The Graduate

BIG NEWS: I graduated from college!

It took 10 years, an exactly perfect decade from August 2007 to August 2017.

I’m exhausted.

But also so relieved.

I have always loved the idea of college. My childhood best friend and I were nerdy little birds who used our free time outside of school to play “school.” I routinely asked teachers if I could stay in school over summer break. I lost my tiny mind when I learned there was such a thing as boarding school where you actually got to live at school. My brain exploded when I learned about college. I always knew it was going to be special and wonderful and I would love it.

I worked really hard in high school. I went to one of those super-college-prep Catholic schools and was in the top tier academically of my class. I took over extracurricular activities with the precision of a Roman general, and racked up an uber impressive resume. College, I’m so close to you.

Unfortunately, I was also racking up an uber impressive medical record and high number of events of unconsciousness. Health breakdown, I’m even closer to you.

I got in everywhere I applied, and I got in Early. That means I had filled out my applications over summer vacation and knew where I was going before my friends had sent away their first Common App. I got the sweatshirt. I lived in the sweatshirt. The sweatshirt was falling apart by Thanksgiving break.

I still have my acceptance letters. 2007 was pretty much the last year they sent them, and boy do I feel bad for those of you who get them in email form now because, wow, my acceptance to George Washington University was the prettiest piece of mail I ever received. You know in the movie Bridesmaids when Kristin Wiig opens the wedding shower invitation and butterflies fly out and it sings music? GWU acceptance letters were like that, albeit with no live animals.

I thought I could want College into existence for myself. I thought I could ignore Chronic-ness into extinction.

I am not being melodramatic when I say that the level of devastation I felt when I didn’t get to go- when I absolutely could not go, was the most epic emotion I have ever felt. I cried so much and for so long, I felt like my guts had been scooped out.

It didn’t seem fair, and really it just wasn’t, that my college dreams weren’t going to come true the way I planned and worked so hard for.

I was supposed to take a year off and be sick. But I wouldn’t let myself. I went to the local community college and signed up for this new thing they were trying, teaching classes online. They wouldn’t tell anyone they were online and they would be transferrable.

I continued to be sick, and I continued to go to school. (Full disclosure/Truth time: I would have absolutely still been sick even if I had not gone to school. Continuing to go did not keep the sick from going away.)

I transferred to the University of Maryland to go to school in person.

I transferred back to the community college online classes.

I finished my Associate’s Degree online.

I transferred to Franklin and Marshall College in Lancaster, and was all set to go and move in when they told me they weren’t going to count a single class I’d taken- 60 credits gone. I tried to go anyway. I didn’t make it past move-in day.

I transferred back to the University of Maryland.

I went, I had to stop, I went, I had to stop.

Finally, I just stopped.

My college dream felt broken. It felt far away and so unlike itself. I had changed my major approximately 6 times, even though I had always planned on being one thing. I was supposed to be a broadcast journalist. I was also supposed to be Maryland’s Junior Miss, then America’s Junior Miss. You know, so I could just be Diane Sawyer. (I literally took part in the Junior Miss pageant my senior year of high school for this exact reason. I came in 5th…out of 6 girls, because they really should have spent more time teaching us the dance routine and I really shouldn’t have audibly said, “Oh shit!” when I messed up halfway through. #TRUESTORY)

   

I was not Diane Sawyer.

Instead, I felt like someone Diane Sawyer would do a Special Report on. Here, we have the sad, sick, Chronic, who is stuck in a spinning hamster wheel going no where.

I took time off, became a Medical Transcriptionist. I worked for a little bit. I wanted it to be good for me.

But College kept looking for me, and I kept looking for it.

I finally decided to look into schools that would let me finish totally online. In person was not going to happen.

I found Arizona State University.

I figured we were meant for each other because their mascot is the Sun Devil and I also agree that the Sun is the Devil.

They took all my credits. They let me do everything entirely online.

