KALYDECO!!! and My passion =)

Describe a Passion you have - Day 18

Of course I have many different, very deep passions. I am a very passionate person and everything I do is because of passion. I think my passion changes daily; maybe even hourly. It truly all depends on my mood and what stikes me as the most important thing at the moment.

Why do I think this?

Because this morning as I was babysitting and the little one was watching her morning cartoon, I wrote out a blog about my biggest passion in life being working with children and helping them. My second biggest passion was just helping people in general. And I had my third biggest passion as finding a cure for CF.

But I think that has all just went down the drain tonight.... I think my number one passion, for the moment, has changed....

Why do I say this? What changed my mind?

Well because I am beaming with excitement and hope because KALYDECO WAS APPROVED BY THE FDA!!!!! (This is a new CF treatment that is LIFE CHANGING! - I will talk more about Kalydeco further down)

So one of my passions? Finding a cure for Cystic Fibrosis. Helping people who are fighting CF live a better life. Working with families who are struggling financially to get treatment for their loved one. Supporting those going through the transplant process needing to raise hundreds of thousands of dollars. Spreading awareness about Cystic Fibrosis and getting it noticed.

I want to make an impact; not just a little one - but a big one. I want to help. I want to change lives. And more than anything I want a cure to be found.

Ever since I joined in the battle of fighting for my husbands life about 5 years ago I have been passionate about raising money and awareness for CF. I've raised money for Great Strides. I've done my best to share projects and videos of CFers to help spread awareness. I've been trying my hardest to share and spread the word about The Moganko Project so CF can be spread to a bigger audience. I didn't want to see my husband suffer and struggle for every dang breath he took. I wanted to go out and live out lives instead of being stuck inside and in the hospital nearly every day. I wanted to be "normal". I was envious of those CFers who had better health than Spencer. We desperately needed something more for him, something I could not alone give him - but, unfortunately, it just wasn't available in Spencer's much-too-short life span. When he was sick for those last 4 months in the hospital, my sole concentration was raising money for him to get a transplant and to help him succeed in his therapies and treatments and to keep him positive. I had no view outside of saving my husbands life. My passion for helping other CFers and their families got buried.

Spencer's passing put a new spark of life into me. It resurfaced my passion to help others living with CF fight, survive, and thrive. I made SO many friends with CF or related to CF in some way this last year and I am determined to help them so that they do not go down without a fight. Since I lost Spence, I have been very driven to use what money was left over from medical and funeral expenses to help others going through the transplant process, and needing a boost financially to help with treatments and medications. I want to do whatever I can to help. I just need to find the right way in going about this - but it WILL happen.

I have thrown myself into trying to figure out new ways to spread awareness about CF and try to raise money. All of this is a work in process an won't happen over night. but it will!

And then today's news of the FDA approving Kalydeco THREE months early... Wow.

That fueled my fire even more. Gives me an even bigger passion for fighting for my lovely CFers.

Kalydeco is a new treatment for CF that treats the root cause of CF. It targets the cells. This is breakthrough for the CF community as it is the first medication to do this. This is a HUGE step towards finding a cure.

We

are

so

close!!!!

The thing about Kalydeco is that it only treats a mutation present in 4% of the CF population - that is great news for them! But it also leaves 96% of the CF community without this life saving and changing medication. They are still working towards developing a treatment for more common mutations. But these more common mutations prove harder to treat and it is VERY expensive.

Did you know that the Cystic Fibrosis Foundation gets NO government funding?? Every single penny that is used to produce treatments, help, research, and eventually a CURE comes from those affected from Cystic Fibrosis in some way whether it be the patient, the caregiver, the friend, or the families. It is ALL up to the public to fundraise to raise this money. I heard that it takes approximately $12,000 with every HOUR of research that is done. WOW! That is a heck of a lot of money. And that is why it is SO important that we raise funds. We cannot get to a cure without doing so.

These reasons are just a few of why I am SO passionate about this. I know, I know... I went on a spiel about all of this - but I hope you learned something about CF, Kalydeco, and myself.

