Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.


Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤


Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

But You Don’t Look Sick


“But you don’t look sick..” A saying that chronically ill people hear way too often. For those who have recently meet me I look like a normal 21 year old girl. But my family and church family are able to see the difference in me.


The girl who stares back at me when I look in the mirror is someone I do not recognize. That girl is not me. She has a rounded face, pale skin, thinning hair, and tired eyes. I am…or in reality was a girl with dark olive skin, bight and energetic eyes, thin, and tall with thick dark brown hair that most people mistake for black. I have changed drastically sense becoming ill. I am not the same girl physically or emotionally. Not all the alterations have been negative. It is difficult sometimes to be so different compared to who I was before I became ill. Medications have altered my body somewhat, but the majority of the physical changes are due to Lupus. At times looking through photos is difficult. I like who I have become. But the physical changes are hard to grasp. My body doesn’t feel like my own… it is like borrowing something that doesn’t fit right. Appearance doesn’t matter as much as it use to. It is more about feeling healthy and functioning; living again. I try to focus on this and the hallmark of what inwardly make me, Victoria. Some days it works amazingly. With no make up and hair up I feel like myself and I feel pretty.  Other days, are more difficult after layers of make up and many spoons wasted tears of frustration wash it away.

PicMonkey Collage         askme

“But you don’t look sick..” is never a comforting phrase. People might think it is a compliment, but it is not. It makes us feel like you do not believe how sick we are. Our outwards appearance, does not reflect the war going on inside of our body twenty four seven. Thankfully the destruction is not visible.


Those who are chronically ill learn all the make up, clothing, and hair tricks. She learns to fake a smile. To be a ray of sunshine. To pretend to be a healthy girl. Behind closed doors, everything is different. The make up comes off, the hair goes up, pj’s on, and the tears flow. With her head buried in her pillow she wonders how she made it through another day thankful no one saw though her mask. Insiting that she doesn’t look sick only adds to her struggle. Your words weigh more then you know.

Your world drastically changes in every way possible when you are chronically ill. It is like living on another planet in comparison to how thing were when you were healthy. Adjusting is difficult. You need to be patient with yourself. Allow yourself time to adjust to all the alterations your illness has imposed. Remember, that there is much more to you then the person looking at you in the mirror. Yes you might look different and that is okay, you are still beautiful. In addition to physical beauty, you have a stunning personality.

How do you cope with the changes your illness has caused?



My Invisible Fight

If you know me, you know I am chronically ill. My illness does not define who I am but it is a part of me. I look at as a trait not necessarily positive or negative. Like having brow hair, an oval face, or having dimples. My invisible fight. Words that empower. Words that inspire. Words that sum up my life over the past few years.

Without a doubt I have become a fighter, in this invisible fight. Few people know the details of my fight. Chronic illness is much more than what is seen on the surface. The battle is within. Falling apart only behind closed doors.


I had many encounters with terrible doctors. No one took me seriously (I still struggle with this today). Doctors downplayed any concerns. My mom was my advocate, my voice. Growing up I was dangerously shy. If someone were to look at me crossed I would shrink back into my shell. Hearing my middle name released a waterfall of tears. Speaking up, was terrifying for me. Gradually I began to find my voice and become my own advocate. I have educated myself on treatment options, my illnesses, and everything medical that is relevant. I have learned that I know my body and my illnesses better than any doctor. After all I am the one who lives with it every moment of every day.  I fought to find my voice. My mom and I fought to find good doctors.

My health began to spin out of control in high school. It became evident that something was really wrong. Little by little new symptoms would develop. A new rash, unbearable pain, sun sensitivity, collapsing, weight loss, hair loss, and that was only the beginning. Medical testing became the norm of my life. Blood work that included more than thirty tubes of blood, MRIs, x-rays, GI studies, CATSCANS, scopes, EKGs, EEGS, and other medical tests that I cannot recall the names to. In addition, I had five operations in high school. The operations ranged from removing my tonsils to removing cysts to explority surgery.I thought I had hit rock bottom my junior year of high school, after an encounter with a medication that caused seizures. Little did I know rock bottom was much further down. Little did I know that I would long to go back to those high school years and deal with that pain and those symptoms.

