The Journey of 10,000 Steps

You guys.

I got a FitBit.

I know, I know, as per usual, I am 100 years late to this trend. When I try to tell people how awesome it is to be able to track my steps and my sleep and my food and my heart rate all at the same time, they are like, “Yep, yes, uh-huh, welcome to 2013, you are only 4 years late.”

However.

I am very excited.

First of all, I didn’t have to spend a gagillion dollars on the special EKG heart rate monitor for your iPhone something-or-other that my cardiologist wanted me to get because the FitBit Charge 2 that I have shows you your heart rate stats from throughout the day.

Example:

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Short digression: Um, wow? Hey peaks and valleys and reasons that everything feels screwy right now! I guess I am naturally pre-dispositioned to be in “fat burn” mode for the majority of my day. I should create an infomercial…No exercise required, all you need is a life-consuming chronic illness and you too can burn fat all day long! Or something…

PS: Super nice that my resting heart rate is 81; sucks I am apparently never resting though. #POTSyLife

ANYWAY.

Back to the story.

I had no idea how much I don’t move.

Like, ok, I had an idea.

Because you know, my futon couch has a permanent impression of where I park myself every day.

But really.

I had no idea.

Once upon a time, a long, long time ago when I was much, much worse (like 2009-ish), I bought a cheap plastic pedometer from Target for $5 and it told me that in the course of my POTSy day, I moved 250 steps. That’s it. I thought it was broken. But really, 250 steps is roughly the equivalent of 2 trips downstairs for food and a half dozen bathroom visits. Which is kind of all I did in 2009.

I figured that by now, in 2017, I am so much better that the 10,000 recommended steps that I, as an American citizen, am strongly urged to get by the Powers That Be and Numerous Celebrity Fitness Trainers, would be No Big Deal.

Um, yes, well, about that.

2015 Me would be all over it. 2015 Me was running all the time and was a mover and a shaker, as the kids say (or did in 1975…).

2017 Me got a bit dejected as my FitBit proudly announced that on an average day without me going out of the way to exercise or move much (so, like every-ish day right now) my grand total of steps was just over 2,000.

Blehhhh.

Before I had actually used my FitBit to track anything, I had set my goal for steps at 7,500. I figured that was a safe estimate for days when I felt a bit rough and wasn’t up to knocking out those easy 10,000.

AHAHAHAHAHAHAHAHA.

Sorry.

Sometimes you just have to laugh at your own very grave miscalculations, you know?

This is my second full week of tracking, and the steps are easier to get because now I am paying So Much Attention to it, which clearly I needed to be doing. I like that my wrist buzzes to remind me to move around if I haven’t made 250 steps in the current hour. Though it does get annoying when it interrupts my daily nap(s), of which I am taking fewer, if only because it is hard to fall asleep when your brain is all, “You could totally be marching in place right now.” I’ve come to find that my brain lights up just as much as my wrist does when I meet my step goal and my FitBit buzzes and throws me a tiny virtual parade, so you know, incentive.

I’ve even made it to 10,000 steps. Twice.

*Hey Chronic Friends, do you know me in real life? Be my FitBit friend! You know, if that’s still a thing…

 

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The Saga Continues…

Exactly how much radioactive material must I ingest or be exposed to in order to qualify as a Marvel hero?

I mean really. I am expecting Professor X to show up on my doorstep any day now.

If Magneto is with him, all the better. I promise not to blow them up a la Jean Grey.

You know, if I can help it.

Healthcare can be really weird some times.

Case in point- when you go to the hospital, walk through the door labeled “Danger: Radiation Warning,” plop down on a table, present your arm to be injected with radioactive tracer material, and then settle in for a giant machine to pulse radiowaves at you for an hour and a half to take pictures of said tracer moving through your insides.

No, I’m not an extra in a Marvel flick, I just got a HIDA scan to see if my gallbladder is necrotizing slowly and painfully. (Yeah, I just pulled out some fancy medical jargon. Necrotizing sounds so much nicer than dying. Ew.)

This is not my first foray into getting pumped full of toxic material in the pursuit of optimal health.

Ever hear of a gastric emptying exam? It’s a test for gastroparesis (stomach paralysis) in which you have to eat the most gigantic pile of scrambled eggs ever that have been seasoned with radioactive material. Then a machine takes pictures of the radioactive bolus traveling through your digestive tract.

Mmmm, radiation.

