Moms w/Cf- Coping with Tuneups

[mamaScarlett]

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

im posting this again, with a brief update, to give it a bump... i put it the pregnancy section a few weeks ago. for anyone who didn't see it last time. thanks for reading:



For those of you who are already moms and dads... wanted to let you know about an event i'm putting together for next fall - on Sunday October 18th. I'm a mom with cf and i'm also a social worker. I brought this idea to a local family service agency and they're agreed to help me make this a reality!



Its going to be a fall festival/family day for parents with chronic illness and their kids. We will have expert speakers and workshops for parents on things like talking to your kids about your illness, making your routine part of your family's normal, how to handle hospitalizations,etc. For the kids there will be art therapy, yoga/movement/stress relief and age appropriate workshops. All this plus pure family fun time -- with fall activities like hay rides, apple bobbing, pumpkin decorating, etc.



I'm writing to mention it now for a few reasons:

1. First I want to know if an event like this would interest any of you?



2. If so, trying to figure out how to make it accessible for you, wherever you're living... The event will take place at a beautiful camp in a suburb of Milwaukee, Wisconsin. We're looking into funding sources now and if there's a lot of interest, we would aim to set up a scholarship to help people travel to be here. The event itself will be totally free! *infection control precautions/restrictions would apply for patients with cepacia and MRSA.



3. Wondering if people who couldn't attend in person would be interested in viewing the speaker portion of the event if we were to tape it and make dvd's available for free or post the video online?



Would love your feedback!!! Thanks so much.</end quote></div>

it would interest me very much, however I can't attend any cf functions bc of being b.cep positive and I am on the East Coast.
it would be wonderful if you could organize a podcast along with this event, or at least video footage and interviews for those that can't attend.
i think its a wonderful idea. there's just not enough resources for such a specific genre of Cf. talking to other parents is really the best resource. getting tips-like the ones we are reading here.
sometimes its a just a boost that we need.
i've been feeling lately like there is not a soul in the world that can understand what this is like-to be doing ivs ect while parenting a 2 yr old.
but i forgot that there is!!!

 

[mamaScarlett]

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

im posting this again, with a brief update, to give it a bump... i put it the pregnancy section a few weeks ago. for anyone who didn't see it last time. thanks for reading:



For those of you who are already moms and dads... wanted to let you know about an event i'm putting together for next fall - on Sunday October 18th. I'm a mom with cf and i'm also a social worker. I brought this idea to a local family service agency and they're agreed to help me make this a reality!



Its going to be a fall festival/family day for parents with chronic illness and their kids. We will have expert speakers and workshops for parents on things like talking to your kids about your illness, making your routine part of your family's normal, how to handle hospitalizations,etc. For the kids there will be art therapy, yoga/movement/stress relief and age appropriate workshops. All this plus pure family fun time -- with fall activities like hay rides, apple bobbing, pumpkin decorating, etc.



I'm writing to mention it now for a few reasons:

1. First I want to know if an event like this would interest any of you?



2. If so, trying to figure out how to make it accessible for you, wherever you're living... The event will take place at a beautiful camp in a suburb of Milwaukee, Wisconsin. We're looking into funding sources now and if there's a lot of interest, we would aim to set up a scholarship to help people travel to be here. The event itself will be totally free! *infection control precautions/restrictions would apply for patients with cepacia and MRSA.



3. Wondering if people who couldn't attend in person would be interested in viewing the speaker portion of the event if we were to tape it and make dvd's available for free or post the video online?



Would love your feedback!!! Thanks so much.</end quote></div>

it would interest me very much, however I can't attend any cf functions bc of being b.cep positive and I am on the East Coast.
it would be wonderful if you could organize a podcast along with this event, or at least video footage and interviews for those that can't attend.
i think its a wonderful idea. there's just not enough resources for such a specific genre of Cf. talking to other parents is really the best resource. getting tips-like the ones we are reading here.
sometimes its a just a boost that we need.
i've been feeling lately like there is not a soul in the world that can understand what this is like-to be doing ivs ect while parenting a 2 yr old.
but i forgot that there is!!!

