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delrae's story - the journey to a diagnosis (part one)

delrae's story - the journey to a diagnosis (part one)

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Hello friends. If you’re new around here, hey 👋, if not, it’s so nice to have you here. I don’t talk about my story often. If you know me, you know I try to air on the side of positivity, so sharing how I got started is something I usually steer away from because, well, it isn’t positive.

In 2014 I was just your average 21 year old, making mistakes and trying to make it through college. I was always a rule-following human though, so the mistakes were more in the love department. I was in college at ASU, originally for accounting, but after being immersed in a trauma center emergency room, I swapped over to a pre-med degree. I worked my way into management, and fell in love with the atmosphere. It sparked my desire to be a trauma surgeon and set me on what I thought would be my forever.

Suddenly, after 5 years at the hospital, mandate was put in place for the flu shot. I had not had a flu shot since I was a child. It seems like once you get the poke, you get sick. (I can hear the experts saying it isn't true, but we all know). Sticking to my nature of rule follower, I complied. But then, something happened. It didn't hit me right away. I woke up the next morning and rolled out of bed - probably at some unreasonable hour like 1 or 2 pm - not sure what to make of this feeling I had. Down the left side of my body I felt a tingly sensation. Trying to make sense of this interesting feeling, I decided I slept wrong and headed back into work. As the night progressed, the numbness, or tingly feeling proceeded to move to my face. 

I was joking around with my co-workers asking if anyone else had experienced anything similar. To no avail, I was the only one experiencing this. I let this go on for a few days - numbness in my entire left side from the tip of my head, to the toes on my feet. Finally by day 3, I was actually worried and consulted a physician that I deeply respected in the ED. He suggested a diagnosis through our conversation, but no formal tests had been done, so I decided to seek a neurologist for assistance. 

Now, medical settings didn't historically make me nervous. I mean, I had been in a trauma emergency for 5 years, and seen the library of gross and gore. But this, this was different. The results of the MRI could change my life. They would change my life, I just didn't know the level of impact. As I headed back to the changing room, a simple stall with only a curtain between you and the outside world, I kept my emotions in. The MRI tech tells me to remove anything with metal in it from the waist up. Now, this is when I started to get nervous. What about the buttons on my pants... he reassured me it was fine, but I was sweating thinking about the magnetic potential of this machine I was about to enter. After I changed, I placed all my belongings in a locker and headed to what I hoped was some answers. 

I climbed aboard this vertical, cold, less than a bed and was conveyered inside this machine. Thumping, knocking, buzzing and clicking noises zoomed around my head. Lights of red, green and yellow danced as the machine moved around me. I lay there in this orchestra of chaos, I tried to breath and focus on steadying eye movements so we wouldn't have to retake these images. After 3 hours of varying scans, and a visit to the neurologist. Nothing. I was left with no answers. 

The neurologist asked me to go back again and get additional images. Still inconclusive. Again, he asks me to get new scans but with contrast this time. After weeks of back and forth, hours of MRIs, dealing with the preparation and after math of contrast, I knew my fate. I finally had my answers.

The conclusion was that the lesions on my brain were new, and luckily they didn't progress to my spinal cord. On that note, I was handed a packet for people who had been diagnosed with Multiple Sclerosis. It was pages, and brochures, and cards, and websites for medications for MS. For me, the diagnosis wasn't incredibly scary. I grew up with a father that had Multiple Sclerosis and managed it with medication weekly. Although he and I have very different symptoms and struggles most days, I saw what kind of experience that was for him. Honestly, it's not one I wanted. 

That night I went home to my apartment and cried. Why me? What did I do to deserve this, to live with this struggle? All of the visions of what I thought my future would hold flashed before my eyes. I didn't want to have kids anymore because I didn't want to pass it down, I couldn't proceed with the career I had fallen in love with, I didn't know if I would end up in a wheel chair, or be incapable of speaking. After saying them all aloud, I made a decision. DelRae, I said to myself, you have one day to be the victim. One day to feel sorry for yourself , complain about all the maybe's and the why's and what-if's; then, it is time to move forward. 

Growing up I always used to say that it was a 50/50 shot at my brother or I getting MS, and if that were the case I wanted to bear that burden. As an older sister, I felt like it was a part of my duty to want to lookout for him. Well, you can say that my prayers were answered. 

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