Seven Quick Takes--June Is Bustin' Out All Over

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Since it’s Corpus Christi this weekend….

Gosh I love Corpus Christi! Of course I’m not going back to Mass yet. So I’ll have to celebrate at home. I might go back to Mass in July. I have a doctor appointment later this month and we’ll talk about those things.

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From the blog this week

Heart Note

I’ve stopped the Wednesday Notebooks—did you like them? Because I can bring them back. Let me know in the comments!

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Also, one of my perennial favorite posts: The Real Lucy Pevensie

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So this week is sort of the “calm before the storm” in a sense. I had nothing scheduled all week. I’ve enjoyed it. :) Next week, however, it gets a little crazy: I see my ENT on Tuesday and I’m really happy about that because man, do things need checked and cleaned out. I see my dermatologist on Wednesday. And on Friday, I have my yearly transplant tests, but they’re at the New Center, so it’ll be….interesting. I mean the tests are all tests I’ve done before. But it’s new people and a new setting and I have no idea how The Mask Thing will go—because usually, medical professionals take them off so I. can understand them. Will that fly here? No idea. Sigh. I’m a little nervous about that.

Friday is also my dad’s birthday! And then my BIL’s birthday is on the 21st, and Mom’s is on the 22nd, and their anniversary (Mom and Dad’s) is the 30th, and that’s also my grandma’s 90th birthday!!! (And my sister and BIL have their anniversary on Saturday!)

whew!

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The week after I have my first appointment at the New Center. Same doctor, but a much larger team—with more doctors as well, so it’ll really be like my old CF center, where you have multiple docs but there’s one who usually follows you. I will report back on how this goes.

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I’m also adjusting my insulin, and wow, whenever I adjust it, my body gets cranky. I had some sort of bug on Tuesday this week, so that’s why no book club. And I’m hungry. Which is normal when you adjust insulin but it doesn’t make me any happier to know that it’s normal!

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Finally some book business!

If you would like a signed copy: They are $20. Email me here. The price includes shipping and book gooides!

If you have a copy and would like a signed book plate, those are $3. Again, email me. You also get book goodies.

I also have an ebook, Catholic 101, that is $5!

Book Club is on THURSDAY next week because of the various doctor appointments. :) So Thursday at 3:00 on my Facebook Writer Page. Previous book club videos are also there, so you can catch up to your heart’s content!

Seven Quick Takes--Live Like Me!

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OK, so my friend Andrea gave me a great idea for this post: About HOW TO LIVE LIKE ME in this time of virus nuttiness! :) So after some book business I will share!

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BOOK BUSINESS :)

The Living Memento Mori book club has kicked off!

You can watch the previous two installments on my facebook page! I’d love to see you at our next meeting on Tuesday, when we’ll talk about chapter three.

Also, my book is on sale at Amazon, so you can get it at a reduced price! Yay!

Also, Ave Maria Press is having a sale!

So you can pick up the book there too!

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OK so, living like me.

One of the things I’ve said in this crazy virus time is that immunosuppressed people like moi actually know how to protect themselves from viruses and things, because we do it all the time.

So now, I shall share my tips with you!

Let’s talk about crowds in general. About people. The first year after my transplant, my team was strict about certain things—no malls in the winter, things like that. I couldn’t go to Mass for the first three or four months post-transplant. Since I’m not almost 15 years out, a lot of those restrictions have eased.

I still don’t really like to fly during flu season and avoid it if possible. But I go to the movies and the mall and all sorts of places. I take precautions. Things like eating from a salad bar, I still don’t do. I try to avoid buffets as much as possible, or, if possible, I try to serve myself first so that I avoid most of the people’s germs getting on the food. These are things I and my family think about. You might not have to think about it, but if you’re worried about the virus, it might behoove you to start thinking about these things and deciding what you are comfortable with—as in, your personal level of risk.

I know people, for example, who, post-transplant, change their clothes if they' are in the hospital for any period of time. I never did that. First off, it would’ve been insanely impractical; I often went from clinic appointments to work. But also, because I was comfortable with that level of “exposure” or “risk.”

So, deciding on your personal risk level is important. And realize that not everyone shares your feelings—and I don’t expect everyone else to live like me! :) But if you want to know my tips, here we go.

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Carry hand sanitizer. Get one of those little key chain things from Bath and Body Works and put hand sanitizer in it. Grab sanitizer whenever you’re in there to stock up on body wash or whatever—it’s almost always on some sort of sale. Then you have a stockpile! I keep one in my desk and also in my purse.

NOW: Here is how you use it.

When you touch things, you use the sanitizer. Touch money? Sanitizer. Use the pen at the credit card kiosk thing at the store? Sanitize. Use the gas pump? Sanitize. Just do it. It becomes a habit. In the hospital rooms at the resort there is a sign that says GEL IN, GEL OUT. That means use the sanitizer gel when you come into a patient’s room, and when you leave it. So think of that. Gel in. Gel out. Clean hands! (You don’t have to use it EVERY TIME YOU TOUCH SOMETHING. You’d go nuts. But use it at various times when you’re in a store. Definitely use it when you leave. Things like that.)

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BRING YOUR OWN WHATEVER

Carry your own pens in your purse, so they’re “clean”, and no one else uses it but you! If you use the pen at the doctor’s office, sanitize your hands after you use it! (Also clean off your cell phone, don’t let other people touch it, and if they do, clean it again. Normally I’m not fanatical about this, but right now, it can’t hurt!)

I have my own Magnificat for a few reasons—because I wanted all the prayers to help me know what the priest is saying at Mass, but now, it’s so I don’t use the communal pew missal! It’s clean! It’s mine! No one else messes with it! Only germs on it are mine. :)

Have tissues in your purse, so that if you have to blow your nose, you can and there you go. :) (Also useful for spitting when you have productive cough—isn’t CF elegant? :-P)

When I fly, I bring wipes, and I wipe down the tray, the seat back, the seat rests, and anything else I’m likely to touch. I am really germaphobic when I fly. Now, who knows, I might be that way at a restaurant.

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Don’t open doors with your hands. Use the handicapped switch plate, if there is one—just bang it with your elbow. Push against doors to open them. Also, if you’re wearing gloves (like regular winter gloves), you’re OK. Basically you want to avoid “high touch surfaces”—if you can’t, then, sanitize and go.

In the bathroom you can try to use a paper towel to open the door after you wash your hands, or just sanitize when you get back to your seat. (B/c not every place has paper towels, but they need to bring them back, since they’re MUCH more effective at removing germs from hands after you wash them than the “air dryer” thing.)

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Demonstrate good germ hygiene. Cough into your elbow. Blow your nose once and toss the tissue. IF YOU ARE SICK STAY HOME PLEASE. This, really, is key. I can do all sorts of things to protect myself, but if you come to church/work/whatever, sick, you are putting people at risk. Please do not be stupid. If you MUST come to work sick, then do whatever you can to avoid infecting others. Don’t sit at he communal lunch table! Cover your cough! Etc.

I am not perfect about all this—ask my mom! :) But I’m still alive 15 years post-transplant so I must be doing something right.

