Monday, April 19, 2010

Is April really that close to being over?

It seems like just yesterday I was getting my internal heart monitor put in.  Its still there.  I don’t know if it has picked up anything but I do know it sends lots of information based upon the time it takes to transmit.  So we shall see.

This month has been a month of very little energy.  I filed for disability and I still have to get them some paperwork before they can process it.  I do expect to be denied.  I do expect to get a lawyer.  I do expect that I WILL NOT give up until I get it.  I simply can’t work.  I can’t even last an hour out of bed most of the time.  Its hard for me to accept but it is what it is.

About a week ago I did manage to pull myself outside to take some pictures of the sunset.  I hope you enjoy them.


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Oh yeah I forgot!  I got to deal with my first bought of low blood sugar post gastric by-pass surgery.   I hate this!

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Tuesday, April 13, 2010

I create!

Or so I try anyhow.  I decided to make some silk lollipop flowers last night.  Here is how it turned out:


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Not bad for a first try.

This is how I keep myself from thinking about all the challenges that I have.  It’s my sanity. 


So what do YOU do?

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Friday, April 9, 2010

Finding purpose when you can’t leave the bedroom!


One of the many things that comes with dysautonomia is the incredible unpredictability of how it affects you daily.  It’s often hard to get out of bed yet to even consider holding a full time job.  Nothing more can make you feel useless or like a failure than not being able to do what “normal” humans do everyday. 

I’d love to consider going back to school to get my degree in photography but that is seriously impossible.  Sitting and standing makes my heart beat like I’m running a marathon.  This causes exhaustion beyond belief.  Plus driving 30 minutes to school everyday would wear me out alone.  Oh and there is that little bit that also stops me called money! 

So what does one do with POTS? Here are some suggestions to help you get through the day!

  • Find a hobby! – this can be very good for you when you are feeling stressed.  (I am currently getting into scrap books, again)
  • Start a blog – Why start a blog when there are so many out there? Well it gives you a place to not only let your thoughts out but it can help spread the word about whatever you are going through.  This is very good for dysautonomia/Pots patients because so little is out there and it is great to find someone who has something in common with you!
  • Take some free online courses – Google is a great place to start to find these classes.  Many universities (even MIT!), libraries, and organizations have free courses on a TON of subjects.
  • Read a book -  Yes read a book! There are tons of ebooks online not to mention Google books has some completely on their site.
  • Get some fresh air – Even if you aren’t feeling your greatest it’s always good to step outside for some fresh air.  Plus if it is sunny out then you can get some vitamin D.  Something many people are low in.
  • Take a shower or bubble bath – Not only can you feel like you are being pampered but it is amazing what this can do for your mood.

In the end it’s all about finding a way to make you feel like you can still do something yet in a way that your body can handle it.  Sure POTS can go into a remission like state but who knows when that will be and if it will happen to you.  Finding purpose helps you stay sane and relaxed.