My week at the War-Related Illness and Injury Study Center

At the top of my mind today: our hearts have been heavy with the recent disappearance of a dear friend, one of Callaghan’s longest-standing, closest friends here in the States. Over the last 20+ years, they’ve been co-workers, roommates, and motorcycle road trip partners, continuing to take trips together once or twice a year. The last time Davey came through here was in March, and I just hate writing all of this in the past tense. The wide-spread search for Davey was called off yesterday. Davey G. Johnson, wherever you are in the universe, we love you. Just wanted to put that out there.

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As promised, I’m here to fill you in on the medical experience that took me out of state for six days.

It all started when I took the Gulf War Registry Health Exam for Veterans. My results led to my experience volunteering myself to research efforts at the War-Related Illness and Injury Study Center (WRIISC) at the V.A. in Palo Alto, California. The Palo Alto V.A. has one of the three WRIISC programs in the country, the other two being in Washington D.C. and New Jersey.

I gladly accepted the WRIISC’s invitation to donate my time and DNA to this on-going research project. The study benefits combat veterans of Southwest Asia conflicts as the research is advanced through the center’s findings.

Let me just put in here that “Gulf War Illness” remains a controversial term. It broadly refers to a spectrum of symptoms that can also be described as “chronic multi-symptom illness” or “medically unexplained illnesses” related to combat service in the Gulf War, resultant of exposure to certain agents, fumes, and environmental hazards.

My experience at the WRIISC was fantastic. There were only two of us in this round of the study, and we received the best of care. He and I were flown out to Palo Alto and housed for the week at the Defenders Lodge.

 

Tired but grateful at the end of the last day of the study.

 

Those who take part in the WRIISC studies benefit personally, as well, as the other veteran and I learned. With our study results and notes documented in the system, specialists at our home V.A. hospitals will follow up on the WRIISC team’s recommendations with pinpointed exams and further testing that may lead to official diagnoses.

The other veteran and I both left with recommendations for further neuralpsychological evaluation… what I called “brain day” of the study mainly involved a mentally exhausting three-hour battery of tests. He and I struggle with similar cognitive difficulties, so we weren’t surprised that we tested out the same in that particular category.

In addition to a complete neuralpsychological work-up, it was also recommended that I undergo evaluation for Chronic Fatigue Syndrome (CFS), an illness that is apparently not uncommon amongst Gulf War veterans. For me, this would actually explain a lot.

Incidentally, I always thought it was strange that I’m tired most of the time, but I still work out with an abundance of energy in my body. I’ll often yawn before class begins and even during class between tracks in both Body Combat and Body Pump, yet when the music starts up, I’m instantly “ON.”

One of the WRIISC team members commented that soldiers are trained to power through fatigue, and many veterans never unlearn that conditioning in their bodies. When our minds recognize that it’s Go Time, we just GO, no matter how tired we are. What you see is a person with a lot of energy, because we do have a lot of energy when we’re in training mode. We have so much energy, we have some to spare after the workout is over! You can have a lot of energy while your mind is screaming “fight or flight,” even if you’re fatigued.

This might be the reason why I get my best workouts with instructors who deliver that drill-sergeant vibe. The more forceful the instructor’s commands, the better I respond. (This is more true for Body Pump, though… in Body Combat, I’m there to fight to the death no matter the instructor’s vibe.)

The underlying take-away for veterans with Gulf War Illness – for everyone, in fact – is that the mind/body connection is real.

It was wonderful to be able to volunteer and contribute to research helping other veterans with war-related illness and injuries. I never thought I’d give away my DNA for research purposes (or for any reason, for that matter), but I was happy to do it at the WRIISC. I’m grateful for the excellent care that I received, and for the light shed and answers obtained regarding my own health picture.

If you’re a Gulf War veteran experiencing health issues, I strongly recommend that you consider taking the Gulf War Registry Health Exam for Veterans.

 

 

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Medical travel blog in pics, part 2. (More selfies and food pics!)

