Wednesday, January 21, 2015

Flaring and a Book Review!

How does one tell that they are flaring, you may ask?
Well, one of the ways I can tell is the amount of blood that I spit up while I'm brushing my teeth. Another is the amount of pain I usually am in, also, if I sleep for 16 hours a night and then wake up only to fall asleep while I'm sitting up not even four hours after I leave my bed is another good way to determine just how active my disease is being.

Of course there's always the fall back of what sort of stuff is coming out of my nose and lungs and how many sores I have in my mouth and on my skin, but that's only if you want to really get technical.

In other news, I can't have any Rituxan until February because my insurance at first didn't want to cover it, then they said they'd pre-approve it but that it would only be pre-approved for February. At least it's only another couple of weeks. I've never had this issue with state insurance before, only when I was still on my parents insurance did I have to fight to get my medications.

Ah, well. It is what it is. On to the second half of this blog post.

I finished Lock In a few days ago and I loved it! You can really tell that Scalzi did his research when it came to disability. There were a few things that I wonder if he is going to cover if he does any sequels, though.

First, I would have liked to see some people that had Haden's actively wanting to have their Haden's cured. In the disability community chronic illness is a subcommunity that can sometimes feel left out when it comes to the positive messages that circulate within the larger disabled community. Often times people with chronic illness want a cure, they don't view their bodies as being differently abled, but as something that they want corrected. This is an attitude I expected to see within the Haden community as the locked in symptom was due to an illness. I could imagine that many people who got Haden's when they were older would have more of this view as opposed to the younger people who are locked in and have grown up living in the Agora.

I also would have liked to see more interactions between people that were locked in and were using Integrators. That was a situation where it would have been interesting for the author to explore the idea of invisible disability. There was a short bit where this seemed to be brought up, but it wasn't explored with much depth. People with invisible disabilities are often treated poorly because they "don't look disabled" enough so others feel that they don't deserve to use the disabled parking spaces or they are ignored when it comes to discussing things that effect the disabled community.

I really liked how Scalzi brought in the issues in medical funding and what would happen to people if they were suddenly faced with losing their disability status. In my case, I would be dead if I were unable to have state provided insurance to help cover medical costs. Scalzi also brought in the rarity of those suffering from Haden's that were locked in and how much of a glut happened in research into their issues because of the famous people that caught Haden's and became locked in. Having a public face to put on a disease is the easiest way to get funding for a disease; without funding people that end up with rare disease have to struggle and fight to get treatments. 

I really, really enjoyed the novel and I hope that Scalzi writes more in the universe he has created.  He was able to touch on all of these subjects within a story where the main focus was a crime mystery. I wish more authors were able to understand the importance of detail in their world building when it comes to stuff like this.

Thursday, January 15, 2015

John Scalzi's Lock In

I read a lot, and by a lot, I really mean a lot. One book that I am very excited to get into is Lock In by John Scalzi.

This is a sci fi book that deals prominently with disability. And probably contains some spoilers even though I am not far into the book yet.

Cover taken from the Amazon page where this book is sold (see link above)

The plot takes place in a world where a flu like epidemic has caused certain people to suffer from locked in syndrome where they are conscious but they are a prisoner in their own bodies. As some of you probably know this is a real thing that has happened to some people, not neccesarrily the flu portion, but the locked in portion.

In this world there are people that caught the illness but instead of being locked in they became able to allow their minds to be shared with the people that are locked in and so offer their services in that way. The main plot deals with a murder that has happened by a person who was allowing themselves to be controlled by a person that is locked in (at least that's what I think anyway).

 I am only 50 pages in and I've already seen some promising things about disability representation. I wonder how much invisible disability will factor in since some of the characters are able to put on a new body and so they would not physically show their disability as opposed to the people that use a robot like structure that makes their locked in status very visible.

There is also an overarching issue where the government feels they are spending too much money on the people that are locked in and the resulting cut in funding would leave countless people that are locked in with no way to support themselves and no hospital care. The reasoning being that, with all the "options" available to these people to interact with the public and hold down jobs that these people shouldn't be classified as disabled anymore so they should not get the support of the government.

I think that this is very poignant in relation to some of the things I've seen happen to disabled people. There are actual people out there that assume having things like handicapped parking, ramps, and special seating on public transit are privileges that are undeserved instead of a way to let people of varying abilities participate. That and the way that people that are on disability benefits are always living in fear of the government coming in to take away what meager living and healthcare they receive.

I've only gleaned this from the first 50 pages so I can't wait to see what they rest of the book holds in store!

Happy Anniversary

Somehow, my fourth year anniversary of having been diagnosed has come and gone and I didn't even notice until after the fact. Is that what they mean by "the new normal"?

I'm meant to be getting Rituxan soon. I started it while I was on my blog hiatus so I don't remember if I've mentioned having to go on it before. It works wonders! Really! For a short time I was able to stop taking the evil that is prednisone for a few months until I started having disease activity in my eyes. Since then I've been on a low dose and we're hoping that if I get on a more regular schedule of it I will be able to stay off the prednisone.

If you haven't struggled with that drug before you don't know how much that thought excites me!

Wednesday, January 7, 2015

A Friend in Need

This is a call out for help for this young man, he is a friend of mine, I met him through the vasculitis support groups on facebook and he has been through a lot.

His name is JJ and he has Granulomatosis with Polyangiitis (Wegener's) like me that has really messed up his lungs. On average, he has one surgery per month just to help him clear out the gunk that accumulates in his lungs so that he can breath. It is impossible for him to keep living this way, but he cannot afford to make the trip to see the expert that he needs to that could really help him. He spent last year's holidays in the hospital and this year he had to spend the holidays sick in bed instead of with his young son and family.

I know that money is tight for many people, but even if you could share the link to his donate page on facebook or wherever it would be wonderful.