e-books

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Marla, I know almost nothing about e-books. Some of the members have mentioned Kindle & related stuff. What bothers me about this sarc cookbook is that she says we have to order soon, because only so many will be printed, or something like that. If it's an e-book, I thought they could "print" all they want, since it's online. Maybe I've got it all wrong. Some of you Kindlers can enlighten us, I hope!

Sorry that your lymph nodes are acting up. Have you ever tried to find someone that does lymphatic massage, like Tracie encourages? Maybe that would help, without having to change or add meds.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Mon, 8 Nov 2010 20:46:21 -0700Subject: Re: Update on Rose

Rose, I grew up with Asthma, and grew out of it in my 20's, my first Sarc symptoms were a cough, the nurses at work told me I had Kennel cough, my Pulm doc thought it was just Asthma flaring, but I didn't think so, I found that the more walking I did, esp stairs, the more I coughed, it was a dry non productive cough, annoying as heck. I had all the breathing tests, CXR, etc, then one day I went in, I was just so tired and so tired of coughing, I told him to check me while I was in motion. He did a pulse ox and had me go up and down stairs, my O2 dropped down into the low 80s, and he put me on Pred. it went away, I did really good for several months, then it started again, another round of Pred. I was good again for several months, the next time I started with this cough I was really frustrated, I forgot to mention the first time I was on all kinds of inhalers, they really didn't help much. well this time with the cough I also got a terrible whole body rash, almost like blisters, it burned from the inside out, and after again many tests on the rash, I was put on Plaquanil, that kicked the cough and rash out. Now I still get a cough from doing too much, and I have lesions all over my body, my doc tried to take me off the Plaquanil since I was on the Remicade, and my lesions went crazy, so back on. I do with a cold get the cough and wheezing still, but it doesn't last long. sorry to go on, I really wonder what is what sometimes still. LIKE what do you think of this book link you sent, did you read that, I'm thinking about getting it, I don't understand this e-book thing, why can't we just buy the book? Anyway, having some strange things going on once again, more swollen lymph nodes, and some are painful, with the pain running down my arm??? who knows.... MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Just a little update: for the past few years, 1-2 times a year, I've been getting a wheezy cough. It comes after a cold, just as the cold is ending. A 6-day course of tapered Pred clears it right up, at least until now. About a month ago I had a mild cold, and sure enough, as the cold resolved here came the coughing & wheezing. So I called my local PCP for the Pred rx. It helped a little but didn't totally clear it up. It was nonproductive & no chest pain or tightness, so I decided to wait it out a little longer. About a week later I developed UTI symptoms, called the PCP & got an rx for Keflex. I also called the lung guy at the sarc clinic in Indianapolis, told him I was taking Advair twice a day, using a nebulizer twice a day & my rescue inhaler (albuterol) 2-3 times a day. He said maybe I had a "little bug" in my lungs, to give the Keflex a couple of days, and call back in 2 days to check in. When I called back I told the nurse that it was quite a bit better, I was only having bad coughing fits a couple of times a day & using the albuterol 1-2 times a day. I was surprised when she called back in a couple of hours to say that he wasn't very happy with that, changed the antibiotic to Cipro for 14 days & ordered another short course of Pred (16 days this time). I'm really glad that he did, because within 2 days I was feeling much better. No nebulizer or albuterol, maybe one mild coughing spell a day with very mild wheezing. I tolerate short courses of Pred very well. There is a point to this story! We need to be more aggressive in managing our health. I've not had the severe lung problems that many of you have had--I have one collapsed lobe due to scarring, but haven't needed oxygen & have most of my trouble climbing stairs or hills. I've had what is called "cough-variant" asthma for 15+ years, not experiencing the tightness & breathlessness most asthma sufferers do. So I think that I was a little too laid back about this episode. I'm glad that my sarc guy had me call back with an update because I wouldn't have done it otherwise, since I was feeling a little better. This cough & wheezing has been going on for a month now & I just didn't take it seriously. I intend to be more vigilant in the future. BTW, I had just had a chest CT & PFT a few weeks before this started, which were stable & a very normal ACE level. Also, this cough was nothing like the cough I had when the sarc first attacked my lungs, so I really don't think it's a sarc flare. I do think my asthma is getting worse & I ain't going to fool around with it anymore!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)