Life is too short

[anonymous]

Life is too short for all of this bickering, and I am 100% certain that we all have bigger worries in life than what most of the discussions have led to.
We come to this forum as a means of support and I am not seeing much of it these days. Can you imagine what the parent of a newly diagnosed child would think when they came to this forum and read the messages.
I was going to start a new thread tonight because I am having a tough time with my daughters condition. Most days are good, but recently I am in a rutt. I wouldn't dare after some of the things I have read, because I would be afraid that someone would twist my words and get offended, only to upset me more.
Can we please get back to supporting each other!

 

[anonymous]

How is your daughter doing? and second how are you emotionally? There is still people on here that want to listen to other peoples feeling and not make them feel like an ogar. I have trouble some days coming to terms with my emotions about my son but when I wake up and see that smile on his face thats all it takes but I know I can never imagine what he is going through. But I hope one day that he can get on here and express how he feels without the fear of being bashed with all the trouble he has. Hope your daughter and you are doing well tonight.

 

[CFWife]

I just joined this board and I am ready to leave after reading all of the fighting that is going on. I came here for support and all I see is bashing. I think I will just leave and stick with my other CF online support groups.

 

[anonymous]

Hi,
I am the original poster. We had clinic this week and I always find that hard. My daughter is 5 yrs old. She has a wet cough they can't explain and are waiting for her culture results to come back next week, so it is a waiting game. Her PFT's are high and her lungs sound clear but it worries me just the same. She has had pseudamonas for abut 6 months now.
Secondly they have been concerned about her weight for about a year now, but this time she actually lost a bit of weight. They were going to adjust her enzymes but I wanted to wait for the dietician who is on holidays and she should be back next week as well.
Usually I handle things pretty well but every once in a while I have trouble accepting the disease, and this is one of those times. I know things will turn around but it is hard to smile when you feel like there is nothing you can do to make your child feel better.

 

[anonymous]

Hi,

I'm very happy that you returned to post. My daughter is only two years old but has had a difficult time. During the most difficult times I often refrained from posting. Why? I don't really know. But it is at those times that we should reach out to others who know and understand.

Has your daughter been treated for the Pseudomonas? (i.e. started inhalation Tobi and/or oral Cipro) Her loss of weight is concerning because it can be an indication of a lung exasperation. Samantha cultured Pseudomonas early on and initially it was not treated, but she was put on Cipro and Tobi soon afterward when her coughing increased and her weight problems continued.

Try to remember that there will be good times and difficult times in dealing with CF, but during the difficult times I always try to focus on my daughter's inner strength, she amazes me.

Things will improve soon, please keep posting-

Maria (mother of three daughters, the youngest, Samantha w/cf)

 

[anonymous]

I am new to this and I too have thought oh my gosh on things that I have read, it is a shame! My daughter is going to turn 13 soon and my son will turn 14 soon. I have always wanted to have others to talk to and I am now glad that I am just now signing on. The negative comments and bickering would have probably did me in. I have been dealing w/ cf since my daughter's diagnosis at 1 yr. 5 days old. My son was diagnosed at 3 ½ yrs. I have grown strong in my family and friends and w/ God in the walk w/ cf. I just now thought that I would be ok joining due to my daughter always being on here. I am a shame I didn't check it out more only to those ignorant people who want to bicker about their ignorance. What nonsense! My daughter and son are night and day difference. My son has only been hospitalized 1 time w/ his cf and my daughter through hospital / home iv has been almost 30 times. To the mother who just wanted good support, I know what you are going through. My daughter is just now weighing a little less than 50 lbs. and now has a feeding tube, very low pft's, on oxygen, so on so forth, but I thank God that he is in control of her and he has the final say! People would say I am in denial, but I am not, I just have faith and trust in God. Without that I would have nothing because it has been a hard, slow, walk.

 

[Emily65Roses]

CFWife: This is the first time in a while that this kind of garbage has broken out so rampantly. Every once and a while someone/something wreaks havoc and a few threads get locked. But that's not the way it is all the time, and even when it is, you can generally ignore the arguing pretty well. I have skimmed the locked threads, but I don't even know what the arguements were about because I didn't stop to read. I don't care enough. At the same time, I love it here. This has become one of my two favorite CF sites to come to, ask advice, and whatever else. Give it a second thought before writing it off entirely. Maybe come back in, perhaps, 2 weeks. I hope by then this spell of fighting will have passed, and then you can see what it's like here most of the time. There are a bunch of losers here, of course. Oh man that Julie, she's terrible... and Jarod makes me want to stab my own eye out... Jennifer, Mary, Candice - ICK... and Coll and her mom Kathy? PURE NIGHTMARES! (Haahahahaaaa <img src="i/expressions/face-icon-small-tongue.gif" border="0">) But there are also really cool people with whom I get along famously (like all those "losers" I just mentioned above <img src="i/expressions/face-icon-small-happy.gif" border="0">). I wouldn't give up my pack of losers even for all the fighting that goes on here. <img src="i/expressions/face-icon-small-wink.gif" border="0"> <img src="i/expressions/heart.gif" border="0">

 

[anonymous]

Bickering? hm. This is my first time visiting on here. Glad I missed that. Can't deal with negativity. Hope all stays well!
Pattisunshine mom to 6mo. old w/CF 4 yr old no CF

 

[EmilysMom]

Emily is right.....when you ask her about her friends, she mentions two sets of friends. Her "real" friends and her "virtual" friends. But I think her "virtual" friends are more important to her sometimes becuase those are the ones who are living the same life she is living. Mike, Ryan, Jay, her family...we will always be here for her....but her CF people are SO IMPORTANT that she counts them as true friends also.
So to all you PEOPLES that she mentioned in her previous post...thanks for being there for her. You are very important to her and I hope you continue to be around for her and everyone else as long as you are all needed!
I am done being sappy now ! *wipes eyes, gets up from computer and walks away*

 

[happywithcf]

I am new to this web site and I am glad that I didnt see the things you seen. I am 28 w/cf and I believe that god gave me this illness because he has a great purpose for me. I about 4 months ago I think I found out what my purpose is. I start a home base business because I couldnt do the 9 to 5 job and I needed to hekp my husband out financal. Anyway with this business that I love I tell my story and help others. For instance I just got back for a convention for my job and at the convention I got up and talk about my illness and how working for this company has help me in both areas of my life (money and health) I started use their product which I set up accounts for and I now have been out of the hospital for 8 months before then I was going in about every 3 month for the last 3 years. So now I tell my story and I have help 2 other cfers to get on the products and hopefullly they help them. But anyway I hope your child get better and just remember that she will get stronger because of cf and will propably handle things better then most kids. So when you get down because she is sick just remember god put us all here for a reason and if he gave your child cf then he know that she was different but special.