At the point of diagnosis, crutches became a permanent part of my life (they had been a stand-by for the previous six months, but now they weren't optional). Talk about a pain in the pits, these things can be lethal and no where near fashionable. However, since they ended up being a part of my wardrobe for nearly three years (yes, I said three followed by years), I learned how to dress them up a little bit. Decorate for holidays, get autographs, use them for purposes other than what they were intended for :) However, I digress. Appointments at Riley were happening on a monthly basis and my next appointment post-diagnosis was the day after my first day of seventh grade. Trust me, I wasn't ready for this appointment, it was far from routine.
We showed up at the clinic early to receive my orders for blood work and x-rays. Since I was on such high doses of anti-inflammatory medication, my blood counts had to be checked on a very frequent basis to make sure that my vital organs were still functioning properly. I felt like a human pin-cushion, especially on the days where a 10-vial draw was a necessity, but the tests were important and saved me more than once! I was also becoming a pro in the x-ray department...I knew exactly what views they needed, how many times it would take to get a clear picture, and how embarrassed I would become when they would ask my about my ovaries or if there was a chance of pregnancy.
When we finally met with Dr. Kling and his staff, they informed us that since I was such a rarity, treatment was a difficult path to prescribe. There were procedures that could be done to check the severity of the joint, but it required general anesthesia and potential surgical components. However, there was one option that stood out above the rest and would be the non-surgical option to gain some rotation within the hip. I wasn't a candidate for a replacement or other non-exploratory surgeries (like the one above) because I was still growing and for a second strike, the nature of my disease could actually eat the replacement joint. My option...an extended stay at Lifelines Childrens' Hospital in Indianapolis. I would receive specialized physical and occupational therapy, nursing care and constant monitoring. Doesn't that sound like a load of fun? My thoughts exactly! The day was Thursday, my reservation had been made for Monday morning.
I plan on dedicating an entire blog post to my time at Lifelines, but it ended up being a one-month stay in a place that was basically a nursing home for children. My life and the life of my family had been put on-hold. Everyone took turns staying with me, wiping my tears and being the face of courage when I was at my lowest point imaginable. I endured 12-14 hours of physical/occupational therapy each day. They had to create a traction unit out of my shoes in order to stretch my hip properly...I had to use it everyday and then sleep in one similar to it every night. I had to be placed in certain positions and strapped to bolsters for an hour at a time...I remember screaming at the top of my lungs due to the intense pain. It got to the point that no one was allowed to be in the room with me during "position time" because I would beg them to unhook me and not tell the nurses. I would eventually become calm, but at that time, nothing could compare to the pain. I was blessed with an abundance of cards, care packages, flowers and above else, love. I had friends that would come and visit and just climb in the bed with me while I was being iced down for my next round of therapy or lying in the traction device. I prayed every Friday,when the insurance had to re-approve my stay for another week, that they would deny me and kick me to the curb. Of course the insurance was phenomenal and they kept giving the high-sign for me to continue. Ugh! However, through the pain and the tears, this is the moment where I realized how different I truly was, how lucky I was to be surrounded by so much love. My hip may be rare and a celebrity on the medical conference circuit, but I had more to offer the world than a copy of my bone scan. This condition wouldn't define me, it would push me through to new levels that I never felt possible.
Wednesday, December 5, 2012
Monday, December 3, 2012
Part One of Unique Me
As I shared in the opening blog, I was created a bit differently than everyone else, in a way that showed me the world from a different perspective. For those that know me well, you are quite aware of the "special hip" and the journey that it took me on in my younger years. Some of this may be boring reading to you, but you may find some interesting tidbits. For others, this "specialness" played a significant role in my life and still does today. I'll admit that some of these pieces are difficult to recall and this blog would be multiple pages if I did it all at once, so I will break it up a bit. So here's the scoop and how this crazy journey began:
In February 1995, just shy of my twelfth birthday, I finished my tap class on a Thursday evening, but this time something was much different. I had intense pain in my right leg that didn't seem to dissipate with rest, ice or any other typical relieving agent. I attempted my next dance class and by the time it was over, I had to be assisted to the vehicle because my leg really did not want to cooperate. As a nearly eight-year dancer, I was no stranger to pulled or strained muscles, but the pain I was feeling was from from ordinary. Little did I know that this night and this pain would help to carve the path for the remainder of my life.
