chronic 🍈 melon

Reminder to follow me at twitch.tv/melon_ayo and join the Discord, at the link in my bio!

If you put your pronouns in your email signature to seem like an ally, please pay attention to the pronouns in other people’s signatures and refer to them accordingly.

Please spell their names right. It baffles me the amount of blindness people have through email… like it’s spelled out right there for you. Copy and paste.

People like to leave extra letters off my name and call me she when they’ve never even met me. How can you just boldly assume the gender of a person you only correspond with through the written word??

Signed,

I got in to see the cardiologist, and he referred me to get a tilt table test, echocardiogram, and to wear a monitor for two weeks. I have done the first two.

During the tilt table, I experienced a syncope episode at the very end of the test. They called me and let me know I had Vasovagal Syncope, a type of dysautonomia.

My echo looked normal according to the sonographer, so I’m grateful that there’s nothing wrong with my heart! My EKGs have all been normal too.

I have called the office three times, and every single time I have been sent to voicemail. I have not received a call back. I’m trying to get this freakin monitor, but they are not being helpful! I really need them to move it along so I can get the rest of this over with.

I see my primary care next week, and I’m going to pony up and ask her for a referral to a physical therapist to be evaluated for a wheelchair. It’ll be a lot insurance wise, but I feel that with my cases for fibromyalgia and vasovagal syncope, I will be able to get it taken care of. I simply can’t do the things I used to do anymore, in my home or outside of it.

I plan on asking for a manual wheelchair with power assist. Wish me luck!

My prior authorization hold has allegedly been lifted for Nurtec, so hopefully I can get my migraines under control. I’m not sure if the pharmacy will be able to fill it yet, but we’ll see.

Celebrex is okay. I am still in daily pain. I’m also just completely fatigued. I didn’t get out of bed until 7:30 pm today… my body simply does not feel rested no matter how much I sleep. And I am sleeping, I’m not just laying in bed. What I wouldn’t give to feel wide awake…

I will have to repeat my thyroid levels soon. I want to ask for a repeat ANA and an A1C to check for lupus and insulin resistance. I would like to check my cortisol too, but that might take a while. It’s really hard to read consistently.

I’m shying away from Ehlers Danlos. I don’t think I meet the criteria, but I do know that I’m hypermobile. It’s just hard to tell if that’s what’s causing my pain or if it’s something else (like lupus).

We have raised $220 so far! But we are so far from our goal. If you could reblog this, it would mean the world. Thank you.

Dishwashers aren’t lazy, they’re efficient

Washing machines and dryers aren’t lazy, they’re efficient

Driving cars isn’t lazy, it’s efficient

Sending an email isn’t lazy, it’s efficient

Showers aren’t lazy, they’re efficient

Amazon isn’t lazy, it’s efficient

Doordash isn’t lazy, it’s efficient

Microwaves aren’t lazy, they’re efficient

We’re so used to convenience that we’ve forgotten our world is designed for it, and we don’t need to get caught up in productivity politics because adaptation is okay! If someone has an automatic can opener or a chair lift or they get their groceries delivered, that doesn’t make them less of a person. It makes them more, it makes them work smarter not harder.

NEWS ARTICLES ARE NOT MEDICAL RESEARCH

MEDICAL JOURNALS ARE MEDICAL RESEARCH

IF IT’S NOT A STUDY, DON’T GIVE IT TO ME AS FACT

IF IT’S NOT A TRIAL GO AWAY

I swear the next time I ask someone to provide me with genuine medical information to support a claim and they give me a New York Times article, I’m gonna blow and not in a fun way

GROWING PAINS ARE NOT A THING.

Your body does not hurt to GROW.

That is a myth that we tell children because they keep wining about pain. “It’s okay, that’s your body growing. Just go back to sleep.” IT DOESN’T HURT TO GROW.

If you’re still not with me. Generally, when we refer to children as having “growing pains” it’s usually ages 3-12. And what we’re really talking about is strain on the muscles and bones after overuse.

