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🙏

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

Mind Over Body

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Testimony: I swallowed Ativan and waited for my surgeon. As I lay there a nurse tried to insert an IV into my hand but my vein collapsed. Blood covered my hand while I watched her scramble to find something to stop it. Moments later, she came back and placed an IV line in my arm; with that I was ready.


I limped into an operating room and laid on a table face down with my head in a padded hole. This time my arms were strapped at my side, a sterile piece of material covered the back my head and someone held my legs to the table. As pulse meter was placed on my finger and an elf pads on my chest. I felt like I was going to be executed.

I breathed as slowly as I could as needles went into the base of my spine, sending burning sensations across my back, neck, shoulder and chest. When one prick was too much to take a male nurse held my hand. I didn’t cry though. Instead this time I prayed and I drifted to a place beyond the pain. Before I knew it I was done.

Lifting my arm and turning my head shot pain up and down my spine; that is until I put on my stabilization collar. Hours later my weary body drifted off to sleep. And for the first time in two weeks, I stayed sleep all night. I woke and said, “God is good all the time.” Why? Because I was able to get myself to the bathroom without my mothers or fiancé’s help.

I have no fever and my swelling is already down. I’m proof prayer heals so I know my next two procedures will be okay

#MindOverBody #FaithIsTheBestMedicine

A Love That Knows No Bounds

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Testimony: Getting to work on Friday was difficult. The cervical collar and persistent pain my neck and shoulder made it hard to put on my winter sweater, boots and then my jacket. The trouble delayed me so much I rushed out of the house without my engagement ring for the first time in nearly a year. I noticed its absence when I got in my car. I immediately texted my fiancé to bring it to me.

I felt off from the moment I stepped in the office. Tired and overworked, I plugged away at eight voice overs and two packages so I could make it to lunch on time. Ten minutes before I was slated to leave my fiancé walked through the door; he came into the city earlier to surprise me by taking me to lunch.

As we made our way to the lobby, the looks of pity engulfed me. Then, right before the revolving door, a co-worker smiled, hugged me and asked how I was doing. I responded, “fine” and exited the building.

The sorrowful glances were impossible to ignore as my fiancé and I walked up Columbus Avenue. We’re an interracial couple so being stared at is nothing new. This time though, I noticed people examined me with my cervical collar, cane and limp then glanced at him with discomfort.

When we sat down in the restaurant, my fiancé said I looked sad. I tried to pretend I was not. He grabbed my hand and placed it in his and said he loved me. I realize my now obvious afflictions didn’t embarrass him or make him second guess his choice. He proudly held my hand until or food came and walked beside me back to work.

I wear my engagement ring proudly because I’ve been blessed with a love that conquers illness, prejudice and financial strife; that’s evidence of God’s grace and mercy.

#LoveHeals #LoveConquersHate