I am new here and after browsing some of the topics and responses it seems most of you are doing fairly well dealing with living with diabetes. Living relatively normal lives. I for one don’t seem to have that luxury. The sugar swings are killing me regularly though sometimes I feel OK. I don’t travel, date or do much of anything cause I rarely feel good. I don’t have any answers other then I am way too sensitive to the sugar fluctuations which are just part of the condition. Case closed! I’m obsessed with some form of cure making to commercialization sooner then later cause I don’t see myself coping with this much longer. I try to accept it when I am feeling OK but that only lasts a short time. After 34 of 43 years I’ve had enough!
First of all, hang in there! You’ve found a good place to be here at tudiabetes – lots of people who are living with similar stresses and frustration, and are happy to share info to help you get where you want to be. Like many, I also hope for a cure. Until it happens there’s tons of support and help available in this community, whether you have specific questions or problems, or just need to vent.
Welcome to the site – it just gets better from here!
There are many here who are struggling mightily with their diabetes. Sometimes I feel like things are going okay, and the the D monster pulls the rug out from under me, and holds me down while kicking me in the face and laughing. I’ve had a particularly bad year, and I find a lot of understanding, care, info, and love here. We try to take care of each other here, and there is always room for new members of the family. Don’t give up, together we are stronger. The great thing about TuDiabetes is, everyone gets it here, and understands what you are going through.
How many times a day do you test? Are you on MDI? I test a lot, so if I see a bad number, I can catch it before it gets worse.
Gary,
Have you ever read the book, “Dr. Bernstein’s Diabetes Solution?” There are a lot of ideas in it that can help you get better control–even if you do not end up eating exactly the way he describes.
If you were taught diabetes management 20 years ago, you were taught a lot of things, especially about diet and how to use insulin, that makes it very hard not to get massive swings. A lot has changed since then, which is why some of the younger people with Type 1 are getting much better control. Plus they have the benefit of the support community. People with diabetes know a lot of things so-called “diabetes educators” who don’t have diabetes may not.
Cutting back on carbohydrates so that you don’t have to use so much insulin to cover the carbs, and also so that you lose the secondary insulin resistance that occurs when our blood sugars go high, can really help smooth things out.
Another thought might be to try different insulins. i cannot get control with humalog. Novolog is better, and Apidra is perfect. Some people find there is a role for R insulin too, because it is slower than the analogs and leaves more room for catching errors.
Do stick around and read what others here post. I hear from people all the time who have had blood sugars MUCH worse than yours–A1cs in the 10+ range–who get back into completely control when they cut down on the carbs or change insulins.
Welcome Gary.
I do not know how you found this team of like minded souls but you hit pay dirt! I have been here a few weeks and I have to say I have not found any source of real time and real life information or examples anywhere else since I have been diagnose.
I recommend you ask a lot of questions about everything and anything that has every puzzled you about your circumstances
Jim
Doing well is just a relative judgement. I’m not doing very well right now, but, I trust that better days will come. Just don’t get stuck in the swamp - make small efforts to paddle out.
There is a lot of wisdom and support here - glad you found us.
