Nothing specific. No fever or any other obvious symptoms other than
I "feel like I can't do anything".
We've had complaints before in the morning....but I just know.
I know she is herxing. My husband and I have to push through due to work and family.
However, she doesn't. I have to remind myself and my husband
That she is a 6 year old battling a disease that we all struggle with.
She is back in bed. Sleeping.
Just a little insight into my thinking.
She cried at getting up, getting dressed and when asking her Dad if she could stay home.
He said "no"....Since I am the boss, I overrode his decision.
Trust your instincts about your children.
I could cry myself thinking of this incredible little person of mine
Carrying such a big load.
God willing she won't carry it forever.
Thanks for giving me a place to just express myself and
How devestated I am for her. I wish I could carry it for her.
I'd rather be 10x as sick than have her feel that way.
Hugs,
Geneal
Posted by laura j (Member # 14257) on :
My heart goes out to you Geneal.
I know that as sick as I have been, it would be so much harder to watch my daughter go through this and I pray that I never have to.
She has been sick a couple of times this winter and I hope it is just regular winter stuff.
I hope your little one feels better soon and beats this nasty disease.
If she wanted to go back to bed then that's what she needs right now is rest. I can't work anymore b/c I need to rest when I need to rest.
I think that's even more important for a child. On top of trying to heal, she is growing and that takes a lot of energy as well.
Love and Hugs to you and your family!
Laura
Posted by mtree (Member # 14305) on :
Geneal...
I'm so sorry your little one is going through such an awful.....awful disease.
I support you 100% to have her stay home........ just the stress for her alone to feel good......
to have to face all her friends that feel good........sooooooo hard.
my daughter is now 21........she was very ill at age 4..........then again at age 15ish.....
it was very very hard to watch her struggle to feel good to be with her friends.....
we as mothers with this know what they endure each day......it is heartbreaking.
I hope she feels a little better soon....
I'm sure when she feels better she would rather be at school being a "normal" kid then sick at home.
mtree
Posted by merrygirl (Member # 12041) on :
Geneal, I cant even imagine what it is like to have a sick child. It breaks my heart. It really does.
kids should never feel pain. If I could take your childs pain I would. I know you would too.
I hope she gets better soon. I hope we all do. Thinking of you and your family.
Hugs, Melissa
Posted by Geneal (Member # 10375) on :
Thanks. You are such wonderful friends.
I know I couldn't make it without you all.
She is feeling better....with strange complaints of something large
At the bottom of her throat and pain behind her ears.
I am really starting to think babesia in addition to the Lyme.
When it rains it pours.
A little coke helped. So did just getting to stay home.
She is a good girl. I can't imagine what it is like for her.
She hasn't been able to take a nap in school because she says
Her heart is pounding. Keeps her awake.
She comes home exausted.
She always has just enough energy though to pick a fight with her little brother.
Hugs,
Geneal
Posted by TS96 (Member # 14048) on :
Just said a prayer for you and your family Geneal.
Thank you for all your encouragement.
Posted by victoria (Member # 11267) on :
Keep your faith Geneal! I feel so bad when I hear of children going through this horrible disease. Keep us posted and my heart goes out to you and your family.
My prayers,
Victoria
Posted by kam (Member # 3410) on :
Can't imagine what that is like Geneal.
But, glad she was able to stay home and rest today.
Hoping and praying she is doing better soon.
I also get scared inside when I try to do things and it is just so difficult.
I wonder if she feels that way.
I do know rest is the best thing for it.
Posted by Geneal (Member # 10375) on :
Thanks again everybody.
Kam I think it scares me more than it scares her.
Especially complaints of heart racing and stabbing pains in head.
She is better this evening.....I think it was a combo of a mini-herx and extreme fatigue.
My husband again mentioned that we have to push through.....she should to.
Mr former Marine you know.
I told him that she is our little girl dealing so well with a disease
That we don't always do well with either.
I pray for cures for both of my babies.
Hugs,
Geneal
Posted by sometimesdilly (Member # 9982) on :
Geneal-
you know my heart is there with you on this,and i understand 100% of what you are saying.
it is such an odd thing that on one hand my DH and I both agonize a great deal more and more constantly over our 5 year old's having and battling Lyme than we do about my Lyme experience.
And yet,on the other hand,and what makes it odd, is that it IS difficult to remember all of the time that hey, of COURSE he is tired, cranky, emotional, very sensitive to everything, etc. etc. a good chunk of the time, and he is NOT responsible for any of that.
Parenting is such a balancing act in any case-- but it sounds like you are more than equal to the task.
Way to call it, momma. Glad the day off helped.
dilly
Posted by bettyg (Member # 6147) on :
what a wonderful, caring, loving, understanding MOM these kids are blessed to have! best wishes and trust your instincts! Posted by kelmo (Member # 8797) on :
Before my daughter was diagnosed, she was ill with everything in the book. I had never encountered anyone who woke up and said, "my legs hurt so bad today, I can't walk".
How could I know she had something so serious. I would let her stay home for a few days, symptoms would ease up, then I'd push her back to school. I now feel horrible for days I pushed her to go. She was so ill, mentally and physically.
The stress of being behind made her sicker. Teachers and students harrassed her (she was in high school). We needed to remove her from this toxic environment. Then her drama teacher violated her and used the rest of the students to cover it up.
Finally, we had a basket full of diagnoses, enough to satisfy the school to get her some homebound tutoring. At the high school level it's very hard.
At the grade school level, it's much easier. I work at an elementary school and know several kids on homebound due to illness.