I limped around on Friday morning and my family decided that a trip to the doctor was necessary to make sure I hadn't caused any damage. Xrays appeared fine, my range of motion was limited (but nothing more than what you would see with a traditional sprain) and everything seemed to be in working order. I was told to stay off of it for the weekend, take stronger anti-inflammatory meds and take at least a week off from dance. Ugh...that was the worst possible thing he could have told me, take a week off from dance, we'll see about that doctor!! Well the weekend of rest turned into the weekend of terror...the pain intensified, walking short distances proved to be next to impossible, and I knew that this was WAY more than a sprain. Monday ended up being a blur...my family doctor started running typical range of motion tests and I had lost several degrees of rotation in a 48 hour period, enough to warrant a special appointment with the orthopedic surgeon. They rushed me for more xrays, took multiple vials of my blood and sat me in a cold and sterile room to wait for the doctor. He had me walk down hallways, measured the lengths of my legs, moved me around like I should be made of rubber. All I could see was him shrugging his shoulders and saying that I would need a full-body bone scan. He asked my Mom to join him in the hallway to set-up my appointment. I didn't learn until later (much later) that when they stepped into the hallway, my Mom was informed that they suspected a rare form of bone cancer and that my prognosis would be grim, most only survive six months. My mother is ONE STRONG WOMAN, because she was nothing but positivity when she came back in the room for the doctor to explain the procedure. I didn't have a clue that they thought my life was hanging in the balance.
A few days later, I show up with most of my family in tow for a full-body nuclear bone scan. That's right, for at least a day, I was glowing! I didn't know that my Mom had arranged with a doctor at our clinic to have my tests read immediately, due to the fear of what they may tell us. Originally they said it could take up to two weeks to hear anything, we heard in less than two hours. When the nurse came in to tell us that the doctor would be there shortly, she happily announced that "it isn't cancer". My Mom and Grandma burst into tears and I am just sitting there, stunned. What do you mean "it isn't cancer, I thought they were looking for broken bones"? Then they shared what the orthopedic surgeon had told them and my heart sunk into my stomach, even though I was elated that I didn't have a six month window to live my life. Basically, the test showed nothing and we were back at square one with a leg throbbing with mysterious pain. The next few weeks were filled with doctor appointments, the evening of my twelfth birthday spent in the Ball Hospital ER and being tagged as some sort of medical mystery. After numerous doctors, numerous tests (including a MRI) and numerous theories, it was decided that I would be sent to specialists at Riley Hospital in Indianapolis.
Riley was nicely decorated as we made our way to "Clinic C", which would end up being my home away from home. Multiple doctors came in to check me out, look at my xrays and talk to me and my family...I felt like a celebrity. I was slightly ticked-off when they decided that I needed to spend the night in order to allow multiple tests to be ran and to enjoy a little bit of physical therapy. Once again, the tests and xrays came back clear and everyone was stunned. One month later, I returned to the "C" and then had the opportunity to meet with Dr. Thomas Kling, an orthopedic surgeon that looked like a skinny version of Santa Claus. My new xrays and a new MRI finally had an answer to reveal (6 months later)...the cartilage had disappeared in my right hip joint and only left a thin film that had kept it rubbing bone on bone. My previous xrays had "phantom cartilage", which was basically fluid that mimicked the look of a normal joint. I was officially diagnosed with Idiopathic Juvenile Chondrolysis.
Idiopathic Juvenile Chondrolysis...say that three times fast. It is a rare joint disorder with no known cause that typically effects African-American females in their twenties. I was only the second case seen by Dr. Kling, the first for many others, and I happened to be the rarest. My crutches now became permanent fixtures (I was told to become non-weight baring immediately), I had to sleep in a special traction contraption and my bedroom had to be moved to the dining room of our home because I was no longer able to maneuver the stairs to my 2nd floor bedroom. This tap-dancing, tennis playing, pre-teen was now a research study and medical lab rat. Just when I thought that this was the worst of it, the saga continued...
