Moving out of 'home'

b12bc · Jul 11, 2010

Hey everyone.. I've lurked on here for a long time but haven't posted much.

I recently moved out of my parents' house and I'm having a really hard time motivating myself to keep up with my meds and treatments. I know I need to, but without the structure I had at home it's HARD to do it all. I get home late and sleep in late on some weekends, and I'm always running around between work and taking summer courses. I've luckily been pretty healthy, but when I skip treatments I can tell it affects me.

How have others of you dealt with this and kept yourselves healthy when you don't have the encouragement of your parents and the structure you're used to?

Thanks everyone.

b12bc · Jul 11, 2010

Hey everyone.. I've lurked on here for a long time but haven't posted much.

I recently moved out of my parents' house and I'm having a really hard time motivating myself to keep up with my meds and treatments. I know I need to, but without the structure I had at home it's HARD to do it all. I get home late and sleep in late on some weekends, and I'm always running around between work and taking summer courses. I've luckily been pretty healthy, but when I skip treatments I can tell it affects me.

How have others of you dealt with this and kept yourselves healthy when you don't have the encouragement of your parents and the structure you're used to?

Thanks everyone.

b12bc · Jul 11, 2010

Hey everyone.. I've lurked on here for a long time but haven't posted much.
 
 I recently moved out of my parents' house and I'm having a really hard time motivating myself to keep up with my meds and treatments. I know I need to, but without the structure I had at home it's HARD to do it all. I get home late and sleep in late on some weekends, and I'm always running around between work and taking summer courses. I've luckily been pretty healthy, but when I skip treatments I can tell it affects me.
 
 How have others of you dealt with this and kept yourselves healthy when you don't have the encouragement of your parents and the structure you're used to?
 
 Thanks everyone.

theLostMiler · Jul 12, 2010

First may I ask your age?

Anyways. I basically doomed myself b/c my first semester in the dorms I bet I did 3 treatments the whole time (I guess I could ignore not breathing well). The second semseter I was more focused on school so I did probably 5 days a week one solid treatment. I had a bad relationship w/ my ped cf doctor though so I didnt see her for a year which didnt help b/c i should have been on ivs and inhaled abx and everything... I sucked at compliance let me tell you. I think I got my m. abscessus in the dorm showers so I think if I wouldnt have lived there I would be in a better situation ha. With treatments and regular doctor visits it should have been curtailed... sigh, hindsight is 20/20.

okay after that summer and the return to school and my apartment, I guess it just hit me, that I needed to do everything. I guess it took not feeling well and missing out on a whole summer basically b/c I was on ivs. I couldnt keep up on food, school and/or job, treatments and everything though, and my weight severly suffered (from no meals already cooked!). Even though I had a weird schedule, I set up a routine when I got up, always a treatment and then if I had free time in between finishing classes for the day and homework party w/ friends I would try to get my evening one done then so if I stayed up late I wouldnt be fighting the urge to skip a treatment. I did homework while vesting, even written stuff (always imagine what the graders though ha). Otherwise, I normally forced myself to stay up and do a treatment... the guilt of missing one, finally took ahold of me haha.

And lastly, take a day or however long, and make your home structured, I helped when everything had a place at my place as well as home. I never knew to sterilize nebulizers until I got the eFlow in like 2006 so I never cleaned anything back when I lived at home (again, I didnt do treatments until the later years of high school not b/c of non compliance but when I was born my uncle RT told my mom if I wasnt sick to not do treatments b/c stuff was hard on the heart, so I didnt and I grew up w/ a regular pediatric doctor... hence my freshman year of college was even worse b/c doing treatments wasnt as 'ingrained' in me)...

anyways. Do you have the availability to ask for help? Either in having a parent come stay and help you catch up (My mom has a stay at home job she can bring when she stays w/ me for instance)? Or having your parents make you food to freeze and/or going to one of those cooking things/schools where you can cook meals for like a month? Can you buy extra nebulizer cups to reduce the need to sterilize (its a big hinderance for me, I hate cleaning those lol)? Do you have a bottle sterilizer to help w/ the time in that way too? Can you set aside a chair and tv stand or anything where you can consider it your "treatment space"? My bed is one for me b/c i have a tv in there and a breakfast tray for my computer <img src="i/expressions/face-icon-small-smile.gif" border="0"> Can you get the TRIO to help speed up treatment times (I got the eflow when it was relatively new b/c my ped dr. petitioned for me b/c i was in college, but you have to clean it correctly, mine always clogged so I gave it up back then)

I hate to say this, but FOR ME at least, I had to slow down... I cant take summer classes, I just cant physically, I need that time to recoup, and build motivation to get through the next year of school. The more tired and sick I start to feel, the less guilt I have about missing treatments, so you can see how that snowballs right?

