#lupusnephritis

[heatherjpp13]

💜💜💜The road is long & heavy. We never give up. 🙏🙏🙏💪💪💪We get scared & worry about those we love. Our hearts are immensely filled with love with the hope of one day just not feeling one ounce of pain. It's our courage & commitment to our loved ones that keep us going as well as our determination to fight the disease that kills everything inside but not our WILL TO LIVE! These beginning months have been rough & only my close ones know.❤️ I thank you from the bottom of my heart for being there & continually being there. #TeamHeather #lupuswarrior💜 #lupusinfusions #LupusMom #lupuseritematososistemico #lupusanemia #benlysta #Lupus #lupusawareness #lupusambassador #lupuslife #lupusadvocate #lupusdoesntdefineme #LupusNephritis #lupusblog https://www.instagram.com/p/CpnlPOtAm9Y/?igshid=NGJjMDIxMWI=

[lupus-esque]

Hi warriors & hydroxychloroqueenz 💜

I figured that I would post about when I first got diagnosed w/ SLE.

I know I had symptoms way before being diagnosed, but it all made sense after the official diagnosis.

I was diagnosed with SLE in December of 2017; I was 18 years old. In my first semester of college all the way in FL when home was in NYC. I was losing my hair A LOT & I was super sleepy all the time. Eventually the hair loss got so bad and depressing that I flew out to NYC to find out what the hell was wrong with me. After countless blood work, urine tests, and doctor visits, I was finally diagnosed with Systemic Lupus Erythematosus (SLE).

I was so confused bc I only heard about Selena Gomez having lupus, so I did my research instead of crumbling into sadness; KNOWLEDGE IS POWER. I cut all my hair due to the crazy thinning I had and embraced the new me as well as took back my control.

This was the beginning of my Lupus journey, thanks for reading 💗

[erthalugod-blog]

Tom Baker Cancer Centre, Foothills Medical Centre, Calgary, Alberta Canada Chemo #12 of 12 It’s Meg’s last day of chemo today! Yay!!! Like a boxer hearing the final bell ring after Round 12, it sounds really sweet! 🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔🔔 To all our family, friends, colleagues, her doctors, nurses, allied health workers (and even strangers!) who prayed for her, wished us well and checked on us now and then, we THANK YOU ALL for making her cancer journey a little easier. We give all the glory and praise to our faithful and merciful God! 🙏🙏🙏 #Stage4HodgkinsLymphoma #LupusNephritis #llscanada (at Tom Baker Cancer Centre) https://www.instagram.com/p/CgXZgwKPEIK/?igshid=NGJjMDIxMWI=

[grogu22]

Possible kidney transplant..

Checked in at hospital. Blood draws, x-rays ekg. Lots of medical history talk. We are hopeful but expecting anything. He has been turned down many times. But this is the closest he has ever been.

[brytay1982]

Posted @withregram • @leadingladiesrva 💜Join Leading Ladies RVA on Facebook Live at 6pm today for an amazing live health workshop! May is Lupus Awareness Month! We have partnered with @sclgpi to present “Let’s Talk About Lupus Nephritis!” Enjoy a live presentation by Dr. Alvin Wells, Rheumatologist and panel discussion with community leaders Mrs. Cathelean Steale & Marques Payne @theyezofgarvey. 🗓Tuesday, May 10 ⏰ 6:00-7:30pm Register to be entree to win Giveaways from @mytrendventure & paperback copy of “I Will Be Well Again": A Donors Guide to Spiritual Giving by Iris Mack @gardencbc6100. Free fitness demonstration with the amazing @_fitisthemotive! Link in Bio to register for this free event (appreciated but not required). #lupus #lupusawareness #lupusawarenessmonth #lupusnephritis #leadingladiesrva #facebooklive #menshealth #womenshealth #childrenshealth #facebooklive https://www.instagram.com/p/CdYczFULem6/?igshid=NGJjMDIxMWI=

[teenytinytinainfinitely]

Every day I’m feeling stronger & stronger. I finally had a port placed on Thursday due to my small veins not being able to be accessed any longer and forming blood clots in both arms. My water retention is still crazy hip down but my symptoms are slowly improving daily and that’s what my focus is on. We’re all trying our best to get through this by leaning on each other & I’m extremely grateful for our community. Thank you everyone for sending light our way.. it’s felt, accepted, and appreciated more than @myfriendscallmelu and I can say ✨💜 #teenytinytinavslupus #fwiwy #lupusawareness #lupus #lupusnephritis (at Sharp Memorial Hospital) https://www.instagram.com/p/CdTEy-NLtoL/?igshid=NGJjMDIxMWI=