You want selfies, I got you. You want food pics, I got you. You want to know where I am and what exactly’s going on, I don’t got you. Not yet, anyway. It’s not a big deal, but I just wasn’t sure whether I was allowed to mention it. It turns out that I can, so next week Tuesday… I got you.

Here’s the rest of this medical travel week, starting with Wednesday (yesterday):

 

About to leave my room for my morning appointments

A second day of hospital bathroom selfies. Imagine that!

I helped myself to this sleeveless hooded tank when Callaghan put it in his to-donate pile. Shopping your partner’s clothing cast-offs pays off sometimes. This tank is large, but it works well over a long-sleeve top.

Last night’s Door Dash delivery: bok choy with black mushrooms and soft tofu, brown rice, and miso soup with seaweed and tofu.

The “after.” I demolished all of the bok choy, seaweed, and tofu. I ate maybe three mushrooms, and I barely touched the rice or the broth. I was really just craving the greens. They were delicious. Do you, too, feel the life flowing back into your veins when you eat the greens you’re craving?

This right here is LIFE in a plastic spoon. This seaweed was SO GOOD. There was a lot of it, too.

 

Thursday (today):

 

This selfie was taken with a timer, and, well, you know my phenomenal camera and pic skills.

I did think of looking in the mirror while taking this shot, though. Today’s outfit was my standard uniform of jeans, boots, and t-shirt.

Tonight’s Door Dasher brought this fabulous Pad Thai with a side of brown rice. I asked for broccoli with the tofu, green onions, and crushed peanuts. There was no food left for an “after” pic.

I leave early tomorrow morning! My bedside table is set for Friday.

Last night showering in this huge bathroom.

And a last-minute selfie here in the lamplight.

 

In case you’re wondering, I had Door Dash bring dinner all week because while I sincerely tried to eat the hospital food, I just couldn’t do it. Moreover, the portions here are small compared to the volume of food I normally eat, so it wouldn’t have been enough even if I did want to eat it. I wasn’t the only one who sought food from other places! No one’s meals went to waste, though. We know we can eat from other peoples’ trays if they go unclaimed. I did forage through my tray every once in a while to see whether there was anything I wanted. One time, I found some broccoli. I scarfed it down inside of two minutes. It wasn’t bad. Broccoli is broccoli.

For lunches, I mostly ate protein bars, trail-mix-type foods, and fresh fruit bought from the canteen. There was the one day that I bought sushi from the canteen. It was surprisingly good! Sushi from a military canteen!

 

 

 

Medical travel blog in pics (aka a bunch of selfies and food pics.)

We’re taking this to a new level of silliness today, because there’s not much I can say regarding this medical/research trip. I’ve been taking pics along the way, instead. I’m afraid there’s no attempt at artistry going on here… this is literally a see-what-I’m-seeing sort of display that ended up being mostly food and selfies. You who enjoy the latter are going to love this post! It’s a rare selfie extravaganza. But let’s start in the bathroom at Sky Harbor International Airport and go from there. Haha!

Sunday:

 

(Jansport backpack with a Kipling monkey, in case you know your backpacks and you’re confused by this pic)

Benefit of having short legs: relative comfort in small aircraft economy seating

I’m almost never without a protein bar. I still had one in my bag after I ate this one. In fact, half of my suitcase was food.

Washed out next to the window in my room

These blooms smell divine!

Vegan pizza Margherita (delivery for the win)

The “after.”

 

Monday:

 

Literally dropping with fatigue after a long day at the hospital.

Got back to my room, flopped on the bed, threw my hand up to shield my eyes from the sun, and snapped this pic.

I did a little shopping at the hospital’s retail store.

This protein power snack mix is one of my new favorite things!!! I scarfed down most of the bag and had to restrain myself from eating the rest. I’d ordered food from Chipotle.

Chipotle burrito bowl: brown rice, sofritas (tofu), black beans, fresh tomato salsa, fajita veggies, romaine lettuce, and guacamole.

The “after.”

Jumbled assortment of toiletries and makeup before I organized them all again

 

Tuesday (today):

Getting ready to conquer my second day of hospital appointments

My once-a-year bathroom selfie

x2. Today was brain day, which required loose, comfy clothing.

