I need some help....diagnosed 2 years ago


(joe) #21

@anitanerwen hi Anita, I don’t have to say that not everything you type will be taken the way you intend it to be read. that’s kind of the difference between talking to someone and typing out a thought. I can tell you were upset, anyway, no harm no foul. I hope you continue to share your experiences, strength and hope here at Type One Nation.


(anita) #22

thank you Joe for telling me that. as you know i was very frustrated reading Lillys
note.

thanks for the advi ce

Anita


(P.) #23

Dear Lilly,
Your feisty answer to Anita tells me you are going to be just fine. Try to turn some of that feeling into being self-protective with your T1, if you can. Try to show it you are in charge.

Anyway, I agree with you that people who don’t have T1 don’t have a clue about the disease. I have finally found a nurse educator and a doctor who both have T1. They’ve changed my life because they don’t look at me like I’m just lazy when I tell them what’s been going on with me and diabetes–and they give HELPFUL feedback rather than textbook feedback.

Like you, I didn’t want the disease and didn’t let anyone know I had it. I used syringes so there would be no noticeable attachment, but I’ve had the pump for almost two years and my blood sugars are better than they’ve ever been–way fewer lows. It’s worth learning to use the pump with a T1 nurse educator which can take more than a year, and then diabetes will settle down and let you do the things you want to do.

Wishing you the very best. I just know you will prevail!
CureIt


(t1don) #24

ok don’t worry! we or most of us have been there! first of all, get more into JDRF so you have more of a community around you. get onto a board and begin getting to know us better. you are not alone! also, if you want to be on shots, no worries - I have done this for 38 years. it works. the CGM is the most important part. shots and t1d must come FIRST every single day with small exercise you can handle. don’t fight it. also, prayer is key as you are struggling now. the short periods like you are going through can and do end. don’t worry. make this thing fun by reaching out to the JDRF people in your area. make new friends. it will get better I promise.


(ntrubov) #25

Lily,

First the bad news. No one is “normal”. Don’t worry about it. You never were and you never will be! Why in the world should that even be a problem?

OK, now for the GOOD news. Everyone has SOMETHING. Just because you cannot see it doesn’t mean that they are “normal”. So, consider yourself lucky that you are only diabetic. You aren’t epileptic (yet?). I used to ride (bicycles) with a girl who had epilepsy. She and I would always kid each other that we didn’t have the “other” condition. Maybe I am not diabetic, but still need to inject insulin into my poor old body five or more times a day.

Then, one day about ten years ago I was diagnosed with cancer. Now THAT can be something to worry about. But, shit, I’m still alive (and driving my lovely bride crazy).

OK, my “advice” don’t worry about being diabetic. Something much worse might be in store for you. But if it doesn’t kill you it just MIGHT make you stronger.

I still wonder about all those other people wandering around who seem to be unable to live without breathing air, in and out, all day long. Now THAT seems like a real inconvenience.


(Hb) #26

Hi lily,

I’m in the same boat as you. I was diagnosed within a month of my 29th birthday. I used to love drinking wine, eating whatever I want & this has been a huge adjustment! I’m still learning how to eat. I guess my advice would be to focus on low carb. I know they say to dose whatever you eat but that crashes me out About 1.5-2 hrs after I eat. It’s just way easier to forget the potatoes, corn, starchy stuff… Dark chocolate has been very forgiving on me. Obviously- my big thing is food- ha! I’m sorry you are having such a hard time with this. I get frustrated when people ask me “not type 2?” I wish they’d change the name of this diabetes altogether! I did read some promising research that shows low carb/ slight ketones resulted from may actually reverse diabetic retinopathy. More reason to try low carb :). Also, I read somewhere depression is more prevalent in type 1’s (ya think? Lol) if you can get the depression in check, your motivation may soon follow! I hope it gets easier for you!


(Lilly) #27

Thank you so much I will try my best I have a doctors appointment the first of January so I’m going to talk with my doctor. And yes food is my main issue too as well as the Pepsi but I’ve gotten better about just drinking one and some days none at all.


