Tuesday, January 31, 2012

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.

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 =)

Monday, January 30, 2012

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! =)

Sunday, January 29, 2012

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:
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! ;-)

Saturday, January 28, 2012

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!!!

*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

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.

Friday, January 27, 2012

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!

Thursday, January 26, 2012

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
2 AAA batteries
Gum wrapper
2 pens
my Book - Slipping Reality (VERY good, just about finished!)

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

Wednesday, January 25, 2012

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!

Tuesday, January 24, 2012


I have a few thoughts on my mind that just won't go away - and so I've made the decision to write. Mainly what has been bothering me is issues dealing with insurance... After I'm done with that we'll see what else I have to say.

First off, insurance. I have not had "real" insurance ever since I turned 19, I believe. I was put on the University of Utah student health plan when I started college. So I had insurance, but definitely not at the magnitude that I needed it.
I have Crohn's disease and I am supposed to get an annual colonoscopy to check the general health of my colon, if I have polyps, if there might be cancer, if I have inflammation or ulcerations, and to remove polyps that might be there. This is really important because if something goes untreated it could get serious, very fast. But in order to have a scope, what do I need? You guessed it, insurance. I had a scope a couple of summers ago and student health insurance backed out at the last minute for paying for it so alas I was stuck with the entire bill which is now in collections because I can't even begin to pay it. Also - along with my Crohn's disease - I am supposed to be on medications. If I'm sick of course I need to be on meds, but if I'm in remission, it's equally important to be on a maintenance therapy - in my case probably back on Humira or on a "new" biologic called Cimzia. Well one injection costs thousands of dollars and you have to take them every 2-4 weeks. I cannot afford to be on medication but I can't afford NOT to be on medication. I haven't been on IBD meds for about 3 years now and it makes me nervous that I'm going to get really sick. But
I can't even afford to go to the doctor =/ I just don't have that kind of money. It's really not a good or favorable combination. I've just been trying to do the absolute best that I can with my diet and trying to keep my stress as little as I can - though that's been hard lately.
And this brings me back to the issue with insurance. I can't get private insurance because I have a lovely thing called a preexisting condition. Most insurance companies won't accept me. And if they do - they raise the premium up a couple hundred dollars. I simple CANNOT pay 500 to 700 dollars for insurance. I don't even make that month a month and when I'm working full time, I'll barely be getting by with rent, food, utilities, gas, and other absolute expenses. So private insurance is out. Sure maybe some day I can get insurance through my job - but the problem with that is it's usually still very expensive, especially on the income that I would make. Plus I will not be working for any company any time soon that is going to offer me insurance. Not to mention in most cases you have to be working full time - when I get back into school, I cannot work full time. Yes I do realize that not all places require you to work full time for insurance benefits, but my point is that I'm pretty sure my premium is going to be more expensive than what I could ever afford. So I'm just kind of screwed.
Now right now, sure I might be able to get on medicaid. But what happens when I start working full time to pay off my debt in order to go back to school? Exactly. I will then suddenly make too much in order to qualify for Medicaid. So what does that leave me with - a whole lot of NOTHING. And that just sucks. And not to mention it is simply not at all fair. I want to contribute to society.... I want to have a job, to work, to even pay taxes (just because that's all a "privilege" of working) yet if I DO contribute to society - I can't get the personal help that I desperately need, ie. insurance. But I don't contribute to society I can easily get Medicaid and have other people pay for me to live. Though I won't be able to survive on my own due to rent, food, bills etc.
Absolutely ridiculous.
So of course I can get insurance from my parents until I am 26. That would give me 5 years to figure out my life, finish college, and get a job. Plenty of time. But my mom can't even get insurance!!!!!! My dad is on disability and medicaid because he can't work. My sister is on medicaid because she's a kid. But my mom. Well my mom works her butt off 5 days a week (and sometimes 7 days a week!!) yet in order to insure JUST her it would cost her over $300 per paycheck (total of $600 a month for JUST HER!!!!?) and she doesn't make much more than that per paycheck... only $600. That'd give us 300 bucks for food, gas, and bills every 2 weeks. Not going to cut it.
Oh but wait - to insure the entire family.... it would cost her a little over $500 per paycheck(over a thousand a month to insure everyone). That would leave us only $100 for two weeks. No. Not even possible. Gas alone to get her to work costs 3/4 of that.
So not only can I not get on my moms insurance.... my mother cannot even get her own insurance. Oh and she can't qualify for medicare because she makes too much!!!!! to get annual checkups... to get screenings for things that she might need. I can't even comprehend how that is fair?! IT'S NOT!

I also want to throw out there that I have realized that I am suppressing a lot of my feelings with Spencer's death. I have come to the conclusion that I really would benefit from seeing a grief counselor. well never mind the fact that specific grief counselors don't exist around Bird City, KS, or even a couple of hours away from Bird City, Kansas... but If I want to see a regular counselor that somewhat handles grief... I have to pay a minimum of $70 PER SESSION... -sigh- Just add that to everything else I need to pay for. So not only can I not get the health care I need for my Crohn's disease, I can't get the help I need for my grief.

(sidenote: Yes people have told me to call hospice and see if they offer any free services and I plan on doing that when I feel ready to make that phone call... and I'm telling all of you who haven't been to my small town that it is VERY VERY small and all the towns beside me are VERY VERY VERY small and there just simply are no sources around here unless I travel 3-4 hours, sometimes more...)

So I'm pretty much assuming that I'm going to be in debt for a heck of a long time because in order to get screenings for my own health to make sure I don't die of cancer that I am multiple times at risk for I am going to have to pay for it all out of my pocket..... because as of right now.. I cannot in ANY way shape or form afford health insurance.

It's really screwed up. I can only hope and pray that things will fall into place and in some way I will be able to get health insurance without being in debt with monthly bills... but as of right now - I can't get the colonoscopy I am over a year overdue for.... I can't get the blood work I need to make sure all my levels are in check. I can't take any medications to make sure that I don't get sick. I can't go to the doctor to understand why I am getting daily migraines.

Please tell me.... how is this fair?