Tonight’s Door Dash delivery: a falafel/hummus wrap. I ate the whole thing, so there were no remains to photograph.

 

Exciting, right??! [insert laughing/crying emoji here] Thursday’s post will contain more of the same. I plan to make it to the hospital’s little gym tomorrow afternoon, and that’s an environment I should be able to photograph! Pretty much the only pics I can take in the hospital, itself, are in the bathrooms.

 

 

Strategy: layering. Mood: determined. (Random updates!)

Next week already! Next week is the week I’ll be out of town for five days of medical testing and evaluation. I’ll bring my laptop, so I should still be able to post here on Tuesday and Thursday.

It’s going to be colder where I’m going, so I’ve been thinking about what to bring. I suck when it comes to packing, even if I check the weather forecast up until my departure date. Don’t you hate when you’re at the end of a trip and you’re left with a suitcase full of things that mostly haven’t been worn? I’ll pack clothes for layering. That should work.

I’ll have access to a gym, which means I’ll be packing gym shoes, as well.

Have no doubt that I’m looking forward to putting on those gym shoes during my trip! I’m going to lift weights on my own for the first time since starting Body Pump, so I’ll be able to find out how much weight I can lift when doing regular sets (rather than how much I can lift at a fast pace, as we do in Pump).

June mood: determined.

 

First of June mood.

 

It was almost midnight when this pic was taken a few days ago. I was wiped out. ALSO, if my bedroom walls look especially white in this black-and-white pic, that’s because they are! We’ve been painting. Room by room, the brown walls in our house are vanishing. It’s magic.

Summer is afoot; for me, it’ll begin once I get back from my trip. I’m going to dig into my writing. The digging-in will actually begin while I’m gone, as I’m considering my trip to be a sort of writer’s retreat.

Leaving spring behind: look for my “May Favorites” post this Thursday. Until then!

 

 

A note on mental health awareness month.

May is coming to a close, and with it, mental health awareness month. Are we all aware? On my part, I haven’t acknowledged the significance of the month in this space, though many of you have followed this blog because of my mental health posts.

For you who don’t experience clinical depression and can’t begin to understand it, here’s a scenario that might help:

You’re in the locker room at the gym when your ear catches a song on the radio. The song brings a sense of nostalgia so vague, it’s a mere tease. You can’t identify the song. It’s maddening. You listen hard to catch the lyrics, but the T.V. is on, too, and its volume is louder than the radio’s. You struggle to block out the sound of HGTV’s Fixer Upper so you can focus on the song. Shazam isn’t an option because the song is too faint; all the app is going to tell you is that it doesn’t recognize Fixer Upper’s Chip and Joanna Gaines. In a near-panic, you hear the song beginning its end, fading off in a flock of lyrics. You catch one expression – just one – which yields nothing on search engines. After long moments of failed attempts, you toss aside the useless expression. You’ve long since forgotten the song’s melody. Then you can’t even remember what it was about the song. Others try to help, begging you to describe the song so they can tell you what it is.

The song is soon irrelevant, anyway, because all you remember is the experience of wanting to know something and being unable to find the answer. It seems like much ado about nothing, except it isn’t… it isn’t about nothing. It’s about everything.

This is what depression can feel like: a fruitless search for an answer to an unknown question.

In the end, nothing matters. You’re compelled to give up because of this one mysterious, amorphous thing. It all feels meaningless, and the feeling is contagious to everything in your life and in your world. You begin the exhausting fight against the downward pull, which you can’t explain or describe, either. You’re left with the cliché of the abyss.

It’s a relief when a doctor figures out that there’s something awry in your brain. You start taking medication, and it helps. You sit and interact with professional listeners, and that helps, too.

Depression demands answers. It’s also hard for those who don’t experience it… it’s hard to be outside of it looking at someone who’s locked within. Those who chastise the depressed (just snap out of it, etc.) make themselves heard more than those who feel compassionate. The result? Stigma riding on the back of this medical condition.

Unfortunately, stigma speaks louder than compassion. This is why mental health awareness month is important. Compassion needs a louder voice. It needs to be attached to depression and other mental health conditions more firmly than stigma… and awareness can give it a chance.

