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.

Illness & Piety

The second station: Jesus Carries His Cross

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• We can perform spiritual reading.

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

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

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

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

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

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

Virus Lent

My porch, enjoying some nice late winter sun!

OK, NO, I AM NOT SICK.

So if you were worried about that, relax. :)

However, my team is being abundantly cautious, so I am essentially living like I did immediately post-transplant, which means I”m not really going anywhere and no one sick can come to me. Which is actually the general rule, but now it’s just more….heightened. Fortunately my family members who are local work from home and don’t travel much, except my sister in law, but her travel is domestic and so far she’s fine (thankfully!).

So, for me, no Mass. No My Fair Lady on Saturday (sadness!). No doctor appointments like my diabetes education class. And I’m fine: I mean I’ve got the things I need here to keep the house going and clean, to keep myself fed and medicated.

Which brings me to—-

If you have any burning issues that you want me to write about, let me know because now I have time! :) I think my long-thought-about Outlander and Catholicism series might finally take flight!

I am hoping to keep my adoration hour. I chose it because I am the only one there at the time, and if I’m not going to Mass then I want to be at adoration. Also there are enough seats in there that we don’t have to be cheek and jowl, so there’s plenty of SPACE, and I can wipe down chairs and such with wipes if I want to/have to.

My diocese hasn’t—as of this writing (3/12 at 12:31 PM) cancelled Masses. So Masses are still going on.The governor is limiting big events with crowds and I think he’ll probably come out with an order about that today, banning big gatherings and such to prevent the spread. So far in Ohio we’ve got four cases—three in Cleveland and one in Summit County, which is near Cleveland. I don’t blame the governor for wanting to be cautious.

Let’s keep each other in prayer and let’s be smart, OK? Don’t go to Mass if you’re sick at all. Don’t shake hands at the sign of peace! Don’t crowd people at Mass—let’s give each other room, if at all possible.

I hope we all come through this OK. Praying for all of you—pray for me too? :)

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.

A Little Retrospective: A Decade Past

After reading Erin Napier’s journal post on a decade in the rearview, I felt inspired to do my own, and honestly, these last ten years of my life have been pretty nuts, and thus worthy of a retrospective!

Here we go….

2010: Five Years Into It

In 2010, I hit my five year transplant anniversary, which I celebrated by doing the show Oliver! I went to Duck for the second time with my parents and my sister and enjoyed it just as much as I had the first time I went with Tiffany and her family in 2008. I was blogging but I didn’t have this site yet. I knew I wanted to write a book , but at the time it was sort of an ephemeral idea with me writing a few things here and there.

2011: Unbreak my heart

The year began with The Importance of Being earnest, and heart issues. I had Afib/SVT—we never really figured out which—which led to an admit in January and a second ablation at OSU in April, but I was released before my birthday, continuing my streak of not being in the hospital for my birthday. I did Ragtime that summer, we went to Williamsburg, VA, for family vacation and I loved it. I also moved into Barton Cottage (the townhouse) that year.

2012: New Job

I moved to the Clerk’s office after the 2012 elections, was in The House of Bernarda Alba, and was still writing. I turned 30! :)

2013: So much travel

I went to NYC for my first Jeopardy! audition and saw Once with my cousin Jack. We had a lot of fun that trip. I went to Disney World with my dad and was in Les Miserables that summer and And Then There Were None in the fall.

2014: The last working year

I began the process of taking disability retirement from the Senate, because working full-time was just not working with what my body needed. March 14 was my last day, and I saw The Phantom of the Opera that night with my friend Mary. I went back to Disney World with Dad , was in The Music Man and Hello, Dolly! and made life promises as a Lay Dominican.

2015: Getting it all on paper

I began the process of writing The Book by getting my entire story on paper, thus creating the very first complete draft. Edel 2015 was awesome—I spent my 10th anniversary there and was interviewed by Hallie Lord and Jen Fulwiler for Jen’s radio show. It was a great experience! I had my second Jeopardy! audition in Boston. Dad and I ate at Legal Seafood, Cheers, and a great Italian Restaurant in the North End. I also set up this website! So it’s five years old this year!

2016: Jeopardy!

I was in the hospital in January with pneumonia (booo!) but went to SoCal in April (yay!) to be on Jeopardy!

2017: Digging into my writing

I attended the Making Things Happen Conference and made great progress in my writing from that. I started writing and editing for Take Up & Read. We went to Williamsburg and Duck for vacation!

2018: Working

I started sending out book proposals….and more proposals….and more proposals…..My brother got married!

2019: Gold, Jerry, Gold!

I got my contact with Ave Maria Press, wrote the book in about three months, and my sister got married in Colorado. I was in the hospital when my book cover was revealed and pre-orders opened! And I moved to Orchard House! Oh, and Dad and I went to a Blue Jackets playoff game—another thing I could check off my bucket list! :)

2020: The book!!

The book was published. I’m going to New York in April. And it’s my 15 year anniversary in July.

Also coming up: Seeing My Fair Lady with Dad in March!

Woooooo!

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

Linking up with Kelly!

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

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And here’s the follow up:

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

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

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

The Prograf (or, THE GRAF).

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

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

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

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

AH! Well, that would solve problems!

Or….would it????

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

Hahahaha.

NO.

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

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

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

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

So.

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

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

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

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

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

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

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

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

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

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

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

Plan A, Plan B, Plan C....

Two sisters on a terrace…..waiting for a guy…..