(Dennis) #28

I hear you, Lilly. I’m 39, going on 40. I was first diagnosed over 2-years ago by my PCP as a T2. It was a bit of a shock and disappointment for me. I didn’t fit the profile of a T2, I was regularly active. I ate balanced, I ran marathons for crying out loud. How did this happen? I took control and found myself an endo. My metformin was upped. I was given some non-insulin injection that made me sick. I was switched to another type of injection, that was upped. My numbers improved…somewhat. The practice where my endo was beginning to unravel. My dailies were beginning to increase. I continued on with the non-insulin, added long lasting insulin. Turns out I’m not a T2, but LADA. I added meal time insulin. My dailies improved. Recently, I was taken off my my T2 medications and my dailies have been all over the place. I finally thought I was getting the hang of it all. I frequently get depressed over it; because just when I think I’m doing all right, making good choices, when I check my numbers post meal I see absurd highs, I think to myself…what did I eat that did this? I didn’t cheat.

Food for me the big thing for me. I love food. I love to eat. I do the shopping and make the meals in the house. I used to looooooove Coke (Red) and Mexican Coke. Thankfully, though, I was able to easily switch to Diet DrPepper. I cut out other things from my diet altogether. I’m still having trouble with some things. On my weekends off from work, I enjoy having ice cream. It kicks me in the teeth eating, though.

I’m still relatively new to insulin, but feel like I take a lot, if that’s even possible.

But keep up the good fight, yo! Vent, rant, cry. Get it out!! I saw some really great responses


(Charles) #29

Lilly,

I too know how you feel. At first you were angry, now denial and soon will come acceptance. I was diagnosed 4 and a half yrs ago. I’m loser but this is all part of it. We all go through it. I too want to deny it, but it just doesn’t work. It only makes you sicker. It really sucks and none of the drs tell you this crap is gonna happen. They just hand you this load of stuff and say here ya go!

The best thing I’ve done is to try and make a routine of treatment. I use the G 5 monitor and it works pretty darn well. It can be used with the I phone so it’s not like the pump. You take the shots and if your out just go to bathroom nobody’s the wiser. However I got over that real quick. I said screw it you gonna be around me I’m diabetic and so live with it.
But I write down in a log to keep track of stuff cause I forget if I did it or not. It has affected my memory a lot. Stuff I used to know I don’t. So now I’m relearning how to do a sh** load of stuff, it pisses me off to the nth degree. It’s very frustrating! I cannot stress that enough. But part of it is within you. You gotta pull by the bootstraps and just do it. No we don’t wanna, but we gotta! Like it or don’t thats the way it is.
Trust me my situation is very much the same as yours, nobody had the disease around me, I knew nothing about it then. Nobody to talk to, yada,yada…
My wife still doesn’t understand. She goes to every appt with me. I lost vision 6 mons after diagnosis. Under treatment, but I still shouldn’t drive regularly or by my self too much yet.
My animals listen but they suck at conversation. Just wag tails and no words of comfort, but they sure can tell me hey I gotta pee!

But in the long run, the best thing I can say is a C G M was a life saver for me. I could see where I’m at every 5 min and what happens when I eat or drink this or that. Get into a routine and after 6 months or so you’ll feel better and if you continue things will start to look up. Unfortunately we can’t just go get a shot or some pills and this s*** goes away. God how I wish it did!

The hardest part for me is my DAD. Used be chemist and thinks just cause I do my treatments I’m totally normal… so I S*** from him about why I don’t do this or that. Why don’t I do this for treatment or why don’t I just take shot for this or that. He thinks that cause I got meds that I’m normal. And I cant get him to understand about how that’s not all this crap does. Hell he asks me every week your eyes better yet? When you gonna start driving again and get a job.
I have to tell him that I went blind and this doesn’t just go away, ask me in 6 months or a year from now and I might have an answer. He still refuses to believe that it might come back(the really being blind part) yet.
But I’m with ya all the way, I do understand what your thinking and feeling. The one thing I do know is that until you can kinda control the beast, it will run your life no matter what. Even if you control it it may still run your life to a certain extent. I just got the attitude of f*** it, this s*** is not gonna run me. Once I got that, stuff got better. Not great, just better.

