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

 

I’ll never let my fear of dying (or anything else) threaten my dreams again

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I don’t like to admit that I’m afraid of what my autoimmune condition, igg4 related systemic disease, will do to me. But, the truth is I have often thought that complications from it could cut my life short.  I usually bury the worry using my faith or denial. However, it took control off me in July 2014 and nearly ruined my dreams.

Six months after finishing my memoir, Misdiagnosed: The Search for Dr. House, I was well on my way to publication. I’d gotten a foreword from late comedian Bernie Mac’s widow Rhonda McCullough. I’d gotten reviews from three bestselling authors: Wes Moore, Richard Cohen and Marya Hornbacher. I’d also received three magazine reviews: Publisher’s Weekly, Kirkus Reviews and IndieReader. And, I’d gone over the pages wit an editor from She Writes Press and my literary agent at Serendipity Literary. Then, I learned that I had to have a second stomach repair operation, a Nissen fundoplication redo.  The news rocked me to my core because I’d already endured six lymphoma related surgical biopsies and numerous other procedures in a two year period. My body was tired and so was my soul. I feared I wouldn’t survive.

I prayed about what to do with my book. I remember thinking that I should stay the course. But, I ignored my internal voice. I wrote to my agent and cancelled my contract, abandoned the foreword and decided to self-publish.

My book got lost in the shuffle of the thousands of other self-published titles. The mediocre cover using a stock image didn’t get it noticed.  And, I didn’t have the money or energy to promote it.

I’d rushed it out because I was afraid that if I died no one would ever see it or be helped by story. Yet, by not giving my book the polish and publicity it deserved, I’d failed anyway.

I thought I had no choice but to live with my terrible decision to hurry Misdiagnosed: The Search for Dr. House to the marketplace. Then, I saw a Publisher’s Weekly Booklife contest offering a free book cover redesign.  I wondered, can I salvage my dream of being a successful writer or at least reaching more people with a new look?  I decided to enter the contest.

I couldn’t believe it but I was selected. My book cover was reimagined by a talented artist at Tugboat Design. It was completed the way it should have been from the beginning. I was inspired to reedit the pages to remove some explicit content that readers thought obscured the book’s central point. And, I added the foreword back in. I also made sure buyers could get the book at stores, libraries and online in every form by setting it up on Amazon, Smashwords, and IngramSpark.

Now I have the memoir I wanted. On April 24, 2017 a new edition of Misdiagnosed: The Search for Dr. House is released. I vow that no matter what medical trials I face in the future, I will pursue all my dreams by relying on faith not fear; that way I won’t have any regrets.

P.S. Share this post with those who love a good book, are in need of inspiration, or need a good kick in the butt to stop making excuses and live. If you’ve already read it, please review it on amazon, pass your copy along or drop me a line.

 

#igg4 #autoimmune disease #chronicillness #chronicpain #memoir #death   #fear #BernieMac #RhondaMcCullough #SerendipityLiterary #SheWritesPress #PublishersWeekly #KirkusReviews #IndieReader #WesMoore #RichardCohen #MaryaHornbacher #Misdiagnosis #BookLife

Luck of the Irish

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I wore my green sweater to celebrate St. Patrick’s yesterday, which may have seemed odd because I’m black. But, I’m engaged to an Irishman and I couldn’t be prouder.

Four years ago, when my fiancé proposed he presented me with a claddagh ring symbolizing love, loyalty and friendship and that’s what he’s shown me the last six years. He stood by me through multiple surgeries, six cancer scares, infertility and the financial strain of chronic illness. We’ve endured more than some people have in a lifetime yet we’re still holding on to each other while we co-parenting his son.
Some people have asked why we haven’t walked down the aisle yet. I, generally, feel no need to answer but yesterday I thought about it. The only thing we haven’t done is sign a piece of paper with the state. We’ve exchanged vows to each other in the presence of God. We both wear our rings and honor the commitments that come with it. But, we deserve a party to celebrate all that we are to each other and all that we’ve overcome with our family and friends.
We’ve saved and been forced to spend the money for a wedding on my medical needs over and over again. Yet, I’m confident that the luck of the Irish will be upon us when our “big day” finally arrives. Until then, I think of the closing line from Irish blessing my fiancé gave me the day we got engaged, “until we meet again may God hold you in the hollow of his hand.”

