HERE'S HOW IT HAPPENED FOR ME - CLIFFsNOTES VERSION
This story started pretty similar to anyone else's who has had to deal with chronic or acute illness. I'm living along...regular life, regular routine, regular social life. Doing good things. Being a good person. Making moves. New Yorker and all, I'm obviously a player in the daily hustle and grind. Ain't no thang. Treading along. Making bad decisions...not a big deal, in fact often celebrated and seen as rebellious and zero f*cks. (I put asterisk for my word-sensitive friends, but I throw the f-bomb around lovingly and frequently...Perhaps I should add that to the already lengthy "don't sue me for being real" disclaimer...digressing.)
I was working at Noah's Kosher Mart in the Skyview Shopping Center on Riverdale Ave. 20, maybe 21, I'm ringing up groceries and my hands start stiffening up and freaking out. It felt like I was being electrocuted and had no control over the straightening of my fingers. It's like when you discover that your knuckles can do the double-jointed thing, except they weren't un-double jointing. It was weird. Jolts of electricity pulsing sharply through my fingers and I'm trying to play it cool to not call attention, but ended up going home because I was so scared and embarrassed. That was the second time it happened that day; the first time was as soon as I woke up that morning. In fact, it woke me up. So I thought I had slept weird and my hand was just like sleeping or something. It was just numb and tingly, like a dead leg or hitting your funny bone.
A couple days later, or maybe it was weeks, I started to feel really weak. It legit felt like my right side was carrying my left. I felt so much heaviness, numbness, and pain on the left side. My mother had to help me shower a couple times since I was a fall's risk. It made me very scared, sad, hopeless, defeated.
I went to see a cardiologist friend of the family (my dad is an MD so we were well connected in the medical world; I also worked in healthcare administration and had done so since my teens - I knew a lot of doctors, had A LOT of access), and he told me that based on my symptoms and absolutely no analysis - worst case scenario..I have MS - Multiple Sclerosis. So, what is MS? I felt like every third person I knew had an aunt that had MS but nobody really knew what it is. Being from a medical family, I began the western medicine journey to managing my MS. What a whirlwind.
My first spinal tap was actually not so bad, except that doctor was kind of a douche. Sorry, but he was not nice. He was the best at spinal taps though. No side effects and very little pain afterwards. I think where he lost me was in the delivery of my perceived "life-as-I-know-it ending" diagnosis of Multiple Sclerosis. He told me what was wrong with me and I started crying. Again, I was maybe 21. He said I need to stop crying and ask questions. That this is a very scary thing and I need to face reality right now and buck up. I honor him now for wanting me to bypass the grief and loss I felt in that moment. The other doctors were a bit more gentle, but the overall theme was that I would never get any better, and daily injectable medication and frequent rounds of steroids would prevent me from getting any worse. There was nothing I could do and this is just my life now. Needles and steroids and hospitals. Hooray! I challenged the diagnosis with 3 doctors, and each time all diagnostic testing came back "supportive of MS."
So now, I had MS. I'm a good patient so I always follow doctor's orders. I had a hard time with the daily injectables, but I took the steroids as directed and kept all my appointments. I also made sure to admit myself to the hospital when things got really bad, usually only for 3-4 days. Nothing like asking for a week or more off of work because you're unable to perform your duties as an admin. Luckily, I had baller insurance and FMLA, so I could keep my job . I developed crippling anxiety from the fear and uncertainty surrounding my illness, so I made sure to take my Ativan twice a day as well. Gotta keep calm. For pain, can't forget the Tramadol, Aleve, and Oxycodone or muscle relaxers.
And then for the Chronic Urticarial Vasculitis (chronic hives) that followed a few years later, unrelated I was told - I made sure to keep up the additional prednisone and Zyrtec.... or no better go for Claritin D....or actually wait Allegra, yea that. Don't worry too much about the social smoking or drinking, or cakes, candies, restaurant food, McDonald's drive-thru, gas-station snacks, diet Pepsi and lack of sleep. Not to worry about food sensitivities, gut health, toxicity, and stress. Everything in moderation.
I hit a super low point after being dumped by the guy that I thought was THE guy. He was so handsome and smart, funny and sweet, but he didn't love me, which meant I couldn't love me. He didn't see how much I loved him. He just didn't understand my pain and my diagnosis and my very more important than anything story.
I was living in New York City, way outside of my means, eating all the crap, thinking all the crap, and accepting all the crap. My insides were dying and so were my outsides. Flare-ups were lasting longer. My sense of humor was fading. I was powerless. Game Over.
In the peak of my symptoms and anxious depression, the script flipped..big time. I began volunteering my time at NY Common Pantry in east Harlem and felt I was imposing real change and making an impact. My passion for advocacy blossomed. I began to notice how my deep empathy toward others, especially those who suffer, fueled me to fight for them, to help them see their light. I got my power back by helping others feel empowered and loved as well. For the first time in a long time, I saw light in the darkness.
My worldview changed as did my level comfort in the victim seat.
A few weeks before my first really bad episode with hives, I had seen the documentary, Fat, Sick, and Nearly Dead. This documentary was specifically about people struggling with Chronic Urticarial Vasculitis. I shit you not, I literally saw this doc just weeks before I woke up with inexplicably swollen feet that felt like fire. The next day, the swelling turned into bruising, and I was like wtf. Then I did all things - allergist / immunologist / rheumatologist / neurologist / hematologist / go-f*ck-yourself-ologist - only to find that I was a question mark to modern western medicine. This documentary, however, had people healing their symptoms by using food as medicine! Hell yea, I'm gonna try that! And I did.
Fast forward to today. I've taken full responsibility for my life, completely changed the way I eat and have evolved from both a human and spiritual place. And, again, I have had NO MAJOR SYMPTOMS IN MANY YEARS. And now, if my health gets a little wonky, I know what to do and how to restore balance without the use of drugs. I am not the only one having this experience. There are many others and I am excited to share their stories with you as well!
There is a sweet spot for healing where science and spirit meet. It is available to each and every one us. All you need to do is access it.