Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 In a message dated 10/23/2002 11:12:18 PM Central Daylight Time, libra_83301@... writes: > > Margo > Welcome I know you will love this group it has been a great help to me. I have three girls and two of my girls have CF. Where are you from? We live in Iowa. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2002 Report Share Posted October 23, 2002 ---Deb,we live in Wa State. Thanks for responding to my post, from what I've seen threw reading some of the posts, I'm going to learn a lot more about CF. Its late, but will posts more in the morning. Margo In cfparents@y..., gdattig5@a... wrote: > In a message dated 10/23/2002 11:12:18 PM Central Daylight Time, > libra_83301@y... writes: > > > > > > Margo > > > > Welcome I know you will love this group it has been a great help to me. I > have three girls and two of my girls have CF. Where are you from? We live in > Iowa. Deb A > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 Wow! was she being treated for other things? What made them look at CF? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2002 Report Share Posted November 17, 2002 Happy thoughts are coming your way from Ohio Becky with a few white fluffy snow flakes. Get well " Hi " Hey , I feel much better mentally today I was just a basket case last night.I have an open bloody sore where my port is (the tegaderm took off the first 2 layors of skin when I changed the dressing),my nose has a bad cut in it,razer burn, runny nose,chills that vibrate the bed, and a fever, not to mention the ever so annoying cough that won't let me sleep.Ughhhhhhhhhhhhhhhhhhh.... Plus this morning I woke up with my eyes swollen shut and they were gooked together with slim. Becki YOUR FAVORITE LilGooberGirl YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/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 February 12, 2003 Report Share Posted February 12, 2003 Hi Sheila, I look in the mirror each day and notice that whether or not I am tired, my eyes look like I am. If I wake up with energy and do a few things, around 1:30-2:00 I begin to feel tired. It does not matter if I do or I don't, I feel the same way. I am blessed with a wonderful husband who will tell me to go lay down, even when I rest I still feel the same way. I had this idea that if I tried to push myself to get up and go out and do something, I would sought of beat the feeling of being tired. It doesn't help. I thought that maybe the fact that I was staying in and laying around was causing me to be depressed and thus causing me to look and feel tired. But getting out doesn't make a difference. I feel very irritable and full of tension. I think maybe it's the medication. I decide not to take it to see if my mood changed. Please do not try this (LOL) as it only causes you to feel worse. My mood did not change by not taking the medication. The pain got worse and so did my temper. Silly me...what was I thinking...Oh I forgot..sometimes I don't think. It's funny you mentioned about looking in the mirror. I am 39 years old and hate what I see when I look in the mirror. My eyes always look tired. Even if I put on makeup to try and look better...I still have that " something's wrong " look about me. As far as not wanting to go to far from home. Seems to be my lifestyle lately. I hate getting invited to things. I like being near home. If I go out shopping, I like to go alone in case I need to get home fast. I do try and push myself. Every once in a while I do find that picking myself up does help. The fact that I accomplished a few things during the day makes me feel better. I think it is all about knowing your limits and sticking to them. If I am staying home (New York's been too cold to go out) I open my blinds and let the sun in. I find the sunshine lifts my spirits. I crack the window a little to get a little fresh air. Hope you feel better...and remember that although we may not be " perfect " in body...we can be " perfect " in spirit. Be good to yourself and when you look in the mirror...see what's inside...the people who truly love you see you that way! Beautiful always...no matter how tired you look! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 Hello t. I recently tried to work again and I lasted only a week before I was going to the hospital, via ambulance. You have to prioritize things. Go on SSI-disability if you can. Spend as much time with your son. I chose my son (which it was just he and I for 6 yrs....since he was 7 months old). Now I chose both my son, 17, and my daughter, 7. It's your children that are most important and the time you spend with them. Blessings, In California > Hi all, > This is the first chance I have had to write and say > hello. I am Decatur,GA. I am a 30 yr old single mom of a great 7 yr > old son Noah. I was diagnosed with SLE three years ago and I am > still having a hard time with major flare ups that have cost my my > last job. Anyway Thanks for being there. t Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 .... Barb, can you ask Mike if he got my last email to him? I know he's been busy, but i haven't gotten a response. Don't need one, just need to know that he got mine, thanks... ------------ See my post about email problems. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 > ... Barb, can you ask Mike if he got my last email to him? It is in the batch of email I forwarded him from home today. I sent him an email a little while ago on how to change some settings so he could view the attached messages, so he should get it next time he checks messages. If he is still having difficulty accessing them tomorrow, I will read them off to him by phone next time we talk. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2004 Report Share Posted July 18, 2004 It is in the batch of email I forwarded him from home today. I sent him an email a little while ago on how to change some settings so he could view the attached messages, so he should get it next time he checks messages. ---------- We got an " OE deleted attachment " message on your batch email and nothing else has come in. I have checked several times already. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Genie, I am so sorry to hear about your accident. I believe one of the signs of my diseases was falling asleep at the wheel of my car and rolling it. No one else was involved and I didn't have a scratch on me but I now believe it was due to sleep apnea which can add to heart/lung diseases. I had already been diagnosed with pneumonitis, finally went to a sleep lab and was given a c-pap but not examined any further to see if I already had other damage from it. Finally a cardiologist diagnosed PH and sent me to a pulmonologist who then added COPD, PF and heart/lung failure over the last two years. I know how I was in shock from the car accident so maybe you can take yours as a reason to insist on more thorough and complete tests in order for you to get necessary treatment as early as possible. The sooner you are treated the longer you have for the treatments to work. Do what you need to do to take care of yourself and know that we are all here for you. Have that concussion followed up to see that there are no long term lingering effects. Margaret To: Breathe-Support Sent: Monday, March 2, 2009 7:49:27 AMSubject: Re: Hi Genie... sorry to hear about your car accident and of course I hope you are doing better day by day. Not good news either that you are having some progression. If you don't feel like posting read the posts frequently.. .you'll read something from someone that will be helpful to you too. I know you are down right now so I send you a hug and a prayer! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sorry I have not answered any of the posts lately. I just totaled mycar and ended up with a concussion. I also learned that one of mypulmonary nodules is growing. Have not felt like talking to anyonelately. I wish you all well. Genie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Genie, I am so sorry to hear about your accident. I believe one of the signs of my diseases was falling asleep at the wheel of my car and rolling it. No one else was involved and I didn't have a scratch on me but I now believe it was due to sleep apnea which can add to heart/lung diseases. I had already been diagnosed with pneumonitis, finally went to a sleep lab and was given a c-pap but not examined any further to see if I already had other damage from it. Finally a cardiologist diagnosed PH and sent me to a pulmonologist who then added COPD, PF and heart/lung failure over the last two years. I know how I was in shock from the car accident so maybe you can take yours as a reason to insist on more thorough and complete tests in order for you to get necessary treatment as early as possible. The sooner you are treated the longer you have for the treatments to work. Do what you need to do to take care of yourself and know that we are all here for you. Have that concussion followed up to see that there are no long term lingering effects. Margaret To: Breathe-Support Sent: Monday, March 2, 2009 7:49:27 AMSubject: Re: Hi Genie... sorry to hear about your car accident and of course I hope you are doing better day by day. Not good news either that you are having some progression. If you don't feel like posting read the posts frequently.. .you'll read something from someone that will be helpful to you too. I know you are down right now so I send you a hug and a prayer! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi Sorry I have not answered any of the posts lately. I just totaled mycar and ended up with a concussion. I also learned that one of mypulmonary nodules is growing. Have not felt like talking to anyonelately. I wish you all well. Genie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2009 Report Share Posted April 17, 2009 Yea, I do the same thing at the computer----stand up and stretch periodically, it does feel good. Working at the computer seems to be the hardest thing to do, for me---makes it harder to breathe, so I try not to spend to much time in front of it, problem is I get carried away trying to read all the posts and the next thing you know 2 or three hours has gone by. I do use my oximeter very religiously when exercising and I also check it during the day. I am not afraid of getting the o2 when it is time, but I don't feel the need for it just yet. The exercise routine is getting "old" if you know what I mean!!!!! It would be nice to just kick back, relax and enjoy my retired life, but we know that ain't gonna happen. G. UIP/IPF 5/07 AZ. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.