Living with Diabetes: Diabetes Doesn't Define Me

I am 25 years old. I am a dreamer, and I am accomplished, and I have diabetes. My disease does not define me. It is a part of who I am and who I will become. I am not alone. This makes me stronger.

| Apr 1, 2009

My whole childhood, I was a bit of a pudgy girl.  At the age of eight, I weighed over 110 pounds, wore a woman's size 8, and stood a mere five feet tall.  I wasn't grossly obese, by any means, but it was enough to keep me off the cheerleading squad and out of the popular crowd at school.  I didn't really have any health issues besides the weight.  

Then I started feeling weak, but only little by little.  When I turned fourteen, I suddenly was seven inches taller and a lot lighter.  My mother feared I was bulimic.  I was just excited that I was finally a tall, skinny girl whom others wanted to be around.  I ate to my heart's content-enough to make a grown man jealous-and drank more than my own body could possibly use.

Sometimes, I'd wake up in the night to drink four or five glasses of water, but I never felt refreshed no matter how much I drank.  Sometimes I drank until I vomited, never feeling the relief of being no longer thirsty.

The morning after I woke up from wetting my bed, I cried as I changed the sheets.  "What's wrong with me?"  I whispered over and over, while sneaking the sheets into the washer.  I was humiliated and frightened.  I weighed 115 pounds and was 5'8" tall. I wore a size 0 that was still too big for me.

After dinner, my mother and I took our usual two-mile walk around the neighborhood.  She told me that in a phone call she'd received, the doctor had suggested that I might have diabetes mellitus.  Diabetes did not run in either side of our family bloodlines.  Where did this disease suddenly come from, and why did I have it?

The following few days seemed to go by in a blur.  I went through the motions of learning how food and exercise affects the body and how to dose and inject insulin.  Everything happened so quickly that I didn't even have time to cry.  The doctors congratulated me when a pound was added to my emaciated frame.  I began slowly gaining weight, but I was emotionally dying inside.  I was selfishly scared to go back to school fat and to become unpopular again.  Suddenly, I was "different" from everyone else.  I overheard one of my best friends telling another girl: "She's only skinny because she's diseased.  Don't share food with her or you'll catch it."  After that, I alienated myself from everyone.  No one in the whole world could comfort me through that time.  My life had changed so quickly!  

I hid my medications from everyone around me.  I swallowed hard when I felt as if I was going to faint due to low blood sugar.  I tested my limits and took only as much insulin as absolutely necessary for me to live.  I stopped eating so that I would have to take fewer shots.  It was the only thing I could control.  I grew angry and tired.  People generally associate diabetes with old or obese people, but I was neither.  It was an embarrassment of a disease.  I was ashamed to tell anyone what was happening to me because they instantly assumed that I had "type 2."  So I didn't talk about it. I was too scared to be different from everyone else.

Eventually, I learned how to fight for my life.  No longer playing the diabetes games of skipping injections, skipping meals, and skipping my sickness, I learned that I had grown antibodies against the insulin.  I switched between medications numerous times.  Among them, the Humulin R and N combination made me take over ten shots per day, which was painful and frustrating.  I was raising my insulin intake dosage almost monthly, yet my eating habits hadn't changed since the last prescription.  I then went to Lantus.  It only required a once per day injection, plus additional shots of Humalog for food intake.  But sometimes Lantus worked too well for me, and I would slip into insulin-shock mini-comas.   I'd take the injection before bed, and then I'd awake to paramedics at my side with IVs of sweetened saline solution to raise my glucose.  My fiancé has, quite literally, saved my life on countless occasions with those 911 calls.  I was terrified of dying and cried myself to sleep almost every night.

Then I was affected by the other side of diabetes: high blood sugars.  I slipped into near fatal bouts of ketoacidosis.  These episodes would land me into the ER within two hours of the first symptoms.  I felt too weak to stand and my blood felt like it was coursing with fire.  Sometimes I could still walk my way into the ER; other times I needed to be carried.  Once there, I'd usually be staying in the ICU for three days or more.  My fight with diabetes was tough, and I wasn't winning it.

