12 chronic pain memes

Can you imagine being in pain every single day? I hope you can not.

For those of you living with chronic pain, these memes will be relatable.

Where are you on a scale of 1 to 10?

The pain scale is very subjective. Somebody who has never had pain before may say they are at an 8, while a person living with chronic pain will measure their 8 at a 5. Because they have lived with pain at level 12. It’s all what you are used to, and what you can compare it to.

Hobbling away!
Need my sunglasses and a protective shield!

This happy looking little monster is called Penny. She lives with chronic pain too. She tries to make the best of life with her friends in Chargieville, the universe where she lives. There are more creatures like her there. With different ailments, take a peek over here

Where does it hurt?

Chronic pain is invisible, it’s hard that other people can’t see it. But on the other hand, maybe it’s for the best.

Are you tired of hearing about it? I’m tired of feeling it!

You are a warrior, living with chronic pain and smiling at the same time.


Rating your pain on a scale of 1-10 is tough. Deciding which pain to talk about is also an issue. There are so many different types of pain you can feel at the same time.

Are you a chargie?

Done ith this for today. I’ll be in hiding. Thanks for being here.

The implications of Having a Sitting Disability While in Public (My Personal Experience)

The term 'sitting disability' is unfortunately not well known or recognised. I myself didn't know this term until early this year, despite me having had trouble sitting for over 12 years. Issues with sitting are often an invisible disability, which can mean it's easily overlooked by people who don't experience it. Sitting disabilities can have many causes, mine is the result of pain in my lower back and hips caused by Fibromyalgia and muscle tightening in my back.

A sitting disability occurs when someone finds it difficult to sit or is unable to sit entirely. This is usually due to experiencing pain. You don’t have to have any other chronic issues or disabilities to experience a sitting disability, however, many people can experience both chronic illness and sitting disabilities simultaneously. The term ‘sitting disability’ is unfortunately not well known or recognized. I myself didn’t know this term until early this year, despite me having had trouble sitting for over 12 years. Issues with sitting are often an invisible disability, which can mean it’s easily overlooked by people who don’t experience it. Sitting disabilities can have many causes, mine is the result of pain in my lower back and hips caused by Fibromyalgia and muscle tightening in my back. 

Whether I'm sitting on the couch, traveling on public transport, going to the movies, or sitting in class; I have to be mindful of how my body is positioned and how I can minimize my pain levels, otherwise my back could end up being in serious, constant pain for the rest of the day and I can end up very exhausted.

I do not consider my sitting disability to be on the severe end of the scale by any means, yet it impacts every second of my life. Whether I’m sitting on the couch, traveling on public transport, going to the movies, or sitting in class; I have to be mindful of how my body is positioned and how I can minimize my pain levels, otherwise my back could end up being in serious, constant pain for the rest of the day and I can end up very exhausted.

Mobility Issues Are Not Cancelled Out By Sitting Disabilities

Things become even more complicated when you have a sitting disability as well as issues standing and walking. It can be difficult having to explain to people why you have difficulty both sitting and standing for long periods of time, and how one isn’t the solution to the other. For example, I was discussing future career options with someone I knew. They knew I had mobility issues, so they suggested I become a truck driver. They said this was the solution to my problems because I would be sitting for hours on end and wouldn’t have to get up and move around often. As I explained that I couldn’t sit for long periods of time either, this person became more and more perplexed. Likewise, a job where I’m walking around a lot and barely sit wouldn’t work for me either. I’d have to find a way to balance the two and minimize my pain levels as much as possible.

Experiencing a Sitting Disability Throughout Childhood

When I attended primary school, we used to have to sit on a wooden floor in the gym for assemblies. This would cause me a lot of pain in my lower back and hips as well as numbness in my legs, so I started sitting with a cushion between me and the floor instead of directly on the hard floor between the ages of 9 and 12. This made sitting on the floor a bit more bearable but didn’t take away the discomfort. Sitting on a cushion when other students did not made me different, which as you can imagine left me open to teasing and bullying from my peers. Even once I entered high school and no longer had to worry about sitting on the floor as often, students who attended the same primary school as me would point at me and say things like “that’s the girl who sat on a cushion” with a malicious undertone.

When I attended primary school, we used to have to sit on a wooden floor in the gym for assemblies. This would cause me a lot of pain in my lower back and hips as well as numbness in my legs, so I started sitting with a cushion between me and the floor instead of directly on the hard floor between the ages of 9 and 12. This made sitting on the floor a bit more bearable but didn't take away the discomfort. Sitting on a cushion when other students did not made me different, which as you can imagine left me open to teasing and bullying from my peers

Road trips were also (and still are) very difficult for me. Along with family holidays, there were also school trips and sports camps. While my family quickly learned how to make road trips easier for me (and therefore the family as a whole) by doing things such as taking breaks more often and letting me have the seat with the most room, school, and sports trips were a lot less flexible since there were other kids and adults to worry about. For these situations, I made sure to have a pillow/cushion on me for lower back support and my pain meds in an accessible place.

Public Transport

For people with severe sitting disability, public transport such as trains, busses, and planes can be practically inaccessible. 

For people with severe sitting disability, public transport such as trains, busses, and planes can be practically inaccessible.

