Doing The Best You Can With What You Have

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

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

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

And the answer is, probably not.

So I thought I’d write about this.

*

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

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

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

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

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

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

Which saved my life.

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

*

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

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

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

But—what were my choices?

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

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

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

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

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

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

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

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

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

Day In the Life: Yearly Transplant Testing

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

6:30 am: Alarm goes off.

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

It’s not raining! Yay!

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

Excellent parking!

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

7:50: Heading to Crossroads Registration

dooooown the long hallways.

I passed this bunny on the way in:

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

Up we go!

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

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

It does, however, have a good vending machine.

Anyway!

8:00 Infusion

In the waiting room—Muppet Babies on TV.

Great view, huh?

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

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

My great nurse comes in and sets things up….

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

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

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

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

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

Hallway out to the waiting room.

Doooown we go.

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

(Bunnies ahead!)

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

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

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

8:40 AM: Chest X-ray

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

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

(Yes. There are two gift shops)

Sharkbait!

Past the coffee bar….

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

9:00 AM: Clinic

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

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

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

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

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

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

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

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

Finally, Pulmonary Function Tests, aka, PFTs.

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

You then get results that look like this:

swirly bit is blocked out personal info. :)

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

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

11:00 Finished clinic, back to radiology!

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

past the fish….

And back to radiology.

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

FINALLY, the LAST TEST!

11:45 am: Chest CT

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

And into the CT room:

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

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

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

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

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

Seven Quick Takes--You Are Not a Mistake

Linking up with Kelly!

-1-

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

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

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

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

You deserve to be here.

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

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

—II—

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

-III-

Remember Pope Benedict:

-IV-

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

Because, seriously, folks. Seriously.

-V-

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

-VI-

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

-VII-

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

You are not a mistake.

via GIPHY

You Can't "Snap Out Of" Depression...

“Irises”, Vincent Van Gogh (I saw this at the Getty when I visited in 2016.)

There are few things that make me as angry as willful ignorance.

I can understand people not understanding things about CF, or my hearing loss, or transplant, or whatever. They’re pretty rare things. There’s a learning curve.

What I cannot tolerate, or understand, is how, in the twenty-first century, people still think that you can “snap out” of depression, and that you just need to “be positive”, and that if you have depression, you’re just “giving up.”

And yes, those words in quotes? All things I heard over the weekend during a discussion about this on social media.

So, for anyone who believes that those things are true, some education:

1. Depression isn’t the same as a bad day or a bad mood.

   Everyone has bad days. When I’m having a bad day, I say I’m being “Grumpy Cat.” If it’s a really bad day, then I’m “Grumpy Cat Deluxe.” But both those things are totally different from depression. Depression lasts. Depression doesn’t go away with a good night’s sleep, or watching a good movie, or working out, or going out to dinner with friends. Things that work to get you out of bad moods do not work for depression. They might help. But they won’t solve the issue. That’s because…

2. Depression is a mood disorder that affects your brain chemistry.

   The Mayo Clinic says:

   “It's not known exactly what causes depression. As with many mental disorders, a variety of factors may be involved, such as:

   • Biological differences. People with depression appear to have physical changes in their brains. The significance of these changes is still uncertain, but may eventually help pinpoint causes.

   • Brain chemistry. Neurotransmitters are naturally occurring brain chemicals that likely play a role in depression. Recent research indicates that changes in the function and effect of these neurotransmitters and how they interact with neurocircuits involved in maintaining mood stability may play a significant role in depression and its treatment.

   • Hormones. Changes in the body's balance of hormones may be involved in causing or triggering depression. Hormone changes can result with pregnancy and during the weeks or months after delivery (postpartum) and from thyroid problems, menopause or a number of other conditions.

   • Inherited traits. Depression is more common in people whose blood relatives also have this condition. Researchers are trying to find genes that may be involved in causing depression.”

Did you get all that? Changes in the brain. Hormones. Inherited traits. Brain chemistry. These are not things that just “go away” because you want to “snap out of it.”

And also, they do not go away “if you pray”, and you’re not depressed “because you don’t pray enough.”

via GIPHY

Let’s sum this up really fast. :

Depression is not something that you can snap out of. It’s an illness, just the same as cancer or CF. People with depression need help from doctors, including psychiatrists/psychologists, and this help might include taking medication.

