Ani Made a YouTube Channel

A couple weeks ago I suggested Ani start a YouTube channel to talk about and support people (particular teens) with chronic illnesses. She made her first video where you get to see her for a few seconds without make-up and see just how bad she usually looks.

Warning: My daughter is really perky. If she’s this upbeat sick, she’ll be scary healthy, if she ever does get healthy. She was on the good drugs when she recorded this, the ones she got at the hospital that she’s been taking extremely sparingly when the pain is at its worst, so that may explain her perkiness.

She’s got lots of great ideas for her channel, Invisible Recovery, including interviews and talking about what it’s like dealing with all this. She plans to post one video a week. Honestly, just planning this and thinking about helping other sick teens not feel so weird and alone has given her such a big boost. And, apparently, I will be one of the interviewees one of these weeks (I made her wrong, you know).

As for how she’s doing right now… Not great. She hit her deductible for the year on February 4th so that’s pretty awesome. 10% for the rest of the year! She’s in a lot of pain and while the doctors at the hospital said she’s a zebra, no one seems to want to figure out just what type of zebra she is. They are reasonably sure she’s not dying or at least not from something they can figure out. Our insurance company is playing doctor right now and so she can’t have the pain medication her doctor wants her to have until she tries two others. At least the one she’s on right now is working better than Aleve. Her next appointment is in 2 1/2 weeks with the rheumatologist and then a few days later with a neurosurgeon.

She’s found two things that make life a bit better for her. One is drinking pickle juice. She told me she wanted the pickle jar and a straw. I thought she was joking. She wasn’t. She drank all the juice in one sitting. It really helps the POTS because of the salt. It makes her drink more water and also helps her body hang on to that water increasing her fluid volume. That helps her heart rate stay stable when she changes position and so decreases the unpleasant POTS symptoms. We should just buy her the pickle juice. In quart bottles, preferably.

For years Ani’s been complaining that her neck feels too weak to support her head. It’s gotten progressively worse. That’s where a lot of her pain is coming from. So we’re wondering if she has some craniocervical instability going on. We had a neck pillow for use on airplanes so Ani decided to try it as a makeshift neck brace and it helps so much. It reduces the pressure she feels at the top of her spine and helps a lot with the neck pain. It looks pretty silly, but it works, so we’re going with it.

It’s wonderful to see her excited about something again. Really, the only thing that truly has been giving her joy lately has been her job. Invisible Recovery has given her something to think about and plan. I think it’ll be just as good for her as it will be for other people.

I had this idea…

So I was thinking about next year (February/March/April is when I do my planning for the following school year) and I got this idea to see how many free educational resources I can find to use. It’s getting easier and easier to find stuff on-line with things like Easy Peasy, Khan Academy, and Crash Course. I think it’ll be a fun challenge!

Looks Can Be Deceiving


The other day I was cleaning and told Alexa (our Amazon Echo) to play songs by Sabrina Carpenter. A couple minutes later the volume went up. Ani’s been staying in the room that will be my parents’ when they move here so she can be near the rest of us but still stay in bed most of the time and not have to go up and down the stairs while she is still unsteady. Clearly, she approved of my choice in cleaning music. A few months ago Ani and I went to see Sabrina in concert. It was amazing. She is an amazing singer and performer.

And I learned something I never expected to learn at a 17-year-old’s show.

When we got there, just ahead of us in line was a man, probably in his early 20s. He had long dreadlocks, was generally scruffy, and wasn’t dressed nearly as nice as everyone else in line. He definitely didn’t look like someone you’d expect to see at a Disney star’s concert. Not who you’d expect to enjoy upbeat pop music.

And it was obvious the security people agreed with my split-second assessment. As everyone eyed him, judging him and whether he belonged there, the security spent two or three full minutes thoroughly wanding him. Everyone else got a cursory pass front and back and a quick peak in bags and purses and were sent on our way. Nothing alarmed when they wanded the guy so he was sent on into the venue.


We found seats and I discovered I was right next to the scruffy guy. I wondered what in the world he was doing at a Sabrina Carpenter concert. Surely he wasn’t a fan. Her fans don’t “look” like him, do they?

And then the concert started.

I think that man may have been the biggest Sabrina fan in the room. He sang along every word and danced to every song. He openly cried several times. I talked to him a little bit. He hadn’t heard she was coming to San Antonio until it was too late (the tickets sold out in just a few minutes), but then the venue released a few tickets that had been held for season pass holders in the middle of the night before the concert. He stayed up half the night in order to snag one of those tickets. He was so happy to be there and it showed. He’s had some tough times and Sabrina’s music has helped him get through it.

