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


(Lilly) #1

I am 31 almost 32 and I was diagnosed literally one week before my 29th Birthday. It was a slap in the face and I felt like my life was over. Like how can I just now be getting diagnosed?? My whole life is changing in this instance. For the first few months I did good, but then they put me on the pump and I still did ok for a while. Then I got to this point to where I just wanted to be normal and didn’t want people feeling sorry for me or looking at me differently because of my insulin pump so I stopped using it. Then I went to the hospital because my meter said my sugar was over 600 and I’ve had that happen before but this time was different and I felt ten times worse. Well come to find out my kidneys were failing and I was put in the hospital for over a week. You’d think that would open my eyes but it didn’t and I’m still not taking my shots like I should and that was August when that happened. I just get so depressed and hate people treating me different and acting like they know what I’m going through when they either aren’t diabetic or have type 2 and think they are an expert when type one and two are completely different. I just have no one to talk to about this depression and why I just can’t seem to make myself take my shots. Like I want to be normal but I never will be and it’s like if I ignore it it won’t be true, but the fact is it’s getting worse. Just in a little over two years my kidneys have failed I have blood spots behind my eyes I keep losing weight and constantly feel horrible and depressed and my A1C is an 11.9. I’m just overwhelmed and no one in my family is type 1 but me and no one truly knows what I’m going through. I’m sorry to be whining and unloading like this, but my Aunt told me I needed to find a support group so here I am. Does anyone have any advice or anything to help me cope and try to do better so I don’t end up back in the hospital??


(Jill) #2

Lilly -

Everything you are feeling is completely normal. Please don’t hate on yourself, but please do know, you have the power to make yourself healthy. Your post leads me to just wanting to talk for hours about how crappy diabetes is. But also, I am your age, and I’ve had it for 22 years. It is not something that you have to let control your days. I’d talk all day long with you if you’d like, if it would give you the support you need. Posting and putting it all out there is hard, Don’t get deterred by negativity. Message me privately if you’d like to vent more.


(SarahTackett) #3

Hi! I’m 25 and was diagnosed with T1D when I was 20, so I’ve been T1D for about 5 and a half years now. I totally understand how you feel with being diagnosed as an adult - it feels impossible to manage when you’re dumped into this whole new world and no one is there to take care of you or make sure that you’re taking insulin, eating meals, or even getting out of bed in the morning. I felt like I needed an adult, like the kids who are diagnosed with T1D who have a parent helping them.

For the first couple of years after my diagnosis, I took no insulin at all really, and was hospitalized every few months with high blood sugars. I’m not sure if I genuinely just forgot to take insulin, or if part of me just didn’t want to admit that I was different, or that I was being forced to adjust my life around a disease I didn’t deserve.

I think what changed for me is that I met other people with T1D and became instant best friends with them. We’d go out to dinner together and check our blood sugar and everyone would take insulin. It became so normal to me to do that, and for once I didn’t feel different. Then I’d be hanging out with my non-T1D friends or even by myself and it was so normal to me to give myself insulin that I did it out of habit.

It might be helpful to meet other people with T1D in your area that you can hang out with in person. If you’re interested, you can find a JDRF chapter near you, and they might have T1D meet-ups, depending on where you’re located. You can find a chapter here: https://www.jdrf.org/chapters/

I hope things get better for you, and I know they will. Just take it one day at a time, and try to be nice to yourself!


(Lilly) #4

Thank you for your response it literally made me cry because I’ve had those exact same experiences and feelings


(Lilly) #5

Thank you so much I actually replied to you in a private message. Today’s been full of emotions and me crying.


(Dennis J. Dacey, pwD) #6

Hi Lilly @Lilly_Harrison, in some ways I can relate to what you’ve gone through and how you are feeling about being different. In a way I didn’t stand out in school or work because someone would see my pump or glucose meter - those things hadn’t been invented 62 years ago when I was in your place.
Quite basically, I never told anyone at school [I went “away” to high school and college ] so I just ate what everyone else ate and did whatever I wanted to do - no questions asked. The “killer” actually came when I traveled with the college band to another state [where drinking age was 18 - BEER!!!] and didn’t take insulin for a couple of days. Same thing when I dropped out of college and was working - no one knew that I was “diabetic”. Yes, now I’m paying the price.

