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.

How is it March already?!

 Holy cow, 2025 is flying. It's already March and I'm wondering what happened to January and February. Interestingly enough, January felt like it lasted two centuries while it was happening, but looking back, it seems like it wasn't even there. Maybe that's a good thing.

Here are some things that have been happening:

1. I finally finished a cross stitch project that I've been working on for years. 

2. I got some tools to make cross stitching easier. With my autoimmune diseases, my hands hurt a lot of the time, so cross stitching was nearly impossible. Plus, I can't see as well. So I got a magnifier light, a lap stand, and a large frame for larger projects. It's wonderful to be able to work on my projects!

3. I am learning how to make French macarons. My first attempt was actually not bad! 

4. I am also nurturing a sourdough starter named Edna. So far, Edna is not being very cooperative, so I'm trying to figure out how to proceed from here. I don't want to start over, but I might have to. I was hoping I'd be ready to make my first loaf of bread this weekend, but it wasn't meant to be. Hopefully this coming weekend.

5. I am holding firm with my boundaries. I get to work at 7:20 and leave at 4. There isn't a lot that I'll do at home, unless it's something simple like laminating/cutting. Having firm boundaries has been a game changer for me.

6. I am writing to my elected officials regularly regarding concerns...I have a lot of them. Honestly, the political climate in the USA right now is beyond toxic and scary. It's doing a huge number on my anxiety, and I'm having a hard time finding ways to cope. I'm back in therapy, and I'm also writing lots of letters. I am not going to give up on making my voice heard. 

I'm happy that I've been able to spend more time on hobbies this year, and I'm looking to start cooking more. I really enjoy cooking, but it's been very difficult these last few years with my diseases. Standing longer than a few minutes at a time is very hard and painful. So I'm trying to do what I can.

Goals for 2025

 I sat down this weekend and made a list of things I wanted to work on for 2025. I need to make 2025 the year of ME. I am SO BAD at self-care, and it's taken a huge toll on me, both physically and emotionally. I want to have a healthier year in every way, in the hopes that I can manage my illness better.

Here's what I want to work on:

Study scriptures nearly every day

Save towards vacations

15 minutes of purposeful exercise

Less TV

More books

Less online shopping

Do more hobbies (reading, cross stitch, embroidery, sewing)

Cook more

Learn to make break and macarons

Pack actual lunch for work

Keep house clean and uncluttered

Weekly/monthly chores

Be social for real

Host monthly game nights with friends

I want to really focus on things that I know will boost me and give me a reason to look forward to each day. One of my favorite authors does something every year: begin as you mean to go on (BAYMTGO). I am going to make this my mantra and have a great year!

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.

It's been a hot minute...

 I don't think I realized how long it's been since I last wrote! Yikes. The pattern settles in again.

In my defense, things have been bonkers. I had to move my classroom and get it set up, I moved apartments and have had to get all unpacked and settled, school started, parent teacher conferences, my dad had major surgery and was in the hospital for over a month, the election that gives me more stress than anything...the list could go on and on. Life caught up with me and it hasn't slowed down. 

I ended up starting my Christmas decorating way early this year. It's one of the things that can help me settle when I'm struggling, and boy have I been struggling. I'm hoping that things are on the verge of settling down and not settling in. Fingers crossed.

My new school is great. I really love it up in St. Anthony, and I really love my school. Obviously, it's not perfect, but it's really great. I have a really good team and fantastic administrators. I feel super supported and I'm finding my footing. My class is settling in and we've hit our stride. We're able to get a lot done and the kids are working hard. I've changed up a lot of the way I do things so that I could meet their needs better. We work super hard Monday through Wednesday, then Thursday mornings are math games. I get out games that reinforce what we've been learning and then we play. I've taught the kids a bunch of games that I used at Kennedy, and they love them! They're all working so hard to be able to play math games on Thursdays. I love it! 

One big thing that happened was that on election day, I was driving up to work. It had been snowing all night and it was cold enough to freeze. Once I got to the north Rexburg exit, the roads were icy. I slowed down and continued north. As I got further along, I heard my Grandpa Sonderegger's voice tell me "You stay in this lane. Stay in this lane no matter what." It shook me, but I listened. I am so glad I did. As I got closer to the county line, I was getting near the North Fork bridge. I saw a big black truck driving down into the median, and I thought for a minute that it was a police truck changing direction to head after someone. I thought that until it started spinning and then jumped the barrier and came right at me. I was terrified, but I kept my cool. I know it was because Grandpa was there with me. The truck came so close to hitting me that I could see the tread on the tires. It kicked up a pretty large debris field, and I did get hit by that. Looking back, there is literally only one way that I didn't get hit - God protected me. I should have been smashed. I would have died if I'd been hit. It was that severe. There wasn't a safe spot to pull over, so I called 911 as I continued north. It wasn't until I got to the construction south of St. Anthony that I realized that my windshield was badly cracked. There were little impact craters too, plus a lot of scratched glass. I need to get it replaced. 

That experience has had an effect on me for sure. It was so scary. I held it together until I got to school and then I broke. It was so hard to be there that day, but I also knew that if I went home, I'd be home alone with my thoughts all day and that wouldn't have been good. I stuck it out even though it was so hard. I've been trying really hard to reframe my thoughts when I drive past that bridge now. Instead of thinking of it as the place I almost died, I am trying to think of it as the place where my life was saved. I guess it's not my time to go. I'm glad of that. I'm not ready.

That's it, in a nutshell. I'm hanging on for dear life, but I *am* hanging on. This too shall pass.