I was diagnosed a little over a month ago and it has been the scariest month of my life. It has been a little hard getting used to taking insulin, but I'm working on it. I live alone and so I am very nervous of going low so I'm stupidly obsessed with checking my blood sugar. I am pretty sure I'm in the "honeymoon phase" which sucks because that's greater chance of a hypo. And the biggest thing that gets me is before i thought that type one was diagnosed in children, I am 20 and was just diagnosed so I am trying to wrap my mind around all of this! In general I feel like I have really great control of my sugars because I am working very hard to keep them normal, but the work itself is taking a toll on me and the changes are really hard to deal with!
Hi Andrea,
I know this must be very overwhelming. I'm glad you found tudiabetes, you will make friends here who understand what you're going through. Can you join a support group near you for type 1 so you can make some real life friends too? Do you have cgm? Many people find them very helpful to help warn against lows, and then if you need it a diabetes alert dog is also a possibility to consider. I think checking alot is good, don't be afraid to test. Test before you go to sleep of course to see where you are. Are you sensitive to your hypos? I found when I was diagnosed last year that I woke up when I went hypo while I was asleep. It is a lot of work, but this is your first month and I think you will find it gets a little easier, right now you're just overwhelmed with the diagnosis itself as well as with being on insulin.
I'm sorry you've joined the club, but welcome. I was 31 when I was diagnosed with T1 and I wasn't sure what was going on. The online community has saved my sanity more than once. It sounds like you are doing better than I did at dx--it took me several months to stabilize after the hospital--I was coming down off of DKA.
Some thoughts: I don't know what you call obsessing about bs checks--but I test 8-10 times/day. More when I'm changing things up or running high or low. I've heard good justification for 12 times/day. I've heard of people checking 18 times/day. The more data points you have, the more you know, and the more in control you can be. Don't apologize for wanting to know more.
Congrats of having good control of your glucose levels. I've only lived with T1 for--it'll be 5 years in July. There are people here who know a lot about living with diabetes because they've done it for longer than either of us. But we all know how difficult diabetes can be. There are some things my family just doesn't get.
Good luck.
I forgot to add that there is a secret women's type 1 group at facebook I joined 3-4 months ago.. if you would like to join that let me know. People are very helpful and nice there and they're up late too. None of your posts will be visible to anyone other than the group so you have privacy there.
hello Andrea! im so glad you found tudiabetes. it is a great place to get answers to any and every question you have about diabetes and loads of people to listen and commiserate when you need a good moan.
diabetes sucks. if youre not worried about one thing, its something else, and there is constant change. the first couple of months are really hard, but you can do it. it gets easier as you get more D savvy and sophisticated!
i was diagnosed less tan two years ago with type one at 36. i couldnt believe it either. i actually left the doctors office, crossed the street and then went back and asked them to do the glucose test again, arguing that id had two kiwis at lunch.
i live alone too and also worried about going low while at home, especially while asleep. sometimes i test more because of that, if ive been drinking alcohol or doing lots of exercise. at the beginning, when you dont know what your body is doing, test away if you think you need to. its normal to be this freaked out. you were just fine a little while ago and now...whoa!
the pump is supposed to be excellent for control, less hypos, etc. not everybody can get one with whatever insurance they have -me included :(. however, your choice of insulin can help with avoidance of hypos, too. if youre not on insulin analogues (apidra, novorapid or humalog for bolus and lantus or levemir for basal), ask your doctor to change your insulin.
if you havent seen a cde (certified diabetes educator), try seeing one. they seem to be a lot more tuned in to the day to day challenges we have and might be able to address the testing issue.
books that come highly recommended are "think like a páncreas" by Gary Scheiner and "using insulin" by walsh. they are really good for practical information-basal rates and bolusing and counting carbs, etc. they really helped me at the start of this beetus thing. i go back to them now and again.
in addition to those i would recommend chuck eitkens "the book of better". its got some practical info but makes you laugh out loud at the ridiculousness of it all. i cant tell you how many times ive opened it when im having an "i hate diabetes" day. the beginning of this all is really awful-learning all of the day to day stuff, losing certain freedoms and a sense of spontaneity, the knowledge that whatever you do, its not going away, its all pretty rubbish. weve been down that road, we can relate.
let us know how youre doing soon!
