9 Realities of being on Disability

Every election cycle, every time disability comes up in the news, there will be at least one mention of the lazy people who live on government assistance. It seems at least every year, some new bill adding barriers to receiving disability or attacking so-called fraud in the system will be put forth.

There seems to be this mistaken perceptions that disability is filled with abled people who are lying about being sick in order to lead the “easy life” of living on disability. This idea that fraud is rampant and that people are living in the lap of luxury.

This idea is so ludicrous compared to the realities of what it is really like living on Disability. So here are 9 and one bonus, realities of living on disability.

Continue reading “9 Realities of being on Disability”

9 Realities of being on Disability
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Yes, this again

There is wet snow falling outside. It is cold. I was out there maybe five minutes and my hands are frozen. I have a friend visiting from the states, and in celebration I decided to make a special dinner and was missing an ingredient or two. Although I can drive to the store, I was dreading the thought of going out there. It took mental fortification before I was actually able to get up and do so. 
 
While I was at the store, there was a gentleman, as bundled up as he could be, parked on a mobility scooter in the middle of the parking lot. He had a cardboard sign that was slowly getting wetter and losing the text as the the wind pelted him with wet snow. The grayness of the day in addition to the snow made him almost hard to see, an uncomfortable prospect given the cars driving around him. 
What could possibly possess him to make him willing to sit there, wet and cold?

Continue reading “Yes, this again”

Yes, this again

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

Open Letter to Prime Minister Trudeau and Premier Wynne: Legalize Patients

To the Right Honourable Prime Minister Justin Trudeau and to the Honourable Premier Kathleen Wynne:

My name is Ania Bula, I am a citizen of Canada living in Ottawa, and currently a recipient of Ontario Disability Support Payments (ODSP). I am also a registered medical marijuana patient.

I receive this prescription to help me manage the symptoms of moderate-severe Crohn’s disease. As a quick background: Crohn’s Disease is an autoimmune condition that affects my digestive system. Symptoms can take place anywhere from the mouth down to the anus. This condition causes my digestive system to become inflamed and swollen, which in turn causes it to be very delicate. During flares, the inflammation can be so bad that the lightest pressure causes the membranes to tear and ulcerate, causing blood loss. The inflammation can also cause blockages in my intestines that need to be operated, a loss of digestive ability leading to malnutrition, as well as causing severe pain, nausea, vomiting, and diarrhea. Needless to say, it is not a pleasant condition to have.

I have been treated for Crohn’s, in addition to other conditions, for close to a decade. The primary medication I receive is an immune suppressant by IV once every 6 weeks.

The prescription marijuana serves two purposes. The first is symptom management. Marijuana helps with pain and nausea control. Without it, many days are too painful for me to function appropriately. I cannot get out of bed, I cannot keep food down, I become malnourished and have to be admitted to hospital. Once there I am usually prescribe harsh steroids which, while helping minimize the flare, also causes damage to bones and joints already ravaged by this and other conditions.

Because I can take marijuana in ways other than through oral ingestion, it makes the pain treatment more effective. Frequently, the swelling in my intestines prevents more severe oral medications like dilaudid, Percocet, morphine, and others, not to work effectively. Moreover, the side effects of opiates can often mirror some of the same symptoms I am already dealing with like nausea.

I take small doses of marijuana throughout the day, which helps me get work done: either paid work like writing, or even just domestic chores like making dinner. For me, marijuana has been the thing that has helped the most when it comes to regaining some semblance of normalcy when it comes to quality of life. It has kept me out of the hospital on more than one occasion. It has helped me feel human again, when many of my conditions conspire to do the opposite.

In addition to symptom management however, marijuana also helps actually treat my condition. Studies have shown promising results when it comes to difficult cases such as mine. Many patients who have not responded to conventional therapies alone, have managed to go into remission when given the added treatment of marijuana.

Why am I telling you all this.

Recently, under the direction of Prime Minister Trudeau, the Canadian government has started the process towards legalization of cannabis. While this news makes me happy, there is a much more pressing issue facing patients that I believe could be addresses even before legalization can officially happen.

Medical Marijuana, ever since the new rules put forth by the Harper Government, is not covered by insurance. Not even that provided by ODSP.

The cost of marijuana is high. The standard dose of 1 gram per day can run you about $10 per day. For those of us with larger prescriptions, the associated cost is even higher. Often patients are forced to choose worse or less helpful strains in order to deal with the cost. My prescription can cost me up to $600 a month. As someone who lives on a fixed income from ODSP, that number is far beyond what I can reasonably afford. As a result I have had to go into debt to get my medication, borrow money from friends, ask strangers on the internet for monetary help, and sometimes make the decisions between groceries or my meds.

This is not a decision that should ever have to be faced by patients. Even if the mmj was only for symptom management, it would still be an essential part of my treatment. The increased stress surrounding the ability to get my medication also has negative side effects on my conditions itself, which are sensitive to anxiety and stress.

I am asking you to please help patients like me. To work to make our medicine a help and not an additional burden. Healthcare is, I believe, an integral Canadian value. We’ve built a national identity out of being the country that cares for its sick, and I am asking you to please continue that tradition. Help us get our meds covered. Help us not have to struggle to get treatment when already living on an extremely fixed income.

Sincerely,

Ania Bula

Writer of Young, Sick, and Invisible

Alyssaandania.com

Open Letter to Prime Minister Trudeau and Premier Wynne: Legalize Patients

Robbing Peter to Pay Paul

Growing up I used to hear this expression a lot from my singing teacher. It usually meant that I was doing something with my throat or voice which, while sounding good at the moment, could do long term damage to my vocal cords. I’ve been thinking about this expression a lot lately.

Ever since it came up during a discussion with friends. I was explaining how some of my medication I seemed to take in order to deal with the side effects of other medications. The conversation turned into a discussion of side effects and I mentioned how almost all of mine have increased risk of cancer listed. I joked that the meds I were taking risked me dying a slow and painful death, however I take them to avoid dying a slow and painful death now.

I joked that I’m robbing Peter to pay Paul. Continue reading “Robbing Peter to Pay Paul”

Robbing Peter to Pay Paul