#chronicpain #autoimmunedisease #irish #stpatricksday #chronicillness #marriage #relationships #faith🙏

Can the Memory Of Love Sustain You When Nothing Else Will?

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Can the memory of love sustain you when nothing else will? I learned the answer is yes. My mother, Gloria, and I were making our last Meals on Wheels delivery on behalf of Disney and the Jan Hus Church on East 74th street when we met Rita.

As soon as my mother and I exited the elevator in the eighth floor we saw her waiving us around the corner to her apartment. My mother was limping because of pain in her hip and I was hobbling with my cane due to my broken toes and usual spinal pain.

We walked down the long hallway and said, “Meals on Wheels delivery. How are you today?”

Rita paused and says, “Ah, you know what I won’t complain.”

I replied, “Well, I’m glad you’re inside on such a cold day.”

“Actually I was just downstairs. I had to get something very important in the mail. My landlord wants to force me out of my home after 50 years so my niece and nephew, who are attorneys, are helping me. I’m just glad my husband Harry isn’t alive to see this.”

Rita told us that when she and Harry moved into the building on East 76th Street in the early 1960’s it was considered a Hungarian slum. She figured the neighborhood had changed some but she was stunned to learn that her tiny one bedroom was now selling for 800 thousand dollars. She, however, was not interested in moving.

Rita left us at the front door and rummaged through a pile of papers until she dug out two pictures of Harry. He was a tall, handsome, smiling man with dark wavy hair.

Rita told us they met at a resort in the Catskills in July 1944 when she was just 14 years old. The six foot 137 pound teenager walked up to her and put his arm around her. She exclaimed, “no one puts their hands on me.” Rita says Harry laughed. He never left her side again other than to go to war.

He returned home and became and engineer for Columbia Records then Sony. She worked for comedians like Joan Rivers and Phyllis Diller. She said Harry was so funny people tried to convince him to write jokes for a living. But, she was ill and could only work part time and back then the going rate was five dollars a joke so Harry passed. But, Rita says he never gave up charming and entertaining everyone he met. Even when he was in the nursing home later in his life, Harry got preference over the other residents because he always talked to the orderlies like Jesus and lifted their spirits.

Rita caressed the pictures and said, “Do you believe in love at first sight? I do because Harry saw me and he loved me. I know he did because, once, when he was nearly comatose in a nursing home I said, “You know what Harry we’ve had quite a love affair.” Rita said he got a burst of energy and jumped on the bed like a child with a big smile on his face.

Rita said she sold all of jewelry and nearly everything of value she owned to keep Harry close to her towards the end of his life. “It was worth it,” Rita said. I thought about leaving this apartment after that but I couldn’t.”

“Don’t,” I said. “It’s where you made a life with Harry. It’s home.”

“And, you had more love in your life than most people. You had laughs with Harry to get through the tough times,” my mother said.

“You’re right,” Rita responded. “I never thought I’d need meals on wheels but if it brings me people like you two to talk with about Harry I won’t complain.”

