How to be your own health care advocate

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

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

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

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

Know your baseline.

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

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

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

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

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

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

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

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

All drugs have side effects

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You have to know your medical history

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

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

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

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

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

And finally….

Be aware of change

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

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

Seven Quick Takes--the 60th of September

Linking up with Kelly!

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In case you missed it, here’s what’s been going down around these parts this week:

Simplicity Series #1—Reset Day!

Stitch Fix Box #8!

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The reason this post is entitled the 60th of September is because this month has seemed insanely long. Isn’t there a song called “Wake Me Up When September Ends?” That’s how I feel right now. It’s just been so long. And sort of crazy.

One of the big crazy-making things is that I’m in the middle of Doctor Roulette, which I really haven’t written about here, so I probably need to catch you up.

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(If you’re not interested in medical stuff, skip this and go to point four, where I talk about BOOK THINGS!)

So, being post-transplant, and being fourteen years out, is….interesting. Obviously, I am INSANELY GRATEFUL to be at that marker. I am. Never think I’m not. But at the same time, it’s a Brave New World of Medical Stuff, because it’s rare. So when things happen, there’s not a lot of research to go on. There’s just…..talking. And guessing. And seeing what works.

Essentially, all summer we have been messing with insulin, because my blood glucose levels have been off. (I”m trying to keep this as medical jargon free, but when I say this, what I mean is my A1c, not my BGLs. If you’re confused, I can explain in another post, so let me know if you want that much detail into my life!)

So my team decided to put me on some long-acting insulin.

But……that didn’t work. First, it didn’t lower my BGLs, which I was testing twice a day, and second, insulin is a hormone. That means it can affect lots of parts of your body.

For me, that meant—headaches. Not sleeping. Weight gain (DAMN IT), and insanely inappropriate mood reactions. If Big Ben threw an interception I wanted to break things. If someone parked next to me at the supermarket, I became incandescently angry.

This is not appropriate.

And the scariest part for me? Forgetting things. Words. Ideas. What I was doing. This is not good. I rely on my brain, and words are my trade. I can’t be forgetting them! I need to be mentally sharp.

(But you’re never mentally sharp, Emily, says the peanut gallery….)

I did some digging and found out that when you have too much insulin—as in, you have WAY too much, and your body doesn’t need it—this is what happens.

And this is the problem. My body is weird. Not just the transplant weird, but weird for a CF person. I’m what’s called “pancreatically sufficient”, which is rare. It means my pancreas works like a normal person’s, not like a CF person’s. I don’t need to take enzymes to help digest my food, because my pancreas does it. I never had CF related diabetes.

And my A1c starting rising once I hit menopause—so there’s probably a connection there as well.

So, long story short, my team is sort of confused, and I’m seeing an endocrinologist the day before Halloween. That’s one reason I haven’t been writing as much this month, because things have just been crazy, but also my body has been through a lot, and I’m trying to be nice to it. Which means, chilling out, after all the non chilling out. :-P

There are some other issues, too, mainly that I don’t have a great track record when seeing endos, because they look at me and go, you’re really messed up, what do you want me to do about it?

But anyway, that’s at the end of October. Yay.

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in the meantime!

BOOK THINGS!

People are starting to ask for interviews, which is….weird. I mean, good, but weird.

The cover is 99% done. I’ve seen it. I can’t show you yet. If you want to be the first to see it, subscribe to the blog!

It’s really pretty, I like it. :)

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Hockey season starts soon and this makes me very happy!

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I am going on retreat next week, so if you have prayer requests, I am honored to take them with me! Drop them in the combox, or use the contact page.

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If you haven’t seen the Word on Fire team’s newest entries in their Pivotal Players series—Fulton Sheen and Flannery O’Connor—I highly recommend them! They’re great! Flannery is a really important influence for me, in how to live as a Catholic and a writer, and I write this quote from her at the beginning of all my journals:

I feel that if I were not a Catholic, I would have no reason to write, no reason to see, no reason ever to feel horrified or even enjoy anything. I am a born Catholic, went to Catholic school in my early years, and have never left or wanted to leave the Church. I have never had the sense that being a Catholic is a limit to the freedom of the writer, but just the reverse. … I feel myself that being a Catholic has saved me a couple of thousand years in learning to write. (The Habit of Being *)

So I love the Flannery film. It was also nice to learn more about soon to be Blessed Fulton Sheen—I had read some of his books, and I knew of him, but the film does a great job fleshing out what I knew.