 

 

A ghost eye is lost in plain sight. (Coraline.)

Imagine that you’re alone in the house when you suddenly hear a feminine voice. It says, “a ghost eye is lost in plain sight.”

This happened to me last week. I was in the kitchen, and the voice came from the living room. I recognized that silky voice, and I knew those strange words… I’d heard them several times before. The speaker was Beldam, the aptly named evil crone in the animated film Coraline.

“A ghost eye is lost in plain sight” is the second part of a line that begins with “In each of the three wonders I’ve made just for you.”  

I went to the living room as I remembered that I’d started yet another re-watching of Coraline two days previously, and that I’d paused it. How did it un-pause itself after two days? Not only was my laptop in sleep mode when “a ghost eye is lost in plain sight” floated into the kitchen, but it was shut… and when I woke up the computer, the Netflix tab wasn’t even displayed. I found myself looking at a different tab. Tell me that’s not creepy.

Computers behave inexplicably at times, so there’s no point to the question of how this could happen. There’s no answer. It’s just a weird glitch.

The incident kind of threw me, though, as I think it would anyone. When you’re alone in the house and you suddenly hear Beldam intoning “a ghost eye is lost in plain sight” from the other room, it gives you a bit of a start.

Coraline has to be one of the spookiest non-horror films I’ve seen. Candy for the horror junkie! It’s one of my favorites.

Apropos of nothing, here’s your sometimes-Tuesday selfie (in which I demonstrate slouching on the couch):

 

Sitting on the couch is one of my many skills.

 

I’m thinking I should finish watching Coraline soon so I can shut down that tab. If I shut it down and I hear “a ghost eye is lost in plain sight” coming from the sleeping, closed computer again, I’ll have to wonder.

 

 

Weathering. (A sort of fitness update)

I was going to post a fitness update tonight. Instead, I greet you with a weather report. I can’t help it. I sat down at my desk with the warm dusk wind blowing and our patio wind chimes loud in the best of ways, drifting through the open door. I’ll say it again: there’s something truly mystical about this desert, something incalculably powerful. Tonight I’ve been distracted by the wind animating the trees I can see from my office window… our two palo verdes, our date palm’s fronds, the mesquite across the street. I’ve lived in this desert for almost 30 years, and its magic still startles me.

There wasn’t much to report in fitness news, anyhow. Weight-training class (Body Pump): I increased more of my weights today, and that wasn’t even the plan! Kickboxing (Body Combat): it continues to be a different experience at my second gym, mainly due to the A/C and fan. Long over are my days of drowning in a pool of my own sweat as I drive home. Cardio (Step): I haven’t been going. Sunday morning workouts just aren’t fitting into my weekends, and that’s okay. I’ve been doing my 10-minute version of cardio every day here at home, so there’s no cardio deficit in my workout week.

Finding alternate ways to work out usually isn’t a problem. I’m thinking of the time years ago that I went to my then-boxing gym one evening to find it closing early for some reason I can’t remember. I remember what I did instead, though, and I remember it precisely because of the weather that night.

I drove east through a gathering storm so I could make the evening T’ai Chi forms class at the dojo where I occasionally trained. We did the Crane Chi Kung form, which was my favorite of the Chi Kung animal forms. It was a time during which I preferred Crane to the other animal forms, energetically speaking. Crane is powerful, graceful, and deadly. The Crane form’s expansive movements and deep stances felt good.

Wind actually echoed in the darkened sky as the temperature dropped, and hail began to hit as we practiced Crane. In the next hour, there would begin a heavy rain that would fall throughout the night and a few hours into daylight. There would be thunder and lightning.

It was all quite unusual. Later that night, I turned on the television to watch the weather report – this was during a more analog time – to see that it had actually snowed in Phoenix! It was March, and so rare that such a storm would visit Arizona in the spring, or even in the winter. We’re used to sub-tropical monsoon storms in the late summer.

It was March, and the icy edge of that storm sliced through the Valley like the edge of a crane’s wing through water.