Sharks!

I just got back from the shore with my mom and brother. I had a great time and was so happy to finally get out of the house and do something exciting. It rained all day on Thursday so we spent the day relaxing. We watched the season premier of the Jersey Shore that night as it was only fitting. Ever since I was little we have always gone to Seaside Park-located next to Seaside Heights and no more than a 2 min drive down the street. These days Seaside Heights, NJ is known primarily for the "reality" TV show the Jersey Shore. And yes-we drove by the Jersey Shore house many times during our 3 day trip. In fact we actually saw Snooki, Sammi and Pauly D being filmed coming out of their house and walking to work on the boardwalk. Although the show is beyond ridiculous and in no way accurate- it was definitely a highlight of our trip.

On Friday we spent the day on the beach and the weather was gorgeous. Lately, there have been shark sightings in Seaside Park and Friday was one of those days. While I was reading my book I heard the lifeguard blowing his whistle and people started to exit the water, gathering near the ocean. There had been a shark sighting near the pier down in Seaside Heights and they were making their way towards our beach. We all stood staring out into the ocean waiting. All of a sudden everyone started yelling and sure enough 2 sharks came swimming by-less than 70ft out. About 15 minutes later some guy fishing caught one of the sharks and everyone went crazy. He ended up letting the shark go and was interviewed for Channel 12 News earlier today. However that's not all. Today a shark washed up on shore and had to be guided back into the ocean by a group of guys. It was by far the craziest thing I have ever witnessed at the beach. Shark week begins tomorrow.

In a way this trip to the beach was a test to see how my knee and hip would feel. I am very happy to say that my hip doesn't hurt at all and I even walked without the crutches this weekend-only for short distances of course. My knee feels better but still hurts. I have been wearing the knee brace that Dr. Shiple prescribed and definitely feel more stable. I will be getting more injections on Tuesday and hopefully that will be the end of my knee pain. I will still see my surgeon in August for my post-op appointment and knee evaluation to make sure everything is going well.

I have a holter test scheduled for Wednesday/Thursday of this week and I am hoping it answers some questions. I am hoping that my cardiologist figures out why my O2 levels decrease. I also found out that I have B12 deficiency anemia and will need to have shots once a week for a month. Seeing as every Tuesday I have 40+ injections in my knee, I think I can handle one shot, once a week.

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Beach!

I am so excited! After physical therapy today my brother and I are going to visit friends at the beach for a couple of days! This will be my first trip to the shore all summer. It's going to be challenging getting on the beach with my hip and knee but I will manage. It'll be great to get out of the house and do something fun. For months I have been craving a California Chicken sandwich from a pizza place down the shore. I will definitely have to eat one while I am there this weekend.

I am actually looking forward to PT today. Maybe today I will walk by myself over the cones! What an accomplishment that would be! I had a really good day yesterday and worked really hard even though the exercises were very difficult. Some of the muscles we targeted haven't been used in several months so I had to teach myself how to use them properly.

This morning was my course scheduling appointment with my advisor. I registered for one class (SJU) as the others were closed. My advisor is contacting the departments and teachers to see if I can be added on. Developing my schedule is a bit challenging. We are trying to schedule classes on only 3 days in order to accommodate my physical therapy schedule. Also due to my hip and knee limitations I have contacted the disabilities director and will be meeting with him next week to discuss other possibilities.

I talked to my gymnastics coach/boss today about returning to work. I am not ready just yet but wanted to give him an update. Once my course schedule is finalized I will be able to determine what days/times I work during the week. I will be working with the level 4's this season which I am extremely excited for. Unfortunately the competition season doesn't start until December so I don't know how many meets I will be able to attend before my surgery in January/February.

I have a lot to look forward to in the upcoming weeks-including a week at the beach with family and friends. I am also ready to get back to school (at least for a semester) and get back into a structured routine.

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Cardiologist and Blood Work and PT...Oh my!

Today was a busy day-as is to be expected all week. I had a cardiologist appointment this morning to discuss my lightheadedness and chest pains. The doctor had me crutch down the hall with an oxygen monitor on. We learned that my oxygen saturation levels drop during activity which is not normal in someone my age. I was only crutching a short distance and the drop was pretty dramatic. I will also be doing a holter test in August to check for arrhythmias and/or other possible irregularities with my heart. Hopefully the tests come back negative but until then we wait.