I travel two and a half hours each direction by public transport to attend university across the city. As you can imagine this is not ideal for someone with a sitting disability. In order to get through the trips with as little pain as possible, I try to sit on the right side of the bus or train so I can lean against the wall for support. Then if the seat next to me is free I tuck my right foot up under my left thigh on the seat, which can take up a bit of the seat next to me. This is the position that causes me the least amount of pain. I try to be as mindful of the people around me as possible, so if the train or bus is full I’ll sit normally, despite the near agony it causes me. Despite the fact that I need to sit in this position in order to be able to get through the day, I often receive dirty looks, and sometimes the train managers will tell me to get my foot down. Whenever this occurs, I comply with the train manager because it seems like that will take less effort than trying to explain my situation to them. However, whenever I do sit in a “normal” position for any length of time, I end up in a lot of pain and become shaky and tired. It doesn’t go away once I stand up, either. So, I can end up feeling like that for the rest of the day.

I’ve found the only time I haven’t received any ridicule for sitting with a leg on the seat is when I had an ankle injury and had a moon boot on. The moon boot acted as a visible symbol that I was having trouble sitting in a specific position, whereas without it people assume there is no issue, which couldn’t be further from the truth.

At University

After traveling for two and a half hours, 90% of which is spent sitting, my back is often already stiff, sensitive, sore, or all three. Sitting in classes that are over an hour can be very difficult, especially if the chair is uncomfortable and has limited lower back support. This can also be an issue during exams. However, I’m very lucky to have the support of my university’s Disability Services, who do their best to provide me with supportive chairs in lectures and exams. These supportive chairs allow me to sit longer with less pain, however, do not take away the pain and exhaustion completely.

One of my favorite spaces at university is a room in the library which has bean bags. If I arrive at university early or am waiting between lectures, I enjoy sitting on bean bags because I can just sprawl there without having to support myself, which keeps the pain and exhaustion at bay.

Dealing with a sitting disability on its own is hard enough, however, it can become even more difficult when you have to deal with chronic illness on top of it. Sitting disabilities can make everyday activities become difficult and can make tasks that are supposed to be simple to become extremely tedious. While disability activism has and is making great strides in our society, there isn’t much awareness surrounding sitting disabilities, though I’m sure many people experience it in one form or another.

I’ve read a lot of horror stories about the way people with sitting disabilities have been treated in public and it hurts my heart. I’m lucky enough to not have experienced anything serious. Yet, I hope the spreading of awareness around sitting disabilities will prevent such conflicts happening in the future.

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

Cerebral Palsy – Independence Day Celebrations (The Impact It Has On Me)

Independence Day like many holidays is a cause for a celebration. A chance to have fun, catch up with family and friends. To eat, drink and enjoying spectacular fireworks displays. Sadly for those with chronic illnesses the thought of joining in on such celebrations can be scary. Crowds might be hard to navigate, the noise of the crowds can be overwhelming. Leaving many to choose not to get involved in the celebrations. For some like Tylia whose cerebral palsy is affected by fireworks the day is full of dread rather than joy.

I walked through a county courthouse square
On a park bench, an old man was sitting there
I said, your old courthouse is kinda run down
He said, naw, it’ll do for our little town
I said, your old flagpole has leaned a little bit
And that’s a ragged old flag you got hanging on it 

Ragged Old Flag – Johnny Cash
Cerebral Palsy, Fireworks & Independence Day Celebrations - The Impact It Has On Me

The only thing I like about July 4th is having an excuse to blast Johnny Cash music and get away with it but other than that I hate the holiday. Not because I don’t want to celebrate the fact that we have freedom an independent in this country, because the way it affects my cerebral palsy.

Fireworks Aren’t Fun For Cerebral Palsy

Although July 4th is a holiday where everyone honors and respects our countries freedom and our liberty I hate it because it reminds that I’m not like most 24 years old’s that go to BBQ’s with friends and family have a glass of jack Daniels and not worry about jumping or having a spastic attack.

For me It’s the fireworks that are the worst part of this holiday. The boom and pop as they go off! With each pop my brain starts to dread, dread what’s about to come and how bad it affects my mobility and cerebral palsy My body jumps and shakes as my pain begins to become more intense throughout my whole body and I’m the worst pain ever.  

People React Like I’m An Alien

As everybody stops and stares at me like I’m an alien from a different planet and it’s like could I help you yes, I have Cerebral Palsy and it makes my body, not like loud noises like fireworks. People always ask me aren’t you supposed to use that sound by now and I look at them with such anger like No Cerebral palsy and loud noises aren’t best friends!

t lowers my self-esteem and makes me question if I will ever be able to go out on a date on 4th of July.

Cerebral Palsy comes with other problems, it lowers my self-esteem and makes me question if I will ever be able to go out on a date on 4th of July. Or go out with my able-bodied friends on the fourth of July to go see the fireworks. Will I be keep my spasm and jumping attacks under control is something I wonder day in day out. 

It Doesn’t Stop Me Though

Although my cerebral palsy is affected by fireworks I continue to go out and celebrate our independence day so that I could see the world. Because I don’t want to live within my own thoughts and my own negative side of things and my life, for now, I’ll keep on trying to stomp on the challenges of fireworks.

About The Author

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.

When a Trusted Physician Closes the Door

Out of Practice - Closed Sign With Stethescope

For those with “invisible” illness, it’s difficult to find someone who believes you’re sick – not just depressed, not just anxious, not just tired – but sick.

