Wishing to go home....

These past two weeks have been probably 2 of the hardest weeks in awhile. Not physically, but just mentally and emotionally.

As some of you may know, this all started out, basically, when Spencer was discharged from the hospital the last time (June 1st). Last hospital stay he coughed up a little bit of blood, that stopped, but then he got a "cold" of some sort. They let him out, (shouldn't have, we come to find out) and he went home feeling pretty crummy. The bleeding came back little by little. Things were going 'okay' until the news of Spencer's dad hit him hard. He found out his dad has a serious and aggressive stage 4 cancer. This got Spence pretty down (which I don't blame him one bit) and just made things spiral downwards little by little. We were finally told that because the bleeding wouldn't stop that he needed to go to the ER to be seen... so we did.. and here we are again in the hospital.

This is the part that frustrates the heck out of me. We're back in the hospital - basically because his doctors didn't pay enough attention when they went to discharge him last time. They should have looked further into it. We found out that, most likely, the reason he was bleeding from his lungs was being he got a lung infection which caused some inflammation. When I get to thinking about this, the lung infection probably started the last 4 days he was in the hospital last stay... if they would have kept him just a little longer the last time - we wouldn't be here right now.. So i'm basically saying; I believe this could have been prevented =/

So when he first got admitted in here this time, they told him it was just for observation. They didn't see him staying in for 2 weeks because he looked good, his lungs actually sounded very good, and they thought things would turn around quickly and he could be out of here. Then we got word from the doctor a couple days after the admit that this was probably due to a lung infection and that they were going to start him on antibiotics to kill the infection and reduce inflammation. She was staying that this stay needed to be at least 10 days long so that they could get the infection and so that he wouldn't build up a resistance to the antibiotics. Frustrating, but understandable, right?

So we go for a few days.. thinking that he would be able to go see his father soon, and get back to school this coming Monday - things were looking good!! His oxygen needs went from 6 liters to 3 liters and they were saying his lungs sounds excellent. They said that he would do PFTs to see where they are and then they would consider letting him go home! YAY good PFTs and we're home right?!!! WRONG! They didn't even schedule the PFTs. =/ He was supposed to have them Tuesday, but he doesn't have them until Tomorrow!!! (Friday) Okay.. so Friday we do PFTs, they should be really good (considering how everything else is going) and we will go home!!! Just in time for father's day with his Dad, School for the week, and a nice family reunion next Thursday...

.....Maybe.... now they are telling us he needs to stay in for a full 2 weeks!!!!!! Now let me tell you - I am frustrated beyond all belief. Come onnn.

Please tell me why you would tell us that we need to be in here for 2 weeks when you previously said the following:

1) this is just an observation stay to make sure the bleeding doesn't get worse
2) we need to start you on antibiotics but we will try to get you out of here in 10 days

3) you sound excellent

4) he met his oxygen goal (to get down to 3 liters) ((and he's been satting very well))

5) he JUST got out of the hospital

6) he feels better than he has in a long time (aside from depression from all of this crap)

The PA is on our side... He doesn't feel like there is a need to stay in for a full two weeks... but the doctor isn't budging... I am so SICK of being pulled in two different directions. the PA has talked to the doctor time after time... and Spencer was supposed to see her several times, and we were told that she was going to come in today... never did... then the PA called Spencer and said that she was going to call here shortly so we should stay by the phone.... nope, that was 2 hours ago... never did.

WHY CAN'T WE GET AN ANSWER?!?!

I mean.. I understand that if there is a very legit and good reason why she is keeping him here - that it be important to stay 2 weeks... but she won't even talk to us.. We haven't been given a solid reason. Right now, as it is, it seems like we're just here.... to be here...

He has made the comment... and the point clear... that it is VERY important to Spencer to be out for father's day.. this could very well be the last fathers day he gets to spend with his dad. Not to mention that he wants to spend AS MUCH TIME with his dad as he can... He needs to..

Not only father's day.. but he JUST started school. We were just getting life on track. it's so so important that he can be in school as much as possible..

And then last, but certainly not least, There is a big big family reunion this weekend that we have been looking forward to... they don't come very often and he REALLY would like to see his family (who he never ever gets to see)...

-sigh- I just want an answer. I want the doctor to stop ignoring us... I want him home. He is getting so frustrated and it's really brining down his spirits.. His mood is slipping, depression seems to be increasing.... can they not see this? =/

I almost feel like there is something here that we are not being told..... regardless - I WANT TO KNOW!

