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. :) 

Thoughts on The Great American Read

Let's talk books!

Summer is a great time to talk about books, but this year it's especially so, because PBS has come out with the The Great American Read. It's an eight-part series on PBS that talks about the "100 best" American books--but this is where it gets confusing, because it's not 100 books by Americans, and it's not the most influential books--it's 100 "best-loved novels (as chosen in a national survey)." 

So, here are my thoughts: 

• I've read 54 of them. I've linked to the list above. Obviously, I am thrilled Pride and Prejudice is here--go America!--but I'm shocked that there's no Shakespeare. There aren't any plays at all. BOOOOO. 
   
• Some of the books I love, some are meh, some I hate, and some I would never, ever read (DaVinci Code, looking at you). If you're curious, my love list is: Anne of Green Gables, The Giver, P&P , Book Thief, Narnia, Rebecca, Charlotte's Web, Grapes of Wrath, Harry Potter, Hunger Games, 80% of Jane Eyre, Little Women, Memoirs of a Geisha, Outlander, To Kill a Mockingbird, The Sun Also Rises, and Wuthering Heights.
   
• Books on the list I hate: 100 Years of Solitude, Moby-Dick, The Lovely Bones
   
• Some of these are clearly "hot" books that people are currently reading or have been popular: Twilight, Ready, Player One, Fifty Shades of Grey. These are not books that will last, I'm willing to bet. 
   
• I would like it very much if everyone would read 1984 and The Handmaid's Tale and then write papers about the two. And then realize that we do not live in the world of Handmaid's Tale. (Hulu, looking at you....)
   
• There are books on this list that I need to read: Catch-22, War and Peace, Call of the Wild, and Crime and Punishment. (Well, I have to finish Crime and Punishment.) I gave up on Don Quioxte because the book itself is Quixotic. :-P
   
• Conversely, books I will never touch with a 39 and a half foot pole: DaVinci Code, Fifty Shades, Left Behind --because it is vehemently anti-Catholic-- and The Shack.
   
• No Henry James, Edith Wharton, or Nathaniel Hawthorne? I think The Scarlet Letter is MUCH better than Moby-Dick, personally.  

How about you? Which of these have you read? Do you have a favorite? Any you're meaning to read? 

A Wedding

He's married. And so is she! I have a new sister! 

My brother's wedding was lovely, and glorious, and so much fun. Everything about it spoke to the personalities of the two people involved, and the love that God has given them. The Mass homily was especially great; the deacon, who had prepared them for marriage, spoke about the graces we all received just by attending the Mass, and the graces God gives us all for our state in life. 

The joy really did overflow. It was a great party. The rain was spotty, and then gone, so we were able to take photos in the garden of the reception location, and also bring the party onto the deck that came off of the main room. Seeing so many family members and friends made it even better, especially friends of my parents that I haven't seen in ages. 

In Gone With the Wind, Melanie Wilkes says that the happiest days are when babies come. I think the second happiest days have to be when two people who are clearly so well-suited for each other get married. 

Bubby

My brother was the sibling that made me a big sister. 

I remember the day he was born very clearly. Mom and Dad bundled me off to Laurie's house (a friend of theirs) in my Grover nightgown, and I slept in one of the boys' beds (they have three boys), until Laurie and Barry (her husband) woke me up the next morning. 

"You have a baby brother!" They told me. 

I stood in their bedroom, rubbing my eyes in the morning sunlight and sort of grumpy.

 
"I wanted a sister," I grumped. 

Well, I got my sister four years later. And I was glad to get her. But I've really, really enjoyed having a brother like Bryan, who is unfailingly upbeat, friendly (EVERYONE seems to know him), supportive, totally giving of his time, great with kids, a sports fanatic (which has served him in good stead), and one of the most cooly collected people I will ever meet, which definitely serves him well, and which I envy. And he's just adorable and sweet. Which I probably shouldn't say because it's not "manly", but it's true, and it's a great thing, in my opinion. He's incredibly creative, with a great sense of humor. And he's strong--which is great to have in a brother, because you can use him for heavy lifting (kidding, sort of)--but also mentally, which serves him in good stead as a runner. (I like to brag about his marathon-running. Kid's run Boston and New York (twice).) 

We weren't always this close. In fact, when we were kids, we were downright feral towards each other, pulling hair and scratching and generally fighting a lot. It really wasn't until I went to college that we became good friends, and I'm glad we did, eventually, because I just love him to bits. (So, parents reading this--if your kids fight when they're little, that doesn't preclude them being close as adults!) 

And he's getting married. Isn't he still five? Wasn't I just reading Go Dog Go! to him?

Apparently not. 

I'm so proud of you, Bubby. You're going to be a great husband. And I love the woman you've picked to be your wife. I'm so glad Sarah is joining the family!

(Yes, we call him "Bubby." I have no idea why. It's the shortening of a VERY long nickname we came up with for him when he was a toddler. That's a family secret. ;-) ) 

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! :) 

Yarn Along No. 76

It's May, and that means--Yarn Along with Ginny!

So I've been finishing a commission for Barton Cottage Crafts, but for my own knitting, I'm working on the Skye Cowl from Quince and Co., with their Puffin yarn. (My ravelry page here) I'm using the sorbet colorway, because I wanted something fun. 

Yes, my nails are terrible. Sorry. 

Above, the project is with the Magnolia Table cookbook (birthday gift), and I've been reading various things all month--the spring Bella Grace, which is a great magazine, Ann Voskamp's The Way of Abundance, and the fifth Outlander book, The Fiery Cross. So I'm all over the map. 

