Faith During Hardship

Faith is believing in things you cannot see. Two weeks ago, we talked about hope. To have hope, you you must have faith. 

Mom and I have the saying: when you can't see God's hands at work, have faith and trust that God's love for you is at work to bring you His best in His time to receive all of the glory, praise and honor for what He has done.

Cold temperatures and rainy days wreak havoc on my body. On these days, I typically experience severe muscle cramps that leave behind a knot that stays with me long after the spasm has ended. Spasms have caused dislocations especially in my fingers. Now, they cause contractures which means I cannot move the fingers of my hands. I am the tin Man in need of oil. These are the days that I must hold on to my faith the most. 

As we celebrate the third week of Advent, help us to believe and have faith in God's deep, unconditional love for us! If you are struggling with faith especially at this time of year, please feel free to reach out to me and we can chat privately and I will be able to pray with you.

Anticipation of Emmanuel and Trusting

I woke up yesterday with the worst pain that I have experienced yet from my Stiff Persons Syndrome. I'll admit that at first I said "Really God?" In the pain, songs flooded my heart and as I began to sing praises to God my heart knew that God is with me always! 

Yesterday, mom and I started our Advent devotional The Marvel and Miracle of Advent by Lisa Harper & Christine Caine, which I highly recommend. 

I love how God orchestrates everything! He used the study to remind me of two things: that He is always with me and that there is always hope. 

The first Advent candle symbolizes hope. When things are at their worst that is when we must hope and trust the most. Why hope? Because God is all about hope, the hope of Emmanuel which means God with us. 

Why trust? Because, no matter where I am in life nor what I'm going through I am never alone. Papa God is always with me! He was already fighting my battle for me yesterday. I had an appointment with my neuromuscular specialist who actually listened to what I had to say and prescribed a new medication that will help attack the spasms from a new way. 

Yesterday, my needs were met rather quickly. Life doesn't always happen that way. I know that the neuromuscular autoimmune diseases that I have can never be cured and the symptoms will continue to worsen. I also know that God has a plan which is why I must trust!

Hope and trust are a lifelong choice: we can either choose to embrace it or we can choose to reject it. I choose to believe in hope, in God, in His love for me, in His faithfulness and then the fact that He is always with me which means I am choosing to trust! 

The Bible tells us that we will not have an easy life. This is where we anticipate, which is what the Advent season is all about: anticipating the arrival of someone important, and trust that God is with us and that one day we will bask in His glory and love because that someone we anticipate is Papa God's son Jesus. He did come to us and walk with us which continues to this day!

Living with five rare diseases and a body that never seems to want to listen to what my brain is telling it to do can be extremely frustrating. I am going to enter this season of anticipation by being in the presence of God and trusting in the hope that Emmanuel, God with us, will do in my life. I encourage you to join me in trusting and hoping in who God is.

#marvelmiracleadvent #advent #HopeInChrist #stiffpersonsyndrome  #raredisease

Spiritual Warfare

One of the phrases you may have heard me use is “Armor Up.” Why is it important to “Armor Up?” I can tell you firsthand that spiritual warfare is real. 

“Finally, be strong in the Lord and in his mighty power. Put on the full armor of God, so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground… “ Ephesians 6:10-13

Recently, I was under attack by the enemy: he was scheming, throwing fiery arrows at me, making me doubt, using everything in his wheelhouse to chip away at my faith in God. Blessedly, God is always faithful!

“I will sing of the Lord’s great love forever; with my mouth I will make your faithfulness known through all generations.

I will declare that your love stands firm forever, that you have established your faithfulness in heaven itself.” Psalms 89:1-2

I was never alone in this battle. God would remind me of various scriptures to bolster my 

strength:

“This calls for patient endurance on the part of the people of God who keep his commands and remain faithful to Jesus.” Revelation 14:12

“The Lord will fight for you; you need only to be still.” Exodus 14:14

“I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.” Psalm 40:1-2

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

These verses are great reminders of why we must hide the word of God in our hearts. For when the enemy attacks, His Word will be in us and see us through the battles and difficult times.

God sent special people into my life to pray over and to help me. 

“Carry each other’s burdens, and in this way you will fulfill the law of Christ.” Galatians 6:2

We, as Christians, need to rely on God and on one another. We do not have to face our battles alone! 

“Therefore confess your sins [your battles] to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.” James 5:16

“Submit yourselves, then, to God. Resist the devil, and he will flee from you.” James 4:7

I am grateful and blessed to say the devil has fled. God deserves all of the praise and glory for it is his Holy Spirit working in me and through me that got me through this battle. Furthermore, I know that this battle has been another chapter in my story that will bring God glory!

Letting My Stripes Show

My Rare Disease journey likely started as a child but it wouldn't be discovered until my thirties. I'm now diagnosed with seven rare diseases: Common Variable Immune Deficiency, Stiff Person Syndrome, Dermatomyositis, Gastroparesis, Addison's Disease, Idiopathic Intracranial Hypertension, and Inverse Psoriasis. 