These nonbelievers can be siblings, best friends, spouses, children, or acquaintances, but the ones who leave us most helpless are the doctors. Physicians who dismiss our illnesses make us vulnerable to exacerbation of symptoms and sometimes irreparable harm.

Maybe you know what I mean…

The doctor who believed me

You were never sick; always strong, productive, hopeful.  Now here you sit in one more exam room. How many has it been? How many white-coats have pressed a stethoscope to your chest, shone a light into your ears, nodded and wrinkled a brow in response to your long, long list of complaints? How many times have you sensed an internal eye roll? How many times have you witnessed one?  

the doctor who believed me

But then it happens. You find the doctor who really looks at you. Who nods, not merely to seem attentive, but to acknowledge that she gets it; understands what you’re saying; how you feel.

That happened for me nearly five years ago.

Ignoring symptoms

Lyme disease can take its time before finally making a stand. Mine was like that. Symptoms came and went for years. I didn’t have the experience of seeing a long line of physicians, but I should have. I was just too hard-headed to go. As a nurse, I worked with doctors and didn’t wish to be at their mercy any more than I already was. So, I dealt with it.

Okay, I ignored it. I did my level best, anyway. I ignored the joint pain, the panic attacks, the sleeplessness, the flu-like feeling. The soles of my feet were like raw ground meat, so I bought shoes with more cushion and sat down more often. My brain, eyes, and ears didn’t like light or noise, so I wore earplugs and stopped going to movies and malls. I ignored it all until I couldn’t. In my defense, it’s tough to ignore two weeks of vomiting, chills, fever, and diarrhea.

ignoring symptoms

Blaming parasites for my symptoms

At the time, an intestinal parasite-harboring bagged lettuce was in the news. I told my doctor that was likely my problem. Accepting my diagnosis, he prescribed the antibiotic I requested and seemed happy to spend no more than five minutes with me, order a single lab test, assure me he was impressed I’d managed to stay slim, and remind me to get up-to-date on all my “woman stuff.” Which I did.

Following that intestinal inconvenience, I began to decline until pretending became too much. My mind was going. I couldn’t remember the way home from work, how to get there, or why I was even in my car. I started trying to open doors with my cell phone, turn my dryer on with the light switch. My ears were ringing, my head hurt, the right side of my face was sliding downward. My rib cage burned; my muscles twitched, ached, and jerked. I could barely walk. Everything either hurt, malfunctioned, or both.

But it may have been the fatigue that finally pushed me over the edge. Maybe it was the day I fell asleep in a patient’s home while interviewing her. Or, maybe it was the second time that happened. I’m stubborn and that’s not a symptom of my disease.  

Luckily for me, the iron pill prescribed for my nine-point-something hemoglobin made me sick. That tiny, forest-green tablet bullied me into action and through the right door.

Finally being listened to

My new doctor’s practice had a name – not just doctor so-and-so. I won’t give the name here. I’ll just call it True Health. It was in an old brick building, in a tiny town I’d been to, maybe once in my life, but I had a patient visit there, and afterward saw the sign. I thought it was a health food store and decided to look them up, hoping they’d have an iron supplement I could endure. Turns out they did – and a whole lot more.

I’d never heard of functional medicine. Entrenched in the industry we misguidedly call “healthcare,” “ill-care” was what I actually did for a living – managed peoples’ illnesses; tried with pills and pills to keep symptoms at bay. It’s all I knew. But since functioning had become a problem, I thought I’d give this new approach a try.

Getting the diagnosis Lyme disease

Seeing a functional medicine practitioner is something else. Before your first visit, you complete a two-hour questionnaire – much of it consisting of inquiries into your bowel habits. The idea that my first visit was to last an hour and a half was jaw-dropping, but it was the first fifteen minutes that left me stunned. Turned out he was an expert in the disease, I didn’t know I had. When he said, “I think you have Lyme disease.” All I could do was repeat, “Lyme disease?”

Then he handed me another questionnaire – this one, Lyme-specific.

Lyme specific checklist

I passed with a very high score. Like most healthcare providers, I knew nothing of Lyme. I’d hobbled across the street and into his office that day, burdened by thoughts of Lupus, Multiple Sclerosis, Alzheimer’s – these were among the possible diagnosis I expected to hear. When I didn’t, I thought I’d gotten off easy. But, as I said, I didn’t know anything about Lyme.  

I recall bits and pieces of that day, but his words, as he left the examination room, imprinted on my mind. I have held on to them for all these years, through unspeakably difficult days. His hand on the knob, he turned back and said, “You know, a lot of people want to make you feel crazy for what you’re going through, but we don’t want that for you. We just want you to get better.”

That hope, expressed by someone who had the ability to help me realize it, pulled me out from under the fear. Until that day, I hadn’t told anyone how I was feeling head-to-toe. I’d tossed out phrases like, “I’m so tired,” or, “I feel achy,” always shaking my head, baffled by my body’s failings. But how could I begin to list the thousand and one complaints in casual conversation? Even I thought I was losing it. Even I wondered if I just wanted attention or to get out of work. Maybe I didn’t want to hear the assurances that these things happened to women of a certain age or to women because they are, well, women.

