True Love

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I love this quote by Jim Rohn. Packaged in a picture with Calvin and Hobbes, it’s kind of perfect.

Why does this quote mean so much to me?

Because personally, I feel like this is the definition of True Love.

Whoa, that’s kinda heavy for a Friday.

But really.

True love is not a Disney prince who defeats dragons for you and whisks you off to a castle in the sunset distance. True love is not someone else figuring out your problems for you. True love is not being rescued.

True love is this quote.

I will take care of me for you.

In nearly every situation where something in your life needs to change or get better, it will be said that you need to “do it for yourself” in order for it to stick. Yes, this is true-ish. That’s the first step.

But it won’t stick if that’s it. You do it for yourself and then—

What?

Nope, not gonna work out for you in the long run.

It’s got to be for you AND _______.

Why? Because it’s far too easy to let ourselves down.

I’m the only one who knows I didn’t do my exercise program today, what does it matter?

Sure, eating simple sugars (like cupcakes— sweet, sweet cupcakes) makes my blood sugar wonky and I end up cranky, but I’m the only one hurting then, right?

I forgot to take my medicine, again. Not a big deal if I can’t get off the couch today-I’ll just write the day off as a loss. No big deal.

No.

We don’t live in a vacuum where our actions (or lack there of) only affect ourselves.

Now, just to be clear, I am not only talking about significant others (though this was how the quote was intended). You might take care of yourself for your children, your parents, your dog; anyone who means something to you.

I will take care of me for you

This means that I will do whatever I need to, in order to be able to bring my best self to the table. I will do everything in my power to show up, be there, and take part, whatever that means for us.

The way I take care of myself is this: I pay attention to my Chronic Illness. I investigate new treatment options, go to my doctor’s appointments, and follow their suggestions. I take my medications. I exercise. I shower. I keep myself hydrated and my blood sugar stable. I also do things that make me happy and reduce stress, like sewing superhero-themed elephants and practicing my deep breathing techniques.

I do all of this so that I can say yes.

Yes, I can look over that cover letter with you, Sissy.

Yes, I’d love to go on your errands with you, Mom.

Yes, Suki, it’s time to go for a walk now.

Sometimes “taking care of me” means saying No.

No, I don’t feel up to going out today.

No, I’m not able to look up that information right now.

No, I think I’ll go to bed now instead of staying up.

Each time we choose to “take care of me for you”, what we are really saying is this:

I love you.

Personally, I think it is easier to say “I’ll take care of you.” It’s easy to see someone else, and think that because we are on the outside, we know what they need and how to give it to them.

It’s 10 times harder to say “I’ll take care of me for you.” It’s hard to think that our own self needs work. It’s hard to do that work ourselves, without asking someone to help (i.e. do it for you) or making it someone else’s responsibility altogether.

We want Disney princes.

We want Suzy Housewives.

Please don’t get me wrong. There are occasions where we need the care of others, and “I’ll take care of you” becomes supremely important.

However, I feel like on a day-to-day basis, I’ll take care of me for you means more.

Someday, I hope to fall in love.

Someday, I hope that birds sing and rainbows appear suddenly in the sky, and Disney makes a personal call to turn our story into a movie.

I would love, love, love to hear someone tell me that they will take care of me.

But I would love it more if they said this.

My dream significant other feels the same personal responsibility that I do.

S.O. takes care of themselves for me, because they want to say Yes! to me as much as I want to say Yes! to them.

That says love to me.

That says commitment to me.

In the meantime, while I’m waiting around for the stars to align, I’m taking this principle seriously in other facets of my life.

As a Chronic, I am familiar with “I’ll take care of you.” There have been times when I desperately needed it. There have also been times where I didn’t need it quite so much but still let it happen because it was familiar and easy and made me feel good.

In my journey to Chronic Maturity, I’ve come to recognize there is a time when this can shift, when it must shift. Even with my recent heart-hiccups, I’m not in a stage where I need “I’ll take care of you.” I am learning every day how to take better care of myself. It is my greatest hope that when my family and friends see this, they don’t see it as a negative “She doesn’t need us anymore/in the same way,” but as a positive.

I am taking care of myself for you (all of you).

Because I love you, just that much.

And it is my greatest hope and deepest wish, that you all love me that much too. ❤

 

I hope you are taking care of yourself, Chronic reader, for yourself AND for someone else. Want to talk about it? Leave me a comment here or on my Facebook page: http://www.facebook.com/iamchronicallywell

 

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The Crafty Chronic (2)

Or Part Deux, if I were French, or an episode of I Love the 80’s on VH1.

Sewing.

YAY!

I don’t have a heartwarming story to tell you about how I learned to sew, the way I did about how I learned to crochet (The Crafty Chronic (1), August 4).

Sorry.

I don’t actually remember how I learned to sew. It may have been in a past life, for all I know, as I’ve just always seemed to have this skill. #NotBraggingIPromise

When I was a nerdy bird elementary school student, instead of going to a summer camp where you play in the dirt and sing songs around a campfire, I headed off to our local fabric store for sewing camp.

Yes, they have those.

At my first session of sewing camp, I was to make a pillow and a drawstring backpack. I could barely contain my excitement at getting to pick out fabric. Really, it’s the most fun part of any project- designing it in your brain, picking through piles of fabric colors and patterns, finally choosing the perfect one. My pillow was this blue, green and yellow plaid concoction. (It would go great with my bright yellow and green bedroom! Coincidentally, I now really dislike the color yellow. I have been “yellow-ed” out.) For the backpack, I chose a classic denim for the main part, and a pretty purple flowered bit for the flap, with a matching dark purple drawstring.

I returned to sewing camp multiple times, and came home with a dress (which fit but I never wore) and a hot pink fleece sweatshirt (which didn’t fit but I wore all the time).

