According to The Multiple Sclerosis Foundation, over 400,000 people in the United States and about 2.5 million people around the world have MS. About 200 new cases are diagnosed each week in the United States.
In 2000, one of those diagnosed was Susan Rusinko, a mother of three active boys, and a user of medical marijuana for 14 years. Cannabis has been her medicine; the reason she is able to get to her boys sports events and be an active participant in their lives. The Fresh Toast sat down with Susan to discuss her advocacy for the plant as both a lobbyist and user.
On Being Diagnosed With MS:
“In 2000, I was officially diagnosed but I had symptoms prior to that. It first presented with an issue with my bladder. I went to my family doctor who directed me to the gynecologist who in return said this is not my deal and sent me back to my family doctor. That’s when I was diagnosed. I was first given one pill, however that spiraled into another pill for dryness. Eventually I was taking 17 different pills a day.”
On Discovering Marijuana As Medicine:
“I had small boys at this time. The year is 2000 and my oldest son was 10 and I have two identical twins age seven. So from 2000-2003 I’m taking 17 pills a day. I had done research on my own, and to be honest I did first try marijuana when I was a senior in high school. On a side note – my kids went through the DARE program and knowing what I know today I would never have sent them through the program. I told my doctor I need a medication vacation. I can’t function. I can’t make it to my kids events. He said what do you want me to do? I want you to start weening me off these medications. He asked how do you want to treat your MS? I answered with I want to try marijuana. His first thing is it’s illegal, where are you going to get it? I said I’ll take care of that. We talked through it. He emphasized not smoking it via a joint as it has carcinogens, etcetera. So, I never have. I started using a ‘dugout bat’, a one-hit.”
On Using Marijuana As An Alternative To Other Medications:
“He told me one of these medications was going to be particularly difficult to ween, and the marijuana would come in handy. And he was right. This particular medication, amitriptyline, is generally prescribed for anti-depression but works for MS patients for night time painful paresthesias. I started to ween in March and by June I still had 12 more pills which was every other day, so actually had 24 more days of this nonsense. So I called him and said I’m going cold turkey. He said don’t do it. I wish I had taken his advice. I had the worst withdrawals. Itching for five days. But let me tell you if I didn’t have the marijuana I wouldn’t have been able to get off this drug, amitriptyline. You start on a 25mg dose and all of a sudden I’m on 150mg. I had to get off, and without cannabis I would’ve lost my mind.”
On Revealing To Her Family And Friends That She Is Using Marijuana:
“This is 2003, and my husband and I chose to keep the marijuana use a secret. I come from a family of nine brothers and sisters. My sisters knew but didn’t tell my brothers. They just weren’t cool with it back in the day. In 2008, my oldest son was in 12th grade and he was doing sports and I just couldn’t keep up. I decided I finally had to tell him. We sat him down and asked for his word not to share with anybody because if somebody found out he could be taken away. That’s a terrible burden to put on him, but I had to tell him so that he knew it was my medication so I could be present. I shared it with my twins when they reached 12th grade as well. I’ll never forget asking one of my twins if it was embarrassing for him that I smoked pot, and his response was ‘you do way more embarrassing things than smoke pot mom’! The bottom line is my kids were very supportive. In 2012 I was asked to lobby for medical. I went to my 84-year-old parents and my father holding my hand asked is this going to be a gateway drug. I said yes a gateway drug to a brand new life! I told him I’ve been using this drug since 2003 and it’s only helped me. I haven’t used any other drugs. And all my family, including my parents jumped on board, even the uncool brothers.”
Related Story: The Science About Medical Marijuana And Multiple Sclerosis
On Cannabis Education:
“I had an opportunity in 2012 through Drug Policy Alliance to go to Colorado, where I was introduced to cannabis salve. I started learning more and more about the possibilities of the plant. Now my mother uses salve for her arthritis and no longer uses the other drugs that had been prescribed. In addition to the salve, I was at a seminar in New York and learned about the differences between indica, sativa and hybrids. I was with my friend who had a seizure disorder and we met a physician. He said ‘you shouldn’t be using the same brand’; she should be using the indica and you should be using the sativa during the day and a hybrid or indica at night. Through education my life changed. Sativa is my friend during the day. Now I’m watching my ratios, having a higher indica during night for a restful sleep. Here is the problem in New York; you can go to the dispensary – we have tinctures, sprays, capsules and vape pens. The ratios are inconsistent. One month I’ll go and the ratio will be 9:1 for my capsules, the next month 6:1. It’s difficult to moderate as medication when there lacks consistency. I keep saying ‘you’re politicians, not physicians. You should not be prescribing my drugs’. New York state also limits the amount of THC, no product can have more than 8%. I lobbied for this. New York has 89,000 physicians registered and only 1,023 of them are registered to write prescriptions for marijuana. It is not easy to get a medicinal card. It has to be the doctor who treats you for the condition. A group of physicians did come forward agreeing to certify patients, but it costs $450 out of pocket as insurance covers nothing.”
On Lobbying For Medical Marijuana:
“I lobbied for this bill for two years of my life. Going back and forth from Auburn where I live to the capitol, a five-hour drive to battle for this. I kept saying, I’ll be damned if I’m going to find another doctor to get this recommendation. So I went to the MS clinic at Strong Hospital affiliated with University of Rochester near our home. I finally got my doctor to write a recommendation. Every provider in our practice is now certified to write recommendations. I waited from January 2016 to July 2016 before I finally got my papers. And as of this week nurse practitioners are able to prescribe, which is a huge step.”
On Being An Advocate:
“Every senator in Albany knows I was getting my product illegally. I even went to a few local officers I know asking if I needed to be on notice. They responded ‘just relax lady’, you’re fine. You’re not on any list. New York is an oil-only state, so to this day I continue to use flower illegally. It is public knowledge I use marijuana as medication. This sentiment has encouraged me to be vocal as a lobbyist and advocate, and to enlighten folks to get rid of that illicit Woodstock joint stoner mentality. Because that’s not what this is. ”
Today, Susan believes cannabis has been what has helped her stay healthy 17 years later after her MS diagnosis. Marijuana is what helps her keep moving every single day, whether it’s a little or a lot, which is key for any MS patient; to keep moving.