Did I wear masks out and about before? No. Not unless I was on a plane or in a hospital (and even in a hospital under SEVERE duress. I hate wearing them). I do have them—as in, real surgical masks. (I also have cloth ones, thanks to my friend Elizabeth!) I will be wearing them when I go out and I’ll keep a stash in my purse, just like I do with tissues and hand sanitizer.

The whole point of a transplant is to have a life after transplant. I know people who are SERIOUS germaphobes post. They don’t open their windows when someone is cutting grass outside. They don’t open car windows if there’s construction. They’re terrified of leaving their house.

That was never me. The point is to live, but not live stupidly. I try not to do stupid things.

Like I said above, I’m not perfect. But a lot of people are freaking out about being in public with anyone, with touching anything, and I’m going to tell you that there are ways to do it and be safe. There really are. I know because I do it, every day, year in and year out, that don’t involve shutting everything down and never leaving your hobbit hole again. I went to the pool. I went to hockey games. I went to amusement parks.

In short, I had a life.

You can too!

Seven Quick Takes--Easter Friday

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HE IS RISEN! Wooooo!

Let’s try to party as much as we can? OK?

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Little bit of business first—Ave Maria Press is shipping books again, and my book is on sale!

The book’s sale price is $9, so grab a couple, stock up! Or buy some other great books—Joyful Momentum , Pray Fully, and Giving Thanks and Letting Go, are other great reads!

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On the blog this week:

Wednesday Notebook #5

Emily Knits a Cardigan!

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Whew, I feel like I have a lot of things to tell you, but I don’t know if I really do! :)

My birthday was last Thursday—Holy Thursday. Obviously we didn’t “go” to Mass. I watched Bishop Barron’s Mass from Santa Barbara—his Masses are captioned, so that’s why I watch those in particular.

There was cake….

There was mucho birthday yarn….

There were other gifts, too, but I didn’t take photos so I’ll have to talk about them next week. :) Maybe I’ll do a whole birthday post so we can have some fun?

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And Easter was weird, too…..I mean, no Mass, for starters. I did watch a Vigil recording at my home parish. BUT—IT IS STILL EASTER. So even though it’s not what we’re used to, the Resurrection still happened. :) We are still Easter people!

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(LONG!)

A couple things that I’ve been thinking about—If we’re all going to be wearing masks for the near future, I, and other hearing impaired folks, are massively screwed, because we read lips. (Well, some of us do!)

Can I just ask—if someone asks you to pull your mask down when you’re talking to them, can you step back and do that? Because otherwise, I really have no idea what you’re saying. In hospital settings my doctors and nurses don’t wear masks, because we end up having a “What did you say?” marathon. It’s just not practical. I’ve seen some pieces that have talked about face time calls or having someone with you to “translate.”

Massive sigh.

Guys. First off, if I had to bring one of my parents to every doctor’s appointment I had, they’d go nuts. And they can’t go to every one. Second, this denies me my agency. I hate to say that because it’s sounds so jargon-ish, but people need to talk to me, not the other people with me. ME. THE PERSON, THE PATIENT.

There are, apparently, masks with clear sections around the lips for lipreading in development. They have to be FDA approved, for starters. And then put into production. And honestly, I don’t think they’re going to be produced for a while yet, because they’re just not a priority.

It is already hard enough for me to get hospitals to email me or talk to people who aren’t me because I can’t use the phone. But if mask wearing becomes super en vogue, a lot of us are really screwed, and I’m going to be either having meltdowns in stores, or I’ll be answering all the wrong questions and looking like an idiot.

I’m trying not to freak out about something that might not happen. But I would ask you all to be aware—if you’re talking to someone and it seems like they’ve really lost the plot, and you’re wearing a mask, chances are they’re hearing impaired.

Oh, and also—and this is just in general—if I ask you to repeat yourself, please do it. Don’t huff about it or be annoyed about it. Just repeat yourself. You don’t need to start with “I said.” And also DO NOT SAY YOU SAID NOTHING. You clearly said something.

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On that note….happy Friday? :) I’ve been watching a lot of the Met Opera live streams. If you’re an opera fan, be sure to check it out. If not, check it out! Tonight is Madama Butterfly, super popular, and a great first opera! Also, this is a gorgeous production.

Illness & Piety

The second station: Jesus Carries His Cross

A lot of dioceses are dispensing their Catholics from attending Mass; some are shutting their churches completely. It’s a strange time to be Catholic in America—what do we do without Mass?

We know that we are required to attend Mass unless we are sick, find ourselves really far from Mass, or for other big reasons (you’ve got a sick kid and you have to stay home to take care of her). Not attending Mass is a mortal sin, but, like all mortal sins, that means there are three criteria for it: Grave matter, full knowledge, and deliberate consent.

If you live in a diocese where the bishop has dispensed you from attending Mass, you’re not committing a mortal sin if you don’t go. We don’t know a lot about this virus. What we do know is that a person can have zero symptoms and be contagious! That’s scary.

Even before the dispensation came down from Ohio’s Catholic bishops, my transplant team had told me that they didn’t want me going to Mass. Was I super pleased with this idea? No. Am I listening to them? yes.

To me, this is very like life right after my transplant. I didn’t attend Mass for three months, because I was severely compromised. To go would not have been a good thing. (And also, it was an uncomfortable thing. Most Catholic churches have wooden pews. When you weigh 90 pounds, your bones really feel that wood, let me tell ya.)

I am being obedient to my doctors, and not going. My health is important and I know they want what is best for us.

I’ve seen some people talking about how our physical health isn’t more important than our spiritual health. This is true—but, that doesn’t mean that we should be reckless. There are saints who were told not to do so many penances, that they were being too hard on their bodies. It’s a balance.

I am NOT suggesting that we skip Mass just for the fun of it. I am saying that at this time it’s important to think about other people at Mass. (And really, all the time…)

People like me aren’t going. But that doesn’t mean that there won’t be people at Mass who take care of immunocompromised people, or work with them. If they get sick, that’s a big problem. So let’s remember basic good practices.

If you’re sick, don’t shake hands at the sign of peace! Use hand sanitizer. Cover your cough. Leave some space between yourself and other parishioners, so you don’t run the risk of getting them sick. If you have the flu, stay home!

The criteria I use to determine how sick I am is thus: If I would miss work, then it’s fine for me to stay home. If someone said, let’s go to Chuy’s, and I wouldn’t go because I feel awful, then I’m sick enough to not go to Mass.

I can see why some bishops are closing churches—because people aren’t doing what is right and prudent. They’re going to Mass and spreading germs everywhere, in flu season, all the time. This is not cool, folks. Use the best practices I outlined above all the time, not just now!

Also, Masses still happen with out a congregation. Carthusian monks, for example, say Mass everyday without a congregation. I imagine that priests will still say Mass, even if the church is empty.

So, what can you do if your dioceses has shut your churches, or if you are staying home from Mass?

• We can make a spiritual communion. This is important!

• We can read the Mass readings (Magnificat is offering its app for free right now—daily Mass readings and devotional readings every day!)

• We can pray the rosary, or parts of the Liturgy of the Hours.

• We can perform spiritual reading.

