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.



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.



#10 I didn't die at barre class

journal, transplantEmily DeArdoComment

Seriously, people, this is worth sharing.
I hadn’t been to a Pure Barre class in about four years. And when I went, I would get so frustrated, constantly comparing my body to the other bodies in the room. Why couldn’t I do this? So, of course, I stopped going after about 10 classes.

But last night, I had this strange compulsion. I was going to a Board and Brush class with my SIL and my brother. There was a Pure Barre studio right by the class and their apartment. I could….go to class and then meet them for dinner and then paint.

I signed up for a class, my first in almost five years.

What in the world?!??!

Before I went in today, I gave myself a pep talk. Emily. You cannot compare your body to theirs. You have maybe half the lung capacity. You have a wrist that hates plank. But you know what? You are strong anyway. You can modify. Just get through the class.

So that was my goal. Get through class.

And I did. And not only that? I’m stronger than I was five years ago. I could get through the warm up and arms almost easily. I could do leg work without feeling like a failure. Sure, at the end, when we did crunches with legs in the air, I couldn’t do that. But you know what? THAT IS OK.

I left class feeling really proud of myself, and energized, and amazed that I felt stronger than I had when I was younger.

This is really different for me. I used to leave class frustrated and angry at myself, or at the very least, with a “got that done” mindset.

Maybe….I need to go more often?

Maybe my body can do things?

And board and brush was awesome. Here’s what I made:

IMG_7837.JPG

AND I got to have fun with Liz and her cat Vito and knit and talk books and have tea this morning

So basically, a great day.

"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
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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! :) 

 

2018 Goals: March update and April goals!

goal setting, Barton Cottage Crafts, knitting, memoirEmily DeArdoComment
GOALS .png

So, if you're new to this, I use powersheets to set my goals. I love Powersheets! You can catch up on this year's series by going here

March was the longest month. It really was! But there was progress made in some areas!

Goal Number 1: 

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

 

March goal: Finish baby step one--get an emergency fund in place. 

Status: ACHIEVED! Guys, I am so proud of this. And it was so enjoyable to know that, when I was having computer issues earlier this month, I could go to the store and know that if it needed repairs, I could pay for them! This fund also allowed me to replace part of my Bionic Ear without freaking out. 

April goal: Start baby step 2--also known as the Debt Snowball. This is where you list all debts, smallest to largest, and start to pay them off, by moving as much money as you can toward to the smallest debt. Once that's paid off, that money + the minimum payment for the second debt goes to the next debt....you see how this works? I will have the first part of the snowball done by this fall. Yay!

 

Goal Number 2: 

Find an agent for my manuscript

March goal: At least one two-hour block of time outside the house working on my proposal. It doesn't have to be finished. But I have to dedicate at least two hours to drafting one. 

Status: yeah...no. AGAIN!

April goal: GET IT DONE. And I've already started! I've written out the basics of a proposal and now I just have to tweak/re-write the sample chapters. I am ON IT. 

Goal Number 3:

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

March goals: Weekday Mass once a week, confession once a month, holy hour, daily vespers (evening prayer).

Status: Everything but that weekday Mass--because every time I tried to go, there was no place to park. I'm not kidding. So I tried, God! But I did get in a holy hour and daily vespers. Confession, no go either...I wanted to go wen I went to Mass. Face to face confession is offered at my parish on Fridays, which was the day I wanted to go to Mass as well. But no parking. Sigh. 

April goals: confession, holy hour, Mass once a week! 

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. 

March goals: Daily yoga glo classes, weekly meal planning, go to bed by 10:00 (be IN bed, not necessarily asleep). 

Status: I did REALLY well here. I attended a yoga glo class almost every day! The meal planning was OK, as was the bed thing. 

April: Focus on healthy snacks, regular workouts--yoga glo strength courses, continue meal plan. 