As a child, I often was ill with sore throats, sinus infections, stomach viruses, and the flu. If it was passing around, I was certain to get it. When I became older and was being tested for rare diseases, this is when I discovered the Common Variable Immune Deficiency. I was wearing masks and hand sanitizer before they were the new fad.

My most rare disease is Stiff Person Syndrome. This disease affects one in every one million people. This is a Rare Neuromuscular Autoimmune Disease. With this disease, your muscles get very rigid or hard. Think the worst Charley horse but nothing you can do to ease it. I've also encountered intense muscle spasms which is not uncommon.

The first Rare Disease I was actually diagnosed with was Dermatomyositis. This is a Rare Neuromuscular Autoimmune Disease. This disease causes muscle atrophy (shrinkage) and weakness. This disease has caused deep dimples in my legs where my muscles have receded.

Gastroparesis literally means a paralyzed stomach. I have to eat a special diet. Fresh fruits and vegetables as well as whole grains and nuts. I know it is odd yet it has helped me. If I eat the foods I shouldn't, I get very nauseated and constipated. I have stomach pain. It is miserable.

Addison’s Disease or Primary Adrenal Insufficiency causes muscle weakness, extreme fatigue, and increased thirst. 

The joke in our house is that Idiopathic Intracranial Hypertension means that the idiotic pathetic doctors couldn't find a cause for the increased pressure in my brain space and spinal column. Thankfully, they’ve been able to manage it with medication.

With Inverse Psoriasis, the Autoimmune Disease causes extra skin to grow and a red rash to appear. It can lead to yeast infections as well as skin infections.

My journey could have been frustrating, but I was a Social Worker before becoming disabled. Therefore, I was able to advocate for myself. I had one doctor write in his notes that my diagnosis was due to psychogenesis which essentially meant it was all in my mind. I showed a seasoned doctor the report. When I went back to the note at a later date, the word psychogenesis had been removed. 

The myriad of tests. The differing doctor views. It can be overwhelming, Keep fighting, Warrior! 

Learn everything you can about your Rare Disease. Make Lists of questions for your doctors. Don’t let them put you down. Remember, they work for you! Find support groups locally or online. Ask questions or quietly listen. Think about what you can still do and consider yourself blessed.

I may use a walker at home with someone assisting me. When I leave the house, I must use a wheelchair. I don't allow it to get me down. I count my blessings. Is it sunny outside? Blessing! I stay in touch with people online and by phone. Blessing!

We are rare but we are STRONG! Our stripes make us unique. I wear my stripes loud and proud for Rare Disease Day.

#ShowYourStripes

What This Seasons Is Teaching Me

I find myself in a season I've never been in before. I must rely on someone else for almost everything. Oh, how very humbling!

If I can rely on others, then why not be vulnerable with my Papa God. So, I rest in His presence soaking up words of praise songs that move my soul and drawl me closer to Him.

I dive deep into His word not to be a scholar but to build a profound relationship with my Papa God. 

I humble myself to cover my brothers and sisters in prayer because there is power in prayer. This is an action of love to be an intercessor.

I tell you this to give God the glory. He wants to work in and through you, too. Are you willing to have an open heart? Are you willing to be humble? Will you make time to know Him better by delving in His Word, the ONLY authority, the Bible? Will you stand in the gap and pray for those around you?

In honesty, you will get scars along the journey but they will be worth it! They will make you stronger. They will draw you closer to Papa God because He will walk ever step of the journey with you! He is faithful like that!

Joy

 

This has been a difficult year for me. I started fighting an infection on Father's Day which they treated with tons of antibiotics. The antibiotics caused a severe fungal infection but never cleared the bacterial infection. Six months later and I am still fighting these infections. How does one not lose joy in the midst of the suffering? Living in pain daily, losing independence, struggling with mobility? Where is there joy in that? 

God's Word states, "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance." James 1:2-3

Our circumstances do not control our joy. My joy is not found in my ability to walk or have a day without pain. Those are my circumstances. Joy is found in our firm belief and intimate relationship with God. When I am spending time with God, my heart knows true joy. Joy is not an emotion. Joy is a gift from God: a fruit of the Spirit (Galatians 5:22), 

"…but I [Jesus] will see you [The Disciples] again and you will rejoice, and no one will take away your joy." John 16:22 When I read this verse of scripture the lyrics to Old Church Choir by Zach Williams sweep through my heart. I have been saved by God's grace. Because God chose me, I will have joy indescribable. Though life circumstances and a persistent enemy will try to quelch my joy, they will not succeed.

Jesus humbled Himself and came to earth as a vulnerable baby. He was tempted by satan. He was betrayed. He faced an agonizing and painful death. He did all of this so that we might know joy everlasting that no words can do justice. 

If you find yourself in a tough season, remember that you are not alone my friend. God is with you always and He won't allow anything to steal your joy. Please feel free to share your prayer requests and praises in the comments section. 

Prayer:

Papa God, Thank You for Your never ending presence in our lives. Thank You for the gift of Your indescribable, indestructible joy. No matter what valley we are wandering through like a lost sheep nor what mountain we're struggling to climb, we trust that You are not only with us but will use it to grow our joy. Amen!