In this time, you might want to check on your neighbors who are sick or older, and see if you can do anything for them to help them out. Maybe you could pick up their groceries for them or something, or put gas in their car.

Just because we can’t get to Mass doesn’t mean that we can’t still practice our faith. Yes, the Mass is the source and summit of our lives. Yes, it’s vital.

But sometimes life intervenes and we can’t worship the way we’d like to. I’ve experienced that a lot in my life.

St. Teresa of Avila once received instructions from God to build her convent somewhere. Her bishop then told her to build her convent somewhere else. Teresa obeyed the bishop, because she knew she owed obedience to him. She said later, when God asked her about this, that she knew her bishop was telling her what to do and she owed him obedience; she might have imagined what God told her to do. (This story was in the book Be Holy. I’m paraphrasing here.)

Keep calm, guys, and carry on—and PRAY. Don’t rage against your bishop and take offense. Pray. If you can go to Mass, weigh if it’s prudent for you and your family. If you go, act responsibly—don’t crowd pews, cover your cough, don’t shake hands at the sign of peace, etc.

The important thing is to pray, even if you can’t get to Mass.

Seven Quick Takes--Second Friday of Lent

Linking up with Kelly!

I took this picture before Mass last week—I couldn’t resist the light.

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On the blog this week:

Virus Lent

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There’s a story about St. Teresa of Avila and Lent that I think is a propos. She once had a great program of Lenten penances planned. She was going to do everything. It was going to be great!

Then she was sick. For all of Lent. And she complained to the Lord about this. “Lord, I had so many great penances to offer you,” etc.

“This is my Lent for you,” He told her.

Looks like, no matter what our penances and plans were, we’re getting the Lent that Jesus wants for us right now.

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Like I wrote in my last post, I’m essentially living like I did right after my transplant—not really leaving my house, people coming to me. I’m not actually opposed to this, but what makes it scary for me is that the world around me is caught up in it, too. Whenever I’ve been sick before, there’s always been some sense of normalcy around me to cling to—school went on, I could go to the movies when I felt better, etc.

Now, nothing’s normal. Here, schools are closed starting Monday. The bishops’ conference of Ohio has dispensed us all from the obligation to attend Mass—and I wasn’t going to do that anyway, on the advice of my doctors. It’s just weird.

Last night after dinner I went and stood on my porch for a minute. It was a lovely night—the sun was setting, it was warm, I could hear the train coming through town. But it felt so eerily calm, like it does before a big storm.

All that to say, that it’s a weird time.

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If you’re in the same boat I am and can’t go to Mass, make a spiritual communion! And also try to keep the Sabbath holy—which we should be doing anyway, but if nothing else, this gives us time to really use Sunday as a day of rest. We all need rest right now! There are no sports to watch, and probably no sports games to go to. There’s nothing else. So let’s bring back the Sabbath! Let’s live it! (book recommendation: Souls at Rest.)

And also, let’s pray with our families! We should be doing that anyway, but let’s bring it back, because man do we all need prayer right now! (Book recommendation: The Little Oratory)

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If we’re doing book recs, um, mine? :)

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So while I’m here in my cloister I’ve made a list of things to do—writing, of course, so there will be ore writing here on the blog! I’m going to do the long awaited Outlander and Catholicism series, so be on the lookout for that! I’ll also be writing about illness and virtue—how we practice faith in times like this—and I’ll be doing a post on St. Damien of Molokai, who seems appropriate right now.

I’m also going to be baking a lot—mostly bread. I’ve been wanting to get in to the habit of making my own bread, and now I have the time to do it….and I also have time to knit like a crazy person. I have all this time…of course there is prayer, also. Lenten practices are still going. And cleaning the house, of course.

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I’ll also be watching a lot of movies, starting with the Hobbit series, because, why not, and also Knives Out, which I never saw in the theaters but am excited to watch now. I have to have some exciement, right?

Seven Quick Takes--Authenticity, Book Signings, Etc.

linking up with Kelly!

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From the blog this week:

“Quote Me” podcast and book signing on Saturday!

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So, authenticity.

In one of my interviews for Living Memento Mori, I was asked if it was hard to be so open about my health in the book.

“No.” I said. I didn’t even have to think about this. To me, it wasn’t hard, it was necessary. For me to be real, to really reach the reader, I had to be authentic. And that meant showing what really goes on.

I don’t show everything in the book. The book is limited in scope, to an extent, and so not everything is there, and not everything ever will be. There are things that are private.

But for the most part, I wanted to share how I really feel. I do yell at God. I get mad. I get angry. I throw things. Sometimes I act like a five year old. Like last night.

There were a lot of nit-picky things going on. I had whiffed an interview question. It’s Valentine’s Day and I’m single. And I really really really didn’t want to be a pincushion last night. I didn’t want to test my blood sugar before I went to bed. I didn’t want to shoot insulin into myself with crappy pen needles. I just did not want to.

I grouched a bit. I cried some. And then I did it. And I shared how I felt on Twitter.

Why?

Not for pity or sympathy of whatever. But because I want to be authentic with people. I want to be real. And while I do, generally, handle things with some degree of aplomb, sometimes I am just done. Sometimes, in the words of the musical Side Show, “I want to be like everyone else.”

I’m not.

So every so often, I have a breakdown, but then I just do it again. I feel a lot better today.

But I always want to be honest with my readers. I don’t want you to think I just sail along on a boat of Saint-like acceptance and Oh, everything is wonderful all the time!

It’s not. And that’s just fine. It’s OK to get angry. The key is to do it and then pick up again.

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OK, so, whew, got that done. :)

BOOK SIGNING TOMORROW! Catholic Women’s Conference here in town! YES, you can get tickets at the door!

I am signing during the breakfast break after Mass at the Ave Maria Press table, which is usually right by the eating area. Come say hi! I would love to meet you and sign your book!

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Next week I think two things happen—my Girlfriends interview with Danielle Bean goes live, and I think an interview for Aleteia (Catholic news/lifestyle website) goes up. I will link to them here and on SM and on the media page when they do!

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If you would like a signed book, email me and we’ll do it! They’re $20 and that includes shipping!

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OUTLANDER is back!

I love Outlander. It’s my favorite. I flew threw the series when I was having all my heart thythm issues in 2010—so much so that the clerk at the local B&N told my dad, “Does she know that this is the last one?” when I got to the (then) last installment.

The TV series airs on Starz and season 5 starts on Sunday—but if you have the Starz app, like I do, you can watch the season premiere now! Yay!

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Normal reminders to buy the book, sign up for the newsletter, etc. And please leave a review on Amazon if you’ve read the book! Thank you thank you!

Seven Quick Takes--My baby is two weeks old, upcoming events, knitting, and common sense

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It’s Seven Quick Takes time, YAYYYY!

Posts from this week:

Know Your Body, Meds Have Side Effects, and Being Your Own Health Care Advocate

Yarn Along

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The first post is important, I think. Yes, it’s long. But people need to know that you have to be your own medical advocate—you can’t depend on other people all the time, sadly!—and, yes, medicines have side effects that you may or may not get. I think a lot of people freak out at the idea that meds can cause bad things to happen to you, and yes, that is true. I lost my hearing because of meds. But, um, also, alive. It’s a trade off.

