This is a continuation of my “CF 101″ series. The purpose of the “CF 101″ series is to educate people about Cystic Fibrosis using every day language and personal experience. Please click the links for my previous posts in this … Continue reading
A week after I got out of my second hospitalization in two weeks, and my fourth in 12 months, we celebrated my niece’s 19th birthday at the beach. The day was amazing, and exactly what I needed to begin recovering.
The waves were amazing!!
Earlier last week, Ken drove me to a doctor’s appointment. My lungs felt tight that day because of poor air quality, and I am still not fully recovered from my recent flare-up of pneumonia infections in my lungs caused by … Continue reading
I posted this on my Facebook page while I was in the hospital. This story touched so many people that I felt I had to share it here. This is not to challenge anyone’s faith or religious beliefs; it’s an account of the light that a stranger brought to me in a very dark moment. I have not changed the wording or anything, to preserve how I felt when I wrote it.
I am absolutely convinced that this was divine intervention, perhaps she was an angel, or my guardian angel sent her to help. Dozens of people passed me in that hallway, looked at me, and made eye contact, yet she was the only one to stop. I wish I had been able to see her name tag – she had long hair that mostly obscured it. I want to somehow thank her, yet cannot remember enough to even know where to start. I would love to write a letter to her supervisor, to let somebody know what a treasure they have working there.
The transport team works one-on-one with the patients, often seeing patients at their most vulnerable, escorting sick people from one place to another. I guess that I can just share this story right now, and believe that somehow, someone found me in the middle of a busy hallway and stopped to help my wounded spirit. Bless you, Angel, for your kindness. Your generosity will never, ever be forgotten.
I wanted to first say that I am home from the hospital. I was discharged late Saturday, and saw my doctors again on Monday. I will post a longer update in the next few days. I just want to let you know that I am safe, still recovering, and working really hard to get back to a more stable place.
So after being home for just a few days, I am back in the hospital. I’ll post something longer once I get home, because it’s kind of hard to write an entire blog post using just my phone.
My bowel is obstructed and I have a blood clot in my spleen. I am still being treated with IV antibiotics for my ammonia, so it’s basically a trifecta of hell.
I am feeling better each day, but it’s been pretty grueling, physically and mentally. It gets pretty lonely – counting the minutes until each medication infusion is done, or agonizing over each second until medication brings relief for my various discomforts.
I watch the sun rise and set out this window, stuck in this box of four walls that seem to close in inch by inch, moment by moment.
I apologize for the utterly depressive nature of this post, but right now, my mind just feels so dark.
These feelings are some of the most intolerable aspects of my disease – the isolation, the feeling of imprisonment, the sense that I am left behind.
I know that my feelings will likely elevate with tomorrow’s sunrise, but right now, I can’t see the light.
I just got back from five days in the hospital. I thought I’d share exactly what goes into a typical hospitalization for me. I had been sick for about two weeks when I called my doctor this past Monday morning. … Continue reading