Thanks folks but it is what it is. First off I am pretty addicted to carbs so my diet is very high in carbs. I tried the lower carb diet sometime back and just felt like I had no fuel. I know this sounds crazy but I kind of eat what I want but keep the portions moderate. Cereal is my best friend. A bowl for breakfast and before I go to sleep is almost always a given. The lows aren’t as much as a problem as the highs. I actually don’t test anymore but when I did, anything lower then 85 and it was pretty disturbing. I actually felt better at say 40 or 50 then between 60 and 80 which I have no idea why? I also have a big problem with the highs as remember when I tested being totally irritable at numbers like 140 to 160 in between meals yet every once in a while I could be 200 to 250 and not feel that bad. I really feel like I am on drugs with nasty side effects and almost bipolar from the fluctuations and have no control over my life. Sometimes I could go a few days and feel relatively ok but many times not. My last few A1c’s have been on the higher side (mid 8’s) but I had a run of nearly 5 years where I was in the high 5’s to low 6’s but was getting much more low blood sugars to offset the highs. I usually feel the drops and act immediately but sometimes guess wrong and worsen the already high sugar. Though I know I should test to be honest, I’d rather not see the number especially if I feel ok. I’m tired of it all, the expense, the feeling like crap, the diminishing sex drive and the unknowing what other devastating crap may happen down the road. The ironic thing is about 10 years ago I was on 2 injections of NPH per day and knew my levels were way out of control. I finally went back to a new endo who helped me learn the updated method of carb counting and multi injects. Initially I was so happy with the results compared to how I felt prior but then started realizing I still feel like crap when the levels were off. Shortly after that the news of the Islet transplant emerged and I figured it would hopefully just be a matter of time before this diabetes thing would be a thing of the past. I really believed by now I’d be free. Not! I don’t want to give up hope for a better treatment such as ( Faustman, Smartinsulin, LCT) which seem to be some of the more promising therapy’s but even if one pans out it likely still near a decade away. Another ten years of this will clearly put me in my grave!
Ok Gary,
Don’t take any offense from the words I am writing, please.
When I was diagnosed in 1992, my BG number was 1500. I immediately was put on pills. After 2 months, the docs put me on insulin, because I was in DENIAL. I didn’t want this, I didn’t ask for it, I don’t think any of us here on this site wanted it. For a few years, I was used to BG’s in the 500’s, because I refused to test, basically, I was sitting on the Pitty Pot, and it sucked! Not testing is not an option, I’ve found, when it was always so high, I had constant yeast infections, 3 kidney infections, substantial weight loss, and I looked like hell.
The last A1C I had done was 11, and I got chewed out by my endo for not testing with food bolus’s. And it’s my fault. Everything that happens to me is a direct result of what I do, or not do.
I am a realist, and sometimes I may be too blunt, but this disease isn’t kind, but you can’t give up!
Dear Gary. Not me. Barely existing with the diabetes. No longer able to control weight and it is a major victory to have a reading in the normal range. I am a Jonny Come Lately only 11 out of 57 years. Reading’s usually high, lows not that much of a problem. Heard 2 second hand stories about some people totally loosing control including a Doctor who could no longer function without an islet transplant. When he got a functioning pancreas it was like being ressurected from the dead. So yes, a cure would be nice instead of band-aids for a gunshot wound.
Dear Renee. So is my wife. When I suggested a glucose uptake test, she said I do not want to know.
Dear Gary.
I know that it is probably my imagination but I wonder if I am developing an allergy to insulin. I inject and sometimes 5 to 15 minutes later do not feel well. Not caused by low or if so not that I could measure. However no sign of the tummy grease at the injection site irritated or rotting.
Hi Gary,
Welcome to the Tu D community!
Hope you will take the recommendations given, if you want to feel better. You can have the luxury of living a relatively normal life. I’ll think I’m doing well & then everything goes hooey. My husband should get a patience award for putting up with my moods when my BG is wacky.
It’s exhausting, I know. Believe we’re all struggling every day with diabetes. Thankfully, we have a place here to struggle together.
Please test, please consider changing your diet, please talk to your doctor. I eat low carb (formerly a carb junkie) & I feel far better. Everyone I know who eats low carb (though not all are diabetic) feels better. When I ate high carb, I was tired & cranky all the time. I’d fall asleep after meals & now I know why. Eating protein & vegetables gives me tons more energy.
Also want to second Jenny’s other suggestion about investigating changing insulins. I’m one of the weird ones who didn’t do well on Apidra. I’d crash low & then go way high. If I took a lower dosage, the lows wouldn’t be as bad, but the highs were worse. Apridra just worked too fast for me, no matter how I timed it. I’m now on R & life has since been more in control.
That is fascinating Gerri. Going back from high tech fast to R. Dr. Bernstein mentioned that some people would have problems with fast. I wonder if I would do much better on R. I wonder if people should develop a suggested meal and then recommend a complementary insulin sort of matching the kinetics of the food with kinetics of the insulin. Or would it still be so different from person to person as to be useless. At worst you would think it could be a starting point that you could then custom fit for each person.
