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.

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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.

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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.

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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.

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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. ❤

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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,

Victoria

Reclast Experience

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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.

A Brief Introduction

Welcome to my blog, Chronically Hopeful. I am excited to finally be able to being this blog. My name is Victoria. Currently I am going for my bachelors in psychology, then I am planning on getting my masters. My ultimate goal is to go somewhere into ministry. I’m far from your typical college student, battling many chronic illnesses daily. It is difficult to know where to begin when sharing about my illnesses.

Over view of the road to diagnosis: I began experiencing chronic back pain in second grade though it was quickly dismissed. I missed half the school year in third grade due to viruses, the flu, and chronic stomach pain. The chronic pain made its way to various joints throughout the years. I faked being healthy for a while because I was sick of doctors not know what was wrong with me.

Entering high school, things got worse. Five operations in four years, countless medical testing, many frustrating doctor appointments, ER trips, and extreme pain. After much waiting, tears, and frustration I received my diagnosis of Systemic Lupus Erythematosus.

Lupus is my main illness. For those of you who do not know what Lupus is my short explanation of it is, your immune system attacks bacteria and viruses. My immune system is confused and overly active attacking my organs, tissue, and everything else in my body. There are many symptoms in addition to pain. It is a complex illness that leaves many doctors confused.

Other Illnesses: Lupus hardly ever invades on its own, there are many over lapping illnesses with Lupus. (Right now I’m just going to share the illnesses I personally battle). Asthma, Arthritis, Anemia, Migraines, Osteoporosis, and Kidney Stones are illnesses people have some knowledge of. Raynaud’s phenomenon is a blood circulation issue it makes hands and feet feel like ice. I change various pretty colors including purple, blue, gray, red, and green. Endometriosis is a female disorder in which tissue grows in incorrect places. I had many cysts because of it. Fused Supernumerary Kidney means I’ve got three kidneys, two of which are fused together. Double Collecting System means an extra Ureters mine are twisted around one another. I’m in the process of search for a few more medical answers.

This is a super vague and brief over view of my chronic illnesses. Of course my future posts will be more detailed and interesting. I just wanted to introduce myself. I am excited and honored to share my journey through chronic illnesses with you. Sending Spoons, Hugs, & prayers.