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Been lerking now posting

Discussion in 'Introductions' started by CassiesMama, Feb 1, 2010.

  1. CassiesMama

    CassiesMama Approved members

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    Hi my name is Chrystelle and my daughter Cassidy was diagnoised on Dec. 16 2009, talk about a crappy early christmas gift. Cassidy had been complaining of tummy aches and headaches for awhile but every time I took her to the doc they never found anything, mind you they never did a urine test or took blood cause she was deathly afraid of needles. Then that week I noticed she was peeing a lot more then usual, thinking it was a UTI I sat her up with the doc and we got the test done. I will forever remember how pale he looked when he came in the room and told me she had sugar in her urine. Her doc was mine when I was a kid, and it seam liked it hit him harder then it hit me at that moment. We managed to pin her down long enough to poke her finger for the first time to find out that she was at 379. I thought that was super high but after reading some other folks stories I feel so blessed it was as low as it was. She only had 5 ketones i think they said. Her doc told us to head over to the childrens hospital and go straight to the ER. Where once again we had to hold her down for the IV and more poking. Its so hard to explain to a 9 year old that she will need pokes and needles for the rest of her life, and all I felt that I could do was keep a brave face for her and hide my worry. I dont remember crying once during the following week. I do remember my anger at my dad's friend for saying that I shouldn't have her on insulin cause they got pills for that now, and trying to in vain to explain she was a type one and her body had attacked its self. Almost thought it would be easier to hit my head on a brick wall. We have been trudging along with our new normal, tho the bad luck continued with our car breaking down and getting screwed over on a different one. I was always staying up beat and positive in front of my girls. Yet at night when my angels are sleeping I am crying hoping that this is all a bad dream, praying it all goes away, yet knowing that it wont. Wondering if I will ever get another night of sleep again. Knowing that right now she is honeymooning and her numbers are going all over, and she has had a few lows at night keep me paranoid that I might not catch one. Finally will catch a few ZZZ's when I know the hubby will be up and able to watch her and catch her. It don't seam fair, but she has been a trooper. Wanting to test herself, telling me when she is low, still not able to tell when she is feeling high but I can tell by her attitude. Even wants to give her own shots but I am still leary of that since the few times we have tried she pulls the pen out too soon. I am heart broken over what I feel she has lost, given she looks so much better then she did before we found out, and I am so glad we now know. But I miss how carefree she could be before. Deep down I know it gets better, but when does it get better? When does the worry dim so you can get a good nights sleep again?
     
  2. ecs1516

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    Hi, It will get better but it will take some time. As you get her regulated it will require less checking. I highly recommend diabetes family camps, other diabetes support group events and the FFL conference in Florida through the website. Meeting with other families with not only help your child meet other children with this but it will help you too.


    :cwds:
     
  3. Barbzzz

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    Chrystelle (what a pretty name, btw), welcome and sorry you've got to be here. It does get easier, though there will always be a 2 steps forward 1 step back feeling to it. When is hard to say, there will be beautiful days and there will be crappy days. Its the nature of the beast, unfortunately.

    Your daughter will begin to feel her lows sooner or later, and you are right, you'll be able to spot them by the attitude change. I've got an 8 (9 tomorrow!) year old with plenty of attitude to go around... I am NOT looking forward to puberty.

    Don't worry so much about her wanting to take more responsibility for her disease with her own injections. Alex uses a pen and she doesn't hold it in for even a 2-count, but everyone is different and she seems to be no worse for the wear.

    ((HUGS)). It.will.get.better.
     
  4. CassiesMama

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    I know our childrens hospital has a support group during the school year that I want to check out but our transportaton issues leave us stuck. Till tax money comes in we wont be going anywhere. I was also going to check into sending her to camp this summer if possible. I would love to have more people around me that know what I am going through right now. All my friends and family can say sorry and I know what your going through but really they dont they have never delt with a type 1 before, and none of them are willing to learn how to care for her so my husband and I can have a break. This has been a huge strain on us all and we both could use a mental break just for a few hours. I am hoping that maybe we will have enough tax money left for a weekend away with the kids to kind of get our minds off all this stuff. I know D dont take a vacation but at least we could pretend its not there for the few hours between checks I hope. At least on this board I know that you all have been where I am now and that helps to not feel so alone.
     
  5. Barbzzz

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    Chrystelle, we don't get a lot of support where I am either. All of my family is in the states, my dh's family is clueless and there is really no such thing as counseling. It's all D, all the time. That being said, you will be surprised to learn that, while D does not take a vacation, you will eventually become so accustomed to the routine that you can enjoy life again. It has taken a year (for me), but it has stopped being so all-consuming.

    Oh, and why not come on over into the parents forums -- you'll find most of us hanging out there.
     
