Covid...again.

So I got really sick over Labor Day weekend, while I was having a girls' weekend with my mom and sisters. I felt awful the entire time, but still did it. I didn't want to miss out!

Probably a mistake (that I don't regret), because I ended up missing all but one day of school last week. I felt horrible!! I went back to work this week, and I started feeling better. Well, this morning I woke up all congested, with a sore throat, and a fever. GOOD GRIEF. My fever spiked, so I ended up going to urgent care.

Turns out, I have covid. AGAIN. I've lost track of how many times I've had this stupid virus. I'm so sick of it! (no pun intended)

Ugh. My brother and his family are in town this weekend, bringing my niece to college (!), and I can't even go see them. 

SO. NOT. FAIR.

Plans

 I have plans. Plans that don't include stopping for my autoimmune diseases. Plans that will help me maximize the enjoyment I can get out of my life as it is.

First, I'm making time for hobbies and things I enjoy. Things like cross stitching, learning embroidery, reading, baking, etc.

I'm learning how to make sourdough bread. I had my first successful loaf last week. I'm taking this week off, because I've had a nasty stomach bug. But the satisfaction of baking my first loaf was unreal! The thrill of seeing my creation baking up beautifully. The glorious taste of homemade bread that *I* made.

I'm learning how to do embroidery. I already cross stitch extensively, so embroidery is just another level. I'm leaning new stitches that are just lovely. I have plans for this hobby. Plans that include homemade gifts that will be meaningful rather than things that I happened to find online.

My hands hurt a lot of the time because of my autoimmune diseases, but I'm trying to still pursue hobbies. It gives me purpose.

Second, I'm getting a cat. I've been searching for the perfect fit cat, but all the ones I've hoped to go meet have been adopted already. That just tells me that my perfect fit is still out there. I'm ready to travel to pick up my perfect pet. I have several new candidates that I'm hoping I can meet. This cat will really be a lifesaver for me. An emotional support animal. My anxiety has reached what feels like catastrophic levels and I've got to have help. I can't be with my therapist 24/7, and I adore cats. This feels like the perfect solution.

I tried an ESA once before, and it was a disaster. There were multiple reasons, I think. My cat was an old man who was used to having the free range of the garage and huge yard at my parents' house. He'd never been an inside cat, and it was a very tough adjustment for both of us. I'd never had an inside cat, and I wasn't ready for one to be independent and do what he wanted, where he wanted. I've been discussing this at length with my therapist, and he's helping me to feel ready and prepared. It will be a bit of time yet, but it's coming sooner than I'd though possible. I'm very excited.

The school year is coming to a close rapidly. I can't believe April is nearly over. It's gone by so fast. This has been a tough year. Adjusting to a younger grade level has been hard. I taught third grade when I first started teaching, but then I spent 9 years in 4th grade. There's a huge difference between third and fourth graders. I wasn't ready for the changes. Plus, this group has been tough. They're not poorly behaved at all. We've hit a pretty decent stride for the most part. Motivation has been hard and the tattling...OH, THE TATTLING. It drives me crazy to hear the 'he looked at my funny' whines that I get all day long. It's times like that when I have to stop and remind myself that they are 8-9 years old and this is developmentally normal. It's definitely been an adjustment. Next year will be better because I'll at least be prepared for the differences.

Now I'm just trying to stay healthy (hah. easier said than done) I'm trying to find the energy to get anything done at home on the weekends. (How did I ever work a five-day week?!) I'll be seeing my rheumatologist in May again, and hopefully we'll be able to come up with a better plan. My meds are no longer working and the pain is getting worse by the day. I'm trying, I really am. It's hard. Invisible illnesses are devastating. People seem to think that because they can't see anything wrong, there isn't. But oh, there's so much. Having your own body be at war with itself is incredibly tough and exhausting. I'm trying.

Autoimmune diseases are the devil

I had a doctor appointment this week. 

I came out of it feeling overwhelmed, but also grateful. Grateful to have a team of doctors who listen and who are doing their absolute best to help me get healthy.

I am dealing with Axial Spondyloarthritis and underlying Rheumatoid Arthritis. Yes, it's painful. Yes, it's exhausting. Yes, there are days when I simply cannot function. Yes, by the end of the week I am absolutely drained. Autoimmune diseases take a toll physically and emotionally. 

I asked a question that I was expecting to get a 'no' answer on. Instead, I got a resounding YES and a definite point on the timeline when my issues started. Over twenty years ago. TWENTY YEARS. I have been undiagnosed for over twenty years. I have been laughed out of doctor's offices. I have been treated like a hypochondriac. I have been accused of being an attention seeker. Twenty years ago, I was a student at BYU (that long already?!) and I got mono. 

