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#stillsdisease
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I have stills disease and I battle chronic illness but I work full time and I just got into law school. I push myself so hard every day that I think I might break... and yet ever day that goes by I don’t. Because I am happy and I believe in me. Mindset is 99% of the battle.
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crippledcunt · 4 years
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CHRONIC in the TIME of COVID
There is something comforting in the entire world being beholden to the same existence I’ve been living (of course I want everyone safe, etc.) for decades. I’ve been feeling a touch more anxiety regarding when the Shelter and Place order is lifted.
People will be outside and celebrating, as everyone should be doing after such a distressing and unprecedented experience, while I will have a slew of doctors appointments awaiting me.
I want to ask the world: Do you know this feeling of fear, isolation, economic uncertainty and loneliness? I ask you to do this: use your imagination to add physical pain on top of your pandemic experience, and REMEMBER IT. Remember it deeply. The popular sentiment “We’ll get through this” is certainly true for a large portion of society, but what about those of us who only recently realized we have been in training for Social Distancing for quite some time, decades even, due to an acute illness, chronic illness or disability? WE will get through the pandemic but will we be left behind to fend for ourselves in a healthcare system that shows little mercy.
Here is what chronic illness is, using a resonant metaphor for our current national experience: Chronic Illness is a full-time job that you never filled out the application for. The work borders on daily torture, both physically and mentally, all while draining your finances.
Will all of the “new” forms of accessibility and awareness fade away as if the pandemic was a touchstone of a once dark period for Americans that we all overcame together? This is my worry.
Will I retreat back into my life “inside the snow globe” once again alone in understanding what a “Chronic Life” can do to a person on every level? Will I find myself, once again, with my nose pressed up against the glass bubble wherein this illness has sequestered me for the last 10 years, as I watch my peers and the world swirl and move on around me while I fight to string together enough “good days” to break the glass and be in the magic of life outside the “snow globe?” This is my fear.
I’m often astonished at what others take for granted when I’m out of my glass prison. I’m even more flabbergasted by the way I am treated: dismissed, spoken down to as if I’m lacking in intellect, my deformed hands either viewed as pitiable, inspiring, or too painful to be acknowledged.
At the end of a virtual class, only made available once the pandemic forced all us into quarantine, the teacher guides in a mantra, “We will get through this. We’ll get through this. We’ll get through this.” It brings me to tears. Collectively, I know we will “get through“ this pandemic. The tears come from knowing the 50 million Americans living with Autoimmune and Auto-inflammatory illnesses and those of us living with disability may be left behind.
Thank you,
CC
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BIO
CC has been living with Onset Systemic Juvenile Idiopathic Arthritis since she was 12 years old. This was before biologic medication was invented thus she recalls receiving “gold injections” as a treatment. After living with SJIA for 18 years a few co-morbidities join the party. CC is an advocate, actress, stand-up comic and writer. She never thought she would be grateful for hands that are ravaged by SJIA. They are, well, deformed. In the age of invisible illness she considers herself lucky to have “proof” of not only SJIA but her severe pain. When her digestive tract stopped functioning there was no outside evidence to prove her experience. Only after enduring invasive and truly medieval testing for 4 years did she receive a diagnosis and subsequent surgery. The surgery was only partially successful thus she hovers some where between her birth weight and passing for a grown woman. CC has literally been on every biologic clinical trial including a study involving Thalidomide. SJIA never out grew her and she now devotes her time to what ever this body she inhabits allows her to do, given the hour of day. She is an extrovert in the body of a sloth with no sense of direction. CC has been the keynote speaker for the Arthritis National Research Foundation, performed her stand-up for leaders in Research and Development across the globe with Amgen, spoken at employee education events at Bristol Myers Squibb, Patients Rising, and has a patient centered awareness campaign debuting this month with Creaky Joints. She also attended Pacifica Graduate Institute for her Master’s in Counseling Psychotherapy. CC’s stand-up is based on her life living with SJIA and its unwelcome friends that occupy her 5’2” body. CC grew up in New Jersey and now resides in Los Angeles with her partner for over eight years. They have two poodle mixes.
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Just because I'm at a conference doesn't mean I get to slack on my PT. Getting my exercises in before heading to ACR for today's sessions! #PT #physicaltherapy #rheum #SJIA #systemicjuvenilearthritis #juvenilearthritis #juvenileidiopathicarthritis #jia #stillsdisease #fibro #arthritis #arthritissucks #effarthritis #chroniclife #chronicpain #chronicillness #notstandingstillsdisease (at San Diego, California)
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angelkitten135 · 5 years
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Guess who's having an RA flare :D These photos were taken around 5am. We left the house around 1am to head to the hospital. Got some fluids, but still feel pretty bad. I have fevers, aches, throat pain, congestion, and swelling just to name some symptoms. I have the rarest and essentially the worst form of Juvenile Rheumatoid Arthritis. It's called Systemic JRA (it affects the entire immune system), aka "Stills Disease". It's seems I may have of started to develop it around 12ish, and the doctors found it a couple years ago because of a flare up. . . . . . . #medical #jra #ra #raflare #jraflare #juvenilerheumatoidarthritis #rheumatoidarthritis #flare #medicalflare #iv #stillsdisease #systemicJRA #systemicjuvenilerheumatoidarthritis https://www.instagram.com/p/B0ji7M-n5sO/?igshid=sbbuvax4mvcx
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spoonie-living · 7 years
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[Image description: Instagram post by kirbir: a photo of a sunburned person with short hair mugging for the camera. A (capped, unopened) syringe is poking out from between their breasts as they mug for the camera. The text reads: “Ever get sick of waiting for a shot to get closer to room temperature? Just use your boobs to warm it up! Between boobs or under boobs are great spots. What are some of your illness hacks?” followed by a number of relevant hashtags. Comments praise the poster and suggest tummy rolls and underboob, mentioning using this trick for insulin and kineret.]