I felt like the pause button has been hit one too many times. I have been home bound many times over the past six or so years. Every time play was hit and I began to recover, get stronger, and move forward pause would be hit yet again. It seems like each time my life is put on pause gets longer and finding the play button becomes more difficult. 

My invisible fight was taken to a new level in college first due to pluricy. Then to finding bloody urine that indicated a sever double kidney infection lasting four months. I was taken off my Lupus medication which gave Lupus permission to recklessly attack. I began seeing doctors every few days, had medical testing weekly, and became a regular at urgent care. I landed myself in the cardic unit last September. I continued to get worse. More testing. More doctors. More pain. Hopeless.

My symptoms shifted. My abdomen began to give me issues again. This time it was worse. Abdominal swelling to the point of looking at least six months pregnant was my newest symptom.  I began to question how much more my body could take. How many more days of intense pain that sent me to bed screaming and doubling over. I was taped. Giving in to the fight was tempting. No one had answers. No one knew what to do.

Things were terrible. Eating was difficult and staying hydrated was nearly impossible. The fatigue was thick yet my body wouldn’t surrender to sleep. I had to rest going up or down the stairs. Breathing was a chore. Shower a hazard. Daily tasks seemed like huge projects. Some days I couldn’t bend down to put on my own socks.

Finally it happened. This past April, I hit rock bottom. I could barely move. The pain and fatigue were more intense than I can describe. I was admitted to the hospital for ten days.

Looking back I believe that being admitted was the best thing for my health overall. I was at rock bottom. It was more difficult to keep moving forward than I can describe.

When I received the message on Chronically Hopeful inviting me to help and participate in Invisible Illness Awareness week I was shocked and over joyed. I firmly believe that sharing our invisible fight stories is vital. Someone had shared the fight song. I immediately connected with it and shortly after fell in love with the lyrics. I feel like that is where I am in my invisible fight, taking back my life. Taking back life after dramatic pauses is difficult. At times it is painfully slow. Progress seems invisible.  Taking back my life and continuing to fight is a daily decision and struggle. I am mastering a new balance act with my invisible fight and the rest of my life.

My invisible fight has probably been the most difficult fight of my life. I know it will continue to be a tough fight. It has caused me physical pain, heartbreak, taken me on an emotional roller coaster, played tug a war with my faith, caused me to lose friends, and lose much more. Yes, there are countless negative attributions of my invisible fight, but I am sincerely and deeply grateful to be in this fight. First of all I am grateful because I believe that God will use my invisible fight for his glory. Through my invisible fight I have matured as a person and as a Christian. I have learned so much. I have meet some of the most inspiring people. I have had the honor of running Chronically Hopeful and helping with the Invisible Illness Awareness Campaign. My prayer is that my invisible fight will be a testomy, inspiration, and blessing to others.

Invisible Illness Awareness Week


There is more than meets the eye, don’t judge a book by its cover. Sayings we can spit out weightlessly in a moment notice. Our brains have memorized the words yet in many situations do not comprehend the depth of these words. Riding through the motions of life we jump to various conclusions based merely on what our eyes rely to us. We are quick to jump to conclusions and far too judgmental.


Invisible illness awareness week is essential. “But you don’t look sick” is one of the most over used phrases in the Spoonie world. Our outward appearance does not clearly display the war raging inside our bodies. Many individuals with chronic illnesses lose their friends, are treated poorly by family members, and receive rude comments from strangers. There is a lack of understanding and a lack of empathy. People make assumptions based on appearance and many times are unwilling to listen to what is really going on with an individual who is ill.

Untitled               But-You-dont-look-sick-


Invisible illness awareness week is a campaign founded by Lisa Copen over ten years ago. Lisa is the inspirational founder of Rest Ministries.  Invisible illness awareness week empowers those who live daily with a chronic illness.  Additionally it raises awareness for countless invisible illnesses. “96% of chronic illnesses are invisible.” This campaign strives to make the invisible…visible. While an individual might not see our illness that does not make it any less real. It is very real. A battle that must be fought without ceasing.


