Any type 1 Diabetics???

[JoJo's Mom]

I was just curious if there are any other type 1 Diabetics out there. I am and truthfully, it sucks. Though, I guess it could be worse. I was diagnosed 26 1/2 years ago at the age of 11.

Thought it might be nice to chat with others that deal with the same daily things I have to deal with.

 

[Mackey Mouse]

Brenda, I hope someone checks in here for you.. I am not but I do know someone who deals with it as you do.. We have been out to dinner with her and she is very discreet about taking her insulin, you would not know, unless you knew..

Hugs, it is not an easy to deal with....

 

[JoJo's Mom]

Thanks. No, it's not the easiest thing to deal with. But, I try and tell myself it could be worse.

At least I will never have a fear of needles.

 

[sadeeyore]

Hi Brenda
I don't have diabetes but my DS does, so I kind of know what it's like. DS was diagnosed 21st September 2006. He is 16 now. Not too sure you really want to chat with him . He has coped so much better than I ever thought he would, but I know it's been really hard for him.
I know there are worse things, but it breaks my heart to see him having to inject so much.
I'm not usually on this part of the Dis, just decided to have a quick look this morning.
If you would like to chat, either here or by PM, just let me know, I visit the Disboard most days. Actually if you wanted to chat to my DS I am sure he would chat back. He is still in bed at the moment, so can't ask him. It's just after 8:00 in the morning over here, bit early for 16 year old boys to be awake .
Take care
Helen

 

[pilikia97]

I am Type I! I was diagnosed right after my 9th birthday- ummm...24 years ago now? I will agree that it does have its crappy moments but I keep ticking, lol
So, are you on injections then? What insulin(s) do you take?

And it is really funny: Growing up I did not know any other diabetics. Not in the neighborhood, not in school, not through work- none! I join the Dis 2 years ago or so, and Boom! I have talked to several members who are Type I's either themselves or a close family member is, lol

 

[JoJo's Mom]

Hi Brenda
I don't have diabetes but my DS does, so I kind of know what it's like. DS was diagnosed 21st September 2006. He is 16 now. Not too sure you really want to chat with him . He has coped so much better than I ever thought he would, but I know it's been really hard for him.
I know there are worse things, but it breaks my heart to see him having to inject so much.
I'm not usually on this part of the Dis, just decided to have a quick look this morning.
If you would like to chat, either here or by PM, just let me know, I visit the Disboard most days. Actually if you wanted to chat to my DS I am sure he would chat back. He is still in bed at the moment, so can't ask him. It's just after 8:00 in the morning over here, bit early for 16 year old boys to be awake .
Take care
Helen

Hi Helen - so nice to meet you. Your DS is at a difficult age to find out you have diabetes. I am glad to hear he is doing well with it. My mom always tells me that if there was a way that she could have it instead of me she would switch in a heartbeat. But, that is what mom's do. Being a mom myself, I'd say the same thing.

 

[JoJo's Mom]

I am Type I! I was diagnosed right after my 9th birthday- ummm...24 years ago now? I will agree that it does have its crappy moments but I keep ticking, lol
So, are you on injections then? What insulin(s) do you take?

And it is really funny: Growing up I did not know any other diabetics. Not in the neighborhood, not in school, not through work- none! I join the Dis 2 years ago or so, and Boom! I have talked to several members who are Type I's either themselves or a close family member is, lol

You know, I never really knew anyone growing up that dealt with it either. But, I think now people just talk more openly about it than they used to. Yes, I take injections. I really would love to have the pump, went to classes, etc. However, it's just so expensive. I think that is one of the worst parts of being a diabetic is how expensive I am! Someday....I will have one. For now I take Lantus and Lispro. I do love using the pen. But, the pump would be much better. How about you?

 

[pilikia97]

Good grief yes! It just boggles my mind how expensive most of our supplies are And it is awful how we are at the drug companies mercy and have to pay those prices if we want to maintain our health and keep good control of our glucose values . I remember when the glucose monitors used to be so cost-prohibitive & now it is the darn test strips! (at least the monitor is a one time cost- until ya gotta replace one- but the test strips are every bleedin' month!)

