My Life in Words: (Ashley’s Spoonie Story)

Ashley's Spoonie Story: Ashley's Chronic Pain Journey

According to the Merriam-Webster dictionary, the word “chronic” is defined as: continuing or occurring again and again for a long time, always present or encountered. The word “pain” is simply defined as: mild to severe discomfort and suffering. If you combine the two definitions of the words “chronic” and “pain”, we reach a sole statement that describes the life of those whose “normal” has become something most people cannot comprehend: mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, and is always present and encountered.

Chronic Pain is Life Changing

As is the case with a lot of chronic pain warriors, my life didn’t start out this way. There was once a time when my life didn’t involve seeing my doctors more often than my friends; when pharmacy visits didn’t happen every other day; when I didn’t have to end up in the ER on a Wednesday night, curled tightly into the fetal position; when I didn’t spend my nights tossing and turning because of the insomnia; when I didn’t have to open a medication bottle multiple times a day.

There was a time when when I didn’t have to research for hours on end just to understand what happens beneath my own skin; when I didn’t have to sit and rest after a shower; when I didn’t have to try to explain things about my body to other people that even I don’t understand fully; and a time when I wasn’t intimately familiar with the definition of “chronic pain” as a result of life has become every minute of every day.

The Life Changing Consequences of Chronic Pain

Everything changed on of March 21st, 2011. It happened in the blink of an eye. It was a Monday, a bright and sunny afternoon, when an overthrown softball collided with the back of my skull as I was leaving our school’s softball field. I don’t remember much of that incident, except for three distinct things: my coach’s voice close by which was ricocheting around me like a bouncy ball; the cracking sound of the softball hitting my skull resounding in my ears like an echo in a cave; And lastly, the pain. The pain is what I remember the most, and rightly so, as it hasn’t stopped in 8 years, 5 months, and 25 days.

My Chronic Pain Journey

Throughout these years, months, and days, it has been a perplexing, debilitating, yet rewarding and valuable journey. There have been countless moments where I can’t even seem to even hold myself up anymore, falling to the floor and weeping for the soul that’s exhausted and depleted, and wondering if this is a life worth even living. I watched the doctor that I had trusted for 4 years look me in the eye and confidently tell me “I don’t believe you’re in that much pain.” I had turned to her to help me find answers to my never-ending questions and search for treatments that would help give me just a small glimpse of blissful relief, and this is what she said to me. She didn’t see the way I collapsed in the hallway; she didn’t hear my sobs outside of her pretentiously white-walled office; she didn’t see my family pick me up off the ground, all the while telling me repeatedly “we believe you.”

Living chronically ill isn’t for the weak, it has more hard moments that you would ever be able to imagine. However, there are also some moments that have made this journey that I’ve been living worth it in the end. For example, it has taught me how self-love is one of the most important things in life. One morning, as I stared into the full-length mirror that I attached to the back of my university dorm door, all I could see was a shadow of someone I once knew, someone I couldn’t even recognize. Staring at my reflection with my roommates laughing on the other side of the door, I said to my reflection, “I am going to love you one day, give me some time.” I realized that just because our bodies feel like a prison, that doesn’t mean we should treat them that way. And sometime later, before I even knew it, I stared at that same reflection and saw something else. I saw someone who adored their body, even if it malfunctioned.

The Importance of Maintaining Self Love on Your Chronic Pain Journey

Living life with chronic pain, a mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, always present and encountered, might be hard for others to understand, but it’s an understood normal for us chronic pain warriors. We wake up every morning to endure another day, with a strength we didn’t know was possible. But it’s so important to love yourself, despite the reality your body puts you through. I loved myself as I walked across my university stage and received my college diploma; and I also loved myself as I sat in the ER in excruciating pain on a Tuesday night. Your body deserves the love you have to give, too.

March 23, 2019June 21, 2019

Blake Shelton and Music as a Coping Tool for Chronic Illnesses

How listening to country music helps me cope with cerebral palsy and chronic illnesses

When it comes to having chronic illnesses such as chronic hip pain due to my cerebral palsy, a neurological condition that affects mostly in the left side of my body. Life can get pretty hectic, sometimes it mixes that in with having the diagnosis of depression and anxiety.

People always ask me what gets me through it. What helps you when you can’t control your body? And you can’t control what it’s doing, although you’re a writer and you love to write, but when you can’t control the days where your chronic illness makes you feel defeated. What do you do when you feel trapped in your body, because you’re in so much pain that you can’t write? How do you cope with that?

Coping When You Can’t Control Your Body

Well ever since I was 13 years old, I have been a huge fan of country music, because it tells a story of someone’s life. It takes you to a whole different world. A world where my mind could escape from the reality I’m facing at the moment, when having these episodes where I feel like I can’t control my body.

What do you do when you feel trapped in your body, because you're in so much pain that you can't write? How do you cope with that? Music helps me.

One of the country stars that help me cope is Blake Shelton. Every time I feel like I’m losing control of the situation, because of my chronic pain and Cerebral Palsy, I play his first album. I listen to the words of the song Austin it claims me down and relaxes my body.

Blake Shelton also has a gift of telling a story in such a powerful way that makes the story seem real. It makes me feel like I’m living in that storyline as the songs play.

