Friday, November 30, 2012

Lipstick Effect

The acute crashes due to treatments take me back to when I had mono as a child.  I didn't have lipstick back then.  This morning as I shook and kept seeing bright "stars" in front of my eyes, I trembled as I put on some lipstick hoping the facade of bright lips would make the misery diminish.  I hate self portraits, but I snapped the one with my eyes closed and there is the real me.  The me I am trying so hard to escape from, the girl on a ledge, holding it all together minute by minute when this fatigue, pounding heart, shaking hands, dizziness, nausea and weakness converge like the hot humid days of summer when you feel the storm approaching.  My mom left this morning, and I felt a bit like I was sending her off to college, it is never easy for her to leave.  However, I am stronger even in my weakest moments.  I am alone right now besides my baby next to me.  I was at the doctor and despite muscle testing positive for a blood treatment she wouldn't do it feeling I was too weak.  The burst of energy yesterday now requires patience as I am not clearing the infections as fast as we killed them off.  So instead, I rested.  She did a colorpuncture treatment and got me an herbal tincture to help clear the infection from my kidneys and spleen.

I got home and my "nurse" real life doctor friend gave me a hydrotherapy treatment, made my dog dinner, made me dinner and all I could barely do was look up and say thank you.  Sometimes that is all the energy you have is to say thank you, I am dependent upon kindness and generosity and I am lucky that I am receiving those blessings.  I am in bed now listening to my TKS playlist that normally lulls me to sleep, but I just lie here arms so fatigued that I finally willed them to grab the phone and hold it in my hand in case I needed help.  That was two hours ago, so there is marked improvement since I am typing.  Kind of like when I was scared I got glass in my eye...I posted on Facebook at 1am... I am typing therefore I can see therefore I do not have glass in my eye.  Well, here we go again, I am typing, therefore I am not passed out, therefore I am okay.

I was upset with myself earlier today because I try very hard not to put my illness above other people's unique set of circumstances or problems.  But my best friend called and wasn't feeling well, and began describing her symptoms, and many of them were what I deal with day in and day out to varying extent and at that very moment..I wasn't my empathetic self.  I wasn't rude, but I wasn't my best self.  To be fair I was too dizzy to drive myself to my appointment, too nauseous to eat more than a few bites at a time, waiting to see if 1/25 of my blood was going to be removed and shoved back in, and I don't know if this is ever going to end.  Sometimes I put on too good of a face and perhaps if she would have said, man now I know how you feel everyday...lumped the shared experience of misery together...then at least we could have discussed our symptoms together.  Instead, I felt myself trying to "one up" or "yeah I get it..."and "how do you think I feel" and that was not fair.

This is on me, no one else.  I put on a good face, an Oscar worthy well maybe daytime Emmy winning performance most days and hide behind the mask of this is just a minor bump in the road.  Even those closest to me I don't allow them to see the really ugly side of this illness.  I try my best to diminish how daunting it all is, but perhaps I am just diminishing the experience or worse diminishing myself.  Add to the fact that when I am here for treatments everything is super sized.

So to my dear BFF please accept my apology.  I am sorry.  I was snappy and I unwillingly in that moment didn't give you the support and understanding you deserved about your bad day.  In that moment I was so scared that I was going to pass out I should have said that.  But instead I shielded you from the seriousness of the moment by diminishing the seriousness and unpleasantness of yours.  Sometimes I honestly forget what it feels like to be healthy and how scary and difficult stuff that I deal with every day feels when you are not use to it...hell I'm use to it and it scares me to death.  I love you nerd and hopefully you were so tired you didn't even notice.  But in case you did, I am truly sorry.

The lipstick effect, it's a band aid on a gushing wound, but sometimes all you have is a band aid so you better use what you've got and remember that yesterday you didn't have to fake it.

Balancing Blush

Breathe and Focus on the View

The true self portrait - just trying to hold it together

Finished Product...go out and get that Daytime Emmy...

Reality Bites

Arizona Biltmore Resort

When I first arrive in Phoenix it feels like a vacation.  I have left behind the gray fall days and entered a palm tree utopia that suspends reality for resort like living.  Then I get my treatments and reality bites.  A body waking up again from it's chronic slumber slaps me in the face and reminds me this is no Disneyland.  The pay off though is huge.  After three days of intense fatigue and post-treatment effects after today's blood treatment I felt alive again.  This is the reality, when you are smothered by this illness, you are living - but you never really feel fully alive.   So last night when my mom, Sophie and I were able to head over to the resort,  I played the part of healthy girl taking a well needed break from reality in my own little Disneyland, enjoy the "vacation" photos.

Have you been Naughty or Nice

Treated to Fireworks from our Balcony that were taking place at the Resort

Disqus for Festzeit