Under The Surface

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Her name was Colleen. We’d only met a few minutes before she asked me to open my robe and expose my chest. After that she was silent other than to tell me to, “lay on your back with your eyes towards the ceiling.”

She used a scanner to spread warm gel on the right side of my chest. Then, she began peering inside me to see, what if anything, looked out of place. Moments later, she found something.I felt her stop the scanner and heard clicking on the keyboard. I glanced over and I saw it.

There was a dark circle on the upper left side of the screen. She used the tool to measure it, zoom in and then there was more clicking. She went back to that spot and one other on the right side several times before it was time to switch. Colleen examined the left side too. But, either she found nothing remarkable or I didn’t notice. Afterwards, I was free to go; allowed to leave to contempt the possible results.

I was on my way back to my office with fear running through me when my college friend/former roommate texted me to say that she and her son were in the city and they wanted to stop by. Years, distance and illness kept us from seeing each other often but today the timing was perfect.

My heart leapt and my concern about the test dissipated. All I thought about was being in the moment, catching up, showing them around the tv station where I work and absorbing the love from them.

#mammogram #breastcancer #friendship #disability #chronicillness #chronicpain #igg4 #nyc #ultrasound #roommate #tvnews

Eating My Feelings

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I tossed and turned worrying about the reason my doctor required a 3D mammogram in addition to a traditional one. She said it was impossible to see through my dense tissue to clearly make whether I actually had a lump or not. I’d never had that type of imaging before but I was assured that this was the one of the latest technologies that would help me avoid something more invasive.

I took a cab over to the imaging center at lunch and I was immediately called in. I put on nipple markers that looked like pasties and stepped into a machine. I was pulled, pushed and then smashed before my scan was over. Then, the technician asked me to stop by the admitting desk to schedule an appointment for an ultrasound.

Wtf? I thought. What else do they red to do to tell me I’m okay.

I booked an appointment for the following Thursday and headed out into the rain.

Even God is crying, I thought as I bowed my head. He knows how much I’ve gone through and continue to every day. I guess He never said the road would be easy.

As soon as I looked up I saw a Dunkin Donuts/ Baskin Robbins. I took it as a sign. I cautiously made my way over there as my cane slid in the puddles and I picked out a carton of my favorite ice cream: Gold Medal Ribbon. Tonight, I will pray then eat this, I thought. I’ll fall asleep and tomorrow will be a new day.

I was smiling until I realized I had no way to get the ice cream back to New Jersey without it melting. When I returned to work I mentioned my problem to my friend Sixto. He took his dirty Tupperware out of his lunch bag and handed the bag to me.

“This ice should keep it cold,” he said.

He’s helped me lot of times over the years but this time he may have saved my sanity.

#food #nyc #breastcancer #cane #disability #autoimmunedisease #chronicillness #chronicpain #igg4 #baskinrobbins #dunkindonuts #eatmyfeelings

View From The Rooftop

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I couldn’t see the bustling NYC streets from the rooftop at the Empire Hotel, which is near Lincoln Center. I heard the wind whipping, glass clinking, laughter and friendly conversation. I’d ventured just blocks from my workplace after a stressful day writing more stories than I thought I could complete to celebrate Ashley’s 30th birthday.

She’d arranged her own party at the bar on top of a hotel I’d stayed at countless times to cover the news of the day: Superstorm Sandy, snow storms, etc. But, I’d never gone up to that floor before. Today a ventured to a “new place” to cheer Ashley.

A talented newcomer to the TV station, Ashley quickly became a friend. Her brains and talent are impossible to ignore. She also genuinely cares about the service we provide to the public and goes above and beyond to deliver it even when she’s not compensated enough for her efforts.

I didn’t notice the hours flew by as I talked to other co-workers who often don’t get time to get to know from 9:30 to 6:15. I learned and I shared. I soaked up the energy from the endless party. I didn’t think once about my cane, my evening pills, the pain in my hips or my fatigue. I was simply a New Yorker out having fun. Ashley inadvertently gave me a gift at her birthday party. Thank you Ashley. Happy Birthday.

#birthday #lincolncenter #empirehotel #nyc #tvnews #disability #chronicillness #chronicpain #autoimmunedisease

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

Food For My Soul

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My hips burned, the veins in my head throbbed, and my knees cracked as I rose from my bed on Friday morning. When I placed my foot in the floor, I realized sleeping didn’t relieve the ache in between my toes or the balls of my feet either. But, none of this matter, it was time to get ready for work. I thought, I need to get through work to meet my friends to goto our first dinner club event; a monthly home cooked meal at each other’s homes.

I powered through a frustrating nine hours at work that was peppered with a WGAE union meeting, three and a half hours of shows despite computer problems, and learning new software. When 6:40 rolled around, my friends and I hopped into my Fiat and battled rush hour Lincoln Tunnel traffic to Union City, New Jersey.

