Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Good morning all! After my last round of doctors visits my sisters (4) wanted to get together to discuss all the details. They want to keep up to date, aware and familiar with my condition and its progression. WHAT A WONDERFUL DAY! It was the first time they had seen me since I was put on 02. Even though I had told them previously, it was a shock for them to see me wearing the nose hose. They all had a little cry until I told them not to because I was feeling better and that is a good thing! We spent the rest of the afternoon in the pool, floating around, talking politics, children, mother, old memories, school, husbands, food , ETC!!! They all know that my favorite foods are those served cold.....So they fed me; lots of cold salads---dill cucumber chicken salad UUM....tuna capers tomatoes UUUM.....marinated veggies UUM.....pasta UUM and fruit UUM... We swam and talked some more and then had cake and coffee and talked doctors and tests and such for another 3 hours...WHAT A GREAT DAY and a great bunch of sisters. I read so much about people with strong support groups and I know from personal experience what a difference it makes. My heart is so full today and I wanted to share with my air family and other part of my support group. Roxanne, 58, South Carolina 2006 Asthma/ PF 2008 IPF/ Sarcoidosis/Gerd Lady Slipper Orchid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Roxanne, That sounds like an awful lot of fun! I'm so happy you got to spend time with your sisters....there's nothing like family is there. As you know we just had a big party for my parents a couple of weeks ago and one of the best parts for me was getting to spend time with my siblings, my two wonderful sisters and even my two somewhat dopey brothers. (I'm kidding, I love them both to death!) You got lots of yummy eating done too didn't you? Yummy but it sounds healthy too! Bonus!! I've forgotten Roxanne...where in South Carolina are you? Maybe sometime we could get to meet! I'm in Durham NC but I'm going to Florida in a couple of weeks to visit Peggy and will be driving down 95 through eastern SC. Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Pool Party Good morning all!After my last round of doctors visits my sisters (4) wanted to get together to discuss all the details. They want to keep up to date, aware and familiar with my condition and its progression.WHAT A WONDERFUL DAY! It was the first time they had seen me since I was put on 02. Even though I had told them previously, it was a shock for them to see me wearing the nose hose. They all had a little cry until I told them not to because I was feeling better and that is a good thing! We spent the rest of the afternoon in the pool, floating around, talking politics, children, mother, old memories, school, husbands, food , ETC!!!They all know that my favorite foods are those served cold.....So they fed me; lots of cold salads---dill cucumber chicken salad UUM....tuna capers tomatoes UUUM.....marinated veggies UUM.....pasta UUM and fruit UUM...We swam and talked some more and then had cake and coffee and talked doctors and tests and such for another 3 hours...WHAT A GREAT DAY and a great bunch of sisters. I read so much about people with strong support groups and I know from personal experience what a difference it makes. My heart is so full today and I wanted to share with my air family and other part of my support group.Roxanne, 58, South Carolina2006 Asthma/ PF2008 IPF/ Sarcoidosis/ GerdLady Slipper Orchid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Oh Beth, getting to meet would be wonderful! I'm in West Columbia, right off I-26 (about an hour and half north of I-95 which you would have to pick up to go to Fla). Let me know and we'll see if we can coordinate something.. Roxanne, 58, South Carolina 2006 Asthma/ PF 2008 IPF/ Sarcoidosis/Gerd Lady Slipper Orchid > > Subject: Re: Pool Party > To: Breathe-Support > Date: Sunday, August 31, 2008, 10:21 AM > Roxanne, > That sounds like an awful lot of fun! I'm so happy > you got to spend time with your sisters....there's > nothing like family is there. As you know we just had a > big party for my parents a couple of weeks ago and one of > the best parts for me was getting to spend time with my > siblings, my two wonderful sisters and even my two somewhat > dopey brothers. (I'm kidding, I love them both to > death!) > You got lots of yummy eating done too didn't you? > Yummy but it sounds healthy too! Bonus!! > I've forgotten Roxanne...where in South Carolina are > you? Maybe sometime we could get to meet! I'm in > Durham NC but I'm going to Florida in a couple of weeks > to visit Peggy and will be driving down 95 through eastern > SC. > > Beth > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > Change everything. Love and Forgive > > > > > > Pool Party > > > Good morning all! > > After my last round of doctors visits my sisters (4) wanted > to get together to discuss all the details. They want to > keep up to date, aware and familiar with my condition and > its progression. > > WHAT A WONDERFUL DAY! > > It was the first time they had seen me since I was put on > 02. Even though I had told them previously, it was a shock > for them to see me wearing the