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. ❤

Advertisements

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!

Uninvited

13697072_10153680859357694_391054945860903058_n.png

 

Less than. Left out. Lonely. Rejection wasn’t new, yet this time, it would be less painful to rip my heart right out of my chest. I poured out the emotions, “God they promised they wouldn’t leave me. How could they?”I had spent plenty of time wandering the playground alone or reading my Bible in silence at lunch. I figured shedding the shell of shyness was key to overcoming rejection, to leave behind those times I was uninvited.

Entering into college I felt like I was on top of the world socially. I had my youth group, the teens from the retreat I passionately poured into my high school years, and the girls on my floor. (Of course, finding a guy friend in order to get a ring by spring couldn’t hurt. Just Kidding! If you don’t get that joke go find a kid who goes to a Christian college.)

I was hopeful that even though I had chronic pain I would soon have solid answers to it and a treatment plan. Steroids don’t make life as a college girl easy. Emotions explode pretty much everywhere in a confused mess. Nothing was going as planned but it could only get better, or so I thought. Thanksgiving weekend I found out I had a triple (Yes I have three kidney’s) kidney infection that was severe lasting a total of four months.

young-woman-814823_960_720.jpg

I had always reached out to a particular group of friends checking in on everyone. I figured if no one heard from me someone would check to see if I was alive. I desperately wanted to just have a conversation about anything. Once someone reached out it wasn’t in a loving manner, leaving me in tears. From that conversation steamed rejection from a group of Christian friends. I felt unwanted, isolated, and brokenhearted.

It is a few years later as I sit on my bed writing this. My life is anything but typical.  God is on the move in my life providing me with a small group of friends who I cherish dearly and like a weirdo I do point it out to them that I am thankful they are in my life. The Lord is providing me with women to pour into through online Bible study, which I am forever grateful for. He has blessed me with the stability and faithfulness of my mom who has refused to walk out or give up. There are many days- even in those ‘safe’ places where I feel less than, left out, and lonely. Rejection is a knife leaving a deep scar regardless the colorful story attached.

Past rejections impact daily life more than we are aware of. Making us self-conscious. We throw up walls and harsh words out of fear. It seems at times we girls take things to heart a bit more.

guestbook-1165419_960_720.jpg

 

I would like to personally invite you to an online Bible study featuring Lysa TerKeurst new books Uninvited.

“In Uninvited, Lysa shares honestly from her own struggles with rejection and gives readers concrete truths to combat the lies our old Enemy hurls our way. You can stop feeling left out, because even when you are overlooked by others, you are handpicked by God. You can change your tendencies to either fall apart or control the actions of others by adopting healthy ways to process your hurt. You are designed for a love without limits, a love that will never let go.

13770307_10153676697477694_568340443702385857_n.png

With biblical depth, gut-honest vulnerability, and refreshing wit, Lysa helps readers:

  • Release the desire to fall apart or control the actions of others by embracing God-honoring ways to process their hurt.
  • Know exactly what to pray for the next ten days to steady their soul and restore their confidence.
  • Overcome the two core fears that feed our insecurities by understanding the secret of belonging.
  • Stop feeling left out and start believing that “set apart” does not mean “set aside.”
  • End the cycle of perceived rejection by refusing to turn a small incident into a full blown issue.”

This Women’s online study will dig deep into God’s word, build lasting friendships, pray with one another, in addition to reading and discussing the book.

Even when you’re overlooked by others, you are handpicked by God.
This post is part of Lysa TerKeurst’s Uninvited Book Blog Tour which I am delighted, excited, and honored to be a part of along with many other inspiring bloggers. Make sure to check out http://www.uninvitedbook.com.
uninvited-3d-768x768.png
To RSVP: Please e-mail: hopefulspoonie@gmail.com
I will be assisting in leading two studies with the book. The first is God-Living Girls. God-Living girls is for women God-Living Girls is for women with chronic illness and/or pain. The book will be completed alongside Proverbs 31 Ministries from September 6th- October 14th. I highly encourage all teen girls and women to check out God-Living Girls even if you aren’t interested in the study, the group has a lot of excellent resources.
The second group also meets  in a private Facebook Group, which you will be able to join starting August 15th. We will begin September 6nd as well, but we will be doing the study at a slower pace for about ten weeks. Feel free to ask questions!
Please share!