In February 1995, just shy of my twelfth birthday, I finished my tap class on a Thursday evening, but this time something was much different. I had intense pain in my right leg that didn't seem to dissipate with rest, ice or any other typical relieving agent. I attempted my next dance class and by the time it was over, I had to be assisted to the vehicle because my leg really did not want to cooperate. As a nearly eight-year dancer, I was no stranger to pulled or strained muscles, but the pain I was feeling was from from ordinary. Little did I know that this night and this pain would help to carve the path for the remainder of my life.
I limped around on Friday morning and my family decided that a trip to the doctor was necessary to make sure I hadn't caused any damage. Xrays appeared fine, my range of motion was limited (but nothing more than what you would see with a traditional sprain) and everything seemed to be in working order. I was told to stay off of it for the weekend, take stronger anti-inflammatory meds and take at least a week off from dance. Ugh...that was the worst possible thing he could have told me, take a week off from dance, we'll see about that doctor!! Well the weekend of rest turned into the weekend of terror...the pain intensified, walking short distances proved to be next to impossible, and I knew that this was WAY more than a sprain. Monday ended up being a blur...my family doctor started running typical range of motion tests and I had lost several degrees of rotation in a 48 hour period, enough to warrant a special appointment with the orthopedic surgeon. They rushed me for more xrays, took multiple vials of my blood and sat me in a cold and sterile room to wait for the doctor. He had me walk down hallways, measured the lengths of my legs, moved me around like I should be made of rubber. All I could see was him shrugging his shoulders and saying that I would need a full-body bone scan. He asked my Mom to join him in the hallway to set-up my appointment. I didn't learn until later (much later) that when they stepped into the hallway, my Mom was informed that they suspected a rare form of bone cancer and that my prognosis would be grim, most only survive six months. My mother is ONE STRONG WOMAN, because she was nothing but positivity when she came back in the room for the doctor to explain the procedure. I didn't have a clue that they thought my life was hanging in the balance.
A few days later, I show up with most of my family in tow for a full-body nuclear bone scan. That's right, for at least a day, I was glowing! I didn't know that my Mom had arranged with a doctor at our clinic to have my tests read immediately, due to the fear of what they may tell us. Originally they said it could take up to two weeks to hear anything, we heard in less than two hours. When the nurse came in to tell us that the doctor would be there shortly, she happily announced that "it isn't cancer". My Mom and Grandma burst into tears and I am just sitting there, stunned. What do you mean "it isn't cancer, I thought they were looking for broken bones"? Then they shared what the orthopedic surgeon had told them and my heart sunk into my stomach, even though I was elated that I didn't have a six month window to live my life. Basically, the test showed nothing and we were back at square one with a leg throbbing with mysterious pain. The next few weeks were filled with doctor appointments, the evening of my twelfth birthday spent in the Ball Hospital ER and being tagged as some sort of medical mystery. After numerous doctors, numerous tests (including a MRI) and numerous theories, it was decided that I would be sent to specialists at Riley Hospital in Indianapolis.
Riley was nicely decorated as we made our way to "Clinic C", which would end up being my home away from home. Multiple doctors came in to check me out, look at my xrays and talk to me and my family...I felt like a celebrity. I was slightly ticked-off when they decided that I needed to spend the night in order to allow multiple tests to be ran and to enjoy a little bit of physical therapy. Once again, the tests and xrays came back clear and everyone was stunned. One month later, I returned to the "C" and then had the opportunity to meet with Dr. Thomas Kling, an orthopedic surgeon that looked like a skinny version of Santa Claus. My new xrays and a new MRI finally had an answer to reveal (6 months later)...the cartilage had disappeared in my right hip joint and only left a thin film that had kept it rubbing bone on bone. My previous xrays had "phantom cartilage", which was basically fluid that mimicked the look of a normal joint. I was officially diagnosed with Idiopathic Juvenile Chondrolysis.