(Also, in a nice twist, a college friend of mine composed the music for both films. Go Sean!)

And I really don’t think we can improve on Fulton and Flannery, do you? :) Have a great weekend!

*==Amazon Affiliate Link

Doing The Best You Can With What You Have

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

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

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

And the answer is, probably not.

So I thought I’d write about this.

*

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

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

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

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

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

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

Which saved my life.

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

*

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

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

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

But—what were my choices?

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

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

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

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

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

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

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

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

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

Trust, Courage, Faith, and Transplants

I had a holy hour last week before Mass, and as I was paging through my Magnificat, I noticed a few things.

Do you see them, too?

Matthew 9:1-8

The Healing of a Paralytic. He entered a boat, made the crossing, and came into his own town. And there people brought to him a paralytic lying on a stretcher. When Jesus saw their faith, he said to the paralytic, “Courage, child, your sins are forgiven.” At that, some of the scribes said to themselves, “This man is blaspheming.” Jesus knew what they were thinking, and said, “Why do you harbor evil thoughts? Which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk’? But that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic, “Rise, pick up your stretcher, and go home.” He rose and went home. When the crowds saw this they were struck with awe and glorified God who had given such authority to human beings.

And here….

Matthew 9:18-26

The Official’s Daughter and the Woman with a Hemorrhage. While he was saying these things to them, an official came forward, knelt down before him, and said, “My daughter has just died. But come, lay your hand on her, and she will live.” Jesus rose and followed him, and so did his disciples.  A woman suffering hemorrhages for twelve years came up behind him and touched the tassel on his cloak.  She said to herself, “If only I can touch his cloak, I shall be cured.”  Jesus turned around and saw her, and said, “Courage, daughter! Your faith has saved you.” And from that hour the woman was cured.

 When Jesus arrived at the official’s house and saw the flute players and the crowd who were making a commotion,  he said, “Go away! The girl is not dead but sleeping.” And they ridiculed him. When the crowd was put out, he came and took her by the hand, and the little girl arose.  And news of this spread throughout all that land.

Do you see it?

Before Jesus heals these people, he tells them to have courage.

A lot of people tell me I am brave.

I am not brave.

Doing what you have to do to keep on breathing is not brave. It’s necessary. Now, granted, I had to make the choice to go for transplant. If I hadn’t done that, then I wouldn’t be sitting here, writing this, precisely fourteen years later. In fact, as I write this (at 10:47 a.m.), fourteen years ago, I was in the OR. My surgery began around 6:45 in the morning (at least that’s when the epidural started, I think). So, yes, I made the decision to go for transplant. Was that brave? I don’t know. I don’t personally think so.

Really, though, a lot of the time, I did not feel brave. I did not have the courage Jesus is telling these people to have.

But as I looked at these verses, I thought, this is right. They need courage for what’s about to happen. Because it’s scary, to be suddenly plunged into a world you didn’t think was possible, something you had hoped for, but didn’t think would actually happen. It’s sort of terrifying.

These people had faith that Jesus could cure them. And I had faith, too. I’ve always had it. I’ve never doubted my faith. But did I have courage? Did I trust Jesus?

Ah. That’s the slow growing bloom of faith. Faith is the seed. But courage and trust? That’s later. That’s a result. It’s the result of a lot of dark nights and lots of tears and feelings of this is never going to happen.

And I can say that even if I hadn’t been transplanted. Remember, God is always good. I would’ve been cured, either in heaven, or here on earth. And I was lucky that I got my miracle here. Some people aren’t as lucky as I was. That’s the sobering fact.

Throughout, though, Jesus tells us to have courage, because something is happening. And it might be something great. But in the moment, there is fear. There is death, as we see with the little girl. But then…

life.

Even if it’s life on the other side of death. We know how this story ends. We know that death is not the winner.

