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

Five For Friday 2/9/18

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • 2 Days of Home Rehab.
  • Cancelled my one doctor’s appointment for today because of the snowapocalypse. I’m a wimp.

2. Snow Day Monday. I had to be off Tuesday because of an appointment. Wednesday it was a late start day so I taught for 45 minutes. Today is a snow day. Therefore, I spent 4 hours with my kindergartners this week. NUTS.

3. I sat with a friend today who has EDS. He is 57 and distraught. 18 surgeries, many joint replacements, autonomic nervous system problems, neuropathy, so much pain, once an athlete and now walks with a cane and wears braces just to get from point A to point B. He’s ready to give up. He’s lost. He doesn’t know how he can live this life anymore. I am working on helping him get more medical help and resources, but all of this makes me SO angry. Why has this incredible, kind, intelligent man had to fight for everything? Everything. Diagnosis, three years of trying to prove he needs disability, the fight to be taken seriously, and his constant fight for treatment and management techniques that will allow him to do simple things like have lunch with his family again? Where is the research? Where is the attention to this disease, and at least the acknowledgement that Ehlers-Danlos Syndrome affects people differently, and can be so severe? Why does he have to feel that he is no longer able to be helped, and the only relief he will get is from giving in and choosing to no longer live this life of constant pain and sickness?! It makes me feel angry…sad…helpless. This is a fight that needs to be fought every single day. He is tired. So am I. But there’s no giving up. There is NO giving up on him or anyone else living the invisible, chronic illness life.

And remember, listening with zero judgement goes a long way. Be kind. Always.

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4. People always ask me how do you do it everyday with sickness, loss, and tragedy?I never know what to say to that except you just do. There’s no other choice, so I focus on my get-to’s, lean into gratitude, and put one foot in front of the other.

I realize that that sounds easy, and it is definitely not easy all of the time, but when you find something to care about that is bigger than you, it becomes easier.

How do I do it?

It’s also about surrounding myself with the people who lift me up. Last night, I was able to finally hear Joe Biden speak. Politics aside, talk about a man of faith who has faced tragedy and loss again and again head on. When I hear him speak, I always tear up because I get what he’s trying to say. It’s like he’s speaking my language. Last night, much of his talk was about finding purpose during the hard times and not forgetting where you come from. It was about letting go and letting God.

How do I do it? I do it because I see other people who have it way worse, and I see how they are still able to inspire by example while living a life of purpose, fulfillment, and gratitude. I am lucky to have inspiring people all around me, and Joe Biden happens to be a person I have always been in awe of because of his commitment to family, faith, and his country.

Last night was needed.

So, what about you? Who gives you hope? Inspiration? Who makes you want to be a better you?

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5.  Today is day 6 of the Keto Diet for me. I am learning and hopeful. I have done better than I thought I would, and vowed to go all in for a month (and then go from there), after two of my doctors encouraged me to do so. The hope is my inflammation will decrease, I will have more energy, less brain fog, better cognitive function, and my overall health will improve. Stay tuned…

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