That time I let Sigourney Weaver tell me what to do…

I like make-up.

And dressing up.

And doing my nails. Often.

Also, GLITTER, in very small, very contained quantities (which is an oxymoron as anyone who has ever come in contact with glitter knows that it cannot be contained). Really, just glitter nail polish.

In my head, I look like:

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Dita von Teese

Some days, I wish I were brave enough to be a late 90’s Gwen Stefani:

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Someday, I will have pink hair…

For a long while when I was really not well, things like makeup and nails and getting dressed up made me sad because it felt So. Freaking. Hard.

This is my “symptomatic” uniform:

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Funny how laying it out on my bed makes it look like a chalk outline at a crime scene. That’s about how good I felt when I wore it. And I wore it for at least one year solid (2008, you were kind of a drag). I changed my shirt every day, don’t get me wrong, I wasn’t unhygienic. I even washed the sweatsuit itself every weekend when I would simply stay in my pj’s all day. But that’s it, that’s what I wore. At the time, I was in so much pain that even clothes hurt. Drawstring waistbands and cotton are easier on ouchy bodies.

The way I ended up with this particular uniform is kind of a funny story. It’s also embarrassing for me, but whatever, I think I’ve gotten over embarrassing myself on the Internet when I took selfies of my compression stocking-d legs a few weeks ago (see In which I try to make compression stockings “Happen”, June ).

I love Sigourney Weaver. I think she is awesome and kickass and there is just something about her togetherness that I find highly enviable. I would rather be her than Melanie Griffith in Working Girl. I’m sure that says something about me, but I don’t care to comment on that right now.

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ANYWAY.

Sigourney was on the Oprah Winfrey show at some point waaaaay back when Oprah still had a talk show on ABC and I was lying around on the couch, miserable and pretty depressed, as I was still undiagnosed. At some point in the interview, Oprah commented on Sigourney’s clothing and how she always looked so put together. Sigourney then said something that I wish I could go back and keep my silly, silly, teenaged self from hearing:

“I don’t own sweat-clothing. If one owns sweat-clothing, then one wears sweat-clothing.”

OhMyGosh, she is So Right, 18 year old me thought. I am a frumpy-frumperson (there I go making up words again) because I allow myself to be. If I just get up and get dressed nicely every day, I will simply stop being miserable and depressed and I will feel better and then all will be well in my world.

And so I donated nearly every item of clothing in my closet.

Pretty much everything I owned.

No more sweatpants or t-shirts. Bye-bye pj bottoms and hoodies. Yoga pants hadn’t been invented yet, but they also would have been given the boot.

I still regret this, as I had amassed a pretty significant T-Shirt collection, which at the very least would have made an awesome quilt, had I had the foresight to think of it at the time. Brain-washed by Sigourney’s declaration, and, let’s face it, significantly impaired by a POTSie lack of oxygen to my brain, I was determined.

I would get up. I would get dressed. I would stop all this melodrama of being sickly.

Want to know how long that lasted?

About an hour. Willing myself to be well wasn’t going to fix anything. So then I cried and cried and cried because by that time strangers at Value Village were picking through heaps of all my favorite clothes.

Lesson learned: Celebrities give crap advice. See also Kate Moss’s famous declaration that “Nothing tastes as good as skinny feels.” Clearly that chick has never eaten, well, anything…

I had to go get something to wear that wouldn’t cause my skin to rash and was also comfortable enough to wear over my achy, breaky limbs. The sweatsuit and I met on one un-enchanted evening in an Old Navy (it was the only one that wasn’t velour, thanks a lot Juicy Couture for popularizing the most weird feeling fabric in the whole world), and the rest is history. It was even on clearance.

I became what Sigourney and I both didn’t want to be; not just a person who wears sweat-clothing, but one who wears discount sweat clothing. I could envision her turning up her perfect nose at me. (I’m sure she is a very nice person…Hey Sigourney! I’m a big fan!…if you happen to be reading this…)

Post-diagnosis, I was able to slowly make my way to where I wanted to be, appearance-wise. I started with pants that had buttons. Until your finger joints have swollen and your skin has freak-out rashes over NOTHING, you will never know just how happy I was to get to a place where pants with buttons was An Accomplishment.

Now, things are different, dare I say better, and sometimes I even wear shirts with buttons at the same time I wear pants with buttons.

And yes, I wear makeup now:

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#nomakeup

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#makeup

And paint my nails:

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In some twisted way, Sigourney was a teensy bit right. I do feel better when I put some effort into my appearance. It’s easier to feel sick when you look sick, and sometimes it’s easier to forget it for 5 minutes if you don’t.

Mostly, now I just think of it as fun. It’s fun to get new makeup (it’s so pretty! I’m a sucker for good packaging). It’s fun to watch youtube videos in a vain attempt to actually use said new makeup correctly. It’s fun to choose what I’m going to wear today without my splotchy, itchy skin being the first thing I consider (though it is the second thing…progress is progress).

Also, I am supremely grateful for whoever invented yoga pants, and whoever is responsible for bringing back leggings. They make my life comfier, plus I look on trend because what 20-something girl, Chronic or not, isn’t wearing leggings right now, pretending they are Real Pants? I mean come on, they have jeggings now.

Everyone wants comfy pants. I’m sure even Sigourney would agree…

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Or maybe not?

 

*Nic Note: I desperately tried to find a picture of Sigourney Weaver wearing sweats. Apparently she is Serious about this, as not a single one exists.

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Friends

I’ll be there for you/When the rain starts to pour/I’ll be there for you/Like I’ve been there before/I’ll be there for you/’Cause you’re there for me too –The Remembrants, aka the theme song from Friends

I’m going to go out on a limb here and say that this is one of the biggest issues that Chronics are concerned about. You know, right after all that medical stuff.

Seriously though.

Having a chronic illness changes so many things about your life, and your social life is no exception. You may have been the life of the party. Maybe you were really dependable, the friend everyone knew they could go to for advice. Whether you had 2 friends or 20, you had a social life before your chronic illness morphed it into something unrecognizable.

Or, alternatively, maybe you’ve been Chronic for so long, you never had a real chance to be social. The friends you shared crayons with in 1st grade thought you switched schools because you spent so much time at home or in the hospital. You knew more about your nurses and their interests than those of your age-appropriate peers.

Either way, you know that having friends is important, you feel like you want to be social, but you may also feel like you just don’t know how to anymore.

I am all over this. By coincidence or necessity, I have spent a lot of time NOT thinking about my social life. As fellow Chronics can attest, I have had More Important Things to focus on.

Like figuring out how to remain conscious. Important, we get it.

Now, though, I’m at a point in my Chronic journey where the heath stuff has reached a plateau. It’s not getting any worse <RightNow> but it’s also not getting any better <RightNow>. I know how my ChroNIC self works. Repeatedly, my doctors tell me to go off and think of other things (as though that were so easy), to get out there and be social.

Inadvertently, I have been doing just that this whole month of July. Two POTSie conferences and a backyard BBQ later, this is what I’ve learned: There are lots of different ways to have friends.

