Sound and Silence Part II: The Cochlear Implant

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's part one. 

So, what the heck is a CI, and how does it work?

I'm going to keep this really basic. I'm not an audiologist and I don't play one on TV.  But this handy chart should help. You see the external bit, but yes, there are things in my head other than my brain. There's the magnet, to hold the processor on, and there's the wire that goes into the cochlea. Remember that the reason my hearing sucks is because my hair cells are dead. The hair cells live in the cochlea. So the wire replaces them, in a sense. The wire has an "array"--I think mine has 24--of sound things. I know that's super technical. I forget the real name. But there are24 different entries on that wire that can be individually fine-tuned. (More about that later) So instead of hundreds of hair cells...I have 24 electrode arrays. Now, it's better than nothing! But I note this to illustrate that CIs are not perfect replacements for real hearing. 

I had my surgery in May of 2008. Post transplant I had a lot to deal with--I had a skin graft surgery that November, and then we had to try hearing aids first, and then I had to get myself to agree to having a CI, and so with all that, it was a long-ish process to actually getting one. 

The one great thing is that I was "post-lingual"--meaning, I knew how to talk. (Boy howdy, can I talk.) If you have had severe hearing loss for a long time, or if you're a baby getting one, then there's hearing therapy involved. Even now, there are sounds I hear and it takes  me a minute to figure out what it is. (While writing this, with my CI on, I heard a crazy loud, scary noise. What is that?! It took me a few seconds, but I figured it out--crows.) Everyone knows the person who is hard of hearing who speaks loudly because she can't hear herself. I can hear myself. I'm just loud. (There are times when I can't hear myself as well--when I have the telecoil on, for example, so in church.) 

My ENT is fabulous. I've had him for years--he works a lot with CF folk, and more and more CF folk are having CIs put in. (ENTs also do all our sinus work. We have a lot of sinus work...I am lucky in that area. My sinuses tend to behave.) If you're in the central Ohio area, Dr. Willett, Ohio ENT is my guy and I adore him.  

So the day of surgery was just like any other surgery. Port accessed. Ready to rock and roll. You stay over night, of course, because people are putting things in your head! My audiologist, who is also at Ohio ENT, actually stimulated the CI during surgery to make sure it "worked" and that it had been put in correctly. That's a key part of the process, because I didn't get to attach the processor for a month, due to healing. You don't want to attach the processor and have it not work! 

For 21-30 days, your head heals. I wore my hearing aids, and waited for activation day. This is the day you see when those videos are posted to Facebook or YouTube where a kid or someone hears for the first time. Mine was not that dramatic. But instantly, small sounds came back--the sound of the turn signal, typing, things like that. 

(When your hearing goes, it's usually the upper registers that go first--high notes, high voices, likes kids and women. And fainter sounds, like turn signals, things beeping, etc.) 

My audiologist then programmed the CI. You can have up to four programs. Again, I don't want to get super technical, but I have all four slots on my CI filled with programs. There's a tiny button on the processor that I hit to cycle through them. The first is my "normal" program. That allows sound in from all sides, and is good all-purpose. The second is focused on who is directly in front of me, and cuts out side noise and background noise to an extent. This is good for  noisy places and restaurants. I have another program that focuses this even more. The fourth program is a richer program that's generally for music, but I can use it as an everyday program, too--you get a wider range of sounds and frequencies. 

There is also the telecoil. This cuts out all sound except what you hear through the telecoil system, which lets in whatever's coming in through a microphone.* This is what I use in church, and it's amazing. It's like someone is speaking distinctly and clearly into my ear. You are also, supposedly, able to use this for the phone. That is not my experience. (More on that later.) Of course the issue with the telecoil is that the other person has to have the microphone on, or the system is useless. (It does work for lecterns, too, or stand microphones.) 

Now, I have one implant. I don't have one in my right ear, because I want that 20% of real hearing that I have. When a CI is implanted, it removes any residual hearing you have left. I am truly deaf in my left ear without it. But I don't wear my CI all the time, so I need some residual hearing. This allows me to hear my alarm clock and other loud noises. There are also times when the batteries will inexplicably die. (This happened a lot with my first processor, not so much with my current one.) The 20% also helps out my CI, in a sense. It gives me some sense of directionality--where a sound is coming from, although not a lot. When I'm swimming, I can hear loud things. If I know your voice REALLY well--meaning, you're my parent or my best friend or my sibling--then I can decipher what you're saying, sometimes, with just my right ear. 

I use rechargeable batteries in my CI. I have three of them, and I rotate them. They get put in and can last about 15-24 hours on a full charge. I tend to not put my implant in early in the morning, because I sort of like the silence. But that's changing as I switch my workout routine to being in the morning. I need to hear the video. 

I'm using "hear" here, but what I really mean is "understand". I can hear lots of things. That doesn't mean I understand them, or process them. For example, I heard the crazy bird sounds this morning, but I had no idea what it was. 

Also--and I'll talk about this more in the next piece--but everyone's CI experience is very different. Rush Limbaugh has a CI, and he said he can't learn new music. I can, because, as we saw, I was very musically inclined and my ears had been trained that way. My brain still knows that language, in a sense. I work hard to learn new music. Instrumental music is difficult because it all sounds like noise, at first. But I can learn new songs and new vocal pieces with the CI--I just have to approach it differently. Some people with a CI can use phone adaptation stuff. I can't. I don't know why. But more on that next. 

*The telecoil can be "mixed"--basically, you can determine how much sound you want to get through the telecoil. Mine is 100%, when it's turned on. But you can do 50/50, 75/25, 90/10....whatever. 

Sound and Silence Part I: How I Lost My Hearing

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. 

I was born with normal hearing. 

Actually, I was born with really great hearing. My mom used to get irritated because I'd hear her whispering things to dad in the next room and yell, hey, I want to hear about that! 

As a singer, and a musician, your hearing is important. Obviously. A lot of my voice lessons involved listening. Intervals, pitch-matching, etc; all of that is a huge part of the musical art. 

In college, people started to notice that I wasn't hearing them when they were talking to me. Now, some of that was just that I tend to get really absorbed in things--a book, something I'm writing. But people would call my name, and I wouldn't answer. 

I went to the audiologist at Nationwide Children's, and I did have some hearing loss. Not a lot, and probably not enough for hearing aids to help. But it was showing up on the hearing tests. OK. I just shrugged and went on with my life. 

In between 2003-2005 (pre-transplant), I was on a lot of drugs. Hard core, IV meds, in order to keep me alive and breathing. Some of these were ototoxic--meaning they killed the hair cells in my ears, the hairs that conduct sound to the cochlea. Without these hair cells, you don't hear. 

(Here's a brief explanation: 

When you are exposed to loud music or noise, it is your hair cells which are damaged. Hearing loss occurs because loud sounds are really just large pressure waves (like when you stand next to a subwoofer and can "feel" the bass). These large pressure waves bend the stereocilia too far, sometimes to the point where they are damaged. This kills the hair cell. Since cochlear hair cells can not grow back, this manifests as a permanent hearing loss.) 

In my case, it wasn't loud noises. It was the medication. Once hair cells are gone, they do not grow back. They are gone forever. 

And the more I used these drugs, the more hair cells died, in both ears. 

By the time of my transplant, my hearing had gotten worse, and we were starting to think about hearing aids. I was fitted with my first pair soon after transplant. Hearing aids are not covered by insurance. I needed the most powerful kind, the behind-the-ear hearing aids, and they were fit to my ear shape. 

They were also a pain in the butt. 

Hearing aids just magnify sound. It's like turning up the volume on everything. But it's everything. It's not discriminate. Things like pages turning were incredibly loud. In a crowded room, I couldn't focus on one sound. Everything came in, all the time. 

The other problem is that hearing aids break. The outer ear part would separate from the part that went in my ear. I was constantly trying to put them back together with tape! 

