FitNik Narcoleptic

𝐏𝐑𝐎𝐆𝐄𝐒𝐒𝐈𝐎𝐍>𝐏𝐄𝐑𝐅𝐄𝐂𝐓𝐈𝐎𝐍⁣
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The price you pay, the suffering you will go through to make your dream come true is infinitely smaller if you never do.⁣
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𝐅𝐑𝐎𝐌 𝐋𝐄𝐅𝐓 𝐓𝐎 𝐑𝐈𝐆𝐇𝐓⁣
• 𝟮𝟬𝟭𝟱 about a month after receiving an official diagnosis for Type 1 Narcolepsy and at my heaviest, fluctuating somewhere between 180-190lbs⁣
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• 𝟮𝟬𝟭𝟲 about 9months after taking the first picture and at my lightest weighing in at 125. Although the time that it took may indicate it was an easy goal to attain but it was far from that. Within the time it took to achieve this goal, I had to whole-heartedly invest in myself regardless of the trial and error treatment process I was enduring.⁣
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• 𝟮𝟬𝟭𝟳 post appendectomy. committed to getting back into the shape I was in prior to surgery.⁣
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• 𝟮𝟬𝟭𝟴 a year of pushing my comfort zone, keeping things consistent no matter the circumstances.⁣
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•𝟮𝟬𝟭𝟵 a year of opportunity that reinforced what I was unknowingly doubting in myself.⁣
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• 𝟮𝟬𝟮𝟬 diagnosed and presented with the reality of living with Multiple Sclerosis... the rest is to be written.⁣
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Looking back and reflecting how far I’ve come the last 5 years, I know this is only the beginning. Rather than dwell on the diagnosis or the mistreatment I’ve received from medical professionals, I’m going to continue to make a name for myself... a name that stands out among the rest and is recognized to be everything I was told I could not be and then some. I will stand for those who are walking a similar path. ⁣
I will not compromise.
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𝗔𝗗𝗩𝗢𝗖𝗔𝗖𝗬
𝗔 - Awareness about an issue
𝗗 - Develops research on issue
𝗩 - Voices an position on issue
𝗢 - Organizes events to promote an issue
𝗖 - Campaigns an issue
𝗔 - Advances the importance of an issue through policy
𝗖 - Calls others to action
𝗬 - Yearns for Change

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@ Clearwater, Florida

to the day I discovered that cold weather is a trigger for some MS flare-ups.
Not only did it cause my diplopia/strabismus (double vision and improper eye alignment) to worsen but I also had the pleasure of experiencing tingly numb feet🙃
Although I’m still struggling to adapt to the new “norms” that come with living with MS, there are moments where I can’t help but laugh at how ridiculous I am😂

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Be the person who builds someone up. Put their insecurities to sleep. Remind them they’re worthy. Tell them they’re magical. Be a light in a too dim lit world.

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𝗔𝗗𝗩𝗢𝗖𝗔𝗖𝗬
𝗔 - Awareness about an issue
𝗗 - Develops research on issue
𝗩 - Voices an position on issue
𝗢 - Organizes events to promote an issue
𝗖 - Campaigns an issue
𝗔 - Advances the importance of an issue through policy
𝗖 - Calls others to action
𝗬 - Yearns for Change

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When you have a rare disease, you face two battles. One being the illness itself. And the other, living in a world where so few people understand what you’re up against.
Over the course of the last couple of days, I was fortunate to meet one of those few people and would like to take some time to express how much gratitude I have for Representative(FL) , who strongly stands as a member on the Rare Disease Congressional Caucus.
Thank you for taking time out of your busy schedule to not only listen to my personal story but to acknowledge and validate my concerns. It is people like you who help make the difference that is being needed within the Rare Disease Community.

To attend as an advocate representing has been a honor and priceless opportunity where I have been able to share my story with those who have the power and resources to positively progress what is being done for the rare disease community.
Diagnosed with Type 1 Narcolepsy back in 2014, I had unknowingly been fighting the never-ending battle that is Narcolepsy dating as far back as 1999.
Each day I wake up and am forced to choose a chemically dependent lifestyle. I take 4 medications, 3 of which being controlled substances to combat my debilitating symptoms only to live a somewhat independent life. Although my Excess daytime sleepiness is always a lingering terror that hides behind the lids of my eyes, to have too still experience the sudden occurrence of a cataplectic attack is one that is still debilitating beyond what most can fathom.
When Someone experiences a cataplectic attack it is triggered by a sudden spike in emotion, and for me it occurs when I am expressing happiness or laughter. When enduring cataplexy, my body goes into full state of sudden paralysis where I uncontrollably collapse and am left conscious unable to see, speak, or move until the triggering emotion has passed.
There have been times where I am alone and in a situation where my safety is in jeopardy, I have hit my head and been left in public to have all the eyes of the people gander at my seemingly lifeless body. Ive had individuals portray themselves as “friends” who later would strive to induce an attack only to laugh at me as I remain helpless.
Although there are treatments available and have granted me a greater quality of living, more needs to be done.
which is why I stand as an advocate in support of increased funding for FDA Orphan Products Clinical Trial Grants Program and Natural History Grants Program.
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Thanks to and for meeting with advocates during
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I would also like to thank the amazing team with for being the pioneers behind
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•⁣ @ Washington Capital