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!

Faith

When you hear the word faith what comes to your mind? Please feel free to interact in the comments.

Faith is believing in things that cannot be seen but still choosing to trust. For Christians, faith is trusting in God's love for us even when we are unable to see His hands at work in our lives. We trust in His great love for us. He sent His only Son Jesus to bridge the separation sin caused between us: His people and Him. That divide is gone!

The Merriam Webster Dictionary defines faith as a firm belief in something for which there is no proof and as belief, trust in, and loyalty to God. 

A Biblical verse that helps describe Faith in a way we can grasp is found in Hebrews 11:1-3 NIV  "Now faith is confidence in what we hope for and assurance about what we do not see.  This is what the ancients were commended for. By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible."

Faith is standing firm in what we believe because we know that God always keeps His promises. He proclaimed everything into being: the land, sky, waters, trees, animals, and humans. None of that was visible until He created it. He provided manna to the Israelites. They couldn't see it until it appeared but they had faith He would deliver it. 

God had promised the world a Messiah. Many saw Him but some missed the boat because they couldn't see how a tiny babe, born in a manger, with a messed up lineage, could be the Savior. Because they expected a king or a warrior, they didn't see Jesus. They didn't have faith which included the Jewish religious leaders.

How sad to miss the greatest gift ever given to you because you couldn't trust that Jesus was Lord! I certainly don't want to miss out on God's love and grace. Because of this, I will choose to have faith in God's immense love for me and trust that even if I can't see His hands at work that I can trust that He is working all things out for my good.

"Let love and faithfulness never leave you; bind them around your neck, write them on the tablet of your heart." Proverbs 3:3

Prayer: Papa God, Thank you for being as real as the very air we breathe. When we are in a valley and struggling with what life is throwing at us, help us to trust that You are in charge and fighting our battles so that good things can be done in our lives and You can be glorified. Amen!

Hope

Hope What does it mean to you/what does it look like to you? (Feel free to comment below.)

When life seems overwhelming when the storms threaten to blow us down, when we feel we can't press on one more step, how do we persevere?

For me Hope means unwavering trust in my Papa God.  I call Him Papa because He is my heavenly Father and He deeply desires an intimate relationship with me.  

My Hope comes from God! I know He is with me always, will never forsake me, and will fight my battles for me. I trust in Him because He is God and worthy to be praised.

The Baker Biblical Dictionary defines Hope as to trust in, wait for, look for, or desire something or someone; or to expect something beneficial in the future. According to Bakers one of the Hebrew roots for Hope is to teach that the Lord is the hope of Israel. This meant/means that Israel's God is worthy of trust.

"Guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day lone." Psalm 25:5

"Be strong and take heart, all you who hope in the Lord." Psalm 31:24

Bakers Bible Dictionary states that the Greek word for Hope means to wait, to be patient, to endure. 

Wow! This definition is asking much more of us. In the Old Testament, we just had to trust. In the New Testament, we are asking for our faith to be acted upon.

God gives me physical, mental, and spiritual strength when I personally have nothing left to give. He holds me while I endure agonizing pain. I have certainly learned patience through my trials. In all that I go through, I can still say God is my Hope for He is always good!

May each one of you find true Hope in God as you learn to trust in Him especially as you wait and endure!

Dear Papa God, Thank you for being our Hope in a world of chaos. Continue to guide us as we navigate life. Be our strength and help us to endure and wait upon You. We thank you for Your goodness! Amen!

God Is Fighting for You

Today has been a rough day filled with severe pain. With six rare diseases and upcoming testing to confirm two additional ones, I have stopped trying to determine the cause. What I haven't stopped doing is trusting in Papa God. He is always faithful!

One of my "go to" verses that I recite when I'm feeling defeated or pressed in from every side is found in Exodus 14:14. It simply states, "The Lord will fight for you; you need only to be still." Wow! Not only is God already handling the situation and dousing the fiery arrows of the enemy but I just need to stay out of His way by being still, communing with Him, and trusting Him. Even on rough days like today, I trust that He is fighting for me. When I can't see His hands at work, I choose to trust in His love for me.

Exodus 14:14 was written as the Israelites were fleeing Egypt. Moses longed to comfort and encourage the people. Through this verse, he reminded them of the "wonderful deliverance" God had brought them. He also reminded them that God heard and provided during their time of need. (Matthew Henry Complete Commentary) Sometimes, we need to be reminded too. This morning, God encouraged me through two wonderful praise times and an excellent sermon from my former youth pastor and the brother of my heart. May each of us be encouraged so that we can encourage others!