Milk, Eggs, and Peanut butter - Day Nine

Day 9 - A photo of the item you last purchased
Well I thought I could do this fun picture of a bunch of miscellaneous things from my last trip to WalMart. But I went to the store yesterday and purchased this:

Milk, peanutbutter, eggs
and then cups and plastic spoons to make some rainbow cupcakes =)

Monday, January 23, 2012

Tonight by FM Static - Day Eight

Day 8 - A song to match your mood

So I've been thinking of this for a few hours now, wondering what song I should post. And this song popped into my head so many times. I guess it really does reflect my mood the majority of the time. It makes me happy thinking about my history with Spencer, and then it also reflects how I feel since he's gone. It has always been kind of "our song" with me going back and forth to Kansas and Utah. I've also had A LOT of nights where I just feel completely lost and don't know what to do. I just feel like it describes everything PERFECTLY right now. *Cue tears, again... didn't intend for this to make me cry!*
So here it is:
Tonight by FM Static

Sunday, January 22, 2012

Dream Wedding? Nahh - read more! Day 7

Your dream wedding - Day Seven
This definitely isn't my favorite one to post about. I've already had a wedding - and it was pretty dreamy.
I do have to say this. When you're dating, and even engaged you dream of you absolute dream wedding. You have details planned out to the extreme. You know exactly what you want and what will make you happy. And after Spencer and I got engaged I dreamed about the fanciest venue, the best food, the coolest back drops, and a reception that looked like one of my HS proms.... But of course that didn't and couldn't happen.
Having been through a wedding in the past... Almost 8 months ago, I can say that even though my wedding did not include every detail I wanted, the location I wanted, the people I dreamed would be there - I can say it was just like a dream wedding. It was perfect.
It was what we could afford, those who meant the most to us where there, the colors we wanted were used, the food we chose was served, the reception was so fun, we had our favorite DJ, and I married the man of my dreams. Sure - if I wanted to be picky, and even greedy - things could have been different and even in some aspects better.
But the most important thing was that I married my very best friend, my soul mate, the love of my life. Those little tiny details I was stressing over leading up to the wedding, and the little things that I thought were going to make a huge difference, they didn't even matter. I barely even remember them.

What do I remember most? - the friends who actually showed up, my family, and most importantly looking into Spencer's eyes and seeing him the happiest he'd ever in his life been as well as being completely caught up in the moment myself and being the happiest girl on the Earth when I promised him to be by his side for the rest of his life. In which I can very proudly say that I was even though times were insanely hard.

Lets face it. I will never be able to afford a true dream wedding of mine. It's simply out of my budget and future husbands budget (and I say future husband by meaning if I ever do get married again, in which I don't have much doubt I will.. I am 21, I want a family, and it is my DREAM to have children. Spencer told me he wanted me to find love again - and I plan on doing just that.... when the time is right many years from now even though it's going to be very very hard and it will never match what Spencer and I had.... just wanted to get that clear) I cannot afford a $10,000 dress I will wear once. I can't afford a 2-5K cake. I cannot afford a destination wedding and fly my entire family, wedding party, and friends there... It just can't happen - and I know this...
So instead of getting caught up in these unrealistic fantasies of what my "dream wedding" would consist of, I am going to say this......

My dream wedding will happen when I find the (2nd) man of my dreams again. When I find a kind of love I have only felt once before, and even then it will be a different kind of love. My dream wedding will be with those who mean the most to us. It will have the elements that we can afford and that make us happy... even if we have to save up =)

There you have it... sorry if you are disappointed - but I really don't want to plan out another wedding ;-) My heart is definitely too raw right now to think about that sort of thing!!!!!!

Saturday, January 21, 2012

Capuchin Monkey - Day 6

Day Six: A photo of an animal you'd love to keep as a pet

Well I'd like to keep lots of animals as pets but I've always loved these little guys:
Capuchin Monkies - aren't they CUTE! =)

Friday, January 20, 2012

Nacho and Chloe- Day 5

Day Five - Talk about your pets
My one and only pet right now is Mr. Nacho. We kind of have a love/hate relationship. See Nacho was Spencer's buddy through and through. He loved me some times, but doesn't so much other times. Now we tend to have 'conversations' in where I will talk to him - and he will growl back at me. He's definitely associated me with all the negative things since Spence was in the hospital all of the time. I would be the only one to discipline him. I would always leave him alone, or take him to places he didn't wanna go. So I'm kind of the 'bad guy' right now. But either way - I love Nacho. He's a little piece of Spencer <3 Here's some pictures to enjoy =)

Here he's riding in the car with me to go and visit Spencer. Nacho LOVES car rides!!!
And here he is visiting Spencer in the hospital. He got to stay the night sometimes =) I just love this picture. It always made Spencer laugh!
And this is a picture that Arielle took! He's so cute!
And of course - I just can't leave out Chloe. Poor chloe. She was MY kitty. I bought her and cared for her. Well Spencer got her for me - but we used 'my' money :-P hehe. Sadly we don't know what happened to her. When we moved out we weren't allowed cats and so my parents took her in. They let her out one day and she never came back =( Sad sad. She was a great kitty! Here she is sitting on her food. Yes - she was kind of a food hog! :-p
Tell me about your pets!!!! =)

Overwhelmed with debt...

I am only 21 years old and I have an astronomical amount of debt going on already. Unlike most college students it's not from spending money frivolously or debt on a credit card. It's not from bills that I just forgot to pay, or from payments on things that I don't really need. I've actually taken very, very good care of my finances and unfortunately this debt is completely out of my control. That's whats so frustrating.
Nearly every college student has debt from student loans. I've been fortunate to have only needed to take out of the subsidized loans so I don't have to pay anything while in school, and I have a 6 month grace period from when I stop going to school. I can also apply for medical deferment since I have a lot of medical issues and medical related debt to pay. Yes - I'm thankful for that. But I already have $24,000 in loans that I've used to help get me through school and life. That's a super big number for me! So far we're up to $24,000 in debt (longer term, since it can wait)

I had to withdraw from classes last semester because of Spencer declining so quickly. There was just NO way I could have ever kept up with my classes. But because I withdrew, I still have to pay for the classes - and financial aid (ie my grants) got withdrawn because I was no longer full time. So therefore I owe the university over $4,000 for my classes last semester. I wanted to move back to Utah and go back to school in the fall but I can't attend classes again until I pay back what I owe. So it's looking like sure I can move back, but I will have to work full time until I get enough money to completely pay off what I owe.
Of course I could save up money right now while I am living with my parents and have a part time job. For what I am doing and around here - it's good pay... but it's really not a lot when I start to consider everything that I have to pay for. I'll barely get $2,000 from this job in total before I move back to Utah. I have to use about $600 of that for food and about $500 for the phone bill. -sigh- So that doesn't leave me with much left. PLUS I really want to do something for ME. I need a break. I feel like I deserve it. And so I wanted to travel a little bit this summer... just to get away and set my mind free. to set ME free. But it's hard to actually allow myself to do this when I see all the debt I have building up.

