I was diagnosed when I was 8 years old I don’t know what life is like without it ! The older I get the worse this is getting I went from always having high sugars and being ashamed of it and getting the heat from my doctor about it to the point I’m 25 and I can go weeks without checking my sugar and I got a A1C reading of unknown because it’s over the limit their machine can read which is 15.5 ! I’m always sick waking up about 7 times a night to pee or drink water I’m on the road to finding someone to talk about this but I feel I’m the other one in the world that has no control over diabetes it’s controlling me.
Hi Chrystalee @Negronc, first let me Welcome you to TypeOneNation forum, a place where you can share with and lerrn from and get support from others like you who are trying to figure out how to live with this horrid condition. You may find that you are not “the only one in the world that has no control over diabetes”. I’ve had this diabetes thing for over 60 years and I haven’t yet been able to control it, but I’ve learned how to manage it fairly well and live with it. I will talk with you any time you wish.
Back in the day [the 1950’s], if there was anything like a BG Meter or HbA1c, my numbers would probably be like yours. I had an awakening in the late 60’s and woke up to the fact that I had to do something, so slowly, very slowly I turned my life to caring - I became motivated. You too can do that and many people here will offer you suggestions.
i accept you as you are and will be here.
Hi Chrystalee. As Dennis said, we’ve all been there. However, I don’t think it’s impossible to control diabetes, it does take a lot of effort though! It’s really up to you. Your doctor, friends, and family can’t be with you 24/7. You have to take control and be responsible for your own well being. No one else can do it for you. Your endo is there to help you. Use that.
Start by checking your blood sugar before each meal. Then after each meal. Show these numbers to your endo and ask him/her what you can do to get these numbers more in range. This is how you’ll get the help you need, by giving them the information they need to assist you. Another option would be to wear a CGM. This will show your endo what is happening with your blood sugars. Many endo’s offer devices to wear for a week or two if you don’t want to use one all of the time. - - If you choose to use the one from your endo, you will still need to do the finger sticks, whereas, if you get your own, there are options now available with which you don’t need to do them.
These are just some suggestions to help you start to bring your A1c down. The main thing is to know what your sugars are in order to adjust your dose to correct for the highs/lows.
T1D 54+ years and counting!
Hyperglycemia can kill you. Its sounds like you are dangerously high and need to be admitted into a hospital or facility that deals with managing diabetes.
Crystalee, we all feel your pain and frustration in this community. There are so many tools available that you can use these days, you don’t have to suffer. Based on what you said, I assume you don’t use a CGM. I really think this is your first step towards gaining control. You don’t know what you can’t see. Going form 6-10 finger sticks a day with my daughter, or a CGM (288 readings per day) was a huge game changer. We learned that we didn’t really know how it was impacting her, and we made a lot of changes to her insulin regimen, and it has been huge. Her last A1C dropped from about 9 to 7.3, which our Endo said was pretty outstanding for her age group. Your CGM will become your best friend. And, there are plenty of options depending on exactly what you want and what you can afford. You also didn’t say how you are taking insulin, but I am assuming you are not on a pump. That is very much personal preference, and there is really no reason you can’t make major improvements, even with injections. And, are you seeing an Endo, or just a family doctor? Be sure you are using all the resources that are there. Also, contact your local JDRF office. They are a great resource, and I am sure they would happily put you in contact with people that can help you. At this point, your body is taking a beating, and the longer you wait to take control, the more irreversible the damage will become.
Hey, my a1c is past 13… it’s been that way for a while, and I can’t seem to manage it. I’m only 16, I’ve had t1d since I was 6. It’s never been managed and my family never educated themself enough to where I was able to be healthy. I want to do this on my own now since my family is no help rly, which ik will be hard but maybe I’m hoping I’ll find help, a support buddy if u will, cuz I don’t want to be unhealthy anymore… it’s painful and I can’t live this way
@Saffire hello and welcome to TypeOneNation.
You can have any level of control you want to have. You’ll need the help of doctors and sometimes friends, and you will need to test a lot, especially at the beginning. Do you have enough testing supplies? Is there a doctor you are seeing?
I am afraid it’ll always be a pain in the “___”, well I mean fingers and wherever you test and inject or use insulin. But with help it can be less of a pain - hopefully manageable. I spent years doing the minimum possible to stay alive but now I am OK. hope you are also OK. Please check back in. - Joe
Ugh I know the struggle ur not alone!!! Hence mine is 14 do u have a pump ?
I want to reply because I’m in a similar point in my life. This is my first post here, and my first time discussing diabetes on the interwebs, but your story really resonates with me.
I was diagnosed T1 when I was 14, and Im 29 now. My parents werent very supportive, and before I was out of high school I was living on my own. Ive never associated with anyone else that was type 1, so I just dealt with it on my own. Up until last year, I didnt have health insurance so I just bought over the counter insulin at Walmart and survived doing the bare minimum to take care of myself. It’s easy to do this in your teens and twenties, your body can suffer through it and youre just used to being sick all the time. As I’ve gotten into my late twenties, that’s completely changed. My body cant take the beating anymore. There’s an age where the free ride is over, where irreparable damage occurs at an alarming rate if you let it. I’d guess that as you continue to age, the amount of tolerance decreases.
I decided to start taking Lantus and Humalog, putting effort into my regulation, and checking my sugars maybe once or twice a day about a year and a half ago. To my suprise, my not-so-great insurance FULLY covered the cost of test strips, name brand insulins, and syringes; zero copay without even meeting the deductible. About a year ago, I started getting regular A1C’s. My first one(literally the first since my diagnosis 14 years earlier) was over 10, my doctor was horrified, but I was proud because I could only imagine how exponentially worse they were for half my life. 3 months later, it was 9.1. Once again, disappointed doctor, but estatic me. The beginning of this year was my third A1C, and I had dropped it down to 8.1.
