Have I helped anyone on this forum?

[believingjesus]

Two days ago I responded on a thread that I personally did not like to see something posted especially when it was regarding a young persons death because everyone was trying to live. I also posted on that thread that I have nothing against the original poster as she is a wonderful person full of compassion and I also explained that I know it may have helped someone else, just not me. I was told on that thread by a different person (not the OP) who is very much a regular member on here that I should seriously consider if this forum is for me as she said I have a problem with how people respond, who they respond to, what is posted, etc. In that message I could see the over-analyzing of what I had posted and implying things I never said as has been done on other threads. I also know this same person has such tremendous qualities that I adore and is so helpful and passionate on this forum and I would not want her to feel I have anything against her because I don't. I respect that she has her opinion and she can say what she wants to me but it has brought me to this thread. I explained that even though I posted another thread a few months ago regarding whether people on this forum support ALL people that I had come to the conclusion that maybe I was expecting too much and was being judgmental and that I did not have a problem with an article posted this week as it may have helped others, just not me, I was only stating my opinion on the article. I was also told by another poster on the same thread that I was troubled and a stalker, etc. which I explained what happened there and apologized. I am not asking for anyone to take sides here as I adore these people too. I see a side has already been taken and it is not mine. I just want to know if I am wanted here or not.

I feel that I do not even have one friend on this forum and if that is the case I do not want to be on here anymore either. I am able to take whatever anyone says as I have faced worse in my life many times over. I had come to feel I was part of this CF family even though I have differences than the majority and even though I sometimes can't shut my mouth and get hot-headed. I have felt comfort knowing someone else out there may know how I feel as a mother whose sons mean the entire world to her and also as a person who cares about others on here with CF. If I am mistaken, I just want to know, and I will from this day go back to reading and never posting any responses.

I have included two people in particular on this forum in my prayers at night when I pray for the safety and good health and well-being of my own children, I prayed as well for them repeatedly. I have tried in my own responses to people when they were afraid and were asking for help on here to try to give them positive but truthful replies and sometimes when nobody else replied. When someone had been missing from this forum for a few weeks I noticed as I missed them and I sent them private messages hoping they were fine. When someone posted their response to a thread and it was not well-received by others on this forum, I still tried to let them know that we support them too and had compassion towards that person also. When nobody replied for a while to a mother whose child was facing a transplant I tried to tell her I was there for her and her child. I tried to convey my experience with Jesus on this forum without forcing my beliefs on anyone else but sharing what I, myself, found - but still being open in my heart for others who don't believe the same without changing what I know. I thought all these things outweigh that sometimes I may have a difference with others on this forum and my opinion may differ and that sometimes I may be wrong, but maybe I am mistaken. I do feel unwanted and outed and if I am mistaken about how others feel about me on this forum then I want to know. No replies gives me the answer too. I thought I had made at least a few friends and I thought I was being supportive of others especially when they were in despair - as I am in sometimes too. I thought I was being supportive of everyone and even others who felt they were being sided against. What I have received in feedback is that I do not fit in with this group and need to reconsider this forum.

Thank you for anyone taking the time to even read this.

 

[jaimers]

I will reply but I'm heading out for the afternoon and need to gather my thoughts anyway. I will say that you are wanted here and that, if I may offer a suggestion, it may be better to have this particular conversation through private message or email with the individual people that you have dialogued with over the past few months rather than in the public forum. It seems that passionate discourse over the Internet, especially when people's hearts and feelings are deeply invested, rarely ends well for either party and bringing up hurts and wounds to and from individuals is better done between those two privately.
But please know that you are wanted and welcomed here.

 

[ethan508]

Has anyone on this thread helped you? How did they help you? Then try your best to do those types of things.

Has anyone on this thread hurt your feelings? How did they do that? Then try your best to not do those things.

I believe you have a lot of passion. That is not bad, but it leads you to pick fights with people whom you don't intend to. Sometimes you don't get why stating your opinion in a very strong way can sound to others like they are being shouted down. This community should be welcoming which leads to some diversity. With diversity can come conflict, but staying respect in our arguments can help us understand each other better.