Goal Number 5: 

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

March goals: Keep trucking. :) 

Progress: I finished my drachenfels shawl  and am almost done with a current commission. That means that BCC is open for new work! If you'd like a scarf or a shawl, please contact me and we'll talk! I can do them in solid or variegated colors. Shawls at $45, and scarves are $35, and shipping is included! 

April: finish new projects (I have two that I want to knit), get more commissions!

Goal Number 6: 

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

March goals: ZERO OUT (with alarm at 9 pm); zone clean weekly; weekly surface clean; contentment challenge; finish Emily Ley's simplify challenge! 

StatusZeroing out just isn't me....I sort of tried but it doesn't work. I'd much rather come down in the morning and clean a bit. So that's what I switched to. I'm in zone cleaning weekly, and doing the weekly surface clean. 

The Contentment challenge is almost done!

The biggest thing I did this month: 

Sorry it's blurry!

Sorry it's blurry!

This was a terrible corner on my first floor. I hated it. I had no idea what to do with this empty space. 

So I was sick of looking at it, and went on an organizing spree. I dumped my old stereo that I NEVER use from my book case, and added a new shelf of "favorite books". That gave me more space in all my bookcases, yay!

Then I went on the IKEA website--motivated by a birthday coupon--and looked some something that would fit here. KALLAX would! KALLAX is pretty!

KALLAX IS HEAVY. I had to open the box and take the pieces in piece by piece. :) After an hour, I had entered in the realm of adulthood, because I had put together a piece of IKEA furniture. 

And now, behold!

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Isn't that much better

So, for April: My goal is to get another one of these units to go in my living room, to hold some other things that are currently being "stored" crappily. :-p I will also continue weekly cleaning (both detailed and surface). But I want stuff up off the floor. I'm tired of living like a college student! :-P 

Goal Number 7: 

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

March goals: Shawl--finish? Maybe? Continue Artist's Rule. 

Status: DONE, on both counts! Yay!!!!

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

Progress is happening on the first project: 

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It's a really simple project, but I love this yarn. I'll talk more about these in the next yarn along. 

So, March had ups and downs. But it also had some great progress!

 

 

 

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. 

 

Twelve Years, and a Celebratory Pork Chop

food, health, transplantEmily DeArdo3 Comments
Me as an intrepid toddler. 

Me as an intrepid toddler. 

Twelve years is a substantial amount of time, if you think about it. It's your entire education from first to twelfth grades. It's an entire pro sports career, if the player is lucky. Ad it's how long I've been alive with another person's lungs inside me. 

It's insanely lucky. It really is. When I consider the people who don't get listed, who don't get the call, and then who don't survive past five years (which more than half of female lung recipients don't)....it's amazing to be so gosh-darn lucky. It's miraculous, really. 

So I thought it would be appropriate to share a good bit of food with you. Before transplant, I hated food. I liked cooking and baking, but I really didn't like eating much of it. Post, I loved it. The entire world of food opened up to me. 

Just recently I've been working on tempering the two--eating what's good for me, in good portions, and not going overboard on the stuff that's delicious but not so healthy. I'm seeing results on a lot of levels, which is exciting, but I'm also learning how to embrace cooking really great food that's also not terrible for me. Thus, this pork chop recipe. 

You can eat it just as it is, or serve it with some buttered leeks

Here's to more celebratory pork chops. 

Celebratory Pork Chop

This is the best pork chop you will ever have. I guarantee it. 

Start with two thick pork chops, about an inch. Don't trim the fat off. Season with with kosher salt and fresh ground pepper. 

Preheat the oven to 375. Drag out your oven proof skillet (cast iron is great). Heat it over medium high heat, and add olive oil to it. When the pan is hot, add the chops. Cook for three minutes on each side, then throw the whole thing, pan and chops, into the preheated oven for 30 minutes. Remove the pan and put the chops on a plate to rest for four minutes. 

Make a pan sauce--in the hot pan, add 1/2 cup water or stock, let it reduce a bit. Add 2 teaspoons dijon mustard and a good knob of butter--about a tablespoon, but whatever odd pieces you have in the fridge. Whisk together. Serve the chop with the pan sauce. 

