Fear

So first off...I made it off of prednisone last monday! YAY! BUT ended back on it tuesday BOO. And not even a week after finishing bactrim I ended up on Zithromax. Fever and junky lungs came back sunday. We're hoping I will be able to get off prednisone in a few weeks and this won't be forever. I'm afraid the doc was right though and the 'roids were what was keeping me from getting so sick.

And now my hyper-sal has been upped to 3-4x a day from 2...so thats 3 inhaled meds 3-4x a day atleast. Plus vest/pep/acapella/percussor...whichever I choose that often. I don't know whats going on cause these last few days I haven't been able to tolerate my vest...I've tried every style and size I have..

Think we found whats causing the shortness of breath.....when at rest my o2 is usually 96-97 but as soon as I get up and move around they drop to 87-92. a few minutes after sitting back down and resting they go back up. And during all this my hr sores to 150-160. But is this cardiac or pulmonary? Maybe the heart doctor will have some answers monday

Now on to fear....I've never been one to have a lot of fear. But as my health fails I am facing more what-ifs and more fears. What if I go to bed one night and don't wake up? What if the doctors can't do anything else for me? What if this is my new normal and my CF has progressed that much?(which I do believe). What if the next infection goes septic?, What if. what if

Trying very hard to give them to God. I know He is control but when facing this kind of stuff I do have a hard time remembering that. Looking up and personalizing verses about fear. Praying. Talking with my mom and praying with her. I think its all helping.

I'm just living each day as if it is my last and hold on to Jesus cause He's holding on to me

Life

So life goes on...this weekend Josh and Kara came home with the newest member of the family...Sarge the puppy! Sarge is ADORABLE! Seriously his face looks like wishbone (anyone remember wishbone?). Unfortunatly Ellie and Rosie didn't find him so adorable. Yeah my babies don't play well with others.



So I got to spend some time puppysitting...nothing like sitting in the recliner with a sleeping pup watching tv. Course Ellie still gets in my lap...but um 70 pounds of dog is a lot.

So anyway...tomorrow is valentines day. I was feeling a little down because I have noone special...ie boyfriend. But I am flying high tonight after seeing what a wonderful family I have. I got a card and candy from one grandmother, a stuffed monkey from my mom and a card and money from my dad (and the card from him meant the most!). I may not have a boyfriend but I have a God who loves me, a wonderful Saviour, a wonderful family who fights CF with me...its not just my fight...its theirs too. They do so much for me...they make sure I get the best medical care no matter the cost to them. I am blessed! I don't know how someone would fight a disease like CF without such a family.

God is teaching me a lot right now. To use my mom's words...He's teaching me to step out of the boat. Trust is a hard thing for me. I'm a worrier. I think of the what-ifs. And that keeps me from enjoying each moment the way I should. God is teaching me to have faith in Him...I see all the ways He cares for me and that has been an encouragement to trust. He's teaching me to trust my parents...they've never failed me. "walk by faith".

My health...I have good days and I have bad days. Generally I am doing all my treatments 3x a day on a good day. Still on Bactrim and STILL on prednisone but trying to wean off. I have some big adjustments as my wonderful doctor is getting ready to go on maternity leave. I have another excellent family doctor chosen but its still an adjustment. Especially as he is out of town. I see cardiologist on the 28th and I guess we will see where I am with my heart. My heart rate is still high...100-120 which is lower than 160! And I'm only on half a lopressor 2x a day so I fully expect that to be upped

Frustrated

I am frustrated today. Sometimes it seems like my life revolves around my treatments and medicine.

8AM have to take oral meds
9AM albuterol, atrovent, hypersal
vest or acapella
symbicort

noon-wellbutrin, ibuprofen

2pm- albuterol and atrovent
vest or acapella
ibuprofen if needed

9pm albuterol, atrovent, hypersal
vest or acapella
symbicort

before bed-night oral meds and ibuprofen (if needed, usually is)

In addition since I've had such bad dehydration issues I have to be careful and make sure my salt and fluid intake is adequete (powerade slushes have helped this!)

Morning meds and vest take over an hour, same with pm.. midday about 45 minutes.

This isn't including enzymes, nausea meds or tylenol. Don't get me wrong, I thank God everyday for my vest and for drugs like hypersal and albuterol! Its just time consuming. And if I go out then it just means inhalers or portable neb treatments and my flutter. So I don't even get a break then. I'm up to 40 minutes of the vest am and pm...20 minutes of vest or acapella midday. And this is when I am well!!!!

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

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

poetry

Darkness comes
Fear it brings
What lurks
Around the bend
scared to death
shaking crying
praying for the
morning light

Scars
A reminder of the past
When I try to forget
Scars ensure I never will
Always a part of me
I can move on
But I can never forget

He knows my pain
He holds me close
My saviour loves me
No matter what
As I cry He
Wipes away my tears
When He sees
my scarred arms
He holds out his
nail scarred hands

Rape
A 4 letter word
So small
Yet so powerful
A 4 letter word
that turned my life
upside down
A word that will
forever be
a part of me

Butterfly Butterfly
Don't you want to fly
you're not meant to stay
on the ground
oh no you are meant
to soar
Trust me.
Spread thos wings
and fly, my precious
butterfly. I created
you for better things
I gave you wings to fly
so come on and soar
my butterfly

Darkness comes
She no longer sees in color
Her world is dark
Shadows loom in her mind
Ghosts of past haunt
Memories of yesterday
Hold her prisoner

Hope
without it we have nothing
with it we have everything
noone can steal our hope
it may get buried, hid or broken
But its always ours to find
when we find that hope
nothing is impossible

ranting

Yes this is a rant and yes it may get controversial but I need to write this

I have noticed two things...there is a lack of christian resources for rape survivors and those dealing with mental illness. I also have noticed when surfing christian sites even ones like crosswalk rape is not mentioned and mental illness is talked about as a lack of faith.

People who have no issue with going to the doctor for a cold or taking insulin for diabetes consider going to therapy or taking anti-depressants a lack of faith. People who want murderers and robbers punished blame rape victims. Rape victims are often treated as criminals.

Antidepressants saved my life. I fully believe God worked through my doctor and those meds. In the year from my rape to starting seroquel....its amazing I survived. I saw the world in black and white....all the color was gone. I had nightmares. I used a nightlight. I was scared of my own shadow. Didn't want to leave the house. Slept in the hall with Ellie. Now I see in color...I am in a place where I can concentrate on healing. No those meds aren't a miracle but they greatly help. My years of therapy have also helped. God has worked through those medications, my therapist, my doctor.

Would you tell someone with cancer to not undergo chemo? or someone with diabetes to not take insulin? So why tell someone with depression, anxiety or PTSD to not take anti-depressants, anti-pyschotics or whatever

This time last year I was suicidal, flashbacks ruled my life and it seemed like residential treatment was the only option. This year I am still struggling but I am not a danger to myself and I have hope

Christians get raped, they get depression, they suffer PTSD. And they shouldn't have to hide or be afraid of the response of other Christians. THey should be accepted in their churches and prayed for and over just as those with cancer, heart disease etc are.

Those issues impact my life as much as my cystic fibrosis, heart issues etc except that I fight depression and PTSD on my own. I am overcoming rape on my own.

Learn from me. Dont hide. And don't treat people like me as heathens with no faith.