A Modern Life with Type I Diabetes

You're the best...AROUND!

2010-02-24T15:23:00.000-05:00

One thing that I have realized over the years of my emotional ups and downs is that I am forever trying to reinvent myself to be better than the last moment. There are always new clothes, new travel excursions, new friends, new lifestyle habits. However, something that I have been struggling with most recently is that I'm not so sure how to be better without being disappointed about not being the best.

Something that I always found interesting in some unnamed former President's arguments about public school education is that in America, we should "teach values". I am confused by this. I am confused as to whom do these values belong? Who is it that decides what values we adopt? Who are the role models who give examples of these so called values? Sure, there are certain things such as you know, don't steal from people and don't kill your neighbor and stuff, but the term "values" is really hard to define. I look at perfectionism in the same way but it is something that constantly haunts me.

What is the best? What is perfect? How am I supposed to compete with something that I cannot even define? The quest for the best is often ruled by certain actions or thoughts that are just completely made up by me! I make these rituals and scenarios and desires, I also happen to punish myself when I don't meet them. For example, I am devastated by my weight. I have been so frustrated by my inability to lose weight in a healthy way and I let it completely consume all of my ideas about beauty and perfectionism (in myself).

I wonder though, if I am ever going to feel good enough. I used to feel beautiful at one time or another, but my idea of being beautiful has been so warped and manipulated to the point where I cannot even look at myself without criticism and blame. I continue to ask myself how do I get out of this pattern? Who's idea of the perfect me am I fighting with? It's just me and my ideas and my critiques, and obviously an influence from other sources in the world, but it's me who is holding myself up to these standards.

Okay, so, let's break the cycle shall we? I am going to attempt to define what are my "good enoughs" right now. For today, and maybe for tomorrow, these are what make me good enough:

1. I have a job that pays me and praises me for competency in my skills

2. I have a Masters degree from a highly competative institution

3. I have a supportive family every single day that loves me unconditionally

4. My friends call me and want to hang out and look to me for advice, and I need them as well

5. I spend my days looking for ways to relax but also have fun, and I have a good idea of what I like to do but also what I would like to try

6. I live in an amazing city in an amazing apartment that I pay for with hard-earned money

7. I have a supportive parnter who believes that I am beautiful

8. I have control of my diabetes often enough that I rarely go high or low and I'm learning more about how my body is controlled by this disease

9. I care about others and treat people with respect

10. I am constantly trying to learn more about myself with the intention of maintaining happiness

Happiness is such an important driver for all of the things that make me who I am and good enough for me. There are many things that I want to do and experience, but I have to stop thinking of those things as making me the "best" I could possibly be, but rather helping me become good enough for me. This is not lowering standards either, but this is me attempting to recognize the happiness and good things that I have helped make for myself and that others have helped me make too. I can contribute to helping myself, but I also need to keep in mind that the best and being perfect are undefineable and unattainable. That has to be good enough for me.

'Cause You're A Bugaboo, a Bugaboo

2010-02-03T16:40:00.000-05:00

I know it's been a while since I have added anything to my blog, but it's been a busy beginning to 2010! One of my New Years resolutions was to be more proactive in the management of my diabetes, but to not let my life be taken over and consumed by it. It has been a difficult balance these past 12 years to figure out what is my life and what is my diabetes, and I think that I've come to the conclusion that one is not without the other, and that's well, okay.

There is not a moment of any day that I do not think about diabetes in some way. I'm pretty tired of thinking about or saying the word that sometimes I want to change the name to something else entirely, like a code word. Hey if Lady Gaga was born "Stephanie" I can do this right? Instead of diabetes or liveabetes, maybe I should just call it "bugaboo" or whatever comes to mind at the moment. Regardless, diabetes is a bugaboo and it shows in every move, every thought, every action of every conscious moment of every day.

I cannot think of anything else that I have to put this much time and energy into. I think about things that I do every day including brushing my teeth, eating, sleeping, and other habitual needs of mine. If I forget to do one of them, I'm totally off and most likely cranky but it's certainly not the end of the world. If I did one of those things all the time without a break, I would be one white-toothed, fat, or untired person. There has to be a balance with the things that we are sustained by however, we do all of these things to keep doing what we do every day to keep us alive. So in fact, the only thing that I do other than diabetes for every moment of every day in my life is actually just living. So, in conclusion, diabetes and my life are in fact, synonymous.