Trust in Jesus sounds great, and it is great, but until you’ve really had to surrender your will, to say I have no control over this—that’s when you need the courage. It takes courage to trust in God.

Jesus knew that. And I think that’s why he tells these people to have it, to grasp it, to be strong in the moment. Because in the moment when the miracle happens, you might feel like you’re going to drown—save me, Lord, I’m perishing!

If I look brave, it’s really because Jesus gives me the courage to take the steps forward. It’s not my courage at all. It’s his.

My Dominican saint is Bl. Lucy of Narni—and yes, she’s the one C.S. Lewis used as inspiration for both the name “Narnia” and Lucy Pevensie. I’ve always loved Lucy. But remember, Aslan tells Lucy, “Courage, dear heart.”

We need to be reminded to have courage, to keep trusting.

Day In the Life: Yearly Transplant Testing

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

6:30 am: Alarm goes off.

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

It’s not raining! Yay!

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

Excellent parking!

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

7:50: Heading to Crossroads Registration

dooooown the long hallways.

I passed this bunny on the way in:

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

Up we go!

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

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

It does, however, have a good vending machine.

Anyway!

8:00 Infusion

In the waiting room—Muppet Babies on TV.

Great view, huh?

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

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

My great nurse comes in and sets things up….

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

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

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

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

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

Hallway out to the waiting room.

Doooown we go.

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

(Bunnies ahead!)

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

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

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

8:40 AM: Chest X-ray

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

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

(Yes. There are two gift shops)

Sharkbait!

Past the coffee bar….

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

9:00 AM: Clinic

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

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

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

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

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

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

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

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

Finally, Pulmonary Function Tests, aka, PFTs.

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

You then get results that look like this:

swirly bit is blocked out personal info. :)

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

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

11:00 Finished clinic, back to radiology!

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

past the fish….

And back to radiology.

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

FINALLY, the LAST TEST!

11:45 am: Chest CT

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

And into the CT room:

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

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

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

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

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

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

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

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

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

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

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

So, yeah, it’s a lot.

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

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

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

Because that doesn’t exist.

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

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

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

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

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

(Not too much freedom. But enough freedom.)

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

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

But here’s what it comes down to:

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

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

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

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

Go live your life!

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

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

Seriously. Do what the sign says.

Live your life. Take your brain with you.

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

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

Seven Quick Takes--Stories from the Loony Bin

Linking up with Kelly!

I’ve been wanting to write this post for awhile. Today’s a good day to do it, because this week, New York State passed the most incredible abortion “rights” law—a baby can be aborted essentially any time up to birth. If the mother wants that to happen.

Any time. We’re not talking about babies that aren’t viable here. We’re talking about babies that could be a week away from delivery.

(And be sure to read that post for the definition of “health of the mother” that the law used. It’s….interesting.)

Anyway. I am mad about this, of course. But at the same time, I feel like I need to write something funny to counteract this insanity that caused the state of New York to light up One World Trade Center pink to “celebrate” this law passing.

Look, my life hasn’t been a picnic. But at the same time, sometimes plain funny things have happened because of it. So, I present, tales from the loony bin.

(c) Erica Kay Photography. This year’s Christmas card photo. L-R: Me, my mom, Sarah (new SIL) , Bryan (my brother), Dad, Melanie (my sister), Jason (her fiance)

(Just a note before we start: some of the medical technology has changed. So you know, don’t go that’s not how these things work!)

-1-

Back in the day, I did a lot of home IVs. Basically, it’s IV meds you give at home, so I didn’t have to be stuck in the hospital for 2-3 weeks and could go to school and have a life. But that also meant that sometimes, there was a learning curve.

IVs have to be kept sterile—you can’t get them wet, you have to protect them. Now, when I first did home IVs, I would climb trees with an IV, but you know, I was young! :)
Anyway one time, the cap—the thing that protects the end of the IV line—got stuck. We couldn’t get it unattached, and this was bad, because then we couldn’t give the meds I needed.

So dad decided the best way to fix this was….with a pair of pliers. From his tool box. Grimy, gritty, dirty pliers. On a sterile IV line.

