April 2012
1 post
1 tag
Sunday nite recap
Dear friends,
Sooo much has happened since last posting.
I travelled to LA, and had my second interview, and then spent a lot of time on the water with some new and old friends.
I got the job.
I am filled with optimism and hope!
I have been on an online dating site for about a month now — a huge step for me because I have never legitimately “dated” in my life. (Not that...
March 2012
10 posts
4 tags
Lupus Research Institute on Hill Advocating for...
“… lupus patients often downplay pain and other symptoms to their physician and family and friends. Eighty-seven percent of those diagnosed with lupus report playing down symptoms to their families, and 52 percent said they minimize symptoms to their physician. Yet, almost three-fourths (72 percent) of physicians surveyed did not believe their patients minimized symptoms. The survey...
3 tags
fever-y pitch
i am writing this with a low-grade fever and a scratchy throat, so forgive the errors that will betray my mental fogginess.
today, a few things happened. one, i had a phone interview for a new job in a new city i have not lived in before (which i will call the second major fashion epicenter of the united states), and two, i had a phone conversation with my ex who expressed what appeared to be...
: Cracks in the Confidence: When Your Doctor... →
So, so true — completely relate to chroniccurve’s entry below:
chroniccurve:
“As hard as it is for us as patients, we cannot deny that it is equally difficult for others to watch many of us lose parts of our lives, dreams and much of our identities in the process. That’s not to say we don’t gain new life lessons, opportunities, and identities—we do—but there is a constant...
katelucia:
I want to have a job that doesn’t make me hate myself.
I want a job that leaves me time to think for myself
I want a job that doesn’t make we want to drink my weight in liquor by the half gallon
I want a job that leaves me energy to get healthy and maintain my health
I want a job that leaves me time and mental energy to read all the things I need to read
…
Computer vision syndrome originated with office work, but the popularity of mobile devices is now straining the eyes in a different way, according to Dr. James E. Sheedy, director of the Vision Performance Institute at Pacific University in Oregon.
To avoid strain on mobile devices, Dr. Sheedy said, make the print size larger, read for shorter periods and employ the 20-20-20 rule. For every 20...
: Fighting the Fog From Pain With Narcotic... →
chroniccurve:
I went out last night. I went out like a normal person at a late hour and hung out at a bar with friends. I laughed and enjoyed myself and met some interesting new people. And by 4 in the morning, I was regretting the entire night. The regret has carried over into today, and with the added pain…
Diagnosed
positivelydisabled:
helloelloh:
marras6:
Probably the worst thing anyones ever said about illness was that if you pray hard enough to god then you will be cured. And they said this on a Lupus forum I was on. I mean…really? How insensitive can you get?
Visibly disabled people have the advantage of not having to explain their condition…except for every other person on the street who...
“I was settled into nothingness; a kind of non-being, and I accepted it. It...”
– Bukowski (via cuntbarf)
February 2012
9 posts
“When one speaks of disability, one always associates it with a story, places it...”
– Lennard J. Davis, Enforcing Normalcy (via queerbody)
“For the chronically ill, details are all. To cope with chronic illness means to...”
– Arthur Kleinman, The Illness Narratives (via shanghailil)
1 tag
Not doing well lately. Found out my ex boyfriend has been in love with another person — I suspect for several months, maybe a year now. It’s really thrown me for a loop (to put it mildly), because, although we ‘broke up’ half a year ago, he still talks to me as if we are the best of friends (‘to make sure I’m doing okay’). We had been together for half a...
5 tags
$
As I am approaching 30, with a chronic illness, and deeply concerned about my future finances, I did a little google search on how much money people usually have saved for retirement by now. I came across a financial management blog for people 30 and under, which stated a good goal is to have saved at least a year’s salary in retirement. Loving to get to the juicy part of blog postings where...
ChaosRunsTheFamily: Be kind to your Kidneys, with... →
chaosrunsthefamily:
As many of you don’t know, I work as a Hemodialysis Practitioner helping patients with End Stage Renal Disease or ESRD. Our kidney’s do a whole lot in cleaning our blood from the many toxins that are created from day to day living. As a major advocate in good health and proper basic knowledge on…
5 tags
Wishing You an Abundance of Spoons: I Don't... →
Amen, sister! I, too, very much dislike it (to put it mildly) when people say “don’t let your illness define you.” It’s like telling me “don’t let being a woman define you,” or “don’t let being a minority define you.” My chronic illness isn’t something I can turn on or off. Maybe I can put on a “healthy” outfit and pass...
