Replies to This Discussion

Permalink Reply by David Granovsky on April 12, 2011 at 7:22pm

I feel for you. My family has a lot of hypoglycemia and my ex-wife's family has a lot of diabetes. When my ex got pregnant, we had the opportunity to have a lot of glucose test and they typically came back inconclusive. When my daughter was diagnosed with the genetic marker for diabetes, it was a devastating blow...but it was also the reason that I switched from a successful architecture career into studying stem cell treatments. In 2005, I decided that I would learn everything I could about stem cell treatments for diabetes and maybe even work for/write for the top diabetes stem cell facility in the world. It's 2011 and I've worked with them, written their website and I am in touch with the top stem cell docs and scientists. I have one of the top stem cell blogs in the world and I wrote a book on stem cell treatments. So, if you want some info on the current state of Stem Cell treatments for Diabetes, give me a shout and I will point you in the right direction. dsgrano@gmail.com Wishing you all the best - David

Permalink Reply by janet on April 13, 2011 at 1:02pm

Thank you for your comments as well as your work with Stem Cell Treatments, the research will help not only Diabetics but a lot of other conditions that people have to face every day.

Permalink Reply by Katie Zeller on April 12, 2011 at 11:40pm

I was exactly where you are at 3 years ago. My husband had an infected toenail. 3 months later, after two 3 week hospital stays he was without a pancreas and a T1 diabetic. He also has to take enzymes to digest food which gives a few other problems, but there we are. He lost most of the sight in one eye and has little strength in his hands - for gripping, that sort of thing.
He had no interest in doing any research. I spent the time he was in hospital doing research on T1 and T2 (didn't know the difference - or anything else about it) and crying. I felt terrible because, while he was the one with the live-changing condition, I was feeling very sorry for myself and mourning the loss of our life as we knew it.
We had just bought an old farmhouse (we're American's, living in France) to restore, we had vast amounts of work to do, and I had no idea how we were going to manage.
I want you to know it gets better.
First, the people here on TuDiabetes were wonderful - answering my questions about diabetes, treatment, problems, anything at all.... They really helped, lots. Use the forums.
Second, he still askes me how much insulin to take and should he do this or that.... And he still relies on me to keep his records up to date and all.... But I have left him alone several times, for several weeks at a time, (I was terrified the first time I did it) and he gets along just fine by himself. So, while he doesn't 'need' me he likes having my input. Don't confuse the two as I initially did. Help him do it all, then ignore him from time to time so he gets used to it.Get him a magnifying glass if need be
Third, I don't really know if our lives are back to normal or not, but it feels like normal now. His BG are still a major focus of every day but no longer the only focus. I no longer wake up at night and listen to him breath. We travel, go out to eat, visit friends. It took a long time, but we got there. The cooking is probably still the hardest, but I no longer thnk anything of making him what he needs and me what I want.
Fourth, I've stopped crying.... it does happen. Don't feel guilty about feeling sorry for yourself. It's natural. You have suffered a loss - of the life you were living. Now you are living a new one, and it's okay to not be happy about it. At times I wasn't sure if I would get past it. I did. And life does get easier again.
Hang in there.
Email me if you need to talk.....
Oh - and my hubs? He's gotten some weight back, his strength back (although he had to have another surgery last summer) and has been busy working on our house. He feels good, we travel... Yes, he does stupid stuff - the last time I left - we had been in Paris. I flew to the states and he was supposed to take the train to our house. He lost his insulin pen, didn't have a spare or his perscription (|I told him to have both) and ended up going to a hospital in Paris to sort out his BG - which was a nightmare because they wanted to admit him.... He managed. We laughed - later.... Our life is pretty normal - except for the ever present kit on the kitchen table.....

Permalink Reply by janet on April 13, 2011 at 12:37pm

Thanks Katie, I know we are still really new to all of this and I keep telling him and myself that things will get better, hard to see it sometimes when everything is upended! Sounds like yours and our life is simular, other than we bought our house in the states but I too worry how much Randy can do. I had to clean out the gutters myself with him as my spotter instead of the other way around this year. What I thought was funny about it was the I am the one afraid of higths and him being my spotter, he can't even tie his shoes (lol wasn't meant to be mean!)! I kept thinking if I fall he can't catch me or keep me from hurting myself, he can't move that fast. It all went fine but I am hoping that next year he will be able to do it and let me spot him!!
He has gained most of his weight back now but we keep a good eye on it so he doesn't gain more then he should but the use of his hands and legs are mostly the worse parts. If I drop something he tells me "Thats my job" cuz most everything slips out and lands on the floor.
Its very scary to leave him alone even for an afternoon, the last time I did I got a call from him telling me that his BG got too low and he spent his afternoon sleeping. Needed me to go to the store cuz he didn't trust himself to drive there at that point.
Our Family doesn't understand why I have a hard time getting away or us getting away to visit, I don't remember it being this hard to do stuff since my children were very young. His parents are 5 hours away and want us to come down to visit but they don't get the fact that right now it's almost impossible to do it. His dad has T2 so they think that since he can go anywhere then Randy should too. My family just doesn't get it at all, they just think he should be STABILIZED by now! People at his work say the same thing, Oh you should have that regulated by now, "I have a friend"..... you know where that is going. No BODY works the same!!!

