Monday, December 30, 2013

"All the world is suffering, it is also full of overcoming" -Helen Keller

Hey world.

I have never been good with starting things. Conversations, projects, homework, and even sometimes my car. So I guess I'll just jump right in.

I'm a 23 year old college graduate. I have a great family, a handful of great friends, and my own room on the bottom floor of a triple-Decker in Boston.

I feel like I'm writing an elevator speech here.

I graduated college from a small liberal arts establishment. I got what I needed from it, and received my BFA in Photography. Immediately following college I entered the wonderful world of unemployment. Surprise. I went through two jobs after college. I started as a dispatcher for a towing company, and then moved on to a call taker at a fortune 500 company.

A few months after I started as a Customer Service rep, I woke up with horrible abdominal pain. After the longest 20 minute car ride of my life to the hospital, I was quickly diagnosed with "yucky pee" and tah-dah, a kidney stone. They put me on some pain killers, gave me a CAT Scan, and sent me home.

Had my college graduation party and my mom's 60th birthday when I got home. (sorry mom!) I don't remember much of either celebrations thanks to my partner, acetaminophen and hydrocodone, (aka Vicodin).

Fast forward to a few months, I'm back in the hospital for three days. Turns out my kidney stone was super long (okay only like 5 mm but hey that's long for a kidney stone) and they used a laser to break it up. Surgery went well, I was released. 

After I was released, I was reading my work up that had been done on me. I noticed something at the bottom of my CAT scan. "Slight scarring/interstitial fibrosis on bottom of lungs". Well I tend to over-think things, so naturally I freaked out. Mom said it was nothing to worry about, so naturally, I STILL WORRIED.


I reached out to my doctor, who set an appointment. I went in for some lung tests (sitting in the clear plastic box etc). They did a complete work up of my blood.

A week later, I moved to Boston from Washington D.C. I work for AmeriCorps, living at poverty level to help senior citizens by participating in SNAP Outreach. 

I get my blood results back, and my RA levels are elevated. My brain goes to "RA? Isn't that an old people disease??"

I set an appointment with a lovely Rheumatologist at MGH. 

I made a list of all of my symptoms/problems I have with my body. I have always had creaky/sore knees, and figured I was just super out of shape. I wrote that down. I also wrote down sore fingers, and my eyes are dry. 

When I met with the doctor, she took one feel of my fingers and said "yep you definitely have Rheumatoid Arthritis."

She immediately prescribed me non-oncology doses of Methotrexate. AKA MX. It's a mild drug in the chemo family. That's all I heard, way to go brain. 

For those of you who don't know what RA is, I shall enlighten you to the best of my ability. Rheumatoid arthritis is an auto immune disease. It means my immune system is attacking my joints. Basically my body is attacking itself. So cancer is the same kind of thing, and that's why they treat it like cancer.

This is the hard part. 

I was talking to a new friend the other day. And he asked me what my biggest fear was. Honestly, it's not the little mouse that now occupies a corner of my room, it's not spiders, it's not being mugged on my way home in Dorchester, I'm living it. I am trapped in my own body. My body basically killing itself.


I mean when I was little, and I woke up from a bad dream, I would just pull the covers over my head, and feel safe. I can always outrun the mugger in Dorchester, or provide a swift kick to the..., I can buy some mouse traps, I can squish the spider, but I can't escape my body. 

People always talk about fighting diseases. How do you fight your own body? I take my medicine, I eat healthy, I exercise as much as my lungs can take it (unfortunately I can't go up stairs quickly anymore, and cold air is horrible to me), but what is fighting? I never understood when people say "Sasha you can beat this". Okay I'll stay positive but I don't know it was always a fluid concept to me.

This turned quickly morbid and I'm sorry. I'm still dealing with this, and am waiting on my cardiologist appointment to see how my heart is doing with this. 

I am so lucky to have a great support system. I have my mom and dad, and thanks to being an AmeriCorps member, I have people across the country who are there. I have my extended family, who has been amazing. 

I will end this first post with a quotation my coworker said to me.

"Sasha, remember you have RA, RA does not have you!" sounds cheesy, but maybe I need some cheese in my life...

I do love cheddar...

4 comments:

  1. Sasha, my grandmother was diagnosed with RA in her 20s too. She lived a loud, crazy life and lived well into her 70s, she even joked about her RA all the time. She also found a husband who took sweet care of her till the end. Wishing you well -- Alina

    ReplyDelete
  2. Sasha,
    I am so very sorry to hear that this long complicated saga is ending with this diagnosis. It will be a lot of getting used to , a lot of learning, a lot of adapting, a lot of accepting..... we know you can do this, you are made of very strong stuff! Hang in there.... I know you can figure out how to modify your life so that RA will not define you, will not overtake you. Hope to talk with you soon. Love, Aunt Susan

    ReplyDelete
  3. Sasha, I am a firm believer that the brain is a powerful tool. If you feel like this is beating you, it will. I know you're not that kind of person, you are a very strong minded person. So put some of that mind to work and believe that this cannot slow you down or interfere with your plans in life. Love You - Kennie

    ReplyDelete
  4. Hi Sasha, As a person with Multiple Sclerosis, I understand not wanting to burden anyone. You are not a burden. You are a lovely, kind, caring young lady and will always be this way. Take one step at a time, as you are currently doing. You are never alone, I am always here for you, and many others are too! :) Love you bunches, Kath

    ReplyDelete