Emily M. DeArdo

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Seven Quick Takes: Truth, Cold Bug, and Babies!

7 Quick Takes, Dominicans, family, health, knittingEmily DeArdo1 Comment

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Hello! Happy Friday!

Last week I didn’t write because I had a nasty cold/virus bug thing. It wasn’t the plague. :) But I had some dental work two weeks ago to replace an old filing, and some grossness must have come out during the work and flown right up to my left sinus cavity. For teh first few days it was just sort of sore throat, but then it became a nasty cold that had me pretty well sidelined. Sigh. At least I can take cold meds now—I couldn’t pre-transplant!

Anyway, mostly over now, which is good. Yay!

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This next bit is something that’s been gnawing at me for awhile, but it came to full flower yesterday. That’s the movement of people to not tell the truth. Not necessarily intending to lie, per se, but to not be accurate with their words.

During COVID, I’ve noticed this a few different times, and especially now with vaccinations. There seems to be a persistent myth—and it is a myth—that people who are immunocompromised can’t receive the vaccinations.

We can. I have.

So I’ve taken to calling people out on this—nicely!—when I see it. yesterday on twitter, I did this. The response I got was (and I’m paraphrasing): “well, we only have 140 characters, so we don’t have space to make distinctions.” I was told (and this is a quote) that I was “mincing words.”

No. I was being accurate.

The words we use do matter. That’s not just because I’m a writer and words are what I use to earn my living, but I think we all know that words can be dangerous or healing. Truth or lies matter, and facts matter.

It matters that people believe what’s true, which is that immunocompromised people can get the vaccine. Some people cannot get it, just like all people cannot get every vaccine. (I can’t get the shingles vaccine, because it’s a live vaccine.)

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Being told that it’s mincing words to want to be accurate—to be truthful—was very strange to me. (besides the fact that to “mince words” means to not be truthful or to beat around the bush. When people say “let’s not mince words”, they mean, “let’s be totally honest.” )

When I studied journalism and wrote for my college paper, the goal in writing as to get across the facts in as few words as possible, because all journalists (well, and all writers) know about words counts and space. To say that a word or character limit doesn’t allow you to be honest is…..weird.

I think it also bothers me as a Dominican. The motto (well one of the mottoes) of the order is veritas— “truth.” The order was founded to spread God’s truth throughout the world, not the “truth” that the Albigensians believed. Truth is important, in every sense. Jesus called himself the way, the truth, and the life. Truth isn’t “mincing words”.

So that’s been something I’ve been thinking about lately.

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Another thing I’ve been thinking about? BABIESSSS.

Here’s some Patty:

“Mom, I LOVE PAPER TOWELS!”

“Mom, I LOVE PAPER TOWELS!”

She’s 13 1/2 months old, is working on more teeth, and is walking like a champ. She can also walk while holding her mom’s phone and have a “conversation” (in baby talk) with you. And she kisses the screen, which I think is adorable. Her big siblings have gone off to school, leaving her and Johnny (seen above) at home with mom—at least until Johnny starts pre-school in a few weeks. (He won’t go every day).

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And in other BABY NEWS—My sister is pregnant! I’m an auntie! Yay!!!!! This is my first niece or nephew and I am insanely excited. Of course baby blanket knitting will begin as soon as my sister lets me know what colors she wants. I’ll be making the same one I made for Patty, just different colors.

Patty snuggled under her blanket. <3

Patty snuggled under her blanket. <3

Since Mel and her husband live in Colorado, I won’t have to worry so much about using wool, like I did with Patty, who lives in Texas! I kept worrying that she’d overheat under it, but she seems to do A-OK with it and takes her blanket everywhere, which makes me very happy. I hope that my niece or nephew love her/his baby blanket just as much!

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I’ve been re-reading/re-watching the Harry Potter series. (And the baby’s bedroom is Harry Potter themed!) And while I do that, I’ve done some HP knitting….

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For Christmas last year, Mel got me Knitting Magic, a book of Harry Potter projects. These are the horcrux washcloths, so there is a set of seven. I started with Harry, and then made Hufflepuff’s Cup.

Hufflepuff’s cup—it’s not as easy to see as Harry, but it’s there!

Hufflepuff’s cup—it’s not as easy to see as Harry, but it’s there!

Next up will be Ravencaw’s diadem. My Ravelry notes are here.

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The local school district has started back here, and Patty’s siblings all went back on Tuesday:

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Has school started back where you are?

Accommodations are not a "perk"

CF, essays, health, hearing lossEmily DeArdo4 Comments
An example of a lung function test result graph

An example of a lung function test result graph

As the talk about masking mandates ramps up again, I want to say something to all schools (high school and up)—where students and faculty can get vaccinated.

If you are requiring masks for all students and faculty, then please provide accommodation for students and staff who are hard of hearing/deaf and/or cannot wear masks.

When I was in high school and college, my lung function took a huge hit. As a sophomore in high school, I contracted non-infectious TB, which really destroyed my lung function. In college (also my sophomore year!), I almost died. I spent two weeks in the ICU battling a bug that only one other person in the world had ever had.

For the rest of my college career, I had between 19-25% lung function. In my senior year, I began transplant workup. I was sick.

I also started to lose my hearing my junior and senior years in college.

If I had been forced to wear a mask, I would not have been able to attend school. I’m not kidding. This isn’t a “psychological reaction” to wearing masks. It’s a fact, based on my heart rate, my rate of exertion, and my breathlessness when I wear masks and attempt to do anything now, when I have 54% lung function!

I could not have carried all my books around my high school building, let alone my small college campus. I would have not been able to breathe. I would not have been able to go up the stairs in my dormitory. I would have had to drop out of school, because there’s just no way I would’ve been able to do anything like get to class or understand what the professor was saying. This is not hysteria or hyperbole. By the end of my senior year I couldn’t get up a flight of stairs without being severely out of breath.

My hearing loss was fairly mild in college. In fact I didn’t get my first set of hearing aids until after transplant. But who knows if it would’ve been more of a problem if I couldn’t have see my professors’ lips?

Please. If you are in a position of authority to set mask mandates in a school or business, please provide accommodation for those of us who need it. We aren’t making it up, we’re not trying to be dramatic, we need to be able to breathe and understand what’s happening in class.

Seven Quick Takes: Links! Health! Patty!

7 Quick Takes, CF, health, transplantEmily DeArdoComment

I know that’s not a sexy title, but….

I’ve been writing about COVID related stuff a bit in the past year. And as we start to talk about masks and lockdowns again, I thought it would make sense to have an index post about COVID-related things.

The reason I feel this way is because I have, not to brag, a lot of hospital experience. I’ve been a patient in a hospital for many years. I know hospitals. I know lung stuff. I know about risk assessment and personal health.

So I feel like I should share my insights with you, for whatever you think they’re worth.

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COVID, antibodies, and transplant life: posted 5/24/21

This one is a bit of an outlier because it deals with transplant a little more specifically, but it also talks about acceptable risk a bit as well.

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Prudence, Acceptable Risk, and Medicine: posted 5/10/21

This was originally going to be a two-parter, but I haven’t written the second part (yet). The first part deals with exactly what the title says—the fact that every medical “intervention” (including taking Tylenol) has risks associated with it, and it’s our job to assess risks for ourselves.

It also talks about how people are in hospitals every single day, in ICUs every single day, and on ventilators every.single.day, because this is totally forgotten in reporting.

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Hospital 101: posted 11/23/20

Basically: “yes you can be in the hospital and not feel terribly crappy.” And, “No, being in the hospital does not mean that you’re going to die.”

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COVID and lung function: posted 7/7/20

Yes, you can recover lung function after being really, really, REALLY sick! If my crappy old CF lungs could do it, yours can too!

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So that’s the listing of the “big” COVID posts. I have some other things scattered in Quick Takes and various places, but these are the long forms, so to speak. I hope you find them helpful.

Here is Patty as reward! :)

She has EIGHT teeth! And can say cheese!"

She has EIGHT teeth! And can say cheese!"

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I went swimming for the first time in two years! YAY! It felt so great to be back in the water!

