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

Five For Friday 2/1/14

Written by Katie. Posted in Five For Friday

February! Whoa!

1. Medical Stuff:

  • This was one of those weeks I felt like I lived at the doctor.
  • 1 Day of PT. Planks, planks, and more planks.
  • 2 Days of Home Rehab. I upped my treadmill incline this week.
  • I saw my psychiatrist on Tuesday. In 15 years, I can honestly say I have always left his office able to breathe so much better. Tuesday was no different. I told him he is never, ever allowed to retire. We changed my meds a bit, and I will be seeing him bi-weekly for the time being. I am always reminded after those appointments that working on my mental health is just as important as working on my physical health.
  • On Thursday, my Dad and I went to Toledo for my annual Dr. Grubb appointment. It went really well overall. I am managing okay, and am going to continue with my POTS plan that I have in place. Lots of water, salt, Midodrine, Propranalol, lots of leg and core strengthening, cardio, compression when I need it, lots of rest, recovery, and pacing, sitting in the shower…Dr. Grubb also made it clear that he is still against full-time work for me. I believe his words were, “it would wreck you.” So that answered that. Of course I brought a long list of questions, but each one I asked really had no answer. That’s the problem with Dysautonomia. There’s so much we still don’t know.
  • Friday, I had my 6 month cleaning at the dentist. Still no cavities at 32 but I need to get better at flossing every single day.

2. Snow Day #5 is in the books! What a crazy winter. I am beginning to believe my niece, Cecilia (who thinks she is Elsa from Frozen), when she says she puts magical, frozen “spells” on us.  We can have one more snow day before we have to start making them up. I am interested to see what February brings…

3.  When it comes to our bodies, so many of us want the opposite of what we have. Case in point: I got on the scale in Toledo and my eyes got really wide. I was down 10 pounds from my last appointment. My clothes have gotten looser but I have just been ignoring it. However, the number on the scale made it hard to ignore. Now, if I had gotten on the scale four years ago (pre-sickness) and weighed what I weighed on Thursday, I would have been ecstatic. But instead, I immediately felt a tiny sense of panic, which I fully know is because the first sign of me getting sick a few years ago was weight loss.

Even though I am not having the extreme symptoms I had back then, I still got worried. Boost, Ensure, and GI pain flashbacks made me feel sweaty. It took some self-talk…”You’ve just been stressed, you haven’t eaten as much lately, you’ve upped your workouts, it’s still a healthy weight for you, etc, etc…” But I guess my point is, it’s all kind of funny. I would have given my right leg for that weight at one point, and because of life and my experiences the last few years, that same number triggered in me a mini panic attack.  Loving my body always has been and always will be an important work in progress…

4. Life as a Zebra Foundation Benefit Concert Updates: More contracts were signed this week, we now have a sound/AV sponsor, we have flooded quite a few people with sponsorship packets, and the vision for the stage design has been set! Save the Date! April 12!

5. A little while back I mentioned my interest in finding a recumbent bike for my house to use on especially POTSy days, when I didn’t want to stand up, but still wanted to work on keeping my legs strong. A friend messaged me last week that they wanted to give theirs to me if I wanted it. I felt like I hit the jackpot. So generous. Tomorrow I get my new treasure. I will make sure each workout is done with gratitude.

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