22 September 2015

Cystinosis Strong Challenge!

I have been so motivated by September's #cystinosisStrong challenge that my dear friend Jessica created. I'm so excited! I was inspired by news that largely due to the success of the ALS ice bucket challenge, they are now on the verge of a cure for ALS. How amazing is that?!

It would be such a dream come true for this challenge to go viral and for the same to happen for cystinosis.

Here is more about it, in her own words on the Facebook Event Page

There is still time to join the ‪#‎cystinosisStrong‬ challenge!! As a reminder, here are the steps:
1. Snap a picture representing strength and upload it with the hashtag #cystinosisStrong. (If you want to be entered in the weekly drawing, I have to SEE your photo! So if you aren't friends with me, you'll need to make the photo public or post it here - that way it will show up when I search by hashtag.)
3. Challenge a friend or two and help share awareness of muscle wasting complications of cystinosis!
Thank you for helping with this cause.

On the first day of this challenge, I shared the above photo, because no makeup and snuggles? Yes please!
At 32, I am ‪#‎cystinosisstrong‬ because I am a mother, a writer, a wife, a business owner, a blogger, a daughter, a friend, a crazy cat lady, an aunt, a human in motion, a soul chasing down dreams. Every day I get up and decide to push myself further, even if I don't feel like it.

Today? Today I am #cystinosisstrong because this month I am focusing on doing things outside of my comfort zone. Yesterday was a no good very bad day, but today is a fresh start. I'm ready to move forward and shake off frustrations. How gorgeous is this view from my walk this morning?

Come join the #cystinosisstrong challenge on Facebook! There are nine more days to share your photos!

18 September 2015

Medisafe App Medication Reminder

I received compensation for my work on this campaign. This post was made possible by Mom Spark Media. Thoughts are my own.

Several weeks ago, I made the silly assumption that our lives would slow down once our daughter started kindergarten. I think I'm realizing that it has been quite the opposite. As I'm juggling writing, teaching, and running my Today Is A Miracle shop, I'm always on the look out for tools to help streamline our days and assist in making our lives easier.

As I am in my early 30s now, it is hitting me as clear as a bell that everyone in our family is happier when momma is happy and taking care of herself. Sometimes that is more of an effort than I would like to admit though.

Most days my life looks like this, in a snapshot. Messy, chaotic, happy, busy, free.

What you don't see is me setting our oven timer for roughly every thirty five minutes or so when we are home so that I can aim to get at least ten doses of eye drops in a day. I don't like to take them with me everywhere and do my best to get a bunch of doses in when we are home, instead of every hour on the dot. Sometimes I'm running around, trying to remember what supplements I still need to take in the morning, in the midst of getting water bottles ready for kindergarten and jackets, shoes, etc, etc.

And here is where Medisafe comes in!

The Medisafe app was created by people who actually have experience living with chronic health conditions and seeing how complicated it can be to stay to a strict schedule while still living your life. The founders created this app to help their father better manage his diabetes on his own. You can read more about the story behind the app on their website. It has even been featured in the LA Times! So you know many people are trusting this app with staying on top of their health and wellness! They have many great posts on their blog full of inspiration and motivation!

I loved many aspects of this app! Including the fact you can connect friends and family with it for encouragement, or if you want a backup of a real person reminding you to take your meds. Something that makes this app unique is that you can truly personalize it to fit your own unique medical needs. It is so much more than simply a pill organizer!

Because Cystagon, my main medication for treating Cystinosis and basically the most important medication in my arsenal, is a speciality medication and not something I can simply run to the store to get, it was refreshing that it pulled right up when I started typing it in and I didn't have to add it manually. This was a big suprise for me and a huge plus if you have rare medications that aren't usually included in the norm.

Cystinosis is a complicated disease and while I am on the least amount of medication I have ever been on in my life, I really liked that this app can grow and change with you as your healthcare life evolves over time.

Another bright point in my experience is that Medisafe is user friendly with a crisp layout, including nice colors that aren't obnoxious.

If you are interested in downloading the app for yourself, here are the links! Two million people are currently using it, so you know it is useful and can be trusted!

Android users can download HERE
iPhone users can download HERE

I received compensation for my work on this campaign. This post was made possible by Mom Spark Media. Thoughts are my own.