#BreakfastOfChampions

Ok, wait, saying that the scrambled eggs are “seasoned” with radioactive material is an understatement. They are actually soaked in weird “odorless,” “colorless,” “tasteless” radioactive liquid that I am pretty sure was leftover from that scene in the Princess Bride when the guy who says “Inconceivable!” all the time keels over. Now I’m just mixing my metaphors, but perhaps being immune to poison (it literally says “Caution: Toxic” on the label before they pour it all over the food you are about it eat) is my personal X-(wo)Man gift?

By the way, I haven’t been able to bring myself to eat scrambled eggs since. I knew someone who got to have a radioactive donut- she wouldn’t eat eggs, so they spiked her Krispey Kreme. I want to know why I didn’t get that option.

ANYWAY.

Back to my radioactive exposure.

The HIDA scan was virtually painless; the most excruciating part is waiting for my doctor to get back to me with the results (um, it’s been a week, friend, get it together please). I couldn’t help but wonder where that radioactive tracer’s final destination might be though. It was injected intravenously, so it could really make the rounds before being erased by my immune system. When you have to entertain yourself for 90 minutes of holding still, it can be quite fun to think of all the superpowers you might end up with at the conclusion of the study.

Maybe I’ll end up with super speed as it makes the rounds through my legs…

Maybe I’ll suddenly have a photographic memory because the radiation got lost on the way out and passed through my hippocampus…

Maybe I’ll stop aging and look 26 forever…

Bruce Banner had Gamma radiation.

Peter Parker was bit by a radioactive spider.

Captain America was injected with Super Soldier serum.

The X-Men have varying mutations brought about by weird genetics.

I’m pretty sure that, at the very least, I glow in the dark now, so when do I get my Marvel membership card?

 

You never know how strong you are until Shit happens.

Forgive the title.

I mean it literally.

In related news, I have some sort of weird stomach infection…

I’ve actually been sick on and off for about 3 weeks now.

Nope, Chronic readers, as much as I wanted to, I did not hang up my Chronic hat and ride off into the sunset of gainful employment and desert you.

I’ve just been spending all my free time throwing up.

I managed to continue to work through the agony up until this past week. I had already arranged to have time off for Thanksgiving. (Happy Belated Turkey Day, my fellow Americans!)

This is the picture I posted on Facebook on Thanksgiving. The caption was, “These are our ‘When’s Dinner?’ faces.”

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Except, I didn’t even really eat dinner on Thanksgiving. This is what I really did on Thanksgiving:

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#SocialMedia #LiesWeTellOurFacebookFriends #AtLeastMyDogGetsMe

I’ve had to take additional time off from work this week, because when you get to the point where you are so sick you don’t even want to look at food anymore, it’s high time you head on over to your friendly neighborhood emergency room.

It’s making me kind of crazy, this first foray into being super duper acute sick while navigating my newfound employment. I had been doing so well: Visions of Sigourney Weaver ‘Working Girl’ greatness danced in my head (I’ve been saving up for a kick-ass power suit), and Donna Sommers’ power ballads have been echoing on repeat in my ears, just for good measure- I work hard for the money/so hard for it honey/I work hard for the money so you better treat me right…

But sickness snuck up on me.

I actually just typo-ed and wrote “ickness” which I think is a more accurate description.

I won’t gross you out with excessive details, but pretty much everything icky your digestive system can do, mine is doing with a vengeance. I’ve had every icky test where you have to drink icky stuff so they can take icky pictures of your icky insides. I have been poked, prodded, and stuck. So far they aren’t sure what’s wrong beyond knowing something isn’t right. Super helpful, n’est pas? It’s not just an average cyclical vomiting spell either. There’s a whole lot more going on, but “what is it???!!” is the million dollar question.

In the meantime…

Best thing about overnight hospital stays? So. Much. Saline. Saline is my favorite. I wish I could take it home with me. Someday I will write a whole post dedicated to my love of saline and the incredible difference that being venous-ly hydrated makes.

Worst thing about overnight hospital stays? Everything else.

I didn’t sleep more than a few hours due to hourly poking and prodding. The bed was weirdly squishy. More than 1 person said I was “too young” to be so sick to my stomach (Which was weird in context because don’t kiddos get diarrhea? Like a bunch? I didn’t think only old people had cornered that market…) I haven’t eaten since Sunday, except the 4 cups of hospital jello I hoarded like a maniac and then “savored” bite by tiny bite.