It’s a Spoonie World

Sometimes with being sick, I feel like I live in a different world. A world consumed with pills, doctors, and all things medical. The real world is a distant fairy tale. Attempting to budget time according to pain, fatigue, and symptoms. Even the simplest task must be carefully planned out. Planning is necessary but can be destroyed in an instant.

In this alternative universe, my health is the dictator. Rebelling would only make things more difficult. Taped and chained, the wall crumbled, oh the pain.

Occasionally, I try to sneak out to visit the real world, to be normal. These short visits never go as planned. Rebellious excitement floods my veins as I begin talking to someone. But Conversations quickly die when you are from another universe. The spoons are sucked out of my grip. It becomes easier to sit back and observe. Blending in is difficult. As time waltzes away, I realize how different those not citizens of the spoonie world function.

a9e4542b68fe7614105d0b00e1b480e6

The spoonie world isn’t all bad, it is filled with the most inspiring people you can encounter.Each stroy, is more beautiful and devastating than the last. Our problems are deeper than what most people are age deal with such as heartbreaks, parties, all-nighters, and peer pressure. We deal with the lastest hospitalization, biopsies, surgeries, and medical testing. Like normal college kids, we cry together and laugh together. We adjust to the Spoonie world challenges and beauty alike becoming stronger daily.

Grieving

Six years old is my first memory of chronic pain. Over the years there were different events that unfolded reveling more symptoms and contributing to my pain. Though I was in pain I lived a normal life.

15265_450377661778033_7845882770719929452_n

The road to a diagnosis seemed to have no end. Most doctors dismissed my complaints. I had shared with my regular MD that I would bleed when I brushed my teeth, my hands and feet were turning colors, and that I was experiencing joint pain. The doctor ginned at me telling me I was just weird. I continued to have similar encounters with doctors. Many believed I was too young to be in pain, I just had anxiety, I was pregnant, or was trying to get out of school. The frustration did eventually give me anxiety. Getting a doctor to take me seriously was difficult.

My illness kicked things up a notch during my high school years; five surgeries, endless testing, and a desperately search for name for the monster destroying my body. My junior year of high school, I saw an awful doctor who put me on medication that I was too young for. Along with some simple side effects I began to have seizures.

I never expected my medical answers to impact my life greatly. I figured I would get an answer, maybe take a medication, monitor things, and move on with my life. Despite pain and fatigue I was an active adolescent. Many days I was up before the crack of dawn. Like most teenagers I attended high school. In addition I babysat at least five days a week, attended youth group, volunteered at a few day care centers, and volunteered through my church. I adored being busy. My summers were jam packed with adventure with my youth group hiking, swimming, cannoning, summer camp, sleep overs, and mission trips. Fall was just as busy for me with retreats and volunteering.

I didn’t realize how much I would need to adjust or how much my life would change after I got the medical answers I desperately searched for. Summer vacation was like a blank canvass anticipating a stunning work of art. I had committed to going with my church to Kentucky on a mission trip. As things unfolded and Lupus came into the light it became clear that I wouldn’t be able to go. Thick guilt and deep regret filled my heart.

My pastor attempted to ‘include’ me one Sunday before everyone departed for the trip. I was utterly embarrassed, wanting to hide under a rock. After, I slipped away to the bathroom. Locking myself in the familiar stall I sobbed uncontrollably. That is the moment the truth about chronic illness whacked me in the face. I am not going to get better. I am chronically ill. It was a difficult concept for me to wrap my mind around.

I went through months of grieving off and on. I grieved all the things I could no longer do. I grieved the time my illness robed. I grieved the events I missed out on, like prom. That period of grieving was necessary in order for me to move forward.

