Eighteen

This is a photo of me and my godson, Ryan. (He’s also my cousin.)

I was fifteen when he was born. When I received my transplant, he was seven years old.

I loved him insanely. I kept his photos in my locker, and my friend Amilia remembers that we used to call him “baby.” (I still love him insanely, don’t get me wrong. The insanity of love does’t wane.)

He’s 25 now. He works in Pittsburgh and has a degree in economics. He’s learning Japanese.

When I was on the list, when I thought I might not get to see him grow up, one of the things I wrote during that time was a letter to him—things I wanted him to know.

Fortunately he never received that letter, because I did get to see him grow up. I saw him lose teeth, make his first communion, heard his voice break and his body shoot up in height, and I went to his high school graduation party and I know him as an adult.

Patty is three years old. When I had my transplant, her mother (my cousin) wasn’t even married. Neither were my siblings.

My nieces—sweet Madeleine and Hailey—weren’t even possibilities at that point.

Melanie and Madeleine (aka, Maddie, Baby Bear, Sweetheart, Baby Maddie….)

Bryan and Hailey (aka, Hails, Hailey Bug, Baby Bear, Munchkin, Baby Girl…)

Cheering on her favorite baseball player with Mommy!

There are so many gifts. So many things I didn’t even think of when I was twenty-three.

So many things I would have missed.

For some reason, I didn’t miss them. I got to experience them.

“I am, among all men, most richly blessed.”

---

Please consider becoming an organ donor, so that more families like mine can be blessed.

Also, my annual signed book sale is on! Get a signed copy of my book, a specially designed bookmark and prayer card, and free shipping, for $15! Email me with your address.

Mid August Daybook

Flowers at the local French cafe

Outside my window::

Sunny and breezy—great late summer weather.

Listening to::

The Rings of Power soundtrack. I’m very excited for the show to start on September 2!

Wearing::

crops and a gray t-shirt—a uniform of sorts for me.

Grateful for::

Conversations with Di, Patty, and Johnny.

Good Echo results!

new knitting projects

Pondering::

Functional fitness. As I wrote in the last daybook , this is important in just keeping up the house and doing regular things, but it’s also important in giving my body the tools it needs to “get through” things. If I’m stronger at the outset then I have less to lose if/when I get sick.

Like right now, I have a sinus infection. Wheeeeeee again. I’ve had a lot of them sine 2020, and that’s unusual for me. I had a long-overdue sinus surgery last December, but that didn’t seem to solve the problem the way it normally does.

So right now I’m on Cipro, which is a great, super powerful antibiotic which will clear up the sinuses—but will also mess with my tendons. So that is a bummer when it comes to the whole “functional fitness” thing, because I really do not want to rupture a tendon.

This means that my workouts have to change—I can’t be doing things like treadmill workouts. So I’m doing gentler things, but things that my body still needs, like yoga/stretches for my body, especially my legs (because my legs get really tight), and things I can do that don’t put a lot of stress on my knees or Achilles’ tendon, because these are the areas that tend to get grumpy with me. I’ve gotten some permanent injury to my right knee because I didn’t listen to my body when I’ve been on Cipro, so I don’t want to repeat that.

It’s a fine line, but it’s one that I have to figure out how to manage, and I think I have a good plan for the next two weeks that I’m on this medication.

Reading::

The Silmarillion,* The Book of Lost Tales (Part 1),* (yes, lots of Tolkien right now!) The Crossing* (my parents are really into this book series and so I’ve started reading them too), and Memories Before and After The Sound of Music.*

In case you’re wondering how I read multiple books at one time—I was an English Lit major in college (and Political Science), so I’m very good at reading multiple books at one time! I’m reading Silmarillion almost like I’d read it for a class; I take it slowly because there are a lot of names and places and things to remember. I try to read 1-2 chapters a day. The other books I’m not reading like that. But I’m very good at juggling books and plot lines.

Creating::

A '“stupid easy” shawl with some of the gorgeous yarn I bought on the yarn crawl!