Like all my crafty projects, you can bet that the things I’ve sewn will show up as Christmas presents. One ambitious year, I made my mom, step-dad, sister and I matching pajama pants in a red flannel snowman print. Mom and Step-dad still have theirs and wear them, even though it was like 15 years ago that I made them. Mine did not survive the Sigourney Weaver Purge of 2008 (See That Time I Let Sigourney Weaver Tell Me What to Do, July 30). My sister’s are currently Missing In Action. There was only one photograph of all of us wearing them together, but as it was taken with my sister’s Very First Digital Camera (“Yes, kids, I remember the year they invented those,” the old lady rasped as she swayed back and forth in her rocking chair on the porch…), it no longer exists.

Now, I am my family’s short-order seamstress. I don’t have enough fingers and toes to count the number of times someone has asked me to fix something. If I can’t, my mom can- she happens to be one crafty lady herself! And as I just don’t grasp the concept of “invisible hems”, that’s a super good thing.

Mom actually used to make our Halloween costumes from scratch. She was THAT mom, and it was awesome! Here I am as the best dressed Ballerina in the St. Paul area:

Scanned ImageIt also came in handy that she could sew, because as we were living in the St. Paul, MINNESOTA area at the time, there was a blizzard on Halloween, and Mom had to take the seams out and pin our costumes to our snowsuits.

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Being crafty is a very handy skill. Also, don’t live in Minnesota if you hate snow. #MomDoes

I happen to have a very good assistant when engaging in Crafty behavior:

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However, she tends to think that the nice piece of flannel I have laid out on the floor to measure and cut is there for her personal use and lies down on it. Which is unhelpful. I wish I had a picture of this, but I am usually too busy Shoo-ing her away as I JUST PINNED THAT, SERIOUSLY BUG?!

I love to make bags. Cosmetic bags are fun and super easy. As are what we DC kids call “reusable bags”. (We have “bag tax” here, which means if you use a plastic bag at a store-ANY store- you get charged 5 cents for it. Which doesn’t seem like a lot until you go grocery shopping every week. Or go to Target. So we have “reusable bags”-cloth bags that you are supposed to bring with you. However, everyone always forgets, and no one wants to pay for bags, so people just carry their stuff out of the store. Hence all the new security guard positions available in this area to check receipts…#Environmentalism #BetterInTheory)

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Sometimes I get bored and need to refresh my pattern collection with some new ones. There really are patterns for anything and everything you could imagine. In my search for a new project, I had to wade through doggie jacket patterns (I crocheted Suki a sweater once. It fit, but she ate it.) and Frozen make-your-own-Elsa-costume for Halloween patterns.

But it was worth it.

Because what I found was the greatest pattern of all time:

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I really, really, LOVE elephants ❤

I just so happened to have some leftover Marvel Superhero fabric from another project…

And so, the greatest thing I’ve ever made, EVER, was born this weekend:

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His name is Rory.

He is Suki approved:

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Really, he makes me Sew Happy, I am just losing my mind. If you happen to get a stuffed elephant from me for Christmas, I’m sorry. They are just Too Fun to make. You’ve been warned. #SorrySissy

 

I would love to know about your Crafty selves, Chronics! Through the wonders of the Internet, I’ve been connected to a number of Crafty people, Chronic or not, and I’m loving what you all are coming up with. Do you have a favorite kind of craft? A project that made you Sew Happy? Tell me about it! Drop me a note on my Facebook page: www.facebook.com/iamchronicallywell

Happy Birthday, Suki!

Everyone should have a dog.

Really.

Dogs are the greatest.

I have a dog, and she is my very best friend. I really don’t mind saying that, and if you want to think I’m weird or not a “people person”, go right ahead. Suki and I will be over here, hanging out, not caring what you think.

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#2013

The story of how Suki came to be my best friend is probably my favorite story ever. When I was younger, we had a dog, a beagle-husky mix (yep, she was a little odd looking) named Spicy who was just the sweetest. She was my mom’s dog, and when she went to the Great Dog Park in the Sky, my mom vowed that she would never have a dog again, it broke her heart too much. I loved Spicy, but I didn’t take that vow of no-more-dogs-ever. A girl is just plain lonely without a dog. So I began what I call “politely requesting” (and what my parents called “begging desperately in a whining-manner”) that we get a dog. I had recently been diagnosed with the vaguely titled “fainting disorder” and started high school. Things were rough. I needed a friend.

I looked in the newspaper for puppy ads, and decided that I wanted a poodle-mix. Poodle-mixes are low-shed, which appealed to me and my allergy-prone sister, as well as my tired-of-vacuuming-the-couch-all-the-time mother. I called and left messages for everyone listing poodle mixes in the paper. The first one to call me back was a breeder of Bichon-poodle mixes, about an hour from our house. We drove out there immediately. My sister and I were so excited, but my mom was skeptical. When we pulled up to the breeder’s house, my mom said “Girls, we are just looking. We are NOT getting a dog today.”

Nodding vigorously, we raced to the front door, where the breeder instructed us to head around to the back yard. Mom repeated her warning, “We are NOT getting a dog today, ok? We’re just looking.”

We entered the backyard, where a playpen was set up, fluffy puffs of puppies jumping around excitedly within it.

It was then that Mom said this:

“OH! PUPPIES!”

Cue the melting. She had no chance. There were 5 puppies: 2 redheads, 2 blondes, and 1 black. The black one was jumping and running about and my step-dad immediately said “That one! He’s a boy and I need someone on my side in our house.”

