MDJunction - People Helping People
 
Ask a Question
06/24/2007 01:09 PM

Dar's TOY story; Lymedad's support story; KEEPERS

Bettyg
 
Posts: 33642
VIP Member
I'm an Advocate

EDITED 3-15-08

go to bottom of post; I received a note from Texas Dar today; his comments are attached and a correction to his misspelled last name and his band's name....Bettyg

nadina, can you make this a feature also? both stories can be used by lymies to educate their families/friends/co-workers what it's like to have lyme or another chronic disease where "we look good!"

thank you nadina! betty

NOTE: both have given permission for anyone to use their letters as educational tools!! BG

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

LYMEDADS LETTER TO FAMILIES OF LYME PATIENTS...OUTSTANDING! PRINT & GIVE TO FAMILY MEMBERS!!

Author Topic: Open Letter to Families of Lyme

lymedad

Frequent Contributor

Member # 8074

posted 20-04-2007 03:52 PM

Dear Family of a Lyme Disease patient,

I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.

I am one of you.

For more than 6 years my daughter has suffered through this ugly, dark disease.

She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).

She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting time of her life.

We have taken her to every known medical specialist in southern California as well as three different General Practioners.

She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).

For the first 4 years of her struggle, I was not a good parent, even though I thought I was.

My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".

I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me"Wink.

Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.

You can't possibly be this ill and not have something tangible to show for your symptoms.

You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.

Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.

That's the way I approached her illness. It's time you took control of your illness and will yourself well.

I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.

My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.

Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc.

If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.

I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.

Hey they just can't help the way this disease treats them. It's not their fault.

We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.

They need our understanding.

If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.

Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.

We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.

My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.

She certainly doesn't need someone who claims to love her causing her any more pain than she has already.

Families. from one who has been in your shoes, please let them know you love them.

Let them know you're there to help them.

Let them know that there's no way you can possibly understand their pain, but that you wil try to understand their illness.

I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.

I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.

I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.

Sincerely,

LymeDad

---------------------------

DARS TOY STORY;

outstanding for family, friends, etc!

This was written by a friend of mine. He asked me to post it here. We hope you like it!!!

The last essay I did was how I feel having Lyme disease and all the other things I have wrong going on inside me. Last night I was awake at 3 a.m. and once my mind gets going, I am all done sleeping.

So now you know how I feel, but you don not know how we feel looking back at all of you who are healthy. All of us who have immune-compromising diseases such as Lyme, Crohns, CFS, ALS, Alzheimers, MS, non Hodgkins lymphoma, muscular dystrophy, bipolar disease or any other chronic illness.

People with chronic illness face two hurdles. One is the illness itself, and the other is the perception others have of them because they are ill. The illness becomes their identity, essentially making them faceless.

People have no clue what it is like to be us! Well, now you will. See, all of us with something broken have been taken out of the real world, or the working world and we just can not explain what it is like.

Well, imagine for a moment that all of us are toys lying on the living room floor. The toy box is next to the kids bedroom doorway. Mom and Dad say, OK, kids, pick up all your toys and get them into the toy box and back into the closet. It is time for bed!

OK and in go all the new toys from Christmas and birthdays past. (That would be all of YOU!) Along with the newer toys goes a truck with the front tires missing, a car with the doors off, a matchbox car that has no hood, a 56 T-Bird without the top on it, and the trunk is missing.

Then there is that ole tractor that once had a bucket on the front and a back-hoe on the back, but somehow they âre gone and and broken off.

Susie loved that doll, but over time her head got broken off and one arm was missing. GI Joe has seen better days, because his left arm and his right leg have come up missing.

Johnnys plastic train with 9 cars was the best thing last Christmas, but 3 cars are missing and the caboose has no wheels. Now when the toys come back out another day and get dumped on the floor, there âre all the good ones that are played with right away. All the ones that have parts missing (Thats all of US!). Well, nobody plays with them because they âre defective. They can not roll because the wheels are missing and parts are long since gone.

