23 March 2012

Anyone have those days

(Vent ahead!)

Anyone have those days where you swear the universe is aligned to give you a terrible day?

I'm having one of those days.

I think my site is blown. I know it's terribly bruised. It also might be hitting a nerve.

My heart is having a freak out day. Part of the heart problems is fainting or nearly fainting, and I've been having that sensation all day. I think I passed out earlier this morning, since I was sitting on the sofa watching the news and the next thing I remember is waking up and sprawled out on the sofa. Sitting up makes me dizzy.

I don't think I'll be exercising today.

22 March 2012

Outing

In some respects, I think I have a unique perspective on disclosing health issues. I have more than one health issue to disclose, and I've watched my older brother and younger brother both deal with disclosing.

I do want to say, first and foremost, that every person has the choice, and it is their choice. At no point should anyone be forced to disclose health issues or be silenced about their health issues.

Since this is the internet and there is some veil of anonymity, I would like to share my side of my sibling's and my disclosures, without going into too much medical information.

My older brother was diagnosed as type 1 when I was in second grade. He was in fifth. (For those of you trying to figure out ages, I was 8 and he was 11.)

I remember him being terribly sick for weeks. He was in DKA. No one in my family history has had type 1, so they weren't looking for it. They thought it was the flu. I remember watching him waste away on our living room sofa.

I remember, being 8 and having absolutely no clue what anything was, asking all the stupid questions and being a general annoying younger sibling, secretly worried about him. I remember when he was well enough to go back to school, and everyone knew. There were many people with similar families to mine--one child in my older brother's grade and one child in my grade, so news spread amongst siblings.

I remember this, because I remember having other 8 year old kids come up to be and tell me that it was my fault that my older brother was so sick, that God was punishing him because I was such a terrible 8 year old.

My older brother hates to disclose, because these are the types of responses he normally gets. It's your fault. God is punishing you. You must have done something terrible to deserve this. The fact of the matter is not a single entity on this planet is responsible for his diagnosis.

Flash forward a few years. I'm in seventh grade (13), my older brother is in tenth grade (16), and my younger brother is 2 (he's a caboose!). My parents knew that something was wrong when I drank a gallon of milk and a whole thing of apple juice in about an hour. Looking back, they should have enrolled me in gallon challenge competitions. I could have kicked butt.

At that time, I looked back at my older brother's diagnosis and the backlash that we both got. I was absolutely terrified of what my classmates would say. And, almost like I'm a psychic, I got the same responses as my older brother. It's your fault. God is punishing you. You must have done something terrible to deserve this.

I knew better. I'd been watching my brother and knew the basics. I knew it wasn't my fault. I mean, I was the weird kid in the grocery store begging my mom to buy broccoli and veggies instead of candy. But it still gets to you. It's hard not to start hating yourself when your so called friends don't stand by you and tell you you're a terrible person.

I met some awesome friends later, and they have been super supportive through the years, but my past experiences have always made me wait to disclose.

I remember in high school having teachers (and peers, but I honestly didn't expect much from high schoolers) say really stupid things to my face, because I was seen as "less than" because of my health issues. My AP Physics teacher, whom I adored, told me he wished that he could lower my grade in his class because I was missing so much school. I thought about it, and logically, if I was doing just as well or better than my peers even though I was missing "half the classes", doesn't that mean I'm doing super awesome? If I got an "A" by the curve standards even though I had been missing class for doctor appointments, don't I still deserve that A? Apparently he felt the need to tell me that I didn't and that my "stupid 504" was protecting me.

I remember in college sitting in classes. At the beginning of each semester, instead of looking over the syllabus and eagerly reading the text book, I was analyzing the teachers and my peers. Should I tell them? Do they deserve to know?

I ended up telling many professors in my department, mainly because I was dealing with them constantly, and it's kinda hard to hide checking and bolusing in the lounge.

One day in our lounge, there were a group of my peers talking, and I decided to join the conversation. Apparently, in hushed tones, "There's this diabetic chick in the ECE department." I guess I had escaped them knowing. I got really wide eyed and said, probably a bit too loudly, "THERE'S ANOTHER ONE? WHERE?!" and I started looking under tables.

I know. I'm hilarious.

There were a few of the annoying questions, which I tried my best to not be snarky. I guess since these people had been around me for a few years, they realized that I know what I'm doing, especially since I kicked a few of their butts in grades.

