had already recorded in pretesting but it was also my dominate side. My doctor was in tears when he came to tell my wife that all of this had been for nothing because if they removed what they had just mapped I stood the chance of loosing memory or speech and I would still have seizures from the other side of the brain.
Doctors performed the second surgery only to remove the electrodes from my brain and sent me home fully expecting my seizures to continue. Only my seizures didn’t continue! I had three seizures about six months after surgery, but that was attributed to being on a generic form of one of my meds. I was put back on the name-brand medication and the seizures stopped. Eventually I was cleared to work and drive again! Things were looking up. I still didn’t have Social Security Disability, but with my seizures gone, my wife had gotten a part time job and now I could start looking for a job too.
Well, this was about the time the economy tanked and here I was with a three year hole on my resume. It took me over a year to find a job. The first place that hired me let me go just before my 90 days was up. I can’t prove it, but I believe because they had learned about my epilepsy. Thankfully, I was able to find another job quickly this time. Then Social Security finally decided to approve me for a closed period of Disability for the time that I was actively having seizures.
Fast forward four years, things had been good, I was working, we had bought a much needed bigger house in a better neighborhood and we were taking care of my mother who had health problems of her own and could no longer live alone. But everything was not perfect. I still had memory issues and headaches and no one could tell me if they were side effects from the medication or something else, but I was living and working and driving.
A week before Christmas 2012 I called my wife from the kitchen of our old house (I still had a key and her sister now lived there) totally confused because I didn’t know how I had gotten there or why everything in the house looked different. The last memory I had was clocking out at work over an hour before that. It was pretty obvious that my seizures were back.
My doctors made a few changes to my meds and ran a few tests but at this point there wasn’t a whole lot they could do for me. Despite continuing to have daily headaches I had to completely stop taking the large doses of prescription pain killers because they were starting to damage my liver. I had nerves burned in my neck, which helped with the headaches but didn’t completely take them away. The seizures were not quite as severe as before surgery but I couldn’t work or drive or really be depended on to remember or complete any task, but I could spend time with my kids and do some things around the house.
I no longer trust myself to work on vehicles after I was simply rotating the tires on my niece’s van and “forgot” to tighten 5 of 6 lug nuts on one tire. Thankfully, she noticed something wrong and had someone else look at it before her tire came flying off with her babies in the van. I woke up one morning with teeth hurting and my CPAP machine on the floor. When I went to the dentist, she said I had broken 2 teeth, the only explanation was that I had a seizure in my sleep. Our insurance that my wife has through her job wouldn’t completely cover repairing those teeth. With my family back to just one part-time income we couldn’t afford to have them fixed.
Around this time my mother’s health problems became severe and my wife was busy taking care of her, which left me having to take care of our kids. Thankfully they were old enough to be fairly self sufficient. On many days, it was all I could handle to make sure the kids had dinner, did their homework and made it to bed at a decent time. In the last year, I also started having digestive problems and the conclusion is that from time to time my digestive system slows down or stops, sometimes for several days at a time. This is very uncomfortable and painful and I continually burp the most awful smell that can clear a room. They told me they have no treatment for this, so I started doing some research on alternative medicines and started to learn about all the things that cannabis and especially cannabis oil can do.
I had never thought cannabis was as bad as they said but that it was only good for getting high. I had no idea about all the good things it could do! Eventually I decided I needed to try some cannabis, but that was a task easier said than done in the state that I live in. I did manage, at great risk to myself and family, to get a three month supply for myself and started taking it as a medicine. The very first thing I noticed was the profound pain relief. It was like I could breath again and a large weight of pain had been lifted off my shoulders after years of dealing with it.
Within a week or two I was noticing that I could think more clearly, focus better, remember things better, generally felt better, and my wife noticed a huge improvement in my overall attitude and mood. Because of the laws in my state, I couldn’t work with my doctors to come off any meds I may not have needed anymore, so I had to do the best I could on my own. I am diabetic and that had also been out of control for several years. As I started using cannabis my sugar dropped, I took less insulin and was soon taking none at all. I reduced some of my blood pressure meds because I could keep an eye on that myself also. I was having very few, if any, seizures. Since they came back they were even more erratic than before and I usually don’t know I have had one unless someone sees me have it, or there is a clue to having lost time. I was noticing none of this and neither was my wife. My headaches were almost non-existent. I wasn’t having any digestive issues. I was overweight and had battled appetite control my whole life and now I was only hungry when I needed to eat and began loosing weight. I was feeling better than I had felt in many years on every level. When I had blood work done near the end of my three month supply of cannabis, my A1C (3 month blood sugar level) had dropped significantly, in fact it was nearing the normal range. Of course I couldn’t tell my doctor that I hadn’t even been taking my insulin.