I, on the other hand, picked up a reddish-brown one and sat her in my lap (After her first haircut, we discovered that Suki is more of a dirty-blonde). The breeder came over and talked to us, boring stuff about bloodlines and did we have other pets, etc. I don’t really remember because I was completely consumed with the soft furry pile in my lap. She had fallen fast asleep, and it was like she’d always been there. My family members implored me to play with the others, but I knew in the first 5 minutes. The girl in my lap was Suki and she was coming home with me. My step-dad would have to deal with being even more outnumbered by females.

A week later, Mom picked Suki up and brought her home. The rest is history.

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#babyNic #babySuki

Today is Suki’s 11th birthday, and I couldn’t have hoped for a better dog. She still routinely falls asleep in my lap. In fact, for a good while, we spent every day like this:

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She lies on top of my feet while I’m on the couch. Here I was doing homework, but she’s not picky. If I’m on the couch, so is she.

Suki gets that I am a Chronic. She knows things, in that weird, unexplainable way that dogs know things. If I forget to take my medicine, she barks at me. When I need to lie down, she scratches my leg until I comply. The first time I had a hemiplegic migraine and was frozen in temporary-paralysis in my room, she got my mom’s attention and brought her to me. If Suki is ever having a barking fit of any kind, the first thing my family does is yell out, “Nic? Are you ok? Suki’s going nuts!” Once they’ve determined that I’m ok, we know it’s ok to attribute her hysterics to the antics of the neighbor’s cat.

Suki’s name comes from my favorite show, Gilmore Girls. A pre-Emmy winning Melissa McCarthy played Sookie (I didn’t realize they spelled it this way till later. I like our “Suki” spelling better), the best friend of the main character. I figured it was a good name for a side-kick. It is. Though, she does have a variety of nicknames now that we know her better. I tend to call her Bug. Mom calls her Sook. (As in Sue-k) Our little cousins couldn’t pronounce the “K” in Sook, so they call her Sue. As in “Can you make Sue stop barking, please?”

Suki barks a lot. Her lungs are famous. She can bark for hours non-stop. The longest recorded was 3 hours straight when we were doing house construction. We haven’t given her the opportunity to break that record, and routinely take her elsewhere when people who aren’t us are in the house.

Suki is the best judge of character I know. She once bit a high school date of mine in the crotch-region when he was over for dinner. Had I listened to her, I could have saved myself quite a bit of heartache.

It’s a big deal if Suki likes you, because she pretty much doesn’t like anyone. Sissy’s boyfriend passed the Suki test within 2 weeks, something completely unheard of. They’ve been dating for nearly a year now, so clearly Suki knows what she’s doing.

When she’s not attached to my hip (I also tend to call her my “furry tumor” as she really does attach herself to me), Suki loves to nap. She can nap almost anywhere, but it’s best if there is a blanket and a pillow. She actually sleeps like this:

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She also happens to love stuffed animals. For the first 9 years of her life, Suki would completely destroy any stuffed toy within a half hour of it being given to her. At some point a few years ago, she realized they were her friends, not her enemies, and so she lets them live a little longer now. When she thinks we aren’t looking, she sleeps like this:

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Coincidentally, it was the giant panda cub, Bao Bao’s birthday this weekend at the National Zoo in DC. Bao Bao is like DC’s personal pet. People are OBSESSED with the baby panda. There was a line to see her. My mom and I went, and it just so happens that Bao Bao and Suki are kind of like the same person. See?

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Suki isn’t just a dog. She’s an alarm, an EMT, jerk radar, a cuddle-monkey, and giant panda-substitute. I really think she’s a tiny person in a dog suit. I am so grateful that she’s my friend, and you can bet that we will be eating cupcakes tonight to celebrate her special day. Except for Suki. She prefers pancakes. Which I will totally make, just for her. She’s also happens to be allergic to gluten, so maybe she’ll share with me. We are best friends after all.

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#2010

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#2014

My writer is blocked

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I have been doing this a lot lately.

Well, ok, I made cupcakes yesterday, as it was my half birthday and my mom’s three-quarters birthday, an occasion that necessitates cake, if you ask me.

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Today, I have been procrasti-eating all those leftover cupcakes.

Hey, gluten-free stuff doesn’t stay nearly as long as the regular stuff. I wouldn’t want them to go to waste…

But really. It’s my 30th post- WOOHOO- and I wanted to write about something SUPER AWESOME and FANTASTIC to celebrate. However, I’m just not coming up with anything. Really, universe, you should rethink your 30th post celebration presents…writer’s block was NOT on my wish list.

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Compounded by the fact that it’s raining, late-ish, and I’ve eaten my dog’s weight in sugar this afternoon, I’m going to forgo a lengthy post today (unless you want to continue talking about cupcakes, and writer’s block, and my dog). When one’s own wisdom isn’t available for comment, it is always a good idea to quote someone else. So here you go, your Friday wisdom, courtesy of the smartest bear to ever live:

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Have a great weekend, Everyone. I promise to charge my brain batteries this weekend and return with a full-length post on Monday!

Sharing is Caring and Other Life Lessons I missed because I was out sick that day in Kindergarten

It’s roommate season, Everyone!

If you are college-age or college-age-ish or just graduated-age or didn’t-go-to-college-and-just-started-my-career-age, or even if you are only 13 and have more siblings than available rooms, if you are going to be sharing your space soon or already do, this post is for you.

I have recently acquired a TEMPORARY housemate.

Her name is Sissy, and she happens to be my sissy (“sister” for all you non-Southern-US-English natives). Every once and a while, Sissy stops in at Homestead Station for half a second before her Life-train Choo-Choo-Cachoos on ahead to her next endeavor.

