Chronically Rebellious

Just a girl trying to live with EDS, POTS, gastroparesis, hashimoto’s, generalized anxiety disorder, and OCD. Posting relatable chronic illness stuff and venting about my life.

[chronicallyrebellious]

What Should I Write?

I’ve been thinking hard about how I want this blog to be. I know Tumblr is generally a platform that is not taken seriously and I think that is, in part, because it’s easy to discount blogs that are mainly just repeating things that other blogs are saying.

It is really important to me that what I write is taken seriously and that’s why I’ve let my Tumblr sort of die off on its own, trying to create a platform that I could stand on using Instagram and YouTube. The thing is, even with those other platforms, I still find myself wishing I had a place to put some of my less perfected trains of thought. YouTube consists of days and weeks before producing a video that is as clean cut as I can make it and Instagram, although less planning goes into my posts, is too condensed to say anything worth saying most of the time.

So for those interested I will be attempting to use this blog as a place to talk about things that I either am not comfortable discussing on my other platforms, or fleshing out and trying to figure out how I would put it in other forms. With this in mind, I’m down for discussing pretty much anything, even outside of disability. So if you’re prepared for some raw footage of my train of thought I hope you’ll join me in this journey of writing again. This will be my first attempt at writing again after years of not doing anything extensive. I’d really appreciate any questions, thoughts, comments, etc. that you have regarding my future post ideas.

I’m going to keep my ask open, by the way, so folks from Instagram and YouTube can use this as a place to anonymously ask me questions. I think that sort of thing can be very helpful for those with anxiety.

Thank you for continuing to follow me,

-CRebel

[chronicallyrebellious]

Now taking asks

Hey, everyone!

If you haven’t noticed, I’ve been pretty MIA from Tumblr recently. That’s because I’ve been putting a lot of effort into my YouTube channel and Instagram feed, just trying to get things up to par. I’ve recently started pursuing an (aspiring) career in disability activism as my life has shown me that the world definitely needs people with disabilities to speak up more and loudly. That unfortunately meant taking a step back from Tumblr for awhile and evaluating how I run my social media.

Before I go on, please hop on over to my YouTube and Instagram (@Rebellious_Story) pages, give me a follow if you’d like, I’d very much appreciate it, and let me know if you’re from Tumblr cause it would be cool to see! I post videos twice a week and try to post on Instagram daily. I’m mostly just trying to educate people about disability in general.

So with that in mind, I just wanted to let you all know that this Tumblr is going to be doing a major revamp. I want it to be all about educating people about disabilities and helping those who are newly diagnosed navigate the healthcare world. With that in mind, I’m going to try to reblog mainly education stuff, with some humor, which will be divided under the proper tags, to be announced.

Im also going to make this blog all about being able to ask me questions anonymously, in case you’d rather not do it with your accounts on my other social media platforms. So send in those asks, folks, I will answer anything except for overt hate.

Thank you so much for following this Tumblr account and I do hope you’ll stick with me through these changes as I am just hoping to my my blog more educational and helpful for those who need help, but don’t worry there will still be funny posts every time I get the chance!

-CRebel

[chronicallyrebellious]

1/2 ok this is gonna be a really weird ask but basically i get super light headed a lot to the point where i won’t be able to see or hear for 5-6 seconds when i stand up too fast and when that happens my head pounds like crazy and as my vision starts to return, i always feel like someone turned up the Reality Dial like 70% if that makes any sense at all. I don’t really know how to explain it other than “everything gets super real super fast” but not in a sad way just like.. oh i’m alive?

2/2 and it just came to my attention that i have no idea if other people experience this. and i know you have pots so i was wondering if you’ve ever felt like that before. it’s a really intense feeling!! i don’t know my body very well bc i’m 16 and you know chronic illnesses are pretty unpredictable. okay sorry for sending you two super long asks lmfao i hope you’re having a good day~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~^~Hello!Sorry it took so long to get to this ask. I’ve been MIA on Tumblr in general for the past few months working on some other projects.So, yeah, this sensation does sound a lot like what my doctor calls “pre-syncope.” This is essentially when you come close to fainting or blacking out but don’t actually fully faint. The thing about pre-syncope is that it can sometimes be more disorienting than actual syncope, because your brain never full shuts down and gets to reset. At least for me, I always feel more disoriented after pre-syncope.These kind of episodes can cause psychiatric symptoms, like the kind of “extreme self awareness” you describe, and I experience that same exact thing. It’s almost like you go into another dimension when things start to pass out, but then come back to reality and have to sort of adjust to it. I’m not sure if this is common, but I’ve told my doctors and they don’t seem very surprised. I also have anxiety and disassociate from that so experiencing syncopal episodes can cause me to disassociate, which is its own psychiatric issue in my case at least.I’d definitely ask your POTS doctor about this though cause they might be able to shed some light more on whether or not this is typical for something with POTS. I have a lot of other conditions going on, personally, so there’s more to my case anyways than just that condition and many of my symptoms over lap.I hope you find some answers! Remember to stand up slow, drink lots of fluids, increase salt, and take your meds to help prevent these symptoms! They can be pretty sucky and dangerous if you don’t treat them before they get bad.Lots of love, anon!-CRebel

