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I’m baaaaack

Welcome back, strangers! I dropped the ball, again, on blogging on a timely manner. Whoops! But now that the hustle and bustle of the holidays are behind us, I can finally sit down and form a logical sentence. 

As much as I LOVE Christmas, the spirit and all the goodness that goes with it, December is the most stressful month. AND to add to the mix, my birthday is 5 days before Christmas–lots going on! But we don’t need to talk about that; I’d rather forget I only have 2 years left in my twenties😩 

December in a nutshell:

Make sure everyone is accounted for on my checklist✅ Bake a ton of cookies probably no one is going to eat because they get a butt load of sweets already✅ Make, address and mail Christmas cards✅ Buy a new outfit for Christmas, even though it is completely unnecessary, there’s no way you show up for Christmas with an old outfit✅ Celebrate my Mom’s birthday (the 12th)✅ Celebrate my birthday (the 20th)✅ Went to Tampa for a week to finish up my trial✅ Be Santa Claus for my kid and buy him everything, which is a dumb idea because that just means more crap in the house✅ Take it out of the shopping cart; he doesn’t need all this✅ End up buying it all anyway because “it was too good of a deal to pass up!” ✅ Go to the mall three days before Christmas, stand in line for two hours just for Eli to cry that he doesn’t want to sit on Santa’s lap✅  Compromises that he will ‘stand’ by Santa and give a three second smile✅ Decorate the house✅ Wrap presents✅ Try to do as many Christmas festivities✅ Holiday parties, dinners, lunch, brunch..pretty much any excuse to drink with friends during the holiday season

Even with a lot on my plate, I wanted to switch gift giving up this year and make all my gifts. I’ve been going through a crafty kick and wanted to really go full force with it and get creative. I looked up some ideas on Pinterest (go figure), put my own spin on things and got to work! I hope to further this and make more creative gifts in the future.  

    
          Then Christmas comes and I don’t want the day to end. The cheer. The love. Everything that’s so joyous and calm that day….I want everyday! All the planning and chaos is so worth seeing the happiness on families faces, especially Eli’s. 

    
    
      
     

Now that I’m letting go of Christmas, I’m trying to fast forward through winter. Let the warmth be upon us. Pleeeaase! 

Let’s rewind for a bit and bring everyone up to speed on my latest trial. I’ve procrastinated big time on sharing with you, but since my diet is over I’ve been too busy stuffing my face with donuts😉 

  I had this bite of donut the minute I was finished with the trial and that’s actually been the last (for now). I wanted to vom after I ate it. I felt so sick. That was the worst donut experience. Ever! I dreamt of this very moment and this was not at all how I envisioned it to go down. 

But my body got so used to not having all the bad, fatty, sugary foods so it was quite the shock to my system. It actually took me a few weeks to not feel sick when I introduced all the ‘not so good’ foods back. That just goes to show you how much our bodies yearn for the nutritional foods and want to reject all the crappy foods. We should listen to our bodies more often. When you drink more water and eat more foods from the earth, instead of processed foods and soda, you feel like a million bucks! This modified diet has actually kept me on a good track of eating better. Don’t get me wrong, I missed pizza and taco nights too much to totally knock that off my plate, but it’s been more of a treat. I don’t dabble in to that a lot. So when I do have it, it’s much more enjoyable!

And I even got blessed with my brother coming to visit for a month right after my trial ended–he really took over in the kitchen and cooked AMAZING meals for me. My brother, Peter, is a vegan, so cooking tofu, veggie patties, greens and any type of veggie is totally up his alley! Having him cook made eating the right foods really easy for me.  

     
 

Ok.. Enough talk about food. Let’s get down to the knitty gritty of this study. Even though, I don’t have much info I’m allowed to share yet, I still owe you all some type of an explanation. 

My last day of being part of the RT001 trial was December 11th. This last visit was my longest. I was in Tampa for 6 days and it consisted of the hourly blood draws, neurological testing, physical examination, the bike test…pretty much everything I did prior, I had to do again to test for differences/comparisons from being on study drug. I can’t disclose any results of how I felt, unfortunately. I still don’t even know if I had RT001 or the placebo. The research program can’t share that with me until everyone has completed this trial (which is why I can’t give any indication of how I felt). The last I heard was the final two participants were ready to start and we should all get answers in February. I’m very anxious to hear! You have my word–when I hear, I’ll let you all know! I will not procrastinate on that; promise! 

Since I don’t have too much to share about that, I’m going to switch gears and shed some light on something…

I’m sure people are meaning well, but when I hear  you call me “brave” and “strong” I don’t always know how to take it. I didn’t ask for FA. There’s nothing brave or strong about Friedreich’s Ataxia. My courage comes from what I do. Not what I have. 

I’m brave because I have to be. No, no one is forcing me to be that way, but I have a child who deserves to see my bravery. Eli should not ever have to see his mommy as someone who gives up–so for him, my will and drive is strong.

Don’t get me wrong…I absolutely love and thrive off the positivity people give, but what I’m getting at is: I hope to be seen as inspiring, courageous, strong through life, not just by sharing my FA stories. 

✌🏼&❤️&😀  

EKP

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