One Year of Peloton

You might remember that are my yearly appointment in 2022, my team told me that I had to—definitely—start an exercise program.

Up until that point, I’d never really had one. I’d done some things sporadically, I’d done a 5K the year after my transplant, and I’d gone to barre, ballet, and yoga classes on and off. But I’d never really had a set program that I did consistently.

Now it was time to get one.

Today I’m going to walk you through my program, do some before and afters, and talk about general fitness-y things.

The first thing I did was sign up for the Peloton app. Two things, right off the bat:

• This post is in no way sponsored by Peloton. It’s what works for me so I’m talking about it, but I don’t get paid to say any of this.

• I do not have any of the Peloton equipment (the bike, the tread, the row). I use the app exclusively, and use the treadmill in my complex gym for my walks.

The “super goal” as it’s called in the goal setting world, is to be working out every day for 30 minutes, with one rest day (Sunday) per week.

I was starting at zero, so this goal is still in progress. I am working out almost every day, but not for 30 minutes, generally.

As I’ve talked about before, my body is weird. I have about 54% lung function, which is good for me, but it’s half of a normal person’s. I have a wonky right knee and right Achilles’ tendon, as well as tight hamstrings. I say this to lay out what I am dealing with and how my routine has helped me here.

So, all that aside, here’s how it goes:

I break my workouts down into several areas: cardio (swimming, yoga, walks), strength, stretching and mobility, and I use the peloton meditation classes. (I don’t meditate, per se. I use these to help with stress and relaxation before bed, because keeping stress low/manageable is a big part of keeping blood glucose levels in check.)

For cardio: I do the treadmill walks on the app—usually 20 minutes, but sometimes 15 if my day is packed and I need to get a workout in. I have done one 30 minute session so far.

When I first started—being totally honest here—I could barely hit 1.0 on the treadmill. Now I’m at 2. (On my treadmill. The app says I’m going about 2.5 on my speed, but speed varies on treadmills).

When I first started, I couldn’t follow any instructor cues (to go faster or to increase incline). Now, I do follow them (within reason—I’m not ready for 6 or 8% incline—yet), and I like them. The app also offers hikes, which I’m going to try for the first time this week! The highest incline I’ve hit so far is 4%.

I also swim in the complex pool, which is a little harder to do regularly, because I have to have room to swim, and in a shared pool, that can be hard to do. I don’t swim fast enough to feel comfortable at a Y or JCC pool doing laps. As you can see above I’ve started tracking my swims with my Apple Watch. I’m hoping the pool will be open for a few more weeks so I can get in more sessions, because swimming really is my favorite cardio. (It’s generally open May-September.)

I count yoga as cardio; I know some people don’t, but when you have the lung function I have, even slow flow classes count for getting the heart rate up. I’m trying to be more consistent here after doing a week long yoga program on the app earlier this summer. There are a wide variety of classes. I almost always do a restorative yoga class once a week because these are great for opening up my chest (very important in the pulmonary world), releasing tight areas, and also reducing stress. (There is actual science that backs up how yoga can help lots of health conditions, CF being one of them; check out the book Yoga as Medicine* for more on this.) Obviously restorative yoga is not cardio, but my body really likes it.

A look at the yoga classes I’ve taken.

For strength, I do the 10 minute arms and light weights on the app. For these you use 1-3 pound weights, with the objective being lower weights but higher reps. I’m currently using the 2 pound weights and I might be ready for the threes, so that’s a huge improvement from the no weights I used when I first started. I love these classes. I’ve dropped a shirt size since I’ve started doing these.

For leg and core exercises (which are also works in all the other things I do) I do things like wall sits, plies, pelvic tilts, etc.

Stretching and mobility is also really important to me. I always do a lower body stretch after a treadmill session and I stretch out my arms after weights. Sometimes I do a really focused 10 or 20 minute stretch like you see above with the “hip mobility”. My legs get very cranky if they do not get stretched out regularly.

Here’s what this looks like in a normal week:

Monday: Restorative Yoga

Tuesday: 10 minute arms and light weights

Wednesday: Treadmill session with stretch after

Thursday: 10 minute arms and light weights

Friday: Treadmill session, restorative yoga.

Saturday: 10 minute arms and light weights.

Stretching and swims are added in as possible.

I want to add in more dedicated yoga classes, possibly on T or Th, and I also want to experiment with some other strength classes on the app.

I am much stronger and fitter than I was a year ago, an I can’t wait to see what gains I can accomplish in the next year!

Eighteen

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

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

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

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

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

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

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

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

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

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

Cheering on her favorite baseball player with Mommy!

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

So many things I would have missed.

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

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

---

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

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

I'm In Public Discourse! (And a sale!)

I’m very excited to share that an essay of mine has been published in Public Discourse!

This is my first journal piece, and I’m very excited about it. In it I talk about how transplants work, the gift of more time, and (yes, of course) memento mori!

Let me know what you think!

And speaking of the book…

The Ave Maria Press Memorial Day sale is here! Through Monday, use the code REMEMBER23 for 25% off and free shipping. This is a great time to pick up a copy of Living Memento Mori (or get gifts for people!)

I hope you have a great Memorial Day weekend!

Transplant 101: How Transplants Work

One of the best parts of post-transplant life—having nieces!

It’s the end of Donate Life month, and I’ve realized that a lot of people don’t know how transplants actually work. As in, I think a lot of people think that you have the transplant and….that’s it! Poof! Magic!

As much as I wish it were Poof! Magic!, it’s not quite that simple.

The big barrier for transplant wasn’t the actual surgery; surgeons knew how to do that part. The issue was keeping the body from destroying a foreign object, ie, the donated organ (s).

Your immune system is exquisitely calibrated. It knows what’s “you” and what isn’t you, and that’s why it works—it fights things that aren’t you (ie, pathogens) so that you don’t get sick. It likes to kill things that don’t belong, and while that’s great when it’s germs it’s killing, it’s not so great when it’s a vital organ.

So transplants couldn’t happen until immunosuppressive drugs were found. These drugs do what their name says—they suppress the immune system, basically hacking it so that it doesn’t work as well, which means it doesn’t try to kill the thing that “isn’t you”, but is keeping “you” alive. When the body tries to kick out the transplanted part, that’s called rejection. (Rejection is complicated, and there are different types. I’m trying to keep this simple, so I’m just calling it all rejection.)