If you’re on Twitter, and you follow me (Or really, follow Catholic Twitter), you’ve probably noticed the ongoing debate about women and college. There are people who think that, if a girl wants to be a stay at home mom (SAHM), that she doesn’t need to go to college. She doesn’t need the degree, she doesn’t need debt, she just needs a husband! Then all her problems will be solved!

Guys. (Ladies?) Let Auntie Em tell you some things.

Number 1: You can go to college without debt

You can. Really. It’s true! I did it! Part of that was because my parents had saved money for me (and my siblings). Part of that was that I chose a college we could afford—and by afford, I mean that my parents told me, very early on (like, freshman year of high school) that if I wanted to go there, I had to get scholarships, because we couldn’t afford it without them.

I got said scholarships. With scholarships, and my parents’ savings, and the savings bonds I had been given as gifts since I was a wee bairn, I went to college without debt.

So, yes, it can be done. (I realize it cannot be done for everyone. I know I had good parents.)

But that’s not really the point here.

The point is, girls—you need a plan.

Number 2: The man might not show up

I was engaged in college. Yes I was.

I am not married now.

We didn’t get married. Which was a good decision, on the whole (that’s not a smear on the guy. It’s a fact based on where I was at the time, and that we were incompatible, and we were engaged for the wrong reasons. But not going into that here!).

But, my goal, as a 19 year old, was to get married, have kids, and be a SAHM. That’s what I’d always wanted to do with my life.

Honestly, it’s still what I want to do with my life.

But….I’m 37. I can’t have kids. (Naturally, anyway. I’d adopt!) And I’m not married.

Some people—and yes, these people exist—would say that I shouldn’t have left my parents’ house, that my father should still be “in charge” of me, and that I am doing everything wrong by having an independent life. Because, apparently we all live in a Jane Austen novel where unmarried ladies are supported by their fathers or brothers forever.

via GIPHY

If you want to see how awesome that was….remember the scene in the 1995 Sense and Sensibility, where John is talking about how much he’ll “give” his mother and his sisters to live on, and his wife keeps wanting it reduced? Yeah. That. Fun times!

So, look, ladies.

The man might not show up, no matter how much you want him to. Or he might show up really late in the game!

And until then….you have to be able to support yourself. That doesn’t necessarily mean college, but it does mean a skill set that you can use to feed, clothe, and house yourself!

Number 3: The kids might not show up!

Do we really need to say this? I mean, I think everyone knows someone who has trouble getting pregnant, or can’t have kids. So if you want to be a SAHM…..the “mom” part might be an issue.

And I’ve been there. I am there. I understand how sucky that is, trust me.

So if the kids don’t show up, what are you going to do?

Think about it. You might be perfectly find staying home and taking care of the house and husband and yourself sans kids. It’s an option. But….think about it.

I’ve always cringed when I watch shows like the Duggars or something, where everyone assumes they’re going to get married.

That’s not true, guys.

Or, they assume kids will come.

Also not true, guys!

I fully, fully support SAHM life. I am the daughter and granddaughter of SAHMs. I love them. I wanted to be one. My mom is amazing—she worked before I was born, she worked before she met my dad, and boy howdy she “worked” after, just without a pay check…..she can give (and constitute) IV meds, she can do burn dressing changes, she accesses and flushes my port every month, she is awesome. There are times when she seriously knows more than some nurses do. (My sister is a nurse, so no shame being cast here, guys.) Without her, I know I wouldn’t have been as healthy as I was. So when I say I love SAHMs, I do—I wanted to be one.

But ladies. We have to think about other things. We have to have Plan B. We can’t sit around singing “Someday My Prince Will Come” and waltzing with brooms. I mean, we can, but that’s a leeeeetle weird!

via GIPHY

So, ladies—I am here to tell you.

Have a plan that doesn’t involve getting married. Because you might need it.

edited to add:

Even if you do get married, it’s good to have skills.
Your husband could die! He could get hurt or sick! He could become disabled!

And then you’d have to be the one providing for the family.

So, think about it!

Greetings From the Resort

Yes, I’m back in the Resort.

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

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

My old friend!

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

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

Giselle the Unicorn.

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

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

Endocrinology (Or: Not Personal Failure!)

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

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

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

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

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

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

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

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

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

Me checking my blood glucose level at various times a day

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

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

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

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

Going on Retreat Part Three: Sunday Morning

Part One is here

Part Two is here

My alarm went off at seven the next morning, and I sort of hustled, because breakfast on this day is continental, served in the lounge; it’s mostly cinnamon rolls and bakery things, and if you’re slow, the good stuff is gone. :) (Good stuff meaning danish, in my world). So I hurried, dressed in my Sunday Mass clothes and got a cherry danish (win!).

After that, I went to the chapel to pray lauds before the closing of adoration at 8:15 by Fr. Stephen. (Even if you can’t make a retreat, consider going to adoration? Even if it’s five minutes! Go stop by and say hello to Jesus! Get to Mass five minutes early, if there’s no adoration chapel where you live.)

After the close of exposition and benediction, we had the last conference of the retreat, on Confirmation. This was followed by a bit of Q&A, and then the last Mass of the retreat.

After Mass was over, we could talk—silence was lifted. So brunch was a noisy, happy affair of everyone chatting over quiche and apple pie bars. I enjoyed talking to the women at my table (especially Olivia) and getting to know them better.

When you spend a weekend in silence praying with people, a closeness forms, but it’s a weird closeness, because you feel close to people you don’t know anything about! So it’s nice to learn a little more about them.

