Update

[Guest guest]

hey m,

aren't you glad i mentioned the cocconut to you now? did you raid

your son's halloween bag or what? hee, hee.

hopefully you feel better soon.

lumps are always worthy of being checked out....imho.

jeff

>

> Hi All,

>

> Was hoping I could write today and tell everyone I'm getting

> better!! Yesterday, I really thought so . . . it had been almost a

> whole week without new lumps and was going to attribute it to

Almond

> Joy bars =) But last night, one of my lumps kept me awake . . .

and

> then this morning the malaise truck hit =( I imagine I'll find

> myself a new lump or two by tomorrow. I do think coconut is

helping

> though, unless the EN is just slowly going away. I don't have

virgin

> coconut oil, but have bought shredded coconut and add that to my

> oatmeal. It seems like the onset of new lumps are spaced out a bit

> further . . . so I'm really hoping it's one or the other.

>

> New concern today with one of my sons who decided today to show me

a

> lump in his armpit that's been there " since forever, " says he. I

> know some of our lymph nodes are there, and it feels like one . . .

> but it doesn't/hasn't bothered him all this time, except when

someone

> goes poking around it. I'll be bringing him in to the doc

> tomorrow . . . and I won't leave with a " eh, he's just got some

kind

> of illness coming on, don't worry about it. " Painful, red nodes

mean

> something's coming on. Non-painful, swollen nodes that have been

> around for a long time mean something much different and I'm not

> taking any chances!! A friend of mine had one in his groin . . .

> didn't bother him, so he didn't go to the doc . . . when family

> finally convinced him, it was too late . . . he died two months

> later, his body completely filled with cancer. Not going there

with

> my son!!

>

> I wonder if this new worry placed before me this morning is what

has

> brought on this sudden malaise?? If the lump hadn't kept me awake

> last night, I'd have to side with the 'stress' factor . . . but it

> did . . . so I don't know. I'll let you all know . . . and I don't

> have any test results yet as I haven't had them done yet, my bad!

> Ended up being gone most of the weekend, so I couldn't do the 24-

hour

> catch and the ensuing bloodwork to follow. I'll be doing the 24-

hour

> catch tomorrow and the bloodwork Thursday when I bring that happy

jug

> to the lab =) So I should have some news next week some time. Oh,

> here's a tidbit: I had an attack of the itchy eyes this

> morning . . . that could be related to this malaise, right? SO

MANY

> VARIABLES!!!

>

> Shins up!

> M

[Guest guest]

Thanks, Deb . . . I hope I'm just being paranoid about my son . . .

but when it comes to our babies, I think that's ok!

My GYN gave me Bextra a year ago, or so, after my operation to remove

a cyst on my ovary. I continued to have pain AFTER the surgery,

worse pain, really, which doesn't make sense, but . . . I'm not sure

the bextra worked for me. My insurance wouldn't pay for it, as it

was pretty new and pretty strong stuff; they figured she could have

given me something else (idiots.) So, at $5/pill, I only bought 5 at

a time and took them BEFORE my period, when the pain was worse . . .

I think it hurt more during ovulation. As I said, I still had

pain . . . I tried it twice, with not too much relief. I think it

might be one of those types of pills that you have to take for a

while before it kicks in and does what it's supposed to do, although

my GYN was taking it herself during her own periods! So don't quote

me on that.

That's all I know about Bextra . . . my GYN loves the stuff =)

Take care!

M

>

> Hi!

>

> I haven't really written about me in a while... I am really having

> a hard time lately. More and more bumps every week... fever, a

new

> pain in my right side, digestive issues... you know how it goes...

> I actually broke down at my annual GYN appointment today. The

> doctor felt so bad that he gave me some medicine. I haven't really

> taken much medicine in the past. It is Bextra (Valdecoxib 20mg) -

> any experience out there with this? The doctor described it as

> being similar to Motrin but said it would last longer. I tried to

> search the site but I don't think I did it right - I think it only

> searched a few files.

>

> My big problem is that I just moved to St. Louis and I made an

> appointment way back in August to see a Rheumatologist at one of

the

> teaching hospitals. The first appointment they could give me is

> Dec. 16th!!!!! I am really having a hard time making it that

long.

> Four Months!!! When I took the appointment I thought this will all

> be gone by then but at this rate it sure won't!

>

> Anyway - that is it for me.. sorry to hear about your new bumps M -

> and about your son. I will be praying it is nothing!!!

> Love,

> Deb C.

[Guest guest]

LOL . . . No, I didn't raid his candy bag . . . but it was very fun

to actually BUY candy!! I haven't done that in soooo many years! I

never really liked Almond Joys . . . but at this point, I think I

could suffer with them =) It's a nice touch in my oatmeal every

morning too . . . along with some sliced almonds . . .

ymmmmm. 'Course, I'll probably gain another 20 lbs, which really

stinks, but if I can get rid of the EN, I can start working it all

off!

Thanks for the smile!

M

> >

> > Hi All,

> >

> > Was hoping I could write today and tell everyone I'm getting

> > better!! Yesterday, I really thought so . . . it had been almost

a

> > whole week without new lumps and was going to attribute it to

> Almond

> > Joy bars =) But last night, one of my lumps kept me awake . . .