But they are still toys that the kids got and do not have the heart to throw away. So even though we get to come out and sit on the floor, nobody plays with us because we âre not whole anymore.

But we still get to be with all of you and get to watch and see what is going on! And then there âre lots of times we never get out of the toy box. There âre days on end that we just sit on the bottom of the toy box, because we can not do the things that we once could, and nobody needs us anymore.

Then it is back in the closet and the door is shut, and it is dark once more in our lives. Not that we âre not alive, we just can not fit in anymore and have to wait till everyone comes back from the real world and lets us out from the dark closet and we just sit on the floor and get to see what you all are doing all over again.

We know we have parts missing and can not roll with the good toys. We know we will never fit in with all the toys that have all their parts and are newer and shinier and we expect that.

Thank you for not throwing us away though, even though we can not compete with the new toys. Some of us do better than others. Those with only one wheel missing get around better than the ones with all the tires missing.

And we have gotten used to the dark closet when all of you get to go out in the world and do whatever you all do. We just know that we can not do that anymore.

We used to be able to run with you too, but somehow got some parts missing and we âre Stay at Home Dars All Day Long, like my new Lyme song goes. We have even got used to watching all of the good toys go roaring up and down the carpet, and some of you even get to go outside and play in the sandbox too.

But we have to just stay where we are because that is just what has happened to some of us, and tonight it is back in the toy box and into the dark closet.

There may be a cure for some of us, but it is hard to get the big companies to send those few little parts, like hoods, trunks, wheels, heads, arms, legs, and missing eyes. They are just too busy to take time for such little things like that.

We accept that too. And if you look at us just right, you can not even see there are parts missing and you think we should be able to come out and play.

It looks like we should be able to keep up with all the good toys, but it is so hard being stuck in this old broken frame, knowing we once were part of the big picture and had something to offer, and could go places.

But no, we âre dependent on everyone else to help us out of the toy box and back in again in the dark closet. You can not imagine how lonely it gets in there, day after day, all alone, knowing that all the healthy toys get to go out and play.

What makes us feel good though is to hear stories of how we would rip up and down the hallway and across the family room and into the kitchen. Or how much sand we could dig on a good day in the sand box.

Those are called memories and all of us broken toys have lots of them, because that is all we have left! We really appreciate all the things all of the good toys do for us and hope they all understand it is not our fault. We just got stuck with weak or broken parts!

Hopefully my broken-toy story will help all of you understand what it is like being us. Up until last night, I did not know how to put it either. But somehow I think I got it right now. It is just the way I feel, stuck at home trying to do the best I can with what little parts I have left.

I once had big dreams of being a real country music star, with my songs on the radio, and the videos on TV. You can plan your career, plot the success ladder all you want, but you can not count on your health to be there for you.

Not everyone gets to stay healthy. There are a lot bigger guys than me that were taken to their knees by a health problem and taken out of the game. I âm just glad I can do what little I still can. Like the ole saying goes, we don not have to look too far away to find someone that would gladly trade places with us.

Be glad what you do have! There are a lot of people worse off!

Written by Darwin Schmitz,

Texas Dar & Pure Country Band

edited .3.15.08 per Darwins request; last name corrected and all of the band's full name!

my pc wouldn't show 's so changed wording so it is readable.

Bettyg

http://profile.myspace.com/index.cfm? fuseaction=user.viewprofile&friendid=170506428

ps...A note I received from Texas Darwin today, 3.15.08

"As long as my name is misspelled, you can change it for me.

Darwin Schmitz, also, lets put it Texas Dar & Pure Country Band, as long as so many people are reading it from around the world.

I never knew I would get so many e-mails from everywhere thanking me.

That's why I gave away my copyrights, and told Gayle/LYMETOO, just make sure my name, e-address, and Entertainer name is at the bottom.

The thank yous I've gotten is already paid for the time writing it. Maybe I will check back in one of these days.