This means I have to share the bathroom…and the kitchen…and the living room (read: TV remote)…and all my fancy exercise equipment. Luckily we have our own rooms, leftover from our younger days (In her case, at least. Nic Disclosure: I have yet to move out of our family home. It has 98% to do with that teensy detail that I have a Chronic-Illness that severely impacts my everyday life…). I’ve heard a nasty rumor that in residential colleges they sometimes make you share that too. *Shudder* Good luck, Chronics-in-that-situation. My fingers are crossed for you.

I am not good at sharing (Physical things, that is. Clearly, as I have no problem “sharing” on the Internet). In fact, if Sissy were writing this blog post, she would write that I am downright territorial.

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Our relationship, according to my sister. I’d be the redhead, of course.

Listen, I like my stuff the way I like my stuff.

I have a routine and it is essential to my everyday Chronic Wellness that it not get overly interrupted.

Plus, I bought that fancy Clinique face scrub, darn it, don’t touch it!

(Insert older sister holding finger 2 inches away from <item> and giggling while insisting, “I’m NOT touching it!”)

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Or WORSE, she insists she’s Not Touching ME…guess who the Hulk is in this picture. Go on, guess.

So, ok, maybe, just a teensy-weensy bit on the territorial side.

But in true little sister fashion, I will now whine and complain that she does the same thing JUST AS MUCH as I doooooooooo…

At least we have not had to break out the duct tape and separate every space in the house into two equal halves. We haven’t done that in like, 2 whole years.

In all seriousness, though, we are both adults now.

And it would be super cool for us to act like that, right?

Yep. I thought you’d agree.

My game plan (because I can only speak for myself here):

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Learn to be flexible: Sometimes Sissy is going to want to use the recumbent bike when I was planning on it. Instead, I’ll use the rowing machine first. Easy. Sometimes Sissy is going to leave her dishes in the sink as she is running out the door to go <wherever>. As long as she puts them in the dishwasher later, no problemo. I can get over that. She wants to go to <OneMorePlace> when we are running errands? If I’m feeling ok, sure, I will go with the flow. Not feeling ok? It’s her turn to be flexible.

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Choose my battles: Ok, so she flushed the downstairs toilet when I was in the shower yesterday. It only scalded my tender skin for about a minute and then it was back to normal. Pre-adult Nic would have jumped out of the shower <RightThatMinuteSoapAndAll> grabbed a towel and yelled at her with <OverZealous> vigor about how it’s not like she has been gone that long that she can’t remember that flushing while someone is showering is a no-no. I mean that’s like a no-no everywhere right?! (Nic Note: Even right this moment as she reads this, Sissy insists she had No Idea…which I find hard to believe, but whatever. Let it go! Let it go!) Adult Nic calmly finishes her business, and level-headedly calls down the stairs to politely remind Sissy that <ForSweetGoodnessSakes> if there is <OnlyOneRule> to remember, pretty please, with cherries on top, remember NOT to flush the toilet while I’m in the shower, mmmkay? Bonus points for Adult Nic in that I did not retaliate.

I thought about it though, for just a tiny second. I might be an adult, but I will always be someone’s little sister.

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Sharing really is Caring: Go ahead, use the fancy Clinique face scrub. Just ask first. (Nic Note: Sissy just read this part and says to me indignantly, “I don’t use your face scrub!” So I said, OK, what do you use? To which she replied, “…your shampoo.” #Sisters) And if you really want to borrow that sweater, sure you can. Just don’t get anything on it! <I’mTryingOK?> And by the way, Sissy, is it ok if I eat your yummy can-only-find-it-at-that-one-expensive-place Gluten-free cereal? Sure I’ll bring you a bowl, too. Thank you!

I am all for taking care of yourself, Chronic, but also remember that it’s not so hard to be a good roommate/housemate/sisterfriend! You do your best, and *hopefully* the other person(s) will do theirs in return. Civility, my friends. It’s a beautiful thing.

One last thing, just because:

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Celebrities are just like us!

If you have picked up an issue of US Magazine (really, any tabloid will do), well, ever, you know that Celebrities Are Just Like Us! They go grocery shopping in cut-off denim shorts without brushing their hair, sometimes they don’t wear makeup, and they even go to the gym, emerging sweaty and grimy a few hours later (unless, of course, they are Sigourney Weaver, who just wakes up perfect. See That time I let Sigourney Weaver tell me what to do, July 30).

Another thing that celebrities have in common with us average folk? They too can have big bad scary chronic illnesses that may or may not impact their celebrity lifestyles. Some capitalize on a health focus (I am looking at YOU, Montel Williams, PS. My HealthMaster Blender is sitting in the basement along with my other TV infomercial purchases. It’s a nifty super-blender, but it makes it sound like a helicopter is landing on my house. Which is annoying at the least and headache inducing at the worst, so I don’t use it much. Ok, ever). Others try to hide it or deny it. And some just go about their business as usual, trying to figure out how to live day by day, the same way any other Chronic does.

Here’s a little list of some of my favorite Celebrity Chronics:

montel_williams_health_masterMontel Williams: As a kid, when I was home sick, I loved watching the Montel Williams show. Yes, I learned to crochet so that my mind wouldn’t be poisoned by the thematic elements in soap operas (See The Crafty Chronic (1) August 4), but I somehow managed to squeeze in an episode of Montel every now and again. He seems like a really genuine guy. Montel announced his Multiple Sclerosis (MS) diagnosis in 1999, and went on to sell a successful line of blenders, as well as become a best-selling author. When I finally had my official POTS diagnosis, Montel’s books “Living Well” and “Living Well Emotionally” were two that got me started on a path to better wellness, with the only side effect being an addiction to self-help books.

