Category: lupus

In the moment of heartache.

Worrying never got me anywhere before. So why should it now? There have been many times when I could have died, but I didn’t. There have been many times that I made plans, but they didn’t work out. And there were many times when I said, “to hell with it,” but things worked out anyway.
We think we have control, we desire to have control but our control is very limited. We can control our attitude and behavior, but we have far less control of outcomes. We have no control over what other people will do, what nature will do, what opportunities will be available to us.  We want what we want!
I think about all the craziness in my life right now with what seems like a trillion diseases that I can not control. The doctors don’t know what to do either. They finally have said the most heart-wrenching words anyone has to hear, “ we can’t do anything for you.” Sitting in the Mayo Jacksonville clinic, the place that was supposed to have the answers, the place I put hope into, within a years time had given up on me.
In the moment of heartache, and being lost for what to do next, the only thing that I knew was all I had was God. He can still heal me even if they can’t. He can ease the pain, he can mend the brokenness. It’s taken a bit to realize I can not worry about the next step and chase cures that aren’t there. Its taken a while to realize that I need to face each day one day at a time, one problem at a time. I do not look at my entire illness as a whole anymore, and I do not think about what if.

Allow today’s problems to be enough. Worrying about tomorrow won’t make it better. And you might ruin your last day worrying about a day that’s not going to come. We should consider each day as possibly our last because one day it will be. Ask yourself: If today was my last day, what are some things I would want to do?

Walk through the valley.

I have walked through some of the darkest years of my life alone, so I thought. I have felt broken physically, mentally and spiritually. I have been completely overwhelmed at times with life, and not knowing what direction to go that I was afraid to move. To think the next thought, I might fall apart.  I have thought, that I just can’t just make it through another day through with all of my illnesses more times that I want to admit.

But I hold it all together for myself, my husband, and more than anything for my kids. I know that I am not alone,God is always with me, he will never leave me and I can always turn to him. I know that someone is reading this right now saying they know how this feels. 

No matter where I have been in this journey, I have learned that all of those feelings are only temporary even if they come back after a while. God has always sent help my way.
It may have been an encouraging word from a nurse, or something I read, or sending someone my way to bring a word of grace, but he has always provided what I needed.

I have to look for God even in the smallest of things because even if it doesn’t appear that anything is changing I know that God is always doing something. I know the closer that I walk with God, the more Satan will try to knock me down but I have to stand tall, and be strong in my faith and know where my help comes from no matter the challenge I am facing.  

What Satan doesn’t realize is the very tool that he thought would make me turn on God has brought me even closer to my heavenly Father. The sickness and the hardships of my life has made me put total dependency on God, instead of myself or someone else. Satan doesn’t want me to rise above my problems but I choose to rise above anyway even if it will take a little more effort on my part. 

David wrote in Psalms 23,” Even though I walk through the valley of the shadow of death, I will fear no evil for you are with me.”

I can see a light.

I have walked through some of the darkest years of my life alone, so I thought. I have experienced broken-ness and I have been overwhelmed at times, afraid to move because if I dare, everything might collapse around me. I have feared to think the next thought, because I might not be able to hold it together.  I have thought more times that I want to admit, that I just can’t make it through another day. And yet, I still hold it all together because I am strong, I am a child of God, because I have a purpose.  I know that someone is reading this right now saying and I can identify with this heaviness. 

Here’s the thing, no matter where I have been on my journey, I have learned that all of those feelings are temporary, even if they come back after a while, they still go away.

God has always sent help my way. 
It may have been an encouraging word from a nurse, or something I read, or sending someone my way to bring a word of grace, but he has always provided what I needed when I needed it.

I just have to look for God, even in the smallest of things. He is always doing something.

God never leaves us even when the burden is way to heavy. Trust in this that he is with you, just as he has been with me.

David wrote in Psalms 23,” Even though I walk through the valley of the shadow of death, I will fear no evil for you are with me.”

A great tip to improve Brain Fog. 

I wanted to take a moment and discuss Brain Fog. I have Lupus, and Fibromyalgia and lately symptoms of brain fog have affected me greatly. It’s has made it extremely difficult to think in complete thoughts, I forget what I am saying in mid-sentence, I forget descriptive words, dates, the days of the week, etc. I was getting extremely confused more and more and to me it was really frustrating. I was feeling like I was stuck inside my own head. 

My Rhuematologist suggested a supplement of DHEA last visit. She said, “there were studies that were proven that DHEA was used to treat Lupus and brain fog.” 

DHEA is a steroid hormone produced by the body’s adrenal glands that has anti-inflammatory effects.

I was desperate to think straight. Ordinarly, I am not a believer in quick fixes, but it was an over-the-counter supplement that my doctor said she even tried, so why not, I tried it and I am glad I did. Within a week, I could tell a difference in the Brain Fog. She warned me that she will want to increase the dosage but right now a little relief was very welcomed. 

So if you are a Lupus/Fibromyalgia/Chronic Fatigue/ or you just suffer from Brain Fog it’s definitely worth a talk with your doctor to see if this is good for you. 

Rise!

Rise!

What if God wants to use you and what you are going through to reach someone else? What if He wants to heal you so that your story can heal someone else? I know that I often see myself as insignificant but God does not see me that way! He sees me and you differently than how we see ourselves. He sees us stronger than we give ourselves credit for, he sees us as victorious, significant, and he wants for us to live the abundant life that he prepared for us before we were even born.

We were made to RISE above! Whatever you are facing today, it does not define who you are. Maybe you have an illness, depression, addiction, abuse, anxiety, or past regrets, whatever it is God has a plan. Be still and you will find it.

 

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.


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


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.


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.

 

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.



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.



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.

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.



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. 



 

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.