And so it is that I became a Mass Communications and Media Studies graduate of the Walter Cronkite School of Journalism, which was a bit of karmic wish fulfillment because if not Diane Sawyer, ol’ Walt will do just fine.

You know, in a pinch.

It wasn’t what I planned. It wasn’t what I hoped for. But strangely, after 10 years, if you squint real hard at it, it was pretty close to what I wanted.

I’m exhausted, but I think I just might be kind of happy.

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Iron Woman

As a firm supporter of #TeamCap, it was awkward to learn recently that I am literally Ironman. Let me explain…

Almost 2 years ago at a routine physical, my doctor at the time told me I had elevated serum ferritin, a measure of iron levels. Don’t be alarmed she said, we’ll keep an eye on it. It requires little to no attention. No biggie.

AH-HAHA, my insides laugh at “No biggie”s.

Earlier this year, I started getting so tired I could barely stand it. I went to the doctor, and everything came back normal. Frustrated, I went home and scoured my medical records. Could we by chance check this serum ferritin thing that was high? Even though it’s not a routine test and I have no idea why the doctor ran it the first time?

Oh what’s that? My level that was high is now DOUBLE?

Let’s watch it and see what it does, they said again.

The next month it was higher, the month after that, higher still. All of a sudden, this random test result was climbing the charts.

Turns out there’s a genetic mutation, of which I have a copy, that can lead to a condition called hereditary hemochromatosis, which you can read about here. There are multiple genes involved and luckily I only have one copy of one gene, so my case is no where near as severe as it could be.

The short version of hemochromatosis is that if the mutation is active (you can have the mutation but not the active disease, genetics are weird), your body stores iron. While everyone needs a normal amount of iron to keep their red blood cells happy and prevent anemia, having too much iron more or less poisons the body, creating an environment of toxicity. The iron gets stored in the organs, though where it goes nobody knows.

Serum ferritin, that weird little no biggie test result, shows the level of iron stored in the body. My high level meant that I was in overload mode, and for some reason it was suddenly and quickly approaching toxicity-land. Hence my extreme exhaustion.

The best (and really only) treatment for this condition is to donate blood. The higher your overload, the more often you donate, and you donate kinda forever in order to keep your iron levels in check.

Now the question becomes Can a POTSie donate blood?

Technically yes. I am not anemic. I passed all other qualifying questions the Red Cross asks to ensure your safety and the safety of your blood.

Should a POTSie donate blood?

I absolutely DO NOT recommend it.

I was so flipping nervous the whole time. I drank so much water because you’re supposed to be hydrated. Then I peed 95 times because a) I was super hydrated and b) I was afraid of peeing my pants if I passed out while they took my blood.

I actually felt so much better for a few hours after I donated, because technically, I had just removed a large portion of poison from my body (iron overload is only bad for people with these mutations- people getting blood transfusions actually need the iron, so the excess makes for a super duper replacement, if you’re concerned). But then, all hells broke loose. I was still one month from my 3-year No-Faint-iversary and I really thought I wasn’t going to make it. My blood pressure dropped so low so fast, and I, too, dropped so low so fast. I remained conscious, but barely.

Yikes.

Further investigation revealed that a medication I have been taking for 7 years was potentially contributing to my iron overload, so I had to go off it. Which SUCKED, as any medication withdrawal does. Additionally, I’ve given up my beloved spinach and have reduced my red meat intake. These are the only “lifestyle factors” that contribute, though stress can also. Still working on how to get rid of the stress…

My latest blood test shows a dramatic and drastic turn-around. So yay! But also ouch, because as anyone with a health condition knows, dramatic and drastic is uncomfortable both ways. Even though it means I’m getting better, my body has to take the time to catch up.

Unfortunately, I have to monitor this condition for the rest of forever, but luckily it isn’t the most invasive. Fingers crossed that as the overload lessens, my insides will be less overloaded with ick.

Also, fun story, the Red Cross sends you a thank you note when you donate blood, and a donator card that tells you your blood type. Guess what mine is?

I literally have B Positive running through my veins. Would you expect anything less?