Do not tell people to “snap out of it.” You wouldn’t tell someone with cancer to do that. Don’t do it with someone who has depression.

Depression is not rational.

Feelings are not rational.

If some one tells you not to be depressed because you’re alive, or you have a good job, or a good family, or a nice house, or whatever…..that person does not understand depression. DEPRESSION IS NOT RATIONAL.

If you want a funnier—but entirely true—take on this, visit this post by Allie Brosh.
(Go read it and come back. Really. What follows will make more sense.)

I especially want to note the part about the fish.

Someone asks Ally, what’s wrong? She says, my fish are dead.

OK. Her fish are dead.

The person says to Ally, “Oh! That’s OK! I’ll help you find them!”

That’s not the problem she has. The problem isn’t that they’re gone as in missing. They’re gone as in dead.

No amount of positive thinking will bring the fish back to life.

Same with depression. No amount of being told “how good you have it” or “how happy you should be” will change your feelings! Because it doesn’t work that way!

Please, people.

Stop telling people with depression to snap out of it. Or that they shouldn’t be depressed. This is what leads to people not talking about depression, which makes the problem even bigger, and then it makes people feel like they should be ashamed of it! And they shouldn’t be!

If someone you know is depressed, please listen to them. Don’t tell them to snap out of it.

Seven Quick Takes--Colorado, Mother's Day, and Mammograms

Linking up with Kelly!

-1-

I was in Colorado last week (hence why no blog posting!) for my sister’s bachelorette weekend. I’d never been to Colorado before!

One of the floral butterflies in Downtown Denver

The Collegiate Peaks in Buena Vista

Mel and I at Mt. Princeton Hot Springs.

—II—

I’ll write more about Denver next week, but here’s what I learned, in short, about going to altitude:

Drink a lot of water. Like, insane amounts.
Bring saline nasal spray. My nose was SO dry!
Bring a portable charger, because altitude seems to drain phone batteries faster
SUNSCREEN. ALL THE SUNSCREEN.

—III—

Our trip included Denver (my sister lives in Littleton) and Buena Vista, where the cabin weekend was held. I didn’t realize it was sort of desert-y down there. I should’ve expected it, but some how, I didn’t. I had never been in that sort of environment before, so it was definitely a new experience. I learned that I like green!

—IV—
Anyway, more on CO next week. It’s been awhile since I’ve done some travel posts, so it’ll be fun!

—V—

Amy Welborn wrote a great piece about Mother’s Day and parishes, and I’d encourage you to read it.
Mother’s Day is, to put it nicely, fraught. I really don’t think it should be celebrated as part of the Mass. Mass is for the worship of God, not for the worship of ourselves. If parishes want to do something for mothers (or graduates, or whatever), then they can do it after Mass. Blessings, etc.? After Mass.

I know so many people who are struggling with infertility. I, myself, will never have children. Let’s also think about people who have lost their mothers, or have not-great relationships with their mothers, or have other issues with their moms. Let’s realize this. Sure, mothers are important! (Love you, Mom! :) )

But do we need to make it such a big part of the Mass?

Same thing with Father’s Day. And also, I don’t think we do Father’s day nearly as much as we do mother’s day.

Celebrate your mom, but parishes, please do this after Mass.

And for the love of the Lord, do not make people hug their mothers at Mass! (see the comments in the article for that one.)

(And yes, I love my mother. :) This isn’t about not loving Mom!)

—V—

And because it’s my blog, I’ll expound a little more. One of the comments at the bottom of Amy’s post was all about “celebrating” at Mass. Having visitors stand up, or graduates be recognized, or birthday people be recognized.

I got one word for this:

NOPE.

via GIPHY

People. Mass is not the time for this.

Mass is for THE WORSHIP OF GOD.

If you want to recognize birthdays, do it in a bulletin.

You want to recognize the grads? Have a reception in June after a Mass.

I CRINGE at the thought of making visitors stand up. I hate this. Why do you think a visitor would want to be recognized?! And what does that have to do with Mass? (This visitor never wants to be recognized. Ever. Just let me come to Mass.)

Yes, I realize I’m an old and cranky person here.

But I think it was Benedict XVI who said something like, if we’re applauding during Mass, we’ve completely lost the plot. (I’m paraphrasing, obviously)

Mass is not about us.

If you want to celebrate community things, that’s great. Do it after Mass.