A treatment out of reach
Due to the high cost of cannabis oil and the fact that I can’t work or drive, I have not been able to afford to routinely stay on the oil. After that brief reprieve from so many ailments it is even harder to tolerate my ailments when I don’t have any oil. How is it possible that our government can outlaw this natural medicine from the American people? A plant than can do so much good for so many!
In researching cannabis, you come across many stories of children helped by cannabis oil and people of all ages with cancer going completely away after starting the oil. Why should I not be able to work with my doctor, and openly talk about it with him without fear of my doctor or myself going to prison. Why should I have to worry about loosing my kids to a corrupt system if the wrong person learns I was using a natural substance that our government deems illegal?
My story is one of many as to why America needs to stand up to the politicians and pharmaceutical companies that have brain washed us that their medications are the only things that can help us, when in reality they are hurting most of us in one way or another and demand that cannabis be made legal in all forms. Let doctors learn about the benefits it can provide to many of their patients and learn how to help their patients find the amount that suits their needs.
I’m probably dreaming, but if insurance companies are going to pay for medications and chemotherapy, then people should have the choice to choose cannabis instead and have their insurance that they pay for, cover it! There is so much reform needed at the state and federal level to get these laws changed! Thank you for reading my story and please consider voting to make cannabis leagal at the state and federal level!
This story really gets to me, as I have suffered many of the same parallels with my own illness over the last decade or more. The lost jobs, the 7 year ongoing battle with SSDI that has been a nightmare. I am the same age as this fella. And for my illness as well, Cyclic Vomiting Syndrome, the only thing that has ever worked, has been Cannabis. Fortunately, I have always lived on the west coast where access was easy for the last 30 years, but many others live in really conservative parts of the country where safe access is difficult. It is time to remove the antiquated prohibition on marijuana that serves no purpose, and causes much more harm than good.
I live in a state that had legalized medical marijuana. I have fibromyalgia, diabetes, digestive issues, migraine headaches, nerve damage, neck and back pain from a surgery and the medical marijuana did help me with the pain that i have on a daily basis. I have since been granted full disability due to being unable to work. my wife and I had to sell everything we had and move in with her son. now live in a state that is not a legalize medical marijuana state. Now I hurt so bad like I did before they legalized medical marijuana in the other state I lived in. I am on pain meds that I have been on since I was diagnosed. 6 years ago. There are times that I get so sick I can’t eat for days. I have been admitted in the hospital 6 times in the last 3 years. I hope the state I live in now will some day soon legalize medical marijuana. I would help hundreds of people. I hope that everyone gets the help you need son. W.e.
I also have epilepsy. I’ve had 7 brain surgeries, including 3 resections. I’ve tried over a dozen different anticonvulsants and even tried a neurotransmitter. Nothing helps my seizures. I was fortunate enough to be approved for SSDI on a first application. I only had to wait 7 mos from the day they received my application until approval. I’m one of the lucky ones in that regard.
I discovered that marijuana works for me when I created my own tincture by following instructions online from a website and buying the product grown by a friend of a friend. 3-4 drops sublingually doesn’t get me high and relieves the seizures. I still took my medicine as instructed. I stopped taking it, because I’m in a non mmj state and I wanted my doctor in on all my medical decisions. Of course the seizures came back. That was three years ago. I started taking a “High CBD” Hemp oil because that’s legal everywhere. Didn’t help and I could t stomach the consistency. I bit the bullet and went back to my old tincture a week ago. It’s wonderful not to have seizures!
I wish I could use it legally. I worry when I’m reevaluated for SSDI, they’ll drug test me. I bought some drug test kits. I’ve only used my mystery tincture for a week, but I tested negative using the rough guide. I don’t have the machine that breaks it down, but two lines appeared on the stick and the instructions say that’s a negative result. If they check my blood, or if I use it for longer, it might show. In another week I’ll test again, then a week later until I test positive. Then I’ll stop it until I test negative again and I know what it takes to test negative after being on it for so long.