Lessons From This Flare

Chronic illness comes with random “rewards” and things you don’t really think of. There’s lots of bits and bobs that you don’t imagine, that become a really big part of your life, when being sick becomes the biggest part of your life. Here’s a few silly little bits that I’ve noticed in the last few days.

“Random” Increases in the Credit Card Bill - During a Flare

When I have a pain flare, that crashes me in bed, or on the couch, I live in the world vicariously through Amazon, Anthropologie and Ulta (primarily, but not exclusively, of course). In other words, I imagine what I would wear, how I would wear my makeup, what fancy soap I might wash with, if I showered, and what I might read or do, if I moved more than a centimeter. I don’t actually use any of these items for weeks beyond the flare, but I damn well buy them, in anticipation.  

Most recently, I bought this thing. It’s a bit out of my comfort zone, but I’ve wanted to dare a wrap/kimono/poncho-type sweater thing for a while. I’ve given up on the idea that I’m too short, or too anything to wear clothes I’ve longed to wear. I’ve been watching the sales for one, and poof, finally hit a good one, at the right time. You always know you are getting something good when the model looks ambivalent, or even annoyed to be wearing the product. Bryon loves my sales-watching. It got me a $499 coat this year for Christmas for less than $150. I wouldn’t be able to dress the way I do without hawk-eyed sale-watching. The Anthropologie sale rack and I are very well-acquainted.

Photo is a screenshot courtesy of Antrho. Obviously, I didn't take that. I won't be that tall. But, i can wear boots like that. And, I can un-comb my hair.

Photo is a screenshot courtesy of Antrho. Obviously, I didn't take that. I won't be that tall. But, i can wear boots like that. And, I can un-comb my hair.

Thank goodness for a husband who tolerates my habit of pretending to be normal when I’m sick, and therefore spending very non-pretend money on presents for myself. When I’m not in a flare, I spend like a normal person; actually, I spend less, so it averages out.  They should make a rewards card that doubles points when you spend insane amounts, all at once, and then zero amounts later. In other words, I want rewards for being me, because I’m special. I’m a snowflake, dammit.

I was looking for a cute picture of a snowflake, and the Google machine gave me this. I couldn't resist.

I was looking for a cute picture of a snowflake, and the Google machine gave me this. I couldn't resist.

I guess I’ll have to make do with the Ulta rewards I’ve earned, so far, this year. I’m saving it for my next flare, so I can go bananas on randomly colored eye-liner that I’m only just getting brave enough to wear beyond the boundaries of my hallway.

The Appointment Line

The military health system is take-the-good-with-the bad.

And then you have....Tricare? Doesn't have a good ring.

And then you have....Tricare? Doesn't have a good ring.

We don’t have to worry about the ACA being repealed because the Cheeto-Elect hasn’t written a policy that covers self-tanner, prostitutes, golden showers and syphilis-prevention, but not abortions, or birth control, because damn, that’s amoral! Who am I kidding? He can’t write! But seriously, I'm so grateful for military healthcare, because we don't have to worry about it.

Anyway, the worst part, and I kid you not, this truly is the worst part of Tricare (at the moment), so I have nothing to really complain about, is that Tricare thinks it saves money to remind patients that they have pending referrals. An automated line calls you every three days with a recorded message, telling you that “the patient born on XX/XX/XXXX has an active referral and should make an appointment.” Because I have approximately a million specialists and two million referrals, I get calls every day (because they are staggered). Because Collin has approximately half a million specialists, he gets calls every other day. Ironically, their efficient system has no stop-gap measure to notify itself that the appointments have been made. It’s a very specific type of persistent telemarketer.

Guilt Over Random and Specific Things

I watched an interview with a millennial star, a young Justin Bieber-ish-Clone (I’m so old!) who thinks they are the shit because they do movies, make music, and are also trying to change the world, one Tweet at a time. He made me feel terrible because he talked primarily about how if we all just stopped using straws, we could eliminate some staggering amount of garbage, in landfills, every year.

The specificity that it was straws made me feel like the shittiest person in the world because, well, I use a lot of straws. Tilting my head backward, to drink hurts. “Oh, but Rachel,” you say, “you have an excuse, it’s okay.” But, do I? I feel like when we know we could do something in a gentler way, none of us has an excuse to do something in the worst way. That goes for anything from using too much trash, to simply being nicer to one another. Open a door, hand a pan-handler your change, thank your waitress, be kind.

