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.


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. https://chronicallyhopeful2014.wordpress.com/2015/05/02/hospitalization/

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.

Prednisone Part Three


The many side effects of prednisone complicates our already mixed up lives. Coping with them can present challenges. I am here to share a few simple tips of coping with prednisone side effects.

Humor is helps me cope with being chronically ill. Someone once said, “If you’re not laughing, you’re crying.” And as we all know laughter is the best medication. I have always had a unique sense of humor. You either understand my jokes and find me funny or you just think I’m weird- well either way you might think I’m weird. Prednisone is easy to make fun of, which is why countless do so in the online spoonie world. From pictures to songs prednisone humor is plentiful. I feel humor helps us find a sense of normalcy in the chaos of illness.

I love to talk. Some times I just talk even if there is nothing to talk about, endlessly blabbering. Talking is a great way to cope with the emotional monster chained up inside of you from prednisone. Family and friends provide support that cannot be put into words, so priceless and beautiful. In addition to their vital and irreplaceable support, I recommend finding a prednisone support group. I am a huge fan, overall of online support groups. Connecting with other spoonies gives you a different perspective, inspiration, and support in a unique way.



Are you on prednisone? Have you meet the emotional terror monsters evil twin… Cravings? If not you can receive your prednisone cravings and out of control hunger for free.

Hunger and cravings are another monster of prednisone. I don’t know about other people, but most times I do not get truly hungry, I just feel like eating or have cravings. Either way it is another obstacle for many. I face the obstacle of not having many things I can eat therefore I give into my cravings about 90% of the time. I do not recommend this what so ever, I know it’s not the best habit to be in. You already know that you need to eat healthy. It is more important now being on prednisone. The way your body is processing and absorbing food is different then your normal. For example you need to make sure to get enough calcium, potassium, and vitamin D. Lower the amount of sodium you eat. Find foods that are healthy and filling. Of course plenty of water is a must.

How do you cope with Prednisone?



My parents and I all have our Birthdays in January. What’s even more unique is my mom and I share a birthday, which is today January 28th. The first six years of my life I was an only child. I adore being a big sister, but I am grateful for the years I spent as an only child. I believe those years allowed me to develop a special bond with each of my parents. “You love your parents, but as you get to know them you fall in love with them.” I believe this quote is absolutely true. As a child, our parents are heros. As teenagers, we drift away from our parents. We are so consumed with our lives, we don’t take enough time to get to know our parents and cherish the small amount of time God lends them to us. I cherish the time I have with my parents.


My mom and I have always been close. She is the reason I am who I am today. I couldn’t ask for a better mother. God has truly blessed me. She has been with me for every appointment, ER trip, urgent care trip, every test, and every surgery. She’s the one who calms me down when Prednisone makes me crazy or when I’m just overwhelmed with everything. She is a huge encouragement and the source of strength. I am blessed that she introduced me to the Lord and raise me in a church. I am blessed that my mother encouraged and allowed me to go on missions trips and retreats. She always encourages me to lean on the Lord and to find strength in him.


I wish I could remember all the wonderful moments we shared together as I was growing up however my illnesses have impaired my memory. I cherish the few things I remember, the stories I am told of these moments, the home videos and countless pictures I have.


I know my illness is extremely difficult for my mother, which is heartbreaking for me. She is an admirable woman. I can only strive to be half as amazing, compassionate, and loving as she is. The strength she has always leaves me in awe. She has overcome and given so much in her life. I God every day that He blessed me with my mother. Thank you is not enough for everything she has done for me. HAPPY BIRTHDAY MOM!

Today, at 2:14 pm I turn 21 years old. I did not think I would see this day. There were many times I wondered if I would wake up in the morning or if the Lord would send his angles to carry me to his arms. I’m only 21, but I have fought for my life a number of times. There are a thousand reasons I should not be alive, but for whatever reason the Lord has allowed me to still be here. 

