There are over 300,000 kids in the United States living with some form of juvenile arthritis. These diseases can cause horrible deformities, mental health issues, and can even be fatal. This group of diseases is more prevalent than juvenile diabetes, muscular dystrophy, cystic fibrosis, and leukemia, yet it only receives a fraction of research funds ($2 million versus over $100 million for each of the previous diseases). There are 11 states without a pediatric rheumatologist and 7 with only one, meaning children are waiting to be diagnosed which decreases their chances of remission. This also means children may be seeing adult rheumatolgists, who are unfamiliar with child-specific issues and complications, or are spending a lot of money and time to travel far away to pediatric rheumys who are likely taxed due to the shortage. In the seven years I’ve been involved in advocacy with these diseases, I have seen children and adults with juvenile arthritis pass away either from infections or from complications of these diseases. I’ve lost close friends, and nearly lost others.
The nurses always say rate your pain on a scale of 1-10, being the worst pain you have ever felt. So being that I have a chronic pain disease, I always say 7, unless for some reason it hurts so bad I am crying and screaming, that’s my 10. But then the doctors refuse to give me anything for the pain because I only rated my pain a 7. The problem
with this is my 7 would be someone else’s 1000.
Everyone talks about the stigma of being mentally ill, or being part of the LGBT community. The news openly discusses racism and minority’s. But no one talks about the stigma against disabled people. They don’t talk about the subpar medical care, or making us wait longer then everyone else at the ED because the disease is chronic. They don’t talk about accusing us of being drug attics because we need pain pills even when we’re young. They don’t even talk about all the employers who won’t hire us because we are disabled. In fact they never talk about us at all. It’s as if we are as invisible
as the illnesses we have.
I am not ashamed of my illness. It’s a part of me and I own it. It’s not something I caught or something I got because of bad life choices. It’s something I was born with. I love myself and being a spoonie is just part of who I am.
Please lee this #SJIA fighter babygirl in your thoughts. She’s in the hospital and not doing awesome. Our community has lost three kids in as many weeks, and that’s one tradition I don’t want to continue ❤️ #rheum #juvenilearthritis #macrophageactivationsyndrome #systemicjuvenilearthritis
Please read thoroughly and re-post.
This is me sitting at the bottom of the stairs of my apartment that I can no longer get up into because of my chronic illness stills disease. I asked for reasonable accommodations under the ADA (a downstairs apartment) and the management staff proceeded to tell me that they would let me out of my apartment and I was free to go somewhere else but since my husband is able bodied they won’t let us out of our lease. I had to skip out on a lease due to my disability due to management not understanding. They also gave me a noise notice for falling and limping which bothered the neighbors downstairs.
It is wrong that landlords so much power.
I am now in between apartments and in a hotel while I wait for a downstairs but I supposedly have to pay a lot of money for skipping out on a lease to an apartment that I can’t even get into.
Let’s pass this on and stop the harassment and segregation of disabled people.
Thank you to all my friends, followers, and occasional rebloggers!
When I started SJIA it was to clean up my primary interest based blog. Today it has quadruple the number of followers of my primary blog! Thank you all ever so much.
I admire and respect every single one of you and it warms my heart to see so many people that care for their fellow human beings. I follow most of you through my primary blog and hope to add all of you. Thank you for liking and reblogging my posts and providing me with your posts to reblog.
You are such a diverse group, scifi fans, political junkies, LGBT, political and social activists, fitness and healthy living devotees, honorable veterans, inspirational happy people spreading joy, people with chronic illness, anime and cosplay fans, social justice warriors, the oppressed fighting for equality, and so many more. Regardless of your color, gender, sexual preference, geographical location, age, cultural heritage, or social status I want you to know it is an honor to share with so many people of conscience. Thank you all from the bottom of my heart for being here and standing up to be counted!
As a species, humans tends to focus on the “I’ll be happy if/when…” mindset. For us sick chicks and dudes, much of that centers around being happy once our health issues are under control. This is a dangerous mindset to have though - not only may that not make you happy, but that may never come and you’ll have wasted life and missed out on much while wishing things were different. Challenge yourself today by going out and doing something you’ve been waiting to do! Tonight I’m going to work on my #MedX application and attend my MedX class and take a look at possible schooling options! - what will you do? #rheum #spoonie #sjia #stillsdisease #juvenilearthritis #gogetit