For those of you who didn't see
this all play out on Facebook. I went to the Dr. I just knew something was wrong. I knew it wasn't diabetes related. I knew it wasn't a migraine. And honestly, I was kind of terrified.
Possibly not as terrified as I was when I got to the Doctor and looked at her eye chart. With my only good eye (my left eye has been pretty useless at eye charts since I was nine, only seeing about the top 3 lines), I was able to see only the letter on top. I could see that there were two more lines under it, and that there was a somewhat rounded letter, but couldn't make out what it was. The lines under that were as good as invisible - I didn't have enough focus to see that there were seperate letters, let alone what they were.
That was a jolt. I knew it was bad. But you know how sometimes you wonder if you're just over reacting? Sometimes you want to follow your gut, but you're sure someone's going to roll their eyes and it will turn out to be nothing.
And I knew, with my suspicions of what it was, that we were kind of
looking for zebras. The chances of me having this condition are so remote. But I met some of the criterea - my
CRP was already high, as was my
Sed rate and my white cell count, In of themselves, these are not necessarily diagnostic - all are synonymous with acute inflammation in the body, which of course can come from other things. But with the type of pain I've been suffering for the past 6 months, and negative ANA and Rh tests, PMR was becoming suspected.
Then on Tuesday night, I had a low grade fever (had had that for a couple of days), severe, sudden onset headache, different to the ones I usually suffer. Terrible neuralgia over the entire right side of my head. I could feel the artery under my skin around my temples. And the sudden loss of vision. Combined with our earlier suspicions of
PMR,
TA was looking possible, however improbable it ought to be.
As I mentioned earlier, I have a working diagnosis (which will be studied more closely and confirmed or whatever by the new rheumatologist at the end of July) of
Polymyalgia Rheumatica. It is absolutely a disease of the elderly. It is extremely uncommon to be diagnosed with it under the age of 50, and in fact the average age of diagnosis is 68-70. I am 35.
Out of those elderly people with PMR, about 20-25% develop a complication called
Giant Cell Arteritis, or Temporal Arteritis (the names seem to be mostly interchangeable). I'm not a Doctor, so I can only tell you the bare facts. Jenn would know more than I. It is a type of
vasculitis that causes inflammation in the blood vessels leading (in this case) to the brain.
Anyway, after some wrangling with Joel's work (to get him to be able to come and get me - I couldn't drive) and me sucking it up and putting my big girl knickers on, I went to see the Dr, half convinced she'd send me on my way with some Nurofen.
She didn't. She examined me. Did the eye test. Palpated my scalp and jaw, looked into my eyes. Ordered immediate blood tests and CT on my brain. Then went ahead and started the high dose steroids.
In about 36 hours (she had me take an extra dose on that first day, to try to give myself that extra chance of reversing this), my eyes had responded. I would say there was about a 60% improvement by the time I saw my GP on Wednesday. The headache was back with a vengeance, but the eyesight was improved. I was pretty thrilled with that improvement. He was much less enthusiastic. He didn't come out and say it, but he indicated that he'd have liked to see it all come back by then. And that whatever hadn't returned by then, simply may not.
So this is where we are now. Long term steroids (which given my diabetes, depression/anxiety and stomach ulcers will make life more complicated) and close monitoring every week or two until I see the Rheumatologist.
And I adjust to the new normal. I can see the boys faces again. I can read big signs. I can't read normal print at this point, but my computer font has gone from 200% down to about 150%. Am heading to the library today because I'm so desperate to read, I'm heading to the large print section.
I'm sorry. I never wanted this blog to be so one-dimensional. I don't want it to be all about the woe-is-me health issues at the moment. But in all honesty, right now, that's where our lives are at. Especially this past week. It's been more than a little frightening to have so little control over something so major happening to my body - and the thought of it being permanent (or worse - a stroke) left me agitated and Joel even more so.
He's struggling, my love. Worried. He's usually a 'things will turn out' kind of guy. Almost a head-in-the-sand kind of guy (it's one of our biggest differences). Not this week. It's clear his mind is all here, fretting, researching, worrying. I feel horrible for putting him through this. This isn't what he signed up with. I know we said "in sickness and in health" but he's had to put up with an awful lot of the latter, for almost our entire marriage. Poor guy picked a lemon!
Not the most upbeat Flog Yo Blog, but here it is anyway. It's being hosted this week over at Where's My Glow. Head on over and join in (I started this yesterday, while it was still Friday here. It's still Friday somewhere, right?).