Sunday, January 30, 2011

randumbness

So first a health update...after 1.5wks off antibiotics I ended up back on them. just finished a course of cipro. still on prednisone..um yay (not!). Its been a rough few weeks with fever and a lot of pain. Upped my vest to atleast 40 minutes 2x a day (preferably 3x). I spend more time hooked to machines than not...don't get me wrong I am very very thankful for those machines. Started on wellbutrin 2wks ago...I think anyone dealing with everything that I have to deal with would be somewhat depressed and I was due for tweaking of those meds. My heart....Lopressor was working good but my hr is staying in the 120s now...I see cardio at the end of the month and fully anticipate a dose uppage. Yesterday my 02 didn't want to go over 92. I think that covers everything. I do everything I can on good days and rest and take it easy on bad ones. Got several dr appointments in the next few weeks

So what I have been doing? Watching DVDs, listening to music, discovering new podcasts and reading lots of books. I have developed a huge CD collection and spend yesterday organizing them. And an even bigger book collection. Hey gotta have entertainment when I'm doing treatments and sick. I'm immunocompromised thanks to longterm pred and so with the flu and other nasties going around I am somewhat housebound. Can go out where it isn't crowded if I wear a mask. Other than that its home. So finding new ways to stay busy. Teaching myself to crochet with some help from my grandma, writing lots etc.

I have been priviledged to spend lots of time with God. I know not everyone has the oppertunity to spend so much time just sitting in His presence and seeking Him. I find myself continually talking to Him throughout the day. I have spent lots of time in His word and find myself remembering scripture throughout the day. Working on memorizing psalm 91, reading the new testament, listening to John and the Psalms and doing a Max Lucado study on Hebrews. God has really been working on me about "be careful little eyes what you see, be careful little ears what you hear"...so I have been really evaluating what I read, watch and listen to

Its coming up on 2 years since the rape..but thats a whole nother post.

I guess thats all...thats my life

Monday, January 10, 2011

A new year..updates

I really havent posted anything because theres really been nothing to post. But on this rainy, cold and messy day I decided what better to do than blog?

My health....not a lot to say. I'm about the same. Stable. But as always happens showing signs of infection just a few days off of antibiotics. I've pretty much been on antibiotics continiously since august with a few days at most in between cycles/courses. As long as I'm on antibiotics I'm fine with very few signs of infection. I was given high dose IV steroids while in the hospital at the end of august/first of september and sent home on prednisone. Was on that till mid october. Off of steroids all of one month and have been back on them since mid november.

The bad? I've started having mucus plugs again...as in some nights/mornings it takes 40 minutes of the vest, my mom doing percussion therapy and two vials of hyper-sal to really clear my lungs out. And I have NOT had ANY mucus plug problems from the time I started hyper-sal(about 3 years ago) until now. Anyway hoping I can stay off antibiotics...I'm resistant or allergic to tons and have very few I can take.

Hoping atleast the prednisone is keeping the damage to a minimum.

Thankfully because of staying in, wearing a mask most of the time when i go out and lots of hand sanitizer I have managed not to catch any viruses etc! Which I am thankful for!

My brother is getting married in july and my goal is to be off steroids long before then because I'm a bridesmaid and I don't want to look all swollen and crappy :-)

I go to the cardiologist in a few weeks for a check up to see how my heart med is doing. Praying no dose increases and no anything!

Through it all I have been at peace. I hate suffering, I hate being in pain and yes I know CF is progressive and ultimately fatal. I know my CF is progressing and it does scare me. But in the midst of it all, I have peace. The Peace only God can give. "Sometimes He calms the storm, sometimes He calms His child". I have taken great comfort in spending lots of time with God...journaling, writing letters to Him, praying, praise music and listening to and reading His word. My relationship with Him has grown and gotten so much stronger through all these trials. When you know the God who created the universe is holding you in His hands...well that just tends to give you peace. I know I never walk alone. I find the more time I spend with Him and listening to praise music etc and the less time I spend doing other things...the more at peace I am and the more positive my outlook. And I am learing to give thanks in all things...not just the good.

Please be in prayer for my whole family. We have had lots of difficulties with illness etc. But yet we have so much joy too as my brother is marrying a WONDERFUL young lady who we are happy to welcome to our family