Where are all the people with CF on this forum when you need support?!

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Sharie L

New member
Hello,
I am new to this forum, but I've tried to answer a few people who were in need of support and I wasn't able to. I'm not sure why but my message didn't post. I am the mother of a wonderful daughter with CF.
 
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believingjesus

Banned
Ah! Thank you very much! I'm sorry that happened to you and I appreciate that you tried. It's very nice to have you on this forum. I hope you daughter is doing well and we are glad you are here.
 
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believingjesus

Banned
I am not sure if you all think I am "testing" you? There is a thread that does not explain itself so idk what that is? Sorry that the facts that I just stated in the post above this one (that I just posted a couple hours ago today) are the whole truth. I know some people could have been busy but with all the other responses that are posted on here there could have been a word of compassion or support for this person in between the several days between their two threads on the same subject and then the days after! Also there could be support for all the others who are in desperate situations and come on here looking for support and get one or two responses. Pitiful. If I get outed by stating the truth then so be it. I have faced waaaaaaaay worse things in life. I come on here for the same reason everyone else does and it is a shame that even in adult life there seems to be "cliques" or some who only support some. It isn't as if we all don't have enough worries in life already.

I apologize for the "test" question. It probably was not pertaining to me as it was on here - posted by Imogene - and disappeared and was probably just that - a test. I am probably paranoid now as I know what I said may not sit well. I DO feel, however, that ALL people should be supported when posting on here and that surely everyone on here has some sort of compassion they can pull out of themselves and share with others.
 
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Gammaw

Super Moderator
Good Morning Believing! I'm sure your thread has helped many overcome any reluctance to post, for whatever reason, and an appreciation of the worth to lending words of encouragement to others! We all need support, don't we! Thank you!
Blessings.

(P.S. Many, like me, may not see threads unless they are contained in the daily digest.)
 
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believingjesus

Banned
Gammaw - If stating the truth causes anyone to be reluctant to post then so be it. If ALL are not included in the support system then what is this forum worth? I did not know that when a thread has started (right next to another one by the same person) that nobody could see it? And, I AM sure that it was in the daily digest as I saw it myself for awhile. Then there was another post but out of 2 threads over the course of 6 days there was barely a response - let alone a word of encouragement or support. I have heard every reason in the book why this happens so I guess it will still continue to happen. I hope you have many blessings today too.
 
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meech

New member
When I first came to this board last summer desperately looking for answers I found some great people here. They helped push me in the right direction to finding those answers. I still come here for knowledge. I personally don't respond too often because I still feel I am so new to this cf journey that most days I am barely keeping afloat. I have no idea what advice to offer someone else as my knowledge is still lacking, but my heart goes out to the struggles each of you face daily whether you or your loved one has cf.
 
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jaimers

Super Moderator
Hey Believing, Imogene is the founder of the site and an incredible person. I'm sure the "test" post was due to some website glitch that was being worked on/resolved and had nothing to do with any of us in particular.
 
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believingjesus

Banned
Thank you Meech and Jaimers, yes I already knew she was the administrator but thank you in case I didn't. She must have been doing a test of some kind. I am glad you found support Meech. I know that many have found tremendous support as I mentioned previously but I don't understand what happens sometimes when people obviously can read and don't respond. I guess I take offense when someone is not supported that is going through a really hard time. I know I hate hard times and they can really get a person down and I hate that people have to deal with CF in the first place and then on top of it have all the "extras" that are a result of cystic fibrosis. If they didn't have CF then they never would have any of the extras. I'm sure some people think that it will never be them but the facts are that bacterias do come to people with CF because of the thick mucus in the lungs and many children that are now adults and their families were not told my doctors growing up of the dangers that are now common knowledge. Even 8 years ago they insisted to us something quite different than what we now know. When people reply on here that they don't want their children to get "such and such" bacteria (whatever bacteria) they have to understand that there are people reading these posts that are already dealing with these things and the effects the bacterias have on them physically, mentally, emotionally, etc. and it is pretty hard hearing how others don't want what they didn't want either but are faced with. I think compassion like a kind word of encouragement that is in truth or a bit of advice from someone going through the same thing would be so nice. Or someone who is getting rejected for transplants and their parents and are so down and out about that reality and nobody responds?! I honestly hope the whole forum can do better to watch out for people that are experiencing a decline in health and are afraid or anything like that. Some people with CF are healthier than others but that is not the fault of the person who is not, it is just their genes or the way it is. Nobody wants any of this and I think people that seem to purposely ignore threads really need a reality check as it could very well be them or their child someday. I believe some thoughts are - oh' well, I'm glad its not me, I'll go on to the next thread. That obviously is what happened.
 