Anyway Thank You for your post, I really appreciate it and I will email you and thanks for the offer!

BTW How do you like living in France?

Permalink Reply by Katie Zeller on April 13, 2011 at 11:17pm

We love living in France and the health care has been absolutley fantastic.... a bit overprotective at times, even. Lows are scary - but V can sense them quite well and usually is able to eat something right away. He goes low almost every afternoon around 4 and we can not figure out why. As long as Randy stays sensitive to it... that's good. Does he keep something right with him to eat? I buy more chocolate and candy now than I ever did in my life - probably more now in a month than I used to buy in a year! (remember Christmas). And he eats a lot of yogurt, a small one after every meal. It could be because of his lack of pancreas, I don't know that, but it seems to help keep him more even. They started that in the hospital, but, of course, this is France, where everyone ets lots of yogurt and thinks it's essential to good digestion. Also, because of not having a pancreas, he has to work to keep weight on.
I used to work very hard and really get stressed, trying to keep his numbers nice and even, like they say in the books.... couldn't do it. Now we're happy when he has days that are pretty good and we try to react quickly when they're not. What insulin regimen is he using?
As to other people... most of the T2's Ive talked to haven't a clue what T1 is, let alone the differences in treatment.... Loved the one who told me that now that he lost weight he should be fine!

Permalink Reply by janet on April 14, 2011 at 12:39pm

Good healthcare is essential, we got lucky with the first doctor we got him to, he didn't play games or hum hoe about things he was matter of fact and here you go. But he spends time with us at Randy's appt's, we have been at the doc's office for over 2 hours on a couple of occations just reviewing things and getting support. I think that the hardest thing was being diagnosed then heres you inuslin, meter and your sliding scale for when and how much to take. Then your on your own, daily at least! It took a while but he's figured it out pretty good, he stays in the 100 to 160 or so range for the most part but there are day's where it's high and then there are the lows, and it always seems there are no reasons for either of them other than life itself. His last A1C was 5.5 which really shocked us since he started out as a 12.0 but from what I read and hear some call that the honeymoon phase but we'll see it hasn't been long enough to really know how it will all level out at. Randy always takes his lunch cooler where ever we go, keeps cheese, meats and protien bars with him. He also eats a fair amount of Yogart with berry's but peanut butter tends to be one of his life lines. He stays pretty much away from candies and sugar, he has less problems if he does, we are very low carb eaters so we tend to eat lots of whole foods and very little packaged food. He is on Lantus solostar (long lasting) and Apidra solostar (Fast release), it seems to work well for him so far.

We get a lot of, "shouldn't you be regulated by now" or "I have a friend that has Diabetes and they don't have these problems with highs and lows". I just bite my tongue and say "well every BODY is different". But most the time those people are talking about someone that has T2 and they don't understand that they are so totally different. T2 can be regulated with diet, exersize and meds but T1 as you know has a life of it's own and there is no reason sometimes for the highs or lows or at least it's hard to pin point the exact reason.

Living with a T1 can be so difficult sometimes but I think the harder part is living with the Neuropathy and the pain that comes from it. Daily massages will work but it's hard to do daily myself, I get sore from doing them. I am hoping this is something that will subside a little bit as his body begins to recoup. He was very very ill before the diagnoses, days or few weeks from either coma or death, per conversation with the doctor. He had no muscle tissue left and now that I look at him today he was so grey back then, no color in his skin. He doesn't bumble around as bad, he could hardly stand up when we got married, I was holding him up while I was holding his hands and could feel him swaying back and forth. So he has gotten better and i know it will take time to fully recoup but the waiting game can be tedius. Hard to put your life on hold but that's life and we'll get through it. Has V done anything for his neuropathy?? I have told Randy I think it's time to go see a Neurologist to see if there is anything we can do about it but I am sure I know what the doc will say. Physical therapy and Massage, I am not sure how he will react to the physical therapy, I can't even get him to do any kind of exersize because he is aftaid of the lows that can come from it.

