The "Brave New Us" Podcast Interview is Live!

I was so privileged to be interviewed by Samantha Stephenson for her Brave New Us podcast! This episode is about genetic illness and genetic manipulation: Should we do it? Why or why not? I had a great time talking to Samantha and I hope you enjoy our conversation! You can listen here.

Seven Quick Takes: Bioethics and Knitting!

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Hi! Tomorrow is St. Dominic’s Day! YAYYYY!

The Virgin Mary with St. Dominic and St. Hyacinth

So pray the rosary today, because the DOMINICANS GOT IT FROM MARY. :) One of the reasons I love being a Dominican!

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Sometimes I talk about bioethics here. Today is a crash course.

One of the things I get a lot of is, “Does the Church [The Catholic Church] permit organ transplants and organ donation?”

Quick answer: Yes.

“What about from brain dead people?” (aka, neurological criteria)

Answer: yes

This…is a point of contention for some Catholics.

The National Catholic Bioethics Center talks about this all in detail. Here, to make it one-stop shopping, I am listing the following for you!:

organ donation: Church documents, Ethics & Medics, FAQ and Summaries, podcasts, Press Releases and News, Statements, book store items

the most important, and probably useful thing, to most of you, is this: FAQ On the Determination of Death Using Neurological Criteria.

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So, if you don’t want to read all that…..cut and paste!

What is brain death?

“Brain death” refers to the medical judgment that a person is dead, determined by neurological criteria. Properly diagnosed, brain death means the complete cessation of all organized neurological activity throughout the entire brain, including the cerebrum, cerebellum, and brain stem. When all brain activity has ceased, the body irrevocably ceases to function as a unified whole. The appropriate phraseology here is “the determination of death using neurological criteria.”

It is appropriate to use this criteria?

The customary criteria for determining death are "cardio-pulmonary," i.e., death is declared after breathing and heart-beat cease. Technological advancements in critical care, however, have made continued circulation and respiration possible through mechanical means even after brain function has ceased. The use of neurological criteria for the determination of death can be legitimate according to the Catholic Church. In an address he gave to the [18th International Conference of Organ Transplant Specialists][1] in August 2000, Pope Saint John Paul II observed that their application, if rigorous, “does not seem to conflict with the essential elements of a sound anthropology.” He further stated that “a health-worker professionally responsible for ascertaining death can use these criteria in each individual case as the basis for arriving at that degree of assurance in ethical judgement which moral teaching describes as ‘moral certainty.’ This moral certainty is considered the necessary and sufficient basis for an ethically correct course of action.” Neurological criteria consist of three basic signs: deep coma or unarousable unresponsiveness, absence of cerebral and brain stem reflexes, and apnea. Pope Pius XII and Pope John Paul II both said the Church has no competency in determining death; this properly belongs to medical science. [1]: http://www.vatican.va/content/john-paul-ii/en/speeches/2000/jul-sep/documents/hf_jp-ii_spe_20000829_transplants.html

Can a Catholic receive an organ transplant?

Yes, a faithful Catholic may receive organs from a donor who is declared dead by neurological criteria. A faithful Catholic may also make provisions for the donation of his own organs in the event of his death whether it is determined by cardio-pulmonary or neurological criteria. Reasonable doubts about the rigor with which the determination of death would be made, however, may warrant caution.

Now, note that last part. In some places, like China, organ harvesting takes place in, um, less that salubrious ways. (To put it REALLY mildly.) So yeah, if you’re in a. place where there was be questions about this…..then yes. You can ask. You can say you don’t want a transplant.

I can say, myself, that if the Church said no to transplants, I would not have gotten one. Full stop. End of discussion. I’m dead serious. (Really, dead serious, because I would’ve…been dead! Oh, my black humor sometimes.)

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OK I think we’re done with the serious now. :) But yes, the Church, like the rabbi said in Fiddler on the Roof, has a position on everything! :)

(In Fiddler, it’s, “Rabbi, Is there a blessing for the Czar?” “There is a blessing for everything my son!…May God bless and keep the czar….far away from us!” )

Check the Catechism. In fact, you do have a Catechism at home, right????? (Because seriously, you should.)

