Seriously, I Can’t Hear You

I can’t hear you. Could you please repeat that? No, I did not hear you come in. I am completely serious, though it is hard to believe at twenty-three. I previously blogged at my hearing loss mentioning a couple unstable theories. Shortly after, receiving my HHT diagnosis, I was told I needed my hearing checked. The doctor who relayed the message was skeptical because she had been on my case for a brief amount of time and was unaware that I had issues hearing. To be fair, the doctor who ordered it was never told either. Simply, because it never came up, furthermore, it did not seem relevant

I went through an intense hearing test while I was having no trouble hearing. I found out a few days later that I have extremly mild bilateral hearing loss. However, was not mentioned at the appointment, I am guessing because it is so minor. There isn’t anything to do, but it is a great thing to know.

If you went undiagnosed for any significant amount of time you understand the value of a reason for dictating symptoms. Though there are an overwhelming amount of questions at times without answers, having a name to the monster helps. The name doesn’t not by any means make the road any easier it just makes someone feel validated in their bodies rebellion.

 

Fasting

I am honored to begin this journey through the study Finding I Am, with you. I am confident that God will do an awe-inspiring work in you. He will continue to transform your heart to reflect His. Prepared to be deeply blessed!

Lysa opens the book discussing spiritual giants and fasting. There is something powerful in giving up food (or something else) in order to sit at the Lord’s feet. Worship becomes richer. The encounter with the Lord is deeper.

I grew up in church. Sometimes I was there as often as I was at home. The twenty-four-hour famine was on my bucket list for years. Finally, I reached youth group age.  I sprang into motion once the signup sheet was out at the tender age of twelve.

Our last meal was at school directly after we headed to church. The leaders pour a lot of time into crafting memorable games, worship sessions, juice breaks, and other activities.  Many details I cannot recall, but I know it was a time that I grew closer to God.

Seconds before communion, which is how we were breaking the fast, I grabbed my friend. Instructing her to get help. I wasn’t able to see. I passed out. However, that didn’t dampen my experience. Shortly after recovering, I asked when we could do the event again. That experience led me to a season of regular fasting on my own.

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Fasting provides a unique way to encounter God. Jesus taught about fasting, “and when you fast, do not look miserable as the actors and hypocrites do when they are fasting—they walk around town putting on airs about their suffering and weakness, complaining about how hungry they are. So everyone will know they are fasting, they don’t wash or anoint themselves with oil, pink their cheeks, or wear comfortable shoes. Those who show off their piety, they have already received their reward. When you fast, wash your face and beautify yourself with oil, so no one who looks at you will know about your discipline. Only your Father, who is unseen, will see your fast. And your Father, who sees in secret, will reward you” (Matthew 6:16-18).

In this season of my life, due to my combination of chronic illnesses, I cannot fast from food. I want to encourage you if you are in a similar situation. All is not lost if you cannot fast from food. While it is an amazing experience, your current health situation is not a surprise to God. His grace extends where our bodies fail.

Fasting can be done in numerous ways. Some non-food suggestions are fasting from technology, a television series, or a hobby. The goal is to spend more time with God. Giving Him your undivided attention. To enhance your relationship with Him. Time away from something allows more time with God.

Lord,

We adore your precious name. You are worthy of all honor, glory, and praise. You reign victoriously. Awe-inspiring, faithful, and sovereign.

Thank you for the gift of fasting. We praise Your name that Your grace extends into the depths of where we lack. We praise You for providing a way where we see none. Thank you from the bottom of our hearts for the time we spend alone with You. The time we worship You, seek Your face, talk with you, and spend in Your living Word.

Allow of Your children who read this to grow closer to You and to experience You in a unique way. Burden their hearts for You. Set their soul on fire. Bless this Bible study in an awe-inspiring way. Beyond our dreams. We praise Your Holy Name.

Amen

Happy Birthday

I have written creatively for as long as I could hold a pencil. These are two fairly old poems written in honor of my mom for her birthday, today. I could not have asked for or dreamed of 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. Sh 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. Thank you will never be enough. Happy Birthday, Mom!