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And finally I wrote two posts this week! ICYM them:

An awesome clinic visit

The state of the Writing Wicket

Yearly Testing Wrap-Up!

transplant, healthEmily DeArdo1 Comment
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Yesterday was a very, very good—albeit hot—day at the New Resort, where I had my annual testing—the sixteenth edition!

Yay!

In short, everyone is very happy, and things are GOOD!

So, if you’re new here, let me give you an overview.

“Yearly Testing” is exactly what it sounds like—in-depth testing that I have done every year (duh) to see how my body and my lungs are working post-transplant. This is a great way to update baselines, to get a full picture of my body, and see how things are going. The “menu” changes from year to year. In the first five years, I got a CT scan every year, and a bone density test, and an ECHO and EKG. (I dislike ECHOs muchly, because I hate being touched around the breastbone area, and where do ECHOS take place? RIGHT THERE.)

This year, I had: lab work, full PFTs (I’ll explain that in a second), a chest x-ray, a treadmill test, and a bone density test, in addition to a visit with my doctor (Dr. K, whom I love. He’s from my hometown!)

My bone density test was a few weeks ago and it was fine. I am actually very proud of my bones. Prednisone can affect bone density, leading to early osteoporosis and other unfun things (and CF can do this too, since we can have poor absorption of nutrients—I don’t have this problem). So, my bones are excellent. Yay!!!! (I do take Vitamin D and Calcium supplements in addition to my love of eating dairy. :))

Testing day (Monday) kicked off with a visit to the lab. I have to say it’s much nicer now than when all the COVID things were in place, like temperature testing and all that. You can actually move through the lobby and hear people! (You still have to wear a mask in the hospital.) A very nice nurse accessed my port after we called clinic to get my blood orders because they were not in the computer. (This was repeated throughout the day, and I think it was tech gremlins, as opposed to the nurses not putting them in, because my nurses are conscientious like that.)

After that I had my “lunch break”, where I went to the local French cafe.

I mean, don’t you feel like you’re in France?

I mean, don’t you feel like you’re in France?

Here’s a tip for when you have to do things you don’t want to do, or are less than enthused about, or if you’re having a long day: plan good points in your day. For me, it’s stopping at this cafe and having delicious lunch. It’s a nice way to recharge and layer not-fun things with fun things.

(It’s not that I mind all the doctor appointments. I’m used to them. But it is a long day, with a lot of driving and meandering through medical halls in a place I’m still acclimating to [so I don’t always know where things are!]).

After this I headed to the main hospital for my chest x-ray (which, really, I could do in my sleep by now, just give me the button, folks) and “full” PFTs.

Generally PFTs involve something called “spirometry”—and that’s all I do at a regular appointment. This measures lung capacity (I’m massively simplifying here, if you want more, here you go) by having you take in a deep breath and then pushing it out hard and fast. So when I say I have X lung function, that’s how I know. I usually hang out in the 50s, which is good for me. This is because when I had my transplant, my donor was taller than I was, so my lungs had to be trimmed, so that lessened capacity, as it were, and my surgeon also nicked my diaphragm, which also affects function. But I mean, 50 something is a hell of a lot better than nineteen percent function, which is what I had pre-transplant. But it does mean that I don’t have “normal” capacity, and this is why I dislike wearing a mask so much—it feels like someone has clamped their hand over my mouth. And I did notice yesterday that I lost about 4% oxygen saturation when I had a mask on. So. Take that as you will.)

Anyway, for yearly, we do all the tests, which also measure exchange of gasses in your lungs and other things like “tidal volume” and diffusing and all sorts of things. I just look at the numbers. Unlike at the First Resort, the screen here is turned away from me, so I can’t see the numbers on the screen and have to check them out using MyChart or asking my nurses! But my doctor said they were good, so I’ll take that as they went up, or they’re the same.

After all this, I made a trip to the local yarn store, because I MUST GET YARN, and that was fun. I will discuss all this in a massive yarn along that I owe you and which will come in August. :)

And then it was back to the hospital for my visit with my nurse, Kim, and my doctor. We talked about results and basically everything is great—I killed it on the treadmill test and was super happy.

(Oh, sorry, treadmill test—basically you walk on a treadmill for 6 minutes while the machine increases speed and incline. I did much better than in February, probably because I’m back to living my life again, YAY!, and I feel much stronger. My oxygen saturation was 98-100%! Which is EPIC! YAY!!!!!! And my heart is doing its thing! Yay heart!)

As one doctor told me last year, “We just have to not break you.” At 16 years, that’s really the goal.

But the other thing? I don’t have to go back to see my doctor for a YEARRRRRRR.

Now, some centers have their patients hit this milestone after, say, 10 years. Or even five. I have been going every three months because, back in Ye Olden Times, my doctor’s office was on my way to work, and do to PFTs, which I need to do every 3 months, I had to actually go to the doctors’ office, because that’s where the PFTs lab was. So it made no sense to go in and not see my people!

However, now, the Resort is on the other side of town, and it makes less sense. So this is a GREAT thing! I can do labs and PFTs at a building off campus and just having those done is easy-peasy and takes less than an hour. So I can still have my fun French lunches and get my tests done so everyone is happy.

Obviously if something goes south, I will report it ASAP and then I might have to come in, but that’s how life is all the time and I’m used to that.

But this is a great thing and I’m really happy that one, my doctors are happy, and two, that I feel so much stronger and more fit. A lot of this is from, like I said before, just getting back to living my life, and also seeing Patty and Di and their family and going on vacation, but all of this is, again, LIFE. As in, not sitting at home not doing things! YAYYYYY!

So that’s how that went, I am very happy and thrilled that I had a good appointment and can now relax for a good long while! (Yes, I do get nervous about finding all these places and paring and all that stuff. It’s just part of the transition—going from a place where I had gone for thirty-six years and that I could walk in my sleep, to something big and new. It’ll get better.)

Prudence, Acceptable Risk, and Medicine

essays, health, hearing lossEmily DeArdo1 Comment
1925.3245 - Under the Wave off Kanagawa (Kanagawa oki nami....jpg

I’ve been debating this post for awhile, but I think the time has come for me to just write and get on with it. Also, this is gonna be long so settle in.

This is not about the COVID vaccine, really. The COVID vaccine, to me, is just the tip of the iceberg when it comes to the deeper problem, which is that we, as a people, do not know how to make prudent choices, or define acceptable risk for ourselves and our families.

This will be in two parts: This one, and then a piece about the moral/religious side of things.

(Some of these stories y’all have heard before, but they’re illustrative, so they’re coming up again.)


The first thing we need to talk about is the fact that hospitals are busy every single day of the world.

With COVID, people seemed to be shocked that people were living and dying in hospitals every day. People were in ICUs! (insert running around screaming gif here)

Folks. Yes. People are in ICUs every day. People are in hospitals every day. Hospitals, like all other things, have cycles—there were times when I was on the floor and it was pretty empty, and there were times where almost every single room was full. But yes, there are people in ICUs every day. There are nurses and doctors who work specifically in ICUs. These folks have jobs because ICU specialists are needed on a regular basis. (1)

I understand that many of you do not have the intimacy with hospitals that I have. But a lot of insanity was caused by the breathless reporting about ICU statistics and “people are on ventilators!”

Folks, I was on a ventilator for almost two weeks. Yes. It happens. Some people are one them for a lot longer. But this is not new. This is medicine. This is life. This is—often—death. People die in hospitals every day. In fact, whenever I drive by the former Resort, I think about that, and I pray for the people inside. It’s not just COVID that kills people, although you’d be hard pressed not to think that these days.

(We’ll come back to media coverage in a bit.)

This leads me to my second point, which is that….

Every single medical intervention has risks associated with it.

This includes the Tylenol you take for your headache, the Motrin for your PMS cramps, as well as interventions like being on a ventilator. Every single thing you put in your body can cause an adverse reaction, as anyone who has ever had food poisoning knows.

Life has risks. Driving to work has risks. Getting out of bed is a risk! Taking a shower is a risk! Everyday, we do something that might cause our demise, and most of the time we’re OK with that, because, life. (Drinking too much water has risks!) But when it comes to medicine, all of sudden we lose the sense of acceptable risk.