nose hose. They all had a > little cry until I told them not to because I was feeling > better and that is a good thing! > > We spent the rest of the afternoon in the pool, floating > around, talking politics, children, mother, old memories, > school, husbands, food , ETC!!! > They all know that my favorite foods are those served > cold.....So they fed me; lots of cold salads---dill cucumber > chicken salad UUM....tuna capers tomatoes UUUM.....marinated > veggies UUM.....pasta UUM and fruit UUM... > > We swam and talked some more and then had cake and coffee > and talked doctors and tests and such for another 3 > hours...WHAT A GREAT DAY and a great bunch of sisters. I > read so much about people with strong support groups and I > know from personal experience what a difference it makes. My > heart is so full today and I wanted to share with my air > family and other part of my support group. > > Roxanne, 58, South Carolina > 2006 Asthma/ PF > 2008 IPF/ Sarcoidosis/ Gerd > Lady Slipper Orchid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Hi Beth, I hope your weekend is great. I have a question for you. Can coffee cause inflammation? I love it in the morning, two cups and i seem to open up. I would quit if i had to. I finally saw a lung guy but had to pay two hundred of my bill up front because i still owed him from being in hospital. He put me on Advair and Spriva to open up my lungs because of asthma. one walgreens said it opens up small and big airways another said thats not true. I don't trust anyone anymore. The heart doc said in may my heart was getting better and noone has even mention the ph at all. I have my own feelings about that but since i have no insurance no tests can be done. My sister in law said it sometimes puts itself in check after awhile. I went into the hospital in feb of 2008 with pulmonary edema and since i have lost 50lbs. all water. I was taking large and i mean large does of tums and alka seltzer and prilosec for a year because i thought i had gerd. My primary really never said anything about the high blood pressure or the gerds. I think sometimes without insurance you really get brushed aside. No offense to the medical field but it just my opinion. now i can go up my stairs work in my yard and can stay off o2 for 5 hrs at atime. I use my incentive spirometor faithfully and take what meds i can afford and walk 3 to 4 thousand steps a day. The heart guy asked for 2 thousand so i keep my medical issue s really close because i need to manage them for 1 more year because i refuse to die in my 50's. I can see my kids handling it better in 60's. I know that sounds grandous of me but i can only do so much without money and i do not see insurances or pharmacys getting reasonable with meds. If a man wants a hard on it cost about 300 a month. if a ph patient wants to live it cost 1000 or more a month for same thing.There is no justice. Sorry for rambling but you seem really interested in peoples vies or what there afraid of. I just can not go on worrying when i might drop dead and since my heart was improving in may and iam still doing what he said life isn't worth living if i have to worry about dieing constantly. Again thanks for my long ramble. Question i started with is coffee bad. sharon p ph 2008 Subject: Re: Pool PartyTo: Breathe-Support Date: Sunday, August 31, 2008, 9:21 AM Roxanne, That sounds like an awful lot of fun! I'm so happy you got to spend time with your sisters....there' s nothing like family is there. As you know we just had a big party for my parents a couple of weeks ago and one of the best parts for me was getting to spend time with my siblings, my two wonderful sisters and even my two somewhat dopey brothers. (I'm kidding, I love them both to death!) You got lots of yummy eating done too didn't you? Yummy but it sounds healthy too! Bonus!! I've forgotten Roxanne...where in South Carolina are you? Maybe sometime we could get to meet! I'm in Durham NC but I'm going to Florida in a couple of weeks to visit Peggy and will be driving down 95 through eastern SC. Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Pool Party Good morning all!After my last round of doctors visits my sisters (4) wanted to get together to discuss all the details. They want to keep up to date, aware and familiar with my condition and its progression.WHAT A WONDERFUL DAY! It was the first time they had seen me since I was put on 02. Even though I had told them previously, it was a shock for them to see me wearing the nose hose. They all had a little cry until I told them not to because I was feeling better and that is a good thing! We spent the rest of the afternoon in the pool, floating around, talking politics, children, mother, old memories, school, husbands, food , ETC!!!They all know that my favorite foods are those served cold.....So they fed me; lots of cold salads---dill cucumber chicken salad UUM....tuna capers tomatoes UUUM.....marinated veggies UUM.....pasta UUM and fruit UUM...We swam and talked some more and then had cake and coffee and talked doctors and tests and such for another 3 hours...WHAT A GREAT DAY and a great bunch of sisters. I read so much about people with strong support groups and I know from personal experience what a difference it makes. My heart is so full today and I wanted to share with my air family and other part of my support group.Roxanne, 58, South Carolina2006 Asthma/ PF2008 IPF/ Sarcoidosis/ GerdLady Slipper Orchid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Roxanne, I just looked at Yahoo Maps and it certainly looks doable to me. Let me sort out dates with Peggy and I'll be in touch! Wouldn't it be fun to have lunch or even a glass of iced tea together and chat?!! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Pool Party> > > Good morning all!> > After my last round of doctors visits my sisters (4) wanted> to get together to discuss all the details. They want to> keep up to date, aware and familiar with my condition and> its progression.> > WHAT A WONDERFUL DAY! > > It was the first time they had seen me since I was put on> 02. Even though I had told them previously, it was a shock> for them to see me wearing the nose hose. They all had a> little cry until I told them not to because I was feeling> better and that is a good thing! > > We spent the rest of the afternoon in the pool, floating> around, talking politics, children, mother, old memories,> school, husbands, food , ETC!!!> They all know that my favorite foods are those served> cold.....So they fed me; lots of cold salads---dill cucumber> chicken salad UUM....tuna capers tomatoes UUUM.....marinated> veggies UUM.....pasta UUM and fruit UUM...> > We swam and talked some more and then had cake and coffee> and talked doctors and tests and such for another 3> hours...WHAT A GREAT DAY and a great bunch of sisters. I> read so much about people with strong support groups and I> know from personal experience what a difference it makes. My> heart is so full today and I wanted to share with my air> family and other part of my support group.> > Roxanne, 58, South Carolina> 2006 Asthma/ PF> 2008 IPF/ Sarcoidosis/ Gerd> Lady Slipper Orchid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Sharon, Good morning and I hope your weekend is going well also! It does sound as though you've got alot on your mind and an awful lot that you're trying to handle. I do understand the problem of having no insurance. I was fortunate to hook up with the finanacial hardship program at Duke as that pays for the care I'm receiving currently and I become eligible for Medicare on November 1! To answer your first question. Many studies have shown that coffee does cause some inflammation. Whether it's enough to cause a problem for people....it depends on what you read. I think most doctors would come down on the side of moderation. If you're drinking one or two cups of coffee a day it's unlikely to cause harm. But that's a very general statment and that doesn't make coffee safe for you. Has your doctor told you to stop? If he had, given your cardiac problems I'd probably go ahead and take his advice. Secondly, Advair has two ingredients, a corticosteroid which reduces the inflammation or swelling in your airways and a bronchodilator called salmeterol which helps to relax the muscles around your airways so that they do not constrict and narrow your breathing passages as in an asthma attack. Advair is meant to be taken every day, usually twice daily in order to prevent the occurance of an attack. Keeps the muscles around your airways relaxed and the inflammation down so that no attack has a chance to occur. In theory it should affect all the airways because once it's inhaled it crosses into the bloodstream and can act on all airways and not just as far as you can inhale. Spiriva is a different animal, it's a antispasmodic or anticholinergic drug that works to inhibit the muscle spasms that happen in an asthma attack. It's slow acting so it can't be used as a rescue inhaler. It works more slowly and over time prevents those sudden spasms from getting started in the first place. It probably sounds similar to the Salmeterol in the Advair but it's action is different and that's why people are often given prescriptions for both. I used Advair for about a year though I do not have asthma. In my case the doctor was interested in getting the steroid directly into my lungs to prevent inflammation and help to control my cough. I've stopped using it for now as I'm not terribly troubled by the cough at present and the constant thrush in my mouth was driving me batty. Should I need to though I would use it again. I don't know how much that helps. If something isn't clear please let me know. I would encourage you to talk to your pharmacist about the meds you are taking. These folks go to school for 5 years to be licensed and have very strict requirements for continuing ed to keep up. When you go to a Walgreens, CVS or any pharmacy for that matter, make sure you are talking to the pharmacist, an RPh and not just a pharmacy technician. And Sharon, I'm sure you are but please be careful about weaning yourself off O2. Just make sure your sats stay up. Since your heart has already sustained damage, you don't want it to work harder than it has to to get O2 to the rest of your body!! Look after yourself! Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Pool Party Good morning all!After my last round of doctors visits my sisters (4) wanted to get together to discuss all the details. They want to keep up to date, aware and familiar with my condition and its progression.WHAT A WONDERFUL DAY! It was the first time they had seen me since I was put on 02. Even though I had told them previously, it was a shock for them to see me wearing the nose hose. They all had a little cry until I told them not to because I was feeling better and that is a good thing! We spent the rest of the afternoon in the pool, floating around, talking politics, children, mother, old memories, school, husbands, food , ETC!!!They all know that my favorite foods are those served cold.....So they fed me; lots of cold salads---dill cucumber chicken salad UUM....tuna capers tomatoes UUUM.....marinated veggies UUM.....pasta UUM and fruit UUM...We swam and talked some more and then had cake and coffee and talked doctors and tests and such for another 3 hours...WHAT A GREAT DAY and a great bunch of sisters. I read so much about people with strong support groups and I know from personal experience what a difference it makes. My heart is so full today and I wanted to share with my air family and other part of my support group.Roxanne, 58, South Carolina2006 Asthma/ PF2008 IPF/ Sarcoidosis/ GerdLady Slipper Orchid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 Roxanne It sounds great. So good to be able to share it with them and be completely open about it. Bet they left thinking well we know she is sick, but she sure seems to be doing ok. But now you can discuss with them and they know more what to expect. > > Good morning all! > > After my last round of doctors visits my sisters (4) wanted to get together to discuss all the details. They want to keep up to date, aware and familiar with my condition and its progression. > > WHAT A WONDERFUL DAY! > > It was the first time they had seen me since I was put on 02. Even though I had told them previously, it was a shock for them to see me wearing the nose hose. They all had a little cry until I told them not to because I was feeling better and that is a good thing! > > We spent the rest of the afternoon in the pool, floating around, talking politics, children, mother, old memories, school, husbands, food , ETC!!! > They all know that my favorite foods are those served cold.....So they fed me; lots of cold salads---dill cucumber chicken salad UUM....tuna capers tomatoes UUUM.....marinated veggies UUM.....pasta UUM and fruit UUM... > > We swam and talked some more and then had cake and coffee and talked doctors and tests and such for another 3 hours...WHAT A GREAT DAY and a great bunch of sisters. I read so much about people with strong support groups and I know from personal experience what a difference it makes. My heart is so full today and I wanted to share with my air family and other part of my support group. > > > > Roxanne, 58, South Carolina > 2006 Asthma/ PF > 2008 IPF/ Sarcoidosis/Gerd > Lady Slipper Orchid > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 thanks , the weaning off was okayed by my lung doc, actually he brought it up. so iam assuming its okay . he did say don't push it and i always keep my freestyle on me and my pulse ox on me. My heart doc said my right was now working as well as my left side of my heart. i have read that your heart resolved itself so it seems mine is doing the same. I faithfully follow docs orders about sodium exercise and liquid so i am hoping these are changing things.have a great weekend in your part of the world ,which as we drove through on a trip, it is pretty. i live in Chicago and will not fly ever so we drive. sharon p ph 2008 From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: Pool PartyTo: Breathe-Support@ yahoogroups. comDate: Sunday, August 31, 2008, 9:21 AM Roxanne, That sounds like an awful lot of fun! I'm so happy you got to spend time with your sisters....there' s nothing like family is there. As you know we just had a big party for my parents a couple of weeks ago and one of the best parts for me was getting to spend time with my siblings, my two wonderful sisters and even my two somewhat dopey brothers. (I'm kidding, I love them both to death!) You got lots of yummy eating done too didn't you? Yummy but it sounds healthy too! Bonus!! I've forgotten Roxanne...where in South Carolina are you? Maybe sometime we could get to meet! I'm in Durham NC but I'm going to Florida in a couple of weeks to visit Peggy and will be driving down 95 through eastern SC. Beth Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Pool Party Good morning all!After my last round of doctors visits my sisters (4) wanted to get together to discuss all the details. They want to keep up to date, aware and familiar with my condition and its progression.WHAT A WONDERFUL DAY! It was the first time they had seen me since I was put on 02. Even though I had told them previously, it was a shock for them to see me wearing the nose hose. They all had a little cry until I told them not to because I was feeling better and that is a good thing! We spent the rest of the afternoon in the pool, floating around, talking politics, children, mother, old memories, school, husbands, food , ETC!!!They all know that my favorite foods are those served cold.....So they fed me; lots of cold salads---dill cucumber chicken salad UUM....tuna capers tomatoes