The pattern is Casapinka’s “Woven”, which I had bought and forgot about in the wilds of my desk, but as part of the house reorganizing/decorating project, I was going through papers and found it, and then decided it would be perfect for this yarn. Ravelry notes here. I still have two shawls to block as well.

(Yes shawls are my favorite thing to knit. They’re so diverse and you can have o much fun with yarn and technique! BUT color work is also really fun. And I’m liking cowls. So cowls/shawls are my favorites right now.)

To live the liturgy::

Today is the feast of St. Bernard, Doctor of the Church and Abbot. Did you know he wrote “O Sacred Head Surrounded” (or “now Wounded” in some translations)? I didn’t! I love that hymn. He’s also featured in Dante’s Paradiso. (The last part of the Divine Comedy. If you haven’t read it, I recommend it!)

Around the house::

Still going on the big project but things are coming together! Yay!

From the kitchen::

I will make another load of Sourdough sometime this month to incorporate Diane’s suggestions to my last attempt! I’m actually really excited. I need to feed Sammy the Starter today.

Plans for the week::

All day doctor extravaganza on Monday for yearly testing. WHEEE. Since I’m on Cipro I won’t have to do the six minute walk, which I sort of hate anyway, so that’s a plus!

Travel Tips: How I Travel With All My Medication and Medical Stuff!

I don’t leave home without my pink InPen, obviously. :)

A lot of people assume I am a “bad packer” because I always have to check a bag—I can’t do any trip with just carry-ons. That’s not because I bring a lot of stuff for fun—it’s because I have so much medical stuff to pack! Traveling is easier now that it was pre-transplant because I don’t have to bring machines with me, like my aerosol machine and nebulizers, and all the parts that go with that. But I still have quite a few things that I have to take with me, so I thought I’d give you my tips and strategies in case you ever need them.

The first thing is my big bag of meds. I probably started doing this about 10 years ago. I keep all of my medications (except my vitamins) in a large zip top bag. (I use one of these). That way I can just grab the bag and go (this was actually done in case of random hospital admits. My parents would be able to just grab one bag and take it to the hospital without wondering if something was left behind.) When I travel, I do put my supplements and vitamins in here, as long as they fit. If the bottles don’t fit, I just put them in plastic bags. The reason I take the bottles along is in case I need a refill or something happens (always be prepared!), I have the pharmacy bottle and people can see exactly what I take. It’s also good in case I get stuck somewhere longer than I had planned; this way I have all my meds with me at all times.

Once I’m at my destination, I don’t have to carry my meds around with me, because they’re morning and evening meds, so I just take them with breakfast and whenever before bedtime is at my destination. (In Denver, I took them whenever we got back from my sister’s house.)

The big bag of meds on my insanely covered kitchen table!

Second is my insulin and other diabetes things.

I always carry in my purse my glucose meter (just in case my continuous glucose monitor has a hiccup) ,as well as backup insulin (both types), pen needles, and my emergency glucagon kit (this is “emergency glucose”, basically.) I keep all of these things in one of these pouches and that pouch always lives in my purse. I also try to remember to keep candy in this pouch in case I need it. I make sure my glucose monitor has lancets and plenty of (non-expired!) test strips. I will also keep two cartridges of short acting insulin for my inPen in there when I travel, so if I had to reload it when I’m out I can do it easily. (The inPen is the pink item in the top picture.)

Here’s what goes in the blue pouch: Pen needles, backup insulins, emergency glucose (in the red case) and my glucose meter. There are more pen needles inside.

For traveling, I have to bring more insulin. I take two kinds: short acting (right before meals) and “intermediate acting” that lasts for about 10-12 hours. These live in the refrigerator until I need them. When I travel, I take the supply I need and put them in one of these pouches* (do you see a trend here with pouches?) These pouches are great because you don’t need ice or ice packs! They work with cold water and keep insulin cold for up to 45 hours. These are fabulous and they come in tons of sizes!