My friend Sixto opened the door to his apartment and we were greeted by his cat. He warned Cara and Alicia that the cat could turn on a dime and go from sweet to vicious. But, they followed her into the spare bedroom used as an office anyway. I was sitting near Sixto while he cooked when we heard a commotion. Apparently, the cat attacked them and Alicia was shut in the room with the terror. Luckily, she escaped unharmed.

Sixto’s girlfriend Stephanie came home followed closely by another friend, Mike. Our gathering was compete. As wine flowed, a delicious meal with placed before us. We ate, told stories of our youth and did impersonations. We also talked about the plans for our future and exchanged advice on saving money, finding a home and finding love. We just enjoyed each other’s company.

When the meal was over and Mike went home, the rest of us walked up to the rooftop deck and pool that overlooked Manhattan; the city that brought someone from the Dominican Republic, Spain, a Jewish girl from Virginia and a native of New Jersey and New York together.

I could see Weehawken, where I first moved when I came back from Boston. Sixto pointed out his first solo apartment in West New York. We could see our past and our present at the very same time.
The moment struck me. I wondered what happened to that hopeful girl who started her life over despite obstacles. I wondered whether the woman I’d became would take the same risks. I questioned if I’d had surrendered to life rather than embracing it because I let my chronic illness cripple me. These thought raced into my mind because it had been months since I spent a Friday night out; when I didn’t go straight home from work to eat alone in front of the television.

I realized that the gathering with my friends was more than a meal. It was like food to my soul; it rejuvenated me in a way I didn’t know I even needed. It made me feel connected to other people; it made me want to explore and live again.

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Guest at My Own Funeral

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I sobbed as I sat on the edge of my bed reading the comments from family and friends in reaction to my blog post, “Breaking Point.” Dozens of people responded to the pain I felt when I learned last week that I require a second scan to determine if a lump inside my body is the root of my recent leg numbness, fatigue, disrupted sleep, and hair loss.

I didn’t mention my test to anyone other than my fiancé and my friend, Kiada. I couldn’t or should I say didn’t even call my parents because my father was facing a new medical challenge of his own. I thought staying silent would lessen their worry. Yet, as the anxiety welled up inside me, I took to my computer to release my thoughts.

I poured out my mental torment in an essay that, I suspect, caught many people off guard. I didn’t know or believe that many folks would care or they’d be disappointed in me. However, I received posts, emails and calls of inspiration. Instead of viewing my doubts about continuing on as a weakness, I was seen as strong for all that I’ve overcome.

I cherished every word wondering if this is what it’s like to be a guest at your own funeral. I quickly realized it is better actually. I thank God for bringing me back from the brink so I can hear that I’m loved while I’m alive and giving me the chance to say thank you for loving me.

#autoimmunedisease #chronicillness #chronicpain #igg4 #disability #survivor #funeral #prayer #loveconquersall #morethanaconquerer

Breaking Point

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There’s only so much one person can take. I’ve reached my breaking point over and over again.

I’d sometimes look over at the vat of pills on my dining room table that contains enough lethal dosages to kill several people and think I could take an excessive amount and everyone would think it was a tragic accident. My passing would spare my family, friends and myself from the misery of living with a chronic illness; the autoimmune disease IGG4-rd that has damaged my organs and cost me more money that I may be able to repay.

During those moments, I’d wonder what everyone else’s life would be life if they no longer had the burden of caring for me, worrying about my test results and thinking about what they could do to help me. I usually picture a few months of sadness followed by years I relief.

I’d imagine my “stepson”, nephew, brothers and parents spending the money left over after paying off my debts through the sale of my house, car and from my insurance policies. I could see them on the vacations they couldn’t take because they were afraid to leave my side. I could also visualize the relaxed, carefree looks on their faces.

Sometimes, I’d cry, wishing I could experience a life with them without the condition that has come to define my adult life. Other times, I’d drop to my knees and pray for solace.  I never heard the voice of God in response to my pleas but I’d feel a sense of resignation. I’d struggle to my feet, flop down into my bed, pull up the sheets and rock myself to sleep. In the morning, the wonder was still there but the longing to give in would be gone.

I consider the day that the notion that I’ve been defeated by my illness waned as my Independence Day; I’m now free from the anguish of those thoughts. Since then, I’ve made a conscious decision to be brutally honest about my feelings. I’ve chosen to use them and the knowledge I’ve gained from battling for my survival to help others facing those weak moments.

I know that right now my voice in the world is small. I haven’t reach nearly as many people I’d hoped with my blog or my memoir, Misdiagnosed: The Search for Dr. House. But, as long as I’m alive, I have a chance to change that. If I give in, I won’t. So, I don’t.

 

#independenceday #suicide #chronicillness #igg4 #autoimmunedisease #chronicpain #disability #misdiagnosed #memoir #powerofprayer #healing