Get It Off My Chest

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I’m don’t mince words often and I’m rarely out of them. If I have something to say I get it off my chest right. But, I was swamped at work when the results of my breast ultrasound came in. I glanced down at my iPhone 7 while the message from my Ob/GYN was being transcribed. It said, “your results are in. The radiologist wants to see you again in six months. I’m preparing your referral. Thank you.” Immediately, all words escaped me.

I saw the four hypoechoic nodules with my own eyes during my scan. They were the dark circles the technician paused over, measured, snapped images of then refused to discuss with me. Yet, I kept hoping I was wrong; that they were so insignificant they didn’t warrant being mentioned in a report.

I immediately signed on to the Lenox Hill Radiology portal and pulled up my report. It described each lump by height and width, as well distance from my nipple. There were two in the left breast and two in the right. On the bottom of the report, the radiologist said they were likely benign but recommended monitoring.

“Likely? What the hell does that mean? I’m supposed to wait six months to find out if some of kind of cancer is present? It may be okay with the doctor to watch and wait, but can I live with that? At least when Lymphoma was suspected I had the six surgical biopsies and I knew what I was facing. I may need a second option or a biopsy just to be sure,” I mumbled to myself. “I’ve spent most of my life since puberty trying to hide my double chest. Now, if the images change they could be gone. I don’t have much of a figure without them. I think I’d actually be sad to see my breasts go.”

I grabbed my cane, subtly rose from my chair and walked over to the printer to collect a copy of the radiology report. I didn’t tell anyone around me what was bugging me. I couldn’t figure out what to say so I said nothing other to answer questions about the stories we were writing for 5:30 and 6 pm newscasts. I completed my work and I laughed just like everyone instead of crying. And, on the way I home I wrote down my feeling to get them out.

#ultrasound #mammogram #chronicillness #chronicpain #disability #lymphoma #tvnews #radiology

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

 

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

Cost of Survival

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$163,270.90 that’s what I’ve paid towards the cost for doctors to keep me alive and as well as I could be the last 15 years according to a note from Cigna.

Before that I had another health plan so who knows what grand total for my care really is, I thought.

My lip quivered as I stared at the update from Cigna following my latest trip to the doctor.

You know what else I could’ve done with that kind of money or the average $9000 I used to pay out-of -pocket each year before the Affordable Health Care Act capped the amount, I thought. I wonder how much more I will pay when Obamacare is repealed. I wonder if my level of care will change. And, I wonder if I’ll be forced to stop dragging myself to work which allows me to be a tax paying member of society. Right now, I work hard despite my pain and have very little to show for it. I get to enjoy very little in this world.

My lip quivered as I stared at the update from Cigna following my latest trip to the doctor.

You know what else I could’ve done with that kind of money or the average $9000 I used to pay out-of -pocket each year before

I crawled up the stairs on my hands and knees to my bedroom as my broken toes throbbed.

I better not fall again, I thought. I might have to sell my house to pay the bill.

I flopped down on my bed clutching the paper that had dampened my mood. I shook my head trying to understand why it costs so much just to survive. Then, I glanced over at the nightstand and spotted a photo of my fiancé and “stepson” with their arms around me.

If I didn’t lay out that money, I wouldn’t be here, I thought. I wouldn’t know the love I have in my life. I wouldn’t have written books to leave a legacy behind. And, I wouldn’t have been able to show anyone that no matter what “cross” you have to bear in life, life is worth living at any cost. #igg4 #chronicillness #chronicpain #backpain #autoimmunedisease #nevergiveup #cigna #obamacare

Number One Thing To Do

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I woke up this morning with no where to go; that’s extremely rare for me. I’m constantly making “to do lists” so I utilize the time I am well effectively. But, today’s list was blank except for: “put your feet up.”

I had to write that down to remind me to not to attempt to use my crutches to wade through the snow and ice on my doorstep to try to get to work.

At 9:30 am, I felt compelled to get up and shower. Then, I stood staring at my closet until I realized I just needed something to wander around the house in. So, I grabbed the pajama set my dear friend bought me the previous night.

I mentioned to him that my fiancé decided we should stay a second night at a hotel near work to make his commute easier. But, he’d taken our suitcases to his car earlier in the day. This meant thatI had no change of clothes.

My friend offered to escort me to Century 21 to pick something out. But, my supervisor arranged for our courier to drop me off at the hotel so I didn’t have to limp through the snow.

I slid on the slush outside the courier’s car at the hotel and fear welled inside me.

Maybe it is best that I don’t go out in this wintery mess, I thought. I might break something else.

As I sat, fully dressed in my hotel room, my friend called. He was coming upstairs to drop something off. He’d gone to Century 21 on his own to pick out the night set for me. He also got a toothbrush and toothpaste.

“I can’t believe you did this.”

“I just wanted make sure you get some rest. Do you need anything else?”

“No, you’ve done more than enough.”

“Okay. Just feel better and rest.”

When the room door closed, I dialed my mother and told her what he did.

As soon as I hung up, I slipped into the pajamas and sat on the end of the bed as my broken toes throbbed.

I have got to put my health first, I thought. I go to the doctor, take my medication but I need to rest more. I have tackle this the way I get everything else done.

I took out my phone and wrote “put my feet up” on my daily to do list. Then, I grabbed my phone and emailed my boss to take the day off.

#tvnews #nyc #backpain #chronicillness #autoimmunedisease