Finding Power When Your Disease Makes You Feel Powerless

Sitting here in gut-wrenching pain, fighting for every prescription and ounce of help, it’s a wonder I have any sense of power or control left in my life. Slowly losing the ability to take care of yourself, eat, drink, or use the bathroom, can really make a person feel powerless. I’m alive not on my own steam, but because of medical innovation. Catheters keep my bladder empty. Central lines and artificial nutrition through my veins keeps me nourished and hydrated. Assistance from others keeps me clean and taken care of. Wheelchairs and walking aids get me out of the house and further than a distance of a couple hundred yards. I’m not looking for sympathy and I am as sure as hell as not ungrateful for my resources, but how do I keep a can-do attitude when there is so much I can’t do that I once could? How do I encourage others in similar, or worse positions than myself? How do I find power in such a powerless situation? Power to keep going. Power to get stronger. Power to get out of bed every day and smile. Power to fight.  Quite often I am confronted by others asking me how I do it, or they simply state most people wouldn’t be as positive and up-beat if they had gone through all that I have had to. But the truth is, you really never know how strong you are until you have to be, and I had to be. You see body builders and athletes working out at the gym all the time building up their physical strength. Maybe its for a competition or an athletic event and they’re a part of a team. Maybe its just to stay healthy. There’s infinite ways to build up out physical strength but what about our mental strength? Life prepares us for that. God guides us down the path we are on for a reason and would never give us something we couldn’t handle. Cliché I know but thus far I’ve handled it and that was not on my own. Knowing that and knowing this disease can’t take away my mentality gives me power. Every thought I have gives me power because I am in control of it. Losing the functions that I have lost is power the disease has. Every moment, every situation that I allow to suck because I’m reminded of my disease, which let’s be honest happens constantly, I lose power and it gains power. So how do I take that away? How do I break the cycle and steal some power back? By changing the situation. I’m going to be blunt. No twenty-three-year-old female, or anyone for that matter, wants help showering and being that exposed is humiliating. This can be a truly powerless feeling. Thankfully I have a great aide and care team who encourages me to do as much as I can on my own, but that’s beside the point. To take over a situation like that, I crack a joke. One thing to remember- humor is always powerful and goes a long way. I do whatever I can to make the moment better. Whatever you can do to make the moment better will give you more power. I remind myself what I can do. Maybe I cannot eat or drink, maybe I have to carry a backpack full of medical supplies anytime I go out and meticulously plan that trip out, but I can still set small goals everyday for myself to accomplish. Think of any time when you achieved something. I bet you felt pretty powerful in that moment. Big or small, it doesn’t matter, as long as its attainable. So I challenge myself to reach out to a friend that I haven’t talked to in a while. Chronic illness can cause isolation and doing this helps take away that power from illness and give it back to me and my social life. Finding your own areas of power-saving is key. A major power-saver for me is seeing the good in every moment of every day and focusing on what I can do versus what I cannot do. I cannot work currently, but I can work on my writing- which I love. I can put on a favorite movie or read a new book. I can play a game with my family that surrounds me. For everything I cannot do, there are a thousand things I can do. That helps keep power over my feelings in every moment. This disease wants to take away the good from me, (come on, who DOESN’T love food?!), but there’s other good in the moment to focus on. For one, I save a LOT of money on groceries (see, there’s that humor again), and it’s a beautiful day out. The sun is shining and I’m sitting out on the deck enjoying it as I am writing this. I may not have power over the weather, but my disease doesn’t either, and I have the power to choose to enjoy the weather when I can. As I write this I have an amazing, supportive, loving family who has seen me through this. That’s something this disease can never take away. Also untouchable is my medical team all in home, in town, and out of town. I have the power of resources to fight this disease that it could never have. That alone is good that is in every moment. I have the power to choose to smile. The power to choose to laugh. The power to not be just my disease, but a human, a sister, a daughter, a cousin, and a friend as well. I have the power to close my eyes and relive the memories of when I could run and participate in sports. I also have the power to dream and believe that one day I will be able to complete my bucket list item of running across America, coast to coast, New York to California. There may be a moment at a cookout surrounded by all my old favorite foods that gets to me, but I have the power of knowing its still a good moment as I’m making memories with loved ones while they’re still here to make memories with. At the end of the day it won’t matter what I did or didn’t eat but the memories made will, and that’s a power my disease will never have. I have not been perfect all these years, but every day I’m making small changes and mindful choices to gain back more and more power.