Otherwise, I have noticed (I feel at least) it takes a "scare" to get people moving (not always) for a lot of people anyways..

So, that was all over the place, but hopefully I offered something that sparked an idea or something in you. Hopefully some others help out too (or more).

PS: I thought, if you like exercise more, at least make sure to do something that will get you coughing even if you can make a treatment... thats some form of airway clearance anyways.

Tabitha <img src="i/expressions/face-icon-small-smile.gif" border="0">

theLostMiler · Jul 12, 2010

First may I ask your age?

Anyways. I basically doomed myself b/c my first semester in the dorms I bet I did 3 treatments the whole time (I guess I could ignore not breathing well). The second semseter I was more focused on school so I did probably 5 days a week one solid treatment. I had a bad relationship w/ my ped cf doctor though so I didnt see her for a year which didnt help b/c i should have been on ivs and inhaled abx and everything... I sucked at compliance let me tell you. I think I got my m. abscessus in the dorm showers so I think if I wouldnt have lived there I would be in a better situation ha. With treatments and regular doctor visits it should have been curtailed... sigh, hindsight is 20/20.

okay after that summer and the return to school and my apartment, I guess it just hit me, that I needed to do everything. I guess it took not feeling well and missing out on a whole summer basically b/c I was on ivs. I couldnt keep up on food, school and/or job, treatments and everything though, and my weight severly suffered (from no meals already cooked!). Even though I had a weird schedule, I set up a routine when I got up, always a treatment and then if I had free time in between finishing classes for the day and homework party w/ friends I would try to get my evening one done then so if I stayed up late I wouldnt be fighting the urge to skip a treatment. I did homework while vesting, even written stuff (always imagine what the graders though ha). Otherwise, I normally forced myself to stay up and do a treatment... the guilt of missing one, finally took ahold of me haha.

And lastly, take a day or however long, and make your home structured, I helped when everything had a place at my place as well as home. I never knew to sterilize nebulizers until I got the eFlow in like 2006 so I never cleaned anything back when I lived at home (again, I didnt do treatments until the later years of high school not b/c of non compliance but when I was born my uncle RT told my mom if I wasnt sick to not do treatments b/c stuff was hard on the heart, so I didnt and I grew up w/ a regular pediatric doctor... hence my freshman year of college was even worse b/c doing treatments wasnt as 'ingrained' in me)...

anyways. Do you have the availability to ask for help? Either in having a parent come stay and help you catch up (My mom has a stay at home job she can bring when she stays w/ me for instance)? Or having your parents make you food to freeze and/or going to one of those cooking things/schools where you can cook meals for like a month? Can you buy extra nebulizer cups to reduce the need to sterilize (its a big hinderance for me, I hate cleaning those lol)? Do you have a bottle sterilizer to help w/ the time in that way too? Can you set aside a chair and tv stand or anything where you can consider it your "treatment space"? My bed is one for me b/c i have a tv in there and a breakfast tray for my computer <img src="i/expressions/face-icon-small-smile.gif" border="0"> Can you get the TRIO to help speed up treatment times (I got the eflow when it was relatively new b/c my ped dr. petitioned for me b/c i was in college, but you have to clean it correctly, mine always clogged so I gave it up back then)

I hate to say this, but FOR ME at least, I had to slow down... I cant take summer classes, I just cant physically, I need that time to recoup, and build motivation to get through the next year of school. The more tired and sick I start to feel, the less guilt I have about missing treatments, so you can see how that snowballs right?

Otherwise, I have noticed (I feel at least) it takes a "scare" to get people moving (not always) for a lot of people anyways..

So, that was all over the place, but hopefully I offered something that sparked an idea or something in you. Hopefully some others help out too (or more).

PS: I thought, if you like exercise more, at least make sure to do something that will get you coughing even if you can make a treatment... thats some form of airway clearance anyways.

Tabitha <img src="i/expressions/face-icon-small-smile.gif" border="0">

theLostMiler · Jul 12, 2010

First may I ask your age?
 
