There is a company called Rare Patient Voice that does surveys and interviews for people with rare diseases about their medical care, quality, and services. This is not just for people who have the condition, but also for their caregivers. Each time you fill out a questionnaire or survey, you get a bit of financial compensation.
When you first sign up, you get a $10 Amazon gift card. Then anyone who signs up and puts your name as a referral, you both get another $10 gift card.
I just received $20 because I signed up and then my husband signed up under me. I haven’t taken any surveys yet, so I’m not sure how much compensation you get for each one, but this is really legitimate in what/how much I’ve gotten so far.
The diseases that qualify as “rare” are:
Bleeding Disorders
Multiple Sclerosis (MS)
Cystic Fibrosis
Sickle Cell Disease
Huntington's Disease
Pulmonary Arterial Hypertension (PAH)
Waldenstrom's Macroglobulinemia (WM)
Lupus
Gaucher
Duchenne Muscular Dystrophy
Hepatitis C
Crohn's Disease (I’m guessing UC counts as well)
If you think that either you or the person you care for has something that qualifies as rare, you can apply here, and then explain why you think you qualify. (If you do decide to sign up, I’d love it if you put Tiffany Thomas as your referral so I can get credit for it!) -Tiffany
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I got onto the elevator with my 4-year-old’s hand clasped in mine. He was so excited to go on a little outing with Mom. I was happy to be spending some one-on-one time with him, too. And it was shaping up to be a wonderful day.
Then I glanced at the two other gals in the elevator with us.
They were so put together. Cute clothes, beautiful hair, flawless makeup… the exact opposite of me.
I’d been running short on time that morning and my attire consisted of a sweatshirt, yoga pants, tennis shoes, a messy ponytail, and no makeup.
Yep, I was the epitome of style. Ahem.
As I began comparing my frumpy looks with these two adorable women, my earlier joy started slipping away.
Why couldn’t I get my act together this morning? Why am I so often resorting to ponytails and sweatshirts? What is my problem? Why can’t I be pretty, cute, and put together like so many other women?
Then I looked down again at the little boy holding my hand. He could care less what Mom is wearing; all he cares is that Mom loves him and is investing in him.
Yes, I want to take a little time to look presentable each day, but spending time on my outward appearance at the expense of moments with my kids is always a choice I will regret.
So you know what I did? I held my head up high, held on tight to my son’s hand, and wore that sweatshirt with pride. I may not ever be nominated for Fashionista of the Year Award, but my kids don’t seem to mind.
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It was a busy and pretty exhausting week, but we’re all moved in and only have a few boxes left to unpack — YAY!
I’m excited to get back to a more normal routine this week! I pretty much bombed my goals list, but I’m going to be okay with that since it was moving week and all.
9. Finish tweaks/edits on a new project we’re working on.
10. Answer all the emails in my to answer file (I dumped all non-urgent emails into a file while we were moving!)
How did you do on last week's goals? What are your goals for this week? I'd love to have you share your progress on last week's goals and your goals for this coming week in the comments. Of, if you've blogged about it, leave your direct link below. Let's cheer each other on to live purposeful and productive lives! You can download a free customizable weekly goal-planning sheet here.
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Move! 
