#lupusadvocate

[livingwithlupus614]

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 💜🦋

[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=

[chronically-bailey]

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

[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.

[thelupuslady]

Hey there! It's me. Your new friend. Whether you just found out you have lupus or another chronic illness, have had it forever or someone close to you..this is the place for you! A place to relate,maybe learn and not feel so alone. I share my life with you. I am 33(going on 85!), I have SLE, APS, fibromyalgia, POTS, von willebrands (this is genetic), ibs,herniated discs... among others! Currently being lazy about going to my lab at U of M(good ole UOFM) to be tested for autoimmune thyroid and autoimmune atrophic gastritis. As you read. I have alot going on. So Hey there new friends. Tell me about you?

[msbotalley]

💜ANNOUNCEMENT 💜 . TOMORROW SUNDAY MAY 17, 2020 Our nonprofit organization @ballingforlupusluvs will present its 1st Balling For Lupus Luvs Foundations VIRTUAL Insta-A-Thon, a digital event to help raise funds and awareness for families impacted by Lupus . This SUNDAY MAY 17, 2020 . 12noon- 8pm est . Please TUNE IN on this IG page @iammsbotalley. I WILL BE STREAMING LIVE from 12n-8pm est . Come meet some favorite celebrities Coaches, Players, Host and entertainment from the previous years . They will be coming on and helping us continue to spread lupus awareness . Please be sure to set your reminders because you don’t want to miss the first ever Balling for Lupus Luvs Charity Basketball Game virtual Insta-A-Thon . 💜💜 . #Lupus #LupusStrong #WeareInThisTogether #LupusMatters #LupusAwareness #lupuswarrior #lupusadvocate #b4LL #Ballingforlupusluvsfoundation #ballingforlupus #botalley #Wnba #Nba #Nfl #nhl #Atlanta #Dallas #losangeles (at Balling For Lupus Luvs Foundation) https://www.instagram.com/p/CAQ7y60n7FD/?igshid=1f3fzpd9bqvyl

[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.

[thebeautifullupie]

Morn-ting Beautiful Lupies💜💋, Spoonie Gang🤘🏼, & my Lovelies💕. Be great!!! 💜💋💜💋💜💋💜💋💜💋💜💋💜 #BeautifulLupie #SmileBeautiful #SpoonieGang #alldaytofindyou #youarenotalone #lupusadvocate #sle #ra #fms #cfs #pots #narcolepsy #invisibleillness #youdontlooksick #lupus #fibromyalgia #fucklupus https://www.instagram.com/p/B8ZNSbfnhHj/?igshid=x6q4q50oymw9

[lauralee47]

Lupus and Stress

[thelupusliar]

My #LUPUS Rant! I love 💜y’all but sometimes I just have to ‘flare-up’ about #self-care. This should always be considered when advocating! It’s not easy, but it’s worth it. #lupusadvocate #livingwithlupus #photosensitivity #believeinyourself #sunscreenforlife #learnaboutlupus

[livingwithlupus614]

The more you know 💜🦋

[heatherjpp13]

Infusion time for this Warrior 💪💪💪🙏🙏🙏💜💜💜 #TeamHeather #lupuswarrior💜 #lupusinfusions #benlystainfusion #Lupus #lupusanemia #LupusMom #lupuslungdisease #LupusNephritis #lupuseritematososistemico #lupusadvocate #lupusawareness #lupusblog #lupusambassador #lupusdoesntdefineme #lupusthroughtheyears (at Nyu Langone the Center for Musculoskeletal Care) https://www.instagram.com/p/CpsOse2ASDf/?igshid=NGJjMDIxMWI=

[chronically-bailey]

Hey everyone! Long time no post!

So we did find the gene causing my symptoms, its the ADCY5 gene on the 3q21 chromosome. It causes dyskinesia, dystonia, focal onset aware seizures, facial myokymia, and myoclonus, along with other symptoms that may or may not be associated (more research is needed). Essentially, the ADCY5 gene is responsible for turning ATP (adenosine triphosphate) the energy carrying cells to improperly convert it into CAMP (Cyclic adenosine monophosphate) the signals sent to your cells, causing my cells to receive those signals when not needed or to not receive the signals when needed.

It's both good news and bad news,

Good news is we finally know what it is and why my symptoms have been happening.

Bad news is that it's extremely rare, less than 400 people in the world have been accurately diagnosed with this disorder. So there is little research, no prognosis for the future and how that looks, and no set treatment plans. It's basically "fuck around and find out" for all of it.

I don't know if I'll be able to drive, if my symptoms will improve, stay the same, or get worse. It sucks, but it's all they've got.

They (my Dr's) are sending my to see a geneticist at the University of Washington in Seattle (luckily only 45 minutes to an hour away from my house) to see a doctor that specializes in this disorder to see if she can help with anything.

I'll keep you all updated,

Love y'all! ❤️

[learntolive-again]

Things not to say to a disabled person

Disclaimer; These are things that I personally hate people saying to me and that other disabled people have told me that they don’t like, but I can’t speak for everyone. Its possible some people may not mind some of these things as much. Just be respectful to people. Most of these things have been said to me, so I can say that they’re the most annoying things that people say to me. Also, most of these things apply to strangers, though they can apply to family and friends as well.

 “You’re too young to be sick!”

“You’re too young to have a cane/ wheelchair/ mobility aid of choice”

“You’re too young to have *disease*”

(Honestly just please don’t tell people that they’re “too young”. I hate this SO much.)

Similarly…

“You’re too pretty/ smart/ intelligent/ funny/ WHATEVER to have a disability!”

“Why do you need *enter mobility aid here*?”

“You weren’t using a cane yesterday.”

“What’s wrong with your hand/leg/arm/ whatever?”

“Have you ever tried meditating/ going vegan/ gluten free/ *supplement*?”

(This one may depend, but if you’re a stranger please don’t tell people how to manage their chronic illness or disability. Just don’t.)

“Oh, my *family member* has that and they’re fine.”

“At least you get good parking!”

“I don’t think I could deal with being disabled like that.”

“You look fine to me.”

“At least you don’t have something worse.”

Or

“At least you don’t have *enter other condition here*”

“I’m sorry this happened to you.”

“How are you still working?”

“You don’t LOOK disabled/ sick.”

Please feel free to add your own statements, I feel this is important to get out.

-Tarynn-

[thelupuslady]

Hair,hair,hair!

It's everywhere.

Every surface,every counter top.

It just won't stop!

My son pulls one of my hairs out his mouth while he eats his breakfast.

I wonder how long this hair loss will last!?

Ha..my little hair loss poem. But really hair loss is very common in autoimmunity. I am getting a balding spot on my temple. And just over all thinning. But heck. I can always get a cool head tattoo like I always wanted Hmmm. Who here has noticed hair loss?