 

[mamaScarlett]

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

im posting this again, with a brief update, to give it a bump... i put it the pregnancy section a few weeks ago. for anyone who didn't see it last time. thanks for reading:



For those of you who are already moms and dads... wanted to let you know about an event i'm putting together for next fall - on Sunday October 18th. I'm a mom with cf and i'm also a social worker. I brought this idea to a local family service agency and they're agreed to help me make this a reality!



Its going to be a fall festival/family day for parents with chronic illness and their kids. We will have expert speakers and workshops for parents on things like talking to your kids about your illness, making your routine part of your family's normal, how to handle hospitalizations,etc. For the kids there will be art therapy, yoga/movement/stress relief and age appropriate workshops. All this plus pure family fun time -- with fall activities like hay rides, apple bobbing, pumpkin decorating, etc.



I'm writing to mention it now for a few reasons:

1. First I want to know if an event like this would interest any of you?



2. If so, trying to figure out how to make it accessible for you, wherever you're living... The event will take place at a beautiful camp in a suburb of Milwaukee, Wisconsin. We're looking into funding sources now and if there's a lot of interest, we would aim to set up a scholarship to help people travel to be here. The event itself will be totally free! *infection control precautions/restrictions would apply for patients with cepacia and MRSA.



3. Wondering if people who couldn't attend in person would be interested in viewing the speaker portion of the event if we were to tape it and make dvd's available for free or post the video online?



Would love your feedback!!! Thanks so much.</end quote></div>

it would interest me very much, however I can't attend any cf functions bc of being b.cep positive and I am on the East Coast.
it would be wonderful if you could organize a podcast along with this event, or at least video footage and interviews for those that can't attend.
i think its a wonderful idea. there's just not enough resources for such a specific genre of Cf. talking to other parents is really the best resource. getting tips-like the ones we are reading here.
sometimes its a just a boost that we need.
i've been feeling lately like there is not a soul in the world that can understand what this is like-to be doing ivs ect while parenting a 2 yr old.
but i forgot that there is!!!

 

[mamaScarlett]

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

im posting this again, with a brief update, to give it a bump... i put it the pregnancy section a few weeks ago. for anyone who didn't see it last time. thanks for reading:



For those of you who are already moms and dads... wanted to let you know about an event i'm putting together for next fall - on Sunday October 18th. I'm a mom with cf and i'm also a social worker. I brought this idea to a local family service agency and they're agreed to help me make this a reality!



Its going to be a fall festival/family day for parents with chronic illness and their kids. We will have expert speakers and workshops for parents on things like talking to your kids about your illness, making your routine part of your family's normal, how to handle hospitalizations,etc. For the kids there will be art therapy, yoga/movement/stress relief and age appropriate workshops. All this plus pure family fun time -- with fall activities like hay rides, apple bobbing, pumpkin decorating, etc.



I'm writing to mention it now for a few reasons:

1. First I want to know if an event like this would interest any of you?



2. If so, trying to figure out how to make it accessible for you, wherever you're living... The event will take place at a beautiful camp in a suburb of Milwaukee, Wisconsin. We're looking into funding sources now and if there's a lot of interest, we would aim to set up a scholarship to help people travel to be here. The event itself will be totally free! *infection control precautions/restrictions would apply for patients with cepacia and MRSA.



3. Wondering if people who couldn't attend in person would be interested in viewing the speaker portion of the event if we were to tape it and make dvd's available for free or post the video online?



Would love your feedback!!! Thanks so much.</end quote>

it would interest me very much, however I can't attend any cf functions bc of being b.cep positive and I am on the East Coast.
it would be wonderful if you could organize a podcast along with this event, or at least video footage and interviews for those that can't attend.
i think its a wonderful idea. there's just not enough resources for such a specific genre of Cf. talking to other parents is really the best resource. getting tips-like the ones we are reading here.
sometimes its a just a boost that we need.
i've been feeling lately like there is not a soul in the world that can understand what this is like-to be doing ivs ect while parenting a 2 yr old.
but i forgot that there is!!!