Anyway, it’s a long post but I think it’s worth reading as just a general part of adulting. Know your body!

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My book is two weeks old! Yayyyyy!

I’ve been doing a lot of interviews, getting lots of good reviews, and I’m really happy about all of that. If you want to get a copy, go here for all the options.

Also, if you buy it at Ave Maria Press, you can get 25% off! Yay! Enter MEMENTO at check out!

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I still haven’t checked out bookstores to see if my book is there, so hopefully I’ll see it “in the wild” soon. :) If you do, take a picture and tag me on Instagram!

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It’s actually going to snow tonight. We’ve had a pretty mild winter so the idea of snow is like, oh, cold? Snow? Winter? What is this madness? Oh well.

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I’m going to be at the Columbus Catholic Women’s Conference next weekend signing my book! Come join me!

If you want to read articles or listen to podcasts and interviews, I’m linking them on the “media” page under Living Memento Mori at the top of the site. So you won’t miss anything. If the story or interview can be linked, I will link it, and I’ll also post on social media (and here, of course) about interviews as they air!

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If you’ve read the book, you know about Rita, one of the best nurses at The Resort and a great friend. She and I are going out to dinner tonight to celebrate the publication, so yay!!!!

Have a good weekend!

How to be your own health care advocate

Today I’m going to share some hard won wisdom with you!

A friend of mine who also has CF said that we’re the “marines of health care.” And that’s true. We’ve had decades of experience working closely with doctors, hospitals, and medication regimens. And what we think of as obvious is not so obvious to the rest of humanity.

So I’m going to share some tips with you today to help you have better health!

I’m going to start with what is probably the most important tip:

Know your baseline.

What I mean by that is know yourself. How do you normally feel? What’s your general energy level? How much sleep do you normally need—and get—and what do you feel best with? (For me, it’s about nine hours.) How does caffeine affect you? (Or doesn’t it?)

All these things are your baseline—how you normally feel when you’re healthy and everything is chugging along just fine. This even includes stuff like how many times you normally go to the bathroom. (I’m not kidding. For a diabetic, this is important to know—and same with CF.)

You might not have thought about this before, but when you feel “off”, it’s because you’re unconsciously comparing your state to how you normally feel—aka, your baseline.

For example, my right hip tends to bother me on and off. It’s not a big deal, I’m aware of it, it’s been checked out. But if it suddenly became really painful, that would be an anomaly.

I knew that my blood glucose was really high, without even testing it, when I was dropping weight really easily and going to the bathroom more often, and carrying water around with me. Those are all not normal feelings for me.

Knowing how you feel—both physically and emotionally and mentally-is key to judging if something is wrong with you.

I knew that the type of insulin I was on over the summer was wrong for me—on a lot of levels—because I became a really awful person! I was snappy and lost my temper at everything and just hated everything, and this is not me!

So you have to know how you feel normally, so you know how you feel when you’re sick, or when something is off.

All drugs have side effects

The questions are: will you get side effects, and if you do, how bad are they?

People are generally shocked to hear that meds can cause problems. Yes, they can. Heck, water can cause problems if you drink too much of it. If you take too much Tylenol, your kidneys are not gonna be happy with you!

Every medication has side effects. Not every person will experience any, or all, of them.

But a side effect alone is not enough to not take the med.

For example: I used to take cipro for infections. People were always shocked. “Don’t you know that class of meds can cause tendon issues?!” they would cry.

Well, yes, I did (do) know that. But the thing is, I didn’t have a choice. This was what I had to take so, to be honest, I didn’t die.

I lost my hearing because of ototoxic meds. That was a choice we made, so I would not die.

Now, I can’t take cipro or any drugs in its class anymore, because my tendons are starting to get weird with it. I can’t tolerate it anymore. So that means I have fewer options for when I get sick.

I take prednisone daily. I have taken it for 15 years and I will take it until I die. It’s what’s causing all my blood glucose issues. But I can’t not take the pred. I tried to go off it. My body hated it. My joints, in particular, were not really happy. I take nexium, a proton pump inhibitor, even though I know it might cause bone issues and all sorts of other things, but reflux can lead to cancer and rejection, so, again—balancing act. I take immunosuppression meds, because I have to to stay alive, even though it ups my cancer risk by about a factor of ten, especially skin cancer.

Sometimes you start a med, have a rough few days, and then your body adjusts. Pre-transplant, I was on bactrim and cipro and a million other meds every day. At first, this was rough. Eventually, I got used to it.

The lesson here is, if you’re having side effect from a med, and it’s severe, then you need to talk to your doctor about it—especially if you’re having any sort of depression, anxiety, or suicidal ideation. Then, you must call your doctor IMMEDIATELY. This isn’t something to mess around with. Stop the med, talk to the doctor, figure out another plan! There are lots of meds out there! Find what works for you!

You have to be aware of how a med affects you. That goes back to knowing your baseline.

But yes, when you are taking a medication, your body might not like it. That doesn’t mean that it’s a bad drug. It just isn’t working for you, and that’s fine.

If you want to know the side effects of a med, they are easily google-able, or you can ask your pharmacist or your doctor. Every time I go to pick up meds, I get asked if I want to talk to the pharmacist about it. EVERY TIME. So, if you want to know, do that!

You have to know your medical history

You—as in, you yourself—must know your medical history. You must know what drugs you take and why. You must know the dosages. You must know what drugs you cannot take (if any). You have to know what is contraindicated for you.

For example: I can’t have MRIs. I can’t have PICC lines (it’s PICC, not PIC. Peripherally Inserted Central Catheter, folks.), because there aren’t any more spots for them! I can’t have zofran because it makes me vomit. These are all things I have learned and I often have to tell medical professionals these things. Because, they don’t know. Or they haven’t read my chart. (grumble grumble.)

My parents know these things as well. I have my med list and issue list on my phone so I can just whip it out in an ER or a new doctor’s office. It is a good idea to have someone else know your medical history so if you have to go somewhere in an emergency, that person can either say, yes, here’s the deal, or, “here it is on her phone.” (Now, for me, anyone who has read the book knows basically all of my medical history, ha!) I don’t expect people to be able to spout off all of it—except my parents, and they can do it—but I do have friends who know, OK, this is the deal. Especially when I travel with people, I have to tell them things that are relevant, like, me and the sun are not friends. I might have to stay inside for certain hours. I have to check my blood sugar. I might need you to get me juice. Etc.

But you have to be your own advocate. You have to say, I’m sorry, I can’t do that—and why. You have to say, I cannot take that med, or have that procedure, or whatever. (For Catholics, this also includes why you’re not taking birth control pills for contraceptive purposes! Not that you need to go all Humane Vitae on the doctor!)

Sometimes you have to talk doctors off ledges. Sometimes I get a new doctor who doesn’t realize I’m genetically anemic (I have thalassemia minor.) He’ll freak out when he sees my iron counts. But I’ve always been anemic, and we don’t do anything about it. It just is. I’m used to it!

And finally….

