Seven Quick Takes--the June Finish Line!!!!

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OK so first, here’s a lovely interview I did with my friend and fellow author Andrea Green Burton!

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Oh my goodness folks. It’s been Doctor Month around here, but I am so glad to be done. Done done DOOOOOONE!

A picture of the New Resort!

Behold, the NEW RESORT.

My new clinic is beneath the walkway bridge you see in this photo on the left. Hi clinic! :)

So, last week I had my first round of Yearly Transplant Testing at the new resort. This was not here, it was at another building slightly off campus. (OSU is very very large)

Here’s what I had done:

PFTs—spirometry (aka, basic PFTs where we check how much lung function I have), a gas diffusion test (which tells you how various gasses diffuse in my lungs and such) and another test called “the box” (where you sit…in a box), and to be honest I’m not entirely sure what that does. I want to say it measures tidal volume or something like that, but I only do it once a year, so….

I met a new respiratory tech (RTs). She was nice. At the time I didn’t know this, but now I know that my PFTs and chest X-rays and blood work will all be happening at this building, so I ‘ll probably get very familiar with the RTs, infusion nurses (because blood work=port access=infusion clinic!), and radiologists here! The building is pretty nice, and it has food, so that’s a good thing, and free parking.

Anyway, PFTs were fine/good. So yay there.

The Six Minute Walk, which I was sort of dreading. Basically a course of a certain length in a hallway is marked and you just walk around the two cones that mark the ends, doing laps for six minutes while your oxygen saturation (sats) are checked via a pulse ox. I was i the normal range, hallelujah!!!! I was really nervous about this test because, you know, haven’t really been getting out all that much….

Then I had a CT scan, which was fine except for two things—one, they had me move on my stomach for some of them, which was uncomfy because I’m a stomach breather and so I couldn’t really hold my breath that well or that long and they kept doing them back to back, so I couldn’t really catch my breath, and two, they just shoved me back out in the hospital without letting me stop to put my bra back on. WEIRD.

So I had to go into the bathroom and, you know, get dressed again. (I had my shirt on, just not my bra. So, weird.)

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OK so after this, I went to another building for the cardiology tests. I was really early—we were booking it today—but once they adjusted to a patient being early, they took me early. I had an ECHO which I loathe with all my being because it HURTS having someone push a transducer INTO YOUR RIBS. For a half hour!

But we ended the day with an EKG, which was fine. Both these tests were fine. SO YAY WINNING AT LIFE.

via GIPHY

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And then I went and got lunch at a French cafe and sketched! (Yes, I wore a mask. There was no one in the dining room. Everyone was out on the patio or in the little bar because it was a really nice day, so I had the whole dining room to myself and I sketched and had quiche lorraine and a chocolate croissant and it was LIFE.)

via GIPHY

See? NO ONE AROUND. Also social distancing markers!!!!

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OK so, that was Friday, which was also my daddy’s birthday. And then mom’s birthday was on Monday. So here are my cute parents:

and their 41st wedding anniversary is on Tuesday! And that’s also my grandma’s NINETIETH birthday!!!!!

(here’s grandma)

At my sister’s wedding last year in Estes Park, CO.

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OK so lots of parties.

Anyway, yesterday, I had my first appointment at the new lung transplant clinic (pictured above!). It was my same doctor, which was great, and my new coordinator is really nice, so I think we’ll get along just great.

The clinic is….weird. Actually, OSU itself is sort of weird, in that it has these programs, but then it doesn’t have ancillary services that they need. Like, they have a ton of immunocompromised patients, because they have a huge cancer center and transplant section, but there’s no special waiting room for us in the ER.

via GIPHY

So, yeah. Why.

Also, the waiting room is basically in the hospital’s atrium, which also makes me go…..why. That doesn’t seem awesome. It’s also incredibly noisy so it makes it very hard for the hearing impaired like moi!

ANYWAY.

Eventually I will adjust to these things.

