Seven Quick Takes--The First Draft Exists!

Linking up with Kelly!

I.

The FIRST DRAFT EXISTS!

Yay!

When I first got the contract information, the fact that Ave Maria wanted a first draft by June 1 was daunting to some people I talked to. “Can you do it in two months?”

HELL YES I CAN.

via GIPHY

II.

Why was I so confident?

Because I have journalism training. And political training.

And when you have both of those, you learn to write quickly, on ridiculous deadlines.

Deadlines? WHAT DEADLINES.

So, thank you to Professor Kelly Messinger in college for all the Chimes Wednesday nights where we ate Chipotle and wrote into the wee hours! And edited! And wrote! And edited!

III.

Now, that doesn’t mean it’s always easy, because sometimes….

via GIPHY

But then I apply my Maxim: You cannot edit a blank page.

Get anything on the page. Anything. Let it sit there and then come back later and edit it. You never know what can happen.

Chapter 10, for example? WENT OFF THE RAILS. I had no idea where I was going with that one, and we went somewhere I had not anticipated. But there it is!

(It might not stay the way it is. LOL.)

IV.

Speaking of writing—my ebook, Catholic 101, is now $5!

That’s it. Five bucks, y’all.

Go get it!

via GIPHY

V.

I also promise to have the Denver travel posts up next week. This week was just nuts, with getting the first draft done….oh, and getting a new CI processor!!!!!!!

VI.

So, if you want more on the CI, you can visit my series here. Basically I was glad to have hearing, but the processor I had had shortcomings. I couldn’t use the phone.

Now….I might be able to use the phone! I mean, what?!

via GIPHY

I can listen to my voicemails and understand them!

So far, this new processor is a game changer.

VII.

Oh, one more thing about the draft—a question I’ve been getting a lot is, “Well, didn’t you have to write the book before you submitted it?”

Short answer: No. Most places, for non-fiction, want a proposal, with a chapter sample, but not the whole book. I’ll talk more about the parts of the process later (especially in my newsletter!). But, no. I had to write the book to the proposal specs.

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

“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.”

via GIPHY

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

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

The Collegiate Peaks in Buena Vista

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.

via GIPHY

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!)

Seven Quick Takes In a Deluge

Linking up with Kelly!

I.

OK, so, first, I’m thrilled to tell you that the talk I recorded for Kelly’s conference has been accepted! Yay! I’m part of the speaker’s library that attendees will have access to!

What is this conference, you might ask? Kelly has created a conference for Catholic parents of kids with special needs, called “Accepting the Gift.” You can attend in person, OR (and I love this part), you can attend virtually! How cool is that? So if you can’t make it to New Jersey, you can still attend!

Here is the conference page, so check it out! And do attend!

II.

This is also the first talk I’ve done as an adult—I did a witness talk at my parish mission when I was sixteen—but I really do like my talk, all things considered. :) It’s called “Joy Anyway”, and it’s about living life with a chronic illness, because, a lot of the time, we hear from the parents of people like me, but not the actual people who have the illness, and so I’m thrilled that Kelly asked me to contribute my thoughts, because I do care about this quite passionately, as you all know. :)

And of course I love the parents! Parents are awesome! But it’s important to get the perspective from the person with “the thing” as well, in my book. So, thanks Kelly for asking me! (And accepting the talk!)

III.

OK so yeah, it’s deluging here right now. Lots and lots and lots of rain being dumped on Orchard House at the moment. I overslept this morning and this is probably why, because it’s really dark outside. Not that I mind—I generally like rainy days.

IV.

Today is part of the editing process in the writing of the book. My editor has sent me chapters back, and now I go through and play with them and see what I can do to make them better. Some of the changes I just accepted on the first go round because they were easy (like, adapting to the press’s style guide) or just made sense. Bigger changes require more thought and distance, so that’s what I’m doing today.

V.

My birthday was on Tuesday, so I’m thirty-seven now! And it was a gorgeous day, which is rare in central Ohio in early April—it snowed on my birthday (as in the day I was born). But yesterday it was 82 and kids were in the pool, which made me shiver just seeing them in there, because that water was going to be cold!

ANYWAY (digression over!), it was a good birthday with sun and good food.

No, Emily did not eat all this cake. Emily did not come close to eating all this cake. We shared it. :)

VI.

I also think that everyone should like their birthday. Because birthdays mean you survived another trip around the sun! Yay!!!!!! Birthdays are great! I mean, yeah, I’m thirty-seven, but to me, that’s sort of awesome. I wasn’t supposed to hit thirty-three. I wouldn’t have seen twenty-seven without Suzanne, my donor. So, yeah. Birthdays rock.

