Tired

My son twisted his ankle on friday night. A sort of frequent occurance that we can now blame on having EDS . Saturday he came down with a cold that turned into brochitus Monday night. After a trip to the doctor for a breathing treatment and a scrip for antibiotics he is doing much better.

Today I also got the results of the echocardiograms my kids had on Monday. Thankfully both were in the normal range, (they measure the aeortic root diameter) but they said my son was on the high end of normal and should have another echocardiogram in two years instead of five years. Now I just have to find a doctor myself so that I can get my echocardiogram. We are supposed to have them every five years from now on. My nephew who was diagnosed with EDS first is in very bad shape physically. They are putting him in a wheelchair because his shoulders kept dislocating on crutches. The doctors say that his ligaments should eventually start tightening up again and then he can start doing hydrotherapy. Hopefully some of the damage can be reversed, although he will never be pain free. It is hard to believe that normal fitness activities, most sports and workouts can cause my family permanent debilitating damage. The genetecist said no contact sports, nothing that has repetitive impact on the joints, no weight bearing workouts or excercise that would involve stretching or lengthening the tendons. My yoga days are over :(

Work Space

This was my sewing table when it was first built by my brother in law. It has a 4 foot by 8 foot surface. I have insets so both my Bernina and Pfaff set into the top. It is tall so that it is comfortable to work at standing and the bottom shelf is just the right height to set the foot pedal when sitting on a tall stool.
This is my sewing table now.
This was my studio in Los Angeles. Of course it was never this clean. This was photographed when the house was for sale.
This is my studio now. Everything is still in boxes. I can not set anything up or unpack until we extend the third floor in our loft so that my son can have a bedroom.The construction for this expansion of the third floor will happen directly over the area where the studio will be.





















The purple represents where the floor will be extended across to the far wall with the window. My daughter has the room on the second floor below this.

The photo below is from a slighltly different angle. We will open up a doorway from the second floor, now it is just an opening to look to the floor below. We will have a stairway going up to the new room from here. My sons room will be the existing 3rd floor room on the other side of the truss once we close up the walls and add a door.

Yarn Dyeing

Yesterday I had a lovely day out at The Fine Line Creative Arts Center in St. Charles dyeing yarn. What a fabulous facility, kinda makes me wish I had moved out to the burbs to have easy access to this place. They have a whole room of looms, a pottery studio, a fantastic wet lab where we dyed yarn, a jewelry studio set up with sautering irons and torches for glass and more rooms for basketry and bookbinding. What a dream. Laura Wasilowski was so kind to give us her time and guidance to embark on this adventure. My friend April came along and we were joined by art quilter/knitter extraordinare Emily Parson and three of her knitting pals.

If I was a better blogger I would have thought to bring my camera and take pictures, but I was too focused on bringing my yarn and supplies for dyeing. Hopefully Laura will send me some pics that I can post. She always brings her camera everywhere to document things. I noticed Melody, Laura, Freida and Emily are so good about this.

Just after I posted this, I checked my email and Laura had sent me this picture of April and I rinsing out our yarn.

Ehlers Danlos Syndrome

My kids and myself (as designated genetic carrier) have just been diagnosed with Ehlers Danlos Syndrome. My sister Deb’s 25 year old son was diagnosed with this last fall after suffering chronic joint pain and weakness in his legs. For many years he did a lot of break dancing and martial arts and more recently extreme yoga which has damaged his joints. He is now walking with the aid of metal crutches.

Ehlers Danlos is a connective tissue disorder which presents itself in may different forms. We have the hypermobility form. Which means my family could have descended from pretzels. We are all very flexible, our joints bend beyond where they are supposed to. Unfortunately for us it means our bodies do not produce the collagen needed to keep us flexible over time and if we are not careful- early arthritis. This would explain why I can not do the Lucky Shie style of handwork, as much as I would like to do it. In 2001 when I lived in Austin my art quilt group had a four day workshop with Lucky and my thumb has never been the same. Any stress on the joint causes pain. So now I have a valid excuse for avoiding handwork and doing everything by machine.

At this point my kids are perfectly healthy, we are lucky to have found out about this so that we can hopefully prevent the damage that my nephew is now dealing with.

Alien pod thing

I love the way this thing looks. Actually I altered this in photoshop. It originally looked like this.

We used to find these on the hillsides up above our home in the canyon in Los Angeles. They grew on a vine, sometimes along the ground, sometimes hanging from a thin stem with the vine coiled tightly around the branch of another bush or tree.

The National Bisquit Company

This is a picture of our building, taken sometime between 1910 and now. We have the top corner unit, the row of three windows in the pop up section and the row of windows below.