My IUD Story

Old news - but still an important part of my medical history when it comes to women's health. 

Check out my vid here. 

Health Care (Part II) - Transplant List

Have you ever really tried to envision what life may look life for someone who requires an organ transplant?

Really give in and put yourself in another's shoes.
I have not yet been (I hope to never be) put on a transplant list for a failing organ.
I had a roommate at the children's hospital once who was my age at the time (17) and who needed a new liver. She was diagnosed with Ulcerative Colitis as well as Primary Sclerosing Cholangitis. Her Colitis was fairly stable but her liver was failing. I was having the opposite issue - my liver was relatively stable but I needed by large intestine out.
She needed a new liver.
She required a new liver in order to survive. To stay alive.
She deserved to be on that transplant list.

Can you really imagine this?

We live in a world, right now, of easy fixes for everything. 'I own a car and it is broken so I deserve to have it fixed because I cannot drive without it'.
'My washing machine broke down. I need a new washing machine because daily life requires me to have a functioning washing machine'.

What if you had to wait in line and there were only a certain number to be given out... and you never actually get what you required?

Our world right now has confused the line between needs and wants. But whatever we feel we need - we believe we also deserve.
But what if you truly needed something? A genuine necessity, a deserved necessity, and found out you would never receive what is required? What if you could not get what you needed because of a lineup?

We are all taught this line of thinking: if you need it, you receive it.

Could you picture being denied your LIFE?

Your life, reduced to a set of numbers, statistics, money. Triaged by whatever they see on paper - age, other illnesses, level of risk, complications, habits, history of addiction or mental illness.

The ultimate question: how do people prepare themselves when being placed on a donor list? How would we come to terms with the mindset that physicians say we need a transplant to continue our life, but that it may never happen? So we live our lives through the age of easy fixes only to find out that we may never receive something we sincerely deserve.

When we really break it down, although we have a very good policy and set of rules and requirements, it still sounds insane. It sounds devastating.

Health Care (Part I) - Maintenance

Health care has been heavily on my mind recently. Maybe because it has been spoken of at length during our provincial election. Maybe it is because of recent appointments or changes bound to come in our system. It has definitely been affected by the video that went viral about a poor mom who went undiagnosed for two years. Either way, I have been losing sleep over many different issues.

In this Part I about our health care, I wanted to bring up the idea of maintaining health and what we are told versus what can actually be carried out.

The ill and disabled are often viewed as non-contributing members of society. I won't get into all of the different reasons why this is absolutely not true.
What I do want to talk about is the fact that that thought tends to encourage the idea that funding should be cut for those people because they don't contribute.

When I was young, it was very normal to have regular appointments with a family physician. Not just once a year. We were all encouraged to see a physician once every 6 months, or 3 months for those who have some sort of chronic illness.
After being diagnosed with Ulcerative Colitis, I was told that I would be essentially married to my physicians.

It was vital to see my doctors every three months. Not only if there was an issue. Not just for prescription refills. A regular appointment - to maintain. A real checkup where we TALKED about recent symptoms, potential side effects, general mood, sleeping and eating habits, and any pain or discomfort. You would walk in and every single time you would be weighed, measured, and have your vitals checked. This was policy. This was law, as I understood it.

This does not happen anymore.
We have lost our ability to maintain the health of patients.

Whether that is because there are too many patients and fewer doctors, or lack of funding, or the rise of patients with google-degrees demanding thorough care every week or two, or the cap on medical school residents ... I don't know. I don't know exactly which factors are causing the most unrest. What I DO know is that maintenance is no longer a priority, and that is confounding the problem. I also know that, in my personal experience, my doctors would LOVE to provide the care we once had. For some reason, however, they have lost that opportunity.
So patients, like myself, are left to fend for themselves until something goes really wrong. We are encouraged to take care of as many of our symptoms and side effects ourselves until we have our yearly follow-up. We have lost the maintenance - which means we may be suffering for months and months, using the Emergency Rooms when we have lost the ability to deal with the issues on our own. My doctors and specialists have always gone above and beyond for me - for what they are able to provide. Things have changed. Their hands are tied.

Now, instead of tackling symptoms and side effects as they affect us, and preventing or dealing with those fallouts every three months, we have to document them and give our doctors an entire LIST of issues at our yearly checkup. 
What does this result in?
A ONE-ISSUE-PER-VISIT policy. (I will discuss this in another post).

What would happen if we were able to get back to an attitude of maintenance? What if we put the priority back on monitoring patients and helping them tackle issues that can be taken care of if we are all seeing each other regularly?
When that system was working, guess how many more chronically ill patients were still able to work and be productive?