Now for the 3rd thing I have to pay off... because of my Crohn's disease I am supposed to get colonoscopies once a year to make sure that I don't have inflammation or ulcerations, to make sure there are no polyps and if there are to remove them, to check for strictures, and to check for any cancer. They actually, are pretty important since I've had Crohn's over 8 years. Well I had a colonoscopy a couple of summers ago thinking that my student insurance would cover the majority of it. I also had some biopsies done and a bunch of blood work done. I knew I would be left with a little bit to pay, but didn't think it would be much. Long story short - at the last minute they backed out of paying for it so I have well over $2,000 in debt from a scope that I NEEDED. (and trust me I tired to fight all of this... It's all just crappy student health insurance that doesn't work when you are chronically ill...) I tried to pay what I could every month but they told me it wasn't enough and then sent me to collections. So I am getting dinged with a lot of interest on MY medical bill. It could very well be over $3,000 at this point =/

So that's a total of $7,000 that really needs to payed off. The school debt is the most important to me, though because I WANT TO GET MY DEGREE!!!!!

Now I am getting bills for Spencer's hospitalization in the ICU. Can you believe that it totaled just shy of $800,000. We were only lacking $400! Thank heavens he had really good insurance... I am stuck with $220.00 for this bill. Out of nearly $800,000. Honestly - I can accept that.. But I am just upset that it falls in my hands. I don't exactly what this is for - what insurance didn't cover - I need to call them... but even though it's JUST $220 - that adds up and it's hard to pay when you just really don't have much income. They want a minimum payment of $75 every month. I guess maybe I could do that - but it doesn't leave me with much left over for food and my cell phone bill (still having to pay for Spencer's too unless I want to pay over 200 dollars to cancel it. ugh).

Spencer has some debt on his line of credit at the bank as well. We were doing our best to pay it off while he was alive. We couldn't give much but we made the monthly payments we were supposed to. That was with his income. Now that he's gone I'm stuck with about $600.00 that I still need to pay off. And no this wasn't any kind of frivolous purchase either. It was a mistake that was made while Spencer was drugged up and really had no idea what he was doing..... Ugh LONG story.

Do you see where I'm getting. I'm COMPLETELY overwhelmed. I'm REALLY upset that I have all of this debt - and especially since over $2,000 of it is in collections. My credit score is probably absolutely terrible. I have done nothing to build it up - I've never had to pay for a credit card or rent or really anything good that reflects my credit. So it's already going down. I can't AFFORD the monthly payments they want me to pay. I don't know what to do.

How am I supposed to get anywhere in life with this burden. I just want to start fresh and build a life for myself. How am I supposed to get an apartment with no credit? And BAD credit at that.
I just don't know. I mean I know there are ways around things - but I just want to be INDEPENDENT! =(

I don't want all of this debt burdening me. I want to be free =/

I just really needed to vent. I'm frustrated.

EDIT: Getting this out made me feel a lot better... I know that I'm not completely stuck and things can turn around, yes. I was just REALLY frustrated and overwhelmed at the time. As I said - I'm feeling much better now...

Thursday, January 19, 2012

Best Friends - Day Four

Day Four - Your favorite photograph of your best friend(s) -

I have four/five very, very best friends whom I can ALWAYS count on. I don't ever have to worry about losing them. I just don't feel like I can leave one out!
The reason I have chosen these people is because they have all been here for me unconditionally, always, without a doubt. Calling me, texting me, messaging me, dropping by to see me when they knew/know that I'm upset or needing some company. Their support is unwavering.
And don't get me wrong - I have SO many very, very good friends as well. =)

First picture - My sister. My sister is one of my best friends. Of course we fight sometimes, have a few different views, and of course constantly get on each others nerves, I couldn't ask for someone more loyal than my sister. This is one of my favorite pictures of us because it describes our relationship perfectly!! HA! We're always being goofy. Constantly laughing so hard that we cry, and sometimes crying so hard that we laugh. She's always here for me - no matter what, and I truly hope that she can say the same about me. Love you sis!
Emily came into my life through starbright world! =) We would talk and talk online and I was lucky enough to be able to go out to San Diego one summer and spend time with her. She understands the ins and outs of illnesses and really gets it when others just don't. She's always by my side. If I could have one thing different - it would be her living closer to me! Love you Emily and thank you for being the BEST Googly ever!!!! =)
There is just TOO much to say about these two. Adam and Christine. Where do I even start. I am so thankful to have them in my life. Christine and I know each other through the CF community - she is a CF wife as well. When it came to health with our hubbies, she was always my go-to. We joke around and say that I am her mini-me =) We have SO many things in common; more than you could imagine! When Spencer got really sick I got to know both Christine and especially Adam very well. They were always just a phone call or text message away. They had me over for dinner while the ICU was closed to visitors. They let me stay in their house overnight so that I could be close. They dropped anything that they may have been doing to come and help me through my time of weakness. Adam gave me a blessing when I needed it most. These two emulate the definition of a true friend. I just hope that someday I can give back as much, if not more, to these two. They deserve the world and more. Such kind hearts and caring attitudes. I love you guys now and forever. I only hope we can continue to grow our friendship together. <3 This is my favorite picture of them because I know it was the happiest day of their lives!!
Last but certainly not least - Spencer. I won't write much about this friendship because most of you reading know how much he meant to me and how close we were - and not to mention, I can already feel my emotions starting to creep up. Yup tears in my eyes. Spencer was absolutely my soul mate and very, very best friend. I went to him for ANYTHING and EVERYTHING. I am so, so devastated I don't have that in my life anymore. I miss his absolutely terribly. He was the bestest friend, the most wonderful husband, and the love of my life. I hope that he is taking the deepest breaths that he possibly can. I miss you, Spence. This isn't my most favorite picture - I don't know if i have a favorite, honestly. Every single picture that we took together I cherish so so much now. Every picture is my favorite.
Who are YOUR best friends?! Link your blog up in the comments! I want to know more about you!!! =)

Wednesday, January 18, 2012

Group Dates - Day Three

Day Three - Your idea of a perfect first date
Wow! I really haven't ever been on a date, believe it or not. I don't have much experience in the dating world, let alone the first date! But I love group dates! I think they are SO much fun and it takes a lot of the pressure off of you and your date. If you aren't sure what to say or are shy - you have friends there to help start conversations. I think it brings an extra element into your date if you have others there with you.
So I think my idea of a perfect first date would be with 2-3 other couples. I know, might be lame to some :-P But I think I would feel more comfortable that way. I wouldn't know, though because as i've said - I've never really dated!!! Maybe go play mini golf or bowling, something interactive.
If I couldn't get together with other couples, then I would like to go to a movie. That way afterwords we would have something to talk about and I wouldn't have to come up with things to say for several hours :-P

Tuesday, January 17, 2012

PS I Love You- Day Two

Day Two - Your Favorite Movie
Honestly - they should always put plurals at the end of these things! I have a really hard time picking just one on some of them. I don't know if I have a favorite movie. I have about 3 that I really, really like though. So I will share all three.

