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. ❤

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Introduction to Psalm 5

It is simply an honor that you have dropped by! My prayer is that you will be a little encouraged or learn something here. This is a simple introduction to Psalm chapter five. Furthermore, look out for the next Psalm five post coming soon!

“The various psalms reflect nearly every human emotion: unbridled joy, deep-seated jealousy, seething anger, hope, and depression. These are only a few of the emotions behind the poetry we hear expressed in individual psalms. Feelings and emotions are central to what it means to be human. We cannot escape them nor should we. Psalms invite us to take the emotions we feel and bring them before God. This book model how to come before God in times of sadness, brokenness, and joy. Psalm 5 is a cry for help and a plea for guidance by a person who suffered at the hands of an enemy. It talks about the morning as the time to pray and listen for God to answer. Like many laments, it begins with a cry but ends in confidence.” Biblegateway.com

Psalm Chapter five is an emotionally rich chapter, yet consists of only a few verses. Another sorrowful Psalm crafted by David as he fled from Saul. His mature faith shines throughout the chapter as he not only pours out his heart to God but also praises Him. This Psalm is parallel to 1 Samuel 18-20, which I highly encourage you to read as well to gain a deeper understanding.

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 Clearly, this is a prayer, furthermore a brief overview of how our prayer life should look. Prayer is a complexly beautiful gift extended to us. “Words are not the essence but the garments of prayer.” In addition, prayer is longings beyond words, worship, and listening with a still heart to God’s voice. “Moses at the Red Sea cried to God, though he said nothing. Yet the use of language may prevent distraction of mind, may assist the powers of the soul, and may excite devotion.”

“Utterance is of no avail without heart, but that fervent longing and silent desires are accepted, even when unexpressed.” Humans make prayer into something formal with rules that Christ never intended. Perfection is not an element of prayer, yet it is accomplished in the Fathers eyes when we are seiner. I love how Rachel Wajo puts it, “you have permission to ache freely.” Christ desires for us to pour out our hearts. For us to share with Him every detail of every element of our lives and to share every emotion. He desires your heart even though it is not in perfect condition, even if you feel it is shattered and stained by sin.

It can be tempting to pretend that we have it all together and are just a step away from perfection. Aiming for the perfect body, perfect career, perfect family, and perfect relationship with Christ. Society has us in the mind frame that we can achieve perfection. The media whispers that everyone but you has it all together. We don’t want to be a burden to those around us so in a way we isolate ourselves in pretending it is all fine.

Lord,

We proclaim how great you are and tell of the wonderful things you have done. You are our strong defender. Our source of life. You have blessed us beyond understanding. All honor, glory, and praise be to Your name now and forever.

We praise You for the holy gift of Your word. Enable us to cherish it and engrave it on our hearts. Let us see clearly so that we may take in the amazing things coming from Your Word. Open the eyes of our hearts. We are eagure to receive Your Word. Bless us with understanding. Help us to apply Your Word to our life today.

Amen

 

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!

Encouragement for You

 

Blessings are all around you though at times they might be hard to see. The fact that you woke up this beautiful morning is a blessing. You are a fighter with a sparkling and breathtaking personality. If you are able to walk on your own that is truly a blessing, but if you cannot and you have a walking device that is a blessing as well. Your senses are a blessing as well as all the amazing things your body accomplishes without you taking notice. Those that you hold dear to your heart are blessings so is every moment that you spend with them.

Not only have you received a great abundance of blessings but you have blessed other without even knowing it. You have been a blessing by welcoming a new person to your group of friends or your church. You have been a blessing by reaching out to a friend who was lonely. You were a blessing simply by being present and listening while someone was having a difficult time. Your life story and the story of how you have battled you illness has inspired many. It has given people hope, strength, courage, and peace. Many more people will be inspired by your story and blessed by your compassion. You have impacted more people than you are aware of, you matter to countless people more than you know.
Reflect on all the priceless blessings in your life and encourage someone in your life.

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

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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.

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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.

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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.

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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.

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Chatter

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

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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.

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Share how you cope with stress.

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.

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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.

Psalms 32:7

“For you are my hiding place; you protect me from trouble. You surround me with songs of victory.” Psalms 32:7

There are days living in the Spoonie world is difficult. Thick anxiety is layered within. Fear of those two heavy words.. what if. There have been an abundance of moments on this journey where I wanted to hide. Like a timid child hidden from the melody of an intimidating thunder-storm.

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When we were children, we didn’t just hide out of fear. Hiding provided entertainment and excitement. The anticipation of being found remains unwavering. However addition positive emotions associated with hiding have melted with age. Negative slush traps us.

Hiding provides an escape. For even a moment I would like to escape the burdens of the Spoonie world; the doctors, medication, testing, emotions… the burden of being a spoonie.

This verse reminds us of our ideal hiding place, which is the Lord. In the mists of chaos and struggles we can crawl into the Lords compassionate arms. He is our hiding place. He is the source of all we need; our everything.

The Lord knows everything; his understanding is unhindered. He spares us from countless tragedies. He gently guides us through each storm.

There is a blissful victory in Jesus. He allows each moment of our lives to work together and bring Him glory. Though I may walk through the valley of the shadow of death melting from the negativity within I know somehow the Lord will receive glory. There are many things I do not understand. But I refuse to allow the burdens of the spoonie life to hinder my faith. Despite it all I will praise the Lord. With a heart of gratitude and wonder I will thank the Lord for my struggles. For he will receive glory and victory. Blessings are woven into this season. He will transform it into a master piece. It will be used for something beautiful.