You and I could sit and talk about this lousy life we’ve been dealt and feel really sorry for ourselves. But I feel that isn’t what you want, and I know that fortunately I’ve gone beyond that point and have learned that the future is in our own hands - I came to that realization after close to 15 years struggling with diabetes and fortunately with support, mostly from my wife, I’ve had a grand and full life; there probably isn’t much I haven’t accomplished.

@sarahtackett posted a link that you can use to find people in similar situations as you find yourself - I challenge you to at least take a look. I know I found a nearby JDRF group that offers me inspiration and more importantly gives me an opportunity to offer my support to others. Keep posting and let us know how you are doing.

As for your eyes, in 1966 I was diagnosed with retinopathy - the name for the condition you have with the “blood spots”. At that time there weren’t any treatments so I volunteered my eyes for a few experiments - now there are several very good treatments for you. I’d be happy to share with you what I know.


(Lilly) #7

Yes please I’d love to know some more info on what I can do for my eyes


(Kennedy) #8

Lily, I have had the same difficulties as you recently. Direct message me if you want and we can talk about what we are going through.


(joe) #9

@Lilly_Harrison Hi Lilly,

So in an effort to not have diabetes anymore - at first I wished for the old days, then wished they would hurry the ***** up with that cure I was promised, then I just did the minimum to stay alive. I couldn’t bear the thought of a pump… or testing blood sugar in public… hell you might as well put a flashing yellow light on my head and a big sign that read “FREAK SHOW” no way, I preferred shots because you cant see it when I am out. it’s easier to hide.

In an effort to not focus on myself, I sought out chaos and drama and filled my life with it, To me it was just easier to not look at me when everything around me was so screwed up and crazy. It was everywhere - my relationships, my work, everywhere.
so then about 19 more years of that and then my life fell apart.

a couple things I learned, you can take it or leave it,

  • it’s NEVER too late to make a positive change in your life.
  • I don’t take care of diabetes because some expert told me to, I take care of it because I am worth it, and there’s things in life worth doing, and some experiences so joyful and important, it makes the whole thing worth the mess and the bad parts,
  • I gotta make peace with me first. no one in the world was tougher on me than me, and when I figured out that I was angry at myself for the shameful failure of getting sick, and that this wasn’t a cosmic punishment for something I did, things got better

anyway, by denial of diabetes, I was living my life like a demolition derby (a race where you smash your car into other cars until all the cars break). I have retinopathy too, essentially battle scars from being at war with myself. when I put my guns down, the retinopathy stopped getting worse, stabilized, and now it just is what it is. It was a scary day when I went to the retina specialist, scarier even when I went for coag LASER to prevent bleeding, but that’s what it took to keep my vision.

we’ve all had to deal with the grief of losing our good health. This trauma is difficult or impossible by yourself. please reach out. we are on your side.


(Todd) #10

Lily, have you visited Beyond Type 1 (https://community.beyondtype1.org/). We are a community of people very much like you and support each other with advice and rants and jokes and such.
I am very sorry for your feelings. You are different, you are strong and brave. You can do this!


(Barbara) #11

Lilly, I could go on and on but I want you to know you need to be strong and believe in yourself and the heck with others. I was diagnosed back when I was 36 and I had no one either so I began reading everything I could. I was put on insulin right away as the pills were not out very much back in 1981. I am now 73 living healthy with A1C of 6.4 to 6.7 as a rule. When I was diagnosed my daughter was 17 and I knew I wanted to live to see all the changes that would take place in our lives as I was a single parent. I know have 5 grandchildren and 11 great grandchildren and I feel very blessed. I know that the changes that have occurred in diabetic care are fantastic and I thank God for the knowledge given to people to develop things. For instance the Pumps and sensors from various companies. I am a very brittle diabetic so I have to watch it very carefully but I want to live as long as I can be comfortable. So get strong go to your local hospital and talk with someone about some care groups where you can talk with other diabetic people. 14 years ago I went thru open heart surgery and then 11 days later I had brain surgery for a tumor and I refused to let it get me down I was determined to learn how to write and talk and type and add in other words LIVE normal. The heck with what people think just get strong, prayer helps a lot.