And, Barton Cottage Crafts (my little knitting shop) is taking commissions! I do the basketweave scarves, shawls (basic ones), and plain garter stitch scarves. You get to pick the colors for anything you commission, obviously. Plain scarves are $30, basketweave's are $35, and shawls are $40. That price includes shipping!

I don't have a good picture of the "plain" scarf--bad me--but it's really lovely. I use Quince's osprey yarn, so it's very plush and squishy! 

If you'd like a commission, contact me and we'll get started! 

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.

Introducing Ponder!

I have always loved the rosary. My family introduced me to it very young--I remember praying the rosary with my dad and siblings on the way to school in the mornings, and we said the family rosary sporadically. All of us had multiple rosaries hanging from our bedposts. The rosary is my go-to prayer; it's what I asked my family to pray when I was in transplant surgery. My father has a special devotion to Our Lady of Fatima, so that could be why we're all rosary nuts. There are rosaries in our cars, in our purses, in our pockets. 

So when I heard that Take Up & Read was doing a rosary study, I totally did a happy dance. 

A lot of people are confused by the rosary. What is it? Isn't it just mindless repetition? And why are you praying to Mary? There are lots of misconceptions about it. That's why I'm so glad this beautiful book exists--to show how Scripturally based, and Christocentric, the rosary really is. 

Enter: Ponder. 

This book is beautiful. I mean, it really is. You can see that here. Katrina Harrington, of Rose Harrington, did the cover art and all the beautiful interior illustrations. Our calligrapher, Rakhi McCormick (of Rakstar Designs), did all the glorious interior lettering, and our design chief, Kristin Foss, made it all elegant and readable with her imitable design. 

But oh my goodness, the essays. And I'm not talking about mine (although I have two, and I am crazy blessed and excited to be in this book!)--really, guys, you will love them. They are perfection. 

So this book is really close to my heart. It's about a devotion I love, put together by lovely people, just in time for Mother's Day! In fact, we start the study on Mother's Day. 

There will also be a group guide and a kids' version! 

Every week includes: 

• Scripture study Monday through Friday, with verses, lectio pages, and a devotional essay about that day's mystery.
• Saturday "Selah" days, where we invite you to pause, reflect on the week's pages, go back and read more, or just sit with your journal and ponder what you've written and read. 
• Sunday Scripture memory verses which channel the flavor of each set of mysteries and invite you to memorize Scripture so you can ponder it in your heart, just like Mary did, at any time. 
• Floral coloring pages of flowers with Marian symbolism
• A "how to say the rosary" graph
• An essay on lectio divinia--the heart of our studies!

I heartily invite you to come and join us as we spend May and June looking at the rosary, this beautiful devotion that is the favorite of so many saints, and that St. Padre Pio called "the weapon." 

You can get your copy here! 

Thirty-six

I love birthdays. 

I especially love birthdays you weren't supposed to have. Seriously. Thirteen extra birthdays since my transplant! Yayyyy!!!

Thirty-six sounds sort of old. It's not, really. But it sounds that way. I did like being thirty-five. That, and seventeen, were always ages that sounded good to me. (Do you have ages like that?) 

So, my birthday was sort of low-key. My parents took me to Chuy's, and we did a little bit of shopping. I got a Manduka PRO mat for my yoga practice, and I love it. So worth the money (and yay REI member coupons!). I think it's really helping my practice so far. We also went to David's Tea and I got some yummy tea goodness, including my "cake"--their birthday cake tea infused chocolate bar, which I shared with my parents. It was yummy! (I adore their birthday cake tea as well) I also went to Kendra Scott and picked out earrings to wear to my brother's wedding next month. And of course, there were books: Force of Nature * and Unmasked*, because I love Andrew Lloyd Webber with all my theater-loving heart, and I'd been wanting to read Force of Nature for MONTHS. 

My brother took me to dinner (Red Robin, free burger on your birthday!), which was delightful. 
So it was a good day, a good week. (Birthday flowers unexpectedly arriving make any week a good week!) 

Later this week I'll be talking about Ponder *, which is available on Amazon and is SO GORGEOUS. I have two essays in the book (The Preaching of the Kingdom and The Agony in the Garden), so of course that makes it really special for me, but it's gorgeous in every way. So I'll share more with you about that later this week! 

*=affiliate link

Save Lives--Be an Organ and Tissue Donor!

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

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

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

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

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

Imagine that for a second. 

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

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

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

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

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

You can do it here!

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

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

Stitch Fix Box No. 5--what happens when you're not happy with your stylist

So, welcome to my Stitch Fix for April!

If you're new here and haven't read these posts before, here's a quick summary of what Stitch Fix is: 

Stitch Fix is an online styling service that delivers a truly personalized shopping experience, just for you. Fill out your Style Profile and a personal stylist will hand pick pieces to fit your tastes, needs and budget—and mail them directly to your door. Each box contains five items of clothing, shoes and accessories for you to try on at home. Keep what you love, send the rest back in a prepaid USPS envelope. Shipping and returns are free—even for exchanges!

The Style Profile is really detailed--it's just not stuff like your weight and height. They want to know as much about you and your style as possible, from how much skin you like to show, to your proportions, and what kind of trends and styles you'd like to try. You can even set a price range for individual categories and ask them not to send certain things. For example, in my Style Profile, I ask for no bracelets, rings, or just about any type of shoe other than a flat or heel. 