January 5, 2010 marked my 12 year "Liveaversary" and many friends came over to celebrate (yes, celebrate) the dedication to this partner in life of mine. It's really too bad that I didn't get some shiny diamond ring out of this relationship, but if the chance were to come, I would divorce it in a jiffy so I can understand the hesitation on the 'betes part... but still it looks like I'm in this one for the long haul so I should get some kind of pretty thing out of it!

Being that it is now February, I have tried to hold on to my resolutions from the new year by enrolling myself in an intensive outpatient program at the Joslin Diabetes Center. I was nervous to go because it would mean that everyone would be looking at every microscopic piece of me, and I was afraid. To be quite frank, I have been scared about the damage that has been done to my body and if a lot of it might be irreversable. Good news is that I'm healthy and that most of it can be reversed if it already hasn't started healing. This has given me a lot of hope and motivation to keep going on the recovery path and that slowly but surely, I'm making a better life for myself.

Something that I have found quite interesting in my diabetes-inspired reflections is that I am much happier when my blood sugars are in control, but when they're in control it is because I am dedicated to being happy and do what I can to control them. Sounds pretty cyclical right? Well, that's the whooooooole idea. When I am happy, my diabetes is happy, and when my diabetes is happy, I feel like I'm a new person and that I am stronger. So, now that I've figured that one out, I'm hoping to find the things that continue to keep both the bugaboo and myself at peace. These are some of the things that have worked so far:

1. Taking a compliment

2. Listen to other people better

3. Talk about love

4. Exercise

5. Budget my money and my time

6. Walk to and from work (as long as it's not freaking freezing) and not listen to music, but look at the people and the buildings and the area and take it in

7. Walk to and from work with music and kind of shake my booty because you know that Pink, Beyonce and Alicia Keys are comin' on

8. SLOW DOWN.

9. Check my blood sugars and take the time to do the math

10. Buy new bed sheets, keep up with laundry, and my mail

11. Re-connect with friends

12. Make new connections

13. Dress up sometimes for no real reason

14. Dress down because it's really is cold out there and I just want my cozy sweater

15. Recognize when things give my heart wings and try to do it again

So those are just some of the things that I'm trying to do more often that help keep my life in balance and in check. I don't konw if I've ever really mastered this art, but I can certainly try. Another really big aspect to happiness is to recognize unhappiness. There are things that make my life not really what I want it to be and even though diabetes is one of them, I can control most of the rest of them and I'll try and control the bugaboo as much as I can. I guess the moal of this story is that my life is a sea of checks and balances, and if diabetes liked it, it should have put a ring on it. Man, Beyonce rocks.

Yes Doctor, I'm sure

2009-12-09T17:18:00.000-05:00

I am very inspired by music. Sometimes I think that the only way I can describe what I'm feeling is through music or lyrics. Something that struck me today was a quote from Alicia Keys: "This beautiful city seems empty. All the people in the world and you can still feel lonely. What's the point of having it all without the person you love. Sometimes you just need to start again in order to fly."

Why yes, Alicia, I totally agree.

I think that with most mental and physical illness, or any kind of "abnormality" the feeling of being the only one in the world who is experiencing "this" is overwhelming. I'm pretty sure that it's not entirely true for the most part, but I can see why it feels that way. When I was at my lowest and worst I felt like I was completely alone, but it was a constant battle. To tell or not to tell, that is the constant question. When I finally chose to start over, the first step was letting people know what the heck was going on, and the world no longer seemed so empty to me.

One issue with Type 1 diabetes and eating disorders is that there is not much research out there about it. There is nothing really empirically based, there is no right or wrong way to treat it, so it feels desperately isolating. I didn't expect anyone else to know what was happening because I didn't really know the medical implications of it, all I knew was that I felt awful. It wasn't until I peeked at my medical files one time at the doctors and I saw the diagnosis, "Eating Disorder, NOS". Crap, really? Is that what this is? Let me pull out my handy Diagnostic Manual here and look up the symptoms... Wait, haven't I been trained in this?! I reminded myself that I had been hospitalized twice now and no one ever asked me direct questions about my eating disorder so if medical doctors couldn't get it I couldn't be too hard on myself. In the ICU in St. Louis, one doctor came in with about 4,000 medical students and said to me, "How long have your blood sugars been high" and I despondently responded, "Not long". He came back at me quick with, "Ya sure about that one?" and left the room. I don't know about anyone else, but I don't respond too well with that kind of attitude and I have no problem shutting down after that.

