I wish I could say that I am just returning from a more than a year break from the internet, but that’s hardly true. I stopped fashion blogging in 2017 when I decided to run for office (State Representative: Did Not Win) and had to convince people that I am really serious and palatable. I deleted my tumblr, even. I was pretty serious about it.

Palatable is now officially over.

Everything about the world right now is fucking unpalatable so…what’s the point in being plain or quiet? There isn’t one.

After I lost my primary I spent some time recovering and started a huge new art project that will take years (especially since I’m not working on it enough right now). I started, for a second, a group I hoped would become a Political Action Committee and we had some meetings and got fired up and all that and……Then my oldest kid got fired from his job that he loved and then he got really sick.

Really, really sick. Endocarditis, undiagnosed for months (I guessed literally 4 weeks before they confirmed it), emboli to the brain (tiny bits of infection causing teensy-but-no-less-alarming-for-the-size strokes—“innumerable” is how they reported it), 7 hospitalizations in an 8 week period, a million ER visits and finally double heart valve replacement on February 11 of this year. So absolutely everything in my life stopped for that.

Then there was caring for him for the 6 weeks of recovery. And the dog had to have knee surgery so I had to take care of her, too (yes more knee surgery on a now two year old dog). Then, we went on a cruise my mother had planned for the whole fam damily and it actually took emotional energy I didn’t have to have fun because: I’m dead inside. Mostly. And that kid went back home but he’s still unemployed and broke up with his girlfriend and I’m exhausted. Really, “exhausted” should be a punctuation mark, like instead of a period each sentence ends with “exhausted”

So it’s likely no big surprise that I just lost my juju and am still feeling really directionless “exhausted” See? It kind of works “exhausted”

Then there’s the pesky issue of the world right now, and the death of Democracy and watching as my personhood and equality (which we weren’t even done getting, dammit) are, along with many others in other groups people like to be mean to, being dismantled. What do you do with your day when you are just watching the world in flames from your comfortable living room and you cannot find the person you were who ran for office who was tough and optimistic and ready to take on the world?

Maybe for the moment, the answer to that is write. Figure it out “exhausted” And then get my groove back, when I’m not “exhausted”


OOTD: Swing

Fall in Southern NM means that you save a ton of money on climate control due to the general 30 degree temperature swing meaning you don’t need the AC or the furnace, but also it’s hard to get dressed because it maybe 50 degrees in the morning but then it’s 80 by afternoon. It’s a good problem to have.

Why Doctors Don’t Like the EDS Diagnosis

Posting this to remind myself of what the “answer” to whatever is wrong me usually is.

EDS and Chronic Pain News & Info

Handle With Care: Why Doctors Don’t Like the EDS Diagnosis – Jenrose – Oct 2017

I feel like many doctors resist Ehlers Danlos Syndrome (EDS) diagnoses for their patients…  for a variety of reasons.

  1. They can’t fix it.
  2. It means admitting that they have wrongly dismissed symptoms as psychosomatic for decades.
  3. It answers too many questions at once.
  4. People who have it often have a lot of things going on and it feels to doctors like their patients are “diagnosis shopping.”
  5. Admitting that there is a legitimate source of chronic pain means another potential patient on opiates, which invites scrutiny.  

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Hysterical Women

Three weeks ago Tuesday I got a flu shot. I even congratulated myself for being a “good” patient; having a chronic condition means that I avoid all optional (or, even, non-emergency) medical interactions wherever possible. This is why when I called to schedule a Pap smear last month the receptionist and I both got the giggles when she said, “Darlin’, you haven’t been here in FOUR YEARS.” So I knocked that out, got a mammogram (haven’t ever had one) and then thought I’d top my “I’m a Good Patient” sundae off with my flu shot. 

By the end of the day, I had a fever and hives. The fever lasted exactly three weeks. The fatigue, headaches, and general malaise lasted a few days  longer. Just Monday, I woke up with a butterfly shaped rash on my face. This suggested Lupus, naturally. So that kicked off a festival of tests and other appointments. I had this basket of symptoms that all began with the flu shot. Fever, chills, headache, fatigue, dry eyes, eye pain, headache, an episode where I briefly lost consciousness for a few seconds, rash on MAH FACE, fast heart rate, arrhythmia. 

To be clear, I don’t want to have Lupus. But, I did want an answer, because if you name things you can quantify them and sometimes even treat them. Unfortunately, my cardiologist doesn’t feel my need to be seen is pressing so that won’t happen until Monday, the dermatologist thinks I have (spontaneously) gotten rosacea, the blood work shows no inflammatory anything, no infectious anything, no positive ANA. The gatekeeper at the rheumatologist’s office didn’t even think my referral was valid and said so. “Why aren’t you seeing a dermatologist, then?” “Why don’t you already see a Rheumatologist, then?” “Have you had ANY X-rays?” 

I don’t think I’ll be pursing that relationship. Yesterday as I tried not to cry at my PCP’s office, I explained my frustration. He agreed, he’s frustrated, too. He wishes he’d told me not to get the flu shot. (Also, if you are a vaccine wakaloon, bugger off. I believe in immunizations, I know they work, and if you don’t think so you are a Luddite troll). Neither of us realized that it would create this autoimmune storm that can’t be measured or quantified. 

The thing is, if you are a middle aged woman with invisible illnesses and symptoms with no findable cause, you are……hysterical. It’s all in your head. You need to try to lower your stress, maybe take a walk, do some yoga, meditate. See a shrink (the double edged sword because if you admit to seeing a shrink well, you’ve just negated anything valid about your experience and will now be placed in the “Crazy Woman” category). Whatever you are experiencing isn’t real. My PCP thinks it’s real, but he is a nurse practitioner, and even so, we’ve got no evidence to support a hypothesis. We’ve got nowhere to go. 

I actually feel better today, so I guess I should be grateful. And I am, but I still don’t know for sure why any of these things happened to me or if it’s over or just pausing to ramp up again.  I have reached a balance of boredom versus fury. “I don’t care anymore” I say to myself, but I say it angrily.  I feel like punching someone, but I also feel totally over trying to do anything about it. I feel like I once again wasted time and money on the same old answer: We don’t know what’s wrong with you and we can’t do anything. Why did I do this again? I ask myself. I waited until it had been over 2 weeks of being sick from the shot to seek care, because I wanted to make sure it wasn’t something I should have waited out. Except I guess it was. Or my crazy gets better with attention. Jesus we have to live in such tiny boxes. 

Insert eye roll. I’m tired of all this already, and again.