posted
After rounds of doctor's visits (not LL) and no real diagnoses, you still insist going further to take more tests (like Igenex), and then your family thinks you are just making all this up and become obsessive and insane!
When this happens, what holds you on? Financial burden, physical illness, mental torture and misunderstanding from family members, especially the one that's so important to you....
What will you do?
Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007
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posted
For me it is God and my wife. The rest of my family thinks its anxiety that is making me ill. Oh you worry too much and that is making you sick, they say......
I did keep pushing for more tests, and finally went to a llmd after 2 years of no dx and tested pos through igenex for ld.
Another thing that helps is to come to this site and read everyday, you then see others going through the same thing.
Good luck, Rich
Posts: 413 | From nj | Registered: Nov 2005
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I was told that my illness was in my imagination by a relative. I would think, why would someone who was living a full life before becoming ill, make something like this up? My story gets even more bizarre and complicated. But I simply want to say this...
No one else can enter your body. Only you know what feels normal and what does not feel normal. Believe in yourself and what you know to be true. And then take appropriate action.
Claire Posts: 1111 | From Colorado | Registered: Oct 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Yeah, I know how that goes, for years I was the family nutcase.
Even doctors in the ER told my hubby I was a little nuts. It's funny how doctors/people can make fun of a person with anxiety, but they would not dare make fun of a person in a wheelchair.
The only thing that has really gotten me through it was my faith in God. Somewhere deep inside I knew something was wrong with me, but I didn't know then I had lyme babesia and mycoplasma.
Posts: 6639 | From Michigan | Registered: Jun 2001
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posted
Don't try to make sense of anything. My friends are the same way. My family is not as bad because my mother has fibro.
Never try to talk sense into a fool.
And many people have strong opinions on things they don't know about. It a defensive mechanism to not look stupid. You'll find this especially when someone is ignorant about something in their field(medicine).
I have a few doctors who are understanding and a few who aren't.
-------------------- Never walk through a cornfield backwards.
posted
I know how you feel. You almsot just tell yourself that oh well I just woke up one day and decided to hurt all over and take to watching tv all the time.
Yep, just thow pooping in pants for a little extra show; lol.
I am so frustrated. With Life period.
Posts: 347 | From WV | Registered: Jan 2007
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posted
It is very discouraging. My family knows how outgoing I have always been and that when I come home from work and go to bed - there is something wrong and its not just that I am crazy. But I know they have to wonder since I haven't gotten a positive test and here in Indiana there are no lyme doctors to go to. I at least have a spot on my leg to show Im not totally nuts - whatever it is - this is where it started. Ive only been this way since May and I am already so tired of the stabbing pains, the aches and feeling like I have been run over by a truck - my heart goes out these people on here who have had it for years...I just keep praying that I do not have to endure it that long. Good luck to you, just know you are not alone - and all of us on here that are dealing with it do understand even when outsiders can't possibly.
Posts: 32 | From INDIANA | Registered: Sep 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Justag
I am so sorry your family doesn't understand
After 20 years of lyme much of my family doesn't get it either & many of my friends that are well don't get it either.
It can feel isolating at times . Being here on lymenet is so important to me because sometimes unless you live it regular people can't begin to understand it.
People here live it & do understand this disease & all it take takes to make it threw it
so stay close in touch here. We do understand.
You are not alone.
Have you found a LLMD yet? If not please psot a post of what state you are in & maybe someone can give you a pm about some LLMD near you.
hang in there Hugs & healing
Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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quote:Originally posted by Kendrick: Never try to talk sense into a fool.
So true. Save your breath!
KKYOUNG...are you being treated???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
[QUOTE]Originally posted by justag:
When this happens, what holds you on? Financial burden, physical illness, mental torture and misunderstanding from family members, especially the one that's so important to you....[/ QUOTE]
sometimes when it is your spouse or significant other, you need to stay away from them since they are generating so much NEGATIVITY! you tell them, do not discuss this with me as it will cause additional friction and comments that neigher of us can take back once said.
yes, lymenet is YOUR lifeline; we are walking in your shoes, and offer much personal advise of what has worked/NOT worked!
my sister commented to my husband shortly before her death from advanced bresat cancer in liver, "the family thinks it's all in HER HEAD"!
ANYONE suffering like her from the 24/7 pain, should have understood and been supportive. i never knew of this comment until months and year down the road.
i stay away from my family of 3 bro. siblings left. went to xmas last year after 3 yrs; not changed at all.
be around POSITIVE, SUPPORTIVE folks only.
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posted
Sadly, I have to stay away from my mom and sisters. Not only are they unsupportive, but they're also just plain RUDE! I've never seen them treat strangers as badly as they treat me. I just stay away.