I hear the voice of Blake Shelton, and it brings me out of my reality for just those few moments where I feel like a monster has taken over my body and it’s winning my battle against chronic pain. Plus, all of my other issues that I have to face in my everyday life.

With my condition, Blake Shelton gives me peace in mind that along the lines of my crazy hectic life with Cerebral Palsy and chronic illnesses that I am strong and I can make it through

Peace of Mind Through Music

With my condition, Blake Shelton gives me peace of mind that along the lines of my crazy hectic life with Cerebral Palsy and chronic illnesses that I am strong and I can make it through anything.

Hopefully, one day, he’ll be singing one of the country songs that I wrote for him. Since I have dreams of becoming a songwriter one day and I’m currently going to school for creative writing for entertainment, I’m working towards my goals and dreams so that the story of my journey can be told with the words I write.

Tylia Flores is a 24-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world.

March 11, 2019June 21, 2019

10 Things I Do Because I Have Dysautonomia

Ten Things I Do Because I Have Dysautonomia and my tips for others to live well with this illness.

Six months ago, I was diagnosed with small fiber neuropathy and autonomic neuropathy, which is a form of dysautonomia. I had been searching for a diagnosis for my unexplained weakness and fatigue for a few years, but all of my testing was coming back normal. Every doctor I saw diagnosed me with different conditions: depression, fibromyalgia, chronic fatigue syndrome, anxiety, and PTSD. I never felt like these were the cause of my symptoms, and after months of searching, I was referred to an amazing neurologist who put the pieces together and found the true cause.

In the human body, the autonomic nerves control things that we don’t normally need to think about like digestion, blood pressure, and heart rate. Autonomic neuropathy causes all of these nerves to malfunction. Though I have found many things that help, I still experience symptoms such as dizziness, nausea, fatigue, and weakness on a daily basis. I am working hard to improve my symptoms and quality-of-life, but I know that the chances are low of my nerves regenerating.

Because of this, I have learned to manage my symptoms with lifestyle changes as well as medications. To me, these are normal things that I do every day. But to other people, these things might seem a little bit weird. I hope that by sharing these 10 things, I can help bring a better understanding to the chargies living with this condition.

Ten things that I do because I have Dysautonomia:

Fidget Constantly Autonomic neuropathy causes blood to pool in my arms and legs, so I try to move them a lot. I fidget while sitting down, standing in line, and even in bed. This keeps the blood moving around and prevents my arms and legs from becoming painful and swollen.
Drink Lots of Water Autonomic neuropathy causes me to have low blood volume, so to combat this, I drink water all the time. I always have a water bottle with me, gallons of water in my car, and electrolyte tablets in my purse.
Wear Compression Socks Because autonomic neuropathy causes blood pooling in my legs, I wear compression socks anytime I am moving around to help squeeze the blood back to my brain. They keep me from feeling dizzy and lightheaded, and they help my pain a little bit as well. Most compression socks are not the most stylish, and most of my outfits don’t look the greatest with knee-high socks. However, I put up with this since compression socks make such a difference for me.
Make Lots of Bathroom Trips Autonomic neuropathy causes my G.I. system to malfunction in different ways everyday. I get nauseous frequently, and a lot of times, food doesn’t sit well. I also have problems completely emptying my bladder, so I tend to make lots of bathroom trips in order to avoid being uncomfortable with no bathroom available.
Squat or Sit on the Floor Sometimes on bad days, I just need to sit down. This is not always convenient, like when I am standing in line at the grocery store, but it’s better to be sitting and embarrassed than unconscious. If I am shopping with friends and they stop to look at something, sometimes I will find a seat on the floor next to them. Usually, though, I just use my wheelchair so that I always have somewhere to sit and stay safe.
Avoid the Heat As much as I don’t like the cold, the heat is so much worse for my symptoms. Autonomic neuropathy can cause heat intolerance, which makes me nauseous, lightheaded, and extremely tired when I am overheated. Because my sweat glands are affected as well, I can get overheated in places that most people would find a comfortable temperature. I always carry cooling towels in my purse, but sometimes it is just too hot for me to stay.
Elevate my Legs Because the blood pools in my legs, I like to rest with my legs elevated higher than the rest of my body. This can help to resolve symptoms, and it improves my ability to rest. If I am extremely symptomatic, sometimes I will lay on the floor with my legs up the wall.
Change Positions Slowly If I move too quickly, my body doesn’t have enough time to move the blood from my legs to my brain. This is especially important when I wake up in the morning or from a nap. I spend a few minutes sitting upright, a few minutes with my legs dangling off the bed, and a few minutes standing up before I start my day. This gives everything time to get into the right place and avoid a morning flare.
Pick Things Up with My Feet Bending over to pick things up causes a lot of dizziness, so I find creative ways to avoid it. At home, I usually am barefoot and pick things up with my toes, but in public, I try to ask for help or squat down to get things. Soon, my service dog in training will be able to pick things up for me so that I no longer need assistance.
Use Grocery Delivery Autonomic neuropathy causes my heart rate to be elevated all throughout the day. This makes normal things like washing the dishes, folding clothes, and going to school a workout for my heart. If I can conserve energy by delegating tasks, I will, and getting groceries is one of my least favorite tasks. It always drains my energy, and I am always exhausted for a few days afterwards. Getting the groceries delivered means that I can spend my energy doing things that I find enjoyable instead.

