My CF sister...

fondreflections

New member
<b>I hope that parents that are so in favor of having multiple children while knowing the odds of CF are paying attention. This could be your children's lives someday...</b>

If I sound bitter, maybe I am. And I have every reason to be...No apologies from me...

As most of you know, my sister, Jess, who also has CF had her first hospital admission in January since she was 9-years-old. She was always the milder one out of the two of us. To everyone's surprise, her FEV1 was 38%. Well after 3 weeks of IVs, her FEV1 jumped back up to 73%. I'm currently at 70%, 26-years-old. I have been between 68-70% for the past 3 years now.

Anyway, her health isn't looking too good again...My parents had her and her husband over last Sunday and noticed her weight is slipping again. Also, she looked 'very tired'. As if that isn't enough, her husband was just diagnosed with Chron's (sp?). He is now on disablity and has to have 7-8 inches of his colon removed. He will be on steriods for the rest of his life...He is currently living on pudding, yogert, and liquids. This was the last thing on Earth that they needed.

My CF doctor has STRESSED to stay far away from her...She is a HUGE threat to me. It's so hard...Moreso with everything going on in her life right now. I could just cry. We were never the closest; however, as I'm getting older with CF I realize how precious each and every moment is. Moreso, I'm watching her melt away (from a distance).

I have had MRSA for over 5 years now, and thankfully, it hasn't affected me. However, I would NEVER forgive myself if I passed it onto her. That would really be the last thing she would need...Thankfully, she doesn't have it. I make every effort not to infect her with it.

My CF doctor still says that she is a HIGHER risk to me than I am to her.

I AM SO SICK OF THIS DISEASE!!! I can't be there for her. I am the older sibling, and my hands are tied behind my back. **** this diease. The thought of watching her wither away from a distance and stand at a coffin to deliver a eulogy (sp?) ticks me off! No, it disgusts me!

This disease has affected my family so badly. I WISH I had a 'normal family' unaffected by CF. She has a sibling that could most relate to her, and yet she can't even get a hug...B***S***!!!

Thank you for letting me vent. I really don't talk about these feelings. I just store them until I can't hold back any longer. <img src="i/expressions/heart.gif" border="0">

This is my outlet.
 

fondreflections

New member
<b>I hope that parents that are so in favor of having multiple children while knowing the odds of CF are paying attention. This could be your children's lives someday...</b>

If I sound bitter, maybe I am. And I have every reason to be...No apologies from me...

As most of you know, my sister, Jess, who also has CF had her first hospital admission in January since she was 9-years-old. She was always the milder one out of the two of us. To everyone's surprise, her FEV1 was 38%. Well after 3 weeks of IVs, her FEV1 jumped back up to 73%. I'm currently at 70%, 26-years-old. I have been between 68-70% for the past 3 years now.

Anyway, her health isn't looking too good again...My parents had her and her husband over last Sunday and noticed her weight is slipping again. Also, she looked 'very tired'. As if that isn't enough, her husband was just diagnosed with Chron's (sp?). He is now on disablity and has to have 7-8 inches of his colon removed. He will be on steriods for the rest of his life...He is currently living on pudding, yogert, and liquids. This was the last thing on Earth that they needed.

My CF doctor has STRESSED to stay far away from her...She is a HUGE threat to me. It's so hard...Moreso with everything going on in her life right now. I could just cry. We were never the closest; however, as I'm getting older with CF I realize how precious each and every moment is. Moreso, I'm watching her melt away (from a distance).

I have had MRSA for over 5 years now, and thankfully, it hasn't affected me. However, I would NEVER forgive myself if I passed it onto her. That would really be the last thing she would need...Thankfully, she doesn't have it. I make every effort not to infect her with it.

My CF doctor still says that she is a HIGHER risk to me than I am to her.

I AM SO SICK OF THIS DISEASE!!! I can't be there for her. I am the older sibling, and my hands are tied behind my back. **** this diease. The thought of watching her wither away from a distance and stand at a coffin to deliver a eulogy (sp?) ticks me off! No, it disgusts me!

