Emily M. DeArdo

writer

transplant

More skin cancers!

health, transplantEmily DeArdo2 Comments

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

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

journal, transplantEmily DeArdoComment

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:

IMG_7837.JPG

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

journal, transplant, essaysEmily DeArdo1 Comment
 Roses outside the parish priory

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

CF, family, essays, organ donation, transplantEmily DeArdoComment

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

(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

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 

IMG_5616.JPG

I started writing and editing for Take Up & Read. 

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

IMG_7391.JPG

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! 

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

CF, essays, health, transplantEmily DeArdo2 Comments

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!

organ donation, transplantEmily DeArdoComment
donation.jpeg

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: 

the Shoe .jpg

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

CF, essays, transplantEmily DeArdoComment
 Trivia night victors! 

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

essays, health, transplant, CFEmily DeArdo2 Comments
IMG_5854.JPG

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. 

IMG_5847.JPG

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

food, health, transplantEmily DeArdo3 Comments
 Me as an intrepid toddler. 

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"!

books, goal setting, give aways, transplantEmily DeArdo6 Comments

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! 

Surgery update!

health, transplantEmily DeArdoComment

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! 

Transplant side effects: Skin Cancer

health, transplantEmily DeArdoComment

I generally don't worry about statistics. 

Before transplant, I caught bugs that very few people caught. Non-infectious Tb? 4% of the CF population gets that. The bug that almost killed me in college? One other person in the world. Seriously. Not kidding. At least, documented, one other person

Post-transplant, my stats are flipped. I'm still in the small percentages, but it's good. I'm one of the 55% of women who made it to five years post-transplant. There isn't even data for 10 year survival rates on the UNOS (United Network for Organ Sharing) website--and I'm looking at hitting 12 years in July. 

So when my transplant coordinator, way back in that first July, talked about skin cancer and sun protection, I just sort of nodded. Our ("our" being transplant recipients here) risk of getting skin cancer is 10x higher than the general population. But, I've always been really good about sun protection. I've burned maybe three times in my life. I keep lots of sunscreen around. I seek shade. I go to the dermatologist every six months to get checked out. I am fair, but I'm also Italian, so that probably helps a little bit--but I am generally quite protective of my skin. I'm very familiar with SPF and its iterations in products. 

But. All that being said--eventually, the statistics might catch up with you. 

And so it was that, when I visited the dermatologist last week for my yearly skin exam (I see her more often than that, but this was the annual full body check), she biopsied three suspicious spots. 

And all three of them came back as types of skin cancer. Squamous Cell Carcinoma, (SCC) to be exact. 

So tomorrow I'm having mohs surgery to have these spots removed. We're not doing all three at one go; we're breaking it up into two sessions, one this week, and one next. Mohs surgery involves the surgeon (which my dermatologist is) taking very very very thin slices of skin, examining them under a microscope, and checking for cancer cells. She removes these layers of skin until the microscope shows no more cancer. And voila! No more cancer! So I don't even want to call it cancer, because seriously, this is like, minor leagues. I go in, I get some skin cut off, and we move on. Easy. 

Now, that being said, SCC can be fatal. 8,000 people die of it in the U.S. every year. And of course now I even have to be more careful about sun protection. All my v-neck t-shirts? Gone. I'm going to be adding to my hat collection. There are going to be multiple SPF products in my purse at all times. 

But I can get this fixed and keep it in check with regular dermatologist appointments, and possibly some immunosuppression tweaking. Because that's the big part of the issue. 

Some of the meds I'm on  make the skin photosensitive--really sensitive to light, and can cause it to burn much faster than a normal person's. Hence, the good sun protection strategies I had in place. 

But the immunosuppression drugs also keep the immune system from functioning properly, as we know. And that includes hampering its ability to kill potential cancer cells. 

I've gotten rid of one med that made my skin photosensitive--good! And now we're trying to see what we can do with the immunosuppression. We might not be able to do much, because there's not a wealth of pharmaceutical products we can choose from, here. But we'll see what can happen. Obviously, we want to keep my lungs in tact! And if push comes to shove, that's what I'm choosing. I can wear more sun screen and have my skin checked more often, but it's really hard to find a new pair of lungs, as we know. 

