Earlier this week I sent an email to my Senator, Dick Durbin, asking him to support Senator Elizabeth Warren’s effort to slow the opioid epidemic with medical cannabis. This is my reply to his reply.
Following my open letter, you’ll find the verbatim response I received from his office on Tuesday, my address withheld so any would-be trolls have to at least do a little homework first.
(I also wrote to Senator Mark Kirk and Representative Rodney Davis. The former has not replied; the latter only wrote to tell me he received my correspondence.)
Open Letter to Senator Durbin
August 31, 2016
Dear Senator Durbin,
First of all, thank you for serving as my senator. I had to reply to your reply, because there are still a couple of points I must make regarding your role in passing reasonable federal marijuana laws.
Overall the tone of your email seems dismissive, which I just don’t get. You wrote:
“Under federal law, it is illegal to manufacture, sell, or possess marijuana.”
I promise I’m not trying to be a smartass, but that’s kind of the point. My assessment of the current situation is that the federal law is crap, and since you get paid $174,000 a year to write and vote on laws, well, I wanted to put a bug in your ear. If you’re going to represent me—and the 82% of Illinoisans who agree with me on this issue—you have to hear from us, right?
I can show up at one of your offices to discuss the matter if that’s more effective, but I have a debilitating medical condition which makes traveling extremely problematic. Please don’t make me do that. (Coincidentally, that debilitating condition also qualifies me for medical marijuana under the State of Illinois’ Medical Cannabis Pilot Program.)
The bottom line is that medical marijuana needs to be legal at the federal level.
Marijuana for general use isn’t really a part of my agenda at the moment, but since you mentioned that you “oppose the legalization of marijuana for general use,” I think now is a good time to remind you that your job is to represent the nearly 13 million people who live in Illinois.
We get to vote our conscience. You get to represent us.
While legalization proponents only make up about 45% of the State’s population at the moment, the margins are shrinking. You should definitely keep an eye on that.
Something else in your reply bothers me. You wrote, “I will keep your views in mind if the Senate considers the use of medical marijuana as an alternative pain relief option for opioid addiction treatment.” Seriously. Where’s your initiative?
The Beltway might be a cesspool, Senator, but you can still make waves.
Sincerely,
Emily Suess
Senator Durbin’s Form Letter
August 30, 2016
Ms. Emily Suess
XXXX X XXXXXXX XX
XXXXX, IL XXXXX-XXXX
Dear Ms. Suess:
Thank you for contacting me about the use of medical marijuana and the nation’s opioid epidemic. I appreciate hearing from you.
Under federal law, it is illegal to manufacture, sell, or possess marijuana. While the states have similar prohibitions, some states have exempted from their prohibitions the use of the drug purely for medicinal purposes. I oppose the legalization of marijuana for general use. At the same time, I believe that marijuana may have medical applications when prescribed by a doctor in specific cases.
The opioid addiction epidemic reaches every corner of our society. There is no town too small or suburb too wealthy to avoid this crisis. Since 1999, the number of drug overdose deaths in America has more than doubled. In Illinois, there were 1,652 overdose-related deaths in 2014, an increase of almost 29 percent since 2010.
I am a cosponsor the Comprehensive Addiction and Recovery Act, which would provide a community-based response to heroin and opioid addiction that includes law enforcement, the criminal justice system, public health institutions, and the recovery support system. This bill passed the Senate in March 2016, and would authorize grants to states to train law enforcement agencies and first responders how to use naloxone, an overdose reversal medication.
I will keep your views in mind if the Senate considers the use of medical marijuana as an alternative pain relief option for opioid addiction treatment.
Thank you for contacting me. Please feel free to keep in touch.
Sincerely,
Richard J. Durbin
United States Senator
Last night I had my first dream where my dream body’s abilities matched my real-life body’s abilities. Up until this point, I’ve always been able to move around in my dreams like a normal person.
Reasonable or not, waking up from an able-bodied dream has always made me feel like maybe my current health issues aren’t permanent.
