Friday, August 15, 2008

yes, i'm still here, just...

well, i don't know. been in a funk of sorts. i've got this surgery thing coming up and i am really not happy about this. i'm scared. and i just don't want to deal with what i'm feeling about it all.

actually, i don't want to deal with any of what i'm feeling, about anything really.

i think all the 'keeping a stiff upper lip' and all positive all the time has caught up with me. i'm so tired. not tired of fighting to live. just the '[fight' maybe. it's just the day to day is wearing me the hell out.

i had a doctors appointment tuesday. one of my specialists. he's a nice guy. better than alot of doc's out there i'm sure. he's very patient and will wait on you. for you. that's why you spend at least 3 hours in his waiting room. and people don't mind. anyway, he, juan, and i were talking about how well i'm doing. the doc is just so excited with how well i'm doing that he was practically giggling. my speech is better, my mobility, breathing, heart function, dexterity, etc... even my labs are really good. he admited that he really didn't think that this day would come, and feels that i willed myself "stable". i think he's right.

there have been, and still are, days when i just decide that i am going to do whatever i need to do at that moment. decide that i'm not going to deal with the pain at the moment. that i have to grin and bear it. that i will be positive about all of this because it could be so much worse. because opposite of positive is not an option to me.

then he went on to say that i must still be mindful that all this doesnt' mean that i'm out of the woods. "these are very serious diseases ....." eventhough he wishes that it were that simple. that that was the case. i should'nt get cocky and confident and stop taking the billions of pills that i still have a hard time managing, eventhough i'm taking way less that have ever taken since i've been sick. i could hear in his voice that he was trying hard not to say the word. that damn word. the word that means everyday that you wake up is a blessing because you are not suppose to be here because something has invaded your body, your brain, and is stealing your life. the word that means you are no longer how you used to be. that your life is no longer how it used to be. nor will it ever. but the opposite of positive is not an option for me.

but then, he went on to rave and say "how good you look!", and all sorts of things along those lines. and then, he said it. what i probably hate the most, and he should know better. he said "if i didn't know any better, i'd say you don't look sick at all!". now, i know he meant absolutely nothing by that. especially him. he's been through hell and back with me several times and we have a unique relationship. he was, is just so very happy for me. and i know that everyone else who's said that very thing to me on countless occasions meant nothing by it either. but i still lost it. yep. i did.

yes, i'm much, much better than i've been in a very long time. i've come a long way! but i've yet to figure out how to explain how those words make me feel. i'm dying. so i guess everyone expects me to look the part. well i can't help that i "look great". and i shouldn't be angry about it, right? well, i'm not really. i am vain one, lol. it's just... i don't know. it bugs the hell out of me. i don't like talking about the pain, physically and emotionally, that i'm in everyday. how sick i feel. how it takes me forever to get out of bed just to go to the bathroom. how hard it is to brush my teeth. dress myself. watch a tv show because it's hard to follow what's going on. how my skin and muscles hurt so badly at times (at least 3 times/wk) that i can't stand to be hugged. that my cognitive function and the way i process information practically reduces me to tears. that i struggle with understanding what's going on around me. hell, it takes me forever just to blog. but the oposite of positive is not an option for me.

yeah, yeah, sob story. sorry, i know i've gone off on a rant. i'm just tired. and i'm wanting my life back.

but this is my life. this is what's behind how 'good i look'. so i cried. because i know now that this IS my life. now. and i can't get back to how i was. and i am so very sad. and tired. and frustrated. and i don't want to deal with any of how i'm feeling about it all. and i wish i could feel as good as i look.

and... i am still positive.

be well :)


Lovebabz said...

Good monring Princess,

Girl go on and share your feelings. This is your blog to do that. Strenght doesn't mean you can't cry or fall down or feel bad. Strength means that you can pull yourself up.

We all have our moments. And we should take them. God knows I have...I am having one now. Life can be overwhelming then through in some diseases and it can downright break you down.

But our will to live is strong. Yours is beyond strong. You are amazing. Your spirit is brilliant. It is like looking at the brightest star ever. I am in awe of your talents and your determination...I certainly could use some!

Blog your feelings and say what you need to say. Feel everything and do not shut yourself off. Now don't egt me know I am not going to allow you to wallow for days and days on end. But you must allow yourself those moments of discontent and failings.

I mean God knows I do nothing but share my feelings! LOL!

Love you to the moon and back!

Lisa Copen said...

Saw your blog on "but you don't look sick!" and thought you'd be interested in this...

Thank you so much for your blog and posts on chronic illness. We're excited that you may be interested in joining our efforts for National Invisible Chronic Illness Awareness Week, which is September 8-14, 2008.

The theme this year is "Hope Can Grow From The Soil of Illness."

We have tons of information on our web site, including facts/statistics, articles, and some great products from cute t-shirts to white silicone bracelets that say, "Invisible Illness - Visible Hope."

We also have a blog set up at where we provide daily updates about EVERYTHING Invisible Illness Week-- how to help spread the word, news coverage we've received, what people are doing, and daily guest bloggers.

We hope you will consider joining our awareness efforts. A couple of easy ways is to install the "I'm blogging for Invisible Illness Week" badge on your blog and writing a post or two about invisible illness week issues. Another way is to send us a blog we could consider posting on our blog, with you as the guest blogger. We will have guest bloggers daily from August 14 - September 14, 2008.

Again, thank you so much for bringing awareness to living with chronic illness through your web site.

Lisa Copen
Founder, Director
National Invisible Chronic Illness Awareness Week

Torrance Stephens - All-Mi-T said...

good to hear
now stop byv and see me sometimes will ya


Shannon said...

I can't say anything better than Babz, so I'll just say "ditto." And tell you that I love you.

Princess Tinybutt said...

thanks you guys. and i am thankful for you.

smooches :)