  6. Stanca

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    We're like you

    Hi. I just read your post and your story sounds like ours. Our 8 year old was acting lethargic (which is unusual because she's always been 100 mph since birth--always in a hurry to do what she wants to do--she was born in an ambulance she wanted to come so fast!) but she never complained of feeling poorly. She had gotten up to pee in the middle of the night for about 5-6 days, but not every single night. She is usually a camel and can hold her pee forever! My husband and I had even commented earlier that week that her face was thinning out and our baby was leaving us. She'd been kind of lying around the house (unusual) and not very hungry, but very thirsty. Then on Wed, Dec 23rd, 2009 while we were at the gym, my son (19 yrs old) calls us and says that Lia has vomited, so I call the ped's office and make an appointment for later that day. When we get there, we tell them the story and thinking that it was strep, just waited for them to tell us that we needed to go get a RX filled for amoxicillin, but no, they came in with a glucose monitor and at that point I knew what it was. The doctor came and got us and told us to go the emergency room. We have three kids and oddly enough, the one having the toughest time with all of this is our middle child, she is 12, 7th grade. Not sure how to handle that.
    We have found a great deal of support with our Children's Asthma and Diabetes Center. The JDRF certainly must have a local chaper for you. Visit www.jdrf.org and look where your local chapter is. Even if it far away from you, you might be able to contact people via email. This website is phenomenal and I read it every day, several times a day. We are very new to this, too, only about 5 weeks into it. There are days when we are just beside ourselves. Our daughter is on Lantus and Humalog. Everyone says we should go to a pump, but our doctor won't recommend this early on...we'll see. Her next appointment is April 5th.
     
  7. tiffanie1717

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    Welcome Chrystelle! I'm sorry you have to be here but glad you came out of lurkdom! :)

    It's a change of life and it's hard. I won't say otherwise. I think the hardes thing for me was about 5 months in when I realized that this wasn't going to go away. You really do have to learn to live a new way. So it's not always easy, but it definitely gets better!

    I hope that you can find some people that are close to you here on the board. Maybe you could even help each other and give each other some time away. No one knows how to take care of D kids better than another mom of a D child! :)
     
  8. CassiesMama

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    We have our 6 week follow up appointment on Wednesday. At our last appointment was the 2 week follow up they had us learn about sick day care. I paid attention like you wouldn't believe but for some reason i have this suspicion I am going to forget it all the day she finally does get sick. Right now she is on 4 units of lantus at 10pm and 1 unit for every 25g carbs.
     
  9. Stanca

    Stanca Approved members

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    Also, about your bad luck...seems like we've had our share, too. My grandmother had a stroke the day after Lia's dx, our credit card number was stolen and someone bought $4000 worth of make up with it, our son ran into our garage door so we had to get a new one...$1200!
     
  10. CassiesMama

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    Thats one thing that I am still having a hard time coming to grips with is that this wont go away when your kids are sick you give them medicine for a few days and then they are better this dont get better. Its a very cold reality some mornings. I would so love to find other moms and dads up in minnesota then maybe I wouldnt worry to leave my kids with another person if that persons kid was D too. Would give me peice of mind.
     
  11. CassiesMama

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    Ok I think D bring bad luck then from the sounds of it >.<
     
  12. CassiesMama

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    Oh and I forgot I want to get Cassidy on a pump asap but the endo said we would have to wait for the honeymoon to be over. Said on average that it will take about 6 months before we can start working on getting her one.
     
  13. Christopher

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    Hello,
    I just wanted to say welcome, but sorry you have to be here. You have found a great site for support and information. The early days are very tough, you are overwhelmed emotionally, sleep deprived, and scared. But over time you will become more comfortable dealing with all the things you need to do to live with this illness. You will find a "new normal" believe it or not and things will get into more of a routine. All the parents here are proof of that.


    Here are some books you may find useful:

    The "bible" of childhood diabetes, Understanding Diabetes (aka The Pink Panther book) by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.
    http://www.uchsc.edu/misc/diabetes/books/ud11/ud11.html

    Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin [ILLUSTRATED] by Gary Scheiner, Barry Goldstein

    Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace, Second Edition by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover. US$16.95.

    Type 1 Diabetes: A Guide for Children, Adolescents and Young Adults -- and Their Caregivers by Ragnar Hanas, M.D. Published by Marlowe & Company, New York, 2005. ISBN 1-56924-396-4. US$34.95.


    Not sure what your school situation is, but here is a link to a thread that has a lot of info about dealing with schools.

    http://forums.childrenwithdiabetes.c...ad.php?t=20042


    Finally, in addition to the forums there is a chat room here where you can talk to other parents in "real time".

    http://www.childrenwithdiabetes.com/chat/

    Hang in there :cwds:
     
  14. 2type1s

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    Welcome to our little club. It's sad to have new members join! I remember feeling many of the same things you said. I can tell you that there will be many days where you just go through the routine, and everything seems sort of normal. But there will be bad days where things are not OK. Here...even with 2...the good far outnumber the bad. It's a big load to bear. Sleep is probably the biggest issue. But honestly, you get used to that, too. Blessings and prayers to you, and remember "every thorn has a rose"
     
  15. JeremysDad

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    Welcome. December was a busy month. Jeremy was diagnosed a day before your Cassidy.
     
  16. CassiesMama

    CassiesMama Approved members

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    Before I was told about this site I was using the juvination boards, they dont seam as active over there but it seamed like there were a ton of us given the dreadful news in december.
     

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