My parents, along with insurance, invested in a five thousand dollar insulin pump. Because diabetes is not considered a life-threatening disease by insurance standards, there was a very large co-pay for my parents to settle.  I am thankful every day for their purchase.  It uses only quick response insulin like Novolog and Humalog, and it inserts through a catheter under the skin.  It is the size of a large pager (from back in the day!) and can be carried in a trouser pocket, on a belt clip, or sometimes even concealed in a bra.  My insertion site is sore and I have a few ugly bumps and bruises from keeping the catheter in too long, but it's better than being afraid to go to sleep.  I get self-conscious about the long tube from time to time, but mostly I actually forget that it's there, saving my life every second of every day. 

We "type 1s" are often forgotten.  There are so few of us that it seems we get left behind. Lack of TV commercials and advertisements about us leave America in the mindset that our disease is "no big deal."  It is a struggle, and I become very disheartened.  I have been in denial about my disease for a very long time.

I was told through my teenage years that I wouldn't be able to have children due to stress on my body during pregnancy.  Recently, I found out that I can have children.  I look forward to what this life brings.  I look forward to the advancements in technology that will allow us to research and learn about autoimmune diseases such as this.  The amazing challenges that lie ahead are great.

On my ten-year anniversary with diabetes, my fiancé and I joined three walkathons for the JDRF and ADA.  I cried with joy over how many people were there.  It felt like a place that I fit in.  Fellow diabetics understand what I'm going through.  I'm not an outsider any longer.

I am 25 years old. I am a dreamer, I am accomplished, and I have diabetes.  My disease does not define me.  It is a part of who I am and who I will become.  I am not alone.  This makes me stronger.

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Categories: Blood Sugar, Diabetes, Diabetes, Food, Insulin, Insulin Pumps, Insulin Resistance, Lantus, Living with Diabetes, Type 1 Issues, Type 2 Issues


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Comments

Posted by rivag on 6 April 2009

Hang in there, Katherine, learn all you can and know that you can still have a great life. The more you learn, the more you can control diabetes, and the freer you'll be.

I got type 1 at 18, 37 years ago and hid it for decades, and still lament we are the invisible among all the type 2s, but I think that is changing. Mary Tyler Moore's new book is giving us adults with type 1 a face.

You may also want to check out my own book, "The ABCs Of Loving Yourself With Diabetes," on Amazon. The title says it all, and you deserve to love yourself and know you can still create a great life.

riva www.diabetesstories.com

Posted by Anonymous on 6 April 2009

I got diabetes when I was 3 and have had it for 44 years. I've had my share of problems...retinopathy, decreased kidney function, but I've also led a very normal life. I have 2 healthy teenage boys and am happily married. Diabetes is a part of my life and sometimes it can be a real hassle. But I always tell people I am fortunate to have a disease that I can control and that eating like a a diabetic is the way everyone should eat -- balanced, lowfat and minimal carbs.

Posted by Trekker on 6 April 2009

Thanks for your diabetes story, Katherine, very forthcoming. I've lived with Type 1 for 47 years and hope to soon go on the pump.
I know exactly what you mean about not much being said regarding type 1. To most non-diabetics diabetes is just diabetes with absolutely no idea that there is a difference. I just wish we could have a name change for type 1's.

I've have two children and that was in the days before pumps, better insulins, meters and the understanding of diabetes during pregnancy. Do not be afraid to have kids.

Posted by Anonymous on 6 April 2009

I thank you for this wonderful article. I am a Type 2 myself, but sometimes it can be a lonely disease. People either don't understand or they act like the 'diabetes police'. It is great to hear the struggles and triumphs others have found and know that we are not alone.

Posted by Joan Hoover on 6 April 2009

Katherine, you not only have the most beautiful eyes I have ever seen, but they obviously see the proper place of diabetes in your world very clearly. You have learned the hardest lesson. When you are in control of your diabetes, you have the upper hand and all else is then possible. I won't wish you Luck. You have made your own, but I will wish you much more happiness to come.

Posted by rodinsc on 6 April 2009

Great story Katherine. I know some of what you are feeling.

I also know that things will get better for you. It took me more then 10 years to really learn what I needed to do (I have had type 1 for 25 years now).

Keep learning. Don't be too hard on yourself. Take care.

Posted by Anonymous on 6 April 2009

Hang in there, Katherine. You're an inspiratin to us all. My son is 9 years old and was diagnosed type 1, over 4 years ago. He is also on the insulin pump. This has made a huge difference in managing his diabetes.

Keep networking with JDRF and other type 1's.

Just like you, I often tell my son that diabetes does not define who he is. He handles his diabetes with great courage, as do you.

I wish you peace and much happiness.

Posted by Anonymous on 6 April 2009

Hello Katherine,

From one type 1 Diabetic to another, you have what it takes to be a Diabetic leader and not a follower. Having been a type 1 for over 37 years now I could of used some good sound advise from other life educated diabetics vs some of the ill-advise you get from the medical side sometimes. Just keep looking up, never down or back to where you were before. Bless you!

Posted by Xerelda on 7 April 2009

Katherine, I encourage you to take it a step further and tell all your friends about your diabetes. All my friends know and it's no big deal. Kids can be so unkind, but true friends care. I give myself shots in public, I check my blood sugar in front of them. I do it at the table in a restaurant. They don't treat me any differently. True friends understand.

Posted by Anonymous on 7 April 2009

I am a 24 year old male in the uk, who has suffered with type 1 for over 18 years, and as we do not have insulin pumps over here it is quite a problem to control since people do not seem to understand the problem over here, however I agree that you cannot let this disease ruin your life, but it is easier to take it one day at a time.

Posted by ashley1 on 7 April 2009

I am a 24 year old male in the uk, who has had this disease for over 18 years, and it is hard, we do not have insulin pumps over here so its literally takin this 1 day at a time. However, I agree that not enough is known about it especially in the uk, and there have been times when I have become disillusioned with type 1 and either increased or decreased my injections, but the key is to keep on top of it and not let it bring you down.

Posted by Anonymous on 7 April 2009

I have had Type I diabetes for 56 years and am in better shape than most people my age. Over these many years, I've learned to eat well, exercise daily and live a totally normal life.

However, the early years were horrendous, since I had what is now called diabulemia (which noone, including my doctor and my parents, knew I had) Psychotherapy, for me, was the answer, allowing me to accept the fact that I had a chronic disorder which required constant attention.

I began using an insulin pump about seven years ago and found it makes an enormous differene in my life.

Like any chronic disorder, diabetes must be made an integral part of your life, and acceptance is the key to success.

Posted by Tams on 7 April 2009

I am 35 years old and have had Type 1 diabetes for 31 years. When I read your article I knew exactly how you felt in some situations. I think type 1 diabetes is either not known or completely forgotten. The media spends so much of their efforts on Type 2, society doesn't even know a Type 1 exists. Type 1 is where the cure and funding is needed! Type 1 is the "true" diabetes and it's a real "sore spot" with me when all I hear about is Type 2.
I am so thankful for my finacee! He is amazing with my diabetes. I couldn't ask for a more supportive family and partner.
I remember when I was about 8 yers old, no one would sit with me on the school bus because a few kids told everyone they would catch diabetes if they sat next to me. So the bus driver made me sit with the crossing guard. I was in tears and my mom went marching to the houses of every kid that said something negative to me. I have grown up and thankfully I experience more positive than negative exeperiences regarding my diabetes. But I do know what feeling you experience as a diabetic at a young age and as a 35 year old diabetic. My fiancee and I are also talking about having children and that in itself is a very positive thing for diabetic women.
I am an Animas pump user of only 1 year. It's been quite an adjustment, but everyday I learn something new.
I realize I just wrote a bunch of mumble jumble but I felt like everything related to your article and I just wanted you to know that you're not alone.
I wish you a lifetime of health and happiness.

Posted by Anonymous on 7 April 2009

"Because diabetes is not considered a life-threatening disease by insurance standards, there was a very large co-pay for my parents to settle."

This is what I find absolutely absurd. I was diagnosed with diabetes when I was 12 (I am now 27) and my current insurance does not consider the Guardian Real Time monitoring system for the pump as a "wise investment." In fact, when I was ordering supplies through Medtronic I got into a conversation with the Medtronic representative and she said that when she was talking to my insurance company they would only partially cover the continuous monitoring system if I documented repeated severe low blood sugars.

