Jump to content
Sclero Forums

New Member

Recommended Posts



I am new here as well. I have been reading everyone's posts behind the scenes and have truly benefited from all of your honest words.


I injured my back 8 years ago. I have nine levels of damage to my spine, and the doctors all say to 'do what feels good'.


Secondary to my back injury I was diagnosed with mixed connective tissue disease, fibromyalgia, degenerative hip disease, celiac disease, and more recently CREST. I also have two leaky valves in my heart as well lung problems that I will be getting looked at in the end of January. The CREST affects me via Raynaud's, wrist pain, what I describe as 'hair hurt', in my veins (also to be looked at), joint stiffness, exercise intolerance, fatigue, and throbbing all over.


The most challenging aspect of this for me is the attack of my GI tract. I have esophageal dysmotility, as well as problems with 'waste removal' due to spinal stenosis. I have been coping with 'flares' and trying to manage my life differently, but since we relocated last year (due to my need for a one level house) I have had trouble finding balance again.


I love food, and miss having an appetite. However, the one thing that always carries me through is my hope and my sense of humor. We are installing our new appliances next month and plan to fake it til I make it in the appetite category! I will cook up a storm as usual and eat what I can.


Participating on this blog is my first step toward seeking a new equillibrium. I found a pain association website this year, and have enjoyed reading their website. They talk about going from patient to person. That is my goal. Before all this happened, I was a person, with hopes and dreams. Now that I have accepted what I can no longer do I am excited to discover some things I can do despite of my conditions.


I think others here can relate to that decision everyday to get up and wage a war. These conditions have helped me to simplify and prioritize my days in such a way that I carve out more time for pleasure, don't sweat the small stuff (it's all small stuff) and especially to try new things so I can still be be me not my diagnosis.


I currently am waging war against Raynaud's and wrist pain by playing piano again. Sometimes I play so much, my fingers actually get hot! It's great because I am able to make some beautiful music from my pain! One more thing to share, I have a good spirit about me, but need to be around others who 'get it'.


Thanks for reading!


Viva La Diva

Share this post

Link to post
Share on other sites

Hello Viva,


Welcome to Sclero Forums! You have already been through a lot and I am glad to see that you are making the best of a bad situation. You have certainly found a whole new batch of people who 'get it' on this forum!



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

Hello Viva


Welcome to the forums! Great attitude and it seems to be working for you as well!


Take care.

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

Hi Viva,


Welcome to these forums!


Sorry to hear that you're having to deal with so many health problems. Hopefully, your symptoms will settle down and you won't be suffering with so many 'flares'.


Playing the piano to help Raynaud's and wrist pain sounds a very novel idea. I suffer with very painful wrists and hands, but sadly my piano playing never graduated beyond playing 'Chopsticks' with one finger, so I don't suppose that it would help me much!! ;) :lol:


Kind regards,

Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post

Link to post
Share on other sites

Hi Viva,


Seems to have come through the other side!! Congratulations and all the best wishes to you for continued psychological wellbeing.


Great about the piano!!


Look forward to hearing more from you

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