posted
Perhaps we should all assume Lyme is a terminal illness so we won't have any regrets...
If I Had My Life To Live Over by Erma Bombeck The following was written by the late Erma Bombeck after she found out that she had cancer.
If I had my life to live over, I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was stained and the sofa faded.
I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have sat on the lawn with my children and not worried about grass stains.
I would have cried and laughed less while watching television - and more while watching life.
I would have shared more of the responsibility carried by my husband.
I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.
I would never have bought anything just because it was practical, wouldn't show soil or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.
When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."
There would have been more "I love you's".. More "I'm sorrys" ...
But mostly, given another shot at life, I would seize every minute... look at it and really see it ... live it...and never give it back.
sometimesdilly
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posted
Lyme ed- I'm sure that's accurate for many, maybe (and hopefully) even most of us.
but i don't think it is true for all. what about those of us who went untreated or undertreated for years and who essentially don't improve with tx?
i went off abx for 2-3 months because i saw so little improvement and felt toxic; going off seems to have sent me not only back to start but somewhere far worse. being back on abx seems to have stabalized me thank God, but to where i was- back at start. maybe some of us, even those with just-fine HLA, are somehow moore tx resistant for whatever reason? i don't think anyone knows any of any of this for sure.
doc, i hear what you are saying about long-term abx. dr. fallon seems to be increasingly skeptical about their efficacy long-term as well, which is pretty sobering.
i imagine though it will take a very long while for any consensus to be reached about how "long-term" is defined, or any other aspect of a standard tx regime for chronic Lyme, if ever that that day comes.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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CaliforniaLyme
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-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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randibear
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posted
this is hitting so close to home for me now. i know that my mom has lyme. she's 83. right now her legs are so weak she can't walk anymore. she has lost the use of her bowels and is pretty much incontinent, and, yes, wears a diaper.
she confuses and mixes words something awful. she looks so old. yes, i know, 83 is old, but she looks so frail.
in my mind, she died years ago. the mother i knew died. this woman is just waiting for death. she's miserable.
it has killed her, just as surely as putting a gun to her head. oh, maybe, not physically right now, but she is suffering.
lyme does kill. it kills the spirit, takes your identity, takes everything....
i know i will die from lyme. whether it's heart, organ, whatever, the end result will be the same -- lyme. call it what you will.
i'm just being realistic about how i feel. i don't want to end up like her....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Cobweb
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posted
quote:Originally posted by meg:
I think though that it all boils down to one thought.....If you think you're going to die, you will.
Suzanne's whole life I prayed for her to live. I wanted her to live for my sake. At one time in her illness I told someone I didn't know how or what to pray for anymore, I was confused, she didn't seem very comfortable.
They told me to pray for what was best for her. Still she made it through that particular medical crisis. Finally in the end...
when I knew I had exhausted everything within me to make her comfortable, I told her it was all right to go , to go be with God. I didn't want her going back to the hospital or into a hospice facility where someone else besides me would be taking care of her.
I told her that I knew all these years I had been asking her to live, but on that night I was asking her to die because God was the only one I trusted to love her as much as I did.
She died within minutes. She looked so peaceful. I bathed and cleaned her myself. Removed her feeding tube. Brushed her dark curly hair. Held her and sang to her one more time.
Friends and family standing around quietly in the darkened room. Sobbing with me as I am sobbing now. Then I placed her on the gurney, straightened her clothes, covered her and she was wheeled out to the hearse.
I thought I was going to die,too-but I didn't.
I guess it really doesn't matter to me if Chronic Lyme is terminal or not. God is the strong one in my weakness. I just keep showing up and hanging my IV.
I realize other people may have a different take on their mortality or immortality. Live and let live.
It has taken me a long time to be able to laugh again-so I do it every chance I get. Feels good.
posted
My grandmother was exposed to Bb on two occasions. Only
after one of these did she receive any form of treatment.
She now, although she has none of the other symptoms lyme can
induce, issuffering from an Alzheimer's-like dementia.
She has lost to lyme virtually all that made life worthwhile to her...