Most recently, I’ve dreamed about riding my old red Nishiki on Brittlebank Road in my hometown and speed biking on the Lloyd Expressway. I’ve dreamed that I had to go to the bathroom really, really urgently while at a shopping center, and I was able to speed walk to the nearest restroom.
But last night. Ugh…
Not only was my dream body the wreck it is in real life, but I was back working for NAPA Balkamp doing a job I absolutely detested. To make matters worse, they had taken out stairs and railings during some kind of remodeling phase, and I was forced to enter and leave the building using a maze of plywood ramps without any railings to catch myself.
In real life the building has two floors, but no elevators. It’s far from accessible.
But back to the dream. Where possible, I’d lean a shoulder into the wall as I walked along the makeshift platforms. Kind of like when Dan was driving us up Pike’s Peak and I reflexively shifted my weight to the center of the car.
Just keep away from the edge.
But there were parts of the plywood platform maze that were completely open. I was dizzy. I looked down at my feet to see that—as in real life—my feet weren’t quite able to do what my brain was instructing. I told my able-bodied coworkers to just go around me, and I contemplated sitting down and giving up.
That’s when I woke up, overwhelmed by a sense of defeat.
In a way, applying for my medical marijuana card has required that I own my fibromyalgia diagnosis. Maybe that’s created a psychological shift that’s manifest in my dreams now?
Thursday afternoon we met with representatives from a local construction company. We’re getting quotes for repairing rotting fascia and soffits and bad gutters. In the next year or so, it will be imperative that we do something to remedy those problems.
Since we were having them come out to the house, we also had them look at our 1960s bathroom. It’d be safer for me not to step over the sides of a tub, so priority uno would be a walk-in shower. But there are other issues to deal with if time and money allow, including a cracked toilet tank, a rusting sink, gross shower doors, and two lights and a bathroom fan all on the same switch. Oh, and the bathroom fan is so loud we had to yell our questions and replies.
“HOW DO YOU FEEL ABOUT THIS TILE?”
“THE WHAT?”
“THE TILE. DO YOU WANT TO KEEP IT?”
***
Yes, getting a walk-in shower for my own safety makes me feel old and infirm. But I’m finally coming around to accepting my fibromyalgia. It’s time to look at ways to make my life easier, not stubbornly insist that I should be able to do things like normal people.
“I have mobility issues,” I told them when trying to explain why I wanted something with the lowest sides possible. (“Mobility issues” is my new go-to for explaining to people that I can’t do jack shit.)
I’m glad I fessed up, though, because they had ideas. Ideas for grab bars and low-maintenance materials.
“Would a corner seat or something be helpful?”
My god, that’s brilliant. “OH! I would love to have a built-in bench at the back of the shower,” I said. While the woman drew it in on a piece of graph paper, I imagined ceremonially going all Office Space printer scene on my drugstore shower chair.
Last night I went to sleep dreaming of a new bathroom, knowing that even if we find the money to get it done it won’t happen until next construction season.
On today’s agenda is a visit from a general contractor to tell us how much it’s going to cost us to replace our gutters, fascia, and soffits.
We love our little home, but there are spots on the front of the house where the gutter is hanging on by a single, rotten wood fiber. Surprisingly, I am not currently battling anxiety over the situation. It’s bad, but doesn’t seem overwhelming.
Yesterday we took our Lab and Wolfhound mix, Boomer, to the Urbana Dog Park. Before I talk too much about our experience, I want to take a second to recommend the bejeezus out of the dog park to any local readers. It’s gigantic. The dogs are a hoot. The owners are friendly.
***
Our backyard is only partially fenced, so Boomer has to be leashed when we take him out. And even though a co-worker highly recommended the local dog park and we’d discussed taking Boomer many times, we had lots of legitimate reasons for not getting around to it. Most of them are related to our health; between my fibro and his psoriatic arthritis, we make a real pair!
But we were also waiting for Boomer to respond better to our commands.
“Want to put on a hat and go to the dog park with us?” Dan asked. Yesterday’s weather was gorgeous. So gorgeous that we had the windows open all day. No question it was the perfect day to give it a try.
