Topic: You won't believe my family's run of bad luck....
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Everyone,
I feel like Eeyore from winnie the pooh with a giant, and I mean giant rain cloud hanging dirrectly over my head...
Myslef and my 2 children were all diagnsod with lyme.. my 7 year old daughter was diagnsoed with dibaetes 7 months ago..read on it gets better...
My little girl has been having one heck of a time trying to deal with her juvenile diabetes. We are 7 months into it and she has been in and out of the hospital with complications.
Just as she beat lyme, she was diagnosed with Juvenile diabetes. Sadly she has type 1 diabetes, ( only 5% of people with diabetes, get type 1) so there is nothing i can do to fix it. She will have to continue getting finger blood test (10-12) and insulin shots (4-6) everyday forever..or until they find a cure.
Plus Mikayla has hypoglycemia unawareness where she isn't able to feel a low blood sugar coming on until she is in the 40's or 50's. which is too low. So she has had several lows, where she gets so low that she falls down or is too weak to even stand up..this is soooo scary!
Just got off the phone with my vet. Mikayla's puppy Zoey ( a little cocker spaniel, we watched be born 8 days before Mikayla was dxd with diabetes) is losing weight and not eating well. The vet said she wants me to bring her back in for more tests tomorrow, she thinks she may have diabetes..
I'm thinking will it ever end?
My Gram just passed away on Jan 3rd,
Mikayla ended up in the ER on Dec 21st with diabetes complications,
Derek is having horrible joint pain from his lyme disease that is effecting his school work,
Mikayla has a cold this week and her blood sugar is over 600 ( which is dangerous)...
My husband and I are trying to keep our marriage together as the stress of having a child so sick, takes a toll on one's marriage, even the strongest ones.( I know we'll be okay, but it's a hard time right now)..
I have been battling pneumonia since Dec. 9th and now have a sinus infection on top of it....
My twin sister who has had 3 brain surgeries for trigeminal neuralgia, is in so much pain, that she has to have injections into her scalp to make the pain bearable, not go away..just bearable..
And on top of all that some of my lyme symptoms are coming back after over a year with no meds..
So any ideas what I should start carrying around for good luck charms? But hey, it has to get better right.
Missy
[ 26. January 2006, 09:51 PM: Message edited by: lymebrat ]
Posts: 3154 | From NH , USA | Registered: Oct 2002
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posted
You have a real load thats for sure. I usually try and respond with a flippant happy answer that will make a laugh but turning your situation upside down to find a funny side doesnt seem appropriate.
I hope that you and your husband can find a bonding strength in fighting the battle with and for your daughter instead of getting weakened by its heavy burden. If your able to do this then I know her way will be made easier too.
My heart& good thoughts is with you. I have nothing else to offer cuz fortunately Ive never had any experiences that would give me any wisdom to pass along.
Posts: 561 | From connecticut | Registered: May 2004
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
wherever you can find some good luck, you'd better!!!!
someone once said to me, if it weren't for bad luck, you wouldn't have any luck.
i'll say a prayer for you and yours
best, hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Your luck must be a kissing cousin to mine. If I can touch something, I can break it. So surrounded by alot of brokes huge items that need fixin. Wish I had a magic wand.
My only thought when reading this is for your son with huge jint pain. If somebody would have only told me way back then that the joint pain would lessen alot by taking 2 Glucosomine/Clondridin(sp) a day along with 2 Citrical, and 2 GOOD magnesium caps.(Wal-mart stuff doesnt qualify as good.) try your local pharmacy shelf (not box store specials). This is a long term fix, it takes a long time to get-her-done. But they will pry that combo out of my cold dead hands!!! Go three days without any one of them and I am climbing the walls getting them!! I really think he will find long term relief from these too. if after 4 months he doesnt try something else!!
Hope your relief from your luck brand comes VERY quickly, cuz mine wont. I B --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
your and husband are under enough stress to kill 10 people. many times its the same here. prayer sent for some relief, breakthrough, insight into solutions.
Posts: 2708 | Registered: Feb 2005
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posted
I am so sorry to hear of all your stress and illness. I was actually feeling sorry for myself because of my problems and then I see you struggling with your children so sick and your self and your husband. That must be hard.
Here is a big ((((((((((((((hug))))))))))for you.
This disease sure has it days huh?
Take care
Cathy
-------------------- There is light at the end of the tunnel. I went from existing to living again. You can too! Posts: 192 | From Myrtle Beach, SC | Registered: Mar 2004
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Thanks Everyone......
Sofy
Thank you for posting. I think our daughter having diabetes, is truly the hardest thing my husband and myself have ever had to face. When I found out both my children had lyme, I was devastated, but I knew, that with the care of a great LLMD ( Dr.J) that with time, they would get better.