There were many reasons I kept it to myself, but when he said that, I felt something break open; sorrow and relief rushed in together. I found confusion and clarity, peace and uncertainty. I was a jumble of emotions, but it was the comfort and compassion, the understanding and assurance – all the things a sick person needs, things I hadn’t yet admitted to needing – I found those things in abundance at that place, enough to deal with what lie ahead.

The doors are gonna close…

That place will soon be gone. My doctor’s practice closes the end of the year.

Out of Practice - Closed Sign With Stethescope

The word I’ve heard most from his other patients has been “devastating,” I concur. It is a blow, a punch in the gut. The day I found out, I sensed a snap, the cord from life raft to ship had been cut. Adrift, unsure, alone, we all panicked; found ourselves floating in a fog with multiple, but untested, paths on all sides.  

What’s the big deal? Find another doctor people said; recommendations filled my message boxes and social media feeds. But those of us with Lyme know some things most don’t. Someone with an accepted, well-researched condition might think finding a great doctor isn’t too complicated, but Lyme is, in a way, illegal. Our doctors are few and far between because the risk of giving us as many antibiotics as someone with — say acne — is high. Lyme doctors can be shut down by a complaint from an insurance company or the health department for “over-treating.” They have lost their licenses because of us.  

So, we all scrambled. We googled; talked back and forth. “Have you heard of so-and-so in such-and-such town? His he any good? Does she take insurance? Does he treat with antibiotics, herbals, or both? How much is the first visit? My friend saw that doctor. He was horrible – she almost died! Ugh, that’s three hours from me. Bleh, that’s a six-hour drive. First visit is how much?! Yikes!” On and on it went, all of us forced to begin again or give up.

My safety net, gone.

My doctor was a safety net. I had settled in and expected to stay until I was well. When his doors close, I must start over. He won’t be the only one out of practice. It’s been a long time since I’ve had to tell this tale from the beginning; since I’ve had to complete a new patient form or use my GPS to find my healthcare provider.  

It’s been four and a half years since I’ve had to feel nervous; uncertain about whether the person sitting across from me had my best in mind. I don’t want to wring my hands and avoid eye contact while I call out my myriad of physical aches and pains, my neurological disturbances. I dread sitting alone in a foreign and sterile room, unable to concentrate on the book in my lap, instead staring at soap dispensers, tissue boxes, sinks, and paper-covered exam tables — anything to look casual and relaxed, to not be caught wide-eyeing the door when my new practitioner walks in. Like a weathered sea captain taking sailing lessons or Jack Niklaus signing up for golf camp at the local YMCA, I don’t want to be a new patient because I am an old, experienced one.

New patient visits cost a lot of money. You have to pay the hefty first-visit price, adopted now, by most Lyme-literate MD’s. Some of them, at rates between five hundred to a thousand dollars, or more. Since there is no established treatment protocol for Lyme, your new doctor will try things — supplements, herbals, compounded capsules, untested intravenous therapies. All of these things will be costly, none will be covered; your doctor will not accept insurance. You’ll pray no one else in your family needs medical care.

Expensive treatment

 A new physician will, and should, run tests. Such a multitude of complaints warrants a broad array of diagnostic procedures. If your previous results are not recent, or this doctor prefers a different lab or method, you’ll be subjected to many needle sticks and scans of things. You may be referred to specialists until every week of every month you are committed to a doctor’s appointment. You’ll find ways to make it bearable – treat yourself — a grown-up version of the proverbial post-doctor lollipop. When I see my primary care, I’ll swing by a favorite upscale thrift store; when I see my neurologist, I’ll get a smoothie, my thyroid doctor, a gluten-free, grain-free, sugar-free, dairy-free lunch that I’ll eat beside a nearby lake.

If you choose a doctor not trained in Lyme disease, you’ll save cash but have a lot of explaining to do. As you relay your symptoms, your new doctor may become alarmed. He may wonder why you haven’t already been to a rheumatologist, neurologist, endocrinologist, allergist, sleep specialist, physical therapist, and on and on. She may be puzzled by your cavalier demeanor, the way you shrug when describing the sudden numbness to the right side of your body, or your occasional loss of vision in one eye. He may attribute your neck stiffness to poor sleep posture instead of a coinfection like Babesia or Bartonella. Same for your night sweats, those will be, most likely, if you’re a woman, due to womanhood. She will not have been taught to consider infectious disease as the root cause. You may have to bring documentation – peer reviewed studies that demonstrate the true nature of Lyme, that explain it as a collection of infections, not just one; the way it persists in the body, an ongoing, active contagion lying in wait. You’d better bring this paper work wrapped in humility and pray he is willing to learn from you.

Where do I go now?

Being long-time sick, has worn away some of my stubbornness. I am giving in, making a list of those after-doctor treats. I know I was spoiled to have stumbled upon the right doctor that day; to have had one provider who understood he couldn’t send me to specialists who didn’t believe in the thing that was making me sick. I was blessed, on my second attempt, to find the help and wisdom I needed to get better. I know that what’s ahead for me is what many with my condition have tolerated their whole lives, and so, I find myself again, breaking open on the inside; once more a jumble of feelings. Hope will show up, but right now grief wins the day. I am succumbing to a path in life I did not and would not have chosen.

Where to go now?

