Memorial Day Weekend

Remember when I said people who run love to talk about how they run? (https://iamchronicallywell.com/2015/05/07/the-cult-of-running/)

And how I said I was one of those people now?

Last week I was super excited to tell you about how I met my goal of reaching a mile in under 15 minutes doing my run/walk intervals. (https://iamchronicallywell.com/2015/05/21/gangsters-i-mean-runners-paradise/)

This week I am super excited to tell you that for the first time ever, I ran outside and not on a treadmill!

My family has a condo at the beach in New Jersey (yay NJ beaches!) and we went up for Memorial Day weekend.

Now usually, I am not a fan of the Holiday Weekend. People are everywhere, and they tend to be kind of crazy. It’s like in taking a holiday from their everyday lives they also decide to take a holiday from being human. I actually saw someone videotaping themselves using a selfie stick and an iphone as they biked down the middle of the road. Like with cars and stuff.

In general, I don’t like loud and I don’t like pushy.

NJ beaches on holiday weekends are loud and pushy. (Also kind of anytime? Except when they play the National Anthem at 11 am every day on the boardwalk. Then it’s eerily quiet- as it should be #Respect)

Part of me was like, “That’s it, I’m just going to stay inside all weekend, whatever, I can see the ocean from my house, I’m good.”

But another part of me was like, “Girl, you are a runner now. Get out there and run.”

So I did.

My very friendly non-running mom rented a bike and came with me. The super nice bike rental lady wanted to know why I didn’t want a bike too.

My mom said, “Oh, she runs.”

Nice bike lady said (standard non-runner response), “Why would you want to do that?”

To which I replied, “Because I can.”

Which made my mom laugh super hard, which made me laugh super hard, which made the nice bike lady look at us like we were nuts. It was probably a mix of insane universe-gratitude, relief, and comic hysteria, because yeah, I can run now.

We set off, and half an hour later had made it to the local library and back, a neat 1.2 miles. We capped it off with a 1 mile walk down the boardwalk, just for funsies.

Here’s what did not happen on this excursion (all of which I totally thought was absolutely going to happen):

~I did not polymorphous light erupt (see What’s POTS in the sidebar).

~I did not throw up.

~I did not have to use the icky porta potty.

~I did not faint.

~I did not trip and fall on my face.

~I did not get run over by crazy Memorial Day weekend bike riders. (This was touch and go for a minute. Who knew drinking and biking was a thing? #ShouldNOTBeAThing)

~Emergency vehicles and their workers did not make an appearance at all, in any capacity, during this time period.

Here’s what did happen on this excursion:

~I remembered to breathe.

~I remembered to pace myself.

~I switched from walking to running based on how I felt (I ditched the podcast for this one).

~I went further than I thought I could.

~I went on to have a perfectly normal day afterwards. No crashing and burning.

~I did a happy dance in the elevator on our way back to the condo.

YAY!

Now, just to let you in on a little secret, this did not just magically occur. First off, there was the 8 months that I have been inching my way up to this point #Progress. As for the day itself, when it comes to planning, I am a grade-A overworrier. I err on the side of being overprepared. I get it- someday I will get to the place where I do not need to load up like a pack mule just to run a mile. Someday, it will really just be me and my running shoes out on an open road. But for now…

This is what I had with me and/or wore:

~A hat.

~A long sleeve shirt.

~Long pants. (Thank goodness it was only 70 degrees Fahrenheit. Not sure how I will handle this once it’s warmer. #AllergicToTheSun #HidingFromSunlight)

~Running shoes.

~Armband cell phone holder.

~One eared headphones (headphone?) so I could listen to music and be aware of my surroundings at the same time. (Highly recommend this- look on Amazon.)

~Water bottle “tool belt” containing 3 bottles of water and 1 bottle of Gatorade (7oz./bottle), I.D., dried fruit bar, and tissues (my nose runs when I run…it’s jealous of my legs? #BadJoke).

~Condo keys on a bungee cord on my wrist.

Even with all that, I still felt like I was forgetting something. I carried nothing that would prove useful if say, an unplanned tsunami hit. Though the water bottle tool belt *might* double as a floatation device if I needed it to.

You know what, laugh all you want, I totally do not mind being this guy:

 

My mom asked if it was hard to run with all that stuff.

I actually didn’t notice? I was too busy jumping up and down in my head.

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What did you do this Memorial Day weekend? Do you have big plans for the summer? I’d love to hear all about it!

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The Girl Who Cried “Success!”

I tend to get excited about new (to me) treatment options.

