Wednesday, December 7, 2011

For once I loved

I do, I do,
is your heart true;
now that you have left me as the fool?

Who am I, who are you?
A heart of anger and you treating me like a stranger;

Convinced it was only me; how can you not see,
that we were suppose to be?

Which is really right, which is really wrong?
I know how to be strong because I have been doing it for so long.

You will not have the best of me yet,
Oh and I will no longer fret;

Over a boy that could not stay wed,
for I know you will have to sleep in that bed.

Wednesday, November 16, 2011

Sharing is BAD!

Colds, everyone gets them, most people get better in 3 days some 7 days. Like everyone else you feel like crap, get a headache, growl when you spit up mucus that is in abundance. Granted you are sick and you feel horrible, and it cuts into your plans like a serrated knife, but really, really it is not, I repeat it is NOT the end of the world.

You may shutter when someone coughs next to you in line, and think, "oh no, a cold is the last thing I need!" No one ever wants a cold, no one needs a cold but it is inevitable that you will get at least 8o colds in a lifetime. Just deal with it, get better the light at the end of a very short tunnel is in sight. Hand sanitizer, a good thing right? Wrong. People with healthy normal immune systems do NOT need to steer clear away from colds, in fact your hand sanitizer is not even killing that virus you think you are protecting your self from, you are just creating more super bugs. So please with all respect STOP! Don't be lazy and wash your hands with good old soap and water.:)

Sidenote: Not everyone who coughs is sick! *ahem* CFers!!!!!!!

CFers try their very hardest to stay away from colds because each cold will shorten your life. When you have a cold you usually just get left with a stronger immune system, we get left with lung infections, sometimes fatal bacteria and scar tissue that will eventually take our life. We usually have to go on IV antibiotics 2 weeks as least. Antibiotics, that isn't that bad, at least its not chemo, right? As I have never had chemo I can't tell you how it feels, but we have almost all the same side effects as someone that is receiving chemo. Basically you are killing EVERYTHING good and bad in your body and well, your body doesn't like that to much.

So a healthy way to prevent colds, WASH YOUR HANDS, AGAIN, AND AGAIN AND AGAIN!!! Don't share your germs, please keep them to yourself, thank you but no thank you. Stay inside for 3 days! "OMG, 3 whole days, Rebecca you don't know my life way to busy for that, like work, pick the kids up from school." blah, blah, blah. I get that you might not be able to stay inside, but you CAN limit your time out. You can stay at home from work, your co-workers will thank you, I promise it will be there when you come back. Make one trip to the grocery store, for like, chicken soup, cough meds etc, then try to be a hermit. Please.

Sometimes you are not just preventing someone from getting a cold you could actually be saving a life.

Finally I am going to drop a product that has worked miracles for me and my colds, I am not paid to say this or promote this product but really take it at the first signs and you most likely will be able to kick it in one day!

Sunday, November 6, 2011

Power Boost Smoothie

This has become my morning routine. I make a small smoothie, it helps me get all the little things I need to take daily fast and easy.

Plain or Vanilla yogurt - 2 heaping tablespoons.

Yakult bottle- 1 bottle (a little pro-biotic drink)

Barley Grass- 1 heaping tbls

liquid multi-V -1 tsp

Frozen fruit- about a quarter cup of a Banana or your choice of frozen fruit

fruit juice- quarter cup-your choice of fruit juice (I have been using Green Source juice)

Blend and feel your metabolism jump start in the morning.

About 3o-45-min later I make a egg scramble using only eggs/veggies and sun dried tomato pesto, So yummy!

Monday, October 31, 2011

New way, new me, new journy

The more and more I learn about CF and its stages the more I realize how much we really don't know very much about it. Even more so treating adults with CF is a very new thing, adults with CF are pioneers right now and each one of us is having to fight for future generations to come with Cystic Fibrosis.

Also with my experience I have learned that I have almost always been right when it comes to my own body and taking charge of my care rather then never questioning or voicing what I feel to doctors or others in charge.

I am now going to embark on a different angle with treating my CF, I will now be trying a holistic approach to fighting CF. A journey that most western doctors would frown upon, but from experience I am finding that alternative treatments have value.

Right now I am going to be 28yrs old in less then a month, I have a lung capacity of 67% to 73% or 2.0-2.2 liters. I weigh 108lbs and am fairly healthy because of how hard I work to take care of myself, but I know I could do better.

When I move back up north I am going to start training for a sprint-Triathlon and cutting back on my dairy and sugar intake to see if that helps reduce my mucus production and allows my immune system to not be compromised.

If you have any tips on this new lifestyle then I would greatly appreciate it. There are a few holistic things that I find really help me out with some CF related issues if you want to hit me up. Mucho amore.

Monday, May 23, 2011

My near death experience

So I went into the hospital on Tuesday. Everything was ready to go but the hospital literally didn't have enough rooms. People were sleeping in the halls and we were one of them. I tried my best making it my own little nook, so that Kyle and I could get some rest. Then we heard word of a bed....

So we did the whole process, wiped down the room, got extra blankets and pillows, etc and it only took about 1 hour to get the antibiotics started; Vanco and Septra.

I have taken both of them before and the only side effect I had with Vanco was itchy, easily treated with Beny.

Well he set the course, hit start and I went straight to sleep from exhaustion from a long night in the ER. I slept pretty hard not to normal for me either. 2 and 1/2 hours later I woke up with this itchy, burning scalp! I have had similar symptoms to this with other antibiotics so I wasn't to concerned. Then within the next 10 min, everything came rushing down.

