Back from the hospital

Type 1 and LADA New to Type 1 Diabetes
1

I was diagnosed with T1D in January. Right after diagnosis I developed a Kidney infection and spent 10 days in the hospital. On March 1 (my birthday) I had what I thought was an UTI but when my temperature spiked to 104 I feared the worst. The doctor sent me back to the hospital, diagnosed with another kidney infection. I endured another 10 days on IV antibiotics with all the other unpleasantness that goes along with it.

The doctor told me that since I have never had any UTI's or kidney problems prior to T1D diagnosis, they most likely is a connection. My future seems grim, diabetes has ruined my health and probably not to long before it takes my life. I'm so depressed I feel like just quitting everything and let nature take its course. I've never been a quitter before but diabetes wins. As much as I didn't want to do it, I'm going to ask my Mom to send me to Honolulu to live with my grandparents. They can take care of me or get a nurse to do it.

2

i don't have diabetes, so maybe i should be silent. but i just want to tell you, don't give up. people go through hard times and get through it- you can too. we are all pulling for you. people here with decades of experience and decades of going through hard times are here for you.whatever makes you happy- try to focus on it like a laser. keep writing about your experiences. unfortunately, there will be other young people getting diabetes at your age and younger, and in the future it just might help them to read your words to see how you got through it, even during the lowest of the low times. sometimes you have to distract yourself from hard times. when my mother was in a displaced person's camp for war refugees, the camp was sent all kinds of different books, which she read to put herself in another world. my mom must have been thinking of that when she sent my nephew science fiction books when he was in jail for 3 years. my thoughts are with you.

3

Madison,

Diabetes is not going to ruin your life, even if it may feel like it now.
You are still in the early stages of learning about diabetes and how to manage it. But certainly it is manageable.

It is ok to be upset, but certainly not to give up.

Sweetheart, I am old enough to call you that, I wish I could give you a big hug. I know from your posts that you don't have a huge amount of support from your family. Essentially thrown in the deep end and trying to find your way. But you are a strong person and you will learn about this and get through it.

Have you read about the stages of grief? You are certainly grieving now about the diagnosis and management.

One of the oldest people with diabetes is Dr. Richard Bernstein. HE is 80 now (and still active and working as a Dr, though he was previously an engineer) and was diagnosed with type 1 diabetes when he was 12. He has got a lot of interesting online lectures, starting with this one http://wchildblog.com/2015/01/31/session-1-introduction-dr-bernsteins-diabetes-university/

You too will have a lot of potential to help others by what you learn though this experience.

4

You only need to hang in there for 5 more years. Do your best to control it... because there's lots of research around the world for a cure. It's no longer a question of if... rather how soon and which cure will be better. I had Type 1 Diabetes for 26 years now with bad blood sugar control and no complications. I find it very strange how some people are affected with complications more than others.

5

Diabetes is a big big problem I got at age 15. I should have been relieved of all other concerns for the first few years. Dropping out might be the right thing. When they transplant a pancreas it is only with a kidney transplant being also needed. You know though the bionic pancreas will soon be for sale and the new drugs are super exciting. When things change the way my body responds to insulin I have to drop out until I ger used to it. That occurred when I started taking Invokana. Diabetics fail at things get up and try again or give up and find something else to do.

6

You are having some pretty normal feelings right now that every newly diagnosed person goes through. I am 8 months out from diagnosis and STILL feel that life is awfully dang grim sometimes. But…more and more, as my control improves, I am starting to feel like I am getting my life back. You will, too, just be patient with yourself. And know that you have a lot of support here.

7

I think many of us go through very hard personal times after our diagnosis. After I was diagnosed I became obsessed with my own death and mortality. My father had died at a young age and I thought I was surely going to follow and I had but a few short years left. But in hindsight I have a better view of what I was going through. In a way I had died upon my diagnosis. My old life was gone. It wasn't just that I could get complications and die young it was that many of the things in my old life were just gone. I think I went through the five stages of grief defined by Elisabeth Kübler-Ross. She developed these as a model of how people deal with grieving, particular about the loss of a loved one. Those stages are D'Nial, Anger, Bargaining, Depression and Acceptance. The stages can occur in any sequence and it is now thought that this is our way of working through and integrating new information which conflicts with previous information. This is exactly what we go through when diagnosed, we have to make major revisions of our world view. Being diagnosed is an earth shattering event for many of us.

But understand, this different world is not one which condemns you to complications, early death and takes away your ability to have a full happy healthy life. It is just different. But it will take you some time to come to that realization. It may even take some years before it becomes clear.

I think you have done a very brave thing to talk about your feelings. This actually is the first step to feeling better. I'd like you to first accept some faith in yourself even if you feel like it is unwarranted. Every time you go in the bathroom tell yourself "I can do this." Next, I'd like to ask you to go to your parents and ask them to help set yourself up with a counselor. This is for you, not your parents, not your doctors or anybody else. This is for you to tell your counselor how you are feeling and try to work through things.

