For starters, I’ve been having issues with my heart rate for over a year now. In the past, I’ve had problems with pericardial effusion and pleurisy a few times. My heart has almost failed twice within the past two years. I can’t remember exactly when, but I’ll say around…April of 2021? Is when my heart rate issues became worse. My resting heart rate is 76 - 88; usually, this is when I’m lying down or sitting for more than 20 minutes. When I sit up completely, my heart rate will go to 110 - 125 or 136. When I stand, it goes to the 140s or 160s. After showering, my heart rate hits 180 - 191. So far, the highest heart rate I’ve had is 198. My symptoms for the past few months has been stomach pain, brain fog, nausea, vomiting, headaches/migraines, dizziness, lightheadedness, random blurry vision that’ll last for up to 10 - 20 minutes, chest pain, shortness of breath, skin sensitivity, painful red patches on arms, leg swelling, painful/uncomfortable bloating, weakness, fatigue, a few fainting spells, and much more but I can’t remember them all at the moment. My current diagnoses are Lupus (SLE), Rheumatoid Arthritis, TMJ, and Raynaud’s syndrome.
Is anyone going through this or has gone through this? If so, what tests were run or recommended? Did you get a diagnosis?
I really need to know. I’ve been dealing with this for so long now. It’s interfering with my day-to-day life and daily activities. I can’t even talk or laugh without my heart rate going up to 126. The lightheadedness and dizzy spells are happening daily, and I’m afraid that I’ll pass out. The stomach issues I’ve been having have made it difficult and painful to eat and drink. It feels like my stomach is on fire 24/7 and being ripped open every once in a while. My doctors think I could have another possible autoimmune disease, either fibromyalgia or a connective tissue disorder (I dislocate almost daily). I’m not trying to self-diagnose myself, but I’ve been wondering if POTS could be another possible diagnosis? From what I’ve been able to research, the symptoms I’ve been experiencing are pretty similar, but I know Lupus can be the cause behind a lot as well. I also know that Lupus can be the cause of POTS. I just want to find out as much as I can to bring some things up to my doctors since they’re just as confused as I am, haha. I’m tired of dealing with this and need relief.
What makes you vulnerable makes you beautiful…there’s a word for it: authentic
Vulnerability is a scary thing. We don’t want to look weak. We don’t want people to pity us or judge us. We know we can’t be perfect, but we don’t want to seem too imperfect.So often, we think our imperfections are our flaws. However, we shouldn’t confuse the two or make them interchangeable. Because our imperfections…
ARG. My joints hurt SO BAD today, and I don’t know why. I’ve been eating low histamine. I have gotten lots of sleep. I haven’t been overly active. My work stress is way down.
The only two things I can figure are that I’m on my period and there’s a low pressure weather system coming in. Neither of which I can stop. But I really hope the pain goes away soon… it’s been so nice to feel relatively able-bodied!
I had a much better pain day today! I think it was the low pressure system.
My right ankle is still bad, but I’m pretty sure I have Achilles tendonitis in that ankle so… yeah. Bracing it during the day and R.I.C.E. at night
I actually found some research the other day stating that the time around periods is when the estrogen in your body is lowest and due to estrogen being a hormone that among other things increases pain tolerance, your pain sensitivity is heightened. As a result, in patients with arthritis, fibromyalgia and other chronic pain conditions who have periods it has been noted that during their period is often when the pain is worst.
Or it was the low pressure system. Hope you’re feeling a bit better!
If anyone needs a good Hulu show to watch during all the time inside, i suggest the Zoo!! Its really soothing and feels like going to a beautiful zoo and seeing all the animals.
As much as i realize it is unreasonable to think that tests wont show anything if my symptoms arent showing, it’s very frustrating that my hands are numb TODAY and not YESTERDAY when i had the EMG.
I genuinely enjoy going to a new dentist and seeing the horrified and dismayed look on their faces when they discover im missing 5 teeth cause GENETICS.