 Anyways. I basically doomed myself b/c my first semester in the dorms I bet I did 3 treatments the whole time (I guess I could ignore not breathing well). The second semseter I was more focused on school so I did probably 5 days a week one solid treatment. I had a bad relationship w/ my ped cf doctor though so I didnt see her for a year which didnt help b/c i should have been on ivs and inhaled abx and everything... I sucked at compliance let me tell you. I think I got my m. abscessus in the dorm showers so I think if I wouldnt have lived there I would be in a better situation ha. With treatments and regular doctor visits it should have been curtailed... sigh, hindsight is 20/20.
 
 okay after that summer and the return to school and my apartment, I guess it just hit me, that I needed to do everything. I guess it took not feeling well and missing out on a whole summer basically b/c I was on ivs. I couldnt keep up on food, school and/or job, treatments and everything though, and my weight severly suffered (from no meals already cooked!). Even though I had a weird schedule, I set up a routine when I got up, always a treatment and then if I had free time in between finishing classes for the day and homework party w/ friends I would try to get my evening one done then so if I stayed up late I wouldnt be fighting the urge to skip a treatment. I did homework while vesting, even written stuff (always imagine what the graders though ha). Otherwise, I normally forced myself to stay up and do a treatment... the guilt of missing one, finally took ahold of me haha.
 
 And lastly, take a day or however long, and make your home structured, I helped when everything had a place at my place as well as home. I never knew to sterilize nebulizers until I got the eFlow in like 2006 so I never cleaned anything back when I lived at home (again, I didnt do treatments until the later years of high school not b/c of non compliance but when I was born my uncle RT told my mom if I wasnt sick to not do treatments b/c stuff was hard on the heart, so I didnt and I grew up w/ a regular pediatric doctor... hence my freshman year of college was even worse b/c doing treatments wasnt as 'ingrained' in me)...
 
 anyways. Do you have the availability to ask for help? Either in having a parent come stay and help you catch up (My mom has a stay at home job she can bring when she stays w/ me for instance)? Or having your parents make you food to freeze and/or going to one of those cooking things/schools where you can cook meals for like a month? Can you buy extra nebulizer cups to reduce the need to sterilize (its a big hinderance for me, I hate cleaning those lol)? Do you have a bottle sterilizer to help w/ the time in that way too? Can you set aside a chair and tv stand or anything where you can consider it your "treatment space"? My bed is one for me b/c i have a tv in there and a breakfast tray for my computer <img src="i/expressions/face-icon-small-smile.gif" border="0"> Can you get the TRIO to help speed up treatment times (I got the eflow when it was relatively new b/c my ped dr. petitioned for me b/c i was in college, but you have to clean it correctly, mine always clogged so I gave it up back then)
 
 
 I hate to say this, but FOR ME at least, I had to slow down... I cant take summer classes, I just cant physically, I need that time to recoup, and build motivation to get through the next year of school. The more tired and sick I start to feel, the less guilt I have about missing treatments, so you can see how that snowballs right?
 
 Otherwise, I have noticed (I feel at least) it takes a "scare" to get people moving (not always) for a lot of people anyways..
 
 So, that was all over the place, but hopefully I offered something that sparked an idea or something in you. Hopefully some others help out too (or more).
 
 PS: I thought, if you like exercise more, at least make sure to do something that will get you coughing even if you can make a treatment... thats some form of airway clearance anyways.
 
 Tabitha <img src="i/expressions/face-icon-small-smile.gif" border="0">

b12bc · Jul 12, 2010

Thank you so much for the reply, you are wonderful.

I just turned 20 and I moved out in January. I unfortunately do not have the best relationship with my parents (admittedly somewhat due to my moving out) and I live several hours away from them. Luckily I now live much closer to my CF clinic. I am living in apartment with a WONDERFUL, very supportive roommate, but she does not have experience with CF and understandably can't really understand the severity of it and the necessity of my treatment "ritual". She is encouraging and supportive, but not a parent.

I suppose it eventually will hit me... I missed most of my first semester of college due to being in/out of the hospital and sick a lot of the time (this is while I was still living at home). That's why I'm taking summer classes before beginning at a university (hopefully) this fall. I am just going to have to whip myself into shape and create some organization where I'm not typically organized... I've been responsible for my meds and treatments for years now, but other things (like COOKING!), while not entirely foreign, are something I'm usually too busy/lazy/exhausted to do diligently. I've been trying to make big meals that can be stored, but it takes so much time and effort and to be perfectly honest, I just don't feel like it most of the time.. It's either that OR doing treatments, but rarely both. I don't mind cleaning the nebs and preparing everything so much, I do that out of habit, but that in ADDITION to everything else doesn't always happen.

Another thing - After spending much of last fall on IVs and my healthy declining that (I foresee that happening again sooner rather than later) there has been talk of a port the next time that comes up. Experience or thoughts?

I do exercise often. When I'm healthy I run or bike. I used to swim but my body doesn't like the chemicals.

b12bc · Jul 12, 2010

Thank you so much for the reply, you are wonderful.

