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Showing posts from December, 2012

Week in Boston

I haven't posted in a week because I was at my youth groups international convention in Boston! It was an amazing week, and makes me sad I am a senior, so this one was my last.

My health did make being functional a bit harder and slightly less possible than when I went to last year's. Mind you last year I was just about seven weeks post op from knee surgery and had only been totally off crutches for a week. I even had to use one crutch for a day because whenever I got shoved my knee would give out.

This year while I didn't have to worry as much about my knee specifically, as since the euflexxa it is one of my better joints, I had a lot of other things to worry about. My first issue with any trip I have taken (even overnight ones) is packing, because my hips hate bending. I found the solution was to put my suitcase on my bed (such a no brainer I feel stupid for not thing of it sooner.

The bus ride was four hours of sitting, not something I can do easily, but I was able to g…

Uveitis and Lyme No More

Yesterday was full of good things! About time! First I got my braces off! And then I found out both of the Lyme test in the second set came back negative! I just need to get one last set in 8 weeks and I am in the clear for Lyme!

Not sure if I ever explained that the official name for the inflammation in my eye is uveitis, do yourself a favorite and do not google it, the results aren't good. The good news is that according to the specialist I saw for it yesterday I don't have uveitis. It either means the first eye doctor made a mistake or the NSAIDs I started taking helped, hopefully the former but either way I will take it! Also if it is the former than an auto-immune disease is less likely. The eye doctor also said that I have enough joint involvement I probably won't have a problem with uveitis again, because apparently it tends to be a problem in kids with fewer joint problems. (Never thought having so many bad joints would be a good thing)

Unfortunately the joint that…

The Essentials

RA Warrior is doing a blog carnival about non-medical things that help ease some pain or make life a little easier. I have a few golden product so I have decided to participate.


I probably could not function without my Sun Beam Heat Pad. Most nights I can not choose which joint to use it on first. When I got it last year to calm muscle spasms after knee surgery I did not know how much I would use it. There is even a pad inside that you can dampen so you can use it for moist heat. I got it from Wal-Mart and I don't think it was even $15.
This Teavana Tumbler is actually my favorite thing ever. I use it everyday for both tea and coffee. Even before I had problems with my hands I have always been a naturally clumsy person, and leaky travel mugs might hold up for most but for me they have always been a recipe for disaster. Now throw in a pair of crutches to that equation, as I had to for three months last year, and I needed help to carry the travel mugs, because in my bag they would l…

Life Story in Meme Form

I need a letter from a specialist signing off on a gap year program I am applying to due to the knee surgery I had last year one says to go to the other.
Why is hip surgery being delayed? OS wants Rheumy's OK, please just talk already!

Perspective

"Do you know the music teacher at Cider Mill?" my dad ask me on Sunday night. (Cider Mill is the 3rd-5th grade elementary school I work at)

"I don't think so, why? Whats their name?" I shout up the stairs, but my dad insists I come up.

Finally he tells me why he wants to know, "Mrs. B, she was shot by her husband"

Wow, Monday came even though I wasn't working that day I still felt terrible thinking about all my sweet kids going back to school no longer having a music teacher. How do you tell 3rd graders their music teacher is never coming back?

Today I when heard that there was a shooting in Newtown I was in a computer lab at school and quickly googled it, ready to hear about a high school shooting. I was in shock to hear the shooting took place in a kindergarten class room and most victims were under the age of 10. I kept looking at different news source hoping one would say it was not as bad as it seemed, but by an hour later the casualties went…

Time Wasted

Today I missed the majority of my classes so I could go to a rheumatologist appointment. I had been building up to it in my head, told myself that I would at least find out about the Lyme if nothing else, and I should freak out until after it. Well the whole thing was a waste of my time.

The second set of blood test haven't come back yet, so I got absolutely no information. And the rheumatologist wants to talk to the OS before doing anything else. Great so we accomplished they both want to talk to the other before doing anything, why couldn't that happen before I went to NYC twice this week?

