Re: What a tiring day!

[Guest guest]

Holy Moses Joyce....a sombrero? Or some sort of huge floppy hat. I guess I didn't realize the extent of the no sun restrictions for you. Oy this would be a tough one for me, no sitting on the porch with my coffe in the morning. No hanging out outside with my nieces. I'm so sorry about this huge additional restriction!

But once again your amazing sense of humor comes through. I'm glad you're going to be back on the Cellcept. Hopefully now your skin will gradually clear.

Consider yourself hugged! Love you tons!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

What a tiring day!

I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the city during rush hour was fun, but not as much fun as getting up early enough to get all my meds and slather itch cream and sunblock all over my body.

Anyway, I really like this doc and he was so smart. I really like smart. He is putting me back on Cellcept, said it should not have been stopped in December.... that this whole skin outbreak was a result of that. He is also having me take Plaquenil. I have taken it in the past and had no problems. He was reassuring and kind.

Then this afternoon I saw the Dermatologist and got stitches out of my back. Ouch. He said that I should wear sunblock all day every day and reapply when I went out. But try to stay in rooms with no sun access. When I go out, I am supposed to wear a huge hat....like a Sombrero, he said....so that no sun gets on my face or neck.

Now, let me tell you that I am not going to wear a Sombrero.... good grief!!! I am in the pits of humiliation as it is. In a wheelchair, tubes running out of my chest and nose, hair falling out, sores all over and now a Sombrero.

He said that if there was any light coming into a room, it was poison to me. I am extremely allergic to the radiation from the sun. So, not only can I not go out, I cannot even look out. But, I have to get out to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! What a spectacle! At least with my big dark glasses and big hat.....no one will recognize me. Except for the fact that my husband will be there.

So, anytime you feel self conscious because of your 02 tubing, etc. Please know it can get worse.....much worse.

I guess if I wear a Sombrero, I can stop worryng what color my hair is, huh?

Good Grief!

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]

Holy Moses Joyce....a sombrero? Or some sort of huge floppy hat. I guess I didn't realize the extent of the no sun restrictions for you. Oy this would be a tough one for me, no sitting on the porch with my coffe in the morning. No hanging out outside with my nieces. I'm so sorry about this huge additional restriction!

But once again your amazing sense of humor comes through. I'm glad you're going to be back on the Cellcept. Hopefully now your skin will gradually clear.

Consider yourself hugged! Love you tons!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

What a tiring day!

I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the city during rush hour was fun, but not as much fun as getting up early enough to get all my meds and slather itch cream and sunblock all over my body.

Anyway, I really like this doc and he was so smart. I really like smart. He is putting me back on Cellcept, said it should not have been stopped in December.... that this whole skin outbreak was a result of that. He is also having me take Plaquenil. I have taken it in the past and had no problems. He was reassuring and kind.

Then this afternoon I saw the Dermatologist and got stitches out of my back. Ouch. He said that I should wear sunblock all day every day and reapply when I went out. But try to stay in rooms with no sun access. When I go out, I am supposed to wear a huge hat....like a Sombrero, he said....so that no sun gets on my face or neck.

Now, let me tell you that I am not going to wear a Sombrero.... good grief!!! I am in the pits of humiliation as it is. In a wheelchair, tubes running out of my chest and nose, hair falling out, sores all over and now a Sombrero.

He said that if there was any light coming into a room, it was poison to me. I am extremely allergic to the radiation from the sun. So, not only can I not go out, I cannot even look out. But, I have to get out to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! What a spectacle! At least with my big dark glasses and big hat.....no one will recognize me. Except for the fact that my husband will be there.

So, anytime you feel self conscious because of your 02 tubing, etc. Please know it can get worse.....much worse.

I guess if I wear a Sombrero, I can stop worryng what color my hair is, huh?

Good Grief!

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,

you made me laugh a bit about the Sombrero hat. I'm glad you like

your new Rheumatologist and you're so right about having a dr who's

very smart. It's always great to have a medical professional who

knows exactly what he has to do. I hope the stitches didn't hurt so

much when he was removing them.

Question: Even though you have to stay in rooms, with no access to

sunlight, can you at least have the windows open for the breeze and

air to come into the room?

I Hope my new Rheumatologist that I'm seeing in 2 weeks, has good

patient manners....

