Update

[Guest guest]

Hi

everyone,

Thought

I would drop a note to let you all know I am hanging in there.

I hope

this finds all ready for Christmas and not stressing too much,

Well

been having one of my major migraines the last couple of weeks (what else is

new)

I always

get nervous having a migraine this time of year because back in 1999 this time

of year I had my first migraine that led into my first stroke – I don’t

remember much from then but I remember the migraine being just like this one I

have now, so whenever I have my migraine this time of year I always get nervous.

Saw Rheumy

yesterday and will see hematologist today. Rheumy says my “sticky blood”

is acting up. I haven’t a clue what the heck he means by that but will

discuss it with hematologist today. I was labeled with APS – aka sticky

blood – aka syndrome back in May of 2001 and learned yesterday all

the different names it has. I noticed there was someone else I believe Staci

but I could be wrong also mentioning syndrome and then of course there

was ’s post and it was just like hmmm how did they know it was

mentioned today… lol

Saw Pulmonologist

last week and got a new label to add to my long list..

Besides having Sarcoidosis and lupus involvement in the lungs (where isn’t

the lupus involvement) he has labeled me with Pulmonary Fibrosis. I tell ya I

just can’t win. I have to go back and have another chest x-ray as well as

a CT Scan of my lungs in February. Oh lucky me =)

Mike got his new AFO Brace and it is so much nicer and

so not noticeable than the other brace he was wearing. He even drove the car

around the block with it so hopefully wont be long till I can send his butt

back to work J I

even made him drive himself to physical therapy yesterday (Cuz I just hate

going and just sitting there) He isn’t ready for the main main roads yet

because there are muscles he hasn’t used since August 15th and

just driving down the road to physical therapy took a lot out of him –

But I will get him back out there soon!!! I miss his paychecks – Gotta love

a truckers paychecks J

All

his docs are saying he will be out a year but I am going to push him to be back

to work by February – March at the latest…..

Well

gotta go wake up and have my coffee and then get ready for the hematologist.

Everyone

have a great day and I should be back on later to see how your

all doing.

Much

Love,

Deanna

LUPUS

Serenity Prayer...

Lord, grant me the

serenity to accept the things I cannot change, the courage to change the things

I can, and the wisdom to hide the bodies of doctors I shot when they said,

You're perfectly healthy, it's all in your head "

[Guest guest]

Bless your heart, Joyce!! can u ever get a break? I wish I could send you a big one. You so deserve it!! I hope the doc can get your appointment moved up quickly. Please know my thoughts and prayers are with you.CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: UpdateTo: Breathe-Support Date: Wednesday, May 14, 2008, 7:35 AM

Hi All,

I just wanted you all to know that I am getting a little stronger every day. I have stopped bleeding from my chest catheter (which worried me to death). Flolan seems to be working, thank God.

I mentioned to you all about the rash, think I called them lesions. They look like splotches of little blisters and they are bright red. Well, I have about a million now. My back is covered. Some larger than a quarter. I look like I have the black plague!!!! The pulmo looked at them when I was there a week ago....said it looked like Eczema. His secretary made me an appt. with a dermatologist but not until June 5. Well, I have so many new splotches since then. Last night I e-mailed the doc to tell him that I had read online that Eczema rash was a side effect of Flolan (if he knew this last week, he didn't say it) so.....this morning he e-mailed back to say he is sending out a steroid cream and that he is calling to see if he can get my appt with the derm moved up. My big worry is that the spots are beginning to come up underneath the sterile

bandage. I can only change is once a week so how am I to treat the spots under there with a topical cream???

The splotches are spreading onto my arms and legs now ..... and my head even itches. I just look more and more beautiful every day. My face is continually red from the flushing. I look so healthy...ha! ha! People keep telling me how good I am looking. No need for a blusher for me. Lipstick either....I have nice purple lips!

Well, the saga continues and so do I. I continue to thank God for every day. He has pulled me out of the valley of death so many times. I am just thankful for every day.