The first POTS conference I went to was a private event for the members of an online support group. The majority of us have talked to each other online before or at least have a passing familiarity with each others’ names. I have friends in this group that I talk to all year round and though mainly long distance, I would consider them “close” friends, as I’ve known them since I joined the group in 2009. Some people I only get to catch up with at this particular event each year, and that’s good too. Every year, there are “newbies” to meet who are at the conference for the first time. Meeting in person is wonderful, and can often be the difference between someone whose name I merely recognize to someone I’m now going to exchange birthday presents with every year (which I love to do!). Lesson learned: Online friends can become real life friends as long as you are smart and safe about it. (See Keeping up with the POTSies, July 7 for more about this event)

The second conference I went to was open to the public, and at around 400 people, was a much larger scale than my online support group family reunion the weekend before. I figured I was going for medical information, and that if I talked to anyone, it would be a passing recognition of “Hey, weren’t you in the session on sleep disorders?” I wasn’t sure I would make friends, but I did. Mid-conference dinner-dance parties have a way of making that happen. This was actually a pleasant surprise, because strangely, the longer I have been Chronic, the more I have begun to doubt my own ability to do “normal” things, like making new friends. I am told by other Chronics that it’s a common feeling. However, I’m calling Bull-crap on this feeling, because it’s NOT true. I don’t recall doing anything special or out of the ordinary that helped me make friends. I smiled, said “Is this seat taken?” sat down, introduced myself, engaged in conversation (LISTENING and talking-don’t forget the listening part!) and an hour later we were dancing (kind of, we are POTSies after all) and exchanging contact information. Friend=Made (x5-Hi, new friends!) Lesson learned: Friends can be made anytime, any place.

This past weekend, my family threw a small BBQ party. It wasn’t meant to be small, but apparently summer is the perfect time to go on vacation, so there you go, small gathering. But small is good! Because the people who showed up happen to be some of my favorites (not that I have favorites…), people that I have known longer than I have not known them. It was purely coincidental that the friends that were able to come all happened to be people that my sister and I met in elementary school. Which is kind of a long time to know people (15-20 years!). When I think of these friends this is what comes to mind:

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Also, this:

imagesAt one point, my sister and I calculated that we hadn’t seen R in nearly 8 years. Which totally blew our minds because it felt like we had just hung out yesterday. It actually seemed to be that way with quite a few people- I may not have seen them in <InsertRidiculouslyLongPeriodOfTime> or there may have been gaps when someone went away to college (them) or couldn’t get out of bed for a month (me), but it didn’t feel like it. It just felt comfortable. And fun. Lesson Learned: You don’t have to see someone all the time to stay friends with them. You can re-ignite a friendship at anytime.

Ok, Ok, this is all well and good, I can hear you saying to me, Chronic Reader, but what about when you get dumped?

Ew. Yes. The friend dump. Made all the worse by the fact that they are dumping you for some reason related to your chronic illness.

I have had this happen. It is AWFUL and HEARTBREAKING and lots of other negative things ALSO IN CAPS.

I went to a very small all-girls high school, and my group of friends consisted of about 10 girls, though I tried to be friendly with everyone (necessary when your senior class is less than 70 people). I wasn’t diagnosed in high school but I was symptomatic and tried to hide it because I didn’t understand it and just thought I was going crazy (See I’m not having a panic attack, I have a heart condition! July 25). I thought that I had good relationships with my friends, though, in spite of this.

However, when I had to stop going to school the second semester of my senior year because I was so, so sick, no one called to find out why I never came back.

Really. No one.

I got invited to one graduation party, and I had a graduation party of my own that a few of them came to, but that was it.

It hurt. That’s all there is to it.

I tried to be in touch with one or two of them through the beginning of our college years, but with them away and me so sick, it just fizzled out. I let it, just as much as they did.

I was, however, very forcefully dumped by one friend who point blank told me I was “batshit crazy”, which unfortunately has nothing to do with Batman (love Batman? See July 23).

When you get dumped, it feels like its all your fault. You think, if only I had been better, had been able to be present for all those friend-things (senior year parties or even just going to the movies), if I just hadn’t been Chronic, that it never would have happened and everything would be FINE right now.

Here’s a secret, Chronic reader: It probably would have happened sooner or later.

Hold on, don’t recoil from your computer screen in rage, let me explain.

People who would dump you because of something you can’t control are NOT good friends to have. Period. Even if you were perfectly healthy, somewhere in the course of your friendship, something would come up, as it does for everyone, that is Hard. That person who would dump you because you are Chronic would dump you for any Hard situation. Do you want a friend like that? I don’t.

I want friends like my friends A, A & V, who responded to my Chronic news with something along the lines of “I may not understand what you’re going through, but I will always be here for you!”

Those are the friends you invite to your BBQ parties year after year. (It’s important to also return the sentiment- I hope they know that the same goes for me…I will always be <AsHereAsICanBe> even if I may not understand.)

It might be time to re-evaluate your social life, Chronic reader. I’ve been there, done that, and am much happier for it. When you make room in your life for new friends, they will show up.

And all you’ll have to do is smile =)

 

*PS: Speaking of friends, I’d love to be yours! Like my page www.facebook.com/iamchronicallywell and let me know how you maintain friendships while being your Chronically Awesome self!

I’m not having a Panic Attack, I have a Heart Condition

Ok, maybe I’m having a panic attack.

No, no, it’s not. It’s just my chronic illness affecting my heart function.

Ok, ok, it’s a panic attack.

Just a teensy, eensy one though…

Everyone gets nervous sometimes.

Sometimes, this nervousness gets slightly out of hand.

Occasionally, this slightly out of hand nervousness comes on suddenly, seemingly out of nowhere, and strangles you, dragging you deep down into the dark blue depths of an ocean of fear and terror.

Not that I would know or anything.

I’ve got a medical condition.

I am not crazy.

Except that I am highly neurotic.

Just Sometimes.

Ok, Often.

It’s a struggle for me to accept any hint of anxiety, and I have Good Reason (which is just something people say when they are Rationalizing).

According to a POTS patient survey by Dysautonomia International, in a group of 700, a whopping 69% were diagnosed with an anxiety disorder before they were diagnosed with POTS. That same survey showed that the average “diagnostic delay” for POTSies is 5 years, 11 months. Coincidently, 59% reported that before they were correctly diagnosed with POTS, they had been told by one or more doctors that their symptoms were “all in your head.”

To a POTS patient, being told you are Anxious before you are told you are POTSie means that you will have to continue to wait to find out the truth behind your debilitating symptoms. To a POTS patient, being labeled “anxious” is the same as being Dismissed.

It took 6 years and 3 months before I was properly diagnosed with POTS. December 2002 (I was 13) to February 2009 (a week after my 20th birthday). That is a looooooong time, let me tell you.

What exactly was going on in the meantime?

<This is the short version> Well, my first cardiologist told me that I had a rare fainting disorder and that I was the only patient of his who had it (which to a 13 year old means, I am the ONLY ONE in the WHOLE WORLD who has this). His infinite wisdom was that pretzels and Gatorade would cure it (which helps, but does not cure). When my Costco sized jugs of salty snacks and electrolyte drinks didn’t make it go away, my doctors decided to attribute my ongoing symptoms not to afor mentioned rare fainting disorder, but to being in the midst of some sort of anxious meltdown.

Which eventually came true. Because “If you build it, he will come” applies to a lot more situations than just building a baseball diamond in your corn field so you can play catch with your dead father (Sorry for the random Field of Dreams reference. But it applies, doesn’t it?).

If you keep telling someone they are anxious, you will make them anxious.