I just turned 20 and I moved out in January. I unfortunately do not have the best relationship with my parents (admittedly somewhat due to my moving out) and I live several hours away from them. Luckily I now live much closer to my CF clinic. I am living in apartment with a WONDERFUL, very supportive roommate, but she does not have experience with CF and understandably can't really understand the severity of it and the necessity of my treatment "ritual". She is encouraging and supportive, but not a parent.

I suppose it eventually will hit me... I missed most of my first semester of college due to being in/out of the hospital and sick a lot of the time (this is while I was still living at home). That's why I'm taking summer classes before beginning at a university (hopefully) this fall. I am just going to have to whip myself into shape and create some organization where I'm not typically organized... I've been responsible for my meds and treatments for years now, but other things (like COOKING!), while not entirely foreign, are something I'm usually too busy/lazy/exhausted to do diligently. I've been trying to make big meals that can be stored, but it takes so much time and effort and to be perfectly honest, I just don't feel like it most of the time.. It's either that OR doing treatments, but rarely both. I don't mind cleaning the nebs and preparing everything so much, I do that out of habit, but that in ADDITION to everything else doesn't always happen.

Another thing - After spending much of last fall on IVs and my healthy declining that (I foresee that happening again sooner rather than later) there has been talk of a port the next time that comes up. Experience or thoughts?

I do exercise often. When I'm healthy I run or bike. I used to swim but my body doesn't like the chemicals.

b12bc · Jul 12, 2010

Thank you so much for the reply, you are wonderful.
 
 I just turned 20 and I moved out in January. I unfortunately do not have the best relationship with my parents (admittedly somewhat due to my moving out) and I live several hours away from them. Luckily I now live much closer to my CF clinic. I am living in apartment with a WONDERFUL, very supportive roommate, but she does not have experience with CF and understandably can't really understand the severity of it and the necessity of my treatment "ritual". She is encouraging and supportive, but not a parent.
 
 I suppose it eventually will hit me... I missed most of my first semester of college due to being in/out of the hospital and sick a lot of the time (this is while I was still living at home). That's why I'm taking summer classes before beginning at a university (hopefully) this fall. I am just going to have to whip myself into shape and create some organization where I'm not typically organized... I've been responsible for my meds and treatments for years now, but other things (like COOKING!), while not entirely foreign, are something I'm usually too busy/lazy/exhausted to do diligently. I've been trying to make big meals that can be stored, but it takes so much time and effort and to be perfectly honest, I just don't feel like it most of the time.. It's either that OR doing treatments, but rarely both. I don't mind cleaning the nebs and preparing everything so much, I do that out of habit, but that in ADDITION to everything else doesn't always happen.
 
 Another thing - After spending much of last fall on IVs and my healthy declining that (I foresee that happening again sooner rather than later) there has been talk of a port the next time that comes up. Experience or thoughts?
 
 I do exercise often. When I'm healthy I run or bike. I used to swim but my body doesn't like the chemicals.

b12bc · Jul 12, 2010

Thank you so much for the reply, you are wonderful.

I just turned 20 and I moved out in January. I unfortunately do not have the best relationship with my parents (admittedly somewhat due to my moving out) and I live several hours away from them. Luckily I now live much closer to my CF clinic. I am living in apartment with a WONDERFUL, very supportive roommate, but she does not have experience with CF and understandably can't really understand the severity of it and the necessity of my treatment "ritual". She is encouraging and supportive, but not a parent.

I suppose it eventually will hit me... I missed most of my first semester of college due to being in/out of the hospital and sick a lot of the time (this is while I was still living at home). That's why I'm taking summer classes before beginning at a university (hopefully) this fall. I am just going to have to whip myself into shape and create some organization where I'm not typically organized... I've been responsible for my meds and treatments for years now, but other things (like COOKING!), while not entirely foreign, are something I'm usually too busy/lazy/exhausted to do diligently. I've been trying to make big meals that can be stored, but it takes so much time and effort and to be perfectly honest, I just don't feel like it most of the time.. It's either that OR doing treatments, but rarely both. I don't mind cleaning the nebs and preparing everything so much, I do that out of habit, but that in ADDITION to everything else doesn't always happen.

Another thing - After spending much of last fall on IVs and my healthy declining that (I foresee that happening again sooner rather than later) there has been talk of a port the next time that comes up. Experience or thoughts?

I do exercise often. When I'm healthy I run or bike. I used to swim but my body doesn't like the chemicals.

b12bc · Jul 12, 2010

Thank you so much for the reply, you are wonderful.

