Monday, June 29, 2015

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.

Tuesday, June 23, 2015

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.

Thursday, June 18, 2015

Surgery Over

So I had my sinuses roto rootered yesterday. Hopefully this will lead to better breathing in the future. It was kind of funny because the surgeon was running ahead of schedule, how often does that happen (?), so he was trying to rush the nurses through putting the IV's and stuff in and he finally just got fed up and came to collect me and take me down to surgery himself because he couldn't stand to wait for the orderlies to do it. The whole trip to the surgical suite other nurses would give him a hard time since he used to be an orderly at that hospital before he became a surgeon.

I had some trouble coming out of the anesthesia, my oxygen wouldn't stay up and my blood pressure kept jogging around. But I am well on the way to mending and will hopefully be able to smell and taste things again! At the very least it will be nice to not have a constant sinus infection.

Have fun all you vascies attending the conference in Florida! I hope you all have a wonderful time and learn lots!

Saturday, June 13, 2015

Vasculitis Aesthetic

When you don't have to do smokey eye make-up because the dark circles around them have got that covered for you.

Your clothes become less of a fashion statement than a comfort statement.

You try to see if the phlebotomists have tape that at least sort of matches your outfit.

You have perfected the hospital bed selfie.

That lost look you have on your face when you've forgotten what it is that you were doing for the third time in a row.

Tired. Tired can be an aesthetic. You are unintentionally mimicking that super hot, just rolled out of bed and don't care look that's so popular with college students.... or maybe it's just that those college students are just as tired as you are.


This was just shared to me and I think everyone with vasculitis should see and read it. What we have is chronic. It will never go away. We have the right to be frustrated, stressed, worried, and to have our voices heard. We may bottle these emotions up, or we may end up taking them out on the nearest available target. But we are only human. I know many of us feel like we are just spinning our wheels when it comes to life after diagnosis, but it's not true. Every step you take when it comes to your disease, every doctor you visit, every specialist you educate paves the way and makes it easier for those who come behind you.

It's a hard, unfair, road to have to take, but you  are taking it and you are doing a good job! So keep going!

Tuesday, June 9, 2015

Nobody Nose

One week from tomorrow I will be undergoing more sinus surgery. I'm a little disappointed that I have yet to see any super powers develop from the 3 CT scans I had last month.

I was hoping to at least be able to glow in the dark or something. Those comics have really mislead me on where super powers come from....

Anyway, the scans showed what I suspected. My sinuses are way messed up. One of them above my eye is completely full of tissue that they're going to have to go in and scrape out. On the plus side, this will hopefully solve some of the breathing issues I've been having.

I hope it's not a hard surgery, I know that my last one was pretty simple in terms of recovery time. Of course, that was back before I had been diagnosed so we'll see.

This is one that I made for awareness month that I didn't put out.
I'm going to keep on raising awareness in my own way and keep on helping out with my local chapter. When I see the memes I've made shared around it makes me happy! That's just what I wanted them to do; go out and spread so that other vascies can get a laugh and share something that will maybe get others to think about Vasculitis!