About a week after that A1c this January, I missed my bedtime shot one night. Woke up in the morning with a blood sugar in the 400’s. “Nothing terrible, I’e been here a hundred times before”, I thought. But my vision was a little cloudy, once again not abnormal. Except it didnt go away for several days this time, and that really freaked me out. I went to see an optometrist, and she said I had bleeding in my retinas, the first signs of diabetic retinopathy. She said she would schedule me an appointment with an endocrinologist and an ophthalmologist(eye surgeon), I nodded my head and thought, “Ive never seen an Endo in my life, I just need to do better by myself and not waste money on these doctors”.
Well, for whatever reason, I actually went to both doctors. The Ophthalmologist said I had borderline Retinopathy and that laser surgery or injections would be necessary if my condition didnt improve. I googled those procedures, they literally burn/cauterize your retinas to control the bleeding. They burn whole patches of your vision away to save the rest. Now Im really terrified, so I suck it up and go to see the Endocrinologist.
Endocrinologist is awesome, first doctor that doesnt berate me or make me feel uncomfortable. Never asked a question that made me have to come up with a lie, he just knew the struggle. I guess he’s met a few diabetics… He asks if Ive ever thought about trying a pump, I reply that I know about them but theyre so expensive I never considered one. He sets me up with a sales rep at Medtronic. They discuss my financial options, I could get the top of the line $12,000 670g pump and constant glucose monitor, that automatically makes corrections and automatically regulates my BG for around $2400, with my insurance company footing the rest of the bill. All you do is tell the pump how many carbs are in a meal when you eat it and calibrate the sensor with a finger prick 2 or 3 times a day. Medtronic has payment plans, you can stretch the copay payments all the way out to 4 years(the end of the pump’s warranty), which means you could be paying ~$50 a month. All the rest of my diabetic supplies and pump supplies are about $100 a month.
I started taking my diabetes seriously since I got my pump in February. I had an A1c in March, exactly one month after i started the pump, and I got a 7.4! I expect to see something in the mid to high 6’s when I get my next A1c next month. Seeing your BG reading update every 5 minutes is really life changing, and having to only press a few buttons to get your meal bolus makes it a lot harder to forget them. I will admit the pump is really annonying at times, it’s tethered to you almost 24 hours a day, and screams at you before you go high or low, but getting it is the best decision I’ve made in my entire life.
Now that my sugars are under control(I can literally go days without spending a single minute outside the 80-180 range), I realize how sick I really was before. It seems strange only having to pee two or three times a day, not because I have to pee either, but just because its a convenient time like before i go to work or bed. Not finishing the only Diet Coke I opened that day, because I only need an occasional sip of liquid throughout the day. Honestly, my money savings on diet coke alone probably pay for the pump. When I get a blood sugar above 250, I feel TERRIBLE now, I was so accustomed to it before that it used to seem not that bad. I’ve broken 6 bones in my life, several of them “didnt heal right” and hurt everyday for many years; once I started controlling my BG the bad knee, crooked shoulder, and mangled foot magically stopped hurting. I havent gotten seasonal allergies this year, they plagued me every spring since as far back as I can remember. Irregular bowel movements are no longer a frequent occurrence. I used to get sick a few times a year, but my immune system must be sturdier as that hasnt happened this year.
Maybe, not taking care of Type 1 is part frustration, part financial struggle, part procrastinating it till tomorrow, and part simply trying to ignore it. But, it will catch up with you eventually. Not taking care of it is so much harder on your daily life and function than spending the effort on it. Your body forgets what normal is like and has gotten used to sickness.
The best thing you can do right now is to get health insurance coverage and put it to work. If the insurance company isnt losing money on you as a type1, you’re doing something wrong. For most people, the deductible is most important, it’s the amount you have to pay out of pocket before health insurance kicks in and you only pay copays on all expenses. If you want to step up to the plate, yearly out of pocket max is the most enticing metric. I just switched employers this month, they have 4 health insurance options, and the second to lowest tier is the most beneficial to me. $25 dollars a paycheck in premiums, and I hit my out of pocket max at $3,000. Three grand is a lot of money, but after that, everything is FREE for the rest of the year. As a type1, almost anything you want will be deemed medically necessary by any doctor. The doctor, pharmacy, pump manufacturer, or whoever stands to make money will do all the work for you to fight the insurance company if necessary to get them to approve things.
There is some kind of rock bottom you will need to hit before you decide to take care of yourself. Hopefully it’s sooner rather than later, hopefully it’s before you do permanent damage. You can do it, you will do it. It wont be easy, but it WILL be easier than not doing it.
Hi, i’m fairly new here as well. am 51, been type 1 since i was 5. Reading the OP and replies i am cringeing…i truly thought i was the only D who did stuff like this, for YEARS!! Saw many a 400, but, hey, thats okay cuz at least i wont go low overnight!!
I neglected myself right into DKA, a hospital stay etc. Not a good time. A1c was 14 i think.
Since then i have hooked up with an Endo, and a diabetes educator, cuz i obviously needed some educating. Has only been a month, but i’m seeing test results like i never thought i’d see again. I can’t wait for my next A1c!
It’s tough, it is a full time job, i check many many times a day for now, but i am catching (some) spikes and lows. Sometimes its utterly frustrating, but I do feel better! Best is, i can almost go all night without having to get up and pee!
Not sure how it works on here, but i am willing to be of any help i can.