I totally understand the feeling of solitude with the disease, sort of "alone in the crowd" deal, even if people are around. In 2008, when I decided to follow several friends' and my wife's advice to try a pump, I was familiar w/ message boards from playing fantasy baseball and wondered "hmmm, I wonder if there's diabetes stuff out there?" I found the ADA boards but moved here after running into a patch of annoying login issues there. I prefer to have one "hangout" most of the time but have found the type of information exchanged here to be totally useful but, just as useful, is the feeling of solidarity I get from seeing other people dealing with the same stuff!! As the Tu motto goes "you are not alone!"
RE: "obsession", the testing paradigm I've come up with is about a dozen/ day (although my rx is for 14 and I don't actually count...):
1) wake up, test bg
2) before eating test BG
3) before driving to work test bg
4) 2 hours after eating test bg
5) lunch test BG
6) 2 hours post lunch test bg
7) drive home test BG
8) get home, run 3 miles...oh wait, don't forget to test your bg!
9) post-exercise maybe, maybe not, maybe eat dinner and, you guessed it, test BG
10) 2 hours post BG, test BG ****AGAIN****
12) stay up late? Maybe squeeze in another one, what if you have errands to run, what if you want to exercise more (when it's nicer out, I'll run 6-7 miles during the week, more on the weekends...a lot of times, I'll run a long run on Saturday and then a 20ish mile bike ride for fun, speed and recovery on Sunday...there's several extra strips in there...).
I hope that helps but you are in a good place here and I hope you enjoy it as much as I have. That is are able to enjoy the feeling of solidarity in the face of a disease that suxx...
I'm glad you joined us. I know it can be totally overwhelming. Being told you have an incurable condition and you will have to do all this stuff to take care of yourself or really, really bad stuff will happen. Well, let me just say, everything is going to be ok. Yes, diabetes is a real pain. But these days we have wonderful tools that let us lead long, happy and healthy lives. Yes, healthy lives.
Please understand, being diagnosed is an emotional trauma. You need to expect to really go through a rough time. When I was diagnosed, I went through feelings like I was dying. But you aren't dying and all this new stuff, all the details. It will become easier and soon, much of the stuff will seem second nature. So please, when you get really sad or scared, just look yourself in the mirror and remind yourself. Everything is going to be ok. And it will be.
Welcome! As you can see from the responses above, you are not alone. The folks here have varying levels od experience with D, as well as varying philosophies. This diversity is wonderful, supportive and helpful!
Just to add, you now understand the difference between T1 and T2? T1 is a disorder of the immune system which impacts the ability to produce insulin in the body. As a result, T1s must take insulin. T2 folks may still be producing insulin, producing less insulin or their body has developed resistance to the insulin they do produce. You will find a lot of T1s on TU who were diagnosed much later in life--in their 50s or later. There is a lot of inaccurate information that is attached to diabetes.
You will figure it out, but it still difficult every day--to varying degrees of course. Keep testing, a support group is a good idea, and they are psychologists out there who help people deal with chronic illness--that might really help you.
And, of course, stay here and get to know us!
This site is a little Zen - no matter what you need there is someone willing and able to share and help. I was dxed on my 21st birthday and 42 years later I am still learning from the people on this site. Don't self-censor or limit your questions to "big" issues. Everything is big when you are beginning your D-journey.
Hey Andrea, sorry you had to join our club! I was recently dx type1 in November 2012 at the age of 34, and spent 5 days in ICU with DKA. Going from a competitive mountain biker, who rode 100 plus miles a week and then raced on the weekends and was never sick to that level was sooo scary. I totally get where you are coming from. Things seem totally overwhelming in the beginning, but does get easier after a bit although it is always going to be a challenge. I live alone also and test around 10-12 times per day, or more if I am doing prolonged exercise. I have had a few hypos during the night, but they have always woken me up. I recently switched to a pump, and highly recommend it, as it allows much more precise control than the injections did. The best advice that I can offer is to read as much as possible about diabetes and education yourself, and don't be afraid to ask a lot of questions. I am sure that I am still in my honeymoon phase myself, and my numbers seem to bounce around a bit every couple weeks. I have very few hypos now that I have gotten my insulin dosages dialed in. When I was released from the hospital, the dosages that they gave me were way to high (35 total units per day). I was using about 22 total when I went off of shots, and even less now with my pump. Things will settle down, just give it a bit of time. After a few months things start to seem normal, and just an everyday part of life. i am back to my old self as far as exercise and lifestyle goes, just with more snacks in my pack! lol
Best of luck!!