“Nothing in your life has happened by chance. You are here exactly at this moment in history with exactly the circumstance you have encountered because God has a specific task he wants you to fill.”  The Lord has an astonishing purpose for your life. He will use every negative thing for good, to encourage others. Keep faith. When you cannot take another step, rest in the sovereign arms of God.

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She is the Clay

Tears have made her face moist

She’s longing to hear your voice

Seeking guidance to make a choice

She’s waiting day after day

Knows you are the potter and she is the clay

Things will fall into place in your time

Not alone in this climb

You’ll get her out of this bind

Let her know you’re near

There’s nothing to fear

Make her path clear

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Disability Center

I am preparing to live on campus in a few short months. Recently I did all the paper work for the disability center.
It is best to register with the disability center at the beginning of the semester, even if you are in remission. You never know how the semester will unfold; being sick is unpredictable. It is best if everyone is aware that you are chronically ill. If you had a 504 plan it will follow you to college. If you don’t that’s okay, most colleges will still work with you. 
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Personally I meet with disability before any of my classes begin. We discus my health and what accommodations would be helpful for me. I sign some papers giving the disability center permission to speak to my professors on my behalf. In addition I e-mail all my professors. I know a lot of people hesitate telling administration about their illness. Personally I believe it is important to try to be open about being ill. I think being open allows others to be open and find encouragement as well. I share a lot of information with my college which you will see in the e-mail I sent to my professors this semester. I am open with my health for several reasons. When I do classes on campus I feel sharing everything about my health is for the best of my well-being. This way everyone knows what to do in the event of an emergency. I do have a history of passing out. If for some reason I could not speak or could not remember basic information my professor and disability would know and be able to share it with paramedics or emergency room staff. Whenever I am not home I wear a medical ID bracelet with basic information on it. In an emergency it is important for those around you to know what illnesses you have, what medication you are on, what medication you are allergic to, and who to contact. The paramedics will  not look in your wallet for a list of medication without your consent. On my ID bracelet I put, “On meds, check wallet.”
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Sorry about that tangent, let’s get back on topic. I also share this information so my professors know that I will miss class sometimes due to flares, doctors, or treatments. I feel it is best to be up front about my health so that they can assistant me through out the semester as needed. Here is a sample e-mail: Dear Professor Name, I hope you are having a wonderful summer. My name is Victoria Guyadeen I will be in your online, Fundamentals of Nutrition course, BIOS 107, this coming semester. I am e-mailing you to inform you that I am Chronically Ill. Mrs.Smith from the disability center at the college will also be in contact with you before this semester begins. My main illness is Systemic Lupus Erythematosus. Lupus is an autoimmune disorder, in which the immune system becomes over active and confused. A person immune system should fight off bacteria and infections but when someone has Lupus it attacks the body. It can attack major organs, the skin, joints, and many other things. The symptoms vary from person to person, from day to day. A flare refers to when the disease is active causing increased pain and other symptoms such as fever. Lupus can range from mild to life threatening. I have several over lapping illnesses along with Systemic Lupus Erythematosus. These illnesses are: Asthma, Raynaud’s phenomenon, Endometriosis, Arthritis, Fibromyalgia, Osteoporosis, Anemia, IBD, Supernumerary Kidney, Kidney Stones, and Migraines. I also have brain fog due to Lupus. Brain fog has to do with memory. It can range from mild to severe. Mine is moderate. I get lost frequently, forget words and basic information, and sometimes I forget who people are. I am still learning how to work with academically. Due to brain fog I might ask for clarification for certain assignments. Like anyone who is chronically ill I have good days and terrible days. However I never know when I will begin to flare or end up in the emergency room. I still see my doctors frequently and go through intense and time consuming medical testing. Currently I am under the care of four doctors. My doctors are about two hours from where I live. I have begun a new treatment for my Lupus, it is called Benlysta. Benlysta is an IV infusion; I receive it once a month on a Friday. Between the car ride and infusion it takes anywhere from six to eight hours. Of course I will do any assignments a head of time when my treatment is coming up. This is my third year of doing online learning. I enjoy online learning. The flexibility is priceless for me. I am able to work super hard on my good days which allow me to rest more on bad days. I normally work ahead to some degree in case I begin to flare or have doctor appointments. I also work ahead to keep my stress a level down which is vital. Despite my illnesses I set high academic goals for myself. One academic goal I have set for myself for this coming semester is to achieve at least a 3.8 GPA. I am extremely excited to be taking this class and I look forward to working with you. I will attach the letter my primary care doctor wrote for disability. Over the next few weeks disability will e-mail you a full list of my accommodations. Please give me 48 hours’ notice if you decided to change the instructions on an assignment. If you are willing to give me a copy of the syllabus for the fall that would be greatly appreciated, this way I can coordinate with my doctor’s appointments. Thank you so much for taking the time to read this. I apologize for it being such a long e-mail. If you have any other questions or need more information about anything please do not hesitate to e-mail me. I try to be extremely open about my health. I feel the honesty will help me succeed in college. Thank you once again. I hope you enjoy the rest of your summer.
Sincerely, Victoria Guyadeen
(*Note this is an old letter from a few semesters ago).
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How much you share about your health is completely up to you. Learning how much to share and how to balance college life and an illness takes time. Be patient with yourself. Enjoy your time in college.
Please: Let me know what else would be helpful for you. I could show samples of doctor notes to the professors and accommodation list. Or what other tools would be useful for your college journey.