My rant

[MattNAdriannasMommy]

I was diagnosed at 13 and I am 21 now. When I was diagnosed my Fev1 was around 100 and I was a full time dancer. At 16 I got pregnant and I stopped dancing and thats when I started sliding backwards. <div><br></div><div>Fastforward......</div><div><br></div><div>I have been married 3 years. I have a 5yo son and 2yo daughter. My Fev1 is somewhere in the 50's I believe. </div><div><br></div><div>CF, or just the thought of has become draining. I have a vest- don't use it. It makes me feel absolutely horrible and I just don't feel a positive difference. I stopped taking basically all my meds except for enzymes because mostly of how they make me feel. </div><div><br></div><div>I feel lazy all the time. I feel out of shape. I am working on a degree in nursing (women's health), but sometimes I wonder if its really worth getting the degree because I don't know how long I will physically be able to nurse. </div><div><br></div><div>I think the psychology is getting to me the most. I think about how my life would be different without CF. I think about what I have accomplished and am in progressing on doing and how great I would be if I didn't have CF. My husband and I fight constantly because of the house and stuff that shouldn't be an issue to take care of, but I don't think he understands the idea of bad days and how crappy I feel. I just want to be able to wake up in the morning and feel good so I have the energy to do what needs to be done and spend time with my kids. </div><div><br></div><div>I need a cure to this madness like yesterday, but I think we all need that. I feel like I am sounding selfish, but Im not sure where else to turn. Most of the time it falls back to "I don't take care of myself" </div><div><br></div><div>Any word of advise or things to help you feel better or natural methods that have worked?</div><div><br></div><div>-Amber 21/CF</div>

 

[MattNAdriannasMommy]

I was diagnosed at 13 and I am 21 now. When I was diagnosed my Fev1 was around 100 and I was a full time dancer. At 16 I got pregnant and I stopped dancing and thats when I started sliding backwards.<br>Fastforward......<br>I have been married 3 years. I have a 5yo son and 2yo daughter. My Fev1 is somewhere in the 50's I believe.<br>CF, or just the thought of has become draining. I have a vest- don't use it. It makes me feel absolutely horrible and I just don't feel a positive difference. I stopped taking basically all my meds except for enzymes because mostly of how they make me feel.<br>I feel lazy all the time. I feel out of shape. I am working on a degree in nursing (women's health), but sometimes I wonder if its really worth getting the degree because I don't know how long I will physically be able to nurse.<br>I think the psychology is getting to me the most. I think about how my life would be different without CF. I think about what I have accomplished and am in progressing on doing and how great I would be if I didn't have CF. My husband and I fight constantly because of the house and stuff that shouldn't be an issue to take care of, but I don't think he understands the idea of bad days and how crappy I feel. I just want to be able to wake up in the morning and feel good so I have the energy to do what needs to be done and spend time with my kids.<br>I need a cure to this madness like yesterday, but I think we all need that. I feel like I am sounding selfish, but Im not sure where else to turn. Most of the time it falls back to "I don't take care of myself"<br>Any word of advise or things to help you feel better or natural methods that have worked?<br>-Amber 21/CF

 

[MattNAdriannasMommy]

I was diagnosed at 13 and I am 21 now. When I was diagnosed my Fev1 was around 100 and I was a full time dancer. At 16 I got pregnant and I stopped dancing and thats when I started sliding backwards.<br>Fastforward......<br>I have been married 3 years. I have a 5yo son and 2yo daughter. My Fev1 is somewhere in the 50's I believe.<br>CF, or just the thought of has become draining. I have a vest- don't use it. It makes me feel absolutely horrible and I just don't feel a positive difference. I stopped taking basically all my meds except for enzymes because mostly of how they make me feel.<br>I feel lazy all the time. I feel out of shape. I am working on a degree in nursing (women's health), but sometimes I wonder if its really worth getting the degree because I don't know how long I will physically be able to nurse.<br>I think the psychology is getting to me the most. I think about how my life would be different without CF. I think about what I have accomplished and am in progressing on doing and how great I would be if I didn't have CF. My husband and I fight constantly because of the house and stuff that shouldn't be an issue to take care of, but I don't think he understands the idea of bad days and how crappy I feel. I just want to be able to wake up in the morning and feel good so I have the energy to do what needs to be done and spend time with my kids.<br>I need a cure to this madness like yesterday, but I think we all need that. I feel like I am sounding selfish, but Im not sure where else to turn. Most of the time it falls back to "I don't take care of myself"<br>Any word of advise or things to help you feel better or natural methods that have worked?<br>-Amber 21/CF

