Wednesday, April 8, 2020

Pandemic & Polyarticular Juvenile Arthritis

Well, it's been a good run.

It has been a solid 18.5 weeks since Emma's last injection of immune suppressing medication to keep her body from attacking her joints. Alas, this round of unmedicated remission is over. It's not our longest stretch off meds, but it's the second longest!

Unfortunately, her jaw started showing signs of arthritis again, as it did back in the Fall of 2017. It started as an occasional discomfort, but for the past few weeks she has been complaining of pain almost every morning while chewing her breakfast. At the end of March, her pain lasted all day, and in the evening she told me that her jaw felt stiff, like she wasn't able to open her mouth as wide as usual. I busted out a ruler, and sure enough, she has lost an entire centimeter of "maximum interincisal opening" since her last doctor's visit two months ago. Well, crap.



Prior to the Covid-19 pandemic, the plan was to repeat an MRI if she started experiencing arthritis symptoms in her jaw, but I'm not keen on the idea of taking her into a hospital for imaging right now. Her pediatric rheumatologist agreed with me because she is a sensible lady. We also usually have Emma’s blood drawn for labs at the start of a flare, but we aren’t doing that right now either. We'll continue with our shelter in place, thank you very much.

Emma opted to try starting with NSAIDs, so she began taking ibuprofen twice daily eight days ago. It has done a great job eliminating her pain, but did nothing for the stiffness or range of motion in her jaw. As a result, Emma, her doctor, and I made the decision to restart Enbrel today. Okay, actually *I* made the decision to restart as soon as possible. Em would prefer to wait until the weekend because she is a creature of habit and is accustomed to Sundays being our shot day... Even though every day is like a weekend right now, so I’m not sure why it matters.

***  If you are lost, here’s a quick summary: Emma has an autoimmune disease called Polyarticular (multiple joints affected) Juvenile (happens to kids) Idiopathic (no one knows what causes it) Arthritis (inflammation of joints) and has had it since she was a toddler. In her case, it is well managed with an injectable medication called Enbrel (etanercept). We get to wean her off of that medication each time her arthritis goes into remission. This is the end of her fourth remission and the beginning of her fifth round of treatment. You can read more about JIA at the ARTHRITIS FOUNDATION’S WEBSITE. You might also read through our timeline on this journey to the right of this entry (on the web version) . →→→→→  ***

I will confess, I’m not super excited about restarting my child on her immune suppressing medication in the middle of a global pandemic, but I don’t want to risk permanent damage to her jaw joints. So, here we go. First injection of Round #5 was giving today.

Fingers crossed her wonder drug works fast and well, and that we all stay healthy!!!!

Cookies make injections better. 


***
If you are financially able, I would love if you could donate to Emma’s fundraiser for this year’s Virtual Walk to Cure Arthritis. It is put on by the Arthritis Foundation, a non-profit that has many programs for adults and kids to learn more about their arthritis and meet people with similar diseases. My connections with other families of kids with autoimmune arthritis have been invaluable to me, and the friendships Emma has made with other JA kids are very meaningful.

In addition to bringing people together, the Arthritis Foundation fights for patient rights and goes to bat for patients politically. That feels really important to me right now, when the leader of our nation is talking up a medication, hydroxychloroquine (also known as Plaquenil), as a potential treatment for Covid-19 despite the lack of scientific data to back such claims. You know what hydroxychloroquine has been medically proven to be useful for treating (in addition to Malaria)??? The symptoms of Rheumatoid Arthritis and Lupus! Some people who rely on this medication to manage their autoimmune diseases are unable to fill their prescriptions because of the current situation, companies's tendencies to hoard and drive up prices, and the advice of non-medical professionals. That is not okay and makes me cranky inside.

You can donate to support Emma’s efforts on her Walk to Cure Arthritis page, or you can donate to the exact same fundraiser through Emma’s Facebook Walk To Arthritis Cure Donation page (which is super easy if you’ve ever participated in a Facebook fundraiser before.) Any amount helps and we appreciate your support. PLEASE FEEL FREE TO SHARE THESE LINKS! If you would like to register for our team for the virtual walk, let me know! I'll send you the link to that!

Keep washing those hands, my friends. Please, stay at home. Also, stay away from me for Emma’s sake!!!

Tuesday, April 7, 2020

Pandemic Pantry Filling and Parenthetical Statements

The Bay Area Shelter in Place began three weeks ago.