 

cf8

The Healing Powers of Good Nurses

The Healing Powers of Good Nurses
Courtney Nicoline James
9/01/2017 8:38pm

                I have wanted to write this piece for a while now but as always procrastination got the best of me. This time however, I’m glad it did. It’s been a constant in and out of hospitals these last two years with plenty of healing and some unfortunate reverse healing. When it’s a constant whirl of grey walls and IV pump beeps it is a struggle to keep your spirits up and stay positive. You hear horror stories of abuse and negligence associated with all hospitals, both big and small, more so now than ever. Social media advancements shed light on these happenings but rarely highlight the extra step nurses usually take to guarantee maximum strength. I think society has forgotten the comfort and care nurses excel at. Are all nurses perfect 100% of the time? No. Are you? No. Nurses have an extremely hard job and work long shifts without breaks, food, drinks, checking in on their own families, or using the bathroom even. This is not meant to demean or negate the harder experiences some may have had, but I am blessed enough to say that I have always had wonderful nursing and zero complaints. Some better than others, but I like to believe I caught them on an off night, and that says a lot with my infinite office visits, tests, ER trips, and hospital stays throughout several different hospitals from New York to Maryland, small towns to big cities. To stand out amongst all the good, you must excel, and these following nurses did just that and more.
During one of my longest hospital stays, I met a truly remarkable nurse. I was on her unit for a week before being transferred to a different unit, to my dismay. I have trouble with change in the medical world. Once I am comfortable with a floor and know the unit I do not like to change. “Unbelievable!” were her first words to me when she got the call that out of all her patients, I was the one bed management had chosen to transfer. She had a gentle touch and a sweet laugh. She knew how to minimize pain without heavy narcotics or babying you. Most importantly, she took her time with patients and everything was “oh it’s no problem!” making you feel as if you are the only patient on the entire floor. She truly was one of the most hands-on nurses I have ever had during my week stay. Her strength was advocating for patients. I had come up from having an NG tube placed and she took one look and me and one look at the tube and immediately new something was wrong and that this was not going to work for nutrition and immediately got on the phone with the doctors. Threw my tears and vomiting episodes she helped me stay clean and calm, assuring me everything was being done to have it removed. She kept on top of everything and never forgot one small thing and followed up without you even having to ask. On more than one occasion we had got talking and she spoke of her family and life in another country and the hardships of life and her strength shown. She talked of her family and of yours and got to know you as a person, not a patient. She laughed with me and at one point cried with me. She truly cared and part of my anxiety makes me constantly worry that I am burdening someone or asking too much to which she always quickly shut down. I looked forward to her shifts knowing she would bring comfort and peace of mind which truly helps in the healing process.
One of my most recent hospital stays proved that sometimes laughter is the best medicine. It was an outpatient surgery and I only had her that one day I was there, yet she made a huge impact anyways. Due to the short nature of time she didn’t really know who I was or most of my health history, but she comforted patients with laughter and distraction. For anyone who has ever had surgery, you know how painful waking up can be. With this nurse, tears quickly turned into laughter and before I knew it she was done with what she had come in to do and the worst part was over without having known it even started. Any nurse that can completely distract you from the first few hours of post op pain deserves a gold star.
I have had nurses laugh when they get intestinal juice on them from working with my j-tube instead of being disgusted and making a big deal out of it which would have in turn made me feel bad. I have had nurses make it their goal to convince me to go into nursing as they believe in me and the impact I could make when I doubt myself. I have had nurses take unwanted news and turn the perspective around or convince me I do not need to worry. If I do need to worry, they worry with me. There was a time I stayed on a floor very restrictive to visitors outside of certain hours and phones turned off during various hours. I had to have an EKG done which came back abnormal and was rushed for an echocardiogram and then anxiously wait for a cardiac specialist to come consult. When the news came back good, she seemed happier than I was, high fived, the phone for me to call my parents to relieve their worries as well. Other workers on the floor did not agree with my special privilege to use the phone however she wasn’t hearing anything of it. I even had a nurse who did not know me from Adam in the recovery unit after surgery track down my doctor who was off duty and have him immediately change my status from NPO so I could have dinner as I had not eaten in over 24 hours due to this procedure and he wanted to ensure that I did not have to wait until the following morning when patient meals opened again. He found himself with only 12 minutes to do all of this and ended with one minute to spare. I never saw him again after I was taken out of recovery and back to my unit.
The impact nurses have on the healing process is remarkable and cannot be duplicated. Please remember they are human too. Always thank a nurse, they are key to your care!