And, I thank God for all of you.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

[Guest guest]

Joyce,

Eczema is NOT fun! I have had it all of my life! I have had many flairups. I have had some of it act up in the past few weeks. Elildel is a good prescription that is NOT a steroid. I have used so many steroidal ointments and creams that I have no fingerprints on my fingers. I use cetaphil cream or lotion after bathing with Dove Soap for Sensitive Skin. I used to use Oil of Olay Soap for Sensitive Skin but the stores quit carrying it. I liked it the best. I wash my clothes and bedding in All detergent for sensitive skin. I have scratched the stuff until I was bleeding. UGH! I try so hard to keep it in control. Joyce, I pray that you are NOT itching!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> Aahahhh Joyce....not more to deal with! You are surely a walking miracle and at least I have known one. There are many on this board but what you have and do deal with is beyond words. > I know you are under good care (right???)> and someone soon will find an answer. > Guess we'll have to call you Queen Spotty now. OMG Joyce, I'm so sorry. What can I say but....DAMNIT!> God Bless you over and over again.> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!> > Update> > > > Hi All, > > I just wanted you all to know that I am getting a little stronger every day. I have stopped bleeding from my chest catheter (which worried me to death). Flolan seems to be working, thank God. > > I mentioned to you all about the rash, think I called them lesions. They look like splotches of little blisters and they are bright red. Well, I have about a million now. My back is covered. Some larger than a quarter. I look like I have the black plague!!!! The pulmo looked at them when I was there a week ago....said it looked like Eczema. His secretary made me an appt. with a dermatologist but not until June 5. Well, I have so many new splotches since then. Last night I e-mailed the doc to tell him that I had read online that Eczema rash was a side effect of Flolan (if he knew this last week, he didn't say it) so.....this morning he e-mailed back to say he is sending out a steroid cream and that he is calling to see if he can get my appt with the derm moved up. My big worry is that the spots are beginning to come up underneath the sterile bandage. I can only change is once a week so how am I to treat the spots under there with a topical cream???> > The splotches are spreading onto my arms and legs now ..... and my head even itches. I just look more and more beautiful every day. My face is continually red from the flushing. I look so healthy...ha! ha! People keep telling me how good I am looking. No need for a blusher for me. Lipstick either....I have nice purple lips! > > Well, the saga continues and so do I. I continue to thank God for every day. He has pulled me out of the valley of death so many times. I am just thankful for every day.> > And, I thank God for all of you.> > Hugs, Joyce D.> > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 > .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>

[Guest guest]

Jane,

Yes, it itches. Some of the places itch worse than others. The doc did not follow through. He did not call a prescription in, nor did he get my appt. moved. Aaargh. My back is just covered.

I just needed one more thing to deal with!!!

I am wondering if they will have to lessen my dosage on the Flolan. They raised it while I was in the hospital this last time and that is when the rash began.

Thanks Jane,

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

> >> > Aahahhh Joyce....not more to deal with! You are surely a walking> miracle and at least I have known one. There are many on this board but> what you have and do deal with is beyond words.> > I know you are under good care (right???)> > and someone soon will find an answer.> > Guess we'll have to call you Queen Spotty now. OMG Joyce, I'm so> sorry. What can I say but....DAMNIT!> > God Bless you over and over again.> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > Don't fret about tomorrow, God is already there!> >> > Update> >> >> >> > Hi All,> >> > I just wanted you all to know that I am getting a little stronger> every day. I have stopped bleeding from my chest catheter (which worried> me to death). Flolan seems to be working, thank God.> >> > I mentioned to you all about the rash, think I called them lesions.> They look like splotches of little blisters and they are bright red.> Well, I have about a million now. My back is covered. Some larger than a> quarter. I look like I have the black plague!!!! The pulmo looked at> them when I was there a week ago....said it looked like Eczema. His> secretary made me an appt. with a dermatologist but not until June 5.> Well, I have so many new splotches since then. Last night I e-mailed the> doc to tell him that I had read online that Eczema rash was a side> effect of Flolan (if he knew this last week, he didn't say it)> so.....this morning he e-mailed back to say he is sending out a steroid> cream and that he is calling to see if he can get my appt with the derm> moved up. My big worry is that the spots are beginning to come up> underneath the sterile bandage. I can only change is once a week so how> am I to treat the spots under there with a topical cream???> >> > The splotches are spreading onto my arms and legs now ..... and my> head even itches. I just look more and more beautiful every day. My face> is continually red from the flushing. I look so healthy...ha! ha! People> keep telling me how good I am looking. No need for a blusher for me.> Lipstick either....I have nice purple lips!> >> > Well, the saga continues and so do I. I continue to thank God for> every day. He has pulled me out of the valley of death so many times. I> am just thankful for every day.> >> > And, I thank God for all of you.> >> > Hugs, Joyce D.> >> > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension> 2008> > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected> for Transplant 2006> > .....I will not forget you. Behold, I have engraved you on the palm of> my hands. Isaiah 49: 15-16> >>