My favorite collegue at my former work has a PhD in process control so I was describing the problems with blood sugar management. We were amazed that non-diabetics can keep the BG concentration between 70 and 130 at all times. He sympathises with us and said it sounded like a horribly complex problem. Funny that we can fly unstable figther jets at mach 2.5 without any human present. But diabetes is much more difficult! Fellow diabetics we are in one way control geniuses. You wonder if throwing a billion either from the military budget or Wall street bonuses into research for a diabetes control algorithm would do marvels? These could be useful the more so as pumps and continuous glucose monitors become more reliable.
Gary, We are here to listen and understand. I have had diabetes for 41 years and have been through the not wanting to test phase, and sometimes it comes back ( I will “blind bolus” on some instances). I will tell you that the difference in how one feels with a stable blood sugar ( the mood swings are greatly diminished and energy level is consistent) as opposed to wild fluctuations in control, is just remarkable.
Are you particularly stressed by anything on your job? I had a very stressful year with a1c’s in the mid to high 8’s and I did not feel well emotionally nor physically…When this stress was lessened ( I made changes to both my location of the job sites and to my perspective on life, both with God’s help,) and I felt better and a1c’s dropped to 7.1, 7.2 .I am working toward getting them in the 6.3-6.5 level this year of 2009… And it will be WORK :I will have to MONITOR my blood sugars VERY often. I will remind myself that a test is just a number, not a reflection of my self-worth nor an indication of gloom and doom to come. It is just a way of gaining better control and thus a happier life… A test number is JUST A NUMBER…
I believe that Faustman’s research will lead to a viable cure very soon, Even at 54, I DO NOT think that I will live as a type 1 diabetic for the rest of my life. But until this happens, I WANT TO LIVE AND LIVE WELL…Please consider lowering your carb intake,… Processed cereals are nearly always a blood sugar spiker for me and I avoid them. There are some carbs that you simply MUST AVOID on a daily basis. In order not to feel “deprived”,save them for a twice monthly treat and bolus accordingly.Monitor blood glucoses both before and after you eat)
It sounds like you are running a bit of a diabetes -induced depression which leads to a viscious cycle of lack of self-care, feeling even worse physically, and back to less emotional well-being…BETTER CONTROL FOR ME REALLY STABILIZES MY EMOTIONS.
I hope you the best in 2009. Do take care.
God bless
Brunetta
Gary…It may “seem” like we are all living fairly well with diabetes…but that isn’t the case…There are some of us that don’t do very well, and some that do…I am one that isn’t doing that well…I HATE DIABETES, it has completely messed up my life…I am trying very hard to be possitive…but it’s not working…Most of the time, if I haven’t eatten then I will have a “normal” blood sugar…but if I eat…even something low carb, no sugar, no fat, tasteless, the sugars still go up. You just have to take it one day at a night and just start control it and not letting it control you…it’s a daily battle for me, but I am doing it so I don’t have to suffer the consenquences if I don’t…I am 39 and would like to make it longer…
Good luck and if you need to vent or talk…drop me a note…
Dear Gary. Another thought: you are not alone in these feelings. I went recently to a course dealing with the psycholocical aspects of living with a chronic disease. I told them that most times I felt so miserable that I hoped I would not outlive my Dog. 5 years give or take. Well after telling how I felt I was subsequently treated like a leper. Here I know at least there are people who understand my feelings. I do not ask that they agree or to emulate my lack of moral fiber ( this is a term ungenerously applied to the Candian aircrew in the last war when they lost the control of their nerves by being shot to pieces by the Germans at 20,000 above the Reich and refused to fly anymore).
I think it was Nietsche who said that: whatever does not kill you makes you stronger. I am not sure, I think we can suffer from psychological attrition.
Try Dr. Bernstein you never know. I called my son’s favorite food cereal: horse food and told him as a son of a diabetic it was a very bad choice. Of course what a parent says goes right thru the ears with little impedance, but low and behold his Polish friends started weight lifting and he discovered protein. Remains to be seen what muscles he will be able to put on his immense but scranny frame but with protein he has a chance, horse food and diabetes here we come and he would put a lot on his frame like me but it would be fat.
