crohn’s

I almost died last week.

CN: Descriptions of withdrawal, hospital admission, medical symptoms and needles.

It wasn’t an accident, or even a sudden onset of something like appendicitis. No, my brush with death came about as a result of fear. Specifically, other people’s fear. Fear of addiction, fear of being wrong, and fear of being fooled.

You see, the week before I was admitted with Crohn’s. I went to an appointment with my Gastroenterologist and he sent me straight to the ER. I was admitted, and put on high doses of Dilaudid, after the usual adjusting games where they started me on 1mg every 6 hours, before finally conceding that 2 mg every 4 was what was needed. In addition to that, I had Gravol and Benadryl to control the various side effects of the opiate.

I spent the week essentially zonked out after several weeks of increasing pain and nausea, and a trip to the ER every 2 weeks since Christmas. My admission came on the heels of two weeks of being sick with a sore throat, which kept me not just from being able to take my Remicade, but my medical marijuana as well. My throat hurt too much to handle the irritation from the smoke.

My crohn’s had gone into overdrive. I wasn’t digesting, I was in pain, and I needed help.

The reason the doctors agreed to finally treat my pain properly is that I told them, that once I got home I wouldn’t be taking dilaudid anymore.

Not one doctor stopped thinking about their fear of addiction long enough to hear what I was saying and remember their training. (more…)

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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.

 

 

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

Alexandania.com

Children and Disability

Ever since I turned 27, the thought of children has been on my mind. At 28, I am now a year older than my mother was when she had me. I always thought that my life would go a certain way. I would get my degree, get married, start a career, and have a baby. All of this was supposed to happen before I was 30.

Then I got sick, and one by one those dreams went up in flame.

I couldn’t go to medical school. Not only that, but I might even be able to manage a regular job let alone a career.

I got a degree, but unlike I expected my whole life, I am graduating with a bachelor with no idea of when or if I will ever be able to get more.

Some things changed, but not for the worse, just became different. Instead of a husband, I have a wife. The important part of that: the love, the support, the companionship remains the same. We live in Canada for now, which mean marriage for us is possible.

And then there are children. (more…)

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. (more…)

Don’t Make Me Pee In Your Fruitloops

It’s happening again.

Someone came up with a brilliant idea. Hey, why don’t we charge money for public toilets?

The reasoning is that by charging for bathrooms, the only people who will use them are people who actually have to go. Cut down on public sex, drug use, and raise money for the city all in one go!

Except?

Except this is just another example of how often the rights of the disabled are trampled over in the interest of “the greater good”.

What’s the big deal? It’s just a bathroom? If you can’t afford to use it, just wait till you get home?

Bathroom use is one of those interesting issues. On the surface we know that it effects everyone. One of the most recognized books in toilet training is literally called Everybody Poops. We don’t need to be socially convinced that people need access to washrooms. Where we make mistakes is in taking bathroom access for granted.

For the average person, if you need to use the bathroom, it is just a matter of finding one. You are able to devote a bit of time to looking for one, and if it takes a little while to find it, you are able to hold it in until you do. Chances are you have a restroom in your home and/or at work.

But some of us are not the average person. Some people are like me. (more…)

Sometimes the Cure Really is Puppies!

For the last several months, I have been dealing with increased Crohn’s like symptoms: an increase in pain, in nausea, and in extreme exhaustion. All the tests however are coming back normal. It’s possible that one of three things are going on:

  1. The symptoms are being caused by my IBS instead of my Crohn’s.
  2. My Crohn’s is active in my small bowel and we need new tests to detect it.
  3. I am one of the percentage of Crohn’s patients who have symptoms but the location of the disease is hard or impossible to find. Crohn’s sometimes likes to hide.

The doctor’s advice was for me to “take it easy” in the hopes that less stress will mean less symptoms. This is especially the case if the bulk of the symptoms are the result of the IBS. The problem of course is that in terms of stress, I am already on disability. I don’t work in the traditional sense, though I would argue with anyone who would try to say I don’t work. (Ever try to make 70 hats in under a month? Ever write a book?)

Most of my stress comes from the poverty that comes with being on disability. I live on a fixed income that was fixed long enough ago and hasn’t accounted nearly enough for inflation. I live on an income that depends on me having to make additional money but not so much that they start docking my support. My anxiety fixates on things, sometimes legitimate and sometimes not. In addition my depression sets off my anxiety.

If I can’t actually make more money and money is the leading cause of my stress, and I’ve already done as much as possible to relieve other forms of stress, what else is there?

I’ve looked at the problem extensively, and a thought emerged. You see, whenever I am around someone’s anxiety service dog that dog responds to me in a way indicating that they want to alert me. More than once, I’ve been alerted to an anxiety spiral by a dog on multiple occasions. When that happens, my sudden awareness of what is going on helped me work on therapy techniques to draw me away from the spiral.

It makes sense. When you live in a circumstance where some measure of nervousness and worry is justified, how do you differentiate regular worry from pathological anxiety?

For some time now, I had been considering the possibility of a service dog. The biggest barriers always seemed like a lack of easily accessible information, and an assumption that the costs would be prohibitive.

Then a little bit of luck came my way. I met a wonderful person who not only had an anxiety service dog, but had gone through the process herself. Her animal is what is called an owner-trained service animal, a designation that is not allowed in some places but luckily is in Ontario. Now, I am still learning what there needs to be learned, but I can say that an owner-trained service dog is NOT a fake service dog. It is simply one who was trained by the owner rather than by a specific program however, they both need to meet the same level of qualifications.

This person was willing to help me and let me know how to go about it.

With the consultation of my friend, and the pressure from my increasing symptoms, it seemed as though we were being pushed in that direction. In addition, our dog is starting to age and it getting to the point where a younger companion could do a lot to keep her in good health and extend her life. The final decision was aided with a promise from my parents to help with some of the costs in the form of a Christmas present.

We decided to give it a go and early this week we welcomed CJ (After CJ from West Wing) to our family.

Our choice of breed was dictated by a series of considerations:

  • Our home
  • Our lifestyle
  • My ability to handle certain weights

All of these considerations pointed us to a small dog. Toy breeds are also very attuned to humans since they grow up in much closer contact with people than other breeds.

My friend helped me administer a temperament test more than once, one based on one of the recognized assessment tests out there.

I will be writing about the process while I go through it. But first…. Puppy pictures!

Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy Tiny Black and Beige Chihuahua Puppy
Tiny Black and Beige Chihuahua Puppy