[Guest guest]

Joyce....what do you do when your dr doesn't follow through? You poor thing, you have to be most miserable. DAMNIT!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Update> >> >> >> > Hi All,> >> > I just wanted you all to know that I am getting a little stronger> every day. I have stopped bleeding from my chest catheter (which worried> me to death). Flolan seems to be working, thank God.> >> > I mentioned to you all about the rash, think I called them lesions.> They look like splotches of little blisters and they are bright red.> Well, I have about a million now. My back is covered. Some larger than a> quarter. I look like I have the black plague!!!! The pulmo looked at> them when I was there a week ago....said it looked like Eczema. His> secretary made me an appt. with a dermatologist but not until June 5.> Well, I have so many new splotches since then. Last night I e-mailed the> doc to tell him that I had read online that Eczema rash was a side> effect of Flolan (if he knew this last week, he didn't say it)> so.....this morning he e-mailed back to say he is sending out a steroid> cream and that he is calling to see if he can get my appt with the derm> moved up. My big worry is that the spots are beginning to come up> underneath the sterile bandage. I can only change is once a week so how> am I to treat the spots under there with a topical cream???> >> > The splotches are spreading onto my arms and legs now ..... and my> head even itches. I just look more and more beautiful every day. My face> is continually red from the flushing. I look so healthy...ha! ha! People> keep telling me how good I am looking. No need for a blusher for me.> Lipstick either....I have nice purple lips!> >> > Well, the saga continues and so do I. I continue to thank God for> every day. He has pulled me out of the valley of death so many times. I> am just thankful for every day.> >> > And, I thank God for all of you.> >> > Hugs, Joyce D.> >> > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension> 2008> > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected> for Transplant 2006> > .....I will not forget you. Behold, I have engraved you on the palm of> my hands. Isaiah 49: 15-16> >>

[Guest guest]

Sher,

He called today and he did get my appt with the dermatologist moved up to next Wednesday. Better than June. But, the derm did not want me on steroid cream until he sees me. I will scratch a hole right through my body by next week. Aaargh!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

> > >> > > Aahahhh Joyce....not more to deal with! You are surely a walking> > miracle and at least I have known one. There are many on this board but> > what you have and do deal with is beyond words.> > > I know you are under good care (right???)> > > and someone soon will find an answer.> > > Guess we'll have to call you Queen Spotty now. OMG Joyce, I'm so> > sorry. What can I say but....DAMNIT!> > > God Bless you over and over again.> > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > > Don't fret about tomorrow, God is already there!> > >> > > Update> > >> > >> > >> > > Hi All,> > >> > > I just wanted you all to know that I am getting a little stronger> > every day. I have stopped bleeding from my chest catheter (which worried> > me to death). Flolan seems to be working, thank God.> > >> > > I mentioned to you all about the rash, think I called them lesions.> > They look like splotches of little blisters and they are bright red.> > Well, I have about a million now. My back is covered. Some larger than a> > quarter. I look like I have the black plague!!!! The pulmo looked at> > them when I was there a week ago....said it looked like Eczema. His> > secretary made me an appt. with a dermatologist but not until June 5.> > Well, I have so many new splotches since then. Last night I e-mailed the> > doc to tell him that I had read online that Eczema rash was a side> > effect of Flolan (if he knew this last week, he didn't say it)> > so.....this morning he e-mailed back to say he is sending out a steroid> > cream and that he is calling to see if he can get my appt with the derm> > moved up. My big worry is that the spots are beginning to come up> > underneath the sterile bandage. I can only change is once a week so how> > am I to treat the spots under there with a topical cream???> > >> > > The splotches are spreading onto my arms and legs now ..... and my> > head even itches. I just look more and more beautiful every day. My face> > is continually red from the flushing. I look so healthy...ha! ha! People> > keep telling me how good I am looking. No need for a blusher for me.> > Lipstick either....I have nice purple lips!> > >> > > Well, the saga continues and so do I. I continue to thank God for> > every day. He has pulled me out of the valley of death so many times. I> > am just thankful for every day.> > >> > > And, I thank God for all of you.> > >> > > Hugs, Joyce D.> > >> > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension> > 2008> > > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected> > for Transplant 2006> > > .....I will not forget you. Behold, I have engraved you on the palm of> > my hands. Isaiah 49: 15-16> > >> >>

