Why is Discrimination Against the Sick Allowed in the US?

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Why is my life not worth more than a vote to this administration? That’s the question I asked myself when I woke up to the news that an amendment has been added to the bill to repeal and replace the Affordable Care Act. The change doesn’t ensure people, like me, with pre-existing conditions will be able to keep or get health coverage.

The Amendment crafted by a Republican Congressman from my home state of New Jersey allows states to seek individual waivers. One could end continuous coverage and give insurance companies a year to write policies that consider a person’s medical status. Does anyone really think this won’t raise the cost of plans?

The amendment also doesn’t address what sick people are supposed to do while they wait for coverage. What happens to their bodies during that time?

American medical experts says sick people will get second class care if any at all. Why is it acceptable for chronically ill people to be forced to become second class citizens in their own country?

Earlier this week, more than 200 members of congress came together to reintroduce the Equality Act. It’s designed to protect LGBTQ rights; to stop discrimination against members of that community.  Where’s the bill for the chronically ill?

When the Equality Act was proposed again, I heard passionate speeches about attacks by the Trump administration on the rights and values of Americans. Congressional leaders said action had to be taken to protect vulnerable citizens. Aren’t the sick, the weak and people suffering from mental or physical ailments in need of the most assistance and protection in this society?

Republicans are thrilled the new healthcare bill may pass in the house today. But I wonder, will their glee over a political victory be consolation to my parents and the loved ones of other sick people as they waste away from illnesses they can no longer get treated?

 

 

#paulryan #obamacare #Kimmel #Trump #PresidentTrump #Congress #ACA #ChronicIllness #AutoImmuneDisease #Igg4 #ChronicPain  #RightToLife #Healthcare #healthcare reform

New HuffPost Blog: Am I Too Ill to Wed?

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From the second my fiancé slid a ring on my finger on Christmas Day three years ago, I wondered if it was fair to him for me to say yes. My doubt had nothing to do with whether I loved him; I was certain I did. I wondered if the autoimmune disease that damaged nearly every organ and joint in my body made me too much of financial and emotional burden to be anyone’s bride.  Still, I said yes and started planning like any woman would.

Of course, the first thing I thought about my dress. Up to this point, I’d only ever loved one dress, Bijou by Amsale. But, with a price over $8,000, I knew I couldn’t afford that and a reception so I tried to get it out of my mind. For days, I was melancholy thinking about how much money is spent on my various medication, procedures, surgeries, scans, x-rays and doctor visits over the years; that left me with little or no money to shell out for a wedding. Yet I was optimistic that I could work and save up the funds.
To read the rest of the essay, click on the link below:

http://www.huffingtonpost.com/nika-c-beamon/am-i-too-ill-to-wed_b_8272368.html

Laughter Through the Pain: A Tribute to Bernie Mac

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It’s said that laughter is the best medicine. So it’s no surprise that after a particularly challenging flare up, of what I now know to be the rare autoimmune condition igG4 related systemic disease, I turned to a bootleg copy of the newly released Kings of Comedy for relief in 2000.
I was mildly amused until Bernie Mac came out. He didn’t just tell jokes, he told stories laden with humor; that’s what had me hanging on his every word.  The only paint I felt during his set was my sides aching from laughter.
Like millions of Americans, I went on to watch his show. But, I saw things many others may have missed. As a person taking prednisone to keep my condition under control, I was aware that he looked like me. What I mean is he starting to develop “moon face;” the kind of bloating associated with the steroid prednisone. I didn’t know what was wrong with him but I knew there was something.
I became a fan. I watched him play supporting parts in movies like Bad Santa and I yearned to see more. Sadly, there wouldn’t be much more. My mouth hung agape like nearly everyone else when I learned he died at age 50 of Sarcoidosis.
I unfortunately knew way too much about Sarcoidosis. For years, I underwent repeated chest X-rays as doctors tried to attribute my symptoms to that disease because it’s prevalent in African-Americans. I didn’t have it but unfortunately he did.
Nearly six years after his death, when I was writing my memoir about my own battle with an autoimmune disease, I reached out to Bernie’s widow Rhonda McCollough. She did know my story but she knew the havoc his condition wreaked. I shared my manuscript with her and she kindly agreed to write the forward to my book, Misdiagnosed: The Search for Dr. House. In it, she discussed her fight to get Bernie to keep him alive.  Although, she couldn’t save her husband, she wanted to save someone.
Unfortunately, when another surgery made me doubt my survival I put out my book without her forward. But, I remained in touch with people from the foundation Bernie established to educate about the disease that robbed the world of his talent.
So, in honor of what would’ve been Bernie’s 58th birthday, the Bernie Mac Foundation is asking everyone to wear purple on October 5th. Purple is the color of Sarcoidosis awareness. I’m going to wear it; that’s the least I can do to repay him for all he gave me. How about you?

About the author:

Nika C. Beamon is a journalist working in New York.  She is the author of the memoir, Misdiagnosed: The Search for Dr. House, about her 17 year journey to find the right medical diagnosis while balancing a relationship and career.

In 2009, Chicago Review Press published her first non-fiction book, I Didn’t Work This Hard Just to Get Married.  She is also the author of two mystery novels, Dark Recesses and Eyewitness.
#BernieMac #Sarcoidosis #autoimmune #NikaBeamon #health #BlackTwitter

New Huffington Post article: Sick and Single, Who Will Care for Me?

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Sick and Single, Who’ll Care for Me?

