Worth The Ride

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Yesterday, I smiled hearing a friend’s story about Oktoberfest in Germany. I laughed walking to two former co-workers. I rejoiced over extra time with my fiancé. But I grimaced on the walk home from pain in my hip and lower back. When I got in bed, I saw a new 5 star review for my memoir: Misdiagnosed: The Search For Dr. House on Amazon. Lesson: life is full of high and lows but it’s worth the ride.

Here’s an excerpt:

“Beamon does a good job at describing the utter agony, frustration, and day-to-day struggle of her search for the answer. Misdiagnosed… is a great read and comes with great resources so that others will not fall victim to being misdiagnosed.”

 
Full review:
A guide for folks to find the right doctor.

ByJason L Huffon October 6, 2017

“Misdiagnosed: The search for Dr. House” by Nika C. Beamon is a story about a young, successful, African-American woman who by her mid-20s/early-30s was falling apart on the inside, and no doctor could tell her exactly what was wrong with her.

Each doctor seemed to not want to state that they had no idea what was going on, instead they continually misdiagnosed Nika until she finally lead a search to find someone who could tell her what was going on.

The book is a mildly paced, interesting, and often times heart-breaking tale. It goes through highs and lows battling one diagnosis after another with different medications, treatments, and surgeries. Beamon does a great job at leading the reader on the chase with her to find out what is going on and doesn’t reveal too much too soon.

A couple issues I had was: the time jumps, they seemed to not be too coherent as to when exactly things were happening as we fast-forward through some major events in her life. Like one minute we are with Bryce in Harlem with a near-death scare to a book signing some odd time forward that was never clearly defined. However, it doesn’t really detract from the book as a whole, it was just mildly distracting trying to place ‘when’ we were.


I did enjoy reading about how her lovers helped her, and how they supported her and her battles with one of their infidelity. I also enjoyed figuring out what was going on with Beamon. I shared her frustration at a boyfriend who was unfaithful, her struggles with wait times, finances, and wasting time.


Beamon does a good job at describing the utter agony, frustration, and day-to-day struggle of her search for the answer. Misdiagnosed… is a great read and comes with great resources so that others will not fall victim to being misdiagnosed.

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Reason To Smile

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It shouldn’t take a day on the calendar like today, #worldsmileday, to get each of us to smile every day. There’s so much to be grateful for that should cause a grin.

Every morning I thank God for my ability to walk, talk, see hear, breathe and just be because I know I didn’t have to wake up. This morning, I smiled when I woke up next the man I love, realized it was Friday, I wasn’t in a lot of pain for the first time in 3 days, and my family and I were about to take a weekend trip together.

Yesterday, a co-worker I hadn’t seen in a while brought candy in the shape of a happy face, my mother told me she loved me, I wrote about happy news and I made it through another day. Those were all great reasons to smile.

It’s hard for me to find my smile some days but I try. I smile through the pain caused my condition, the procedures its triggered and the difficulty walking because faith tells me suffering only lasts for a day. I smile through the loneliness because with God in my heart never alone. I smile through the aggravation and stress of life because the alternative, frowning or crying, wouldn’t make things any better. A smile on my face gives way to joy in my heart.

So, can’t you find a reason to smile today?

#chronicpain #noexcuses #worldsmileday #chronicillness #invisibleillness #autoimmunedisease #igg4 #faith #smile

No Day But Today

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Author Napolean Hill says “A goal is a dream with a deadline.” I believe that’s true. Instead of saying someday I will, I’ve decided to set goals to reach for the next 90 days. Why? The alternative would allow my fear of relapse to keep me from moving my life forward. And, it would enable the fact that I have an autoimmune disease (igg4-rd)to limit my future. No way!

1. Set a publication date for my book, Chronic (formerly named Healed) in March (Autoimmune awareness month). I’ve submitted to publishers and gotten notes that ‘memoirs by people who aren’t famous don’t sell. Even one copy is a victory to me. I will release it so that all people who live with an autoimmune disease, relapsing disease or chronic illness/pain will know that it is possible cope with a medical ailment that cannot be cured.
2. Register for a course to complete another degree I started a long time ago (pave the way for a new career as a teacher/professor or whatever I chose). I’m certain not to old to learn. I read and share newly acquired knowledge every day at my present job.
3. Plan a trip that’s more tha a week long with my family (time is precious and want to spend it with those I love.)
4. Begin the adoption application process (I’ve always wanted to be a mom and this maybe the only way for me to do so)
5. I’ll stand on my own two feet and take a long walk without the assistance of a cane for the first time in two years. January 15th is the end of my chosen 90 day period. All of my restorative procedure will be complete.

When I finished my list the lyrics to one of my favorite songs from the musical, “Rent,” popped into my head:

“There’s only now, there’s only here
Give in to love or live in fear
No other path, No other way
No day but today”


There is no way I can justify not accomplishing my goals. I prayed for this respite for decades. I had procedures, saw doctors, and took pills to get to this point. I fought for the chance to succeed, to thrive, to live my dreams. And, I will. No Excuses.