Just because you don’t agree with the popular opinion doesn’t mean people don’t like you. You are more than an opinion. It takes character to go against popular opinion but even more to be friendly to those you disagree with. If your stated opinion that is contrary to many posters don’t take that as a personal attack. It is just a difference of opinion.

Also take few minute to figure out how to use the forum. Try your best to post in the appropriate places. If you miss post, edit or delete your post. Do your best to not thread jump. If you have off topic questions or thoughts, start a new post. If a previous post was misunderstood by a responder then reply with an effort to clarify your position and not an effort to belittle the responders understanding.

You also have a lot of compassion that is a very good thing. Continue to use your compassion to reach out to others. That will always be appreciated.

 

[triples15]

Hi Believing,

I would second the points that Jaimers and Ethan have made, in fact, I think Ethan makes excellent points.... and I also just have a couple minutes so I'll try to hit the highlights here.

To directly answer your question, yes, I am quite certain you have helped people on this forum. You often share worlds of support and encouragement. No doubt those people appreciated that. In addition, I saw you go out of your way to find an assistance program to help a specific member, and also shared that information with others. Those are just a couple examples of where you have helped, doesn't by any means mean that they are the only ways you have helped. As Jaimers said, you are welcome and wanted here.

Second, the incident you are referring to in which you accidentally posted a reply on the wrong thread. It was just that, an accident, and unfortunately a misunderstanding arose from it. You have explained what happened to the member who was upset, and it was clear there was no harm intended and now it should be moved on from. These forums do have a learning curve, and I understand your explanation completely of what occurred for you to post there mistakenly. I wouldn't spend another minute worrying over this event.

Third, your comment regarding not wanting to be here if you don't have a single friend on here. I think that's part of your problem. Most people aren't here for friends. Their here for information, support, etc. Do friendships sometimes come of this, absolutely, but not always and not right away. I've been here since 2007, and have made MANY acquaintances and people I appreciate and respect very much and enjoy interacting with. That being said, would I call them my "friends", I don't know, maybe?? I would not be worried about the fact that you don't have a bunch of "friends' on here. Also, your reference to people taking "sides'. I personally don't see people taking "sides" on this forum at all. I know that I would NEVER say that I agree with someone on here when i don't, just because we might be "friends". Just because others happen to agree with one another does not mean they are taking "sides". I think focusing on friendships and people taking sides is misguided and even a little juvenile.

Fourth, I feel compelled to address the incident you are referring to with the member who told you to reevaluate whether this is the right forum for you. I read and then reread her post when the original conversation was taking place. I absolutely believe those comments were meant to be constructive and not hurtful. At that point in time many of your posts were coming across as anger and expressing a level of contempt for this community and it's members. I felt as though we (it's members) were shamed on multiple occasions for not answering certain posts, even after there was a constructive and respectful discourse on the subject on your original thread. You are absolutely allowed to post these feelings, however, other members then also have the right to have their opinion, which in this case was that maybe this isn't the place for you if you are having these feelings about the community. I think she honestly meant that if the forum was only serving to frustrate you, then maybe it wasn't good for you, as in she was thinking it might actually be harming you rather than helping you to be here.

I personally feel that as long as you feel you have something to contribute and/or you are gaining anything by being here, then you should absolutely stick around. I think that as long as things are respectfully stated and discussed, then often times the best growth can come from having people with differing opinions.

I hope to see you around!

Autumn 34 w/cf

 

[jshet]

Hey Belivingjesus! You have definetly helped me, and am glad i am getting to know you. I did not read all of the posts from the other thread, but I am sorry that you were hurt and felt unwanted. That is so not the case with me. I am very grateful for the support you have offered me on this forum and the private messages we have exchanged.
i think we all have opinions, and this is a great place to express them. I sonetimes think because we are all so passionate about our opinions things become misunderstood, and it is really hard sometimes to interpert soneones tone when the are replying to us.
i hope you stay with the forum, and please know you are wanted. Jshet

 

[believingjesus]

Thank you Jaimers for your kind words and your advice. You are one of the nicest people and always have been.