 

uploaded_file20130917-13378-1xgsix5.Jack Osbourne: Another MS Chronic, Jack Osbourne is the son of Ozzy and Sharon Osbourne. A nerdy-sort of kid way back when the Osbournes revolutionized reality television with The Osbournes on MTV (there I go dating myself again…my tween readers must think I am ANCIENT), Jack blossomed into a charming adult with killer dance moves on Dancing with the Stars. His finale performance with Cheryl Burke is still one of my favorites, and I loved tuning in to watch him do something so far out of his comfort zone, all the while dealing with his relatively new diagnosis.

 

 

1373461335_elisabeth-hasselbeck-articleElisabeth Hasselbeck: I’m going to say upfront that I mostly do not agree with pretty much anything this opinionated lady had to say as a co-host on The View. However, I will forever be grateful to her for writing “The G-Free Diet” about how to live with celiac disease, because it pretty much saved my life. I had lost more than 20lb in less than a month and the doctors were scratching their heads. Everything I ate made me sick. I heard Elisabeth talking about her celiac diagnosis on The View, read her book, put in to practice all I learned, and very soon afterwards, my digestive health got SO MUCH BETTER. So props to you, Ms. Hasselbeck. Thanks for sharing your Chronic story so that I could be helped. We’ll just agree to disagree about <EverythingElse>.

Venus-Williams-French-Ope-001Venus Williams: As a tiny tennis player with dreams/delusions of grandeur, I loved the Williams sisters. They made it exciting to watch tennis (which, let’s face it, was pretty boring pre-Venus&Serena), and I wanted to be as strong and powerful as they were. My tennis career never went further than playing my own sister at the park, and we never got much better than celebrating the fact that we didn’t hit a fly ball over the fence (this was a big accomplishment for us- we had the power, perhaps, but ZERO control), but I always paid attention when the Williams sisters were mentioned in the news. Venus was diagnosed with Sjogren’s Syndrome recently, and after taking some time to figure out how to be Chronic Venus Williams 2.0, came back and continues to be a tennis sensation.

bret-michaels-5-240Bret Michaels: Rockstar, king of poor decisions including that VH1 reality show Rock of Love (which I only watched maybe one or two or six episodes of…), Chronic? Yep! Bret Michaels survived a mini-stroke caused by a hole in his heart in 2010. Coincidentally, I happened to have a cardiac catheterization right about the same time he did for a similar hole-y heart problem. Mine wasn’t fixable, per se, as it was an abnormality instead of a full-on hole, but Bret got his fixed and picked up right where he left off- rocking out and spreading rock star germs to groupies in his free time.

 

 

Shannen27Shannen Dougherty: Not to be crass, but everybody poops. The sooner we all get over that, the sooner Crohn’s disease sufferers like Shannen Dougherty can get on with their day with less embarrassment. Seriously, people get over it. Apparently Shannen was afraid to share her diagnosis with the world because “it isn’t sexy” to have to go to the bathroom all the time, and this chick makes her living off of being the sexy bad girl. Frankly, if Brenda Walsh needs a time out from scheming to make a visit to the ladies’, I don’t mind as long as she comes back ready as ever to break some hearts.

 

 

3rd Rock from the Sun Kristen JohnstonKristen Johnson: Another favorite when I was living it up on the couch in elementary school? 3rd Rock from the Sun. When I wasn’t drooling over a teenaged Joseph Gordon-Levitt, I was cracking up at Kristen Johnson’s loud, over the top, alien-chic character. This lady made me laugh so hard and I loved it. She has had a number of Chronic issues sideline her career in the years since. First, a burst ulcer led to the removal of part of her stomach, and then more recently, a rare form of Lupus took over her body and her life. Never one to give up, Kristen is doing much better with the help of a specialist, and is doing her best to raise awareness of her condition by looking super-fab in People magazine.

I could keep going- Toni Braxton and Nick Cannon also have Lupus, and Lady Gaga is rumored to as well; Kim Kardashian apparently has psoriasis; Michael J. Fox has Parkinson’s Disease; Howie Mandel has OCD; Catherine Zeta-Jones has Bipolar II disorder; Biggest Loser trainer Jillian Michaels has Polycystic Ovary Syndrome and Endometriosis…There seems to be no end to famous Chronics.

I’m a big fan of the phrase “If you can see it, you can be it”—because I feel like it’s so true. Celebrity Chronics show us, most importantly, that life goes on, even after a Chronic diagnosis. You can still make your dreams come true and be adored by millions all while having some serious *stuff* to deal with. On days where I feel like my Chronic status is getting in the way of, well, pretty much everything, it’s nice to have role models, or at the very least, some very public Chronics to look to. In the same way that I don’t feel so bad about what I look like when I go grocery shopping because Julia Roberts looks like this:

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Even “disheveled” looks good on this oscar winner!

I feel just a tiny bit better knowing that a girl can have POTS and still compete to be America’s Next Top Model (Alexandra Agro, Cycle 20). And I feel strangely better about my own POTS when she too can’t handle standing for forever while Tyra Banks gets her critique on, and has to go lie down backstage because of tachycardia.

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The second she said she felt like her heart was racing, I turned to my mom and said “I bet she’s a POTSy.” #Right-o

So there you have it, Chronics, further proof that those alien-beings we call Celebrities are Just Like Us!

 

*In light of the recent revelation that Robin Williams was newly diagnosed with Parkinson’s Disease before his untimely death last week, I’d like to share the contact information for the National Suicide Prevention Hotline. Call 1-800-273-TALK if you are in crisis and need help. You can also call 911 if you need immediate help. Being a Chronic is hard. Iamchronicallywell urges all fellow Chronics to get the help they need when they need it. There is nothing stronger or braver than reaching out. Love to you all ❤  

Paging Sleeping Beauty

Seriously.

Where IS an enchanted spindle when you need one?

Like at 3 am?

Because after a week of truly awful sleep, I would not mind sleeping for 100 years. You know, just to take the edge off.