So the way it works now is I will still be seen every three months. Clinics are in the afternoon, so a few days before my appointment I’ll go to the other offices in the AM for blood draws, PFTs, and chest x-rays (CXRs). Then I have clinic. And we’ll go from there. I do sort of like not having both on the same day.

I will also meet at least one other doctor in the clinic so that someone else has met me and is familiar with all my specialness! :)

(See: CF. Menopause. CI that counter indicates MRIs. Port. Hearing loss! Anemia! Weird diabetes!)

We asked questions, we got answers, and Dad went with me too so he has also met the new folk and seen the clinic.

Also, there is plentiful parking at this location! YAY!!!!! (and it’s free for patients! DOUBLE YAY!)

So now, I’m done with doctor appointments until like, September, and I rejoice in this, and will now take a long weekend to recover from all the madness of the past month! :)

Seven Quick Takes--Doctor Week

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OK so, this isn’t really going to be a quick takes, I don’t think, it’s really going to be more of a “this is what happened in Emily’s world!” this week. :)

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MONDAY

I contacted my endocrinologist b/c I think, per usual, that we changed too many things about my insulin at one time and it was MAKING ME CRAZY.

Really. It was “Emily hates the world for no apparent reason and also WANTS TO CRY FOR NO APPARENT REASON.”

Not fun.

So yeah, we made a few small tweaky things—as in, we’re just slowing down the insulin train. Hopefully that will help. (And will also help my weight….sigh….because yeah, I HATE gaining weight b/c of insulin adjustments. HATE IT.

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Time to visit my ENT!

While in the waiting room, I snapped this picture!

First, yes, those are lovely old school Resort face masks, because TEDDY BEARS!!!!

Second, that’s how you wear a mask! It must cover your nose! It must adjust to your face!

Please don’t be stupid. If you’re gonna wear a mask, wear it properly.

Anyway, the ENT was fine. Thank goodness, because I’d had a sinus infection during all this and apparently it left nothing but a little bit of “debris” (his word) that we got rid of. Yay!

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Wednesday: Dermatologist! Apparently she wants me to use some sort of cream on my arms. So I’m waiting for that to be delivered, but the good news is that we didn’t see any sort of new skin cancers, so yay there!

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Today was book club. I’ve also been really sore all week because of the new workout I’m doing. It’s ROUGH. I mean it’s hard cardio, so the legs are adjusting, but cranky.

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And finally, (so 6, not 7, takes) tomorrow I have all my yearly transplant tests at the New Resort and I’m a little nervous about that. One, because I don’t know if people will take off their masks to talk to me. Two, I’ll have to explain all sorts of things to these people. Like, my PFTs are generally a little weird. They’ve always been that way. Etc. Third, I’ve actually had respiratory techs yell at me because I haven’t been able to do the tests “properly”. Um…..I’m doing the best I can here!!!!!! So yeah, I’m afraid of new techs.

The tests will take all day (full PFTs, 6 minute walk test—UGH, dreading this—a CT scan, and then an EKG and an Echo.). Afterwards I head to my parents’ so we can celebrate my dad’s birthday!

So that’s it from around here! How are you doing?

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!

Billy Love

Getting to meet Billy on Sunday

The first post I wrote about Billy is, far and away, the most popular thing I’ve ever written.

I’m so glad that so many people got to know this incredible little boy and his fabulous parents. I’m so glad—and overwhelmed in a good way—by all the comments, prayers, and e-notes I’ve received saying they are praying for Billy and his family.

Sadly, Billy passed away in his father’s arms this morning (Tuesday, March 23).

He was loved, and so cared for, until the end.

These six days they had with him were an incredible gift from God. They were a miracle. I’m sure about that. Billy wasn’t expected to last an hour. Instead, he gave his parents almost a week to rejoice and delight in him—and for us to delight in him as well.

Tiffany got to nurse him. Bill changed his diapers. They slept with him on their chests, cooed at him, took videos, rocked him, and loved him. Billy grasped their fingers and looked into their eyes. His grandparents and aunts and uncles delighted in him. And so did all of us.