Grieving can be a difficult part of being diagnosed. However, it is healthy and most times necessary. It is okay to grieve all that your illness has stolen. Be patient with yourself. You need time to learn the ropes of living with a chronic illness. Grieving is only a season in your life, learn from it, it will be over soon.

How do you handle grief from your illness?

Six Months

Today is my six month anniversary from being admitted to the hospital where I fought for my life. In addition, it has been six months since I have been in urgent care or the ER. This is the longest time I have stayed out of the ER or urgent care in seven or eight years. I never thought I would be able to say that I stayed out of urgent care for so long. Things have slowed down with my health. During my last major flare up typically I had a doctors appointment, medical testing, infusion, or an urgent care trip at least once a week. It was time consuming and draining.  I feel extremely blessed and grateful to be where I am now. I am also grateful for the medical professionals who cared for me, helped me, and continue to be on my case.

Hitting rock bottom with my health at the hospital was daunting. I can vividly recall, a chatter box doctor going over my medical history and medications several times. Then explaining I shouldn’t be in pain and implying that I should be in much worse condition (not that a 10 on the pain scale is in good condition). No one enjoys hitting rock bottom, but it was a blessing and a turning point. Though there are many negatives associated with steroids, they saved my life. Now they are helping me get stronger and hopeful begin to live again. (Yes, I am tapering.) I know I have said it before, but it is worth repeating, being admitted to the hospital was a blessing.

It is mind blowing for me to be able to say I have not stepped foot in urgent care in six months. I am beyond excited. Today, I am celebrating this victory. My mom and I are spending sometime together. She has been my caregiver and source of support and strength so I am blessed to be able to spend the day with her.

Five C’s of Coping with Stress

file0001584610234

Stress comes with chronic illness.  Get one chronic illness and receive more stress than you dream possible at no extra cost! Not the type of deal I was hoping to receive. We all know that stress is bad for us, especially for our illnesses though it is nearly impossible to avoid. Like pesky mosquito on a summer day.

dbf6cd5d71a54aa55173f0d6825e61d8

There is stress at work. Stress at school. Stress at the doctors, the pharmacy, with the insurance company, and stress from the endless testing. There is stress at home when the kids constantly bicker. Stress from the medications. Stress from the endless bills. Stress from the pain. There is no way to just avoid stress. Therefore we need to cope with it and this is not always an easy task.

The five Cs of Coping with Chronic illness Stress: a short guide.

Cry

I have always been an emotional girl. Look at me the wrong way and I’ll start to ball my eyes out. Crying is a wonderful and healthy way to cope with stress. Releasing the tears can help the body work through stress and regulate various levels in the brain. A good deep cry can assist in coping with stress.

7162224083889e9a9bcb6b296ca0b2d7

Cuddle

Who doesn’t love to cuddle?!? I mean seriously, what is more comforting then grabbing your furry friend and spending some quality cuddle time? Cuddles and hugs come with extra health benefits besides being awesome for stress like lowering blood pressure.

052

Coloring

Yes, color. Your favorite childhood pass time is not only acceptable in adulthood but it is recommended and healthy. “When coloring, we activate different areas of our two cerebral hemispheres, says psychologist Gloria Martínez Ayala. “The action involves both logic, by which we color forms, and creativity, when mixing and matching colors. This incorporates the areas of the cerebral cortex involved in vision and fine motor skills [coordination necessary to make small, precise movements]. The relaxation that it provides lowers the activity of the amygdala, a basic part of our brain involved in controlling emotion that is affected by stress (huffingtonpost).” The bottom line? Coloring is a creative way to combat stress.

01-11-23-280_640

Chatter

Call up a close friend and vent away. Letting it all out helps.

1352358041i76h9

Change

A change in scenery can make a difference. If you are able go for a walk, go over to a friends house, or to your favorite coffee shop.  Go some where different and engage in a different activity.

file000649791491

Share how you cope with stress.