I just turned 20 and I moved out in January. I unfortunately do not have the best relationship with my parents (admittedly somewhat due to my moving out) and I live several hours away from them. Luckily I now live much closer to my CF clinic. I am living in apartment with a WONDERFUL, very supportive roommate, but she does not have experience with CF and understandably can't really understand the severity of it and the necessity of my treatment "ritual". She is encouraging and supportive, but not a parent.

I suppose it eventually will hit me... I missed most of my first semester of college due to being in/out of the hospital and sick a lot of the time (this is while I was still living at home). That's why I'm taking summer classes before beginning at a university (hopefully) this fall. I am just going to have to whip myself into shape and create some organization where I'm not typically organized... I've been responsible for my meds and treatments for years now, but other things (like COOKING!), while not entirely foreign, are something I'm usually too busy/lazy/exhausted to do diligently. I've been trying to make big meals that can be stored, but it takes so much time and effort and to be perfectly honest, I just don't feel like it most of the time.. It's either that OR doing treatments, but rarely both. I don't mind cleaning the nebs and preparing everything so much, I do that out of habit, but that in ADDITION to everything else doesn't always happen.

Another thing - After spending much of last fall on IVs and my healthy declining that (I foresee that happening again sooner rather than later) there has been talk of a port the next time that comes up. Experience or thoughts?

I do exercise often. When I'm healthy I run or bike. I used to swim but my body doesn't like the chemicals.

b12bc · Jul 12, 2010

Thank you so much for the reply, you are wonderful.
 
 I just turned 20 and I moved out in January. I unfortunately do not have the best relationship with my parents (admittedly somewhat due to my moving out) and I live several hours away from them. Luckily I now live much closer to my CF clinic. I am living in apartment with a WONDERFUL, very supportive roommate, but she does not have experience with CF and understandably can't really understand the severity of it and the necessity of my treatment "ritual". She is encouraging and supportive, but not a parent.
 
 I suppose it eventually will hit me... I missed most of my first semester of college due to being in/out of the hospital and sick a lot of the time (this is while I was still living at home). That's why I'm taking summer classes before beginning at a university (hopefully) this fall. I am just going to have to whip myself into shape and create some organization where I'm not typically organized... I've been responsible for my meds and treatments for years now, but other things (like COOKING!), while not entirely foreign, are something I'm usually too busy/lazy/exhausted to do diligently. I've been trying to make big meals that can be stored, but it takes so much time and effort and to be perfectly honest, I just don't feel like it most of the time.. It's either that OR doing treatments, but rarely both. I don't mind cleaning the nebs and preparing everything so much, I do that out of habit, but that in ADDITION to everything else doesn't always happen.
 
 Another thing - After spending much of last fall on IVs and my healthy declining that (I foresee that happening again sooner rather than later) there has been talk of a port the next time that comes up. Experience or thoughts?
 
 I do exercise often. When I'm healthy I run or bike. I used to swim but my body doesn't like the chemicals.

theLostMiler · Jul 12, 2010

Oh man I am so sorry to hear about your relationship with the rents not being ideal... that definitely makes it all harder.

The cooking thing is exactly where I mess up, like I said, I got the hang of the routine of nebs and vest, but I diminished my appetite by often ignoring it b/c I was too lazy/tired/busy to find or cook food. I still struggle with the will and energy to cook... like I said, I have heard of these places where you can go and cook meals for like a month, they are normally for moms who work kinda thing, but I was on the verge of doing it. Also, I read that another CF'er gets her groceries delivered, and that is what I plan on looking into once I start school back up (I have been going back and forth between my college town and home town) b/c often, I will cook now, but loathe the grocery store, so I figure if I can order what I want and have it delivered... there is half the battle (I hope).

Also, if your roomate is supportive, does she cook? I was also fortunate that my roomate I lived w/ for 3 years grew up with me so she was well aware of my CF (granted, the 'milder' symptoms growing up somewhat blinded her to the severity of cf, as well as me) but she loved to cook, she especially loves sweets like muffins, brownies, cookies, cupcakes etc and regular dinner type things too. For a long time when one of us would cook we would share and/or trade off... it wasnt dinner everynight though, but it was better than nothing. Maybe you could collaborate and buy some groceries together or you buy one week, she the next and so you could have 2-3 solid meals a week, which could hopefully grow. And do you have any calorie shakes either? I used to do those in the morn for breakfast b/c I never got to that w/ treatments and all.

It just sucks b/c us CF'ers cant live like 'normal' college kids where they can go w/o calories (all my friends skip meals all the time which makes it harder to make sure I eat enough) and then eat a bag of doritos type thing.

