Rich In Other Ways

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I’m not a rich woman at all, at least in a monetary sense. I’ve worked hard for more than two decades and earned more than most but I’ve also shelled out the vast majority of my cash to stay alive. Medical bills due to my autoimmune disease, igg4, sapped my account more than once. Yet, I’ve consistently come up with enough money every week to keep the candy basket on my desk full.

Sometimes, my co-workers contribute to the candy fund. But, the task of picking up the treats usually falls to me. Despite this, getting something that provides my colleagues with a little piece of happiness each day has been my joy. At times it’s given me a reason to get out of bed when I don’t want to in order to fill my “responsibility.” It has motivated me to walk further and get stronger.

Last week, as my mental and physical exhaustion reached a point when I couldn’t make another candy run I was given a gift. The candy in the picture was dropped off to my co-workers/ friends. Money was also left to pay for the next batch of sweets too.

No, I’m not a rich woman when it comes to money but I am when it comes to love and support.

#FoodForTheSoul #candylove #chronicpain #disability #invisibleillness #spoonie #igg4 #autoimmunedisease #chronicillness #coworkers #nyc

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The Need To Escape

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I woke up after just six hours of sleep and thought I’m not going to be able to function today. My eyes burned and my head throbbed as I glanced at my phone. Just for one day I wish I could escape this body, I thought.

I swallowed a pill and used my legs, which had a tingling sensation from the knees down, to stumble to the bathroom. As water washed over me, I mumbled my morning prayers. I asked the aching in my joints and the pins and needles in my calf to end. But, it didn’t.

So, I got back to my bed and did Yoga stretching. Finally, I felt okay. Unfortunately that changed as my fiancé and I made the 1 1/2 hour long drive to CT to pick up his son.

We could both barely stand when we got there but the smile on that child’s face upon seeing us made it worth it. We hurried off to Chick-Fil-A for lunch in North Haven. A worker came up and asked about our visit, cracked some jokes, and made us feel as if we were in someone’s home. The banter relaxed me as I took more meds.

When we arrived at our house a few exits away, yard work had to be done. I clipped bushes with a hand held hedge trimmer. The whole time, the rotator cuffs in both arms felt like they would give out. I kept thinking, I wish I could escape this life; everything is so hard for me.

At around 6:45 we decided to head to the mall. We were about to try to escape from Alcatraz.

50 minutes were on the clock when the door to our prison cell was locked. My fiancé, his son and I figured out the first clue easily. Then, my ” stepson” found a box with the second clue. My fiancé solved it and we were on to the third with forty minutes to spare. But, we hit a wall. Nearly 17 minutes and a mini meltdown passed before we got into the box that gave us the code to find the final clue. We were free wth six and a half minutes left.

On the ride to dinner, I thought, I’ve often wanted to escape from paying my bills, my job, my body, and my chaotic life. Today, I learned from an escape room that there are no easy exits. I may always require help, a plan and a drive keep me from giving up. But, with the love of family anything is possible.

#NeedToEscape #ChronicIllness #ChronicPain #Disability #AutoimmuneDisease #CT #NJ #ChickFilA #EscapeRoom

Half My Life Recording History

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“Can everyone gather in the middle of the newsroom?” My boss said. 

I cringed.

I don’t have time for this, I thought.

I was looking for new video of a stranger punching a bicyclist in the face when my boss called out. I was also waiting for the Belmar drowning package and looking at an update about the jury in Cosby Sex Assault trial. 

“Nika!”

I didn’t know who called my name but I figured I’d better take a few moments away from my desk to see what was going on.

As my boss strolled towards me, I realized all eyes were on me. 

In a panic, I turned to walk away. When I did, I hit a cup in my co-worked Bryan’s hand. Soda covered his jacket and t-shirt. I broke away from the gathering, limped over to to my desk as fast as my cane would carry me, and grabbed napkins.

“Where are you going?” 

“I don’t want to leave Bryan soggy,” I replied. 

Seconds later, I felt a hand on the small of my back.

“Nika has been at ABC 20 years,” my boss said as she extended her hand forward. It contained a pin.

Wow, I’ve come to this place for nearly half my life, I thought, as she continued speaking.

“She always comes in with a smile on her face even though she’s been through so much. She deserves to be here. She deserves to be on this Earth.”

Her words choked me up. They made me think about all I survived in my years there; it’s enough to fill a medical journal. In fact, I had one of my two mini strokes when i was sitting at my desk.

Despite my health battles, I showed up to give a voice to other people’s pain, as well as the struggles and triumphs of the world. 

Through my medical strife, my job was a refuge. For eight or nine hours a day, I didn’t fret about the tests, the pain, the pills, the surgeries or the bills. I didn’t worry about my mortality. 

As I made my way back to my desk, there were hugs and shouts of congratulations. Sometimes I said thank you. Other times, I said, “is this really good news? I still have another two decades to retirement.”

I was uncomfortable with the attention. But, I was glad anyone cared that I reached a milestone that I wasn’t sure I’d live to see 20 years ago. 

Redefining Family

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I’m not a mother in the traditional sense but I was in the audience to watch a young man I’ve watch grow since he was four years old graduate from elementary school. I felt much like I did eight years ago when my “baby brother” graduated from Drexel University and I did a lot of the same things. I scoured the crowd looking for him and cheered when he received his certificate/diploma.

