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I've been writing for a few years now, and I think it's time to do my first-ever reader survey!
I want to know what you like to read about here, what you don't like to read about, things you wish I wrote about....really anything. This is your chance to tell me your opinions!
So just go here, and fill out the survey! Thank you muchly!
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.
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:
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.
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.
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!
January seemed to go on forever, but February flew! Wow! I can't believe it's March. So here's how my goals went last month, and what's on tap for March!
My goal was to finish the emergency fund this month. That didn't happen, because I had to make a withdrawal from my emergency fund--my printer died. :( So while I was unhappy about having to use the emergency fund, I was glad it was there! I've continued to use the every dollar app to keep track of my budget, and reconciled my checkbook daily with my online bank account.
March goal: Finish baby step one!!
Goal for the month: To write a new proposal.
Progress: Well.....this didn't happen. Sigh. The month sort of got away from me in this regard. I know I have to make progress here. I'm tentatively moving this to March, and am going to schedule a writing session out of the house (meaning, at a Starbucks or somewhere laptop friendly) where I can get this done. Writing was done in February--just not this particular writing.
March goal: At least one two-hour block of time outside the house working on my proposal. It doesn't have to be finished. But I have to dedicate at least two hours to drafting one.
February goals: Attend the Columbus Catholic Women's Conference; Mass weekly; confession on First Friday; holy hour; continue daily lectio!
Progress: I made some decent progress here. I attended the conference and had a great time. I'll have to write about it soon. (Note to self). I did make it to Mass last week! Yay! I went to confession! Yay! I had a holy hour! And I've been doing daily lectio! So some great progress here.
March goals: Weekday Mass once a week, confession once a month, holy hour, daily vespers (evening prayer).
February goal: Be better about exercising. Something EVERY DAY, even if it's only for five minutes.
Progress: I did pretty well here! I'm looking at my PowerSheets and more often than not, the box for daily exercise is checked. One of my big things is trying to always meet my daily move goal on my Apple Watch. Even if I don't exercise, I want to hit that move goal! I've been doing that, and the goal is steadily increasing, so that makes me feel good.
Last week, I also re-upped for yoga glo. I'd done this years ago, but now I really think I need that daily outlet for practice. I've been doing the classes, and I find it's a great way to start or end my day. Even if the practice is hard (like this morning's was!), it's still learning, it's still growth, it's still movement. And I feel better when I've done it. I've also been making a conscious effort to get enough sleep. I need at least nine hours. I feel better when I get it. I function much better. So, that's an important part of this, too.
March goals: Daily yoga glo classes, weekly meal planning, go to bed by 10:00 (be IN bed, not necessarily asleep).
February goals: Keep working on commissions!
Progress: Definitely good progress here. Finished one, am about to finish another, and then I have two more after that! Whew!
March goals: Keep trucking. :)
February goals: Doing Nancy's Contentment Challenge again, February through April! I've made progress here, but I want to make more. It takes a long time to stop comparison and perfection from taking up brain space. Also, be consistent in zeroing out every night!
Progress: Started the Contentment Challenge on Ash Wednesday. It's quite Lenten. :) I might have to add some weeks to it because my birthday is during the challenge! We'll see. Every Thursday I read the next week's devotional in Nancy's ebook.
Zeroing out was...iffy. I HAVE to get better at this. I'm thinking I'll set an alarm at 9:00 on my phone, to get up and do it. I do like the house better in the morning when I do this!
March goals: ZERO OUT (with alarm at 9 pm); zone clean weekly; weekly surface clean; contentment challenge; finish Emily Ley's simplify challenge!
February Goals: Continue watercolor class; continue Artist's Rule; work on shawl.
Progress: Wow! I finished my watercolor class, but I might have to go back and do all the lessons again. There was just so much great content it's going to take awhile to soak in! I'm still reading Artist's Rule. And the shawl....