 Most people cannot wait for their 21st birthday, however I am not most people.As my birthday approached I began to dread it. Another year has passed, making me yet another year older. 21. I have never been a fan of getting older. For as long as I can remember I wanted to stay in toy land, to stay a child. For me growing up was something I dreaded and feared. Until recently I never understood why. Now I am beginning to understand this bazaar fear. The fear is rooted entangled with pain. I began have chronic pain around six years old. Continuously I have associated getting older with more chronic pain as well as my health becoming more complex.


Though I’m not thrilled to be 21, I am grateful to be alive and to have another year. Today is a day to celebrate everything I have overcome, being alive, and what I have accomplished. While I was 20 I began my Facebook page, this blog, survived my Reclast experience, achieved a 4.0 GPA, and other various small accomplishments. I look forward with hope to what will unfold during my time as a 21 year old. I hope to achieve at least a 3.8 GPA, get my kidney stones to stop, stabilize my health, grow my blog, become closer to God, and be able to go away to college in the fall.

 “For you formed my inward parts; you knitted me together in my mother’s womb.  I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.”

Jeremiah 29:11 “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Then you will call upon me and come and pray to me, and I will hear you. You will seek me and find me, when you seek me with all your heart.”

I hope you have a terrific day, thank you for stopping by! Sending lots of spoons, hugs, and prayers ❤

My Year Review

As 2014 graciously departs, we reflect on the ways it has transformed our lives.  We thank the year for the all the moments we encountered both those in which overflowed with joy and those drenched in hardships.  We have learned an abundance of lessons, encounter adventures, and have flourished in character. I invite you to join me as I reflect on my year.


Personally, 2014 was discreetly laced with ravishing moments of joy and catastrophe. My health consumed the majority of my time, outside of my academics. One is never truly prepared for a health combat and the after effects. My year began with medical luggage from the previous year. Which included a three month long kidney infection and stones, along with my usual chronic health challenges. Producing a Cytoscopy, I learned I have a fused supernumerary kidney as well as a double collecting system on my right side. (In nonmedical terms this means I have three kidneys and three Ureters.) With persistence the infection cleared up.

In March, my beloved cat Hope passed away. She lost her life to an autoimmune disorder along with internal bleeding. We developed a unique relationship. She helped care for me and provided me with love, support, and encouragement.


Prior to losing Hope, a stray cat wandered into my house where she had kittens. Assisting her emotionally during the forty eight hour birthing session was a unique experience. Kittens and new life in general provides joy as well as hope. Caring for the mother and kittens were excellent therapy for me. After much internal conflict, with the guidance of my parents, I decided to keep the orange kitten who was born second. He had gently wiggled his way into my heart, with no intentions of departing.


From the time I became ill, I have struggled to encounter the right doctor. I encountered many doctors who were disrespectful to me, who did not believe me, who diagnosed and undiagnosed me, and caused stress. These doctors caused the majority of my stress. By brushing my symptoms off, they allowed my body to attack me, thus allowed me to get worse. I was fairly hopeless when I met my current rheumatologist I knew if she was unwilling to help, I would not receive treatment for my Lupus. Just moments before the appointment I saw a Nephrologists. I was told I am mental, there is nothing wrong with me, and the doctor lied to me. That visit left me utterly numb. Praise the Lord my rheumatology appointment went better. A few months after being rediagnoised (for the 8th time) my doctor helped me begin the Benlysta infusion.


Due to complications, I was only able to take nine credits spring semester of 2014. I encountered struggles with the college I attend. Throughout my schooling career I have been told several times that I am not smart and have encountered various academic challenges. For this reason I was beyond shocked when I discovered I had earned a 3.5 GPA for the semester.

In September I was admitted to the hospital due to a life treating allergic reaction to the Osteoporosis medication known as Reclast. Positive and negative things were interweaved into my hospital stay.

The following week, my orange kitten, Tommy got fixed. My mom and I dropped him off, of course I promised to pick him up the following morning. When the phone rang that afternoon, I felt sick to my stomach. The Vet did not sound right as she requested to speak to my mother and didn’t chat with me as she normally would. I digested the fragments of the conversation. My beautiful, energetic kitten was gone. I began to scream and pace. Unable to calm down, unable to understand. My heart broke. We later found out that he has heart disease and a blood clot around his precious heart. Most likely a heart attack stole him.

