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
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
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
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.