Lastly as for the port, I got mine only after about 2 years of intense ivs, but considering my bugs the iv treatment didnt look like it would less, so we went ahead w/ it even though I still have fine veins. I only got it in September, but so far I love it. I am not too concerned about how it looks fortunately. I have a power port, like a power picc it can do contrast dye for CFs, and to me its bigger than other ports, but I am pretty skinny most the time. I got it on my right chest, above the boob. Some girls get it in the booby fatty tissue so its more hidden, but i have heard it can be harder to access b/c it can move around on the nurse more. The scar I have is taking a long time to fade, but like I said, Im not too concerned. Most shirts cover it. Umm, the worst thing I forsee is getting it flushed every 4-6 weeks, but again I am blessed to have an awesome home health nurse who I can call directly and so we just kinda squeeze me in when its been a month, hopefully something like that will work for you to. The best though is say you call your docs and you feel like you want some ivs, 2 weeks whatever, all they have to do is fax the orders over to home health to get started, no appts. to IR for piccs etc. Plus, you can eventually learn to access your own port (I havent got there yet). I imagine some activies might be bad, like karate (its been talked about on the boards)... but my port doesnt uusually hurt too bad even w/ a direct punch (unless its accessed obviously), but as far as I know, exercise and stuff can still be done the same.

Again, sorry if I was all over the place, I tend to (talk) type a lot <img src="i/expressions/face-icon-small-smile.gif" border="0">

Tabitha

theLostMiler · Jul 12, 2010

Oh man I am so sorry to hear about your relationship with the rents not being ideal... that definitely makes it all harder.

The cooking thing is exactly where I mess up, like I said, I got the hang of the routine of nebs and vest, but I diminished my appetite by often ignoring it b/c I was too lazy/tired/busy to find or cook food. I still struggle with the will and energy to cook... like I said, I have heard of these places where you can go and cook meals for like a month, they are normally for moms who work kinda thing, but I was on the verge of doing it. Also, I read that another CF'er gets her groceries delivered, and that is what I plan on looking into once I start school back up (I have been going back and forth between my college town and home town) b/c often, I will cook now, but loathe the grocery store, so I figure if I can order what I want and have it delivered... there is half the battle (I hope).

Also, if your roomate is supportive, does she cook? I was also fortunate that my roomate I lived w/ for 3 years grew up with me so she was well aware of my CF (granted, the 'milder' symptoms growing up somewhat blinded her to the severity of cf, as well as me) but she loved to cook, she especially loves sweets like muffins, brownies, cookies, cupcakes etc and regular dinner type things too. For a long time when one of us would cook we would share and/or trade off... it wasnt dinner everynight though, but it was better than nothing. Maybe you could collaborate and buy some groceries together or you buy one week, she the next and so you could have 2-3 solid meals a week, which could hopefully grow. And do you have any calorie shakes either? I used to do those in the morn for breakfast b/c I never got to that w/ treatments and all.

It just sucks b/c us CF'ers cant live like 'normal' college kids where they can go w/o calories (all my friends skip meals all the time which makes it harder to make sure I eat enough) and then eat a bag of doritos type thing.

Lastly as for the port, I got mine only after about 2 years of intense ivs, but considering my bugs the iv treatment didnt look like it would less, so we went ahead w/ it even though I still have fine veins. I only got it in September, but so far I love it. I am not too concerned about how it looks fortunately. I have a power port, like a power picc it can do contrast dye for CFs, and to me its bigger than other ports, but I am pretty skinny most the time. I got it on my right chest, above the boob. Some girls get it in the booby fatty tissue so its more hidden, but i have heard it can be harder to access b/c it can move around on the nurse more. The scar I have is taking a long time to fade, but like I said, Im not too concerned. Most shirts cover it. Umm, the worst thing I forsee is getting it flushed every 4-6 weeks, but again I am blessed to have an awesome home health nurse who I can call directly and so we just kinda squeeze me in when its been a month, hopefully something like that will work for you to. The best though is say you call your docs and you feel like you want some ivs, 2 weeks whatever, all they have to do is fax the orders over to home health to get started, no appts. to IR for piccs etc. Plus, you can eventually learn to access your own port (I havent got there yet). I imagine some activies might be bad, like karate (its been talked about on the boards)... but my port doesnt uusually hurt too bad even w/ a direct punch (unless its accessed obviously), but as far as I know, exercise and stuff can still be done the same.

Again, sorry if I was all over the place, I tend to (talk) type a lot <img src="i/expressions/face-icon-small-smile.gif" border="0">

Tabitha

theLostMiler · Jul 12, 2010

Oh man I am so sorry to hear about your relationship with the rents not being ideal... that definitely makes it all harder.
 