> and

> > then this morning the malaise truck hit =( I imagine I'll find

> > myself a new lump or two by tomorrow. I do think coconut is

> helping

> > though, unless the EN is just slowly going away. I don't have

> virgin

> > coconut oil, but have bought shredded coconut and add that to my

> > oatmeal. It seems like the onset of new lumps are spaced out a

bit

> > further . . . so I'm really hoping it's one or the other.

> >

> > New concern today with one of my sons who decided today to show

me

> a

> > lump in his armpit that's been there " since forever, " says he. I

> > know some of our lymph nodes are there, and it feels like

one . . .

> > but it doesn't/hasn't bothered him all this time, except when

> someone

> > goes poking around it. I'll be bringing him in to the doc

> > tomorrow . . . and I won't leave with a " eh, he's just got some

> kind

> > of illness coming on, don't worry about it. " Painful, red nodes

> mean

> > something's coming on. Non-painful, swollen nodes that have been

> > around for a long time mean something much different and I'm not

> > taking any chances!! A friend of mine had one in his groin . . .

> > didn't bother him, so he didn't go to the doc . . . when family

> > finally convinced him, it was too late . . . he died two months

> > later, his body completely filled with cancer. Not going there

> with

> > my son!!

> >

> > I wonder if this new worry placed before me this morning is what

> has

> > brought on this sudden malaise?? If the lump hadn't kept me

awake

> > last night, I'd have to side with the 'stress' factor . . . but

it

> > did . . . so I don't know. I'll let you all know . . . and I

don't

> > have any test results yet as I haven't had them done yet, my

bad!

> > Ended up being gone most of the weekend, so I couldn't do the 24-

> hour

> > catch and the ensuing bloodwork to follow. I'll be doing the 24-

> hour

> > catch tomorrow and the bloodwork Thursday when I bring that happy

> jug

> > to the lab =) So I should have some news next week some time.

Oh,

> > here's a tidbit: I had an attack of the itchy eyes this

> > morning . . . that could be related to this malaise, right? SO

> MANY

> > VARIABLES!!!

> >

> > Shins up!

> > M

[Guest guest]

Hi all. I am so sorry I didn't post yesterday. I really thought

that I had. If they weren't messing with me I was pretty much

sleeping.

Boy do I have a lot to share. First my heart is absolutely.

beautiful. The doctors said that all of the tests were absolutely

textbook. There is no enlargement or internal blood pressure

changes. The valves all open and close perfectly and they can find

absolutely no evidence of any kind of blockage or future artery

problems. The docs are amazed. They told me that with the number of

serious asthma attacks and the amount of meds I really should have

enlargement to some degree. The only thing they told me is to pay

attention to my heart rate. It seems to be very fast (wonder why -

albuterol, salumedrol, prednizone, etc...) So I just have to time it

and record the rate when I do my peak flows. I think they just can't

stand for it to be perfect so they are making homework for me!! That

is one major relief for me.

We have also figured out that at the moment my asthma is the

secondary issue. The primary issue is lung volume. In June we did a

full set of PFT's and although all my numbers were bad, the lung

volume was showing at 2.5 liters about half of what was expected.

The docs at that time didn't really worry about it too much because

they saw some minor scarring and a couple of other very mild

abnormalities in the CT's or regular xrays that would explain that

degree of loss. They just figured that it was a temporary thing

caused by muscle fatigue from the constant asthma exaserbations

(spelling?)

Now my lungs are only holding a little less that one liter. Also, my

FEV1 #'s and all those other #'s are at about 20% of expected. So,

there was definitely some kind of permanent muscle or smooth wall

damage in the lower lobes of both of my lungs in May. As to what

this means for long term, we still don't know. I am scheduled to

have another interview with National Jewish next Tuesday to set the

actual dates of travel and service with them. In the meantime, my

doc is calling them to let them know what they have found. My doc is

really hoping to get me in to them in the next week or two. I am

trying to talk him into letting me go home this weekend on high

steroid dosages. He is really very unsettled. Even though he thinks

that they have gotten me to a point where there is really not much

else they can do. Same story as last time. The only difference

between staying in the hospital and being at home is the maximum

steroid dosage I can take, and he is reluctant to take me off of the

steroids. And boy am I having some extra side effects this time! My

peak flows are still sitting in the 170-180 range for the 3rd day.

We don't expect them to get much better. So I have talked him into

slowly redcing the steroids over the next two days and see how I do.

I am only 15 minutes from the hospital (during high traffic) so I can

get here very quickly if need be. So keep praying. I want to go

home at least long enough to sleep in my own bed for a couple of days

and catch up on some sleep and pack a back for National Jewish. Lord

knows I don't want my husband doing that! LOL My spirits are high

and I am doing everything I can to drive all the nurses nuts by

walking the halls and refusing to use my call button (one nurse said

i am like a ghost in the halls at night!! LOL) I try to walk as

much as I can. Although, I am in a VIP suite this time and have

plenty of room (a teeny bath, bedroom, and sitting room) if I have to

stay. They won't let me go get a pedicure though. Isn't that mean?

I promise I will send a quick post later today! Love you all. (P.S.

Alana and Cheryl I sent you both a private email a couple of days

ago. You haven't responded, did you get it?)

Madline