I'm also using this post to implore you to protect your skin, especially if you're fair like I am. Seriously. I know I'm a a much higher risk for these things than the general population, but skin cancer, in general, is skyrocketing in the U.S. Tans are not cool, people. Don't go to tanning beds. Don't "lay out" for hours to get toasty brown. That's not a good look.

  • Wear hats (big sun hats when you're at the beach--baseball caps don't cut it. If you do wear a baseball cap, put sunscreen on your ears!).
  • Wear sunscreen all the time. You can get sunburned on a cloudy day. 
  • Get sunglasses with UV protection in the lenses.
  • If you really need the extra protection, do what I do and get face cream with SPF in it. (This is my favorite. And if you get the big one, it will last you almost a year. Seriously. Mine has. So it works out, budget-wise, because it's cheaper than the drug store bottles of moisturizer that you keep buying. And it's very hard to find SPF 30 in a moisturizer!) And it's worth it to get SPF protection anyway, even if you just want to minimize/delay signs of aging.There's also Clinique City Block.
  •  Fresh's Sugar Lip treatments are what I wear during the day now instead of lipstick, because SPF 15! I really don't want to get part of my lip cut off, guys. And neither do you, I bet. Or grab a regular lip balm with SPF in it. Those aren't hard to find. Foundations and BB/CC creams also have SPF in them. (Bobbi Brown, Supergoop, and Smashbox are three brands to check out.) 
  • This is a revelation to me--hand cream with SPF 40. Seriously? Awesome. 
  • And finally, get clothes--or at the very least, swimwear--with UPF, which is like SPF for clothes. I started wearing one of these last year, and I'm getting another one for our trip to the beach this year. Yes, I can go to the beach, and I'm going to be there with an umbrella, lots of sunscreen, this coverup, and hats! Other companies that have UPF items include Lands End and Duluth Trading Company. It's becoming more and more common, thankfully. 

Anything you do to protect your skin is better than nothing. So even if you're not nearly as high risk as I am, do yourself a favor and learn how to protect your skin--and do it. Be smart. 

 

Reviewing the Situation

transplant, healthEmily DeArdo1 Comment

(If you're not a musical theater nerd, the title is from a song in Oliver!) 

So, being off prednisone is fun. Kind of. 

In case you missed it, at my last clinic visit on Halloween, my doctor gave me the go-ahead to go off prednisone for a month. Then I'd do PFTs (pulmonary function tests) again. If things were stable, I could stay off. If they were terrible, then I'd have to go back on. 

I knew that, even though I was only taking 5 mg of prednisone once a day, that being on it for 11+ years would mean a fairly rough adjustment period. I knew there would be joint pain, for one, because my joints are like that. 

So I said I'd give myself a week to adjust. 

Now I figure I better give myself the month. 

Prednisone affect so many things. It affects hormones, which is really the biggest issue. But what that means for the body is that, when you remove it, all or some of the following can happen while your body adjusts back: 

  1. headaches
  2. joint pain
  3. muscle pain
  4. low blood pressure
  5. low blood sugar
  6. dizziness
  7. trembles in your hand and feet
  8. extreme tiredness
  9. nausea
  10. vomiting
  11. low energy levels
  12. Increased anxiety
  13. Weight loss (YAY!) 
  14. dehydration 

That's just some of them. Mine have mostly been physical, and they keep changing. At first it was just the joint stuff. Then the low blood sugar set in, which means I need to have sugar/candy/juice/carbs around the house, to prevent my blood sugar from going too low. I can't say I'm sad to have to have these things around.....but yeah. I was Christmas shopping today and at the checkout counter I was hit with a I have to eat now or I'm going to faint and /or throw up all over this guy while we were talking about gift receipts. Fortunately I held it together until I could get to Jimmy John's and have myself some sandwich and Diet Coke. (I'm still main-lining the Diet Coke as I do this, because I'm still trembly, which is a sign of low blood sugar for me.) To keep the blood pressure up, more salt is recommended, too, but that's sort of always recommended when you have CF, because your salt levels are so wacky anyway.

