Years ago I decided my pain must have a purpose. And, I’ve made it my mission to use it to the benefit of others rather than allowing it to use me up. Two days ago, a writer at Bustle solicited stories about chronic pain. I opted to share mine. This article, published online today is the result:
#chronicpain #chronicillness #igg4 #invisibleillness #spoonies
I didn’t write my memoir to get rich or famous although I’d hoped for success. I bared my soul in Misdiagnosed: The Search For Dr. House so that others might know the frustration and fear of not knowing what’s wrong with you, the relief of finding the answer and the pain, loneliness and triumphs of living with a chronic illness. Others are now hearing my message and understanding the struggle; that’s a great accomplishment.
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New Amazon Customer Review
5.0 out of 5 stars
Journey for a diagnosis
ByPamela S. Waymanon October 13, 2017
Format: Kindle Edition
Verified Purchase
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This book is very interesting. A must read if you have had a medical mystery disease. Nika is slowly deteriorating and spends much time and money looking for a cure or at least a diagnosis of her illness.
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#writinglife #amazon #memoir #spoonies #chronicpain #chronicillness #autoimmunedisease #igg4 #disability #invisibleillness #review35 #aarda #greatblackspeakers
I’m not a rich woman at all, at least in a monetary sense. I’ve worked hard for more than two decades and earned more than most but I’ve also shelled out the vast majority of my cash to stay alive. Medical bills due to my autoimmune disease, igg4, sapped my account more than once. Yet, I’ve consistently come up with enough money every week to keep the candy basket on my desk full.
Sometimes, my co-workers contribute to the candy fund. But, the task of picking up the treats usually falls to me. Despite this, getting something that provides my colleagues with a little piece of happiness each day has been my joy. At times it’s given me a reason to get out of bed when I don’t want to in order to fill my “responsibility.” It has motivated me to walk further and get stronger.
Last week, as my mental and physical exhaustion reached a point when I couldn’t make another candy run I was given a gift. The candy in the picture was dropped off to my co-workers/ friends. Money was also left to pay for the next batch of sweets too.
No, I’m not a rich woman when it comes to money but I am when it comes to love and support.
#FoodForTheSoul #candylove #chronicpain #disability #invisibleillness #spoonie #igg4 #autoimmunedisease #chronicillness #coworkers #nyc
20 years have gone by as quickly as a wave in the ocean. I drifted into the world of TV to help a friend and ended up wading my way through nearly every position that exists. After keeping myself afloat in the business by being a jack of all trades, I finally found my calling as a writer.
I wanted the world to hear my voice through words. So, I expressed myself through my stories, show segments and specials. For two decades, I recorded and relayed information on nearly every major world event for one company. Today, as I arrived home my 20 year statue was waiting.
I don’t have another 20 years of snowstorms, missed holidays and long days of breaking news coverage in me. This is not because I’m not physically up to the task. I don’t want to miss out on the other parts of my life anymore. I also have more to say that won’t fit in a 20 second voiceover.
Yet, I look back on my career with fondness and I wonder what’s next for me? How will I make my mark on the world next and make a difference? I ask myself this a lot and as soon as I have the answer I will wade into my next 20 year adventure.
#journalism #tvnews #careerwomen #disability #chronicillness #autoimmunedisease #invisibleillness
“How are your joints?” My rheumatologist asked as she bent each limb and stretched them to test my pain and flexibility.
“The osteoarthritis in my hips, knees and feet is still there. They still hurt but there’s nothing new,” I responded.
“Do the joints still swell?”
“No. I can walk up to three mikes a day with pain but not swelling. Running and biking are a problem so I don’t them. I do what I can without hurting myself. I’ve adjusted.”
“Good. We have to check your immunoglobulins but I think you can reduce your plaquenil. You may have entered a good phase. Well will also do an abdominal scan to check your organs; that’s important. But, you’re looking good.”