I couldn’t help but wonder if the judgment from all of us in line and the security people contributed to his “tough times.”

Thursday Jamie and I went to Chipotle to get lunch while Ani was sleeping in her hospital room. We ate outside since it was a nice day. A man came up to us and apologized profusely for bothering us, but wondered if we had any change we could spare so he could get something to eat. He didn’t look like a typical homeless person. He was dressed relatively okay. Immediately I wondered if he was scamming us.

But then I remembered that young man at the concert. Just because this man didn’t look like what I think of as a homeless or hungry person, it doesn’t mean he isn’t. I gave him a couple dollars. I can spare it and if he is hungry at least I didn’t turn him away and if he was lying, well, that’s on him.

Yesterday we had family home evening (we do it Sunday because Monday night half the family isn’t home). We did some things for the little boys’ Cub Scouts electives. We talked about hidden disabilities. Their own sister has one. She’s sick, but she can push herself and put on make-up so she looks okay to everyone else. Their older brother has one, too. As long as he doesn’t have to read something out loud, you’d never know just meeting Cameron that he has dyslexia.

You never know just looking at someone what is going on underneath. We all are constantly judging people and that’s okay. That judgment could save our lives. But when we are clearly in a safe place and we still judge that this person doesn’t belong at a 17-year-old performer’s concert or that person doesn’t look homeless and is just scamming asking for money for food or this other person looks healthy and so couldn’t possibly be spending 3/4 of her life in bed, then it’s a problem. That’s when we lose compassion. And now more than ever in this world what we really need is compassion.

I’m really thankful I got to get the whole story of that guy at the Sabrina Carpenter concert. I’m glad it didn’t just end with seeing him head into the venue wondering what in the world he was even doing there. I’m grateful for what he taught me.

It’s been a long week


Ani’s been having a whole lot of pain. The doctor keeps asking us what the major problem is and we’ve figured it out. Pain. Pain prevents her from sleeping. Pain makes her tired. Pain makes her miserable. So much pain. She complained about feeling like her neck isn’t strong enough to hold up her head for quite some time now. Now her neck hurts horribly. She has headaches and has complained about it being particularly bad just above her left eyebrow. Her spine hurts all the time and sometimes that pain radiates out toward her left side. She went to an Airrosti doctor last summer and that helped her back pain quite a bit, but it’s even worse now. A teenage girl shouldn’t have so much pain. She’s also having random times where her extremities and face get tingly and numb. Her tongue really seems to like to go numb.

Last Friday she had an MRI of her brain. It shows low-lying cerebellar tonsils (and she has pretty much every symptom) so now Chiari malformation is on our list of possibilities. Next Friday she is having an upright MRI with flexion and extension. That’ll tell us if that’s the problem or not.

Saturday she was in severe pain and had barely slept in four days so we took her to the ER. They gave her pain meds and anti-nausea meds and for the first time in weeks, she was pretty much pain free when we left the ER and got a wonderful night of sleep. I noticed soon after they gave her the medicine she was moving her neck all around. I hadn’t realized how little she has been moving her neck.

Monday she saw an allergist (she’s allergic to cats and is so mad at her father for passing that along to her). He did a CT scan of her sinuses and she had a very nasty sinus infection. So nasty she’s on strong antibiotics twice a day for two weeks and we’ve been told it might not be clear by the end of those. So nasty what when her primary care doctor got the report he called to be doubly sure she takes all her antibiotics. She had no symptoms from it, though we are wondering if that’s what was causing her recurring low grade fever last fall. Guess where the sinus infection is. Right above her left eyebrow. Right where she’s been complaining of a headache for months.

Tuesday she saw her regular doctor and he put her on pain medicine. Of course we haven’t been able to actually get that medication because our insurance company says she doesn’t need it. I love it when insurance companies play doctor.

Wednesday she was dizzier than normal and got worse throughout the day. Eventually she was so bad she was stumbling and fell a couple times. That was weird, and new, so we took her back to the ER. They were concerned enough that they admitted her. We ended up sitting in the ER all night waiting for a bed to open up for her. (And because of that I was awake for 40 hours straight.) They released her last night.

