Luke's response to his daytime attack

[luke]

Since so many people decided to tee off on my while I was at work I would like to take this opportunity to retort. Of course, the thread was locked so quickly I couldn't respond there so I will start my own. Those who have me pegged as a "nut case" because I did not have a "happy childhood" only prove that you know nothing about me. I am very happy in my life. I have a dedicated wife that I adore as much as she does me. I have a brother that I couldn't be closer to and friends that I could ask anything of. I manage an entire state for one of the largest home care companies in the nation. I hold three degrees, own a house, three cars and earn a pretty decent living. With all of that being said...I have everything I need in life outside of a cure for CF and am a genuinely happy person. The thought that I need counseling because I will not tolerate the thought that people who know CF are equal or worse off than those that have CF is preposterous. When people (parents, spouses or whoever) begin telling me how tough it is for them I have absolutely no tolerance. I would like to say that my lack of relationship with my mother had nothing to do with my remarks but that would be lying. In reality, it probably had everything to do with it. These parents telling me how tough it is for them taking care of their child reminds me of my mother, grasping for any attention she could get. I know how hard it is on my wife starting my IVs, doing my CPT and just dealing with my disease. But, she knows that I am the one gasping for breath some days, I am the one coughing up mouth fulls of blood, and I am the one that has to fight everyday to stay alive. So even though she knows how important she is to my wellness she knows that when it comes to my health I am the one who chooses to live. One of the things I love about her is not one time has she ever commented about taking care of me, she just does because she loves me. I guess that is what I am getting at. When you do something out of love that should be it. Nothing more needed, just the feeling that you helped someone you love. Many mothers and fathers come on here venting about how tough it is and that is fine, they need to talk. But this is the first time I ever percived a parent needing recognition for it and I was appalled.


Now onto the ridiculous statement about me not being thankful for healthcare workers and drug companies. Yes I am thankful that people dedicate their lives to their chosen profession. But lets not get too crazy here. It is not like nurses and therapist are working pro bono and I havent seen anyone giving away Pulmozyme lately. So am I thankful for pulmozyme? Sure, probably just as thankful pulmozyme is for me at $2000 a month. For the record those who dont know, my wife is a RN and I am a RRT so I know what dedication those jobs take. But trust me if they were done for free there would be many more accountants out there.


your mentally healthy 30 yr old CF'er Luke

 

[anonymous]

Luke, I agree that you got bashed pretty hard. I understand where you are coming from on the original post, but that doesn't mean that I agree with <i>everything</i> you said (or Seana, for that matter). I think it got pretty out of hand, and hope that everyone can agree to not agree and move on.

As the parent of a child with CF, I will never ask for recognition for taking care of her. I am of the same opinion of your wife...I do it because I love her and for that reason only. I want to see her grow and live a long, full life. I would hate to wake up each morning and wonder, "Is this the day, or will it be tomorrow, or next year, or could I possibly be blessed to have 10 more years?" I grieve at everything she will have to go through because she is the one who will be going through it physically and mentally. I am just there to support her and guide her.

Hopefully everyone can go on, and we can all give each other the support we need.

 

[anonymous]

Well said, Luke. Although I am a parent and not a patient, I too believe it is much harder on the patients. It is funny because a lot of my friends will say, "I don't know how you do it, it must be so hard on you!....You should be commended." While this is true (the fact that I do a lot and it is hard), I don't expect any recognition.....it is my daughter who goes through all the treatments and deserves the pat on the back (other than her pat pats...ha ha!!) She is the one who has to sit for 1/2 - 1 hour at a time doing treatments....all I do is make sure she gets them in. I could go on and on, but this, I think, is enough said <img src="i/expressions/face-icon-small-smile.gif" border="0"> Happy to hear you have a wonderful wife and friends...it make a huge difference!!

 

[anonymous]

Your response is pure bull...keep telling yourself you are happy and well adjusted and maybe one day you will believe it. For now I am not buying it. Once again you dismiss healthcare workers...try to remember we had the choice to become an accountant vs. a health care worker and we chose the latter...please just sit in your dark whole alone and stop trying to pull others into it. Go ahead and spew your crap some more if you wish but I am done with you on this site...if your name is on it I am not reading it.

Cheers

Again...get professional help.

