Halloween!

First of all, I need to acknowledge the incredible outpouring of love and wonderfulness that resulted from Tuesday’s post, You’re Invited. Thank you all so very much, from the bottom of my overflowing heart, for being my Support Network!

 

Now to today’s post: Halloween!

I have not always been a fan.

IMG_1012

What can I say? I don’t like to be scared.

I don’t like when things jump out at me or yell Boo! when I walk by.

(I am here to buy TOOTHPASTE, Walmart! Turn those dang motion-sensored skeletons OFF; I have a heart condition for goodness sakes. Jeez.)

However, I do like to dress up.

Once I realized that Halloween could be more about costumes and strangers giving me candy in a safe and socially acceptable way, I got more into it.

Oh costumes! The very best part of the Halloween celebration!

My mom used to make my costumes, which was very crafty of her (and truth time, thrifty, of her- those plastic/polyester store bought things are EXPENSIVE).

I was a devil the year I was born (I could not find this picture anywhere, but it was cute, let me tell you.) and wore a costume that both my sister and my mom herself had worn when they were also babies.

When I was one, I was a leopard, also a recycled costume of my mother’s (she had good stuff!).

IMG_1013

At two, I was a ballerina who had to face a snowstorm, though the snowstorm bit was not a part of the original costume design- we had just moved to Minnesota and were greeted by the Halloween Blizzard of ’91, which people still talk about. It even has its own Wikipedia page: http://en.wikipedia.org/wiki/1991_Halloween_blizzard

snow

At three, my sister’s blue ballerina costume was repurposed into a Cinderella costume. The questionable choice of hairdo was entirely my own doing.

IMG_1014

I don’t remember the specifics of Halloween when I was 4 but going into kindergarten brought around the greatest thing ever:

The Elementary School Annual Halloween Parade

I don’t know how many schools do this. I feel like everyone should. It’s just not enough that your neighbors get to see you all decked out; there should be parading in front of your and your schoolmates’ friends and family, followed by games and cupcakes with day-glo icing, at every school, every Halloween.

Kindergarten also marked my becoming a little, um, creative? with my costumes. I used to make up elaborate stories, and I happened to create one about a princess who was trapped by an evil queen who made her wear a mask (or something, I really have no idea what my tiny brain was thinking) and I wanted to be that for Halloween. Never mind that it wasn’t like, an actual “thing”- I figured I would tell everyone my story and they would go “Oh, that’s brilliant, you’re amazing, of course your costume makes perfect sense.” Which it didn’t, not really. I wore my mom’s old prom dress, a giant feathered mask that covered my whole face and tiny plastic high heels, which severely impeded my Duck-Duck-Goose abilities post-parade. The reaction was “Ok, sweetheart, whatever you say,” from adults, and “That’s weird!” from my classmates.

Psh. Whatever. I was a creative genius.

First grade was probably my most favorite costume ever. I was Scarlett O’Hara. Yes, I was 6. Yes, I knew who she was-I had already watched Gone With the Wind 982 times by that time. No, none of my peers knew what the heck I was, again. My mom was in the Miss Maryland Teen pageant in 1981 (and won Miss. Photogenic, Rock on Mom!) and she transformed her prize-winning pageant dress into a costume for me (#Sacrifices #BestMomEVER). She even had the brilliant idea to sew a hula hoop into the bottom seam of the dress so that it would flare out around me, no petticoats needed.

IMG_1011

Have I mentioned my Mom is one kick-ass costume maker?

‘Cause she is.

Second grade marked a turning point in my costuming life. I really do not remember what I was, but I’m sure it was something totally random. What I do remember was that my best friend A wore a poodle skirt and saddle shoes to be a bobby soxer, and she got to wear LIPSTICK. Which let me tell you, was a huge deal. It was bright red, a color the cranky old second grade teacher remarked was “a little much for daytime” (She was 900 years old. Do not rethink your second grader’s lipstick choices, A’s mommy, who I know might see this blog- it was amazing).

I wanted to wear lipstick with questionable morals!

So I totally copy-catted her and was a bobby soxer the following year. I made my mom get me the shiny polyester outfit from the party store. (If I can find this picture I will edit this post to include it because Wow did I go overboard with the Lipstick- mine was hot pink, not red, and man, was that polyester shiny.)

It was the end of an era.

Other costumes I’ve had: the classic “Just Woke Up” girl (which really means you get to wear your PJ’s all day); an M&M (a borrowed costume from another classmate I envied); a Miss World pageant contestant (Miss Italy, woot woot!); Tinkerbell; and a Christmas Elf.

The Christmas Elf year was 6th grade. I was absent a lot, and completely missed the memo that costumes were so not cool that year. Everyone came in plain clothes, with way too much makeup for daytime (the second grade teacher would be mortified!) and the too-cool-to-care attitude to match.

I came dressed as a Christmas Elf with bells on my green felt covered toes.

Yeah…

However, I was not alone on the Island of Misfit 6th graders.

One boy came dressed as the Energizer Bunny.

Really.

Fuzzy pink bunny suit, giant drum strapped to his front.

We would later go to Homecoming together in High School.

Good times.

My high school didn’t let us dress up for Halloween. It didn’t make any sense at all because we had Spirit Week every year where crazy costumes were required, yet Halloween was a no-no. Senior year, my friend M was so mad about it that she went to a costume store and rented a Glinda the Goodwitch costume- pink ballgown, giant crown, magical wand, the works- and wore it all day. The teacher who wrote her detention slip said it pained her to do so. It was fantastic.

Since I didn’t go to a residential college, I missed what looked like a good time at a number of costume parties. No one could confirm if it was actually as fun as it looked to me, because it was college, and they don’t really remember the parties all that clearly.

I have been itching to break out my costuming skills for a while now. I’ve always wanted to have a really spectacular costume party, complete with candy eyeballs floating in the lime flavored jello mold. It hasn’t been in the cards just yet. I’m planning now for next year.

Oh, but I miss the costumes!

For me, Halloween is more about releasing your inner Alter Ego than it is about anything else.

Technically, it’s not quite Halloween yet, but I decided what the heck.

Please meet my Alter Ego, a Roller Derby girl by the name of Eleanor Bruisevelt:

Photo on 10-30-14 at 10.21 AM #4

FDR tattoo brought to you by Covergirl eyeliner and lipgloss. #ToughChick

I fell in love with Roller Derby a few years ago, when the super fun movie Whip It! came out. We went to a Roller Derby match for my 21st birthday and it was awesome. At the time I was in a wheelchair, and I really felt like that should have qualified me to play- so what if I was on 4 wheels instead of 8?

Being an actual Derby girl is on my Bucket List. Seeing as I have fibromyalgia (read: ouchy) and Derby is a contact sport (read: super ouchy!) it may not be my most logical move. But it looks so funnnnnn!

Right now, I’ll settle for being a Roller Derby girl for Halloween. I have to use my Eleanor Roosevelt inspired Derby name sometime. I mean really, it would be a shame to let that name go to waste.

Photo on 10-30-14 at 10.45 AM

#EleanorBruisevelt

 

What are you dressing up as this year, Chronic readers? I would love to hear all about your costumes of Halloweens past here in the Comments or over on my Facebook page: www.facebook.com/iamchronicallywell

If you’re into Derby, check out The Charm City Roller Girls, Baltimore’s finest Roller Derby. I’m wearing their t-shirt with my costume: http://www.charmcityrollergirls.com

Want to know your Roller Derby Alter Ego’s name? This is the very scientific name generator quiz I took:http://helloquizzy.okcupid.com/tests/the-whats-your-roller-derby-name-test

Have a safe and happy Halloween everyone!

Advertisements

An Invitation

youre-invited

Dearest Chronic Reader,

You are cordially invited to be a member of my Support Network.

RSVP appreciated.

Love,

Nic

Friends, I feel like I have no idea how to create a “Support Network.”

I’m not even sure I know really what a “Support Network” is; its purpose, at least, is self-explanatory: to support.

Support: to bear all or part of the weight of; to hold up.

Well, ok, self-explanatory is in the eye of the beholder…

Because even with a standard Google-definition…what does support really mean? Or at least, what does it mean to me?

Every book I’ve ever read about chronic illness tells me that it is essential to have good support. A Support Network/Team/Person(s) is what will get you through the tough times, will celebrate with you in the good times, etc., etc.

This is all well and good, and, of course, I want one, but how does one actually go about it?

