Thursday, 6 April 2017

Initial Thoughts on the Complex Chronic Disease Program

Image Credit: Background by Darko Stojanovic on Pixabay.

The Build Up

When I moved to Vancouver, one of the underlying hopes was that I would finally be granted the opportunity of seeking a legitimate answer and treatment plan for my health. The time before I moved was spent with a big question mark about what was plaguing me. I was healthy one day and then I wasn't.

The plan was reasonable. Get on a plane, travel across the continent, find a place to live, find a job, and get settled in a new life. From there I would poke at my options for diagnosing and eventual treatment. It had been a plan years in the making and it seemed as though it would pan out in spite of everything.

I needed help for that. I wouldn't have done it without the help of two friends that I will forever be indebted to. Once I was set loose in Vancouver it was time for me to rise to the occasion instead of those supporting me. I got a place to live. I got a job. I had interviews lined up on all my days off. I was getting to know the people around me.

It was difficult, of course. Most days were spent teetering the balance of just keeling over or persevering. I was making it, though. One day at a time. This changed when I received a lovely bout of laryngitis.

Like that, the progress I had spent years building towards evaporated. I could barely go around the block, let alone go to work. I coasted on "savings" for a month before realizing that I was not getting better. The laryngitis had passed but the loss of functionality did not. I never regained the work I had put so much effort into.

This put me into an awkward position. At this point in time, I no longer had a support structure and nobody to turn to. I lost my job. I couldn't make it to any interviews. It seemed as though I was going to finally lose for the last time. In a last ditch effort, I made the trip to a welfare office and made my case for why I deserved social assistance as a newcomer to the province.

I was granted welfare in large part due to the circumstances of why I moved across the country. My health insurance was expedited and I gained access to the healthcare system of British Columbia. Within the first week of having this new power I made my way to an ER, unaware that such a thing as "walk-in clinics" even existed in Canada.

There, I was given a chest x-ray and told I had asthma. I do not have asthma. The resident that took care of my case gave me a prescription for an inhaler that I fulfilled mainly because I wanted to see if it would do anything, even as a placebo. It did not.

The Next Step

This led to a string of visits to walk-in clinics. I visited four different clinics in search of a referral or an answer. While I was passively seeking an answer to the past several years of my health, I was primarily seeking a quick fix for the effects from the laryngitis. For several months, I put my hands on my ears and shouted "la la la" at the idea of trying to tackle the bigger problem.

As you might expect, this did not lead me anywhere great. I learned that walk-in doctors were not good at what they do. I was told everything from being labelled a drug seeker to a blatant liar. Doctors that said they'd follow up did not. Doctors that said they believed me did not. The welfare office was beginning to stress the importance of finding a permanent doctor and provided a sheet of doctors to contact that were accepting new patients.

None of them were accepting new patients.

I had moved in June of 2014 and it was now September. I was surviving off of the measly welfare cheque and my writing work, a network that was still intact at that time. A friend in a nearby city got me hooked up with a magazine and I put finding an answer on hold when I received an opportunity to be a media reporter at the International Film Festival. I had dreamed of getting media credentials at an event within the first three years of moving and had achieved it within six months.

I thought, naively, that maybe I could take advantage of a mental high and somehow will myself into being better. Every fiber of my being was thrown into this, requiring in-person trips to another city and to the film festival in a hectic week. In that week I passed out on the SkyTrain, I skipped out on multiple movies, and I didn't stick around to build up rapport with the magazine staff.

It was a miserable, miserable week. It did more damage than it did good, and it took me weeks to get "better".

The Precipice

Now it was December and there was still no good news. I decided it was time to try another walk-in clinic, again. It was time to try another doctor, again.

I turned to Google and searched for walk-in clinics, crossing off the ones I had already gone to and had poor experiences with. Then I found a clinic that was generically named "The Doctors' Office". I thought it was a gag.

It wasn't. Whereas I would ordinarily just hop onto a bus and check it out, I noticed this clinic was an actual, well, doctor's office. I rung them up and asked the golden question: "Are you accepting any new patients?"

They were. I was quickly registered and before I knew it, I was a week away from meeting with a doctor that had just started accepting new patients. I was skeptical. Of course I was. But I went, and I met with this doctor, and the effort paid off.

In this meeting, I had taken a chance. I told her that I wanted help for years of health woes but that I wanted more immediate help with the effects of the laryngitis. She was on-board. A blood test was requisitioned, another chest x-ray was requested, and I even got to do a heart stress test (which was awful, by the way).

When the calendar turned to 2015 I met with this new doctor again. There wasn't anything evident that would explain what was going on. I wasn't ready to tell her my thoughts and she recommended an internist. I accepted, and I went in February.

A New Chapter

This is where the Complex Chronic Disease Program becomes relevant. In this appointment with the internist, I was offered something rare: Two hours of time to talk instead of ten minutes. I wrote up my story. I told the internist everything. I was putting everything on the line.

The result of that meeting was bad, but hopeful. I was told in no uncertain terms that modern medicine likely would not help me. That this was going to get worse instead of better. And that I needed to prepare for the worst because even a definitive answer likely wouldn't lead anywhere good.

That's not great to be told, but it was great to be believed. The internist wrote his report, attached my story, and sent everything back to my new doctor. When she read it, she wanted to talk. She didn't dismiss me, she didn't fire me as a patient. Instead, she told me she would do her best to find an answer.

The first thing she did was refer me to the Complex Chronic Disease Program with the behest of the internist. I was aware of the program but skeptical of its value; in the short time it had existed, it had lost its director and was having funding problems. My doctor told me it would take months before I would even find out if I were accepted into the program.