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bettyg
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posted
DAVE,
have you been taking anti-fungal spray for your nose? I've been on this for last 1.5 years. I don't see any difference at all.
yes, i feel like i will die from the many complications of this ... a heart attack or stroke! it won't be my diabetes 2 or sleep apnea that gets me .... LYME will.
many of you have expressed yourselves on how i feel so i won't go into that again.
this also bring up another thought for me. LYME DISEASE RESEARCH CENTER AT COLUMBIA UNIV. they had mentioned AUTOPSIES in their web site from day one.
i want to see that become effective where they start studying lyme disease patients who have passed from it/other complications so they can begin to learn more about lyme !
i don't understand why nothing has or is being done on this important topic ... lyme research of lyme bodies.
carol, thanks for sharing your deepest agonies of losing your children; here your daughter!
my husband has never recovered from the loss of his 3-yr. old daughter, Kim, who died of a smallpox vaccination going into her system killing her shortly thereafter.
thanks tutu for bringing obituary link over here; i was going to when i got that far tonight.
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Tincup
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posted
Meg said..
"I think though that it all boils down to one thought.....If you think you're going to die, you will."
But...
If you think you won't die, you still will. Right? But I do understand your point.
All of our efforts won't prevent death. Eat healthy, exercise... and die anyway.
Me? Right now I'm living and dying in three quarter time. (Thank you Jimmy Buffet)
I know Lyme will be the death of me.. unless I have some other thing happen unexpectedly. I know Lyme has shortened my life.
But for some reason I don't care.
I honestly don't know why. I guess I should care? Maybe later I will? But for now.. it's ok.
When you think about it... you can't have a 20 page symptom list and not expect your life to be shortened. What I am going for is to try to keep some good days along the way to have some more fun.
But if it all ended tomorrow... I can say I had a good life and it's ok. I was lucky. I did so much while I was young.. almost as if I knew I wouldn't make it to a retirement age.. and I lived 10 lives before I turned 30. They were good too.
Two of my favorite quotes..
Some of it's magic, Some of it's tragic, But I've had a good life All the way.
and..
I will pass this way but once. Any good therefore, that I can do, let me do it now for I will not pass this way again.
Maybe it is just that I've accepted death as a part of living? Maybe it is because I've wanted to die before and thought I would die.. but didn't?
Maybe it's because I remebered this saying..
"If you want to hear God laugh... tell him your plans."
No one.. healthy or not.. rich or not... smart or not... can predict their own death and the exact cause.. and stop it from happening if their time is up... unless they plan to kill themselves.. and sometimes that doesn't work out.
Will we die from chronic Lyme and complications? Yes, of course we will.. unless something else gets us first.
Some folks want to know the sex of their baby before it is born. Some don't. My guess is those who would want to know.. like me.. can be more comfortable with knowing what will cause their death. Those who don't want to know the sex of their baby may sit on pins and needles and be unsure of the end.
I kinda think death will have it's good points. Like I'll never have to wash dishes again. My head won't ever hurt again. No scrubbing floors or taking out the trash.
OK.. I'm done.
I do hope everyone can be at peace with the process.
Geneal
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Member # 10375
posted
Dear Cobweb,
I am sobbing as I read your post.
Your experience and wonderous relationship with your daughter and God,
Has left me without adequate words to express my thoughts to you.
Know that you and all of your daughters are prayed for daily.
I just found out my 85 yr. old grandmother has terminal breast cancer.
She lives in Germany, where they practice social medicine.
They removed the tumor, but she will not get chemo or radiation due to her age.
My Mom and I talked about this and somehow I feel that it is relevent to this topic.
We all have to die of something whether it be a car accident, drowning, or disease.
I think that we all hope for a peaceful death. A passing to the next life without pain and suffering.
That is not to be for some of us.
Do I think Lyme can hasten your demise......Yes.
However, as I look to my 4 and 5 year old children,
There is no way that I would gracefully give in to that.
I plan to fight this thing as long as I am physically/emotionally/mentally able.
I don't know if this disease is part of the "grand plan".
However, if this is my way to go, I won't go gracefully.
I may not be able to prevent/predict complications of chronic Lyme,
But with God's help, I plan to stay in the game as long as He lets me.
There was a time, prior to diagnosis', that I knew I was dying.
As my children sleep in the same room as I (since Katrina),
I would lay in bed and will myself to stay awake.
My greatest fear was that my children would find me dead in the bed in the morning.
I think we all do the best we can on any given day.
