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!

Jinx

Man I hate it when I jinx myself…

So I write a post about how to live Lent when life is Lent-y, and I think, oh this hasn’t happened for awhile…

AND THEN IT HAPPENS.

Sigh. I bring these things upon myself!

Well, not really. It has been a very long time since I’ve had any sort of pulmonary infection issues so I was probably due, to be honest. But I’m doing a course of oral antibiotics and it’s working beautifully, so I feel much better. I’m still dealing with some lingering chest pain, but I know that will get better as the rest of my body heals. I have a week to go on the antibiotics and I’m being very intentional right now in giving my body what it wants (liquids, rest, stretches!) and adding back my Peloton workouts when it feels right to do it. I’m hoping to jump back in with yoga this week (short classes!) to help get some mobility back to my lower right chest, because that’s where the pain was, and I need to start opening that area back up with some good (gentle!) stretches.

I’ve also learned that I can have a lung infection and my blood glucose will be fine. That’s weird, but oh well, t least I know now. The more I learn about blood glucose the more I realize it really is a crazy thing!

So the reason it’s been quiet around here is because of all of the above. I’m very glad to be on the upswing!

Currently on the needles: a long shawl with an interesting construction, which is being knit up in silk! I’ve never knit with silk before and I’m really enjoying it.

Blogmas '22 Day 5: How to Pack Your Meds When You Fly!

From my trip to Houston this summer

I’ve been reading the coverage of the Southwest Fiasco, and what’s really scared me more than anything else is the comments from many people about PUTTING MEDICATION IN CHECKED BAGGAGE.

via GIPHY

PEOPLE.

Never, ever, ever put your medications and medical devices in your checked baggage! EVER!

I always put my meds in my carry-on, which is an LL Bean backpack. Always. They are in a large zip-up pouch. I also take extra medicine, just for purposes like this fiasco, where you’re stuck somewhere—the last thing I want to worry about is my medication and my health. So I also pack the entire bottle of medication, in the pharmacy bottle, so if I have to take it somewhere to get refilled, I can do that and it will have all the information a new pharmacy would need to fill it.

(Some people say, “well, just have your doctor call it in to the new pharmacy!” Over the holidays, it might be hard to get your doctor’s office on the phone!)

My insulin, insulin supplies, blood glucose kit, and my cochlear implant batteries and charger also go in my carry-on, always.

Does this take up space in my bag? Yes. Does it mean I can’t fly with just carry-ons? Also yes. I must check a bag.

But it’s much easier to check a bag than it is to lose medications, get them replaced, and, oh, worry about my body going into meltdown while I’m stuck somewhere!

I didn’t fly a lot pre-transplant, mostly because it was hard to do with my CF related machinery (aerosol machine, nebulizer, etc.) , but I have a travel size aerosol machine that I used when I did fly or travel, and it could fit in a backpack and wasn’t terribly heavy. I could also fit the supplies in my bag. So if I had to carry those around now, I could do it (They have much smaller ones now than they did in the year 1999!)

Folks. I beg you. Never, ever, EVER put your medications and medical supplies in your checked bags. Never in life. Do not do it. Pay to check the bag. NEVER EVER put your medicines in a place where you can’t get them.

Transplant Myth Busting #1: Only Rich People Get Transplants

Fall near my transplant center

Social media can be a den of vipers, as the Bible says.

But it can also be a great place to correct myths, evangelize, and truth-tell.

Last night, a friend of mine on Twitter directed my attention to a thread (by a doctor, no less, sigh) talking about how only the “wealthy” get transplants. She (my friend) was wondering if this was actually true.

It is not, and I did a short thread dealing with the issues she talked about, but I thought it deserved longer (and slightly more permanent) treatment, so, here we go! Time to myth bust.

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Transplants are expensive. It’s true. It’s not just the cost of the surgery, the hospitalization, and the rehab, it’s also the cost of the medications that one must take in perpetuity. That’s why, when you’re first being worked up for possible transplant listing, an insurance check is run. What that means is that your policy is looked at and its coverage limits, etc. are determined. Back in the day when I got mine, my policies (they were different as I went through the process) had a cap of a few million. (Yes, a few million.) That covered the surgery, the hospital stay, the rehab, meds, and also some of the relocation costs, because a lot of people have to relocate to their center for a few months if they don’t live nearby. I did not have to do that, a thing for which I am eternally grateful. So no, I didn’t use all of the cap for my surgery and recovery. But it was there.