Reaction to 1st cup of Hospital Jello: Sweet manna from heaven! Thank you, Lord! Has anything ever tasted so good?

Reaction to 2nd cup of Hospital Jello: Ok, so yeah, jello and I are friends. But not like best friends, just like good friends, you know? Like I wouldn’t invite jello out for 1-on-1 time, but if I needed to beef up a guest list, jello would be on it.

Reaction to 3rd cup of Hospital Jello: Who the flip brought me orange jello? Why is there even such a thing as orange jello? Why does this taste like someone melted an orange popsicle and then left it in a lukewarm fridge for 3 weeks?

Reaction to 4th cup of Hospital Jello: I am never eating jello again.

Wait, what’s that you say? Jello is the only thing I can eat for the next 48 hours while I await extensive GI workup testing?

Whyyyyyyyyyyy, Universe, Whyyyyyyyy?

I brought a book, but I didn’t read it.

There was a TV in the room, but I didn’t watch it.

Mostly I stared at the ceiling repeating my name and birthdate in my head over and over because everyone kept asking (ID verification), and the morphine they gave me made me weirdly panicked that I would suddenly forget this vital information, which would mean that they wouldn’t give me more Zofran. And I needed that Zofran.

Yeah, morphine is going on my “Please don’t give me this” list. STAT.

When I wasn’t doing that, I was, of course, writing this blog in my head.

I have missed writing, but I can honestly say, I have not missed having Chronic things to write about.

But what can a Chronic girl do?

Shit happens.

 

Burgers. Fries. Happiness.

Nic Note: If you are a Chronic blogger named Brittany, who happens to be pregnant and has a resultant Ketchup aversion, this warning is for you: THIS POST CONTAINS KETCHUP. Also, Hi. Also, Yay Critter!

I’m in a foodie mood this week, Chronic readers.

I’ve posted before about how when you have POTS, you need to eat a diet high in sodium, and so most cardiologists grit their teeth and tell you to eat everything that they usually tell patients not to eat. It’s a medical necessity that I eat things like potato chips, pretzels, and pretty much any kind of fast/processed food you could think of.

That being said, while eating that way makes me feel like magic for about 15 minutes afterward, it’s not a great long-term diet plan for anyone, high sodium need or not.

I tend to eat incredibly basic (and boring food). It’s actually kind of trendy right now- I “eat clean” and was “paleo” before your Cross-fit friend gave up carbs (though I have yet to give up potatoes, as they are probably the only reason I am alive right now #MajorFoodGroup).

But you know what? Even the most healthy-eating Chronic needs a burger and fries sometimes.

So I made this up.

Behold.

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Nic’s Deconstructed Hamburger Bowl.

Step 1: Brown hamburger meat. Drain any grease (no one needs that).

Step 2: Microwave 2 small red potatoes until fork-tender.

Step 3: Gather favorite hamburger add-ons.

Step 4: Construct the deconstructed. Cut up the potatoes. Pour hamburger meat on top. I like to add cut up pickles (healthy sodium!). Then I pour sugar-free ketchup (Heinz Simply Heinz brand) all over it and eat it with a side salad.

I made it pretty for the picture, but usually it’s an ooey gooey mess of the best tastes of a burger and fries without the greasiness or the heavy I-wish-I-hadn’t feeling. Yay! Plus it’s super quick and doesn’t need a lot of attention, so if you’re feeling brain-foggy or tired, you can still eat well- and that’s something we can all feel happy about. 🙂

Make my day, then break my day, why don’t you General Mills?

There are a few highly processed, yet magically delicious foods that as a celiac disease sufferer, I am destined to live without.

Wonder Bread, PopTarts, Cheerios…

Wait!

Cheerios!

I admit, I’m late to the party thrown by General Mills in conjunction with the Celiac Disease Foundation.

This is how I found out that General Mills decided to make Cheerios (in nearly all flavors) gluten free:

Scene: Whole Foods.

Nic (disgustingly healthy boring food in hand) walks through the cereal aisle to get to the checkout counter.

*Sighs Heavily*

Nic: Oh my gosh, I wish they made good tasting food gluten free. Like cereal! It doesn’t even make sense that oat cereal isn’t gluten free. I wish so much that I could eat Honey Nut Cheerios. I have developed weird tastebud memory- I can still remember what they taste like and it’s cruel that the imitation companies expect me to think that “Gluten Free Yummy O’s” or whatever taste anything like real Cheerios.”

