My Story

My name is Courtney, I am 34 years old and have had T1 for 30 years now. When I was first diagnosed, I remember being scared. Scared of shots, finger sticks, doctors and blood draws. There weren’t many sugar free options back then and I was told I would have to be on a special diet. Lucky for my parents, I was not a picky eater!!! Never minded eating fruits and veggies, but was crushed when a food item was present that I couldn’t indulge in. I remember thinking it just isn’t fair!! As I’ve grown older, I realize there is a lot in life that isn’t fair, and even more that isn’t fair for a PWD. Since the early 80’s, much has changed. A lot hasn’t, but a lot has… The diabetic diet for one has changed, we can now count carbs and eat what we want for the most part. I love that! Probably from the time I was maybe 11 or 12 yrs old, I found ways to hide things and I so regret that. Instead of embracing diabetes, I just wanted to be “normal”. It IS an invisible disease, so why not live like it doesn’t exist either?? That was my subconscious motto, I believe. I lived that way for a very long time b/c I hated it so much. I still hate sooooooooo many things about it, but I’ve finally decided that life is too short anyway, diabetes or not, that I should just do what I’m required to do in order to live the best life possible.
When I was in junior high, life started changing for me. My dad and step mom divorced which was very difficult for me. My step mom was the only mom I knew and she was wonderful! She always tried to make special treats for me to take to school, ones that I could have that wouldn’t affect my BG as much. She always made me feel special and did whatever she could so I would feel “normal”. Anyway, when I was young, I was often yelled at or lectured about bad BG #'s by my dad. Now, I know that it was only b/c he cared and was frustrated about something he couldn’t control, but I wish he had been able to talk to me differently about my diabetes care. I always felt like there was someone watching my every move and analyzing anything I did. Basically, I felt like I was going to get in trouble for not being the perfect diabetic. I wish I had been better informed instead of just having scare tactics used on me. So when my parents divorced, I became the woman of the house and there wasn’t an adult there to help me with my self care. My dad worked 2nd shift, so there was nobody at home supervising. My dad gave us chores to do every day to keep us out of trouble. I guess that worked in a sense, but this is where I started picking up really bad habits regarding my health. I would skip shots, eat whatever I wanted and rarely check my BG. As this disease doesn’t always hurt or show evident symptoms of neglect right away, it was very easy to skip those shots and eat what I wanted. My junior year in high school, my dad met a new woman and by my senior year, they were engaged. Yet another change. She seemed nice enough, but after several years of it just being my brother, my dad and myself, we had managed to get into our comfort zone and when this woman came in, things started to change. In hindsight, these changes were for the better, but these changes were also changing my dad and that was kind of hard to deal with. Right after I graduated from highschool, we moved to a new house, another change… Then I started classes at our local community college, another change… I worked 2 jobs starting my senior year in highschool and continued that first semester of college. What a load, on top of being a diabetic and trying to keep up with the social scene!!! Need I say it? TERRIBLE self care!!! It all became too much, I was very overwhelmed to say the least! I look back and think maybe the depression began in junior high but I was undiagnosed and totally unaware that it was something very common in diabetics. So for several years, I just tried to keep up with everything around me. Everything except my self care!! About a year and a half after highschool, the symptoms of depression really started to become evident. By the time I ended up in the hospital for DKA, I was a mere 78 lbs and I’m 5’2". My parents confronted me with the question of Anorexia. What??? I looked that bad and had no idea. I wasn’t trying to starve myself, I just wasn’t taking care of myself. I had convinced myself that I was dieing from diabetes. I stayed in bed most of the time, pretended like I was going to school during the day and kept one of my part-time jobs, but barely made that happen either. Then I stayed up all night, in bed of course, with insomnia. I finally broke down and asked my parents to take me to the hospital. I was trying to think of the least painful way to commit suicide. I never tried anything, but I did not want to live anymore! The hospital stay, therapy, and anti-depressant got me turned around. I gained my weight back and took much better care of myself. For a while… I was about 20 yrs old at this point. My first major complication reared its head in my direction-diabetic retinopathy. I had several laser treatments and I am still doing just fine in that department after 15 years. Fast forward to 2007-started losing weight again and knew it was b/c I wasn’t caring for myself properly. So before things got way out of hand, I decided to start seeing an endo again. There are only 3 groups in my hometown, 2 of which were on my insurance PPO list, one wasn’t taking new patients. I got stuck with the worst dr. I could ever imagine!!! My first visit, he ridiculed me for not pumping, after I sat in his waiting room for 2 hrs. On future visits, he would ask me why I had a low or high and looked at me like I was an idiot when I didn’t have an explanation. What? First of all, I thought I was doing right by actually recording my BG’s, carbs, insulin, etc. Hadn’t done that since my parents monitored me as a child!!! Second, don’t others have unexplained numbers at times??? I’m not a programmed robot and I have fought against that for most of my life anyway!!! So, basically he guilted me into trying the pump. I did and I hated it for all the reasons I thought I would. Tubing, heavy equipment that doesn’t sit on your waistband right and tubing that would break free in my sleep leaving me with 400+ bg’s in the am!!! I also experienced my worst low ever and since!!! 30 minutes after a meal and bolus, I was at 23 and paralyzed from my neck down. AAAGH!!! Now that was the scariest feeling I have ever physically experienced! I used the pump for 6 months, a pretty fair trial, in my opinion. I decided to discontinue use as well as discontinue my care with that endo. There were a number of reasons why I quit that endo, but I also quit my self care as well. What can I say? I was weak and frustrated and the lack of self care didn’t make it any better. About a year later, my second major complication popped up. I had just acquired the interior design position, (dream job, by the way!!!) at the furniture store I was employed by and spent 2 weeks in Colorado at the corporate store resetting it with all of the other designers in the company. The first week, we worked 85 hours and I was loving it!! But week 2 began and I started having a problem with my right foot. Super painful, swollen and red. No clue what the prob was. I continued working on it for a few days but decided to fly home early to see my podiatrist. For several weeks he could not figure it out. Of course I didn’t have an A1C to report to him and a mere 110 lbs did not classify me as obese, but in the end, he diagnosed me with a charcot foot. I have always known that I must watch my feet for cuts, calluses and that sort of thing, but I had no idea that my arch could collapse b/c of diabetes. After this, I did start seeing a different endo who was an out of network provider. The care with him and the staff was soooooo much better and I actually gave myself a real chance at being healthy. Then I lost my job :frowning: I received a notice by fax at my store that they were eliminating my position, company wide, only 6 of about 35 of us got to keep our jobs. Devistating. No more perfect job for me, no more regular paycheck and worst of all, no more insurance. WTF!!! The stop I made after filing for unemployment was our local public aid office to see if I could get medicaid. Negative. I don’t have children and I’m not disabled, therefor, I did not qualify for any kind of assistance. Look for a new job you say? People were losing their jobs b/c of the economy, company’s weren’t exactly hiring! I did finally acquire a position 8 months later thru a temp agency as a receptionist in a veterinary hospital. Yay!! Love love love dogs! Insurance came 3 months later, but guilt of terrible care and the fear of the really bad A1C kept me from seeking a new endo, until this past January. Depression really started wearing on me and my boyfriend of 8 years didn’t know how to deal with it or how to help me. He doesn’t completely understand diabetes or depression, but he is learning. It got to the point where I was tired of crying and he felt helpless. I knew that if I didn’t start taking care of myself, the complications would come harder and faster as now I am 35 years old and I would not ever get to that true happiness I desire. I would also lose my boyfriend. We have had several discussions since January when I had an anxiety attack and my wake up call. He listens more intently as I explain things to him about diabetes, he looks up nutrition info for me when we eat out, checks in on how I’m doing my self care(without lecturing or being the D-police), runs to the kitchen for juice when I test or feel low, and he’s even been going to my dr appts w/ me. He will often wake me in the middle of the night so I can check my BG and he is so thrilled that I have found the online community for support. As meds and supplies are so costly, even with insurance, he has also been financially supportive and I don’t know what I would do w/o him. He has come so far with trying to understand everything, aside from taking care of myself for me, I couldn’t bear to let him down either.
That is my story, or the basics at least. I am excited to write so much more as I have soooooo many things to say. I welcome all my new and future friends here and I hope as I get the support from all of you, I can be just as supportive! Thanks for reading!