Are formal invitations required? I wasn’t sure, so I included one at the top, just in case.

Is it some unspoken invitation, in which you simply assume that someone is willing to be a “Support Person”? Doesn’t that just end with *someone* making an ass out of u and me?

I have friends. I love them. I feel that they love me.

Does that mean I already have a Support Network, just one that is not aptly named as such? Am I not recognizing them when I really should be throwing a parade in their honor?

macys-great-american-marching-band-in-macys-thanksgiving-day-parade

A Just-In-Case Parade

So many questions today, readers.

I have a good medical team now. You’ve met them before; they are the Avengers with some side help from S.H.I.E.L.D. https://iamchronicallywell.com/2014/07/21/avengers-assemble/

However, I’m not going to call my cardiologist to say, “Hey girl, how’s it going?” or ask my rheumatologist to help me with my grocery shopping if I’m having a rough day.

But would I ever even ask *anyone* for help in the first place?

Aha, here we go, the real problem.

I’m a bit of a loner.

Not in the creepy, trench-coat wearing, duffle-bag carrying, shifty eyes-loner sense, but in the sense that I just function mostly in a “lone” state.

180px-RangerSilver

Hi ho Silver!

IMG_0966

Same thing, right?

To be Politically Correct, I’m an introvert.

And, I’m also a little bit of an oddball about asking for help in general.

Example time: When I was in elementary school, sometimes I’d get stuck on a math problem in my homework. My mom would ask if I needed help figuring it out, and even if I’d been sitting there for forever with my worksheet nearly shred from erasing over and over, I would say no. My mom is an accountant. She could have been really helpful with those math problems. Something about asking for help, or even accepting it when offered, felt weird to me, like it meant I couldn’t do it by myself (which, um, I couldn’t, but heaven forbid anyone should know that!).

When you have a chronic illness, and suddenly all or most of your autonomy is forcibly removed by circumstances (or faulty autonomic nervous systems) beyond your control, you need help. In the sweeping, I can barely brush my own hair sort of way.

It’s uncomfortable.

You don’t want it.

You need it.

Icky.

Now though, I’m past all that (*fingers crossed it stays this way for ever and ever and ever*), and I just feel a sort of disconnect.

Sure, I’m sharing <AWholeLotOfStuff> with the Internet, but I’m still pretty guarded. There is <AWholeLotOfStuff> that I am choosing not to share with the Internet.

Not all of it is negative- I’m not having some Meredith Grey dark and twisty meltdown behind closed doors (ok, only on every other Saturday and the 3rd Wednesday of the month- kidding, kidding…maybe).

images

Some of it is just neutral, some of it is positive, though I tend to share that part most freely with the Internet.

I feel connected…to my computer screen.

Do I feel connected to other people?

…um

…Not always?

This is a classic case of “It’s not you, it’s me.”

Really, it’s me.

I’m not very trusting (that happens when you are not/mis-diagnosed for 7 long and painful years), I’m not into being vulnerable (that happens when your illness makes you vulnerable, not on your terms), and I feel sometimes like I need to send formal invitations and get RSVPs back to know if people are in my Support Network or not.

So, um, not to be pushy, but are you?

My favorite Chronic Illness book is the Chronic Illness Workbook by Patricia A. Fennell. It’s really a step-by-step How to be a Chronic guide. The way she describes a “supporter” is this:

“These people acknowledge and accept the real life that you live now [emphasis mine]. They understand your limits but don’t consider the fact that you have limitations to be an impediment to intimacy and engagement,” (Fennell, 162).

I like that. I appreciate that. I can think of people who are like that in my life.

Jenni Prokopy over at ChronicBabe.com (whom I adore- check her out!) wrote an article where she describes her Team Jenni: http://archives.chronicbabe.com/articles/16/

“Those folks who are helpful, friendly, enthusiastic? Keep them close. Don’t be afraid of seeking and accepting help, of asking for what you need. Be honest with them, strengthen your relationships with them, and the results will pay off for many years to come. And whenever you can, join someone else’s team too.”

Jenni counts not only friends and family as members of her Team, but also the people she comes in contact with on a regular basis, such as the UPS people and her cleaning lady. She can count on them so she counts them in!

I like that too. I should be counting more people in.

I guess it’s just a weird thing, this notion of a support network. Now we have Facebook and all sorts of social media too, so the idea of “networking” is kind of warped- that sort of instance where you have 900 people on your “friend” list but you only talk to 5 of them in person (and really only like maybe 50 of them in the first place).

Is it ok to only talk about the weather with some people? Does that negate them from being in the Support Network because it’s such a vague and surface level conversation?

I can’t talk about my illness all the time. Its with me all the time, its affecting me all the time, but sometimes I just want to talk about how Olivia Pope really should have stayed on that island with Jake Ballard (#AmIRight?).

cksszrtdq6pkjgv8i9kd

THIS. ALWAYS.

Yet, I don’t always want to talk about Olivia Pope and how she should have stayed on that island with Jake Ballard, either. Sometimes I need to talk about how scary it is trying to plan a full and meaningful life while carrying around this lug called Chronic Illness (#RealLife #ItsHard).

1721ff67c3e75f994f55e62eb6711eb5

Horribly, horribly, busy…

As much as my workbooks and kick-a$$ chronic websites are great guideposts, they never say how to actually implement this into your life.

So we’re back to the beginning, Chronic readers- bring it up directly, or vaguely assume that it’s already there and happening?

I can’t deal with vague-ness (is there a word that means vague-ness? I can’t think of one right now) so I’m going to just be direct.

I invite you to be my person(s). Be my Support Network, friends.

I promise to have your back as well, whether you’d like to discuss how Cristina should never have left Grey’s Anatomy or if you need to tell someone how scary it is to make your own life full and meaningful, Chronic Illness lug or not.

I’m responde-ing to vous. (Sorry, for the butchering, francophones.)

Merci beaucoup in advance to those who responde to moi ❤

25560-a-candle-loses-nothing-by-lighting-another-candle

The Joy Of Upright Exercise

My recumbent bike and I are consciously uncoupling.

IMG_0968

While I like to think of it as a mutual decision, an amicable parting, my recumbent bike might say otherwise.

RB (to simplify things) would tell you that I have sucked the very life from its pedals. Which I might have, accidently of course; that weird clunking noise it makes now was not there originally.

RB is not the only party with grievances, though!

While I have been known to use the phrase, “Sorry, can’t talk right now, I’m chained to my recumbent bike,” in jest, it may not have totally been an exaggeration. RB really meant business in our workouts together. Even on the lowest resistance setting, RB made gaining cardiovascular endurance a challenge.

(Sure, RB will tell you that’s the point- to which I would reply, “Well would it have killed you to make your point with flowers? Or the occasional box of chocolates?”)

So you know, we’re taking a break.

To “find” ourselves.

“Rediscover” our passion for exercise- individually.

I promise RB, there was no one else…

IMG_0971

Oh, hey there, Treadmill! Whatcha been up to lately? Looks like someone’s been dusting themselves off!

Yes, Chronic Readers, I have moved on… into the loving, welcoming arms of Upright Exercise.

IMG_0975

This is a big milestone for me, so please excuse me while I take a moment to do a Happy Dance…

Happy Dance

Ok, I’m back.

I do not want anyone who is reading this blog for the first time to think that I just up and decided to ignore the main symptom of POTS (orthostatic intolerance- an inability to maintain blood pressure when in a standing position) and hopped right up and started working out on a treadmill.

No, this has been 7 whole months in the making.

Probably more like 11 years and 10 months, but who’s really keeping track?

I have a pattern. I will start to exercise regularly for the purpose of attaining some goal- for example, to be well enough to attend my sister’s grad school graduation, to get through a semester of school, or to go to a friend or family member’s wedding. I start about 2-3 months in advance, work my way up to some level of “functional,” and then after the event, collapse in a heap of “OhMGee that was so hard, I need to recover by sleeping excessively for a month…or two.” This inevitably leads to a return of whatever “non-functional” definition I was previously operating under.

Not this time, Chronics!

I started in March of this year. In March, I wasn’t thinking of anything long-term. My new rheumatologist made the very strong suggestion that I needed to be moving in order to sleep better. As my sleep quality was horrendous, I figured, ok, I’ve got to do this now. So I started with the recumbent bike.