“Um,” I hesitated, “Sure, but I need a little time to psych myself up.”
Leaving the house is a serious undertaking for me. I know I should do it more, but it is so hard. First of all, it requires putting on real clothes, including a bra. Bra straps are torturous for me, because they put pressure on trigger points at the base of my neck, shoulders, and back.
Going out also requires standing and walking—activities most people don’t consider actual activities so much as ways to complete actual activities like going to a concert, putting in eight hours at work, or taking the kids to a pool party.
For me, however, standing, walking, and physical exertion instantly lead to vertigo. I’ve taken some pretty hard falls as a result, and those falls have always led to all-over pain flare-ups and a healthy fear of walking around.
Three minutes later, Dan was ready to go.
“Now?” I said. Hoping for more time. “I just ate.” (I should probably also mention that eating slows me down even more. The only thing I can figure is that all of my body’s limited energy is used for digestion, so muscle coordination and strength are out the window.)
“Yeah, now.”
***
Poor Dan had to keep Boomer in line and deal with me hanging on his arm. Uneven ground is my nemesis. (Note to self: it’s probably time to suck it up and get a walking cane.) Fortunately, the 10-acre dog park has lovely benches nestled under giant, shady trees.
While the guys ran off to play, I watched dozens of dogs having the time of their life. One little Aussie shepherd mix approached me with a red Frisbee in her mouth. Her owner was chatting with someone a few feet away. She dropped the Frisbee at my feet and gave me a pleading look. So I threw it.
It didn’t go far, but she didn’t seem to mind. She chased after it and came back, deliberately dropping it at my feet after each retrieval. Before long, a slightly overweight retriever brought me a tennis ball, and half a dozen other dogs came and offered me a chance to give them a good scratch behind the ears.
My shoulder is sore from throwing dog toys, but it was so much fun. Not only was I accepted and included despite my shortcomings, but Boomer had the time of his life. In fact, Dan went to the rec center today to purchase the annual membership. No more one-day passes for us!
My parents (above) stayed with us overnight on their way to La Porte, Indiana for a family reunion, and then they were out the door to finish their trip first thing this morning. Despite the short visit, there was time to mention that I was applying for my medical marijuana card.
Both of them are concerned about my health and my treatments. They see how hard it is for me just to walk and understand that sometimes when my fibromyalgia flares up I can’t even be bothered to comb my hair after a shower.
They even witnessed how Cymbalta (prescribed by a previous doctor to treat my fibro) made me batshit crazy. I was so emotionally unstable on Cymbalta that I hyperventilated and broke out in hysterical tears in front of them during a discussion about policing in the US.
But back to giving them the news.
Mom and Dad are not easily ruffled, so there was no overreaction. In fact my mother has surprised me this year by saying “Go Bernie Sanders” during a discussion about the primaries, buying a Meghan Trainor CD, and agreeing that marijuana should be legal.
That’s a step beyond saying marijuana should be a controlled substance available to patients by prescription. She thinks it should be handled like alcohol. I wish everyone was as reasonable as my mother.
Anyway, when I told them what I was doing, my dad—the most stoic person I know—didn’t say anything. I don’t know where he stands on the issue. But I do know that even if he disagrees with me he’s not judging my choices, particularly when those choices are legal.
My mom’s reaction was to nod, as if she knew what I was going to say before I said it. Maybe she did know, since I have been publicly fundraising and sharing related links on Facebook for a while now.
Speaking of my GoFundMe campaign. If you’re a supporter, please consider sharing the link with your followers on social media or making a small donation, and help me raise another $100 by September 1.
Oh my God, you guys. If you haven’t seen this yet, you must. MUST!
All of this talk about marijuana and getting my medical cannabis card reminded me: back in 2006, a Dearborn, MI cop called 911 after he and his wife used confiscated marijuana to make pot brownies.
And he though he’d overdosed.
And he was convinced he was dying.
And then someone awesome turned the actual 911 call into this little animated gem.