Your chances for rejection are highest immediately after transplant. At this point in my post-transplant life, rejection isn't really a huge concern. Bu right after, it definitely is the highest concern. So the immunosuppressive meds are at their highest doses immediately post-transplant, and in the years following. As you get father out, the meds decrease.

I’m on three types of medications, broadly:

• Prograf (tacrolimus), aka, “tac.” This is my immunosuppressant. I will take it the rest of my life. When I first had my transplant, I was on a higher dose than I am now, and I was also on another immunosuppressant, which we dropped many years ago now.

• Steroids, which are also immunosuppressive. I am on five milligrams of prednisone, and I will be on that for the rest of my life. Doctors are now starting to experiment with taking people off steroids a few years post-transplant. We tried that with me, but my body did not cooperate. (My body likes steroids, because I have CF related arthritis. Steroids make joints happy!)

• Prophylactic antibiotics, meaning, I’m taking these not because I’m sick, but so I don’t get sick. I take azithromycin (if you’e had a Z-pack, you’ve had this med) every day. I like to compare myself to a chlorinated pool.

• I also take a few other things that aren’t directly related to transplant/immunosuppression.

Now, keep in mind that we have to “hack” my immune system on a daily basis so that it won’t figure out that my lungs aren’t mine. That’s what these drugs do. I will take them forever and ever, amen.

It is a delicate dance—we want to keep my immune system in the dark, so to speak, but we also don’t want it to be so suppressed that I’m getting every single germ that’s out there. That’s not good.

At this point, what my team and I are worried about treating are the side effects of these medications. If you hack your immune system for seventeen plus years, as we’ve done for me, it’s going to….well, not work right! This puts me at a much higher risk of cancer, especially skin cancer, which is why I see my dermatologist for a full body check every six months, and why I check myself over regularly and am very aware of anything strange that pops up on my skin. (I’m going to my doctor on Friday, actually, to get a spot checked out. Better safe than sorry.) I am diabetic because of the meds. The meds cause other side effects, too, which vary from person to person.

But if you stop taking these meds, BAD THINGS WILL HAPPEN.

And this isn’t just transplant meds. I lost my hearing because of ototoxic (toxic to the ear) medications pre-transplant. We needed strong IV antibiotics to keep me alive, and that has the effect of me losing my hearing and needing my cochlear implant. But, that’s what I chose. (Now, CF doctors are working to be more cognizant of this, yay! I like!) Chemotherapy is probably the best known treatment that causes a lot of side effects that are not, to put it mildly, great.

But these are the choices we make to stay alive.

I’m on many fewer meds than I was at the beginning. At the beginning of my transplant life, I was on four antibiotics daily—now it’s one. I was on at least 40 milligrams of steroids—now it’s 5.

All of this is a big part of why finding the best possible donor match is so imperative. The closer the match is, the lower your dose of suppression can be, because we don’t have to “hack” it as much. I am very lucky that I have a very good match.

So, that’s how transplants work! If you have any questions, drop them below and I’ll try to answer them as best I can! :)

Medicine, Accommodation, and Rudeness

“October Day”, Jean Charles Cazin, oil on canvas

This is sort of a hodgepodge of medical things that have been bouncing around in my brain, that I wanted to share with you. But it seems connected to me, somehow.

Thought 1: Needing Medication Isn’t A Bad Thing

Not everything, alas, can be fixed by diet, by getting more sleep, or by exercising, or praying more. Sometimes people need actual medical treatment, and that can include medication. This is not a failure, and this doesn’t make you a bad person. I feel like we especially feel like taking medication for a mental health condition is somehow shameful. It is not.

Connected to that is that medications have side effects. A lot of people treat this as a reason to avoid medications at all costs. However, that’s not feasible. At some point in your life, you’re going to need medication, whether it’s Tylenol for your headache or chemo for cancer.

Side effects are to be weighed by the overall good of the medication. For example: Prednisone has a ton of side effects. But it also keeps me alive. So, me staying alive outweighs the fact that it messes with my body’s ability to process glucose, that it causes weight gain, and etc. (However it also keeps my voice in great shape and my joints happy, so I feel like I’m winning here!)

Insulin can also cause side effects but without it, I will be in bad shape.

Everything has potential side effects, from water to the latest wonder drug.

Now sometimes, side effects make it not worth it to continue a medication. For instance, my body cannot tolerate statins, and when I took them, they didn’t impact my cholesterol anyway. So it wasn’t worth me taking the meds and dealing with the side effects for something that wasn’t doing its job!

So if you need medication, that’s OK. Be sure to talk to your doctor about the side effects, if you experience any, and if that makes taking the medicine intolerable.

But to say that medication shouldn’t be taken because it has side effects is…. silly. They’re something to consider obviously. But it’s not a blanket statement you can make.

You have to educate yourself and weigh the pros and cons.

Two: The Question of Accommodation

Recently there’s been a lot of talk about this due to the Fetterman interview (if you’re not familiar with it—Pennsylvania senate candidate John Fetterman (D) had a stroke earlier this year. In an interview with NBC news, he required captioning software so that he could understand the questions the journalist was asking, due to a sensory processing problem due to the stroke.) As such, there’s been a lot of commentary in the social media world about whether or not the reporter would’ve commented on his abilities (or disabilities) if, say, he’d been wearing glasses or been in a wheelchair—or if he was deaf.

Now, I have a little experience in this area. So I have thoughts—obviously.

First off, the only accommodation that most people seem to have no issue with is a person wearing glasses or contacts. It’s so common that everyone just accepts it as a thing and no one says anything. (However, that’s not true when it comes to things like large-print books, menus, signs, etc.)

This isn’t true for anything else. Hearing aids are often rejected because people don’t want to look “old” or like they’re impaired in any way. Only about one-third of people with hearing loss wear hearing aids. Insurance doesn’t cover hearing aids like it covers glasses, soething that I think is ridiculous (and is somewhat ameliorated by the fact that now you can get them over the counter). But hearing loss is also connected to dementia and Parkinson’s disease if it’s not corrected. There are lots of reasons to wear a hearing aid—but a lot of people don’t.

