Lupus Nephritis

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I'm new here!

Hi, my name is Djjohnson1410. I'm here because I am living with lupus and I’m barely able to walk or move my joints swell up all the time my doctor finally has me on infusions but they don’t seem to be helping and I’m wondering if anyone else has came up with something that has helped them

#MightyTogether #LupusNephritis #Lupus

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Grieving what will never be.

I’m so tired. I found out a few days ago that I cannot have children, I cannot get pregnant and carry a baby to term, let alone safely.
I have Lupus nephritis- lupus in my kidneys. I have anti-phospholipid antibodies syndrome, infertility is a major symptom of this condition too.
You kind of need healthy, functional kidneys to have a baby, and have blood that functions normally or at least efficiently enough- to carry a baby. I have neither.
People have been telling me “well you can always adopt!” But that’s not the point. Besides, I was adopted when I was a baby. I’ve battled with the difficulty of being adopted- I couldn’t adopt a kid to build my family as I couldn’t help them cope with their experiences when I can barely do the same for myself.
It doesn’t replace the fact that I feel so empty, knowing that I should be able to have a pregnancy. Every other woman on the planet is able to have a baby. Almost every woman on this planet has functioning organs and blood at the very least. I feel like I have failed in every single aspect of life a human could fail in. And on another stupid note, who on earth would want to marry an infertile, chronically ill, medically fragile women?! No one. Or at least not anyone who would fit my standards of basic human decency. I’ve been too disappointed by men who’ve tried to take advantage of me for those reasons.
I’m broken on a cellular level, my organs are broken, my mental health is broken… and now the one thing I was counting on, to complete in my life as a women? I am broken there too. I’m a failure of a woman, and a human. How do you move on in life when your future is wrecked in every single way possible, and it’s set in stone? Every option is awful and I’m so so tired of all of this. #Lupus #LupusNephritis #SystemicLupus #AntiphospholipidSyndrome #Infertility #autoimune #Vasculitis #MentalHealth #Anxiety #Depression #PTSD #Grief #advisemeplease

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Tips for Upset Stomach

Hi guys! Ive been on the same meds for 3 years and now im pretty sure they are causing me mild indegestion. Ive talked to my doctors and they agree that its probably my meds. Does anyone have any tips to aleviate a tummy ache? #ChronicIllness #Lupus #LupusNephritis

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I hate prednisone

So I was on a pretty heafty dose of prednisone last year during the summer die to my Lupus. I had very limited mobility and it was overall a pretty terrible experience.
Anyway- I ended up gaining a lot of weight very quickly, and it’s become very difficult to loose.

I used to be 190LBS, I’m 5’6, with broad shoulders. So I looked pretty healthy, and I was very confident and proud of myself!

But because of my Lupus and medications like prednisone, I’m now 235LBS and I just feel awful. It seems like the prednisone has made it so much harder to loose weight., even thought I have stoped taking it months ago!
I’ve been dealing with depression and anxiety, as well as overall crippling fatigue- people, including doctors- keep telling me “just get moving! Go on walks! Eat healthy! Don’t eat processed foods!” But they seem to forget I struggle with chronic pain, horrible fatigue, exercise and heat intolerance and an overall lack of good days.

So how on earth am I supposed to loose weight? So I can feel better about myself again? I’m loosing hope with it, and I just feel so lost and lonely and exhausted. I’m not flailing anymore,so why do I feel so bad?

Chronic illness is becoming too much for me.
#Lupus #LupusNephritis #SystemicLupus #SystemicLupusErythematosus #ChronicFatigue #ChronicPain #KidneyDisease #AntiphospholipidSyndrome #Vasculitis #Depression #Anxiety #Prednisone #CheckInWithMe #PTSD