After my cardiologist appointment I went to the lab for some blood work. Dr. Brown (my PCP) had ordered some tests last week at my appointment and I finally managed to get that done. However, the cardiologist also ordered blood work (STAT) and it wasn't until after the lady poked me 5 times and completed Dr. Brown's orders that she told me I couldn't have a STAT test performed at that location. STAT tests need to be performed at a hospital because they require fast results. It would have been nice to have known that BEFORE she started the test as I would have preferred doing it all at once. I am really not a big fan of needles, especially when my veins are a bit stubborn. I have one vein in my left arm that seems to work. Of course, I shared that with the phlebotomist but she didn't listen and proceeded to poke a vein that typically collapses. Well of course it did and I was left with a bruised and throbbing arm.

Today was my first PT session for my left (PAO) hip. Overall it went well. My knee hurt the entire time but at this point I need to just suck it up and push through. Cam said that when my hip and quad strengthen my knee will start to feel better. Some of the exercises felt very strange but weren't painful. I definitely feel restricted in terms of mobility and ROM. I was told that it's normal and expected because my hip is positioned differently and my body is used to my hip being loose and shallow. One of the big focuses now is weight-bearing. I did more weight-bearing exercises today than I have in the last 3.5 months combined. I still have A LOT of work to do to strengthen my hip and quad and restore function in my leg. Strength is very important, especially given EDS. My muscles are what will support me in the end. I will continue to have physical therapy 3 times a week for my hip/knee.

After PT my mom and I went to the hospital to have the STAT blood test done. Everything went very smoothly and I was in and out in about 15 minutes. The lady listened to me and used the vein I told her to. The test itself probably took 2 minutes.

Tomorrow is another busy day. I have PT in the morning and Dr. Shiple right after for more injections. It's great having Dr. Shiple work out of the Excel location. It makes travel arrangements (I can't drive yet) and communication between physician and therapist so much easier. I am also starting to make preparations for going back to school in the fall. I have been in touch with the disabilities director at SJU and my advisor to schedule classes. Hopefully I can schedule my courses to allow for work and physical therapy. Also, since I am commuting it would be nice to not have to drive to Philly everyday. I am looking forward to creating my schedule. I'd love to buy my books and visit the campus to find my classes.

If all goes according to plan I may head up to the beach on Wednesday with my brother to visit friends. I haven't been to the beach all summer which is very strange. Every summer my family goes to the beach for a week with several other family friends. We rent the same house every year and it's always a blast. However I usually have more than one weekend trip. This year has been different because of my hip surgery and recovery. I am still going to be limited but it'll be great to relax at the beach with friends.

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Phew!

Today was a VERY busy day. Overall I'd say it was successful. I had my 8 week post-op appointment for my hip, lunch with some Hip Chicks, and an appointment with a genetic specialist to confirm Ehlers Danlos Syndrome (I will explain this in detail).

My post-op appointment went extremely well as far as my hip is concerned. We arrived at the hospital early to avoid Boston traffic. This meant that I could get my x-rays out of the way. After my x-rays my mom and I watched Spongebob on TV in the waiting room. I felt as if I was losing brain cells-I can't believe I used to watch that show everyday. I also met another Hip Chick and we talked for awhile before my appointment. My appointments usually consist of groups of fellows and residents however today I just saw my PAO surgeon. He reviewed my x-rays and said that my bones are healing very well and I am ahead of schedule. I can actually start walking if I have no pain. However, my knee instability and quad atrophy issues will prevent me from full weight-bearing. I really need to solve this knee problem (soon) because I am even more anxious to ditch the crutches and learn how to walk again. It's been awhile. My elbows have been really sore lately because they hyperextend when crutching. I have an appointment in August to see my surgeon about my knee. That will also act as my 2nd post-op appointment. Right now I just need to be patient and work on getting my quad muscles firing so that my knee can stabilize enough to weight-bear. Of course it's easier said than done.

