Emily M. DeArdo

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health

You Can't "Snap Out Of" Depression...

healthEmily DeArdoComment
“Irises”, Vincent Van Gogh (I saw this at the Getty when I visited in 2016.)

“Irises”, Vincent Van Gogh (I saw this at the Getty when I visited in 2016.)

There are few things that make me as angry as willful ignorance.

I can understand people not understanding things about CF, or my hearing loss, or transplant, or whatever. They’re pretty rare things. There’s a learning curve.

What I cannot tolerate, or understand, is how, in the twenty-first century, people still think that you can “snap out” of depression, and that you just need to “be positive”, and that if you have depression, you’re just “giving up.”

And yes, those words in quotes? All things I heard over the weekend during a discussion about this on social media.

So, for anyone who believes that those things are true, some education:

  1. Depression isn’t the same as a bad day or a bad mood.

    Everyone has bad days. When I’m having a bad day, I say I’m being “Grumpy Cat.” If it’s a really bad day, then I’m “Grumpy Cat Deluxe.” But both those things are totally different from depression. Depression lasts. Depression doesn’t go away with a good night’s sleep, or watching a good movie, or working out, or going out to dinner with friends. Things that work to get you out of bad moods do not work for depression. They might help. But they won’t solve the issue. That’s because…

  2. Depression is a mood disorder that affects your brain chemistry.

    The Mayo Clinic says:

    “It's not known exactly what causes depression. As with many mental disorders, a variety of factors may be involved, such as:

    • Biological differences. People with depression appear to have physical changes in their brains. The significance of these changes is still uncertain, but may eventually help pinpoint causes.

    • Brain chemistry. Neurotransmitters are naturally occurring brain chemicals that likely play a role in depression. Recent research indicates that changes in the function and effect of these neurotransmitters and how they interact with neurocircuits involved in maintaining mood stability may play a significant role in depression and its treatment.

    • Hormones. Changes in the body's balance of hormones may be involved in causing or triggering depression. Hormone changes can result with pregnancy and during the weeks or months after delivery (postpartum) and from thyroid problems, menopause or a number of other conditions.

    • Inherited traits. Depression is more common in people whose blood relatives also have this condition. Researchers are trying to find genes that may be involved in causing depression.”


Did you get all that? Changes in the brain. Hormones. Inherited traits. Brain chemistry. These are not things that just “go away” because you want to “snap out of it.”

And also, they do not go away “if you pray”, and you’re not depressed “because you don’t pray enough.”

Let’s sum this up really fast. :

Depression is not something that you can snap out of. It’s an illness, just the same as cancer or CF. People with depression need help from doctors, including psychiatrists/psychologists, and this help might include taking medication.

Do not tell people to “snap out of it.” You wouldn’t tell someone with cancer to do that. Don’t do it with someone who has depression.

Depression is not rational.

Feelings are not rational.

If some one tells you not to be depressed because you’re alive, or you have a good job, or a good family, or a nice house, or whatever…..that person does not understand depression. DEPRESSION IS NOT RATIONAL.

If you want a funnier—but entirely true—take on this, visit this post by Allie Brosh.
(Go read it and come back. Really. What follows will make more sense.)

I especially want to note the part about the fish.

Someone asks Ally, what’s wrong? She says, my fish are dead.

OK. Her fish are dead.

The person says to Ally, “Oh! That’s OK! I’ll help you find them!”

That’s not the problem she has. The problem isn’t that they’re gone as in missing. They’re gone as in dead.

No amount of positive thinking will bring the fish back to life.

Same with depression. No amount of being told “how good you have it” or “how happy you should be” will change your feelings! Because it doesn’t work that way!

Please, people.

Stop telling people with depression to snap out of it. Or that they shouldn’t be depressed. This is what leads to people not talking about depression, which makes the problem even bigger, and then it makes people feel like they should be ashamed of it! And they shouldn’t be!

If someone you know is depressed, please listen to them. Don’t tell them to snap out of it.



Seven Quick Takes--Colorado, Mother's Day, and Mammograms

7 Quick Takes, travel, current projects, health, the bookEmily DeArdo4 Comments
seven quick takes.jpg

Linking up with Kelly!

-1-

I was in Colorado last week (hence why no blog posting!) for my sister’s bachelorette weekend. I’d never been to Colorado before!

One of the floral butterflies in Downtown Denver

One of the floral butterflies in Downtown Denver

The Collegiate Peaks in Buena Vista

The Collegiate Peaks in Buena Vista

Mel and I at Mt. Princeton Hot Springs.

Mel and I at Mt. Princeton Hot Springs.


—II—

I’ll write more about Denver next week, but here’s what I learned, in short, about going to altitude:

Drink a lot of water. Like, insane amounts.
Bring saline nasal spray. My nose was SO dry!
Bring a portable charger, because altitude seems to drain phone batteries faster
SUNSCREEN. ALL THE SUNSCREEN.

—III—

Our trip included Denver (my sister lives in Littleton) and Buena Vista, where the cabin weekend was held. I didn’t realize it was sort of desert-y down there. I should’ve expected it, but some how, I didn’t. I had never been in that sort of environment before, so it was definitely a new experience. I learned that I like green!

—IV—
Anyway, more on CO next week. It’s been awhile since I’ve done some travel posts, so it’ll be fun!

—V—

Amy Welborn wrote a great piece about Mother’s Day and parishes, and I’d encourage you to read it.
Mother’s Day is, to put it nicely, fraught. I really don’t think it should be celebrated as part of the Mass. Mass is for the worship of God, not for the worship of ourselves. If parishes want to do something for mothers (or graduates, or whatever), then they can do it after Mass. Blessings, etc.? After Mass.

I know so many people who are struggling with infertility. I, myself, will never have children. Let’s also think about people who have lost their mothers, or have not-great relationships with their mothers, or have other issues with their moms. Let’s realize this. Sure, mothers are important! (Love you, Mom! :) )

But do we need to make it such a big part of the Mass?

Same thing with Father’s Day. And also, I don’t think we do Father’s day nearly as much as we do mother’s day.

Celebrate your mom, but parishes, please do this after Mass.

And for the love of the Lord, do not make people hug their mothers at Mass! (see the comments in the article for that one.)

(And yes, I love my mother. :) This isn’t about not loving Mom!)

—V—

And because it’s my blog, I’ll expound a little more. One of the comments at the bottom of Amy’s post was all about “celebrating” at Mass. Having visitors stand up, or graduates be recognized, or birthday people be recognized.

I got one word for this:

NOPE.

People. Mass is not the time for this.

Mass is for THE WORSHIP OF GOD.

If you want to recognize birthdays, do it in a bulletin.

You want to recognize the grads? Have a reception in June after a Mass.

I CRINGE at the thought of making visitors stand up. I hate this. Why do you think a visitor would want to be recognized?! And what does that have to do with Mass? (This visitor never wants to be recognized. Ever. Just let me come to Mass.)

Yes, I realize I’m an old and cranky person here.

But I think it was Benedict XVI who said something like, if we’re applauding during Mass, we’ve completely lost the plot. (I’m paraphrasing, obviously)

Mass is not about us.

If you want to celebrate community things, that’s great. Do it after Mass.

—VI—

Well, that felt good. LOL. .

Writing of the book is going well. My next newsletter for subscribers should be sent out next week, so if you’re not a subscriber, do it now!

I’m 2/3 of the way done with the manuscript. This week has been some hard sledding but you know, the important thing is to get words on a page. So that’s been happening. You can edit words on a page. You can’t edit a blank one.

—VII—

I also had my first mammogram this week. My mom had breast cancer at age 47, so I had to get my baseline done 10 years before her diagnosis—hence, at 37. Since I turned 37 last month, it was time.

I was nervous about it—I’d heard horror stories about it hurting, especially with transplant scars (this might be TMI, but—for my transplant, the incisions are about where a bra underwire is).

But I had a great, careful tech, who made sure that nothing was pinching, and it wasn’t really bad at all. Yeah, the skin is being squished, but that didn’t really hurt.

Ladies—you need to get a mammogram at age 40. You might have to do it earlier, if you’re like me and have family history. Please, please, please check your own screening requirements and set this up.

(And finally, if you missed it, there was a yarn along on Wednesday!)




Listen Up! (For World Hearing Day)

essays, health, hearing lossEmily DeArdoComment
(c) Wikipedia

(c) Wikipedia

World Hearing Day was yesterday, and so I thought I’d put up links to the post I wrote last year, about my CI and how it works and ways people can make hearing better for everyone!

So if you missed them the first time:

Part I: How I lost my hearing

Part II: How the Cochlear Implant Works

Part III: Living with a CI

Part IV: Accommodations, i.e., the post that you should read even if you don’t read any of the others!


I am (hopefully!) getting my CI upgraded in the next few months. The current processor I have has been “obsoleted”, meaning that if it breaks, Cochlear (the company who makes my processor) won’t fix it, they won’t sell any more replacement parts for it, etc. Now, they do this, in part, so that insurance companies will pay for new processors, because if it can’t be fixed anymore, then, yeah. Probably need an upgrade. This one should be better and allow me to hear more, but I have no idea until I get it. :) I do know that it will have bluetooth capability so it can stream my iPhone sound directly into my processor, and this might be a big thing. We’ll see what happens and I’ll let you know!

And thinking about my CI is timely because of a conversation I had in a lung transplant group on facebook. We were talking about the toxicity of a certain class of meds, and that they are crazy hard on the body. Some people were adamant that they would never take a drug in that class.

But here’s the thing—all meds are toxic at some point. They just are. Tylenol is! I knew that the ototoxic drugs were destroying my hearing. But I decided I’d rather be alive, than dead with great hearing. It’s about choices. And sometimes, yes, you just have to cut out a class of drugs. The meds I took over the fall for a sinus infection have pretty much messed up my right knee permanently. I’m not really happy about that. But you know, I like being alive, I like that we managed to stop the infection without it 1) getting into my lungs and 2) requiring the big guns of IV meds and /or hospitalization.

It’s a trade off.



Seven Quick Takes--Stories from the Loony Bin

health, 7 Quick Takes, transplantEmily DeArdoComment
seven quick takes.jpg

Linking up with Kelly!

