Please forgive me for taking weeks upon weeks to write the other half of my recovery story... Although this is the second part of my series, it does not entirely cover how I was cured from my battle with Avascular Necrosis; instead I went into detail of how the disease affected me. I realized as I was writing this second part that living with Avascular Necrosis is a much different story than me recovering from a bilateral hip replacement. I mean, the Avascular Necrosis was the reason I got the replacements in the first place but I wanted to really dig deep with the memories I had prior to my surgery and writing it all in one essay would be somewhat ridiculous. With that said this part covers what may had been the most painful time in my life; but much like my ulcerative colitis, I was only strengthened by it and God blessed me with such an incredible person to love. In the next and final part, I will share my operation and full recovery and a very happy ending.. I apologize again for the delay!
During my Ulcerative Colitis recovery process, I
began exercising again and became much more fascinated by food and eating for
health. And this is a bit off topic, but I joined a dating site in July 2011
during the time of my recovery. To be honest, I did it more out of curiosity
than any hope that I would successfully meet my future husband. Let me tell
you, I came across the most unusual crowd of people and often saw people I knew
from church; that was weirder for me than the people I didn’t know! A couple
months passed by and there was no success so I decided to disable (not delete)
my account and decided to focus my time on my upcoming semester of school. As
time passed, I began feeling a lot better and got a job at the clothing store Zara and I restarted my second semester
of college that fall. I wasn’t very enthusiastic about returning to school but
I was excited to join a ballet class. I thought to myself, “Get credits for
dancing? Sign me up!” and I also took ballet when I was younger so that made it
more interesting for me. The reason I mention this because exercising regularly
and the addition of ballet classes twice a week, helped me to notice the
initial stiffness that starting occurring in both my hips. I noticed a
difference in my range of motion in late November/early December and at the
time I thought it was just muscle soreness from a previous exercise and so I
shrugged it off.
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| (my husband is going to kill me...) This was his default picture on Ok! Cupid; he was in gymnastics in college. |
To make a long story short, he messaged me back and
we even exchanged numbers and began texting nonstop. He was a recent college
graduate, with an interesting job and was really cute! I liked texting him
because he was funny, smart and said old fashioned words like “gal” and
“flick.” The week before we met in person the stiffness in my hips and knees
became more frequent, especially after a long day of classes and then work
directly after school. I even told my ballet teacher what I was experiencing,
and she told me that it sounded like a bone disease and that I should seek
medical attention. Due to the holiday season I was working longer hours and one
Saturday night I had a very difficult time walking to my car. My knees ached
and my hips were uncomfortably stiff which caused me to walk with a limp. That
Sunday morning I asked my parents if they could take me to the ER. I didn’t
want to take any chances since I had a history of Ulcerative Colitis. Surprisingly
I felt calm and collected as I waited in the ER, and when the nurse came in and
took my vitals and then the resident on call. She inspected my legs and asked
questions. Because of my regular exercising, she said I might have developed a
sports related injury and to just take it easy, take some Tylenol and to use a
heating pad on my hips and knees. The next week I was still experienced pain in
my hips but “took it easy” and used heating pads and took long hot baths after
each shift.
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| The day I met Michael... |
I met the young man I was texting that Sunday
afternoon and we spent the day walking around New Brunswick, getting coffee,
watching the tail end of the Nutcracker at the State Theater on a screen and
then got plantain chips and hummus at a restaurant. I barely talked and mostly
smiled. He talked a lot. We walked to our cars and he told me he wanted to take
me on a real date. I agreed and we parted ways until January. When we began seeing each other more
frequently, we spent lots of time together. At first my parents were skeptical
because 1. I met him online and they didn’t know where the heck he came from.
2. I had never dated anyone. 3. They weren’t sure he was fully committed to
Christ. But once he came over for dinner for the first time, they were actually
very impressed by him. That Monday he came over again-- then Tuesday,
Wednesday, Thursday and Friday! That Sunday he went to church with us and then
on Thursday he asked me to be his girlfriend. Although we didn't make it
official until that Friday when he asked my parents for permission and the rest
is history…
By now the pain and stiffness in my knees and hips
had gotten worse. I began walking around with a limp. My mom found an
orthopedic doctor in our area and I got an x-ray but it showed nothing. I began
explaining my pain and what I was feeling to my doctor and he wrote me a script
for an MRI for both hips. A few days before I got the MRI, Michael and I
visited New York City on a cold wintery day. We walked across the High Line
Bridge, ate dinner at Souen and saw Traces. The night was perfect but that
didn’t stop my hips from screaming at me and I tried so desperately to pretend
that I was okay for my then boyfriend. A few days later I got the MRI and as we
waited for the results, I continued going to work, school and spent lots of
time with my boyfriend. I started to experience dizzy spells and felt faint
whenever I spent too much time on my feet.
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| my new best friends |
After viewing my MRI results, my doctor diagnosed me
with Avascular Necrosis* and I had no idea what that was. He explained that it
was a bone disease caused by Steroids, Alcoholism and Sickle Cell Anemia. It
was very possible that I developed it from being severely underweight and going
on steroids to treat my Ulcerative Colitis while I was in the hospital but the
jury is still out. Unfortunately for me my doctor at the time had no experience
with Avascular Necrosis and mistreated my diagnosis; he was older and most of
his patients were senior citizens. I will give him credit for giving me
crutches and prescribed me to see a physical therapist three times a week for a
month. His goal was to “fix my walk” because he actually told me that I walked
like an old woman. After much going back and forth, I made the decision to drop
out of college and pursue a culinary education. My parents also insisted I quit
my job because of my condition and I began my therapy. The PT office consisted
of older clients who were recovering from joint replacement surgeries and I
felt very out of place. Looking back the exercises my therapist had me do were
for someone who already had surgery and while it helped straighten my walk, it
was not the medical attention I needed at the time.