In 2007-2008, I got sick again--and more ototoxic meds. Now the hearing aids weren't really helping at all. It was time to think about cochlear implants. 

I didn't like this idea. One, I didn't like the idea of a magnet in my head. I didn't like that it would take any residual hearing away from the ear that had the CI. I didn't like the idea of surgery and weirdness. 

But eventually it got to the point where it hurt to hear. The organ at church was painful. Listening to people was awful. I didn't like to go to crowded places. I couldn't go to the movies, and I love the movies. 

That's when we decided it was time for a CI. 

A cochlear implant is vastly different than a hearing aid. A hearing aid, as I said above, just amplifies sound. A CI helps my brain decipher and understand the sound. It directly stimulates the auditory nerve, so they bypass all my damaged equipment and go right to the source. 

I had to have some tests done: you can't have a CI unless you have a certain amount of hearing loss. You need to have moderate to profound loss to qualify for it. Insurance does pay for a CI and the surgery.* I had a CT scan and MRI** on my head, to make sure they could implant the magnet, as well as  more hearing tests, to determine the extent of my hearing loss, and also, which ear would receive the implant (I didn't get bilateral CIs. More on that next.). My right ear has slightly more hearing than the left, so the left ear was the "winner", and has the CI. 

Surgery was scheduled for May of 2008. 

In the next installment, I'll talk about surgery, recovery, and how the CI works. 

* More about insurance coverage in the upcoming installments. 

**Last MRI ever, because, with a magnet in my head, they're contraindicated from here on out. Yay! 

No, Emergency Rooms aren't "first come, first served"

Time for stories, boys and girls!

Or, really, let me 'splain something to you: How Emergency Rooms Work. 

Emergency rooms are not first come, first served. 

Some people need to be told this. So I'm telling you!

Emergency rooms work on a triage system--meaning, true emergencies go before "emergencies that can wait."

Let me illustrate this. 

If I--a double-lung transplant patient--come into an ER talking about chest pain, irregular heartbeat, fever...
I will get taken back immediately. I will not wait. I will not sit in the waiting room. I will go back and be evaluated post-haste. 

This is because Very Bad Bad Things Could Happen to Me Very Quickly. I could have a pulmonary embolism (PE). I could be having an acute episode of rejection. Many, many things could be going wrong that need fixed tout de suite. 

So, I will never wait. 

Really. 

But to get to that exalted "I will never wait" point, I have to have a long, long history. 

Now, you in the waiting room--you have brought your kid who is sick. Might have a slight fever. Might have a broken arm. Might have an ear ache, or just feel funny, or be vomiting. Most of those things are not emergencies. (Unless it's a greenstick fracture.) These are things that can wait. So yes, you will see people get taken back before you that don't "look" sick. That doesn't mean they are not. 

If you are in a room in an ER/ED, and you are waiting, I want you to think for a second. You have no idea what is going on in the rest of the department. You don't know if five ambulances just came in with critical patients. You don't know if there are lots of complex cases being dealt with. You have no idea. 

Now, if your kid is getting worse, certainly tell the nurses/staff. But remember, there is worse, and then there is "I'm impatient and I want to go home."

Keep in mind that if your kid is healthy enough to wait, you are lucky. 

I have been the kid that the entire ER has been working on--or what seemed like the entire ER. It is not fun. If your kid--or you!--are cranky or tired and want to go home, be glad that you are in that position. Because it means that death is not an immediate possibility. 

I have also been the person who's been in the ER, been cleared, and then waited. I know waiting is not fun. But also, it means, I'm not going to die today! Yay! I'm OK enough to go home! Because how many times has that not been the case for me? A lot. 

So if you are in the ER, and you are tempted to complain because you've been there for six hours, or because the kid in the next room "doesn't look sick", please do not do those things. Please be quiet. And realize that your kid is probably going to be OK. But you have no idea what is going on in the other cubicles and emergency treatment rooms. 

(And also: EDs are not your doctor's office. If you think there is a problem, try an urgent care first. Here is a handy link! ) 

Invisible Disabilities and the Workforce

Fun medical equipment from the 1980s....

Take a look at the picture of me on the sidebar. (If you're reading this in email, click through.) 

What do you see?

I'm not asking for an assessment of my physical attractiveness, or lack thereof. But if you just looked at that picture,  you would think, yes. She looks like a pretty typical 30ish woman.

This is what you'd be missing: 

*You can't see my cochlear implant, tucked behind my left ear. I don't wear any hearing devices in my right ear, and there's only about 20% natural hearing left there. 

*The scar on my forehead? You can see that, but you probably don't know it's from a skin cancer removal. You also can't see the bald patch on the back of my head, from another one. Skin cancer is 10x more common in post-transplant people, because of our immunosuppression. It's not because I'm fair. (And I'm religious about sun protection, anyway). 

*You can't see that I've got about 52% lung function--which for me is good. That's great! But for normal people, if it's lower than 70%, there's probably an issue. For me, 70% is a dream I will never see again, after hitting it in 1997. So imagine working without one lung. That's me all the time--and that's GREAT. I LOVE IT! 

*You can't see the burn on my right arm, which is left over from transplant surgery. Third degree burn. Skin graft. It's rendered my right arm usable--thank God I still have it!--but it doesn't have complete function like it used to. (Knitting probably helps, though, in making it stronger.) The skin is very, very delicate. It tears easily. So I can't do a lot of manual labor with this arm--and this is my dominant arm. If you were looking at me, you'd notice, but you wouldn't have all that information. 

*Oh, and I'm anemic. I always have been. Part of the paleness. :) But that affects my stamina, too. I'm used to it, now, but there are times when I need red meat and sleep--Moreso than the average bear.

I'm telling you all this because invisible disabilities have been in the news lately, as a part of the new Medicaid standards the administration is considering. I look pretty "able bodied", but I'm not--as any physical exam would show. I can't use a telephone--I use FaceTime, but not a real phone. If you call me, I can't understand you. You will sound like Charlie Brown's teacher. Being immunocompromised means if I get sick, there could be a hospital stay in my future. You get the flu, you stay home. I get the flu, I can end up in the hospital. I need to be more circumspect about where I go, especially during flu season. And honestly, I need to take care of my body. That means giving it enough sleep, among other things.  

So, looking at me, you can't see these issues. But they're there. And when you compare me to an average 35 year old woman, it becomes apparent. Invisible disabilities are real. Ask anyone who has arthritis, for example. Or diabetes. Or epilepsy (which I had as a kid). They're not to be taken lightly. Just because someone looks able-bodied, doesn't mean she is able-bodied. 

As a society, we need to be cognizant of that. I'm not making policy suggestions, here, but we need to be aware that there are serious disabilities that people cannot see, and that can impact ability to work. For example, I look fine. But you don't want me to be your receptionist, or ask me to carry heavy things or fix machinery on a regular (or even semi-regular) basis. And of course, I see many more doctors than average people. I see my transplant doctor every four months--I see my ENT every four months. I see my dermatologist very frequently, and I have days where I'm out having Mohs surgery, or having things removed--that takes time. I can have surgeries scheduled at the drop of a hat. Any employers who hires me needs to be aware of those things, and needs to be flexible about them. If they're not, then I'm in trouble. And my employer won't be happy, no matter how great my work is, or how intelligent I am. Without that understanding and flexibility, a job will be hard for both of us. 

I want to provide this as food for thought, when you read about invisible disabilities, or work requirements. It's not wanting to work--it's things that make working difficult, for both employer and employee. 

*

Having said that, though, I don't think a person with a disability or a chronic illness should automatically go the SSDI/Medicaid route. Here's why. 

I think that being "normal", as much as you can, is good for self-image, self-esteem, and general mental health. I know that one of my biggest drivers growing up was that I was not going to be babied. I was going to be normal. That meant, doing my homework. Going to school. Taking exams. Etc. If I needed accommodation, I asked for it, but it was low-key. I finished high school. I went to college. And after college, I got a job. 

