"Birds make great sky-circles
of their freedom.
How do they learn it?
They fall, and falling,
they are given wings."

-Rumi (translated by Coleman Barks)

Monday, June 28, 2010

Update, Part I

It's only been a week, but as usual, I have a lot of information. I didn't want to try and squeeze it all into one big post- I find people are more apt to read if it's shorter and concise. I wanted to copy something Caryolynn from Cherry Hill. She is a therapist and you can find her website at www.livefullycounseling.com. She emailed me and said the following:

I'm particularly interested in helping women who have lost interest and pleasure in sex and working with their partners who navigate that journey with them. There are so many reasons a woman might avoid sex, it could stem from exhaustion, to relationship problems, to painful sex experiences, and whatever might fall in between. I enjoy helping these couples reconnect, strengthen their relationship and enjoy a fulfilling sex life!

I know you are all from across the world, so Caryolynn might not be the answer, but therapy could possibly be. I know I shouldn't be talking since I stopped going after two visits to someone near school, but I think it's important to do. I'm having difficulty opening up to anyone, so I know it's something I should work on and I urge you all to do the same. We have control over our life. Maybe not medically speaking, but everything else is ours for the taking. And don't you think life has taken too much from you already? It's time to make a positive change.

I'm exhausted, but I'll update tomorrow about all the new medical information I found out this week. Also on a personal note, I have just finished filming for a True Life episode for MTV. It's actually called True Life: I can't have sex, but it centers around me and two other women with similar medical conditions. It's set to premiere July 22nd at 10pm. I'm hoping it raises awareness for all of us, so check it out if you can.

Monday, June 14, 2010

Freedom

I want to begin by thanking my family for taking such good care of me through this recovery process- I say it repeatedly, but my strength comes from them. Thank you also to all my friends who have come visited me- some have come for almost every surgery I go through. It's important for me to realize that I'm not going through any of this alone, and most importantly that there are more levels to our friendships. Finally, a big thank you to all of you who have sent me warm inspirational emails before and after my surgery. Every time I get an email I remember that I'm not alone and what I'm doing is making a difference to some people.

Recovery is going really well. I'm in a great place and looking forward to the rest of the summer. My surgery was very successful- I did indeed have a big tear (bigger than my left hip) that was repaired, as well as a bone spur that was shaved down, and a tendon that was released. After the procedure, I woke up in the recovery room in a lot of pain, but it lessened once they were able to give me medication. Again, the Hospital for Special Surgery was wonderful and I continued to be impressed by them. It was a same day procedure, so I came home and have since been resting and improving. Things are moving along a lot faster than last summer. I was off pain medicine in two days and have been walking up stairs. It's been a little over a week, so I got my stitches out today and started walking without crutches. Now it's just a matter of strengthening my muscles once more. I'm starting physical therapy and planning on going three times a week and dedicating my summer to rehabilitating correctly.

I have an appointment in a week with my rheumatologist to go over my x-ray and bloodwork results. I'm anxious to see if they found anything. I'm also going to keep an eye on my pelvis, and might need an additional surgery to correct those tears a bit later on. I keep getting asked if the surgery has made my pain go away- no results yet. But it usually takes up to a year to finally see if it worked. Right now I'm not focusing on how my body feels- it still needs time to recover and regain its strength.

I haven't worked out in a long time. I miss the adrenaline and sweat and aches. It's frustrating sitting and waiting when all I want to do is go out and enjoy my remaining time before I begin my job. A big part of me is missing. I feel pretty vulnerable without it. And it doesn't help that I still need to be taken care of. But for now I'm going to focus on regaining my strength. I can't work out my lower body too much, so I'll compensate with my upper body. And I might not be able to do the summer activities that I want, but I will improvise. So take that, life.

Saturday, June 5, 2010

Learning to walk (again)

Yesterday was hip surgery, take two. This time on my right leg. I can't say I was thrilled going into it. I was not happy about losing another summer to sitting on the couch and not being able to do anything without assistance. I was not happy about having to handle the pain all over again. But at the end of the day, it really didn't matter what I felt. It was another tear and it needed to be fixed.