He came into my room with the pliers and I backed myself into a corner like a freaked out animal. “GET AWAY FROM ME!”
”What? We have to get the cap off!”
”At least clean them first! Use the alcohol wipes!”
(Fortunately, we could replace the tubing bit. We didn’t have to resort to the pliers.)

—2—

The night before my algebra II final my junior year, I woke up in the middle of the night. No, not because of Law of Cosine nightmares. I felt something wet.
I rolled over and saw that the sleeve of the t-shirt I slept in was bloody. Like, soaking with blood.

At the time, I had a PICC line in (peripherally inserted central catheter—basically a line that wasn’t under my skin, like my port is now, but went into a deep vein, so if we had problems with this, they became large problems.)

I ran into mom and dad’s room. “I’m bleeding.” Mom grabbed a towel and we went back to my room, applying pressure. Dad stumbled in with the cordless phone (this was 1999).

We called the direct line to Children’s and were put on hold while we waited for someone to answer our question. Were we going to have to go to the hospital? Was this really bad?

It’s around 2 AM, the lights are on in the hallway, and my brother and sister are standing in the doorway. Mom and Dad are arguing—what should we do? Should we do this? Should we do that?

At some point, Mom calls my dad something not nice.

And then we hear, “hello?”

We hadn’t muted the phone. The person on the other end had heard the entire argument.

—3—

Sometimes, though, it was a little funnier. Like the time Mel and I decided to use unused saline (salt water) syringes as squirt guns and pelt my brother with them. “Stop it! You’re going to kill me! What is that stuff?!”

“It’s water.”

“Oh.”

—4—

You know that you’ve passed the point of a normal family when going to the ER in the middle of the Super Bowl—which your favorite team is in—isn’t really cause for angst. The Steelers were playing the Packers in Super Bowl 45, and I started to get the lovely feeling of heart arrythmia.

“We have to go to the hospital,” I told my mom during the first quarter.

At halftime, we went. We went to the special area of the ER, doctors buzzing around me, the normal stuff happening. Dad is on his phone checking the score.

“We’re going to lose,” he mutters from the corner.

We did lose. But we got to watch the Puppy Bowl in the ICU!

—5—

Right before my transplant, my doctors were pulling every medical rabbit out of the hat to keep me alive. We were trying every drug we could think of, anything to keep me stable. Forget about improvement, we just didn’t want to get worse.
One of those drugs (another IV med) had to be constituted by us, meaning that it came as a powder, and we had to add the saline. This was rather difficult for some reason, because the force needed to get the saline out of the bottle, into the syringe, and then the saline IN to the med, was quite a bit. WE had jerry rigged some contraption onto the kitchen cabinets to try to give my dad and brother more leverage, because they were the only ones that could do this.

So I came home from work (granted, work was mostly just sitting at my desk—I really couldn’t do a whole lot at this point) and find my brother mixing the 3:00 med dose. I put down my bag

CRASSSSSHHHHH!!!!! SHATTER!!!!!!!!!

I look up. Bryan is holding the syringe, dumbfounded. The glass bottle had exploded all over the floor from the force of the saline trying to go into it.

All I could do was laugh.

—6—

This one has entered family lore:

I had pancreatitis—well, I had pancreatitis a lot. It wasn’t one of those things where I had to get to the ER toute de suite, but I was in a lot of pain.
Dad and I were in the car and stopped at the stoplight at the end of our road. One car was in front of us. We wanted to turn right, but this guy either wanted to go straight or was waiting for an invitation to turn (you know those people).

Dad revs the engine, and jumps the curb. Seriously. Drove the car right over the curb, scraping the bottom of the Accord, a tremendous nails on the blackboard sound.

Now whenever we’re behind someone in that situation, I always tell dad that he can feel free to jump the curb.

—7—

OK this last story is me.

The Resort (my normal hospital) is a teaching hospital. So sometimes when you get admitted from the ER, you have to go through the special hell of having some resident take your history. I don’t know what this resident had done to get me, but whatever. Poor guy.

Anyway, I was tired, I was drugged up, and I really didn’t want to be doing this. Plus, when I’m sick, my hearing goes out the window. I can’t concentrate. So I was just nodded and “yup”ing and all sorts of things to get this guy out of here.