Me, yelling at the robot vacuum: god damn it! who made you, why are you so freakishly strong? What the fuck!
Oppy, turning the corner having ripped the fucking wall vent off the wall in the dining room and merrily trundling on her way:
A criminal.
whaaaaaat? oppy is shredded! Our Dop wouldn’t be able to do that afaik and he’s same brand
I maintain there is something wrong with her because it genuinely seems too powerful for something designed to vacuum a floor. Nothing it safe, the other day she pushed the armchair out of the corner and in front of the TV. It’s like living with a mechanical poltergeist.
My WallE (same type as Oppy) constantly just knocks things out of the way. Benches? Check. Boxes? Check. Dogs? Check.
a black woman named zoe amira posted a video on youtube. this video is an hour long and filled with art and music from black creators. it has a ton of ads, and in result will rack up a ton of revenue. 100% of the ad revenue from the video will be dispersed between various blm organizations, including bail-out funds for protesters. it will be split between the following, dependent on necessity
brooklyn bail fund
minnesota freedom fund
atlanta action network
columbus freedom fund
louisville community bail fund
chicago bond
black visions collective
richmond community bail fund
the bail project inc
nw com bail fund
philadelphia bail fund
the korchhinski-parquet family gofundme
george floyd’s family gofundme
blacklivesmatter.com
reclaim the block
aclu
turn off your adblocker and put the video on repeat. do not skip ads. let it play on loop whether you’re listening or not. mute the tab if you need to focus elsewhere. but let. it. play.
youtube will donate to blm for you.
please, please reblog. for people who don’t have money to spare, this is incredibly important information to have.
Re-blogging with some added information from the comment section of the video.
C.D. ai-0139 commmented on the video
hey everyone wants to 5/+/r/3/a/m this, you can copy from how k-pop fans do it; once you finished the entire thing, proceed to watch any 3 to 5 videos (literally any length of the video will do, plus randomize the number of vids you watch AND the videos themselves they will count as spam if you watch the same 3-5 videos) after this. once you’ve done that, watch this again in the highest quality. rinse and repeat!
and later defined streaming as
watching videos or listening to music in social media platforms that provide audio/audio-visual content! you can naturally just consume the media on the highest quality and move on or you could help increase ad revenue/view count by watching/listen to this over and over again while simulating a “natural” pattern of watching
The current worry is that if you just put in on repeat without adding buffer videos in between Youtube might not count the views/ad revenue.
However Gee Smith-East made a list to mimic natural viewing pattern!!!
If you’re worried that youtube isn’t counting your views, try the playlist to mimic a “natural” watching pattern or add some buffer videos in between a couple plays.
@so-over-ableism I think our collective followers might find this a doable way to do more tangible help.
So, I think I’m back. As it turns out, the emotional support that this community can provide is really valuable and I kind of need it.
Why did I leave? Well, grad school is a lot of work. And being an adult is a lot of work. Between those two facts and my decision not to use my computer within two hours of bedtime, I just stopped logging in.
And why am I back? No, neither grad school nor adult life has gotten any easier. But I have been seeing a therapist for a few months now, and I have come to realize the extremely high value of social support from other people with chronic illnesses and/or disabilities.
That realization came out of discussing shame with my therapist and talking in particular about the experience of getting my first mobility aid. You could probably reconstruct most of that story from my archives here, but I want to tell that story in its entirety. Because I think it is powerful.
Let’s set the scene. I’m 21 years old and in the spring of my junior year at University. I’ve had chronic pain of some sort or another since the age of 17. The pain first appeared in my wrists, slowly spread throughout my arms and shoulders, then to my neck and back. At this point (age 21) I have had some pain in my feet, ankles, and knees for honestly about a year, but I am in denial about this. Even as I start taking the campus shuttle more and more instead of walking to class, I resist admitting that the pain has in fact spread to my lower body.