 

[CFHockeyMom]

Vote for Luke <img src="i/expressions/face-icon-small-cool.gif" border="0">

 

[blindhearted]

I agree with you Luke. As a happy person with CF, who has one parent (A) who loves me, that "grabs for attention" and wants a "pat on the back" and the other (B) who agrees its hard, but they love me and that's why they do it, and they do twice as much for me. I live with both extremes every day. As a child growing up, I had a happy childhood, but I hated to hear parent A talk about how hard it is on them and the family, and I'm not saying its not. CF is hard on everyone, but its hardest on the person with it. They are the ones who go through the changes of the disease. They fight the fight for life, if they give up then there isn't anything left. No matter what family, parents, healthcare workers or anyone else tries to do to stop it. My fiancee' is also an RN. And from what you say, he seems to be very much the same way as your wife.

So Luke you are not alone for feeling the way you do.

I have to say this to Anon healthcare worker. No disrespect....but as you said, you CHOSE to be a healthcare worker. No one asked you to be. You chose to be a healthcare worker to HELP people. If helping isnt your reason to be a healthcare worker then you should look into another profession.

 

[blindhearted]

[No message]

 

[kybert]

perhaps a section just for parents should be created so they can compete for attention there. 'oh my day was so bad. i had to take x to hospital and la di da. my whole day was taken up, the caffeteria didnt have anything to eat and i am so tired boohoo give me attention'. parents who dont want recognition will never mention how hard they have it. so if parents dont want to come across as a selfish brat, i suggest you keep quiet and accept your kids for who they are whether they appreciate your help or not. 'that' question should NEVER have been brought up in the first place and any normal parent would have never replied trying to explain how hard they have it.

 

[anonymous]

xxx

 

[Seana30]

Luke,

Do you believe that I am the one that made the first post about adult CFers? Is that why you got so upset? If so this is incorrect. The only post that I made was the one that talked about what it was like for me when my daughter was diagnosed.

I do not want to fight with you. You seemed to be pretty calm when you posted this so I wanted respond.

What upset you so much that I discussed what it was like for me went my daughter was diagnosed?? What was it that I say that got you so upset? I never said that I should get recognition for taking care of my daughter. I just thought that I would share what it is like to have a child with CF.....and what the family goes thru and thinks when it happens.

You made me seem like a horrible person, and since you told us a little about you, I would like to share a little about my family with you.

I am 32 years old, married, and have 3 children. I am an EMT and work for a private ambulance company in El Paso, TX. My husband and his family own their own business that deals with land escrow.

We are a family that deals with CF on a daily basis, but we do not allow it to rule our lives. Myself and the kids swim everyday of the summer, we vacation during spring break, and we make sure the kids do their school work during the school year.

In NO way do I ever make Courtney feel that she is a burden to us, and we make sure and tell her on a regular basis that her illness should NOT stop her from doing whatever she wanted to do in life! I take care of Courtney because she is my child and I love her with all of my heart. I feel that Courtney's diagnoses has actually made us a better family because we have learned not to take advantage of each other. I am a good mom, and all of my children receive love, guidance, and discipline whether they have CF or not.

I hope you understand that I am not trying to start a fight with you. I just wish you would have stepped back for a minute and realized that I was doing nothing but sharing my view on the trials and tribulations that I went thru in the first week that Courtney was diagnosed, and how it affected the whole family and still does.

Please, everyone else know that if you respond to this post and have something negative to say to me, don't do it here. I am trying to talk to Luke. If you have something you would like to say to me please rant and rave in the "i didn't mean too" post. Thanks

Seana

 

[anonymous]

you all need to grow up. I have CF and I am thankful for my mom and what she does for me. She gets pretty tired for all she does for me and doesn't complain. We have the right to get on here and talk about our complaints and such why shouldn't they. They call this CysticFibrosis.com a great resource for Cystic Fibrosis discussion and information. That means for everyone parents, siblings, CFers and anyone who wants to know more not just for CFers only. I am happy to get advice from older CFers and from parents who have been through though times it makes me feel like I am not alone and gives me an insight to what my parents are going through.. . Parents don't get on here to get a pat on the back or a hip hip hurray parade for themselves they are just looking for some common ground with other parents just like we do with other CFers.
Or is it like Kylie said about parents We also get on here and Boo hoo about our day and act like CF is the worst disease any kid could have. When I look at what other kids with other illnesses go through I am thankful somethimes that my illness isn't as bad as theirs. Like I said sometimes.. But we talk about how bad our day is and how bad we have it and how bad the food is yada yada arent we expecting the same thing for someone with the same feelings as us to talk with just like they are doing. So If we can get on here and complain then let the parents say what they want to. Some CFers not all act like this world owes them something well it doesn't. We owe the world something before our times up... To make it a better place to live in and a better place for future CFers to voice their thoughts....... Just my thought about this because I do know what it is like to have CF......... Susie

Make this world a better place to live in STOP THE HATERED

 

[luke]

Anonymous healthcare worker, I am interested in what it is you do in healthcare? To be so dedicated and so independently wealthy that you would work for free must be nice. And to respond to the accountant remark, I guess that is why I got my graduate degree in business so I can manage money for a living. For the record, I absolutely couldn't care less if you read my words or not so, cheers straight back at ya.

