Rare Disease

I love comic books and larping and MTG and fantasy books about dystopian worlds unfit for the style of procreation we know of in our world. I also really love drawing my character when I play table top games. My favorite game is Pugmire. I'm a major geek.
I also love brunch, mimosas, window shopping, Broadway musicals, and canapes and tapas and basically I love finger food. I'm a big gay boy. Yaaaassss
I have discovered that I enjoy country rock music, dirt roads, fishing for bullfrogs, and barnyard photo shoots. I don't know what that makes me.
My wife doesn't want noise while she's working but she wants me near so I speak her love language with my Bluetooth headphones on and I'm listening to music and scrolling through Facebook like a sort of deaf man at a metal concert trying to read the ASL interpreter but I think she speaks French. It's called parallel play. I am not autistic but I'd be a lousy partner if I didn't want to meet her halfway.
Oh and have I mentioned how very medically special I am? I've got a rare disease and an even more rare resurgence after I had surgery to remove the offending lump. Fun times.
I like coffee. And coffee shops. And open mic events where I can read my poetry. And Johnny Cash and Frank Sinatra and the rat pack. I'm fancy.
I love BBQ brisket and hushpuppers and fried okra and boiled or fried cabbage. I've got a Southern heart.
I am part of the alternative adult sexuality community known as leather puppies. I love dressing up like a great big fluffy puppy who strives to make my owner happy and I love keeping her safe.
I'm Ace. It's been really difficult for me because I'm in a very stable happy relationship with my dearest wifey and I'm always afraid I'm never gonna be able to have physical intimacy again cuz my mind is a bully. Every time I get close my panic attack kicks in and I am useless until my Ace hardware starts functioning again. I'm broken but loved and I love with my whole butt. I'd say heart but my butt is bigger. And she likes my great big glutious derriereacus.
I'm a lover of nature but I don't hump trees. Without consent.
I have a lot of trinkets baubles and thingamajigs. So basically I'm either a witch or a raven. If you give me coffee I will give you something shiny.
So yeah. Totally a mutt.

Everyone suffers through some hardship in there lives.The hardest part for me# is finding people who share my experience through muscular dystrophy. I don't need validation I just want some more understanding even my friend of forty years insuated I was a drug addict because I take pain medication. I appreciate the Mighty because it's the only place that someone might listen. I can't expect people to understand my rare disease but I don't the negativity of unsupportive friends.#MentalHealth #ChronicPain #RareDisease #MuscularDystrophy #Fibromyalgia #Dystonia

Hi Mighty friends! ⭐

How is your body feeling today? Where are you experiencing pain or discomfort, and what has helped you find relief?

Check in with us in the comments below! 👇

Mighty staffer @sparklywartanks has been dealing with headaches for the past few weeks. It’s been disorienting, so she’s exploring different ways to find some relief.

#MightyMinute #CheckInWithMe #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth #Anxiety #Autism #Parenting #PTSD #ADHD #BorderlinePersonalityDisorder #BipolarDisorder #ObsessiveCompulsiveDisorder #EatingDisorders #Depression #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

When we interact or build relationships with others, we may not always know the impact or influence we have on them, but this doesn’t mean we're not having any impact at all! From our personalities, encouraging words and actions, and even our skills and talents, we impact people in different ways.

What impact do you wish to have on others?

Share in the comments below. ⬇️

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

Let's share our greatest accomplishments today, shall we Mighties!? Think about the moments where you look back and say, "I really did that!" These can be times when you overcame a challenge, persevered, got a degree, achieved a health goal, decided to do something that benefited you, or got out of your comfort zone.

Mighty staffer @sparklywartanks accomplishments are when she graduated from college with honors, when she hosted her first event, and when she began to volunteer her time to talk with grade school students about the importance of mental health.

#52SmallThings #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression
#Autism #Parenting #PTSD #BorderlinePersonalityDisorder #BipolarDisorder #Fibromyalgia #Lupus #MultipleSclerosis #Migraine #Spoonie

I woke up.
Clearly waking up each day is a trap.
The assassins are shitty.
But oh gosh
Whoever flipped the migraine switch...
And oh fuck
My right side from below my ribs and to my knee.
I am so glad I'm not leaving my apartment for any reason today. This pain is ridonkulous.
But I made a cold PSL this morning.
It's almost entirely pumpkin ingredients except for the creamer. The creamer was an ounce of creme brulee. It was all that was left in the bottle. It pairs lovely with pumpkin. But I think the next flavor I'm gonna get is butter pecan.
So I'm very excited cuz I ordered a bag of the new flavor of Javvy and it's coming in a few days. It's toffee nut flavor. I ordered 3 bags. The reviews on the new flavor is phenomenal.
It's been 2 weeks since I last had Javvy and I'm just miserable. The pumpkin pie flavor protein powder is good but it's half of the drink ingredients I need. I'm trying to make a chocolate hazelnut pumpkin latte. It's the best coffee I've ever had.
I'm hunting for affordable chocolate hazelnut flavor instant coffee. Or just hazelnut. I can add either chocolate syrup or hot chocolate mix.
I need a new french press. I had wanted to share my favorite tea with Pauley last night. But we currently can't locate the unopened bag. I'm sure we'll find it.
My favorite tea is actually an autumn flavor that I discovered about 8 years ago. It's called psychocandy. It's roasted pumpkin, caramel, and rooibos. Technically it's not a true tea. It's a tisane. Most of the tea I drink are tisanes. They're herbal, fruity, bright and vibrant. But psychocandy is deep and sweet and delicious. I prefer sweetening it with maple sugar.
My right hip just popped for the 5th time today. It's kinda squishy.
I rescheduled my appointment for having the 2 bumps on my head lanced and drained. Mostly because it's not even remotely squishy. It's a hard bump and it's growing. I saw my doctor a week ago. She asked me what I need help with and I pointed it out to her and said "I'm pretty sure this is a Pilar cyst." She immediately started to Google "Pilar cyst identification". Sigh.
Then I told her about the regrowth of the SEL. She had no idea what it was. I tried to explain in very simple terms. I told her to talk to her boss and tell him "Nox's SEL grew back" cuz he loves rare diseases.
My lumbar is screaming and my right SI joint is pulsing. I'm gonna eat half of a pineapple gummy. It's gonna make my pain go away but I won't get a buzz. I think they taste like pickles.
Here's hoping for the best.
#hippain #FemoralAcetabularImpingement #spinalepidurallipomatosis