I’ve been wanting to write this post for awhile. Today’s a good day to do it, because this week, New York State passed the most incredible abortion “rights” law—a baby can be aborted essentially any time up to birth. If the mother wants that to happen.

Any time. We’re not talking about babies that aren’t viable here. We’re talking about babies that could be a week away from delivery.

(And be sure to read that post for the definition of “health of the mother” that the law used. It’s….interesting.)

Anyway. I am mad about this, of course. But at the same time, I feel like I need to write something funny to counteract this insanity that caused the state of New York to light up One World Trade Center pink to “celebrate” this law passing.

Look, my life hasn’t been a picnic. But at the same time, sometimes plain funny things have happened because of it. So, I present, tales from the loony bin.

(c) Erica Kay Photography. This year’s Christmas card photo.  L-R: Me, my mom, Sarah (new SIL) , Bryan (my brother), Dad, Melanie (my sister), Jason (her fiance)

(c) Erica Kay Photography. This year’s Christmas card photo. L-R: Me, my mom, Sarah (new SIL) , Bryan (my brother), Dad, Melanie (my sister), Jason (her fiance)

(Just a note before we start: some of the medical technology has changed. So you know, don’t go that’s not how these things work!)


-1-

Back in the day, I did a lot of home IVs. Basically, it’s IV meds you give at home, so I didn’t have to be stuck in the hospital for 2-3 weeks and could go to school and have a life. But that also meant that sometimes, there was a learning curve.

IVs have to be kept sterile—you can’t get them wet, you have to protect them. Now, when I first did home IVs, I would climb trees with an IV, but you know, I was young! :)
Anyway one time, the cap—the thing that protects the end of the IV line—got stuck. We couldn’t get it unattached, and this was bad, because then we couldn’t give the meds I needed.

So dad decided the best way to fix this was….with a pair of pliers. From his tool box. Grimy, gritty, dirty pliers. On a sterile IV line.

He came into my room with the pliers and I backed myself into a corner like a freaked out animal. “GET AWAY FROM ME!”
”What? We have to get the cap off!”
”At least clean them first! Use the alcohol wipes!”
(Fortunately, we could replace the tubing bit. We didn’t have to resort to the pliers.)


—2—

The night before my algebra II final my junior year, I woke up in the middle of the night. No, not because of Law of Cosine nightmares. I felt something wet.
I rolled over and saw that the sleeve of the t-shirt I slept in was bloody. Like, soaking with blood.

At the time, I had a PICC line in (peripherally inserted central catheter—basically a line that wasn’t under my skin, like my port is now, but went into a deep vein, so if we had problems with this, they became large problems.)

I ran into mom and dad’s room. “I’m bleeding.” Mom grabbed a towel and we went back to my room, applying pressure. Dad stumbled in with the cordless phone (this was 1999).

We called the direct line to Children’s and were put on hold while we waited for someone to answer our question. Were we going to have to go to the hospital? Was this really bad?

It’s around 2 AM, the lights are on in the hallway, and my brother and sister are standing in the doorway. Mom and Dad are arguing—what should we do? Should we do this? Should we do that?

At some point, Mom calls my dad something not nice.

And then we hear, “hello?”

We hadn’t muted the phone. The person on the other end had heard the entire argument.


—3—

Sometimes, though, it was a little funnier. Like the time Mel and I decided to use unused saline (salt water) syringes as squirt guns and pelt my brother with them. “Stop it! You’re going to kill me! What is that stuff?!”

“It’s water.”

“Oh.”


—4—

You know that you’ve passed the point of a normal family when going to the ER in the middle of the Super Bowl—which your favorite team is in—isn’t really cause for angst. The Steelers were playing the Packers in Super Bowl 45, and I started to get the lovely feeling of heart arrythmia.

“We have to go to the hospital,” I told my mom during the first quarter.

At halftime, we went. We went to the special area of the ER, doctors buzzing around me, the normal stuff happening. Dad is on his phone checking the score.

“We’re going to lose,” he mutters from the corner.

We did lose. But we got to watch the Puppy Bowl in the ICU!

—5—

Right before my transplant, my doctors were pulling every medical rabbit out of the hat to keep me alive. We were trying every drug we could think of, anything to keep me stable. Forget about improvement, we just didn’t want to get worse.
One of those drugs (another IV med) had to be constituted by us, meaning that it came as a powder, and we had to add the saline. This was rather difficult for some reason, because the force needed to get the saline out of the bottle, into the syringe, and then the saline IN to the med, was quite a bit. WE had jerry rigged some contraption onto the kitchen cabinets to try to give my dad and brother more leverage, because they were the only ones that could do this.

So I came home from work (granted, work was mostly just sitting at my desk—I really couldn’t do a whole lot at this point) and find my brother mixing the 3:00 med dose. I put down my bag

CRASSSSSHHHHH!!!!! SHATTER!!!!!!!!!

I look up. Bryan is holding the syringe, dumbfounded. The glass bottle had exploded all over the floor from the force of the saline trying to go into it.

All I could do was laugh.


—6—

This one has entered family lore:

I had pancreatitis—well, I had pancreatitis a lot. It wasn’t one of those things where I had to get to the ER toute de suite, but I was in a lot of pain.
Dad and I were in the car and stopped at the stoplight at the end of our road. One car was in front of us. We wanted to turn right, but this guy either wanted to go straight or was waiting for an invitation to turn (you know those people).

Dad revs the engine, and jumps the curb. Seriously. Drove the car right over the curb, scraping the bottom of the Accord, a tremendous nails on the blackboard sound.

Now whenever we’re behind someone in that situation, I always tell dad that he can feel free to jump the curb.


—7—

OK this last story is me.

The Resort (my normal hospital) is a teaching hospital. So sometimes when you get admitted from the ER, you have to go through the special hell of having some resident take your history. I don’t know what this resident had done to get me, but whatever. Poor guy.

Anyway, I was tired, I was drugged up, and I really didn’t want to be doing this. Plus, when I’m sick, my hearing goes out the window. I can’t concentrate. So I was just nodded and “yup”ing and all sorts of things to get this guy out of here.

Dad, of course, couldn’t be present for this because you know, I might talk about sex. So he was in the hall with his free coffee.

The medical student asked me a question. I said, yup. He said, how often. I said, oh, twice a day. I mean, I thought he was asking about meds.

He looks at me, shocked. Deer in the headlights.

“I’m sorry, what did you ask me?”

He turns bright red and mutters, “I was asking if you were sexually active.”

OH.

“Well, then, um, nope. Sorry. Never. Wow. Yeah.”


I figure that’s a good way to end, don’t you? :)




On My Soapbox: When people say they want "healthy" kids

Catholicism, CF, essays, health, life issues, transplantEmily DeArdo3 Comments

and some theology

I know that when most people say they want a “healthy baby”, they’re not being rude or mean. They’re probably trying to be nice.

But guys, I wasn’t a “healthy baby.” I looked healthy, initially, but I wasn’t. I had seizures. I had (and still have) thalessemia minor (I think it’s called type b now? Not sure). I got the CF diagnosis when I was 11.

So, should my parents have just pitched me back? “Nah, sorry, we wanted a non-defective model.”

And I know that people do that now. People kill their babies in the name of the kids “avoid suffering” in their lives. Bull crap. “Yes, let’s kill you, so you never get to have a life.”

That ties into part two: saying “God is Good” only when things go the way you want them to go.

Guys. God is good all the time. He is Good. It is in His very nature to be good. But that doesn’t mean that God’s Goodness=what you want.

Because it doesn’t work that way.

God created me with my “defective” genetic code and my blue eyes and my blonde hair and my fair skin and my wonky teeth and an ankle that cracks oddly. I have a really good memory and I love children and I do a pretty good Sebastian the Crab imitation. I have The Phantom of the Opera libretto memorized. (And Les Miz. And Miss Saigon. And Ragtime. And Parade…)

And yeah, I also have CF. I had a transplant. I’ve got scars. And I do talk about it, because it has become clear to me that it has to be talked about, because people see illness as scary and something to be avoided and pain as awful, to the point that Canada is allowing pediatric euthenasia.

God is always good. And God made me the way I am for a purpose. Is it always fun? No. It is not. There are times when I’ve been really peeved about it, to put it mildly.

But at the same time, it has made me who I am, and in general, I like who I am. I wouldn’t want to change that for the world.

God is not being “mean” to me. He created me the way he wants me to be.

And health doesn’t always stay health. Health is a transient thing, guys. Everyone will get sick. Everyone will die. It seems that in our society now we are idolizing life and health to the point that it is fully unhealthy. We’ve forgotten that we will die, that life is fleeting, that our home isn’t here.

Children are a gift from God, no matter how they come.

And God is always good. And He always loves me.

He always loves you, too. No matter what.

As [Jesus] passed by, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither he nor his parents sinned; it is so that the works of God might be made visible through him.”

John 9: 1-3, NABRE

Thirty-six or sixty-six?

health, transplantEmily DeArdoComment
IMG_8187.JPG

AKA: I’m getting too old for this. :-p

So for the last two weeks I’ve been on levaquin, a drug that my docs use to help with any infections I get—sinus infections, lung infections, etc. It’s our first line drug. But it’s not most people’s first line drug, because…they’re normal. :)

Me being me, I already take a fair amount of prophylactic (aka: drugs to keep me from getting sick) antibiotics. Since I’m always on those, when I do get an infection (which last happened during 2016), I have to go for harder core meds. It’s either cipro (which treats anthrax! Yay!), or levaquin.

These are in a class of drugs with a reaaaallly long name, but they have some fun side effects. (sarcasm font!) Cipro messes with my stomach; levaquin messes with my sleep. So when my ENT prescribed levaquin after seeing the start of a sinus infection, I resigned myself to alternating between Zzzquill and Tylenol PM for the next two weeks.

Well, this time, and in the “I’m getting too old for this” category, I’m having issues with my tendons, which is also a side effect of these meds. This is better than joint issues in one area only it isn’t nearly as painful. However, it is annoying because I don’t know how far I can force my body to go without a tendon rupturing (which does NOT sound fun). So far, my left knee, my right elbow, and my right wrist have been the most affected. Essentially, they’re just really sore, and I can’t do much. I can’t knit, which is driving me crazy, and it’s even hard for me to hold books, so I’m reading on my iPad (which thankfully I have). I’m essentially a lump on the couch.