[Original post]
Here’s a clever little trick for getting your shots to body temperature! There are plenty of warm spots around the body (armpits, under the knees, and between the thighs, for example). This may not be a surprise to veteran syringe-users, but newbies will likely appreciate the advice.
Kirstie’s Instagram is a great follow for social justice and chronic illness life. You may also enjoy her personal blog, Not Standing Still’s Disease, as well as her newest blog and community, Chronic Sex (chronic_self_love on Instagram).
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sandrospodcast · 4 years
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Janice Sylvia Brock: Embracing your challenges and knowing you have a gift
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Janice Sylvia Brock is a truly gifted and inspirational artist. Originally from Manchester, Janice started suffering from severe rheumatoid arthritis as a child, which resulted in her spending a lot of time in hospital – a condition she will live with for the rest of her life. It was here that her love for painting began. Despite her disability preventing her from being able to take her offered place at Manchester College of Art, the condition has far from stopped her achieving phenomenal success and her compassionate nature shines through in the work she has done to help others. She now has 2 studios; one in the beautiful Cheshire countryside and one overlooking the ocean in Barbados. Her work, which has sold for up to US$200,000, hangs in collections across the globe, including 2 at The White House in America. She also uses her art to help others. She offers art therapy in prisons, psychiatric hospitals and nursing homes and she works tirelessly to improve the quality of life for disabled people in the UK and Barbados and has donated work that has raised over US$250,000.
Janice talks to Sandro in an awe-inspiring way about living positively with her disability, why art can be so therapeutic and how she instinctively lives with so much compassion for helping others.
Find out more about / contact Janice here:
www.janicesylviabrock.com
Click here to listen:
https://apple.co/2ulJoeQ
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drrtypussie-blog · 6 years
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The Bitching Blog 1
Here I am. Saying hello to life. Saying hello to a virtual blog journal that doesn’t give a shit about me and only wants me for advertising and money.
Dear world that’s not listening. I have chronic PTSD. I was molested by a family member. I’m sure there is very few people reading this and are just scrolling past my whiney ass posts. But recently I started seeing a PTSD counselor and let me tell you, it’s a fucking trip.
I feel like one of those flying balloon noodles you see outside of shops for advertising and yet I’m still talking about advertising. Why? Don’t ask me, my brain is broken. I’m too determined to become 3 versions of superwoman before I die or I feel like I didn’t live a good life or live my life to the fullest.
Because of my autoimmune disease called Stills Disease, I’ve decided to take on the challenge of doing the Anti-Inflammatory diet full blown serious this time. The diet isn’t just about food, it’s also about getting enough sleep (yes... it is almost 3am right now) and exercise.
My husband and I decided this summer every Sunday I will be training my body for 14ners and more mountain biking and he will be doing 14ners Monday’s. Starting… today. If I can, I will go to the 14ners, but I’m training to do mountain biking in Moab, Utah for Thanksgiving and climbing mountains in Thailand in December.
Join me in the challenge? Wish me luck? Ignore me and say fuck you? Fine, I don’t really giving a flying fuck, please just have a nice day and take good care of yourself. Thank you and love you.
Yours,
DP
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sbobetlover · 6 years
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It has been 6 months since I had an injection site. They made a lot of fun ...
It has been 6 months since I had an injection site. They made a lot of fun …
It has been 6 months since I received an injection site. They suffered a lot of hip pain (especially in connection with #kineret), but they have worn off – this means that the next step is radio frequency imbalance. Waited for a month now for referrals and timing with new experts. . . It's funny how even though I leave behind-the-screen why scheduling can be so complicated, it does not make it…
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So I’ve been fighting a flare for the past week, last Sunday I didnt even get out of bed... because I knew I had to go to work the next day so I was saving my energy and I was so drained- but today I feel great... it’s so important to give yourself the time to heal.
Mamas-still-doing-it-all
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As you as hands on as me? 😂 Took forever to get some of my medical records, including old X-rays. It's hard to think that my hands, the ones that so often hurt or refuse to cooperate, are still 'normal' enough. Our bodies are fascinating pieces of machinery. We just need to get the software right. #givememydata #patientrecords #patientlife #gottalaugh #xray #xrays #rheum #SJIA #systemicjuvenilearthritis #juvenilearthritis #juvenileidiopathicarthritis #jia #stillsdisease #fibro #arthritis #arthritissucks #effarthritis #chroniclife #chronicpain #chronicillness #notstandingstillsdisease
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