Ethan: Thank you for your reply. I appreciate all your advice. I actually never viewed that I was picking fights with anyone on here so to hear your view opened my eyes to a different perspective. I know I have got hot-tempered on here when I saw people on this forum in desperate situations with no responses. It hurts that nobody will respond to some threads because I feel for them and their situation and I know from viewing other posts that someone could say something. When Autumn says I was angry at that point in time when I posted that thread - I know I very much was. I apologize again that I was judgmental and expecting too much of people on here but I could see my son in those pleas even though it was not him - and it broke my heart. I agree that this community should be diverse and that is why I have tried to extend my hand to people on here that feel they were not part of this group even if I didn't agree with their approach but I know there are ways I have failed at that too. Also Ethan I did not know that posts could be deleted entirely by myself. I knew they could be edited but in the case of the Huff Cough thread I had already posted so I just owned up to what I did and didn't think anything else of it until I got that reply back to me yesterday. Can you please share with me how to delete posts entirely and/or threads I made? I don't know all about this computer stuff and my son was always getting after me about that and trying to show me but he moved far away last Fall and my other son is never home. You said if a previous post was misunderstood by a responder then reply with an effort to clarify your position and I know that I already did that yesterday in response to that post but I also know I haven't always done that. I appreciate your help and advice.

Autumn: Thank you for noticing that I tried to help that person with his Pulmozyme and thank you for telling me I am wanted here. Thank you for also noting that it was an accident when I posted on the wrong thread. I wasn't worried over it at all as I had apologized until I received that reply yesterday. I have never been told those things even though I may agree that sometimes I am troubled. I appreciate you explaining that I shouldn't need friends on here. I know I feel this way because my son lives on the other side of the U.S. and he was and still is and always will be my best friend even though he is my son. It is hard going from having him in my life and seeing him and enjoying him to only seeing him every 2 or 3 months for 4 to 5 days. I am sorry for the comment about taking sides but I have felt all alone with nobody the last couple days. I know that was juvenile. You are right that I was shaming this community and was angry over several threads that had barely a response. It wasn't my place to do that. I started to see that when I think it was 2005CFMom replied that I was expecting too much of complete strangers. I started to realize I was being judgmental even though it still angered me. I have worked all my life to try to make myself not judge anyone in any circumstance because I am not in their shoes so when I realized that I was doing just that I have tried to ignore when it happens and just respond myself. I do know that I need to work on my quick temper but I also know I have that because I care but I need to find that balance.

Jshet: Your message was so sweet to me. You are one of the most compassionate persons and I see the tremendous love and pride you have for your son. You are definitely a mom who would do anything for him and you do that every day. I admire you as a mother. I have enjoyed your messages too and I hope you still do that.

I also received a few private messages which meant the world to me. I hope these people know I will be here if they want to message me any time.

I feel I need this forum even though I am sure it doesn't need me. I do find comfort in knowing there are others out there going through similar situations. I know I may seem sad sometimes but that is only because my son is so far away and I miss him. I have decided that I am going to drastically cut back on my posts and only respond when I have to. I still feel I need this forum even for knowledge because I didn't even know what an exacerbation was till yesterday but I also need it for support sometimes. Thank you for your responses. It means a lot.

 

[ethan508]

Two ways to cover your tracks when you mis-post:

1. The first method is to hit the "edit post" function (which is located in the bottom right hand corner of your post) and delete all your words and replace with some verbiage like "mis-post" or "sorry, wrong thread," or "didn't really mean to type that." Good etiquette would use this method if there are already response posts down thread. This allows future readers to understand why there might be a break or non-sequitur in the conversation.
2. The second method, you hit "edit post", and then toward the top of the edit page there is a delete post check box. Click the check box and then click the "delete post" button (located lower right hand of the delete post area). Use this method for a quick delete if no one has responded to your post yet.

Autumn's advice on anger reminds me on some advice I got once. Don't type things when you are angry, and if you do don't send them. So when I read past something that makes me angry I’ll type a big long response but I don't send it. It lets me vent without hurting anyone's feeling. Sometimes I'll come back to the topic after cooling down and then I'm more able of composing a reasonable response. I use this method quiet frequently at work and it keeps me from getting fired.

