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Lkaibel

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I am not going to spend to much time and energy on this because it's not worth it, but just a brief vent here if you cafe to read further.

Since nearly the day of Brian's Dx, I have done a Blog on Blogspot that was called "Life, Love & ALS". I have posted maybe twice a month. I think there has actually been a pretty solid mix of "hard time", practical issues, and positive posts. I shared the link to these posts on my Facebook.

Yesterday, I made a post about it being the night of my organizations annual fundraiser, and how I finally realized I was crabby and upset all day because one year ago, that evening, which was so very nice was our last fully "normal" night together. The very next Brian showed me his foot drop and so it began.

I went on to say though that I was seeking happy things to think about, like just being together right now and the things we could still do.

Well, bouncing back to my Facebook this morning I see a commentthat the first part of the post "sounded like a pity party", but I made up for it with the second half.

The person who made that comment is some distant relative of Brian's. It made no difference to me. I popped her right off my friend's list, which she had only recently joined.

Pity Party? You mean like a teenage girl who got dumped by her high school boyfriend? I have no words, except bad language, very bad language.

People attack what they can't cope with, it's how a lot of people roll.
Particularly I think in the U.S., failure to smack a yellow smiley on every and anything is met with disapproval, denial, even contempt. It's a charming aspect of our culture.

It occured to me that introspection is probably highly overrated, and people without a clue don't need to read my blog anyway.I will keep my online thoughts here, thanks where people may not always agree, but they always understand.
 

lgelb

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Sorry that you had to deal with her cluelessness, Lenore, but props for moving on -- life is indeed too short.

Best,
Laurie
 

KimT

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Lenore,

I hesitate to mention ALS to any of my relatives because of the comments ranging from, "stay positive, you'll beat this" to "maybe they'll find a cure in time." They don't want details, they don't want to help, and they don't want to hear about it. I think I did better hearing one friend tell me to go off the paleo diet and eat what I wanted because I was going to die anyway. At least that was realistic.

Maybe you should invite that distant relative to visit and help you and Brian out for a week!

I'm so sorry you had to see that in writing.

Oh, and these comments were from highly educated relatives, one in the medical profession.
 

Narrowminded

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Lenore - that is so very sad. Obviously they don't have a clue. However I have family that is closer here, does see DH and are sibs of his and mine and they still don't get it. Then again I never post on FB about it either. Hugs and props for moving on.

Kim - it's a sad commentary on the state of medicine when so little is known by most of medicine about ALS. Unfortunately they probably get a few paragraphs ina text book on it and are as clueless as most of the regular world.

Heck I'm sitting in a hospital trying to get Brian's feeding tube fixed. He hasn't eaten in over 24 hours due to possible surg to fix it and most likely nothing will happen till Monday. I keep impressing on each one about his need to eat and it's fallen on deaf ears. It will takes months to try and rebuild what he loses this weekend.

It's very sad that most still don't understand this disease.

Hugs,

Sue
 

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Lenore, so wrong, and we so get it. No one understands they really don't and cutting your losses and letting those go is the best way to deal with them!
 

Atsugi

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It's terrible to know that someone would be so callous, so clueless and uncaring about your (our!) situation. That's so sad.

We scratched a few people off of speed dial when Krissy was alive.

This disease really tells you who your friends are.


LENORE, you know what, on second thought, I hope you go back to blogging. Somewhere else, perhaps. Let us know!
 

Lkaibel

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Thanks everyone. I really think that some people just need to attack what they don't understand.

Mike, the spirit may move me again on blogging, but I think I would definitely restrict the audience. There is a reason there is a thing called the "ALS Community" - we share a common and in some respects unique experience, one involving a disease that at least on this day has no more real hope for a good prognosis than it did in 1875. That's one hell of a pill to swallow in 2017, and I would challenge anyone to do it with a 24/7 big yellow smiley face.
 

