January 2012
4 posts
1 tag
riddlemehthiz asked: Thank you for responding! Tumblr didn't notify me in any way so I'm glad I stopped by your page again! That is good advice for travel. Also, I would have rather posted this as a response to the conversation we already started. Is there a way to do that in the future that you are aware of?
dinhclaire asked: Hey! I just wanted to say that I respect you so much for your courage to confront Lupus and not let it destroy you. I have alopecia, so I share some of my experiences with the feelings part of it. xx
owly asked: Hi, I came across your blog via Chronic Curve. I find your links helpful and applaud your efforts in increasing lupus awareness. However, I saw you wrote in response to a q that lupus nephritis will often result in the elimination of the disease. Lupus nephritis is SLE and is incurable. SLE w/ major organ involvement has greater mortality than SLE w/o. I urge you to be VERY cautious not to spread...
6 tags
Legislation Approved Appropriating $1 Million to... →
In any science, especially medically science, funding is everything. If you’re not a hot topic enough to get attention, then you aren’t getting funded. And without the money, there’s no research to be had. Over the years there have been “trendy” diseases to donate to. Those diseases, while important, overshadow the rest.
Take Breast Cancer, for instance. Sure,...
December 2011
3 posts
greatest-treasure asked: is taking omega 3 fatty acids along with prednisone a good or bad idea?
riddlemehthiz asked: I was wondering if you travel much and what it is like to travel and have Lupus. I have chronic TMD which literally affects me every day of my life since Aug 2011 and haven't done any serious traveling this year but, am wondering what its like to do so with a chronic condition? Thanks!
Anonymous asked: couldn't agree with you more and loved the humor! you're brilliant!
November 2011
1 post
6 tags
October 2011
9 posts
5 tags
a large, fruit-eating bat.: Hmm I wonder. How many... →
uctdgirl:
thiscouldmakeyouhappy:
leoncillo:
And how do you feel about it?
And if you’ve dropped out because of an illness, what are you doing now to make a living?
My answer cut off halfway through and now I can’t change it lol.
So anyway I was saying its my last semester but…
Well, for me, I made it through most of college without a hitch, even though my Lupus symptoms were...
7 tags
Alopecia Universalis Q and A
Today, I had the pleasure of asking some questions directly to a 20 year old girl living with Alopecia Universalis. Alopecia, very simply, is an autoimmune disorder that causes full-body hair loss. Many Chronic Illnesses (included Lupus) come with some kind of Alopecia as a symptom, but that is very different from AU itself. This girl was extremely confident and high-spirited, and I thought you...
Anonymous asked: I'm sorry if you've been asked a lot of questions about this, but I was wondering...what symptoms did you have before you were diagnosed with lupus? I'm currently seeing a rheumatologist, and I've basically been in the dark for about 2 years. The doctors believe that I'm highly susceptible to lupus based on my blood work as well as symptoms of fibromyalgia and...
Anonymous asked: Is anybody recovered by lupus ,a girl from Serbia
Anonymous asked: I hope u never have 2 go thru da pain that alot of lupies have 2 go thru on a daily basis. Obviously u have a mild form of lupus, lucky u! Mayb if u went thru months & months of pain like some of us have u wudnt make fun of da spoon theory dat has helped many of us explain r illness 2 friends n family. I dont c how u can belittle somethin dat has been such a help 2 most of us. u have a rite 2...
6 tags
6 tags
FINALLY, some negative reporting on Benlysta
The National Institute for Clinical Excellence, a portion of the UK’s NHS has pushed for *no* coverage for Benlysta’s use on patients. And they have some damn good reasons.
Benlysta is thought to be working no better than the previously used Lupus treatments, and in short, the (absurd) cost of the drug is not justified in the slightest by it’s results.
I have to agree, 40...
6 tags
Scientists Discover a Master Key to Unlocking New... →
My title is intentionally incomplete, as this new research claims the treatment would be successful for all autoimmune disorders, Lupus included. I just wanted to appeal straight away to my Lupus-subscribers.