With Juvenile Diabetes, it is so different. Every morning we wake up knowing our daughter is ill and it is sometimes overwhelming to face all that our daughter will have to endure, just to stay alive.
She is only 7 and has to have all these blood tests every day and so many shots..but she wakes every day with a smile no her face, despite everything. It is her that I draw my strength from.
My husband and I have been together since we were 14 years old, class sweet hearts and everything We've been together 24 years and we have a strong marriage, but the stresses of having a sick child, can effect even the strongest bonds.
My husband was in total denial about her having diabetes for about 2 months, and then when he realized that this was real and she would need shots everyday forever ( or until they find a cure) he just couldn't accept it.
He is coming to terms with it and the people in our support group at my daughter's hospital, all say it took the dad longer to learn to cope with their child being ill.
The good news is that our local Lion's Club may sponsor us to go to a family diabetes camp this summer. Where we will get to meet other families just like ours who are trying to cope with having a child who has a new diagnosed of juvenile diabetes. I think this camp will be beneficial to our entire family.
Thanks again for posting. I hope that with time, we will be stronger because of this..I think we will.
Thanks again, LymeBrat
Posts: 3154 | From NH , USA | Registered: Oct 2002
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hopeful
reading your post made me smile as my friend said the other night that when he thought about all we have been through lately, he kept thinking about a song they use to sing on Heehaw( not sure if I spelled that right).
So my friend broke out into song singing " If it weren't for bad luck, I'd have no luck at all..(something).. despair and agony on me.."
he sang it with a funny country twang and I doubled over laughing. I vaguely remember listing to this song on that show a couple of times..
Thanks for posting
Posts: 3154 | From NH , USA | Registered: Oct 2002
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Meg
Thanks for posting. I think the saying you are thinking of is the one my mom always says. She says. " God will only give you, what you are able to handle" and I told her.. " Well....He sure is pushing it"
And a dear friend who past away a couple of years ago, would always say " what doesn't kill us, will make us stronger"
Thanks again for posting!
----------------------------
Just Don
Thanks for posting. I have read about several folks here who have been having a bad run of luck....
Thank you for the information about my son's joint pain. I will bring it up when I talk to his LLMD. I know Dr.J is going through a bad time right now, so I'm not sure if his office is taking call's, but I'll find out.
My son gets really upset with himself as he can't control his hands. He can't keep up with this writing assignments as it simply hurts him to much too write.
We did go to an OT, who made the school do a 504, so that he could have the teacher write what he dictates, use a computer, etc. But my son told me the other day, that his teacher isn't doing it.
So I had to talk to the school nurse this week and she said she will make sure he gets the help he needs. The doctor is concerned about saving his joints and all the writing can actually make his hands swell.
Also, it effects his handwriting, which use to be very neat. And now his work looks messy, even though he is doing the best he can. SO I am requesting that all his work that will be on display at school or shared with other students, be typed, so he won't feel so different.
He is a very smart little boy and gets all A's and B's. But his joint pain and how it is effecting his school work, really bothers him.
Thanks again!
Posts: 3154 | From NH , USA | Registered: Oct 2002
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lymemomtooo
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posted
Brat, I am hoping and praying for the best..Will send a PM..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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bettyg
Unregistered
posted
Missy, what insurance company do you have?
I have wellmark/BC/BS. I'm going to write the company's PRES. about lyme disease and DIABETIS; getting educational info out to us fighting both illlnesses. falling asleep at pc; going to bed...
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
HI Everyone..
Thank for posting
Just wanted to pop in and let you know the puppy's blood work came back negative for diabetes, but something showed up so they are now checking her for Addisons Disease...
I'll keep you posted.
Thanks again
Posts: 3154 | From NH , USA | Registered: Oct 2002
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posted
Hi Missy, I've been off the board a while, sorry to hear things are so difficult for you right now. You have always been one of the first people here to jump in and offer words of encouragement and wisdom to others who are suffering, I hope all that positive energy comes back to you ten-fold. Cindy
Posts: 688 | From CT | Registered: Jan 2003
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Everyone..
It's been a busy week. Mikayla crashed at school..meaning her blood sugar dropped to 46 ( almost 1/2 of the normal range)and when I got there 10 mins later, she was only up to 48 and she looked so pale, her eyes were glassed over and she was limp. It was very scary.
She did recognize me right away, so I was encouraged about that. It took the nurse and I about 2 hours to get her blood sugar up to the target area and even then, it took another 2 hours at home, to keep her from going low again.
We're not sure what happened, but this is the second time in the past months where she has dropped so low... I will be sooooo happy when she is able to feel a low coming on.
