Last Convention

I have been meaning to write for a while now but I have been stressed and college stuff has gotten in the way.

On Wednesday I had my last PT appointment for my right hip! It was a bit early, but my insurance cut me off since my hip is doing so well. I will be back soon enough after my left hip surgery anyway. I will continue to do my exercises at home but it will be a nice break for a little while.

This weekend I went to my last youth group convention *cue the tears*. I had an amazing time with all my friends but it was a reminder of how weak and messed up my body is. Thursday night was senior night and we went swimming in the hotel pool. Well my arms where tired after about 30 seconds of treading water, I have no idea how I am going to deal with crutches again. I woke up a few times during the night because of hip pain.
My Paper Plate Award and Lanyard (my friend put the golf coordinator ribbon on to  make fun of the fact I had to use a golf cart at one convention when I couldn't walk)

The one thing that was really sad is two of my friends are going on my youth group's gap year program in Israel next year. I am so excited for them, but I was supposed to be going with them. So it was hard to listen to people talk about that program through out the weekend, even though I am so happy for them.

To end on a positive note on Saturday with the help of a lot of heat, ice, and Tylenol I managed to dance for about an hour. I am currently paying for it but there is no way I would have been able to even go near the dance floor a month ago.

Spring Break!

Ok so my spring break may not of been the most exciting, as I think I spent more time at PT then anywhere else, but it was nice not to spend the entire time in bed because of pain. In fact my heat pad only came out like once, what is this craziness?

PT has been going great since I stopped flaring! As of Wednesday I am doing every exercise I had to stop because of my knees during the flare, plus new exercise. I am finally done doing pillow squeezes and glute sets, I now have very few table exercises. As of next week I am down to only two PT appoints a week instead of three, which means I won't have to go before school anymore!

I did do something besides PT this week, I went prom dress shopping! I found a gorgeous blue and white open back gown. I am not going to post a picture until after prom but I love it. It fit perfectly but if I gain an ounce it will be an issue or if my hips choose to swell prom night. I also have amazing shoe, they are silver stilettos and over 3 inches tall! My PT would probably not be happy about that.

Shoes this gorgeous are worth it!

Living Life

I have been writing less frequently because I am too busy living life. I have had very little pain since starting Voltaren. I must say I much rather be living life then just be blogging about it! Even my hands haven't been getting painfully cold or turning colors lately!

This weekend I went to a Temple admitted students day. It was so much fun to see the campus again  and even more exciting since I will be there next year! The fact I am going to be in college next year has not totally sunk in yet.

The only think I am freaking out about a bit is orientation, since freshman sign up for their courses when they go to orientation. The earlier you go the better selection you have. The assistant dean of the College of Education was encouraging me to go to the first or second one. The first one is June 27(or that weekend anyway) and I am having surgery on June 24. I was really hoping to wait till after I was off crutches, but after talking to the assistant dean I decided I might be better off going as soon as possible even if I am still on crutches. When I told him why I couldn't go to the first one he said I should contact disability services if I am still having mobility issues when college starts. He was really nice, but there is no way I will let that be an issue by August. I am a bit frustrated by the fact I will probably be on crutches for orientation, but on the bight side I was walking around for the majority of the day and my joints were only minimally achy at the end of the day.

I acquired a bunch of TU swag over the course of the day!



I Am Still Me

In the past two years it seems like my medical issues have become part of my identity. I am the girl always on crutches or limping, the one who doesn't participate in gym. No one asks where I am if I am not it class, they know I was probably at a doctor's appointment or if I come in a period or two late my friends know my shoulders are probably having a bad day so I had to take a bath to get rid of morning stiffness. I am not sure when it happened but people are now more surprised when I can walk then when I can't. 

Sometimes it is really hard for me to move past the medical parts of my life, because it does affect all the others, but it is important that I do. I try to do everything I used to do, which is hard but aside from athletic activities I have done a pretty good job managing. I can't always do everything I want to but I prioritize. 

There are a couple things I refuse to let my health affect. Debate is something I don't let get affected, since I have to commit in advance to a partner and I hate breaking commitments I have managed to go to every single debate I signed up for (even though there were a few I just knew I couldn't handle). Another facet of my life I have not allowed to change it my job. I work at an after school childcare elementary school and while it can be taxing I love it, and I know if there is a sub it affects the students, and I can't bare to do that.
My Best Friend/Debate Partner(right) and Me(left) at State Debate Finals

There are two things that really help me, hope and perspective. (and music never hurts!)

Hope is something I refuse to lose. I have kept it for this long and I am finally seeing progress in my treatment. Voltaren seems to be the answer to my prayers because I have been more pain-free this weekend then it the years before. After all if you do hit rock bottom that only means the only place you can go is up.

Perspective is so important. A year ago today I was on the March of the Living. A year ago today I walked out of Auschwitz, that is am amazing statement. I will never forget that, it will always help me look at life in a more positive manner. I walked out of the place my great-grandparents died because of there religion.

Walking out of Auschwitz

Taking the Good and the Bad

This week has had some real great days and some real bad days, in terms of both my joints and the rest of my life. Even though it seems easier to concentrate on the bad I am really trying to focus on the good things in my life, because there are some.

The Bad

  • It was decided due to my health I cannot go to Israel for a gap year program like I had been planning.
  • OS and Rheumy still disagree on who should be dealing with my knees.
  •  Hip surgery is going to be right after graduation.

The Good

  •  My OS said I could join my college's equestrian club!
  • I woke up today without any stiffness and almost no pain!
  • I was able to do things other than table exercise in PT today!
Little Me Horse Back Riding!

Back and Forth

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 print out of them so I will show them to my PT tomorrow.

The rheumy appointment was next. My rheumy just moved from the rheumatology floor to the pediatrics one, which I like a lot more. It is all colorful and everyone is so friendly, and they even offered me a snack while a waited(although since it is still Passover I couldn't have it). Last week she changed my NSAID from relafen to voltaren. So I started taking voltaren on Friday, it is stronger then relafen, which of course means more of a possibility for side effects. Hopefully it will start to work more in the next few weeks, I am currently at 100mg once a day but if needed it can be switched to 75mg twice a day. She examined me as always. When the knees came up she also thought there were probably a combination of thing, but unlike the OS she thinks there is an ortho problem involved. So we are still playing this game of back and forth. When she examined my shoulders we discovered most of the pain is in the muscles not the joints and the muscles are tender.

Just in case there is something more to my shoulders I went to get them x-rayed, which was pretty uneventful. Tomorrow we can all for the result but I doubt anything will show up.