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

In the past couple months of my life I have felt like I have been trying so to get my health in order but the harder I try the worse it goes. At my last rheumatologist appointment about 2 months ago between my knee pain and lost ROM in my left hip we decided maybe it was time to try PT again. I was ready to hit these problems head on. Prepared to make PT work. It HAD to work. The other options weren't pretty. If it didn't I would probably be sent for a knee ultrasound (that isn't the bad part, and then either Prednisone (a.k.a. Satin's Tic-Tacs) or even worse sent back to ortho. Last time I saw my ortho he told me to come back when I was ready for knee surgery. I went to my PT evaluation hopeful. I soon found out my PT also had a hip scope for FAI. Everything seemed to be going well. I made a lovely sticker chart to keep track of ding my home exercises everyday. It had glitter! And owl stickers to go on it! What more do I need to keep me on track? My second

Look at this girl! It has been a year(plus one day) since I have had my last surgery! And there isn't any surgeries that I know of in my future! I have not had to go to PT is about 9 months! This is what I call crazy! My left hip is doing pretty great! It is stronger than it has ever been. If you had told me a year ago that less than one year post op I would run a couple miles cause I could I would have laughed in your face. I am at a place I could never imagine I would be at. I do still have active enthesitis in my left hip, so I m not yet pain free but it is a completely separate pain than FAI and/or a labral tear. My rheumy even comments how much more ROM my hip has then when I first saw her, when I was only a couple months post op. If anyone is thinking of have a hip scope for FAI or a labral tear I would definitely recommend it! It was one of the best decisions I ever made. You can barely see the 3rd scar! This side actually looks better than the right.

I haven't ha time to write in forever. Over winter break I was working two jobs (one was full time and one was part time) so I have barely had time to breathe. I am happy to be back in school I actually have more free time to just hang out. In good news I think I forgot to write that back in December my OS released me from his care, yes that means no more appointments with him or at HSS. I can't believe that after all I have been through I am done with Hospital for Special Surgery. I definitely will not miss that place, although the doctor did add something about calling him if my knee gets worse...you win some and you lose some. As far as the whole Celiac thing is going, that has become quite an adventure since getting back to school. My school has a gluten free area but it hasn't been stocked since getting back from break, so each time I try to get food I have to chase down someone to get me some frozen meal and then I have to microwave it, the whole thing is really f

No one will ever be harder on yourself than you are. When I was diagnosed with AMPS a couple months ago I was told I needed to push through the pain. This idea was reaffirmed when I went to see the PT and OT at CHOP. This is what I have been doing. I have not missed a single class because of my health yet this year. Besides for when the Mobic did not work I have not gotten to the point where I have called my Rheumy. I have not missed a commitment or scheduled event. I am proud of all these things but at some point the pain started getting even worse this week, something had to give. I did everything I normally do plus put some of the anti-inflammatory fancy cream on a few joints. It is homecoming weekend, I was going to push pass this flare, I had to push passed it. Two weeks ago I had decided I was going to go out this weekend, yet here I am writing this blog post instead (not that I don't enjoy blogging but...). The past couple of mornings haven't been pretty. I have ha

I have been so bad about updating this blog! Mobic did not go well, I only last about two weeks on it, then I switched to Celebrex. Celebrex is supposed to be the easiest on the stomach of all NSAIDs, well cause I am me that is not how it worked out. About a week or two into taking Celebrex my stomach pain got a lot worse, I actually thought I had an ulcer. It was not fun at all. So I went to student health services and had to see a nurse before I could get a doctor's appointment. Right away it was agreed on I needed to see a doctor as soon as possible, but the next available appointment was not till the next day. When I did see the doctor he was really great and prescribed Protonix to replace Prevacid, but did say if I have anymore stomach issues I need to see a GI specialist which I would like to avoid. He also confirmed that it was probably gastritis and not an ulcer but went over all the signs to look for. The doctor also said he would try to do some reading on NSAID induce

I manage to survive all three of my appointments yesterday somehow. First up was my OS for the six weeks on the left hip and six months on the right hip. He was happy with where I was with both and said to worry about the motion but focus on the strengthening. When I asked for a cortisone injection in my left knee he said okay, but at first he said that he thought the pain in the left knee was probably referred pain from the hip, but after he examined it he did notice fluid. I also ask for a prescription for a home TENS unit, so that is being ordered as well now. My last question for the OS was when can I start horseback riding again? In 6-8 weeks (at 3 months post-op) I can start riding a little but no jumping, and I can ride without restrictions at 4-6 months post op. The rheumatologist appointment was not exciting, I may eventually get an MRI on my left knee but not for a while since I just had a cortisone injection. We aren't changing any meds or anything. I was not total