The day they left the hospital, the membrane that covered Billy’s encephelocele began to break down. The neonatologist said this was to be expected. At home, the brain tissue began to bleed. But through it all Billy and his family had the love and support of their family and the wonderful hospice nurses from The Resort. Billy was kept comfortable and was always in someone’s arms. He was unbelievably loved, and only knew love his entire life.

I was so blessed to be able to see him. I was so blessed to see my best friend hold her child, her first-born, to mother him, to see Bill hold his son against his chest and feed him. I stroked his little ear and marveled at his tiny fingers and even tinier nails. I delighted in him.

On Sunday, we heard the gospel that contains my life verse—Jesus healing the man born blind. My verses are taken from the beginning of the gospel’s ninth chapter:

As Jesus passed by, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned. He was born blind so that God’s works might be revealed in him.”

I don’t know why I was born the way I was—but God does. I don’t know why Billy was born the way he was—but God does.

Maybe we were both born this way so that we can glorify God. I certainly hope so. That’s what gives me comfort, and that’s why I consider this my life verse.

Billy’s short life glorified God. His parents’ faith and love glorified God. The support, community, love, and prayers of all of you for this little family glorified God.

A few weeks ago, Bill and Tiffany’s church had a luncheon for them, to celebrate Billy and to provide support for Tiff and Bill. At the lunch, we made a quilt, where every guest was invited to write something to Tiff and Bill on a square. The quilt was draped over their couch when I went to visit. It is beautiful.

I had brought my Bible with me, and I spent time going through it, wondering what to write. Finally, I settled on one of my favorite verses. It’s the verses that begins the epilogue of my book.

“God himself will be with them;
he will wipe every tear from their eyes.
Death will be no more;
mourning and crying and pain will be no more,
for the first things have passed away.”

 And the one who was seated on the throne said, “See, I am making all things new.” 

—Revelation 21: 4-5

Today’s Mass reading from Isaiah talks about a time when infants will not die after a few days. When I heard that at the streamed Mass this morning, I almost dropped my coffee mug. Billy was dying, and here Isaiah spoke of a new world, where we would all live the lifespan that God appointed us. There would be no more crying, or death, or sadness. We would all live together to old age. Isn’t that what every parent wants for their child?

We all loved Billy. I thank you for all the love that you gave this family, that you continue to give this family. Please pray for them. At this time, the state of Ohio is essentially shut down—I don’t know what’s going to happen with the funeral. Thankfully, their families are local, so they have that support here in town and they can be together. Please continue to pray for them.

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.

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

Seven Quick Takes--writing, pro-life ministry, and Washer Monster

Linking up with Kelli!

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Around these parts this week:

Doing the best you can with what you have

Prime Day deals—Prime Day is over, but if you haven’t checked in with Take Up & Read lately, we have a lot of gorgeous studies! Maybe it’s time to start Christmas shopping?

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This is sort of a…well, a sad take. But.

On Twitter this week I saw a woman writing about how she didn’t know how to get a casket for her miscarried child.

The Trappist monks of New Melleray Abbey provide infant and child caskets free to families.

Free. Gratis. No charge.

Go here, and scroll down to “child”, and select a size.

These are beautiful handmade caskets. In addition to the caskets, the monks will plant a memorial tree for your child, and remember your child in a special Mass. The parents also receive a keepsake cross made of th same wood as the casket.

If you need one IMMEDIATELY, call them at:

888-433-6934

They answer the phone 24 hours a day.

They also have a child casket fund, where people can donate to support this ministry, here.

This is such a beautiful service they provide. I know it’s terribly hard to think about, but I have had friends who have lost children to miscarriage. This makes one part of it easier—you don’t have to make your child’s casket or fumble around at a funeral home. The monks will do it, beautifully, for free.

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The book skips along! It’s done with copy edits so my editor has it now and is working on it. No cover art yet but the minute I have it I’ll share with you (subscribers find out first!)