Dedicated to
Fely – Johns Hopkins Hospital Osler 5
Ashlee- Crouse Hospital RRC
To every nurse at every office visit, hospital stay, test, procedure, or phone conversation
Thank you for Your Care

I AM READY TO BE FREE – Overcoming Depression

I’m tired of not being able to breathe from my inner attacker suffocating me.
Fighting for each breath there’s only one way I will allow this to end.
I let you win for the past year and a half, but all this time is what I needed to realize the claim you don’t                have over me.
How dare you try to overpower me.
Free of your restraints I am strong enough with the anger inside of me to push you off – control over me you no longer have.
Defeated and broken down your weight caused me to collapse, hopeless that I would ever get back up.
You convinced me to believe I was hopeless by creating dark thoughts and you sent them running wild.
That was a clever tactic but it won’t work anymore.
Unleashed your thoughts latched on to every cell in my body poisoning them.
Some thoughts stunned me with fear that I could never be well again.
Other thoughts convinced me to never love myself again.
Overrun and too intimidated now to fight back they whispered this was my new life now- this is who I was now.
Other thoughts got creative and painted an ugly duckling over the mirror for me to see staring back as if it was my own reflection.
Instead of seeing me you convinced me of my imperfections.
Hair was meant to be straight.
Skin was meant to be clear and tan.
Thighs were not meant to touch.
Disease was something you deserved.
I eventually realized these aren’t imperfections, you taught me wrong.
While I was waging civil war on myself you went in deeper.
The thoughts you released continued to be destructive as they paced way past my heart and into my soul.
Here they convinced me I was unlovable- unfit for marriage as they promised me I’d only be a burden and should I have kids they would hate me as a mother.
I felt stabbed by a double edge sword as my very dreams were ripped out of me.
You invaded me. I believed you when you preached my worthlessness.
What an evil strategy to remind me that I shouldn’t have these thoughts with all my blessings, but it was you who created these thoughts.
Stricken with guilt I made the worst mistake by believing that it isn’t worth anything anymore when you sang to me the song of death every night before I drifted off to sleep.
Why tempt me knowing it was release to freedom that I desired.
You so kindly offered me the tools that I required.
Despite all that I knew you still played me like a fool and showed me your version of the path to the freedom that I sought.
I intended to follow your lead.
Then it hit me and I remembered someone else that wasn’t in my head told me there is always another option, and you only gave me one.
I don’t like that.
So I tossed you aside like a damn tornado in search of another one.
I cleansed myself of you even though the pain was a sudden rush.
I started to think for myself, I was determined to find a different option to liberation.
I promise these were not my own thoughts.
You once were a part of me but never were me- something I have to always remember.
Now this is me telling you freedom doesn’t meal all things have to end.
Freedom is believing in yourself.
Freedom is breathing lightly without the weight of your own world bearing down on you.
Freedom is cleansing yourself of everything that isn’t you.
Now that I have pushed you off I am free to gain my own strength now that I am no longer entrapped by the thoughts you put inside my head.
After this last year and a half I am done losing.
I have broken out of my chains.
Untethered now I stake my own claim.
I am free.
I am no longer defeated.
I am no longer broken down.
It was easier letting you control me than fighting you each and every day but now I am ready to be free.