An example from my life: I lost my hearing because of ototoxic meds (Meds that are toxic to the ear’s hair cells). The choice was, destroy lung infections and stay alive, or not destroy lung infections and hasten death, but then have my hearing be fine. Now, at the time these medicines began to be given to me IV, we didn’t know about the ototoxic nature of them, and now doctors are more sensitive to that. (Yes, once again I pave the way for others!) But all that being said, the choice is—do you want to fight infection, or have great hearing. In my case, it was fight infection—even after my hearing had begun to deteriorate. (2)

Now, the other thing to do, if we know that certain meds or treatments are not good for us (or just cause bad outcomes) is to ask if there’s anything else that can be substituted. I have also done this, because there are some meds that just mess up my body. I have a gimpy right knee now because I walked too far on it when I was on a particular med. So now when I have a sinus infection we use something else, but it has the same risks associated with it, and now I’m just insanely careful when I’m on it (like, I sit on the couch for two weeks careful). But to not treat the sinus infection could—and probably would—lead to lots of other issues down the road, requiring stronger meds, and possible surgeries and hospital stays. no fun thank you.

When the idea of transplant first came up, I was scared at the idea of such a big surgery because I’d never had surgery before. My transplant ended up being my third surgery ever. (3) A lot can go wrong during surgery. I could’ve rejected my lungs immediately. I could’ve died on the table. But at the same time, the only way I was going to survive was to get the surgery (and this was assuming a donor was found).

So, there were risks to transplant, and there were risks to life without it. I made the choice to accept the risks and go forward. Not everyone does that. It’s their choice.

But with transplant comes other risks, mainly the one that I have a compromised immune system and am more susceptible to things (like, um, COVID!). But even within that, we have to look at choices.

Some people post transplant are afraid to open their windows if the grass is being cut. (I’m not kidding) They never go back to work because they’re afraid of infection. Etc. etc. I was never like that, because the point of a transplant is to live your life, while not being stupid (like, tanning—big no no for us, or drinking a lot).

What I’m seeing with the COVID vaccine is people saying, “But there are side effects!”

Yes. There are. They may happen to you. This is the case for everything. single. thing. Read a box of Tylenol some time. Heck, ladies, check a box of tampons—see all the Toxic Shock warnings on them? Yeah. Everything has side effects. Too much sun? You burn. Drink too much? Hangover. Etc. It’s the circle of life. When people just say SIDE EFFECTS! it doesn’t resonate, and it doesn’t come across as a good argument because everything does. (4)

For example: anti-emetics (aka, anti-nausea drugs). One of the most popular anti-nausea drugs is Zofran. Lots of people like it. It’s great. It is not great for me because it makes me throw up; ie, it causes the exact thing it’s supposed to prevent. This also happens with my mom and my sister. So we cannot take zofran.

But that doesn’t mean that I go around saying Zofran is terrible no one should take it there are SIDE EFFECTS!

Zofran is bad for me, but apparently it is great for many other people.

Now, yes, you might get the vaccine, and you might have side effects. It may even be prudent for many people, who are not as an especially high risk of COVID, to delay taking the vaccine. I can see that.

But to say a la Chicken Little that you won’t take it because SIDE EFECTS, and that’s your only argument, is not…a great one. If you say, “I won't take it right now because I might get pregnant and we aren’t sure of the side effects of the medication on pregnancies,” that’s prudent and valid. But if you just say “side effects!!!!!!!!!!!” it doesn’t come across as a reasoned argument.

Sometimes side effects are just going to happen as a part of the acceptance of risk thing. See, losing my hearing. See, chemo side effects. See, “I’m on prednisone for the rest of my life because I need to be and that leads to many things that are not great but I’d rather be alive.” For me, getting the COVID vaccine made sense because if I get COVID, that’s not good at all.

(Now, obviously, sometimes a side effect becomes not a side effect—like thalidomide in pregnancy—and it becomes a “feature not a bug”. That’s completely different than what I’m talking about here. And even that drug has good uses! Just not in pregnant people!)

For you, it might make sense not to get the COVID vaccine, or any other vaccine (like my sister can’t get the regular flu vaccine because she’s allergic to eggs). And that’s fine. But what’s happened is that everything surrounding COVID has become political. So we’re not really working from a clear choice here—we’re working from one that’s clouded by politics and all sorts of other things.

And this is what is lost: the idea that we can make prudent, acceptable risk choices for ourselves without being screamed at or told that we’re being idiots or saying that others are idiots for doing x, y, or z.

I make acceptable risk choices all the time, without even thinking about it, because after 16 years of transplant life, I know. That includes hugging my parents even before I got vaccinated, because hugs are good. (And yes, my parents mostly stayed at home before getting vaccinated—dad works from home). I’ve spent time with my friends in their houses! Because my friends know that if they’re sick, they shouldn’t invite me over, COVID or no COVID!

I have friends that don’t get flu shots. So in the winter, I tell them that if they’re sick, I will not be around them. It’s pretty simple. I don’t yell at them. I just state that if they’re sick, we’re not going to be hanging out. This is a choice they have made, and in turn, it affects a choice that I make. We both do risk assessment for ourselves.

But for some reasons we can’t do that with COVID.

People look at COVID and they see the death tolls and the case numbers every day and they think that it’s the worst thing ever. But there’s no context to this. It’s like if all you did was watch the news, you’d think that we’re all going to be eaten by sharks, or shot up outside the gas station, or kidnapped, or die in a plane crash. This is because the news reports the newsworthy, which is not, you know “1,000,000 in the metro area got home safely from work today!”

(NOTE: this is not to diminish the death toll from COVID. Most definitely not.)

But at the same time, with COVID especially, it’s giving us a twisted picture. We’re seeing “a patient left the hospital after a month today and everyone clapped!” “A person was on a ventilator for two weeks and came off of it and went home!”

This happens every day and it ties back to point one. Yes, it’s a great day to get the ventilator out, trust me. :) It’s a great day to go home after a month long hospitalization, of which I have had a few, because, you want to go home and take a real bath! (And, yes, I was also on the local news after my transplant because I was the first one at my center. You can actually find this on Youtube. No, I will not link to it. :))

But when that stuff is being covered daily, it gives the impression that this is the rarity, and it’s not, if you look at case numbers versus deaths. (Again, see note above.) Most people who get it will go home, or not be hospitalized at all. That doesn’t mean that the losses aren’t sad, because they are. But it does mean that by this sort of coverage, we’re skewing people’s perceptions of real risk. Again, it would be like if the news were doing stories about a person who came home from work safely every night for a week. It would make us think, gee, it must be really dangerous to drive to and from work!

You can only make an acceptable risk evaluation when you have the information in front of you without '“passion or prejudice”, as someone once said in a movie.

And you also have to trust your doctors. This is the final point:

a lot of people do not trust their doctors or the medical establishment.

I, for one, do trust them because my life depends on it. The very few doctors I have had in my life that I did not trust were overruled, thankfully, by doctors I did trust—or I had a come to Jesus meeting with them and said, hey look. (Or I went behind their backs and got information from the Pulmonology department, who is the apex doctor in my situation). I’ve had shitty doctors. My parents can tell you all the stories of the shitty nurses and doctors we’ve encountered.

But my “team”—my transplant pulmonologist, my transplant nurses, and etc.—I trust inherently. I’ve had the same therapist since I was 17—that’s 22 years! With these folks, I can get good information and decide what to do next.

If you do not trust your doctors, then…you’re sort of screwed, honestly. You need to find one you do trust, who also isn’t a charlatan who just tells you whatever you want to hear, because that’s not useful either. (ie, one who says that you can treat T1 diabetes with essential oils—no, you really can’t.)

Without trustworthy people, you can’t make good decisions because you don’t have all the information.

I don’t think that COVID is helping us trust the medical establishment more, as a whole, because we’re getting crazy messaging from the CDC and others in government that seem to contradict themselves many times a day. But at the same time, it’s a little bit like Congressional popularity: most of the time, people have a really low opinion of Congress as a whole, but they love their local guy.

