A Love Letter To My M.F.F. (Mother and Friend Forever)

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I’m her first born, her baby girl, her only daughter and I am the sickly one. My twenties and thirties were a disaster. The autoimmune condition that frequently tortures me nearly claimed my life on several occasions. Each time, my mother rushed to my side and nursed me back to health. I felt guilty. I thought I was a burden. But to her, she was simply being a mother to me; a job that would never end. 

Thankfully, over the last year my medical issues have lessened, giving mother and I the ability to just enjoy together. Recently, we chatted as we sat across from each other while eating a lunch after a morning volunteering together. We talked candidly about our relationship woes, difficulty with the children and our medical problems. No topic was off limits. No judgment was passed. We simply exchanged advice, observations and offered support like two girlfriends would do.  

As we walked back towards my car, the lyrics to a song popped into my head:  

“I’ll always love my mama

She’s my favorite girl

You only get one, you only get one, yeah

I’ll always love my mama

She brought me in this world”

I realized the woman beside me taught me how to be a caregiver, to give back, to be a good partner and to pray when all else fails.  She wasn’t just my mother, she was and is my friend. She’s my M. F. F. (Mother and friend forever)

#mothersday #family #love #autoimmunedisease #caregiver #friends 

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

Can You Spot The Chronically Ill Woman?

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Can you spot the chronically ill woman? I bet you can’t. Looking at me, smiling with my co-workers, you may not realize it but I have arthritis all over my body; that’s a term people think they understand. All it means really is that inflammation has worn away the joints in my neck, shoulder, and now my knees and hips. It’s robbing me of my flexibility, my stride, my stamina and occasionally my smile. (I don’t let anything steal my joy for long.) I stretch through the pain, walk with the ache, climb and ignore the burn and rest when I can.

I wasn’t shocked to learn arthritis has spread in my body at the doctor this week; I could feel it. Also, I know my autoimmune condition, Igg4 related systemic disease, causes chronic inflammation. I don’t blame the parts of my body for bring worn out; I’d assume anything that’s constantly under attack would feel the effects.

Despite this, my mind tells me it won’t give up; it won’t give in. And, that means I continue to fight for my mobility, my health and therefore my independence.
#nyc #coworkers #NeverGiveUp
#AutoimmuneDisease #ChronicIllness #BackPain

Learning to Walk a Second Time Sucks but I Won’t Quit

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It’s sometimes wish i could go back in time before my autoimmune condition ruled my body. Obviously, I can’t. Instead, I must re-learn how to do what used to simple tasks like walking.

I’ve watched my friend’s children, without much warning; decide to test out their legs by pulling themselves up on heavy furniture. They’d use their cubby legs and tiny feet to cautious navigate around rooms all while holding on to something or someone. Then, when their confidence hits its peak, those babies let go and walk on their own. Sure, they fall, and do so regularly, but they get up effortlessly, seemingly with no pain or fear. Oh, how I envy them.

I learned to walk the first time like most children. But, shortly after I turned forty, the steps I took became increasingly more uncertain. I had no way to know that a couple of year later inflammation, vertebrae and nerve damage would make my legs spontaneously go out.

At first, I’d chalk up the brief intervals my legs wouldn’t work on fatigue, overuse from exercise or shrug it off as a fluke. I could because within hours, at most a day, if be able to walk again. However, my fear grew when my legs would spontaneously give our while in use when I was outside. The worst moment were falling in busy intersections in both New York City and Manhattan.

Still, amazingly, I delayed getting treatment until one day I woke up and could see my legs but neither of them would move. When my fiancé tried to lift me, an inexplicable amount of pain shot up and down my spine and tears ran down my face.

I raced to the a bone and joint specialist for help and was told issue in the lumbar and cervical region on my spine, as well as the S1 joint, would best be addressed with spinal fusion. The idea of having someone insert metal into my spine that would permanently restrict my movement immediately evoke thoughts that is become the tin man from the Wizard of Oz. So, I scoured the Internet and decided based on its ranking, the Hospital for Special Surgery was my only hope.

I found a pain management specialist who painstakingly administered injection, along with pain pills. I mistakenly believed they’d get me going right away. In addition to the fevers, the pain and nausea intensified for an average of five days. During that time, my mother or some other loved one would have to drive me around, change my ice packs, help me stand, sit, dress myself and go to the bathroom.

Inevitably, I’d take tentative steps on my own while first leaning on a walker then a cane. Yet, using my legs only seemed to bring back the pain, causing me to hunch over and drag my ailing limb.

It didn’t take long for my doctor and I to realize something else needed to be done up give me back my mobility. The solution: radio frequency ablation; that’s when the nerves in my spine are burned or scarred to lessen the pain. Did I mention this was done under minimal anesthesia while I was awake? I also got more steroid shots in my shoulder and sciatic nerve that were now irritated from learning my weight, awkwardly on the devices helping me to walk.

Getting through the procedures was the easy part. I was not longer fearless like a toddler. Every step caused anxiety to swell with me. I didn’t wonder of my legs would fail again; the questions were when or where. I feared pain electrifying my body if I walked more than a block. I didn’t giggle or bounce back up like a baby when I tripped, slipped or fell. I’d shake and lie back down or stay in my chair at work, sometimes missing lunch, until I could mentally prepare myself to try again.

Nearly a year after my journey to learn to walk again began, I am gaining more confidence and letting go more. I watch my steps now though. I still carry my cane, although I use it sparingly. I stop walking when I get tinges of pain and I sleep with my muscle relaxers and pain pills by my bed. Why? I know the procedures I had are only temporary and my legs will fail again. I will have to learn to walk a third time. I’m confident I will because I won’t quit.

Originally published on the Huffington Post on 3/2/2016:

http://www.huffingtonpost.com/nika-c-beamon/learning-to-walk-a-second-time-sucks-but-i-wont-quit_b_9365884.html