Permalink Reply by Katie Zeller on April 14, 2011 at 11:21pm

How can he treat a low with protein? What he uses to treat lows V uses as free (as in no insulin required) snacks - including the peanut butter.. Maybe that's why the lows hit him so severely. When V gets a low he has apple juice or a breakfast bar (sweet) or a piece of chocolate and he's usually over it in 10 minutes or less. What he eats depends on how low he is - a chocolate for a little low, bar for medium, bar and juice for really low... etc. He needs to be taking something that acts fast.
If Randy is getting low a lot he needs to have more carbs in his diet....or less insulin. Whether or not you eat them is immateriel. I often cook potatoes for V for dinner and not for me, just so that he gets the carbs he needs - not a lot, just 5oz - which is 1 potato the size of a small fist.
Do you measure his carbs - weigh them, so he can be consistent? I bought a good scale and measured everything at first. Now I'm pretty good at eyeballing.
As to whether or not it's healthy, the BG doesn't care.... We don't eat package foods, haven't for years. I make everything from scratch, big garden and all that.... Still have to buy the sweets to treat his lows. Oh - hard candy doesn't work, doesn't get absorbed fast enough.
As to the low A1C - our doc pointed out that having a good nunber resulting from too many lows doesn't count (V had the same at one point). Maybe Randy should allow himself to aim for a little higher - say 110 - 180 so that he doesn't go so low. But he needs to get out of them faster for you to get your life back. And he needs to be able to exercise - to get your life back and to help his neuropathy. Basically, V did it by getting back to work and exercising. It took a while, naps and breaks in the beginning, but he kept at it...
I totally agree about there not being a reason for the highs and lows. I know there IS a reason, I just often can't find it. We deided that all we can do is treat it and fix it as fast as possible.
I even resorted to feeding him a sugar packet from a coffee shop once - it worked, yucky, but it worked....

Permalink Reply by janet on April 15, 2011 at 11:10am

Oh no I guess I didn't explain well enough, when his BS is low he usually has a 4oz container of apple juice the follows it up with a 1/2 peanut butter sandwich. If he gets really low 40 to 70 we have Tubes of Gel Frosting that he uses, as long as they aren't open they keep forever and he can take them everywhere with him without worrying that they will melt. He also carry's glucose tabs with him so if he is just a little low he can take those when he's on the go. His diet is just low carb, whole foods. I fix him potatoes but he really doesn’t eat much of them, I make extra so he can use them in the morning for breakfast but he doesn't really like to have them much during the week before work. He doesn't eat hardly any sugar because he feels that when he really wants some he can have it with the appropriate amount of insulin but he doesn't like to do it too much. We have found that his lows tend to come when he gets home from work, he eats before he comes home but sometimes he will stop at the store and not realize how far he walked or how long it took so by the time he gets home he's starting to go down. He is pretty in turn with how it feels but it seems when he out and about he just doesn't feel it as well yet. Like last night, he ate knowing he was going to Costco after work, big store and you never know how far you have to walk just to get to the door. He went in to pick up some Diabeteze Bars, very low on the GI, which is on the other side of the store. He ate pretty well before and didn't take insulin, Berry's, cottage cheese and a 1/2 peanut butter sand, he got home and had some ginger tea and about a 1/2 hour later he said his skin was crawling which means for him he's low. His reading was 78 and he had an apple juice and 1/2 peanut butter sand. It was the extra exercise that brought him down but he said he didn't have to walk but a few yards to the front door and didn't dilly dally in the store just got what he went for and came home. So now we are wondering if the ginger has anything to do with it as he says that most evenings when this happens he has had a pretty strong cup of ginger tea. He makes his own ginger mix from scratch so now I have to go research it to find out if that is what the lows are coming from.
Randy works full time and is very active at his job most the time but the neuropathy seems to stay the same or a little worse. He takes ALA for it but I need to get him to go see a specialist to see it there is anything they can do. He found out about the ALA on here from other people and he says it helps but I would like him to have a less pain then he has if possible.
I have been low carb for many years, I have that scale in my head so that’s not a problem for me, he has to learn how to count the carbs so I help him but he does most of it on his own. It’s a learning process and he is getting pretty good at it but when he does over indulge he has a little harder time at figuring it out. But he only needs to eat it once to figure out what it's going to do to him and the next time he knows what amount of insulin to take.
His doctor and I have tried to get him to keep the numbers a little higher especially at work but he says he needs to figure out what’s best for him. The almost loss of his eyesight scared him and he knows the higher the readings the more damage to his eyes will happen. His job requires him to have to see small changes colors and small print, he is a Print Shop Manager so it is vital for him to keep his eyes as healthy as possible. But I know that the constant up and down can also be just as bad, he just has to reign it in a little better.
I am hoping with the weather getting better I can get him out walking with me a little, he doesn't like the treadmill much. I love it, I am on it at least 5 days a week but some people just can't walk in place, they feel they aren't getting anywhere.
What kind of exercise does V do?? I would love to get him stabilized a bit better so we can do more things we use to, he is getting stronger as I said he was very sick at the beginning of this and he is 200% better then he was then but he does have a ways to go.

Have a great weekend; hope your doing something fun!!