If Lyme is to be my destiny, then I want my children to remember their Mom as a fighter.
A person who kept going against the odds and gave it her best shot for them.
All my prayers and hugs to you all.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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stymielymie
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DEAR COBBY: i am very sorry to here the story of your daughter. we had friends who lost an 11 year old to brain tumor, it was devastating for all.
i know in your heart this is a very important effect in your life. there are no jokes when you talk about this. this is very serious to you and i really feel for you and all your miseries.
now i know this is extremely morbid, but since we can't be organ donors, i think we should have living wills. this is a will of how we would like to be treated near death and after.
it would be extremely helpful for all lymies if you donated your body for autopsy to columbia to help find a cure for this stinking disease.
once they know where it attacks ,they may find a better solution to the cure.
i was not advocating not taking abx. but you must be careful, pulsing seems to be the best way right now, if you can not go off it.
interesting info :\ i applied for life insurance 2 years ago. they told me i could not get it because of lyme disease. i went to my rare disease doc, not a llmd, and he wrote a letter saying lyme would not shorten my life. i did get the policy for 1,000,000. so, i don't know if he was doing me a favor, but the medical examiner at the life insurance company felt that it did not shorten your life span.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Cobweb
Unregistered
posted
I have always had organ donor on my Driver's License- and i know it should probably be taken off-so how does one make a directive to have your body donated to a certain institution?
Living will-you say? i should check into it-before it's too late!
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
i think there are stages of coming to terms with having a chronic disease like Lyme, and in understanding how much chronic disease can change a life.
i also think individual realities matter a great deal when it comes to thinking about death.
I'm not afraid of death for myself; I'm almost 50, have done a lot, lived a lot, and can definitely understand welcoming the peace of not struggling anymore.
But like you, Geneal, i'll have to be taken out kicking and screaming,and for the same reason. i'm not ok about the prospect of leaving a young child behind, much less one who is battling the same disease. i'm not letting go of this life one inch....
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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cactus
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posted
What a good topic, thank you for bringing it out into the open.
Like cobweb, the topic of death and dying is very close to my heart.
Knowing that organ donation is out, I recently changed my advance directive to specify no organ donation to living donors.
Mine has specific instructions to contact Columbia to find out if they are accepting donations for Lyme research purposes. Or, if not Columbia, then another LL research facility.
Sometimes research facilities do not need the entire body, but sections of organs, so my papers have instructions to contact them to find out what they need/want - if anything at that time.
Hope this helps anyone contemplating making those types of changes to their own papers.
Doing so has made the "no organ donation" issue easier for me to stomach.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Geneal
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posted
I had hepatitis A when I was 17 years old.
I almost died from dehydration before they figured out what was wrong with me.
I was told then that I could never donate blood or organs.
At first this was upsetting. Thinking about having children one day.
What if one of them needs a kidney and I am their best match?
I've thought about at least having my body completely autopsied to see if they can
Find those ketes hanging out.
It might be too upsetting for my children.
I will cross that bridge when I come to it.
(Hopefully and willingly a long time for now).
I am reminded of Kam's posting in General the other day.
I am going to try and focus on what I can do....not what I can't.
I may not be able to erradicate these diseases, but I want to spend my time
Focusing on life.......not death.
Quality vs. quantity.
Who knows? Maybe I will get doubly blessed and get both.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I think we should all tell our families that we want our obituary to include "died from complications of Lyme disease" if it's at all in question or related to Lyme disease.
We also need to remind our families that our organs cannot be given to anyone (living).
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sometimesdilly
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posted
did someone already suggest this,and if so, sorry for the repeat.
how about asking fallon at columbia directly if and how our bodies can be used for research purposes after death?
dilly
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Vermont_Lymie
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posted
Hi everyone:
Yes, I went to the opening of Fallon's Columbia Lyme Center --
and he said that they ARE asking for donations from lymies after death --
They were very excited to be starting a new, the first
*LYME BRAIN REPOSITORY!*
OK, he probably did not call it the "lyme brain" repository, but you get the point; they do want us to donate our brains to science after our inevitable demise. And I hope that takes a long long long time for everyone.
Actually this seems to be very important. Perhaps through this lyme brain collection, we will be the LAST generation ever to suffer through the horror of the lack of public acknowledgement of chronic lyme disease because of the IDSA's mendacity.
because no one is going to be able to deny Columbia's evidence once they get going on this particular project, morbid as it sounds...