 The cooking thing is exactly where I mess up, like I said, I got the hang of the routine of nebs and vest, but I diminished my appetite by often ignoring it b/c I was too lazy/tired/busy to find or cook food. I still struggle with the will and energy to cook... like I said, I have heard of these places where you can go and cook meals for like a month, they are normally for moms who work kinda thing, but I was on the verge of doing it. Also, I read that another CF'er gets her groceries delivered, and that is what I plan on looking into once I start school back up (I have been going back and forth between my college town and home town) b/c often, I will cook now, but loathe the grocery store, so I figure if I can order what I want and have it delivered... there is half the battle (I hope).
 
 Also, if your roomate is supportive, does she cook? I was also fortunate that my roomate I lived w/ for 3 years grew up with me so she was well aware of my CF (granted, the 'milder' symptoms growing up somewhat blinded her to the severity of cf, as well as me) but she loved to cook, she especially loves sweets like muffins, brownies, cookies, cupcakes etc and regular dinner type things too. For a long time when one of us would cook we would share and/or trade off... it wasnt dinner everynight though, but it was better than nothing. Maybe you could collaborate and buy some groceries together or you buy one week, she the next and so you could have 2-3 solid meals a week, which could hopefully grow. And do you have any calorie shakes either? I used to do those in the morn for breakfast b/c I never got to that w/ treatments and all.
 
 It just sucks b/c us CF'ers cant live like 'normal' college kids where they can go w/o calories (all my friends skip meals all the time which makes it harder to make sure I eat enough) and then eat a bag of doritos type thing.
 
 Lastly as for the port, I got mine only after about 2 years of intense ivs, but considering my bugs the iv treatment didnt look like it would less, so we went ahead w/ it even though I still have fine veins. I only got it in September, but so far I love it. I am not too concerned about how it looks fortunately. I have a power port, like a power picc it can do contrast dye for CFs, and to me its bigger than other ports, but I am pretty skinny most the time. I got it on my right chest, above the boob. Some girls get it in the booby fatty tissue so its more hidden, but i have heard it can be harder to access b/c it can move around on the nurse more. The scar I have is taking a long time to fade, but like I said, Im not too concerned. Most shirts cover it. Umm, the worst thing I forsee is getting it flushed every 4-6 weeks, but again I am blessed to have an awesome home health nurse who I can call directly and so we just kinda squeeze me in when its been a month, hopefully something like that will work for you to. The best though is say you call your docs and you feel like you want some ivs, 2 weeks whatever, all they have to do is fax the orders over to home health to get started, no appts. to IR for piccs etc. Plus, you can eventually learn to access your own port (I havent got there yet). I imagine some activies might be bad, like karate (its been talked about on the boards)... but my port doesnt uusually hurt too bad even w/ a direct punch (unless its accessed obviously), but as far as I know, exercise and stuff can still be done the same.
 
 Again, sorry if I was all over the place, I tend to (talk) type a lot <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Tabitha

b12bc · Jul 12, 2010

You seriously don't even realize how fantastic you are! Like I mentioned earlier, I haven't posted much at all here or elsewhere about CF, and therefore haven't been able to talk to very many other people who actually have worthwhile advice. Please continue to (talk) type a lot. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Unfortunately my roomie is NOT much of a cook unless it comes in a package with instructions or can be microwaved. I eat a few of those things, but I absolutely need more "real" food, and a lot of those things are "diet" anyway. I actually really like to cook/shop for food, but it is the last thing I want to do when I'm tired, and the reason I'm tired probably has a lot to do with my diet. Vicious cycle. I have looked into one of those programs, but I was under the impression that they (or at least the company I looked at) cooked "diet" foods - low fat and calories, which is obviously the last thing I need. It would be worthre looking at again though, thanks for mentioning it. Surprisingly my weight hasn't dropped too much since moving out (my nutritionist at the clinic is shocked, I'm sure), but I can feel that I just don't have the energy I used to, which can be attributed to any number of things.

I honestly don't know a whole lot about the port beyond the very basics. I had a bad infection my senior year of HS and was in and out of the hospital with PICCs but 'm a very hard stick and then again the next fall, like I said I spent most of the semester on IVs and my body fought and fought it. Generally a pretty miserable time, I feel like any other option would be better than dealing with that. I'll probably come back with more questions when it becomes a serious consideration.