 

[azdesertrat]

Nothing personal young lady but I think you should seriously consider therapy. It appears the path you are on is if not self-destructive than at least not very good for you or your children. Please, do something to remove yourself from what I perceive is a huge rut. I hope you'll do something to right yourself. If there is something I can do to help, please don't hesitate to contact me!

 

[azdesertrat]

Nothing personal young lady but I think you should seriously consider therapy. It appears the path you are on is if not self-destructive than at least not very good for you or your children. Please, do something to remove yourself from what I perceive is a huge rut. I hope you'll do something to right yourself. If there is something I can do to help, please don't hesitate to contact me!

 

[azdesertrat]

Nothing personal young lady but I think you should seriously consider therapy. It appears the path you are on is if not self-destructive than at least not very good for you or your children. Please, do something to remove yourself from what I perceive is a huge rut. I hope you'll do something to right yourself. If there is something I can do to help, please don't hesitate to contact me!

 

[MattNAdriannasMommy]

My biggest problem is finding a treatment that works for me. Im not against it. My Dr is pretty open minded, which helps, but we are military, so she can't really say much about holistic methods or whatnot. Heres the rundown on my meds....

Prenatals and Vitamax
azithromycin (m/w/f)
Cayston (Im highly sensitive to inhaled Tobi, but downside is Cayston is 3x day and it makes me cough horribly- more like can't breath, gasping for breath rather than productive cough)
zyrtec
marinol
nexium
pulmozyme
zenpep

I know something isn't right because they just don't make me feel any better. I feel better when I do non (except enzyme because I would rather not bother with the stomach issues)

I have looked into holistic methods, but am not sure where to take it. I mentioned I hate my vest. When I was younger and danced I could get away with not doing it because I was getting so much exercise (I was 20lbs heavier too) I think I am going to try to get into walking/running. Maybe try to get myself into a dance class at some point.

Over all, I would love to have one more baby. Its not something I will let happen if I know going into it that it will seriously hurt my health.

 

[MattNAdriannasMommy]

My biggest problem is finding a treatment that works for me. Im not against it. My Dr is pretty open minded, which helps, but we are military, so she can't really say much about holistic methods or whatnot. Heres the rundown on my meds....

Prenatals and Vitamax
azithromycin (m/w/f)
Cayston (Im highly sensitive to inhaled Tobi, but downside is Cayston is 3x day and it makes me cough horribly- more like can't breath, gasping for breath rather than productive cough)
zyrtec
marinol
nexium
pulmozyme
zenpep

I know something isn't right because they just don't make me feel any better. I feel better when I do non (except enzyme because I would rather not bother with the stomach issues)

I have looked into holistic methods, but am not sure where to take it. I mentioned I hate my vest. When I was younger and danced I could get away with not doing it because I was getting so much exercise (I was 20lbs heavier too) I think I am going to try to get into walking/running. Maybe try to get myself into a dance class at some point.

Over all, I would love to have one more baby. Its not something I will let happen if I know going into it that it will seriously hurt my health.

 

[MattNAdriannasMommy]

My biggest problem is finding a treatment that works for me. Im not against it. My Dr is pretty open minded, which helps, but we are military, so she can't really say much about holistic methods or whatnot. Heres the rundown on my meds....
<br />
<br />Prenatals and Vitamax
<br />azithromycin (m/w/f)
<br />Cayston (Im highly sensitive to inhaled Tobi, but downside is Cayston is 3x day and it makes me cough horribly- more like can't breath, gasping for breath rather than productive cough)
<br />zyrtec
<br />marinol
<br />nexium
<br />pulmozyme
<br />zenpep
<br />
<br />I know something isn't right because they just don't make me feel any better. I feel better when I do non (except enzyme because I would rather not bother with the stomach issues)
<br />
<br />I have looked into holistic methods, but am not sure where to take it. I mentioned I hate my vest. When I was younger and danced I could get away with not doing it because I was getting so much exercise (I was 20lbs heavier too) I think I am going to try to get into walking/running. Maybe try to get myself into a dance class at some point.
<br />
<br />Over all, I would love to have one more baby. Its not something I will let happen if I know going into it that it will seriously hurt my health.
<br />

 

[jessykt]

It sounds like you might benefit the most from therapy first, and then work on finding a med routine that works for you. If you don't address your pysch issues first, you'll never find the "umph" you need to get going in taking care of yourself and your family.

Remember, you need to take care of your children's mother! You can't do them a bit of good if you don't get on top of things. And with what little you shared, having another baby should probably be put on the back burner until you are in a better place emotionally...

 

[jessykt]

It sounds like you might benefit the most from therapy first, and then work on finding a med routine that works for you. If you don't address your pysch issues first, you'll never find the "umph" you need to get going in taking care of yourself and your family.

Remember, you need to take care of your children's mother! You can't do them a bit of good if you don't get on top of things. And with what little you shared, having another baby should probably be put on the back burner until you are in a better place emotionally...

 

[jessykt]

It sounds like you might benefit the most from therapy first, and then work on finding a med routine that works for you. If you don't address your pysch issues first, you'll never find the "umph" you need to get going in taking care of yourself and your family.

Remember, you need to take care of your children's mother! You can't do them a bit of good if you don't get on top of things. And with what little you shared, having another baby should probably be put on the back burner until you are in a better place emotionally...

 

[serendipity730]

Amber, I am going to third was had already been said. I think that you and your husband need to consider therapy bothtogether and individually. I have been going to therapists on and off since I was seventeen, and if you find the right person, it can be very helpful. I understand how difficult it can be to motivate yourself to be more active. I've struggled with doing regular exercise for years and beating myself up for not doing it. I've been exercising regularly for three years now and my lung function has been more stable. Regarding your other treatments, you may feel like they don't 'do anything', but they are, even if there isn't an appreciable difference. I have a friend who is my age with CF, who I have been cooresponding with for eleven years. At the beginning, we had comparable pulmonary function. However, for the last ten years, he's done very little as far as treatments to maintain his health. He now has an FEV1 of 25% and is being evaluated for a transplant. I have always stuck to my treatments and my lung function is in the low 70%'s. I am not saying that adherance to treatment was the only factor at play. I may have milder disease than him, but his non-compliance caused his lung function to continually slip to a point where they couldn't recover. Also, based on what you've said about Cayston, you might want to talk to your doctor about Albuterol. Best of luck.

 

[serendipity730]

Amber, I am going to third was had already been said. I think that you and your husband need to consider therapy bothtogether and individually. I have been going to therapists on and off since I was seventeen, and if you find the right person, it can be very helpful. I understand how difficult it can be to motivate yourself to be more active. I've struggled with doing regular exercise for years and beating myself up for not doing it. I've been exercising regularly for three years now and my lung function has been more stable. Regarding your other treatments, you may feel like they don't 'do anything', but they are, even if there isn't an appreciable difference. I have a friend who is my age with CF, who I have been cooresponding with for eleven years. At the beginning, we had comparable pulmonary function. However, for the last ten years, he's done very little as far as treatments to maintain his health. He now has an FEV1 of 25% and is being evaluated for a transplant. I have always stuck to my treatments and my lung function is in the low 70%'s. I am not saying that adherance to treatment was the only factor at play. I may have milder disease than him, but his non-compliance caused his lung function to continually slip to a point where they couldn't recover. Also, based on what you've said about Cayston, you might want to talk to your doctor about Albuterol. Best of luck.

 

[serendipity730]

Amber, I am going to third was had already been said. I think that you and your husband need to consider therapy bothtogether and individually. I have been going to therapists on and off since I was seventeen, and if you find the right person, it can be very helpful. I understand how difficult it can be to motivate yourself to be more active. I've struggled with doing regular exercise for years and beating myself up for not doing it. I've been exercising regularly for three years now and my lung function has been more stable. Regarding your other treatments, you may feel like they don't 'do anything', but they are, even if there isn't an appreciable difference. I have a friend who is my age with CF, who I have been cooresponding with for eleven years. At the beginning, we had comparable pulmonary function. However, for the last ten years, he's done very little as far as treatments to maintain his health. He now has an FEV1 of 25% and is being evaluated for a transplant. I have always stuck to my treatments and my lung function is in the low 70%'s. I am not saying that adherance to treatment was the only factor at play. I may have milder disease than him, but his non-compliance caused his lung function to continually slip to a point where they couldn't recover. Also, based on what you've said about Cayston, you might want to talk to your doctor about Albuterol. Best of luck.

 

[serendipity730]

Amber,

I am going to third was had already been said. I think that you and your husband need to consider therapy both together and individually. I have been going to therapists on and off since I was seventeen, and if you find the right person, it can be very helpful.

I understand how difficult it can be to motivate yourself to be more active. I've struggled with doing regular exercise for years and beating myself up for not doing it. I've been exercising regularly for three years now and my lung function has been more stable.

Regarding your other treatments, you may feel like they don't 'do anything', but they are, even if there isn't an appreciable difference. I have a friend who is my age with CF, who I have been cooresponding with for eleven years. At the beginning, we had comparable pulmonary function. However, for the last ten years, he's done very little as far as treatments to maintain his health. He now has an FEV1 of 25% and is being evaluated for a transplant. I have always stuck to my treatments and my lung function is in the low 70%'s. I am not saying that adherance to treatment was the only factor at play. I may have milder disease than him, but his non-compliance caused his lung function to continually slip to a point where they couldn't recover.

Also, based on what you've said about Cayston, you might want to talk to your doctor about Albuterol.

Best of luck.

 

[serendipity730]

Amber,

I am going to third was had already been said. I think that you and your husband need to consider therapy both together and individually. I have been going to therapists on and off since I was seventeen, and if you find the right person, it can be very helpful.

I understand how difficult it can be to motivate yourself to be more active. I've struggled with doing regular exercise for years and beating myself up for not doing it. I've been exercising regularly for three years now and my lung function has been more stable.

Regarding your other treatments, you may feel like they don't 'do anything', but they are, even if there isn't an appreciable difference. I have a friend who is my age with CF, who I have been cooresponding with for eleven years. At the beginning, we had comparable pulmonary function. However, for the last ten years, he's done very little as far as treatments to maintain his health. He now has an FEV1 of 25% and is being evaluated for a transplant. I have always stuck to my treatments and my lung function is in the low 70%'s. I am not saying that adherance to treatment was the only factor at play. I may have milder disease than him, but his non-compliance caused his lung function to continually slip to a point where they couldn't recover.

Also, based on what you've said about Cayston, you might want to talk to your doctor about Albuterol.

Best of luck.

 

[serendipity730]

Amber,

I am going to third was had already been said. I think that you and your husband need to consider therapy both together and individually. I have been going to therapists on and off since I was seventeen, and if you find the right person, it can be very helpful.

I understand how difficult it can be to motivate yourself to be more active. I've struggled with doing regular exercise for years and beating myself up for not doing it. I've been exercising regularly for three years now and my lung function has been more stable.

Regarding your other treatments, you may feel like they don't 'do anything', but they are, even if there isn't an appreciable difference. I have a friend who is my age with CF, who I have been cooresponding with for eleven years. At the beginning, we had comparable pulmonary function. However, for the last ten years, he's done very little as far as treatments to maintain his health. He now has an FEV1 of 25% and is being evaluated for a transplant. I have always stuck to my treatments and my lung function is in the low 70%'s. I am not saying that adherance to treatment was the only factor at play. I may have milder disease than him, but his non-compliance caused his lung function to continually slip to a point where they couldn't recover.

Also, based on what you've said about Cayston, you might want to talk to your doctor about Albuterol.

Best of luck.

 

[Jennyvb17]

I will 4th the therapist, and say maybe an antidepressant may be helpful. I need one, it makes a huge difference, and keeps me getting out of bed in the morning.

 

[Jennyvb17]

I will 4th the therapist, and say maybe an antidepressant may be helpful. I need one, it makes a huge difference, and keeps me getting out of bed in the morning.