The Fight for Joy

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. 

Seven Quick Takes No. 115--Not to go all Boromir on you....

linking up with Kelly and the gang. 

I. 
There is logic in that title. Really. :) 

So last week I was watching Army Wives on Netflix (Yes, sometimes I watch soap-ish TV. DO NOT JUDGE.) There was a kid with CF who was brought into the ER with a collapsed lung.

Now, to treat a collapsed lung, an interventional radiologist (so no, not just anyone) has to insert a chest tube, in order to reinflate the lung. It requires cutting. It requires stitches. It requires boxes. It basically sucks. It's my second-least favorite thing to have done, medically. 

(What's first? A pH probe. Seriously. Don't ask. 

Oh, you asked?  OK. 

A pH probe involves sticking a tube up your nose, down your throat, and into your stomach. And the tube sticks to your face and dangles outside of your body because it's attached to a stupid meter. It sucks. A lot. And it hurts. A lot. Basically, it's a tool left over from the Inquisition.)

So anyway, while watching the show--the kid had no tube left in. It was basically, we stick in a tube! The lung reinflates! Let's go home tomorrow! 

Um, no. 

Hence, the below photo, which I created to express my displeasure. 

One does not simply not keep a chest tube in. Sorry. And to remove it also requires an interventional radiologist. Yeah. Stitches, remember.

II.

So, please make the above meme a thing. I think it's awesome and the Internet needs it! 

III.

I have a clinic appointment on Monday, so I'll report back with the results when I get them. Oh what joy, oh what rapture. :) The nice thing about clinic visits in the summer is that the rush hour traffic is significantly better. 

IV.

The recap from this week, in case you missed it: 

Summer scribbles: A taste of summer (My strawberry salad recipe) 

Postcard: Chicago

Catholic 101: Apostolic Succession

V.

Also, I got a picture with this guy:

You know, some random Canadian. ;-) 

The dress is from Shabby Apple. It looks a bit better on TV. I think. Since the photos are taken during one of the commercial breaks, you don't really have time to primp. 

VI. 

The show airs on July 18th! 

I will also be on Jen Fulwiler's Radio Show that day, to tease the episode. :) If you have Sirius, be sure to tune in! I'll have more info as we get closer.

VII. 

Another thing about that photo? The microphone pack is attached to my bra strap. Really. They have a guy who attaches all the microphones. He asks before he attaches it. And he's very professional about it. But that's where the microphone pack is. They remove it before they shoot the "let's all talk at the end of the show" thing, so you won't see it. :) 

Definitions

A week or so ago, I read a piece on the site The Mighty, which is where people talk about life with chronic illness-or their lives with a family member who has it. I can't find the link for this particular story, but it was written by a mother who talked about how her daughter's illness did define her--and she was sort of glad it did. 

I gotta say, I don't agree. 

I'm a lot of things. 

I'm Catholic. I'm a girl. I'm an American. I'm a dramatic contralto. I'm mathematically impaired. I'm near-sighted. 

These are all things I would list before I say "I'm a girl with a lung transplant." "I'm a girl with CF." "I'm a girl who can't hear."

Why in the world would you want to describe yourself by what you are not, or by what is wrong with you? Why define yourself in a negative way?

There was a student at my college who had a chronic illness. But unlike me, this person definite him/her self (yeah, I'm being really vague, here) by the illness. It was the first thing his professors knew about him. It was the thing she led with. 

This repelled me. My professors didn't know anything about my health until I was in the ICU for two weeks and I was missing class. Then I  (well, my parents) told them. 

Sure, there are things that I can't do. But why would you define yourself that way? "I can't do differential equations." "I can't spell." "I can't swim." Why in the world is any of that important? 

I'm not tossing out the old rag "everyone can do whatever they want!" "You can be anything you want to be!" Because that's crap. It's not true. I can't play in the WNBA. I can't be a swimmer like Michael Phelps. I can't be a prima ballerina. 

Everyone has limitations. It's part of life. None of us are perfect. But why you would lead with that, or make that the focal point of your life, is beyond me. I don't get it.

Is this part of me? Well, yeah. It's a part of me like my hair color or my eye color or my height. But I don't let those things tell me who I am, and that's not what I lead with at a party. 

Pre-transplant, I never really talked about my CF in public at all. Now, I do it because I want to spread awareness of organ donation. But I also think that's there's a fine line between talking about it/raising awareness, and over-talking it to death, and making it the KEY POINT IN EVERYTHING. 

If I could tell parents of kids with chronic illness one thing, it would be to let your kids live their lives as normally as possible. Don't coddle them. Don't make them afraid of life. Don't baby them. And also--tell them that they are more than the strange outcome of their genetics or malfunctioning cells. Yes, they might need some accommodation. Yes, they might not be able to do everything everyone else in their class can do. But that doesn't make them less. Don't define yourself by your limitations. 