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

Oh yeah, this girl does if she ever wants to get on a horse again. At 4 weeks post op I am doing very well, no pain with weight bearing at all. Yesterday I did not use even one crutch once, that beats my last surgery by about a week. However I am struggling a bit with gaining back my ROM. I am completely frustrated, I figured ROM would be no problem because last time around I had a larger ROM then pre-op around week 3, but this time no. I got my extension and flexion without issues, my internal rotation does not seem bad either, it is just the stupid external rotation. Of course it would be the one direction that is essential to horseback riding. Even Getting it This Far HURTS!!! I am not going to give up quite yet though. I plan on stretching it for a few 30 second periods (if I can last that long) at least twice a day. It will get better, it has to get better. My PT said I may never be able to ride without pain again, but he didn't say I can't ride. I don't need p

First some exciting news, I get to wean myself off crutches! Basicly my PT has decided I can make my own decision, so right now I do not use them at all in the house and bring them with me when I go out, tomorrow I will have a day with a lot of walking but then I plan on definitely being down to one or none all the time. Heat then Ice and Stim @ PT (my favorite parts) Thursday I went to the rheumatologist. She thinks I had gastritis (which is the inflammation of the stomach) caused by long term NSAID use, which is what caused the horrible stomach pains. Currently NSAIDs still seem lie the best treatment option since we finally had found one that works. She decided to switch me from Prilosec to Prevacid for the side affects and restart the Voltaren, so today was the I took Voltaren with Prevacid for the first time and hopefully I will not get gastritis again. My rheumy thinks the two things that are my biggest problem right now are my crutches and how lax my joints are. She want

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

I can not believe it has been a week since I last wrote, so much yet so little has happened. I still get to spend about 6 hours a day in the CPM machine, as well as wearing my oh so lovely hip brace when I go out. At this point I am in almost no pain. I also had to get new crutch tips because chunks of rubber were coming off of my old ones. Oh and do you see that split in the top? On the 4th of July I did not do much during the day, I decided to get through my CPM time so I could go out at night. It was nice to get out since I did not go out much last week except for various doctor appointments. I made s'mores and watch fireworks with my friends. My friend was very insistent that the chairs were stable and I should sit on one because of my hip. S'mores Selfie Fireworks! On another note, today I had an opthamologist check up, and I am happy to say I am Uveitis free! It was the first time I had discussed the possibility of me finding another specialist at

Post Op Day 4 I did not do much besides hang out in the CPM machine. Although I think this was the first day I was completely off painkillers! Post Op Day 5 After doing my 6 hours of CPMing I went to my friend's graduation party! Ok so dresses and hip brace do not look great together but as long as the dress is a bit shorter than knee length it is do able. I spent a good amount of time sitting with my feet in a pool as my friends swam but my lower back/hip started to hurt so I decided I might be better off in a chair with a back. I slept over after the party, I actually slept pretty well on a couch it probably helped that it was around 3:30 am by the time I went to sleep. Post Op Day 6 I left my friend's house around 11:00, as most of my friends were getting back in the pool and I still needed to do 6 hours of CPMing. My big accomplishment of the day was biking on the stationary bike for 20 minutes. 1 Week Post Op! I survived the first week a lot better this ti

Post Op Day 2 We receive a phone call saying that I have hit my annual cap for insurance.  Cue major freak out. Well then I found out it is just PT they are cutting off, which is still not ok but not quite as scary. My PT said he will work with us to make sure I can still see him and I plan on fighting the insurance company because we are not supposed to have a PT cap, and someone told me it is illegal to have one in the state of CT, so if anyone knows information on that please share. I still had my first PT appointment as planned. My PT was very happy with where I am at and said I look more like 2 weeks post op not 2 days. I was told to do glute sets, modified pelvic tilts, and my all time favorite exercise (cue lots of sarcasm)... quad sets. I cannot wait until I am allowed to weight bear more so I can stop the table exercises. All was ok though because I got to end with ice and stim. I even somehow managed to go to my friend's house for s'mores. I am not quite su

I am home from the hospital from hip surgery number two! I probably wouldn't of stayed over night except my surgery wasn't till 3:30 pm. The big discussion pre-op was what kind of anesthesia I should get because I got a spinal headache from the spinal block last time. My OS was still adamant that he thought I should avoid the general. I was also really scared about the general because I had been told it meant I would need to be intubated which I did not want. When I talked to the anesthesiologist he had a very different take on the situation, he said I had a very high risk of getting a spinal headache again because I am above normal height, I am a teenage girl, and I had a spinal headache four months ago. He said if I had a general I may have of miserable night, but that would be compared to three or four miserable days if I got a spinal headache. He also used an IV only version of the anesthesia instead of gas which reduces nausea, plus the fact I do not get nausea from