Tuesday, September 8, 2020

Pandemic Procedures and Prescriptions

 Oh Emma. 

After restarting medication back in April, Emma got some relief from the arthritis symptoms in her jaw, but not for long. Morning stiffness and a weird squishy sensation started happening in her right jaw joint, so she ended up getting an MRI in August. She was an absolute rockstar during that MRI - she endured an IV catheter like a champ and held still for at least an hour inside that noisy tube while it took pictures of her head. The MRI confirmed the good news that she DOES indeed have a brain AND the bad news that she does indeed have active arthritis, despite weekly Enbrel injections. 

So, we increased the dose of her medication by increasing the frequency of her injections! Try telling a ten year old that she gets to be poked in the arm every five days instead of every seven! It's so much fun!!!

Really though, Emma is a good sport. She is starting to participate more and more in her medical decisions. She wipes her arm clean and mixes her medication for me before every injection. I haven't been able to convince her to give herself a shot, but we'll get there with time. 

She has been on the higher dose of meds for a couple weeks now. It's hard to tell if she is sensing any improvement. She *thinks* the squishy noise and stiffness are happening less often, but she also thinks that maybe she has acclimated to those symptoms so she isn't really noticing them as often. When the arthritis is in her knee it's REALLY easy for me to assess swelling, heat, and stiffness with my own eyes and hands, but her temporomandibular joint? Not so easy. 

She'll get some lab work done in a couple of weeks to see how her body is handling the higher dose of Enbrel, to look for inflammatory markers, and to make sure she hasn't developed antibodies to her medication. Fingers crossed that those results come back favorably. I don't really want to have to switch her meds. 

Juvenile Arthritis is dumb. 

Also, my kid looks really cute in a hospital gown. 

Tuesday, August 4, 2020

Pandemic: Poor Personality


That about sums up my general disposition for the past two months. Although life was monotonous from March to June, we had the hectic fun of online schooling! We had a schedule! We had daily tasks to accomplish and a reason to get out of bed! Since the first week of June, when school ended for the summer, Pandemic life went downhill for me and I haven't really been able to pull myself out of this slump. 

I have been taking our Shelter In Place extremely seriously since the beginning. The first few months were pretty okay. The extra time at home gave me more time with the kids, lots of opportunities to be involved in their educations, more time to plan and cook yummy meals for dinner. The past two months have been different because I feel so terribly drained. The kids play A LOT of Minecraft, they watch a lot of YouTube videos of other people playing Minecraft (something I NEVER allowed prior to Pandemic Life), and they generally spend way more time on screens than normal. Emma is still reading a ton and Liam will get sucked into LEGO building and playing, but we are all sitting around a ton more than we were even a few months ago. As the Mom and enforcer of rules, I know a large part of the blame for our sedentary lifestyle goes to me. 

There are many ways we could enrich our days while at home. We could do crafts, science experiments, baking projects, and all kinds of hands-on activities. However, as the adult at home, it falls to me to motivate myself and the kids, set up, teach, lead, guide, and enforce clean up for all of those projects. I don't have the mental or emotional capacity for that right now. For the past week I haven't even have the attention span to read a book, and that is a very sad thing. Despite being a complete zombie myself, I usually try to plan an outing in nature once a week. Those adventures involve getting people moving first thing in the morning, which is a fight. Then, once out among the birds, fresh air, and trees, the older child complains of boredom and just wants to go home. Really? Really Child?!!? THIS is boring? I give up! One good routine that has stuck with us since the beginning is to take a neighborhood walk every day. We even got Pokemon Go for the first time ever to make our walks less monotonous! This morning the kids and I committed to jogging around our block instead of just walking, so we'll see how that goes. 

There are some good changes in the past two months. Our county has relaxed some restrictions despite rising numbers of COVID-19 cases. We now have a friend "Social Bubble" and a standing weekly outdoor playdate that gives the kids a chance to play with two other kids and me a chance to chat with one of my best friends face to face, or should I say, mask to mask. The easing of restrictions has also allowed for outdoor sports, so Liam gets to attend a very small outdoor martial arts class once a week at a park. I am extremely grateful that our library is providing curbside pick up now, because the public library is one of the greatest loves of my life. Even as my town has eased restrictions on things like outdoor dining and non-essential stores reopening, I haven't participated in those activities. I still order ahead for pick up and take out when it comes to supporting local shops and restaurants. 

I don't really know the point of this entry other than to document the way things are right now. As of today, Alameda County reports a total of 11,909 and my city is up to 519 cumulative COVID-19 cases. Life is strange and full of drudgery and I am emotionally and physically tired all the time. 

I am actually looking forward to online distance schooling starting in exactly three weeks because it will bring us some much needed structure. Ugh. 

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!!!