After brunch we cleaned out our rooms and left. “Cleaning out your room” means putting the trash bag outside your door, stripping the bed and stuffing the sheets and towels inside the pillowcases to be picked up, and making sure you didn’t leave anything behind.

I was home a little before noon, and I spent the rest of the day taking a nap, unwinding, and getting mad at the Ravens during the Ravens-Steelers game.

(Me to my mom: I hate the Ravens.
Mom: You just got back from retreat, you can’t hate anybody!)

So, that’s what I did on my retreat.

There are things I could share—how I pack, what I bring, etc.—I could share notes with you….or I could answer your questions! If you have any questions about retreats, let me know in the comment box and I’ll answer them!

Going on Retreat Part Two: Saturday Afternoon

Brilliant Saturday afternoon under the oak trees

Part one is here

So after lunch we had free time until 3:00, when the Divine Mercy Chaplet would be said in the chapel. Priests were available for confession, but other than that, there were no talks planned and you could do whatever you wanted.

Since it was a gorgeous fall day, I went outside to spend some time enjoying the weather while I read my books. I read more of I Believe In Love and wrote a few thoughts in my journal. Some people were making the stations of the cross at the outdoor set that’s been erected, which I would have done, but we were saying stations communally at 5, and I was going to do that.

I took a really brief nap—10 minutes!— then went to the chapel, prayed a bit, and read some more. There’s a small side chapel where I like to sit:

The view from the side chapel

Interior of the side chapel

The reliquary of St. Therese and St. Margaret Mary Alocoque (who promoted devotion to the Sacred Heart) is also in here.

St. Margaret Mary’s relic is on the left, and the other two are St. Therese. The documents are certificates that the relics are authentic.

This is the hardest part of retreat to describe, because it’s so interior, but to me it’s also the best part. Yes, I pray, yes, I read, but I also just talk to God, and listen to His replies. What is He saying to me? What is He asking me?

It’s also a good time to take stock of where I am in my religious life. Is it going well, or not? Am I more fervent than I was a year ago, or not? Does my schedule need adjusted so I have more time for prayer? What is stopping me or hindering my prayer? Distractions? Laziness? (Meaning, I just don’t make time for prayer, when I know I could and should be praying?) Venerable Fulton Sheen said that the spiritual life is meant to grow, not stay stagnant. It’s like our bodies—they have to continually grow. If our bodies stopped growing, we’d be in trouble! So the spiritual life is like that, which is one of the reasons retreat is so important. We have to check in, and it’s a lot easier to do when there aren’t any distractions and it’s quiet!

So I write, and I read, and I ponder, and I listen.

Statue of St. Therese in the main conference room.

After the quiet period, we had the second conference, this time on Baptism, its roots in the Bible and Jewish tradition, and some other points.

Some of the quotes from Fr. Stephen:

“Genesis is like algebra—it’s about relationships.”

“We have a duty to participate in God’s life, with even deeper communion and even deeper fellowship.”

“God’s commitment to us began at our own baptism. Our mission is revealed—we are bound to Christ.”

“We read Scripture in its totality!”

And one of my favorite things I took away from the conference—anxiety and fear push us into a moment that doesn’t exist yet, and it might never exist! In those moments, call upon God who loves you and ask Him for help and what I should do.

St. Therese in the chapel—this statue isn’t normally there, so I’m not sure if they moved it here for her feast day celebration or if it’s a new addition. Either way, I loved it!

At 5:00, we said stations of the cross in the chapel, followed by Vespers and then dinner. The third conference, on the Eucharist, was at 6:45, and as always, in between things you had your own time and space to pray or read or rest or whatever you wanted to do.

(After dinner I actually went on a walk with a friend—Olivia—that I “knew” on Twitter—it was so nice to meet her in person!)

The Eucharist talk was extremely enlightening because it connected our celebration of th Eucharist with the Jewish tradition and really drew strong parallels, as well as illustrating how Jesus was in no way speaking metaphorically in the Bread of Life discourse (John 6). Fr. Stephen mentioned Scott Hahn’s The Fourth Cup, which I haven’t read yet (but will!), but I have read (and am currently re-reading) Brant Pitre’s Jesus and the Jewish Roots of the Eucharist, which is a full, book-length treatise on Fr. Stephen’s topic and is a wonderful explanation fo the Eucharist. It’s sort of mind-blowing, actually.

(This is where retreat is a vacation, yes, but it also causes you to learn, if it’s a good retreat. Yay learning! Yay knowing more about our faith!)

(In fact, one of the most mind-blowing things Fr. Stephen shared was this: the Passover lambs, used for sacrifice at Passover in the Temple, were specially raised, because they had to slaughter more than two hundred thousand of them every year. So there were whole flocks just of these pascal lambs.

These lambs were raised in Bethlehem.

The flocks that the shepherds were guarding on Christmas were…..lambs of sacrifice.

The paschal lambs were at the birth of the Paschal Lamb!)

Our Lady of Perpetual Help in the chapel.

We had one of my favorite things—Eucharistic Exposition—at 8:00. This means that the Eucharist is displayed in the monstrance, and we have all-night vigil, because you can’t leave the Exposed Host alone. So all night, women came and went from the chapel to spend time with Jesus in prayer.

My hour was from 10 to 11. Before then, I had changed into my pajamas and slippers —yes I went to the chapel in my Corgi pants and slippers!—and took my meds so that when I got back I could just go to bed.