During COVID, a lot of us hearing impaired people were totally lost when communicating, because of masks. I still can’t go to a medical appointment and not wear a mask, which means I am often lost when it comes to what my doctor is saying! But there isn’t any accommodation. This extends to things like movies and TV, where not everything is captioned (or captioned correctly), to getting pushback when I make the argument for microphones and telecoil systems in church because it’s not…aesthetically pleasing.

Many public places aren’t accessible to a wheelchair uses, or someone who is on crutches or uses a walker or canes, because there’s no switch plate on the doors.

Accommodation is limited. How often do you see a braille menu, for example? How many places don’t have a telecoil system to allow hearing aid and cochlear implant users to understand things better?

But when these are asked for, they’re brushed off as “too expensive” or “impractical”.

So, the fact that Fetterman used captions for his interview isn’t really an issue. When I’ve done radio interviews I ask for the questions ahead of time so I can get an idea of what I’ll be asked. Most places will send me a list of questions that will be asked—sometimes more than we actually answer in the interview!

The issue here, in my opinion, is the difference between a physical disability and a cognitive disability. Wearing contacts and a cochlear implant don’t impede my cognitive functioning. My brain is just fine. Surely no one would say that Stephen Hawking was cognitively impaired! But there is a difference, and most people don’t get that (the same as not understanding that there are people in ICUs every day of the year).

The idea that people don’t make assumptions about people with disabilities isn’t true. I’ve had people talk to my parents instead of me when I’m in the room. When I had my new port put in, one of the nurses asked Dad something about me—I was “her” in this discussion—when she could have asked me, and if I didn’t understand her, Dad would’ve told me what she said. People talk around you but not to you. It happens all the time, to just about everyone who has something “wrong” with them that doesn’t involve wearing glasses.

Is Fetterman capable to serve in the Senate? I don’t know. That’s for the voters of Pennsylvania to decide. The answer might be clearer if updated, detailed medical records or statements were released. I do hope, however, that we can have some real conversations about disability, different kinds of disability, and accommodation, because we don’t have them as a society, and we need to.

But we also need to understand, as disabled people, that there are things we can’t do. I, for example, couldn’t do a job that included phone work. I’d be lost! I will never be able to climb Mt. Everest! That’s not “dissing” myself. It’s stating things that are true.

The discussion around disability is complex and fraught, but we need to have it.

Three: RUDENESS!

People, never comment on what someone is eating, OK?

There is a common misconception about diabetics that we can’t ever eat carbohydrates or sugar.

That is totally wrong. We can, nay, we must, at certain points, have carbs! If I didn’t give my body carbohydrates on a daily basis, it would get very angry with me. There are times when I must have them or I will faint, or go into a coma! Or DIE. (NOT KIDDING)

So there are times when we must have carbohydrates, be that juice, or candy, or cake, or pizza.

We can also have them just as a matter of course—we have to dose for it with insulin, like we do everything else. I eat ice cream and cake and cookies. I’m allowed to have them (like everyone else, in moderation!).

Sometimes my body decides we must have sugar right now, and that’s in church. It’s not great, but it happens. It does not break the Eucharistic fast. It isn’t disrespectful to the Lord. I have sugar packets, Skittles, and Sour Patch Kids in my purse for these occasions, as well as hard candies.

So if you see someone that you know is diabetic eating candy, or drinking juice, or having a brownie, don’t assume that she can’t have it, because she can.

Sometimes I have had to ask people to get me juice if I’m having a low and I’m still dropping, because I don’t trust my hands to not spill it. In that case, people get it for me, I drink the juice, and life continues.

But please don’t ask us if “we can have” a cookie or candy. We can. And we might need to have it immediately!

Thus endeth the medical lesson!

New port is in!

Hospital lobby at 6:45 AM :)

The port is dead, long live the port!

So last Thursday I had my old port—17 years, RIP!—taken out, and a new POWER PORT put in! (Power ports enable me to get things like contrast for CT scans through my port instead of trying to find a vein for that. They’re GOOD!)

This was a sort of complicated thing, because it involved both sides of my chest. I wasn’t sure where they’d put the new port, and the doctors decided to put it on my right side. So they had to take out the old port—which was buried pretty well, because I weighed ninety pounds when it was put in!—and then put in the new port on the right side, which apparently is the “preferred side” for port placement. Whatever!

This wasn’t done in an OR or under general anesthesia, like my first one was. This was “twilight sedation”, which is what I get for my bronchoscopies—you’re sedated, but you can still talk and respond to commands. I don’t remember anything from the actual procedure. They apparently had to give me more sedation than they thought, probably for two reasons: one, they had to go int through my neck to place the new port and I HATE having my neck messed with, and two, my face was covered by the surgical drape, and I don’t like that either. I was sort of freaking out about that when I fell asleep, so I’ not surprised my subconscious was still freaking out.

(It’s weird. I don’t mind masks and things on my face—like aerosol or oxygen masks. But if I’m flat on my back I hate it. I don’t know why. It’s a thing!)

Anyway, we were home by lunch time. The dressings are off, and now I have steri-strips, instead of stitches, that are still healing. This limits my ability to turn my head and how I move my upper body, which is a bit annoying, and of course impairs driving (can’t turn my head all the way to see things).

I’m not in a lot of pain which is nice. Sleeping is still sort of hard. But fortunately this week is entirely clear so I can just hang out at home and work on knitted Christmas gifts and read while things heal up.

So, I’m doing fine, glad to have my new port!

Therapy

(No, not that kind of therapy.)

So I had my seventeenth yearly post transplant checkup (well really 16th, since there wasn’t one when I first got my new lungs, haha). It went well. My numbers are rock solid and perfection. “Everything’s coming up roses!”

But.

(You knew there was a but.)

As you probably know, I do not like exercise. I missed out on the genetic lottery in this sense—my brother runs marathons (Boston, New York, etc.) and coaches cross country. My sister played high school and college tennis, runs, and her husband (who is not connected to me genetically, obviously, but still) runs marathons as well, and my sister in law was a gymnast, and also runs. I am surrounded by super fit people who like to work out and are good at doing things with their bodies.

I am….not.

Now, over the this year, I’ve been working at getting better at working out because I know I need to be in better shape. At my clinic visit, my transplant coordinator said I absolutely have to be working out 5 times a week for 30 minutes. Must. Have to. Non-negotiable.

Then she said the magic thing. “Just think of it as doing your CF therapies.”