I knew that I would need a job with good insurance. So yes, if you have medical issues, that means you have to consider jobs with good benefits. It doesn't mean you can go off and join a non-profit that doesn't provide good medical coverage, OK? You have to be reasonable and logical. I wrote more about this here. 

I do not think it is a good idea for people with CF to sit around at home and bewail their state. First off, that would have driven me insane. Really. When I had to be home for four months post-transplant, after about month three, I was going stir-crazy. I have to have things to do. 

But--there comes a time, when yes, you can't work anymore. This happened with my friend Sage. When she was listed for transplant, she had to leave her job and apply for SSDI. That does happen. It's part of life. But I don't think--and we talked about this often, so I know we agreed here--that she wouldn't wanted to sit at home, either. 

Maybe you do. OK. But my feeling is, if you can contribute, contribute. BUT that requires having an employer that is flexible and that is willing to work with you. And I had that--until I didn't. Once that goes away, then life can get very difficult, and then it might be time for SSDI/Medicaid/whatever. If that time comes, then go for it. That's when people on the government side need to realize that we might look pretty able-bodied. But we're not. 

And also, when it comes to the Medicaid/SSDI system, a lot of the time, they're not talking disability like I have a disability. They're talking about worker's comp sort of stuff. Like, back problems. Problems with limbs, or standing for eight hours, and movement. The system isn't really designed for people who have chronic issues that aren't movement/skeletally based.  That is frustrating, because what I have is what I have. I'm never going to get my hearing back. My lung function may go a little higher, but this is pretty much as good as it gets. I'm never going to get better skin on my skin graft. So the government side of this needs to realize that some disabilities don't get better. They might stay stable--or they might radically get worse--but "better" is not going to happen.  

I know that before I had to deal with all this, I had no idea that any of this was true. So I think it's worth it to share these thoughts with people, so you can realize that when government talks about "disability", there are levels, and there are degrees. 

I am not brave

Let's just get this out of the way. 

I am not brave. 

I am not courageous. 

I am definitely not a saint. 

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

This makes me really uncomfortable. 

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

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

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

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

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

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

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

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

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

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

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

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

Twelve Years, and a Celebratory Pork Chop

Me as an intrepid toddler. 

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

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

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

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

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

Here's to more celebratory pork chops. 

Celebratory Pork Chop

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

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

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

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

Enjoy deliciousness. 

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

Charlie's Dignity

I love my parents. They've done yeomen's work the past 35 years, helping to keep me alive. I know parents who do not do a good job with their children's illnesses--my parents have been rockstars on every level. 

I love my doctors. They are also rockstars. They are the people who continually keep me alive, even when other doctors have told them that it was a waste of time and/or effort. I have a doctor who got an international pager (back in the day) so we could always contact her. I have nurses who will answer my emails at any time. I've worked with incredible medical professionals of all stripes. (And some that suck. But we're not talking about them today. We're talking about the awesome people.) 

Most of the time, the two groups of awesome are in agreement about what should be done. But not always. When I was in the ICU in 2001, and no one knew what was wrong with me, several of the ICU doctors were ready just to write me off. My parents weren't, and neither was my doctor, or the head of the ICU, who worked insanely hard to figure out what was wrong with me--eventually, they did. And I'm writing to you today. 

Doctors are awesome. But doctors can be wrong. And parents are awesome. But parents can be blinded by love. 

Which is why we need moral and ethical guidelines in place, in cases where the two groups of Awesome cannot agree on what is the proper course of action.  Except...what do we do when doctors want to embrace a course of action that will kill their patient, and the parents are vehemently opposed? 

If you aren't familiar with the case of little Charlie Gard, here's the nutshell: Charlie has a very, very, very, VERY rare disease--so rare that maybe 17 other people in the world have it. Since birth, Charlie has been treated at London's Great Ormond Street Hospital (GOSH). Because of Charlie's disease, he cannot breathe on his own, and he cannot see or hear. 

GOSH wants to take Charlie off life support so he can die, because they feel he's not going to get any better, so it's time to embrace the inevitable. His parents, obviously, are against this, because Charlie is alive with the help of ventilators--like many other people, in ICUs the world over, or people who have tracheostomies. They are alive because of machines, but they are alive. A ventilator or breathing support really isn't an extraordinary measure, these days, on its own. 

The parents would like to take Charlie to the United States to try another treatment--GOSH won't let them. This case went all the way to the European Court of Human Rights, which sided with the hospital.  (Isn't that just dripping with irony?) 

What's the hospital's argument? That the treatment the parents want to try will cause Charlie pain and suffering and it won't work, so they refuse to let Charlie's parents try it. 

I find the hospital's "reasoning", on multiple levels, insane. One because doctors are supposed to help patients--not kill them, which is what would happen if Charlie was taken off the ventilator. It's no different than removing a breathing tube for a quadriplegic. Now, Charlie's condition, as it stands now (and as I understand it), won't get better. He's going to die. But that doesn't mean the parents don't have every right to try another treatment, in another country, that the parents are going to pay for. The money's already been raised. Hospitals in the US, as well as Gesu Bambino hospital in Rome (which is run by the Vatican), have offered to take Charlie as a patient. But GOSH will not release Charlie to his parents' care. 

Just because Charlie cannot breathe on his own, cannot hear, and cannot see doesn't mean his life has no value. OK? I can't hear without my CI, really. So does my life have no value? I've been on ventilators before. Did my life have no value then? Does Stephen Hawking's life have no value, because he has a tracheostomy? Or people in wheelchairs, or quadriplegics, who also need help to breathe and do just about anything on their own? Since when is the value of a person determined by what they can do? 

When a person is dead, then yes, it's time to let the child go. But Charlie isn't dead. This isn't the case of parents fighting a hospital over a brain death certification. Charlie is alive, and the hospital wants to stop that--because he might be suffering. And he's not going to get any better (they think. They might be right. But we don't know that.). 

I talk about this sort of thing a lot here, because people need to realize that life isn't about what you can do. Life has value because a person has value, no matter what. Pain and suffering are inevitable parts of life. 

But apparently no one told the folks at GOSH, or the European Court of Human Rights, this. Because Charlie's life, to them, isn't really all that important. They've kept him alive long enough. Now it's time to just shut of the machines and kill a little boy. And if we're going to talk about pain and suffering, they will basically suffocate Charlie by removing his ventilator. Is that going to cause pain and suffering? I think so.  

I'm not going to say the hospital doesn't care. I'm sure the nurses and doctors who care for Charlie care very much. But the state has clearly overstepped its bounds. 

Charlie can't make a decision on his own about his care. His parents have to do it for him. They would like to, at the very least, take him home to say good-bye to him, and let him die with them, in real dignity, not the fake dignity the state is suggesting.   If Charlie's parents decided that they wanted to pursue hospice care for their son, that should be their decision, and the hospital should give them the resources they need to make sure that Charlie can have a peaceful passing. 

Is it inevitable that Charlie will die? Yes, because we all will. But there is absolutely no need to hasten it, the way GOSH wants to, because The Almighty Doctors have decided that it's time for Charlie to die. 

Seven Quick Takes

I. 

I haven't done one of these in awhile, but I thought, since I had a lot of linkage to share, I'd bring it back! :) 

II. 

If you follow me on Instagram, you know I've been so excited about the launch of Lara Casey's Cultivate book! I'm so excited, in fact, that I'll be giving away a copy next month! So watch for details! Here is my preview of the book (my real review goes up soon!).  If you can't wait for the giveaway, you can get your copy on Amazon here or at your local bookstore!

III. 

