Catching up on #HAWMC Days 1-3

Sooo... I realize it is April 3rd... and that the Health Activist Writer's Month started on the 1st... and that I'm late. Oops.

That's what catching up is for, right? I thought so too.

Day 1 - Getting Started!

Why do I write about my health online? A couple reasons, actually. Writing about my health, helps me to look back and see what I was thinking about at the time. Sometimes it works so much better than a log book! I write online because it allows me to share.. and typing is so much faster than pen and paper. I got started by reading other blogs. They showed me that sharing wasn't a bad thing. Often times it was more comforting than anything else.

Day 2 - Introductions

My condition is Type 1 Diabetes. I was originally diagnosed as Type 2, two days before my 29th birthday. It was six years before I was able to get it corrected. Five things I would like you to know about my condition and activism. 

1. I didn't want T1D (type 1 diabetes), but I am thankful for it.  It has opened me up to a whole new world of awesome people.
2. T1D is a pain in the backside!!  and fingertips, and stomach, and head, and bank account. 
3. I am the only one in my family with T1D... and that was the best news !
4. My activism is just getting started.  In fact, next weekend is my second JDRF walk, but my first being on the committee.  I am excited.
5. My sharing on this blog varies.  Most of the time it is about my diabetes, but sometimes I just have to brag about my daughter (I'm one proud Mama Bear).  Either way, I hope you get something from it.  Even if you didn't, know this.. *I* got something from writing it.

Day 3 - Wordless Wednesday

A picture that symbolizes my condition and my experiences... This is a tough one..

 

This picture may seem a little odd.  Let's look at it this way.. the ocean is HUGE and no one can see the other side from where they stand.  The possibilities are ENDLESS and there so much yet to explore and learn.  Just like diabetes, we can't see the cure from where we stand, and there is so much yet to learn.  My experiences have been both great, and horrid.  Last but not least, this shows I'm not alone.  I am only one little drop in this ocean, and without others I would have dried up years ago.

Psuedopapilledema - or what I like to call "An Outie"

You ever hear of a particular medical anomaly and wonder "What the.. ?" Well I have.. and Psuedopapilledema is one of them. I call it an 'outie', you know.. like a belly button? innie vs. outie?

Let me give you a link:

Medical-dictionary.thefreedictionary.com/pseudopapilledema

There are many definitions listed there from many different medical dictionaries, but the most common definition is : anomalous elevation of the optic disk. Typically the back of the eye has a valley in it, that looks somewhat like a drain. That is where all the nerves come together and exit the back of the eye. Sometimes, usually if there is something pushing on the back of the eye, this valley turns into a mountain

A few years ago we switched eye doctors for my daughter. I was a bit grumpy about it because I liked the one we were using, but this new one (we'll call him Dr. I) was covered by her father's insurance. The first visit was very thorough. They even did a scan of the back of the eye. That's where the fun started. The tech did the scan, but when the doctor looked at it he said it was inverted and needed to be redone. So they re-did it. When he viewed the correct scan, the questions started, and my fear increased. The main question was about headaches. Did she have a lot of them? Did they not like to go away? Thankfully, the answer was no. Headaches are very rare, and are usually fully explainable (like when she was hit in the head with a rifle).

So Dr. I was majorly intrigued and excited. You ever see a doctor get excited about something? It's kinda fun.. and scary all at the same time. He said he had heard about this but had never seen it in real life. He also said that for the next few years we would run a new test each year and monitor it to see if there was a change, but that for the time being, there was nothing to worry about. If persistent and frequent headaches started to call him IMMEDIATELY. We have done five different tests and the full scan twice now, and nothing has changed. Not the shape or size.

THIS is what got him so excited:

This 'mountain' is normally a 'valley'.

We talked a lot with the doctor as to why this happened, what causes it, and what we can do about it. Since she is not showing any signs of a brain tumor (the typical thing that pushes on the nerve), he figures it is a genetic condition. More than likely, her optic nerve is longer than normal and ran out of room behind the eye, so it's pushing into the eye.

To put is simply... my daughter has a lot of nerve.