It started even a bit before April.
After publishing my last article about Ganjahnista’s, shit really started to hit the fan.
I went to visit my medical dispensary and found out that despite a COURT ORDER ordering that medical dispensaries be allowed to stay open until the court could rule on whether they provided a necessary service to patients in accessing their medication, Police had started raiding and shutting them down. They claim, contrary to the truth, that in light of legalization that it meant the court order no longer applied. This is patently false since the court order was specifically in anticipation of the court case, and stands as long as the court case stands.
The fact the police are outright lying or so completely unaware of the law, that one wonders how they expect to enforce it, is done at the behest of conservative pressure. Have to make sure the government pot shops don’t have any competition, especially when they’re trying to get away with charging $500 an Ounce. Their illegal crackdown jeopardizes the H.O.P.E project previously mentioned, and even in just the 24 hours since it started happening, there were reports of a rise in overdoses and ambulances responding to calls all over the city.
I’ve since found out that despite being open for years with city approval, the Police have also shut down Ganjahnista’s. Not only is this another patient safe space gone, but I had also JUST arranged to have some of my artwork on display there on consignment so that’s all gone now possibly.
Then my Crohn’s started acting up quite a bit, to the point where I felt the need to go to the hospital. For some weeks my pain had been steadily increasing. I was avoiding eating and could barely sleep. When the pain started particularly messing with the same place where I had previously had pain from pancreatitis, I decided it was time to go in.
The first visit was awkward. The doctor seemed dismissive from the first, and only really ran a blood test which he said looked perfectly normal. He gave me dilaudid as a prescription and sent me home. On a suspicion, I asked to get a copy of my test results “for my records” before heading back. As I waited for the hospital-token cab to come pick me up, I scanned my results and almost marched back in in anger.
Not only was my Iron a few points below the lowest acceptable levels, suggesting a GI bleed, but also several of my electrolytes were low, as was my anion gap. Usually a low anion gap requires a re-test since it is relatively unusual, however, when it is legit, it usually means that there is inflammation.
My white cell count while within acceptable levels was on the higher end, when compared to every other level which was low. Since I’m on double doses of Remicade which is an immunosuppressant, my immune response is often lowered. My fevers exist at lower temperatures, my white count may not respond as actively as someone else’s.
All of these results suggested increased inflammation as well as flaring, and yet the doctor has said my tests looked normal. As an aside, this is the same hospital that said my CT looked good, only for me to find out later that I had a hernia, 4 cysts, a kidney stone, and no cartilage in my right hip. Not sure which part he thought looked good.
That’s when I found out my first screw you from the #Fordnation government when I found out that ODSP would no longer cover the prescription from the ER. While this time the dose was meant as a specific short-term treatment for pain, in the past it was a necessary taper dose to prevent heart attack due to withdrawal symptoms after the high doses given to me while admitted.
I’m lucky in that I have the support of family and friends and so this dose was covered, and hopefully even in the future I might be able to do so again. However, without that, relying only on the money from ODSP, it wouldn’t be guaranteed. There would frequently be times when I would have to skip the meds necessary to prevent me from risking a heart attack.
I hoped that between the dilaudid and sticking to clear liquids for a while would be enough to hold me over until my Remicade. But when even clear broth left me trembling in pain, I decided to go back in.
This time I ended up admitted for a series of a few days.
The timing was unfortunate though since I was finally close to my appointment with a new GI. Something which had been in the works for the last seven months and which needed to happen so I could FINALLY find out whether the spot on my esophagus is just a cyst or something more serious. I have an increased risk of Lymphoma due to the biologics I have been on as treatments for my various auto-immunes.
As luck turned out though, I ended up being sent home the day before my appointment.
I had heard good things about this doctor, and more importantly, this referral would finally make it possible to follow up on some areas of concern from the last few months.
My excitement turned out to be in vein. The appointment went terribly. The doctor got right off on the wrong foot by saying that my CT results from my admission, didn’t show anything wrong. Not a great start, to basically question why I’ve been admitted, especially when the fact that steroids helped reduce the pain dramatically. But still, I didn’t want to assume that he was aggressively questioning the validity of my symptoms. I pointed out that whatever the CT showed, that prednisone seemed to be helping me. Moreover my pain had been severe enough that I had stopped being able to eat even clear broth without regretting it and that between that and my electrolyte and iron levels starting to fall, that it seemed prudent to prevent it from BECOMING more serious.
We continued on with me explaining my medical history. This was particularly necessary since other than the information that had been collected in this new City, he had NONE of it. So basically, all he had was 2 CTs from the last 7 months. Nothing from my former GI, nothing from Ottawa, nothing explaining the last 13 years of my disabilities.
When I was listing my medications for him. I included my marijuana prescription, he askes me what it’s for and I say “It’s part of my crohn’s treatment and also helps me with the chronic pain from other conditions.”
Immediately he aggressively starts grilling me about “What evidence there was.”