Since we're talking Health Care (again), I thought I'd share some links on a series I wrote earlier this year: Parts one, two, and three. I might have something else about the Medicaid stuff next week. I know some of you enjoy my policy wonk adventures, but not all of you, so I try to keep it to a minimum. :) 

Essentially, what it comes down to is this--if we want to expand something--or even create something-- we have to make it solvent. I'm reading the Chernow biography of Alexander Hamilton right now (the one that inspired Hamilton, although the more I read the book, the more I am annoyed at the liberties the musical took....), and Hamilton wrote something I found prescient: "Creation of debt should always be accompanied by the means of extinguishment." 

Or, in other words--how are we going to pay for this? 

IV. 

As we're heading into the Fourth of July weekend, here are some of my favorite book/movie suggestions for you. They either talk about the revolutionary war, or revolve around July 4th: 

The Killer Angels, by Michael Shaara, and the movie, Gettysburg, which is based on the novel. 

Laurie Halse Anderson's Seeds of America trilogy: Chains, Forge, Ashes

The movie 1776 (the musical. It's great! Mr. Feeney is John Adams!) 

The miniseries John Adams, and the David McCullough bio upon which it's based. Also McCullough's 1776, which is amazing. 

V. 

Also, read the declaration, and the preamble to the Constitution: 

We the People of the United States, in Order to form a more perfect Union, establish Justice, insure domestic Tranquility, provide for the common defence, promote the general Welfare, and secure the Blessings of Liberty to ourselves and our Posterity, do ordain and establish this Constitution for the United States of America.

(And also realize the difference between the two--please?) 

VI. 

If you love candles, but have a hard time finding a good summer scent, then you need this candle from the Laurel Mercantile Co. (It's run by Erin and Ben Napier, of HGTV's Home Town.) It is a divine floral smell that smells just like being outside in the spring and summer

Not only does it smell great, but it also burns very evenly and cleanly--both big bonuses. And, in fitting with the American theme of this post, it's made in Mississippi, so go American manufacturing! (Which was also something Alexander Hamilton supported. He wrote an entire paper on manufacturing and the sort of things he thought we should make.) 

VII. 

Finally....

I've been seeing a lot of "lose" vs. "loose" on the Internet this week. Y'all know the difference, right? :-p 

Surgery update!

Part...I have no idea. Three, maybe? 

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

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

Yayyyy!

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

Happiness! 

Surgery wrap

Above: Post-surgery necessities .

I'm back! I didn't have to stay overnight, either, which was great. 

So, mostly the surgery was uneventful. The nurse I had didn't want to use my port because she was afraid it would get infected. Um, OK? I mean, unless you're planning on rolling around in mud with hogs and then inserting it, I think we're good. Anyway, Dad and I made it clear that the port was all I have going on, good vein access wise, so people came in and got it going. Per it being mine (and therefore, difficult), it took two tries to get it working, but once it got going, it went merrily on. 

The anesthesiologist was a Penguins fan, so I appreciated that. I tend to get really nauseated after surgery, but this time the hospital gave me a little anti-nausea patch to wear, that worked like a charm! I'm a fan!

The only other issue we ran into pre-op was what to do with my CI. Since we were moving scalp around, I didn't want my CI to become lost in the process. At the same time, I needed to be able to hear if people were talking to me in the OR. So I managed to keep it back into the OR with me, but not my glasses, which annoyed me, since lip reading and being able to see are important to my being able to figure out what's going on around me. Oh well. (Another difference between a children's and an adult hospital--at NCH, I can keep my glasses with me the whole time. Makes my life easier.)  

The surgery took about an hour and then I was in the recovery unit for awhile. Dad and I got home around 5:30, 6:00, and I had a very small dinner because I had a very sore throat, and was in bed by nine. God bless Halo Top ice cream! (Yes, I've been intubated many times before, but I don't remember it being quite so uncomfortable after. But whatever. It's fine now) 

Today I am feeling pretty good. The pain meds I have keep the pain really well in check, which always makes me happy. I'm not allowed to exercise until next week, post-surgeon clearance, so there's going to be a lot of reading happening this week. Not that I mind that. I can make a dent in my book pile! 

The other thing is the lovely dressing I have on my head. I can shower--yay!--but there is part of the area that the surgeon left open to drain a bit--in order to get it to close he would've had to have made a much larger incision. So we're just letting it drain, but that means I have to keep ointment on it, and gauze pads. It's not nearly as bad as post-Mohs, or even immediately post-surgery, but it will look sort of odd. I'll probably be trying to hide it under my hats. :) 

Les Incompetents

via GIPHY

(Credit to my mom for the title of this post!)

This week has been, for various reasons, Full of Wrath. There was general annoyance from having a busy week, trying to get a lot of things done pre-surgery, and my sinuses being silly, which laid the groundwork. Then my hockey team played two EXQUISITELY CRAPPY games. Super enjoyable. (NOT.) But they redeemed themselves Wednesday night and are going to the conference finals. 

However, all of Wednesday (before the Penguins won) was just terrifically wrath-y. Because some hospitals are terrible. Namely, adult hospitals that aren't used to dealing with people who have a complex medical history! 

Settle in for the story. 

As we know, I am having surgery next week. Now, the docs set the surgery date three weeks ago. And at that time, we (meaning me, my family, and my transplant team) asked the surgeon and his staff if I would need any pulmonary testing (like PFTs).  Do I need to see my doctor ahead of time? Etc. etc. 

"No, no, nothing like that. We have our pre-admission testing and that's all you need," they said. 

So I wake up yesterday at 5:15 and get myself to the hospital for pre-admission testing. It is in a small room off, quite possibly, the ugliest hallway in creation. 

Right? UGLIEST HALLWAY EVER. 

After filling out paperwork and listening to a guy have a very loud conversation  on his cell phone in the waiting room, I got called back to register. Here, I was asked to give a "down payment" of $320. 

Yeah. I was thinking a co-pay of like, $40. NOT three hundred and twenty smackers. But I fork over my credit card. You would think, right, that if something like this was coming, they might have told me ahead of time? I've never had to give a "down payment" of any type before.

I'm then seen by a nurse, who goes over my stuff (meaning my paperwork and my med list), takes my vitals, and does an EKG. She is inordinately concerned about whether or not I have sleep apnea. I don't. 

Finally the doctor comes in. This guy is a "hospitalist", and from what I can tell, his job is to basically make sure that I'm healthy enough to survive surgery. He verifies this by listening to my chest and checking my throat. He tells me I can take my meds the morning of surgery, which I knew, but I trust but verify. The guy's nice, but basically useless for my intents and purposes. I have to explain to him how prednisone and immunosuppression affects blood sugars, which is why the last time I was at this hospital, I was on insulin, but now I'm not.....

So at this point, this morning has been a total waste in terms of actual surgical prep, but whatever. We're almost done. 

Now it's time to take blood. 

The nurse had asked me if I have vein access other than my port. "Um, you can try," I said. "Well, we don't access ports up here," she says. * 

At this point, I'm thinking that, if these people had been on the ball, I could've had a blood draw at the Resort, from my port, and had the results faxed over to this hospital. But I had no idea what was involved in this visit, because Adult Hospital told me nothing. So obviously, I could not have made good preparations, because I am not a mind reader. 

My veins are very tiny. My veins are very scarred. My veins are basically terrible. If you want to torture a person, ask him to take my blood. It can take over an hour. For IV insertion, it can take all day. And no, I'm not kidding. There was one time, pre-port, where it took about four nurses all day to get any sort of peripheral line in me. (A peripheral line is your basic IV.) Ergo, I like to save my veins for when we really really really need access and really really really cannot use the port. This doesn't count as a really really really need situation. 

"Our guy is really good," she says. Internally, I roll my eyes. Some people are magical, it's true. But they are few and far between. 

So, the "really good" guy comes in. I know this is most likely not going to work, because he won't have needles small enough for my veins. Which he doesn't. He will also have to be creative in finding a good vein. Which he's not. Sure enough, he sticks me in the back of my left hand ( in a tiny tiny tiny almost invisible vein), which doesn't work. So he sticks me again, near the crook of my right arm, and does manage to get blood. "That might bruise," he says. 