So, that is some consolation at least for all of us!
I do not know how they are going to execute this particular brain collection project....maybe they can start by updating their website?
Posts: 2557 | From home | Registered: Aug 2006
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stymielymie
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posted
more info; A LIVING WILL IS ONLY LEGAL AND VALID IF NOTORIZED, AND AGREED UPON BY YOUR FAMILY. IF THEY DON'T agree with it they can tear it up and do what they want. you can file a copy with the county you live in to make it binding, if family is a problem.
here are 2 places they say are free to complete a living will. you do not need an attorney.
if these don't work, you can get willmaker at staples or such, look in the $9 section without a box. this will also make a real will for your children and has all the states. it will work in alll states, eccept florida. florida requires all assets be put in trust, to prevent probate court.
i know this is not what you want, but everybody should have a living will. you may be in a car accident. you have to specify if you want to be kept alive, ressusitated, or kept in coma. it is your choice, but your family must agree with your wishes.
if you have children, assests and over thirty you should also have a will to protect your children. LISTEN, I AM NOT A LAWYER, ACTUALLY HATE LAWYERA, BUT THIS STUFF IS IMPORTANT AND SHOULD NOT BE DELAYED.
when i come back in 2 months i'm going to ask who had their will done!!!!!!!!!!!! you do not want the courts to decide the fate of your children, where the assests go, who will be the guardian of your children.
can join for $25 dollars and get willmaker free cancel after 90 days
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
DR. PAUL DURAY (who used to be with NIH) WILL FOR FREE EXAMINE TISSUES OF DEAD LYMIES FOR SPIROCHETES_ Phyllis MErvine has contact info, I used to have it but stupidly gave away my last copy of it hard copy- hadn't kept one-
But oyu have to arrange and pay to get tissues TO HIM- NOT THAT EXPENSIVE- a few hundred I think- arrange beforehand*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Cobweb
Unregistered
posted
quote:Originally posted by Vermont_Lymie: Hi everyone:
Yes, I went to the opening of Fallon's Columbia Lyme Center --
and he said that they ARE asking for donations from lymies after death --
They were very excited to be starting a new, the first
*LYME BRAIN REPOSITORY!*
OK, he probably did not call it the "lyme brain" repository, but you get the point; they do want us to donate our brains to science after our inevitable demise. And I hope that takes a long long long time for everyone.
Actually this seems to be very important. Perhaps through this lyme brain collection, we will be the LAST generation ever to suffer through the horror of the lack of public acknowledgement of chronic lyme disease because of the IDSA's mendacity.
because no one is going to be able to deny Columbia's evidence once they get going on this particular project, morbid as it sounds...
So, that is some consolation at least for all of us!
I do not know how they are going to execute this particular brain collection project....maybe they can start by updating their website?
Thanks Vermont for the heads up! It's called the "Off With Their Heads Program"
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Cobweb
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posted
God willing- I'll do it Monday.
I get asked all the time if I have a living will. But you're right -it is a necessary item for anyone wanting to put their affairs in order.
Thanks-we don't have to be so passive in matters of life and death.
stymielymie
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Member # 10044
posted
COBBY I GOT MY LEASH AND WILL DRAG YOU BACK TO OFF TOPIC.
SORRY PEOPLE SHE GOT LOOSE, I'M SUPPOSE TO CHAPERONE HER!!!!
CONTINUE PLEASE WITHOUT COBBY, SHE'LL BE IN OFF TOPIC.
DOCDAVE
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Boomerang
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posted
I know this is a serious thread. But I'm ROFL at the Off With Their Heads Program. Too funny.
Seriously though, Cobby, I am so sorry to read about your daughter's illness and passing. God Bless you.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Cobweb
Unregistered
posted
thanks Boom-I contribute quite a bit of writing to our local chapter of Compassionate Friends, and I had a story published in a national Bereavement Magazine a couple years ago.
Laughing, crying, writing-it's all cathartic for me. It is not hard for me to talk about death and dying in a serious manner-but I guess because I have faced it head on(or is that head off)-I've realized death really is a natural consequence of living-so might as well live it as best you can and hope you die smiling.
