Bearing the Unbearable

Recently I had someone ask me, “What do you do in those moments where everything is unbearable?”

Ironically, that morning  I had been awake since 4:00am from agonizing pain. Nothing would affect it. No position was comfortable, no medicine was even touching it, nothing was taming the raging pain inside me.

Later that day I had physical therapy. I forced myself to go. I forced myself to push through the agony. I ended up breaking down in tears while lying on the floor doing exercises.

Sometimes this disease is too much.

Sometimes the pain is too high.

Sometimes I’m so sad I can’t hold  back the tears.

In these moments, all we can do is hold on.

Take a deep breath and remind yourself of why you’re still here.

Remind yourself of everyone you love and everyone that loves you.

Remind  yourself that “No man is an island.” You have to go on because you have  things to do. Things ONLY YOU can accomplish in this world. There is not another you. You are special and no one could EVER take your place.

As long as you have breath in those lungs, you have a purpose.

In those moments, we have to take this fight to another level.

It’s ALL OUT WAR. A war against pain, depression, grief, loss and change.

Remember two things-

1-You are not alone.

2- You can do this.

So my answer on bearing the unbearable is this….. Take those moments with the most gentle self care you can. Comfort yourself in healthy ways. Keep your mind away from the dark thoughts. Realize how strong you are.

I am attaching this song  because I feel like every chronic illness warrior can identify with it.  Listen to it. Blast it.  Fight with everything you are. You have work to do on this earth, you have people that love you, you have a purpose.



When invisible illness becomes visible.

Awareness about invisible illness is something that we here at the UnChargeables are incredibly passionate about. Those who suffer with diseases and conditions that cannot be seen are scrutinized by those who simply do not understand. Conditions like chronic migraine,  fibromyalgia, chiari malformation and diabetes-just to name a few,  cannot be seen by the human eye but effect the lives of so many chronic illness sufferers.

But what happens when your invisible illness suddenly takes on a visible form?

Which is worse; Looking well but being sick- therefore having people assume you are lazy and unmotivated  OR being sick and looking sick and having people stare at you in confusion; knowing something is wrong but not having the compassion to understand.

In either of these situations, people with chronic illness feel misunderstood.

My illness took on a physical form after my most recent relapse. My body now bears the exacerbations and side effects of long term steroid therapy.  My once clear, ivory skin now bears the unfortunate appearance of acne, my figure is now in double digits instead of the quaint size “8”  I  formerly was and my body bears the bright purple/red stretch marks and scars resulting from my surgery and the cortisol medication.

Every time I take a bath, I want to fight back tears. I want to scream and escape from the cage that my  body is. This cage is painful and unattractive. My once invisible illness has taken on a very visible form. I no longer can hide the fact that I am sick. No amount of exercise and make up can fix my body now. My diet is a strict as possible and I am in an intense physical therapy program for exercise and muscle strengthening. In chronic illness, there are just some things that cannot be controlled. I have to accept who I am now.

Self worth should never be dependent on looks. It is truly inner beauty that counts.

How someone treats another person is the TRUE reflection of who they are.

Anyone can have a pretty face, but not everyone can have a pretty spirit after going through darkness, pain and tragedy.

“True self control is controlling your thoughts, actions and feelings when nothing is the way you feel it should be.”

When I look at my body now, I have to realize that I did not choose this. I did not make bad decisions to cause any of the problems I have. Guilt is the worst thing a chronic illness sufferer can harbor in their spirit. It destroys us and is absolutely an unnecessary emotion.


We have enough to battle, let’s not battle our own spirit as well.

You did not choose your illness, but you do choose to bravely fight it every day.

Whether your illness is visible or invisible, I hope you accept yourself for the strong warrior that you are.

Self Care VS Selfishness

“You have to push through it.”

“Stay Positive!”

“It can’t be that bad!”

“Get some fresh air! That will help!”

“Have you tried exercising?”

How many times have we heard these things said to us when we are at our breaking point with our health?

Whether it’s from a family member, friend or even medical professionals….one thing is for sure, unless you are sick- you just don’t understand.

In those moments when our pain or disability overtakes us, we have to find a way to self care.

Those with health may not understand this concept. They may interpret it as selfishness.