According to Johns Hopkins website today (4/7/20) there are 1,429,437 confirmed cases of Covid-19 world wide. 398,786 of those are in the united states. 17,568 of those are in California. Alameda County's website is reporting 602 cases and 15 deaths.

I went shopping again. It has been nearly 2 weeks since my last shopping trip and my refrigerator was looking very empty and sad. I went to my local Lucky grocery and filled my cart to the max! I also got several items for my parents, because, you know... they are *cough* elderly *cough* and shouldn't be going out to the stores if it can be helped.

This was my first outing wearing a mask. I have a few N95 masks because we got some a year and a half ago. The fires in California were polluting our area with smoke to the point that we were told not to go outside without masks and school was cancelled (for one single day). Anyway, I held on to my extra masks, thinking I would need them annually when the fires get bad. I'm glad I have them. If it's not one emergency, it's another, I guess.

Many people at the store wore face coverings, many did not. I didn't wear gloves, but was hyper vigilant about what I touched and which pockets I was allowed to put my dirty hands into for credit cards, keys, etc. Then I used lots of hand sanitizer when I got to the car and did lots of sanitizing again once I was home. Anyhow, I have been very happy with how well Lucky is keeping supplies in stock. I got almost everything on my giant list. The exceptions were eggs (I don't really need them, but figured I'd pick some up while I was out. However, I didn't want to take one of the last few packages, so I didn’t get any.) and SPAM (for Barry!!!) because they didn't have any. I keep forgetting to look for acetaminophen. I should probably buy some to have on hand, since mine is expired, but oh well. Maybe I'll remember in two weeks.

It's Spring Break right now, which means I'm not forcing my kids to do academics, so they are spending way too much time playing video games, or watching movies and shows. Emma also keeps busy practicing for her angsty teenage years by listening to music with earbuds in while reading, texting and video-calling her friends, and composing poetry. She also plays Dungeons and Dragons with friends over video calls, and today played Prodigy online with friends while on a group phone call. Technology is awesome. Liam loves playing computer games, our Classic Nintendo, or re-watching the entire LEGO Ninjago series. He keeps himself entertained outside for longer than Emma, but came in today complaining that the sun was too hot. It was like 65º F today - what is he going to tell me in a month when it's 85º F out there? He also attends weekly Zoom Martial Arts classes, so that's cool. I make the kids and the dog go on a short walk with me around the neighborhood every day.

Next week, distance learning will resume. School is out of session through the end of the school year, but our district has a plan to provide students with curriculum and a "credit" or "no credit" grade for this final trimester. Since we only have our one laptop, I put in a request to borrow a school ChromeBook. I'll pick one up next week and my kids won't have to share a single computer for all of their schooling, so maybe we'll be more productive? Who knows.

I have cut back my work to two full days a week so that I can be home with the kids more for all of this schooling madness. Last week my husband was laid off from his construction job and we don’t how long it will be before he is back to work. I’m kind of happy that they closed down many construction sites. I’m taking this shelter in place very seriously and want to keep my family safe. Also, I want to keep you people safe from my family’s nasty germs.

On that note, I’d like to say that I am proud to live in California! Our state began social distancing  and sheltering in place before other states, and as a result the virus isn’t spreading as quickly as in other areas. Yay, CA!

Please hunker down my friends! Stay at home, wash your hands, and be kind!

Saturday, March 28, 2020

Pandemic Positivity

No, I'm not talking about positive test results. We'd have to actually be testing the public to have any of those! What I'm talking about are positive moments and looking on the bright side amidst this pandemic, social distancing, and sheltering in place.

Of course I'm worried about people's lives and health. I'm worried about the economy. I'm worried about going stir-crazy. At the same time, these new circumstances are revealing a lot of good in the world. Have you noticed the different ways that people are connecting through social media? The general kindness that people are showing to others? I have.