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I didn’t do a yarn along this week, but next week! Yarn! But here’s a peek at Patty’s baby blanket….

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If you want a signed book, email me; they’re $20 and include a book mark, prayer card, AND shipping! It’s time to start thinking about Christmas! :) :) I also have an ebook!

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Book club is still happening! My BGLs have been nuts so it’s sort of thrown off the schedule, but it you want to jump in, you can! All the previous videos are on my Facebook page. On Tuesday we’ll be meeting at 3:00 EST!

Billy Love

Getting to meet Billy on Sunday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

—Revelation 21: 4-5

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

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

How to be your own health care advocate

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

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

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

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

Know your baseline.

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

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

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

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

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

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

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

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

All drugs have side effects

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You have to know your medical history

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

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

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

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

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

And finally….

Be aware of change

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

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

Seven Quick Takes--The 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.

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

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.

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

Linking up with Kelli!

-1-

Around these parts this week:

Doing the best you can with what you have

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

-2-

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

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

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

Free. Gratis. No charge.

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

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

If you need one IMMEDIATELY, call them at:

888-433-6934

They answer the phone 24 hours a day.

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

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

-3-

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

-4-

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

NOPE.

Washer Monster wanted to eat it.

via GIPHY

But my lovely maintenance man here saved it! Yay!

Yay! It’s saved!

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

-5-

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

-6-

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

-7-

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

Doing The Best You Can With What You Have

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

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

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

And the answer is, probably not.

So I thought I’d write about this.

*

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

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

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

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

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

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

Which saved my life.

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

*

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

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

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

But—what were my choices?

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

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

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

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

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

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

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

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

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

Day In the Life: Yearly Transplant Testing

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

6:30 am: Alarm goes off.

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

It’s not raining! Yay!

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

Excellent parking!

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

7:50: Heading to Crossroads Registration

dooooown the long hallways.

I passed this bunny on the way in:

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

Up we go!

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

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

It does, however, have a good vending machine.

Anyway!

8:00 Infusion

In the waiting room—Muppet Babies on TV.

Great view, huh?

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

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

My great nurse comes in and sets things up….

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

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

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

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

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

Hallway out to the waiting room.

Doooown we go.

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

(Bunnies ahead!)

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

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

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

8:40 AM: Chest X-ray

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

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

(Yes. There are two gift shops)

Sharkbait!

Past the coffee bar….

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

9:00 AM: Clinic

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

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

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

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

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

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

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

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

Finally, Pulmonary Function Tests, aka, PFTs.

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

You then get results that look like this:

swirly bit is blocked out personal info. :)

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

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

11:00 Finished clinic, back to radiology!

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

past the fish….

And back to radiology.

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

FINALLY, the LAST TEST!

11:45 am: Chest CT

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

And into the CT room:

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

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

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

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

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

Seven Quick Takes--You Are Not a Mistake

Linking up with Kelly!

-1-

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

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

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

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

You deserve to be here.

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

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

—II—

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

-III-

Remember Pope Benedict:

-IV-

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

Because, seriously, folks. Seriously.

-V-

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

-VI-

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

-VII-

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

You are not a mistake.

via GIPHY

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

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

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

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

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

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

So, yeah, it’s a lot.

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

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

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

Because that doesn’t exist.

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

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

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

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

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

(Not too much freedom. But enough freedom.)

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

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

But here’s what it comes down to:

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

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

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

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

Go live your life!

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

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

Seriously. Do what the sign says.

Live your life. Take your brain with you.

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

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

Seven Quick Takes

Linking up with Kelly!

—ONE—

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

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

—TWO—

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

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

—THREE—

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

—FOUR—

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

And you can help me!

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

—FIVE—

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

—SIX—

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

—SEVEN—

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

Burdens

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

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

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

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

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

“We want you,” my parents said.

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

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

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

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

• Monthly blood draws when I was a toddler.

