a rant

i've been avoiding my illness. 

fast forward to present day... i'm 29 with two young kids, one with a frightening condition called sacral agenesis. i'm taking college courses trying to pursue a degree in journalism (because we all know there's a high demand for writers out there. sigh.) i'm trying to keep everything together as much as i can and support my husband who is working as a home health care provider on the weekends while taking a full course load at a university during the week as our house goes into foreclosure because the banks refuse to approve our short sale and the creditors are calling at all hours every day and night. i'm getting up at 7 every morning and working out and making my daughter's lunch and tidying up the messes left from the creatures that reside here and telling myself to keep calm, things have a way of working out. but i've been avoiding my illness. 

my health insurance is not accepted by my primary care physician any more so i'm trying to find a new one and i'm praying that he won't send me to an endocrinologist who i'll just end up being written off by for "not working hard enough"on keeping track of my bloodsugars and my carbohydrates and my insulin and so forth because it's SO EASY to put everything else aside. i've been dropped by three diabetic doctors now because the non-diabetes related part of my life got in the way and the records i gave them weren't up to par. "we can no longer continue to see you as a patient." not, "we care about you and we understand it's hard to keep up with all of this. keep trying." not "even though we are slightly disappointed in your record keeping, we don't want you to feel alone or to end up with horrible health problems or die young." just, "we can no longer continue to see you as a patient." like i am a child being scolded for not taking the subject more seriously. i realize the severity- believe me, i do. i kind of have to because it's staring me right in the face. but i have a sour taste towards professionals that give up on a patient so easily. i have a dread in the pit of my stomach like i'm being sent to the principals office every time they set me up with another endocrinologist. i'm tired of being turned away for slipping up. it's not like i don't try. how many other americans have to deal with this kind of situation? your doctor tells you you're at an unhealthy weight and you need to lose a few pounds to stay healthy. at the next checkup, after stepping on the scale you discover you weigh the same amount as before. "well, i'm sorry, but we can no longer continue to see you as a patient." rejected. by the professional medical physician being paid to help keep you in good health. because you have other things in your life besides this disease. because you are drowning under depression and worry and stress and frustration and you don't always have the time to look up the recipe for the chicken noodle casserole you ate a bite of at a family gathering so you can tell them the exact amount of carbs and fiber it contained. 

this disease sucks. diabetes sucks. and having to deal with all the suckiness of it on top of people who have no faith in you and are allergic to second chances makes it all the more sucky. 

you have dia-bee-tees

a fellow diabetic once asked me if i could remember life before i was diagnosed and how it felt. i do remember small things - asking for pieces of candy without having to worry about how it would effect my blood sugar, things like that. mostly though, i remember not being afraid of food. after i came home from the hospital a little voice in the back of my mind started speaking up, sure to alert me every time i took a bite that i was going to have to take another injection. i worried about the impact that the carbohydrates, proteins, and mostly sugar would have on my little broken body and if they would end up hurting me like they hurt my dad.
school became pretty tough. it was apparent that i was different than the other kids and some of them had no problem letting me know they were well aware of this. i was told because of my disease i was not going to live as long as everyone else and that my dad would probably end up dying at 40. i was teased mercilessly some days and came home broken hearted. my parents were still trying to adjust to life with or as an amputee on top of caring for me and my newly defective pancreas, and though they both tried cheering me up and giving me ways to deal with the situation i couldn't help but feel lost and alone.
there was one boy in particular that tried very hard to make life difficult for me, although more often than not i would end up laughing at his attempted taunts. he clearly had no idea was diabetes was, so his tactic was simply to give me the facts. "you have dia-bee-tees," he would sing song to me when he passed me in the hallway at school or on the playground at recess. at first his tone stung a little but his words weren't exactly hurtful. i did have diabetes. "you can't eat su-gar" he informed me. not exactly true, but this was the overall impression that most people had of diabetics so i really wasn't phased. i kept waiting for the sucker punch- the day when he would pull out his secret weapon and i would be left with a bruised ego and a broken heart. but it never came. i actually began to smile when i saw him coming my way, which infuriated him, but since he had nothing more to go on than 'that girl has diabetes' he would make mean, nasty faces while teasing. this added a lot to his comedic performance when combined with the sing song tone and the insults-that-weren't-really-insults. i remember one time trying to hold in a giggle and failing as he passed me doing his routine. he wasn't pleased. apparently his job was to make people laugh at me, not for me to laugh at him.

Diagnosis Diabetes

i have to admit, starting this blog made me nervous. it felt good to get that first part out- the repressed memories of childhood trauma that floated into my consciousness every once in a while. but the next part of this story is a whole other can of worms. the next part of this story has to deal with me. with my own experience with this disease. and the more i think about it- what it did to my childhood, my family, my psyche and my body, the angrier i become. no, diabetes is not cancer. it is not something that makes people envision the pain and unfairness of chemo or mastectomies or any other number of terrifying medical procedures and treatments that come with that dreaded disease. diabetes typically brings to mind elderly or obese people with a "sugar allergy". not a six year old rail thin girl whose future is now filled with needles and blood work and doctors and ostracism. not that. diabeetus is the joke disease- the one that fat comedians warn you about by telling you "if you eat too many twinkies you gonna lose that foot." cause it's okay to make fun of a disease that's associated with being overweight, right? all the stereotypes and second hand information that you've heard from people with a friend/uncle/grandparent that have struggled with diabetes must be true. . .
right?

