So I am new to this website and have never been into doing things like support groups or anything like that but I have been struggling so badly lately so I decided to try something new. I have had type 1 diabetes since I was 11 years old. When I was in middle school, I switched from using insulin pens to the pump and I ended up gaining a bunch of weight. I got made fun of relentlessly and decided to go back to using insulin pens. I lost all of my weight that I had gained but I got into the habit of ignoring my diabetes. I stopped checking my blood sugar and just stopped caring about it all together. This went on for about 8 years. My a1c was always high and I really only went to the endocrinologist for my prescription refills. Recently, I was hospitalized because I got really really sick and ended up going into diabetic ketoacidosis. I decided I never wanted to feel like that ever again so I have been trying my best to get everything under control. It has been so hard for me and I know that my family and my boyfriend have been trying to help but I feel like I have felt sicker since I left the hospital and have been trying to control it then I did when I was just ignoring it. I have been missing school and work and everything seems to be snow balling out of control. I feel like every conversation that I have with my parents or my boyfriend is about my diabetes and it is effecting my relationship with them. Diabetes doesn’t run in my family and I don’t know anyone who has it to be able to relate to or at least have some idea of how I feel. I have just been feeling very depressed lately and have had such a hard time getting my blood sugar under control. I just don’t know what to do. Anyways, I don’t really know how these forums work or anything but I guess it is just nice to vent. Thanks for listening.
Hello, I know what you mean with everything your going through. Ive been diabetic since I was 4 and I’m 21 now. Im having trohble getting mine under control as well. And I could use a friend to vent too as well! Just letting you know I am here for you if you need a friend!
Thanks! I don’t normally do things like this but I think it might help to talk to someone that understands what it’s like ya know? If you need anyone to talk to I’ll definitely do my best to help you as well!
McKenzie,
I feel for you and can understand what you are going through, but you have taken a big step by taking a look at where you are and who you are - that is you have decided to accept diabetes and put yourself in control. During my more than 58 years with this fun condition I’ve experienced most of the frustrations that you have bunched together into a dozen years.
As far as your diabetes always being the focus of conversation with family and friends, ask them to NOT bring up diabetes, please, unless you open a conversation. True, they are concerned but their nagging may lead to your frustration and could rebel - just tell them you are trying - and please do try for your own good; I’m “paying” now for not taking better care of myself in the 1950s and 1960s. I have a poster that you could print and have handy that comfortably tells people what to say and what NOT to say to a person with diabetes; if you want, I can email it to you.
Right now, I hope that you are feeling better; message me anytime when you want to talk.
Your story could have been written by me! I was diagnosed at 16 and my parents were totally uninvolved with my diabetes, so I floundered around for several years with high A1C’s and minimal BG checks until I started getting my act together after college. I’ve now had it for 32 years, and I am testament to the fact that you can turn your life around. You can’t do anything about what your control was like in the past, but you can move forward and strive for better management. As they say, “This is the first day of the rest of your life.” You can’t control what others think or say about you, but you can be a good example and make sure they know how much you are trying to get things on track. As we all know here, it is not an easy process, it takes baby steps, and it can take years to fully achieve good control. Even when you do, there will be times you fall off the wagon or just need to make adjustments because of how your body changes over the years. We are here for you, and we “get it”, so don’t hesitate to reach out.
I always tell my mom, I want to keep my disease private. Yes, I understand people have to know incase something happens, but it doesn’t have to be the center of everyone conversations. it is easy to be depressed but you have to focus on your health.
Thank you all! As a college student who is trying to figure out things on my own, I just want to know that it does get easier. I am not saying that it will always be easy or it will just go away, but right now I am having the hardest time creating a routine. I’ve tried setting alarms on my phone, but I end up just ignoring them. I am really trying. I know that my body is playing catch up since I have been unhealthy for so long, but I think one of the hardest things for me is that I feel sicker now then when I was just ignoring the disease. I feel bad complaining about it. Diabetes is a burden but it can be managed and its hard for me to express sometimes my frustrations because I feel like I sound so stupid when I say it out loud.
Thank you again for everyone’s support. I was nervous about posting something like this on the internet because it has become such a sensitive subject for me. It is good to know that I am not the only one who has felt this way.
I do have a question–has anyone had any luck with a diabetic nutritionist?
I think we all know how you feel. That’s why this site is so cool.I wish they’d have a Facebook or twitter version of it. Diabetic nutritionist are kind of a waste. Unless they’re a Type 1er. I’ve tried several but the heart of the matter is we already know!! We know what things set us off and what works. My favorite food was Chinese but could never bolus right, so…no Chinese.