You have to believe, you are strong. It is perfectly normal to have these feelings. But you can do things to work through them and get better. I believe in you.

8

Hi Madison,

I want to repeat Brian's very good suggestion to find a counselor to talk to. Diabetes is tough and you've had two rounds of hospitalization. I'd worry more about you if you weren't down right now. BUT getting your blood sugar under control really helps control the bacteria that are now feasting on the extra glucose. It will take time, it will take mindfulness on your part but many, many people have done it. If you think you need more attention and that going to Honolulu will help - by all means take a break and stay with your grandparents a while until you get the hang of it. Giving up is not the answer - it isn't even easy. Be kind to yourself and give it your best shot.

Take care,

maurie

9

As Maurie says, keeping BG under control helps tremendously with the UTI problem.

And we're not talking super hard, tight control... Keep it under 150-160, and you won't be spilling much, if any glucose into your urine.

Finally, you've spoken several times about the possibility of coming to Hawaii and staying with your grandparents, because you could receive better treatment in the US, and more attentive care from your grands.

At 15, a disruption like this is really, really hard. You lose all your friends, especially, and have to be the "new kid" at a new school.

Still, kids face this all the time. Families move. It is something I can assure you is scary and depressing up-front, but within a month or two is in the rear-view mirror as you've gained new friends and exciting new experiences.

All that was said for one reason: Given you situation, moving to the US really might be the best solution for you. In addition to having better health personnel options overall, you would also have access to a CGM and maybe even Afrezza as another way to control your diabetes (not yet approved for pediatric use, but likely will be soon, and probably before it gets to Japan at all).

I'm not pushing these solutions, just seeing from your posts that, ironically, some of the treatment flexibility and tools that would be available to you in the US might make moving to Hawaii a very happy move, after the initial blues have passed from saying goodbye to your old friends.

10

When I wrote that I had just gone through a bad day at school. I had dropped myself out of dancing class. I had to do it because I was getting behind on my school work and was worried about my grades. My parents had called to tell me they wouldn't be home that night and arranged for a lady to stay with me. It was someone who I didn't like very much. I was so depressed that night I remember searching the web to find out what injecting 50 units would do. I never want to have those thoughts again.

11

I must disagree with you, diabetes has already ruined my life and it's only been 2 months. It's hard to believe that Dr Bernstein has suffered through 68 years of diabetes. It's even harder to understand why he would want to do it.

12

If I could believe there would be a cure, maybe I could shake this dark mood.

13

i love dance! just informally. what kind of dance do you study? you can go back to it later after things settle down. i'm a teacher and sometimes we have parties in my class before vacation where i put something like 'just dance' on the smartboard and me and some of the students dance around and have lots of fun (after taping paper over the door window).

14

WOT but I read in his bio that he was an "organizational engineer" rather than a nuts and bolts or wires or whatever kind of engineer. Not exactly the same thing but, well, sort of different. I still admire his approach and persistence but it sort of mixed it up a bit...

15

Dr Bernstein went to med school in his 40's just so he could have more credibility in helping people. I think he, although somewhat eccentric, is very passionate in helping pwd's. Not all of his advice is for everyone, but, I say "take what you need and leave the rest".

16

Really great responses here, and I agree that you were very brave to have voiced your concerns.
Two episodes in the hospital can really bring you down. Have you asked the doc if there was anything else, in addition to the db, that may have caused or added to the infection?
I have had db for 42 years. Yes, there have been some hard parts, but I still lead an active and meaningful life.
Please please please see if there is a professional mental health person you can talk with. You should not have to go through this alone.
For the newly diagnosed, db is an enormous change. But it WILL get better. Just try to take things one day at a time.

17

Keep at it, kiddo. This is gonna take time. These life changing experience take time and are painful, but they shape your identity down the road. Some day you might appreciate the experience because you will see how important it was in making you the incredible person that you are, and will be. You gotta tough it out. We all know you can do it, even if your not sure that you can sometimes.

Consider staying on in dance, if its something you love, maybe do even more of it. You need to feel good and relieve stress. I quit extreme skiing, this year, due to concerns about diabetes and epillepsy. It made me very sad, but it was the right choice for me because the type of exercise I did, put my life at risk, if I wasn't able to manage my illnesses. It took me months to figure out. When I took exercise out of the equation, my numbers were much more predictable. Now, I will understand better, the effects of exercise when I return to skiing. I will not be afraid.

18
WOT

acidrock23, I usually try not to veer off on a tangent about acronyms I can't parse. But ... what the heck. WOT? All I can seem to find is "World Of Tanks", "Wide Open Throttle", "Wall Of Text", "Wheel Of Time", or a (silly to me) way to shorten "What". None of which seem to fit the rest of your sentence in any way.

