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.


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.



 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.


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.



Five C’s of Coping with Stress


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.


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.


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.



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.



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.



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



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.


Share how you cope with stress.

A Caregivers Perspective. Part One.

Being a Mom of a Chronically Ill Child

Written By: Eileen Guyadeen

Being a caregiver of one who is chronically ill comes with countless challenges. Caring for an ill child is one of the most difficult things to do. Those who are ill rely completely on their caregivers. Being a caregiver can be a lonely, overwhelming, and blessed road. This post is to honor all caregivers, especially my own, my mother Eileen Guyadeen. Without her I would not be where I am today or who I am today. I could never express enough gratitude for all she has done for me.



My daughter Victoria who writes this blog for chronic ill people, ask me if I would write something for it. I will start at the beginning, Victoria was born on my birthday which is January 28, 1994. She was a healthy baby at 6 lbs 8 oz. A blessing in every way possible, especially when my own doctor told me it will be nearly impossible for me because of myself having endometriosis, and like I told the doctor he is not God, and I truly believe with God all things are possible. My pregnancy went pretty well, listening to my doctor and doing whatever I needed to do to have a healthy child.


Victoria was an active child by the time she was two and a half I had enrolled her in ballet classes, and she simply loved it too. She was small for her age and I kept her first ballet and taps shoes for my keepsake, because the dance teacher had a hard time finding things to fit her. She always loved playing outdoors all the time, during the summer she played in her pool, with her toys, and even loved reading outside all thru the beginning of her teenage years. In every way possible Victoria was always an active child. However over the years since she was a baby Victoria always seem to get a lot of viruses, doctor couldn’t always explain it to me why she did, always missing a lot of school. I remember by the time her ninth birthday rolled around she had a lot of stomach problems, she was out of school for three months, I finally started to record everything she ate and it was the diary that was making her so sick, so I cut it out from her diet. I spent plenty of times in the emergency room with her stomach problems never to know what was going on, and more important never an answer for what was going on.


By the time she was in middle school when I took her to the doctor for the problem, her doctor thought she was trying to get out of going to school. I brought in her report card showing this child was an honor and high honor roll student, and loved being in school. Thru out high school my daughter’s health got worst, going thru five operations in four years. Her health got worst by the time she was a junior in high school that she was on homebound for school. By the time her senior year was about to start the principal of her high school share with us if Victoria miss more than ten days of school she would not be able to walk at her graduation. So with that statement Victoria ask me if she could Cyber School her senior year, and I agree that she could. She finished her senior year with 3.7 GPA, the night of her graduation it was very painful for her to walk at the ceremony, and I cried with her and said I know however you did it with honors in spite of your pain.


Since Victoria graduated from high school things for her with her health has gotten worst. Doctors never can make up their minds for a treatment plan for her, it makes a person’s head spin. I have been ask so many times, how I do this with my daughter’s health. My answer to the question is my faith in the Lord Jesus Christ. With everyone appointment rather a doctor appointment, a trip to urgent care, test, or even the emergency room, and hospital stay, I carry along with me my Bible, why because I begin to search the scriptures for God’s promises. In the book of Jeremiah 29:11 it says For I know the plans I have for you declares the Lord, plans to prosper you, not to harm you, plans to give you hope and a future.  Victoria is a gift from God and I do believe that he loves her even more than her dad and I could ever love her.  Every time my daughter cries in pain, I say to her that God didn’t give us a spirit of fear, and I can do all things thru Christ who gives me strength (Philippians 4:13) we have cried together, as well as something more important which is to pray together. For God to give her the strength going thru this, as well as wisdom for her doctors, to see what He sees inside of her, because Jesus is the great physician. It is never easy, right before my daughter went off to college I had a meltdown. Yelling at God what did my daughter ever do to deserve this horrible disease, and then finally after I stop being angry at God, I heard a voice in my heart then why my son (Jesus Christ) in your place on the cross, I never ask that question again. I am always asking God for the strength thru all of this, we travel two hours each way to her doctors, and yes there has been many times I am total drain with running back and forth. I also have two other children to care for, which at times I feel as thro I have short change them thru this. I try to remember different things to get me thru, Stop, Drop, Kneel, and Pray, I have relied on God to get us thru this with my daughter. Jesus never promises anyone that once we accepted him as our own personnel savior, that our lives would be easy, he promises , surely I am with you always to the end of time (Matthew 28:20) I have seen my own personnel walk with Christ change for the better. I wanted to show Victoria, as well as my other two children, that life can become very hard for us at times, and thru those difficult time we need to run to the Lord, not away from him. Lean on Jesus and give him our burdens. In the gospel of Matthew 11:28 Jesus says these words Come to me, all you who are heavy burdened, and I will give your rest, Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden light. If anyone ever read the poems Footprints in the Sand, as you read these words it says, Lord you say that once I started to follow you, you would never leave me, so I don’t understand why was it at the difficult times I saw once one set of footprints, and the other times there were two. He replied my precious child during those hard times, it was then that I carried you. So I can picture during these hard times Jesus is carrying my daughter. Victoria is in the process of finishing her second year of college, in which she has been doing on line for a while. In thru all of her pain, doctors, test etc. Victoria has manage to be on the Dean’s list at Sussex County Community College, with a 4.0 GPA, as well as being inducted into the international honor society this past March. In the fall she will finish her BA degree at Centenary College which is not far from us, and then hopefully on to Drew University for her Master degree. Thru all of the medical problems that my daughter has gone thru so far, I have totally relied on my church family for prayer, as well as other family or friends, because pray to me is an essential tool we need to have with our daily walk with Christ. For me thru all of this I continue to walk with my Lord, with prayer, studying the scriptures and being involved in my church and just serving him. I continue to thank God for choosing me to be Victoria’s mom, I have been the one who has been bless. Yes it has been difficult with her disease, you see she has lupus which is an autoimmune disease, however it doesn’t define who she is and that is she is the daughter of the most high king Jesus Christ.


