How do you stay disciplined?

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SeanDavis</b></i>

Would you rather be alive with a few dirty dishes and a small pile of laundry or dead and have a clean house?</end quote></div>

As long as you don't pick up something like mold/Aspergillus from those dirty dishes.

 

[Scarlett81]

That's my mantra. Let the dishes/house go if you're tired, sick, on Ivs, but I live with an organized-aholic.
My hubby is impossibly, ridiculouly, Martha Stewart-ly, organized. And its our #1 source of argument. I'm not a slob. I like things neat and germ free and clean. But he is ridiculous. I ties/shirts/ are color coded. He's one of 8 kids, so maybe its a controll issie. Maybe he feels that's all he owns, so by god, he's gonna keep it neat.
Of course when Im sick/on Ivs he doesn't say anything. But on a day to day basis-the house is the most important thing. He doesn't get it yet. I need naps, I need an hour 2x a day for therapy. If that means the dishes are in the sink at the end of the day, SO BE IT.
They won't kill anyone. And yes-delegate. Call a friend, relative, even hire a young neighbor for a little extra cash to clean every week if you have to.

 

[Faust]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Scarlett81</b></i>

That's my mantra. Let the dishes/house go if you're tired, sick, on Ivs, but I live with an organized-aholic.

My hubby is impossibly, ridiculouly, Martha Stewart-ly, organized. And its our #1 source of argument. I'm not a slob. I like things neat and germ free and clean. But he is ridiculous. I ties/shirts/ are color coded. He's one of 8 kids, so maybe its a controll issie. Maybe he feels that's all he owns, so by god, he's gonna keep it neat.

Of course when Im sick/on Ivs he doesn't say anything. But on a day to day basis-the house is the most important thing. He doesn't get it yet. I need naps, I need an hour 2x a day for therapy. If that means the dishes are in the sink at the end of the day, SO BE IT.

They won't kill anyone. And yes-delegate. Call a friend, relative, even hire a young neighbor for a little extra cash to clean every week if you have to.</end quote></div>


Well in my opinion your hubby needs to learn how to deal with it. People with CF are a special case. We get very run down all the time, need many aresols daily, and need clearance treatment, IV's, all kinds of stuff. It's amazing some of us are able to work at all. To me people who have neatfreakitis need to chill out, because most people aren't that way. If it drives them crazy so bad, let THEM take care of the supposed mess. It's their compulsive mental problem, not yours.

To me there is a difference between being kind of a slob, and being a pig. Pig's have half eaten food and dirty possibly disease causing things laying everywhere. Slobs have things like clothes on the floor and clutter around them. I'm somewhat of a slob, but I do have my own breaking point where even I can't stand it anymore. Thankfully my lady is kind of a slob also, or we wouldn't have been able to be together so long. I absolutely can't stand neat freaks, they drive me crazy.

 

[Emily65Roses]

I have pretty much the opposite problem. I am a sufferer of neatfreakitis. <img src="i/expressions/face-icon-small-tongue.gif" border="0">
Mike has agreed to keep the house clean after I'm too sick to clean it anymore, because I have agreed that it doesn't have to be clean to my standards. It's not his fault I'm obsessive. So as long as it's not a pig sty, I'll be happy with his cleaning. Sounds like your husband needs this kind of attitude.

 

[Scarlett81]

I'm definately not a pig. I have slob days, but if I leave a shirt on the floor overnight, it's off the floor in the morning.

My hubby and I had a good stern talk a few days ago, and I said -if you want to stay like this, fine, but when you get in your cleaning saturday morning frenzys, I'm going shopping, or to starbucks, or somewhere. B/c its too stressful. So do what you want, I really dont' care, but for my sanity I'll have to leave the house.
We have a relationship like that. No big deal, but its the stress that gets to me.

And I really dont think that he wants me going to Victorias Secret every time he cleans and spending 100 bucks. So- I think I found the solution.

 

[anonymous]

To Sara and Christian:

Do you do all the house-work alone? If yes, why????? We are living in the 21.century! If a man wants something to eat, he can either cook (and wash the dishes) himself or go to a restaurant! He can also do washing, cleaning, ironing and so on!
If both partners work, they should do the homeworks together and if one can´t work anymore because of health-problems, the other one should do more work!
The other possibility is, if you work much and earn good money: get yourself help from outside! Somebody who cleans the house every week, maybe somebody for ironing (by the way: I prefer microfiber clothes, because you don´t have to iron them) or the garden and go to restaurants more often, don´t cook yourself!

Uli,43,Germany

 

[thelizardqueen]

My guy and I have a great system going. I can't work right now, so I take care of the house when I'm not sick. He's out working 10 hours a day doing hard work (he works for the railroad, so that's a hard blue collar, work with your hands type job), making money for us, and I take care of majority of the cleaning. When I'm sick or having an off day and can't do the housework, he's completly fine with that. Better to have a bit of a dirty house, and have me get better, then have me working my a** off cleaning and getting sicker. To be with someone with CF you have to be selfless. You have to understand that we just DO NOT have the stamina to keep up every single day. We need our rest in order to stay healthy.