[Guest guest]

Joyce, I'm dumbfounded that waiting is an option at all!!!! You should get right in someplace for attention..............

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Update> > >> > >> > >> > > Hi All,> > >> > > I just wanted you all to know that I am getting a little stronger> > every day. I have stopped bleeding from my chest catheter (which worried> > me to death). Flolan seems to be working, thank God.> > >> > > I mentioned to you all about the rash, think I called them lesions.> > They look like splotches of little blisters and they are bright red.> > Well, I have about a million now. My back is covered. Some larger than a> > quarter. I look like I have the black plague!!!! The pulmo looked at> > them when I was there a week ago....said it looked like Eczema. His> > secretary made me an appt. with a dermatologist but not until June 5.> > Well, I have so many new splotches since then. Last night I e-mailed the> > doc to tell him that I had read online that Eczema rash was a side> > effect of Flolan (if he knew this last week, he didn't say it)> > so.....this morning he e-mailed back to say he is sending out a steroid> > cream and that he is calling to see if he can get my appt with the derm> > moved up. My big worry is that the spots are beginning to come up> > underneath the sterile bandage. I can only change is once a week so how> > am I to treat the spots under there with a topical cream???> > >> > > The splotches are spreading onto my arms and legs now ..... and my> > head even itches. I just look more and more beautiful every day. My face> > is continually red from the flushing. I look so healthy...ha! ha! People> > keep telling me how good I am looking. No need for a blusher for me.> > Lipstick either....I have nice purple lips!> > >> > > Well, the saga continues and so do I. I continue to thank God for> > every day. He has pulled me out of the valley of death so many times. I> > am just thankful for every day.> > >> > > And, I thank God for all of you.> > >> > > Hugs, Joyce D.> > >> > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension> > 2008> > > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected> > for Transplant 2006> > > .....I will not forget you. Behold, I have engraved you on the palm of> > my hands. Isaiah 49: 15-16> > >> >>

[Guest guest]

Sher,

At least they got it moved to Wednesday. I don't do emergency rooms. Don't like them. I am just so glad this nasty stuff is underneath my clothes so I will not be banned from public places! It looks awful.

I know it is a reaction to the Flolan. So, what is my option here. Itch or die.

My 7 yr old grandaughter was in the bathroom when I was changing into my jammies and saw all the splothes last night. She freaked out. She just felt to sorry for me. Cute.

