First, you can go here to see My original montage.
My condo cannot be considered "small." Especially when it's just me here. And for the last week, it's been just me. And more me and me and me and me. Yes, I have a nurse who shows up for 20 minutes per day, but besides that and my internet contact I am alone.
I feel like the 2,400 sq. feet I'm living in is shrinking and I can't escape. It's currently too cold or snowy or both for me to go outside. My lungs do not like the cold, and even when I'm bundled I usually end up coughing for an hour after I've been outside. It puts a damper on hanging out with people if you violently cough for the first hour. I know. It happens all the time.
As a rule, the more the merrier. I honestly don't like being by myself. I'd rather have a hundred people to talk to than be by myself. And being stuck alone by myself is worse. It drives me nuts and I get very bored. I watch movies and TV, knit and crochet, clean and nap, and I'm still bored.
Talking to my CF friends help because some of them understand the loneliness -but I don't think I know anyone who lives completely alone. Correct me if I'm wrong, but everyone else lives with at least one other person. That would be nice. Maybe I'd stop naming and talking to my inanimate objects if I had a roommate.
And now winter break is over and my friends are all back in town and they are all soon to be very busy with school again. This would have been my hypothetical last semester... but had I continued as an chemical engineering major, I probably would have needed a fifth year, even if I had been healthy. Had I continued after I decided to switch I would still be on my second or third semester. I was no good at being a student anymore. I understood the material, but when I'm sick I have no motivation to keep studying. Too bad I'm sick a lot of the time.
So I quit school. I had no choice and I doubt I'll ever get a degree. I'm jealous of my friends who are graduating (especially the engineers... I wanted that so badly) and get to go off and get jobs. I would have tried to find a job in Madison, Minneapolis or Chicago, but honestly I wouldn't have wanted to move away from my current doctors. Not that I like them as much as my pediatric doc, but I would be nervous that I would end up with a doctor who is WORSE if I moved. There aren't that many great doctors out there. I know. I've met a good percentage of the doctors here.
So anyways, I'm jealous of my friends who get to have careers and jobs and families and lives. I'm doing my best - working on my book, but like I discussed with my social worker the other day, I don't really want to finish it - because after I finish it, then what am I going to do?
I want to be a speaker who travels around the country promoting CF support groups for adults, parents, and teenagers. Once the study proves that support increases compliance, I believe this path may be possible for me, if I ever get a smaller O2 concentrator.
I want to make an impact on the world. If I help one CF patient feel less hopeless or inspire them to help the world, then I've done enough, but I'd love to do more.
Ideally I want to be traveling all around this country, Canada and Europe until the day I have to sign up for the transplant list. I want to promote my book and promote happiness and living life to the fullest for other CF patients.
I want CF to have major media attention. I want people to know what it is and to help. I want to comfort children with CF because I remember the first time I realized I wasn't the same as all the other kids. Originally, when I was a kid I wanted to be a pediatric pulmonologist so I could comfort the CF patients - and no one knows what a CF patient needs like another CF patient. Unfortunately I wouldn't make it through medical school, and I can't see patients because of the MSRA that grows in my lungs and sinuses.
That's another topic I'd like to address quickly - MRSA. Yes, it's the deadly "hospital bug." It grows in my lungs and my sinuses and I haven't died yet. Yes, it can be deadly if it gets into a wound and it's not treated right away or it gets into the blood stream. I wish the media would leave it alone. A little part of me dies with each story the media runs on MRSA... At the doctor the other day I ripped out an article on MRSA from People magazine because I didn't want anyone to read it.
MRSA is bad, but Cepacia is worse. Look up b. cepacia and you'll see. At least burkholderia cepacia is worse for me - you probably can't catch that one. The Wikipedia site fails to mention that many CF patients with cepacia die in the next year. It's one nasty bug.
Now I am rambling and hoping that when I check my email again it will give me something to do - something to respond to, or the best scenario, someone will want to come visit me. Maybe if someone were here with me by 2,400 sq. ft. box wouldn't be shrinking so quickly.
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