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.

Another Piece of the Puzzle

Today was my eye doctor appointment. The eye doctor found inflammation in my left eye, something that is a sign of auto-immune arthritis. As the doctor put it, it is another piece in the puzzle of the diagnosis.

Since I haven't gotten my blood test results yet, I do not have all the pieces. Yet as I look at the puzzle I realize there are enough pieces to know what the picture will look like. I don't like what I see. I really do not have the emotional energy to write a lot today so I will write about what is next later.

Rheumatologist Appointment Conquered!

Yesterday I spent a whopping three hours at HSS. I really liked the Rheumatologist, she was on time and spent over 45 minutes with me! I never felt she was rushing, she asked me to tell her about everything from the beginning, then she did an exam.

There was no diagnosis. She sent me for blood test to look for Rheumatoid Arthritis(RA) and other auto-immune diseases. I was also sent to an opthamologist to check my eyes for signs of arthritis, and I will have to go every three months until RA is ruled out. Also I was prescribed some stronger anti-inflammatories along with medicine to protect my stomach from them. And then I was sent for a right hand x-ray because a few of my fingers started hurting last week.

For the hand x-ray I got to wait in the pediatrics waiting area, which is much more awesome than the others. First off it was colorful, filled with purples and greens, instead of the usual shades of grey and beige. Plus there are both adorable babies and adorable guys my age waiting there, big improvement over people about 50 years older than me. Also the x-ray tech was a lot better than the last one I had. So overall I like the pediatrics radiology department much more than the regular one (even though the wait was about three times longer).

After the we finished my mom and I went over to Tiffany's on 5th Ave. to meet my cousin from England and her mom. She was there to pick out wedding bands for her and her fiance, so that was fun. Plus as soon as Thanksgiving is over NYC starts gearing up for Christmas, so there were decorations all over 5th Ave.

Christmas Tree @ Tiffany's
However the whole day was rather exhausting. Thankfully I got an early dismissal from school today so now I plan on sleeping!

A Better Pain Chart

I hate when you someone asks you to rate your pain on a scale. It is a really hard task, I go back and forth between wondering if they think I am exaggerating to being afraid that if I don't give a high enough number they won't think its that bad. Also there are different types of pain. And when have the any of the faces that go with the chart on the wall ever properly reflected what anyone is feeling?

Well I have seen this chart floating around the internet a few times so I figured I would share. It still isn't perfect but it gives examples of similar pain and much more accurately describes my feelings while in different levels of pain.

A Better Pain Chart

I am Taking Back Shoes!

A year ago I only owned one pair of sneakers, they where the shape-up sneaker (you know the ones that supposedly helped you tone your muscles). Well on day 1 of PT after knee surgery I was told they were off limits, since they did not teach someone who was relearning to walk how to walk properly. Normal people might have bought new sneakers then, but I did not, I just wore converse instead.

Fast forward to my last day of PT, I was told converse were bad too, they were hurting my balance, in fact maybe I should just chuck all of my shoes and get a real pair of sneakers. Well I did that, for months I wore sneakers about six out of seven days a week. I missed my moccasins, uggs, and variety of flats. Shoes can make or break an outfit, no skirt looks good with sneakers. 

As boots came into fashion this year I tried to ignore the whole trend, even though I desperately wanted a pair, but why buy something you will never wear? When my aunt asked me what I wanted for my birthday I could not resist any longer I said boots. I decided after 10 long months I am done with sneakers.

So on Black Friday we set out to find boots (no we did not wake up early but instead waited until right before lunch when most of the crowds had died down).

The Amazing Boots
After finding the perfect pair  realize how much I love shoes. My sneakers are going in the back of my closet and may come out again on a bad day, but I am done with them. Maybe I will get inserts (maybe not), but my joints are done controlling my footwear choices.