Jlynn

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I haven't commented in a bit as things have been a bit rough with my PALS lately. I just have to say that if I didn't have this forum I would absolutely feel alone. People don't understand. Some people actually stay away like their going to catch it or something. It's soooo annoying to me when a friend will ask "how's your brother" and then they don't listen for the answer. Or "God doesn't give you more then you can handle". Is that so? Lenore...you just keep doing your thing and ignore the people who don't have a clue. Invite them to spend a day in your shoes.
 

Nuts

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Lenore, please don't let one insensitive person take something from you that is therapeutic. We will read and love your posts here, but if you find yourself missing the blog, Maybe do one on why you deserve a pity party and how thoughtless comments hurt. That was your space, and she was a visitor. Oh this makes me angry!
 

Lkaibel

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Thanks Nuts :)

It was not just her nonsense. I got thinking about how introspection is probably overrated, and maybe in the 21st Century there is a bit to much in the way of online sharing.

The blog has been available to anyone who had access to Google, and I would notify my Facebook friends of new posts. I have around 200 Facebook friends. Lately, I have not wanted to post much and I am not sure I felt too good about doing so.

I think if I blog again on this topic, it will be to a select audience.

We are in an odd place now anyway. Progression is slow but sure, my husband refuses antidepressents and talks about "time to end it" it seems every time we have an issue. I did confront him with that today and said making responsible end of life choices is one thing, threatening suicide every time you are upset is something else. This morning, he went on a song and dance about me not stocking up on things properly at the store, at brunch today it was the cost of the food, and I get told things like "you can't even remember to do my laundry" when I ask if he needs help with something.

I know he is frustrated, so am I. No, I am not worried he is going to do himself in some time while I am at work, It just upsets me that he is not willing to do meds and make more of the time we have while he can still do things. I told him today the whole house smells like politics (the endless watching of current events) and death because decline is his focus.

It's been hard since our clinic debacle last month. The disease really came home to us both on several levels then. I think we can sort this all out, be okay and enjoy our vacation next month. I can sit and be mad at him for being upset he has a terminal illness. Tonight he is watching movies and not politics, so I do appreciate that at least.

See, if I can't blog (and I can't to a wide audience) about my real experiences like those above, if I have to be a joyful at all times as Susan Spencer and her "Year of Living with Joy", a blog does not help much at the moment.

I am so glad you all are here. Thank you.
 

pdcraig

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Hi Lenore,

I have very mixed feelings about your experience.

One the one hand, if it causes you any further stress than you already have, by all means stop blogging. On the other, you are probably helping a lot more people than you know by being honest about what you are going through.

See, if I can't blog (and I can't to a wide audience) about my real experiences like those above, if I have to be a joyful at all times as Susan Spencer and her "Year of Living with Joy", a blog does not help much at the moment.

I often feel there needs to be a counter so people get a more realistic picture of what both PALS and CALS are going through. If I have one more person tell me they saw The Theory of Everything, so they know what living with this disease is like I won't be responsible for my actions. The title of Susan Spenser's book alone is so far removed from my experience it's unrecognizable.

People on the outside of this situation see only one very slanted vision of what dealing with ALS is like.

The idea of one troll making you feel like your voice isn't worth being heard just makes me angry and sad.

Paul
 

Narrowminded

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Lenore - I totally understand your hesitancy about blogging for a worldwide audience, and wanting to narrow the focus is totally understandable. And I also agree with Paul, the world needs a reality check.

I haven't watched any of the movies out there on ALS and probably never will. I highly doubt any of them do a good job of portraying our actual life. Just like most reality TV. There are still the behind closed door moments, if you will.

All that said, there will always be those who don't get it and sadly, that is generally everyone who has never had to care for a PALS full-time, in other words CALS, or nurses who have become CALS. There really is no way for them to completely comprehend. I do say that my father in law got it. He tried to tell Brian's sibs, but they never really heard him. My mother in law still does. However both of them spent, and my MIL still does, condiserable time with him to see what really goes on. They helped to care for him and now she cares for me by doing his laundry and cleaning. She's no longer able to stay with him alone.

