Re: Looking to plan a Lyme parents' gathering

[Guest guest]

I need to be with parents that understand .... my husband just told my 12 yr

daughter that's he is taking her to school in the morning,and she has to

go....this poor girl has only been able to make it about five days this school

year...I am so sick of living with someone who refuses to understand .... wish

we could pack up and leave... ugggg. Sorry....bless you all!!

Diane

On Sun Feb 13th, 2011 8:33 PM CST jchabot wrote:

>I don't know where that is in MA, but I live in Ct and would be willing to go

>

>Hugs

>judy

>

>

>

[Guest guest]

I feel the same way about my husband, he thinks im making michael into a

hypochondriac..

>I don't know where that is in MA, but I live in Ct and would be willing to go

>

>Hugs

>judy

>

>

>

[Guest guest]

If these kids were doxed with cancer and going though cancer treatment would we

or them be treated this way?

In my opinion - not much different.....both are pretty sick with

treatment............

these kids are sick........fighting for their life!!    

Hypochondriac.......ha

- if these people only knew what this disease truly does to the body!!  If they

had it for one minute they would be running to the doctor thinking they were

dying!!

Hang in there.......this disease causes much abuse on many levels.  Even from

the ones who should be these kids heros!! 

Its comforting that I am not alone - and its terrible that any of us have to

live like this!!

love to all - we will make it - we are doing right by our children and that is

all that matters....they are the ones who will be able to live a " normal " life

and that is what this is all about.......

Diane

________________________________

From: Tiffanie <tiffanies_towing@...>

Sent: Tue, February 15, 2011 8:57:11 AM

Subject: Re: [ ] Looking to plan a Lyme parents' gathering

 

I feel the same way about my husband, he thinks im making michael into a

hypochondriac..

>I don't know where that is in MA, but I live in Ct and would be willing to go

>

>Hugs

>judy

>

>

>

[Guest guest]

Although... I have to say that my daughter was sick from birth, though she only

got completely sick right after she turned 8 and then sort of improved on her

own until tanking at age 10 1/2. I don't have a husband who is not on board.

But both of us were pushing her because we did not understand what she had, and

it CAN look like malingering or hypochondria. What I mean by that is that she

seemed not to have energy but would rally when, as we saw it, it was something

she wanted to do. So we couldn't get a read on how sick she was. It is so

strange to see a child with no energy, that we thought she was being lazy or not

trying. She was always telling us strange symptoms and I seriously started to

ignore her, because it seemed like everything that happened in her body was

cause for her to report to me. Since we had been told she was fine and that

everything was residual, it was hard to get behind her constant comments bout

her health.

Now, of course, I will never forgive myself for yelling at her anxiously that

she had to TRY. She was diagnosed with fibromyalgia at age 11 and Lyme and

coinfections at age 12. It all makes sense, retrospectively. But I am putting

myself in the shoes of the dads who really just want their kids to be better. I

am sorry to have to admit that more than once I have overloaded on my daughter's

illness and told her she just has to try arder to get well. Totally

unproductive, I know, but it's terrifying to watch your child be sick day after

day and be unable tohelp. Also, the fact that one morning or one day can be

good and then they get worse again is hard -- the constant raising and dashing

of hope.

So while I do think they need to get on board, for those who are struggling to

understand and are expressing frustration, I understand them

Another perspective.

Forgot to mention that all four of us have Lyme. Littler child had it for years

and it so affected her nervous system that she almost didn't feel pain. The

opposite of her sister. But she could not think well and has aDHD. Ugh.

________________________________

From: Diane Biel <dkbmama@...>

Sent: Tue, February 15, 2011 7:13:25 AM

Subject: Re: [ ] Looking to plan a Lyme parents' gathering

If these kids were doxed with cancer and going though cancer treatment would we

or them be treated this way?

In my opinion - not much different.....both are pretty sick with

treatment............

these kids are sick........fighting for their life!! Hypochondriac.......ha

- if these people only knew what this disease truly does to the body!! If they

had it for one minute they would be running to the doctor thinking they were

dying!!

Hang in there.......this disease causes much abuse on many levels. Even from

the ones who should be these kids heros!!

Its comforting that I am not alone - and its terrible that any of us have to

live like this!!

love to all - we will make it - we are doing right by our children and that is

all that matters....they are the ones who will be able to live a " normal " life

and that is what this is all about.......

Diane

________________________________

From: Tiffanie <tiffanies_towing@...>

Sent: Tue, February 15, 2011 8:57:11 AM

Subject: Re: [ ] Looking to plan a Lyme parents' gathering

I feel the same way about my husband, he thinks im making michael into a

hypochondriac..

>I don't know where that is in MA, but I live in Ct and would be willing to go

>

>Hugs

>judy

>

>

>