Some of these things may seem a little weird or unnatural, but for those with autonomic neuropathy and other forms of dysautonomia, they are essential. They are all small things, but when combined, they make a huge difference in symptom control and quality of life.

Blythe Neer is a Chargie living well with Celiac Disease, Ehlers Danlos Syndrome, and Small Fiber and Autonomic Neuropathies. She spends most of her time at home blogging, taking photos, training her future service dog, and making unique spoon gifts with polymer clay for her Etsy shop. You can find her at sustainablespoonie.com or on Instagram at instagram.com/sustainablespoonie.

March 9, 2019November 24, 2019

The Internal Struggles We Face with Multiple Chronic Illnesses.

Chronic illness is like eating potato chips – you can never have just one. At least that’s true for me. I was diagnosed with Crohn’s Disease in 1995 and since then I have had an avalanche of multiple other chronic illness diagnoses. From Depression and Anxiety to Fibromyalgia and Bile Salt Malabsorption to Irritable Bowel Syndrome and Insomnia. I think the chronic nausea and diarrhea are there just for fun. I might have even missed a few, but you get the idea. I have a gamut of chronic nonsense happening writhing my body.

The Day to Day: What will flare and what won’t?!

Sometimes everything can remain in check. My bowels remain relatively calm and only give me somewhat minor issues. My depression and anxiety are held at bay with more positive things that might be occurring in my life. My insomnia gets tired and finally goes to sleep so I can rest. And I can sometimes even manage to move just enough, or just little enough, that my Fibromyalgia is mostly quiet and I don’t hurt as much as I usually do. Though these moments are super rare, they do occasionally happen. It’s never for long and never, ever predictable, but the moments do occur. And in those moments I feel like what I imagine a healthy person feels like; or at least someone less like myself.

Then there are the days when everything works against each other to cause complete and total anarchy in my body and brain. A typical day like that is one of the toughest because I’m not only fighting one of my chronic illnesses, I’m fighting all of them at once. When these days happen the illnesses are just continually feeding off of each other. It’s like fighting a Hydra – cut one head off and three more grow in its place. These days are challenging and just as unpredictable as the really good days, but somehow they happen more often.

I'm not only fighting one of my chronic illnesses, I'm fighting all of them at once. When these days happen the illnesses are just continually feeding off of each other. It's like fighting a Hydra – cut one head off and three more grow in its place. These days are challenging and just as unpredictable as the really good days, but somehow they happen more often.

Inside My Mind and Body with Chronic Illness

Follow me down this rabbit hole of chronic illness overload to experience what my body goes through, and how it talks to itself.

It usually starts in the early hours of the morning between 4:00am and 6:00am.

Brain: “Wake up!”

Anxiety: “Hey remember that feeling you get in the pit of your stomach when you’re going down a roller coaster? That weird adrenaline rush feeling? Here you go. Do you feel it?”

Stomach: “Ahh! What the heck??!!”

Body: “Please, I’m tired. Let’s sleep. Nothing is going on. I’m safe. I’m warm. I’m okay. Just sleep. Please.”

Anxiety: “Nope. We have things to worry about.”

Body: “Don’t wanna. Wanna sleep.” Tries to roll over but realizes it hurts. Elbows and wrists are stiff and achy. Legs feel heavy.

Brain: “Nope. Not happening.”

Bowels: “Hey, guess what’s up? I am! And I gotta go. NOW!”

Brain: “Can’t we ignore you, bowels? You never play fair.”

Bowels: “No way – gotta go – NOW!”

Body: Manages to sit up. “Ouch, my back!”

Body: “Must to run to the bathroom.” Quickly realizes everything hurts. Screams silently from every muscle and joint but knows we must make it to the bathroom or we’ll have an accident. Curses bowels.

Bowels: “We’re done. For now. Heh, heh.”

Body: “Please let’s go back to sleep now. Everything hurts.” Manages to lay back in bed and get covers on top of me.

Brain: “You can try but it isn’t going to work. I’m getting cranky.”

Anxiety: “Remember that thing that you said but you should have said this instead? Let’s think about that and replay the conversation twelve different ways over and over even though we know it will never happen. C’mon, it’ll be fun!”

Brain: “No, that’s dumb. Don’t think about anything. Just lay here and be quiet.”

Body: “Yes! Let’s sleep more.”

Bowels: “NO! Let’s go again!”

Body: I’m so tired. I hurt so bad. Okay, I guess we’re doing this. Throws covers off and runs to the bathroom again.

Brain: “Maybe I am tired now. But now I hurt. I’m going to ache and throb now.”

Depression: “I hate everything. I wish we could just hide under the covers and never get out of bed again. Like, ever.”

Body: Drags self back to bed. Attempts to get comfortable.

Stomach: “Hello? Yes, I still hurt. I’m still here. Here’s a bad cramp because I’m feeling left out.”

Anxiety: “What if…”

Brain: Throb, throb, throb.

Body: “Drink water. I need water. I’m dehydrated. Get up and get water.”

Stomach: “Don’t do it. I’ll reject any sort of hydration or nutrition you give me.”

Bowels: “If Stomach doesn’t reject it I will. Oh hey, let’s go AGAIN!”

Body: “Ugh!” Runs to bathroom again. “I’m so tired. I just want to lay down on the floor. That bathroom rug looks comfortable. Let’s lay down.”