We need to “love” a local doctor. We need to find medical people we trust, and can help us make appropriate decisions for our health and the health of our families. That’s one reason my parents got the COVID vaccine—because of me!

People die every day, COVID or not—and that you should realize that (memento mori, folks!) and use it as a catalyst to live your one life well. You are going to die of something. Let that knowledge encourage you to live well, make good decisions, and be prudent.

Footnotes:

(1) Yes, I’m aware that one of the big things at the beginning of COVID was worries about hospitals being overwhelmed. It was probably prudent to have shut downs in that time period, when we didn't have the information we have now, and when the risk of hospital overwhelm was real—and happening in some places. However, my point here is that there was breathless coverage of the fact that hospitals have full ICUs or have people on ventilators, which happens every single day, everywhere in the world. There was a clear exhibition of the fact that most people do not understand how hospitals actually work, and that people go in and out of them all the time without any fanfare.

(2) This is not a given. Anna Pavlova, the famous ballerina, contracted pneumonia, and was given a choice to have an operation that would remove her ability to dance, or die. She chose death, saying “If I can’t dance, I’d rather be dead.” She died of pleurisy a few days before her fiftieth birthday.

(3) The first one was a combo sinus clean-out and wisdom teeth removal, and the second was to place my port.

(4) Same thing happens when people toss around the words “toxins” or “chemicals” to just refer to every day stuff. There are chemicals in every single thing we eat, drink, inhale, and are. We are made up of chemicals. Same with “toxins”. Water can be toxic if you have too much of it.














Seven Quick Takes--Fourth Friday of Lent

7 Quick Takes, health, Lent, the bookEmily DeArdo2 Comments
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Hi everyone! Sorry no quick takes last week. I was on the last day of the Evil Antibiotic and my body was just blah. So there was no blogging, or really much of anything. But I feel much better now and my sleep schedule and energy and coming back! Yay!

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Most recent posts:

The Cardigan is DONE!

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Podcast Interview and Best Of List for Living Memento Mori!

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This Lent has been sort of meh. I didn’t really make a good plan this year, if I’m being honest. I did my usual things of no book buying and no chocolate but I wanted to stay off social media more than I have. So….Lent’s not over and I can still do something about that! I’m going to try to be better with set limits. How’s your Lent going?

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I am doing Stations of the Cross every Friday on my Facebook page during Lent, however!

(yes, I just wrote about social media and here’s Facebook. It’s the best way to communicate with video, I’ve found. IG live is sort of fiddly for me and I need to figure out videos without social media…it’s on my to-do list.)

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I post a prayer request thread every Wednesday on my page as well! So these intentions are prayed for during the stations and in my own prayer a well. We use the prayers from Living Memento Mori for the stations, so you can follow along in your own copy if you want.

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Here’s your weekly dose of Patty:

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She also got her blanket!

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And you can also clearly see her two teeth! She’s working on an upper tooth now, her mom says, so she’s sort of crank-tactic. This week she tried to eat a spider and was very put out when her mom didn’t let her.

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If you would like a signed copy of the book, they are $20 and they include a bookmark, a prayer card, and free shipping! Drop me an email.

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I’m still waiting for the second dose of my COVID vaccine to be scheduled. It hasn’t quite been a month yet, but it will be next weekend, so…..I’d like to know if I’m going to be getting it then! I am totally chomping at the bit to be fully vaccinated!

Seven Quick Takes--Second Friday of Lent

7 Quick Takes, Lent, knitting, transplant, healthEmily DeArdoComment
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Hi, everyone! How was your first week of Lent?

Mine was MEH. I thought I could get away with king just little social media. No, I really can’t. I need to be strict about it. So I’m really going to try to only use it for book/writing things and some random updates on my personal page on FB. Because man I use way too much SM. So. Time for timers!

In other news, we WILL start Stations tonight! 7:00 PM EST on my Facebook author page!

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Patty and her family are safe and warm in Texas. :)

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Patty was supervising her mom’s yard work when this was taken. :)

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I got my first COVID vaccine!

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Yayyyy! My parents and I all got it at a drive-through clinic here in town. It went really fast and really well. I did have a sore spot the next day, but it was minor. Didn’t stop me rom doing anything or sleeping on it.

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I had clinic on Monday. It was….special? I mean, not bad special. I get to go six months without being seen which is the longest I have ever gone in my life between pulmonology appointments, so yay! And my old transplant coordinator at Children’s is now at the New Resort, double yay!!!!! As I told my doctor, “We’re getting the band back together!”

But in some non-yays, I am learning the ways of the new place. The first thing being, they will not take you early. Doesn’t matter if they have time, doesn’t matter if the doctors are ready. They will not take you early. So I now know I don’t have to get up as early as I did, because if I’m there early I just….sit there. Until it’s my turn to be called.

Actually, you can tell this hospital is not used to people being on the ball, because they say they want you there a half hour before your appointment time. I’m assuming this is because people tend to be late. I, however, am almost never late. If I am late, I am probably dead. :-p So, now I know!

Also in the lab, I had a freak out with the tech because she saw all the orders for me in the computer—we were doing vitamin levels and that always require like 40 orders—and she freeeeeeaked. “Well, what do you normally have drawn?! There are orders from two doctors in here! Who do I call!? What labs do you normally get drawn?”

I do not know. I tell her that. She asks me again, in increasing levels of panic.

We did this about four times.

Then I had to give her the clinic number so she could….call and ask them if they really wanted all these labs.

It was insane.

If it’s in the computer….it gets drawn. Sigh.

But, everything was good. PFTs were good, a random treadmill test was good, everything was good. Everyone is happy. We’re working on getting my colonoscopy scheduled….what joy. :-p (it’s a little tricker for me because we have to use the port, and we have to make sure I have lots of anti-emetics (anti-nausea) drugs on hand because my stomach hates the prep. We’re talking projectile vomiting hates the prep, folks. )

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The nice thing about this clinic, however, is that it’s close to a French cafe and a local yarn store! So I went to the yarn store and picked up a really quick project—the yarnicorn cowl.

Knitting in clinic!

Knitting in clinic!

Done the next day!

Done the next day!

I’ve never used a really chunky yarn like this before and it was SO FUN. It’s from Knit Collage, if you want to check it out. I definitely am going to use more of this in the future! (I used the Lagoon and Nomad color ways here, in the Cast Away yarn.)

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Quick ad break! If you haven’t picked up Living Memento Mori, please do so? Support your local Catholic author! :) I also have a patreon, with memberships starting at a buck a month!

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Next week’s yarn along is going to be AWESOME because…..the cardigan is finished. But more on that next week!!!!!! :)

Seven Quick Takes--Feb. 11, 2021

7 Quick Takes, the book, healthEmily DeArdoComment
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Hello everyone! Happy Valentine’s Weekend!

Here’s your weekly Patty to kick us off….

Somebody really likes butternut squash! :)

Somebody really likes butternut squash! :)

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So yes, Lent starts on Wednesday…are you ready? Need Lenten reading? Pick up a copy of my book!

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Like I said last week, sales are super important, especially now that there aren’t in-person conferences (yet), so Ave Maria doesn’t have their awesome tables at these conferences to sell books! So it’s so important for me to get book sales, because they have sales goals for my book. So every purchase means so much to me and my publisher!

I am really awful at selling things. I hated selling Girl Scout cookies! But it’s part of the deal with writing in the 21st century, so, I do it. THANK YOU to everyone who has bought the book!

I will also be doing Stations every Friday in Lent with the prayers in my book, so come join us on Facebook!

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If you are using Living Memento Mori for book club or small groups at your parish, I will come talk to you! Yes! I will answer questions, talk about the book….whatever you need that can be done via Zoom. :) Email me to set things up!

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In the “well, you never know what will happen in Emily’s week” category: I spent Monday morning in the local ER because I was having crazy weird chest pain and I thought I might have pneumonia. So I went to get myself checked out. I’ve also been having productive cough, which I never have, so that also made my eyebrows go up a bit.