Mom: What do you mean? Cheerios are gluten free now.

Nic (stops dead at the end of the aisle): What? No. I would have heard that. Where did you hear that?

Mom: On the radio.

Nic (rolls eyes): No. No way. I don’t believe you. You shouldn’t mess with me like that. Psh. On the radio…

Mom (rolls eyes just as fervently): Go check. I mean it. It’s real.

Nic pauses skeptically then goes tearing back down the aisle.

Nic: No way. No. Way. Oh my gosh. The radio was right! (Hugs box of Honey Nut Cheerios. Voice jumps at least an octave in excitement) This is the greatest day. No seriously, like you have no idea how happy I am right now. I mean, my life is CHANGED.

Nervous fellow cereal purchasers move away slowly from deranged girl having a euphoric Cheerio dance party in the middle of the aisle.

Close scene.

I’m too embarrassed to reveal the level of cheer(ios!) I reached when my sister came home from Costco with a double value size 2-pack. It was intense.

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Nearly as intense?

Yeah, that would be my level of freakout when I heard that some boxes of supposedly safe Cheerios had been contaminated with wheat (gluten!!) at a factory in California. I happened to read that on the Internet at the same moment I was busy shoveling some honey coated goodness into my mouth. Fortunately, my Cheerios were not from a contaminated batch (if they had been, I would probably have to have my entire digestive system replaced due to the excessive amount of Honey Nut Cheerios I’ve been ingesting) and I triple checked the labels. Luckily, there’s a whole country of fly-over states keeping me a safe distance from contaminated cereal products. #EastCoastSnob

This glutenizing snafu did put in perspective though how even if a traditionally gluten-filled company has the best of intentions, accidents can still happen.

Personally, I’m pretty cranky that PopTarts isn’t even trying when other companys/products are quickly populating their shelves with gluten-free versions (Oh hey, Eggo waffles! Long time no see!) because I used to live on PopTarts (at least on every other weekend and some holidays) and I would probably lose my mind if they made them and they tasted like the real thing (which are just sugar and butter anyway- how hard can it be Kellogg’s?).

But I do understand the hesitation. For Celiac disease sufferers like me, a contamination isn’t just an upset stomach and a return of the unused product. Rather, it can mean intense, unrelenting pain on the “mild” end of reactions, and damage to intestines and other organs through the autoimmune response gluten activates on the “severe” end. Not many companies want the responsibility. I get that.

Part of me applauds General Mills (THANK YOU FOR MY CHEERIOS!) while another part of me remains skeptical that they can pull this whole partial-switch thing off (other General Mills cereals remain bottomless pits of gluten).

I do appreciate their efforts though.

I mean really, have you ever had a bowl of Gluten Free Yummy O’s?

Bleh.

My mid-afternoon snacktime is now legitimately yummy.

Mmmmm Cheerios…

 

Check your Cheerios Chronics!

http://generalmills.com//en/News/NewsReleases/Library/2015/October/cheerios-10-5/645b5aaf-c2ec-4661-b968-391f41953bfc

Celebrities are just like us, Part 2

Alternate title for this blog post: Selena Gomez has Lupus, reacts like every Chronic girl ever.

You guys.

You’ve probably heard the news by now.

Remember how Selena Gomez disappeared for a little while somewhere in between being a doe-eyed Disney screen queen and becoming Taylor Swift’s #1 BFF? (No? That’s totes ok, Chronics. I’m more of a #TeamDemi, too, but let’s go with it.)

Tabloids speculated that she had entered rehab to hide out after her breakup with Justin Beiber. Had she turned to drugs? Was she teen-pregnant? Was she <Enter Salacious Untrue Assessment Here>?

None of the above.

Selena was in fact, chronic busy (See previous post: https://iamchronicallywell.com/2015/07/08/the-busy-bee/ )

While paparazzi camped outside her house, making up the craziest stories they could think of, Selena was tucked away inside dealing with the reality of moving forward in life with a chronic illness. She recently revealed to Billboard magazine that she has Lupus.

“I wanted so badly to say, ‘You guys have no idea. I’m in chemotherapy. You’re assholes,’ ” she says. “But I was angry I even felt the need to say that. It’s awful walking into a restaurant and having the whole room look at you, knowing what they’re saying. I locked myself away until I was confident and comfortable again.”

I feel you, girl.

Mmmhmm, your Chronic friends hear you loud and clear!