Enjoy deliciousness. 

(Also, are you an organ donor? Please be one. When I was first listed, 18 people died every day waiting. That number is now 22 people, and the national list stands at 118,000 people who are waiting for new organs.  Sign up here. ) 

Charlie's Dignity

current events, healthEmily DeArdoComment

I love my parents. They've done yeomen's work the past 35 years, helping to keep me alive. I know parents who do not do a good job with their children's illnesses--my parents have been rockstars on every level. 

I love my doctors. They are also rockstars. They are the people who continually keep me alive, even when other doctors have told them that it was a waste of time and/or effort. I have a doctor who got an international pager (back in the day) so we could always contact her. I have nurses who will answer my emails at any time. I've worked with incredible medical professionals of all stripes. (And some that suck. But we're not talking about them today. We're talking about the awesome people.) 

Most of the time, the two groups of awesome are in agreement about what should be done. But not always. When I was in the ICU in 2001, and no one knew what was wrong with me, several of the ICU doctors were ready just to write me off. My parents weren't, and neither was my doctor, or the head of the ICU, who worked insanely hard to figure out what was wrong with me--eventually, they did. And I'm writing to you today. 

Doctors are awesome. But doctors can be wrong. And parents are awesome. But parents can be blinded by love. 

Which is why we need moral and ethical guidelines in place, in cases where the two groups of Awesome cannot agree on what is the proper course of action.  Except...what do we do when doctors want to embrace a course of action that will kill their patient, and the parents are vehemently opposed? 

If you aren't familiar with the case of little Charlie Gard, here's the nutshell: Charlie has a very, very, very, VERY rare disease--so rare that maybe 17 other people in the world have it. Since birth, Charlie has been treated at London's Great Ormond Street Hospital (GOSH). Because of Charlie's disease, he cannot breathe on his own, and he cannot see or hear. 

GOSH wants to take Charlie off life support so he can die, because they feel he's not going to get any better, so it's time to embrace the inevitable. His parents, obviously, are against this, because Charlie is alive with the help of ventilators--like many other people, in ICUs the world over, or people who have tracheostomies. They are alive because of machines, but they are alive. A ventilator or breathing support really isn't an extraordinary measure, these days, on its own. 

The parents would like to take Charlie to the United States to try another treatment--GOSH won't let them. This case went all the way to the European Court of Human Rights, which sided with the hospital.  (Isn't that just dripping with irony?) 

What's the hospital's argument? That the treatment the parents want to try will cause Charlie pain and suffering and it won't work, so they refuse to let Charlie's parents try it

I find the hospital's "reasoning", on multiple levels, insane. One because doctors are supposed to help patients--not kill them, which is what would happen if Charlie was taken off the ventilator. It's no different than removing a breathing tube for a quadriplegic. Now, Charlie's condition, as it stands now (and as I understand it), won't get better. He's going to die. But that doesn't mean the parents don't have every right to try another treatment, in another country, that the parents are going to pay for. The money's already been raised. Hospitals in the US, as well as Gesu Bambino hospital in Rome (which is run by the Vatican), have offered to take Charlie as a patient. But GOSH will not release Charlie to his parents' care. 

Just because Charlie cannot breathe on his own, cannot hear, and cannot see doesn't mean his life has no value. OK? I can't hear without my CI, really. So does my life have no value? I've been on ventilators before. Did my life have no value then? Does Stephen Hawking's life have no value, because he has a tracheostomy? Or people in wheelchairs, or quadriplegics, who also need help to breathe and do just about anything on their own? Since when is the value of a person determined by what they can do? 

When a person is dead, then yes, it's time to let the child go. But Charlie isn't dead. This isn't the case of parents fighting a hospital over a brain death certification. Charlie is alive, and the hospital wants to stop that--because he might be suffering. And he's not going to get any better (they think. They might be right. But we don't know that.). 