• Driving to Cleveland in a snowstorm for an appointment.

• Many many many overnight hospital stays

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

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

• Many insurance phone calls

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

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

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

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

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

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

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

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

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

(c) Erica Kay Photography

and some theology

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

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

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

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

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

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

Because it doesn’t work that way.

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

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

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

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

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

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

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

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

He always loves you, too. No matter what.

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

—John 9: 1-3, NABRE

Med-sanity II

My coffee machine died yesterday. It was speedily replaced, so let’s think about the wonders of coffee and lovely rainbow colored tea tins from David’s! :)

I was supposed to have a procedure done on a skin cancer on my ear today, but that’s not happening. Because….sigh.

A little background. While CF is becoming less of a “childhood” disease and more of an “adult” diseases, adult hospitals have not caught up. I’ve been in several, and what I’ve noticed at 98% of them is that the doctors and staff cannot look at someone “young-ish” and see chronic disease. They think that anyone under 50 must have been perfectly healthy her entire life and thus, can just do whatever they want.

WRONG.

A few examples:

• You can’t do an MRI on me. Magnet in my head.

• You can try to put in a PICC line, but it won’t work. My veins are all scarred over from the years of previous PICC lines.

• You can’t use adult sized needles on me; my veins can’t take them. You need baby sized needles, small child sized needles. I have small child sized veins. And you also have to be good—you can’t just look in the crook of my arm or my hand like you could with a regular adult. I’ve had IVs in my shoulder. I’ve had them in my thumb.

And, what’s pertinent to today’s discussion: I am on many* meds for a variety of conditions. You can’t just prescribe a drug for me without looking at side effects and being aware that they might happen.

This is relevant because, as I wrote in the previous post, when you already have mental health issues, you tend to not like drugs that can make those worse.

So, when I (my mom) called the doctor about the side effects I was having—supreme irritability, mood swings, etc.—the nurse said, well, stop the med and I’ll talk to the doctor.

OK. Done.

We (mom and I) get a call a few hours later when we’re at dinner. The nurse says that 1) the doctor doesn’t think the med is causing the issues, but stop anyway 2) they cancelled my appointment for today and 3) they want me to go to my “PCP” (primary care physician) to have my “mental stability” assessed.

That last point is sort of an insult, frankly.

I’ve been seeing a psychologist since I was 16. I’ve been on a medication for anxiety for that long. My doctors KNOWS this. It’s in my freaking chart, that I take this med. I am not unstable, but yeah, the med you put me on? Made me a littleeeeeee irritable and sort of unhinged. Yeah. But that doesn’t mean I’m going to flip over procedure trays and get into WWE fights in the waiting room. Stop the med and I’ll be fine.

It’s like when I do a steroid bolus. It makes me SUPREMELY cranky and irritable. But I know it’s the meds and the courses are usually short. In this case, the med isn’t even necessary, there are other ways to treat this guy. I’ve had lots and lots and lots of terrible medications in my life that have given awful side effects, but they’re necessary so I suck it up and deal with it. This isn’t necessary.

Second, I don’t have a GP/PCP. I TERRIFY GPs, because I’m complicated. The ones I’ve met are usually afraid to do anything to me because they don’t want to mess things up. So my “GP” is my transplant pulmonology team.

Third, read my freaking chart. Really. It comes back to this all the time with adult hospitals and physicians. “Do you have lung issues?” Seriously, I was asked that question. (Not by this doctor. Another wonderful adventure years ago.)

So a procedure today had to be rescheduled for next month, and I have no idea what we’re doing with the cancerous spot on my arm, except I’m not taking the med anymore to treat it.

Which brings us to the big lesson, here:

I have lived in my body for 36 years. I have a very, very well-tuned—exquisitely well-tuned, I’d say—sense of status within it. I know when “something is not right”, to quote Miss Clavel. And I don’t think I’m exaggerating when I say that that instinct, and my parents’ equally honed instinct, has saved my life on a few ocassions.