I admit that I have not read this book - Usually I don't see movies that have come from a book unless I have read the book. I like to know the original story - books are almost always better. And yes - this is on my to-read list this year!!!! But this was a very, very good movie. Even Spencer enjoyed it =)
Music and Lyrics was a favorite the very first time I saw it. The music was catchy and the story its self is just way cute! Hugh Grant is one of my favorite actors (I know - it's been quite controversial when I say that!! ha). I'm not a HUGE fan of Drew Barrymore but I think she does a fantastic job in this movie!
And for probably my number one favorite - P.S. I Love You. Just for the record. Yes, I read this book several years before this movie came out. I fell in LOVE with the book and I was very, very pleased with this movie. I really want to watch it again - but I don't feel like I would be able to sit through it. It makes me cry every single time I watch it. Right now I just feel like it would be too much. Her husband dies from cancer and before Spencer passed I always knew that would be our fate. In my little dream world I really wished that he would write me letters and do special things for me here and there so that when he'd be gone I could find them. But alas I knew that wasn't going to happen, but was still A LITTLE disappointed after Spencer passed that he didn't do anything like that for me. He always told me he wouldn't - good job Spence... you kept your promise ;-)
Some day I will be able to watch the movie again - but for now, my heart is a little too raw. I considered reading the book again. That way I could put it down whenever I wanted - but I think I'll spare my poor aching heart for now and steer clear of it for at least a few more months!!!!

Those are my favorites! What are yours? And if you are doing this blog challenge - link your blog in the comments section! I'd LOVE to learn a little bit more about you!!! =)

Monday, January 16, 2012

Shepherd's Pie - Dinner

Tonight I cooked Shepherd's Pie - and man it was good, and fairly healthy compared to what we usually eat around here! Just took a recipe online and adapted it a little bit!
I just wanted to share and to record it so that I can go back to this recipe. My dad even commented on how he liked it - so you know it's a go-to meal!

Shepherd's Pie - Nikki's Way

1-1.5 lbs ground beef
1/2 small onion
1 C. corn
1 C. peas
1/2 cup diced carrots
3 large potatoes (to make it quicker, use instant potatoes - I did!)
8 Tbls butter (1 stick) ((I only used about 5-6.. I don't think 8 is needed)
1/2 C. beef broth (I made my own by using a beef bullion cube and water)
Salt, Pepper, Oregano, Basil, Garlic Powder - All to desired taste
1/2 cup shredded cheddar cheese

Heat oven to 400 Degrees. Cook for 20-30 minutes (mine only took 20).

1) If using real potatoes, peel and quarter potatoes and boil in salted water until tender (~20 minutes)

2) In medium pan, brown ground beef until no longer pink. Drain grease. Add salt, pepper, oregano, basil, and garlic powder and stir. Set aside.

3) Melt 4 Tbls butter in a separate large frying pan and add onions and carrots. Saute until tender (~10 minutes). Add corn and peas and cook additional 5 minutes, until tender. Add cooked ground beef to veggies.

4) Add 1/2 cup beef broth and cook, uncovered, on low heat 10 minutes. Add more broth as needed to keep moist.

5) Drain and mash potatoes. Add 3-4 Tbls butter. (if using instant potatoes, prepare now)

6) Put beef and veggies into a sprayed casserole dish. Sprinkle cheese on top. Spread mashed potatoes over the top of the cheese. Put into a 400 degree oven and cook for 20-30 minutes.

It serves about 5 maybe 6 people depending on the serving size. =) Enjoy!

Jon Schmidt; All Of Me- Day One

Day One - Your Favorite Song
My favorite song changes here and there - but without a doubt this is my favorite right now! All Of Me - Jon Schmidt. Listen and you will see why - read more below!

I have a pretty powerful connection with piano music. I grew up listening to my mom play the piano all the time. Pieces from David Lanz and her favorite, Yanni. I remember always sitting beside her on the piano bench, mesmerized by her finger movements and the sounds that she was producing. I always wanted to play just like mom some day. No, I still haven't gotten as good as her! Haha. But I started to teach myself the piano with my mom helping me with the basics. I play a lot by ear - it's not exactly an easy task for me but I just sit down at the piano and play something until it sounds right... over, over, and over again until I annoy the heck out of EVERYONE. =) I haven't played the piano in several years, since I moved out, but now that I'm back home I really want to pick piano back up. I want to learn the bottom hand, much, much better and get a lot better at reading sheet music.
It didn't really hit me until I left for college the connection that I have with piano music. I was in the dorm room one day listening to some piano music on Pandora while studying and a huge wave of emotion hit me. I figured it was just a one time thing, I just needed some sleep or something - but every time I would listen to the music emotions would surface. Eventually I started linking this to really missing my family, specifically my mom, and then I realized that it was all linked together.

Ever since then I have been listening to piano music a lot. A few years ago I discovered the guy who's video is above, Jon Schmidt - the God of pianists. Seriously. He's BEYOND amazing. I discovered a piece from Pandora called "Pachelbel meets U2". We had this played at our wedding =)

I fell in love and have since fallen in love with nearly every piece he plays. He has so much passion in his playing and he has an incredible amount of talent. The passion I mentioned - well it's contagious. It brings out my passion for just about everything and makes me want to tackle life head on every single time I listen to All Of Me (The first video posted). It makes me so energized when I hear it and just so full of life. Someone commented on his video that, "Piano's aren't pianos until Jon touches them." I completely agree. He does something truly magical when his fingers touch that keyboard. And the way he just slaps his arm down on the keys and makes it sound amazing.... wow.

He came to the hospital one day to preform a concert for the CFers and I was lucky enough to catch some of it (AMAZING IN EVERY WAY!). It was a couple weeks before Spencer passed away.... To see him perform life and super close was just too good to be true. It was incredible. He did a song playing on his back, upside down. Haha. I have no idea how! It was too amazing for words.
This is another song of his that really has touched me. His rendition of "Can't Help Falling In Love" gets me every single time. It was one that he played at the hospital and it is so very beautiful. Maybe it was just the setting I was in and the timing that I heard the song, but it means so much to me.

