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 get my own seat so I could move around and not get stiff. I also used heat on all my joints after the bus ride (actually almost every night I used heat), my heat pad was my savior. I also brought two ice things, one gel ice pack that I can strap and velcro to any joint, but could only use half the time since I only had a freezer for part of the trip. I also brought one of those blue ice bags, like the ones you see on TV shows or in cartoons. I am not usually a big fan of this but it was a life savior during the trip as it did not require the fore thought of putting into a freezer.

Medication was also annoying since I was not always able to go back to my room to get it before meals, and breakfast tended to be a couple hours after waking up. My conclusion was I need a pill box(I feel like an old woman just typing it). Any ideas on where I can get one that doesn't look AARP issued? I also started eating snacks after I got up to take my medicine with.

The biggest issue was the weather. I only had two really bad days, one was when it was pouring and the other was when it was snowing. All I could do was take Tylenol to take the edge off for a few hours, however it only provided slight relieve and would not last until I could take another dose. If I had been home on either of these days I would probably have spent mos of the day in bed, but it was not an option.

Overall I had an amazing time and try not to let my joints get in the way of my life.

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 makes our thumbs opposable has been killing me today and I can't type anymore,. Since I will be away for the next week I won't be able to post until next Thursday at the earliest.

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 leak. So when the prospect of hip surgery and more time on crutches came up I knew the I needed a better solution. My sister got this for me for my birthday and it has been great. It doesn't spill ever, it also keeps my tea/coffee hot for insane amounts of time. I am confident when (or if) I have hip surgery I can throw this in my bag with out fears of leaks.

I also use an assortment of heat/ice packs and icy-hot products (my favorites being the sleeves and the roll-on one, I really have no desire to apply it using my hands so I never get the gel) and other things.

Disclaimer: I received no financial compensation or free products for any of the above reviews. 


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 from 3 injured to at least 27 dead.

I did have to go to work today, at a school just under a half hour from where the shooting happened. I need to tell the kids they couldn't use any electronics even though it was Friday, since it was decided to let there parents tell them.

I am still numb from the day, but it really things in to perspective.

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 letter from a specialist because I had knee surgery. So on Tuesday I ask my OS who said he wouldn't sign off unless my Rheumy did, but she says since she hasn't diagnosed anything yet I don't need her sign off. Mean while if I don't get either of them I can't go.


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 than last time, but it was really the worse part this time around, so I'll take it. I barely felt the BIG needle going in even when it entered the joint it wasn't that painful. The actual injection was less painful too, but I think that has to do with having just aesthetics injected and not cortisone as well, meaning less fluid in the joint. Also I could walk perfectly fine afterwards and had no pain immediately (and it had been a bad day for my right hip in the morning). So much better than my left hip injection experience!

Next it was off to the OS so he could test my pain. There was none when he tested! He said this was when he would usually talk about scheduling surgery but since there were clearly some systematic issues he wanted to see what my rheumatologist thought, so he sent her an e-mail. I also made an appointment for bilateral hip CT scan, since those are needed before surgery, so as soon as I get the go from the rheumy I will be prepared.

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 about now...oh wait my hips wouldn't let me do that.

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 much my life has changed from two weeks ago. I always said to myself "at least it is only orthopedic issues you have, those are fixable" but now it's not just orthopedic, it's not "fixable."

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 had already called my parents and gave them the name of a new eye specialist, and I had an appointment scheduled with the new eye specialist. Yet I still told myself the doctor had said the inflammation was only low grade. As I looked up more RA stories, it seemed everyone was really sick at the time of there diagnosis. I just did not seen to fit this description, with mainly four large joints affected.

As if my body had to prove a point to me that it really is sick, this weekend has been miserable. I have had terrible pain in my left shoulder/neck area , more fingers bad than good, and my hips and knees killed as usual. Not helping the situation I was at a leadership training overnight for my youth group on Saturday night, and we got a grand total of 2.5 hours of sleep (which were on a hard wood floor).

Today I could barely lift my left arm due to my shoulder and I am close to tears from the pain in my hips. I seem to be able to keep my fingers/hands in check as long as I take my meds on time. This is my body's way of keeping me from going in to denial. I guess my story is similar to the other.

Luckily I do not have any doctor appointments this week so I have a little time to finish processing the information before getting anymore. Although I would really like to know what the next steps are for me because it seems like there are so many possibility, and speculation/curiosity+ Google =freak out.

Google and I currently have a love hate relationship.

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.