Now, this irritates me to no end, because I do not LIKE being a lump. And I can’t even SLEEP or nap, because of the insomnia side effect. Grrrrrrrrrrrr.

Anyway, getting too old for this. :-P But at least my sinuses are better! And I’m getting to read a lot of Harry Potter.

Med-sanity II

health, CFEmily DeArdoComment
My coffee machine died yesterday. It was speedily replaced, so let’s think about the wonders of coffee and lovely rainbow colored tea tins from David’s! :)

My coffee machine died yesterday. It was speedily replaced, so let’s think about the wonders of coffee and lovely rainbow colored tea tins from David’s! :)

I was supposed to have a procedure done on a skin cancer on my ear today, but that’s not happening. Because….sigh.

A little background. While CF is becoming less of a “childhood” disease and more of an “adult” diseases, adult hospitals have not caught up. I’ve been in several, and what I’ve noticed at 98% of them is that the doctors and staff cannot look at someone “young-ish” and see chronic disease. They think that anyone under 50 must have been perfectly healthy her entire life and thus, can just do whatever they want.

WRONG.

A few examples:

  • You can’t do an MRI on me. Magnet in my head.

  • You can try to put in a PICC line, but it won’t work. My veins are all scarred over from the years of previous PICC lines.

  • You can’t use adult sized needles on me; my veins can’t take them. You need baby sized needles, small child sized needles. I have small child sized veins. And you also have to be good—you can’t just look in the crook of my arm or my hand like you could with a regular adult. I’ve had IVs in my shoulder. I’ve had them in my thumb.

And, what’s pertinent to today’s discussion: I am on many* meds for a variety of conditions. You can’t just prescribe a drug for me without looking at side effects and being aware that they might happen.

This is relevant because, as I wrote in the previous post, when you already have mental health issues, you tend to not like drugs that can make those worse.

So, when I (my mom) called the doctor about the side effects I was having—supreme irritability, mood swings, etc.—the nurse said, well, stop the med and I’ll talk to the doctor.

OK. Done.

We (mom and I) get a call a few hours later when we’re at dinner. The nurse says that 1) the doctor doesn’t think the med is causing the issues, but stop anyway 2) they cancelled my appointment for today and 3) they want me to go to my “PCP” (primary care physician) to have my “mental stability” assessed.

That last point is sort of an insult, frankly.

I’ve been seeing a psychologist since I was 16. I’ve been on a medication for anxiety for that long. My doctors KNOWS this. It’s in my freaking chart, that I take this med. I am not unstable, but yeah, the med you put me on? Made me a littleeeeeee irritable and sort of unhinged. Yeah. But that doesn’t mean I’m going to flip over procedure trays and get into WWE fights in the waiting room. Stop the med and I’ll be fine.

It’s like when I do a steroid bolus. It makes me SUPREMELY cranky and irritable. But I know it’s the meds and the courses are usually short. In this case, the med isn’t even necessary, there are other ways to treat this guy. I’ve had lots and lots and lots of terrible medications in my life that have given awful side effects, but they’re necessary so I suck it up and deal with it. This isn’t necessary.

Second, I don’t have a GP/PCP. I TERRIFY GPs, because I’m complicated. The ones I’ve met are usually afraid to do anything to me because they don’t want to mess things up. So my “GP” is my transplant pulmonology team.

Third, read my freaking chart. Really. It comes back to this all the time with adult hospitals and physicians. “Do you have lung issues?” Seriously, I was asked that question. (Not by this doctor. Another wonderful adventure years ago.)

So a procedure today had to be rescheduled for next month, and I have no idea what we’re doing with the cancerous spot on my arm, except I’m not taking the med anymore to treat it.

Which brings us to the big lesson, here:

I have lived in my body for 36 years. I have a very, very well-tuned—exquisitely well-tuned, I’d say—sense of status within it. I know when “something is not right”, to quote Miss Clavel. And I don’t think I’m exaggerating when I say that that instinct, and my parents’ equally honed instinct, has saved my life on a few ocassions.

Doctors and medical people need to listen to me. I’m not always right. But when I say something is the med, it’s the med. When I say X is happening, and it’s because of Y, it probably is.

It’s basic science. When you do an experiment, and you add a variable, an things go haywire—it’s not because of everything that came before. It’s the variable you just added. That thing has pushed the balance over the edge. Remove that thing—balance restored.

*I am on vastly fewer meds now than before transplant. That being said, I’m still on what the average person would consider “a lot” of meds.


Med-sanity!

health, journalEmily DeArdoComment
Seriously, who would get mad at this guy?

Seriously, who would get mad at this guy?

One of the things I hate about mental health issues is that it’s so easy to freak out when you feel yourself starting to slide. It’s so gradual, that it can be just a few little things, and then suddenly you have a day like I had today, where if the World’s Cutest Corgis came into my yard, I would’ve flown into murderous rage.

Seriously.

I was so unhinged all day, and if I had to pinpoint it, it would’ve started on Sunday, when I go so angry at the Steelers that I was yelling and swearing and generally losing it. But today, when I wanted to bite the head off any human being I encountered, including my super sweet and wonderful boss, I started to think, waaaaait a minute…..

I ran through the regular triggers. I’d been sleeping amazingly. So that wasn’t it.

I had a Diet Coke, and some Earl Grey. If it was a caffeine/sugar issue, that would fix it. No go. (I put milk and sugar into my Earl Grey, for the record.)

I had some dark chocolate in the house and had a piece of “emergency chocolate.” Nope.

Wait a minute…..maybe it’s……the skin cancer med.

I looked up the side effects online, and there it was: mood disorders (anxiety, depression, etc.)

BINGO.

Now, just knowing that I’m not going crazy—literally—is very helpful.

But in the all and all, I’d rather have physical side effects, because then you can take something. Nausea? Vomiting? Phenergan! Pain? We got stuff for that! Can’t sleep! Meds!

This, nothing I can do except ride it out until Halloween when the course is finished.

I’m already on anti-anxiety meds (since I was 16), so….can’t do anything about that, and even if I wasn’t, it can take awhile for the meds to build up in the system, so it wouldn’t really help, most likely.

So, while the med is just a cream, apparently it’s tres potent, and after not even a week….oh well.

I can hang in there. It’s just nice to know I wasn’t entirely losing my mind. But I think I might hide in my hobbit hole for a few days so I don’t take the head off anyone who doesn’t use their turn signal. :-p

More skin cancers!

health, transplantEmily DeArdo2 Comments

As I’ve written about before, I’m really susceptible to skin cancer. Not just because I’m fair, but because of the meds I’m on. The anti-rejection meds I take make me 10 times more likely than the general population to get skin cancer. So even though I am vigilant about sunscreen, and always have been, now I have to be even more vigilant.

Unfortunately, I can’t stop taking the meds. And I can’t—or won’t—live in a burqa. So, that means that no matter how vigilant I am, I’m going to get more. Most likely. But, upped prevention also works; when I swim, I cover my hair with one of these, and so far, my scalp hasn’t had any issues again. (Make sure you find the one with SPF in the fabric!)

It’s cute, right? Right? :-p

It’s cute, right? Right? :-p

The two I have at the moment are, thankfully, easy to treat. One of them is on my tricep, and it’s superficial, so we’re treating it with a special cream. It’s twice a day, for twenty one days, so it’s not a bad course, especially not compared to the IV courses I’ve done that are that long (or longer). I don’t have an IV in, and I’m free to bathe when I want. :) So this is cake.

The second one is on my right ear, on the top curve. FORTUNATELY this is also pretty superficial, so we’re just going to scrape it and laser it off. This is easy, but it does require a lot of waiting room time, because you have to wait three hours between scrape and laser. So, that means books to read!

But enough about me—let’s talk about you. Please, if you haven’t, go to a dermatologist and get a full body check. If you’re a normal person you probably only need to do this yearly. But please do it. The grandfather of a dear friend has skin cancer and it’s metastasized. Skin cancer kills people.

Wear sunscreen. Cover up. Get your skin checked. For the love of God, do not lay out! It’s terrible for your skin, and your vanity. ;-) You want to look younger longer? Don’t tan.

So, that’s this week’s medical adventure.



"Even crazy people like to be asked"

essays, health, hearing lossEmily DeArdo1 Comment

Another thing that’s connected to depression is hearing loss.

Yup. Not making that up.

A study by the National Institute on Deafness and Other Communication Disorders (NIDCD) shows that more than 11 percent of those with hearing loss also had depression, as opposed to only 5 percent in the general population. Depression was most prevalent in those between the ages of 18 and 69.

“We found a significant association between hearing impairment and moderate to severe depression," said Dr. Chuan-Ming Li, a researcher at NIDCD and the author of the study. The study does not confirm the nature of the cause-and-effect of the connection.

 And this is very true. If people don’t include you in conversation, if they ignore your needs, then that is very frustrating and adds to depression, because you feel worthless and ignored. It doesn’t matter if people are really ignoring you or not--it’s the perception that’s important here. Depression isn’t logical.

 So if you have friends and family members who are hard or hearing or Deaf, please include them. Please ensure that they get what they need and help them with conversations. We’re not being difficult, really. We just want to know what’s going on! It’s exceedingly frustrating.

Imagine that you’re sitting at a table full of people--friends, family--and everyone is talking and happy around you. Now, imagine that, instead of hearing what they’re saying, you hear Charlie Brown’s teacher’s voice. Or screeching cats. That’s what it’s like. It’s noise.

Now imagine if you ask people what’s being discussed and people ignore your request for information. How would you feel?

You would feel very frustrated and very small. At least that’s how I feel.

Chronic illness, in general, has links to depression.

“Current research suggests that he relationship between depression and other medical illness is bidirectional. Depression increases a person’s risk for developing of number of medical illnesses and also worsens the prognosis of those medical illnesses; medical illnesses put a patient at higher risk of developing depression.” (The Catholic Guide to Depression, page 29)

So, if you have a friend or family member with chronic illnesses and depression, it is really helpful to include them--to be inclusive--but it’s a fine line when it comes to helping.