VII.

It’s hockey playoff time, and Dad and I are going to see the Jackets play the Tampa Bay Lightning on Sunday! This has been a bucket list item for me for awhile—seeing an NHL playoff game. The nice thing is that since the Jackets are playing Tampa, I can unreservedly root for them. When they play the Penguins in the playoffs (as they’ve done before), I can’t do that, I’m torn! But now, I can root for them all the way. It’s going to be great! The Jackets have all sorts of things planned—there’s a big plaza in front of the arena so there will be activities, and the arena opens up earlier than usual so people can head in and start the party. I hope the Jackets win! (They won the first game on Wednesday in Tampa in an amazing comeback. They play tonight. Pens are down one game to none against the Islanders. If you don’t care about hockey, I’m sorry this take was all hockey. :) )

Seven Quick Takes--House Updates, Writing, Hockey

Linking up with Kelly!

I.

So, first, the Penguins are in the playoffs for the thirteenth year in a row. This makes me happy.

(If you’re new here—I’m a huge hockey fan. The Penguins are my “main” team. The Blue Jackets are my “home” team and I want them to make the playoffs too, which they will do if they win one of their next two games.)

II.

Orchard House is in the stage of “personalization” or “zhushing” as they say on Home Town. I’m putting up pictures and other fun things, like my refreshed ribbon board in my bedroom:

III.

If you want to see how tiny Emily was in college, here’s my college ID closeup, along with one of my favorite magazine cutouts:

IV.

And about the button. It says “Italians for President Nixon.” Now, obviously, I wasn’t alive to vote for Nixon. But one of my best friends, Branden, is an auctioneer (as well as about 5 million other things, including our county clerk), and he loves political memorabilia, so he thought I’d like it, since I’m half Italian. And I do like it. It’s funny.

V.
The big pink piece of paper is an audience ticket my friend Amilia gave me. She was lucky enough to attend a general audience with Pope St. John Paul II, and she gave me the ticket. You can tell I’ve had it FOREVER, it’s all sun bleached, but I love it.

VI.

The dog picture? That’s Liberty, who used to be Colonial Williamsburg’s mascot. I was so psyched to meet her when we visited two years ago! She was such a good dog!

VII.

I could keep telling stories, but I’ll wrap up with a writing update! (Maybe next week I’ll tell more stories? What do you think? Because everything on this board has a story!)

So I’ve sent chapters 1-4 to my editor. She has sent me edits for chapters 1-2. So we are really making progress! Yayyyy!

Listen Up! (For World Hearing Day)

(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

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)

(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? :)

Seven Quick Takes

Linking up with Kelly!

—ONE—

I haven’t done this in awhile, so, hey, time to do one! Especially since we’re supposed to get a big old snow storm with insanely cold temperatures this weekend, so if you never hear from me again, at least you have this. (I’m kidding. I’ll be fine.)

This cartoon made the rounds a few years ago, but once again it looks like I’ll be living in Hoth:

—TWO—

There’s been a lot going on over here. I’m moving, so that’s the first thing—in March! So I have two months to get my place packed up. Which means that yes, I’ve been watching Tidying Up with Marie Kondo on Netflix, and I love it. (And no, she’s never said that you only need 30 books, where did people get this?! I have WAY more than 30> I have more than 30 cookbooks, probably—yes, I might have a problem.)

But I’ve really enjoyed the process. If you haven’t heard of her, the idea is that you get rid of everything that doesn’t “spark joy”, or that you need (like, a screwdriver, for instance. Or copies of recent tax returns.). So you let go of things that you’re just holding on to out of guilt or uncertainty or “just because”, and it’s done in categories: clothes, books, papers, “komono “ (miscellaneous—she divides it down further), and sentimental items. I’m on “komono”, and it’s mostly household stuff and knitting stuff that’s left.

—THREE—

Speaking of knitting, here’s this week’s yarn along! I’m making a drachenfels shawl, again. :) Deets are at Ravelry, here.

—FOUR—

In other news, I’m very close to submitting my book proposal! Oh my gosh. This has been a few months in the making but I think I’m in the home stretch! Yayyy!

And you can help me!

Please subscribe to the blog! This is something that really helps me with publishers. It shows I have people who care about what I write! So do that, and then follow my author page on Facebook? Every follower/subscriber is important! If you already subscribe, thank you! Mwah!

