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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Friday Encouragment

Happy Friday, friend! I am beaming with joy because you have made it another week. Despite the difficult moments, you have thrived. Moving forward each moment you have claimed victory. You have demonstrated grace and courage this past week.

As you pour your cup of coffee reflect on the moments of joy this past week. Remember the victories of this week. You have made progress. Your worth is not measured by your to-do list or other people’s expectations. You are cherished just because there is breath in your lungs. Treasured, simply because of the unique person you are.

Allowing yourself to rest is indeed moving forward. Your body works hard. Rest is not wasting time. Rather it is preparing you for whatever task you do next weather that is getting some water or going out to visit a friend.

Embrace this chilly and lovely day with an upbeat attitude.  Remain firm in hope. Laugh as much as possible. Enjoy the small blessings. Let thankfulness consume your precious heart. Sending spoons and hugs.

The Heart of Worship

Worship is essential to our spiritual well-being. We were created to love and worship God. However, God does not need  you to worship him. He desires to be in close fellowship with you. He craves, for you to understand his love for you. Worship renews us providing us with joy, strength, peace, and much more.

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This song is a classic. Without knowing it many times our unfocused hearts, shove God out of the way; even during worship. We idolize other things or become prideful.  Our sin coved hearts begin to harden as we take steps backwards, away from the throne. How many time have we speculated how those around us are worshipping. In our minds saying, “She is showing off, that is not real worship.” Also allowing our minds to paint a captivating daydream. Consumed with our schedule, we fidget entertaining anxious thoughts.  Or we are more focused on the talent of musical ability than on the Sovereigness of God.  Music is a magnificent way to worship, but it is not the heart of worship, not the main focus.  Ironically, I am using songs to get me point across. The lyrics demonstrate truth,

“I’m coming back to the heart of worship
And it’s all about you
It’s all about you, Jesus
I’m sorry Lord for the things I’ve made it”

“The heart of worship is our heart, delighting in Jesus and expressing praise to him for the true things the Scriptures teach us about who he is and what he has accomplished for us.” God does not want us to participate in a drama production; he simply wants us to come as we are to authentically worship him. He knows our hearts. He knows every flaw and failure; every negative thing in our character and in our life. Despite this, he commands us to come as we are, as he lovingly extends his grace to us.

The majestic name of, the Lord is worthy of all honor. He lovingly crafted every corner of creation with passion. His fingerprints are evident throughout nature. “God’s glory is everywhere from the smallest microscopic form of life to the vast Milky Way, from sunset and stars to the storms and seasons.” Before God crafted the universe he construed a purpose for your life. Our righteous Lord is the source of life. Allow your heart to align with his will and worship his name.

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It is good to passionate pursue things, striving to succeed as hard work pours out. However, none of these things should become a god in our life.  In the spoonie world chasing after the Spoonie dream is easy. The dream of a perfect treatment plan, pain-free living, healing, or aspects of a healthy person’s life such as a social life. “To treasure God more than pain-free living.”  Do you treasure God more than anything in your life?

I love the words to this song though it the Spirt has showed me a lot.

“We must not worship something that’s not even worth it
Clear the stage, make some space for the one who deserves it
Anything I put before my God is an idol
Anything I want with all my heart is an idol
Anything I can’t stop thinking of is an idol
Anything that I give all my love is an idol

And we can sing all we want to
We can sing all we want to
And still get it wrong
Worship is more than a song”

If we are not intentional about riding our hearts from idols we, fall into the trap of worshiping them without even noticing it. The enemy longs to disconnect us from our creator. Keeping us away from worship is included in his laundry list of ways to diminish our faith. He attempts to keep us too busy to spend time with God, “the primary purpose of Sabbath margins- of saying no when appropriate- is to diminish our devotion to all other suitors and crystallize our allegiance to God.” Spending a substantial amount of time with God on a regular basis is not only a command the Lord gave us, but it is also essential to life. Time in worship allows us to be renewed in a unique way. Enter boldly into the Lords presence’s and worship him fully.

November

November whispers sweet melodies of autumn. As the crisp air begins to mingle with the aroma of chimes.  Fall fills the kitchen with apple and pumpkin treats as well as apple cider and tea. November is a month of thankfulness and preparation making the beginning of an extraordinary season.

I am praying for you this November. I am hoping you will find joy despite the pain, fatigue, frustration, and medical testing. Wishing you a low pain and symptom-free month.

