Tuesday, January 22, 2008

Trapped and Lonely in a 2,400 sq. ft. Box

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.


Princess Talana said...

I have the fabled MRSA as well... felt like I was wearing a big target when it really hit the news a little while ago. It only bothers me when I'm in the hospital under contact isolation and feel like a freak.

Dancing65Roses said...

Yeah, I feel that way too - except on the pulmonary floor almost everyone is in contact isolation, so I guess it's not soo bad. But I too felt like I had a target on me with the media frenzy. Yuck.

Anonymous said...

Carla, I guess I should have asked you about this a long time ago, but it's always better late than never: What is this thing about your condo in the hospital? You mean there is more to a hospital than ER, x-ray machines, cafeteria, and the occasional psychiatric ward? 2400 sq. ft. is especially unthinkably enormous. What do you put in a space that's 2400 sq. ft. in area?

Dancing65Roses said...

I don't know who you are...
but no, no no no no no no. I live NEAR the hospital. Not in it. You're actually the second person to ask me that... hmm.
My parents own a condo near the city where my docs are, and that's where I live all by myself. And it's big so my parents can stay here with me when I'm sick. I haven't been in the hospital since November? yeah. I did a round of IVs at home that I just finished last week. And 2400 sq.ft. isn't that big - two bedrooms and a den.

Anonymous said...

That's the thing with OpenID authentication. (I use OpenID because I can't remember my own user names... Now that I think about it, I might have even asked about your condo in the past but didn't remember it. Oh the curse of senility!) Sometimes OpenID shows my name. Other times it doesn't. This is Gene. I knew you through Janelle from the Winter Formal.

Talking to stuffed animal has its plus side. Stuffed animal won't tilt its head and look at you as if you speak gibberish. When I return home everyday, I only get to talk to my dog and my fern -- while the dog only gives me that "you are hopeless" look, the fern simply wilts.

Dogs are walking balls of hair that simply sweep up every speck of dust on the floor like a Roomba. You know what you should have? Goldfish. They don't shed hair and won't cause respiratory irritation. You can talk to them, too, though they are as likely to talk back as stuffed animal -- they do move though!

Ann Marie Curling said...

Hey Carla, if it makes you feel better :) I live with 5 other people in a less than 2400sq ft house. I can understand how such a big space could be lonely absolutely, but it's not all that small. :) Just some perspective!

Lots of Love Out to You Girl,

Ann Marie

Matt Todd said...

I also have MRSA. Though i usually keep it to myself since most people are ignorant of the facts and would freak out of i told them from all the media coverage. Being in isolation is good, i think. At least you get your own room and don't have to have a room mate. Not sure how your hospital does it, but i can come and go from my room as i please as well. Just the doctors and nurses that come in are supposed to put gowns on.

My Blog List

Site Meter