Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Five For Friday 2/1/13

Written by Katie. Posted in Five For Friday

Happy February, friends!

1.  Medical Stuff:

  • 2 Days of Home Rehab.  I should have worked another day in there.
  • My OMM doctor had to cancel my Tuesday appointment due to sickness.  I am rescheduled for later in February.  Right now, my thoracic is in major need of some gentle manipulative medicine.  While I wait, I will rely on heat, strengthening, foam rollers, and my physical therapist.
  • I had a much better stomach week, but a pretty horrible week with pacing myself.  If I had gone to doctor’s appointments or physical therapy, I would have definitely gotten a talking to.  Pacing is one of the hardest things for me, living with EDS and POTS, but I know it is extremely necessary or I will end up taking many steps backwards. This weekend and this upcoming week, I will make a conscious effort to pay attention to my limits more.

2.  We had our first “snow day” of the year on Monday.  Actually it was an ice day, and when I got the call around 5:30, I was so excited I felt like I could have ran laps around the block.  I did do a few cartwheels (it’s tradition) and was then finally able to get back to sleep for an hour.   Don’t get me wrong.  I love my job.  I love my kids and families.  But there is just something magical about being a teacher, and getting a “surprise” day off.  It makes me feel like a kid again.

3.  I spent Friday afternoon with Ms. Adelyn, my friend, Theresa’s baby.  I could seriously snuggle her all day.  So beautiful…So sweet.

adelyn

4.  We are moving forward, forward, forward with benefit planning.  I placed a heavy emphasis this week on working on the foundation’s website with my incredible webmaster, Sebastian.  I cannot say enough about Sebastian, his expertise, and his willingness to put up with my OCD (okay, fine…CRAZY) tendencies.  I also made more appointments with potential sponsors, finalized some details with our opener, and began talks with a graphic designer who is willing to volunteer his services.  We are blessed!  Save the date, zebra friends!  April 13 at Kellogg Center!  More info coming real soon!

5. My brother put me in touch with a woman this week who is trying to figure out if her 12-year-old has EDS and Dysautonomia.  We ended up talking on the phone for an hour, and I could feel her frustration, her obvious desire to help her child, and her willingness to listen to anything that would help her figure out how to get her daughter the help she needs.  I could definitely empathize.  She was speaking a language I knew all too well.  It is times like this that I know deep in my heart that all of the work that is being done with the foundation and the benefit is the right thing for me to do.  I don’t mean to sound corny, but at times it does feel like a calling.  So much awareness, attention, and research still needs to be done for so many chronic, invisible illnesses.  I only hope that one day I can be a small part of that.

Now, tell me how to pace again 😉

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Comments (1)

  • Tonya

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    I got an appointment set with my physio so we can talk about all my pain. I’ve been reading about things and I think it has something to do with the looseness and instability of my hips. Crust like glutes not firing push all the pressure down so can wobbly hips.

    My brother got married in October and his wife hadn’t been feeling well for a while and drs weren’t believeing her. She told one dr how Marfan Syndrome is her family and it got his attention, they found she has some mitral reguritation and is in the middle of dr’s and tests and all that. She had a tilt table last Monday and found ncs.

    Reply

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