Tag: lupus

Day 2…How does Autoimmune Disease affect our family? A note from my 14 year old daughter.

Being the daughter of a mom that has lupus can be tough sometimes. I have struggled with anxiety since the very beginning. Several times I would be at school and wonder, “Will my mom be okay?.”  It seems like we all have a jump scare at least once a year. I always sit in my bed every night and pray to God about
everything but my mom is always at least one of the topics. I used to be afraid to tell my mom about my personal problems because I would be afraid that it would stress her out even more than she already was. I felt like I had a voice in the back of my head telling me not to worry but I didn’t listen to it. That was one of my big mistakes I made through this journey. Ever since 5th grade, I went through anxiety
thinking I may come home to something bad happening.
If I could give advice to another daughter that has a parent in this situation, I would suggest not to worry because God has a plan for all of us. Usually when these things happen it’s to teach us a lesson. Personally, for me it has taught me hope. While writing this I
had to think about what hope actually was. When I searched what “hope” meant it said, “a feeling of trust”. I learned to trust God with my mom. Every now and then I still think, “Is my mom going to be okay?”, but I still say I need to trust God.
Romans 5:5 says, “Hope does not disappoint us, because God has poured
out his love into our hearts by the Holy Spirit, whom he has given us.”





 

In case you missed it……

Living with many Autoimmune Diseases is difficult enough. I have to keep on living a life, being a mother and a wife. I have to deal with my pain and I have to keep a handle on my emotions.


Over the next few days I will share some of my closest family and friends writings on how my illness affects them. I asked each of them to write how my illness affects them. The first one will be from my Father, the second one will be from my 14 year old daughter and I will continue for a few days with a few more people. 

The reason I am doing this is because I want to bring awareness that our families and friends are deeply affected.



When we are physically  hurting, they are emotionally hurting for us. Sometimes it’s hard to express that you love someone when it hurts so bad.

How does living with Autoimmune Disease affect our families?

Living with many Autoimmune Diseases is difficult enough. I have to keep on living a life, being a mother and a wife. I have to deal with my pain and I have to keep a handle on my emotions.


Over the next few days I will share some of my closest family and friends writings on how my illness affects them. I asked each of them to write how my illness affects them. The first one will be from my Father, the second one will be from my 14 year old daughter and I will continue for a few days with a few more people. 

The reason I am doing this is because I want to bring awareness that our families and friends are deeply affected.



When we are physically  hurting, they are emotionally hurting for us. Sometimes it’s hard to express that you love someone when it hurts so bad.

My first letter will be from the man that I call my Spiritual Father but by all rights and purposes he is my Dad.

Actually I feel more like a father to Tabitha than just a spiritual father. I hurt when she hurts, I’m sad when she is sad, I empathize when I can do nothing but offer words of comfort. I have walked a hard road with Tabitha for nine years, most of those years were dealing with the past atrocities that she has suffered. Those former years, before I knew her, have made me angry and hurt at the people that have hurt her. I can do nothing about those people but I can be there for Tabitha. Now, as almost insult to injury, she has been plagued with a debilitating disease. I’m not angry with God because of her life of torment and pain, He didn’t cause them, but He has lifted her up through them and has given her hope and a platform to help and encourage others. I never ask God why this is happening to Tabitha, in fact I think this is Satan’s way of trying to silence her, but he has failed to do that, her voice of hope and encouragement is stronger than ever. The sicker she gets, the more I encourage and the more I ask God to heal and protect her from Satan’s talons and I will do that until the day God calls me home.
I tell Tabitha that God is as all we have.  This is a fallen world and we, as the human race, have chosen to do our own thing, but God still stands and waits for His children to call out to Him, to call His name, to ask for help, healing and mercy and He has done just that for Tabitha. The help and healing isn’t manifested in the way we would always want, but still God continues to bring help and healing in new ways that is overwhelming victories. We see that God is doing greater things than just stopping the pain and sickness, He has created miracles that Tabitha and I rehearse continually to keep them fresh in our minds and hearts. That doesn’t mean God is not touched with our infirmities, He hates for His children to suffer, but suffering is a part of this world. One day this will all be over and we will go to a place of bliss forever. For now, we will stand, we will fight the enemy and we will continue to believe that God has a plan. Our faith and trust are in God. God has been my source of strength for longer than Tabitha has been alive, now I will be her source of strength. I will stand with her, hold her up when I need to, pray for her, encourage her, listen to her, cry with her and continue to love her just like the Father has loved me. In fact, that is how I have known how to be a father to Tabitha, God has been a great Father to me.