Have a good weekend.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

> > > >> > > > Aahahhh Joyce....not more to deal with! You are surely a walking> > > miracle and at least I have known one. There are many on this board but> > > what you have and do deal with is beyond words.> > > > I know you are under good care (right???)> > > > and someone soon will find an answer.> > > > Guess we'll have to call you Queen Spotty now. OMG Joyce, I'm so> > > sorry. What can I say but....DAMNIT!> > > > God Bless you over and over again.> > > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > > > Don't fret about tomorrow, God is already there!> > > >> > > > Update> > > >> > > >> > > >> > > > Hi All,> > > >> > > > I just wanted you all to know that I am getting a little stronger> > > every day. I have stopped bleeding from my chest catheter (which worried> > > me to death). Flolan seems to be working, thank God.> > > >> > > > I mentioned to you all about the rash, think I called them lesions.> > > They look like splotches of little blisters and they are bright red.> > > Well, I have about a million now. My back is covered. Some larger than a> > > quarter. I look like I have the black plague!!!! The pulmo looked at> > > them when I was there a week ago....said it looked like Eczema. His> > > secretary made me an appt. with a dermatologist but not until June 5.> > > Well, I have so many new splotches since then. Last night I e-mailed the> > > doc to tell him that I had read online that Eczema rash was a side> > > effect of Flolan (if he knew this last week, he didn't say it)> > > so.....this morning he e-mailed back to say he is sending out a steroid> > > cream and that he is calling to see if he can get my appt with the derm> > > moved up. My big worry is that the spots are beginning to come up> > > underneath the sterile bandage. I can only change is once a week so how> > > am I to treat the spots under there with a topical cream???> > > >> > > > The splotches are spreading onto my arms and legs now ..... and my> > > head even itches. I just look more and more beautiful every day. My face> > > is continually red from the flushing. I look so healthy...ha! ha! People> > > keep telling me how good I am looking. No need for a blusher for me.> > > Lipstick either....I have nice purple lips!> > > >> > > > Well, the saga continues and so do I. I continue to thank God for> > > every day. He has pulled me out of the valley of death so many times. I> > > am just thankful for every day.> > > >> > > > And, I thank God for all of you.> > > >> > > > Hugs, Joyce D.> > > >> > > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension> > > 2008> > > > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected> > > for Transplant 2006> > > > .....I will not forget you. Behold, I have engraved you on the palm of> > > my hands. Isaiah 49: 15-16> > > >> > >> >>

[Guest guest]

Joyce,

I am glad you got your appointment on Wed. That eczema is so nasty! I am changing my anitihistamine again tonight because mine is acting up, especially on my hands. I went to Emory again today. Everything is still the same as last week. I am so glad that I am in the study. I had one side effect to report: flushing on Monday, & Tuesday. My next appointment is June 20th. Hope you're having a good day. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> > > > >> > > > > Aahahhh Joyce....not more to deal with! You are surely a walking> > > > miracle and at least I have known one. There are many on this> board but> > > > what you have and do deal with is beyond words.> > > > > I know you are under good care (right???)> > > > > and someone soon will find an answer.> > > > > Guess we'll have to call you Queen Spotty now. OMG Joyce, I'm so> > > > sorry. What can I say but....DAMNIT!> > > > > God Bless you over and over again.> > > > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > > > > Don't fret about tomorrow, God is already there!> > > > >> > > > > Update> > > > >> > > > >> > > > >> > > > > Hi All,> > > > >> > > > > I just wanted you all to know that I am getting a little> stronger> > > > every day. I have stopped bleeding from my chest catheter (which> worried> > > > me to death). Flolan seems to be working, thank God.> > > > >> > > > > I mentioned to you all about the rash, think I called them> lesions.> > > > They look like splotches of little blisters and they are bright> red.> > > > Well, I have about a million now. My back is covered. Some larger> than a> > > > quarter. I look like I have the black plague!!!! The pulmo looked> at> > > > them when I was there a week ago....said it looked like Eczema.> His> > > > secretary made me an appt. with a dermatologist but not until June> 5.> > > > Well, I have so many new splotches since then. Last night I> e-mailed the> > > > doc to tell him that I had read online that Eczema rash was a side> > > > effect of Flolan (if he knew this last week, he didn't say it)> > > > so.....this morning he e-mailed back to say he is sending out a> steroid> > > > cream and that he is calling to see if he can get my appt with the> derm> > > > moved up. My big worry is that the spots are beginning to come up> > > > underneath the sterile bandage. I can only change is once a week> so how> > > > am I to treat the spots under there with a topical cream???> > > > >> > > > > The splotches are spreading onto my arms and legs now ..... and> my> > > > head even itches. I just look more and more beautiful every day.> My face> > > > is continually red from the flushing. I look so healthy...ha! ha!> People> > > > keep telling me how good I am looking. No need for a blusher for> me.> > > > Lipstick either....I have nice purple lips!> > > > >> > > > > Well, the saga continues and so do I. I continue to thank God> for> > > > every day. He has pulled me out of the valley of death so many> times. I> > > > am just thankful for every day.> > > > >> > > > > And, I thank God for all of you.> > > > >> > > > > Hugs, Joyce D.> > > > >> > > > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary> Hypertension> > > > 2008> > > > > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)> Rejected> > > > for Transplant 2006> > > > > .....I will not forget you. Behold, I have engraved you on the> palm of> > > > my hands. Isaiah 49: 15-16> > > > >> > > >> > >> >>

