A Year With No Regrets

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I have a hard time taking compliments; acknowledging that other people see the value of my skills or my life. I guess it’s just easier to be self-deprecating. But, every year on my birthday (12/17), I choose to look at all I’ve accomplished in my difficult life with pride. I also give praise and gratitude to my co-workers, friend, family and God for carrying when I felt like I couldn’t go any further. Each day I live is blessing and I cherish it.

I saw this image online and wondered why it’s always been hard for me to ask others to support the book I’m most proud of, my memoir, Misdiagnosed: The Search For Dr. House. It’s my tool to advocate for people struggling with misdiagnosis, chronic illness, chronic pain and a crisis of faith. I guess I felt like it would be begging to ask everyone who claims to be my friend or my family to buy my books, to share my posts or videos or do something to show that my life’s mission matters to them. I guess I didn’t want to be disappointed. But, by not saying anything, I let myself down.

My grandma Nettie used to say “a closed mouth doesn’t get fed.” And mother said,”by asking you have a 50-50 chance at yes. By saying nothing you have a 100% chance of a no.” I’ve decided not to let another year of my life go without saying something about this and anything else I want.

I will release my next memoir, Chronic, my journey to find peace despite emotional and physical pain. I don’t know if I will make another request. But, I know I will face this new year of life with less fear, less hesitation and less concern about whether or not anyone else will let me down. I’m focused of my actions. And, I vow to have no regrets.
#birthdaywish #noregrets #eachdayisablessing #memoir #autoimmunedisease #invisibleillness #chronicillness #chronicpain #igg4 #disability #spoonie #africanamerican #women

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Strength When I’m Weary

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Isiah 40:29 says, “He gives strength to the weary and increases the power of the weak.” As a person of faith I believe this. I’ve seen this in my own life.

I shared some of the ways I’ve witnessed proof of this during my speech at the American Autoimmune Related Diseases Association public forum. I’m sharing examples of this in my fifth and sixth video of the week. One will tell you why it’s okay to ask for help sometimes. The other shares how I get the best medical care.

Maybe one of my video clips, if not all, will allow people to see a chronically ill individuals differently in the future. If you missed my other video, you can find them on my page here, search my name on YouTube or on my blog: NikaBeamon.com

Everyone Needs Help Sometimes

Ensuring I get the best medical care

 

#autoimmunedisease #invisibleillness #chronicillness #chronicpain #igg4 #disability #detroit #spoonie #africanamerican #women

Bringing Hidden Strength Forward

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Isabel Allende said “We don’t even know how strong we are until we are forced to bring that hidden strength forward.”
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The depth of my appreciation for all I’ve survived now inspires me to help others who can’t or don’t have the means to help themselves. It also pushes me to be grateful for what I’ve gained rather than what I’ve lost.

Here are two more clips from my speech at the American Autoimmune Related Disease Association public forum in Detroit. I explain why I always say I’m fine when I’m asked, “how are you?” And I explain why there is a good side to being sick. I hope my words let others know they can soar above their obstacles without losing their joy or zest for life.

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Why it’s good to be sick

The real answer to how are you

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#autoimmunedisease #invisibleillness #chronicillness #chronicpain #igg4 #disability #detroit #spoonie #africanamerican #women #isabelallende

From Whence You Came

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James Baldwin said “Know from whence you came. If you know whence you came, there are absolutely no limitations to where you can go.”

I can’t forget how hard I’ve fought to stay alive. It’s been a struggle to eat, walk, to just exist without pain. But, the decades of chronic illness have also shown me the depths of faith, love and resilience. It’s driven me to use what I’ve learned to help others; to change the world’s perception about people like me (Sick, African American, women, disabled, etc…). And, Baldwin and my soul tell me I can make a difference.

I’m using everything I have to accomplish my goal. I’ve shared my road to diagnosis in my first memoir and now I’m working on a second one about the coping skills I’ve developed. I’ve also stared speaking publicly again. Most recently, I addressed a public forum hosted by the American Autoimmune Related Diseases Association in Michigan on 12/9. Here’s are two snippets from my speech.

What you need to know about autoimmune disease

Search for disease beyond the surface
#autoimmunedisease #invisibleillness #chronicillness #chronicpain #igg4 #disability #detroit #spoonie #africanamerican #women #jamesbaldwin

A Living Example Of Chronic Illness

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Snow blanketed the cities below us as we flew from Newark to Detroit for the day. As our plane climbed higher, I thought, this is the first time I’m not afraid to be in the air. I stared out the window and thought about what I could add to the discussion: “What every American needs to know about autoimmune disease.”

I’m an example of the damage diseases can do and how to live with it, I thought. I had a procedure 3 days ago and got to the airport on time with no sleep. I can deliver a message of perseverance.

