Thoughts/Fears/Questions/etc

Newly Diagnosed
21

My daughter went through this and I have to tell you there are some really ignorant people out there.  She even had a teacher from school tell her, that children who get diabetes are because they eat too much sugar.  My response for Samantha was to tell that teacher she was an idiot and did not know what she was talking about.  The nerve of someone making it sound like it was her fault!!  There is absolutely nothing you could have done or not done to prevent getting type 1.  Alot of people don’t understand the difference between type 1 and type 2. 

Samantha is very private about her diabetes.  She adjusted extremely well also, and was recommended for the pump four months into it, but when the time came, the presentation of how to use the infusion set scared her.  So we waited until she had it for about 8 months. 

Type 1 diabetes is an autoimmune disease that occurs when the insulin-producing beta cells within the pancreas are gradually destroyed and eventually fail to produce insulin.  It is not controlled by diet, weight or exercise.  While these things help and are good for you regardless, your pancreas cells basically attacked each other and no longer work to produce insulin.  It will not work again. 

Did you have any other autoimmune issues?  Like allergies, asthma alot of viral infections?  How old are you?  How old was your father when he was diagnosed?  Im sure he is amazed at the changes since he was first diagnosed.

We are still learning too, so I appreciate you asking and sharing your story with us.

Victoria

 

22

Hey Katelyn,

Thought I would check on you, see how you are feeling?

Victoria

23

Hi everyone. My name is Matt, and i was diagnosed about 4 months ago. When i was surfing the web a couple of days ago I discovered this site. It's good to know that there is an online community of people who are willing to help and talk about their diabetes. One of my biggest fears is/was going low at work. I am a lifeguard at a pool, and its kind of hard to carry candy or glucose tablets around when your in and out of the water all day long. Luckily, most of the people i work with are understanding, and when i ultimately did go low while on stand, someone was quick and willing to rotate me off so i could get to some lifesavers and and snack. While it is good to know that my coworkers are willing to help, id rather not be a burden on them. What do other people do when they go low while working?

24

[quote user="Katelyn Bailey"]

How old is your daughter? Does she like the pump?

My parents think i should get it after my honeymoon phase (i can't remember if that's the exact name of it)

would you recomend  it?

[/quote]

Hi Katelyn,

What are the reasons for waiting until after honeymoon, if you don't mind me asking?  I'm still in my honeymoon and trying to get on a pump asap .... I figure it will help me get better blood glucose control, which can help extend my honeymoon (a good thing).

BP

 

 

25

Hi Matt,

I often go low while I am working because I am a pet sitter and I walk dogs a lot. so for my job I just make sure I have some glucose tabs and a snack or two with me at all times in my car or purse to be prepared for lows.  its really annoying if I go low while I am working because then I have to eat the glucose tabs and wait 10-15 minutes for my blood sugar to go back up so I can drive again.

-Vered

26

hey guys,

I'm maggie, I was diagnosed 2 months ago and i'm on the shots and I'm starting school monday. I've never been to school with diabetes, so i'm a little worried on how to give myself shots at school. any suggestions?

27

Your parents need to go to the school and complete a 504 form.  Because you have diabetes you have certain things you are allowed to do, like snacks in class, water, unlimited bathroom, testing your bs before big tests.  It's important to test your bs before like EOG or important test like that, high or low bs can severely effect your focus.  I would go to the office and take your bs and insulin before you go to lunch and then before you get on the bus, if you ride the bus.  YOU DO NOT WANT YOUR BS TO DROP 30 MINUTES FROM HOME! Make sure you always have snacks and learn how your body feels. It may take a while but you will learn how your body starts to feel when your bs is getting high and low.  My daughter's lips turn gray and she gets real pale when her bs drops and when its high she talks like million mile a minute.

When you go to open house or make an appointment for your parents to talk with the school nurse to get the right forms filled out.  I hope this helps.

28

Durning the honeymoon phase your body is still producing insulin and a pump has a consistant setting that will cause your bs to drop very low.  Especially at night.  Besides they want to be sure you know how to do it manually in case you need to agian for some reason.

My daughter got her about 8 months after she was diagnosed.

29

Thank you so much! that helped a lot! my parents filled out the forms last week! I'm a little nervous but i'm sure it will be fine, thank you so much for your help!

30

I hope so.  After a week or so it will be like you've done it forever, just dont forget to do it.  Samantha would get so used to it that if they changed the routine and did something else right before lunch she would forget.  But once you are able to get the pump if you choose to...you can just carry your test strips and finger princker in your purse, check it pretty much anywhere and deliver your insulin for food any where.