There's also a place to add a link to your Twitter, Facebook, Instagram, or Pinterest Style Board, so your stylist can get a feel for what you like. Finally, there's the "style note", where you can ask for specific items, talk about events that are coming up (I mentioned my brother's wedding in the spring), or generally discuss your style or anything you'd like to see in the box. 

So, after you fill out the Style Profile, you will pay $20 as a styling fee. This is taken off any items you decide to keep in your Fix, so I look at it as a down payment on whatever's in the box. Keep in mind that a real person will personally select all five items that come in your box for you, based on what you've told him/ her. 

OK, so let's talk about this month. 

First off, I wasn't too thrilled with my stylist this time. I wasn't last time, either, really. You'll see why in a second, but I just wanted to say that, going in, I was not best pleased with what my stylist had sent me. 

I had asked for two things: a kimono--because I love this trend--and some tops, because I don't have a lot of good summer tops.I wanted more casual or versatile tops, and maybe I wasn't clear enough there. But...let's get to the clothes. 

Number 1: 41 Hawthorn Prinsloo Ruffle Neck Blouse, $58

OK, this isn't terrible. It's a little pale for me--with my skin tone, it's really easy for me to look washed out. My biggest problem with this was how sheer it is. You can see my belly button! Also, it's a little fancier than I'd normally wear for day to day stuff. 

Verdict: Returned. 

Number 2: Skies are Blue Bradie Embroidery Front Knit Top, $54

This one I loved. I love the intricate embroidery, the colors, the lovely fabric, and the fact that I could easily dress this up or down. The lace in the back also camouflages my bra, but if I wore this out to church I'd just toss a cardigan over it. Since there are so many colors in the top,  I can pick a bunch of cardigans from my closet to go with this. Home run. 

Verdict: KEPT

Number 3: 19 Cooper Nicole Flutter Sleeve Wrap Blouse, $58

I originally really liked this. I love wrap dresses so I thought a nice wrap top in a fun color? Yes!

Sadly, every time I moved my arms, you could see my bra. Like really see it. The tiny snap that was supposed to keep it closed didn't do its job at all.

Verdict: Returned

Number 4: Collective Concepts Talmadge Tie Front Cotton Top, $58

This was where I started to lose patience with my stylist. I have said many times that I don't want attention drawn to my middle. And that's all that this shirt does. Also, I would never wear something like this, ever. I don't wear shirts with crazy parrot prints; I don't live in Margaritaville. 

Verdict: Returned

Number 5: A Romper

You're not even going to see this one on me. 

When I saw this, I was SO displeased. I had told my stylist I do not wear shorts. I don't wear anything really revealing. This was shorts, and revealing, and so unflattering! I tried it on quickly and saw how awful it was. 

This is where I got upset and was pretty blunt in my review. I rated this a "hate it"--I hated everything about this. You can rate your clothes when you check out. Your options are hate it, it's OK, like it, love it. I HATED this. You use the same criteria to rate fit and style. This way, the stylist learns what you liked and didn't like about each piece, hopefully to apply that knowledge in the future!

Honestly, this fix was not really me at all--and that's another question they ask. I had given this stylist three tries to get it right, and she hadn't really. So when I rated it a two, and they asked me why, I said because my stylist didn't listen to me. 

Fortunately, the next screen then told me that I was getting a new stylist next time. I also received an email this morning saying they were sorry for the bad fit, and that they hoped the next one would be better. 

I hope so too, Stitch Fix. Just to be sure, I went through my profile and made sure it was VERY clear about what I like and don't like. And it is! I hope that my new stylist reads it, and looks at my very detailed pinterest page! 

So, I'm glad that Stitch Fix heard me and responded to my criticism by reassigning me immediately. But we'll see what the June box has in store for me. 

(In case you're curious, here's a list of things I will not wear: 

• stilettos
• shorts
• anything that doesn't allow me to wear a bra
• ponchos
• dolman sleeves
• pencil skirts
• blazers (I hate the way I look in them, but I love how people wear them!)
• anything yellow. (I look terrible in yellow)
• Anything ripped/distressed
• Cold shoulder tops

Basically, if Duchess Kate isn't wear it, neither will I. (Except the shoes. I am in awe of how she can walk down airplane steps, holding a baby, in 3" heels. In awe.) 

Yarn Along No. 75: Back to basics

So, after finishing the shawl, I wanted to go back to basics, this is about as basic as you can get--a garter stitch scarf in a nice, squishy yarn. This is Quince and Co.'s osprey in winesap, which is just a gorgeous true red. I adore it. It's really relaxing knitting. No pressure, no difficult pattern, just knitting with beautiful yarn. 

The next project I'm working on is their Skye cowl, so I can work a project in the round. It's basic stockinette stitch, and I wanted something basic to ease me into a new technique. Once I knit this, I have some plans for other cowls, with other lovely yarns. 

Also: Barton Cottage Crafts is open for orders! Basketweave scarves, shawls, and even this scarf are available. You can choose your color. Shipping is included in the price. This scarf is $30, basketweave scarves are $35, and shawls are $45. Drop a note in the comments if you'd like to talk about an order! 

Some birthday gifts

As for what I'm reading: Birthday books! I read Force of Nature and Unmasked over the last few days and I'm into The Bronte Cabinet, which I'm really enjoying. It appeals to my English Lit Geek Nature. The book discusses the lives of the three Bronte sisters (Charlotte, Emily, and Anne) within the context of nine of their possessions. Really intriguing. 

2018 Goals: March update and April goals!

So, if you're new to this, I use powersheets to set my goals. I love Powersheets! You can catch up on this year's series by going here. 