I was tested for heart attacks, COVID, pneumonia, and anything else—and I’m clear. So my body is ust being weird, and I think the issue with the coughing is that it’s coming down from my sinuses. I see my ENT next week so we can talk sinuses then but I wouldn’t be surprised if they needed some work. We’ll see, and I’ll let you know.

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I am FINALLY vaccine eligible on Monday! Huzzah!!!!!!! So we’ll see how long it takes for me to get scheduled with the local health department. Hopefully not too long!

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And in #emilyknitsacardigan news: I AM KNITTING THE COLLAR!!!!!!!





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This is the LAST STEP before I block the cardigan, and I am so excited. At this point I just knit 5” worth of garter stitch to get the nice shawl collar you see here:

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You can see that the collar is a pretty big design element here. So once it’s done I can bind off and block! And then wear it! I am excited!

(Unlike the photo, I will roll the cuffs on the sleeves. I have short arms.)

Seven Quick Takes--Let's Talk Lent

7 Quick Takes, books, health, Lent, knitting, the bookEmily DeArdoComment
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Hello friends!

From the blog this week: Yarn Along with progress!

Also speaking of yarn, I’ve started this Whatever the Weather knit along from Wonderland Yarns, and I LOVE IT. Essentially you take the low/high/average temp (whichever you choose) of the day, and that correlates to a yarn color. So you can see the temperatures of the year in yarn!

Here’s January—I chose the daily highs.

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It’s a “mystery” knit along because we get a new “clue” every month. I think that every month is going to have a different stitch pattern, bordered by garter stitch rows (at the top of the bit here, you can see the rows) . But that’s just my guess. And I love working with these yarns—they’re so buttery and squishy!

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OK let’s talk Lent.

First, get a copy of my book. Please and thank you. :) If you would like to choose your retailer, here is a list of places you can get the book. You can also get it from your local Catholic bookstore!

Really, though, every sale means so much to me. My publisher has goals for sales, and I want to meet them so I can write another book! This really is a team effort. So thank you!

(also please leave an Amazon review if you haven’t.)

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I will be praying the Stations of the Cross, using the Living Memento Mori reflections, every Friday during Lent (except Good Friday), on my Facebook page. Check the events tab for all the dates! (If you like my page then you’ll get updates and you’ll know when I’m going live, so that’s another option to following along!)

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Since I can’t give up anything food related for Lent, and I am also VEHEMENTLY TOLD NOT TO FAST, I’ll be giving up social media usage except for book related and Stations related things. Also no yarn buying. :) Normally I give up buying books during Lent, but given that I’m still sort of stuck in my hobbit hole until I get the vaccine, I’m letting myself buy books.

I want to use SM as a force for good—hence doing stations on FB—but I also have to use it mindfully. I’ve found a lot of good on social media—I’ve made wonderful friends and connections. But, gotta use it mindfully, just like any other tool or “thing”. This is also a very Dominican thing—things aren’t bad in and of themselves, it’s how we use them. And as preachers of truth, we want to use media! That’s how we get the Word (and the word) out!

I’ll also be doing the Consecration to St. Joseph again, as well as 33 Days to Greater Glory. Last Lent I read about St. John of the Cross and then I read his Dark Night of the Soul. Not entirely sure what I will read this Lent. Probably more of the books I have stock piled here? :)

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It is probably not likely that I will receive both doses of the vaccine before Easter. However I am VERY much hoping to get to Mass during the Easter season and then be back to normal Mass going and sacramental life!

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Next week is clear but then I have three doctor appointments to round out February: eye doctor, ENT, and then transplant clinic. I hope everything goes well but I will keep you updated.

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And finally, here’s your weekly Patty. She cut her first tooth this week!

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Seven Quick Takes--What a Week!

7 Quick Takes, health, knittingEmily DeArdo2 Comments
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Oh my goodness what a week around here!

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On Sunday I celebrated the birthday of my book! So that was a nice start to the week (or end of the week, depending on how you count the weeks!).

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Monday was…OK? I mean my body was still being sort of silly and my sleep was nuts, but it was all right.

Tuesday, however…..no bueno.

It began with finding an email saying that one of my favorite flower companies supports Planned Parenthood. This makes me sad and angry on several levels. One, that the lie that PP is for “women’s health” continues to have traction, whether or not people believe it or if they’re just parroting something that sounds good. Second, that people still think that being able to murder your babies is an OK thing. And third, that politics has to be in everything, even flowers!

Endo kept calling my parent about check in stuff and we couldn’t get ahold of them. (More on endo in a bit). THEN it was port access day, and my port decided not to work.

“Work” in this case means—get blood return. Really quickly: When you access a port, you put in the port needle, with a syringe full of saline attached (used to flush the line) and if the needle in the port, when you pull back on the syringe, blood will come out.

No blood came out. We tried several times.

So, this means that either 1) there is some sort of issue in the line that needs professional help, or 2)the port is broken. The port is 16 years old, so that’s pretty likely. They don’t last forever, sadly.

So I had to email Kim, my transplant coordinator, and see what’s up.

And then both my hockey teams lost in OT.

Tuesday was not good.

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Wednesday.

Kim gets back to me and asks me if I want to see what happens with my port when I come in for blood work on 2/22. I say, yes, let’s do that. If the nurses can’t get it, then we will try a dye study to see if the port is really broken. And if it is, then surgery to remove the old one and put in a new one, which I hope fervently will be a POWER PORT! A power port means that I can get CT contrast through that line! Yayyyyyy!

So, OK, one issue dealt with. The port doesn’t hurt me, so the fact that it’s not currently working isn’t a huge deal.

I have an endocrinology appointment so my parents have to play phone tag with endo and I wail about how the fact that they won’t email me is just insane. Sigh.

So, the office is crazy, but my doctor is good, and I really like her. My appointment with her goes really well; my A1c has dropped two percentage points since last year, so that’s great. She’s “not worried about me” and is pleased with my progress. (I really like it when I don’t worry my doctors.) We make a few little insulin tweaks and set up some more appointments, including an education appointment. So I’m really glad that endo went well.

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And I was so glad that endo went well, and I was all dressed and pretty, so I went to the local yarn store! I had emailed them earlier in the week about stopping in for some help and the owners graciously said yes! (Knit ins aren’t happening right now, obviously, but this was OK.) So with the help of one of the wonderful owners, I finally have figured out how to pick up stitches for my cardigan collar! Huzzah! The end is near!

And then Ince I was there I had to get more yarn, right? So I did. Firstly because the woman had given me her time—she really had, she sat by me until I said I was comfortable doing it!—and also because…..YARN.

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Behold the pretty—this is all Wonderland Yarn from Frabjous Fibers in the Mary Ann fingering base. Tonals: the bright turquoise, called Seaography; variegated: Biscotti, from the Tea Time Collection (the cream/gold/sienna speckle), and then the last two are from their De-Stitch Nation special collection: Jerusalem and Egypt.

Right now I’m thinking about doing a Free Your Fade shawl with Seaography, Egypt, and Jerusalem. Biscotti is a great neutral that will work with anything and makes me really happy.

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The other issue is vaccine roll out here. I am in group “1b” , but that’s been a group that’s been subject to a lot of political pandering. I might not get the vaccine until February 15 because, while I have lots of health issues that are in this group, I don’t have intellectual impairments. I’m not sure how that affects your immune system, but…..the state has decreed it so. Sigh.

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So yes it’s been a busy sort of insane week. But there are good things in it, as always. Like Patty!

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She’s scooting now and it’s so cute—her mom video called me to show me. I just adore this child. And check that dimple!

As soon as I get vaccinated I am RUNNING to see her.

No, You Cannot Cure CF with "Diet"

CF, health, transplantEmily DeArdo4 Comments

(I’m doing a book giveaway this week! Enter here!)

I see a lot of crazy things on the Internet.

One of my favorites (sarcasm mode) is that you can “cure” every chronic disease with diet.

Um….


No, you can’t.

No diet is going to make chromosome 7 magically work in me.

No diet will fix the fact that I have CFRD (CF Related Diabetes). It will not make my pancreas magically make insulin.

I am really, really tired of this crap. Stop it.