I just bit the bullet and got the MiniMed Paradigm Insulin Pump about 5 months ago so I am still learning the ropes with it. Before that I took 2 injections a day using Humulin NPH and Regular (I know, I know! Appearantly very few diabetics use those anymore, lol, but they had worked for me for so many years that my Dr did not feel the need to change me to something more modern, lol!).

Do you sometimes feel like you are your own science experiment too? Every time I want to try something new, or eat something different that I maybe have not had before, it is a whole learning process over again- what will my sugars do? How do I dose for this? And then there are those darn changes we can't do anything about! Every hormonal change we women go through in life goes and seems to wreak havoc on my glucose levels and control too, lol! That is probably the most frustrating

 

[sadeeyore]

Brenda, I feel the same as your mom, if I could switch places with my DS I would.

DS started using Lantus and Novo Rapid at the beginning of August. He is finding it much better, than having the two injections.

The hospital DS is under organised a five day vacation in July for 12 teenagers with diabetes. They were between 16 and 18 years old, DS had an amazing time and it made him realise that he wasn't so alone.
They also have a youth club at the hospital one evening a week. It isn't just for diabetics, it includes other long term conditions. Since the vacation he started going to the youth club, which I think has really helped him.

In the UK the National Health Service (NHS) is paid for by deductions out of our wages, that covers doctor and hospital visits, then if you need prescription medicine you pay about $14 for each item. There are a few conditions, one of them is diabetes, where you don't pay any extra on top of your deductions. I guess we are lucky we don't have to worry about how much his medication is costing.

Pilikia97 have to agree about eating different foods, sometimes even when he eats the same food and takes the same amount of insulin it doesn't have the same results on his glucose levels . Also if he is stressed his glucose levels rise.

 

[JoJo's Mom]

Stress levels can certainly effect my BS. I guess I had never really paid much attention to that until this year. I started racing a racecar and I have started paying more attention to my sugars on those days. I will check it about 2:00 before I leave to go to the racetrack. It will be just fine, say 120.I won't eat anything and about 6:00 I will check it again before I race for the first time and it could be in the 200's. Once I am done racing for the night, it will go down some. So, I have experienced first hand how stress, adrenalin, nerves, etc. can effect me.

And yes, trying to figure out how much insulin to take can be harder at times. I have a book that I try to use. Of course, not everything I eat is in it so you have to use your best judgement.

Pilikia97 ~ are you liking your pump? I believe that is one of the 3 I was able to choose from. Someday I will have it. For now, everything is running smoothly and my A1C's are coming back great, but for even better control the pump would be the next best step for me. You would think....insurance companies would want us in our best health, wouldn't they want to help us with that? Guess not always I have never figured what I spend a year on prescription co-pays alone, but my DH and I estimated at least over $2000 out of pocket. That doesn't include any co-pays for any of my Dr. appts.

Helen ~ when I was younger and first diagnosed my Dr. kept trying to get me to go to a camp called Camp Needlepoint. I would never go. My parents tried too. Now that I look bad, I really wish I had. That is wonderful that your DS has these great opportunities and he is taking advantage of them. He will look back when he is older and be glad that he did.

I look back 26 years ago and how much things have changed!!!! Back then - there was no testing your BS, it was testing your urine. I had a little kit. I thought I was a scientist! I would put drops of urine in this test tube and drop a tablet in. Whatever color it would bubble to would tell me where I was at. It was weird. Also, everything was based on exchanges, not carbs. I like the carb way much better. People that didn't know anything about it called it "sugar diabetes" (every now and then I will still hear it). The worst is when I will eat something and there is someone leaning over my shoulder saying "should you be eating that?" Ummm....well, I can if I work it into my plan and take insulin for it, etc.(moderation of course) That does get a little irritating. I know they are probably looking out for me, but still.....