POTS

I am an expert at passing out, it’s a skill that not many people have. Then again most people do not need this skill. I can recall the seconds leading up to each time I passed out vividly. I have passed out well over a dozen times.  I know when it is going to happen. The warning sings are always the same first I feel dizzy, then my hearing fades, weakness increases steadily, then the vision leaves, and boom I pass out. Once the passing out shuffle begins I spring into action. Either telling whoever is around or by getting to the floor as quickly as possible. Usually someone says my name a few times and I’m back. No biggie. Extremely tiring but not tragic.

images

October is Dysautonomia Awareness Month.  Postural Orthostatic Tachycardia Syndrome is a form of Dysautonomia. What in the world is it? “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.” Dysautonomia is not rare, at all, it is just rarely diagnosed. Many people live undiagnosed or misdiagnosed.

40942a455d8de64cd27e313a8e483e98

The tilt table test is used to diagnosis POTS. Web MD gives this explination of the test: “The test involves lying quietly on a bed and being tilted at different angles (30 to 60 degrees) for a period of time while various machines monitor your blood pressure, electrical impulses in your heart, and your oxygen level.

The head-up tilt table test usually takes one to two hours to complete. However, that may vary depending on the changes observed in your blood pressure and heart rate and the symptoms you experience during the test. Before the test begins, a nurse will help you get ready. The nurse will start an IV (intravenous) line. This is so the doctors and nurses may give you medications and fluids during the procedure if necessary.You will be awake during the test. You will be asked to lie quietly and keep your legs still.”

From my experience the tilt table test made me sick but did not increase my pain. Overall I found the test extremely boring. I was only up a few minutes before I began passing out. They laid me down and pumped me up with saline with extra sodium. The tilt table test does need to be done in the morning.

images

The most common types of Dysautonomia are: Postural Orthostatic Tachycardia Syndrome, Neurally Mediated Syncope, and Multiple System Atrophy.  POTS can develop in the adolescent years and some out grow it. In other cases it is a secondary illness and is a chronic condition. Some POTS patients are misdiagnosed with an anxiety disorder. POTS is not an anxiety disorder nor is it cause by one. The role anxiety plays is a symptom. I received my POTS diagnosis almost a year ago. The possibility of me having POTS was mentioned during my Reclast hospital vacation. I had heard of the syndrome, however my knowledge was extremely limited. Of course I researched POTS before my diagnosis was set in stone. Once I learned more about POTS I knew I had it. It was something I lived with, I just had to get the doctors as usual to see what I already knew. My doctor ran the tilt table test. My POTS presents many obstacles daily. It is an incontinence illness.

6e9901157be815021f5e277c065aa8c3

Though I like the doctor who is in charge of managing my POTS, most times he is unsure how to help. POTS can be challenging to treat. There is nothing my doctor can currently do other then prescribe a beta blocker for high heart rate. Of course, he advises the normal things such as eat sodium, wear compression stockings, pace yourself, ect…

It has almost been a year sense my official diagnosis. My POTS has improved greatly. This is mostly because of Prednisone. One of the biggest challenges I live with currently due to POTS is various organs not getting enough blood. Again, no one really knows how to help this issue in my body. My balance is off still. Right now it’s great I only fall into walls instead of completely collapsing. Collapsing out of no where is inconvenient and unsafe.

Normal activities are challenging for people with POTS. Being up right, being on their feet for a few minutes, and showering are difficult and sometimes dangerous things.

I watched something on POTS where a doctor recommended anyone with  POTS to wear a helmet in the shower. Comical. And impractical. How would you propose washing your hair with a helmet. Yes, falling in the shower is unsafe but a helmet is not the best solution.

10926201_10152746267923250_4851237649635120939_n

A lot more research needs to be done in order for patients to receive better treatments. That is one reason raising awareness for POTS and other chronic illnesses is essential. Thank you for reading about my POTS journey. I hope it can help someone or that someone can learn something from this post.

stop-pots

But You Don’t Look Sick

you-dont-looks-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.

10295989_10203823018282626_834213761712529425_o

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.

4b2c75696959ce6c99d6ace964fc4b71

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?

blogger-badge03

blogger-badge

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.

myfight2

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.