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 🙂

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Rest Day

You guys.

My step-dad has been sick this week.

He thinks he had the sniffles with a side of mind-numbing headache.

Personally, I think he had the Black Plague.

This was me this week:

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My rather sluggish immune system has put up a valiant fight, and coupled with my overzealous use of Lysol, I have not gotten sick!

However, I am so tired.

So very, very tired.

In order to make sure that I am back in fighting-form this weekend (I have Very Important Plans that involve a Friend and her Wedding ❤ ) I am suspending all usual activities in favor of sleep.

MjAxMy1hOTE4ZjNlNzI1Nzg3ZGQwMy recumbent bike, my sweet doggie’s extended walk, and this blog fall under the category of “usual activities.”

So have a happy weekend, Chronic Readers, and send good vibes my way that my immune system keeps up the good fight against any lingering germiness. I will see you all on Monday! 🙂

 

I’m FALLING for you!

Fall is upon us, Chronics!

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Oh, no, I’m sorry, I was talking about Autumn.

You know, the season?

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But yes, it is the falling down time of year again, too, friends, and it’s not just for leaves anymore!

Something that they don’t tell you when you are first diagnosed as a Chronic is that all of a sudden, simple things like the weather changing (whether from a sunny day to rain clouds, or a seasonal change from summer to fall, or winter to spring) will mess with you and your symptoms. It has to do with all sorts of complicated stuff like atmospheric pressure and barometric pressure, and perhaps one more kind of pressure that I am possibly forgetting…

I wrote a post about the weather phenomenon this summer, so if you’re interested go all the way back to June 27 and read My Perfect Date.

A friend had commented on that posting that this is one of the hardest things to explain to her non-Chronic friends, as saying that her symptoms are dependent on the weather made her feel kind of loony, as though she was “wired to the moon.”

I would like to take a moment and let you know that while we Chronics kind of are wired to that big piece of cheese out there in the sky, being so wired does NOT mean that we are this guy:

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Promise.

ANYWAY.

Now, in the sweet present moment of the Northern Hemisphere, we are welcoming Autumn into our midst, and with it, an uptick in our yuck feelings.

After reading my post about the Red Band Society (Friday’s post- Septemeber 19), a very sweet friend of mine posted this on my personal Facebook wall:

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It couldn’t be more true!

Personally, while I’ve been feeling like my chest cavity is caving in the last few days (or that my recently completed herd of pachyderm friends-see The Crafty Chronic (2)- is sitting on my lungs) I’m still going strong with my number of “Days Conscious” since my black-out spells this summer (Can I get a round of applause for the return of the Beta Blocker? Apparently we are friends now- and not just friends, but super besties) but I have heard from a number of my POTSie friends that that strong wind that blew in from the North knocked them out in addition to any lingering summer humidity. Ew.

Fall doesn’t just bring misery though, my dears. No! It also brings wonderful things back into the world, like beautiful multi-colored foliage on trees, fuzzy sweaters, warm drinks and pumpkin spice-flavored everything. (Really. Everything. Gluten-free Cinnamon Chex is now advertising pumpkin spice flavored recipes on the box, so that you can get your fix…and settle into a fall-sugar-coma completely unrelated to chronic illness.)

I’m trying my best to ignore the Falling Down part of Fall and focus on the fun stuff. My favorite Fall things include:

~Apples: Apple picking, apple cider, apple cake, apple pie…All of it. Yummmm.

~Pumpkins: Not just the overzealous implosion of baked goods and warm drinks, but actual pumpkins. And pumpkin patches. I love to make jack-o-lanterns and have pumpkins out on the front porch. I always get a white pumpkin too- they are an interesting way to mix up your “harvest”-themed décor.

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~Sweaters: As someone whose internal thermometer is always set to “sweating,” I am uncomfortable 75% of the year. Not in fall! I’m actually a pinch chilly and can wear a cozy confection without overheating. Yay!

~Candy Corn: Ok, I am being all Dunkin’ Donuts here and jumping the gun on Halloween candy, but come on. Candy corn is amazing. It’s a weirdly waxy, sugary delight whose identity is tied up in fall. I have a rule, though. I only eat candy corn in October, so as not to ruin the holiday spirit of it (I don’t eat candy canes outside of December either #FoodWeirdo #ItsHolidayCandy #EatItOnAHoliday #NotInJune). Lucky for me October is only 6 days away.

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Always spring for the Harvest Mix- it’s got the little pumpkins in it too!

~Crisp-ness: Is this a thing? I’m making it a thing. Everything is crisp in fall- the air, the leaves- and it’s wonderful.

~The return of good TV: I can’t help it. I try to pretend I don’t watch that much TV, and I really don’t…unless it’s Thursday and I’m sedentary for 3 hours straight while Shonda Rhimes blows my mind. I can’t wait for her new show with Viola Davis! (And PS, I didn’t end up getting that cape coat from the Limited Scandal collection I was talking about last week- that lovely, honey-plaid drape of wonder was $228. Which buys a lot of Midodrine, so you know, priorities.)

What are you looking forward to this Fall, Chronic readers? Are you feeling the fall more so than the autumnal spirit? Let me know in the comments here or on my Facebook page!

Go out and read this! Banned Books edition

Happy Banned Books Week, Chronic readers!

Yes, there is such a thing.

Every year, the American Library Association teams up with the Office for Intellectual Freedom to provide the public with a list of books that are frequently “challenged,” whatever that means.

Then, of course, they encourage the public to go out and read said “challenged” material in an effort to raise awareness of, and combat, intellectual censorship.