My heart is heavy with passion for the invisible fight. Raising awareness for chronic illness is vital to me. I believe that educating people about chronic illness is essential. Knowledge is power. Educating people who don’t have illnesses enhances their empathy for those who battle chronic illness daily.


The campaign and raising awareness in general impacts those who are chronically ill as well. It is empowering. It also encourages those who are chronically ill to keep fighting. Raising awareness reminds people that they are not alone, they are not the only one struggling with illness and the challenges it presents.

I feel obligated to share my story and assist others with chronic illness in any way possible. My hope is that others will be encouraged, learn, and find support through my openness. I am bursting with excitement for invisible illness awareness week. I hope you will join me in learning about invisible illnesses, celebrating those who have overcome obstacles their illness has presented, and sharing inspiring stories. Together we can put a stop to the assumptions of invisible illness. We can make invisible illness visible.


This year invisible illness awareness week is September 28th – October 4th. The theme is My Invisible Fight. I will be posting invisible illness awareness things here and on my facebook page Chronically Hopeful through out the month.

Join us on Facebook:

There are many effortless ways to get involved in invisible illness awareness week. Check out and like both the invisible illness week and chronically hopeful facebook pages. There will be a wealth of resources on each page daily. Uplifting pictures will be shared, beautiful stories, and articles. There will also be online conferences throughout the week.

blogger-badge blogger-badge03


March is Endometriosis awareness month.


“Endo what?” might be your first question. Endometriosis is not talked about much and like most chronic illnesses out there is commonly misunderstood. It is a discriminating illness that only effects woman of child baring age. Mayo Clinic describes Endo, “Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant). Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region. (However it can invade anywhere potentially occur anywhere.)

In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesion — abnormal tissue that binds organs together.” There are a total of five stages in Endo.


It’s an autoimmune disorder, according to the autoimmune foundation of America. Girls whos mothers or other female family members who have endometriosis are seven times more likely to develop Endo. It is not the most comfortable topic to discuss, however these are the facts that dictate many women’s lives. It is a fairly common illness.The symptoms have a wide range and can have a devastating impact.


Endometriosis is not just a painful period. It is difficult to diagnosis. Endo does not show up on CATSCANS, ultra sounds, or MRIs. The only way to know if one has endometriosis is surgery. There are limited treatment options available for women with endometriosis, the most popular one being birth control. On the other hand many girls have reactions to oral birth control this limits their treatment options even further. Some deal with the terrible symptoms, go into menopause, or try birth control injections.

Every female on my mothers side of my family has had endometriosis. I knew there was a chance I would have to deal with it, however it showed up years before expected. I had my fist ovarian cyst at nine years old, my period didn’t begin until four years later. Of course I encounter sever pain and other signs of Endo. About two years after my monthly began I discussed the option of doing exploratory surgery with an OBGY and my mom. I knew it was a long shot, I knew  could have symptoms and Endo not be present yet. But no one can be certain. Deciding to go through surgery is a gamble for any female who suspects having Endo.

I was anxious to say the least about my first surgery. They discovered a large cyst on my ovary which was leaking. All the scans had missed it (which is rare, but I’m different). If it had not been removed I could have lost a few organs including my bladder. They did not find endo but warned me I would need another laparoscopy down the road.


I continued having  problems and other health issues. I tired oral birth control and had a reaction every time. I continued to have terrible periods and abdominal issues. I had a Gastro evaluation. Eventually I ended up back at an OVGYN. I distinctly recall the phone call that pushed me back into the OR. I was trying to explain to my doctor that I could not take the birth control she had prescribed. She told me point blank that I had two options: go into menopause or have another laproscopy done. I felt trapped. Facing a decision no nineteen year old girl should have to. I agreed to the surgery.

