My day starts with lots of coughing which in turns means I need to do a breathing treatment and vest session ASAP to get as much junk out as I can and to get my lungs to calm down. Usually I’m coughing quite a bit throughout the night as well. I always try to “cough it out” to avoid getting up to do a treatment, but that doesn’t always work. I haven’t had uninterrupted sleep in so long. I can’t remember when the last time was. I have just learned to sleep in spurts. If you total the actual amount of time I am asleep at night it would be between 4-6 hours most of the time, between the coughing, possible breathing treatment to calm the coughing, bathroom breaks and tossing and turning. Continue reading
Just wanted to fill you in on some of the important doctor appointment dates that I have been waiting on. Of course they are not soon enough for my liking but I shall deal with it.
Before I even get into these appointments, YES taking care of me IS a full time job that doesn’t pay well, however my reward is my family. Continue reading
It was great to have my sister and aunt here for a few days. They got here Wednesday afternoon and once we had some girl talk we decided to go for pedicures. Thursday was mom’s birthday so we were off to mom’s favorite Japanese steak house for lunch. After lunch we were just out and about. I had to cut our outing short because my stomach was not treating me nice and I needed a good breathing treatment, not just on my travel nebulizer. Continue reading
Today was clinic day and a short one at that, in terms of normal clinic days. No complaints here. It seemed like everyone was on vacation. My question is, why didn’t they take me with them? haha Continue reading
Today is day 25 of IV Zerbaxa, counting from day one in the hospital. I was switched to oral Levaquin from IV when I was discharged from the hospital 14 days ago. I tolerate IV Levaquin way better than oral Levaquin. Levaquin makes me super nauseous therefore I am nauseous most of the time. My stomach is super sensitive right now so I’m trying to eat lightly. I’m trying to eat things I ‘think’ will be smooth on my stomach but it doesn’t seem to be working all that well. haha Continue reading
What does it mean to be my friend, to love and care for me? I’m going one step deeper with this one. What does it mean to be my friend, me being a person with Cystic Fibrosis. I’m not going to “beat a dead horse” on this subject but it has been on my heart with all that’s been going on with me. Continue reading
I was paroled from lock up on Monday the 7th after 12 long days. It seems that every time I’m on the ride back home from the hospital that I notice all sorts of new things along the way. This time it was road construction. The Smokey Mountains are never a new view to me but the drive from the hospital to our house has one of the best views of the mountains and I am always in awe of them. Never fails, it’s my favorite drive with the best view. It’s home to me. Continue reading