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.

A Summary of Sorts

If you're reading my blog you're probably aware that what I have is a disease where my immune system has mistaken my blood vessels as foreign invaders in my body. You probably also know that it sucks.

Vasculitis is a group of diseases that all involve the immune system doing this. In some cases the immune system tends to decide that it has a favorite type of blood vessel that it likes to attack. Sometimes these are the large arteries and in other diseases the immune system decides to go for the smallest capillaries. The type that I have sits right in the middle and goes for everything from the capillaries up to the small arteries. So, it won't go for things like my aorta, but it will go for the artery that attaches to my kidneys. It will also go for all the smaller vessels down to the capillaries.

I was never really given a specific diagnosis; they know it's vasculitis, and they know it's one of the three that are ANCA associated, but because I didn't have a biopsy they can't get anymore specific than that. .My doctors and I have decided to lean more towards Granulomatosis with Polyangiitis because that's more in line with the symptoms I've shown, but the ANCA I show is the one that leans more towards Microscopic Polyangiitis.

Hey, in one post you've now pretty much caught up the main summary of my blog! Congratulations!

Nose Cameras

The other day I tried to make an appointment with my old ENT, the one that I've been seeing since before vasculitis was even on the radar and I was a more innocent creature, only to be informed that they no longer accept my insurance. I hadn't even gotten a note from them! Because I am a nerdy character in a movie made sometime in the 40's or 50's my response to this was to say "Well that's a fine how do you do!"

Thankfully, I did not say this out loud in the phone and instead asked if their office could recommend someone else to me so that I could be seen.

This led me to a new ENT and my first experience with the nose/throat camera thingy that's old hat to every other person with WG but was a wholly new experience for me.

In keeping with my old timey movie character, my old ENT tended to do things the old fashioned way. Like making me hold a tiny, lit light bulb in my mouth with the lights off. No, it wasn't something weird, it was to see my sinuses!

Anyway, this new ENT was training someone the day that I came in so she sat in while he shoved a little, flexible, and remote controlled camera up my nose.

Let me tell you, I've never had the experience of being embarrassed of what the inside of my body looks like but seeing my nasty looking, crusty inside of my nose on a tv in high definition while other people looked on certainly caused that.

It was a weird feeling, having the camera in my nose pushed back far enough that it had come out the back so we could see the inside of my trachea.

I wasn't nearly as embarrassed by my trachea. It wasn't as gross, just some swelling and irritation.

After the camera experience the doctor said he wanted me to have a CT of my sinuses as I hadn't had one of those in a while. While a CT wasn't in my plans for the day, I went down to the clinic basement and got it done. At least they were showing Pirates of the Caribbean while I was in the waiting room.

The appointment took over two hours and just about the time I was beginning to think that I was going to have to accept the fact that the clinic was my new home I was informed me that I have swelling in my trachea around my vocal chords and a sinus infection and sent home with a prescription. 

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!

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.

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!

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.

https://www.medgift.com/JjJordansSupportPage

Throw Back Thursday?

I know I've been really sporadic with updating this blog as of late and I really would like to start up again.

This is a TBT post, I guess. Back when I first got put on Rituxan in December of 2012 (and subsequently had a pulmonary embolism on Christmas and spent that day, and my last infusion day, in the hospital....) I decided to write a bunch of "Chemo Carols" to occupy the long hours spent in the infusion chair.

It was a long, boring, and more than a little drugged experience. I thought that posting them here on my dusty blog for a TBT would be appropriate since I am getting scheduled for it again after the first of the year.


In the first hour of rituxan my oncology nurse gave to me, a full bag on the IV tree.
In the second hour of rituxan my oncology nurse gave to me, two vitals checks.
In the third hour of rituxan my oncology nurse gave to me, three pillows for my back.
In the fourth hour of rituxan my oncology nurse gave to me, four sterile pads.
In the fifth hour of rituxan my oncology nurse gave to me, five medicines.
In the sixth hour of rituxan my oncology nurse brought to me, six new chemo patients.
In the seventh hour of rituxan my oncology nurse gave to me, seven machines beeping.
In the eighth hour of rituxan my oncology nurse gave to me, eight bruises forming.
In the ninth hour of rituxan my oncology nurse gave to me, nine disinfectant wipes.
In the tenth hour of rituxan my HMO told to me, I’ve got to pay a ten thousand dollar fee.
In the eleventh hour of rituxan the song has gotten long, eleven times I’ve wished that I was home.
In the twelfth hour of rituxan I’m finally going home, for another week I get a reprieve!

Rituxan infusion number 2

More chemo carols brought to you by Rituxan and Benadryl :)
Oh the room is so cold and sterile, but the rituxan in the bag does babble ,
And since the IV’s got hours to go, let it flow, let it flow, let it flow.
I don’t show signs of reacting, my lungs are not hacking,
And since the IV’s got hours to go, let it flow, let it flow, let it flow.
When I finally get to leave, how I’ll skip down the hall to the door,
But the rituxan will help me heal, so my health won’t be so poor.
The IV is slowly stopping, and my vein has started popping,
But as long as we take it slow, the Rituxan flows, the rituxan flows, the rituxan flows.


I posted these on my tumblr account when I first wrote them, so if you've seen them there that's because it was me that did it.

Now you know!

I hope you are all having a pleasant season! I've got some exciting news that's coming after the first of the year so stay tuned!