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windex125

Guest
I think you Believing shd appt. yourself the official response for people who do not get enough responses to their questions/issues. I hv been reading yr rants for several weeks now, and to be perfectly honest you are pissing me off. I am a very sweet person if Isay so myself. I respond when I feel I hv something of knowledge or help to that particular person. I've been on here several years myself. there hv been times when I hv not gotten any answers. How dare you attack people who are not responding with enough compassion in yr eyes. I don't get it? The majority of yr posts hv been negative abt this community being lax... well that may happen sometimes when you may not hv the information, feeling quite negative yourself, doing double treatments, there can be many reasons. STOP it already. I just spent over a week in the hospital for another pancreases attack. The following week, I slipped on the ice and broke my wrist in2 places, so typing this with one hand is harder than expected. I in the shitty feeling abt my life right now with a cast that I can't move for 6-8wks. but I'll deal with it. I am more or less trying to be nice about this, and some of my fellow CF's may not agree with me. But I'm taking that chance. Enough is enough. Pat-60/female CF and a whole lot more
 
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windex125

Guest
One last thing do not ever say anything abt Imogene again if it was not for her we
wouldn't have this site. I had another idea why don't you start yr own blog....this ma help you to help others....
 
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ethan508

New member
Likes and comments are a little like hugs. Some people need a lot and some people need a few. Some people are really comfortable giving them and some people aren't. For me 1 great hug is better than 50 obligatory ones, but I do feel sad with zero hugs. That being said, zero hugs are better than a forced hug (especially a forced hug from a near stranger). Hug someone (or comment) when you feel like it will help and know that if done well, it won't matter who else joins in.

The best assurances don't come from the perfunctory sympathy of many, but the sincere understanding of one.
 
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2005CFmom

Super Moderator
I am no computer genius, but want to point out something I heard/learned long ago. You can't trust the "754" people have read that post. There are "bots" out there and the skim the post for info. That is why many people when giving out there email address will write it out like thisismyemail at gmail dot com. Because otherwise the skimmers pick up the @ and .com and sell off your information.

The 3 things we are here for... support, education, and hope. I'm here more for the education part of it. When I have information that I can share, I share it. But I am not a touchy, feely person, so those posts that want that I usually pass on because it is not in my nature to nurture a complete stranger.
 
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believingjesus

Banned
Thank you 2005CFMom for your post. I am beginning to feel I am expecting too much from complete strangers like you mentioned. I guess everyone else likes it the way it is, I hope EVERYONE does but it really does no good to try to get anywhere with this and it is still the same. I will try to watch out for people who really need support or a friend on here through private messages but I don't want to cause any negativity to anyone I have a heart for and am trying to help. I feel everyone must like the way it is and those who don't get many responses maybe they don't care and I care too much. I know I can not change anything by griping about it on this forum. It is what it is, just like everything else in life. It is a wonderful forum though and has helped many tremendously who have needed it. I appreciate you helping me to see I probably care too much.
 
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Michele Nyman Purciello

New member
I read, but it took me 1/2 hour before I could figure out how to respond!! Now that I learned that so difficult piece of technology, I will respond when I feel I have something valuable to say. My son is 32. His pfts are around 80% and his oxygen level is 100%. His is in a clinical trial now. His mutation is 1 delta 508 and 542x. He feels his secret is water soluble oregano oil which he
mixes with saline in his nebulizer.
It is not proven nor suggested by his physician. My whole page is dedicated to spreading awareness, and hoping to actually see the purple rose as much as the pink ribbon! Why that does not happen is beyond me. My son also uses the vest. I encourage him to enjoy his life, be happy, follow his dreams...I have been there for him since birth. He used to cough up blood. I researched and recommended hyper-tonic saline to his doctor. Since he has been on that we have not had an incident. I realize things could change any day. There is no bubble to put around him to protect him from contracting any bacteria. I respond on facebook to people a lot. What do you say to a parent who loses their child, when that is the very fear you live with every breathing moment of your life? There are no words that touch that pain. Sorries, and prayers. Vertex is not the only pharmaceutical co. out there working on this. Call the disease control center in Bethesda. Research on line. UK has many ideas, as does Australia, Israel, Norway, etc. Do not limit yourselves. If you are not happy with your dr. find a new one. I am fortunate to be near Boston where I love my son's Doctors. Communication is very important. Growing up is tough enough, but going to the nurse for your enzymes, brings about questions, and I recall many times the nurse was not there, so my son went without. Talk to your principal. Get involved in every aspect of your kids' life. They grow to resent you as they reach their teens, but so what. Down deep they know you love them. Love to you all. just a mom. (L)
 
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mkpr13

New member
believinginjesus,

I recently came to this forum and found it a nice change of pace. All of the posts I read were very supportive and very pleasant to read. I don’t post very often (asking questions or responding). I like to read a lot. When I signed up for this site, there wasn't anything that said I had to respond to the posts that I read. This post is the first post that I have read to be very unsupportive to others. If it really bothers you to see no responses and “745” views then you need to view the posts differently (it is not shown in the daily email updates). Life is too short to make others do what you want them to do. Be an example to others. Some will follow your lead and others will not.

I will not be reading anymore responses from this post.

Best wishes.
Melissa
 
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windex125

Guest
thank you for yr support believing, im really a nice person just hv a different way of seeing things hvg lived this long with this horrible disease. you go though different phases physically and mentally, as many hv stated. Melissa please don't let anything negative you may hv gotten out of this particular thread not bring you back. it truly is a wonderful site in many aspects. very informative for sure, as we all hv the disease, but all face different challenges with it. on a different note has anyone read a great book lately??? my book club has recommended 3 losers the last 3 reads I just bought the girl on the train for my kindle hope it's a winner... any suggestions ??? hugs to all - Pat-60/cf
 
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