(Yeah, it might. At the moment it's a lovely shade of black, deep purple, and yellow. It almost looks like a spot of velvet. There's bruising, and then there's bruising. My hand looks OK though.) 

So I go home, get lunch, and decide to go over to my parents' house to apprise Mom of the morning. This was a good idea. 

Because, at my parents', Mom gets a call from Riverside. The "really good" tech had ruined my blood samples by allowing them to clot. So we can't use them to run the blood tests. I now have to have more blood drawn. 

Imagine Beeker swearing, and you'll have a good picture of my reaction. 

But at least I can go to Children's and go to infusion. So I finish my lunch, and, in full Wrath mode, drive to Children's. In infusion, my labs are drawn competently! Yay! They commiserate with me, and I leave.  

What makes this even worse? The Adult Hospital didn't even apologize for this massive inconvenience. Not even a form, "We're sorry that this happened."  And what if I was working? I'd have had to convince my boss to let me leave work again to go and get blood drawn. Because, obviously, it must be done that very second. (Seriously. The woman asked my mom when I'd be at the hospital--she wanted a time. I had an image of her hovering over a fax machine, breathlessly awaiting my results....)

(Just a note about blood draws: It's not the blood draws that were bothering me. I've been having blood taken from me regularly since I was a toddler. I'm not afraid of needles and it doesn't hurt. What made me angry was the sheer incompetence and idiocy.) 

When I get home post-draw, I find out that Adult Hospital has now decided they need me to see my pulmonologist before surgery. Meaning, before Wednesday. Meaning, Monday, which is the only post-transplant clinic day. 

Remember how they said I didn't need to do this? Yeah. So do I. 

So clinic, magically, wonderfully, arranges for me to be seen on Monday morning. (And, again, imagine if I was working. I'd have to tell my boss that now, I also need all of Monday morning off. When I was working, Monday morning was one of our busiest times all week.) 

This is why Emily doesn't like adult hospitals. They have no idea how to deal with a medically complex patient. NONE.

Les Incompetents, indeed. 

---

*For the record: ports are not hard to access, once you know how.  My mom was taught by the NCH nurses, and we access it at home every month, to make sure it's working and give it a nice Heparin flush to keep clots from forming. I could probably do it**, if I had the right materials. (I do de-access myself, a lot of the time.) I could definitely walk someone through it. I hate that hospitals don't teach more nurses how to do this. IT IS NOT HARD. It's not like brain surgery, here. It can be taught to any competent person, and performed by a competent, detail-oriented person. My mom does it every month without any issues. But then, she's sort of magic like that. She's also learned to change burn dressings and clean them, give and constitute IV meds, and all other sorts of magical things. 

** Many people do access their own ports. Mine is in a sort of wonky position, so I don't do it. But I know how, if I ever had to. 

Surgery updates!

The reaction of most people when I say "skin cancer" is a lot like this.....

So, I have dates for my procedures/surgeries, etc.! 

This coming Wednesday, I'm going to the hospital to have the pre-admission testing done. I'm guessing this will just be heart stuff and vitals--like an EKG and regular stuff. It could be more than that, but that's not what I'm anticipating. Apparently I will also be talking to a doctor, for some unknown reason. This isn't normally how I do pre-admission testing at the Resort; in fact, sometimes there's no testing at all, just a phone call from a surgical nurse to get a history. So this is all new and so much fun! (sarcasm off.) 

Next Tuesday (the 16th), I have my Mohs surgery to actually remove the cancers from the top of my head. These are both squamous cells, not melanomas--so it's not nearly as serious as it could be. However, these guys are bigger than what I've dealt with thus far, so I imagine it will take more than two rounds of surgery to remove the cancerous cells. (For more on how Mohs surgery works, read what I wrote about it here.) The procedure is at 9:30 and I'm to wash my hair really well before I head to the doctor's office, which makes sense, given that it won't be able to be properly washed for awhile. 

After my dermatologist removes all the cancer cells, I get to go home. The next day (May 17), I will go to the hospital with my dad to have the surgery which will actually close the spots my doctor made the previous day, and he (my doctor) will do all the plastic surgical magic to ensure I have hair and not bald spots. (You can read about that here.) I may or may not stay overnight at the hospital. But I will definitely spend a day or two at my parents' since I won't be able to drive and can't be left alone for various reasons, so...whatever. No biggie. 

I'm not anticipating this to be any sort of big deal. But then again, when you've basically been cut in half, nothing is a big deal anymore. Really. And even in the area of head surgery, this is low-key on the Big Deal Chart. When I had my CI implanted, part of skull was removed. That, to me, is a much bigger deal. :) There's a magnet in my skull, people. Moving some scalp around? Not  a problem. 

As far as blogging: There will be a yarn along this week, and mayyyyybe next Tuesday before I go in for surgery. But after that, there may be blogging hiatus. :) 

Yarn Along No. 58 and a Medical Update (Oh, joy!)

The kerchief continues! The nice thing is that I'm finally getting used to working with linen, and I really like it. I think this is going to be a great finished product. I also have the blocking mats and pins that I'll need to finish this project, even though that's a ways off in the future--I wanted to be prepared! I've never blocked anything before, but fortunately Hannah has some great advice on finishing linen pieces.   

So here's this week's progress. I'm getting near the end of the first ball of yarn, and there are three, total, for this project. So even though it doesn't seem like it, I am making progress! 

Ravelry notes here. (The pictures here are where you can really see the progress.) The book is Crossing to Safety, by Wallace Stegner. I've heard good things about it, but I've never read it--so I decided to fix that! I'm enjoying it so far. 

So, on to the Medical Update. 

As you may remember, I've been having some skin cancer issues. I actually really hate it call it that because it's so not cancer, in my book. I mean, it's stuff we're removing with local anesthesia and it's so easy. It's not cancer, to me. But technically, it is. So, I suppose for our purposes I'll be technically correct. 

(And no, this isn't because I'm fair, and I just didn't wear sunscreen. I've had some people react like that when they see the scar on my forehead from my last Mohs surgery. I then have to tell them that, no, it's not because I was negligent. Anyway, all those details are in the link in the above paragraph.)

So! There are four spots that we wanted to deal with--three on my head, and one on my chest. The three on my head and divided into two areas--one on my forehead, and two on my scalp. The forehead, chest, and first scalp one have been dealt with. But the last one is on the back of my scalp, it's rather large, and my dermatologist wanted a plastic surgeon to "close" it. 

I met with the plastic surgeon yesterday. He is very nice, very smart, and my kind of doctor. The easiest thing to do would be to do a skin graft, like the one I have on my right arm. But that also means that you have a bald spot on your head. So we're not doing that option. We're doing something called a scalp rotation flap, which basically means we're going to move part of my scalp to cover the surgical site, so that I have hair there! I'm not really sure of all the ins and outs of the procedure, technically, and I'm sure you don't want to know. :-P The end result is much more cosmetically pleasing, and, honestly, for me, it's probably easier. Skin grafts involve taking skin from other places on my body, and that means you have two surgical sites you have to deal with. That's not fun. So I support the doctor's plan. 

Because of my medical history, this is going to be done at a local hospital (the same one where I had my cochlear implant surgery, so I'm familiar with them, and they have records about me already!). That way, my surgeon can either discharge me the same day, or, if he needs to, he can keep me overnight. I like this plan a lot, because I want to make sure that any issues are dealt with appropriately, and in a real hospital setting (as opposed to an outpatient surgical center), my people have all the things they need to take care of me, should the need arise. I like that. It makes me happier. 

The process is in two parts: my dermatologist will remove the actual cancer, and my plastic surgeon will close/reconstruct it. Thus, the two of them have to coordinate their schedules to make sure we can do this in a timely manner--meaning, in May, and in a way that doesn't leave me with an open spot on my head for days on end while we wait for a surgical slot to open up. So by the end of this week, I should have dates and times and all that good stuff. 