It GROWS! I did a ton of work on it yesterday. I'm in to the last two sections!
March goals: Shawl--finish? Maybe? Continue Artist's Rule.
As a final reflection, this is something I wrote when I was doing my March powersheets:
There were times in February when it seemed hard to keep trucking on my goals. It's so much easier just to stay in the same pattern and not push myself to grow. But that's not what I'm here for. I am here to grow! So this is my reminder to myself.
So, um, Happy Ash Wednesday? :-D
I do like Lent. We'll talk about that more in a second. First: Yarn!
This is a completed Barton Cottage Crafts commission--it's my signature basketweave scarf in the weathervane colorway. The colors are much richer in person. In the line this is my "Jane Bennet" color--I think it suits Jane quite well. :)
I'm currently working on a shawl for another customer, in a deep yellow color. When I have more of it to show, I'll post a picture. At the moment, it's a very small triangle!
My shawl is coming along gorgeously! I'm finally into the blue stripes!
AKA, what I'm doing for Lent.
1) Giving up book buying (except at the Catholic Women's Conference this weekend--and actually, my book buying has dropped off a lot this year since I'm focusing on my financial goals. So go me!)
2) Attending weekday Mass at least once a week
3) Confession every other week
4) Doing Nancy Ray's Contentment Challenge again. You can read ore about it on Nancy's blog here and here . Here are the first month guidelines! I think Lent is a perfect time to kick this off.
And of course, Above All. You can still join us! Order the book, pop into the blog, or join us on facebook, twitter, and instagram.
It's Stitch Fix Time!!!!!!
I've switched to an every other month Fix schedule, so that's why it's been awhile since we've had one (December, in fact!). But I am always excited to share my latest box with you guys!
If you're new to my Fix posts, here are the previous ones, and here's how it works :
Stitch Fix is an online styling service that delivers a truly personalized shopping experience, just for you. Fill out your Style Profile and a personal stylist will hand pick pieces to fit your tastes, needs and budget—and mail them directly to your door. Each box contains five items of clothing, shoes and accessories for you to try on at home. Keep what you love, send the rest back in a prepaid USPS envelope. Shipping and returns are free—even for exchanges!
The Style Profile is really detailed--it's just not stuff like your weight and height. They want to know as much about you and your style as possible, from how much skin you like to show, to your proportions, and what kind of trends and styles you'd like to try. You can even set a price range for individual categories and ask them not to send certain things. For example, in my Style Profile, I ask for no bracelets, rings, or just about any type of shoe other than a flat or lowish heel. (Stilettos are NOT my friend.)
There's also a place to add a link to your Twitter, Facebook, Instagram, or Pinterest Style Board, so your stylist can get a feel for what you like. Finally, there's the style note, where you can ask for specific items, talk about events that are coming up (I mentioned my brother's wedding in the spring), or generally discuss your style or anything you'd like to see in the box.
So, after you fill out the Style Profile, you will pay $20 as a styling fee. This is taken off any items you decide to keep in your Fix, so I look at it as a down payment on whatever's in the box. Keep in mind that a real person will personally select all five items that come in your box for you, based on what you've told him/ her.
When the box arrives, it's time for the fun--trying on pieces. This is where I think Stitch Fix has a leg up over normal shopping. Since the box is shipped to you, you have your entire wardrobe at your disposal when you get these pieces. You can see right away if the things that were sent work with items you already have! You don't have to stand in the dressing room and think, "Do I have anything that will go with this? How will this look with my favorite heels? Do I already have things in this color?"
So, with all that out of the way, here's what I got in my box this time!
Styled with White House Black Market jeans (check out the length! They fit! :-P), and Clarks flats
This isn't a bad sweater. Generally I really like the Hawthorn 41 line (it's one of Stitch Fix's exclusive brands). However, I didn't feel this color did anything for me, and it was sort of meh on.
(You will see this again with another item, per the stylist's suggestion.)
