Seeking Bold Hope: Devotional from Rest Ministries

I read a devotional this morning from Rest Ministries. I wanted to share it with you. My hope is that it will encourage and uplift you. You are not alone in your pain or your struggles. Sending lots of hugs, spoons, and prayers.

http://restministries.com/2015/06/the-latest-from-lisa-seeking-bold-hope/

“What does it take to have bold hope in the midst of suffering? Lisa shares the latest on her health challenges and that devotionals are back!”

“Therefore, since we have such a hope, we are very bold” (2 Corinthians 3:12).

Bold hope.

Bold: showing an ability to take risks; confident and courageous.
Hope: a feeling of expectation and desire for a certain thing to happen.

Bold hope: Taking a risk–confidently and courageously–to expect and desire something to happen.

Earlier this week I was explaining to my mom how I knew it would be at least a few weeks before my life had any semblance of normalcy. “I’m not trying to be negative,” I explained. “But it is going to take time. As my blood count increases, my inflammation and pain will also increase since I can no longer take my anti-inflammatories.”

“You aren’t being negative,” she responded. “You are being realistic.”

The last two weeks have been a new chapter in life and I will likely continue to feel in the dark about what my future holds until I speak with my doctors later this week. I just made a grocery list of 5 items for my husband to purchase–and that activity has made me want to crawl back into bed. For 2 weeks I have showered and put on clean pajamas. Anything else has required energy I don’t have.

Your prayers during my time in the hospital covered me.

It was a scary process: ending up in ER to discover my blood count was 6.0 (less than half the normal red blood cell count). Bursting a vein while going through the CAT scan machine because I couldn’t unbend my deformed arm–and being yelled at by the technician, “Unbend your arm and don’t move!”

I heard from hospital staff for three days what an “event” it was that I broke out in a few layers of hives during the first of my 3 blood transfusions.

To be honest, I felt a bit numb through it all–I emotionally disconnected myself since I had no power. And yet, God used that un-feeling to give me peace. It was as if He said, “Yep, it is NOT going to be fun. But I’ve got it covered. Now, jump in that wheelchair to go get the ultrasound.”

I didn’t feel a sense of what the end result would be. I actually didn‘t think, “I will be fine.” I just knew that I was not in control of it–God was. I will confess, however, that I did spend some time pondering how if I died, people would find my house so messy at the moment. I hadn’t been able to pick up something off the kitchen counter in over a week.

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But having a sense of humor was easier to deal with than the other “what ifs.”

Thank you for being so understanding during the last two weeks while waiting for the devotionals to resume. Thanks for offering emails of encouragement, prayers, and sharing your stories. I have not responded to hardly any emails since I could barely move my fingers to type, but I did read every single one and asked God to watch over so many of you who are living such challenging lives right now.

A friend mentioned this verse to me yesterday. It is one of my favorites–about bold hope. I normally cling to it, proclaim it, live it! “Therefore, since we have such a hope, we are very bold” (2 Corinthians 3:12).

But . . . I don’t feel very bold at the moment.

Taking a risk–confidently and courageously–with hope that God will do something big, is too big of step for me today. I want to stay in my safe comfortable place of reasonable, realistic expectations.

I am not praying for miracles or success stories. I am too tired to go through the emotions of being disappointed again. Scripture tells us that hope will not disappoint. How can this be true? It is the difference between putting our hope in what God can do and who God is.

When I place my hope (bold or otherwise) in what I claim God can do for me, I will likely be disappointed. When I simply place my hope in who God is, I will never be disappointed, because He is who He says He is. He will never change. And part of His identity is my Father, always looking out for my best interests.

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A fresh layer of my testimony is going to come out of all of this–but I don’t know when.

I have bold hope because I am going to confidently and courageously believe–even though my belief may be risky–that God is going to do something–something good. Because God is good . . . all the time, right? The hard part is to avoid forcing Him to do it on my timeline (which would be SOON.)

My “and then” list

The last 9 months have held the challenges of a son who I began “emergency homeschooling” (yes, that’s a term), and then a husband who was laid off after 19 years (and still looking for work), and then this new blip on the timeline of my healthcare. And that is just what I am sharing publicly.

This latest event’s story is how at first I thought the fatigue was a side effect to medication . . . and then . . . everyone got scared about my blood count so gave me blood. . . and then I had a reaction to the blood . . . and then they did a procedure to find I had 3 ulcers, one that had bled for 8 days . . .  and then I had to go off my anti inflammatories . .  . and then (as of today) I found out my other major medication is not in production because there is a shortage of the “active ingredient.”

And the list goes on. (I could keep going but I will spare you.)

Because I know you have these lists too! People say bad things happen in 3s. Oh, if only our lists were only as long as 3, huh?! People with chronic illness are not complicated people–we just have complicated bodies. And it takes a lot of doctors and insurance red tape, and money, and patience to keep up with the lists of what is going wrong at the moment.

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And then God . . .

