Barefut's Blog: Stages

6 posts in this topic

Here's an extract from Barefut's latest blog:




There are stages we go through after diagnosis that go something like this:

1. Diagnosis
2. Shock
3. Denial
4. Adjustments
5. Proactivity
6. Gratitude
7. Acceptance
8. Peace

At least these are what I have experienced, along with an underlying grief that tends to resurface now and then......Read more!!


This is a cracking blog, with many thoughts and feelings to which I'm sure you'll all be able to relate and I know you'll enjoy reading it. :bravo: 

Jo Frowde

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

Hello Barefut

My house is often a mess and there's only two of us and a cat! Goodness only knows what it would look like if the kids were back in the mix.

I have a cleaner come every other week and after she goes I enjoy the smell and sight of a clean home...ahhh...then the hob is dirty, the kitchen floor crunchy, cat fur visible on the light coloured carpet, bathroom sink quickly succumbs to soap scum and I lie in bed and look at the dust and ceiling cobwebs. Even though I am the right side of a flare I still can't clean house!

Like you, I have had to just get used to it, suck it up so to speak, and really, if I have energy I'd rather do something else with it and anyways, when it comes to home we'd rather have home sweet home than home clean home. Right?

Looking forward to the next installment.

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

Hello Barefut,


What a thoughtful blog with such practical insight into what "adjusting" to scleroderma means in real life terms. Thank you!



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

Share this post

Link to post
Share on other sites

Hi Barefut,


I can relate very well to your summary of the loss of ability to do everyday things.  Three years ago I pruned all of our more than twenty roses, I did it in two days and it was a bit hard but I managed okay.


This year I look at the garden and think, "There's no way I will be doing the roses this year." And that is the same reaction I have about lots of things about the house.   Even with the routine of twenty minutes work followed by twenty minutes (or 1 hour 20 minutes) of rest, I can't do it.


Keep up the blogs, we all enjoy them.



Share this post

Link to post
Share on other sites

Hi Barefoot,


It is so true what you have said about the different stages that you go through once you have been diagnosed. You have put onto paper in a way that makes sense to all. Thanks for the blog.



Share this post

Link to post
Share on other sites


I never experienced that.  When I was diagnosed by a doctor in internal medicine in 1987, I said okay what now? He didn't give me any direction, just said watch your kidneys.  When I landed up in the hospital with kidney problems in 1990, I gained 40 pounds of water, protein and blood was present in the urine as well as blood work all pointed towards kidneys.  The doctors were really concerned and sent me for a pile of tests.  I was in the hospital for 30 days. They did a biopsy of the kidney and it came back as minimal change disease.  The doctors said it was not due to SD.  At that time they diagnosed me with SD again.  A councelor came in and wanted to talk to me about it, and I told her I was not concerned with it.  I went on a course of treatment of prednisone 125 mg every 2 days and that did not put my kidneys in remission.  I went to another kidney specialist and she used 30 mg of prednisone and a chemo therapy drug.  After 6 weeks, I was in remission.    
Then I was refered to a rheumatologist. He was the head of the department and gave me to one of his new doctors in training.  She was a doll, very compassionate and very pretty.  She sent me for a bunch of tests and diagnosed me with diffuse SD. She said for some people the course of the disease is a long one and I could die of old age before the disease got me.  My symptoms at that time was Raynauds, acid reflux, swollen fingers, with lots of ulcers, tight skin on my arms and back.

Then she left to start her own practice in another city.  That when I decided I didn't want to see anymore doctors and worry myself.  So I went for years not seeing a rheumatologist.

It was not until this year that after a number of alarming symptoms I accepted that I may die early from SD.  It still does not bother me that much, I just never fit into the stages of learning I had a serious disease.

I am not a mocho man, thats just my story.

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