Hi Andrea, 28 years ago, I was in your shoes too.
You've received some great advice already and this is a wonderful community to come to for support. 28 years ago, this is definitely something that did not exist and, thanks to Manny and everybody here, no matter how you decide to manage your condition (Pump of every flavor vs MDI, low carb, paleo, "eat to you meter", etc etc), you will not have to totally re-invent the wheel.
The biggest advice I have to give is to put everything you've heard about cures and being able to live without diabetes sometime "in the next 5 years" out of your mind. If there is one thing I regret about my own diabetes history is listening to that malarkey. I know that everybody from my trusted endo to the nurse who cared for me during my first hospital stay meant well and just wanted to give me hope to get through some of the most demanding times to come, but it set up too many false expectations that just lead to a complete diabetes management crash and burnout after 5, then 10, then 15 years of nothing as far as cure was concerned.
Your best hope for a very bright future is close management and keeping your blood sugars as normal as they can be, however you can achieve that. It's tough, it's work, it's heartbreaking sometimes, it's scary, but it's completely doable. Things have definitely changed for you but effective diabetes management does not mean giving up everything in your life that you love.
Management does get easier, but not because it is easy. Like a virtuoso, you will get better with practice and vigilance.
I was dx'd on Sept. 1, 2010, after suffering a miscarriage. In a way the miscarriage saved me, because if I had not miscarried, I would not have known I had diabetes. I was first dx'd with type 2, but by Feb 2011 I was type 1. I had 2 more miscarriages before getting on the OmniPod pump. I was 39 when dx'd. I had GD with my 3rd child and none of my Dr's checked me after my pregnancy to see if I developed type 2. I went over 6 years not knowing. It was very hard at first when I found out. All I could think about was all the foods I would have to give up. I LOVE food. My new Endo ( I ditched the old jerk when he was wanting to up my insulin dose when I was already crashing on the amount I was taking)told me I would find my click and he was right. I did a lot of research on diabetes and foods that can help. It helped me a lot to accept having T1. I got pregnant again once on the pump and had my bg where they would need to be if I were already pregnant. I too feared crashing during the night, but one thing I found for my self, was that I would always wake up when I was low. I don't know if everyone does this, but I do. I can't stand being hot and when I crash I get the cold sweats, which wakes me up. I tested a lot during my pregnancy, up to 10 times a day. Something my Endo told me that has helped a lot as well was that it's ok to take a break for a day or two, once in a while from all the counting and testing. My Endo is T1 as well and has been for over 20 years.
I hope you can find comfort in knowing that you are not alone and that there are people out there to help you and support you on this journey.
Oh and I now have a beautiful and very smart 14 month old little girl, who lights up everyone's life that meets her.
Hang in there my friend. I was 28 years old when I was diagnosed 20 years ago. I was scared, anxious and very depressed. It will get better. Right now I am sure that you are very overwhelmed because you are still learning how to live with diabetes. The more you learn the more you take control away from diabetes and give it to yourself. Diabetes is not a death sentence like other disease can be like cancer. You can whip this thing and take back control of your life. Keep reading everything you can get you hands on and talk with people. The fact that you joined TuDiabetes and reached out for help is awesome. Keep doing that. I did the opposite and retreated inside myself and shut everyone out. Big mistake. I was one depressed dude. You are on the right track. Let me know if you ever want to talk.
You are nowhere near alone in this. There are thousands of people right here who know exactly what you’re going through, millions in the world. It does get easier as you figure things out but I won’t kid you it takes a long time for that to happen. Further complicating issues are the concern that a lot of the advice they give you at first (daily carb loads of 300-400 grams, 15 grams of carbs for any reading below 70, etc) may actually be terrible advice for you-- it was for me.
I was diagnosed with “childhood” diabetes with an a1c of 11.1 shortly before my 30th birthday. Many members here were a lot older than that. The notion that it is a childhood disease is outdated and flat wrong. That’s a subject often discussed on this forum, as are anything else you can imagine.
I think you already know that T1 is not a childhood disease. I personally was 17 and can attest that after 37 years it is not a childhood deal.
Being alone and low is scary. I am alone almost every day all day and I have to be very vigilant with my BS. But it is doable. As some suggests test a lot, be deliberate about food and do not for the sake of it run you BS so high you are out of range. Keep pressing toward you Dr suggested blood sugar, you will feel better, trust me.