 

[mamaScarlett]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TIN</b></i>
<br />
<br />im posting this again, with a brief update, to give it a bump... i put it the pregnancy section a few weeks ago. for anyone who didn't see it last time. thanks for reading:
<br />
<br />
<br />
<br />For those of you who are already moms and dads... wanted to let you know about an event i'm putting together for next fall - on Sunday October 18th. I'm a mom with cf and i'm also a social worker. I brought this idea to a local family service agency and they're agreed to help me make this a reality!
<br />
<br />
<br />
<br />Its going to be a fall festival/family day for parents with chronic illness and their kids. We will have expert speakers and workshops for parents on things like talking to your kids about your illness, making your routine part of your family's normal, how to handle hospitalizations,etc. For the kids there will be art therapy, yoga/movement/stress relief and age appropriate workshops. All this plus pure family fun time -- with fall activities like hay rides, apple bobbing, pumpkin decorating, etc.
<br />
<br />
<br />
<br />I'm writing to mention it now for a few reasons:
<br />
<br />1. First I want to know if an event like this would interest any of you?
<br />
<br />
<br />
<br />2. If so, trying to figure out how to make it accessible for you, wherever you're living... The event will take place at a beautiful camp in a suburb of Milwaukee, Wisconsin. We're looking into funding sources now and if there's a lot of interest, we would aim to set up a scholarship to help people travel to be here. The event itself will be totally free! *infection control precautions/restrictions would apply for patients with cepacia and MRSA.
<br />
<br />
<br />
<br />3. Wondering if people who couldn't attend in person would be interested in viewing the speaker portion of the event if we were to tape it and make dvd's available for free or post the video online?
<br />
<br />
<br />
<br />Would love your feedback!!! Thanks so much.</end quote>
<br />
<br />it would interest me very much, however I can't attend any cf functions bc of being b.cep positive and I am on the East Coast.
<br />it would be wonderful if you could organize a podcast along with this event, or at least video footage and interviews for those that can't attend.
<br />i think its a wonderful idea. there's just not enough resources for such a specific genre of Cf. talking to other parents is really the best resource. getting tips-like the ones we are reading here.
<br />sometimes its a just a boost that we need.
<br />i've been feeling lately like there is not a soul in the world that can understand what this is like-to be doing ivs ect while parenting a 2 yr old.
<br />but i forgot that there is!!!

 

[mom2lillian]

I have been lucky so far having done 2 round IV's (within a month of one another) so basically just once with them since DD was born and zero in lock up so perhaps my mechansims will need more work.

Anyway I had DH take DD to daycare during the day and I would fit in tobi plus 2 doses of the other and 3 breathing treatments into that time so at nigth I just had one breathign treatment and IV to do that I did after she went to bed. I didnt cook much, mostly relied on vac sealed frozen dinners that I freeze when I cook extra. I also took off of work so I could rest when not doing treatments.

I have slowly come to realize the importance of rest when ill so I dont think I could/would/should do it with DD at home. So if you are SAHM I would think you would need someone to watch them at least a bit during the day for a nap.

I have a port so no good tips from me there but the sock/leg warmer idea sounded good.

I also take 1-2 days off after IV's end if they are work days so that I can rest as I still feel the med effects adn am wiped out during that time. This gives me the jumpstart on rest I feel I need.

Oh and I have my sister come clean my house at least once during that time so I can rest wthotu freaking out about what needs done.

 

[mom2lillian]

I have been lucky so far having done 2 round IV's (within a month of one another) so basically just once with them since DD was born and zero in lock up so perhaps my mechansims will need more work.

Anyway I had DH take DD to daycare during the day and I would fit in tobi plus 2 doses of the other and 3 breathing treatments into that time so at nigth I just had one breathign treatment and IV to do that I did after she went to bed. I didnt cook much, mostly relied on vac sealed frozen dinners that I freeze when I cook extra. I also took off of work so I could rest when not doing treatments.

I have slowly come to realize the importance of rest when ill so I dont think I could/would/should do it with DD at home. So if you are SAHM I would think you would need someone to watch them at least a bit during the day for a nap.

I have a port so no good tips from me there but the sock/leg warmer idea sounded good.

I also take 1-2 days off after IV's end if they are work days so that I can rest as I still feel the med effects adn am wiped out during that time. This gives me the jumpstart on rest I feel I need.

Oh and I have my sister come clean my house at least once during that time so I can rest wthotu freaking out about what needs done.

 

[mom2lillian]

I have been lucky so far having done 2 round IV's (within a month of one another) so basically just once with them since DD was born and zero in lock up so perhaps my mechansims will need more work.