Dan and I went to the DMV today to get my address updated on my driver’s license. We’ve lived in this home for more than a year, but I dread visits to the Illinois Secretary of State Driver Services branch more than just about anything in the world.
While I sat waiting for an hour in a very plastic, very uncomfortable chair, I started feeling a little lightheaded. This happens to me frequently, but it’s more panic inducing to feel like you might lose it in public.
Oh my god, oh my god, ohmygod. What if I fall out of this chair and end up kissing those baby blue asbestos tiles? What if the mean lady who is yelling at everyone to sit down kicks me out because I’m not following her instructions? Why the heck aren’t there any Pokémon here?
“Number 63!”
If I was a homebody before I got sick, I’m downright reclusive now. But I was wearing my big girl panties this morning, and I endured. I took a few deep breaths and tried to sit tall to get more air. Eventually I had my temporary license in hand and a promise that a real license would be mailed to me in about two weeks.
The temporary ID should be good enough for my medical marijuana card application, but I’m preparing myself for the very real possibility that IDPH will tell me some part of my application isn’t valid. Because that’s how they do.
It’s gray and soggy here in Urbana today. I wrapped up work a little bit ago, and I was barely able to lift my butt out of my desk chair. Fibromyalgia’s pain and stiffness are intensified by about a bajillion when icky weather settles in.
But since I don’t yet, the next best thing is to do whatever small bit I can to help other people get theirs. So, here we go…
Medical Cannabis Outreach
This is the group helping me get all my ducks in a row. If you have questions about the Illinois Compassionate Use of Marijuana Pilot Program, would like information about the medical benefits of THC and CBD, want help preparing your application, or need assistance at any step of the process, talk to these people. They are friendly and knowledgeable. You can also follow them on Facebook.
Salveo Health and Wellness
I don’t know much about much yet when it comes to marijuana, medical or otherwise. So I’ve been asking people for their opinions. This dispensary was recommended to me by another patient who already has his card. He said it’s worth the drive for better prices and selection. Plus the people here are great at answering any questions you might have. You can find Salveo Heath and Wellness on Facebook too.
Licensed Medical Cannabis Dispensaries in Illinois
If that’s too far to drive, you can purchase cannabis at any licensed dispensary in Illinois. (Note: you have to choose a dispensary as part of the application process.) As the program expands, more are likely to be added to this list. Check with the Illinois Department of Public Health to make sure you have the most recent list.
You can apply through the State’s website on your own if you like. You can also see which conditions qualify for the medical cannabis program, locate fingerprint vendors, and get information on fees, among other things.
This Springfield-based Advocacy group makes it easy for you to contact the Governor and other elected officials, gives you tips for talking to your doctor about the medical cannabis pilot program in Illinois, provides resources for patients and physicians, and even has helpful infographics you can read and share.
Cannabis Patient Advocacy Coalition
CPAC is a “patient advocacy group committed to making medical cannabis an acceptable and accessible treatment option for Illinois patients.” Read about current barriers to care, sign the petition, reach out to lawmakers, and join the coalition.
If you’d like to see a resource added to this page, let me know in the comments!
Yesterday was our trip to Canton, Illinois to meet with the folks at Medical Cannabis Outreach. The original plan was to attend an 11 a.m. informational seminar, dally all afternoon, and return for a 6 p.m. appointment with the doctor. However, once we realized that we’d be on the road for about four hours round trip, we decided to skip the seminar and only go to the mobile clinic.
Thank God. We didn’t get home until 10:00 and we were wrecked. Travel is really hard on both of us.
Paperwork, Paperwork, Paperwork
The first thing MCO helped me do was sort through all the documentation. The State of Illinois may have made medical cannabis legal, but it’s criminal how difficult they’ve made it to navigate the system.
It’s apparent they don’t want patients to actually participate, and based on stories I’ve heard, if you deal with IDPH directly you’ll be treated like a criminal, a pothead who doesn’t have a qualifying condition and just wants to get baked. (I say outright legalize it anyway, but that’s another post for another day.)
“You drove two hours to be here?” one of the MCO employees asked me.