—FIVE—

The proposal is a memoir about my life with CF and transplant and how it ties into the idea that life is always worth living, no matter what’s “wrong” with you. Today is the March for Life, so yes, I feel it’s a timely topic. I’ve had people tell me that I shouldn’t exist. But I DO exist and so there. :-p

—SIX—

I made a holy hour yesterday, since I might not be able to get to Mass this weekend depending on weather. If you don’t make a holy hour (Or holy half hour, or Holy Fifteen Minutes!), can I recommend that you start? It’s restorative, transformative, energizing….it’s time with the Lord who loves you so much! Get thee to an adoration chapel! Or get to Mass early, if you can. God wants to visit with you!

—SEVEN—

And, also, if you missed it, Take Up & Read has a new study! We’re starting on Monday but feel free to hop in whenever! It’s called Call Me Blessed (here’s my blog post about it!)—and you can get it at other bookstores besides Amazon! Yay!!!!! It’s all about our vocation as women, our dignity as women, using women in the Bible and the writings of Pope John Paul II. I do hope you’ll join us!

Bible Study for the New Year!

I’m so glad to present to you Call Me Blessed, Take Up & Read’s first book with Word Among Us Press!

Since this book is published by WAU, you can get it LOTS of places, not just Amazon! For example, Barnes and Noble has it! So you can use their coupons and your membership card to get a reduced price! Yay! Or you can get it 20% off the WAU site!

This is a really lovely journal, tying together the stories of women in the Bible with St. John Paul II’s Mulieris Dignitatem (On the Dignity and Vocation of Women). So it’s a twofer; a beautiful work from John Paul II, and the Bible all in one!

There are also touches of color in this study, which we’ve never had before!

I do hope you’ll join us. The kickoff is on Monday, but if you are a few days behind, that’s fine. We don’t believe in “Behind”. :) I don’t have an essay in this one but I did edit it and got to read all these beautiful essays ahead of time!

If you have any questions, just let me know! I do hope you’ll join us in this lovely starting and in kicking off 2019 with the Word, thinking about our role as women, and Christian/Catholic women, in society. How are we to live out our vocations? Let’s pray and ponder together!

2019 Goal Setting!

I really love Lara Casey’s annual goal setting series (here’s part one!), and I adore using her Powersheets. The Powersheets have really been instrumental in setting GOOD goals, and in accomplishing big dreams for my life, so I heartily recommend them! (I don’t get paid to say that—I really do just love them!)

So I always look forward to the annual series, which I read along with doing the Powersheets prep work, and this year, I’ve got four main areas I’m working on:

Faith

Finances

Fitness

Writing

(OK, I couldn’t think of an “F” word for writing!)

First up: FAITH

To be consistent in prayer and deepen my spiritual life to create a deeper relationship with God.

If God is the center of my life—which He is—then I need to make my days revolve around that. To that end, one part of this goal is to consistent in prayer. As a Lay Dominican, I say at least Lauds and Vespers (morning and evening prayer) every day. I need to be consistent in these, because often I’m not, especially vespers, because that’s around dinner and chaos and all that.

Another part of this is getting deeper into the Bible, which is part of the work we do at Take Up & Read, anyway—well, part of the work, it’s all of the work. :) It’s our reason for existing! So I’m taking time to get into the word every day before I eat lunch. Recently I discovered for the first time Isaiah 54, and man, did it ever speak to me! More on the later. :)

Third, getting to daily Mass more often. To that end I’m working on waking up earlier so I can get to the 11:45 Mass on time. It’s downtown so it’s not just across the street, but I can do it! :)

Lastly, incorporate more holy hours. I LOVE holy hours. So I want to do one at least once a week, which will be easy to do once I move because there’s a church less than half a mile away with perpetual adoration. Winning at life!

Second: Finances

I made good progress on this last year, but I still need to save a complete emergency fund. So that’s the goal right now, as well as doing the Contentment Challenge and realizing that buying stuff isn’t going to make me happy, because, yes, sometimes I’ve done retail therapy. But I’ve also been better about that. So progress being made here, but it’s still an ongoing goal!

Third: Fitness

Ohh boy. We know I don’t like to work out, right? Well my goal is to find something I liek to do and do it, even if it’s for five minutes, every day. When I was sick in November and December and my joints and tendons took a huge hit because of the meds I was on, I realized that it was better than it could have been—because I’d been keeping my joints and tendons nice and flexible and warm. But I still had problems with them, and my right knee still isn’t 100% back. So I’m working, right now, on that aspect of fitness—getting back to baseline with my knees. I know I’m closer to 40 than 30, so this is important going forward! Gotta stay sharp.