When I visited the CF dietician back in the day (I don’t need a specific CF dietician anymore) the rule was “eat as much of anything as you want” as long as it’s not diet, low-fat, or fat free. EAT EAT EAT. We were always trying to find ways to pour more calories into my body. Milkshakes. Ice cream. There was calorie powder!!! (I am not kidding.)

That’s because when you have CF, your body burns an incredible amount of calories just trying to maintain your baseline. Coughing takes a lot of energy. EVERYTHING takes a lot of energy. Oh, and salt? You want a LOT OF THAT. Popcorn. Peanuts. Potato chips. Because your body loses a lot more salt that everyone else’s. So in the summer, I’m all about the sallllt.

When you see things that say “diabetes can be reversed with diet” they are (I hope) talking about type two, and yes, in type 2, what you eat does matter. It matter a lot. You can try to fix it with what you eat. But if you are a T1 person, you cannot. It’s not possible.

And also, if you have T1, you actually need sugar sometimes. There are times when I am commanded to eat candy and pizza and drink orange juice! (hopefully not at the same time!)

While I’m fixing health lies, let’s fix another one: You do not just “get a transplant.”

If you need one, you might not get one. If you smoke, you must stop smoking. You are tested for cigarette usage in your labs. If you drink and you need a liver transplant, you need to stop drinking.

Do some people do stupid things post-transplant? heck yes. And these are people who get kicked out of their center’s program and are not eligible for another transplant, should they need one.

But the vast majority of the time, centers are hard core about making this sort of behavior STOP before, because there are so many people that need transplants. If you’re not going to take care of the organ, then you’re most likely not going to get one!

And it’s hard work to qualify for a transplant. It’s days of tests and evaluations by multiple people on a multidisciplinary team. The idea of “just getting a transplant” is laughable to me.

2020 taught me a lot about how little the average American knows about hospitals, illness, and ICUs. (And germs.) But in 2021 I’m seeing a lot of misinformation about what a “good” diet can do for your body.

homemade bolognese. YUM.

homemade bolognese. YUM.

Good food can help you in a lot of ways. So can exercise. But it does not cure everything and people who say it does are charlatans, up there with the “essential oils cure ebola” crowd.

So, now you know! Go and use your knowledge. :)



Seven Quick Takes--A Word for 2021

7 Quick Takes, healthEmily DeArdo2 Comments
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Hi everyone! This is going to be a sort of different 7QT today, but I will start off with a link to the first yarn along of the year, in case you missed it. :)

So today I’m writing about my word of the year for 2021. When I’m doing Power Sheets prep in November and December, this comes up—what do I want my word to be for 2021? Last year it was “discipline”—trying to create rhythm of life in my work and in housekeeping and things like that. Well, rhythm sort of went out the window in 2020, didn’t it? :)

In 2021, my word is LISTEN. Listen to God, listen to my body, and listen to my gut.

Listen to God is sort of easy, right? I want to listen to what He wants from me, so that means I have to make time to be quiet in prayer and give time to Him in deepening our relationship.

Listening to my body is harder. As I write this (Thursday), I don’t really have any energy. I didn’t sleep for most of the month of December. What I mean by that is that I’d fall asleep around 3 AM after taking something to help me fall asleep, because I’d be trying to fall asleep for the past three hours, and the I’d force myself up seven hours later. I need nine hours of sleep a night. I was getting less than that, on a regular basis and the sleep I was getting was crappy, really hard sleep ( you know what I mean?). At 5 AM on Christmas morning my phone alerted me to a low glucose reading so I went down to my parents’ kitchen to give myself some orange juice, and then I realized that part of the sleep problem was probably that I was giving myself too much insulin. I was giving myself insulin around 8/9 :00 with my evening meds (because I eat with them) and then more when I went to bed. I didn’t need that much, and I’d been seeing low morning glucose numbers for awhile—not really low, but low-ish. I thought that was OK. But then I’d looked back over the night and seen that I was dipping to the low “danger range” more often than I’d like.

So for the past two weeks I’ve tried not having the snack insulin dose (which was something I had suggested to my team, not the other way around so I didn’t feel bad skipping it.) For the first few nights I slept hard and had really vivid dreams. I’ve been sleeping better, but I’ve also been low in energy meaning that I think my insulin is off—again—because I’m running high at night now. So today I finally sent an email to my nurse asking if she had any suggestions.

I clearly need to listen to my body. It’s tired. It doesn’t have a lot of reserves. It needs to sleep, to sit, to recuperate and recover from whatever. (No, I do not have COVID. :) ) And I’m trying not to listen to it because I have stuff that needs to be done that’s bugging me, like laundry and dishes and putting sodas in the fridge (Diet only. :) ). I’m falling asleep earlier, but I’m still sleeping 12 hours a night and I hate that—even though I know my body needs it.

So listening to my body? Yeah. I need to get better at it, especially when it’s yelling at me like it is right now. I need to stop thinking I need to get everything done and realize that my body does not, at this moment, have the capacity to do things like HIIT workouts or even a lot of puttery housework. It needs water, naps, and recovery, and easy workouts like stretching and slow, yin yoga. Nothing hard or intense.

Listening to my gut means that I stop doing things that I don’t really want to do or think I’m not suited for because I want to be “nice.” I want to not let someone down, I want to be a team player, I want to be reliable. My body, first off, doesn’t always let me do that (see above!). And second, if I’m forcing myself to do something, am I doing my best work? I don’t mean skipping out on things that I have to do based on previous commitments. I mean taking on new things new work, new commitments. Do I really want to? Am I excited about it? Do I have the margin to do it?

Right now, my body is saying, “Emily, you have no margin. You need to take care of ME.” And if my body isn’t happy then I can’t do anything anyway, because it won’t let me!

So, as frustrated as I am right now, I know that listening to my body will pay off. I just have to do it. I have to listen to God and see what He wants from me. And I have to listen to my gut, to see what I’m feeling about projects.

That’s my word for 2021. What’s yours? Do you pick a word of the year?

(Oh, and also: cute Patty for you:

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Hospital 101

healthEmily DeArdoComment

If there’s one thing I’ve learned in 2020, it’s that an awful lot of people don’t know what “hospitalization” actually means.

So I think it’s time to educate y’all!

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There are many reasons why a person might be hospitalized. Here are a few reasons I’ve been “in house” (the hospital term for being in the hospital):

  • To receive IV antibiotics, and I basically felt fine.

  • To receive surgery and recover from it (or, to receive procedures and recover and go home—these are called “23 hour admits.”).

  • Because I’ve needed fluids and pain meds around the clock, and regular labs to verify how things are going in my body.

  • Because I felt like crap and needed lots of therapies and needed to be carefully watched.


My first admit for CF, in 1993, was one where I felt pretty good. I mean, I played in the playroom, I did wheelchair races in the hallway, I wasn’t lying in bed. But I needed IV therapies, I needed albuterol therapy, and we had to learn about CF. So I was in the hospital to get that intensive training and therapy. But I felt fine. (Well, as fine as I normally felt!)

Later on, I’d be in the hospital for a few days if I needed IV meds. We’d do them, make sure I was tolerating them OK, and then I’d be sent home—on the IV meds. I went to school with an IV in. I went to work with an IV in. I just did the meds when I needed to do them. (Now, apparently, this doesn’t happen as much, which I think is ridiculous, but….I digress.)

“23 hour admits” are basically admits where I might stay longer, but the plan is to get me out that day. This is how we used to do bronchs, or even things like pH probe tests (AWFULLLL). You’re in for a day or so, and then you go home. When I had my cardiac ablation, I was in for a few days, we did the ablation, and I went home soon after. Again, didn’t feel too crappy. On with life.

Sometimes yes, I do feel like crap, and I need to be admitted! But even then, this doesn’t equal DEATH. When I have pancreatitis, 99% of the time I will be admitted, because the “cure” for pancreatitis is pain meds and fluids, along with regular blood draws to check certain enzyme levels which show how the pancreas is doing. Now, being in pain isn’t fun and being hungry isn’t fun, so these aren’t the most fun admits, but generally, they’re not EMERGENCY LEVEL PANIC admits.