Idiopathic Juvenile Chondrolysis...say that three times fast. It is a rare joint disorder with no known cause that typically effects African-American females in their twenties. I was only the second case seen by Dr. Kling, the first for many others, and I happened to be the rarest. My crutches now became permanent fixtures (I was told to become non-weight baring immediately), I had to sleep in a special traction contraption and my bedroom had to be moved to the dining room of our home because I was no longer able to maneuver the stairs to my 2nd floor bedroom. This tap-dancing, tennis playing, pre-teen was now a research study and medical lab rat. Just when I thought that this was the worst of it, the saga continued...
Saturday, December 1, 2012
Sexy...it's a state of mind!
Good morning from the confines of bed rest...not exactly the way I had planned to spend my weekend, but figured I had better listen unless I wanted to spend more than a few days completely out of commission. However, sickness is not going to be the topic at-hand today (sigh of relief, I know), we're going to touch on a far more attractive subject...sexiness :) I'll admit that the song "I'm Sexy and I Know It" is running around my head like a hamster on a wheel, so pardon any references to the lyrics.
I don't think any of you reading this need the traditional definition for "sexy", and much like myself, you probably equate it with the attractiveness of a person, an attribute or an action. Sexy legs, sexy mama, the way she twirls her hair is so sexy...you know what I mean! However, there is a whole layer of sexiness that we often don't consider; self-confidence, loving yourself and having that sexy state of mind. Sexy is WAY more than a perfect body, gorgeous legs or a cutesy habit. YOU determine whether you are sexy or not, yes I said YOU! Society has tried to define this term with superficial meaning, but it really inhabits so much more.
During a random conversation with a friend, we were discussing the qualities he was looking for in a potential mate. After reviewing the list, I made a comment that there weren't any physical attributes mentioned and wondered if those were something he simply kept to himself or was potentially afraid he would offend me with statements such as "cute rear" or "killer abs". After continued conversation, he enlightened me to the fact that physical attraction is necessary, but his list of qualities far outweighed the need for someone that fit the societal definition of "sexy". "Nicole, sexy is a state of mind, not a physical attribute". Ta-da, light bulb on, smack back to reality...there we have it, sexy IS a state of mind!
For the majority of my life, I've never fit any type of traditional mold that would qualify me as sexy. Society has attempted to teach me that being overweight, slightly nerdy and a fairly free-spirit makes me a card-carrying member of the loser club...oh think again! I've been blessed to grow-up in a family that embraces beauty from within, compliments uniqueness and NEVER made me feel anything but beautiful! Without really being conscience of it, I had embraced the sexy state of mind! I may be overweight and different, but I AM SEXY (and so are you, by the way). I may not have the body of a model, I like food WAY too much for that, but I still have features that I find to be gorgeous. Society can be such a hateful entity that it makes us feel wrong if we don't live up to its standards. Trust me, you're more in the right if you throw it's standards to the curb and just live your life!
By now, you may be questioning me and thinking that the "sexy state of mind" is a bunch of bologna, but let me share this story with you and see if it changes your mind, even a little bit. About four years ago, I was in New Orleans for a work-related conference that crammed about a month's worth of material into a two-day event, needless to say we were all frazzled. On the second day of break-out sessions, I woke up early enough to have a bit of me time before the events of the day were to begin, which was a nice way to clear my head and get mentally prepared. Before heading to the session, I happened to glance in the full-length mirror before exiting the room and smiled at myself...nothing especially different about me on that day, but seeing myself smile made a huge difference. I thought I looked amazing and that was all that mattered. There was an extra pep in my step and confidence that I couldn't hide. I took my place in the hotel conference room with other colleagues from all over the United States and began to chat with one of my local cohorts as I was getting my notebook prepared when I felt a tap on my shoulder. I turned to see a woman behind me that had been in most of my break-out sessions and was far from prepared to hear what she was about to say. "Ma'am, I don't mean to sound awkward, but you are strikingly beautiful...your smile radiates and you have captivating confidence." I was speechless! I mustered a "thank you, that was so kind" and couldn't wipe the smile off of my face for the rest of the trip. I had embraced a love for myself and someone else noticed...how cool is that!