Paw Prints on My Heart

A post honoring my furry friends who have left paw prints on my heart.

This post is a bit different then what I usually post. It is something that was on my heart to write and share mainly to honor those in the post.

My love for animals began before the sweet air of this world kissed my lungs. While my mom was expecting, our cat Buttons gently cuddled up against her abdomen, played with me as I kicked, and purred a calming melody. I developed a deep love for animals, they have always had a special place in my heart. Growing up I was surrounded by furry friends including two cats, a dog, bird, rabbit, and a few stray cats. I jumped at the chance to meet and play with other animals. Just like no human knows how long they have on Earth, no animal knows. Many times they depart too soon. I lost many of my friends in a very short period of time. I’m going to talk a bit about my friends.


I got my dog Hannah at seven years old. I desperately wanted a sister named Hannah, but I got a dog. Hannah and I were inseparable, best friends. She was gentle, sweet, and full of love. She adored people and cats. It worried Hannah to say the least when I became ill. Hannah made sure I stayed on a schedule. If I was up late she would sit on the stair case whining until I began getting ready for bed. Then she would make sure I shut off my light by a certain time. Hannah either slept next to my bed or in my bed with me. She knew how to get help if I was in trouble. If I fell she knew how to help me up. I never questioned my safety with her around. In the nice weather we would go for a walk around my house, she was afraid of leaving the property. We thought she had developed asthma like me. The vet was surprised to tell us that she had lung cancer in both lungs. I begged her to passed away at home. I could tell she was in pain. She got worst hourly. We had hoped she had more time. She passed away at the Vet’s four days later. She was bleeding internally as well. Looking back I am grateful for the time I had with her. Of course I wanted more time but she lived a long and happy life.


Hope was a different cat. She was found in the woods with her brother, deserted by her mother. The first night we meet I told her bluntly that she was my cat and that I would love her. As soon as I turned my back she hid then I frantically searched all over my room for her.  She had sever anxiety, depression, and interstitial cystitis. I worked with her and she became like a new cat. She would throw her food or eat using her paw. She would answer any time someone asked her a question. Once Hannah passed away, Hope became the one who watched me. Her fur was beautiful and extremely calming to me. Shortly after I got Hope, I got Grace (who is turning three soon). The three of us were very close. The girls adored one another. They protested me going away to college by attempting to tear up my suit case and unpacking my clothing.


Tommy was born in my house two weeks before Hope passed away. His mother is a stray named Fluffy Fluffy invited herself into my house one day and had a litter of kittens. She wanted someone to hold her paw the entire time which was over twenty four hours. Tommy was the sweetest kitten with the ideal personality. He wiggled his way into my heart and had no intesions of leaving. When he was a few weeks old I talked to him for a few minutes until we fell asleep; he knew I was sick and wanted to help. He loved plating hide in seek and he loved stuffed animals. He was an extremely bold and adventurous kitten. He loved to play and loved to run on his tipy toes. The love and excitement he had for life was admirable.Tommy was always purring. Anytime he got in trouble all I had to do was say his name and count like mothers do for their children,and he would immedeity stop, sit, and look at me.The memory of the day he passed away is still fresh in my memory, it was a heartrending experience. I am usually a level headed person who is fairly calm in perspective. Tommy was just over six months old and it was  his time to get fixed. The phone rang earlier then I expected and I had a terrible feeling. Though I could only hear pieces of the conversation I knew he was gone. I literally lost it. Screaming. I had just lost Hope five months ago. Tommy was only six months. I couldn’t do it. He was too young. It was the worse feeling. The vet told my mom what happened and was running test to find out why. He did well in surgery. After he stood up, fell over, and passed away. The vet found out that Tommy had heart disease and a blood clot near his heart, which of course was unexpected. He most likely suffered a heart attack.


