#sjia

[jiateen]

“ It’s ludicrous! Is this how my life is going to be? Are injuries from merely existing going to start appearing out of thin air now more frequently? How am I going to live? How am I going to take care of myself? I can’t be who I want to be because I’m trapped inside this stupid body!! I can’t even be alive let alone be as active as I want! I can’t even give blood! ”

[mamas-still-doing-it-all]

I just keep going. No matter what… even when I don’t know how I do it. I take this pain everywhere I go, all the way up with me and all of my successes.

[spoonie-living]

Macrophage Activation Syndrome Session

MAS is one of the leading causes of death for people with Systemic Juvenile Idiopathic Arthritis (SJIA) or Adult Onset Still’s Disease (AOSD). This can also be a worry for people with SLE lupus or Kawasaki Disease.

MAS is some scary business, but it’s a possibility you’ve gotta stay on top of. If you’re at risk, be sure to read this writeup to get the most up-to-date research and info on causes, diagnosis, monitoring, and treatment. As always, Kirstie is thorough and doesn’t hold back on the scaries.

All this is from the 2017 American College of Rheumatology Meeting---nice and fresh!

[nicejewishgirl]

Omg a movie was made and the lead has my disease?!? Has anyone ever heard of the “Big Sick”?

I hope this isn’t another abelist film like “Me Before You” or “Love and Other Drugs”. Both films made me so depressed about myself and how others would see me as baggage. I’m looking up this film and I hope it’s not going to make a mockery of Still’s disease bc I don’t think my self esteem can take it.

My disease is so rare and no one understands what I go through and I hope the film achieved awareness about my disability without making me feel that my life is worthless.

[jiateen]

Somehow I’ve managed to hurt the knee on my ‘good’ leg and it’s proving to be a rather frustrating thing to not rely on it how I need to. It’s making everything else hurt and I don’t even know what’s wrong with it yet. I’m so done. I give up. I don’t want to do this anymore… I just want to ‘get better’ but there is no getting better— there’s no cure. After nearly a decade you would think it stings less… but it doesn’t and I just can’t anymore.

[mamas-still-doing-it-all]

I wish an invisible illness was invisible to the person who has it too.

[mamas-still-doing-it-all]

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

[jiateen]

My rheumatologist suggested I write a book basically about my life and what it’s like to live with a chronic invisible illness (specifically JIA). I didn’t fully consider it then, but I am now. I just don’t know if anyone would be interested in reading it.