Ten Thankful Things

Lately I have been a bit down, and I read somewhere writing down ten things you are thankful for at the end of the day can help. I don't think I could get ten new things everyday but figured I could try it once and thanksgiving week seems like the perfect time.

Here are the things I am thankful for.

1. I am thankful that I have no doctors appointments all week.

2. I have the most amazing friends in the world that always listen and make me feel better.

3. I have great teachers this year, two who will not let me leave class without smiling.

4. My parents, who get up at ungodly hours to bring me to doctors appointment and PT.

5. My PT knows exactly when to push me and when not to.

6. I am thankful to be finally making progress in my diagnosis.

7. I am thankful to FINALLY be done with euflexxa injections.

8. I am thankful to be done with college applications.

9. My youth group, which is full of people who are always there for me no matter how far away.

10. I am thankful to be going to my youth group's international convention in Boston in December.

Hope everyone has a great Thanksgiving!

Euflexxa- 3rd Time's the Charm

I am done with euflexxa injections!!

First thing I did today at HSS was go for right hip x-rays. Worst x-ray experience of my life. The x-ray tech kept trying to move my hip in ways it doesn't move, if it did move that way I would not have been there getting x-rays!

Then it was off to the OS's office where the PA came in and asked me how I felt after the last injection and I told her I had the same symptoms as after the first she decided to talk to the OS before doing the injection. He came in to the exam room and asked me more about my symptoms, and told me while he had seen plenty of local reactions to euflexxa he had never seen a systematic one in about 5,000 injections. Apparently I am special. It was decided that it was worth doing the last injection even with the side effects. 

There was a little less pain during the injection than the first two times, but the ten minutes after hurt a lot more than any of the injections, the first hour was just really painful in general. Now it is much more tolerable although still more pain than at this point after either of the other injection. Since this injection was later in the day than the others I haven't quite started feeling the side effects yet, so now I am just waiting for them to set in and in two weeks will hopefully start to feel improvement. 

The plan as it lies now is to see the rheumatologist in two weeks, and in four weeks I am getting a diagnostic injection in my right hip (just anesthetics no cortisone this time) and will have a follow up with the OS. Hoping the rheumatologist doesn't find anything, the euflexxa works (and with any luck when my left knee improve so will that hip since the hope is I will rely on it less), and the hip injection confirms surgery will help we will schedule right hip surgery.

Please, Don't Give Me Any More Advice!

"Have you been tested for Lyme? Did you send your test results to a lab here or in California? You know, 30% of all test come back negative and are really positive, but this lab in California is much more reliable, they caught mine. I will tell your mother about the lab."

"Have you seen a chiropractor yet? Maybe your back is causing the problems, a chiropractor could give you exercises to help."

One more unsolicited piece of medical advice may just push me over the edge. After spending all day with family for my birthday, I am ready to deck someone. I know they all care and are just looking out for me, but at the same time can we talk about something else please?

When someone has at least one doctor's appointment a week, chances are they really do not want to talk about anything medical related unless they bring it up. Between different doctors and PTs there are already enough opinions floating around in their heads, they do not need another one.

Unsolicited medical advice tends to fall into one of two, the 'not exactly true/ I have known that for years' category  or the 'I am pretty sure you are crazy' category or if you are really lucky it could fit in both.

Not exactly true/ I have known that for years- This encoumpasses all common knowlege advice such as "multiple joints could mean there is something systemic." Yes it does, since you realize this the doctor has also, not so shockingly, came to this conclusion. Some of these statements aren't always factual either, such as the "maybe it is a nerve problem," thanks but no thanks, pretty sure that cartilage damage on the MRI proved otherwise.

I am pretty sure you are crazy- This sums up what I will think if you suggest I participate is a healing circle or any activity of that nature. Yes I will probably agree to it, but if you perform reiki on me I will sit there than entire time trying to figure out how to get out of 'trying' it again without offending you. So if you do believe reiki or healing circles work, I am very happy they helped you, but if you suggested it to someone else, just because they are too polite to say they think you are crazy does not mean they aren't thinking it.