#elderly #nyc #disney #mealsonwheels #loveatfirstsight #randomencounters #love #marriage #chronicpain #autoimmunedisease #backpain

Feeling the End is Near

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“Ma’am I’m calling from the hospital for Special Surgery at your outpatient procedure on June 1st,” said a mysterious woman with an annoyingly cheerful voice. “Did you read the instructions?”
“I did,” I said into my cellphone while keeping one eye on the television on my desk at work; on it was a press conference with Senator Charles Schumer on laser pointer attacks at Kennedy Airport in Queens.
“Well as you know, you shouldn’t take any blood thinners, including Meloxicam.”
“What? I shouted as my eyes darted away from the TV and over to the receiver. “I just took that this morning.”
“It shouldn’t be a problem,” the nurse stammered. “It could cause blood clots but if you stop it now, it should be okay. Just tell the doctor when you get to the hospital.
My mouth hung agape as I heard the line go dead.
I turned to my co-worker with disgust in my voice, “I truly can’t believe a major hospital would forget something that could be life threatening; that’s unacceptable.”
“I agree,” no co-worker responded, “it’ll be okay.”
I went home that day with the thought that a sudden pulmonary embolism caused by a blood clot or some other bleeding trouble after the procedure would kill me. The fear that end of my life could be near because of a careless mistake following decades of struggle cast a cloud of despair over me. My sleep became more intermittent over the next two days as the date of my hospital trip approached. Each night, I was tormented by dreams of choking to death, failing to wake up from anesthesia, ending up in ICU so the machine would have to be turned off, or flatlining on the table.

The third day, the day of my procedure, I woke up without any sense of panic. I had an odd sense of calm that my suffering would be over. Seconds later, I’d thought about the pain my loss might cause my parents, fiancé and co-workers still reeling from the loss of our friend/reporter, #LisaColagrossi.  The notion that I may cause a heartache to those I love and admire temporarily shook me from my funk. Still, at 7 am I was unable to put my feet on the floor. I was paralyzed by a feeling of dread that my life could suddenly end with a stroke of a scalpel and hadn’t accomplished all I wanted to with my life. So, I laid there for an hour then fifteen more minutes before a traffic report, indicating an accident in the Lincoln Tunnel, could make me late to my procedure.

I mustered the strength to put my tingling feet on the carpet. I paused and waited for the pain to shoot down my left leg then cautiously took steps towards the bathroom in my bedroom. I grimaced as I lifted my door over the edge of the tub then I soaps up and rinsed off quickly.
I was out the door, on my way to the east side, when the rain began coming down at monsoon strength, snarling traffic. Despite this, I rushed into the outpatient center only fifteen late. The receptionist complimented me for having an exotic name, MTamanika, before she showed me to a waiting area. I’d just settled into a high stool that made it easier to sit down when the billing clerk called me. We raced through the payment information. The only time we exchanged personal words was when I mentioned had a living will, health proxy and power of attorney at the ready should my procedure go awry. After numerous reassurance my good health was on the horizon, I was shown to a second floor waiting room.

“Is it still raining?” Asked an older woman sitting next to an elderly man.
I responded, “yes it started coming down out there so be careful.”
“Thank you,” she replied while looking at me trying to assess my condition. “Are you here for a procedure today?”
“I am.”
“Well good luck and good health,” she said as she rose to leave.
The reassurance from a stranger made me feel a bit silly that I had allowed one mistake to make me doubt I’d come out of the hospital better than I’d come in.
Moments later, I was ushered to the back where I changed into a gown, hair net and grippy socks. A nurse then came back to check my vitals; that’s when I noticed my blood pressure was 145/120. Over the next half hours, it was checked repeatedly and again and remained high. Finally my doctor was called to my area to decide if I was fit for surgery. He scoffed at the Meloxicam mix up and the blood pressure results and told the nursed to bring me into the operating room.

I limped down the hall to the sterile white room with French music playing. A tech stood with her back to me filling in my vitals on the machine that would change the views of me on the operating table. The nurse who had shown me in dragged over a stood to assist me in climbing up on the table. I laid down on my belly and stuck my face through a pillow with a hole through it. The doctor once again asked if I wanted Ativan to help me relax before we proceeded. I declined.

“Mrs. Beamon you’re going to feel a pinch, then a burning sensation, a bit of pain then pressure,” said the doctor as he prepared to do the first lumbar epidural steroid injection. In spite of the discomfort I didn’t wince or move. I was afraid any sudden movement could leave me paralyzed.