3 tags
"The geoepidemiology of systemic lupus...
This study compiles worldwide data on lupus disease epidemiology, with a focus on genetics and disease prognosis and mortality. SLE manifestations vary by race, with all non-Europeans (East Asian, South Asian, Middle Eastern, African, and Hispanic) having higher rates of major organ damage (renal and neuro-psychiatric) and higher mortality rates due to genes. One important key take-home: long-term...
7 tags
Everyday I'm Tumblin'
A caveat. If you are reading this tumblr to find concrete answers to your medical questions, you’re in the wrong place. Go to a doctor. If you have the same disease I do and read something here describing something unpleasant, don’t get scared shitless. I am not YOU. If you’re here to get support and advice, I’m not giving it. If you’re trying to rally a call to...
January 2012
10 posts
5 tags
Support Group
I hate support groups. They are a reminder that I’m part of a club I didn’t ask to join. I most likely would never interact with the people I meet in support groups if I didn’t have this disease. Like, the only thing remotely in common with me and other members of a support group is this disease and that we live in the same vicinity. A group of pollyanna’s all giving into...
2 tags
This stormy weather is making my bones hurt like a mofo. Fuck you, low pressure fronts!
3 tags
Genes May Give Clues to Severe Form of Lupus
The study’s authors explained that HS1.2 leads to increased activation of the “transcription factor NF-KB” (a molecule that “reads” the genes to make them work). As a result, this accelerator boosts the production of antibodies that attack the tissues, and increases the aggressiveness of the disease.
The discovery of the accelerator could lead to more effective...
Challenge
Can’t think of one myself. Can you?
carbon65:
I’ve been thinking about this a while. I cannot name one character (CHARACTER, not ACTOR) on a tv show with a chronic autoimmune disease where the condition is an integrated part of the show, like chronic illnesses are in real life. The only good example I can think of is Tucker Bryant from Royal Pains, but he’s a hemophiliac, which is...
5 tags
eye test
i’m going in for my retinal angiography to test for changes in my eye … glaucoma, macular degeneration, etc. not excited for the fluorescent dye injection. most of all not excited for the dread that accompanies waiting for a report. my opth referred me to a retinal specialist (“Dr. T”!) because the hole in the back of my eye has grown. i don’t have vision problems i...
I lately have been fascinated with tumblrs featuring images of nuns in full habit, mennonites, the Amish, drawn to their isolated and simplified lifestyles based on a commitment to the “sacred” …The simplicity of dress, the pure lines, modesty, beauty of conformity, the implication of humility and dedication to service … of course it is all aesthetic (it’s in no way...
2 tags
Although not everyone in the world of French fashion fell in line with fascist ideas, it’s no coincidence that many did. After all, there are deep and unsettling parallels between the industry, particularly in Europe, and fascism’s antidemocratic aesthetic.
Both, for example, rely on a handful of oracular, charismatic leaders who issue proclamations to (select) crowds. Fascist leaders offered...
2 tags
the problem of too much hype
much hyped, cfda award-winner, _______________ : OVERRATED
much hyped, cfda award-winner, _______________ : OVERRATED
small, independent designer, ___________________ : OVERRATED, but nobody cares because this designer isn’t overhyped.
conclusion: stay underhyped so no one will know your stuff is over-rated, over-priced fodder for the elitist masses.
6 tags
labs
Tomorrow morning I’m going in for my lab work. I’m so used to the needle procedure (I can roll up my sleeve, extend my arm, clench and unclench my fist, and hold that cotton ball in the crook of my elbow like a champ), but never once has doing lab work not frightened the living day lights out of me. My anxiety is out of control (hence this hypomanic post at 1:30 AM). Give me infusions...
Silky Micro-Needles Could Make Shots Pain-Free →
chroniccurve:
“Researchers at Tufts University have created a potentially pain-free drug delivery system that uses an array of micro-needles made of silk protein to get under the skin…”
December 2011
8 posts
6 tags
quiet nights
It’s one of those quiet nights. I’m alone at home, watching a cornball movie on netflix, lounging on my bed, with my cat curled in a ball next to me. I have pain everywhere, and I feel like I have the flu, and I’m exhausted to the bone in the way I’ve been the past week, but I’d rather enjoy myself just this bit … just stay up and watch this stupid movie than...