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| Whole Foods takeout, kombuchas, kale chips were just a few of the essentials for our Car Picnics. |
During this difficult time Michael and I spent a lot
of time at my house and going on “car picnics.” Literally a picnic in the back
of his car! Anything that didn’t require lots of walking or standing became a
safe date for us. I believe that God provided me with trust to open up to this
man. I felt safe with Michael and even when I was super dizzy and could barely
move, he always treated me with kindness and never let me feel like a
burden. As much as I hated feeling so
limited, I often question how our relationship with each other and Christ
would’ve grown without this period of suffering. We loved each other and after
dating for three months we knew we were going to get married. In the beginning
of our relationship Michael had told me he was a part of a rotational program
and would eventually have to go back to Pittsburgh for five months. In April
Michael moved back to Pittsburgh and we endured a long distance relationship; I
also attended an open house held at Natural
Gourmet Institute in New York City with my parents, crutches and all, eager
to enroll in their 5 ½ month program that upcoming July 2012.
 |
| our relationship hasn't changed... |
I agreed with both my parents and Michael that I
would only attend school that summer if I showed improvement after my second
round of physical therapy. By my doctors standards I was looking much better
and had been walking straighter. I sent my application in to the Natural Gourmet Institute that summer
and was accepted and set to start that July. I moved in with Grandmother Margie
who lives in the Bronx and used the bus that took me directly into 23rd
street, just two blocks from where I needed to be. The first couple of weeks of
school were about getting familiar with our appliances and the basic cooking
classes. Because the school was going through renovations we were given three
and a half weeks vacation and I got to go back home. I remember being so excited
because it was the first time I’d been away from my parents for so long, and I
was feeling homesick! During this time Michael was still in Pittsburgh and had
been pushing to be placed in New Jersey for his next rotation. I prayed that he
would be closer and to cope we spent the evening’s skyping.
Once my vacation was up, I was back in the Bronx and
back in school. The classes were wonderful! I never knew I would find myself
happy to go to school and I finally felt like I was in the right place. While I
was walking to school from the bus one morning, Michael called me and told me
he wasn’t going to be placed in New Jersey. For a split second I felt my heart
sink! But then he continued by saying, he was going to be placed in New York
City! It ended up working out better for us because I was going to school in
the city and he could easily commute from my grandmother’s house via bus and
train. And he did. Things were going smoothly and after school I would tell
Michael all about what I learned in school.
Even though I was happy, the pain in my hips had
increased once again and this time it was sharp. One day in our stock class, I
started to feel very faint and needed to sit down. My instructor gave me lemon
water, which temporarily did the trick. From that day forward I couldn’t stand
for long periods and the commute was taking a toll on my body. I felt
paralyzed. Michael urged me to use my crutches again and to tell the school
about my condition. I told the school’s supervisor and gave her a doctor’s
note. She told me to take it easy and sit down and take breaks whenever
necessary. Because the pain seemed to
worsen Michael and I began researching more and more about the disease. We were
frustrated and determined. We finally came across a doctor in Boston who
specializes in Avascular Necrosis and does a stem cell procedure that extracts
the patient’s stem cells and injects them into the diseased area promoting bone
growth. Michael and I emailed his office and they told us I needed to send in
my x-rays and MRI results.
During Thanksgiving time, I had an appointment with
my orthopedic doctor and I told Michael and my parents that it would be my last
visit with him. Prior to the visit I had asked for my MRI’s and x-rays because
I wanted a second opinion. Within a few weeks of sending my results, the Boston
doctor’s secretary called me and scheduled when he would call me for a phone
consultation. After school I stopped at a nearby Starbucks and waited for
Michael so he could be with me for the consultation. I put my dad on the other
line and we both listened in on what the doctor had to say. It was very
discouraging news. The doctor informed me that I had stage V Avascular Necrosis
in my hips and that they were on the verge of collapsing. He said that my
condition was far too severe for his stem cell procedure and that I would
eventually need an operation.
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| Despite all the pain, I managed to push through culinary school and it is still a huge accomplishment for me! |
A couple weeks after hearing this somewhat
frightening news, I graduated from culinary school and went back home. Michael
came across a doctor in Newark who specialized in a procedure where he took a
piece of healthy bone from the patient’s shin and then shoves it into place
with the diseased femur. We were able to get an appointment scheduled pretty
quickly and again we received the same news from this doctor as the one from
Boston. He told us that my condition was worsening and a total hip replacement
in my left and then eventually my right hip was my only option. He strongly
urged me to seek an Orthopedic surgeon and said the disease would cause severe
arthritis which would potentially cripple me. I left his office feeling
terrified but relieved all at the same time. I felt for the first time that I
had answers that would grant me with lasting and beneficial results.
I will close this part of my story by saying this
experience has taught me that sometimes I’ll need a second or third opinion; and
when it comes to specific diseases such as Avascular Necrosis, always seek a
doctor who specializes in that disease and be an advocate for my own health. In
my opinion a good doctor will be honest with me and point me in the proper
direction that will improve my quality of life rather than shooing me away and
giving me temporary solutions. In my next post, I’ll finally end this series with the conclusion of my recovery story;
thank you for all your patience!
*Avascular necrosis (AVN), also called osteonecrosis, aseptic necrosis, or ischemic bone necrosis, is a condition that occurs when there is loss of blood to the bone. Because bone is living tissue that requires blood, an interruption to the blood supply causes bone to die. If not stopped, this process eventually causes the bone to collapse. (source: WebMD)
-Jessica
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