The medications are key to transplant success. If you don’t have them, you will die. Ciao, adios, kaput, end of story, Elvis has left the building. You get the idea. So you either must have insurance coverage for them, or you have to be eligible for the low-cost co pay cards that drug companies offer.

The hospital doesn’t run this step just to say, “well, sucker, you don’t have good insurance? TOUGH LUCK!” They do it to get an idea of what you have, but also to get you help if you need it.

Medicare covers transplants, as does Medicaid. So the idea that “only rich people” get transplants isn’t true on its face.

But yes, the hospital has to know that the patient can access their medications, otherwise the transplant isn’t going to work. Before I was discharged after my transplant, the transplant pharmacist had my parents bring in all the medications we’d gotten from our local pharmacy so she could double check that everything was correct. It’s imperative.

But even if we stripped away all the monetary things—let’s say we had the magical Medicare for All that some parts of the left talk about—that doesn’t mean that everyone would get listed. Why?

I’ll tell you.

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To be a good candidate for transplant, you have to check a lot of boxes. You have to be sick enough to need the surgery, but strong enough to survive it. You have to be cognitively capable of understanding when to take all the medications, what symptoms to report, how to take the medications, and why you need to take them. You have to have at least one caretaker during the initial process, because you won’t be able to do things on your own for a bit. (I couldn't drive for three months post-transplant.) You have to have appropriate housing (ie, nothing from Hoarders). You have to have reliable transportation so you can get to and from appointments and tests.

And you have to have a record of giving a crap about yourself.

I’ve told this story many times, but it’s worth rehashing here. At my last CF clinic appointment before transplant, I was sitting in the waiting room next to a girl about my age (early 20s). She had a baby with her. She told me she had two other children and she lived with her mother. She was on IV antibiotics, but she was sort of haphazardly doing them. And then she told me that she knew that she wasn’t doing well and that she needed to find a better living situation and take care of herself better, but that she was “going to die soon anyway” and so what did it matter?

My heart broke for her—it still does. I often wonder what happened to her. She knew that she wasn’t taking care of herself, she knew it was going to lead to nowhere good, but she didn’t change it.

She is the type of person who is not eligible for transplant. You have to be willing to change things if they need changing. You have to be willing to fight for yourself. I don’t know if she was just tired by all of it—because we all have those days—or what. But she was pushing her body to its event horizon very quickly.

I also remember neighbors I used to have, senior citizens who were husband and wife. The husband had quadruple bypass surgery. His wife, a compulsive smoker, continued to smoke even after his surgery. She would laugh if off as we talked outside—I tried not to get too close either, because the smoke wasn’t good for me, but I didn’t want to be rude.

Transplant doesn’t just affect the patient, it affects the families. You can’t have certain pets in the house (ie, birds). No one in the house can smoke. Certain foods are off-limits for transplant patients (ie, grapefruit). The family has to be willing to support the patient through the process. You can be as wealthy as Scrooge, but if you don’t have someone to help you through it, that money is not going to help you get listed. There’s a psycho-social evaluation component to listing as well.

And even when all the stars align, that still doesn’t mean you will get a transplant.

My friend Sage died waiting. I have no idea why she died, and I didn’t. I have no idea why I’m here today, other than God must still have something for me to do. I got damn lucky and all the stars aligned.

There are not enough organ donors to meet the demand for them. This is especially true among minority populations. If you want to increase transplant equity, this is great place to start, and UNOS is already doing good work here, but it needs amplified.

It’s very easy to say, “Oh, it’s all about money” but it’s not. It’s easy to say many things about transplant that aren’t true.

But transplant medicine is the most intense high-wire act in all of medicine. Even when all the stars are aligned, it’s not guaranteed to happen. That’s the truth.

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.

Mid August Daybook

Flowers at the local French cafe

Outside my window::

Sunny and breezy—great late summer weather.

Listening to::

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

Wearing::

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

Grateful for::

Conversations with Di, Patty, and Johnny.

Good Echo results!

new knitting projects

Pondering::

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

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

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

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

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

Reading::

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

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

Creating::

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

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

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

To live the liturgy::

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

Around the house::

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

From the kitchen::

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

Plans for the week::

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

End of July Daybook

It has been so long since I’ve done one of these, but I saw that Elizabeth Foss has re-started them over at her blog and that gave me the impetus to go ahead and write this one! Because I like them and it’s been way too long since we’ve had one!