The result: If you were friends with me from 8th grade to sophomore year of college, when I canceled plans with you (which was a “when” not an “if”), I probably told you it was because it was too anxiety provoking to go to the mall, when the reality was that my heart was beating near or above the 200bpm range (that’s HULK pulse, for those of you keeping track. See Avengers, Assemble, July 21) on a regular basis, I just didn’t know it. NO ONE wants to go to Forever 21 like that. Sorry, 5-12 years too late!

According to WebMd, everyone’s favorite source of medical info, the symptoms of a panic attack are:

~”Racing” heart

~Feeling faint or dizzy

~Feeling sweaty or having chills

~Chest pains

~Breathing difficulties

~Feeling of loss of control

According to DYNA, Inc. on their website, www.dynainc.org, the symptoms of POTS include (but are definitely not limited to, this is just a short list to make a point):

~Fast heart rate (tachycardia)

~Dizziness

~Excessive sweating

~Chest discomfort and palpitations

~Shortness of breath

~Anxiety

I don’t think it’s a stretch to add “feeling of loss of control” to that list.

So it can be really confusing, for doctors (though don’t think I’m cutting them any slack-I get real cranky when I think about/hear about/come in contact with dismissive medical professionals), and for patients.

When I finally (finally!) was diagnosed with POTS in 2009, I spent a blissful 2 months anxiety free. I was put on medication that drastically changed the amount of symptoms I experienced for the better, and the peace of mind of knowing was like a high that I thought would never end.

Except, honeymoons don’t last forever, whether you are newly wed or newly diagnosed.

Part of the problem is that I developed a nasty habit in those 6 years and 3 months of giving in to “What If” thinking. I am a horrible What If-er.

What if I faint?

What if I faint when______?

What if I don’t feel good, or I look weird, or I stop making sense, or I make a fool of myself?

What if people notice? What if they are mean to me or make fun of me?

What if? What if? What if?

Unfortunately there is not a medication that can make that go away.

There is, of course, therapy, which I highly recommend.

There is also writing about it on the Internet for all to see, which I also highly recommend.

Seriously, something about telling people I am anxious makes me feel less anxious.

I’m sure this is because part of the anxiety, whether there is a Chronic Illness component attached to it or not, is a fear of losing face. As in, I don’t want people to think I am nervous because then they will think I am less than.

I am NOT less than.

I am just anxious.

There, I said it.

I, Nic of the Sick (that would be my Medieval Times name), am anxious.

In fact, I am so routinely anxious that I have this on my bedroom ceiling, so I can stare up at it when I am awake in the wee small hours of the morning, thinking (not about sunshine and daisies, that’s for sure):

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I didn’t really like the Brave movie, but I loved its poster! I read this as “Relax and Be Brave”.

I worry, worry, worry, about things from the important (what am I going to do when I turn 26 and can’t be on my mom’s insurance any more?) to the mundane (I just know everyone is staring at me because they think I’m a weirdo for wearing compression stockings under my shorts in 100*F weather!).

I’m NOT crazy AND I happen to have a medical condition. (P.S. Whoever decided anxious people were crazy anyway? Not cool, society, not cool.)

My Aunt bought me this sign for Valentine’s Day because she thought it was cute, and it reminded her of me as I am <kindof> a cupcake fiend:

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While I don’t usually advocate the eating of one’s feelings, I do have to say I am feeling a bit nervous about actually posting this on the Internet and outing myself as a nervy-nerverson (I also like to make up words). However, I happen to have some cupcakes available, though they are *supposed* to be for a small get-together I’m having tomorrow (which I also happen to be anxious about).

Hmmm…

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Sorry if there are not, in fact, any cupcakes for dessert at my gathering tomorrow.

I needed them.

I definitely feel calmer now.

Ba na na na na na na na BATMAN!

Monday and Tuesday proved to be this blog’s most successful days in terms of readers. iamchronicallywell has now been read in 8 different countries! Hi, Hello, G’day, Olá, Salut, Guten-tag, Tere, to all of you! I’d love to hear from you, so please check out www.facebook.com/iamchronicallywell to be in touch!

Apparently Superheroes are a big hit.

You are in luck, as today happens to be…

Batman Day

Happy Birthday, Batman!

75 looks good on you, darling.

DC Comics declared it, and it is so.

I have to tell you up front that I probably know more about the Avengers and the X-Men of Marvel Comics than I do about Batman and his friends over at DC. If you promise not to hold this against me, I promise not to hold it against you that you would rather sit through Christopher Nolan’s deep and brooding Dark Knight trilogy than the Technicolor fluff of wonder that is Joss Whedon’s The Avengers.

MV5BMTMxNTMwODM0NF5BMl5BanBnXkFtZTcwODAyMTk2Mw@@._V1_SX640_SY720_ OR MV5BMTk2NTI1MTU4N15BMl5BanBnXkFtZTcwODg0OTY0Nw@@._V1_SX640_SY720_

Different strokes for different folks, you know?

(Though I really had no idea that the movie posters were so similar in color scheme and inclusion of building-on-fire until I posted them side by side…Maybe we aren’t so different after all, Nolan fans?)

ANYWAY.

Focus…BATMAN.

Bruce Wayne. Orphaned as a young boy when his parents are murdered, Bruce declares that he will dedicate his life to avenging (see, everybody likes Avengers) their deaths by fighting criminals as the masked crusader, Batman. Joined by his sidekick, Robin, he takes on such love-to-hate-them villains as The Joker, Two-Face, The Penguin, and my personal favorite, Catwoman. At some point, Batgirl gets involved, though I’m not really sure when. (Please feel free to flood my Facebook page www.facebook.com/iamchronicallywell with your Batgirl knowledge, I’d love to know.)

What does this all have to do with Chronic Illness?

On the surface, Bruce Wayne looks like he’s got it made. A millionaire (billionaire? Has he been adjusted for inflation yet?) playboy, he’s charming and suave. He has fancy parties and lots of lady friends. But when no one else is looking, he dons the Batsuit and gets to work, fighting off things that all those party-attendees only know from nightmares. For Batman, the danger and the intensity of the fight are real.

Sound familiar, Chronics?

On our outsides, a lot of us seem pretty put together. Usually you cannot identify a Chronic on the street by looks (very good for Secret Identity purposes). We are charming and suave. We may throw parties and carry on like we haven’t a care in the world during the day, but when night falls, we are fighting an epic battle. Try as we might to keep our two worlds separate, at some point, the edges blur, and they bleed into one another.

Note from Nic: Please ignore the dramatic overtones of this post. It is impossible to write about Batman without a flair of drama befitting…well, a pulp-fiction comic.

This happens to Batman a lot. (SPOILERS AHEAD, tread carefully…)

For instance, according to the Christopher Nolan trilogy, Bruce Wayne has a childhood friend named Rachel Dawes. Despite his best efforts to keep his Batman life and his Bruce Wayne life separate, he finds that he cannot. Rachel gets tangled up in the chaos. Batman tries to make the right decision when faced with a threat from the Joker, but it doesn’t matter. There is no right choice. The Joker gets the upper hand and in the end, Rachel falls victim to his scheme. No matter what Bruce does, there will always be a Joker (or a Two-Face or a Catwoman) to necessitate a need for Batman. Guilt ensues.