The person has to be open to wanting help, yours or someone else’s. Check ins, for me, are appreciated--ensuring that I’m taking care of myself as well as I can (getting enough food and sleep), reminding me to clear the decks if at all possible. Listening can be very useful. There really isn’t much that can be said in regards to things family and friends can do, which is frustrating, I know. Essentially, being there, checking in, and ensuring inclusion are always helpful. (For me. That doesn't mean that I won't get irritated--like, what, do they think I'm five and I can't handle things myself? But I know your intentions are good!) There are things people can do--bringing food, or helping with chores. I'm single, which means that it's easy for me to get alone time, but it also means that I am responsible for everything in my house. I don't have a spouse who can help me take care of the day to day things that still happen when you're sick or otherwise out of commission. 

There’s a scene in the movie The Hours which sums up the concept of asking beautifully. Virginia Woolf, having been sent to “the country” for her health (Virginia struggled with many mental illnesses), is sitting with her sister, Vanessa, in the garden of Asham House, Virginia’s home. Vanessa is talking about a party she had, to which Virginia had not been invited, and Virginia has asked why she wasn't invited. 

“Are you not forbidden to come? Do the doctors not forbid it?” Vanessa asks.

Virginia looks at her sister for a moment. “Even crazy people like to be asked.”

virginia and vanessa.jpg

 


 

The Big Bad Wolf

CF, essays, health, transplantEmily DeArdo2 Comments

I’ve had depression and anxiety issues since I was 15 years old.

Maybe I was born with them and just never really had an episode until I was 15, and I had a TB diagnosis that came really late and almost killed me. “This is just what CF is,” said a doctor in my CF clinic. But when I started coughing up blood, my regular doctor decided to look a little deeper, and she found I had non-infectious TB, something that only 4% of the CF population ever gets.

So it was a brush with death that hit a little close to home. TB is called “consumption” for a reason. It consumes you. The meds made my stomach hurt so much that eating made me cry. I cried thinking about eating ice cream. Who cries about eating ice cream?

The TB seemed to awaken this depression and anxiety in me. I became afraid of the dark. I had no energy, no interest in anything. It was the only marking period in my high school career where I didn’t make the honor roll (and you needed a 3.0 to make the “basic” honor roll). I stopped voice lessons.

I don’t know if many of my friends noticed, but it took awhile to get over the feeling of intense worry and doom (and that’s not too strong a word) that hung over me. As spring and summer came, I slowly got better, both physically and mentally.

Of course as my body recovered, that helped my mental health recover too. The two are linked. But what also helped was my fabulous doctor discerning that I probably needed some additional help, in the form of both a psychologist and medication.

She approached it very gently and made it clear that it wasn’t a mandate, it wasn’t that something was “wrong” with me or that I was “crazy.” She thought that it would be the best way to keep me healthy going forward, and she was right.

I’ve seen my therapist regularly ever since--that’s more than twenty years now, with the same woman. She’s not allowed to retire, ever, basically.

But I’ve also taken medication. It’s changed, over the years, because of drug interactions. But I need it--I can’t go off it, or I get a little unhinged.

I should probably describe what “unhinged” means for me. It means that I start worrying about everything. I feel like I’m a burden to everyone, that nothing is going to go right, that my body is my enemy. I have trouble breathing and have a lot of chest pain. Now, as I say that, I can differentiate between the Big Bad Wolf of anxiety/depression as opposed to the chest pain and troubling breathing of a pneumonia or lung infection. They are different, and I can tell said difference. Some of that is just being older and learning how my body reacts, and what else is going on.

If it’s emotional, then I’ll be very withdrawn. I won’t want to go out. Everything will be much harder than it should be. I will be cranky and cry at the drop of a hat.  I won’t want to leave my house, get dressed, or do anything other than sit on the couch. I won’t even want to read.

It’s not good for me to be in my head that much.

And the other thing I’ve noticed is that most people get seasonal depression in November/December. For me, it’s right now--it’s June/July. This time of year is not a good time of year for me. Maybe because I’ve had a lot of home IV bouts, hospital stays, and work stress in early summer. Last summer I noticed this for the first time….I really don’t like June and the beginning of July. But after the beginning of July, around my transplant anniversary, things start to lift.

I don’t know if it’s PTSD or what. I hate to think it is PTSD because I honestly don’t think of my life as traumatic. But whatever it is...I know it now.

So I’ve talked to my doctors and we’re upping my medication dose for a little while, until I get over this patch. It’s helping already--so that was fast.

I don’t react well to lots of stress, either--so when you combine stressful events PLUS this time of year, it’s really not great.

And part of it is I need to be less nice. I need to stop worrying about making everyone else happy and worry about making myself happy, or, at the very least, healthy. That’s gotten me into trouble before, the idea that I have to do everything even when my body says no. I have to stop letting other people’s expectations dictate what I do--and that’s a lot easier said than done.

I hate to let people down. But at the same time, if I was honest with people, then I bet they wouldn’t want me to run myself into the ground and into the black hole for them, because there’s nothing I do that’s really that important. Let’s be honest. I’m not running the world here.

That’s one thing I want to say to people who struggle like I do: life is not an emergency. (Thanks, Ann Voskamp.)

You are not running the world.

If you have to take a day off, you can do it.

But you have to be vulnerable and tell people that.

And that is hard.

I know it’s hard.

I’ve wanted to write this for awhile, but I’ve been afraid of what people would think or say or how they’d view me.

But you know, we need to be honest, guys.

We need to bring this stuff out into the open.

There are not enough people talking about depression and anxiety and how we just deal with it every day.

We talk about cancer and everything else, and I talk about my transplant.

But sometimes we need to talk about this stuff as well.

Because it happens to everyone--those with faith, and those without. Single and married. Poor and rich. Every color, every race, male and female.

So, here we are.

I’m writing about it.

And I hope that this helps someone, even marginally.

I look really happy most of the time. But that doesn’t mean I am happy.

Sometimes it’s all too much and I need a break, but there’s a difference between a break that I call for rationally, and a break that is imposed because my mind is going five million miles an hour and I just need to clear the decks.

In fact, that’s a good description of what my medication does. It helps me clear the decks and be rational and logical and awesome.

I think I’m going to write a few posts about this. This one is a good starter, a good ice-breaker.

The take away is this: Get help. Ask for help. Be honest and vulnerable, and you’ll be surprised at how people will support you. (If they won’t support you, then you don’t need them in your life. Full stop.)

For me, this was the hardest part. Being vulnerable is NOT something at which I am good.

But it’s worth it.

Out, damn'd spot!

healthEmily DeArdoComment
It's not lovely, but it's still attached....

It's not lovely, but it's still attached....

So last week, when I wrote about delaying a Mohs surgery? 

Sigh. That won't be happening.

In case you're new here--When you are immunosuppressed, you have a 10x higher chance of getting skin cancer than the rest of the population. Last year, I had a few Mohs surgeries to remove some squamous cell carcinomas, one of which involved my scalp and plastic surgery to fix it (I forget the technical name at the moment--something about scalp rotation). 

This year, when I went in for my skin check, my dermatologist biopsied a spot on my right hand. 

The thing you need to know about my right hand is that my right hand is my burned hand.* It's the hand with the skin graft (as you can see in the above photo). Grafted skin is very sensitive skin. It hurts if I just bang it against something much more than my normal left hand. Something just moving across it with a little pressure can tear the skin. And it's my right hand, which is my dominant hand. So you can see--problems here. So I wasn't keen on having the skin cut up for something that didn't need to be done. 

Well, turns out it does need to be done. Sigh. The cells aren't melanoma, but they will be eventually. They're really close, actually. So, out damn'd spot. 

The spot is small, so it shouldn't be too bad. It shouldn't affect how my hand works, but I can't get it wet for four days post-op. (Mohs surgery really isn't surgery, proper. You're awake for it. No IVs are involved, no anesthesia other than the local that the skin gets. In this case, we're using a topical one that will numb the skin up well before we go in with the needle, because this skin is so sensitive to anything.) 

So, as much as I didn't want to do this, I don't have a choice, and my logical Spock side won out. There will be some Valium involved, because I want to make sure I can keep my hand still and not overly freak out. I have a high pain tolerance, but there's just something about hands--and also, this hand hasn't had anything medical done to it since the skin graft 12+ years ago. So, it's out of practice! 

I will also reaffirm all my sun protection things that I said last year: Don't tan! Do not "lay out"! Wear sunscreen! Wear hats! Get swimwear with sun protection (UPF) in it, like these! (I love the Pacifica series. I wear them all the time. With two of them, I can rotate wearing one and letting one dry when I go on vacation. And also, you don't have to worry about the top falling down or kids grabbing you and exposing something that the whole pool shouldn't be seeing! They are crazy comfortable!)

So, next week, more bad cells gone. Out, damn'd spot! 

 

*The burn happened during transplant surgery; an IV infiltrated--basically it skewed out of the vein and into the skin. But the med that was going through the IV (calcium, I think) kept infusing--into my skin. Yeah. That's not good. So when I woke up in the CTICU, my right arm was heavily bandaged, and I was really confused because why was my arm bandaged??...but anyway, calcium burns. There was a question about whether or not I'd lose my hand and lower arm, but fortunately, that did not happen. It's not pretty, and I'll still get somewhat invasive questions about it from time to time, but I'm just glad my hand and arm are still attached!

Medicine Is Good

essays, healthEmily DeArdoComment

It seems baffling that I have to write this, but here we go.... :) 

Medicine is good. 
Doctors are good. 

There are too many people out there who are willing to lure people into the trap of "medicine is a scam, you don't need medicine, you need holistic, natural, chemical and toxin free things and then you will be SO HEALTHY! We can eliminate disease! We can get rid of drugs! Yayyy!" 

Guys. 

No. 

OK, first off--everything is a chemical. Water is made of chemicals. Chemicals are not bad. You are made up of chemicals! 

Are some doctors way too quick on the trigger to prescribe meds that people may or may not need, for conditions that may or may not need treated? Sure. We see this all the time with high cholesterol meds. Our bodies need cholesterol. Cholesterol drugs can cause a lot of harm to the body, especially to women, who were not studied when these drugs were tested.

For example, I have high triglycerides. I always have. My grandmother has them. My mom has them. We do not have any heart disease, or history of it, amongst the women in our family. When I was prescribed Lipitor after my transplant, I took it--and then my body rebelled. I had incredible joint and muscle pain. There were days I could barely move. All I wanted to do was sleep. Turns out, statins can cause lots of damage to joints and muscles. So I told my doctors, we can either have me take a drug that's not doing anything, or you can have me moving and productive. You cannot have both. 

