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.

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!

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!

Life, Lemons and the Making of Lemonade

I started back to work yesterday. Excited to be headed to a new school, working with a new teacher, seeing new faces (except that mood swings made me all nostalgic for last year and missing my kids :( ). I figured, I'd had the whole summer off, I was ready and willing to be back at work. Sometimes, though, the mind is willing when the body is not. I got home so exhausted I could barely stand up and was (am) still suffering some ill effects.

I am hoping that this is not a vision of the future to how the rest of the school year is going to be. Granted, I did have to start on a new chemo therapy regimen. I already wasn't tolerating the Imuran really well, but with my recent headaches, my jaw freezing up, ankles/knees/legs/feet swelling up, and a recent onset of eye/ear/and nose issues (possibly relating to the MRSA) it was decided that I should INCREASE my dosage from 150mg per day to 200. This is uncommon, from what I understand 150mg is about as high as they like to go. We discussed other chemo options, I think I will flat out refuse Cellcept if it is offered, but my rheumy did broach the subject of Rituxin which has been shown to work well for ANCA associated vasculitis. It is only available through IV, though, can be expensive and has a side effect (uncommon I have been assured) that does something to the brain.

Now, when I said I haven't been tolerating the Imuran that well I mean that it made me really sick. The methotrexate also made me sick, but I find myself skipping doses of my Imuran just to give my stomach a break. I was then given another pill to help ease my stomach, but I do have to go in for an ultrasound as they are worried that I now might need my gallbladder removed. UGH.

I hate going to the doctor and having them add more pills. I wanted to reduce pills again. I don't even get to reduce my Prednisone, unfortunately AND I had to have a blood pressure medication added in. I am up to 8 pills a day. 8! That's without taking any antibiotics or pain medications. I feel like I should rattle when I walk!

The blood pressure meds are the most upsetting though. I have never had high blood pressure in my life, just the opposite. Once I started showing symptoms of the Wegener's (I spelled it right that time!) my bp has been creeping up. Finally, it got to the point where I had to start taking something for it. This makes me feel like I have failed in some way. That I wasn't able to make enough life style changes to help me keep it in control. I worry that people are going to judge me on it. I have gained weight from my meds, and the Pred itself, also contribute to it. It's frustrating. Life sucks right now.

So I'm trying to take my lemons and make them into lemonade (no fancy alcoholic drinks for me, rats) and do the best I can to fight my disease. It may seem like I'm trying to really plug this thing, but if you are in or know someone who is in the Salt Lake City area please let them know about my fundraiser http://www.facebook.com/event.php?eid=182740895131841 It will run Saturday and Sunday, Sept 17th and 18th (if you don't have a fb, send me a message and I can get you more information). Just having people come helps spread awareness which does wonders to help research into causes and hopefully cures. I don't want to spend the rest of my life rattling like a pill bottle when I walk. Please. Think of how my ninja training has suffered.