The View from the Bottom Step

I'm raising my white flag.

I sit at the bottom step looking up at where I came from. I didn't arrive here with a thud. Nor did I arrive at the bottom. as I would have expected with a slow, careful descension; step by step.

It's taken a few weeks to get here, feeling as if I've been tripping my way down the stairs clawing to grab onto a rail, a step or by some miracle a tremendous gust of wind to nudge me back up a step or two.

The quick decline in my health has been horrifying to me. I've tried to keep some normalcy; cooking a couple of meals a week, keeping up with the laundry, even driving my daughter to school once in a while. At the very best I've even been able to do two photo sessions with clients.

At its worst, I realize that this is all slipping away from me very quickly right now. Most days are spent in bed lately, trying to keep my mind off of the pain that seems to be settling into other bones with a burn that at times is nearly intolerable. Trying to save up enough energy to do a few simple tasks each day. Trying to ignore that my pacemaker kicks in all day long to correct a heartbeat that refuses to keep steady. Trying to keep the relentless fever under control. Watching so much slip away from me.

October was especially hard to deal with. It's the month that as a photographer I would have been out in nearly every kind of weather either photographing families for their holiday pictures, or capturing the fall colours in their glory for the galleries that sell my work. Although most of them have dropped me in the last year because I've not been able to honour my obligations to regularly provide new images.

Last night my doctor called (yes, a Saturday night) to check on me. We're back in to see him tomorrow and by the sounds of it he's ready to try to help me pull out the big guns. Enough of this being stoic and trying to handle the pain and discomfort with a brave face. It's time to admit that I need more help than perhaps I've been letting on.

Within minutes after the doctor's call, I received some very sad news. One of the members of our ECD support group passed on this week. Only 33, leaving behind a young daughter. My heart goes out to her loving, and beloved family.

This really is an evil disease.

The Mirror is Not My Friend

However, my husband and daughter most definitely are.

I'm looking pretty haggard these days. Lack of sleep and everything else going nuts in my body have me hardly recognizing myself these days. I've lost the steroid chipmunk cheeks and about half of the steroid weight so far - but all I see are sunken eyes and a rather unhealthy looking tint to my skin. Yesterday I came across a photo of myself taken about two years ago and I seem to have aged at least ten years since then.

But every single day, both of my sweeties tell me that I look beautiful. I'm grateful that they can see past what I'm seeing in the mirror. Or they've both become great fibbers :-)

One upside - every year I dress up as a witch at Halloween to dish out the treats; this year I won't need much make-up to look convincing!

Not a No

Yesterday was hospital day. It was the longest I'd gone between appointments in two years, and I'd had high hopes that there would have been a significant move forward towards the next treatment.

No such luck, but in all it was still a pretty good meeting with my lead doctor. We're in agreement that my health is declining and that we have to come up with some sort of treatment plan. My wish to try Kineret hasn't been shot down, it's still being considered - but we're going to take a different path. I'll be meeting with the doctor/researcher who obtained the Enbrel donation for me - and have him assess me in person and decide on the next step together.

He is however, renowned in his field and lectures around the world frequently - so getting in to see him might take awhile. That's the hard part to swallow - as I get weaker and the "good days" become less frequent it's sometimes difficult to be optimistic about the road ahead. I can't help but hope that the Kineret (or something else that is prescribed) just might be the miracle treatment that improves my quality of life. So I'm not wallowing, right? Still looking forward. Most days.

Yesterday's appointment felt far less clinical than usual. It was an honest discussion about how frustrating it is to treat an illness about which so little is known, and how treatment options have so far been hit and miss with the small number of patients around the world.

I felt that we were skating just above the admission that we seem to dip towards at some appointments. Unless I'm careless crossing a busy street, this illness is what will end my life. My doctor has a way of asking questions of the two of us (my husband is almost always with me at these appointments) to see where I'm at mentally with all of this. Actually where all three of us are at; my husband and daughter suffer through this just as much as I do in their own way.

Yesterday I felt emotionally strong and I hoped it came across that way to my doctor. I sometimes think about the seven stages of grief - and believe that I tend to bounce quiet a bit between them. Up a step, down two and back up again on the ladder. Yet I think that he could read between the lines; the only change to my prescriptions was to make sure that I get outside for ten minutes a day. Drive (or get driven as is the case most days now) to a park, sit on a bench, or walk if I'm up to it - but get outside of the house.

I've learned much about myself in the last two years. I'm as human as everyone else. And I have to forgive myself for not always being Miss Optimistic and Strong. Bad things happen and I'm not weak for sometimes thinking that I got a raw deal in all of this.