for the love of the machine

shifting

Alexander McQueen hair shirt...
not quite a cilice, but much easier on the eye.

So, a couple of weeks ago i was taken off of the mild chemotherapy i had been on for over a year to start a new drug that's less aggressive on healthy tissue but just as aggressive on the chronic inflammation causing my blindness.  The good news?  No more traveling 2 hours to be hooked up to an IV for three hours for now.  The bad news?  The new drug is taken twice a day, on an empty stomach.  Did i mention i'm on steroids?  Others on steroids are well aware, it's hard to find a time of day when your stomach is empty.  Steroids are kind of like having a hungry, angry baby in your belly; and that baby wants you to eat all the time (preferably something containing milkfat).  If you don't, it will fill your veins with it's cranky baby quake.  God, i hate that baby. 

Things I have noticed since starting the new drug:

• I was loosing hair on chemo.  A lot of it.  One couldn't tell, because i have enough hair to make a hair shirt for each Catholic who thought about eating meat on Friday.  Now that i'm not on it anymore... it's like wearing a wool cap all the time. 
• I rarely have an empty stomach, so i have to set a timer to remind me when i do.  
• Grazing may be a problem.  Perhaps i need a hair shirt to remind me not to graze.
• I can easily be okay with most anything that's unsavory:  books not in alphabetical order, rainy days, taking handfuls of pills twice a day.  But, i have yet to be able to enjoy the chain of regimented times to do things.  Like, you can't do this if you've done this, this, and this.  Or, more specifically... I can't take my meds in the morning for another two hours because i accidentally licked my finger when making my daughter's peanut butter & strawberry toast.  (note: make hair shirt)
• Iced coffee is caffeinated just like real coffee.  Despite it's sweet, delicious, ice cream-like demeanor, it's a red hot devil with cubes at 6:30pm.
• Without my amazing friends and family... i would be even more of a hot mess than i am now. 

for those really stressful moments...

there's always two bulldogs in swings:

today's great things

filling red rubber clogs with cool water from the hose &
swish-squashing around the garden on a hot summer day

dirt stained hands

 

and this song...

time to make it work

Make It Work

I quit my job to take better care of myself. And so, to be sure i didn't make a glaring mistake, i kind of have to now.  Starting with an anti-inflammatory diet is my first step: which means cutting down on refined sugars, processed foods, and caffeine; and maybe the hardest step.  That's pretty much everything i abused in attempts to fuel my body to get through work each day.  I'm hoping these simple daily dietary changes will lower the inflammation throughout my body and help eliminate the need for some of the crazy drugs used to stave off the beastly blindness. 

Going on the fourth day without coffee, (read: four daily iced coffees the size of my noggin seasoned with enough half & half and simple syrup to make kidneys ache and diabetics quiver) is easier than it could have been.  My body was craving the much needed break.  Next week it's reintegrating yoga, time at the gym...  and, being grateful for the privilege to get to make it all happen... instead focusing on the tightness of my yoga pants which is obviously because of ill-washing.  Why else could they be so tight?  Certainly not from the elevated half & half, simple syrup, and steroid intake from past nine months?  Also on the agenda: being more honest with myself.

Thanks to my amazing family for helping me Make It Work (although they didn't get much of a choice), Tim Gunn for inspiring me to Make It Work, and to the local Y for being quite lovely for a Y, and making it all so darn accessible.

oh, boy!

new favorite website:

because sometimes Mr. Darcy is
a blacksmithing boxer

a shift in theme

Hi Friends,

So, many of you who know me personally know that i have a chronic inflammatory eye condition called Uveitis caused by an auto-immune disease called Sarcoidosis; and that i'm receiving chemotherapy to treat it.  Yesterday, after getting hooked up to the I.V. and scooting it around the office like a little future puppy on skates from one test to another for three hours, i was told that i was having a bad reaction to the medicine and the plug was pulled.

This is the fourth type of chemotherapy drug i've been on in a year, and one that has worked the best with little complications.  To have the plug suddenly pulled (albeit gently), was quite a disappointment.  I felt really alone in the moment; even though i was with the amazing infusion nurse, Laura, and a woman who travels from Spain to see the same doctor i drive to.   I guess i would have felt less alone, if the woman from Spain spoke English, or if i spoke Spanish, or if i wasn't so afraid of scaring her with the chubby tears that were welling up in my eyes.

Although i never intended to share my story in such a public forum, i'm doing it to share my experience: the ups, the downs, and the life that gets lived in between.  Because really... that's the best part, the "in between."  And though i've read a lot about treatments and a whole bunch more about the pain and suffering that can come with them, not much is said about the life that gets to be lived in between: the life worth living.  And me personally?  That's what i like to hear about. 

So, come back and visit.  If you know anyone that going through something similar, let them know that there are others out there and show them this.  Maybe if they know they're not alone they can have longer in between moments.  Because it's what all of us with auto-immune stuff want: longer moments in between the sucky ones.  Maybe knowing how someone else is finding those moments can make it easier figure out how to have them on your own.