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31 posts in this topic

Hi Miocean,

 

Thank you for participating in several research projects -- that helps us all, eventually -- and good luck with the new medication. I hope it helps and wouldn't it be wonderful if it helps a whole lot?

 

But oh my, that all sounds confusing to me. Do you ever find yourself going cross-eyed in doctor appointments?  It's the fluid, it's PH but not the fluid, you don't have fluid, and here's a pill for the fluid. It's the lungs, it's not the lungs, its your heart, you have the lung antibody, you only have a low lung antibody, you have lung involvement, you need a lung transplant, use your oxygen, but take this handy dandy little pill and you won't need oxygen at all, but good thing your lung transplant appointment is next week, and oh my, you sure do look good, why I wish I had more patients as healthy-looking as you!

 

I'm exaggerating, of course! 

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Shelley,

Unfortunately you are not exaggerating. At least someone understands.

miocean


ISN Artist

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Hi mio,

 

As usual Shelley has hit the spot.   I often wish I could put things as cleverly as she does.

 

However,most of us do know exactly what you are experiencing and every time somebody suggests to me to try this handy dandy little pill, I fall for it.

 

Best of luck and keep on keeping on.

 

Judyt

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Hi Judy and Miocean,

 

Probably the only reason I can nail some of these things is because I've experienced them myself, and it leaves me wondering sometimes if I'm the only person whose head feels like it is spinning in circles at some (okay, many) medical appointments.

 

Some days, or years, or doctors, are better than others. But generally there manages to be at least one source of mass confusion that can nearly derail my medical care for a spell. And even the best of doctors are seldom on exactly the same page, especially when there is complex illness at stake. Every specialist tends to look at parts instead of people and we are left juggling the big picture and trying to sort out exactly who we should really listen to regarding this, that and the other thing.

 

Sometimes, we have to take it all with a grain of salt, a shrug, or a "whatever, I am not going to micromanage this" approach, such as Miocean has so wisely assumed to resolve the conflicts.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Did I ever tell you I love you all for being there and understanding?  :you-rock:

 

(oh yeah, I think I did but I'll say it again)    :D

 

:emoticons-group-hug:

 

miocean


ISN Artist

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Miocean, I hope you're able to enjoy some of your weekend. It seems like you have more than enough on your plate, and I hope it all settles down for you soon. Try to do something just for you, something that will take your mind off from the health-stuff for a few minutes, or better yet an afternoon or so. My thoughts are with you. Keep us updated.

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