Anyway I had DH take DD to daycare during the day and I would fit in tobi plus 2 doses of the other and 3 breathing treatments into that time so at nigth I just had one breathign treatment and IV to do that I did after she went to bed. I didnt cook much, mostly relied on vac sealed frozen dinners that I freeze when I cook extra. I also took off of work so I could rest when not doing treatments.

I have slowly come to realize the importance of rest when ill so I dont think I could/would/should do it with DD at home. So if you are SAHM I would think you would need someone to watch them at least a bit during the day for a nap.

I have a port so no good tips from me there but the sock/leg warmer idea sounded good.

I also take 1-2 days off after IV's end if they are work days so that I can rest as I still feel the med effects adn am wiped out during that time. This gives me the jumpstart on rest I feel I need.

Oh and I have my sister come clean my house at least once during that time so I can rest wthotu freaking out about what needs done.

 

[mom2lillian]

I have been lucky so far having done 2 round IV's (within a month of one another) so basically just once with them since DD was born and zero in lock up so perhaps my mechansims will need more work.

Anyway I had DH take DD to daycare during the day and I would fit in tobi plus 2 doses of the other and 3 breathing treatments into that time so at nigth I just had one breathign treatment and IV to do that I did after she went to bed. I didnt cook much, mostly relied on vac sealed frozen dinners that I freeze when I cook extra. I also took off of work so I could rest when not doing treatments.

I have slowly come to realize the importance of rest when ill so I dont think I could/would/should do it with DD at home. So if you are SAHM I would think you would need someone to watch them at least a bit during the day for a nap.

I have a port so no good tips from me there but the sock/leg warmer idea sounded good.

I also take 1-2 days off after IV's end if they are work days so that I can rest as I still feel the med effects adn am wiped out during that time. This gives me the jumpstart on rest I feel I need.

Oh and I have my sister come clean my house at least once during that time so I can rest wthotu freaking out about what needs done.

 

[mom2lillian]

I have been lucky so far having done 2 round IV's (within a month of one another) so basically just once with them since DD was born and zero in lock up so perhaps my mechansims will need more work.
<br />
<br />Anyway I had DH take DD to daycare during the day and I would fit in tobi plus 2 doses of the other and 3 breathing treatments into that time so at nigth I just had one breathign treatment and IV to do that I did after she went to bed. I didnt cook much, mostly relied on vac sealed frozen dinners that I freeze when I cook extra. I also took off of work so I could rest when not doing treatments.
<br />
<br />I have slowly come to realize the importance of rest when ill so I dont think I could/would/should do it with DD at home. So if you are SAHM I would think you would need someone to watch them at least a bit during the day for a nap.
<br />
<br />I have a port so no good tips from me there but the sock/leg warmer idea sounded good.
<br />
<br />I also take 1-2 days off after IV's end if they are work days so that I can rest as I still feel the med effects adn am wiped out during that time. This gives me the jumpstart on rest I feel I need.
<br />
<br />Oh and I have my sister come clean my house at least once during that time so I can rest wthotu freaking out about what needs done.
<br />
<br />

 

[mom2lillian]

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

<i>Right now I feel kinda like supermom. (or maybe its crazymom?-?)

My theory is this:Why wait till the end of summer when I crash from the activity, to have my pfts in the 50s and have to work to get them back up to the 60s...when I can do this now and maybe get them back to my old baseline of 75%?

What do you think?</i>

I think this sounds like a very proactive responsible mom! Just remind yourself of why you are doing it (healthier longer life) when you get 'down'.

This week I am starting an exercise routine-pilates 3x a week, weight training 2x a week and 30 min aerobic every other day. I'm going to do it while my daughter naps-that gives me 2 hrs to workout.

<i>What do you guys do on the workout end?</i>

I go to the gym right now because our current house cant accomodate a gym space but that is my hope for our next house. I am nursing a knee injury this week but my normal schedule is an hour at the gym in the mornings. I have not been on schedule for a bit but I try to run MWF (knee may push this back to elliptical) and then do spinning on T and a variety class on TH. On MWF I try to do at least 20 min weights.

