Coming Down From The High

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The adrenaline rush I got as I stepped off the makeshift stage at Pier 95 after addressing the crowd of autoimmune disease sufferers made me forget about the cold coursing through my body. But, by the next day it had faded and life was back to normal. I was coughing, blowing my nose and hoarse. I was also without direction. That speech, that moment was the highlight of years of sharing my story of fighting to identify my autoimmune disease (igg4-rd) and live with the side effects of it.

I was planning on what to do next to reach others suffering from a chronic illness and chronic pain like me when my rheumatologist emailed me. She says tests confirmed her suspicions. I appear to be in remission.

“You do not seem to have any symptoms of IgG4 syndrome- just an elevated IgG4. Please let me know if any symptoms arise and I should see you in 4 months.”

4 months? That’s the longest gap since I’ve seen her in nearly seven years, I thought. I’ve spent the better part of my adult life waiting for the next medical crisis. I’m not sure I know who I am without one. I don’t know what my mission is if not to share my musings on my medical trials.

As the next two days passed, an overwhelming sadness hung over. I felt lost. The thought that my decades of agony may not have had a purpose at all made me cry myself to sleep.

For years all I wanted was to be symptom free, I thought. I wanted to enjoy my twenties, to have children, to have traveled the world rather than visiting hospitals and spending all of my money on drugs and procedures. Now that my body has left me in debt and damaged my condition wanes. Really?

I’ve cried and I’ve prayed both about my relief and disillusionment. I’ve been stumped by little decisions like wearing my hair curly or straight. The only thing that’s calmed my mind is the notion that I should be calm and be still and wait for a sign about my future.

#invisibleillness #chronicpain #chronicillness #autoimmunedisease #igg4 #disability #autoimmunewalk #tvnews #nyc #aarda #depression
#rheumatologist

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Autoimmune Walk NYC

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My praise for Alka-Seltzer cold and sinus and its ability to suppress my cold symptoms enough so I could speak at the Autoimmune Walk NYC 2017 wasn’t caught on camera but the majority of my speech is here:

I can only hope that as I continue to share what I’ve learned will motivate others to find a way to cope with whatever obstacles are in their path.

#invisibleillness #autoimmunedisease #chronicillness #chronicpain Autoimmune Walk #disability #spoonie

Guest at My Own Funeral

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I sobbed as I sat on the edge of my bed reading the comments from family and friends in reaction to my blog post, “Breaking Point.” Dozens of people responded to the pain I felt when I learned last week that I require a second scan to determine if a lump inside my body is the root of my recent leg numbness, fatigue, disrupted sleep, and hair loss.

I didn’t mention my test to anyone other than my fiancé and my friend, Kiada. I couldn’t or should I say didn’t even call my parents because my father was facing a new medical challenge of his own. I thought staying silent would lessen their worry. Yet, as the anxiety welled up inside me, I took to my computer to release my thoughts.

I poured out my mental torment in an essay that, I suspect, caught many people off guard. I didn’t know or believe that many folks would care or they’d be disappointed in me. However, I received posts, emails and calls of inspiration. Instead of viewing my doubts about continuing on as a weakness, I was seen as strong for all that I’ve overcome.

I cherished every word wondering if this is what it’s like to be a guest at your own funeral. I quickly realized it is better actually. I thank God for bringing me back from the brink so I can hear that I’m loved while I’m alive and giving me the chance to say thank you for loving me.

#autoimmunedisease #chronicillness #chronicpain #igg4 #disability #survivor #funeral #prayer #loveconquersall #morethanaconquerer

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

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

Love Amid Lawlessness Cured Me

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Geography has haunted me for two weeks straight: Louisiana, Minnesota, Texas, France and Turkey. Another place meant another tragedy to cover at work; another slew of funerals to write about with dignity and respect. I thought I was doing it all with ease until Friday night I passed out in the middle of texting with my neighbor. When I opened my eyes on Saturday morning to wake my fiancé, my legs were weak, my vision was blurry and my brain felt like it was throbbing.

I laid down and put on my sleep mask. I took several deep breaths as I listened to my fiancé get ready for work. I felt calmer although my whole body had stiffened so much the cervical area of my spine was so stiff I could barely lift my head.

I rolled over and turned on the tv. As the news headlines flashed across the screen, the events I’d written about flashed through my head. I could feel my stress level rising. At the same time, my pain increased. This was the moment I realized my stressful work condition may actually be making me sicker.

I tried to distance thoughts by dragging myself through the house to collect the trash for disposal, start the laundry, and pick up anything that wasn’t in its place. Once that was done and one small errand was run, I headed to the mailbox. By then, I felt hot and faint. So, I snatched everything out and headed inside.

I collapsed on to the bed, swallowed my morning dose of medication, an assortment of nine pills, and began going through the mail. A giant envelope stood out. The return address indicated it was from my friend Karen.


I poured the contents onto the comforter beside me. The first thing I saw was a card drawn by her children that said, “our mommy loves you.” Tears welled in my eyes and a broad smile crossed my lips. Then, I saw a yellow post it. It was covering a bracelet called warrior. The card attached read: “remember that true glory is rising every time you fall… You are so strong, so fearless, so powerful. You are a warrior, stronger than you have ever been.” I sobbed as I put it on and read another card letting me know I was in her prayers.

Silently, I thought to myself I was too blessed to be stressed by work or anything else. I swear, instantly my body felt lighter and my pain decreased. I relaxed back onto my pillow as I listened to Yolanda Adams sing, “Sometimes life can place a stumbling block in your way but you’re gotta keep the faith, bring what’s deep inside your heart yeah your heart to the light and never give up. Don’t ever give up on you. No don’t give up.” I sang along and drifted off to sleep knowing I can never give up because I have faith, love and friendship in my life to lift me up when I’m down.