Just a Little Reminder

that good things can take a long time to happen.

I know it seems like it will never come, that you will always be stuck in the same place. But remember those terrible platitudes people are fond of saying; Rome wasn't built in a day, the caterpillar has to take some time being a chrysalis before it becomes a butterfly, and it can't rain all the time, etc.

If you just keep persevering, things can get better. Your life may have turned out different than you thought so you just need to keep going. Even if it hasn't turned out exactly the way you wanted, doesn't that just make it all the more enticing to see how things will turn out?

Keep pushing for remission(s), keep pushing to realize your dreams, keep pushing through whatever crap has you bogged down so you can see what comes next.

Oh, and here's another platitude for you: You've survived 100% of your worst days so far!

I Don't Want to be a Mummy

Yes, you read that right.
No, I'm not just saying Mommy with an accent.

Today I had a check up for my sinus surgery so of course that means you get the scope. I don't actually mind the scope all that much, and maybe I'm weird but I like watching the camera move through my sinuses and throat.

Things did not go as planned, though. The sinus that was by far the most damaged is not healing correctly. The skin looks like the skin of my sinus was trying out for the part of Freddy Krueger; all red, inflamed, with sores, and pits and what have you. There was also a scar band started.

That scar band is why I titled this "I Don't Want to be a Mummy" as we saw it on the screen and the doctor suddenly hands me the end of the camera with a "I'm going to need both hands". He then proceeds to pull out of a drawer a giant metal hook with a blunt end.

Immediately, I knew where that hook was supposed to go and I also knew that it wasn't going to be a pleasant experience on my part as thoughts of 6th grade Egypt Studies flashed through my mind.

Anyway, the doctor proceeds to shove the end of the hook in my nose and press it against the little band of scar tissue. And he presses some more. And more. My head was actually being forced backwards as I held the camera in place, but still, that tiny little band must have been made of steel for all the good the hook thingy was doing.

Luckily for me, the doctor decided to stop and we are going to wait and see if A: the scar gets bigger and B: if Freddy Krueger continues to take over the inside of my sinus.

It would be nice if things went smoothly for once, but that's not really to be expected with vasculitis.

Things That Really Grind My Gears

I may have already shared this picture during awareness month, but it works for this post.

When I shared the above meme in some of the vasculitis groups some people commented that we need to give the doctors a break. They study so many other things that the less than a day on average devoted to rare diseases is really all they can fit in.

I understand that. Being a recent college graduate (Bachelor's level, not post graduate level) I get that there is a lot of stuff that goes into being a student and there is no possible way for a person to learn everything about every disease out there. So then why is it that doctors have to fake that they do?

I don't know how many times, how many patient stories I've heard that boil down to: My doctor had no idea about vasculitis but decided to fake it. Or the ever present: My doctor had no idea about vasculitis so they refused to answer any questions about it and instead left me to the less than capable hands of doctor google to try and figure out what to expect. These situations are not right, they should not be happening!

Don't even get me started on the doctors that decide to pretend to be experts just so they can dismiss your symptoms as things that are unconnected to your disease

.

Everyone and their dog seems to know the amount of work that goes into being a doctor, everyone knows that doctors are also human (unless you're going to some futuristic robot doctor) and that there are going to be things they have no idea about. I think that knowing these things means that most people aren't going to have their brains melt down if a doctor says that they aren't sure about this specific disease so they will have to look some things up or will find an expert to send you to. Or maybe a lot of people will have a brain melt down if this happens because doctors aren't known for doing this.

Is it really that much to ask for doctors that are willing to be seen as not an expert in everything that comes to medicine?

I know there are doctors that don't do these things and they are to be treasured. My gp was like this. He only had a vague idea about vasculitis and that it was similar to lupus so you know what he did? He listened to me as to what symptoms I was experiencing and he was not afraid to talk to the other doctors I see that DO know about vasculitis. He would refer me to them if something was out of his scope, but he would do what he could to make sure I knew where about my health stood rather than sending me home to doctor google.