Dad, of course, couldn’t be present for this because you know, I might talk about sex. So he was in the hall with his free coffee.

The medical student asked me a question. I said, yup. He said, how often. I said, oh, twice a day. I mean, I thought he was asking about meds.

He looks at me, shocked. Deer in the headlights.

“I’m sorry, what did you ask me?”

He turns bright red and mutters, “I was asking if you were sexually active.”

OH.

“Well, then, um, nope. Sorry. Never. Wow. Yeah.”

I figure that’s a good way to end, don’t you? :)

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

(c) Erica Kay Photography

and some theology

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

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

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

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

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

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

Because it doesn’t work that way.

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

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

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

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

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

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

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

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

He always loves you, too. No matter what.

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

—John 9: 1-3, NABRE

Thirty-six or sixty-six?

AKA: I’m getting too old for this. :-p

So for the last two weeks I’ve been on levaquin, a drug that my docs use to help with any infections I get—sinus infections, lung infections, etc. It’s our first line drug. But it’s not most people’s first line drug, because…they’re normal. :)

Me being me, I already take a fair amount of prophylactic (aka: drugs to keep me from getting sick) antibiotics. Since I’m always on those, when I do get an infection (which last happened during 2016), I have to go for harder core meds. It’s either cipro (which treats anthrax! Yay!), or levaquin.

These are in a class of drugs with a reaaaallly long name, but they have some fun side effects. (sarcasm font!) Cipro messes with my stomach; levaquin messes with my sleep. So when my ENT prescribed levaquin after seeing the start of a sinus infection, I resigned myself to alternating between Zzzquill and Tylenol PM for the next two weeks.

Well, this time, and in the “I’m getting too old for this” category, I’m having issues with my tendons, which is also a side effect of these meds. This is better than joint issues in one area only it isn’t nearly as painful. However, it is annoying because I don’t know how far I can force my body to go without a tendon rupturing (which does NOT sound fun). So far, my left knee, my right elbow, and my right wrist have been the most affected. Essentially, they’re just really sore, and I can’t do much. I can’t knit, which is driving me crazy, and it’s even hard for me to hold books, so I’m reading on my iPad (which thankfully I have). I’m essentially a lump on the couch.

Now, this irritates me to no end, because I do not LIKE being a lump. And I can’t even SLEEP or nap, because of the insomnia side effect. Grrrrrrrrrrrr.

Anyway, getting too old for this. :-P But at least my sinuses are better! And I’m getting to read a lot of Harry Potter.

More skin cancers!

As I’ve written about before, I’m really susceptible to skin cancer. Not just because I’m fair, but because of the meds I’m on. The anti-rejection meds I take make me 10 times more likely than the general population to get skin cancer. So even though I am vigilant about sunscreen, and always have been, now I have to be even more vigilant.

Unfortunately, I can’t stop taking the meds. And I can’t—or won’t—live in a burqa. So, that means that no matter how vigilant I am, I’m going to get more. Most likely. But, upped prevention also works; when I swim, I cover my hair with one of these, and so far, my scalp hasn’t had any issues again. (Make sure you find the one with SPF in the fabric!)

It’s cute, right? Right? :-p

The two I have at the moment are, thankfully, easy to treat. One of them is on my tricep, and it’s superficial, so we’re treating it with a special cream. It’s twice a day, for twenty one days, so it’s not a bad course, especially not compared to the IV courses I’ve done that are that long (or longer). I don’t have an IV in, and I’m free to bathe when I want. :) So this is cake.

The second one is on my right ear, on the top curve. FORTUNATELY this is also pretty superficial, so we’re just going to scrape it and laser it off. This is easy, but it does require a lot of waiting room time, because you have to wait three hours between scrape and laser. So, that means books to read!

But enough about me—let’s talk about you. Please, if you haven’t, go to a dermatologist and get a full body check. If you’re a normal person you probably only need to do this yearly. But please do it. The grandfather of a dear friend has skin cancer and it’s metastasized. Skin cancer kills people.

Wear sunscreen. Cover up. Get your skin checked. For the love of God, do not lay out! It’s terrible for your skin, and your vanity. ;-) You want to look younger longer? Don’t tan.