I don't have the best advice for everyone, but I do know what has helped me. My world was extremely empty because I made it so. I chose to push my illness under the rug and to tune out any voice of reason. I did not ask for help, I didn't acknowledge when people were worried. I lied, and I stayed in the dark (literally). So at the risk of sounding very after-school special, it may seem like all the love is gone and you're totally alone, but it's not true. Oh, and you can always start over. I reinvent myself all the time. There are certain things that I want to say, "I love to do..." instead of, "I would love to do..."

Starting over is not always easy though because people remember certain things about you at the time. I think this is one of the things that makes recovery so difficult. I made certain friends and took pictures and had size 0 pants during the ED. I struggle with all of those things because sometimes you want to just get rid of everything, erase your past and start totally fresh. However, starting over does not mean negating everything that has happened before this point. I think that starting over means using your past to help you understand where you are now. It's the age-old trick that your experiences are what shape you and what doesn't kill you makes you stronger. I look back on my horrible middle school years, (I'm pretty sure that Mean Girls was based on my town) and I think, wow if I knew then what I know now... The thing is though, you couldn't PAY me to do it again. So you learn, you move on, you try again.

I was talking to my sister the other day about how I was nervous about an upcoming event because I was going to see people who I haven't seen in a long time. Panicking, I said to her, "When I knew them I looked like a different person" and she intelligently responded, "You are a different person, a better person". Huh, yeah I suppose she's right. Like middle school, I would never go back to being that empty person and what I know now is because of what I didn't know then. In order to learn to fly I had to see the lonely world but realize that there was love there to help me start over. Sorry for the extreme cheese, but I had to give a shout out to my girl Alicia who always seems to know the right things to say...

Hibernation

2009-11-30T15:17:00.000-05:00

Since I have been in recovery from Diabulimia, I have obviously experienced some weight gain. I cannot express enough how painful this has been for me. In the beginning of the weight gain it was literally painful. When my body was "running" on the fuel of high sugars and molasses-like blood in my veins, it was depleted of all nutrients, fat, muscle, and water. The body begins to break down muscle and fat for energy. When an individual, who has been suffering from other types of eating disorders, begins to eat properly again, she will most likely experience water retention. This is one of the most uncomfortable experiences physically and emotionally.

When the body is starved and deprived of everything that it requires to function, and is suddenly given a little bit back, it becomes very selfish. Like the old lady next door who keeps every newspaper and greeting card ever given to her, your body starts to hoard whatever is brought into it to protect it just in case it was challenged to live on starvation mode again. I kind of like to look at it like my body went into survival mode, and it stored absolutely everything. I'm sure you can imagine what this does to someone who has the biggest fear of "fat" and weight, and has lived for years focused on losing weight, no matter what it took. I have had to let myself fill up like a balloon, and I had to do it "willingly". I had to store fat like I was a bear and go into hibernation for what seemed like the rest of my life. The edema finally did go down, and I am not swollen like I was, but during that time, I wanted to go into hiding until it was over and I was out of that body that I did not recognize.

The positive spin on the water retention is that because it is so painful, I never want to do it again. This is one of the biggest reasons why I remain in recovery and continue to keep my blood sugars in check and take my insulin regularly. When I first started to retain water and take my insulin, I was so immensely resentful for many reasons. It made everything I owned painfully tight (including shoes, stretchy pants, and don't forget about jeans). I required so much insulin all the time, which is a fat-storing hormone, and I was so used to eating food like I was a 300 pound man. Now I had to be on a meal plan, take tons of this "fat juice" and retain water like I was being paid to.

I don't know what it is like to be in withdrawal from a "typical" chemical dependency as far as I know. I do think that the symptoms that I experienced were most certainly the reactions of detoxing. When blood sugars are so high for an extended period of time, your blood becomes toxic and poisonous, and you're officially in DKA. This, like a drug or alcohol, can kill you if there is too much. So, too much of anything is (usually) not a good thing, and in my case this had to stop before I killed myself. As if that wasn't motivation enough to keep me from relapsing, going through the withdrawal symptoms again is probably one of the most influential reasons for staying healthy.

I can't decide if this is motivational or scary, and maybe it is a little bit of both. Even today, I struggle with my weight and my diabetes acceptance and care on a daily basis. I have more appreciation and care for my life than I used to, and that is definitely because of the support that I have from friends and family and the boyfriend, but it also has something to do with me too. I was completely closed off to help or acknowledgment that something was wrong, I just lived in my day to day coma and no matter how small I became or how sick I felt, I just kept going. I have had to try and reverse those thoughts now, and try to just keep going, but in the positive direction.