Doctors and medical people need to listen to me. I’m not always right. But when I say something is the med, it’s the med. When I say X is happening, and it’s because of Y, it probably is.

It’s basic science. When you do an experiment, and you add a variable, an things go haywire—it’s not because of everything that came before. It’s the variable you just added. That thing has pushed the balance over the edge. Remove that thing—balance restored.

*I am on vastly fewer meds now than before transplant. That being said, I’m still on what the average person would consider “a lot” of meds.

Sage's Shawl

Yes, it's Wednesday. It's a yarn along post. But....not really. 

When I finished my first Drachenfels shawl, I knew I wanted to knit it again. My head was full of color combinations and possibilities. In May, I ordered a special edition yarn from Quince and Co (carnation--the pink above) and knew I wanted to use it in this shawl. The question was--what to pair with it? 

When I went to Sewickley Yarns in July, I brought the ball of carnation yarn with me so I could color match. Immediately, I latched on to the green color you see above. And then I checked the tag. 

It's called "Sage". 

Then I knew I had to have it. 

Some of you may remember my friend Sage, who died two years ago Friday, waiting for a double lung transplant. Like me, she had CF. And we had so much in common besides that. She was a true kindred spirit. We spoke (well, texted) almost every day. She was funny, supportive, deeply faithful, and just....well, a perfect friend. 

We never got to meet, but we had made plans for it...in that nebulous future moment of "post transplant", the transplant I was just so sure she'd get. 

She didn't. 

I think about her almost every day. I think of things I want to tell her and then I realize I can't. 

So when I saw the "Sage" yarn, I had to get it. And then I had to get the purple (Frank's Plum), because purple was her favorite color. It's also the color for CF awareness. 

I wish I could give her this shawl. I think she'd like it. I know she'd love the purple. I dunno how she felt about pink. But since I can't give it to her, I make it for me--and when I wear it, I can remember her encouragement, her sense of humor, her strength (really, she was so much stronger than I am. Anyone who gets a chest tube put in WITHOUT ANESTHESIA is MUCH stronger than I am.). 

Some people, post-transplant, talk about living for their donor. I never felt that way. My donor was a lot older than I was, for starters, so it wasn't like she was a compatriot in age. But after Sage died, I do get the feeling that I'm living for her. That I do some things because she can't. It's hard to explain. 

I'm at the halfway point of the shawl. For the rest of it I'll be working with the pink and the purple intertwined together. I should finish it within the next few weeks, which means I can wear it this autumn. 

So, if Sage was alive, I'd give this to her. But since she's not here, I'll wear it for her. 

Thirteen

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

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

My brother got married

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

My sister got engaged

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

I saw the Stanley Cup with my parents

I went back to Williamsburg and Duck 

I started writing and editing for Take Up & Read. 

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

I knit my first shawl. 

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

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

I would've missed my brother's wedding. 

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

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

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

I try not to think about that. 

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

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

And that about sums it up. 

Thirteen years of overcoming is pretty good. 

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

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

The Big Bad Wolf

I’ve had depression and anxiety issues since I was 15 years old.

Maybe I was born with them and just never really had an episode until I was 15, and I had a TB diagnosis that came really late and almost killed me. “This is just what CF is,” said a doctor in my CF clinic. But when I started coughing up blood, my regular doctor decided to look a little deeper, and she found I had non-infectious TB, something that only 4% of the CF population ever gets.

So it was a brush with death that hit a little close to home. TB is called “consumption” for a reason. It consumes you. The meds made my stomach hurt so much that eating made me cry. I cried thinking about eating ice cream. Who cries about eating ice cream?

The TB seemed to awaken this depression and anxiety in me. I became afraid of the dark. I had no energy, no interest in anything. It was the only marking period in my high school career where I didn’t make the honor roll (and you needed a 3.0 to make the “basic” honor roll). I stopped voice lessons.

I don’t know if many of my friends noticed, but it took awhile to get over the feeling of intense worry and doom (and that’s not too strong a word) that hung over me. As spring and summer came, I slowly got better, both physically and mentally.

