Guest guest Posted September 24, 2002 Report Share Posted September 24, 2002 Sharon, Sorry to hear that you are still having a time with the health and the surgery stuff. Thanks for the good thoughts and prayers. I am sending back to you. Sounds like you need them more than me. Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2002 Report Share Posted September 25, 2002 Sharon Guess this is the only rain dance we will do. Only thing that I saw close to a rain dance there. Gish there was no Indians!LOL I sure am tired of the heat and sun also. I will be glad when we get some of our liquid sunshine again! Lots of love Glenda Do you think we are ever going to see the end of this sun? We need to seriously consider that rain dance I think! Hope you are feeling better! Love, squeek Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2002 Report Share Posted October 5, 2002 Sharon, Please have it checked out...I worry about you guys... GET to the dr and make sure you are okay. hugs << My pain has been driving me crazy. It is a burning, stabbing type of pain. Thanks so much. Hugs, Sharon >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 Hope you can get your computer all up and running again, cause I am missing you! Post as soon as you can! Love, squeek Hi Squeek, I sure am missing you too! I have the computer running it's just a matter of time before it goes again There are lots of problems on it. Is today the luncheon???? I hope you have a great time and I want to hear all about it lol Hugs, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2002 Report Share Posted October 26, 2002 Sharon, I'm really sorry to hear that you are hurting so much! Stop it!! (Don't think that will help, but it's worth a try!) Take care, let others help you out and take it easy! M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Sharon, it's SO good to have you back.. boy have I missed you. How are you doing? You have to fill us in on YOU!! Yes, Lu was suppose to have her surgery today and Bill was suppose to let me know what happened and I haven't heard a word from him or Lu. My UTI infection is gone, but am still having bladder inflamation. Hoping to get it under control with meds. Everyone is doing really well about getting their flu shots. LOL Seems like a bunch got theirs yesterday, including me. Have YOU had YOURS???? Yes, I'm the flu shot nag around here, so if you haven't be sure to get one. I will let everyone else fill you in on themselves. I'm trying to catch up on the mail.. We had some pretty busy bees today. LOL I'm just glad you are back and hope you are feeling much better. How are you and your daughter doing? Let us know. Sending lots of hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Squeek, by now you have probably had your MRI. Don't worry about it. Yea... see how easy I can tell you to do that. LOL I'm sure they just had a cancellation or something. I know they did that with me twice and i paniced and everything was normal on the tests. Just know we are all here and I'm saying lots of prayes for you. Just want them to fix what is wrong. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Sharon Sorry to hear that you didn't get good news today from the tests that your husband had done. Please know that I have both of you in my thoughts and prayers. Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 i have sores on the roof of my mouth also.I'am going to the denitist this week i will ask some questions SHERRIE -- new dx--boy am I upset As if having RP, Sjogren's Syndrome, Trigeminal Neualgia etc. etc.etc. isn't enough!!! I saw the oral surgeon today because the roof of my mouth has sores on in and is very painful. He looks in it and comes back with a book that had all kinds of pictures of lesions and sores in it. He pointed to one and told me that I had this--under the picture it said "lupus ererythematosus" I am in shock! This is the doc that did the biopsy on the roof of my mouth a while ago--the one where I got the report not too long ago. Does anyone else have this? He wrote out a rx for kenalog paste which I have to put on the lesions. Do I believe him or is it me being in denial? Between these ugly diseases and the death of my parents I don't know whether I am coming or going--seriously. Thanks once again for being there for me. Sharon DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 Hello this is Chrissy Madison's mom i'd love it if you could email me a pic of you when you were younger Chrissy Mom to Louis 6 Madison 3 1/2 RSS Shane 1 1/2 10 mons Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2009 Report Share Posted September 17, 2009 Good morning! Please be careful taking my situation and applying it to anyone elses. Our diseases are not interchangeable and that makes it risky to take my O2 needs and whatever improvement I'm seeing and applying it to another's situation. I don't necessarily think the lessening of my O2 requirements when exercising has that much to do with exercise. The first time I went through rehab was in the late summer of 2006. I was newly diagnosed and only a few weeks out of the hospital. I likely still had considerable inflammation in my lungs. I was on high doses of prednisone to help eliminate the inflammation and stablize my condition. I was also still recovering from congestive heart failure at that time. All of this contributed to my need for large amounts of O2 when I exercised. Three years later, I've been stable for a long time and as far as I know there is little to no inflammation in my lungs and my heart is healthy. I now appear to need only 6 liters using cannula when I walk and on 3 using the NuStep or doing the exercise class at rehab. This keeps me at 92-94. Amazing! Now I have been using the treadmill pretty consistently for the last three years so I'm sure that plays at least a part but I just want to be really cautious and remind you that everyone's situation is different and not to think that because something happened one way for someone means that it will happen that way for everyone. Look after yourself! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, September 17, 2009 9:55:18 AMSubject: Re: Beth, i am so glad to see this on the internet. We have a 62 yr old friend who was diagnoised with pf last April. He will not wear his o2 and like I said to Bruce he doesn't want to. I try to tell him that I do everything I want even though I'am on it. He thinks mine is related to my asthma and it doesn't apply to him. I ended up on in after I went in the hospital with pulmonary edema. I can sit and go into small stores without it and stay at 93 sometimes higher depending on the warm air.So he thinks that its alright for him. I see that clearly exercise helps. You are not the only one i have read that it helps with o2 saturation and i'am going to show this to him. I already lost my dear uncle to this in June and our friend who was a quadrapedic just yesterday. I cannot go through another one now. I am just grateful my husband and i brought our friend to our house every other Sunday to get him away from the nursing home he was in. I am so heartbroken and never realized how much sorrow plays a part in your breathing.My brother in law is advancing with his ALS everyday and I do what I can for my sister but enough . They say God only gives what you can handle but today it feels like i cannot handle anymore. I am sorry to ramble but if I stop I cry. i guess i just was happy to see your post so when I see my friend at the funeral home for our other friend i can show him this and maybe he'll take it to heart. He is a fun loving guy and loves to go to the UP with my son fishing and i do not want that to stop. Again sorry for the rambling sharonp p asthma and ph From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: To: Breathe-Support@ yahoogroups. comDate: Thursday, September 17, 2009, 7:22 AM Congratulations! ! I'm so happy that the SS process went smoothly for you. I had also been told that 'everyone' is denied the first time around when I lived in NY. Thankfully that's not true anywhere and as others have mentioned because SS has something concrete like PFT values to base a decision on many of us would qualify by the time we're diagnosed. That's not to say that some might not have difficulty but it's not the norm. More importantly being able to do the 6 minute walk without O2 is amazing! Congratulations! It's interesting because I'm finding I'm able to use much less oxygen when exercising than I had to when I did rehab 3 years ago. I'm not completely certain what to attribute that to but right now I'm just grateful I don't need to wear the damn venti-mask when I'm walking. I will keep your family and all the jobs situations in my prayers. It's tough out there right now. Look after yourself !! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: kiki boettin <netwiz3 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, September 16, 2009 10:56:06 PMSubject: Disabilty andGood News I don't post to often but I wanted to tell everyone the good news I got today. I had been diagnosed with IPF in 07 . They found out I had ILD from Scleroderma and that I have Sjogrens and Raynauds and they are attacking all my organs. I was on Cytoxan for 5mo and got deathly sick at New Years . I was put on 02 24/7 and felt terrible for months. I had a ct scan done in June and the fibrosis is worse but I started Cellcept and several other meds for my heart. I was able to do the 6 min walk today slowly without 02 and my sat never went below 92, so I am hoping if I can lose some weight maybe it will improve my situation. On the home front my daughter, my son in law and then my son lost their jobs due to the economy. My son got a call from his old boss and he said he has been wanting him to work for him since he left . He is meeting him tomorrow for an interview to see if the job is something he would like. So please say a little prayer for all of them toget a jobs . Now about SS I wasn't going to apply because here in the great state of Illinois it is routine for everyone to get turned down. My friends would nag me non stop so I finally went . It took about 2 hrs with all of my papers and they said I would know in Sept or Oct . This was the end of May . Well I will get my 1st check next month . There were some glitches in getting hospital records to them but it went rather smoothly . So I say try it . I'm sorry about the rambling but I am excited and exhausted. Welcome to all the newbies. I hope to make it to Chattanooga . ipf 2/07 IL Quote Link to comment Share on other sites More sharing options...
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