FYI - I know it may be a while before you get the pump but it has helped a great deal keeping bs under control.

Anytime...

31

yeah that will be nice! I want the pump! I hear it lowers your a1c perfectly!!

32

Hey I'm Audra. I was diagnosed almost three weeks ago and just started my honeymoon phase a few days ago. I'm wondering how soon you can get a pump? I was told 6-8 months, but I would love to get it sooner. With college, work, and everything else I think a pump would make things easier.

33

[quote user="audramckell"]

Hey I'm Audra. I was diagnosed almost three weeks ago and just started my honeymoon phase a few days ago. I'm wondering how soon you can get a pump? I was told 6-8 months, but I would love to get it sooner. With college, work, and everything else I think a pump would make things easier.

[/quote]

Hi Audra,

Welcome!  I was diagnosed exactly one year ago.  My understanding is you can get a pump as soon as you feel ready, though you'll need your doctor's prescription etc. to get insurance to cover it (if you are lucky enough to have insurance, that is). Most people who use one feel that a pump makes their management easier.

My first suggestion, though, is to look into enrolling in a clinical trial. There are numerous trials out there that work with newly diagnosed Type I diabetics as part of the effort to find a cure. Most of them that I have seen require that you enroll very soon after diagnosis (e.g., within 6 weeks), because at this point your pancreas is probably still producing some insulin. Many of these studies are focused on preserving the insulin production of your pancreas, thereby prolonging your honeymoon for as long as possible.

I am in the thymoglobulin study at UCSF, partially funded by JDRF. You can see other JDRF trials and links to other sites here:  http://www.jdrf.org/index.cfm?page_id=101984

A big site is Trial Net:  http://www.diabetestrialnet.org/index.htm

Not sure where you live, but if near northern California the diabetes center at UCSF is highly regarded; even if you just want to ask questions about programs in your area: http://www.diabetes.ucsf.edu/index.php?section_id=473&

If you have any questions, don't hesitate to respond or even send me a message directly. I'd be more than happy to share with you my experiences doing a clinical trial.  The way I look at it, a clinical trial may or may not help you directly, but it definitely contributes to the cause for all those who follow us.

BP

 

34

[quote user="Bryan Pon"]

[quote user="audramckell"]

Hey I'm Audra. I was diagnosed almost three weeks ago and just started my honeymoon phase a few days ago. I'm wondering how soon you can get a pump? I was told 6-8 months, but I would love to get it sooner. With college, work, and everything else I think a pump would make things easier.

[/quote]

Hi Audra,

Welcome!  I was diagnosed exactly one year ago.  My understanding is you can get a pump as soon as you feel ready, though you'll need your doctor's prescription etc. to get insurance to cover it (if you are lucky enough to have insurance, that is). Most people who use one feel that a pump makes their management easier.

My first suggestion, though, is to look into enrolling in a clinical trial. There are numerous trials out there that work with newly diagnosed Type I diabetics as part of the effort to find a cure. Most of them that I have seen require that you enroll very soon after diagnosis (e.g., within 6 weeks), because at this point your pancreas is probably still producing some insulin. Many of these studies are focused on preserving the insulin production of your pancreas, thereby prolonging your honeymoon for as long as possible.

I am in the thymoglobulin study at UCSF, partially funded by JDRF. You can see other JDRF trials and links to other sites here:  http://www.jdrf.org/index.cfm?page_id=101984

A big site is Trial Net:  http://www.diabetestrialnet.org/index.htm

Not sure where you live, but if near northern California the diabetes center at UCSF is highly regarded; even if you just want to ask questions about programs in your area: http://www.diabetes.ucsf.edu/index.php?section_id=473&

If you have any questions, don't hesitate to respond or even send me a message directly. I'd be more than happy to share with you my experiences doing a clinical trial.  The way I look at it, a clinical trial may or may not help you directly, but it definitely contributes to the cause for all those who follow us.

BP

 

[/quote]

Thank you Bryan! I am definitely going to look into that. I will probably be getting back to you and asking a lot of questions. My first question though is what does it take to do a clinical trial? I mean time wise and effort wise. I am very busy this semester and if it takes a lot of keeping track of things or traveling to the doctor or whatever, I might not have the time. Any insights you could give me would be awesome!

35

[quote user="audramckell"]

Thank you Bryan! I am definitely going to look into that. I will probably be getting back to you and asking a lot of questions. My first question though is what does it take to do a clinical trial? I mean time wise and effort wise. I am very busy this semester and if it takes a lot of keeping track of things or traveling to the doctor or whatever, I might not have the time. Any insights you could give me would be awesome!