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This week I finished a long linen scarf I knit to use in the summer. I love it. It’s a gorgeous color. So I went to block it in my washing machine. I had run a test piece of linen before and it came out fine so I thought I’d be fine this time.

NOPE.

Washer Monster wanted to eat it.

via GIPHY

But my lovely maintenance man here saved it! Yay!

Yay! It’s saved!

I’m always amazed at how well linen blocks. It’s just great. Such a difference!

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I’m on an Emily Blunt movie binge lately. I watched The Devil Wears Prada and A Quiet Place this week and I’m going to watch Mary Poppins Returns tonight. (My movie BF Colin F. is in it too. I do love his movies.)

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Sometimes we live in Hoth, here in Ohio, and sometimes it’s in the 90s with a heat index giving us a temp of 114. Yeah, it’s that day. So, movie binging and working on house projects today!

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It feels hard to believe that July is half over and that Target has school supply displays up. When do the schools in your area go back? Ours tend to go back in the middle of August now, but they get out before June.

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.

Trust, Courage, Faith, and Transplants

I had a holy hour last week before Mass, and as I was paging through my Magnificat, I noticed a few things.

Do you see them, too?

Matthew 9:1-8

The Healing of a Paralytic. He entered a boat, made the crossing, and came into his own town. And there people brought to him a paralytic lying on a stretcher. When Jesus saw their faith, he said to the paralytic, “Courage, child, your sins are forgiven.” At that, some of the scribes said to themselves, “This man is blaspheming.” Jesus knew what they were thinking, and said, “Why do you harbor evil thoughts? Which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk’? But that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic, “Rise, pick up your stretcher, and go home.” He rose and went home. When the crowds saw this they were struck with awe and glorified God who had given such authority to human beings.

And here….

Matthew 9:18-26

The Official’s Daughter and the Woman with a Hemorrhage. While he was saying these things to them, an official came forward, knelt down before him, and said, “My daughter has just died. But come, lay your hand on her, and she will live.” Jesus rose and followed him, and so did his disciples.  A woman suffering hemorrhages for twelve years came up behind him and touched the tassel on his cloak.  She said to herself, “If only I can touch his cloak, I shall be cured.”  Jesus turned around and saw her, and said, “Courage, daughter! Your faith has saved you.” And from that hour the woman was cured.

 When Jesus arrived at the official’s house and saw the flute players and the crowd who were making a commotion,  he said, “Go away! The girl is not dead but sleeping.” And they ridiculed him. When the crowd was put out, he came and took her by the hand, and the little girl arose.  And news of this spread throughout all that land.

Do you see it?

Before Jesus heals these people, he tells them to have courage.

A lot of people tell me I am brave.

I am not brave.

Doing what you have to do to keep on breathing is not brave. It’s necessary. Now, granted, I had to make the choice to go for transplant. If I hadn’t done that, then I wouldn’t be sitting here, writing this, precisely fourteen years later. In fact, as I write this (at 10:47 a.m.), fourteen years ago, I was in the OR. My surgery began around 6:45 in the morning (at least that’s when the epidural started, I think). So, yes, I made the decision to go for transplant. Was that brave? I don’t know. I don’t personally think so.

Really, though, a lot of the time, I did not feel brave. I did not have the courage Jesus is telling these people to have.

But as I looked at these verses, I thought, this is right. They need courage for what’s about to happen. Because it’s scary, to be suddenly plunged into a world you didn’t think was possible, something you had hoped for, but didn’t think would actually happen. It’s sort of terrifying.

These people had faith that Jesus could cure them. And I had faith, too. I’ve always had it. I’ve never doubted my faith. But did I have courage? Did I trust Jesus?

Ah. That’s the slow growing bloom of faith. Faith is the seed. But courage and trust? That’s later. That’s a result. It’s the result of a lot of dark nights and lots of tears and feelings of this is never going to happen.

And I can say that even if I hadn’t been transplanted. Remember, God is always good. I would’ve been cured, either in heaven, or here on earth. And I was lucky that I got my miracle here. Some people aren’t as lucky as I was. That’s the sobering fact.