As I happen to be a big fan of access to information, I’m going to go ahead and perpetuate the reading of so-called “banned” material by posting the most current list. This way, we can all feel a little bit radical and delinquent together (because, really, has anyone not read the Hunger Games? Do we get a double dose of delinquency if we’ve seen the movies too?).

Without further ado, the List for 2013 (this year’s data is still being collected):

Out of 307 challenges as reported by the Office for Intellectual Freedom.

Captain Underpants (series), by Dav Pilkey
Reasons: Offensive language, unsuited for age group, violence

The Bluest Eye, by Toni Morrison
Reasons: Offensive language, sexually explicit, unsuited to age group, violence

The Absolutely True Diary of a Part-Time Indian, by Sherman Alexie
Reasons: Drugs/alcohol/smoking, offensive language, racism, sexually explicit, unsuited to age group

Fifty Shades of Grey, by E.L. James
Reasons: Nudity, offensive language, religious viewpoint, sexually explicit, unsuited to age group

The Hunger Games, by Suzanne Collins
Reasons: Religious viewpoint, unsuited to age group

A Bad Boy Can Be Good for A Girl, by Tanya Lee Stone
Reasons: Drugs/alcohol/smoking, nudity, offensive language, sexually explicit

Looking for Alaska, by John Green
Reasons: Drugs/alcohol/smoking, sexually explicit, unsuited to age group

The Perks of Being a Wallflower, by Stephen Chbosky
Reasons: drugs/alcohol/smoking, homosexuality, sexually explicit, unsuited to age group

Bless Me Ultima, by Rudolfo Anaya
Reasons: Occult/Satanism, offensive language, religious viewpoint, sexually explicit

Bone (series), by Jeff Smith
Reasons: Political viewpoint, racism, violence

Have you read any of these, Chronics? Do you find them “ban-able”?

You can see previous years’ lists at: http://www.ala.org/bbooks/frequentlychallengedbooks/top10#2013

Some Classic Banned Books include the following:

  1. The Great Gatsby, by F. Scott Fitzgerald
  2. The Catcher in the Rye, by J.D. Salinger
  3. The Grapes of Wrath, by John Steinbeck
  4. To Kill a Mockingbird, by Harper Lee
  5. The Color Purple, by Alice Walker
  6. Ulysses, by James Joyce
  7. Beloved, by Toni Morrison
  8. The Lord of the Flies, by William Golding
  9. 1984, by George Orwell
  10. Of Mice and Men, John Steinbeck

This co-incidentally was also my high school English class required reading list.

Do you have a favorite Banned Book?

My favorite Banned Book is actually a series- the Alice series by Phyllis Reynolds Naylor. This wonderful series is filled to the brim with thematic elements such as growing up, dating, family and friend relationships, and living in a Maryland suburb. I highly recommend it.

Have fun reading, Chronic friends, and don’t forget to leave a comment here or on my Facebook page letting me know what you think!

Red Band Society Member? Not so much…

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I, like many a Chronic, get excited whenever I hear that a story that <MayPossiblyKindaSorta> sounds like mine will be featured on TV. So, when I heard that the Fox network was developing a show that some critics were touting as “Glee in a hospital,” I thought, Yay! I will definitely be watching that. Red Band Society? Sign me up.

Then, in last weekend’s Washington Post Opinions page, I read an article, coincidentally written by a young woman with POTS, that changed my mind about my excitement. Pretty soon, this article was popping up on my Facebook newsfeed, and I even shared it myself (go to www.facebook.com/iamchronicallywell to see).

Lillie Lainoff very eloquently points out that not all press is good press.

As Lainoff notes the obvious in her article, I’m not going to focus on that here. We all know that television hospitals are a) way nicer than anything in real life, b) stocked with good looking doctors and tough-love nurses who stick you with a needle for your own good but make up for it with pizza later, and c) full of strangely well-looking sick people.

It’s unrealistic. We get it.

Lainoff continues, making some valid points about how this year, young adult media (books, movies, and now TV shows) has really taken glorifying illness to new heights, and that that upsets her. She also implies that she’s conflicted about this, because of course, as Chronics, we are taught to believe that if we just keep a positive attitude, we can overcome all odds.

Tricky. I agree.

Where does The Red Band Society fit in to all of this?

Now that I’ve watched it, I feel that I share some of Lillie Lainoff’s frustrations, most notably about that end line, “Everyone thinks that when you go to a hospital, life stops. But it’s just the opposite. Life starts.” It’s just the kind of cheesy, mushy, emotional line that hooks some people and turns off the rest. Everyone wants to feel like if they had something life-altering to deal with, they would be able to handle it, and even go the extra mile of smiling while doing so. That’s good, but is this show going to be following the other 360 days of these patients’ lives when that smile is hard to come by?

Here’s the thing: as a Chronic, I felt like ok, this show is unrealistic, and the “illness” part is vastly underplayed. I was bummed that they only had the “standard” TV illnesses portrayed- cancer, eating disorder, vague-unexplained heart problem (*Nic note: To be super clear, I am NOT comparing or attaching any “value” to one type of illness over another. I hate it when that happens. I really just mean that TV only seems to be comfortable portraying these types of illnesses). I guess it would be hard to follow Chronic-illness patients who pop in and out every few weeks for a tune-up.

I said, hard, TV producer people, not impossible.

But whatever.

As a regular old person who watches TV, did I like this show?

I felt like there were a lot of times I sighed heavily for non-illness related reasons.