Children are incredibly active! And while growing pains are a great way to excuse that, why are we afraid to say they just played too hard that day? They’re dealing with muscle fatigue. Soreness. Their bodies are new, so it takes a while to adjust to using them so much.

If you are over 12 years old (and you better be, on this app) then you do not experience “growing pains.” You experience pain.

Not my food habits.

Not my hygiene.

Not my productivity.

Not the clothes I wear.

Not my outlook on life.

Not my goals.

Not my medications.

Not my weight.

Not your body!

You don’t get to decide if I have a moral failing because you think you’re better than me and you could handle it better. Please, try to experience one day of pain like mine. Try to experience one week.

When you’re faced with the choice of not eating and ordering fast food, it’s an easy choice. You choose to eat.

When you’re faced with passing out or wiping yourself down with baby wipes, it’s an easy choice. You choose to be safe.

I am sick of the lectures about what’s good for me, the dangers of seed oils, how medication is propaganda from big pharma, how I’m just lazy and I can take a damn shower.

There’s giveaways. There’s funny videos. There’s me calling my mom on stream. What more could you ask for? AND 50 subs or equivalent will unlock a squishmallow giveaway on Instagram! Woohoo!

There will be no timer, we will be going from midnight April 1st until 11:59 April 30th. I will be streaming every single day, including rest days so don’t worry 💛

I can’t wait to share this with you all! If you want to support me right now, you can like, save, comment, and share this post to boost the audience! Make sure you’re following me over on twitch.tv/melon_ayo. And consider joining my Discord, which you’ll need to do to qualify for the last giveaway!

That’s all for now, Melon Patch. I’ll see you soon…

I never know what to expect when I go to get a procedure done or get checked out in the ER. I have had uncomfortable to traumatic experiences especially with lab work and iv placement.

People don’t understand that while I might seem like a regular adult who can handle myself just fine, I also have fibromyalgia which makes everything so much more painful. You don’t have to squeeze my arm to death to palpate a vein. I can feel my veins just fine with light pressure. It’s not hard.

The lab nurse today did something no one has ever done when taking my labs. She pulled my t-shirt sleeve down so when she tied the band around my arm, it didn’t pull my skin. I almost cried. I’ve never been so grateful to a nurse before, and what she did was so simple.

My radiology intake was okay, but the rad tech was seriously amazing. She knew exactly what she was doing and was patient with me, acknowledging my pain and making notes in my chart about it. I was blessed today.

And not every day is like that. And I just need nurses to know, because usually it is unfortunately in my case, that it doesn’t hurt to be gentle or take your time. And it’s okay to joke and smile with the patient. We need that.

I know how much nurses are mistreated, including by patients. But I am the most grateful and graceful patient in all cases, even in cases when I’m being tortured. And dirty looks and sarcastic remarks really don’t help my health journey.

Folks, I don’t try to sell ANYTHING to anybody, but this is for the chronically ill folks with limited energy who are trying their best to pace themselves and failing.

I have Hashimoto’s, ME/CFS, fibromyalgia, and chronic migraine. I struggle daily to limit the use of my energy and not overextend myself. I was running out of options and constantly running myself into the ground, having a really bad day and then crashing hard for 3 days or more.

If you’re finding that you struggle with this too, and you think tracking your heart rate and daily symptom severity could help, I highly recommend Visible.

It uses a Polar armband to continuously track your heart rate, and the 2.0 band now has a 5 day battery life, making it capable of sleep tracking. I currently have the 1.0 version, but I’m hoping to switch soon.

If heart rate variability, automatic “spoon tracking” (the app calls them pace points) and real-time medical data you can download and share with your healthcare team seem like good tools for you, then click on the link to explore!

Transparency: if you decide to purchase a membership, please know I receive $20 off the 2.0 armband, and so do you. I don’t receive any money, just a discount on the new band. 💛

And yes, this membership is not financially feasible for a lot of disabled people, especially those on social security benefits. They are working on getting the product to be available through insurance or FSA, but to do that, they need folks to support their research. That’s why I’m enrolled in clinical studies through the app.