I spent the day before surgery playing tennis with a great friend. I could not stop smiling- I wasn't able to exercise for so long, and now to feel the sweat pour down my face, to be able to run, and to breathe... this was the missing part of me that I had forgotten. It was calming and it reminded me that it'll always be there. I have been pretty upset recently that I turned into this out-of-shape blob. Exercise and athletics mean so much to me. They are a chance for me to challenge myself and to feel alive. Most importantly, they were such a good distraction from the pain I was feeling.

After playing tennis, I calmed down significantly and was ready to mentally prepare for the next day. I had already gone through this before, so I knew what to expect and I knew I could handle it. Plus, another surgery meant I'd be getting matching scars on either hip. Imagine the stories I can tell of how I got them.

My parents and I woke up very early yesterday and headed to the Hospital for Special Surgery in NYC. The whole day was deja vous- I remembered so much of it from last summer. It's always eerie walking into a hospital holding crutches, walking just fine, but then leaving in a wheelchair.

Once we got there, it was the same drill as before. Yet again, the HSS was so well-run and organized, as well as kind and understanding. After a bit of paperwork in the front, I am taken back to my own room where I get dressed in the lovely paper gown and shorts, with the lovely blue shower cap. I have to go to the bathroom to take a pregnancy test (standard procedure for all females) and then I'm brought back in and an IV is started. The nurse asks me questions, as well as the physician's assistant, and the OR nurse, and I sign more paperwork. I also get visited by a nurse to wash my hip, a physical therapist (I'm already an expert at crutches, thank you very much), the anesthesiologist's assistant, the anesthesiologist, and of course, my surgeon. After this big party, I walk myself into the OR, get on the table, and the anesthesiologist begins. After I was sedated and asleep, he gave me a spinal epidural (big shot in my lower spine) in order to numb me from the waist down.

Next thing I knew, I was in the recovery room, disoriented and tired. I could not feel anything from the waist down, but slowly I got my feeling back. My mouth was very dry, so I started to drink some water and eat crackers. I was allowed to have one parent at a time, so each came in to hold my hand and keep me company. They are both wonderful and have been the biggest and greatest support system in my life. After I was up for a few minutes, I started to feel intense pain in my hip. I was given two shots in my IV and two pills. The pain stayed for awhile, but it was pretty easy to manage and soon started to wear off a bit. I wanted to get out of there as soon as possible, so once I could feel my legs and wiggle my toes I was allowed to leave. My dad went to go get the car, and the nurse wheeled me down in the wheelchair.

Now I'm home and going through the healing process. My surgeon told my parents that the tear in my right hip was even larger than my left hip. This also means I now have the two biggest hips he's operated on. Not only was the tear huge, but I had a bone spur that was pressing into my tendon. That was shaved down and my tendon was stretched. He also saw a lot of inflamed tissue because of the tear, but thankfully none around the joint, which means I did not have arthritis or anything of the sort. My surgeon also felt that the tear was so bad that it definitely could be causing all of my pelvic pain. As happy as this makes me, I still think there are more things we have to fix. But I am ecstatic that I am on the right step and that the tear was so significant. I knew this months ago and tried to convince that horrible hip doctor in Princeton. Upon examination, he told me I didn't have a tear and if I did, it would be small and not an issue. I had to beg for an MRI. You can bet I will be writing him a nice letter now that I just went through extensive surgery that he was adamant I would never need.

My pain right now is not bad at all. In fact, I'm doing much better than last year. I am able to slowly move on crutches, and don't need my parents to bend down and slowly push my leg forward. I just need them to help me bring my leg down from the couch or the bed and then put it back up once I go to the bathroom. The one thing different from last year is I'm having really bad back pain from where I was given the spinal epidural. There was a little bit of blood in the hospital, and now it just aches and I have a dull pain, which I was told should be expected. I'm combating this by icing it and my hip as much as possible.

I think that's all for now. I'm in good spirits and ready to finally get myself healthy. I'm so overwhelmed by all the warm wishes, phone calls, and flowers I have received. I am the luckiest patient to be surrounded by so many genuine people.