APS awareness month

Dear sisters,

In June it is APS awareness month.

APS is an abbreviation for Antiphospholipid Antibody Syndrome. APS is also called APLS or APLA in the United States and Hughes Syndrome or Sticky Blood in the UK.

APS is an auto immune disease associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness."

As you know I was diagnosed with this cheerful disease 6 years ago. There is still too little known about this disease, so I am posting two videos about it to help get the word out.





S1

porn palace on ibiza

13 women
a house with black shiny furnishing, cow hides and mirrors, naked women on the walls, a pool overlooking ibiza town.
lost luggage
rain and wind
sun and the prospects are good.
found luggage
lunch at 3, dining at 11 pm, maybe breakfast before noon tomorrow
what a lot of women.

S1

tuning in to the happy station

After the Castro theatre singalong on Boxing Day, The Sound of Music mania has hit Antwerp...with thanks to M.I. in Bahia, Brazil!!!
S2

returning to ya

Dear Sisters,
Where have I been? You might wonder. I am only just starting to take stock of all the lovely experiences that have bestowed themselves upon me. A gift unexpectedly came to me on March 23rd, which took me to Holland, The Hague to be precise, where the clean air, kind people, good working circumstances all kickstarted me into Bright Spring and out of the Dark of Winter. I saw the leaves come out on a tree outside the studio window, the place that was lent to me for three weeks, with a few days' extension on the end. A singing lesson conveniently came halfway my stay, of which you see the image. The luxury of meeting and being with new working friends, with whom to share a language, also does a world of good, as I am sure you know. (thank you by the way for Elizabeth Gilbert's speech two posts back, it has that kind of effect). There is also a tale of singing on a roof overlooking the golden Place Stanislas in Nancy....watch this space! I just need to place a few words already to unlock my tongue. I miss you and look forward to seeing you.

Many more things to say. We will keep it at this image, for now. A special homecoming it was for me too, because I returned to our place of birth as well!
Bug higs! All is well from the new perspective.
S2

a morning at the dentist

I don't know what the hell she's doing, but it certainly doesn't sound good.
The lamp shines into my face, the right side of which has dissolved. My tongue lies double, parched, in the back of my mouth restricted by a green rubber mat, clamped and stretched over my molar, a hole cut into it to let me breathe.
I jump at unexpected pressure within my mouth and my hands, clasped tightly on my lap, now grab the side of my jeans.
"Are you alright?" she asks. "uuuuh" I say.
I must relax. There is no pain.
I breathe as deeply as possible through my nose, which comes out again as a hiss, and force my shoulders down for a few seconds before they scrunch up again. She has picked up a new drill, bigger it seems. And she has stopped explaining what she is doing.
This cannot be good.
The sound intensifies, right next to my ear. And I smell something burning. She must be reaching the nerve soon. I imagine her drilling through the tooth and suddenly breaking through to a soft center.
I am bracing for impact.
My eyes roam upwards towards my dentist. Our eyes meet for an awkward second. Quickly I return my gaze to the ceiling tiles with a black spot in the right hand corner, before I swerve my eyes further along to the window. I only see the top of the window and a triangle of blue.
Air from a large rotating fan in the corner moves quite fiercely towards us. My dentist is experiencing hot flashes, she says. If I want a blanket I should just give a shout.
I just want it all to stop. Is it not finished now?
Why did I decide to go for a gold filling and not just stick to metal alloy? I will be a gold toothed woman.
My dentist has started talking again, after I jolt one more time. She has Ukranian patients she says, who refuse any kind of anesthesia. Even their kids come here and don't give an inch when she drills their teeth. Isn't that unbelievable?
Yes, unbelievable.


Proud relaxed owner of a gold tooth inlay.


S1

On having a genius

a nice idea about creativity and inspiration.

S1

another week in sf

Dear sisters,

A and I went dressed up as Scott and Charlene from Neighbors to a 40th birthday party with an Australian theme. Besides the host, we were the only ones that actually dressed up, because as you know we take our themes seriously. The Americans at the party had no clue who Charlene and Scott were, they did not even know who Kylie Minogue was, let alone Jason Donovan. It is scary to now be aware of the void of understanding between us. They thought Allard had come dressed as a German talk show host and that I usually wore shoulder pads extending up and out.

The now seven year olds birthday came and went with lots of lego, a treasure hunt, and the annual sleepover. The sound of four boys screaming at the top of their lungs, just for the fun of it, is a unique natural phenenoman to be missed at all costs. I spent the next two evenings building Lego sets and got quite into it.

I spent a full Saturday at the ER with a swollen knee I had been unable to bend. All the interns got to feel my knee and practise their patient interviewing techniques; "so your knee is troubling you, could you tell me if are you are sexually active?" Who do you prefer, men or woman?

Are there sexually transmitted knee swellings?

I was on the verge of saying something laid back like that, but suddenly I turned red and mumbled" uh, ..I am married". As if that answers the questions. The guess was that there was fluid in my knee as a result of my blood thinners, the rat poison working too hard, but the knee is much better now, thank you. Back to yoga.

Speaking of which. In California, it is just a matter of time before one goes from practicing yoga to participating in yoga protests. I spent a few hours being an extra for the filming of a yoga class, to raise awareness for the capture of the two American journalists in North Korea. We had to look uplifting and chant mainly. I did not know the words but they sounded like "Touch my tree, goody, hey, mani mani. Over and over again: touch my tree. I think that's what it was.



Queensday was celebrated in SF too, with the Dutch and friends of the Dutch in the Supperclub. This year we decided to wear orange. There was a blue bunny walking around that got a lot of attention. We like to think he has a really boring day job, for which he has to wear a grey suit all day. The party went ahead despite the attempt to assault the Queen earlier that day, back in the low country.







Love, S1