I tend to have spurts of energy in the morning and then around 12:30-1:00 have the urge to just nap, or curl up and read, which doesn't require a ton from me. Then I get another spurt of energy from about 5:30-10:00. Let's just say my housekeeping is sort of...all over the place right now. I'm trying to keep up with it during the spurts of energy. I'll nap, and then go to bed around 10, because I'm tired again. 

I have lost weight from last week--yay!--and I've noticed that my appetite has decreased measurably. Also yay. Two good things. 

There's also a little bit of brain fog. I'm working on countering that with writing lots of lists and trying to get enough sleep. 

So if you know me in real life, and I seem like I'm cancelling more often, or I'm saying no to things, or you come to my house and it's like, wow, that's a lot of dishes in the sink: I'm working at about half power right now. :) 

In the end, I have no doubt that it'll work out fine. I mean, to be off prednisone is a good thing. It means my bones will be stronger. My blood sugar will be more normal, as will my blood pressure (although it was already pretty normal). I'll lose weight! My appetite will go back to normal!

But right now, it's sort of like, OK, body, you're getting what you want. Hopefully on the other side of this is happiness!! Prednisone-free life!! That's the goal that I'm working toward. 

But if I fall asleep on you, it's not you. (At least, I don't think so. :-P)

 

 

 

 

 

 

Seven Quick Takes No. 128

7 Quick Takes, health, transplant, writing, fictionEmily DeArdo2 Comments

I. 

ICYMI: I wrote other things than the 30 Days series this week! Here's a post on the Four Last Things--in time for Halloween. (Or it was when I posted it!) And part II of my Houston Postcards.

II.

I had clinic on Monday. The X-ray is good, the PFTs are in their normal range, so that's all happy. The biggest happy, though? I got to go off prednisone! Yayyyy!

Prednisone is a steroid that does some nasty things to your body. It keeps inflammation down, and it's widely used in the transplant world. In other types of transplant, people can go off this drug after a few years. In lung transplant, that's much less common. So I knew that there was a good chance my doctors wouldn't let me go off it. But I'm 11 years out, I'm stable....I might as well ask!

"These lungs are basically yours," my doctor told me, so he didn't see a problem with me trying it. I have to go back for lung function tests (PFTs) in December, to make sure that nothing evil is happening in my lungs. But right now, I am off prednisone. 

III. 

I'm not going to lie: the first few days of this have been rough. After only seven days, your body adapts to prednisone and makes changes in a lot of ways. I've been on it for eleven years. Tuesday, Wednesday, and yesterday were a bit tough as my body adjusted to being off it, especially in the muscle/joint department. They liked steroids. I'm hoping that now that I have good lungs that are not full of Evil Bacteria, my joints will be happy without the prednisone. (CF people often have a sort of quasi-arthritis--it's not "real" arthritis, but joint pain, stiffness, etc. happens.) I really didn't miss all that insanity, so I'm hoping that they're going to be happy without the pred. 

IV. 

On Wednesday I got to see one of my favorite singers, Canadian artist Loreena McKennit. If you're not familiar with her music, here's a few tastes: 

 

 

She's hard to categorize; sometimes she's labeled "Celtic", sometimes "new age", and sometimes "world", but I just say she's great. She rarely tours, and very rarely tours in the U.S., so when tickets went on sale for her one concert in town, my friend Suellen and I jumped on them.

Our AP English teacher, Mrs. Low, had introduced us to Loreena's Music, with "Lady of Shalott" and "The Highwayman"--so we've been fans for a long time now. (Yikes, 17 years!) Hearing her sing "The Lady of Shalott" in person has vastly added to my lifetime happiness. 

V. 