—VI—

Well, that felt good. LOL. .

Writing of the book is going well. My next newsletter for subscribers should be sent out next week, so if you’re not a subscriber, do it now!

I’m 2/3 of the way done with the manuscript. This week has been some hard sledding but you know, the important thing is to get words on a page. So that’s been happening. You can edit words on a page. You can’t edit a blank one.

—VII—

I also had my first mammogram this week. My mom had breast cancer at age 47, so I had to get my baseline done 10 years before her diagnosis—hence, at 37. Since I turned 37 last month, it was time.

I was nervous about it—I’d heard horror stories about it hurting, especially with transplant scars (this might be TMI, but—for my transplant, the incisions are about where a bra underwire is).

But I had a great, careful tech, who made sure that nothing was pinching, and it wasn’t really bad at all. Yeah, the skin is being squished, but that didn’t really hurt.

Ladies—you need to get a mammogram at age 40. You might have to do it earlier, if you’re like me and have family history. Please, please, please check your own screening requirements and set this up.

(And finally, if you missed it, there was a yarn along on Wednesday!)

Listen Up! (For World Hearing Day)

(c) Wikipedia

World Hearing Day was yesterday, and so I thought I’d put up links to the post I wrote last year, about my CI and how it works and ways people can make hearing better for everyone!

So if you missed them the first time:

Part I: How I lost my hearing

Part II: How the Cochlear Implant Works

Part III: Living with a CI

Part IV: Accommodations, i.e., the post that you should read even if you don’t read any of the others!

I am (hopefully!) getting my CI upgraded in the next few months. The current processor I have has been “obsoleted”, meaning that if it breaks, Cochlear (the company who makes my processor) won’t fix it, they won’t sell any more replacement parts for it, etc. Now, they do this, in part, so that insurance companies will pay for new processors, because if it can’t be fixed anymore, then, yeah. Probably need an upgrade. This one should be better and allow me to hear more, but I have no idea until I get it. :) I do know that it will have bluetooth capability so it can stream my iPhone sound directly into my processor, and this might be a big thing. We’ll see what happens and I’ll let you know!

And thinking about my CI is timely because of a conversation I had in a lung transplant group on facebook. We were talking about the toxicity of a certain class of meds, and that they are crazy hard on the body. Some people were adamant that they would never take a drug in that class.

But here’s the thing—all meds are toxic at some point. They just are. Tylenol is! I knew that the ototoxic drugs were destroying my hearing. But I decided I’d rather be alive, than dead with great hearing. It’s about choices. And sometimes, yes, you just have to cut out a class of drugs. The meds I took over the fall for a sinus infection have pretty much messed up my right knee permanently. I’m not really happy about that. But you know, I like being alive, I like that we managed to stop the infection without it 1) getting into my lungs and 2) requiring the big guns of IV meds and /or hospitalization.

It’s a trade off.

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? :)

Seven Quick Takes

Linking up with Kelly!

—ONE—

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

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

—TWO—

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

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

—THREE—

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

—FOUR—

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

And you can help me!

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

—FIVE—

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

—SIX—

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

—SEVEN—

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

Burdens

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

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

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

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

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

“We want you,” my parents said.

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

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

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

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

• Monthly blood draws when I was a toddler.

• Driving to Cleveland in a snowstorm for an appointment.

• Many many many overnight hospital stays

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

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

• Many insurance phone calls

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

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

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

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

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

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

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

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

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

(c) Erica Kay Photography

and some theology

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

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

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

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

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

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

Because it doesn’t work that way.

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

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

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

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

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

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

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

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

He always loves you, too. No matter what.

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

—John 9: 1-3, NABRE

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.

Med-sanity II

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

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

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

WRONG.

A few examples:

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

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

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

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

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

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

OK. Done.

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

That last point is sort of an insult, frankly.

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

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

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

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

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

Which brings us to the big lesson, here:

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

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

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

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

Med-sanity!

Seriously, who would get mad at this guy?

One of the things I hate about mental health issues is that it’s so easy to freak out when you feel yourself starting to slide. It’s so gradual, that it can be just a few little things, and then suddenly you have a day like I had today, where if the World’s Cutest Corgis came into my yard, I would’ve flown into murderous rage.

Seriously.

