A Year With No Regrets

Standard

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

Advertisements

Strength When I’m Weary

Standard

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

My Chronic Illness Made Me A Superhero

Standard

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

Trapped in A Cycle of Harassment as a Chronically Ill Person

Standard

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

An Extraordinary Ordinary Day

Standard

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

Four Days To Begin Again

Standard

It took me four days to get out of bed, get dressed, leave my house and go to work. My pain had finally become discomfort, which means it wasn’t gone but it was bearable with medication.

The cold was shock to my aching joints but it barely slowed me down. I was determined to begin again and I did. I was slower but I was present.

As soon as I got to work, the well-wishes poured in. I was grateful. However, I’m always baffled when people ask how do you feel? I always say fine even though I usually think “better than yesterday but every day is hard.”


Living with a chronic illness and chronic pain is isolating; it’s something most people can’t understand unless they live through it themselves. I often feel like I’m losing my mind. My crippling symptoms come out of no where for no apparent reason and sometimes they vanishes as quickly as they arrived. Frequently my days are like everyone else’s: exhausting, frustrating, fulfilling or exciting. But, on the days that my body goes haywire, I feel like I’ve aged instantly. I feel as if I’m losing quality time on this planet. So, I try to get back on my feet as quickly as possible even if I’m not 100 percent.


The truth is I decided a long time ago to refuse to silently fade away while an autoimmune disease tears apart the fabric of my life. I’ve discovered that By speaking (or in most cases typing out my tales) it informs people about the illness I kept secret for decades. It also might inspire the next person to fight for a cure/treatment. It may fosters compassion and understanding rather than pity or blame or doubt about the validity of a person’s illness. I hope it will allow someone else who is suffering to feel less alone. And, I pray it makes people think about how and if they can be there for someone in there life who is facing an obstacle.

#invisibleillness #spoonies #chronicpain #autoimmunedisease #chronicillness #igg4 #disability

Can I Take Anymore?

Standard

Last night, I couldn’t wipe away my tears fast enough. When my hand was free, I clasped it in front of me, looked up at the sky and cried out, “Lord, I’ve taken all I can. I’ve endured assaults, procedures/surgeries, endless pain, staggering medical bills, infidelity, damage to a limb, rejection as a writer, the loss of loved ones and stress and poor treatment at work but I’m tired and I need a break. This new pain is just too much, the sadness it brings is too great.”

The warm tears flowed again as I waited for an answer or a sign about what to do. Then, a single thought entered my mind, “you’ve prayed now think and wait.” I laid there for about an hour until I was calm. With my mind finally quiet I thought, “It will be okay. Maybe not tomorrow but it will be. Hold on.” It wasn’t the answer that I was looking for but it was enough to allow me to sleep. And, I did and woke up to face another day.

I sat stoically at my desk, doing my best to hid my sorrow. Several people asked but I said little. By the afternoon, I was trying to find joy in little things when my co-worker Diana came up and she hugged me. She didn’t know that unsolicited gesture of love made me feel connected to something other than my pain for a few precious moments.

#autoimmunedisease #spoonies #chronicpain #chronicillness #invisibleillness #igg4 #depression #disability #powerofprayer