CF therapies—or “therapy” as we called it in our house—consist of nebulizer treatments and doing the vest or other postural drainage techniques (PT) to get the sticky mucus out of the lungs. This took, at minimum, 30-45 minutes, twice a day. In the evening it took longer because I did another nebulizer med, and if I was doing inhaled antibiotics, it could easily take 90 minutes to two hours. This was twice, or three times, a day. Every day.

I had never thought about exercise as being a “replacement” for daily therapy. Because honestly, therapy wasn’t fun. I mean it could be—I could watch movies and things while it was on—but I couldn’t really do homework because if I looked down the nebulizer could drip on my work or the textbook; I couldn’t read because of the vest vibrations (shaking books!). I could do some work on a computer though, and I did that more often in the early 2000s (pre-transplant). But it was a pain.

Exercise is once a day, for thirty minutes, which is way less daily time than the therapies took. It’s one and done. I don’t have to like it, but I do have to do it, the same way I did therapy.

For some reason I had never made this connection. But once it was made, it….made sense.

So I am almost a week into this and it’s been….not bad. I’m using the Peloton app, because it adds music and fun instructors, and it’s captioned (hallelujah!), and it tracks my heart rate on the screen so I don’t have to be looking at my watch all the time. (I do not have a Peloton machine. I use the machines in the complex gym—there’s no bike there, so it’s all treadmill stuff.)

Right now because I’m starting with 20 minutes on the treadmill, five times a week.

I don’t have to like it, but I do have to do it. Because I want to be here for Patty and Maddie and new baby DeArdo. That’s worth it to me. (And hello, there are Broadway themed walks, sign me up.)

So, here we go.

Everybody Hurts

(And yes, I did choose that title based off the song.)

One of the things I’ve come across a lot in 40 years is the idea that if you are financially well-off/secure, that you don’t suffer. It’s gotten to the point where I feel like I need to write about it here, to disabuse folks of this notion.

It’s usually not put that baldly, but that’s the gist of a lot of things I hear. Like, “Oh, a homily on suffering at a wealthy parish? They don’t need it!” Or “Well you’re financially secure, you don’t know what suffering is like!”

That’s…just not true.

Let’s start with the obvious and quote Scarlett O’Hara: “Money does help.” Yes, it does help. When my family was dealing with me being in the ICU, we weren’t worried about how we were going to put gas in our cars or keep the electricity on. True statement. Money helps.

However—my parents had a child in the ICU. A child they were being told was going to die. They had two other children to take care of at the same time, and potentially prepare them for the death of their sibling, while they were dealing with the possible death of their daughter, and maybe thinking they were going to have to plan a funeral. And at the same time, they were also dealing with my siblings’ schoolwork and teachers and all that jazz.

Yes, money was helpful—but they were suffering.

Life doesn’t look at your W2 or your 401(k) and go, “you know what, I think I’ll leave you alone because you have a good bank account.”

There are lots of different types of suffering, and financial poverty isn’t the only kind. There’s emotional suffering, physical suffering, combinations of all these things! Saying that being wealthy/well-off/ middle class negates any possibility of suffering “just ain’t so”.

This also goes with the whole, “Oh you’re thin I’m so jealous” thing.

Diane and me, May 2005

Folks. Look at that photograph. This was taken about a month and a half before transplant. I felt awful in this photograph. We’re at my grandfather’s surprise 80th birthday party, which I went to because it was his 80th birthday, even though my body was like PLEASE LAY ME DOWN AND LET ME SLEEP.

I weigh maybe 90 pounds here. The week after this party, I went into the hospital for almost a month. The sweater I’m wearing is an XS and it’s still hanging off me (look at the sleeves). Diane has a healthy paleness about her. I look sick. I was not healthy. In the hospital I was fed TPN (nutrition through an IV line) and lipids (fat!) to get me to gain any weight. This is NOT HEALTHY IN BIG CAPITAL LETTERS. This is a person near death.

And yet I had people telling me that I looked so thin! And making comments about how they had hips, and I didn’t, in a way to make themselves feel better about their bodies! (Seriously, they did this.)

I WAS DYING.

And people were looking at me, being jealous of my thinness.

That’s a problem, folks.

So please don’t think that because someone is financial secure/thin/good looking/happy, her life is just all sunshine and roses and awesomeness.

Everybody hurts.

Deo Gratias!

On the Solemnity of the Sacred Heart of Jesus, it is so appropriate that one of the worst SCOTUS decisions in history is overturned, joining Dred Scot and Plessy on the ash heap of history.

Every since I was old enough to know what abortion was, I—and so many others—have prayed and worked for today. This is a victory for the pro-life movement, and I don’t think it’s a bad thing at all to take today and celebrate and give thanks for this.

I am happy on a more personal level as well. If you’ve read my book, you know that I have often had people tell me that people with genetic diseases are not “worthy” of living, because our lives are too hard or we suffer.

Ninety-six percent of babies who are discovered to have CF in utero are aborted.

Today, that number will begin to decrease, and more people like me will have a chance at life.

It’s important to note that Dobbs doesn’t make abortion illegal in the United States. Instead, it throws the matter back to the states (which is where it should have been all the time.). Every state can determine their own abortion laws.

This is not the end of the pro-life movement. In the words of Winston Churchill, “It is the end of the beginning.”

We know that there is work to do to change perceptions. We know that more pro-family legislation is needed, and we need to continue to support the work of maternity/crisis pregnancy homes, pro-life charities, and other supportive networks.

If you want to contact your state legislators about this, be sure to do it politely (always, please, especially if you’re calling them).Let them know that you support legislation that helps the vulnerable. See what your state already has and then work to support it, financially, materially, or with your time. I’ll be compiling a list of resources later, but you can always start with the Sisters of Life, who do such great work in the US and Canada.

And let’s stop talking about how children are barriers to our lives, OK? Let’s stop talking about how women have “fewer rights” then men. Women, it’s time for us to stop believing the lies that the sexual revolution taught us. Sex is not free. Having sex with multiple partners is not liberating. Let’s reject this mindset for the lie it is. Let’s teach our daughters that. Let’s not continue to perpetuate a lie—which is really a malicious, twisted lie—that sexual freedom is a good thing, that we are “entitled” to do whatever we want, when we want it. That’s a perversion of our freedom.

