The Cost of My Disability

Once again I am left in a position of asking for help to cover what is an essential medication for the management of my symptoms. As many of you have doubtless figured out by now, I use medical marijuana to treat my Crohn’s disease.

The medication acts on two fronts. The first is symptoms management where it relieves the severe pain and nausea caused by my conditions. The second is by making the other medication I am on, more effective.

I’ve mentioned time and time again that it can be expensive, but for once, I am going to share specifics.

Every once in a while, someone will complain about the fact that I ask for monetary assistance. I get advice on how to “save money” which often ignores the reality of my situation.

So just how much does my medication cost?

Medical Marijuana ranges from $6 per gram to $12 per gram. Thanks to compassionate pricing, I get a 20% discount with my dispensary. I do my best to buy the cheap strains as much as possible, but often those strains are not the ones that work for my conditions.

More frequently I end up needing the strains that cost me $7.60 per gram.

My prescription is 2 grams per day.

That adds up to at least $465 in an average 30 day month. If the cheaper strains are not available, that total can go up to $600 per month. The choice literally becomes, do I buy groceries or do I buy my meds. Frequently what happens is I use the money we used to pay down our debt on the credit cards, to then purchase my medication, in effect never actually making any improvement in the debt situation. The remainder comes from the overdraft protection, which in turn can cost us up to $5 for each day that the account in overdrawn.

Some months it is a matter of deciding which is more important, my meds or groceries.

Medical Marijuana has not been covered by Trillium or ODSP since the rules surrounding prescriptions were changed by Harper’s government. It is also not covered by any other insurance, even if I wasn’t prevented from accessing other forms of insurance due to my “pre-existing conditions”. This despite the fact that it is a known treatment for chronic pain, chronic nausea, and a variety of conditions.

Every month means an overwhelming amount of anxiety as I try desperately to come up with some way to get extra money, so that maybe just this once, we don’t overdraw and can start the month without being in the red. Overdraft protection is supposed to be a failsafe, not a line of credit. The anxiety of course makes my conditions worse, increasing pain, increasing nausea, increasing blood loss, to the point where medication becomes even more of a priority.

It’s a desperate circle, and one I hope someday to be able to escape. But in the meantime, I ask for help.

 

 

The Cost of My Disability
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Interview for Bi Any Means

I sat down with Trav Mamone of Bi Any Means to discuss my book, my new vlog, disability activism, atheism, and more. You should take a listen if you get the chance.

Listening through the podcast I realized that I accidentally used  an expression I’ve been trying to eliminate from my vocabulary because of it’s ableist implications. A good reminder that even people who care about these issues make mistakes and it is up to us to make amends when we do. To those who were hurt, I apologize and endeavor to do better in the future. Mea Culpa. I’m sorry.

Teal Haired Ania Cartoon blushing and looking apologetic
I’m sorry

As such please note: CN for use of Insane as a pejorative.

Listen to the Podcast Here

Interview for Bi Any Means

Medical Marijuana is an Accessibility Issue: An Open Letter to Mayor Jim Watson

Dear Mayor Jim Watson,

My name is Anna “Ania” Bula, and I am a medical marijuana patient. I use mmj to treat the symptoms of severe Crohn’s disease.

I was diagnosed in 2008, after having lost nearly 60 pounds in the space of 2 months. Crohn’s disease is an autoimmune disorder that affects the digestive system. It causes inflammation of parts of the digestive tract which results in tears and ulcers. Among its symptoms are severe and frequent pain, exhaustion, nausea and vomiting, and diarrhea. The inflammation can get so bad, that it causes blockages which can lead to bowel death that require surgery. At times it feels like my body is trying to digest itself. Imagine, being able to feel your own intestines, simply because they are so inflamed that the pain outlines them for you.

Since my diagnosis I have been hospitalized several times as a result. I’ve had countless medical procedures. The severity of my pain and frequency of my symptoms makes it difficult for me to work. On more than one occasion I have lost employment or positions at work because of interference from this disability.

I have had to miss classes, and my grades which were always very good, dropped because I was simply unable to maintain the energy required to go to class.

There is no cure for Crohn’s disease. I will have to live with this for the rest of my life and I am only 27 years old.

Continue reading “Medical Marijuana is an Accessibility Issue: An Open Letter to Mayor Jim Watson”

Medical Marijuana is an Accessibility Issue: An Open Letter to Mayor Jim Watson

MMJ 101: But Doc, How Do I Take It?

Edit: This is a non comprehensive list. I will be working on a series of instructional videos to better demonstrate different methods.