I did have to take deep breaths when he began injections into my s1 joint and the nerves in my left leg. The burning sensation running across my spine and buttocks and down my leg, sent a series of tears down my face. Yet I continued to respond to the doctors commands and detail my level of pain for him. A little less than an hour later, it was done.

I tried to stand on the same stool I’d used to get up on the bed to get down. Unfortunately, my leg was tingling and radiating pain as I stepped. I flopped down in the wheelchair so I could head to recovery.
On the table to my left was a menu card. I’d barely glanced at it when the nurse pulled back the curtain and ask what I’d like. I admitted that I’d been to multiple hospital and never before had I gotten an order card. She just chuckled and walked away to get me a warm blanket. She stretched it across my legs then took my vitals. Concerned creeped across her face when she saw my blood pressure numbers.

“Can you lay back for me and think of your favorite vacation spot?” the nurse said.

The automated blood pressure cuff went off again as I drifted in thought. Unfortunately, my numbers remained unchanged.

“I need to talk to the doctor before we can talk about your discharge.”

I could see her chatting with my doctor when the man across from me proclaimed he was ready to go. A nurse opened his curtain and told him to stand for a final evaluation. When he got to his feet, his legs immediately began to quake.
“I’m sorry sir, you can’t go home like this,” the nurse told the man.

His looked at her with disgust and said, “I have Parkinson’s.”

The nurse didn’t respond. She just brought over a wheelchair.

“Can we all leave now?” Shouted the woman in the bed next to mine. “Does anyone know where my clothes are?”
My nurse pulled back the curtain separating us and said, “We do but we put them away for a good reason”
I thought to myself, of course, so they can’t be stolen.

“We do it so you can’t just leave until we check you out. Some people, especially on anesthesia, think they’re fine but they’re not.”

“I think I’m fine” I interjected, trying to cover up the yellow fall risk bracelet on my wrist.

“Well you can go Ms. Beamon if you leave in a wheelchair and go straight to the main building to get fitted for a cane. They’ll also teach you how to use it.”

I agreed but wondered if the cane was a symbol of my recovery or a further reminder of my decline. I grabbed the prescription for it and headed out into the rain with my mother prepared to wheel me to my final destination for the day. I realized in the short taxi ride that I wasn’t actually afraid of dying. I was preoccupied by the thought continuing to live in pain and needing even more procedures.

Amazingly, having my new cane in my hand put me at ease. I realized the power to every new step forward in my life was in my hands; and with the mercy of God I could put an end to feeling sorry for myself and dwelling on whether my end is near.

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About the author: Nika C. Beamon is the author of the highly praised memoir, Misdiagnosed the Search for Dr. House. In 2009, Chicago Review Press published her non-fiction book, I Didn’t Work This Hard Just to Get Married. She’s also the author of two mystery novels.

A Birthday Wish

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A Birthday Wish

“What do you want for your birthday?” It’s a simple question but one I was afraid to answer. Why? I don’t like asking for things I can’t have; I stew in disappointment.

Still, I thought for a few minutes and gave an honest answer: time. Now, with my birthday just a week away, December 17th, I know that exactly what I want.

“Time?”

“Yes, it’s the only thing I want, more time.”

He knew exactly what I meant. I wasn’t asking that someone play God. No, I wanted to stop rushing around for work, running errands, and going to doctors. I realized I needed time with the people I loves and doing things I enjoyed.

You see last year my wish was to live; to simple exist. For nearly two years, I went to innumerable doctors, had enough X-rays and scabs for my physicians to fear the level of radiation in my body. If you added it up, I probably donated the entire volume of blood in my body. I waited on nearly a half dozen biopsy results, was cut open four times and spent an eighth of my salary, or just about for medical bills and medication.