So what I do is prep the pouch the night before and then stick my insulin in there. I pack waaaayyyy too much insulin—I’m getting better about that!—but I’d rather have too much than not enough. It stays in a refrigerator once I get to my destination (if you don’t have a fridge, you can use the pouch—there are instructions for continual cooling included) and then I prep the pouch again the night before I leave. When I get home, the insulin that I took with me is first in line to get used at home, so that way there’s no issues with waste or things not being cold. (My insulin can be used at room temperature as well, as in, it’s not “bad” if it’s at room temperature. I just use it first. But not all types are like this, so check yours!)

The other things I pack are: keto urine test strips, and a backup continuous glucose monitor, in case the one I’m wearing comes loose or gets accidentally removed. I also pack alcohol wipes. I put the monitor and the alcohol wipes in their own plastic bag and hopefully I won’t need to use this, but better safe than sorry!

The third thing I pack is candy or something that will raise my blood glucose if I need it. This is usually candy or a non-diet drink (like regular Gatorade that I’ll pick up at the airport if I’m flying). If I’m staying with someone I usually ask them to get me regular orange juice just in case I need it. (Or really any kind of juice, orange juice is my current favorite.) For the trip to Denver I put a few boxes of Sour Patch Kids in my luggage and in my carry on backpack, and picked up some additional candy and Gatorade at the airport. (This is also useful for taking my meds, since some of them are really nasty if taken with plain water! Steroid, looking at you.)

You can see, this is quite a bit of stuff; it all goes in my carry-on, which also holds my makeup and anything else I don’t want to risk being lost (like jewelry) and my chargers, which I need for my phone, but also my cochlear implant charger. My extra CI battery goes in my eyeglasses case, which is also in my carryon, as well as my contacts. (I have two CI batteries; one that is the backup and one that’s being used. I try to rotate them daily so they don’t wear out quickly. A battery can last up to 24 hours when fully charged.) In case you’re wondering, I use an LL Bean backpack as my carry-on, because it has lots of compartments and it’s extremely sturdy.

And that is all the medical stuff I pack! Whew! I really find that the pouches are great in keeping my organized, so I highly recommend those. I don’t use any pill boxes because I can remember what I need to take and for me it’s easier to just dole out the meds individually each day. This is my system, and it might not work for you, but I hope that some of these times are helpful!

Seven Quick Takes: Links! Health! Patty!

I know that’s not a sexy title, but….

I’ve been writing about COVID related stuff a bit in the past year. And as we start to talk about masks and lockdowns again, I thought it would make sense to have an index post about COVID-related things.

The reason I feel this way is because I have, not to brag, a lot of hospital experience. I’ve been a patient in a hospital for many years. I know hospitals. I know lung stuff. I know about risk assessment and personal health.

So I feel like I should share my insights with you, for whatever you think they’re worth.

-1-

COVID, antibodies, and transplant life: posted 5/24/21

This one is a bit of an outlier because it deals with transplant a little more specifically, but it also talks about acceptable risk a bit as well.

-2-

Prudence, Acceptable Risk, and Medicine: posted 5/10/21

This was originally going to be a two-parter, but I haven’t written the second part (yet). The first part deals with exactly what the title says—the fact that every medical “intervention” (including taking Tylenol) has risks associated with it, and it’s our job to assess risks for ourselves.

It also talks about how people are in hospitals every single day, in ICUs every single day, and on ventilators every.single.day, because this is totally forgotten in reporting.

-3-

Hospital 101: posted 11/23/20

Basically: “yes you can be in the hospital and not feel terribly crappy.” And, “No, being in the hospital does not mean that you’re going to die.”

-4-

COVID and lung function: posted 7/7/20

Yes, you can recover lung function after being really, really, REALLY sick! If my crappy old CF lungs could do it, yours can too!

-5-

So that’s the listing of the “big” COVID posts. I have some other things scattered in Quick Takes and various places, but these are the long forms, so to speak. I hope you find them helpful.

Here is Patty as reward! :)

She has EIGHT teeth! And can say cheese!"

-6-

I went swimming for the first time in two years! YAY! It felt so great to be back in the water!

