• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
quiltfairy

New to this disease..

31 posts in this topic

Hi Quiltfairy,

 

That is a more positive story, it is so good to be able to find a way around difficult things and get the help you need.

 

To find more emoticons, click on the smiley face and that brings up a list across the bottom of the screen, then click on Show All.

 

Best wishes :emoticon-hug: :emoticon-hug:

Judyt

Share this post


Link to post
Share on other sites

Hello Quiltfairy

 

It's a guess but maybe the interest in the hair loss on the arms related to tight skin? I lost all the hair on hands, feet, arms and legs when they were covered with tight skin. It just all fell out and I never noticed at the time and get this, when the skin softened it grew back...long and black...because that is just what a woman wants on her limbs isn't it?!

 

Go with the earplugs or earphones and speak up and say "I am devastated and wish to process this in peace so please stop talking. I just know you'll understand what I am saying as you do this job regularly and so well." You're going to have enough on your plate managing your own feelings without worrying about those of a total stranger who is getting PAID to drive you!

 

The phase you are in, the fear phase, will eventually move into another and where you are will soon be a memory you share with others on the forums, who will then find themselves, where you are now. 

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

The fear has been helped with this site because I now know what is going on with my body.

 

When I was first diagnosed no one seemed to know anything about the illness just that it was a rare disease; I was really scared at that point not knowing what was going on. It is bad when your doctor does not know what to expect; she only had one other case of it so I got on the internet. Some of the things you can read can be very scary and I have found a lot of them to be untrue, so thank goodness for this site where I am learning the truth. I also gave this website to my doctor and my therapist and to the physical therapy department; they all said it was very informative.

 

My son is taking time off work to take me to my next appointment; any others I have to drive to, I can stop half way and spend the night with my aunt.

 

I had a talk with the young man that took me last time and he just did not seem to get it. He said he had a great time and was looking forward to my appointment in December. I informed him at that point that he would not be driving for me again; he also stated to me that the reason he drove was for him to go and visit a friend that worked at the university as I understand his parents are the same way. I also found out that he does not have a driver's license and that the one he showed me was a fake one. I have not reported that to the police but maybe I should.

 

Thank you all for the responses; they have been very helpful  :D  :D  :D  :D

Share this post


Link to post
Share on other sites

Hi Quiltfairy,

 

Quite apart from breaking the law, I think I would feel very worried being a passenger in a car where the driver had a fake/no driving license and surely this would mean that he's driving without insurance as well? I would certainly report him; he could be a danger to himself and other road users and shouldn't be driving around at all, particularly taking passengers.

 

I'm so pleased that you and your medical team have found our website and forums helpful and informative; that's what we're here for!! :emoticons-yes: 

 

Kind regards, 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Quiltfairy,

 

I'm delighted that you are rounding up more help and support.  It sounds like everyone is pitching in with what they can, which is fantastic.

 

: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.

Share this post


Link to post
Share on other sites

It is nice to hear you are getting so much support from family and your doctor seems to be doing the right things. Dealing with a disease is really frightening, especially when you don't have the answers. Prepare yourself for a roller coaster ride, because that is what it like; you will have your ups and downs. 

 

A recent example I can give you for me is that a recent pulmonary function test showed my diffusion rate had decrease by 7% down to 25 which is very low. I was very upset about this as I have been turned down for a lung transplant at 2 centers.  However, my recent Echo shows improvement and a recent spirometry at my pulmonary doctor also showed improvement. I can't figure it out and try not to get too overworked about anything these days. It's taken me a long time to understand a number is just a number and can vary for many reasons. 

 

My hair also fell out all over my body. I am very fair so it grew back but curly. The good thing about this is I was starting to get normal peach fuzz on my face, almost had a light mustache, and that is all gone now! 

 

miocean


ISN Artist

Share this post


Link to post
Share on other sites