Then we get to the last category, which is, “Yes, Emily is very sick and needs to be in the hospital to make sure bad things don’t happen.” These are not fun. The upside is that you get to sleep a lot (or I did anyway.).

Being in the hospital does not mean “WOW SO SICK” just like being in the ICU doesn’t mean “DEATH!” It just means that you need a certain level of nursing care and medication. Whenever I needed cardiac cardioversion (aka the paddles), I was always admitted to the ICU, for monitoring. I felt OK once the pain meds were on board and I had stopped vomiting. :) But I was in the ICU because things could go south and then we’d need to work fast. But I was a pretty easy patient for the nurses on those nights!

Sometimes, yes, the “hospital census” (aka, in patient number) is high. Sometimes you have a lot of people in the hospital, like….during cold and flu season. Hospitalizations tend to go up then, because people get things like pneumonia (which I was hospitalized for a few years ago), or other things like that. Sometimes you might need to be in house but aren’t admitted like the one time my doctor had me deal with pancreatitis at home (which was….weird, but anyway). Sometimes, yes, I have waited in the ER while a room was made ready upstairs.

Some hospitals have observation rooms in or off the ER, and some don’t. These can also be used to “hold” patients until a room on the floor is ready. In January that’s where I stayed when my BGLs were wacky and endo finally….gave me insulin. (Sigh.)

That’s not to say that hospitals can’t be overwhelmed—they can be. (See, OSU ER trip in January where we waited for eight hours which has never happened in my life.)

But what I want you to take away from this is the idea that hospitalizations or ICU usage means a lot of people are at death’s door.

Also remember that people are in hospitals every day for a lot of things (see above), and are in the ICU for a lot of things every day. I’ve done three (four???) ICU stints now and I’d prefer to not to do it again because it’s sort of un-fun but I was in the “census” as an ICU patient, even though I wasn’t really at the level of an ICU person (see cardioversions above!)

All a census number really shows is how many people are in the beds at the moment. That can change based on a lot of factors. For example, NCH used to try to discharge a lot of people before the holidays. If you could go home, they wanted you to go home because who wants to spend Christmas in house? NO ONE, REALLY.

So I hope this gives you a slightly better insight into what a hospitalization can be, if you’ve never really experienced one yourself!


Hi! (And a health update)

healthEmily DeArdo2 Comments

Hi y’all!

Let’s start with my current favorite Patty photo:

R

RAWR!!!!!


So I promised you a health update and it’s been awhile in writing it, because there hasn’t been much going on so I felt like, “why write?” But then I remembered I owed you this. So!

There really isn’t much to say. Which is nice. The gallbladder surgery went well, I’m healing nicely (because of the prednisone and the diabetes stuff it will take longer for the incision spots to totally heal, but that’s OK, I don’t care.). Eye survived the corneal abrasion!

This week I am being trained by endo in using my InPen. An InPen is a “smart” insulin pen. It has an app, it communicated with my continuous glucose monitor (CGM), and it also does math for me. I am really looking forward to that feature, you better believe it. It can be nuts to try to figure things out.

It also has a nifty little feature where it tells you how much insulin is “on board”, meaning “active” in your body. For people with normal pancreas function, your pancreas just pumps out insulin when it needs to. You don't have to worry about supply. Diabetics do. One of the things that is frustrating—at least for me—is not knowing how long insulin “lasts” in the body. So basically every time I’m eating a meal I’m dosing based on my CGM numbers, but that’s not entirely accurate, because we don’t know how much insulin is still floating around in my body. (and if you give yourself too much insulin, that causes….weight gain. How fun. I mean it can also cause other not fun things, but…..yeah, I’m focusing on the weight bit.)

With the InPen, I should—I think—know how much is in my body already and then be able to do more accurately. I can also does partially. So, right now, if I should give myself 5.5 units of insulin, I can’t do that with a regular pen. I have to either do 5 or 6. With this pen I can give the 5.5 dose. So being able to do half doses doesn’t sound big, but it adds up in the long run to create better control.

So that’s all on Wednesday. I’m looking forward to it. (Also the InPen is bright pink so it’ll be easy to find in my bag, but it also comes in blue and gray.)

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So, weight and insulin, we can talk about it briefly.

When you’re not getting enough insulin, you lose weight really easily. That was me last Christmas. I was like, wow, I lost all his weight without trying! HOW AWESOME!

And then we realized, oh, Emily needs insulin.
When you start insulin, you gain weight. That’s how it goes. Sometimes you need to gain that weight. In my case I …..really didn’t. But them’s the breaks.

Now that I’ve been on insulin for almost a year, we’re reaching good therapeutic levels so I think we’re done with large adjustments, and I’m hoping that I can start to drop some weight because I won’t be giving myself crazy amounts of insulin (because insulin you don’t need? Stored by the body as fat. Yeah, FUN TIMES.).

I have been working out during the pandemic by doing an at home program, which I have actually liked. So that’s helped and that’s made my doctors really happy. My PFTs are good, so that’s also happiness causing. But right now I’m hoping I can turn a corner on weight and start to drop some pounds, even though with COVID I think we’re all realizing that’s easier said than done….I haven’t been in a grocery store since early March. Yikes. (That sort of activity—that daily stuff? Not having that has been an issue. Also an issue—being subjected to what APN has in stock.)

In December I see my dentist, my ENT, and my dermatologist, so hopefully those will all be good. I’m anticipating they will be. The dermatologist is always sort of iffy because you never know what she’ll see that I don’t think is an issue or that I can’t see (like, things on my scalp or my back). But from what I can tell things are OK and it’s not like I was going out in the sun a lot this year anyway. :)

So that’s the health update! :) I’m still alive and kicking, which is good!

Clinic: "Rock solid"

healthEmily DeArdo2 Comments
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That’s what the transplant pulmonologist said to me—things are “rock solid”.

So that’s always good to hear! I met a new doctor today who had a great sense of humor and is on top of things, so that makes me happy about being at OSU right now. I had, of course, Dr. K, who is my “main” doctor, but it was nice to know another doctor and to like him. I also met another transplant coordinator who I also liked! So this is good.

(And I got my flu shot. Get yours, please and thank you!)

So the day is different now than how clinic used to be. At The Old Resort, it was all in one building, so that was nice in that once you were in, you were in. And the parking was in a garage, so you never walked outside.

Now I start my day at one place, an outpatient center, where I get blood, x-rays, and PFTs done. It’s two buildings connected by a covered walkway, so you walk outside and the parking is outside (but it’s free, so….). Once all that’s done, I go to the main hospital for clinic. There, parking is in an excellent garage, but you have to pay (you get “validated” parking, but I think it’s only good for like two hours. BOO HISS. After that you have to pay.).

Anyway, today I met the new nurses who will be accessing my port—both of them are very nice. But in that building, it’s 98% cancer patients (and post-transplant folk like me who have port draws.) The “tower”, as it’s called, is 11 floors, and it has oncology doctors, clinics, infusion for chemo, etc., etc.

So I was surrounded by cancer patients, and one, in particular, looked so cold and sad that I just wanted to hug her, wrap her in cashmere and bubble wrap, tuck her into bed, and feed her about 50 Frosties. It’s 70 here right now, and it was about 55 this morning, but she looked absolutely frigid. So, please pray for her and all the other cancer patients?

After that I went to visit the radiology folk and then the PFT lab, where I had Ashley, the same tech I had last time, and ho is really nice. So that’s all in and out.

But anyway, yeah, “rock solid.” The doctor today said his job is “not to break me” since I’m so far out. And that works for me—I like a doctor who takes that sort of approach!

So that’s the clinic wrap. Next appointment in three months!

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We're BACK!

health, writingEmily DeArdoComment
Sam guards the books

Sam guards the books

Hi everyone! I’m back! :)

So the surgery went well. I had my follow-up yesterday with my surgeon and he’s happy. Apparently my gallbladder was very inflamed and angry, so I am glad it is gone! And I’m also betting that the prednisone I take sort of took the edge off the pain of an angry, inflamed gallbladder, so thank you, prednisone! :)

The plan was to stay one night at my parents and then come home, but then, in the middle of the night on Thursday, I managed to scratch my cornea.