How do we “UnChargeables” find the balance between self-care and selfishness?

Healthy people do not calculate things like we do. We literally ration everything in our lives in order to keep our health on track.  Every action is a “tax” on our strength and energy and must be planned.  Eating, sleeping, bathing, working- EVERY action in daily life requires a plan. 

Example- I have an appointment in the morning.  Is my hair washed? I better take a bath tonight because I won’t have the strength to do that and do physical therapy in the morning.

As sufferers of chronic illness, there are things we HAVE to do in order to survive.

We HAVE to eat right, we HAVE to sleep the amount of time our bodies require, we HAVE to rest when our energy gives out, we HAVE to take our medications, we HAVE to do our treatments,  we HAVE to eliminate stress, we HAVE To do what is best for our health.

Self care is doing the things you know to do in order to keep yourself as healthy as possible. Those who truly love you will see your habits as ESSENTIALS to your well being and will support you.

Those who do not understand and lack compassion may see your habits as selfish.

You cannot let this affect your actions towards your own health. 

I recently had someone make the comment to me, “It must be nice to not have to work.” Yes, I love giving up my dream of medical school and lying in bed all day. Thank you for pointing that out. I sure love feeling useless and lazy after running an entire retirement home and being in school for a second degree.

In my mind, people that judge us for our health needs are the selfish ones. When you judge someone who already walks a difficult road, that is SELFISH.

Self care is so vital to the health of a chronically ill person.

Eat what you need- When you need it.

Rest when you’re tired- Don’t fight it.

Ask for help- The people that love you will be there.

Ignore the negative influences- Some people are ignorant.

Be gentle with yourself- No rose blooms all year long.

Healing is a process.

Self care is NOT SELFISH!

If you are struggling in your health, please assess if you are taking care of yourself.

Here are some examples-

When you feel yourself becoming overwhelmed- take a deep breath and do something you enjoy like listening to a favorite song, watching a movie or remembering a place you love to visit.

Do something to pamper yourself! Drink some hot tea or wrap up in your favorite blanket.

Eat when you’re hungry, sleep when you’re tired. Sounds simple but for years I neglected to do these two things…..these are ESSENTIAL…….

Reach out to those who support you and avoid those who bring you down.

Not everyone will understand what you go through, your life and struggle will overwhelm some people. This is NOT your fault.

Best wishes of healing and hope my fellow UnChargeables!




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.

Backwards Pants and Physical Therapy

Yes, you read that right…..

Backwards pants.

Since my most recent relapse, I have developed an unfortunate amount of muscle atrophy. With the increased steroid dose and post surgery recovery, I have lost the ability to walk longer than 10 feet.

At 24 years old, I feel this is unacceptable. So this week I have started physical therapy!

I was very anxious going into my evaluation. My biggest fear was I would have some overbearing physical therapist that would not understand the dangers of adrenal insufficiency and I would end up in the hospital from being pushed too hard. I feared my body would crumble after being bedridden for six months. I feared another adrenal crisis.

The reality of my evaluation could not have been further from my fears. The physical therapist took an extensive history from me and assured me that we would proceed at my pace. She instructed me to let her know if I felt too stressed or too much pain. Upon reviewing my medication list, she informed me she had been placed on steroids for a few months and understood the struggles. She sympathized with me and expressed that she couldn’t imagine the fate of being on steroids for life. Her compassion was comforting.

My assessment astounded me with how much atrophy I have truly developed. I discovered my left side only has 30% range of motion and my leg muscles are only functioning at 3%. So it looks like I started physical therapy just in time.

The exercises she did with me were slightly painful, but I felt a sense of accomplishment to be moving again. I saw the true reality of my physical condition. I am weak now but I will get stronger.

She sent me home with an exercise regiment and I will see her twice a week for the next two months. I am very sore, but I  know that I am on the road to better function!

So where do the backward pants come in?

I got home, only to be told by my family that my black, stretchy yoga pants were on backwards and also inside out….drawstring and tag hanging out for all the world to see. I could not help but laugh. I am sure I made a great impression and appeared really intelligent with my backwards pants.

Lesson I learned today- I should not have been so anxious about physical therapy. I have the power to set limits and say no!

I also learned to check out what I am wearing BEFORE I leave the house.