Adoration is really a beautiful thing, and holy hours are my favorite way to pray. If you don’t make them, I highly highly highly recommend it, and so do the saints!

After holy hour, I went to bed, because the alarm would go off at 7 again, for the last part of the retreat….

Going on Retreat: Vacation With God

Vacation with God?

Seriously, Emily?

Yes. Because to me, retreat is definitely part-vacation.

Think about it:

You don’t have to do any laundry or cleaning.

The food is provided for you.

There’s constant tea and coffee available, so you don’t even have to make your daily cuppa.

You can sleep whenever you want, in a private room. No one comes in and bothers you!

I mean, this sounds pretty good, right? At the least it’s a vacation from laundry, phone calls, and cooking!

A retreat is really as detached as you want to make it. You can choose to bring your laptop and check the news every hour. You can scroll on your phone. You can call your kids. But really, the best retreats—and by best, I mean most fruitful, in my opinion—are the ones when you are, as the Carthusians say, “alone with the Alone.”

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Every retreat I’ve ever been on has been silent. I started going on them when I was in my mid-twenties, and they’ve always been in the same place—St. Therese’s Retreat House, here in town, about ten minutes from where I live. Silence has an appeal to me on a few levels—one, ever since my hearing went south, I like having a few days when I don’t have to listen to people, and try to understand what they’re saying, and two, because I also like to talk, it’s good for me to not talk. It’s good to just be quiet.

I realize that not everyone likes silence as much as I do, but I do think it’s important to shut up and listen to God every once in awhile, and that’s really what retreat is—that time to sit down, shut up, and focus on God for a few days.

Spiritually, we need retreat. We need it the same way we need vacation. (When I don’t take a vacation, I can tell. My body can tell. When I don’t go on retreat, it’s the same deal.)

I highly recommend everyone look into taking one, even if it’s a “quiet day” offered by a local parish, where it’s a few hours of silence, or a day of recollection. They’re important for our spiritual lives.

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So I’ve talked a lot about retreat on my blog before, but this time I thought I’d walk you through what happens. This is going to be a multi-parter, so here I’ll take you through Saturday morning.

A look at the “old” residential part of the retreat house.

These retreats run from around 5:00 on Friday to around noon on Sunday. They are usually “preached”, meaning that there’s a priest who will give talks around a certain theme. I’ve heard them preached on the seven deadly sins, Mary, St. Therese, and this one was about the Sacraments of Initiation and their Biblical roots. Every one I’ve gone to has been preached by a priest (which I prefer, because then you have access to the sacraments in an easier way than if, say, a sister/nun or a layperson preaches the retreat, and a priest has to be brought in). I try to go to one a year, but they’re offered twice a year, once in the fall and once in the spring.

The amount of talks vary—anywhere from three to five—this one had four. There is daily Mass and the opportunity for confession, as well as other devotional practices.

The important thing to remember is that you do not have to do any of these things. I mean, obviously, you went on retreat to pray, and you probably should go to Mass. :) But if you want to sleep in and miss morning prayer, that’s fine. If you don’t want to go to every conference, that’s fine. Etc. No one is taking attendance and no one will make you go or do anything. It’s your retreat.

Some retreat guides tell you not to bring books. I laugh at this. To me, books—spiritual reading only—are fabulous springboards into prayer or examination. I generally bring a few. I don’t read them all, and I’m not speed reading, but I do find them really useful, and I always have. If you don’t, then don’t bring them. Most retreat houses have books/a library/materials around for you to read if you want to, and they always have Bibles. (Bring your Bible, for sure.)

The retreat house/organizers will tell you what you need to bring. Towels, linens for the bed, etc. are provided, but if they don’t tell you, contact them and ask. (My first retreat I didn’t know linens and pillows were provided so I brought them! Ha!) You’ll need comfortable clothes. Generally, in my experience people tend to bring something a little nicer for the Sunday Mass, but it’s not a fashion show. You might want to bring a few snacks of the non-perishable variety. (I always do, because I have to take my evening meds with food. We get good meals at the retreat house, but no snacks.)

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The Lourdes Grotto on the property

I try to arrive early, as in before five, and check in. Once you check in your get your room assignment, so you can go unpack and settle in before the retreat begins. There are sign-up forms for volunteering to help with devotions and the Masses throughout the retreat—I always sign up to do one of the readings, because I really love being a lector at Mass and I rarely get the chance to do it!

I generally go to my room, unpack, set up my alarm clock (very important, since I won’t hear the bell that the retreat league uses to wake us up!), then go to the grotto (above), to pray a bit, usually a rosary. If the weather’s bad, I go to the chapel. This serves as a way to bring my mind into retreat and to slooooooooow down. It helps me forget about traffic, anything that’s been bugging me, any extraneous things—it’s just me and the prayers.

The retreat starts in the main conference room around 6:00, when one of the women from the retreat league welcomes us, talks us through the layout of the retreat and the house, and gives any housekeeping notices. Dinner is after this in the dining room, and we can talk at dinner. The food is always great.

After dinner, silence begins. This year, we didn’t have a conference on Friday night. We went right from dinner to Mass and vespers. Mass was at 7:45. (Dinner doesn’t take an hour to eat—so we were OK with the fast before Mass!) After Mass there was abbreviated Vespers (I said that plus my own Vespers from the Liturgy of the Hours [LOH]), and then after that, there were confessions with two priests. I went to confession, said my penance, and then went to my room to get ready for bed and go to sleep.