Without a Compass- Navigating Life after Illness Changes You

I’m lost in a space that isn’t my own, it belongs to a former version of myself. A girl with an internal compass who could tell you north or south…east or west after being spun around in a field now does not know which way is up or which was is down. I danced in that field with my hair down becoming one with the wind. Chocolatey brown curls spiraled out of control as the sun beat down and grey clouds skirted away. My soul is out there still, I think, but I don’t know which way to turn to get back to it. I’m without a compass to guide me back. I close my eyes and make believe that I am back. Barefoot and engraved into my own roots of the earth. I face a stark reality when I finally do open my eyes again. Seconds turn into minutes and minutes turn to hours. A seamless vicious cycle of time turns hours into days and before I know it, months have gone by. Boundless moments blended into one as I continued searching for my dancing soul in a lost and forgotten field. I begin to wonder “does this field even exist?” Searching deep within me I can’t help but wonder if these memories were but a coping mechanism to brighten my days. Impossible I thought as I can still feel the warm sun rays beaming down on my face as I looked up smiling in content. I’d give anything to go back. How do I get back? Where is back? How do I get things back to the way they were before? I run, it’s a desperate attempt to chase after any glimmer of light left. It’s far enough to just be able to touch when I reach out pleading and just close enough for my dreamy eyes to see it without being able to reach it. Or is this just me imagining again? With all of these changes within me I lost my way. Without a compass, I’m stuck again. No map, no directions, no address, no trail. I begin to start wondering maybe I am without a compass for a reason. Maybe it really is impossible to get to a place that exists only in the past. Maybe I changed with these changes. I must not be meant to go back. Then it dawns on me. I’m lost in a space that is meant for my former self to keep. Destiny changes our paths. This is who I am now. She can dance in a field but I am now meant to be somewhere else. Amidst the chaos, turmoil, and joy that make up these days, I must make a new way for myself suitable for who I am now. Alas I have a compass pointing me towards my new future.

The “I’m Fine” Feeling

There’s a difference between being tired and having fatigue. There’s a difference between intermittent pain and the daily pain that comes with disease and flares. What I say or show does not always reflect how I feel. There is a difference between “feeling fine and functioning” versus “feeling fine and actually living.” I understand that by saying “I’m fine” doesn’t give anyone any indication that I’m not fine, but it gives me something to say without having to constantly complain or lie and say I’m doing well. It’s the same concept when any woman says she’s fine. We all know that means she most definitely is NOT fine. For myself and others alike, feeling fine is an actual feeling just as much as feeling happy or sad, good or bad. All “feeling fine” means is that the threshold for how I typically feel has not moved, despite it being higher than what you would naturally expect of someone functioning as well as I am. Having an illness, or any trial in life, does not define who you are as a person and it most certainly does not stop your life. So pain or no pain, symptoms or no symptoms, flare or no flare I have to continue pushing forward in life. Refusing to let chronic illnesses dampen my dreams and aspirations results in resilience and character, determination and strength, and the ability to push through the pain and fatigue, nausea and vomiting, anxiety and tears. Ultimately, you learn to function at this new threshold. This threshold, however, unpredictably changes every day adding to the challenge of functioning normally. Therefore, it is hard for someone with an illness that has flares to plan too far ahead and why we “constantly cancel.” We never know how we are going to feel when we wake up. Every morning is a surprise. Feeling “fine” is the pain and daily symptoms I deal with and side effects I suffer from that I have learned to live with and adapt to daily to function as much as possible. If I cancel, complain, or sacrifice some pride and ask for help you know the flare is considerably bad. This is true for everyone suffering alike- no one’s is better or worse than the other, it’s just something you simply have to learn to understand. While this is often challenging at times, I cannot overuse this excuse or cancel too often, putting life on hold. I cannot let it control my life or define who I am. Rheumatoid Arthritis is something I have, not what I am. I have SMAS but I am not a Superior Mesenteric Artery. I am an aspiring writer. I am a volunteer. I am a student. I am a daughter, a sister, a niece and a cousin. I am fearless, and most days I am also fine. I have come to realize that there is another side to this life. Suffering from rare and chronic diseases and constantly being in the hospital or at doctor’s appointments is not the only side. The other side holds my future, my career, my wedding and children. It is essential to always remind myself of this side and try to believe in it and strive to live in it. There is more to my life than my illness and I have more to offer than co-pays. Feeling fine is what allows me to live on this other side where it can truly be full of light and hope rather than just giving in and crawling back in bed like I would like to do. While it is not always as easy as it seems and some days pushing through falls victim to needing an important rest and recovery day, some better or worse, it is also not impossible. Feeling fine is what makes it possible. Feeling fine means hold these pills, I have a future to chase after.

cf6

Fearless –

A war like no other.