(*Nic note: When talking about fairy tales- which I have not once, but twice, just typo-ed as “farty tales” #BrainFatigue- I will always reference the Disney version, and not the original, Brothers Grimm version, as the original tends to be, well, grim. FYI.)

I have not been sleeping well, Chronics. Instead of staring at the back of my eyelids, I have been staring at my ceiling. The fact that I have the word “Relax” plastered up there isn’t helping, so much as taunting me. For whatever reason, I just can’t, Ceiling, ok? Jeez. My body is tied up in knots, and those knots hurt. My lack of sleep is quickly leading me to an unnatural level of empathy with 4 year olds who throw temper tantrums in grocery stores:

Temper-Tantrums

I feel your pain

Being tired and being fatigued are different. Tired is a sensation that leads to sleep. “Yawnnnn, I’m so tired,” is what you say right before you snuggle in with your stuffed elephant to go on an 8-hour trip to Dreamland. Fatigue is what you get when nights of not sleeping have compounded into a perfect storm that is now eating away at your brain cells. That’s ok, synapses, I didn’t really need you to be sending out any messages today. Go ahead, take the day. No, the week? Sure, go ahead.

Sometimes sleeping doesn’t even help. This is where Chronic Fatigue problems set it. You sleep and you sleep, but the fatigue never goes away. The quality of your sleep is zero. Your brain just doesn’t get the memo to recharge.

This is what I wrote in my journal about what fatigue feels like:

“{Today I have} the kind of fatigue that is so deep in your toes that you get nauseous from the effort to hold up your own head. Where the thought of your bed brings on such deep and heartfelt longing, as you are sure that once you get there, you will dive beneath the covers and into the pillows like you are diving into a deep, cool pool where the water envelopes you and you feel as though you are one with the element. Only, once you get there, you become excruciatingly aware of random bits of yourself that you never gave thought to- the sharp edges of your elbows, the hulking weight of your shoulders, the impossible pressure of your kneecaps holding your muscles in. It’s like living in a world where you are aware of gravity, where you can feel it- every ounce of force acted on your body by the atmosphere is holding your head below water like a bully who takes his game too far…”

So, you know, yucky.

I want to be her:

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But what I really am is him:

awake-at-3am

A bummer side effect of beta blockers is that they can cause or aggravate hypoglycemia (low blood sugar). As I already have low blood sugar, I fall into the “aggravate” category. I always eat right before I go to sleep, but if I am awake for a long stretch in the middle of the night I need to eat something in order to keep my blood sugar level. If I don’t, I get all sweaty, have palpitations and dizzy-fainty feelings, all of which I spend all of my waking hours trying to avoid. So I have crackers next to my bed, and if 3AM turns to 4Am turns to 5AM, I am snacking away in a desperate attempt to avoid symptoms.

Funny story, I developed this habit when I first started beta-blockers way back in 2009, and my midnight-snack of choice was Rice Krispie treats (pre-no gluten, those suckers have barley malt in them! You are RICE, friends, you are SUPPOSED to be safe! UGH!) in those crinkly blue wrappers. My sister came home from college for break, and the first night, I was up, munching away. Meanwhile, Sissy was wide-eyed in her own room, wondering WHAT ON EARTH all those weird noises were. Because, of course, the monsters under the bed bring snacks when they come to scare you =)

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I would actually really like these at 3AM, or you know, now…

ANYWAY.

I’m not really sure where I’m going with this. I feel like maybe I don’t have the brain power to have an actual point today.

Really, I just keep thinking, when the Prince kissed Sleeping Beauty, how did he know she wasn’t in the middle of REM sleep? Because interrupting a cycle can be really detrimental to one’s health.

And what if she was having a really good dream? I mean, personally, I wouldn’t want to be woken up if it meant that I wouldn’t get to find out what happens…don’t you just hate that? When you are just about to find out the meaning of life and your dog bursts into your room and jumps on you all “Let’s have breakfast now, pleeeeease.” It’s really frustrating.

But I guess if I had actually been able to get restful sleep for 100 years (one can only assume that magic fairy sleep would be the restful kind), maybe I wouldn’t mind. Maybe I’d like waking up, and then I’d sing to birds and mice, too. Perhaps I should cut myself off here, as now I’m just mixing my Disney Princess metaphors.

cinderella

#Cinderella

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The original Morning Person

My plan for the weekend: figure out how to get back on track with my sleep. Anyone have any good bedtime story suggestions? Have a great weekend, Chronics, and sweet dreams to you all ❤

Big Brother is Watching…My Heart

Bump-bump.

Bump-bump.

Bump-bump.

That’s the sound of my heart beating. Or at least how I think you would spell it out.

Sometimes it sounds more like this:

Bum-Bum Bum-Bum.

Bum-Bum Bum-Bum.

Bum-Bum Bum-Bum.

And other times it’s really getting a workout, like this:

Bu-Bu-Bu-Bu Bu-Bu-Bu-Bu.

Bu-Bu-Bu-Bu Bu-Bu-Bu-Bu.

Bu-Bu-Bu-Bu Bu-Bu-Bu-Bu.

It doesn’t slow down long enough for the –mp –mp –mp parts.

What strenuous activity am I undertaking when this speed up happens, you ask?

Um…Sitting on the couch? Standing in line at the grocery store? Walking from the car into the library?

As in, nothing special.

In fact I could be doing this, and it would still happen:

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I have 9 million pictures of Suki sleeping like a person with a pillow and blanket. She does this all the time #LoveHer

That’s just how it is, having a POTSy heart.