Turns out, mono can trigger autoimmune disorders. Before mono, I was incredibly healthy. I rarely got sick, and if I did, it was over quickly. After mono, I got sick all the time. Like, ALL THE TIME. It was more severe every time and it felt like it lasted forever. I knew mono could stick around in your system and flare up from time to time, and I felt like I'd experienced that several times. Which, I could have. But it's more likely that I was getting flares of the AS/RA even that long ago. 

When my doctor said it was absolutely connected, I started crying. I couldn't help myself. I was mourning for the Emily who got laughed at. Mourning for the Emily who was accused of things that weren't true. Mourning for a life spent in pain. I can't even imagine what my life could have been like if someone had listened to me instead of laughing at me. If someone had said let's figure this out.

I'm angry. I'm angry at the doctors. I'm angry at people who doubted. I'm angry at people who rolled their eyes and sarcastically said they never had to take sick days. I'm angry that I've missed out on SO MUCH. I'm angry that it apparently isn't enough that I have been living in hell for over twenty years, but I also get to do it alone. I'm angry at people who say that they're grateful for their trials. I'm angry at people who tell me I just need to find what it is I'm supposed to learn from this. I'm angry at people who suggest that I'm just looking for the bad in my life. I'm angry that I had to get to the point where I very nearly took my own life because of this before anyone would help me. 

At this point, I feel like I've earned that. I need to go through the anger. I need to be allowed to grieve for what I've lost in my life. For lost moments. Lost opportunities. Lost dreams. The grief cycle is very real and I feel like I'm experiencing it all at once. I need the time and space to go through it.

It's a lot to take in. I feel like the burden is so heavy right now. It's so hard to carry it alone. There are so few people who can understand. 

I'm so grateful that one doctor listened a year and a half ago. I'm so grateful that he did such extensive blood tests that it required 15 vials of blood! 15!!! I'm so grateful that he was astute enough to see that I desperately needed help. That doctor literally saved my life. I was at my very limit and he was my last resort. I wish I'd gone to see him so much earlier, but I'd been to doctor after doctor after doctor and I was exhausted of it all. This one doctor set me on a path that can take me to better health. I will never be cured. Unfortunately, that isn't an option for my diseases. BUT. I can get into remission. I can feel better than I have for half of my life. I can finally allow myself to feel some hope that there is a better path ahead for me.

Autoimmune diseases are the devil. But this devil can finally be put to rest.

Christmas Prep

 This year, I've had a hard time feeling grounded and settled. Part of it is that my healthcare has been a roller coaster (more on that below) and part of it has been the state of US politics. Both have had me feeling like I'm spiraling.

After being diagnosed with Axial Spondyloarthritis with a possible combination with Rheumatoid Arthritis back in April, I had a series of medicine trials to see if they'd help. Nothing did. I was in pain all the time. It wasn't severe all the time, but it was THERE. Sometimes it was really bad. All in all, it was pretty miserable.

Finally, my doctor decided to proceed with twice-monthly injections of the generic brand of Humira. I was concerned about the cost - Humira itself is over $8000 a month, and the generic isn't a whole lot cheaper. My doctor told me about cost-reducing programs that I could qualify for and reduce my cost to nothing. This begs the question of why it's so expensive in the first place, but I digress.

My insurance denied coverage of the generic, but said they'd approve on-brand Humira. This makes no sense, unless you look at it like the insurance company probably gets a pretty good chunk of a kickback with brand name drugs and not so much with generics. My doctor says it's all a big scam and I'm pretty inclined to agree.

I started the Humira and after about 8 weeks, I started noticing a big difference. I wasn't hurting when I woke up in the mornings, the nodules that had become quite large in my hand joints were shrinking, and I was able to stand for longer periods of time without my hip joints seizing up. I was ecstatic! Finally something was working, I had answers, and I was on the way to being able to live a more normal life.

Enter new job, which came with new insurance. I was able to get one last refill under my old insurance, and then the waiting game started with my new job. I knew I wouldn't be covered until October 1, so I'd made arrangements with my doctor to get a sample of the generic medicine to tide me over until I could get the new insurance in place. I tried for most of September to get in touch with someone who could get me my insurance information so that I could get the preauthorization process started. I wasn't having any luck at all. I finally emailed the HR director at my new job, and almost immediately got a pretty nasty response back and I should have contacted her to begin with, she could have helped me, blah blah blah. I didn't contact her initially, because how was I supposed to know that she had my insurance information?! I don't feel like that's a given. And every other interaction I've had with her has been not so positive. She's been very snarky and pretty nasty with me with questions that I've had. Hello, sorry I just changed jobs and am trying to familiarize myself with your procedures. OF COURSE I HAVE QUESTIONS.