Be aware of change

Sometimes you’ll be on a med for awhile and you’ll be fine, and then you’ll notice…issues. That can happen. Sometimes a med builds up in your system and then it causes issues that were not apparent in the beginning. (Ototoxic meds, looking at you!) So if you have a chronic condition, you do need to evaluate. Again, know your baseline. Know what you’re being treated for. Sometimes I have to say, guys, this med isn’t working anymore. And we figure out something else.

Essentially, we all have to be aware of how we normally feel, what we’re taking, why we’re taking it, and our own health history. This enables you to be your own best advocate, which is vitally important.

SQT--A reaaaaaallly interesting week!

Linking up with Kelly!

And it’s gonna be fast quick takes today!

1. OK, so my body does weird things before big events. Jeopardy taping? Pneumonia. I guess for the book release month, my blood sugars will go nuts! But it’s OK, we’ve got them under control now.

2. But to get them under control, Dad and I spent 25 hours at OSU, in the ER/observation, so that was….fun. Best not discussed.

3. So I’m taking two types of insulin right now—a rapid acting one before I eat, and an “intermediate” acting one. These have both made my body much happier! There is sleep! There is energy! My cells rejoice in insulin!

4. But……sigh. OK, doctors’ offices. You must have a system for the hearing impaired to contact you. MyChart doesn’t always work. You must have ways of contact that a patient can do independently! I couldn’t directly contact my doctor’s office last Friday and that led to a really crappy weekend! Today, I can’t select my doctor on MyChart, so I had to contact my FABULOUS transplant coordinator, who will send them numbers that I emailed her! Guys, you can’t think that your lovely “secure system” is going to be the best way for people to get care if they’re hearing impaired! I RAGE ABOUT THIS.

5. STATE OF THE BOOK WICKET is here!

6. Maybe this is the time to show everyone the handy chart about emergency room vs urgent care usage…..

7. OK, that’s it for this week, go read the link at point 5! YAY BOOK! Two weeks to PUB DAY!!!!!!

Seven Quick Takes--The Medical Saga Endeth (we think)

Linking up with Kelly!

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So, here’s a spicy take I wrote this week about Medicare!

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And here’s the follow up:

So, we got the great folks at the CFF involved (they have a team that just looks at insurance stuff). They came to the same conclusion we did: that there really is no plan that covers everything, but that hospitals and doctors and I will make it work. (think Cinderella’s sisters: “I’ll make it fit!”) NCH doesn’t normally have a lot of Medicare people (because, it’s a, um, Children’s hospital), but….”they’ll take it”, says the finance office. (Thank you finance office!)

What I kept hearing from everyone was “well, we haven’t had to deal with this before.” Yes, I am the one that is trail blazing for everyone else. Future generations, YOU ARE WELCOME! I expect copious floral arrangements on my grave and Masses offered after I die. :-p

So, my hospitals are (sort of) covered. My main doctors—as in, the Big Three—are covered. The next issue?

The Prograf (or, THE GRAF).

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The prograf is the med that basically keeps me alive. It keeps my lungs from realizing that they aren’t actually, um, the factory setting. :-D

Now, when I was emailing my nurse about this, she said, “Well, we can always try generic.”

“What do you mean?” quoth I. “Generic doesn’t work for me!”

“Well, the formulation is a lot better now, and the hospital is even considering switching its formulary to the generic,” nurse said.

AH! Well, that would solve problems!

Or….would it????

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So I go to the insurance site. I plug in generic prograf, expecting to see massive cost savings and ease of access!

Hahahaha.

NO.

Generic Prograf is covered—but as a tier 4 med, meaning it’s like, non-preferred, no one wants to use it, and then I see, oh, step therapy may be applied.

Step therapy, for you new people, is when you have to try other drugs first before the company will pay for the med you want.

Yeah, we’re not doing that with the drug that keeps me alive.

So, what we’re going to do is go through prior authoritzation stuff, and we won’t have to pay out the nose, because I qualify for the Medicare Extra Help program (which is a great thing, so kudos there), so we can’t pay more than a certain very low amount.

So.

I have picked a plan. The saga is over. (For this year!)

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In other news, my tree is up, and Susan the Corgi is ready to celebrate….

And I think I’m doing buying gifts. That’s exciting. :)

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I had my first book interview on Wednesday with the delightful Fr. Patrick, O.P. We talked for forty-five minutes about all sorts of good stuff! The interview probably won’t be up until January, but when it is, I’ll let you know! I’ll be posting all media related to the book on the book’s page. . (And pre-order links, to a variety of retaliers, are there are well! Amazon US, Canada, and UK; Barnes and Noble; Indiebound….)

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Just a note about what Kelly wrote about today—how we tell the stories of the disabled.

One of the things I’ve noticed, especially as the practice euthanasia almost on demand rises, is that people don’t really understand life with a disability, or an illness. They think they do. They imagine the horrors of it.

But honestly, that isn’t the way it works.

When I lost my hearing, it was very gradual, over a period of years. It was gradual. Now, if I’d lost it all at once, yes, that would’ve been traumatic, and highly so.

Did I grieve losing my hearing? Um, yes. A lot.

But when it came to CF stuff, it was gradual. I still enjoyed my life, and I do enjoy my life, even with insanely stressful weeks like this week.

Being disabled makes things harder, but it doesn’t make my life worthless or less.

Why Medicare for All Is a Terrible Idea

OK, I know, some of you don’t like political posts.

And this is political, in the sense that, all the candidates who are pushing “Medicare for All” are not candidates that should be voted for, amen.

But, really, this is a look at how Medicare “works”—as someone who is currently going through the incredibly difficult work of selecting a plan.

Here’s why it’s hard:

1. I take a medication that must be the brand medication. I cannot take the generic because we can’t get what’s called a “therapeutic level” with it. The drug in question? Prograf. The drug that basically keeps me alive. So, I have to take brand name Prograf, which is expensive.

2. I see all the normal doctors people see—dentist, eye doctor, etc. But I also see special specialists. Meaning, doctors that are not normal run of the mill doctors.

3. I also see these doctors in two separate hospital systems—The Resort, and OSU (Ohio State).

So, we must find a plan that covers my meds, my doctors, and my hospitals.

Under private insurance, this was not hard at all. I just typed in names and meds, saw they were covered, signed up. Done. It took less than a half hour.

Private insurance did not like to pay for prograf, but it did. And if it didn’t, then the manufacturer had a Prograf saver card I could use to reduce the out of pocket costs.

Now, I have Medicare.

And here are all the problems.

1. There are plans that refuse to cover prograf. It’s not even in their formulary. It just says, “not covered.” Even though this med is basically what keeps me alive. There are many, many plans who do not cover it in any way, shape, or form.

2. There are plans that cover the med, but not my doctors. As in, one entire group of plans refuses to cover any OSU doctors. OHIO STATE! One of the top-ranked systems in the country!

These are, to put it mildly, big problems.

My dad and I have spent at least three days—as in, hours upon hours!—on the phone with people, looking at plans on line, until our eyes have crossed and our brains have melted.

Because a plan will cover some of these things—but then we’ll see, oh, there’s no out of pocket max. Well, that’s gonna get expensive, quickly.