Verdict: Returned
Here's what you need to know about my feet: I have terrible ones. I have pretty high arches, plus BIG bunions. Not little bunions. Big ones. Huge. Not bad enough to require surgery, but not far off, either. So pointy toed shoes with no support are not shoes I can wear, no matter how cute they are. And these shoes were cute. But I can never wear them. I will say I did like the style of shoe, with the strap around the ankle, which I didn't think I would like.
This dress was very nice. It was well-constructed, and I liked the scallop detailing and the color. But I was looking for dresses for my brother's wedding, and this dress is one I would've worn if I still worked in the Senate and the General Assembly was in session--this is a "session dress". Conservative and lady-like. Which is fine, it's just not what I need most of the time anymore. And when I do, I have dresses like this.
Verdict on both: Returned
Now, this was a fun dress. Still had the scallop detail at the neck, has a twirly skirt, and is speckled with flecks of ocean blue, coral, and white, which make it an acceptable dress to wear to a wedding (Normally I NEVER wear black to a wedding. But this had enough color.). It's very comfortable and flattering. But is it fancy enough for my brother's wedding? I don't know. It is a lot of fun, though. I would wear it as a guest at a wedding, for sure. But....I think accessories will amp it up. The right jewelry, a bright colored cardigan for the ceremony (the bolero jacket type), shoes.....
In any case, this dress will be great for going out. I could even wear it for Easter or something. It's really fun and very much my style.
Verdict: KEPT
Item Number 5: Margaret M Deandra Skirt, $78
I have had TONS of luck with Margaret M. I had two other skirts from them (see my past fixes!), and I love them. They are all different, too. This one is more like starched cotton with some stretch, so it'll be great for spring and summer. And the colors are amazing. There's taupe gray, white, pale pink, navy blue, ocean blue, a deep turquoise, orange....it's just fabulous.
Here it is with two different tops:
J Crew top from my closet; Clarks flats
Verdict: KEPT
I had a $50 gift card from Christmas, so that went a long way in deciding what to keep. I was a little disappointed in this Fix, because I had wanted all dresses for my brother's wedding, and I told my stylist that. So this was a bit of a downer. I do like the clothes I got--it just wasn't what I was particularly in need of.
My next Fix is schedule to come right before my birthday in April, so we'll see what goodies are there!
If you want to try Stitch Fix, I'd be greatly appreciative if you'd use my referral link. You get clothes, and I get $25 of credit to use for more clothes, which means more fashion shows! Here it is.
And there is also Stitch Fix MEN! So if you have a guy in your life that needs style help, you can use my link for him, too!
Stitch Fix styles men and women, and also as pregnancy and plus sizes for the ladies! There is also Stitch Fix Luxe, which is brands like Kate Spade, if you're interested in that.
Big progress being made in my shawl (pattern: the drachenfels shawl)
I am finally done with the gray yarn! (In case you're just joining me here: I'm using Quince and Co. Chickadee yarn in Iceland (gray), bird's egg (light blue) and fjord (dark blue).
The next section of the shawl alternates the two blues, and I'm excited about diving into that. I love the fjord color and I can't wait to get to use it! (Well, really use it. I used it for one stripe, which you can see above!) Maybe by the time we get to the March Yarn Along link up, I'll be done? Probably not. But you never know!
I'm reading two books on psychology, habits, all sorts of goodness. Really enjoying both of them. (It's actually my second time through the Peterson book. This time I'm taking notes. The way he talks about suffering makes me want to do a Baptist "Amen!". So accurate.) Since I'm back to living in Hoth, today is a good day for knitting and reading!
Can you believe Lent starts next week? On Valentine's Day, no less? "Yes, hon, we'll celebrate Valentine's Day! But, you know, with macaroni and cheese and...no chocolate."
(I'm kidding. We can do it, guys! Just celebrate the day before and do Mardi Gras up big this year.)
Per usual, I have a few suggestions for how to prepare for Lent this year!