When it got hard, I imagined that I was biking to Dollywood, in Sevierville, TN (Don’t laugh. 1) It’s my happy place. 2) You do what you have to do.)

IMG_1113

Outside the Dollywood entrance, artfully posed so you can’t see the PMLE taking over the left side of my face.

Last summer, my family visited Dollywood while on our Great Big Family Roadtrip Vacation (our first vacation in approximately 11 years) and when we went to Dolly Parton’s theme park of wonderfulness, I walked around for something like 3 hours without issue, even though I had a monster Polymorphous Light Eruption outbreak and had spent that whole morning unable to get out of bed. So it is also a beacon of hope and light and feeling well, at least to me.

What can I say? Dolly is magic.

IMG_1124

Fairy godmother? I think so!

When I was huffing and puffing way back in March, I told my family I was going to count my miles and “bike” to Dollywood. And when I had reached that goal, I was going to go again.

I probably should have thought to add “Save money to go back to Dollywood” to my agenda when planning this out…but some part of me didn’t think I would make it. It seemed too big, too far out of a goal. Up until this morning when I sat down with my handy dandy Marvel Heroes calendar where I’ve written down all my miles, I still did not think I’d made it.

But, you know what, Chronic readers?

I did make it! And then some!

Since March, I have biked to Dollywood and home again, with an additional 223.2 miles set aside for pit stops and detours. Technically, I could add in a trip to the Biltmore Estate in Asheville, NC (it’s on the way!) and still come back with 27 bonus miles.

Do you know how many miles I have recumbent biked this year, between March 1 and September 26?

1,205.2

Suffice to say, my recumbent bike and I have become close.

To all you POTSies out there who are reading this and cheering me on while simultaneously thinking that you could never do something like that, as I must not be as sick as you (#LiesWeTellOurselves), whatever, whatever, I present to you the break-down of those 1,205.2 miles:

March: 75.3 miles I was starting out, slowly, slowly.

April: 223.3 miles. It was a good month.

May: 417.9 miles. It was the BEST MONTH EVER. Also, the only month I exercised every single day.

June: 38.9 miles. I had a Polymorphous Light Eruption that lasted All. Month. Long. And required a whole lot of prednisone to clear up. June sucked. Plain and simple.

July: 134.3 miles. Things are looking up. I got a rowing machine, so I split my time with row, row, rowing my boat.

August: 168.5 miles. Perfectly respectably numbers. I added some at-home Zumba dancing that took me away from pounding out the miles, but it was super fun, so whatever.

September: 147 miles. Not bad at all!

To my POTSie or otherwise exercise-intolerant readers, look at that. Down, up, down, up. It’s ok to fall off the wagon.

It’s that whole getting back up thing that’s been hard, at least for me personally.

Yet, I seem to have finally figured it out:

Apparently, you just wake up the next morning, treat it as if it were a new day (guess what, it is!) and keep going.

Face. Palm. Right? I don’t know why I never grasped the concept before.

NOT THAT IT ISN’T HARD.

Please don’t take my excessive sarcasm as discrediting the achievement. Because it’s totally an achievement, and I think that I might even make myself a certificate to hang on the wall. Commitment is the hardest thing ever. In the whole universe. Don’t let anyone tell you otherwise.

ANYWAY.

I have successfully, albeit imaginarily, recumbent biked to Dollywood. I realized a few weeks ago, even before I knew my goal was met, that the recumbent bike and I needed some time apart. Not going to lie, all that biking gets pretty boring after a while, imaginary trip to Dollywood or not.

On September 30, I started Upright Exercising.

YAY!

I started with a leisurely walk, every day for a week. When I realized that maybe all that biking had perhaps created some sort of cardiovascular endurance (one would hope!) and that walking was not going to cause me significant pain/danger/fill-in-your-own-version-of-awfullness, I decided it was high time to look into something my good friend E had suggested all the way back in April, when I was a little full of myself (it was a good month, remember?) and emailed her for ideas, thinking I could skip all this “building up” business and go right to Upright workouts:

The Couch to 5k Program.

Dum, dum, dummmmmm…

Yep, Chronic readers, I started one of those. For the unfamiliar, a couch to 5k program is a plan in which you get up off your couch and slowly build up to running (yes, running) a 5k. You do not start running full out right away. For example, week 1 of my program had me walk for 5 minutes to warm up, then alternate 30 seconds of running with 90 seconds of walking, then end with 5 minutes walking, for a total of 30 minutes. So I ran for like 8 minutes.

Hold up, let me repeat that: I ran for 8 minutes!

Woman-running-on-treadmill-2

I am POSITIVE that this is what I look like when I run, and so will not be posting actual photos of myself doing so…

Sorry, sorry, my head is exploding with pride, I promise to bake a humble pie LATER but right now I’m super excited.

Now I am on week 2 and am running for 60 seconds, with 2 minute walking breaks, for 30 minutes.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Like all brains used to the chronic illness cycle of up and down, my brain is very dutifully warning me that, “This might not last,” and “How long do you think you can keep this up?” To which I am very happy to reply, “I really don’t care, I will keep going till I fall off (which is actually a recurring nightmare I keep having, thanks a lot subconscious!)!!!”

Clearly that whole Runner’s High thing can happen whether or not you inhale.

If you too have spent 7 months recumbent biking to Dollywood and home, and are looking for something new to do, I highly recommend the NHS Couch to 5k podcast that is available on iTunes. It’s British; Laura will be your running guide. The music is cheesy, but she tells you when to walk and when to run for 9 weeks. All you have to do is follow her instruction. Plus it’s free, which is lovely!

I would love to know about your own exercise journeys, Chronic or not, Readers! Leave me a comment here or on my Facebook page: www.facebook.com/iamchronicallywell. I would love to hear from you, most especially if you’d like to finance a free trip for me to go to Dollywood. I did bike there, you know. I’m pretty sure I deserve a reward.

That time I Polymorphous-Light-Erupted at the Clinique counter…

I am a sucker for a gift with purchase.

clinique-logo

Clinique has been my favorite cosmetics line since I learned there were such things as upscale cosmetics; those that do not contain glitter, cost 99¢, or get purchased alongside such staples as disposable razors and a pack of gum. The fact that the company is dedicated to sensitive skin issues and is 100% Fragrance Free and allergy tested by dermatologists has kept me a loyal customer despite my newly acquired sensitivities to everything. Someday when I am a well coiffed, sophisticated retiree of a certain age, I plan to work at the Clinique counter at Lord & Taylor (only the greatest department store ever, in my opinion). Just for funsies and to keep myself “fresh.” That’s how much I love Clinique- I am planning that far ahead.

So, yesterday, when I got a happy postcard in the mail announcing that (at long last!) it’s Bonus Time at Macy’s! (another of my favorite department stores) I was all set to drop my $27 on a qualifying purchase and enjoy my extra goodies.

In short, I love makeup, and I love makeup that doesn’t freak out my skin even more.

However, in all of my Clinique product loving life, it never occurred to me that the fact that the brand’s signature, beautiful, clean, hospital-white counter is brightly lit with mega-watt bulbs that shine out at you from underneath the glass might one day pose a problem to my previously described super sensitive skin.

Clinique02_V_17Oct12_pr_b_1080x720

You can probably see it from Space.

Well, it has occurred to me now.

You see, friends, of all the 7 Deadly Sins, Vanity happens to be my personal hamartia (fatal flaw). And Vanity, that tough old broad, is taking her job very seriously.

This is what happened:

I went to Macy’s with my mom last night. I already knew that I wanted to get makeup remover (Take the Day Off for Eyes, Lids, and Lips…not to be a product pusher, but it’s good stuff) and red lipstick. I didn’t know which lipstick I wanted, so I spent a good 5-10 minutes mulling my options. I decided on Crimson, and the very helpful Clinique Lady went to look for it behind the counter. She was back there for a while, so I continued to peruse the other products. A glowing bright white section beckoned me like a moth to a flame to come hither and investigate such confections as Moisture Surge Overnight Mask, which I have heard is great for dry skin.

Speaking of dry skin, I have it, and so that morning (let’s be honest-afternoon) after showering, I covered myself in a lovely product called Cetaphil. Cetaphil is a heavy cream for sensitive, super dry skin, so it’s kind of my go-to product. It doesn’t have sunscreen in it (bummer!) but it was cloudy yesterday (yes, I know the UV rays can still find you when it’s cloudy) and I spent most of the day inside, so I put some on my face, as I’ve been creeping towards peeling territory lately. It worked, I was happy, I forgot about it.