March was the longest month. It really was! But there was progress made in some areas!

Goal Number 1: 

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

March goal: Finish baby step one--get an emergency fund in place. 

Status: ACHIEVED! Guys, I am so proud of this. And it was so enjoyable to know that, when I was having computer issues earlier this month, I could go to the store and know that if it needed repairs, I could pay for them! This fund also allowed me to replace part of my Bionic Ear without freaking out. 

April goal: Start baby step 2--also known as the Debt Snowball. This is where you list all debts, smallest to largest, and start to pay them off, by moving as much money as you can toward to the smallest debt. Once that's paid off, that money + the minimum payment for the second debt goes to the next debt....you see how this works? I will have the first part of the snowball done by this fall. Yay!

Goal Number 2: 

Find an agent for my manuscript

March goal: At least one two-hour block of time outside the house working on my proposal. It doesn't have to be finished. But I have to dedicate at least two hours to drafting one. 

Status: yeah...no. AGAIN!

April goal: GET IT DONE. And I've already started! I've written out the basics of a proposal and now I just have to tweak/re-write the sample chapters. I am ON IT. 

Goal Number 3:

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

March goals: Weekday Mass once a week, confession once a month, holy hour, daily vespers (evening prayer).

Status: Everything but that weekday Mass--because every time I tried to go, there was no place to park. I'm not kidding. So I tried, God! But I did get in a holy hour and daily vespers. Confession, no go either...I wanted to go wen I went to Mass. Face to face confession is offered at my parish on Fridays, which was the day I wanted to go to Mass as well. But no parking. Sigh. 

April goals: confession, holy hour, Mass once a week! 

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. 

March goals: Daily yoga glo classes, weekly meal planning, go to bed by 10:00 (be IN bed, not necessarily asleep). 

Status: I did REALLY well here. I attended a yoga glo class almost every day! The meal planning was OK, as was the bed thing. 

April: Focus on healthy snacks, regular workouts--yoga glo strength courses, continue meal plan. 

Goal Number 5: 

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

March goals: Keep trucking. :) 

Progress: I finished my drachenfels shawl  and am almost done with a current commission. That means that BCC is open for new work! If you'd like a scarf or a shawl, please contact me and we'll talk! I can do them in solid or variegated colors. Shawls at $45, and scarves are $35, and shipping is included! 

April: finish new projects (I have two that I want to knit), get more commissions!

Goal Number 6: 

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

March goals: ZERO OUT (with alarm at 9 pm); zone clean weekly; weekly surface clean; contentment challenge; finish Emily Ley's simplify challenge! 

Status: Zeroing out just isn't me....I sort of tried but it doesn't work. I'd much rather come down in the morning and clean a bit. So that's what I switched to. I'm in zone cleaning weekly, and doing the weekly surface clean. 

The Contentment challenge is almost done!

The biggest thing I did this month: 

Sorry it's blurry!

This was a terrible corner on my first floor. I hated it. I had no idea what to do with this empty space. 

So I was sick of looking at it, and went on an organizing spree. I dumped my old stereo that I NEVER use from my book case, and added a new shelf of "favorite books". That gave me more space in all my bookcases, yay!

Then I went on the IKEA website--motivated by a birthday coupon--and looked some something that would fit here. KALLAX would! KALLAX is pretty!

KALLAX IS HEAVY. I had to open the box and take the pieces in piece by piece. :) After an hour, I had entered in the realm of adulthood, because I had put together a piece of IKEA furniture. 

And now, behold!

Isn't that much better? 

So, for April: My goal is to get another one of these units to go in my living room, to hold some other things that are currently being "stored" crappily. :-p I will also continue weekly cleaning (both detailed and surface). But I want stuff up off the floor. I'm tired of living like a college student! :-P 

Goal Number 7: 

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

March goals: Shawl--finish? Maybe? Continue Artist's Rule. 

Status: DONE, on both counts! Yay!!!!

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

Progress is happening on the first project: 

It's a really simple project, but I love this yarn. I'll talk more about these in the next yarn along. 

So, March had ups and downs. But it also had some great progress!

Yarn Along No. 74: Drachenfels!

My shawl is off the needles! 

It's not finished, because I have to block it, and I can't block it until my eucalan order comes--no one in Columbus sells it, apparently--so I'm waiting for that. Blocking is where you wash your finished object and then shape it on blocking boards. Some pieces require extensive blocking, but this is going to be pretty gentle. (Here's a good post on how to block, if you're interested, or looking for a how-to for your own knitting projects.) Once it's blocked, I'll show you the final product as well. 

This took me about three months to do, start to finish. The yarn was a Christmas gift, I started it a few days after Christmas, and I was working on other commissions during that time, so that affected how long it took. If this was my sole project, it might have taken a month off the finish time. I really enjoyed this pattern and am already thinking about color combinations for the next one! 

(Whoops! Forgot to link to Ravelry! This has all the details and my notes.) 

But my next two projects are going to be much simpler: Puck's Scarf from Quince and Co., and then the Skye Cowl (partially because Outlander, and partially because I want to learn to knit in the round, and this will be a good starter project). 

Stop waiting around

Trivia night victors! 

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

Bookshelf: World War II Books

Bookshelf is a new series that will focus on books that cover a particular topic or time period. I'm trying to recommend only books I've read, but sometimes I'll throw in recommendations from my friends and family members! 

Today we're talking about World War II books. Unless you're my mother, who is a WWII nut, you are probably rolling your eyes. Every other book that comes out seems to involve WWII, even tangenitally. I'm a little burned out, myself!