Summer of ’17

It’s a cruel (it’s a cruel), cruel summer/Now it’s gone/ Leaving me here in August…

Any song anywhere can be adapted to fit one’s needs, don’t you think?

I’m not going to sugar coat things, Chronic friends, this summer has been hell.

Last we spoke, I was recovering from a freak allergic reaction, or at least that’s what we’re calling it because no one is actually sure.

That was just under 3 months ago. Since then:

-I was found to have a weird genetic mutation/condition, called hereditary hemochromatosis (which don’t you worry, will be getting its own blog post in a hot minute), which causes the body to retain iron to the point that it is overloaded and the iron then poisons your organs (yeah, wish I was kidding about this one; PS: If you are related to me and I didn’t send you a form letter in the mail, you aren’t on the side I inherited it from.)

-Underwent treatment for the weird above, which meant donating blood and going off a medication that I’ve been on for 7 years that was negatively contributing to my iron storage levels.

-My mouth and throat symptoms never went away after my allergic reaction, despite removing nearly everything from my diet and slowly reintroducing things back (Except berries. No more berries). Excessive amounts of steroids didn’t do anything but make me crazy and give me a thrush infection in my esophagus. My doctor refused to give me an antibiotic despite developing fevers and additional symptoms, so I got a new doctor, but not before I developed an infection so bad that the lymph node behind my ear solidified into a rock hard knuckle on the side of my head that could actually be seen when standing away from me. Still don’t have a clear chicken-egg trajectory on what exactly happened here.

-I’ve lost over 15 pounds from not being able to eat due to throat pain and reactivity and if one more person asks me why I’m upset about this I’m going to flipping lose it on them. I haven’t been able to exercise at all due to extreme weakness, people, and I have a lot of displaced Hulk-type rage that hasn’t had an outlet.

-My new doctor has decided to treat me for Lyme disease because I had a bullseye rash 10 years ago, was never treated for it (doctor at the time said it was “stress”) and all the weirdest of my weird has happened since then, so you know, plausible hypothesis.

Additionally, my family was devastated by my beautiful, dear, sweet, wonderful cousin’s sudden death at the end of June.

I only have 4-letter words for this summer, and this summer knows it.

Update: I started writing this post last week, but was interrupted by MY KITCHEN CEILING CAVING IN. Seriously. There was a leak in the upstairs bathroom, and now my kitchen looks like this:

So you know, sorry I haven’t been keeping up-to-date with this here blog-er-ooney. My insides and my outsides are literally falling apart.

 

Crisis: Recovery

Ok, so being one big ball of ALLERGIC is really fraying to one’s nerves.

Obviously.

ANAPHYLAXIS DAY 2017

I am not a fan of hospital selfies.

Really, I kind of just shared that one to make you laugh. (Go ahead, it’s ok!)

I look SUPREMELY pathetic.

What’s funny is, I asked my mom to take my picture  in order to send it to my sister so that she would know that I was ok post-Epi-pen. I was insistent that sending my sister a picture of my smiling face would be reassuring.

AHAHAHAHAHA.

Are you reassured by that picture?

Yeah, neither was she.

But don’t worry, I laughed when I first saw it too. So much so, I had a huge coughing fit and attracted nurse attention.

Lesson learned: There is nothing reassuring about a post-Epi hospital selfie.

Moving on.

Or at least trying to…

I have been trying so, so hard to move on from being a reactive mess. It has been nearly 2 whole weeks. I feel like everything should be totes norms again or whatevs the kids are saying these days.

Except, I keep reacting to stuff.

Nothing like Monday, I’ll be clear about that. No Epi has been involved; however large quantities of antihistamines and steroids have been.

Quick backstory: I have Mast Cell Activation Disorder (MCAD), which I just realized is not in my explanatory “What’s POTS” page, so as soon as I’m done here, I will go update that. Whoopsie. There’s a lot to explain and keep up with. Sorry. Anyway.