Outside my window::

It’s a sunny day, the grass and trees are green and thriving (see above photo!). It’s only going to be 81 today so that mens I can sit on my porch and read without frying to a crisp. This is excellent.

I am listening to::

In the car, it’s the Six * soundtrack. It’s so fun. I’ve also been working on learning Scottish Gaelic, so sometimes I tune into the BBC Scotland (Alba) channel and get a mix of Scottish music and talk radio—sometimes in English, sometimes in Gaelic. I’m really good at picking out the word “and”! (which is agus).

I am wearing::

You know, when the world shut down in 2020, it was so easy to get into the “I am not going to get dressed” thing, right? I’ve never been a person to leave the house in my pajamas, and I’m still not. But yes, my favorite leggings and a great t-shirt are sort of my summer uniform, along with a fun lipstick. (One of my New Year’s Resolutions? Wear more lipstick. It sounds really funny and sort of silly, but I love doing it now!) Generally my hair is up. When I’m dressed like this I feel like I can get a lot of things done, which is always a good idea!

Grateful for::

Talking to Maddie and my sister this morning—Maddie is blowing raspberries and it’s so cute.

Good weather

The local farmers’ market, which I remembered to visit yesterday!

A new baby to knit for

a local yarn crawl to attend!

Pondering::

Two big projects—but not writing projects. One of them is a wholesale overhaul of my apartment. The other is about gaining back muscle strength and endurance post COVID lockdowns.

The apartment is something I’ve been wanting to do for awhile, and this has two parts: the really deep clean + organizing, and then the decorating part. The two are sort of dovetailing because as I deep clean/sort/donate/organize things I notice things that need replaced or things I need to get to ensure things are running smoothly around here. The other part is replacing broken things with things that I, in some cases like better, like the lamp below:

This lamp is perfect!

The goal is to have the cleaning and organizing done by Labor Day. I think I can do it! The decorating will take a bit longer as I look for things that are good fits, like the lamp above. There was a lamp there that didn’t really fit the space or my style, but I kept it because I hadn’t found anything else I really liked. As soon as I saw this lamp (from Target) I knew it would be perfect, and it is. So then I was able to get rid of the old, broken lamp!

Another part of housekeeping is having the energy/stamina to do it, because I don’t always. If I get sick, the entire system collapses, so I need a better system, for starters, but that also feeds into the second project—getting my stamina back. Lockdowns did a huge number on my overall fitness, and so I’ve decided that I’m really going to re-focus on that. I’m doing Take Up and Read’s Well and Good summer program, and that’s been really helpful in addressing certain issues I’d been having. I’m not trying to lose weight—at this point, I want to be strong and be able to function on a daily basis, for myself, but also for Patty, Madeleine, and my new niece!

So I’ve been working out three times a week—the goal is to build that up to 5 days. The workouts vary but I can already seem changes in my stamina and strength, which is all for the good. And if I have more strength, I can do more around the house as well! It all works together.

Reading::

The King’s Pearl*, about Henry VIII and his daughter Mary; Mansfield Park*'; Taste: My Life Through Food*, and Theology of Home III: At The Sea. *

Creating::

a shawl—I’m in a yarn club so every quarter members get a special kit with an exclusive pattern, yarn for the pattern, and a knitting notion. I’ve been knitting through kits I have, and this is the one I’m on now—hopefully I’ll have it off the needles by August’s Yarn Along! I’ll have full notes there too.

To Live the Liturgy::

Today’s the feast of St. Martha!

Around the House::

See above! :) But right now the laundry is going as I write this.

From the Kitchen::

When I visited Diane, she taught me how to make sourdough bread and gave me some of her starter. I am most likely going to bake my first loaf with it within the next week. Fingers crossed!

Patty observes the process!

Plans for the week::

As we head into August my schedule is lovely and clear. August has two medical days—an Echo as part of my yearly transplant testing, as well as the whole day testing/doctor visit extravaganza. But other than that, the month is so clear and I love it.

"Life, London, this moment of June"

OK, I’m not in London. (The quote is from Mrs. Dalloway, one of my favorite novels.)

And June can actually be a really hard month for me, because there’s been a lot of medical crap that went down in June. (And I actually have a squamous cell carcinoma that needs removed—that’s next month—that I just found out about, but honestly, I don’t really care, we’ll handle it)

But this June? This June has been pretty fun.

Patty discovers…THE TENT.

I’m going to see Patty and her siblings!

Peanut (Patty’s newest sibling) is growing well! S/he is due in October.