But a friend of mine asked me for book recommendations about this time period, for kids and adults, and fiction and non-fiction, so I thought I'd comply, and list the good WWII books I've run across. 

Non-fiction

(I would recommend these for middle school and up. I read The Diary of Anne Frank young, and we read Night and Farewell to Manzanar in eighth grade.) 

• The Hiding Place, by Corrie ten Boom. This is one of my favorite books--I read it at least once a year. Corrie ten Boom and her family were part of the Dutch resistance, hiding Jews in their Haarlem home and procuring ration cards for Jews in hiding. Eventually, the family was arrested, and Corrie, her sister Betsie, and her father were sent to prison, and, eventually, the Ravensbruck concentration camp. The deep Christian spirit of the ten Boom family pervades the book, and that is what makes it stand out to me. Corrie isn't a paper Christian--her struggles are real, and she discusses them frankly. This would be a great book for family discussion with older kids, too. 

• Farewell to Manzanar, by Jennie Wakatsuki Houston and James D. Houston. This book is different from all the others, in that it focuses on the internment of Japanese-Americans on the West Coast during WWII. Jennie, age seven, and her family were sent to Manzanar relocation camp, in the desert of California, during WWII. Their crime? Being Japanese-Americans. Jennie tells her story, beginning before the war, taking us through living in the camp, and ending with her family's release and attempt to settle back into "normal" life after their experiences. (A good book to dovetail with this, for younger kids, is listed in the next section.) 

• The Diary of Anne Frank, by Anne Frank/Otto Frank. Really, the quintessential WWII book. You have to start with this, I think. Anne's story has been made into movies, a stage play, and the house is preserved as a museum in Amsterdam, but this is the book that lead to all those. Anne's diary begins shortly before she and her family go into hiding, and ends a few days before they are arrested and sent to the concentration camps. Otto, Frank's father, published the diary after he returned to Amsterdam following his imprisonment. 
   
• Night, by Eli Wiesel. Wiesel relays his account of life in a Romanian town before WWII, the arrest of himself and his family, and his experiences in the Auschwitz and Buchenwald concentration camps. 

Never shall I forget that night, the first night in camp, which has turned my life into one long night, seven times cursed and seven times sealed. Never shall I forget that smoke. Never shall I forget the little faces of the children, whose bodies I saw turned into wreaths of smoke beneath a silent blue sky. Never shall I forget those flames which consumed my faith forever. Never shall I forget that nocturnal silence which deprived me, for all eternity, of the desire to live. Never shall I forget those moments which murdered my God and my soul and turned my dreams to dust. Never shall I forget these things, even if I am condemned to live as long as God Himself. Never.

--Night

• Unbroken, Laura Hillenbrand. A different book--this tells the story of Louis Zamperini, an Italian-American from California who competed at the Berlin Olympics, and then joined the armed forces as an airman. When his plane crashed over the Pacific, Zamperini and his crewmate survive--only to be rescued, weeks later, by the Japanese, and sent to a Japanese prison camp. 

Fiction: children/YA

• The Molly series (book 1 and book 2), by Valerie Tripp. One of the classic American Girl stories--if you can find the original books, those are much better, especially for historical content in the back as a supplement. If you can't, the stories are still great. Molly lives in Illinois during WWII--her father is an Army doctor. On the home front, Molly's mom works at the Red Cross; the family has a victory garden; Molly and her friends participate in several events to help the war effort, and Molly's family takes in a British girl, Emily Bennet, whose family lives in London. The stories are rich in historical details, and Molly is a fun character. 

• The War That Saved My Life and The War I Finally Won, by Kimberly Brubaker Bradley. Ada and Jamie live in London with their mother, who hides Ada in their rundown apartment because Ada has a clubfoot. When the Blitz starts, her mother sends Jamie off to the country to stay safe--and Ada sneaks away with him. They are assigned to live with a woman named Susan, who is reluctant to take them in at first. These stories aren't just great for their historical content, but also for the character of Ada, whose stubborn determination drives the stories.

• Number the Stars, by Lois Lowry. Annemarie lives in Copenhagen with her little sister, Kirsti, and her parents, and enjoys going to school and playing make-believe with her best friend, Ellen, who lives in their apartment building. But Ellen is also Jewish. When her family hears of the plan to arrest the Jews of the country, Annemarie's family takes in Ellen. Can Anne-Marie's family save her best friend's life? This story is compelling, beautifully written, and is one of my favorite books, period--I re-read it a lot. I highly recommend it. Lowry won the 1990 Newberry Medal for this book. 
   
• Dear America: The Fences Between Us, by Kirby Lawson. To dovetail with Farewell to Manzanar, this story is the diary of Piper David, a "PK" (preacher's kid), whose father's Seattle congregation is made up of mostly Japanese-Americans. When most of them are sent to a relocation camp in Idaho, Piper's father announces that he is going with them--and is taking Piper. 
   
• Dear America: Early Sunday Morning, by Barry Denenberg. Amber's family moves to Hawaii for her father's military job--he's assigned to Pearl Harbor. Her diary covers the months before, and after, the attack on Pearl Harbor. 
   
• Dear Canada: Pieces of the Past, by Carol Matas. Rose is a Holocaust survivor who is living in Canada with various guardians. Her diary relates her experience of arrest, living in the camps, and trying to survive and rebuild her life in a new country, without her parents, afterwards. 
   
