MS is a Losing Game

One Step Forward, Two Steps Back

     "So just to be clear, your firing me?" I ask her.

     "I'm not firing you, but yes, I can no longer sponsor you."

     It really isn't helping that I am vaguely high when my 12 step sponsor drops the bomb she feels she cannot sponsor me in sobriety anymore. Just as she tells me this, I can't help but see a text that comes onto her phone, her ride is going to be around 30 minutes late. Well, this is awkward. (Pro Tip: When breaking up with anyone, bring own car.)

     Now the heartbreak I'm feeling is lessened by pity. 

     If your wondering what all of this has to do with medical marijuana, it's simple. There is no pot in AA. Well, there isn't supposed to be anyway, but we do have a phrase called the "marijuana maintenance program". It's not a club you want to be in if you want your fellow AAyers to respect your "sobriety". However, if something hangs around long enough, we tend to name it and if it has a name, I'm not the first. Apparently, for all of the right reasons, I am now a member of that club.


     I have comfortably cut down on my antiseizure medication by 40%. This is huge and this is the "big one" I was hoping for. This horrible yet ridiculously effective pharmaceutical has been simultaneously saving my life and ruining my health. The antiseizure medication keeps my left arm working. Without it, all of my arm and neck muscles on my left side fire at the same time. It's a painful and debilitating symptom. The medication is also painful and debilitating, just less so. At some point, the medical marijuana began taking over the role of my Tegretol and  I've cut back to 60% of my prescribed dose. I hope to be down from 5 doses a day to one dose in a few months, all thanks to the liquid "mary jane". 

     I feel better. My head is the clearest it has been for awhile. I feel actual happiness most of the time. I've got my marijuana dosing down too. I haven't had any accidental highs in sometime. (Until the last few days. That's a story for later.) Still, most nights, my head buzzes with a thickness I can't seem to overcome, but I can comfortably relax. Sometimes, like last night, I can even pitch in and help Brian around the house. My anxiety is better, the idea that has plagued me since I was a child "the Universe is out to short change you" has gone, along with my constant headaches and nausea. 

     Even little things are changing. I can fall asleep when I want to. The tendency I have to think things ad nauseam has vanished. My monkey mind has been given a few bananas. I'm even losing a few pounds. So much for the munchies. I was really prepared for that too. I was ready with lots of healthy snacks so when the ganja spell took me to the cupboard, I was prepared for battle.

     I really am feeling like I finally am headed in the right direction. 


Back - Step One   

     "You have Post Herpetic Neuralgia with complications from your MS."

     The nice lady doctor, with her nice suburban shoulder length brown hair, is looking at me directly. She's a back pain specialist and the eighth medical professional I've seen about the medieval spike that has  been piercing my spine since getting shingles over Christmas. I finally have a diagnosis that I can work with and the relief I feel seems to emanate off of me. This neuralgia is typically not permanent. 

     My next visit is to my hipster bearded, button up wearing, ginger haired GP. He, not my MS neurologists, not my endocrinologist, not my orthopedic surgeons, not my physical therapist, and not even my pain doctor, is in charge of seeing me through this diagnosis.

     "Ok," he says through his even white teeth and genuine smile, "When you take your Tylenol 3 (codeine) if you can I want you to take your higher THC marijuana. Next month we are going to want to come off of the codeine and be just on the marijuana."

     (Yes! That's going to be two prescriptions down.)

     "Hey doc," I say through my messy hair and what I hope is a smile but really probably is a grimace, "Could you check my ear and throat? I haven't been feeling the best today."

     It's true. I have been unusually tired and achy. My MS neurologist had told me a few days before he thinks I have some type of virus. It's been my experience, and others of my ilk, that people with MS often don't get sick. Ever since my diagnosis I feel like I could walk through a hospital ward of Plague and be safe. The reason for it isn't so great. I have an extremely overactive immune system. One that got so bored it started eating my brain. However, when we do get sick, we get really sick and our MS symptoms flare.

     Doc looks me over and declares me healthy but by the time I get home I can't turn my head. I up my MM (medical marijuana) and it does help, but I'm hurting everywhere. I'm starting to wake up in the middle of the night very sick and very much in pain. I feel very blessed to reach for my MM and be back asleep, feeling much relieved, in a few hours. 

     However, I can't go to work on THC. Luckily, I have a very effective MM called CBD, that doesn't get me high I can take right before I go to work. I have to be careful with that too. As I was leaving for work the other day I kissed my husband goodbye. Brian called out to me,



   "You had better use your breath spray. You have marijuana breath!"

Step 2

   Two days after my visit with my GP, I run out of MM. So many of you have been so kind as to keep supporting me financially through this time when I need love, money, and someone to help me clean the Guinea pig cages. I almost have enough to buy one months supply of MM. I do the math, my MM is going to continue to cost almost $600 every 40 days.

   After my latest trip to the MS clinic, I stop by a different dispensary and discover their MM is very affordable! Why? Well, the marijuana pharmacist explains, each pharmacy makes their own blends and theirs is 1/10th as strong as the oils I have been taking. What that means is I would have to buy ten bottles to equal just one from the other pharmacy. 

     I explain to this very nice ruby haired, rubenesque woman that I'm having trouble affording my MM and I'm wondering if I can buy high THC oil and mix it with a quality full-spectrum CBD. The CBD, marijuana oil from industrial hemp, is much cheaper over the counter, even the good stuff, than it is at the dispensary. She smiles and says a lot of people do just that to save money. It's perfectly legal.

     I return to my regular dispensary and I buy just the THC oil. I think I have it titrated correctly, but I don't have it perfected. My AA sponsor is going to be arriving in town in less than 24 hours and I'm getting a buzz from my MM. I think it's fine. Even before I started MM, many of my prescriptions would get me high as a kite. I've learned to be around sober people without a clear head. It was a lovely combination of embarrassment and shame at first. Fortunately, as with all things, we acclimate. 

    My AA sponsor lives in Montana and I only get to see her about once a year, though we talk on the phone at least once a week. I talk to her about everything in my life and she helps me through things and celebrates things with me. I sponsor women in AA in the same roll. I know I can tell her everything, even the ugly truths (especially the ugly truths). She has walked me through the twelve steps and has been with me nearly all of the eight years of my sobriety.

    She's here for an AA retreat that my sobriety sisters have organized. I was supposed to help, but I have been too sick to go to the extra meetings and even now I'm too sick to go with her. This may be my only chance to see her this year and I can't wait. 

     My sponsor comes in and she looks amazing. She's in her sixties but looks a decade or more younger with a young woman's figure and shoulder length blonde hair. Maybe you have had a breakup after trying a long distance relationship, I never have. I can sense something is a little off as I show her what we have done to the house and the new pets we have acquired since she had last been by, years ago. I don't see what's coming.

     After the proper niceties, she and I settle down and before anything else happens I see the stress in her face as it pulls tight and her head tips up in a pleading gesture. 

     "This isn't working, wouldn't you agree?"

     And just like that, a lovely (but scary) combination of sickness and pot, someone I love like a parent is gone. I have heard again and again that MS will take away most of the things you hold dear. My heart is broken, but not enough to go back to pharmaceuticals. I love myself more.