Another topic (for you or anybody else) - CFRD. I'm borderline and being monitored to see how it develops. I don't know anybody personally with it so I haven't really been able to pick any brains to find out what I'm in for.

b12bc · Jul 12, 2010

You seriously don't even realize how fantastic you are! Like I mentioned earlier, I haven't posted much at all here or elsewhere about CF, and therefore haven't been able to talk to very many other people who actually have worthwhile advice. Please continue to (talk) type a lot. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Unfortunately my roomie is NOT much of a cook unless it comes in a package with instructions or can be microwaved. I eat a few of those things, but I absolutely need more "real" food, and a lot of those things are "diet" anyway. I actually really like to cook/shop for food, but it is the last thing I want to do when I'm tired, and the reason I'm tired probably has a lot to do with my diet. Vicious cycle. I have looked into one of those programs, but I was under the impression that they (or at least the company I looked at) cooked "diet" foods - low fat and calories, which is obviously the last thing I need. It would be worthre looking at again though, thanks for mentioning it. Surprisingly my weight hasn't dropped too much since moving out (my nutritionist at the clinic is shocked, I'm sure), but I can feel that I just don't have the energy I used to, which can be attributed to any number of things.

I honestly don't know a whole lot about the port beyond the very basics. I had a bad infection my senior year of HS and was in and out of the hospital with PICCs but 'm a very hard stick and then again the next fall, like I said I spent most of the semester on IVs and my body fought and fought it. Generally a pretty miserable time, I feel like any other option would be better than dealing with that. I'll probably come back with more questions when it becomes a serious consideration.

Another topic (for you or anybody else) - CFRD. I'm borderline and being monitored to see how it develops. I don't know anybody personally with it so I haven't really been able to pick any brains to find out what I'm in for.

b12bc · Jul 12, 2010

You seriously don't even realize how fantastic you are! Like I mentioned earlier, I haven't posted much at all here or elsewhere about CF, and therefore haven't been able to talk to very many other people who actually have worthwhile advice. Please continue to (talk) type a lot. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
 Unfortunately my roomie is NOT much of a cook unless it comes in a package with instructions or can be microwaved. I eat a few of those things, but I absolutely need more "real" food, and a lot of those things are "diet" anyway. I actually really like to cook/shop for food, but it is the last thing I want to do when I'm tired, and the reason I'm tired probably has a lot to do with my diet. Vicious cycle. I have looked into one of those programs, but I was under the impression that they (or at least the company I looked at) cooked "diet" foods - low fat and calories, which is obviously the last thing I need. It would be worthre looking at again though, thanks for mentioning it. Surprisingly my weight hasn't dropped too much since moving out (my nutritionist at the clinic is shocked, I'm sure), but I can feel that I just don't have the energy I used to, which can be attributed to any number of things.
 
 I honestly don't know a whole lot about the port beyond the very basics. I had a bad infection my senior year of HS and was in and out of the hospital with PICCs but 'm a very hard stick and then again the next fall, like I said I spent most of the semester on IVs and my body fought and fought it. Generally a pretty miserable time, I feel like any other option would be better than dealing with that. I'll probably come back with more questions when it becomes a serious consideration.
 
 Another topic (for you or anybody else) - CFRD. I'm borderline and being monitored to see how it develops. I don't know anybody personally with it so I haven't really been able to pick any brains to find out what I'm in for.

theLostMiler · Jul 15, 2010

I took a long time to write back, because for now, I am out of ideas... you are definitely in a tight spot and I wish I knew a better way to help you out.

Again, I would totally ask your doctors about what they think about a port.

And as for CFRD, I am sometimes borderline (if I am sick, the inflammation really boosts my numbers) but I havent really changed anything in my diet yet.

That is something that is pretty confusing for me at least, I have a CF friend in Maine that has it and she seems to do okay with it, but I do believe there is a bit of a learning curve once you are diagnosed. I saw you answered that your sister has it, so you probably know more about it than I.

If I think of any ideas or you have any updates please post them <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you can find a way to get all the stuff done that we need done, it is always a struggle especially by yourself.

theLostMiler · Jul 15, 2010

I took a long time to write back, because for now, I am out of ideas... you are definitely in a tight spot and I wish I knew a better way to help you out.

Again, I would totally ask your doctors about what they think about a port.

And as for CFRD, I am sometimes borderline (if I am sick, the inflammation really boosts my numbers) but I havent really changed anything in my diet yet.

That is something that is pretty confusing for me at least, I have a CF friend in Maine that has it and she seems to do okay with it, but I do believe there is a bit of a learning curve once you are diagnosed. I saw you answered that your sister has it, so you probably know more about it than I.

If I think of any ideas or you have any updates please post them <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope you can find a way to get all the stuff done that we need done, it is always a struggle especially by yourself.

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