Brain: “That floor is going to hurt so bad. You might get down there but how are you going to get back up?” Throb, throb.

Bowels: “Oh we’ll make sure she gets up. Heh, heh.”

Body: “Fine, forget the floor. I’ll go to bed.” Finally gets back to the bed and gets somewhat comfortable. “Why do I hurt so bad? I did nothing yesterday that would cause this pain. I need a hot shower. Hey Bowels, how long until the next …. oh!” Runs to the bathroom again.

Bowels: “Yeah, we’re doing this every fifteen minutes. No shower for you today!”

Body: “Meh, I’m too tired to shower now anyway.”

Brain: “What time is it now?” Throb, throb. “Oh, we’ve only been awake an hour? It’s going to be a long, bad day.” Throb, throb, throb.

Depression: “I’m so tired of this. No one possibly understands how bad this is. No one cares. This isn’t living. This is terrible. If we lay here still enough can we just stop breathing?”

Anxiety: “But what about all the things you need to do? What about all the things you have done? Let’s stop and reassess everything in your life right now. Hey, remember that time in third grade when…”

Brain: Throb, throb, “No please, no. Just everyone shut up! I’m hurting.” Throb, throb, throb.

Body: “Hey, I’ve been hurting and just want to sleep but no one is listening to me!”

Inside my mind and body with multiple chronic illnesses. Sometimes all I want to do is sleep!

Stomach: “I don’t feel so good either. Brain pain is making me feel sick. I think might throw up.”

Body: “Oh no, I cannot handle retching right now. It’s going to hurt so bad and it already feels like someone took a baseball bat to my back. Let’s try to lay back down.”

Bowels: “Haha! No!”

And so on and so forth throughout the day as the never ending cycle of what happens when all my chronic illnesses come together and work as one, slowly feeding off of each other in another attempt to destroy me. It’s excruciating and it’s exhausting. But somehow, every single time I make it through. These days are the worst, and even though at the time when my body is continually arguing with itself, I somehow always know that I will make it through. The next day might not be so bad, or the day after that. So I hang on, just one more day. Because eventually, I will get one of those good days where all my chronic illnesses play nice with each other. And those are the best days.

Jenni Lock is the creator of Jenni’s Guts blog and writes about her journey with intestinal nonsense and other chronic health issues. Her sense of humor, sarcasm, and willingness to talk about the things most people just think are all part of her charm. Jenni is a nurse, however is unable to work due to struggling with Crohn’s disease, Irritable Bowel Syndrome, Bile Acid Malabsorption, chronic nausea and diarrhea, Fibromyalgia, Anxiety, Depression, Insomnia and PTSD. Learn more about Jenni and her guts at http://JennisGuts.blogspot.com.

June 9, 2018June 8, 2018

What It’s Like to Have Anxiety and Cerebral Palsy

When I think of the word anxiety, it brings up the feelings of worry and stress that my cerebral palsy causes in my everyday life.

It’s not that I want to have anxiety or that I like the feeling of having it, it’s just the simplest things can trigger me. I noticed the first thing that triggers me to have anxiety attacks is when I can’t physically be a part of something because of the disability my cerebral palsy causes me.

“…the simplest things can trigger me.”

For example, when I was growing up and attending public school, going to physical education class used to be my least favorite class. If the teacher had something that I couldn’t be a part of, I would have sit on the sidelines and watch, wishing I could be like the rest of the world.

I still feel the same way at times, even as an adult. But I would say what triggers my anxiety now as an adult is not being able to get up and go like a “normal” person would. I become overwhelmed with the everyday stresses of life.

“…what triggers my anxiety now as an adult is not being able to get up and go like a ‘normal’ person would.”

Having cerebral palsy can make me feel very overwhelmed with life altogether. Going to doctor’s appointments can become very stressful and cause me to have an anxiety attack because of the outcome of the doctor’s finding of my condition.

When it comes to my anxiety, it feels like the world is spinning and nothing I do could stop me from having an attack. But it also feels like I’m trapped in my own body because I’m stuck in my space that I can’t get out of twenty-four seven.

“…it feels like the world is spinning and nothing I do could stop me from having an attack…”

It’s so hard just to keep going at times, especially when I look at people my age that don’t have anything wrong with them according to society.

Dealing with the pain also causes anxiety for me as well. My mind goes on a roller coaster ride as my legs begin to hurt and I think to myself, “Oh, here we go again.” Along with that it also feels like I’m the gingerbread man in the board game when it gets stuck.

But the thing that helps it all, aside from having to sometimes take medication for it, is the support of my family and my faith in God as my savior because I know with Him by my side I’ll be okay.

About the Author:

Tylia Flores is a 22-year-old born with cerebral palsy. Although her condition has affected her mobility, it has never affected her will and determination to make a difference in the world. Through her many life challenges and obstacles, she discovered her passion for writing. Tylia’s goal in life is to share her stories with the world. In doing so, she hopes to help others with disabilities realize that they, too, have the potential to make their dreams come true.

April 19, 2018April 19, 2018

How Marya Found Grace Through Chronic Illness

I’ve been diagnosed with cervical dystonia, a neurological movement disorder, since 2010. As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life including limiting my driving abilities, my capacity to work and to be able to take my son with special needs, to some of the extracurricular things I’d like to see him be able to participate in.