i stayed in the hospital for a week after being diagnosed. i shared a large room with curtain partitions with about ten other kids ranging in age. i shared a television with a teenage girl that loved jason movies. i went to "school" in a room at the end of a long hallway on my floor. i made friends with kids that were suffering with all sorts of conditions- leukemia, muscular dystrophy, cystic fibrosis. a nurse came into the room to poke my finger and give me a shot three times a day. it hurt. my body wasn't accustomed to the barrage of needles and the bruises added up and had me resembling a welch's grape within just a few days. it was lonely, even with all of my roommates, and it was difficult to sleep with everyone's iv's and other medical devices beeping and blipping. i got homesick, and i got upset when, seeing the girl across from me getting a special treat, being able to watch a disney movie, and asking for one of my own they brought me an informational video on my newly diagnosed illness. i got a card from my first grade classmates hoping that i get better soon, which put a smile on my face for a little while when i thought about coming back to school and telling them all kinds of stories about the hospital and basking in the glow of my curiosity inspired popularity.
mostly though, i still felt sick and my head felt foggy. this had all happened so fast and i wasn't sure what came next. it scared me that i could be fine and healthy one day and sick and diseased the next. i was miserable about the thought of no more sweets and being treated like a pincushion for the rest of my life. and if my dad was any example of what was to come down the road, i wasn't sure i wanted to grow up at all.

Starting Off

Okay, I know I really don't have that many followers and this blog isn't really anything but a stress reliever- it might as well be a random notepad laying around my house so I probably don't even have to address this, BUT--- if there is anyone out in the big, wide interwebs who actually did like to browse my thoughts from time to time- this little disclaimer is for you. :)
You may have noticed that I changed the title of my blog (and I'm sure if I do have any followers they're shaking their heads wondering what in the hell took me so long). When I first started this public diary experiment called blogging I treated it as one of my real life journals. I'd pop in when I felt "enlightened" and spout off some cryptic lesson that I felt life had taught me. I decided that wasn't the most valuable use of a webpage and it dawned on me that if I'm going to treat it as a journal, instead of being vague and unrelatable, I should actually journal. And in doing so, since this is a somewhat therapeutic process, I could somehow face my demons. In particular, a disease that I have lived with for over two decades.

I have type one diabetes.
I realize that this is not really an earth-shattering proclamation. I don't have cancer, or HIV. I didn't just come out of the closet or announce that I'm running for president. I have a treatable disease that millions and millions of people deal with every day. No, Wilfred Brimley is not my hero, and neither is Mary Tyler Moore. I didn't get this disease from eating too many Hostess cupcakes and I'm not at risk of losing my foot... not yet anyway.
I actually had a relatively normal childhood until I was about six years old. My father was a diabetic and took insulin shots every day but I barely noticed. I was too busy terrorizing our cats or playing with my next door neighbors or planning out my future as the next Mariah Carey to realize what was going on in anybody else's world.
Then one night while my mom was at work and my dad and I were at home (the more detail I try to remember about the before and after of the events that night, the fuzzier they become) he dropped to the floor without warning, clutching his right knee to his chest. His face was twisted in agony and discomfort and he rolled from side to side with tears in his eyes when suddenly it went white and his eyes widened in a panicked realization.
"They're gonna cut it off."
He whispered it into the air and, sitting on the floor, drenched in an anxious fear, next to my daddy, who had been smacked down by some invisible hammer, I tried to comprehend his words. They're going to cut what off? My brain raced with questions and theories as my father pulled himself up and dialed 911.
My memory is choppy, but vivid. The next thing I recall is my big, powerful daddy being strapped down on a stretcher by strange men in white while I stood on the landing of our stairs, looking down at him and being held by my grandmother's shaking hands as he cried over and over again, "I'm sorry, Rach, I'm so sorry."
They removed his leg from the knee down soon after and my father was left with a stump of a limb that I would sometimes pretend was a horse and imagined he was part mythical creature because in my five year old brain, what had happened to my dad was out of my realm of understanding. We were not at war. Regular, every day people with kids and a wife and a house and a dog and a job they came home from every day didn't suddenly start misplacing lower portions of their bodies. My friends dads had legs- both of them. I watched them walk away from the school holding their daughters hands as they picked them up after the last bell. I wondered why they got to keep theirs.
Then one day, I got thirsty. It was an incredible thirst that no amount of liquid could quench and it ran through me like a funnel. I started feeling sick to my stomach and enormously tired. I remember looking in the mirror at my face and seeing dark circles under my eyes that wouldn't wash off. I lost weight. My Mom would look at me with a worried expression and comment on how thin I had become.
After a few days, my dad told me he wanted to check my blood sugar. I'd seen him do this everyday for as long as I could remember. He'd take out the little electronic box with a screen on the front and press a pen to his finger, then- click! It would poke a hole and he would press the blood onto a little tab sticking out of the box. A few seconds later a number would appear on the screen and he would go about getting his insulin ready. I'd seen his friends try it before too- curious about what their magic number would be. I was intrigued and agreed to let him test me. I wasn't worried about the poke- I never really even gave it a thought until that little pen stabbed my finger and the pain was bearable and over quickly. His face showed nervousness as we waited for the number to appear and when it did his expression fell. He turned to me.
"Rachel," he said, "We need to go to the hospital."