You can read previous posts I've written. And you can also read about it more extensively in my book, Catholic 101, where I talk a lot about Lent, as well as Holy Week! (Remember, if you're a blog subscriber, you have a code for 15% off! Lost the code? Email me and I'll shoot you a new one.)
Another one of my favorite Lent books is A Time for Renewal: Daily Reflections on the Lenten Season, by Mother Mary Francis, P.C.C. She's such an incredible speaker and writer, so able to cut right to the heart of the matter, that I highly recommend all her books. I pick this up every Lent.
And finally, there is Above All!
You all know how much I love this book. The price has been reduced on Amazon, so go get, if you haven't already! Profits are going to Adore Ministries in Houston to help with Hurricane Harvey relief.
This book is gorgeous, guys. We put so much heart and soul and dedication into it. And if you're giving up Facebook for Lent, we have a gorgeous website that will have the daily readings and questions to ponder, so you can join our community there!
Also, I'm going to have some Lenten recipes up on the blog to help with those meatless Fridays that are coming. Look for the first one this week!
What are your favorite Lenten resources?
Anne over at Modern Mrs. Darcy frequently posts about things that are "saving [her] life right now." They're not often big things, like medicine, but things that make life easier and more enjoyable. So I'm following her lead and joining her link up.
I've never been a "hair girl". I'm a makeup girl, not a hair girl. I can't even curl my own hair--I'm that hair impaired. But recently, I've been having to up my hair product game substantially.
After I had my skin cancers removed from my scalp last year, my hair and scalp needed a lot of love. So first I was using Living Proof products. And they were great, for awhile, but expensive, although they did keep my hair cleaner. A few months ago, I switched back to regular drugstore products.
"Big mistake. Huge!" As they say in Pretty Woman.
My hair is pretty fine to begin with, but when you're missing hair (as in, the hair is slowly growing back from here it was removed), you need to pamper what's still there. My hair was a MESS. Flat and gross and fly away. So I realized I'd have to go back to good products.
So this is what I'm using: Living Proof Timeless Pre-Shampoo treatment (to keep what I do have strong), Bumble and Bumble Thickening Shampoo and Conditioner, and their thickening spray (which I've always used). Are these pricey? Yes. Are they more than I'd like to spend on hair care? Yes. But I hate the way my hair looks and feels when I use cheaper products. BUT--they do tend to last a long time. You don't need to use much. I can get almost two years out of a bottle of the spray, for example.
And so, right now, good hair products are making me much happier about the state of my scalp (and it's making my hair happier, too).
I love knitting. This project I'm working on, above, is a shawl for me, and it's all in garter stitch, which is supremely relaxing. I am changing colors, so that can be fiddly, but overall, this and Party of Five on Netflix are perfect for relaxing in the evening.
See Party of Five, above. And movies!
After some weird sleep patterns at the beginning of January, I've finally gotten into a good rhythm. I am in bed--not asleep, but in bed--at ten, and then I'm usually done reading by 11. So I'm getting good sleep which just makes me so much happier, right?
It is. It just so is. I love water, and I love tea, but Diet Coke is fueling a lot of my writing/productivity right now!
Speaking of productivity....
6. Pomodoros
THESE are huge. I love them. I read about them in this Ann Voskamp post, and I've applied them to my life since the beginning of this year. It's fabulous! Basically, it works like this: 25 minutes of focused work--five minute break. Repeat this pattern four times, then take a long break of 25-30 minutes--then back to pomodoros. I can get writing, knitting, cleaning, and reading time in, without feeling like I'm slacking off somewhere or forgetting something. Truly awesome.
So, January is (FINALLY!) over, which means it's time for the monthly goal setting report, as well as telling you my goals for February!
(You can find my goals for the year here, as well as the steps related to each one!)
So, here are my goals, and the progress I made in January, as well as what I want to do for February!