“As an extremely disabling condition with sometimes relentless chronic pain, it’s had a tremendous impact on just about every area of my life.”

I’ve been diagnosed with Irritable Bowel Syndrome for years and figured that every quirky GI symptom I’ve had was just the IBS acting up. But for the past few months the more distressing symptoms were intensifying and I was noting more blood in the toilet when I went to the bathroom.

As a special needs mom of three, one of whom is a heart patient, I’m pretty good at doing research. So naturally, I started Googling “Inflammatory Bowel Disease” and started to wonder if that was what was going on and scaring the daylights out of myself in the process.

Finally, I went to the gastro in January, who ordered a colonoscopy. I procrastinated about getting that procedure done for a few months and finally got that done in April of this year.

Well.

For some reason the prep didn’t seem to be going as well as previous times. When I came out of the procedure, the doctor told me that the prep was indeed poor, and that I had colitis but they’d have to do biopsies in order to confirm what type it was. The doctor didn’t think anything major like cancer was going on.

Afterwards we stopped for breakfast at one of our favorite places just like we’d done in the past. I ordered some food, but then I began feeling horribly nauseous and couldn’t eat. The nausea became overwhelming and then I lost consciousness in the restaurant in front of my husband. A retired law enforcement officer, he started trying to give me mouth to mouth right away. Luckily there were some medical personnel from the local hospital there too and they called an ambulance.

“I lost consciousness in the restaurant in front of my husband […] he started trying to give me mouth to mouth right away.”

I spent several hours on ER having vitals checked as well as an EKG. I was super nauseous for several hours and couldn’t go to the bathroom by myself for awhile. My vitals all checked out as normal, but every time I tried to stand up the nausea came back. They gave me some meds or that and when it finally seemed to be under control, I went home to rest.

The doctor told me that it didn’t matter what I ate, but again… special needs mom that I am, I question standard medical advice. Also, I’m pretty holistically-minded about everything. I knew about the Gaps diet and was able to source a few things immediately. Something about being told my colon was “oozing” was very motivating to get started right away!

I’ve already begun to see some slow improvement but I understand that this is a major lifestyle change. I’d already made lots of changes over the last couple of years including a 40 pound weight loss and a food plan that was comfortable for me. But now I’m having to make more changes. I miss my morning oatmeal, coffee, and other creature comforts that help to keep me sane.

“30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me.”

Checking in with my mindset about everything, although I complain about the food restrictions on the Gaps diet, I think I’ve handled it all relatively well. 30+ years of sobriety, being a special needs mom and living with another chronic illness have helped me to develop a self care arsenal that keeps me grounded through anything that life throws at me. For me this looks like daily devotions, meditation, yoga, and writing. A little dark humor and sarcasm goes a long way too. Unfortunately that list also used to include a good cup of coffee, but I guess that’s out for now until I’m more stable.

I’ve learned that my life’s journey is a marathon, not a sprint. Sometimes there’s going to be awful days. Situations that I’m totally powerless over. At times like these it’s perfectly okay to lay low and focus on what I need to.

At this point I haven’t had the follow up with the doctor or got the lab results back. Honestly, I am a little anxious about it after doing some research and seeing the the possible treatment options are, how invasive they might be, how much is this going to cost and how cooperative will my insurance company be?

“I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.”

But believe it or not, it isn’t consuming me like it might have at one time. I stay busy with my blog, my dogs and my self-care practices in order to stay grounded. I’m being proactive about what I have to do, taking it one day at a time and giving myself lots of grace to get through this.

Marya Mesa is a special needs mother who writes at www.ChronicMomLife.com about chronically sober living with faith, intention, & self care.

March 26, 2018July 15, 2019

Chronic Illness: Does It Make Me Less of A Woman?

Have you ever asked this question to yourself?

Or maybe its counterparts: “Am I enough?” or “Do I have what it takes?”

“Am I enough?” … “Do I have what it takes?”

Well, who can blame you?

You can’t stay out long without worrying about your unpredictable and embarrassing symptoms that can come on anytime.

You’ve canceled multiple events, projects, trips and dates because of your chronic back pain, migraine, brain fog or other chronic symptoms you cannot identify anymore.

Or, you gave up that promotion because you need to rest and stay home to hopefully (fingers-crossed) recover.

Heck, you can’t even clean up your own room and shower on your bad days!

For most of these things, I have learned to live with and without through the years since I became a spoonie. But there is still this one thing that makes me cringe and keeps me awake at night.

“I have learned to live with and without through the years since I became a spoonie. But there is still this one thing that makes me cringe and keeps me awake at night.”

The Most Popular Pageant Question

“What is the essence of being a woman?”

Let that question hang for a moment there and let’s think about it.

While I haven’t joined any beauty pageant (nor will I ever join one), I’ve felt compelled to answer that question as I got older.

Most especially right after every major flare-up.

And then there are those follow-up questions that I often hear from family and friends that take my self-worth to a nosedive.

“How can you handle the stress of being a wife and a mother if you’re like that?

“Can your body bear and give birth to a child?”

“You get dizzy often. How can you survive the sleepless nights of a new mother plus manage the household?

I love kids and I’d love to have my own.

I long to care for and love a lifetime partner.

I’m not going to lie to you. Motherhood has been one of my dreams as a woman.

