Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 I was told that stress is a big factor with RP. I know it is for me. I usually have my biggest problems with RP right after a major stressful event in my life. I was also told that RP can also be brought on by a virus or a major change in your system. Don't know if this is correct or not but this is what I was told by my dr. when first diagnosed. Sorry to hear that you are flaring and hope the stressful things get a little easier for you. I am sending good thoughts that it will! Hope this helps! Try to avoid stress! I know yah right! Life brings us bunches but that is for sure. Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Deb - I would be happy to give you a keyboard - as long as you come get it! - H > > > > > > > > > > Hi all, > > > > > > > > > > I have a few questions about feeding tubes. It seems > > > > that > > > > > > > most > > > > > > > > of > > > > > > > > > > the kids have them. Can you tell me at what point > > they > > > > seem > > > > > > > to > > > > > > > > > need > > > > > > > > > > them? Our Ped wasn't following Noah that closely > > (will > > > > be > > > > > > now > > > > > > > > and > > > > > > > > > > I'm considering changing ... took me 3 mos to get the > > > > > > > chomosome 7 > > > > > > > > > > results that I'm sure were sitting there that long). > > > > > > > > > > > > > > > > > > > > Noah has never been sick and in hospital, he seems to > > > > eat but > > > > > > > > it's > > > > > > > > > > not much at a time, I'm getting really worried that > > we > > > > aren't > > > > > > > > > doing > > > > > > > > > > enough except at the same time I'm worried that he > > will > > > > need > > > > > > a > > > > > > > > > tube. > > > > > > > > > > Do you know what I mean? We were worried lately > > about > > > > > > > > > hypoglycemia > > > > > > > > > > he's always been a sweaty little guy (but then my > > others > > > > are > > > > > > > too) > > > > > > > > > and > > > > > > > > > > lately he started waking in the night ... we've been > > > > giving > > > > > > > him > > > > > > > > > milk > > > > > > > > > > not knowing if it was his sugars or if it was just > > > > > > > behavoural. > > > > > > > > > Also > > > > > > > > > > since finding more info about RSS from here and > > Magic, I > > > > > > > started > > > > > > > > > > putting a little corn starch in his milk before bed. > > > > > > > > > > > > > > > > > > > > I'm hoping the endocrinologist will shed some light > > next > > > > week > > > > > > > > when > > > > > > > > > we > > > > > > > > > > go cause we don't see the ped until november. I'm > > also > > > > going > > > > > > > to > > > > > > > > > ask > > > > > > > > > > about that drug that starts with P for appetite. > > Sorry > > > > not > > > > > > up > > > > > > > on > > > > > > > > > all > > > > > > > > > > the names yet. I'm going to see if he'll check > > Noah's > > > > sugar > > > > > > > when > > > > > > > > > he > > > > > > > > > > does the other testing. We haven't been to the ped > > > > since the > > > > > > > > > spring > > > > > > > > > > so I don't even know if NOah has gained weight or > > not. > > > > > > > > > > > > > > > > > > > > Do the kids eat too when they have tubes? > > > > > > > > > > > > > > > > > > > > Dawna > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2009 Report Share Posted December 11, 2009 Hi , coping-mentally is the hardest challenge..it's taking me a whole year just to stop thinking about death on a daily basis..i am doing much better NOW..i just decided to start living the days that i have and not worry about whats coming in the future..This last stay in the hospital was much more peaceful for me. I actually knew that i wasnt going to die there..i knew that i was ill-i went to hospital-they fix you then you go home..as for coping daily...shortness of breath is the worst! meds..yes...prednisone, albuterol sol (nebulizer) 4 x's daily, 02 24/7,, amitriptylin 10mg-for pain & antidepressant, tylenol 3 w/codeine for cough & pain, zertec,symbicort 2 am & 2 pm, vitamin b 12, 1 jigger monavie-thats what i take daily..sometimes when allergies real bad i have a nasal spray that pulmo dr prescribed and it helps alot..veramyst..how are you coping my dear? Dot/uip10/08/42/sa,tx From: fracolpatricia <fracolpatricia@ yahoo.com>Subject: I'm NewTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 9, 2009, 11:55 AM Hi Everyone,I'm new to this site. I was diagnosed with IPF 4 years ago. I've been on oxygen at night for a year, and with exertion during the day. I now have to use it when I go out and about. One morning I was going to run an errand about 10 minutes form my house. I didn't feel too well, but I didn't use my oxygen. I had a wreck. Ran up into a yard and hit a big decorative bolder. I must have blacked out, because I don't remember what happened. That was two months ago and I've been afraid to drive since. Now I feel trapped, because I can't go out whenever I want, and have to depend on someone else to take me. Sometimes my oxygen level drops to 78-79 If I don't have it on. I cough a lot also. I would like to know if any of you have a problem with a fireplace. My husband likes to burn our fireplace, but it really bothers me. Anyone that doesn't have a problem breathing just doesn't understand this disease. I would rather have cancer or heart disease. I've rambled..... hope I made sense. Anxious to hear from anyone. It's so nice to be in contact with other people that understand.Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2009 Report Share Posted December 11, 2009 Dot,Having a real hard time mentally. I don't how to stop this worry wheel I'm on. The pulmo Dr. that I chose is less than accomadating so I am going to see another one on monday. I hate this. I am on depressant meds but it doesn't seem to work. I guess I'll have to wait until Monday and see how it goes. Are you on a transplant list? To: Breathe-Support Sent: Fri, December 11, 2009 11:03:18 AMSubject: Re: - Hi , coping-mentally is the hardest challenge..it' s taking me a whole year just to stop thinking about death on a daily basis..i am doing much better NOW..i just decided to start living the days that i have and not worry about whats coming in the future..This last stay in the hospital was much more peaceful for me. I actually knew that i wasnt going to die there..i knew that i was ill-i went to hospital-they fix you then you go home..as for coping daily...shortness of breath is the worst! meds..yes... prednisone, albuterol sol (nebulizer) 4 x's daily, 02 24/7,, amitriptylin 10mg-for pain & antidepressant, tylenol 3 w/codeine for cough & pain, zertec,symbicort 2 am & 2 pm, vitamin b 12, 1 jigger monavie-thats what i take daily..sometimes when allergies real bad i have a nasal spray that pulmo dr prescribed and it helps alot..veramyst. .how are you coping my dear? Dot/uip10/08/ 42/sa,tx From: fracolpatricia <fracolpatricia@ yahoo.com>Subject: I'm NewTo: Breathe-Support@ yahoogroups. comDate: Wednesday, December 9, 2009, 11:55 AM Hi Everyone,I'm new to this site. I was diagnosed with IPF 4 years ago. I've been on oxygen at night for a year, and with exertion during the day. I now have to use it when I go out and about. One morning I was going to run an errand about 10 minutes form my house.. I didn't feel too well, but I didn't use my oxygen. I had a wreck. Ran up into a yard and hit a big decorative bolder. I must have blacked out, because I don't remember what happened. That was two months ago and I've been afraid to drive since. Now I feel trapped, because I can't go out whenever I want, and have to depend on someone else to take me. Sometimes my oxygen level drops to 78-79 If I don't have it on. I cough a lot also. I would like to know if any of you have a problem with a fireplace. My husband likes to burn our fireplace, but it really bothers me. Anyone that doesn't have a problem breathing just doesn't understand this disease. I would rather have cancer or heart disease. I've rambled..... hope I made sense. Anxious to hear from anyone. It's so nice to be in contact with other people that understand.Pat Quote Link to comment Share on other sites More sharing options...
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