So here is your challenge for the day: go find a mirror and look in it. Not a quick glance, but study yourself. NO NEGATIVE COMMENTS!!! Do you have a wrinkle? So what, it's from laughing too much. Oh your boobs have sagged? Maybe it's because they sustained life for your children. You aren't too sure where the six-pack is? It just means that there is more of you to cuddle. Don't get caught up in the societal framework of sexy, get caught up in your own unique sexy! Embrace you, all of you, and let the world see that "you're sexy and you know it"!!
I don't think any of you reading this need the traditional definition for "sexy", and much like myself, you probably equate it with the attractiveness of a person, an attribute or an action. Sexy legs, sexy mama, the way she twirls her hair is so sexy...you know what I mean! However, there is a whole layer of sexiness that we often don't consider; self-confidence, loving yourself and having that sexy state of mind. Sexy is WAY more than a perfect body, gorgeous legs or a cutesy habit. YOU determine whether you are sexy or not, yes I said YOU! Society has tried to define this term with superficial meaning, but it really inhabits so much more.
During a random conversation with a friend, we were discussing the qualities he was looking for in a potential mate. After reviewing the list, I made a comment that there weren't any physical attributes mentioned and wondered if those were something he simply kept to himself or was potentially afraid he would offend me with statements such as "cute rear" or "killer abs". After continued conversation, he enlightened me to the fact that physical attraction is necessary, but his list of qualities far outweighed the need for someone that fit the societal definition of "sexy". "Nicole, sexy is a state of mind, not a physical attribute". Ta-da, light bulb on, smack back to reality...there we have it, sexy IS a state of mind!
For the majority of my life, I've never fit any type of traditional mold that would qualify me as sexy. Society has attempted to teach me that being overweight, slightly nerdy and a fairly free-spirit makes me a card-carrying member of the loser club...oh think again! I've been blessed to grow-up in a family that embraces beauty from within, compliments uniqueness and NEVER made me feel anything but beautiful! Without really being conscience of it, I had embraced the sexy state of mind! I may be overweight and different, but I AM SEXY (and so are you, by the way). I may not have the body of a model, I like food WAY too much for that, but I still have features that I find to be gorgeous. Society can be such a hateful entity that it makes us feel wrong if we don't live up to its standards. Trust me, you're more in the right if you throw it's standards to the curb and just live your life!
By now, you may be questioning me and thinking that the "sexy state of mind" is a bunch of bologna, but let me share this story with you and see if it changes your mind, even a little bit. About four years ago, I was in New Orleans for a work-related conference that crammed about a month's worth of material into a two-day event, needless to say we were all frazzled. On the second day of break-out sessions, I woke up early enough to have a bit of me time before the events of the day were to begin, which was a nice way to clear my head and get mentally prepared. Before heading to the session, I happened to glance in the full-length mirror before exiting the room and smiled at myself...nothing especially different about me on that day, but seeing myself smile made a huge difference. I thought I looked amazing and that was all that mattered. There was an extra pep in my step and confidence that I couldn't hide. I took my place in the hotel conference room with other colleagues from all over the United States and began to chat with one of my local cohorts as I was getting my notebook prepared when I felt a tap on my shoulder. I turned to see a woman behind me that had been in most of my break-out sessions and was far from prepared to hear what she was about to say. "Ma'am, I don't mean to sound awkward, but you are strikingly beautiful...your smile radiates and you have captivating confidence." I was speechless! I mustered a "thank you, that was so kind" and couldn't wipe the smile off of my face for the rest of the trip. I had embraced a love for myself and someone else noticed...how cool is that!
So here is your challenge for the day: go find a mirror and look in it. Not a quick glance, but study yourself. NO NEGATIVE COMMENTS!!! Do you have a wrinkle? So what, it's from laughing too much. Oh your boobs have sagged? Maybe it's because they sustained life for your children. You aren't too sure where the six-pack is? It just means that there is more of you to cuddle. Don't get caught up in the societal framework of sexy, get caught up in your own unique sexy! Embrace you, all of you, and let the world see that "you're sexy and you know it"!!
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