I thought it was a big part of my essence.

So, what if…

… my condition won’t allow me to bear and raise a child, do most of the house chores, homeschool, and get a regular job?

Will I be less of a woman? Will I not live up to the true essence of a woman?

Ms. Universe 1994 Sushmita Sen said that, “Just being a woman is God’s gift that all of us must appreciate. The origin of a child is a mother, and is a woman. She shows a man what sharing, caring and loving is all about. That is the essence of a woman.”

That was beautiful.

A woman does not have to be a mother or a wife to share, care, and love.

Granted, Sushmita is not a spoonie like you and me (not that I know of). And I know that it’s hard to think of your real essence when you wake up feeling like you were hit by a truck.

So, I looked for…

3 Real and Badass Women with Chronic Illness

Venus Williams

Williams is one of the world’s best woman tennis players. In 2011, she disclosed that she was diagnosed with the incurable and difficult to diagnose Sjögren’s Syndrome. It’s an autoimmune condition in which the immune system mistakenly attacks the glands that make tears and saliva. It can also target the joints, thyroid, kidneys, liver, lungs, skin and nerves.

After adopting a new exercise regimen and a vegan diet, she started to recover and able to play again. In fact, she won her first tennis title in two years in 2014 in Dubai. Win or lose, she continued to play.

“I think we all dream of winning tournaments but we don’t think of being more of a force in the game of tennis other than for ourselves. For me that would be the best legacy”, she told CNN.

Jen Snyder

I personally know Jen as she is one of my awesome online business mentors. She is a wife and a mom to the “best 3 crazies” (her words, not mine). She has an online business which “helps women build and grow their online business, so they can have the flexibility to do the work they love while spending time with the people they love.”

When she was 25 years old, she was diagnosed with Lupus. Later on, she discovered she also had Raynaud’s, Sjögren’s Syndrome, and Endometriosis.

Her best piece of advice for anyone living with chronic illness and trying to run a business?

“Listen to your body! If your body is saying rest, rest! Don’t overdo it so you end up in the hospital or worse. Remember we aren’t performing brain surgery or creating oxygen. Our businesses and our missions are important, but we are too!” – Jen

“Listen to your body! If your body is saying rest, rest!”

Kris Carr

Kris is the subject and director of the award-winning documentary film “Crazy Sexy Cancer” which was about her transformation and health journey through cancer. On Valentine’s Day in 2003, she was diagnosed with a rare and incurable cancer.

She changed her diet and lifestyle and discovered that while she cannot be cured, she could still be healthy and feel better.

She has written 5 best-selling books and created health and wellness programs that inspire, transform and heal a lot of women.

Kris says, “If I can pull that off, just imagine what YOU can do.”

Celebrate What You Can Do

There is no shame in pulling the covers over your head and canceling your appointments to rest and take care of yourself.

No shame in your physical limitations.

You may miss those things you used to do. I do, too.

But is it possible you may be taking the things you can still do for granted?

I believe that you have a purpose. Every single day, you are being equipped to fulfill it. There is no one else who can take your place to do it.

What’s Next?

Close your eyes and take 3 deep and slow breaths.

Now, think of the things you can still do.

In the comments, share one of them by completing this sentence:

I can ___________________ and I’m grateful for it.

Lastly, this goes out to you and to the woman in the mirror:

Your essence is within you and no one can take it away from you.

Chronic illness does not make you less of a woman.

Mary is a thriving spoonie, a health blogger, an online solopreneur and a natural healing advocate. Despite chronic illness, she believes spoonies are valuable, strong and capable to make a difference in our society. She is on a mission to help women with chronic illness thrive by sharing her own experiences, fellow spoonies’ success stories, tools, programs and tips that focus on real food. Join her in this journey here.

March 23, 2018March 23, 2018

In The Middle Of Cancer: How Cancer Effects & Shapes an Entire Family

A year after my father’s diagnosis of prostate cancer, my family and I have learned that the saying, “one day at a time” is more than a simple saying, but a way of life when you’re dealing with such a sneaky illness like cancer. My family and I aren’t strangers to overcoming obstacles but when we got the news about my dad having cancer my mom, sister, and myself all wondered how did we get here? Is this really happening? And what do we do now?

“…when we got the news about my dad having cancer my mom, sister, and myself all wondered how did we get here? Is this really happening? And what do we do now?”

Once the initial shock wore off, we had a game plan. We eventually started taking each day as they came. And soon we realized that all things considered we were very fortunate. To have had (and to still have) the outpour of love and support from friends and family means so much. We realize now that family doesn’t necessarily have to mean you share the same blood, but you can share family in spirit and in the heart.

While cancer will always be something we contend with, it’s comforting to know we won’t be doing it alone. I have noticed my dad has changed some since his diagnosis; he is more reflective and reminisces a lot. Music also has played a big part in our journey. When my dad first started chemo, my sister started a chemo countdown where he wore his favorite metal and rock band t-shirts to his chemo appointments, then talking to the artists via Instagram and Twitter. Does music heal? Maybe not from the scientific standpoint. But it does help, not only the person going through it, but it can also help soothe and forget your issues for just a little while.

“I have noticed my dad has changed some since his diagnosis; he is more reflective and reminisces a lot.”

