#invisibleillness
Beauty is an anesthetic//
Wellness is a commodity//
Be who you are and take up your space #HospitalGlam
[#imagedescription: I’m clad in black with blue lips on a medical bed. My gaze is directed towards someone offscreen. Yours is directed at me.]
#disabled #saytheword #disabledandcute #invisibleillness
https://www.instagram.com/p/Bp_U6F7HJpp/?utm_source=ig_tumblr_share&igshid=1oy2arlizdwie
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I had the incredible pleasure of getting to visit and chat with @toitroutman for a little while last week. This woman is a badass who’s been living with #lupus for decades, and told me a lot about her recent admits. Swapping stories about hospitalists and the confusion that comes with the gap between how we look and how our bodies behave felt like a deep exhale. Sometimes there’s nothing more healing than community. #HospitalGlam
[#imagedescription: a shot of Toi and I standing next to her hospital bed, taken by her son. Toi is in the foreground, showing me how to work some tech offscreen, and I’m standing behind her watching and smiling, because this is also part of illness]
#invisibleillness #chronicillness #invisibledisabilities #disabled #ehlersdanlos #tbt
https://www.instagram.com/p/BpSJrIZHlLU/?utm_source=ig_tumblr_share&igshid=1tndg1tmfscj0
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This was taken years ago, when I went into my doctor to get checked out after being assaulted. I took photos, as I always do, to enforce my control over the space where I would be examined; where I would go over what happened and determine whether or not I’d come out with more injuries than I already guessed. I never shared it because some things are for me, and I did not want to give it away.
I’m sharing it today because so many of us have survived, and will keep going. We are here for each other, and don’t need to cut ourselves open to receive support. Our strength is flexible, and looks however we need it to look. You are not doing it wrong as long as you stay alive.
I wish none of us had to go through this.
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#HospitalGlam #violence #tw #sexualassault #ptsd #invisibleillness #invisibledisability #survivor #metoo
[#imagedescription: I’m disheveled, on the edge of a medical bed in a gyn exam room, gripping the light above me. I am looking into the lens.]
https://www.instagram.com/p/Bom7SJpHufx/?utm_source=ig_tumblr_share&igshid=1nypcx87plyn3
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#HospitalGlam: Same day, different providers. In the top photo I’d been arguing with techs and staff for 45 minutes before an invasive procedure, and this photo was taken while a tech was staring at me, with the hospital’s legal & corporate departments on the phone. We are always fighting for care, even in vulnerable states. The bottom photo was immediately after that appointment, in another doctor’s office, who gave me test results that weren’t the best but we could meet where we both were emotionally, in this world, right now, and breathe. Every day is hard and weird but there are pockets of hope in the people around us. Let them hold us. //
[#imagedescription: horizontally split image showing me in two separate clinical spaces: in the top one it is me sitting on a gurney in a hospital gown prior to a bilateral breast ultrasound, paying more attention to the speakerphone discussion than the image. In the bottom, I’m sitting on a medical bed in a bright exam room, cross legged in a long black dress, animatedly talking to a doctor, off camera. The mood is very different between the images, as it was between appointments.] /
#chronicillness #disability #disabledandcute #ehlersdanlosgrrrls #selfadvocacy #invisibleillness #survivor
https://www.instagram.com/p/BokKAeqHSWL/?utm_source=ig_tumblr_share&igshid=q4uegdvsrq5o
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Like @annieelainey & @michelle_roger said, #AmbulatoryWheelchairUsersExist. My joints sublux dozens of times an hour, so I use a combination of braces, mobility aids, and when someone is available to help me out, I use a wheelchair. When traveling or going long distances I’m usually in one. It’s a necessary part of independence for someone whose mobility fluctuates. [This photo with @valeriebjarrett was taken during the tail end of the 2016 Women’s History Month event at the White House. It was an incredible day that I’m so fortunate to have experienced!]
#invisibledisabilities #ehlersdanlos #invisibleillness #tbt (at The Obama White House)
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Each interaction I have with a doctor bridges a gap between our knowledge of my body. Every interaction I have with another sick person bridges a gap in our understanding of disability and what is in our power. #HospitalGlam
[#imagedescription: I’m in black, at the foot of a doctor’s bed. I do not appear ill.]
#invisibleillness #invisibledisability #ehlersdanlos
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Reminder: I’m posting older work at @dunlop_art_gallery all week as part of their #URLIRLyqr exhibit.
