young and living with chronic pain

we're going to make it through. just a girl with aches and pains to spare. mo or momo. she/her. 28. (started this blog at 17). this blog was created to share the experiences of young people living with chronic pain. personal ig: youngchronicpain (icon credit: @trinecomics)

[youngchronicpain]

I got married on November 1st to my favorite person. I wore a white dress and a butterfly and flower corset. My hair was loose, flowers stuck haphazardly last minute in my curls by my maid of honor. I got to live my childhood dream of wearing a cloak down the aisle. It was gold and shimmered beautifully in the morning light. I was barefoot.

We sat across from each other on ornate flower covered chairs that we found at goodwill for 13 dollars a piece. I wanted the seat to be covered in live moss. (I had a vision, okay?) We sat in front of the wedding arch that my dad built, and my brother, who was officiating. I used my powerchair the majority of the day, but I wanted us to be in matching chairs for the ceremony.

Our cake was made by my partner's mom. Three beautiful tiers with giant zinnias and marigolds adorning it. And a home grown Mexican sunflower from our yard sitting royally on top.

We celebrated with food from our favorite Chinese restaurant in the same place we had the ceremony, outside, at a local state park that had sprawling forests, a prairie, and a large lake. Meaning we spent very little on a very beautiful venue we can visit anytime we want.

Plus, there were accessible concrete pathways and a wheelchair (even my full size powerchair could fit) accessible bathroom right there!

Our biggest expenses were food, drinks, and flowers.

My favorite parts: hearing my partner's vows (he wrote me a poem!!!!), the bees having a field day with the flowers we brought in, everyone loving the food, including a polaroid camera next to our guest book so each entry has a photo of the person writing in the book, and my dress and cloak almost being ripped off as we left by my powerchair because I wasn't paying attention. (While managing to still stay completely white no matter how many snags I had).

It was beautiful. It was perfect. It was everything I could have wanted it to be. The day hurt. Of course, it still hurt. But I'm in a really good place with pain management right now so it was as managed as possible between meds and my scs.

My pain did not ruin my day! ❤️

I know it has been a long while since I've posted here. Life got pretty hard there for a while. I had to acclimate to losing more mobility all over again because of how much pain I was in for so many months after our big trip. But I'm finally in a better place.

And now...we prepare for our honeymoon in Japan!

[youngchronicpain]

My partner and I are on day 8 of a trip/road trip and he is packing all of our stuff into the car while I lay on the motel bed and he keeps asking me if I'm okay and if we have been going too much

And I'm just like???? How can you tell

And he said..."you're not talking"

Lmaoooo okay fair

[youngchronicpain]

I'm getting my first salon haircut in over six years today as a trial for the haircut I want for my wedding and aaaaahhjhh

getting my hair washed and cut at a salon takes a lot of time and energy/causes quite a bit of pain usually so I'm pretty anxious. but im also excited to get a proper haircut. I've just been grabbing the craft scissors and chop chop chopping all this time. my hair is curly so you can't tell as much. but I feel like the stylist is going to be horrified at the state of things 😅

[youngchronicpain]

the pain in my limbs is making me wish I could detach them like a barbie doll. POP goes the leg. Begone for a spell

[youngchronicpain]

I had an eye exam for the first time as an adult today (at 29) and apparently I am near sighted and need glasses lmaooo

I'm really grateful that my partner pushed me to finally go to the doctor. I can't wait to be able to read subtitles on the TV and signs again with ease.

I was so anxious because of how often doctors have dismissed my body failing me. But this was so easy. Eyes aren't working well? Vision aid is needed. With an aid, I see better. Testing done to see what kind of aid will help the best. Glasses prescribed for full-time use. Easy peasy.

[youngchronicpain]

my body hurts but I'm making homemade pizza for dinner!!!! which will make it hurt more but later tonight I will get to snuggle in bed with my partner while we listen to a new episode of one of our favorite podcasts and play video games!!! and honestly, that's what it is all about, ya know?

[youngchronicpain]

doctors: you're going to be in pain forever!!!! you'll never not be in pain so dont you dare expect that!!! but really how is your mental health? dont answer this question in the wrong way or ill have to Make Some Calls. I'm just trying to Help You Get Better. but also you'll never Really be better. This new med should maybe help but if it makes you feel funny stop immediately. see you in 3 months!

