School's Out For Summer

I posted a status on Facebook about how Kevin, on his first day of summer vacation, brought me breakfast in bed. He always promises that this type of doting behavior (along with flowers every week or two) isn't because we are newlyweds and will continue throughout our lives. Here's hoping, because I feel so lucky to be spoiled and pampered. Let me tell you, it's not bad being treated like a queen.

After that lounging start, we went to work. It was a very physical day for me -- much more than I normally would ever pack into one day. Call it end of spring cleaning. 

Tuesday night we bought a new-to-us bookshelf off Craiglist, from a guy in Fairfax. We already have two bookshelves that are about 8 and 9 feet respectively and one in the 4 foot range. We turned a skinny 4-footer into a DVD shelf. The remaining three were not even close to enough room for the book collection of a couple who met working for their college newspaper. We are book nerds, plain and simple. And we can't even merge our collections because we have different ways of organizing our books. Kevin does what probably every normal person does (or would do if they read) and alphabetizes by author. I would, except I can't. I'm serious, with my "memory" or lack thereof I can't! I'd never find anything because I don't know who wrote it, unless it's Stephen King. So I clump my books in sections based on topics (a much broader thing to remember than a person's name!). I have sections on poetry, sports, animals (subsections: dog fiction, pit bulls, and sharks), philosophy, vampires, Stephen King, Harry Potter, Chicken Soup for the ______ Soul, mafia, religion/spirituality (subsections: new age, Christianity, and Wicca), college books I found interesting enough not to sell back, etc...

While Kevin reorganized our bookshelves and vacuumed the house, I gave our 4 bathrooms a thorough, deep scrub clean (top to bottom, every nook and cranny). Four bathrooms sounds awesome when you're shopping for a home. It is not awesome when you have to clean all of them. Halfway through cleaning the bathrooms, I took a "break" to organize our office with Kevin. Over the last two months we haven't ever put anything away in the office. We've just put office-type stuff into unassigned piles. Afterward, we went on our daily family walk, which is Blaze's long walk of the day. 

When all was done except the half bathrooms, we made ourselves a lovely dinner that happened to also require a lot of work. We had grilled kabobs: chicken, grape tomatoes, and both green and red peppers with a side of corn on the cob. Kevin cut the chicken; I mixed together a marinade for the chicken: a blend of teriyaki sauce, EVOO, egg, poultry seasoning, and lemon pepper. Kevin chopped veggies and shucked corn; I cleaned the main level half-bath. We skewered together.

We ceremoniously started our brand new grill (thanks to my in-laws!) together. Our grill is charcoal, because I'm old school and had no interest in a new, schmancy propane operated machine. Kevin's used to boiling corn and a more modern style of grilling, so when it came time to cook, I (wo)manned the grill. And while the coals were burning I cleaned the basement bathroom. 

We sat down to dinner at our brand new patio furniture (courtesy of Kevin spoiling me with stuff for the house). Dinner was fantastic. We considered our first new-grill meal a huge success, and we're very happy that grilling burgers is on our menu for next week. For his part, Blaze probably ate an entire pepper's worth of veggies, because we made way too much.  

In other backyard news, I've grown lush new grass (which is ironic because I have killed my one houseplant). We had a patch that was overrun with rocks and weeds, except for a few poorly maintained rose bushes. About 2-3 weeks ago, I poisoned and ripped out the weeds and raked the area until I got fresh dirt and sprayed out grass seed. With all the rain we've been getting it has flourished. Mommy made great grass for Blaze!

In healing news..... No, I'm still not getting any better, but my henna-like tattoo is all healed up. And quite pretty, if I may brag about my ink ;)

One more piece of healing! My scar, from the March surgery. My physical therapists always comment on how well it has healed. Nothing else is healing, so at least there is that!

PT in one hour! And pain doc, maybe resuming injections, tomorrow! Updates likely to follow....

Posters, Making Every Moment Count, and Caged Lions

I stare at this word-photo everyday. It hangs on the wall next to the right arm of the couch. To anyone who might come in our home, it's in a very tucked away corner. For me it's direct line of vision, 12 o'clock.


"Life.
Find a passion and pursue it.
Fall in love. Dream big.
Drink wine, eat great food and spend quality time with good friends. Laugh everyday.
Believe in magic. Tell stories.
Reminisce about the good old days but look with optimism to the future. Travel often.
Learn more. Be creative.
Spend time with people you admire.
Seize opportunities when they reveal themselves.
Love with all your heart.
Never give up. Do what you love.
Be true to who you are.
Make time to enjoy the simple things in life.
Spend time with family. Forgive even when it's hard.
Smile often. Be grateful.
Be the change you wish to see in the world.
Follow your dreams.
Try new things. Work hard.
Don't count the minutes, count the laughs.
Embrace change. Trust in yourself.
Be thankful. Be nice to everyone.
Be happy. Live for today.
And above all...
Make every moment count."

When I bought it, I thought, Sure some of these aphorisms seem trite, but I love it. It really is the way to live. I only thought about taking a sharpie through "drink wine," but everything else was dead on.

As you can see in the picture, some of the font is bigger than others, or bolder. But still I know this sign so well, that's not necessarily where my mind goes. If I'm doing well I see so much beauty, positivity, and great advice. I think, Hey, I can do that. I can be nice to everyone and be thankful and be creative. I can smile, laugh, reminisce, love, dream, trust, etc...

But this morning.... This morning I was not doing well. All I could think was I spend EVERY SINGLE DAY on this couch staring at this effing poster that says "AND ABOVE ALL MAKE EVERY MOMENT COUNT." Are you SERIOUS? Why in the Hell did I hang that poster there?

