Just a Girl and Her Fucked Up Immune System

I'm a college student with Mixed Connective Tissue Disease, an autoimmune condition that's pretty much Lupus without the "House" jokes. This blog deals with the day-to-day frustrations of this chronic illness. Disclaimers: 1) This is a touchy and sometimes tragic subject, but for me laughter is good therapy. If it isn't for you, just ignore me, I won't mind (My posts are tagged "theissueswithautoimmune" for ease of blacklisting). 2) I swear a lot. Be warned. 3) Autoimmune conditions affect everyone in different ways--this is the stuff I experience. If you have an observation about autoimmune life you want me to address, feel free to drop me a line!

[soalsoandmoreover]

Alex Nolan: Lights, Camera, Lupus!

We are devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact.

I was a guest blogger for the Lupus Foundation of America!

It was cool to write about my experiences with Lupus, and it’s been even cooler to work with the Foundation as a video intern over the last few weeks.

(Also, note the End Times mention!)

Check it out!!!

[theissueswithautoimmune]

I wrote a post for the Lupus Foundation of America!!! In a shocking twist, you’re not allowed to swear on the page, so my go-to description of Lupus as “pretty fucked up” is missing. WTF, right? ;-)

[youhavelupus]

Has your Rheumy ever put you on plaquenil (hcq)? If so what was your experience with it?

Hello, Anon, no I haven’t! I’ve had a hell of a time trying to decide what extensive treatment I’m willing to commit to…thus my long, tumultuous relationship with steroids. I started methotrexate when I was nineteen or twenty, but was taken off of it after I contracted severe bronchitis twice. After which, it never worked as well for me :/

 Plaquenil tends to be treatment for when other things don’t do the job, so I have no doubt it will pop up in my future somewhere. I’m sure there are other spoonies who are on plaquenil, though, so if you are, please submit/reblog your experiences! 

Love & Heating Pads,

Sarah   

[theissueswithautoimmune]

I’ve been on plaquenil for five years, as a constant among various fluctuations of methotrexate and prednisone. As such, I haven’t had much experience with plaquenil on its own, but most of the side effects I’ve had can be chalked up to one of those other culprits, so it seems fine to me. All that seems to happen when I’m on just plaquenil is that I flare, though never as badly as when I’m not on plaquenil.

So, doing its job without many side effects but not highly effective, would be my personal experience.

[theissueswithautoimmune]

Hey guys, FYI--as always, I’m sorry to not be around so frequently, but finally one of the reasons I’m not around is relevant!!! (although I’d argue that End Times’ themes of chronic illness make it relevant ;-) [link])

I’m lucky enough to be interning with the Lupus Foundation of America right now, and just finished up a two day advocacy event on Capitol Hill! I wanted to thank everyone there that made it such a great first internship experience for me, foundation members and advocates alike, and all the reps we met with for their support (right...?).

In the meantime, I’ve been tweeting about the event here [link] and hopefully will continue to be tweeting throughout my internship experience!!

As usual, I’m afraid, blog on hiatus, but feel free to send in questions or just let me know how you’re doing. I’d love to hear from you.

(and who knows... maybe this new greater level of involvement with the autoimmune community will give me an excuse to take the time away from Mad Manatee Productions again and start back up. We’ll see.)

[theissueswithautoimmune]

Is there a way to get diagnosed with Raynouds?

Hello!!! There is, but for me by the time I was diagnosed I was already getting diagnosed with other stuff by the rheumatologist (they'd be ultimately the experts on Raynaud's, though usually I think a GP can diagnose it, too?). and Raynaud's was just added on at the end.

If you're experiencing some of the symptoms, talk to your doctor about it and see what they suggest--and get some of those cool fingerless gloves! The only way I've found to truly avoid the symptoms is to keep my hands and feet from getting cold ever. I often fail. But we can try. ;-)

I hope you start feeling better soon! Raynaud's hurts like a bitch.

(As y'all can probably tell, this blog is pretty much out of service right now. I'm sorry about that, so much love to all of you! Perhaps someday I will bring it back, but right now the stars are not aligned. I can still totally give support/hugs/sympathy to anyone who messages me individually, though, I still use this general account for running some of my web series blogs.)

[theissueswithautoimmune]

You crack me up! I too have a fucked up immune system. Have since my 20's. Diagnosed at 46....Positive anti U1RNP. WTF. Second, third and fourth opinion UCTD, fibro, CFS, hypothyroid blah, blah, blah..... I still feel like sh**. I'm new to tumblr and still dont understand its nuances. I follow you on my smartphone as jetchickwithmctd. Laptop somehow Im lupussuucks. I've enjoyed your blog and wonder more about your journey to the diagnosis of mctd. There's so few of us. Would you mind sharing?TX

Thanks for messaging!! Yikes, that’s a long time to not know what’s going on. Hope you’re on the upswing even if things still suck.

Tumblr takes so much getting used to, but once you’ve got the hang of it it’s great. I’m being followed by both those accounts, so I bet you started two separate accounts, one on laptop and one on mobile. Maybe you can sign out on one and log into the other?

