Lance2020x
New member
Well I'm pretty depressed right now. I created a new topic because this one isn't about my appointment, it's about what happens to us (at least me) after an appointment.
All in all the appointment went well, I was very pleased with the results. My brother (James) has basically maintained stable stats, and I actually improved a bit in weight and lung functions.
The highlight of the day though was when I struck up a conversation with another patient I had seen around, taking the chance that she too was a CF patient. She was indeed, and it was the first time that my brother and I had met ANYONE in person (other than ourselves) who also had CF. It was very interesting, very touching, and very good for James and myself.
Now, I'll back up a bit to say that, until I joined this website, I had never heard of cepecia, and had never even THOUGHT about the fact that CF patients should STRONGLY avoid being in close proximity with each other (seeing as how I grew up with a brother with CF, I never thought about it).
Ever since I learned these things on this site (me being Obsessive Compulsive as it is) I've been completely freaked out when ever I'm around my brother, constantly washing my hands, trying not to get to close, etc.
So here we are, the three of us CF patients, standing in a hospital making a little triangle trying to keep a good safe space between each of us, having a wonderful conversation.
An hour later James and I are driving home, and as we're driving, though moments before we were joyful and happy, (as we always are with our wonderful doctors and nurses) the psychological depression that always rears it's ugly head after an appointment starts to surface.
We arrive at my place, and James starts to pack things into his car to drive the rest of the drive to his place, a couple towns over.
I give my best friend in the whole world; my brother, a very awkward, "safe" half hug, avoiding close contact due to our differences in health status, he leaves, and I go switch out all the hand towels he used last night and this morning while he was over.
After all this that I have seen and felt today, all I can say is this:
What a fucked up way to live.
If you feel like responding to this message, that is fine, I'm not seeking advice or help, I just need to voice my feelings at this moment to a crowd that I believe can comprehend at least part of what I'm feeling right now.
Tomorrow I will wake up, push all of these feelings back down to my feet, and I will continue to walk.
But right now, in this moment, the fact that you are reading this.... It helps.
All in all the appointment went well, I was very pleased with the results. My brother (James) has basically maintained stable stats, and I actually improved a bit in weight and lung functions.
The highlight of the day though was when I struck up a conversation with another patient I had seen around, taking the chance that she too was a CF patient. She was indeed, and it was the first time that my brother and I had met ANYONE in person (other than ourselves) who also had CF. It was very interesting, very touching, and very good for James and myself.
Now, I'll back up a bit to say that, until I joined this website, I had never heard of cepecia, and had never even THOUGHT about the fact that CF patients should STRONGLY avoid being in close proximity with each other (seeing as how I grew up with a brother with CF, I never thought about it).
Ever since I learned these things on this site (me being Obsessive Compulsive as it is) I've been completely freaked out when ever I'm around my brother, constantly washing my hands, trying not to get to close, etc.
So here we are, the three of us CF patients, standing in a hospital making a little triangle trying to keep a good safe space between each of us, having a wonderful conversation.
An hour later James and I are driving home, and as we're driving, though moments before we were joyful and happy, (as we always are with our wonderful doctors and nurses) the psychological depression that always rears it's ugly head after an appointment starts to surface.
We arrive at my place, and James starts to pack things into his car to drive the rest of the drive to his place, a couple towns over.
I give my best friend in the whole world; my brother, a very awkward, "safe" half hug, avoiding close contact due to our differences in health status, he leaves, and I go switch out all the hand towels he used last night and this morning while he was over.
After all this that I have seen and felt today, all I can say is this:
What a fucked up way to live.
If you feel like responding to this message, that is fine, I'm not seeking advice or help, I just need to voice my feelings at this moment to a crowd that I believe can comprehend at least part of what I'm feeling right now.
Tomorrow I will wake up, push all of these feelings back down to my feet, and I will continue to walk.
But right now, in this moment, the fact that you are reading this.... It helps.