To clear up a misconception, POTS is not a heart condition. You will not find it on a list at the American Heart Association or any similar organization. It is an Autonomic Dysfunction disorder, a problem that starts in your autonomic nervous system, and then affects all of your bodily systems from there. Because your heart is SUPER IMPORTANT and heart function, and therefore problems with that function, are highly observable, POTS patients more often than not see a cardiologist as their primary “POTS doc”. Hence Agent Coulson’s visit to Iron Man on Friday (see Monday’s post, Agent Coulson’s Field Trip).

Things that are highly observable about your heart function (or my heart function, or anyone’s heart function):

Heart Rate/Pulse: You can count how many times your heart beats in a minute, simply by placing your fingers on the inside of your wrist or side of your neck at specialized “pulse points”. Any one with a stethoscope can listen to a heart beating and count the pulse that way. If your heart rate is higher, your heart is working faster and harder; slower, of course means the opposite.

Circulation: Checking the pulse in your extremities, most often the ankles, can give an idea whether or not your blood is circulating to those points. If your pulse is slow in your ankles, that means that they are not getting enough blood flow there. You can also see this, just by looking at your feet, because they will be a weirdo shade of gray or blue. If you’ve got too much blood in your feet, they’ll be purple or reddish, and this usually means that the blood isn’t making it’s way back up to the rest of you (a hallmark of POTS).

Blood Pressure: BP is made up of two numbers- the top number is called Systolic, and it tells you the pressure as your blood moves through your arteries WHILE your heart beats (the contraction). The bottom number is called Diastolic and measures the pressure BETWEEN beats (when the muscle relaxes and refills before contracting again). Blood pressure cuffs are everywhere, at doctor’s offices, at supermarkets, on my dining room table… So this is really easy and quick to measure and see.

Electrical Activity of your heart: Seen in an EKG, the electrical activity of your heart shows the rate and regularity of your heartbeats. I once read an interesting article that in a normal patient’s EKG, there is a LOT of variation, as their heart reacts to its environment (YOU). In a POTS patient, the EKG is looks too perfect- there is not the same variation, as a POTSy heart does not react efficiently to environmental stimulus. This could be the reason that blood pressure drops leading the heart rate to sky rocket- the heart is just slow on the uptake of realizing a change (usually in body position) has been made and doesn’t react to it the way it should. As soon as I locate that article again, I’ll post a link (Nic note: If you Google POTS EKG, it immediately will tell you what an EKG of someone smoking marijuana looks like. *Sigh* Thanks a lot, acronyms)

Your actual heart: Yep. And it’s weird. You know how when you see a sonogram of a baby, and it’s weird and wonderful, and kind of blows your mind, because when you are looking at a pregnant lady, you aren’t necessarily thinking about what the baby looks like in there? (Am I the only one who thinks of these things?) It’s kind of like that. You know you have a heart. Everyone does. But you just aren’t walking around thinking about what it looks like in your chest cavity, and then you go to the cardiologist and they order an echocardiogram, which is essentially a sonogram of your heart, and they bring it up on the screen and it’s like WHOA. So that’s what’s going on in there.

Because, not to burst anyone’s bubble, but your heart doesn’t look like this:

645px-Love_Heart_SVG.svg

It looks like this:

Heart iStock pic (1)So yes, a heart is a wonderful and magical thing that we can look at and marvel over. Doing so gives us a lot of information about how we feel. It doesn’t just apply to POTSies, but everyone. If your heart is beating, there’s a way to watch it, hear it, and feel it do so.

On Friday, my cardiologist decided that while I am often up close and personal with my heart and how it’s feeling, we needed to get just a bit more information about it.

Enter, the ZioXT, a continuous heart monitor that looks like this:

IMG_0693This sucker is going all Big Brother on my heart as we speak, watching its every move- well, beat. All day, every day.

It’s supposed to stay put for 14 days. Then I send it away to a lab in Somewheresville, Illinois where they will interpret my data and send a report to my cardiologist. The hope is to get a better sense of what my heart is really up to, as if it were a secret agent with a hidden agenda (I would not put this past my heart- he often goes rouge).

Personally, I hope that my heart is really this goofy guy:

strong-heart-cartoon-vector-illustration-32226984And that his response to his recent overactivity is somewhere along the lines of, “Hey girl, sorry I got overzealous with all that pounding, I’ve just been pumping iron (Literally!) to make YOU stronger!”

But that, of course, remains to be seen…

Agent Coulson’s Fieldtrip

Happy Monday, Chronics! Like I mentioned on Friday, I had to go in for a tune-up at the cardiologist. It was a never-ending appointment, as many are, and in order to make it more fun, I decided to bring along some friends. Here, for your reading pleasure, is the dramatic retelling of my Friday, starring Agent Coulson and Nick Fury, with special guest, Iron Man. If you have not read my previous post, Avengers, Assemble! you may wish to do so, as this post will make little to no sense to you without context. Unless, of course, nonsensical is your thing. Then by all means, continue. Previous posts can be navigated to over there in the left hand column. Enjoy! –Nic

Mission: Go to Cardiologist appointment at Hospital Center. Find out why Agent Coulson is blacking out more frequently and generally feels pretty gross.

Agent Coulson doesn’t like going to doctor’s appointments. You never know if you will be there for 5 minutes (wait for 3 minutes, see the doctor for 2 minutes) or for 5 hours (wait for 4 hours and 58 minutes, see the doctor for 2 minutes). Because of this, he has to pack for the worst-case scenario- that he will be there all day. It is hard to pack light for a worst-case scenario.

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Hydration is key.

Agent Coulson is not allowed to drive, as his run-in with Loki (a.k.a POTS) has left him altered. Good thing Nick Fury, fearless director of S.H.I.E.L.D, was able to rearrange his work schedule to help Coulson out. The fact that he only has one good eye does not hinder Nick Fury’s driving capabilities. He is Nick Fury, after all.

