Totallyfunkless

An old photo, but an extremely true one.

Unless you’ve experienced chronic pain, you’ll truly never get it. Pain 24/7 is HORRIBLE. I wouldn’t wish it on anyone.

I am exhausted.

Had an absolutely lovely time with yesterday (and today) at the National AccessAbility Week event!

I am so proud of you for your work and everything you do to help others in the disabled community. And your first public speaking event was kickass! 💖✨

Thank you to those who came out to see us, connect with us, and share your story with us. We appreciate you so much! ✨💖

Well I got the results from my sleep test!

I have moderate sleep apnea, and need a CPAP machine.

I slept 5.6 hours and woke up 20x an hour.

I also got ZERO REM sleep that night. SO. Yay.

Here we go, it’s always something lol ✌️🥲

Remicade day! 💉 We are at every 4 weeks now ✨

Don’t forget about my book She’s Always Sick available on Amazon 💖✨

All about my experiences as a chronically ill and disabled woman. ♿️

https://a.co/d/0hRifnQV

fibromyalgia

Sigh. The comments that get old real quick.

May 21 is an incredibly sad & difficult day for me.

May 21, 2021 — my best friend Karn passed away.

May 21, 2024 — my best friend Casey passed away.

May is so hard. I miss my friends so incredibly much. They were bright lights and they are so greatly missed by everyone that knew them.

Death and grief are hard. I’m still grieving everyone I’ve lost and I will forever. I try to honor them when I can, because they don’t deserve to be forgotten. Ever. These two humans were such good friends, people, and were people I felt extremely close to.

I miss you, Karn and Casey. Forever. I love you. 💖

I just learned that today is World IBD Day!

Although my IBD isn’t active currently, I did go through hell when it was.

I have Microscopic Colitis. The flares were not something I would ever miss. Nights spent on the bathroom floor, curled up praying it would end and the weakness that followed.

My diagnosis process wasn’t too long, but the 8 week flare in 2022 felt never-ending. I had no idea what was going on and it was scary.

After a biopsy during a colonoscopy, I was diagnosed. I tried some treatments that barely worked, but then when I started Remicade in late 2022, it targeted my MC as well. Thank god.

I’ve been flare free for a few years now and I feel so incredibly lucky. 💖🫂

What you see vs. What you don’t see (when you look at me)

I saw the neurologist today! So she talked to me a lot about peripheral neuropathy and my sciatic nerve. She said I would need a nerve conduction study but I would have to go to her other office — so instead I am going to get a referral from my family doc for someone closer to do it.

I also need to start physiotherapy for my low back/sciatica as that should help me as well.

In terms of treatment there’s not a WHOLE lot to do other than a few meds but I am already on a high dose of pregabalin, so I’m going to talk to my family doc and hopefully the new neurologist whenever that is.

Overall grateful she is so knowledgeable and spoke to me in detail about all of this.

ALSO!

The family doc’s office called cause they got the neuro’s note and she wanted to talk to me (this was quick as hell!) so we had a virtual appointment

She is referring me to the neurologist I saw a few years back for the nerve conduction study and to see his opinion BUT because I’m on such a high dose of pregabalin, she genuinely doesn’t know if there’s much that can be done.

But she said to get his opinion because he is the neurologist it just might be a long wait.