Seana,

Why you provoked such a strong a response out of me was the post you started was as result to the "do adults ever realize" post. So even though you didn't write those initial words you wrote a version telling your story and why it is just as hard on you as it is on me. I realize it is very hard being a parent of a sick child, as I am sure you realize how hard it is being an adult with a terminal disease. But you must agree it would be a bit insensitive to tell a blind person that you have a difficult time seeing without your glasses, wouldn't you? Well, I consider it rude for a healthy person to tell a person with cystic fibrosis how hard the disease is on them. Hopefully you see where I am coming from, if not you probably won't ever.

Please don't let my words ruin your day like it apparently did yesterday. I post here to exchange ideals not ruin days.


Take care


Luke

 

[anonymous]

I'm with Luke. My husband's mother can't wait to tell people her son has CF and how hard it has been of HER. Never once does she mention the fight he has fought everyday of his life. Like my husband says, he agrees it must have been afwul for his parents, but he hates that they crave attention and get it by telling everyone about his disease ( and the affects on them). People tell me all the time- I don't know how you do it- starting hooking up IV's, feeding tube, O2, the Dr appointment and my response is- I don't know how Micheal does it. Thankfully I am healthy and I can help with his care, he on the other hand has a constant struggle.

 

[JazzysMom]

I have lost track of who said what so please forgive me if I gets things confused. I grew up a very normal child that had to take meds every day for my belly not to hurt when I ate. I never was made to do my aerosols or CPT on a regular basis. I am sure there are a few reasons for this. One being that I was a mild case & seemed to be able to get away with it (not knowing the long term affect), two that if my parents (moreso my Mom) denied it that maybe it would go away & three that if what my parents were told about how long I had was true, then why not let me live the way I wanted to. Yes I had admissions as a child, but again nothing "major" in my eyes. As I have been keeping track of everyones views on this topic I have come to realize things. I have never asked my mother how hard it was on her. Obviously that even without the daily treatments being done that there was a lot for my parents to handle. The financial aspect as well as the worries when I was actually sick. Yes they had to do a lot, but it always seemed like a "fun" time for us. My dad was always working (self employed so didnt get paid when he took off) so my checkups & most admits were with me & my Mom. We use to have a seafood restaurant that we stopped at in NJ on the way home from checkups. It became "tradition" for us to stop there & have a few "Shirley Temples" to drink. We still talk about those times & all the people we have known over the years etc. I personally believe from other things in my Moms life that she "enjoyed' the attention from others of having a sick daughter. She tends to crave & need to be the center of attention. By no means am I saying that she didnt love/care or be truly concerned about me, but I dont think it was all about me. Growing up & still today even tho she has been there to help me, I feel like I was doing it on my own. As a child going into the hospital in NYC which is 2 1/2 hours away, I had to grow up fast. As I grew up & needed my Moms help less & less because I was old enough to do things alone or I had my husband, her need to be needed hasnt been filled. I cant tell her all that the doctor says nor can I confide in her about how I feel physically/emotionally/mentally since she breaks down herself. In addition to the physical aspect of CF (which no one can understand unless having CF), there is the flip side of what parents deal with (again unless you are a CFer who is a parent) you dont understand. Some people have parents that do what they have to with no questions asked, no praises needed or any recognition wanted. Others need some to keep going & there are those that thrive on it. When posting things here it is very hard to get the meaning that is meant at times. I tend to use """ around words & phrases to try & get my point across. Sometimes it works, sometimes it doesnt. I dont believe all the bashing (all around) is appropriate. I do feel that the "Parent" section is a good solution. I just hope that those of us who are not parents of CFers will respect anything posted there no matter what we think of it. To those parents/family/friends who have given, Thank you! To those CFers who also have given, Thank you! I feel everyone has something to offer on this site. Not that it will help everyone, but this topic made me think about something that I can honestly say I took for granted. Now as a Parent I would hope that even tho my daughter doesnt have CF that she appreciates what I do for her because everything is from my heart!