I’m considering what to do for the summer, and, because of some discussion that had been had about more intense medical treatment over the summer (which ultimately didn’t happen) I have not applied for summer programs like REUs or internships. My research mentor (a professor in the math department) is happy to have me continue working with him over the summer on ongoing projects, and I have a lease for an apartment near campus. So, I make the decision to stay on campus for the summer and work on research.
So, when I am contacted by a representative from my high school to say that they are running an outreach program for high schoolers on campus for a week during the summer and are looking for RAs to supervise the students, I’m excited. I get even more excited about the opportunity when I learn that one of my good friends from high school will be the other female RA.
And then I pause. One of the requirements of the job is to escort the students to various classes and activities around campus. This means walking. And walking has become painful.
The emotional side of my brain, still not wanting to admit that my pain has in fact spread and that I might really benefit from a mobility aid, comes to the conclusion that, well, I guess I just won’t take the job then. It is at this point that the logical side of my brain interjects: “Really, you’re going to not take this job because it involves walking? When our society actually has a whole range of tools that help people with the task of walking? And you haven’t even looked at those tools?” And so the hunt for a mobility aid began.
But the search was not without inner strife. I felt what I now recognize as deep shame when even considering using any type of mobility aid. Society had conditioned me to believe that these tools were reserved for older people and people whose doctors told them they needed one. I thought that using a mobility aid was somehow cheating or taking something that I did not deserve.
And this, as you may well have guessed, is where tumblr comes in. In particular, the spoonie community on tumblr. At this point, I had been posting and reading posts and discussions from this community for about a year. I had seen and read enough to know that lots of young people with chronic illnesses (including without a diagnosis) used canes and other mobility aids. I don’t recall ever asking “is it okay for me to use a cane?” But I did read lots of responses given to people who did ask variants of that question. The community treated these people with kindness and compassion and reassured them that their needs, whatever they were, were legitimate.
You spoke about how the choice to use a mobility aid belongs to no one but the person using it. You affirmed that we all should make choices that help us live our best lives, minimizing pain, maximizing function and happiness. And, perhaps most importantly, you shared your own stories about the shame, embarrassment, or awkwardness that came with getting your first mobility aid. You showed me, through your stories, that I am not alone. You showed me that my experiences, my emotions, were not an aberration but the norm in the relevant community.
I won’t pretend that that made it easy. It still required a leap of faith and a choice to defy shame. I still hesitated to add my first collapsible cane to my Amazon shopping cart. I still struggled to discuss my new walking poles with my parents. But I did it. And then I hesitated to go out in public, to show up in my classes with a cane or to walk down the street with my poles. But I did those things too. And it did get easier.
And I took that job. And I walked those students around campus with a pair of walking sticks decorated with patterned duct tape and beaded tassels.
Since then, I have continued exploring the world of mobility aids to meet my varying needs at different times and in different contexts. I now own one collapsible cane, two non-collapsible offset canes, a pair of walking/trekking poles, a rolling walker, a pair of Smart Crutches, and a Walk Aid scooter. And I use them all, in different situations and according to my varying needs.
I won’t pretend that my shame is totally gone. There are still times when I feel ashamed of my mobility aids or awkward about using them in public. There are still times when I struggle to assert my needs as a disabled person. In short, I still have work to do. But I’ve come a long way, and this community is a major reason why I have been able to do that. Thank you.
Hey lovelies! I recently joined Instagram, and I’d love to get more connected with fellow spoonies! My Instagram is a little more “personal” than this Tumblr page, by that I mean it’ll be a little bit of chronic illness awareness related posts and encouragement, plus things like selfies (obviously) an occasional picture of my cat or pony. Still all positive/upbeat things, like this page attempts to be, just with a more personal touch :) and I’m still learning how to use Instagram, so please be patient with me
If this is something you’d be interested in checking out, feel free to follow me! And I’ll follow back! My Instagram name is Fiyera_Rae.