I'm also doing NaNoWriMo! This is my fifth year. I'm writing a story about a girl who enters a monastery. I've been wanting to write a novel about nuns for awhile, but having seen a lot of recently released novels that paint nuns in a less than flattering light made me move this story forward over other NaNo ideas. It also has a strong ballet component, so I'm writing about two pretty rarefied worlds in one novel. (And no, it's not like the ballet in Trouble With Angels. Ha!) I'm going to hit the 10K mark today. 

(If you're not familiar with NaNo: The objective is to write a 50,000 words novel from start to finish during the month of November.) 

VI. 

As soon as I hit 10K today, I'm watching The Crown on Netflix. Seriously. I love Claire Foy, I love the Royals, I love Netflix....it all works together for pure binge watching enjoyment! (And there's going to be a second season! WOOOOO!) The goal is to have 60 episodes over 6 seasons. So Claire Foy is playing Queen Elizabeth II in the early part of her reign. I'm so excited. Seriously. Royal geek, right here. 

(And Stephen Daldry is directing episodes! He directed one of my favorite movies, The Hours.) 

VII. 

OK, wow, that's enough fan-girling for one post. Sorry guys. :) Have a great weekend! 

Next week--my October reading wrap post. It's long! It's fun! 

Why "powering through" illness is a bad idea

health, transplant, essaysEmily DeArdo1 Comment
 Not a good idea when you're sick 

Not a good idea when you're sick 

Hillary Clinton is in the news, not because of her presidential campaign, but because she has pneumonia. Apparently, she's been sick for awhile, but the official diagnosis came from her doctors/her campaign yesterday. 

There was a lot of talk on Twitter (and I presume elsewhere on social media) about how women just "power through" illness. "We do lots of things when we're sick!" women were saying. "We're awesome like that!" 

Well, actually, no, ladies. It's not awesome. Trust me. 

I did a fair amount of "powering through" for the first 23 years of my life. And no, I wasn't running for president. I was trying to be as "normal" as possible. That meant school, extracurriculars, summer jobs. I went to school when I had a noncontagious form of TB and was falling asleep in my first period class because I was so tired. I had a summer job the summer after I almost died and spent two weeks in the ICU. I was so desperate to sing in my college choir's big Christmas Festival that I went from the hospital, to class, and then back to the hospital because I finally realized that, yes, I was way too sick to be in class, much less perform in a three-hour concert. 

There were times my college boyfriends had to almost hold me down to keep me from going to sorority meetings, or Student Government events. 

Some of this pigheaded Irish determination was a good thing. It kept me involved, it kept me active, and I had a great time in college. But some of it was really bad. I didn't know when to stop. I worked up until the weekend before my transplant. Seriously. I had to drag myself out of bed every single day, but I was there at my office. The only time I wasn't was when I was in the hospital. I might have come in a little later in the morning, but I was there

After my transplant, this all changed. Partially because I was much more susceptible to illness, including getting illnesses from other people. I had to learn to say No to going to things when sick people were there. I told my friends that if someone was at a party and that person was sick, I wasn't going to go. 

I had to make sure I got enough sleep. This is huge for me. I realized that I needed 8-9 hours of sleep every night. I definitely had not been getting that. And when I was sick, I needed to be sick--and not "power through." Because powering through only made it worse

I had pneumonia this past winter. I was in the hospital for almost a week, and it took me more than a month to recover when I was back home. Pneumonia kills millions of people a year. It's a nasty, nasty bug. And yes, I'm more susceptible to it, and always have been. But people over 65 are in the high-risk group, too--and Hillary Clinton is 68.  

Pneumonia isn't something that you can "power through." There is "walking" pneumonia--a milder case of it. But it's something that requires rest, and lots of it. You feel like you've been run over by a truck. It's Not Fun at all. And if you don't rest appropriately, then guess what? It lasts longer

Ladies, we have to stop "powering through." The world isn't going to end if we're sick. (OK, this might be different if you're the President. Or, even, Secretary of State.) But that's two people in the world. Listen to your body, and give it what it needs! Let yourself heal! Don't put yourself--and others--at risk for being sick. Do the counter-cultural thing, and take care of yourself. 