Let me just tell you, Chronic reader, that all creams (good creams that is) contain some sort of fat. Your skin needs fat (call it “good fat” if it makes you feel better) to be plump and moist and happy. Eat avocados, olive oil, salmon, etc. to get your insides in order, and on your outsides, get yourself a dose of fat-like product to perk yourself up on the outside. This is why Crisco, that hunk of “vegetable” shortening in your pantry is the wunderkind of do-it-yourself/natural/homemade remedies for scaly skin. (Put it on your feet before you go to sleep. Seriously. Magic. But be warned that grease stains, so wear socks you don’t care about. Crisco will also get gum out of your hair, get goo off of anything your toddler stuck a sticker on, and will remove wax from the countertop, if say, you happen to spill while waxing your own eyebrows…)

In kitchen uses, Crisco and its related fats will fry up just about anything you want to golden perfection. It’s handy that way.

Ok, getting back on track. Let’s recap, shall we? Crisco fries food. Cetaphil is like Crisco in its fatty ingredients and consistency. I have Cetaphil all over my face. I am leaning over a counter that is brightly lit from underneath glass, which is magnifying the intensity of the light.

Do you see where this is going, Chronic friends?

fryanegg_4egginpan

Me

Yep.

Remember how I have that teensy-weensy allergy to (sun)light that results in a rash/reaction called Polymorphous Light Eruption (see What’s POTS? to the left)?

Yep.

That’s where this is going.

My Crimson lipstick was not in stock, so the Clinique Lady ordered it. She needed all my information so they can send it to me at home. My face felt really hot, I was still standing next to that display, but I was trying to ignore it. It’s late, I’m tired, but I just took my blood pressure meds and I’m wearing my compression stockings so I’m good. Right?

Right?

My mom comes around the corner behind me as I’m checking out. She asks if the Clinique Lady found my lipstick. I turn around to answer her, and she sees my face.

Her reaction:

120503_Exp_Scream-EX.jpg.CROP.rectangle3-large

So I knew it was bad.

Then it got realllllllly hot up in there. Like really, really warm. And my throat started to feel weird. Like I swallowed something large and furry, like an unpeeled kiwi.

I put my cold hands (#POTSproblem) on my face and felt the intense heat radiating. I said, “Wow, it’s warm in here. Is my face red? I don’t know that I feel well.”

That’s when friendly Clinique Lady volunteered this helpful information, and I quote:

“It’s ok if you faint. I took a class and I’m trained in what to do if that happens. I mean don’t, because that wouldn’t be good. But if you do, no problem. I can handle it.”

To which I replied: “Good, because I have a medical condition that causes me to faint.”

Usually people freak out <just a pinch> at this point. Not Clinique Lady. Clearly that was some really top-notch training she attended. She stops what she’s doing, looks me in the eyes and says, in all seriousness:

“It’s ok. You’re safe here.”

Which made me kind of laugh. A lot. And not just on the inside…

It was so sweet! So earnest! Clinique really is my happy place!

My mom figured this was a sign of me cracking up or entering some strange stage of severe allergic reaction and made me sit down at the poorly lit Estee Lauder counter in their makeover chair while she finished my transaction.

Luckily, the sight of my Polymorphous Light Erupted face was enough to keep their counter-keepers from spritzing perfume samples in my direction.

The Clinique Lady handled the whole thing exceptionally well and even brought my bag around to Estee Lauder for me so she could confirm that I wanted my Bonus Gift in the Violets color selection. Which I did, thanks. A+ marks for her!

Mom and I on the other hand? Well, let’s just say it was nice of Clinique Lady to tell me I was “safe here” because it calmed down my mounting panic considerably (Mom was Not Convinced) and I remembered to do my very important breathing exercises. Mom kept looking at me sideways and shaking her head. A lot.

You can’t blame us- we’ve never had an instance of actually watching this reaction erupt on my face before.

Usually, I have unprotected light exposure (SPF, kids, it’s important) and I get a little spot that grows over a 24-hour period. I can only imagine that this was different because, as I was leaning so intently over the brightly lit counter, the light (an uncovered light bulb) was magnified by the glass of the counter top and then reflected by no less than three mirrors, surrounding my poor lard-ed up face with a light beam so strong that I had an immediate allergic reaction to it.

polls_ant_burning

I just really wanted to look at the pretty products…

What were we to do?

Well, we had to go into Costco to get peanut butter and Prilosec (not for me, in case you were wondering), and they have a fountain drink machine. We happened to have an empty Ziploc bag in the car, so we filled it up with ice cubes (#ThanksCostco) and I walked around Costco with an ice bag on my face for a little bit. I also drank a Coke. And we made bad jokes to keep from freaking out.

And you know what?

It worked!

The ice took the “burn” out of my face, and about 2 hours of icing later (we left the mall right after we got that family size PB&P combo) my PMLE went from a tomato face medical emergency to a small circle on my upper cheek that I have been assured is “not that noticeable”. The swelling subsided with a large dose of ibuprofen, and as long as I keep it in my system, I feel like maybe I’ll be ok.

Situation, contained.

The most ridiculous part of the whole thing? In the middle of our making-bad-jokes-marathon, Mom turns to me and goes, “Well at least you have something to write about for your blog tomorrow!”

Yes, yes, I do.

eye-roll

Tina Fey gets me.

Super glad that keeps happening.

Lessons learned:

Vanity is dangerous, darlings.

Wear sunscreen, even when shopping indoors.

Ice and Coca-Cola fix most things.

The Clinique counter is hazardous if you are allergic to light. (I may need to reconsider my post-retirement employment plan.)

However, their employees are exceptionally helpful.

And their gifts-with-purchase are kinda worth it.

clinique bonus 2014

It is a $70 value for goodness sakes.

Kinda.

🙂

Remembering to Breathe

Inhale, 2, 3, 4.

Exhale, 5, 6, 7, 8.

I have not been doing this very well lately.

It’s been more:

Inhale234

Exhale5678

OkI’mDoneNow!

I have been so happy to have energy and motivation, even in prime Fall-Slide season (*Nic note: Fall Slide= when the season changes from summer to fall, and the change in weather causes all of your carefully crafted Chronic progress to slide off a cliff.), that I have been neglecting the very thing that got me here:

Breathing.

cfad3f0952c081ab12d5155af47c8b78

“Hulk no Smash. Hulk no Smash. Hulk…maybe Smash a little.”

Yep, it’s a Hulk day, kids, because I’m talking about Biofeedback! (To read all about how I’ve designated my medical team as different members of the Avengers, check out Avengers Assemble: https://iamchronicallywell.com/2014/07/21/avengers-assemble/ )

First of all, what is Biofeedback?

Bopfeedback-loop

The simplest way to explain it is that Biofeedback is a training program in which you “train” your body to become less reactive to things like stress, pain and tension. This is achieved through breathing practice, with occasional guided meditation or fun “brain games” designed to help you use your brain to change your bodily reactions. In order to track your progress, a patient is hooked up to a monitor, and their breathing rate, heart beat, body temperature, and skin conductants (sweating) are recorded. It’s non-invasive, and deceptively simple.

You just breathe, right?

Kind of…

There are different types of breathing. First, there is the kind of breathing that most people are used to, but is not the best way to do it: Chest breathing. Put your hand on your heart, Pledge of Allegiance-style. Does it move up and down? It probably does. This is stressful breathing. Don’t feel bad, we all get stuck there at some point or another.

What this type of breathing means is that you aren’t taking full or deep breaths. Your breathing rate is probably pretty quick, too. When you breathe this way, it’s a signal to your physiological system that you are about to be attacked, thanks to the flight or fight reaction we all have hard-wired. If you were running away from a sabertooth tiger right now, this kind of quick-pace breathing would be helpful, as it signals a release of running away/fighting hormones like adrenaline, which you would need in a sabertooth tiger situation.

Except, there are no sabertooth tigers (your boss doesn’t count!) and you don’t need to jump up and fight to the death or run for your life right this second when you are, say, writing a blog post (at least I would hope not!).

sabre_toothed_tiger

Super glad these guys are extinct!

If you are breathing this way, day in and day out, with no legit-sabertooth-reason, you are stressing your body, BIG TIME. Excess adrenaline, cortisol, and all their other little stress-hormone friends need something to do. If you are not having a caveman moment, they have to find something else to do to occupy their time. This is when they decide things like your immune system would be fun to beat up instead.

