Re: Re: My Skin Biopsy Report-Joyce

[Guest guest]

Dearest Joyce,

In all your anxiety these weeks over the itchy bumps and all that other POOP you're dealing with under your signature, you sure have managed to personally reach out to me in such a caring way (and at least 20 others!). You single-handedly gave me enough postive help just today to turn me around from doom and gloom to optimism. I know that doesn't help you quit itching like I wish it would, but just know this woman in Texas has you constantly in my mind for some comfort and a much-due break from the itchies!!!!! I hope you at least enjoyed the Mexican food today!

(PF, Sjogren's,Raynaud's 4/08)

Subject: Re: My Skin Biopsy ReportTo: Breathe-Support Date: Friday, May 30, 2008, 6:59 PM

Sher,

This is Dr. Joyce's theory as to why this horrible rash....why now.....I came out of the hospital this last time with three surgical incidents in 7 days....on blood thinners. I was very anemic. The doc started me on iron but it takes time. Well, I think my resistance was down. When I came out of the hospital, I had one spot. Now, I have a million.

I will do whatever they tell me to do. I want it to stop. Thing is the docs are taking thier time getting to me. I wish they had itchy bugs in thier pants. The doc was supposed to call back yesturday. No problem!!!!!

Thanks for caring. I will take all the pity I can get!

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>> Joyce... I'm glad at least that you know what the rash is so it can now be treated. I've just never heard of anyone going through what you do. You are certainly Mrs. Job ok. And, you can still joke. What a doll you are!> MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.> Don't fret about tomorrow, God is already there!> My Skin Biopsy Report> > > > Hi All, (from Mrs. Job)> > It has been so long, most of you have probably forgotten that I have been waiting for my skin biopsy. I am now covered from the top of my head to my ankles with sores. Not on my face, hands or feet??? > > And I am itching!!!!! !!! > > It is not a reaction to Flolan (thank God) but a Lupus Rash, which is not good, but not life threatening. Unless I jump off a bridge to escape the itching. > > Some of you remember that I was on Cellcept for 9 years and I credit it with saving me from dying. Well, my rhumatologist told me in December, when I was getting so short of breath, etc. that it was evidently not working. So I stopped taking it, but before I could even begin some new

treatment, I became so ill with the pulmonary hypertension. > > Anyway, the theory is that the autoimmune system is now reacting to the absence of Cellcept and just going crazy trying to kill me from the outside in! My pulmonologist is setting me up with a new Rheumatologist who will, I hope get me lined out. > > In the meantime, I have to stay indoors as much as possible, stay away from windows or any indirect sunlight.... .wear heavy suncreen day and night. Wear long sleeves, protective glasses, hat, etc when out. Good grief! What next. > > But, I went out today, got my new glasses, which are mahvelous... ..I look great, sores and all. I had to go shop for all my hypoallergenic blah, blah, blah sunscreen stuff....new make up, lotion....everythin g. Then rewarded my self by making my husband take me to eat Mexican. > > Tomorrow, I will stay inside and act sick. Not today. > > I make

a joke of everything, but this IS miserable. I am having to sit on sores on my butt to type this. OUCH! TMI?????> > 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]

May I give a thumbs up to what said. Joyce, I wish you could be free of the itching! LInda K Illinois Cole wrote: Dearest Joyce, In all your anxiety these weeks over

the itchy bumps and all that other POOP you're dealing with under your signature, you sure have managed to personally reach out to me in such a caring way (and at least 20 others!). You single-handedly gave me enough postive help just today to turn me around from doom and gloom to optimism. I know that doesn't help you quit itching like I wish it would, but just know this woman in Texas has you constantly in my mind for some comfort and a much-due break from the itchies!!!!! I hope you at least enjoyed the Mexican food today! (PF, Sjogren's,Raynaud's 4/08) From: Joyce

<jdalton501hotmail>Subject: Re: My Skin Biopsy ReportTo: Breathe-Support Date: Friday, May 30, 2008, 6:59 PM Sher, This is Dr. Joyce's theory as to why this horrible rash....why now.....I came out of the hospital this last time with three surgical incidents in 7 days....on blood thinners. I was very anemic. The doc started me on iron but it takes time. Well, I think my resistance was down. When I came out of the hospital, I had one spot. Now, I have a million. I will do whatever they tell me to do. I want it to stop. Thing is the docs are taking thier time getting to me. I wish they had itchy bugs in thier pants. The doc was

supposed to call back yesturday. No problem!!!!! Thanks for caring. I will take all the pity I can get! 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>> Joyce... I'm glad at least that you know what the rash is so it can now be treated. I've just never heard of anyone going through what you do. You are certainly Mrs. Job ok. And, you can still joke.

What a doll you are!> MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.> Don't fret about tomorrow, God is already there!> My Skin Biopsy Report> > > > Hi All, (from Mrs. Job)> > It has been so long, most of you have probably forgotten that I have been waiting for my skin biopsy. I am now covered from the top of my head to my ankles with sores. Not on my face, hands or feet??? > > And I am itching!!!!! !!! > > It is not a reaction to Flolan (thank God) but a Lupus Rash, which is not good, but not life threatening. Unless I jump off a bridge to escape the itching. > > Some of you remember that I was on Cellcept for 9 years and I credit it with saving me from dying. Well, my rhumatologist told me in

December, when I was getting so short of breath, etc. that it was evidently not working. So I stopped taking it, but before I could even begin some new treatment, I became so ill with the pulmonary hypertension. > > Anyway, the theory is that the autoimmune system is now reacting to the absence of Cellcept and just going crazy trying to kill me from the outside in! My pulmonologist is setting me up with a new Rheumatologist who will, I hope get me lined out. > > In the meantime, I have to stay indoors as much as possible, stay away from windows or any indirect sunlight.... .wear heavy suncreen day and night. Wear long sleeves, protective glasses, hat, etc when out. Good grief! What next. > > But, I went out today, got my new glasses, which are mahvelous... ..I look great, sores and all. I had to go shop for all my hypoallergenic blah, blah, blah sunscreen stuff....new make up, lotion....everythin g. Then rewarded my self by making

my husband take me to eat Mexican. > > Tomorrow, I will stay inside and act sick. Not today. > > I make a joke of everything, but this IS miserable. I am having to sit on sores on my butt to type this. OUCH! TMI?????> > 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> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14