Replies to This Discussion

Permalink Reply by sweetpotater on January 1, 2009 at 12:08pm

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!

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Permalink Reply by Marie B on January 1, 2009 at 1:16pm

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.

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Permalink Reply by Jenny on January 1, 2009 at 2:58pm

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.

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Permalink Reply by NatalieHodge on March 21, 2012 at 7:59pm

I second that about Apidra, has helped us so much with my newly diagnosed 11 year old.

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Permalink Reply by Anthony Holko on January 1, 2009 at 9:47pm

Dear Renee. So is my wife. When I suggested a glucose uptake test, she said I do not want to know.

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Permalink Reply by Jim K on January 1, 2009 at 3:57pm

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

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Permalink Reply by Kathy on January 1, 2009 at 4:03pm

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.

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Permalink Reply by Gary on January 1, 2009 at 7:40pm

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!

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Permalink Reply by Joyce on January 1, 2009 at 8:25pm

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!

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Permalink Reply by Pavlos on February 20, 2010 at 12:59pm

"When I was diagnosed in 1992, my BG number was 1500"

Are you sure about that? I mean really sure. I ask because officially the highest BG ever recorded while the person was still alive, breathing, and not collapsing into DKA was in the 1200s and was set by a reporter covering the war in the Balkans. Even that number has been disputed by doctors who claim the hospital could have been trying to purposefully increase the hype to gain notoriety.
So either you remember wrong or you hold the new record.

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Permalink Reply by scott a wallace on April 20, 2013 at 10:37am

Pavlos when I was DKA 6 years ago and in a coma in hospital, my BG was 1300. The doctors had never seen a number that high. I was in a coma for 5 days. So yes it is possible. I'm lucky to be alive.

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Permalink Reply by T1Teen on April 29, 2013 at 11:19pm

When I was diagnosed my BG was over 1000, how much over that I don't know. and I wasn't even in a coma. Still walking, Still talking, still able to worry about schoolwork. 1200 sounds absolutely normal for diagnosis to me. As for lows, I've been in the 20's and still able to function without assistance.

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