#spoonies #disability #invisibleillness #autoimmunedisease #igg4 #aarda #chronicillness #chronicpain #noexcuses #rent #NapoleanHill #stephenhawking

No Nonsense. No Excuses. No Limits

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“What do I want to do now?” I asked myself as I clutched my doctors letter saying I’m presently not showing any acute or severe symptoms. I’m not cured of my autoimmune disease, igg4-rd, but the lack of new organ or lymph node inflammation or new aches or pains means I am in good health for me.

I don’t know what to do; that’s all I kept thinking as the days passed. Then, an old college friend reached out to me and suggested I make a to do list for the next three weeks, three months and three years.

It took me nearly a week to finish my first to do list.

1. Start to repair the damage done by my conditions: get knee and hip injections, finish radiofrequency and nerve blocks for lumbar and cervical regions of the spine. (Give myself the ability to walk without pain or numbness.)
2. Apply for Princeton journalism fellowship (see of teaching is my next career move)
3. Go on vacation with my mini family (take my “stepson” to Kalahari for his bday and have great quality time with my fiancé)
4. Finish editing my new memoir about coping with chronic illness (share what I’ve learned about how faith, gratitude, testimony, music, prayer, love and mantras can heal the soul and make illness livable)
5. Address adverse work conditions (try to work out arrangement at work to reduce my stress and anxiety to reduce my risk of relapse and improve my mental health)

I took action on my list right away. I drafted an email to my boss, booked a mini getaway, hired an independent editor for my book, and scheduled my procedures at the Hospital For Special Surgery.

As I left for the first procedure, I stared in the bathroom mirror at work and repeated, “No Nonsense, No Excuses. No nonsense will deter me from making it through my list or anything else. There are no excuses for not exhibiting the strength and potential others see in me.”

#spoonie #disability #invisibleillness #autoimmunedisease #igg4 #chronicillness #chronicpain #noexcuses #nononsense

The War Against The Sick And The Poor Is The Biggest Threat To The US

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You couldn’t miss the barrage of threats President Trump hurled during his United Nations speech. They were directed at North Korea, Iran, Syria and other countries he says oppress their citizens and strips them of their lives and liberties. He said these countries and their ways of life are the biggest threat to the US but I disagree.

I insist that it is the war being waged on the poorest and sickest Americans who are covered by Medicaid, get Planned Parenthood Services or who are insured only because the Affordable Health Care Act prevents the exclusion of people with preexisting conditions from coverage that threatens this country’s stability. It is dividing the nation between the have and the have nots.

If passed, it will make more Americans disgruntled with government, claim more lives than recent wars and show the world how little regard the US has for the welfare of its own citizens. It is the repeal of the ACA that, “threatens the entire world with unthinkable loss of life” more immediately than North Korea’s nuclear arsenal.

The President did not bring up the quiet push of his party, the Republican Party, to go after the most vulnerable Americans with the latest healthcare repeal bill. It will leave millions without coverage, raise premiums for millions of others, increase out of pocket costs, strip away subsidies for the poor, and remove preexisting protections for the chronically ill. If approved, this will make The President and Republicans responsible for killing millions of their own citizens just like the leaders President Trump says must be stopped.

The President also touted America’s contribution to healthcare saying the US has “invested in better health and opportunity all over the world.” But, he neglected to discuss his and Senator Lindsey Graham‘s decision to end this country’s investment in healthcare for all. Certainly there is a need for it here.

Hopefully, Republicans will heeds the President’s words at the UN and realize, “It is entirely up to us whether we lift the world to new heights or let it fall into a valley of disrepair. We have it in our power, should we so choose, to lift millions from poverty, to help our citizens realize their dreams.”

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

I’m Not Where I Used To Be

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Facebook reminded that four years ago today the chronic lymphadenopathy caused by my autoimmune disease led to my six surgical lymph node biopsies. This was my final one so far. It left me with a permanently crooked smile but I’m alive.

Three years ago (on the top left) I had my stomach rebuilt and my esophagus repaired for the second time. Chronic inflammation and the drugs I take to manage my chronic pain and illness destroyed them but saved my liver, my ovaries and prevent another stroke. I eat differently but I can swallow; that’s a gift.

Two years ago, my pain in my spine made it hard to walk and caused persistent headaches. Osteoarthritis in my knee from chronic inflammation hurt me too. So, I got radio frequency ablation to scar the nerves and kill the pain. I got a cane for stability and injections in my knees.

The bottom right is me now. Functioning is still sometimes a struggle but I’m not where I was and that’s a blessing. I don’t know what’s next but I know that with faith, friends, family and fortitude I will continue to move forward. And I will share what I’ve learned along the way to help others to keep fighting.I do it through my posts, blogs and memoir and now speaking in public too!

I raised $4,000 last Saturday for the Autoimmune Association for Related Diseases and delivered their keynote address at their NYC walk. I did it because no matter what name is given to your suffering everyone with one of these more than 10 conditions needs to lean on others like them so they don’t feel so alone and misunderstood.
#igg4 #disability #chronicpain #invisibleillness #chronicillness #biopsy #lymphoma #autoimmunedisease @autoimmunediseasesassociation @selenagomez @lenadunham @ladygaga @kimkardashian @halleberry @missymisdemeanorelliott