Throughout, though, Jesus tells us to have courage, because something is happening. And it might be something great. But in the moment, there is fear. There is death, as we see with the little girl. But then…

life.

Even if it’s life on the other side of death. We know how this story ends. We know that death is not the winner.

Trust in Jesus sounds great, and it is great, but until you’ve really had to surrender your will, to say I have no control over this—that’s when you need the courage. It takes courage to trust in God.

Jesus knew that. And I think that’s why he tells these people to have it, to grasp it, to be strong in the moment. Because in the moment when the miracle happens, you might feel like you’re going to drown—save me, Lord, I’m perishing!

If I look brave, it’s really because Jesus gives me the courage to take the steps forward. It’s not my courage at all. It’s his.

My Dominican saint is Bl. Lucy of Narni—and yes, she’s the one C.S. Lewis used as inspiration for both the name “Narnia” and Lucy Pevensie. I’ve always loved Lucy. But remember, Aslan tells Lucy, “Courage, dear heart.”

We need to be reminded to have courage, to keep trusting.

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! :)

Seven Quick Takes--You Are Not a Mistake

Linking up with Kelly!

-1-

OK, It’s about to get really earnest and passionate in here, folks. Don’t say you haven’t been warned.

With all the new pro-abortion laws coming out, the number of tweets I’ve seen, and articles I’ve read, about how mothers “need” to abort children who are disabled makes me want to scream. There’s nothing quite like the experience of being told that you are not worthy of living to make you really angry.

So we’re just gonna lay it all out here:

If you are a person with a “genetic anomaly”, like me:

You deserve to be here.

You are loved. You are here because God loved you so much that he wanted to create you. And here you are. You are not a burden. You are not a mistake. You are a beloved child of God.

Any one else who says anything else? Deserves to be smacked upside the head. (Verbally, at least.)

—II—

DO NOT give in to these people, my fellow genetic mutations. :) You are WORTH EXISTENCE. If I never write anything else, ever again, please remember that. Please remember that you are loved beyond all measure by God who created you.

-III-

Remember Pope Benedict:

-IV-

OK, is that enough angst for you? And passion?

Because, seriously, folks. Seriously.

-V-

Onto other things! I have submitted my draft! YAY!!!! The first hurdle is cleared in the journey toward Real Bookdom! Yay!!!!!!

-VI-

If you just cannot wait until January to read a book of mine, Catholic 101 is available now and is five bucks!

-VII-

I have scrummy linen yarn sitting in my mailbox that I have to go fetch, so we’ll wrap this up. But remember.

You are not a mistake.

via GIPHY

Joy In the Morning (OR: How I get up every day and do life)

My siblings and I on my brother’s wedding day.

Warning: This might be a sort of rambly post. Settle in.

I was visiting my therapist last week. Yes, I see a therapist. I have since I was 17. A lot of people with CF do (not all, but a lot). I have no shame in telling you that.

So anyway, I was at an appointment with my therapist, and we were talking about how I was a bit maxed out on doctor visits. I mean, in almost thirty-seven years of life, I think my quota’s been hit, right?

And that doesn’t even count the other “stuff” we do—Mom accessing my port every month, the meds I take (which are vastly less than pre-transplant, btw), the blood glucose tests I’m doing twice a day now, etc. It’s a lot. It’s less than pre-transplant in some ways, and more in others. I have a colonoscopy every five years, which means one next year. I have a mammogram in April, because my mom had breast cancer and so my sister and I have to start our mammograms at age 37 (ten years before Mom was diagnosed). And then there’s dentists and eye doctors and the things normal people do.

So, yeah, it’s a lot.

This led to talking about compliance, which means, doing what the doctors tell you to do. And I told a story that I thought was illustrative.

When I was about seventeen, I was having a regular clinic visit, an I saw a sign on the wall of the exam room, saying that if you were 95% compliant with taking pulmozyme (one of the CF meds), you’d get a prize at your next clinic visit, see your nurse for a chart to win! Stuff like that.