So, that’s this week’s medical adventure.

#10 I didn't die at barre class

Seriously, people, this is worth sharing.
I hadn’t been to a Pure Barre class in about four years. And when I went, I would get so frustrated, constantly comparing my body to the other bodies in the room. Why couldn’t I do this? So, of course, I stopped going after about 10 classes.

But last night, I had this strange compulsion. I was going to a Board and Brush class with my SIL and my brother. There was a Pure Barre studio right by the class and their apartment. I could….go to class and then meet them for dinner and then paint.

I signed up for a class, my first in almost five years.

What in the world?!??!

Before I went in today, I gave myself a pep talk. Emily. You cannot compare your body to theirs. You have maybe half the lung capacity. You have a wrist that hates plank. But you know what? You are strong anyway. You can modify. Just get through the class.

So that was my goal. Get through class.

And I did. And not only that? I’m stronger than I was five years ago. I could get through the warm up and arms almost easily. I could do leg work without feeling like a failure. Sure, at the end, when we did crunches with legs in the air, I couldn’t do that. But you know what? THAT IS OK.

I left class feeling really proud of myself, and energized, and amazed that I felt stronger than I had when I was younger.

This is really different for me. I used to leave class frustrated and angry at myself, or at the very least, with a “got that done” mindset.

Maybe….I need to go more often?

Maybe my body can do things?

And board and brush was awesome. Here’s what I made:

AND I got to have fun with Liz and her cat Vito and knit and talk books and have tea this morning

So basically, a great day.

What people say

Roses outside the parish priory

I was reading one of Nie Nie's recent posts, and it got me thinking. 

Like her, meeting new people can make me nervous. There's a lot to explain. If I go out to eat with a good friend, they know my "I don't understand please translate" look I give when the waitress is talking. New people don't.  My friends know that if I miss something or mishear it, that I didn't mean to do it, and they'll correct me and we'll move on. New people don't know these things. 

New people also don't know why my arm is scarred up. Like Nie, I was burned--not nearly as badly, thank God. But, people ask about it. It's not "normal."

Some people think that "nice people" don't ask rude questions. They do. 

I was asked to show someone my transplant scars in the middle of an office. They're underneath my breasts. Not happening. 

I've been asked what happened to my arm when I'm buying moisturizer and toilet paper at Walgreen's. Recently, a checkout clerk asked me what happened to it as I was digging out my wallet. 

"I was burned during surgery." That's all I wanted to say. People are not owed my whole story just because they're curious. 

But this woman wouldn't stop. "What hospital was that at?"

I didn't answer. I slipped my card into the reader. Fortunately, by this point, there was a woman behind me. The employee continued chattering at me as I finished my transaction. 

Why do people do this? Because they're curious? They probably don't mean to be rude, but they certainly didn't think before the words left their mouths. 

I don't mind little kids asking me, because they really don't know better. Adults do. 

You're not entitled to know everyone's story. My life and its intimacies aren't your personal fodder. It's like touching a pregnant woman's stomach. That's just wrong, man. It's not yours to touch. 

I write here. I talk about my life. I want to do that. But that doesn't mean that when I'm buying toilet paper I want to go into the details of transplant and skin grafts with you. And honestly, people aren't owed that information. 

People can be crazy rude. And it hammers home the point that, yes, my arm looks weird. But if you want to talk to someone you don't know, compliment them? Say they have great eyeliner or their shoes are a fun color or something. Don't say, hey, why is your arm funny? Why are you in the wheelchair? Why don't you have any hair? 

I don't mind talking about it, but I don't like it being pointed out like it's some sort of freakish wonder. There's a difference. 

Thirteen

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

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

My brother got married

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

My sister got engaged

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

I saw the Stanley Cup with my parents

I went back to Williamsburg and Duck 

I started writing and editing for Take Up & Read. 

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

I knit my first shawl. 

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

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

I would've missed my brother's wedding. 

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

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

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

I try not to think about that. 

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

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

And that about sums it up. 

Thirteen years of overcoming is pretty good. 

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

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

The Big Bad Wolf

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You are not running the world.

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

But you have to be vulnerable and tell people that.