One of the daunting aspects for new medical marijuana users is deciding how best to consume their new medication. I missed out on the learning experiences of youth weed experimentation, so I got to be that awkward adult asking the guy at the head shop to show her how a bong worked.

It was sitting in a park with my friend Rachael that I learned how to use a pipe. Foolishly, I thought you just lit the herb and inhaled right? We sat there in the park for a while, and I barely felt any of what we were smoking. Finally, Rachael looked at me sideways and asked “You’re blocking the holes while you inhale right!?” The resulting puff ended with me hacking out a lung and my friend rolling down the hill laughing at me.

In reality, patients are sent a bottle filled with dried buds of a pungent herb, and given no instructions on what to do with it. The Health Canada insert warns you to avoid smoking, but doesn’t give options. Someone new to marijuana is given no direction on how to proceed. For all that I was clueless in many ways, I am not alone:

 

Different methods have different benefits and disadvantages, but they seem to fall into two major categories: Inhaling and Ingesting. This may not be a comprehensive list. People who take marijuana are a creative bunch as I have come to learn.

Continue reading “MMJ 101: But Doc, How Do I Take It?”

MMJ 101: But Doc, How Do I Take It?

MMJ 101: Are You Worried About Becoming Addicted?

Whenever I bring up the topic of medical marijuana, whether openly asking people to bring up myths and questions, or discussing it with someone who knows about my own use, the first topic to come up is invariably the one of addiction.  People are concerned about the addictive properties, and like anytime a patient takes treatment for pain, there are the inevitable questions about whether we are worried about becoming addicted.

I’ve addressed some aspects of addiction and addictive properties in the first MMJ 101 post. Most importantly I discussed the fact that no one pauses to consider the importance of ending pain. It is such an important point that it bears stressing again. Chronic pain has severe long term consequences, and causes long term changes to the body. Treating it is a high priority. To question whether we are sure we have to treat pain, is to underestimate its importance, and this is something that most people, unless they’ve experienced it themselves, can have a hard time comprehending. To them, it’s just pain.

To have an honest discussion of addiction, we must first understand what it is. The social perception of addiction is that it is a series of bad decisions that lead to a chemical dependency. Some views stop there and collapse addiction entirely into chemical dependency, often joking of being “addicted” to caffeine or sugar.  At some point one becomes physically dependant on the chemical, creating a driving need, and ultimately the addicted person has to make another choice, this time to give up their addiction and begin the long hard road to recovery.  This view often fails to distinguish between addiction and any craving or yearning for something that one enjoys, and thus regards addiction as an act of irresponsibility.  There are some variations on this perception, ranging between people believing that addiction is wholly the result of some internal flaw within a person, and others believing that it is entirely the result of a chemical dependency.  Neither view grasps the true nature of this phenomenon.

Continue reading “MMJ 101: Are You Worried About Becoming Addicted?”

MMJ 101: Are You Worried About Becoming Addicted?

MMJ 101: Barriers to Use

Among one of the concerns regarding medical marijuana are the potential barriers to the use of this medication. In places, medical marijuana is still not legal, but even in places where it is, like Canada, there are still challenges that present themselves. While my experience is limited to Canada, I find that a lot of the barriers that exist remain the same. If you have experiences you would like to share, please feel free to include them in the comments.

Knowledge – Patient’s

One of the first and biggest barriers to medical marijuana is a lack of information as to how to go about getting a prescription. It used to be that you had to fill out a large complicated set of forms to be submitted to Health Canada. The application would then be handled by some bureaucratic process at which point you would be approved or denied.

In March 2014 the rules changed. Now, instead of filling out a Health Canada form, you fill out a form directly with your choice of dispensary. The Health Canada website provides you with a list of licensed dispensaries, and most of them have their forms available online.

The forms include two parts: personal information, and doctor prescription.

The prescription form has to be filled out by a medical doctor, and includes dosage information as well as the doctor’s office information.

The forms are mailed to the dispensary, which confirms that the doctor who filled out the prescription is properly licensed, and you become a registered patient.

Knowledge – Doctor’s

While patients are uninformed, so too are doctors. When I was first looking for a prescription, I asked my GI for it. He said no. I was surprised since he actually seemed supportive of my occasional use.

Over the next few months, whenever marijuana came up with other doctors like those at the ER, they recommended that I get a prescription. I was torn, doctors seemed supportive of the idea, but yet I seemed unable to get a prescription. Finally, I decided to bring it up with my GI again and ask why he was unwilling to give me one.

It turned out that my doctor was under the impression that a condition had to be fatal in order to allow for the use of medical marijuana. Even though he thought that pot would be beneficial for me, he believed he wasn’t allowed to prescribe it for me.