Oils are no Substitute for Actual Medicine

Sorry for not making a post yesterday. It was my mom's birthday and I never really got the chance to sit down and write so I will post the two memes that I ended up posting yesterday and the meme that is for today!

He was so cute I had to post two of him!

Okay, now for today's post I wanted to talk a little bit about something that actually happened to a friend of mine that has vasculitis that attacked her kidneys resulting in her needing a new one. She started a facebook page to help her achieve this goal and is using it to document her journey through dialysis and on.

Naturally, a public facebook page is going to get all sorts of people that comment on it, but one person left me floored by their response to one of her posts. They actually told her that they had some oils that would take care of her. Now, I don't know if they were just saying that the oils might help alleviate some pain or if they were actually telling her that instead of a new kidney she should just take some Frankincense.

The sad thing is, while a healthy person might that a suggestion that an oil would work as a cure for us is so silly that no one would do it, but you would be wrong about that. I know many people with chronic illnesses post about their experiences, I know I have posted about my experiences with having people tell me about the so called "miracle cures" they know of. These suggestions are so common there's a square for it on the chronic illness BINGO card.

While I understand that the people that make such suggestions are coming from a place of love and aren't trying to be terrible, the truth of the matter is, they are. When you suggest alternative treatments to a person when they aren't asking for or about them you are derailing what the person is saying about their medical treatment.

When people give me these suggestions I tend to hear one of two things. This,
                        "I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you and a doctor because I scraped my knee once and this stuff worked on it so it can obviously work for everything else out there 100% of the time."

or

                         "I am not a medical doctor, nor have I any experience in or with the medical field aside from going in sometimes when I have a cold but I know better than you or a doctor because I believe in all sorts of conspiracy theories including the idea that medical science is actually a business and they want you to have to keep paying them for services. BIGPHARMABIGPHARMABIGPHARMA!"

But at least the first one is coming from a place of love: it worked for them, or at least they thought it worked for them, so it will work for you too. I'm not sure where the other one is coming from, maybe love that took a detour on the fear bus into conspiracy theory town.

The problem is, these statements do harm. They work to try and convince people that they don't have to listen to their doctors. If you have any sort of chronic illness it can become tiresome to take all the medications and do what you need to do to stay healthy; so depending on when someone makes these sorts of suggestions to you it can be really tempting to try it. You are telling us that we should take our hope away from what has been proven to work and place it in an unverified, untested long shot. You are also essentially telling us that we don't know what we're talking about when it comes to our illness and that you, who have no experience with it and more than likely know next to nothing about it, know better than we do. Seriously. Just stop making these suggestions unless you have specifically been asked about some supplement!

The incidence with my friend, though, that lead to the creation of today's Vasculitis Awareness Meme!

Awareness Month

May is a lot of things. It's warm, school children are getting excited as the summer vacation gets closer, Mother's Day (at least in the US), The Avenger's: Age of Ultron is finally in theaters, allergies are running rampant, and of course Lupus Awareness Month.

But May is also awareness month for a less known relative of Lupus.

Do I really have to ask you all to guess? Cause the answer is going to appear in a meme picture I put together.

I'll wait while you save it..... Seriously, don't stop. Save the picture. I mean, sharing this post would work too I guess but I can't guarantee that the picture will show up big and bold. 

 I'll share other meme's I make throughout the month here and you are welcome, nay, encouraged to share them! After all, that's what an awareness month is about, isn't it? You don't even have to link back to my blog if you don't want to. You don't even have to have Vasculitis to share these memes either, it's not like there's a button somewhere that checks to see if you have it. If there were I would try to disable it even though I probably wouldn't be successful at it because I am not as internet savvy as I pretend to be.

Seriously, I would like to see these memes shared as far and wide as possible! The more people that are aware of Vasculitis the better it is for us!

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.

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!