You have to know yourself, and your history, and the risks of medication. What is high blood pressure--I mean, numerically, what is it? It's changed lately. Why? What's the rationale for that? Does it really need to be treated with a pill? Maybe, maybe not. It depends. 

But let's stop saying that we can rid the world of disease "if only" people would eliminate toxins, stress, chemicals, etc., etc., etc. That's not plausible. There are certainly ways to reduce stress and toxins. But eliminate them? I don't think so. 

I remember Mike Huckabee saying that if people just ate right and exercise, we could get rid of disease. 

Guys, that's not true. 

Drug companies make drugs that save lives. Doctors are awesome. Without drug companies, I'm dead, and so are a lot of other people. (And yes, they also make drugs that make life more pleasant, in general. Not everything a drug company produces is life-saving. I know that. :) But the popular drugs are what fund the R&D for the not so popular ones, like the immunosuppressants I take, or CF meds, etc.) 

There is no way I could cure my CF by living "holistically." It's not possible. Sometimes, you need meds, and you need things taken out of your body. Sometimes, we need modern medicine, which, on the whole, is a great thing

Sure, you can try taken gluten out of your diet, or yoga. I love my yoga. I do eat less gluten than I used to. But there are some things that require medication, and that's not a bad thing. Drugs are not bad. They shouldn't be vilified. They are a tool to be used when they need to be used. (This is especially true in the case of anxiety and depression. Guys. If you are anxious or depressed, and you're doing other things already, then adding a drug to the mix might be very, very helpful. Do not feel ashamed! Seriously. Do not.) 

So let's use meds, when we need to. Let's stop saying that, "oh, my cancer went away and I didn't do chemo. So, you know. " There's an implication in these statements that medicine is somehow the weaker option, the easier option, the lemming option. 

Look, if you have cancer and it "went away" with diet and exercise, OK, great for you. Fine. But that's not something most people should do, OK? Most people need chemo or radiation or surgery, or all three. They just do. That's the first-line treatment for a reason

If you want to watch and wait on treatment, again, as long as you're doing it prudently, great. ** But I roll my eyes whenever I see people say that some magical thing is going to save the the world and cure everything. It's a modern version of selling snake oil.

If you have serious medical issues, then you need medical care. You can certainly use complementary therapies. They are useful and, often, helpful! Medical massage is a wonderful thing. Mindfulness practices, body scans, TENS units, even hypnotism--other therapies are great (Music therapy, art therapy, etc., etc.). I will diffuse lavender oil if I'm really stressed out, and I drink valerian tea every night before bed. Ginger tea is great for nausea, and peppermint tea can help with headaches. There are things that are good about the natural world and we need to use those too. When I was really nauseated post-transplant, the pharmacist suggested gingersnaps, instead of anti-emetics (although we did use those, too.), because ginger helps settle the stomach (as does garlic, coincidentally).  It's good to know and use these things.

Combine approaches. Neither side is totally good or totally bad. There are bad parts of the medical establishment. I've met them. I know they exist. And I try to help you avoid them at all costs! :)  But I roll my eyes and get angry when I see people refusing to use the gift of modern medicine, of antibiotics, of vaccines, of treatments, because they think it's impure or dangerous or not needed or whatever. 

Do what you can to reduce stress and get good sleep. Eat well. We should all eat less sugar. Move a little. You know--the basics. But then, if you're doing these things, and you still have problems or symptoms--go forth and get help. It's OK! Run it by your doctor. 

As William F. Buckley said, "Be open-minded, but not so open-minded that your brain falls out." 

 

**Just to be totally honest: I'm going to my dermatologist today. She was worried about a large freckle on my right hand at my last visit and biopsied it. It came back as non-cancerous but as weird. Now, under normal circumstances, I'd probably be OK with what she wants to do, which is Mohs surgery to remove the weird cells. But my right hand is my burned hand. I do not want to mess with this hand unless I absolutely must. First off, it's my dominant hand. I don't want to risk damaging it or even losing it. Second--and again, being honest--when you mess with burned or grafted skin, it hurts. A lot. Just banging it on something hurts. I have a high pain threshold, but i don't think I can hold my hand still while it's cut in to multiple times on very sensitive skin. 

So, I'm going to say that I don't want to do anything right now. I just want to watch the spot, and if I see any changes, I will report them immediately. I have talked about this with my parents (My Medical Council), and my transplant nurses. They are all OK with this approach. So it is prudent, for me. So, I am taking my own advice here. :) 

 

Goal Setting 2018: April results and May goals

Barton Cottage Crafts, behind the scenes, current projects, goal setting, health, knitting, memoir, writingEmily DeArdo2 Comments
IMG_7001.JPG

It's MAYYYY! Yay! 

So it's time to revisit my goals! Let's get started. 

Goal Number 1: 

Work through Dave Ramsey's Baby Steps for Financial Peace to cultivate good stewardship, gratitude, and contentment.

April goal: Start the debt snowball; this is baby step 2, where all your debts are paid off. Fortunately I don't have much to do here! 

Status: Started! Yay!!

May goal: Continue working the snowball. 

 

Goal Number 2: 

Find an agent for my manuscript

April goal: Write a darn proposal!

Status: DONE!  I sent it to a friend of mine to read/peruse, so now I'm just waiting for her feedback. Once I get that, I can make any changes and send it out!

May goal: Send it (hopefully!) 

Goal Number 3:

To deepen and strengthen my relationship with God, because He is the center and the well-spring.

April goals: Confession/Holy hour/Weekday Mass once a week

Status: Confession, check! Holy hour, check! Weekday Mass....no check. Sigh. Something still to work on!

May goals: Confession, Holy Hour, and at LEAST ONE WEEKDAY MASS. Just one. :) 

Goal Number 4: 

Continue to lose weight and treat my body well so I can do everything else I want to do, and honor my body which God made.

April goals: Focus on healthy snacks and regular workouts. 

Status: Did really well here. Lost some weight (yay!), have found new healthy snacks, and I'm still doing yoga classes regularly. I've also continued to make progress on body measurements. I take my measurements on the first of every month, and this is where I can really see progress, or not. So I'm glad to see progress being made!

May goals: Consistent working out--yoga classes; continue to focus on health snacks. 

Goal Number 5: 

Grow Barton Cottage Crafts, to help with baby steps (goal 1), but also to have a creative outlet and for enjoyment. 

April goal: Finis commissions and get new ones.

Status: I did finish my commissions, and I'm working on getting new ones. Part of that is the new Barton Cottage Crafts page here on the site! I'm really proud of it! So in May, while I wait for commissions, I'm going to be working on new projects, as well as starting to plan knitting projects for birthdays and Christmas--because guys, handmade takes time. So if you want birthday presents/Christmas presents, you have to get them early. As in, now is not too early!

May goals: See above. :) 

Goal Number 6: 

Have a beautiful, peaceful, welcoming home so I can appreciate what I have, encourage hospitality, and cultivate peace.

April goal: Get another KALLAX unit for the living room. 

Status: The one I want isn't in stock--and wasn't for ALL OF APRIL. Grr, IKEA. Grrrrr. So I'm waiting for that. In the mean time, working on keeping spaces clear. I did do a lot better in having people over in April--I would say come on over, knowing the house would be presentable. So that's great. 

May goal: Pray that the KALLAX comes back in stock? :) If it does, that'll happen. If not--continue weekly clean/focus on certain areas (FlyLady zones, if you're familiar with those), and keep inviting people over. And continue contentment challenge--that fell off in April, so I'm doing month three now!

Goal Number 7: 

To nurture my creativity so I can learn new things, inspire myself, stretch my mind, and feed my soul. 

April goals: Knit two new Quince projects, start reading Artist's Way, get new commissions. 

Status: I knit the projects! Yay! And I have big plans for more new ones....I didn't read Artist's Way, but that is definitely on the list for this month. Commission--see above.

May goals: Start new knitting project; start reading Artist's Way. (I have to DECIDE on new project. I think it's going to be a tricolor cowl, but that means getting yarn, or a cowl with a textured stitch, in order to really "get" working in the round done.) 

This month, my brother is getting married--NEXT WEEK, holy cow!--so I didn't go hog wild on my goals. My daily goals are balancing my checkbook (yes, old school!), lectio, knitting, and working out 5/7 days a week. So they are important goals, but it's not a ton, so I can really focus. I didn't want to stress this month. I want to celebrate and enjoy this big moment for our family! :) 

 

Sound and Silence Part IV: Accommodations

hearing loss, healthEmily DeArdoComment

Last Saturday was World Hearing Day, so I showed a few shots of my Bionic Ear on instagram. Some people were shocked to see I had one! So I decided it was time to do a little updated series here about why I have one, how I got it, how I like it, and what life is like with one. Here are the previous parts: Part 1, Part 2, Part 3

This is the meat and potatoes post. 

First, let's acknowledge that deaf and hard-of-hearing people are often not accommodated. Curb cuts are put in at corners, even when there are no sidewalks. Braille on signs is ubiquitous. (although I know blind people often need things they don't get--like audible crossing alerts!) But captioning has to be fought for. The ADA doesn't require TV stations to caption things unless they get federal funding, for example. 

So the first thing people like me need to do is ASK. And that's hard, I know. But we need to be more comfortable about saying, I'm sorry, I'm hearing impaired. I need accommodation. If we're not asking, we're definitely not going to get! 

With that in mind, knowing what we know now, how can we, as individuals and society, accommodate or adapt what we do for people with hearing loss? 

Here are a few suggestions. Some are for people, some are for institutions. 

1. Be patient. I talked about this in the last installment, but please repeat yourself if you're asked to. Don't get angry. Also, you don't necessarily need to talk louder. Sometimes you need to be clearer. As in, speak slower, enunciate, look at me. Don't hide your mouth! It doesn't necessarily have to be over the top. It might take some adjusting. But please be patient. 

2. Provide alternate means of contact. If you run a church or volunteer organization, for example, don't just provide a phone number. Provide an email address. If you just provide a phone number, I can't contact you, and then I can't help out. Say if texting is acceptable, too! (This last tip is for older people, who might have landlines only. Tell me if it's a cell number. If it is, then I'll try texting.) 