 

What really constitutes being a Father?

I was born in the most obscure circumstances possible. My biological father was abusive in every way possible from the time I was just a toddler until I was nine-years-old. My parents divorced at that time and for a short time my three siblings and I  lived with my mother.
One day, without any forewarning  my siblings and I were taken away from our mother and placed in foster care. Although we were safe from physical abuse in our foster home, mental abuse was still the order. I learned at an early age how to look after myself and to protect my brother and two sisters. For the most part, I was the father and the mother to my siblings. Still, even in the midst of an abusive life, God still found a way into my life and he placed different people in my path even for short times.
Even though my life had been filled with abuse, neglect, and abandonment, God was still a part of my life. We were taken to church, we were taught about Jesus and I managed to find people that seemed to care about me and my siblings despite our plight in life. I knew who God was but I did not have a relationship
with Him. When people would say that God was my Father, I could not relate, every father I had known to this point was a bitter
disappointment.
I met my husband when I was just a eighteen. After a very short courtship we would become engaged and married just a short time
later. One of the defining factors of my relationship with my husband was that he went to church with his parents. I too wanted
to go to church and so I attended church with my husband and his parents.
One day a missionary came to our church and talked about Guatemala. I connected with the pictures of the starving dirty poor children and I wanted to go help. This mission trip would be a life changing experience for me.
At this time in my life I was twenty-nine years old, had two small children but I was still not over my past and the abuse that I had
suffered, but I was determined to keep moving, that was the only thing I knew, just keep putting one foot in front of the other.
On the mission trip I became acquainted with the Associate Pastor of the church.  Back home, at the church for an entire year he had been relentless to always go out of his way to speak to me and my husband and he would call us by name. However, I was not about to let anyone in my life, I had a hedge of protection around me, and I would not give him the time of day.
On the mission trip He spent time talking to me, encouraging me and even pushing me to become more connected and to break out of my shell.
When we came back home from the mission trip, I began to open up to the Associate Pastor. He proved to me to be trustworthy. He was patient, he taught me the word of God, he prayed for me over and over again. One day I realized, “maybe this is what a dad really is?”
I wish time would allow for me to tell of all that I have learned from this man, but one thing that stands above the rest is his unconditional love. No matter how stubborn I was, no matter how angry I was, he still loved and cared for me and kept leading me to Jesus.
We have built a trusting relationship for nine years and he has taught me everything a real father should have. This man is now my spiritual father, because of Him I can call God my Father for the first time and mean it because now I understand what a father really is.
I believe that spiritual fathers and spiritual mothers are essential in the church for repairing damage that has been done to young Christians. For me, it was the only tangible way to learn the basics of a relationship without expectations. Because of one person willing to take the time to step out in faith and keep trying even though it was difficult, I was able to know unconditional love and give my life willingly over to God. #unconditionallove #survivor #metoo

My daughter playing At the Cross by Chris Tomlin.

I am so proud of this girl right here. Not only does she play her flute beautifully but she is a great daughter.

Please Share This.

 

Hope.

 

While the entire world is recovering from celebrating the start of a New Year, those of us who have an illness are most likely inside today, still recovering from last month’s holidays.

Today, reflect on how far you have come. You made it!! Know that you are strong, courageous, and you are a winner.

As long as we are in this together, there is always hope!

Take time to celebrate the small victories.

 

 

Monday morning pick me up. ( Good News!)