So next time you want to put in your two cents on someones medical mystery please consider if they really will find it helpful or want to hear it, because being constantly given advice can do more harm than good to someone's mental health.

One Year Later

On November 8th 2011 I woke up at six AM, even though I had the day off due to election day. I confused all the nurses in the pre-op area with a smile of excitement  This was it the last leg in this nightmare, I could finally see the light at the end of the tunnel. I was going to finally find out what was wrong with my L knee, and better yet get it fixed. I will be able to actually straighten it. Yes, that day I smiled as I thought I was going to get my life back.
Leaving the Hospital

One year later on the same day I am so far from the mind set I was on that day, but not in the way I would have hoped. Today I was talking to one of my teachers about my hips (as she also has a fair amount of trouble with her hips) and she commented on how well I was handling everything mentally. It took all my strength not to start laughing and crying at the same time.

I do not know where I am at emotionally at this point in time, but it feels very far from the optimistic girl excited to have knee surgery a year ago. Instead I will try anything to make the pain go away but have faith in nothing. I miss being an optimist, everything is better as a optimist.

My knee scope was a turning point. Originally I thought it was a good one, after all I improved for a while afterwards I even reached full ROM for the first time in over eight months. Now I realize it just marked the beginning of the worst. It was the first surgery, but I know it will not be the last.

Euflexxa Two out of Three Done

Yesterday I had my second euflexxa injection (supposed to be third but Hurricane Sandy screwed that up...not that I am bitter or anything). My last one is next week.

The appointment did not take long, only about five minutes. My knee was sterilized, "numbed", and then I got the injection, which hurt as much as last time but at least I wasn't blindsided by the pain this time. After the injection my knee was more painful and stiff than last time. Even today I can't stand on it while it is extended.

In other news I finished my six weeks of PT this morning, but I am sure I will be back in PT soon. And three weeks till the rheumatologist appointment.

Update- I totally forgot to write about how I am feeling now...which is not good. I feel sick again, exactly the same as after my 1st injection. Even though I was told that is was just a coincidence I got sick after the injection I am sure it is not now, but since I only have one left and last time I was only sick for about two days I am just going to stock up on tylenol. These shots better be worth it.

The Best Present!!

Is heat and electricity and internet and all that fun stuff that people tend to have trouble living without in the 21st century. Yesterday my house got power back and there was nothing better I could have woken up to then a shower in my own house!

My town was one of the slowest in CT to get power restored, 45% of people are still without power. I was at PT on both Wednesday and Friday, and they have half power. I have never seen anything like it before, some outlets work some don't, some lights work and some don't. There are a few buildings in the area like that, it is really insane.

In medical news, Tuesday I go for what was supposed to be my last injection but now is my second. I will have to reschedule my last injection then because HSS said they would call sometime during last week but we had no power or phone so it would not get through. Unless I get a new prescription for PT I only have one week left. Besides that I am counting down the days until I see the rheumatologist so I can get a better treatment plan as far as my hips are concerned.

After Sandy

PT on Monday got cancelled due to the storm and so did my knee injection that I was supposed to have today. Between this and cancelling PT last Wednesday because I was sick, it has been a full week since I have had an appointment of any type!

PT is open tomorrow so even though I have no school I have to get up an hour earlier than I would for school since it was supposed to be a before school appointment. I will reschedule my Monday appointment then, I also am waiting on a call from HSS for a new appointment for my Euflexxa injection.

I did not lose power until 10 this morning...after the storm, I am pretty sure this was the world's way of playing a cruel joke on me. Worse yet though is I have no cell service, I feel like I have been cut off from the world! I am currently posting from a Barns & Noble, so it might be awhile until the next post.

Frankenstorm is Coming!