• The Book Thief, by Markus Zusak. Liesel, a young German girl, is sent to live with a new foster family, Hans and Rose Hubermann. Distraught at the death of her younger brother, Liesel finds solace in books, as well as in the freedom fighter, Max, that the Hubermanns hide in their basement. A fabulous story with an...interesting narrator. 

Fiction: adults

• The Nightingale, by Kristin Hannah. Hannah details the lives of two sisters, Vianne and Isabelle, who live in German-occupied France. The two sisters are estranged from their father, and from each other, and both must do what they can to survive the war. I don't want to spoil it, but let's just say it's worth reading, and is based on the life of a Belgian woman. 

• Lilac Girls, by Martha Hall Kelly. Based on the true story of "The Rabbits", Lilac Girls follows three women: A Polish teenager, Kasia, who is involved with the resistance; Caroline, a New York City socialite who works at the French consulate in New York City, and Herta, an ambitious young German doctor. All three of these women collide in a memorable story, based on events that most people have probably never heard about. 

• La's Orchestra Saves the World, by Alexander McCall Smith. Lavender, or "La", moves to the Suffolk countryside to escape both the Blitz and a horrible marriage. In her tiny community, she decides to start an orchestra to bring the people together against the ravages and fear of WWII. She also meets a Polish man named Feliks, who will end up having a far-reaching impact on her life. 
   
• Everyone Brave is Forgiven, by Chris Cleave. Based on the experiences of Cleave's grandparents, the novel is set during the Blitz and the Siege of Malta, and follows two people: Mary, in England, and Tom, who has decided to ignore the war, until his best friend signs up--and then he can't ignore the war anymore. 
   
• All the Light We Cannot See, by Anthony Doerr. Winner of the Pulitzer Prize, the novel follows Marie-Laure, a blind girl who lives in Paris with her father, and Werner, a German orphan. Marie-Laure and Warner's stories collide in Saint-Malo, a town on the French coast, in 1944. Doerr's storytelling is intricate and absorbing, with great attention to detail and plot. 

All links are Amazon affiliate links

It's Survey Time!

I've been writing for a few years now, and I think it's time to do my first-ever reader survey!

I want to know what you like to read about here, what you don't like to read about, things you wish I wrote about....really anything. This is your chance to tell me your opinions!

So just go here, and fill out the survey! Thank you muchly! 

Sound and Silence Part IV: Accommodations

Last Saturday was World Hearing Day, so I showed a few shots of my Bionic Ear on instagram. Some people were shocked to see I had one! So I decided it was time to do a little updated series here about why I have one, how I got it, how I like it, and what life is like with one. Here are the previous parts: Part 1, Part 2, Part 3. 

This is the meat and potatoes post. 

First, let's acknowledge that deaf and hard-of-hearing people are often not accommodated. Curb cuts are put in at corners, even when there are no sidewalks. Braille on signs is ubiquitous. (although I know blind people often need things they don't get--like audible crossing alerts!) But captioning has to be fought for. The ADA doesn't require TV stations to caption things unless they get federal funding, for example. 

So the first thing people like me need to do is ASK. And that's hard, I know. But we need to be more comfortable about saying, I'm sorry, I'm hearing impaired. I need accommodation. If we're not asking, we're definitely not going to get! 

With that in mind, knowing what we know now, how can we, as individuals and society, accommodate or adapt what we do for people with hearing loss? 

Here are a few suggestions. Some are for people, some are for institutions. 

1. Be patient. I talked about this in the last installment, but please repeat yourself if you're asked to. Don't get angry. Also, you don't necessarily need to talk louder. Sometimes you need to be clearer. As in, speak slower, enunciate, look at me. Don't hide your mouth! It doesn't necessarily have to be over the top. It might take some adjusting. But please be patient. 

2. Provide alternate means of contact. If you run a church or volunteer organization, for example, don't just provide a phone number. Provide an email address. If you just provide a phone number, I can't contact you, and then I can't help out. Say if texting is acceptable, too! (This last tip is for older people, who might have landlines only. Tell me if it's a cell number. If it is, then I'll try texting.) 

(And a note: I can leave messages on voice mails. That's because I know to leave a message at the beep or when the voice stops. That's different than trying to talk to a person. Does that make sense?) 

3. Provide a chat interface. This is mostly for businesses. If you only provide a phone number, I am screwed. And don't say, "Oh well we have a TTY!" I don't have a TTY.  It's $250-600 for a TTY. Also, TTY use in general is declining as people have email and text. Folks. Come into the 21st century. Provide a chat interface on your website! (It's like how cars had tape players in them well into the early 2000s. Huh? A tape player? What?) Chat interface, the ability to place requests on a website (like AAA!), customer service email, apps....it's a wonderful new world of technology. Use it. Please. Look, if Bobbi Brown Cosmetics, The Disney Store, AAA, and just about every other e-commerce site can provide a chat interface, you can too, government people! 

And do not tell me that it's not secure to do it any way but over the phone! I email my transplant nurses all the time for stuff--we're sending highly "private" health information over email. My bank has chat. I send sensitive financial information over chat! Come on! Don't tell me that the retirement agency or SSDI or whatever can't do the same thing. You can. You're lazy. That's what it comes down to. You. Are. Lazy.  Don't be lazy. 

Let me illustrate what happens when you are lazy, companies and agencies: 

It means that I have to ask my parents to translate the conversation for us. It means that I have to fill out paperwork saying that yes, my parents are decent people and aren't going to lie to you about me. It means that I can't communicate with you on my own. It means that we have to set up times for me and a parent to talk to you, so that we can get something done. This means that my dad has to leave work early, or work from home, or leave for work late, so that he can help me here, or that my mom has to rearrange her day. It is a HUGE inconvenience to everyone. 

