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Archive for December, 2016

… a little relief.

But allow me to back up a bit, to the night before Christmas.

3:30 PM my phone alarm goes off to tell me to take my first pill.
19 minutes later I head to the kitchen for my second medicine…
…which gets held in my mouth for 1 minute before swallowing.
20 minutes later is my third medicine.
10 minutes later my fourth.
and 15 minutes later I need to start eating.

I’d been feeling decent that day so managed to do a quick cleaning of my room and finally set about my Christmas decorations. Between time, energy and emotionally needing to just do a little something different and meaningful this year, I didn’t do my full, normal decorations.

No moving my salt lamp and setting up my little tea-themed tree with lighted tea house and all its surrounding decor. Just the window garland on top of my desk instead with my little black stocking hung and one little white teapot and one little white teacup and saucer (both ornaments, neither actually hanging) all framing and beckoning the eye to the focal point—a Christmas plate emblazoned with the word “Hope”.

Then after my salt cave session I was feeling better again so I managed to get Mom’s gifts from Dad boxed and wrapped—in between pausing to take medicines. I got changed for church in-between bites of soup. And then took my final medicine 3 minutes after I finished eating and drinking and 3 minutes before I could drink again (or, actually, pop in a mint on the way to church)…

I had to eat early because we went to the 5:30 Christmas Eve service.

I put my nose filters in and wore my face mask and had a spare with me as well. Just in case. (Though it’s really hard to breathe when I double up like that…)

We had barely entered the sanctuary doors when the scents hit and overwhelmed. After all, folks dress up on Christmas Eve and, apparently, they all want to smell nice as well. Trouble is, when you get 350 people “smelling nice” together, it’s not so nice.

At first I was going to attempt sitting in the front pew with Mom and we went in and she immediately began chatting with someone she hadn’t seen for awhile and I immediately realized I wouldn’t be able to stay. But the pastor approached and so I smiled and shook his hand and tried to speak a bit… but I was quickly losing my ability to breathe and the dizziness was starting and so I told Mom I had to go and tried to make my way quickly back through the sanctuary to the Welcome Center where more breathable space and nice chairs awaited.

Except the further I got into the sanctuary the more overwhelming the scents became and the wooziness kicked up and I tried holding my breath and moving faster but with all the crowds I couldn’t. I found myself avoiding eye contact and my lungs burning but I still didn’t want to breath in the fumes that I knew would make me worse… I prayed and tried not to panic and finally broke through the crowd and the line of folks entering (through the main doors at the back of the church) and collapsed into a chair in the Welcome Center breathing deep and calm.

I sat there, watching all the folks pour in and knowing I’d be there alone for worship on Christmas Eve.

How would I light my candle? Who would I pass it on to?

I pulled out my bulletin and glanced through the order of service, curious and eager to see what our story would be this year…

Max Lucado’s The Crippled Lamb.

My eyes filled with tears.

I sat there with nose filters in and face mask on staring through the windows and glass that separate the Welcome Center from the sanctuary. And I pondered the separation. How my body prevents me from being in among them, present in there, worshipping with them, sharing the light as it’s passed… I can see it, but there must be all this stuff between them and me (and between them and my mouth/nose).

And that’s when it occurred to me. That there Christmas Eve we were celebrating the birth of the Christ-child. Immanuel. God with us. The One who was foretold. The One who touched the untouchable and loved the unlovable. The One who came to save and would tear the veil.

The veil that separates.

No more separation between us and God.
And, because of that, no more impenetrable walls between each other, as well.

And I took encouragement in the fact that there will be a day when the rest of the veils will tear, the rest of the walls will fall and I will again be able to worship with and among the people of God with no filters, no masks, no curtains or glass window panes between us.

And then I saw Mom walking into the Welcome Center.
She came to sit with me through the service. So I wasn’t alone.

And our ushering friend didn’t neglect us back there when it was time to pass out the bread, or the grape juice, or light the candles.

And there was beauty and grace.


After service Mom and Dad dropped me off at home and then they headed down for the annual Christmas Eve gathering with family on Mom’s side. I opted out this year for a few reasons.

