Cause they would go perfectly with my pity party. Really its been a rough week. Sunday night bad coughing fits and after finally got those stopped my heart rate started soaring and I almost passed out. Yesterday I was so weak from everything that I could barely get out of bed.
Last night started coughing bad again. This time there was a little blood though. I don't know how one pair of lungs can have so much junk in them. Anyway coughing stopped but I kept waking up every hour or two needing ventolin.
Slept all morning and have been fighting the nausea all day. Ensure and yogurt are all I've had.
I don't mean to complain....but I do want to give a picture of what life with CF is like
Awaiting my heart doctor appointment next tuesday and hoping for some answers. And then hoping my pulmo has something new up his sleeve...he's always one for thinking outside the box so hopefully he has some ideas. He and the heart doctor are in the same practice so hopefully they have discussed me
I was a bad girl and ran out of atrovent and never got it refilled. Finally refilled it today so hopefully that will help with the breathing!
I'm just frustrated. Like I asked my mom..."what if this is as good as it gets"? Her answer is we'll deal and learn to accomodate my new needs. Did I mention I have awesome parents?
I admit I am scared. Somehow the combo of heart problems and worsening cystic fibrosis lung disease don't seem like a good combo.
I'm holding on to God and know He's holding me in His hand. "oh no you never let go through the calm and through the storm, oh no you never let go, lord you never let go of me"
I'm trusting He will give me strength and courage to face whatever my future holds.
That doesn't mean I can't cry though!
Tuesday, September 28, 2010
Monday, September 20, 2010
life goes on
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.
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.
Thursday, September 2, 2010
Its been a week...or I'm gonna start forwarding my mail to the hospital
Okay so hit the Er last thursday...spent 6hrs getting fluids, IV zofran, mega breathing treatments and having tests done. Got sent home. Back friday....more fluids, more zofran, more breathing treatments and IV steroids. 6hrs again. They were really on the fence about letting me go but did. Said if it got worse to come back to be admitted.
Saturday early morning...back this time with bags packed. More tests, oxygen, IV steroids, breathing treatments and chest percussion therapy with a percussor. Oh and IV zofran. Changed my antibiotics and doxycycline must have been the magic one because after a few doses I had no fever. T
Diagnosis CF flare, asthma flare and "regular" bronchitis.
So they finally let me go at 1pm monday. There are now concerns about my heart rate and oxygen levels though. So I see a cardiologist tuesday and then am getting an appointment with my pulmo. Already seen my family doctor who I think if she had her way would have kept me in a little longer.
I am still having major trouble with nausea and living on phenergan and a very limited diet. And having issues staying hydrated. I've been told to eat anything I want...just get food in and to drink anything I want as long as it has no caffeine....even all the sprite I want! And yet I've been to sick to enjoy being told those things
I have to say that my hospital stay went good...as good as it does for anyone. I was concerned with my anxiety issues and all that it would be really rough. Not so. Everyone was fantastic to me...from the RT to the nurses to the doctors to the CNAs to the dietician. Everyone was knowledgable about cystic fibrosis. It was a good experience...not one I really want t o repeat anytime soon haha but atleast I know I can make it through a hospital stay emotionally. This being my first in quite awhile.
I think the whole ER, respiratory therapy and 3rd floor know me by name at this point.
Glad to be home and hoping some of the upcoming appointments can shed some light on things
Saturday early morning...back this time with bags packed. More tests, oxygen, IV steroids, breathing treatments and chest percussion therapy with a percussor. Oh and IV zofran. Changed my antibiotics and doxycycline must have been the magic one because after a few doses I had no fever. T
Diagnosis CF flare, asthma flare and "regular" bronchitis.
So they finally let me go at 1pm monday. There are now concerns about my heart rate and oxygen levels though. So I see a cardiologist tuesday and then am getting an appointment with my pulmo. Already seen my family doctor who I think if she had her way would have kept me in a little longer.
I am still having major trouble with nausea and living on phenergan and a very limited diet. And having issues staying hydrated. I've been told to eat anything I want...just get food in and to drink anything I want as long as it has no caffeine....even all the sprite I want! And yet I've been to sick to enjoy being told those things
I have to say that my hospital stay went good...as good as it does for anyone. I was concerned with my anxiety issues and all that it would be really rough. Not so. Everyone was fantastic to me...from the RT to the nurses to the doctors to the CNAs to the dietician. Everyone was knowledgable about cystic fibrosis. It was a good experience...not one I really want t o repeat anytime soon haha but atleast I know I can make it through a hospital stay emotionally. This being my first in quite awhile.
I think the whole ER, respiratory therapy and 3rd floor know me by name at this point.
Glad to be home and hoping some of the upcoming appointments can shed some light on things
Subscribe to:
Posts (Atom)