If you're not familiar with Dave, there are seven baby steps, with the first three being really key. Those steps are:
1) Save a $1K emergency fund
2) Pay off all debt (besides the mortgage--which I don't have)
3) Complete the emergency fund with 3-6 months' of living expenses
I, obviously, started with number one--the $1K emergency fund.
Progress: I KILLED this goal in January! I'm so happy about this! I have $800 in my emergency fund, which means I will finish it off in February! YAY!!!!!! And the sense of peace is amazing. If I get a flat tire, or my computer dies, or something else goes wrong....I have money to fix it. That's such a relief!
February Goal: Finish Baby Step One! Continue to check in with my budget and reconcile checkbook daily.
This is a big goal with lots of tiny steps and moving parts. One of them is working on my blog and making myself more visible on social media. So, in that realm, I completely re-wrote my about page (using Ashlyn Carter's Copyright for Creatives materials--the course was actually last fall, but I didn't have time to do it then. So I did it now!)
February goal: To draft a new proposal. Yes. This is sort of scary! But I'm going to do it!
This goal also has some moving parts--things I want to incorporate, etc. I did make some progress here: I prayed with my Bible (lectio divina!) almost every day in January. That's huge for me. I was also really good about saying the Divine Mercy Chaplet. I didn't get to Mass during the week, so that's a fail. But I know I will this week--I'm getting back on the First Friday horse, and going to confession then, too.
February Goals: Attend the Columbus Catholic Women's Conference; Mass weekly; confession on First Friday; holy hour; continue daily lectio! (Daily lectio will be easier because Above All starts on February 14!)
So, this was hard. This month was really cold, but then we would have warm spells. But my weight has been stable, which is good. I haven't lost, but I also haven't gained. AND tonight I fit into a smaller jeans size! So I'm making progress here, for sure.
February: Be better about exercising. Something EVERY DAY, even if it's only for five minutes.
Progress: I finished scarves and mailed them out last month; I'm currently working on a commission and have three more in the wings! So good progress here!
February goals: Keep working on my commissions!
Progress: I am just about done with Emily Ley's Simplifying Challenge--the only thing left are two kitchen cabinets! Yay! I need to be better about "zeroing out"--setting things up for the next morning (making coffee, clearing the table, etc.). I was inconsistent in this last month. I was good about the weekly chores, though. Star for me!
February Goals: Doing Nancy's Contentment Challenge again, February through April! I've made progress here, but I want to make more. It takes a long time to stop comparison and perfection from taking up brain space. Also, be consistent in zeroing out every night.
Progress: I've started taking a watercolor class, and I LOVE it. It's hard, but it's good hard. I can already see improvement in my technique! I've also been re-reading The Artist's Rule, and it's a great inspiration for me to incorporate creativity into my daily life. Finally, I'm working on a new shawl, which you've seen in the yarn alongs:
Part two! STRIPES!
This is such a great project and thank you, Aunt Sue, for helping me with it at Christmas! :) This is a great way to stretch my knitting skills and create something pretty for myself.
I've also joined a writers' group, and that's going to be really helpful, I think!
February Goals: Continue watercolor class; continue Artist's Rule; work on shawl.
So all in all, not a bad January! I'm pretty pleased.
How about you? Did you make progress on goals/ resolutions in January?
It's no secret that I love to read. I've loved it ever since my mom first read to me as a toddler; I was the kid who snuck books under her desk in school, and read while I should've been getting ready for Mass, or when I should've been sleeping. Books are life.
So you'd think that the practice of lectio divina, "holy reading", would be the easiest type of prayer for me to practice.
You'd be so, so wrong.
I am terrible at lectio.
Before I tell you why I'm terrible at it, I should probably explain what it is. As I noted, it means "holy reading." It's a way of praying using the Scriptures. Essentially, you read (lectio); you meditate on what you read (meditatio); you pray about what you read (oratio), and then you figure out how to put all that into action (actio). It doesn't sound hard, right?
