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 I have actually gone on any dates — baby steps!)

I started drawing again. What I mean by this is I spontaneously drew a little comic and characters that represent actual peoples and feelings — spontaneous drawing is something I have had a massive “block” on for a good six or seven years. Don’t get me wrong I draw a shit ton for work, but almost never from impulse and channeling personal expression. This is like my creative juices trickling alive after a massive drought.

All in all, great signs.

On the flip side, I’ve had to take sleeping pills almost every night for the past month and feel an ulcer coming on due to anxiety around my upcoming move and the stresses of the new job. I have a wider range of responsibilities and although the company culture feels much much more balanced than my NY work, I am still a wreck about the possibility of my nephritis relapsing (or lupus activity coming out of remission in any major way) … which is my absolute worst nightmare at this point.

I’ve been totally trying to center myself and be present, but as it has in the past, my fear of the future has me in its unrelenting grip.

Sigh.

One day at a time …

Lupus Research Institute on Hill Advocating for Professional Training on Lupus

"… 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 was conducted by research firm Roper on behalf ofHuman Genome Sciences and GlaxoSmithKline.” (via)


Read more here: http://www.sacbee.com/2012/03/21/4356258/lupus-research-institute-on-hill.html#storylink=cpy

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 genuine, earnest, real interest in getting back together.

i am managing my expectations for this job prospect (which i may / may not receive or accept) and especially wanted to manage expectations / shore up my integrity for the ex (i knew the conversation was coming because he wanted to “talk” while we both attended a wedding of mutual friends this past weekend).

here are what i feel are two opposing impulses — the new job, the fantasy of taking on a new, better, healthier life, starting fresh, gaining an independence i haven’t had for almost two years, and maybe finding a new boyfriend, VERSUS the ex beckoning me back into the same patterns and insularity i developed while we were a couple. but you know what? when my ex talked, i MELTED. i kick myself for how easily i run back to the comfort of an established relationship. i am exercising emotional detachment now, lest it be stockholm syndrome, pining for the perverse security of a previous captor …

here’s my thought process: well, he’s making the effort now (although he usually never calls me, ever), earnestly implying that, come the next step of his career, he will have more time for our relationship, and he’s telling me he’s pretty much going to be in LA for his film work more of the year so we’ll get to see each other — doesn’t it make sense to give him a second chance?

but this disregards the facts, which are: he dumped ME after about a year of a long-distance relationship, i may or may not be moving to LA anyway, and i still have doubts as to his reliability if, let’s say, i get seriously ill and/or incapacitated again in the future, particularly regarding personal habits and flaws of logic. i have to fill in some holes here.

for further discussion (when i’m not a grog-ball), i will ask him: what impelled you to express this desire to get back together after a period i know you were “in love” (as you stated) with another person (ie, did they reject you)? and do you remember the issues which led to the demise of our relationship and the amount of pain it caused me — do you expect me to have you back with open arms without acknowledging this? if so, how do you expect to systematically work towards repairing the relationship?

of course, the last question is to far into the future it feels irrelevant. and i feel so often in the past i was too “nice” and let him off the hook, that he stopped being fully aware of how his behavior affects other people and least of all, me and his family (because “we will always forgive him no matter what”).

these are all tough things i need to discuss with him when my mental faculties are functioning … or NOT discuss with him at all …

(remember my oath to myself to start dating again? yeah, i’ll describe this in the next post.)

: Cracks in the Confidence: When Your Doctor Recognizes the Possibility of Not Reaching Remission

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 cycle of loss and grief that our loved ones and perhaps our physicians, in their own way, endure with us.

"This also leads me to a recent NY Times article I read recently discussing the struggle physicians face over telling the truth and finding a balance with transparency and truthfulness. Where does a physician draw the line between giving a patient false hope and taking away hope?

While a majority of the nearly 2,000 doctors polled believed that physicians should never lie to patients or fail to inform them of the risks and benefits of a procedure or treatment, a large number also revealed that they had not been completely honest or transparent over the past year. More than half had described a patient’s prognosis more optimistically than warranted. More than 10 percent had said something untrue.