(And a note: I can leave messages on voice mails. That's because I know to leave a message at the beep or when the voice stops. That's different than trying to talk to a person. Does that make sense?) 

3. Provide a chat interface. This is mostly for businesses. If you only provide a phone number, I am screwed. And don't say, "Oh well we have a TTY!" I don't have a TTY.  It's $250-600 for a TTY. Also, TTY use in general is declining as people have email and text. Folks. Come into the 21st century. Provide a chat interface on your website! (It's like how cars had tape players in them well into the early 2000s. Huh? A tape player? What?) Chat interface, the ability to place requests on a website (like AAA!), customer service email, apps....it's a wonderful new world of technology. Use it. Please. Look, if Bobbi Brown Cosmetics, The Disney Store, AAA, and just about every other e-commerce site can provide a chat interface, you can too, government people! 

And do not tell me that it's not secure to do it any way but over the phone! I email my transplant nurses all the time for stuff--we're sending highly "private" health information over email. My bank has chat. I send sensitive financial information over chat! Come on! Don't tell me that the retirement agency or SSDI or whatever can't do the same thing. You can. You're lazy. That's what it comes down to. You. Are. Lazy.  Don't be lazy. 

Let me illustrate what happens when you are lazy, companies and agencies: 

It means that I have to ask my parents to translate the conversation for us. It means that I have to fill out paperwork saying that yes, my parents are decent people and aren't going to lie to you about me. It means that I can't communicate with you on my own. It means that we have to set up times for me and a parent to talk to you, so that we can get something done. This means that my dad has to leave work early, or work from home, or leave for work late, so that he can help me here, or that my mom has to rearrange her day. It is a HUGE inconvenience to everyone. 

If you provide chat interface, then we have none of these problems. It's all easy. And simple. And, dare I say, secure. (My dad is an IT professional. He deals with this stuff all the time. He knows. He can tell you the whole "It's not secure" argument is crap.) 

4. Provide transcripts or closed captioning. If you're doing an online course, please provide captions or a transcript of what you're saying. 

Video is tough. The sound isn't great, a lot of the time. The best way for me to understand someone, in general, is for me to "learn" your voice, and the easiest way to do that is to read captions while you talk. (Obviously, this is not in a real life scenario. :-p In real life, the more I listen to you, the more I learn your voice, your cadences, your vocabulary, and that helps me understand you better.)  But until you get to that point--caption videos, or provide transcripts. 

Also, video companies? Caption ALL THE THINGS. Don't just caption the movie. I like to watch the special features! And it should be illegal to release a video in the U.S. that doesn't have captioning. I mean, come on. TVs do have captioning--most of them. Some older ones don't. But that doesn't mean that they automatically caption videos or TV shows. They do not! 

TV and movie folk: please caption your shows and your channels. Some of you don't. That means I can't watch you. Fix that, please. 

5. Turn the captions on! If you're in charge of a waiting room, please turn the captions on the TV. It is so annoying to hear just mindless sound. Imagine a jackhammer going off around you constantly. That's what it sounds like. Or a baby crying. It's just NOISE. With captions, it's not noise anymore!

grinch noise.jpg

In the same vein: 

Movie theaters: Provide captioning devices. Please. I like the movies too! (Marcus Cinemas does, for every movie. It's a godsend. So thankful they're my local chain!) 

Airports: Provide a messaging board at all gates and in the concourses, so people can see updates. Provide a transcript of the safety talk. Really be aware of your hearing-impaired passengers and make sure they get the information they need. Write it down if you have to! It's no good for me to tell you I'm hearing impaired, and then you look at me like I have lobsters crawling out of my ears. 

6. Put in a telecoil system. This is mostly for churches and other gathering places where people are using microphones. Telecoil systems are great! 

Sign indicating my church has a hearing loop installed. This means I can understand the homilies! Yay! 

Sign indicating my church has a hearing loop installed. This means I can understand the homilies! Yay! 

7. Use microphones There are few things in the world that irritate me more than people who do not use microphones, when a microphone is easily available. Do not do the crappy, "oh, the acoustics are fine." THEY ARE NOT. You are being silly and denying people the ability to hear and understand you. Especially if the place has a telecoil system installed, use the microphones! Otherwise the telecoil system is no good! 

If we're in a place that's echo-y, like a big meeting room or something, and you don't use a microphone, I'm lost. Most people do not know how to project. After a few minutes, I get very irritated and cranky because I have to work so hard to understand you. And if you do this continually I will stop coming to these events, because I will get irritated and angry, and sad, because I cannot hear and understand. And sadly, this seems to happen a lot with church stuff. So....yeah. I might be a leeeeetle annoyed about this. 

Also, face out. Show me your face! If I can see your mouth, that helps. (See the last entry, which talked about lip reading)

If you don't have hearing problems, I want you to imagine being surrounded by a swarm of bees and trying to listen through that. Or being underwater, and trying to hear someone speaking above you. Now imagine that happening for an hour, two hours, three hours....you'll start to get some idea of what it's like to try to hear and understand people in this situation. It's mumblemumblemumblemumble. How long would you want to put up with that? Not long, I'd wager. 

8. In design, think about acoustics. Places where there are metal floors, metal ceilings, metal everything? That's terrible. There is nothing to absorb the sound. It's one big sound magnifier. The ADA requires places to have wheelchair ramps and access*. Do the same thing for the hard of hearing. Think about it. It might not be "trendy", but you'll make me a lot happier. Have some carpet. Have some wood. Have things that absorb sound and don't make it so loud. (in the same vein--braille menus, y'all. Come on. Large print, too!) 

9. Be understanding. It can be hard to have to work at hearing. Because really, it's work. When I've been in a group of people for a long time, I have to work hard to understand people, what's happening around me, etc. So if I say, hey, I gotta go, or I'm going to bed, don't be all "but it's EARLY!" Or whatever. My brain is very, very tired. I probably have a big headache. Just let me go. :) 

10. Inclusion. We talked about this before. But if you're in a group with a hard of hearing person, make sure to include him in the conversation. If I ask you what's being said, please tell me. Don't ignore my request. It makes me angry. I love to talk. If I'm just sitting there, not talking, chances are it's because I have no idea what's happening and no one's cluing me in. This. Is. Sad. Please don't do that. :) That doesn't mean that you have to be all over me every five seconds. But do make an effort to talk to me! Because otherwise, SADNESS!

sadness.jpeg

I think I've covered everything...is there anything else you want to know? Drop it in the combox and I'll answer!

* Doesn't mean they do it well....see my series on the ADA about this. 

Sound and Silence Part III: Living with the CI

hearing loss, healthEmily DeArdoComment

Last Saturday was World Hearing Day, so I showed a few shots of my Bionic Ear on instagram. Some people were shocked to see I had one! So I decided it was time to do a little updated series here about why I have one, how I got it, how I like it, and what life is like with one. You can read the other parts here: Part I, Part II. 

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So let's talk about my day-to-day CI experience (and a little bit about accommodations, at the end, but we'll talk more about that tomorrow.). 

There are times I don't wear my CI: 

  • When I'm sleeping (although I can--it's just not really comfortable. But when I'm in the hospital, I do.) 
  • When I'm swimming * 
  • When I ride certain rides (roller coasters? It comes off. I really don't want to have to look for it later...) 

There are also times when my head just hurts. Keep in mind--there's a magnet in bone. That's going to hurt sometimes. On those days, I have to take the CI off and I'm deaf for most of the day. It's not fun, but it's not terrible. It's inconvenient. 

I do have to keep the hair there cut short, or the magnet has trouble connecting. I don't shave it, but I do cut it reaaaallly close. 

Currently I'm having issues with the magnet. The outside processor doesn't always like to attach correctly so there are times when it will shift and I'll have to move it in place to get it to work again. That's irritating, but it should stop when I get a new processor. 

That's a fun process, by the way, because insurance companies don't like to pay for new processors. The one I currently have will be declared obsolete next year, and then insurance companies will have to pay for an upgrade, because my current one can't be fixed anymore, and there won't be parts made for it anymore. But until then, they won't. Well, they will. We'll just have to fight them on it. (Here's a trick, guys: Never assume that insurance won't pay for something. Don't just pay the bill. ARGUE WITH THEM!)

Why insurance companies do not pay for hearing aids, or CI upgrades, is beyond my understanding. It's so ridiculous. Hearing is just as important as sight, but hearing gets shafted. (Part IV is going to be all about accommodations. So more on that then!) For example, insurance will pay for an entire evaluation and surgery and a processor for my right ear, but they won't pay for an upgrade for my left ear. Which is cheaper? Which is better for everyone? And which will the insurance company pay for? Yeah. sigh. 

Cochlear implants cost about $5,000. Now, the first one is covered. If you have surgery, then the surgery, the implant, the processor--all that's covered. But upgrades aren't. About every five years or so, you can try and I've had luck with insurance paying then. This year is my five year mark for my current processor. So we will either try this year, to get a new one, or try next year, when it's more likely we won't have to argue as much! 

Think about cell phone or computer updates. Every time there's an upgrade, it's better, right? CIs are the same way. The one I have now is much better than my first one. There are not just cosmetic things (i.e., it's smaller) that are "better", but also in terms of power, of programming, of what it can do. So it's not like upgrading to be "cool". It really is a substantial difference, usually. 

The batteries are around $200-250 each. At some point they stop holding a charge and you have to replace them. I currently have three, but one is cracked so I don't use it on a daily basis. It's an emergency battery. The two I have I rotate, so they'll last longer. 

There are other parts, like microphone covers, and ear hooks, and things like that, that have to be paid for. You get some of these things when you upgrade, or get your processor, but often I have to buy more. 

In general, my CI is great. But like I said in the last installment, I can't use the phone. Everyone sounds like Charlie Brown's teacher. (That goes for people like my parents, too. I should know their voices better than any other--and I do--but I can't call them on the phone. That should tell you how terrible my hearing is on the phone.) 

I do rely on lip reading, a little bit. But not many words are lip-readable. I think around 10% of English words are uniquely identifiable in lip reading. Go talk to yourself in front of the mirror and notice how many words look similar. Really, for me, lip reading helps in context. But on an airplane? Forget it. There's way too much noise for me to understand what the flight attendant is saying, even if she's leaning right over me. I can guess that it's time for beverage orders because she'll  have the little pad out. :) Flying is sort of rough, when you're hearing impaired. **

FaceTime is a godsend. That's really the only way I can use the phone. Do I have a cell phone? Yes. :) But I don't use it as a phone, most often. I FaceTime people, and I text. And I did take ASL in high school, just for fun--God prompting, there....