If your daughter is too ill to attend school, you might want to check with the administration about what options you have. The doctor doesn't even have to be specific in his note. He just has to recommend her for homebound education due to disabling illness.
Your child has a growing body, and a small body to handle all the pain and toxic crud the treatment brings.
We can push through it as adults, but they don't understand what's going on. They just hurt.
Bless your husband, he's a good man. But, sometimes a mom has a gut feeling that should be heard.
Give your child a gentle hug for me.
Kelmo
Posted by Geneal (Member # 10375) on :
Thanks for all of your wonderfully kind words of support.
I can't explain how much they mean to me.
She is actually doing well in school.
Hasn't missed a day since Sept.
The principal knows....the teacher knows....and the school nurse knows.
The principal is wonderful..She also knows I have a Sp. Ed backround
And told me that anything my child needs they would work with me.
I am just relieved that today her only complaint is one of "feeling shakey".
It just hurts to watch this little person suffer.
It is one of the worst trials I've had....
Hopefully, getting into the new house will help us all to get better.
On a funny note, there is a precious little boy in her class who adores her.
He tries to kiss her (she won't have any of that!).
He tells her he is going to marry her.
I spoke with his Mom and told her that her precious little boy
Was chasing my daughter around to kiss her.
She is such a nice person. She was distressed,
But I told her that I told my daughter to tell
Him "No kisses at school". I went on to tell this Mom
That I also told my daughter how wonderful it is to be loved.
That you can never be loved by too many people.
On Valentines day, my daughter came out to car line carrying this big bag.
In it was a stuffed dog with his tongue hanging out.
It said "Be Mine". This little boy gave it to her.
It absolutely made my day. Can you imagine him bothering his Mom to buy this
Thing for my daughter. Now that is true love.
You all are the very best of the very best.
I am so blessed to have you in my life.
Thank you.
Hugs,
Geneal
Posted by Lymetoo (Member # 743) on :
Little boys at that age are SOOO cute! What happens to them later??
That's really sweet!
I'm so glad she's feeling a bit better and I'm glad you let her stay home. I don't think she'll abuse that privilege!
I had a homebound teacher when I was in high school [twas Lyme...thought it was mono]. It indeed relieved me of some of the pressure.
I was able to get all my work done in only an hour or two a day and was able to rest too!
I do hope your daughter is feeling 100% by this time next year!
Posted by Lime-ade outta Lyme (Member # 14660) on :
special prayers from me and mine to you and yours geneal
regards
J
Posted by bettyg (Member # 6147) on :
geneal, what a 5 star story! how wonderful for your daughter to have gotten this adorable stuffed dog with his tongue hanging out.. BE MINE!
i loved also what you said to her prior about all people need people to love them! thanks for sharing your story.
hope now DD is feeling so much better. Posted by mtree (Member # 14305) on :
geneal........
so glad to hear that your daughter has an admirer..
so cute..... thanks for sharing.....
it must have made her day too......
have a great week......
grateful for this website too!!!! mtree
Posted by AliG (Member # 9734) on :
Geneal,
This breaks my heart to see you going through this anguish. I HATE to know that your babies are suffering, that must be the ABSOLUTE WORST thing a mother can endure.
I am SO sorry that I had been stuck on mono-focus in "medical" and wasn't here for you when you posted this. I STINK!!!
In reading some of the info you posted, I had been wondering if Bart might also be a possibility.???
Another thought that I had last night...
In my DD's school, Valentines Day = SUGAR!!!
Bb LOVES sugar & ferments it into alcohol. (sugar hangover?)
Yeast loves sugar, it feeds on it. (yeast overgrowth?)
I'd suggest some extra probiotics, lots of lemon water, maybe chicken broth (to get extra fluids in), Epsom Salts bath and maybe some vegetable juice. (I love V-8, even though I know I'm supposed to do "organic" . It still makes me feel better sometimes.)
I'll keep you & your babies in my prayers. I hope DD continues to feel better.
Ali
PS - Good job standing up to Mr. Marine! My Dad was one of those and you can tell him from me (if you'd like) that, in my EXPERIENCED opinion, I believe that forcing a sick six year old to "tough it out" and "push through it" at a time when rest is likely necessary, really is not likely to be helpful.
There's plenty of time for toughening up later in life. She'll gain enough strength just having to deal with the ups & downs of her illness & recovery. It would be different if it were a cold. (my opinion again)
Yes, I'm sure that everyone should at some point in their life "toughen up", but at 6 yrs old??!!!!!
You are a wonderful person & I'm sure an excellent mother. I believe that maternal instincts exist for a reason. I am glad for your children that you follow yours!
No matter how "tough" people get, we ALL still need a little love & nurturing from time to time. Your children are very fortunate to have a mother like you! ((((((((((((great big hugs))))))))))
You can also let him know that, in light of this realization, I am now blaming MY former-marine father for the fact that I kept trying to tough out my illness for many, MANY years without getting help & for feeling like a failure every time I crashed because I just couldn't physically take any more self-imposed abuse and neglect.
My refusal to give up did get me through a lot of difficult times & enable me to accomplish a lot of things that I likely wouldn't have otherwise. I am paying a price for it now.
IMO, she does need to know that rest is necessary, at times, when trying to recover from a serious illness or she may end up fighting relapses by trying to just tough them out through the power of her mind & feeling a failure when she can't because it IS physically impossible to do without sufficient rest.
I'm sorry for rambling. I guess this touched a nerve.
Please just KEEP ON BEING YOU and following your instincts & your children will be just fine!!!
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mtree
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Glad the day off helped. ![[group hug]](graemlins/grouphug.gif)
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. It still makes me feel better sometimes.)