Want to help out? Donate to the Cystic Fibrosis Foundation. www.cff.org =)

Excedrine - Day 15

Something you don't leave the house without - Day 15

I'm going to say - Excedrine. I've definitely learned that if I am going anywhere more than about a mile away to take migraine medication with me! I've been in WAY to many instances where I've been at school, on the road, with my friends, etc and have been struck suddenly with a super bad migraine. I have to take it at the VERY first sign of one or I'm in pain and miserable within minutes.

I've been thinking about this for a little while because it seems like every time I leave the house it seems I take something different, or don't take something at all. I would say I take my phone everywhere, which used to be true when I was married. (Was married... uhmm hate that.) But right now I just don't have a whole lot of interest talking on my phone and I only really talked to my mom and Spencer. It gets overwhelming and I feel more at-easy, less anxiety, and more comfortable when I don't have my phone with me, or when it is off. At least for now.

I don't really even take my purse everywhere... And I don't take my wallet everywhere. Sometimes, if I'm walking, I just stick some money in my pocket. It makes it easier. And I don't always need my purse!

Guess Excedrine it is! =)

3 of my favorite shows - Day 14

Day 14 - A TV show (or shows) you're currently addicted to

There are three, possibly 4, shows that I just can't get enough of!!!!! And these are in no particular order because these 3 make me laugh so much and I think they are all equally as good!

Up All Night:

Whitney:
New Girl:

And the show that I tend to love yet hate:

Switched at Birth

Yes I think it's a good show but the stereotypes drive me crazy!!! How how ignorant the hearing are of the deaf, different cultures and backgrounds.... But I love it because I think ASL is a beautiful language and I never get to see it used. And I guess the drama tends to pull me in, of course.

I watch all of these shows online since I don't watch TV very often and usually when my shows are on - everyone else's is too! Not to mention no one knows how to be quiet while I'm watching! ;-)

Quotes and Verses - Day 13

A few of your favorite quotes, mottos, or versus - Day 13

Oh boy! I have so many. There have been a few that I have always liked, but when Spencer was in the hospital for so long I had many verses and quotes sent to me and I looked up several that would help get me through. Good thing I have a document to make this easy on me. I'm just going to list (mostly) them all =) I don't see why not! It's good for me to read and remember all of them!!!

Quotes:

*Everyday may not be good....but there is something good in every single day.

*I am determined to be cheerful and happy in whatever situation I may find myself. For I have learned that the greater part of our misery or happiness is determined not by our circumstance but by our disposition --Martha Washington

*When you feel like giving up, stop and remember why you held on for so long in the first place

*You're braver than you believe; stronger than you seem; and smarter than you think!

--Winnie The Pooh

*The brick walls are there for a reason. The brick walls are not there to keep us out; they are there to show us how badly we want something --Randy Pausch

*We are made strong by what we overcome. --John Burroughs

*Success is counted sweetest by those who never succeed. --Emily Dickens

*However mean your life is, meet it and live it; do not shun it and call it hard names. It is not as bad as you are. It looks poorest when you are richest.... Love your life, poor as it is. --Henry David Thoreau

*God allows us to experience the low points in our life in order to teach us lessons that we could learn no other way. --C. S. Lewis

*One life on this Earth is all that we get, whether it is enough or not enough, and the obvious conclusion would seem to be that at the very least we are fools if we do not live it as fully and bravely and beautifully as we can. --Frederick Buenchne

*We must be willing to let go of the life we have planned so as to have the life that is waiting for us. --Joseph Campbell

Verses:

Fear not, for I am with you; do not be dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand --Isaiah 41:10

So that your faith might not rest on men's wisdom, but on God's power --1 Corinthians 2:5

Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. --Matthew 7:7

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed! --Deuteronomy 31:8

Lay your hands upon the sick and they shall recover. Return not till I, the Lord, shall send you. Be patient in affliction. Ask, and ye shall receive; knock, and it shall be opened unto you." --D&C 66:9

