Tuesday, March 21, 2017

When The Oath To Do No Harm Is Broken

It's a Tuesday morning. I wake up, and once I come out of the fog, I remember today's the day; I have an appointment with a new cardiologist.

For many people this would be a pretty mundane thing. Yet all of the sudden I am filled with worry, and sheer anxiety. Seeing a new doctor often makes me nervous for weeks before. Same with seeing an old doctor, with the exception of the few I trust.

Why am I fearful? Doctors took an oath. An oath to do no harm. And I often feel traumatized by my past experiences with them. I have been let down so many times before, in so many ways.

My very first bad experience came right when my symptoms began. I went to my GP at the time, who told me I was just out of shape and that my depression wasn't well controlled, despite me telling her that something else was definitely wrong. This became a pattern, repeating itself so many times until I thought I was probably just imagining things.

People would tell me, "Doctors are just people", and that I shouldn't be so nervous. "They're not Gods!", they would say. But to me, they were. They were the ones who held my life in their hands. My future. They were the ones with the power to change my life, by either fighting and advocating for me, or by shrugging their shoulders at my problem and leaving me on my own. The latter is what happened most of the time.

So I lost faith in doctors, but I would keep going to them. I wanted not only to function and be able to live life again, but to not be in pain every day. Each appointment, I would put up my shield and prepare myself for the blow. Even with a little chance of hope in the back of my mind, I would prepare myself for a painful visit. I did not expect them to help me. I did not expect to come closer to answers. I did not expect them to keep their oath of doing no harm. Because at times, their words replayed in my head for days. At times, I had nightmares about them. At times, they made me want to give up, because of how easily they gave up on me.

So to all you future doctors in med school, please remember that you will be holding someone's life and future in your hands. You will be holding someone's ability to go to school and go to work in your hands. You will be holding someone's freedom in your hands. We're breakable. Please be careful not to drop us.

Thursday, March 16, 2017

Life Lately

Hi all.

This past week has been full of big decisions and there will be many big decisions to come in the following weeks. With the advice and support of my most trusted doctor (my endocrinologist), we have decided that it's time to travel to the US for medical support.

I have felt many times that our medical system has failed me, but hearing my own doctor telling me that feels like a whole other story.  She believes that maybe I'm dealing with something genetic, possibly some sort of mitochondrial form of diabetes. And so she is helping us decide exactly where to go in the United States.

I've expressed this before; Having so many problems in so many different systems of your body gets extremely frustrating when you don't know what's causing it. My doctor told me that even though there may not be any treatment options for whatever I have, I should know what it is. And that meant the world to me.

So despite this system failing me, and us making the big decision to leave the country for help, we're not alone. I have a very small team, but it's a pretty great team. I will try my best to keep my blog updated on this new chapter.

Monday, March 13, 2017

Things I Learned While Inpatient

DKA can happen in a split second. I learned that the hard way this month. On February 28th I was admitted to the hospital in DKA, with a goal of getting me out of DKA, and figuring out the cause for the horrendous headaches and nausea that I've been dealing with for the last month. The stay turned out to be 11 days long, and although we didn't get very far in regards to answers, I did learn some other things...

1. Patience. 

If patience is a virtue anywhere, it's in the hospital. Things happen at a snail's pace. And there really isn't a thing you can do about it. So patience is forced on you. I happen to be the one of least patient people, so this isn't necessarily a bad thing, because I can always learn some patience.

2. Worrying doesn’t change or solve anything.

While you're stuck doing all this waiting, you're generally also doing all this worrying. "Will this consult go through?" "Will this doctor help me?" "Will this test be scheduled while I'm inpatient or outpatient?".... I can go on and on. But the truth is, is that you don't have all the power while you're in the hospital. There are rules, protocols, and logistics in place, and they are what they are. Worrying about them won't change them. What's going to happen will happen, and you have to try not to torture yourself while you're waiting for it! Note to self.

3. Nurses are the best.

 During this stay, I had the most special nurse. She took the time to come into my room, sit in a chair, and genuinely ask how I'm doing. We had a long talk, and by the end she decided she wanted to advocate for me. She did what she could to get me the help I needed while I was in there, without me even asking. And that meant the world to me. It meant the world to me the next day when I was sobbing after a bad consultation, and she came in and said "Talk to your Aunt Maggie", and comforted me and encouraged me. As you can see from one of my last posts, I have a huge appreciation for nurses. This was one of the most incredible nurses I've ever met.


  4. Good veins are hard to find. 

As a pale, young woman, I should have good veins. I should have great veins. However, I just don't. They are thin, they slip and slide when you try to get them, and they have no blood return. Nurses hate taking blood from me, and they especially hate inserting IVs. My first IV was hard enough to get in that they had to bring a guy in with a special ultrasound-like machine to find my veins. It was super cool and worked like a charm. However, while I was there, my doctors wanted at least 2 blood tests a day. The nurses were not very happy about this, because for some of them, I'm an impossible stick. They would ask the doctors repeatedly "Are you sure we really need 2 blood tests a day?", because it seemed that this was torturous to them. Needless to say, my arms are black and blue everywhere.

5. Canned peaches are really good.

Not much else to say here. The rest of the food is nothing to write home about.

6. These are the times when you find out who really loves you. 

 Being in the hospital sucks. It's scary, it's frustrating, and it's boring. Your friends and family who check in on you are your world.