As much as we, chronic illness patients, know our bodies, we are not physicians. We don't always know that the recent fatigue we have been feeling, along with the rise in muscle twitches, and pain in our legs and ribs and joints, can actually be signs of something bigger; something dangerous. So we write down these symptoms to ask our specialists about the next time we see them (in 8 months).

I am not placing blame here. The blame is spread all around. What I do know is that maintenance and monitoring can help every single person. I also know that cuts to funding and caps on doctors and threatening privatization are all going to make this problem a lot larger.
On the up-side - if it gets worse, you won't have to worry about us chronically ill patients anymore. We may all simply die off slowly, in our beds, trying to fend for ourselves while our bodies kill and torture us... All while we try to decide whether or not our symptoms warrant bugging our specialists about. Or become destitute trying to pay for health care.

(Okay that was a bit dramatic, but I hope I am getting my point across).

Somehow, we need to get back to an attitude where we would notice and take care of subtle changes in our systems before they become these monumental problems that take years to rectify.

Maintenance is key. It is the key to better health care, better productivity, faster diagnoses, better medication management, and catching issues before they become dangerous or even deadly.

The Correct Way

What is the best way to handle illness? What is the correct way to go about your daily life once diagnosed with a chronic illness? What is the best way to deal with healthcare professionals, cracks in the system, or the shortcomings of patient care? How do you stay true to yourself and push yourself not to be a slave to your illness?

There is no 'right' way.

Dealing with chronic illness is much like dating. You might try different approaches at different times, you might be stronger at some moments and weaker in others. There is always compromise, stubbornness, determination, and wavering. Sometimes you want to be done entirely but can't seem to walk away. You have good days and bad days. If you have multiple illnesses you will often have a different relationship with each illness and how to handle it, not to mention your attitude towards it. It is a constant and daily struggle to achieve the balance of cooperation, compromise, maintaining your own identity while always carrying around these other labels.

There is no right way to handle it. Every single person is different and every single day is different. Don't beat yourself up. ❤

Potentially Good News

It has been revealed that a study, performed with mice, has had shockingly positive results with the eradication of several types of Cancer with a Cancer Vaccine.

Essentially the vaccine is injected directly into a tumor, activating the body's own T cells to recognize and eliminate the Cancer cells in that specific tumor. Then, once that tumor has been eliminated, those T cells travel throughout the body, targeting other tumors that have the same Cancer cells that were present in the initial tumor.

The study has led to beginning clinical trials in humans.

This could be huge.

I do have to say that I am heartbroken at the overwhelmingly negative reaction on social media. I am not so naïve to think that corruption does not occur in levels of medicine and medical research, but the amount of people who immediately put down a potentially monumental advancement is staggering. The arguments of 'suppressing the cure', that no one but the filthy rich will be able to afford it, the idea that 'Big Pharma' will never let it reach the public, or that 'Hemp Oil' cures all types of Cancers but that it isn't acknowledged because 'there is no money in it' - are numerous. And tragic. I believe it is healthy to have a small dose of cynicism, or realism, or to be skeptical until the human trials have been successful and we start seeing positive results in the lives of everyday sufferers, but this kind of discovery; this kind of research, is a positive thing!!

I wonder how the anti-vaccination movement supporters will respond to such a study...

Year End Receipts

There are some purchases that we make that are directly for my health. Over-the-counter medications like Gravol, Robaxacet, and Motion Medicine Muscle Cream, then dietary items like Boost (when my intestines are rejecting food), the canes that I use for walking on days when my hips have complete bitched out, as well as parking payments at the hospital for appointments and trips to the Emergency Room.
We always keep these receipts, if nothing more than for our own records.

So, for 2017 (which was a quieter year for appointments overall), we spent about $300 just on parking at Foothills. We spent just under $1k on things like Boost and Gravol, and then another $1k on other health-related items like optometry, medicinal therapies currently not covered, and portions of dental that weren't covered.
A thousand dollars is a LOT of Gravol and Boost.

Now - I am lucky and I have absolutely amazing coverage overall. My pharmaceutical medications are almost always 100% covered. So the amount that we paid out of pocket is a tiny, little, miniscule fraction of what our coverage pays for.
I am more than happy to spend $2k+ and have everything else covered.
Whenever I feel like complaining about coverage, slap me! Because we are very fortunate. Canadians are fortunate. Our system has MANY flaws, the system is broken in various areas (help for the chronically ill and those in chronic pain being one), but I still 100% appreciate the system we DO have in place. Improvements need to be made, absolutely, but not a complete overhaul. We have the base system in place, it just needs some tweaking ;).

I am interested to know what my prescribed medications WOULD HAVE cost us if we did not have coverage. Maybe I will look at that later.