My Story

MY STORY

My full story goes all the way back until around January 2013, but here is the breakdown of my story.  About a month after my college graduation in May 2013, I moved down to Orlando, FL and began working for the Disney College Program. I worked as a “Pirate Master” and I did pirate makeovers for guests in the Magic Kingdom.  

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Working for Disney was my dream and I was having the absolute time of my life while I worked there! Within the 3-4 months of working in my position, I gained a really supportive pirate family, and they were truly there for me through thick and thin!

**I have had symptoms of arthritis my entire life: it’s been in my knees, elbows, fingers, etc.  **

Even before my big move to Florida, by the end of my senior year at Rutgers, my symptoms became so severe to the point where my right arm and elbow were so stiff and I was in so much pain that my arm locked itself in a 90 degree angle to the point that I then had to wear a sling for support.

But I was graduating from college, and even though my symptoms seemed to dissipate, I went on with my life and did my best to push through the pain.

In reality though, I was experiencing some seriously severe symptoms. Not only was I experiencing severe joint pain, but I also started getting these weird mild fevers that would make me incredibly disoriented and dizzy, to the point that if I wasn’t careful I would walk into doors, doorways and walls. Basically, any barriers around me.

Still, there was so much on the horizon for me. A week after graduation (at the end of May) as a gift, my grandparents took me on a week long trip to London, England. Then 3 days after my trip abroad, I changed over my packed college bags and readied myself to move to Florida.

Like I said, Disney was my dream and I wasn’t about to give up on it because I wasn’t feeling my best.

A REALLY long story short (as much as I can possibly try to condense it), I was diagnosed with lupus in the end of August and I was later hospitalized on September 6th when my rheumatologist sent me to see a vascular surgeon, who found multiple blood clots in the arteries in my right wrist.

I was admitted to the Orlando Regional Medical Center on that very morning, and as soon as I called my parents to tell them what was happening, my mom said “I’m on my way”. So she hopped on a plane and was with me that very same night (*along with one of my best friends from back home who actually drove me to the hospital that morning and made sure I was FULLY taken care of- you da best Alex*).

In that first hospital in Orlando, I had between 5-6 surgeries over a period of 5-6 days. Then around 4 am on September 11th I was emergency transported via ambulance (with my mom, thankfully) to Shands Hospital at the University of Florida, which was about an hour and a half away from Orlando in Gainesville. My dad eventually flew down to meet us and we were also later joined by my younger brother, Matt as well…and it turned out to be the biggest surprise I’ve ever gotten in my entire life,ever!

Unfortunately, my right arm was amputated, below the elbow on September 18,2013.  We were told that they would not be able to save my arm a few days earlier, so we had time to prepare for the “main event”.  

Anyway, the reason why they were unable to save my arm was because of an allergic reaction to a common blood thinner known as heparin.  My body reacted by having what’s known as a “HIT” (heparin induced thrombo… Something something– look it up, wikipedia could probably explain it better than I could), but just know that it was an extremely rare reaction… and it was a bad reaction.  I eventually lost total function and feeling in my right hand/ wrist. Even though I was HEAVILY  medicated, I slowly saw my arm deteriorate before my eyes.

Still, when the news came that my arm would be amputated, I wasn’t afraid, i was happy that I wasn’t going to be in pain anymore.

Ultimately, I was in 2 Florida hospitals and had a total of 10 surgeries over a period of 30 days.

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I am now living back home in New Jersey with my parents and just trying to readjust to life as a lefty (yes, I was a righty, too).  But for now, I’m just trying to take my experience for what it was. I see my life as a brand new opportunity and the only thing I can do for myself now is.. well, “Just Keep Swimming!”

The good news is that the doctors say that this occurrence will most likely never happen again.  I will always have lupus, I will obviously always be an amputee, but I hopefully will not develop anymore blood clots! Still what remains a mystery is how they developed in the first place. Even though I was diagnosed with lupus just before everything happened, what I need people to know is that I did NOT lose my arm from lupus. It was my allergic reaction to heparin that caused that mess …

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What I aim to do with this blog is to update my friends and family with both what is currently happening in my life, and maybe to include stories from the hospital that I have yet to share.  My dad is VERY eager about writing a book about my/our story, he may have even started writing a little bit.. And I also may or may not have an outline of my own in the works too.

Thank you for taking the time to read my crazy story!! I know, I’ve included a whole lot of details, some a little more gory than others. But I’m here to share my story and I want people to understand that in the end, I know that I am going to be okay.

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3 thoughts on “My Story

  1. Wilma Dannenbaum

    Melanie,
    You are incredible. We admire your strength and courage so much. You write so beautifully that definitely a book should be in your future. Your explanation of your experience thus far is
    unbelievable. We wish you the very best recovery. You are an amazing brave young woman!! and you look great!!
    xoxo
    Wilma and Richard

  2. WW, Wow, what a rough road to go down with your lupus. I will be following your journey ahead with interest. What you have to share is a seldom-told story that many need to hear. Keep your resilience and sense of excitement about facing the stuff lupus brings across your path. Great start to your blog! LA

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