While I was sleeping.

And I have no nails. I’m a chronic nail biter. So how I managed to gouge my eye is….a mystery of life!

So the next day I woke up and had lots of pain in my left eye. Which meant we went to the local ER! And lo and behold, I had a corneal abrasion! Not fun!

So I had Cipro eye drops for a week. (I’ve had Cipro orally, but never this way, so, new frontiers in medicine….) That ended last Friday. My eye is much better but I still have to wear my glasses and no makeup until I see the eye doctor this Thursday (as in, in two days).

WHEW.

Anyway, I just wanted to let you know that things went well surgically and that I’m recovering nicely. The last two episodes of the Living Memento Mori book club will be next Tuesday and the following Tuesday (September 22 and September 29) at 3:00 PM EST on my Facebook page.

And in the last piece of news, I wrote a quick piece on Flannery O’Connor and put it up on my Patreon page. If you want to read it, join Orchard House Studios! Monthly memberships start at one dollar! There’s a bunch of other patron-only content up to!

And I’m featured on the new Spoken Women Site!

So, I’m back, and so is football—Steelers won and Pitt won, so I’m happy to have both teams at 1-0 after week one!

How are you doing?

Seven Quick Takes--Gallbladder Surgery Scheduled, Cheers Throwback, and More!

7 Quick Takes, health, the book, travel, Jane AustenEmily DeArdo2 Comments
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Hi, y’all!

So the big news is that I am having gallbladder surgery on September 3. This isn’t actual big news, per se. I mean, yeah, my gallbladder needs to come out, but this is more of “removing a thing that is annoying” vs. “removing something that will make me feel a lot better”, because it really doesn’t bother me that much. And seriously, when you’ve had pancreatitis as much as I’ve had it (at least 10 times), abdominal pain isn’t new. I’ve been dealing with it for 20 years now, and we can’t take out my pancreas. But it is nice to have an annoying thing taken care of, that’s for sure.


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Couple quick notes re: the blog!

I have a newsletter that goes out once a month to subscribers. Subscribers also get special discounts and other goodies. If you’re not a subscriber, fix that here.

Also if you would like a signed copy of Living Memento Mori—Christmas is coming, people!—email me. They’re $20 and that includes shipping, a bookmark, and a prayer card, both of which were specialyl designed by Ave Maria Press for the book!


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Was sad to see that the Cheers bar in Fanueil Hall Marketplace in Boston is closing—Dad and I went there after my Jeopardy! tryout in 2015.

Some snapshots:

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It was a dang good burger! Dad basically ate Boston Clam Chowder whenever he could that weekend. :)

It was a dang good burger! Dad basically ate Boston Clam Chowder whenever he could that weekend. :)

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(Quick bit of Cheers and Emily medical history trivia: I was in the ER for a broken wrist the night of the Cheers finale. My softball team was in the playoffs and we’d been practicing. I played third base, and the left fielder and I got into a tussle about the ball. We both went for it, and my wrist hit the ground. I had CF at the time but we didn’t know it, so that’s probably why the wrist broke. But yes, I did play a sport, and we were undefeated in the regular season that year!)

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Speaking of exercise….I found this article to have some good tips. She’s definitely right about making it part of your routine. Starting last month I really focused on creating a good daily routine that works for me. Obviously, it’s still in progress, but this is what I do so far:

  • I prep the coffee and my insulin pens the night before—KEY. Even if I do nothing else before I go to bed in terms of cleaning or prep, I do this, because it makes the next morning go much more smoothly.

  • In the morning, I switch on the coffee and dose myself with insulin. I have to wait 10 minutes before breakfast (so the insulin can take effect) and while that’s happening…

  • I say lauds from the Liturgy of the Hours and read the daily Mass readings.

  • After that, 10 minutes is usually up, so I eat breakfast. While I eat breakfast I check my email and social media and do any blog or “business” stuff I want to do that day, like setting up the newsletter or updating a mailing list.

  • After that I do my duolingo—I’m learning Italian and Scottish Gaelic!

  • And after that, I exercise.

That’s my morning so far! After exercising it’s usually time for lectio, spiritual reading, or a bit of knitting before lunch. Sometimes this is where I do some cleaning/tidying too—I’ll start the dishes if they need it, or the laundry if it needs it.

(I’ll actually write more about this in an upcoming blog post, so keep your eyes peeled. :) )

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This piece, on Fanny Price and Mansfield Park, is basically a shorter version of my undergraduate thesis. Fanny is awesome and more people need to appreciate her! Read Mansfield Park!

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Patty’s blanket is moving along—I’m about done with the first set of four stripes, so YAY! I’ll. have some updated photos for you soon, I hope. :) I keep forgetting to take pictures!

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Have you gone back to Mass/church yet? How is it? I’m thinking about going back because honestly I MISS IT!



COVID and Lung Function (ie, you can recover lung function!)

healthEmily DeArdoComment
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One of the things I keep seeing about COVID is that people recover but have a loss of lung function. And every time I see this, I roll my eyes.

Here’s why.

(For new folks: I have CF, I had a double lung transplant 15 years ago. Pulmonary issues are my bag.)

So, let’s talk about lung funciton.

There are actually different types of lung function, but the type most people are probably talk about it spirometry, which is how much air your lungs can hold, and how much you can blow out in a second. It diagnoses various things and it can tell how much function you have—ie, how many liters of air you can get in your lungs, ie, a percentage.

So, right now, my lung function is about 54%. For me, this is good. This is where I’ve been pretty much since transplant.

Lungs are essentially really strong balloons. If you have normal lungs (ie, not CF lungs), then when you get sick with something like pneumonia, you do lose some lung function. For example, when I had pneumonia a few years ago, my lung function dropped to about 30%. Now, it’s not at 30%—it’s at 54%. Your lungs do recover, just like any other cells in your body. Damaged cells out, new cells in.

As you get older, obviously, this process slows down, and if you’re a smoker, you’re ruining your lungs all the time, STOP IT.

For something like COVID, yes, you will lose lung function initially. We don’t know enough about it to see if this lasts permanently, but my guess is that it doesn’t. Lungs do take awhile to recover. They just do. It’s part of their charm. (Not.) But unless you have CF, which impedes the lungs from healing, then you’re going to be fine, eventually. And even my old, crappy CF lungs recovered to an extent, even after I’d been in a medically induced coma, on a ventilator, for two weeks.

So, if my old crappy lungs could do that, yours can too!

Losing lung function is not the end of the world. Even with 21% lung function, I was in college, I double majored, I had an internship. You can live on it. The problem for a lot of you will be that you’re used to having really good lung function and suddenly it’s gone.

It will—most likely—come back. You have to be patient with the process.

So when I see people freaking about losing lung function, I want to tell them to relax. It will come back. The fact that you’re alive is a miracle, to quote Hamilton. You can get lung function back. It does happen—pretty much all the time, folks. There are also things like pulmonary rehab, which can help you gain back lung function via exercise. There are ways!

So, if you get COVID and you recover, your lungs will recover too. Give them time.

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

7 Quick Takes, health, transplantEmily DeArdo1 Comment
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OK so first, here’s a lovely interview I did with my friend and fellow author Andrea Green Burton!

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

A picture of the New Resort!

A picture of the New Resort!


Behold, the NEW RESORT.

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

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

Here’s what I had done:

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

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

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

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

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

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

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

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


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

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

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

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

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

(here’s grandma)

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

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

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OK so lots of parties.

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

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

So, yeah. Why.

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

ANYWAY.

Eventually I will adjust to these things.

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

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

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

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

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

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


Seven Quick Takes--Doctor Week

7 Quick Takes, transplant, healthEmily DeArdo6 Comments
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OK so, this isn’t really going to be a quick takes, I don’t think, it’s really going to be more of a “this is what happened in Emily’s world!” this week. :)


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MONDAY

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

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

Not fun.

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


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Time to visit my ENT!

While in the waiting room, I snapped this picture!

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

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

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

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

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

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

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

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

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