Of course as my body recovered, that helped my mental health recover too. The two are linked. But what also helped was my fabulous doctor discerning that I probably needed some additional help, in the form of both a psychologist and medication.

She approached it very gently and made it clear that it wasn’t a mandate, it wasn’t that something was “wrong” with me or that I was “crazy.” She thought that it would be the best way to keep me healthy going forward, and she was right.

I’ve seen my therapist regularly ever since--that’s more than twenty years now, with the same woman. She’s not allowed to retire, ever, basically.

But I’ve also taken medication. It’s changed, over the years, because of drug interactions. But I need it--I can’t go off it, or I get a little unhinged.

I should probably describe what “unhinged” means for me. It means that I start worrying about everything. I feel like I’m a burden to everyone, that nothing is going to go right, that my body is my enemy. I have trouble breathing and have a lot of chest pain. Now, as I say that, I can differentiate between the Big Bad Wolf of anxiety/depression as opposed to the chest pain and troubling breathing of a pneumonia or lung infection. They are different, and I can tell said difference. Some of that is just being older and learning how my body reacts, and what else is going on.

If it’s emotional, then I’ll be very withdrawn. I won’t want to go out. Everything will be much harder than it should be. I will be cranky and cry at the drop of a hat.  I won’t want to leave my house, get dressed, or do anything other than sit on the couch. I won’t even want to read.

It’s not good for me to be in my head that much.

And the other thing I’ve noticed is that most people get seasonal depression in November/December. For me, it’s right now--it’s June/July. This time of year is not a good time of year for me. Maybe because I’ve had a lot of home IV bouts, hospital stays, and work stress in early summer. Last summer I noticed this for the first time….I really don’t like June and the beginning of July. But after the beginning of July, around my transplant anniversary, things start to lift.

I don’t know if it’s PTSD or what. I hate to think it is PTSD because I honestly don’t think of my life as traumatic. But whatever it is...I know it now.

So I’ve talked to my doctors and we’re upping my medication dose for a little while, until I get over this patch. It’s helping already--so that was fast.

I don’t react well to lots of stress, either--so when you combine stressful events PLUS this time of year, it’s really not great.

And part of it is I need to be less nice. I need to stop worrying about making everyone else happy and worry about making myself happy, or, at the very least, healthy. That’s gotten me into trouble before, the idea that I have to do everything even when my body says no. I have to stop letting other people’s expectations dictate what I do--and that’s a lot easier said than done.

I hate to let people down. But at the same time, if I was honest with people, then I bet they wouldn’t want me to run myself into the ground and into the black hole for them, because there’s nothing I do that’s really that important. Let’s be honest. I’m not running the world here.

That’s one thing I want to say to people who struggle like I do: life is not an emergency. (Thanks, Ann Voskamp.)

You are not running the world.

If you have to take a day off, you can do it.

But you have to be vulnerable and tell people that.

And that is hard.

I know it’s hard.

I’ve wanted to write this for awhile, but I’ve been afraid of what people would think or say or how they’d view me.

But you know, we need to be honest, guys.

We need to bring this stuff out into the open.

There are not enough people talking about depression and anxiety and how we just deal with it every day.

We talk about cancer and everything else, and I talk about my transplant.

But sometimes we need to talk about this stuff as well.

Because it happens to everyone--those with faith, and those without. Single and married. Poor and rich. Every color, every race, male and female.

So, here we are.

I’m writing about it.

And I hope that this helps someone, even marginally.

I look really happy most of the time. But that doesn’t mean I am happy.

Sometimes it’s all too much and I need a break, but there’s a difference between a break that I call for rationally, and a break that is imposed because my mind is going five million miles an hour and I just need to clear the decks.

In fact, that’s a good description of what my medication does. It helps me clear the decks and be rational and logical and awesome.

I think I’m going to write a few posts about this. This one is a good starter, a good ice-breaker.

The take away is this: Get help. Ask for help. Be honest and vulnerable, and you’ll be surprised at how people will support you. (If they won’t support you, then you don’t need them in your life. Full stop.)