I prefer my immune system unbullied, thank you very much.

So, I have been working with a biofeedback therapist for a while now, to learn to breathe correctly and allow my body to find its natural calm again.

If you are looking for a review of biofeedback and need a quick recommendation here it is:

It works, it works, it works. Do it, do it, do it. You will be SO GLAD you did.

What does breathing correctly look like?

Put your hand on your chest again. Now, put the other one on your abdomen, at right about or just above your belly button. That’s where your diaphragm is. Focus on breathing into your belly button. THAT hand should move, not the one on your chest.

Congratulations! You’ve just practiced abdominal/diaphagmatic breathing, the least stressful way to breathe.

Feels weird right?

Of course it does! You’ve been breathing wrong since you had to take the SAT in high school! Or longer, who knows?

If you have access to a baby (Wow, THAT sounds weird. I mean if you know one, or are babysitting or have any other legitimate reason to be around an infant), watch how they breathe, especially when they sleep. Those cute little tummies are just plugging away, puffing up on the inhales and emptying out on the exhales.

Baby-Sleep

#Jealous

Babies do not have excess adrenaline problems.

If you work with a biofeedback therapist, while you are re-learning how to breathe correctly, you will be able to see, through the power of just a few wires stuck to you and then plugged into a computer, how much of a difference changing your breath makes to your physiological system.

For instance, after a few minutes and a guided meditation (more on that in a minute), my body temperature rises (a good thing- blood vessel constriction is a symptom of tension and makes you cold in your extremities), my heart rate slows, and my sweaty palms get ahold of themselves and ease up on the clamminess.

Now, do you need a monitor to show you that? Not necessarily, if you are extraordinarily self-disciplined and incredibly in-tune with your body rhythms. But if that’s you, I don’t think you really need biofeedback in the first place… It is so helpful and motivating to see the power you have to change how you feel, all lit up on an easy to read monitor.

You see, as a Chronic, it is far too simple to lose all sense of control over yourself.

Why wouldn’t it be? It feels like this illness or illnesses (don’t they always seem to come with a plus-one?) just showed up one day and took over. Your body quickly becomes this thing, separate from You, that doesn’t listen to what you say, think, wish, or desire. If you let that type of thinking take root in your brain (I have no control, ever!), it’s going to be a long hard road for you, Friend (said the wise, old Voice of Experience).

For me, biofeedback reminded me in a big, bold way that I still get to have power here. It may not feel like it all the time, but I do still wield some control. I can choose at any time to slow myself down, breathe correctly, and therefore influence how my body is acting.

Oh, so wonderful a feeling!

And if it’s so wonderful, you’d think I’d be doing it all the time, right?

Well…

I may have kinda-sorta fallen off the wagon…

I’ve been distracted!

I’ve had so much going on!

My breathing practice has gone from a strict two- 20 minute sessions daily to a sporadic couple of times a week.

I have gotten caught up in the wonderful results, and have forgotten what got me here in the first place.

Because of that, I have been a tiny bit– really, just a teensy, weensy, bit– Hulk-ish lately.

alg-hulk-jpg

“It’s mid-afternoon and I’m SO FLIPPIN’ CRANKY.”

Terribly sorry, Mom/Nick Fury…

marvels-agents-of-shield-samuel-l-jackson-as-nick-fury-557x360

“Seriously. Do your breathing.”

So here I am, Internet, with a declaration of re-dedication to my breathing practice. I could use more Bruce Banner flashes of genius in my life, and I just can’t have them if the Other Guy is hanging out more often than not.

hulk-make-love(1)

#UltimateGoal

I have some really great guided mediation CD’s that I am dusting off. My favorite is one where you imagine yourself walking on a beach, calm and peaceful, timing your breathing to the gentle rolling of the waves…See, I’m more relaxed just thinking of it!

Guided mediation can be really beneficial, because our brains have a weird habit of believing everything we tell them. For instance, if you imagine that, oh, I don’t know, if you were to end up in an enclosed space, you might get stuck, and all the air would drain out of the room, and it would be awful and you wouldn’t be able to breathe, and, and…well, you might end up a pinch claustrophobic. At the complete opposite end of the spectrum, if you imagine that, even if you do end up in an enclosed space, you’d have plenty of air and it would be pleasant, cozy even, and not at all awful, then you might end up working through your claustrophobia issues (#TrueStory). Your brain just needs to know which situation to believe.

So, guided mediation CD, check.

My personal meditation space is ready, check.

asian-deck

I wish…

Now all that’s left to do is breathe…

Sigh.

Our brains are powerful things, Chronics. It’s important that we remember to use them 🙂

Liebster Award!

liebster-award

Good Morning, Chronic Readers!

I’m very excited for this post today, as I was nominated for a Liebster Award! The very sweet and talented A Body of Hope has nominated me, and I want to give a great big THANK YOU! shout-out to her. Thanks for the nod, friend 🙂 I encourage you to check out her blog at http://www.abodyofhope.wordpress.com

A Liebster Award, as defined by the Internet, is a pat-on-the-back award shared between bloggers in which we congratulate each other on being Awesome. So I’m really glad to get one, and I’m super psyched to pass it on to a few other bloggers that I think are also Awesome:

A Southern Celiac http://www.asouthernceliac.com

Sarcoid Soldier http://www.sarcoidsoldier.wordpress.com

College on Crutches http://www.collegeoncrutches.wordpress.com

You (and my nominator A Body of Hope) are all such an inspiration to me as a Chronic blogger. I love to read about how you are handling your illnesses in addition to all of life’s everyday challenges. Thank you for sharing your stories!

Instructions for presenting a Liebster Nomination:

-Thank the blogger who nominated you. (Check!)

-Post the Liebster Award image on the acceptance post and/or as a widget. (Check!)

-Share any 11 facts/things about yourself. (See below)

-Answer the 11 questions given. (See below)

-Nominate bloggers with fewer than 200 followers. (Check!)

-Compile 11 questions for your nominees. (See below)

-Let your Nominees know by commenting on their blogs. (I’ll do that in a minute!)

Questions to my Nominees:

  • When did you decide to start blogging and why?
  • Who is your favorite author, or do you have a favorite book?
  • Is writing your profession, or do you have a “day job”?
  • How do you feel about sharing your story with the Internet? Is it fun? Nerve racking?
  • Where is the most interesting place your blog has been read?
  • What’s the best comment your blog has received?
  • What was your most-read post? Share the link!
  • What’s your favorite holiday and how do you celebrate it?
  • Do you have any pets?
  • If you were stuck on a desert island and only 5 things were stuck there with you, what would they be and why?

11 things about me:

~I took French in school from kindergarten to junior year of high school (12 years!) and yet I can barely speak it. However, I understand a whole lot of it, and so I have been known to *occassionally* eavesdrop on Frenchie conversations.

~I worked at a fancy soap shop at the mall when I was in high school, and probably spent half my paychecks buying fancy soap (at a great employee discount!) instead of saving them.

~I sometimes think it would be fun to have blue hair.

~Gilmore Girls is my favorite TV show, ever.

~I named my dog, Suki, after the main character’s best friend.

~I love manicures, but I only do them myself, as I distrust the cleanliness of nail spas.

~When I was little, I wanted to be a country music superstar.

~Dolly Parton is still my idol.

~Dollywood is one of my favorite places on Earth.

~I once met Annie Leibovitz, of celebrity photographer fame, and was so nervous I couldn’t speak.

~If I could only eat one food for the rest of my life it would potatoes.

Random. I know.

I think that’s the point.

These are the questions A Body of Hope asked me:

How did you come up with the name of your blog?

I was really tired of the phrase “chronic illness” because it meant so many negative things to me. I wanted to explore what “chronic wellness” might mean to me instead.

What is your chosen spiritual path/religion?

“Keep an open mind, but not so much your brain falls out.” –Groucho Marx

I was raised Catholic, but I feel like the preceding quote pretty much sums up both my spiritual and political viewpoints as an adult. I also like Joel Osteen and whatever brand of spiritual positivity you’d like to define his sermons as.

Does it impact your writing? If yes, how?