It's not easy. I know that. I spent 23 years resisting this entire idea. "I can rest when I'm dead!" 

Well, if you don't take care of yourself, you're going to be doing that sooner rather than later. 

 

 

Amazing Grace

essays, transplantEmily DeArdoComment

Amazing grace.

That's really all that can be said about eleven extra years on the planet. 

That's more than 4,000 extra days. 

That's sort of staggering, if you think about it. 4,000 days. 

Extravagant grace. 

Extravagant gift

Some people, post-transplant, talk about bucket lists. About climbing Machu Picchu or going around the world and seeing the great sights. And I've done some traveling, post-transplant. I've done some things that I never thought I'd do, and met people I never thought I'd meet. 

But the most delightful things are the small things. 

Getting to see my godson graduate from high school. 

Holding a four year old on my lap during a fireworks display. 

Sharing root beer floats with friends. 

Deeply diving into God's life in me, deepening His life within me and my relationship with Him. 

Feeling the ocean waves wash over my bare feet. 

Of course, all of this is only possible because Suzanne was an organ donor. When she died 11 years ago, her family decided to honor her wishes and donate her organs. And since she died due to a brain aneurysm, her organs were in great shape. She saved a lot of lives that day, including mine. 

If you're not an organ donor, please be one. 
If you are, tell your family that you are one. 

Some people, when faced with health issues or other problems, wonder "why God has done this to them." And I've never thought that way. I'm not a saint. But I've never wondered why all of this happened to me. 

God gives everyone their cross--and it's a cross that fits them. This is the one that fits me.  My salvation only comes this way. And if I can drag a few more people to heaven with me, then that suits me just fine. :) 

I'm writing this in a coffee shop on a sunny summer day. It's a totally ordinary day in July. But it's a day that I never would've had, without Suzanne's generosity, and without the incredible skill and dedication of a whole team of medical people. 

Eleven years later, their skill, and their work, still live on.

I am so thankful for them. I'm thankful for Suzanne, of course, and her family. And even on the bad days, I am so thankful for every moment of ordinary joy. 

Amazing grace. 

The Fight for Joy

essays, health, transplantEmily DeArdo4 Comments

The tagline of this site is "Celebrating Ordinary Joy." And that's what I try to do on a daily basis--to remember that this life is so incredible, such a miracle, that everything is Joy. The brown bananas in the freezer awaiting their transformation into muffins; the roses and sunflowers in a vase on the counter; even the trash bags that need taken out. Everything is a gift. 

But that doesn't mean it's easy. I never wanted a Pollyanna tag line, where we play the glad game, and blithely ignore realities. Sometimes, reality is hard. 

Last week, I felt as low as I've ever been. I tried all my normal things--journaling, napping, bubble baths, talking to friends, a holy hour, a weekday Mass. When I go to Mass, no matter how crappy I might feel, usually the consecration floods me with peace. Not on Friday. On Friday I was totally just at Mass. I didn't feel a thing. It was like robot-me. 

I talked to my therapist (Most people, post-transplant, see a therapist. It's par for the course.) I basically didn't talk--I sort of fell apart. I was a mess. I wasn't sleeping, I wasn't eating right, I was forgetting conversations I'd had two days ago--and I don't do that--and I had no idea why. 

Joy was really far away. Incredibly far away. I thought about the tagline and I laughed. Joy? Really? JOY right now? 

No Joy. 

On Saturday, I was very gentle with myself. I read a book suggested by Elizabeth--The Awakening of Miss Prim--and I re-read the Restore workshop pieces. I went to Mass. I made dinner. I slept when I could. 

Today, I had a doctor's appointment. It was my normal clinic visit, but I was anxious because I didn't know what was going on with me. I wanted to find out. So I spilled out all my symptoms in a flood of words. 

The doctor and the nurse listened, and we figured out what it is. It's nothing major--it's just my body adapting to different drugs, and readjusting hormone levels and all those delightful things that happen when you're taking very powerful medicine. 

