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!

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Good Night Encouragement

Today was far from perfect, never the less it was a blessing. You did your best which is all anyone can expect. Every day you are faced with many obstacles, which you gracefully overcome with determination. You might feel like you are dragging your body through the day like you are going to collapse from all the pain. Yet every day you accomplish so much.  You are doing an amazing job! You might not be where you want to be and that is okay, you will get there in time. You are doing a fantastic job where you are in life right now. Don’t be too hard on yourself. Be grateful and proud of the small accomplishments.

Be compassionate to yourself tonight. Take a few moments to reflect on all your amazing accomplishments and blessings. Do something nice to recover from this long day, take some me time. You need to be nice to yourself it not only benefits you but also those around you.

You are an inspiration and a blessing to many people my friend. Your friendship is priceless and very precious. Everyone you encounter is blessed by you. Bless by your smile or your kind words. The strength you display is yet another blessing to others. Inspiring them to be strong in the trials they face. You bless many people daily.

I pray that the Lord would be with you this evening as you unwind and prepare for bed. I pray that you would fall asleep quickly, stay asleep through the night, dream sweetly, and wake up with a lot of spoons.

Prednisone: Part Two

Prednisone: Part Two: My Experience

I have been off and on Prednisone for about a year and eight months. The majority of the time I was on a low doses, less than 20 mg. My first round was a two-week quick taper for pleurisy. I did amazing and felt great. The only down side was I was moody. I cried a lot and had anxiety.

I was put back on a low dose for Lupus. I experienced different side effects which included moodiness, moon face being a neat freak, and some insomnia. My doctor attempted to taper me, but at the time I had a sever kidney infection. Tapering off of Prednisone while flaring is not an easy task. I was later informed that Prednisone was the only thing that kept me out of the hospital. Though I was in Urgent Care every day to every few days for IV antibiotics. In addition to the lovely infection that made itself at home in both of my kidneys, I also had a surplus of kidney stones.

Some doctors enjoy playing the lets diagnose you again game, which for the record I am not a fan of. I was taken off all of my medication and my body went hay wire. After a few weeks I tried to get in to see my doctor but was denied an appointment. A Fibro doctor I had been seeing, who ruled out Fibro, helped me get in with a new doctor. I was diagnosed for the eighth time with Lupus. Along with my other Lupus medication I began a low dose of Prednisone and Benlysta. My doctor attempted to trapper me, but my body thew a fit every time. I was able to get down to five mg.

In the hospital the doctors tried every medication they could think of. When nothing helped they began discussing the possibility of increasing the Prednisone. After days of no improvement, many debates among the doctors, and discussions I was put on 60 mg of Prednisone. The relief was almost immediate. The one doctor was shocked how well and quickly my body responded. The plan was to do a five mg taper for a month then follow-up with the gastro.

I had gotten down to about 50 mg, with no additional Lupus meds other than Plaquenil. I woke up a Monday morning at four am. My pain was intense, close to breaking the pain scale. I tried to use the bathroom, bending was terrible. I felt like my keens were going to break from the amount of pressure and pain. I tried icy hot and triger balm. I attempted to lay back down, but couldn’t. It hurt to sit just as much. The pain in my joints and abdomen was terrible beyond words. Around six am I went to my mom, I couldn’t breathe the pain was so intense. I called the on call doctor who was no help at all. Hours later after a few more phone calls I was fit into the doctors schedule. She increased my Prednisone to 60 mg.

It’s been about a month. This is the longest I have been on this high of a dose. I still have difficult days but the pain has greatly improved. My moon face seems to grow daily. It’s gone from assisting me in looking healthy to, “What  happened to your face?”. Yes people do ask that. I have gained weight. Though now I am close to what I should t I am self conscious about the weight gain. That probably sounds weird. I have grown accustom to being under weight. I do have some insomnia and weakness, I would love to blame it on the Prednisone, but I am not convinced it is the Prednisone. Overall, my body responds well to Prednisone, almost too well. I am extremely grateful for the relief and assistance it provides. I look forward to getting off of Prednisone. However, I also dread tapering. Personally, I believe it will go much smoother if my treatment plan is tweaked.

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Share your experience with Prednisone.

Encouragement

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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.

Birthday

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

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

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

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

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

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

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

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

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

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

Fabulous Friday

Chronic illness and medications change us in various ways. Hopefully they improve our health to some degree. Sadly side effects come with every medication out there. If you are chronically ill there is a good chance you have heard of the lovely medication prednisone. Most people have a love hate relationship with prednisone.

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Today I am going to address only one of the side effects of prednisone. Moon face also known as chipmunk cheeks. This occurs because prednisone makes the body retain salt and water. The face swells up and becomes round. In perspective moon face is honestly not that bad. It is simply annoying.