After my post-op appointment I met two Hip Chicks for lunch. I had a great time and was really excited about meeting them. They were both very nice and we had a lot to talk about. It was nice to finally put a face to a name. Hip Chicks has been a huge outlet for me. The women are so wonderful and really understand what it's like to live in chronic pain. There are a bunch of Hip Chicks who have had or are planning to have hip surgery with the Children's Hospital of Boston hip team. It's really neat to compare experiences with others who have gone through this.

After lunch my mom and I visited the Harvard Coop where we shopped for a bit. We then headed to Brigham and Women's Hospital for my last appointment of the day. Something I haven't mentioned yet in this blog is that I have ligamentous laxity and hypermobility issues. I was diagnosed several weeks ago (by Dr. Shiple) with Ehlers Danlos Syndrome (type 3-hypermobility). Ehlers Danlos Syndrome is a group of connective tissue disorders. Connective tissues are proteins that support skin, bones, blood vessels and other organs. They make up about 80% of the human body. There are 6 subtypes and they vary in severity from mild to life threatening. There is no cure and treatment plans are individualized. I have the hypermobility type which is generally considered to be the least severe. An unusually large range of joint movement (hypermobility) occurs with most forms of Ehlers-Danlos syndrome, particularly the hypermobility type. The loose joints are unstable and prone to dislocation, chronic pain, and early-onset arthritis. Muscle strength and joint preservation are very important in preventing dislocations and early-onset arthritis. There is also a connection between hip dysplasia and EDS. I also learned that EDSers tend to be insensitive to novacaine and lidocaine which explains why injections never work and I can feel my dentist drilling after 10 shots. Not many doctors know about EDS so I was told that I should see a specialist. Another Hip Chick recommended a doctor in Boston and they were able to squeeze us in for an appointment during our trip. They were very helpful. Dr. Murray confirmed that I do in fact have EDS type 3. At this point I am just dealing with the symptoms as they appear. I will be having my right hip fixed in the winter and hopefully that will be my last surgery for awhile.

It was a very eventful day. I am so excited that my hip is healing so nicely. I am glad that we were able to meet Dr. Murray and receive a confirmation diagnosis. I can now set up a lifelong exercise and joint preservation program to keep my joints as stable as possible and avoid dislocations/subluxations. Thankfully I have a great sports medicine doctor and therapist to help get me on the right track.

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44 but who's counting?

I had my second round of injections yesterday for my left knee. This time I had 44 shots and thankfully the ice pack didn't leak all over my leg. Dr. Shiple also prescribed lidoderm patches to try and alleviate some pain. The swelling has gone down and I still don't seem to have any pain relief. Hopefully I notice a difference by next Tuesday otherwise there is not much more Dr. Shiple can do.

I also had an appointment with Dr. Brown (my primary). She is sending me back to the cardiologist to have my heart checked again as I have had pre-syncope (pre-fainting) episodes with chest pain since being discharged from the hospital. I also experience chest pain when crutching up the stairs. Something about being lightheaded and having chest pain isn't normal. She mentioned that major trauma to the body-such as surgery-can bring out signs and symptoms of a pre-existing condition. I saw the cardiologist 2 months ago and was told that everything is fine so I am sure this is just precautionary. I may have to do a holter test (wear heart leads for 24 hours) but that's nothing compared to everything else I have been through. The pre-syncope episodes are also consistent with Orthostatic Hypotension (which I was informed I have). Basically, my blood pressure drops when I transition from a lying down position to standing leaving me lightheaded and feeling as if I am going to black out. Thankfully this doesn't happen every time but it is something that I need to be careful of.

We started our journey to Boston last night, making a stop in NJ. This morning we visited US Gym (my gymnastics club) and I saw my coaches for about an hour. I really missed them. My mom and I arrived at my aunt and uncle's house a couple of hours ago. My mom and I will be heading into the city tomorrow morning for my post-op appointment (8 weeks). I have to get x-rays taken to see if my bones have healed enough to start formal PT. I think that I will be given more weight-bearing privileges, however, my knee complicates everything. Hopefully my PAO surgeon has some answers as to how to deal with my knee pain and subluxations. I will be traveling back in August to see my surgeon if my knee problems haven't calmed down by then.

Tomorrow is the day I also get to meet 2 Hip Chicks for lunch. I am very excited about meeting them : )

Random side note: For those of you who are still using a PC computer/laptop-I suggest you make the switch to a mac before you cause yourself unnecessary stress. I was skeptical at first but I am in love with my macbook pro : P

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Knee or Hip?