[youngchronicpain]

my body is made of nothing more than inflammation and arthritis and I wish I could put my brain in pause mode until I'm out of this flare

[youngchronicpain]

I'm in so much pain this week but I keep trying to do physical things because it is the only thing that can distract me from the pain.

Which in turn, makes my pain worse.

But my brain is unbearable when I'm laying in bed. I just want to be doing something. And playing games, or crocheting, or anything I can do from bed doesn't seem interesting to my brain right now.

I want to be in my garden. I want to be baking. Or cooking. Or cleaning my messy environment.

But those are the things that put me in this much pain.

I just hate my brain and body right now. I fucking hate intense flares like this.

[youngchronicpain]

I've been making milk kefir with grains I bought online and it has been such a fun journey. My grains have quadrupled in size since I first got them! I haven't seen any big changes in my health but I enjoy using it in smoothies and just the process of making it and watching it ferment.

I had a lot of fun making yogurt, but honestly, making kefir is so much easier. Plus, it is supposed to be better for you? And it has a much smaller amount of lactose.

Like gardening, I enjoy fermentation projects because I get to check in on them and watch their progress. They give my brain a little happy boost on bad pain days. And at the end, there's (hopefully) a tasty product!

[youngchronicpain]

My partner gave me these custom tcg sleeves for my birthday today, and I love them so much. I laughed out loud when I opened them. He took this picture of me in NYC last year in Central Park.

I am now 29. I am getting married this year. Life is weird and lovely. I still had a spiral yesterday because birthday and pain. But I bought a lot of plants at a local nursery and my partner made me biscuits and gravy for dinner. We are going to go thrift shopping and get my birthday freebies at various restaurants today. Life is good. ❤️

[youngchronicpain]

Hey friends, I'm working on a project on how to make dental offices/visits more accessible to disabled people.

In your experience, what is something that is lacking in these spaces? What can be improved upon? Because I feel there are some glaringly obvious accessibility issues that need to be highlighted, but I'm sure I'm missing some by just thinking about my own experiences.

Thank you!

[youngchronicpain]

Thank you to everyone who has given input. There are definitely things that were mentioned that I never would have thought about, and I appreciate your perspective!

[wizardshark]

hi yeah i know ive been on this medication for 8 years but i need-- yeah. yeah 3 more months please. I'll call you in 3 months to beg for 3 more months, thanks. Bye. Love you.

[youngchronicpain]

Hey friends, I'm working on a project on how to make dental offices/visits more accessible to disabled people.

In your experience, what is something that is lacking in these spaces? What can be improved upon? Because I feel there are some glaringly obvious accessibility issues that need to be highlighted, but I'm sure I'm missing some by just thinking about my own experiences.

Thank you!

[youngchronicpain]

Sometimes, with chronic pain, you have to make new traditions that better fit your body.

I'm someone who has always really enjoyed decorating a tree for Christmas. But honestly, as the years have gone by and my pain has gotten worse, it has become more and more difficult for me to participate in my family's tradition.

But the cool thing about being an adult is that I can create new traditions that don't hurt me quite as bad!

A year into my partner and I being together I saw a sale on gingerbread house kits. They were 50% off and under ten dollars for a pretty big house with all the icing and decorations.

He made us ramen, and we built and decorated our house while we watched a movie. We had so much fun decorating and working together on our little creation. And thus! A new tradition was born.

Now, every year, I keep an eye out for gingerbread houses to go on sale, and I snag one for us. I look forward to it so much. And the best part is? We can do it from our bed on my little "over-the-lap" desk. It reduces my pain so much. (And while it can be a little messy if you put down a throw blanket, you can just shake all the sprinkles that rain down into the trash when you're done.)

This year, we did a competition to see who could make the best creature with extra candy and desserts from around the house! I won. And we had such a fantastic time together.

It is such a magical experience to start traditions that actually take my disability into account from the get-go instead of trying to fit into already established traditions that I really struggle with.

So, if you are young and disheartened by the holidays, have hope! One day you will be able to shape your own traditions. And they can be whatever you want them to be.

[wholeheartedsuggestions]

your email found me unwell

[youngchronicpain]

Trying to get back to meal prepping and all I can say is: my body hurts.