I was so unhinged all day, and if I had to pinpoint it, it would’ve started on Sunday, when I go so angry at the Steelers that I was yelling and swearing and generally losing it. But today, when I wanted to bite the head off any human being I encountered, including my super sweet and wonderful boss, I started to think, waaaaait a minute…..

I ran through the regular triggers. I’d been sleeping amazingly. So that wasn’t it.

I had a Diet Coke, and some Earl Grey. If it was a caffeine/sugar issue, that would fix it. No go. (I put milk and sugar into my Earl Grey, for the record.)

I had some dark chocolate in the house and had a piece of “emergency chocolate.” Nope.

Wait a minute…..maybe it’s……the skin cancer med.

I looked up the side effects online, and there it was: mood disorders (anxiety, depression, etc.)

BINGO.

Now, just knowing that I’m not going crazy—literally—is very helpful.

But in the all and all, I’d rather have physical side effects, because then you can take something. Nausea? Vomiting? Phenergan! Pain? We got stuff for that! Can’t sleep! Meds!

This, nothing I can do except ride it out until Halloween when the course is finished.

I’m already on anti-anxiety meds (since I was 16), so….can’t do anything about that, and even if I wasn’t, it can take awhile for the meds to build up in the system, so it wouldn’t really help, most likely.

So, while the med is just a cream, apparently it’s tres potent, and after not even a week….oh well.

I can hang in there. It’s just nice to know I wasn’t entirely losing my mind. But I think I might hide in my hobbit hole for a few days so I don’t take the head off anyone who doesn’t use their turn signal. :-p

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.

"Even crazy people like to be asked"

Another thing that’s connected to depression is hearing loss.

Yup. Not making that up.

A study by the National Institute on Deafness and Other Communication Disorders (NIDCD) shows that more than 11 percent of those with hearing loss also had depression, as opposed to only 5 percent in the general population. Depression was most prevalent in those between the ages of 18 and 69.

“We found a significant association between hearing impairment and moderate to severe depression," said Dr. Chuan-Ming Li, a researcher at NIDCD and the author of the study. The study does not confirm the nature of the cause-and-effect of the connection.

 And this is very true. If people don’t include you in conversation, if they ignore your needs, then that is very frustrating and adds to depression, because you feel worthless and ignored. It doesn’t matter if people are really ignoring you or not--it’s the perception that’s important here. Depression isn’t logical.

 So if you have friends and family members who are hard or hearing or Deaf, please include them. Please ensure that they get what they need and help them with conversations. We’re not being difficult, really. We just want to know what’s going on! It’s exceedingly frustrating.

Imagine that you’re sitting at a table full of people--friends, family--and everyone is talking and happy around you. Now, imagine that, instead of hearing what they’re saying, you hear Charlie Brown’s teacher’s voice. Or screeching cats. That’s what it’s like. It’s noise.

Now imagine if you ask people what’s being discussed and people ignore your request for information. How would you feel?

You would feel very frustrated and very small. At least that’s how I feel.

Chronic illness, in general, has links to depression.

“Current research suggests that he relationship between depression and other medical illness is bidirectional. Depression increases a person’s risk for developing of number of medical illnesses and also worsens the prognosis of those medical illnesses; medical illnesses put a patient at higher risk of developing depression.” (The Catholic Guide to Depression, page 29)

So, if you have a friend or family member with chronic illnesses and depression, it is really helpful to include them--to be inclusive--but it’s a fine line when it comes to helping.

The person has to be open to wanting help, yours or someone else’s. Check ins, for me, are appreciated--ensuring that I’m taking care of myself as well as I can (getting enough food and sleep), reminding me to clear the decks if at all possible. Listening can be very useful. There really isn’t much that can be said in regards to things family and friends can do, which is frustrating, I know. Essentially, being there, checking in, and ensuring inclusion are always helpful. (For me. That doesn't mean that I won't get irritated--like, what, do they think I'm five and I can't handle things myself? But I know your intentions are good!) There are things people can do--bringing food, or helping with chores. I'm single, which means that it's easy for me to get alone time, but it also means that I am responsible for everything in my house. I don't have a spouse who can help me take care of the day to day things that still happen when you're sick or otherwise out of commission. 

There’s a scene in the movie The Hours which sums up the concept of asking beautifully. Virginia Woolf, having been sent to “the country” for her health (Virginia struggled with many mental illnesses), is sitting with her sister, Vanessa, in the garden of Asham House, Virginia’s home. Vanessa is talking about a party she had, to which Virginia had not been invited, and Virginia has asked why she wasn't invited. 