Everyone has mast cells. There are a part of your immune system. When you have an allergic reaction, your mast cells multiply very quickly, like a huge army assembling to attack the invader. If you have MCAD, your mast cells get “activated” for a whole lot more than they should. Personally, if I am in a reactive/symptomatic phase, even if you hug me too tight or too long, my skin will get hot, red and itchy because the pressure is enough to trigger my overzealous immuno-army. The doctor who diagnosed me loved that I was such a perfect “teaching case” because he could run his pencil eraser down my arm, have a red line of tiny hives immediately pop up and remain, and then show off how mast cells work to his colleagues, medical assistants, nurses, receptionist, and whoever else was in a 10-foot radius.

Um, you’re welcome?

In addition to ducking out from weird huggers (they are out there, and I’m sorry, I like you as a person, promise- you just hug weird!), I also avoid trying on clothes (shopping is literally painful), wearing clothes that are too tight (compression stockings nonwithstanding), and brushing up against anything lightly (which is a strange sensation that produces AGONY).

The point of sharing all of this is to say that I am incredibly used to being allergic and allergic-type sensitive and reactive in its many, many forms.

I’ve just never had quite such a time with food before.

Usually all my food related problems are questions of digestion. I haven’t really been able to get that far lately though.

Clearly, when I had my severe reaction to whatever (still haven’t eaten strawberries, eggs, or oats since that morning. Also no fertilizer…I think…?), it woke up the Mast Cell Army that lives in my mouth.

In the past 2 weeks, I have had weird mouth reactions to:

Food that is cold.

Food that is hot.

Food that was fine to eat this morning, but not this afternoon.

Anything eaten when I’m tired.

So, you know, like a bunch of reactions that make total logical sense that I can then show as evidence to a medical professional who will look at it, see a pattern, and say, “Oh, no worries, you have a really straightforward case of _____.”

As per usual.

These “weird reactions” have included, but not been limited to: coughing, red burning dots on the sides of my tongue, redness around my mouth, and a feeling of fullness. Thankfully, I’ve always been able to swallow, and have had no choking.

It’s gotten so much better now that my prednisone taper is done and I’ve had a steady stream of antihistamines pumped into me.

But still.

Recovery is a journey, not a destination.

Apparently, I’m on the scenic route.

Crisis: Acute

I fell out of my chair on Monday.

I also stopped breathing.

I know, way to bury the lead, Nic.

I still don’t *really* know what happened.

Everything started out fine. I was late getting up, having been an Outlet Mall Shopping Machine on Sunday for Mother’s Day. I figured I was just feeling sluggish from over exertion and needed to just get going.

I got up. I did Zumba (my favorite exercise thing right now because running is just…sigh…not happening). I took a shower. I did dishes.

I sat down and ate breakfast.

I eat the same thing every day, with little to no variation. I’m boring like that.

I ate my eggs, I ate my boring plain Cheerios, I ate my strawberries.

On the very last bite, I couldn’t swallow. My face felt itchy and hot. I coughed a lot. I went to the bathroom a few steps away and my face was blotchy. As someone with Mast Cell issues, I am used to this sort of sudden yuck. I went to the kitchen to grab my Claritin. I usually take it, call my mom to say, “Hi, breathing hurts, thought someone should know,” and then in a half hour, I’m all better.

Except, I could barely get to the kitchen. It hurt so much to breathe and I could not swallow. I grabbed the Claritin and pressed my mom’s speed-dial. I went back to the dining room to sit down. By the time she answered all of 10 seconds later, I was shaking severely and had fallen out of my chair.

Very luckily, she was down the street, and came right over. I couldn’t stop shaking and my breathing wasn’t getting any better despite having choked down the Claritin in desperation. Mom called 911 and I faded in and out of coherence on the couch.

When the rescue squad people showed up, they shot me up with some Epi, which initially made me feel like I was going to die. I don’t know if anyone has had Epi before and if you thought it was a pleasant experience, but really. I was at the point where everything had gone kind of numb and then I felt like my whole body was on fire and my heart might explode.