"I appreciated my physician’s honesty and transparency, and studies suggest that most patients prefer this to be the case as well. When dealing with terminal diseases in both senses of the word, a lack of transparency feeds not just false hope (which isn’t always a bad thing. Hope in the face of suffering gives patients a reason to persevere), but a lack of understanding of the disease and its severity. When I was initially diagnosed, I had no idea that this had no cure, could impact every part of the body, and often does not respond to treatment. I wish someone had been upfront with me about this rather than me discovering this over time and by interacting through other patients. I was hardly emotionally prepared for this journey when first diagnosed, and I do believe that even just a bit more honesty and transparency would have been helpful, perhaps with the suggestion to seek out a psychologist to help me cope with the upcoming challenges I was about to endure.”

chiukeat:

fascinasians:

Asians in the Ivory Tower: Dilemmas of Racial Inequality in American Higher Education - Robert T. Teranishi
Current Issues in Asian and Pacific American Eduction - Russell Endo, clara C. Park, and John Nobuya Tsuchida
Unraveling the “Model Minority” Stereotype: Listening to Asian American Youth - Stacey J. Lee
The Deathly Embrace: Orientalism and Asian American Identity - Sheng-Mei Ma
The Hyphenated American - John C. Papajohn
Model-Minority Imperialism - Victor Bascara
Chains of Babylon: The Rise of Asia America - Daryl J. Maeda
In Defense of Asian American Studies - Sucheng Chan
Playing the Race Card - George J. Sefa Dei, Leene Luke Karumanchery, and Nisha Karumanchery-Luik
Asian American Dreams - Helen Zia


Looks like I got some reading to catch up on.

chiukeat:

fascinasians:

Asians in the Ivory Tower: Dilemmas of Racial Inequality in American Higher Education - Robert T. Teranishi

Current Issues in Asian and Pacific American Eduction - Russell Endo, clara C. Park, and John Nobuya Tsuchida

Unraveling the “Model Minority” Stereotype: Listening to Asian American Youth - Stacey J. Lee

The Deathly Embrace: Orientalism and Asian American Identity - Sheng-Mei Ma

The Hyphenated American - John C. Papajohn

Model-Minority Imperialism - Victor Bascara

Chains of Babylon: The Rise of Asia America - Daryl J. Maeda

In Defense of Asian American Studies - Sucheng Chan

Playing the Race Card - George J. Sefa Dei, Leene Luke Karumanchery, and Nisha Karumanchery-Luik

Asian American Dreams - Helen Zia

Looks like I got some reading to catch up on.

(Source: fascinasians)

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 minutes of using the device, take a 20-second eye break and look at something beyond 20 feet. “This gives your eyes time to relax,” he said. “It’s almost like flexing your muscles.”

If that does not work well enough, consider the glasses. 

(Lenses to Ease the Strain From Staring at Screens)

chronicstupidity:

Just a note: I’ve been told every one of these statements at some time, and some of these statements everything single day — an experience I’m sure many of you share.

Yay, people who invalidate my illness! On the spectrum of apathy, I certainly dont mind folks who say these things with good intentions. But there are definitely a lot of folks who say these things to feel like they have a sense of control and definition over what you are or represent to them. Thankfully, one of these people I broke up with. Others I cannot avoid. But the best thing is how much it makes you appreciate and love people who do the opposite of this.

Woah, if you stare at no particular part of this picture, you see little black squares at the intersections of the white lines

chronicstupidity:

Just a note: I’ve been told every one of these statements at some time, and some of these statements everything single day — an experience I’m sure many of you share. Yay, people who invalidate my illness! On the spectrum of apathy, I certainly dont mind folks who say these things with good intentions. But there are definitely a lot of folks who say these things to feel like they have a sense of control and definition over what you are or represent to them. Thankfully, one of these people I broke up with. Others I cannot avoid. But the best thing is how much it makes you appreciate and love people who do the opposite of this.

Woah, if you stare at no particular part of this picture, you see little black squares at the intersections of the white lines

(Source: disabledfeminists.com, via gotquirks)

: Fighting the Fog From Pain With Narcotic Medication? New Study Reveals What We Already Know

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 asks “what’s wrong with you?”,or “Why are you using that (insert adaptive equipment of your choice)? Great comic though.