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    JITZUROE   92,010
SparkPoints
80,000-99,999 SparkPoints
 
 
Greek yogurt with cherries on top (and bottom?)

Monday, February 20, 2012


I can't really spill the secrets of this trial, other than to tell you that a small # of people across the U.S. were asked to be a part of a new drug trial for a rare neuromuscular / neurovascular disease. Only a handful of those were accepted to the trial (myself included).

I packed the necessities: Protein bars for emergency meals, comfy clothes for daily tests, lipgloss, and my monkey slippers. Oh yes, that last one was the most important part. Gotta add some silly to the serious whenever possible, right?

There are 4 of us in this particular trial. We are the second group. I had never met anyone else with my disease, so it was strangely special. We range in age from 23-77 years old, but share a few characteristics. One of which is that we are all very pale, (since we cannot be in the sun), and are very red on our hands and feet from inflamation and pain. See, I would like to describe us gals with skin likened to vanilla yogurt, but vanilla yogurt has a bit of color to it (and we are pasty white), so I opted for the Greek yogurt description- adding in some cherries on top to reflect the color of our appendages : ).
Also, we all need to be in cool temps at all times, like yogurt! Yes, we are a tasty group...

We are staying in a very nice research facility run by truly kind medical staff. When I was informed that I had been accepted into this trial, I was worried about the food situation. 2+ weeks of meals NOT prepared by myself (or my wonderful man) left me a bit stressed.
How on earth was I going to eat healthy?
Is green jello considered a fruit?
Does bad coffee help ween one off caffeine?
Is there a secret plan in this? Aack!

Thankfully, the facility directors live a very clean lifestyle. Phew!
We're talking organic roasted chicken (happy birds!), sprouted grain bread bursting with life (literally), loads of fresh produce, etc. They even make their own almond butter and freshly juiced yummy things. I am truly truly blessed.

My worries of being assaulted by deep fried unidentifiable protein and a side of tater tots were laid to rest. Yeehaw.

The only serious bummer is that I am the most extreme case that the drug company has seen, so I actually need to be in much cooler temps than the rest of the group. My room temperature is a a solid 60 at its warmest, so the other gals feel it's too cold for them; their room too warm for me. So I am alone most of the time in between tests and blood draws, and secretly jealous of the laughter and conversations I hear from the other room : (.

If I were antisocial, this would be great since I have an entire wing to myself: big tv, sofa, and a room with 4 beds. If I wasn't in pain, I'd probably fulfill my childhood fantasty of hopping from bed to bed with abandon. But hey, maybe this drug will work, will give me back some normalcy (aside from being a complete GOOFBALL, which no one can prescribe me a drug for, HA!!!), and then I can actually jump on those beds like a 5 year old, right?

Coming to Spark last year helped me realize the bridge between my pain and my emotional reaction to that pain. I had allowed my pain, stress, etc. to reign over my daily life, and wanted so much more. I truly have gotten so much from Spark, and my mindset has changed for the better. Hoorah!
Eating better and learning to work with what I've got has brought me to a much better place all around, even if it still is a daily struggle.
I might not be perfect, but parts of me are fantastic right?
God willing this drug trial is a success, and those other not so cute parts of me will 'cute up' a bit more.
But don't expect the goofball mindset to ever fade, it will only brighten.
Monkey slippers for all!

'Nuff said.
Bren
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  Member Comments About This Blog Post:

BETHALEA 4/6/2012 3:33AM

  i love your goofyness. or is that goofiness? goof-a-palooza-osity? :) sorry i've been away too long. you're always in my thoughts.

xo, b.

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ROSGETSSERIOUS 2/29/2012 3:14PM

    Wow- so happy you were selected for the trial - monkey slippers sound like fun! Do you have monkey suit PJ's - just asking! Hope the drug help.
Cheers emoticon

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SARASMILING 2/29/2012 2:35PM

    Here's hoping the trial will work! Praying for you!!

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SARASMILING 2/29/2012 2:34PM

    Here's hoping the trial will work! Praying for you!!

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CANNIE50 2/22/2012 6:39PM

    Yes, you have fantastic parts, the most fantastic being your bouyant heart and sparkling personality. I am so glad the food is good and that, even though you can't room with the others, you have had conversations with people who truly understand the daily trials and tribulations you deal with day by day, hour by hour. I am thinking of you, as always, little yogurt girl.