Sitting in a cold, hostile room feeling numb and unsure of where to settle your eyes on or what to say next, you anxiously ponder what this means for the rest of your life and wonder how to go on. Words that slipped so easily off the tongue of the man that stares back at you struggle to make sense in your mind. Just a few minutes prior, you were laughing at a meme someone tagged you in and now you have suddenly forgot that laughter even exists. This is a serious moment, one where even the brightest of lights won’t lighten up the mood or ease the tension in the air.

“It won’t happen to me.”  “That’ll never happen.” “Those things only happen to those that bring it upon themselves.” Sound familiar? More than likely you have heard one of these at some point in your life and probably even found yourself saying something similar. No one plans to get sick. No one plans to have their entire life altered unexpectedly. No one thinks that when they woke up with a swollen finger around the age of one, that it was the beginning of a life long journey unlike most. A journey that shows the world just how big your brave is and what having strength truly means. A journey that has taught you how to be fearless from all the fiery hoops you had to jump through despite others doubt. Undeniably it is hard to imagine that finding your one year old with a swollen finger would make a parent think that it is the beginning of a lifelong, systemic battle, but sometimes that’s just what it is. Sometimes it isn’t just a swollen finger. Sometimes it’s Juvenile Rheumatoid Arthritis and sometimes, Juvenile Rheumatoid Arthritis is battle one of the war. Throughout life, complications arise and these earlier battles help prepare you for the battles yet to come. You can never be fully prepared for the diagnosis of yet another disease, especially one as rare as Superior Mesenteric Artery Syndrome because you don’t expect it to happen. You don’t fight your war expecting another battle, you fight your war believing that this is the last battle, so why would I go through life anticipating future diagnoses? While you can never be fully prepared going into each battle, you can bring in what each previous battle has taught you.

I learned what strength really is and what it meant to be strong. Strength is not being able to lift the heaviest or run the fastest. Strength is continuing when you think it is impossible to. Strength is knowing your limits and respecting those boundaries your body has, for good reason. Strength is also questioning these limits and knowing how and when to push them. Strength is not only accepting someone’s offers, but asking for help as well. Your pride will still be there when you are in a better position physically and able to return the favor by helping them when they need it. Strength is taking a deep breath in, letting it out, and owning that breath that you deserve to take. Strength is using each breath to its maximum potential. Strength is loving yourself so you can love others. Strength is loving yourself so others can love you. Through all this strength, you get to the point that you are accepting of this new way of life. I became fearless. There is no other word to describe the aftermath. Fearless is how you fight a war like no other. Fearless is what keeps you fighting. Fearless is allowing yourself to be empowered by your inner strength. Strength allows you to fight those battles but being fearless wins the war.

Why I Believe Being Diagnosed Young was Lucky

Receiving a diagnosis is one of the hardest things in life a person and family can go through. You never believe it will happen to you. No one ever wakes up feeling off, maybe a little achy or stiff, and think that this is a feeling they will grow accustomed to as it continues to worsen. You can never fully grasp the concept of what such an event feels like until it happens to you. To the mother who woke up stiff and achy, it would only make sense for her to believe these feelings were due to the stress of chasing three young children around and staying ahead of chores the night prior. To the athlete that trains hard every day but woke up one morning to a swollen joint, logically he would believe he somehow injured it the night prior or perhaps pushed himself too hard. To the teacher who is instilling knowledge into our future generations, or the musician who’s fingers dance across the ivory keys. To the grandmother who is passing along her secrets to her grandchildren, or to the person simply trying to enjoy life and its greatest adventures. It can happen to anyone.

