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
Tag Archives: life changing
2fer – health update & transplant talk
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
Hodgepodge post coming at ya
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
One month ago today…
(This post is bound to be all over the place so bear with me) One month ago today my mom left this earth. I feel like I have been treading water for the last month just trying to stay afloat. I am an emotional mess at times when the memories flood in or something triggers the overwhelming feeling of not having my mom here anymore. Continue reading
The next chapter: Life with Oxygen
Today was a day that I have not looked forward to happening in my journey in life with CF. The day that oxygen was delivered to my house for 24/7 use or even only night time use. I have always thought that when this day happened it meant “I was getting sicker” and that my life was on a downward spiral of CF progression. In my life there have always been milestones that have signified different steps of CF progression to me. Not everyone thinks the same as I do, this is just me. Continue reading
Home Sweet Home
After 16 days in lock up I am home. It was a long 16 days. The first 10 or so days of my stay I was sick enough that I didn’t care that I was there. Yes of course I wanted to be with my family at home but I knew I needed to be there to get better. On day 7 I had a bronch which was followed by days of a lot of pain and major tightness and wheezing in my airways. So needless to say my asthma went crazy and I had to put up with it and it was NO fun! It took upping prednisone to 80mg per day (40mg in the AM and 40mg in the PM) to get the tightness and wheezing to lessen to a tolerable state. Continue reading
Happy birthday Gert
Every February 1st at 3:05pm CST my phone rings….but not this year. This is one of the first firsts without mom here, already. Mom would call at the exact time I was born to tell me happy birthday, it was her thing she did. I never thought it was weird that she didn’t call earlier in the day because I knew the call was coming. Some years she couldn’t wait that long and would say, “sorry, I tried to wait until 3:05pm but I can’t wait anymore. Happy birthday Gert! I love you!” Gertrude has been my nickname with my mama since I was a baby. She called me “gaggy Gert” because I would projectile vomit before we got the CF diagnosis and I got on enzymes for my digestive issues. “Gaggy Gert” morphed into “Gert,” “Gertrude,” “Gertrude La Rue” and almost anything that sounded good with Gert attached to it. It was cute and all until mom would yell, “Gertrude, where are you? get over here!” across a store when I was a preteen. Continue reading
Miss my mama
My life changed forever at 8:55pm (CST) on Tuesday January 19th. My mom breathed her last breath as my head was on her shoulder and her hand was in mine. I never imagined that I would have to go through this at this young age. Your parents are supposed to live into their 80’s and 90’s, not the young age of 59. Continue reading
Ouch! That hurts!
“How are you feeling?” is a common question asked to me and much more so when I’m actively sick (if you know what I mean). Let me take a moment to answer that for you now. Continue reading
When will you be better?
People ask or want to know when I will be better. That is a great question. I have not felt great for a good while now, 2-3 months maybe. I was in the hospital for 9 days and you would think I would come out better. Being released from the hospital doesn’t mean I’m fixed by any means it means hopefully we have things situated and are heading in the right direction to being better. Continue reading
CF Happens 