Brain Fog

So today brain fog has caused me to head in the wrong direction of my appointments not once, but twice today and it has made me forget the pin code to my debit card. Thank god for debit cards that also act as credit cards or I would have then had to try hoofing it to my appointments where I would have probably walked in the wrong direction out into the desert somewhere never to be heard from again. 

Okay, maybe it wouldn't have been that bad as I was in the middle of a fairly populous city and wasn't too far from my house. But still. Having set out in the wrong direction for my adventures twice already I probably shouldn't take any chances. 

Funny though, because I don't feel particularly brain foggy but I sure am acting like it today!

Appointments

I get that specialists see a lot of patients, but still, 2 and a half to 3 weeks to get in to see someone about breathing issues is a little ridiculous. I am betting that, in the time between now and I actually get in to see the pulmonologist my breathing will have done one of two things. I will get worse to the point where I go in to the ER or I will be better and will go in to see her for nothing.

The life a person with chronic illness is full of stress, just a different kind of stress from what normal people are used to!

In Sickness and in Health

In Sickness and in Health

The above link goes to an article that talks about how men are more likely to divorce or dump their spouse who gets sick than a woman partner. Really, there's only a six percent difference between men and women who leave their sick spouses so it's not that much of a difference, but it is still enough to make me sad.

I know that not everyone out there has the strength to handle having an ill spouse; hell, not everyone out there has the strength to handle getting sick themselves, but you'd hope that the person you chose to spend your life with would stick with you no matter what.

It's very disheartening to learn things like this even though I don't have a significant other. It kind of reinforces some of the thoughts that I already think to myself when it comes to dating or relationships. I don't want to burden someone with the heavy medical baggage that I carry and it doesn't matter how often I tell myself in my head that the right person won't care, it's still enough to get me to push people away before I get into a position to be hurt.

Error 404 Vein not Found

I know this is so passe and last year, but I had to make one

I had to make this when I got home from my Rituxan infusion today, it was nice to have an oncology nurse that had actually heard about Wegener's and knew my rhuematologist.

On the other hand, this had been around a while so when she expressed some puzzlement over what was going on with my veins and IV that it had to make me laugh.

For once I had a relatively easy IV placement. She went in through the side of my arm just below my wrist, she got the catheter in on the first try and it seemed that the vein was going to take the entire catheter rather than just the very tippy end of the catheter like it usually does. Then when she checked the IV with saline it started to burn a little. I didn't think anything of it, except that sometimes the saline burns. When she put the steroid in the IV it really started to hurt so I asked her to check it again to make sure that the IV hadn't infiltrated. She un-bandaged the IV and everything looked okay so she decided to put more saline through it.

At this time, for some reason, I feel like I am about ready to pass out. Everything has gone down to a pinpoint, I'm starting to get a little sweaty, and shaky feeling. Not something that has ever happened to me when I've had other IV's (which has happened often enough I should know how I normally react) placed.

The nurse looks up from the IV site and says, "I've never seen one do that before." I was expecting a lump or some other signs of infiltration but she said there was nothing like that, but every time she would depress the plunger on the saline my entire arm from my wrist to my elbow would blanch.

We ended up backing the IV out a bit and everything worked better after that. We're not sure why it happened, but it's always interesting when you can show long time oncology nurses things that they've never seen before.

To Be, or Not to Be

If you've read my blog you know I've had some dark times since being diagnosed. It was hard enough trying to find myself after graduating college but then to get a diagnosis such as the one that I have at nearly the same time throws everything in the air.

Much of my crises had to do with going on disability at the recommendation of my rhuematologist and parents. I still wanted to work, I struggled to come to terms with my diagnosis on top of being told that I needed to stop working for a while, it was a while before I was able to find my stride again and to this day when people ask me about working or disability I find myself growing anxious.

It's not that I don't want to get back to work, I really do, but I also realize that the only reason I do as well as I do is because I am able to rest when I need and the insurance that I have through the state covers the treatments I need to be able to feel better. These thoughts also invariably bring up the thoughts of "Am I sick enough"?

I don't know if other chronically ill people go through these same sorts of thoughts, but I always hear other people's stories and then compare it to my own situation (usually seeing them post about their worst days while I am having a good day) and then think to myself that I should just suck it up because I don't have things as bad as the other person.

It really doesn't help when people tell you that you look good, even when you're feeling terrible. I think that's what's so insidious about chronic illnesses; you learn to put on a front and you learn it so well that people start to assume that you really are better.

Sleeping is the Best!

Watching my dogs laze about made me think that it would be nice to live their lives, and then I realized that, my life isn't that much different from theirs at the moment.

I sleep, get people to make me food, and do my best to take care of myself. My sister told me that all I need now is a food bowl with my name on it. Thanks for that.

I've got to make light where I can, personally I think that little anecdote up there is kind of humorous and people that aren't chronically ill are probably thinking that it would be nice to spend their time like I just said I do. But they are only seeing that part.

What I haven't mentioned is that the reason my life seems so relaxing and ideal is because I don't have the energy to do much of anything else. Even things that I really want to do.

This past few days was Fan X, a local Comic Convention here in SLC that takes place in January and I had to miss it. I would have loved to go, I love these conventions, seeing the costumes and interacting with other fans.

There were two reasons I could not go, though. The first being that due to people deciding not to vaccinate their children there has been a measles outbreak in my state. Measles and being on immunosuppressants don't mix. So thanks all you anti vaxers for being unaware of how your choices effect everyone else.

Secondly, even if there hadn't been a measles outbreak I wouldn't have been able to go because I did not have the energy to get out of bed at all this past week. I'm pretty sure that my kidneys are failing again. I have all of the symptoms. I tried to get in contact with my rhuematologist but only managed to get their less than stellar answering service who tells me I have to call back when I tell them I want to leave a message, because taking messages isn't something that answering services are supposed to do or anything.

Hopefully soon I will be able to get my infusions going again so that I can start feeling better. But until then, I will live like my puppies and only worry about sleeping and taking care of myself.

Thanks for reading this ramble.

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.