On retreat, confessions can be a little longer—people tend to confess more, in my experience, and priests also tend to offer a bit more counsel. So if you’re in line, be prepared to wait a bit, and remember that if you have questions or want counsel, the priest will give it to you too (usually. Some don’t.).

There is no “lights out”. You can stay in the chapel if you want. You can read in the main lounge. As long as you’re quiet, you can pretty much do whatever you want.

After confession I went back to my room with a cup of hot cocoa, took my meds, read a bit, and then went to bed. My alarm was set for 7, and hopefully it wouldn’t be so loud that it would terrify everyone else into awakeness. :)

*

Saturday morning

My alarm did not wake everyone, yay, but it got me up at seven. The bell rang at 7:30 but I like to give myself a little leeway to get ready—I don’t like to be rushed in the morning if at all possible. At 8:15 there was lauds in the chapel, and then we had breakfast. I had gotten to the chapel early so I said the LOH and had some mental prayer before we prayed in common.

Morning prayer

After breakfast at 8:30, we had the first conference of the retreat, setting out the general overview and talking about the use of light and dark in Scripture, echoes between Genesis and revelation, how water and light are used, and things like that—providing an overview to the Sacraments we were going to study. “Christ provides absolute concrete stability,” Fr. Stephen said. Which is true!

After the conference, we said the rosary in the chapel (joyful mysteries, since it was Saturday—I prayed for all of you!), and then had Mass, followed by lunch.

I was reading The Story of a Soul, which I hadn’t read in a long time, and I was also reading I Believe In Love, which is one of my favorite books ever, and is based on the teachings of St. Therese. So both those books complemented each other and provided a lot of material for prayer and pondering.

Meals in silence aren’t really that hard—you just have to be aware of what people want. Since I use my eyes more than the normal bear anyway (because I can’t hear as well as y’all can, so I have to use my eyes to survey the surroundings and get information), it’s easier for me to see when someone might want the bread basket or the water pitcher. There’s quiet instrumental music playing in the background, so it’s not silent silent.

In the next post I’ll talk about the rest of Saturday!

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

A Simple Life One: Reset Day

How can we, twenty-first century folk, who are super connected and crazy busy, create a life that’s simple, but yet is full of what we want—the good things of life?

How do we disconnect from all the crazy voices that surround us, and instead focus on the voice of God?

It’s not easy.

So I’m going to write an (occasional) series on how we can create simplicity in our lives, that gives us space and margin, but also is practical and do-able.

( Before we start:

I’m single. Yes. I know that makes my life easier in many ways. I’m only responsible for myself, all the food in the house is what I want to eat, I don’t have to clean up after anyone or put anyone to bed or take anyone to school.

At the same time, though, I also don’t have any help. No one else can go to the store or cook dinner for me. Everything I do, is done by me.

So I don’t want an argument in the comments section about how I’m single and I don’t know what I’m talking about, or how easy married people have it.

There are pros and cons to everything. The end. )

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One of my favorite things to do is make a list. I’m a huge list maker. So I’d suggest beginning that way here as well, by taking a “reset day.”

I discovered this from this The Art of Manliness post, and Kristin Foss also talks about it in her Daily Tidy workbook.

Essentially, you clear the decks, both physically (as in, your physical space) and mentally.

The Art of Manliness suggests taking a day off to do this. Now, again, I can do this whenever I want, because I have no boss. If you are like most everyone else, then you might want to approach this differently. Break each step down into days, i.e., one “hour” per day. (The things don’t all take an hour. at least not in my experience.) Break it up so you can do it at a pace that is doable to you. The post suggests that taking a day off might motivate you to stick to the routine you establish, because you’re giving up a vacation day to do it, and thus you won’t want to do it again. I think that has some sense to it. But if you can’t do that, then no sweat.

If you have children, I still think you can do this. The first step is to “clean the house”, but it’s really, do what you can in an hour. Put things away, do the dishes, take out the trash, make the beds—the “low lying fruit” so to speak. This isn’t the time to deep clean. It’s the time to deal with the surface clutter that nevertheless causes issues and creates frustration.

The second step, “Brain dump”, can be done anywhere, really. You can do it during your lunch break, at a coffee shop, after the kids go to bed, when they’re napping—really, whenever. You can do it right before you go to bed.

The third, “Take care of as many to-dos as you can”, is also pretty practical. Remember that, if you’re following the layout here, you’re limiting everything to an hour. You’re not doing to-dos all day, and the timed nature of it is what makes it helpful in my opinion. You can only do so many errands or to-dos in one hour, but anything you get done is better than nothing!

Steps four-eight, I’ll leave you to discover by following the link. But remember that it’s just an hour, and if you have to break this up over eight days, you can. Tweak it so it works for you.

By doing a reset day, you’re giving yourself a clean slate and eliminating little naggy things. You’re giving yourself margin.

Leila Lawler has a great post about how washing your hair and cleaning the floors can remove the sense of Futility About Your Life, and it’s true. Those little naggy things can make you feel awful—they take up so much brain space! By doing just a few small things, you can feel like a new person!

(For me, it’s vacuuming. When I have clean hair and I’ve vacuumed, I feel very content with myself and my life.)

And, also as Leila says, when you’ve gotten rid of this mental and physical clutter, you can free up your mind for other things (like prayer! And creativity!). (And I can’t find the post now and I’m going nuts, but trust me, it’s there somewhere!)

(Now, if a list-making totally overwhelms you…..then don’t make one, but I generally find the opposite happens. It makes me feel better about myself because it’s all there on paper!)