UUUM.....marinated veggies UUM.....pasta UUM and fruit UUM...We swam and talked some more and then had cake and coffee and talked doctors and tests and such for another 3 hours...WHAT A GREAT DAY and a great bunch of sisters. I read so much about people with strong support groups and I know from personal experience what a difference it makes. My heart is so full today and I wanted to share with my air family and other part of my support group.Roxanne, 58, South Carolina2006 Asthma/ PF2008 IPF/ Sarcoidosis/ GerdLady Slipper Orchid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 good morning i never did like the taste of coffee, so, i never devoloped the habit, but, lately, just the smell of freshly brewed coffee causes a sever irritation in my lungs, cough and very short of breath almost to the piont of passing out (if exposed long enough) untill i get away from the sourse and sit down and in about 5 mins. i'm ok. usually (and thankfully) it takes a glass of wine (or 2) to help me relax. ken Pool Party Good morning all!After my last round of doctors visits my sisters (4) wanted to get together to discuss all the details. They want to keep up to date, aware and familiar with my condition and its progression.WHAT A WONDERFUL DAY! It was the first time they had seen me since I was put on 02. Even though I had told them previously, it was a shock for them to see me wearing the nose hose. They all had a little cry until I told them not to because I was feeling better and that is a good thing! We spent the rest of the afternoon in the pool, floating around, talking politics, children, mother, old memories, school, husbands, food , ETC!!!They all know that my favorite foods are those served cold.....So they fed me; lots of cold salads---dill cucumber chicken salad UUM....tuna capers tomatoes UUUM.....marinated veggies UUM.....pasta UUM and fruit UUM...We swam and talked some more and then had cake and coffee and talked doctors and tests and such for another 3 hours...WHAT A GREAT DAY and a great bunch of sisters. I read so much about people with strong support groups and I know from personal experience what a difference it makes. My heart is so full today and I wanted to share with my air family and other part of my support group.Roxanne, 58, South Carolina2006 Asthma/ PF2008 IPF/ Sarcoidosis/ GerdLady Slipper Orchid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2008 Report Share Posted August 31, 2008 I'm excited! Roxanne, 58, South Carolina 2006 Asthma/ PF 2008 IPF/ Sarcoidosis/Gerd Lady Slipper Orchid > > > From: Beth <mbmurtha (AT) yahoo (DOT) com> > > Subject: Re: Pool Party > > To: Breathe-Support@ yahoogroups. com > > Date: Sunday, August 31, 2008, 10:21 AM > > Roxanne, > > That sounds like an awful lot of fun! I'm so > happy > > you got to spend time with your sisters....there' > s > > nothing like family is there. As you know we just > had a > > big party for my parents a couple of weeks ago and one > of > > the best parts for me was getting to spend time with > my > > siblings, my two wonderful sisters and even my two > somewhat > > dopey brothers. (I'm kidding, I love them both to > > death!) > > You got lots of yummy eating done too didn't > you? > > Yummy but it sounds healthy too! Bonus!! > > I've forgotten Roxanne...where in South Carolina > are > > you? Maybe sometime we could get to meet! I'm > in > > Durham NC but I'm going to Florida in a couple of > weeks > > to visit Peggy and will be driving down 95 through > eastern > > SC. > > > > Beth > > Age 48 Fibrotic NSIP 06/06 UCTD 07/08 > > > > Change everything. Love and Forgive > > > > > > > > > > > > Pool Party > > > > > > Good morning all! > > > > After my last round of doctors visits my sisters (4) > wanted > > to get together to discuss all the details. They want > to > > keep up to date, aware and familiar with my condition > and > > its progression. > > > > WHAT A WONDERFUL DAY! > > > > It was the first time they had seen me since I was put > on > > 02. Even though I had told them previously, it was a > shock > > for them to see me wearing the nose hose. They all had > a > > little cry until I told them not to because I was > feeling > > better and that is a good thing! > > > > We spent the rest of the afternoon in the pool, > floating > > around, talking politics, children, mother, old > memories, > > school, husbands, food , ETC!!! > > They all know that my favorite foods are those served > > cold.....So they fed me; lots of cold salads---dill > cucumber > > chicken salad UUM....tuna capers tomatoes > UUUM.....marinated > > veggies UUM.....pasta UUM and fruit UUM... > > > > We swam and talked some more and then had cake and > coffee > > and talked doctors and tests and such for another 3 > > hours...WHAT A GREAT DAY and a great bunch of sisters. > I > > read so much about people with strong support groups > and I > > know from personal experience what a difference it > makes. My > > heart is so full today and I wanted to share with my > air > > family and other part of my support group. > > > > Roxanne, 58, South Carolina > > 2006 Asthma/ PF > > 2008 IPF/ Sarcoidosis/ Gerd > > Lady Slipper Orchid Quote Link to comment Share on other sites More sharing options...
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