On 2 May 2016, I posted on Facebook:
So what IS Systemic Lupus Erythematosus? (Yup, I totally did have to look up the spelling on that last word and I’m still not sure I’m pronouncing it correctly…)
SLE is a chronic, auto-immune, connective tissue disease that can affect any part of the body. It’s chronic, so once someone gets it, it never goes away, though it might have periods of activity (flares) and periods of remission. Auto-immune means that my immune system is unable to distinguish between the good cells and the bad, and so my immune system creates anti-bodies that attack healthy tissue. This causes inflammation, resulting in pain and damage, anywhere in the body.
This means that Lupus can look very different for different people. For me, it has, since I first became ill 15 years ago, included at different moments all of the following:
— extreme fatigue
— headaches
— joint pain
— muscle pain
— fevers
— anemia
— edema in my feet and hands
— malar rash (a butterfly shaped rash over my nose and cheeks)
— photosensitivity
— hair loss
— oral ulcers
— mild bone deformities
— carpal tunnel syndrome, trigger finger, and other tendonitises
— GI system involvement
— thyroid involvement
— foggy thoughts and memory problems
— depression and other mental health symptoms
— a number of other auto-immune disorders (Lupus acts as a gateway)
— frequent infections from virus, bacteria, fungus, etc.
— and NEW: shortness of breath and inability to do any excercise with my lungs being involved!
There are lots of Lupus symptoms I haven’t thus far experienced, like discoid skin lesions, and kidney involvement. You might know someone else who has Lupus, and we have almost no symptoms in common! That’s why diagnosis and treatment of Lupus can be so difficult. Check back tomorrow for more information about that!
(If you missed past days, you can always go look at my profile to check back.
š And feel free to ask me quesitons!)
For more info before tomorrow:
https://www.lupus.org/resources/what-is-lupus
All of the above is still true today, except I am doing exercise again, happily, and it is helping my lungs, as I mentioned yesterday. I can also add some things to the list, like costochondritis, which is an inflammation of the connective tissue between my ribs.
The autoimmune part is another reason why I’m self isolating during COVID-19. My immune system, if it becomes active in response to a virus like this, could start attacking all the organs in my body and I could face massive organ damage and/or failure. Also, in order to control Lupus, most medications to treat the disease directly suppress my immune system at some level. It’s not a good situation when facing a global pandemic!
Check back tomorrow for more.
Wondering what’s going on with these posts? Check out my explanation HERE!
This Isolation Life 