Well now maybe this post for day one is turning into you're favorite composer or artist ;-) But I still have to admit - the very first song posted is my all-time favorite. But I just had to share his work. It's beautiful in every single way!

Hope you've enjoyed! These next few days are really going to have a hard time competing with this post I think!

Sunday, January 15, 2012

30 Days of Blogs

Why not try this again ;-)
I saw one of my friends post a 30 day blog challenge and since I've been wanting some reasons to post blogs, I thought this might be a good idea. Now I do have to say before I even start - there are a few topics in which I either don't have a strong opinion about, I don't feel like reflecting on that will be good for me right now, or that I just really don't feel like talking about on my blog - so I have swapped out about 3-4 days with a different blogger challenge that I ran across. But none-the-less I'm excited to do this again!
Here's the topics if you're interested in doing it along with me:
Day 1 - Your Favorite Song
Day 2 - Your Favorite Movie
Day 3 - Your idea of the perfect first date
Day 4 - Your favorite photograph of your best friend(s)
Day 5 - Talk about your pets
Day 6 - A photo of an animal you'd love to keep as a pet
Day 7 - Your dream wedding
Day 8 - A song to match your mood
Day 9 - A photo of the item you last purchased
Day 10 - A photo of your favorite place to eat
Day 11 - What's in your make-up bag/purse
Day 12 - Your current relationship and if single discuss how single life is (this ought to be interesting)
Day 13 - A few of your favorite quotes, mottos, or versus
Day 14 - A TV show (or shows) you're currently addicted to
Day 15 - Something you don't leave the house without
Day 16 - Describe a passion you have
Day 17 - How you hope your future will be like
Day 18 - Five things that irritate you
Day 19 - Your reflection in the mirror
Day 20 - The meaning behind your blog name
Day 21 - A photo of something that makes you happy
Day 22 - A letter to someone who has hurt or OR made you happy recently
Day 23 - 15 Facts about you
Day 24 - A photo of something that means a lot to you
Day 25 - 5 of your favorite movies/books
Day 26 - A photo of somewhere you want to go
Day 27 - What kind of person attracts you?
Day 28 - In this past month, what have you learned?
Day 29 - Something you could never get tired of doing
Day 30 - A photo graph of yourself to day plus three good things that have happened within the last 30 days.

So lets get this started!!!! =)

Thursday, January 12, 2012

Future Plans

A question that I get asked A LOT is, "So what are you going to do now?" It's a great question, but one that the answer changes to on a daily basis. I just thought I'd blog about what my plans are for now but they really do change a lot and I am trying to take things just a day at a time.

As of right now, as many of you know, I am back in Kansas living with my parents. I moved back right after the funeral and this is where I will stay.... for awhile. I have told myself that I need to stay in Kansas with family for a minimum of six months. The reason for this? I want to be able to allow myself to grieve and heal a little bit. Spencer's death has changed A LOT. My whole future is now up in the air. Very little of what I had planned for my future is still the same. I am afraid that if I go back to Utah too soon, I will either do 1 of 2 things... 1) Get myself REALLY and overly involved so that I don't think aout Spencer and my situation. I would end up putting everything to the back of my mind and not letting myself feel how I feel - I don't feel this is healthy. I don't want to go on with my life like nothing happen and then 2-3 years from now really grasp the magnitude of everything.
or 2) Not be involved with anything at all and become very, very depressed and really not being able to function. As i would be grieving - I wouldn't be handling it in a healthy manner and I don't feel that's good either.
By being at home with my parents for 6 months I can get all of the support that I need, and I can allow myself to feel my emotions openly and freely.
I also don't want to jump into anything too soon. By giving myself 6 months - I have those 6 months to evaluate what step I want to take next. None of my decisions are going to be sudden and impulsive. I have my mom to talk things over with to rationalize my thoughts.

So what am I doing during these 6 months... Oh boy. Well so far I really haven't done much. I have a lot of projects that I want to do - but I'm finding them really hard because they involve Spencer in some way, though I am slowly trying to get myself involved with them. I really am just taking it day by day and letting myself feel how I need to feel. I got ask to babysit a 3 year old during the week starting in February and so I will be picking up a job then. I'm really looking forward to it as I need to get a routine started back up and I need to get out of the house. I need to DO SOMETHING. Plus it will give me some money that I desperately need to be able to continue to pay off some bills that we will still have coming in. And to save up for some future things.

This summer I would really like to do something for ME. I would love to travel a little bit. I have gotten an offer to go to Philly to see my brother-in-law and hang out there for awhile. Rumor is maybe a few of us CF wives might be able to get together some where for a few days. And I would really like to go to San Diego to see my best friend, Emily! There is also a camp called "Camp Widow" in San Diego is August that I would like to go to - but it's quite pricey and I don't know if it would conflict with fall classes. I know I can't travel everywhere that I want to - but I am thinking that I can save up to go to two places - we'll have to see. Long story short (haha) I want to go somewhere else!!!

I also need to go to back to Utah for a short visit. I need to tie up a couple of loose ends and I would really like to see some of my friends - I really miss my Utah friends and support group! That trip shouldn't cost too much, though.

After the summer - If I feel like I'm ready, I plan to move back to Utah to finish my degree. I so badly want to finish my major and get into my career! So that's my number one goal once I get back into the swing of things. I have fallen in love with Utah and I have made so many amazing friends and a great support network there - I can't imagine not going back. I also spent what seemed like forever trying to get my residency for tuition purposes; I'm not giving that up! haha

So those are my... I guess you could say tentative goals. They change a lot and probably will up until I make the decision that it's time to move back.

Wednesday, January 11, 2012

Un-Health Plague and One Month

Oooh boy - seems like no matter where I go I just can't get away from the sickness that plagues my family. I've been dealing with illness ever since I was 11 years old and it doesn't look like it's going to be stopping any time soon. I just feel like I've had my fair share of it all.
For a quick recap on my life and the illness I've dealt with.......
My Past with health issues:
* My diagnosis of Crohn's disease about 11 years ago when I was 11 years old and struggles with it... past and current
* My dads triple bypass surgery just a few short years later and his heart troubles that have been with him on and off ever since
* My grandparents struggle for health while I was in HS - constantly in the hospital, heart attacks, problems with diabetes, questions whether they were going to make it
* Loss of my uncle to cancer
Health issues within the last year:
* My sisters struggles with anxiety and depression - though it may not be physical but it's still just as hard for her and us to try and understand and help with
* My aunts battle with breast cancer
* My father-in-laws fight and loss with/to cancer
* My mother-in-laws diagnosis and fight with breast cancer
* My husbands battle for his life and loss of his life with/to Cystic Fibrosis - for 5 years I was a part of that
* My grandpa S. current declining health and move to a nursing home
* My grandma J. current move to the nursing home and rapidly declining health
* My Grandpa J. reoccurrence with brain cancer which in turn has effected a lot

With all of this combined... my parents (especially my dad) are beyond stressed out. The issue that's constantly talked about in our house? Health. Death. Hospice. Hospitals. Nursing Homes. Doctors visits. Medications and you-name-it.