Once you have embraced the death of a child-it is not so hard to embrace your own death.
Sincerely, Carol
Grief Warriors
trudging their own road to Happy Destiny
Soul paths colliding in mid pain
Life plans fractured by loss
Mending in the fusion of sorrows shared.
At Compassionate Friends we laugh and cry together at the same time.
OOOPS- sorry dave- I thought it was past your bedtime. I'm just going to the kitchen for a glass of milk.
posted
i was surprised to read columbia wants our bodies! last i'd read, they didn't at this time!
also, if you designate your body to columbia, etc., your family MUST AGREE to this.
i wanted my body to go there, etc, but hubby talked to me and said he wouldn't honor that. he wants me nearby so he could visit my grave, etc. i understand that too.
so when we updated our will in march 07 before my hip replacement surgery, i made sure he agree that the money i wanted to donate after he/I both die, goes to LDA as I specified for specific percent as stated in both of our identical wills. he agreed to that.
so this is a very serious subject nor only for us but our spouses/kids.
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Boomerang
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posted
Lost my big bro last year to cancer. I still can't believe he's gone.
God Bless to all who have lost loved ones. Life does go on, and it gets easier. But you never quit missing them.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Cobweb
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posted
quote:Originally posted by Boomerang: Lost my big bro last year to cancer. I still can't believe he's gone.
God Bless to all who have lost loved ones. Life does go on, and it gets easier. But you never quit missing them.
No, you never do. I am blessed to be able to attend grief meetings on a monthly basis-because it is like attending a Memorial .
Grief ,like, lyme disease can be emotionally isolating. How good that we have a place to share.
Ever wonder how your survivors will miss you? Thinking about it brings to mind a favorite quote that TC posted:
"I will pass this way but once. Any good therefore, that I can do, let me do it now for I will not pass this way again."
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by lou: People come here for support and honesty and deserve to be able to discuss bad outcomes just as well as success stories. If you think this is discouraging and morbid, don't read the thread. Some of us are going to die from lyme, and I am going to be one of them. I would like to be able to discuss this without other people assuming it is not valid for the forum.
Go read success stories threads if you need encouragement. There definitely can be a range of outcomes.
Lou I hope you dont think my morbid topic was meant to stop discussion cause it wasnt. okydoky Lou
Dont think because you have lyme it will win either Lou dont ever give up fight the good fight.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
CaliforniaLyme
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Member # 7136
posted
SOme of us are sicker than others- and thinking positive thoughts didn't save Amanda Schmidt, age 11, who loved Halloween.
What I find truly disturbing is people who denigrate the truly sick and act as if there is something spiritually wrong with people who are seriously physically ill as if their illness is a sign of spiritual malady. I think that attitude in a support place for illness is abusive and extremely negative. I think it is positive to acknowledge the truth of peoples experience- locally we have had people bedridden who I have visited- and some of those people have been the sweetest most positive people in the world- and there was nothing wrong with their spiritual condition- only their physicality-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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sometimesdilly
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posted
i used to work with Holocaust survivors.
ask them how it was they survived when so many didn't and the answer almost invariably is- luck. no more, no less.
my husband survived 95% odds of dying when he had Leukemia just over 10 years ago. the difference between EVERYONE else with the same kind of leukemia in the hospital he was in for 8 months and himself- besides the fact that they ALL died and he did not, was "luck" too. Most probably the luck of some crucial as yet unknowable genetic difference.
But my husband's attitude did matter. It did not make a difference in what the disease could do to him- it did its best to kill him.
But attitude DID make a difference in staying alive; in several touch and go times when the pain even with iv'd narcotics was literally intolerable, his body was on the verge of giving way altogether and the priest was hovering, he definitely had a choice of staying or going, a choice he was well aware of. Only his determination to stay alive kept him alive.
and yes, the prospect of death feels different after you've stared it in the face.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Cobweb
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posted
Perhpas one of the most influential books in my attitude about living and dying was written by a Holocost Survivor- The Hiding Place by Corrie Ten Boom.
She and her sister were in the same death camp. Corrie survived, her sister did not. Corrie had a strong personal relationship with her God which she shared with others, her sister did not.
I don't necessarily think my personal relationship with God earns me more brownie points or buys me more time- but it sure makes the living easier as I journey towards my death.