I talk about this sort of thing a lot here, because people need to realize that life isn't about what you can do. Life has value because a person has value, no matter what. Pain and suffering are inevitable parts of life. 

But apparently no one told the folks at GOSH, or the European Court of Human Rights, this. Because Charlie's life, to them, isn't really all that important. They've kept him alive long enough. Now it's time to just shut of the machines and kill a little boy. And if we're going to talk about pain and suffering, they will basically suffocate Charlie by removing his ventilator. Is that going to cause pain and suffering? I think so.  

I'm not going to say the hospital doesn't care. I'm sure the nurses and doctors who care for Charlie care very much. But the state has clearly overstepped its bounds. 

Charlie can't make a decision on his own about his care. His parents have to do it for him. They would like to, at the very least, take him home to say good-bye to him, and let him die with them, in real dignity, not the fake dignity the state is suggesting.   If Charlie's parents decided that they wanted to pursue hospice care for their son, that should be their decision, and the hospital should give them the resources they need to make sure that Charlie can have a peaceful passing. 

Is it inevitable that Charlie will die? Yes, because we all will. But there is absolutely no need to hasten it, the way GOSH wants to, because The Almighty Doctors have decided that it's time for Charlie to die. 

 

Surgery update!

health, transplantEmily DeArdoComment

Part...I have no idea. Three, maybe? 

So just to recap: had stitches in my head. (Wear sunscreen!) Had a follow-up two weeks ago, where the doctor checked out the healing. It's progressing well, but he wanted to keep the stitches in for a little longer. 

Today, I had my second follow-up and the stitches are out! 

Yayyyy!

So now I just have to apply vaseline once a day and I can't totally submerge my head in the pool--but I generally don't do that anyway. 

Happiness! 

Surgery wrap

healthEmily DeArdoComment
IMG_4943.JPG

Above: Post-surgery necessities .

I'm back! I didn't have to stay overnight, either, which was great. 

So, mostly the surgery was uneventful. The nurse I had didn't want to use my port because she was afraid it would get infected. Um, OK? I mean, unless you're planning on rolling around in mud with hogs and then inserting it, I think we're good. Anyway, Dad and I made it clear that the port was all I have going on, good vein access wise, so people came in and got it going. Per it being mine (and therefore, difficult), it took two tries to get it working, but once it got going, it went merrily on. 

The anesthesiologist was a Penguins fan, so I appreciated that. I tend to get really nauseated after surgery, but this time the hospital gave me a little anti-nausea patch to wear, that worked like a charm! I'm a fan!

The only other issue we ran into pre-op was what to do with my CI. Since we were moving scalp around, I didn't want my CI to become lost in the process. At the same time, I needed to be able to hear if people were talking to me in the OR. So I managed to keep it back into the OR with me, but not my glasses, which annoyed me, since lip reading and being able to see are important to my being able to figure out what's going on around me. Oh well. (Another difference between a children's and an adult hospital--at NCH, I can keep my glasses with me the whole time. Makes my life easier.)  

The surgery took about an hour and then I was in the recovery unit for awhile. Dad and I got home around 5:30, 6:00, and I had a very small dinner because I had a very sore throat, and was in bed by nine. God bless Halo Top ice cream! (Yes, I've been intubated many times before, but I don't remember it being quite so uncomfortable after. But whatever. It's fine now) 

Today I am feeling pretty good. The pain meds I have keep the pain really well in check, which always makes me happy. I'm not allowed to exercise until next week, post-surgeon clearance, so there's going to be a lot of reading happening this week. Not that I mind that. I can make a dent in my book pile! 

The other thing is the lovely dressing I have on my head. I can shower--yay!--but there is part of the area that the surgeon left open to drain a bit--in order to get it to close he would've had to have made a much larger incision. So we're just letting it drain, but that means I have to keep ointment on it, and gauze pads. It's not nearly as bad as post-Mohs, or even immediately post-surgery, but it will look sort of odd. I'll probably be trying to hide it under my hats. :)