Recovering from Reclast and keeping up with school work was a chore. Certain symptoms did not improve. I was recommend to cardiology, where we discovered I have POTS.

Though I was consumed with fear I got another kitten shortly after Tommy departed. The Vet and my support system agreed it would benefit my cat Grace and I. We adopted a beautiful curled ear kitten, Saide Rose who is nine months old.

I enjoyed my college courses and succeed beyond my imagination in them. I managed to pull a 4.0 GPA.

I encountered many moments of joy and catastrophe. I am stilling adjusting to life with POTS.  My support system drastically shifted and crumbed in ways. I cherish those who support me and I hold them dear to my heart. I cannot fold into words how grateful I am for the support I do receive. I have been blessed to begin Chronically Hopeful, which includes the Facebook page as well as this blog. I have learned to cherish every moment and to rely on God on a deeper level.  Through God, 2014 has blessed me in many ways.

I would love to hear about your year. Please share in the comments.

Sending New Year’s blessings, hugs, prayer, and spoons. ❤

Some of my Journey

Being chronically ill is demanding in many ways physically, emotionally, and spiritually. Countless emotions invade along with the pain. I never expected to grieve or to go through any of the other stages (denial, isolation, anger, crisis, depression, and renewal). I figured my life would go back to normal once I received the correct diagnosis and began a medication. Of course that is not what happened. Getting diagnosed was a difficult road, but it was not the hardest one. I thought I hit rock bottom with my health about two years ago. Unfortunately that low point was not rock bottom.

It has been a year and a half sense my official diagnosis of Systemic Lupus Erythematosus. Having an official diagnosis was a joyful thing for me and a relief. Shortly after I graduated high school then excitedly headed off to college three hours away from home. I had no doubts about the school I had chosen to attend. However, God had a different plan for my college journey. I battled pleurisy, which was a blessing because I began Prednisone. A few days after Thanksgiving, with only a little over a week left of the semester I had bloody urine. I later found out that it was caused by a kidney infection which lasted four months. The kidney infection was accompanied by stones for nine months. I thought I was beginning to stabilize. Then I had my infusion for Osteoporosis. Now I might have POTS, might need a biopsy, and my flare is anything but under control.

Most people enjoy thinking about their future. People my age dream about getting married, having children, their dream job, and traveling. Currently my future is so unclear. I cannot even think about a week from now, I never know how I am going to feel. Thinking about the future is scary at this point in time. Many questions cross my mind that I do not have answers to. Like how am I going to be able to take care of myself and live alone? How will I handle a major flare up on my own with a full time job?
With a chronic illness you realize how fragile life is. I have learned to cherish every moment I am with friends (which isn’t often), that I get to go to church, that I can walk, and I even cherish the times I am able to go food shopping. My memory has fade therefore pictures have taken on a new meaning to me. My perspective of life has changed drastically with being ill. With every struggle I see blessings. I am blessed in ways that I don’t always acknowledge.
This post is a bit all over the place. I guess I want my spoonie friends to know that you are not alone in the hardships of chronic illness. Over the past few months I have been very stable emotionally and doing well with taking things one moment at a time. However, today I feel overwhelmed. Coping is difficult. Living with a chronic illness is difficult, don’t let anyone else tell you otherwise. You will have great days emotionally and physically and you will have terrible days emotionally and physically. Bad days don’t mean you are weak, those days just mean you are human.

I pray that you would have comfort, peace, and strength for the days when the pain is too much to bare. For the days when your emotions run wild and you find yourself completely overwhelmed. I pray that your days would be pain free, beautiful, and over flowing with spoons. You are not alone. You have everything you need to get through another day. It will be okay.

Sending prayers, spoons, and hugs,


Reclast Experience



Written: September 20th, 2014

Many people know I was recently admitted to the hospital for five days. Initially I did not share much information about what had happened due to my lack of energy. I had a severe and rare reaction to a medication according to the doctors which also triggered a flare. Of course I am not a doctor and I’m not advising anyone to avoid or to take this medication. That is a personal decision between you and your doctor. No two medical cases are the same. I have chosen to share my experience to help educate others and to reassure other people that they are not alone.

