i've talked to family. talked to friends. to see if someone would help me out with costs of LLMD and treatments. and for some support.
well, not only will they not help, but they are completely unsupportive of a decision to pursuit this.
my folks say that ID docs told that the lyme is a thing of the past. it was dealt long ago and it's gone.
if anything, they say i should go back to ID.
i'm told that i'm just saying this for attention and because i want to find some excuse not to have to grow up and become a 'normal' adult and move on with my life.
i tried referring them to some literature, but it's all falling on deaf ears.
everyone thinks that they know better than me whats goin on with my body.
so there's no support here - not monetary nor emotional.
so i'm stuck. don't know what to do.
is it possible for a 22 year old to do this all alone? with no money, interviewing for jobs now, trying to make the transition from college-student to adult-out-on-my-own. AND dealing with all this.
i can't even begin to describe how alone and hopeless/helpless i feel now. i feel like ignoring it all. pretending like i never knew it was an issue. just plug on with my life until it resolves itself - either it kills me, or my body will kill it.
but the fighter in me doesn't like that plan.
i'm so tired of this. i don't know what to do.
any suggestions?
i read thru the links on the money issue here. most of the suggestions don't pertain to my situation. also, it's not just an issue of money here - though that is HUGE. it's also an issue of lack of support and understanding among people who i'll need support and understanding from.
Posts: 34 | From Airmont NY | Registered: May 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi fighter,
Sorry you are going through this. It is not uncommon. I have been treating myself because I could no longer afford an LLMD. It actually has been very empowering.
Parasites and Worms play a Major part in Lyme disease and you may want to look into that. Check out the symptom list at
You can research a lot of alternative health options that are inexpensive. Hope this helps some,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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would be great if someone in your area has this dvd to loan you to sit down with your closest family to try to TEACH them, and they can see for themselves?
where are you living?
WE here on the board can become strong support for you since we're walking in your shoes; WE UNDERSTAND and can share advise, education, and a shoulder to cry on when necessary ok!
you're new so you never saw my former newbie package of links; i'll copy 3 things from there dealing with FAMILY SUPPORT!!
LYMEDAD'S LETTER TO FAMILIES OF LYME PATIENTS...OUTSTANDING! PRINT & GIVE TO FAMILY MEMBERS!!
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").
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., etc., 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
DAR'S 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!!! Lymetoo/TUTU posted 5-11-07 *********************************************
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'm all done sleeping.
So now you know how I feel, but you don't 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, Alzheimer's, 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's 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't explain what it's 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's 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's that ole tractor that once had a bucket on the front and a back-hoe on the back, but somehow they're 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.
Johnny's 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's all the good ones that are played with right away. All the ones that have parts missing (That's all of US!).... Well, nobody plays with them because they're defective. They can't roll because the wheels are missing and parts are long since gone.
But they are still toys that the kids got and don't 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're not ``whole'' anymore.
But we still get to be with all of you and get to watch and see what's going on! And then there's lots of times we never get out of the toy box. There's days on end that we just sit on the bottom of the toy box, because we can't do the things that we once could, and nobody needs us anymore.
Then it's back in the closet and the door is shut, and it's dark once more in our lives. Not that we're not alive, we just can't 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 y'all are doing all over again.
We know we have parts missing and can't roll with the good toys. We know we'll 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't 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 y'all do. We just know that we can't do that anymore.
We used to be able to run with you too, but somehow got some parts missing and we're `Stay at Home Dars All Day Long', like my new Lyme song goes. We've 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's just what has happened to some of us, and tonight it's back in the toy box and into the dark closet.
There may be a cure for some of us, but it's 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't 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's 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're dependent on everyone else to help us out of the toy box and back in again in the dark closet. You can't 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's all we have left! We really appreciate all the things all of the good toys do for us and hope they all understand it's 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's like being us. Up until last night, I didn't know how to put it either. But somehow I think I got it right now. It's 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't 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'm just glad I can do what little I still can. Like the ole saying goes, we don't have to look too far away to find someone that would gladly trade places with us.
Be glad what you do have! There's a lot of people worse off!
Written by Darwin Schmitz, Texas Dar & Pure Country Band.... edited .3.15.08 per Darwin's request
PS..Dar has enjoyed the thank yous from all over the world!
posted
So sorry for those that don't have support. I didn't my first go around with this disease. Thankfully I do this time around which makes a world of difference. The movie "Under our Skin." Has helped tremendously with informing my family about the seriousness of this disease. Please show it too your family if you can.
Take Care, Ann
P.S. Why would anyone choose to be sick. That's like someone choosing to be gay...Doesn't make any sense. We really do have better things we could be doing rather then taking meds and visitng doctors!
-------------------- If you keep doing nothing...nothing changes!
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I'm sorry that you are having such a rough time.
You can come here anytime for support.
I will pray that you find the treatment and support that you need.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
You might not ever find the support you need from friends and family. It is just the horrible nature of this disease. Some people have families that understand and some do not.
I'm pretty disappointed with the response I've gotten and now I just don't bother with them or try to convince them.
Posts: 743 | From New York | Registered: Apr 2009
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I feel for you. John's right. Some families understand and some do not.
Yes you can work to help them understand. That may happen quickly, maybe take a long time, or maybe not at all.
Sorry, that's reality.
Fact is, you do know that you are sick. Don't doubt that you need to do something about it, no matter how much help and support you get.
You are finishing college, if I understand you correctly.
My advice is to continue to work to toward getting a job that's got good benefits. (You'll want Rx benefits, for sure.)
I'm familiar with the area you're in, and I think it's a commuter location. Try to look for as short a commute as possible. That will make a difference for you.
Try to get something that has nice people and a nice supervisor to work with. A low stress environment is worth more to you right now than big money.
As for being an "adult-out-on-your-own" , maybe you can live with parents or an aunt or something for awhile.
It will be better for you financially, but also there is less stress in being under someone else's wing, so to speak.
And of course, get yourself a good llmd, there should be a few not too far from you.
I don't know if these suggestions are helpful.
I'm just trying to give you some practical advice.
Good Luck,
Carly. Posts: 797 | From New York | Registered: Feb 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Follow your heart and not what others who are ignorant about lyme tell you to do!
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