I was floored because I didn't want this system because I was having low blood sugars. I wanted it to help me control my high blood sugars that occasionally creep up on me during the night. Insurance companies just don't understand that high blood sugars are much more serious over a lifetime than low blood sugars. From a fiscal standpoint, they should be thrilled to be giving their customers these services so that they don't have to pay the amputation, organ failure, heart surgery, and blindness treatments when we are 65.

Anyways, I agree with your sentiment and it was a very nice article. Thanks for sharing.

Posted by Anonymous on 7 April 2009

i am 41 years old man from India. I am Type II diabetic since last 13 years. Diabetics can acheive anything in this world by hard work. we are not inferior than others. this is not disease but a organ disorder. There are n number of great sport persons , even Olympians with Diabtes . So enjoy ur life and mansge this disorder religiously.

Posted by Anonymous on 7 April 2009

I am 65 years old and was diagnosed at age 15. I have been on insulin through many changes in technique, type of insulin, testing, etc. I too have dealt with bad feelings, and not taking care of myself as I should have. You will soon find that you know more about taking care of yourself than your physician does because each individual is unique. You will notice little things that make a difference in your own treatment that you cannot learn from anyone else.

Hang in there and take good care of yourself. I wish you many happy, healthy years ahead!

Posted by ina on 7 April 2009

Dear Katherine,
What a beautiful article you wrote. I was diagnosed with diabetes eight and a half years ago, one month shy of turning 40. I have been on the pump for six and a half years and I love it.
Yes, kids can be cruel. I saw that with my son, who is special needs. On the other side of that, adults can be "know it all's". There is still that "sugar free" myth and it drives me crazy. I have "certain" family members whose mother had diabetes 70 years ago. HELLO...this is 2009. This is not your mother's diabetes.
I have good and bad days, fortunately, more good ones than bad. Believe me, things will get better for you. You're young and you have your whole life in front of you.
Xerelda is right. True friends care. One time, my husband and I went out with another couple. When I took out my needle (I take Symlin too), the lady, who is over 50 started to scream. Needless to say, I had a horrible time that night.
I just received Mary Tyler Moore's book and I can't wait to find some time to read it.
I wish you much luck and happiness.

Posted by Anonymous on 7 April 2009

I wish I had been there to talk with you yhrough those awful times. I was diagnosed at age 3 and this year I am celebrating 50 years. It has been a rough climb to get to where I am today and think it is wonderful to share what you have gone through in your climb. I have 3 children and they are all grown without diabetes thank God. Keep climbing. You will get there too!

Posted by Anonymous on 8 April 2009

a really good article :)
ive had type 1 diabetes since i was 9 and by the time i was 13 i just ignored it.. i did my twice a day needles but checked my BGL once every 4 days. my HBA1c reached 10.4, i was embarresed to tell people about it because they all have the idea that diabetes is due to unhealthiness and i got annoyed with having to explain the difference between type 1 and type 2.
now im 17 and i got a medtronic pump a little less then a year ago and everythings fine, my average has gone right down, im now doing about 6 BGL tests a day and i dont get so embarressed about having type 1.
diabetes doesnt define you as a person or does it break up friendships. Type 1 is becoming more well known here in australia so things are looking up.
thanks for sharing your story, its so easy to relate to!

Posted by dmcvancouver on 9 April 2009

Kathrine - I understand what you have gone thru, because I have done most every thing you have plus more. I was fiagnosed with diabetes at age 7, and have had diabetes for over 50 years. I have had many problems due over the years including seizures as a child, heart bypass surgery over 12 years ago,and neuropathy. I have experienced emotions from denial, anger, frustration, hope, & acceptance, although I have tended to vasulate back and forth, which is normal in any chronic disease process.
I also have been on the insulin infusion pump since 1984, 25 years now. I feel more in control now and I feel that we all are our own practioners, only the individual with diabetes can control their health outcome. There can always be frustrations but you must evaluate and learn from your difficulties in order to improve your overall health condition. I, also, strongly encourge anyone that ins having difficulty controlling the diabetes with multiple insulin injections to consider the insulin infusion pump as an alternative. Control can be accomplished and A1C,s brought down to 7 oe less.

