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

Putting My Feet Up

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I was hurt and afraid when my supervisor/friend called this morning to tell me not to brave the storm in my crutches to get to work. I appreciated the concern but I was afraid it was the first indication that the autoimmune condition which led to the fall that broke my toes was start to make me disposable at work or making it appear I couldn’t keep up. I was hurt because I wondered if this was the first of many injuries that would allow my illness to halt my plans and dreams. But, by one pm I gathered my crutches, my fiancé grabbed my bag and he cautiously guided me to work. I contributed to the snow coverage on air and I felt renewed. The truth is I’m too damn stubborn to let anything stop me. #chronicillness #autoimmunedisease #backpain #nyc #tvnews

Open Letter to the President-Elect: My Life Is Worth More than Politics

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9:45 am, I limped over to my desk and began working on coverage of President-Elect Trump for the second day in a row. By 12:30, I had turned two reporter packages and written and edited nearly a half dozen anchor voiceovers. Then, it was time to hop into a cab for one of my nearly weekly doctors’ appointment. This time, the specialist was at the Hospital for Special Surgery.

Years of chronic inflammation caused by the autoimmune disease igg4 related systemic disease had taken their toll on my knees, spine and hip, as well as several organs that have either been repaired, required biopsies or rely on some medication to deal with the damage. And, walking had become nearly impossible at one time but innovative treatments like burning the nerves, steroid injections, and knee injections, along with physical therapy and pain meds had just about restored me to my previous form with a cane.

After an hour at the doctor’s office, I was done and it was time to return to work to write about presidential politics and the rest of the news of the day. Chaos kept me from thinking about the policy change the President-Elect vows to make to so-called Obamacare kept me up on Tuesday night. For hours something my grandma Nettie used to say played in my head, “those who do not listen shall feel;” meaning people who don’t pay attention to what’s going on around them will suffer the consequences.

Had I or any other chronically ill person done enough to voice our outrage over plan to scrap so-called Obamacare? I hadn’t. The thought that I’d done nothing to make sure that a plan that preserves my independence is retained haunted me. So, as soon as I completed my last story I hit the keyboard again to draft a letter to my senators Booker and Menendez and Congressman Donald Payne, Jr. to see what can be done to preserve the portions of the Healthcare Act that have made it possible for me to live, work and thrive despite a sometimes debilitating autoimmune disease.

These thoughts played repeatedly in my head: I cannot go back to paying taxes in a society where, because of the ailment God gave me, I cannot buy health insurance. I cannot worry about getting cut off insurance if the treatment I need cost over a million dollars. Nor, can I go back to paying nearly every cent I earn on health care because there’s no cap on out-of-pocket expenses. I refused to be forced onto disability or into subpar health facilities because that’s the only way I’ll be able to survive without some of the terms of so-called Obamacare. And, the truth is that’s no life at all and not a life I want to live.

A flood of questions ran through my mind too like: If more competition, lower premiums and greater coverage is the aim of repealing the law that’s fine but does throwing out what does work make sense? Why not scrap this so-called Obamacare before another is ready to go? Does it make sense to leave millions of citizens in the lurch while you try to come up with something? Why hurt the very people trying to make America great by requiring less government services by standing on their own two feet? Why is the average American entitled to less medical care than senators, congressional leaders or the president and his family? More importantly, I wondered, why deny hardworking Americans the right to life in the name of politics? I deserve better so I will fight for it like I battle for my life every day. I’m not ready to die yet so I won’t let anyone take away my health care options easily. Will you?

Originally published in the Huffington Post: http://www.huffingtonpost.com/entry/5824a5fae4b0edfa13936169?timestamp=1478797289257

Chronically Ill Person’s Call to Action

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Chronically ill person’s call to action to Americans and President-Elect Trump

Heartbroken isn’t how I felt when I learned who America had selected as its 45th president; the emotion that struck me was fear. As a chronically ill woman the notion that I might lose my access to the quality medical care that has kept me alive and functioning was crushing. Now, let me say, there are many aspects of so-called Obamacare that I am not a fan of and need to be changed like more options and lower premiums. However, there are crucial aspects that must be preserved: no lifetime maximum, no refusal of coverage due to a pre-existing condition, yearly caps on out of pocket costs, and the extension of age that children can be on their parents’ plans. Without these measures one illness can destroy a family. I know. I’ve been on the verge of bankruptcy many times but I’ve battled back, kept working and fighting to continue to be a productive member of society rather than living on the government rolls.

 

So, I say to you today, whether you have an autoimmune disease (igg4 related systemic disease, lupus, MS, Rheumatoid arthritis, sarcoidosis, sickle cell, etc…) or a more common condition like diabetes, heart disease, asthma, etc… make the next President aware of the needs of chronically ill people and all citizens in this country who don’t to watch these selves or their children die because health care is out of their reach. Get Cancer and you may not survive because you don’t have access to the best treatment; the kind the President-Elect has for himself and his family. Hold him accountable for keeping what matters most to you. Don’t allow yourself to become so disillusioned you refuse to stand up for the basic human right to life. You see without proper medical attention, I won’t have a life! Without it I won’t be able to contribute to making America great. I’ll just be another burden on society and no one wants that, especially me. So, stand up! Speak up!

#chronicillnes #chronicpain #autoimmunedisease #donaldtrump #nevergiveup #makeamericagreatagain