They’ll cover my endocrinologist, but not my transplant doctor!

They’ll cover doctors, but not meds!

Or meds, but not doctors or hospitals!

Do we see the problem here?

Oh, and to make it even better, Medicaid will cover Prograf. But Medicare plans don’t!

And the copay card? Doesn’t work for Medicare patients. Only private insurance patients—when Prograf was covered by my private insurance!

This is insanity.

They’ll cover things like acupuncture and chiropractic, but not the med that keeps me alive. Not top doctors at top medical facilities. Nah. That’s too hard.

Also, it’s insanely complicated to compare plans. They don’t always list what doctors are covered, or what meds are covered. They don’t mention facilities. They put in stuff like Silver Sneakers—well, goodie, a free gym pass!—but not stuff that is actually life saving and vital!

How about we not cover gym costs, and instead, cover medications that keep people alive?

Oh, and. This is the good part.

Here’s an NYT story on this issue. Medicare will cover transplant meds if the transplant occurred while the person was on Medicare. NOT BEFORE.

This is the biggest piece of insanity I have ever seen. These are drugs that we know work. They are not new therapies, they’re not snake oil. They are proven. And yet, no, I’m sorry, we won’t cover that.

We have presidential candidates saying that this insanely complicated, twisted, insane system should be the one health care provider for the entire nation?

No.

Or, to be spicy, HELL NO.

Greetings From the Resort

Yes, I’m back in the Resort.

For new readers, I started calling Children’s Hospital “The Resort” once I started working, because all my vacation days ended up being spent here, and the name stuck.

On Thursday I started having a lot of abdominal pain. After I talked to the nurses at clinic, they mentioned that I had gall stones on my last CT scan that I had when I had the Awful, Nasty Stomach Bug. So back I went to the local ER (It’s run by a local hospital, so it’s a good one, not like some tiny little thing), where they ran tests and determined that I had….pancreatitis.

My old friend!

I haven’t had a bout of this in years, but once that diagnosis came in, I knew what I was in for. So Mom and I went back to my place, I packed a bag, and dad drove me to Children’s, where I am currently writing this.

The treatment for pancreatitis is: IV fluids, anti-nausea meds, and pain meds. That’s in. Blood is drawn daily to see how the lipase (a pancreatic enzyme) is doing—with pancreatitis this number is high. We want it to be around 50 or so, and today mine was 480 sometimes, which is still better than the 1600 it was when I was first admitted!

Giselle the Unicorn.

So, all in all, not too bad, except for being in a hospital, but even that’s not bad, because I don’t really get bothered. There’s no fancy treatment for this, just meds through an IV line. At some point I’ll try eating “clears” (broth, jello, etc.) and if that stays down then we’ll try more substantial foods.

So, that’s where I am right now. But big news coming later this week! (If you already subscribe to the blog, you know what the news is….)

Endocrinology (Or: Not Personal Failure!)

So the past two weeks have been sort of nuts, and hence why I haven’t written. So I’ll bring you up to speed and explain the title.

After my last post, I got a killer stomach bug, and I ended up in the ER. When you’re me—meaning, you take a lot of meds, you have blood sugar level issues, and you need to be able to keep things down—you don’t really “wait out” a stomach bug. (In fact, I learned today I get to give myself four hours before going to an ER for treatment.)

So after a day of nausea and 12 hours of vomiting (WHAT JOY) and abdominal pain, I took myself to the local free-standing ER, which is excellent. My mom met me there, Dad drove my car home, and four hours later I’d had IV fluids, anti-emetics (anti-vomiting meds), and pain meds, I felt a lot better, everything calmed down, and I got to go home. I spend Tuesday sort of out of it. Wednesday had a ton of energy and did laundry and some taking out of trash. Thursday, pretty back to normal—but I needed to take my car to the service place to get a tire patched. Friday, normalcy! Saturday, Harry Potter tea with my writers ‘ group (post on that coming), and I went to Mass for the first time in two weeks. Hallelujah!

So, that was last week. This week, the tire repair didn’t hold, so I had to call AAA to put the spare on on Monday, get the tire checked out Tuesday, to find out I need a new tire, which will be on my car tomorrow, which meant that I had to borrow my mom’s car to get to my endocrinology appointment today.

Honestly, I was really freaked about this appointment. I had visions of insulin shots multiple times a day and constant finger sticks and food restrictions and all sorts of evil things conjured by the word “diabetes.” I really, really, really didn’t want a heavy-duty diagnosis. I was freaked out.

I had a long appointment today (2 hours), where I met with great, wonderful, smart people, who went over my history and all my labs with a fine-tooth comb. They looked at everything. They asked about family history. The fact that my mom has five sisters, and that my grandma is almost 90 and in pretty darn good health, is great for my doctors because there’s a lot of female family history to look at when we’re talking about health indicators.

My endocrinologist thinks that what I have is a type of CF related diabetes (CFRD), which is not Type 1 diabetes, even though insulin is involved, and it’s not type 2 diabetes. It’s its own special thing. But what this did for me was release a big burden I’d been carrying around—the idea that I had done this to myself. That if I had done more or tried harder or whatever, that I wouldn’t have been in that office.

That’s not the case. Dr. W (the new doc) said that just about every CF person will get CFRD at some point, because we’re living longer. The severity will vary, but it’s probably going to happen. Throw in the fact that I’m on three drugs that mess around with blood sugar production and regulation, and, yeah. This was, most likely, going to happen.

We don’t exactly have a plan yet, because we need data, which will be provided by two things:

Me checking my blood glucose level at various times a day

Me wearing a continuous glucose monitor (CGM) for a week. This little do-dad checks your blood sugar every five minutes with a little sensor. So we’ll get tons of data, cascades of data! And with that data, we can make a plan.

The other great thing as that this doctor asked me if I was OK with this plan. That’s so important to me. I want to be OK with what we’re doing. And with this doctor, I do. I feel secure and I trust her to do the right thing to get things under control.

So even though I’m going to be doing a lot of finger sticks over the next few days/weeks, I don’t really mind. Because I don’t feel like a total failure, like I brought this upon myself. I didn’t. This is the result of being 37 with CF and a double-lung transplant. It’s the way it goes.

We get the data, we make a plan, and we move on.

Seven Quick Takes--the 60th of September

Linking up with Kelly!

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In case you missed it, here’s what’s been going down around these parts this week:

Simplicity Series #1—Reset Day!

Stitch Fix Box #8!

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The reason this post is entitled the 60th of September is because this month has seemed insanely long. Isn’t there a song called “Wake Me Up When September Ends?” That’s how I feel right now. It’s just been so long. And sort of crazy.

One of the big crazy-making things is that I’m in the middle of Doctor Roulette, which I really haven’t written about here, so I probably need to catch you up.

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(If you’re not interested in medical stuff, skip this and go to point four, where I talk about BOOK THINGS!)

So, being post-transplant, and being fourteen years out, is….interesting. Obviously, I am INSANELY GRATEFUL to be at that marker. I am. Never think I’m not. But at the same time, it’s a Brave New World of Medical Stuff, because it’s rare. So when things happen, there’s not a lot of research to go on. There’s just…..talking. And guessing. And seeing what works.