I sat with family. Yes, family. For the first time since I’ve known my “stepson” his father and I sat beside his mom, stepdad and maternal grandparents. His maternal grandmother gave me a magnet that said inspire. She said my battles with chronic illness are inspiration to her. Then, we walked out to the garden together. His stepfather made sure To push the door so it didn’t strike my cane. And, we talked and even took a group photo. It occurred to me that all is have grown over the years too; allowing our love for that child to let us put our differences aside for a few hours to give him the family he’s always wanted.

The woman I call my sister-in-law did the same thing for my family eight years ago when she let my nephew stand with us when his uncle graduated. I guess I was just paying it forward. Thank God for progress!

 

#family #graduation #blendedfamily #disability #autoimmunedisease #chronicillness #payitforward

Fear of the Unknown

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6:35 pm I walked out of work and realized I couldn’t read the Kiehl’s store sign across the street. It was odd because I have 20/20 vision; one of the few things my autoimmune condition doesn’t usually effect. 

I shook my head, wiped my eyes and put pressure on the veins inside my eye sockets in an effort to clear my vision before I got to the number one train on Manhattan’s Upper West Side.   

For a second, I thought that I might get dizzy and fall onto the tracks. So I took a few steps back from the edge and inhaled deeply a few times. I waited for the train then took it to Penn Station. 

I boarded my NJ Transit train and slumped into a seat. By then, I was weak, shaky and my eyesight was even cloudier. 

I could barely see the gap between the train and the platform when I got off at Newark Penn Station. Every step down the stairs was extremely cautious; every block home looked like a tunnel. When I finally got home, I collapsed on my bed. 

At 5 am, a stabbing pain in the left side of my head woke me from my sleep. I I took pain meds but nothing helped.  So, I tossed and turned in pain until 9 am.

By then, I was up and out, waiting to hear of I was having my third stroke. Sitting there alone, I wondered how I’d get home or care for myself if my condition worsened. 

Thankfully, I didn’t have another TIA. Central nervous system issues caused the muscle contractions and sharp pains in my head, neck and shoulders that were unbearable when combined with my usual knee and lower back pain. 

Now, I’m checking my blood pressure hourly to look for sudden spikes. I’m also taking Fioricet and Tramadol every four hours. But, I have no medicine for the concern that fills my heart because my body is so unpredictable. 

A Love Letter To My M.F.F. (Mother and Friend Forever)

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I’m her first born, her baby girl, her only daughter and I am the sickly one. My twenties and thirties were a disaster. The autoimmune condition that frequently tortures me nearly claimed my life on several occasions. Each time, my mother rushed to my side and nursed me back to health. I felt guilty. I thought I was a burden. But to her, she was simply being a mother to me; a job that would never end. 

Thankfully, over the last year my medical issues have lessened, giving mother and I the ability to just enjoy together. Recently, we chatted as we sat across from each other while eating a lunch after a morning volunteering together. We talked candidly about our relationship woes, difficulty with the children and our medical problems. No topic was off limits. No judgment was passed. We simply exchanged advice, observations and offered support like two girlfriends would do.  

As we walked back towards my car, the lyrics to a song popped into my head:  

“I’ll always love my mama

She’s my favorite girl

You only get one, you only get one, yeah

I’ll always love my mama

She brought me in this world”

I realized the woman beside me taught me how to be a caregiver, to give back, to be a good partner and to pray when all else fails.  She wasn’t just my mother, she was and is my friend. She’s my M. F. F. (Mother and friend forever)

#mothersday #family #love #autoimmunedisease #caregiver #friends 

Why Does Congress Think It’s Okay That I Die?

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I may only have two days left before I am handed a death sentence. House Speaker Paul Ryan and President Trump are pushing a new healthcare bill that would lead to my death or bankruptcy. You see, I have a pre-existing condition. Without the protections from the Affordable Care Act, buying, obtaining or keeping health insurance will, once again, be nearly impossible for me. Why don’t I deserve the opportunity to fight for my life?

I’m not, nor have I ever, looked for others to pay my medical bills. In fact, in the last 14 years I’ve paid $168,000 out of pocket for my care; not to mention the lost wages from my job. Yet, I’ve held down a full-time job, paid my taxes and voted in elections. I’ve been a good American. Why should I, as a taxpayer, have to fight for medical coverage when it is given to the people who represent us in Congress?

I am being asked to choose between keeping myself alive or losing everything I’ve worked hard to maintain because I was born with a condition that has no cure. Why is my life so disposable? How can confessional leaders vote in favor of a plan that endangers their most vulnerable constituents?

I’m not sure whether those who are determined to repeal and replaced so-called Obamcare believe this is the right thing to do for all Americans. I think they’re using this measure to settle a political score. Should human life  be treated like a political pawn or the previous gift that it is? Why Is no one considering my right to life?

I certain don’t believe those who penned the constitution, which guarantees the right to life, liberty and the pursuit of happiness, believed these rights were solely dependent on wealth. Clearly, our confessional leaders do. Without guarantees for pre-existing conditions will only the wealthy will survive medical trials? Is that the America they really want?

#paulryan #obamacare #Kimmel #Trump #PresidentTrump #Congress #ACA #ChronicIllness #AutoImmuneDisease #Igg4 #ChronicPain  #RightToLife #Healthcare