Chronic illness warriors, we can’t be afraid to try new things for better health. If you know in your heart there is something you need to improve your life then GO FOR IT.

I was amazed at how one day of physical therapy gave me the hope that I will be able to walk again. There are tools and resources out there for people struggling with their health. I never thought I would have the need for physical therapy, but I am so glad it is an option.

If you feel out of control, let me just assure you that you have not exhausted every option. There is always hope, we just have to find it.

Here’s to better days of more function ahead!



What’s wrong with you?

Since joining  the UnChargeables team, I have had many questions asking about my condition… So here is a short boring little blog about what is wrong with me.

I have had endometriosis since age 12, caused by estrogen dominance. I really believe this is the origin of all my health issues from the massive hormone imbalance. Endometriosis causes ovarian cysts, pelvic masses, endometriomas, irregular menses, mood swings/changes, acne, weight changes and migraines.


At age 15, I started getting chronic kidney stones, which I later discovered was from a congenital disorder called Medullary Sponge Kidney.  This disorder causes renal cysts, kidney stones and infection. It is extremely painful, every day… I was not diagnosed until 3 months ago but I am SO thankful to finally have answers!


The stress on my body caused me to have adrenal failure, also known as Addison’s disease. My endocrine system was so stressed out that it just stopped working. I make the joke that my adrenal gland’s name is Elvis, and it certainly left the building……   (Hardy har har….puny attempt at humor)

When your endocrine system doesn’t work, it causes a lot of problems. I also have major electrolyte imbalances, zero energy, POTS and some other fun things…

I have had many surgeries. I have had two endometrial excisions to remove pelvic masses, gall bladder removal and an appendectomy.

I will be on steroid medication for life.

I almost lost my life on my 23rd birthday due to an adrenal crisis, which was mistaken for an allergic reaction. But I survived!!

I am writing this not to whine, but to let others know that I do understand what it means to suffer and have to overcome obstacles.

I have had points in my life where I was running an entire retirement home, seeing clients and learning medical school information.

I have also had points where my mother had to help me shower and I could not clothe or feed myself.

The Chronic illness life is one of trial and error, mountains and valleys and revivals and relapses.

It is the life I was given, I will take it day by day.

I am here to help others rebuild their health, as I am constantly sustaining my own.

Below are the links to my published books, I am only sharing them in hopes they will encourage someone. Please don’t think I am here to sell anything,  these projects are simply what kept my sane during my time of being completely bedridden. I wanted to share what helped me with others. Writing became my escape.

The Shivering Sunbeam- Children’s Book Explaining Disability to Young Minds

Arsenal of Arrows- Mind/Spiritual Guidance

My fellow chronic illness warriors, please feel free to reach out if you ever need a listening ear.

My email is

Wishing you all health, hope and healing!

Red Light, Green Light, Game On!


As a former early childhood educator, I grew very familiar with the game “Red light, green light.” I can remember the children in my class excitedly running throughout the gymnasium with the sounds of their little tennis shoes squeaking against the floor. The concept of the game is to run as far as you can during the command of “Green light” and to stop suddenly whenever the leader of the game calls out “Red light.”   I feel like this is a similar concept with chronic illness. We do as much as we can while we have a “Green light” in our health and come to a screeching halt when our bodies send out a “Red light.”

A “Green light” in chronic illness is different for everyone. For some, it’s a day of manageable pain, for others it’s a day of energy and strength.  In my own life, a green light for me is whenever my kidney stones are minimal and I have energy. We all know that pain wears us out. Coupled with the adrenal failure, the pain absolutely drains my energy. I rarely have days where I can stay awake a full twelve hours, but when I do… I feel like super woman!  Yesterday was a “Green light” for me. For Christmas, my odd little family (which consists of my parents, brother and two best friends) decided to go sit on the beach to celebrate the holiday. Afterwards, I made homemade chicken and dumplings and we all watched movies.  My pain was at a manageable level and I was truly able to enjoy my day.

Unfortunately today is a “Red light” day. Kidney stones and pain kept me up until 4:30am and my adrenals ache from the strain on them. Today my body is demanding a stop signal. But you know what, I am so very thankful I was able to enjoy yesterday! I think the key to surviving the bad days is holding onto the memories of the good ones. My ocean Christmas was wonderful. My chicken and dumplings were enjoyed by the people that I love. I chose to hold onto the good things. I will get through today. The pain may be high but I will see another “Green light” again.