Yes. In regards to keeping an open mind, I try really hard not to judge (Anyone or anything. Period.). I try to tell the truth about myself, and my experiences, and I try (really, really hard) to recognize the positive aspects, or even life lessons, wrapped up in those experiences. And then I write about it…

Describe the first time you realized that your writing could influence/challenge others’ thinking:

I would have to say, probably right after my very first blog post. I got such a great response that it just clicked- other people are reading this, they care, and it matters what I say. That is a cool feeling!

Who was a childhood hero of yours?

Dolly Parton. Seriously. I didn’t even realize she sang for like, ever. But my mom had bought me her children’s book The Coat of Many Colors, and I loved it so much that I memorized the whole thing and wore the binding out. When I found out she was Country Music royalty and had a theme park? Let’s just say my mind was blown!

Do you feel your writing is a form of artistic expression?

Absolutely! I love the whole process- from thinking about what to write, all the way to posting and adding pictures to fully convey whatever theme I’m trying to get across.

What was your favorite childhood game?

Candyland. No matter how many times I played, I always picked the Princess Lolly card. She was my favorite!

What’s the most romantic thing you can think of?

I wrote a whole post about it: True Love https://iamchronicallywell.com/2014/08/29/true-love/

What is your favorite quote?

“You can make more friends in two months by becoming interested in other people than you can in two years by trying to get other people interested in you.” –Dale Carnegie

Because it’s true!

How do you define creativity?

Tricky question! I think maybe it’s indefinable. But I know it when I feel it- it’s like my brain is expanding, as though the dusty corners that aren’t in every day use are waking up.

What is the best writing advice you’ve ever received?

Hmmm, this is hard, as I’ve never really had a writing guru to guide me. So I guess perhaps it would be when I told my mom I wanted to write a blog but I wasn’t sure about it, and she said “Oh, you should totally do that!” Thanks, Mom!

Go Out And Read THOR

Get thee to thine nearest comic book store, Chronic readers! For the newest edition of Thor, the one that has had the Internet abuzz for weeks now, has arrived!

What is so special about this edition of Thor?

This Thor happens to be a lady.

IMG_0948

Now, she is not Lady-Thor, or She-Thor, or Thorina, or Thorabella, or any other feminized Thor version. Nope, she’s just plain old Thor, Goddess of Thunder.

Pretty cool, right?

I think so.

I’m not going to rehash the arguments that the Internet has been having (Seriously, man-child readers of comics- Get. A. Flipping. Grip.). Instead, I’m going to encourage you to go out and pick up a copy for one simple reason.

Reading comic books is really fun.

I have always liked Superheroes, though I admit certain Princess-themed things held my attention more when I was little (Does the Little Mermaid count as a superhero? I feel like she totally had the right attitude to be one…you know, until she sold her voice to a sea witch to get a guy to like her. Face. Palm. #GetWithItAriel). When I was in high school, the first X-Men movies came out. I didn’t see the original in the theater, but picked it up on a whim at the Hollywood Video (#So.Old.Iknow) one day when I was sick, yet again.

That movie, simply titled X-Men, was a revelation. Something about it opened up a whole section of my brain; and I have been filling it up with as much hero-themed knowledge as I can get my hands on ever since.

I’m a Marvel girl, and, not to knock this post about Thor, a die-hard Captain America fan. If they ever pass the Cap’ mantle to a lady, my head might explode. Captain Marvel (read the Kelly Sue DeConnick version) is cool and all, but Captain America is kind of the be all and end all of Marvel-dom.

Anyway, Thor, this post is about Thor.

Thor is high up there on my favorites list. If you actually read the comics, which you should, Thor is pretty great, because no matter what story the author is telling, there is a certain style that remains. When Thor is himself, in all his god of Asgard glory, his dialogue is spoken in an Old English dialect and typed in a special font (which WordPress doesn’t seem to want me to share with you…). Even when Thor appears in Avengers or other titles, his dialogue will be written this way. No other hero has such an individualized and consistent shtick. (Sorry, sometimes the only way to describe something is to do it in Yiddish.)

The way comic books work is that pretty much any writer can come along and create an entire storyline with a known title character, and have it exist in a vacuum where only the facts of that storyline count. There is, for instance, a very unfortunate storyline called “Death of Captain America.” That doesn’t mean Cap’ is dead across the board (Thank Odin!), just in that story.

So, in this shiny new Thor story, blond haired, blue-eyed, muscle-man Thor is no longer worthy of wielding his Hammer. Someone, who happens to be female, comes along and is able to lift the Hammer, and so is granted the power of Thor.

This is one of the main reasons that I love Marvel comics so much.

Characters in their universe are usually made, not born, which is an important distinction in my opinion. They have extraordinary circumstances thrust upon them, and it’s what they do in response that makes them heroic (or villainous- the Fantastic Four’s Dr. Doom, anyone?).

With a character like Thor, who was born special (a Norse god of the land of Asgard), it’s important to have a story element that makes him also have to prove his heroism, so that he doesn’t just get all bigheaded when people commend him for lifting cars off of trapped children like it’s nothing (*cough* Superman *cough*).

Thor’s hammer is enchanted with an incantation. Its original version is thus: “Whosoever holds this hammer, if he be worthy, shall possess the power of THOR.”

I have the keychain to prove it (holds my keys, and doubles as an actual hammering utensil- this sucker is solid):

IMG_0953

In the new version, a tiny little adjustment is made:

IMG_0952

If SHE is worthy…

I’m really excited to see how changing Thor’s gender influences the story. Being a god and all, Thor is known as a strong, powerful character. If Tony Stark (IronMan) is the brains of the operation, Thor is the muscle. I hope that they keep that central to the story. Girls, I mean WOMEN, can kick-ass too.

Personally, I’m a big fan of the “You can be what you can see” argument, and I’m glad that I can see this version of Thor. In the same way that the X-Men film woke me up to the superhero wonderfulness I was missing, I feel like a female Thor is going to open up a world of possibilities for female title characters across the board. I, for one, am really looking forward to it!

Plus, check out this incredible artwork:

IMG_0949

LOVE it

Do you have a favorite superhero? Tell me about it, here or on Facebook!

Also, this is my 50th post, and I am so excited! Thanks so much, Chronic readers, for helping me get to this milestone. ❤

Chronic Cooking

Do you love me?
 (I can really move)


Do you love me?
 (I’m in the groove)


Ah, do you love?
 (Do you love me)


Now that I can dance
 (Dance)

Watch me now, oh
 (Work, work)


Ah, work it all baby
 (Work, work)


Well, you’re drivin’ me crazy
 (Work, work)


With a little bit of soul now
 (Work)

I can mash-potato (I can mash-potato)


And I can do the twist
 (I can do the twist)


Now tell me baby
 (Tell me baby)


Mmm, do you like it like this?
 (Do you like it like this?)

-(from Do You Love Me? by The Contours)

Sorry, sorry, hang on a second, let me take my ear buds out.

You see, I’m cooking, and when I cook, I have a tendency to put music on and dance around the kitchen like a nutter-butter (*Nic translation: Nutter-butter= crazy person).

Somehow, it helps me focus.

Cooking is wonderful because it is a multi-sensory experience.

Cooking is horrible because it is a multi-sensory experience.

I have never been a much of a cook, mostly because my multiple food allergies/sensitivities have had a tendency to keep me pretty food-adverse.

The last year or so, though, I’ve been sharpening my kitchen knowledge (so punny!) and working on my ability to, you know, feed myself.

cake

Proof that I cook…it’s an OLD photo though, haha, but the only one I have of me actually in the kitchen! circa 2010

But this multi-sensory issue! Ugh!

I don’t know about you, Chronic readers, but for me, my brain can only handle so much at one time. Smells, instructions to follow, pots and pans of simmering things to watch, trying not to trip on my very curious puppy dog (who always finds a way to be right under my feet)- it’s a bit much!

So what do I do about it?

Well, I used to just curse and burn stuff.

A lot.

Use-all-the-swear-words-in-a-single-sentence

Clearly, that was not a long-term solution.

I have found that in some brilliant, magical and surely explained by scientific study somewhere way, listening to music, loudly, helps.

Incidentally, a whole lot more than using my sailor-esque vocabulary ever did.

Personally, my non-scientific theory on this is that it drowns out excess stimulation.

My brain is particularly talkative, and even though I may be trying to cook something, I am also usually thinking of future blog topics, wondering how long it will take to make my next round of stuffed elephants, debating whether I can still consider myself an environmentalist even though I just never seem to get around to composting…a whole bunch of stuff that is non-cooking related. Add that to all the stuff that’s going on outside of me, and you’ve got one spastic brain that has no idea what it should be doing next.