I also believe a positive attitude is everything. If you believe you can, you will. It’s important to remember too, that putting on a brave face also means being real about your dealing with. If you’re pissed, be pissed. If you want to scream or cry then do just that. I have done all of the above.

When you’re faced with something as scary as cancer, it can teach you very quickly what is important. I also know that we could have it much worse than we do. I know for me that what I used to think of as a big deal isn’t. And that I do my best now not to take for granted any and all chances that I am given to tell those how much they mean to me, and how much I truly love them.

“…it feels like we’re walking on this surreal tightrope. Where are we balancing between keeping a normal routine? We’re holding our breath once more with the next doctor appointment.”

For my family and me, it feels like we’re walking on this surreal tightrope. Where are we balancing between keeping a normal routine? We’re holding our breath once more with the next doctor appointment. It’s in these moments where I turn to music once again. And one song I leaned toward to the most during the beginning of this was a song by one of my favorite bands called, Jonathan Jackson + Enation. The title of the song is “Anthem For The Apocalypse.” “Would you look me in the eye? You have nothing to fear the storm will clear. I will hold you in the night.” It just so happens that on the day that this album came out on, July 14th, 2016, that was the day my dad had his first chemo session.

I took that as a sign that everything would be okay. This journey will always be one my family and I will always be on. Cancer will always be a close advisory for us. I see cancer now as the unwanted guest we can’t get rid of. But if that’s the price my family and I have to pay to still have my dad then, we can learn to live with cancer.

I guess that’s the in-between of living with cancer. Having to deal with it, manage it in a way where it’s not the main focus in your life, but you still know it’s there. It will always be there for us; for my dad.

In other words stay on top of treating it, but making sure it doesn’t topple you in the process.

“I see cancer now as the unwanted guest we can’t get rid of. But if that’s the price my family and I have to pay to still have my dad then, we can learn to live with cancer.”

While cancer does bring a lot of uncertainty with it, there is one thing I am certain of and that is cancer has chosen one tough family to mess with. And we will never surrender to it. We are ready to fight with everything we have in the years to come. Cancer has nothing on us. Adversity and fighting against unbelievable odds are what my family and I do best.

We don’t like it, but we learn to live with cancer in the best way possible. And we do what we need to deal with it at that moment. And believe me, there are plenty of moments. We learn to lean our strength as a family and remember that tough moments in the journey of cancer are part of the deal. If cancer has taught me anything is that when you find yourself in the middle of a pile of crap, you push through it. Because that is only part of the journey and not the entire journey.

Jessica is the founder/writer of the blog, “The Abler.” She is also the host of her own podcast, “The Many Faces Of The Abled.” She is a passionate disability activist. You can find her blog at https://seetheabled.blogspot.com.

March 19, 2018June 21, 2019

You Don’t Die by Suicide

Suicide prevention, awareness, and the continuing care of survivors is dear to my heart. I am a suicide survivor.

At a very low point in my marriage, while battling back from cancer surgery, I lost all my hope, all feeling of worthiness to breathe air, and believed I was a burden to society who had completely failed as a mother. Eventually it got to the point of lining up 15 or more prescription bottles and emptied them in to my stomach with a liter of Jack Daniels.

“I lost all my hope, all feeling of worthiness to breathe air, and believed I was a burden to society…”

I never lost consciousness, and didn’t even get sleepy. Nope, my OCD kicked in and I cleaned the house from top to bottom. My (now ex-) husband’s response was to demand what I was trying to do to him. The responses from my family and minister were no better. Filled with blame, shame, and accusations of lack of faith, I had nowhere to turn for help once I was released from the 24 hour hold. None of the health professions hooked me up with outside support. I was just put back into the same situation, the same nightmare of abuse and trying to be worthy of my children.

“Filled with blame, shame, and accusations of lack of faith, I had nowhere to turn for help.”

Looking back, there were so many warning signs. It’s amazing how well I avoided recognizing my spiral into hopelessness. The abuse I lived with daily throughout my marriage, including threats of not waking up in the morning, played a large part in my hopelessness. My background with depression started in middle school, as well as constant pain from undiagnosed diseases, and daily bullying both at home and at school added to my struggles.

Hopelessness is what a person who commits suicide dies from — the bone deep feeling of aloneness. The feeling your loved ones would be better off without you around is what drives most suicide attempts. Depression, self loathing, hateful inner dialogues, and abuse all contribute to hopelessness.

“Hopelessness is what a person who commits suicide dies from — the bone deep feeling of aloneness.”

Suicide isn’t attention seeking. Suicide isn’t a cry for help. Suicide is the result of hopelessness — of a soul dying.

In a study done by NIH covering the 2001-2015 period, rural counties consistently had higher suicide rates than metropolitan counties. The study also concluded suicide is the tenth leading cause of death in the United States. There were more than half a million suicides during the study period.

“…suicide is the tenth leading cause of death in the United States.”

According to the Veterans’ Administration, recent statistical studies show that rates of veteran suicide are much higher than previously thought, as much as five to eight thousand a year or about 22 a day. PTSD, depression, and lack of mental care follow up after discharge all play a part in veteran suicide rates. Vets finally got some hope of the help they need when President Trump signed an executive order to provide more benefits to service members transitioning from the military to civilian life in an effort to decrease veteran suicides on January 9, 2018.

