5.19.08

I have not blogged in some time, sorry. Honestly I do not know what to say. There is no change, which is good. And there si no change, which is not good. It is like a grey limbo. How do you update people on something like that? Anyway, what I decided to do was cut and paste two emails that I sent to friends (friends, please do not mind I'm doing this. It is easier on me. Thanks) when they emailed me asking for specifics. It's the easiest thing I can do right now, to just share with you what I told them, b/c I don't really know what else to say. So here goes:
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So how is John? ...

On 5.14.08 I wrote:

"Thank you for asking. I have no idea how to even answer that. People see him out and about so they think everything’s better and fine but its not. He still is on steroids, insulin, chemo and blood thinners. Yesterday he had the most minor cut shaving (around 6pm) and when he woke up this a.m. it was STILL bleeding. He has been getting some of the vasculitis spots back, they precede a full debilitating wave, and we hold our breath for two days and they go away. We exhale, and they come back, we hold our breath and they go away. It’s like the disease is playing tease with our mental health while letting the physical health stuff stay relatively at bay. I’m not sure which is worse. And his legs are SO swollen and puffy. It’s that kind of puffy where when you push on it it stays pushed down and doesn’t puff back to normal shape. They are like play dough. And they hurt. He’s in constant pain. But he hates being sick so he pushes through and people see him out and think he’s all better.

I don’t mean to go on and on but people are simply not getting the fact that although he may not be in the hospital or covered in spots, he is still suffering from a painful and inconsistent and potentially fatal autoimmune disease. And he’s so upbeat with people. It’s only me who sees what’s really going on. On top of the pain he is in constant fear that it will debilitate him again and he so hates relying on people and he’s so sick and tired of being sick and tired that it’s wearing on his well being, even though he hides it from people.

Ugh. Again, I’m sorry. And thank you for asking. No one else really asks. They just all say, “oh I saw john out and about that’s so great that he’s all better” and just assume. We’ve learned to just smile through it and then go home and call them assholes. Not that anyone means ill, but holy cow, ask, don’t assume, ya know? I’ve learned a lot about how to treat other people who are sick or love someone who is sick. I’ve learned not to assume."

On 5.15.08 I wrote:

"I need to blog about john. It’s all just so mucky. He's not good. He's not bad. He's not sick. He's not well. One day is fine. The next is nonstop pain and swelling. And the steroids are taking a toll on his disposition. I am worried. I am worried about him b/c his 'recuperation' seems to not be, ...right? I don't know. Something's off. Something's not right. It's not just me, I don't say anything but he brings it up b/c he feels it too. But, ya know, how do you blog all that? It's all so, ...vague. But I feel something is "off". I don't know how else to explain it. "

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Today:

So there, I've blogged it. You can all do with that what you want. If you're one of the people who assumed, don't feel bad, lots of people did. If you like to pray specifically, I'm not even sure what to ask you to pray specifically when the whole thing is so vague. ...Pray it gets less vague? I just don't know. I just know I see him wearing down physically while trying to keep up this good mood and it's exhausting him. Do not get me wrong, this could all be TOTALLY worse. COMPLETELY worse. I know that. And it was. And it's better than that. We know that. We count blessings every day. And still, ... this is just lingering over him like a stubborn fog that will not raise.
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