good news...

So after eating better, cutting down on coffee, and taking better care of myself overall... the inflammation in my eyes has gotten better.  Seeing that, and how my body is reacting to chemotherapy, immune suppressants, and steroids; my doctor is taking me off of all of them.  This will be temporary, and the possibility of regular ocular steroid injections and anti-glaucoma drops are in my future... i'm absolutely thrilled.  The idea is to get my body strong and fit again.  

So right now, my diet is:

• As many veggies and fruits i can get into my body.  Summer makes that a joy.
• Lots of protein and whole grains... eating meat occasionally.
• Tons of water.
• Tea, not coffee (except on the weekends)
• A daily multi-vitamin, 2400 mg of folic acid and anti-inflammatory supplement Zyflamend

Once everything clears out of my system, I'm hoping to have  the energy to start working out and bike riding ASAP.  Here's to hoping it's all keeping the inflammation at bay.  I'll find out next week.  If not, nothing a little needle in the eye can't fix, right?  Anything besides chemo.

drink lots of water

kusmi tea makes coffee look cheap & undesirable

summer abundance

... and the perfect snack

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. 

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.