Light One For Lupus

Tears filled my eyes when I found out this news this morning.

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Last year in April, I was invited to Trenton to speak in front of the Medical Marijuana Program Panel. My goal was to have Lupus added to the list of approved illnesses for the state of New Jersey. I was the only one who got up in front of a room full of people to advocate for Lupus. I was also the youngest. My biggest fear was that they weren’t going to take me seriously because of my age, but guess what?! The way I presented my speech was so powerful that it actually made a difference.

Fight for things you truly believe in, even if people don’t agree with you. It took awhile,img_9021but as one of the only people to be advocating for Lupus in front of the Panel, I’m beyond stoked to announce that if you live in New Jersey and suffer from Chronic Pain due to a Musculoskeletal Disorder, you can now find a doctor who participates in the Medical Marijuana Program (MMP) and apply to get your license! This beautiful flower is slowly but surely altering its reputation. Cannabis saves lives, it’s the healing of the nation and this is just the beginning. I’m beyond grateful to have left my mark in the state where I grew up. #LightOneForLupus #MedicalMarijuana #FuckLupus

If you’d like to read my speech that I read in front of the panel, I will paste it below. My original speech was way longer but I found out last minute that I only was allowed a strict 3 minutes to speak, so I had to improvise and only talk about the important parts of my speech. (If you’d like to read the original full speech, send me a message and I can send it to you). Keep in mind that how you say things is what gives your words power. I was in high gear that day and the words that poured out of my mouth were spoken with passion.


What I said to the Panel:

I grew up an athlete. I started playing soccer at 3 years old with the dream of becoming a professional. I made varsity as a freshman in high school, and then went on to play two competitive years of college soccer. In 2014, my college held Nationals and we made it to the final round, resulting in me scoring the only goal for our team on that 40 degree, rainy, November night. You needed passion to be in that game that night. We ended up losing, but as I sat in the middle of the field, I wasn’t as sad as I should have been and I didn’t know why. Over the next few months, I finally realized why I felt those emotions in that time of defeat. I slowly started to see that was the last game of soccer I would ever be able to play. Soon after, I was waking up feeling stiff and sore. I didn’t think anything of it because I was an athlete, and pain didn’t phase me. But this wasn’t normal pain. This pain became an everyday burden, to the point where I became almost fully dependent on those around me. I had to have my boyfriend and family members dress me and help me shower. I got migraines so terribly and so spontaneously that they would cause me to throw up. I felt as if my body had aged 60 years over night.

In august of 2015, at 20 years old, I was diagnosed with Systemic Lupus Erythematosus.

With no regard to my personal feelings on pharmaceuticals, I was immediately given high-dosed steroids. Sure they helped the pain, but the side effects of weight loss, hair loss, and terrible mood swings were almost unbearable. I went from almost 130lbs of all muscle to 106lbs of basically just bone. So after all of the trial and errors within that first year of being diagnosed, that’s when I turned to Marijuana to ease my pain, help my migraines, and reduce my inflammation. Within the past 2 years, I have gotten myself from taking 6 medications, down to only two.

I graduated early this past December with a 3.7 GPA from Stockton University. While in school, I was getting Lupus migraines at least 1-2 times per week. I could barely open my eyes or leave my bed when these would occur. How was I supposed to complete my homework or study for a test? My teachers didn’t understand. If I did not have marijuana available to me, I wouldn’t have been able to bear the pain.

To wrap things up, I think the best part of me getting up here in front of you today is the fact that I’m not just doing this for me. My boyfriend and I are moving to Colorado in 2018, and by the time that the New Jersey laws would be set in stone, I’ll already be living in a legalized state. So I’m stepping out of my comfort zone just so that I can be the face of every individual who has lupus, who deserves to have that opportunity to wake up and not feel pain every waking moment. I can’t wait to say that due to my drive and motivation, I was able help make a difference in the lives of others who suffer from this disease by giving them a natural, more healthier and safer alternative to medication. I want to leave New Jersey knowing that I’m not leaving anyone with Lupus on the back-burner. We matter and our daily struggle is serious.

Give marijuana a chance and give us lupus warriors out there something they can count on to take away their pain.

Those who are defeated, define themselves as their disease. I refuse to be defeated.

Lupus took away my passion, my pride, my self-confidence, and most importantly, my independence; marijuana gave all that back. I am not lupus, I am Hailey Neluna. And because of marijuana, people can meet Hailey before they meet this disease. 

Thank you.


 

You can visit the NJ MMP website here for more information!

Stay lifted, xoxo.

 

 

 

18 thoughts on “Light One For Lupus

  1. That’s phenomenal! What an accomplishment. It’s the advocacy of patients like you that will advance the general understanding and treatment of misunderstood illnesses. You should feel proud of yourself 🙂

    Liked by 1 person

  2. Reblogged this on The Purple Purpose and commented:
    New Jersey Residents! With the field I am choosing to go into, and being an individual with Lupus, I can relate personally. If I were to take every prescription prescribed, or suggested to me, my chances of major organ failure increases and chances of addiction rises as well. Things have changed in the world of alternative medicine, opening the doors to new options such as, supplements, oils, edibles, vapes, and aroma therapy. My goal is to raise awareness, promote management, and help find a cure, to this cruel disease, as well as, many other autoimmune diseases, seeking and utilizing more natural and holistic alternatives.

    Liked by 1 person

  3. Best wishes. My empathy bleeds for young women such as yourself who get this life sentence, but that’s more encouraging than my mother’s generation when “if you were diagnosed” (which can take forever), your life expectancy was 9-12 months. Granted, I’ was diagnosed 28 years ago, so I’m the age of your mother or grandmother, but I’m still kicking and fighting. We can at least talk about it now. My family’s way of dealing with it with me was to tell everyone, including me, I was just lazy and fat … gained 100 lbs on steroids, but that’s all there was then and they kept me on them 6 for years! I was the one who said, “Enough was enough,” not the doctor. Really tough coming off them. So holistic treatments are what I’m doing now. We have advocates too, like Selena Gomez, who lost her kidney. Don’t be afraid too speak up. I’m so proud of you!

    Liked by 1 person

      1. We have to learn our own bodies because no medical doctors still don’t understand why it happens. I’ve seen theories come and go and be repeated every decade or so. DNA, yes, but not everyone is affected … puzzling.

        Liked by 2 people

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