Topic: I hope I don't sound like an awful person but ..
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
The posts about all the people that die from Lyme are just not helpful in my opinion. Are they making anyone here feel better? Yes, we need to understand that it is serious but posting day after day about deaths from Lyme is stressing me out more and making it harder to have hope and to heal. Stress raises the level of stress hormones, which are immunosuppressants which is not good for any of us.
People need to realize that yes, the disease can be devastating, but if you think about it, you can die from anything. You can die from the flu, you can die from a urinary tract infection, BUT not everyone will die from complications of Lyme. Some people have underlying health issues that can make the disease worse and everyone is so different.
I took a one month break from the board and I came back yesterday and the first post I saw was about a death. I just personally don't think this is supportive. I can understand wanting to vent about what we are going through but I don't think we need a running obituary here.
I am so sorry if I am offending anyone. That is not my intention.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I know exactly what you mean. I don't read those posts.
I guess we all just have to make the choice not to read them if it upsets us.
It's just important like you said, that people need to keep in perspective that anything can kill you.
Posts: 1408 | From Tx | Registered: Nov 2009
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
I couldn't have said it better my self, I cried my eyes out last night. I tried not to open it, then I did. What a mistake.
There is power in positive thinking. Maybe we should start a GRATITUDE page instead.
The Lord is my strength and song ! Thank you Lord for my good days, and remind me of the blessings I have in my life.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
Why hide the ugliness of the disease? I don't want anything filtered.
I think part of the reason why we get nowhere is that people in this nation just don't want to see and believe in the ugliness.
Posts: 743 | From New York | Registered: Apr 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Try looking at the positive stories, too. There is a success stories thread, and there is a story today about a little girl getting better.
I know what you mean though.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- We NEED to know ALL about this disease. ALL about it. And about how that affects everyone.
Censorship is WHY people die.
Hiding our heads in the sand does not help. We need to know that lyme can be fatal. It is a very serious infection, indeed, and it does not serve us to think otherwise.
Absolutely, this board is the place to educate. And that includes not candy-coating one of the most toxic infections known to man. Those who don't make it also should not be forgotten.
If the IDSA had their way, they would. The mortality issues would never be raised. The lives of others should not be erased.
However, all things in balance: success stories are plentiful. Be mindful of your HEALING path, making adjustments as needed and hold on to positive thoughts.
If staying off the board is helpful at times, do so, by all means. There are still other ways to find support. Many other ways. There may be some boards that are JUST for the support and none of the science or medical education.
Find a few folks to correspond with off the boards. Find some groups in your town that are focused on healing in general: drumming groups, Tai Chi, Qi Gong, cooking classes, art, etc.
You can start your own group - it need not be just for lyme but some sort of "Healing Circle" - and there may already be something just like this in your town.
This sort of approach has worked for a couple friends who just can't take the seriousness of this - and understandably. Their adrenal function just can't take it. While, they are no better for ignoring the medical details, they've carved out what works for them.
They choose to cut themselves off totally to all discussion of the nitty-gritty details and go just for environments that are "bubbled" - no serious talk is allowed. This works for them - to a degree. It's a rule when talking with them to not even mention vitamins or any current news of antioxidants. It just throws them off the tracks.
Now, you can "bubble" yourself forever, for a day, for an hour. This is is why so many just can't watch newscasts - too much sadness. So, they can watch a comedy, turn off the TV, sing songs, etc. You have control over the switch and you can change channels.
Another method is to give the seriousness a certain amount of time if you are gaining knowledge -- and then shift focus. Acknowledge the seriousness, honor that, even. And then thank your body for working with you the best it can as you do the best you can for your body.
After serious study, turn about and do a 180 degree turn. Cycle through it. Move the energy. Get up, go for a walk. Put on a favorite song and dance about a bit.
Adrenal support is absolutely vital but counseling may be, too. I'm not sure I'd be able to cycle through had it not been for some cognitive therapy years ago. When I read of a death, after the sadness and wondering about how it must have been for that young girl or that grandfather, etc., there is the stark realization that my life is in trouble.
But, then, I'm able to soothe myself, saying I'm "doing the best I can" but also I know this is not totally true so I look at where I could do better. I can turn toward that.
A key point here is that our culture invalidates illness. We hide away those who are sick because we can't stand to see. We, as patients, have to be the ones to lift the curtains. When we can. If we can't, we can move to a different venue but we should not seal those curtains or lock those doors so that no one ever sees the truth.
Light must shine on truth. While seeing (and experiencing) some horrible truths, we can also hold on to certain joys. The joy propels us. -
[ 10-07-2010, 02:03 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Keebler - thanks for the thorough post. My point is not to bubble yourself and hide from everything, but to learn what you need to learn, know that it is serious, and then go on with your treatment with hope. Not wallow in the negativity and read about it every day.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I don't see wallowing. I do see some who have never been told that lyme can be fatal who are shocked. So, that further highlights the need for discussion.
For those who are shocked, some do appear to be a bit more upset than others but that, too, needs to be aired out and welcomed for discussion and perspective.
As your mouse is the "control" - Just don't clink onto links that are sad for you. I don't always - or come back later. We have to have them here. Those people deserve to be honored and we need to learn from their path and carry on their joys.
Still, you don't have to go to that "channel" - just stroll on by. It's a bit like window shopping, too. Or a Sm�rg�sbord.
Choose just to go to the links that work for you. Ignore the the others. We can't take in all the truths of the world all the time, or all at once. We take in what we can - and your mouse holds the power for you to choose.
There are many posts here just needing to talk and get emotional support. I have no energy for that so I just don't clink onto those. I have to limit myself to where someone asks a question to which I may have a link with an answer.
Everyone here has to limit themselves to what links they can open. It's all just to much to take in, otherwise. But to limit ourselves to "Happy Talk" would be a disservice of monumental proportions. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You don't sound like an awful person. It's distressing to read about another life lost.
I think it important to honor those that have passed due to this disease. And there are those who don't know that Lyme can be fatal.
There are days when I can handle a thread like that, and days when I can't. If I can't, I don't open it. Easier said than done, sometimes.
But I don't think you sound like an awful person. I understand how distressing it can be.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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posted
I completely agree with you, BackinStOlaf! You are not the only one who feels that way. It is very distressing to read about those. We should just choose not to read them, and read the success stories instead.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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posted
I have a better idea email the obituarys to the people who say lyme is harmless
everyone here knows it can kill and the people who really need to see these obituarys are not here reading them
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I am not fond of any kind of censor ship. I only compromise and accept some censorship because if I didn't it would reduce my ability to work constructively with others to achieve my end.
There are people responsible for these deaths. This isn't just an infectious disease taking people's lives and causing unnecessary suffering. These are people who died because someone has an agenda that involves getting paid. These deaths might as well be murder.
Just another day. People kill for a lot less, like a pair of basketball sneakers.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I personally filter myself from a LOT, to survive without becoming too depressed.
I didn't even watch Under Our Skin. I watched the trailer on Youtube, and it brought back so many bad and scarring memories for me, that I decided seeing the movie would cause way too much anxiety, by reminding me of experiences I am trying to forget.
It is very rare that I read about people dying from this disease. I don't think I could stay in the right mindframe to be a fighter if I read those. Also, I will often not read posts titled things like, "Lyme resistant to every antibiotic", etc.
I think it's good if you know yourself, and know what you can and cannot handle. Why push those limits? My guess is that this is how people survive any kind of horrible thing in their lives, how they become survivors.... by choosing to filter out certain things.
Of course you need the facts, but it doesn't mean you need to read those facts over and over, when it's more of the same.
It's also important to realize that there are exceptions to everything, and one person's experience doesn't have to be yours. Even if most people with Lyme go through X or Y, it doesn't mean it will be you.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
i often overlook threads thinking they don't have anything to do with me, when they pertain to specific situations or medications, whatever- but when the subject is death, i pay attention-
though the person i'm reading about is dead and gone and will not benefit from me reading about them, i benefit from it-
i was brought up to consider death daily- not dwell on it, but enough to at least touch base with the thought in order to appreciate life- like the other day, i noticed that crows' feet have begun to form at corners of my daughter's eyes- which might seem cosmetic in light of the fact that while i take notice of such a thing, people are taking their lives, dying violent deaths- but when i notice of something small, like her crows feet, it reminds me of those people who are dying, including me- so, i try to make the best of the moment, to appreciate the fact that i'm alive, that people i love are alive, and hope, maybe against hope, that when my time comes, and those i love time comes, that it will be peaceful-
Posts: 94 | From shaker heights, ohio | Registered: May 2010
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posted
Well, as you can see by the responses, nobody here thinks it makes you an awful person to get "turned off" by things like that.
We all have our own limits. We all have things that just bring us down. Sometimes it's good to take some time away, like you did. I do that a lot. I disappear for days or weeks at a time, when I need a break.
What makes it so hard is that many lyme pts have a disruption in their decision making abilities. (Many people, in general, do. ) This whole treatment process can be very emotional.
It's hard to figure out what to take in and what to disregard, and when. It's all important information, but it's not all relevent to everyone. Sometimes not yet. Sometimes not anymore.
Then there are the things that are just plain confusing. Or depressing. Or energy-draining.
Someone mentioned they haven't watched UOS. I haven't either. I understand the severity of this whole thing. I don't need to be beaten over the head with details at this time as I am getting better.
That's the way I see it -now. That may change and I can pop in the DVD. Others obviously see it differently, as most people here have seen it already.
The facts that the info is there and the discussions are open (for those who want/need them)are of utmost importance -like some have mentioned.
That's the whole reason for lymenet, as I see it. And I am so thankful it's here.
Posts: 797 | From New York | Registered: Feb 2008
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I can understand how you feel. It is depressing. I also agree with the poster who said we should honor those who have lost their lives to this disease.
I think it also means a lot to the families of these people to see that the lyme community cares enough to ackowledge them.
For those on lymenet who are praying people, we can add the families to our prayer list.
Maybe we can try to avoid these posts if it upsets some of us; some days it can be too much to deal with.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
I am with those who think you are "not awful"...
I have to pick and choose or I dive emotionally. Today is one after seeing excerpts of Under Our Skin. When the last practitioner first offered me to see it I refused. I needed to keep my forces rallied and at that time I was in a pit of indescribable misery emotionally and did not have the resources to deal with the outrage. (undiagnosed Bart)
I applaud it, the documentary, but I cry. I read some days and cram info in like no tomorrow and it is fine...not so others.
other days I need the juice of hope for me personally and the success storeis...or a break for a few days or so.
Both the up and down have a place for the range of needs here. Some need to face it square on to stay on track...other like keebler said 'bubble".
So I am with those who say use your chooser ...
we all identify and need different things depending.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
State of mind is so important with this disease, that I would not jeopardize mine by deliberately bringing myself down.
I have been on other boards similar to this one, and they would never discuss people dying.
It's not about lacking compassion or not paying tribute, it's about getting well.
posted
It is here that I learned (and continue to) about the good, the bad and the ugly.
Seeing a post about anyone, especially a young person who has passed "due to complications of Lyme Disease" isn't pleasant.
I do read most of the posts/obits because it is my silent way of honoring those who have fought the same fight but for whatever reason were taken away too early. In reading their stories I believe that their passings have not been in vain.
Many people, myself included, will keep them in our hearts as we continue to fight this disease.
Three or four years ago I never would have even read posts like this of any kind. So I understand completely those who feel that way.
I read Cure Unknown when it first came out. It made me angry but all the more passionate about doing what needs to be done for my kids.
But I still cannot bring myself to watch UOS. I just can't get past the trailers.
We all have to pick and choose what we read and respond to here and elsewhere.
Everyone who posted on this thread has insight and no one is right or wrong.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
These people who have died were ignored and dishonored by the medical establishment and just about every other institution and most individuals. Do we want to ignore them in death also? We and their families are the only ones who cared about them. Oh, and the few doctors who would help and a few friends perhaps.
How do you think this would go over on a cancer forum where people also die?
Posts: 8430 | From Not available | Registered: Oct 2000
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