#lupusadvocate

[thelupuslady]

*SMAK*💜

[livingwithlupus614]

Selena Was Forced To Explain To Body-Shamers That She’s Gained Weight Because Of Her Lupus Medication

“just the idea of bodyshaming a woman who has to fight & deal with an autoimmune disease and take proper medication... like some people are

Weight gain is a known possible side effect of some lupus medications, especially Prednisone. I take prednisone daily and have the notorious “moon face” that this medication is known to cause, which can really affect my self-esteem sometimes. This poor woman has the world bullying her over an unavoidable consequence of the meds she takes to keep herself alive and that is despicable. I am grateful that Selena Gomez uses her platform to spread awareness about lupus, so it really hurts my heart to see her getting picked for her weight, especially since it comes from her taking care of her health by taking her meds 💜🦋

[chronically-bailey]

Compression socks??? Are fantastic?? Why did it take me so long to get a pair?!

[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=

[brokensamurai1]

May is mental health awareness month but also lupus awareness month. Lupus, SLE, or Systemic Lupus Erythematosus is an autoimmune disease that has no cure. It is a disease where your immune system attacks the rest of the body. In its most severe states it needs to be treated with treatments usually used for cancer patients. It can go into remission but symptoms can flare with a vengeance and be so severe the patient ends up bedridden. It affects women more commonly than men and affects about 5 million people world wide but there is no specific test or symptoms to diagnose it. Some symptoms can be kidney failure, rashes, arthritis, hair loss, and even seizures. People can go years without a diagnosis and while patients can live a relatively normal life it is not without major complications. Most patients cannot spend long in the sun or else they can experience skin lesions and rashes. The most common rash is known as the butterfly rash which is most commonly on the face but can appear in other areas as well. I just wanted to bring a little awareness as this disease as it hits close to home because my mom has it. The more known it is the more funding and research we can get to hopefully someday find a cure.

[learntolive-again]

I am NOT obligated to tell you why I'm using a cane.

And you do NOT have the right to get mad at me when I choose not to answer you.

Thanks. Carry on.

[courtorderedcake]

I really love Hallow. You are wonderful writer. I can’t wait to see how the rest of the story goes. How many chapters will there be? I hope you are doing ok.

I totally forgot to make an announcement on this. Blaming it on my stress levels!

In 2017 I had an amazing job, my husband and I were finally getting ahead, my boys were best friends and in day care - life was good.

On a bright summer day I painted a wardrobe for my son's nursery, and I noticed that my right arm was very sore, cramping all the way from my shoulder to fingertips. I assumed that I had pinched a nerve and went about my day. The next day I went to the post office to by stamps for postcards I was mailing for my Trafficking Survivor's group. My hand and fingers were unable to move, the tremors so bad that the postal clerk had to apply the postage.

This started a downhill progression in my health that turned into extreme fatigue, muscle weakness, joint destruction, loss of eye sight, and cognitive issues.

I was diagnosed with SLE (Lupus) and Fibromyalgia after almost 2 years of testing, pain, and the loss of everything I had built for myself. It's hard to do a database and warranty administration job with tiny numbers that must be exact when your brain is not working properly, you can't see, or you can see but the strain from seeing triggers an explosive migraine.

It was like going from 0 to 100 - I am still learning my limits, my pain, my triggers, and how to do things that I took for granted. Writing? In blocks of time, or pain. Coding? Depends on my hand strength and stiffness for the day. Talking on the phone or video chatting? Generally no, the noise is awful. Being in the sunshine? Once my favorite thing, now can knock me out for a week. Activities I loved? Most likely unable to be done.

It's also frustrating because I know my cognitive behavior is suffering, and watching it is so fucking frustrating. There are times I can't talk because of slurred speech, or I'm too tired, or I just forget entire chunks of time - and I know. I'm trapped watching myself decline, realizing that what I once counted on and curated is deteriorating; that one day my fixes won't be able to stop what is happening.

A recent MRI showed that my brain is being attacked, and my doctor has determined that my kidneys, liver, and eyes (everything on my head, really, my teeth/sinus/ears/skin have drastically worsened) are in the process of attack.

This is to say that writing is incredibly difficult right now, but I am pushing through. I am going to do every other week for updates on Hallow - It gives me time to write what is still missing, edit without stress, and to rest my eyes more from typing. I know y'all will understand.

Stay awesome bbys.

[thelupuslady]