In restaurants, I want to sit against a wall, or in an area where there won't be sound coming from behind me. I'll generally adjust my CI settings, but I try to make as "optimal" an arrangement as possible for me, to help out. If you're walking on my right side and talking to me, I'm not going to hear you as well as I could. 

The other thing about the CI is that there's a little bit of a lag...a few seconds. So sometimes I'll ask someone to repeat something, and then I'll understand what they said, because my brain has caught up. 

Also, please folks--repeat what you said. Don't say you said "nothing." You clearly said something. Don't huff and puff if I ask you to repeat yourself. If you do that, then guess what? I don't ask you anymore. And then things get worse. And then people say, well, why didn't you ask for the person to repeat it? BECAUSE PEOPLE GET ANGRY. So please, do not roll your eyes or sigh or be like, why aren't you listening. I am. Believe me. 

It is very, very, very irritating to be left out of conversations. A lot of the time, especially in large groups, I don't know what's going on if people don't keep me in the loop. So, please do that. Tell me what we're talking about. Include me. Imagine you're at a table with people and everyone is talking around you. It's not fun. It makes you not want to do things! So please include people. 

My CI is much better than my hearing aids ever were. But there are still things I can't do, and there are still accommodations I need to make. It's not magic. It's awesome, and I'm glad I have it. But it's not perfect. I'm underlining that point so people really understand that. 

*There are things I could do to swim with the CI--there's a waterproof cover, for example. I just don't. But I could get one of those. 

**Flight attendants are just part of it. The safety thing? I can't understand that speech at all. Everything the pilot says? No idea. And we won't even TALK about how airports don't always have message boards, so I can miss important announcements about flight gates being changed, etc. If my friend Mary hadn't been with me for our California adventure, I probably would've missed my flight home, because they changed the gate! It is TERRIBLE. Fortunately airports let you take a "support person" back, so I have people wait with me before I board. I can--and have--flown alone. It's just stressful because I have to be on constant alert for any changes. 

 

Sound and Silence Part II: The Cochlear Implant

health, hearing lossEmily DeArdoComment

Last Saturday was World Hearing Day, so I showed a few shots of my Bionic Ear on instagram. Some people were shocked to see I had one! So I decided it was time to do a little updated series here about why I have one, how I got it, how I like it, and what life is like with one. Here's part one. 

So, what the heck is a CI, and how does it work?

CI inside.jpg

I'm going to keep this really basic. I'm not an audiologist and I don't play one on TV.  But this handy chart should help. You see the external bit, but yes, there are things in my head other than my brain. There's the magnet, to hold the processor on, and there's the wire that goes into the cochlea. Remember that the reason my hearing sucks is because my hair cells are dead. The hair cells live in the cochlea. So the wire replaces them, in a sense. The wire has an "array"--I think mine has 24--of sound things. I know that's super technical. I forget the real name. But there are24 different entries on that wire that can be individually fine-tuned. (More about that later) So instead of hundreds of hair cells...I have 24 electrode arrays. Now, it's better than nothing! But I note this to illustrate that CIs are not perfect replacements for real hearing. 

I had my surgery in May of 2008. Post transplant I had a lot to deal with--I had a skin graft surgery that November, and then we had to try hearing aids first, and then I had to get myself to agree to having a CI, and so with all that, it was a long-ish process to actually getting one. 

The one great thing is that I was "post-lingual"--meaning, I knew how to talk. (Boy howdy, can I talk.) If you have had severe hearing loss for a long time, or if you're a baby getting one, then there's hearing therapy involved. Even now, there are sounds I hear and it takes  me a minute to figure out what it is. (While writing this, with my CI on, I heard a crazy loud, scary noise. What is that?! It took me a few seconds, but I figured it out--crows.) Everyone knows the person who is hard of hearing who speaks loudly because she can't hear herself. I can hear myself. I'm just loud. (There are times when I can't hear myself as well--when I have the telecoil on, for example, so in church.) 

My ENT is fabulous. I've had him for years--he works a lot with CF folk, and more and more CF folk are having CIs put in. (ENTs also do all our sinus work. We have a lot of sinus work...I am lucky in that area. My sinuses tend to behave.) If you're in the central Ohio area, Dr. Willett, Ohio ENT is my guy and I adore him.  

So the day of surgery was just like any other surgery. Port accessed. Ready to rock and roll. You stay over night, of course, because people are putting things in your head! My audiologist, who is also at Ohio ENT, actually stimulated the CI during surgery to make sure it "worked" and that it had been put in correctly. That's a key part of the process, because I didn't get to attach the processor for a month, due to healing. You don't want to attach the processor and have it not work! 

For 21-30 days, your head heals. I wore my hearing aids, and waited for activation day. This is the day you see when those videos are posted to Facebook or YouTube where a kid or someone hears for the first time. Mine was not that dramatic. But instantly, small sounds came back--the sound of the turn signal, typing, things like that. 

(When your hearing goes, it's usually the upper registers that go first--high notes, high voices, likes kids and women. And fainter sounds, like turn signals, things beeping, etc.) 

My audiologist then programmed the CI. You can have up to four programs. Again, I don't want to get super technical, but I have all four slots on my CI filled with programs. There's a tiny button on the processor that I hit to cycle through them. The first is my "normal" program. That allows sound in from all sides, and is good all-purpose. The second is focused on who is directly in front of me, and cuts out side noise and background noise to an extent. This is good for  noisy places and restaurants. I have another program that focuses this even more. The fourth program is a richer program that's generally for music, but I can use it as an everyday program, too--you get a wider range of sounds and frequencies. 

There is also the telecoil. This cuts out all sound except what you hear through the telecoil system, which lets in whatever's coming in through a microphone.* This is what I use in church, and it's amazing. It's like someone is speaking distinctly and clearly into my ear. You are also, supposedly, able to use this for the phone. That is not my experience. (More on that later.) Of course the issue with the telecoil is that the other person has to have the microphone on, or the system is useless. (It does work for lecterns, too, or stand microphones.) 

Now, I have one implant. I don't have one in my right ear, because I want that 20% of real hearing that I have. When a CI is implanted, it removes any residual hearing you have left. I am truly deaf in my left ear without it. But I don't wear my CI all the time, so I need some residual hearing. This allows me to hear my alarm clock and other loud noises. There are also times when the batteries will inexplicably die. (This happened a lot with my first processor, not so much with my current one.) The 20% also helps out my CI, in a sense. It gives me some sense of directionality--where a sound is coming from, although not a lot. When I'm swimming, I can hear loud things. If I know your voice REALLY well--meaning, you're my parent or my best friend or my sibling--then I can decipher what you're saying, sometimes, with just my right ear. 

I use rechargeable batteries in my CI. I have three of them, and I rotate them. They get put in and can last about 15-24 hours on a full charge. I tend to not put my implant in early in the morning, because I sort of like the silence. But that's changing as I switch my workout routine to being in the morning. I need to hear the video. 

I'm using "hear" here, but what I really mean is "understand". I can hear lots of things. That doesn't mean I understand them, or process them. For example, I heard the crazy bird sounds this morning, but I had no idea what it was. 

Also--and I'll talk about this more in the next piece--but everyone's CI experience is very different. Rush Limbaugh has a CI, and he said he can't learn new music. I can, because, as we saw, I was very musically inclined and my ears had been trained that way. My brain still knows that language, in a sense. I work hard to learn new music. Instrumental music is difficult because it all sounds like noise, at first. But I can learn new songs and new vocal pieces with the CI--I just have to approach it differently. Some people with a CI can use phone adaptation stuff. I can't. I don't know why. But more on that next. 

*The telecoil can be "mixed"--basically, you can determine how much sound you want to get through the telecoil. Mine is 100%, when it's turned on. But you can do 50/50, 75/25, 90/10....whatever. 

Sound and Silence Part I: How I Lost My Hearing

hearing loss, healthEmily DeArdoComment

Saturday was World Hearing Day, so I showed a few shots of my Bionic Ear on instagram. Some people were shocked to see I had one! So I decided it was time to do a little updated series here about why I have one, how I got it, how I like it, and what life is like with one. 

I was born with normal hearing. 

Actually, I was born with really great hearing. My mom used to get irritated because I'd hear her whispering things to dad in the next room and yell, hey, I want to hear about that! 

As a singer, and a musician, your hearing is important. Obviously. A lot of my voice lessons involved listening. Intervals, pitch-matching, etc; all of that is a huge part of the musical art. 

In college, people started to notice that I wasn't hearing them when they were talking to me. Now, some of that was just that I tend to get really absorbed in things--a book, something I'm writing. But people would call my name, and I wouldn't answer. 

I went to the audiologist at Nationwide Children's, and I did have some hearing loss. Not a lot, and probably not enough for hearing aids to help. But it was showing up on the hearing tests. OK. I just shrugged and went on with my life. 

In between 2003-2005 (pre-transplant), I was on a lot of drugs. Hard core, IV meds, in order to keep me alive and breathing. Some of these were ototoxic--meaning they killed the hair cells in my ears, the hairs that conduct sound to the cochlea. Without these hair cells, you don't hear. 

how hearing works.jpg

(Here's a brief explanation: 

When you are exposed to loud music or noise, it is your hair cells which are damaged. Hearing loss occurs because loud sounds are really just large pressure waves (like when you stand next to a subwoofer and can "feel" the bass). These large pressure waves bend the stereocilia too far, sometimes to the point where they are damaged. This kills the hair cell. Since cochlear hair cells can not grow back, this manifests as a permanent hearing loss.) 

In my case, it wasn't loud noises. It was the medication. Once hair cells are gone, they do not grow back. They are gone forever. 

And the more I used these drugs, the more hair cells died, in both ears. 

By the time of my transplant, my hearing had gotten worse, and we were starting to think about hearing aids. I was fitted with my first pair soon after transplant. Hearing aids are not covered by insurance. I needed the most powerful kind, the behind-the-ear hearing aids, and they were fit to my ear shape. 

They were also a pain in the butt. 

