chroniclyillpolybat - Tumblr blog

[chroniclyillpolybat]

Even tho we are trying hard to be positive about our health conditions, why does it seem like a life sentence and hopeless sometimes.

[chroniclyillpolybat]

Just in case

[chroniclyillpolybat]

Hey everyone! I know I've been a bit quiet lately, but I'm really looking to change that! I’ve been having a tough time focusing for a while, but things are looking up now. Getting through the first week of school with the kids has really helped me settle into a better routine.

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.

Now, I’d love to hear from you! What’s your favorite D&D class, and why?

[chroniclyillpolybat]

I wrote about my weekend and posted it. It disapeared so i am writing this just to see if it stays

[chroniclyillpolybat]

I’m so proud of people living with chronic health conditions. That shit is HARD. Idk who needs to hear this, but if no one else has said it: I’m proud of you. You’re sticking it out through so much pain and grief. That’s no small feat.

Every small thing you do for yourself health adds up. The grief is heavy and it comes from a place of love. The grief knows the pain is wronging you.

I’m proud of you. I hope on the good days you can be proud of yourself.

Keep going.

[chroniclyillpolybat]

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!

[chroniclyillpolybat]

Got to rhinestone my forearm crutches fir everyday use. Turned out si pretty

[chroniclyillpolybat]

I have so much going on I feel sl overwhelmed.

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.

[chroniclyillpolybat]

I wish I knew a place I could just scream and let it all out

[chroniclyillpolybat]

So much has happened but I haven't had the energy and clear mind to talk about it, brain fog sucks.

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.

[chroniclyillpolybat]

As we celebrate Disability Pride Month, let us not forget the importance of accommodation. It is crucial that we all make an effort to accommodate ourselves, our disabled loved ones, and even strangers with disabilities in any way possible. The world can be a harsh and unforgiving place for those with disabilities, so let us strive to make it a little kinder and more accessible for everyone. Let us show compassion and empathy in the smallest of gestures, making the world a better place for all.

[chroniclyillpolybat]

Getting diagnosed with a chronic condition is easy! Just follow these steps:

Have symptoms

Schedule doctor visit

Wait indefinitely

Repeat

[chroniclyillpolybat]

When you find out you have a chronic illness, it's like a big slap in the face - you realize you'll never be 100% healthy again. It's hard for people who've never been through it to understand how it feels to just accept that your life will never be the same. You have to carry this extra burden with you for the rest of your days.

[chroniclyillpolybat]

[chroniclyillpolybat]

“slut era” i whisper to myself as i rot in my bed, sick like a frail victorian child

[chroniclyillpolybat]

[chroniclyillpolybat]

Got a referral to a Rheumatologist from my primary the other day.

The guy was running behind on appointments, so I waited almost an hour to be seen (which I agreed too and was okay with!)

When he finally walked in, he took one look at my feet which had turned purple from waiting and sitting so long. (Something I have chronically been dealing with since I was in my teens, I’m now in my mid 30’s)

He asked me a few questions and was shocked to find out no one had diagnosed me with Fibromyalgia as I checked almost every symptom.

Just from our first meeting he not only gave me a nerve pain medication, but also an anti inflammatory injection as well as a nerve pain blocker shot for my legs.

I had 14 vials drawn for multiple tests he wanted, and x rays done of my entire spine and every one of my body’s joints.

Next week I get to have multiple skin allergy tests, food allergy tests as well as EMGs for both my upper and lower body.

I got home and cried- because for over 20 years I thought I was being dramatic about how much pain I have been in and that I was just lazy because I couldn’t push past my brain fog and fatigue.

The next morning I woke up and my body looked like I had lost 20lbs because of how much my inflammation had gone down.

All this to say don’t EVER stop advocating for yourself, if something feels wrong and painful, don’t stop until a medical professional will take you seriously.

Because remember folks the normal amount of pain anyone should be in is NONE!