We all know the comfort of familiarity, of coming home after a hard day’s work, a funeral, a long trip. We see our favorite chair, our pillow; tune in to the sounds – the ones we don’t always notice because they’re always there, a refrigerator’s hum, a clock’s tick, a dog’s soft snores. A doctor’s office can be a place like that when you’re sick for a long time. After a hard month of pain, memory loss, shortness of breath, exhaustion, a familiar caregiver can be a welcome sight, can release a contented sigh borne of trust. It can be a place where you anticipate, with relief, the opening of an exam room door; where you know you’ll leave encouraged.

Once you know a doctor is listening; that he hears you and cares, you let yourself believe he wants what you want, to see you walking tall and strong, hiking the old trails, pumping the pedals of your bike. And so, you tell him your story. You start at the beginning and each visit you speak to him the middle, all that’s happening in your right-now. You’ve no doubt he will be with you at the end, bringing this affliction to a resolution of wellness.

But his role has ended. He has stepped out of your story, and you’ve no choice but to bring in a replacement; to put on the brakes, slip into reverse, and start over.

I’ve put my life in the hands of my doctor

We’ve all heard people say it, that they put their lives in the hands of a doctor. I did. Not consciously, but in that room for the first time, I lay down the weight of all I used to be and now was not, could not; all I wished to be and do again. And he had willingly picked it up; lifted my burden. In that place, I had a safe room where someone wanted me to tell what hurt, where I would be validated; find healing, a place I could express my fear that I would forever be unable.

As his practice ends, mine starts over. I’m not sure if this will be the commencement of a whole new marathon, or just a long, steep incline in the middle of the same endless route. But I’m breaking out my equipment: My long list of medications and symptoms, treatments that worked and the ones that failed. I don’t feel ready, but I’ll narrate, once more, the longest story of my life and hope that my new doctor will really, truly just want me to get better.

Amy Estoye is many things — wife, mother, sister, daughter. She is a writer, reader, hiker, cycler, gardener, and photographer.  She has had Lyme disease for many years and now shares her story with others in hopes of creating community among sufferers as well as educating those who love someone with Lyme. You can connect with her on social media and find out what it feels like to have Lyme disease on her blog: http://lymefeelslikethis.com/

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.”

Anxiety from sitting on the sidelinesFor 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…”

Anxiety from the chronic pain of cerebral palsyIt’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 writes about anxiety and cerebral palsy.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.

Rare Disease Spotlight- Janelle’s Battle with Mitochondrial Disease

Mitochondria are the energy makers in our body. We all learned in high school that the mitochondria are the “power houses’ of the cell. But sometimes, genetic mutations occur in these “power houses” and cause chronic disorders that occur when the mitochondria fails to produce enough energy for the body to work appropriately.

Mitochondrial disease can affect the cells of the brain, nerves, muscles, kidneys, heart, liver, eyes, ears or pancreas. Mitochondrial diseases include autism, Parkinson’s disease, Alzheimer’s disease, muscular dystrophy, Lou Gehrig’s disease, diabetes, and cancer. One in 5,000 individuals has a mitochondrial disease. Each year, about 1,000 to 4,000 children in the United States are born with a mitochondrial disease.   – (Source Cleveland Clinic)

This Janelle’s story.

She has bravely fought mitochondrial disease for 27 years.

Janelle was born with genetic mitochondrial disease. She spent a great deal of her young life in the hospital. Mitochondrial disease can impact people in various, different ways. Janelle’s form of this disease vastly impacts her muscles and her gastric function. She was unable to eat solid food until the age of three. Since her body does not function properly, she has to rely on a broviac tube and port to give her life sustaining nutrients and medication. She struggles with neuropathy, cyclic vomiting, fatigue and malabsorption issues. Her gastric function is so compromised that she frequently becomes dehydrated and malnourished. The veins in her body literally collapse from the lack of necessary nutrients and hydration. The only solid foods she can eat are potatoes. Janelle’s diet is mainly comprised of chicken broth.

Janelle is sharing her story because she wants people to know that Mitochondrial disease may be invisible but it is very real.  We have lost more children from mitochondrial disease than we have to childhood cancer. Rare disease awareness is necessary.

Symptoms of mitochondrial disease-

(Source- Cleveland Clinic)

  • Poor growth
  • Muscle weakness, muscle pain, low muscle tone, exercise intolerance
  • Vision and/or hearing problems
  • Learning disabilities, delays in development, mental retardation
  • Autism, autism-like features
  • Heart, liver or kidney diseases
  • Gastrointestinal disorders, swallowing difficulties, diarrhea or constipation, unexplained vomiting, cramping, reflux
  • Diabetes
  • Increased risk of infection
  • Neurological problems, seizures, migraines, strokes
  • Movement disorders
  • Thyroid problems
  • Respiratory problems
  • Lactic acidosis
  • Dementia

(These are not all inclusive, every person may not have every symptom. Mitochondrial disease has many different types, forms and origins)

Janelle may fight a difficult battle against this disease, but she is still determined to enjoy her life. She finds happiness by spending time with her family and especially enjoys playing with her nieces and nephews. She also enjoys cheerleading and tries to stay as active as her health allows. She has many friends and the children’s book, The Shivering Sunbeam was dedicated her. She is passionate about helping others realize that even though they may be battling a tough disease, they can still be happy.


I am going to stay positive even though it’s been very rough and difficult.  I have to fight for my life. I am not going to give up on hope or faith.    Janelle says.