It might be really hot, but it’s super pretty. This I the view from my porch. I love sitting here and reading at night. Right now I’m re-reading Emma* as part of the Jane Summer Re-Read.

Tiffany and I went to see the Columbus Symphony play at a local church as part of their summer night music programming. Cheaper tickets, don’t have to drive downtown, and don’t have to pay to park? Count me in. It was a beautiful program!

How’s your summer going so far?

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.

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.

Blogmas Day 11: Public Service Announcements!

To make this more fun, I give you: John Denver and the Muppets at the start.

So by the time you’re reading this, I’ll be at the hospital having a colonoscopy because I know how to start the year right! :-P

No, this isn’t a cause for concern—it’s regular screening because people with CF have higher rates of colon cancer. So we get to enjoy the special fun.

Anyway, the PSAs are: make your doctor appointments. Right now. Put them in the book. Schedule them.

If you’re a lady who is 40, it’s time to get mammograms! If you have breast cancer in you family, you need to get them earlier! They’re not bad, just do them!

Eye appointments, dentist appointments, all the appointments—make them. Do it.

And that is all I have for you today :)

FYI: The 12th day will be delayed due to the colonoscopy, but it will be out this week!)

(Well, and a Patty picture)

Patty and Dolly at the park! (With brother Frankie)

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.

Post-surgery, knitting, and a Bl. Emily

Sinus surgery was successful!

There was a lot of stuff in there, according to my ENT—the sinuses were actually “overflowing” (which I could’ve told ya.) It’s so nice to be able to feel air in my nose again! Yay!

So I’m taking the next few days to just putter and rest/work on house things that have been neglected during the massive “I have no energy because I have massively infected sinuses!” campaign. I want to work on my travel sketchbook and get some of my Amish Country sketches done/finished, and I have a few knitting projects that need repaired or blocked. I’m done with Madeleine’s blanket (she’s my niece!) and I’ve moved on to the next Christmas gift on my list, a scarf for one of my best friends.

Maddie’s blanket (not blocked)

And here’s a nice little treat for all of you—I didn’t know there was a Dominican blessed named Emily! You can read all about her here!

Detail of Bl. Emily in Bernadette Carstenen’s “The Dominicans”

How are you doing? Are you preparing for Christmas? Are you celebrating Advent? Are you doing both or neither? :)

Advent, St. Andrew, and Surgery

I feel like there’s so much to write about and I just haven’t had time to do it!

So, happy Advent! Happy New Church Year! Happy Feast of St. Andrew (on the 30th!)

Here’s a post I wrote on Advent and the Liturgical Year

Advent reading: “At the Service of His Plan”

Also, the St. Andrew Christmas Novena starts on November 30. This is one of my favorite “new” traditions—I picked it up about 6 years ago, and I love it.

Anddddd also I’m having surgery on W, Dec. 1 to finally get my sinuses cleared out! WHEEEE!!!!

Seven Quick Takes--Sinuses & Stats

-1-

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

-2-

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. :)

-3-

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

-4-

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.

-5-

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!

-6-

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.)

-7-

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!

Lies, Damn Lies, and Statistics

Diane and I as pre-schoolers, before my CF diagnosis. (I’m the blonde.)

I’ve never really liked statistics.

First off, they used to not work in my favor. 4% of the CF world gets something? That means I’m getting it. Get a bug that only one other person in the world has had? SURE WHY NOT (says Emily’s body).

Also, I’m pretty sure that my stats professor pity passed me, because I was a senior and needed a math credit to graduate (although I can figure out the number of possible combinations of license plates and combo meals, so….not totally wasted?).

Post-transplant, I tend to make statistics in a good direction—being 16 years post-transplant, for one. That’s a good way to end up a statistic.

However. The following, from an article I read last week, is not a good statistic.

Ninety-five percent of unborn children found to have CF are murdered.

(I will put the link to the article at the bottom of this post, if you want to read it for yourself and check out those links.)

I was first told that I shouldn’t exist when I was 15—a story I tell in my book. But since then, we’ve made amazing strides in CF research. There’s Trikafta and Kalydeco, for starters, which are huge breakthroughs in gene therapy that don’t just help CF—this technology helps people with dementia, as well as other genetic diseases. People with CF are living into their 40s and 50s, instead of their 30s. This is all huge.

But people don’t see that. They see problems. They see suffering. They see imperfection. They see a life that isn’t worth it. A life like mine is not worth it.