I know this might seem like a minor problem to some of you.. specially those who don't know the full story... We're tired of the hospital... he was admitted 16 times last year.. we want to start LIFE..... and this is not at all helping..

Please pray that we can at least get answers... if not go home - at least understand WHY I can't take him home...

I've desperately been needing to vent... It helps.. but just not enough.. I need all the support I can get!!!!!

-Nikki

breaking points

You know those moments where you just feel like you can't hold it together anymore? When you feel so overwhelmed at life... You just don't know what to do next, heck even where to start. You just can't understand exactly why all of a sudden you are feeling this way and why you can't just ignore it.. -sigh-

I'm at that point... a breaking point and I don't like it at all. I guess I should have known it was coming - but it seems like it just hit so suddenly I don't know what to do with myself.

I'm angry. I'm sad. I'm frustrated. I'm lonely at times.

There are just so many things running through my mind... I can't get it to stop. I just don't know how. I feel like I don't have the strength anymore - and thats scary to me. I've always been this super Nikki type of person who did it all. Without complaining. Putting everyone first. Not careing about me, but loveing and careing about everyone around me. I have been the most selfless person..

But now... I want to be selfish.

I want to be the one who everyone loves and cares about. Who would drop anything to help me out when I'm needing it most....

I don't know what to think... I just want this to all pass over and go on with the way things are supposed to be... I just needed to vent..

I feel lost... =/

Poem by a Fibro (2)

Breathe Easy

Every single breath we take,

A gift from God, which we partake.

We live our lives without a care,

Not even thinking, we suck in air.

The air goes in, our lungs it fills

Into our red blood cells the oxygen spills.

It flows out, each part it graces

From our toes, up to our faces.

The other cells take in that gas.

From cell to cell, none will pass.

It helps them grow, it helps them fight,

It gives them power, it gives them might.

But what perchance, should the lungs fail?

Is that a cause to sprawl and wail?

There is a preciousness with each breath

For without, it’s certain death.

There are some born with a disease

Their genes are missing certain keys.

They lose their lungs but not their heart

Striving to live from the start

They seem to grow beyond their years

With their lives so full of fears

They grow and learn, among us all

The hacking cough as their call

They learn to live, tho they’ll die

To live their best they do try

Weeks in hospitals, days spent sick

Most of them as skinny as a stick.

Doing treatments, having fun

Sitting outside, time in the sun

Taking handfuls of pills every day

So to live, their bodies may

Years go on, health declines

After doing things of all kinds

Constant infections do their deed

At times, the lungs, crack and bleed.

In the lungs, scar tissue fills

Mucus clogs, together, it kills

And so the body loses life,

The spirit leaves, its earthly strife

It enters through the heavenly gate

To receive its well earned estate.

There they wait for all of us.

We needn’t make a fuss.

For we will see them once more

Sitting with God upon the floor.

A Fibros Poem

So at 1:00 AM, Spencer decided to whip out his computer and write a poem. Now if you've ever read one of his poems, you could have many different emotions such as: laugher, sadness, pain, empathy... etc.

I get excited when he writes. He has such a way with words. He can really put his emotions into words in a special way. He's written me a couple poems and I love them. Usually he writes about his CF and his long battle with it. The poetry is amazing. I believe that one time his poem was featured on a website. :)

I want to share with you a poem a week.. for your laughter, inspiration, and empathy. A lot of these are expressing his true feelings and I hope that you will be touched in some way by them :)

All of my CF friends and caregivers know what it's like to do treatments every day... this one is kind of funny about missing a treatment... He wrote this several years ago. ENJOY!! :) Leave your comments if you'd like!!!

Treatment or Two

Oh crap! What do I do?

I forgot to do a treatment or two.

I'm going to the doctors later today;

I wonder what they're gonna say.

I could always tell them that I'm dying,

But then they'd think my brain is frying.

OH CRAP!!! What do I do!?

I forgot to do a treatment or two.

I didn't wake up until 6:30,

I didn't shower, I'm still dirty!!

There wasn't enough time to do my vest,

The doctors just won't be happy without my best.

Oh crap........what do I do?

I forgot to do a treatment or two.

From now on no more sleeping late!

That just might change my fate.

Their gonna make such a fuss,

And bite their tongues as not to cuss.

Oh crap what do I do.........?

I forgot to do a treatment or two.....

Well, it’s more like fifteen or eight,

But who's counting, it's too late.....

Death and Time.. and CF

There is no fancy way to say it... no sugar coated way to put it... but I wish there was... I wish there was an easier way to think of it... to know everything happens for a reason.. But there isn't.