Being me is never boring. 

Transplant side effects: Skin Cancer

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. 

The Work of Acceptance

Andrew Wyeth, "Christina's World" 

A lot of people equate "acceptance" with "giving up." 

This is not true. 

I'm in a book club that's reading A Piece of the World and one of the discussion threads that keeps popping up is that the main character, Christina (who was a actual living, breathing person) is too "accepting" of her disability. She doesn't fight back, she doesn't try, she just gives up. 

Now, the book is about Andrew Wyeth's famous painting, Christina's World, and the woman behind it, Christina Olson, who is our narrator. We aren't sure what sort of illness she had, but it was a degenerative one that eventually took away the use of her legs and other parts of her body. 

In the novel, Christina is first fitted with braces to "fix" her legs. The braces are incredibly painful, causing her to bleed and bruise, and they don't help. She stops wearing them. Her parents want her to try a treatment at a hospital, but when she and her father get to the hospital, she refuses to enter. Later in her life, she tries one last time, but is told to "rest". 

But Christina doesn't pity herself; she goes on with life as usual. She doesn't want treatment because she doesn't think they'll work, and she doesn't see her body as something that is  wrong--she's just the way she is. 

Some people in the group, though, are so irritated that she doesn't try. But what is gained from constantly trying to change things, in pursuing futile treatments that may not help? Christina has decided that she doesn't want to keep trying things that are painful and unhelpful. That's her choice, and that's her call. But it doesn't mean she's just flopping over on a couch and saying, "I give up! I shall Lay Here On My Bed For the Rest of My Days!"  

All of us eventually die. All of us will, eventually, have our bodies betray us. Christina's mother says in the book that Christina is just the way God made her. And that's the way I feel, too, about my body. This is just how I am. Christina accepts it, and goes on with her life.  

Now, does that mean I don't try to fix things? Well, no. I wear glasses and got braces and I do love useful medical treatment that keeps me alive. :) But there are also things that I know I won't do, treatments I won't try, and bridges I won't cross, in the name of keeping me alive or "fixing" things.

Some Deaf people will not have cochlear implants. It's actually a big topic in the Deaf Community (or it was--not sure about now?). Do we try to "fix" a disability (being unable to hear), or do we see it as a disability at all? We know how I came down on that side of the question, but again, I wasn't born Deaf. And a CI is a bit different that a situation that really can't be fixed or cured or changed.

Have I given up? No! But I have accepted my body the way it is. I have accepted its limitations and I'm not willing to do things that may or may not "fix" me. 

This isn't giving up--it's just acceptance. And that takes work. It's hard to try to be even-keeled about things like maybe never having my own children. It's taken years of work. But without acceptance, I'd be constantly chasing some ideal of physical perfection that just isn't possible. I'd be wasting money and time. There are other things I'd rather do, honestly, than sit in another doctor's office. 

As Christina's body declined even further, she still tried her best to do her everyday things. To some, her world was very small, because she never lived anywhere but her small town in Maine, and even then, nowhere by her family's farmhouse. She lived with her family all her life. But by saying that her life was less than, or sad, or that she gave up--that denies her any agency in her life. It denies her hard work of acceptance and living her life on her terms. 

Does her life make other people uncomfortable? Well, probably. She didn't use a wheelchair so she dragged herself around, propelling herself by using her arms. This was probably quite...well, odd, for a lot of people. But too bad for them.

I remember when I needed insulin right after transplant, and a friend of mine said "ew!" when I injected myself at the dinner table, in my own house. "You don't have to look," I shot back.  Normally, if I went out to dinner and I was with people, I'd go into the bathroom and inject myself. But in my own house? Nope. Not happening. 

People used to complain about my CF treatments. "When are you going to be done with that?" Like the nebulizer was some sort of icky contraption, or a poisonous animal. "When I'm done."  I had a roommate once who didn't want my machines in the bedroom we shared; she wanted me to put them in the living room of our townhouse. I didn't want to be doing my treatments in front of total strangers, or getting lots of nosy questions about what these machines were and why I needed them. I wasn't some sort of sideshow exhibit. 

I don't need to make my life easier for other people. I need to make my life work for me. And so did Christina. 

Thoughts on Health Care/ACA/Etc Part One: Some background

I realize that's not the sexiest title, but I thought that it might be worth sharing some of my thoughts on health care, as someone who both uses the health care system extensively, and someone who worked in government. And since, if I tried to make this one post, the post would be approximately the length of Moby-Dick (and about as fun to read), it's going to be several posts. 

Today: My background in health care and using the American Health Care System 

Tomorrow: Working in Government and Seeing How Things Work (ie, nothing is free!) 

Day Three: Suggestions

I wasn't diagnosed with CF at birth. I was diagnosed when I was 11. However, I had epilepsy before that, and my first hospital admit was at the age of 9 months, so I've been using the health care system intimately for a long time. I always had insurance under my dad's work plan. Sometimes the plan would change and we'd have to deal with companies that weren't quite as good as others (Cigna, I'm looking at you), but I always had insurance. And it was insurance that worked, meaning it paid for the big things, like a two-week ICU stint my sophomore year of college, and lots of not-so-big things, like IV antibiotics at home. 

 I always knew that I had to have a job that would provide good health insurance. Salary wasn't as much of a priority as that was. Working for the government was ideal, because, while the pay was less, the benefits were good. I had three choices of health insurance plans. I chose the most expensive because I knew that my doctors at Children's liked them (meaning, they didn't have to argue with them too much), and they were what I'd had with my parents, so we were familiar with their coverage and co-pays and all that jazz. We knew how they worked. Like I said, this was the most expensive plan and took the most out of my paycheck, but that was secondary to having insurance that was good and would cover things, like the transplant I knew I was going to have soon.  

At that point--2004--I knew I had to have a job, because I couldn't stay on my parents' plan. Back then, you could only stay on your parents' plan through college. The details are sort of fuzzy now, but I think there was a way I could've stayed on their plan, or something, because of all my issues. 

The other option for health care coverage, if I didn't get a job or didn't want to get a job, was Social Security Disability Insurance (SSDI), but I never even considered that, because 1) I wanted to work, 2) I didn't consider myself disabled. Yeah, OK, so my lungs were crap and I spent a lot of time in hospitals. But I could work. I had a brain that worked, I was intelligent, and I was going to use my fancy degree, dang it! I never considered not working, or not going to college.  

So, I had a job, I had health insurance. My  plan paid for my transplant--the surgery, the hospitalization after, the rehab, the drugs. It was good. It did what it was supposed to do, in short. I went back to work and continued to have health coverage. And I still, today, have health coverage (although not as good). 

Obviously, I am a person who requires lots of health care stuff. I require multiple medications to survive (although not as many as I did pre-transplant. Yay!). I wear contacts. I have a cochlear implant. I see a pulmonologist, a cardiologist, an ENT, a dermatologist (because my skin cancer risk is about 10X as high as the general population), a dentist, and an optometrist. In other times during my life, I've seen a rheumatologist, a neurologist, a plastic surgeon, doctors who treat burns, a dental surgeon, orthopedists (two broken bones), and a general surgeon (for when my port was implanted). It's easier to list the departments I haven't been seen in at Children's than the ones I've seen.  I am expensive to keep alive. 

And even with insurance, my family and I have to pay for things. A cochlear implant upgrade? $10,000. Visits to the infusion lab at Children's for blood draws? A few hundred. Pulmonary Function Tests, chest X-rays, CT scans, and EKGs? Yet more money. 

Now, that's the insurance side of it. How about the waiting side of it? Do I ever have to wait for care?

No. 