[desroundtree]

Words - Spoken and Written

My muscles feel it, the normal heaviness that accompanies any movement from point A to point B. My spirit usually tries to finds a way to feel light, to strive for a certain levity that is associated with happiness and laughter floating on breezes. Lately, there is no finding that space. It’s lost with all the tears I’ve shed, the time that’s gone and the memories I don’t have the energy to make.

I have been really sick for the last six weeks. Sicker than I have been during the pandemic which was  pretty bad to begin with. The constant stress had all of my conditions in constant flare meaning everything I have is working overtime to make me feel like complete shit. During these six weeks it has been nothing but paranoia, fear and to be honest unexplained illness. Aggressive symptoms and inflammation, extremely precarious mental health and emotional feelings, everything being more than it needs to be. Ever.

Eventually, weeks after an ER visit I was diagnosed with bilateral pleural effusions as well as pericarditis - two conditions typical for Lupus patients when the disease is active.

I am still under treatment. Why? Because I’m still experiencing symptoms of pericarditis (tachycardia meaning an elevated heart rate for no real reason), my lungs still don’t feel right on the left side where the pleural effusion was worse. Still trying to figure out exactly why this disease is doing its best to make me feel my worst. It’s obvious the pandemic hasn’t helped, stress does nothing but aggravate autoimmune conditions and since I have a slew of them I have been sick everyday since last year. Even with the walks, even with the meditation, even with the naps and baths and different therapies. Even with all of the positive things I’ve done to try to alleviate my symptoms or help myself, I have failed.

I still don’t feel well and my body is showing me that I am right. My kidneys continue to struggle, so much so that even a high dosage of oral steroids wasn’t enough to stop my feet from swelling to two times their size. An emergency IV infusion of steroids was necessary to stop whatever the Lupus was attempting to do to my organs. It’s scary as it always is and shows me once again how close my mortality is. Closer than yours is even with Covid out there in the world.

Covid just makes my experience all the more scary: because I can do all the things but needing other people to do the things has been a huge disappointment. All the other things that aren’t easy for me either. But I do them. It’s weird how I feel the responsibility to my family, and even further than that, to everyone else, to do what just feels like the right thing. 

I am worried. It makes sense for me to be worried as my heart and lungs are pretty important and Lupus changing their functionality is just beyond my realm of comprehension. My kidney issues, even the anxiety and depression are things that felt almost like a morbid rite of passage, most Lupus patients have kidney issues, most suffer with issues surrounding their mortality, most have issues with acceptance of loss. We struggle, and it’s not just physically.

I wanted to write because I have felt stuck in a way that felt suffocating. My words have felt like they’ve been trapped in my heart, my mouth, and on my fingertips. I’ve spoken more on Instagram because it has felt comfortable there and authentic. At least my frustration, sadness, anger and of course my happiness too - is on display in a way that just feels right. 

Writing on the other hand felt preachy as I described it to a close friend. Writing about my illness has never felt forced or like a chore. Yet, I felt like no one wanted to hear this story over and over again. No one wanted to read my words that express pain and things they don’t understand. Things they too are afraid of for me and because of me. Writing about my disappointment feels old but also feels like something that I need to do for me, regardless of what people really want to read.

It’s strange. It became a love hate relationship with writing the words but not speaking them.

I’ve found that I needed to understand how I really felt about what was happening to me before I could put the words in on paper, for the world to read. Even though it’s real to me, it feels real when I write it, as real as it did when I spoke it. Maybe I was the one that lost the interest in my written word, I'll never know. Right now, communication is what feels right and whatever way it takes for me to get there is the path I am willing to walk. 

[sweet---potato]

Frustrations Abound

Why does today feel like I'm walking on a tightrope? As if the gentlest breeze could tip me off balance headfirst into a vast unknown that I know I am not ready for. 

I love my job, my family, friends; I value where I am now in life. But I feel restless inside. I am half hoping that the gentle breeze would finally come. I want to be propelled somewhere else, where I could leave everything behind and not worry about looking back, even if it means I'd have to start from scratch.