These are some of my favorite bright spots during Covid-19 social distancing and isolation:

  • Live Music! SO many artists and musicians are performing live on social media. I've attended several very intimate living room concerts with some amazing artists in the past week via live or recorded videos on Facebook or Instagram and I LOVE IT. Music is a balm to my soul.
  • Literature! Actors and celebrities are recording themselves reading novels, Shakespearean sonnets, and poetry and posting those videos on social media. 
  • BOOKS! I'm having a hard time actually sitting down to read, still, I am overwhelmed by the amount of digital and audio books that have recently been made free on multiple platforms. Also, my library has a wide range of (always free) e-books and audiobooks. Also, the fact that my library is closed means I get to hold on to my actual library books waaaaay past their original due dates! 
  • Not getting dressed on days I don't go in to work! (I don't need to explain that one, do I?)
  • My calendar is suddenly very empty. I don't have to shuttle my children back and forth and back and forth. I don't have to rush and show up late, cram shopping trips between extracurricular activities, or squeeze in social gatherings. I don't spend time wondering, "Should I feed the pets dinner early, now? Or will I be home at a decent hour to feed them?"
  • Creativity!!!! I actually have time to write in this blog! Wow!
  • Flexible bedtime! Since I am sleeping like crap, it doesn't really matter if I go to bed early and lose hours to tossing and turning, or if I stay up until midnight finishing a book and then zonk out hard for five solid hours of actual sleep. The results are pretty much the same. As a result, I'm finding that my bedtime and resulting morning get-out-of-bed time are shifting later and later. 
That's all for now, maybe I'll add more later. Please comment with some of your favorite bright spots amidst this pandemic and shelter in place! 

Monday, March 23, 2020

Pandemic Pandemonium

To recap:
Ten days ago our city declared a local emergency and it was decided that our school district would cancel all schooling for a month, through the end of Spring Break. Seven days ago my county, along with several others in the San Francisco Bay Area, created a Shelter in Place order, asking people to stay home unless receiving or obtaining essential services. Four days ago the governor of California declared a similar Stay at Home order for the entire state.

Everything is happening very quickly.

I haven't been shopping in eleven days. When I did go last, I went to three different stores in one day to find all of the different supplies I wanted. It was stressful. People were freaking out leading up to the spread of this virus, and the grocery store parking lots were JAM PACKED the day before our local Shelter in Place went into affect. I get it, I do. At the same time, I've been avoiding all stores in hopes that the general pandemonium will subside and I can do semi-normal grocery shopping again, soon. I'm planning on waiting until at least the end of the week before I go into a store again. We are very privileged to have a house with lots of cabinet space for food storage, an extra freezer, and the income to afford buying in bulk and our electricity bills. I'm not going to run out of flour, sugar, powdered milk, or pasta soon, thanks to my years of obedience to the Mormon church's counsel regarding food storage in case of emergencies. I AM going to run out of fresh fruits and vegetables in a few days, and that simply will not be tolerated.

At the time of my last post, my daughter had a fever. It only lasted that evening, she has had a stuffy nose and a bit of a sore throat off and on since then. No cough. We're all doing fine at my house. Maybe we all have Covid-19 and don't know it, but, that could be true for anyone right now. That's why many states all over the nation are following in California's footsteps and asking their residents to stay at home!

I am still full of rage that testing for this virus is not widespread. The wealthy and affluent can magically be tested if they feel fatigued or a bit under the weather. Meanwhile, people are ill with coughs and fevers and told that tests are not available and they should stay at home unless they have labored breathing. We are sending countless healthcare workers to work every single day and expecting them to return home to their families without being tested, despite KNOWING that this virus is transmitted by asymptomatic carriers.

As a society, we are flying blind when it comes to just how many people have this virus and as a result we have self-entitled people waltzing around, ignoring the guidelines for social distancing. I suspect these people don't understand the science behind viral infections and the evidence is not in their faces enough for them to realize the impact of their actions. Sadly, that impact is hitting us harder and harder every day.

The positive number of cases in my county jumped to 112 today.

Stay safe, my friends. Call your friends and family, read a good book, and wash your hands!

Wednesday, March 18, 2020

Pandemic

I played a board game called Pandemic years ago. That was fun. This is different.

There's a new virus in town.

Novel Corona Virus is causing quite a stir.
Just as a disclaimer: I'm a science nerd. I'm one of the people you know who has actually taken virology classes. I don't exactly remember everything from those classes, but I have retained some of that information and I just want you to know that. Anyhow...

Today is Wednesday. Five days ago, while I was at work on the afternoon of Friday the 13th, my county and my city declared a state of emergency. We learned that our school district was cancelling all school for the next four weeks. I told my lovely boss that I would need a couple of days off work each week in order to be home with my kids during this time. Then, I spent the next few nights not sleeping well, worrying about how my small, local veterinary hospital would keep afloat with all of these changes and with less staff there to help out. I also had a lot of weird anxiety dreams that involved sanitizing doorknobs and washing dirty hands.