Other doctors are unaware of the current available research. I had one ER doctor believe that marijuana was counter-indicated for Crohn’s even though Crohn’s is one of the few conditions that have had studies confirming the benefit of marijuana.

Patients are not the only people being fed misinformation about medical marijuana. Doctors are just as likely to have mistaken ideas about its use, its addictive properties, and so forth. The new rule changes make doctors the gatekeepers to prescriptions, but no efforts have been made to properly educate them. This leaves it up to patients to educate them or find a sympathetic doctor.

Even those patients who are more knowledgeable in the effects and use of marijuana may find it difficult to find a sympathetic doctor. It is counterintuitive to most patients to push their doctors for explanations. Since there is the fear of being labeled a drug seeker, patients might also worry about seeming over-eager about the acquisition of a prescription.

Continue reading “MMJ 101: Barriers to Use”

MMJ 101: Barriers to Use

Medical Marijuana 101

I used to be terrified of cannabis. When I was in high school, I was chosen to be our schools representative at the regional anti-drug advocacy seminar. I was terrified of drugs. I was convinced that if I ever tried even a single puff, that I would spiral into the depths of addiction and end up on the streets looking for another fix. This is what we were taught through the anti-drug commercials, the talks at school and so forth.

When I left the sheltered community I lived in for university, the reality seemed quite different than what I was taught. I saw responsible and intelligent individuals indulging from time to time without any negative consequence. The more I heard about marijuana from people how had used in the past, the more I came across studies, and the more I witnessed, I realized that what I had been taught was wrong. Marijuana wasn’t some scary devil’s weed.

Although intellectually I knew that what I had been taught was wrong, I still feared touching the stuff. It just wasn’t my thing. And that’s perfectly ok.

I remember the first time I tried it. I was 25 years old, and I had been flaring for weeks. Every trip to the bathroom ended with me in tears. I felt like I had a rusty knitting needle sticking through my colon. I hadn’t really eaten in several days, terrified of the pain it brought. My roommate at the time was a stoner. Strangely, knowing her made me a bit more afraid of marijuana rather than less. She had told me more than once that her cousin with Crohn’s used it to help her with the pain. By this point I was desperate but still worried. I was allergic to smoke! Would it really work? Was I just setting myself up for some tragic result?

So I did what I usually do when questions such as this come up, I went to the google. I browsed several scholarly sites, and what I found reassured me. A lot of studies out of the Netherlands showed a link between marijuana use and pain reduction in Crohn’s patients. There was another site that showed the arguments for and against. The argument against boiled down to “it probably works but we don’t know because we haven’t studied it enough”.

I decided to brave it.

To understand how I felt, you would have to have been through extreme pain that lasted a long time, only to suddenly have it disappear.  You would have to have been hungry and unable to eat, and suddenly being able to enjoy food again. It was like having a sudden vacation in the midst of all this pain.

It was several months before I tried it again.

It is hard to explain what it is like to experience pain every single day. Energy becomes a precious resource, like water in the desert, and like water it is rare and needs to be guarded carefully.

There is a lot of misinformation surrounding medical marijuana. On the one hand you have peddlers of misinformation making it out that marijuana is the very worst of drugs, creating rumours about how stoned people commit acts of violence. On the other hand you have the people elevating it to the status of panacea.

As a user of medical marijuana who has experienced both sides of the coin (the fear and the treatment), I thought it would help demystify it by answering the most common questions I see and explaining about what my use looks like.

Why do you take it?

Cannabis works very well on a variety of symptoms. It is known for its pain control abilities, however, it can also help with nausea and relaxation. Different strains can also help with other symptoms, including anxiety, depression, and even certain types of focus problems.  There a variety of different conditions that benefit from different effects.

In my case I use it to control the chronic pain and nausea associated with Crohn’s. It helps stimulate my appetite on the days when I am having a hard time eating. It helps my muscles relax which in turn reduces arthritis pain. I have had prescription painkillers and anti-emetics, but when my Crohn’s is flaring I have a hard time digesting pills. Oral medications don’t work for me. They either don’t work at all, or wear off long before I can take my next dose. A lot of pain killers also cause elevated nausea.

Marijuana on the other hand provides pain relief without involving my digestive system, without provoking nausea, and leaving me a lot more clearheaded than pain killers do.

Are you afraid of getting addicted?

A lot of stoners will immediately start talking at this point about how marijuana is not addictive. There are conflicting studies on the matter, however, what is known is that marijuana is safe. With the conflictive information, it can be difficult to know what’s what.

