Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 Annette, Tom has NEVER missed and infusion....he's also there for all major tests. But he never goes to the ped w/us. The " little stuff " we always do on our own. As for chores....well....he helps some....we do have hired help to do the cleaning, but as you all know, cleaning is only a small portion of all that has to be done. I very often feel very overwhelmed with all the things to be done around the house. I'm thinking that life will get much easier now that Zach's in school. I have analyzed how my situation is different from my peers and I have concluded that Zach's diet consumes alot of my time. I make most stuff from scratch and always have. I spend most of my day in the kitchen dirtying it up, cooking, cleaning up, then starting all over again. I long for the day when I'll just be able to open the package, warm it & eat it.... But I do enjoy my time with Zachary. I feel so blessed. Take Care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 1999 Report Share Posted November 14, 1999 : Your Tom certainly is very supportive of your situation with Zach and you should become a dietician expert with Zach's diet. Thank you for sharing about how things are. I guess today we will decide whether to continue on the way we are or seperate when finances allow it. I hope the sociologist will have some answers for our relationship. We have been together for thirteen years and it has become a battle between fighting to have all our healthcare needs met all the time and having them paid. Sorry for all the whining but I do not know that an argumentative environment is good for the health of my child, thank you for listening, we are truly blessed with kind doctors and friends, God Bless, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: husband's help >Date: Sun, 14 Nov 1999 17:28:01 -0500 > >Annette, > >Tom has NEVER missed and infusion....he's also there for all major tests. >But he never goes to the ped w/us. The " little stuff " we always do on our >own. As for chores....well....he helps some....we do have hired help to do >the cleaning, but as you all know, cleaning is only a small portion of all >that has to be done. I very often feel very overwhelmed with all the >things >to be done around the house. I'm thinking that life will get much easier >now that Zach's in school. I have analyzed how my situation is different >from my peers and I have concluded that Zach's diet consumes alot of my >time. I make most stuff from scratch and always have. I spend most of my >day in the kitchen dirtying it up, cooking, cleaning up, then starting all >over again. I long for the day when I'll just be able to open the >package, >warm it & eat it.... >But I do enjoy my time with Zachary. I feel so blessed. >Take Care, > > > > >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 1999 Report Share Posted November 15, 1999 Dear : It is funny everything that you have stated is what the sociologist suggested so sunday, we will leave alissa with my dad and we will go out somewhere. I will let you know what happens, we are in Arizona and the only sitter we really trust is my boss who also has an immune compromised daughter also. She has watched alissa a couple of times. But she is always on shift at urgent care. We are going to try and work out alot but it just gets old after so many years of it!!!!!!1 thanks for sharing, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: husband's help >Date: Mon, 15 Nov 1999 11:00:46 -0500 > >Annette, > >I'm sure that things are pretty deep with you and your husband. Having and >ill child is definately a strain on a relationship. Tom and I say that if >we make it through this, we'll make it through anything. Let me tell you >there are many things that we do to help keep ourselves sane. Yes, we used >to fight about the chores, that's why we decided to hire in help. I >realize >that financially this could be difficult, but let me tell you, it is worth >every penny! Adjust you budget to try to fit this in.... It has reduced my >stress level and Tom & I argue much less. It's only $40 per week, she >mops, >vacuums, dusts, cleans bathrooms, scrubs the kitchen(stove, microwave etc), >and changes the sheets. She gets it all done in a couple of hours then >it's >done! then once a week, Tom & I both go through & touch up...vacuuming, >mopping, laundry.... >we joke & say that our help has been a marriage saver....but it truely has >contributed alot! >Another thing I do is get away alone! This is also very important. You >need time away to do nothing, worry about nothing, and to argue about >nothing.....We're fortunate that we have a beach house that I can run away >to, but you don't have to go out of town.....find a friend that you can >stay >overnight with, or find a cheap hotel, or If you're in NY(aren't you?) >the >state parks have really nice cabins that rent for like 20 or so a >night.....this way, while you're gone, you'll refresh yourself and believe >it or not, your family will appreciate you much more when you >return....you'll get a little respect....it