With a severe lack of appetite, I barely eat as it is, so I drink a lot of smoothies. Know what doesn’t go down a regular straw very well? Smoothies. Bryon found these amazing, massive, use-extra-plastic smoothie straws! They are even more wasteful, but also even more awesome. The whole idea is so plaguing to me, I think of it all the time. So, I wash straws and reuse them for days.

What’s my point? When you are sick and have a lot of time on your hands, you both have the time and the energy to wash straws, and to care about washing them. You become vexed by stupid stuff, and then wondering if it isn’t stupid after all; in the long run, it’s the small stuff that adds up to changing the world. Damn straws!

While writing this, to add some links though, I found these. Stainless steel, reusable straws. Guess whose Amazon Prime account got some more activity today?

Bryon is very excited about something else we get to hand-wash with a special brush. It recalls us to the days of Doc Browns baby bottles with the countless pieces and the itty-bitty brush. Shudder.

Bryon is very excited about something else we get to hand-wash with a special brush. It recalls us to the days of Doc Browns baby bottles with the countless pieces and the itty-bitty brush. Shudder.

Yep, got some. I even got some smoothie-sized ones.

Apparently, the no-straw thing is a big deal for the National Park Service, too. I always knew it was a no-straw zone, but learning more every day. Phew, you learn a lot when you’ve got time to care about things like straws. See, what I mean. Being sick comes with both, for lack of a better word, punishments, and perks.

Other Random, Disconnected Sick People “Perks” From This Flare

  • Sun Glare on the TV, but you can’t move because of pain, to either shut the drapes, or change angles. Alas, until the sun reaches its peak, half the television might as well be in shadow. Such a “first-world,” problem, a term I hate. A problem is a problem.  

 

  • I found a new perfume that I love from free-with-purchase Ulta samples. Taking “French” showers because both I stink, and my pajamas stink from lack of showering helps force you into the sample bags. Daisy, by Marc Jacobs. If you are curious, it doesn’t smell good when your son uses all of your samples, all at once, several sprays each. He did it about five days ago, and the bathroom still stinks. What’s the problem here? Daisy was over $80. It was a better deal to buy the gift set. Oh well, another present for me! I’m too old for drugstore perfume, right?

 

  • Running out Netflix shows. Theoretically, this is impossible; but, the reality is that indecisiveness is the actual problem, so I scroll, and scroll, until exhausted, I just stop on the first thing I see. Did you know that there is a whole section devoted to weird sex habits of the English? I didn’t. It was an accidental discovery on an incredibly misleading title. Now, Netflix thinks I’m a pervert, with a very specific interest in the sex lives of middle-aged Brits.

 

  • I’m home so often, that I can distinctly tell when someone has made a home, or auto-improvement that is “noisy.” For example, the mini-van down the street, has installed a very loud, and very piercing backup beeper, just in case its ever involved in a, well, there’s no way to finish that sentence logically. It’s a MINI-van. It doesn’t need a backup beeper. That’s insane. This is how I imagine the conversation about getting it installed going:

 

Female of Household: There’s lots of kids in this neighborhood, dear. I think a beeper would be a good idea.
Male of Household: Don’t you think it’s overkill?
Female: No...because....
Male (knowing he’ll lose anyway): Yes, dear
  • I’ve learned that Loki truly does like to lick your face. And your hands. And your eyes. And, he thinks he can fit his head in your mouth. To what end, I have no idea, but he’s determined to do it, every time I yawn, which with muscle spasms, happens a lot. I’m not sure what he hopes to find in there, but he’s a black cat, so maybe he’s looking for his soul. I should clarify that it’s really only my face, hands and eyes he’s interested in. We’ve bonded, which I can’t say that I hate. I love those darn animals, except that he likes to do his soul-searching at 4 am.
Ugh. I'm smitten. He can do whatever he wants and I forgive him. Look at that little widdle face.

Ugh. I'm smitten. He can do whatever he wants and I forgive him. Look at that little widdle face.

  • My pajama radius has expanded to, pretty much, anywhere. And, it doesn’t matter what kind of pajamas I’m wearing. I used to put sweat pants on, if I were getting in the car, leaving the house, letting the dog out, or getting the mail. Now, I don’t care. I drive Collin to and from school in footie pajamas and a robe. I stand on my patio that way with Daphne. This flare broke me for good. Considering lots of my pajamas have hoods and tails, because they are adorable, you’ve got to be pretty confident in your game to let that radius expand. “Why yes kindly neighbor, I am wearing a kitty tail. What of it?” My radius is only getting bigger. For “How I Met Your Mother Fans,” I’m thinking this is similar to the underpants radius rules, which still stand firm, for me, at shower to closet.
Urban dictionary , keeping all of us old people from sounding like fuddy-duddies with the youths.