<i>Sigh, so I'm trying. I think its a mental thing. It has to be penciled in to the calendar-Maybe if I started thinking about it the way I think about chest pt, that I'd never ever miss a day-then I could stick with it.</i>

It does become a metnal thing but once you do it a while you dont feel well if you dont do it and I notice an incredible difference in my mucous clearance if I am not pushing/challenging myself.

I would highly encourage you to scale back from 2 hours a day to start with because that will leave you no time during naps to pick up do chores etc for 1 whcih will get you behind and freaked out and for 2 you are going from zero to 100 too quickly and will get too sore, too tired and overall discouraged.

<i>Balancing all this is tiring me. Some days I am on the verge of thinking I have it all together, or on the verge of breaking into tears. </i>

A MEN to that, some days I feel like I'm on top of everything and others (more often than not lately) I feel like I am a 'c' student in all arenas and Cs are soooo not me.
<i>
I'm a very scheduled person. I pencil in everything. I make lists. I guess I'm just tired and a little discouraged right now.</i>

Me too and when something makes us feel like we are not in control it freaks us out right? So you just have to let go a bit, figure out what is in yoru control and work on that--easier said than done I know. Like for me I have always been A+ with work but now I try hard to remind myself of the balance and do the best I can.

<i>What do your kids do while you are doing chest pt?</i>
I have a special tin with fun things, markers, paper, stickers, small toys etc in it for her when she is with me.

</end quote></div>

 

[mom2lillian]

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

<i>Right now I feel kinda like supermom. (or maybe its crazymom?-?)

My theory is this:Why wait till the end of summer when I crash from the activity, to have my pfts in the 50s and have to work to get them back up to the 60s...when I can do this now and maybe get them back to my old baseline of 75%?

What do you think?</i>

I think this sounds like a very proactive responsible mom! Just remind yourself of why you are doing it (healthier longer life) when you get 'down'.

This week I am starting an exercise routine-pilates 3x a week, weight training 2x a week and 30 min aerobic every other day. I'm going to do it while my daughter naps-that gives me 2 hrs to workout.

<i>What do you guys do on the workout end?</i>

I go to the gym right now because our current house cant accomodate a gym space but that is my hope for our next house. I am nursing a knee injury this week but my normal schedule is an hour at the gym in the mornings. I have not been on schedule for a bit but I try to run MWF (knee may push this back to elliptical) and then do spinning on T and a variety class on TH. On MWF I try to do at least 20 min weights.

<i>Sigh, so I'm trying. I think its a mental thing. It has to be penciled in to the calendar-Maybe if I started thinking about it the way I think about chest pt, that I'd never ever miss a day-then I could stick with it.</i>

It does become a metnal thing but once you do it a while you dont feel well if you dont do it and I notice an incredible difference in my mucous clearance if I am not pushing/challenging myself.

I would highly encourage you to scale back from 2 hours a day to start with because that will leave you no time during naps to pick up do chores etc for 1 whcih will get you behind and freaked out and for 2 you are going from zero to 100 too quickly and will get too sore, too tired and overall discouraged.

<i>Balancing all this is tiring me. Some days I am on the verge of thinking I have it all together, or on the verge of breaking into tears. </i>

A MEN to that, some days I feel like I'm on top of everything and others (more often than not lately) I feel like I am a 'c' student in all arenas and Cs are soooo not me.
<i>
I'm a very scheduled person. I pencil in everything. I make lists. I guess I'm just tired and a little discouraged right now.</i>

Me too and when something makes us feel like we are not in control it freaks us out right? So you just have to let go a bit, figure out what is in yoru control and work on that--easier said than done I know. Like for me I have always been A+ with work but now I try hard to remind myself of the balance and do the best I can.

<i>What do your kids do while you are doing chest pt?</i>
I have a special tin with fun things, markers, paper, stickers, small toys etc in it for her when she is with me.

</end quote></div>

 

[mom2lillian]

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

<i>Right now I feel kinda like supermom. (or maybe its crazymom?-?)

My theory is this:Why wait till the end of summer when I crash from the activity, to have my pfts in the 50s and have to work to get them back up to the 60s...when I can do this now and maybe get them back to my old baseline of 75%?