Although the general population believes I am “too young” to have Rheumatoid Arthritis, I do, and I have for 20 years now. There is a popular stigma centered around the notion of arthritis that correlates to our elder’s pain and arthritis from years of wear and tear. Unfortunately, autoimmune diseases don’t follow a timeline or adhere to such stigmas. As much as I would love to tell my arthritis that I’m too young and to come back when I’m 70, I must deal with it in the here and now. Rheumatoid Arthritis is an autoimmune disease; your own body is attacking itself. Osteoarthritis is what you have when you get older and have cartilage breakdown due to years of wear and tear as mentioned above, hence why it is most common in our elders.

When you grow up with a chronic illness, it develops with you and you grow together. There is no sudden hold put on life. There is no emotional or physical battle trying to understand why you feel the way you do and how to fix it. There is no what-if thinking. What if I had gone to the gym more? What if I swam instead of ran? What if I didn’t do this or that, what if I had done this or that? When it’s a diagnosis you received shortly after birth, you don’t remember any of the trials and tribulations that lead up to the diagnosis. You didn’t have to spend hours a day researching the disease, side effects and symptoms, treatments and remedies, searching for the most innovative options out there. Receiving a systemic, autoimmune disease diagnosis is scary and undoubtedly you go through a grieving stage of pre-diagnosis life and feelings of loneliness. Then comes that first year or so of figuring out what your new normal is and what your flares feel like, when to call the doctor and when to wait it out at home in agony. Not only is it a huge adjustment for the afflicted person, but for everyone around them as well. Think of it this way- suddenly you are taken out of your home, without anyone, and thrown into another country that speaks a different language and has their own sets of beliefs, traditions, and cultures. Eventually you learn to navigate and fit in, learn the essential part of the language and the general concepts of their culture, but you never regain that feeling of belonging. Slowly your loved ones are brought in but they must learn at their own pace and are just as clueless as you were originally. They are behind you despite their best efforts and yours to educate them because they cannot fully understand what Rheumatoid Arthritis really is without having it themselves. This is the general experience of a family receiving this new diagnosis. My early diagnosis allowed me to skip all these steps of acceptance and adjustment. Although my family had to go through some of this, they too could learn as I grew and help adapt as life continued moving forward.

Imagine that you were lucky enough to receive your diagnosis prior to an age you can’t remember any different. Yes, I did just use the word lucky. You’re probably wondering how anyone can consider a chronic illness “lucky.” Rather than being taken out of the world I knew and thrown into a world opposite to everything I once relied on, I simply had to adapt as I came across each situation. I didn’t have to figure it out all at once. Growing up with (Juvenile) Rheumatoid Arthritis was like someone growing up left handed in a world dominated by right handers; simply adapting as they come across something created as if you were right handed. Some learn to use their right hand during these situations, and others adapt whatever they are using into something compatible for left handers. With regards to understanding the difference in age of diagnosis in accordance to how it affects the rest of your life, it is as simple as this analogy.

Being diagnosed that young is not all glitz and glamor. Of course, I would have rather not developed this in the first place. Dealing with this as a child, even if it is all you have ever known, still does have some negative effects. Years of pain and struggle, medications and side effects, progression and damage take a toll on not only the physical body, but the emotional and mental wellbeing of the body. One autoimmune disease leads to the next. One medication and associated side effects lead to the next medication. It becomes a domino effect and the longer this protocol is followed, the more havoc reaped on your body. I do not know of anyone that doesn’t suffer with a mental illness and struggle with their emotions, typically anxiety and depression, after years of built up emotions from battling RA.

