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When does it get better????

Discussion in 'Parents of Children with Type 1' started by Mom2Quinn, May 16, 2012.

  1. Mom2Quinn

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    My 11 year old was diagnosed 3 weeks ago. I'm a nurse, so I immediately knew what the diagnosis meant, I ran out of the dr.s office & bawled. He was admitted to the hospital & I guess I was still in denial, because I kept wanting to ask when they would do testing to confirm the pediatrician's diagnosis. I kept thinking there has to be something else this could be.
    In the hospital I was envious of the family in the next room, their toddler was undergoing surgery the next day for an obstructed bowel. I kept thinking, it's just not fair, they get to have surgery & be done with this. My sons life is changed forever.
    The next day as I picked up his glucometer from the hospital pharmacy tears streamed down my face. I kept wanting to shout at everyone, "I shouldn't be here! I shouldn't be picking this up! This has to be a mistake." My well-intentioned friends kept telling me it could be so much worse, I just smiled & thanked them thinking to myself that it was worse. It was worse than my son deserved, it was worse than before he was diagnosed, it just was worse. It has been 3 weeks now & just when I think I'm doing ok, I'll begin crying over something inconsequential. When I see his dot-ridden stomach from the shots, when I see the bruises on his fingers, when I have to tell him no to a glass of apple juice (his favorite drink). So my question is, when will I be better?
     
  2. MomofSweetOne

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    I'm so sorry about his diagnosis. The first few weeks are the worst, and then things get better. They really do. Diabetes rares its ugly head at times, but most days, it's just along for the ride, not ruling life. I was surprised recently when my daughter told me she'd chose to be rid of allergies before diabetes. Someone told us about the Starlight Children's Foundation that provides activities for families with chronically ill children. We've only gone to two activities so far, but both times, my daughter has watched what other kids are dealing with and concluded, "Diabetes isn't so bad."

    Grieve. Grieve lots and as often as you need. It's a death. Let him grieve. But, it's NOT their death, and our outlook and attitudes model so much for the kids. Don't feel sorry for him and change the expectations for behavior. Their world has already been rocked, and to take that security away isn't helpful. In fact, it's harmful. Expect out of him what you did before diabetes, and you'll find he's still himself. The days will get better, the carb counting more routine, the injections...I've learned to numb myself to them most days.

    Life is good. It's not something to take for granted. But diabetes doesn't slow them down too often (nasty lows or ketones will), and they acheive so much.
     
  3. LoveMyHounds

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    Hugs... We all have been there. But it does get better.
    Our first weeks were horrible, I cried all the time. At home, in the car, while shopping, even in my sleep :(. My DD (12) was diagnosed 7 months ago :(.
    I'm doing much better now, you will too. We can control diabetes and wait for the cure. We have time. Some people don't...
     
  4. nanhsot

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    First of all, huge HUGS to you. Every parent here can relate. As the PP said, give yourself this time to grieve, it's part of the process needed to move on. Your grief is real, it's valid, and it's tough.

    To answer your question, for me it was stepwise. It took about 6 weeks before I stopped dreaming in numbers and I woke up actually thinking about something else, normal things. It took about 1 month before I quit crying daily and about 2 months before I quit crying weekly. It's not like I cried all the time, it's just that your emotions are so close to the surface and just about anything will set you off.

    Soon though you'll find that it happens less and less, and for me the entire first year was tough emotionally, but it gradually got easier and easier and while there are still days (2 years later) that I can just LOSE it for what my son has to endure, most days his diabetes is just another chore to deal with.

    My son is independent with his management, I work extra to pay for things and I am tired, stressed, and sometimes bitter. But truly now diabetes just is part of the package of my life and we just move on. I can't remember when I last cried over diabetes, it's been a while, and my son has had emergency surgery, we've gone on vacation, he's taken finals, he's gotten his own vehicle, there have been big milestones in his life that we've had to learn to navigate.

    So no one can tell you that on X day you'll feel better. Because you may on one day, but then 3 days later it will hit you again. But then it may be 10 days before it hits you again. And pretty soon you'll realize that it's really OK. You'd still trade it away in a heartbeat and put it in your own body without question, but it will soon be just what you do day in and day out, like brushing your teeth or going to work. You'll also find yourself with an extra dose of compassion for your diabetic patients if you have them (I also work in healthcare/rehab therapy) and you'll find yourself one of the more sought after resources in diabetes management at work~but on that note you'll have to throw out everything you thought you knew. You will also get VERY frustrated when you come across nurses who think they know how to deal with diabetes, so there will soon be different frustrations you can't anticipate! Some days the tougher cases will hit your hard, in my case they are all type 2, but it still just hits you in the gut (I once had to call a code on a lady whose BG was 11 and after all was done and she was fine, I went to the office and just sobbed and sobbed over how unfair diabetes is).