 

[believingjesus]

Lol Ethan! But good advice. I appreciate your information.

 

[nmw0615]

Hi Believing,

I think anyone and everyone on this forum has something to contribute. We are all here because of our experiences with CF, and since no two people have identical experiences, every view counts.

I think the difficult part, for anyone in an online forum, is that tone of voice is extremely difficult to convey through simple text. I may type a message in one tone of voice, but because everyone else can't actually hear or see me saying it, they might interpret the message in an entirely different way. I am sure some of my posts, if not all of them, have been read in a slightly different tone than I thought while typing them. That's just the challenge of online communication.

Ethan made an excellent point when he said "Has anyone on this thread helped you? How did they help you? Then try your best to do those types of things. Has anyone on this thread hurt your feelings? How did they do that? Then try your best not to do those things." Something I like to do before I post any message is to read it over and see if I would be okay if my message was said to me. Even if I am offering a different opinion, would I be comfortable receiving my message instead of giving it? There have been several times where I have read a post, typed a message out of emotion, and when I read it, I realized that my words would hurt if they were said to me.

This site needs to remain a safe space for anyone to come to and talk when they need it. As for the thread you are referring to, I can see how both your posts and the other commentator's posts were wrongly interpreted. Personally, if I have a different view than the original poster, I tend to not reply to the post unless the poster is asking for opinions.

I think it's also important to remember that we all treat, view, and live with CF differently. It's very difficult for me to understand people who try to hide their CF, just because I have never hidden my own. I'm sure others who take care to hide their CF can't understand why I'm so open about it, and that's fine. When I come to this forum and start a thread, it's because I am looking for advice. When I reply to a thread, it's because I think I have something to contribute. It's important for everyone to post their honest thoughts and feelings, and to not feel attacked for those thoughts and feelings.

I do hope you will continue to be an active part of the forum. Even though you and I don't always agree, I value your opinions and support.

 

[static]

Not much more to add but yes, I think you and anyone else who wants to post is welcome here. If something is way out of left field (internet trolls) then we have good forum moderators to address that.

When posting I try to be as informative as I can and try not to take things too personally. I also try to use "I statements" when sharing my experiences, that way I can share my story/point of view without it sounding like I am imposing it on someone else (telling someone else what to do).

In the end, you can only control you and what you post. Other people will do as they please, sometimes you will agree, sometimes you won't. Personaly, I enjoy hearing different points of view because it might open me up to something I haven't tried/thought of yet.

 

[TreasureGoddess]

Hi Believing. Stick around, we need you. I think any of us can help if we've been through something that we see someone struggling with. I have had to pull back and not reply and "fuel the fire" of those posts that get angry and/or people are posting back and forth and calling each other out. It's helped me a lot.

My strategy for this forum is that I try to check in and see if anyone needs help with something I can answer, post my own questions and needs when something new comes our way and I just had to opt out of the emotional stuff as it didn't help my frame of mind on that day. It's a great community overall. I don't agree with everyone and that's ok too. In the long run, this forum has made my life better as a mom and my son's life MUCH better as a young man fighting CF.

 

[Melissa75]

Believing, Hang in there...or "here" as it were. All we can do is try to be here for each other as best we can.

I like to assume that if my feelings are hurt in some way, it was probably unintentional, and I hope others give me the same benefit of the doubt. Language is tricky, though. (Understatement!)

For example, something as positive as a compliment to one person, if phrased in a comparative way in front of others, can make other people feel bad. Or self criticism, if it can be extrapolated to apply to others in a similar situation, may feel like criticism of all those other people.

We have to balance thinking about the extended ramifications of our words, with saying ideas that are hard to hear, (and not taking a half hour to formulate one sentence . Online, and in human interaction in general, we all work on tolerating being vulnerable and uncomfortable.

Edited to add commas,,,

 

[Dank]

There will always be differences of opinions or ideas. It's how we handle those differences and how we communicate towards each other is how we really set ourselves apart from the rest. We're all in this struggle together. This is a great community and a place for a wealth of information and connecting with people. Try to step back and look at things from different angles.

