Dont Suffer In Silence

Please bare with me, as this will be a lengthy post, but I promise, you or someone you know feels or felt the exact same way at one point.

I was diagnosed with diabetes when I was 5, I am now 25. I didn’t start taking care of myself until I was 23 (that’s not a good thing, but at least I am now). It took me 18 years to realize how much damage I was actually doing to myself. Any time I went my endo I would always say Im going to try harder and will do everything as instructed. That of course would only last about 2 or 3 days. I never took my blood sugar, I saw it as a pain in the ■■■ more than anything. I didn’t want to carry around a meter or shots to correct high blood sugars. My mom did everything she could to keep me controlled but its impossible to control a young child/teenager. I would eat anything and everything and I just didn’t care. Basically the doctor tried to give me a sliding scale but I never used it, I would just say I did but didn’t. I would take 20 NPH in the morning and 11NPH at night, that’s it. I only remembering using regular when my mom had to give me shots, but once I learned to do it on my own, I slowly stopped caring altogether. I look at that regimen now and think its insane. How could I have only been taking a total of 31 NPH through out the day and eating everything I wanted. I basically lived with a headache 24/7, if I didn’t have a headache I thought something was wrong. I didn’t think it had to do with my diabetes, but surely enough, which I will get into in a bit it was. I was very naïve with my diabetes, I think I just never wanted to accept it. Not until about 2 years ago when I started a full time job and noticed that my headaches were interfering with my work completely that I decided to see a neurologist. From there the neuro had me get some mri’s done to see what the issue was. To make a long story short, I had 2 bulging discs in my neck and ended up going to physical therapy, the headaches seemed to fade away, I still had them but not as frequent, so I thought it was due to that.
As time progressed I was getting annoyed with the diabetes and decided I wanted to find out if I was eligible for a transplant (at the time, to me a transplant was the only answer, I know now that’s not true at all). I went to see the surgeon and he explained to me that I was very young and other than the diabetes I was pretty healthy. He said to at least try the pump and that if I still felt the same way in 6 months to come back and see him. I agreed and decided to find a new endo (since my other endo moved away months ago but I didn’t care enough to look for a new one… I know I know Bad Diabetic). I found an endo who right off the jump rubbed me the wrong way. I tried explaining that new meds made me nervous (I had a bad experience previously that put me in the hospital) and that if maybe we could try a sliding scale and gradually try her new meds. It was basically her way or no way. The only thing that gave me a shock value at that visit was that she told me my blood sugar was about 500. I decided to call the office where my previous doctor worked and tried to find someone in that facility (Winthrop University in Mineola, NY), which they did and set me up with an appointment. I sat down with the endo and discussed everything that had been going on, I was very honest and explained that I never took care of myself and never cared to but I finally “woke up” and knew I had to change or I was going to end up dead. She then set me up with the diabetic educator, this woman is such an amazing person, there are no words to describe how wonderful she is, she changed me completely. Her compassion and understanding helped me so much. With her willing to work with me with the NPH I felt like, you know what, if she’s willing to work with me then I should trust her. I just had a feeling about her being right that I decided to try the Novolog pen and the Lantus Pen. She put me on a regime and explained that it was very important that I always test. I was determined to follow directions this time no matter what. My A1C at that point was about 10.8 (terrible!).
A few months go by and I start to notice a HUGE change in how I felt. I was no longer getting headaches as frequently. But the one thing that I noticed was that I didn’t feel angry or depressed as I always did. My entire life I felt depressed and angry, I never knew why, sure there were something’s that clearly could affect me but sometimes it was nothing that stood out. In high school I went through major depression and constantly thought about ending my life. The only thing that stopped me was that I knew it was selfish and it would destroy my family. Though a social worker at my school helped me out as well. But what Im trying to get at here is that the depression and anger went away. I felt at peace with myself, something I had never felt ever. Its like taking a deep breathe and believing everything was going to be alright. I would now go out of my way to do favors, I enjoyed visiting relatives and spending time with them. Even they saw the change in me, I was never a mean person but they can just tell I was different. The one thing I noticed too was that I wouldn’t have to use the bathroom every two hours either, I could go about 8 hours now without having to pee, it was amazing! I remember when I told my endo she said, its nice to pee like a normal person huh? (lol Love her)The next time I visited my endo my A1C was 7.1! it has never been that low. I was proud of myself. At this time as well is when I found the DOC, you guys are the most amazing group of individuals I have ever come across. I wish I had found this support group when I was younger, but then again back then I hated everything that had to do with diabetes.
My whole reason for posting this is because I want to reach out to anyone who is going through the same thing or knows something who is. All I remember is being embarrassed to have anyone found out I was diabetic and dealing with it in silence. Please do not suffer in silence. If you want, email me, msg me, call me. I would be more than willing to chat with anyone. Depression is a hell of a thing.
I’d like to think I’m a lucky diabetic, the reason I say that is because I always remember my doctor telling me complications start after 10 years, I’ve had this for 20 and im doing great, any time I would have a deep cut or surgery I would heal so quickly, but not everyone is the same so I urge you to take care of yourself now then when its too late. I know its hard but the DOC is here for you, just reach out.
If you took the time to read all of this, I appreciate it.

