Top Ten Tuesdays

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:

1. https://www.facebook.com/groups/potsyparadise/

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!!

2. https://www.facebook.com/pages/Living-With-Bob-Dysautonomia/137659809587078

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.

3.  http://dinet.org/

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.

4.  http://forums.dinet.org/

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.

5.  http://justmildlymedicated.com/

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.

6. http://letsfeelbetter.com/

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.

7. http://www.dysautonomiasos.com/

This is an informational site. It too has a plethora of information regarding Dysautonomia. They are making wonderful strides in awareness.

8. http://lethargicsmiles.wordpress.com/

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.

9. https://www.facebook.com/groups/198025970324867/

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.

10. https://www.facebook.com/groups/664857806880898/

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!