Anyway, with that information, my doctor was able to get the process started to get preauthorization. Surprisingly, it came back pretty quickly and was approved. I was relieved. I could continue my medication without a whole lot of interruption. 

HAH

Not so much. I was able to get one month of Humira, and then when I went to refill on time, it was denied. The pharmacy (in Orlando, Florida) said that my insurance had said I already refilled for the month. I most definitely hadn't. Long story short, I won't be able to get my medication again until just before Christmas, so now I've been off for 2 months. It took that long to feel any relief when I first started, and I've regressed a lot. Those hand nodules are coming back, and it's been harder to use my hands. I can't stand for longer than a few minutes at a time, my joints are creaky and loud, and I wake up in pain every single morning. It takes almost an hour for things to feel better and for me to get going. UGH.

Add in the stress of a super contentious country right now, and faced with more of the same for the next four years, I was just done. I knew I needed to do something to bring hope into my life again, because I sure wasn't feeling it.

I decided to put up my Christmas decor super early (before Halloween O_O) because it always makes me feel centered and calm. It really has done the trick this year. Though I'm still going through the medical drama and I don't feel a whole lot of hope in the US right now, I *do* feel it in my home. Christmas has that effect on me and I love it.

My apartment smells like cinnamon, my tree is glorious this year, the farmhouse charm is all over the place, and I feel happy here. I love Christmas more than any other time and I'm happy to bring it around early this year.

Here's to a more hopeful future.

Deadlines and roadblocks

 The last couple of months have been full of deadlines and roadblocks. I'm in my last term of grad school (for the second time - I know I'm insane for doing this twice) and I've hit so many brick walls. I had one class that had to be moved over to this term from the last, because I wasn't able to finish it in the term. So instead of only having my capstone projects to do, I had that class (and its 3 projects) in addition. I've been dealing with health issues for such a long time, and last fall, it all kind of came to a head. I just wasn't well and I was getting nowhere with doctors. (On the positive side, I finally saw a doctor who listened, believed, and got me in to someone who could help.) Grad school had to take a back seat.

I got the carryover class finished up, thankfully, and got started on my capstone. It's the compilation of research that I've conducted and an analysis of the data. I was doing really well! Then I hit yet another wall. In addition to the Axial Spondyloarthritis, I tested positive and have symptoms of Rheumatoid Arthritis. My doctor said I'm Stage 3, meaning that I've started developing nodules in the joints where my fingers attach to my palms. It's pretty gross, so definitely don't google. I did and I regret it. Damage is permanent, but progression can be slowed.

Over the last few weeks, I've been jumping through hoops and have spent HOURS on the phone with insurance, pharmaceutical companies, and doctors. I finally got everything done and approved, so I'm able to continue treatment. It means twice monthly injections, but the needle is so tiny that I can't even feel it. And, since I've been on samples from the doctor for the last month and a half, I think I'm starting to notice a difference. The nodules in my hands have actually shrunk a little. I'm hopeful that I can make it into remission, which would mean a much lower level of chronic pain. It's a future that I honestly hadn't considered, so I'm excited that it's even a possibility.

Anyway, all that to say that I've been so overwhelmed between health and grad school that I've neglected to do anything here. I know it seems to be a pattern, and honestly? It is. I'll do really well for a bit and then fall off. So really, this is just an update and a disclaimer that I'm definitely likely to drop off again. Such is life.

Spiritual Sunday #2: Tender Mercies

I've been thinking a lot about tender mercies lately. If you're not familiar with this term, it's when something just falls into place and feels like a small blessing from heaven. I've gone through times where I feel like I'm not seeing any tender mercies and times when I see an abundance of them. I'd like to share something that started out feeling definitely NOT like a tender mercy and changed into one.