I guess this is the fatigue from long tedious hours of work talking. That, plus the gnawing anxiety that has been bubbling in my chest for a month now. It has not been too long, only four months since I have been baptised into the world of earning adults. I will be turning 30 next month but I can't help but feel lacking compared to my friends who have been earning since graduating from college almost a decade ago, whereas I have received my first salary just last November.

To add more fuel to my misery, my salary has been delayed for nearly two months now. Behold the culture of incompetence within our government. What is it to them anyway if their doctors don't get their salaries on time? This or that person failed to sign this or that contract because they are out of town (didn't they assign a proxy?), this or that document needed to be passed as soon as possible (we distinctly remember passing our biodatas and TORs last year, are you telling us you misplaced it?), PRC IDs needed to be updated (come on, we just got our license five months ago, there is no way it needs to be updated). Everyday they would give us a fresh excuse, although it fools no one, not even themselves. Like I said, utter mediocrity which everyone turns a blind eye to. Something that we in healthcare cannot afford to do. Could you imagine if we were as uncaring as those people who do nothing but sit comfortably behind their desks all day? Patients would die, and that would be a catastrophe. 

I worry that if my salary does not come by next week, my carefully constructed financial plan would come crashing as hard as the recent stockmarket drop due to the covid-19.

There is not much room for adjustment in my budget. I cannot afford a set back because I have bills to pay, medicines to buy, a stock portfolio to build, an emergency fund to birth, a credit score to strengthen. This need to secure my financial future is so strong that it is gripping the very air I breathe. Because I fear, I worry. I. Am. Afraid.

Of what, you might ask? I am afraid that I would run out of time. What if this robust body that I am currently enjoying would only last for a few years? I know it would only take one single flare to set into motion my inevitable date with hemodialysis. Lupus is a part of me now, whether I like it or not. And that means nothing in my life will ever be certain. The three years of chemotherapy I have gone through would not be enough to silence it forever. From here on, it will be a waiting game, albeit a rather deadly one.

[cariposa1990]

So it's Thanksgiving morning and I haven’t started cooking and I actually wont till like around twelve. We aren't having a lot of people over I think if much it'll be like eight of us, so we aren't making much or should say I'm not making much. I think I mention it in my last post, this is the first year I am making Thanksgiving dinner alone I told my mom I would take care of it. I'm actually looking forward to it.

So there is that and am grateful and blessed but can't help to feel a dark gloomy cloud over me.

I was thinking about my siblings this morning, like how we are all spending today with our families well obviously my family is theirs but I mean my sister it’s her first official thanksgiving as a newlywed and my brother with the new baby. So it's all nice and I’m super happy for them it;s a year of many firsts. But in thinking of them I also started thinking of how my surgery is this upcoming tuesday.

Now I know today is not the day to be thinking of that but I mean shit just pops up it's not like I was like, oh let me think of this today and feel some type of way.

The way my siblings come into this is because I still haven't told them. I usually don't tell them till like a day or two beforehand. I don't like to worry them and I don't know, I don't really like answering questions sometimes mainly because I don't know how to talk to them without giving away that I am scared shitless.

But in thinking of them and everything that is going on I dont know it kinda started hiting me that oh fuck I’m havning surgery in four days, and yes I know its not major surgery and that this is basiaclly a routine procedure.

I don't know if I mentioned before what am getting done but it's a second surgery to bring up my fistula because the first one went well but the doctors are saying that its to deep and when its actually time to use it, it would be hard to access. So they are going to go back in and bring it up more. Right now I have it like on the inside of my elbow the second one will be more up by my bicep. The doctor said it would be a good size scar I'm like at this point I don't think my scars really bother me anymore. But there is always that fear of going completely under. Like what if I don't wake up what if something happens? see I have such a twisted sense of things that I’m like will any of that even matter? Like if I die ok I die, I mean it's not like I can put in a complaint or fill out a suggestion form. Da hell I'll be dead not giving a shit. at least I hope I won't be one of those vengeful ghosts just haunting people and stuff. Even though I always joke around and tell my friends I will be coming back to mess with them. But see being rational and thinking about it, truth be told what does it matter? Once you go under nothing matters for that amount of time that you're out. Still I think it's normal to feel the way that I do at moments I get scared and others I’m like its okay everything will be fine. What always scares me the most is waking up and the pain, the fact that I’ve had nurses tell me oh it's not that bad I don't know why you're hurting so much. Like I get it you see a lot of these procedures done and most of them are pretty much the same but unless you know my medical history or my tolerance of how much pain I can handle or how my body reacts to pain I don't really think it's your place to downplay or comment on my pain or how I’m reacting. I guess what's also scary from all this is the fact that they are doing surgery with your veins and arteries, this shIt makes you think like what if something happens? I guess that’s the whole point of this entry the “what if’s” I guess this is where I need to walk by faith and leave my fears and worries in God’s hands. I will...eventually. As the day nears I will either drive myself more crazy or accept that everything will be ok. Well beautiful human thank you for reading a crazy girls thoughts today. What scares you? Do you have any fears? Or what makes you nervous? Blessings and light always sent your way