Yet, when I blast some classic rock-n-roll into that intracranial situation, it becomes the only thing going on up there. Now it’s just me and the Contours, doing the mash-potato while making mashed potatoes.

For me, it has an Adderall-esque effect. I may be all over the place beforehand, but turn up the Frankie Valli & the Four Seasons Pandora radio station, and suddenly I am laser-focused on completing the task of making dinner.

Sigh.

I have to add this to my list of reasons my neighbors must think I am eccentric. We do have lots of windows, and I do go all out. It must be quite the show. Plus, if I decide it’s Billy Joel night, you better believe that I am singing along at the top of my lungs #IKnowAllTheWords #SpoonsMakeGreatMicrophones #It’sAlwaysBillyJoelNight

Ok, so I’ve figured out how to get my brain in order. That’s super helpful. Now I’m actually adding ingredients to my pot instead of just spilling them all over the counter (#IWasThinkingAboutLastWeek’sScandalEpisode).

But I’m kind of tired now.

Isn’t dancing just a pinch counter-intuitive for a POTSie? Doesn’t all that bouncing about make me tachycardic and weird?

Truthfully, yes, sometimes.

Being upright and remaining still and being upright and moving are two different things with their own set of sensations. If I’m just standing still at a countertop cutting vegetables, you may want to go ahead and take over, and maybe check to make sure my fingertips are still attached. That’s because all my blood is hanging out in my feet, and isn’t necessarily making it’s way back up to my brain, at least not in a particularly speedy fashion, the way it should. This will impair my sharp-pointy-object judgment. #POTSproblems

However, if I’m dancing around, moving my arms and legs (To be clear-not super vigorously or anything. Think audience members at the Ellen show, not Dancing with the Stars. I mean, maybe in my head I think I am Julianne Hough, but in reality, not so much!), then my blood is circulating and making its way to all the important places it needs to be- like my brain!

*Nic note: USE CAUTION when cutting anything, dancing or not. I feel like this whole post needs a giant disclaimer every other sentence. Seriously. Gosh.

But still, I’m tired.

This is where chairs come in.

Chairs are very helpful.

My family happens to have an island in our kitchen that houses our stovetop, and there are barstools on the opposite side. I just drag one of those guys over if I need to sit and stir something for a bit. It’s also helpful (and perhaps safer?) to sit while cutting things, which negates that whole section a few paragraphs back.

I recently found a catalogue that sells these little adjustable-height kitchen stools that are on wheels, so you can wheel yourself around the kitchen while cooking. I might need to invest in one of those. Can you imagine the choreography possibilities?

41M9MSE5CQL

Available on Amazon, search “kitchen stool on wheels.”

Moving on.

My brain is on board, my orthostatic issues have been worked out.

What was I doing again?

Oh right, cooking.

What does a POTSie eat for dinner?

Last night I made Stewed Vegetable Gravy, one of my favorite things. Essentially, it’s like a quick cooking stew that you then pour over [red meat] protein. I tend to make the protein separately, as the gravy reheats well, but I have trouble digesting reheated meat (ick!). It’s especially good on hamburgers (toast half a bun, put a hamburger on it, pour gravy all over it…yummm) or mixed with steak cubes. I use stir-fry steak because you can buy it pre-cut at the store and it doesn’t need to cook forever the way stew-meat does.

Here’s the recipe. It was originally from the Rachel Ray magazine, but I have tweaked it since, you know, it’s me.

Ingredients:

2 tablespoons extra-virgin olive oil (EVOO)

6 fingerling potatoes, sliced into small pieces

1 carrot, peeled and chopped

1 or 2 small ribs celery, chopped

1 bay leaf

1 tablespoon tomato paste

2 tablespoons butter (or non-dairy substitute)

2 tablespoons flour

2 cups beef stock

salt and pepper

Instructions:

1) In a large saucepan, heat EVOO over medium heat. Add potatoes, carrot, celery and bay leaf. Season with salt and pepper, cover and cook for 10 minutes. (Stir occasionally to keep vegetables from sticking to the bottom of the pan.)

IMG_0942

I used PURPLE fingerling potatoes. For funsies 🙂

2) When 10 minutes is up, stir in tomato paste. Then, make a well in the center of the vegetables, add the butter and cook till melted. Add the flour. Stir for 1 minute.

3) Add beef stock, bring to a simmer and cook (uncovered) until potatoes are tender, about 5 minutes. Discard the bay leaf.

While this is cooking, make your protein. When both are done, combine and enjoy deliciousness!

IMG_0944

 

Have any yummy and simple recipes you’d like to share, Chronic readers? I’d love to hear from you either here in the comments, or over on my facebook page: http://www.facebook.com/iamchronicallywell

The Great #48!

This is the end of my 16th week writing this blog.

Whew!

Post #48, Chronic Friends!

I’m super excited 🙂

I happened to spend a bit of time going back over my previous blogs (Blogging worst fear: Repeating myself!) and noticed something.

In my post on Monday (Life Hangover, September 30), where I wrote about Planning a Life in spite of illness, I said this:

What is important to me?

Connection. Comfort. Security. Purpose.

This stood out to me mainly because it did NOT say this:

What is important to me?

Survival. Survival. Survival. Survival.

I don’t know when THAT happened, kids, but I am so glad that my mindset is changing.

A survival mindset, where all you can focus on is how to get through the day, is a hallmark of chronic illness. You don’t see it coming, but you feel it, and the next thing you know, your life has changed. Apparently, it is the same coming out of it as it was going in. Sure, I absolutely still have times (days, weeks even, but mostly moments that thankfully pass) when I feel like that, but I can honestly say that when I wrote that bit on Monday, I never once thought of the word “Survival.” It didn’t even come to my attention until this morning. I feel like this change of mind can be traced, at least in part, to writing this blog and receiving such wonderful feedback from all of you.

It’s weird to talk to the Internet.

I’m just going to put that out there.

When I first started, I was actually legitimately afraid of talking to the Internet (See Here Goes Something… June 16). I was afraid the so-called “Trolls” would find me (they haven’t!), or that someday, I would run for political office and wish I hadn’t been so honest (Who knows if this will ever be relevant? Meaning either my blog or my hypothetical bid for Public Servant of the Year, depending on future circumstances).

Instead, very friendly people I previously didn’t know have found me, which is nice, and very friendly people I already knew have been incredibly encouraging and receptive, which is also nice.

So YAY!

16 weeks. That’s pretty much 4 months, give or take a few days (I guess technically, my 4-month-iversary is October 16). I feel like each post I write is my first one, and at the same time, I feel like I’ve been doing this for forever (4 months? That’s it? Whaaaa?)

What’s with the sappy, yet somehow foreboding, intro, you ask?

If this blog had a soundtrack (which I often wish it did) the music would be changing right about now, to let you know something is about to happen…

First off, Chronic readers, EXHALE.

I’m not leading up to some random and surprising mass exit like characters on a series of Downton Abbey.

Promise.

Yet, I am going to be making some changes.

When I started this blog, my mindset was pretty narrow. I really was stuck on Survival. Survival. Survival. Survival. That happens with chronic illness. You can lose yourself so easily in it.

But somewhere down the line, writing this blog turned out to be cheap therapy. Telling the Internet about my chronic illness, especially the parts that I felt were embarrassing or hard to share (read: ALL OF IT) has somehow lessened the fervid emotional charge of all those things.

I am not cured (of physical illness or mental neuroses), however, I am starting to feel better in a way I haven’t before.

Maybe it’s a growing up thing too, but I feel like I’m finally figuring out how to keep my chronic illness from bossing me around so much.

So, drumroll please…time for my announcement…

I will be switching from a Monday, Wednesday, Friday posting schedule to a Tuesday & Thursday schedule.

Womp womp womp.

I can see where that’s maybe not huge announcement material.

h4B1C6EDC

Care to see it from my perspective for a moment?

(Sure you would, that’s why you’ve been reading this thing for 16 weeks, isn’t it?)

