Describing Pots In My Own Words

[yogini]

I've been resisting joining Facebook, but wound up joining a couple of days ago. I thought it would be a good way for me to explain my condition to my friends - maybe they will get it better if they see it in writing. I thought I'd put a little blurb on my page, so that the info is available for my friends that are interested. I'd love any suggestions you may have - I know many of you have had POTS for a long time and/or have a medical background. (Also, I really don't know how to use Facebook, so if any of you can suggest how/where to add this, I'd appreciate it! ) Here is what I'm thinking:

"As you may know, I have a condition called "POTS" which is a disorder of the autonomic nervous system. The autonomic nervous system controls automatic functions, including heart rate, blood pressure, breathing and digestion. I had a virus a few years back which affected some of my autonomic nerves. When a person stands up, these nerves are supposed to constrict your blood vessels to keep up blood pressure - otherwise gravity would pull all of the blood down to the feet. In my case, my blood vessels don't constrict properly. So, I sometimes feel lightheaded when I sit or stand up and my heart beats faster to pump blood to my brain. Things like exercising, climbing stairs and carrying heavy objects are harder for me, because they make my heart beat even faster. I also have to stay hydrated, which is why caffeine and alcohol aren't the best.

Fortunately, the nerves can heal. I've slowly been getting better and have medicine that makes things a lot easier.

For more information on this condition, you can check out www.dinet.org"

[Rachel]

Facebook is a great way to get a little bit of information out to friends. I have a brief statement included in the "About Me" section on my profile. That would be a good place to put what you've written about your POTS. You can do this by going to your profile page and clicking on the "info" tab. You can then click on the right hand side of the "Personal Information" section to edit the information there. At the bottom of "Personal Information" is the "About Me" section. Just type in whatever you want to say about yourself and POTS.

You can also put links to articles and videos under the "Posted Items" on your profile. Then the information is there for people want to know more about dysautonomia. I've done this with various videos, and some of my friends have really appreciated the extra information.

Happy Facebooking.

Rachel

[ajw4790]

Hi,

I do think your summary is a good summation to those who are not familiar with POTS. Only suggestion is to maybe somewhere include what POTS stands for, just because it can sometimes help people to understand and they don't get it confused with pot.

Hope it helps those you know be more understanding!

[Bella127]

Facebook would be a great way to allow your friends to read up about POTS! Awesome idea! I have been on Facebook for about 3 years now, so if you have any questions, feel free to ask.

Your summary is great! I find it helpful to include small, to-the-point articles when trying to get others to understand POTS - here's a great one where Dr. Grubb gets to the main points:

http://www.stars-us.org/news/news.html

then click where it says "read more" under-

"POTS", Condition like running in place all the time

Read More (PDF) ?

and it will open it in PDF form. I think it is a HUGE thing that he says "it's like running in place all the time" - it gives people without POTS an idea of what it would feel like, and usually their reaction is more understanding than trying to explain all the medical jargon, etc. So you can put that link in a Facebook note, and let your friends read!

As for posting it, I think you can post "Notes" on Facebook...similar to a blog. To do this, I'm pretty sure you have to go to the upper right "search" box on Facebook, and just type in "Notes", then add the application. The cool thing about notes is that you can "tag" certain friends in them - meaning that they will get a notice that there is a note posted for them to read.

Hope that helps!!

Chrissy

[yogini]

I like the idea of the notes. I want it to be there for those who are interested, but want it to be subtle. I like the idea of posting articles and videos too. I'll do a little at a time, so I don't overwhelm myself and others.

Right now I'm still figuring out really basic things like how to find my wall (not a joke)! I'll definitely PM you with any questions... I'm sure I'll have a ton. Thanks!!

[Stace915]

I am at work (yay first day all week I have felt up to making it into the office) so I can't access my Myspace but I have a links to a few articles and websites as well as a "blurb" I wrote myself. I don't know if you are familiar with the spoon theory but that seems to be a good for helping people to have a better idea of what we all go through on a daily basis, also the website dynakids.org is for children but explains things in really cut and dry terms. Hope that helps!

[yogini]

For those of you who do have sites where you've posted articles, videos, etc., if you feel comfortable with sharing them, I'd love to take a look. You can PM me the address and I promise to protect your privacy. Thanks!

[yogini]

Just wanted to add that I received a few really sweet, thoughtful messages from friends in response to what I posted. I wasn't sure how people would react and the positive responses were totally unexpected. One of them was so nice it made me cry. I think a lot of people know I have a health issue, but I don't talk about it much. It makes me feel good and glad that I decided to put it out there. And it gives me hope that people CAN be educated about POTS!

[ramakentesh]

without wanting to sound negative, why would you tell them that the 'nerves' will eventually heal? As far as I am aware although most POTS sufferers experience some improvement from their original and most severe boute of POTS, none ever fully recover and will continue to experience occassional symptomatic episodes.