If you or someone you know is battling a rare disease, please know you are not alone. The UnChargeables are here to support you. We will never stop advocating for every chronic illness patient, even the rare ones!

Rare disease awareness is necessary because you never know who may be battling an unknown health issue. Rare doesn’t mean impossible.

You are not alone! Keep fighting.


Would you like to share your rare disease story? Contact us!



Understanding Endometriosis

Endometrosis is a condition in which the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus and spreads to other parts of the body.  Symptoms can be menstrual cramps, lower abdominal pressure, irregular menstrual periods, heavy/painful periods, infertility and miscarriage.

The condition range from mild and painless to extremely debilitating.

The only way to officially diagnose this condition is by surgical discovery, as endometrial cells do not show up on ultrasound.

Endometriomas may also develop with this condition. Endometriomas are a type of cyst formed when endometrial tissue grows in the ovaries.

Endometrioma can also be referred to as an endometrioid cysts. These can cause excess bleeding, severe pain and affect fertility.

If you are having painful cycles, consult your gynecologist.

The treatment for endometriosis is typically oral hormone therapy with contraceptive medication (birth control pills).

There are also alternative treatments such as bio-identical hormone therapy-  progesterone cream or Hormone Pellet Therapy.

Ovarian cysts in normal women typically occur and go away on their own, but sometimes in women with endometriosis these cysts become endometriomas which may have to be surgically removed.

Please have regular ultrasounds if you have been diagnosed with endometriosis.


Also, please be aware of your hormone levels. Estrogen Dominance is common in women with endometriosis, PCOS and auto-immune disorders.  Your doctor can order a lab called a “female hormone panel.”

Avoid soy products if you are estrogen dominant, as these are phytoestrogens and can cause hormones to be disrupted.


This disease affects different women in different ways, but the most consistent symptoms are painful periods, painful intercourse, heavy bleeding,  pelvic pain/tenderness and infertility.

Hormonal disturbances such as hot flashes, breast tenderness and emotional mood swings have also been contraindicated.

If you are struggling, please consult your gynocologist.



Full medical description of Endometriomas

Full medical description of Endometriosis


Personal Note-

I suffered from severely painful menstrual cycles since the onset of puberty at 12 years old. I would bleed for weeks at a time, sometimes have cycles that lasted for months. I saw multiple gynecologists throughout my teenage years and suffered through many horrific periods and different birth control pills, patches and hormone adjustments. I finally found a physician willing to listen to me and at 18 years old, I had a diagnostic pelvic D & C  because the doctor was sure I had endometriosis. His diagnosis was confirmed and I had stage 4 endometrosis removed. I was put on hormone therapy after that, but it caused my migraines to increase and I could not stay on them. I went unmedicated for years and the endometriosis returned with a vengeance. At 22 years old, I started having absolutely debilitating pelvic pain. I went to the emergency room and discovered I had a cyst on my left ovary. They told me it would go away. In normal women it does…..mine did not.

I suffered with it for a year. Just accepted it was a part of life and lived off of advil. I had kidney stones too, so I was used to being in pain.  My health was declining anyhow at the time. (I had undiagnosed adrenal failure)

I went on a trip to Myrtle beach, SC and spend the entire day in the ocean. Later that night, I had a sudden, sharp pain that was horrific. I knew something was wrong. I called my GYN and as soon as I got home had an ultrasound. The ultrasound showed I had a large endometrioma.  When my GYN got the ultrasound result, he told me my ovary was damaged and needed to be removed.

I ended up having that surgery and got an IUD to prevent the endometriosis from returning.

Fast forward 3 years, I’ve had 2 more surgeries since then and am scheduled to have a hysterectomy this coming week. I have aggressive endometriosis. I have had so many endometriomas that just won’t seem to stay away. I am also estrogen dominant.  My grandmother passed away from endometrial cancer.  Every single one of my dad’s sisters have had to have a hysterectomy before age 30. It runs strong in my genetics.  It is tragic? Yeah. I wanted to be a mother, but the risk of cancer and the pain is just too high.

My message is this-


If your periods are lasting longer than 7 days, something is WRONG.

Keep an eye on your iron levels.

See your GYN.


Wishing you all hope and healing

Love, Win <3

This post is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment.

I am NOT a doctor, nor do I claim to be. I am simply a woman who has done much research to understand disease and seeks to help others understand as well.

Click to read more from  Winslow E. Dixon



10 Ways to Relax

Relaxing is a necessary part of managing chronic illness.  With our busy lives, sometimes it is difficult to find ways to settle down.


Here are ten ways to relax!


1- Take advantage of nature. Soak up the sunshine, listen to the rain, feel the wind.  Whatever the weather is;  Open a window and get some fresh air.

2- Listen to a happy song.   (Examples of songs for every mood here Ultimate Chronic Illness Playlist  )

3- Focus on a happy memory. You may be stuck at work, but you can always go to a happy place in your mind. Think about a wonderful experience you’ve had in your life.

4- Take a hot bath. Epson salt soaks are amazing for relaxation and can aid in pain relief.

5- Watch a funny movie or TV show. A little distraction can help you relax!

6- Spend time with a loved one. A few hours with your best friend can make the world look a whole lot brighter.

7- Take some time to indulge yourself.   Put on your favorite comfy clothes, drink some warm tea,  put some make up on- anything to pamper yourself.

8- Read a good book. You can always escape to another world with literature.