Grieving with a Chronic illness is difficult. I doubt there is any advice that I could give you that would make the grieving process any easier. If you are grieving, I am deeply sorry for your loss. Grieving can cause flare ups and complicate things. I cried rives each time. Allow yourself to feel any emotion that you need to, it is healthy. Personally, making collages, talking, writing, and reading quotes helps me cope with this agonizing process. I also spent a lot of time with Grace, my cat and Fluffy the stray. They provided me with so much comfort. Though time does not erase what has occurred, it does help to a degree.


One of the most difficult things for me has been memory loss. I am afraid that I will completely forget my beloved friends. It is a burden which has consumed my fragile heart at times. I already feel the memories slipping through my fingers, quickly fading away. No matter how many of my memories desert me, I know I will always deeply love them and cherish the time I was blessed to have with them. These furry friends have left paw prints on my heart.


Coping Part Two

Coming to terms with any chronic illness is difficult. There are different stages one typically goes through during the season of accepting and adjusting to a chronic illness. By definition to cope means, “to struggle or deal, especially on fairly even terms or with some degree of success. to face and deal with responsibilities, problems, or difficulties,especially successfully or in a calm or adequate manner” Ultimately to come to terms with something, such as a chronic illness.


Coping with a chronic illness, from my experience thus far, is not a quick one time event. Rather coping is weaved into my daily life, as my illnesses toss new challenges my way. There are a number of ways that I cope with being chronically ill, the frustrations of being medically unique, and the various other set backs that come with being ill.

I have always been a crier. Generally not tears of joy though or tears from a good movie. I cry a lot sometimes. If I feel like someone is mad at me or I did something wrong, I cry. Frustrations, feeling overwhelmed, and occasionally pain cause me to break down into tears. Some medications make me weepy. Allowing yourself to have a good cry, that you pour every emotion and frustration into can help. 


Creativity is a positive way to cope with chronic illness. For me this includes writing, coloring, crocheting,  or working on my Facebook page. Illness stirs up a rushing river of emotions, it is essential to let them out in a positive way. Keeping in so many emotions is unhealthy and can cause flares.

Connecting with other Spoonies has been a life saver for me. If you are newly diagnosed find a support group! It will be one of the best things you can do. There are countless support groups on Facebook, forms online, and face to face ones (Which the Lupus foundation has information on). Being able to relate to someone is truly priceless. Personally it has helped me feel normal. Support groups are a wonderful place to make friends, ask questions, vent, and more. In addition to support groups, like Facebook pages that advocate for your illness(es). If you have Lupus I strongly encourage you to check out the World According to Lupus. Facebook pages have encouraged me in simple ways, educated me, and made me laugh.


Another way I cope with being chronically ill is by sharing my story. Sharing you story gives other people the courage to speak out and share theirs. Your story will inspire, encourage, give hope, and change lives.

It is a well known fact that I adore my pets, of course they help me cope with my illnesses daily. I find a lot of joy in petting them and taking care of them. Pets are wonderful for your health. My cats always know how to make me smile by doing something funny or curling up on my lap

I know some people use music to assist them in coping. Currently music and I aren’t crossing paths much due to the fact I am not suppose to sing.

Everyone copes in their own way. Personally I am always searching for new ways to cope. Give yourself time to adjust to the Spoonie life. If you are able to continue doing things you have a passion for do it. If not find other things you are passionate about. Coping is difficult and changes frequently. You will be able to cope and move forward, one step at a time.

War Wtihin

My body has declared a painfully hatred war

Abruptly, opportunity slammed the door

Unprepared for the overwhelming sea of emotions

Will someone give me a reason for devotion?

Not all butterflies are pretty

Fighting a unique battle daily

Finding more strength than imaginable

Longing to be normal

Can anybody hear me?

An icy frighten tear escapes once again

Knowing there is no way I’ll ever mend

Shades of gray surround me

Longing to fly away to somehow become free

Not all butterflies are pretty

Fighting a unique battle daily

Finding more strength than imaginable

Longing to be normal

Can anybody hear me?

It’s worse than the flu on steroids, agonizing deep pain

Realizing I’m locked in these excruciating chains

The monster is awake, destroying all in its path

Let me fall into a deadly sleep to escape its wrath

Doubt consumes me, frustration overflows to tears

Screaming I attempt to give up

Pulling me gently, my friends remind me, I’m never alone

Showering me with encouragement, I continue

Not all butterflies are pretty

Fighting a unique battle daily

Longing to be normal

I am stronger then my illness, I will survive this