    It's been 2 years for my son and there are still days it feels surreal, like it's not really true. Silly things like someone's JDRF walk video can set me off crying. Some days my son will ask me advice for how to deal with something and when I don't have an answer, I'll privately go cry. But it's all inside now, not on the surface.

    What I do know, without any doubt, is that you are not alone. This website has taught me, held my hand, slapped me upside the head, given me more insight and real life knowledge than anything else out there. Ask questions, seek advice and support, THAT is what helps more than anything.
     
  5. lgouldin

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    My DD was diagnosed at 11 less than a year ago.

    For me, it didn't get better until I accepted it and decided to move on. I started telling myself "it is what it is" and "it could be a lot worse:eek:". I have a close friend who has it a lot worse:( so that was pretty easy for me to see.

    The biggest reason was my child...I had to get over it for her, so she could have her life back. I decided I was going to do everything in my power to make this work for her.

    I still get upset from time to time, but I try to focus on her. What she needs and what she needs from me in order for her to move on.

    This is just what worked for me and everyone is different. What I do know is no one can make it better but you. Decide to make it better.

    So sorry for you diagnoses.
     
  6. manda81

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    (((hugs)))

    I don't think anyone can really answer that. It does get better, though, eventually. For us, it was when we started winning our battles, taking our lives back. The more we learned, and the more confident we were, the more we gave this disease the proverbial finger. :p Little things, like giving him that apple juice he wants, and being able to bolus for it and go on about your day will be the wins. Start small. I think our first thing was donuts. The kiddo was dying for a donut, so we did it. Then it was the day trips out, then a mini-vacation... and eventually things went back to "normal". Hang in there!
     
  7. Lee

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    This is really great advice. Although, I will be honest, the statement 'it could be worse' rankled me for years, until one of my closest friend's child got A LOT worse. When I witnessed that, I became grateful that she has Type 1 and not something worse.

    Also, I know this isn't a thread asking for practical advice, but you mentioned bruised fingers. The single.best.thing you can do is get a Multiclix for testing. This has a different action then other prickers and is much less damaging. I waited 2 years before getting one and I wish I wouldn't have.

    You can find them in pharmacies for about $20, or if you are lucky, you can find an Accucheck meter with one in it for cheaper - we had a coupon for $10 off a meter, so we got the multiclix for $10 and were able to donate the meter.

    https://www.accu-chek.com/us/lancin...55&adpos=1t1&gclid=CJ3y0eDshLACFcQRNAod2F3Qjg
     
  8. selketine

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    The first weeks and months are hell - no doubt about that.

    We were on a fairly inflexible insulin plan for the first few months as we adjusted but as time goes on you can learn to bolus for what he eats and fit ANY type of food into his meals and snacks if you want. For the long run you should check out pumping as that allows the most flexibility.

    We never got bruises on the fingers so you may want to make sure your settings are the lowest possible - and look and some other lancing devices like the Delica or Multiclix. We did get some bruises from shots. For shots the "Inject-ease" was very helpful - you load a syringe into it and push the button - it hides the syringe and makes inserting it much easier. You still have to push the plunger.

    Hang in there and learn as much as you can.:cwds:
     
  9. DsMom

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    I can't add much to the great advice already posted, but I wanted to say welcome, and how sorry I am you've had to join us here.:(

    We're more than 3 years in now, which probably seems like an eternity from where you are standing now, but feels like the blink of an eye in many ways to me. It is very easy to remember that fresh grief and shock you are feeling now. I remember the day after dx in the hospital, they were starting to teach me to carb count for his meals that day. I was barely able to do simple math in my head, I was still so dazed (and spending most of the night in the ER didn't help!)

    Try to be kind to yourself during these early days. Don't beat yourself up for any mistakes, don't feel bad if you need to cry every day, don't feel bad for your anger or irritation with others. Like others said, there is no one magic day when things start to change. Right now, hold on to the fact that it WILL change. This dark tunnel you are in is not endless...you will make it through to the beautiful things life has in store for your son. Keep him talking as much as possible. Encourage him to Google famous people with Type 1 diabetes so he will see how many people excel while dealing with D...entertainers, athletes, race car drivers...D does not hold them down and will not hold you son down either.

