I have been sick for a very long time(18+ years). I have a temp diagnosis of Lyme, to be confirmed by LLMD 2/13/09.
My family is great and I love them all very much. I have to say though that if one more person tells me to just "think it away" I think I will lose it!
I know I have been complaining for many years now and I am sure its getting old, but I feel like they don't believe me. I feel like I am a burden to them sometimes and to be honest I don't complain nearly as much as I could given the way I feel on a daily basis!
Everyday I get up and take care of a disabled child (21 months old) with MANY medical problems including O2 24/7, significant cognitive delays, endless ear infections, surgeries this list is endless.
I also have 2 other children that are "normal" as eveyone calls them who I have to get ready for school, cook supper, clean do laundry and I work 30 hours per week, all while being ETREMELY ILL.
I guess what I am wondering is, has anyone else had this same lack in support? Could it just be that they don't understand?
To be honest the few of you who have responded to my posts have been more comforting and caring than my own family. Posted by Geneal (Member # 10375) on :
Hi Erika.
I remember when I started my significant decline with Lyme,
(Not yet diagnosed), I was told by my Mother to have a "positive" attitude.
Like that was going to help my joint pain, brain fog, inability to speak, etc.
My husband initially told me that I was convincing myself I had Lyme.
My sisters still call it Lymes. One is a RN.
Neither get it nor do they want to.
My father gives me the "you are keeping my grandchildren" from me speech.
That because I can't and won't drive 9+ hours to visit him.
My Mom is now one of my best supporters.
She actually tested positive for Lyme also, but isn't treating.
I have a husband and two young children also with Lyme.
It is an almost impossible task to comprehend this disease.
If not for having it, I am sure I could not begin to understand.
I have closed the doors on the negativity from my family.
I try not to let it in.
I focus on my family, myself and getting us all well.
The people here may not have the exact situation as you,
But most have walked a mile or two in your shoes.
That is why if you are looking for support, come here.
We are always here for you.
I am amazed at all you can accomplish.
My hat is off to you.
Have you ever considered having your children tested?
Both of my babies have congenital Lyme.
I didn't know I had it.
Sending you positive thoughts and prayers.
Just knowing that someone else out there can empathize with you,
Can mean the difference between enduring and being.
Hugs,
Geneal
Posted by DeafFromLyme (Member # 18795) on :
Thanks Geneal
I am crying now, (in a good way). I can't tell
you how much I appreciate the support.
I am also following the way you post with the
spaces as I have learned its the best way for
all.
Until joning this group I had not thought to
have my children tested, I will now though.
Actually this past summer my 5 year old came to
me and showed me a rash on her arm. I took one
look and knew what it was. Brought her stright
to her pedi of course it was Lyme. They said I
caught it early enough adn they treated her with
amoxicillin for 3 weeks adn said she is cured!
Ha! i don't believe that. Not with all the info
I have gotten here. Especially with my son who
was born at 24 weeks (for no explainable reason)
I bet due to my Lyme. He jsut has so many things
wrong with him. I will definitely be having them
tested. One of the big reasons I think my family
doesn't believe me is because all my Lyme test
have been negative so far, except for one that
came back unequivical.. So I think for them with
out a test proving I have it they won't believe
it. I am hoping that once I see the LLMD that
they will come around and be helpful, because
right now I just keep getting sicker and sicker
and I need their help.
I can't thank you enough for responding to me
and being so supportive! Thank You!!! Posted by eric555 (Member # 18343) on :
hi deaf,
heres a link i started not long ago about my so called family members and their thoughts on this...
click and read some of the responses that followed about my cousin's comments on this disease.
best regards, eric
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by DeafFromLyme:
To be honest the few of you who have responded to my posts have been more comforting and caring than my own family. [/QB]
VERY VERY COMMON occurrence around here!!!
Posted by LLYME (Member # 18687) on :
Hi Erika,
I totally understand, I have a doctor and a pharmacist in my family. They look at all the meds I am taking and think my LLMD doctor is completely insane. Instead of doing the research and supporting me the doctor in my family just excuses everything and says things like maybe I need to see a shrink. Luckily I have been able to sort of bring the pharmacist in the family to my side by showing her the movie ``under our skin''.
The worst part about it is the doctor in my family is in pain medicine and he treats people on a day to day basis who have fibromyalgia, I bet a lot of his patents have Lyme and he and they do not even know it!
My old roommate was a med student who I tried to educate about Lyme but simply would not understand because the big organization like the IDSA and CDC says Lyme does not do this so it must be true.