Except for me it is.
First, there's the reading. What the heck am I supposed to read? The Mass readings? Go through the Bible chronologically, only to falter when I get to Leviticus and Numbers and lists of names and other rosters? Start with Matthew and work through the New Testament and then maybe try the old?
And what if I read and nothing comes to me? I read, and read, and read....nope, God, sorry, nothing's hitting me. That's actually my biggest problem with lectio. I read. And I read. And nothing hits me. There's no inspiration. How am I supposed to pray with that?
In Advent, I had a pretty big breakthrough. The Advent journal, Rooted in Hope, was a real, hard core introduction to lectio, and it helped me immensely.
First--because there are readings given. There was a featured verse, and a few others. I didn't have to worry about what to read.
Second--the steps were all broken down, and easy for me to see, to ponder, to do.
At first, I had to re-read the passages a few times. I picked a word, an idea, that spoke to me. But some days it was harder than others. That's OK. I just kept doing it.
Lectio also requires a bit of background--and this is hard, too. In the first step, you're supposed to do some analysis: what is actually happening in the passage? Is Jesus talking to somebody? Who is Paul writing to, and why? Who is speaking in this excerpt from 1 Kings? That's where a good Bible dictionary, or study bible, is so important (resources at the end of this post). Because this is a big key--knowing what's happening in what you're reading.
Here's an example: The familiar reading from weddings, 1 Corinthians 13. Love is patient. Love is kind. Yada yada. We've all heard that a million times. But if you know that Paul wrote that to the Corinthians because they were fighting among each other, because there was disunity, and arguing, and strife, and confusion--doesn't it take on a whole different tone? I know it did to me. All of a sudden, Paul's letter is real. It speaks to me in the twenty-first century. Aren't we all in strife, all the time? Aren't we fighting amongst each other? Paul wasn't just writing some nice platitudes. He was giving solid advice to people in the midst of bickering and in-fighting.
So, keeping with this example: You would read 1 Corinthians 13. You'd do the lectio on it--you'd say, oh, OK, Paul is writing to these people, who are fighting amongst themselves. Then, the meditation. How does this apply to me? Who am I fighting with? Can I apply these concepts there? Who needs more love from me? Where am I not being loving?
Then, oratio, prayer. Talk to God about what you're thinking. Ask Him to help you apply this to your daily life (actio, the application, the action). "God, I know I need to be more patient with XYZ. It's hard for me. But I know that's what you want. I know that living that way will be a true expression of the Christian life I'm trying to lead. So when I want to swear or yell at this person, help me to be kind. Help me to be patient. I won't be perfect--but with Your help, I will try. I will make progress."
The actio is in the prayer, right there. You are going to be nicer to XYZ--you won't snap at her, you'll keep your patience, whatever.
You see how that works? To me, the key is the lectio. It's knowing what the text is really saying, what its implications are.
As you know, I'm a part of the Take Up and Read team, and we've published our Lent study/devotional, Above All. (In the photo at the top) Every day, you'll get lectio passages--and notes. I did the notes, and it wasn't just to help readers, it helped me! I learned so much as I researched these books of the Bible! It's a beautiful companion for your Lent, and I'm so proud of it. It starts on Ash Wednesday (February 14!) and goes all the way to Easter. There are pages for journaling, an examination of conscience, essays, and more. And the profits will go Adore Ministries in Houston to support ongoing hurricane relief efforts!
If you haven't gotten your copy yet, you can get it here. If you have any questions about it, or about lectio in general, let me know! I'm not an expert, but we can figure it out together.
Lectio resources:
Hi y'all!
So we've gone from Hoth, to spring, to Hoth, to--spring. Sort of. :) It's not bitter cold but it's not in the fifties. Dare I say it's...seasonal? But it was great to have a thaw and really clean the house and take out trash from decluttering! And when it's cold, you have time to be creative inside. So that's what I've got this week--the results of forced staying in!