Now, I have a lot of negative feelings about the fact that we were edging on the findings for a cure just this past December…but I understand that treatment research will always...
September 2011
4 posts
1 tag
1 tag
Let You Fall For Every Empty Word I Say: Being... →
andfakethewayiholdyou:
Imagine there being an ocean between you and the person you need most in life, you can’t just get in a car and drive to them whenever you need to, you’re not even in the same time zone. Sure you can skype every day and talk on IM all day, but it’s not the same as being there.
When I’m sick she…
Sweetheart I do understand, really I do. It absolutely sucks.
Anonymous asked: Hey you. I don't have a question. I just want to say that you are awesome. And I'm happy to have met you :)
10 tags
Chronic Illness: 30 Things Meme
1. The illness I live with is: Lupus (SLE), Rheumatoid Arthritis, Raynaud’s Phenomenon, Post-Traumatic Stress Disorder (PTSD)
2. I was diagnosed with it in the year: Lupus, RA, RP: 2002-2003; PTSD: 2008 3. But I had symptoms since: Med: 2001, Psych: 2007 4. The biggest adjustment I’ve had to make is: Caring about what I eat or do. I’m still not very good at it, being that not...
August 2011
7 posts
8 tags
Frustrated Tears
I apologize in advance, as this post will not be particularly informative or clever or probably interesting. It’s just a rant.
It was one of those days today. One of those days where symptoms popped up one after the other and just tore apart my day. I woke up with a sore throat, then a few hours later all my joints swelled and began to ache. I drank some Airborne, took my vitamins, and...
3 tags
The title of your father's profession is now your...
andfakethewayiholdyou:
pajama-sam:
c-u-m-b-e-r-b-a-t-c-h:
please-callmejamfucker:
supersonicsonarradar:
jamcuffed:
hopskin:
katsplanet:
elcolfer:
The Computer Programmer
The Maintenance Supervisor
oh
The Artist
cool
The Psychiatrist
The Contractor
oooooohh
The Landscaper
Hm. Or, The Farmer. I think I probably prefer The Landscaper.
The Editor
OH SNAP MY DAD’S...
5 tags
Birth Control and Lupus
I just read a really disturbing bit of nonsense during a google search for Lupus news (I refuse to link to retarded bullshit) but basically, the nonsense in question was a girl asking if it was safe to take birth control if you have Lupus. The answer was that “it doesn’t cause flare-ups, so it’s safe”.
Ok. It’s true, the birth control pill does not cause...
7 tags
Despite the latest trend of funding cuts for... →
I’m super glad to see this. BRM, Biomedical Research Model inc. has done tons of research for many other autoimmune disorders, but never Lupus! The grant is $571,610, and let’s hope it doesn’t get slashed to less than that!
Possible outcomes might include better treatments, and more specific answers. Though, after the big fat let down Benlysta turned out to be, I’m...
Anonymous asked: Hey, my name is Michelle and I, too, suffer from SLE, Fibro, Raynauds and a few gi issues. I am 28 years old and have been diagnosed for almost 3 years now. I LOVE your viewpoint of things and have read most of your entries after reading about the back-lash to your disgust in the spoon theory. You know what, I agree with you. I have had severe flares where I wanted to stay in bed but I got out...
2 tags
The Fuckest Uppest: The email I just sent Tumblr... →
-pallasathena:
I just want to voice my displeasure at the behavior of Tumblr regarding missing-e.
This man has spent countless hours improving the functionality of your site to such an extent that it has brought people back to your site when they otherwise may have left. It’s bad enough to put a stop to his…
1 tag
July 2011
12 posts
7 tags
Sexism and the Humanities - Troll Professor
So I just started a class called Sexism and the Humanities, and today was our first real day of class discussion. The short version: I spoke my mind and all hell broke loose.
Here’s the long version:
I’m not sure yet if the Professor is trolling us to get us riled up, playing devil’s advocate, or being completely serious. But he starts class by having me transcribe his notes...
a large, fruit-eating bat.: How to Win at College,... →
parisoutthebackdoor:
1. Don’t do all your reading
2. Be class privileged
3. Be class privileged
4. I wasn’t kidding about that class-privilege
5. Don’t have ADHD
6. Be White
7. Be allistic
8. And don’t have social phobia or non-normative ways of communicating
9. Be White
10. Be so…
Wow. This was incredibly baseless and idiotic. Someone could easily make a counter argument...