I just got back from physical therapy. For once I didn't leave in tears which must be a good thing. I worked on some standing with Cam although it was probably considered "fake" because I barely applied any weight. We talked about my post-op appointment this Thursday. Cam said that if I am cleared to start PT for my hip then I may have to push through the knee pain. Dr. Shiple will have to confirm that pushing past the pain won't cause anymore damage. He is concerned about my hip not progressing and healing properly because I haven't been able to weight-bear. I may need to get back into the gymnastics mentality of "no pain, no gain" and ignore the knee pain while I start to rehab my hip. I will still continue with PT for my knee but it will have to be on separate days. Basically, I will be spending 4-5 days at Excel.

I no longer have PT tomorrow which I am thrilled about! Cam doesn't think it will do me any good. Instead I have an appointment with Dr. Shiple for the 2nd round of injections..yay! I also have an appointment with Dr. Brown (my PCP) to have my health packet filled out for school and discuss my dizzy spells that I have had since the hospital.

I leave tomorrow to head up to Boston. I will be staying with my aunt and uncle again which I am excited about. I love spending time with family. Thursday is my post-op appointment. I expect good news as I haven't had any hip pain since I woke up from surgery! My knee complicates everything. I should have some restrictions lifted, be given more weight-bearing privileges, and be cleared for formal PT. However, the weight-bearing is going to be a challenge because my kneecap pops out with very little force. Maybe Dr. Kim will have a solution to that. It'll be nice to finally talk to him about everything and see how he thinks I am progressing. He has been out of the country for the last month and left after my surgery for a conference.

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Busy Bee

Tomorrow is a VERY busy day for me. I have PT at 10-which means more pain, a consultation for acupuncture at 12:40, and a hair appointment at 2. We also have family friends visiting tomorrow which I am really looking forward to. Hopefully I am not in too much pain to enjoy their visit.

My therapist figured out why I felt like 500 hornets were attacking my knee (after 46 injections). After the injections I was given an instant ice pack to use while I waited to be picked up as my knee was extremely swollen and painful. The ice pack was leaking chemicals all over my injection sites and leg. Of course! At least it's good to know I wasn't reacting that way because of the injections. However, it doesn't seem like the injections are working too well. I am in just as much pain as before if not more due to increased swelling. I'd really rather not go through that again!

My mom and I are heading up to Boston on Tuesday night. I have my post-op appointment on Thursday and I am meeting up with two Hip Chick friends for lunch (we all have appointments next week). I am really looking forward to meeting them. I am expecting good news regarding my hip and hopefully some restrictions are lifted. I may even be able to start formal PT. I still have no hip pain to speak of which is a really good feeling. My right hip isn't doing well but with my knee pain I just ignore it. I'll take care of that this winter.

On a side note and completely irrelevant: I recently made the switch from a PC to a mac after 30+ people told me I was missing out. Okay so maybe it wasn't 30 people but it was pretty clear I was wasting my time trying to fix my laptop. I now have an adorable macbook pro that I am trying to learn how to use. I have been with PC since I first learned how to use a computer so this is new territory for me. At least I have PLENTY of time to get acquainted with a new operating system.

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Life...

Life's like a deck of cards...you have to make the best of the hand you're dealt!

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Lovely

I had 42+ injections in my knee today. The goal is to alleviate some pain in order to tolerate PT. Patients are supposed to experience numbness or pain relief for 6-7 days following the injection. Instead my body likes to respond differently. I have extreme pain all over and a burning/stinging pain that feels as if I was just stung by 500 hornets! I have another set of injections scheduled for next Tuesday although I am not sure I want to go through with it-especially after todays experience. I have included a picture for your enjoyment!

Million Dollar $$ Question: Which knee did I have injections in?

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A Letter to my Knee

Dear Knee,

I HATE YOU!!!!!

Love,
Jill

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FIFA World Cup!

Today was the final game of the FIFA World Cup (Netherlands vs Spain). It was predicted by Paul the German octopus that Spain would win. He was right. In the 116th minute (second half of overtime) Spain scored. The octopus went 8 for 8 in the world cup predictions! Congratulations Paul!