Like, really, they made the cheerleader a witch? Wow, that’s original. She has a heart problem and the sassy nurse wonders out loud if she even has one? Low blow, and again, I’ve got a bad case of déjà vu. The plan that the kids have for a party is foiled by a no-fun surgeon, but a well-meaning adult who has no fear of facing jail time for serving alcohol to minors shows up in the knick of time to set up a party on the roof? The formulaic set up of this show is what really irks me. And come on, the helipad is not going to be in use all night so that a group of kids can have a bonfire and play guitar? That is a bad case of unrealistic right there, my friends.

When I am judging a new show and debating whether or not I’m going to commit to it, I tend to give it three episodes, assuming that the first one was bearable. My rule of thumb is that the pilot is almost always going to be completely different than the show as a whole (don’t believe me? Watch the pilot of Friends), the second is almost always better, but the third one will tell you where this crazy train is headed.

Will I give The Red Band Society three episodes?

Eh.

Two? Sure.

But by then, my favorite unrealistic medical drama, Grey’s Anatomy, will be back on, and I can get my fix with characters I’ve previously invested in.

In case you’re interested, The Red Band Society airs Wednesdays on FOX at 9/8c.

In case you’re Octavia Spencer, Darling, you can do better than a show that calls you a “scary bitch” on a billboard.

In case you’re a writer for this show: Can you please make a statement taking back your opening line that Cheerleading doesn’t matter? I am so very, very tired of people pretending that Cheer is a “less than” sport or even not a sport at all. Why does Cheer not matter but Soccer does (to the boy with cancer?)? If you want to imply that extra-curriculars don’t matter, could you keep it consistent throughout your episode, please? Ok, thanks.

Sniff, sniff, twitch, twitch

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I am usually better about submitting my latest blog post closer to noon Eastern Standard Time. Not today! I have good reason, promise. Aren’t all reasons good? I’m sorry to my international readers who gave up on waiting around for me and are sound asleep. I’ll still be here tomorrow, friends, you can catch up then!

Ok, Wednesday…

Wednesday blog post…

Yep, ok…

Here we go…

I love me some magazines, Chronics. September is the month for fashion, and therefore for fashion magazines.

In case you don’t know, that’s because it is Fashion Week in New York City. Fashion Week technically occurs twice a year, the other time being in February/March, but really, September is the be all and end all. This is when the true life versions of Meryl Streep’s character in The Devil Wears Prada tell us all what to wear next year.

imagesNow, I know from experience to be very careful about how much I listen to other people telling me how to dress (really, by now you should have read That Time I Let Sigourney Weaver Tell Me What To Do, July 30, because I reference it so often I’m surprised I’ve yet to receive a Cease and Desist order from her People). As such, I’m not going to be wearing anything that Kim Kardashian would, even if Anna Wintour tells me it’s the <BestThingEver>. #IStillDontGetThatFriendship

kim-kardashian-and-anna-wintour_detailOh, but do I love to look!

I confess, I am a clothes ogler.

Because have you seen the previews of the Scandal collection that is coming to The Limited? Those coats? <OhMyOliviaPope> I want a cape coat so much. I am quite sure I will be making some poor financial decisions come the 23rd (it’s official debut date).

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Or I won’t. Because I kinda need blood pressure meds more than I need a Kerry Washington approved wardrobe.

It is a REALLY close call though.

ANYWAY.

So there I was, going about my clothes ogling business, perusing the latest InStyle, when suddenly, my eye started to twitch.

This happens, sometimes.

I promise it has nothing to do with over-exposure to Ralph Lauren (I. Freaking. Love. Ralph. Lauren.). Unless…

Yep, Ralph Lauren is on the list of Offenders.

What kind of Offender?

The overzealous Perfume Sample kind.

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From ONE Magazine

Listen, I love that Ralph (we are on a first name basis, I’ve decided) uses an actual Polo player to hawk his Polo cologne. That’s pretty cool, Friend, way to stay true to your roots. However, I do not need to know what this Polo player ostensibly smells like pre-match, especially in such a strong way that even after I wash my hands post-Perfume Sample handling, I can still detect a trace of it on my fingertips.

I mean, maybe, some people like that sort of thing.

I, however, don’t particularly care for eye twitching, so I will be updating my subscription to “No Perfume Samples,” which you can adjust on most magazine websites.

Chemical sensitivities are a real thing, and I bet if you are a Chronic (and even if you aren’t!) there is some chemical somewhere that causes your neurological system to freak out <JustATinyBit>.

Perfume Samples are enemy #1 to me, as are their related counter-part, the Heavily Perfumed Person. I mean this in all seriousness- sometimes I will choose the longer grocery store line if it means that I won’t get trapped in close quarters with an overzealous user, even if it means more time in an upright, and therefore POTS-unfriendly, position. Male or female, apparently Heavy Perfume is not just for Great-Aunt Betsy anymore.

I also have trouble with household cleaners. I am very specific about what I use to clean. I haven’t yet gone so far as to Martha Stewart the place with vinegar and baking soda, eschewing all chemicals for all eternity, but I’ve thought about it. Then I think I don’t want my house smelling like somebody’s third grade science volcano, so I err on the side of chemicals I know don’t freak my system out. Preferably the lemon scented ones.

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Vinegar + Baking Soda = A+ in Science and Cleaning!

This is how severe my chemical cleaner intolerance is: there is a popular, very long road in my area where a whole bunch of stores are situated. I can comfortably shop from Whole Foods to Target, and then from Bed, Bath, and Beyond up to the Movie Theater. However, I can’t go into the stores located between Giant and Bed, Bath and Beyond (sorry, readers who aren’t familiar with my geographical location, I promise this makes sense to some people). They are all cleaned by the same company, and when I walk into Trader Joe’s, TJ Maxx or Five Below, I immediately break out in hives and feel like it’s hard to breathe. Yuck.