KKYoung, I hope you're getting treated. I live in Ohio and fly to NY for treatment. I believe I've heard that there's also an LLMD in Missouri ... someone here might be able to verify that. I used to live in Bloomington, and St. Louis isn't that long of a drive from there ... only three or four hours.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My cousin says im a hypochondriac (she's a lucky girl who use to do drugs, drinks beer like a fish, smokes like a chimney and is healthy and energetic). She told me i need to go get some Self-help books.
My uncle says (regarding my cfs diagnosis), "HAHAHA...I must have that too cause im tired!"
My ******* of an uncle looked at my Living with Lyme book and crossed off the Ly in lyme and told me I have an ALL ABOUT ME disease and that i just want attention.
I think we all get this kinda crap...even if they dont have the nerve to say it. Sometimes i dont blame them cause i am barely understanding this disease..how can i expect others to. I mean most of our own doctors dont even believe us.
I hold on for my kids.
Posts: 160 | From california | Registered: Dec 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
this is one of the hardest things. i have lost friends too.
use this site and find local support groups for support
educate yourself...trust yourself...take care of you
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
This may sound silly, but when I feel the rest of the world is against me, I crawl into bed with my two little doggies.
They will always cuddle with me with no judgement or anything other thatn unconditional love!!
Also I notice when I'm really sick my one dog, Oliver won't leave my side. I'm convinced he can sense it.
IN fact this might sound weird but one time I was crying and Oliver licked my face and all I could think was, is there Lyme in tears? Could he get it that way. Scared me to death!
posted
Someday they will be old and sick.....you can tell them you pray they will recieve the help and understanding in their time of need they are denying you in yours.In the mean time we here understand and seek out quality people that have heart and soul.Take Care...RG
Posts: 140 | From Texas | Registered: May 2006
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posted
as aweful as this kind of treatment is.. it really is. [i would guess if a friend or family member came to you and said they had purple-hairy spot disease, you would support them]
..in any event it is you who are responsible for your own health and welfare [and that of those you are responsible for, if you have children].
at the end of the day, anyone who is NOT supportive is a drain at a time you cannot afford to be drained in any way.
make a statement as to your priorities and disassociate with anyone who is not supporting your quest for answers and appriopriate evaluations and care.
let them know this, let them know why [you owe that to yourself] and be prepared to immediately move on.
tell them you simply cannot afford the energy it takes to lobby for their support.
as you move on, those who are true to you will support you, because they will understand this from you, even if they do not understand your health condition.
those who do not will likely be nothing less than a drain on you at best over time - and you cannot allow others to effect you in this way.
be strong, state your focus and follow through.
really, you need/deserve/require nothing less than full support right now.
people reserve the right to act like a$$holes at times, and they will excersise that right..
you have to let them have that, just don't let that steal anything from you right now.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Okay so you've touched upon one of those sore subjects. I'm a parent of a young lady who has suffered from the effects of Lyme for over 6 years now.
I've heard every possible input from family members;
She's just lazy - It's all in her head - She doesn't look sick - It's those pills she takes that makes her weird - You need to be more strict with her etc. etc. etc.
I have grown extremely tired of members of our family and so-called friends judging her condition. I have finally slammed the hammer down on this subject.
I've told everyone in our extended family and anyone else who wants to listen;
If you can't find it in your heart to accept the fact that my daughter is very ill or if you think you need to offer advice to her or us
STAY OUT OF OUR LIVES !!!
As you can imagine I'm not the most popular person in the family, but quite frankly I just don't have the time or energy to worry about how others feel.
So here's my fatherly advice; you need to concentrate on only one thing at this point in your life - your health.
Anything that detracts from your attempts to get a handle on this disease, you need to erase from you mind and your life.
If they truly love you they'll come to their senses, but hey if they don't at least you'll know who really cares and who doesn't.
I've now slowly climbing down from my soapbox and I will sign off for now, I'm out of breath (I'm really old or at least I feel like it and I'm not the one who is sick).
Be well and be strong - I made a sign for my daughter's bedroom, use it if you like,
quote:"The Will of God will never take you, where the Grace of God won't protect you".
LymeDad
Posts: 681 | From California | Registered: Oct 2005
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mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
lymedad and mo; good job you 2 !!
dad, i love the sign you made for your precious daughter, and you put your extended family in their place!
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
I often wonder why people choose to be hurtful when they can't be helpful? Are they frustrated?
The world was flat once too!
Yes, this can be a truly lonely disease.
Posts: 4258 | From over there | Registered: Jul 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Simply respond, "I know my own body and I know something is very wrong."
Years ago, a man named Don, authored a website on lyme called Cassia.
Here is the reason why he chose that name for his website:
"Information about the organization name, Cassia: The organization name, Cassia, has this origin: Cassia is a plant of Biblical reference (Exodus 30:24, Psalm 45:8, and Ezekiel 27:19) -- one of the ingredients of anointing oil.
