February 9, 2014 by Elizabeth Milo

Photo update because I don’t have the energy to write a word update and I’ve been snapping random pictures for the last month and thought I would share. :)

I’m still having a hard time finding the energy to write a post. I’m doing okay- it’s mostly because I am feverishly researching all the things my doctors want me to add to my arsenal (methylfolate, methylB12, carnitine, Zyrtec, Zantac, Cromolyn, Baclofen, Valium, Prednisone, Medibulk), as well as what I want to add (CoQ10, D-ribose, bread, cheese, Toblerones :-)).

So, my precious few computer hours are used up on research, emails, doctors, insurance, bills, and more research.

But, if you would so indulge me, I can post some photos of the things going on in my life (of course, with my fun anonymizing effects).

Visitors!

A visit from Baby A. and her Mama….

… my friend, Z.! (and that’s my “little” dog)
This photo was a BIG DEAL: I put on jeans and boots (my first flat pair of boots EVER) for the first time in 17 months. Literally. I have only worn leggings/yoga pants and Uggs/runners every day for 17 months.
Of course, as soon as Z. left, I went back to my PJs, but it’s the effort that counts!

A visit from my mother AND brother!
Yes, I am standing up and smiling and tolerating photos! Amazing.

Winter Wonderland!

A rare few inches of snow.

FOOD!

Egg challenge. It didn’t go so well.

Plantain crackers: click image for recipe.

Grass-fed organic lamb shepherd’s pie with cauliflower-sweet potato mash: click image for recipe.

Spice blends from Practical Paleo: click image for link to book.

An incredible batch of granola for Z. that I couldn’t taste because I’m not eating oats at the moment.

My husband makes me meals and freezes them, like this beef stew. ❤

Breakfast: butternut squash, asparagus and grass-fed beef hash, with a side of apple sauce.

A bit of craic, sure

Animals? 🙂

Anna’s hummingbird outside my window.

Bowie in the cemetery last month (I haven’t been able to leave the house in the last 5 weeks, but I hope to get a February cemetery visit in a few weeks)

The Seattle Seahawks won the Super Bowl! But Bowie was not a fan of the celebratory fireworks and backed himself into my lap in fear. 😦

Morning spooning.

February 1, 2014 by Elizabeth Milo

New In The Garden This Week

My Momma visiting from Ireland!

December 29, 2013 by Elizabeth Milo

Jingle Jangle

Whatever you did, it worked. Your thoughts, requests, and prayers lifted the beast a little and on December 27th, I was given just enough space to let in the laughter and joy. Pain eased up and, just like that, I was smiling all day long and excited for what 2014 might bring. It didn’t last much more than a day or two, but that was enough. So, to all of you that commented or liked or sent a bit of changing energy out into the universe, THANK YOU! I was given some relief, some perspective and hope for the future.

AND I managed half an hour outside:

Bowie in the Boneyard in December

Now. Ready? This is why I am going to get better. If you do nothing else today, watch the first five minutes of this video of Glen Hansard playing in Dublin this past summer. And then, if you only have five minutes more, fast forward to the 15-minute mark. I first saw them (The Frames) play in a pub when I was, I think, 17 and spent the next few years going to every gig I could. 23 years later, his music still fills me with an achy, wistful, electric desire to live this short life to the fullest. I will be back in Dublin one day.

Use good speakers. Turn it up- as much as you can tolerate. Dance with your kid -or your dog. Me? I just lie back, close my eyes and jingle jangle my feet a little. And smile. Happy Sunday. 🙂

December 24, 2013 by Elizabeth Milo

Calling All Angels

I’d give anything to have just enough life force to get out of bed and have a slow, quiet Christmas… eat a small, simple meal… listen to soft, festive music… have an easy, happy conversation… share genuine, memorable laughs… and watch my husband and sister open a few presents without my vision disappearing, my head exploding, my muscles collapsing, my speech slurring, my ears ringing, my brain swimming, my balance shifting…

This holiday season, please send some good thoughts out into the universe for those struck down by sickness… some healing vibes… some positive energy… some prayers for better days…

That’s all I want for Christmas. A massive outpouring of intention, electricity, hope, empathy. A showing of human solidarity so strong that the cosmos crackles with shared intensity… the dynamo hum of a hundred whispered desires – a potency so overwhelming that there is a subtle shift in the atmosphere… atoms vibrating and realigning… Until this huge chronic weight lifts ever so slightly and lets in some spaciousness, joy, and fortitude.