Essentially, all summer we have been messing with insulin, because my blood glucose levels have been off. (I”m trying to keep this as medical jargon free, but when I say this, what I mean is my A1c, not my BGLs. If you’re confused, I can explain in another post, so let me know if you want that much detail into my life!)

So my team decided to put me on some long-acting insulin.

But……that didn’t work. First, it didn’t lower my BGLs, which I was testing twice a day, and second, insulin is a hormone. That means it can affect lots of parts of your body.

For me, that meant—headaches. Not sleeping. Weight gain (DAMN IT), and insanely inappropriate mood reactions. If Big Ben threw an interception I wanted to break things. If someone parked next to me at the supermarket, I became incandescently angry.

This is not appropriate.

And the scariest part for me? Forgetting things. Words. Ideas. What I was doing. This is not good. I rely on my brain, and words are my trade. I can’t be forgetting them! I need to be mentally sharp.

(But you’re never mentally sharp, Emily, says the peanut gallery….)

I did some digging and found out that when you have too much insulin—as in, you have WAY too much, and your body doesn’t need it—this is what happens.

And this is the problem. My body is weird. Not just the transplant weird, but weird for a CF person. I’m what’s called “pancreatically sufficient”, which is rare. It means my pancreas works like a normal person’s, not like a CF person’s. I don’t need to take enzymes to help digest my food, because my pancreas does it. I never had CF related diabetes.

And my A1c starting rising once I hit menopause—so there’s probably a connection there as well.

So, long story short, my team is sort of confused, and I’m seeing an endocrinologist the day before Halloween. That’s one reason I haven’t been writing as much this month, because things have just been crazy, but also my body has been through a lot, and I’m trying to be nice to it. Which means, chilling out, after all the non chilling out. :-P

There are some other issues, too, mainly that I don’t have a great track record when seeing endos, because they look at me and go, you’re really messed up, what do you want me to do about it?

But anyway, that’s at the end of October. Yay.

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in the meantime!

BOOK THINGS!

People are starting to ask for interviews, which is….weird. I mean, good, but weird.

The cover is 99% done. I’ve seen it. I can’t show you yet. If you want to be the first to see it, subscribe to the blog!

It’s really pretty, I like it. :)

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Hockey season starts soon and this makes me very happy!

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I am going on retreat next week, so if you have prayer requests, I am honored to take them with me! Drop them in the combox, or use the contact page.

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If you haven’t seen the Word on Fire team’s newest entries in their Pivotal Players series—Fulton Sheen and Flannery O’Connor—I highly recommend them! They’re great! Flannery is a really important influence for me, in how to live as a Catholic and a writer, and I write this quote from her at the beginning of all my journals:

I feel that if I were not a Catholic, I would have no reason to write, no reason to see, no reason ever to feel horrified or even enjoy anything. I am a born Catholic, went to Catholic school in my early years, and have never left or wanted to leave the Church. I have never had the sense that being a Catholic is a limit to the freedom of the writer, but just the reverse. … I feel myself that being a Catholic has saved me a couple of thousand years in learning to write. (The Habit of Being *)

So I love the Flannery film. It was also nice to learn more about soon to be Blessed Fulton Sheen—I had read some of his books, and I knew of him, but the film does a great job fleshing out what I knew.

(Also, in a nice twist, a college friend of mine composed the music for both films. Go Sean!)

And I really don’t think we can improve on Fulton and Flannery, do you? :) Have a great weekend!

*==Amazon Affiliate Link

Doing The Best You Can With What You Have

Under the Wave off Kanagawa (Kanagawa oki nami ura), also known as the Great Wave, from the series “Thirty-six Views of Mount Fuji (Fugaku sanjurokkei)”

I was talking to a friend of mine the other day, who, like me, has had some health problems. And we were talking about how the things you do to save your life can later come back and have unplanned consequences.

“I’m dealing with that right now,” I said. We talked a bit more about how frustrating this is—but then we asked, Would we have changed anything?

And the answer is, probably not.

So I thought I’d write about this.

*

After my clinic visits, we always have to wait for blood test results. One of them that we’ve been watching lately is called the A1c, which I talked about in the last post. Basically, it’s a batting average for your blood sugar. And ever since I entered menopause it’s been going up….and up….and up.

This is not good. The more sugar is in your blood, the more that can lead to lots of problems. Problems that I don’t want.

This isn’t CF related diabetes, because my pancreas still works. (I don’t take enzymes to digest my food, so that’s how we know….) But at the same time, my body is clearly becoming insulin resistant.

I’ve been on steroids for 14 years. So the thought is that steroids + menopause=unhappy A1c.

Now, I can’t go off steroids. I’m on a low dose—5 mg a day. There is a 2.5 mg dose. And I might try that. But the problem is, my body has adjusted to them, and my joints, especially like prednisone. A lot. I had CF related arthritis before my transplant and that is helped a lot by the prednisone. I notice when I miss a dose. So when I tried to go off prednisone a few years ago, my body said, “nope.”

Why am I on prednisone? Because I had a transplant.

Which saved my life.

But we know that prednisone has a lot of side effects.

*

Another area where side effects come to play? Cancers. We’ve talked about that a lot here.

And, not pred related, but med related—my hearing loss.

So, these are all things that have happened as a result of staying alive.

But—what were my choices?

Well, to take the meds, or die. Really. It was that stark, in a lot of cases.

So I decided to take the meds. And live with the side effects.

And that can be sort of sucky, to be honest. Because you do things to save your life, but then…there are consequences, and you have to be ready to deal with those. It’s a long-term gamble.

But, and I said this to my friend, we do the best we can with the information we have. We can’t think about 5, 10, 15 years down the road when we’re looking down the barrel of the gun right now.

If you’re in that situation, I know how you feel. I know it’s hard not to google and think about the future. But really, in my opinion, the best thing to do is to talk to your doctors, see what the options are, and then go with what is best—for you, for the situation, for what needs to happen to achieve a good outcome.

Does that mean you’ll be thrilled with what you have to do? Well, no. I’m not thrilled that I’m injecting myself with five units of insulin every night. But it could be worse.

This is what I have to do to stay alive—to see year 15, year 16, year 17….post-transplant.

Now, are there things I won’t do? Yeah. I’ve always said I wouldn’t go for a third transplant. That, to me, is a bridge too far.

But right now, I take the insulin, I adjust my diet, and I do the best I can with what I have.

Day In the Life: Yearly Transplant Testing

I thought that I’d give you a little glimpse into a day at clinic, but in order to get the most bang for your reading buck, I chose do chronicle a day where I do yearly testing—as in, clinic, blood draws, X-rays, CT scan, and a DEXA (bone density) screening. So come along with me on Monday’s trip….

6:30 am: Alarm goes off.

7:20 am: Out the door, to the hospital!

It’s not raining! Yay!

The hospital is only 12 miles away form my place, so that makes it easy to get there, but morning rush hour can be a beast. Fortunately, it’s not bad, and I get to the parking garage at 7:45, after being asked for the nth time if I’m a visitor. No, I am a patient. Deep sigh.