How could one not?

This pill will help me retain fluid. That will be so helpful! I may not have to go to the bathroom 900 times a day! My blood pressure will finally increase!

Except… retaining water meant I ended up with uncomfortable bloating and severe migraine headaches that kept me confined to bed.

This injection will cause my red blood cell count to be higher- and since I’m anemic, that’s going to be so great because I will finally have enough blood to circulate through my system!

Except that getting shot in the rear with bee-sting-like intensity 3 times a week for 4 weeks is 1) painful 2) expense because my insurance didn’t cover it. Add in the fact that while I may have had more blood circulating, my iron levels plummeted, so I had to take high dose (liquid!) iron supplements that made my digestive system tie up in knots so badly that it triggered gastroparesis (literally paralysis of the gastric system) and I ended up only able to eat blended food for an entire year. Plus, once the injections stopped, so did the overzealous red blood cell production.

There have been other pills, other “lifestyle” changes that I have tried throughout the years, and let me tell you, I was excited about each and every one.

Well, ok, back up a minute, I was excited about what each and every one promised.

So, of course, I told everyone about it.

“I’m trying this new thing, and it’s supposed to help!” I proudly proclaimed.

“Yay for you!” my lovely support system replied.

Most of the time, the New Thing does/did help. It’s just that usually, it helps for approximately 5-10 days, and then stops.

It feels like this:

New Thing introduced.

Body is too confused (and let’s face it, slow) to figure out what’s happening.

New Thing does what it is supposed to. Happiness ensues. Phone calls are made, Facebook statuses and blog posts of joy are written.

Time passes.

Body catches on that New Thing is not going away anytime soon.

Body FLIPS THE FREAK OUT.

Body rejects New Thing.

New Thing is overpowered by side effects and triggered responses of Body.

Nic cries.

(A lot.)

New Thing is stopped.

Depending on how severe Body freaked out, return to Previous Normal might not be possible, and so New Thing #2, 3, 4, 5, 6 might need to be introduced to clean up the mess.

Or, Nic might just need to sit on the couch for a week watching TV shows on Netflix while waiting for Body to remember how to function on a slightly normal/manageable level.

New Normal achieved. Nic marches on.

I hope you see where I am going with this…my new beta blocker did not work out.

It’s really frustrating to be in it- to go through the hope-happiness-disappointment-frustration cycle yourself- but it’s also weird to see other people react to the situation.

It’s as if I am crying Wolf or something…

It’s as if I am crying Success.

Unlike the Little Boy who Cried Wolf (Not up-to-date on your nursery rhymes? Google it.), I do not cry Success for attention. I cry Success because for a moment I actually feel it, and I’m bursting with how good it feels, and I want to tell everyone how happy I am.

But when Success doesn’t last long, and a few months later I come back with some other New Thing and repeat the whole kit-and-kaboodle again, I can see how some people (not you, of course) might get a little tired of it.

Let me tell you something.

I’m never going to get tired of it.

The other Chronics you know, who go through a similar process, are never going to get tired of it.

Not because it’s a game and we’re trying to pull a fast one on unsuspecting support systems. We are not messing with you, promise.

It’s just that to us, each New Thing is so much more than just a new thing…

It’s Hope.

If we ever stop getting excited, if we ever stop talking about our process of progress-setback-progress, that is when we have a problem.

That’s when you know we’ve given up.

A lot of times, New Things bring a Louis Vuitton matching set of Baggage with them. A lot of times, it is not worth it to have one thing go right when it triggers everything else to go wrong. No one likes a Health Hydra (see previous post).

You may not get this.

You may not understand why the Chronic in front of you “gave up” so easily/quickly/etc.

This is the part where I politely pat you on the head, give you a cookie, and tell you that you don’t have to understand everything.

Each New Thing is a learning experience for a Chronic. Even if it didn’t go right, there is definitely something to be gained for having tried.

For instance, having tried this particular beta blocker, I now know that if I want to function (at all) then it is more important for my blood pressure to be regulated than for my heart rate to be low. I like functioning more than I like a quiet thoracic cavity, so I chose not to continue the beta blocker (which caused my blood pressure to tank after it had built up in my system- 85/50? Not happening).

That’s the other thing: I chose.

Sure, when you are a Baby Chronic, your parents are still in charge of your medical decisions, and so have some measure over what your treatment options will be.

But once you’re 18, it’s your turn.

You get to decide that you don’t want to “wait it out” or “see what happens”. You can say, “Nope, this is no good for me!” just as soon as you need to.

