Project
As per usual yesterday was pretty much hell (although it subsided in the evening after I finally broke down and took some painkillers) and then today I awake with no trace of how I felt less than 24 hours ago! You would never know that yesterday for most of the day I could not even stand up straight! I am grateful when I wake up in less pain. So today started out good. The perfect day to begin my planning..
I know I may have left you sort of hanging with all this talk about my “ideas” so I would like to share with you what has been keeping my brain very occupied all day (all week) long. I finally sat down and wrangled in my brain long enough to put it into words in an email, so I will just copy and paste what I described there since I believe it does it justice:
“….Basically, the idea is to have a place for people to go on the web
that is “all things autoimmune” . It will be a website complete with
social networking capabilities that is essentially an information hub.
It will be professional in design yet easy to navigate. The problem I
have found is that it is so hard to find information on your own
disease and I have had to go to many sources, read through many books,
speak to many people, and learn the “hard way” as to how to manage my
illness. Seven years later and it is still a battle —and many people
aren’t even thinking clearly enough to investigate as much as I have
after they’ve been diagnosed with this “gray area’ disease. Since most
of us have done all the legwork and parsed the “good doctors” from the
“bad doctors” or tried a certain diet, alternative healing therapies,
etc. that have worked for us… then why not share the information and
make the resources available online? It can be an insider’s guide to
managing the disease. Just a few ideas are to have the following
sections: a full list of doctors, alternative healers (acupuncture,
energy healing, massage therapy, etc…), a section dedicated to all
about drugs complete with side effects, a section for diet, and
perhaps a blog or articles that can be featured that would help to
cope in living with these diseases (for example, I get Mayan Abdominal
Massages for my stomach and my massage therapist could write an
article about this technique that people can do on themselves
at home with Castor Oil).
The other component is the social networking aspect (optional to use
of course). It became even more clear to me while reading Autoimmune Epidemic that we need to put faces to these diseases. I would set up a section
where we could have people register so we would have a database of our
own of people’s facts and what autoimmune disease they have. This can
be amazing information when it comes to getting an act passed that
Autoimmune Diseases be registered with the NIH, not to mention that
fact that we can create an online “home” for each disease where
people can visit, share, and go to for support. Forums, messaging,
and shared topics can bring everyone together. We can bring the
issues that you write about directly to the people who need it, as
well as their friends and families.
This idea sprung out of the past year. My autoimmune disease took a
turn for the worse when my scleroderma set sites on my heart and left
it with 70% scar tissue! It’s been quite a ride, and my wonderful
friends held a fundraiser in June to help with medical bills. When
350 people showed up and I made a speech about scleroderma and other
autoimmune diseases, so many people that I knew started coming out of
the woodwork “I have fibromyalgia, I have this, I have that, my mom
has lupus, my cousin has MS…” It was like I made it ok to talk about
these things just on that night! I thought,there needs to be more of
this! ….”
So this is the project. I am very excited to get started. I want to just slap it up on a website right now! But, patience Lauren, it has to be just right. I am “web-producing” this weekend. How do you like that term? Then, we’ll see who can design it with me, etc. Lots of ideas that I want to incorporate. I have been trying to think of the perfect name for the website…. Any ideas?
3 years ago • Notes