Wow…thank you for sharing your life. So happy to hear things are looking better and glad you have someone to help you rhat obviously loves you. I am the mom of a teen boy who is just beginning his battle w/ this uwelcome disease…that is at times soooo cruel…and at best manageable. I totally respect you and all others that must daily fight the war of diabetes to survive. Keep up the battle…stay strong…don’t let it win.

Wow, you have not had it easy! It is good that you have a good boyfriend who is trying to understand. I suggest sitting down with him with all the leaflets and re-reading them for yourself, and asking him to read them. Tell him that the leaflets are just the basics and different people have different reactions and complications to it. You did nothing wrong as a child to get it in the first place.
I hope and pray that you will start to get yourself the help that you need and that you will soon start to see a difference. We all go through times of depression and not wanting to deal with diabete - I am going through it at the moment. It is called “diabetes burn-out!”. There is a group here on tudiabetes that discusses this.

Just re read part of what you were saying about your boyfriend and one incentive for looking after yourself is that the medications are so expensive, it would be silly to waste them. Use them!

Welcome to TuD and thanks for taking the time to get all that out! Youll find a lot of us, 25+ year folks here. Some had the troubles you and I did, others somehow coped. Its interesting to read your story and see the milestones you noted as things changed. I think I dealt with it by completely rebelling. As you know, that doesnt really work. It took me a good 24 years to finally get things under control and that was just last year. It sounds like youve arrived upon that time yourself. Thats really wonderful that your finding your way through this chaotic hurdle were presented. Something my wife taught me and that always seems to help is to remember tomorrow is always another day to try to achieve my goals with D. I wish you well and hope management becomes easy and second nature.

You have been through more rough times than any child or young adult should have to handle! I really understand the not taking care of yourself part, because I have struggled with that for 20 years. I guess it’s a form of rebellion, like onesaint said. And I learned the consequences the hard way, too.

I’m glad you have your boyfriend – he sounds like a winner! The people here are very supportive too, and you can always be honest about your feelings, just like you were in this blog. Look around at all the groups, and find the ones that appeal to you. Pretty soon, you’ll feel just like a member of the family!

I am a mom with a 13 year old type I son. I just wanted to congratulate you on your continued fight against this horrible disease. Keep working at it and don’t ever give up - YOU are worth the fight!

Welcome and thank you for sharing your story. Being diagnosed in the early 80’s as a kid I can empathise with the whole 80’s outlook on diabetes :slight_smile: My mom enforced a very strict diet…ie ‘sugar is death’ at the time and I did my best to rebel. To her credit she was only towing the line that she had been told by endos etc so I don’t place any blame.
Glad to hear that things are on track and all the best.

Thank you so much for sharing, and being a part of this community. I found the online community in much the same way - feeling so alone and just wanting to know that there were other “real people” living with diabetes out there. Stumbled across a few blogs at the time, and it blossomed from there. Now, we have such incredible places like here at TuD and so many blogs and the support is just overwhelming. It’s been a life-changer for me, and I can’t even say how much it’s helped me cope and better manage my diabetes…