I have to go all the way to <ADifferentTown> to fulfill my Maxxinista needs. Double Yuck.

I feel like chemicals are getting a lot of press these days, as we are in the age of realizing that everything that made life easier for our parents and grandparents is now going to slowly and painfully kill the rest of us. Just as I’ve had to learn to reign in my fervent passion for Cynthia Rowley jersey knit dresses, I’ve had to learn to tone down the fanaticism with which I approach health information.

Ok, so my lemon scented bathroom cleaner was probably created in a science lab. But it happens to be a science lab that is appears to be compatible with my neurological systems as far as I know, so I’m not going to hold it against them right now. And if I happen to grow webbing between my toes as a result of my feet touching a surface cleaned with that product, well perhaps it will make me a better swimmer.

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I know it might seem hypocritical for me to be cranky about <OneSet> of cleaners (Lavender scent, you are the devil!) and not another.

Chemicals are chemicals, right?

Maybe.

I’m choosing to pick my battles. Sometimes you just can’t over-think things.

…Like that cape coat. I’m totally getting one.

 

Are you chemically sensitive, Chronic reader? Tell me all about your chemical pet peeves in the Comments or over on my Facebook page: www.facebook.com/iamchronicallywell

Go out and read this!

Here’s to a new recurring-topic post! Go Out and Read This is pretty self explanatory. I’ll post about a book or article that I like and try not to sound too much like I’m presenting an elementary school book report while encouraging you to, you guessed it, go out and read this!

(You could also Stay In and Read This, if you want to be nit-picky. Maybe I should just call it Read This! but that sounds vaguely demanding…)

As someone whose attention is almost always involuntarily focused on issues of health, I am often curious about how other people view health and wellness. Are other people concerned the way I am concerned? Do I measure up to their level of knowledge and/or fanaticism about health? Or am I so far outside of the norm that you need a telescope to see me, floating out here by myself in the abyss of dedicated extremism?

All good questions.

There are so, so many answers.

Mostly I think I personally hover in a safe space of just-concerned-enough, while occasionally veering off into over-zealousness.

I’m ok with this.

It’s a fine line when you are a Chronic.

Mostly your doctors don’t know that much about your illness(es) and so you want to go out and fill in the blanks for yourself. Which can be good and wonderful, say, when you realize that you have a vitamin D deficiency that’s affecting your moods and energy levels that nobody was bothering to pay attention to (#TrueStory). On the other hand, this sometimes leads to Internet-diagnosing yourself with a brain tumor (it’s the only thing that has all the symptoms…of, well, everything). Nothing good comes from Internet-diagnosing. There is a plethora of <stuff> between helping yourself and hurting yourself when it comes to health propaganda.

So I wonder. I wonder about other Chronics, but then I wonder about non-Chronics. If you don’t need to spend so much time thinking about health and wellness, would you?

Yes, ostensibly, you might.

Enter A.J. Jacobs and his wonderful book, Drop Dead Healthy.

Backstory: A.J. Jacobs is a genius writer who is the editor-at-large for Esquire magazine. His name might ring a bell more so for his non-fiction bestsellers. This is the guy who followed the Bible, word for word, in The Year of Living Biblically, right down to the beard and the eschewing of mixed fiber clothing. His other self-as-an-experiment tomes include the aptly named My Life as an Experiment and The Know-It-All. His forthcoming book is an investigation into family trees and the possibility that all people are somehow related. Essentially, he is my writing-style soul mate, in a completely platonic way, and if I didn’t have so much chronic <stuff> to deal with I would probably follow in his investigational footsteps.

It seems like so much fun.

When Mr. Jacobs decides on a topic, he goes for it. Actually that is an understatement. I don’t know that there are words to describe his level of commitment. For instance, the subtitle to Drop Dead Healthy is “One Man’s Humble Quest for Bodily Perfection.” He really means it.

Now before you roll your eyes and think, “Just what this world needs, another lug writing a book about eating tree bark and lifting heavy things,” please Google Mr. Jacobs. Actually, I’ll just post his picture:

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See that face? That’s a face you can trust.

ANYWAY.

Just like me, Mr. Jacobs (Should I be calling him A.J.? Or just Jacobs, like this is an actual journalistic piece and not just a personal blog topic? Mr. Jacobs sounds like I’m talking about my high school gym teacher. I know, I know, cool it on the digressions, Nic, you are confusing us. Now what was I saying?) wondered a lot about health. He also wondered about all the health information floating around out there and all the ways that people try their very hardest to be healthy.

The book breaks the body down into different sections. Each month for 2 years (!!) Mr. Jacobs followed as much health advice about that body part as he possibly could. This means he did everything from wearing noise canceling headphones (Chapter 3: Ears) to having his vegan/holistic-everything-practicing aunt sweep his apartment for toxins (Chapter 12: The Endocrine System). The result is 375 pages (hardcover) of myth reinforcing and debunking, funny anecdotes and poignant observations about Americans and their occasionally unhealthy obsession with health.

Conclusion: it’s not just me!

Small victories!