I think in order to start any talk about simplicity, we have to get things into at least a modicum of order.

So to this, I’d add a few other things:

Do you have a first aid kit?

Do you have wiper fluid and jumper cables and such in your car? (Because winter is coming!)

Do you know where all your important documents (birth certificates, passports, etc.) are?

If you want to simplify your life, get a reset day on the schedule.

I also suggest this post, from Auntie Leila: 10 Ways to Rescue A Bad Day

Of course there are lots of other things to talk about, and we’ll try to cover them—basic tidying stuff (because I am a work in progress here, aren’t we all?), cleaning, meal planning, finances, all that stuff. I’m not writing these because I Know All. I’m writing them because I have learned some things and in some areas I need more help, but you know, let’s get together and share our thoughts and help each other out!)

Amber

“The Song of the Lark”

Amber has joined my buddy Sage.

It’s sort of funny. It used to be that CF kids knew each other more than I did—we’d have wards and camps and so people had lots of CF friends. I never did, because that was all on the way out when I was diagnosed. I knew one kid from my first admission—Elvis (yes, that’s his name)—but I never saw him again after those two weeks of my first admit. (Although, in a strange twist of fate, one of my best college friends was from his hometown, and his mom was his teacher.)

There was Jenny, my freshman year of college—we were on the same dorm floor. I don’t know what happened to her.

But post transplant, I met more people with CF. Sage. Piper. People on Facebook. Kathleen. And Amber.

Unlike Sage, I had met Amber several times. She was the second transplant at our center (I was first, a fact that was a bee in her bonnet for awhile. Cracked me up.). She was younger than me, around my brother’s age (she was born in 1986). She’d been diagnosed with CF the normal way—as a little kid—but she lived nearer the Toledo center so that’s where she got her CF treatment.

We were both writers—she wrote a book called Breathtaking about her experience—and we both went to small Ohio colleges. (She had started at Cedarville University, but couldn’t finish because she got too sick, and eventually graduated from Moody Bible College.) She had a husband and they had adopted a little boy named Noah. He started preschool this month.

Amber had been in rejection for about two years, but she was a force. I mean, I’d never met anyone who was so unapologetic about herself, her life, her goals. She just told you whatever she thought, right out. “You can’t say that to people!” I”d tell her.

“Why not?”

Eventually, some of this rubbed off on me in dealing with our doctors. Ha.

She was just so unapologetically her. Honest, open, passionate, feisty. You always knew what she thought. But she wasn’t mean. She was just open in a way that a lot of people aren’t.

For two years she’d been driving from her home in northwest Ohio to get treatments at The Resort, to try to keep herself alive. There was talk of listing her for a second transplant.

I last saw her in July, at clinic. Clinic days are Mondays and so generally you tend to see other pre and post transplant patients at the same time in the halls and labs and in outpatient radiology. We got to catch up a bit, which was nice, because we hadn’t in awhile. She was carrying around a portable oxygen tank (when I say portable, it really was—it could be slung over your shoulder like a purse), but she was still fiery. Still giving me crap for wearing a skirt to the doctor’s. :-p “Comfort!” She said. And she was right, but I told her I preferred to use my feminine wiles to make the doctors do what I want. I was kidding, and she knew it, and we laughed about it.

I had seen on Instagram that she had missed an outing with her son to the zoo on Labor Day. But I thought she was okay. I have a news feed filter on my facebook app—basically, i don’t see scrolling updates anymore—so I had completely missed that she had been admitted with pneumonia and they had bronched her and she was in the ICU while they figured out a long-term plan.

I messaged her on Wednesday, to ask her a question about treatment. It was my brother’s birthday.

I got from his birthday dinner that night to find a message from her husband—Amber had died on Monday morning.

*

I don’t know why I’m alive, still, and Sage and Amber aren’t. Part of it is the idea that their journey, what God wanted them to do with their lives, was “complete”, I guess. And I’m not done. Which, I mean, is fine, I like being alive. But why me? Why not them too? Why are their husbands widowers, why is Noah without a mom, why did George the dog never see Sage come home? Why? Why do my siblings get to have me, and their siblings don’t?

I don’t know. I know God knows, I know He has his reasons, but I don’t know how much that really helps right now.

In Amber’s case, she had almost fourteen extra years. Her transplant anniversary was September 25. In those fourteen years, she wrote her book, she traveled to speak, she got married, she adopted Noah. She had extra time that she never would’ve had other wise.

But she was still only 33. Sage got an extra year of life, she had a wonderful husband and family and the sweet pups and even sweeter nieces and nephews.

I’m older than both of them.

A lot of people, post transplant, experience the feeling that they need to live for their donor. That they’re sort of entrusted with continuing the donor’s life as well as their own.

I never really felt that—probably because my donor was older, so it wasn’t like another 23 year old had died. (I’m not denigrating my donor’s gift, obviously! OBVIOUSLY. Just trying to explain how I feel.)

But I do feel, now, like I’m living for them. Sometimes I know Sage wants me to do something, to be brave and to ride it out.

And now I’ll feel Amber yelling at me to be honest and tell them how I really feel and figure stuff out, dang it. To just do x.

Both Amber and Sage had strong faith. I know that they’re happy. (I mean, one has to be happy when beholding the beatific vision, right?)

But gosh, I miss them both.

Miracles (and suffering)

(This might not make a lot of sense, but it’s something I’ve been thinking about this week, so I thought I’d share with you.)

How do you define a miracle?