[chronicallyrebellious]

Hey. I just found your blog today and I wanted to thank you. The disabled community on Tumblr is so vibrant and supportive it's amazing and something I wish I had access to when I was young. Stay strong! You have a beautiful heart and a wonderful mind. If you ever need to talk to anyone (and that goes for all you lovely people reading this as well) I'm always available and willing to listen and encourage. I work in healthcare and I've seen my patients go through struggles with drs. Stay strong!

This is such a sweat and heart warming message! Thank you for sharing and I’m glad my blog has been helpful in whatever small way! I really appreciate the time you took.I do love the disability community on Tumblr. It’s so unique and full of life, which is tough to find on other platforms. I’m glad you have found the same comfort that many of us have found on Tumblr. I hope it continues to help you!-CRebel

[chronicallyrebellious]

Anything to help with my tinnitus?

It depends on what’s causing your tinnitus! All of mine is EDS related, essentially from my jaw dislocating multiple times. So because of that it helps to avoid chewy foods, biting down on things, talking with an open mouth, all that fun stuff. Sometimes NSAIDs like Advil can also help.I’ve heard that putting cotton balls or earplugs in can sometimes help, but I’d maybe talk to a doctor about that because if your problem is caused by something like chronic ear infections that would definitely be a dangerous habit to pick up. In addition, you should probably just check with your doctors before doing too much about this, just to make sure you’re not hurting anything because a lot of things can cause this symptom and they all require different treatment.But back to suggestions!Something I do sometimes when I have an infection is put something warm and slightly moist on my ears. This helps but you can burn yourself easily so you have to be super careful and make sure your using a device that is intended to go on human skin like a heating pad or a rice sock. There are also some medications that ease tinnitus I believe so maybe talk to your doctor about that.I’m sorry I don’t have more suggestions! I don’t deal with an awful lot of tinnitus, just some mild hearing loss and cognitive perception issues so I unfortunately don’t have too much to give on this subject. But hopefully one of my followers will have an idea!And also I apologize for taking so long to respond. I’ve been pretty MIA on Tumblr as of late. -CRebel

[chronicallyrebellious]

What treatment are you using for your pots? If u don’t mind me asking

Hello, friend!I know this ask is really old so I’m just gonna preface this by saying that when you sent this I may have been on a different treatment regimen than I am now because my health is constantly changing and evolving so, you know, treatment plans also change a lot for me.Currently, we are very adamant about pushing fluids as much as I can, and increasing salt. Sometimes we combine those two things and I drink salt water. I also have some compression gear but due to the undiagnosed shit going on with my legs I can’t wear them very long without pain. During the summer months, like how it is right now, we have 3 ACs running in my house (I live somewhere hot and humid) which keeps me from overheating and passing out. This is super important to keep me from getting sick. I also use a wheelchair for completely unrelated problems, but because I’m in a wheelchair full time we aren’t exactly worried about me falling and hitting my head.As far as medication goes, I have had an allergic reaction to the “usual” medications like midodrine and Florinef. We have a few other meds we want to try, but unfortunately I am being investigated for a mast cell disease so it’s not currently safe for me to try new meds, and the med we want to try next is already difficult to get approved without this added barrier so I don’t have any POTS-specific meds at the moment.(Quick note here but lot of people control their POTS without medication and it is absolutely not wrong to do that. Sometimes POTS responds really well by just increasing fluids.)I hesitate to share this cause I don’t want people on here thinking this is the only option, but for awhile I did have a port for IV fluid infusions daily. This was when I was at my worst and couldn’t sit up without backing out, couldn’t drink enough water to hydrate orally, and also had a feeding tube placed for a little bit so it wasn’t just for POTS, but it helped a lot with those symptoms because fluids have been known to decrease symptoms in some people with POTS. But my port got pulled due to an infection and we have sense been able to get my stomach tolerating enough water to keep me out of the hospital so that’s good, but obviously, that also means my POTS is no longer under control.Hope this answers your question!-CRebel

[impotsiblelife]

I wish healthy people understood that getting a diagnosis ≠ getting an effective treatment. 