I hate when people (other than myself) are right. Usually my mother does this often and so does the boyfriend... flippin voices of reason... argh... I mean, clearly I know everything that is right for me all the time and in any situation. In fact, I'm always right for that matter. However, letting other people help me and love me is not me being wrong. I have to remind myself of this allllll the time. It is easy to jump in and save the day when someone else that you love is in trouble. I hate watching my loved ones hurt and I would do anything to stop it from happening. I try to remind myself that there are people who love me that way too, and I have to let myself be loved. It's not giving up on my pride, it's not failing, it's not losing my independence.

All of this recovery stuff is hard. Diabetes is hard, and so is living a balanced life. I'm working on reaching my long-term goals of health and happiness right now. These goals were long-term just a short year ago, and now I guess they're more like short-term. I had to detox and clean my system of the damage done to it, and there are still days when I feel like I'm dragging and not "normal", but the first goal that I made was to start to regulate my system. I have done that now, and work on it daily, but these new goals I have are way more fun to accomplish.

Are you sure you can eat that? WARNING: This may sound bitchy...

2009-11-23T13:07:00.000-05:00

Ask anyone with diabetes what really grinds their gears about common misconceptions about the disease, very often asking them "Should you really be eating that?" is at the top of the list, or at least it is for me. It is hard to know what would really hurt someone's feelings when you talk to them about their diabetes, but a word of advice would be, think. I am happy, no, more than happy to answer questions about Type 1 diabetes and to explain what medically happens to my body, but I am not like your grandmother who died from complications with high blood sugar, I still have all of my appendages, I'm not like Stacey from The Babysitter's Club, I am me.

Every diabetic is different and has a different style in their care. Instead of saying, "I heard that diabetics aren't supposed to drink booze or they'll die" try something like, "What does alcohol do to your blood sugar?" I don't want to hear some horror story about someone you once knew, and I don't want to hear about an amputated leg, and I don't want to be asked if I have the "Bad Kind" of diabetes. Note: No "kind" is the "good kind". Diabetes sucks, always.

Despite the many things that I don't like to be asked or bombarded with about the liveabetes, there are certain times when it is nice that people just understand. Unfortunately, despite all of my strong-willed and thick-headed ways, I have to rely on other people sometimes. One of the scariest moments in my life, (that I wasn't even conscious for) was my last night in St. Louis before returning to the east coast for the summer. It was the first and only time (knock on wood) that I passed out in my sleep from low sugar levels, but it was also one of the only times I could not help myself and relied on my best friend to bring me out of my coma. This is not a scare tactic, and it doesn't happen every day, but I was so lucky to have her there for me that morning, spoon feeding me honey until the paramedics got there. Being my best friend since before I was diagnosed with diabetes, Amy had grown up with me counting my food and testing my blood, and knew what to do in an emergency. This was the best support anyone could have given me because she knew that there was always that possibility that I wouldn't be able to help myself, but she also didn't let it rule her life or mine.

It is okay to ask me questions about my personal care of diabetes. I may or may not want to talk about it, but knowing that there are people who would like to understand more is always a comforting thought. Making assumptions and comparisons about diabetes is never a good thing, just like it's not for anything else! We're taught not to stare when we see something that we don't understand, so please, if you see someone testing their blood sugar, taking an insulin shot, or has a beeper-looking-thingy on the side of their pants, don't stare or get grossed out. As far as I'm concerned, shots, needles, blood and counting, etc are the sugar-free lemonade that I'm making out of the lemons I was handed. It's hard enough to deal with it as it is, so no offense, but I can't be concerned with how my diabetes is making you feel. It's not comfortable for me either so if you have a cure for it, I'm all ears!

A great article in the New York Times was just brought to my attention by my new friend, Katie. This article was a breath of fresh air for me because it is a real account about living with T1 diabetes, which is always something that I'm trying to figure out myself! It also helps explain the difference between Type 1 and 2, which is another subject that is important for me to help others understand. I know I don't have the most svelte body on the planet here, but there is nothing about my lifestyle that has caused me to have diabetes, so again, I'm just living it now the best way I can handle at the moment.

This post might be a bit more harsh and unapproachable than I hoped it to be, but I am trying to be honest and raw in my opinions and experiences. I have ups and downs in my tolerance for the disease and explaining it, but as a general note, I try to be patient and understanding when someone may only have one obscure reference to diabetes that they base all other assumptions on. This is kind of the same thing I think, and the best way to know more about something is to ask questions. Just please, stop staring at the piece of cake that I was enjoying, because in reality, nobody should be eating that...but we do cause it's yummy...

The show must go on...

