"why me?"

[LilTricky1886]

To all of you who complain, and complain about your health problems. Do you think maybe you should be thankful? You complain that you've had to have a surgery, that caused you to take more medication to keep your body from rejecting a new organ, or your sinuses became blocked again, all sorts of things. Why can't you see, amost anywhere else in the world, you would probably not even be alive today, if you had managed to survive, the access to health care that would actually do repeat surgeries, or provide you the medication you need, access to insurance, be grateful youre even able to complain.

 

[ihatecf]

do you have cf ?

 

[anonymous]

Wow Amber Wow...don't even know how to respond to that one. So I will keep my mouth shut so i don't flip.

Margaret
Double Lung tx 11.11.04

 

[IG]

Really given the fact that there are around 30,000 cystics and only 1,000 or so are on this site, that's including friends/siblings/parents etc. We come here for support for our problems be they mentally or physically. I really feel that you need to re-examine what you've just said. It's rude to us on here and for the CFers not on a forum to get support when they feel like sh*t and want a friend to talk to. I'm glad that you obviously don't have problems, but that doesn't mean that the rest of us don't, and we like support for them. If you're not going to be a productive member of this board and only a rude and disrespectful one then you will eventually tick off enough people and start a flame war [probably with this post] which might or might not result in bannination.

Oh and I have to add, I at one point watched a show [one of those morning shows] where a man went blind? Or possibly something else. He stated he never asked why me. I laughed at that, it's stupid, <i>we are human, we have emotions, we feel.</i> If you didn't have moments of down with this disease then when you're up you truly can't appreciate it. 'oh people have it worse, I'm so much stronger for this disease, it taught me so much, etc' I felt sorry for this guy, he must have had his emotions buried so deep. I know there are truly happy people out there but the happiest, with a chronic illness will at one point ask themselves 'why did this happen to me, would I be better off without it, I hate how this sets me apart, etc.'

 

[miesl]

This is a place people come to vent. If you're just going to get up on your high horse and say "It could be worse, be thankful that blah blah blah blah.", you are of no help here and obviously fail to grasp the concept of a support forum.

Right now, the worst thing happening to that person is what they are complaining about. Compared to the general populace such **minor** concerns as "surgery" and "not rejecting new organs" are well - What's a word that means the opposite of "minor"?

Really, I think you should stuff it. People are coming here to get support for their complaints from people who actually understand. You have no idea how they are in real life - most people understand how lucky they are to have the health care they do. That's not a reason not to complain about the stuff that sucks.

 

[wallflower]

I'm not sure what it is that set you off, but if you are implying that Americans with cf have charmed lives compared to others, you have done very selective reading.

There are people with cf (yes, in the good 'ole USA) who DO have problems getting quality healthcare, do NOT have access to medication or insurance they need, or surgeries to improve or save a life.

Because of the physical appearance of cf, many people think it's no big deal - be happy to have it because there are so many worse things in the world. You have a cough? Suck it up and take a cough drop. You have treatments and medications to take? Suck it up and do them where it won't bother me.

But the truth is, CF is a TERRIBLE disease! It is the people who deal with it that are great - not the disease itself. CF causes physical and emotional pain, and this forum was created expressly for the purpose of complaining, comparing and sharing.

Maybe you are at a point in your life where this forum is not useful to you. But when it is, we will still be here.

 

[Allie]

2 good things have come out of this post. 1) I'm in a horrific mood this morning as I prepare for my first thanksgiving alone, so I can explore the full range and timbre of my b****iness. 2) It's taught me not to generalize, as I tended to assume CF teens were more mature than the rest of the group.

Sweetheart, you're 19. I teach your age group. I know you think you know everything and have the answers for every one, but let me tell you something. Life is hard. It causes pain. Thank your lucky stars that you are oh so special that you can call sugery a minor concern. Some people, for some odd and bizarre reason, don't like getting sliced into. But their loss right? Cause I LOVE it.

Also, we have actual problems. Which is why we're on SUPPORT boards. Now, if you don't have any reason to complain because your life is all sunshine and sparkles, fabulous. Then go. You obviously don't need us anymore than we need you. Some of us have experienced things that'd curl your hair. Call me when you're on o2 all the time, or waiting for a lung transplant you're not goinjg to get because of the cheap government, or when the love of your life dies in your arms. Then call me, darling, and we'll talk about how that life of sunshine and roses sometimes gives you a sunburn and pricks you with thorns.