And that is hard.

I know it’s hard.

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

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

We need to bring this stuff out into the open.

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

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

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

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

So, here we are.

I’m writing about it.

And I hope that this helps someone, even marginally.

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

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

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

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

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

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

But it’s worth it.

Save Lives--Be an Organ and Tissue Donor!

So, just about all of you here know that I am alive because of a double-lung transplant.  Obviously, organ transplantation is something I feel very strongly about. 

Today is National Blue and Green Day, a day within Donate Life Month (which April is) where we really focus on bringing awareness and attention to the need for organ donors. And there is great, great need. 

There are 115,000 people currently on the waiting list for an organ or tissue transplant. When I was listed in 2005, that number was in the high 90Ks. In 13 years, it has ballooned. To give you a visual: 

This is "The Shoe"--Ohio Stadium at OSU. It holds about 104,000 people. 

The national registry has about 10,000 more people on it than are seen in this photo. 

Imagine that for a second. 

That's more than the entire town of Burbank, CA; Cambridge, Mass.; or Charleston, SC. 

Now--of these people, twenty-two of them die every day, waiting for a donor that never comes. 

Imagine those people are your parents; your siblings; your cousins or aunts or uncles or grandparents. Your best friend. Your pastor or favorite teacher. 

And we can do something about that: by getting more people to be organ donors. 

Being a donor is totally free. It costs nothing to you or your family. It's very easy to sign up. 

You can do it here!

I'm alive because a woman named Suzanne decided to donate her organs. She helped me and at least two other people. She saved my life. 

Please register, so you can save someone else's life. 

Stop waiting around

Trivia night victors! 

Guys. Stop waiting to do things. 
I see this a lot with transplant people--or people with CF--but also with people who are just nice, normal people. 
"Oh, I'll wait until later to do that."
"Oh, someday...."
"Oh, it's just not right right now."
Guys. 
If you want to go to school, go. 
If you want to learn something, learn it.
If you want to bake cookies all day, do it at least once.
If you want to learn Spanish, sign up for Duolingo. 
STOP WAITING.
Stop saying, Oh, when this happens. 
Nuh uh. 
DO IT NOW.
Yeah, sometimes it's not plausible. I get that. Sometimes you have to save money. I get that too. 
But then DO IT. Save the money. Make it happen. Dedicate yourself to it. 
Don't wait. 
Don't use your body as an excuse not to do things. "Oh, I have crappy lung function, I can't go to school, I can't work, I can't do anything by lie here and watch Netflix."
I've been there. Before my transplant, I slept for 13 hours a day. Seriously. If not more. When I was "awake", I was sort of zombie-fied. And that's what happens when you're close to death. 
But EVEN THEN--I went to work. I went out. I saw my family and friends.
Yes, when life changes, more opportunities can open up. 
But you will lose your life waiting around for things to happen. 
So STOP IT. 
Learn the things. Do the things. LIVE YOUR LIFE. Even if you're almost dead, you can STILL LIVE YOUR LIFE while you have it.

I am not brave

Let's just get this out of the way. 

I am not brave. 

I am not courageous. 

I am definitely not a saint. 

Yet, people call me, and people like me, these things. 

This makes me really uncomfortable. 

Having CF, and having a transplant, do not make me brave. 

Are you brave when you get up, get dressed, have your breakfast, and go to work? When you do the dishes and get the mail and pay the bills? No. You're living your life and being responsible. 

When I did my treatments, took my enzymes, went to clinic, did IV meds...that was my life. When I take my meds in the morning, when I go to clinic now, that's my life. That's completely normal to me. It's not brave. It's not courageous. 

Deciding to have a transplant? It was just deciding to live my life, to do what I needed to do to extend it. I wasn't afraid of dying on the table, because I knew without the surgery, I'd die anyway. So, choosing transplant wasn't brave. It was pragmatic. 

Going to college? Getting my degree? Working? Again, no brave. Not courageous. Living my life. That's all.

When I see stories about how "Brave" people like me are, because we live with illness, I want to scream. It's not brave. It's just doing what you have to do with the hand you're dealt. What would you do? Curl up in a ball and refuse to leave your room? Refuse to do treatments? I guess. I knew CF people who did. 