Hugs

Irene PF 03/07 Raynaud's Disease 09/07

Crohn's Disease 03/95

>

>

> I saw my new Rheumatologist at 8:20 a.m. this morning. Driving

into the

> city during rush hour was fun, but not as much fun as getting up

early

> enough to get all my meds and slather itch cream and sunblock all

over

> my body.

>

> Anyway, I really like this doc and he was so smart. I really like

> smart. He is putting me back on Cellcept, said it should not have

been

> stopped in December....that this whole skin outbreak was a result of

> that. He is also having me take Plaquenil. I have taken it in the

past

> and had no problems. He was reassuring and kind.

>

> Then this afternoon I saw the Dermatologist and got stitches out of

my

> back. Ouch. He said that I should wear sunblock all day every day

and

> reapply when I went out. But try to stay in rooms with no sun

access.

> When I go out, I am supposed to wear a huge hat....like a Sombrero,

he

> said....so that no sun gets on my face or neck.

>

> Now, let me tell you that I am not going to wear a Sombrero....good

> grief!!! I am in the pits of humiliation as it is. In a

wheelchair,

> tubes running out of my chest and nose, hair falling out, sores all

over

> and now a Sombrero.

>

> He said that if there was any light coming into a room, it was

poison to

> me. I am extremely allergic to the radiation from the sun. So, not

> only can I not go out, I cannot even look out. But, I have to get

out

> to go to doc appts, etc. So, I am supposed to wear a big hat!

Mercy!

> What a spectacle! At least with my big dark glasses and big

hat.....no

> one will recognize me. Except for the fact that my husband will be

> there.

>

> So, anytime you feel self conscious because of your 02 tubing, etc.

> Please know it can get worse.....much worse.

>

> I guess if I wear a Sombrero, I can stop worryng what color my hair

is,

> huh?

>

> Good Grief! [Cinco De Mayo 3]

> <http://www.smileycentral.com/?partner=ZSzeb001_ZSXXXXXX37>

>

> 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

>

>

>

>

>

>

>

> <http://smiley.smileycentral.com/download/index.jhtml?

partner=ZSzeb113_Z\

> SXXXXXX37 & utm_id=7921>

>

[Guest guest]

Joyce... the picture of the sombrero is priceless!

As I told you about my grandmother using an umbrella when she went out.......would this possibly be an alternative to the 'sombrero'? I do understand the necessity of avoiding rays...grandma hated going outside. Guess it's sure a personal call. What's worse, the hat or an umbrella?

I'm glad you like the Dr you saw. You sure need that.

God's Blessing on you today!

MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there!

What a tiring day!

I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the city during rush hour was fun, but not as much fun as getting up early enough to get all my meds and slather itch cream and sunblock all over my body.

Anyway, I really like this doc and he was so smart. I really like smart. He is putting me back on Cellcept, said it should not have been stopped in December....that this whole skin outbreak was a result of that. He is also having me take Plaquenil. I have taken it in the past and had no problems. He was reassuring and kind.

Then this afternoon I saw the Dermatologist and got stitches out of my back. Ouch. He said that I should wear sunblock all day every day and reapply when I went out. But try to stay in rooms with no sun access. When I go out, I am supposed to wear a huge hat....like a Sombrero, he said....so that no sun gets on my face or neck.

Now, let me tell you that I am not going to wear a Sombrero....good grief!!! I am in the pits of humiliation as it is. In a wheelchair, tubes running out of my chest and nose, hair falling out, sores all over and now a Sombrero.

He said that if there was any light coming into a room, it was poison to me. I am extremely allergic to the radiation from the sun. So, not only can I not go out, I cannot even look out. But, I have to get out to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! What a spectacle! At least with my big dark glasses and big hat.....no one will recognize me. Except for the fact that my husband will be there.

So, anytime you feel self conscious because of your 02 tubing, etc. Please know it can get worse.....much worse.

I guess if I wear a Sombrero, I can stop worryng what color my hair is, huh?

Good Grief!

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]

Beth,

This morning I had to go for bloodwork (never mind that they took 9 vials just yesturday).....anyway, I was hungry for a Cracker Barrell Breakfast so we went. Well, they had the cutest hats. Big brimmed beach type hats. Some beaded. Really cute. I would have gotten more than one, but I couldn't afford it. So, I chose a multicolored one that is just adorable. That and my big black sunproof glasses and I pass for Angelina. Especially with my sunburned swollen lips.