When asked if I had to be diagnosed with RA at some point in my life, would I choose an early diagnosis or a late one. In these simple terms I of course would go with the early diagnosis. The sooner you are diagnosed the sooner you can move on with the rest of your life and your family’s life. I understand that the older I am, the less of my life I must deal with disease and doctors, hospitals and medications. As much as I love the idea of having the first better half of my life without any disease, the older you get and the more accustomed you are with your life and daily habits. It is a lot easier to adapt physically and mentally the younger you are. With a little love and strength, new and improved medications, I was still able to lead a mostly normal childhood and was very active in music and sports throughout the years. Every now and then there were set backs, but everyone has set backs in life whether it is medically related or not. I feel as though this is a “small price” to pay to avoid the effects later in life. Unfortunately, we do not get to choose in life, or I would never have chosen this in the first place. However, we must deal with whatever life throws at us- at least I got the better end of the deal and am thankful for all  love and support I had growing up and continue to receive.
cf3

Visibly Invisible

In our current society, we get caught up in the hustle and bustle of life, never stopping to appreciate that beauty that is around us. We are in such a hurry to get from point A to point B that we become blind to what is right in front of us. Something that is completely visible suddenly becomes invisible and often forgotten about.  What would happen if we stopped to enjoy nature? What would happen if we started to see what was right in front of us? It may seem like an absurd concept to believe everything happens for a reason and that each of us do things the way we do for a reason. We never know what the person next to us is going through, yet we assume the worst in those around us as to why they didn’t do something they should have. No one is immune to this so let’s think about this for a minute.

If a tree falls in the forest and no one is around to hear it, does it make a sound? What if a hiker finds the tree on the ground, do they think it’s lazy for being there? No. They assume an external force caused the tree to fall. What if a sudden storm blew in, or someone purposefully cut the tree down with a chainsaw?  To the tree, these are unexpected acts of force from an outside source causing it to fall. It’s not the trees fault. Although the tree wants to stand tall to fulfill its earthly duty of being a tree, it now has no choice but to lay on the ground. The tree will remain on the ground indefinitely as it slowly accepts the harshness of the forest elements breaking it down and invading it. The tree will not stand or thrive until someone comes along and stands it up, fitting it with supports so that it can stand once it is left alone. Ever since the tree was initially knocked down it cannot stand on its own again. The tree will need full support standing indefinitely. Even if someone comes around and stands the tree back up and secures it up with full supports, another unexpected storm or chainsaw could come around knocking the tree back to the ground. When the hiker comes along, they only see the aftermath. They don’t see how many times the tree has fallen, the support it needs to stand, or the trauma endured that caused it to fall. This is all invisible to the hiker; they simply see a tree laying on the forest floor.

