Lupus Never Looked So Good

All my spoons are in all the right places, if you know what I'm talkin' about...

[candystrippers-deactivated20190]

In this podcast, two long distance friends take turns teaching each other about their geeky interests and their queer, feminist experiences living in the world of nerd culture. Join us as we discuss nerd topics such as video games, tabletop gaming, anime, sci-fi, and fantasy as well as personal topics such as sexuality, growing up awkward, mental health, and our love for one another.

[candystrippers-deactivated20190]

[itwaslupus]

I know I've been a bad blogger, but if Y'all are still around and want to listen to a good gay nerds podcast featuring me and my girl Avalon, please click click! 

[itwaslupus]

Hi my name is Beverly, what do you know about Glutathione,and does it work on lupus,

Glutathione levels are great way to test how severe your Lupus is, but honestly the research is very lacking on whether or not it would be an effective treatment for Lupus patients.  Most of the positive praise for it come directly from the manufacturers themselves which always makes me nervous.  I would say to ask your Rheumatologist to see if they have any more info. 

[itwaslupus]

Are you able to maintain steady work/employment with Lupus? If so does your employer know you have it or do you keep that information to yourself?

I ALWAYS tell my employers about it upfront.  I need them to be aware so that when things get rough, I’m not going “SURPRISE, FIGURE IT OUT HAHA” to the people I work with.  I love my coworkers and my job so I need them to be aware of what’s going on with me so that we can all be better prepared for it.  

So, if I’m thinking I feel symptoms acting up, or I’m getting something tested, I always keep them updated in case that little something becomes a BIG something.  

A lot of my Lupus friends do not keep traditional “steady” jobs, but do things like Freelance work or independent contracting so they can have more direct control over their hours worked.  I’ve dabbled in that, but actually find that steady work keeps some of my symptoms at bay. 

[itwaslupus]

Someone I work with is, I believe, lying about having lupus

It's such an odd thing to do, and while I have no proof of this... Just about everything she says about her "condition" is ludicrous. When she found out I had it, she offered to "give me her extra plaquenil". Then recently she "fractured" her ankle and came in two days later completely fine. This just lends to support my idea that she uses lies about her health to... I don't know... Get attention I guess? Get out of work? It... Makes me feel extra strange. It's not something I've ever encountered. And it makes me keep even more quiet than usual about my actual lupus. I think because I can tell that everyone else knows she's faking it and I don't want to be associated with that weirdness. Anyone else ever experience something like this? It's... Ugh...

[itwaslupus]

We need to be more honest and open with our doctors, especially. If they don't know what's happening, they can't help us. =(

[itwaslupus]

YOU Go University of Toronto! People with lupus have an elevated risk for coronary artery disease, and our current screening methods don't really take that into account. But now, they might!

[itwaslupus]

A workshop based in South Dakota intended to help people with chronic pain learn to cope and thrive despite their pain. Most Importantly, providing a support system. I love it!

[itwaslupus]

Hotel is booked for spwf! I am so excited I could cry =)

[coolthingoftheday]

[itwaslupus]

So I got diagnosed with Drug Induced Lupus back in February, when the symptoms weren't gone by June, they changed my diagnosis to Systemic Lupus. Your tumblr has helped me feel less alone. I guess this is more of a thank you than an ask.

I'm so sorry, to you and everyone I abandoned for a year by completely falling off the blog wagon. I'm going to try to put more effort back in. =) thank you so much

[steampunk-divas]

Steampunk

[itwaslupus]

Warm weather... Come back to me quickly so I can get back to the playground. This is my bliss.

[itwaslupus]

Playground pole chose me.

[itwaslupus]

I'm about to apply to perform at this year's event as a pole dancer. I'm anxious and nervous and excited! Fingers crossed for me please!

[itwaslupus]

I was diagnosed with Discoid lupus when I was 14 and I have had these red, sometimes flaky rashes in the shape of circles on my cheeks and nose ever since. I am 18 now and my doctor says that they are scars. I was wondering if you have ever had these type of scars and healed them.

I wish =( my scars are on my arms, from the discoid rashes I had during my first flare up. They have faded with time but are never really going to go away. It sucks, but now they're as much a part of me as anything else!

[itwaslupus]

Good Evening Dear Lady, I was perusing the internet for a concussion support group of sorts and stumbled upon you and needed to tell you, you're wonderful. So thank you, for existing. -A

Aww I wish I knew who you are! Thanks kindly stranger!

[itwaslupus]

Hey there, I've got chronic back pain and OCD/depression arted looking into support communities for people with chronic pain/illnesses. As a person who has been in drug recovery for over 10 years, I know how support groups, such as AA/NA can tend to get toxic very quickly. I was very disappointed to see that most of the pain communities i found were the same way and completely agree with you re: spoon theory. I was hoping you knew of a community that was different, less pity, more hope?

I will always say, try the Chronically Awesome foundation. They have a support group that meets entirely online and the entire point is to be positive, encouraging, supportive... And we laugh a lot =p