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LisaBulman

So Frustrated!

33 posts in this topic

Lisa,

Welcome home! Sounds like you got a full bodywork while in the hospital. Glad to hear that they didn't find any serious problems, but I know it's still frustrating to not be sure what is really going on. With a stable 02 stat (I'm assuming stable normal), you must be getting enough O2 through those alveoli. It will be interesting to see the results of your pft. Do they plan to do a HRCT? It's my understanding that's on of the best tests for seeing those fibrotic changes,

 

So are you breathing any better? I hope you get plenty of rest today. You deserve it. But don't forget to take the GERD medications at 5 am. If that's when the hospital gave it to you, then that's probably when you should be taking it. NOT!!!!! :lol:

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Ah, so good that you are back home where you can get some rest. That is if you take advantage of that opportunity and don't jump headlong into the supermom routine. :) Anyway, glad that they were able to test so thoroughly and rule out so many possible causes. We missed you lots, but do take it easy.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Lisa,

 

I'm overjoyed that you are out of the hospital...and glad they plopped you in there, too! Difficulty breathing is nothing to be taken lightly in your condition.

 

I hope you are still considering putting up an OUT SICK sign on your frig for the whole month. You'll need it just to recuperate from the hospital.

 

It is great to have you back!!


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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Hi again,

I have my pft scheduled for Friday morning. I truly wish I could put an out sick sign up by there is no way I can. We have way too much going on (yes I know this is part of my problem) but my kids have made commitments and there is no way out of them. Plus Emma was invited to join the dance team at her studio, you are supposed to be 10 but they see great potential in her so they invited her a year early. Anyway, we are going on a trip with them this month so she can take a class at the Broadway Dance Center in NY. Of course it is already paid for so we are going! Maybe I will just cut back on housework. :)

 

Great to be back, but I am still having difficulty breathing and feel out of sorts.

 

I'll keep you all posted!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Hi Lisa,

 

That's wonderful that Emma gets to go to a class at Broadway Dance Center! I'm sure you'll all have a terrific time with that trip. Cutting back on housework sounds like a great plan. ;)

 

I hope your PFT goes okay on Friday. Too bad we can't study up for all these tests, eh?


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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I'm glad you're okay Lisa! I know what you've been going through - me too! Haven't done an ER or hospital stay ... It's soooooooo hard to know what to do when especially when breathing is the issue. I've gone back & forth with this for years and hope you find a solution for yourself when you see the PFT! So sorry that you're going through this but you are not alone! Michele


Soft hugs your way,

 

Michele

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Lisa,

My son has Chiari Malformation as well .... has had it since he was 9 years old, now 30. He has had decompression surgery at UCLA 4 years ago. But he recent MRI shows that the tonsil size is the same as pre-surgery. He also complains of swallowing issues..? There is an active Chiari support group on line if you need one.

Laurie jill

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