-7-

And finally I wrote two posts this week! ICYM them:

An awesome clinic visit

The state of the Writing Wicket

Sixteen

I have now had my new lungs for sixteen years. They are old enough to drive. :-P (Actually, my donor was a 50 year old woman named Suzanne. So these lungs are now 66 and still kicking!)

The 16th year was hard. We had COVID. We had my transfer to a new center, which….to be honest is still sort of irritating, because adult hospitals just really do not care about their patients’ time in the same way a children’s hospital does. Kinks are being worked out. The diabetes stuff was….rough, not gonna lie. But also, huge strides have been made which is great.

AND there was Patty!!!!!!

And getting to meet Patty!

Even in the midst of worldwide pandemic, there is still joy. There is joy everywhere. Not every day, maybe. I’ve had days that were definitely not joy filled. I’m not a perpetual ball of sunshine. I know that there are days, weeks, months, years, even, that are hard sledding.

But the key is to find the moments that are good (or, less bad).

There isn’t a whole lot of data for post-lung transplant folk like me. the data sets I’ve seen go to 10 years, and there aren’t enough patients to talk about 15 year, or 20 year, data. I’m making data.

I love turning the pages on the calendar. I love having birthdays. I love getting older because I wasn’t supposed to get older. But because of Suzanne, my donor, I did.

And I am grateful and incredibly happy about that.

Seven Quick Takes--Second Friday of Lent

-1-

Hi, everyone! How was your first week of Lent?

Mine was MEH. I thought I could get away with king just little social media. No, I really can’t. I need to be strict about it. So I’m really going to try to only use it for book/writing things and some random updates on my personal page on FB. Because man I use way too much SM. So. Time for timers!

In other news, we WILL start Stations tonight! 7:00 PM EST on my Facebook author page!

-2-

Patty and her family are safe and warm in Texas. :)

Patty was supervising her mom’s yard work when this was taken. :)

-3-

I got my first COVID vaccine!

Yayyyy! My parents and I all got it at a drive-through clinic here in town. It went really fast and really well. I did have a sore spot the next day, but it was minor. Didn’t stop me rom doing anything or sleeping on it.

-4-

I had clinic on Monday. It was….special? I mean, not bad special. I get to go six months without being seen which is the longest I have ever gone in my life between pulmonology appointments, so yay! And my old transplant coordinator at Children’s is now at the New Resort, double yay!!!!! As I told my doctor, “We’re getting the band back together!”

But in some non-yays, I am learning the ways of the new place. The first thing being, they will not take you early. Doesn’t matter if they have time, doesn’t matter if the doctors are ready. They will not take you early. So I now know I don’t have to get up as early as I did, because if I’m there early I just….sit there. Until it’s my turn to be called.

Actually, you can tell this hospital is not used to people being on the ball, because they say they want you there a half hour before your appointment time. I’m assuming this is because people tend to be late. I, however, am almost never late. If I am late, I am probably dead. :-p So, now I know!

Also in the lab, I had a freak out with the tech because she saw all the orders for me in the computer—we were doing vitamin levels and that always require like 40 orders—and she freeeeeeaked. “Well, what do you normally have drawn?! There are orders from two doctors in here! Who do I call!? What labs do you normally get drawn?”

I do not know. I tell her that. She asks me again, in increasing levels of panic.

We did this about four times.

Then I had to give her the clinic number so she could….call and ask them if they really wanted all these labs.

It was insane.

If it’s in the computer….it gets drawn. Sigh.

But, everything was good. PFTs were good, a random treadmill test was good, everything was good. Everyone is happy. We’re working on getting my colonoscopy scheduled….what joy. :-p (it’s a little tricker for me because we have to use the port, and we have to make sure I have lots of anti-emetics (anti-nausea) drugs on hand because my stomach hates the prep. We’re talking projectile vomiting hates the prep, folks. )

-5-

The nice thing about this clinic, however, is that it’s close to a French cafe and a local yarn store! So I went to the yarn store and picked up a really quick project—the yarnicorn cowl.