Last week went from bad to worse, as Tuesday night I got sick, and stayed home from school sick on Wednesday (and missed PT) but went to school sick Thursday. I called the OS's office to see if it had to due with the euflexxa injection, since there was no localized reaction it was probably just a coincidence. Now I feel better and my knee is still status quo, so we will see what happens after the next injection.

I don't think I mentioned it in the last post, but the OS doesn't really want to operate on my hips at all currently, because the cortisone shot only gave about 50% relief. The final opinion won't come until after the Rheumatologist appointment, which seems like so far away.

At sometime Monday Hurricane Sandy is supposed to hit CT and collide with a cold air front coming from the north as well as another storm coming from the west and crate "Frankenstorm." I keep hoping if I ignore it it will go away. While I have my college applications done, so at least that is one less thing I need to worry about, I really don't want to miss another PT appointment or my next injection on Tuesday.

MRI Number Five and Euflexxa Injection Number One

Last night I had an MRI on my right hip. This was not one of the more pleasant MRI experience I have had but hopefully I am done with MRIs for a while. The OS told me the results today since I was already there. Basicly the everything he had thought was confirmed and I have a labral tear on the right and it is bigger than the one on the left.

Today I had the first of three Euflexxa injections in my left knee. The injection itself was a lot more painful than any of the cortisone injections I had, which took my by surprise. At least there has not been a ton of pain since the actual injection. My hip actually feels a lot worse but I think that is because my knee is not quite bending as much as before the injection, so the hip is protesting the extra slack.

On the surgery front everything is still on pause until I see a Rheumatologist. The OS did say that after seeing my right hip MRI he would be more incline to operate on my right hip than any other joint, since it is the worst structurally. I just don't think my left leg could hold up on crutches so the thought of my right hip being non weight bearing for three to four weeks without fixing the left side first scares me as it is struggling with the knee injection. No point in worrying about that now.

At this point I am really I am just really exhausted by physically and mentally. I have been getting up early or getting home late a lot lately for different appointments and I can feel the toll it is having on me. I had thought I was doing better today than yesterday, but according to my friends I was really off, so I guess I was just so out of it I didn't even realize it.

So Many Appointments!!

Next week I have 1 MRI, 1 injection, 2 PT appointments. YIKES!

This is kind of insane. Although just as I thought progress was finally being made I could not get a pediatric rheumatologist appointment until the end of November, hopefully someone will cancel so I can get their appointment.

I am kind of nervous for the Euflexxa injection after the hip injection hurt so much. I also am missing two test in school for it, so I am not happy about that. Then I have to go a week later for the next injection and again a week after that for the last one.

Off to a Rheumatologist!

Today at my OS appointment many things happened. I will break it down by joint. Also it was decided I need to see a pediatric rheumatologist, because it is not normal for a sixteen year old to have so many joint problems.

Left Knee
The MRI showed the kneecap is too high (which was known), general swelling of the joint, and cartilage thinning/damage (aka arthritis but no OS wants to diagnose a 16 year old with arthritis). The plan as of now is three injections of Euflexxa a week apart and see if that helps before investigating surgery further.

Left Hip
The MRI showed FAI (which I have already discussed) and a torn labrum. The labrum is a piece of cartilage that is in the hip (similar to a meniscus in a knee). The cortisone is working but no surgery will be discussed until after I see a rheumatologist, so just continuing the PT for now.

Right Hip
The OS thinks that my other hip has FAI as well as a labral tear, which he thinks is bigger than the tear in the left side. An MRI was ordered to confirm the diagnoses, so I will go to HSS for that on Monday. I should have the MRI results by next Wednesday, if/when they confirm I will get a cortisone injection in my right hip. 

I am feeling a bit overwhelmed right now with all this. Looks like I will be spending a lot of time at HSS in the next few weeks. 

College Visit and Other Shenanigans of a 4 Day Weekend

This weekend was a 4 day weekend for me, I had Monday off for Columbus day and Tuesday off for a teacher development day. The weekend was filled by a cycle of fun activities during which I pushed my legs followed by lying in bed because of pain. I try not to get in these cycle but I still think it is better than not doing anything at all.