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Get your #salty dysautonomia awareness shirt in time for Dysautonomia Awareness Month next month! Available as t-shirts, v-necks, crewneck sweatshirts, and youth t-shirts in various colors and sizes! Only available for 3 more days!
I said what I said.
A post for when you don’t know what to say.
https://www.warriorgoddessmusings.com/blog/dont-know-what-to-say
NEW BLOG POST!
Top 10 Drugstore Beauty Products Under $10 Each:
1. Yes To Cucumbers soothing eye gel [$8]
2. Batiste dry shampoo [$8]
3. Garnier Fructis strengthening treat hair mask [$3]
4. Queen Helene cocoa butter face and body cream [$3]
5. Wet n Wild makeup remover towelettes [$3]
6. Noxzema classic face wash cream [$4]
7. Nugg hydrating face mask [$4]
8. Herbal Essences tousling spray gel [$3]
9. Garnier skinactive miracle anti-fatigue sleeping cream [$8]
10. Formula 10.0.6 on your mark blemish mark fader [$9]
https://www.warriorgoddessmusings.com/blog/10-drugstore-products-under-10
I was recently yelled at by a man driving by as I was walking into a Starbucks after parking in a handicap spot. “Liar! Liar!” My first thought was “you weenie come back and say that to my face!” Then the shame set in. For awhile I felt guilty of…something. I know I’m sick but I know I don’t look sick, so maybe I don’t deserve my placard? It’s confusing and I understand. But then I reminded myself that 96% of chronic illnesses are invisible. Just because I look fine doesn’t mean my illness goes away or isn’t serious enough to be disabling. It’s not me that’s somehow confusing or misleading, it’s society and our expectations and stereotypes. Sick doesn’t have a look and neither does disabled. This idea that to be valid your illness or disability must be visible is ludicrous when you learn how many people are suffering from something unseen. Society needs a major reform in many ways, but especially with respect to its treatment and expectations of chronically ill and disabled people. What we really need is to just stop being so dang judgmental in general! Was it ever any of his business where I parked or if I “deserved” my license plate? No sir! All that I ask of people at this point isn’t even kindness, just neutrality or even indifference! Let me be! Can I just get my chai in peace?!
TW ⚠️ suicide
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So I wrote a thing that I felt like sharing for the first time in quite awhile. I always find it sort of ironic that September is both Suicide Prevention Month and Pain Awareness Month, but that we rarely talk about suicide prevention in the context of chronic pain. And I shared my thoughts on Twitter about Suicide Prevention Month and how a lot of the campaigns for it don’t resonate with me as a chronically ill person. The tweets got a much larger response than I was expecting, so I took some time to write a full-length article elaborating on my initial tweets (which are included in the article). Basically I just expressed that I don’t feel seen or heard by the insistence that “it gets better.” In this article, I share the ways that I cope with my own feelings of depression, and the things that help me continue choosing life even when I know it might not get better. Please feel free to share if you feel this may be helpful to someone else!
On this last day of the Chronic Readers Club fundraiser, I just want to say thank you. I am so happy to share that over the past two weeks, enough money was raised to purchase every chronic reader on the waiting list a book and to ship every package!!! And so many additional items have been donated to include that will make these some of the most fun packages ever! So thank you, from the bottom of my heart, to everyone who has been kind enough to donate in any way! I am so appreciative of your generosity, and I’m so excited to get these packages sent out! ❤️
P.S. You can still order a “chronic reader” shirt through today but this is the last day! So if you want one, be sure to order soon! bonfire.com/chronic-reader
When you’re high on prednisone and you end up looking like a chipmunk. A complete stranger called me that before in public. Talk about tactless being. My second photo I took it 3 yrs ago. Well good thing about this snap chat you hide your Fat ass face through their filters. Lmao. Anyway I’m really bored and i just want to take selfies before I take off my mask. Sigh I need help lol . Goodnight! #prednisone #lupus #moonface #chubby #chimpmunk #idc #high #bored #pulmonaryhypertension #invisibleillness #pah
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3️⃣3️⃣ ♓️ it’s been a crazy year. Ups and downs with my health crisis. I can hear my own heartbeat through my ears and can literally see my heart pumping through my neck. It’s like having super new powers lol. My prayers every night and day. 1. Please let me sleep. 2. Please let me breathe ok 3. Please no more pain. Thankful I have my family to support me Sometimes I still have to remind them that there are things i cannot do. #lupus #PAH #pulmonaryhypertension #sle #health #awareness #invisibleillness #redhair yay! Lol
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Your quarterly reminder is here.