I remember going to parties where we'd eat pizza and play board games. Of course, because pizza, my nemesis, I would check and bolus and check again and bolus again. So, naturally everyone at these shindigs knew. Instead of asking me questions, directly, though, they'd ask my husband. He told me the questions they asked, and I'd answer them so he would have answers. At one point though, I told him to tell them to just ask me the questions, because this was a very roundabout way of asking me, since I was answering them anyway. It's awkward when people talk about you behind your back, but I'm thankful that I didn't get all the really stupid comments, which I guess there were a number, including things about cinnamon and tea.

All this boils down to these questions:

Will I tell my employer? Definitely not at first. Will I tell my coworkers? Definitely not at first. Will I tell my friends? Definitely not at first.

Even though a lot has changed in the nearly 15 years since my older brother's diagnosis, I still have those old memories of disclosure race through my mind, and I ask myself Is it worth it? Do you deserve to know?



This post is my March entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/march-dsma-blog-carnival-2/

20 March 2012

Deteriorating Health

So, I haven't been updating like I wanted to, and in part that's due to anxiety over my endo appointment last week and in part due to the results of the endo appointment from last week.

Let's back up a bit.

I recently moved after finishing my undergrad, and so I now I'm with my husband. He lived three hours away for a semester while I finished and he worked. I really only saw a doctor once or twice a year while in college. My endo from back home is in the process (or, so it seems) of transferring his practice to the hospital, and when I did visit when I went home, I, along with the other "seasoned veterans", got to go to the new assistant. I guess our job was to show this new assistant how the diabetes game is played.

So, I hadn't really had a seasoned doctor at a dr appointment in about five years. Oh, sure. I had the labs done, but nothing was really done about the results. I mean, what are they going to do? Yell at me across the country? They're busy; I'm busy. We'll maybe discuss the next time I see them...in a year.

Anywho, I scheduled doctors’ appointments (yes, plural. I am so proud of myself.) after I got back home from winter break. I was not in good shape. Senior design had stressed me. Living away from my husband stressed me. And all those medical things that I probably should have been more aggressive about treating stressed me. All my medical problems were kicking my butt.

As I said to my mom on the phone, "Well, senior design is bad for your health, and I have the lab work to prove it."

I was going in last week for a follow up endo appointment. I'd been there twice before. Once to establish myself as a patient (and get prescriptions...) and once to have a test done.

That first visit was the first time in (and I kid you not) 6 years that a doctor had listened to my entire list of symptoms with my heart problems. Turns out, when you have multiple symptoms that occur at the same time, they tend to be linked!

Anywho, at that first appointment I got to go back a week later and get injected with radioactive goo so they could watch my heart work. Oh my goodness, that was like the most boring hour ever, and I still don't have super powers.

Last week I got to go in for my blood test results (the usual HbA1c, thyroid, kidney, blood count, vitamin D, etc.) and the results from the radioactive goo test.

All my blood work came back...not good. At least my thyroid is working.

As far as the heart stuff, here's a picture of a heart:




Wikipedia is awesome for this stuff.

Here's a picture of what my heart thinks is totally cool:



I am a paint artist. But in all seriousness, that's not supposed to happen. That's apparently really bad for your heart. Your heart muscle isn't supposed to just harden and shrink your ventricles. You are apparently not supposed to be able to see the septum (the wall between the ventricles) on the scan. You are also, not supposed to have your heart be inefficient. That's also pretty bad. See, when the muscle wall hardens and the ventricles shrink, it's more difficult to pump blood around your body and for each beat, you get less blood going, because the chambers are smaller.

So, this is all super-duper bad. How do I know? Because I looked on webmd, and this is what it told me:

Can you see that properly? Sudden death is a symptom. It's not like "Oh, and you may eventually die, like all people". It's like "Oh, we have people as young as you on occasion drop dead from this, and this leads to a posthumous diagnosis! Aren't we clever?"

I'm not going to lie. I know webmd and mayoclinic often give you the worst case scenario ("Oh, I sneezed! Do I have a cold?" "No. You have brain cancer and five minutes to live!"), but seeing that scared the ever living stuffing out of me.

I've fainted at the top of a flight of stairs before (someone caught me before plummeting to my doom). I've nearly fainted while driving (I managed to pull over). During both of these I felt like someone was taking a butcher knife to my chest.

I've had nights where I can't sleep because that pain is so terrible, and nothing makes it go away.

I've had days where I can't do anything because even though I've just woken up, my pulse is around 200 and I feel like I just ran 5 marathons.

I've had one day where I learned not to take Dayquil, because it makes my pulse shoot up to about 300.

At least it's a diagnosis, right?