Oh, Wed. I am going to this Focus group where I get to talk about type 1 for 2 hours and get paid $125.00!!! I really have no idea what we will be doing or talking about specificly. But, hey for $125.00 why not?

 

[sadeeyore]

I am not sure I would go to a camp called Camp Needlepoint - sounds a little too scary .
The camp DS went on was really relaxed. He seemed to eat more candy and junk for those few days than he would ever eat at home. I think because the other kids DS was on vacation with had all been diabetic for a long time, it really helped him to stop worrying so much if his glucose levels weren't quite right sometimes.
It's amazing really how far treatments have come, I can't imagine my DS having to test his glucose levels like that. I told my DS about how you used to test for BS and his face was kind of like this .
My DS once had a kid at school tell him he shouldn't eat chocolate as it would kill him. I know people are trying to look out for him too, but it must be awful when people comment on the food you are eating.
I hope your talk goes well, sounds like a great job with it paying so much for 2 hours .

 

[pilikia97]

So far, yes, I am loving my pump; And I am kinda kicking myself for not having tried it sooner but I really just was not ready for one I think, lol! I started off using the Continuos Glucose Monitoring device too, but I have been outta work for most of the year now and could not afford to renew the sensors every other month since insurance does not cover any of that part as yet (hopefully that will change in the next year now that the CGM has gotten full FDA approval...).

I did go to a one week sleep-away camp for Juvenile Diabetics (as we were called then, lol!) the summer before I started 6th grade. It was called Camp Triple D, and I will be hanged if I ever figured out what the heck the other two "D"s stood for! That was where I finally learned to give myself my own injections and started weaning myself away from Mom's totalitarian involvement, lol- though to be fair, my pediatrician back then had no experience with child diabetics and showed no faith whatsoever in me being able to do any of it myself (to the point that he refused to sign my medical release so I could get a driver's license when I turned 16! ). Having good doctors really make all the difference in how we handle all that gets thrown our way so I was so glad when we finally changed insurance companies and I was able to see an endocrinologist for my care...

 

[JoJo's Mom]

I am not sure I would go to a camp called Camp Needlepoint - sounds a little too scary .
The camp DS went on was really relaxed. He seemed to eat more candy and junk for those few days than he would ever eat at home. I think because the other kids DS was on vacation with had all been diabetic for a long time, it really helped him to stop worrying so much if his glucose levels weren't quite right sometimes.
It's amazing really how far treatments have come, I can't imagine my DS having to test his glucose levels like that. I told my DS about how you used to test for BS and his face was kind of like this .
My DS once had a kid at school tell him he shouldn't eat chocolate as it would kill him. I know people are trying to look out for him too, but it must be awful when people comment on the food you are eating.
I hope your talk goes well, sounds like a great job with it paying so much for 2 hours .

That is a scary name isn't it? I guess I never thought about it until you pointed it out. Maybe that is why I refused to go! Though, looking back I really wish I would have Chocolate kill people? Well, I guess it really is one of those things that if you don't deal with it, you don't understand it all. When I was diagnosed my mom had no clue what it even was. NO ONE in my family has or had it. Just lucky ole' me

So far, yes, I am loving my pump; And I am kinda kicking myself for not having tried it sooner but I really just was not ready for one I think, lol! I started off using the Continuos Glucose Monitoring device too, but I have been outta work for most of the year now and could not afford to renew the sensors every other month since insurance does not cover any of that part as yet (hopefully that will change in the next year now that the CGM has gotten full FDA approval...).

did go to a one week sleep-away camp for Juvenile Diabetics (as we were called then, lol!) the summer before I started 6th grade. It was called Camp Triple D, and I will be hanged if I ever figured out what the heck the other two "D"s stood for! That was where I finally learned to give myself my own injections and started weaning myself away from Mom's totalitarian involvement, lol- though to be fair, my pediatrician back then had no experience with child diabetics and showed no faith whatsoever in me being able to do any of it myself (to the point that he refused to sign my medical release so I could get a driver's license when I turned 16! ). Having good doctors really make all the difference in how we handle all that gets thrown our way so I was so glad when we finally changed insurance companies and I was able to see an endocrinologist for my care...