Knitting in clinic!

Done the next day!

I’ve never used a really chunky yarn like this before and it was SO FUN. It’s from Knit Collage, if you want to check it out. I definitely am going to use more of this in the future! (I used the Lagoon and Nomad color ways here, in the Cast Away yarn.)

-6-

Quick ad break! If you haven’t picked up Living Memento Mori, please do so? Support your local Catholic author! :) I also have a patreon, with memberships starting at a buck a month!

-7-

Next week’s yarn along is going to be AWESOME because…..the cardigan is finished. But more on that next week!!!!!! :)

Seven Quick Takes--the 60th of September

Linking up with Kelly!

-1-

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!

-2-

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.

-3-

(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.

-4-

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. :)

-5-

Hockey season starts soon and this makes me very happy!

-6-

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.

-7-

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

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.

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.

Thirteen

The annual transplant anniversary post tends to change, in form and shape, every year. This year, a lot has happened: 

Catholic 101 was published in November (buy it here--on sale until Friday!) 

My brother got married

(c) Erica Kay Photography , http://ericakayphotography.com/home

My sister got engaged

Melanie and Jason (her fiance) leaving Bryan and Sarah's wedding (c) Erica Kay Photography, http://ericakayphotography.com/home

I saw the Stanley Cup with my parents

I went back to Williamsburg and Duck 

I started writing and editing for Take Up & Read. 

I celebrated my grandma's 88th birthday with my family

I knit my first shawl. 

None of these things would've happened without my donor. 

It can be tempting to look at life in terms of productivity, what we do,  and I'm not trying to list my productivity. Look at what I've done! Rather, it's more like, these are things I never would've done, enjoyed, even conceived of, thirteen years ago. These are things that never would've happened. 

I would've missed my brother's wedding. 

I never would've met my new future brother-in-law and sister-in-law. 

13 birthdays, Christmases, holidays....all those things would've passed without me. 

In general, women post-transplant don't do as well as men. There isn't a lot of data, period, on women who have survived a transplant longer than 10 years. I'm in new territory here. 

I try not to think about that. 

Instead, these things I get to do are gifts, even when life is sort of sucky, because life is never totally perfect. I mean, things are overcome, yes--but just because something is overcome doesn't mean that everything is suddenly perfect. It doesn't work that way. 

Someone said, life is full of suffering, but it is also full of the overcoming of it. 

And that about sums it up. 

Thirteen years of overcoming is pretty good. 

With the cousins on my mom's side at my brother's wedding. This is not all of them, btw! 

To be an organ donor, go to donatelife.net/register

Stop waiting around

Trivia night victors! 

Guys. Stop waiting to do things. 
I see this a lot with transplant people--or people with CF--but also with people who are just nice, normal people. 
"Oh, I'll wait until later to do that."
"Oh, someday...."
"Oh, it's just not right right now."
Guys. 
If you want to go to school, go. 
If you want to learn something, learn it.
If you want to bake cookies all day, do it at least once.
If you want to learn Spanish, sign up for Duolingo. 
STOP WAITING.
Stop saying, Oh, when this happens. 
Nuh uh. 
DO IT NOW.
Yeah, sometimes it's not plausible. I get that. Sometimes you have to save money. I get that too. 
But then DO IT. Save the money. Make it happen. Dedicate yourself to it. 
Don't wait. 
Don't use your body as an excuse not to do things. "Oh, I have crappy lung function, I can't go to school, I can't work, I can't do anything by lie here and watch Netflix."
I've been there. Before my transplant, I slept for 13 hours a day. Seriously. If not more. When I was "awake", I was sort of zombie-fied. And that's what happens when you're close to death. 
But EVEN THEN--I went to work. I went out. I saw my family and friends.
Yes, when life changes, more opportunities can open up. 
But you will lose your life waiting around for things to happen. 
So STOP IT. 
Learn the things. Do the things. LIVE YOUR LIFE. Even if you're almost dead, you can STILL LIVE YOUR LIFE while you have it.