Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 Bless you heart for doing the EMG! Back in I worked at MS Baptist Med Ctr in the neuro lab where they did those things. I have seen grown men cry. You are very brave Bruce. > > > > > I fell off the map for a while but now I am back. I went into a big > > > denial phase. My lung capacity went up to 80% and I stopped needing > > > oxygen. My lungs are stable. So I went out of the lung disease > > > world for a while. Turns out we can run but we can't hide. My lungs > > > are still good but I've had a URI I can't seem to get rid of. So I > > > saw a weekend doc yesterday who gave me some levaquin and tussinex > > > (now that is the stuff) and hopefully will get better. It sucks to > > > have tonsillitis at 50! > > > But the thing is he looked at my medical records with a fresh eye > and > > > announced that probably what is the root of all evil in my body is > > > mixed connective tissue disease. And from what I read and feel I am > > > pretty sure he's right. I will probably have the tests done at some > > > point but not yet. > > > > > > I don't know why in particular I tuned back in tonight but was > > > saddened to read 's post. Godspeed, . > > > > > > Missed you guys! Bruce, Leanne, Mama-Sher, Z, Babs, Joyce, > > > -Beth, and all my peeps. I hope you have been well and > > > happy. > > > > > > S, Lubbock, TX > > > NSIP w/PF 12/2006 > > > > > > > > > > > >No virus found in this incoming message. > > >Checked by AVG - http://www.avg.com > > >Version: 8.0.138 / Virus Database: 270.4.10/1549 - Release Date: > 7/12/2008 4:31 PM > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2008 Report Share Posted July 18, 2008 Hey everybody, I had a alright birthday last weekend. Thanks to everyone who wished me well. Today hit the nail in the head with showing myself how bad shape I'm in My mom took me to Best Buy because both my parents wanted to see me out of the house for a little while. I started out okay in there, browsing the video games like I always do. I had a portable tank with me and my rescue inhaler. My mom went to another part of the store. (At the time we didn't know they had wheelchairs, and this BB is a decent sized one). Anyway, I started to feel my enegry slump, started to get short of breath, I started to feel hot and sweaty (I was alright when I first entered the store..) & my legs felt like they were gonna buckle from under me; so I got myself out of the way and I had to plop myself on the floor and just sit there. Feeling pretty embarassed but I didn't feel good one bit so I sat there catching my breath for about five minutes and turned the dial up on my tank... By the time I stood up and got the games I wanted to buy togheter at the check out I felt even worse a manager came by with a wheel chair he saw how much trouble I was having. So after I checked out and left my mom was able to wheel me to the car. (At least we know next time they have a chair...now I'm assuming most places have wheelchairs avaiable?). By the time I got home I had a migraine -- now is gone I promptly fell asleep on the couch for a few hours. I didn't think I could feel so horriable. This made me realize how serious this disease is, even more. Friends/Family will have to understand I won't be able to do what I used to...even walking around a shopping centre. It's grasped on a little, my dad has been easier with me on "chores" if he gives me any. I also realize work is far cry out, I don't think I will see it for a long long long time. I see my lung doctor on Monday, I'm going to tell her what happened today during my little adventure out. On the way home someone noticed my mom's front tire had a nail in it so she has to get her tire checked...hopefully I'll be able to keep the appointment. But I don't really want to get in a car accident cause the tire blew on the interstate on the way to the hospital either. I've been reading all the posts, I just am not sure how to respond to most of them. But I am thinking of everybody everyday in my thoughts and sending lots of love/hugs and lots of friendship! /23/Ohio ~ Non-Hodgkins Lymphoma Survivor 2 years 12/2005 ~ Autologus Bone Marrow Transplant 09/2006 ~ Pulmonary Fibrosis due to chemotherapy 06/2008 ~. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Hi S... I noticed you hadn't been posting much lately. Good to hear from you. I'm just keepin' on keepin' on... I have been looking forward to cooler weather but forecast is for high 90s next week. Uucccckkkk. I share your arthritis dx. Where does yours settle? Mine is primarily in the spine and then hands, wrists and shoulders. I don't have RA either. Take care . MamaSher, age 69. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Hi all Been doing OK, not great, lately. All of my bloodwork came back for any specific autoimmune disease. I see my GP doc again the first week of September, also my pulmo that week. Come to think of it, also the oral surgeon. I guess it is going to be a busy week!I did get a diagnosis of arthritis but at least no Rheumatoid. But the naprosen caused fluid to build up around my heart so we upped the Lasix. And then the pulmo called in a burst and doxycycline to try to clear out the chest. It is my goal in life to never had another chest tube!It is raining buckets outside. And I mean buckets! This is the first rain of late summer with a cool front that reminds us fall is in fact coming. Maybe this week will be cooler. Hope all of you are well.Welcome to the newbies! I hate you had to be hear but glad you found us. Our family just gets bigger. S, Lubbock, TXNSIP w/PF 12/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 Mostly in my knees, particularly the right knee and ankle. I have been taking Darvocet for relief. What about you? It works well and I have taken enough of it that it does not make me loopey. > > Hi S... I noticed you hadn't been posting much lately. Good to hear from you. > I'm just keepin' on keepin' on... > I have been looking forward to cooler weather but forecast is for high 90s next week. Uucccckkkk. > I share your arthritis dx. Where does yours settle? Mine is primarily in the spine and then hands, wrists and shoulders. I don't have RA either. > Take care . > > MamaSher, age 69. IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > Hi all > > > Been doing OK, not great, lately. All of my bloodwork came back for > any specific autoimmune disease. I see my GP doc again the first week > of September, also my pulmo that week. Come to think of it, also the > oral surgeon. I guess it is going to be a busy week! > > I did get a diagnosis of arthritis but at least no Rheumatoid. But the > naprosen caused fluid to build up around my heart so we upped the > Lasix. And then the pulmo called in a burst and doxycycline to try to > clear out the chest. It is my goal in life to never had another chest > tube! > > It is raining buckets outside. And I mean buckets! This is the first > rain of late summer with a cool front that reminds us fall is in fact > coming. Maybe this week will be cooler. Hope all of you are well. > > Welcome to the newbies! I hate you had to be hear but glad you found > us. Our family just gets bigger. > > S, Lubbock, TX > NSIP w/PF 12/2006 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2008 Report Share Posted August 10, 2008 S. Hello fellow !!! Good to see you posting again. I think most of us have some arthritis..it comes with that dreaded age thing! Today's weather here didn't help much...raining and in the 70's all day. I needed Advil today for my hands and knees. Loads of lightning and thunder for a while , a good day to hunker down and read and then we watched some of the Olympics. Those kids just make me happy!! Their enthusiasm and drive for their sport and country, no matter which country, makes me feel good. I hope everyone had a good week-end and that we all have good days ahead.. It's time for bed. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower lsmith7892006 wrote: Been doing OK, not great, lately. All of my bloodwork came back for any specific autoimmune disease. I see my GP doc again the first week of September, also my pulmo that week. Come to think of it, also the oral surgeon. I guess it is going to be a busy week! I did get a diagnosis of arthritis but at least no Rheumatoid. But the naprosen caused fluid to build up around my heart so we upped the Lasix. And then the pulmo called in a burst and doxycycline to try to clear out the chest. It is my goal in life to never had another chest tube! It is raining buckets outside. And I mean buckets! This is the first rain of late summer with a cool front that reminds us fall is in fact coming. Maybe this week will be cooler. Hope all of you are well. Welcome to the newbies! I hate you had to be hear but glad you found us. Our family just gets bigger. S, Lubbock, TX NSIP w/PF 12/2006 No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.0/1602 - Release Date: 8/9/2008 1:22 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 , It's so good to hear from you again! I'm glad you're hanging in there in spite of the slings and arrows that life throws at all of us. And by the way, we share that goal...NO MORE CHEST TUBES!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Hi all Been doing OK, not great, lately. All of my bloodwork came back for any specific autoimmune disease. I see my GP doc again the first week of September, also my pulmo that week. Come to think of it, also the oral surgeon. I guess it is going to be a busy week!I did get a diagnosis of arthritis but at least no Rheumatoid. But the naprosen caused fluid to build up around my heart so we upped the Lasix. And then the pulmo called in a burst and doxycycline to try to clear out the chest. It is my goal in life to never had another chest tube!It is raining buckets outside. And I mean buckets! This is the first rain of late summer with a cool front that reminds us fall is in fact coming. Maybe this week will be cooler. Hope all of you are well.Welcome to the newbies! I hate you had to be hear but glad you found us. Our family just gets bigger. S, Lubbock, TXNSIP w/PF 12/2006 Quote Link to comment Share on other sites More sharing options...
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