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!