Chronically Sick Poly Diaries

Living with a chronic illness is incredibly challenging. Every morning, I wake up and assess my pain levels and the medications I need to simply function. Even on my best days, I experience some level of pain. It's hard to accept that I shouldn't be in any pain at all – it feels abnormal.

Simple tasks like climbing stairs are difficult and even dangerous due to my clumsiness. Holding a pen for extended periods causes significant hand pain, making it impossible to enjoy my passions for drawing and painting. It's heartbreaking.

Rhinestoning is currently the only activity I can comfortably engage in, and I cherish its creative outlet.

My mobility issues worsen in cold weather, making it feel like I'm wading through quicksand.

I think I'm slowly emerging from the grief stage of this illness. My life has been completely disrupted, and even after almost a year, I'm still adjusting. My rheumatologist suspects another autoimmune disease, which feels like a cruel twist of fate. It's frustrating to constantly re-evaluate my plans and abilities. I just want to find the right medications and improve my overall function.

I have so much to share with you all, and I think it’d be more fun to break it down into a list of topics instead of cramming everything into one long post.

Let’s kick things off with my weekend! My little family went to a Renaissance faire, and it was a blast! I was the only one in my family who had been before, so it was such a joy to see them experience it all for the first time. I definitely got a little carried away, even with my forearm crutches.

I made my first mistake by forgetting my armband for my visible app, which helps manage my energy levels. So, in the excitement of the day, I totally ignored my body’s signals. Now I'm feeling it, with sore arms and a sore back! I’m thinking it might be time to switch from my crossbody purse to a small backpack. I’ve never been a huge fan of backpacks because it can be tricky to reach my phone and keys, but I’ll look for one with some smaller pockets on the outside. Having the weight distributed in my back will surely be kinder to my neck and back.

The faire itself was incredible! My husband surprised me with the cutest little obsidian rock shaped like Toothless, which I’ll treasure forever.

Sadly, I lost almost all of my little trinkets from the day—totally forgot to pick them up when I had to take a break. Oops!

Overall, it was such a fun weekend, even though I’m still feeling the effects. At least I haven’t experienced any arm numbness or tingling like I have on other days, and I’m feeling a bit more energized. I’m still navigating this journey, but I’ve been keeping an eye on my visible app to make sure I don’t overdo it and I’m trying to manage what I can.

Why is it that when you suddenly become chronically ill, you can feel so lonely and disconnected from everyone? Is it just me, or is this feeling part of the journey of figuring out who you are now that you have limitations you’re struggling to accept?

Since February, I’ve noticed my health declining, even after I switched to a Mediterranean diet and managed to lose about 50 lbs. But then the pain kicked in, making it hard to walk some days. And when summer arrived, things got tougher. I started developing a butterfly rash and other rashes every time I was in the sun, which hurt even though I never got sunburned. I used to be the kind of person who would tan effortlessly after just ten minutes in the sun. This summer, I felt more like a vampire, trying to avoid sunlight at all costs. I even bought a cute little parasol so I could enjoy being outside when I needed to.

I feel like I’ve been stuck in the grieving phase, realizing that this isn’t just going to go away. I need to learn how to navigate daily life while managing chronic illness. Yes, I’m sad, and yes, everything hurts all the time, but just sitting around feeling down isn’t going to change anything. I really want to find a way out of this pit of despair and move toward acceptance.

Part of me thinks I need to ignite some passion within myself. But where do I start? Maybe I should be more open about what I’m going through. I’m working hard at being a good stay-at-home mom, but it can feel overwhelming. Since I can’t work at the moment, why not focus on personal growth? I’ve got a big house that usually stays pretty tidy, but I struggle with finding a consistent schedule. My ADHD loves order, but my body doesn’t always cooperate.

I genuinely want to be a great mother and partner at home. I want to lighten the load for everyone else so that I feel like I contribute something meaningful. Finding that purpose is key for me—I want to wake up excited to take on the day, even if I have a flare-up. Maybe it’s a bit of a dream, but why not give it a shot?

I’ve been searching for other moms who may not have it all figured out at home but are managing chronic illness while trying to improve themselves. I couldn’t find any! If you know of anyone, please DM me, tag them, or let me know how I can connect. So what’s my next step?

First up: shifting my mindset. I need to stop wallowing and start making a plan. Just changing my perspective and looking for the positives helps a lot (especially when I'm not on prednisone; it makes it easier to not feel sad or angry).

Next, I might try a brain dump—writing down everything I want to accomplish around the house, including what a 'perfect' schedule would look like. Then, I can color-code tasks based on importance, so I know what to focus on each day. On days when I’m flaring, I can start with the essentials and see how much I can do after resting.

I’m still in the early stages, but I wanted to share my thoughts with you. If anyone has ideas or strategies that work for them, I’d love to hear your suggestions!

Thanks for taking the time to read my ramblings! I’m thinking about documenting my journey as a stay-at-home mom dealing with ADHD, BPD, and chronic illness. Who knows? Maybe that’ll be the next step!

I'm sore.i had a moment of barely any nerve pain the er gave me a 15 min ketamine treatment and it lasted 4 days. It was crazy how bad I felt and was able to feel happy control anxiety and nerve pain was like a 1 or 2 and that was crazy to feel. I felt like I could hold a job. Yet I look for chronic pain ketamine treatments and it's not covered by insurance and so I would have to pay 1400 or 1600 for about 6 months of no pain. But I can't afford it I need to control my pain before I can work. And so I'm screwed there.

Then I finally can get into a rheumatologist. But they are out of pocket for office visits and in las vegas. So I need to come up with $320 before I can even make an appointment and I need to get at least a plane ticket and uber/Lyft to and from airport. I can get at least get some back from insurance if they approve. But I'm so screwed and can't afford that.

I'm sick of all this. Why can't it just be easy to manage your body and have the tools to live my best life... I'm miserable and idk if I'm strong enough to deal with this the rest of my life. Fuck I'm done with this pain and these feelings.

Before 4th of July I went to the ER. I didn't want to because I felt nothing would be done again. But my husband came home from work took one look at me and told me were going. I was crying dying on the bed with every nerve in pain at this point.

I didn't feel hopeful. I also keep thinking I can't do this I'm not strong enough to handle this pain forever. But we get to the hospital I felt heard finally. They listened and did explain that the er isn't really set up for chronic illnesses. But he asked me if I heard of ketamine and I said no and he told me how it can help with depression anxiety and even nerve pain. He gave me a dose in the hospital. It felt weird everything was like floating in waves. I didn't love the feeling of not being in control and the fact I couldn't shut up and everything my mind thought I said. It was embarrassing. But after the iv of it I went back to normal I just felt a Lil floaty and apparently I got easily emotional. But that only lasted that night but I didn't feel anxiety and my nerves went from a 9 to a like 2 for pain level. And it lasted for a few days. It felt like I could handle life it wasn't like before getting sick but I felt like me almost again. It's coming back now with the pain. Luckily at the hospital that doctor also got me on gabapentin started at a baby dose. And yesterday my doctor is upping it to help the pain while I wait til the 26th for pain management. When it started coming back. Like my nerves started coming back fully online. And I cried I didn't realize how much pain I am in everyday when you almost get use to it. It's made me sad and I Jaye feeling like this. But I know there is hope and I have hope. Today I was able to get into rheumatology in vegas. And I could possibly get in to see someone by next week. I'm excited bit scared too.