I did not love my surgeon … okay I disliked her. On the way to the OR I had an anxiety attack. In the OR I saw the instruments they were going to use. So yeah, I freaked out… who wouldn’t. She told one of the nurses to get me to shut up, so compassionate….not.

They discovered I have stage one Endo. Due to my past relationships with birth control and my complex medical history they put me on an injection, depo provera. Depo Provera is a steroid which pauses the cycle.  I hate Depo, but it’s something I know I have to do. The injection is extremely painful because it is a thick medication. I have a lot of GI symptoms with it, including loss of appetite. Right now this is the best option for me. I hold on to hope. Hope for better treatment.

Please help us to raise awareness!!  Have you or someone you know encounter Endo? How have you coped?


March Update

*I just wanted to leave a quick note at the beginning of this post. I will be sharing some obstacles that I have encountered lately. I am not doing this for pity, attention, or anything along those lines. I attempt to be transparent with you so that you know that you are not alone. My hope is that my story can provide inspiration, comfort, and support as well as raise awareness for chronic illnesses. With that being said, I will jump right into this post, hope you enjoy.


I have been MIA from wordpress for a while. I have not had the spoons to write but I wanted to blog. There’s never a dull moment when living the spoonie life. For those of you who do not follow my Facebook page, Chronically hopeful, about two weeks ago I had a bazaar syncope episode. The day it started out unusual, but I brushed it off. Nearly out of spoons at only 11 am I reluctantly retreated to the living room to watch television. I struggle with really resting. It is difficult for me to remain in one position for a long period of time (and by a long period of time I mean more then 5 minutes). In between watching television I made lunch and took my medication

One minute I was seated once again in the living room, the next I’m on the floor a good ten feet from the chair with tears streaming down my face. Laying on the floor I realized that I had passed out. I had collapsed with zero warning signs. I have passed out at least a dozen times before (Like every other POSTIE patience). I can recall what unfolds before I black perfectly each episode. I can tell you till this day what happened the moments leading up to the first time I passed out at age nine. For me not remembering was a red flag. I have passed out so many times I often joke that I am an expert. Normally my vision begins to go then my hearing.

The weather was less then ideal which forced us to go to the nearest ER. I have an extensive negative history with this hospital. The majority of the people do not do there correctly. They never take me seriously. When I was in high school my school sent me there because they believed I was having a heart attack. I had a three hour wait to be checked in.

The hospital has switched management. I was hoping that it had improved however that was not the case. Again no one took me seriously. Only one person was considered who didn’t have the authority to assist me.

All of my doctors were informed about the episode and found it bazaar just as I did. The impact of my fall aggravated a few things. I have had an increase in migraines and have began experiencing numbness on the right side of my body. In addition I have had memory issues, trouble focusing, and extra fatigue. I have a few doctors appointments coming up. I am wearing a heart monitor once again just to rule out any additional heart problems and potentially to rule out POTS being the cause of that episode. (I will do a review on the monitor. It is a different one then the one I had in the fall.)


In a way my condition is stabilizing in the sense that I am not encountering additional symptoms daily. Though everyday is packed with various obstacles. It has been extremely difficult for me to stay on top of my school work. I am use to going ahead with my work, right now I’m barely keeping my head above water. Every assignment takes three times as long as I am use to. Occasionally I have difficulty comprehending what I have read. Needless to say this has been frustrating for me.

I try my best not to focus on the things I do not accomplish or the negatives, though I’ll admit there are many times I fail at this. For now I am taking everything one day at a time, one assignment at a time, one moment at a time. I know this is temporary. I also know being frustrated is normal. I have learned to that it is okay to feel anyway emotionally that I need to at any given moment. I just can not stay in a negative mind set or allow myself to act negatively because of my negative emotions.

If you have several chronic illnesses you know when one illness flares, every illness flares. My Lupus is throwing a fit because I am due for my Benlysta soon. My stomach is still misbehaving as well. Hopefully I can get everyone to calm down and behave soon… or maybe they can all go on vacation lol.