We all don't see things through the same two eyes, we don't understand things from the same brain, we don't feel things through the same heart, that is what makes us individuals. Try to remember these words.

We'll always have differences in our lives, opinions, or thoughts - it's how we word and phrase them (which is often lost on the internet!) that really helps communication or hurts it.

Cheers,
Dank

 

[believingjesus]

Dank I agree with what you said. All the comments I have received on this thread, except the ones from Jshet and TreasureGoddess and the private messages I received, have all been directed at how I did not respond "appropriately" on this forum. There is not a word as to what was directed at me and it is all accepted on this forum. Except the private messages and Jshet's and TreasureGoddess's message to me the rest are all directed at how wrong I was in my posts. I still stand by every word I said in my post "Where are all the people on this forum when you need support?" and I will stand by it always. I know better and so does everyone else deep down. That is what this forum is for. It is not for calling people names like has been directed at me and others on this forum that are no longer here. I have heard over and over everything I have done wrong. I get it. I have found out who really supports who and it is all good with me. This is my last post unless I ABSOLUTELY have to because of little or no responses of empathy in threads to come. I understand I should not have stated my opinion on this particular article about the young dying and their wishes. I have come to realize in the last few months that if you are in dire need this is not the place to go. I thought this was about support on this forum, not just talking about the troubles of CF that clearly our doctors can best answer anyways. That said I have met a couple very close friends on here and I am thankful for that even though I guess I shouldn't call them my friends - I still do - as we all need those in life.

 

[static]

There is not a word as to what was directed at me and it is all accepted on this forum.

I have come to realize in the last few months that if you are in dire need this is not the place to go.

I thought this was about support on this forum, not just talking about the troubles of CF that clearly our doctors can best answer anyways.

I have met a couple very close friends on here and I am thankful for that

First let me state I hope you find the support you need, whether it be on here or somewhere else in your life.

Now I am going to respond to this post in the best way I know how. Please only respond if and when you feel ready.

I'll start off by addressing your concern about how you felt attacked by stating your opinion. Honestly, I was with you when I read that post and didn't want to think about death on a website devoted to what most likely will cause it. For those reasons, I couldn't even bring myself to open that link on this forum. However, a few hours later I saw the same story while scrolling through some news feeds. Since it wasn't on this site I wasn't so hesitant to read it and actually learned a lot from it and those brave individuals. My point is I get where your coming from. Was that person wrong for telling you this isn't the right place for you? Maybe, but since you came to the forum wanting advice (not them) we can only address you and what you can do. We are all powerless to change anyone else's behavior . As I said earlier the only thing you can control is you.

Next on to your dire need and troubles of CF statement. Forums to me are a place to vent, express concerns, and yes even get advice from peers. Although I highly respect my doctors they do not live with what I go through day to day. If a peer tells me something that works for them you better believe I'm going to at least think about trying it. What they are not is a place for emergency council. As people have stated earlier there is something lost in translation when typing on a phone, tablet, or computer. As you just read that you are probably thinking "this person doesn't know me and what I need" and you would be correct. The only people who can properly help and support you in those dire situations you are referring to are the people who can sit down with you one on one and get to know the real you, not a screename. If you reach out to health care members of your community I'm sure you can get that real support.

Which now brings me to the last quote. I'm glad you found individuals on here you can relate to and get support from. If you feel they are your friends then they are your friends and don't let anyone tell you otherwise. How they make you feel is more important than a title.

 

[believingjesus]

Static - I read your post early this morning. Thank you for reaching out to me publicly on this forum. What you said meant so much to me. I did feel attacked by two people on this forum, one who was clearly just mistaken but at the same time I have always apologized for anything I have done on this forum that could have been taken wrongly or that I said in anger. Always. I did not feel I or anyone else should be told that maybe this forum was not for them. I did take it the way it was said. I have been living with this disease for 25 years affecting my son who means EVERYTHING to me. To be told that any of my feelings I have are not for this forum was completely hurtful. I have never come to this forum in my own dire situations I have faced with CF as my own dire situation the last time was in 2007 and I only became a member then. I have come sometimes to this forum sad and confused and guilty but I have also come to this forum with sincere compassion for others on here and empathy and the deepest desire I have to take any and all of their pain away and try to encourage them. Then I am told I should reconsider this forum. No apologies.