5 tags
You're pretty cheeky for a Motorrad.
Why isn’t there any Kino’s Journey on Tumblr? Seriously, there’s some stupid lame anime gif every five seconds but *no* Kino? End this at once.
beatlej3ws asked: Excuse me, but where were Muslims told to kill by the Quran. Nowhere. The entire thing is based off peace. Learn to read between the lines or shut the fuck up.
mstaken1 asked: are u supporting the unpopular opinion or against it?
7 tags
3 tags
"I'll Be Monitoring Your Frequencies"
Gets me wet every time.
5 tags
Cakes! doing the Hippie Shake!: TMJ and Lupus- Jaw... →
cakesandhippyshakes:
so every now and then my jaw makes a clicking noise, no pain but it does inhibit my jaw from opening but so wide. TMJ hinging is common. its usually caused by teeth grinding or other mandibular stress. in the usual cases, hinged jaws lead to ear swelling and blockage. and we don’t need any…
Read this guys. I honestly did not know about this. I can’t open my...
10 tags
Emergency Medicine (in America)
I would have never expected this to be a problem, but apparently it is. Recently, I was at work at a local college and a young lady next to me coughed up blood, turned extremely pale and then passed out into my lap. I, as a reflex, picked up my phone and dialed 911. As I was explaining the situation to dispatch, a superior came up to me and started to scream and holler at me, explaining that I...
5 tags
azucar-pal-cafe asked: Just wanted to say hi from Puerto Rico!
-Didnt know there was a tumblr for this but im so HAPPY i found it.
- I was diagnosed at age 17 (now im 20) it havent been easy, but nothing is imposible!
Good vibes!
-Didnt know there was a tumblr for this but im so HAPPY i found it.
- I was diagnosed at age 17 (now im 20) it havent been easy, but nothing is imposible!
Good vibes!
13 tags
Iron/Anemia and Lupus/Chronic Illness
I want to preface this post by saying that Iron deficiencies and Anemia are incredibly common compared to other deficiencies (especially in any female of child-bearing age), and is something healthy and sick people alike should be aware of. According to the CDC, Iron deficiency is the most common deficiency in the world. And unlike most other vitamins and minerals, an excess amount in the body...
June 2011
23 posts
7 tags
I can't believe that they're still trying to paint... →
Ok, well I can actually believe it. But the truth of the matter is, Benlysta does ABSOLUTELY NOTHING for over half of the people who try it. And for a drug that costs about $35,000 a year per person…I’d say that’s something to be mentioned…loudly.
Let’s also remind people that the drug has helped ZERO black patients. Zero. Let me try to iterate this as poignantly...
8 tags
Vitamin D and Lupus/Chronic Illness
(BTW, I will eventually get around to all the major necessary Vitamins/Minerals but I want to start with those most frequently tied to Lupus because, well, this blog is about Lupus)
To start, Vitamin D, unlike Magnesium, is found in very few foods and is mostly absorbed through the sun’s rays. Which is why many people with Lupus often find themselves at a disadvantage in maintaining...
2 tags
cakesandhippyshakes asked: not really a question but...
thank you for your Magnesium and Lupus post this morning. I live for finding information on lupus and how to live with it. you're the best. <3
thank you for your Magnesium and Lupus post this morning. I live for finding information on lupus and how to live with it. you're the best. <3
7 tags
6 tags
Cakes! doing the Hippie Shake!: way too eery... →
cakesandhippyshakes:
so, the doc called with my results. (gave my doctor permission to give me results over the phone because of my work schedule, I can’t make it to the office often… so the less pertinent stuff, he can just say over the phone)
anyways, he says my essentials were really low (calcium, magnesium,…
Wow that is such a great coincidence! If you need any advice on...
6 tags
1 tag
4 tags