When it's talked about it feels so normal. That's been my whole entire life as I remember it. But after hearing the same thing said 2-3 times in a matter of an hour due to phone calls to notify the rest of the family.... It starts to wear on me... and just overall exhaust me. I can't say that it really upsets me (It does... but not any more than normal) but it wears on my emotions and mental status just thinking about it.

I'm. Just. Sick. Of. It. I want to get away from anything health related right now. I just watched my husband decline so quickly, fight for his life, struggle to breathe, make the decision to switch to comfort care, making the decision to discontinue life support - I'm NOT READY to go through all of that again with my grandparents. With ANYONE for that matter. I just want a break - a very long, extended break. I'm shocked I'm not the one who is sick right now. I'm thanking the Crohn's Gods for keeping me healthy during all of this. Fingers crossed it continues.

Thinking about making end of life decisions for my grandparents somewhat brings back the memories of Spencer and what I had to go through with him exactly 1 month ago. It's so fresh. I know so much more than a 21 year old should. I know the ins and outs of hospice and palliative care. I know the decisions that have to be made. The plans that are to come and follow. The funeral "routine" before, during, and after. It all just sucks. I can only hope that things can be done for my grandparents so that they can live to see at least a few more months. I'm not ready to fully revisit the process again... even though it won't be myself making those decisions - I'm family... the granddaughter and I will be in that process. I will hear about it no matter what. My heart just breaks. I. Hate. Death. and it scares me.

For right now, yes, I want to be completely away from anything medical... but my heartstrings are pulled in two very different directions. My grandma has not been doing well this last month. She's been in the nursing home, been in the hospital, there's been a few times we thought she wasn't going to make it... The care she is getting is horrible and inexcusable...... but yet I have not seen her since I've been home. She could be living her last few days without us fully knowing, yet I have not been able to take the time, to muster up that courage to go and see my grandma. Sure I think that I will be okay going to see her - but I am so scared it's going to bring up emotions I've long forgotten about. I'm afraid I'm going to be so vulnerable.
I'm also SO used to care taking... so used to being in a position to help. I know that now is not the time - but hearing how my grandma is getting treated and not fulling being helped is really upsetting to me. I went through ALL of this with Spencer when we switched floors in the hospital. Him not getting the proper care I thought he deserved. etc. It just feels like my nature to go up there and help in some way - any way. I feel like it's my roll... but its NOT anymore. My cousin has been taking very good care of my grandma. She also works in health care and knows her stuff. But for some reason, I guess since I've already been through it personally, I feel like I should help. If not help - at least visit. I don't want to regret not spending time with her while I have it.
I just don't know. I am torn. Very conflicted. I don't think anyone can fully understand my situation unless they have actually been in my shoes =/

Oh dear - I just don't know what to think. I have so many mixed feelings and so many thoughts that go through my mind - sometimes it just takes forever to sort through them all.

Today marks one month since Spencer passed away. It's starting to set in more and more each day. I finally called social security on Monday to report Spencer's death. That was a very, very hard phone call to make. It really threw my day for a loop. I was just a ball of emotions. There is something about officially reporting it that makes it SO MUCH more REAL to you. After that phone call I have put off several others that I really need to make. I know I'm going to have to deal with them all.... but I just don't want to. That was a hard call - but now I have to deal with the bank and figure out how I can control his account since I didn't have POA (something we needed to do but were never able to... ugh) and I don't know if he signed anything that turns his accnt over to me. I just dunno how that will go. Also need to call my cell phone company to see how long our contract is for... that won't be a hard phone call - but I don't know any info about our account. Spencer always handled that... so I guess in turn it makes it hard. I also need to call the welfare office to talk about Spencer's SSI payments and get them stopped and returned.... That's a very important call - but I just don't want to make it =/ I'm just going to take this one day at a time I guess. as long as I get it done by the end of this month I'm going to tell myself it's OKAY.

I just can't quite believe it's been a month. In some, and most, aspects it's went by very, very slowly. I'm on "Widow Time" as I've recently been heard it called. Times just seems to stop and it feels like 3 days have passed when only one has. But then in a few aspects it feels like it's went really quickly. It feels like yesterday that I was holding Spencer's hand for the last time, you know?

Also, a couple of days ago I started to go through a ton of bills and EOBs and papers that were on Spencer's old desk... Oh boy. It was a very slow process going through everything. Hard to toss anything, but I managed by reasoning with myself. But I ran across the package of death certificates, right after I looked at his birth certificate. I had never looked over his death certificate before. I didn't know what was on it. My stomach kinda sank when I got to the end: Cause Of Death. Boo. Of course it was what I already knew - Cystic Fibrosis, hospital acquired pneumonia, liver disease, and kidney disease. Yup - his body just basically shut down. Sucks. Just another reality of CF.... we need a cure so desperately.

Speaking of the EBOs.... (Explanation of benefits if you were wondering...) I got the damage of Spencer's 3 month ICU hospitalization. And this was just from ONE EBO... it wasn't a combination of several others I have received. But did you know that it totaled up to OVER 760,000 dollars?! Combined with other procedures, other meds, bills, and other hospitalizations that year - I have no doubt Spencer was easily a million dollar patient, just last year. Jeez. I can't even IMAGINE what his life-time total is. O_O Praying I get stuck with nothing. There is some things I do have to pay off that I knew I'd be stuck with.... but I am SO grateful for good insurance. He had AMAZING insurance that covered pretty much everything. <3

A phrase that kind of gets me, especially after reading so many different widow's stories, is when people tell you it will get better with time. I don't think it gets better - I think it gets DIFFERENT. It certainly hasn't gotten better 1 month out - I'm just starting to realize that he's gone. Then comes all of the next things I realize including, but not limited to, living on my own, controlling all my bills, not having one to come home to at night, moving again, making new friends, not having a very best friend, holidays, birthdays, significant dates, dating, marriage again, children, family..... etc etc etc. Throughout my whole entire life I am going to be missing a piece of me. A very important piece. Just a thought on that topic - I'll let you know if it changes.