There are certainly times when women find themselves in situations that they didn’t expect. The pro-life movement is there for them. We need to champion life in all its stages, and Dobbs gives us the framework to start doing that legislatively—but it also gives us the freedom to start doing more outside of the statehouses, to step up our advocacy and demonstrate that it’s truth that sets us free.

Women deserve better than abortion. Children deserve better than abortion. We all deserve better than a culture that takes innocent lives and treats them like garbage, and cloaks its satanic mission in words like “care” or “health decisions” or “choice”.

Today is a victory for life.

Let’s celebrate it, and then continue our work.

(NOTE: normally, I let the combox be totally open. But I will delete any comments that have bad language on this post, OK? I would do that anyway, but….just a reminder.)

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

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

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

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

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

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

Second is my insulin and other diabetes things.

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

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

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

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

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

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

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

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

Why the Best Narnia Book is Voyage of the Dawn Treader

It’s mostly because of Reepicheep.

Why is a talking mouse so important? You can read my essay over at Mere Orthodoxy:

Clearly, Voyage of the Dawn Treader is the best of the Narnia novels, and a big part of that is due to a talking mouse.

Yes. I’m talking about Reepicheep, the brave, swashbuckling Narnian mouse who is on a quest to find Aslan’s country (and defend the honor of the Kings and Queens of Narnia while he’s at it.).

Sure, a lot of things happen in Voyage that also give it the claim to being the best novel, the discussion of science and modernism versus tradition and religion (although religion and science aren’t actually at loggerheads), Eustace’s Pauline conversion, the growth of Lucy, Edmund, and Caspian, and of course the quest to find the seven lost Narnian lords, which gives the entire book its shape. All of these things add up to a tightly plotted and fast moving adventure. But I think that the reason it’s the best isn’t just Reepicheep, but what he and the other characters go through in the novel, which is growing up and becoming adult Christians.

In Voyage, the things that stop our heroes and heroines are themselves, which is true in our own lives. 

Read the rest here.

Forty

I’m forty.

I wasn’t supposed to be forty. This was a birthday I was never supposed to see.

When I was diagnosed with CF, the average life expectancy was mid-thirties. Then I almost died at nineteen.

If my organ donor, Suzanne, hadn’t made the decision to donate her organs, I’d have died at twenty-three.

But she did. And seventeen years later, I’m forty.

FORTY.

Unlike a lot of people, I don’t dread my birthdays. I celebrate them with full vigor, and this one, especially, was celebrated to the hilt.

My door was decorated by my brother Bryan and my sister-in-law, Sarah.

They also sent me a truly stupendous bouquet of flowers.

That night, my parents hosted a party for me at a local restaurant. We had a private room!

I did the name cards!

(Sarris chocolate is my favorite chocolate in life. It’s a Pittsburgh-based chocolate company and I’ve been eating it since I’ve been old enough to have teeth. My grandma used to have little bowls of their foil wrapped Easter egg chocolates in her house and I loved to eat them. So I thought they’d be a sweet treat for our guests!)

Some of my favorite people were there…..

Amilia came all the way from Illinois for the party!

Tiffany and Bill were there! (Alice was with her grandparents.)

Mary was there!

If you’re read Living Memento Mori, then you know about Rita, one of my favorite nurses—she was at the party!

And my brother and SIL were there too!

It was a fabulous party—it went on for four hours, which didn’t seem quite possible.

It was, simply, way too much fun.

Suzanne made all of this possible. She makes my writing this possible.

If you’re not an organ donor, please consider it. You can sign up online here.

Being a "disabled writer"

violets in my yard

The other day on IG I saw someone asking if there were more Catholics who spoke about disability issues or accounts that focused on disability and faith.

Now, this, in and of itself, is not a bad thing but it got me thinking, which got me writing.

I am “disabled”. I put that word in quotes because I don’t really think of myself as disabled apart from my hearing loss. This is something that I’ve noticed, that the range of disability—and who considers themselves disabled—is wide.

And that’s the same as my interests. Like Elizabeth Bennet, “I take pleasure in many things.” I don’t just write about disability and faith, or just disability, or just faith! Taking a quick scan of my blog posts and IG feed, you’ll see babies (ok, lots of babies), knitting, flowers, food, paintings, books, games….all sorts of things. I’m interested in a lot of things, and that’s what I write about. Obviously I am also interested in writing about health because my health is a big part of my life. I do advocate for accommodation. (Here are all my posts with the disability tag)

But I’m never going to start a conversation with “Hi, I’m disabled.” I don’t start by telling people I have CF or I had a transplant or I’m hearing impaired. The latter does tend to come up earlier than usual when I talk to people because, well, it’s sort of urgent if I can’t understand you.

Everyone handles disability or illness in a different way, but don’t expect us to just talk about those things. Some people do—that’s what they feel called to do. But if I just wrote about my disabilities I’d be bored stiff and so would you! I’d run out of things to talk about!

I like to talk about knitting and Maddie and Patty and travel and cooking and TV shows and movies (and speaking of hearing impaired-ness and movies, go CODA!). Don’t just see the disability. See the person behind it.

And also, at the same time, don’t think that we’re exceptionally “brave” or “strong” people because we live with a disability. Seriously. I’m not a saint (ask anyone who knows me, not a saint definitely not). We’re people doing the best we can with the life we have. That’s all.

Snow Days

(This project is done! I can’t wait to show you in February’s Yarn Along!)

My general thought on snow is that if I don’t have to go anywhere, it’s fine. I really hate scraping off my car and all the extra time that snow entails when traveling, especially if it’s before the sun has come up. But since I work from home now I generally like it a lot more than I did!

I especially like the sense of quiet and coziness that snow brings. I feel like I can knit, read, putter….and that’s all productive, instead of feeling like I should be out in the world, doing other things!

But when I do go out in the world, there are babies to be snuggled!

Alice and I, becoming friends!

I mean really, is there anything better in the world than holding a baby for hours? There are parts of my chest that just seem made for a little baby head to nestle in—and they probably were! :)

Truly, this is divinity. I am very glad that Tiffany, Alice’s mom, allows me to be so adoring over her child. :)

So while I do have to go out into freezing cold-ness tomorrow for labs and PFTs, it’s nice to come back to a warm hobbit hole!

In Which Emily is Completely Honest: A Hospital Tale

The results of said Hospital Tale

At almost forty, and with 39 1/2 years of medical intervention under my belt, there is very little that I have not yet done in hospitals.