What do you think?</i>

I think this sounds like a very proactive responsible mom! Just remind yourself of why you are doing it (healthier longer life) when you get 'down'.

This week I am starting an exercise routine-pilates 3x a week, weight training 2x a week and 30 min aerobic every other day. I'm going to do it while my daughter naps-that gives me 2 hrs to workout.

<i>What do you guys do on the workout end?</i>

I go to the gym right now because our current house cant accomodate a gym space but that is my hope for our next house. I am nursing a knee injury this week but my normal schedule is an hour at the gym in the mornings. I have not been on schedule for a bit but I try to run MWF (knee may push this back to elliptical) and then do spinning on T and a variety class on TH. On MWF I try to do at least 20 min weights.

<i>Sigh, so I'm trying. I think its a mental thing. It has to be penciled in to the calendar-Maybe if I started thinking about it the way I think about chest pt, that I'd never ever miss a day-then I could stick with it.</i>

It does become a metnal thing but once you do it a while you dont feel well if you dont do it and I notice an incredible difference in my mucous clearance if I am not pushing/challenging myself.

I would highly encourage you to scale back from 2 hours a day to start with because that will leave you no time during naps to pick up do chores etc for 1 whcih will get you behind and freaked out and for 2 you are going from zero to 100 too quickly and will get too sore, too tired and overall discouraged.

<i>Balancing all this is tiring me. Some days I am on the verge of thinking I have it all together, or on the verge of breaking into tears. </i>

A MEN to that, some days I feel like I'm on top of everything and others (more often than not lately) I feel like I am a 'c' student in all arenas and Cs are soooo not me.
<i>
I'm a very scheduled person. I pencil in everything. I make lists. I guess I'm just tired and a little discouraged right now.</i>

Me too and when something makes us feel like we are not in control it freaks us out right? So you just have to let go a bit, figure out what is in yoru control and work on that--easier said than done I know. Like for me I have always been A+ with work but now I try hard to remind myself of the balance and do the best I can.

<i>What do your kids do while you are doing chest pt?</i>
I have a special tin with fun things, markers, paper, stickers, small toys etc in it for her when she is with me.

</end quote></div>

 

[mom2lillian]

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

<i>Right now I feel kinda like supermom. (or maybe its crazymom?-?)

My theory is this:Why wait till the end of summer when I crash from the activity, to have my pfts in the 50s and have to work to get them back up to the 60s...when I can do this now and maybe get them back to my old baseline of 75%?

What do you think?</i>

I think this sounds like a very proactive responsible mom! Just remind yourself of why you are doing it (healthier longer life) when you get 'down'.

This week I am starting an exercise routine-pilates 3x a week, weight training 2x a week and 30 min aerobic every other day. I'm going to do it while my daughter naps-that gives me 2 hrs to workout.

<i>What do you guys do on the workout end?</i>

I go to the gym right now because our current house cant accomodate a gym space but that is my hope for our next house. I am nursing a knee injury this week but my normal schedule is an hour at the gym in the mornings. I have not been on schedule for a bit but I try to run MWF (knee may push this back to elliptical) and then do spinning on T and a variety class on TH. On MWF I try to do at least 20 min weights.

<i>Sigh, so I'm trying. I think its a mental thing. It has to be penciled in to the calendar-Maybe if I started thinking about it the way I think about chest pt, that I'd never ever miss a day-then I could stick with it.</i>

It does become a metnal thing but once you do it a while you dont feel well if you dont do it and I notice an incredible difference in my mucous clearance if I am not pushing/challenging myself.

I would highly encourage you to scale back from 2 hours a day to start with because that will leave you no time during naps to pick up do chores etc for 1 whcih will get you behind and freaked out and for 2 you are going from zero to 100 too quickly and will get too sore, too tired and overall discouraged.

<i>Balancing all this is tiring me. Some days I am on the verge of thinking I have it all together, or on the verge of breaking into tears. </i>

A MEN to that, some days I feel like I'm on top of everything and others (more often than not lately) I feel like I am a 'c' student in all arenas and Cs are soooo not me.
<i>
I'm a very scheduled person. I pencil in everything. I make lists. I guess I'm just tired and a little discouraged right now.</i>

Me too and when something makes us feel like we are not in control it freaks us out right? So you just have to let go a bit, figure out what is in yoru control and work on that--easier said than done I know. Like for me I have always been A+ with work but now I try hard to remind myself of the balance and do the best I can.