I try to calmly explain, that to start with, my scopes and symptoms improved dramatically after including it as part of my treatment. Before I can even follow up with the studies I had read and brought my doctor, he interrupts me, again very aggressively, demanding on what evidence my doctor had prescribed it. By this point, I’m seriously annoyed. I had come here because everyone had told me he was good. A good doctor would have keyed in to the important part of what I was telling him, that I got my life back after starting it as a treatment; that my inflammation and scopes both improved, I had less ulcers, I had less tearing, things were getting better. A GOOD doctor, wouldn’t argue with me about my medical history when he didn’t have access to ANY of it.
Annoyed now, I started listing off the studies I had read as the evidence. The same studies I had brought with me to my doctor in Ottawa. The same ones that had finally convinced me to bother giving it a try.
Then the goalpost shifting started: “But what’s the protocol.”
“That’s not what you had asked. You asked for the evidence.”
“Protocol is evidence!”
“No. Protocol is based on evidence or it should be, but takes time to evolve and respond to new evidence as it becomes available and recognized. It doesn’t change instantaneously, especially when there is politics involved. You had asked about the evidence. I was explaining that. You want to know what protocol he was following, ask him.”
“Well you need to understand, that I’m the doctor and you’re the patient.”
If you’ve been reading this blog or my book, you recognize just how big of a mistake that was to say to me. Between doctors almost killing me, ignoring my symptoms until severe, not to mention the amount of time I help others with getting doctors to actually listen and look into conditions despite their demographic data, my life is practically a testament to how much bullshit is in that phrase.
“And you need to understand that I am an active participant in my medical care and if you have a problem with that then you need to refer me to another doctor. I’ve been dealing with this condition for over a decade, as well as all the other ones I have. I keep up to date on current studies and data, and while I may not have a medical degree, I am trained in reading and understanding them. My former doctor worked with me and took advantage of the fact that I stayed current on a lot of the research and would bring him interesting finding I had come across. He worked with me to find the best way to treat MY crohn’s, especially when it became obvious that I wasn’t sufficiently responding to standard protocol.”
“Well I’m an expert in Crohns”
“So was he. What’s more, HE was considered one of the best Crohn’s guys in Ontario if not Canada itself and if I had had any option in the matter, I would still be directly under HIS care since HE earned my trust and respect. I’m not getting these studies from pro-cannabis websites, or some pseudoscientific channels. I’m reading them in the New England Journal of Medicine. I’m reading peer reviewed studies. When I find articles, I follow them back to the original studies rather than rely on inaccurate reporting. I take most of what I read with a grain of salt, and when I find something that seems worth pursuing, I brought it in to discuss it further and weight the pros and cons. I’ve had my conditions worsened and almost died as a result of doctor’s not believing me or deciding that they knew better what was going on inside my body than I did.”
“How have they almost killed you?”
“By prescribing medication that was counter-indicated for my conditions, by disbelieving me about what was happening and ignoring it until the problem had become severe, they’ve also directly contributed to my disability by ignoring my pain till it had already caused severe damage to my right hip. By deciding I’m a drug seeker, despite the fact that I actively avoid opiates unless the pain has become too severe to manage, and so forgot to prescribe a taper dose and forced me into unsupervised opiate withdrawal. The fact is that there is significant evidence that suggests that doctors disproportionately don’t believe the severity of women’s or people of colour’s symptoms.”
“I think maybe we got off to a bad start.” He finally admits.
At this point, I’m no longer feeling charitable and just respond that yes, we did.
He starts asking me instead about my remicade, which he seemed confused about why I was still receiving it if I had moved here, until I mentioned they had transferred my prescription to the local clinic.
I continue giving him my medical history, including the various prescriptions I had been on previously. Much to my surprise, he seemed unaware that Remicade was also a treatment for Arthritis. Though all of a sudden he was very concerned about me being on prednisone. After all, I probably don’t know but prednisone causes damage to the hips.
*stares at camera*
I am aware of that. In fact prednisone is the reason my right hip joint is currently without the insulation of cartilage and is basically bone on bone. I have osteoporosis.
At first he seemed about to tell me to go off of it since my CT hadn’t showed anything of concern. My cold reminder that CT or not I had been in severe pain and now I was not, at the very least caught him short, and he suggested instead a fast taper of reducing it by 10 mg instead of 5, and possibly every 3 days instead of every week.
For those unfamiliar with it, prednisone is a cortical steroid, which means that high doses, like those administered over the last four days in the hospital, as well as those I was currently taking orally, can reduce the amounts naturally created by the body. Too quick of a withdrawal can actually cause a flare up of the conditions it is treating as well as other autoimmunes, it can cause severe withdrawal symptoms, including life-threatening ones, and it can actually cause joint damage all on its own. There is a reason why the regular schedule set by medical professionals is what it is.
My rheumatologist is aware of my being on this medication, as is my family doctor. I too am familiar with the risks and do my best to mitigate them as much as possible. In the mean time if my GI could focus on the part of the body he is actually there to treat, I would be profoundly grateful.