Good luck, hope it helps.


(Lilly) #30

So y’all I’m super excited I’ve been trying to do better and this morning my sugar was on 164 when I woke up which I haven’t seen the 100s in a while when I wake up so I just wanted to shout it out lol


(joe) #31

That is really great Lilly!! Keep up the great work


(Steven) #32

Congrats. I’m sure you feel better, mentally and physically. You can do it!


(Charles) #33

Lilly,
That’s great! To borrow a cliche, one day at a time. Each day you can get things a little better. It takes time to get to where you wanna be.
So set a goal. Put it on your calendar. Set it at least 3 weeks out. Every morning write your wake up number down.Now you gotta due the work to get there. Don’t forget that it might go wonky a few days. But that’s ok! Just know that your working it out. The body responds slowly your other organs are trying to do their job to so signals get screwed up and well ya get some funky numbers sometime. One day at a time! One day at a time! Slowly but surely you will get there.

After the three weeks of keeping track. Look at the numbers. You may see a pattern develope, maybe not! Keep doing this for at least 3 more times of three week goals. That will be a total of 16 weeks. You should be seeing your endo somewhere soon around/ during this time frame. Once you see dr. Write down A1C when they call. Now change your goal length to 4 weeks.
Keep working it day by day! By next dr appt you should see a difference. If you do Awesome!!
After you have all this stuff on the calendar you should see a pattern come up of some sort. That will tell you to kinda focus on that period of time. Now I’m not a woman so I don’t have to worry about cycles, but you do. See if that affects things! It may make things do some crazy stuff. I know it does to my daughter. She’s “ normal” ( whatever that means). LOL.
But the point is to find out times that things go crazy or not your normal big levels. All the numbers will mean something, you just gotta look at it like a big puzzle. How does it fit into the big picture? What’s happening around that “piece” of the puzzle? How does it fit in? Sometimes you get an answer, sometimes you don’t!
But over time things get a lot better. On day one my endo said look being diabetic takes a lot of hard work. It’s frustrating and demoralizing. But if you set a program up and try to follow it. Overall you will succeed.
I had no idea what he was talking about then. I do now! I promise this if you ty it it will help. It’s not perfect, but it helps!

I hope this helps. It did me! Just want to share how I did it.
Good luck! Work it day by day. If you need me tell me. I’ll help if I can.
Charlie


(Gerrie) #34

Hi Lilly
I have read through every single reply it’s all been good information I too was diagnosed near a birthday two years ago in April…changed my life … I to had no one to talk to about it! I also am thin and find it hard to maintain my weight. I went to an adult type 1 diabetics camp this summer it is in Nj , but people come from all over the US. It was great to be with all ages of people just like me. To hear someone’s glucose monitor go off and everyone looks to see if it’s theirs made me feel normal! I have read several books bright spots and land mines and think like a pancreas these books are very helpful. I’m eating foods now I never thought I would ever eat and they’re actually pretty darn good if you want some recipes message me. While it is a challenge EVERY day I too wish I knew someone who had type 1…my husband is very supportive as my friends…but the camp I went to really helped…some hospitals have support groups also… I take MDI…and because I am thin and not enough real estate for the glucose monitor and a pump, I use the glucose monitor only. It is a life saver and I now have my a1c where it needs to be.
These forums helped me a lot and the internet… the more info you get should make your life a little more normal


(Lilly) #35

I’m always willing to try new recipes that actually taste good lol


(Bethany) #36

Hi Lilly, congratulations on your 160! It’s fantastic when the dang numbers stay where you actually want them to.

I’m sorry you’re having so much trouble with your diabetes right now, but I think most of the other people that answered are right - it’s normal to feel angry, especially early on. I was diagnosed when I was a kid and I remember one night where I just didn’t want to eat even though I was starving because then I’d have to take insulin for dinner when no one else had to. I was furious with my dad because he made me take it anyway. It was more than ten years ago but I remember that anger and just wanting so bad to be normal again.

I hope you’ll take your insulin. I know it sucks, but you really will feel better. And that is what all of us here want for you. And more BGs in the 100’s! (crosses fingers and prays hard)