It's no secret that things at my job have been stressful this year. I've been open about that. I've struggled with a lot of physical and mental health issues in the past few years, and it seems like they've been worse this year. Add in the increasingly hostile attitudes towards teachers and public education, and it's been a very tough time. It's hard to be classified as the greatest evil in the country, when all you're trying to do is help kids reach beyond their potential and discover a love of learning. It's hard to see your profession being targeted in so many different ways. It's hard to see states passing laws that literally single out teachers and teacher unions, when other unions are left untouched. It is infuriating when a teacher who is shot by a six-year old is told that she can qualify for workman's comp because being shot is PART OF HER JOB. That's just ludicrous. (The teacher in question is suing her district for $40,000,000 and I hope she wins. Send a message that being shot and/or killed is NOT part of our job. Our job is to teach. End of story.) I don't understand why people who live out their lives in service to their communities are suddenly the devil. I am tired of being collectively called a groomer, an indoctrinator, a threat to society. It's ridiculous and blatantly untrue. I guess people need a boogeyman to blame so that they don't have to take responsibility for their own actions.

Last November, things really came to a head. I was feeling so discouraged about the constant pain I feel and the way education is going, and my mental health tanked. I've been seeing doctors constantly since my hysterectomy in November 2021. I've had so many issues since then, and the pain has increased significantly. It's not excruciating all the time, but it's ALWAYS there. It's like a level 3 every minute of the day. It's so wearing.

I was getting so discouraged by the responses I was getting. Literally every single doctor told me that I was experiencing the effects of menopause. I knew I was having *some* effects from menopause, but all of it? I kept seeking answers, only to be told the same thing over and over. I decided that it wasn't worth my continued frustration to keep seeing doctors. I pretty much gave up on ever feeling better again.

Then in November 2023, two years after my surgery, my mental health tanked. I felt like I was scraping the bottom of the barrel. It was so bad. I was contemplating harming myself, even going so far as to consider perhaps dying by suicide. I had a plan. I HAD A PLAN. Looking back, it's terrifying how close I came. As soon as I realized that I had the means to carry out my plan, I freaked out. I got rid of the medications I was planning to mix, and sought help. The counselors in my area have had a massive wait list since Covid, so I was worried that I wouldn't be able to get in. I knew I didn't have time to wait for the eighteen months it could take. Add in the eating disorder I have been struggling with, and it was a recipe for disaster. (I have atypical anorexia - I don't look anorexic by any stretch, so it's been very hard to get any help or anyone to actually believe me. I just don't eat when I'm alone. I have gotten very good at looking like I'm eating when I'm around people, but it's usually very little and I move food around on my plate a lot to make it look like I've eaten a decent amount. At home alone, I rarely eat. I have gotten extremely good at shutting down hunger signals. My body has gone into peasant mode, and hoards calories because I am literally starving it. Atypical anorexia is extremely dangerous because it doesn't look like anorexia. People struggling with this are statistically less likely to get help because no one believe them. It's deadly.)

I decided I was going to try and see a different doctor. I was going to beg for a referral to a therapist so that I could get the help I desperately needed. When I got an appointment with Dr. Rammell, I was honestly expecting the same thing I'd been dealing with for years. Instead, I got a doctor who spent almost two hours with me, going over literally everything I was experiencing. He listened. He took time to think about what could possibly be the cause. He never once said it was menopause. He said that whatever it was wasn't helped at all by menopause, but menopause definitely didn't cause what I had been going through. At that point, I began to cry. I couldn't help it. I was believed. I was listened to. I was going to get help. 

Dr. Rammell took a ton of blood for test after test after test. He poked and prodded. He listened to my organs and poked some more. He validated my fears about the eating disorder and said it was very brave of me to insist on getting help. He referred me to my current therapist. When my blood tests came back, he called me personally to tell me that I'd tested positive for autoimmune antibodies. I'd heard of autoimmune diseases, but I certainly didn't think I'd possibly have one. I knew basically nothing about them.

He went on to refer me to a rheumatologist who could drill down and accurately diagnose me. It took almost 6 months to get in, but I did. I'm now under the care of Dr. Scoville in Idaho Falls. My first appointment with him took two hours. TWO HOURS with a highly regarded rheumatologist. I couldn't believe it. It took him almost an hour just to question me about what I was experiencing. Then he did more tests. Blood work, flexibility, ability to walk, range of motion, etc. In the end, he said that I am a textbook case of the autoimmune disease Axial Spondyloarthritis (ASA). I'd never heard of that. Basically what it means is that my body is trying to fuse my joints. It starts in the SI joint, hips, mid to lower back, and chest. These are the areas I've had the most pain in. I've been experiencing chest pain for the last 2 years, and I've been to the ER twice in fear of a heart attack. Both times I was sent home with an anxiety diagnosis. I mean, I DO have anxiety, but it wasn't the only cause of my chest pain. To be fair, ER doctors don't have the time to get to an accurate diagnosis. They're there to treat the current issue, and then get you to someone else. In my case, I wasn't referred to anyone else because they really did think I was just having a panic attack.