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Recent Little Joy

I just wanted to share on here a positive thing today. I'm 18 years old and a college student and walking all around my campus can be killer on my joints. I commute but the parking is always insanely full by the time I get on campus so I devised a solution. About a month ago I applied for and recieved a disability parking placard. This has done wonders for me. The spots are always open all over campus and I can park in between my classes rather than far away from one or the other. It feels weird to be a young person with an invisible disability climbing out of my car next to people who side by side look "more disabled" than me. Sometimes I feel like im taking a spot away from someone who actualy needs it. Ive been trying to remember that I AM someone who actually needs it. It's ok to need accomodations big or small. #LupusNephritis #Arthritis #ChronicIllness

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Bed-lysta

Last week I slept more than I have in years. Part of me enjoyed the sleep, because I have diagnosed insomnia and the other part of me was frustrated. The problem was that despite taking naps multiple times “last week” I still was sleeping 9-10 every night. Thankfully I work in the evenings, but this also cut time for me doing school work and other fun activities. The only thing I can think of was that this is either my reaction to Benlysta which in the past only lasted a day OR the fact that I had leakage with last weeks injection. It also made me think, was I always this tired prior to Benlysta and now Bed-lysta is allowing me to sleep? My insomnia is related to my kidneys/lupus, but I honestly don’t know.

Nevertheless, today is my rest day, because I took Benlysta last night. This morning I woke up way early and I didn’t even nap yesterday. I’ll probably take a nap today though. I slept maybe 6 hours? So far, knock on wood, this is the first time after an injection I am not feeling nauseated, overly sleepy, and don’t have a headache. There’s of course many hours left in the day so time will tell.
Side note: My blood pressure is no longer MY normal, but textbook normal; I also lost 1 pound.
Happy Friday all!
#Lupus #LupusNephritis

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Benlysta Update 2

Just a quick update before I take my second injection tonight.

I’ve been feeling pretty good, definitely more energy and less pain than my normal for this time of year. The one thing I have noticed is less urgency to urinate especially at night, despite drinking the same amount of water, but no additional weight and pressure has stayed consistent.

Yesterday I did however start feeling fatigued/drained and my back started hurting again. Not sure if it wore off or if it’s this weather (it’s terrible here); my eyes hurt too. Taking every positive and negative with a grain of salt.

I’m currently debating if I should inject earlier tonight than I did last week, so I can hopefully sleep through any medication symptoms. We shall see..
#Lupus #LupusNephritis #SystemicLupusErythematosus

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Benlysta Update

Long ago, many years ago, I was told by a nurse I should document my journey. I took her half seriously, but did create journal entries back when LiveJournal was a thing. This is my story, so I can remember my Benlysta journey.

The morning after my first injection I woke up feeling off and almost sick, but not viral-type sick. The only thing I can think to describe it as is when people told me about their Covid vaccines immune responses. Mild and tolerable. (Personally my Covid vaccine immune responses was extreme). I sipped on my iced coffee (my normal routine), but as the morning went on I had very little energy and felt very nauseated. I tried to sip on cold water and it helped a little. I got to the point of almost vomiting, but thankfully, I had anti-nausea medication.
I’m not sure what time it was at this point, medication worked, but I was 0% hungry and very fatigued (sleepy). I actually have diagnosed medically induced insomnia, so I can only assume the sleepiness is from the Benlysta. I laid in bed, had the only thing I could think of that I had a taste for (mashed potatoes and gravy) and then took a 2 hour nap; I let myself sleep until I woke up.
I never nap, despite my normal Lupus fatigue, so honestly it was nice waking up refreshed. When I woke up, maybe around 4PM, I just relaxed more, really had no energy other than to sit on the couch. My husband made me another bowl of mashed and I continued to drink water. We played some old Atari games and a board game. Around 11PM I actually became hungry and ate a snack.
Today I woke up feeling different, I felt like I slept, like I could walk, and have no feeling of being “sick”. I’m actually making soup for my family shortly and feel energetic at least compared to my norm.
I’m hoping with each injection there is less day 1 nausea/fatigue, but even if not, I’ll take those symptoms just to feel like I am now. I feel like my eyes are fully open for the first time and not sluggish. Was it the nap my body had to take or is it the medication working? Tomorrow we will see. #Lupus #LupusNephritis #SystemicLupusErythematosus

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