But then I could breathe again.

Kind of.

For some reason, the universe sent me the most spatially challenged rescue squad on the face of the earth. Despite no obstructions or any sort of obvious reason, they decided that they couldn’t get the stretcher in my house. They said I’d have to get to it.

Ok, I thought in my barely coherent brain, which one of these 5, yes, 5 able bodied men is going to pick my skinny, shaky butt up and carry me outside to that stretcher?

That would be none of them.

Still shaking violently, they dragged me by my armpits out my front door.

Super suave, I know.

I think we need a picture of a tiny adorable animal to bring our boiling blood pressures back to normal. Or at least I do.

They strapped me to the stretcher, loaded me in the ambulance and my mom assured me she would meet me at the hospital, all while shoving my allergy/medication list into the hand of the not super-helpful rescue responder.

My ambulance ride went like this:

“Sweetheart, you have got to calm down. You are shaking so bad right now, it’s probably an anxiety attack. You need to take deep breaths. It will relax you. Hey man, [talking to the driver] what did you do this weekend?”

Mmmhhmmm.

Super suave.

He put in an IV, but it was a crap line, and they had to redo it the second I got to the emergency room, where, thankfully, people were a little more concerned about my not actually being ABLE to take a deep breath and no one said the word “anxiety attack” again.

Turns out that the shaking was because my potassium level had suddenly and severely depleted to a <whatever level is just above “dangerous”> level, and I needed immediate replenishment.

Because I had been eating when I keeled over, and had been eating strawberries specifically, a known high-allergen food, and because the Epi had helped me breathe again, it was accepted that I had an allergic reaction.

However, I’m not super convinced I’m allergic to strawberries because 1) they are my favorite food and flavor and I eat them 99 times a day every day, 2) I had some the night before and was fine, and 3) had eaten a whole plate of them without issue before I just couldn’t swallow the last one.

It has been suggested to me by many that there could have been something on the strawberry, such as errant fertilizer, which could have caused a reaction. This seems very plausible.

In the meantime, I spent the day at the hospital, being pumped full of potassium, steroids and anti-histamines. I was better enough to go home and not be admitted, which was good, but I was not “better” by any means, which sucked.

As the week went on, I continued to be highly reactive to things, with mild difficulty breathing, like aftershocks of an earthquake.

At the end of the week, my face filled with fluid (a result of all that inflammation) and I am now on a strict schedule of steam and medications to drain my sinuses and ears so that they don’t get infected.

I feel incredibly beaten up.

If I’m honest, I’ve been building up to a bodily meltdown over the past few months. I had an ominous feeling that something was coming, as I had been more prone to extreme fatigue and random hives lately. But I could not foresee how quickly I would enter Crisis Mode.

I have to shift to healing mode now, because it’s too easy to freak out that everything is an invader intent to harm me. I’ve added a bunch of stuff to my “sensitive-to” list and I am being a stickler for avoiding high allergen things (like all berries and eggs, for instance) for a little while until my insides have some time to recalibrate.

I’m again reminded how crazy ingredient lists are. Like, there is berry oil in my chapstick and egg whites in my chocolate bar. But I’ll make it work.

I always do.

 

 

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…

 

The Chronic Girl’s Guide to Ombre Hair

Step 1: Have your very dark hair highlighted blonde. Accidentally make it vaguely neon because the only thing the girl at the beauty supply shop said when you asked, “Will this make me blonder?” was “Kind of. Sure.” When you return to the store, this ever helpful salesgirl will be happy to sell you toner to fix it, which she conveniently forgot to mention at the outset.

*Nic Note: As I am the spoiled rotten hair-brat of a retired licensed hair professional, I got to do this part at home. You may not get to- highlighting on your own is tricky and not recommended!

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Pre-Toner

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#Better

Step 2: Do absolutely nothing to it for 6+ months as um, you are a Chronic, and Chronic things are happening, like you are up to your earlobes in Chronic yuck and have to go off your Chronic meds and all of a sudden it’s the New Year and you haven’t looked in a mirror since 2016.