How have you been doing? Comment below and let me know, I love hearing from you. Please subscribe to get blog updates!  Later this month I will be doing several posts which I am excited about including: Endometriosis Awareness, Paw Prints on My Heart, and a College post.  Sending lots of spoons, prayers, and hugs ❤



It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.

You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope.  You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.

It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.

The World Doesn’t Pause

The world doesn’t pause when your chronically ill. This truth hits too hard, too soon. A chronic illness soon becomes yesterdays news. People don’t understand that chronic is just that, it is chronic. It doesn’t take a vacation (though that would be great). It is something that we deal with every second of every day of every week of every month of every year. Symptoms may vary, we might have good days, but it is something we need to always be mindful of. People get frustrated that you aren’t getting better. Frustrated that you cancel plans. Frustrated that you can’t do the things you use to do. Slowly one by one the friendships fade. They don’t want to deal with being friends with someone who is sick. The promises that they would always be by your side has been shred.

The world continues forward full speed ahead. It didn’t pause when I stepped into the OR, the doctors office, or went for testing. This fact is plain as day. Yet sometimes it hits me in the face like a two by four. And the tears stream out wildly. The realization sets in of the events that I missed. Those events that everyone makes a big deal out of and you obsessively ponder moment after moment. Sure the events themselves might not be so glamours but the thoughts of them and preparing for them are. Such as prom. The remainder of my examples fail to meet the expatiation of a typical American my age, like a mission trip to Africa (Or any where else for that matter), spending the day at the beach, or going on a retreat. Yes, I am aware there is no correlation between these events other then I feel like I missed out on them to some extent.

Losing friends is an aspect of being chronically ill. Life isn’t like a movie where everyone is super supportive, helpful, and understanding. I never expected that many of mine would desert me. It leaves me utterly heartbroken, but I do understand to an extent. They have their lives, they are moving forward and embarking on new adventures. I am geniuenly happy for them.

That though is not my reality. I am still fighting for my life. It can be discouraging and frustrating for me to watch via Facebook my friends or acquaintances living life doing the things my heart desperately longs to do. It has been especially difficult to see people I know out there serving on the missions field. God has blessed me with a heart for missions. However His calling was not what I had expected. He has called me to serve in microscopic ways currently from my room or the urgent care bed. To run a Facebook page a simply encourage people. I know in my heart I am where God called me to be, but it is difficult at times. There can be discomfort in every season of life which is why it is essential to wait on the Lord and remember this is only a season which will gently come to an end.


God has used my chronic illnesses as a tool to shape me into the person who he crafted me to be. Some people don’t like the fact that I have changed, but the truth is we all grow and change regularly. Many do not understand the daily struggles of chronic illness. A good day now looks nothing like a good day two years ago, though I hope my good days will improve.

Coping with the world racing forward, as we are stuck in this spoonie world is a challenge. Like all aspects of spoonie life, we adjust and we learn to thrive despite the set backs and pain. One thing that has helped me adjust to the spoonie world is connecting with other spoonies. There are many online resources such as Facebook pages, private Facebook groups, YouTube Channels, and blogs. Talking to other spoonies helped me find my new spoonie normal. For more tips on coping with chronic illness check out my blog post :

Share in the comments your experience with the world moving forward while you are stuck in the spoonie world.



February is a month focused on love and romance. I challenge you this February to focus on loving yourself, caring for yourself, and loving your story. You are a beautiful individual with so much to offer the world. You have many talents. The things you are passionate about add to your uniqueness. Your passions are there for a reason. You are chronically ill but there is so much more to who you are as a person. You are going to make a huge impact in this world.  Take time to understand why and how much the people in your life love you. Take time to take care of yourself, do things you enjoy, and rest. I hope that this month you can see how wonderful, precious, and valuable you truly are. 


Wishing you a month overflowing with beauty, blessings, and love. Take everything moment by moment, you have all you need to get through this moment. You are a strong, admirable, and beautiful individual. You are too amazing to put yourself down or speak negatively about yourself. Praying this month is pain free and that you have more then enough spoons. Sending warm hugs and prayers.


Comment below something you love about yourself.