...whatsoever you seal on Earth shall be sealed in Heaven; and whatsoever you bind on Earth, in my name and by my word, saith the Lord, it shall be eternally bound in the heavens; and whatsoever sins you remit on Earth shall be remitted eternally in the Heavens; and whatsoever sins you retain on Earth shall be retained in Heaven. --D&C 132:46

If thou wilt do good, yea, and hold out faithful to the end, thou shalt be saved in the kingdon of God, which is the greatest of all the gifts of God; for there is no gift greater than the gift of salvation. --D&C 6:13

For he that diligently seeketh shall find; and the mysteries of God shall be unfolded unto them, by the power of the Holy Ghost, as well in these times as in times of old, and as well in times of old as in times to come; wherefore, the course of the Lord is one eternal round. -- 1 Nephi 10:19

So there you have it... those are most of my favorites =) Enjoy and I hope maybe that some of them speak to you as they have me.

Widow and Sucky - Day 12

Your current relationship and if single discuss how single life is - Day 12

Well I guess this is basically saying, what is your relationship status and how is it.. lol Something I definitely don't care to think about, but something that comes up in every day life.

My Relationship Status: Widow

How is it?: Sucky

At first it was always the word 'grieving' that got me. I hated hearing that word. But then I got used to the word grieving (probably after getting over a little bit of denial...) and started searching for books on grieving for spouses and came across the word "widow". It then kind of hit me... I am a widow. A widow at 21 years old. Widow was the new word that just struck me the wrong way, always. How sucky is that. I came across a wonderful support group for young widows and reality has definitely started to set in that this is my new relationship status.

When I fill out forms at the doctors or anything like that, I have to mark widow. I'm definitely not looking forward to that.

Sometimes I feel like the term Widow defines me and I hate it. I don't want to be classified as a widow - but I will be for awhile. The real question is - when does that term stop? I am always going to be Spencer's widow.... but when do you consider yourself single... when do you mark on the forms that you are single? Just an interesting thought, I suppose. Right now I'm not going to let it concern myself... but it's one of those things that you know is going to come up in the future.

I don't know - I guess those are just a few thoughts on being considered, legally, a widow. It's really sucky because it's a fresh reminder that your spouse died. I definitely miss Spencer. I miss him more than anyone could imagine. so it's all hard - but I'm getting through day by day. Each day seems to get a little bit harder. One day more that he's been gone. But I do have my good days and sometimes just my good moments. I thrive and I live for those. Spencer has been creeping up in my mind more and more, and he's pretty much constantly in my thoughts. I'm just taking each moment as it comes and I'm trying to be as expressive as I can with how I am feeling.

So I guess that's my take on today's 30 days of blogs.. I feel like this has definitely been a bunch of random words - but I hope it fit together nicely for those of you who are reading! When it comes to talking about my loss... I find it really hard to put into words!

What's in my purse... Day Eleven

What's in your make-up bag/purse - Day 11

My purse was handy so I'm going to show you what I keep in my purse:

I have:

A list of fabric I need for different projects

grocery list

2 packs of kleenex

Hand sanitizer

Excedrine and Ibuprofin

Mio (fruit punch)

Eos chapstick

mini flashlight/laser

bandaids

2 AAA batteries

Gum

Gum wrapper

2 pens

Wallet

my Book - Slipping Reality (VERY good, just about finished!)

And here's my cute purse =)
Love the lining on the inside! =)

Olive Garden - Day Ten

Day 10 - A photo of your favorite place to eat

I'm pretty sure my favorite place to eat in Olive Garden! I love the food and I have had a lot of good memories there with friends and my husband. In high school I was part of the choir and we did a mixed ensemble a lot for contest. When we would get a 1 we would travel to the state music festival and sing. Well the night before, a lot of the times, we would go to Olive Garden. It was just a tight group of friends having a good time!!! One time we even got asked to sing acappella in the restaurant!!! It was pretty embarrassing but looking back on it it was a lot of fun!

Also Spencer and I had our Valentines day date there every year =) We also went on a few dates just for fun to Olive Garden. Always having a great time!