I am bummed (so, so, so bummed) that this particular New Thing did not produce results that were compatible with my system long-term. The shiny promise of it was so appealing! Plus, it’s a real inconvenience to be so life-interrupted. It took 2 weeks of taking it to know it wasn’t for me, and then 1 week to get it out of my system. In a few more days, I’m sure I will lament the loss of February as much as I lamented the speed at which January flew by.

But <stuff> happens sometimes.

It was better to try this out, see if it helped, and learn a couple of things than to not know at all.

And if that’s not a reason to cry “Success!” then I don’t know what is.

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.

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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!).

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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.

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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.

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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!

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.

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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:

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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.

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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.

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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.

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“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!).

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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.

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

Terribly sorry, Mom/Nick Fury…

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“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.

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#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 🙂

Life Hangover

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Good news, Friends: I didn’t succumb to the Black Plague this weekend! Woohoo!

Instead, I was able to go to my friend’s wedding and it was beautiful and wonderful and so, so lovely. I was so thrilled to be there with her on her special day ❤

Cue this morning.

I’m feeling a tad hungover, but don’t worry Mom, or hyper-concerned readers, I wasn’t sampling the bubbly. I know better than to mix downers (beta blockers) with more downers (alcohol).

Nope, this is the result of some serious Uppers—

Smiling. Hugging. Dancing. Chit-chatting. Picture Taking.

A wonderful cocktail if you ask me.

Yep, this hangover is a life hangover, as in, I was living a lot yesterday and therefore today is a bit cloudy, a bit headachey, and a bit like I’m underwater and everyone else isn’t (and keeps trying to talk to me from up there…I can barely understand you…you need to just…yeah, just try again later…).

Does this happen to you, Chronics?

I feel like it does.

The weird phenomenon of chronic illness is that anything that requires energy is bound to suck the life out of us. Period.

So if that’s going to happen anyway, I’m going to go ahead and choose to go out on a positive note.

I love the quote above. Its instructions are so simple:

Understand + Plan = Healthy Decision.

Could it really be that easy?

Yes and no (of course).

Understanding can take a long time. I have been a Chronic for 12 years, and I am only just figuring out how to figure stuff out (it’s about as confusing as that sentence…).

I feel like this piece of the puzzle is the one that you have to learn yourself. A doctor can make helpful suggestions, but he/she’s not going to know that you feel better when you’ve eaten a protein-heavy breakfast or that comfy shoes are a must because if you set off the myalgia-ed fibrous (translation: pain-ed tissues) in your feet it’s only a matter of time before the rest of you is creaking worse than Grandma Pearl.

Step 1: Pay attention to yourself. Get to know your symptoms. Sure, you too might have POTS, but how it affects you is most likely a little different than it affects me. Make sure to note if anything makes you feel better, in addition to what makes you feel worse.

Step 2: Planning is either really easy or really hard, depending on your personality and circumstances. I find that it’s easier to think in really broad terms here, with specifics coming into play later.

Example: Planning a Life

What is important to me?

Connection. Comfort. Security. Purpose.

How can I make Connections?

Friends. Family. This blog.

What are some ways I can make Friends a Priority in my Life?

Go to their wedding. Hug them. Tell them you love them.

What will it take for me to be as comfortable as possible at their wedding?

*Here it’s helpful to make a list of all those symptoms you are learning to understand and then make a coordinating list of how you can deal with them in <WhateverSituation> you are in.

Boom!

Life!

Lather, Rinse, Repeat with all the categories that are important to you. When it comes down to it, Life is really based on a series of things that fill emotional needs. If you figure out those needs (mine being connection, comfort, security, purpose), then you will come to find that there is a multitude of ways to meet those needs. This can help keep expectations and accompanying disappointment in check, because it’s hard to run out of options when you are looking to be “happy” as opposed to when you are looking to “run the Iron Man marathon next Saturday with a time of 12 minutes (#MadeUp #Impossible) without setting off my heart symptoms.”

Let’s come full circle now, Chronics, and swing back to hangovers.

If you google “hangover remedy,” about 9 million things pop up. Good to know, but I probably won’t be using any of them any time soon. (Pickle juice? Really?)

The way to heal a Life Hangover is this:

1) Be kind to yourself (and give yourself a pat on the back because putting yourself <OutThere> is hard!)

and

2) Make plans for more living!

Because, really, isn’t that what Life is all about?

Tell me about your Life Hangovers, Chronic Readers, here in the comments or over on my Facebook page: http://www.facebook.com/iamchronicallywell I’d love to connect with you 🙂