When I have posted that people have come on here in dire situations seeking support with little or no responses I meant that. I was not talking about myself. When I started a thread about this and it got all "hashed" out and talked through like Autumn stated on this thread that there was a constructive and respectful discourse on this subject and then still several threads come up after that and it still happens it makes me think "WTF!" I know some people are on here every single day and some are on here all day long and I know they saw those posts and did not respond. I know that not everyone has to respond to threads and possibly could miss some due to their own situations in life but when someone posts in such a hard difficult situation and it gets bypassed then it totally breaks my heart. Even if nobody has any answers to their situation on this forum they could, in the very least, have responded with words of empathy and encouragement, but did not. These posts are not just posts - these are actual human beings behind these posts living this life and coming to this forum for understanding, support, encouragement, and advice. Even one of those things would be appreciated.

I understand the thread about dying and how you felt Static as I felt the same and we both know it may have helped someone out there. I was only stating how I felt seeing it as I am trying to live in the present and it was hard. I clearly stated I was only stating my opinion many times but I guess I should not have stated my opinion.

I also want to say to those who have felt they were not part of the "in-group" and have stated that they felt that way on previous threads that there is no "in-group". We should all support all on this forum. If someone comes to this forum with CF or without CF or experiencing CF somewhere in their life maybe through their job or through a friend experiencing it or whatever - they should be supported just like everyone else. To even come to this forum is admirable and to try to talk about a disease that hurts so many people and to share their advice is also honorable. There is no "in-group". If there is an "in-group" or an "out-group" then I certainly do not want to be part of either one.

And I am so thankful for this forum even though it gets pretty rough on here sometimes as I am blessed by several people on here to be able to know the "true" them and have them in my life. Thank you Static for reaching out to me publicly and supporting all on here always. I really appreciate it.

 

[Angelo]

remember, that as soon as you accept Jesus and align yourself with him, the world will hate you as they hated Him. So if no pastor or teacher told you this, you need to know that you will have tribulation in this world, but be of good cheer, for He has overcome the world. If He is your messiah, then you also have overcome the world and will have your eternity with Him. When they persecute because of your faith, then Praise the Lord, for your treasure is being stored up in heaven.

 

[believingjesus]

Wow Angelo. I have read your post before and I could tell you were also a born again Christian. I appreciate your words but I do not feel anyone has done anything to me because of my faith on here. I am still human even though I accepted Jesus when I was 13 years old and He completely changed my life in one single moment. I am 50 now and I wish I could return to that time when the Holy Spirit came in my heart but I can't as you can't accept Him twice but I know He will never leave me but I also know I fail all the time, every single day, and I am so very far from perfect and where He wants me but I know He will never leave me. I appreciate you responding to me. I needed that.

 

[Angelo]

BelievingJesus, You can still have amazing experiences with the Lord. We live from Glory to Glory. Stay focused on what Jesus said is the first and great commandment, then on the second. The entire law hand on these two. You will find those two in Matthew. The more your immerse yourself in the first one, the more amazing experiences you will have with the Lord. Don't settle for the lie that it is down hill after your salvation experience. The reason many people have a down hill experience is because they forgot their first love--they quit immersing themselves in the first and great commandment. Prob not the forum for more in-depth conversation, but if you want to chat more or even talk, pm me and I will send you my email and ph.

 

[believingjesus]

Angelo - Thank you for the reminder of my first love. He is my first love. I know I am to love the Lord with all my heart, all my soul, and all my spirit. I do love Him and if I ever have to I will die for Him too. It is hard when I want that back and have wanted that "freedom" and "love" and "forgiveness" I had come inside 37 years ago. That is the only thing in my life ever that there is no earthly understanding or comprehension for the joy and freedom and love I knew. I do want to have amazing experiences with Jesus still and not just know He is always with me even when I screw up or whatever I do. I appreciate your offer to me to talk with you and I'll take you up on that. Thank you truly for reminding me.