Saturday I had PT in the morning which was fine, but it was that night I first got in trouble. I was at one of my best friend's little sister's Bat Mitzvah, and my friend was DJing and the kids were struggling with the Hora  This is when I stepped in to try to help them, however in the end I didn't help too much and was in a good amount of pain by the end.

Sunday I babysat for two hours and spent a lot of time on the floor and getting up. I probably would have been fine if it was not for the fact that I was still paying for my attempt at dancing the night before. It was worth it though because the kids were really cute and a lot of fun.

Monday I was still in pain. I had PT that day in the afternoon, and after explaining why I was in pain I was reprimanded for my dancing attempt. Of course after PT I had to go to Shul for Simchas Torah (which is a holiday that is celebrated by dancing with Torahs), this time I stayed away from dancing, but I can not say no to playing with a three year old who is tugging on my skirt.

Today I went on a college visit. I loved the college I saw. The only problem is it took three and a half hours to get there which meant lots of sitting and then lots of walking during the tour, both activities kill my legs. So now once again my hips and knees kill.

It has also been rainy since Saturday which never helps the situation.

Cortisone Doesn't Fix Everything

Homecoming is coming up. Last year I got the cortisone injection the Monday before the dance. I literally went from being on crutches to dancing for over two hours in a week. Yes, most of my friends dance longer than I did, but I was happy since I did not expect to dance at all.

Now a week from my senior Homecoming dance I know dancing is out of the question, even with a recent cortisone shot. Even though I have felt pretty good this week (I can sit through class without pain!), tonight I found the limit of the cortisone. I attempted to dance at my best friend's little sister's Bat Mitzvah. I was prepared for right hip pain and knee pain galore, but my left hip did not hold up as well as I would have hoped.

Even though I have had chronic pain for years and it has really affected my life for the past three years I don't think I will ever stopped getting upset when it controls my life.

1st Hip PT

Today I went to PT for my hip for the first time. It was kinda like dejavu being at PT again. At least everyone is nice and I got to catch up with my PT.

Thankfully my dad made the appointment with Joe, who rehabbed my knee last year. The evaluation was slightly more complicated than usual because he did not want to stress my knees to much. I did not have to go through that much testing since I already have the diagnoses of FAI. After the evaluation it was decided that it is my flexibility that needs to be worked on, not exactly shocking news to me. Something exciting was when he did all the impingement test that have always killed when my OS does them I was pain free, which means the cortisone is working for sure!

I was given two rules for what I can and cannot do. If it hurts my hips don't do it and if it makes my hips click don't do it. The cortisone helps with the first, but the second is near impossible. When I walk my hip clicks, so that is kinda hard to avoid. Also the whole clicking thing has really limited what PT exercises I am allowed to do. So far there is I have only done about four things. One I am not allowed to do a lot because of clicking and two I need PT equipment to do, leaving me with one stretch I can complete at home.

I asked Joe what he thought the chance of avoiding surgery was. He also said only about 15% of people get better with conservative treatment but the people who did where usually young so I have age on my side. What my chances are really depends on what other damage I have in my hip, so Joe is going to request a copy of the MRI report for me. Very excited but kind of scared to see it, and now I don't have to wait until I see the OS on the 16th.

The last thing my PT suggested is orthodics . So next appointment he is fitting me for some.

First Hip PT Session Tomorrow

I have a PT appointment scheduled! It will be weird going for my hip instead of my knee.

It is in the morning, and I really hate before school PT but at least it is something. Also my dad has no idea which PT he made it with. I really hope it is Joe, who rehabbed my knee last year post knee surgery. Right now I am slightly afraid of how my "good" hip and knees will react to PT. Before this summer the only issue I remember ever having with my hips is they would click every time I did any type of bridge exercise, guess that was life's way of foreshadowing. 

