#igg4

Sweet Reminder Of The Power Of Small Gestures

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Today is refill Friday; the day I add candy bags to the bucket on my desk for my co-workers. So, that meant I had to I get out of bed fifteen minutes early despite joint point, nausea and spotty sleep. I slicked my hair back in a ponytail (it’s shedding again due to hormonal issues) and I slid into what used to be tight Capri pants (now loose due to uncontrolled weight loss). Remarkably, the NJ Transit 8:59 train got into Penn Station on time. Then, I got cut off at the stairs from the tracks to the concourse by able bodied people who never see not care about my cane. I shot a dirty look and got in line. I limped up to the first floor then made my way over to the store. I was in and out in five minutes and got a discount.

Suddenly, I came to a dead stop. A little person was clearing a space for his double amputee wife’s wheelchair near the number one train. The crush of people barely stopped so the man began to shout. His frustration struck a chord with me so I gestured for people to stop and they did. The awkward a smiles we got because of our appearance didn’t bother me. I took my candy and went onto work.
An hour later, a co-worker delayed going home to do me a favor. I got a doctor’s appointment easily and I heard from a friend who told me the other day that if he won the lottery he’d use some of the money to help me. I didn’t think the day could get better until o was greeted with this after lunch. It’s Hi in tootsie rolls; a sweet message to remind me that the smallest gesture can add so much joy to a day. #wabc #nyc #randomactsofkindness #disability #chronicillness #chronicpain #autoimmunedisease #igg4 #njtransit #pennstation

Creature Of Habit

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I am a creature of habit. I eat the something every morning at work to take my medication. I buy it from the same coffee cart. I get one of three lunch options. Ad, I refill the candy on my desk on Monday, Wednesday and Friday. When we go out to eat, my fiancé, his son and I tend to go the same places. We notice the servers but I never thought they’d remember us. After all, they serve dozens of people a day. Okay, the fact that we are an interracial couple with a woman using a cane and taking pills for an autoimmune disease might make us stand out. But, nonetheless, they see a sea of faces.
Yet, the other day my fiancé and I went to Bertucci’s in Connecticut for lunch. Our spirits were down and neither of us were feeling particularly well. We ordered but by the time our meals came we couldn’t eat. So, I asked for carry out containers and the check. The waitress returned with the boxes but the bill wasn’t there.
“I’m sorry. We’d like the bill.”
“I got it for you. Your meals are on me. You both always come in here upbeat and seem happy together. Today I can tell something is wrong. I don’t know what it is but it will be okay.”
“No, no, please take the money.”
“No, please let me. I do hope things work out.”
All I could say then was “thank you!”

We left her a $25 tip for making our day.
#randomactsofkindness #bertuccis #ct #waitress #disability #igg4 #autoimmunedisease #chronicillness #interracialcouple

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. 

How Do I Face My Greatest Fear? Being Childless

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“You’re running out of time,” said my OB/GYN following my latest exam. Does she think I don’t know my own age? I wondered.

“The last time we talked, we discussed that this is the best time for you to get pregnant,” she continued. “So what’s going on?”

It took me a moment to process the gravity of what my doctor was saying. I felt my stomach drop and tears begin to form as I thought about how my greatest dream was slipping away. I’ve always wanted kids. In fact, I can’t imagine my life without any. Yet, time is passing by and I’m not closer to motherhood.

I cleared my head and responded, “I understand. At this point, I may have to proceed on my own.”

“Well, I hope that’s not the case. In the meantime, I think you need to talk to a high risk doctor about your autoimmune condition to see how it would affect you during a pregnancy. Right now, your blood work looks good, you’re at a great weight and your exam was perfect. However, I’ve never had a patient like you. Do you know of anyone else with IGG4-RD that’s had a baby?”

“No and neither has my rheumatologist. All I know is my body overreacts to any virus, incision or changes of any sort. It might not be kind to a fetus. Combined with my PCOS, bringing a child to term won’t be easy.”

“Ever consider a surrogate?”

I want to see and feel my child growing just like other women, I thought. But, I replied, “I don’t know that I could afford that.”

“A lot of people have success with crowdfunding. I think you have a unique story that would resonate.”

“I’ll think about it,” I muttered. But, I thought, I don’t want to beg people to support me. No matter how large my medical bills have gotten over the years, I’ve always tried to pay them myself. I can’t expect strangers to care about my struggles.

I slowly got dressed and contemplated the reality that I may never have children of my own.

I thought, I never imagined surviving all of my medical struggles to end up without a family; with no one to love or care for me as I age. I paid hundreds of thousands of dollars  to survive surgeries, procedures or a lymphoma scare because I thought the best years of my life were yet to come. But, now I have to face the fact that with every passing day I get closer to having to face my greatest fear that I will be childless; that the future I envisioned will not come to fruition.

How am I going to face this? I wondered.  I suppose like every other obstacle in my life: think, plan, pray and never give up. 

 

 

 

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. 

Will Relying On Faith Be The Only Way The Sick Survive Under the AHCA?

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I bowed my head and prayed yesterday as I watched the votes roll in for the American Health Care Act. I wondered, how can elected leaders vote on a plan without knowing its impact, it’s total cost, or its benefits? How could they, in good conscience, believe that agreeing to something blindly is the right way to protect any American?

By the time my prayer was over, the tally was in and the measure passed in the House. I watched as President Trump heralded Republicans for a bill that will allow states to get a waiver to let insurers  off the hook for covering people with pre-existing conditions.  I wondered, how the same man who denounced discrimination just hours before could applaud a bill that is biased towards the chronically ill?

Before the vote, President Trump signed the Religious Freedom Bill. He said his administration wouldn’t allow people of faith to be targeted, bullied, silenced or discriminated against again. Was his outrage over oppression genuine? Or, is it reserved for people who shared the same income, values or political views?

Of course, the executive order the President signed relaxes the tax rules for religious organizations and the rules regarding punishing them for participating in political campaigns. Conservatives hope this will mean more money in their pockets and speaking opportunities. Meantime, the AHCA  they support will take more money from the working poor, elderly and chronically ill Americans. Aren’t the people affected by the ACHA the same ones religious leaders should be striving to protect and help?

The ACHA will also defund Planned Parenthood, removing medical care options. Conservatives see this as a victory for family values and the right to life movement. But, who will care for sick children born to parents without healthcare? What kind of quality of life will they have without proper medical attention?

I can only assume the President has decided the sick will survive on faith if the AHCA passes in the Senate. Or, perhaps his administration is sending message that discrimination against the sick is okay if it’s good for his political clout.

#ACA #obamcare #healthcare #ACHA #trump #PresidentTrump #sick #discrimination #ChronicIllness #Autoimmunedisease #PlannedParenthood #ReligiousFreedom #ChronicPain #igg4

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