Thanks for all the responses and advice. I guess I shouldn’t have generalized that most people are doing ok with it but the reality is like anything else some are and some aren’t. As bad as it is I still prefer to not test and eat the what I like. From my experience anyway its not necessarily the processed sugar stuff or anything in specific for that matter I may put in my mouth that I can come up with thats causing the physical/emotional distress other then I feel I am just super sensitive to the fluctuations/out of range levels. And thats impossible to stop because its just part of the condition. For example a lady friend that I met through my job also has type 1, she eats very little carbs and much healthier then me and her last A1C was around Ten. But besides diabetes like many of us I have other issues and the diabetes just makes everything a million times worse. The bottom line is when I feel good (and sometimes I do) I am a completely different person. Let’s hope research gives us more good news in 2009.
Dear Gary.
When I was freshly diagonosed with diabetes and still bright eyed and bushy tailed, I met a man in a Costco some where in Oregon who was eating a very large piece of greasy pizza and smoking a cigarette. He had one foot amputated, so I asked him why? He said diabetes. I did not say anything but was shocked at his attitude of absolutely no concession made to his disease. Now I can possibly see a reason why: he no longer wanted to live. We should respect that decision and in my opinion the state should allow something faster than death by pizza.
Gary - I have horrible days lots of the times too… this is a terrific site… I felt like lots of people had it all in control and almost made it look like it was sugar coated… as if this disease wasn’t quite a problem. I think the reason this site might seem so cheerful is (at least for me) I’m like so excited I’ve found so many people out there with diabetes and who are like me… That one thing helps me accept the fact of having this and not feel so alone and down and gloomy. I haven’t really posted when I’m upset yet… normally because I’m crying or angry or just lounging around trying to TV surf. I’ve only had type 1 for like 4 years but I hate being past the “honeymoon” phase because my pancreas does not help me out anymore. I hate taking shots, I hate checking my sugar, I hate feeling like crap and dealing with being high (and don’t even get me started on the lows!!!) because I just feel so wiped out allll the friggin time. What is also hard to get used to is the fact that it’s not new anymore… this isn’t like fun at all. It’s annoying that we never get vacations from all of this. But what’s nice and it’s really cool, is that I have met so many great people through this site, to the point where I’m almost in tears because I feel understood! I don’t know anyone who lives near me (or have any friends) who have diabetes. I felt very alone before joining this site. I would never wish type 1 on anyone but it’s really nice to meet other people out there like me… thank god I’m not alone =) keep your chin up. You are in my prayers.
Dear Amarilis.
This web site is one of the best places to find some kinship as we are mostly all diabetics. I had attended recently a 8 sessions course: Coping with the mental health aspects of living with a chronic disease. There was one diabetic there but she never mentioned the diabetes but focussed on her tragic relationship with her mommy starting before birth 60 years ago and continuing until mommy’s death recently . The injury was so permanent and so irretrivable that I felt quite depressed by the story because it was similar but much more tragic to my sister’s life experience.
Most people there showed no simpathy to diabetics since their opinion all you do is take a shot of insulin and your fine or it is your fault. That would have been my opinion before diabetes also, never would have believe how devastating the disease is. I can easily see that you being a brittle diabetic is really hard since you have to worry constanly about lows, in my case this is maybe a small low ever 2 months but still a horrible enough experience that I can feel what you feel.
My problem is the carbs, weight gain, insulin death spiral which is also a problem. I weight 250 lb with all of the extra weight on the tummy I guess that death will occur at 265 lb ( my friend Bob’s brother in law died at that weight) so there is not a large margin of safety anymore. Trying a low carbs diet so far but not an ounce of weight loss but again no weight gain over the holidays which is a great sign. Also blood sugars are better.
As a mental health counselor please give me your opinion. What is better to boost the moral of our fellow readers at this site. To describe the pain and suffering as it is without embellishment to keep the story real and also on the positive side we can list some things that we have done and are doing to help our health. Or should we sugar coat the situation a bit?