<i>What do your kids do while you are doing chest pt?</i>
I have a special tin with fun things, markers, paper, stickers, small toys etc in it for her when she is with me.

</end quote>

 

[mom2lillian]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>christian</b></i>
<br />
<br /><i>Right now I feel kinda like supermom. (or maybe its crazymom?-?)
<br />
<br />My theory is this:Why wait till the end of summer when I crash from the activity, to have my pfts in the 50s and have to work to get them back up to the 60s...when I can do this now and maybe get them back to my old baseline of 75%?
<br />
<br />What do you think?</i>
<br />
<br />I think this sounds like a very proactive responsible mom! Just remind yourself of why you are doing it (healthier longer life) when you get 'down'.
<br />
<br />This week I am starting an exercise routine-pilates 3x a week, weight training 2x a week and 30 min aerobic every other day. I'm going to do it while my daughter naps-that gives me 2 hrs to workout.
<br />
<br /><i>What do you guys do on the workout end?</i>
<br />
<br />I go to the gym right now because our current house cant accomodate a gym space but that is my hope for our next house. I am nursing a knee injury this week but my normal schedule is an hour at the gym in the mornings. I have not been on schedule for a bit but I try to run MWF (knee may push this back to elliptical) and then do spinning on T and a variety class on TH. On MWF I try to do at least 20 min weights.
<br />
<br /><i>Sigh, so I'm trying. I think its a mental thing. It has to be penciled in to the calendar-Maybe if I started thinking about it the way I think about chest pt, that I'd never ever miss a day-then I could stick with it.</i>
<br />
<br />It does become a metnal thing but once you do it a while you dont feel well if you dont do it and I notice an incredible difference in my mucous clearance if I am not pushing/challenging myself.
<br />
<br />I would highly encourage you to scale back from 2 hours a day to start with because that will leave you no time during naps to pick up do chores etc for 1 whcih will get you behind and freaked out and for 2 you are going from zero to 100 too quickly and will get too sore, too tired and overall discouraged.
<br />
<br /><i>Balancing all this is tiring me. Some days I am on the verge of thinking I have it all together, or on the verge of breaking into tears. </i>
<br />
<br />A MEN to that, some days I feel like I'm on top of everything and others (more often than not lately) I feel like I am a 'c' student in all arenas and Cs are soooo not me.
<br /><i>
<br />I'm a very scheduled person. I pencil in everything. I make lists. I guess I'm just tired and a little discouraged right now.</i>
<br />
<br />Me too and when something makes us feel like we are not in control it freaks us out right? So you just have to let go a bit, figure out what is in yoru control and work on that--easier said than done I know. Like for me I have always been A+ with work but now I try hard to remind myself of the balance and do the best I can.
<br />
<br /><i>What do your kids do while you are doing chest pt?</i>
<br />I have a special tin with fun things, markers, paper, stickers, small toys etc in it for her when she is with me.
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<br />

 

[Tumbleweed]

I too have a port, which makes things easier. No snagging, I can move my arms very freely of course. Another thing I have learned is to ask for a "pump" at home if they have them. That way it electronically administers my medication during the night while my husband and I are asleep. I understand that all of you might not have that available, but it doesn't hurt to ask and find out.... SLEEP IS HUGE!!!!!

Wow. I have great support from my husband and my mom and I don't have a job outside of the home, and things are hard enough... I don't know how you guys do all that. Quite amazing!

I have to be on IVs usually a couple times a year. It gets hard. My son isn't the one that usually makes it hard for me though. It is just <i>hard period</i>. Side effects, no (good) showers etc. I don't leave the house. My house "becomes the hospital"... I cannot image going to work etc.

As far as being interested in a retreat or camp, no, I culture mrsa and a couple other bugs. Video podcasts sound great though. Yes, it helps to know that others understand. Sometimes I also feel that no one knows my "secret life with CF" even though I tell everyone I have it and they know I am sick. I guess it's just one of those things you don't <i>know</i> till you have been there.