Normally we use it in the sense of something extraordinary, out of the ordinary, that can’t be explained. Generally it’s a life-saving thing—a miraculous healing, a miraculous escape, a miraculous rescue.

And the other thing we tend to associate with miracles is perfection. The person is perfectly healed. The person is perfectly restored to life and health and family.

But is that true?

Jesus did a lot of miracles in the Bible. He still does them today. I know I’ve been the recipient of several.

But you know, Lazarus still had to die. So did the little girl.

I will die, eventually. So will you. So will your family.

(#LivingMementoMori, y’all! :) )

Sunset—no filter required—outside Orchard House.

Miracles are great. Believe me, I believe in them, as the song says. I believe in them strongly. I pray for them.

But I’ve never had a miracle that fits the definitions above—the “perfect” part. I’ve received miracles, but there are other aspects of them too.

I’ve lost hearing. I almost lost my arm. And those things, in the grand scheme of things, are small, because I’m alive. But when I was sick, I didn’t ask God for perfection. I asked Him for life. I asked for the chance to keep on living.

(In order to get my CF diagnosis, we had to switch pediatricians, which happened because my old pediatrician died. The connection of all of us in the grand story is impossible to unravel. )

Some people don’t get that miracle. Why did I get it, and Sage didn’t? Why are some people healed, and not others?

But there are other kinds of miracles—miracles of grace. The miracle of acceptance, of fortitude, of grace and cheerfulness and continued life even in the face of darkness and doubt and despair.

A miracle doesn’t necessarily mean perfection. It doesn’t mean that we get exactly what we want when we want it, because God knows so much better than we do, which is crazy to think about. What good was achieved by Sage’s death? What good is achieved by so many of the losses, of the pain, of the darkness? What good is achieved when babies die and people commit suicide and people starve?

I don’t know. And neither do you.

God does, though.

God sent His own son to die for us. Every single one of us will face death, and we will face pain and loss of those we love and things we can’t live without.

We beg for miracles. That’s true. That’s right. God wants us to ask for them.

But…..sometimes the miracle isn’t the physical miracle.

You know, Mother Angelica once said she could go to heaven with a broken body, but she couldn’t get there with a broken soul. That’s true.

Pray for the miracles. Pray for God’s intervention. Ask, seek, knock, beg.

But remember that if God doesn’t give you what you want, it doesn’t mean that He didn’t hear you. It doesn’t mean that He’s smiting you. It doesn’t mean that you didn’t have enough faith. (That one gets me, big time. Mary’s baby boy died—and no one had more faith than she did!)

Be thankful for imperfect healing. Be thankful for imperfect life. Be thankful for acceptance.

And the thanks might come on the far side of a lot of yelling at God, or screaming, or almost despair. God I do not understand.

You’re not alone in that. The apostles didn’t understand either. We can’t understand.

What we need to cling to, though, is that in every situation, in all circumstances, God is with us.

This isn’t airy fairy talk. This is talk I know. I know even in the darkest moments, in that valley of death—the real one, actual, true death—God is there, even if I don’t feel Him, and there are times when I haven’t. It’s not like I’m always walking around in a cloud of Blessed Assurance, y’all.

Miracles are gifts to us. But we aren’t owed them. I didn’t do anything to “deserve” getting a second chance at life.

The psalmist says that God’s ways are mysterious. There’s no better place to see that than at the precipice between life and death.

The miracle you might need the most might not be the one you’re asking for.

St. Dominic, the Innkeeper, and Twenty-First Century Preaching

El Greco, St. Dominic in Prayer

There’s a story about St. Dominic that’s familiar to every Dominican, and I think it has important implications for us today.

Here’s how the Nashville Dominicans tell the story on their website:

Two years later a diplomatic trip brought Dominic into the Albi region of Southern France. A strong zeal for the salvation of souls was enkindled when the young canon encountered an innkeeper who was steeped in the errors of the Catharists, a heresy which threatened the region. Although other religious had been commissioned to preach in the region, little progress had been made. After a long night of intense discussion, the light of truth prevailed and the innkeeper returned to the practice of the faith.

So let’s break this down. Think of a hotel. Imagine you’re in the lobby, getting something to drink before you go to bed, and you start making small talk with the desk clerk. You discover that he’s an agnostic.

You have a few options:

Don’t say anything. Just smile and say good night, but mentally pray for him.

Share that you’re Catholic. Don’t go any father.

Tell him that he’s going to Hell.

Say that you’re Catholic and spend the rest of the night trying to browbeat him into submission!

What did St. Dominic do? He talked to the innkeeper. All night. You can imagine that it wasn’t full of highly charged statements (like, hey, you’re going to Hell! Good night!) or polemics. It was probably logical—because we Dominicans love study—and it was probably methodical. And it was also probably gentle. I doubt the innkeeper would’ve stayed up all night if St. Dominic was banging him over the head with proofs!

There’s nothing wrong with a good discussion, including one that gets a little exciting.

My siblings and I are all half-Italian. When we have discussions, we get loud. We get boisterous. We use our hands! For people new to way we converse, you can think we’re arguing. (Growing up, our mother, who is not Italian, often told us to stop arguing. “We’re not arguing! We’re talking!”) St. Dominic was Spanish, so I wonder if he used his hands, too. Maybe!

But there’s a distinction between passionate arguing and getting personal. And on St. Dominic’s Feast Day, that’s what I want to talk about.