First of all, being a highly sensitive introvert, I am easily overwhelmed and exhausted by commotion (lights, sounds, smells, movement) and people. This is true even if the commotion source and people are dearly loved. This is exacerbated by my fibromyalgia which also adds in pain and achy-ness when I’m overloaded. This is even further exacerbated by my newfound and still increasing scent/chemical sensitivities which also add dizziness, nausea and headaches (likely a vestibular migraine) to the mix. And if that’s not enough, my current struggles with Lyme and how the treatment demands so much of my body and has me worn just exacerbate all these problems further.

So after a rough week, a full energy-expending day and the scent and sensory overload of Christmas Eve service, going to an allergen-filled home with crowded small rooms with multiple conversations where I’d have to have at least one face mask on and the majority of the (older) folks there wouldn’t be able to hear me speak anyhow, well, this year it wasn’t worth it.

Some years it is.
Some years it is worth facing all that to spend time with family.

But this year with everything going on with my body, it just made sense to stay home.

Choices.
We all have them.

Big and small.
Less consequential and weighty.
If this, then this…
If this, then not this…
Risk and results…

I am more keenly aware of choices these days and how the littlest ones have more consequences for me in this state.


The bonus was that staying home allowed me to decompress.

Unwind.
Alone.
Control of lights.
Control of sounds.

And prepare a little more for Christmas Day.

Stockings were stuffed.

My “mess” in the spare room that my body hadn’t allowed me to get to hitherto was finally cleaned up and the room was cleared to use for our family photos the next night.

Of course, that took longer than I’d hoped and I still got to bed later than I’d wanted.

But having the room for family photos was important to me.

Choices.
Consequences.


Because Christmas fell on a Sunday this year and there was no desire to miss worship, I rose early on Christmas morning.

The medicine schedule is the same at breakfast as it is at dinner.
Except in the morning it’s somehow easier.
It’s been woven into my routine.

Even when my schedule needs adjusted for off-routine days like Christmas where I put my pjs back on after my shower and save the getting dressed part until after gift opening.

Because my morning routine is…. well, routine enough and timed enough to slot parts of it in amongst my medicines. Stretching. Sinus rinse. Teeth brushing. Preparing breakfast.

The plan was to start around 7 AM with gift opening and we did. Mom and Dad with their coffee. Me with my cup of tea and a full belly. Instrumental Christmas music playing softly in the background. Snapping photos. Laughter and surprise.

It was pleasant.
Un-rushed.

And definitely a little sadder (and less complicated) without Cali here to get into the paper and bows and no stopping to introduce her to her new Christmas toys or pausing to play with her with our ribbons…

Then it was dressed and ready and off to our 9:30 worship service.

I didn’t notice at the time my unusual lack of pain…


I was a bit surprised walking into the sanctuary on Christmas morning that it was just as scented and overwhelming as the evening before. Perhaps some of the scent had lingered from the previous night (it does that, you know, even though very few ever notice)… or perhaps folks were just still fragrantly celebrating the holiday.

So I sat back in the Welcome Center again.

This time Dad wasn’t up with the choir, so Mom stayed with him in the sanctuary.
But at this point I’m fairly used to regular Sunday morning worship back there alone.

Well, alone after the sometimes-scented ushers leave.

And that’s okay.

But the scents and commotion and people encountered in that just-over-an-hour had made a steep withdraw from my reserves for the day…


I wanted to rest when I got home.
I knew my body needed it.

But there was tea to make for Christmas dinner.

And Mom and I still had much to do to prep the dining room and the “photo booth room” for our Gossert family gathering that evening.

So 90-some too-full minutes after getting home from church, we were off to my aunt and uncle’s for Christmas dinner and gift exchange.

I did wear my nose filters to help with any allergens from their cat or any stray smells that lingered. But no mask was needed. It was the most calm, least overwhelming part of the day.

Plus my aunt had lovingly left out any black pepper from the food she made so I could choose from any dish on the beautiful spread.

Grace.

But I was still quickly draining and after a few hours I was more than ready to head back home.

The car ride was nice.


Once home we all kept moving. Final preparations for when my siblings and their families would arrive that evening. Final touches to the photo booth (plus a test run), added leaf to the table, random “gifts” bagged for our White Elephant exchange, foods prepped to set out…

And since we never know exactly when everyone will get there, I had to figure out when to take my meds.