Monday rolled around, I went to work as planned and left the kiddos with my incredible, elderly (they don't like me saying that word) parents. Midday more changes were announced. Millions of people in the Bay Area were told to Shelter in Place at their homes starting at midnight. If you need to go out to receive an essential service or provide an essential service, that's okay, as long as you keep six feet apart from everyone while in public. The rest of the time, everyone is expected to stay at home as much as possible. Fun news. It turns out the veterinary medicine is considered an essential service, so I went to work Tuesday. The hubby is working on an apartment building and construction of housing is considered an essential service, so he went to work too. My poor kids got to spend another day with my amazing (sort of elderly) parents.

Today I got to stay home, since my boss lady is understanding. I spent the entire day reading spreadsheets full of assignments and suggested applications that my kids' wonderful teachers emailed to me. I bookmarked a million websites, printed tons of spreadsheets with detailed assignments, logged in to accounts, couldn't log in to accounts, emailed teachers, finally logged in to accounts, and bookmarked those websites too. I also spent absurd amounts of time reading with my son, doing math with my son, checking in on my daughter to make sure she was reading and doing math. We watched shows in Spanish and got exercise and danced and ate healthy meals. And STILL my son didn't do enough writing because getting him to write is like pulling teeth. I even went to the school to pick up a packet (of stuff that is all online so I'm not sure why I had to pick it up!).

It all made me feel tired.

You know who else was tired, and then complained of a dry, sore throat and checked her temperature without me prompting? My 10-year old child. As the afternoon grew later, I could see that look she gets around her eyes that pretty much screams at me, "I don't feel well! I have a fever!" and sure enough, she had a fever. She isn't coughing, but her elevated temperature means that nobody wants her, or anyone who has been near her, anywhere near them. So now I can't go to work tomorrow or leave my house everrrrr agaaaiiiinnnn!!!! (That last bit might be an exaggeration.)

We wash our hands a lot, we have been sanitizing doorknobs, light switches, faucet handles, etc. for a week now. We are taking this social distancing and sheltering in place seriously. The kid probably has a run-of-the-mill cold and not a fancy new viral infection, but we can't know that, so we shall wait, watch, and see.

I called our healthcare's advice nurse line and spoke to a kind, compassionate nurse who explained to me that our county controls the parameters around testing and they are only testing people who:
1. Have symptoms of Covid-19 and have had known contact with someone who is confirmed positive for Covid-19.
2. Are really sick and in the hospital and they can't figure out why, but all of the symptoms point to Covid-19.
3. Are maybe not in the hospital but are sick with symptoms of Covid-19 AND are considered high-risk.

I'm frustrated by my country's medical system and response to this pandemic. If the powers that be are only testing really sick people despite knowing that community spread is happening and that most cases are mild, that is really skewing the numbers and giving us shit data. (I couldn't spell "skewing" and wrote it 700 ways before asking Google for help.) I don't know if we've been in contact with someone who is positive because people are not being widely tested. Also, at least two clients spat on me while talking to me on Friday. That's gross and I just wanted to make sure I included it in this post, because yuck.

I'm annoyed, a little worried, and kind of anxious.

Stay safe, my friends. Cover your mouths and wash your filthy hands.

Tuesday, January 7, 2020

Lost and Found, But Mostly Lost

I'm worried if I don't write about today I will forget about the little crazinesses that are part of parenting my children and living my life.

Let's start my day off with this morning... very early this morning. I was awoken at 2:30am by my oldest child because she had a bad dream. I let her into my bed, squishing my arm and keeping me awake for a little while longer than I would have liked, before convincing her that she would actually sleep better in her own bed.

Several hours later, the normal morning routine was easy and uneventful until it was time to walk out of the house and I noticed how underdressed that same child was for the Winter weather. We had a verbal battle of what jacket to wear (more on that in a moment) for frosty morning walks to school, and even though it was "uncomfortable" I managed to convince the kid to bundle up. We made it to school just before the bell. I had a few minutes left before I had to get to work, so I decided to investigate the Lost and Found. 

