Surrounded ( Fight my battles) Michael W.Smith

 

This song seemed appropriate for my mood today. Enjoy.

Suffering doesn’t always have to mean hopeless.

When you are suffering it’s easy to slip into a state of hopelessness.

I live with chronic illness, my major organs are being attacked one of them is my heart, that means unless God heals me, I am not going to get any better. That also means, each day I have to be at peace with where I am at today, at this very moment. You can be angry about the past or your present right now, that’s entirely up to you. I tend not to give the power back over to the people or my illness that have already ruined things once.

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The way I see it is; that I can live life one of two ways;

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One; I was born into an unfair world, I suffered and I didn’t deserve how I got treated. I get knocked down too much and I don’t think life is fair so I am not going to even try. Life just sucks…

Two; I can use my circumstances and become stronger because of them. Every time life knocks me down, I get back up again using it as a spring-board. I focus on the good things in life and enjoy every moment in life that I do have.

I choose to live my life exactly like the second choice. I have no time for negativity in my mind because my time is so precious and limited.

I refuse to allow myself to think about how unfair my illness is.  I know the consequences in the end, but I do not dwell on them. I am making my life worthwhile anyway though, no matter the trials. 

Make your life count for something no matter what is going on in your life. If you are sick, count your blessings still.

I would rather live out the rest of my days being grateful for all the things I  do have, rather than be upset, live in regret, waste precious time, for the things I didn’t do or don’t have.

Day 4..How does Autoimmune affect our family.

My husband hangs in there. Working two jobs and helping me to do day to day things. We have two kids and even that is a challenge for me at times, he has to pick up a lot of the slack. My health has declined over the last four years and yet he is still here. Out of anybody my illness affects him the most. This is what he had to say.

Before Tabitha was diagnosed with LUPUS, we both worked and were able to provide our kids with most of their needs on a daily basis. Then on that day in April of 2014 when we went to the ER and received the diagnosis that she had a DVT on her right thigh, things started to get turned end over end. Within a few days we were told that she had antiphospholipid syndrome and LUPUS. It seemed that every time we went to a doctor we were told that she had another problem. She lost her job and we were starting to wonder what we would do. I got a second job and we were blessed with me having two employers who are flexible enough that I can be at her doctor’s appointments to support her and help her.

It has been a major adjustment for all of us in the last four years. I spend a lot of my time at work worrying about her and trying to coordinate all of her appointments with my work calendar and trying to keep enough leave time to make sure I can get her to them. I try to do everything I can to help her get through each day. I help in setting up her meds for her and making sure she gets them every day.

I try to put her needs before mine because she needs help with a lot of day to day activities. I believe we will find something one day that will improve her quality of life to a level that she will not be in so much pain and able to function better, but until then I will continue to do what I can to help her. She deserves that from me and I want to give it to her.

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.

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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.

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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.

 

Previous post includes a letter from my Dad, my daughter, and my best friend.

Day 3…How does Auto immune affect our family.

This is my best friend and her perspective. When you have chronic illness, it’s hard to keep friends close because you constantly have to cancel plans and she does get that from me. I have tried my best to educate everyone in my life what Lupus is. I believe that has helped my relationships.

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I have known Tabitha most of my life and she is one of the strongest people that I know. She can handle just about anything that is thrown her way. When she told me she was diagnosed with Lupus, I had no idea what that really meant. It took some learning on my part to understand how this can really impact a

person’s life and change everything that they know. As I said before, Tabitha is one of the strongest people I know, if not the strongest. I am always worrying about her even when I don’t say it; that is just who I am as a person. When I do ask how she is, she quickly tries to comfort me with a “I’m fine”, “things

are great”, but I can see hurt in her eyes, or hear the pain in her voice that is caused by this disease. I wish that everyday I could make the pain go away or make it my own, that way she would no longer suffer. I worry for her family too and wish they could have their mom back in full health that she use to be. She is loved beyond words and there is nothing I wouldn’t do for her, even write this up with

the little sleep I have had, working over 12 hours a day, going out 10 days straight. I Love you Tabitha.

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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.

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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.

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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.

See previous post for letters from other family.

Let me let you in on the seriousness of my Autoimmune Disease story. Let’s get real for a minute.

 Let’s get real for a minute. 

I think at times I downplay the seriousness of my autoimmune diseases and I don’t allow others in on the reality of my story. 

My major organs are being attacked. I have heart blockages in my right bundle branch and I have the beginnings of kidney issues due to lupus. My digestive system doesn’t work as at it should, for my digestive system to break down foods it takes three times as long as a normal system.

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I have over ten autoimmune diseases all of them have symptoms of their own. Lupus, Mixed Connective Tissue Disease, Lupus Nuephritis, Gastroparesis Nuerocardiogenic syncope,Sjogens, Autonomic dysfuction, Esophageal dysfuction, Arthritis, Antiphospholipid Syndrome, Autoimmune dysautonomia, Raynaud’s phenomenon, Myositis, chronic pain syndrome, and fibromyalgia. I am sure I have forgotten to list something because I also suffer from short term memory loss. 

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I have to take a hand full of medication in the morning and at night, where before I became sick getting me to take Tylenol was difficult. 

I am on a healthy eating plan because I have serious digestive issues. I eat soft foods, I do not eat much more than a cup full of food at a meal. I do not eat sugar, processed foods, fried foods, gluten or bread. 

I have people advising me continuously about special diets, gluten free diets, vitamin rich diets and more as if these would cure things in an instant. I have a list of foods that my doctors tell me I cannot eat but I continue to fight every single day to stay alive and to stay healthy.

I just turned 39 years old on Friday and I plan on spreading awareness of the horrible autoimmune diseases that attack millions of people so that one day there might be a cure. 

My desire is to make the public aware of autoimmune disease and to reach as many people as I can for Jesus Christ. God has given me peace about what is happening in my body and I want everyone else to find peace as well. I remain positive because the only one that can heal me is God. He is all I have.

 

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.”

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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.

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---

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.

 

Fear of family and friends leaving when you have Autoimmune Disease.

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.

 

What is autoimmune disease to me?

What is autoimmune disease? The medical definition is as follows; An illness that occurs when the body tissues are attacked by its own immune system. 

However, I have my own thoughts on what autoimmune disease means to me.

For me it’s not knowing what comes next. My good days are a normal person’s worst day. It’s the daily renewing of my mind to fight against depression, aggravation, and anger. It’s a daily awareness of how I feel, things I do, and how much I do.  It’s a daily fight for my life. 

 

Chronic illness is more than just a disease that makes my body hurt and an illness that won’t ever go away. It’s mentally draining, it attacks me to my core. Some of my biggest fears in life have had to be confronted in order to survive this illness. There isn’t room for wasting precious energy on things that I can’t control.

Facing a chronic illness is not easy, it’s scary and full of unknowns and unanswered questions. It can be lonely at times, even if you do have a full circle of supporters. I often see that other people say that no one understands them, and that is right! No one can possibly understand what you are going through except for yourself. It is your journey. However, we can’t get caught up in how much others do or do not understand what we are going through when we really can’t fully understand it ourselves. 

If you are a caretaker of someone with Autoimmune disease, the biggest gift you can give to your loved one is to say I believe you and listen. Understand that this illness is beyond what you can see, physically and psychologically. 

If you are one of my fellow spoonies, find a support system of others that you can gather information from and that can relate. If you need a support buddy, message me!

What is autoimmune disease to you? 

 

 

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