I started early.
And it was a good thing.

Because it was time to eat before anyone arrived and so I just made a plate for myself and sat down in the living room (where Mom was also finally relaxing—Stage 4 lung cancer, even when doing well on trial meds, can also leave you exhausted) and ate.

And you can’t eat in a face mask…

I’m not even sure when folks started arriving.
Or when I noticed it.

But somewhere along the way someone had not gotten the message or had forgotten or simply hadn’t realized what they were doing and… well, let’s just say some folks were scented.

Aside from one I noticed who flagrantly exuded fragrance, I never did pinpoint all the culprits. You know, it’s sorta awkward to go around sniffing people. And besides, I didn’t want to make anyone stand out or feel bad.

I managed to take most of the family photos in the “photo booth” and at least greet most of the family who was able to be here this year.

But it wasn’t too long until the nose filters, personal air purifier and even double face masks just weren’t enough.

I was getting woozy and nauseous and my head was starting to thump and I could even feel my ears closing up.

So I retreated to my room where I had stashed some peppermint seltzer, extra water and trail mix (the latter of which was never needed).

One thing you learn in a body like mine is to always have back-ups.
(Makes packing or going places ridiculously complicated, but…)

So I wedged my tripod against the top part of my door to keep it firmly closed and turned on the new humidifier/diffuser my aunt and uncle had just given me for Christmas and added the wonderfully not-just-tolerated-but-helpful pure essential oils of lavender and frankincense. And I put on soft instrumental Christmas music. And I leaned back in the bentwood rocker that had replaced my “desk chair” (which is actually a spare dining room chair then in use for our large Christmas gathering) and I breathed deep.

And I meandered through Facebook.
And I did my devotions.
And I watched the Doctor Who Christmas special.

And Mom came in to see how I was doing.
And I did exit my room (double-masked) to take photo-booth photos of some late arrivals.

And I did try twice to go back out among the family (or remaining family at the second point)—hoping that my time away had calmed my body enough. Nope. Every time I exited the room the symptoms began to worsen again within minutes.

But I didn’t cry.

I told Mom that.

I thought leading up to that night that if I “got stuck” in my room that I’d cry.
(It’s happened before with company. *shudder*)
Hence my messages and reminders to family about my scent issues.

But Christmas night I was okay.

And that was a grace.
Huge, beautiful grace.

I was a little disappointed, of course. And felt bad for my siblings who did make huge efforts to not be scented (even to the point of not wearing deodorant which made them uncomfortable)! After all, they had done what was right and still didn’t get to see me much because of others.

I’m discovering life is like that.
A lot.

But I didn’t get upset or depressed.

And I realized amongst all the crazy scent-symptoms and exhaustion that my day—and even then in the evening hours when my special pain meds usually wear off—that I wasn’t really having pain.

For the first in days.

Grace again.


I didn’t think I’d still be up when everyone left, but I was. And even exhausted and woozy, I donned my face mask (because, again, scents linger for hours even after folks leave) and tried to help a little with clean up but also made sure I did important things for my body like washing my face, brushing my teeth and—most essential in such circumstances—doing my sinus rinse.

So it was midnight again until we were in bed.

And all alarms were turned off for Monday.

I woke around 9.
I turned on the “clean air” EO diffuser at the family room/dining room split right away.

I was thankful I didn’t need my mask in the main part of the house.

Medicine. Essentials. Breakfast.

Then I crashed for a nap from around 11 until just after 2.

Up for lunch meds (way less complicated!) and a light late lunch/snack of leftovers.

Then watched my new Muppet Christmas Carol DVD.
And sorted my meds for the week (usually a Sunday task).
And just chilled on the couch with Mom and the TV.

(Well, plus dinner medicine routine and some comforting soup!)

I was exhausted.
My pain was back up… and even more so.
My stomach was off.
My head was woozy and a bit achy.
My sinuses were congested.
I was sneezy.
My ears were full and painful.

It was a reaction to all the scents, allergens and commotion of the previous day and a half.

My body had gone well past the limit.
And now it was crashing.

