Life with a Flare

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.

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 applicatio...

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 wor...

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.

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 ...

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...

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.

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...

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 ho...

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...