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.