2009-11-20T12:25:00.000-05:00

Ever since I was a little girl I have loved to perform. My sister and I debuted one of our most famous performances, "Kirsten and Alison Doing a Play" at the young age of 7. Since then I have moved on to more "well known" roles and performed in various plays and concerts, etc all through college. I think I've always felt somewhat comfortable on stage after my nerves subside, which is probably one of the reasons why no one really knew that I was so sick. I guess you could say that it was one of my most realistic performances of my life, you know, the "I'm totally fine and I'm perfect and completely functional" character that I hid behind for way too long.

It is my understanding that the mind and the body go into survival mode when life is compromised and you function on pure adrenaline to just stay alive. I look back on this time in my life and I am blown away at my ability to seemingly function normally, receive a master's degree, and get a job that could cover the expenses of living in Boston. I honestly have no idea how I got here. Basically, I was in a walking coma, and I was totally encompassed by the thoughts of needing to prove that I could do it all. I spent my every day physically in pain but ignoring all of it to just push through the task at hand. I can hardly remember a lot of what I studied, what I spent weeks researching, or what I said or did to prove that I was a master at my craft.

I do remember the nights when I was sleeping on the floor of my bathroom for fear of vomiting from the glucose levels. I remember falling asleep on my couch at lunchtime on one day, and not waking up until the next day and still not being able to get up and face the day. I remember the clumps of hair that fell out after taking a shower, and the stomach acid burning my esophagus, the popsicles that I tried to eat because they would quench my thirst for the moment. I can remember thinking that I was a big show, and that I could smile when I was just so damn tired because that was the scene that had to take place so that no one would know.

One positive thing that came out of my experience was the love and support that I found. When your body goes into survival mode, senses are heightened, and I found the most incredible friendships of a lifetime. I was so needy, and without questioning or thinking about it, my friends just reacted to me and loved me regardless. It was difficult for me to tell them what I was doing because I was so ashamed of it and I didn't want them to leave me. I know that they wouldn't do that because these friends were the kind of support that one can only dream of, but I still wanted to be in this world on my own.

The thing about eating disorders is that it is difficult to detect until it has physically manifested itself in weight gain or loss. Most likely, the severe weight loss is the point when it has gotten so bad that it feels like there is no turnaround for the person who is living it. There was a point in time when I really thought this was just the way I was going to live my life forever. I would eventually deteriorate from this disease, and I would let it take over. When I was at my smallest, it was extremely obvious to everyone that I had gone too far. I fought to stay in my own head and by myself and "manage" this the way that I knew how, but the reality of it is that I was so far gone. I was so deep in this character that I had created that I completely lost myself in all of it.

I don't really have any brilliant ideas on how to intervene when you see someone suffering from this. The reaction and feelings are going to be different for everyone, but I know that for me, it took the absolute, undying support of my family and friends to pull me out. If they were tired of dealing with me or helping me or listening to me, I didn't know it, and I felt like I was supported the whole way through.

When a diabetic who has been omitting insulin levels begins to take it more regularly, her homeostasis is completely off. When I started to take my insulin again and my blood sugar levels started to come back to normal, I retained fluid like a sponge because my body realized that I wasn't in starvation mode anymore, and now my organs and muscles were holding on to anything they could for fear of being starved again. This is one of the worst experiences of my life, and I never ever want to go through it again. It does go away, but for what seemed like an eternity, I felt like a balloon. Everything was swollen and tight, including my fingers, feet, eye sockets, everything. I was devastated because I had nothing to wear that didn't feel like it was squeezing and restricting me. My mother took me to the mall and helped pick out some dresses that flowed and didn't pull, and didn't show my swollen stomach and didn't accentuate my expanding waistline. I came out of the dressing room and my Mom looked at me and said that I looked "pretty". These were the types of things that kept me going and put me on the track that I am now.

There is no way I could have done it on my own. I had to accept the help from others and realize that it was hard. It hurt, it made me cry, and it was embarrassing. I was basically detoxing because the sugar in my bloodstream had in fact become toxic and was killing me slowly. It was important for me to be cared for during this transition and I can thank everyone in my life for that. I don't have the magic solution, and it's not very pretty and tied with a bow, but I had to go through this pain to realize that it is so much brighter on the other side.

Life is way more enjoyable now, and I can honestly say that I'm happy. There is no need to put on a show and take it all on by yourself. A wise man named Bono once said, "sometimes you can't make it on your own" and this is one of those times. If you let help come into your life, you can equip yourself with resilience to the things that may seem impossible when you're otherwise broken down and fractured. It takes a community to raise a child, no (wo)man can live alone on an island, blah blah blah, you get the idea :). If help is offered, just take it, you can repay it in another way some other day.