Posted by Anonymous on 20 April 2009

Thanks Katherine for sharing. I understand some of what you are saying. I don't have diabetes, but I am a daddy of a daughter that does. It's devastating to find out that your baby has this disease and you all are confused and frustrated because it seems that no one can really help you. The doctors are not in agreement and how to handle it. There are many psychological issues that need to be dealt with that seem unimportant to the medical community. Getting up in the morning and can't wake up your daughter because her blood sugar has dropped below 40 and she can't wake up and being terrified that she never will. Having to be in the emergency room with her while her blood sugar has skyrocketed over 600 with ketoacidosis (blood sugar turning to acid) just because she vomited while being sick which made her insulin not work! The ups and the downs make you crazy. This organ failure affects many more than the mainstream community realizes. This should be made more public and how devastating this disease is to all involved. This should be put on Oprah or something. My daughter is doing much better now. It's been 11 years. She is out on her own, but it doesn't mean parents don't worry and pray that a cure will be found soon. Long and healthy lives to you all! You are all family to me. God Bless

Posted by Katherine Marple on 20 April 2009

In Response to All:

Thank you all so much for your stories, expressions and well-wishes. I was in tears while reading some of these comments because you all have shared a small piece of your life with me. I have struggled to express myself for years about our disease.

It's hard!

I become very emotional when talking about diabetes, even though I'm usually a very strong, level-headed woman. I once did a stint working volunteer hours at a local children's medical center. Within minutes of being with those little kids, I had to walk out, blubber like a baby in a corner somewhere, and then go back in and try to do some more good.

I wrote a book, "Wretched (this is my sorry)" about diabetes and the troubles and strains it takes on a relationship, as well. It is not autobiographical, but it does have many true elements to it.

The writing was therapy for me to be able to express myself, my worries, my fears, and my small triumphs.

I wish I could address each one of you individually. Your thoughts, and the time you took to respond to my article, are very humbling and very important to me.

I cannot express, even, how much this all has opened my eyes.

I really am not alone! I wish all of you great health, long and happy lives, and the utmost awareness of those around you. Eventually, I too believe that "type one" will have its own name and its own place in the list of diseases.

Diabetes affects so many people and in so many different ways, that we should all be cured, eventually. I'd really like to know what it's like to be "normal" again! haha.

I just listened to the Jonas Brothers' song "A Little Bit Longer" about living with diabetes. It was very sweet and very touching. I'll admit that I, again, cried a little.

Every day, we are getting closer. We just need a little more time and a lot more awareness.

Thank you so much!
Katherine Marple

Posted by Anonymous on 20 April 2009

Dear Katherine, I applaud your courage and your ability to paint word pictures for all of us. You are a beautiful person - I wish you the best in life. Madi

Posted by Anonymous on 3 May 2009

Katherine, may the Lord bless and continue watching over you always. My little girl was diagnosed at age 5. Thank you for the article.

Posted by Anonymous on 5 May 2009

What a wonderful article. I cried my way through it. My 7 year old daughter has diabetes and we are learning something everyday. I really appreciate all of your insights into the teenage years and coping with Type 1. I pray everyday for a cure and then tackle the meals and BGs. We are switching to the pump today and I couldn't be more nervous.

Thanks again Katherine for sharing your life. I look forward to another article after you've given birth. :)

Posted by Fat Cat Anna on 9 May 2009

Katherine - I'm like many here - a diabetic of many years (had diabetes since age of 6). I went thru' a roller coaster ride too - and luckily have come out of it unscathed - tho' overzealous doctors encouraged me at a young age to have tubal ligation saying having children would be too dangerous. If only I'd known better (I was only 18 at the time when this decision was made). Since leaving a job where I was told not to inject/test BG's at work (at a school of all places) - I have discovered the joys of connecting up with people online in various diabetic communities. Wish those had been around when I had diabetes at your age as I'm sure many others will say as well. We don't feel so alone anymore with communities out there like this. I've now even taken on a job writing about diabetes - tho' sometimes it's hard to write about it - as really - diabetes has always been me - and I don't feel any different then others that are "nOrMaL" . I just have a bit of a hiccup in life - and carry on with life as best as I can. BTW, I started pumping last year - after 40 years of MDI - life has never been better! So, keep up the good work - and I look forward to reading more of your adventures in life!

Posted by Anonymous on 20 May 2009

Hi! I can't wait to hear some more of your stories! There is nothing more important in life than sharing what you know and what you'd like to learn. Thank you! Katherine Marple


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