Some of my favorite bits (Without giving the whole thing away- this is a Go Out and Read This post, after all. So you know, follow that instruction…):

~Chapter 2: The Heart. In this chapter, Jacobs explores exercising, and the fact that he really doesn’t want to do it. As part of his motivational strategy, he downloads an app that uses Photoshop-like technology to age his self-portrait. He hangs it on the wall and each time he doesn’t want to work out, he thinks of his future self. Then he does what he needs to today for the man he’ll be in the Future. He calls the picture Old A.J. and finds it to be pretty helpful. I think this is great. When I first read this book when it came out in 2012, I was barely getting through a particularly painful semester of college. I wanted to just drop the class and not deal with it any more, but it was a required course I’d have to take eventually. I borrowed Jacobs’s rationale and told myself every day that I was going to class for my future self. Future Nic will be so happy she’s already taken that class and does’t have to sit through the first half of it again in a future semester! Future Nic will be thanking me so much for pulling through right now! You know what? It totally works.

~Chapter 11: The Brain. Is neuroplasticity, or the idea that our brains can be molded, shaped and miracle-growed our whole lives through, for real? The experts Jacobs consulted provided mixed reviews. Can we become Einstein overnight or with a kit bought for $19.95 on a late night home shopping channel? Not so much. However, we can expand our brains at least a little bit. I absolutely agree. I know that when I am intensely symptomatic and the only “functioning” I do that day is saunter down to the couch and watch me some Teen Mom 2, I can feel my brain turning to mush. On days when my synapses actually feel like firing, I love to read non-fiction (full disclosure: Jacobs’s The Know-It-All is one of my favorites) and feel like with each new factoid I retain, my mind is expanding.

~The Appendices: In a nutshell, Jacobs lays out How to Turn the World into Your Gym, How to Eat Less, Five Tips on Treadmill Desks (which I would love to have, if not for that whole orthostatic-intolerance thing), Five Foolproof Methods for Stress Reduction, The Ten Best Pieces of Food Advice I’ve Gotten All Year, and Five Toxins I Now Avoid. You may want to get this book from the Library just for these sections!

~This book has also given me this gem of a doctor joke, which somehow I had managed to have never heard previously:

“What’s the difference between a doctor and God?”

“I dunno.”

“God doesn’t pretend he’s a doctor.”

(Page 287, hardback edition, courtesy of a New York City cab driver)

It’s funny ‘cause it’s true.

Happy Reading, Chronics. As always remember to consult with an actual doctor and not just a well-read writer before starting or stopping any exercise program, medical treatment, etc., etc!

Confessions of a lapsed clean-freak

Hang on.

I wrote down my topic for today’s blog on a little slip of paper so I wouldn’t forget what I wanted to write about.

I just KNOW it’s got to be around here somewhere.

Aha!

Oh wait, no, that’s a little slip of paper that says, “Clean the bathroom.”

Did I do that already?

Yes, ok, good.

Dum, de dum, dum, dum, I am looking…I am looking for a scrap of paper…

Yes! Here it is! Ok, today’s blog is supposed to be about…

Organization.

Yeah, about that…

Somewhere between being a Chronic and being a Writer, my desk has EXPLODED. There is paper everywhere. Doctor notes here, scribbles that say “Main character should be an orphan,” over there (aren’t all tragic characters orphans?). All jumbled into the mosh pit that is my workspace.

As my workspace is currently in my bedroom and not a home office (#LivingAtHome, #ParentsAreMyRoomies, #PersonalSpaceLimited), all of this paper tends to co-mingle with stuff like laundry and a herd of stuffed elephants (I should really start an Etsy shop- anyone have advice on this?).

So yeah, it’s about time for an Organizational Overhaul.

First thing’s first.

Gather supplies.

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Can I digress for one quick second? It’s not an actual digress, as it’s about cleaning supplies, however it’s not actually relevant to organizing so it kind of counts as a digress…

What was I saying? Oh right, my digression.

I love Swiffer Sweeping cloths.

In yet another example of how old I am, I remember when they first came out. (A digression within a digression: Why does this keep happening? I am not that old, however I suddenly sound like someone’s great-grandma every five minutes when I talk about remembering when something was invented. Seriously. Gosh.) As a young neat-freak, these were the coolest thing ever. So much dust-and it sticks to the cloth! I still can’t get over it!

Ok, so I’ve got my supplies.

It’s hard to just dive in. I am a divide and conquer sort of gal, so I’m going to compartmentalize the beejesus out of this project.

Something “easy” (does any of this qualify as easy?) to start with would be my bookcase. I’ve got two, one little one I’ve had forever and one Ikea monstrosity that I am forever grateful to my mom for putting together because I gave up after Diagram 2. Ikea directions are hard, ok? I’m pretty sure my mom made up her own instructions anyway (and they were probably better than Ikea’s, she’s a smarty). It hasn’t fallen apart in 6 years, so I think we’re good.

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Someday, I will have a GrownUp room without any toys on my shelves. Sigh.

80% of my books fit nicely into my bookcases. The remaining 20% have migrated- to my nightstand, to my desk, into piles on the bookcase.

I went through them pretty quickly- there are some that I am just never going to read again (a historical fiction about Madame Tussaud? Good, but creepy. Now I understand why the wax figures freak my sister out so much) and some that are outdated (Writer’s Market from 2009- pretty sure half the agents in there have changed their numbers by now).

Next up is my dresser, which means clothes, so I decide to do closet Part 1 with it. The Prednisone I had to take to make my PMLE recede in June has made this a pretty easy task also- I will simply be buying all new pants this Fall season. I’m going to keep my favorite pair- Banana Republic cigarette pants in the prettiest fabric you’ve ever seen- just in case I ever decide to have elective surgery to remove my hip bones and they fit again. But everything else- to the donate pile!

I’ve been avoiding two things- my desk and my closet (part 2). This is where the actual organizing is going to take place.

