Sunni

May 18, 2004

Hi Sunni,

Thank you for all that you have shared. I do have a nebulizer but I

don't use it anymore as to the fact that it causes me to go into a

coughing frenzy which then in turn makes me either vomit or lose

breath. I have several inhalers, atrovent, serevent, albuterol, etc.

etc. They don't do much - my chief complaint is the coughing well,

the wheezing which in turn brings on the coughing.

I do have scaring in my lungs from the Sarcoidosis but as the doc

says, there is no change from all the issues I already had. I was

dx'd with Sarcoidosis 11/99 but it is still questionable if it is

actually Sarcoid or lupus since they mimic one another, guess it

doesn't matter the course of treatment is the same.

I do have the lovely title of pulmonary fibrosis but as the doc says

its the same as the Sarcoid so who the heck knows.

What do you find to be the easiest way to get sleep? I have tried the

good ol' pillow wedge - doesn't help. I have tried the recliner -

hurts the back where I had my spinal fusion so therefore the pain

turns around and keeps me awake. The docs tell me to get an

adjustable bed, in which Mike and I do intend to get because I can

write it off on my taxes but I need roof before I can get a bed so

the bed has been put off until next year. I ploop myself up on the

couch and lean over the the back of it and try to dose off that way

but it ends up hurting my fusion so again the pain wakes me up. I am

at this point so desperate to get some sleep. BTW I do have asthma as

well. Any advice or suggestions would be of great appreciation.

Take care hon and I look forward to hearing from you.

Hugs

Deanna

> > Well... As you can see I was not hospitalized.

> >

> > Went to my appointment today with the lung dr. Did all those not

so

> > fun breathing tests and of course passed them as usual. (well I

> > should say there was no change from all the previous tests)

> >

> > Went in talked with the doctor he says - I don't know what to

tell

> > you, all your tests we have done in the past 3 weeks prove to

show

> us

> > your fine, but from what your describing sounds all to be heart

> > related but even all the heart tests we have performed are

showing

> no

> > change. I was like - Look, my quality of life sucks, I can't

> breath,

> > I can't lay down without going into a coughing frenzy which then

> > leads into me either vomitting or losing my breath and turning

> blue.

> > SOMETHING is NOT right!

> > He told me to get up on the table and lay down so he could hear

> what

> > I was describing and he finally heard it. Then as I went into a

> > coughing frenzy he helped me up and said hang on a second. He

comes

> > back and says " we're going to do a bronchoscopy on you and see if

> > there is some sort of obstruction going on in there " As much as I

> > hate that test I was like fine. So went and did the god awful

test

> > and he says well good news and bad news - the good news as I have

> > been telling you all along is that you don't have emphasema, you

> > don't have lung cancer, the bad news is I don't know what is

> causing

> > this but call me Friday and hopefully I will have some more

> answers.

> > I just said you know this is sad when I would rather hear you

tell

> me

> > I had cancer or emphasema so that at least I knew what the heck

was

> > going on, what was causing all this -- but NO - again no answer -

> He

> > even brought in 2 other lung docs, they went thru all the tests,

> > listened to me, and all said the same damn thing.

> > So I am screwed...

> >

> > My throat and nose hurt from the novacaine and scope so I am

going

> to

> > go back to the couch and get in my sitting position and try to

get

> > some much needed rest. I just wanted to update those of you who

> were

> > intrested.

> >

> > Take care all and have a good night.

> >

> > Hugs

> > Deanna

June 9, 2004

Hi

Thanks for your kind words. The doc that I was referring to was my

own doctor. I am dealing with pericarditis right now and he was

telling me to not overdo it as I just came out of the hospital

myself. As for my mom's doc, he hasn't given me any specific

instructions on her care as yet as we still don't know IF she can do

anything at all yet. If and when we take her home, there will be

others in PT to help me. She is a strong lady and will do everything

she can on her own, whether I try to help or not. You are right, of

course, that you have to do it yourself to recover. She is a retired

RN so she is aware it will be a long haul, but we are both prepared

to take it on to get her well, if God sees that to be the case.

I got some good sleep last night and my meds appear to be working. I

tend to react to steroids so it's always a toss up if I can get

through a round of them.

It does appear God is going to cut me some slack this time and allow

these to take care of my inflammation so I can help mom.\

Again, thanks to you all for your support!

Hope everyone is feeling well today!

Sunni

> Granted I wasn't there, but I think maybe the dr is just telling

you not to try to do everything for your mom 'cause then seh won't

try to do it for herself. Try to let her do as much as she can for

herself. I know you love her and want to help her, but if you don't

let her try for herself, that's not helping her in the long run. It's

going to be a slow and painful ordeal, but with your love she will

get through this, and so won't you.

>

June 9, 2004