Rare Disease

When my daughter was first (mis)diagnosed with a rare disease in 2013, not only was I utterly devastated by the news that she had a progressive disease, but I was also shocked beyond reason by the realization that such a disease even existed in the first place. That moment was reality-altering. In fact, I remember very little from that day, except [...]

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Glenda McCoy

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Rare Disease

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How My Daughter's Rare Disease Opened My Eyes

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Nox Cinis Caelum WonderPup

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@puppy_nox

hippain 25m

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G'morning

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

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

52 Small Things 4h

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When was the last time you felt stuck? What did it feel like?

No matter what part of your life is affected, feeling stuck can be tough, especially when you don't know what's coming next or how to move forward. Learning how to identify when and why you're feeling stuck can be the first step to overcoming it.

Let's share our own experiences today. When was the last time you felt stuck? What emotions came up? How did you overcome it?

Mighty staffer @sparklywartanks felt stuck after realizing she had been putting too much time and energy into something that was draining her mental health. She’s learning that she doesn’t have to do everything for everyone and that it’s OK to set firmer boundaries while prioritizing her own needs.

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52 Small Things 2d

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Who or what inspires you to keep going?

Hi Mighties!

A new week means a new theme, and the topic for this week is 💫 inspiration 💫.

In its simplest definition, to inspire is to spark or create a feeling of confidence, motivation, or desire to do something. Inspiration can come from many different places, such as art, the environment, other people, books, and music, and can influence a myriad of ideas, both new and old.

Today, let's share who and what inspires us to keep moving forward.

Mighty staffer @sparklywartanks says that her family and passions inspire her to keep going.

What about you? 👀

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Nox Cinis Caelum WonderPup

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@puppy_nox

And just like that I'm pissed off

One of my friends messaged me. They ask a lot of questions, like what's SEL and what's nerve ablation and why don't you ask a friend for a ride to xyz...etc.
Today I explained that I don't have any friends in Michigan. And immediately she starts asking me very personal questions and I am not having a good time so I stepped away.
The stress from all the questions triggered a migraine. And not a mild one. And this isn't the first time I've gotten a migraine from talking to her. I should probably cut ties. I keep thinking that having big scary rare diseases is my burden to teach people about. But it's not.
SEL isn't even listed here.

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52 Small Things 5d

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What is something you want to accomplish before the end of the year?

We're over halfway through the year, but that doesn’t mean we've run out of time or opportunities to accomplish what we want. We can work toward, prioritize, change, or adjust different aspects of our lives as we see fit. We are Mighty after all! 💪⭐🏅

What is something you want to accomplish before the year has ended?

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52 Small Things 6d

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Describe your perfect day.

Mighties, wouldn’t it be great if we could each have just ONE perfect day? A day where everything just seems to fall into place and makes sense. A day where our health is being cooperative, our symptoms are low, and medical appointments are nonexistent. A day without responsibility to others, with the only objective being self-fulfilling joy.

What would a perfect day look like for you?

Let us know below! ⬇️

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Nox Cinis Caelum WonderPup

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@puppy_nox

Today's appointment went well... I apologize, this is very long.

My wife and I had back to back appointments with our PCP today.
She was just getting her yearly. I, on the other hand, had 4 important points of business and my yearly. I went first. The first thing I did was tell her that the SEL grew back. She's not familiar with SEL and there's really no reason she should be cuz it's extremely rare. I told her about how it's much more rare for it to grow back. I said I always wanted to be special but not like this. Then I showed her the big bump on top of my head and she said I definitely need to see derm so they can drain it. I asked her to tell her boss (my personal friend but I don't have a way to tell him about my health. He was 1st in his class with rare diseases) when she sees him tomorrow. Then I told her about how my scalp Seb derm is currently extremely painful and itchy and peeling. I showed her the bad spot on my right temple. She said it looks angry. Then I told her about my gut aches and I told her I'm drinking protein coffee which is making me have painful GI distress. She asked if the benefits outweigh the negative. I said yes. In the last month of drinking it I've lost 5lbs. It makes me so happy and keeps me full. And it's sugar free so it's not impacting my diabetes. She suggested I take lactaid and I told her I have been. Then she said it's time for a mammogram. She sent the order to the imaging office I use all the time. I got to call them tomorrow. I also gotta schedule with derm.
Before we went to the appointment, my wife asked if I was bringing my rollater and I said no I shouldn't need it cuz my hips feel fine. Guess who has 2 👍👍 thumbs and forgot about my lumbar. This guy right here.
When we got to the patient room I plopped my giganticus butticus up on the table and my back said "the hell-o you think you're doing? " So I laid on my side until the doctor came in. The pain was up to 7. When we got out of the appointment the pain was at 8. It was shooting down both of my legs. Which means the spinal epidural lipomatosis was flared up.
I need to call my neurosurgeon who did my surgery to see if he wants me in to talk about another surgery. I'll do that tomorrow. Not only did my SEL grow back, I've also got 2 more spots of stenosis. My body is a squeaky wheel.
After the appointment I was supposed to get labs drawn. I took inventory of how I was feeling. My mouth was dry and painful and I was extremely thirsty. I know those symptoms all too well. I was dehydrated. Which means if they *could* find a vein for blood, it'd come out like sludge through a glory hole. So I just sat in the waiting room when my wife had her labs drawn.
While I was waiting, my pain specialist nurse called me to schedule my lumbar nerve ablation. The soonest I could get in is October 2nd. So I said yeah.
Sorry so long.

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52 Small Things 1w

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If you created a vision board right now, what would you add to it?

Making a vision board can be a fun and creative way to map out what we want for ourselves and our future. What exactly is it? Vision boards can be digital (like Pinterest) or an old fashioned cork board, but it’s essentially a collage of words and images that reflect a person’s dreams and aspirations.

Of course, like goals, it’s totally OK if some of the things we put on our vision boards change over time; the key is to explore what it is we want, need, and desire and put it all together in one place. It can even be a nice, cathartic exercise to take our mind off things in the present!

Mighty staffer @sparklywartanks would add a small map of her city and pinpoint the places she wants to go by herself, with family, or with friends, as well as sprinkling in positive words to symbolize motivation, self-care reminders for herself to continue moving forward, and images to represent personal goals that she has.

If you were to create a vision board right now, what would you add to it?

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