[szarnyaslany]

Last one!!! Suck it, lupus! . . . #lupuswarrior #lupusnephritis #imactuallyfeelingawful #thissucksass

[heatherjpp13]

Yes, I do!I try my best!!!👊👊👊🙏🙏💪💪💪 #TeamHeather #lupuslungdisease #lupusanemia #lupusinfusions #lupuswarrior💜 #Lupus #LupusNephritis #LupusMom #lupusawareness #lupusawareness #lupuseritematososistemico #lupusambassador #lupusblog #lupusdoesntdefineme #lupusthroughtheyears https://www.instagram.com/p/CpxsWQ1gqUm/?igshid=NGJjMDIxMWI=

[lupus-esque]

Hi there hunniez 🥰

Today I wanted to share part one of my prednisone journey since my diagnosis.

Tumblr did a weird thing when I added text box’s to my photos, so I hope you guys can read it well 😬 sorry….

Anyways, I’m a petite girl. I am 4’9” and at the time of my diagnosis I was probably 118 lbs. that was my normal. The heaviest prednisone made me was 127 lbs in 2019. Overall, mostly my face was what looked round. “Moon face” they call it 🙄, but I say “chipmunk cheeks” 🐿

Obviously the more steroids I’m on, the more water weight my face retains. That’s why I HATED when I would flare up again; and the flares were always dramatic 😐

The less steroids or none at all had me back to seeing a jawline, which always made me happy. I really don’t think I’m vein, but have always been small and fit, and seeing my face plump up was definitely an insecurity of MINE. We all have insecurities and loving myself through the prednisone process is something I always struggled with. Even as I type this on 24 mg of prednisone, I have to keep reminding myself that I am beautiful despite what this steroid’s side effects may cause. It’s super hard though at times, don’t get me wrong.

I’m looking forward to being tapered off of prednisone fully. Aside from the weight gain, it’s long term effects can be very damaging ☹️ (osteoporosis). So, hopefully the Lupus calms TF down so ya girl can have a jawline and strong bones 🤣🤣🥲

Love u hydroxychloroqueenz & enjoy those photos of my weight fluctuating faces from 2017-present 💜

[erthalugod-blog]

Tom Baker Cancer Centre Calgary, Alberta Canada Chemo #6 of 12. We are halfway there! Meg’s last blood test showed she’s in “complete metabolic reaction” to the chemo (Yay!) so one of the 4 chemo drugs she’s receiving was stopped by her oncologist. The repeat PET Scan also showed improvement so we are hopeful that she won’t need a second 12 rounds of chemo. 🤞🤞 #Stage4HodgkinsLymphoma #LupusNephritis #llscanada (at Tom Baker Cancer Centre) https://www.instagram.com/p/Ccs6qfdJhF3/?igshid=NGJjMDIxMWI=

[penelopebarbalios]

GUYS, this is the cutest #spoonie necklace in the whole wide world that @treats_by_jazz made me!! I'm so happy cause somedays I'm all outta #spoons but now I'll have one extra spare jic <3 <3 <3 you can get one too at @theimagegalleryoftroy in #DowntownTroy to help support #lupusawareness Were next to #AquiloniaComics & across the st from #Shalimar :) #enjoytroy #troyny #spoontheory #butyoudontlooksick #lupussucks #lupus #sle #discoidlupus #systemiclupuserythematosus #systemiclupus #lupusnephritis #autoimmunedisease #chronicillness #chronicpain #mentalhealth #mentalillness #depression #anxiety #bipolardisorder #selflove #selfcare