So my body has to readjust--and this will happen both physically and mentally. As it readjusts, things will go back to baseline. But until then, it's measures to fix the symptoms--sleeping when I can, getting good food and exercise, having the A/C set just about arctic. :) 

I'm so happy that I'm not crazy. 

But during those foggish days, days when joy seemed so far....it was hard to remember to look for the ordinary joy. 

But it's there. It's always there, even when I couldn't see it, or couldn't feel it. 

When it's elusive, hang on. Keep looking. Find that one thing. It's there. And that one thing can be a crack of light that you need to keep looking, keep seeing....what keeps faith. 

 

 

 

Sugarcoating Suicide: Me Before You (Or: Why you should not read this book or see this movie)

life issues, transplantEmily DeArdo27 Comments

I get really, really tired of defending my existence.

If it isn't people telling me that my transplant was immoral, it's people who think that assisted suicide for disabled people is a good idea, and a sign of love. 

Yes. Because, you know, nothing says I love you like KILLING YOU. 

Let's look at the cognitive dissonance, here: When someone--say, Robin Williams--commits suicide, social media is flooded with messages like, "suicide isn't the answer", "please get help-- don't be afraid of getting it", "I wish people knew that they could talk to me if they're ever feeling like this." Etcetera. You all know how this goes. People are sad, as they should be. People continually say that suicide is NOT a good option. And it's not. 

But: when it's a disabled person who kills himself, oh, well, that's love

And that's exactly what happens in the new movie Me Before You, based on the novel of the same name by JoJo Moyes. In it, a woman falls in love with a quadriplegic man she's taking care of--but, oh, he wants to kill himself. Because, you know, life in a wheelchair isn't worth living. And if she REALLY loved him, she'd go with him to Switzerland and be there when he kills himself. Because that's love: supporting you in all your bad choices! 

No. You know what love is? Love is what Mary Lenaburg and her family did for her daughter, Courtney. Love is what Kelly Mantoan and countless other parents do every day for their kids who need their help. Love is my mom washing my hair when I'm nineteen years old and her back hurts, or my dad staying up during countless ER runs with me, or my siblings learning how to reconstitute and push IV drugs. THAT is love. 

My life isn't perfect. Show me someone who says his life is perfect, and I'll say that this person is a liar. Did it suck, being twenty-three years old and not being able to brush my teeth without sitting down after? Does it suck now, when I have to ask people to repeat things because I don't always understand them, or when my CI malfunctions? Yeah. But I would never, ever say that that was worth being dead. Obviously, I like my life just fine, since I've been to the edge of death and come back from it five times. I must think that something is worth living for. 

When we start sugarcoating assisted suicide--like in The Sea Inside, Million Dollar Baby, and The English Patient--we are trying to make it morally acceptable. We're trying to tell people that suffering is bad and we should avoid it at all costs, even by killing people who are suffering. Guys. That's not love. That's not living boldly, as the movie's tagline execrably proclaims. 

Living boldly is living the way my friend Sage does, while she waits for a lung transplant.  It's what Andi's kids do every day, whether they're running crazily at a T-ball game or singing in show choir. Living boldly is embracing life in all its highs and lows and living anyway.  

I've had people tell me that they would've aborted me, if they'd been my mom. 

To my face, people. 

* * * 

In The Giver, a dystopian novel by Lois Lowry, Jonah, the main character, discovers that what everyone calls "release" is actually euthanasia. In his community, old people are killed, people who break the rules three times are killed, even one of a set of twins is killed. Babies that don't sleep through the night when they're a year old are killed. Why? Because they are inconvenient. Because they make life difficult for the community. Jonah can't live in a system like that, and runs away with Gabriel, a baby that is slated for "release." He risks his own life to save the baby's--because if you try to escape from the community and are caught, you are "released." 

The community's highest value is ease of life. No one experiences pain. No one, actually, experiences any emotions. People take a pill every day so that they don't have emotions. Parents don't have children--they are "given" children, who are born via artificial insemination. When Jonas asks his parents if they love him, they laugh at him and say it's a meaningless word. And thus, the community medicates away their humanity--and kills what is inconvenient. 