[/quote]

 

Audra, it all depends on the trial. The basic format of the clinical trials I have seen are pretty similar: You go into the hospital, get some kind of therapy, then the team monitors you for a couple number of years to see what kind of effects the therapy might have had.

For me, I went into the hospital for a week while they dripped the study drug/placebo through an IV. After that I just have regular checkups where I go in and get blood tests, talk to the diabetes management team (free expert consultation!), and give them copies of my insulin logs. I know that some of the anti-CD3 studies out there require you to be in the hospital for 2 weeks while they drip the drug through the IV. But every trial will likely be different.

One thing that will probably be very consistent is that the study team is going to want to see your daily logs of all the insulin injections and BG readings. This would be very easy to provide if you're on a pump, since the software tracks all of this for you. I'm still on shots (can't wait to get on a pump!)  but I keep really complete logs that also show carbs and exercise ...the team tells me I'm kind of a nut with how detailed I track everything but it's important to me.

The study pays me for all my travel to/from the hospital, and I get paid $100 for every time I have to do a fasting test. They call this a "mixed-meal tolerance test" and basically you stop eating at 10 p.m. the night before, go in first thing in the morning, and they start checking your BG levels. Once they get a baseline on your BG, they give you a bunch of carbs (my team has me drink one of those vitamin-fortified shakes for elderly people, similar to Ensure) and then they keep testing you every 15 minutes or so for the next few hours. Basically they are testing for c-peptides, which indicate how much of your own insulin you are still making. Anyway I don't think the test is a big deal so I'm surprised they pay for it but I don't turn down the money. :)

 

BP

 

 

 

36

I do have a question, I was just curious on how long it took for the doctors to find the right dose of insulin. My first high blood sugar reading was in February, and it just feels like it is taking forever. I am also a little scared because I don't know what low blood sugar feels like and I am not sure that I would recognize it. How is it for you guys? I know the clinical, but I would rather know personal accounts.

37

[quote user="Becks21"]

I do have a question, I was just curious on how long it took for the doctors to find the right dose of insulin. My first high blood sugar reading was in February, and it just feels like it is taking forever. I am also a little scared because I don't know what low blood sugar feels like and I am not sure that I would recognize it. How is it for you guys? I know the clinical, but I would rather know personal accounts.

[/quote]

 

I don't know about the insulin thing... because I'm in my honeymoon right now, so I'm mostly low. The first time I was low, my brain kinda felt like it was spinning... that's the only way I can describe it. And I was super shaky and sweating like crazy. I just didn't feel good. Then, my mom was like you look really pale and I told her I didn't feel good. I think you'll know the first time you're low cause your body is so not used to it. The interesting thing is that low is a relative term. My first low was at like 150, but I'd been up in the 500s so my body thought I was low.

38

I have a granson who was doagnosed in June with type !.  he is on a honeymoon now.  is that when the pancreas is still producing some insulin?  His sugar is still not regulated for the most part.  I guess i am confused.  Can someone give me an explanation to all this.  he can't tell when his sugar is somewhat low.  I don't think he can understand it at this time.

39

Hey, Uhmm... I was diagnosed in late march and i was in the hospital for about a week and a half i started out in the PICU.. then i gradually moved to the ICU. When i was diagnosed my sugar was at about 450 or so. and I had lost about 20-30 pounds because i was soo dehidrated. I was in the Hospital during my entire spring break. I turned 16 in Feburary soo I'm a junior in high school. I didnt really know how to deal with this. I still don't. It's soo aggravating and frustrating. I still can't really believe that i have it. I feel like no one understands.. I really just want it to go away. It scares me when people say that they know people that have died from this. I dont really know what else to say.. soo... i guess leave comments or whatever on here..

thanks.

 

 

~Shannon

40

Shannon, my son was diagnosed last Feb. I know how you feel about just wanting it to go away! We do too! But until they find a cure, the best thing you can do is take good care of yourself! You cant dwell on what others tell you about diabetes,every case is different. My brother and sister also have diabetes ,my sister was diagnosed at 16 and she is now 49 and doing well! I hope you have a parent that you are close to or a good friend who will just listen to you when your having a hard day! I know its hard to believe this but it does get easier with time-as we are finding out. My son has good and bad days and it seems like we are always adjusting his doses; it is a tough thing to deal with but try and focus on the good days and taking care of yourself (like everyone should!) It can be managed and you can have a very happy, normal life!

Feel free to contact me anytime!

 

csdoornbos@gmail.com

 

 

-Sonya