So, no more sun on my head. The doc said that once the Cellcept and Plaquenil began working the rash may let up. It takes so long to get all the medicine and sunscreen slathered on to go anywhere. I got my medicine cream in a one pound container this time. Those stupid little tubes only covered half my body and were $12 ..... now I get a big jar for $15 copay. Much cheaper.

The Rheumatologist was calling the student docs in to look at the rash, so that they would know what it looked like in the future. I hope it goes away and I never have to see it again. I am really tired of docs. This has been a full week of them. Next week I start with the dentist. We are planning to rob a bank to pay for that part. It is going to be bad. The next wife is going to be left with nothing. I'm spending it all.

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>> Holy Moses Joyce....a sombrero? Or some sort of huge floppy hat. I guess I didn't realize the extent of the no sun restrictions for you. Oy this would be a tough one for me, no sitting on the porch with my coffe in the morning. No hanging out outside with my nieces. I'm so sorry about this huge additional restriction! > But once again your amazing sense of humor comes through. I'm glad you're going to be back on the Cellcept. Hopefully now your skin will gradually clear. > Consider yourself hugged! Love you tons!> > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive > > > > > > What a tiring day!> > > I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the city during rush hour was fun, but not as much fun as getting up early enough to get all my meds and slather itch cream and sunblock all over my body. > Anyway, I really like this doc and he was so smart. I really like smart. He is putting me back on Cellcept, said it should not have been stopped in December.... that this whole skin outbreak was a result of that. He is also having me take Plaquenil. I have taken it in the past and had no problems. He was reassuring and kind. > Then this afternoon I saw the Dermatologist and got stitches out of my back. Ouch. He said that I should wear sunblock all day every day and reapply when I went out. But try to stay in rooms with no sun access. When I go out, I am supposed to wear a huge hat....like a Sombrero, he said....so that no sun gets on my face or neck. > Now, let me tell you that I am not going to wear a Sombrero.... good grief!!! I am in the pits of humiliation as it is. In a wheelchair, tubes running out of my chest and nose, hair falling out, sores all over and now a Sombrero. > He said that if there was any light coming into a room, it was poison to me. I am extremely allergic to the radiation from the sun. So, not only can I not go out, I cannot even look out. But, I have to get out to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! What a spectacle! At least with my big dark glasses and big hat.....no one will recognize me. Except for the fact that my husband will be there. > So, anytime you feel self conscious because of your 02 tubing, etc. Please know it can get worse.....much worse. > I guess if I wear a Sombrero, I can stop worryng what color my hair is, huh?> Good Grief!> 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]

Beth,

This morning I had to go for bloodwork (never mind that they took 9 vials just yesturday).....anyway, I was hungry for a Cracker Barrell Breakfast so we went. Well, they had the cutest hats. Big brimmed beach type hats. Some beaded. Really cute. I would have gotten more than one, but I couldn't afford it. So, I chose a multicolored one that is just adorable. That and my big black sunproof glasses and I pass for Angelina. Especially with my sunburned swollen lips.

So, no more sun on my head. The doc said that once the Cellcept and Plaquenil began working the rash may let up. It takes so long to get all the medicine and sunscreen slathered on to go anywhere. I got my medicine cream in a one pound container this time. Those stupid little tubes only covered half my body and were $12 ..... now I get a big jar for $15 copay. Much cheaper.

The Rheumatologist was calling the student docs in to look at the rash, so that they would know what it looked like in the future. I hope it goes away and I never have to see it again. I am really tired of docs. This has been a full week of them. Next week I start with the dentist. We are planning to rob a bank to pay for that part. It is going to be bad. The next wife is going to be left with nothing. I'm spending it all.

