chronically-thespy - Tumblr blog

[chronically-thespy]

#costochondritis is truly evil! The first time I had it, I ended up having an anxiety attack on top of it because I honestly thought I was having a heart attack because of the pain and whatnot. Thankfully, all though it is excruciatingly painful and feels like an elephant is sitting on my chest, costochondritis does not actually cause any harm to the body. But, still, it's completely miserable to go through. I #dislocated my rib a little bit ago which has caused #inflammation in the #cartilage connecting my #ribs to my #sternum. So, right now, I'm alternating between an #icepack and my #heatingpad. Gotta love all the #comorbidities of #ehlersdanlossyndrome. (at Allen, Texas)

[chronically-thespy]

My fingertips are so angry (my finger joints as well because #dislocating back to back to back) from practicing my #ukulele for too long. It was worth it though because I'm getting much better. I've even reached the point of being able to #sing while playing some songs! (at Allen, Texas)

[chronically-thespy]

My fingertips are so angry (my finger joints as well because #dislocating back to back to back) from practicing my #ukulele for too long. It was worth it though because I'm getting much better. I've even reached the point of being able to #sing while playing some songs! #fingertips #calluses #dislocation #dislocated #ehlersdanlossyndrome #eds #edspain #edslife #fatigue #chronicpain #chronicillness #chronicallyill #spoonie #spoonielife #zebra #zebrawarrior #pots #posturalorthostatictachycardiasyndrome #cfs #ME #mecfs #fatigue #musclespasms #weakhands #weakness #dysautonomia #warrior #music #musiclover #fibromyalgia (at Allen, Texas)

[chronically-thespy]

And it is spreading to my face now... I really need to get tested for Mast Cell Activation Syndrome as soon as possible... #rash #allergies #allergicreaction #allergicrash #mcas #mcad #mastcellactivationsyndrome #mastcellactivationdisorder #mastcellactivation #eds #ehlersdanlos #ehlersdanlossyndrome

[chronically-thespy]

My heating pad has died. Does anyone have any recommendations for my next one? The larger, the better. And, ideally, have the option for manual shutoff instead of only having the 2 hour automatic shutoff. #heatingpad #pain #chronicpain #eds #edslife #jointpain #musclepain #musculoskeletalpain #painrelief #endometriosis #endometriosisawareness #endometriosispain #backpain #neckpain #migraine #migraines #migrainewithaura #headache #gastroparesispain #edspain #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlossyndromeproblems #ehlersdanlosproblems #spoonie #spoonielife #zebra #zebrawarrior #chronicillness

[chronically-thespy]

TW: Talking about vomiting. My face sure seems as though it is getting skinny. I don't know if it's just the angle or what, but I feel like I look almost gaunt in this picture that I took after throwing up earlier once I was back in bed and had taken an Ativan to combat the panic attack I had because I couldn't catch my breath no matter how hard I tried while I was dry heaving for about 10 minutes straight. This is really getting old. I wish I didn't have to make a sacrifice to the porcelain god every time I eat and about 2/3 of the time I drink. I'm beyond sick and tired of being sick and tired.

[chronically-thespy]

Finally watching Moana for the first time. Loving it so far! #moana #disney #disneyprincess #movie #movienight #sickinbed #spoonielife #spoonie #zebra #zebrawarrior #ehlersdanlos #ehlersdanlossyndrome #eds #edslife #ehlersdanlosproblems #pots #potssyndrome #potsie #potsies #posturalorthostatictachycardiasyndrome #potslife #gastroparesiswarrior #gastroparesis #gastroparesislife #netflix #endometriosis #ovariancyst #asthma #migraines #migrainewithaura #migraine #chronicillness #chronicallyill #chronicpain #chronicfatigue #severepain #nausea #music #sing #singing (at Allen, Texas)

[chronically-thespy]

[chronically-thespy]

Bruising from dislocating my middle knuckle by opening a can of ginger ale. #eds #ehlersdanlossyndrome #spoonie #spoonieproblems #zebra #dislocation #chronicallyill #chronicallyfabulous

[chronically-thespy]

Reminds me of the time yay my former rheumatologist told me to go for daily 30 minute walks around my neighborhood. I'm in a wheelchair and unable to walk... When I had my next appointment and she asked if I had been going for the walks, I responded with, "I physically cannot walk. That's why I'm in the wheelchair... How am I supposed to go for a walk around my neighborhood?" Her response was to say in a very nasty and condescending tone, "Well you obviously just don't want to get better then!" Ugh...

I got a rheumatologist tell me to wear uggs or crocs to help with my feet

Those are literally the worst shoes someone with flat feet and feet that literally seem to be collapsing and changing shape could possibly wear? They aren’t supportive at all

Then she told me to exercise wearing them!! You can’t exercise in crocs oh my god I couldn’t even respond I just stared at her I’d been waiting to see her for months because she’s supposedly an expert and just… wow

What the fuck. Honestly in my experience rheumatologists are the absolute worst for having no idea what the fuck they’re talking about. I’m really sorry that happened, it must’ve been really frustrating, especially because you’d waited so long to see her. Uggs…………..