This disease has affected my family so badly. I WISH I had a 'normal family' unaffected by CF. She has a sibling that could most relate to her, and yet she can't even get a hug...B***S***!!!

Thank you for letting me vent. I really don't talk about these feelings. I just store them until I can't hold back any longer. <img src="i/expressions/heart.gif" border="0">

This is my outlet.
 

fondreflections

New member
<b>I hope that parents that are so in favor of having multiple children while knowing the odds of CF are paying attention. This could be your children's lives someday...</b>

If I sound bitter, maybe I am. And I have every reason to be...No apologies from me...

As most of you know, my sister, Jess, who also has CF had her first hospital admission in January since she was 9-years-old. She was always the milder one out of the two of us. To everyone's surprise, her FEV1 was 38%. Well after 3 weeks of IVs, her FEV1 jumped back up to 73%. I'm currently at 70%, 26-years-old. I have been between 68-70% for the past 3 years now.

Anyway, her health isn't looking too good again...My parents had her and her husband over last Sunday and noticed her weight is slipping again. Also, she looked 'very tired'. As if that isn't enough, her husband was just diagnosed with Chron's (sp?). He is now on disablity and has to have 7-8 inches of his colon removed. He will be on steriods for the rest of his life...He is currently living on pudding, yogert, and liquids. This was the last thing on Earth that they needed.

My CF doctor has STRESSED to stay far away from her...She is a HUGE threat to me. It's so hard...Moreso with everything going on in her life right now. I could just cry. We were never the closest; however, as I'm getting older with CF I realize how precious each and every moment is. Moreso, I'm watching her melt away (from a distance).

I have had MRSA for over 5 years now, and thankfully, it hasn't affected me. However, I would NEVER forgive myself if I passed it onto her. That would really be the last thing she would need...Thankfully, she doesn't have it. I make every effort not to infect her with it.

My CF doctor still says that she is a HIGHER risk to me than I am to her.

I AM SO SICK OF THIS DISEASE!!! I can't be there for her. I am the older sibling, and my hands are tied behind my back. **** this diease. The thought of watching her wither away from a distance and stand at a coffin to deliver a eulogy (sp?) ticks me off! No, it disgusts me!

This disease has affected my family so badly. I WISH I had a 'normal family' unaffected by CF. She has a sibling that could most relate to her, and yet she can't even get a hug...B***S***!!!

Thank you for letting me vent. I really don't talk about these feelings. I just store them until I can't hold back any longer. <img src="i/expressions/heart.gif" border="0">

This is my outlet.
 

fondreflections

New member
<b>I hope that parents that are so in favor of having multiple children while knowing the odds of CF are paying attention. This could be your children's lives someday...</b>

If I sound bitter, maybe I am. And I have every reason to be...No apologies from me...

As most of you know, my sister, Jess, who also has CF had her first hospital admission in January since she was 9-years-old. She was always the milder one out of the two of us. To everyone's surprise, her FEV1 was 38%. Well after 3 weeks of IVs, her FEV1 jumped back up to 73%. I'm currently at 70%, 26-years-old. I have been between 68-70% for the past 3 years now.

Anyway, her health isn't looking too good again...My parents had her and her husband over last Sunday and noticed her weight is slipping again. Also, she looked 'very tired'. As if that isn't enough, her husband was just diagnosed with Chron's (sp?). He is now on disablity and has to have 7-8 inches of his colon removed. He will be on steriods for the rest of his life...He is currently living on pudding, yogert, and liquids. This was the last thing on Earth that they needed.

My CF doctor has STRESSED to stay far away from her...She is a HUGE threat to me. It's so hard...Moreso with everything going on in her life right now. I could just cry. We were never the closest; however, as I'm getting older with CF I realize how precious each and every moment is. Moreso, I'm watching her melt away (from a distance).

I have had MRSA for over 5 years now, and thankfully, it hasn't affected me. However, I would NEVER forgive myself if I passed it onto her. That would really be the last thing she would need...Thankfully, she doesn't have it. I make every effort not to infect her with it.

My CF doctor still says that she is a HIGHER risk to me than I am to her.

I AM SO SICK OF THIS DISEASE!!! I can't be there for her. I am the older sibling, and my hands are tied behind my back. **** this diease. The thought of watching her wither away from a distance and stand at a coffin to deliver a eulogy (sp?) ticks me off! No, it disgusts me!

This disease has affected my family so badly. I WISH I had a 'normal family' unaffected by CF. She has a sibling that could most relate to her, and yet she can't even get a hug...B***S***!!!

Thank you for letting me vent. I really don't talk about these feelings. I just store them until I can't hold back any longer. <img src="i/expressions/heart.gif" border="0">

This is my outlet.
 

fondreflections

New member
<b>I hope that parents that are so in favor of having multiple children while knowing the odds of CF are paying attention. This could be your children's lives someday...</b>
<br />
<br />If I sound bitter, maybe I am. And I have every reason to be...No apologies from me...
<br />
<br />As most of you know, my sister, Jess, who also has CF had her first hospital admission in January since she was 9-years-old. She was always the milder one out of the two of us. To everyone's surprise, her FEV1 was 38%. Well after 3 weeks of IVs, her FEV1 jumped back up to 73%. I'm currently at 70%, 26-years-old. I have been between 68-70% for the past 3 years now.
<br />
<br />Anyway, her health isn't looking too good again...My parents had her and her husband over last Sunday and noticed her weight is slipping again. Also, she looked 'very tired'. As if that isn't enough, her husband was just diagnosed with Chron's (sp?). He is now on disablity and has to have 7-8 inches of his colon removed. He will be on steriods for the rest of his life...He is currently living on pudding, yogert, and liquids. This was the last thing on Earth that they needed.
<br />
<br />My CF doctor has STRESSED to stay far away from her...She is a HUGE threat to me. It's so hard...Moreso with everything going on in her life right now. I could just cry. We were never the closest; however, as I'm getting older with CF I realize how precious each and every moment is. Moreso, I'm watching her melt away (from a distance).
<br />
<br />I have had MRSA for over 5 years now, and thankfully, it hasn't affected me. However, I would NEVER forgive myself if I passed it onto her. That would really be the last thing she would need...Thankfully, she doesn't have it. I make every effort not to infect her with it.
<br />
<br />My CF doctor still says that she is a HIGHER risk to me than I am to her.
<br />
<br />I AM SO SICK OF THIS DISEASE!!! I can't be there for her. I am the older sibling, and my hands are tied behind my back. **** this diease. The thought of watching her wither away from a distance and stand at a coffin to deliver a eulogy (sp?) ticks me off! No, it disgusts me!
<br />
<br />This disease has affected my family so badly. I WISH I had a 'normal family' unaffected by CF. She has a sibling that could most relate to her, and yet she can't even get a hug...B***S***!!!
<br />
<br />Thank you for letting me vent. I really don't talk about these feelings. I just store them until I can't hold back any longer. <img src="i/expressions/heart.gif" border="0">
<br />
<br />This is my outlet.
 

JazzysMom

New member
OH Sweety!

I am so sorry! I dont have a sibling with CF so I cant completely understand. I actually cant imagine not being able to hug one of my bros/sis' when they are having a rough time or just because I want to.

It would devistate me as he is you.

I have no words to help you except that CF F*CKING SUCKS & I am sending a buttload of HUGS your way!
 

JazzysMom

New member
OH Sweety!

I am so sorry! I dont have a sibling with CF so I cant completely understand. I actually cant imagine not being able to hug one of my bros/sis' when they are having a rough time or just because I want to.

It would devistate me as he is you.

I have no words to help you except that CF F*CKING SUCKS & I am sending a buttload of HUGS your way!
 

JazzysMom

New member
OH Sweety!

I am so sorry! I dont have a sibling with CF so I cant completely understand. I actually cant imagine not being able to hug one of my bros/sis' when they are having a rough time or just because I want to.

It would devistate me as he is you.

I have no words to help you except that CF F*CKING SUCKS & I am sending a buttload of HUGS your way!
 

JazzysMom

New member
OH Sweety!

I am so sorry! I dont have a sibling with CF so I cant completely understand. I actually cant imagine not being able to hug one of my bros/sis' when they are having a rough time or just because I want to.

It would devistate me as he is you.

I have no words to help you except that CF F*CKING SUCKS & I am sending a buttload of HUGS your way!
 

JazzysMom

New member
OH Sweety!
<br />
<br />I am so sorry! I dont have a sibling with CF so I cant completely understand. I actually cant imagine not being able to hug one of my bros/sis' when they are having a rough time or just because I want to.
<br />
<br />It would devistate me as he is you.
<br />
<br />I have no words to help you except that CF F*CKING SUCKS & I am sending a buttload of HUGS your way!
 

rubyroselee

New member
Hi Jenny,

I am sooo sorry that you feel like this right now. I also cannot relate because my brother doesn't have CF (although a carrier). It would be extremely hard for me though to watch my brother have the same disease as me. I can't even imagine what it would be like. It must be especially hard because you can't be physically close to one another for fear of passing something to each other. That is always the hardest part of this disease I think.

I just wanted to tell you that I hope your sister starts feeling better soon. Try your best to be her support but in a safe way for both of you. Talk to her lots on the phone and hopefully you both can get some feelings out about how this disease is affecting you guys emotionally. I wish you both the best.

**Hugs**
 

rubyroselee

New member
Hi Jenny,

I am sooo sorry that you feel like this right now. I also cannot relate because my brother doesn't have CF (although a carrier). It would be extremely hard for me though to watch my brother have the same disease as me. I can't even imagine what it would be like. It must be especially hard because you can't be physically close to one another for fear of passing something to each other. That is always the hardest part of this disease I think.

I just wanted to tell you that I hope your sister starts feeling better soon. Try your best to be her support but in a safe way for both of you. Talk to her lots on the phone and hopefully you both can get some feelings out about how this disease is affecting you guys emotionally. I wish you both the best.

**Hugs**
 

rubyroselee

New member
Hi Jenny,

I am sooo sorry that you feel like this right now. I also cannot relate because my brother doesn't have CF (although a carrier). It would be extremely hard for me though to watch my brother have the same disease as me. I can't even imagine what it would be like. It must be especially hard because you can't be physically close to one another for fear of passing something to each other. That is always the hardest part of this disease I think.

I just wanted to tell you that I hope your sister starts feeling better soon. Try your best to be her support but in a safe way for both of you. Talk to her lots on the phone and hopefully you both can get some feelings out about how this disease is affecting you guys emotionally. I wish you both the best.

**Hugs**
 

rubyroselee

New member
Hi Jenny,

I am sooo sorry that you feel like this right now. I also cannot relate because my brother doesn't have CF (although a carrier). It would be extremely hard for me though to watch my brother have the same disease as me. I can't even imagine what it would be like. It must be especially hard because you can't be physically close to one another for fear of passing something to each other. That is always the hardest part of this disease I think.

I just wanted to tell you that I hope your sister starts feeling better soon. Try your best to be her support but in a safe way for both of you. Talk to her lots on the phone and hopefully you both can get some feelings out about how this disease is affecting you guys emotionally. I wish you both the best.

**Hugs**
 

rubyroselee

New member
Hi Jenny,
<br />
<br />I am sooo sorry that you feel like this right now. I also cannot relate because my brother doesn't have CF (although a carrier). It would be extremely hard for me though to watch my brother have the same disease as me. I can't even imagine what it would be like. It must be especially hard because you can't be physically close to one another for fear of passing something to each other. That is always the hardest part of this disease I think.
<br />
<br />I just wanted to tell you that I hope your sister starts feeling better soon. Try your best to be her support but in a safe way for both of you. Talk to her lots on the phone and hopefully you both can get some feelings out about how this disease is affecting you guys emotionally. I wish you both the best.
<br />
<br />**Hugs**
 
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