Bravery and courage are not what I have. I hated selling Girl Scout cookies. I'm not brave. I won't sky dive or even do a high-ropes course. I'm NOT A SAINT. I just am. I live my life the way all the rest of you do. This morning, I took my pills with my coffee. I've been taking pills with my breakfast since I was about two years old. It's not out of the ordinary. It's not brave. I'm not brave when I "let" people stick me multiple times to get an IV in. That's not bravery. That's what I have to do. What's my other option? 

My parents are brave. They hold it together when everything is threatening to fly apart. I am not brave. I'm just doggedly stubborn. 

Brave people are the people who rushed into the World Trade Centers on 9/11 to save the people inside, knowing they would probably die.  Navy SEALs are brave people. Soldiers, firemen, nurses, first responders--they're brave. I don't put my life on the line. I don't do anything to save other people. 

So please don't call me brave. I'm not. 

********************************************

(Catholic 101 is now available! Pick up your copy here: https://gum.co/RMkqu) 

Twelve Years, and a Celebratory Pork Chop

Me as an intrepid toddler. 

Twelve years is a substantial amount of time, if you think about it. It's your entire education from first to twelfth grades. It's an entire pro sports career, if the player is lucky. Ad it's how long I've been alive with another person's lungs inside me. 

It's insanely lucky. It really is. When I consider the people who don't get listed, who don't get the call, and then who don't survive past five years (which more than half of female lung recipients don't)....it's amazing to be so gosh-darn lucky. It's miraculous, really. 

So I thought it would be appropriate to share a good bit of food with you. Before transplant, I hated food. I liked cooking and baking, but I really didn't like eating much of it. Post, I loved it. The entire world of food opened up to me. 

Just recently I've been working on tempering the two--eating what's good for me, in good portions, and not going overboard on the stuff that's delicious but not so healthy. I'm seeing results on a lot of levels, which is exciting, but I'm also learning how to embrace cooking really great food that's also not terrible for me. Thus, this pork chop recipe. 

You can eat it just as it is, or serve it with some buttered leeks. 

Here's to more celebratory pork chops. 

Celebratory Pork Chop

This is the best pork chop you will ever have. I guarantee it. 

Start with two thick pork chops, about an inch. Don't trim the fat off. Season with with kosher salt and fresh ground pepper. 

Preheat the oven to 375. Drag out your oven proof skillet (cast iron is great). Heat it over medium high heat, and add olive oil to it. When the pan is hot, add the chops. Cook for three minutes on each side, then throw the whole thing, pan and chops, into the preheated oven for 30 minutes. Remove the pan and put the chops on a plate to rest for four minutes. 

Make a pan sauce--in the hot pan, add 1/2 cup water or stock, let it reduce a bit. Add 2 teaspoons dijon mustard and a good knob of butter--about a tablespoon, but whatever odd pieces you have in the fridge. Whisk together. Serve the chop with the pan sauce. 

Enjoy deliciousness. 

(Also, are you an organ donor? Please be one. When I was first listed, 18 people died every day waiting. That number is now 22 people, and the national list stands at 118,000 people who are waiting for new organs.  Sign up here. ) 

Giveaway: A copy of "Cultivate"!

In honor of my twelve year transplant anniversary, which is tomorrow (holy cow, that sounds amazing to write--incredible to believe), I'm giving away a copy of Lara Casey's new book, Cultivate, which you've all heard me babble on about for months now. It's so good, folks. I'm so excited to share it with you! 

(You can read my review here, and my preview here)

What do you want to cultivate in your life? Share it in the comments! It can be anything, big or small! 

a Rafflecopter giveaway

Surgery update!

Part...I have no idea. Three, maybe? 

So just to recap: had stitches in my head. (Wear sunscreen!) Had a follow-up two weeks ago, where the doctor checked out the healing. It's progressing well, but he wanted to keep the stitches in for a little longer. 

Today, I had my second follow-up and the stitches are out! 

Yayyyy!

So now I just have to apply vaseline once a day and I can't totally submerge my head in the pool--but I generally don't do that anyway. 

Happiness!