9- Snuggle with your partner.  Hugs release the chemical oxytocin, which aids in stress regulation and can lower pain levels as well.  Don’t have  partner? Single?  Cuddling with a pet can reduce stress too. Grab that cute little dog or cat of yours and curl up on the couch!

10-  Singing or dancing.  Even if you have zero talent- these are great ways to reduce anxiety and to boost your mood.

If you are not physically able to dance, singing can lift your spirits!  Like the disney princesses- sometimes it’s fun to sing a long with whatever you are doing!

If you are able to dance- EVERYBODY LOVES the MACARENA! 🙂


I hope some of these tips help you relax.

Wishing everyone hope & healing  <3

Love, Win

To read more you can click here Winslow E. Dixon

Complex Regional Pain Syndrome

Pain Image 1


What is Complex Regional Pain Syndrome?

By Lisa Hurley


Complex Regional Pain Syndrome (CRPS) is a rare, progressive,  neuropathic condition related to peripheral nerve injuries. It is considered to be the most painful chronic pain condition known to modern medicine.  CRPS has historically been known as Algodystrophy, Causalgia, Neurodystrophy, Post-traumatic Dystrophy, Reflex Neurovascular Dystrophy (RND), Reflex Sympathetic Dystrophy (RSD), and Sudek’s Atrophy, however the International Association for the Study of Pain has standardized the name to Complex Regional Pain Syndrome in order to simplify and standardize diagnoses but you will sometimes still hear the disorder called by these alternate terms today.


The precise number of CRPS sufferers is unknown, however Physiopedia.com estimates that the syndrome affects 26 of every 100,000 people. Although CRPS can occur anywhere in the body, it is most frequently diagnosed in the extremities such as arms, hands, legs, and feet.

Pain Image 1

What causes CRPS?

In most cases, the condition is caused by some form of physical trauma to the body that adversely affects the peripheral nervous system. For example crush injuries, blunt or sharp-force trauma, prolonged immobilization, surgery, amputations, fractures, falls, strokes, heart attacks, or even bad sprains can result in a patient developing Complex Regional Pain Syndrome.

There are still some cases of CRPS that are not the result of either trauma or an identifiable nerve injury. These are most often attributed to an exaggerated immune system or inflammatory response.

Are there risk factors?

According to the National Library of Medicine at the U.S. National Institue of Health (NLM/NIH), risk factors for the condition can include ACE-inhibitor therapy, asthma, elevated intracast pressure, migraine, menopause, and osteoporosis. In addition, smokers are likely to have a higher risk factor vs. non-smokers.

Who gets CRPS?

There are no known age, gender, or genetic restrictions on who can develop CRPS, but the condition occurs most frequently in people ranging in age from the mid-30s to early 40s, and is three times more likely to occur in women than men. CRPS is rare among very young children (under 5 years old), and in the elderly (over 70 years old).

Types of CRPS

There are two major forms of CRPS: Type 1 and Type 2. Both types occur most frequently in the extremities of the body, although there have been cases of the condition spreading to other areas. The main difference between the two forms lies in how they develop:

     Type 1 CRPS occurs after an injury or illness that did not directly damage the nerves in the affected limb; that is, trauma occurs remotely from the affected area. This form of the condition used to be known as Reflex Sympathetic Dystrophy Syndrome. This is the most frequently occurring form of the condition.

     Type 2 CRPS results from a direct injury to a major nerve of the affected limb. This form of the condition used to be known as Causalgia, and is more rare than Type 1.

What are the symptoms of CRPS?

As its name implies, Complex Regional Pain Syndrome is characterized by a variety of symptoms, including but not limited to pain (clearly), sensory disturbances, autonomic disorders, inflammatory responses, trophic changes, and motor dysfunction:

  • Pain
  • Burning, neuropathic, dull, spontaneous and/or constant. Sometimes triggered by movement, pressure, or loud noises.
  • Sensory Disturbances
  • Allodynia, or pain from stimuli that ordinarily would not cause pain. Allodynia can be tactile, thermal, or mechanical.
  • Hyperalgesia (Patient becomes more sensitive to painful stimuli due to the use of opiod pain medication.)
  • Hypersensitivity of the skin, even to very light touch/sensation from stimuli such as air or feathers.
  • Autonomic Disorders
  • Color changes is skin (very red, or very pale).
  • Hyperhidrosis (excessive sweating) and other changes in perspiration.
  • Cold, clammy skin on the affected limb.
  • Abnormal blood flow to the skin of the affected area
  • Inflammatory Responses
  • Increased temperature.
  • Edema.
  • Swelling.
  • Erythema (reddening of the skin).
  • Trophic Changes
  • Hair growth markedly increases or decreases.
  • Nails become thick and brittle nails.
  • Skin becomes smooth, clammy, thin, mottled.
  • Fibrosis.
  • Osteoporosis.
  • Acute arthritis.
  • Motor Dysfunction
  • Muscle weakness and stiffness.
  • Reduced range of motion.
  • Tremor.
  • Stiffness.
  • Atrophy.
  • Dystonia (involuntary muscle spasm).
  • Loss of the ability to move the affected limb.