I suppose it was worth it because I’m still here; still fighting but alive. However, that simple question about my birthday wish reminded me I wasn’t living; I was, am just existing. I keep drifting right back into the lifestyle I had before I almost lost my life.

I thought I’d changed. I was more open with my friends and acquaintances about my illness, thinking I’d have more support. I even say down and did the toughest thing, spilled my guts in a memoir, Misdiagnosed: The Search for Dr. House, about what if faced before last year. I rushed it to market when my agent failed to close a sale or even get back to me most of the time. I do so because I didn’t want to leave this Earth without sharing the message I felt I was meant to deliver; misdiagnosis kill but can be prevented.

I felt like I begged and pleaded for everyone I know to spread the word about my book, to buy a copy or to gift it to someone else. Yet, I watched the sales numbers and emails from strangers and realized the people who were supposed to nearest to me, dearest to me had let me down.

Desperate for the compassion and support I was lacking in my darkest hours, I reached out blogging and email to update my progress or lack thereof. I often got no response.

Disillusioned, I wondered many times over the last year why my life didn’t matter to people Id believed in, helped, and loved. I questioned why I had survived, if I was destined to battle my illness alone. I doubted if I had a purpose.

Every time I was at my lowest a small voice, I say God but you can call it what you want, told me I wasn’t done yet. I had more to do. It wasn’t my time to go. I was wrong. I had a select few people on my life and that’s all I needed.

So, the last time I heard the whisper I decided to let go of those who didn’t supper me in lieu of the few people who did. I released myself from the pressure of sales numbers and decided to do my best sharing my message, no matter what. I vowed to make better use of my time.

Now, all I want this year is more time to share what I’ve learned about chronic illness, life and death, faith and medical mistakes with those who need it. I’d like to figure out how to take more time away from work to be with the people who get and support me and my mission; that loved me even when I didn’t have one.

About the Author:

Nika C. Beamon is the author of the critically acclaimed memoir, Misdiagnosed: The Search for Dr. House, released in 2014. In 2009, her first non-fiction book, I Didn’t Work This Hard Just to Get Married: Successful, Single Black Women Speak Out was published by Chicago Review Press. She’s also the author of two mystery novels.

#MisdiagnosedTheSearchForDrHouse

#ChronicIllness

#BirthdayWish

Wake Up In Pain

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I do my best to thank God for another day before I allow the nagging, gnawing pain in my abdomen, knees, ankles and toes to seep into my consciousness. I’m used to it but still don’t find it less irritating every day to wake up feeling decades older than my years.

I hobble out of bed, unsure if my flat feet will hold u my ever expanding body. Intermittently, I think it would be better if I rolled myself onto the floor then crawled to the shower. In the scenario, the hot water beating down on me would do what it often does; relaxes my muscles, allowing me to move around with more ease.

I could pop one of the pills in my treasure trove, actually a makeup case, filled with pharmacy bottles. Yet, despite their convenience, I try to avoid taking anything until I can no longer ignore my pain.

Most days I manage to dress myself and head off to work without the need for a medical solution to the lightning bolts shooting through my joints. However, there are times when even my hair follicles hurt because my pain has migrated to every nook and cranny it can find. It’s then I wonder, trying to collect my thoughts amid a headache that makes my right eye test, how much more I can take? The answer is evident to me. I’ve already endure more than I could’ve imagined and probably can withstand a bit more.

I do ponder how it’s possible that’s body and mind can overcome sometimes excruciating, torturous bout of pain. I suppose it’s because I tell myself, “this too shall pass” and it does, returning day after day; year after year as I find new phrases and prayers to get me through.

About the Author:

Nika C. Beamon is the author of the medical memoir, Misdiagnosed: The Search for Dr. House. In 2009, Chicago Review Press published her non-fiction book, I Didn’t Work This Hard Just to Get Married. She is also the author of two mystery novels. Beamon is a veteran TV Writer/Producer in New York.