Life with a Flare

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...

Being chronically ill in college comes with many obstacles. One of the hardest ones is avoiding normal people illness. Being an education major makes this even harder. I spend lots of time in elementary schools and so do most of my friends do as well. It is safe to say there is always something going around our classes. On top of that no one ever wants to miss a class especially since we are on a Tuesday/Thursday schedule to accommodate our field placements (which I totally get because I hate having to catch up what I miss). This leads to my classmates coming in to class sick all the time. Once one of our professor even came in and told us she had a low grade fever. For me this is really scary. Let me give you a little history of what has happened to me when I have gotten normal people sich since being chronically ill. In high school one I had a small cold or bug that was only bad for a couple days but then triggered a had joint flare, forcing me to miss multiple days of school (no m...

Many people have asked me how and why my cardio decided to do IV fluid therapy. I will preface this with I have a very specific set of circumstances so what works and doesn't work for me will not be the same as for others. We have known for as long as I have had Dysautonomia symptoms that IV fluids made a huge difference. When I first fainted during my hospital admission in July the doctors immediately upped my fluid rate from 100ml/hour to 150ml/hour during the day and I had no more issues. Furthermore any time I have been put on IV fluids my heart rate stabilizes and doesn't jump when I stand. During my hospital admission in November I was actually kept an extra night for fluids because my body just couldn't seem to wean off them. In the recent months I have been in the ER about every other week for fluids. So while I never did a trial run like some people have ask, we knew IV fluids would help me. Fluids was not the first treatment option I tried and is not the only ...

It is hard to believe that I had a major hip surgery a year ago. Recently I have been reading some of the post I wrote leading up to the surgery and right after. It amazes me how far I have come. The past year has been such a roller coaster for me, there was a point where I felt like I was just doomed to be on crutches forever. This week I ran a mile. That's right I actually RAN! I really never thought I would be at this point. The first week after surgery was probably the hardest week of my life. Quite frankly I don't even remember what my hip felt like that first week, but my head as pounding. The spinal headache I had made me think I was going to die. There was one point when I just cried for a half hour because I couldn't even lift my head without getting dizzy and nauseous but I couldn't fall asleep because I was on caffeine pills. Thankfully it subsided without needed another spinal procedure (I might have flipped as I am now very afraid of needles anywhere ne...

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...

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...

Yesterday afternoon I went to the rheumatologist, then today I had x-rays, then OS, then the PT from HSS. I will start with the rheumy appointment. It was actually pretty uneventful because I am doing pretty well right now finally. The one thing we discussed was lowering the dose of Voltaren because of some GI issues. I am pretty reluctant to mess with the Voltaren at the moment, between my internship at a preschool, my nannying job, and prom coming up I really do not have the time/energy for a flare (not that it makes a difference). Since I have to stop 2 weeks before my hip surgery anyway I am waiting until after then to change anything. I was also given copies of my blood work from a week ago to give to the OS, so with any luck I could not have to get more pre-op blood test. Apparently they need blood tests from 30 or less before surgery, so the last test misses the window, but it was worth a try. At my OS appointment appointment we talked about the issues I had with the last ...

I can not believe the surgery was only three months ago. My hip is doing amazing. There are times where it aches but mostly it doesn't hurt. I can actually touch my toes again! I was worried going in to this surgery, my knee surgery did not work out great. Honestly I am nervous about the next hip surgery as well, but I am hoping because this surgery will be just as successful. I can drive for over an hour now! My hip no longer clicks! The most important thing this surgery has given back to me is hope. I was starting to loose it. After years of pain and no answers I was struggling to keep going each day. Now I have had such a turn around, successful surgery and working medications. I am so excited to start college on a positive note!

Today I had a busy day at HSS, 1st was a my 8 week post op appointment with my OS, next was a PT appointment with one of the HSS hip PTs, then we went to see the rheumy, and finally I had shoulder x-rays. The OS appointment went ok. The hip part was good, the right hip is doing really well and I scheduled surgery for my left hip, which is not as great of a candidate for surgery (not as clear cut of a case) but we are taking the fact my right is doing so well as a predictor that hopefully. That will be on June 24, two days after I graduate from high school. I was less happy about the knee situation, he said he thought it was a combination of referred pain from my hip and an autoimmune issue so besides the PT he prescribe the rheumy should really be dealing with it. Next of was the PT at HSS. This appointment was not as horrible as I thought it was going to be, but pretty pointless. I was just given a few more strengthening exercises. The PT gave me a pri...

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 ...

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 i...

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...

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 Relafe...

Before I had hip surgery I had been taking Relafen with is a prescription NSAID and it had a helped a little bit, definitely with my knees (along with the euflexxa). However I had to stop it two weeks before surgery. After surgery I was put on Naproxen, another NSAID, which is basically prescription aleve. While Naproxen does just as good of a job as Relafen, it can be harder on the stomach and more likely to cause problems. About a week after starting it I realized if I did not drink a full glass of water after taking it my throat would start burning, and starting a couple days ago I would drink two cups of water and eat food and my throat would still burn, even though I was even taking a prescription antacid with it. And I don't mean burn for a few minutes, it would for a few hours. After e-mailing with my OS's PA I was told to stop taking the Naproxen and I could take regular aleve if I wanted instead. Of course I have a really big debate tournament ...

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.

Tonight I went to a Purim carnival, for those who don't know what Purim is, it is a Jewish holiday where people dress up. I decided on a penguin, so I could make my crutches wings. I thought it was a good idea, but since it was the first time I had seen most people there since I had surgery, they couldn't get past the fact I was on crutches again. Mind you it has been a year since the last time I was on crutches. Everyone kept asking if the crutches were my costume. Why would I ever use crutches for fun? Ever? Peoples reactions are really starting to get to me. Some people just stopped bothering to react to the fact I am on crutches, again it has been a year! Others tell me I am too young for hip surgery, well my hips disagree! Some people ask but don't know how to react when I tell them I had hip surgery at 17. Some people automatically assume there is something wrong with my knee, which I understand if they are aware of my knee problems, but if not they shoul...

Ever wonder how to really confuse a radiology department? All you have to do is show up for a hip x-ray then come back an hour later for a hand ultrasound. Now about the hip and everything. The appointment went really well. We went back over the fact the hip was worse than expected, with the added information that there was a bone spur. Even though it was bad I am doing really well with recovery. I got the ok to ditch the brace. In a week I get to stop using the CPM machine(I am going to have so much free time!) and in a week I also get to wean off crutches! I was done with the OS before 8:30, even though my appointment wasn't even till 8:45! Even though my ultrasound appointment wasn't supposed to be till 11 we decided to go radiology to see if they could fit me in sooner, and they usually are pretty flexible so I got in pretty quickly. However since I was there an hour earlier, getting another type of imaging on another body part ordered by another doctor, there was a bi...