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Moon face tends to effect self image, negatively. If you are dealing with moon face currently, you are not alone, I’m right there with you. Yes, it stinks. It is difficult to deal with. Remember though you are on this roller coaster ride of a medication for a reason. It is tor help improve your health and to help you feel better. Hopefully it will throw you into remission quickly. No matter how round your face is you are still you and you are absolutely beautiful! Neither you beauty or your worth is measured by how you look today or how you use to look before your illness attacked. You are an amazing person, with so many talents, you are a warrior, you are courageous, and so much more.

I know many girls, myself included enjoy wearing some make up from time to time. You are perfect just the way you are. Beautiful without make up. If you do wear make up I want to share a few YouTube predisone make up videos with you. I personally do not wear make up everyday. However every so often I like to pretend to be normal. Wear make up, do my hair nicely, and dress up a bit.

Makeup for a Prednisone Moon Face! 

https://www.youtube.com/watch?v=C16C4aHZZfI

Quick and Easy Tutorial for Moon Face due to Prednisone

List of Make Up Products I Currently Use: 

Bareskin Foundation By: Bare Minerals 

Concealer By: Bare Minerals

Bronzer Booster By: Physicians Formula

Pumped Up Colossal Mascara By: Maybelline

Silkissime Eyeliner By: L’oreal

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Share your moon face photos in the comments.

Hope you are having a fantastic Friday! Sending lots of spoons, prayers, and warm hugs your way ❤

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.

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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. 

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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.

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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.

New Years Encouragement

“The new year is indeed like a clean slate of fresh snow. It hasn’t been marked yet by countless tracks of pain. We can’t see the broken branches and other debris of problems hidden underneath. We haven’t gotten stuck in the slushy and muddy melting repercussions of our struggles.” Bronlynn Spindler

This New Year is a new start, embrace it with an open heart. Let go of all negative things from the past year. I pray this Holiday season has renewed your strength and your hope. Over the past year you have overcome many hardships, you have grown as an individual, and you have accomplished so much. You have won many battles against your illness. You have demonstrated admirable strength, courage, and hope. I hope as you reflect on 2014 you are able to be proud of the things you have accomplished. I hope you see all the blessings of 2014. (Please share how 2014 blessed you in the comments.) You have been an encouragement and a source of hope.

This year will be drenched with blessings and many breath taking moments. No doubt there will be struggles and setbacks. There is no need to worry about the negatives. Focus on living each day to its fullest and cherishing every moment. You will be provided with all the strength and everything else you need in order to achieve victory. This will be a year glowing with beauty.

May the Lord overflow your life with joy, blessings, love, and goodness this year. May he guide your every step. May you grow closer to him daily. May you embrace every moment. I hope you are able to love life and understand how valuable you and your life is. May you fight with all you’ve got against your illness. May you hold onto hope when the world seems to be caving in around you. You will accomplish breath taking things this year. You will make a difference. Your precious story will bring hope, comfort, and encouragement to many people.

What is your New Years Resolution?

What do you look forward to in 2015?

HAPPY NEW YEARS!!! Sending prayers, spoons, and hugs ❤

“Forget the former things; do not dwell on the past.  See, I am doing a new thing!  Now it springs up; do you not perceive it?  I am making a way in the wilderness and streams in the wasteland.”  Isaiah 43:18-19

Welcome December

I adore the Christmas season, it is absolutely magical. Beauty overflows all around from stunning lights to warm smiles to traditions and so much more. Christmas carols sweetly fill the air. The Christmas season brings joy as it reassures us gently that things will be okay. It helps us connect with our inner child reminding us of the wonderful Christmas memories. At the same time, it encourages us to move forward filling us with a hope like no other. It unites us with those we hold dear in our hearts. I cherish every aspect of Christmas.

Unfortunately chronic illness and the stressful demands that go with it does not take a holiday. The doctors appointments, treatment, and testing still must be done. Chronic illness tends to complicate things and get in the way of our joy during this season. It is easy to lose focus of the beauty in this season when we are consumed with emotion and pain. When the world seems to be caving in on us and everything seems to be falling apart. Chronic illness isolates us. We feel the effects more so this time of year. Finding a balance between doing things and resting becomes more difficult. For some, this season is depressing, reminding them of all they cannot do.

I hope you are able to take the time to rest and reflect this holiday season. Take to reflect about all the ways you have grown as an individual, all you have accomplished, all the blessings in your life, and everything you have overcome the past few months. You, my friend, have come so far. I am proud of you. You deserve to take time for yourself this busy season. You are an inspiration. Your story is breathtaking and laced with beauty along with encouragement it will change lives. I pray your strength is renewed. The Lord will bless you greatly this season, be open to all he has to offer for you.

I pray you would have a flare free Christmas season. I hope that despite your pain you are able to enjoy this season of blessing. Cherish every moment with those you hold dear to your heart. Hold onto the Christmas spirit. I pray that this season would bless you with little to no pain, plenty of spoons, memories, joy, and love. “It’s beginning to look a lot like Christmas.”

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