I feel like I’ve stood in the middle of my room surveying the enemy for an incredibly long time. I’m trying to determine if he has a weakness I can exploit.

That does not seem to be the case.

The pile of papers has grown so much that it’s practically a mutant monster from mars. I resist the urge to give up and go rot my brain with junk television shows instead.

I must be bigger than my disorganization!

Sorting seems like a good idea, so I put everything into categories (compartmentalizing- good, I can deal). It seems like an obvious place to start, making sure that the instructions for my heart rate monitor and my notes on character development are separated. There will be no fraternizing allowed on this desk, no sir!

I happen to have a lot of office supplies (I shouldn’t be allowed within 100 feet of Target during Back to School sales) so I have pulled together some folders, binders, and an accordion file to help my neatly sorted piles remain so.

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Let me just say, Chronics, it is really important to be organized with your medical records. I have been slacking, and it has really been confusing, as I juggle a multitude of doctors, appointments, tests, etc. (Want to know who my doctors are? See Avengers, Assemble! July 21) It’s good to keep track of symptoms too, and to keep a list of the medications you take and a record of any changes made to them. I have to update all of these things myself. My last update was probably in May and a <WholeLotOfStuff> has happened since then. I guess I could just tell my doctors to read my blog…

ANYWAY.

My organizational bonanza is coming along quite nicely.

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This is what “better” looks like.

I haven’t had the guts-I mean, time- to go through my closet yet (How does so much stuff fit in there? I’m a little afraid that if I ever actually get to the back of it, I’ll fall through to Narnia). There’s always the weekend.

Now I just have to decide what to do with all this stuff. The paper is basic enough to deal with- recycle, shred, keep. But the stuff? Hmmm…

I guess I will have to plan a yard sale. Stay tuned to hear how that goes…

 

P.S: Need some help with your own reorganizing, Chronic friends? A great book is It’s All Too Much by Peter Walsh. I’m a fan of Walsh, who has appeared on the Oprah show and her network multiple times. He’s pretty no nonsense about clutter. That being said, be forewarned, he will make you feel like a hoarder if you own more than the clothes on your back. As with anything, take the clean-freak radicalism with a grain of salt!

And just as a note to you from me, I give you permission to keep your Sweat Clothing. Except the stuff with holes. Get rid of that. (Have no idea what I’m talking about? See That time I let Sigourney Weaver tell me what to do, July 30) 🙂

Invisible Illness Awareness Week

You guys.

It’s Invisible Illness Awareness Week, and nobody told me.

I feel like, as a Chronic Illness Blogger, I should have gotten the memo. There really should be some sort of Bat-Signal that goes out in the sky, so that we are all on the same page. Seriously. Gosh. Thanks a bunch to A Southern Celiac mentioning it on her Facebook page because I would have totally missed it had she not. #ILiveUnderARock

ANYWAY.

Invisible Illness Awareness Week was started way back in 2002 by a woman named Lisa Copen. Cheers to you, Lisa Copen, wherever you may be. Thank you for getting the word out that Invisible Illnesses are real and that they matter!

This year’s theme is Just One. Invisibleillnessweek.com says, “You may be just one, but you are one of over 100 million people who live with a chronic illness, and most of the illnesses are invisible. This year, choose to do JUST ONE THING… Whether it is to blog, post on social media, talk to a friend, share an article with a loved one…. do ONE thing that will make a difference.”

You may have seen these lists making the rounds on your favorite social media sites, 30 Things About My Invisible Illness You May Not Know. I’m going to share mine as my post today. I encourage every Chronic who feels comfortable sharing to do the same. If you want to share with me, I’d love to hear it, so leave me a comment here or on Facebook (www.facebook.com/iamchronicallywell). Pick your favorite question and let me know the answer!

Here’s my list:

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is/are:
 POTS (postural orthostatic tachycardia syndrome), migraines, CVS (cyclical vomiting syndrome), Fibromyalgia, and PMLE (polymorpheous light eruption)

2. I was diagnosed with it in the year(s): 2002, 2009, 2010, and 2014

3. But I had symptoms since: Forever. I can remember being unnaturally dizzy even when I was little.

4. The biggest adjustment I’ve had to make is:
 Staying home so much

5. Most people assume:
 I assume that people assume (a whole lot of assuming going on here…) that either a) I’m handling myself very well for someone who deals with so much or b) that I’ve completely lost my marbles. The truth is somewhere in the middle.

6. The hardest part about mornings are:
 I have to take my meds at the same time every day, and I have to take them before I’m able to function. Somehow this works out that I have to wake up at 8am every day even if I don’t want to, because I have to stay on schedule and eat before I take anything.

7. My favorite medical TV show is:
 Grey’s Anatomy, though really just Seasons 1-6 (Izzy and George should have been together in Seattle Grace Heaven! I just can’t get over this!)

8. A gadget I couldn’t live without is:
 My iphone because it reminds me to take my meds =)

9. The hardest part about nights are:
 That they are equally too long and not long enough.

10. Each day I take __ pills & vitamins. (No comments, please)
: I’m down to 12 (woot, woot!). My record was somewhere near 30 so I celebrate those 12 little pills.

11. Regarding alternative treatments I:
 have done everything from balancing my chakras to having acupuncture needles uncomfortably close to my eyeballs. Only some of it was helpful.

12. If I had to choose between an invisible illness or visible I would choose:
 I really don’t like this question. I don’t believe in comparing illnesses/disabilities because each has their own ups and downs.

