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With the new demands by emergency rooms to treat coronavirus patients with hydroxychloroquine, many of us are not receiving the medicine we have relied on to treat Lupus. We are working with national groups to find ways to help Lupus patients get their medicine. If you have a need, email details to firstname.lastname@example.org.
Nonprofit management consultant
Current conditions: Lupus nephritis, Sjogren's syndrome, avascular bone necrosis, hypothyroidism, bilateral below the knee amputations
What do you wish people understood about living with lupus? I wish that people understood that living well with Lupus is a choice! You can concede to the various aches and pains, doctors’ visits, and constantly taking medications, OR you can choose to do what you have to do and be grateful that you can. Living with Lupus is not easy, but it's not the end of the world either!
The hardest part about living with Lupus is that one day everything is fine and with no warning, you’re in bed struggling to get up to get your day started or clean up or cook or get out the door!
What helps you live more fully? My faith helps me live more fully because I’m grateful to be blessed to still be here. After numerous hospitalizations, surgeries, bed rest, and therapy, I can see the hand of God moving over my life. Also, having a strong and dependable support system makes things easier to deal with because I know they have my back.
What would you tell someone who's just been diagnosed with Lupus? What survivor tip will you give them?
I’d tell someone who has just been diagnosed with lupus that they need to follow doctor’s orders, but ask lots of questions when they need clarity on a procedure, medication, or additional diagnosis; get a caring support team (even if they are not a relative); and get connected to our support group.
My Lupus survivor tip is that it’s ok to be angry, sad, frustrated, or overwhelmed when living with this condition. When things aren’t going your way, you should yell, cry, scream, etc. to get it out . . . but only for a few minutes. You don’t want to prolong this negative feeling so that it takes over your outlook on your situation. Acknowledge it, confront it, and then move on!