|
Post by SpringSummers on Jan 22, 2011 14:53:05 GMT -5
Well, if I was even considering waffling (re treatment) before yesterday's breathing tests settled that: Had pfts (pulmo function tests) yesterday to get a baseline. Unfortunately the tests showed a rather dramatic additional drop from the previous test, just back in Sept. (4 tests in a row over the past year have shown decline -- sort of the reason we were exploring options to begin with) so we are both really glad we made the trip to Houston and a plan for treatment is being put in place. It makes the decision much more obvious and the question of any side effects less important. Now a lot more is riding on this being effective. At the rate my test values are dropping I"ll be in lung transplant territory in another 2-3 years. What is so weird is that to meet me on the street even people who have known me for 20 years wouldn't even think I was sick. Sorry to be a downer and I still feel like I am a very fortunate person in my life -- but just a bit more nervous than I was. And anxious to start treatment. You have lived with the uncertainity of this scary, potentially fatal disease most of your adult life - while dealing with its up and down physical effects and raising 3 children. Kudos to you. Now tests reveal lessening lung function, and you are facing difficult, not-guaranteed-to-work treatment, or a possible lung transplant (!!) in a relatively short time. You are not a downer at all. You have rarely mentioned this issue on the board, despite living with it every day. You have not given up or wallowed in self-pity. You have focused on the postive in your life, and have handled this with a great deal of grace and strength. Please keep us informed, never worry you are "burdening" us, and know we are here for you! Will be sending the S'cubie vibes.
|
|
|
Post by SpringSummers on Jan 22, 2011 15:00:13 GMT -5
Had a wake up puking in the middle of the night episode last night, first in years. Feel as if I've been washed in boiling water and left out th freeze dry. Julia, and so I am punished for not running errands yesterday by having to do them today when I feel all weak-like. This sound exactly like what happened to me. I slept most of the day, that first day. This bug is definitely going around, here in SE Ohio - I picked it up in Dayton (SW Ohio), but several of my coworkers and their children seemed to have the same thing. If it is the same bug, your first day is definitely the worst, for nausea and weakness. After that, your energy returns mostly to normal, but the nausea lingers for . . . well, I don't know how long yet, cause I'm in my 5th day, and it is still hanging around . . .
|
|
|
Post by Sue on Jan 22, 2011 15:06:22 GMT -5
Well, if I was even considering waffling (re treatment) before yesterday's breathing tests settled that: Had pfts (pulmo function tests) yesterday to get a baseline. Unfortunately the tests showed a rather dramatic additional drop from the previous test, just back in Sept. (4 tests in a row over the past year have shown decline -- sort of the reason we were exploring options to begin with) so we are both really glad we made the trip to Houston and a plan for treatment is being put in place. It makes the decision much more obvious and the question of any side effects less important. Now a lot more is riding on this being effective. At the rate my test values are dropping I"ll be in lung transplant territory in another 2-3 years. What is so weird is that to meet me on the street even people who have known me for 20 years wouldn't even think I was sick. Sorry to be a downer and I still feel like I am a very fortunate person in my life -- but just a bit more nervous than I was. And anxious to start treatment. it is a living-in-the-future marvel the number of medical options that keep getting invented. hope they work real good. Exactly. Even 2 or 3 years ago this treatment wasn't an option. So I'm quite grateful for that.
