It hurts to talk about this

https://forum.tudiabetes.org/topics/my-story-1

I have been diabetic since I was 4 years old and am now 33 and every time I look at my papers is says “uncontrolled” or something similar. I am not sure how a person becomes magically “controlled”. I think a pancreas would help a lot :S

I had a lot of the same issues you do.

Has your endo ever checked your thyroid? I am 5’6" and around 170, so not much taller. I have just come to terms with being heavier. Neither of us are exactly huge, but I know a big part of my weight gain was the crapping out of my thyroid. I take synthroid, but it doesn’t really seem to help. I feel better though. The depression is better.

I have generalized anxiety (GAD), too. It sucks, but I really wonder if it is sort of the fate of a diabetic - I mean, we sort of need to be paranoid about all this crap all the time. I really advocate for meds. I mean, you can only do so much therapy and I really think diabetes is a stressful thing.

I would recommend, even though you hate it, to re-try the pump and try a CGM. It is one of the only ways to get better control because you really can always see at least something close to a number. There is no way I could have had this kind of control without the CGM and pump. I like the pump on my belly - I feel like that is less painful, but there are still times. Have you ever tried a numbing cream? I never have, but have heard good things.

I have to say, sometimes treating the anxiety/depression will help the pain, etc.

I don’t think it gets easier. I know I am supposed to say “hang in there, it’ll get better” and all that, but the truth is you have to just deal with it and get on with life. I try not to let diabetes run my life and, to that effect, do my best to deal with it. I would rather deal with the testing and stuff now that let diabetes take a kidney or leg - seems like letting the “d” win, you know? I really like this community, though, it is nice knowing you are not alone because it can help.

Last thing I’d say is, don’t feel bad about crying your eyes out every now and then. Then kick the “d”'s ■■■ :wink:

Honey just rememer we are not what anyone labels us. You are here and that is a great step. We all do what we can every day, sometimes it works, sometimes it doesn’t, but the real strength lies in never giving up. There are hundreds of wonderful people on this site that are much more wise thank I am, and I’m sure they will be more than happy to help in any way they can. Keep reaching out and no matter how hard the issue is to talk about, the more you do, the less it will hurt, I promise.

I am a type 1 since I was 27 so I can’t relate to all the trials and tribulations you have been through growing up as a diabetic. But I will give you all the support that I can, as will others here.

You are special, you are a stong person, you can do this!

thank you.

about the pump. i couldnt stand having that thing on my stomach or side. i felt every part of it, and it did have the cream, it helped with the putting it in part of course but not the rest of the pain. i couldn’t sleep on the side it was on, i couldnt take a shower with it coming off or partially coming off then getting dirty through out the day. i couldnt wrestle around with anyone. before the pump i was perfect weight, i gained aloooooooooooot of weight while on the pump. i probably would be having as much weight problems now if i didn’t have it.

the point is thank you so much for you advise but i dont plan on trying the pump again anytime soon.

thank you!

I went thru the same types of things in the 60"s. No I’m not a flower child. I rebeled as you but , you will get threw it. Take time and relax. I rebeled only to learn that if I did not do it my self no one else would. I sense that you are strong willed. That is GREAT. Let’s talk.
Ray

Welcome, Amnd. Glad you joined. You’ll find support & understanding here.

Sorry for your struggles.

I use syringes. Never had any pain & awful that you did. Maybe you didn’t have the right size needles. Pens left bruises & hurt me. Different things work best for each of us. No one-size-fits-all. We have to keep trying various things to see what works.

Understand how hurtful it was to see that written down. One thing for us to chastize ourselves & quite another to have the stamp of disapproval from an authority figure. Feels like a big ole slap in the face.

Take this as an opportunity to move forward & show that doc (& more importantly yourself!) that you can be better controlled. Nothing to be gained by looking backwards.

Know how hard this is & how tempting it is to throw up your hands in disgust & frustration. Set a small goal & then move on to the next. Overwhelming to tackle too much at once. You can do this! Realize you’ve had diabetes for a long time, but check out www.bloodsugar101.com. I find it recharging & I always learn something new.