Good News!
Luke 2: 10-11
“And the angel said to them, “Fear not, for behold, I bring you good news of great joy that will be for all the people. For unto you is born this day in the city of David a Savior, who is Christ the Lord.”
I have good news for you today. Today, we celebrate the birth of the Savior but that is just the beginning, this Savior is available to you and me every day. He has the gift of life, He has the power to defend, He is the one that holds our hand and sees us through every situation and predicament that we face today. He will comfort when we are sad, He will rejoice with us when we rejoice. He is the perfect gift, the perfect companion, a perfect Savior.

Merry Christmas!

I wanted to take the time to wish all of my followers, readers, and anyone that sees my posts a Merry Christmas! 

My fellow Spoonies: remember to conserve your spoons,( energy) , do more sitting than doing, take advantage of all the family in your house this year and allow them to help. Your body will thank you on Tuesday! 

An encouraging letter to everyone who has Autoimmune disease.

For those in the world who suffer with the debilitating disease such as Lupus, I pray for strength, for mercy, for healing. Having someone so close to me that suffers with this disease is not easy. Day after day, she suffers what seems to be alone, although I know she is never alone, God is with her, I believe in her, and I pray for her continually.  This disease has been harder than so many diseases because you can’t see the effects of this disease, she looks like the person I have known for almost nine years, but silently she suffers immensely. So, I stand by her, I listen, I pray and I try to encourage her every day.
For the community of those who are suffering with Lupus and Connective Tissue Disorder, I pray for a cure, I pray for God’s healing and I want to say to you, I stand in the gap with you. I pray that the people in your life will not show pity but strength, love and encouragement. I pray that your spouses will get a clue and be supportive, understand what you are going through, be caring and always be a shoulder to lean on. I pray that your children will be a helping hand, and that they will inspire you and take some of the weight off your shoulders by helping out the best they possibly can.
I offer this word of encouragement to so many that suffer with these autoimmune diseases, stand with each other, encourage one another. Amos 3: 3 in the Bible says, “Can two people walk together without agreeing on a direction? Coming together and supporting one another and offer sound advice is a key component of healing. If you have found some practical things that have helped you, share it. If you have learned a few things from reading and studying these diseases that will help someone else spread the wealth. If your doctor has been successful in helping in any way, let people know. There is strength in numbers. Lastly, “God has not given us the spirit of fear but of power, love and a sound mind.” (2 Timothy 1: 7 NKJV). Power to rise above, love is the strongest medicine, and a sound mind is for those dark hours when things seem hopeless or when someone else needs a word to keep them going. Proverbs 16: 24 says, “Gracious words are like a honeycomb, sweetness to the soul and health to the body.”
Blessings,
Pastor Johnie

 

Short encourgement for today.

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#health #chronicillness # remainstrong

Autopilot.

Most of us go through our days on autopilot, we aren’t really living, we simply exist. For most of us, we can’t wait for Friday to get here, and then we spend our weekends wishing Monday would delay coming.
 
For others, they rush around pressing time, they simply cannot wait for the next hour to get here, but life is way too short to rush. Life goes by in the blink of an eye and before they know it, they are looking back, wondering what happened to life. What’s worse, pushing time has sealed their fate, where has it taken them, how did they get there so fast, what did rushing buy them. 
 
Today, I choose to slow down and enjoy life.Despite all the illnesses and diseases that I have, I still have presence of mind. I can still live my life, I can still be thankful, I can still enjoy the simple pleasures even if life has dealt me a bad hand. Those things that I truly live for, God, family, friends, community, and even contact with people like you, it is those things that will pull me through the hard times. Though some may not agree, I am blessed and have been blessed beyond measure. Just because I am ill, that will not steal my joy or the memories of what God has done for me and my family.
Here is what I propose; today, right now, slow down, take some time to live your life, enjoy the cool weather, have a picnic with your kids, have some friends over for a BBQ, hang out after dark and see how clear the stars are in the winter. Be thankful for the blessings that you have, be thankful for the blessings of the past and don’t worry about the things that you don’t have or the things you did not do. Don’t let life pass you by and don’t just simply exist, life is too short for that. Live your life to the best of your ability.