I've been dealing with my family members lack of knowledge
Of Lyme disease for over a year.
Have two sisters who currently reside in Spring, Texas.
Neither one has ever taken five minutes out of their schedule to read about Lyme.
In fact, the younger sister, a RN still calls it Lymes.
As I begin the process of rebuilding (finally over two years past Katrina),
The landscape of my property (8.5 acres) has drammatically changed.
What was once wooded with grass is now without trees and is one big
Dirt pile (mud if it rains).
Here's the rub. My sister's can both go to North Georgia and "walk" around
In the woods without a second thought. My Dad says there is no Lyme there.
Mind you, after such a walk several years ago, I pulled 3 ticks
Out of my younger sister's behind which had embedded.
They think there is some kind of "black" magic going on in my neck of the woods.
If they come here, they will magically get Lyme.
Obviously, my family and I no longer take walks in the woods.
It is okay to come see me, but no one is allowed to walk outside.
I am all about caution and prevention, but it makes me so mad
When their kids go camping in Oklahoma for a week, but aren't allowed to
Go outside at my house. What kind of glass house do they live in?
They all just finished traipsing around the heavily tick infested
Woods that my Dad lives in, but where I have no grass, no trees, no nothing,
They can't be. I must admit that I am tired of this.
I'd rather not see either one, than have them play these games with me.
You'd think just one of them (maybe the RN whose husband was diagnosed
With Post Traumatic Parkinson's Disease at age 29)
Would just look at the info regarding Lyme???!!!!
He was an avid deer hunter with a positive history of tick bites.
It just wears on my nerves. I'd love to see my neices and nephews.
I would never do anything to put their children in harm.
I guess I feel that if you don't educate yourself and yet
Go on to live a "high risk" life in regards to possible tick bites/exposure,
It just equals stupidity in my book.
I know, rather harsh words from me.
I just know though if they ever were diagnosed with Lyme,
It would somehow be all of my fault.
Thanks for letting me vent. It allows me to let go some of the anger I feel.
I say just stay away. It wears me down to face such ignorance
And is not part of my recovery.
Hugs,
Geneal
Posted by Aniek (Member # 5374) on :
Geneal,
You do what you can do. You have provided your family with information, and now it is there choice.
Don't give up a relationship with your nieces and nephews because of their parents ignorance. And don't give up a relationship with your siblings because of ignorance.
Ignorance is not knowing. It is not malicious. Sometimes, it is best to feel bad for those who are ignorant because they do not know better.
You have done what you can do. Why stress yourself with wishing you could do more? Why stress yourself with wishing your family acted different?
Focus your energy instead on what your family can do inside your home. When they do come to visit, have activities for them so your home is a home your nieces and nephews love to come visit.
I'm not sure how old they are, but when I was a kid, two of my older cousins would set up a haunted house when we went to visit. It was really simple, we would close our eyes and feel icky feeling things, or someone would hide in a closet. My brother and I loved it. One of the cousins passed away in a car accident when she was 18. Those haunted houses are my strongest memory of her.
Posted by Geneal (Member # 10375) on :
Dear Aniek,
I know that their ignorance is not malicious.
However, it is hard to interpret that as anything other than
A total lack of interest. As for having activities in my home,
I do the best I can with two bedrooms and a hallway.
That is how we have been living for almost 2 years.
It is just difficult with 6 children occupying that space.
Two are teenagers and the rest are under 8 with the youngest (mine) being 4.
I wish they would wait until the new house is built.
I do welcome them. However, each visit is both emotionally and physically
Taxing, not to mention that my older sister's two teenagers are extrememly destructive
Having not been taught any respect for others' things.
I am looking forward to seeing the children though.
Your right. I am going to focus on the positive and not the negative.
Sometimes it just helps to put things out there and think it through.
My Lyme brain doesn't allow me to do that mentally all the time.
Hugs,
Geneal
Posted by map1131 (Member # 2022) on :
Geneal, someday the world is going to understand all this. I believe with all my heart that someday the real story on what is happening is going to blow into BIG story.
I will be able to look all my family and friends in the eye and I will not have to say a word. They will say to me "you warned us that lyme & company was serious".
Have faith. When it becomes the talk like AIDS epidemic was. Not that AIDS isn't serious and killing way toooooo many people. But the world was ignornant about it not so many years ago.
Pam
Posted by Monica922 (Member # 13496) on :
Hi Geneal After going through several hospitalizations and just complete horror and pain since March...my mother literally said well it is just LYMES (yes she says LYMES also)...but come on...it is just Lyme. Where the heck was she all year? She saw my screaming and crying in pain....note I was suicidal from the pain....she is absolutely nuts! My father said...well at least you do not have cancer. Honestly I gave up on their support a long time ago.