    Personally, I have a son with D, but have also watched my niece grow from a newly dx 2 year old to a married woman with 2 beautiful, healthy kids. Her life is full and interesting...D is something she has to manage, but it is never who she IS. It is reassuring to me to have an example of what my son's life will be....NORMAL, with a dash of D on the side!!:cwds:

    Hang in there. Keep posting. The people here are wonderful, and give the best support and advice.:cwds:
     
  10. Turtle1605

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    My son was diagnosed just after Thanksgiving. I researched anything and everything it could be other than what it was...almost to the point of driving myself crazy. Needless to say I had the worst Christmas ever. I simply could NOT stop crying. I also could not sleep and I would not let myself sleep because every time I woke up I had the split second thought it was a nightmare and when reality hit that it was not...the feelings would start all over again. I did have to get an anti-anxiety medicine so that I could function. While I hate relying on medications, I realized that I needed help. My doctor was more than understanding and helped me through that really rough patch.

    I got a LOT of support from this forum for which I will always be grateful. I will share a few things that helped me. First, your emotions may cycle...sad, depressed, haYppy, sick of dealing with it. This is normal. Second, laugh together and have fun together. The sooner you can make yourself do this, the sooner you will see his smile and nothing will help you heal faster than that smile. Watch a funny movie, have a water balloon fight, visit people who make you laugh, read a book of jokes, anything to get those smiles going. Third, share your experience with a lot of people (if you are comfortable doing so). I think you will be surprised at how many people you find that can relate and/or are willing to help. Fourth, a friend told me to get my son on the pump ASAP. This is a personal choice, but I can tell you that the pump does make things a little less exhausting.

    After all that....IT WILL BE OKAY. YOU WILL BE FINE AND YOUR SON WILL BE FINE. And...there are always people on here that can answer questions, cry with you or give good advice.

    My goal is for us to keep them super healthy...until there is a cure!
     
  11. ecs1516

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    Yes, I still have tears when some people say they don't know how I do it and it has been 12 years since diagnosis! But, That doesn't happen often anymore. Life does get better. It will be different ,but your child will be able to do most anything. My kids do more activities than I ever did as a child. They do sports - baseball, basketball, soccer, cross country. They are involved in a group with school that does hiking, camping, kayaking and white water rafting. We have just learned how to carry meters etc. in a waterproof bag. My kids eat like any normal kid. They just have to bolus for it. My kids were diagnosed at 10 months and 3 years. My oldest is 15 now and eats like a horse. Granted, he is on a pump but look how many boluses he had on Monday! Even with eating like a teenager he still keep his last two A1C's at 6.6. There will be more work with diabetes. But, you can do it. I also have gained some of my best friends through diabetes. I suggest Diabetes Family camps, JDRF support group meeting and CWD conferences in Florida.
    I also suggest the Multiclix. These lancet devices don't seem to leave bruises for us. We get them free at endo. I have never bought one. Also, we get all our meters free at endo as we need them.

    Bolus
    Time U
    05:35 0.300
    06:35 4.650
    06:47 1.650
    10:48
    Override
    (Suggested: 1.050

    1.000)
    12:35 2.150
    12:41
    Override
    (Suggested: 3.250

    3.200)
    12:44
    Override
    (Suggested: 2.750

    2.800)
    16:05 1.650
    16:11 0.400
    16:12 0.200
    16:13
    Override
    (Suggested: 1.300

    1.250)
    16:21 0.300
    16:31 0.600
    16:38 0.400
    17:38 0.850
    19:11
    Override
    (Suggested: 1.300

    1.250)
    21:17 4.500
    21:48 0.650
    21:49 0.300
    21:52 0.550
    21:54 0.500
     
  12. Christopher

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    You have gotten some great advice above and yes, over time you will feel better than you do right now.

    He shouldn't be getting brusing on his fingers from the finger sticks. You should try the Delica lancer, it causes less trauma than others. Also, use a meter that only needs a tiny drop of blood, like the Freestyle meter. That way you don't need to stick the finger so hard which also reduces the impact on the finger.

    As for telling him no when he wants juice, is there a reason you are not letting him drink juice? There really should not be any restriction on what he eats or drinks, but I am not sure what kind of directions you have been given by the Endo.
     
  13. denise3099

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    He can probably have juice but it might mean another shot. Or even if it's with his meal it might mean a major spike. I tend to agree that liquid sugars are best to avoid. But there's other stuff to drink. We started mixing "light" grape juice with seltzer to make grape soda. But I get that it's sad to say no.
     