If you provide chat interface, then we have none of these problems. It's all easy. And simple. And, dare I say, secure. (My dad is an IT professional. He deals with this stuff all the time. He knows. He can tell you the whole "It's not secure" argument is crap.) 

4. Provide transcripts or closed captioning. If you're doing an online course, please provide captions or a transcript of what you're saying. 

Video is tough. The sound isn't great, a lot of the time. The best way for me to understand someone, in general, is for me to "learn" your voice, and the easiest way to do that is to read captions while you talk. (Obviously, this is not in a real life scenario. :-p In real life, the more I listen to you, the more I learn your voice, your cadences, your vocabulary, and that helps me understand you better.)  But until you get to that point--caption videos, or provide transcripts. 

Also, video companies? Caption ALL THE THINGS. Don't just caption the movie. I like to watch the special features! And it should be illegal to release a video in the U.S. that doesn't have captioning. I mean, come on. TVs do have captioning--most of them. Some older ones don't. But that doesn't mean that they automatically caption videos or TV shows. They do not! 

TV and movie folk: please caption your shows and your channels. Some of you don't. That means I can't watch you. Fix that, please. 

5. Turn the captions on! If you're in charge of a waiting room, please turn the captions on the TV. It is so annoying to hear just mindless sound. Imagine a jackhammer going off around you constantly. That's what it sounds like. Or a baby crying. It's just NOISE. With captions, it's not noise anymore!

In the same vein: 

Movie theaters: Provide captioning devices. Please. I like the movies too! (Marcus Cinemas does, for every movie. It's a godsend. So thankful they're my local chain!) 

Airports: Provide a messaging board at all gates and in the concourses, so people can see updates. Provide a transcript of the safety talk. Really be aware of your hearing-impaired passengers and make sure they get the information they need. Write it down if you have to! It's no good for me to tell you I'm hearing impaired, and then you look at me like I have lobsters crawling out of my ears. 

6. Put in a telecoil system. This is mostly for churches and other gathering places where people are using microphones. Telecoil systems are great! 

Sign indicating my church has a hearing loop installed. This means I can understand the homilies! Yay! 

7. Use microphones There are few things in the world that irritate me more than people who do not use microphones, when a microphone is easily available. Do not do the crappy, "oh, the acoustics are fine." THEY ARE NOT. You are being silly and denying people the ability to hear and understand you. Especially if the place has a telecoil system installed, use the microphones! Otherwise the telecoil system is no good! 

If we're in a place that's echo-y, like a big meeting room or something, and you don't use a microphone, I'm lost. Most people do not know how to project. After a few minutes, I get very irritated and cranky because I have to work so hard to understand you. And if you do this continually I will stop coming to these events, because I will get irritated and angry, and sad, because I cannot hear and understand. And sadly, this seems to happen a lot with church stuff. So....yeah. I might be a leeeeetle annoyed about this. 

Also, face out. Show me your face! If I can see your mouth, that helps. (See the last entry, which talked about lip reading)

If you don't have hearing problems, I want you to imagine being surrounded by a swarm of bees and trying to listen through that. Or being underwater, and trying to hear someone speaking above you. Now imagine that happening for an hour, two hours, three hours....you'll start to get some idea of what it's like to try to hear and understand people in this situation. It's mumblemumblemumblemumble. How long would you want to put up with that? Not long, I'd wager. 

8. In design, think about acoustics. Places where there are metal floors, metal ceilings, metal everything? That's terrible. There is nothing to absorb the sound. It's one big sound magnifier. The ADA requires places to have wheelchair ramps and access*. Do the same thing for the hard of hearing. Think about it. It might not be "trendy", but you'll make me a lot happier. Have some carpet. Have some wood. Have things that absorb sound and don't make it so loud. (in the same vein--braille menus, y'all. Come on. Large print, too!) 

9. Be understanding. It can be hard to have to work at hearing. Because really, it's work. When I've been in a group of people for a long time, I have to work hard to understand people, what's happening around me, etc. So if I say, hey, I gotta go, or I'm going to bed, don't be all "but it's EARLY!" Or whatever. My brain is very, very tired. I probably have a big headache. Just let me go. :) 

10. Inclusion. We talked about this before. But if you're in a group with a hard of hearing person, make sure to include him in the conversation. If I ask you what's being said, please tell me. Don't ignore my request. It makes me angry. I love to talk. If I'm just sitting there, not talking, chances are it's because I have no idea what's happening and no one's cluing me in. This. Is. Sad. Please don't do that. :) That doesn't mean that you have to be all over me every five seconds. But do make an effort to talk to me! Because otherwise, SADNESS!

I think I've covered everything...is there anything else you want to know? Drop it in the combox and I'll answer!

* Doesn't mean they do it well....see my series on the ADA about this. 

Sound and Silence Part III: Living with the CI

Last Saturday was World Hearing Day, so I showed a few shots of my Bionic Ear on instagram. Some people were shocked to see I had one! So I decided it was time to do a little updated series here about why I have one, how I got it, how I like it, and what life is like with one. You can read the other parts here: Part I, Part II. 

So let's talk about my day-to-day CI experience (and a little bit about accommodations, at the end, but we'll talk more about that tomorrow.). 