This is how that plays out in a Chronic life (thankfully, only metaphorical, not physical, explosions are involved):

Nic tries to keep her Nic life and her Chronic life separate, but she finds that she cannot. At the most inopportune times, a symptom (aka, the villain) pops up, so she leaves what she is doing to go fight it. Keeping up a façade of “Everything’s Fine” to mask the fact that she is a Chronic-Illness Fighting Vigilante proves to be exhausting, and she finds she cannot keep it up. In trying so hard to make the right decision (keep up appearances vs. share her secret), she finds even the “right” one doesn’t matter. While she was focused on the threats that kept bombarding her, friendships, dreams, and other facets of her Nic life died tragically while she was on Chronic-watch. No matter what Nic does, there will always be a Symptom (or two, or twenty) to necessitate a need for a Chronic-Illness Fighting Vigilante. Guilt ensues.

For Bruce Wayne, the only way to end this push-pull between his Bruce life and his Batman life is to fake his own death and leave the crime-fighting to Detective John Blake (Robin, anyone?).

Luckily, I don’t need to be that extreme. What I realize, that maybe Batman doesn’t, is that I don’t have to try so hard all the time. It doesn’t have to be all up to me when that Bat Signal goes up in the sky. There are police officers, detectives, and special agents (a.k.a. medications!) that I can call on to help me fight the villains. I’ve already Assembled my Avengers (see Avengers, Assemble!, July 21), though in the DC universe, that’s called The Justice League. When I take a step back from the war I’m constantly fighting, I can see all of the opportunities I have been missing when I had my masked-crusader blinders on. If I can allow myself to NOT be the #1 eradicator of all threats great or small in Gotham City for <justasecond> I can start to live a life where villains are more on the periphery, while real life is front and center.

This is not to say that either Batman or I are giving up. No way, we heroes don’t quit. But we can reprioritize a little. Everyone needs to shift their focus sometime. We will always remember what we’ve lost to the Villains (heck, it shaped us, didn’t it?) but we recognize when it’s time to ask for help so that we can move on and move forward.

Ok, that’s enough of that stretch of a Superhero metaphor. I do my best Chronics, I really do.

In honor of Batman Day, here are some of my favorite things about Batman:

~The Batmobile. I’m not sure this needs further explanation. If someone said you could have the most exclusive, fancy car in the universe or you could have the Batmobile, I’m pretty sure we’d all choose the Batmobile. Technically, I think it is the most exclusive, fancy car in the universe.

~Alfred. He’s always there when you need him and he’ll never let on to where you go after hours. Essential Superhero personnel right here.

~Utility Belt. I could really use one of these. I have already gone into detail about all my Chronic stuff (I get by with a little help from… July 11). Wouldn’t it be nice if my most essential items could be right there on my belt for ease of use? I am majorly jealous, Batman.

~The Bat Signal. No matter how advanced our methods of communication, I don’t think anyone is ever going to pick up their iPhone and dial 1-800-Batman. Nope, why use such a slow medium when you can just project this guy’s logo into the night sky and he’ll come running? That is true customer service.

~Will Arnett as Batman in The Lego Movie: hysterically captures the aloof, obsessive, broody nature of the Caped Crusader in one tiny little yellow piece of plastic. Well played, Arnett, well played.

Avengers, Assemble!

Note: This post contains spoilers about The Avengers (2012). Please be forewarned. Also, why haven’t you watched The Avengers (2012) yet? It’s fantastic and the sequel comes out in May. What are you waiting for?!

I see a lot of doctors.

I bet you do too, Chronic reader.

A good medical team is essential when you have a chronic illness. Chances are, you’re going to be spending a lot of time with these folks, so putting in the effort upfront to find doctors who 1) are knowledgeable about your illness, 2) have access to resources you wouldn’t have otherwise, and 3) are friendly, is really important.

That being said, it can be really difficult to find the good guys. Usually, the first few doctors you see are going to see closely resemble these guys:

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No offense to The Wizard of Oz…

That is, they are lacking heart, brains, and/or courage.

Run, run, run from these guys. It is not worth your time or your insurance deductible to work with a doctor who would like to “give it a shot” (<–actual quote from actual doctor who, surprise!, I did not see again). “Give it a shot” is what you say when someone invites you to play a game you aren’t familiar with, or when you’re asked to guess how many M&M’s are in a glass jar. It is not what you say to someone who has a medical condition that needs attention.

What is a Chronic to do? All these doctors, all these choices. What does a good medical team look like?

Avengers, Assemble!

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Earth’s Mightiest Heroes!

BAM!

POW!

These guys =)

Captain America…Rheumatologist

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Captain America, the first Avenger, has one reason for doing all the wonderful world-saving work that he does—he doesn’t like bullies. Neither does my rheumatologist. The main bully he is concerned with is the immune system. In healthy bodies, the immune system is your best friend, your own inner superhero who fights off invaders. But what happens when that personal superhero goes rogue on you? Now your immune system is going haywire, not only attacking bad guys the way it should, but also good guys too.

Call in the Captain.

A rheumatologist can test you for immune dysfunction through blood tests, though sometimes that trickster will produce a negative result even if it is acting up. Your rheumatologist has to determine if your symptoms warrant treatment anyway, and what to do if that’s the case. Personally, my rheumatologist has 1) warned me about the negative long-term effects of my medications 2) helped me to improve my sleep quality 3) drained a swollen finger joint 4) referred me to a dermatologist to make sure my Polymorphous Light Eruption wasn’t Lupus, and 5) run blood tests to show that while clearly my immune system is overzealous in its efforts, it has not yet reached Mega-Villain status. Plus, he happens to be very earnest and just wants to fight the good fight. Truly Captain America qualities.

Iron Man…Cardiologist

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Cue the Metallica soundtrack, the cardiologist has arrived. Most cardiologists have a tiny bit of a God-complex, a la Tony Stark. Don’t worry too much about this. I have yet to meet one without it, and I guess I understand- they do spend their days playing with human hearts. You know, keeping them beating and what-not. You can be brain-dead and still be alive, but you can’t be heart-dead and still be alive. So yeah, just ignore the complex. Occupational hazard.

My current cardiologist is pretty cool. Blunt and straight forward, this Iron-(wo)man is not going to go easy on me if I skip my cardio-workouts or “forget” to wear my compression stockings. As she is whip-smart and could probably build an Arc Reactor out of paperclips and chewing gum while sitting at her desk between patients, I trust her with my heart and all its functions. The fact that she works out of a big hospital center and has access to their resources (how very Iron-Man esque!) makes me feel like I’m not going to miss out on any new advances in research. She even has her very own Jarvis, a super knowledgeable cardiac nurse, who takes down all my information and vitals each appointment. Very cool!

Hulk…Biofeedback Specialist

IMG_0574I had to laugh the first time that I saw the Edward Norton version of The Incredible Hulk (2008) (the only version that counts, by the way, as we Marvel fans pretend the Eric Bana version (2003) didn’t really happen). According to this movie, Bruce Banner becomes the Incredible Hulk when his heart rate reaches the mind-boggling 200 bpm (beats per minute) mark. As a POTSie, I am familiar with this number, in that I have seen it more than once on my own heart rate monitor. POTSies have high heart rates (tachycardia), it’s just the way it is. For instance, my current resting heart rate is 95. Non-tachycardic people have a resting heart rate much closer to 70. Meds can only do so much, and may even have a reverse affect and make your heart rate too low, a situation called bradycardia (which happened to me, causing a non-epileptic seizure where I turned blue from lack of bloodflow/oxygen to my brain…very not good). Is there another way?