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Nice to know how fast my hair grows…

Step 3: Congratulations! Those aren’t 6 inches of neglected roots, but rather carefully crafted ombre skill. You meant to do that. Absolutely. You’re on fleek. Or something. But both your hair and your pop-culture slang are totally up to date and relevant.

Kind of. Sure.

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Too Pretty

Big News from the Victoria Secret Fashion Show-

The Fantasy Bra this year cost a reported $3 million and was approximately 450 carats of diamonds.

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Crazy, right?

Oh and P.S. three of the top models walking in the show have confirmed chronic medical conditions.

Which brings us to my least favorite compliment/not-compliment, which has been uttered to many a Chronic lady, in the guise of making her feel better about herself while really just making her want to punch someone in the face:

You’re too pretty to be sick.

Um, well I am sick, so um thanks? I guess? Maybe? What?

Like really. I get that we all have an idea in our heads that Chronic people look like this:

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But that’s not really how it goes, and now we have Victoria Secret models who are showing the world that Chronic looks like this too:

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Let’s meet these Chronic ladies, shall we?

Bella Hadid

Yes—or should I say Yaaas—girl got to walk past her ex-boyfriend on stage while looking like this:

bella-hadid-victorias-secret-angel

But, hey, side note, Bella Hadid has Lyme disease. According to an interview she did with US Magazine, her worst symptoms are pain, brain fog, and extreme fatigue. This is a young woman who shows up to work (werk) and gets it done. Then she goes home and sleeps for 14 hours, gets up, takes a nap, gets up again, and then sleeps some more. Sound familiar, Chronic friends? We call that Tuesday here in Chronicville. Maybe with a little less werk, though, and a little more work…

GiGi Hadid

Mandatory Credit: Photo by Matt Baron/BEI/Shutterstock (7529865qx) Gigi Hadid on the catwalk Victoria's Secret Fashion Show, Runway, Grand Palais, Paris, France - 30 Nov 2016

Bella’s big sis has always been vocal in her support of her sister (and mom and brother) who have Lyme disease, though she herself does not have it. Right after the Victoria Secret Fashion show this year, though, many speculated that the “girl-next-door” model had lost too much weight in preparation, which led Hadid to make public her struggle with Hashimoto’s, a thyroid disease. Hashimoto’s caused her to have a sluggish thyroid (causing headaches, weight gain, and tiredness), and the medication that she was taking to normalize it wasn’t quite right and caused her thyroid function to sway to the other extreme. Her medically-induced fluctuating metabolism was the real cause for her change in appearance. Medication adjustments causing just as many problems as they solve? Stars, they are just like us!

Kendall Jenner

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Sleep paralysis is more of a phenomenon than a disease, but it is a condition that is chronic in nature and causes a person to not be able to move or speak while they transition in or out of a sleeping state. As chronicled in an episode of Keeping Up With the Kardashians, Kendall has had to figure out how to balance her frequent paralysis episodes and mounting anxiety over her condition with her desire to remain a top model. Work/life/Chronic balance got you down? Kendall knows what’s up. And it’s not her…or me (hemiplegic migraines cause temporary paralysis so I GET YOU, GIRL).

Here’s the thing, Chronic friends. The whole world agrees that these ladies are pretty. It is also documented by medical professionals that each one of them has a chronic condition that is seriously impacting her life. Ergo, “You’re too pretty to be sick,” is just about the dumbest sentence ever. Chronic don’t care what your face looks like, honey. But that central nervous/endocrine/neurological system? Damn girl. That’s what Chronic’s lookin’ at and it unfortunately likes what it sees.

Better compliment?

“I’m sorry you have to deal with such crummy Chronic circumstances…

…By the way, you look really pretty today.

Lather. Rinse. Repeat.

Inside Out

Alternate post title: Going Off Your Chronic Meds, The Disney/Pixar Version.