Chronic readers will be familiar with the Spoon Theory. Most refer to themselves as Spoonies, no matter how much I try to get “Chronics” to catch on (I concede that once you read the Spoon Theory, you realize that “Spoonie” is a way cooler nickname, plus it comes with a built in mascot-can a spoon be a mascot?- so you know…I give it up to you, Christine Miserandino). The Spoon Theory in its simplest format is thus: the spoons represent your energy for the day. You only get so many spoons. When you spend a spoon (an amount of energy), you don’t get it back, so you need to pay attention to how you spend your spoons. (Chronic people don’t regenerate well…perhaps we should all be drinking Essence of Salamander or something weird like that? *Because they regenerate lost limbs, not because we’re storybook witches. Wait, that was Eye of Newt…never mind…*) For the full version of the Spoon Theory, in all its glory, go here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

spoons

Ok, so what does changing my posting schedule mean to me?

Why it’ll free up a spoon, darlings!

And it just so happens that I have a bunch of things that I’d like to be using it for!

Unfortunately, another ingrained Chronic mindset that I have, but would like to get rid of, is Waiting For the Other Shoe to Drop. I don’t know where the expression came from (I should really Google it…) but it means that when you are conditioned to believe that yuck stuff happens, you continue to believe that yuck stuff is coming for you, even when good stuff is happening all around you.

So, I’m going to do an experiment. I’m going to do what I did 16 weeks ago, and post right here what I want to happen. 16 weeks from now, I’ll check in again and see if it has happened, the way it did this first time. It’ll be our own special version of The Secret, ok, Chronic Readers?

Good stuff that has happened/is happening because of this blog or completely unrelated, that I would like to have continue (a.k.a. What I’ll be using my freshly re-allocated Spoon on):

~I really feel like I’m reconnecting with my friends, and even some family members, and I’ve enjoyed spending more time with them and talking more often ❤

~Writing all the time has made it even more of a habit than it was before and I’m finally getting back to the novel that I started at the beginning of the summer!

~Some lovely readers have expressed interest in my handmade elephants (See the Crafty Chronic (2), August 27) and I have been encouraged to start an Etsy store, just in time for the holidays! I hope to have it up and running in the next couple of weeks.

~I’m still going strong with my exercise routine, and haven’t had to take an extended break in over 10 weeks!

~A few weeks ago, I started a work-study program that I hope will end in an actual legitimate job! It’s a 4-5 month program, so *fingers crossed* that it goes well.

Now, of course, because of previous experience and a whole lot of superstition, I feel like tomorrow I’m going to wake up and have my carefully crafted Jenga-life come crashing down around me, all because I told the Internet about my good stuff. (Clearly, in my mind, I am the Great and Powerful Oz…or something, haha)

However!

And this is an important HOWEVER.

However, I am going to choose to ignore that tug on my brain and instead think that maybe, because I told you all about it, all my good things will continue to remain so. Maybe some of you will even help me keep it that way, whether you know it or not.

So that’s it for today, Chronic Readers. Have a wonderful weekend, and I will see you here on Tuesday, all geared up to tell you about how I’ve spent that extra Spoon 🙂

Girls Who Wear Glasses are Bad-Asses

Glasses are awesome.

Besides the obvious reason of helping me, you know, see, my glasses are a (semi)permanent accessory; a way of further expressing my style.

At least that’s how I see it. (So punny!)

I’ve always loved glasses.

Our initial appointment with an ophthalmologist was intended only for my older sister; however, when I heard that she might get to have glasses, I may have slightly exaggerated the amount I was squinting to see my own classroom chalkboard.

(Because we had chalkboards back then, kiddos. The first whiteboard didn’t show up with its dry-erase markers until I was in 8th grade. I’m pretty sure I was done with school before this whole “smartboard” nonsense started.)

Really, only slightly.

I probably could have gone another 6 months without my eye sight bothering me, but I wanted glasses toooooooo.

And glasses I got.

My first pair:

Scanned Image

This is either where you say, “Awww!” as in I was so cute, or “Awww!” as in at least you grew into yourself eventually, kid (see picture below)

Please don’t laugh, darlings. These were the greatest thing ever to second-grade me. I was the first kid to get glasses (that I remember) and so for about five seconds those blue-green frames bought me some street cred. Kids didn’t start to be meanies until about 4th grade, so I was safe for a while.

Oh, but then! How I hated those bright, gem-colored frames!

It was too late to go back now, though. My hereditary near-sighted-ness was setting in fast. There was no escape.

Turning 14 was a big deal for me, in that in addition to a life-altering medical condition accelerating my maturity level, my parents finally agreed to let me try contacts. At the time it was the best thing ever. I had recently discovered neon eye shadow, and nothing puts a damper on Day-Glo like glasses obstructing the effect.

I wore contacts all through high school, only using my glasses on lazy days where I was too tired to bother. It’s funny because by high school, nearly everyone is wearing some sort of corrective lenses or has reading glasses. And yet we all hide it! If one of my friends wore her glasses to school, the rest of us knew to watch out, she’s either sick, exhausted, or has been crying over her no-good boyfriend all night.

If only we had realized how awesome we could look! The number of styles and colors and shapes is astounding. Now, of course, you can get great deals online, so it’s not such an investment to have a pair anymore which means so.many.options. I now know two people who have bright purple pairs, and they are so fun!

Post-high school, my glasses and I got reacquainted because a rather annoying symptom of POTS is an inability to retain water. Your body kind of needs water to make things like tears, which lubricate those pretty little windows to your soul. If your eyeballs are raisins, you do not, I repeat, Do Not, want to be sticking tiny pieces of non-breathable plastic into them. It will get stuck. It will hurt. You will have to use half a bottle of eye drops to loosen and safely remove that sucker. Sounds like maybe I know from experience, yes?

So my glasses and I started spending more quality time together out of necessity, so what? Its not the Why that matters, Chronic readers.

My glasses Renaissance/epiphany (contacts=hurt, glasses=no hurt) luckily coincided with the popularity rise of the “Hipster.”

Hipster: a person who follows the latest trends and fashions.

(This is the simplest definition I could find. In true hipster fashion, even their definition of themselves is a never-ending manifesto)

Hipsters gave rise to this look:

b052088f58bea2c2e29555ce80ca7b6e

Starting them early. Couldn’t help it, this kid is a hipster example, and totally adorable!

Suddenly, everyone wants glasses! Glasses make you look smart! Looking smart is really cool! Five Below sells plastic frames, either with clear lenses or even completely lens-less (which is kind of weird, just sayin’).

When I went to my annual exam last year, my ophthalmologist asked if I wanted to try contacts again. My tear ducts are starting to remember that they are supposed to be functioning, and with new “breathable” materials available, I might be able to find a (semi)comfortable pair. I said I’d think about it, and headed over to Costco post-appointment to peruse some frames.

I happened to find my current pair, and I fell in love. Contacts can wait.

IMG_0635

The optometrist who completed my glasses order asked if I was a “hipster” and laughed. I was a tiny bit offended. I felt a tiny bit like I was selling-out, using my near-blindness to buy me a little piece of a pop culture “in”.

And then I got over it.

Because I think my glasses are great for me.

Plus, the fact that they are thick and plastic happens to hide the fact that my lenses are a quarter-inch thick.

(Without them, the world is one big Impressionist painting, my friends!)

Is it an added bonus that the Little Mermaid and I apparently have the same taste in eyewear? Most definitely.

Hipster-Ariel-clear

But even if all the Hipsters move on to something else, and glasses go out of vogue, I think I’ll still stick with my frames.

After all, one would think that having four eyes is better than two, n’est pas?

 

For your viewing pleasure, please watch this clip of Hipster Disney princesses singing about their Hipster-ness. It makes me giggle so much and I hope it will do the same for you: https://www.youtube.com/watch?v=1yPfmRoSfpA Also, I just realized that this clip happens to be 2 years old today, which means that you’ve probably already seen/heard about it, if in fact, you are a Hipster. Therefore, I will hereby market it as vintage so that perhaps, you might watch it again.

Some of my favorite celebrities and characters who wear glasses: Tina Fey, Stephen Colbert, Rachel Maddow, Brad Pitt, Johnny Depp, Zooey Deschanel, Harry Potter (duh!), Marilyn Monroe’s character in How to Marry a Millionaire, Clark Kent (Superman!), Rachel Leigh Cook in She’s All That (she could have totally worn those quirky frames to prom!), Velma in ScoobyDoo, Mia Thermopolis pre-makeover in The Princess Diaries, Abigail Breslin with her grandma frames in Little Miss Sunshine, and Ralphie in a Christmas Story.