Some answers are beyond our scope of understanding. When Suzanne was age 15 and in intensive care yet again, a two year old was brought in-a seemingly ,normal, happy, healthy two year old-until a brain aneurism burst- she was on life supports- and the day Suzanne was discharged and I brought her home, the family of the two year old was taking their child off life supports-she was brain dead.
Here was Suzanne-a medically fragile child who had survived far longer than anyone expected-going home. While this other family with all the expectations of a bright and happy future for their child were making funeral arrangements.
I don't understand. I felt almost guilty. It didn't make sense to me. So I have found that I just need to accept-life is what it is- I am not the one in control - I am mearly the one who has to keep making adjustments.
It's not the hand your dealt, it's how you play it.
sometimesdilly
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Member # 9982
posted
Carol-
yes, many Holocaust survivors-- even the healthiest emotionally and those who were able to survive with all or most of their psyches intact- still feel survivor's guilt, because in the end no one answer why me? or, why him/her?
that said, i do not understand why you bring up the differences in the sisters' faith in connection to survival in a death camp? surely you are not saying faith made a whit of difference in who survived?
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Cobweb
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posted
quote:Originally posted by sometimesdilly: Carol-
that said, i do not understand why you bring up the differences in the sisters' faith in connection to survival in a death camp? surely you are not saying faith made a whit of difference in who survived?
dilly
I don't know the answer to that either- how much faith makes a difference for others. It was merely a synpopsis of the book.
I do know for me that Faith makes a difference in the quality of my life-and that is something I was able to grasp from reading it.
posted
Brad Delp was the singer from Boston that killed himself
Posts: 408 | From NY | Registered: Jan 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Carol- i understand what you're saying.
What i've always found most amazing was that in those depths of hell on earth, some people, whether they survived until the end or not, were capable of remaining who they were.
Faith provides comfort and hope. I can understand why those who lost their faith in those circumstances did so. And i can understand why some held onto their faith no matter what.
what is humbling and miraculous to me is those who held onto their own humanity and even generousity, regardless of whether or not they had faith- for example, who gave away their own scraps of food to save someone else, when to do so was literally a matter of their own life or death.
that is called not just surviving, but living. not many of us do that well even under incomparably better circumstances.
mea culpa. dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Cobweb...I was on the bone marrow registry, and had to be taken off. Also the same for donating organs. I wanted to be tested to give a kidney to my friend. My Dr. said no way for many reasons including I would not make it thru.
Anyone who has had surgery with lyme knows how brutal it is.
Posts: 161 | From midwest | Registered: Jul 2007
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Will chronic Lyme be terminal? Well, it can be, if you don't get it treated; co-infections too. Mine was chronic for almost 50 years before I started treatment. Been off TBD tx just over 3 years now, work 10+ hours a day, getting over appendicitis from last year and about to enjoy a beautiful, sunny day in a horrible way... Unraveling boom from a warehouse so boats can take it to Louisiana to help with the oil spill...
Laugh when you can and live as much as you can. Technically speaking, life itself is "terminal", so all you can do is what you can do. I know these might not be the cheeriest words written, but it's the truth.
Gotta find my work gloves and get going....
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
This is really great -- the brain donation. I have often thought of donating this body of mine to science but only for lyme research (hell, I have a frozen placenta and frozen breast milk in my freezer), but if I donate to the University here, it would be used for anything they want, including mort science. I have a few dear friends who are funeral directors, and I really respect the profession, but I would prefer my sick body go where it would be better utilized.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I think very much as Tincup on this subject.
I do think its possible to die from LD. Or at the very least die from complications from it, or just from having your body so destroyed by it that something else takes hold.
However I think it is also possible to overcome LD and live a very long and healthy life after lyme. If that is not possible than so be it.
Like Tincup, I sort of don't care anymore. I know I am going to die. If its not from LD, then it will just be something else. So I don't sit around ruminating about death by lyme.
I think its in God's hands. The decision of what I die from has already been made.
Carol, so sorry for your lose. I think loosing a child would be a much more painful experience than the contemplation of the possiblity of loosing my own life to LD.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I started reading through this long thread and about 3/4 of the way I realized it was started in 2007. Just wondering if all you lymies out there that contributed way back then are still alive?
You'll have to excuse me for making fun. I need a joke to get me through the day.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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