The weight thing does happen and we just have to be strong. I know of a TD1 girl that used her diabetes as a weight loss tool. She just let her sugars run up and the weight dropped off. My last point is this. Yes you’ll feel worse once you start taking control. Your body was use to the highs but one case of Ketonacidosis wakes you up fast. It’ll take anywhere fro 3-6 months until you start to feel better with controlled sugars. Also, everyones sweet spot is different. They say shoot for 120 but I feel like crap unless I’m between 150-190 and I turn into a drooling,babbling basket case at 50. My Endo said everyones zone is different so after awhile you’ll know where you feel best. This does suck big time but just think, 60-70 years ago it was a death sentence so we got that goin for us.
I have been there myself. I am 31 now and was diagnosed when I was 10. My own father told me last year that he thought insulin raised my blood sugar. I have had lots of problems with lows and all of this has come from allowing my blood sugar to run high for several years. I fight with my wife all the time about my management of my diabetes but it just never gets anywhere. I may be in the wrong spot but I am very happy to finally connect with other people in the same situations as myself.
hi @msieg007, you can count me in with many years of not checking blood sugar at all, and pretending I didn’t have diabetes throughout college and for years afterwards.
you asked if anyone had luck with a nutritionist - When I decided to change thing, I saw a CDE who was great and knew a lot about nutrition. It may be hit-or-miss but you might have luck too.
I am really concerned that you feel sicker now that you are not ignoring it… sicker how? is it low blood sugar? is it highs and lows? is something else gong on? hope you are ok.
anyway for me, introducing a 20 minute walk after meals, and eating low(er) carb got me started at the beginning. “Think like a pancreas” is a great resource, and helped me very much. if i may - strive for “manageable”, because perfection is too much work.
I’m sorry to hear about your current situation.
One thing you could do to try to get a better handle on this is kindof simplify your plan a little. There are options for treatment now. You know this because you chose pen over pump. There are also options as to the intensiveness of your therapy. Some people wear a pump and CGM and test 10 times day. That’s what they feel is best and if that works them, cool.
But, you don’t necessarily have to do all that. I have chosen not to. Instead, I take Lantus first thing in the morning and bed time and test and Humalog before meals. It works good for me, but I could probably get lower A1Cs if I went whole hog, but choose not to. My A1Cs range from 7 - 7.5 usually. The original DCCT study said A1C below 8.5 significantly lowers the risk of long term complications. The push to go lower and lower below 7 or 6 is largely promoted by pharmaceutical and device manufacturers IMHO.
So, maybe start slow. Test only before meals and take a sliding scale of insulin. No need for reminders etc. It’s time to eat, it’s time to test and dose. Simple. If you want to take it further once you get that down, go for it.
I think a lot of us, myself included, have been through stages similar to what you are in. Getting with the program even partially will pay dividends in how you feel.
Hang in and good luck. We’re here.
Hey to all of you, thank you for having the courage to put yourselves out there. I have never really wanted support with my diabetes because I never thought this “disease” was a big deal. I was diagnosed at age three, I’m twenty-one now. It’s always been a part of my life but after the last few months I’m not so sure anymore. It’s become so difficult especially because l have recently had one horrible experience after another with my doctors. l know Kaiser is not the best health care provider, but I am stuck until I can afford to be independent, but right now I would like a diabetic friend or at least some support from someone with this disease.
Sincerely,
Emily Dietler
i’ll also talk to anyone who wants to text me at 323 454 3018- i am 29 with T1 diabetes since 16.
Hello McKenzie,
I just found this website and the first group I clicked on was this one. Your story is identical to mine, I am a college student as well and I am struggling too, I am trying to get a pump after switching from pens to pump and back to pens again. I have had diabetes since I was ten and I too neglected it until recently and am ready to make changes to feel better but I need help as well. I see that others too are dealing with a similar situation and I think we can all help each other out.
loving all the support from everyone in this group,
Brendan
Hello fellow T1D-ers,
Honestly, very similar story as yours, msieg007. I’m almost 21 and was diagnosed at 17, so I’m kinda new to the diabetic world compared to many others. Ever since my initial honeymoon phase, my a1c has been quite bad. I’ve gotten it down somewhat in the past year, but it’s still not a good number. I think the reason I myself have resisted trying any support groups, online or otherwise, is I’m afraid of being judged by other diabetics. Out of the very few face-to-face conversations I’ve had with other type oners, it seems like many of them complain about having “high” a1Cs when they’re actually in a range that I would be proud of if I could get there again. Even on this very site, there is a message board made my someone who is worried about their a1C going up to a 7.2. (My face when I saw that: -.-) It discourages me because I feel like I can’t actually share how I’m doing with diabetes without being judged or put down by either doctors or other diabetics because of how unhealthy I’m being with it. And I AM being unhealthy! I’m fully aware of that! I’ve just always struggled with being truly disciplined. And like many people on this forum, I also want to work at getting better control, for my sake and for the sake of my loved ones who have to watch from the side lines as I continue to harm my body, now and in the long run. I’m ready to make a change. And I’m so happy I’ve found this site because reading these posts makes me feel like I’m not alone, as cheesy as that sounds. Thanks, guys.
Omygollygee