Another thing that I have started to notice is a shrinking range of motion in my hips. I have been struggling to tie my shoes and pick things up from the ground. The solution is me bending my knees more and putting more stress on them and they are not taking that nicely. So hopefully PT can help some with ROM.

I will try o post tomorrow about PT, but probably will not get to since I won't get home until 9 and then it is strait to watching the presidential debate.

1 Week Post Cortisone

Right now I am rather frustrated.

While the cortisone is helping it is not doing as much as I hoped it would. After my knee injection last year I was just about completely pain free for 4ish weeks, there was also no initial pain (even the actual injection was hardly a pinch). My hip however has still had a little pain. I am defiantly walking better with is encouraging, but also means the muscles that haven't been working up to par have to get back into shape.

The biggest difference between my knee injection and my hip injection does not have to do with the injected joint though. When I had a cortisone injection in my knee I only had one bad joint, which the injection fixed. So all the sudden I had all this physical ability I had been missing out on. This time I am still left with joints that haven't been touched, so I still can not do things like jump. The only difference now is I don't limp as often (but sometimes my knee still causes me to limp) and I can sit for a little longer.

Even with those problems my biggest issue is my parents. They are not making me a PT appointment  My mom says to talk to my dad, and he says he is working on it. There has been a whole week to work on it, I am officially pissed. I need to do six weeks of PT, and since these injection tend to work for about 4-6 weeks in my experience and I am already a week in, the cortisone will have completely worn off before I finish enough PT to have surgery. Besides for that I am also going back to the OS in two weeks, which will be pretty pointless if I haven't done any PT yet. This issue has inspired many screaming matches in my house today. Also every time I bring it up my parents tell me to ice or take an anti-inflammatory. They also said when I refused to load/unload the dishwasher until they made me a PT appointment that it was a job that doesn't involve moving a lot so it wouldn't hurt (it is actually really painful for my hip as I need to constantly bent over to get dish or put them in plus walking around to put things away). Everyone seems to be missing the point. The cortisone is controlling pain better than anything else has but I need to go to PT as cortisone is not a permanent solution and after the cortisone wears off PT will become near impossible due to pain!

Sorry for rambling, I just really needed to vent. I also know this post is probably really scattered, my thoughts tend to go all over the place when I am upset.

The 85%

15%...That is what I was told by the PA when I asked what percent of people get better with conservative treatment for Femoral Acetabular Impingement (FAI). The other 85% have surgery. I was not expecting a great statistic but was hoping for a better one. Still even though I am almost defiantly having surgery there are steps to take.

First comes the Cortisone Injection, which I have had. Thankfully even though the first two days were horrible after the injection it seem to be getting better yesterday. And this morning it was rainy, which means my knees and hips usually swell, and while my knees and right hip still swelled a bit, my injected hip didn't! I only had a little pain where the needle actually entered the joint, but besides that my hip was pretty good. The fact the injection is working means surgery will probably work as well.

Next I have to start PT, but I am supposed to go to a hip specialist preferably. It does not seem like a whole bunch of those exactly exist where I live, so it is a work in progress. The sooner I start PT the sooner I can get surgery and be done.

Soon I will probably have a CT scan done as well, since they give a more detail image of bone deformities.

Ultrasound Guided Cortisone Injection

Today was the big day. I woke up at 5AM, I firmly believe no one on the planet should ever have to be awake at this hour. It was still dark out when I embarked for HSS. The only good thing about getting up this early was how pretty the view was from the waiting room window. I have discovered both the x-ray waiting room and the ultrasound waiting room over look the east river, which is gorgeous in the morning.

View from the ultrasound waiting area at 7AM
Soon I was called back to an ultrasound room. First they just did an ultrasound of my hip, the radiologist pointed out that I have Cam impingement. I asked if I also have pincer but he said it was nearly impossible to see on an ultrasound but most people have both.He also said that my labrum was not detached, even though he could not tell if it was torn, but at least the fact it is not detached is a good sign. I was really surprised he told me so much when I have gone for MRIs and x-rays the radiologist usually say they can't tell me anything.