Two and a half weeks ago the kids had their last day of school before Winter Break. Oldest child was wearing her cozy, comfortable jacket (which is the inner layer of the "uncomfortable" one mentioned above) and fuzzy pajamas for a nice day of reading, snacking, and anticipating two entire weeks of no school. She remembers removing her jacket and setting it on the back of her chair, because those pajama pants were hot! When school ended for the day, excitement rushed her out of the classroom and the cozy jacket was left behind. We didn't realize it for several hours, and by that time I told her not to worry. No one would be attending class, no one would take her jacket, and her name and my phone number are written inside, so we'll just get it when school starts again.

Well... Foot, meet mouth. 

Yesterday, their first day back after break, the kid looked and the jacket was nowhere to be found. Not in the classrooms, not in the Lost and Found. Gone. Vanished. Like magic. 

I decided to take matters into my own hands, because I'm Super Mom and the jacket was kind of expensive, AND it is the comfortable inner part of a two-in-one winter freaking coat, and it's the middle of Winter. As I mentioned earlier, I checked Lost and Found. It was pretty much empty. Freakishly empty for a K-8 school full of children who lose items regularly. So I walked to the office, because the office people are nice and know everything. 

Office Lady #1 was super kind. She told me that the custodians were working a few days a week over break and they may have grabbed the coat from the classroom, so she checked another spot in the office where lost items are dropped off. She found zero items. She then told me that the custodians DONATE THE "LOST & FOUND" ITEMS AT THE END OF EACH MONTH. I made a face like I smelled a fart and then asked if they really would have done that DURING Winter Break when kids had no chances to look for their lost items!!!!!!  THEN I shook it off, swallowed my bitterness, remembered it was only a coat, thanked the nice lady and left.

A little bit later I had a genius idea. I called the office and spoke to Nice Office Lady #2 to gather more information. She called me back to let me know that yes, the custodian took a big donation recently. She also confirmed the name of the charity where the items were donated. SCORE! I planned to go there later in the day to find the jacket, buy it back, and save my kid's day!

Work was pleasantly busy and delightfully not understaffed for the first time in nine hundred years. I worked my shift, I went home and did laundry and swept the kitchen. Then I picked up a bunch of kids, dropped off the extras at their house, took my older child to her new art class, deposited some checks at the bank, then went with my younger child on a Quest to the thrift store. 

The jacket wasn't there.

Nice Thrift Store Lady #1 asked Thrift Store Lady #2 if she could help me, but Lady #2 was like, " I don't know anything about where donations come from or what we have back here." as she is sorting through items and tagging them for sale. I decided to butt into their conversation and see if I could peer at their clothing piles or something sensible like that, but I was denied. Apparently the donation center has been slammed with items over the holidays (Good job, residents of my town!!! Way to donate and not throw away!!!) so they really couldn't do much for me. Nice Thrift Store Lady #3 asked for a description of the jacket and encouraged me to come by every few days, or call the store, to see if it turns up. I thanked her and left. 

I felt deflated and irritated. It's only a coat, I can replace it - though not exactly - but what about all of the kids who's families can't afford to get them a new coat every time their well-meaning but thoughtless school custodian donates perfectly good outerwear over a long school holiday!!!???!?!
*sigh*

When I got home again with just enough time for the younger child to unpack his school stuff and change into his martial arts clothes he realized that he didn't have his lunchbox. WE WENT BACK TO SCHOOL TO CHECK THE LOST AND FOUND. AGAIN. Because my entire life revolves around that little rack in the school's multipurpose room like it has the gravitational pull of a black hole, because IT IS ONE. I am officially changing its name to "Lost and Not Found" because we never find anything there. 

By some rare stroke of luck, the lunch room staff or another student actually must have looked at the lunchbox, read the name and classroom number written on it (written there because I AM RESPONSIBLE) and returned it to my kid's class. In addition to being responsible, I am also sensible, so we checked the classroom and were able to retrieve the lunchbox. Huzzah! 

Next, we rushed to karate. Kid got out of the car, I drove away to the grocery store because why not?! I'm clearly some kind of human ping-pong ball/taxi service. I got a few items for dinner from the store, picked up the daughter from art class, picked up the son from karate, then went home.

I am exhausted.
I guess I'll follow up with the thrift store later this week. I'll probably also buy my daughter a replacement jacket, because I am nice and I doubt we'll find the one she lost.

Moral of the story: If you work at a school, don't donate lost items during a freaking holiday. 
Also, MAYBE LOOK INSIDE JACKETS FOR NAMES next time. 
Also, (If you aren't the custodian of my freaking nightmares) If you need someone to follow through and get stuff done, I'm clearly your girl.