Insurance... Glad I have it, but at the same time they make me cranky. You know, I had a pediatrician when I was first diagnosed and for a few years after. I honeslty don't think they knew what they were doing. Wasn't until I was a little older and wiser that I started seeing an Endocrinologist. That was the best move I ever made. I had been seeing the same Dr. for about 13 years when my insurance changed about 3 years ago. That is when I had to switch Dr's. I found one here in MN at the International Diabetes Center. I thought, what better place to go! That whole drivers license thing. My Dr. signs it yearly. They are great. You send it in and they will sign it and sign it to the DMV for me. And yes, you are right. Having a good Dr. makes all the difference in the world!!!!!

 

[seashell724]

Hi there!
One of my brothers has type 1. He was diagnosed when he was 2 years old and is now 20. He is very brave with it. Although what really bothers me is that his fingers and toes don't even feel the blood tests any more because he has done, well, probably really a million.

Insurance, insurance. You know-I live in Canada. I cannot imagine living in the U.S. and NOT having insurance. Here I do get benefits at work that cover extras but we would probably be living on the street to pay for all of our families meds. in the U.S. I feel for you guys about that.

 

[JoJo's Mom]

Hi there!
One of my brothers has type 1. He was diagnosed when he was 2 years old and is now 20. He is very brave with it. Although what really bothers me is that his fingers and toes don't even feel the blood tests any more because he has done, well, probably really a million.

Insurance, insurance. You know-I live in Canada. I cannot imagine living in the U.S. and NOT having insurance. Here I do get benefits at work that cover extras but we would probably be living on the street to pay for all of our families meds. in the U.S. I feel for you guys about that.

Hi Seashell!

I bet a million is right! It's never ending. But, it has to be done. I don't even think about it anymore. It's such a habit and routine. I don't have any lost feeling in my fingers. However, when I was a kid I would use my legs for injections all the time. I can't use them anymore. They have what looks like bruises on top. Permanent ones. They don't hurt though. I also have lost a little feeling there. It's weird. So, I stay away from using my legs.

I hate insurance companies. I sometimes feel they don't care about the client/patient and all they care about is $$$.

I got my packet in the mail yesterday for the JDRF walk in Jan. I have done this for several years (except last year, we weren't able to attend). I feel weird when I am there though, it's all about the kids. Which, I understand. But, Juvinelle Diabetes is also Type 1. Not all Type 1 Diabetics are children. So, it is just weird. They focus on children and nothing on adults. But, I suppose the money raised and the research will benefit both kids and adults. I get so emotional when we do this. It is held at the Mall of America. I cry every year. It sucks that I have to live it, let alone all these young kids. Even though, I once was that young kid. Someday......there will be a cure. Might not be in my lifetime, but someday there will be. I have faith in that.

 

[seashell724]

Hi Brenda,
When is this held in the MOA? My cousins live 2 miles away from there and I often visit them. Up here we have fundraising where you raise money and then go away somewhere (like Disney!) for a marathon. Have you ever done this or do you have it there? I have been thinking about doing it (even though I am NOT a runner).

 

[JoJo's Mom]

I believe the walk is on Jan. 12th. We raise money before the walk and then on the 12th the mall will be open early (not the stores) for the people who raised money. We then walk the mall for like 1 hr. At the end of the walk they try to have an estimate of how much was raised. So, with this fundraiser, there is no marathon!! (thank goodness, I wouldn't make it!) I think one reason it is so short and the walking time is short, is because there are so many children there. We can sign up on-line and those wishing to donate can do it on-line or give me a check in person. It's really all about the fundraising and not necessarily about the walk. Like I said before, I get so emotional. I suppose though, that could be for any type of fundraiser.

Do your cousins live in Bloomington? I live approx. 30 min. away.