Yes. Enter the biofeedback specialist.

Calling her the Hulk is actually misleading, as really, I am the Hulk and she is my teacher to un-Hulk-ify me. But let’s go with it, as she happens to have a sweet, intelligent, Bruce Banner thing going on.

Hooked up to a monitor that tracks my heart rate, body temperature, and skin conductants (sweating), I am led through various guided mediations and breathing exercises by my biofeedback specialist, with the intention of calming down my nervous system. The 3 things I’m being monitored for are the most obvious ways to measure success of these super-relaxation techniques. Calming your heart rate has the added bonus of keeping your body from releasing adrenaline, which causes all sorts of Hulk problems. As long as I remember to use my tools, I can keep my personal Hulk-iness under control. Definitely a key member of my team! You can read more about my experience with biofeedback here.

Thor…General Practioner (GP)/Family Doctor

IMG_0573I promise that this has nothing to do with the fact that my GP happens to be of Norse-descent and has long, flowing blond hair that he routinely grows out and then shaves to donate to make wigs for kids with cancer. Thor is nothing without his hammer, and my GP is quite the wielder of his hammer of choice, his prescription pad. When I’ve got good old normal people heath problems (fever, runny nose, strep throat, etc.) GP is on the front lines to help me get back to fighting shape. Like Thor, he’s got his own team of Lady Sif (head receptionist-no one sees Thor, I mean, my GP, without getting through her first!) and the Warriors Three (two other office workers and a very efficient phlebotomist for blood workups), who never let him down. While not a chronic illness doctor, per se, having a trusted GP is very valuable.

<Also, funny story, he is also my mom’s GP-they met right after I was born when he heroically saved her from meningitis. She claims he looks the same as he did 25 years ago. It must be the hair…or that whole god of thunder thing>

Agents of S.H.I.E.L.D

Black Widow…Pharmacist

IMG_0570Is it just me, or does Black Widow just not get her due? She is always right there, being the kick-ass assassin that she is, and no one gives her any credit. She doesn’t even get to be called an Avenger in the movie; rather she is an Agent of S.H.I.E.L.D. But don’t let the lack of official Avenger titledom deceive you. She, like my stealthy neighborhood pharmacist, is essential to the team.

A good pharmacist will search out tricky hidden threats like drug interactions and allergens hiding in the inactive ingredients. Like Black Widow, she shows them no mercy and immediately calls Cap, Iron Man, or Thor to arrange for an alternative. A super spy, she knows just which manufacturer I get my Midodrine from (there are multiple, and they all make them just the slightest bit differently in terms of inactive ingredients-weird) and somehow, they are always in stock. I elect her MVP of my chronic team.

Nick Fury…Mom

IMG_0569Ok, so my mom is not a patch-eyed Samuel L. Jackson. But she commands a room like one! Nick Fury’s job is to keep all the Avengers on track. Mom keeps this train a-chugging. When I am unable to keep up with the wrangling of my medical team, it’s Nick Fury/Mom who steps up and takes charge. I know, I know, there are some of you out there who are going to take issue that my mom heads up my special operations-team. She would also probably rather play the part of Stan Lee, Marvel Comics Creator and seriously awesome older gentleman, who simply makes a special cameo appearance in each of Marvel’s movies (he’s the Easter Egg!). Yet, while I am more often than not my own advocate, sometimes I need help as I am just busy being…

Agent Coulson…Me

IMG_0568Agent Coulson finds all the Avengers. He’s the cruise director under the guidance of Nick Fury. And in the end, he is the reason the Avengers finally get their act together and come together as one to save the world.

Stay with me here…

(SPOILER ALERT AHEAD)

 

 

In The Avengers, Loki is the bad guy:

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I don’t actually own a Loki, so this is from Google. I only hang out with heroes =)

My personal Loki is Chronic Illness.

At a pivotal moment in the Avengers movie, the heroes and Nick Fury, working together, have Loki under arrest in their floating space station in the sky. They think that they’ve got him under control.

Except…

Loki always finds a way to trick everybody. He’s sneaky and twisty and dark and malicious, kind of like Chronic Illness is. You think you have him tacked down, and just as suddenly, he’s out of your grip.

Agent Coulson brazenly tries to stand up to Loki, when Loki escapes and no one else is around to help. Coulson is not trained. He does not have endless resources like Iron Man, super serum like Captain America, Norse-god powers like Thor, or years of studious learning like Bruce Banner/Hulk. But he’s brave and he tries his best.

And then Loki defeats him.

All the Avengers rally together. They go out to defeat Loki, not just because in general, he’s the bad guy, but also because he’s taken out one of their own.

What they don’t know yet is that by the power of <greedy> screenwriters wanting to capitalize on movie success with a television show,

Agent-Phil-Coulsonlives

Agent Coulson lives. How he does it, no one knows (unless of course, you are Clearance Level 10). But he’s back and he never gives up fighting the bad guys, whatever form they take.

Kind of like me.

It might look like I’m defeated, but I’m not. Each time I get knocked out (or pass out, more like it!), I come back, a little bit better than before. I am still here, just like Agent Coulson.

So Assemble your own team of Avengers, Chronics, but never forget your own power.

Excelsior!

I get by with a little help…from this stuff too!

I did forget stuff!

It only took me a week to remember…

It’s probably because I use this stuff so often that I forget that other people don’t necessarily use these things.

First up, how did I make it through my beach vaca, being allergic to the sun and all?

Sunscreen, of course, and a handy dandy long-sleeve bathing suit. I am happy to report that according to E! Entertainment Network and the Today Show, by wearing a “rashguard” at the beach this season, I was truly fashion forward. And you know, not covered in sun blisters. But either way, totally happy.

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Next, I’ve got some products. My favorite products, actually, as without them I am often quite cranky. And chapped. You see, part of POTS is an inability to retain water (hey there, automatic bodily function!). I have to eat an unusual amount of salt (see The Heart Attack Diet, June) and drink a TON of water and/or Gatorade.

While that might help my insides not descend into dehydrated awfulness, it doesn’t make the-dare I say it- chronic dryness go away. I have dry eyes, dry mouth, and dry skin, and although I didn’t need a doctor to tell me that, no less than 3 have (optometrist, dentist, dermatologist), just for giggles. So I like my products.

IMG_0552 Next up, are the things that help me sleep better. Yes, I remembered my sound machine in my original post, but I seem to have forgotten:

1)   My bed risers (These only go under the head of the bed. Tilting your bed is somehow supposed to relieve POTS symptoms while you sleep. It’s too much for my brain to explain right now so Google “elevate head of bed POTS” for more info. Ignore the POTted plants google is trying to sell you as its first result.)

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2)   My super squishy mattress pad

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3)   My wedge pillow (which can either go under my head to help reduce acid reflux, or under my feet to help the blood drain back to my brain. Hooray for multi-purpose household items!)

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Not sure how I managed to forget this stuff as I am practically the Princess and the Pea every night trying to get my Fibromyalgia-pained body into a comfortable position. There are also a lot of good old fashioned pillows involved in this endeavor, plus a super soft extra blanket, and a couple of elephants, thrown in for good measure. In case you haven’t caught on yet, I like elephants.