Highs & lows take a terrible toll on our emotions. Hard to feel strong & confident about anything when we’re on that roller coaster. Impossible to explain to anyone how exhausting this is. The good news is that having better BG control really does help our mental/emotional life. Speaking with a counselor may help. Dealing with what we have to every day is an impossible burden to handle alone.

P.S. You write very well!

I think I know a little bit of how you feel. :frowning:

I’m 4’9, and right now, and I’m also heavy. I’ve been very heavy most of my life, to the point where 163 seems skinny to me. You see, when I was young, I suddenly gained a lot of weight… and was later diagnosed with Polycystic Ovarian Syndrome. It’s a complicated disease, but basically, my body makes too much insulin. This caused me to gain a lot of weight, and eventually, Type 2 Diabetes. I was already at 248 lbs when I was diagnosed. :frowning: I really had no good way of preventing that… but I have found I can control it with a low carb diet… and with a low carb diet, I have now lost over 70 lbs. One of the most traumatic moments for me… was having my endocrinologist, as a 15 year old girl, call me “morbidly obese,” and shame me for my weight… but not do anything to tell me what was wrong with me. Watching such a phrase being put in your medical file… is really quite hurtful.

But I can tell you… that you are NOT those labels. That is NOT who you are. We are people who simply have needed guidance, and encouragement that we can do things… that we are not failures… And that if given the proper tools to do things with, we can shine. Do not ever let someone who has not lived in your shoes, or gone through your trials, reduce you into some label. You are a person with Diabetes. You are not an “out of control person” with Diabetes. Why are they not the ones who are out of control for not helping you better? It’s always so easy to pass the buck over to the patient, and blame them…

You’ve come to the right place, and let me tell you… We are here for you. We know it’s tough, and sometimes heartbreaking… You just take your time… Learn from others. Find encouragement… Take it one day at a time. No one was born knowing everything… and we can’t be blamed for what we were never given the right tools, whether with emotional encouragement or with knowledge, to do… Welcome to our community. :slight_smile:

The website you linked me to was not available, if you can find another way for me to see it let me know.

I would love to tell you more about my self and my story. i will be sure to comment right now what all i can think of to tell you all. if you dont mind.

Im sorry you are having some struggles too. and your words mean alot to me.

My mother is 75, and for 25 years a T2. Shots for 15 years.
I have seen some of the things doctors write on my mother’s forms… including non-compliant ( I see formyself, that she infact does better than most!), they sometimes make things up (like for example she has a heart condition; she does not!). Half the things they put on forms or what they may sometimes believe or think is just plain wrong.
I have been a teacher of ‘doctors’ at University, so I know what is right and what is wrong.
Believe me, sometimes, yes, they are off track.
But western medicine does its best to help the sick.
The rest is up to you.
You need the heart of a lion (and YOU do), to beat this thing.

My best friend is a T1 from 2 yo and is now 50. The struggle never ends.
Some days are worse than others. But, use that lionheart!!

My bloodsugars arent all that good :frowning:

Here is my new forum i started explaining things a bit more.

Thanks for sharing your story. Took a lot of courage!

Awful that doctor scared you about neuropathy.

My niece has had Type 1 since age 8. Her A1cs have always been in an acceptable range, and were in the 5.5 to 5.8 range the first year of diagnosis (honeymoon). Yet her diagnosis is written as “uncontrollable” as well. And it is the truth. Her blood sugars can be managed, not controlled, meaning a high blood sugar or low blood sugar happens, despite proper basals, unrelated to food, etc. However, I think use of this prefix may help when she prescribes the more expensive insulins, help get insurance coverage for the extra blood sugar strips and coverage for cgms. I would not let the term scare you. It may be that all children are “uncontrollable” due to the growth hormones frequently cropping up, etc. while adult Type 1s are more stable. It may be the “uncontrollable” prefix is not a permanent one.

Thanks for you info. i hope it changes for her and i soon.

I hate the idea of having a pump and do not plan to get one. I completely understand that. You can control your blood sugars without one. A number of people on this site have achieved good A1c results without one. Try the CGM, though, if you can afford it, I can’t imagine being without it now and have been on it for only a few months. Good luck! I remember being 18 once and don’t envy going through that age as a diabetic (I was diagnosed later as a type 1). :slight_smile: