Just Wondering

[kmhbeauty]

Well I am a firm believer that doctors help us out a lot but we have the disease and we know our body the best! I think this website is awesome because it helps us compare notes with each other. Just wondering if there is anyone else out there like me. Here is my story....... I am a 26 year old female, dx at 15. Fevs always around 80-83%. I rebelled against doctor treatment for a long time. Have never taken any medicine besides vitamins and I eat very healthy to avoid digestive problems. I am starting to finally feel the affects of CF. I am having bad joint pain flair ups here and there. When I am sick I get out of breath quick. example: hard to walk up the stairs. I just really am not feeling that great lately. I feel like I really have to get around 10 hours of sleep a night or I start to feel sick. For some reason my lungs have been super dry lately, bad dry. But just seeing if there is anyone who has not taken any CF medicine and is not starting to feel some of the effects of this disease.I would not say I am perfect because I have not taken the cf medicine but I handle my disease the way I feel helps me the most. The medicine that I'm supposed to do is vest, saline, and enzymes. The enzymes I am now making an effort to take and I actually really think the vest helps but I do not enjoy it or have time to do it.

 

[kmhbeauty]

Well I am a firm believer that doctors help us out a lot but we have the disease and we know our body the best! I think this website is awesome because it helps us compare notes with each other. Just wondering if there is anyone else out there like me. Here is my story....... I am a 26 year old female, dx at 15. Fevs always around 80-83%. I rebelled against doctor treatment for a long time. Have never taken any medicine besides vitamins and I eat very healthy to avoid digestive problems. I am starting to finally feel the affects of CF. I am having bad joint pain flair ups here and there. When I am sick I get out of breath quick. example: hard to walk up the stairs. I just really am not feeling that great lately. I feel like I really have to get around 10 hours of sleep a night or I start to feel sick. For some reason my lungs have been super dry lately, bad dry. But just seeing if there is anyone who has not taken any CF medicine and is not starting to feel some of the effects of this disease.I would not say I am perfect because I have not taken the cf medicine but I handle my disease the way I feel helps me the most. The medicine that I'm supposed to do is vest, saline, and enzymes. The enzymes I am now making an effort to take and I actually really think the vest helps but I do not enjoy it or have time to do it.

 

[gunelle]

Hi, I am a late diagnosis also, diagnosed at 32 (currently 35), and I did get ill due to not being diasnosed and going without treatment for so long. I had reacurring pneumonia and have developed bronquiectasia, which I think is due to not taking the right medication, I don't know if it would have prevented developing bronquiectasia but it's something to think about. I know how you feel about not accepting that you have to take medication, but believe me it gets easier over time, my first reaction to all the medication I had to take (my treatments consists of saline, pulmozyne and promixin. Plus flutter and fysio), was no I am not going to do this. But gradually the treatments became part of my daily rutine and are now just a part of my life. In the mornings I take saline and promixin while getting ready in the bathroom. In the evenings I relax after a long day in front of the TV. Moreover I have good equipment -the E-flow rapid and the I-neb, which reduced my treatment time immensely.

I would strongly recommend you to take your medication, it improves your quality of life and reduces the damages that the bacterias cause to your lungs.

Take care

G.

 

[gunelle]

Hi, I am a late diagnosis also, diagnosed at 32 (currently 35), and I did get ill due to not being diasnosed and going without treatment for so long. I had reacurring pneumonia and have developed bronquiectasia, which I think is due to not taking the right medication, I don't know if it would have prevented developing bronquiectasia but it's something to think about. I know how you feel about not accepting that you have to take medication, but believe me it gets easier over time, my first reaction to all the medication I had to take (my treatments consists of saline, pulmozyne and promixin. Plus flutter and fysio), was no I am not going to do this. But gradually the treatments became part of my daily rutine and are now just a part of my life. In the mornings I take saline and promixin while getting ready in the bathroom. In the evenings I relax after a long day in front of the TV. Moreover I have good equipment -the E-flow rapid and the I-neb, which reduced my treatment time immensely.

I would strongly recommend you to take your medication, it improves your quality of life and reduces the damages that the bacterias cause to your lungs.

Take care

G.

 

[beleache]

Hi,
I am wondering , Have you been to your clinic ?? If you have, what are your drs. saying ?
Many Cfers have joint pain. Do they know you are having these symptoms ? They will probably send you to a Rheumatologist, you may want to get yourself checked out so that they may be able to help you out with your pain..
Also, Cfers have a progression of the disease that can change very subtly or rapidly.
Are you using the saline in your neb ? I'm surprised that that is the only medicine they have you using. No albuterol ?
If you are very dry, you are probably not drinking enough water. I know if I dont drink 6-8 glasses of water, I get dry & its hard to get things moving ..
Hope you feel better soon ! <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[beleache]

Hi,
I am wondering , Have you been to your clinic ?? If you have, what are your drs. saying ?
Many Cfers have joint pain. Do they know you are having these symptoms ? They will probably send you to a Rheumatologist, you may want to get yourself checked out so that they may be able to help you out with your pain..
Also, Cfers have a progression of the disease that can change very subtly or rapidly.
Are you using the saline in your neb ? I'm surprised that that is the only medicine they have you using. No albuterol ?
If you are very dry, you are probably not drinking enough water. I know if I dont drink 6-8 glasses of water, I get dry & its hard to get things moving ..
Hope you feel better soon ! <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[kmhbeauty]

Thank you for the great advice! Yes about 3-4 years ago I would only go to clinic twice a year but now I am going when I should which is once every three months. They have me on albuterol but I have notice it does nothing to help me at all. I called them the other day on the joint pain and they just told me to take pain medicine. I am going to have to go down there and tell them I need something more because I cant stay in bed for 3 days in pain. Im am going to try drinking some more water. Its weird because I have never had my lungs be this dry before. They are so dry that I cant catch my breath when im caughing and then it sounds like weasing.

 

[kmhbeauty]

Thank you for the great advice! Yes about 3-4 years ago I would only go to clinic twice a year but now I am going when I should which is once every three months. They have me on albuterol but I have notice it does nothing to help me at all. I called them the other day on the joint pain and they just told me to take pain medicine. I am going to have to go down there and tell them I need something more because I cant stay in bed for 3 days in pain. Im am going to try drinking some more water. Its weird because I have never had my lungs be this dry before. They are so dry that I cant catch my breath when im caughing and then it sounds like weasing.