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Rare Disease Day

It’s here! The countdown to rare disease day comes to an end. However, since I started the 100 Positive Days very late, I will keep going on into March, April, and May! In any case, I thought I should stop and take a minute to share some education about the rare illnesses that I have, and hopefully bring some awareness.

Ehlers-Danlos Syndrome

Ehlers-Danlos (EDS) is a genetic connective tissue disorder, which can present itself in a variety of forms or types, including a vascular form which can be life-threatening. However, I have type III, also known as “hypermobile” form. They call us “zebras,” – since we are often medically complicated and hard to figure out – hence the zebra on my blog banner. Hypermobile EDS, also often identified as “Joint Hypermobility Syndrome”, affects 1 in 10,000 people. What it means for me, is I do not have enough collagen and my joints are very loose and stretchy. I’m really good at yoga and gymnastics but should never be allowed to do them because there’s a good chance my joints will dislocate or at least sublux (partially dislocate). I have severe joint pain and my shoulders often sublux, creating further trauma. EDS is the cause of many of my other issues, including two I will mention below, so diagnosis is important to help understand other symptoms. Often a rheumatologist or geneticist can help make the diagnosis, which is typically made from physical manipulations (beighton scale) and symptoms, rather than genetic testing.

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Good Morning: Day 27 #100PositiveDays

The way your morning starts can make a world of difference. Which is why I love waking up to a text from my boyfriend that says “Goodmorning love” or some other sweet thing he says.

As you may have read, I’ve recently adopted the coffee addiction and start most mornings with a cup ‘a joe. Just smelling it puts a smile on my face! Hey, you can’t argue with scientific research 🙂

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I recently changed my wake up alarm from the standard bells chiming or jamaican drum beats the iphone comes with that I’ve always used before. I changed it to a song that puts me in a really good mood – “It’s a beautiful day” by Michael Buble. Alright, so the song may be about walking in on his girlfriend cheating on him and them breaking up, but the words put me in a good mood. I often find myself humming it throughout the day, which is a reminder of how many beautiful things there are in the world.

Waking up to the right start can really change everything.

How do you try and start your day with a smile? Perhaps try these banana pancakes.

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2-ingredient Healthy “Ice Cream”

Faux ice cream – not the animal, the unreal kind, because this is totally Un. Real.

GF, DF, SF, Vegan, Paleo

I love those recipes, that you can text to your friend in under 160 characters. Or tweet in less than 140. AND send a picture! You know those recipes?

Well this is one of them.

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Ingredients:

  • 4 super ripe bananas – frozen
    cut up and freeze in plastic bag, tupperware, or cookie sheet.
  • 2 Tblsp peanut butter

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Optional toppings: frozen (or fresh) bananas, blueberries, or peaches, cacao nibs, unsweetened coconut flakes

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Struggle: Day 26 #100PositiveDays

One of my favorite quotes is, “Be kind, for everyone you meet is fighting a hard battle.” It’s all too true. Divorce, the loss of a child, terminal illness, loss of a family member, troubles at work. We’re all going through something.

photo (16)But it’s the struggle, that makes us strong. For every struggle we overcome and rise above, we grow as a person, learning from it getting even stronger. I know this is easier said than done, which is why I love the quote above. If we treat each person with the upmost kindness and respect, then maybe, just maybe, we will help their struggle, become just a little easier to overcome.

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Faith: Day 25 #100PositiveDays

“I don’t need fame, no one to know my name. At the end of the day, Lord, I pray, I have a life that’s good. Two arms around me, heaven to ground me, and a family that always calls me home.”  – Nashville

I grew up in a christian home.

The kind that went to church (almost) every sunday, attending sunday school throughout my childhood and listening to the sermon with my mom as I got older. But I’ve always wondered – what if I hadn’t been raised by parents with faith? What if I was raised in an agnostic home and never was exposed to religion?

It seems that so often our religious beliefs are guided by whom we were raised and it becomes so much of who we are that we never question it. I sometimes think it would be easier to know that I had a strong, meaningful relationship with God, had I found him “on my own” and not been led in that direction as a child. Then again, what if no one led me to him; or I was so set in my ways, being raised in a home without religion, that I was not open to learning more?

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Light: Day 24 #100PositiveDays

“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.”

– Martin Luther King Jr.

Light, for me, is sunshine. And I love sunshine.

Thank goodness I live in a place where the sun shines 350 days out of the year and on February 21st there is a high of 79.

Don’t get me wrong; the summers are brutal. But they are so worth it. When it’s cold, my joints ache, my muscles hurt, my blood doesn’t circulate and everything just hurts. I want to live in the shower and getting out of bed in the morning is the worst way to start the day. I have no doubt these times are reminders to appreciate the sunshine.

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