Now, let’s pretend that the hiker represents society as a whole. The tree represents each individual, unique person. The storm and chainsaw represent the onset of a chronic disease and their associated flares. The supports keeping the tree up represent only necessary and crucial medications and therapies. Lying on the ground decaying as nature runs its course and insects/animals pick away at it highlight disease progression when chronic illness is not being properly managed or subdued- just as nature/disease runs its toll on the body without the necessary and therapies needed for sustainability. If a hiker can walk through a forest, see a tree on the ground, and conclude that something caused it to fall, then why can’t society in general accept that if a person doesn’t look sick, they automatically believe that person is fine- just lazy. What if the hiker could hit play on a screen each time they came across a fallen tree to see how it fell so that the outside force that brought the tree down wasn’t invisible? What if a person with an invisible illness’ internal symptoms and disease activity suddenly wasn’t invisible? What if I walked around in day to day life with my IV line from infusions and hydrations left in? What if I had needles taped to my abdomen where I receive weekly injections? Instead of a face, what if I had the skull and hazard sign for toxins and hazardous materials, chemo agents, and chemicals that I’m forced to ingest daily? Instead of breaking down, dissolving, and digesting the copious amount of medications, what if they sat on my tongue attached as if they were glued so you and I both were constantly seeing them and being reminded. Now, the medications necessary are no longer invisible. What if my body lit up like a heat map? Only instead of it being a heat map, it was a pain and symptom map. As the pain and symptoms of each area of my body bettered or worsened, that area would change from blue/green to red, red being the most intense. What if my pain went from invisible to visible so you would understand that I’m not lazy or seeking drugs- I’m just trying to improve the quality of my days? What if all my doctors followed me around everywhere I went like a posse or body guards. What if my catheter was on the outside of my body and clothes, visible to all? What if a scalpel hung around my neck like a necklace- ready to go into battle the moment another cyst and infection appeared, or if I needed more lymph nodes removed? What if my scars had dates on them from when I got them? What if a battery bar hovered over my head with the percentage of battery (energy) that I currently had left? Imagine this- my battery level is low, and my charger (sleeping) was broken or not as efficient so I couldn’t fully charge up again This is how it feels when pain and disease symptoms alter your ability to sleep. Rest isn’t always exactly that and can sometimes lead to more pain and stiffness if not done properly. Imagine that. Imagine having to practice how you sleep and use trial and error to find the right supportive positioning pillows and how often to set your alarm to wake back up to move in the middle of the night in hopes you can walk in the morning a little quicker? What if I had my lab values as tattoos? What if my digestive system was Bluetooth enabled and you could see the pain, nausea, and digestive problems as my body accepted the liquid nutrition that I live off. Instead of constantly scrolling through my phone, I instead sat there updating medical lists such as providers and medications, and going through the stack of medical bills trying to figure out how to pay them all. What if my emotions were on my face and my heart was on my sleeve? What if every tear I’ve ever shed was collected in a bucket and carried with me? Would you still compare this to your grandmother’s arthritis? Would you still think I was lazy when I called off work or took an extra nap? Would you still be bold and come up to me with confidence and criticize me for taking these medications and push your cure of natural supplements and exercise? Would you still feel good about berating me for parking in a handicap spot? Why do we go off our own perception of something we’ve never experienced rather than what we hear and see from someone who has? I will tell you this now; open your eyes and begin to see with them. Open your ears and begin to hear with them. Open your heart and begin to feel with it. Don’t feel emotions from your brain when your heart is the center of your body; the portal for emotions from your soul and the outside world. Why is the difference between visibility and invisibility the difference in treatment, acceptance, and support? Having had this my entire life and never knowing a life without it I do not understand the other side of things. I do know one thing. You wouldn’t tell me that I’m too young, exaggerating, and that I don’t look sick so it can’t be that bad. If the invisible suddenly became visible would you still look at me and think I was lazy, or strong for going on and enduring anyways?

c4

Challenge #1: Change Your Daily Outlook for Seven Days

When we wake up, when we work through our day, and when we go to bed we are constantly dealing with stressors and chaos on some level. At the end of the day, it typically is not the good things about the day that we think of like having a hot meal, a warm home with warm water and plumbing, electricity/technology, a bed to crash on at the end of our long and busy days, etc. The first thoughts that come forward as we drift to sleep are the negatives of the day like possibly being late, or that joke you made that no one laughed at, (I have experienced this more times than I care to admit), or the food you dropped on your favorite shirt and left a stain. We worry about everything that has to get done the next day. Here it is, still the night before, and we are already stressing over a day that has yet to come, and lets face it- technically is unpredictable. Think of all the times your day didn’t go as expected. So why worry until the moment we have to tactile whatever it is that is causing stress the night before, and probably disrupting your sleep. Here is the perfect opportunity to throw in a favorite cliché- take everything one step at a time. Now I know this is easier said than done, so I want to officially challenge you. It’s a fairly easy challenge, here’s what you have to do:

For the next seven days-

  • Wake up each morning and tell someone that it’s going to be a good day. Text them, snapchat them, post on facebook, tell them face to face, or send them a tweet. Just tell someone, and make the effort to believe it yourself.
  • Right before you go to bed, tell someone, (it can be someone different and it does not have to be the same method as used earlier- the point is just to tell someone), “I had a good day.”
  • While laying in bed waiting to drift off to sleep, rather than thinking over how the day went or something that happened 8 years ago, or something that is about to come up, try to go through your entire day in your head and pick out everything that was good. This would include having a fork to eat your eggs with, putting on clothes and shoes before going wherever it is you are going, having a car to get there, someone willing to give you a ride, or the money to be able to take a taxi or bus if you don’t have a car- every little positive thing throughout the day.

If you truly try this and don’t just go through the motions, try to believe all of the good you are seeing, saying, and thinking and throw away any negative thoughts that try to come creeping in. The more you do this, the easier it will get even in those tougher situations. Watch how even after a week your outlook on life begins to change.