For me, this was the hardest part. Being vulnerable is NOT something at which I am good.

But it’s worth it.

Doctors, Death, and Alfie

Unless you're brand new, you guys know how i feel about end of life issues. 

But I see that lately, there's some confusion about ethics when it comes to these issues. So, I thought I'd work them out here, from a Catholic perspective, and also from the perspective of someone who has lived with death, intimately, many times. 

The first thing we need to understand: hospice care/ palliative care is not the same as assisted suicide.

Hospice/palliative care is used when a definitive diagnosis of death has come down--usually, it's going to happen soon (the "six months to live" thing), but it doesn't have to be. Hospice is a legitimate choice. Here, the patient has decided that the only thing she wants is comfort care--she doesn't want heroic measures take to preserve her life (meaning, ventilation, ICUs, etc.) The patient wants to die, peacefully, at home or in a hospice care center, with family around. 

I could have chosen hospice care instead of going for a transplant, and it would've been a legitimate choice, because there were no other medical options left. This is what Barbara Bush did at the end--she decided, I don't want all this. I just want to die peacefully, with my family around me. This is totally legitimate. Now, this might involve IV fluids, for comfort, or medication, for comfort. But the person has come to grips with death, and has decided she doesn't want any more medical treatment. Again--this is legitimate. 

When hospice is taken, it means that the patient knows there isn't going to be a cure. Curative treatment has generally stopped. 

But hospice is truly death with dignity. 

Assisted suicide is not. Assisted suicide is when someone gets a medical diagnosis and decides that, instead of dealing with this by the hospice route, it would be better to die now. I have little sympathy for this view. You can read about my feelings here.  

Assisted suicide means what it says--the person wants death, and wants it immediately. This is legal in some states in America. That makes me very sad. 

And this brings me to Alfie. 

I love doctors. Doctors have saved my life. But doctors have also almost killed me. 

Doctors are not infallible. Doctors can be wrong. 

Now, this is where a fine line exists--there are times when families want doctors to be wrong, desperately. They want to believe their loved one is still alive. However. 

If a person is dead--there are tests that prove this. For brain death, there is criteria. 

If a person is dying, then we generally know this. But this is where it gets tricky. A doctor can say a patient is past the point of no return. Doctors told my parents that, when I was 18 and in the ICU. The doctor, clearly, was wrong. Sometimes doctors don't do the digging. They don't commit to the patient. They just write a patient off. And that leads to, well, she's going to die anyway. 

(We're all going to die anyway....)

But--just because a person is suffering or very ill--that does not mean we move in to kill them. 

Denying air, hydration, food, to a person in a coma, a persistent vegetative state, or what have you--that is unconscionable. That is not the same thing as hospice. That is killing someone. It's no different that putting a pillow over someone's face.

In case you're new to the Alfie case, quick summary--the boy has a neurological disorder that the doctors haven't figured out. It's destroying his brain. The doctors have decided that nothing more can be done, and so they took him off his ventilator. Alfie is breathing with only the assistance of oxygen cannulas now (no mechanical ventilation). He is continuing to breathe. The hospital has now given him oxygen and hydration, I think.

The parents wanted to take Alfie to another hospital for treatment. The courts in the UK have denied the parents this, because in the UK, the parents aren't the final arbiter of the child's best interest--the doctors are.  

Guys, this is terrifying. I love doctors. But doctors can be wrong. Three doctors, at least, were wrong with me--and almost killed me, three times. 

Doctors have also saved my life--three times--because they didn't listen to the first doctors!

The doctors decided that Alfie will never get better. That he is suffering. So it's better to end his suffering....by killing him. Because they don't think he can get better. So...it's better than he's dead. 

That's the same thinking that undergirds wrongful birth suits. And we know how I feel about that.  That a life with suffering is not worth living. 

I wish I didn't have to write about this stuff. But I do. And it makes me sad that I do. 

Guys, please, don't think that these things are all the same. They're not. End of life issues are complicated, but please educate yourselves.