Now, I never did these, because, generally, I was too old. This stuff was generally for the smaller kids, to get them in the habit. But what I thought was interesting was that the center wasn’t pushing perfect compliance.

Because that doesn’t exist.

Now, look, I’m not saying I was a slacker. Because I wasn’t. My mom, for one, wouldn’t let me be, even if I was disposed that way. I take my meds. I did my treatments. But yes, sometimes there were times where I put in a few minutes of precious sleep over a “perfect” Vest treatment, when I was in college. Sometimes I just went to bed. Not often, but sometimes. I wasn’t “perfect”, and I’m not perfect now. To be “perfect” now, I’d be a MESS. I’d be taking meds all day long, worrying about timings and if this was going to interact with that and how does this work and oh my gosh my brain is going to explode!

I take all my meds, and I take them twice a day. Is that perfect? Well, no. It’s not optimal. If can affect absorptions. *

But here’s the thing—I want a life. I don’t want to live in a glass bubble.

I went to school. I did activities. I rode bikes with my friends and went to the pool in the summer with them and then we went to the coffee shop and played board games. I had sleep overs, where I didn’t bring my equipment! I went on choir tour! (And yes, I brought the mini nebulizer!) I went to college.

Honestly, if my parents had tried to wrap me up in the bubble, I would’ve had a fit. I always wanted to be like everyone else, as much as possible. As Erin once said in a Home Town episode, I’m like a wild pony, and I need freedom!

(Not too much freedom. But enough freedom.)

So anyway, talking about all the things I had to do every day, my therapist then said, well, how do you do it? I mean, what gets you up in the morning?

And then I said, “well, that’s sort of what my book is about.” (Because it sort of is. Sort of. The book is sort of about a lot of things! )

But here’s what it comes down to:

Yes, there are a lot of things I have to do in my life. More than the average bear, that’s for sure, so when people say “well, you just have to suck it up and do X,” I want to roll my eyes, because that’s a big chunk of my day. (I’d wager it’s a large part of everyone’s day. As my grandfather used to say, “that’s why they call it work!”) But yeah, for me, and for other people like me, we have a lot of stuff on a daily basis that isn’t fun but must be done, and you just do it and don’t whine about it.

But what gets me up in the morning? Well, a lot of things. I’m very in touch with my inner child and I get excited about really little things. When I was working in the Senate, a lunch date with my Dad was enough to make me excited for the day. Today, it’s stuff like, a package is coming in the mail! It’s a hockey night in Pittsburgh! I get to write today! Oh, this book comes out! My book is in at the library! Chuy’s with Mary!

I’m very easily amused. And that helps me, I think, because it overrides a lot of other things that are not so fun. (Like making myself go to the gym. And poking my fingers. And doing doctor paperwork.)

But a big part of this, and this is what I’d say to anyone facing a chronic illness, is this:

Go live your life!

You really, really, really cannot hole up in your house and be all sheltered. You can’t. GO LIVE YOUR LIFE. Go outside! Do things! Be free! Have fun! Go to the park! Go swimming! Pet a dog! Whatever!

Yes, treatments are vital. YES, compliance is important—if I hadn’t been a compliant patient I NEVER would’ve been listed for transplant! But if you’re caught up in PERFECT, then…..you’re going to miss things and your life will be so small.

Seriously. Do what the sign says.

Live your life. Take your brain with you.

*: As far as absorptions: the only meds I take that NEED to be taken around the same time every day are my immunosuppressants (the prograf). That’s important. However, I am also far enough out that if I’m off by a few hours in a dose, the world will not end. When I traveled to LA, my nurses told me to just take the meds on LA time and not worry about being exact. I used to take my meds exactly at 8 AM and 8 PM (even rushing to the lobby of the Ohio Theater to take meds before a symphony concert started). Now, it’s generally around those times. I’m not quite as OCD.