Finally, hang on, you will get better, by posting here you are on the road. Read the forums, ask questions, but for the sake of clarity do this. Take a deep breath, you can do this.
Rick Phillips
We have all been exactly in the same position as you and understand completely. The learning curve is steep, but you've come to the right place and there is a wealth of great information you can get from this community. Also check out bloodsugar101.com when you have a chance. I found it extremely valuable when I received my diagnosis.
The silver lining of this disease is that it is one of the few chronic conditions where you can greatly control the outcome. In fact, well managed diabetics are exponentially healthier than the non-diabetics around them.
You're going to be fine. Ask a lot of questions, log and measure everything, and remember that it's a process that you will be continually refining.
And there are plenty of people on this site that are there to help.
Hi Andrea,
I am not on this site as much as I should be but came across your post and felt I had to respond. Similar to you, I was diagnosed "late" for Type 1 at age 18 (one month after high school in the suburbs and 1.5 months before moving to downtown Chicago for college). I was also VERY confused and scared and felt very alone in trying to figure it all out. Being a woman in your late teens/early 20s is already hard enough with the self consciousness/food challenge. Food becomes your savior and your enemy. I felt like I was trying to enter the "real world" which was terrifying enough and now I had constant blood sugar testing, carb counting, and the feeling that I was going to be doing it the rest of my life. And let's not forget the comments and questions you get from everyone :)
The fact that you are obsessed with testing your sugar proves how much you care. You should be proud of yourself :) I vividly remember a constant guilt with low numbers, with high numbers, testing not enough, testing too much, not taking the right amount of insulin, the list goes on. You are right....it certainly takes a toll but eventually you get a hang of it.
I hope after 16 years with it, I could help with a few little pieces of advice:
1. You may feel like it but you are not alone. You will find people around you who can help look out for you without smothering you.
2. Take care of yourself but don't let the disease or the guilt control you. There is a balance that you are tough enough to find. With management, you can boss the disease around a bit :)
3. Remember that it's okay if it takes a while to learn it all.
4. The insurance system can be difficult so don't be afraid to ask questions and advocate for yourself if 1) you don't understand, 2) you feel like you're being talked into something you're not comfortable with or 3) blown off.
5. Low blood sugars are scary but you can set a plan. Have sugar by your bed, in your car, at work and in your purse (although I know how easy it is to forget that sometimes). This can help you feel like you have a plan if you get low and can help alleviate some fear.
6. It's okay to be mad.
7. Final reminder (I promise)...You've got the rest of your life ahead and you're going to be awesome...even with diabetes :)
7. Final reminder (I promise)...You've got the rest of your life ahead and you're going to be awesome...even with diabetes :) I totally agree with you, Erin.
Andrea, welcome to Tudiabetes. You wil find LOTS of support here.
God Bless,
Brunetta
45 years type 1
Andrea, a fair number of the people on this site live alone, including me. It can be scary but, as some have noted, the best approach is prevention. If you have insurance and it allows it, I would encourage you to get the new Dexcom G4 continuous glucose monitor (cgm). (My bias is the Dex as it is the most accurate, again, my bias.) It is my night time lifesaver with is low/high alarms. It does not take the place of BG testing but it does have a warning for lows and highs, with the numbers set by you. And, I sleep with a full arsenal of "helpers," including cgm receiver, BG meter, cell phone, and sugar in bedside table. I am thinking about getting a separate little table for all my diabetes emergency bedtime kit items! Adding my book and water, it can take two trips to bed every night! So just arm yourself with supplies and do not omit the BG checks as needed. If you need to check your BG during the night until you get your night BG settled, you can get used to falling right back to sleep.
One more thing. If you have someone nearby that you trust with your apt. key, you could teach them how to treat a low BG. Code their number so it is one punch on your cell in case you need them during the night. That is a backup that may help you to feel more secure. Of course, 911 if you ever feel that you just can't get to that carb to treat yourself. I am not trying to scare you, just give you emergency options that I hope you will never have to use. Bring your questions and concerns to tudiabetes plus to your diabetes specialist. Everyone wants to help.
Hi, Andrea.
I just wanted to let you know it's okay to be scared and angry and worn out.
If you need to talk or rant or ask questions, we're here. You are not alone, and you can do this.