 

[Tumbleweed]

I too have a port, which makes things easier. No snagging, I can move my arms very freely of course. Another thing I have learned is to ask for a "pump" at home if they have them. That way it electronically administers my medication during the night while my husband and I are asleep. I understand that all of you might not have that available, but it doesn't hurt to ask and find out.... SLEEP IS HUGE!!!!!

Wow. I have great support from my husband and my mom and I don't have a job outside of the home, and things are hard enough... I don't know how you guys do all that. Quite amazing!

I have to be on IVs usually a couple times a year. It gets hard. My son isn't the one that usually makes it hard for me though. It is just <i>hard period</i>. Side effects, no (good) showers etc. I don't leave the house. My house "becomes the hospital"... I cannot image going to work etc.

As far as being interested in a retreat or camp, no, I culture mrsa and a couple other bugs. Video podcasts sound great though. Yes, it helps to know that others understand. Sometimes I also feel that no one knows my "secret life with CF" even though I tell everyone I have it and they know I am sick. I guess it's just one of those things you don't <i>know</i> till you have been there.

 

[Tumbleweed]

I too have a port, which makes things easier. No snagging, I can move my arms very freely of course. Another thing I have learned is to ask for a "pump" at home if they have them. That way it electronically administers my medication during the night while my husband and I are asleep. I understand that all of you might not have that available, but it doesn't hurt to ask and find out.... SLEEP IS HUGE!!!!!

Wow. I have great support from my husband and my mom and I don't have a job outside of the home, and things are hard enough... I don't know how you guys do all that. Quite amazing!

I have to be on IVs usually a couple times a year. It gets hard. My son isn't the one that usually makes it hard for me though. It is just <i>hard period</i>. Side effects, no (good) showers etc. I don't leave the house. My house "becomes the hospital"... I cannot image going to work etc.

As far as being interested in a retreat or camp, no, I culture mrsa and a couple other bugs. Video podcasts sound great though. Yes, it helps to know that others understand. Sometimes I also feel that no one knows my "secret life with CF" even though I tell everyone I have it and they know I am sick. I guess it's just one of those things you don't <i>know</i> till you have been there.

 

[Tumbleweed]

I too have a port, which makes things easier. No snagging, I can move my arms very freely of course. Another thing I have learned is to ask for a "pump" at home if they have them. That way it electronically administers my medication during the night while my husband and I are asleep. I understand that all of you might not have that available, but it doesn't hurt to ask and find out.... SLEEP IS HUGE!!!!!

Wow. I have great support from my husband and my mom and I don't have a job outside of the home, and things are hard enough... I don't know how you guys do all that. Quite amazing!

I have to be on IVs usually a couple times a year. It gets hard. My son isn't the one that usually makes it hard for me though. It is just <i>hard period</i>. Side effects, no (good) showers etc. I don't leave the house. My house "becomes the hospital"... I cannot image going to work etc.

As far as being interested in a retreat or camp, no, I culture mrsa and a couple other bugs. Video podcasts sound great though. Yes, it helps to know that others understand. Sometimes I also feel that no one knows my "secret life with CF" even though I tell everyone I have it and they know I am sick. I guess it's just one of those things you don't <i>know</i> till you have been there.

 

[Tumbleweed]

I too have a port, which makes things easier. No snagging, I can move my arms very freely of course. Another thing I have learned is to ask for a "pump" at home if they have them. That way it electronically administers my medication during the night while my husband and I are asleep. I understand that all of you might not have that available, but it doesn't hurt to ask and find out.... SLEEP IS HUGE!!!!!
<br />
<br />Wow. I have great support from my husband and my mom and I don't have a job outside of the home, and things are hard enough... I don't know how you guys do all that. Quite amazing!
<br />
<br />I have to be on IVs usually a couple times a year. It gets hard. My son isn't the one that usually makes it hard for me though. It is just <i>hard period</i>. Side effects, no (good) showers etc. I don't leave the house. My house "becomes the hospital"... I cannot image going to work etc.
<br />
<br />As far as being interested in a retreat or camp, no, I culture mrsa and a couple other bugs. Video podcasts sound great though. Yes, it helps to know that others understand. Sometimes I also feel that no one knows my "secret life with CF" even though I tell everyone I have it and they know I am sick. I guess it's just one of those things you don't <i>know</i> till you have been there.