Skip to main content

Posts

Showing posts from November, 2017

Thankful in the hard times

With a disease like cystic fibrosis, it can be easy to get lost in all the pain, fear, and frustrations and lose sight of what we have to be thankful for. This year has been rough. I started the year with a blood clot, quickly followed by increasing worry about the state of health care in America, all while losing a significant amount of lung function and dealing with way too many lung bleeds. However, no matter how hard the year, I believe it’s always important to reflect on the many blessings we have been given. It’s too easy to wallow in self-pity and pain otherwise. So this post is dedicated to just that—thanking God for all He has given me. 
I’m thankful for... My new husband ❤️. As I’ve said before, many CFers wonder if they will ever find someone who will choose to love them day in and day out with all the stresses that come with cystic fibrosis. Being the spouse of someone with CF is not for the weak or faint of heart. My husband has taken a crash course in medical terms, health…

The day that was yesterday

Wow. What a day yesterday was. Here’s what happened:
At around 4:45, my hand became numb and tingly. Because I’m a knowledgeable SLP, my first thought was “oh my gosh I’m having a stroke”. Although the numbness was my first (and only) symptom, it was so bizarre how my hand just all of a sudden lost feeling in it. About 5-7 minutes into the numbness sensation, it started traveling up my arm and reached about midway up my forearm. Due to my history of a PE and being on Amicar (a blood clotter) right now because of a lung bleed, pretty much the only option was to go to the ER. I called CF clinic, and they confirmed that I should head over there. The ER is the most disgusting place, especially in the middle of cold and flu season. They also apparently have never heard of CF protocol because I had to demand to be put back in a room immediately and for everyone who came in my room to be gowned, masked, and gloved. From the beginning to the end of the 5 hour ER stay, it was pretty disastrous.…

My port, aka my best friend

My port, aka my best friend
If you have a chronic illness and are thinking about getting a port, you need to read this post. If you want to know more about ports, you need to read this post. Or, if you just like following along with me, you need to read this post! 
I’ve had a port since 2009. After repeated blood draws and PICC lines, my veins were shot, and every time I needed IV antibiotics I had to have anesthesia to get a PICC line places. Typically, this procedure is done while awake, but my veins would no longer cooperate. Making the decision to get a port was not easy for me; I fought it for years. I did NOT want anything weird sticking out of my body. What 16 year old does! However, I finally caved and decided the pros outweighed the cons. The breaking point for me wasn’t the anesthesia from the PICC lines but the repeated failed, miserable blood draws. Nurses would poke and prod and dig just to try to get a vein to cooperate. Let me tell you, it wasn’t pretty. 
The procedure to …