First, in the Barton Cottage Crafts department, this little sweetheart is done! She was mailed off to her lucky recipient earlier this week. I just love the variations the yarn gave me in this particular scarf.
The book is a re-read: The Dry, by Jane Harper. I don't really like mysteries, but this was a good mystery, and it's becoming a series, with book two coming out on February 6. So as much as I say I don't read mysteries, between this and the Sherlock-Russell series....I guess I do?
And on the shawl....I am finished with section one! That's right! Yay!
The next section involves ridges of alternating colors, using the same stitch pattern as in the first part. So it's not new stitches, but new colors. I finally get to add in fjord, my third color! Yay!
I've also cast on a new scarf for BCC, in the weathervane colorway. It's not far enough to have a pretty photo of yet, though! It is pretty, however, just...short.
And a few notes:
The Take Up and Read Lent book, Above All, is available on Amazon! Here's my post about it, and there's a link to buy on the sidebar, too! Go get it! (It's also available on Amazon Canada, Amazon UK, and other countries!)
Catholic 101 is now available! Blog subscribers get a 15% off discount code! Buy your copy here.
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! )
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.
Photo by Allison McGinley: @alisonbenotafraid on Instagram (all photos in this post are by Allison!)
I am so, so happy to present to you the completed Lent book by all of us at Take Up and Read! Above All is our newest edition to our library (you can see all our other books here), and I am SO proud of her!
Let me tell you a little more about her.
First of all, this is a big book. It is 338 pages of goodness that starts on Ash Wednesday and takes you all the way to Easter.
A bible verse (as well as additional verses for further contemplation);
An essay by one of our wonderful writers;
A lectio divina page, with Biblical background and research to help you understand the time period and background of the day's featured verse;
A journaling page, with questions to help you go deeper,
And a prayer page, with a unique prayer for every day!
There is lots of white space, too. This isn't jammed together. We want this to be a peaceful, useful book for you! There is beautiful art, as well, and calligraphy, all done by our gifted artists.
And every week, we focus on Scripture memorization. That's long been a pillar of Take Up and Read. For this book, we're focusing on a beautiful passage from the third chapter of Colossians.
This book was designed very intentionally. We want you to have the tools to listen well to God, to go deeper into His word, and to be transformed by what you find there. You don't have to fill in every box, and you don't have to use every tool we give you. This is your book. Use it as you see fit!
I hope that you will join us on this beautiful Lenten journey, to put truly the love of God Above All.
If you used Elizabeth's Put on Love study last Lent, you will find much that is familiar here. But even then, there are new essays by our wonderful writers, new art, and new tools for you.
And the final, and really, most wonderful, bit about this?
I very much hope that you will join us! You can purchase your book here. There will also be a button on the sidebar, so you can always come here to purchase!
If you have any questions, please let me know!
It's going to be 50 degrees today! As opposed to last week, when I was dwelling in Hoth! Oh, Ohio weather....(Next week? Looks like it's back to Hoth...)
Anyway, time for a yarn along!
Still working on the shawl. It's coming. I actually had to frog quite a bit of it last week but I managed to save it, and now I'm sort of frogging-shy. :) Does that make sense? (Frogging is where you rip out stuff you knitted.) But I'm planning on diving back in today.
In the mean time, I've been working on this scarf, for an ebook customer who won this scarf as part of my release week** events! Isn't it pretty?
This week I finished Pachinko, which was one of my Christmas books. The book revolves around four generations of a Korean family that moves to Japan--the book starts in the 1930s and goes until 1990 or thereabouts. I enjoyed it--mostly--but if you're not familiar with Korean culture, you might need to Google a lot of references, especially early on.
