Uh, hi?

It seems as though my best efforts to keep up with blogging/journaling have yet again gone awry. Ah well. Onward and upward.

These last few months have truly been a struggle. I feel like that's basically the story of my life at this point. It's hard to feel like continuing to try is worth it. But here I am, continuing to try.

One thing that's been a huge blessing is that I've carved out time in every single day to engage in my hobbies. That's hard, because my hands don't always cooperate. It's really painful and difficult to do a lot of the things I enjoy, like stitching, coloring, and playing the piano. However, my mom saw a set of hand warmer/massagers and thought she'd get a set for me to see if they'd help my hands. Oh my word, they've been a miracle! They make it so my hands don't hurt as much and I've been able to spend more time enjoying my hobbies. I'm so incredibly grateful to my mom for this gift!

I got a piano! I've wanted one forever, but it always seemed so out of my grasp. First, because of finances, second, because I lived on the third floor for a long time, and finally, because of my disability. Things have been slowly changing, like a bit of a raise, moving to the first floor, and the hand massagers. There was still the matter of an actual piano though. But one ended up in the lobby of my school one day, and I asked what it was for. No one actually knew, and figured it had probably been donated or something. After some digging, we learned that it had been donated a long time ago by a former music teacher. I mentioned that if they needed to figure out what to do with it, I had the perfect solution - my house! My principal checked with the superintendent to see what the procedures were for passing it on, and there were no obstacles. So I now have a piano and I got it for free! I have loved playing and singing.

That's really all that's going on now. I'm getting ready for the end of the school year (it can't come fast enough!!) and prepping for next year. I'm ready for summer for sure and I'm looking forward to the break. I'm planning on getting a lot done around my home, playing a lot of music, doing a lot of stitching, reading, painting, and cleaning, and prepping materials for next year. I can't wait to be able to just be still.

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.