Pots - Blog Posts
good luck with a second cardiologist appointment. I have only done the nasa lean test but got a diagnosis of pots through it. the instructions tell you to avoid excess salt and water 12-24 hours beforehand.
don't do this but i will also avoid taking painkillers before going to a doctor so that i will be crabby and exhausted and sore because i look fine when i'm coping
Its weird I made the same post about purposely making my symptoms worse on Reddit and it got taken down. You're not really supposed to talk about that. Its understandable but idk how else to get my doctors to take me seriously. And thank you! I hope it goes well too apparently they're a really good doctor
WORK IN PROGRESS
Represents my chest pain and rapid heart rate
title-: Heart Palpitations
If my doctors aren’t gonna take me seriously I’m going to make them
I went to a cardiologist, and he didn’t take me seriously at all. I got an off vibe from him. I asked the nurses, the receptionist, and my primary care doctor for a tilt table test. My cardiologist said no to getting me a TTT, all because I got better with water and salt intake (almost as if I have POTS???)
After bawling my eyes out m called a different cardiologist and hopefully they’ll actually listen to me. I just want a diagnosis so I can move on. I feel crazy.
My plan is to purposely decrease my salt and water intake so they take me seriously when I finally get a tilt table test. I’m ready to take drastic measures to be taken seriously
Call me a gymnast cause I am jumping through hoops trying to get a diagnosis
Digital Detox Helping With Chronic Illness
I did what I like to call a "digital detox" by limiting 90% of the apps I could use on my phone, especially social media. I do this because I find so much negativity in the community. Trust me when I say I know being chronically is hard. But there is no reason any of us need a 24/7 reminder of it.
I also find it difficult when I'm stuck at home for a good majority of my days, with no work, it's hard to keep myseld entertained all day. I end up relying on my phone and I get incredibly sad in the process.
As some of you may know if you watch my YouTube, I was off social media for 7 months. I found it beneficial. While I'm ready to be back on social media, I needed a break
So I only used my phone to film my journey, listened, to music, and text two people. My time spent on my phone was half of what it usually was (really just using the camera app.)
Would you be interested in me uploading to my YouTube channel my journey of a digital detox while living with a chronic illness? Should I do this more often? Would you consider doing this?
UPDATE!
I had to reupload my video due to accidentally adding copy right music (´°̥̥̥̥̥̥̥̥ω°̥̥̥̥̥̥̥̥｀)
I was so exhausted and has zero spoons left. Tookna three hour trip to snooze land. Probably shouldn't have taken that long of a nap, but you know what? I DESERVED THE DAMN NAP!!!! I might still be tire, but I'm feeling refreshed of spoons today.
If you need to rest go do it. No need to feel guilty about it
New to pots? Need some advice on managing symptons? Stay posted for my new vid coming out May 13 at 6:00 Eastern Time
Signs you're getting better that are NOT symptomatic | Chronic Illness Addition
You're adapting: Instead of pushing yourself past your limits, you learn ways to make your life with chronic illness just a little easier. It could be sitting while you beush your teeth, or opting for a bath instead of s shower.
You stop telling yourseld you "aren't disabled enough:" Maybe you're an ambulatory wheel chair user or you don't always need a cane to walk around. Stop telling yourself that just because your chronic Illness differs from day to day, means you aren't disabled enough. Go buy that cane or walker and use it when you need to. You don't need anyone's permission. You don't need to prove anything to anyone
You've learned to ask for help: I know we all want to be independent and not rely on other people for help. But even able body people need help from time to time. Our body function differently, and it's okay to need extra help than the average person. You're not a burden.
You priorities your mental health: Mental health is extremely important especially when dealing with chronic illness. You may be grieving your old body or experiencing jealousy. This is all normal. Ways that have healped my mental health tremendously are making a gratitude list to remind me what I'm grateful for, creating a schedule, and minimizing the time on my phone.
Please feel free to add to the list
HAPPY CHRONIC ILLNESS NEWS
Im so excited to say that after two months of having days that were an absolute roller coaster, I finally had a good day. A true good one. I don't mean my usual days where there is a sprinkle of good in a scoop of bad ice cream.
I usually spend my days doom scrolling, bored, and napping.
But my therapist and I came up with a plan to write down everything I do. This way I can create a schedule. I filled my day with low effort activities and rested. I drew, colored, did my makeup, did a graditude list, meditated. I'm so happy to prove to myself I in fact CAN have good days despite my illness
I wish everyone a good day with lots of rest
I'm trying to create a more positive and content place for disabled and chronically ill people. I see so many negative posts about being chronically ill and they can really put me down. I wanna change that
I'd love to ask the question, what are you grateful for?
Now, I know this can be SO hard to answer especially when you're chronically ill. But I really want you to try and think of at least one thing. It could be something really small. Or even a list!
I'll go first: I'm grateful for my ability to create art, my mobility aids, and my chosen family.
YOUR TURN!
ROUGH DRAFT chronic illness and insomnia
You can't sleep lying on a nail bed. The spikes digging into you. If you lay properly, it distributes all your weight. One wrong move and you're in agonizing pain. You roll around all night, trying to get one minute of rest.
You wake up after trying to sleep for hours. They ask you why you're so tired. No one sees the spiked bed, only you.
I'm not at all saying people can't vent or complain about being disabled and chronically ill. I do it all the time. What we go through is beyond difficult
But I'm on my phone a lot cause I don't have the spoons for anything else. I'm always seeing posts about how horrible it is to be chronically ill. It's constant reminder. Its like picking at a wound never meant to heal in the first place. Sometimes I see more positive posts, but they are few and far between. I should make an effort to post some more positive content.
I feel so much better adding these to my drinks. May have more energy and can walk easier. But I feel better not amazing and cured. Why am I not cured? 🤨 I was told water and exercise is gonna cure me /sar
No but seriously I recommend these they’re great
Just had to pay a thousand dollars of medical debt…
I spent a third of my savings, I can’t get a job because of my disability. I haven’t gotten a diagnosis. And if i want a diagnosis I gotta keep fucking pay off medical debt. And no getting paid disability till I get a diagnosis. THE AMERICAN HEALTH CARE IS ABSOLUTELY FUCKED
People act like we CHOSE to be disabled. That we CHOSE to not be able to hold a job, or not be able to take care of ourselves.
All I gotta say at this point is
I am absolutely PISSED
I am homeless, disabled, and trying to find housing. I don't qualify since I don't have a I have no income. I asked my social worker about finding housing if my gf lives with me but she doesn't make enough. I asked about getting disability once I receive a proper diagnosis, and I got a MAYBE. Not to mention, I'm so appalled after learning how much disabled people earn in one month. The government wants you to be homeless when you're disabled, and then punsihes you for it.
Happy birthday to meee!!!!! Introducing my walker named Susie, throne on wheels
THANK YOU TO EVERYONE WHO DONATED TO MY GO FUND ME TO GET MY WALKER
I'm gonna faint from anxiety, but I DID IT!!! Made My First YouTube Video
From chronically offline to chronically ill
Psst… HEY
If you are also queer, disabled, and/or have chronic pain, and wanna see art and other content about it, then feel free to follow my youtube ;))
I've been making shorts, and hopefully filming a full video when I have the energy!
One of my videos (´ . .̫ . `)
Guys.. I was able to take a short walk and go up the stairs easier. I think I might be cured from chronic illness 🤭
Let’s make my girlfriend into, a beam of light. She has been a shiny ray of hope for me through these hard times. Chronically, ill and disabled she has left me taking care of me, loving me, no matter what.