LupusWarriors

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Testy Chapter

This time it’s been rough! Easiest way to put it. So now our good old pal lupus has decided to attack my bladder and it has been a spiral of craziness. It’s been 4 months since we have started treating the Lupus Cystitis with Chemo and higher doses of Prednisone 🥵 and it is takin a toll on me mentally and physically. I feel like the doctors are just kinda blindly treating me due to never actually treating a patient with it. MY BLADDER HURTS, STINGS,BURN, and ACHES all day long even more when going. After seeing how bad my bladder is they were gonna do a biopsy but decided it to big of a risk with it being so fragile so no biopsy but we do know it’s extremely inflamed and causing lots of pain on top of other things. I’ve had two hospital stays in back to back months a week and the other a week an a couple of days trying to control pain. Moon face is real( see above pic) I’ve gained so much weight and it’s only making things in life more hard then usual but it’s time to pull up my big girl undies and do what I gotta do #Lupus #warrior #LupusWarriors #sickandtired #CVID #LUPUSCycstits #tired #GottaKeepOnMovin #ItsOkNotToBeOk #HBP #SystemicLupusErythematosus #KidneyDisease #GERD #Fibromyalgia #Asthma #RaynaudsPhenomenon #BloodClots #ChronicBloodClots

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Moon Face #MoonFace #Lupus #Steroids #Prednisone #LupusCystits #Cheeks #lupusawareness #LupusWarriors #Pain #InvisibleIllness

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

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So many thoughts, so little headspace #overwhelmedbylife #ChronicPain #LupusWarrior

When I am being asked, how am I dealing with everything that is going on, how are you coping with chronic pain, how are you dealing with the changes? You have been so quiet lately... To be honest, I am really not, I am just so overwhelmed and tired of speaking into deaf ears, that I stopped talking about it

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So many thoughts, so little headspace #overwhelmedbylife #ChronicPain #LupusWarrior

When I am being asked, how am I dealing with everything that is going on, how are you coping with chronic pain, how are you dealing with the changes? You have been so quiet lately... To be honest, I am really not, I am just so overwhelmed and tired of speaking into deaf ears, that I stopped talking about it

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Feeling alone #lonely #sick #unsupportivefamily

This Monday I had surgery on my left breast to remove suspicious tissue to have it tested for breast cancer, I had have my mother in law to take me to surgery, because it was my husband's first day on a contract job. He never called, or texted to even check if I was ok and when he finally called to say he was coming home, all he did was talk about his new job 🙄 and it wasn't until, I asked him... Do you want to know how the surgery went? That he asked about it, he shows no concern, or compassion towards me for the past 3 days! I've been recuperating at home, he doesn't call me or text me to check on me, we have been together 10 years, I have lupus and he has always been kind of supportive, so I don't really know what to think! Is this a way of him dealing with it? Am I overreacting? Should I feel upset? Or just give him space? I am feel so alone and lost right now, please someone help! #LupusWarrior

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Feeling alone #lonely #sick #unsupportivefamily

This Monday I had surgery on my left breast to remove suspicious tissue to have it tested for breast cancer, I had have my mother in law to take me to surgery, because it was my husband's first day on a contract job. He never called, or texted to even check if I was ok and when he finally called to say he was coming home, all he did was talk about his new job 🙄 and it wasn't until, I asked him... Do you want to know how the surgery went? That he asked about it, he shows no concern, or compassion towards me for the past 3 days! I've been recuperating at home, he doesn't call me or text me to check on me, we have been together 10 years, I have lupus and he has always been kind of supportive, so I don't really know what to think! Is this a way of him dealing with it? Am I overreacting? Should I feel upset? Or just give him space? I am feel so alone and lost right now, please someone help! #LupusWarrior

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