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SUNFLOWER4ME 2/22/2012 3:48PM

    Keep yourself busy in that igloo of yours, so the days will pass with only happy positive thoughts of monkey slippers, sugar free gum drops, unicorns, glitter, and rainbows emoticon .

emoticon emoticon emoticon emoticon

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MRSSCHENCK 2/22/2012 6:21AM

    I pray that this trial drug works. emoticon

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CLOVER2 2/21/2012 8:45PM

    The most fantastictist (is that a word?, it IS now!!), part of you is your enormous, wonderful, superduper heart!
I am so happy to hear that you got into the trial, and you will be in my thoughts and my prayers all the time!
My daughter is staying with me right now, she is trying to teach me about Skype, I dunno...but it sounds like it might be a very good thing for you. But remember you always have us to bore you with the details of our hohum lives!
Love you bunches!
emoticon

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KAILYNSTAR 2/21/2012 5:10PM

    I think it's great that you were accepted into the study. I wish I were there with my parka on and be with you and jump on the beds. (They might kick me out though).

Of course, you can imagine strange conversations and think of us two talking them. Then SEE them looking over to our room and feel left out of the conversation!

I really, really hope that this trial helps you. There is nothing more greater a wish that I have at the moment.

Know that I am thinking of you during this time of using you as a pin cushion, (rat), emoticon and I just wish that you brought a bouncy ball with you to bounce off the walls while your waiting.

emoticon

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RYDERB 2/21/2012 4:13PM

    Vampire Girls UNITE! emoticon emoticon emoticon
Hang in there Bren! I really hope they start testing the relief part of this trial on you soon. I you to be able to post a video blog, of you jumping on those beds, wearing those Monkey slippers!
emoticon

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MELIBUG 2/21/2012 3:59PM

    Let me first say - I am VERY happy you are able to be part of the super secret study. Saying my prayers that it brings you some relief.

Skype is a wonderful idea for you to be part of their fun!

The monkey slippers brought me a smile! I use to have sawsquatch slippers as a teen. Let me say I have always been blessed with larger feet (tall people need skis so they don't tip over right?) My aunt thought the slippers were appropriate for me. I'm just thankful these days that they actually make more size 11 then they did in the past... I secretly think the cross dressing males helped me out in that department as the sizes and selection did expand a bit over the past 15 years.

Have a super duper day! emoticon

P.S. Snowed here last night, so will have to wait to picnic with my two-fer gift - I'll make sure my work out buddy waves while I work out - thanks!

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1HAPPYWOMAN 2/21/2012 2:52AM

    Parts of you are indeed fantastic! Ooooooooh, I hope the drug helps!!!!!!!!!

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NUMD97 2/21/2012 12:34AM

    I'm sorry to hear that you're separated from your "motley crew" of fellow participants. Since you have your laptop with you, can I assume they have theirs with them as well? Why not then create a Skype group so all of you can share your experiences together, each staying in his/her own room, but still together?

I'm finding I love Skype more and more for personal as well as business stuff. It has got to be the greatest FREE adventure known to man!

Think about it. And of course all of us that follow you in SparkLand are rooting for you every step of the way.

All the best,

Nu

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SUNFLOWERSAVAGE 2/20/2012 11:41PM

    The fact that you have Monkey slippers makes me love you even more!
I will be keeping my eyes that this trial gives you some relief.

emoticon

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MUSICALLYMINDED 2/20/2012 9:54PM

    Show us the slippers!!

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2WHEELEDSHARON 2/20/2012 9:25PM

    I'm glad to hear the medical man hasn't gotten your Goofball down. My slippers with a duck head on the fight foot and duck butt on the left are sending a salute (don't be nervous, its a double high five type of salute;-)

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MISSLISA1973 2/20/2012 7:15PM

    I'm sorry for the pain and inconvenience you have to go through, and that even now that you have met others with your same condition, you are still separated from them. I do hope this helps! Thanks for sharing the good news about the health-nut food. Hooray!
emoticon

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LGAR519 2/20/2012 6:07PM

    I'm so glad that you got in the drug trial. I hope it works for you. Good to know that your nutrition won't suffer.

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CEEG-ERRIFIC 2/20/2012 5:57PM

    Well you've totally changed my idea of what clinical trials look like. I was expecting creepy little rooms and yucky food.
Sounds like you are more of a mini vacation - if only you could share it with others. I really do hope that the trial medication helps to alleviate some of the pain you deal with every day.

And now you need to post a pic of those Monkey Slippers!

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AAAACK 2/20/2012 5:45PM

    ok, so which parts of Spark helped you with this shift from being overwhelmed by the issues and being able to relegate them to only a portion of your life? I'm asking b/c you know my issue that overwhelms me - my son. So I'd really love to know where you found your mindset shift.

As usual, you inspire me to change my own life!

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JCARDINAL 2/20/2012 5:27PM

    I could join your group! Being Irish I have very white skin, having Lupus means I can't go in the sun. My husband is Italian and very tan. He and my son say I glow in the dark. Also I have red hair so there's the cherry on top! I'm glad the food is so good and can help you stay on track. Most hospitals I've been in you can't really distinguish what they're serving you. Hang in there, I really hope this trial is what you need to corral this disease. You have to get a picture of those monkey slippers! emoticon

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