"It would take an acrobat and I already tried all that"

I put this weird pressure on myself to make sure everyone I'm in contact with feels comfortable. I especially want them to be comfortable with my illness, my death. I feel like I need to only write positive things on public forums, or just keep my writing to a minimum. So, I keep a lot in. Really, think about it. No one wants to be the drag on someone's perfectly good day. When I first started this blog, I envisioned writing so much more frequently. The truth is, I had no clue what this would be like. I had no idea what it would take to fight.

Reality is, this is ugly. Attempting all that "I'm ok" and "It is what it is" talk is just not possible all the time. Not if I have any desire to be honest. The simple truth is, there's no point in having this blog or writing one word down if it's not real. I don't have the time to waste. Frankly, neither do you, although most think they do.

I'm not saying all that talk was an act. It wasn't/isn't. I just don't know that it applies anymore. I can't keep worrying about whether or not strangers and acquaintances think I'm a drag. I'm expecting a bit much of myself there, I'd say. No one has to read this if they don't want. I'm not apologizing or avoiding anymore. What good does it do me at this point to care who thinks I'm cool enough or together enough or whatever? None. At all.

Here it is, man. I'm not cool. I'm not together. Not even close. I'm a hot mess. I feel all of the worst possible things you can imagine. I feel scared and anxious and sad and bitter and cheated and there's nothing anyone can do or say to fix it. Absolutely nothing. And I hate it. No matter how much my family and friends love me they can't make this go away. There's not enough money in the world to buy me out of it.

Since my appointment with my doctor on Monday where we discussed my end of life wishes, I haven't been able to feel normal again. Up until this point I could always find away to put it out of my mind and truck through each day looking forward to whatever was planned next. I try to keep myself busy so I always want to keep going. Now, I can't seem to figure out how to push this to the back of my mind so I can just live. Each day, just a little. I want to feel alive enough to keep looking forward when the reality is I want to go anywhere but forward.

How do I do that? I don't know. Unfortunate thing is there's no handbook for this job. Trust me. It's a job. It's hard work to breathe. It's hard work not to be a jerk when all I ever am is tired. It's hard work to remain sane when some days all I want is to remember what it feels like to be a woman. A young, single woman with dreams and desires and all of those normal things. Yes, they still exist in my head and my heart and being confronted with them everyday and working to ignore them is really hard work. The hardest work is seeing the people I love hurt because of what scleroderma is doing to me. I'm more than sick of all of it.

The one thing I will hold back is the many expletives that really won't make anything I'm saying any more true, no matter how much I feel like saying them.

Bottom line is, I'd give anything to be going to sleep tonight in my own little crappy place with a totally flawed significant other only to wake up the next day to go to a job I only marginally like and barely pays the bills. I hated those days when I had them. Right now sounds pretty close to paradise.

The self indulgence was nice for a bit. Thanks.