Was recently dx with lupus cystitis they say it’s rare I live in Saint Louis near one of the world’s highly ranked hospital #BarnesJewishHospital and I’m the first case they’ve ever seen in person its when lupus attacks the bladder, I just recently finished a three day course of 3,000mg prednisone and my first dose of cytoxin chemotherapy it’s gotten off to a super rough start haven’t felt well enough to do much more #Fibromyalgia I’m tired but there’s still too much to fight for
Taking It One Day At A Time #chronicillnesswarrior
Today my battle has gotten more difficult. However I am a fighter and I am strong. I will face my trials with hope and bravery. With God by my side; I will not fail. I am blessed to be alive and breathing. No matter the circumstances- I am grateful. I am a fighter; I can and I will. I thank God for this life He has given me. My path may be more difficult than others, however I am a child of the mist high God. I am an overcomer! #Overcomer #childofgod #SystemicLupusErythematosus #LupusNephritis #ChronicIllness #InvisibleIllness #Lupus #AutoimmuneDisease #Chronicpainwarrior ##lupusawareness #chronicillnessawareness #nevergiveuphope #jesusismyrock ##mylupielife1987 #infiniteangel161 #miss8understood #icanandiwill #OPTIMIST #idealist #lonerwolf #lioness
You Have the Power to Inspire & Change the Lives of Others
TODAY I contacted our leader @nygovcuomo to ensure this is dealt with properly and stops happening, not just in NY, but across the country.
Today I Chose:
To Have Courage To Be Vulnerable And Authentic.
To Confidently Lead And Advocate For Not Just Myself But For Lives Of Others.
To Gracefully Use My Voice For Good.
I may look healthy to you but I am in the current “High Risk” population. Among several other diagnosis, I have Lupus. I’m one of many individuals that rely on the drug Plaquenil (Hydroxychloroquine) as part of my treatment to keep my disease under control. Currently this drug is being used as part of a promising treatment for COVID-19.
I agreed without hesitation to take less than a month’s supply, knowing there is a shortage at pharmacies across the country. I will try to take only half the dosage my treatment calls for in order to extend my supply and give someone else with COVID-19 a fighting chance to survive.
I will NOT tolerate the negligence of doctors around the country hoarding and unnecessarily prescribing this drug “just in case” to people they should not. This drug is still in the trial phases. It should only be prescribed for those who have tested positive for COVID-19 and need this treatment to survive. I’m thrilled there are now treatment options but there has to be a standard protocol set in place for who can prescribe this medication and when. This medication is already depleted from most pharmacies across the nation!
If we are in this together, then let’s start making choices that act accordingly. Stay Home Be Safe Wash your Hands & Keep Social Distancing. It will also save lives!
Currently struggling with fighting plans. my friend made plans for the weekend and I’m just in this funk. when my Lupus and depression hits home it really gets me down and sometimes it randomly happens. I don’t know how to explain that to a lot of people without them taking it personal. I’ve been missing my friend and looking forward to this time with her but now I’m just not feeling good. #
Standing Eight is a short film written, produced and starred in by Kazy Tauginas. His mother has suffered with Lupus for as long as he can remember. He created this film to honor his mother and raise awareness about this condition. The proceeds from the film go to help fund research at the Lupus Foundation of America.
It could just as easily been you
I was once you.
Name brand clothes.
I had the office. The title.
I did everything right.
And that's all you saw- what I brought to the table and could do for you.
Now. Here I am. Soul laid open, my struggles and perseverance for all to see and what are you worried about?
What you might have to do FOR me.
When did we stop SEEING people? When did we all become so selfish?
We shouldn't have to prove our worth like a resume.
Just remember when you are looking at me and worrying about things I can't control:
It could just as easily have been you.
#lupusawareness #LupusWarrior #Lupie #Lupus #ChronicIllness #ChronicFatigue #CFS #AutoimmuneDisease #autoimmune #autoimmuneawareness #spoonielife #Spoonie #lupiechick #lupielife #lupussupport #lupusfacts #lupusfighter #blogger #bloggerthoughts #TheMighty #Lupus