Procedures don’t really surprise me. What surprises me—and dismays me—is crappy staff.

As you all know, most of my medical experiences have been in a pediatric setting (yes, even when I was in my late 30s). In peds, there are many things that should be passed on to adult hospitals when it comes to how you treat medically complex patients. And, indeed, one of my big worries about moving to New Resort was that they wouldn’t know how to treat me.

This has been born out in a lot of ways, but especially in Today’s Tale!

Settle in.

*

On the first Tuesday of the year, I had a colonoscopy. Not the best way to start the year. And yes, I’m not even 40, let alone 50, so why, you may ask, was I having one? Because people with CF are at a higher risk for colon cancer, so we start our screenings earlier.

Now, I have determined (this is in no way scientific, just based on anecdotal evidence) that there are two main types of CF: The CF I had, which is where everything else works and your lungs are CRAP (to put it nicely) or, your lungs are OKish, and everything else is CRAP—mainly your digestive system. This is where the colon cancer it comes in. I have the first type of CF—once I got new lungs, my CF was pretty much….resolved, in the sense that the rest of my body works pretty darn well. Yes, I still have CF, and will until I die, but I’m not doing chest PT every day, I’m not taking albuterol and pulmozyme, and I do not take any CF specific meds. My diabetes is called CF related diabetes, but it really isn't. That’s just the easiest thing to say, instead of “post-transplant steroids + menopause related diabetes”.

Anyway, all this to say, I don’t really need a colonoscopy. But I had one because I’m a good girl.

So the prep was better this time—I only vomited once!—and we got the desired results on that end.

But then I had to deal with….staff.

*

Ask just about any nurse who has had me and they will tell you I am a good patient. I am polite. I don’t hit them (important in peds!). I don’t call them names, I don’t swear at them, I don’t blame them for things that are not their fault.

However.

We had been told to go to Main Campus to get my colonoscopy because they could access my port.

Hahahahah. They didn’t.

You’re probably saying, Emily just shut up and tell the story.

OK.

So I get there. I go back. One nurse is hunting for an IV spot and one is trying to check me in—running through my meds and such. This is all done with masks on, and the door is open, so there’s a lot of noise because this is a “factory” setting endoscopy unit—move people in, move people out. As in, they don’t know your history, they don’t really care about your history, they just want to cycle you through.

I have a hard time understanding the nurses, so I tell them this.

The first nurse looks at my port and I said, “but if you don’t want to try it, we can put in a peripheral, I have good veins in my right shoulder.”

She doesn’t use those veins. She hunts. She fails.

Now, the first thing is that she’s using a not tiny needle. You must use tiny needles on my veins because my veins are shit.

They call in the anesthesiologist. He doesn’t want to do the ones in my shoulder. (Now, why he was being asked, I have no idea. But he was!)

So after this nurse says, “Well, we can do ultrasound guided IV. I know you don’t like them….” (I had mentioned this.)

I HATE ultrasound guided IV. Here’s why: Instead of going for a surface vein, you’re going into the arm.

INTO. Under the skin, INTO THE ARM.

Think about that for a second. NOT FUN.

Nurse doesn’t want to try my port. I’m…..not sure why.

So I submit.

To six of these.

Anyway throughout all these tries, I am not happy. I am further lead into unhappiness by the following comments:

“Has anyone ever told you you have thick skin?” (I do, but not the way she means, and I don’t)

“Why are you crying?” (BECAUSE IT HURTS YOU IDIOT).

And my favorite, “Are you afraid of needles?”

This is where Emily Honesty came out. “No. And if I ever was, I would’ve had to have gotten over by the time I was five.” Because, you see, I was getting monthly blood draws for my anti-seizure meds when I was a wee bairn. I didn’t mention that I stick myself eight times a day for insulin, so if I was afraid of needles my life would be insanely difficult.

Mr. Anesthesiologist comes in again.

“Well we’ll just have to put one in your neck.”

via GIPHY

I have had an IV in my neck, when I was 19 and we needed it there to save my freaking life. Other than that, NO.

So I said that. “No. Absolutely not.”

“Well then you can’t get the procedure.”

“I don’t care. You are not using my neck.”

He shrugs and leaves.

So then we have two more tries, from “good people.”

The first one blamed me for moving during the IV try. Then she looks at my port. “Have they tried that"?”

“Once.”

“I can try it.”

“OK sure. I need a 1.5 inch needle.”

“Oh, we only have a one inch.”

via GIPHY

Dad and I drove down to Main Campus because they could access my port and now you’re telling me that in one of the top medical centers in the nation you don’t have a bigger needle?!

No, dear reader. They had a bigger needle. She didn’t want to get one. Let’s be real here. Hem/Onc (hematology/oncology) has bigger needles. I know they do. We use them all the time when I get labs drawn here from my port.

But this woman didn’t want to go find one.

In peds, she would have, or someone would have, if she was a particularly nasty nurse and didn’t want to go get one. I know this, because it happened a lot. If we didn’t have a needle, or we needed help with my port, one of my nurses would call up to hem/onc, who would come over, and then do their thing.

But no, we can’t do that. Why care about patients? Why try to make things easier for everyone?

I left her try with the one inch, no idea why—she didn’t get it, of course, and I said, “well I knew it wouldn’t work.”

The last dude comes in. He gets it, finally. Led to that bruise which topped the post.

I get the colonoscopy. The results are fine.

But I am not having another one.

*

Here’s why.

I only have so much vein “real estate” at this point. I’m probably going to need a new port, because the hospital nurses are not trained in accessing the one I have, although the ones at the lab can do it. (This is shitty training, if you ask me.) You are not using my neck. And I don’t want to give up good veins or things that are not really, truly important. For example, a CT scan with contrast can be important. A colonoscopy? Nope. (Yes. I know. Colon cancer. Etc. etc.)

Two, I’m tired of breaking in new people. I’m tired of explaining to them why I have a port, why I’m getting a test done. I’m tired of them messing around with my body and being generally incompetent. I’m tired of having to deal with this, quite frankly.

This is where peds is so much better. In peds, they understand that you might be complicated. Here, they expect everyone to be easy when they’re my age and are shocked when they’re not. They don’t know how to handle a patient like me. And I don’t want to be their guinea pig anymore. Instead of trying to understand me, they get frustrated because I’m not an easy patient. Well gee, I’m sorry.