What are the Stages of CRPS

The syndrome typically develops in three phases:


Stage 1 usually begins a few days after the trauma, injury or surgery, and lasts up to six months. It is characterized by:

  • extreme pain
  • a burning or aching sensation
  • edema
  • accelerated growth of the nails and hair
  • changes in skin color & temperature


Stage 2 usually begins three to six months after the initial onset of pain, and lasts for about six months. Symptoms             during this phase include:

  • increased, constant pain
  • reduced muscle tone
  • joint stiffness
  • rigid, thinning nails
  • osteoporosis


Stage 3 typically starts six to twelve months after the initial experience of pain. This stage can last for years, and there is     also the possibility that the condition might resolve and reappear later. This phase is characterized by:

  • Stiffer joints
  • Pain over a wider area of the body
  • A plateau in pain intensity
  • Stiffness/immobility of the affected limb
  • Additional loss of muscle tone
  • Contractures
  • Cool, thin, dry skin

What does CRPS pain feel like?

In terms of intensity, CRPS pain is ranked 42 out of 50 on the McGill Pain Scale—more painful than having a finger amputated without anesthesia.

In terms of sensation, many CRPS sufferers describe the pain as being significantly out of proportion to the original injury. The pain is also described as intense, burning, and constant.


What Treatments are available for CRPS?


Treatment protocols for Complex Regional Pain Syndrome typically involve a synergistic combination of physical and occupational therapy, pain management/medical therapy, and psychological therapy, designed to reduce pain, increase mobility/function, and improve quality of life. This partial list of some therapies that have been used can serve as a reference that patients can use when consulting with their medical team:

  • Physical/Occupational Therapy
  • Contrast baths
  • TENS (Transcutaneous Electrical Nerve Stimulation)
  • Massage
  • Stretching
  • Ultrasound therapy
  • Isometric strengthening exercises
  • Gradual weight bearing/stress loading
  • Aquatic Therapy
  • Mirror-Box Therapy
  • Lymphatic drainage
  • Desensitization therapy
  • Endurance training
  • Functional training
  • Acupuncture
  • Medical Therapy
  • Opioids
  • Cortico-steroids
  • NSAIDs
  • OTC pain medications
  • Intravenous ketamine
  • Anti-convulsants
  • Nerve-blockers
  • Anti-depressants such as SSRIs and TCAs
  • Sodium-channel blockers
  • Calcium-channel blockers
  • Sleeping aids
  • Topical analgesics
  • Spinal cord stimulation
  • Psychological Therapyfriends
    Chronic, intense pain can have an adverse impact on a patient’s mood, and quality of life, as it can be emotionally burdensome to deal with the effects of the pain. Psychological therapy should therefore be included as a part of a patient’s treatment regimen as early as possible after diagnosis.
  • Talk therapy
  • Cognitive Behavioral Therapy (CBT)
  • Alternative Therapies
  • Meditation
  • Relaxation techniques

Is there a Cure?

There is no known cure for Complex Regional Pain Syndrome, but early diagnosis and a well-planned, multi-disciplinary treatment protocol can make a positive difference. In addition, having a strong support network can help. Staying connected to loved ones, joining a support group, and participating in talk therapy can help patients cope.



Lisa Hurley is a writer, Reiki practitioner, and certified sun-seeker. She is originally from Barbados, and now lives in Jersey City, New Jersey with her Jack Russell terrier King. She also happens to have an invisible illness (uveitis), and a chronic pain condition. She is passionate about helping other chronic pain warriors find the information they need to navigate their struggles, and feel stronger, more supported, and less alone.
Lisa’s educational background includes a Bachelor’s in French, Spanish & Linguistics from the University of the West Indies, a Master’s in Music Business from New York University, and a Mini-MBA™ in Social Media from Rutgers University.
If you’d like to connect with Lisa, you can find her on Instagram, Facebook, and LinkedIn.



Fair- Where you get cotton candy!

One of the biggest challenges we face as “Unchargeables” is pain. Whether it’s from disease or injury- pain is an unfortunate part of our daily lives.  We have our good days and we have our bad days but pain is still reality for us.

My pain comes from my Medullary Sponge Kidney, where I make daily kidney stones, have kidney/bladder spasms and frequent infections. I also have all over muscle pain due to the lack of cortisol from Addison’s disease. This pain is what I classify as senseless pain. There is no healing going on, no purpose in it. It is just pain. It has no function other than the result of something that is wrong.

Recently I have discovered there is another form of pain. This pain is not senseless. This pain is for a reason.

Since starting physical therapy, I feel like I have been hit by a bus. But for the first time in months, I’m moving my body and out of bed!   My pain has increased, but I feel like this pain has a purpose. I hurt but I am getting stronger, building my muscle mass back and will be able to walk again!  Every painful exercise, stretch and movement will be worth it in the end.

That being said, the senseless pain will still be there whether I can walk again or not. Some days will still be rough.

My mind continues the dance between hope and despair over this reality.

The only thing I can do is create purpose within the senseless pain.

Unfair is not a strong enough word to describe chronic illness. I can remember my students whining to me saying “But that’s not fair!”  To which I would look at them and reply, “Fair is where you get cotton candy, that is the only place fair exists in life.”

Daily pain is not fair.

Chronic Illness is not fair.

Life, my friends is not fair.

Purpose is not found, it is created.

So I am choosing to create a purpose within the senseless pain.

Out of suffering comes compassion,

out of compassion comes love

and love can change the world!

I want to live in the focus of love and not my pain.