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Fancy dresses princess messes

Twirling on toes

Bubbles to blow

Picking flowers as laughter showered

 

All part of the little girl I once was

Butterfly kisses before

Bedtime prayers

Daddy’s little girl

Mama’s little helper

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Innocent

Curious mind

Carefree girl in a perfect world

 

Even though times seems to fly

The years go by and by

Simply in a blink of an eye

Memories engraved are meant to last

Of the little girl, I once was

Spreading my wings I fly

Far way and so many things

But I’ll never forget the little girl I once was

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Dainty soft pink slippers twirling high on toes few doors remained closed life an open book

Tapping rhythm to a new song always found a safe place to belong never even had to look

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

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The whole world lay in my back yard the only attack needing to be dodged was by dragons

Only things exist are what we created, only innocents of the wild imagination

Exploring wonderland unplanned adventure in all kinds of weather

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

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The world seemed against me could not yank free from the chains, oh the lies being fed to me

Unknown sadness filled my eyes had no reason but no choice I had to cry

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

Finally, I belong; these memories blanket my soul uncovering things that were buried in that hole

Overwhelmed with agape to the point of speechlessness anointed with blessing

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

Oceans away miles apart I long for the peace covered in that place the ground covered in grace

It is how I escape all the troubles of the world love falling like rain soaking everyone in its embrace

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

Only pictures remind of the past, memories fade with rain cause we know they never truly last

Pain consumes every inch of my being prying me away from the life that once was

Learning to dance in the storm though I pray for life to return to the norm

Feels like just yesterday somehow it just faded away

Now I lay counting laughter and teardrops

 

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“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 heroes. 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.

This Is Chronic Illness

How the melody began of the symphony “the Spoonie Life” is unique to each of us. However, like a ton of bricks, the news crushed us emotionally, which no preparation could brace us for the sudden shift in song. Lumped into a group of over 125 million American’s who are in daily combat with their bodies due to chronic illness. After all, these are Invisible Illnesses.

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Adjusting to the new role. A list of things we can no longer do. Harsh comments as well as the stairs, seem to greet us everywhere. Friendships fade away. Symptoms and pain consume each day. Functioning seems nearly impossible. Daily medications. Frequent breaks. This is chronic illness.

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Well-meaning doctors increase anxiety levels. Medical testing is never ending.  No one seems to know what to do. At times our health is out of control and all we can do is ride the roller coaster and pray. Help seems just out of reach. This is chronic illness.

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Yet we cling to hope because our lives depend on it. Dreaming. We find that reason to keep fighting. This is chronic illness.

This week is Invisible Illness Awareness Week. A week to honor you and to give you a voice. To equip you to fight your battle a little better. Making the invisible visible. Making those around us more aware. Hopefully, others will understand the reality of chronic illness.

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My friend with an invisible illness, you are brave, diligent, and compassionate. You overcome  negativity.  You have battled your invisible illness gracefully. You are an inspiration. Don’t give up! You are beautiful. You have an amazing purpose and you are making a difference.

Matcha

Matcha Tea is a newer trend in the tea world. I have heard many positive things about it. After conducting my own research, I knew it was something I wanted to try. The health benefits are astonishing. Due to the excessive amount of antioxidants, it is considered a super food.

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The health benefits are astonishing. Due to the excessive amount of antioxidants, it is considered a super food.  Matcha assists in detoxing the body, burning calories, helps regulate blood sugar as well as cholesterol,  and relaxes the body. Additionally, it has fiber, vitamin C, selenium, chromium, zinc, and magnesium. Matcha enhances energy levels and focus. Now the good part! There have been studies done that show Matcha helps with inflammation and autoimmune diseases. Of course, more research is still being done. Anything that can help chronic illness even a tiny bit is an assist in my option.

Matcha is different from the average tea. It is a fine power whereas most teas are tea leaves. You drink the entire tea leaf (which appears as a powder) thus reaping greater health benefits.

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The great thing about Matcha is you do not have to drink it as hot tea, there are other ways to enjoy it. It can be served as a cold tea, mixed in with milk, or added to a smoothie. There are additional recipes that include matcha as well.

I recently bought a small pack of Matcha Tea from Teavana. I am going to try replacing my morning black tea with Matcha tea for five to ten days. Hopefully, I’ll feel an improvement with at least energy levels and my focus.

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I invested in the ten single to go packs ( ^ In the picture above). Teavana also has various flavors of Matcha tea such as peach, chai, and jasmine. I went with the basic one because of my abdomen. At times, sweet teas make me nausea. Either way, Matcha has a bold taste. Here’s the description off the Teavana webpage, ” Stoneground from shade-grown, chlorophyll-rich tencha tea leaves harvested for their luminous flavor, emerald color& vital antioxidants, each sip supports energy.Vibrant tench green tea with a rich, savory flavor & exquisitely silken finish.” 

For more Matcha information check out: http://matchasource.com/

Have you ever tried Matcha, if so share your experience in the comments!

*Note: This is just something I stumbled across and after much though  decided to try. This is just what I have learned and experienced, I am not advertising or being endorsed by anyone.

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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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.