May the sovereign Lord fill you with awareness of his mighty glory and love. May the Lord complete you as you construct your identity. He will reassemble the fragments of the past generating a stunning masterpiece. He will provide all you need in his flawless timing. Let your heart rejoice in him, O precious child of God.

I hope you make beautiful memories this November. I hope you accomplish any goals you set for yourself. That you are able to spend time with those you hold dear to your heart. Happy November! 

Lupus

“Yes, you need to know what Lupus is all about, but above all you need the strength and resourcefulness to battle with the wolf in its lair. The wolf will always be with you, but you can put a leash on it and make it heel.”

Lupus is known as the cruel mystery. People have heard of the illness before, but few know what it is and even fewer understand it. The way Lupus presents itself is as unique as our finger prints. Its complexity confuses medical professionals. Researches are working on formatting better testing, finding the cause of the illness, and developing better medication. Many aspects are highly controversial at this time such as causes of lupus and the diagnostic criteria.

So, what is Lupus? It is an autoimmune disorder in which the immune system is over active and confused. Those of us with Lupus are being attacked by our immune systems. It attacks anything from joints to skin to kidneys and everything in between. In a healthy person (or in someone who does not have an autoimmune disorder) the immune system fights off bacteria and viruses. It essentially works endlessly to keep you healthy.

If you don’t have Lupus I urge you to educate yourself, just a little. A little bit does go a long ways.

The search for a diagnosis seems like an endless and hopeless road. From my observations this is true when being diagnosed with any chronic illness, not just Lupus. The more I connect with those who are chronically ill, watch medical shows, or read spoonie stories I repetitively hear the horror of the individual searching for a medical answer. Many factors play into this inadequate testing, lack of knowledge in the medical field, bad doctors, the illness not progressed enough, ect..

If you are new to the Lupie World… Welcome. I know you’d rather not be a part of this ‘club’. I know that there are many emotions swarming you as you attempt to process everything. If you have been searching for answers to your symptoms, having a diagnosis is exciting and a relief in a way. On the other hand if you didn’t have any symptoms and no idea an illness had invaded your body I am sure this is utterly shocking. Where do you go from here? That is the million dollar question. A question that has a thousand answers but has no answer at all.

Allowing yourself to process that you have Lupus is important. I also advise that you educate yourself as much as possible about Lupus. When I got diagnosed I found the Lupus Foundation of America to be an excellent resource. Their webpage is great, in addition you can call them to ask questions. The Lupus Foundation also sent me information about treatments, living with Lupus, doctor information, and a magazine. I am so grateful that the Lupus foundation is the way it is. I cannot say thank you enough for the support and resources that I have received from them.

Life is never the same once you get a diagnosis. For better or worse things need to change. Most people need to adjust their life style, that is not saying that their life style was unhealthy. The life style of a healthy person is different then someone who lives with Lupus because the body needs different things. You will need to change your diet, how you exercise, and learn how to pace yourself. Of course, there is a good chance that you will need medication. Again I encourage you to do your homework. Educate yourself about the medication you are going to put in your body. Personally, I have a lot more confidence in trying a new medication when I know what to expect and the possible side effects.

Learning how to pace yourself is a huge challenge. Learning when you need to push a little harder and when you need to rest. Learning to rest is an obstacle for most people. Resting can feel like a waste of time. However, regardless of how you feel it is  a necessity. Your body needs to rest sometimes and that is okay. Resting can help avoid flare ups.

Lupus effects everything not just your body it effects your life and your emotional well being. It is essential to address the emotional roller coaster. Ignoring it and shoving it under the rug will only make things more difficult. It is tempting to shove the emotional aspect of Lupus under the rung most times, because there are so many other things demanding our attention. Depression and anxiety can be rooted in Lupus. Like any emotional illness sometimes depression or anxiety associated with Lupus can be treated with lifestyle changes other times medication needs to play a role.

Isolating yourself can be easy with any chronic illness. Many of us lose friends. It is difficult to keep in contact with people due to various symptoms, holding a conversation at times is utterly draining. Sometimes people avoid talking to others because of a rudely obnoxious lack of understanding. Even so, we need support. Isolation is not healthy for anyone. Having a support system is vital. In addition, I have found it helpful to find some support online through online support groups or pages an individual can like on Facebook.

I could go on for hours about Lupus and living with it. For now I will try to wrap it up so that this post doesn’t take too many spoons. I hope that you have found something in the post helpful. Welcome to the World of Lupus. You will be an amazing warrior who will demonstrate strength and courage daily. The road a head will be hard, but you have all the strength you need and you are never alone. Your story will give others the courage to keep fighting and to live their life.

