#spoonie win

[jerrixonichole]

Made a somewhat organized symptom tracker :) I am getting kind of nervous about my appointment at the hand surgeons tmrw so I tried to focus it onto something. Not too shabby for having the mental capacity of my toddler today :) also a shoutout to my awesome husband lover buns who helped me come up with a design that will be useable to me ❤️

[clinically-chronically]

Holy crap, I am thankful as fuck right now.

So a social worker/case management worker came over today to just kind of talk about my mental health and more things that I'm eligible for in terms for medical assistance. Holy crap I'm eligible for more stuff than I had expected.

I'll be eligible for a secondary insurance that will cover things that the insurance I'll be getting on. (I.e. if the main insurance won't cover a test or bracing/mobility aid the secondary insurance will)

Free tansportation for appointments within a 30 mile radius??

Home nurse/A personal care assistant.

Another social worker/case management worker that can help me with all of my mental health needs and physical health needs (like arranging appointments, etc.)

Yo.

Guys.

You have no idea.

How much of a better quality of life I'll be getting out of all this.

ALSO, she's going to give me the opportunity to become a public speaker for this disability/human rights event???? LIKE DUDES. MY BROS. THIS IS SO COOL!!!!!!

[raiinbow-love]

I WAS ABLE TO DRINK ALCOHOL TODAY AND NOT FLARE AT ALL!!! No IC, fibro, IBS, or migraine flares!! It’s been, god, about 4 years since I drank. I’ve been (mostly) in remission for the past year, so today I said fuck it! Went to a festival with my husband where you pay $25 for unlimited hard cider and beer. I had such a good time, it was so nice! :D

[sombraluz-the-shibe]

Spoonie Win!

I actually got to socialize today! I got to have fun and not be in pain for the Pokemon Go community event! I caught 2 mewtwo and some shiny chikorita. And best of all got to hang out with one of my good friends from high school. And I get to see my hubby later today. So happy! ❤

[jerrixonichole]

Goal!!

Took a shower! I decided to fight all instinct and demands from my achy muscles and joints and take the coldest shower possible. I have been having a hard time with my blood pressure and heart rate as well as blood pooling into my legs from the warm water. The hot showers would make me almost pass out after a quick five minute rinse off and I would be left wheezing, throbbing and exhausted. Tonight I had my husband sit by and char with me while I took a 20 minute tepid shower, shaved my legs, and even washed my own hair. I feel energized and light. Not a normal for me. Seems like this will be the new routine and a small step in the right direction of symptom management. Thank goodness my doctor finally has agreed to help manage the pain because I am sore but I now have some meds that can help a bit hopefully and I might get a couple hours of sleep tonight! Yay for seemingly small spoonie wins!

[trixieone]

I did the thing

It hurts. But I did the thing. I'm visiting my friend who is in the hospital. It is the first day he is allowed visitors and his husband can't make it due to work and school. I would been the fucking universe itself if I had to just to make sure he isn't alone for that hour when he can have family with him. So, I gathered all the spoons and energy drinks, took extra pills, and walked the two and a half miles here. I feel like I win at life today.

[whatshouldwecallchronicillness]

When I get a test and...

The doctor points to something on the screen and says, “That right there is the problem that’s causing your symptoms...”

“So see, you aren’t crazy!  (Not that you would be if the test hadn’t showed anything.  I would have believed you anyway.)”

“Oh, and here is a pill that will fix the problem...”

“...With no side effects.”

Yep, this really happened last week!