That's the quick answer. The longer answer is, sort of. My ENT, for example, works at various hospitals. When I need sinus surgery, we do it at Children's because they are so familiar with me, and that's where my lung transplant team is. So if I need surgery, I might have to "wait" if he doesn't have an immediate open slot on a Children's Surgery Day.  Even then, though, it's maybe a month or two month wait, and that's because my sinus surgeries are generally not urgent deals. They need done , but it's not like I'll die if they're not done quickly. 

I have never had to wait for any sort of testing or treatment. That's excellent. And it's almost always been like that, with any insurance I've had throughout my life. 

I obviously have a stake in how health care is "done" in this country. However, that doesn't mean that I fell to my knees in gratitude when the ACA was passed. But that's for tomorrow, when we talk about what I learned when it comes to government and health care. 

Seven Quick Takes No. 131: A Royal Friday!

I. 

Happy Sapphire Jubilee to Queen Elizabeth II!

(Portrait of the Queen taken in 2014)

A sapphire jubilee is 65 years on the throne, which Queen Elizabeth reached on Monday, the 6th. No other British monarch has ever reigned so long!. 

The sapphires she's wearing in the portrait  were a wedding gift from her father, George VI. (We'll talk about her wedding in a bit!)

This may be my favorite current (ish) portrait of the queen. She looks regal but also like she's about to smile or laugh. 

II. 

Victoria, currently on PBS, is about Elizabeth's great-great-great grandmother. And while I love Queen Victoria, who is the second longest reigning monarch after her descendant Elizabeth, I'm not a huge fan of the series, because of the liberties that are being taken with the facts. 

I know that in these types of things, some liberties must be taken because 1) there isn't enough money to cast everyone who really existed; 2) we have limited time, and 3) there has to be a good storyline to hook viewers. I know all that, and I'm still annoyed by Victoria. 

Here are some of the bigger points that are being fudged: 

III. 

Prince Albert around the time of his marriage to Victoria. 

Albert was not nearly so whiny. He didn't want a title when he married Victoria; he wrote that "It would almost be a step downwards, for as a Duke of Saxony, I feel myself much higher than a Duke of York or Kent."  He did become an HRH before he was married to the queen (His Royal Highness) and in 1857 Victoria named him prince consort. He knew when he married Victoria that he wouldn't be king, and he couldn't be a peer, and that did lead to the problem of finding things to do. In a letter written in May 1840, he said," I am very happy and contented; but the difficulty in filling my place with the proper dignity is that I am only the husband, not the master in the house." (This is a problem that Philip Mountbatten would have with his queen wife, as well.) However, once Victoria became pregnant, he began to take a much larger public role. 

It is true that Lehzen and Albert didn't like each other, which culminated in a brouhaha a few years after the wedding. 

As far as Albert's allowance, it is true that Prince Leopold, the last person to marry an heiress presumptive, received £50,000 pounds. Albert received £30,000 (Not "half as much" as the series contends.) (In comparison, Prince Philip receives a whopping £395,000. Wow!) Part of the problem was that Leopold spent his allowance on mistresses after Charlotte died, so yes, Albert was probably being punished for his predecessor's profligacy. 

But anyway, the point is, Albert was not nearly as whiny as the series makes him out to be. He knew what he was getting into; he was well-prepared by Leopold and Baron Stockmar (whom I'm very sad is missing, since he was a key advisor to both Victoria and Albert.). 

IV. 

Leopold painted as King of the Belgians. 

Speaking of Leopold: Victoria and her uncle were quite close. She considered him her "best and kindest adviser", as she wrote in her journal in 1835. There was none of this coldness and stiffness that the series gives us. 

V. 

Honorable William Lamb, Second Viscount Melbourne 

Also, Victoria never had romantic feelings for Lord Melbourne. Ever. Full stop. Melbourne was 63 when Victoria ascended to the throne! She did say that he was like a father to her, and the press did call her Mrs. Melbourne, but that was mostly cattiness about her closeness to her prime minister. Remember that Victoria's father died when she was a baby, and Lord Conroy, her mother's "advisor", was not someone she trusted at all. She didn't have a lot of strong male role models in her life, or people who treated her like an adult (Her mother slept with her every night and she was forbidden from walking down a staircase without holding someone's hand!), other than Leopold and Stockmar, but they weren't with Victoria all the time, obviously. 

So, essentially: fact-check while you watch. :) Or, if you're not like me and just don't care, ignore all this. :-P

So now that that's cleared up, let's talk about fun stuff: Weddings!

VI. 

Victoria and Albert's wedding in the Chapel Royal of St. James Palace, February 10, 1840. 

Victoria did start the fashion of white dresses for brides. Prior to that, most women married in their "best" dress, no matter what the color. Most of them didn't have the money for a totally new dress that would only be worn once, and in such an impractical color at that! But Victoria did. 

The dress was made of heavy silk satin and Honiton lace (Honiton being city in Devon, England). The dress's satin was woven in England and had an 18 foot train! She did wear a diamond necklace, and sapphire brooch that Albert had given her the night before the wedding. (Not seen here in the painting.)

(And the Chapel Royal is essential a room, not a grand church, like the series showed us.) 

VII. 

When her great-great-great-granddaughter married Philip Mountbatten on November 20, 1947 (a few years before she became queen), Elizabeth's dress was made of Chinese silk and English satin . The royal couple was married in Westminster Abbey. (A grand church indeed!) 

Since wartime rationing was still in effect, Princess Elizabeth had to save clothing ration cards to buy the material for her dress. The government did grant her 200 extra coupons, probably thinking that the investment in the heiress presumptive's wedding gown was worth it. The dress had a 13 foot long train, and was embellished with crystals and pearls. 

The Princess was just as radiant on her wedding day as her august ancestor. 

Princess Elizabeth and Philip on their wedding day. 

Here's Queen Elizabeth in her coronation gown, which was designed by Norman Hartnell, who also designed her wedding dress. 

This dress took eight months to research, design, and make. She also wore this necklace, which Victoria also wore. 

As gorgeous as these photos are, this is a much cozier one. The portrait was taken by Annie Leibovitz to celebrate the Queen's ninetieth birthday. 

Isn't this sweet? 

From L-R: James, Viscount Severn (8 YO) and his sister, Lady Louise (12 YO--they're the youngest of the queen's eight grandchildren and are the children of Prince Edward); Mia Tindall, age two, holds the queen's handbag; Princess Charlotte, as the youngest great-grandchild (11 months, here) is on the queen's lap, with her brother George (2 YO) next to her. The other two girls are Savannah and Isla Phillips (5 and 3 YO, respectively). 

Mia is the daughter of Zara and Mark Tindall (Zara is Princess Anne's daughter), and the Phillips girls are the daughters of Peter Phillips, who is Princess Anne's son. I love Mia with the handbag! (And James is so insouciant in his eight year old way.) 

So there you have it--enter your weekend with history, jewels, and queens! :) 

Seven Quick Takes 130: Seven Books I'll Read in 2017

OK, let's get real. I'll read a LOT more than seven books in 2017. But here are ones currently on my "to read" list: 

I & II

The God of the Hive and The Pirate King, both by Laurie R. King: these are volumes 10 and 11, respectively, in the Mary Russell/Sherlock Holmes series that I've been devouring since I read the first one in October. Book number 12 is coming in the mail but hasn't arrived yet. So I guess that'll be book eight! 

III

Commonwealth, by Ann Patchett: I love Ann's writing, and I'm excited to dive into this one since I've heard such good things. 

IV

The Alexander Hamilton biography by Ron Chernow that everyone is apparently reading. Also a Christmas gift. 

V

Kim, by Rudyard Kipling. A book I haven't read, but am curious about. In that same vein...

VI

The Forsythe Saga, by John Galsworthy. My friends have raved about this one and I keep trying to start it but this year I'm gonna do it. :) I feel like, as a person who majored in English literature with a concentration in Brit Lit, that I should be well-versed in All of the Oxford World Classic Brit Lit novels. So, this one is getting read. 

