Topic: just wanted to share. feeling the need for extra support lately
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
so my niece (12) is in hospital and she was dx with disseminated encephalitis and has facial palsy.
the first thought of her dr was lyme and that is what I thought /think too.
my brother (niece's uncle) couldn't understand or find any info on line that said you could get encephalitis from a tick . he asked me to 'educate' him!
what an oportunity!!! right? so I googled "disseminated encephalitis from lyme" and got tons of info with a page of scholarly articles stating the course of action for it, etc etc....
I was so happy to find that and send to him.
he seemed very interested. I told him you can get it from tick since I had it last summer and almost died from it.
he said all he heard was that I had lyme.
so there is was. I have 5 siblings and none of them cared enough to talk about it? to research aobut it? to even gossip ???? when wil the world wake up!
just wanted to share this story. I hope it makes sense. my lymehead is funny today.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
Lisa K It is very hard when you have lyme for family to understand us. Don't let it get you too upset because it only will make you stress more . I have tried for 13 years to get family up-to-date on lyme and how I struggle daily with it; they still don't get it. Truthfully, I think it is because the love us and hate to see us so ill. Your post helped me tonight, as I needed support myself tonight.
Posts: 560 | From PA | Registered: Apr 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Lisa, I have been dealing with siblings, childre,husb oksnds and friends indeni s l. Therr are all kinds of reasons why...but it still hurts us just as much. Take care of you and let all the other stuff go
Green darkness...it has beena really long time since i have seen you post. Hope your
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
A father regrets that he failed to believe his daughter really had Lyme disease. His message to others who have family members with Lyme: "Lyme disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real."
From a man who calls himself “Lymedad.”
“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 practitioners.
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 still 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 you’re lazy or it’s psychosomatic or you’re 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 will 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.
In 2007,“Lymedad” posted this message on a Lymenet discussion board. In 2009, I tracked him down and he gave me permission to post it in my blog. Since then, it’s made the rounds on the Internet and has been re-posted on many blogs and many websites. I’m reposting it now, because his words of wisdom continue to ring true.
I remember Lymedad. I hope his daughter is still doing well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Steve, great post, but I believe you are just preaching to the choir, so the saying goes.
I need and wish everyone out there to read and GET this kind of info. I guess I have been sick so long but only dx last summer and still have so much anger and sadness. anger esp at drs. Grrrrrrrrrrrrrrrrrrrrrrrr
will that ever go away???? I want to let go, but find it so so hard. I pray all day every day and I make strides but there are some days that just are unbearable. like today and yesterday.
and at the same time I want to be near people and have my old life back, I get physically ill when I am with people and they complain about this or that , that seems to me clearly a sx of lyme!
I recently quit my job after 2 days. my husband has not forgiven me. this is so hard . my world is collapsing again. and my son is acting funny- not himself and he is 16 so he won't admit anything and maybe it's just hormones? but
he has given up all he used to do. maybe it's his new stupid iphone? haha
I am just going crazy and it feels terrible and out of control.
why can't I at least be rich!!??
out of control.. I am .. I hope it's just this current treatment. I really hope so.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Thanks Green darkness. I like that name. I am glad we can help each other.
kayak and lymetoo thanks for the hugs and friendship.
it really helps to 'talk' here. God knows where I'd be if I wasn't able to be here .
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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