Giant Cell Arteritis

Well, this is a new one on me!

Yesterday was enlightening to a certain degree. I got some answers which have definitely relieved my mind a lot, but there are still a lot of unknowns. As anxious as I was, the time dragged until we got to Virginia Mason Hospital in Seattle. The place is enormous but well-organized and signed so we found our way to the Rheumatology Department and waited. Of course we were early!

I like the doctor - Jeff Carlin - nice sense of humor and seems to be very knowledgeable. So we went through everything that had happened chronologically and he asked numerous questions then did an examination. He had a sheaf of papers of all the tests and procedures I have already had. So then came the Clinical Diagnoses of Temporal Arteritis or as it is sometimes known, Giant Cell Arteritis which is inflammation of the lining of your arteries - — the blood vessels that carry oxygen-rich blood from your heart to the rest of your body. This diagnoses explains some of the things that have happened but certainly not all of them. So I still have to have a temporal biopsy (under local anaesthetic they take a piece of the artery from my temple and diagnose from there) and they drew pints more blood.

Of course, I am scouring the web (good or bad thing?) to find out more. Wondering if the rest of the family might be afflicted with it? Is it what caused Mum's death?

But the upside is I have a name for this and I am so grateful to Dr Griffis who saw me through all this. If he hadn't done what he did, put me on a huge prednisone dose, I could be blind by now as the single worst thing that happens is damage to the optical nerve that can blind - boom, painlessly and instantly and irreversibly. And I don't know how I could live being blind.

So now - here I am physically getting better, thank goodness so I won't be house bound any more. But with huge life-style change decisions ahead of me. The most obvious one is removing all - or at least the bad - stress from my life. And right now I don't know what that looks like. Talking to Zoze this morning, she said "You're too conscientious." And when I think about that, I know she is right. So I must think about that and figure out how to let that go - I take on far too much stuff that I don't need to absorb. Stuff that belongs to others who should be handling it, but because I "conscienciously" pick it up, they let me. That includes clients, family, Michael etc.

But the changes are going to take time - these are not things to instantly jump into. I want to do this right, first step getting my strength back. Then learning more about this weird stuff and learning to handle the side-effects of prednisone - reduced now to 40mg but still a big dose. It feels like we must probably put off the Central America trip for a while - mainly because we should have booked our airfare by now and since I won't have results from the biopsy, scheduled for Dec 2, until later on that week, the fares might be outrageous. However, I am not going to definitely say we aren't going. I don't want to lose that beacon of sunshine that has been lighting our gray weather!

But I do feel better and I want to thank everyone for their thoughts and prayers and phone calls which really help!