13. Regarding working and career:
 It’d be really nice to get a book deal.

14. People would be surprised to know:
 I don’t know that anyone would be surprised by anything about me by now, haha.

15. The hardest thing to accept about my new reality has been:
 That I have to go through all of the letters of the alphabet because Plan A, B, and C have not worked out.

16. Something I never thought I could do with my illness that I did was:
 Go on vacation. Last year we drove to Tennessee for 10 days and although I was covered in a PMLE rash I didn’t die! (and actually had fun!)

17. The commercials about my illness:
 don’t exist, but would be really weird…I can’t think of anything specific right now, but I envision lots of stick figure people falling down

18. Something I really miss doing since I was diagnosed is:
 Going to the mall with my friends, even though we are old now and haven’t been mall rats since the early 2000s.

19. It was really hard to have to give up:
 Gluten, <OhMyGosh> I miss it so, so much.

20. A new hobby I have taken up since my diagnosis is: Sewing Superhero elephants.

21. If I could have one day of feeling normal again I would:
 Ride rollercoasters. All those signs that say “You should not ride this ride if you have a heart condition”? I would breeze right past those suckers.

22. My illness has taught me:
 To be less judgmental

23. Want to know a secret? One thing people say that gets under my skin is:
 Complaining that they are so tired. Because you know what? I bet you are making choices that end in you being tired- you go to work, you have plans with friends, you stay up late to watch Scandal, etc. I’m tired without the fun of using up the energy-it was never there to begin with.

24. But I love it when people: Say they love my blog! It makes my whole day every time I hear it.

25. My favorite motto, scripture, quote that gets me through tough times is:
 “Alles ist goot”. It means “all is well” in German.

26. When someone is diagnosed I’d like to tell them:
 It may feel like the end of your world, but it’s not the end of you. Everyone’s life goes through changes. This is your change. You can’t control your illness but you can control how much you let it bring you down. Don’t let it bring you down!

27. Something that has surprised me about living with an illness is:
 You never realize how much your body is capable of until it STOPS being capable of those things. Bodies are AMAZING. Really.

28. The nicest thing someone did for me when I wasn’t feeling well was:
 Came to my house to see me (instead of us going out), and really only stayed an hour when I said “I can only handle an hour.” Also, not holding it against me when they offered to come to my house to see me and I just couldn’t function and had to say “No, but thank you so, so much for offering!”

29. I’m involved with Invisible Illness Week because:
 I believe you can be what you can see. When I was first diagnosed, I didn’t have any Chronic role models. I was under the impression that you get a chronic illness and you hide under the covers for the rest of your life, because no one was “out-there” for me to see doing otherwise. So that’s what I did, until I decided not to anymore. I want other Chronics to see that you can still be YOU with chronic illness.

30. The fact that you read this list makes me feel: All warm and gooey inside, like a perfectly baked brownie…mmm…brownies…

Now get out there and spread your own awareness, Friends! Be sure to visit http://www.invisibleillnessweek.com for ideas and all sorts of Chronic goodies. Happy Invisible Illness Week!

The Green-Eyed Monster

No, I’m not talking about the Incredible Hulk today.

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Although that was a good guess, as I often feel a deep connection to Bruce Banner, about which I love to pontificate. But not today, Chronics. Today, I’m talking about:

JEALOUSY

Bum, bum, bum…

I really wish my blog had the ability to add in sound effects. You will have to settle for me writing them in…

Ok, so here’s the deal.

I have really awesome friends and family members, Chronic and non-Chronic. This is good.

I have Facebook, which allows me to connect with said awesome friends and family members, plus all of you super fun readers (Like my page: www.facebook.com/iamchronicallywell ) This is also good.

Kind of…

Because you see, Facebook has created this weird little phenomenon that is apparently common enough to get an acronym and be referenced in “scientific” studies. It’s called FOMO, or fear of missing out. The short version is that people mostly post about all the super fun things they’re doing using only the most flattering photos of themselves. When we scroll, scroll, scroll though our Newsfeeds, smiling face after smiling face, some part of our brain goes “Hey! We are NOT having as much fun as everyone else. Why not?” Then you freak out just a tiny bit (or a lot bit) and think you are missing out on something, hence the scientific acronym.

In truth, most peoples’ lives are not one giant party all the time. Your vacation may have led to 4,352 pictures (which you felt the need to share), but it only lasted 10 days. Just because your significant other and you are competing for the “most ridiculously in love with my S.O.” award in that profile pic doesn’t mean that you never have days where each of you needs your space. However, Facebook and the human brain have one very specific thing in common:

Neither seem to care too much about REALITY.

My brain is not immune. I will eat your vacation photos for breakfast, and go back for your concert pics for lunch. You swam with dolphins? I love dolphins! (Nic Note: This is not referring to any one person. I know a lot of people who swim with dolphins. Someday, I resolve to also swim with dolphins.) You saw Carrie Underwood? I love Carrie Underwood! I could go on…

In all seriousness, though, being envious is something everyone has to deal with, at some point or another, Facebook or not. Jealousy was not concurrently invented with social media (all though it was a huge PR move for them!).

In case you haven’t heard, it is hard to be a Chronic. As I lightly touched on in Friday’s post (College!), chronic illness at the very least interrupts, and at the very worst destroys, dreams and ambitions. It’s a lot easier to get jealous of others when you CAN’T do something because your body isn’t able.

Boy, do I get jealous.