My hands were swelling fast, my fingers turned purple so they cut my rings off and hives all over my body. Then my throat began to swell. At this point I was freaking out but the people said your fine, just take a deep breath. Well I couldn't take a deep breath my throat was closing and making a very loud wheezing noise.

By this time people had flooded my room and I lost sight of Kyle, the doc in the room prescribed
epinephrine. They shot a dose into my IV it was one of the most horrible feelings ever, this incredible rush went up and down my body. My head began to feel has if it was being squeezed in a vice. The pain seemed to make me sick to my stomach and I then vomited.

After that, nothing, like I was sleeping and that is it. Then I became half aware, not alive but not dead, I could see streams of flashing lights passing by my face. I felt weightless, like I was in a shell, I knew what was happening wasn't right but I wasn't sure what was happening. Then my condition changed I was now able to hear and feel pain. I couldn't speak nor open my eyes, not even move.

When I heard someone say, "Ok, ready, get back." I knew I was just about to get shocked, in a way I was relieved because I knew they were working to get me out of this unusual state.
"1, 2, 3 clear," Immense pain shot through my chest, Kyle told me that when I came to I yelled out of pain. As soon as my eyes were open and I saw all the faces staring at me, I began to cry. When I started to cry the whole room seemed to let out a sigh of relief all at once.

My mind went into survival and blocked out most of my memory from that point on. I remember someone told me to hold still, and they cut my bra and shirt off to put in a central line.

I remember a nurse being rough when they lifted me up to move me and pulled out the central line! (I remember yelling at her.)

Then there was people trying to get a picc line in because the nurse ripped my central line out. I remember failed attempt after failed attempt. The man that was putting in or at least trying to put in the picc was using a ultra sound to see where the artery was. Then after he failed 5x he sent a lady to try, he took the ultra sound machine. I told her that she would need it she rudely said back,"I don't need that, if I can't get it, no one can." Well with that kind of statement she better get it on the first try! Guess what, she didn't get it the first time, nor the second time, nor the third try, at that point I said,"you are letting your pride get in the way of me getting the picc."

She got pissed, and said,"I am done," and stormed out of the room. Finally the man that tried before came back and got it, I could finally rest.

That was just the start of a very long recovery, I have had ups and down in this recovery, no one tells you how much havoc CPR/shocks cause your body.

I was fine for about the first 2 weeks but then anxiety consumed me, replays of that night would flash in my mind. Every little movement that might be different from my heart made me freak out thinking I was going to die.

This was the 2nd hardest thing in my life I have gone through, I don't really ever want to top the first.

My anxiety is much better now, taking it one day at a time, building up my strength, working very hard at getting back to where I was, but I am not there yet. That is where you come in, I need your prayers still and always, to help me recover, emotionally and physically. Love.

Wednesday, May 18, 2011

My thoughts, my dreams my disected heart..

This was something I posted to a CF forum, but I thought it might help other people understand what we feel as well.

I have a draft waiting to be finished about exactly what happened this last month in detail but it is late and I need to get up early. So perhaps this weekend, I will post it but for now here is just a little something.

So I still wonder and dream about the future even though it will be cut short. I lean towards looking on the positive stories and hope for the best and have faith that my outcome will be just as positive if not better. Then there are days when I feel cheated and robbed of life, the days where I see a daughter and a Mother together and I long for that relationship. When I see a Grandmother and Grandfather with their grandchildren, and I realize that will never be me. I am not a negative person, not at all, in fact my closest friends will tell you the opposite of that and that I need to be more realistic. So please don't think that I am some, "woe as me," "Eeyore," having a pity party person because that is not the case at all.

I guess what I am trying to say is, with my naturally optimistic attitude on life it can blind me from the truth or the inevitable and most of all reality. This can almost always lead to being let down and bitterness in our hearts and in our attitudes. So what do you do to help your self cope through these tough topics what helps you live on even when your dreams (or at least some) will never come true?

What happens when you have a passion for something that you know that if anything was meant for someone, this was meant for you to do? But you know deep in your heart it will never come true...Was it a lie, was that passion, that longing, that dream futile and false?

Or is there more then meets the eye, do you all believe everything happens for a reason? Is there a reason why my life long dream to be a mom might not ever happen? It almost seems very cruel to put that desire inside someone who will most likely never have children. Sorry for the ramble, I was just having a long, "think." :)

Friday, April 1, 2011

April Fools- I'm not pregnant :)

Ok, so as of late I have been horrible at updating my blog. Which I think is stupid, there is no reason that I should not be doing this!

We moved into our new home and we got a puppy and I got a job! Man, so many things.

We started an adoption process and also are trying to have a baby, we think that God will allow it to happen if he wants it to.

Kyle has been working hard at Helio and I am being a housewife with a new puppy! I got a job as an academic coordinator for foreign exchange students. What is so perfect about this job is that I work from home most of the time! So I will be able to work even when I am not feeling 100%!

I got a cold about a week ago and it went straight to my lungs leaving me feeling like I can't breathe, fevers, body aches and lung pain. No fun! When I get like this I start feeling depressed and so disabled from CF. I HATE BEING LIMITED FROM CF, It is so frustrating when your mind wants to do a thousand different things and then your body just starts yelling at you to STOP!

I most likely will need to go into the hospital soon, I have a sinus infection from my environment change, *sigh* CF always gets in the way!

Sometimes I just want to scream, I am human just like everyone else! I have dreams and desires like everyone else! I am not just a girl who is sick, who is dying, CF does not define me, I am my own person without CF! It is something I deal with all the time but it is not who I am.

There are so many people on FB that I know who are sick, who have died and who have so much pain from this horrible disease, there are SO many of them, way more then you could ever realize, more then I even realize. CFers are all over the world, on every Continent!