It is historically known to be a plant who's fragrance is released through it's crushing.
As a type, it symbolizes any life that releases a sweet fragrance through it's crushings -- otherwise spoken of as life's adversities.
As one example, in other words,
if my adversity and experience of Lyme serves to cause a releasing of information that helps any number of others,
then the net effect of this "crushing" has been the release of a sweet fragrance of benefit for the lives of others.
In a broader and Biblical sense, Cassia, in it's use, represents the Messiah (or Christ), my Lord; whose life was clearly spoken of long beforehand to be crushed entirely for the sake of mankind."
posted
"Never try to talk sense into a fool." I don't get it. I'm not a fool, but I do have lyme, and I can't make sense out of this statement. Do you mean , like, pour milk into an upside down glass? or change a leopards spots? ( do leopards have spots?)or you can't turn a pickle back into a cucumber? One simple sentence-and I can't process it.
Anyway-I relate to this topic so much-that I have chosen to live alone-I didn't think I would ever make headway with this disease in a home where my family sees me as "crazy and lazy".
I told them I haven't given up on myself-but the next time they put me down I'll just shake my head and say "Guess I'll stop trying to talk sense into a fool" Sounds good-maybe they'll understand it. Carol
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
In my family, I've been dubbed the hypochondriac (sp?)!
However, as my little sister said to me "You always manage to pull a disease or disorder that fits your symptoms".
I have to admit that before having Lyme, I had NO idea how sick or how all encompassing this disease can be.
I knew it was a tick born vector....but really nothing else.
Boy have my eyes been opened.
I don't think people can relate to how Lyme makes you feel. I thought I was dying and my family told me that it was my attitude.
hurt all over, running fever, massive headaches, etc, etc, etc.
I don't expect my family to understand.....they don't seem to want to (except my Mom who is an Angel).
They don't even ask how I feel anymore. Sometimes that makes me sad.
I guess since being dx with Lyme, I can honestly say who are my friends.
Other than my Mom and my neighbor, who has Lyme also, the only other real friends I have are on this board.
Thank you all for being my friend.
Seperate the negative ones out (they still manage to get through every once in a while).
Surround yourself with the positive.
For me this has been a life changing experience, both spiritually, physically and emotionally.
I just wish my family would have taken enough interest to even look Lyme up on the internet.
Hang in there. Here, you are never alone.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Sizzled wonders:
"I often wonder why people choose to be hurtful when they can't be helpful? Are they frustrated?"
What I noticed when I was extremely ill is that it was the people who had a lot of their own internal negativities or low self-esteem that made the most hurtful comments. And somehow, it was as if my predicament made some of them feel better about themselves (by comparison?). What can anyone do with that?! Pretty horrid.
Sometimes we do have to separate. It is the worst thing to come to, especially if it is a close family member. But it is about self-preservation. We are already weak and vulnerable, and in this state I think we are even more susceptible to the energies of those around us. We need to set some boundaries (sometimes) and we DO NEED to be around positive influences.
Facing a dilemna now, with someone in my life 'getting on in their years' who seems 'upset' that I never come to visit. Trying to see if I can summon up enough strength to forgive and visit. Forgiveness -- another dilemna to overcome.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
people are so easily mislead by ...'doctors'...(yeah, :PUKE RIGHT), that mis-diagnose and deny! And there's all this "built-in" respect for these ducks that causes people close to you not to trust you; not to believe what you're saying.
Look upon it as an illness; but remember, since the typical denial is almost assured, you'll probably have to keep that to yourself... Consider yourself very lucky, for their illness is even harder to cure than "Lyme etc".!
DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Another good thought, Dave. Judgmental behavior sometimes does seem like an illness that is 'more difficult to cure than Lyme.' It is the main underlying theme of a fiction book I have been trying to write for the longest time (a subject that has preoccupied me since I was little). Not sure if it will ever be completed though. But great therapy at least!
Claire
[ 22. February 2007, 01:47 PM: Message edited by: clairenotes ]
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
You know I must say I have had a different reaction. I know my husband and kids are tired of me being tired, but my friends, neighbors and family think I have just this awful disease and they cant believe I am not being treated immediately.
My mom said "they are going to wait until your joints are deteriorated if they dont do something".
It is strange because if you get a diagnosis of Cancer then immediately they start doing something but with this they start by trying to say well all the test must be wrong.
Posts: 347 | From WV | Registered: Jan 2007
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posted
Even when you THINK they've gotten it, when you're sick of defending the thing that has taken your life away from you--
One of them will say:
"you need to just get away from it all for a while"
To where???? I've stopped praying for death because it hasn't worked.
I ask God why and he (she) says "you just have to pull it out, Lynne, and that's all."
It is my own inner strength that gets me through. It keeps me isolated from the rest of the world (except you guys) but it's what I have left after I've explained, and complained, and then abstained.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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