|
|
|
Post by Sue on Jan 22, 2011 15:11:16 GMT -5
Well, if I was even considering waffling (re treatment) before yesterday's breathing tests settled that: Had pfts (pulmo function tests) yesterday to get a baseline. Unfortunately the tests showed a rather dramatic additional drop from the previous test, just back in Sept. (4 tests in a row over the past year have shown decline -- sort of the reason we were exploring options to begin with) so we are both really glad we made the trip to Houston and a plan for treatment is being put in place. It makes the decision much more obvious and the question of any side effects less important. Now a lot more is riding on this being effective. At the rate my test values are dropping I"ll be in lung transplant territory in another 2-3 years. What is so weird is that to meet me on the street even people who have known me for 20 years wouldn't even think I was sick. Sorry to be a downer and I still feel like I am a very fortunate person in my life -- but just a bit more nervous than I was. And anxious to start treatment. You have lived with the uncertainity of this scary, potentially fatal disease most of your adult life - while dealing with its up and down physical effects and raising 3 children. Kudos to you. Now tests reveal lessening lung function, and you are facing difficult, not-guaranteed-to-work treatment, or a possible lung transplant (!!) in a relatively short time. You are not a downer at all. You have rarely mentioned this issue on the board, despite living with it every day. You have not given up or wallowed in self-pity. You have focused on the postive in your life, and have handled this with a great deal of grace and strength. Please keep us informed, never worry you are "burdening" us, and know we are here for you! Will be sending the S'cubie vibes. Thanks.
|
|
|
Post by Sue on Jan 22, 2011 15:11:55 GMT -5
From my SIL:
Dear God,
My prayer for 2011 is for a fat bank account & a thin body. Please don't mix these up like you did last year.
(A much needed laugh.)
|
|
|
Post by SpringSummers on Jan 22, 2011 15:41:33 GMT -5
From my SIL: Dear God,
My prayer for 2011 is for a fat bank account & a thin body. Please don't mix these up like you did last year.
(A much needed laugh.) Good one.
|
|
|
Post by Julia, wrought iron-y on Jan 22, 2011 16:02:07 GMT -5
it is a living-in-the-future marvel the number of medical options that keep getting invented. hope they work real good. Exactly. Even 2 or 3 years ago this treatment wasn't an option. So I'm quite grateful for that. I am grateful it's a possibility for you; your illness is something too big and scary for me to wrap my head around, most times. Julia, thinking of you constantly, though.
|
|
|
Post by Julia, wrought iron-y on Jan 22, 2011 16:04:26 GMT -5
Had a wake up puking in the middle of the night episode last night, first in years. Feel as if I've been washed in boiling water and left out th freeze dry. Julia, and so I am punished for not running errands yesterday by having to do them today when I feel all weak-like. This sound exactly like what happened to me. I slept most of the day, that first day. This bug is definitely going around, here in SE Ohio - I picked it up in Dayton (SW Ohio), but several of my coworkers and their children seemed to have the same thing. If it is the same bug, your first day is definitely the worst, for nausea and weakness. After that, your energy returns mostly to normal, but the nausea lingers for . . . well, I don't know how long yet, cause I'm in my 5th day, and it is still hanging around . . . I don't think this is anything contageous; it has all the signs of abdominal migraine. I'm hideously dehydrated, though, and my BG is scary high- for me, I mean, 258mg/dl; I was talking to a friend last night whose sister routinely goes 550mg/dl or higher, I can't imagine. Julia, being diabetic makes this even more fun, as I can't not eat without screwing things up for months.
|
|
|
Post by S'ewing S'cubie on Jan 22, 2011 17:14:25 GMT -5
Well, if I was even considering waffling (re treatment) before yesterday's breathing tests settled that: Had pfts (pulmo function tests) yesterday to get a baseline. Unfortunately the tests showed a rather dramatic additional drop from the previous test, just back in Sept. (4 tests in a row over the past year have shown decline -- sort of the reason we were exploring options to begin with) so we are both really glad we made the trip to Houston and a plan for treatment is being put in place. It makes the decision much more obvious and the question of any side effects less important. Now a lot more is riding on this being effective. At the rate my test values are dropping I"ll be in lung transplant territory in another 2-3 years. What is so weird is that to meet me on the street even people who have known me for 20 years wouldn't even think I was sick. Sorry to be a downer and I still feel like I am a very fortunate person in my life -- but just a bit more nervous than I was. And anxious to start treatment. Very sorry to hear of the test results, but so glad you did make the trip and didn't postpone it. Chemo is NO fun, but the anticipated result is still worth it. I'm right there in your cheering section!