There are numerous studies that suggest that marijuana is not chemically addictive.  So why the confusion?

The confusion comes from the matter of tolerance. Once of the markers of addiction is building a tolerance to the medication and requiring a higher dose to achieve the same effect. Consistent [read daily] use of marijuana can lead to an increased tolerance over time, which can lead to greater use. This would suggest that it is addictive.

However, if you talk to chronic users, whether medical or otherwise, they will tell you that all it takes to reset the tolerance is to skip a day here and there. In fact you can rid your system of marijuana in just four days. Withdrawal symptoms are mostly not present.

So if it is not chemically addictive, then what else is there. There is some suggestion that like many other activities that lead to feeling good, sex, video games, Facebook, it can be psychologically addictive. This means that people can begin to seek the sensation.

When all is said and done marijuana is one of the least addictive painkillers available, and one with the fewest side effects.

But is the pain really that bad? Pain is natural! You don’t look in pain.

Pain may be natural, but that doesn’t make it good. Pain and inflammation have more long term side effects than marijuana. Pain and inflammation can cause memory loss and reduced cognitive function, it can cause permanent nervous system changes. It can cause depression, change brain chemistry, supress appetite and sleep. It is a serious condition that a lot of people underestimate.

Chronic pain is not like the pain you get from a paper cut, or even a broken leg. It drains your energy your motivation.

When you live with chronic pain, you learn how not to show it. Pain becomes our reality so we have to learn to live our lives around it. I’ve laughed and danced around while my insides felt they were tearing. It costs me something to pretend not to be in pain, but the alternative is to never be able to have fun or too often make other people uncomfortable.

Earlier this year I had my wisdom teeth removed. Before the operation I was hooked up to a machine that measured my heart rate, blood pressure, and oxygen saturation. I was talking happily with the nurses, and periodically, my heart rate would jump up for some time. He nurses kept trying to figure out what was going on, until finally one of them thought to ask me if I was having any pain and I admitted I was. They had been unable to tell if not for the heart monitor. If trained professionals cannot tell when I am in pain, what hope do you have?

Ok, so why doesn’t everyone do pot?

Pot is not a panacea. While it is very good for a variety of conditions, pot is also counter-indicated for others, and not everyone reacts the same way. For example some people have had great luck with pot for migraine, while others find that marijuana makes their migraines worse.

While some people find it useful to help control anxiety, others find that the paranoia exacerbates it.

Even in my own use, I have learned that it doesn’t work for all types of pain. It is great when dealing with the pain from my Crohn’s and arthritis, but I have found that it doesn’t work at all for pancreatitis and tooth related pain.

Some people have adverse reactions to marijuana.

How does it work?

There are two active ingredients in cannabis: THC and CBD. Both of these have medical applications and both are useful for pain.

THC is most often used for the treatment of pain, nausea, and aids in relaxation. It is also the ingredient that is associated with the psychoactive side effects some people experience. A high THC strain is recommended for chemotherapy patients and other pain and nausea conditions.

CBD has anti-psychotic properties that act as a sort of antidote to THCs psychoactive effects. High CBD strains are recommended for convulsive disorders including seizures, and can be better for anxiety.

What do you mean by strains?

There are a variety of different genetic lines that lead to slightly different products that in turn yield different effects.

There are three major species: Sativas, Indicas, and Hybrids.

When it comes to the specific science of these three strains, I am not an expert. Some ideas are common knowledge however. Sativas tend to be associated with a more energetic high. Indicas provide a more mellow, sleepy high, and is commonly associated with couch lock. Hybrids combine elements of both. There are also some discussions of a head high versus a body high.

I know that I prefer sativas for days when I need to get work done at home, and indicas when I need to sleep. However, mostly I do a mix of both types, including hybrids to get the desired effects.

Among the species there are different product yields (strains) as well. The best analogy I can think of would be roses. The species might be the difference between creeping vines of roses versus bushes, while the strains would be the different colours that can be produced.

Strains often have interesting names. For example the strains that have been offered by my dispensary include Blue Dream, Afghani Bullrider, White Widow, Pink Kush, Girl Scout Cookies, etc. Each of these produces a slightly different effect and works on different symptoms.

How do I know which strains will work for me?

A little bit of experimentation is needed to know what works best for you, however, there are resources out there that can give you a guide to what the different properties of different strains are. My favourite resource is called Leafly. It lists the strain information, the effects, the medical information, as well the negative side effects like dry mouth, headaches, etc.

The site also includes blog information which includes more 101 information.

Some people, myself among them, find it useful to mix strains to achieve the desired effect.

Medical Marijuana 101