A wave of relief swept over me when, at my first appointment to a new rheumatologist, she said she had a name for the elusive condition that threatened my life and sickened me for more than a decade and a half. I now knew, for certain, that I was right; all of my symptoms were tied to just one disease. However, my joy was short-lived. Seconds later, I was told that the autoimmune disease battering my body, igG4 related systemic disease, had no cure.  As a single woman, I wondered, who would care for me if I could not?

At that time, I lived alone in a townhouse, in a city where I knew no one other than my next door neighbor.  My home had stairs, slot of them, which often, pain would not allow me to climb. I worked full-time to maintain health insurance and prescription coverage. My job also allowed me to try meeting the debilitating obligations of my never-ending medical bills because there was no one else providing me with financial support.

To read the rest of the article, click on the following link:

http://www.huffingtonpost.com/nika-c-beamon/sick-and-single-who-will-care-for-me_b_8178426.html

Prepared to Die. Are you?

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I’ve been preparing to die since I was 29. After all, I’ve come close a few times and a lot of doctors didn’t give me much hope that I’d live to see old age. Why? I have an incurable autoimmune condition, igG4 related systemic disease. It makes me vulnerable to heart disease, diabetes, infections and potentially fatal organ failure.  Despite the prospect of a lifetime of pain and procedures, I’m not thinking about killing myself like Brittany Maynard. However, like her, I am worried about dying with dignity.
The thought of passing on to what I believe to be the afterlife doesn’t frighten me. My main concern is how others would cope with it. But, at least initially, I didn’t know what I could do to make it even slightly easier on my loved ones.
I realized my parents taught me the things I needed to be a grown up: how to drive, pay bills, help others, etc… My bosses taught how to strive to be clear, concise and informative. My friends taught me how to get through good and bad times without crumbling. My doctors taught me how to be responsible for my health and medications; ultimate how to fight to live. My faith taught me how to prepare my soul to meet my maker. Yet, no one taught me how to prepare to die. I learned that on my own.
I began educating myself about dying after I survived hemorrhaging in a strange apartment on a first date. I’d loss some much blood, the bathroom looked like a crime scene and the two pair of pants, mine and his, were saturated.  By the time, I made it to the hospital I was cold, weak and drifting in and out of consciousness. I’d hemorrhaged before but never had I come so close to dying; unfortunately it wouldn’t be my last dance with the grim reaper.
I didn’t fully comprehend the magnitude of my near misses; that is until I saw the look on the face of my parents becoming more worrisome year by year. I quickly determined, if I had to die before them, I didn’t want them to have to worry about the arrangements, my debts or my medical wishes.
So, when I purchased my home a year later, I bought enough life insurance to cover the mortgage. Sure, I already had coverage through work but I wanted a policy I could maintain if I got too ill to work. I made sure to get it before I reached an age where I had to meet a medical requirement.
It was clear to me what to do next. I hired an attorney to draw up my will. I listed all of my accounts, designated beneficiaries and even spelled out who gets what possession in my home. I also added a side letter detailing my desire for funeral plans. As a single person, I knew without a will the distribution of my assets would be decided by Surrogate Court in New Jersey.   I’d worked too hard under difficult circumstances to let a stranger decide who gets what I accumulated over my lifetime.
Next up, I completed a health proxy. I selected the person who is responsible for making health decision for me when I cannot. My living will was crafted to list what kind of medical interventions I’d want, including life support, feed tubes, etc… Then, I had to make one of the hardest decision, who to give power of attorney; the person who’d have immediate access to my accounts to pay my bills while I was incapacitated.
Now that all my documents done, I am, at least on paper, prepared to die because I know all my affairs will be handled just the way I want. But, in reality, my hope is that death doesn’t come for anytime soon. I yearn to prove my doctors wrong by living a long and as healthy a life as I possibly can. And, my greatest desire is to spare my parents from having to bury their child.
About the author:

Nika C. Beamon is the author of the memoir, Misdiagnosed: The Search for Dr. House, about her quest to get the correct medical diagnosis. In 2009, Chicago Review Press published her first non-fiction book, I Didn’t Work This Hard Just to Get Married. She is also the author of two mystery books, Dark Recesses and Eyewitness. Beamon is a journalist working in NYC.

Marking Time

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I mark time differently than nearly everyone I know. I record the procedure free days, pain-free days, gaps between filing prescriptions and the time between doctor visits. I jot down the days I can get out of bed, the half-days I spend out and about before crashing, and the days I almost forget that I’m chronically ill.

I count the days go for a walk rain or shine, cherishing every moment I can put one foot in front of the other. I remember the times I make it to an event an hour or more from my house because often I have to pass on attending them. I often lay down at night, recollecting the time when my life was carefree.

I proudly shout my age and embrace my birthdays because I know how difficult it’s been to get from one to another. I rejoice with the passing of every new year, thinking about how many times doctors told me I wouldn’t see another one.

I celebrate milestones I’ve had twice in my life like learning to walk again, sit up unassisted, feed myself with choking, and driving a car long distance without having to pull over. I’m grateful for every day because I get to praise God for opening my eyes, for all that I have, for the air I breathe, for the drugs and doctors that keep me alive, and the people I love and who love me back.

About the Author:

Nika C. Beamon is the author of the memoir, Misdiagnosed: The Search for Dr. House, about her 17 year quest to get the correct medical diagnosis. In 2009, Chicago Review Press published her non-fiction book, I Didn’t Work This Hard Just to Get Married: Successful, Single Black Women Speak Out. She is also the author of two mystery novels.

#women #health #ChronicallyIll