Topic: So far... this has been a crappy New Year! Need to vent...
lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Guys,
I am having a crappy New Year and just wanted to come to my Lymenet pals to vent...
This has been a horrible holiday season for us. First, as most of you know, my 7 year old daughter was diagnosed with type 1 juvenile diabetes 7 months ago. She was in the hospital on dec 21st, due to large ketones ( a complication of diabetes) she had to have IV therapy and it was a pretty scary night....what a way to start the holiday season and her Christmas vacation.
We are still having to struggle every day to get her blood sugars under some type of control. Things like sickness and stress can send her blood sugars sky high.
Well, my Grandmother had a bad heart attack on Dec. 29th. The tech in the ER said they had never seen anyone have such a severe heart attack and not die while in the ER.
We were blessed, as Gram did make it out of the ER and was admitted to the heart unit at the hospital. We had 3 wonderful days with her there. She looked so good, you would never know how sick she truly was. She passed away on Jan. 3rd.
We are so blessed to have been given those 3 days to say our goodbyes and to let Gram know how much she was loved. Not many people are given those final days to say goodbye, so I am truly thankful, I was given them.
Mikayla has always been Gram's little princess and when Mikayla was diagnosed with diabetes, Gram worried about her constantly.
So much so, that the last words that Gram spoke to me were, to watch over Mikayla.. and the last coherent words she spoke, were to my nephew and his wife- she kept saying "Tell Mikayla I love her"...
Mikayla took Gram being in the hospital and passing away very hard, her blood sugars were so high that they wouldn't even register on her meter, it just read "hi" ( which read as high as 600).
We did let her go to the hospital the 3 days Gram was well and Mikayla just loved being with her gram, but when gram got to the point where she didn't recognize any of us, I wouldn't let her go.
So the stress of knowing her gram was dying, and the fact that I never left the hospital until Gram passed, really took it's toll on Mikayla's blood sugars.
Thankfully now that things have settle down a bit, she is doing a little better. But as luck would have it, she got a cold yesterday, so her blood sugars are acting up again. Last night before dinner her blood sugar was 595 ( should be 80 -120) and when I checked her before bed she had gone down to 57, which is too low.
So I had to stay up most of the night, making sure that her blood sugar didn't drop into a dangerous low. It is such a daily balancing act, to get her blood sugars in the target area. I am told it is very hard to get any type of control the first year, but that it does get easier..I hope so.
And on top of all of this, I have been fighting pneumonia since Dec 15th. I went back to the doc last Wed. and my chest is clearing up, but now I also have a sinus infection. Figures. lol!
So, there's my story...
I feel like Eeyore from Winnie the Pooh, with a giant rain cloud over my head.
Those of you who know me, know I am not a stranger to bad luck.. (I have lyme as do both of my kids) but it sure does seem like life is throwing me a little more bad luck than usual lately.
Maybe I should start carrying a rabbits foot or something..any ideas? lol!
I do feel a bit better after venting..thanks!
But hey, even with all the bad stuff, I still am continuing to look for the good in every situation. Gram died and I miss her dearly, but she lived a good, long life and we were blessed by having 3 days to spend with her and to tell her how much we loved her...
Mikayla was diagnosed with diabetes, that definitely sucks! and her having diabetes, has been the hardest thing I have ever had to face..
but when I take her to the children's hospital, I am reminded how blessed I am, that my daughter has a disease that with constant supervision, blood sugar monitoring and daily insulin injections... she will hopefully be able to live a long, healthy life..many of the parents at the children's hospital, aren't so lucky..
And as far as lyme goes, things are okay. My daughter and I are still off meds and so far.. so good, ( though I am wondering if with the pneumonia and stress is giving me a relapse?)
And my son is still on meds, but he is doing better. His biggest problem continues to be the bad joint pain and the issues he has to face at school, due to joint pain effecting his handwriting and school work.
So while I do feel like Eeyore with a Giant rain cloud pouring down on me, I guess I feel a bit lucky as well. I think I need to get a bigger umbrella LOL
Thanks again for letting me vent! I hope you all have a wonderful New Year!!!
~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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posted
I'm very sorry to hear about your Gram, Missy. Being able to say goodbye does have its good points. I'm glad I was able to say goodbye to my mom too......over and over and over.
You will miss her and your family will miss her, but you will make it through this like you have every other challenge. I know you will. It's the love that gets us through things like this.
I sure hope Mikayla and the rest of your family [including YOU] begin to feel better very soon. I have some kind of asthma/bronchitis thing now and it's a downer....so I "hear ya!"
I know all the worry about Mikayla has really taken its toll on you. So please get some rest now and take care of yourself.
We love you and we care!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
I am sorry about your gramma.
Sounds so stressful keeping up with Mikayla's needs and the rest of the family, of course.
posted
Heartfelt prayers sent to your family regarding the loss of your Grandmother.