The other sad reality is that if you just come for an hour visit here and there, you don't generally see much, so how hard can it be?

Please do what makes you happy and keeps you sane. Share with those you feel comfortable.

On the note of anti-depressants, I took a different track to that, and it's up to you. When I knew for sure he needed something, I reached out to this Neuro privately before a clinic visit and told him the problem, and that we had to handle it quietly. He did ask Brian some questions and privately handed me a script for Zoloft. Just a low dose. I was then able to sneak it in him. For years he didn't know about it. At the hospital one time a nurse mentioned it in front of him. Thankfully he knows nothing about meds and we covered it was to help him sleep as I always gave it at bedtime. He was ok and now knows he gets it and as far as I know believes it's still for sleep. He did have his tube, and was being supplemented with feeds so easy to sneak in.

In your case, maybe it could be for whatever to get him to take it. Only caveat would be if he's an internet searcher and looks it up. Just a thought to chew on. I definitely respect my PALS right to choose, however I don't feel like it's unreasonable to give him something that he I'll help him feel better, but won't do anything to change the trajectory in anyway. Others may disagree with my thinking on this..

Hugs,

Sue
 

vltsra

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Lenore, I'm sorry you had such an uncaring response to your blog, which I'm sure is heartfelt and true. Most of us have probably had the same experience. There's a woman who keeps telling me how what we are dealing with is exactly like when her mother had breast cancer. When I see what the PALS and CALS here who are farther down the road are dealing with, I can tell you it is nothing like her mother's illness, no matter how difficult that was. She was not required to do 24-hour caregiving; in fact, she did not get involved in caregiving at all.

I quit posting on FB when my husband was diagnosed, and have only just posted a few things in the 18 months since. Most of my "friends" don't know he is even ill. I've had some people that I told about his ALS ask me if my husband is "better now". And unfortunately I've had other people try and take advantage of him by selling him vitamins, treatments or equipment that is part of their multi-level marketing scheme.

It's hard knowing that tomorrow will not be better than today; that every day this illness will progress regardless, and that there isn't anything I can do to make him well. I'm trying to be thankful that his progression is slow, but it is also hard to know that we will be dealing with this illness for years. I've been having a very difficult time of late because I'm trying to do without the Zoloft...which may not be best for me. I'm also dealing with my PALS' frustration with his body, his fears, and his needs and desire to remain somewhat in denial and try things that I doubt will help like the ketogenic diet.

Both you and Paul are so right about the sugar-coated version of ALS that is out there in popular culture. Why should your blog be constantly about how joyous your life is with ALS when that is not your reality? I hope you can continue to express yourself how and where you need to do so and have appreciated your posts here on the forum.

V
 

Lkaibel

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Thanks Paul, Sue, and V.

Sue, at this point I think of just about everything as on the table so thanks for the suggestion. One thing I struggle with too is not expecting him to be be upbeat just for me.

Paul, you mean the life of Steven Hawking, a brilliant scientific mind who married, had two children, became famous and has survived his prognosis by over 45 years, all while being wealthy and becoming famous has little to do with the life of you and your PALS? I don't understand. Then there is the little part about how the movie, though it was definitely good could not ever really address what Mr. Hawking described as "the intense and endless mourning for one's own body". That Steven Hawking is really all about the "Pity Party" I guess...

My voice is still here and will not be silenced. I agree there IS a place for sure for the full experience of ALS from both the CALS and PALS point of view, and that it can do both the writer and the reader good. It's just not for me now a public blog.

I think some who have had a little too much Hollywood want people in out situation to be "Inspirational" for them. They want to look at us in such a way that makes them feel like we have wonderful insights and perspectives and answers for THEM. We don't. We just have whatever we have today, the good, bad, and terrible of it.
 

starente15

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That makes me so angry. I'm sorry you had to experience that but hope it won't deter you from sharing your knowledge with others.
 
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