|
|
|
Post by S'ewing S'cubie on Jan 22, 2011 17:16:05 GMT -5
Well, if I was even considering waffling (re treatment) before yesterday's breathing tests settled that: Had pfts (pulmo function tests) yesterday to get a baseline. Unfortunately the tests showed a rather dramatic additional drop from the previous test, just back in Sept. (4 tests in a row over the past year have shown decline -- sort of the reason we were exploring options to begin with) so we are both really glad we made the trip to Houston and a plan for treatment is being put in place. It makes the decision much more obvious and the question of any side effects less important. Now a lot more is riding on this being effective. At the rate my test values are dropping I"ll be in lung transplant territory in another 2-3 years. What is so weird is that to meet me on the street even people who have known me for 20 years wouldn't even think I was sick. Sorry to be a downer and I still feel like I am a very fortunate person in my life -- but just a bit more nervous than I was. And anxious to start treatment. You have lived with the uncertainity of this scary, potentially fatal disease most of your adult life - while dealing with its up and down physical effects and raising 3 children. Kudos to you. Now tests reveal lessening lung function, and you are facing difficult, not-guaranteed-to-work treatment, or a possible lung transplant (!!) in a relatively short time. You are not a downer at all. You have rarely mentioned this issue on the board, despite living with it every day. You have not given up or wallowed in self-pity. You have focused on the postive in your life, and have handled this with a great deal of grace and strength. Please keep us informed, never worry you are "burdening" us, and know we are here for you! Will be sending the S'cubie vibes. What she said--much better than I did.
|
|
|
Post by Sue on Jan 22, 2011 18:39:40 GMT -5
You guys are all the best. Thanks so much for your support.
I know some of you struggle with your own aches and pains and chronic diseases that I would want no part of.
But we will all soldier on together and it's way easier with help from one another.
|
|
|
Post by Sue on Jan 22, 2011 18:41:51 GMT -5
My post is there but the front page only shows Diane's.
And I actually got this message from my computer:
This page took too long to generate and has been stopped. A log of this error has been reported to ProBoards Support.
So obviously this thing where people post but it doesn't show on the front page is a ProBoards issue if a TP wants to report it to them.
|
|
|
Post by Anne, Old S'cubie Cat on Jan 22, 2011 19:29:58 GMT -5
Well, if I was even considering waffling (re treatment) before yesterday's breathing tests settled that: Had pfts (pulmo function tests) yesterday to get a baseline. Unfortunately the tests showed a rather dramatic additional drop from the previous test, just back in Sept. (4 tests in a row over the past year have shown decline -- sort of the reason we were exploring options to begin with) so we are both really glad we made the trip to Houston and a plan for treatment is being put in place. It makes the decision much more obvious and the question of any side effects less important. Now a lot more is riding on this being effective. At the rate my test values are dropping I"ll be in lung transplant territory in another 2-3 years. What is so weird is that to meet me on the street even people who have known me for 20 years wouldn't even think I was sick. Sorry to be a downer and I still feel like I am a very fortunate person in my life -- but just a bit more nervous than I was. And anxious to start treatment. You aren't a downer, you're right to be nervous, I'll up the good vibes, and
|
|
|
Post by Anne, Old S'cubie Cat on Jan 22, 2011 19:41:42 GMT -5
I am a Bad Daughter and a Bad Sister. This afternoon during the daily (M-F) call from my mother, I lost it. I told Aged Mum, politely, that it's time she called Ratbag and BiL and leaned on them to visit more often. I also told her that I was tired of hearing what a saint BiL is for driving up once in a while, and for making vague promises of visiting, and even committing to driving her to appointments, which he then breaks, and that I am tired of no matter how much I do, it's never good enough, and furthermore, that I think Ratbag is faking most of her "issues". If she's well enough to stay up all night getting into flame wars on the internet, she can damn well call her mother once a