VII

Finally Fortune's Rocks, by Anita Shreve. Got it for a steal at one of my favorite independent bookstores, and it keeps sitting on the to-read pile. So I'll recuse it! 

What about you? Any good books on your lists? 

2017 Goal Setting

The last week of the year usually brings a few things for me--time with family, lots of books, and goal setting for the new year!

Ever since I discovered Lara Casey's powersheets, I've adored goal setting--and I've actually been getting things done. Her shop is called "Cultivate what matters", and that's what the powersheets do. Without them, there's no way I'd have finished my manuscript, written book proposals, sent queries, or upgraded my website/social media presence. That's probably the biggest thing the powersheets have done for me, but I've made progress in other ways, too. 

(And, no, I don't get paid to say this--I just love powersheets!)

I got my 2017 set in November and spent a few days doing the prep work. This is one of the best parts of power sheets. It's where you really get down to the reasons why you want to do things--why do you want to save money, or take that trip, or get that thing? What's your real motivation? Are you afraid to do big things? What's defeated you in the past from reaching your goals? (Lara's current blog series dives into this stuff, too!) 

So after doing the prep work and figuring out my "big" goals for the year, I then break those goals down into monthly, weekly, and daily goals for each month. The idea is that everything you do here is intentionally helping you meet a goal that will help you do what matters in your life. 

With all that said, here are my goals for 2017: 

1. To deepen my prayer life through more regular attendance at daily Mass and more times of daily prayer/devotions. If I don't have a deep, solid relationship with God, nothing else matters. 

2. Pay off the rest of my debts and grow my savings account. One of the things I really like about post-transplant life is my ability to travel, and I want to do more of that--and traveling takes money! So by cutting back on buying things I don't need (I'm doing the contentment challenge in January to help with this), I'll be able to pay off debts and have money for fun things like traveling! Again, there has been progress in this area, but I need to be more consistent. 

3. Be physically, mentally, and emotionally healthy by instituting regular workouts, weekly meal planning, and keeping up with my journal (I've been letting my journal slide of late. I don't want to do that!). I have grown in this area this year, but it's erratic growth. I need to make it a much more permanent part of life.  

4. Get the book published, offer a ebook for sale, grow the blog, and write what matters. I want to write things that matter to the people who read them--things that help you, inspire you, make you laugh, whatever. I don't want to write click bait. I want to write things that improve the lives of my readers. (So tell me what you want to read, OK?) 

5. Fuel my creativity by continuing to learn Italian, working on new art and knitting projects, and, of course, reading. I love learning new things! 

6. Simplify my space: Less stuff, more beauty, more organization, and increased hospitality. I made big progress on this this year as well--cleaning out my closet, taking many books to the secondhand shop (along with CDs and DVDs). So I'm proud of the progress I've made here. But there's more to do!

So those are my six big goals for the year. Each month, these get broken into monthly, weekly, and daily things I need to tend (in powersheets parlance). Daily things are things I want to make a habit--like exercise, checking my checkbook against the online transactions, reading the Bible for 10 minutes every day, practicing Italian. Stuff like that. 

Weekly things are things that get done every week: Daily Mass at least once, making a meal plan, doing a basic clean of the house, putting a certain amount of cash into my emergency stash here at home. 

Monthly tending are bigger things that I can do throughout the month. Some examples from my January tending list are editing my Nano 2016 novel, going to confession, completing a 30 day exercise plan.  

Some things are broken into monthly and weekly categories. The contentment challenge is broken into three months, with a weekly topic in a corresponding book. So there's a monthly "task", but also something to read each week. So the weekly devotion is written in my weekly tending list, so I don't forget to do that. 

I also write the daily tasks into my planner. That also helps keep me on track, because if my powersheets aren't easily available (though I always keep them on my counter, so I can find them quickly!), I can see at a glance what I'm doing that day. It's also great for things like the weekly cleaning--I can dust on Monday, vacuum Tuesday, etc. 

I find this is a better system than making resolutions. Resolutions are OK, but they usually don't have a plan or a why attached to them. "Lose 20 pounds" is a nice resolution--but how to do it? By going through the powersheets, I have an idea of how to do the things I want to do, how to achieve my goals, and how to be accountable to myself. I only have so much time here and I want to use it to the best of my ability!

Do you have goals for 2017? What are they? 

Seven Quick Takes No. 129: Happy birthday, Jane!

I. 
Today is Jane Austen's 241st birthday!!! Yay!

This is definitely something to celebrate. So here's some links to help you celebrate, too! 

II. 

Here is one of my series on Jane's writing, if you want to catch up: 

Jane, Aristotle, and Aquinas

Also, Jane's characters figured prominently in my Seven Characters post! 

III. 

A wonderful way to celebrate today is to watch Pride and Prejudice. The ONLY Pride and Prejudice. As in, the one featuring Colin F as Mr. Darcy. Because I do not acknowledge any others. :-P Keira Knightly is not Lizzie in my world. 

IV.

If you would like to watch a Jane biopic, there is Becoming Jane, which I recommend. Anne Hathaway and James McAvoy are fantastic. 

Anne Hathaway as Jane in Becoming Jane

V. 

You could also practice your instruments if you play any. Be like Marianne and play a "powerful concerto".  Or just listen to the Sense and Sensibility movie soundtrack, which is perfection. 

And since it's Christmastime (well, almost), we might wonder what carols would Jane have known? Here's a piece about Regency Christmas carols, and here's one from the Jane Austen Center. Also, Messiah was composed in 1741, thirty-four years before Jane was born, so she might have been familiar with some of the pieces. (It was first performed in Dublin, but had its London premiere in March 1743).  Her father was a clergyman, and the piece was performed in cathedrals around the country after the London premiere, so it might have been possible for Jane, or members of her family, to have heard it. 

Not familiar with some of the regency carols? I've provided some audio for your listening pleasure. 

VI. 

A little bit about Jane's family: her father, George Austen, was a clergyman who married Cassandra Leigh on April 26, 1764. Jane was the seventh of eight children and the second (and last) daughter--her sister, Cassandra, who was her best friend, was two years older than she was, and outlived Jane by twenty-eight years. 

The rest of the siblings were: Rev. James Austen; George Austen (who was severely disabled--either with epilepsy or cerebral palsy, we're not quite sure); Edward Austen-Knight (he was adopted by the Knight family as their heir, thus his last name); Henry Austen, Jane's favorite brother; Francis (Frank), who became a vice-admiral in the British Navy (giving Jane plenty of knowledge about the navy for her novels, especially Mansfield Park and Persuasion); and her younger brother, and youngest sibling, Charles, who also joined the Navy. 

Edward ended up being instrumental in the care of his widowed mother and unmarried sisters after their father died in 1805; he provided them with Chawton Cottage, where Jane did most of her writing, and where she died on July 18, 1817 at the age of forty-two.  (All of the brothers, though, helped support the women in the family after the reverend's death, with money and offerings of housing, etc.) 

VII. 

And finally, we must have tea! if you really want to drink tea like Jane did, get some Twinings, which was the brand she and her family drank! From the Twinings website: 

A century later, writer Jane Austen was a devoted customer because, at a time when tea leaves were sometimes mixed with tree leaves by unscrupulous vendors and smugglers, Austen could be sure of buying unadulterated leaves at Twinings. In an 1814 letter to her sister Cassandra, she mentions: “I am sorry to hear that there has been a rise in tea. I do not mean to pay Twining til later in the day, when we may order a fresh supply.” 

She visited the shop to buy tea for herself and her family when she was in town (meaning London) visiting her brother, Henry.  So, we must have tea on Jane's birthday. Their Lady Grey tea is an excellent choice for afternoon tea drinking.

 Here's a piece on tea in the Regency Era , and one on tea in her novels. 

There is also the delightful book Tea with Jane Austen as well as At Home With Jane Austen.  One day I WILL get to England and do the Jane Austen tour. My entire bucket list is basically that. 

Happy birthday, dear Jane!