I “disappeared” the 2nd semester of my senior year of high school. Sometime after my birthday in February, my insides just decided to be done. I couldn’t get out of bed. I couldn’t shower. I thought I was just going to die from all the <yuck> my bodily systems were inflicting on me.

Pretty much <zero> people reached out to find out what was going on with me. When I showed up to the Mother-Daughter Senior Luncheon out of the blue in May, determined to remain conscious for the 1-hour my mom had promised to take me for, I’m sure it was a little confusing for my classmates who hadn’t seen me in a while. I know it was confusing for me, especially when one girl came up to me in the buffet line and laid it all out for me:

“So are you, like, in rehab or something? I mean, if you don’t want to tell me, that’s fine, but like, I know other people who have been, so like, you could totally tell me.”

I had spoken to this girl approximately 1 time in our shared high school experience, and I’m pretty sure that was to say, “Excuse-you!” when she bumped into me forcefully in the hallway.

It’s weird, to be going through something that is huge and monumental to you, and you don’t know what it is or what it means, or how you would even begin to deal with telling people about it. It’s weirder to find out that other people have been <falsely> filling in the blanks on your behalf.

Every Chronic has someone or a group of someones that we want to be like, “Yeah, but you know what…..!!!!!” and then spew about how hard/awful/difficult our Chronic lives are. We are angry, we are resentful, we are…

Hurt.

Yes. Quite simply, we are hurt.

Selena says: “I felt like I’d lost everything,” she says. “Just because it’s not plastered everywhere doesn’t mean I didn’t have my rock bottom. I’ve had my moments, and it’s almost unsafe for me to even talk about them, because I’ll be taken advantage of.”

Sure, Selena Gomez is talking about being taken advantage of and hurt on a scale that most of us can’t imagine- no one wants their personal heath situation debated on TV, the internet, and by jerk-face radio jockeys. But her sentiments really hit home. When you are in crisis-mode, you can’t see out. Being a baby-Chronic (as in newly diagnosed) is by far the scariest, most lonely time. The line between over-sharing and asking for support or acknowledgement is so misty. Where is it? Who do we trust-really? Who can handle us and all our Chronic baggage?

Selena seems to have a good support system (we should all be so lucky as to have a Taylor Swift-like bestie). Her parents live close and she has the financial freedom to pretty much do nothing for as long as she wants to/needs to seeing as she’s been a working actress/singer/celebutant since she was 7. But even with all of that at her disposal, when it comes down to it, she is the same as every other Chronic girl out there- glad to be moving on from the shipwrecked life of her past and swimming towards the shore of her healthier future.

“Gomez quotes the worship band Hillsong United to illustrate where she’s at now: “I touch the sky when my knees hit the ground.” Her lupus is in remission, and she says the key to staying healthy is “diet, routine and medication,” plus keeping the right kind of friends around.”

That’s all any of us can do as Chronics. In truth, as hard as it was for her, I’m glad that Selena decided to talk about her illness publically. I mean really, if anyone is going to get a “But you don’t look sick!” it’s going to be this girl:

selena-gomez

The fact that she is honestly sharing does so much simply because it publically reinforces the idea that you can’t know what’s going on in a person’s life just by looking at them. So thanks, Selena, for being brave enough to be just like us ❤

 

Read the full article: http://www.billboard.com/articles/news/cover-story/6721941/selena-gomez-revival-album-taylor-swift-justin-bieber-lupus-empowerment

They tried to make me go to rehab…

…Physical therapy rehabilitation that is.

And I said NO NO NO.

A while back I posted about having hurt my foot; it was determined to be a stress fracture in my calcaneus (heel bone). Every 2 weeks since the end of August I have hobbled on over to my friendly neighborhood orthopedist who declares me “headed in the right direction” and sends me home still confined to my boot-cast.

September has been an incredibly long month.

I am not one to let things go, and I certainly wasn’t about to sit around and become my couch while waiting out this heel injury, even though I had been given medical license to do just that. My doctor had laid out an extensive plan that included “wait-and-see” for 6 to 8 weeks followed up by physical therapy for another 6 to 8 weeks, as all that “wait-and-see”-ing around actually sets one up for more injuries as you are weakening the area by keeping it tucked snugly into a cast all the time.

He said I could think about running again next year.

Yeah, not gonna work for me.