They don’t know what the main cause of her issues is, but they did discover she has POTS (postural orthostatic tachycardia syndrome). Her heartrate relaxed laying down was 55-65 beats per minute. When she’d sit up, it would jump to 130s-140s. More than double. Her blood pressure doesn’t really change (sometimes goes up) when she stands. We had wondered if that was one of her issues. Now we know. When they discharged her they told her it must be because she was dehydrated, but both Saturday and Wednesday in the ER they gave her a bag of fluid and both times said she wasn’t actually dehydrated before giving it but it was something they could do. They told her to try to drink 1 1/2 liters of water a day (she usually drinks more than that anyway). So not too helpful on how to treat it, but good we now know what one of her issues is.

Meanwhile, yesterday while Jamie and Ani were at the hospital I had to run home and take Fritz to the allergist (huge surprise: mild peanut allergy). Then this morning Lola had a check-up at the vet. We already have three medical things scheduled for next week (and need to schedule a blood draw for Fritz to check to see exactly how bad his peanut allergy is and to check for a few other things as well).

It’s been a long week, but we might be closer to a diagnosis for Ani. Her sinuses are hurting now and she’s got nasty postnasal drip and she’s been running a fever. These are actually all good signs that the antibiotics are working and her sinus infection is breaking up. Her pain and dizziness are getting a little better (headed back to just bad rather than extreme) so I really think the sinus infection was really complicating things.

Thinking About Next Year

Late February/early March is the time of year when I decide what we’re going to use next year and do my lesson planning. It’s almost February so I’ve been thinking about how things might need to be changed up. Most things will stay the same, but a few things will need to change.

Obviously, the biggest thing is more books for Fritz. Eleven lasted him three months, so he may need as many as 25 next year. Crazy.

All three boys will do Fix-It Grammar together. I may have the little two diagram the sentences to keep their practice up. Because of that, I will probably no longer use Vocabulary From the Classical Roots and will probably adjust Writing With Ease for Adrian so he only does the narration days (since Fix-It includes daily copywork).

History will be separated instead of all three together (but science will almost definitely stay combined). Adrian will do Story of the World plus the activity book. Fritz will continue with Pandia Press level 2. I am pretty sure I’m going to have Cameron use the open source Crash Course World History.

I’ve decided I want to cut down on the paper and toner we use dramatically. I haven’t decided exactly how we’ll do that. Possibly through the use of tablets or computers. I also want to figure out a way to make their portfolios digital, but viewable in a fun way.

Mostly, the boys will just be moving on to the next level of the same things they are using now (and Ani will have graduated from high school) so that makes most planning easy. It’s just solidifying these changes that takes a while.

Silent Letters That Aren’t

In spelling, the boys have to mark silent letters sometimes. The problem is, we actually pronounce some of those silent letters! I asked about a couple of the words on Facebook and it was split about 50/50 among my friends as to whether the letter was silent or not to them. Clearly, where Spelling-You-See is made, they are silent.

Words like could and would, the l is silent for us (as they are in the answer keys). Same with e’s at the end of words like have or place or one. But with words like talk and palm, we definitely say the l. Those are definitely not silent letters (and, so, I’ve changed my answer keys).

January Science Experiments

We looked at blood under the microscope. None of the boys were willing to prick their own finger so I ended up doing it.

We listened to each other’s heartbeats using the stethoscope. Little did I know when I bought that stethoscope in 1997 for nursing school that it would still be getting used 20 years later!

We used balloons to measure our lung capacity. We took really big breaths
and then breathed all the air out into the balloons. Not surprise that Cameron has the biggest lung capacity, followed by me, then Fritz, and Adrian has the smallest.

We moved our joints in all the different ways joints move.

We dissected a chicken wing, paying attention to the skin, fat, muscles, and bones and how they connect to each other.

We demonstrated how quickly bacteria multiply. We started with a sheet of
paper representing the parent bacterium. We ripped it in half showing that one
becomes two in 15 minutes. We ripped those in half making four in 30 minutes.
Then we ripped those in half making eight in 45 minutes and so on until after 150 minutes we would’ve had 1,024 bits of bacteria confetti. We graphed the exponential growth.

We sat still and contemplated the organ systems that were working inside our bodies.

We examined insect wings and looked at them under the microscope. (This is a cockroach wing. It’s strangely pretty.)

We made a to scale timeline of the geological time of the earth. It stretched all the way across the entire house. The beginning of time is at the door. The little circle at the bottom is the appearance of humans.