Posted by Monica922 (Member # 13496) on :
LOL..I just hung up the phone with dad....and I quote...why aren't you better yet after 7.5 weeks of antibiotics? Whi isn't it working on you? HE MAKES YOU FEEL GREAT!
Posted by Geneal (Member # 10375) on :
Ouch!!!! Talk about misery loving company.
I know how blessed I am that my Mom is supportive of me.
I do recall her telling me in the days prior to diagnosis,
When I knew I was dying, if I just had a "better attitude", I would feel better.
I do believe that Lyme will be a household word as so many will either
Recognize the symptoms in themselves or others.
I already believe that besides my husband and children (and Mother who has Lyme
Specific bands via Igenex )
That my father possibly has it as well as my younger sister and her husband.
I know that if it wasn't me with Lyme and it was another family member,
I would have looked it up. Researched it. Found out as much as I could
So I could be as supportive as possible.
Maybe it is the differences in our behavior that really stands out.
They (my sisters and father) have always been this way.
I just don't think I was as aware of it as I am now.
I am sending you all, my extended family, all the positive thoughts
Prayers and support as I can.
Hugs,
Geneal
Posted by map1131 (Member # 2022) on :
In my family, I know without a doubt that my 24 yr old niece has lyme & company. I've posted about her before and my stubborn sister who refuses to believe it.
After all the gastro doc told them that she has colitis. No she was negative for lyme. Fevers, bad cycles, colitis, fatigue, depression, many other odd things in the last 5 yrs.
Why would I be suspicious, esp. when I know about the embedded deer tick at the lake home she got 5 yrs ago, the same lake where I got it and their golden retriever years ago.
Because I'm fanatical????? Recently I'm pretty sure my grandson, soon be turn 7 is also with something? Removed deer tick from him in June. I've posted about him recently.
I really think my husband is probably positive. Yes, he took abx for 6 weeks twice in last 3 yrs. The first time his sx were lyme & company no doubt after 2 weeks of this funny flu????
Took abx for 6 weeks and major stuff disappeared. Then he had embedded tick again in 05 at our lake home. More abx for precaution.
He gets treated with my rife machine all the time. While I'm running my machine for me, he sitting there getting the same frquencies.
Geneal, don't worry you won't be looking all crazy someday. lol
Pam
Posted by Peacesoul (Member # 13709) on :
I've come to realize that others have their own issues and nothing against me is done with bad intent.
Don't take it so personally, I know it's tough, but others are just enthralled in their own problems.
Posted by Geneal (Member # 10375) on :
This just tops it off though.
Last night, despite two hard freezes last week,
I found a dog tick on one of my dogs.
My husband was "scared" to remove it.
I used my tweezers, which I cleaned in alcohol after,
And my gloves, which I threw away, and pulled that sucker out.
All dogs keep advantix on them.
I guess I thought ticks were dormant in the winter.
Boy am I wrong!
I learn something new every day about this disease and the vectors.
Tough little buggers.
Hugs,
Geneal
Posted by Vermont_Lymie (Member # 9780) on :
Hi Geneal,
Just read the story of your family above.
Sounds painfully familiar to me too.
Behind all the denial, in your family and mine, and in others is alot of FEAR.
Not sure what we can do about that other than be brave (and informed!) for others. Perhaps eventually they will catch on...
Posted by Lymetoo (Member # 743) on :
Geneal....I'm sorry that you're dealing with all this. I know how frustrating it is!!!
Just keep praying for them to open their eyes!!!!
PS...It will NEVER be cold enough in Louisiana to keep the ticks away. I don't think it's cold enough anywhere that doesn't have several feet of snow on the ground for several weeks!!
They probably come right back the minute it thaws.
[ 12. January 2008, 10:50 PM: Message edited by: Lymetoo ]
Posted by map1131 (Member # 2022) on :
This is something laughable to happened to me 2 weeks ago at my PCP/Internists office.
He's treated me for lyme & symptoms since '99. He's learned stuff from me. That's okay, he's not the lyme specialists, I am. lol
He lives in the same subdivision that my sister lives in. There is this large pond that is owned by someone that hasn't built yet. He takes his kids to this pond to fish.
This area is so run over with deer and other wildlife. Very wooded area. I told my doc, I hope you are protecting your children from ticks when you take them to the pond.