Step off your high horse, I have no tolerance for it right now.

 

[anonymous]

Ummm, Amber has CF too (look at her sig line). She's entitled to her opinion even if you do not agree with it. No reason to be mean to her. I don't agree with her, but I don't think I need to be all ugly about it.

 

[miesl]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>No reason to be mean to her.<hr></blockquote>

Not to be petty - but she started it by inferring that we're a bunch of whine-y-pants.

We never said she couldn't have an opinion. Look - she can have an opinion. That doesn't mean we're going to a) like it, b) agree with it, and c) argue with her about it.

 

[rose4cale]

This is a joke right? The people here are not suppose to vent about organ rejection, another surgery, more medications and so on? Are you kidding me? We hear people every day complain about things like a stuffy nose and a paper cut, and you think we are whiners here? Am I suppose to be sorry that I feel robbed that my son is going to suffer a lifetime of illnesses! Or sorry that I have to see him and every one here suffering. Are we suppose to be grateful to the medical world that they can put us in the poor house? Good for you for being thankful. Good for you for feeling that you have it all.

I AM grateful every day that my son can lift his head, look me in the eye and tell me he loves me. But that doesn't take the reality of his future away.

 

[anonymous]

"I do think that dwelling on your problems makes them worse, but venting them is very helpful, and this is a safe place to vent. "

LilTricky...Just to refresh your memory, this is a quote from you from another thread....apparently you are contradicting yourself here.

 

[Lilith]

Exactly what the hell are you trying to imply here? Not all of us are whiners, and we come to this forum for support and *gasp* to vent!!! OMG!!! I AM grateful, and just because I vent sometimes about my issues doesn't mean I'm not.

 

[ihatecf]

Amber, I read your post yesterday but I was in a bad mood and didnt want to reply bec I would attack you. However, unless you are enjoying perfect health, I cant see how you dare to come up with a post like this knowing all the problems a cfer goes through in his life. Frankly, I believe that cf can be the worst disease on earth when severe. You almost drived me crazy yesterday. If it came from an outsider who knows nothing about cf I would take it and move on, but from a cfer!
Everyday, I hear complains from healthy individuals about a cold, headache, school work, college stuff, family problems, and stupid things I cant recall now. It drives me crazy and I wish that they get in my shoes for one day and see what will they do. I simply cant believe that you posted this as its getting me sick... We have the right to vent and complain, and what a better place to do it than here?

 

[cfgirl2008]

Excuse me! Every one has the right to whine if they want. Every one is human they all complain with a disease or not! I dont appreciate what you said because you probably whine about things when you were little and probably still is. no matter what age everyone is going to whine. so accept it.


tiffany 15 w/cf

 

[Purplelungz]

Amber I am going to ask some serious questions and i hope you will answer them, maybe that will help me to understand where you are coming from. How bad is your cf right now? Is it mild to where you just have to take a few meds? Or are you actually on a transplant list or been transplanted? What made you come to this conclusion? Did something happen to you or a friend that made you think this way?

I understand that we should be thankful for the things we have. I really do. I am really thankful for the health that i do have, the good times i have, the doctors I have, even medicaid even though its a pain in the butt and i am scared every month i wont get my card in the mail and wont have any medical coverage. Quite frankly without it i would go without medications and have to choose between food and meds. I truely am thankful for the things I am given. I have seen many friends pass away because their health was in much worse condition and even because they couldnt get medical coverage, here in the US and canada and even england.

But let me tell you that doesnt stop me from complaining, I just cant help it. No one can keep from complaining. At some point someone will complain. Its not healthy to keep the feelings bottled up, I know from experience. I tried it at one point, the end result was not pretty, in fact it made my physical and mental health worse. Even if a person was to keep their feelings of "why me" and things like that to themselves, it doesnt mean they arent thinking it. Just like everyone else said its humand nature to complain about things, serious or silly. This is a support group where everyone comes to talk about anything and everything, to complain about anything and everything because everyone here knows where that other person is coming from. Its easier to talk and complain on here than try to with a friend or family member.

I did not mean this reply as rude or mean. I really do want to know why you think this way.