The meds I’m talking about here are things like my nexium and magnesium supplements. You’re not, really, supposed to take them together. But if I didn’t, then I’d be carrying around meds all day and thinking about when to take them, as opposed to thinking about things more worthy of my brain space! It’s not a huge deal to take them together. But yes, some meds do have to be taken at certain times, and when I do those (like home IVs) then, yes, it’s on the dot as much as possible. You usually have about an hour leeway on either side of the dose time (for example, if the dose is due at 6 PM, you can do it at 5 or 7, but not 4 or 8.)

Seven Quick Takes--Stories from the Loony Bin

Linking up with Kelly!

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

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

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

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

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

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

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

-1-

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

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

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

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

—2—

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

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

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

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

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

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

And then we hear, “hello?”

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

—3—

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

“It’s water.”

“Oh.”

—4—

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

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

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

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

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

—5—

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

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

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

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

All I could do was laugh.

—6—

This one has entered family lore:

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

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

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

—7—

OK this last story is me.

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

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

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

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

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

“I’m sorry, what did you ask me?”

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

OH.

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

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

Seven Quick Takes

Linking up with Kelly!

—ONE—

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

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

—TWO—

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

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

—THREE—

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

—FOUR—

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

And you can help me!

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

—FIVE—

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

—SIX—

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

—SEVEN—

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

Burdens

Kelly at This Ain’t The Lyceum wrote a great piece about how everyone is a burden to someone at some point in her life. It’s not just people who are disabled, or poor, or old, or whatever. ALL of us were, or will be, a “burden” to someone.

One of the things you hear when people talk about assisted suicide is that they don’t “want to be a burden” to their loved ones. But think about it. Babies are inherently a burden to their parents. They can’t do anything for themselves. We all started there, and we’ll probably all go back there as we get older.

This touched me specially because I had a call with a “disability caseworker” last week, and I’m working through the SSDI application process. This entire process is dehumanizing and humiliating. It boils down to what you can do, and strips away anything else. So at the end of this call, which involved both my parents, I burst into tears.

“Why are you crying?!” My parents asked.

“Because these things are so humiliating. I feel like such a burden to everyone, I can’t do anything, you guys are just stuck with me forever! No one wants me!”

“We want you,” my parents said.

And then they reminded me that they really did want me. This wasn’t just parents saying what they’re supposed to say (like when you ask your boyfriend if a dress makes you look fat. There’s a right answer to that question.).

My parents really wanted me. They prayed hard for me. They got married in 1979 and I didn’t appear until 1982. My mom always wanted to be a mother. They prayed hard for me, and, in an example of God taking people seriously, Mom had said in her prayers that she would take a baby who needed extra care, because she knew she could love and take care of that baby.

And believe me, she has. The things my parents have done for me would take a really long time to explain, but here’s just a bit of it:

• Many, many, MANY ER runs (One during the Super Bowl, when the Steelers were playing. My parents are huge Steeler fans.)

• Monthly blood draws when I was a toddler.

• Driving to Cleveland in a snowstorm for an appointment.

• Many many many overnight hospital stays

• Learning how to reconstitute medicines and give them via an IV, even 8 or twelve hours—yeah, that means middle of the night stuff. WHEEEE!

• Beating on my chest twice a day, every day, as part of daily CF therapy (now that’s not really needed, there are inventions that take care of it, but back then, not so much).

• Many insurance phone calls

• Learning how to dress a third degree burn, and then doing the dressing at the kitchen table, which was just par for the course at our house.

It’s a lot. And I’d be lying if I said I never felt like a burden to them, because I do. Our society makes it clear of what it thinks about “people like me”. I’ve had people tell me, to my face, that I shouldn’t exist. That’s sort of hard to deal with. And as I get older, I get increasingly sadder about this fact that I’m not married, so my parents have to handle everything for me, because I don’t have a husband to help out. (Not that every husband would help out….)