Ok, ok, I did spend a week (or two…) like this:

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This is what injured runner depression looks like. I’m pretty sure Runner’s World does not endorse Jumbo-sized marshmallows as part of their Nutrition Special…

Nothing beats Rest Ice Compression Elevation with a hefty dose of self-torture. And crying. And marshmallows.

I even had some friends sign my cast since I figured we’d be spending a whole bunch of time together and I could use the love:

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But then I looked in the mirror and said, “What are you doing, girl? This is why you started running in the first place- so that you would be different! So that you would act and re-act differently! Don’t go backward! Go forward!”

So I headed over to my friendly neighborhood library and got my autodidact on.

#SelfTaught #TheresABookForThat #LibrariesAreImportant #SaveTheLibraries

I picked up a copy of Joseph Pilates’s original works, Return to Life Through Contrology (1945) and Your Health (1934). Even 70+ years ago, Mr. Pilates knew what was up. I find it’s always best to go back to the basic basics when researching because too much current information and newer publications are cheap reincarnations of someone’s earlier, more substantial work. (See <every self-help guru ever> ripping off Napoleon Hill 1937 and Dale Carnegie 1934)

What we now call “Pilates” or the “Pilates method” is what the man himself called “Contrology.” The short version is that Mr. Pilates had been a very sickly child (#ChronicLife) and studied various forms of gymnastics and martial arts to work his way back to health. He created a series of exercises (y’all must know about The Hundred) that he felt were essential to building strength. They focus mainly on the core muscles (back and abdominals). Essentially, it is the original body rehabilitation method, as most exercises can be done by anyone at any level of fitness with little-to-no impact on joints.

Ok, so I do not need my heel to do Pilates. Check.

I can strengthen all my muscles with Pilates while I’m literally sitting out of the running game. Check.

There are a multitude of free Pilates videos available on Youtube, so I can create my own rehabilitative program at home, by myself, for free. Check.

After much deliberation, I decided to follow Blogilates, because Cassey Ho not only stays true to real Pilates method and technique, she is also super adorable and makes her videos really fun. She’s a life coach and a fitness instructor rolled into one, which I don’t mind because let’s be honest: No running = A whole lot of 😦 I could use the perking up.

One month of following the Blogilates calendars (which tell you exactly what to do and when #Easy) and Joseph Pilates’s timeless advice (no sugar, lots of veggies, and something called “dry brushing” in which you scrub your dry skin with a dry loofah to improve circulation), and I am boot-free my friends! It’s kind of a miracle. #WorkedForItThough

I can also do this now, so you know #Bonus:

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#Starfish #SidePlank #Selfie #Multitask

I have been reminded very sternly not to get too excited. I have to transition first to regular sneakers, worn all the time. Good thing skimpy sandal season is over! Boots are also good supports. (If I can get over my recently developed aversion to them!) I can take walks.

But…

I don’t have to go to rehab!

My doctor was uber impressed that my leg and foot muscles were not weirdly limp or deconditioned. In fact, he seemed almost confused at my improvement.

That’s what happens when you take care of business. #MikeDrop

Bonus: I only have to wait 1 more month before I can safely start to (slowly, slowly!) start jogging again!

Life lesson: Doctors are smart, but you can be smarter, at least about your own body. If your doctor gives you advice or a treatment plan that you aren’t crazy about, research it! Figure out if there are alternatives. Read, read, read! The internet is great, but sometimes the best answers can be found in long-forgotten books from 80 years ago.

 

Have you ever done Pilates, Chronic reader? If so, how did it go? I am slightly addicted now and am even looking for a (cheap) gym that offers classes on the reformer- which looks like a Pilates torture chamber of doom, but is actually supposed to help you get even stronger.

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Me, next week? #Goals

PS: I’m on Instagram now! Follow me and let me know if you are doing the #dysautonomiaphotochallenge so I can find you!

#BeAware

Happy Invisible Illness Awareness Week, Chronic readers!

I know the week is almost over (YAY Friday!) but that doesn’t mean I can’t squeeze in some last minute awareness.

Dysautonomia Awareness has been on point this year. Some highlights include an appearance by a POTSie on the TV show The Doctors and having Niagra Falls lit up in turquoise for Dysautonomia Awareness Month (October, which means right now!) last night from 10 to 10:15 pm. Talk about a great way to get 15 minutes of fame!

