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

 

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🙏

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

Wash Away The Pain

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I turned on the shower early this am so the water could drown out my tears. The hot water flowing across my shoulders relaxed me, if only for a few moments. I wanted to scream, shake my fists to the heavens or falls to my knees. But, I couldn’t decide which one to do so I cried. No matter what I did, I couldn’t ease my pain.

I kept thinking about the harsh words from someone I love that wounded my souI so deeply I’m not sure it will ever heal. I could see my father’s face in the hospital as he tries to be brave amid heart trouble. I could see my mother acting as the rock while I know she must be racked with fear like me. I glanced down at my broken toes and bruised arms from the crutches I’m using to get around and thought about the money yet another illness will cost me. I stared at my body riddled with scars from more than 25 procedures because my autoimmune condition and thought, how much more can I take?

I stood under the shower head until my face was only wet by the water coming out from it. Then, I silently prayed for God’s guidance. By the time I stepped out, I had no answers but I was a bit more calm because I’d gotten my pain and fear out and I felt a bit less lonely. All I could do is dry off and begin again. #autoimmunedisease #chronicillness #faith🙏 #backpain #nevergiveup #family #igg4

When I Blow Out My Candles

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I watch the flicker of the light for a few minutes while everyone sings. It’s so mesmerizing, I can’t hear anything around me other than the sound of my own breath. I stare at the fire as it dances playfully, almost taunting me as it reminds me that another year has passed. I close my eyes for a few seconds before I inhale and blow out my candles. My first thought: how many times I felt like the span of my life was as fleeting as the length of time a candle stays lit. Doctors told me I wouldn’t make it this far. Others reminded me time and again how close and how many times I was near death; it was so frequent, sometimes, I felt like I was on borrowed time.

My second thought is often about how I proved my numerous physicians wrong. I have valiantly faced every obstacle placed before me. I’ve literally learned to walk, talk, see and hear again as an adult thanks to a body ravaged by an autoimmune condition.

Once I clear my mind, I think about what I should wish for. I suppose, my friends, family and even strangers would guess I’d ask for better health but I never do; although I often hope for greater gap between my flare ups and hospital visits. I don’t ask for a longer life either but I do end my wish by thanking God for the time I’ve had. Sure, I should probably ask for more sales for my books so I can pay medical bills, take a vacation or just give myself some relief. But, I don’t do that either. I’m just grateful that I’ve sold enough copies to know someone other than people who know me own my work.

No, actually, when I blow out my candles I make the same wish every year. I’m not superstitious so I can share my real request. My wish is simple; it’s that I am remembered for making a difference.

I’ve long suspected I may not outlive my loved parents, siblings or most of my friends. I’ve only prayed that I live as long as I can, as well as I can and love as deeply as I can. And, I pray that I am the best daughter, sister, aunt, friend, co-worker, fiancée, and human beings I can. Of course, I do occasionally fall short. Still, I try to continue to better at all roles.

So, in the same spirit in which I live my life, I don’t just hurl my wish into the universe and wait for it to be fulfilled. I work hard to create memories, to volunteer my time, to be there for loved ones and to craft stories that tell my life story. I don’t do it because I think I’m particularly remarkable but I know my journey to being at peace with my mortality, my illness and my faith are all things that may help someone else facing similar circumstances.

On Dec. 17, when I go to blow out my candles again I will again re-examine my master to do list, which contains all the things I want to accomplish in this life before I go. I know I’ll be able to check off a few more things. Then, I’ll stare at the delicate flames, close my eyes, say thank you for all that I have and wish one more time that someone, anyone, will remember I was here and feel my loss because I made a difference.