Also part of this is to continue to meal plan, to eat healthy(ier) snacks, and also work on saving treats for feast days. I want to eat more “liturgically”, if that makes sense—fast when the Church fasts, and feast when it feasts! No, that doesn’t mean hard core fasting, but it does mean saving the special meals like champagne risotto (New Year’s Eve meal this year—YUM) and creamy chicken thighs and things like that for patron saint days or when guests come over. I’m not going to eat lentils and honey a la John the Baptist, but at the same time, I’m not going to go nuts every day, either. Simplicity. To that end, I’m also reading From a Monastery Kitchen * and Sacred Feasts. *

And finally….

Writing

I am currently working on a proposal. It’s been a few months in the working but I was getting so frustrated with it—I was thinking that it had to be perfect, and if it wasn’t perfect I was going to blow it and all these other not happy thoughts—so I took some time away from it. Part of that was being sick in November/December and part of it was a deliberate decision. I backed off and actually prayed about it.

Last week, I dove into it again, and I was shocked to see how the words were coming—I was creating pages that I did not hate! Huge step forward. So I’m hoping to have the proposal done this month and sent to the acquisitions editor (pray for me and my little proposal, please?).

Those are the four areas I’m focusing on this year. Also, I’m moving in the spring, so there will be serious decluttering/cleaning/all sorts of goodness happening in that department as well!

What about you? Do you set goals or make resolutions in the new year? What are they?

*=affiliate links

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

(c) Erica Kay Photography

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?

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

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!

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!

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

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.

A Friday surprise--quick takes!

I haven't done one of these in forever, so maybe it's time to do them again? :) Linking up with Kelly! :) 

1. 

Dad just got back from his trip to London for a DevOps conference (DevOps is IT related stuff, for you non tech geeks out there). I was a just a little jealous, especially since he got to go to Westminster Cathedral for Mass and see Buckingham Palace and just be in London, which is really the greatest city in the world. 

Westminster Cathedral 

2. 

He also brought me back the papers, which delight me to no end. I love getting papers from other countries. The first thing I noticed is how big they are? No American paper is this big anymore. It's amazing!

So yeah, I'm slowly savoring the reading of the papers. Because it's just fun, and that probably makes me a nerd. But a nice nerd. :) 

3. 

I always knew that London was fairly far north, but in checking the weather for my dad's visit, I noticed that it's a LOT farther north than I thought--the sun was rising at 4:30 AM! That's just amazing. But also, in the winter, London has to get dark pretty quickly. Sort of sobering. But I do think it would be cool to see one of the white nights, or even a sunrise at 4:30 (provided I could go back to sleep after seeing it. :-) 

4. 

Yes, my "desk"--my kitchen table--is a mess. I've got SO many things going on right now. I've started writing a new book (YES! Wheee! Let's hope someone wants it!) about churches and accessibility. I've been getting new library books like every day since the library actually has books I want to read, and they can be delivered to my local library so I don't have to drive all over creation to get them (our library system is huge).  I've been working more on my sketching, and I've been packing because we're going to Pittsburgh later today. So yes, it's nuts, and my table is crazy. 

5. 

Also, Catholic 101 is currently on sale for FIVE BUCKS! If you don't have it, you can grab it here. This is the cheapest it will be all year! 

6. 

I've been knitting, too, even though the hand thing took a bite out of that, but I finally got some more yarn for my scarf project so I'm back at that. I promise a Yarn Along next week!

7. 

And I also promise to do a reading round-up soon. I've been reading so many books that I need to talk about them. Soon, I promise!

A new project and Catholic 101 SALE!

I've got a new project going on: 

Opening the Roof. 

This is a blog that talks about accessibility and churches--specifically, Catholic churches, because I'm Catholic. I know that we're not the only ones with this issue--I asked on Facebook, and my friends of all denominations said that their churches aren't great, overall, with this issue--but I'm Catholic, so I talk about what I know. 

The blog presents not only problems and food for thought, but resource and solutions. So it's not just a Blog of Complaint. We're not just airing grievances! 

You can sign up to follow the blog at the bottom of the blog's homepage--just keep scrolling! 

The other thing is that my transplant anniversary is almost here! So in celebration, Catholic 101 is going to be five bucks. Yup. That's right. Five bucks, guys! It's normal $9.50, but for the anniversary, it's $5.00. This kicks off tomorrow (June 26) and will go through July 13 (two days after the anniversary proper). The only other time the book is discounted is Black Friday Weekend! So get it now or wait until November. :) 

So, starting tomorrow, head to Gumroad and pick it up! I will have another post tomorrow so you can't miss it. :) (It's also always available through the sidebar button and the Hello bar at the top of the page, but the new pricing won't hit until tomorrow.) 

"Even crazy people like to be asked"

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.”

The Big Bad Wolf

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!

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!