Lots of people want things to be black or white / yes or no. They want you to have super conclusive blood work. They want to type Lyme in google and see a list of every last thing it does to you and that your symptoms are real without actually having to look around to find the truth. They want to physically see that you are sick in a wheelchair before they can accept you are sick.
For the people that do not understand; I have come to the conclusion if you have never been extremely sick or had a experience that allows you to relate to the hell of Lyme then there is no way to understand it. It is like talking to a foreign language to someone or trying to preach to a brick wall.
I am working on trying to look at it that way and it helps me not to revert to frustration when someone says the standard "you just need to keep strong" or "keep fighting it" we all hear. I am trying to find ways of releasing the pent up frustration in a positive way anytime someone says something like that otherwise it just eats away at me.
I feel your pain! lymenet is a great way to just vent sometimes so keep it up.
Posted by JKMMC09 (Member # 15795) on :
We have been very fortunate that our family has really rallied around my daughter, who has Lyme et al. However, I can sense that they do not believe someone as ill as my daughter can have "only" Lyme disease. They do not believe a "bug bite" can cause the severe neurological problems she's having.
My only family who believes this damage could be from Lyme is my Uncle, who is a vet. He's seen many animals go chronic, who end up being put to sleep.
They are constantly bringing up other doctors they "researched" for me, telling me I should bring her to them for second opinions... I realize they are trying to help. At the end of the day we all want the same thing- my daughter to get well.
I just suck it up and thank them for their concern, tell them I'll "look into" whatever they suggested... It's rough, knowing that your whole family is doubting the decisions you are making as a parent for your child, but it could be worse.
I hope that your family comes around.. Have they seen "Under Our Skin" ??
Posted by bettyg (Member # 6147) on :
deaf, my hubby supports me; my 3 sibling brothers refuse to deal with this. they told my sister, "it's all in your head"!
best wishes; yes, we are the most supportive folks you will ind! Posted by DeafFromLyme (Member # 18795) on :
Thank You all for the kinds words and support.. Posted by Geneal (Member # 10375) on :
Call Igenex and see if they still offer the "family discount".
I had both my children and mother tested within two weeks of each other.
They offered a 15% discount.
Each test came out to $161.50 instead of $190.00.
Every bit can make a difference.
Also tell whoever is going to take the blood to use a butterfly
And some topical lanocaine cream.
The cream (needs to be on for about 30-60min)
Will numb the place on the arm where the blood is to be drawn.
Big difference for little people and Mommys'!
Hang in there.
I would not be here if not for Lymenet and my Angels here
That God in His Infinite Wisdom has placed around me.
Hugs,
Geneal
Posted by Starfall1969 (Member # 17353) on :
As of yet I haven't had that from my family (or at least they're not saying it to my face).
But I have had some friends say I don;t pray enough (I know I don;t, but that's not why I'm sick)
or I just need to eat yogurt and fruit and go for walks.
Yes, it is disheartening, but there are loads of people here who understand and support you!
Just hang in there, and as much as possible, shut the door on the negativity, as someone else said.
Posted by MissMari (Member # 11274) on :
I have to tell you ---
In my own case I can deal better with the physical and other symptoms that I have (and there's a list) than the social and family issues.
I have very few family members at all, and after trying to make contact (and even amends, needed or not) with my two closest relatives -- my brother and my cousin that I grew up with --- I never received any reply.
My aunt ironically only TODAY finally accepted that my illness is real, devastating, and will not be an easy road.
It is especially hard since I was the caretaker for many of my family members.
I had always assumed someone would be there for me when I needed it.
HOWEVER, as another Wise Woman of the board told me, I had to learn to let it go.
I am too sick and too tired to fight about it, argue about it, or beat people over the head with sticks over it.
Just the idea that I am actually saying that is a long way for me.
I had to learn that what I needed was encouragement (my spirit was nearly broken).
And that encouragement is here.
These are people who understand it.
I also learned I had to somehow encourage myself (no simple thing --- I'm a caretaker, remember).
And now I try to use the frustration to make people aware, and work for change.
Posted by DaveNJ (Member # 17362) on :
Hey People,
Just a quick word. I know its rough and i know what its like to have lack of support. I also know what its like to have a few selective, compassionate friends. Try to focus on that if you can.
I waste zero energy on these things we cannot control as there is limited energy to go around so i give 100% to me and my recovery. You can always find a friend on here. As i like to say the only difference between family members and your nose is that you can pick your nose.
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