Yeah, it's a book--but are we that far off from that? Where do we stop? 

The abortion rate for Down Syndrome kids in the U.S. is 67% In Europe, it's 92%. We are killing babies because they are imperfect. Because they are inconvenient.  This Atlantic headline pretty much says it all--why on EARTH would you keep an imperfect baby? 

People sue for "wrongful birth"--saying that they wish their babies had never been born. Not all cases of CF are detectable in utero, because there are thousands of possible mutations. So if a kid with CF is born, and his parents don't like it, they sue. They can pretty it up all they want and say they need the money for the kid's care--but it's not about money. It's about having a kid who isn't perfect, and someone needs to pay for that. Someone made "a mistake."

Jesus had something to say about this: 

 

You know who made the "mistake", here? It was God. And no, it's not a mistake. God did all this for a purpose, and for a reason. My crazy genetic code exists to bring Glory to God. That's why I'm here.  

Suicide is not an answer for anyone, at any time. It's not romantic and it's not brave. In the case of assisted suicide, it's reprehensible. 

Life has value beyond its utility. We are not cogs in a machine. We are human beings created in the image and likeness of God. And to purposefully commit suicide is not brave. It's cowardly. It flies in the face of bravery. 

I'm not a hero. I'm not a saint. I screw up. But the answer to challenges isn't to give up. The answer is to live the best you can, in the circumstances you are in. Love is helping people find a way to live--not by helping them die. 

 

Seven Quick Takes No. 107

7 Quick Takes, transplantEmily DeArdoComment

I. 

So this week has been interesting from a medical perspective. Not terribly bad interesting, but Interesting, Capital "I". 

I have a port (an implantofix) implanted under my collarbone. I got this before transplant, so I've had it now for more than 11 years. A port is a place where, with a special needle, nurses and other Medical People can draw blood and give meds without having to hunt for a vein. Since my veins suck, my port has been a good and valiant friend for all these years. It means that when I need things--blood draws, fluids, meds--we know we're going to have access. 

Until Monday, when it decided not to. 

II.

Every month, the port has to be flushed with saline and heparin, to keep it from clotting. Since the port is placed in a big vein near my heart, this is important--we don't want any clots flying around and causing trouble, or clogging up the line. And for 11 years, it has worked splendidly. Sometimes we have to finesse the needle, but normally, we get blood return. 

(The "We" in this case, is me and mom. Mom does the port accessing. Yes, she's awesome like that. She wields Huber needles with aplomb, and she's better at it than a lot of nurses I've had.)

This time, no blood return. And I'd also had problems with it in the ER a few weeks ago....so I'm wondering....

III. 

Ports aren't permanent--the silicone cover that you actually poke can only take so many pokes. It's a few thousand. So I'm thinking it's died and gone to port heaven. 

But when we call clinic, oh, no! This might not be the case. Apparently there are many Magical Things we can do to see if the port just has a glitch. 

IV. 

So on Monday, we get to try the first of the Magical Things--a special drug that "sits" in the line and can remove any clots that might be at the tip of the line. The drug sits there for two hours. I sit in clinic for two hours. And then we see if we can draw it off the port and get blood return. 

If so--yay! If not--dye test! 

(I don't really know what the dye test entails.)

V. 

The benefit to this is that I'm going to get new books....so that's something, right? 

VI. 

In other news, though: SPRING!

And yes, that orange barrel also equals Spring in Ohio. 

VII. 

During the March Madness kick off yesterday I managed to wind two hanks of yarn and clean. And I have pink tulips!

Pretty Little Heads: Women, Health Care, and Anxiety

transplantEmily DeArdo1 Comment

Why is there so much....anxiety?

--Former Clinton Cabinet Member Robert Reich

One of the things that always gets my goat in the health care setting is when doctors--usually male--ask this patient (a female) lots of questions about anxiety. 

