Tuesday, January 24, 2012

Warning: totally premature

I was thinking recently -- when you're thinking about bringing someone into your life, how much information is too much? When do you bring up the "So, if I seem really out of it and tell you my sugar is low, this is what you do..."

I have always had this really stupid idea that maybe one day I'd meet my diabetic soulmate and we'd get married and totally understand and take care of each other and live happily ever after. I know that is highly unlikely, but I've adapted that fantasy to be that my future husband would understand as much as they could. But what if that person is terrified? Recently, I had an experience where I had to tell someone I was spending a lot of time with, "Look, if this happens, I need you to be able to help me." His response - "I will just call 911 - I'm not touching any needles!"

If one of someone's greatest fears is one of the main things in your life that keeps you alive, how do the two pieces fit together? Would I entertain a life of going at diabetes alone because my significant other got queasy at the sit of a syringe? Or would I send that person packing. Do I give them a chance to get used to it? The last question brings up another - what if they don't get used to it? Then I have invested all this time and emotional energy into creating a relationship doomed to fail.

I guess I am still relatively young, and a lot of people will say that I have plenty of time to settle down. But am I wrong for wanting a partner on this battlefield? Not just to brave this crazy diabetic roller coaster, but everything in life that goes along with it? I've gone almost 15 years caring for myself, I'm ready to share the load with someone else for the next 75.

I don't know much about my husband. I don't know his age, his birthday, or what he looks like. But this much I do know -- he is going to have to be tough as nails to deal with me, and my backseat passenger.

Monday, January 23, 2012

it's an off day

I find that when I have days off with nothing to do, I have the most trouble managing my diabetes. It's like.. okay, I'll sit here for 3 hours and watch Netflix. Then, I'll go eat something. Then, I'll play on my computer for an hour... and go eat something. This constant influx of eating out of boredom combined with my general lethargy makes for a yo-yo day in regards to blood sugar. For example, last night, I went to bed high -- 279. Woke up high -- 202. Took a bolus correction. Plummeted to 39!!! Drank a coke -- shot up to 209. Took another correction -- shot up to 233 instead. Waited like 4 hours and I finally dropped to 141.

I have a headache already. But the good news is my insurance magically paid for an extra prescription of insulin this month! So instead of 3 bottles of humalog, I scored 6. Granted, I have to pay the copay, but I like having a little back up plan since I routinely run out until the last drop of insulin is gone from the vial -- then I'm searching for old resevoirs with some left in it, because my prescription is expired and the Doctor's office is closed and can't call it in. So hopefully I won't have to do that any time soon.

I have been reading a lot of people's posts on CGMs and I think maybe soon I will try it again. During the filming of the show, I did a 7 day trial with the dexcom. But I am all about traveling light -- you're lucky if I even carry my meter with me, and trying to convince me to carry around that oddly shaped, vinyl zipper coated CGM would be near impossible. Plus... I already have issues with infusion sites on my body. I have very fair skin and already am scarred to the max from my pump sites. I know it sounds stupid and cosmetic, but I'm not sure if I want to add another device that's going to mark my body up further. I wish I knew a way to get rid of the scars. I've tried creams to dim them but they really don't work!

Oh well. This post is really just my ramblings today, since I'm trying to kill time while I wait the day to tick on by. If anyone has any really good websites about the Dexcom, let me know. I'd like to do some more research to figure out if it's really going to be for me.

Saturday, January 21, 2012

oh, mother..

So I have been reading some reviews on the show and I want to make a post for my mother.

No matter how much we fight, argue, and disagree, I love her and I know she loves me more than anyone could ever imagine.

What the show doesn't air is the 10 years she supported me, financially, after I was diagnosed with diabetes. When I first got my insulin pump, the cost of supplies were outrageous. I was a college student then, hardly working. So anyone who has anything to say about her "not helping me" is completely, 100% delusional. When I was 11 and admitted to the hospital, she spent the night in a chair beside me the entire three days I was there. I don't think she left the room once.

Even though living with Diabetes has been expensive, that is a responsibility that I had to learn as an adult. At any point, if I couldn't afford the new pump, or couldn't afford to pay for a supply refill, my mother would give me the money -- I only have to ask. But part of growing up, and being independent, was learning how to do that for myself ... even if it meant using credit cards and working two jobs. It was important to me to be able to support myself. If I couldn't do that for myself, how could I possibly ever hope to support a husband, or a child?

What they don't show is a HUGE part of the reason I was working two full time jobs was for the health care. I was kicked off my father's insurance at 23 and paid for COBRA benefits for awhile, while I looked for work post-graduation. That was a hefty bill, around $350 monthly just for minimal coverage. I finally found full time work and got benefits that I didn't have to pay as much for... but it wasn't enough. The co-pays were ridiculous, and the prescription coverage wasn't any better. So I started working a second part time job to cover expenses. The second, part time job, turned to full time. And I got better benefits there for office visits and durable medical equipment. Insurance at the first job changed and I got better prescription coverage. So I worked both jobs for a long time because it helped save some costs in paying for supplies, and I could pick and choose which coverage I used for which situation. Believe me, if I could quit my jobs and just stay at home, I would... and I bet my mom would support me financially. Well, probably not, since I'd be kind of a bum for just quitting my jobs for no reason other than to not work. But you get the point.