You guys. I went to sleep at the end of August and now it is December.

I know I was awake for at least one day in October, because I dressed up in a pretty amazing Chewbacca footie-pajama-style costume to hand out candy on Halloween.

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But the rest of it?

Evaporated into Chronic air, as time tends to do for me.

Often.

The catalyst this time seemed to be my Chronic medications. I was taking something for pain/to help me sleep, but for no apparent reason I started only being able to sleep during the day and was wide awake at night. I tried tweaking that, but it only got worse, so okay, that means it has to go. Turns out that med was severely impacting my blood pressure in a negative way, and when I cut it out, my blood pressure sky-rocketed, egged on by meds taken to raise it anyway. So then I had to fix those…but again, there was no right fix. Which means they had to go.

Yep, you read that right.

Bye-bye artificially induced wellness.

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It’s time to see if there’s any real wellness built up under there.

In the 7 years that I have been a diagnosed and symptom-managed Chronic (as there is no cure for, well, anything), I have never been off medication. I have gone up, rarely gone down, but have never been able to get off altogether. When I did have to go off one medication in 2012, the reaction was so severe I had a hypoxic (lack-of-oxygen) induced seizure. So, you know, this is not on my list of things I’m excited to do.

But it had to be done.

Now, for your reading pleasure, a dramatic re-enactment of what it feels like to go off your medication (in a doctor supervised, very slow and safe way) for your Chronic illnesses, with the help of the Disney Pixar classic Inside Out:

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Ohmygoodness YES! THIS! This is what I have been waiting for! My body has given the signal- it does not want this crap in my bloodstream any more. This is a good sign! This means I’m better…right?

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Ohmygoodness NO! WHY? What does this meannnnnn? Am I better enough? Can I handle this? I turned blue last time. BLUE. I mean, I look great in blue, but not in my skin! Why do these things always have to happen to me…

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Yeah? WHY? Why do these things always have to happen to me? What did I ever do? Huh? This is CRAP. I mean SERIOUSLY. Who is in charge here? Why didn’t the doctors warn me when I went on this stuff that it would be so hard to come off? Why the flip did they figure I’d be on it forever so it wouldn’t matter? Jeez! I mean COME ON. This is so unfair…

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I mean, TOTALLY. Totally unfair. Like, is the universe just ignoring the fact that I am awesome and do everything right? I run, for Pete’s sake. I eat boring food that’s healthy and avoid sugar like the plague. Ugh. Really. Like, this is so not cool. Shouldn’t I get a break?

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I’d really like a break. This is really hard. It’s lonely. There’s no way to make it better. It just has to happen. You can’t help me. I can’t help me. I don’t know if this withdrawal is ever going to end…

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Now it’s December and I once again know what day it is. The transition is not over completely, but it’s better. I didn’t turn blue (save for that run-in with sadness). I’m okay(ish). I’m going to be okay. (I think. I hope.)

This is, of course, the abbreviated version. It’s been a roller coaster, and I hate roller coasters. I have a tendency to hide under the covers at their mere mention. And, like I said, it’s not over. You don’t get used to not having something in your system in a few weeks when it’s been in there for 7 years. This stuff worked because they each did something I really needed for a time: One depressed the pain signals to my brain and the other stimulated the nerves in my blood vessels. Blood vessels are everywhere in your body. Nothing’s telling them what to do anymore. Nothing’s telling my overactive pain firings to chill pickle or cut it out. Let’s take a moment to think about that for a second…

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Wait, no let’s not.

Most people experience a “new normal” every few years when a big life event happens. As a Chronic, I get a “new normal” multiple times a year. I’m practically a new normal pro now, but this feels like a much bigger new normal. It feels right though, and after having felt so wrong for so much of this year, I’m glad that maybe now some things will start to change for the better.