IMG_0704   IMG_0705

Once at the Hospital Center where the cardiologist is located, Agent Coulson must gear up for the waiting part of this endeavor…

But first, he and Nick Fury argue over who gets to press the elevator button. (Coulson won, it is his appointment they’re going to after all!)

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Waiting for the elevator at the busy Hospital Center can take nearly as long as waiting for the cardiologist.

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And then there’s that horrible elevator music.

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Dum, de, dum, dum, dum…

Nick Fury prides himself on his amazing sense of direction. One visit is all this mastermind needs to memorize the floor plan. Unfortunately, due to a battle-injury, Nick Fury doesn’t walk quite as fast as Agent Coulson, so he is forced to endure Coulson speeding ahead, only to turn around every 5 seconds to say “Is it this way?” “It’s a right here, yes? No, left, that’s right. Wait, right?”

IMG_0687 Eventually, they get to where they are going.

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I knew we’d get there eventually.

Agent Coulson and his companion find a seat. It’s comfy, with plenty of room to spread out.

IMG_0657After ½ hour of staring at the ceiling, Agent Coulson figures he might as well see what Mila Kunis has to say about all the hype surrounding her recent engagement and pregnancy with Ashton Kutcher. Engrossed, he is sure that a significant amount of time has passed, however, when he looks up, it is only 5 minutes later.

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#Bored

Finally, finally, Jarvis, computer assistant to Iron Man, calls Coulson for his turn. Nick Fury dutifully accompanies him. This is mainly because Agent Coulson has a tendency to forget things (not just directions), and Nick Fury is there to make sure Jarvis gets all the facts. He is very helpful that way.

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Got that, Jarvis?

Once Jarvis has recorded what’s been going on since Coulson’s last appointment, Nick Fury can relax. He so rarely has 5 minutes to himself, and he settles in happily, with the latest edition of his favorite magazine.

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#ZenFury

Meanwhile, Agent Coulson has to lie down, in preparation for his orthostatic testing.

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No, this exam table isn’t intimidating, at all.

Jarvis will have Coulson lie down flat for a few minutes, take his blood pressure and heart rate, then have him sit up for a few minutes, take his blood pressure and heart rate, and then have him stand for a few minutes and take his blood pressure and heart rate. Agent Coulson requested no photographs at this time, as orthostatic testing makes him pale and sweaty.

More waiting, and then finally, the cardiologist- I mean, IronMan, makes his entrance. The Black Sabbath soundtrack that always seems to follow Iron Man’s every move gently rouses Agent Coulson from the nap he has been taking on the exam table.

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Huh? The doctor’s here? What? Yes, I’m up…

Iron Man says, first thing’s first, let’s get an EKG. Coulson dutifully allows himself to be hooked up to various electrodes. This will test the electricity of his heart- something he doesn’t really get, but that Iron Man says looks good, so Coulson takes that at face value.

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Careful taking the electrode stickers off, Coulson, they’ll peel your paint!

Next it’s time for Iron Man to take a listen to Coulson’s heart. This takes some adjusting.

IMG_0674 IMG_0675 IMG_0676

Finally, Iron Man makes his recommendations, gesturing helpfully to a poster of heart function so that Agent Coulson can attempt to follow.

IMG_0683 Nick Fury, ever helpful, takes notes in—What else?—Agent Coulson’s Avengers notebook where he keeps all his medical info.

IMG_0703

Take a beta blocker at bedtime, got it!

Tests are ordered, medication is called in to Black Widow at the Pharmacy, and just like that the appointment is over. Agent Coulson thanks Iron Man for his time.

IMG_0663The day is far from over, however, as Iron Man has given Agent Coulson a form to get bloodwork done, downstairs in the lab. Coulson would rather wait till Monday, as he is very fatigued from the effort of it all, but Nick Fury convinces him that they might as well get it done while they are here. More elevators, more waiting.

Agent Coulson wants to document this continued portion of his mission.

But the lab looks like this:

Scary_Dungeon_by_Craig_Stiff

But cleaner, of course

And the phlebotomist looks like this:

eddiemurphyvampireinbro

NOT AN EXAGGERATION…ok, maybe a little…

So he doesn’t dare.

By the time all that is done, night has fallen. Nick Fury and Agent Coulson trudge back to the car. They got some good information out of Iron Man today, and things are looking up for Agent Coulson. He has to wear a continuous heart monitor for the next two weeks that tracks his every heartbeat, and they’ll stop by the pharmacy to see Black Widow about his new meds on their way home. A quick dinner, maybe read a few chapters of his favorite book and it’s in to bed for Agent Coulson.

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#BedtimeStories

He is exhausted!

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Agent Coulson prefers stuffed elephants to Teddy bears…doesn’t everyone?

Mission Complete =)

Happy Friday =)

Good morning, Chronic readers! I am spending a large chunk of my day at the Cardiologist this lovely Friday. Apparently, my heart thinks that 105 is the new 70 when it comes to resting heart rates (NOT COOL, HEART, NOT COOL). So I’m a bit uncomfortable. Just a teensy bit. *Please note sarcasm, thanks –Nic*

Health flare ups, symptom episodes, whatever you want to call it when your body decides to spaz at you for no reason, are not fun. However, I’m not going to let it take over and beat me down. It might seem Pollyanna-ish, but I choose to be as positive as possible. Why wouldn’t I? When you have a chronic illness, it is guaranteed that at times your health with spiral into some level of ick. I don’t want to make that hurt any more than it has to by dumping a heap of negativity on top of it. I prefer rainbow sprinkles as a topping, thank you.

So, friends, this is me:

8502_585011084865471_1986760422_n

What about you?

Have a great weekend. I’ll be back with a full length post on Monday =)