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One more thing to add to my old lady list: A nightguard! This little apparatus is so helpful (it’s FDA approved for the treatment of migraines), but somehow feels very um… nerdy? to me. But then I have to remind myself: No one likes to grind their teeth. No one likes migraines caused by facial muscle tension. No one likes Vanity. Get over yourself, and use the nightguard. It really does work!

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I know, I know, it’s a good look.

Last on my nightly to do list, after I have properly moisturized and put in my night guard, but before I jump into my fairy-tale bed is to put the gate up. Yes, a baby gate:

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Suki really does photobomb EVERYTHING

You have 15 seconds to laugh at me-GO!

Ok, now stop. Let’s remember that I don’t wake up at night to take meds. Let’s remember that I do wake up at night to go to the bathroom (not retaining water is a real pain). My room is across the hallway from the bathroom, and I have to walk past the stairs to get there. Let’s add 1+1 and realize that having a baby gate across the stairwell keeps me from falling down the stairs in the middle of the night. Seeing as how I do this when I am awake (See Starting back at 1, June), it’s a pretty good precaution.

Please feel free to feel bad for laughing now—GO!

…No, no, it’s ok, don’t feel bad.

…No really, feel a little bad 😉

There you have it, more stuff that I use to get through the Chronic day (or night).

Apparently, being Chronic comes with a lot of baggage.

Please feel free to find hidden meaning in that statement.

I have a bunch of fun stuff to talk about next week, namely Superheroes, as I recently realized that, while I note in my About section that one of my unofficial diagnoses is “talks too much about Superheroes,” I have yet to actually talk about Superheroes. In 5 whole weeks. There is something very wrong with this picture, and so I aim to fix it. See you then, Chronics!

Working it out, Part 2

Ok, so we learned the most important exercising lesson on Monday:

Patience, young grasshopper.

We are all set to go nice and slow, with slight increases every once and a while to help us build up to a place of not just quantity, but also quality exercise.

Go us!

Um…so…what exactly should we be doing?

If you are POTSie, if you are Fibromyalgia-ie (is there an adjective for this one? I haven’t heard it yet), if you are Chronically fatigued or pained, chances are recumbent exercising will be recommended to you.

What does that look like?

Traditionally, using either a rowing machine or a recumbent bicycle. Or both.

How do I start?

Anyway you want to (slowly! carefully!), though it may be helpful to find out if you can spend some time at a magical place called Cardiac Rehab.

Cardiac rehabilitation centers are special gyms, usually located in or near a hospital, where people with cardiac conditions/medical conditions that affect the cardiovascular system (POTS!) can work out in a monitored, safe environment. Exercise physiologists hook you up to a portable heart rate monitor and take your blood pressure at intervals while keeping track of what activities you do and your “perceived rate of exertion” (on a scale of 1-10, how did that exercise make you feel?). This can be a really good place to start an exercise program, as it gives you a comfort level and a sense of when you are pushing too hard or not enough. However, there are some important things to keep in mind about cardiac rehab centers:

Mostly, the people you find here will have qualified for AARP membership before you were born.

Mostly, the people you find here have had a heart attack or some sort of bypass surgery.

Mostly, the people you find here will be very curious about why you, Chronic Young Adult, are also in cardiac rehab.

Mostly, the exercise physiologists will warn you NOT TO ENGAGE with said curious, older patrons, as they will talk your ear off and distract you from your workout.

Mostly, you will ignore the exercise physiologists because these curious, older patrons remind you of your sweet grandfather and, as you don’t want to be rude, OF COURSE you talk to them.

Mostly, the women will scoff about how young and pretty you are (mean girls are everywhere!), and the men will ask you a) if you come here often and/or b) if you’re doing anything after (pick-up artists are also everywhere!).

Mostly, you will TRULY REGRET your decision to ignore the exercise physiologists and engage with curious, older patrons.

You know, just a friendly heads up =)

For me, after I completed a stint in rehab (as my mom tends to call it, and then, noticing surrounding people’s odd looks, will announce, “CARDIAC rehab. She has a HEART condition”, sending them scattering #awkard #sorrySportsAuthority #ItsActuallyAnAutonomicProblem), I decided I like working out at home better. First off, I can work out a little more as I can control the amount of stimulus around me (gyms have ceiling fans, fluorescent lighting, weird elevator music and funny smells), which means I have a pinch more symptom control. Also, it’s harder to not exercise when your rowing machine is staring you down as you eat breakfast.

A tip I’ve heard often is that it can be helpful to have a workout buddy. I’m not so sure, as mine likes to hog the yoga mat:

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Then gets impatient for her turn on the rowing machine:

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And finally decides it’s all too much, she needs a nap, while I continue pedaling away on the recumbent bike:

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#slacker

Hopefully your buddy is more motivating than mine.

So, we’re pedaling, and we’re rowing. We’re building up a good baseline. We’re getting better and better, healthier and healthier, every day in every way (full disclosure: I repeat this at least 3 times while working out, so that my brain gets the message as much as my body does). We’ve made it to two 30 minute sessions every day (this is my doctor’s recommendation for me). As it’s gotten a bit easier as each week goes by, we realize something important:

This is kinda boring.

There is a difference between your body getting bored with your exercise and your mind getting bored with your exercise. When your body gets bored, you hit a “plateau”, where your body stops making progress at that level. When this happens, trying something new (water aerobics! beginner strength training!) will help you break free and start moving forward again. It will probably take your Chronic body a while to get to this point though.

Your mind is going to get bored a lot faster though. Some ideas to help you stay engaged:

1)   Music! Lady Gaga happens to work every time for me, but if she’s not your style, find something that is. At Cardiac Rehab they played a Golden Oldies CD on repeat (surprise, surprise). Maybe you haven’t played your Backstreet Boys albums since 8th grade, as you’ve been embarrassed to still know all the words to “Everybody” (which we have established makes you OLD now, see Keeping up with the POTSies July 7). Pay attention to the tempo of the songs you are playing- they’ve done studies that show it can influence the tempo of your workout!

2)   Kick-ass sneakers. These are mine:

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I only wear this pair of sneakers (trainers, joggers, tennis shoes, gym shoes) when I exercise. It’s become Pavlovian. I get up in the morning, put on these shoes, and my brain knows it’s time to go.

3)   Crazy workout outfits. It’s a proven fact that the more ridiculous your workout clothes, the more efficient your workout. Source: I have proved this, therefore it is fact.

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You mean not everyone lifts weights while wearing a THOR muscle shirt?

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Since you can’t really see the pattern of my leggings in the first picture. This is what they look like up close, FABULOUS, n’est pas?

4)   Watch TV! I can see the television from my recumbent bike. Sometimes you just need to catch up on Scandal while pedaling out those miles.

5)   Use your imagination. Are you biking on the coast? Are you rowing across a swan-filled pond a la The Notebook? One of my favorite vacations was to go to Dollywood in Tennessee (I actually have a magnet that says “Dollywood is My Happy Place”). I’ve been keeping track of how many miles I bike, with the intention of “biking” to Dollywood. It gives me something to think about and work towards!

Ok, Chronics, there you go. I hope you are all able to Work It Out for yourselves. Let me know what you’re up to on my Facebook page: http://www.facebook.com/iamchronicallywell

Working it out, Part 1

Good Morning! Good Morning! Sun beams will soon smile through! Good Morning, Good Morning to you and you and you and you! (Singing in the Rain, 1952)

Yes, I am in a good mood this morning. “Why?” You ask?

