I have been a T1D since I was 17 and I will be 25 this Tuesday! I am a mother to a 7 year old and a 1 year old. Both my miracle babies. I am an uneducated diabetic. I am honestly not a very good diabetic, but I’m trying. I’ve been in DKA about 15 times…one of those times literally almost killed me.
I Ise to just take my insulin randomly, I’m more consistent now, but not like I should be. Anyway. 2 years ago, I collapsed in my house after being sick for several days, thinking it was the flu. My fiance called an ambulance. By the time they got there, I was in and out of consciousness. In the ride to the hospital, I could hear the EMT trying to talk to me to keep me concious, but I couldn’t respond. I remember being wheeled in to a trauma bay, seeing my mom and fiance, then passing out. I remember waking up screaming thinking they were trying to kill me, and then passing out. I wasn’t conscious enough to make any decisions for myself. I wasn’t conscious enough to sign my POA over to my mom, so the doctor did or I was going to die. My mom tried to get me sedated but he said I wouldn’t wake up. They had to put a port in my jugular which I don’t remember happening. I just remember being help down and screaming. I woke up in ICU 2 days later. They told my dad if I didn’t get out of bed when I did and collapse, I would have died with in 24 hours. I’m really looking for education, how to eat healthy, anything starting all to help me get back on track. I’m not trying to die, I don’t want to die…
Hi @MiDanielle, welcome to the site and glad you found us. And happy birthday! I’m sorry to hear you’ve had such a rough time with diabetes. It’s definitely not the type of disease that can ever be ignored. I hope you have a good endocrinologist to work with.
I’ve had Type 1 since I was 9 and I’m now 35. I’ve never been in DKA (aside from perhaps at diagnosis), but I’ve known the struggles of trying to control blood sugar. People on this site use a variety of strategies. Some use pumps, some use multiple daily injections, some use continuous glucose monitors, some eat a low-carb diet, some don’t follow any particular diet, and so on. I think what works best is to experiment and find what fits into your lifestyle.
Since you’ve had so many DKA episodes, I’d highly suggest that you talk to your doctor and read up on “sick day” rules in regards to diabetes management. If your BG is unexpectedly high and especially if you are feeling ill, there are guidelines about checking for ketones so that they can be detected and treated as early as possible.
Aside from that, there are lots of books that can help guide you towards better diabetes control (which I found very helpful). Some of the books I’ve found most helpful over the years are Type 1 Diabetes in Children, Adolescents, and Young Adults; Think Like a Pancreas; Pumping Insulin; Dr. Bernstein’s Diabetes Solution; Sugar Surfing; and Bright Spots and Landmines. These books would give you a broad overview of the strategies available for controlling blood sugar so that you can consider what might fit into your lifestyle the best (and the first book gives a great overview of all aspects of Type 1 diabetes). There are also a ton of people here who are knowledgeable about a wide variety of strategies.
Welcome again. Feel free to ask any questions or respond to any threads you find interesting. I hope you find this site engaging and its members helpful.
@MiDanielle, I’m so sorry that you’ve had such an ordeal with Diabetes. Left untreated, well, you know very well what can happen. The good news is that you are STILL HERE! So, let us help you in whatever ways you need us. Welcome to the forums - there are SO many people here who can help you in so many ways. No one here wants you to die, and we’d like to help you avoid another DKA. You now have more to think about than you - you have to beautiful young ones to care for.
You are in good hands here. How can we help? There isn’t any such thing as a stupid question here if you have legitimate questions that you need help with. There is a plethora of help so I believe you’ll find as soon as you ask a question, or pose a concern, you’re going to get the kind of feedback and help that is going to help you turn the curve - if that’s what you wish to do.
Again, welcome and so sorry you’ve had such a rough time with things so far - but it’s not too late! You’re still young!
My son is almost 4 now - he was diagnosed at 2! I want to get him to the point he’s prepared for what I know will be waiting for him when he becomes an adult.
Hi! Glad you joined. It sounds like you’ve been through the ringer. I’m really sorry to hear you have had such a rough go of it. There is certainly some room for improvement in the overall situation, and I hope we can help…
How are you currently dosing insulin? Are you carb counting? Sliding scale? Fixed doses?
There are a lot of great new tools out there that can help you get a handle on this beast like cgms, new and improved basal and bolus insulins, even inhaled insulins now. We really like to try lots of different things around here and figure out what works well for different people.
I’m glad you joined… you’ll be able to find a great deal of collective wisdom here that can and is willing to help you get this figured out. Feel free to read up and post away, if you want to tell us more specifically about some of the challenges with managing your blood sugar for which you’re looking for solutions, we can start helping to chip away at them…
@MiDanielle So sorry you had to be so rudely woken up. But it’s great that you have the desire now to control the Beast!
As others here have already said, there are many here who can offer whatever help you may require in your quest to control diabetes.
Feel free to start wherever you wish and go at whatever does you are comfortable with.
I’m glad you found us!
Congrats @MIDanielle for signing up for some help on this site - and also that you made it through DKA. Fixing lots of DKA is one of the easier thing to achieve and reaching out is the first step - have hope - everyone is with you
You have to get a good doctor to help you or a diabetic advisor or something - and you have to visit them regularly - the people on here are wise and patient and will help you enormously as they have done for me in the last 6 months but you need a doctor in situ.
I can tell you all the ridiculous things I did to avoid DKA whilst not controlling myself, but I hope you take the other path and work to get it sorted
- regulate your dose, regulate your meals, test frequently or if you have the insurance persevere with a CGM for a few weeks through the frustration as its a life changer.
I DKA’d 7 times - so not near your record, but I didn’t seek help after each time, I just did the minimum for it not to happen all the time and carried on the bad behavior - please don’t do that. The worst time, my parents were called as I didn’t live in the same state to tell them I wasn’t going to make it and they needed to get to London quickly - but somehow I managed to pull through. On two occasions, I refused to go to hospital during DKA and somehow managed to pull through it myself which is absolutely insane
I got through it but it took me 35 yrs - but now I’m very much under control and far happier than I’ve been for a long time. As your so young, you’ve got your whole life to look forward to, so don’t follow my path and just forget about it again. I think reaching out on here tells me that is not going to happen. Be safe. Happy to provide all the advice I can, but others on here are far better role models than me !
Really glad you have joined. As a parent of a T1 teenager, your story is a scary one for me. I think you have already been given a bunch of good ideas on how to proceed. But know that there are many of us here that are offering our support, and pulling for you to get a hold of the tiger. We know it isn’t easy, but you now have two amazing reasons to get everything in control!