My immediate family loves to tease me because I am a fan of what I call the “Life Plan”. This is a “magical thinking” technique in which you plan your whole life based on one tiny detail. For instance, for as long as I could remember, I wanted to be a Broadcast Journalist. I was even in my state’s Junior Miss Pagaent senior year of high school because Diane Sawyer had won the National title her senior year, and I wanted to do everything I could to emulate her (except I didn’t win, so, yeah…). So, ok, Broadcast Journalist. I picked out a college with an excellent program, researched where I’d intern, decided where I’d apply to work after graduation, decided where I’d live, etc., etc., Life Plan, you get the gist. Problem with the Life Plan, as with all magical thinking techniques- it’s unrealistic. Enter POTS, stage left, exit College, stage right, Curtain on Life Plan.

From 2007 to 2013, I changed my major and accompanying Life Plan approximately 492 times. I tried to plan around my illnesses, over them, under them. I couldn’t figure out how to work with them.

All the while, I lived on a steady diet of Facebook profiles.

See where this is going?

Nowhere good, that’s for sure!

Let me tell you, no one posts about how homesick they are or how weird their roommate smells or how they got a D in Bio when they are pre-med and maybe should rethink their career plans (unless they have a real problem with serial oversharing). No one is out there advertising that, chronic illness interference or not, they also have NO IDEA what they are doing, either (not just in college, but post-graduation, too).

Do you know when they do tell you those things?

When you do a revolutionary thing and talk to people in person.

Again, chronic interference has meant that online communication has been my go-to for a looooong time now. It’s been way easier to drag my MacBook to the couch with me than to drag myself to a coffee shop of over-stimulation horrors (Fluorescent lighting! High pitched elevator music! Overpowering smells!) to have a conversation with someone. You do what you have to, when you have to.

I’ve recently been trying to work on “showing up” in person and not just online (which sounds totally weird to say, but it’s the truth so there you have it), and it has really made a difference in my jealousy levels. Do I still get super envious of people who are not Chronic because I am dealing with stuff that doesn’t even enter their stream of consciousness? YES, <OhMyGosh> but that is a personal thing I am working on.

(For instance, I was at the beach this past weekend, and walked past a group of people my age-ish going out for the night while I was headed in. They were eating ice cream. My brain was like, “Whyyyyyyyy??? Some people are so Luckyyyyyy. They don’t even knowwwww.”)

Talking to people, I’ve come to a startling conclusion about Life in General:

Chronic illness doesn’t kill dreams so much as Growing Up changes them.

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Here’s the thing. Somewhere around my 21st birthday, I was watching the news, and I thought to myself, “Wow, I am really glad that I’m not a broadcast journalist.”

I didn’t think that because at the time I was really sick and would never have been able to handle the job. I thought that because as I watched the news anchor deliver a gruesome story with the same level of emotion as the previous “fluff” piece, it just didn’t seem so appealing to me any more. I had taken some college courses online by then, and had realized there were tons of interesting subjects to learn about. Sure, there were aspects of broadcast journalism that I still found appealing (the traveling, the excitement, the power suits) but as a whole, I don’t know. It just didn’t seem like the thing for me, even though from age 10 I had always thought it would be.

Speaking of what I thought about when I was a youngster, a few years ago I stumbled upon a story of the “Future” I had written for myself and my friends when we were graduating 8th grade. Based on our personalities and hopes and dreams of the time, I had written about 20 pages about what we were going to be like when we grew up. You know how many of us are doing the things I wrote about way back when?

Um, yeah, that’d be none.

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Pardon the profanity, but seriously…

There were 7 of us in my prophetic story, and all of our Life Plans changed.

Everyone’s life evolves over time. Even if my chronic illness had never happened, chances are my life would have taken a detour from my plans at some point for some reason.

Long overdue Conclusion: Jealousy is a wasted emotion. I am probably jealous of things I perceive about people that if I told them, they would probably laugh and say “Oh, wow, that’s not really how it happened/ is/ looks like.”

Reading back over this, I feel like I’m making it sound as though “reality” is a negative thing where everything is always worse than it appears. That’s not my intention, because it’s not true! For instance, maybe you have 986 pictures of your great night out, but the best part was when you went home and ate pop-tarts while watching Netflix with your roommate. That’s not going to translate into Likes on Facebook, but it’s the reality.

What I mean more than anything is that Jealousy doesn’t care to look at the whole story. It’s looking at the trees (and their lovely leaves that are so much greener than mine!) and not the forest.

On the flipside of my being jealous of others, I do have to take a second and make a note about a very strange and kind of infuriating occurrence that tends to happen for Chronics: people telling us that they are jealous of our illness. As in “You are so lucky that you don’t have to do anything.” Or “I’m so tired, I wish I could stay in bed like you do all day.”

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Let me help you out, moronic person who thinks this is an acceptable thing to say. It’s not.

If you’d like to be jealous of me for something, I much prefer that you envy me for my acerbic wit and captivating writing talent.

I’m also a very good baker, and would love to share with you my recipe for Humble Pie, but I seem to have misplaced it.

In short, if you are feeling envious, take a minute to take a step back and look at the whole story. Then take another step back, turn around, and look at your own story. Are you too busy looking at others to realize all the great things about yourself?

I just recently (as in, while I was writing this) wrote myself this note and stuck it on my computer:

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When I am scrolling more than what’s good for me, I need to remember what I’m good at, what makes me special. I make pretty awesome stuffed elephants (see The Crafty Chronic (2) August 27), that’s my thing right now. It’s a pretty cool thing, if I do say so myself. Focus on the pretty cool things, Nic!

I’m hoping that having a sticky note reminder is enough to get my green-eyed monster under control, or if nothing else, interrupt him for a minute so I can see clearly again.

Because really,

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