And then there were tears. And there was internal beating myself up. You're pathetic, I told myself verbally and internally. You don't make moments count. You're trapped in a body that can't do the things that define you and you're cursed with knowing exactly that; you're cursed with a disease that steals your body, but not your brain.

I AM NOT PATHETIC. I know that will be today's positive affirmation. But I also know it's true that I am stuck in a body that betrays me, while my mind stays sharp. Living with CFIDS for so long, that has always been my greatest fear. That one day I would be crippled by it, in such a way I spent all my days in bed, watching life and the world go by me. Oddly enough, it's more the TOS that has caused this. I never saw that coming.

CFIDS, in total, has caused me to spend nearly 3 years combined total disabled, stuck in bed. So I am familiar with this type of torture. And I've always told people, whether they believe it or not, that's a fate worse than death.

A few hours ago I was a leaky sobby mess, but I already have my fight back. I don't know how, but I'm going to find a way to get out of this trap. It's like wild animals that are captured and caged. In the movie XXX, staring Vin Disel and Samuel Jackson, Jackson's character says,
"You ever watch lions at the zoo? You can always tell which ones were captured in the wild by the look in their eyes. The wild cat. She remembers running across the plain, the thrill of the hunt. Four hundred pounds of killing fury, locked in a box. But after a while, their eyes start to glaze over, and you can tell their soul has died. The same thing happens to a man."
Jackson's character is referring to prison, but it's the SAME for people like me.

Love & The Little Things That Make My Days Bright

I meant to post this on Mother's Day, but ya know.... us sick kids aren't always timely with our plans. Plus the meds make us forget stuff. For those of you that don't know me very well, this girl is someone who I have mentored for the last two years and consider her my half-daughter. She often calls me Mommy, and during season I coaches her, she leaves me little love letters in my coaching book. I haven't been able to see her recently, but she'll always be my girl.

The happy Mother's Day text came in on Sunday night. My reply was in the morning. And calling me "Stanley" wasn't a typo, it's one of her weirdly affectionate things.

What is your morning routine?

My husband's morning ritual starts out very similar to yours, I imagine. His alarm clock goes off waaaay too early (6am) and he stumbles out of bed. He showers, brushes his teeth, and gets dressed for the work day.

By the time he gets to me, he's just about ready to go. But his hardest tasks are still ahead of him. He has to wake me from a medicine induced sleep, something that is very different than simple, normal sleep. And I've never been a morning person anyway.

5 minutes later (I think) he helps me get dressed. We've laid the clothes out the night before because I'm too groggy to think in the morning. My clothing has to be comfortable and loose or wide fitting on the neck. My scar still hurts too much for the pressure of clothing.

I pee then brush my teeth; simultaneously he takes my purse, meds, and back o' junk/stuff to do downstairs. When I step out of the bathroom he is sitting, waiting on the bed. He leads me downstairs. I fall a lot, so I rarely walk up or down stairs alone anymore. I fall A LOT. Even on solid ground, not just stairs. It's awful.

I take my first set of pills at 6:30 (and every 2 hours after for the rest of the day). Kevin makes us both coffee (some days before I come down, some days after) and brings me an ice pack. He tucks me into "bed" on the couch. I get goodbye kisses and almost always a forehead kiss. Those are my absolute favorite. His forehead kisses make me feel safer than most anything. I thank him for all that he does and he leaves for work. I know within an hour, after he gets settled in at work, I will get a text from him, telling me he loves me.

On the coffee table are two Nutri-Grain bars (already opened to save my dead arm the trouble) my pills, my water, my coffee mug, my reading material, and my to-do list. I am in and out of sleep for the next few hours. I have alarms on my phone going off every two hours, and I have phone calls or texts, from Kevin, alerting me so I don't miss my medication. For some reason I don't have alarms set in the afternoon. By then I'm usually reliably awake. But if he doesn't tell me it's time to take my pill, I often forget.

He rarely shows frustration with my health problems/our life struggles. I often do. I cry almost every morning once he walks out the door. Between the meds and the tears I fall asleep quickly. I try to be strong for him, because he is so strong for me. I am exhausted from the physical battles, the emotional battles, the spiritual battles.

I am ashamed of my current way of life; though I know it's not my fault I've fallen ill I'm still ashamed of it. I feel I am grieving the loss of the person I know of as myself. She no longer exists, in the physical world. Only in our hearts and mind. I miss her. I'm still figuring out who I am now, and it isn't easy to do. I suffer from a loss of dignity in the things I can't do or need help with, but that list is a whole other post--literally, already saved in drafts!

Speaking of, I actually have several blog posts saved in drafts, almost ready to go. This was one of them. Some of the posts to come:

• things I'm unable to do at all, things I'm unable to do without assistance, and things I've lost
• my official diagnoses (health terminology and good old normal human speak)
• and other personal "us" things that keep Kevin & I going

As I mentioned, most of this entry was already saved in a draft, but I decided it was time to post this one because of a blog post I just read What Says Love In Your Marriage? and THIS is it. This morning routine that is so good for me, and so giving of Kevin SCREAMS love to me. 

I've felt guilty for the added burden in the morning. I mentioned that to him last night and his reply shocked me. He told me he likes this new routine. Even though it's a little more work, he gets to start his day talking to me, rather than just kissing an unconscious blob goodbye (our previous morning routine). I'm in awe of his positive outlook and deep love for me. I often feel I don't deserve it, but I sure am grateful for it.