Older veterans face a higher risk of suicide, the data showed. In 2014, about 65 percent of veterans who died from suicide were 50 years or older.

Warning signs for suicide, according to suicide.org include:

Appearing depressed or sad most of the time. (Untreated depression is the number one cause for suicide.)
Talking or writing about death or suicide.
Withdrawing from family and friends.
Feeling hopeless.
Feeling helpless.
Feeling strong anger or rage.
Feeling trapped — like there is no way out of a situation.
Experiencing dramatic mood changes.
Abusing drugs or alcohol.
Exhibiting a change in personality.
Acting impulsively.
Losing interest in most activities.
Experiencing a change in sleeping habits.
Experiencing a change in eating habits.
Losing interest in most activities.
Performing poorly at work or in school.
Giving away prized possessions.
Writing a will.
Feeling excessive guilt or shame.
Acting recklessly.

“You never know whose life you might save!”

PLEASE watch those around you. You never know whose life you might save! Tell the people you care about how you feel. Talk to your children and their friends openly and let them know you are someone safe to talk to about anything. If you see someone hurting, don’t ignore it — ask about how they are doing and show you really care. Watch people’s body language when they talk. Look for signs of discomfort like lowered eyes, crossed arms, or fidgeting when you are talking with someone.

Most of all, talk to listen and not to answer.

Hey y’all, I’m Wanda and I’m a Spoonie in my late 40s. I have several chronic illnesses I battle daily. I’ve raised two beautiful girls and have a wonderful service dog named Tucker. It is my hope to have shown and continue to show the world a face of chronic illness who chooses to become BETTER instead of BITTER.

September 28, 2017August 12, 2019

Five Things I Don’t Admit On My Bad Days

Have you ever had a day when you just stared off into space? Not staring and thinking deep thoughts about your future, but empty. Random thoughts floating around occasionally, but nothing coherent. And definitely nothing cheerful!

This is the place I am in right now. My brain has just shut down. The chronic illness has become too much to handle at this point and my brain went bye-bye.

So, I thought I’d let you into the taboo side of pain and chronic illness. The stuff we -or at least I- really don’t want to admit. The thoughts we have when our brain and body are at their lowest.

1) I am tired.

That’s why my brain shut down. Fighting pain is hard, and those of us in daily pain don’t ever get to rest. The constant struggle of trying to stay physically in control of our pain is draining. Add to that the daily demands of running a home, a career, or raising kids and you have the perfect storm for extreme fatigue. Add extreme frustration and we crack. And it doesn’t necessarily matter who gets in the way when it happens-sorry!

2) I am sad.

Because I am in pain and I cannot control it or my reactions today. But life goes on. So does family discord. My husband and I are no different. And to be honest, I don’t always have the fortitude to deal with it, whether it’s about a burnt dinner or the several hundred bucks he just lost at the casino. I’ll end up in a puddle of tears. Pain makes everything personal and much more intense. So the small stuff becomes huge and nastiness gets easier.

3) I am depressed.

It’s hard to stay positive and accepting of a disease that causes so much pain, weakness, degeneration, loss, forgetfulness, uncertainty… I could go on, but you get the point. Obviously, I have accepted my chronic illness, but these diseases are progressive and constantly change over time, so we have to constantly readjust our acceptance of what they have done to us. But the feelings that go along with this process have to be experienced as well.

4) I am confused.

And confusion is very frustrating. You see, my body remembers everything it used to be able to do. From dancing to hiking through the woods to carrying stuff up and down stairs. So sometimes, I still think I am capable and try to do things expecting that I will still be able to. And, at this point, I usually can’t, which has really just caused me more problems.

5) I want to give up.

I know the facts about my disease. I know what my back injuries mean. I know what the future probabilities are for my disease progression and pain management. And I worry about where I will end up when I can’t care for myself. I worry because I am alone a lot already. And I’m scared. I think about giving up a lot, too. I don’t talk about it, but I think about it. We all do. It’s a way to end the pain. It’s just not a good one.

In the end, when my brain gets like this, what I really need is some sort of regeneration. It’s too easy to continue that downward slide when we acknowledge our dark side. So here are some ideas for pick-me-ups after your day or so working through the harder emotions having chronic illness brings to us all.

Watch a mindless funny movie -my fave is Zoolander!

Find funny fail shows on TV-I so love dumb criminals!

Watch kittens on YouTube-you must admit cats getting scared of hair clips is hilarious!

Bundle up and rest with aroma lotions and tea!

And remember: these “lost brain” days don’t last forever, they’re not as common as they may seem, and they do not control you. After 20+ years of this, the silver lining seems to be the fact that by letting these days happen, you allow for a mental reset. The negativity gets acknowledged, then let go. And that’s exactly what needs to happen in the long run!

ABOUT THE AUTHOR:

Born and raised in Rochester NY, I was diagnosed with Sjogren’s 4 months after my second son was born. My kids are now 21 and 23 years old. I have since developed MCTD, Inflammitory Arthritis, and Fibromyalgia. My medications, in turn, have caused me to endure two back fractures. I raised my kids, worked a career for over 30 years, and been a wife to my husband of 27 years all while being diagnosed with an autoimmune disease for 22 of them. I can no longer work but I do volunteer at an animal rescue organization as a kitten cuddler and I write about my experiences with my diseases while wrangling our one rescue dog and three rescue cats.