I know it feeeeels like somebody's waaaatchinnnn mmeeee

2009-11-19T11:31:00.000-05:00

I'm going to go ahead and admit something right now. I think that everyone has an opinion about me. Strangers, friends, my family, my boyfriend, people who don't know me but have sat next to me on the T one time. I think they are all watching me, and scheming about how I should be living my life. This is an embarrassing quality to admit, but I think that it is very real for a lot of people. I literally walk down the street, see someone I don't know, they may be looking at me or not, but I am devastated and convinced that they were looking at my outfit or my butt and thinking the worst. As if it really matters. To me, it actually does.

To be a perfectionist is an impossible job. To believe that you are good "enough" for someone or something will never be. I am never satisfied with "enough" because in my mind, there isn't such a thing. I want to be fantastic. I have come to learn that I am not satisfied with the things that might make me fantastic because the bar is raised higher and higher every time I reach a "goal". Best grades, best classes, best college, best grad school, best job, etc. I have a tendency to be thinking about the next step instead of living in the moment. My good friend Jenni once said that we have to stop living for the next thing because we're missing out on our lives now. An example of this is, "As soon as I get out of grad school I'm going to move to Boston and get a great job and be the best social worker". Problem with that is I can hardly remember what it was like to live in St. Louis! I was lucky to slow down a bit and meet some of the most amazing people in my life who I miss dearly every single day. My health was what forced me to slow down finally, and try to take in what was happening at that time on that day and not worry about tomorrow.

I bring this whole idea up because it has been one of the biggest challenges for me this past year. A combination of the constant fear of criticism and moving so fast that you can't see what's happening to you has made it difficult to think of myself as "in repair". My boyfriend tells me that I'm a "work in progress" and it's nice to slow down for a second and believe that the road to health is a long one, and I have to be patient. When I was actively involved in my diabulimia, the behaviors lasted for about two years. There were ebbs and flows, and was worse around December '07, but overall, it was a long time. I have to remind myself that the neglect and damage to my body was done over time, and it seems to be much harder to heal now that the destruction is done. Rome wasn't built in a day, and neither was I. It's like when you get a headache first, and then take meds for it, it is much more difficult to rid yourself of the headache. It takes time, relaxation, and maybe a nap. So I have to think about my eating disorder as one looooooong-ass headache, and I'm just now taking a nap.

When I am having trouble reminding myself that I'm a work in progress, and I am down about how I look, and can't understand why this is all just so hard, I read my post-it. It is probably the oldest trick in the book, but I am very grateful for my post-its. Post-its are like your friends who say the right thing every time, and encourage you, and come from the heart. I have a post-it on my computer at work that just says, "Remember". This is a visual cue to me that I have a great support, and that I have a very happy life even if in that moment it doesn't feel like it. It's not perfect, I still struggle, but then again, I'm trying to figure out what is "enough" and that nothing is going to be perfect, (including me).

"I'm in repair, I'm not together, but I'm getting there" (ohhhh thank you John Mayer for feeding my obsession with cheesy quotes).

I'd prefer to call it LIVEabetes...

2009-11-18T11:34:00.000-05:00

My friends and I like to joke around that calling it "Diabetes" will give people the wrong impression and that I would much prefer to call it "Liveabetes". It's a silly thing that lightens the mood every once and a while when I don't feel like giving diabetes the attention it usually needs. Sometimes I feel like diabetes is the worst Bridezilla, so needy and bossy and I feel like punching it in the face. I learned the hard way though, that I can't actually walk away from it, and that it will unfortunately, always win.

I think that I was always kind of predestined to have an eating disorder, and that there were so many factors that I can't just pinpoint one reason or another that was the direct "cause" of it. It's always a lot easier to comprehend bad news when you can figure out why it happened so that you can either fix it or not feel so bad that it wasn't really your fault. With physcial and mental illness, however, there is often no real reason for why it happened and it just kind of does. My eating disorder was not anyone else's fault, and I'm pretty sure it wasn't really mine either. That is not to say that I don't accept what I was doing because in the end, it was my choice to cope that way.

I have made some choices in my life that I'm not so proud of like smoking cigarettes, stealing mailboxes in my hometown, drinking copious amounts of alcohol to lead me to want to stick a rusty nail in my eye as a relief from the pain from the booze. Despite all of those choices however, I have never made such a significant one than when I decided to stop taking my insulin. In the grand scheme of things, stealing mailboxes isn't going to make or break my entryway into Heaven, but I can honestly say that I went from 0 to 60 on the bad decision scale.

