Life with a Flare

As I previously state PT has been a struggle. It's been almost 2 months since I started and I haven't gotten very but at my PT pointed out today was only my 5 visit and at least 2 of them where washes due to other health issues. I did have to call my Rheumy's office since I was supposed to call a month in...oops. She decided I need to have joint ultrasounds, which I got done today. If they don't show anything I am being sent to MRI, but I am not sure for which joints because having 4 MRIs doesn't sound right. Either way I do not want MRIs, my joints have been through a lot so there is a good chance they might show something but will it show the actual source of the issues? Definitely going to be pushing spending more time in PT. Today in PT I was informed that my left glute is not firing. I shouldn't be surprised, this happened to my quad after my knee surgery, but that was only 2 weeks later, not almost 2 years. So basically most of my current joint problem

Dear Senior Year Gym Teacher, We only met briefly on the first day of the semester, then for the next third of it the seniors went to health class during the gym period. Our next encounter was at a meeting with my parents and all my other teachers as well as an administrator about my upcoming absences due to a hip surgery. You were annoyed to be there clearly. Well I was annoyed to be missing part of my senior year due to surgery but if your attitude stopped there I would have been okay. After the seniors came back from health you asked anyone who had a doctor's note to come speak to you. I was very proud to walk over without the assistance of crutches for the first time in five weeks, a whole week sooner than predicted. The nurse had already emailed you informing you of my inability to participate in class. You asked me if I exercised outside of class, apparently you were unimpressed with my new found ability to walk. "Yes," I responded with a smile, "I go to ph

Two blog post in one week, what is this craziness? I thought since my joints are why I started this blog I should give an update. It's funny how this past month I have been sicker than I have ever been. I even spent a week in the hospital and added the possibility of a new diagnosis. I can not tell you the last time I ran but I am pretty sure it was the week I got home from school, like two months ago. I had actually been running about tree times a week for a while (thats something I certainly never thought I would say). Between not getting even half my caloric needs and increasing dizzy spells I am pretty sure running and any form of cardio would only lead to me fainting. I am getting side track but I will circle back around I promise! So where I last left off I believe was off Sulfasalazine to see if that would help my stomach, but it didn't. I was off is for about a month. Shortly after starting it again my joints flared (including my neck to add in a new one). I called

I feel like I haven't written in ages, I have had so much going on. First I was on vacation in Maine then I had welcome week at school and the first week of classes. This is just going to be pictures, but I have a lot to write about in my next post if I ever get the time! Lil Sis Surveying the Ocean Loving my new LL Bean Moccassins My idiot sisters were the only one in the water at night without a wetsuit on! So I may have made my sister get up at 5am to see the sunrise! Carousel Sister Selfies Learned How to Use KT Tape Temple Time! Target Take Over! South Street in Philly! Ziplining In the Middle of a City So Blogger is getting mad at me for adding too many pictures so I am just going to put one more as a sneak peek to my next post (if I ever get the time to write it).

Actually I missed both milestones, yesterday I was 6 weeks post op on my left hip and the day before was the 6 month mark for my right. Scars! L vs. R! I decided to look back at the post I wrote the day my right hip was 6 weeks post op, and that post was not focused on my hip. I was in pain at that point, a lot of it, and not hip pain. I was in a flare that day my knees and shoulders were not happy. Here I am 6 month later, having had two major hip surgeries in the recent past, and once again I am in a lot of pain, and once again it is not hip pain. My knees, well mostly my left knee, have been killing me. Once again I feel like I am having trouble pushing my hip because of my knee, its like a never ending cycle of pain and horribleness. On Friday I see my OS, Rheumy, and PT so I am hoping for some answers on my knee. However I doubt I will get them straight out so I think I am going to ask my OS for a cortisone injection for my left knee, because this has gone on for long enou

My PT thinks I am making progress with the external rotation, although I am still not convinced. Overall he still thinks my hip is tight so thats not good. I was really hoping to be able to just do my PT exercise on my own at school and not have to find a new PT right away or pay for it since my insurance is no longer covering my PT, but looks like I still need manual therapy. Plus my left knee has been acting up a lot, like wake me up in the middle of the night type bad, so I will eventually have to deal with that which will probably mean more PT. Current ER Next Friday in my last appointment with my PT since I am going away the following week and then I go to school. In general next Friday is going to be a long day, I also have an OS appointment followed by a rheumy appointment, so I will have to drive to the city and go to those appointments then come home and go to PT. On the bright side it means my mom can't drag me anywhere after the appointments at HSS, but I will be e

This past week has been really rough, although my hip is doing really well. Last Tuesday I had my 2 week post op appointment. It went pretty well, everything looks good. The biopsy of the inflammation came back negative for RA. The OS mentioned I toe in when I walk, something which my PT has been telling me for 2 years. Still had to stay at 50% weight bearing for another week (which is disappointing because I thought since I started out with more weight on the leg then last time around I would get to wean sooner not later). I also got a letter to send to my insurance company to try to get them to cover more PT. Wednesday I woke up extremely tired. I took a shower and then went right back to sleep, I even fell asleep in the CPM, which I have tried to do before but never been successful unless I was still on narcotics. I woke up just in time for my weekly PT session, where I noticed my right shoulder hurt and my left ankle did as well. Thursday I went to college orientation, I had

Yesterday was the first night of Passover and there was about 35 people at my house for a Seder, since I live in a split level house, our living room (where we ate) and our kitchen are half a flight of stairs apart. Bringing food and plates and what ever else up and down said stairs really took a toll on my already flaring joints. Happy Passover! Since I wrote on Thursday the flare got worse on Friday and Saturday but started to get better Sunday. Well the whole Passover thing threw that away. Now my shoulders are deadish, my knees are just slightly better.  Also Friday was like the first time since about 1 week post op I had any pain in my right hip, which is pretty good I guess. I think it was just trigger by my hips trying to make up for my knees. Also my knees are completely holding me back from getting farther in hip surgery recovery which is really frustrating. Today I got up really early to go see the eye specialist to check for uveitis, and for some reason I had