But oh, God finally will step in! At least, that is where my bold hope is to be placed. It doesn’t mean I will win the lottery or even be healed. It doesn’t mean everything will fall into place.

I know God still may throw some more and-then happenings into my life before I get to the end of the season when I can share “and then God . . . ” but for now, I am trying to gracefully accept the challenges He is allowing. Because I could add in “and then God” to each one of those, because I know He never left my side.

I could say today “… and then God allowed my insurance to deny all kinds of things, but thankfully when I called it was supposedly straightened out.” I am less inclined to add God into those parts because I don’t want to give Him a bad reputation of being the cause of it all. But rather, I can find His steady presence through it all.

In this case, the end of my story would be “and then God revealed His purpose and plan . . . ”

I know that these struggles will eventually give me a greater ability to understand the pain people like you go through–things like the fears of financial struggles, the consequences of long term chronic illness, the pain as a parent seeing your child suffer.

During my last breath I will be asking God to keep me around a little longer to share what He has taught me, to perhaps make someone else know they are not alone.

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This is why God lets us hurt. This is why He allows the pain.

Because through pain we grow closer to Him–if we choose to. And we increase our ability to look someone in the eye and say, “tell me your story. . . because I have been there and I know you must want to talk.”

This all sounds good, but I am far from perfect.

I am tired of not being able to walk from one room to another without having to sit down and rest. I would solike a cup of coffee, which I am not allowed to drink due to the acid of the beans. I am sick of the medical tests that pass my personal comfort zone. My headaches have caused me to resent every gardener in the neighborhood who seems to be cutting down trees with chainsaws and weed-wacking every piece of grass.

I have fought for four months to lose 16 pounds and I was just put back on a medication that caused me to gain 14 pounds in three months this winter. I am frustrated that my hands may never be without pain again since I can no longer take anti-inflammatories. And this scares me. . . a lot.

I am tired of saying “turn it down!” to my son. I am mad at myself that I have let it bother me that my best friend hasn’t called through any of this except to send one text message that said “praying!” last week. She wouldn’t have even know if I had died.

So you see? I have a loo-o-ong list of things I need to take to God on a daily basis and confess. I feel like I need to be in a constant state of apoligy, “I am sorry. I am so sorry for yelling, for being nit picky, for being resentful, for being ungrateful.”

I am so glad my God gives mercy.

What would we do without His mercy?

Why does He choose to use us when we are such sinners, kicking and screaming even as He tries to give us the education–through experiences–so we can follow His calling –the calling we so begged and prayed for?

If I ask for wisdom can I not expect He will give it to me, but it must be learned through personal struggles? If I ask for a testimony, can I not anticipate that I will have detours into the scary areas of life, so I have something to share and my words have both power and humbleness to talk of His glory

Without the fear or the uncontrollable circumstances, we would have no reason to proclaim we have bold hope. We would have no situation in which courage was necessary. If our life was easy, sharing about God’s goodness and our bold hope would be worthless. Who among us is encouraged by someone who has never suffered?

Thank you for sharing this fifteen minutes with me today, as I share my thoughts and what God is teaching me. I am so honored to be your friend, to have been entrusted with such a ministry as this, as a mentor. I will never meet all the needs, please everyone, or handle every situation with grace, but please know that I am seeking God through it all and entrusting my life, your life, and this ministry fully in His hands. God will take care of the details.

When we can surrender it over to Him, when we can speak faith into the absence of security, when we can life anticipating His works in our wrecks, we can live with bold hope. I have great anticipation of seeing what He will do with you and I . . . and Rest Ministries.”

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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.

-Victoria

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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.

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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.

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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.

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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.

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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.

February

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February is a month focused on love and romance. I challenge you this February to focus on loving yourself, caring for yourself, and loving your story. You are a beautiful individual with so much to offer the world. You have many talents. The things you are passionate about add to your uniqueness. Your passions are there for a reason. You are chronically ill but there is so much more to who you are as a person. You are going to make a huge impact in this world.  Take time to understand why and how much the people in your life love you. Take time to take care of yourself, do things you enjoy, and rest. I hope that this month you can see how wonderful, precious, and valuable you truly are. 

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Wishing you a month overflowing with beauty, blessings, and love. Take everything moment by moment, you have all you need to get through this moment. You are a strong, admirable, and beautiful individual. You are too amazing to put yourself down or speak negatively about yourself. Praying this month is pain free and that you have more then enough spoons. Sending warm hugs and prayers.

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Comment below something you love about yourself.

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 ❤

12 Days of POTYS Christmas

The Twelve Days of Christmas POTS Gave to Me:

12. Dizzy Spells

11. Aches and Pains

10. Tummy Aches

9. Tachycardia Episodes

8. Hours of Nausea

7. Migraines

6. Arrhythmia’s

5. Hours of Dehydration

4. Hours of Chills

3. Nights of insomnia

2. Palpitation

AND

1. Fainting Spell