Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 June, unfortunately Bronchiectasis is the sort of disease where you are up and down on a regular basis. It’s probably more a case of getting used to that than anything else. And the doctors haven’t been there, so they simply don’t know. I totally understand your frustrations – I’ve been there remember. Getting enough rest can be an enormous help, and although at times it may be difficult, it really is a necessity. One of the things I’ve found that helped is to have the antibiotics rotated. That is, don’t have the same ones week after week. Your system gets used to the same thing over and over, and won’t work. You could suggest that to your doctor and see what she thinks. Cheryl ========== Cheryl – http://www.cheryl-wright.com Think Outside the Square: Writing Publishable (Short) Stories For more information go to http://www.writer2writer.com Saving Emma – coming to Whiskey Creek Press January 2005 going downhill! Cheryl, thanks so much for your reply it helps so much to talk to you as you've been through this. I am so frustrated that last week I had a taste of being relatively well again and now I can't breathe. Everything you take is a double edged sword, the steroids, the antibiotics, is there anything that works without causing more problems. Decided to go back to doctors this morning, I seem to be there every week. Taking your advice about rest and lots of fluids, I do feel a little easier if I manage 8 hours sleep a night. After my holiday I'm going to try accupuncture, there must be something you can have that helps. I'm not going to give in to this but there are days when I feel real despair! This group is so important to me, if the doctors gave as much advice and support as you get here on line it would help lots. Love June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 HI ITs weird how an internet group can be such a strong presence in the life of someone chronically ill. I know how you feel. When I was younger I knew when I was getting ill. I was sick but there were periods of what to me was "near normal" health. Now I can't tell day to day if I am having a major flare or not. My lungs always hurt and on any given day I can feel like Im drowning in mucus and then the next day its starts to get better only to be followed by a bad day again... Anyways, if you need to talk let me know...Ive been there and done that. I say that with a nebulizer puffing away and a vest shaking the poo out of me...lol Becki Life is not measured by the number of breaths we take, but by the moments that take our breath away. Listed for Lungs 1/19/04 at Mayo Clinic ville,Fla. YOUNGLUNG EMAIL SUPPORT LIST http://health.groups.yahoo.com/group/YOUNGLUNG/ Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Hello everyone, After reading Becki`s mail, I was curious about her saying her lungs hurt. When you have pain in the lungs do you feel it in the back area, and if not how do you know it`s your lungs that are hurting. I have been feeling back pain in the right side of my back and I was wondering if it could be lung pain. I hope you can help me on this. Love to you all, , from Australia Re: going downhill! HIITs weird how an internet group can be such a strong presence in the life of someone chronically ill.I know how you feel. When I was younger I knew when I was getting ill. I was sick but there were periods of what to me was "near normal" health. Now I can't tell day to day if I am having a major flare or not. My lungs always hurt and on any given day I can feel like Im drowning in mucus and then the next day its starts to get better only to be followed by a bad day again...Anyways, if you need to talk let me know...Ive been there and done that. I say that with a nebulizer puffing away and a vest shaking the poo out of me...lol BeckiLife is not measured by the number of breaths we take, but by the moments that take our breath away.Listed for Lungs 1/19/04 at Mayo Clinic ville,Fla.YOUNGLUNG EMAIL SUPPORT LISThttp://health.groups.yahoo.com/group/YOUNGLUNG/Pediatric Interstitial Lung Disease Societyhttp://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 When I am really, really sick, I can feel my lungs hurt. Fortunately, I have been blessed to have good pulmonologists who believe me when I tell them that. When I feel them, I always feel them in front, though. And I mostly feel my left lung, which is the worse one; I have the most concentration of bronciectasis in the lower left lobe. Karin > Hello everyone, After reading Becki`s mail, I was curious about her saying her lungs hurt. When you have pain in the lungs do you feel it in the back area, and if not how do you know it`s your lungs that are hurting. I have been feeling back pain in the right side of my back and I was wondering if it could be lung pain. I hope you can help me on this. Quote Link to comment Share on other sites More sharing options...
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