TRUST ME, YOU WILL ENJOY THE PEACE OF MIND YOU FEEL WHEN YOU ARE NOT ALWAYS HIGH.

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You speak for a lot of us,having been through the mangle myself and still looking for the right path thanks for being so frank best wishes twiddlemthumbs

This is a wonderful post. In reality I think that there are a lot of people who go thrue the stage of not really taking care but it is never easy to accept. I am so glad you are feeling better and your message can also help pther people to take care of themselfs and be aware of their diabetes. I really hope you keeo this going and best wishes for you!

Love this post!!! Your talking about what I done for years & years. I finally “got it” one day and have tryed to do better since. THANK YOU! YOUR WONDERFUL FOR POSTING THIS!!!

AMAZING. You are a blessed. I’ve beeen a diabetic for 23 years and it took me a long time to understand and accept why God picked me. I regret not understanding sooner but I guess I was immature and ingorant. God Bless You and keep up the good work…

Dear Elissa,

It’s always a good thing, to express our feelings!!! I’ve known that since I was required to keep a “journal” in high school. It helped me to deal with my multitude of thoughts and feelings. Eventually, I discovered having a therapist to talk to helped as well. It helped to get the toughts and feelings off the “chest”. So… don’t stop, my friend…

Btw: What is a DOC? Is this initials for some organzation or do you mean “doctor”? Just curious!

And no, no one should be in silence. It doesn’t help as you so frankly pointed out.

Thanks for shaing! {;D

P.S. I’ve had T1 for 40 years now and the only “complication” I have is known as “Gastroparesis” which is nerve damage in the stomach/intestine area… I believe in and eat “certified organic” foods because I believe in and have noticed it works better for my system (even though certified organic foods are more expensive. It’s worth it to me), including reversing some of the “damage” caused by “brittle” diabetes, extreme blood sugar swings, which seem to balance out my A1C’s!! Keep on your path of good and as you’ve seen, it has changed your body for the better… R.R. {;D

this is great! thanks for this post I needed it! rock on

I doubt you will ever see this since this is so many years later. But I have been searching the internet for years about the terrible headaches I have. My eyes would water and be bloodshot. In fact, my eyes would be pink at times. It was from the intensity of the pain. I lived with this pain for years! Every day! Then I finally went to a good diabetes doctor and got more control of my diabetes. And I too saw the difference and realized there was a connection. I’ve been trying to see if there were others that had this experience. Thank you for posting. I wish I had seen it back then.

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@NikkiLee

Thanks for replying to such an old post. I have been on this site a long time, but don’t remember seeing it.

I found this site (and other DOCs- diabetes online community) when I was looking for technical help with the early cgms (medtronic sof-sensor). But found the technical and emotional support on this site amazing, and kept coming back.

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I saw this post and literally thought I was reading my own story (same age I was diagnosed and same age I started taking care of myself). I ended up with retinopathy and had surgery in my right eye so I am now on a pump and I am really enjoying it so far even though I started out thinking it was the end of the world. It’s so great to see someone else has lived through a similar situation and also turned things around! great job!

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