[Guest guest]

Hi, Joyce! I'm sorry you're having the terrible rash! I can feel your misery and sympathize. I am covered with a steroid acne that just looks ugly, but no itches. I just wonder how long yours will itch that intensely. I have meant to compare some notes with you when you are able. I also have mixed connected tissue disorder (disease or whatever) with Sjogren's being what i've had symtoms of for about three years. It apparently was not detected by about 5 different doctors and a dentist after severe dry eyes and infections, six cavities at a time, dry mouth, plus all the coughing I was doing. They just don't put it together with all the symptoms. Did you have any similar experiences? Was your lung situation dx before your autoimmune disease? What was your very first course of treatment and how did that work? Are you currently on a drug trial? It sounds like you are, but I'm so new here. I'm

with you on emergency rooms. One experience of five hours was all I could stand. I know that I may rethink that for the future. Take care, Joyce, and I'll be thinking of you. Joyce wrote: Sher, At least they got it moved to Wednesday. I don't do emergency rooms. Don't like them. I am just so glad this nasty stuff is underneath my clothes so I will not be

banned from public places! It looks awful. I know it is a reaction to the Flolan. So, what is my option here. Itch or die. My 7 yr old grandaughter was in the bathroom when I was changing into my jammies and saw all the splothes last night. She freaked out. She just felt to sorry for me. Cute. Have a good weekend. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you.

Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > > >> > > > Aahahhh Joyce....not more to deal with! You are surely a walking> > > miracle and at least I have known one. There are many on this board but> > > what you have and do deal with is beyond words.> > > > I know you are under good care (right???)> > > > and someone soon will find an answer.> > > > Guess we'll have to call you Queen Spotty now. OMG Joyce, I'm so> > > sorry. What can I say but....DAMNIT!> > > > God Bless you over and over again.> > > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > > > Don't fret about tomorrow, God is already

there!> > > >> > > > Update> > > >> > > >> > > >> > > > Hi All,> > > >> > > > I just wanted you all to know that I am getting a little stronger> > > every day. I have stopped bleeding from my chest catheter (which worried> > > me to death). Flolan seems to be working, thank God.> > > >> > > > I mentioned to you all about the rash, think I called them lesions.> > > They look like splotches of little blisters and they are bright red.> > > Well, I have about a million now. My back is covered. Some larger than a> > >

quarter. I look like I have the black plague!!!! The pulmo looked at> > > them when I was there a week ago....said it looked like Eczema. His> > > secretary made me an appt. with a dermatologist but not until June 5.> > > Well, I have so many new splotches since then. Last night I e-mailed the> > > doc to tell him that I had read online that Eczema rash was a side> > > effect of Flolan (if he knew this last week, he didn't say it)> > > so.....this morning he e-mailed back to say he is sending out a steroid> > > cream and that he is calling to see if he can get my appt with the derm> > > moved up. My big worry is that the spots are beginning to come up> > > underneath the sterile bandage. I can only change is once a week so how> > > am I to treat the spots under there with a topical cream???> > > >> > > > The

splotches are spreading onto my arms and legs now ..... and my> > > head even itches. I just look more and more beautiful every day. My face> > > is continually red from the flushing. I look so healthy...ha! ha! People> > > keep telling me how good I am looking. No need for a blusher for me.> > > Lipstick either....I have nice purple lips!> > > >> > > > Well, the saga continues and so do I. I continue to thank God for> > > every day. He has pulled me out of the valley of death so many times. I> > > am just thankful for every day.> > > >> > > > And, I thank God for all of you.> > > >> > > > Hugs, Joyce D.> > > >> > > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension> > > 2008> > > > Mixed Connective Tissue Disease (Lupus,

RA, Sjogren's, etc) Rejected> > > for Transplant 2006> > > > .....I will not forget you. Behold, I have engraved you on the palm of> > > my hands. Isaiah 49: 15-16> > > >> > >> >>