A few months later in April, I received a letter in the mail. I was accepted... but it would take a year before I would be seen. In the meantime, my doctor decided to send me to every specialist under the sun. A psychiatrist, a sleep specialist, a rheumatologist, another internist, a neurologist. Nobody could give me an answer to what was wrong. Nobody could tell me what would help.

Nobody was willing to experiment with treatments due to the liability risk. No medication, no injections, no therapy, nothing. With no answer, there was no access. I was always given a clean bill of health mentally and there was nothing apparent physically... just that it was obvious something was wrong. I couldn't handle stress tests. My muscle weakness was excessive. My cognition was easily reduced.

I chased every lead wherever they went. I had no choice. I needed an answer, if not for my sake but for the sake of continuing to be able to be supported by the welfare system. I was not on disability, and needed to prove my inability to work every few months. My case manager didn't believe my exemption forms, constantly questioning my legitimacy and whether or not I was telling the truth. "Unknown pain disorder" wasn't an applicable answer in the eyes of the government.

The rheumatologist told me to put fibromyalgia on my forms. So I did. I still need to refill the forms every now and then but it's less rabid now.

The neurologist told me it was a mitochondrial disease and referred me to the metabolic clinic. They denied me because I'm not a child and don't have a family history. Canada is ill-equipped to deal with mitochondrial research and treatment. Liability law prevents unrelated medical professionals from treating a mitochondrial disease.

What Next?

I was in a pickle. It was a year later, 2016, and I still hadn't seen the medical program. They had contacted me and told me it would be two years... or maybe never. I was operating under an incorrect diagnosis of fibromyalgia and could not gain access to the research and treatment necessary for the mitochondrial disease. I was trapped.

In December of 2016, I received a phone call. The medical program was ready to see me. I accepted, knowing that this was what everything hinged on. I would never be able to apply for disability would a questionable diagnosis and the patchwork of specialists I had gone to over the past two years. They told me what to expect: a phone interview with a nurse, an in-person meeting with a nurse, occupational therapist, and social worker, and then an in-person meeting with the program's internist.

Reasonable. They needed me to read and watch some material about the program prior to the phone interview, which I did dutifully. The phone interview two weeks later was... something else. I felt devastated after the conversation. The nurse did not care about my story. She was not interested. Leading questions were asked. I was asked if I had any questions of my own. The answers I received told me in no uncertain terms that what I needed from the program was not what I was going to get.

I was told they wouldn't advocate for me with other specialists or programs, they wouldn't help me with disability, and I would have to do things their way or no way. All this was covered in 15 minutes of what was supposed to be a 45 minute phone call.

The In-Person Meeting

My in-person meeting with the trio of program staff was scheduled for two months later in February of 2017, and I was told I would need to fill out a booklet of questionnaires beforehand.

Reasonable. I did that. I took it with me to the meeting. They never asked for it. I filled it out for no reason. However, the actual appointment went well. The nurse, occupational therapist, and social worker were all kind. They didn't ask leading questions. They paid attention to what I had to say. I have no complaints about this portion of my initial participation within the program.

An appointment was scheduled for the doctor a couple weeks later and I waited for that. I met with the internist and found the meeting somewhat disappointing. It was confirmed that they wouldn't advocate for me with the metabolic clinic. I was told it would be a dead end to pursue treatment for a mitochondrial disease in Canada, especially with only government insurance to rely off of for the payment of treatments or research.

So she "redirected" me into just sticking with the fibromyalgia diagnosis and adding chronic fatigue syndrome and central sensitization disorder to the list. Instead of what was the likely culprit, I now had a laundry list of "fuck if we know" diseases to my name that couldn't be cured and the treatment would only maybe indirectly help me.

The internist provided me a lot of material, none of which was applicable to me. The material that could be relevant was material I had already explored within the first year of my health's downward spiral. I was signed up for most of the program's treatments, although the options were restricted.

I'm going to see a physical therapist, once, who will show me exercises. I won't work in an actual PT clinic.

I'm going to see a dietitian, once, who will tell me what to eat. It is likely I won't have access to what they recommend.

I was signed up for all their therapy groups that have several months of waiting lists to contend with, and are all group therapy sessions. I don't gain anything from groups. I don't relate to people with fibromyalgia. I've tried support groups before to no avail.

In Conclusion

Since then, I have seen no one from the program and have not been contacted by anyone from the program. I was referred for "trigger point therapy" and have not heard from that either. They expect me to begin the disability process soon with these new diagnoses and they'll back me up. That's generous of them.

I want to be grateful for that. People with "unknown" diseases have a success rate of less than 20% when applying for disability and are often embroiled in the appeals process for up to a decade. Success rate with the backing of the program is over 80% on the first try. That's good. I need disability; it will help me tremendously. 

But I feel trapped. If I take this plunge, I am putting the nail in my coffin. I'll never be able to receive actual help for what is wrong with me. I'll never receive real treatment. I'll perpetually need to deal with doctors telling me to think good thoughts and I'll feel better. I'll perpetually be prescribed anti-depressants for the purpose of numbing me to the pain that instead only imbalance my mental state which is already fragile. 

It's an empty victory. 

I thought the Complex Chronic Disease Program would save me or give me a future. 

I don't know if it will do that. It may be that I've finally reached the dead end I keep speaking of. 

It may be that my worst case scenario of waiting until I get so bad I can't go on anymore will come to pass.

I'm not ready for that. I can't keep wasting away. 

But I have no choice. 

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