When I feel it, I’ll know it was you and I’ll reflect that energy back into the sky and pray that, maybe for a moment, everyone’s burden eased a little.

Happy/ Merry Christmas to you all. I miss you and think about all my friends, family and blog family daily. X

Calling all angels,
walk me through this one,
don’t leave me alone.

November 24, 2013 by Elizabeth Milo

My So-Called Life

The following is a glimpse into some of the ways my life has changed since ME became my constant companion.

Vitamins, supplements and electrolytes, oh my! The only supplement that passed my lips pre-ME was an Emergen-C every once in a while. Now this. I just started taking B vitamins again after a 3-month pill hiatus. Every once in a while, I just need to get “clean”.

My drug stash. I hoard them, but don’t take them. Call it preparedness or call it paranoia, I don’t mind. After winding up in the emergency room a dozen times, I like the security of having meds on hand. What if there’s an earthquake and we need immediate painkillers? Nuff said.

This is an example of how I test drugs. That dot in my palm is 1/8 of a Xanax…which had no effect but a hive on my throat…which means I probably won’t try it again.

Cramps, spasms, aches, sprains. I never knew you could have muscle pain like this. After bartending three 12-hour shifts in a row or after being on my feet for 15 hours during a restaurant opening, I never came close to the un-ignorable myalgia that exists in this disease.

Yes, all these clothes are clean and, yes, they have been in this pile for a month. Folding involves a lot of arm action and I’m not willing to give up, say, loving on my dogs because I used up my arm movement quota to get neat clothes.

Thank god we (he) built the walk-in shower when we first moved into this house. It makes it easy to wash 110-pound dogs and it gives a flat surface for a chair for me to sit on. Yes, this is a crappy metal folding chair ~ I ordered the fancy shower stool and it was large, cumbersome and unstable. I toppled off it within two minutes and I’m only wee; I can’t imagine a bigger person having to use one of those things.

I took this picture in August. These are my “sun slippers” ~ because, even when it is so hot out that I have to lie in the shade with minimal clothes on, the ice blocks at the end of my legs need to be covered and in the sun.

Shocking, isn’t it? Welcome to peaceful sleep. Zeo headband, amber-lensed glasses for blocking the blue light in my phone, cpap nasal mask and tape over my mouth. Haha! No wonder I’m exhausted. 😉

Bedroom in the siting room. My husband moved to the basement room last year because he kept waking me up at night, but, this summer our bedroom got too hot for my sensitive system, so we swapped and I went to the basement. But, every teensy squeak of the floor boards above would wake me (and I don’t go back to sleep), so my husband moved to the living room where I couldn’t hear him. Poor guy.

BUT, the basement bedroom has no window shades and even the light from the moon wakes me, so, as a temporary measure, we (he) covered the windows with tin foil. My own sensory-deprivation chamber. Luckily, we don’t have many guests. 🙂

My crazy numbers: High heart rate because I dared to carry some stuff upstairs and low blood sugar because I dared to eat breakfast (I have reactive hypoglycemia).

What my hair used to look like a few years ago and what it looks like now ~ lank, brown, going grey, unwashed, and always in a ponytail. I miss feeling pretty!

My crazy skin. This makes me look so gnarly! My only constant skin issue is acne (which has been worse than ever since I came off the birth control pill 11 months ago), but, every once in a while, my autoimmune urticaria, sensitivities and rashes rear their ugly heads.

Blood pooling. *No filters were used in the making of these pictures (although they were taken at different times of day and in different seasons). Thanks to Jackie at LethargicSmiles for the blood pooling photo inspiration.

Jobst Relief, Thigh CT, Small, Beige
Some of the products I’ve purchased in the last year to try to help my IBS, my ANS, my allergies and my insomnia. I really miss the days when I didn’t read the ingredients of mouthwash!