(RichardV) #12

I agree with the other replies regarding communication with other type 1 people. preferably near your own age. I have attended the Friends For Life type 1 conference in Orlando. It is held in July of each year. Almost 3000 attended the conference in 2015 when I was there. There are type 1 people of all ages there, usually with their families. An excellent program with speakers is held for adults, and there are separate programs for other age groups. Friendships are made, and members keep in contact after going home. Seeing other diabetics with the same problems can be a very valuable experience! I wish I had that opportunity, but I was diagnosed in 1945. I needed that kind of experience, but I didn’t know any other type 1 people until 2006 when I joined support groups online. I should also mention that there are summer camps for type 1 people, including adults.


(wadawabbit) #13

Hi Lilly. I’m so sorry to about the hard time you’re going through right now. I hope as you start doing more to care for yourself - including getting treatment for your depression - you’ll find that you start feeling better and perhaps some of your complications will become more manageable as well.
I was diagnosed and started on insulin in 1963, and have been pumping for about 20 years now. Some people love the pump but not everyone does. I think people respond to someone’s condition based on how the person presents it. If you (and I’m using the very general “you,” not pointing fingers) show that you’re doing what you need to do to manage it, people will pretty much accept it as a part of your life. So when I pull out my meter to do a test (I do try to be discrete), check my CGM numbers or bolus, or say I need a snack because my numbers are low - people I know pay no more attention to that than they do when I put on lip gloss (although they may all if they can get the snack for me, which can be helpful at times). People who aren’t familiar with the devices may be curious, so it can be a conversation starter or an opportunity for education - and perhaps to clarify misconceptions between Type 2 and Type 2. Since I’ve been diabetic (or “have had diabetes,” if you prefer) for such a long time it’s pretty much integrated into my life. I hope in time you become more comfortable managing yours even with your current complications. I’m not saying it will be easy but hopefully you’ll be more familiar with your body and what you need to do to maximize your health. I’m glad you found this site - I’m sure you’ll find lots of support. Be sure to find a diabetes specialist you can really connect with - hopefully there are enough options under your insurance plan that you can shop around until you find someone who gives you the encouragement an guidance you need. Take care.


(Jose Antonio Lugo (Tony)) #14

I know what you are going through. For yeasts I kept my Dusbetes Type 1 a secret. I’m the oldest of 2 brothers and two sisters. I was in US Marine Corps for 4 years. A year after my discharge my life came to a hault. None of my brothers or sisters have the disease. My parents don’t have it but I guess I was the lucky one in the year 1985. Glucose machine did not exist back then. Anyways Diabetes is awful and than you die. Nothing fair or predictable with Diabetes Type 1. But here is my advice exercise walking is great. Chromium pincolate will help you with your body’s metabolism in getting the insulin to work better. Stay of the heavy sugars for a while. Keep notice of your blood sugars. Humilyn R or Novilyn R work kind of fast and you been thin and new to insulin 1 for every 50 you are over 150. Meaning your blood sugar is 600 , 9 units of R will get you to a safe level. Regular R works also but it will take 2 hours for it to work properly. Drink lots of water when your blood sugar is high. Walk everyday and you are young so maybe excercise in the mornings with shoes on the television. It will be very beneficial and shape you physically to what you want. I know you are thin but a strong thin is better than a weakly thin. Most importantly it takes time and do not get depressed this life no dress rehearsals the only life is the one you have and no it is not fair but who if you complaint will change it ? NO ONE but stay positive and as you get better keep a lookout for low blood sugar episodes. Low blood sugar is also dangerous but immediately dangerous. I hope the best for you. Your diabetic type 1 friend. Tony


