Sunday, May 29, 2011

Summertime With POTS: A Hell Most Cannot Understand

Those of you who have postural orthostatic tachycardia syndrome (POTS) know how miserable summertime can be for us. I see the increase in posts on Dinet.org already. A lot of us are really feeling the change in the seasons and it can be rather devastating emotionally. Sure physically it really stinks, but for a good number of us we feel pretty decent during the winter months. Some may think that a new treatment they started in the winter was helping, only to find out that treatment in fact has done nothing for them. This is exactly what I found out years ago when I started going down the hormone replacement path. I started on hydrocortisone and florinef for adrenal insufficiency during April and by June I knew it was doing nothing for POTS. People who repeat over and over again that POTS is simply adrenal issues, have no idea what they are talking about. I feel like smacking them upside the head because NONE of them have ever experienced full-blown, life altering POTS.


Blood pooling in my feet

This summer I am having MAJOR pooling in my feet. Please disregard my chipped nail polish, but here is a picture of my feet. The left foot I had elevated for 1 minute and the right foot I just had on the floor like normal. You can see a significant difference in the coloring and bulging blood vessels.

The worst thing about POTS is you cannot do the normal things most people do during the summer. For me going outside and watering my flowers & vegetables can be a heroic achievement in itself. Sometimes they just don't get watered. Simply getting a bath or going to the bathroom is another epic battle. You drag yourself there and back hoping your heart won't be set off too badly. Normally you are not so lucky.
Those who do not have POTS really have no idea how mentally, physically and emotionally exhausting life becomes. Some think you are lazy, whiny or just plain annoying and want nothing to do with you. Do they honestly believe we chose to lead a crappy life where we cannot do something as simple as going on an all day shopping trip? Or going to an amusement park in the middle of the summer? Give me a break!

Here's to another summer where I'm left searching for answers to really get better and when I mean that, I really mean better. Not like those on these forums with a signature full of medications and they still cannot do anything...

Nope, I am looking for the real deal fix.

4 comments:

  1. Hello,

    My name is Victoria. I have IST (Inappropriate Sinus Tach.) Doctors are not sure why exactly so I was researching POTS. Anyway, I came across your blog and read a lot. I wanted to give you a link to a woman with diagnosed POTS. She is using her diet to help her symptoms and also leading others to in Chicago. Thought it might help. Here is the link: http://www.girlgoneveg.com/index.html

    Take care,

    Victoria

    ReplyDelete
  2. Hello

    I have a website/blog geared towards a specific designer breed of dog.

    I recently interviewed a women suffering from dysautonomia. She has a dog that can alert her when she is about to get sick. While the article isn't exclusively focused on dysautonomia, I thought you might have an interest in posting a link to the interview to your website and blog for your readers.

    Here is a link to the interview.



    http://pomskyhq.com/designer-dogs-and-dysautonomia/

    Thank you,

    Kristy
    Pomsky Information

    ReplyDelete
  3. THANK YOU FOR THE BLOG! GOD BLESS YOU!

    ReplyDelete