Photo Credit: My photo of a painting by Yongsung Kim

My disease is incurable. I will have some level of pain for the rest of my life. I will have flare ups when it gets worse. The tender mercy comes in because I CAN be treated. I CAN have a better quality of life. I DO have hope for a better future. I am now on medication that helps control the amount of inflammation, which causes the fusing, which leads to the pain. I haven't noticed a difference in the amount of pain I have during the day, BUT, I have noticed a significant difference in the amount of pain I experience during the night. I've been waking up in pain multiple times a night for YEARS, and I have to get up and walk laps to calm it down. I haven't had to do that after the first week of being on the medication. It's been such a blessing to wake up feeling more rested.

Something that seemed so dire in the beginning actually ended up being a tender mercy because it led me to getting the mental and physical help I needed to push through and work towards getting well. I am in treatment for my ASA, the eating disorder, and some past trauma that hasn't ever been fully resolved. I am making progress! I am working on a better relationship with food and trying to eat small meals at regular intervals. I have started doing yoga because it's one of the exercises I can do (I can no longer do any jumping, twisting, vigorous exercise like Zumba because of the ASA). I am walking more because it's also something that I can do and that is helpful.

Tender mercies come in strange ways sometimes, and they're not always easy to recognize in the moment. In the end though, it becomes clear that what started as a disaster with the potential to turn into a catastrophe was actually a means to get help. God works in mysterious ways.

Coming Back after the Flu

Man, last week was ROUGH. I tested positive for influenza and missed the entire week of work, which I haven't done since I had my hysterectomy 2 1/2 years ago. I was so so so so so sick. I didn't even do much reading, which tells you how bad it was! 

Coming back though, was so sweet. Not only because I was going crazy at home, but because my kids were so excited to see me again. I had so many hugs today! It was really nice after a week of zero contact. One thing that really stuck out to me was that several of my kids said they were so happy to have me back because people do what they're supposed to do when I'm there, and that they KNOW what the expectations are with me. There aren't any surprises for them. That's one thing I'm pretty good at - consistency. Kids need it! They crave it, even if it's hard to put it into words.

Being there with the kids is my favorite part of teaching. They're why I stay. It would be easier (much easier) to go a different direction and get into a profession with more respect, better pay, and everything I need to succeed. Public education gets a really bad rap, and sure, in some cases it's deserved. But MOST of us are giving our very best to help these kids succeed. I wish more people would come in and SEE for themselves, instead of listening to talking heads who don't actually know what they're talking about. I wish people would stop trying to gaslight educators into thinking that the way we're treated and paid is appropriate, because IT'S FOR THE CHILDREN. You know who else is in it for the children? Pediatricians. Show me a doctor who gets treated, disrespected, vilified, and paid like a teacher and I'll shut up.

For now, I'll keep doing what I do best: meet kids where they are and help them push harder and reach higher than they thought they could.

Teachers and Being Sick

One thing about teachers is that it's usually easier to just go to work sick than it is to prep sub plans and even find a sub. I'm on my third day out this week (hopefully will be back tomorrow), and I can tell you it would have been MUCH less hassle to just go in. I've felt horrendous, but it still would have been easier. 

The last two days, I was lucky enough to have a sub (not a good one, but a warm body at least). Today, not so much. I listed the job on our sub website, but no one picked it up. It's so hard to get a sub at the best of times! What on earth to do when there's no sub and no way you can go in? You'd think that with my anxiety, this would be a very tough call and one that I stressed about endlessly. However, I have an AMAZING team. We look out for each other. We help each other out. We ALWAYS have each other's backs. Today is no exception. I found out from my aide that instead of being upset, my partners just split my class and went about their business. 

This doesn't surprise me in the least. It's what we do. I can't even count the number of times that we've needed to split a class for whatever reason. I feel incredibly lucky to work with two people who truly do have my back. I have theirs too. I can't think of a time when we didn't function like this. We've been together for seven years and we've created something special. From a teacher standpoint, it's a dream team! One that you search for and hope to eventually find. We're incredibly blessed. 

I know I'm lucky. It can be rare to find what we have. We're three alphas who set that aside to work together for the benefit of our kids. There are no egos involved, because it's not about us. Everything we do is about the kids. These two teachers are my best friends and basically family. We do things together outside of work. We joke that we're buy one, get two free. If I could, I'd teach with these two forever!