Anyway.. I think I've prolonged this post quite enough. More to talk about but I'm sure you're sick of reading by now. Need to space this stuff out - gives me a reason to write every day. Perhaps I can start a list of things I want to talk about so I have that reason to express myself every single day... We'll see how it goes.

Until next time....-

Saturday, January 7, 2012

Raw Emotion

I told myself that I wanted to be as open and expressive as possible through the process of grieving... and so here it is... raw emotion. I don't want anyone to be concerned about me... but I need to be free to express my feelings and emotions as I feel them. Some of my posts to follow will probably be more depressing than you're used to reading... but I hurt. I miss him. Positive posts will come too, I promise - I can't possibly feel depressed every second of every day... it's not how I am. But prepare yourself for the emotional and as I said before, raw, posts. I'll warn you with a simple message before I post them incase you're not wanting to read them... But here is the first post I've written about how I truly feel... Prewritten on a grief site, copy and pasted to my blog.....

I haven't been feeling like myself these last few days. The feeling is just too strong to push through and overlook - though I am really trying. I don't want to just sit around, lay around, sleep all day.... I don't want to feel like i'm being a bum. I've tried to get out with my sister and do some chores that needed to be done. I've tried reading, blogging on my blog, surfing the web, exercising, cooking... But nothing is is really sparking my interest and passion like it did before Spencer passed away. When I was stressed when I was with Spencer - I would cook. It gave me something to do, something to put my efforts into. I could be proud of something that actually went right, or just laugh at an attempt gone terribly wrong. It helped me to take a deep breath and just enjoy something rather than worry. But I have baked and cooked a few things these last few days - the passion and interest just isn't quite there. I hate that =/ I want something that is going to take my mind off of these feelings - even if it's just for a few minutes.

The feelings and emotions are just plaguing me and I can't shake them. And they are hitting suddenly. I don't know if anything triggered them; my guess is it's just grief. Crappy old grief. Not having the energy to do anything. Not having the passion behind anything that I used to. Not having the interest in things that I once did. I'm nearing a month without him.... ONLY a month. I feel like it's been a lifetime. I can't even imagine what 2 months, 3, 4, or 5 is going to feel like.

I feel lonely. So lonely. I feel like something is missing. A piece of me IS missing and there isn't a thing I can do about it. I feel trapped in a mix of emotions and a place where I just don't want to be.

I moved back home to be with my family. I'm glad I did - I have the support that I need, though I haven't quite used it yet. I just haven't been wanting to talk about it - at all. I don't know what to say about my feelings because half the time I don't KNOW what I am feeling. And I just feel trapped here. I am from a town of only 400 people... There is NOTHING around here and NOTHING to do. All of my friends are in college, of course, and no one is around. I'm completely by myself. I think that's driving me more crazy than anything. If I was back in SLC I could go and do the things I want to do. I have my friends there that I've met going to college. I DO have a support system there - but nothing like what I need. My family is going to be the best support that I can get and so it's important that I'm home. But what do I do? All i've done since I've come home is be on my computer, read, sit around... It's getting old... fast. There are no groups to join.. There just isn't anything here for me.

I hear about my friends in college (my HS classmates) doing all sorts of things and being excited about certain things... I miss that. I miss the excitement for events at college... Planning dates with my husband (whether they happened or not)... Going to my friends house for game night.. heck I even miss the commutes back and forth to the hospital. The 2 week stays in the hospital with my husband. I just miss my life. I don't want this to hold me back! But I really, REALLY need to take the time to feel how I'm feeling. I don't want to hold it in and then have it come raging back at me 3 or 4 months later because I haven't dealt with how I'm feeling. I just miss him. Period. Every single little thing about him. He's something I can NEVER get back and it hurts like hell. I feel so empty. At first it felt like my Christmas break. Coming back to KS with my family with Spencer being in the hospital. Thinking that in 2 weeks I'd be back to see him. But now I'm almost at the 4 week mark and I am realizing I can't go back. I can't enter that hospital ever again and see my love.

I got used to not being able to talk to him on the phone - as he was trached for 3 months. We would text sometimes and that was SO nice. And now I can't even pick up the phone and call or text him... He won't reply. He's not there! I think something I miss the MOST is his voice. Spencer has been gone for only 4 weeks... but his voice has been gone for over 4 months. I haven't heard him for 4 months and it hurts so much. His calming, reassuring voice that everything will be okay.. if not now - in the future. But I will NEVER hear that again from him. It's not the same coming from anyone else. The way he said it.. the words he would use to tell me that it's okay. His touch and embrace that he could give me to calm me down... I'll never - ever experience that in the way that Spencer gave it to me.. ever again.

The pain of loss, for the very first time, is gripping me tightly and not letting go... Tonight is the worse night I've had since he passed. The pain of losing your everything, your heart, soul, and being just isn't describable. It hurts to bad. It's an inward cry and pain turning outward... a searing, hot, blinding slash through your heart when you realize he's really, truly gone. That the world as you knew it ended when he died. The plans for your future were cut short. MUCH too short at the painfully young age of 23.

21 is much too young to take on the label as a widow, yet I guess I can't see it being any other way. I knew he would die when I met him. I knew he would die when I married him. I just NEVER imagined it would be 6 months later. I never imagined that we would NEVER get to experience wedded bliss; as 1 week after we married his dad died, then his mom diagnosed with cancer, and then him requiring a couple of 2 week long hospitalizations... and then the rush to hospital and 3 month long ICU stay that changed my life forever....

I have a very long life ahead of me... and I don't know where to turn next. I don't want my life to stop just because Spencer's did. He told me he wanted me to be happy with whatever I did. He told me what he wanted for me. And I KNOW I can be happy again. But I don't want to have to go through THIS to be happy. It's not fair. I hate being told that I will be a stronger and better person because of it. I am ALREADY stronger than most people who are 60 or 70 years old because of what I've been through in my short life... My own disease, Spencer's disease, caretaker, wife, widower. I've seen it all... been through it all. What else can possibly come out of going through one of life's worse experiences? What more do I have to gain through this? haven't I been given enough? WHERE DOES IT END?!

I terrified of what is to come. I know I need to take it day by day. But day by day is the SAME THING. I know my emotions are going to get worse. I hate the person I have become since he's died. AND IT WAS ONLY 4 WEEKS AGO! At first I had a passion for life that I just couldn't describe. But now... every thing has faded. I can barely look at the next hour of the mundane task I have every single day... to think about him.. what I miss.. what I no longer have... to grief and try and accept the live I've now been given.