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Looks Like Another Trip!

Unfortunately I was unable to make an appointment with my surgeon during my post-op visit in 2 weeks and I will have to make another trip up to Boston in August.

My knee brace came today. It causes more pain and I feel just as unstable as before. Maybe Cam will help me put it on and I'll see if that makes a difference.

I talked to Dr. Shiple today. He wants to try a series of dextrose injections to try an alleviate some of the knee pain so that I can tolerate the PT exercises. Injections don't usually work well with me but as it is a new injection that I have never tried before I thought I'd give it a shot. I will receive 1 injection a week starting this Tuesday. I can receive up to 8 injections but may only need a couple depending on how much pain relief I get. Fingers crossed this works!

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Triple Digits!

The temperature has officially reached triple digits for the last 3 days. I usually try to lie outside and "tan"-which means burn- but haven't lasted more than 2 minutes before dripping and needing to drink a gallon of water. However, I must say I have much more color this summer than I have ever had and it's only July. YAY!

I don't have much to update on which is why I haven't posted in a couple of days. I had PT on Tuesday. Stim failed again but we did some other strengthening exercises for other parts of my body. We don't need them to go on vacation too! I am hoping to have some hip restrictions lifted soon so that I can start doing other exercises to tighten my quad. I still have NO hip pain which is fantastic and really satisfying. I definitely made the right decision to have the left PAO first and couldn't be more pleased with the results thus far. However, I'd love to hear that from my PAO surgeon himself. My post-op appointment is in 2 weeks and I will have another set of x-rays taken.

I e-mailed my scope surgeon to update him on my knee as my PAO surgeon is still away. He recommends I get an MRI to confirm there is no cartilage damage from the subluxations. If conservative treatment fails (PT and stabilizing brace) then he said that he performs an MPFL reconstruction. I am not even going to explain that right now because I don't have time in my busy upcoming schedule for knee surgery-I'd like to graduate from college before I am 60. Therefore, I am going to pretend it's not an option right now. However, my surgeon would like to see me for a proper evaluation so I will try to make an appointment with him while we are in Boston for my post-op. If that doesn't work we will travel back to Boston in August.

I have PT tomorrow. Should be fun! I love feeling like my thigh is being set on fire.

I will hopefully hear back tomorrow about whether or not I can schedule an appointment with my surgeon for our post-op visit. I am looking forward to my trip to Boston. I believe I am meeting up with 2 Hip Chicks who both had hip surgeries at Children's. That should be a lot of fun!

I'd like to report that Roo and Mick have learned how to turn the garden hose on and proceed to roll around in the mud puddle it creates. Apparently one time wasn't enough and they decided to do this 2 more times. Needless to say they won a free trip to the bath tub-their FAVORITE place ; )

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Happy Birthday America!

Happy 4th of July!

*Nothing new to report! My knee is still unstable and causing a lot of problems-subluxing more frequently! I will talk to Cam and Dr. Shiple on Tuesday to revise the plan, hopefully hear back from Erin, and maybe get in touch with my surgeon! Until then Happy Birthday USA

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Failure!

Today was my first day of PT and neuromuscular electrical stimulation (NMES). I am sure many of you have heard of electrical stimulation as a means of pain relief. NMES differs in that strong electrical impulses cause muscle spasms and contractions. It isn't the most comfortable forms of therapy/treatment as I recall. I had NMES for my ankle about 3 years ago and it was quite painful. This time the NMES was placed on my thigh to activate the quad muscles. Unfortunately it was unsuccessful. We tried 2 different machines and many levels of intensity. Machine number one caused severe burning and stinging pain (regardless of what intensity level) but didn't effect the muscles. It is very obvious when the therapy is working as the entire leg would twitch. Machine number two didn't have any effect at all. I could barely even feel a tingling sensation when the intensity level reached it's highest. We moved the pads around to different areas and had the same result everytime. Basically my leg muscles have shut down and have turned into mush. Cam jokingly said that I have the weakest quad muscles in the world. It's no wonder my knee is so out of whack! We are going to try again next week (I have 2 appointments) and if we are unable to activate the muscles then we will have to move on to plan B-whatever that may be.

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