If you are a Chronic or have Chronic friends, you have probably seen at some point this week a questionnaire about invisible illness. I filled that out last year, so I won’t repeat it. You can read that post here: https://iamchronicallywell.com/2014/09/10/invisible-illness-awareness-week/

What I really want everyone to be aware of this year is pretty simple: Everyone’s got something.

Human beings are pretty good at poker faces. Sure, there’s a wide variety (I, for one, always loose at poker because excitement is my eyebrows’ favorite emotion), but mostly, we are fairly adept at keeping up appearances. There are really very few visible afflictions.

It’s ironic then that our natural inclination is to judge by appearances, when we know logically that appearances do not give a full or even truthful account.

So do your part- be aware of this disparity.

Give everyone the benefit of the doubt.

Judgment is ugly, and I can tell you, that kind of ugly definitely shows up on your face.

I love that Ellen Degeneres closes her daily talk show now with the simplest of phrases: Be kind to one another. It’s something that every one of us needs to be reminded of.

Yes, the world would be a better place if funding was given to this disease and that disorder and so on. I am first in line when it comes to lobbying for treatments and cures. I do, however, realize that that aspect of awareness is a marathon, built solidly over time.

Kindness is not a marathon. Kindness is instant gratification. Kindness makes a difference right now, today.

Everyone’s got something– physical or mental illness, emotional distress, turmoil in some form. Just because you can’t see it or recognize it does not mean that it’s not there.

Treat everyone as you would like to be treated- or better!

Kindness is free, and it’s the best way to donate. #BeAware

 

Locks of Love

Once upon a time, there was a little girl who wanted to grow her hair very long, like a fairytale princess. She saw other little girls with their long, flowing hair, and thought, Yep! That is the look for me!

But this little girl had a very confusing medical condition. When she would stand up, she would fall down, sometimes even passing out completely! This made doing lots of normal little girl things very difficult, and sometimes even dangerous. In addition to falling down, the little girl would get very sick and tremble and shiver if she got too cold or sweat and melt if she got too hot. Sometimes she would get cold when everyone else was warm and sometimes she would get warm when everyone else was cold. It was hard to keep up, and the little girl was very disappointed. She had trouble washing her hair and drying it. It felt heavy and when she put it in a ponytail, it made her head ache. Some of the medications she took even made her hair fall out more than it should, and she began to think everyone could see the thin spots at her temples.

The simplest solution was to cut it. It made the little girl very sad because every time she looked in the mirror, it reminded her of all the normal everyday things that had become so hard for her.

As the years went by, the little girl kept her hair short. At first, she put color in it to make it more exciting, but soon the chemicals also made her sick and she had to stop. Headbands, barrettes, or any kind of pretty hair thing could set off a headache or a pinch or a pull that would make her very uncomfortable.

So she left her hair alone.

The little girl tried very hard to take care of herself. She saw lots of doctors and tried lots of things to feel better. After a lot of things not working out, the little girl finally figured some things out and slowly but surely, she got a little bit better.

Year after year, the little girl improved just enough that she could see she was headed in the right direction. It may not look like much to others, but the little girl knew she was finally coming out from under the dark cloud that had followed her for so many years.

During this time, the little girl continued to leave her hair alone.

She could tell she was stronger because she was able to wash her own hair again. She could tell she was improving because she could finally hold the hairdryer and withstand its drying powers for longer and longer periods of time.

Pretty soon, the little girl realized that her hair was growing…and growing…and growing! All the things that she did to help her health seemed to help her hair be healthy too. She also noticed that her hair wasn’t quite the bother and trigger for symptoms it was once was.

So she left it alone.

The little girl’s hair grew and it grew. The little girl learned to run, and she was happy. She hurt her foot, but she learned not to give up, and she was happy. The little girl moved to a new castle, even though it was scary, and she was happy. She figured out how to make new friends and stay in touch with older ones, and she was happy. The little girl looked in the mirror and saw with each inch that grew out of her head how many inches she had grown in life, and she was happy.

Now, the little girl’s hair was very long and very strong, and very much like that of a fairytale princess. It was everything she ever wanted. She braided it in fishtails and frenches. She brushed it and used fancy conditioner that smelled yummy and made her hair soft. She took very good care of this precious gift whose importance she only knew.

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Then one day, the little girl found out about another very confusing medical condition that other little girls (and boys!) have. The condition causes their hair to fall out or not to grow at all. No matter how well the rest of them was, these little girls could not grow their hair to be like fairytale princesses.