I was lucky when it came to my diagnoses—autoimmune problems run in my family (I talk about my mom on here sometimes—she’s got Lupus) so when I started displaying symptoms I went to her rheumatologist pretty quickly. I have a lot of related conditions—Raynaud’s, Psoriatic Arthritis, Psoriasis—But I was 16 when my MCTD actually surfaced. My running theory is that it was a particularly stressful trip to Europe with my school that set it off; I got a lot of sun, not enough sleep, and pretty much ran myself ragged every day trying see everything, and about halfway through I started noticing unusual pain. Lots of joint pain, generalized pain, skin sensitivity (people don’t get how awful this part is), and fatigue, all that great stuff. It continued past the trip and then just wouldn’t go away. A month or so later with no improvements we started looking around for potential diagnoses. After we ruled out stuff like infection, mono, and SAD, I went in for an ANA and it came back positive.

There were tears. It’s a little freaky to get diagnosed as a 16-year-old with something that’s gonna last forever (BUT MAYBE NOT SCIENCE IS CAPABLE OF SOME COOL SHIT). That was a really rough year; I spent all of my spare time plus gym class asleep so that I could keep my grades up and stay involved in theater and horseback riding. I developed a pretty unhealthy addiction to Doctor Who which has made some episodes totally unwatchable because I associate them too heavily with my condition.

But I’m back on track health-wise for the moment, so I can hope that catching it as early as we did has yielded some benefits. Being in a warmer climate for college has helped a lot, though I have to watch out for sunburn and finals induced flares.

Thanks for asking! It’s great hearing from people who enjoy the blog.

[theissueswithautoimmune]

oh wow til today i didnt know what 'spoonie' was (id read the piece tho!) but having chronic pain/fatigue/other illnesses its perfect and this blog is perfect. hope you have a nice day, friend!

I like "spoonie" as an informal identifier. It sounds like so much more fun, like we're all part of some secret club. Which we kind of are... people who spend enough of their time on the internet while bedridden to figure out what it means. :-P

Have a lovely day, thanks for messaging!!

[theissueswithautoimmune]

Hi there! I've been a frequent flyer here since I was diagnosed with Hashimoto's Thyroidits about a month ago (currently sttill trying to get my autoimmune "buddy" under control...but we all know how fast doctors move). I know you get these a lot, but your blog is a place of comfort for me when things get really tough. Sending you soft blankets, many spoons, and forgiving joints <3

Hey!

I'm glad to hear from you. I could never get too many messages from followers--you guys all kick major ass! Tbh, reading through old messages I've gotten is something I do when times get tough on my end. :-)

Good wishes and lots of spoons!

[theissueswithautoimmune]

Who else #putonpurple for Lupus Awareness Day?

[theissueswithautoimmune]

Remembering to wear purple during Lupus Awareness Month

[theissueswithautoimmune]

Oh god this is brilliant. I got diagnosed with Scleroderma(similar to MCTD) when I was a toddler, so at 21 my life is pretty sclero-orientated. I keep looking through your posts and demanding my mom share my amusement.

Thank you!!! I'd never heard of Scleroderma before--just looked it up! That sounds really sucky. :-/

I hope your mom is enjoying it like you are! My mom's a longtime reader of the blog--several of the posts are based on her experiences and stories along with my own. It's good to be able to share the frustration with someone.

Hope to hear more from you!

[theissueswithautoimmune]

Just found you and I'm in love! I've had rheumatoid arthritis for 6 years and your blog is too funny

I'm so glad you like the blog! RA sucks--I feel like no rheumatologist's office is complete without one of those "progression of RA" posters that scares the hell out of me.

Thanks for reading, hope to hear more from you!

[theissueswithautoimmune]

Psoriasis

[theissueswithautoimmune]

"Where the fuck are my fucking pills?!"

[gabisdrabbles]

Me every week at the pharmacy.

[maybemab]

I work in a pharmacy and when people do this I want to throw my shoe at them.

[theissueswithautoimmune]

Oh dear! This was intended to be about my losing my pills all the time—all those little pill boxes are easy to drop into a backpack and never see again!

Be nice to pharmacists, everyone!! It’s not their fault that it ‘s difficult to get your pills sometimes—I’m sure there’s a fuckton of bureaucracy to deal with on their end, as well!

Hate the corrupted medical industry, not the people who are just doing their jobs!

[gabisdrabbles]

Just to clear this up: I’m TOTALLY not sending any hate to pharmacists. I LOVE my pharmacist, she’s been helping me since I was less than a year old. I was referencing the fact that I’m there literally every week. You pharmacists rule!

[theissueswithautoimmune]

Yay, glad to hear it! I'll be real here, I was a little worried I was going to end up with an argument on one of my posts and I was 100% not prepared to deal with that.

Exceptionally glad that everyone's on the same page! I'm noticed that things tend to get exciting when life-saving pills are on the line...

[theissueswithautoimmune]

"Where the fuck are my fucking pills?!"

[gabisdrabbles]

Me every week at the pharmacy.

[maybemab]

I work in a pharmacy and when people do this I want to throw my shoe at them.

[theissueswithautoimmune]

Oh dear! This was intended to be about my losing my pills all the time—all those little pill boxes are easy to drop into a backpack and never see again!

Be nice to pharmacists, everyone!! It’s not their fault that it ‘s difficult to get your pills sometimes—I’m sure there’s a fuckton of bureaucracy to deal with on their end, as well!

Hate the corrupted medical industry, not the people who are just doing their jobs!

[theissueswithautoimmune]

"Where the fuck are my fucking pills?!"

[theissueswithautoimmune]

Feeling down about putting pressure on friends/family to take care of you

[theissueswithautoimmune]

When I'm up all night trying to ignore a painful joint