 

[Ender]

I just thought I would add to this topic...as I'm here, waiting for dinner <img src="i/expressions/face-icon-small-tongue.gif" border="0">

I never did treatments until about a few months ago when I started feeling crappy, and bought myself a nebulizer. I hated them. I hated the idea of feeling different, of almost kinda lowering myself to cf, I didn't want it controling my life. I was also pretty well off health wise, so it wasn't so detrimental.

I still have a hard time with it. Especially talking to people about it, unless it is on a forum <img src="i/expressions/face-icon-small-tongue.gif" border="0"> I just don't want people looking at me any differently. I see people that are sick, and I feel bad for them...almost kinda pity them, because they never have or had the chance to make something for themselves. I don't want people to look at me like that cause I have had the opportunity to make something of myself, and I'm still working on this whole life thing. I don't deserve pity...

Anyways, that was kinda a rant. I think i decided to start treatments when i started really reading into cf...and understanding it for myself. I got to know the problem, and actually know that if i don't do this, than this will happen etc, instead of a doctor telling me that these treatments were necassary to prevent damage. Cause i didn't feel it, cause i didn't understand it, i didn't do it. But as i got to learn it more, I realized that if i didn't start taking care of myself, and do something for myself, than I would be throwing away the thing that makes us special, that makes us human; to see fate and try to kick it in the *****. It's about choice, about how much you want to live, and turning your back on knowledge, on yourself, and the things we are capable of, well in the end, you're just turning your back on yourself

Kiel

 

[Diane]

One good scare and you WILL start taking better care of your self and doing treatments. I had very mild cf all my life till i got b. cepacia at the age of 32. Even that didnt scare me enough because it didnt do too much more to me than make me sick and in need of an iv , here and there and after the iv treatment was over i was back to feeling "normal". I could not be convinced to start doing any treatments, because i still felt i didnt need them yet. Since i hadnt done any type of treatments before, i figured i'd save the use of them till i REALLY needed them. Well that time came right after my second embolization and my fev1 had dropped quite a bit and i felt crappy from then on. After the embolizations i was literally afraid to move thinking it would cause more bleeding and i refused to exercise, or do anything but sit on the couch and watch tv thinking that was safest and wouldnt make my lungs bleed. Thats when i lost some numbers in my fev1 and found i wasnt able to get them back up to where they were before the bleeding fiascos. Then one day i was reading a book called "Psycosocial Aspects Of Cystic Fibrosis, and it finally hit me how serious cf really is. Since i had mild cf i didnt think anything bad from cf would happen to me, or that it would "catch up" to me so soon. I started to realize i had to so SOMETHING NOW if i want to preserve the good health i still have. I started using the vest once a day, twice if i feel crappy, and i also use the flutter whenever i feel i need it. My fev has come up a bit but i am determined to get it back to where i feel comfortable again. I also started walking on the treadmill which has helped a lot in the way i feel and helps me with having more energy and i am trying to build more stamina. Don't wait till something bad happens to you, because if you invite it, it may come. Do something, anything it takes to get motivated to stay well, Dont wait till your life depends on it.

 

[LisaV]

The only way I could do any personal care once I was married and working (let alone kids) was to set the alarm and get up before everyone else and do stuff then alone.

Would first thing in the morning work for you?

 

[JennifersHope]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

To Sara and Christian:



Do you do all the house-work alone? If yes, why????? We are living in the 21.century! If a man wants something to eat, he can either cook (and wash the dishes) himself or go to a restaurant! He can also do washing, cleaning, ironing and so on!

If both partners work, they should do the homeworks together and if one can´t work anymore because of health-problems, the other one should do more work!

The other possibility is, if you work much and earn good money: get yourself help from outside! Somebody who cleans the house every week, maybe somebody for ironing (by the way: I prefer microfiber clothes, because you don´t have to iron them) or the garden and go to restaurants more often, don´t cook yourself!



Uli,43,Germany</end quote></div>


ULI YOU ARE AWESOME.... WHAT A GREAT ATTITUDE YOU HAVE....

JENNIFER

 

[Brad]

Sean

When You went on disability , How did You go about it, Did
You need a lawyer?
I am in pretty good shape as far as cf goes, but I do have some
pretty bad times , have been way way bad a few times ( near death)

I tried not long after I had my lung out for disability. I received
the rejection leter less than 24 hours after I was the SS office.

I have been out of work in the past, no Ins.coverage , all my meds came
out of pocket , I could not get any help......
How is it done ?????????

 

[Faust]

Get a lawyer. Nearly all of them won't charge anything untill you get a payout. Here is the problem with CF and working: You grow up and you have it relatively mild, so you start working. Maybe you have gone to school and got a degree or just a trade or whatever. You work for 10+ (or whatever) years, with your health continually degrading over time, and more than likely accelerating in it's decline due to stress and missing treatments and all that due to working. In the eyes of Uncle Sam, we have proven that we are able to work. When our lungs and body get pretty bad, and we realize we inevitably need to stop working, we apply for disability. This is when it seems to be an insurmountable task. They will immediately decline your request, then you just gotta keep on tryin, the whole time you have no income or insurance. Only hope is to get a lawyer and hope your PFT's and such are bad enough and your doctor is on your side.