“Yep, all the way from Urbana.” Looks of shock turned to nods of agreement when I explained that it was easier for us to travel that far than it was for me to figure out the application process on my own.”
For instance, when the state website didn’t remember my login and denied me access to my saved application a couple of weeks ago, I threw up my hands in attrition.
(I am not a dumb person; I’m also not historically frightened by bureaucracy. I navigated the court system and filed for my own damn Indiana divorce back in 2008. So believe me when I say trying to get this done on my own was a fucking nightmare.)
Fingerprints & Photos
If you want your medical cannabis card in Illinois right now, you have to be fingerprinted and have a passport-style photo taken. This complicates things if you’re applying on your own, but MCO collected my fingerprints and took the photo according to specifications right there on site. It wasn’t long before I was off to meet with the doctor.
Seeing the Doctor
The doctor working with MCO at this weekend’s mobile clinic was a good guy. His wife and office administrator (same person) greeted us warmly.
The doc asked routine questions about my diagnosis, my health in general, and the medications I am currently taking. I told him about my terrible experience with Cymbalta and my mostly losing battle with IBS.
“That’s actually a part of fibro,” he said. “I hope one day they will add IBS to the list of conditions.
“How about your sleep?” he asked.
“It’s horrible.”
“People with fibromyalgia rarely enter REM sleep. That’s the sleep the body needs to heal and restore itself.”
It wasn’t news to me, but it was validating to hear it said out loud. You don’t get that every time you see a doctor, believe me.
He also asked me if I had ever tried Lyrica. I told them that I hadn’t. “I’m not pushing that on you,” he assured me. “I’m just trying to get a complete picture. I believe medical marijuana is a much better treatment option.”
He spent some time talking with me about how marijuana works on the body, explained the difference between sativa and indica strains, assured me that I couldn’t OD on it, and promised that I would not suddenly find myself craving heroin just because I’d used marijuana.
Dan and I laughed a little, because OF COURSE NOT. But there are people out there who believe a lot of ridiculous bullshit about marijuana. In fact, I’m still a little pissed about the outright lies I was told about it in my youth. I mean, if you think alcohol and marijuana are bad or they’re against your religion or something, fine. Don’t use.
Lord knows it’s easier to get a prescription for Percocet.
Wait, a Traveling Doctor? Really?
Many patients in Illinois are hitting another roadblock when trying to get their card: their doctor won’t sign off.
It’s not just a matter of physicians stubbornly denying their patients the alternative, though. One employee remarked that he’d run across several cases where doctors were open to their patients using medical marijuana but the administration at the hospital or clinic where they practiced wasn’t having it.
There could be a number of reasons for this—resistance to change, issues with malpractice insurance that maybe haven’t caught up with the times, God complexes, sadism. Who knows for sure? It’s bad for patients, though.
That leaves people like me to seek out independent doctors.
“Do something for me?” the director asked me, “When you go back to your primary doctor, make sure they know you are using medical marijuana. Not only do they need to know for practical health reasons, but we want doctors to see the changes in their patients, and join us in advocating for medical marijuana where they work.”
So, hell yes. Three cheers for non-affiliated MDs who set up clinics within 2 hours of where I live.
And three cheers for his wife who gave Dan and me hugs and wished us well on our way out the door.
The Price Tag
On my GoFundMe, I had originally posted the total cost for the card application, fingerprinting, photo, and doctor’s visit was going to be $1,125. Long story short, I was adding up prices not realizing that the different fees I was hearing were totals, not itemized prices. So when all is said and done, it costs $685—$300 of which is the State’s fee for a three-year period. I updated the page to reflect this lower goal and I’m 20% of the way there!
Getting My Card
I’m hoping to have a card some time in October. There are a couple of things I need to follow up on to make sure my application isn’t kicked back to me. But at least now I understand what’s going on and there are people dealing with the submission process for me.
Earlier this week I sent an email to my Senator, Dick Durbin, asking him to support Senator Elizabeth Warren’s effort to slow the opioid epidemic with medical cannabis. This is my reply to his reply.