My next rheumatologist appointment in not for another six weeks, apparently I am the only one feeling a sense of urgency in getting to the bottom of this. With every doctor's appointment I feel less confident about the situation getting resolved or at least figured out before the end of the year.

To top it off, in order to go on the gap year program I was planning on going on I need a …

Ultrasound Guided Diagnostic Injection

Ultrasound guided injection take two! Left hip this time, and minus the cortisone this time. In case you are wondering why I decided not to get cortisone there were a few factors. In the end there was just way more con than pro.

Pro(based on left hip outcome)
A week of 75% relief
A few weeks of 50% relief

Con(based on left hip outcome)
Can make cartilage deteriorate (especially considering I am only 17)
2 Days of a ton of pain
1 Day of crutches at school

The procedure itself was pretty similar to the last one but better, I even had the same radiologist. He was really nice both times. And he kind of made a joke about all the explanation because we both knew the deal. Little things like that just make a procedure that much easier to deal with(only if you have already had it done otherwise the explanation stuff is REALLY important), I swear I have had x-ray/MRI techs who know less than I do about what to expect.

On the pain side of things, I noticed the initial lidocaine shot burned more t…

Lyme and ...?

Yesterday the Rheumatologist called my mom. My blood-work showed no markers for RA, but it did have signs of Lyme Disease. The problem is Lyme doesn't fit with most of my symptoms. So the current theory is I have Lyme and something else. I feel like I am back in the middle of a house episode, maybe I changed the name of this blog prematurely.

Looks like I am going to be sent for more blood test to further investigate Lyme, and who knows what else. Of course I can not get these done until after I get a script for them at my Rheumy appointment on Thursday, and since I need to have a blood test to check my liver function since I will be reaching the two week mark on the prescription anti-inflammatories before the appointment, it looks as if I get to have my blood taken twice this week. How did I get so lucky.

I feel like the test results have created more questions then they answered...frustrating. I would really like to curl up in a ball under my covers and hid from the world right …

Limbo:(

What real is driving my crazy right now is this limbo I am in. While I almost defiantly have RA or some form of auto-immune arthritis it has been officially diagnosed yet, and is still probably a week away from being diagnosed. As someone who has (or had pre auto-immune disease) the next six years of her life carefully planned out, and a rough outline for the rest of it I am having the most issues with the uncertainty.

I will probably be looking at medical treatments on a daily basis for the rest of my life, I have no idea what type or haw it will affect my life. Re-planning my life seems like giving up, but if I act like nothing is going to have to change is that denial? I feel like I am walking a fine line here, and a dotted one at that.

On one hand I feel like it is silly to freak out about something that is not even official yet on the other hand if I ignore it that would be like I am in denial. Neither option is currently helping me, nor is Google.

Its just scary to think how muc…

Safe from Denial

I think I finally have the emotional strength to write a longer post today. The past few days have been an emotional roller-coaster.

Before I went to the Rheumy I had googled what to expect from the appointment and been led to lots of stuff on RA, so I knew a bit about it and was sure I did not have it. I blew the pain in my shoulder off as sleeping on it wrong, and I had probably just injured my fingers and not realized it.

Going into the eye doctor appointment on Friday I was not worried, because I was sure I was fine, and even most people with auto-immune arthritis do not even have eye inflammation. There was really no reason to worry myself. As soon as the doctor saw me he asked if I had JRA, I said it was a possibility, and the exam was just a precaution. Sitting there my bubble was burst, inflammation was found in my left eye, I had some form of auto-immune arthritis.

By the time I got home from school Friday the eye doctor had already faxed my Rheumy his findings, and my Rheumy…

New Name, New Game

You may have noticed I changed the blogs name from "House OS" to "Living Life with a Flare." It seems as if the mystery has been solved. I have all but officially been diagnosed with Juvenile Rheumatoid Arthritis. Instead of the game being to figure out what is wrong it will now be to figure out how to control this disease.

From here on out is going to be a long hard journey, but I can do. I have no appointments this week but the following week I have OS then Rheumy, and the week after that I see an eye doctor who specializes in auto-Immunol diseases.