Feb 20, 2023
Truth
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Truth
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I absolutely fucking hate how Medical Facilities think that if they smile and give you baby talk that somehow the lack of Quality Care will be overlooked. You don't have to be an obvious asshole to have clear discriminatory medical practices.
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!
Ok, so does anyone with chronic pain get like-- "my knee hurts but it's not PAINFUL" ? Like... if that makes ANY sense at all?
like it registers as discomfort and annoying but it’s not really PAIN that you take anything for?????? iDK???????
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The more you know 💜🦋
some things abt dealing w/SLE
+post-nasal drip all of the time. all of the time my throat is always so itchy and dry and i am never free of the torment
+actually so are my eyes. my eyes are dry all the time too
+never. ending. hives. they are never gone. ever. i am either healing from old ones, or there are Suddenly! new ones all over my back
+something is always going to lowkey hurt
+how about that disorientation and dizziness though
+was that a fever coming on or just a hot-flash, the ongoing saga
+my toes are purple and i can’t feel them where are my extra socks
+why can i not breathe properly right now, the sequel
+if i lie down, my body will feel better but my head will start trying to kill me
Gaslighting comes in many forms. Many people living with chronic conditions like lupus have reported medical gaslighting. But what about sel
I still gaslight myself, even though I’ve been diagnosed and treatment has greatly improved my quality of life. The first two rheumatologists I saw after becoming symptomatic told me I didn’t have lupus, that my symptoms were in my head and I was just anxious. That that has stuck with me and often makes me doubt that I actually have this disease. I have to constantly remind myself that this is real, that I truly do have lupus. I remind myself that my current rheumatologist wouldn’t have me on such heavy-duty immunosuppressants and biologic infusions if I didn’t actually have lupus. Medical gaslighting has made me anxious about going to new doctors or expressing my concerns to new and current doctors. I am so tired of being invalidated by other people and even myself about my illnesses. Being chronically ill is so mentally, physically, and emotionally draining.