Air Pollution May Cause Rheumatoid Arthritis →
chroniccurve:
“Exposure to some types of air pollution, especially sulfur dioxide — one of the six most common pollutants in the United States — is associated with a somewhat increased risk of developing rheumatoid arthritis, according to research presented this week at the American College of Rheumatology Annual Scientific Meeting in Chicago.”
Sometimes there is nothing more liberating than...
beckyskitters:
Lots of people talk about the right to be happy, but for me I need to tell myself that it’s ok to be unhappy. That my experiences and my pain are valid and if it hurts me then it’s because what I am dealing with is hard.
And it’s ok.
“Never, ever, compare my pain and illness to those of others. My illness is mine,...”
– 10 Things I’ve learned from Living with a Chronic Illness.
- Rheumatoid Arthritis Guy
(via helloallyg)
“The widespread classification of disability as a “personal problem” obscures the...”
– Julia Watts Belser, Returning to Flesh: A Jewish Reflection on Feminist Disability Theology (via flutterflyinvasion)
4 tags
Eye Patch
I went in today to get the hole in the back of my eyeball checked. No, it was just a regular eye check up, except I DO have a macular hole with epiretinal membrane — a small hole in the back of my retina. Not sure why or how (the eye docs saw it last year), but it’s just like when they say “you have lupus,” there’s no why or how. You just got it, and now you have it.
...
6 tags
30 Things You May Not Know About My Chronic...
1. The illness I live with is: Lupus Nephritis, Class IV, Diffuse Proliferative 2. I’ve been sick since: March 2006 3. But I’ve had health issues since: 2003 4. The biggest adjustment I’ve had to make is: I have to completely curb the goals and ambitions I had regarding career, finances, and family. What I consider “achievement” is completely different from most my friends and...
November 2011
5 posts
Junk food can hijack brain like drugs do, experts... →
Study links Parkinson's disease to industrial... →
“My mom gives me great advice. I think [one piece] that applies to me and anyone...”
– http://nymag.com/daily/entertainment/2011/11/mindy_kaling.html
Excellent post by the creator of the Spoon Theory —
From “Pay no attention to the girl behind the smile -what I wish people knew about me” from butyoudontlooksick.com
Pay no attention to the girl behind the smile…
It has been said by many people that I am a very good actress. “But You Don’t Look Sick” seemed to be all I heard. Is this a good thing? Sometimes it is an...
From “Sick Humor: The top ten worst suggestions commonly given to someone with a chronic illness” on butyoudontlooksick.com AndreaSeptember 21, 2011 at 10:07 am
I have been appalled by the increasing number of people who want to blame someone for his or her illness. A good friend with breast cancer was asked if she had considered what she had done in her life to “cause” her cancer. My...
October 2011
1 post
flick chicks
http://www.newyorker.com/humor/2011/10/03/111003sh_shouts_kaling
i love you, mindy kaling! kaling on cheesy archetypes of women in the movies.
September 2011
1 post
"Kidney Involvement & Lupus" Chat Transcript for...
Link
Moderator Without further delay, let’s begin. The first question comes to us from Stoneham, MA. I have “significant” scarring from nephritis. Is this permanent and can it be reversed yet?
Dr. Rovin Scarring in the kidney from lupus nephritis or any other inflammatory kidney disease currently cannot be reversed. There are some animal studies in which scarring has been...
August 2011
1 post
An Artist’s Alfresco John Hancock (Momo)
That began to change somewhat last month when Mr. Divers posted a description of Momo’s project on his blog, Best Roof Talk Ever. Mr. Divers said that he first became aware of the tag in 2007, when one of his friends, Aaron Cahan, figured out that the paint line spelled the name Momo, then got in touch with the artist, who confirmed that he had created the markings. In a short essay, which was...
July 2011
6 posts
“I think it has been a lesson to me to not assume that you understand another...”
– http://jodimckeephotography.blogspot.com/2009/12/jacqueline.html#more
Jodi McKee, an NY-based photography, does a portrait series of people with autoimmune diseases and invisible illnesses, and the interviews are fantastic … http://jodimckeephotography.blogspot.com/2009/11/jennifer.html#more What would you like other people to know about Fibromyalgia? Chronic, invisible illnesses need patience and understanding, from ourselves as well as our families and...
A person suffering from hyperacusis might be startled by very low sound levels. Everyday sounds like shutting doors, ringing phones, television, running water, ticking clocks, chewing gum, cooking, normal conversation, eating, dishes, and other sounds will hurt his/her ears. In extreme situations even the use of earplugs fails to bring relief and the patient may spend their life trying to...
