We still really don't have any answers. Is this just a flare? Is this a permanent decline? Is some of it heart related? We don't know. I go back to cardiologist in 1.5 weeks...hopefully for a diagnosis and plan. After that its pulmonology time.
I am back on doxycycline...I don't think the infection got totally gone and has reared its ugly head again. Doxy worked wonderful and quick last time so hoping and praying for the same this time.
Right now my life is all about meds....juggling what time to take what. Spending hours a day hooked up to tubing and machines. But I'm just happy to be alive and home. I thank God for things such as the vest that make my life easier and make me more independant. And for portable nebulizers and acapellas that make me more portable!
More than anything this has really brought me to rely on God. I don't know whats going to happen, I know CF is terminal and will kill me unless something else does first. I don't know what my prognosis is right now. I do know this is the sickest I have ever been
Really I've had to come to terms with the fact that I do have a terminal illness...unless something else kills me first CF will kill me. I will get sicker. I've come face to face with my own mortality. I've come face to face with dealing with issues such as taking medicine that makes me feel worse even if it could prolong my life some. I'm willing to try anything but I want a QUALITY of life! Not just quantity. And given the choice I will choose quality every time.
I've had to learn to pace myself. I can run errands but thats all I can do in a day. I can go to church but once again thats it for me. I've had to give up control and let my parents take care of Ellie some. Neither thing has been easy!
I trust God....I know He has plans for me and He knows the number of days I will live. He knows everything. Even when things don't make sense I have to trust Him. I know He has been with me every step of the way. Faith is easy when things are going good....its the tough times that really push it and make it stronger. I know my God has a plan! He is bigger than CF, heart problems, depression and even death. I'm not afraid of dying...I'm really not. I wasn't made for this world...this is not my home.
I had the experience of being really depressed yesterday. So I prayed...and I prayed for a sign, something to show me that God is still holding me tight. A few hours later I took Ellie out and saw a beautiful orange butterfly that proceeded to almost land on me and continued to follow me around all the way back to the door. I know that was my answer.
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