This is what I wrote on instagram about this:

I used to be pretty private about having CF. Not because I was ashamed of it, but because I didn’t want people making judgements about my capabilities based on that. I didn’t want their pity and I didn’t want their fear. 

But after my transplant, I became much more vocal, because I had to be. Because people “like me”—people with messed up chromosomes—are seen, more and more, as “defective.” As “unwanted”. As “wrongfully born.” 

This hit home yesterday, the 28th anniversary of my CF diagnosis. I read the statistic you see up there—that 95% of children diagnosed with CF in utero are aborted. 

Ninety-five percent of people like me are killed on a regular basis. 

I am a survivor, in more ways than one. 

I used to think that I was supposed to be a contemplative nun. In fact, this [9/15] is the anniversary of being told that I wasn’t going to be going on to the next discernment phase with a monastery. 

Now I know differently. Now I know that I am supposed to be in the world, telling my story, so that people can see that an imperfect, messed up, “defective” body can still give you a life that is joyful and worth living. 

I can become a saint with a messed up chromosome 7. 

I am here to show that life is worthwhile, but also, to deeply pray for those who do not see this. People who think that I am disposable—that children like me are disposable. 

I want to soften their hearts. 

I do want to soften their hearts. But I also want to bring this to light.

There are at least 2,000 CF mutations on chromosome 7. They can’t all be checked for in an amniocentesis. So there are children with CF who are bon, and then we have wrongful birth suits.

The argument behind these suits is that these children shouldn’t have been born, because, they will suffer. They will die.

NEWS FLASH: all of us will suffer. All of us will die. I understand wanting to protect your child. I understand feeling that this is your fault. (Although I’ve never thought it was my parents’ fault. It is what it is. The same genes that gave me my voice, my beautiful eyes, my mind, and sense of humor also gave me CF. It’s the shakes. It’s how it works.)

I cannot imagine how this child will feel, when he is old enough to search the internet, and see that his mother writes about how she doesn’t think that his life is worth living because he suffers.

What it comes down to, really, is this. That we think that suffering is somethign we shouldn’t have to do.

I was talking to someone on twitter about this, and his argument was that we should be able to “select” embryos that don’t have CF or CP or Down Syndrome or whatever, so that we can increase health and happiness. It was sort of like talking to Dr. Jekyll before he consumed his formula.

Health and happiness do not always go together. I’m definitely happier than some healthy people I know. In fact, the strange situation is that having CF has made me more sensitive to happiness, to good moments, to things that deserve to be celebrated. I didn’t get upset over not being class valedictorian (as I remember one girl in my class being). I didn’t get upset about a B-. I had perspective—and still have a perspective—that a lot of people lack, what my dad calls the “macro” view of life. That doesn’t mean that I still don’t get upset about micro (ie, small) things. I do. But it’s not something that’s going to destroy my life or make me question the existence of God, because I’ve learned too many things along the way and seen too much of God’s providence to dismiss that.

But all some people see is the bad side. The treatments. The hospitalizations, the IV courses, the PICC lines. I know that world. I’ve experienced it brutally, and I continue to experience it.

But to wish I didn’t have CF would be to wish I wasn’t me. It would be to wish myself away.

So many people see only what is wrong. They don’t see what is right. Statistics will never tell you that.

Article: “The Moral Panic About Eugenics Poses a Threat to Abortion Rights”.

I get knocked down, but I get up again!

“At the Millinery Shop”, Degas

If you weren’t a 90s kid/teen, you might not know this song:

(Yes, I just dated myself. And no, I’ve never seen the video, so I hope it’s not questionable. :-P)

(Also for some reason “Danny Boy” is involved. Never was sure why.)

Anyway, that’s a lot of what my life is like, and my dad said this to me yesterday.

“It’s like you start to exercise and have plans and then….you get sick! And you can’t do those things!”

“Welcome to my life,” I said.

And it’s true. It’s sort of frustrating, but it happens a lot. It happens in the hospital when I was 19 and had to learn how to…..sit up again. Or go to the bathroom unassisted. The body is durable, but it’s also surprisingly forgetful. “Huh? We used to ….sit up? All day? Nah.”

So that’s what’s going on right now. The Cipro caused my Achilles’ tendons, especially on my right foot, to get unhappy. Not so unhappy that something actually snapped or swelled, but enough that I went, “OK, we can’t use that foot.” I spent Sunday not putting weight on it, and most of yesterday was the same. It’s feeling OK today. I’m waiting on word from clinic to see if I should stop the Cipro early or if they want me to finish it and damn the torpedoes.