There are times I don't wear my CI: 

• When I'm sleeping (although I can--it's just not really comfortable. But when I'm in the hospital, I do.) 
• When I'm swimming * 
• When I ride certain rides (roller coasters? It comes off. I really don't want to have to look for it later...) 

There are also times when my head just hurts. Keep in mind--there's a magnet in bone. That's going to hurt sometimes. On those days, I have to take the CI off and I'm deaf for most of the day. It's not fun, but it's not terrible. It's inconvenient. 

I do have to keep the hair there cut short, or the magnet has trouble connecting. I don't shave it, but I do cut it reaaaallly close. 

Currently I'm having issues with the magnet. The outside processor doesn't always like to attach correctly so there are times when it will shift and I'll have to move it in place to get it to work again. That's irritating, but it should stop when I get a new processor. 

That's a fun process, by the way, because insurance companies don't like to pay for new processors. The one I currently have will be declared obsolete next year, and then insurance companies will have to pay for an upgrade, because my current one can't be fixed anymore, and there won't be parts made for it anymore. But until then, they won't. Well, they will. We'll just have to fight them on it. (Here's a trick, guys: Never assume that insurance won't pay for something. Don't just pay the bill. ARGUE WITH THEM!)

Why insurance companies do not pay for hearing aids, or CI upgrades, is beyond my understanding. It's so ridiculous. Hearing is just as important as sight, but hearing gets shafted. (Part IV is going to be all about accommodations. So more on that then!) For example, insurance will pay for an entire evaluation and surgery and a processor for my right ear, but they won't pay for an upgrade for my left ear. Which is cheaper? Which is better for everyone? And which will the insurance company pay for? Yeah. sigh. 

Cochlear implants cost about $5,000. Now, the first one is covered. If you have surgery, then the surgery, the implant, the processor--all that's covered. But upgrades aren't. About every five years or so, you can try and I've had luck with insurance paying then. This year is my five year mark for my current processor. So we will either try this year, to get a new one, or try next year, when it's more likely we won't have to argue as much! 

Think about cell phone or computer updates. Every time there's an upgrade, it's better, right? CIs are the same way. The one I have now is much better than my first one. There are not just cosmetic things (i.e., it's smaller) that are "better", but also in terms of power, of programming, of what it can do. So it's not like upgrading to be "cool". It really is a substantial difference, usually. 

The batteries are around $200-250 each. At some point they stop holding a charge and you have to replace them. I currently have three, but one is cracked so I don't use it on a daily basis. It's an emergency battery. The two I have I rotate, so they'll last longer. 

There are other parts, like microphone covers, and ear hooks, and things like that, that have to be paid for. You get some of these things when you upgrade, or get your processor, but often I have to buy more. 

In general, my CI is great. But like I said in the last installment, I can't use the phone. Everyone sounds like Charlie Brown's teacher. (That goes for people like my parents, too. I should know their voices better than any other--and I do--but I can't call them on the phone. That should tell you how terrible my hearing is on the phone.) 

I do rely on lip reading, a little bit. But not many words are lip-readable. I think around 10% of English words are uniquely identifiable in lip reading. Go talk to yourself in front of the mirror and notice how many words look similar. Really, for me, lip reading helps in context. But on an airplane? Forget it. There's way too much noise for me to understand what the flight attendant is saying, even if she's leaning right over me. I can guess that it's time for beverage orders because she'll  have the little pad out. :) Flying is sort of rough, when you're hearing impaired. **

FaceTime is a godsend. That's really the only way I can use the phone. Do I have a cell phone? Yes. :) But I don't use it as a phone, most often. I FaceTime people, and I text. And I did take ASL in high school, just for fun--God prompting, there....

In restaurants, I want to sit against a wall, or in an area where there won't be sound coming from behind me. I'll generally adjust my CI settings, but I try to make as "optimal" an arrangement as possible for me, to help out. If you're walking on my right side and talking to me, I'm not going to hear you as well as I could. 

The other thing about the CI is that there's a little bit of a lag...a few seconds. So sometimes I'll ask someone to repeat something, and then I'll understand what they said, because my brain has caught up. 

Also, please folks--repeat what you said. Don't say you said "nothing." You clearly said something. Don't huff and puff if I ask you to repeat yourself. If you do that, then guess what? I don't ask you anymore. And then things get worse. And then people say, well, why didn't you ask for the person to repeat it? BECAUSE PEOPLE GET ANGRY. So please, do not roll your eyes or sigh or be like, why aren't you listening. I am. Believe me. 

It is very, very, very irritating to be left out of conversations. A lot of the time, especially in large groups, I don't know what's going on if people don't keep me in the loop. So, please do that. Tell me what we're talking about. Include me. Imagine you're at a table with people and everyone is talking around you. It's not fun. It makes you not want to do things! So please include people. 

My CI is much better than my hearing aids ever were. But there are still things I can't do, and there are still accommodations I need to make. It's not magic. It's awesome, and I'm glad I have it. But it's not perfect. I'm underlining that point so people really understand that. 

*There are things I could do to swim with the CI--there's a waterproof cover, for example. I just don't. But I could get one of those. 

**Flight attendants are just part of it. The safety thing? I can't understand that speech at all. Everything the pilot says? No idea. And we won't even TALK about how airports don't always have message boards, so I can miss important announcements about flight gates being changed, etc. If my friend Mary hadn't been with me for our California adventure, I probably would've missed my flight home, because they changed the gate! It is TERRIBLE. Fortunately airports let you take a "support person" back, so I have people wait with me before I board. I can--and have--flown alone. It's just stressful because I have to be on constant alert for any changes.