 

[Seana30]

Luke,

First let me say that by no means did you ruin my day yesterday. As I said in a previous post, people say negative things about you only because there is something wrong going on in their own lifes.

Second, I had a blind aunt. She had MANY health issues, and she never had a problem listening to the things that were going on in others lifes whether it be good or bad. She NEVER felt like others should not tell her their problems because "her problems were worse". She was always there for all of us. I think it would have been insensitive of us to make her feel like she was different than everyone else.

Lets take CF out of the picture. Many parents share how difficult it is to raise children. What is wrong with this? I have a daughter that started high school, and a son that started junior high 4 days ago. Although it was the two of them that had to walk into those schools terrified, I am their mom.....I WAS TERRIFIED ALSO. I spent most of the day in the bathroom with a stomach ache. I couldn't wait for them to get home and tell me how their day went. I called a friend for support, we talked, laughed, and she told me everything would be okay, that I have raised my children well and they would be just fine......and they were.

Again, I don't want to fight with you but I have to say that I hope that Courtney does not end up thinking like you do. I have never hidden anything about CF to Courtney so she know exactly what might happen to her as she gets older. She is so open and honest about her illness. I mean she doesn't flaunt it, but most know her situation. I have found that since her diagnoses the kids seem to go to her more with questions about everyday life. She enjoys this. Instead of dwelling on the fact that she is ill she has used it to her advantage. In the past two years she has gone to the district science fair after winning the school science fair with two projects that deal with CF. She is always their to listen to her friends problems, and does not sit there and say "well I have it worse than you". Courtney has a long road ahead of her, and I will always be there for her, and will try to teach her how to keep a positive outlook on life, take care of her health, and live life to the fullest. This is what a parents job is all about.......whether there child has an illness or not.

Last, I don't know you just as you don't know me, but I think you have issues with trying to make people feel guilty. You said "since everyone decided to bash me while I am at work". No one forced you to open these posts while you were at work. It was your choice, and your choice alone to make an issue about my post while in your workplace.


Seana

 

[anonymous]

I applaud Luke for opening up a difficult topic and refusing to white-wash some of the darker elements of this disease.

 

[anonymous]

i cant believe your all still argueing about this. everyone has their own opinion, but were in this together, cant we just move on???

 

[anonymous]

Everyone should be recognized and appreciated for being remarkable. Self involvement is alittle disturbing, whether it's as an adult CFer or a parent. It's not a competition who has it worse. Both sides of this suck and neither is better/bigger/more important then the other. If you don't have CF or you aren't a parent of an ill child you can't definitively say how the other feels nor can you compare. I don't think having a separate forum is necessary either. Pretty soon we can have forums for those on oxygen, listed, w/cepacia, with tummy problems but not lungs, etc. because really how can you understand unless your walking in those shoes. I'm being sarcastic.

Peace out!

 

[anonymous]

I don't applaud Luke. as one cfer to another you are makeing it hared on what we are in this life. When people read what you have to say Luke they feel that all us cfers are like that or have that the world owes us something attitude well they don't so get over it people... Bashing parents for how they feel is the same as them getting on here and bashing us for how we feel... CFers get on here and we say how bad we feel and we have trouble breathing and life in general sucks at times but are we looking for a pat on the back NO just a way to say how we feel about this disease. Let the parents say what they want without the bashing from ill tempered CFers....
I have friends that get on this site to check on me and they have seen what has been going on and now ask if all CFers have a hatered for healthy people. Thanks guys thats all I need on top of what I go through on a daily bases...CF is bad enough without all the extra garbage negative CFers put on.... so think about those in glass houses shouldn't be throwing stones...... just a thought Susie

 

[anonymous]

Suzie did you even read the thread about Do you realize. Honestly I don't know why it is not apparent that that thread was obsurd. The comments made in the original posts is why we are still talking of it today. Do you realize IS a selfish posts. I agree with everything Luke has said and honestly I'm disappointed at everyone who would bash him in a thread meant all for him. Ridiculous. And there we go again putting what what one person says being meant for what al all cf'ers feel. You say your friends ask if all cf'ers are hateful because of what one person says on any thread. You see nothing wrong with that? when your trying to stop someone from responding a certain way but you still do it in your post. Do you get it at all. Just because we have an opinion on a subject doesnt' mean were all bad people. We have opinions because of our enviroment. This site is so judgemental. There's a handful of us on here who take peoples words at what they are meant for then there's the ones that take them and run with them. Everytime someone voices an opinion and it don't match what each other thinks. Some view it as hatred when it's not. It's an opinion. Dont take it out of context. That's when the problems start. Becky