But….that means that my house was sort of a wreck. To put it kindly. Because I was sick most of the month of August, and then I got on the Cipro, which limited my movement, and even with limited movement, I still ended up with issues.

Fortunately my parents are a big help here and will help me dig out from under the avalanche of…stuff. But the other thing means that since I can’t stand for too long, I can’t really cook, which is detrimental both to health and to me, because I like to cook. I have lots of recipes I want to try out. But it’s hard because I can’t stand over something and stir or chop or slice. There is one recipe I have that I love and is really non labor intensive, so I’m making that tonight for dinner, but….I like to cook!

I am very thankful for my parents’ help (and my brother’s, when needed.). It can be hard to feel like a bump on a log and I hate having people clean up after me because I feel like the world’s biggest slacker. But…allowing people to help you in a part of growing in humility. So I’m growing, I guess.

The hope is that I’ve kicked this infection and I can resume regularly scheduled programming soon. I see my ENT next week and I’m going to see if we can do some antibiotic rinse in my sinuses to keep them happier long term, because I’ve been getting a lot of sinus things lately and I don’t really want that to continue (especially if my body can’t tolerate the antibiotics anymore….fingers crossed we can still do them.). So we will investigate some long-term solutions, if there are any.

All this to say that, yes, in life we have setbacks, sometimes huge setbacks, an it can seem like we’re not going to recover from them. But most of the time, we get knocked down and we get up again. :)

Seven Quick Takes Labor Day Edition

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Hi! Happy Long Weekend, US readers! :)

If you’re a subscriber, this post just landed in your inbox. If you’re not (and why not may I ask?), then: Ave Maria Press is having a Labor Day Sale! 10% off everything with the code LABORDAY21 at checkout!

So be sure to get your copy of Living Memento Mori (for yourself or friends!).

In the post I also talk about Ave’s new note taking bible. It’s great! And it’s also included in the sale! So you can check out my notes on that.

The sale runs through 9/6 (Monday). Hop to it!

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OK so in the last quick takes I said I was feeling better. Hahah I LIED. By the 26th I felt so crappy that I didn’t have the energy to make coffee. So I called clinic (called=emailed) and got a script for Cipro which is making me feel better.

However, Cipro is a strong (as in, it’s used for plague and anthrax) antibiotic and can mess with tendons. I don’t really like that, but I like that cipro works. I’m on antibiotics all the time as a matter of course so there’s not a whole lot to pick from when I do get sick that’s in pill form. It’s basically Cipro. So I’m used to it, but I don’t really like it. I mean I like feeling better but it’s still a nasty bit of work.

I have less than a week to go on it so that makes me happy, because then I can stop freaking out about my tendons!

And yes, I am getting back to normal energy, which is great.

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Since I want to not mess up my tendons, I’ve been doing a lot of sitting, which means reading and knitting mostly. Fortunately my Aunt Mary (who is also a bookworm of the first degree) sent me a box of books so I can have something to do while I sit! She sent me We Are the Brennans, Klara and the Sun, and A Swim In A Pond In The Rain.

So far I’ve read Brennans and really liked it. I’m reading Klara now, and I’m looking forward to Swim because I like Russian literature. (Mostly. I still need to read War & Peace which is in my library, mocking me for not reading it yet.)

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In Knitting, I have a lot going on but there was a Great Knitting Mystery Adventure this week.

I got a lot of yarn….

And then wound the pretty champagne colored yarn (Quince and Co Crane) for a project.

I was confused on said project. I posted it on Facebook to numerous excellent knitters. WE WERE ALL SO CONFUSED.

Finally, we figured out what to do. It was insane, my friends. Many minds were flabbergasted about this pattern.

But WE DID IT.

BEHOLD.

Anyway now it’s chugging along and is going to be a gorgeous shawl but man, figuring out this pattern was ROUGH!

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The rest of the yarn will be used for two shawls (I LOVE SHAWLS, OK? I really do. They’re so fun.) and a cowl. And yes, I am going to start my sweater soon!

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What are your weekend plans? Mine involve two dinners, lecturing at Mass, and…that’s it. :) But one of the dinners is for Tiffany’s 40th birthday!

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You know Tiff as the mom of Billy, most likely. Well, she’s pregnant again (with a little girl this time) and today is her 40th birthday!

Here she is with Billy…

And this is one of my favorite pictures of us. :)