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

Five For Friday 3/3/17

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • 1 day of PT. My feet keep going numb on the elliptical (sigh) so I am switching my cardio to a combination of biking and the treadmill. So far it’s much better.
  • 2 Days of Home Rehab. Trying to incorporate more core. I need to get back on the Pilates reformer!
  • 6 month dental cleaning. 35 and still no cavities!
  • Good nap week. YESSSSS.

2. The Zebra Dress Chronicles continue…I ordered a zebra dress last Friday. It came in two days. I was bloated for the first few days after it arrived so I avoided putting it on since I knew it would be a close call if it fit anyways. Then I got up the nerve, started to put it on, and the ZIPPER BROKE, so I could not tell if it would fit my booty or not. Gah. I took it to my favorite dress place yesterday and she was able to work the zipper down so I could get into it to see if it fit…and it did! Hallelujah. I paid to get a new zipper and it shortened so hopefully very soon, I will be ready for my next zebra project with this dress. Fingers crossed!

3. My kindergartener’s birthday parties are the best kind! I had my first experience at District 5 last night. It’s a place for extreme sports, trampolines, etc. This old body has not been in a foam pit since my gymnast days, and I definitely do not remember getting out of one being such a workout ; ) I am a bit ashamed today to say I am sore…but it was worth it! Thank you, Olive for inviting me!

4. Lent. I am trying to do the “get rid of clutter thing” for 40 days. I have some work to do this weekend. I also want to spend more time unplugged and to work on deep breathing and meditating. Any tips? I seriously suck at slowing my mind down,which obviously means I need a lot of work.

5. We sent a Constant Contact email blast this week. Here it is in case you missed it!

 Benefit Concert:

Dear Zebra Nation,

We have been honored that so many of you have reached out and have asked us when our benefit concert will be for 2017. The answer for this year is, we are taking a year off. After five incredible, rewarding years, our board thought it was a great time to regroup and discuss how we can make all of our events, including our annual benefit, better than ever! To be honest, it is a bit weird not to be currently working on silent auction, staging, and sponsorship, but we look forward to coming back better than ever in future years!

With that said, we are STILL supporting research. We are continuing to support Dr. Blair Grubb’s groundbreaking research on Dysautonomia through the University of Toledo Medical Center. Because of all you, our foundation has been able to support his research with $21,000 to date.

We would LOVE to be able to hit the $25,000 mark for 2017. SO, even though we are not having our big event this year, we hope you may still consider donating to our Dr. Grubb research fund to help us reach our goal!  

If you are interested, you can visit our website at ZebraNation.org to donate! Or you can email us at katie@zebranation.orgto obtain a mailing address where you can mail a donation.  Anyone who donates even $1 to our research fund will have the choice of having their name posted on our website as a donor.

Thank you from the bottom of our hearts.

Speaking of the research on Dysutonomia by Dr. Blair Grubb’s team, the following is an update about the ongoing research that we received on February 12, 2017!

Dear Katie,

We have recently completed two major projects, one has identified that many POTS patients have a blood clotting disorder known as Delta Granule Storage Disease, and the other showing that intermittent IV saline is a safe and effective treatment for POTS patients. We also completed a study looking at the effects of Droxidopa in the treatment of POTS.


The antibody project is still ongoing. We are hoping to submit the paper on our antibody research in the next few months. We have seen that 30% of POTS patients test positive for alpha 1 receptor antibodies. We are in the process of rechecking our data and running additional samples.

Sincerely,

Dr. Blair P. Grubb MD

 GeneFo!

Exciting news for our fellow Ehlers-Danlos Syndrome warriors and caregivers, and our Zebra community at large!

Life as a Zebra Foundation is so proud to have teamed up with the groundbreaking GeneFo – A Social Medical Platform to create an EDS community for support, communication, and condition management!

We launched the community in January! You can create a FREE profile today to join Life as a Zebra’s community at https://www.genefo.com/signup_regular/lzf

 Katie in the Huffington Post: “The People Behind the Disease”

Life as a Zebra Foundation was very grateful to GeneFo – A Social Medical Platform for asking to interview our president, Katie Dama-Jaskolski for the Huffington Post about invisible illnesses, fundraising, and the foundation. You can read the interview here!

 AmazonSmile

Did you know that you can support the Life as a Zebra Foundation every single time you shop at Amazon.com?  Amazon will donates 0.5% of the price of your eligible purchases to the charitable organization of your choice.  To learn more about how you can support the Life as a Zebra Foundation every time you shop, click here.

Upcoming Events

Please stay tuned for information about our upcoming events like our 6th annual Zebra Day, 2017 Senate and House Invisible Illness Resolutions, and other exciting news on our website and Facebook page!

We could not do what we do without you all! Thank you for believing in us and supporting our cause!

 Katie, Allie, and all of our Life as a Zebra Foundation Board of Directors

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