I just don't know what more to say... I hurt. I feel so lonely... so isolated. I'm feeling sad, hurt, angry, tired... all at the same time. I can't sort through my feelings. They are all just there... haunting me. I just want to sleep - but sleep has been hard to come by. Can't sleep until 3:30 in the morning and don't wake until 11:30 or 12 in the afternoon. Not how I want it to be at all... understandable - maybe? But I don't like this pattern

I just don't like the turn I've been given.......

Thursday, January 5, 2012

Quick Thought - Song

I've been having somewhat of a harder time now that the time passed after Spencer's death has grown. I've been told a lot of things... where I'm at in the process - Other widows tell me I'm still in the 'fog stage', some say I'm still in shock. I don't know where I'm at but it doesn't matter what "stage" I'm in - it all still hurts and sucks.

I KNOW that I am still in 'shock'. The full reality hasn't hit me, and I'm sure it's going to come at different times. I'm going to feel the force of reality many times through the next year and beyond at different times. But I also know some of the shock is wearing off and I'm missing him and feeling many more emotions than what I have.

It's only been 3.5 weeks and it really doesn't feel like it. Time tends to stand still these days - though, for some reason, I do have to say that this week has went by a bit faster than the others.

At any rate - I just wanted to share this song/video that was posted on my facebook wall. I love it so much!

Tuesday, January 3, 2012

New Year's Widow Resolutions

This is taken from a blog called, Widows Wear Stilettos... I just loved what was written and wanted to share for my own reflection, and even to help others. I am only 3 weeks into this.... but I know I will be coming back to this for the times to come.



1. Acknowledge that I am still here. Although I have been through a devastating, life-altering event, it is because I am still here that makes me entitled to a life filled with abundance and happiness; regardless of how much or how little time has passed since becoming widowed. I do not have to wait any specific amount of time to begin my Healing Journey and accordingly, I will not feel guilty; nor will I doubt or question my pursuit of a life filled with happiness and peace.

2. Realize that my Healing Journey is mine. It belongs to no one else; not even to other widowed people. It cannot be compared to anyone else or to other experiences. It is neither fast, nor is it easy. I cannot "hurry" my grief; even though there may be people around me who want me to and wish I would. I will therefore truthfully honor however and whatever it is that I am feeling; rather than let any opinions around me dictate how I "should" be feeling or what I "should" be doing.

3. Be kinder to myself in all respects. This includes eating when my body asks me for food (and no, Cheetos© and Diet Coke © do not count as "food"), sleeping when my body needs rest and rejuvenating myself through whateverhealthy pursuits will fill my soul. My self-talk will be impeccable and uplifting… and on the days that I don't believe in myself or my ability to heal, I will turn to those who can "breathe belief" into me; rather than turn to those who will bring me down and keep me there.

4. Realize that my identity and my self-esteem have nothing to do with my marital status, what I look like, what the number on the scale reads, my career path or any material accumulation. Rather, my identity and self-esteem come from within and I recognize that what others think of me is not half as important as what I think of me. To that end, I recognize that not everyone will agree with what I do or how I go about doing it; however, as long as I am not hurting myself or anyone else and all of my legal and moral obligations are fulfilled, I will pursue the life that I wish in the way(s) that I see fit

5. Part 1: Limit any time with Energy Drainers and allow those that contribute to my life in a positive way to help me on my Healing Journey. As my comfort zone continues to expand, I will accept invitations to lunch or dinner, a movie or offers of help in the household; understanding that letting others help is also part of the healing process for those who care about me.

Part II: Be the one who initiates invitations for lunch, dinner, a movie or other quietly social activities with those who contribute to my life in a positive way; rather than always wait for others to do the asking.

6. Accept that I cannot control the fact that I am widowed or the new life that I have been handed – but I can absolutely decide and control what I am going to actually do with the new life that I have been handed. I will therefore make a list of what I would like to do and / or accomplish this year. It may be a new hobby, a pursuit or activity that I had to give up and want to resume, trying new foods, meeting new people or exploring new places. Whatever I decide to do or try, I will do so with the understanding that by exploring new opportunities and experiences, I am not forever turning my back on my past…rather, I am taking control of a situation over which I have had little or no control by slowly embracing a future of my choosing.

7. Continue to be proactive on my Healing Journey, rather than simply waiting to feel better. I will accomplish this by utilizing whatever tools I need that will help me along my Healing Journey; as well as by surrounding myself with the support of others; be it online or in-person, who each understand exactly what I have been through.

8. Acknowledge that it is not a sign of strength to try and heal alone; nor it is a sign of weakness to seek help. This includes consulting with my doctor, a therapist, a coach, a cleric or any other expert that can help me move forward on my Healing Journey in positive and productive ways.

9. Understand that when I actually pay attention to and effect these resolutions, I will become a more productive and stronger parent, employee / employer, child, sibling…and WOMAN.

10. Above all else, I acknowledge the certain truth that while widowhood has definitely shaped me, it does not now, nor will it ever define me. I refuse to be defined by tragedy; rather, I will choose to define who I am and the legacies that I carry forward.

Sunday, January 1, 2012

2012 To-Read List

I love to read. Epecailly when I have a lot on my mind. Sometimes it's really hard for me to get started reading, but once I get a couple pages in I'm hooked. It really gets me away from my own reality and I get to go into a different world.
Well this year I would really like to spend more time reading and less time on the computer. I love connecting with my friends online - but since I'm starting to grieve there are many things that have been bothering me about being online. I need to actually DO something with my time - so therefore, in most of the time I would spend on the computer, I'm going to spend reading a book! =)

I hope I can add to this list later on as I go through the books. I have a ton that I want to read - but here are a few!!

1) I want to get several books to help me grieve. I don't expect, necessarily, to read them page by page - but rather to flip through and find chapters or pages that express what I need to hear. I have several different books on grief (10 to be exact) That I'd really like to get my hands on. Excessive? Maybe.... but I feel different parts of each book would help me in a different way.
2) Book of Mormon
3) I want to re-read Heaven Is For Real
4) The Other Side Of Heaven
5) The Hunger Games Series
6) A Stolen Life (memoir of Jaycee Dugard)
7) The Boy Who Came Back From Heaven
8) The Shack
9) Re-read the series of Unfortunate Events

Hopefully I can AT LEAST get through these this year! =) Possibly will be adding more!