Yarn Along No. 45

So, here we are, back to the Wednesday Yarn Along!

I'm on the second book of the Mitford series, and I'm really liking them. They remind me of Alexander McCall Smith's books--everyday happenings, people living lives in their small towns, but you can't stop reading about them and immersing yourself in their world. Mitford is the American version of the Gabarone or Edinburgh of McCall Smith's stories. 

 (And yes....using up that washcloth yarn!) 

Seven Quick Takes No. 105

I. 

The snow is melting! The snow is melting!

Really, I don't mind snow--around Christmas. I do mind it when it's crazy cold and I have to scrape off my car whenever I want to go somewhere, and deal with the ice around my car. But it's going to be 50 today, and almost 60 tomorrow! Yay!

II. 

I'm glad about that 60 in particular because tomorrow is the Columbus Catholic Women's Conference, and last year a huge snowstorm kept me from getting there. It starts at 8, but you have to get there early to get a decent seat--and registration opens at 7. So that means you get up early. And getting up early plus dealing with snow? Just, no. But this year, no snow! No ice! Yay!

I'm especially excited because Jen Fulwiler is one of the speakers.

At Edel with Hallie Lord (L) and Jen Fulwiler (center)

III. 

This week I went to my audiologist and got my cochlear implant (CI) tuned up. That's not the technical term, by the way. I hadn't been to see her in awhile, so I went it and we "reprogrammed" my processor. 

The big difference between a CI and a hearing aid is that a hearing aid just makes sound louder, while I CI helps you understand what the sound is. And if you're like me, and your hearing is basically shot, you need the CI, and not a hearing aid, becaus making sound louder won't help you. The cells in the cochlea have been destroyed, and thus the sound isn't getting processed correctly by my brain. Thus--the CI. An "array" was threaded into my cochlea during surgery, and that relays the sound I get directly to my brain, bypassing the broken bits. 

So anyway, with the programs, I can have various settings depending on what I need at the time. I generally use one that allows me to get a wide array of sounds, but there are ones for when I want to focus on quieter sounds, or when I want to focus the microphone to just the person or people directly in front of me (meaning, where my head is pointed is where I'm going to pick up sound.) 

After we fine-tuned the programs (they're called MAPS, if we're being technical, but I forget what that stands for), my audiologist took me to the booth where they run hearing tests. If you are hearing-impaired, these booths are generally awful because you feel like an idiot. But with the new program, I was able to hear a really wide range of sound at various levels (meaning I detected the sound--I could hear it at all) of pitch and volume. So yay! 

IV. 

The other thing about CIs? They're covered by insurance. Hearing aids aren't. 

V. 

I've been doing a TON of drawing this week. Bust out the paints and pencils! 

This is my Atlantic Puffin. I didn't get quite the result I wanted on the black parts, but I did it on watercolor paper, which has that grain. So, whatever. But how cool is this animal? Orange eyes!

I'm also working on sketching and painting teacups. I need to take some pictures of those, though, to show you. 

VI. 

Reading: Not a whole lot, sadly, other than my Lent books. But when one gives up book buying for Lent...also, the library hasn't had any interesting books on the ebooks roster lately. I love that you can borrow ebooks. No worries about returning things on time!

VII. 

This week in CCD we're doing Sacraments--we've broken them up into parts. The book does a chapter on the Eucharist when we talk about Holy Thursday, so that's coming up. This week we're covering Baptism, Confirmation, and Holy Orders. Next week: Marriage, Confession, and Anointing of the Sick.  

Hitting Rewind

So, 2016 started out with me being sick, but I could still make progress on my goals. 

Then we got a week in to 2016, and that all went out the window. 

I'd forgotten how much pneumonia takes out of you--the whole if I try to get dressed/put on make up/make a meal, I spend the next day wiped out and paying for it. I am feeling better, in that there's much less pain, I can breathe regularly, my heart rate is better, and I can take deep breaths! I'm sure my PFTs will be better on Monday. But as far as "normal activities", not a lot is happening yet, beyond the basic basics. 

That's OK--it just makes my goal tending Powersheets page look a little forlorn, these days. :) 

I go back to clinic on Monday for a follow-up, and assuming we don't see anything terrible, I will slowly start increasing things. But that, I don't just mean activity, I mean daily things, like writing/editing/reading--things that don't sound terribly strenuous, but can be when you're dealing with a limited supply of energy. 

One thing that has progressed, so far, is my art--I'm really glad to have decent brushes now, and to be playing with color and form. I will finish my Sketchbook Skool class by the end of the month, and that was one of my goals for this month, along with editing Tempest (and I did that, too--at least a first pass edit.) So this month wasn't a complete waste, goal-wise. 

And this might sound odd, but--the nurses I had in the hospital were pretty great. I don't mind spending time with good nurses. :) 

So I'm going to ease back into goals next week, and start February with renewed vigor--and hopefully a rescheduled California trip!