janey

A Little Good News Amongst The Bad

27 posts in this topic

Hi Janey,

 

I am so proud of you for venturing out with your new "friend" so soon! I am sorry it wasn't more sucessful, but good for you for even trying!! I am sure others will have some helpful tips.

 

Warm wishes,

Heidi

Share this post


Link to post
Share on other sites

Hi Janey,

 

I'm thrilled that you've ventured out with your new oxygen tank! Once you've braved your first trip with a new medical device, then you can do anything.

 

There are many different styles of oxygen carrying cases, but nearly all the ones I've seen are intended for the shoulder strap to be worn "over the head", so that the other shoulder bears most of the weight. Many of them also come with a belt, which helps anchor the unit, spreads out the weight-bearing, and prevents it from flopping all around. Gene uses both the shoulder strap and the belt at the same time, although many people mistakenly think they need to just use one or the other.


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.

Share this post


Link to post
Share on other sites

(((((Janey)))))))

wow Kudos to you again!!!! You are such a strong woman. You inspire me :-). Could you put the smallest tank in a backpack for now until you can see if they have a backpack made for this? If I remember right, my dad had a very small tank for fast trips out, then a larger one for longer trips. Mind you its been years and I know things change so I could really be wrong here. Let us know what you get for this.


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

Share this post


Link to post
Share on other sites

All great ideas! THANKS! I'll start testing some of these things out and let you know what works or at least, what I can live with.

 

I haven't heard back from the supply company about a backpack, but with the holidays, I'm not expecting any fast responses. Right now I'm waiting anxiously from my Bosentan to be delivered. It was shipped out Monday from Florida on a 2 day express and now it's Saturday and I still haven't gotten it. The tracking showed it was put on the truck here in town yesterday morning for delivery. Still waiting. I guess too many holiday packages to deliver. I run out tomorrow so I might be cutting these pills in half to make them last until Tuesday.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Yikes, Janey! I sure hope the Bosentan arrives today! I will be sending lots of positive thoughts your way. Please do keep us posted.

 

Warm wishes,

Heidi

Share this post


Link to post
Share on other sites

Janey,

You are a brave woman and I admire you!!! I can just picture fighting with your shoulder bag and nearly knocking your self out with the O2 in the middle of the mall. :)

 

Hopefully your meds will arrive today!! Try to relax and enjoy your holidays....

 

Love,

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)

Share this post


Link to post
Share on other sites

Well, the meds arrived this afternoon. PHEW! I guess the holiday load and the weather here in the southwest has slowed things down.

 

Sweet, unfortunately, Bosentan only has one or two suppliers apparently and isn't available at local pharmacies. I receive it through express mail each month and my doctor has to renew the prescription each month. So I'm pretty much at the mercy of the express delivery system.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Phew! What a relief! I am so glad that it got to you in time, Janey.

 

Hope you have a wonderful day :D

 

Warm wishes,

Heidi

Share this post


Link to post
Share on other sites

Janey,

 

It sounds like you a wonderful doctor that really cares and is concerned on how to get things straight for you. I'm glad to hear to hear that you've had some new found good news come up. I've never heard of these medicines you've mentioned. I printed out some pages on them and I plan on showing them to my doctor. I'm glad to hear that things are going well for you. I hope soon my time will also come.

 

 

R'egene

 

Happy Holidays!!! :D

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now