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>> Holy Moses Joyce....a sombrero? Or some sort of huge floppy hat. I guess I didn't realize the extent of the no sun restrictions for you. Oy this would be a tough one for me, no sitting on the porch with my coffe in the morning. No hanging out outside with my nieces. I'm so sorry about this huge additional restriction! > But once again your amazing sense of humor comes through. I'm glad you're going to be back on the Cellcept. Hopefully now your skin will gradually clear. > Consider yourself hugged! Love you tons!> > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive > > > > > > What a tiring day!> > > I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the city during rush hour was fun, but not as much fun as getting up early enough to get all my meds and slather itch cream and sunblock all over my body. > Anyway, I really like this doc and he was so smart. I really like smart. He is putting me back on Cellcept, said it should not have been stopped in December.... that this whole skin outbreak was a result of that. He is also having me take Plaquenil. I have taken it in the past and had no problems. He was reassuring and kind. > Then this afternoon I saw the Dermatologist and got stitches out of my back. Ouch. He said that I should wear sunblock all day every day and reapply when I went out. But try to stay in rooms with no sun access. When I go out, I am supposed to wear a huge hat....like a Sombrero, he said....so that no sun gets on my face or neck. > Now, let me tell you that I am not going to wear a Sombrero.... good grief!!! I am in the pits of humiliation as it is. In a wheelchair, tubes running out of my chest and nose, hair falling out, sores all over and now a Sombrero. > He said that if there was any light coming into a room, it was poison to me. I am extremely allergic to the radiation from the sun. So, not only can I not go out, I cannot even look out. But, I have to get out to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! What a spectacle! At least with my big dark glasses and big hat.....no one will recognize me. Except for the fact that my husband will be there. > So, anytime you feel self conscious because of your 02 tubing, etc. Please know it can get worse.....much worse. > I guess if I wear a Sombrero, I can stop worryng what color my hair is, huh?> Good Grief!> 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]

Beth,

This morning I had to go for bloodwork (never mind that they took 9 vials just yesturday).....anyway, I was hungry for a Cracker Barrell Breakfast so we went. Well, they had the cutest hats. Big brimmed beach type hats. Some beaded. Really cute. I would have gotten more than one, but I couldn't afford it. So, I chose a multicolored one that is just adorable. That and my big black sunproof glasses and I pass for Angelina. Especially with my sunburned swollen lips.

So, no more sun on my head. The doc said that once the Cellcept and Plaquenil began working the rash may let up. It takes so long to get all the medicine and sunscreen slathered on to go anywhere. I got my medicine cream in a one pound container this time. Those stupid little tubes only covered half my body and were $12 ..... now I get a big jar for $15 copay. Much cheaper.

The Rheumatologist was calling the student docs in to look at the rash, so that they would know what it looked like in the future. I hope it goes away and I never have to see it again. I am really tired of docs. This has been a full week of them. Next week I start with the dentist. We are planning to rob a bank to pay for that part. It is going to be bad. The next wife is going to be left with nothing. I'm spending it all.

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>> Holy Moses Joyce....a sombrero? Or some sort of huge floppy hat. I guess I didn't realize the extent of the no sun restrictions for you. Oy this would be a tough one for me, no sitting on the porch with my coffe in the morning. No hanging out outside with my nieces. I'm so sorry about this huge additional restriction! > But once again your amazing sense of humor comes through. I'm glad you're going to be back on the Cellcept. Hopefully now your skin will gradually clear. > Consider yourself hugged! Love you tons!> > Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive > > > > > > What a tiring day!> > > I saw my new Rheumatologist at 8:20 a.m. this morning. Driving into the city during rush hour was fun, but not as much fun as getting up early enough to get all my meds and slather itch cream and sunblock all over my body. > Anyway, I really like this doc and he was so smart. I really like smart. He is putting me back on Cellcept, said it should not have been stopped in December.... that this whole skin outbreak was a result of that. He is also having me take Plaquenil. I have taken it in the past and had no problems. He was reassuring and kind. > Then this afternoon I saw the Dermatologist and got stitches out of my back. Ouch. He said that I should wear sunblock all day every day and reapply when I went out. But try to stay in rooms with no sun access. When I go out, I am supposed to wear a huge hat....like a Sombrero, he said....so that no sun gets on my face or neck. > Now, let me tell you that I am not going to wear a Sombrero.... good grief!!! I am in the pits of humiliation as it is. In a wheelchair, tubes running out of my chest and nose, hair falling out, sores all over and now a Sombrero. > He said that if there was any light coming into a room, it was poison to me. I am extremely allergic to the radiation from the sun. So, not only can I not go out, I cannot even look out. But, I have to get out to go to doc appts, etc. So, I am supposed to wear a big hat! Mercy! What a spectacle! At least with my big dark glasses and big hat.....no one will recognize me. Except for the fact that my husband will be there. > So, anytime you feel self conscious because of your 02 tubing, etc. Please know it can get worse.....much worse. > I guess if I wear a Sombrero, I can stop worryng what color my hair is, huh?> Good Grief!> 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> >