Something the show also did not display was how much I have cut my mother out of the conversation around diabetes in my life. When my health was spiraling out of control in high school, she was the one that paid the hospital bills. She was the one who watched her daughter on a hospital bed, teetering on the edge of very serious harm. And most of it was my fault. I either lied about my diabetes (I got REALLY good at faking test results in my meter if I hadn't tested for a few days), or I just shut her out completely. I went away to college for four years and that didn't help. Since I was so far away, I didn't really have to talk about it. When I came home from college, all those secretive habits came back with me. If she asked me how I was doing, I said, "Fine." If she probed more -- only because she cared about my health -- I got defensive.

So that is where a lot of the residual tension between my mother and I comes from. I had -- and still do, honestly -- a lot of reservation in sharing anything related to diabetes with anyone. Especially my mother. Sometimes I think it's because I don't want to worry her. Other times, I think I keep it to myself because I just don't want to deal with it. Most times, it's just because I am too ashamed to really admit that I still don't have the whole "living with diabetes" thing down.

Hopefully everyone can do me a favor and revisit the episode with an open mind... and remember, it's television.

Friday, January 20, 2012

True Life: I have no idea how I got here

I'm not a stranger to blogging, but previously I have always kept my entries private. It was sort of my way of letting go of emotional drama and build up but not having to burden anyone else with it. I have never categorized myself as a "sharer." It's been a major downfall of most of my relationships to date, actually. Always been more of a listener. But last year, an opportunity presented itself and I don't know what made me do it, but I took the chance.

I was sitting on my couch with my friend Sandra, watching Jersey Shore. We have always joked about how interesting we are (we're not), and how much people would love to follow us for a day (they wouldn't). It was one of those stupid best friend moments where you just talk to hear your own voice. But I went to MTV's website to look for "Real World" auditions, and came across a casting call for a True Life episode around People with Diabetes.

I felt like the universe was telling me something at that point. It sounds cliche and stupid but I had never, ever confronted my diabetes from a public standpoint. My friends only knew because they asked about my "pager" in my back pocket. It's never been something I shared openly with people... even my family! But I sent in the required photos, identifying facts, and my story. I got a call a few days later from a researcher, then another call from a producer, and then somehow, a few weeks later, there they were at my apartment with cameras. It happened really quickly, and I really didn't think I was ready for it.

When I told my parents about the show, they didn't understand. "Are they paying you?" No -- they didn't pay me. It was a voluntary documentary. But my hope was this -- that maybe by finally talking about living with diabetes -- or, rather, pleasantly ignoring my diabetes -- I'd be prompted to take better care of myself. That really wasn't how it worked out, at least not yet, but I'm finding that the response to the show is actually far more eye opening than the filming itself.

The filming was, politely put, inconvenient. People didn't really ask about what we were filming when we were in public. They avoided you like you were some leper carrying a contagion just on the cusp of eliminating all of humanity. But I found solace in venting to the producers, who were used to it. If you watched the episode, you saw me cry like 6 times -- but only the producers and I know (well... and now, you) that there is enough sobbing footage to make a feature film. I didn't like having to talk about living with diabetes, because I wasn't sure how comfortable I was with just living with myself, period.

But, like I said, the response to the show has actually been the best part of it all. I found out that there is an entire world of intelligent bloggers, tweeters, advocates, and supporters who are all on the inside. They understand. They know what it's like. And I might not be able to articulate what it's been like for me yet, but I think I'm learning. I don't hope to be an internet sensation, a famous blogger, or a reality TV star... I kind of just hope that I can connect with some people who might finally understand what I'm talking about or how I'm feeling. And then, maybe one day, be able to give the same feeling back to some other person who felt like I did before finding out about this world of support.

This blog could go on forever. Instead, I think I'll post the casting email I sent MTV. This is the first time I've re-read it since I sent it, and it is KINDA dramatic. Okay, I lied. It's REALLY dramatic. But every inch of it is true. My story that developed during filming had an organic start... I really didn't think they cared so much about the draining financial aspect as others, but it turns out that's actually a really big part of my story.

Diabetes is the only thing about me that makes me different from the average 25 year old... and I hate that. I have never wanted this disease to define me, to determine what I can and cannot do. I was going to live WITH diabetes, it wasn't going to run my life. But, 14 years after my original diagnosis, the tables have turned so dramatically that I can't believe it.