I have been a perfectionist all of my life. I put a lot of value on what other people say to me and what they may or may not be thinking. When I was first diagnosed I was a gaunt 102 pounds, and the same height I am now at 5'5". I was also 13 and becoming elbow deep in puberty, growing out of my juniors jeans and having to wear a real bra. By the time I was a freshman in high school I had put on the weight I had lost when I was sick and then some. I was called fat by a class member to just hurt my feelings at the time, but it was the first instance when I actually felt that way and that other people noticed too. At this point, I'm sure my story seems pretty typical for your average teenage high school student, but I decided to take matters in my own hands and prove to everyone that diabetes wasn't going to make me fat anymore and that I was going to be like all the other size 2 girls who could eat what they wanted and remain so small.

Senior year in high school I found myself omitting food. I had read an article in a magazine about a girl with anorexia and she shared her "meal plan" with the readers. I took to her plan and ate 6 grapes for breakfast, 4 saltines for lunch, coffee after school and nothing for dinner for a couple of months. With the diabetes playing a role, I stopped bolusing for the little food I was eating for fear of going low and having to eat more. At that time I was on the insulin pump and was managing everything on a basil rate. I lost weight but the diet plan I was on was not sustainable. Once lacrosse season started and I was dancing every night for theater rehearsals, I began to eat more regularly and was strong and athletic.

Skipping over most of my high school and college life, I can jump to the part where my liveabetes was no longer worthy of that name. After graduating from college and moving to Martha's Vineyard with my best friend to work two jobs and live the island life before graduate school, I began to ween myself off of the insulin pump. By the time I left for St. Louis I had stopped using the pump and found myself attempting to manage on just insulin shots by myself. I stopped asking for help and I stopped caring. I started to fit into my clothes better, then I had to buy smaller clothes, and I felt sexier than ever because I was smaller than I'd been since the beginning of high school. I was working with drug and alcohol addicted women, taking full time classes at the top grad school in the country for social work, and found myself consumed with sadness and covering it up with my new obsession. I was determined to find the magic numbers; how little insulin it took to live, how small my jean size would go, how high I could maintain grades, what blood glucose level would be the maximum before I had to go to the hospital, etc. My life revolved around numbers more than I had ever envisioned it to.

By Christmas of 2007, a year and a half after grad school, I had widdled down to a size 0, my hair fell out, I couldn't stay awake for longer than 1/2 an hour without requiring a nap. My gums were infected and hurt, I was constantly hot and sweating in the dead of winter, I lost color in my face, I was peeing all of the time, housing food and drinks, and had what seemed like a constant yeast infection. I would wake up because my feet and legs would cramp up so badly that I would fall over because they seemed stuck that way. One time I called my friend Leah, crying because my ankles had swollen up so badly from the edema. At this point, I couldn't stop the behaviors and the weight was just falling off of me. With no muscle, extreme dehydration, and no longer taking my lantus shots I had been depleted of energy and all nutrients. I was officially in diabetic ketoacidosis for months and without me knowing it, I was suffering from a little thing unofficially called, diabulimia.

All of this recall is very sad for me, but it also seems like it's a lifetime away. After two hospitalizations, family intervention, and help from the Joslin Diabetes Center and an eating disorder clinic in Cambridge, MA, I find myself a year in recovery from diabulimia. I am trying to bring this disease to reality and to the awareness of people who don't know about it, but also to encourage those Type I diabetics who are actively involved in the omission or manipulation of their insulin to reach out. I am not going to say that it's easy and that I didn't want to give up often, but that my life is so much better now that I am no longer so ill.

I have much to say about all of this, but I will leave that for another day. When it comes down to it, the happiness that I never thought I could feel is present in my life now, but I had to work for it. Unfortunately I had to hit rock bottom and almost die from my liveabetes to see it and feel it, but I can honestly say now that there is nothing worth going back to that world that I knew so well. I hope that this helps people who are suffering to see that there is so much more to life than this spiraling and cyclical tunnel. For those of you who had to watch me go through it and/or are seeing me come out of it, thanks for pulling me out of my coma with your support.

Please feel free to comment on this post. I want to use this as a forum to talk about these issues and also to truly be helpful so I'd appreciate any kind of feedback!

DeNial aint just a river in Egypt...