Knowing this made the little girl sad, but then an idea occurred to her that made her very happy: She could give her hair to another little girl, so that she would be happy as well!

So the little girl asked her mom to use her magical Waldorf Astoria Salon-trained haircutting skills to cut her hair. At first her mom was surprised, but when the little girl told her why, she readily agreed.

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11-inches later, the little girl had short hair again. She giggled that even detached from her head, her hair retained its magical powers of personality as it fashioned itself into a bouncy flip as it waited to be sent away to its new owner.

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The little girl had expected to be sad. She expected to feel like she did all those years ago when she had to cut her hair because she was sick and weak.

Instead, she felt incredibly happy. Now when she looked in the mirror at her short hair, she saw someone who helped others, someone who had something to give. She realized that she didn’t lose something, but had given something freely.

The fairytale princess hair that had been such a treasured gift to the little girl would now be a treasured gift to someone new.

And this, the little girl knew, was the greatest gift of all.

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Is your hair super long, Chronic reader? Considering a major haircut? Donate your ponytail of 10 inches or more to Locks of Love, an organization dedicated to making wigs for children who need them but can’t afford them. Their supply mainly goes to children with Alopecia, an autoimmune condition that causes hair loss. You can learn more about Locks of Love here: http://www.locksoflove.org and about alopecia here: https://www.naaf.org/alopecia-areata

 

 

Wake me up when September ends

Pardon me, I seem to have misplaced the month of September.

Have you seen it?

It’s been a long time, Chronic friends!

I really didn’t intend to go MIA for an entire month. But when has that ever stopped it from happening?

So where have I been and what have I been up to?

Well, I moved.

My Chronic thoughts on that?

Moving is awful and stressful and ohmygosh avoid it if you can!

Yeah, so it’s probably better that I wasn’t spilling my guts to the inter-webs at that time. My updated Chronic thoughts on that?

Moving is the best and ohmygosh everything is so much better now! Daisies and rainbows and unicorns and MOVING! YAY!

Which is why I’m writing now, and not then.

My move was relatively tiny, but it was very involved. In the interest of not sharing too many personal details, I’ll instead show you a few of the nifty projects I’ve been buried under- I mean, happily undertaking- this month.

Outdoor Furniture

My big thing was that I really wanted a firepit for my backyard. Like sooooo much. Because what is more fun than s’mores? You’re right- nothing! S’mores are the best, and we have an electric stove which is not conducive to lighting marshmallows on fire. Microwaving is a cheap shortcut. I want legitimate campfire burned-up gooeyness! Post-summer season sales meant I made my firepit dreams come true for $34.98 at Walmart. But where would we sit?

I inherited a pair of these outdoor wooden rocking chairs:

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………………………yeah.

They were in pretty rough shape- literally. I sanded these things until kingdom come. Then it was time for a bright and happy fresh paint job and some cutesy clearance pillows from Homegoods and Voila!

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Now I can happily rock off into the sunset while getting my pyromaniac on. #TrueBliss

Futon

Know what’s comfy? A couch. Know what’s comfy and muli-functional? A couch that folds out to a queen size mattress! Know what’s not fun? The fact that most places sell futon covers for full-size mattress fold-outs. That would mean we’d be missing a number of essential inches, which would be well, uncovered. No good, my friends, no good.

Know what is good? The sale on canvas at Joann Fabrics that meant that I got to make my own futon cover (and matching pillows!) for less than I would have spent to special order!

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And ok, I’m not going to lie, it would have been way less effort to click a button and have a cover magically delivered to me, but I had to do something with my time while I was waiting for my furniture to be delivered. (It took 20 days past the original delivery date to get here (?!) Do not trust Value City Furniture- sure it’s good stuff for cheap, but you might never ever receive it. #SoMuchFrustration.)

Also, next time, I’m going to make sure the fabric I choose has a little bit of stretch to it- it’s a real pain to try and shimmy an unrelenting canvas cover onto an oversized mattress at 10 pm the night before your housewarming party. Just so you know.

In addition to my projects, there have been closets to paint (mine is pink, just for funsies), cabinets to organize and drawers to line. There have been customer service people to fight with, service people to cry to, and automated voice services to curse at (“I’m sorry. I didn’t quite get that. Please repeat your selection.” &#$% you!).

It’s been a long month, but now that my Internet has been reconnected and I have stories to share, I am back!

I hope you’ve all been Chronically Well in the meantime, and I’ll see you again later in the week!  🙂