Saturday, June 28, 2008

In tears.

Been a rough while.

So I have systemic lupus.
With central nervous system involvement.
Which relates to my migraines.
I've had strokes.
And seizures.
And hallucinations.
I have a 50% chance of living through the next 5 years.
I have a coagulation disorder and will have to take anticoagulants for the rest of my life.

The family biz where we both work is in trouble, and I don't think it's going to make it through the next year. But how will I get another job, being this stupidly sick. So far this year I've been in Emerg. five times, spent a week in hospital and had several dozen doctors appointments, and blood tests at least once a week. It's so great that I live in Canada, but how will I get a job.

How will we live? What will happen to us?

On some level I want to sell the house and spend the next five years traveling around North America.

Today I had a wierd crazy hallucination. Either it was a minor seizure in itself, or it was the aura for a larger one...if so then either I have managed to head the big one off, or it is yet to come. I felt wierd this morning, then the hallucination, and then a big fat headache. I know it's partly related to being menstrual, and to the insane weather, but it still sucks. Now I have taken the pill combo that fixes my headaches, but I have to watch out for stomach bleeding, what with the blood thinners and all...