I also don’t want to put up with stupid questions (SEE ABOVE!) anymore. I just don’t have it in me.

One of the things the nurses kept saying to me was , “Well, you know, if you don’t want to do this we don’t have to.”

I finally said, “Half of my life is doing things I don’t want to do, this is no different.”

And that’s probably an overestimate, but it’s true. “What I want to do” isn’t even in the decision making graph for me. It’s what do I have to do. I didn’t want to be doing this at all but I knew if I didn’t, I’d get reamed out by my doctor. (I’m going to have a talk with him when I see him in June, just about how I’m not really doing this anymore.) “Want to” doesn’t factor into it, lady.

I am proud of myself for standing my ground on the neck thing. That’s my line and we’re not going over it.

I am, however, really frustrated at how this hospital treats medically complex patients like me.

Dangerous Crap

Internet stupidity makes Patty UPSET!

So today I read an article written by a priest that says that if you’re not healed of your suffering, you are….basically not doing Christianity well enough.

Ohhhhhhhhh I began to wail like an over-tired Patty when I read this.

I am linking to it, even though I don’t really want to give this article hits, because…..yeah.

Now, in fairness, I will note that the author says “possible reasons” at the beginning of his piece.

However it doesn’t cover the amount of sheer insanity that is spouted.

Here’s why you aren’t getting cured:

*You lack consistent prayer

*You lack faithful discipleship

*You lack complete trust

*You lack readiness to give total praise to God

*You lack the willingness to bring healing to all persons.

Do you notice a thread here? It’s all, you are not doing your part so you need to do more and then God, like. vending machine, will give you what you want. You need to do better.

At the end of the article the author says that well, God has his own reasons for doing or not doing things.

But look: This is dangerous garbage. To tell someone who is desperate for healing that they aren’t praying enough, aren’t trusting enough, aren’t doing enough—that’s crap! It’s like the people who have told me that the reason I have CF is because I haven’t prayed enough. It smacks of the attitude of “Oh, there, there, just do X and all will be FINE!”

What? No.

What, precisely, did Jesus “do” to “earn” his death? Did he not have total trust in God? Did Mary lack faith and prayer, or the willingness to give total praise to God, as she watched her son die?

Jesus says in the Gospel of John that the blind man is blind because that’s how he’ll glorify God.

In my book I write about this dangerous attitude. And I also write about how God uses suffering to draw us closer to him, deeper into prayer, and further into a relationship of trust.

Prayer is not magic. God isn’t a vending machine.

If you are suffering, do not believe that somehow, you are failing. Yes, through your suffering, God might be asking you to do more—to trust him, to enter into deeper prayer. But to enter into that with the goal of only gaining is not the right way to enter into deeper prayer. A real relationship with anyone isn’t about what the other person can give you or what you get.

Suffering can, certainly, be, as C.S. Lewis said, “God’s megaphone to rouse a deaf world.” It can spark conversion, definitely.

But we need to be very careful when we talk about why God is permitting suffering. We need to step away from thinking that if we’d only do X Y Z that we’d be cured.

God’s ways are not our ways, and suffering is a deep mystery that we will never totally understand. Don’t try to provide facile answers.

A Thrill of Hope

I’m featured over at Spoken Women, writing about today’s second reading from St. Paul!

Excerpt:

This Sunday, with almost two weeks left before Christmas, St. Paul tells us to “rejoice always!”

Do you feel like you rejoice always? Or rejoice at all? Do you have joy in your daily life? 

I’m going to make a confession here: I am a very naturally happy, nay, joyfulperson. In fact, when I was a contestant on Jeopardy!, a Twitter user wondered if I was trying to imitate Carol Channing with my enthusiasm. (If you don’t get that reference, google Carol Channing. You’ll get it.) 

I wasn’t. I’m just a naturally joyful person. So when St. Paul says to “rejoice always”, I can say I do that often enough. Not always, though, because, let’s be honest: It’s hard to rejoice always. 

Read the rest there.

Margin

Are you a person who needs permission to relax?

I am one of those people. Not to relax, per se, but to build in margin? To give yourself a break? That’s a problem I’ve always had. In some ways it’s good, because I can be counted on—I once did a performance of The Importance of Being Earnest in the midst of atrial fibrillation, because there wasn’t an understudy. I finished the show, went home, changed, and then went to the ER to get it fixed. (Seriously)

Sometimes it’s good that I don’t want to let people down. Other times, it’s not good.

But I think it’s especially important now, when everything is so busy, to remember that it’s OK to give ourselves margin.

For example: Before I had sinus surgery, I told the lector coordinator that I’d need two weeks off. I didn’t think I actually would be sick for two weeks but I thought, eh, you never know.

It turns out that yeah, I have needed that margin. This morning I thought I wasn’t going to make it to Mass. I didn’t fall asleep until almost 4 AM. But as the day went on (and as I’m writing this), I felt better. So I decided, yes, I could go. I had enough margin. I love Advent, so I knew it would feel good to go to Mass and I could wear one of my new dresses!

Said dress! :)

But, if I hadn’t felt good, then it would’ve been OK to miss Mass.

As I look back on my life, I see that there are times when I probably should have had margin, and didn’t. Like the high school semester that I had TB? I only missed four days of school, and two of those were for testing at the hospital. I should’ve missed a lot more. I was falling asleep in my Earth Science class! There was one day when my mom woke me up, and I was so tired I was crying. That day, I didn’t go to school; I just slept all day. We probably should have done that more. I should’ve said “I need this” more. But I didn’t.

The summer after I almost died? (TWENTY YEARS AGO, now!). I got a summer job. Probably shouldn’t have done that.

Post-transplant I knew that margin had to come into my life in a big way. I couldn’t push myself like I had before. I really did have to listen to my body. And I’ve done a better job of that, over the past 16 1/2 years. But it’s an ongoing process. I need to learn to cut myself some slack, because I can be hard on myself, and I’m guessing you can too.

It really is OK to step back. The world will not end if you take time off. It really, really won’t.

My tree isn’t decorated yet. My nativity isn’t up yet. Normally, both those things would be done. But they’re not. And I’m not pushing myself to do it, either. I’m letting myself feel out each day and see what’s happening in my body. I’m feeling, right now, like the nativity will happen tomorrow. But I don’t know for sure and that’s OK.

