I need to learn how to have fun again.
Friday, September 3, 2010
Friday, September 3, 2010
I realized last night that somewhere during the last 5 years I've lost the ability to just be goofy and have fun. First I was diagnosed with epilepsy, then finding out I have a genetic disease (CVID) that makes me sick all of the time...it's good to know why I've been sick my whole life, but add work stress and normal day-to-day stresses in there, and I lost a major part of me. I want that back! I want to be goofy and laugh and joke and have fun! I don't even really know where to start, or how to go about this, but I want to start on a quest to bring more fun and happiness into my life.
I have frown lines now and lines from crying on my face. I look worried all of the time, and I cry at the drop of a hat some days. I have a beautiful butterfly on my wall to remind me that this is temporary and I'll come out the other side of all of this grief as a better and stronger person, but I think that it's more than time to become the butterfly!
I have frown lines now and lines from crying on my face. I look worried all of the time, and I cry at the drop of a hat some days. I have a beautiful butterfly on my wall to remind me that this is temporary and I'll come out the other side of all of this grief as a better and stronger person, but I think that it's more than time to become the butterfly!
Asthma trouble...
Monday, September 13, 2010
Monday, September 13, 2010
I've been having a lot of asthma trouble for the last week or 2. I'll get it under control, then walk or talk or whatever, and it gets out of control again. It's got a lot to do with why I've been having trouble sleeping too.
The pulmonologist's assistant just called to say they're calling in a prescription for steroids...I'll be able to breathe again, but I'm going to be on steroids and PMS-ing...what fun! 
My pulmonologist is the only doctor who doesn't treat me like a hypochondriac when I'm having trouble breathing. Other doctors do because my O2 sat. is 99%, and my peak flow is generally over 500 even when I am short of breath. I'm not sure whether it's truly asthma that's causing the shortness of breath, or if it's the bronchiectasis (lung damage). Either way, he takes it seriously, and I appreciate that tremendously.
My asthma is also worse at night, and it's been worse over the last few weeks than it has been in months. It almost feels like there's a vacuum inside my chest slowly suffocating me.
I started the prednisone today: 40 mg/day for 3 days, then tapering off. I hope it doesn't cause a bad reaction.
I started the prednisone today: 40 mg/day for 3 days, then tapering off. I hope it doesn't cause a bad reaction.
Prednisone does not like me
Tuesday, September 21, 2010
Tuesday, September 21, 2010
I'm such a mess. I can't think coherently, feel half-asleep after 10 hours of sleep, and am having a hard time making sense of anything. I feel like crying and screaming and tearing my hair out. I'm trying very hard to not be nasty to anyone. I feel so angry and there's no reason for it! I know it's the prednisone. I took a whole (0.5mg) Clonazepam, and I really hope it kicks in soon. I feel absolutely nuts and I know I need to be on the prednisone, because breathing is more important than my mental state...isn't it? I'm trying to work from home but I can't concentrate, and I'm asking stupid questions of my co-workers. I feel like an idiot. Mom keeps telling me to rest, and she's right, I need to, but I can't rest and get my 9-hours of work in, so I'm pushing through. I just needed to vent, I know some of you have similar experiences on prednisone, so I know you'll understand. I'm trying to just bide my time, not start any serious life-changing conversations, not make any big decisions, and just know that in a few days I'll be off of it and hopefully I'll be back in control of my brain and body then. I just wish I could go live in a cave until then...have no one around whose feelings I can hurt, and be able to scream and cry all I want without scaring anyone.
It Could be Funny...
My experience with SubQ is that it causes pretty extreme gas when the infusion is done in the belly. I became so bloated during the infusion that by the time it was done I looked pregnant. I think next time maybe I'll take some Gas-X in advance. I don't know whether it would happen when done in other parts of the body. I'm sure I'll find out from experience.
It Could be Funny...
My experience with SubQ is that it causes pretty extreme gas when the infusion is done in the belly. I became so bloated during the infusion that by the time it was done I looked pregnant. I think next time maybe I'll take some Gas-X in advance. I don't know whether it would happen when done in other parts of the body. I'm sure I'll find out from experience.