I could barely wrap my brain around what my doctor was saying. I hadn’t reduced a pill in nearly five years. I’d often added to my collection but cutting a dosage was something I never thought would happen. I never considered remission because I’ve been so sick for so long without a break. Even if get just a few months of relief, I’ll take it, I thought as I happily went to give blood and schedule my scan.
#remission #disability #chronicpain #chronicillness #autoimmunedisease #igg4
I have a nightly ritual. I take my hair out of its ponytail when I get home from work. The hair is usually wet so I brush it until it’s smooth and dry. There’s no makeup to remove because I never wear any. I was natural before it was trendy. Then I change my clothes and make some dinner. Tonight, my ritual was interrupted for a good reason. I got a message that I’d received another, new 5 Star Review For Misdiagnosed: The Search for Dr. House
“It was an intense, emotional, and most of the time downright terrifying ride, but Nika always had her family right by her side.
All in all, I enjoyed the ride and am very grateful to Ms. Beamon for sharing it with us.”
https://alicesbookreviews.tumblr.com/
#HouseMD #NaturalBeauty #memoir #Invisibleillness #igg4 #autoimmunedisease #chronicillness #chronicpain #misdiagnosis
Full Review:
Misdignosed is a chronicle of Nika Beamon’s journey though the medical system, having been given multiple diagnosis-es, describing the symptoms, but not the cause. It covers her 20 years of bouncing between doctors and therapists, trying to figure out what she actually had, and all the stresses it added to her personal life. Beamons’s story can be found to be exceptionally relatable to many who struggle with a disease that is still unknown to them, even as base as depression. It is also a strong criticism of today’s medical system, where many are simply forgotten about or blatantly neglected.
I found that the stories are told in the style of House M.D., in that she was finally diagnosed correctly after having been looked at as a whole, and not in pieces, as happens too often in our current medical system.
The mystery began with a series of 104 degree fevers, joint-pain, and intense fatigue during her college and ended twenty years later with a lady named Doctor Reed. It was an intense, emotional, and most of the time downright terrifying ride, but Nika always had her family right by her side.
All in all, I enjoyed the ride and am very grateful to Ms. Beamon for sharing it with us. I wholeheartedly recommend Misdiagnosed.
Six hours of sleep is not usually enough for my body to function properly. But, I was motivated to rise because it was Meals on Wheels Saturday.
I went to bed 2:15 in the morning following a long day. It began with me asking an able bodied woman to move her purse so I could sit it the handicapped section on the train. She merely slid it over so I sat on part of it the entire ride. I followed that with a frustrating day at work. Afterwards, I headed to a Ladies Night gathering.
I limped, cautiously, up three floors then a spiral staircase inside of my condition-worker/friend Ashley’s apartment to the rooftop. My neuropathy made the trek
dangerous but when I got the top I knew the risk was worth it. I was in a grass covered oasis. The sun went down, her table top fireplace shined bright, wine was poured, snacks were eaten and stories were told. Before I knew it, it was after 11 pm.
The Mets game was over by the time I arrived at NY Penn Station. I moved around on tingling feet trying to escape from screaming, pushing, obnoxious drunks for a half an hour until my train was announced.
I wanted my long day to end so I decided to take a cab when I got to Newark. Two African cab drivers began speaking to each other. Then, one of them shouted, “You pay ten dollars.”
“Ah no! The law says you’re supposed to run your meter to determine the fare. I’ve taken a cab before and its six dollars.”
“You pay ten or no cab.”
“No cab.”
I waited the half hour for the next light rail train at 1:15 then I walked home, wondering if I’d oversleep. I didn’t. I woke up thinking that the woman on train, the drunks and the cab drivers made me yearn for more decency. So I decided to project the behaviors I wanted to be surrounded by like compassion and generosity. I happily delivered meals to seniors then my mother I filled book bags for homeless children.
#MealsOnWheels #DisneyVoluntears #Newark #NJTransit #Mets #disability #neuropathy #autoimmunedisease #chronicpain #chronicillness #BackToSchool
