Wednesday, February 25, 2015

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.

Thursday, February 19, 2015

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.

Sunday, February 1, 2015

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.