I was diagnosed with type I, insulin dependent diabetes on March 14, 1997, just three days after my 11th birthday. The story about how I found out is interesting -- at least that's what every doctor tells me. I didn't fall drastically ill and have to be admitted to the hospital. Instead, my 5th grade teach prompted us to do an extra credit report on a topic of our choice... and mine just happened to be Diabetes. As I sat in my room going through the encyclopedia, reading the list of symptoms, I panicked. Excessive thirst -- I often filled a Big Gulp cup to the very brim with water and would drink it in two gulps, just to refill it minutes later. Frequent urination -- while watching my favorite television shows, I often had to go to the bathroom at every commerical break. Weight loss -- I had dropped almost 20 pounds and could wrap my hand around my ankle. Increased appetite -- despite my weight loss, I was eating more than ever (something my parents wrote off as part of my growth spurt). All of them fit. I went to my Mom, and told her what I thought. She brushed me off and told me that I was overreacting. I went to my Dad next (my parents divorced when I was 4 years old) and he listened enough to talk to my Mom.

The next day, I cried in the doctor's office as I watched a ketone strip turn from white to bright purple. Hours later, I was admitted to the hospital.

Initially, Diabetes did not seem that bad. I was pretty disciplined at testing my blood sugars, counting my carbs, and staying on track. I was 11. I didn't have a rebellious bone in my body. I had a "honeymoon" period where my body required very little insulin to stay regulated, for an extended period of time. My doctor's said it was abnormal that it lasted that long, but weren't worried -- it wasn't a bad thing. So, two years went by and then I made it to middle school, where I was getting more freedom from my parents.

Things didn't really go downhill until high school. The first time I remember getting really sick, was when I had ketoacidosis in my Sophomore year of High School. I hadn't been taking my insulin regularly for months at this point, generally only injecting fast acting insulin one time a day in a large dose (usually 15-20 units), which was extremely dangerous and not helpful at all to my health. I went to softball tournament and was so dizzy and dehydrated that I couldn't play. My coaches fed me gatorade (loaded with sugar, which made the problem worse), and then I went home. My parents were out of town for the weekend, so I decided, like any teenager would, to invite my friends over to the house. My friends smoked pot in the backyard while I drank slurpees and watched movies on the floor. Several people spent the night and I woke up so sick that I could barely move. I was throwing up non-stop. My best friend Brianne helped kick everyone out of the house while I called my Aunt to take me to the hospital. When I arrived, I was admitted immediately. I don't remember much after that, except for the feeling of my mouth being as dry as sandpaper. The nurses were instructed to not feed me anything, even water, until my blood sugar was stable. But I was so desperate for water that I went into the bathroom and drank from the sink.

The doctor told me that day if I had waited one more day to come to the hospital, I'd be in a coma... or dead.

But that didn't scare me enough to make me take care of myself. This was 8 years ago, and now I have better control... but the things I want to do in life are so drastically out of line with the things I need to do to take care of my diabetes. I'm 25 and I missed out on a lot of partying. My friends don't carry a blood sugar meter around every where they go... so I stopped doing it, too. I've even been asked if it's contagious. When I get into a serious relationship (and that happens so rarely), I have to have the conversation about it. People joke about my "gameboy" or my "pager," when they see my insulin pump. And yeah, it's all fun and games... but this is what I live with every day. I go to doctor's appointments every three months ... if my insurance pays for it. Then my insurance decides to change its coverage, and I have to pick a new doctor. Or I switch jobs and find a new doctor. In the past 6 years, I have never seen an endocrinologist regularly. The most I've seen a doctor since I was being cared for by a pediatrician was in a period of 2 months. My friends and peers are lucky that they rarely have to see a doctor, if ever.

After my first bout with ketoacidosis (there was a second one my Junior year in high school, when I was on a Cheerleading trip to Florida), I realized that I could manipulate my insulin to lose weight. High blood sugars caused more ketones in my urine, which essentially meant I was passing all my calories out through my urine, rather than retaining them for nutrients. I lost enough weight to really notice what I was doing. But that had to stop after I almost died the second time... and subsequently, I had a massive period of weight gain.

So now I'm here, 25 years old, working 80 hours a week, struggling to manage a disease that will never leave my life. I am getting to the point where I'm worried about when I am going to get married, when I'm going to have kids... but diabetes puts everything on hold because at this point, I can't even sure I'll be healthy enough in one year to get married. My body may be so damaged from everything I've done to it that I could never have kids. I'm desperate for an intervention. I need a complete restructure to get back on track. I've had the same insulin pump for 6 years, and my health insurance just told me if I wanted to get a new one, it would cost me $1,000.00 dollars. What other person do you know that has to pay to survive? It makes me sick and sad to think that if I want to continue to live, I have to PAY for it. My basic human right of freedom has been taken away by a disease that I never chose to have. I didn't give myself this disease. Yet I pay for it every day.

There's much more to my story than can be explained in an email. But I think that this opportunity is very important for me to show other peers what NOT do to, and what your life can become like if you let it go. When I clicked on the MTV casting link, before I even saw what True Life was looking for, I had said in my mind, I wonder if they'll ever do an episode on Diabetes. And the page refreshed and had it right in front of my eyes.... it has to be destined to be!