But really, Kelly’s right—we’re all burdens. We just are, it’s part of being human. We depend on each other. Think about it. Even a “normal” kid needs mom and dad’s helps. Even “normal” adults need help every once in awhile. We can’t do everything ourselves, it’s just not possible.

But we see this as being wrong, and as something that needs eliminated. Sure, we all want to be independent. I am very glad, for example, that I can use the bathroom by myself, because having gone through periods of my life where I’ve had to wait for a bedpan or three nurses to help me, I do not take that ability for granted. But you know, there are times when I haven’t been able to do that, when mom has had to wash my hair, or Dad has had to call AAA because I can’t call them.

It can be a lot. It can be humiliating, and it can be depressing. As a society, we need to really focus on the person, because we are all God’s chosen people, in that, God willed us into existence. This is my existence.

I’m glad that I am independent, in some ways. I’m glad that I don’t need to rely on my parents for everything. But at the same time, I know that even when I have needed that, they’ve answered. And I know some parents don’t—I don’t know them personally, but I’ve seen them, I’ve heard the horror stories. I’m lucky.

People are people to be loved, not to be called burdens or dismissed because of it. Really, we could all be burdens to God. Think about how slow we are. I mean, doesn’t he ever sit up there and just facepalm? Seriously, humanity?! WE COVERED THIS!!!!!

But God made us anyway. People love us anyway. Our worth isn’t about what we can do or what job we have or anything external. Worth is internal.

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

(c) Erica Kay Photography

and some theology

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

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

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

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

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

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

Because it doesn’t work that way.

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

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

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

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

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

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

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

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

He always loves you, too. No matter what.

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

—John 9: 1-3, NABRE

Thirty-six or sixty-six?

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

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

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

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

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

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

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

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.

#10 I didn't die at barre class

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

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

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

What in the world?!??!

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

So that was my goal. Get through class.

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

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

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

Maybe….I need to go more often?

Maybe my body can do things?

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

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

So basically, a great day.

What people say

Roses outside the parish priory

I was reading one of Nie Nie's recent posts, and it got me thinking. 

Like her, meeting new people can make me nervous. There's a lot to explain. If I go out to eat with a good friend, they know my "I don't understand please translate" look I give when the waitress is talking. New people don't.  My friends know that if I miss something or mishear it, that I didn't mean to do it, and they'll correct me and we'll move on. New people don't know these things. 

New people also don't know why my arm is scarred up. Like Nie, I was burned--not nearly as badly, thank God. But, people ask about it. It's not "normal."

Some people think that "nice people" don't ask rude questions. They do. 

I was asked to show someone my transplant scars in the middle of an office. They're underneath my breasts. Not happening. 

I've been asked what happened to my arm when I'm buying moisturizer and toilet paper at Walgreen's. Recently, a checkout clerk asked me what happened to it as I was digging out my wallet. 

"I was burned during surgery." That's all I wanted to say. People are not owed my whole story just because they're curious. 

But this woman wouldn't stop. "What hospital was that at?"

I didn't answer. I slipped my card into the reader. Fortunately, by this point, there was a woman behind me. The employee continued chattering at me as I finished my transaction. 

Why do people do this? Because they're curious? They probably don't mean to be rude, but they certainly didn't think before the words left their mouths. 

I don't mind little kids asking me, because they really don't know better. Adults do. 

You're not entitled to know everyone's story. My life and its intimacies aren't your personal fodder. It's like touching a pregnant woman's stomach. That's just wrong, man. It's not yours to touch. 

I write here. I talk about my life. I want to do that. But that doesn't mean that when I'm buying toilet paper I want to go into the details of transplant and skin grafts with you. And honestly, people aren't owed that information. 

People can be crazy rude. And it hammers home the point that, yes, my arm looks weird. But if you want to talk to someone you don't know, compliment them? Say they have great eyeliner or their shoes are a fun color or something. Don't say, hey, why is your arm funny? Why are you in the wheelchair? Why don't you have any hair? 

I don't mind talking about it, but I don't like it being pointed out like it's some sort of freakish wonder. There's a difference.