Before we got to the AARDA seminar, United Airlines sent a text informing us our flight home was cancelled. We had no hotel and I wasn’t sure I could afford an overnight stay. My “extra money” was allocated to filling stockings for the homeless.

The text combined with pain in my spine/legs after walking through two airports and taking items on and off while standing without my cane at security checkpoints made me cry. I exclaimed, “I want to go home.” My fiancé’ replied, “we came all this way for you to speak and sell some books; that’s what you’re going to do.”

When we walked into the seminar, people were listening to a string of doctors. “They’ve gotten medical information, I need to speak from the heart.”

I talked about misdiagnosis, not appearing sick, and the financial toll, fear and depression tied to living with a chronic illness. Then, I said “don’t give up, advocate for your health, listen to your body, seek out support and information, and take joy in small things.”

At the end of my q&a, a woman said, “God sent you here to save a life. I didn’t want to keep going but you gave me hope.” As she teared up, she handed me a note that said: “I have instant respect, love and admiration for you. God bless you.”” Her sentiment was echoed by other women.


By the time the sun set, my fiancé and I headed to Chicago for a flight to NJ. During our 4 hour layover, my fiancé told a woman about my speech. She shared her son-In-law’s battle with lupus. She concluded that he was grateful to be alive. I thought, I feel the same way.

(P.S. we got home at 2 am but I got up at 8 to go to the store to buy the items to fill my stocking. I rested afterwards)


#autoimmunedisease #invisibleillness #chronicillness #chronicpain #igg4 #lupus #disability #detroit #newark
#spoonie #UnitedAirlines #aardatweets

What’s My Lucky Number?

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What’s my lucky number? I wondered as I walked in the Hospital For Special Surgery for procedure number 27.

I was greeted like I had walked into the fictional bar “Cheers.” Nurses and doctors shouted my name as I made my way to curtain number four. Waiting for me there were gown, cap, grippy socks and a chance at greater pain relief.

The only downside to my homecoming were repeated requests for me to take a pregnancy test. Three times I nicely replied that a wasn’t necessary. The fourth time I choked back tears and said I can’t get pregnant. It hasn’t been possible for me; that’s when the nurses finally got it.

During my hour long wait, I swallowed Ativan. It calmed my fears about the torture I was going to endure while strapped to a table with my face in a hole and my naked butt and back exposed to a room full of people, many who don’t ever introduce themselves.

When I stepped into the operating room, my mind was quiet. I prayed and focused on what was waiting for me when the procedure was over like possibly walking longer without my cane, dancing and slipping on a pair of high heels for the first time in three years. The sight of radiation suits on the doctors and nurses, cold rush from the iodine cleaning my back, burning from the lidocaine coating my nerves and the turns of the table to provide better fluoroscope/X-Ray images didn’t take me out of the meditative state I’d achieved.

Before I knew it I was in recovery dealing with an allergic reaction, weakness and tingling in my leg and foot, and soreness in my lower back. But, I was determined to go home to start healing. So I took Benadryl, waited an hour and walked out of the building using my cane with my mother hopefully that my future steps will be easier and less painful.

#spoonies #backpain #chronicpain #chronicillness #autoimmunedisease #invisibleillness #hss #igg4 #infertility #meditation

My Chronic Illness Made Me A Superhero

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I’m 5’9” tall, 155 pounds, dark-skinned with an obvious limp and a cane. So, how can I be invisible? I thought it was impossible for me not to be noticed but I’m treated like I’m hard to see by nearly everyone I pass on my commute.

I’m cut off at staircases, raced to the escalator or elevator, edged out of chairs in the handicapped/elderly section of the subway and commuter train and I’m often scrambling to stop a door from hitting me. Thankfully, my cane frequently acts as a door stopper. It does get kicked, stepped on and knocked down though. But I keep moving.

On the rare occasion that someone glances up from their phone and spots me, I get an awkward smile. Other people stare at me or feel bold enough to ask me, a perfect stranger, what’s wrong with me. Instead of seeing me as a whole person, those people only see the results of decades of living with an autoimmune disease.

Like a superhero in a comic book, I’ve chosen to see the condition I’ve been cursed with as a gift. I’ve turned my illness into my superpower. I use it to make people stop, be more considerate to the disabled and to learn more about autoimmune disease and chronic illness. I also show people that mental and spiritual strength can overcome any problem with the body. And, perhaps more importantly, I try to shine as a beacon for embracing the skin you are in, helping others who are less fortunate and using your talents to shine a light on injustices.


#chronicillness #chronicpain #injustice #Superpowers #Superhero #autoimmunedisease #igg4 #InvisibleIllness #disability #NYC