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

Trapped in A Cycle of Harassment as a Chronically Ill Person

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Here’s the sad truth: I expected to face some workplace harassment when I entertained the entertainment/ journalism industry more than 20 years ago. As a woman and an African-American, I was frequently warned about colleagues who had racial biases, were physical aggressive, would continue to ask for a date or tell inappropriate “jokes.” I wasn’t warned that the chronic illness I was battling would subject me to harassment. It would also prevent me from simply leaving a toxic workplace.

Over the years, I’ve had managers ask me to give details about my illness in violation of my right to privacy. I’ve been questioned about the use of my time off, which a company benefit is provided to every employee. I’ve even had on boss suggest that I was upset about a staffing issues because of my “condition.” I’ve had to work shifts that were tough on my body because asking for an accommodation might make me a target. I’ve stayed when I was ill so no one could look at my hours and try to use short shifts against me. I’ve used my vacation time instead of sick leave or disability so that I didn’t take more time off per year than other co-workers. I’ve returned to work as quickly as possible after procedures so employers didn’t look for a reason to let me go. I had to be better at my job so there was no excuse to doubt my ability.

Other than complain I could do little about these egregious violations other than complain or speak up for myself. Until the Affordable Health Care Act was passed I couldn’t leave a job. Why? I was unable to by health coverage on my own due to my pre-existing condition.

The autoimmune disease that tore through my body robbed me of job choices. My industry was going in a freelance direction. But, with bills piling up and the need for continuous health care, I couldn’t afford to be without a steady paycheck. I couldn’t take unpaid time off. I couldn’t risk having to explain my illness to someone else. Therefore, I endured being victimized repeatedly. I forced myself to work despite frequently being over burden by work while my healthy co-workers took unlimited time off.

Not much has changed over time other than I am now aware that it’s hard to be a woman and to be African-American in my industry and this world. However, it’s even more difficult and lonely to be a chronically ill person in the workplace.

Originally published in the Huffington Post: https://www.huffingtonpost.com/entry/trapped-in-a-cycle-of-harassment-as-a-chronically_us_5a1ecd72e4b00579aa29f91c

Thankful To Give

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“I need more rest,” I mumbled as I rolled over at 6:10 a.m. After returning to work on Monday following a brief flare-up, I pushed my body hard. I walked more than 7 thousand steps a day. Then, on Thursday, I stood for an hour and a half at a dual baby shower for two co-workers/ friends. So, I wanted to sleep in to rest my weary bones but I couldn’t.

“I gotta get up and go,” I mumbled.

An hour passed before I slumped onto the floor and dragged myself to the bathroom.


“I have a half hour to get dressed, get to the bus, NJ transit and then the 3 train uptown to the Salvation Army in Harlem. Today is the annual Disney Voluntears Thanksgiving holiday meal giveaway and I won’t miss it.”


I was walking as fast as I could through New York Penn Station. I was moving so quickly my cane slid a couple of times. I’d heard there was signal trouble on the subway. I knew I had to speed up or I’d be terribly late.


“You don’t need that cane sistah. You’re moving fast,” said a man as he smiled at me. “have a good Saturday beautiful. I hope you make someone’s day like you made mine.”


“Thank you! I hope so,” I said as I continued on my way.


Two stops before train slowly chugged into the Harlem Hospital/Schomburg Library stop (135th Street), a man named Juan got on the train. He was missing a hand, his arm was in a sling and his leg was bandaged.


“I’m not begging or looking for a handout. I’m searching for encouragement. Someone to lift me up when I am down. Someone did that for you to get to where you are. I’ve been through a lot as you can see. Now, I’m looking for a job so I can be there for my daughter. She looks to me and I’m looking to one of you. If you can help me, please do. If not, say a kind word,” said Juan.


“I don’t have a job for you but I have two dollars,” I replied. “It’s a start to getting on your feet.”


“Thank you,” replied Juan, glancing down at my cane. “Respect to you. I hope whatever is wrong with your leg gets better!


Three other people also extended money and up lifting words to Juan before I got off the train with a smile on my face (which I don’t like to have in NYC).


I remained cheerful as I stood for four hours handing out green peppers, yams and all the trimmings to families in need. The ache in my back and leg couldn’t erase the joy I felt volunteering and hearing thank you and happy holidays from the people we helped.


P.S. on my way home a group of religious people were singing. One of them handed me a pamphlet that said, “Heaven, how do you expect to get there?” I don’t know but I hope towards earning entrance.


#disability #autoimmunedisease #chronicillness #chronicpain #invisibleillness #spoonies #igg4 #thanksgiving #harlem #SalvationArmy #volunteering

An Extraordinary Ordinary Day

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An ordinary day can turn into something extraordinary for me. I realized that this morning when the clerk at the Duane Reade I frequently go to get candy for my co-workers asked me, “Miss, What’s wrong with your leg?”

“It’s not really my leg that’s the problem it’s my knees, hip and spine. They’re damaged by inflammation from an autoimmune condition. They cause me pain and some weakness. I’m trying to repair them,” I replied politely.

“Oh my friend has a problem,” said the clerk as she leaned forward to get closer to me. “The doctors told her she tore something in her knee and needed a knee operation. Then, the doctor said her knee was messed up because of something wrong with her back. Now she’s scared to have any operation.”

“She shouldn’t be. She has to trust and want to get better. I’ve filled my knee with joint fluid, gotten steroid injections in my spine, scarred my nerves and use a cane but I’m walking, most times with very little pain. I also don’t fall anymore. Doing something could make all the difference for her.”

“Let me get a paper to write down the name of the hospital you went to. I want my friend to go there. You are always smiling. Your doctors must be helping you.”

I gave her the information and walked out with joy in my heart.

P.S.
Later in the evening, I stopped by the corner fruit guy to get some grapes. He began waiting on another customer while searching for the rest of my change.

“It’s okay you can keep the 50 cents for another time,” I said.

“No, I stand for 14 hours a day. Today it was cold. But, I still don’t suffer like you. You walk up here with a stick to buy from me. I will not keep your money. I appreciate you buying from me.”

I took my change and shook his hand. Then, I blotted my eyes because I was moved by his words.

#autoimmunedisease #spoonies #invisibleillness #chronicpain #chronicillness #disability #igg4 #walgreens #nyc #duanereade