I’ve missed you, Chronic friends! Let me know what you’ve been up to in the Comments here or on my facebook page: http://www.facebook.com/iamchronicallywell

 

Something Fishy

Let me start out by saying I’m allergic to fish and shellfish, therefore I have no awkward carnivore dilemma when it comes to my incredible, bottomless ocean love of all things fishy. #FishAreFriends #NotFood

When I was a kiddo, all I wanted was to be a dolphin trainer.

The National Aquarium, inconveniently located in Baltimore, Maryland, not anywhere near anything else National-y named, was my favorite place on Earth because of one special reason.

A baby bottlenose dolphin named Chesapeake.

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Chesapeake was the first dolphin born at the aquarium, and in 1992, that was a big deal. I was 3, and I promptly adopted her as mine.

Every chance I got, I was planted in the National Aquarium’s auditorium for the dolphin show. Back in the 90s, it was an actual show- the dolphins did tricks, the penultimate being a mind-blowing leap by one to touch its nose to a bright red ball hanging from the ceiling. A very, very high ceiling. It was magnificent. I would go home and spend all night reenacting the show with my own stuffed dolphin pod.

Of course, now we know that captivity is not the best option for our dolphin friends, and the National Aquarium is working on relocating my dolphin, I mean, Chesapeake (and company), to a sanctuary in Florida. I am devastated, but you know, trying to be happy for her.

Dolphins or no dolphins, a trip to the aquarium remains my quickest route to Zen.

Maybe it’s a Pisces thing.

I have an aquarium bucket list. So far I’ve been to 2 out of 3 Ripley’s Aquariums (Gaitlinberg and Myrtle Beach. I’m coming for you, Toronto). Someday, I will shell out and have a sleepover party in one of their famous tunnels. I have seen the mermaid show at Weeki Wachee Springs, Florida, and was overcome with awe and jealousy. I’ve had deep telepathic conversations with some seriously mellow manatees, also in Florida. The #1 thing on my list is to swim with beluga whales. I’m pretty sure my mind will explode when I do so.

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I want to hug one so bad #BabyBeluga

Whenever I have something really unfortunate happen Chronic-wise, I have a habit of getting myself a present to cheer myself up. I didn’t even realize it, but quite a number of these cheer-up presents have been fish/aquarium/ocean related. For instance, when Johns Hopkins wasted an entire day of my life making me wait umpteen hours to see a “specialist” whose great and powerful Oz contribution to my life was to say, “Has anyone ever told you that you should be drinking more Gatorade? Because if you still don’t feel well, you should just drink more.” I came home with this guy, acquired from the gift shop. His funny fishy face made me forget the jerk upstairs.

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Last week, a tendon cyst from hell interrupted my life, and my initial reaction was to self-soothe with some crafting and fishy fabric. I also got to use up all the JoAnn Fabrics coupons I have been hoarding. #Score

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Please do not get me started on my love of Finding Nemo et. al. I will only say that Finding Dory was everything I could ever ask for in an animated movie, and that Pixar created what I never knew I needed in real life until I saw it on-screen: A fish rehabilitation hospital narrated by the one, the only, Sigourney Weaver.

True confession: Soda came out of my nose at that part as I was not expecting it and was totally thrilled and laughing so hard, and had, coincidentally, just taken a giant gulp of my Coca-Cola. Also, I don’t think it’s a spoiler to tell you that Sigourney is the friendly voice who welcomes you to fish rehab. If it is, sorry. But really, is it? #NothingSigourneyCantDo

For my birthday this year, my sister got me a fish. Her name is Ruby, and her hobbies include jumping through hoops I make with pipe cleaners and going to sleep every night in her castle. I am not lying. I say “Goodnight Ruby-rubes,” and she swims right into it and I turn out the light on her tank. #Melting

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Fish literally go with the flow (Unless they are salmon. Why you gotta show off, upstream swimmers? You are just going to get eaten by a grizzly bear. #CircleofLife), something I continually aspire to. Maybe that’s why I find them so soothing? Maybe Dory really is the wisest of us all when she sings, “Just keep swimming, just keep swimming.”

What’s your happy/Zen place, Chronic readers?