St. Dominic (detail) from “Christ Mocked with the Virgin and St. Dominic,” Fra Angelico

One of the mottos of the Dominican order is “Veritas”—truth. We love truth. We live to spread the truth of the Gospel all over the world! And that’s part of the reason we study, so that we can know what the truth is. Truth isn’t about what you think is true, or a “personal truth". (for example, children believe that Santa Claus, the Tooth Fairy, and the Easter Bunny exist. We could call that their “personal truths.” )

Truth is verifiable. Truth can be known. Sometimes, yes, there is mystery! We will never understand everything—and we’re not meant to. Some things are just beyond our reach on this earth. But we know the truth of faith because it’s able to be studied. It’s able to be seen. We believe in the truth of Jesus Christ. At Mass every week, we say the “credo”—”I believe”. This isn’t what just I believe, or what you believe, or what the pope beliefs, or what Fr. Patrick up on the altar believes. It’s what we have always believed, as a people, a family of faith.

If you are Catholic, you have to know what you believe, and why you believe it—and you have to assent to it. You can’t just say, well, that’s fine for you, but I don’t believe in Transubstantiation. (You would be….wrong!) I don’t believe in the Church’s definition of marriage. I don’t believe in Hell. Etc.

Truth is truth whether you believe in it or not. People believed the earth was flat—but it wasn’t. People believed that slaves weren’t people—but they were. People believe that unborn babies aren’t people—but they are. See how this goes?

It goes without saying that the truth needs to be spread far and wide. That’s part of what Dominicans do.

But, the question is “how to do it.” As the Wicked Witch of the West said, “These things must be handled delicately.” We can’t be too nice that we deny people the truth—because the truth sets them free, and truth is the best thing you can give someone! But we also can’t be so awful and hard-core that we turn people away from hearing the truth and listening to it.

Let’s take a story from the Bible. It’s one that’s familiar to everyone—the story of the woman caught in adultery. I’m going to quote it here, so we can all have it freshly before us:

John 8:3-11

The scribes and the Pharisees brought a woman who had been caught in adultery, and placing her in their midst they said to him, “Teacher, this woman has been caught in the act of adultery. Now in the law Moses commanded us to stone such. What do you say?” This they said to test him, that they might have some charge to bring against him. Jesus bent down and wrote with his finger on the ground. And as they continued to ask him, he stood up and said to them, “Let him who is without sin among you be the first to cast a stone at her.” And once more he bent down and wrote with his finger on the ground. But when they heard it, they went away, one by one, beginning with the eldest, and Jesus was left alone with the woman standing before him. Jesus looked up and said to her, “Woman, where are they? Has no one condemned you?” She said, “No one, Lord.” And Jesus said, “Neither do I condemn you; go, and do not sin again.”

Do not sin again. That’s the crux, really. We are all sinners. Every single one of us. I am, you are, everyone. None of us is without sin. But Jesus doesn’t say to the woman, “Oh, what you did is fine. Go ahead, go home, it’s all good.” He said, I don’t condemn you. But don’t sin again. That’s what happens when we go to confession—we have to promise to try not to sin again. We can’t just think, oh, I can do what I want, because confession!

Jesus loves us more than we can possibly imagine. And because he does, he doesn’t want us to keep messing up. It makes him sad! Do parents like it when their kids make bad choices? No! But are they angry? Maybe. Are they disappointed and sad? I think this is probably more likely. (I mean, they might be angry at first. But I think then it becomes more sad/disappointed.)

When we discuss heated issues in the twenty-first century, we are not good about being gentle about it, like Jesus is here. Now, yes, Jesus also turned over tables in the temple. Sometimes we can be righteously angry. I get righteously angry whenever I talk about disabilities or abortion. That’s my thing. But if I slip and start calling people names, or want to incite violence against them, I am sinning.

We can be preachers of the word. We have to be, both preachers of the word and doers of it. We have to live the life of Christ. Sometimes that means standing up for people. Sometimes that means living a quiet life of witness. Sometimes it means both!

If you want to make your point, if you want to convert people, you aren’t going to do it, usually, by violence or hatred or name calling. We need to stop doing that. We need to do it like St. Dominic did it—gently, with facts, with truth, and then….step back. See how it goes. Conversions aren’t instantaneously. St. Dominic famously cried, “Oh Lord, what will become of sinners?” He cared about them. He didn’t just want to score a point like in a college debate match. He didn’t want to just win. He wanted the other person to see the truth because it would save them.

Politics in America has always been nasty (see the Election of 1800!). But we must stop seeing each other as enemies across a divide. We have to state our position, but also realize that we can be friends with people who don’t vote the way we do. In fact, we are required to love them.

I know things get heated in the public realm. I worked in politics for 10 years. I saw it, up close and personal. We cannot want to kill our opponents, guys. We can’t approve the shooting of congressmen and women because the victim disagreed with us! What kind of people will we be then?

A story was told to me by the first legislative aide I worked with, who had been in the senate a long time. She said that senators used to argue like crazy on the floor, and then go out to dinner together. They were friends with each other. That was becoming rarer and rarer

Christianity isn’t a religion for wimps. Jesus doesn’t ask us to be a doormat. He asks us—and St. Dominic shows us how—to preach the truth, to live the truth with our lives, to pray for our enemies. We can have discussions—even loud Italian ones! We can be passionate! I’ve always been passionate when talking about the Church.

But there’s a fine line between being passionate, and being so whipped up into a frenzy that you can’t see the human being on the other side.

St. Dominic saw the humanity in the people he met. That’s what drove him to preach—his concern for them and his love for Christ.

Does the same thing compel us?

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! :)