“Are you not forbidden to come? Do the doctors not forbid it?” Vanessa asks.

Virginia looks at her sister for a moment. “Even crazy people like to be asked.”

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.

Out, damn'd spot!

It's not lovely, but it's still attached....

So last week, when I wrote about delaying a Mohs surgery? 

Sigh. That won't be happening.

In case you're new here--When you are immunosuppressed, you have a 10x higher chance of getting skin cancer than the rest of the population. Last year, I had a few Mohs surgeries to remove some squamous cell carcinomas, one of which involved my scalp and plastic surgery to fix it (I forget the technical name at the moment--something about scalp rotation). 

This year, when I went in for my skin check, my dermatologist biopsied a spot on my right hand. 

The thing you need to know about my right hand is that my right hand is my burned hand.* It's the hand with the skin graft (as you can see in the above photo). Grafted skin is very sensitive skin. It hurts if I just bang it against something much more than my normal left hand. Something just moving across it with a little pressure can tear the skin. And it's my right hand, which is my dominant hand. So you can see--problems here. So I wasn't keen on having the skin cut up for something that didn't need to be done. 

Well, turns out it does need to be done. Sigh. The cells aren't melanoma, but they will be eventually. They're really close, actually. So, out damn'd spot. 

The spot is small, so it shouldn't be too bad. It shouldn't affect how my hand works, but I can't get it wet for four days post-op. (Mohs surgery really isn't surgery, proper. You're awake for it. No IVs are involved, no anesthesia other than the local that the skin gets. In this case, we're using a topical one that will numb the skin up well before we go in with the needle, because this skin is so sensitive to anything.) 

So, as much as I didn't want to do this, I don't have a choice, and my logical Spock side won out. There will be some Valium involved, because I want to make sure I can keep my hand still and not overly freak out. I have a high pain tolerance, but there's just something about hands--and also, this hand hasn't had anything medical done to it since the skin graft 12+ years ago. So, it's out of practice! 

I will also reaffirm all my sun protection things that I said last year: Don't tan! Do not "lay out"! Wear sunscreen! Wear hats! Get swimwear with sun protection (UPF) in it, like these! (I love the Pacifica series. I wear them all the time. With two of them, I can rotate wearing one and letting one dry when I go on vacation. And also, you don't have to worry about the top falling down or kids grabbing you and exposing something that the whole pool shouldn't be seeing! They are crazy comfortable!)

So, next week, more bad cells gone. Out, damn'd spot! 

*The burn happened during transplant surgery; an IV infiltrated--basically it skewed out of the vein and into the skin. But the med that was going through the IV (calcium, I think) kept infusing--into my skin. Yeah. That's not good. So when I woke up in the CTICU, my right arm was heavily bandaged, and I was really confused because why was my arm bandaged??...but anyway, calcium burns. There was a question about whether or not I'd lose my hand and lower arm, but fortunately, that did not happen. It's not pretty, and I'll still get somewhat invasive questions about it from time to time, but I'm just glad my hand and arm are still attached!

Medicine Is Good

It seems baffling that I have to write this, but here we go.... :) 

Medicine is good. 
Doctors are good. 

There are too many people out there who are willing to lure people into the trap of "medicine is a scam, you don't need medicine, you need holistic, natural, chemical and toxin free things and then you will be SO HEALTHY! We can eliminate disease! We can get rid of drugs! Yayyy!" 

Guys. 

No. 

OK, first off--everything is a chemical. Water is made of chemicals. Chemicals are not bad. You are made up of chemicals! 

Are some doctors way too quick on the trigger to prescribe meds that people may or may not need, for conditions that may or may not need treated? Sure. We see this all the time with high cholesterol meds. Our bodies need cholesterol. Cholesterol drugs can cause a lot of harm to the body, especially to women, who were not studied when these drugs were tested.

For example, I have high triglycerides. I always have. My grandmother has them. My mom has them. We do not have any heart disease, or history of it, amongst the women in our family. When I was prescribed Lipitor after my transplant, I took it--and then my body rebelled. I had incredible joint and muscle pain. There were days I could barely move. All I wanted to do was sleep. Turns out, statins can cause lots of damage to joints and muscles. So I told my doctors, we can either have me take a drug that's not doing anything, or you can have me moving and productive. You cannot have both. 