I have a bit of what I hope, is good news about our puppy. It looks as if she has a bladder or kidney infection and she has been on the meds for 6 days and is doing much better. I hope this is all it is and that she will be okay.
Okay, I have to run to the school and pick up the kids, I just wanted to stop by and give you a quick update...
Thank you for all the posts!
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Cindy
Thank you for the kind words and well wishes. I have been trying to find a support forum like this for diabetes, but so far I haven't been able to find one that even compares to here.
This board is so great and is full of so many wonderful people who care. I have had more support about my daughter's diabetes on this lyme site, than any of the diabetes forums I have found.
I always knew I was lucky to have found this board when we were dealing with all our lyme issues, but now I know just how lucky we were.
Thanks again, it was nice to hear from you!
----------
Pab,
Thank you for the info about the Insuflon. Luckily, Mikayla is a real trooper about getting her shots so we wouldn't have a need for it. But it does look very familiar to what she will need to use when she goes on the insulin pump. Thanks for the information!
Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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Caryn
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Member # 366
posted
Hi Missy,
i've never understood why you call the second half of your on-line name "brat".
you sound to me like a very devoted, loving and determined mom whom along with your husband, have had to endure years that should have been so filled with fun and joy, but it was unfairly, and nothing will explain this to us, taken away for no reason. well, maybe unsavory reasons.
i don't always read the computer anymore, so miss a lot. i can't believe what you have had to go through.
i just tell as many people as i can about this; what is happening to so many of us. the more people who know, the sooner it will change. it will get better.
i know that it will. hugs, Caryn
Posts: 1093 | Registered: Nov 2000
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char
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Member # 8315
posted
Hi,
I am writing to say hi. I have been following the thread here on the challenges you family is going thru.
How old is your son? Mine is 12 and has similar handwriting issues. He was given an alphasmart by school. Have you heard of these?
I have developed similar problems and have started having trouble taking his dictation!
My handwriting looks different and my signature looks like a celebreties'. Got to at least pass off a few of my nuero symptoms off...
I think about you, especially when I am up trying to get my insomniac teen down.
Can't imagine testing thru night.
How are you doing physically? Didn't you have pnuemonia?
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Caryn,
Thanks for posting.
You said:
[b]" i've never understood why you call the second half of your on-line name "brat"."[b/]
I had to smile when I read your post, as several people here have asked me the same question. The reason I chose this name is that I am an "Army Brat". My dad served 20+ years in the Army and we lived on Army bases when I was growing up. People always call children who are on the bases "Army Brats" and I always liked the name.
I guess I am proud to be an Army Brat, so as I have lyme and am an Army Brat, I called myself "LymeBrat"
Yes we have gone though alot, but I have to keep reminding myself how lucky we truly are.
Every time I go to the children's hospital, I am reminded again how fortunate we are that our daughter has an illness that can be treated. And that with constant monitoring,insulin and medical care, she can hopefully live a happy,long, somewhat "normal" life.
Sadly, many children at the children's hospital are not so fortunate, nor are their parents...so I count my blessings everyday.
Thank you for posting, and thank you for the kind words. I am holding you to your word that it will get better
God Bless, ~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
lymebrat, I sent you a private message about your daughter that you haven't read yet. Please see my private message on her condition and consider.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Lymebrat, since you are an Army Brat I thought you might like to hear my muddled inspirational memory of a military mom and dad who went thru the same thing as you about 35 years ago.
We were all living in a hotel in another country waiting until we could find some kind of housing. Our room came with 3 meals a day that didnt offer a lot of selection or time preference.
They cooked and told us what time to eat and we did.
My neighbor and her husband had one room that was wall to wall single beds for her, husband and 2 kids.
Her daughter was first or second grade and got diagnosed with diabetes shortly after we moved overseas and into the hotel. Brother was a year older
Mom was a trooped and never skipped a beat. Nothing the hotel cooked was suitable for her daughter so she went out and got herself a single burner sterno stove, ice chest & food and cooked her daughter 3 meals a day for the many weeks we were in the hotel.
She never complained about the cooking etc but did complain repeatedly about the complete lack of privacy for her and her husband.
They solved this problem too. Late at night after kids were asleep we would hear giggles coming from the bathroom. Ah what a way to relieve the stressers of the day.
Ive been single for a long time but Im convinced my over 20 years as a military wife gave me coping skill that I would have never developed otherwise.
I always hated to whine & ask someone for help just cuz my husband wasnt home. I learned how to do it myseld and would have what I called a "superwoman" moment.
These coping skills have helped me to still be upright and not in assisted living.
I hope you and your family are coping well with this obstical in life.
Posts: 561 | From connecticut | Registered: May 2004
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We've been together 24 years and we have a strong marriage, but the stresses of having a sick child, can effect even the strongest bonds.
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