Because I worked out today =)

I know there are some Chronics out there who are immediately going to scoff and yell “Blasphemy!” at me- if you worked out this morning shouldn’t you be tired and cranky and all POTSy and fibromyalgia-pain-y?

Well maybe, if this were my first or second (or third or fourth) time attempting exercise. It takes some getting used to.

However, once you have stuck with it (a physical therapist I spoke with recently said for a minimum of 6 weeks), your body WILL adjust and get used to it. In fact, your body won’t just get used to it, it may even start to like it.

<Please insert horrified gasps here>

I am not going to lie to you and say that I have always liked exercise. There have been times when I have distinctly hated exercise, namely gym class in school and that major yuck period I had when I needed to use a wheelchair (see I get by with a little help from… July 11). Moving was not fun then because in gym class I had no input on the type of exertion I performed (running timed miles for the Presidential Fitness Award and playing dodgeball are enough to make anyone hate P.E.) and in my yuck period getting up to go to the bathroom made me dizzy so any movement felt awful.

So how did I find my way to liking exercise?

Trial and error. Scientific, I know.

Before I could do that though, I’ve had to get over some stuff in my head. When you are diagnosed with a chronic illness, chances are your doctor can’t give you much in the way of a treatment plan. Sure, a few prescriptions can go a long way in symptom management, but they are not going to heal you or make your illness improve. 98% of doctors (I made up that number) will tell you that the only way to make your health “better” is to exercise. Exercise, they say, is the closest thing we’ll get to a magic pill.

But then they very often don’t tell you what to do. Just exercise, and you’ll be good.

“Exercise” is probably one of the broadest terms you can use and it means something different to nearly everyone. If your doctor gives you an actual plan with specifics, please count yourself lucky and consider posting it publicly on Facebook, as so many of us have not been given any direction. (Word of warning though- always check with your doctor before starting an exercise plan that you randomly saw posted publicly on Facebook, #catch22)

The thing I had to get over most was this: If exercise is the only thing that has the potential to heal me, then doing a lot of exercise is the best thing ever, right?

Not so much.

I had the really great pleasure to hear Jenni Prokopy of ChronicBabe.com speak this weekend. (She is awesome-check out her website!!) At one point in her kick-ass speech, Jenni said that after being diagnosed with Fibromyalgia and told that exercise would help, she tried to “swim away [her] illness”. For 30 minutes every day she swam as hard and as fast as she could, thinking that it would make her better. Except that the more she pushed herself, the worse she felt. Instead of taking a step back from her routine, it made her push even harder. Because that was the way to wellness right?

I have been there. I have done that. 4,976,000 times (I made that number up, too.) Walking on a treadmill. Running on a treadmill (in which I found out the hard way that those little emergency shut off-safety clip things that attach to your shirt really do work!). Zumba. Pilates. Yoga. High Intensity Interval Training. Ballet-inspired workouts. Whatever is playing on the OnDemand free fitness channel.

Push, push, push, push, push.

But that’s no good.

As Ice Cube would say, You better check yo self before you wreck yo self.

Really. The context is different (clearly) but I mean it.

Impatience is one of my less flattering qualities, as I am sure it is for many other Chronics. “I’d like to be better yesterday, please!” is our constant refrain. However, being overzealous (about anything) only leads to trouble. I have had to learn to chill.

Seriously.

Calm down.

It’s frustrating to start with 5 minutes. Your brain will tell you this is not enough. Your body might tell you this is too much. It can feel impossible to know which one to listen to. (Hint: it’s not your brain)

After you’ve done 5 minutes each day for a week, then you get to move up to 10 minutes. After that, you get to move up to 15 minutes. Another week and it’s 20 minutes.

Then you might have a flare up of some kind and not be able to do anything for a week (or a month). And so you go back to 5 minutes. Then 10 minutes. 15 minutes again. Another crash or flare up. Start over at 10 minutes this time. Lather, rinse, repeat (though “adjust” should be in there somewhere too- you may not need to start over from scratch all the time, but it does help to start from a decreased level when you’ve had to take time off).

I am here right now myself. I got myself on a good schedule of exercise (more to come on Wednesday about what I specifically do), and had gone for my personal best stretch of 7 weeks with no health interruptions. Until, of course, that stinky little Polymorphous Light Eruption took over my arms and face for the entire month of June (update: it’s only just gone away. I still have just the faintest hint of rash on my right arm though). Exercise felt horrible (sweating made the rash worse) and my consistency went out the window. I tried to keep going with an every-few-days routine, but it was sporadic. Then I had to take Prednisone, a steroid, to get the PLE under control, and the side effects made me miserable so I just plain stopped exercising.

The great thing about exercise though, is that at any time, you can (re)commit to it. It doesn’t have to be the first of the year, or your milestone birthday. It can be Random Monday in the Middle of the Month. Which happens to be today.

Happily for me, before I stopped exercising, I had made it past that <approximated> mark where your body changes its mind and decides it likes exercise. I actually missed it when I was off being a Prednisone-zombie. I kind of couldn’t wait to get back to it.

Today I got back to it. Yes, truth be told, I’m a bit tired, a bit POTSy, a bit Fibro-pain-y. AND, I’m also in a very good mood.

I heard a rumor it might be these things called endorphins. =)

I get by with a little help from…

All this stuff…

In writing about my compression stockings for Wednesday’s post, I was reminded of all the other things that I use, either currently or have in the past, that have made my Chronic life a bit easier.

I feel like they also need a little blog post of recognition, if only to assure these inanimate objects that I love them and appreciate their service.

Wheelchair

First off, I have to address the tricky, tricky Chronic controversy here. There are some POTS camps that say that you should never use a wheelchair, because you will get lazy and grow dependent on it and your muscles will atrophy and you will NEVER EVER GET BETTER (I’m sure they are not truly that drastic, but that’s what it sounds like to me when they get on their soapboxes and start talking…). Listen, I am not lazy. I have never been lazy, I doubt I ever will develop laziness outside of the normal and societally acceptable I-watch-TV-for-an-extra-hour-on-the-weekends laziness. But for a good amount of time (2008-2010ish) I could not walk by my self more than just around the house. I would get all fainty and weird and have to sit every few steps, which makes doing anything take a lot of time. Plus it’s gross if there isn’t actually anywhere to sit and you end up on the sidewalk because you need to sit down RIGHT NOW. Also, when you faint or near-faint, your body becomes dead-weight. I am apparently really heavy when I am dead-weight. I wouldn’t know, but my mother and her thrown-out back agree that it was much easier to just wheel me out of the way instead of trying to pick me up off the floor. I will have to take her word for it.

So I used a wheelchair. This is my wheelchair, which a group of POTSies in 2009 agreed was cooler than all other wheelchairs, as it is plaid. At one point it had a name (you know you have a Chronic illness if you start naming your assistance devices!) but I don’t remember it anymore (you know your Chronic illness is improving if you can’t recall the names of your assistance devices! Or you just have brain fog…). Also, there is only one picture in existence of me using my wheelchair, as it made me super self-conscious at the time. But I really wanted a picture with that Barbie Bug at the Barbie Convention (long story-random fact, I like Collector Barbies), so there it is.