Typo? For what?

madison I would try to talk at you, but my gut feeling is that you have gone to that deep, dark place. The one where you already know everything about how the world in general and yourself in particular work.

So, you see no point in listening to others. This is reasonable in the context of its own tightly wrapped mistaken logic. After you have found absolute truth, why bother?

There is a very frustrating irony here for those of us outside you. If you were to stick around, I expect you would find relatively quickly that the unspeakable certainty one can have in their youth that they "know" something with total & complete & indisputable confidence would break. It does not age well except possibly for truly committed narcissists who can never look beyond themselves.

No.

I didn't believe it either when I was younger. I suspect that's true of most people. And that's the irony. The only thing which might show you you're not as insightful as you currently believe you are is time. And experience.

I hope you can work yourself past this infuriating depression. It truly saddens me, in ways I don't think you can appreciate yet, to realize that you might not. But at this distance we're all just pushing on a string trying to move you. I have my own truths which I know, But I seem to lack words to express them.

-iJohn

19

This will all make much more sense in a couple years. Don't put too much pressure on yourself. Your health is not going to be destroyed, even if the numbers are bad. The numbers will be bad during periods of time. Your in a particularly goofy period because your newly diagnosed, your still growing, you might be honeymooning, etc. It will get easier. Maybe you could start the first diabetes meetup in Japan. I didkn't see any when I searched online. When I was a kid, about 16, me and a bunch of the neighbor kids got EMT training at school. That helped a lot of us feel much more confident with each other during emergencies, like bad car accidents or medical emergencies. We kinda liked emergencies because it gave us the opportunity to do what we were trained to do. We liked to help. They used to send groups of us to work the race tracks and we responded when there were bad car accidents. I still do some of that and I'm better at it because I'm diabetic. I know what it feels like to have low blood sugar and not be able to think clearly. It helps me understand what its like for our patients. Maybe some day, you will want to be a doctor, or a therapist who specializes in chronic illness. The more u struggle, the more diabetes will build you into whatever it is that you are supposed to be.

20

Hey Madison...
Being a teen is one of the roughest times. Most of us wouldn't volunteer to be your age again, if we were paid lots of money and could do so!!! It's all kinds of hard. The brain of an adult, without the ability to make most of the choices independently.

I.V.'s are not fun, but would have sucked more without them. Had several friends been through the kidney stones. Could be worse you could be a GUY. Now that's ouch big time. Now let's share you & I...

Diabetes will not take your life. Not unless you quit. Ever have kids at school who annoy you? People you just can't stand? You can pretend all you want, but most you have to work with on projects, or P.E. you don't have to love them emotionally, you just have to cope with em. Some are not who/what you thought they were at all. Some are, and them you try and avoid. But most are ok, at least enough so you do what you must with them, and keep going. Make sense so far?

Diabetes is like those people madison. And even like your friends too. Friends are people you know all their little secrets and still love them anyway.

Because of diabetes you will take much better care of your body than most. Not insane diets, not wacko fads, but you know what's healthy and what's not. Guys your age eat like great white sharks. It's nuts what they can eat. But the strongest of them would weep like babies in meltdown mode doing what you've learned to do these last few months. Some would faint dead away, big tough guys..m yeah, NOT. You are about as weak and fragile as an atom bomb. You believe you are weak, lol you are not.

There are lots of people your age who have all kinds of problems you did not know about. Eating disorders, alcoholic parents, std's, baaaad relationships ...its a pretty long list. You know and can do things about diabetes. You are smart, articulate and damned mature. You're here aren't you madison??

You've got hundreds of brothers, sisters, aunts, uncles here. Every single one of us, ALL of us understand exactly where you are at, we have been there too. Some of us feel exactly like you do now. We get it, because we are you.

Hawaii is gorgeous but won't solve squat. Last I checked diabetics exists there too. And if not, your plane's gonna be filled by a bunch of us ggg. Diabetes is not winning period. If it were you would not be here explaining the issues this expertly kiddo. There are hundreds of us here who would reach through your screen and give you a hug. Some of us would drag your butt outside to do something you love doing and PROVE that you are not dead, neither are we.

You do not need rainbows and kitten diabetes madison, you just need to live, to stay alive. That's not diabetes, that's just life. It's hard to do sometimes.

You want to quit, you gotta get by US, your peers to do it. How long have I been a T1? How long has Richard157? You can't swing a stick around here without hitting
Someone with 20, 30, 40+ years. Women, men... families, lives.

You wanna "quit" get by us first ok?

P.s. btw For a young woman who has "quit", you Write very @5#/_!-;"h[©£{\%¡ well.