  14. denise3099

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    I always hated the it could be worse speech, b/c hey it could be better too. But then it did get worse. it turns out that even if you have D, you can still get other stuff. Obvious, sure, but I kinda thought like this would be our burden. Like "God" or whoever wouldn't give you D AND say cancer. Once I came to terms with the fact that dd had D, I felt like ok, it could be worse. But then it gets worse and that's the real shock. Your kid may have peanut allergy and you manage. Then she gets D and life turns upside down but you find your bearings and you manage. Then a year later she gets asthma, but it's not too bad, except for the week long hospital stay. Then she's got constant heartburn and it turns out to be some kind of allergic esophigitis, according to endoscopies. But still, hey you are sending doctors' kids to college and thanking the insurance gods. Then, one thing and another and mysterious symptoms and every test comes back negative--except one: the MRI with a white spot the size of a meatball. My dd is fine. No worries now. But I'm just saying that D does get better, but as long as you have kids you are always waiting for the other shoe to drop. Some days it seems like D is the least of our troubles. Sometimes I think it actually gets worse, bc just when you bet your bearing life tosses you another ball to juggle.

    My advice is this: Paste a smile on your face and cry in your pillow at night. Reassure your kid that it's all ok and handle D matter of factly. Grieve in private, and on the forum, but in public realize that no one else understands so you may as well just get on with your life. We are here always. Good luck.
     
  15. 3kidlets

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    Sorry you have to join us.

    My daughter was dx 2 years ago. I knew before we got to the dr. that this is what she had. But it didn't lessen the blow when she was officially diagnosed. I cried. I cried a lot. Then the well meaning nurse in the hospital gave me that "it could be worse" speech. Not what I needed to hear.
    But life went on. She was 8 at dx and is now 11. She manages most of her own care - with me or the school nurse overseeing and checking in. But it does get easier.
    I guess I can say it got easier when I saw that T1 really had no impact on who she was or what she wanted to do. I was so afraid that she wouldn't be able to achieve the things she wanted to. I remember asking her endo in the hospital "what about swim team" and she said "what about it?". I was terrified to put her back in the pool. The endo said to put her right back in swim practice. She got out of the hospital on a Sunday. Monday she went back to school. Wednesday she went back to swim practice. There was some experimenting with her numbers and eating but 2 years later, she was one of the top 10 year old in our state and she competed in the Junior Olympics this past March in every event. And she was FAST! She got faster every time she swam. All I felt was pure pride. Other than her coach and some immediate swim team members and a few moms, no one in that pool arena of thousands knew she had T1. They just watched in awe as she blew away the times. Because T1 just didn't matter.

    Your life will go on. His life will go on. You will learn how to work everything in. Some days may throw a wrench at you but you will work around it and move on.

    I hate the "it could be worse speech" but when my 11 year old niece was diagnosed with non hodgkins lymphoma last year and had to have year of chemo, it did put things in perspective. Yes, this still sucks. T1 is a crappy condition. But we don't make it priority. It has very little impact on our day to day. It all just becomes part of what we do.

    My father in law is also T1. Has been for 35 years. I think my daughter has a great role model. T1 never stopped him from everything. He has been successful in his career, a father, a husband and a grandfather. He has traveled the world. My daughter sees this and knows that T1 doesn't define her. It isn't who she is.
     
  16. nanhsot

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    We don't drink juice anymore either, just not worth it quite frankly. We added Crystal Lite to our morning options, they have a lot of fun flavors these days. Heck, before diagnosis we NEVER had sodas in our house, after I bought tons of diet sodas just to give him a treat...now we have one of those soda makers with lots of different diet flavors!
     
  17. Helenmomofsporty13yearold

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  18. Mom2Quinn

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    We are currently using the delicate lancet on 3, I do 20+ fingersticks a day & rarely bruise my patients, but my son insists on doing it his way & won't let me show him :) While I'm happy he's so independent, I wish he would be a little less stubborn!

    Thanks so much for all the support & encouragement. You all gave me some really great feedback & ideas. I'm really glad to have found this board.
     
  19. liasmommy2000

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    I can't say exactly when but it will. The first year is the hardest. It is up and down. After that I think it gets a little better all the time. Oh there will still be hard days but the normal days are far more and even the bad days are mild compared to those early in the game.

    Seriously we are six years into this and most days we just go about it like everyone else with some D stuff mixed in. Oh it gets frustrating, annoying and we have emotional moments on occasion. But they are more moments than days.

    (((HUGS)))
     
  20. Mimi

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    Lots of great advice here from the best people to understand how you feel.

    Eventually you will get to the point where you really do believe that it could be worse. But right now this is your "worse." And that's okay. You need to grieve and feel what you're feeling in order to move on.

    There isn't any timeline that we can tell you when you will stop crying or grieving or feeling really ripped off that this happened to your child. It's different for everyone.

    Personally, information was my best friend. This place and reading all I could find helped me feel empowered and in control. Read and ask questions.

    Remember those psa commercials? "The more you know..."

    Very true with diabetes.
     

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