It is OK to need margin and space. It is OK to rest.

If you need permission, you have my permission.

REST. Give yourself slack. Create margin. It’s OK.

Life Lesson: Get In The Picture

The other day, I was going through my photo stash on my computer. I’m sure I’m not the only one who suddenly realizes, I have thousands of photos on my phone, I should do something about that, and then goes on a deleting/organizing spree.

As I as going through them I found a lot of older photos of me, obviously. Photos that, at the time, I had hated. Take the photo above. I didn’t like the way I looked in that photo when it was actually taken. This has been a pretty constant thing for me, in all the years post-transplant. I rarely like how I look in photos.

This is because, pre-transplant, I was tiny. My body was actually eating itself to stay alive. I was actively dying in some photos. But damn I looked good in photos. Girls told me that they wanted to be me. I was a size 0 (00 didn’t exist then). I had a skirt from Gap that was an XXXS. That’s right. A triple small.

I weighed around 103 lbs in college. Before transplant, I weighed 85 pounds. I was the size of a middle schooler.

But I looked good in photographs.

Now, going back, I can see that I didn’t. I didn’t have good color, for one. I’ve always been fair, and I still am, but this was sick fair. Consumptive fair, Lucy-being-drained-of-blood-by-Dracula fair.

This is me in college—when I was healthier, when I weighed about 103 pounds or so.

It’s not a great picture, but you get the idea.

But our culture—and really, it is our culture—is so screwed up that we think that a girl who wears a 00 and is dying is something to be emulated, that this is a “good look”, that this is a good thing.

It is not a good thing. I’m sure some people thought I was anorexic and that I did this on purpose. I didn’t.

CF, for girls, can make you look really “pretty”. You’re thin, for one, so that helps. People think you look good. But it hides the fact that ours bodies are cannibalizing ourselves to stay alive. A CF person needs about 5-6,000 calories a day. I wasn’t getting that. Even on TPN (total parietal nutrition—essentially tube feedings, via an IV that was hooked up while I slept), I wasn’t gaining weight.

But I didn’t mind having my picture taken.

Post-transplant, I mind. I mind a lot. There were maybe a few months where I felt OK about having my photo taken, but generally, over the past 16 years, I try to hide in photos. I don’t like seeing myself in photos.

I’m much healthier now, obviously. I’m not on the brink of death, and that’s not an exaggeration. I have muscles, my body doesn’t try to eat itself to give itself fuel. But there are lots of other issues—not the least is trying to re-learn how to eat after 23 years of “eat whatever you want”—and with diabetes, the fact that you can have to eat things like candy, or drink juice, just to keep your blood glucose happy, is a lot of balls to juggle.

I try not to complain about it. But it’s hard to see myself in photos.

But anyway, as I looked at the photo of Di and Frankie and I (above), I thought. I am glad I got in that picture. I am glad that I have this memory of that moment, of Frankie being that age and Di and I enjoying being together. I am glad that I am in this photo.

Over the weekend, Diane texted me and said that Bridget had found a photo of us, taken when I was on vacation, on her mom’s phone, and that it was “her favorite.”

And I realized, Bridget doesn’t care that I don’t like how I look. What she cares about is that I was in a photo with her. That we have this memory.

This doesn’t mean that I don’t want to be stronger, that I don’t want to be in better shape. (I finished a workout right before I wrote this.) I do.

But so many times we don’t want to be in the picture until we “look better.”

But the important thing is that we make the memories. Because that’s what matters. That we have these things to look at later, and that people have these when we’re not there.

Get in the picture, folks.

Seven Quick Takes--Sinuses & Stats

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Hey everyone! Welcome to fall. (AKA, the return of hockey season!)

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On the blog this past week, I wrote a piece that I think is pretty important, and if you haven’t read it, here it is: Lies, Damn Lies, and Statistics.

If you’ve been a reader here for any length of time, you know that I take the idea that “everyone has worth” seriously. This is because I have been frequently told that because my genetic code is messed up, my life is “too hard”.

Life is hard for everyone. Everyone will suffer. Everyone will die. I wrote a book about this, for Pete’s sake.

Yet some people think we can control suffering. We can control unhappiness.

We can’t.

So whenever the ugly head of eugenics rears its face, I try to play whack-a-mole with it and beat it down into the dust where it belongs. This piece is my latest Whack-A-Mole entry, but with the caveat of a really, really grim statistics at the beginning.

95% of children with CF are aborted in utero.

Anyway, read the piece to get all the sad facts and see exactly how I feel about this. :)

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Happy news, yes? :) How about some Patty?

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Also in HUGE news, I’m an auntie to a little girl! I have a niece coming! Her name is Madeleine Grace and she will arrive in the world in January and I am so excitedddd. (She is my sister and her husband’s little girl)

This is the first grandchild for my parents, so obviously we are all really excited.

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I’m having sinus surgery in December! My ENT had a CT of my sinuses taken and apparently there is lots of “mucus and junk” hanging out in my ethmoid sinuses (which are really cool, btw), so he’s going to go in, get the crap out, and then flush in lots of antibiotic stuff to keep things happy!

This is all part of CF. The mucus that’s really think and causes so many issues in my lungs also causes issues in other places, mostly the sinuses, the pancreas, and the reproductive tract (most men with CF are sterile—not sure if it’s all, but most are.) For me, my transplant took care of about 98% of my CF issues—but not my sinuses. Fortunately I have really good sinuses (I had a friend who needed sinus surgery every nine months) but it’s been about 10 years since I had a clean out and that means I’m overdue. So, December! Surgery! Yay!

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Dad and I are reading the Cormorant Strike series and we love them. I just started watching the TV series. Have you read these? I’m not super into mysteries/crime, but I love these. And I mean it helps that they’re ghost written—it’s actually JK Rowling who write them. :) So as a massive Harry fan, that helps. (I didn’t like her first adult novel, btw. So that’s why I was slow to pick these up. But these are good.)

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Knitting? I finished the Beatrice Shawl, and I’ve got four colors for a mystery KAL.

Beatrice shawl on the mats

The KAL is a 6 week thing, and I have five of the clues so far, so I joined late, but I’m really chomping at the bit to get started. I just needed some more size 4 needles, so once those arrive I can dive in!