Chronic illness forces us to understand human limits far more than the average healthy person. The constant dance of pushing ourselves and letting ourselves rest is an art AND a science. We have to find the balance of knowing our limits but conquering our weaknesses at the same time.

Let me just encourage you to believe in your own intuition. Only you know your magic ratio! Never let anyone push you past your limits, including yourself. You do not have to be a super hero. The mistake I often make is feeling like I have to prove myself even more because I am ill. This is not the case.

We, as chronic illness warriors fight battles that would make the average healthy person crumble. I often see social media statuses where people have meltdowns over the silliest things and I just think “Wow THAT is your tragedy?”   I am not saying play “Experience Olympics” where we compare everything we go through to other people’s normal lives.  But I am saying that you should pride yourself on how strong you are to battle your illness every single day. Celebrate your green light days! On your red light days, remind yourself of your accomplishments and do as much self-care as possible.

GREEN LIGHT! Let’s go. RED LIGHT! Let’s rest.

Either way, chronic illness, GAME ON!

I am out of control

I am out of control.

I think the hardest part about chronic illness is realizing that control is a total illusion. I often wonder what my six year old self would think if she knew what she would become. Would she look forward to the future? Would she think I handled the battles well? That little girl is all grown up, in a reality she never would have dreamed of. She grew up and developed a rare, auto immune endocrine disorder, Addison’s disease.

As children, we are asked questions like, “What are you going to be when you grow up?” I was always the confident kid who had an answer to everything. “Yes! I’ll be a doctor because I want to help people.” Little me said time and time again. I earnestly believed I could choose my future, and with that belief that adulthood meant control. I thought being an adult meant I could determine my entire life.

Everyone of us who suffers with illness has a dream of “What I could be…if.”

I now see how flawed my childhood ideals were. Yes, chronic illness you have taken my control. I cannot change what happened today, last week or last year. But I can control how I look towards tomorrow.

I will still have Addison’s disease tomorrow but I refuse to let it cripple me. When I wake, I will choose to revel in the beauty of a new beginning. I will allow the sting of my tender spirit to remind me I am still alive. I will use my pain to inspire and help others heal their own. I will learn from the error of my ways. I will smile. I will let myself hurt. I will let myself heal. I will take care of my body. I will let my salty tears remind me of the ocean and not the pain.

Chronic Illness, you took my control but you will not take my character.

Manatees, Steriods and Self Esteem.

I weigh how much? BUT I JUST EAT LETTUCE.

I make the joke that I am a manatee.

I do actually fit the criteria to be such a creature.

I live in Florida, I eat healthy and all natural food and I’m still overweight…therefore I am a manatee.

Before being treated for Addison’s disease, I was very close to death and very underweight. At 23 years old, 5 foot 4 inches, I only weighed 87 pounds. My frail little body had succumb to the lack of cortisol, electrolytes and aldosterone.

 Fast forward one year, after adding the necessary exogenous cortisol medications, my weight went up.

It happened just about overnight….

I literally woke up one morning and everything in my closet was tight. I had to wear a skirt to work because nothing fit.


The steroid effect… hit me….hard.

 I went to my doctor that week and expressed my concerns regarding my weight. He asked me about my diet and activity level. I explained to him I was on strict gluten, dairy, egg free, low sugar and all natural diet. He looked at me, smiled and told me that the steroids were the reason I was overweight and not anything I was doing. I had been on steroids a year now, and they will put weight on you regardless of how strictly you eat. He also credited me for how I had only gained as much weight as I had. I was still disheartened at my weight and inquired about anything I could do. He reminded me that I was in recovery for total adrenal failure and exercise wouldn’t be a quick fix for me and I needed to just do the best I could. So there I was, stuck with this fat. I took the doctor’s words to heart to just do my best and left the appointment accepting my weight.


 I was working in the field of geriatrics when my weight gain issue started. Old people will tell you in a mili-second every flaw that you have. Everything my doctor said was bombarded by snide comments from elderly ladies.