I changed the subject to that of my mysterious esophageal cyst instead. Mentioning that it had been found 7 months prior and still had not been followed up on at all. At least that he seemed prepared to accept as being unreasonable and so scheduled a follow up with me for a few weeks later to schedule the scopes needed.
I left the appointment disappointed, and furious, but hoping that maybe the next appointment would go better. I find out on the 26th if that’s the case.
In the meantime, I’m despairing over the fact that this is who I seem to be stuck with in the meantime and determined, that once I’ve confirmed that I don’t have lymphoma, that maybe I can see about finding a new doctor.
Then that night, I learned that not having a competent GI may be among the least of my problems.
Instead, I was facing actual physical torture.
The Ford government, among their proposed budget solutions for our underfunded medical system, is to cut services further. Specifically, he wants to reduce unnecessary imaging tests, and also why not save money by no longer covering the cost of sedation during colonoscopies.
That’s right! My government wants to hold me hostage. Either I find a way to raise enough money to cover anaesthesia or face the pain of having a 6 foot hose shoved up my damaged, inflamed, and delicate intestines.
I’ve had at least 14 colonoscopies in the last 12 years. All under sedation, and even despite that, there have been times when it was excruciating. Part of the procedure involves blowing air through the hose in order to get a better picture. This process is extremely painful for me as it causes my intestines to stretch and sometimes it causes micro-tearing of the delicate tissue.
In the past, even a pinky finger in the anus has been excruciatingly painful. Doing a colonoscopy on someone like me, without sedation is unequivocally TORTURE. Moreover, it dramatically increases the risk of perforation, of heart attack, or some other severe reaction. It will likely result in less useable data since a patient screaming and tensing in pain, will likely not be still enough to allow for useable pictures.
I spent the day alternating between hyperventilating and crying, before finally coming up with the one idea that gave me any peace: if they go through with it. If the various organizations protesting this decision are unable to stop it in time, then I will undergo my next colonoscopy unsedated live and on camera. I will consent to having the entire procedure live-streamed so that everyone who allowed this to happen can know EXACTLY what that means and what that looks like. If I end up more severely disabled, if I end up dying, if I end up needing surgery. They will see that too.
Over the following few weeks, it seemed to be one hit after another. They plan on making cuts to ODSP. Rememeber, I’m already living with my parents because it wasn’t enough to live on. I still need to ebeg from time to time just to make ends meet despite this, and to be able to get my medication.
Medication which is now even more difficult to get despite legalization since all the medical dispensaries that provided more affordable options have been shut down. The recreational shops licensed by the government have their prices set to ridiculous levels, making them completely inaccessible. In the last month, I’ve been working off a much smaller supply, which has been difficult and made some of my symptoms more difficult to manage.
They are changing the definitions of what constitutes disability, without making the changes clear enough to know whether I will still qualify.
They are changing how much those on disability are allowed to earn in addition to their monthly stipend and increasing how much our stipend is cut by once we’ve reached those limits.
In addition to all that, both the Premier’s former and new chief of staff have said that they are not trying to prevent ODs. They’ve suggested that Fentanyl is the “best thing to happen to addicts” since it helps reduce misery. All this by the way was part of the same series of comments suggesting that there policies are not the result of ignorance surrounding addiction, but an active campaign to encourage more addicts to die. They’ve also made it pretty clear through their policies that as far as they’re concerned, patients who receive opiates and addicts are synonymous with one another.
Their constant attacks on poor people, on disabled people, on vulnerable people, paired with the coming federal election and the scandals coming out from Ottawa have made me profoundly afraid for my life and well being.
The Nazis T4 project, which was the justification for building the first death camps, in the interest of providing a way of euthanizing disabled dependants of the state, started with very similar reasoning and arguments. Already in Ontario, there are patients who are pressured into accepting legal euthanasia by being denied home care and treatment. With the threat of torture hanging over my head, already having my life being put in active danger, it’s not a matter of if, but how far will they be allowed to go before they’re stopped and when?
In addition to all this, I’ve also been trying to help a friend who has also been jerked around by her doctors who are ignoring serious symptoms due to their own prejudices.
On a more positive note, the beautiful weather in the region, and my parents agreement to allow me my own section in their garden has at least given me something else on which to concentrate rather than my threatened demise. I’ve been working hard on creating a raised bed. I’ve had to go slow do to my body restrictions, but over the last few weeks I’ve managed to build a retaining wall out of cinder blocks I’ve collected from people getting rid of theirs. My parents have ordered a bunch of soil which comes tomorrow, and I’m working on starting a bunch of seeds.
I’m also living with my Catholic family, so while they have accepted my atheism, I still participated in a lot of the holiday fun and celebration outside of church. We painted eggs, and I helped with making huge amounts of traditional Polish Easter food, like Żurek – a soup made from fermented rye flour.
I’ve been running around so much this month, that I’ve barely been in my room let alone on my computer. With luck things will slow down some soon so that I can actually write all the posts I have in my mind.