His response......ready.......I don't have to worry about ticks this time of year. I about came up out of chair to give him a thumping on the head. We're in Louisville, Ky, have had maybe 4 days of cold weather all winter.
No need for ticks to go underground and into deep hiding. The weather so far this winter had been rainy and wet.
Ticks are trying to survive. They need a blood meal and I don't want you or your children to experience what I've experienced.
I told the doc, I wouldn't take my grandsons into the pond area to fish if someone gave my a million dollars. The doc said he does tick checks on his kids when they come back. So??????? He also using lots of tick repellent??????
So Geneal, I know your frustration girl. The world will get it someday.
Pam
Posted by Kiwikid (Member # 12974) on :
Geneal, I have not posted on here for months. Last time I posted I didn't have a LLMD but now I do as of about three months ago. He a neighboring state and is mentioned on here frequently.
I, too, have problems with people "getting it" as far as Lyme goes. Because I look o.k. I must be o.k;) Most people are not going to go to the trouble to find out about it. My mother who has had all sorts of health problems for the last ten years and I've been there every step of they way for her, always tells me about her ailments when I say I'm having a bad day.
I think I contracted Lyme about last April because my first doctor appt was last June two months after all sorts of symptoms. The third docter (minor emergency doc) listened to what I said and asked if I had been anywhere where there are woods, deer, etc. and yes I had. We have a cabin in the Ozark mountains loaded with deer. But I don't recall a tick bite, but I guess most people don't.
My LLMD has me on anbx and various other things. It has been a rough time to say the least.
I have a trip planned with my husband next month to go and see my son down under. It was planned long before this Lyme and I assumed I might be over it by February. Duh!!!
Anyway I haven't seen him in a long time. I am terrified that I will have a rough time of it. I am truly depressed about this. It is not easy to get there. I want to go and see him and if I don't it will be a long time before we can plan this trip again.
I guess I just wanted to get on here and complain because I need support as I have none really, except for my husband. He's been wonderful.
I wish all of the fellow Lyme sufferers the best and a good recovery.
Lyme can be hell.
Posted by CaliforniaLyme (Member # 7136) on :
Geneal, my family is just REALLY self-absorbed in their own worlds of politics and law and etc etc etc- they have no interest in Lyme whatsoever! Not even enough to call it Lymes! So believe it or not, your family sounds positively ACTIVIST next to mine- even mentioning it!!! Sincerely, Sarah
Posted by Geneal (Member # 10375) on :
You guys are so good to me and my weary soul.
I survived 6 kids. I spent two hours last night
Making cut-out sugar cookies so the kids could decorate them.
They made a huge mess and had a ball!
My younger sister, the RN, even left me a message on my cell.
It said that she trusts me to take her little girl outside.
There must be a full moon.
However, as I have recently discovered 2 dogs with ticks (dead)
I was overly cautious and kept her inside.
Of course my dogs have been wandering the woods by the river,
Which hopefully will end when the fence goes back up.
I survived (barely) and was able to enjoy the children.
Hugs,
Geneal
Posted by ICEiam (Member # 7519) on :
OH, could I write a book on no support from anyone. I have Munchausers (sp) and have talked my 27 year old daughter into being sick since she was 11 years old.
She is totally brainwashed and also has anorexia to get attention. All the doctors that she goes to (LLMD'S) are quacks. Of course all the Ducks throughout the 14 years of undiagnosed/misdiagnosed were right.
The piles and piles of test results from IgeneX, this lab that lab that show she has liver enzyme problems, thyroid, adrenal......on and on
I must have typed on my computer and printed off.....do we have anything to do with my family or her father or his family? NOOOOOOOOO
They are hurtful, rude and have no compassion. We are all crazy. Me, Daughter and her husband, and we are going to make my Granddaughter 5 crazy too. Since she was born with Lyme, but of course we made that up too.
We flew all the way from Boise ID to Ct to see Dr. J who is also a quack just so we could go into debt some more to have a vacation? We flew in one day, saw him and came back the next day....some vacation.
It is that way on both sides of the family, her husband's family just nod their heads and don't say anything......not sure that is any better.
UGH, I feel for those of you that have to deal with this. I am not even angry anymore. Used to be, but not now, I just plain don't care. Takes up too much of my energy to be angry.
And yes, I have given them all tons of information, I am pretty sure it ended up in the garbage....
Hugs,
Posted by hshbmom (Member # 9478) on :
Hey ICE, are you sure we're not related?
Sounds like my husband's family.
So so sad. They're missing out on our children's lives because of the lies they believe.
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and was able to enjoy the children.