Next it was time for the injection. First they sterilized the area then they put a sterile field around it, and then sterilized again. first they insect some numbing stuff, although it didn't feel numb but hopefully helped, it burned a little while they injected it. Instead of injecting the cortisone in the same manner, first the needle by itself went it. The doctor was using an ultrasound to see where it was going. The needle hurt when it first went in and there was a painful pop when it enter the actual joint. Next the cortisone shot was injected, there was a sharp pain as it went in but after a few seconds all that was left was a residual soreness. 

The first few hours afterwards my hip was stiff from all the extra fluid and a little sore but not too bad. At hour three or four however I was in a lot more pain. The radiologist told me to relax for the day, but me being me I went to school anyway. I would not suggested that to others. Right now it hurts to move my leg or put any weight on it but hopefully it will get better soon.

T-Minus 2 Day Till Cortisone

A bit nervous but excited for my OS appointment/cortisone  injection. I plan on asking a bunch of questions on hip impingement. The more information I look up the better I feel about the hip situation.

It's my knees that still worry me. Best case scenario the hip injection makes my knee pain go away (well in the left knee anyway), but if not I have will be in the exact same place I was before the hip issues with my knees. Even if my hip gets fixed, if my knees don't get better will I really be that much better off?

I feel like my knees are being ignored, and the hope is that the hip impingement is causing the knee pain, but I am not convinced. I just want to be done dealing with this by the end of the year. I don't want the pain that controls my life now to go away be for college.

Here's to hoping the injection works!

Another Diagnosis...

Wednesday afternoon HSS called with the results of my MRIs. The knee MRI didn't show much of any importance but I have a high ridding patella, which was not totally new information. The hip MRI was much more interesting apparently. It showed Hip Impingement.
Hip Impingement/FAI

I was not given a ton of other information which is frustrating. I am going into the city on September 24th for a cortisone shot in my hip. I have already had one in my knee, but hip ones are a bit more annoying since they have to be ultrasound guided. After that I will be sent to physical therapy I think. I wanted to start PT now but was told I have to wait. I will hopefully get more details on the 24th.

More MRIs

Last Friday I went in to the city to see a new OS at the Hospital for Special Surgery. What came out of this appointment is it is time for new MRIs. I scheduled an MRI for both my left knee and hip for Monday.

This was my 3rd MRI on my knee and my 1st MRI on my hip, nothing of importance has ever been found through any of these, so I did not have high hopes for this one.

I got to HSS for my appointment at 6:15 and I go to the MRI room and the technician is looking at my recently filled out questionnaire. He looks up and says "you have braces?"

"Yep"

Next he asked me to stick my head next to the MRI machine to see if it pulled on my braces., as this one had a stronger magnet than most. And it did so I had to be swapped with another person. So twenty minutes later I finally started the MRI. In total I was in the MRI machine for over an hour and a half, at least I got to listen to Adele.

House OS

Hi, I am Joan and I have probably had knee pain since I was about 10 and first went to an orthopedist when I was a Freshman, well now I am 16 and I am a senior and also have hip pain. If House was an orthopedic surgeon(OS) I would probably be one of his patients. Here is my history by the numbers-

Countless X-rays and doctors appointments
8ish different diagnoses (not sure about number)
8 months with out full range of motion(ROM) in my left knee
4 Painful joints (both knees and hips, worse on left side)
4 MRIs
4 Knee braces
3 PT attempts
3 Different doctors
3 Months on crutches
1 Cortisone shot
1 Knee surgery
1 Year since I have ran

Lately I have doing a lot of research and have found people's blogs very helpful so I have decided to make one of my own to hopefully help other people (as well as vent a little).