There was a lady in the community that was a Cuban immigrant who spoke broken English. She came up to me and in her lovely accent told me, “Win-so, you were so BONITA, now you so big. You need to stop eat.”

Later that day another resident scolded me for getting pregnant out of wedlock.

My self-esteem plummeted. I was ugly now. I was fat. I was gross.

 Some people seek comfort foods and over eat when they self loathe. I did the opposite. Food became a source of irritation for me. I did not want any of it. I ate, but not as much as I was supposed to.

I didn’t lose weight, I just weakened myself even worse and ended up in the hospital.

 I let what those mean old ladies said get to me.

I ignored what my good doctor said.

Why do we hold negative comments so much closer to our hearts than the positive ones?

 I was lying in the hospital bed, hooked up to an IV, heart rate and BP going crazy. Who was next to me? None of those old ladies.

 Tears welled up in my eyes as I laid on that gurney. My pain was high and my spirit was low. I had to realize what was important. People will say mean things, no matter what you weigh, how you look, how smart you are or how much class or money you have. Negative people seek to destroy others. Positive people seek to build up others.

 I knew I was holding onto the comments from the wrong people.

I closed my eyes and thought about every positive thing that had been said to me that week.

 The hospital staff not only treated my physical problems that night, but also my spirit. My nurse told me it was okay for me to slow down and jokingly said I needed to be like a turtle. The patient care tech told me he respected me for all I went through. He also told me to live my life to the fullest despite my illness. After being discharged, he pushed me in the wheelchair and told me how he was 40 and wished he had lived a better life. “It goes fast, kid. Just be sure you are enjoying as much as possible.” His words could not have fallen before a more appropriate audience. I began to think about how many hours I had worked that week, how much schoolwork I had forced myself through. I thought about how I cried every time I had to get up in the morning from pain and walk into work like I was fine. I really had put myself last. I was not enjoying life. I was in survival mode. I stepped into the car from the wheelchair and thanked the patient care tech for his advice. I determined from that day forward to never let negative comments destroy me again.

 When I did go back to work, the comments did not stop. The pregnancy rumor had spread even further. I, being a sensitive person, had a really hard time not taking the judgmental looks and mean comments to heart. One of my favorite residents came into my office as I was fighting back tears one morning. “Oh you’re not listening to these old bitties are you?” She asked me.

Trying to hide my hurt, I responded “No, but I do hear what they say.”

In the most serious manner, she pushed her walker over to my desk and said “You listen to me, next time someone asks you if you are pregnant you tell them yes. You also tell them you are having triplets and ask if they want to adopt. Tell ’em you’ll charge a thousand bucks a baby and you’re taking donations too!”

I erupted in laughter. I held onto her funny advice and to this day still laugh about it.

That day helped me learn to stop obsessing over the negative comments and truly hang onto the good ones.

“Reviving from the Relapse”

Relapse, the title for an event those of us with chronic illnesses dread. An event where we are doing everything in our power to keep ourselves healthy and yet still the sickness takes over. Life doesn’t stop for us.  We are still supposed to take care of our responsibilities and function normally even though we are hardly functioning.

Reviving from a relapse will only happen with time, self-care and patience. Here are a few tips to get started on the road to recovery.

1- Learn to say NO!  You have a chronic illness! You already work twice as hard as the average person just to accomplish the same tasks. It is OKAY to say no. You already do so much!  You don’t have to prove yourself to anyone. You already battle enough. Don’t add to your already mounting exhaustion.

 2- Have some “me” time; whether it’s reading a book, playing the piano, taking a walk, or just closing your eyes for a few minutes. You are worth it.

 3- Ask for help. Stubbornness and pride will only hinder your progress. People who love you are there to help. There is no shame in asking for a helping hand!

4- Keep doing the things you know are good for you such as: Sleeping enough, eating right, taking medications correctly and staying hydrated.

Remember, you are worth it.

 5- Don’t let yourself feel guilty for things you cannot do.

 6- Don’t feel sorry for yourself. You have a chronic illness. You are not weak because you battle every day, you are made strong from your hardships.

7- Surround yourself with support. Negative people who lack compassion will only add stress into your life. You deserve support and love, not judgement and ableism.

You are not a burden, you have a burden. Give yourself the care you need.


  • Winslow E. Dixon