Excellent parking!

The hospital has a nature theme, so there are lots of animals and other nature-ish things around. In case you can’t tell, those big green things are acorns.

7:50: Heading to Crossroads Registration

dooooown the long hallways.

I passed this bunny on the way in:

Registration is in the middle of the hospital complex and sometimes it can be a pain. But there was a nice lady behind the desk, the kiosks worked, I had my wrist band, and was on my way to infusion for my first appointment….

Up we go!

The tower building used to be the main hospital—I’ve spent a lot of time here. :) The fourth floor (4AE) where infusion is is where the adult CF floor used to be. It’s where I almost died and it’s where I waited the night my transplant came.

The 4th floor is also home—or was—to the PICU. So yeah, the fourth floor has lots of great memories. (Seriously, some are good. Most are….not.)

It does, however, have a good vending machine.

Anyway!

8:00 Infusion

In the waiting room—Muppet Babies on TV.

Great view, huh?

Since I was early, I got taken back early—yay!—into one of the rooms. Like I said, these used to be patient rooms. Now they’re smaller. Most of infusion is separated by walls and curtained off areas, but since I’m a transplant patient I go into an actual room.

Sometimes infusions last for hours. Really, the reason I go to infusion isn’t to get meds, it’s to get my port accessed for blood draws. So the room has a bed, and the other areas have recliners, if you’re staying. I’m not. This is an in and out thing.

My great nurse comes in and sets things up….

Fortunately no vitamin levels today, so only three tubes. We could not get that out of my veins. So—port!

The blurry part is the strips that have my ID number on them and get attached to various things when the blood goes to the lab.

And yes, everyone must wear PPE—personal protective equipment—when they access the port. Gowns, gloves, masks, and hair nets. It’s like we’re doing surgery here.

So, we’re running ahead of the game, but then my port decides to be dumb, so we have to wrestle with it for ten minutes, but finally it cooperates and we get the blood. Then we flush the line with saline and heparin, and de-access me. Yay!

I am free to go back down to the main floor!

Hallway out to the waiting room.

Doooown we go.

This used to be part of the old ER—the parking lot to the right is where we dropped me off the night of my transplant.

(Bunnies ahead!)

This used to be “main” radiology, and the little hallway you see above used to run between radiology and the ER. This also used to be the main hospital through way—if you went to the end of this hallway you’d reach the main lobby. But I digress!

I’ve been coming to this part of the hospital for twenty-six years. It’s very familiar.

As is this hallway, but now they’re changing it! I don’t know what to do ! :-p

8:40 AM: Chest X-ray

So I have my probably five millionth chest x-ray (that’s a conservative estimate), before which I ran into my post-transplant buddy Amber, who is also going to clinic. It’s always fun to see friends!

So, out of radiology, heading toward clinic, and passing the fish tank and the satellite gift shop.

(Yes. There are two gift shops)

Sharkbait!

Past the coffee bar….

To the elevators, and up to good old fifth floor CF clinic! :) Also been coming through this door for 35 years. :)

9:00 AM: Clinic

This is where I spent the bulk of my time. On a “yearly” clinic day, everyone comes in: the doctors, the dietician, the social workers—and things get a little more in-depth. (Not so much on the doctor end, since I see him every three months.)

*The dietician asks me to talk about what I normally eat: meals and snacks. She’ll then give suggestions. Right now, we’re dealing with weight loss and the silly A1c levels (more on that in a bit), so we want to make sure I’m eating the right combination of things. She made some suggestions, I asked some questions, and it took about a half hour, probably. I really like the dietician so that helps. :)

*My Doctor. I see one of the two docs on the team every three months. This time, he was happy with how I was doing, and we talked about the A1c thing.

Basically, the A1c is a test that looks at how your blood processes sugar all the time—it’s like a batting average. It’s how much sugar “sticks” to your red blood cells. For normal people, you want it to be under 6% For post transplant people, you want it to be in the low 6%, because the prednisone we’re one messes with how our bodies process sugar. So we aren’t aiming for normal people normal, but abnormal normal. :)

I had been testing my blood glucose levels (BGLs) for a few months, and my doctor didn’t think my numbers were really all that bad. (Again, we’re looking at abnormal normal here. Not normal people. ) He did say that if my A1c was up, then we’d probably have to start me on a low-dose, long-acting form of insulin. It wasn’t really because I hadn’t done what they asked—I lost weight, I’m being more active, and I’m checking my BGLs—but because I’ve been on prednisone for 14 years, and I’m in menopause, which, as we know, messes with hormones like nuts.

But my Chest X-ray looked good, and my PFTs were up a point, so lung wise, things are great. Sinus wise, things are great. I’m seeing all my specialists like I’m supposed to and I keep clinic informed of things there.

My doctor wanted me to do some other PFTs so I had to go back to the lab, but we’ll get there in a second. :)

*Social Work: Normally, they just come in and ask how I’m doing and give me a parking token. Since I’m working with some insurance insanity right now, we had more to talk about and they are going to look into some things for me which is massively helpful. So I was happy!

Finally, Pulmonary Function Tests, aka, PFTs.

Normally, when I say I’m doing PFTs, what I mean is I’m doing spirometry. Aka, the thing where you sit down, put clamps on your nose, and breathe in through a tube connected to a computer. You breathe easily for a few breaths (for me it’s two) and then on the third you take in a huge breath, like you’re about to go underwater, then blow it out fast and hard.

You then get results that look like this:

swirly bit is blocked out personal info. :)

Now, this is in liters, and I generally look at percentages. As of yesterday I had about 54% lung function, which is good for me, and that’s the “moderate restrictive defect” part. It’s not anything to worry about, it just says that at the bottom.

I also did two other kinds of tests which check how gases are diffused in my blood and other breathing related things. Those were also fine. So yay there.

11:00 Finished clinic, back to radiology!

I finished in clinic, said goodbye, and my nurse said she’d email me with follow-up things. I then headed back down the elevators,

past the fish….

And back to radiology.

This was a bone density scan that did scans of everything—we did hip focus and lumbar focus, and then the whole body. This is important because prednisone (don’t we love it?!) also causes issues with bone density and causes osteoporosis. Fortunately my bones are AWESOME. I hope they continue to be awesome—I haven’t gotten these results back yet.

FINALLY, the LAST TEST!

11:45 am: Chest CT

so heading back through the center of the hospital, to the Magic Forest!

And into the CT room:

This is just a regular old CT scan of my lungs to make sure we’re not missing any small things that might be happening that regular X-rays don’t pick up. Easy peasy.

So I was free, and said goodbye to the bunny, at around 12:15!

I was really hungry at this point, because I’d only had a little breakfast—you’re not supposed to eat a lot before clinic visits in case something scary shows up in testing and you have to have a bronchoscopy that day. (Yes, that has happened to me before.)

So I was hungry and had walked about a mile and a half, not kidding, in the halls of the hospital. I hit my move goal for the day at 3 PM, so I knew that I’d get a decent workout on this day, lol.

This used to be a longer day—there used to be more tests. So I’m fortunate that this was a pretty quick day and everything went well, except for the silly port being stupid! :)

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!)

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? :)