A few weeks ago I received an IV treatment, Reclast for osteoporosis. Previously I had taken an oral medication for osteoporosis, but encountered bad dizzy spells along with balance issues. Later in the day I nearly fell down a flight of stairs. After discussing it with my doctor she recommend an IV treatment, which was extremely safe. I thought this was a good idea. My body usually works bests with IV medications. The doctor never told me the name of the medication. She seemed to be a trust worthy doctor. I got wrapped up in school work and life neglecting to call the office to get the name of the medication so I could research it.

Even though it seemed like the best option the day I received it I had a bad feeling about it. I expressed my concerns to my nurse who assured me the medication was extremely safe. It had been a long tiring day, so I figured my anxiety was trying to get the best of me. This was not the first medication I received through an IV. I expected to feel tired and a bit achy the following day. Nothing could have prepared me for what I encountered.

I woke up at five a.m. to use the bathroom, which is normal for me. However I did not feel right. I got back to my room as quickly as possible, were I proceed to pass out. I have passed out over half a dozen times. I thought I didn’t eat enough the day before or I was dehydrated. Once regaining consciousness I crawled back into my bed, ready to drift back to sleep. Sadly that was not the case.

I began having terrible chest pains. Attempting to roll onto my side I discovered it was agonizing to move. My entire body deeply ached, I felt pressure. It felt like I was waking up from a laparoscopy with an elephant sitting on top of me. Restlessly I laid as still as I could begging sleep to come. The hours dragged by. Finally I dragged my heavy body out of bed. I lost my vision and hearing upon standing. An intense migraine, accompanied by nausea weighed me down. I collapsed into my parent’s bed. Within a few minutes I got up and dragged my body to the bathroom. Once again my vision disappeared and hearing became muffled leaving me feeling weaker. I mustered up the little strength I had to drag my body the few feet to the bed. Whenever I sat up or stood my symptoms intensified. Finally I called for help which sucked the life out of my already weak body. My mom had me lay down to rest again, however nothing improved as the time passed. I felt worse. I couldn’t force food into my system or water. The nausea increased. My throat felt tight.

Unsure of what to do my mom placed a call to the rheumatologist office. Shortly after I spoke to the on call doctor. He was puzzled with everything I was encountering but was certain it was from the medication. He implied I should not have had the medication in this first place. He suggested I wait it out an hour, keeping hydrated then if I did not improve go to the ER or Urgent Care. I discussed it with my mom. I was unable to get liquids into my system, my symptoms were getting worse, and new ones emerged. Reluctantly I suggested we take another trip to urgent care. Urgent care closes early on the weekends. Though it was a drive from my house they know me, my extensive history, and have all my records. Sitting for that long was torcher and a challenge. All my focus and energy was used in trying to stay present, trying to avoid passing out again.

After a long wait in urgent cares waiting room I was brought back and seen by the doctor. Using what little strength remained I filled in the doctor about my medical complications, history, and new symptoms. I could hear the weakness in my own voice and once again felt the strength leaving my body. The doctor was straight forward explaining his concerns and his plan of action. For this first time I was told urgent care could not help me. Not only was I going to the hospital but I was being admitted as well. While we waited for the ambulance to come pick me up urgent care ran tests, gave me fluids, and medicated me. I felt doubtful I was actually being admitting. I thought they would ship me to the ER then send me home, however that was not the case.

It was a long night. Countless strange people woke me up every few minutes. Two o’clock in the morning I was rudely awaken by a male doctor. He greeted me asking, “Has anyone died suddenly in your family recently?” Of course I felt like he was implying that I was dying. The next thing he informed me of did not help. I was in the cardiac unit.

I will spare you the details of my five day stay. But I will share with you some of what they discovered. The Reclast directly affected my liver raiding my enzymes over 400. My blood pressure drops frequently while my heart rate sky rockets. I had pain worse than surgery pain in my abdomen. My overall pain increased. Though I can walk, I become unsteady too often without notice. I have fallen as well. I am waiting to find out if it has left any other permanent damage.