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. 

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. 

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. 

Circle of Life

“We are not some casual and meaningless product of evolution. Each of us is the result of a thought of God. Each of us is willed, each of us is loved, each of us is necessary.”

— Benedict XVI

Friday the annual March for Life was held in Washington, D.C. 

It was also Holocaust Remembrance Day. 

And the day that President Trump signed an executive order lowering the number of refugees that can enter the United States, as well as denying entry to certain refugees for 90 days, and a host of other things pertaining to refugees around the world. 

What do these things have in common? 

They're all about life issues. 

We in the pro-life movement are often accused of only caring about people "before they're born", and that if we really cared about people, we'd make contraception more widely available, so we wouldn't "need" abortions. We'd also support social programs that help people instead of cutting them. 

There's a lot to untangle there. And I wasn't even going to write about this, because people know how I feel (I don't really sugarcoat it). But I feel like there needs to be some sort of response to all this, even if it's my inadequate one. So here we go. 

First, there is no barrier to getting birth control. I really don't know why people think this. Condoms are available at any corner drug store or grocery. There was a basket of them in the entryway of my campus health center in college, free for the taking. Birth control pills can be prescribed by any OB-GYN in the nation. Yes, you have to pay for them. Shock. I'm of the opinion that things like birth control and Viagra should not be free, especially when people have to pay thousands of dollars for drugs that keep them alive. If you want to have sex, and you don't want to get pregnant, take the proper precautions. Be responsible. If you do get pregnant, abortion is not "health care." It is not birth control. It is killing a human being. Full stop. So, in order to avoid pregnancy, either don't have sex, or be responsible. And don't tell me that you can't afford a condom. And if the guy won't wear it, then, as a self-respecting woman, you need to dump him fast, because he is not a responsible dude who cares about you and the potential consequences of actions. Don't be dumb, ladies. Please. *

We care about unborn children because they need someone to care about them. They have no voice. They can't make cool YouTube videos or get covered by CNN as they hold a rally. They only have us. And if the most fundamental right--the right to exist--is denied, then how can we say we're for peace anywhere else? Is the logical failure apparent yet? It should be. We have to start at the bottom, at the bedrock. All life is worthy of being protected. 

Supporting social programs does not mean that you support government programs. Most of the pro-life people I know (If not all of them) also support pro-life charities that help pregnant women. They're just not government-run programs. They're private charities/organizations. Some examples are: 

Sisters of Life

Mary's Shelter VA

Pregnancy Decisions Health Centers

These are just a very, very few places. But there are so many more, that exist all over the country, and are spreading. Don't say that the pro-life movement doesn't care about these children and these women. Because we do. Small government conservatives generally don't want government doing a bunch of things. We want communities to do them--and they are. 

Now, does that mean that there shouldn't be a basic floor that people don't fall beneath? Sure. But that's sort of outside the scope of this discussion, and good-hearted and good-intentioned people can disagree on how best that should occur. 

Now, if we are to be pro-life in the best sense that does mean respecting all life--realizing that all life has value. That does mean that the death penalty has extremely limited applications (as the Catechism of the Catholic Church says, here). That means we don't kill people who are old, or terminally ill. It does mean that we should help refugees. The vetting process is intense.  Now, does that mean that nations should let in whoever wants to come to their country? Well, probably not. States are sovereign and they are allowed to make decisions that they feel are necessary to protect their people (and immigration laws exist for a reason. But we're talking about refugees, here, not "regular" immigration.) But the Church says in the catechism that: 

2237 Political authorities are obliged to respect the fundamental rights of the human person. They will dispense justice humanely by respecting the rights of everyone, especially of families and the disadvantaged.

The political rights attached to citizenship can and should be granted according to the requirements of the common good. They cannot be suspended by public authorities without legitimate and proportionate reasons. Political rights are meant to be exercised for the common good of the nation and the human community.

Refugees are certainly among the disadvantaged. We shouldn't act out of fear, but out of logic, out of consideration for all sides. And this extends to administrations on both the left and the right. 

And Holocaust Remembrance Day? 

Jews tried to flee Europe in order to escape Hitler and the rise of Nazism. And the U.S. did not respond well. The book Alex's Wake tells the story of Jewish refugees who were coming to Havana, but were denied entry there and in the United States and Canada, and forced back to Europe and the Holocaust. 

Anne Frank's father tried to arrange immigration to the U.S., but was denied. And we know how that story ended.

We look back on these stories and ask, how could the government have made those decisions? Probably because of fear. How could the U.S. government incarcerate thousands of Japanese-Americans? 

I think we have to learn from history. And we have to support life. I can't imagine being one of the people in the airport, thinking they're going to be a place of safety, and being told that they can't leave--that they're doomed to stay in a war zone. Think about that for a second. 

We have to protect life in all its stages. We cannot allow people to become "other" because we are all children of God. No one is other. 

We cannot look away. We can't turn aside. 

We might disagree on policy decisions--how best to educate children, how best to provide health care to people, what the tax rate should be. But we cannot disagree on the fact that all of us are human beings, and all of us are God's. We are responsible for each other at a basic level. 

Babies. Jews. Refugees. 

People. 

 

________

* That being said, I'm Catholic, and I don't believe sex outside of marriage is moral, nor is the use of artificial birth control inside of marriage. I know not everyone feels that way. :) I'm talking from a policy perspective here, not a religious one. 

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? 

Reviewing the Situation

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

So, being off prednisone is fun. Kind of. 

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

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

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

Now I figure I better give myself the month. 

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

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

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

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

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

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

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

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

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

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