Thursday, February 24, 2011

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

Sunday, February 13, 2011

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

Thursday, February 10, 2011

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!!!!