Limbo

Wow. This sounds like one of my titles to my old blog posts when I didn’t know what was wrong with me, was SURE there was something up and was waiting for the test results to prove it.

How wrong I was…The tests did show it. But those who looked at them were blind.

And on a side note. Here’s another reason (as if one should have ever been needed) to not say to someone who’s found out after over a decade of searching, that they have an incurable progressive disease, “Hey, at least you know what it is now!”

Firstly, it’s not much of a silver lining finding out that all the years you sought a cure, there was none to be had at all. s I’ve said before. I wasn’t looking for a name, I was looking for a cure.

And today’s reason? Knowing doesn’t reduce the suffering that made the person seek help over and over again. Knowledge – in my case- didn’t change anything. It just gave a name to the grinding, grating hip bones that feel like they’re going to grind each other into powder when I walk.

It means I knew why I woke up with stiff fingers that Mr immediately noticed were swollen. It didn’t get rid of the pain nor the swelling and knowing doesn’t help when even the things I can try to help reduce the pain, cannot be tried.

And thus we come to “limbo.”

My girl’s knee started swelling. Not the same area that it began in last week, but Sabbath (Saturday) when I had to remove her dressing and clean her up, we both definitely noticed the raised area on the side of her knee. And even photos showed it.

Yesterday, the area was still there, and has been warm to the touch. Not good. And she tells me today that she didn’t sleep last night because of pain. Even worse.

I’ve never had a surgical wound that was left open, so I don’t know how they behave as they heal. So I sent photos to the paediatrician. They said I need to see the surgeon today.

I contacted the surgeon…She’s operating all day today.

Limbo.

In the meantime, we continue with antibiotics. And I try lie down and hope it’s something that won’t need hospitalization.

My poor angel is scared the infection will never leave and she will need an amputation. I told her we have much more we can use in our arsenal of weapons. Amputation isn’t an option in my head.

And hey, maybe it’s not even infection anyway! I don’t even know if I SHOULD worry. I just know heat and pain when there’s been infection are bad signs. Add increased swelling, and no idea what the next step will be and WHEN it will be.. and we have..

LIMBO