They (his family/friends) made me feel like a "Heel", for saying everything wrong. Hope this note finds you with a smile......! Tex"

Post edited by: Bettyg, at: 03/15/2008 16:58

Post edited by: Bettyg, at: 09/13/2013 12:17 AM

Post edited by: Bettyg, at: 09/13/2013 12:27 AM

Post edited by: Bettyg, at: 09/13/2013 12:34 AM

Reply

06/24/2007 10:57 PM
Nadina
Nadina  
Posts: 111
Member

Done, Betty. Thank you - this is a great aid in education, identifying and relating, just what a support group really is about.

06/25/2007 12:53 AM
Bettyg
 
Posts: 33642
VIP Member
I'm an Advocate

nadina,

thanks so much for making those 2 features.

fyi, lymenet.org went back up at midnight so you won't be seeing me daily as you have this past week when the lightning hit our equipment. nothing personal to the board/members! Cool

Post edited by: Bettyg, at: 03/15/2008 17:00


06/25/2007 12:58 AM
Nadina
Nadina  
Posts: 111
Member

I knew this is only temporary, but we enjoyed your daily presence and the value you've brought.

Drop by sometime, please Smile (as you always have).

Thanks for everything.Kissing


06/25/2007 08:33 AM
Bettyg
 
Posts: 33642
VIP Member
I'm an Advocate

nadina,

YOU/board members are most welcome!

i'm keeping ALON busy with quirks in the system to be worked out making your site more user-friendly; right Alon? lol Kissing

various posts i started or added to, i left it as SUBSCRIBED so if there are comments, and i have things to add, i will!

if i think of other things i think mdjct should have, i'll be back to add them.

will you add NP40/MIKE's latest email on wisc.'s dr. hoffman i sent you early this am? thx Nadina! Kissing

Post edited by: Bettyg, at: 03/15/2008 17:01


12/21/2007 03:35 PM
Jenn56
Jenn56  
Posts: 452
Member

I have 2 say i red this and cryed,I am giving all my familt members a copy of this 4 xmas.. JENN

12/21/2007 09:48 PM
Bettyg
 
Posts: 33642
VIP Member
I'm an Advocate

jenn,

aren't they both great? yes, email them to family/friends who you are trying to get thru to them to GET IT; what it's like to have chronic lyme disease.

Merry Christmas and have a HAPPY AND HEALTHIER 08 !!

Post edited by: Bettyg, at: 10/30/2012 12:32 AM


01/07/2008 04:00 PM
boojam
boojam  
Posts: 11
Member

read my song, i think it will spell out lyme

01/10/2008 12:12 PM
boojam66
boojam66Posts: 3
Member

Hug

MY SONG TRACK 3 on my upcoming cd

I live in the woods /and bye your family.

Better yet a body/you can barely see.

Im out to give you/a sicking bite.

One body,pills/and the doctors cant fight.

favorite part is/when i see you in pain.

And hopefully i can even/infect your brain.

tick tick tick tick booooooom''''''''''

Ive bit enough people/ to build 100 towers.

Your government wont even/recognize my powers.

Great news for me/they dont battle back.

leaves me more bodies/to bite and stack.

tick tick tick boooooooom''''''''

aaaw poor baby/getting to sick to live.

stick around longer/got more pain to give.

hopefully bye now your lifes/torn all apart.

this is when i like to/slip inside your heart.

tick tick tick tick booooooooom'''''

pathetic human being treatments/draining all your money.

I made you a terrible mate /for your little honey.

my job is done now/ poor sick and in pain.

and i hope society/ thinks your insane.

haaa haaa booooooooooooooom.

my song and eyes through a tick.

i write songs, i think i lymed out on this one.


09/28/2008 04:18 PM
Jenn56
Jenn56  
Posts: 452
Member

Hey this was the post that i wanted u guys to check out,,I think all family and friends should have a copy,,,JENN
Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved