OT Rant - LONG

[Madalot]

I had no plans or intentions of posting any of this, but I woke up this morning, feeling worse than I have in MONTHS, drenched in sweat and with a pounding headache. Download looks okay, but I didn't do an overnight pulse ox because within 15 minutes of going to bed, my entire hand had gone numb and I took the monitor off to give my fingers/hands a night's rest. So I have no idea if I feel awful because of desaturations.

Then I checked Paper_Nanny’s thread, because I AM following it, only to see that StillAnotherGuess is picking on me there as well.

Ignoring it would be smarter and if I felt better, that’s exactly what I’d do. But I don’t and right now, I remember Whoopie Goldberg’s words in “Jumpin’ Jack Flash” – I am ready to kick you so hard in the nuts that they get lodged in your fucking nostrils. I do not understand why you are so fascinated with me and why you feel the need or desire to try to hurt me (not that you do, you just piss me off). It’s just not something I can understand because I would never do it to my worst enemy, let alone someone I don’t even know. You scare the shit out of me because you are obviously extremely unbalanced. Seek help.

When I came to this forum, I had been diagnosed with OSA and was welcomed here by some really fabulous people. When my “official” diagnosis was changed to diaphragm muscle weakness and was switched to the Ventilator, I was ASKED to stay and continue posting. And yes, I screwed up badly last year with Muffy/NotMuffy & -SWS because I was not at a point where I felt comfortable taking control of my therapy, something that is STILL being thrown in my face, not by NM or –SWS, but by the idiot bully/bullies that seem so fascinated with me and my situation.

Every time I’ve thought “screw this” because of idiots, someone that I really respect and care about has come with kind and caring words and convinced me that I need to stay – if not for myself, for some lurker that might benefit from my experiences. So, I keep putting myself out here, warts and all, good mood or bad mood, ready to do something or too scared to try, because I have been ASKED to.

I am not going to get into all the “woe is me” details of my life, but the last year and a half has been difficult. I knew my neuromuscular disease would continue to progress, but I was NOT expecting breathing difficulties and have been blindsided by the inability to get them controlled in a way that is effective but NOT causing other problems.

I feel horrible and I do not feel like I am living anymore – I exist. I get little joy out of this "existence" simply because nothing I enjoy is possible for me anymore. At any given time, especially in the last 6-8 months, I have thought about ending this “existence.” The ONLY reason I haven’t is my husband and kids. Every time I get down and want to stop using the machine (which would eventually take care of this), my husband gets upset, sometimes crying, and begs me to please keep trying – not to give up. I have asked him at least a hundred times in the last year to PLEASE shoot me. He says he can't because he's not done with me yet. Gotta love him.

And my kids – even though as teenagers, they are driving me insane (which doesn’t help my mood). But just when I am about ready to give up, something happens. My daughter, now 17, said to me the other night, “Mama (she calls me mama), you HAVE to live long enough to make it to my 21st birthday. You promised that you’d go “clubbing” with me and we could drink beer together!”

I said to her, “Yeah, I remember. You’ll be pretty pissed off if I don’t, won’t you?” You know what she said to me? She looked down at the floor and said, “No, I’d be really sad.”

I have got to find a way to sleep better and feel better. And even though a few idiots here just don’t get it (or me) – I am really doing the best that I can.

So – let’s take a mental picture of your nuts lodged in your nostrils - with my footprints on them – and how about leaving me alone? Before you push me too far. If you can't stop for me, how about stopping for these two children that I have tried to save?

[howkim]

{{{{{{{{{{Madalot}}}}}}}}}}

[JohnBFisher]

I happened to catch some of the Bucket List last night. In it, Morgan Freeman's character notes:

You know, the ancient Egyptians had a beautiful belief about death. When their souls got to the entrance to heaven, the guards asked two questions. Their answers determined whether they were able to enter or not. ‘Have you found joy in your life?’ 'Has your life brought joy to others?’

So, let's ask you that set of questions.

Have you found joy in your life? Sure sounds to me as if that is the case.

Has your life brought joy to others? There would not be a young lady telling you she would be sad if you left early, if that were not the case.

And what would happen if we ask the same questions of the other poster. Though God only can answer that, that poster would NOT get a positive review from this forum.

So, while we all understand your frustration with that type of unwarranted attack, remember it is you that love and are loved. Those without love spitefully try to hurt those with it. Though it is hard to ignore it, realize that such spite is an affirmation that you are doing the right things.

And we all hope things go better soon.

[BleepingBeauty]

OMG, my heart is breaking.

If the bully doesn't leave you alone now, he's surely the most heartless bastard on the planet. Maddie, hang onto the fact that the VAST majority of members here are in your corner, wishing and hoping for more than just an "existence" for you. You have a lot more on your plate than most, and I give you tons of credit for trying as hard as you do. You're a really good person, and you sure don't deserve some of the shit you get around here.

Lots of us care about you. I hope you can find the strength to hang in there - for your husband, your kids, other family members, and for us friends.

[redjoe]

Madalot,
I have very seldom commented on your posts because I didn't feel I could contribute in a useful way. I have, however, prayed for you and your family that things will get better, and that you will have the strength to meet your challenges. I truly do understand the pain of being sniped at, but please do your best to remember that those of us who care far outnumber the jerks.
Joe

[Pugsy]

please do your best to remember that those of us who care far outnumber the jerks.

Amen to what Joe said.


I know it is so hard to not let the jerks get under your skin and sometimes you just have to sound off.

[archangle]

Do not feed the trolls.



Trolls are sad, deformed, mostly brainless creatures that hang out under bridges and on internet discussions. They have no friends in real life and can't make interesting conversation, so they foment discontent wherever they go in an attempt to give their miserable lives some meaning.

The most effective way to handle them is simply not to acknowledge their existence. Be minimally polite, but don't let them pull you into a pointless discussion. Any sort of negative response only strokes their egos.

[BlackSpinner]

I learned this phrase "Non illegitimi carborundum" a long time ago "don't let the bastards get you down". However the real proper way to say this is apparently :

Never let the bastards wear you down.
Noli nothis permittere te terere.

Nothis is the dative plural of nothus, which derives from the Greek word νόθος. The native Latin word for "bastard", current with this meaning during the Golden Age, is spurius; it is not illegitimus, or nothis, or bastardus. However, nothis means the father is known, spurius means the father is not known. The sole advantage of nothus for this translation is that it has a figurative derogative meaning, but only in poetical or post-classical Latin.

I had the "bad" phrase embroidered on a book mark for years, that way it was my constant reminder.

[jbn3boys]

OMG, my heart is breaking.

If the bully doesn't leave you alone now, he's surely the most heartless bastard on the planet. Maddie, hang onto the fact that the VAST majority of members here are in your corner, wishing and hoping for more than just an "existence" for you. You have a lot more on your plate than most, and I give you tons of credit for trying as hard as you do. You're a really good person, and you sure don't deserve some of the shit you get around here.

Lots of us care about you. I hope you can find the strength to hang in there - for your husband, your kids, other family members, and for us friends.

Amen! BleepingBeauty said it all for me! (Thanks BB--typing one handed stinks!)

[Paper_Nanny]

Ignoring it would be smarter and if I felt better, that’s exactly what I’d do. But I don’t and right now

Not feeling well does indeed impact the ability to ignore annoyances. I am sorry you are having to deal with such annoyances.

It’s just not something I can understand because I would never do it to my worst enemy, let alone someone I don’t even know.

That is probably because you care about other people; even when you are feeling so awful, you see the value in others. There is value in you, too. Even when you can't see it, others can. Your husband, your children, people who have posted here...

Every time I’ve thought “screw this” because of idiots, someone that I really respect and care about has come with kind and caring words and convinced me that I need to stay – if not for myself, for some lurker that might benefit from my experiences. So, I keep putting myself out here, warts and all, good mood or bad mood, ready to do something or too scared to try, because I have been ASKED to.

Again, I think this is a reflection of caring about others. You are willing to put yourself out there so others may learn from your experience. And, even if someone doesn't directly benefit from your struggle to breathe, they could very well benefit to see someone face their troubles the way you are. People could learn from that.

I knew my neuromuscular disease would continue to progress, but I was NOT expecting breathing difficulties and have been blindsided by the inability to get them controlled in a way that is effective but NOT causing other problems.

I don't know which neuromuscular disease you have, but I can say that comment sounds a lot like some of the unexpected slams I have had with damage from multiple sclerosis. I didn't expect this! This wasn't supposed to happen! Where did this come from?!?

I feel horrible and I do not feel like I am living anymore – I exist. I get little joy out of this "existence" simply because nothing I enjoy is possible for me anymore. At any given time, especially in the last 6-8 months, I have thought about ending this “existence.” The ONLY reason I haven’t is my husband and kids. Every time I get down and want to stop using the machine (which would eventually take care of this), my husband gets upset, sometimes crying, and begs me to please keep trying – not to give up. I have asked him at least a hundred times in the last year to PLEASE shoot me. He says he can't because he's not done with me yet. Gotta love him.

I talked a lot to the therapyst I was seeing when I was diagnosed with MS about that kind of thing. What if I get to a point where I am only existing, not living? He said that if that happened, I would go on existing until such time as I was able to live again. And while I was existing, he said I could still have meaning in my life by modelling to others how to exist and perservere, despite what was happening to my body. I could be an example of how to suffer with dignity.

He also reinforced that if I were to end my existence, it would be horribly painful for my husband and because I love him so much, I would not want to put him through that. You are a caring, loving person. You don't want to inflict that kind of harm on your husband.

He also quoted statistics to me about the suicide rate in children who have a parent who died that way. I can't remember the exact number, but those children are at much, much higher risk. I would think with your children being loaded down with baggage right from an early age, they would be even more at risk. He said one reason children with a parent who died from suicide are at higher risk is because for those children, suicide isn't an unknown, something that happens to other people. It is something they have seen as a real possibility. You don't want to do that to your children.

That said, even while knowing deep in my heart that I would find a way to exist and find meaning in my life, I still bought a copy of Final Exit. I made sure I was prepared with what I would need if I changed my mind. And I still thought about it. Sometimes I thought about it constantly. Sometimes not as much. I found people to talk to about it. People who would understand that I was feeling hopelessly overwhelmed and needed to think about a way out. People who didn't get so completely freaked out that they couldn't hear what I was saying.

I have got to find a way to sleep better and feel better. And even though a few idiots here just don’t get it (or me) – I am really doing the best that I can.

And that is all anyone, including yourself, can ask of you. I do hope you find a way to sleep better. And I do hope you will feel better. And I hope that you will be able to ignore or disregard those who don't believe in you. Because when you're having trouble believing in yourself, people like that are the last thing you need. My final hope for you, Madalot, is that you will find what you need to believe in yourself.

Deborah

[Dojers]

Welp, I'm new here so I don't know anything about what you are talking about (in regards to the idiots harassing you) but I DO understand where you're coming from with the "please, just shoot me and get it over with" due to having severe chronic pain. I don't know where people get off being rude to other people - until you spend even 10 mins in their shoes, don't even TRY to jump down their throats.

Madalot - I'm GLAD you're still here (even tho I don't know you). Obviously, your experiences are worthy or else you wouldn't have been asked to remain and share your experiences. I wish it was easy to ignore the ignorance that a lot of people tend to display but it's not. Just know that there are people, like me for instance, who are willing to pray for someone they've never met, know nothing about (outside of what I just read), but still care enough to "bother" with it.

Thanks for your rant - I'd like to pull a "Jumpin' Jack Flash" on those idiots as well! God bless and take care!
Jodi

[robysue]

gvz: I love the poster image.

Madalot: I sincerely wish you the best on your journey forward in looking for a way to recover "living" from "existing". You have a very special family. But a large part of what makes your kids and hubby special is you: To them, you are as special as they are to you. So keep up your quest for finding a way to make things more bearable.

And it's a real shame that your difficult medical problems seem to attract the kooks and trolls.

[Madalot]

I appreciate the responses here (and the PM's). I had such a horrible night on Thursday night and felt so awful yesterday -- and I snapped.

My apologies and regrets for the Rant. But as I've said numerous times, warts and all, it is what it is.

Today is better (see my other thread) --

[jbn3boys]

I appreciate the responses here (and the PM's). I had such a horrible night on Thursday night and felt so awful yesterday -- and I snapped.

My apologies and regrets for the Rant. But as I've said numerous times, warts and all, it is what it is.

Today is better (see my other thread) --

No need to apologize! We are here for the good and the bad!

[snuginarug]

Once again, JohnBFisher says it all so much more eloquently than I could ever do.

But in my own fumbling words, I want you to know I think you're a great lady. Those who think otherwise can go stick it.

I'm hoping for better nights for you.

((( mad )))