IMG_0491barbiecar Shower Chair

There are lots of chairs involved when you have POTS or other illnesses that involve fatigue. This guy can be used in the shower, when showering is exhausting, and also doubles as a regular old chair that sits next to the sink to use when brushing your teeth, drying your hair, painting your nails, putting on your makeup, or anything else you might do in the bathroom, becomes exhausting.

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Detachable Shower Head

Besties with the shower chair, the detachable showerhead comes in handy when you are sitting in the shower. It’s much nicer than trying to figure out just where to put the shower chair so that you are actually under the water, but not drowning. Added bonus in that it makes cleaning the shower much easier!

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Shower Bars

My shower is full of things to grab onto. A few years ago we had a horrible toxic mold problem stemming from a pinhole leak in a pipe in the wall that we had no way of knowing about until it was Too Late. So we had to have the entire bathroom redone, which was horrible (home construction in any form is an Ordeal), but also not so bad as I got to have safety bars drilled into the shower tiles. I’ve got the standard one in the middle, plus one on each end. We got these nifty shelf-safety bar combos at Home Depot and they are the greatestthingever. Also take note that I have suction cups to hold my razor and loofah sponge at eye level- the less reaching the better!

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Sound Machine

This one’s not just for Chronics! I have a lot of trouble sleeping. My mind is in constant motion and the only thing that helps is to turn this baby on and up. My sister hates it because she thinks it sounds like water running (not good when you’re trying to sleep) so I don’t bring it with me when we go on vacation and have to share a room (see, I make Sacrifices, too!). But any other time, this guy is right by my bedside, lulling me to sweet, sweet dreamland.

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Reading Glasses and Large Print Books

I am really a 90 year old woman. There are a number of things I do that would lead you to conclude this, namely my penchant for compression stockings and the fact that I don’t always think 8:30 is such an unreasonable time to go to bed. If that didn’t convince you, the fact that at the ripe old age of 20something, I need reading glasses and I prefer large print books from the library would. And why shouldn’t I get large print? If they print it and I can read it without triggering a migraine (because some of those printings are small in regular books) then I am going for it. I read all of the Hunger Games books this way. It was fantastic.

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Iphone

I think a lot of people would agree that a smartphone has made their lives, Chronic or not, a little (or a lot) easier. For me it was nothing short of miraculous. The ability to make a never-ending list of alarms to match my never-ending list of medications-at-different-times was key. Basic stuff like ICE (in case of emergency) apps make me feel a bit more secure. Plus I can do fun stuff like check this blog and its Facebook page, and take pictures of all my super helpful appliances to upload.

I am quite sure that the list of things I use to make my Chronic life a little easier could go on and on. These were the first things that came to mind. I hope my other appliances and apparatuses and devices of assistive nature don’t get jealous that they weren’t included. I’m sure they’ll pop up in another post eventually!

In which I try to make Compression Stockings “happen”

Are your legs tired?

Do your lower body blood vessels have a heck of a time fighting against gravity to push your blood back upwards to important organs like your brain?

Do you find yourself constantly having to stop what you’re doing so that you can lie down and put your feet up over your head?

Then have I got the product for you!

Here’s our model, Nic, showing you all the ways that Compression Stockings can make your everyday activities a little more enjoyable:

Checking out the patio furniture while you wait for your family members to pick paint colors at the hardware store! 

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Lounging on the balcony of your beach condo!

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 Even collapsing after a long day of running errands!

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Let’s take a listen to what our model has to say about this groundbreaking product…

Hey Nic, how do you feel?

Why, positively geriatric, <disembodied-announcer-voice>, thanks for asking!

 

…They do kind of work though.

Blood pooling is a hallmark symptom of POTS. This means that blood vessels in the body don’t adequately contract in response to gravity, and so instead of your blood circulating throughout your whole body the way it’s supposed to, it gets stuck somewhere-it pools. This usually happens in your stomach, legs, and feet, but can also happen in your hands. I used to be able to do a really nifty party trick where I’d hold out my hands to show my audience their odd purple-red color. Then I would hold my hands above my head, give them a little shake and a count of 5, and then put them out in front of me again. By this time, they would be completely white as holding my hands up had “emptied the pool”, if you will. Now I’m on medication and it isn’t as severe any more, so I’ll have to find a new trick (juggling? Maybe not). But I do still have a good amount of blood pooling in my legs, that nothing really seems to help, except maybe the dreaded compression stocking.

I have never been a fan of compression. I happen to be claustrophobic, and I think my thighs are too.

However, one of the very first things that a cardiologist will suggest when you are diagnosed with POTS is just that, compression, and usually lots of it.

I have previously tried the socks (closed toe to kneecap), and let me tell you, those suckers are NOT worth it, unless you particularly like not being able to feel your toes while all the blood simply pools in your upper thighs, giving them an odd, heavy, tree-trunk like feeling.

Personally, my cardiologist is adamant that I wear the full pantyhose. “Your blood vessels and gravity are just not friends,” she tells me. “And so you need help to thrust the blood upwards, back where it’s supposed to be.”

If gravity is not my friend, I guess my new compression pantyhose will have to be.

Pros: While wearing them, I can stand for longer periods of time; I get dizzy less frequently when I am out and about; my blood pressure is higher, which means my heart rate is lower (a good thing!). Also, my legs are never cold and apparently, from far away and in blurry photographs, my legs just look really tan.

Right? Just really tan, with weirdly pale toes!

Right? Just really tan, with weirdly pale toes!

Cons: It takes FOREVER to put them on and take them off. I apologize to my sister with whom I share a bathroom at home, as I have added a good 2 minutes to the amount of time I am in there (every time!). When I first put them on in the morning, I actually have to lie down for a minute once they are on, as the exertion gives me tachycardia…but then I have them on, which helps the tachycardia go away faster (tricky, tricky!). Also, it’s impossible to not get runs in them, as a lot of tugging is involved and hangnails that you didn’t even know you had will leave their mark.

I figure I can probably deal with the Cons as the Pros are pretty good.

Now all I have to do is convince everyone else to wear them so that I don’t have to look this good all by myself.

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I figured I’d find a lot of people wearing compression stockings at the POTS conference I went to this past weekend. Surprisingly, there was only one other girl imprisoned in— I mean, stylishly sporting— these spandex-nylon blood vessel squishers. Apparently, a lot of people are troubled by the discomfort and hassle, or have given up on them too quickly. I for one, needed about 2 weeks to get used to them and how they affected my bodily functions.

My new compression clad buddy and I immediately delved into anecdotes about the Cons of our stockings (because let’s face it, it’s funnier than the Pros) and even took a compression stocking selfie:

Stockings come both open and close-toed!

Stockings come both open and close-toed!

I am pretty sure that people were jealous.

Right?

Cause who wouldn’t be?

Only the cool kids wear them.

 

*Attention Chronics: I have created an official Facebook Page for this blog! Search for “I am Chronically Well”. I am the page with the happy butterfly for a profile picture as I have yet to find a better one…a logo to come in the next few weeks perhaps? Anyway, please Like the page, and feel free to send me questions, feedback and make suggestions for future blog posts!

*Also, purely for entertainment purposes, BLOOPERS for this post:

IMG_0317My sister may be kick-ass when it comes to yelling at jerks in parking lots (see The Start of Something, June 16), but she is a pain-in-one when it comes to taking pictures of me for this blog (love you, ladybug!). This resulted in me trying to take my own picture, and then her laughing and taking a picture of me taking a picture of myself. Cause that’s what big sisters do. =)