You have to know yourself, and your history, and the risks of medication. What is high blood pressure--I mean, numerically, what is it? It's changed lately. Why? What's the rationale for that? Does it really need to be treated with a pill? Maybe, maybe not. It depends. 

But let's stop saying that we can rid the world of disease "if only" people would eliminate toxins, stress, chemicals, etc., etc., etc. That's not plausible. There are certainly ways to reduce stress and toxins. But eliminate them? I don't think so. 

I remember Mike Huckabee saying that if people just ate right and exercise, we could get rid of disease. 

Guys, that's not true. 

Drug companies make drugs that save lives. Doctors are awesome. Without drug companies, I'm dead, and so are a lot of other people. (And yes, they also make drugs that make life more pleasant, in general. Not everything a drug company produces is life-saving. I know that. :) But the popular drugs are what fund the R&D for the not so popular ones, like the immunosuppressants I take, or CF meds, etc.) 

There is no way I could cure my CF by living "holistically." It's not possible. Sometimes, you need meds, and you need things taken out of your body. Sometimes, we need modern medicine, which, on the whole, is a great thing. 

Sure, you can try taken gluten out of your diet, or yoga. I love my yoga. I do eat less gluten than I used to. But there are some things that require medication, and that's not a bad thing. Drugs are not bad. They shouldn't be vilified. They are a tool to be used when they need to be used. (This is especially true in the case of anxiety and depression. Guys. If you are anxious or depressed, and you're doing other things already, then adding a drug to the mix might be very, very helpful. Do not feel ashamed! Seriously. Do not.) 

So let's use meds, when we need to. Let's stop saying that, "oh, my cancer went away and I didn't do chemo. So, you know. " There's an implication in these statements that medicine is somehow the weaker option, the easier option, the lemming option. 

Look, if you have cancer and it "went away" with diet and exercise, OK, great for you. Fine. But that's not something most people should do, OK? Most people need chemo or radiation or surgery, or all three. They just do. That's the first-line treatment for a reason. 

If you want to watch and wait on treatment, again, as long as you're doing it prudently, great. ** But I roll my eyes whenever I see people say that some magical thing is going to save the the world and cure everything. It's a modern version of selling snake oil.

If you have serious medical issues, then you need medical care. You can certainly use complementary therapies. They are useful and, often, helpful! Medical massage is a wonderful thing. Mindfulness practices, body scans, TENS units, even hypnotism--other therapies are great (Music therapy, art therapy, etc., etc.). I will diffuse lavender oil if I'm really stressed out, and I drink valerian tea every night before bed. Ginger tea is great for nausea, and peppermint tea can help with headaches. There are things that are good about the natural world and we need to use those too. When I was really nauseated post-transplant, the pharmacist suggested gingersnaps, instead of anti-emetics (although we did use those, too.), because ginger helps settle the stomach (as does garlic, coincidentally).  It's good to know and use these things.

Combine approaches. Neither side is totally good or totally bad. There are bad parts of the medical establishment. I've met them. I know they exist. And I try to help you avoid them at all costs! :)  But I roll my eyes and get angry when I see people refusing to use the gift of modern medicine, of antibiotics, of vaccines, of treatments, because they think it's impure or dangerous or not needed or whatever. 

Do what you can to reduce stress and get good sleep. Eat well. We should all eat less sugar. Move a little. You know--the basics. But then, if you're doing these things, and you still have problems or symptoms--go forth and get help. It's OK! Run it by your doctor. 

As William F. Buckley said, "Be open-minded, but not so open-minded that your brain falls out." 

**Just to be totally honest: I'm going to my dermatologist today. She was worried about a large freckle on my right hand at my last visit and biopsied it. It came back as non-cancerous but as weird. Now, under normal circumstances, I'd probably be OK with what she wants to do, which is Mohs surgery to remove the weird cells. But my right hand is my burned hand. I do not want to mess with this hand unless I absolutely must. First off, it's my dominant hand. I don't want to risk damaging it or even losing it. Second--and again, being honest--when you mess with burned or grafted skin, it hurts. A lot. Just banging it on something hurts. I have a high pain threshold, but i don't think I can hold my hand still while it's cut in to multiple times on very sensitive skin. 