Because I am me, I could not go a full 2 weeks without a doctor's appointment. Over the weekend I started to get a cold, the worst of it was Monday night. Tuesday I was feeling pretty lethargic and my knees were really killing me so I just went to PT in the morning but not school. Today I decided I really needed to go to school ignoring the fact I could barely walk, well I made it 45 minutes before I went home sick. I went to see my primary care doctor. He just suggested I go on Relafen for a few days. My OS wants me to go back on an NSAID as well, but did not clarify which one. He is also sending me a script for PT for my knees. I ave no faith in PT to help my knees at this point...at all. It is not that I am not willing to try PT, it is just I have done so much PT for my knee and not seen a ton of improvement. I want to talk to my rheumy, but yesterday she wasn't there, so I only got to talk to the covering one, and today the phones were down or something because they

Today marks week six, and besides for the scars and PT my life is pretty much back to normal, just with one less painful joint, which is great. My knees have been really bad for the past few days so it has been hard to use the exercise. Plus I started gym class, and I can't participate so I get to walk laps around the gym by myself. Tomorrow it is supposed to snow, so I think that is making my flare worse, killing my knees even more so. I spent one of my free periods today lying in the nurses office with ice packs on my knees and shoulders. On top of everything else I have a terrible cold. I think I am going to stay home from school tomorrow, although I still have a 6:45am PT appointment that I need to go to and I will have to go in during my free period since I need to plant seeds for my AP Bio research project.

My life is almost normal. I am done with crutches (for now but I will take that)! My PT is very happy with my flexibility and ROM. I can not believe I am walking on the same hip I was 6 weeks ago, it really is amazing. I also get to go back to work this week! I am so excited, I love my job so much and I have really missed it! Although since I am me one joint could not do this well without another one having a complete fit. Actually a few having fits. My knees are out to get me, they are! My right one swells anytime I use a exercise bike and well my left knee was the joint that started this whole mess. My OS was hoping that the knee pain was mostly referred pain and would be fixed when I had hip surgery. I am here to say that as my right hip is pain free my right knee is doing the worst it has ever done! At least my shoulders seem a bit happier than they did when I was on crutches, although that is not a high bar. Putting my hair in a pony tail still takes more skill than it should.

On Monday I hit the 4 week mark, so that makes now 4.5 weeks. My hip still feels really great. Its amazing to think a few weeks ago my hip constantly hurt and now I forget I had surgery on a regular basis. I can not wait to no longer have pain in my other hip too. On Tuesday I got the ok from my PT to walk without any crutches at home, but not school which was disappointing. I had another appointment yesterday and asked again and was given a lecture about how I just had a major hip surgery and need to slow down. I was told if I argued again he would e-mail my mom, so that was the end of that and I am stuck with one crutch for a bit longer. I also got an exercise bike as my OS suggested at my last appointment. Today I spent 15 minutes on it, which is 5 more than I usually spend on the bike at PT, and my right knee blew up, which is always lovely. The irony of it is the reason my OS suggested the bike was because my knee was swelling when I used the CPM machine. I think the trut

That is the question I am currently grappling with. (No I have not forgotten that I am 4 weeks post op but since I won't have an exciting update on that until tomorrow I decided not to bore you) Today I had a rheumatologist appointment. It was pretty routine. My left elbow hurt during the exam and that was not expected but has never hurt before or after so I am going to try not to worry about that. She commented on how much better my ROM was in my operated hip then my un-operated one. My last set of Lyme tests came back negative, so we have finally ruled out Lyme after the one false positive. Since my most problematic of my joints currently are my shoulders and my knees, which could just be acting up from the hip surgery as well the crutches, she wanted to wait to re-evaluate when I have been off crutches for a little while to see if they calm down. On to the Relafen thing. I told her about the fun side affects I had from Naproxen and she said I could go back on Relafen if

I am down to one crutch! There is such a greater level of independence with one crutch then two, like I can hold my coffee/tea by my self. The simple joy of carrying your own cup! My PT is very happy with where I am at. I am in no hip pain. My PT is actually worried about me overdoing it, which is a problem I never had with my knee surgery. In fact this whole recovery process has been like day and night to last year's. I feel very confident in my ability to walk on my hip (even over a year later I am not sure I can say this about my knee) I also am in no pain (which I can NOT say right now about my knees). To make up for the lack of pain in my right hip, my left hip as well as my knees and shoulders have been acting up a ton! I am hoping to be completely off crutches by next week, and hopefully that will help my other joints calm down.

With just over two weeks to go until my hip surgery I am getting nervous. This feeling has really surprised me, this is the 3rd surgery I will have had. Ok so for the first I was only three so I did not exactly know what was going on, but last year when I had knee surgery I did. Before the knee surgery there was not a definite plan, the doctor would go in and see what was happening, and hopefully fix it. Well that kind of happened but not totally. Without a plan I should have been nervous before that surgery but wasn't. So I don't know why I am sitting here over a year later, weeks before hip surgery, one where I know exactly what is going to happen nervous? Maybe it is because nothing was going right for so long? Maybe it is because my hip will be dislocated? Maybe it is the possibility of missing three weeks of school? (Hopefully I will only miss one week) What scares me the most is if it doesn't help, what will be next? Or what if the biopsy comes back positive for

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 i

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 kne

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 ab

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 struct

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