 

[coltsfan715]

<div class="FTQUOTE"><begin quote>I tried not long after I had my lung out for disability. I received the rejection leter less than 24 hours after I was the SS office. </end quote></div>

This is the 2nd or 3rd time I have seen a comment similar to this on this site. I am just wondering where you all are applying for disability lol. I applied when I was 19 and it took about 6 months before I got a letter of denial. Then I appealed (appeal the decision if you are denied by the way DO NOT file again -- simply appeal) and the appeal took another few months all in all it was about 10 months from my first filing til the appeal went through and I was approved. I didn't need a lawyer cause the letter denying me the first time explained the process of how to appeal. Also a social worker where you go to clinic may be able to help you - that is who helped me fill out my paperwork and gave me advice and they didn't charge a thing.

Just read that again and was intrigued and just had to ask what was up with the received an answer within hours. I guess to see if you were serious. The other post I read the person stated numerous times that yes they received their answer in a matter of hours and yes they were serious.

Lindsey

 

[Scarlett81]

To Uli-

Thanks for the above statement- but you obviously don't have an Italian husband.<img src="i/expressions/face-icon-small-happy.gif" border="0">
(just kidding) I am very old fashioned, and so is my husband and his family. I really dont mind it that way. He provides everything for me, he works his a** off, so I dont have to worry about work and bills. So I really don't mind being the main one in charge of the house. And I kinda like knowing that this is my domain, and furthermore I can chose how to run the house, what furniture to buy, ect..
Cooking is no big deal for me, I love it. I would be a pro chef if I could.
My husband can make Raman noodles and cereal for himself, that's about it.

I think our main problem is the 'organization' mania he has. Its so annoying to have him start going through every magazine and piece of paper, and if it's not his, it get's "accidently" thrown out. It really is a form of addiciton to him!

BUt sometimes, if you can't beat him, join him. I'd rather get up and do it myself, than have him try to cook it, clean it, or wash it-and just ruin it. That's probably my problem. I gotta let it go!

 

[JazzysMom]

Actually Christian....your husband sounds a lot like me. My house is not spotless, but because I hate clutter of any kind, my home gives off the ollusion of clean. There is a place for everything & everything is in its place. I am obessive about it. I use to be a lot worsen like having my closets/cabinets perfect. I cant physically keep up with that type of demand anymore, but have receuited my daughter/hubby in helping with the general maintainance of the house. Since I also stay at home I try to do most of the stuff myself. I feel bad that my hubby works all day etc where even tho I do things, its at my pace & if I dont get something done today, I can do it tomorrow. If I am sick its different, but as I have learned in the past & as Dr. Walker has been quick to remind me that just because I can do a lot....doesnt mean I should. I tend to push too much when I am feeling ok & then it backfires!

 

[catboogie]

Diane, if you don't mind me asking, do you have b. cepacia
genomovar III?

 

[Diane]

yes.... I was under the impression i did not have that strain since i have had cepacia for a long time with not much decline over the years ( till the massive hemoptysis episodes). I then asked my doctors and we got it typed with the next sputum culture and it came back as III.

 

[JustDucky]

About keeping up with the treatments and such...most of you were diagnosed fairly early, so I didn't have the treatments as a child, but now that I am diagnosed (at 32), the regime was quite overwhelming at first...just juggling the vest, the nebs, cleaning the nebs, taking the meds....it takes up a chunk of time I realized. Now I have it down to a science, and I combine tasks so that it doesn't take as long. I no longer work, I live on a vent (not CF related), so I give lots of credit to those who still work and maintain their houses. My mom does most of that...one thing I can't stand is dust. I will actually come off of my vent, bag myself and dust with my disinfectent rag LOL! I know, silly but true. When I am on IV's, it really throws off my schedule...which I am on every other month for the B. cepacia...I get sick so often with that critter.
I guess my advice, even though I am fairly new at this, is to just try and look at the benefits of doing these treatments, even though they may be very time consuming at times. See, I could never qualify for new lungs because I have muscle disease, and progressive at that so I have to take care of what I have, so I am extra vigilant of my treatments. Try to combine what you can to save time, even if you are tired, just do at least something.
I hope I have helped...Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I think the NY Times article about the Minneapolis CF Clinic, talked about someone who put the vest on at night while they slept. And a person on another site mentioned how her husband strapped the kids in their vests at 5:30 a.m. while they slept to get in their CPT, but not interupt their sleep.

DS starts up his tobi tomorrow and the morning one isn't so bad 'cuz after CPT, he hangs out in bed and dozes, sometimes has his breakfast.

I know some people don't believe you get as good of a treatment if you're sleeping, but IMO, it's better than no treatment at all.

Liza