There are so many chronic illnesses for which there aren’t very effective medications or therapies. Even if your chronic illness has a few good treatments available, they might not work for you, or they might be out of your reach because your doctor won’t prescribe them or your insurance won’t cover them. 

If you do find a medication or treatment that works for you, it might only alleviate some of your symptoms and restore part of your function. It might come with unpleasant side effects that interfere with your life in new ways. 

Chronic illnesses are complex, and treating one is never as simple as getting a diagnosis and being prescribed a pill that fixes everything (or even helps). 

[mysharona1987]

[disabled-dionysus]

[ID: tweet by @annieelainey: “Please leave accessibility info in your event invites. This is just as important as a damn dress code or price of tickets.

You don’t want people getting denied at the door or having to leave early because of an accessibility issue.” End ID.]

[thejusticethatissocial]

[Image description - a series of tweets by @EbThen that say:

I should’ve gone to bed before the Stephen Hawking news broke. Seeing a headline describing him as having “overcome” a “debilitating disease” to “publish books on the mysteries of the universe” is making me grumpy.

Stephen Hawking was an exceptionally privileged white English man who had access to the necessary supports to successfully navigate a world that puts little importance on making itself accessible. 

I mean, he did pretty amazing stuff but it wasn’t amazing because he had ALS and used a wheelchair and AAC. Those are just things. The amazing stuff Stephen Hawking did was amazing because he thought and said amazing things.

Stop being amazed that a few Disabled people do awesome world-changing stuff. Start wondering why more of us don’t. It’s not because a wheelchair and AAC somehow get in the way of doing theoretical physics. It’s because a lot of us deal with ridiculously huge access barriers.

Also stop only valuing Disabled people who do awesome world-changing stuff. We don’t need to be supercrips to be worthwhile. Disabled people are allowed to be normal schlubs and not be treated like that means we’re failures.

When you write a headline that implies ALS, a wheelchair and machine-facilitated speech are natural and expected barriers to being a successful scientist, you’re telling on yourself. Those circumstances aren’t inevitable barriers to doing all sorts of science.

What’s frustrating is that we’re talking about a Disabled person who had so much opportunity and access to excellent supports and tools and people still talk about that like it’s tragedy. And I’m thinking how many folks I know could benefit from those things.

Ableism is so fucking exhausting]

[citizenshipandsocialjustice]

[selfcarevibes]

Great reminders from @positivelypresent

[willblogforspoons]

Toxic mothers: “I’m sorry I’m making your life hell, but I just can’t take the guilt, so please get over it.”

[super-metroid]

claims to be pro sleep 

stays awake anyway

[hamletthedane]

Pro tip: if an evangelical stranger approaches you asking to pray for you, there’s inevitably something about you that they see and want to change. [Ex: I attend a very conservative, very religious uni and am clearly tomboyish/lesbiany, and thus am constantly attracting evangelical strangers] If you can’t shake them (usually very difficult), then turn the tactic upon them by asking if they mind you leading the prayer bc “I have a few things on my mind.”

Then talk about whatever it is that’s making them uncomfortable. I ask god to protect all the lgbt+ kids that are lost, isolated or homeless. I mention my non-Christian brothers, sisters, and siblings that have to fight for recognition and respect in a monoreligious nation. I pray for the protection of immigrants and refugees, reminding my evangelical friends that their savoir was once one of that number. You can pray for pregnant mothers to find the resources and abortive care that they need, if they need it, if you’re feeling particularly brave.

This achieves two things: 1) there is no response to this, esp if you wrap it up with “amen, thank you guys so much for doing that with me. I hope y'all have a blessed day” and leave them no room to continue the prayer. But more importantly 2) that group will NEVER bother you again and you will show them, using their own method against them, that their prayer isn’t an act of faith, but of power.

Just thought I’d share bc I know that I used to be accosted by evangelical strangers once a week on my uni campus and never had a good response or ‘out’. This is by far the most effective method of shutting that sort of behavior down real quick.

[honeydotes-deactivated20210606]

wow I really appreciate nice anons a lot

this is a post dedicated to every anon that has chosen to use their anonymity to be good and send encouraging and nice messages instead of being mean to someone, you guys rock

[lymeprincess]

When it’s time to take my meds

[Gif of woman from informercial opening a cupboard and after a brief pause, a mass of tupperware containers tumble out, knocking her over]