(anita) #15

hi,

i almost did not answer you, as you are being a child. i am a juvenile diabetic for 56 years and every day is a challenge. this is what we were given to live with. it could have been cancer but it is not. i have bad days, we must go on and say tomorrow is another day. i think it is all in the attitude one has. i had 3 children with this disease. my brother is very sick with dialysis and removal of one foot and a terrible infections, WHY, because he did not take care of himself. i am so sorry for writing you these mean things, but you are the one who is going to suffer, because you are the cause. you must take better care of yourself and the hell with what other people say. listen to me take better care of yourself or you will land up in the hospital again. a support group is wonderful if you can find one. what city do you live in?

anita


(Lilly) #16

First of all I’m not being a child, second of all you have no clue what I’m going through other than just the diabetes and no it isn’t cancer over lost two of my grandfathers, grandmother, aunt and uncle to cancer so I know all about that nasty disease. And you’re right cancer is worse it’s the hardest thing to watch someone die from, but I did have an adopted cousin die from diabetes at just 19 years old in her home
Alone. So while everyone else has had some of the same issues and fears and depression with this disease and have been very supportive I don’t need your negativity telling me how childish and poor pitiful me I am. Everyone deals with things differently and has other factors weighing in on how they look at their diabetes and why it’s a struggle for them. So with that being said I really don’t need your negativity or your I’m better than you speech because you handle it differently. But I’m the only one in my family who has it I am one of 7 and I’m the only one who has it and neither of my parents have it either so talking to someone about it has been a struggle because they can’t possibly understand even though they try. Good for you that you are doing good with it and I’m sorry your children have it but at least it’s not out of the norm for them and they have someone with knowledge about it that can help them through. I don’t have anyone that’s why I came here and negative rude hateful comments are not needed or welcome so if you feel the need to say anymore negative things to me or make me feel worse then please keep that to yourself


(Lilly) #17

Trust me I know how you feel I guess 1987 was the lucky year in my family because I’m literally the only one with it. Thank you for the tips and I was actually in the Army until I was honorably medically discharged for my heart, which is weird they didn’t diagnose me then because of all the tests you go through but it is what it is.


(anita) #18

i am very sorry. i did not mean to be sonegative, i guess your e.mail really upset me.
i see my brother and he is so sorry now for what he did. my children do not have diabetes. i only want to help you, not make you angry at me. i guess my emotions took over. i am truly sorry again.

anita


(Tracie) #19

My heart bleeds for you. This is a tough disease, but it doesn’t have to be this tough. My daughter was diagnosed at 4 yrs old, almost 5, and like you she is the only one in our family with T1D. She is now 11 and doesn’t remember a life without T1D. It’s not that you are NOT normal, living with T1D is YOUR NORMAL. And that is OK! You can have an amazing life and do amazing things! There are so many people that live with T1D and have great lives!!! There are also so many worse things out there that you could have. So, you are a little sweeter than others, it’s ok and it manageable. Reaching out and finding a support group and others that understand will help you a lot, but know that you are not alone, you are amazing, and you can do this! There are many days that it is hard, and you just have to fight it harder. Try the pump again. It helps a lot and you can be discreet. My daughter is young but she just owns it. She told Dave Ramsey (the financial guy) when he asked her what her name was when she was 5 that her name is Bailey, she has diabetes, brown eyes, and curly hair. If you treat it like that, so will the people around you. It is a part of you, just like your hair color or your eye color. OWN IT! You can do this! You can change your future, but only you can do it!!! I will pray for you that you find peace with T1D and the strength to manage it.


(joe) #20

@Lilly_Harrison hi Lilly, The trauma of getting diabetes will bring up all sorts of thing for each of us. When something hits close to home, please don’t be surprised if a reply comes from that place - what I am trying to say is some folks react negatively because that’s where it comes from in them.

also you’re not alone. type 1 rarely runs in families. you happen to be the only one in your family… just like me. I am the “only one” in my family because t1 does not have a strong family genetics line ,period.

anyway if you put yourself out there, you’ll find that all feedback has some kind of value. a value to either teach or learn something from, a message, a morale, or something you can leave because it might be helpful for someone else reading. sorry this wasn’t pleasant for you.