month. Bipolar my . I also reminded her, politely, that while I had to support myself most of my adult life (until six months after Emily was born, when I quit to raise the baby), Ratbag never has - she went straight from something like six years of flapping around in college paid for by proud parents (who couldn't be arsed to go to my high school graduation, so I didn't either) to living with and then married to BiL. She's never had a paying job, just a few volunteer gigs at animal shelters, which she always left because she "couldn't deal with the politics". She says she agrees with me, and that she thinks I do enough *insert hollow laugh from me here*. We. Shall. See. So tomorrow I am, again, giving up my morning out (because Himself has a mythie meeting Sunday afternoon, and one can't expect him to sacrifice his social life) to, with the Husband, dance attendance on my mother, as is our monthly custom. I do have a bit of grocery shopping for Aged Mum, so if I actually get enough any sleep tonight, I might sneak out to a coffee shop for twenty minutes tomorrow morning before we leave. If I'm very lucky. Thus endeth the rant. Sunday we have to drive to Westminster. Kitty needs some art supplies (the ones we don't already have around the house) for her drawing class. Boo hoo, we have to go to Art Supply Warehouse. Don't throw me in that briar patch... The most amusing thing is that Kitty said she had a list, I said we'd go to ASW on Sunday morning, and at the bottom of the list, the first place the teacher recommended is ASW. Hee. Anne, evil bitch monster of death and proud of it If that's being a bad daughter/sister then sign me up! Personally, I think it's LONG overdue. Yay, you for finally speaking up! And on my end, my bank's security company has just called me to say that my check card has been compromised. There have been transactions to, among other things, Olympic Air. Good on them for being on the lookout. on the bustards who stole my number. Moreover, I think I know who did it. I ate at my favorite Japanese lunch place yesterday. They've lately been hiring some very questionable wait staff. The last time one solicited my business for his new, start-up electric company. Now this. And just when I needed to go shopping. Now I'm back to writing checks again. Grr! Well at least Mr. Amex and Dear Little Discover are still working. I wanted to book my air fare to California for PaleyFest in March some time today. Well, we'll have to wait and see if it did any good. At least she stopped going on about Saintly BiL, for now anyway. The visit was okay; I got her checkbook up to date and balanced (I may be one of the few people in the universe who enjoys number crunching), cleared a drawer in the living room of old games and other junk (including a partial pack of Nicorette that had to be twenty years old, from when my dad quit smoking ) and put all of her art supplies in, which cleared the ancestral rocking chair so people can sit on it, and then helped Paul and Good Neighbor Michael with the massive reorg of the back deck. They did a huge amount of moving and sorting and making piles of things to throw away (my dad was something of a packrat, and don't even ask about the evidence of real rodents ). Now both French doors could be opened in an emergency so my mom could get out with her walker or wheelchair. All we need now is another board over the slats and a ramp, and Michael has the one and has offered to build the other, so she can go out and sit in the garden of an afternoon. Then I put the cat nests back together. The cats will probably complain for a day or two because everything is in a different place, and the bedding has been aired, but that's just too bad. Also I managed to fit in a small yard sale loop and my coffeeshop breakfast before we left, because I had to do my mom's marketing in the car anyway. Besides, I was awakened at 3AM by the patter of little feet on the roof again (raccoons, we think) and the cats expect to be fed on time, so I was up early anyway. In other matters, I'm glad your bank caught the transactions so quickly. That is not fun.
|
|
|
Post by Anne, Old S'cubie Cat on Jan 22, 2011 19:42:46 GMT -5
Had a wake up puking in the middle of the night episode last night, first in years. Feel as if I've been washed in boiling water and left out th freeze dry. Julia, and so I am punished for not running errands yesterday by having to do them today when I feel all weak-like. and that it's a one-of and not the harbinger of flu.
|
|