Now, this is a legit question. I've been on anti-anxiety medication since I was about sixteen years old and I was diagnosed with a type of tuberculosis (TB). I would think that most 16 year olds, after having a near-death experience (and that's not an exaggeration--if we hadn't caught it when we did, I probably wouldn't have seen Christmas that year), would be a bit anxious. My doctor, who is Godlike in All Things, tactfully and gently suggested that perhaps I would feel better with some medication, and also a therapist. 

She was right on both counts. I love my therapist, and I've seen her since I was 16.Other than family and a few friends, that's the longest continuous relationship in my life. Not only is she extremely good at her job, but she's also a very nice person, and I have found her invaluable. 

So, it does make sense, when doing a differential diagnosis on me, to ask about anxiety. There's a history, there. I may be on a low dose of an anti-anxiety med, but I  am on one. I've tried to go off it a few times, but thus far it just hasn't worked. So I keep it, and life is better. 

But. 

(You knew that was coming, right?)

Sometimes, this note in my chart becomes something that doctors use as a crutch to dismiss my concerns. This isn't relegated to just doctors, and it isn't relegated to just men. A memorable incident was back in 2011, when I was on beta blockers in an attempt to stop my atrial flutter. It wasn't working, and my HR was doing its merry near 200 BPM dance. In the ER triage area, the nurse taking my vitals asked me if I was "nervous about anything." She asked the question like I was a very small, very silly girl-child that needed to be soothed and pacified. 

Trying very valiantly not to roll my eyes, I said, "I'm on beta-blockers. I physically cannot get nervous."

"Oh. OK!" 

 I have been asked this questions, repeatedly, many times over the years, in a tone of voice that suggests I am either: 1) not-too-bright, 2) five years old, or 3) both. This is insupportable. Yes, ask me if there's any stress triggers or anxiety-inducing events coming up. That's fine. But don't make it sound like you think it's the reason I'm here, and not because of any physical issues that might require your attention. 

Like I said, it's men who primarily do this, and I wonder--do they do this to other men? I can't imagine the condescending mask covering their faces, the simpering smiles, if they were talking to a 33 year old man. But they see me, and they see anxiety, and they go, oh, she's a little touched. 

This is especially true when it comes to pain. Guys. I know pain. I've had pancreatitis eight times. That's generally considered to be really painful. I've had collapsed lungs (although the Queen of Collapsed Lung heroism is my friend Sage, who has had chest tubes put in without sedation--a feat I cannot even imagine. She is the Toughest Person I Know, Bar None.) I have basically been cut in half and put back together! 

I don't write this to be all I AM AWESOME, but to show you that I know what pain is. When I say my pain is a seven or higher, it's legit. It's not Tylenol pain. IT IS PAIN. I'm not making it up. It's not in my head. My pain is real, and it deserves to be treated as such. 

This last time, this was a consideration. Pain halts healing. After transplant, a certain amount of pain is expected, but if it's too much, you can't get better. That's not good. It has to be managed appropriately. There's a reason there's a whole branch of medicine devoted to pain care! I had a doctor tell me that pain isn't something that happens with pneumonia. (Read: It's in my head!)

It's not? Actually, it is. Google it, people. 

Just because I am a girl, and I am on anti-anxiety meds, does not mean I am "drug seeking." It doesn't mean that it's in my head. I have a very good imagination, but come on. Pain is real. Pain is a symptom of a problem. It deserves to be treated, not just brushed off. There are many ways to treat pain, but the point is to treat it

This is where my psychologist rises above the rest. Not only does she treat CF and post-transplant folk, but she also does a lot of work with people with sickle cell trait, which is exceedingly painful (so I'm told. I don't know, although I do have thalessimia, which is sort of related to sickle cell disease as a genetic level). She--and her other patients--deal with this all the time. Over the years we've done lots of non-med relaxation techniques--tapes, visualization, even hypnosis once (that didn't work. I threw up all over myself.) We've tried bio-feedback, yoga (which does work, for some things), and other methods. It's very all -inclusive. But sometimes--we need the medication. 

What I do not need to be told is that it's in my head.