I was grateful to recognize what was happening.
So I didn’t get alarmed.
So I could monitor my moodiness (and not push and lash out).
So I could simply rest and do good things for my body.

Like humidifier and essential oils and sleep and sinus rinse and soup.
And get an emu rub from Mom before bed.
And not neglect some bedtime pain pills.


I did set my alarm for today.

And I woke up and my body was functioning again.
At least at the average level it has been.

And as soon as Mom got up I had her help me put my shielding lotion on my back (the one place I couldn’t reach myself) so that I was fully covered and able to try on the new clothes I’d been given for Christmas.

Because, yeah, I get itchy-burny and rash-y if unwashed new clothes—laden with all sorts of chemicals!—touch my skin.

The shielding lotion helps.
Mostly.
At least for the amount of time to try something on quickly.

And the struggle is real.
And the days are long and hard and I am worn.
And the choices are complicated.
And it’s easy to feel like there’s no winning.

But this is my life.
For now.

And still there is grace.

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Habits and Choices

Back in July when I felt so threadbare, a beautiful thought occurred to me that perhaps hope is a habit.

In some ways that connection has helped to sustain me these hard, dark weeks and months as treatments fail and work and don’t hold and the process begins again…

And still every night I set my exercise clothes out for the next morning.
More often than not knowing very well they won’t get used.

But if hope is a habit, then I haven’t given up all hope…

Just a few nights ago, as I lifted the “DANCE”-banded capris, Tigger tank and black ballet slippers from their bin and placed them habitually on the third shelf of my tall bookcase—the one that houses books such as Ordering Your Private World, Six Hours One Friday, Finding God Where You Least Expect Him and our old United Brethren Hymnal—knowing beyond a doubt in my dizziness that it would be unlikely at best that I’d actually put them on the next morning, I managed a weak smile at my habitual while unfelt hope.

And then a snarky, cynical little voice in my head chided, It’s not a habit of hope! You only set them out because they’re on top and you need your pjs from underneath.

The voice, espousing fairly solid logic, was correct.

The outfit I use on good mornings to do my stretches and dance-like-movement lives on top of my pjs in a bin-of-sorts on a shelf in my closet. For both are items that get used several times before washing and, therefore, spend their days apart from the clean clothes in drawers and on other shelves. To access my pajamas I have to remove my exercise clothes from the bin first.

But, another equally logical yet kinder inner voice piped up, you wouldn’t have to…

This voice wasn’t just more optimistic, it was—somehow—truer. Bypassing the surface logic, it saw further and responded with another correct statement that, because it was rooted deeper, held more truth, more power, more sway.

After all, other possibilities did exist. It wouldn’t be hard to yank my pjs out from under the exercise clothes at night and toss them in on top the next morning… though with my preference for neatness and order it would be more likely that one frustrated morning I’d put my exercise clothes out-of-sight, out-of-mind before adding my pjs on top… or perhaps one night I’d lift up my exercise clothes and groan in despair and put them back in—on the bottom—after retrieving my pjs and then collapse dolefully into bed…

Regardless of which of these plentiful possibilities it would be, the result would be the same—my exercise clothes would forever be relegated to a new position.

On the bottom.

Only seeing the light of day when I actually needed them—or thought I really might.

Which is to say, almost never.

But I don’t do that.

I choose not to do that.

Somewhere along the way in my being-me-ness and organizing my nights and days, I chose to order my clothes and retrieve them and put them away in this way.

And habits don’t stick if we don’t somehow make little choices—consciously or subconsciously—along the way to continue doing so.

You’ve made conscious choices to continue doing this over the years.

The kinder, truer voice was right again.

Because there have been times when I did stop to think about what I was doing.
Why I kept putting out my exercise clothes.

And maybe in all those “almost” moments I didn’t actually realize the full depths of the hope-habit I had created, but I still chose to keep up the habit.

I chose to keep doing it.
I am choosing to keep doing it.
I will continue to choose to keep doing it.

I think that often hope is a habit.
Yet a habit is built on choices.
And choices aren’t just once-for-all.

They are renewed, remade again and again.

Sometimes daily.
Sometimes hourly.

And the more I think on it, the more I realize it applies to more than just hope found in habitually setting out exercise clothes…

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