So, I'm going to say that I don't want to do anything right now. I just want to watch the spot, and if I see any changes, I will report them immediately. I have talked about this with my parents (My Medical Council), and my transplant nurses. They are all OK with this approach. So it is prudent, for me. So, I am taking my own advice here. :) 

Goal Setting 2018: April results and May goals

It's MAYYYY! Yay! 

So it's time to revisit my goals! Let's get started. 

Goal Number 1: 

Work through Dave Ramsey's Baby Steps for Financial Peace to cultivate good stewardship, gratitude, and contentment.

April goal: Start the debt snowball; this is baby step 2, where all your debts are paid off. Fortunately I don't have much to do here! 

Status: Started! Yay!!

May goal: Continue working the snowball. 

Goal Number 2: 

Find an agent for my manuscript

April goal: Write a darn proposal!

Status: DONE!  I sent it to a friend of mine to read/peruse, so now I'm just waiting for her feedback. Once I get that, I can make any changes and send it out!

May goal: Send it (hopefully!) 

Goal Number 3:

To deepen and strengthen my relationship with God, because He is the center and the well-spring.

April goals: Confession/Holy hour/Weekday Mass once a week

Status: Confession, check! Holy hour, check! Weekday Mass....no check. Sigh. Something still to work on!

May goals: Confession, Holy Hour, and at LEAST ONE WEEKDAY MASS. Just one. :) 

Goal Number 4: 

Continue to lose weight and treat my body well so I can do everything else I want to do, and honor my body which God made.

April goals: Focus on healthy snacks and regular workouts. 

Status: Did really well here. Lost some weight (yay!), have found new healthy snacks, and I'm still doing yoga classes regularly. I've also continued to make progress on body measurements. I take my measurements on the first of every month, and this is where I can really see progress, or not. So I'm glad to see progress being made!

May goals: Consistent working out--yoga classes; continue to focus on health snacks. 

Goal Number 5: 

Grow Barton Cottage Crafts, to help with baby steps (goal 1), but also to have a creative outlet and for enjoyment. 

April goal: Finis commissions and get new ones.

Status: I did finish my commissions, and I'm working on getting new ones. Part of that is the new Barton Cottage Crafts page here on the site! I'm really proud of it! So in May, while I wait for commissions, I'm going to be working on new projects, as well as starting to plan knitting projects for birthdays and Christmas--because guys, handmade takes time. So if you want birthday presents/Christmas presents, you have to get them early. As in, now is not too early!

May goals: See above. :) 

Goal Number 6: 

Have a beautiful, peaceful, welcoming home so I can appreciate what I have, encourage hospitality, and cultivate peace.

April goal: Get another KALLAX unit for the living room. 

Status: The one I want isn't in stock--and wasn't for ALL OF APRIL. Grr, IKEA. Grrrrr. So I'm waiting for that. In the mean time, working on keeping spaces clear. I did do a lot better in having people over in April--I would say come on over, knowing the house would be presentable. So that's great. 

May goal: Pray that the KALLAX comes back in stock? :) If it does, that'll happen. If not--continue weekly clean/focus on certain areas (FlyLady zones, if you're familiar with those), and keep inviting people over. And continue contentment challenge--that fell off in April, so I'm doing month three now!

Goal Number 7: 

To nurture my creativity so I can learn new things, inspire myself, stretch my mind, and feed my soul. 

April goals: Knit two new Quince projects, start reading Artist's Way, get new commissions. 

Status: I knit the projects! Yay! And I have big plans for more new ones....I didn't read Artist's Way, but that is definitely on the list for this month. Commission--see above.

May goals: Start new knitting project; start reading Artist's Way. (I have to DECIDE on new project. I think it's going to be a tricolor cowl, but that means getting yarn, or a cowl with a textured stitch, in order to really "get" working in the round done.) 

This month, my brother is getting married--NEXT WEEK, holy cow!--so I didn't go hog wild on my goals. My daily goals are balancing my checkbook (yes, old school!), lectio, knitting, and working out 5/7 days a week. So they are important goals, but it's not a ton, so I can really focus. I didn't want to stress this month. I want to celebrate and enjoy this big moment for our family! :) 

Doctors, Death, and Alfie

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

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

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

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

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

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

But hospice is truly death with dignity. 

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

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

And this brings me to Alfie. 

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

Doctors are not infallible. Doctors can be wrong. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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