 

[Cutecurlz]

If in fact you do have CF then you would know what it's like. The ppl on here DO have CF and this is where we come to vent or "WHYNE" as you put it. I was diagnosed at the age of 3 yrs old and have had to deal with CF all my life, the bad and the good. My younger brother (28yrs) has CF too but he's not as lucky as me. He caught pnemonia? I think that's how you spell it, and because they didn't catch it in time he is now on a lung transplant list. So if you don't have CF how dare you come on here and complain that we are whyners. Like someone else said....this is where we feel comfortable and getting the advice that we may need when no one else can help, ppl on here now what all us other CFers are going through or will be going through.

 

[Emily65Roses]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Allie</b></i><br>2) It's taught me not to generalize, as I tended to assume CF teens were more mature than the rest of the group.
Sweetheart, you're 19. I teach your age group. I know you think you know everything and have the answers for every one, but let me tell you something. Life is hard. It causes pain. Thank your lucky stars that you are oh so special that you can call sugery a minor concern. Some people, for some odd and bizarre reason, don't like getting sliced into. But their loss right? Cause I LOVE it. <hr></blockquote>

Awww come on, Allie, don't ruin my fun!!! I'm 21 (close enough to 19), and I DO know everything!!! Don't burst my bubble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Hehehehehehheehheee.

 

[abloedel]

Amber - I can appreciate where I think you're coming from and that you should be thankful for what you DO have....and I AM (in fact just posted a list of what I am thankful for), but by the same token, that means I have things I am completely UNTHANKFUL for and sometimes being able to vent about how I feel really does help.

Sometimes, things just really suck! And sometimes, they don't. And sometimes, things are wonderful. That's called life. And you can share ALL of it on this board....that is what makes it so great!

 

[JazzysMom]

I am not sure how to respond to this. When I was 19 I was able to skip my treatments, able to not consider myself "one of those people with CF" and able to grab the world by the balls without huffing & puffing. OH the good old days. Well I grew up, got older or matured depending on what you want to call it & in the process I received a rude awakening about how CF works. We beat the odds only to face so many other issues associated with CF & "old age". We deal with a lot on a daily basis. Do I whine? I try not to. Do I have a reason to? Some days. Do I like to whine? No necessarily. Do I need to whine? Sometimes.....Not everyone has the same tolerance for pain or obstacles that are thrown at us. Even the best of us have break downs. To not be able to come here & vent or whine, laugh or cry, be free to say what is on our minds for that minute, hour, day, week, month or year....is that what you really want, Amber? I hope not because I gaurantee you that one day YOU will need to come here & vent or whine, laugh or cry and want to be free to say what is on your mind that minute, hour, day, week, month or year AND I would bet that almost everyone would have an ear to lend to you. You might want to rethink how you said things because if it was meant the way it sounds.......you need a reality check on life never mind life with CF!

 

[JustDucky]

Hello Amber..I am not going to attack you in anyway, just express my opinion on your topic. As far as you expressing that we should be thnkful for the medical treatments avaiable to keep us alive, yes I am grateful that I do have access to health care, if I was born in the 40's, I wouldn't be alive because I rely on technology of a ventilator to stay alive, utilize all of those fancy antibiiotics to keep my bugs in control etc... but that doesn't stop the suffering we feel. Sometimes I have good days, sometimes bad...I feel comfortable posting about the good, the bad and the ugly in my life in this forum because I feel that I am understood. The posts that I read regarding issues that are common to CF'ers are those of people who just need support or advice on how to deal with what is bothering them at that time whether it be sinus surgery or IV's or yet another tune up in the hospital, even relationships and finances come into play here. Let's face it....who better knows what another CF'er is going through than another person who is going through the same thing or have experienced it? That's what these boards are for...there is alot of diversity amongst us, yet there are alot of similarities as well. I know that sounds confusing, but many of us have gone through the medi port decisions, worried about finances, been through alot of surgical proceedures, have digestion issues etc...those are the similarities that I see. For example, someone might post that they have to decide on a G-tube to give them extra calories and are scared about the proceedure and what to expect afterwards. On this forum, there is a very good chance that someone will be of help to this person. Or...if someone is having a particularly bad day with coughing their lungs up or are just feeling down in general, they should feel comfortable posting about it. Venting helps, I worry about those who stuff it all in. Let's face it...CF has it's ups and downs, I can feel good one day and be admitted to the hospital the next so yes, I do cherish each day that I am here and am thankful for that.
I hope that you are doing well, Jenn 33 w/CF, vent dependent, musc. dystrophy