Urban dictionary, keeping all of us old people from sounding like fuddy-duddies with the youths.

Sunday Snaps: A Week In Chronic Illness Photo-Style

Are You Sponge-Worthy?

PicMonkey Collage Sponge.jpg

I know when last I updated regarding the potential for brain surgery, the answer was no-go. But, I keep sprinkling the issue of my impending next one like it's no big deal. Why? Because of my stylin' sponge. It was the one thing my neurosurgeon wanted me to try, as a stopgap, to see if it relieved symptoms. I thought he was giving me a sweet, essentially patting my bottom, and passing me on my way. So, I barely could be convinced to do it. However, it's like a miracle. Plus, it makes me look hawt. The only time I can't wear it, is when I sleep (it doesn't stay on), and then wake up ten seconds later, because it hurts again. This is my sponge-hat-band. Pretty, right? And, this is my apparently my "just before waking in agony face," taken in whimpers.

Why does it work? Apparently, it crams the itty-bitty bit of dura (that sac-like-lining-thing that holds your brain together) back into the skull, where it belongs, through sheer force of pressure, and holds it there. Brain surgery, meet the sponge. Advanced science, meet pressure contact. It boggles the mind when simplicity enters the picture, doesn't it? An ace bandage and a sponge can provide immediate relief. Obviously, a person cannot live like this forever, so I'll be getting a titanium plate, and some hardware. Hooray for a future that includes peeing myself when the neighbor fires up the microwave, right? At least that's what my dad says. 

Have Your Cake and Eat it Too!

During especially bad flares, which this last one was, I may not eat for days, or even weeks. Between nausea from pain, pain meds, or just sheer exhaustion, I can lose a lot of weight all at once (hooray!). But, this kind of starvation exacerbates all my symptoms, of course. So, when I murmur something like, "I'd eat something with frosting," from under a heap of blankets, my husband instantly responds and makes cake. Even better, when you haven't eaten for days, you are allowed to eat 3/4 of a cake, all at once, because you are essentially starving. These calories don't count. Shhhh, don't explain to me why that's not true.

 

Smelly Dog...Smelly Dog...You Know the Rest

Are these terrible photos? Yes. Is she a pretty girl? Yes. Am I biased? Yes. Our gorgeous dog gets what we call...wait for it...zoo vagina. Yep, a stunningly, horrible, but accurate description, for the odor emanating from such a massive beast. You know that musky smell, of hundreds of animals at the zoo? Yeah, that's her. Add in the smell of, you guessed it. Her. Big dog=big smell.

California is dry, which is no secret. So, her skin is dry, and she's licking and scratching nonstop, creating all kinds of oil and nastiness; thus, zoo vagina smell reared its ugly head for us this week. Life doesn't stop when you are sick. Dogs still need baths, as she gracefully reminded us by clearing rooms this week. But, look how pretty she is when she's clean.

P.S. Ignore my husband's clogs and socks. We know he looks ridiculous. He know he looks ridiculous. He's on his old-man starter set. He has plantar fasciitis; those clogs feel good around the house, and I'd rather my man have happy feet than be uncomfortable. I draw your attention to his tolerance of the sponge headband.

Speaking of Life Not Stopping....

I made it to my boy's performance, and I'm glad I did. he got an award for his grade. He was honored as a "Good Citizen." I'm often worried that being surrounded by pain is going to stunt him in some terrible way, but when I see him care so gently for me, for his father, for those around him, I'm lifted by it. His principal pulled us aside, and cried when she spoke of how wonderful my child is, and how grateful she is to have him at her school. She said she has not seen a boy like him in many years, and that she is thankful to know him.

We'd promised our boy that we'd both be at the event (it's so hard for my husband to miss work these days), and that we'd go out to lunch, as a family, after, to celebrate. But, the clapping, the sunshine, all of it, were too much during my flare. I was done in. I could hardly stand up. I made a good show, and pretended to be fine, but I was leaning on my husband, and my son could tell, despite my best efforts at well-person-pantomime. School Holiday Programs, awards, homework, none of it stops because you are sick, not for a day, not for a year (not that I was ever much good at math homework assistance).

I still told him that we could go anywhere he wanted, but he said, "Let's go to In-N-Out, bring it home, put PJ's on, and have a Supernatural marathon." That boy is a miracle.

Good citizen, indeed.