**Speaking of the book (my book, that is!): If you haven't ordered it, you can do it right here. It's $9.50, but if you're a site subscriber, you have a code for 15% off! You can read all about the book here, but a few notes: isn't not something you have to read straight through. You can jump around to the sections you want to read. It has several new pieces that I didn't feature in the original blog series, and it's illustrated! (Not lavishly. But there are pictures.) I'll be writing another post that goes into more detail soon.
(Note: There is WAYYY more than 80 pages of content. It's almost 200 pages! So I need to correct that!)
I used to write a daybook entry every Monday, sort of like a diary, a look into my life on that particular day. I've gotten out of the habit, but every now and then I think it's a nice way to start the week. So a few things from around here, books, and some inspiration for your Monday?
That image up top:: Ann always has great things to share with us. I find that at the beginning of the year, when we have so many expectations about how this year is going to be (X, Y, Z), we can get overwhelmed really fast. You miss a day of working out once....or you have the cookie....or whatever your resolution was, you break it.
That's OK. Just pick yourself up and move forward.
Speaking of great images, this might be my new favorite Marian image--"Madonna of the Rose Bower", by Stefan Locher
You can read about the painting here.
(I love that Mary's a redhead!)
One of the great productivity things I found last week:: Pomodoros. Have you heard about this? The link gives you more information, but essentially, you perform a task for 25 minutes, then take a 5 minute break. You do this four times in a row--after the fourth pomodoro, you take a 25-30 minute break. Then you're back at it. I've found this amazingly helpful in both organizing my days and in getting things accomplished. And it gives you free time!
I don't use the actual timer--I use a plain old kitchen timer, or the timer on my watch.
The other great thing is that, if you're getting calls or email, you know that you'll get to them during your "break" period.
Reading::
I re-read a lot. I know some people don't. But I do. So this week has been a lot of re-reading of the Lord John series, by Diana Gabaldon. If you're familiar with the main Outlander series, you know about Lord John already, but Diana has given him his own spin-off series of novels and novellas. So I've re-read Lord John and the Brotherhood of the Blade, and now I'm on Scottish Prisoner. As far as new books, I'm reading Pachinko, which is really good so far.
On the calendar this week::
ENT appointment tomorrow, which is good because my Bionic Ear has been bothering me. And it's not the external part, it's the internal part--i.e., that part in my skull--that's been bugging me the most. It's been really painful lately, and I'm not sure why, so I'm definitely going to ask my Awesome ENT about this tomorrow.
So, that's a little, brief daybook for you. How was your weekend?
I don't live in Ohio anymore. I live on the planet Hoth. :-P As I write this, it is -1 for the real, actual temperature. It feels like -16. Yeah. No thank you.
(And yes, this is an old graphic, but I thought it was worth sharing because it amuses me.)
So I am knitting to keep warm! And then reading, under mounds of blankets, also to keep warm. A good set of conditions for a Yarn Along.
First up: some completed/almost completed scarves from Barton Cottage Crafts:
"Marianne" scarf
"Brianna" scarf
My big personal project is the drachenfels shawl. I am really liking working this pattern. It's not hard, once you get used to it, because the pattern doesn't appreciably change over the extent of the shawl.
Above, you can see how far I've gotten. Ignore the wobbly end bits that need woven in and tightened up! For the first part of the shawl, you do many repeats with color one (Iceland) and do a few rows of color two (bird's egg). I'm almost done with this first section. Then we get into using all three colors! Exciting. I won't exactly be sad to see the Iceland go.
The book is one of many I'm currently reading. One of my goals for the year is to have a simplified, comfortable, cozy house, and Emily Ley's A Simplified Life is helping me do that. All the sticky notes are pages that have lists or ideas I want to accomplish/incorporate. I did a huge closet clean out last year and book purge, so that's really helpful, but if there's anything else I want to get rid of, this is the time!
What are you knitting/ reading?
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Site notes: Catholic 101 is now available, and it's also listed on Goodreads! So you can leave a review if you've read it! If you haven't read it, you can pick up your copy here. Blog subscribers get 15% off!