-Rhys

[chronically-thespy]

Reblog if you have EDS, with your type in the tags

“Classical” “Hypermobile” “Vascular” “Kyphoscolisos” “Arthrochalasia” “Dermosparaxis” and “Unclassified” are all accepted

* This is for a masterpost of users with Ehlers-Danlos, so by reblogging this, you’re giving me permission to add you to the list

[chronically-thespy]

[chronically-thespy]

My first 4 attempts at painting with watercolor. The first one is supposed to be a rose. I like how the flower itself turned out, but I hate the stem. However, I am pretty satisfied with it considering I haven't attempted to paint (or draw or do any kind of visual art) since I was in my mandatory art class in middle school 17 years ago. The second one was a bit of a failure I detest the stems and the 3 flowers on the top and left side. I do love how the flower on the right turned out, though, as well as the bud in the bottom right corner that crosses stems with the pink flower I like. The third painting was also a failure. While I do like the way the colors turned out, I'm disappointed in the shape of it. The wings are far too narrow and angular and, because I misjudged the space I would need between the wings to add the body, it ended up being to wide and round. The antennae suck too. Now, the fourth one which I painted last night, I can find very little fault with it. The colors of the poppy turned out beautifully and I got quite obviously better at creating stems. It apparently turned out so nicely that, after a friend saw it, she requested I paint a dogwood branch with blossoms for her so that she can get it tattooed on her wrist to cover her surgical scar. That, to me, is a massive complement. And, after seeing it on Whisper, a complete stranger told me that it was good enough to be sold and said that I should start making greeting cards with my paintings (which is something I already planned to do down the line as I got more skilled). He even offered to sell them for me at his booth that he sets up at craft fairs and flea markets since my disabilities prevent me from doing so myself (through talking, we discovered that he knows quite a few of my old friends and that his brother and I were friendly acquaintances in high school so we are no longer complete strangers anymore...small frigging world)!

[chronically-thespy]

Raise your hand if you don’t have Halloween plans cause your chronically ill body and the things it does is scary enough.

a crazy pale complexion from never leaving the house

dark circles from never sleeping/insomnia

joints that dislocate at the drop of a hat

blood pooling in legs (bad circulation/POTS)

etc.

[chronically-thespy]

Dignitas

I'm 29 years old and my quality of life is almost nonexistent. I thought I could last at least 10-20 more years before going through with it. However, things are getting so bad so incredibly fast that I think I will be lucky to make it 2-5 more years before making my trip to Dignitas. I am in so much pain all 24/7 and am so sick and weak that I can't really do anything by myself anymore. Even though I have no control over my life, at least Dignitas will allow me to have control over my death. I don't know how to tell my friends and family my intent though. I know how much it will devastate my loved ones (the few that are still around and haven't abandoned me already at least). And, before anyone says that this decision was made because I'm depressed, of course I'm depressed. However, I made this decision while I had my depression under full control with antidepressants and when my health was still good enough that I was able to actually live a relatively full and active life.

[chronically-thespy]

All set up for my 72 hour EEG. Thankfully, I get to do it from the comfort of my own home. Hopefully, they will be able to figure out the cause of my vast array of neurological symptoms.

[chronically-thespy]

This is Harry. As a boy Harry was very, very shy.

Some people might have even said that he was painfully shy. As if his shyness caused them pain, and not the other way around. There are many things that can cause a person to recede, to look away from other people’s eyes, or to choose empty hallways over crowded ones. Some shy people try to reach out, and try, and nothing seems to come back. And then there’s just a point where they stop trying.

In Harry’s case, he was slapped in the face and called names designed to isolate him, designed to deliver maximum damage. This because he’d come from another country, and didn’t know the right words to use, or the right way to say them. And so, Harry learned to be still. To camouflage, to be the least.

Some people describe this as receding into a shell, where the stillness hardens and protects. But the eyes, even when they look down and away, are still watching, still looking for some way out, or in. Painfully shy.

Then, in middle school, Harry found theater, where he forced himself to speak through other people’s words. And then dance, where he started to speak through the movements of his body. To be so still for so long when you’re young means a lot of pent-up energy, and it was released there, through work, endless work.

If someone carves into a sampling with a knife, the injury is as wide as the entire trunk. Though that mark will never fully heal, even grow the tree around it, and as you grow, the scar gets smaller in proportion.

If you, right now, are in a shell, you should know that you’re not alone. That there are many, many other people like you, and that there’s nothing wrong with you. It might even be necessary right now, it might keep you safe for a time. But after the danger is gone, after it has exhausted its use, you’ll find a way out.

You may need help, you might need to work pretty hard. You may need to find some ways to laugh at yourself. Or find a passion or friend. But you will find it. And when you do, it will be so good to see you.

This is Harry. As a boy, Harry was very, very shy.

If you are in a shell… (video) | narrated by ze frank | choreography and performance by Harry Shum Jr.