doesn't last forever, but it >gives you the necessary boost to keep moving in a positive direction. >And give this to your husband too. Many times we wives are needy cuz we >are >left to do it by ourselves alot....but where are they???...working....it's >not exactly fun for them.... >And lastly.....make time for each other! Have a " date " at least once a >month, better yet, twice. Find someone you can " swap kids with " , most >churches have babbysitting co-ops. And if you cannot afford dinner, >realize >that out doesn't have to cost money. You can go hiking, stolling through >the city, to a museum (most have a " free " day), go for a long country drive > & >have a picnic.....refresh your relationship. Make your husband know that >he >counts in your life.... >Tom knows that I love Zach soooo much, he says, I love you and Zach >equally, > & I know you love him more than me but I'm OK with that. And it is so true, >that bond I have with my child is so strong, I don't ove Tom less, just >differently. > >Annette, I hope that you can work things out. I believe that marriage is >forever. It's a very difficult struggle, but it can work. > I'll pray for you two, > > > >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 , Alissa is ten years old, and still I am trying to get her to take responsibility for the thirteen drugs she is on, because as long as she refuses I must make sure she takes them on time. The therapist is also trying ways to get her to take responsibility for everything also. I do not want to follow her to college either, she is in half days of school right due to her fatigue level. With her asthma, I have to have someone that is trained in at least how to use an svn machine and recognise when she is having an asthma attack. I do not feel comfortable in leaving her with any teenager that does not even have cpr training. I was ready to let go along time ago, my nurse supervisors daughter is twelve and does her own meds and knows when she is in danger and needs professional help. That is our goal, And until she does not have anymore suicidal thoughts going on in her mind my family will watch over her. I am glad that is so self efficient and hope to bring my daughter to that level. Also after her ivig treatments she cannot walk straight for sometimes two days due to how the IVIG effects her ataxia. Thanks for your imput. God Bless, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: husband's help >Date: Tue, 16 Nov 1999 09:46:24 -0500 > >Annette, > >I don't understand, Isn't alissa a teenager? When you say that you only >have one person you trust to watch her, why is that? As Zachary gets >older, >my criteria for baby sitters has changed. Now that he's old enough to >voice >his opinions, I am not as pickey. I use a teenager from the neighborhood >that's great at playing w/Zach. I wouldn't ever use him if we had an >infant.....Alissa should be old enough to let a sitter know when she needs >treatments such as inhaler etc. And you don't have to go 100 miles away. >Tom and I only go out in our " town " +/- 3 miles away if we use a teenager, >but if we swap w/an adult, we'll go into Atlanta 20 miles. > Trust Alissa, it's her illness, not yours. She's the one that's going to >have to live her whole life with it, you want her to be able to function on >her own, and the only way she'll learn is if you allow her to do so >now....I >know that these words are so easily written, but very difficult to " do " . I >am constantly trying to allow Zach to be in control of his illness, and the >hardest part is for me is when he decides to eat a certain food that he >knows will make him sick....he says I know it'll make me sick, but I still >want it, so he eats it....mind you he doesn't do it very often, but on >occassion he does......But how else will he learn? I'm not going to follow >him to college..... >Best of luck, > >Wife to Tom, Mom to 7 yr Zach, ???(don't know the specific type) PID, GERD, >chronic sinusitis, IVIG > > > > > >At 06:34 AM 11/16/99 MST, you wrote: > > > > > >Dear : It is funny everything that you have stated is what the > >sociologist suggested so sunday, we will leave alissa with my dad and we > >will go out somewhere. I will let you know what happens, we are in >Arizona > >and the only sitter we really trust is my boss who also has an immune > >compromised daughter also. She has watched alissa a couple of times. But > >she is always on shift at urgent care. We are going to try and work out >alot > >but it just gets old after so many years of it!!!!!!1 thanks for sharing, > >annette and alissa > > > > > >> > >>Reply-To: PedPIDonelist > >>To: PedPIDonelist > >>Subject: Re: husband's help > >>Date: Mon, 15 Nov 1999 11:00:46 -0500 > >> > >>Annette, > >> > >>I'm sure that things are pretty deep with you and your husband. Having >and > >>ill child is definately a strain on a relationship. Tom and I say that >if > >>we make it through this, we'll make it through anything. Let me tell >you > >>there are many things that we do to help keep ourselves sane. Yes, we >used > >>to fight about the chores, that's why we decided to hire in help. I > >>realize > >>that financially this could be difficult, but let me tell you, it is >worth > >>every penny! Adjust you budget to try to fit this in.... It has reduced >my > >>stress level and Tom & I argue much less. It's only $40 per week, she > >>mops, > >>vacuums, dusts, cleans bathrooms, scrubs the kitchen(stove, microwave >etc), > >>and changes the sheets. She gets it all done in a couple of hours then > >>it's > >>done! then once a week, Tom & I both go through & touch up...vacuuming, > >>mopping, laundry.... > >>we joke & say that our help has been a marriage saver....but it truely >has > >>contributed alot! > >>Another thing I do is get away alone! This is also very important. You > >>need time away to do nothing, worry about nothing, and to argue about > >>nothing.....We're fortunate that we have a beach house that I can run >away > >>to, but you don't have to go out of town.....find a friend that you can > >>stay > >>overnight with, or find a cheap hotel, or If you're in NY(aren't you?) > >>the > >>state parks have really nice cabins that rent for like 20 or so a > >>night.....this way, while you're gone, you'll refresh yourself and >believe > >>it or not, your family will appreciate you much more when you > >>return....you'll get a little respect....it doesn't last forever, but it > >>gives you the necessary boost to keep moving in a positive direction. > >>And give this to your husband too. Many times we wives are needy cuz we > >>are > >>left to do it by ourselves alot....but where are >they???...working....it's > >>not exactly fun for them.... > >>And lastly.....make time for each other! Have a " date " at least once a > >>month, better yet, twice. Find someone you can " swap kids with " , most > >>churches have babbysitting co-ops. And if you cannot afford dinner, > >>realize > >>that out doesn't have to cost money. You can go hiking, stolling >through > >>the city, to a museum (most have a " free " day), go for a long country >drive > >> & > >>have a picnic.....refresh your relationship. Make your husband know >that > >>he > >>counts in your life.... > >>Tom knows that I love Zach soooo much, he says, I love you and Zach > >>equally, > >> & I know you love him more than me but I'm OK with that. And it is so >true, > >>that bond I have with my child is so strong, I don't ove Tom less, just > >>differently. > >> > >>Annette, I hope that you can work things out. I believe that marriage >is > >>forever. It's a very difficult struggle, but it can work. > >> I'll pray for you two, > >> > >> > >> > >>------------------------------------------------------------------------ > >>This forum is open to parents and caregivers of children diagnosed with >a > >>Primary Immune Deficiency. Opinions or medical advice stated here are >the > >>sole responsibility of the poster and should not be taken as >professional > >>advice. > >><< text3.html >> > > > >>This forum is open to parents and caregivers of children diagnosed with >a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. > > > > >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 Annette, I don't understand, Isn't alissa a teenager? When you say that you only have one person you trust to watch her, why is that? As Zachary gets older, my criteria for baby sitters has changed. Now that he's old enough to voice his opinions, I am not as pickey. I use a teenager from the neighborhood that's great at playing w/Zach. I wouldn't ever use him if we had an infant.....Alissa should be old enough to let a sitter know when she needs treatments such as inhaler etc. And you don't have to go 100 miles away. Tom and I only go out in our " town " +/- 3 miles away if we use a teenager, but if we swap w/an adult, we'll go into Atlanta 20 miles. Trust Alissa, it's her illness, not yours. She's the one that's going to have to live her whole life with it, you want her to be able to function on her own, and the only way she'll learn is if you allow her to do so now....I know that these words are so easily written, but very difficult to " do " . I am constantly trying to allow Zach to be in control of his illness, and the hardest part is for me is when he decides to eat a certain food that he knows will make him sick....he says I know it'll make me sick, but I still want it, so he eats it....mind you he doesn't do it very often, but on occassion he does......But how else will he learn? I'm not going to follow him to college..... Best of luck, Wife to Tom, Mom to 7 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG At 06:34 AM 11/16/99 MST, you wrote: > > >Dear : It is funny everything that you have stated is what the >sociologist suggested so sunday, we will leave alissa with my dad and we >will go out somewhere. I will let you know what happens, we are in Arizona >and the only sitter we really trust is my boss who also has an immune >compromised daughter also. She has watched alissa a couple of times. But >she is always on shift at urgent care. We are going to try and work out alot >but it just gets old after so many years of it!!!!!!1 thanks for sharing, >annette and alissa > > >> >>Reply-To: PedPIDonelist >>To: PedPIDonelist >>Subject: Re: husband's help >>Date: Mon, 15 Nov 1999 11:00:46 -0500 >> >>Annette, >> >>I'm sure that things are pretty deep with you and your husband. Having and >>ill child is definately a strain on a relationship. Tom and I say that if >>we make it through this, we'll make it through anything. Let me tell you >>there are many things that we do to help keep ourselves sane. Yes, we used >>to fight about the chores, that's why we decided to hire in help. I >>realize >>that financially this could be difficult, but let me tell you, it is worth >>every penny! Adjust you budget to try to fit this in.... It has reduced my >>stress level and Tom & I argue much less. It's only $40 per week, she >>mops, >>vacuums, dusts, cleans bathrooms, scrubs the kitchen(stove, microwave etc), >>and changes the sheets. She gets it all done in a couple of hours then >>it's >>done! then once a week, Tom & I both go through & touch up...vacuuming, >>mopping, laundry.... >>we joke & say that our help has been a marriage saver....but it truely has >>contributed alot! >>Another thing I do is get away alone! This is also very important. You >>need time away to do nothing, worry about nothing, and to argue about >>nothing.....We're fortunate that we have a beach house that I can run away >>to, but you don't have to go out of town.....find a friend that you can >>stay >>overnight with, or find a cheap hotel, or If you're in NY(aren't you?) >>the >>state parks have really nice cabins that rent for like 20 or so a >>night.....this way, while you're gone, you'll refresh yourself and believe >>it or not, your family will appreciate you much more when you >>return....you'll get a little respect....it doesn't last forever, but it >>gives you the necessary boost to keep moving in a positive direction. >>And give this to your husband too. Many times we wives are needy cuz we >>are >>left to do it by ourselves alot....but where are they???...working....it's >>not exactly fun for them.... >>And lastly.....make time for each other! Have a " date " at least once a >>month, better yet, twice. Find someone you can " swap kids with " , most >>churches have babbysitting co-ops. And if you cannot afford dinner, >>realize >>that out doesn't have to cost money. You can go hiking, stolling through >>the city, to a museum (most have a " free " day), go for a long country drive >> & >>have a picnic.....refresh your relationship. Make your husband know that >>he >>counts in your life.... >>Tom knows that I love Zach soooo much, he says, I love you and Zach >>equally, >> & I know you love him more than me but I'm OK with that. And it is so true, >>that bond I have with my child is so strong, I don't ove Tom less, just >>differently. >> >>Annette, I hope that you can work things out. I believe that marriage is >>forever. It's a very difficult struggle, but it can work. >> I'll pray for you two, >> >> >> >>------------------------------------------------------------------------ >>This forum is open to parents and caregivers of children diagnosed with a >>Primary Immune Deficiency. Opinions or medical advice stated here are the >>sole responsibility of the poster and should not be taken as professional >>advice. >><< text3.html >> > >>This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 : Don't be sorry, I will take your advice and let you know what goes on, thanks again, annette and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: husband's help >Date: Tue, 16 Nov 1999 11:29:37 -0500 > >Annette, > >Sorry, I see now that this is much more complicated than just " letting go " . >You're dealing with many issues simotaneously. I'll say some extra prayers >for you. >I wish you and you husband a fun and special rondevouis!!!!! > >Wife to Tom, Mom to 7 yr Zach, ???(don't know the specific type) PID, GERD, >chronic sinusitis, IVIG > > > > > > >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 Annette, Sorry, I see now that this is much more complicated than just " letting go " . You're dealing with many issues simotaneously. I'll say some extra prayers for you. I wish you and you husband a fun and special rondevouis!!!!! Wife to Tom, Mom to 7 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 1999 Report Share Posted November 16, 1999 : Be glad yours is a boy! Have a good evening, take care, annette and bob and alissa > >Reply-To: PedPIDonelist >To: PedPIDonelist >Subject: Re: husband's help >Date: Tue, 16 Nov 1999 20:00:54 -0500 > >Annette, > >I am sorry though, I was speaking out of my league. I don't have a >teenager >yet and I have absolutely no idea about them... it's kind of like the lady >w/no children telling you how to raise children....I wasn't even thinkig of >all the mental & psychological & HORMONAL factors. Hopefully you'll be >there to coach me when Zach's a teenager. > >Wife to Tom, Mom to 7 yr Zach, ???(don't know the specific type) PID, GERD, >chronic sinusitis, IVIG > > >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
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