What is #HospitalGlam? For those who are new to the project:
#HospitalGlam is a social movement that uses site specific self portraiture (or selfies) to further self advocacy and boost disabled and chronically ill voices. The term #HospitalGlam was coined as a dark nod at the complexities in representing invisible illness. The project started by appropriating fashion imagery and reinserting it into medical environments using bodies that don’t outwardly present as sick or disabled. #HospitalGlam is about contextualizing ourselves inside the often alienating medical environment in order to assert our rights as patients and better our treatment. By taking #HospitalGlam photos and posting them on social media, patients increase awareness of invisible illnesses in their communities and with doctors. -
#HospitalGlam is now a hashtag that gives a visual to the work of thousands of disabled and chronically ill people who advocate for themselves by taking up space in clinical enviornments. #HospitalGlam and it’s participants have been covered in Buzzfeed, HuffPo, The Guardian, and more. Below are some brief guidelines for the project, which are explained in greater detail in the Hospitalglam.com/FAQ. I recommend the FAQ. -
-You must be in the photo
-It must be in a clinical environment. -
-Bathrooms, Cars, or other places where you might not need to advocate for yourself with a medical professional do not apply. -
-POV shots (needle in arm, or shots of your procedures instead of you) are excluded from this project.
-Images of text only have no place.
-You don’t have to wear a special outfit, or makeup or anything fancy. Just be yourself and push for the treatment you need. It is enough.Thank you!
#disabled #invisibleillness #chronicillness#disabilityfashion #disabledartists#whatishospitalglam #hospitalglamfaq#periodicreminders #tbt
[#imagedescription: #tbt self portrait taken prior to an exam. I’m standing beside the medical bed, with my cane]
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Examined or Seen
#HospitalGlam
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#invisibleillness #disability #ehlersdanlos #dysautonomia #chronicpain
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#HospitalGlam: The tech and I spoke about procedural stress, and how seeing something from a different perspective, or acknowledging that trauma can be hard to see, can make diagnosis and treatment easier on both doctors and patients.
[#imagedescription: A straight on, waist-up photo of me, sweeping my hair back, in the glass booth seconds before #PulmonaryTesting began.]
#EhlersDanlosGrrrls #InvisibleIllness #Disability #lungs #chronicillness #invisibledisabilities
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“Self care is not selfish. It’s an act of self respect.”
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Taking this advice and resting tomorrow before I go under anesthesia to get a wisdom tooth pulled on Tuesday. I’m super worried I may react badly to the anesthesia. The last time I was under was when I was 14 and my tolerance to certain meds isn’t the greatest, don’t know how I’m going to feel or how my body’s going to react. Thankfully my mom will be with me every step of the way
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••• Please ask for my permission to repost my quotes •••
#Art #Creative #Tyopgraphy #ChronicIllness #InvisibleIllness #Disabled #Spoonie #ChronicLyme #LymeDisease #DesignTexts #vquotes__ #DesignLab #MadeWithDesignLab #PicLabQuotes #QuoteOfTheDay (at Nova Scotia)
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“One of the most deceptive elements of Lyme Disease, however, is that when you start to feel better you think it forever.”
@allyhilfiger
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I love this quote because it’s so true! I was feeling great during March and April, then boom— during May and June I was set back again. Now most days I am struggling with crushing fatigue.
I have a family reunion tomorrow, and the temperatures are going to be high, so I’m worried about the heat effecting my fatigue, nausea, orthostatic intolerance & palpitations I usually get with this type of weather. I’m hoping my symptoms will be manageable and I’ll be able to enjoy my time spent with family
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Quote tags
••• Please ask for my permission to repost my quotes •••
#Art #Creative #Tyopgraphy #ChronicIllness #InvisibleIllness #Disabled #Spoonie #ChronicLyme #LymeDisease #DesignTexts #vquotes__ #DesignLab #MadeWithDesignLab #PicLabQuotes #QuoteOfTheDay (at Nova Scotia)
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“Happiness isn’t about getting what you want all the time.
It’s about loving what you have and being grateful for it.”
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••• Please ask for my permission to repost my quotes •••
#Art #Creative #Tyopgraphy #ChronicIllness #InvisibleIllness #Disabled #Spoonie #ChronicLyme #LymeDisease #DesignTexts #vquotes__ #DesignLab #MadeWithDesignLab #PicLabQuotes #QuoteOfTheDay (at Nova Scotia)
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