Category Archives: Jaw Pain

A Week in Colorado

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The past week I’ve been in Colorado. I was there for a week running a National GRTS Users conference out of the EPA Region 8 building (which is gorgeous by the way) and then Andrew flew in and we got to spend Saturday-Tuesday morning with his brother, Austin, and Austin’s wife, Mariah. I really like Colorado. It’s so much fun! And a lot of things happened that I need to update on. First off, there was the immense amount of jaw pain that I reported on. There was also the issue of the random red splotches, bumps, and hard spots that were occurring at my injection sites, each time looking worse. So, I finally decided to call the Rheumy on Saturday and leave a voicemail on the emergency line- because I was positive I was having an allergic reaction- big red, hot, painful bullseye splotches- like the one at right. So I called the emergency line and got a hold of a woman. I started to talk about how I had only been on Enbrel for three weeks and she cut me off. She asked me for the name of my doctor. I told her and she said back are you calling the right place? There’s no doctor on my list with that name. I repeated it and spelled the name and said I had been coming for a month. She replied with well we can’t help you if he’s not on the list. Then she read through the list of doctors (all doctors at the same location) and I repeated yes, my doctor is newer perhaps he’s not on your list, she yelled back well we can’t help you if he’s not here, you must have the wrong place. Then she hung up. I would like to pause here and reflect if I may.

It is already hard enough to feel like you call your doctor ALL the time to complain about some new awful source of pain or ask or double check to see if something is normal. It is equally hard to gain the courage to call and try to explain the amount of pain that you are in thinking all the while that your doctor doesn’t necessarily believe you. After all, auto-immune diseases are weird. There’s no flashy broken bone or torn ligaments (well sometimes there are but not always). Add on top, a woman who is downright horrible. It was a bad experience. I let it go until Monday and then called back to talk to my doctor. Long story short, he said he doesn’t want to give up on the Enbrel yet and that I should try topical Benadryl. So I added that to my repitoir, along with a prescription for Flexeral (not happy about this one) for when TMJ acts up.  I also moved up my next appointment. So that’s that.

In other news, Denver and Boulder were a ton of fun! I love the mountains, the people, the food, the views, the beers. Just awesome. I didn’t get as much of a vacation as I had hoped for (too much grad school stuff to work on) but I did get to sleep in one morning and do some fun things and best of all, hang out with a lot of great people. Here are some of the things we did…

On Friday night before Andrew arrived, I went with Austin and Mariah to a Halloween Party!
My costume was: Everything but the kitchen sink

And it SNOWED during my GRTS Conference— and we had an early dismissal!!

And we went for a nice walk around  Coot Lake where their dog, River, swam!

We went to a playoff game for the Colorado Rapids!

And of course, we went to a brewery. This one’s the Tasty Weasel Tasting Room at Oskar Blues

As you can see, we did a bunch of fun things!!! We also tried out a local breakfast burrito shop, I ate sushi (! don’t worry just veggie sushi), and a couple other hot spots. We played in a toy store on Pearl Street and Andrew and I dressed up as Scooby Doo and Scrappy Doo. We had a great time and I wish we were still there!!!!

Did Someone Wire My Jaw Shut?

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Today was the last day of the 2011 Annual GRTS Users Conference and I couldn’t be happier. Not that it didn’t go well and not that I don’t love all the folks who came out from all over the country, but because I don’t think I could handle one more day or even 4 more hours. This week has been very trying. I’ve a Mid Term, the conference to put on, a 4 hour presentation to give one morning, overseeing other presentations, listening to folks voice their opinions (sometimes VERY strongly) about the issues that the database has or the way the government works… and socializing. Now it’s Friday, I have gotten very little sleep and my mind won’t stop racing. I’ve got so much to do between work and school. I was really looking forward to spending the next 4 days not caring and not thinking about all this stuff, because I’ll be in Boulder with Andrew and his brother, Austin, and Austin’s wife, Mariah. But, looks like I’ll be finishing up work instead :0(.

The worst part is on top of all the work that has to be done and the talking and conference-going that would tire out anyone, there’s the AS. I’m getting really frustrated. I know I have to wait for medications to work and it takes at least a month sometimes to see if something is working and having an auto-immune disease is like being a lab rat. But what gives? Everyday I feel like there is a new symptom or issue and it’s frustrating. The last few days I’ve had those rando- red circles appear. Fine, whatever. They itch sometimes, they’re sore sometimes. No biggie. But my jaw and my head? I NEED them to be ok! I’m sure my head is linked to the jaw but my jaw literally feels like someone wired it shut (by the way, never google image search for a wired jaw it’s gross).

This afternoon we went out to lunch and i couldn’t even eat my burger. It wasn’t huge, it was small. I tried to bite it, it hurt so bad, tears formed. I had to eat it with a fork and knife. I’ve only been experiencing the jaw pain since Enbrel started. I’ve never had it before. Now the question becomes is it because of the Enbrel or the AS? Or something completely different? It is a symptom of AS it’s just I’ve never felt it before. I guess it’s time to call my Rheumy.

Regardless, I am confident that we will find a treatment that works well and gets me back to normal (whatever that is)! I will be patient and in the meantime, continue blogging about the weird things that I feel and discover.