Death scares me. It scares me now more than ever. I have been forced to see death in a whole different light - and it's upsetting, aggravating, frustrating, and devastating to think about all at the same time..

I never thought that I would have to put death into my reality so early in my life. But lately - it's been the only thing I can think about. Everything is a matter of time to me now. Everything is in years... It shouldn't be... I know it will get better - I'm just trying to grasp... death... dieing... passing away...

Death and cystic fibrosis never clicked with me until a month ago. I didn't realize the reality of it all. I thought... psssh he will be the exception. He will be the one guy that lives in to the 70s or 80s with CF.. We can fix it all and it will all be normal... ok... fine...

But it's not true... at all. It's all very real. He is going to die eventually and I hate it. I'm scared and frustrated and tired of thinking about it. I never know when that day will come... It shouldn't come in a long time... but how do we know?

Why do the most deserving people have the most devastating problems.. It's not fair. I hate it.. I'm pissed off. I want my love, my best friend, to live a long life. To be able to do the things he once did. It all just seems to be going in a downward spiral. Things get worse... We take a couple steps forward and then more than a couple steps back. Make no progress. Can progress happen? will it happen? Who's to say?

I just need to accept death. But how? How do I deal with the thought that my future husband is going to leave me and his family and friends behind well before any of us are ready. How can I live with knowing that I have a limited amount of time with this wonderful man? How do I stop counting years.. and just live every day to the fullest?

I mean... I do my best to cherish every single day.. Trust me - I do.. and usually I do a pretty good job at all. I can make the best out of the day.. But if I stop and give myself time to think about it (usually in the evenings.. or when he's sick) I start thinking about time... time time time.... I want to stop putting everything into years!!!! We don't know that we have 3 years or 30 years together.. and we can't know that..

-sigh- No one should have to go through this... Especially so young... not the CFer and not the care team. It's hard. Unfair. And I absolutely hate it.

Time. Time. Time.

Hectic life!

Wow things have been so crazy lately. Seems like I never catch a break. I want to get better about writing blogs - but it seems like every time i think about it I always think of something I should be getting done.

Recent News:
Spoke at the annual Starlight Children's Foundation Gala/fund raiser in LA
Traveled to LA, to Sand Diego, to Kansas, then back to SLC for Spring break
Got ENGAGED! <3
Finished two huge papers and got A's on them both =)

Will write more later - for now, I have to get to class!
Toodles~

Emotionally rough day =/

You know those days where you just want to put life on hold, just make it stop? Thats kind of where I'm at right now.

I realize that things do get better - and it's just a short bump, but at the time it feels like things don't get better, ya know? I think a lot of it comes along with being in college - everyone in college experiences days like I am having right now.

You know, you feel completely overwhelmed, you have a 10-15 page paper do, huge test coming up, all at the same time having midterms to prepare for... and it all hits at once - no matter if you start early or not. All this is going on right now for me and i'm most definitely stressed.

See this paper I'm writing is making me to a lot of thinking. I'm supposed to be analyzing my gender role journey throughout my life. It's hard - lol. You think talking about yourself would be rather easy, but not so much for me. When your identity is being built this happens around junior high and beginning of high school. It's when you join into groups, make a lot of friends, have cliques, figure out where you belong, who you are. I realize that I am still doing some of that now - probably more than anyone else. During those crucial years - I missed out. I missed out because... I was sick. I missed most all of those years. I was at home sick. 4 hours away from home, in the hospital sick. I didn't get to construct who I was back then. I didn't get that chance. All I thought about was why me, when will I get better, is this blood test going to show I'm not getting better? I didn't have time to think about who I was, what my gender role was. I didn't get to explore myself. My parents didn't have to set certain rules, monitor the friends I hung out with... There were no rules to set, no boundaries to follow, or break. I didn't have friends... My parents didn't have to worry.

This is a chapter in my life in which I thought I closed the book and had closure with. I thought that it was just something that I wouldn't have to really analyze... I can talk about it with people, share things that happened... but when it comes back to remembering everything I missed and didn't have... Every opportunity I didn't get... It really hurts.

I didn't realize this paper was going to effect me so much emotionally. I am really struggling with it. Even though this all started 9 years ago - I am not at all ready to re-live everything I went though. It was a VERY rough time for me and I am struggling at looking back... It's a very raw subject.

I know this paper will make me stronger in the end.. I will be forced to think about things that hurt.. and sometimes that is what you need. My life in general has made me a stronger person, and this is just another chapter and point that will help me along the way.