2009-11-17T11:07:00.000-05:00

I think that for my first "real post" it would be appropriate to recollect the beginning of this life as I know it. I was diagnosed with Type 1 Diabetes at the age of 13 on January 5th, 1998. This was one month after my Pap Pap died of cancer, and soon after I had my braces removed. In 8th grade, everything is foreign and different and scary and a BIG DEAL. Needless to say, when I was taken to the hospital because I peed in a cup at the pediatricians office and apparently it was no good, I had no idea what was happening but I knew it just kept getting worse and worse. All I could hear was, "You have diabetes" and "You have to go straight to the ER" and "You have to sleep there for a few days" and so on and so on.

The night before I was diagnosed my Mom had witnessed that after a hefty three helpings of a massive turkey dinner, (gravy, biscuits, mashed potatoes, the whole deal) I helped myself to a large bowl of Lucky Charms while my Mom was doing the dishes. Being the smart woman that she is, Mom looked at this as the final "sign" that something was wrong. In two weeks I had dropped over 20 pounds, peed the bed because I was drinking gallons of water constantly, took naps on a regular basis, and stuffed my face like it was my job. These were all symptoms that led to my diagnosis, and eventually would come back to haunt me nearly a decade later.

I would like to put the disclaimer on here that I take full responsibility for my actions and how I've handled my disease, and that I do not blame anyone else for my choices. That being said, being an easily influenced 13 year old may mean that a lot of what I interpreted in the hospital may not have been the best path to start on... I was told that the cure was so close, and that by the time I was in college there was sure to be a cure and that I wasn't going to be diabetic for much longer. At that time college seemed like a lifetime away, but I imagined myself walking through the quad of my hypothetical school diabetes-free. Well, college came and went, grad school came and went, and here I am with my "real job" and all, still diabetic. I had in my mind however, that this wasn't real and it wouldn't be for that long, and that soon it would be over and my reaction looked a lot like, "this isn't really happening to me".

So a little characteristic about me is that I don't like to think that there's anything wrong and that I will live my life like I always do, denying pain or problems or anything that would stop me from doing what I want. This is both a blessing and a burden, because it has been the drive and motivation for me to push through my life, but it has also been the reason why I can ignore some things that are just plain bad for me. I have denied that my body has a serious flaw in that my pancreas does not work, and I have continued to live as though that is not the case. In the hospital, they train medical professionals to tell you, "Don't let the diabetes control you, you control the diabetes". Well, I controlled it by ignoring it and decided that I would do everything that anyone else could do, and more. Chocolate cake? Yes please. Not testing my blood sugar or skipping shots because it'll gross people out? Sure, don't need to anyway. Eventually this type of thinking brought me down a path of serious destruction and nearly killed me.

Like an addiction, the first step is acceptance and admitting to the problem. Hello, my name is Alison, and I'm a Diabetic. This may seem like an easy step to most non-diabetics, but it is a loaded statement for those of us who are pancreatic-impaired. The diabetes part of it is non-negotiable, but how I have dealt with it and lived with it became an addiction for me and I used it to cover up other issues that I couldn't face for a long time. For me it is something that I work on daily, and after many years I can finally start to understand what that really means.

All that being said, I hope to try and recount the realities of how my life has been with this disease. I hope to be honest and not sugar-coat things (pun INtended). I want to be helpful and bring these feelings and experiences out of the closet where they hide for so many of us. Thanks for letting me make my attempt to help.

Welcome to my Blog

2009-11-16T14:47:00.000-05:00

Hi! I am very new at this whole "blogging" thing, but I recently came across a couple of blogs that I admire, and I started thinking about the benefits of a blog. I have been looking for a way to share my experience with diabetes, diabulimia, and recovery, because throughout the past year with all of my searching I have not found nearly enough to describe or prepare me for what I'm going through. I figured that there must be others who are going through this too, or have loved ones who are dealing with this, and the best way for me to help is to provide a resource and a forum for people to learn about the disease as well as share stories and tips for people searching for some kind of explanation.

I'm not an expert or a doctor, nor do I have all of the answers. What I have are the experiences that are my reality, and hopefully I can shed some light on a deadly disease that seems to be unknown to not only the general population, but medical professionals as well. I want to help validate people who are feeling alone in their process, whether they are currently sick, recovering, thinking about using behaviors, unable to identify their symptoms, watching someone who is suffering, or supporting someone.

I hope to start from the "beginning" and recall what it has been like in the past decade with Type I diabetes, how I've changed in my management, perspective, and lifestyle. I want to continue to discuss issues that I come across daily and as they happen because although I'm in "recovery" it is a work in progress every single day.

Thanks for looking!