Many Blessings to Mikayla as well, she has had more then her share to face this year. These little angels teach us so much about life.
Missy - I do hope you are able to get some help, so as to take care of YOU as well, because that is paramount, and I know it is often pushed aside when you care so much about everyone elses needs as they are facing so much adversity.
Please don't forget yourself -- you are facing it all too, and your own health is so very important. I fear you are ignoring that to take care of others.
If Mikayla (and Derek) need mainly you, as I suspect they do.. please utilize family and ask for help so you have room to care for Missy as well.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
missy,
i'm so very sorry to learn of your grandma's death. you have such an amazing attitude of gratitude that you got to say good-bye to her.
having a sick child is so very draining on your own energies, so listen to mo and take very good care of yourself, too.
i hope the coming months will be brighter for you and yours!!
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Everyone,
Thanks so much for the posts, I truly appreciate them.
I have to run and pick up my daughter's pharmacy mail order at the post office, but I'll be back later to respond to your posts and give an update.
I wanted to post the message to Nancy before I lost it..
Thanks again, ~Missy
Posts: 3154 | From NH , USA | Registered: Oct 2002
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Nancy,
(I'm not sure if I'm doing this private message reply right, so I will add it to the thread as well...)
Thank you for the private message. It means alot to know that so many people on Lymenet care...
Yes, 2005 was definitely a challenging year, and starting the new year off with losing my Gram, isn't giving me much hope for 2006..lol But I'll keep hanging on..it's all I can do.
Thank you for your concerns... Yes, it is very tough to care for my daughter with diabetes. It is truly the hardest thing I have ever had to face.
Every single day, I worry about her..
I worry that her blood sugar will drop too low and that she will pass out, go into a comma or worse..
She has hypoglycemia unawareness ( where she isn't able to feel the symptoms of a low coming on..which is dangerous) so I worry that as she can't feel a low coming on, that the school will not be aware she is low, until her blood sugar reaches a dangerous low.
Another worry I and all parents who have kids with type 1 juvenile diabetes have, is keytones. Ketones develop when blood sugar is high or when a child is sick or under a great amount of stress.
What happens is that the body is unable to use the sugar for energy so it starts breaking down fat and eventually muscles, to burn for energy and it makes what is known as ketones.
This is very dangerous and if not caught in time, can lead to ketoacidosis, comma and eventually death. So far, my daughter gets ketones every time she is sick ( even with a cold). So I have to test her for ketones very frequently. (I was told to test her every time she has a headache, stomach ache or vomits even once.)
She was hospitalized on Dec 21st for ketones. She had large ketones and the normal treatment for ketones, is to give insulin shots every hour until the ketones go away.
This has always worked in the past. But this time, she was sick with a stomach virus ( she couldn't eat or drink anything and keep it down) and her blood sugar was low. So as insulin is used to lower blood sugar, I was unable to give her insulin to get rid of the ketones.
So she ended up in the ER and had to have IV therapy to get her blood sugar up enough to give her more insulin injections. It took 6 hours to get things under control. A very long 6 hours.
I was told by the ER tech that a child with large ketones can go into a comma if left untreated for even as little as 4 hours.
And 3 weeks before Christmas, one of the women on my diabetes support forum, told us that her 13 year old daughter had died due to ketoacidosis ( ketones). She had diabetes for over 6 years, so they knew how to care for her, but for some reason she had ketones, and the girl, nor her family was aware of it, so they didn't test her before she went to bed. She went to bed and never woke up.. I can't imagine what her family must be feeling.
And as if all that wasn't enough to give me ulcers and turn every hair on my head gray, we also have to be very diligent with her daily diabetes care..which includes 10-12 finger prick blood tests a day, and 5-6 insulin injections..every single day.
Mikayla is such a trooper about everything and there are many days I am simply awed by her strength, and courage.
She is so full of spirit and is determined to not let diabetes take away her childhood. She only said "why me" once. And she said she doesn't know why God gave her diabetes, but she knows ( with out a doubt) that God will take care of her. Pretty remarkable for a 7 year old girl. ( was dx 6 weeks before her 7th b-day)
I wish I had one tenth of her strength.
I'm sorry to hear that you aren't improving. I hope you will start feeling better real soon! For me, it took along time... I spent almost 3 months on the couch on pain meds, simply dreading each new day. If it wasn't for my kids, I don't know how I would have found the strength to keep going.
I was on 3 different meds for a long, long time ( about 3 years), before I woke up one day and realized I felt healthy and had my energy back. I have been off all meds for over 18 months and am doing fairly well. I don't think I will ever be cured, but I am very happy with 95% improvement.
How long have you been on meds? It can be a long hard road to good health, but it is a road worth traveling. Hang in there, it has to get better
Let me know if I can help in anyway. Thanks again for the message, I appreciate it.
~LymeBrat
Posts: 3154 | From NH , USA | Registered: Oct 2002
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