A Dichotomous Swirl of Emotions + Experiences

It’s been four very eventful years. There are too many feels attached to saying that. On the one hand, four years has felt like a never-ending, grueling, uphill battle. On the other hand, it feels like an accomplishment to have come so far and still be standing, literally and figuratively.

***

Each year since the initial onset has been so different. Every year was accompanied by a myriad of medical issues that have affected virtually every aspect of my life - physically, emotionally, viscerally, and socially. Referencing year #3’s “NMOversary” post, Desperate to be in Denial Yet Painfully Aware, I can’t dispute that the underlying sentiment remains unchanged; I am still very much all over the place. I’m also really tired.

I had an epiphany a few weeks ago - I realized that I haven’t felt genuinely happy in a long time. Initially, I couldn’t pinpoint the reasoning for the void but then it dawned on me and eventually made sense. I had a fantastic summer 2017 - I was feeling good and finally getting my groove back. And then, it happened...

I had a relapse and it hit me hard. It had been so long that I forgot what it was like. It sucked the life out of me. I cruised an entire year without having to succumb to steroids. How did this happen?

me + steroids = no bueno

My medical team quickly went back to the drawing board to devise a plan since it became clear the current regimen was no longer effective. They came up with Eculizumab (Soliris) - the single most expensive drug in the world since 2010. What followed was eight weeks of sheer hell. My insurance provider denied the drug twice. I resorted to social media and sent a number of desperate pleas to executives at Partners Healthcare (my employer) and the insurance company before it to finally got approved. I had been so focused on getting the drug approved that I didn’t look into what getting the medication actually entailed. In short:

Scheduling | Weekly infusions x 5 @ 900 MG; biweekly weekly infusions @ 1,200 MG beginning week 6

Immunization | 4 meningococcal vaccines in 4 weeks. According to the CDC, patients receiving Eculizumab are at a 1,000-2,000 times greater risk for contracting meningococcal that can turn fatal

Medication | Taking Amoxicillin (yikes, stomach ache!) twice daily for further protection against meningococcal

Plan | Indefinitely until something better comes along

Exhausting right? Well, there's more. I had two surgical procedures, experienced my first (and hopefully last!) kidney stone, felt like I was going to die from the flu, gained a puzzling 7 pounds, have gotten one too many post-infusion UTIs, and my body feels like its 85 years-old due to chronic back pain. [Please do not be fooled by my outward appearance as it doesn’t accurately reflect how I physically feel.]

There are times when I feel like a prisoner in my own body. Sometimes, I’m completely desensitized and functioning on autopilot while other times, I’m debilitated with overwhelming sadness and frustration towards my circumstances. Dealing with a chronic illness is like being perpetually seasick - there are so many ups & downs and frequent, nauseating bumps. It’s challenging to get used to this way of life because seldom does the situation plateau. Sigh, I daydream about taking a break from it all. My body, mind, and soul are tired from constantly fighting.

To add insult to injury, my neurologist, Dr. Cho, just told me at my most recent follow up that he’s moving to Iowa. Dr. Cho has been by my side since day one of this entire ordeal so this was a huge loss and a sharp blow that came out of left field. I don’t know what dealing with my illness is like without him.

*END RANT*
Phew! Sorry, I really needed to vent!

As the title of this annual observance suggests, not ALL was bad! In fact many wonderful things happened:

Graduated just 3 hours before
boarding a flight to the UAE!

- Traveled to some amazing places like Quebec City, Provincetown, China, Singapore, Denver, San Francisco, Los Angeles, Dubai, Abu Dhabi, and even Philadelphia LOL

- Completed a certificate program in Management & Leadership from Boston University’s Questrom School of Business

- Hosted three successful foundation events allowing us to fund and donate to NMO-related research

- Featured (finally!) in the Improper Bostonian which has been a silly little goal of mine since moving to Boston 11 years ago

- Worked with an all-star team and posed as an Indian bride for Wedding Chicks

- Narrated a medical education video published & featured in the New England Journal of Medicine

- Planning to capitalize on a business idea that stemmed from personal struggles

It's important to find a balance and I'm doing the best that I can to be positive and keep my chin up while having fun. I'm frequently amused by some of the bizarre yet hilarious first dates I've entertained, get to attend milestone events of my loved ones, interact with really inspiring people, and am evolving as a woman and 'adult', whatever that means. Oh yes, I am also thoroughly enjoying being a blonde!

My birthday is approaching and I'm entering my 5th year of being from the island of misfits. At the risk of sounding cheesy, honestly, all I want this year are endless resources of love, strength, and happiness. I want to feel good inside and spread kindness in the world. I want to be a #GIRLBOSS and continue to strive to be the best version of me. 

It's been so long since I've written; what a therapeutic exercise! Today, I randomly felt a sprinkling of inspiration that's been missing for quite some time and I'm grateful for that. xoS