Hearing aids just magnify sound. It's like turning up the volume on everything. But it's everything. It's not discriminate. Things like pages turning were incredibly loud. In a crowded room, I couldn't focus on one sound. Everything came in, all the time. 

The other problem is that hearing aids break. The outer ear part would separate from the part that went in my ear. I was constantly trying to put them back together with tape! 

In 2007-2008, I got sick again--and more ototoxic meds. Now the hearing aids weren't really helping at all. It was time to think about cochlear implants. 

I didn't like this idea. One, I didn't like the idea of a magnet in my head. I didn't like that it would take any residual hearing away from the ear that had the CI. I didn't like the idea of surgery and weirdness. 

But eventually it got to the point where it hurt to hear. The organ at church was painful. Listening to people was awful. I didn't like to go to crowded places. I couldn't go to the movies, and I love the movies. 

That's when we decided it was time for a CI. 

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A cochlear implant is vastly different than a hearing aid. A hearing aid, as I said above, just amplifies sound. A CI helps my brain decipher and understand the sound. It directly stimulates the auditory nerve, so they bypass all my damaged equipment and go right to the source. 

I had to have some tests done: you can't have a CI unless you have a certain amount of hearing loss. You need to have moderate to profound loss to qualify for it. Insurance does pay for a CI and the surgery.* I had a CT scan and MRI** on my head, to make sure they could implant the magnet, as well as  more hearing tests, to determine the extent of my hearing loss, and also, which ear would receive the implant (I didn't get bilateral CIs. More on that next.). My right ear has slightly more hearing than the left, so the left ear was the "winner", and has the CI. 

Surgery was scheduled for May of 2008. 

In the next installment, I'll talk about surgery, recovery, and how the CI works. 

More about insurance coverage in the upcoming installments. 

**Last MRI ever, because, with a magnet in my head, they're contraindicated from here on out. Yay! 

 

 

 

No, Emergency Rooms aren't "first come, first served"

healthEmily DeArdoComment
emergency.jpg

Time for stories, boys and girls!

Or, really, let me 'splain something to you: How Emergency Rooms Work. 

Emergency rooms are not first come, first served. 

Some people need to be told this. So I'm telling you!

Emergency rooms work on a triage system--meaning, true emergencies go before "emergencies that can wait."

Let me illustrate this. 

If I--a double-lung transplant patient--come into an ER talking about chest pain, irregular heartbeat, fever...
I will get taken back immediately. I will not wait. I will not sit in the waiting room. I will go back and be evaluated post-haste. 

This is because Very Bad Bad Things Could Happen to Me Very Quickly. I could have a pulmonary embolism (PE). I could be having an acute episode of rejection. Many, many things could be going wrong that need fixed tout de suite. 

So, I will never wait. 

Really. 

But to get to that exalted "I will never wait" point, I have to have a long, long history. 

Now, you in the waiting room--you have brought your kid who is sick. Might have a slight fever. Might have a broken arm. Might have an ear ache, or just feel funny, or be vomiting. Most of those things are not emergencies. (Unless it's a greenstick fracture.) These are things that can wait. So yes, you will see people get taken back before you that don't "look" sick. That doesn't mean they are not. 

If you are in a room in an ER/ED, and you are waiting, I want you to think for a second. You have no idea what is going on in the rest of the department. You don't know if five ambulances just came in with critical patients. You don't know if there are lots of complex cases being dealt with. You have no idea. 

Now, if your kid is getting worse, certainly tell the nurses/staff. But remember, there is worse, and then there is "I'm impatient and I want to go home."

Keep in mind that if your kid is healthy enough to wait, you are lucky

I have been the kid that the entire ER has been working on--or what seemed like the entire ER. It is not fun. If your kid--or you!--are cranky or tired and want to go home, be glad that you are in that position. Because it means that death is not an immediate possibility. 

I have also been the person who's been in the ER, been cleared, and then waited. I know waiting is not fun. But also, it means, I'm not going to die today! Yay! I'm OK enough to go home! Because how many times has that not been the case for me? A lot

So if you are in the ER, and you are tempted to complain because you've been there for six hours, or because the kid in the next room "doesn't look sick", please do not do those things. Please be quiet. And realize that your kid is probably going to be OK. But you have no idea what is going on in the other cubicles and emergency treatment rooms. 

 

(And also: EDs are not your doctor's office. If you think there is a problem, try an urgent care first. Here is a handy link! ) 

 

 

Invisible Disabilities and the Workforce

CF, health, hearing loss, politics, essaysEmily DeArdoComment
Fun medical equipment from the 1980s....

Fun medical equipment from the 1980s....

Take a look at the picture of me on the sidebar. (If you're reading this in email, click through.) 

What do you see?

I'm not asking for an assessment of my physical attractiveness, or lack thereof. But if you just looked at that picture,  you would think, yes. She looks like a pretty typical 30ish woman.

This is what you'd be missing: 

*You can't see my cochlear implant, tucked behind my left ear. I don't wear any hearing devices in my right ear, and there's only about 20% natural hearing left there. 

*The scar on my forehead? You can see that, but you probably don't know it's from a skin cancer removal. You also can't see the bald patch on the back of my head, from another one. Skin cancer is 10x more common in post-transplant people, because of our immunosuppression. It's not because I'm fair. (And I'm religious about sun protection, anyway). 

*You can't see that I've got about 52% lung function--which for me is good. That's great! But for normal people, if it's lower than 70%, there's probably an issue. For me, 70% is a dream I will never see again, after hitting it in 1997. So imagine working without one lung. That's me all the time--and that's GREAT. I LOVE IT! 

*You can't see the burn on my right arm, which is left over from transplant surgery. Third degree burn. Skin graft. It's rendered my right arm usable--thank God I still have it!--but it doesn't have complete function like it used to. (Knitting probably helps, though, in making it stronger.) The skin is very, very delicate. It tears easily. So I can't do a lot of manual labor with this arm--and this is my dominant arm. If you were looking at me, you'd notice, but you wouldn't have all that information. 

*Oh, and I'm anemic. I always have been. Part of the paleness. :) But that affects my stamina, too. I'm used to it, now, but there are times when I need red meat and sleep--Moreso than the average bear.

 

I'm telling you all this because invisible disabilities have been in the news lately, as a part of the new Medicaid standards the administration is considering. I look pretty "able bodied", but I'm not--as any physical exam would show. I can't use a telephone--I use FaceTime, but not a real phone. If you call me, I can't understand you. You will sound like Charlie Brown's teacher. Being immunocompromised means if I get sick, there could be a hospital stay in my future. You get the flu, you stay home. I get the flu, I can end up in the hospital. I need to be more circumspect about where I go, especially during flu season. And honestly, I need to take care of my body. That means giving it enough sleep, among other things.  

So, looking at me, you can't see these issues. But they're there. And when you compare me to an average 35 year old woman, it becomes apparent. Invisible disabilities are real. Ask anyone who has arthritis, for example. Or diabetes. Or epilepsy (which I had as a kid). They're not to be taken lightly. Just because someone looks able-bodied, doesn't mean she is able-bodied. 

As a society, we need to be cognizant of that. I'm not making policy suggestions, here, but we need to be aware that there are serious disabilities that people cannot see, and that can impact ability to work. For example, I look fine. But you don't want me to be your receptionist, or ask me to carry heavy things or fix machinery on a regular (or even semi-regular) basis. And of course, I see many more doctors than average people. I see my transplant doctor every four months--I see my ENT every four months. I see my dermatologist very frequently, and I have days where I'm out having Mohs surgery, or having things removed--that takes time. I can have surgeries scheduled at the drop of a hat. Any employers who hires me needs to be aware of those things, and needs to be flexible about them. If they're not, then I'm in trouble. And my employer won't be happy, no matter how great my work is, or how intelligent I am. Without that understanding and flexibility, a job will be hard for both of us. 

I want to provide this as food for thought, when you read about invisible disabilities, or work requirements. It's not wanting to work--it's things that make working difficult, for both employer and employee. 

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Having said that, though, I don't think a person with a disability or a chronic illness should automatically go the SSDI/Medicaid route. Here's why. 

I think that being "normal", as much as you can, is good for self-image, self-esteem, and general mental health. I know that one of my biggest drivers growing up was that I was not going to be babied. I was going to be normal. That meant, doing my homework. Going to school. Taking exams. Etc. If I needed accommodation, I asked for it, but it was low-key. I finished high school. I went to college. And after college, I got a job. 

I knew that I would need a job with good insurance. So yes, if you have medical issues, that means you have to consider jobs with good benefits. It doesn't mean you can go off and join a non-profit that doesn't provide good medical coverage, OK? You have to be reasonable and logical. I wrote more about this here

I do not think it is a good idea for people with CF to sit around at home and bewail their state. First off, that would have driven me insane. Really. When I had to be home for four months post-transplant, after about month three, I was going stir-crazy. I have to have things to do. 

But--there comes a time, when yes, you can't work anymore. This happened with my friend Sage. When she was listed for transplant, she had to leave her job and apply for SSDI. That does happen. It's part of life. But I don't think--and we talked about this often, so I know we agreed here--that she wouldn't wanted to sit at home, either. 

Maybe you do. OK. But my feeling is, if you can contribute, contribute. BUT that requires having an employer that is flexible and that is willing to work with you. And I had that--until I didn't. Once that goes away, then life can get very difficult, and then it might be time for SSDI/Medicaid/whatever. If that time comes, then go for it. That's when people on the government side need to realize that we might look pretty able-bodied. But we're not. 

And also, when it comes to the Medicaid/SSDI system, a lot of the time, they're not talking disability like I have a disability. They're talking about worker's comp sort of stuff. Like, back problems. Problems with limbs, or standing for eight hours, and movement. The system isn't really designed for people who have chronic issues that aren't movement/skeletally based.  That is frustrating, because what I have is what I have. I'm never going to get my hearing back. My lung function may go a little higher, but this is pretty much as good as it gets. I'm never going to get better skin on my skin graft. So the government side of this needs to realize that some disabilities don't get better. They might stay stable--or they might radically get worse--but "better" is not going to happen.  

I know that before I had to deal with all this, I had no idea that any of this was true. So I think it's worth it to share these thoughts with people, so you can realize that when government talks about "disability", there are levels, and there are degrees.