How long did it take you to receive your diagnosis? What is the hardest thing about living with Lupus for you right now?

My favorite Lupus Resources:

http://www.lupus.org/

http://www.lupusny.org/

http://www.mollysfund.org/

Pages to like on Facebook:

World According to Lupus

Lupus and Me

Non- Lupus Resources:

http://restministries.com/

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

http://www.fightlikeagirlclub.com/

Memories Replay

Memories replay

Of dark gray days

Standing in the rain

With all the pain

Never forget

Every moment that took your breath away

When there was nothing to say

The scars are still there

Know that he cares

Safe in his arms

Away from harms

She told her everything will be okay

Sun will start shining brighter today

She is loved and accepted that’s where

She belongs

They’ll help her thought the rain

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.

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1.The illness I live with is: My main illness is Lupus. I have autoimmune and an additional half dozen.
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: Childhood.

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4. The biggest adjustment I’ve had to make is: Not being able to be in the sun not being able to be on my feet for to long.
5. Most people assume: That I’m healthy, faking, or lazy. That I don’t do anything productive on a regular day.
6. The hardest part about mornings are: Being dehydrated. Dizzy spells.
7. My favorite medical TV show is: Diagnosis Me
8. A gadget I couldn’t live without is: My heating pad.
9. The hardest part about nights are: Getting to sleep & saying asleep.
10. Each day I take __ pills & vitamins. (No rude comments, please) Currently about 15. I also do chemo, self-injections, once a week. Please no rude comments, but feel free to privately ask me about my treatment plan! =]

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11. Regarding alternative treatments I: I have tried a lot of different treatments. Currently in regards to alternative treatments I maintain a healthy diet, aroma therapy, and keep stress levels down. A lot of ‘natural’ treatments can be risky for my combination of illnesses.
12. If I had to choose between an invisible illness or visible I would choose: I don’t prefer one over the other. Most days I my illnesses are 110% invisible. I have worn braces or used walking devices and some people are just as judgmental. You’re too young to use that.
13. Regarding working and career: It is difficult that I cannot work right now. I am a full time college student and patient.

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14. People would be surprised to know: I am busy despite my illness. I try to be transparent about it in hopes that others can open up about their illness. In no way am I looking for sympathy I want to encourage, support, and educate others.
15. The hardest thing to accept about my new reality has been: I need to rest and slow down.
16. Something I never thought I could do with my illness that I did was: Achieve a 4.0 GPA.

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17. The commercials about my illness: Ha. They are great… now only if the TV would play them…
18. Something I really miss doing since I was diagnosed is: I miss being normal. Doing normal activities like going out with friends, mission work, and being outside especially in the sun.
19. It was really hard to have to give up: Doing mission work and being outdoors for extended periods of time (AKA on a sunny day more than 5-10 minutes)
20. A new hobby I have taken up since my diagnosis is: Running a Facebook page, a blog, coloring, and crocheting.
21. If I could have one day of feeling normal again I would: Something outdoors, maybe visit the ocean…One day mission trip? So many possibilities!
22. My illness has taught me: To cherish every moment.

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23. Want to know a secret? One thing people say that gets under my skin is: You don’t look sick.
24. But I love it when people: Listen. And are supportive.
25. My favorite motto, scripture, quote that gets me through tough times is: So many to choose from! I love, “The Lord will Fight for you, you need only to be still” Exodus 14:14

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26. When someone is diagnosed I’d like to tell them: To educate themselves. Allow yourself to grieve and to adjust to Lupus. Learning to pace yourself is key. You will inspire so many people!
27. Something that has surprised me about living with an illness is: How rude some people are, especially those in the medical field.
28. The nicest thing someone did for me when I wasn’t feeling well was: Spend time with me and being supportive. Don’t under estimate the power of a simple short conversation or a gentle hug.
29. I’m involved with Invisible Illness Weekbecause: I feel obligated to share my story and assist others with chronic illness in any way possible. My hope is that others will be encouraged, learn, and find support through my openness. I am bursting with excitement for invisible illness awareness week. I hope you will join me in learning about invisible illnesses, celebrating those who have overcome obstacles their illness has presented, and sharing inspiring stories. Together we can put a stop to the assumptions of invisible illness. We can make invisible illness visible. https://chronicallyhopeful2014.wordpress.com/2015/09/08/invisible-illness-awareness-week/

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 30. The fact that you read this list makes me feel: Excited.

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But You Don’t Look Sick

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“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.

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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.

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“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.

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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?

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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.