Top Ten Favorite Websites, Blogs and Facebook
Pages Related To Dysautonomia
I’ve been dealing with chronic illness for almost
4 years now. Not quite as long as many, but believe me, long enough. I’ve spent
countless hours online reading, researching and trying to find out as much as I
can about this disorder. Some the following sites can be found on the “Helpful Sites
and Whatnot” tab at the top of this blog, but I figured it was time to list
them in my Top Ten Tuesdays.
So…here goes my top ten favorite websites, blogs
and facebook pages in no particular order:
Ok, I realize I said “in no particular order”
however I had to list this Facebook group first. This has become my “go to” FB
page of late. It is a closed group for those with chronic illness, although
chronic illness is rarely discussed. We talk about and share our lives outside
of our illness, and it is so refreshing. I’ve so enjoyed getting to know the
wonderful people on this site as well as the admin. (Linda Burgess Parsons).
This site is a breath of fresh air. Check it out!!
This is another FB page, although the author
(Michelle) has a blog as well: http://bobisdysautonomia.blogspot.com/
The author is a former Neuropsychologist unfortunately turned Dysautonomia
patient. She is an extraordinary writer and has a knack for putting my thoughts
into eloquent words. Of course they are her thoughts, however they resonate
with me quite often.
This is an informational site for those with
Dysautonomia. There is a plethora of information on this site; anything from
definitions to doctors around the world who specialize in Dysautonomia.
This is a page on Dinet.org. Here on the forums
you can find caring, compassionate and encouraging people from all over the
world sharing, asking, comforting, and discussing all things dealing with
chronic illness, specifically Dysautonomia. This forum has been a god-send to
me many times.
This is a blog that I enjoy reading as well. The
author (Carrie) is a military mom of four (thank you so much for your service
Carrie!) She has a wonderful way of incorporating humor into the world of chronic illness that would
otherwise not be humorous at all.
This is a blog from a gal that lives near my
area. I’ve just recently come upon it and have enjoyed reading it. She is a
free lance writer and has been published in magazines. She is getting
Dysautonomia out there for all to read and increasing awareness one story at a
time.
This is an informational site. It too has a
plethora of information regarding Dysautonomia. They are making wonderful
strides in awareness.
This is yet another blog that I follow. The
author writes about her life with chronic illness, specifically POTS (Postural
Orthostatic Tachycardia Syndrome). There is lots of info on the site and she
allows us into her life with chronic illness.
This is a FB group that I just
joined. It is called “Thriving with Dysautonomia” I can’t wait to dive in and
get to know everyone.
This is yet another FB group called “Coping: Chronic
Illness Support” It is another group that Linda Burgess Parsons admins. Linda
does an awesome job and is always there with a smile and encouraging words.
As you can see, I spend heaps of time on
Facebook!! I’m slightly embarrassed J
Everyone needs support and encouragement and that’s what I get from the FB
pages. Most of the FB groups I’ve listed (if not all) are closed groups which
means that only the people that have been accepted into the group can see your
posts. I prefer it this way as I don’t like sharing my illness with my family
and friends, with the exception of my online friends. I know it sounds strange,
but most of my family and friends don’t really know that I’m sick and/or if
they do, they don’t really understand. That’s precisely why I enjoy these
closed groups. I get to share and be encouraged as well as trying to do my part
in supporting and encouraging others. I can tell you that it sure is nice to
know that I’m not alone in dealing with this illness.
If you’re dealing with Dysautonomia please
be sure to check out some of the above sites. YOU ARE NOT ALONE!!
If anyone reading this has any sites, blogs, FB
groups and the like to share that aren’t listed above, please feel free to
leave a comment below.
We might feel helpless at times, but we shall
never be hopeless!