2026 Has Been Rough

Last week my mom was in the hospital for her heart. She seems to have a medical crisis every year, but this one was by far the scariest. Well, that's not true. In the moment they are ALL terrifying. But this one was the closest to death I think she has come. I was sure she was going to die. I'm not ready for that yet. Not ready to lose her from my life forever. But will I ever be? I'm sure no.

This year has been crap for me medically as well.

 

 Eye infection in January. Starting the year off with a BANG.

 

Bad pink eye in February. Yes, it spread to the other eye. 

 

Urinary Tract Infection (UTI) in March. The fun just keeps coming.

Hives that pop up after compression, touching grass, hay or my dog's claws. Or just because.

 

My fingernail strangely lifting up off my nail bed (2 of them.)

In April I had another round of pink eye. But I didn't take any pictures this time. This will have to do...

Now it's May and I woke up with thrush yesterday. Fuck my life. 

This is a great reminder for me.

 

I had some labs done recently since I told my doctor I've been obviously have immune problems. 

She's referred me to a rheumatologist. I haven't seen one since 2018 (when I also had positive labs) and it wasn't a great experience. They thought I had Rheumatoid arthritis (RA), but it ended up being Mitochondrial Myopathy. I was put on medication that just made my symptoms much much worse (plaquenil) for RA. So needless to say I'm nervous about it.

 

Next week I'm seeing a neurologist for the second opinion about my "silent seizures." Does she agree that I have them?

 

Then comes the ENT to review treatments for my right year that likes to plug up on me for days on end when the pressure changes.

 

Also the gynecologist to talk about possible HRT to help my post-menopausal symptoms.

 

In the meantime I'm hoping to get my referral for Botox for migraines. I've been fighting with them about that since November. 

 

And people like to ask what I do with "all my free time." The answer is I don't have any. 

I feel like I don't even have enough to do art, When I'm not doing all this I'm trying to keep up with my precious pups, the house or with the people I love.  Of course I also spend a huge chunk of my day unconscious.

 

So yeah. 2026 has been kicking my butt.  

 

Help is on the way!

There's a quote floating around that I think most people have heard. It's misattributed to Einstein when really we don't know who said it first.
"The definition of insanity is doing the same thing over again and expecting different results each time."
Personally I strongly feel that sums up seeking out health care help perfectly. Each time I talk to or go to a doctor (or specialist) I feel like I'm just saying the same things over and over again, but expecting different results.

I messaged my primary care doctor late yesterday in frustration from the muscle weakness in my arms and legs coming back on. I had felt like it was getting better, but then it was back to being a bit worse. I messaged him asking if there's any way he thought the muscle weakness could be connected to my back problems. He messaged me back quickly (which I hugely appreciated) saying "Do you have pain in your neck and back?"

This blew my mind because:

1. YES!
2. I've had neck and back pain as long as I can remember (as in I literally saw my first chiropractor for back pain around age 5.)
3. I've told him many times I struggle with chronic back and neck pain
4. He requested a back and neck x-ray not that long ago
5. He gave me a prescription for 800mg Ibuprofen for back and neck pain
6. I mentioned it again when he gave me a referral to the first neurologist a year ago
7. I mentioned it again a few months ago when talking about exercise (as in "I'd love to do more, but it kills my back." To which he replied "I have back problems too" and that was the end of the conversation about my back.)

To be fair he's not the only doctor I've talked about my back issues with, so it could just feel like I talk about it endlessly when really I may bring it up once a year or so. I'm willing to give him that. After a bit more back and forth he suggested I try Physical Therapy. This was something I had in the back of my mind anyway for the RA, so I happily agreed. I think my words were "YES! I'll try anything!" 

When I got my x-ray results a few years back I made this chart for myself to see where the damage was. I'm a very visual person, so I found it incredibly helpful. My doctor called it "multilevel disease" which was the first time I've heard that.

On top of the lovely bladder infection (that's getting better by drinking tons of water and unsweetened, disgusting straight cranberry juice) I also had some painful sores on my tongue. I suspect it's from coming off the Plaquenil. My body's trying to grope its way back to homeostasis (or something like that?) 

I gargled with salt water last night and it's feeling better today. 

Can you say "cootie monster?" 

I have cooties.

Despite all my complaining, I'm actually really relieved. I'm glad that I have a doctor who I can message and he gets back to me so quickly. I'm glad he had a new suggestion (something we haven't tried yet.) I'm glad that he thinks my back problems could be contributing to my other issues and that it seems like he really heard me this time.

And despite what it sounds like my life is much bigger than just all of THIS. I'm making some lovely salmon and rice with salad for dinner. I've been studying all day for a test I have to take this Wednesday for my license. I had a lovely e-mail exchange with a friend today. I'm seeing some family for lunch on Friday (hopefully to celebrate my passing of said test!) And I'm rocking my favorite pajamas as I type. See! Not so bad at all.