Building bridges one family at a time….

He Steady’s My Heart: Living with Lupus

The day it all began. 2011

I don’t even know how it started. I felt pain, constant pain. They kept saying that with major surgery it would take me months to recuperate.  It is 2017 and I am still recovering, learning to live my life as normal as normal is to me. Saturdays is chemo day. I start my morning with chemo and it takes 2 days to recoup from that weekend discomfort.

At the time of the surgery I had to get used to a stent residing in me for an unknown amount of time. See I had reconstructive surgery on my insides. My bladder is no longer where it should be. X-rays will not be able to find it. I have a piece of my right ureter left. My right kidney throws temper tantrums weekly. Constant infections. Things still work, but they don’t work efficiently with my schedule. Although I battle daily, and I battle hard, my body has been working since 2011 overcoming everyday in its’ own unique journey. These days I have had to learn a new normal and everyday I encounter a new journey of life that allows me to be a professional therapist, and  then at the end of my day I give myself permission to face the discomfort of living with a chronic disease. I chose not to live in denial. I learned this part the hard way.  It does not define me. I am not Lupus. Lupus is a part of me. RA is it’s best friend and Raynaud’s is the baby of the two all encompassing a day in my story.  The back has its own injuries. When I grew a 20 lb. tumor, I was mortified, shocked yet I knew something was wrong. All my life I have struggled with my weight, so when a 20 lb. tumor accommodates itself to fit along my spine, Yet I kept growing, thinking I was gaining weight so I stopped eating, yet I still looked the same. I was a graduate student and I thought I was tired because of the life of a graduate student, interning, working at 2 internship sites and having a family plus homeschooling 3 kids.

I was at church one Sunday that year of 2011 and I remember praying that if there was something wrong with me that God would reveal it and bring it to the light. It was the blackouts at HEB and having to hold on to my cart, the sudden memory loss, the inability to stand some days and then it was the reality that I was not eating and I was growing. There were a few other things but it was my conversation with God one day that led me to seek medical help. He had already made it clear to me that something was inside of my body that didn’t belong there.  I was to trust Him in all of it. I had no medical insurance. It was certainly bold faith that I held on to as I persevered on this journey of medical treatment. Doors closed daily! I had to first find a doctor. That was not as easy as looking in the yellow pages. Then I had to apply for insurance. I kept getting denied. Finally as a last resort, I looked into Cigna. They took my application over the phone, took my credit card and said it would need to go to underwriting and if all was okay my insurance would take effect on January 15th of 2012. Well in January when I spoke with God for two weeks straight as I drove to Victoria completing my LPC Internship, He reassured me that He would take care of everything. He also let me know that I needed to prepare for the hardest journey I would ever experience. Never did I imagine I would sit here today writing about the long term impacts this has had on my story, my life journey, my motivation to persevere on a daily basis.

It was on a Monday January 2nd that I knew I had Cancer. He told me. He prepared me. I cried, grieved and trusted Him. I told my husband about what I knew and what God had told me. I prepared him. I prepared my kids. For those two weeks we were still, and we knew that He was Lord. That scripture (Psalm 46:10) resounded in my head along with (Philippians 4:13) knowing that I could do all things through Him who giveth me my strength. Trust and faith are where I lived for a couple of weeks. On Sunday January 1st, I was buying food for the Marrieds ministry where my husband and I served. At HEB, that morning before marrieds I had a black out. My chest was pounding and I was not coherent for a moment. For a brief moment I didn’t know who I was. David and JD helped me manage that morning. When we got to Marrieds, it happened again. I was talking with my Pastor and I had another episode. He was the first person we told about my illness. We received prayer that morning. On Sunday night, it got worse. My body just continued to struggle. David reached out to his family for prayer. David’s sister works for a doctor in Alice and she worked it out so that he could see me on Tuesday January 17th two days after my insurance would take effect if they would accept me.  I went to work the next day, drove to Victoria as an LPCI and I managed to get through my work day. I prayed that God would give me strength to continue and to persevere. He was with me through it all. Crying out to the Lord…. I did that every day! On Monday the 16th I called. I was approved! It was totally God guiding me and opening every door. Tuesday I went to see the doctor. He did a CT scan and there it was, the monster of all tumors. I grew a 20lb. tumor that would change my life from then on.

He was the size of a basketball. He squashed my ovaries and protected the Cancer from spreading and kept it confined to one area of my uterus. I was still being protected. God allowed this monstrous tumor to protect the cancer from spreading.  Does that even happen! Isn’t God just amazing! I am growing this insane thing inside me and God is at work, squashing out all of the attacks on my body and on my Spirit. While my family was grieving, I was at peace. Itumor will admit that when they first notified me in an office and gave me some options to consider, MD Anderson or emergency surgery at Memorial. I cried out to the Lord, because we hadn’t talked that far. I didn’t know what to do, which one to choose. That night when I was alone, I asked God to please tell me what to do. Which one? I was so overwhelmed! I just wanted Him to take over. Well duh….. He had been in control all that time. He took over when I allowed Him to. The moment I begin to panic and cry and cry and cry and wonder and fear…I TOOK CONTROL!    That was the difference. So guess what I did. I gave it back to Him graciously and respectfully but still scared to be honest. Ok so maybe I threw it back at Him. I did not want this problem. I was mad. I did not want to make all these decisions, so therefore I consulted with Him from then on in all things except for one moment when I completely lost it. The tubes in my nose to wherever they went. I became angry again. They wouldn’t remove them for days and I hated them. I was angry again. After two surgeries in two days, one to save me by stopping the blood flow from the veins this tumor created as its blood supply to feed it. Then pray that I make it through that surgery. Then we waited. Scared to death yet holding dearly to my faith and strength, I had one more surgery to get through. This was to remove the actual tumor from my spine, uterus, ovaries….  In awe that I made it by the grace of God He brought the best surgeons and because one of these doctors was fresh out of school, he was excited about this medical discovery and the complications by it that he made it his passion to be there for me and to do everything he could to help me. God sent all the right people. My family and so many church friends and relatives came to cheer me on. They took over 2 waiting rooms and stayed for 2 days to support my husband, to hold him up and to comfort my kids. I am forever grateful!

When the tumor left my body, my body went into shock and I developed a rare form of an autoimmune disease. I live with a comorbid autoimmune disease of 4 chronic attacks on my body. Lupus is the worse part of all of them. I have come a very long way on recovery. I have gone from 16 medications, weekly infusions by IV to no infusions and only 4 medications. A year ago I lost my insurance and I was forced to live with my disease without the comfort of medicine, injections and infusions. Today I survive because my weekly chemotherapy treatment which I administer to myself every Saturday. I do this so I can work Monday through Friday and I prepare for illness on weekends. I have become so much stronger. I cope with this battle with a strong faith knowing I CAN DO ALL THINGS IN CHRIST, in fact I did all things in Christ because He gave and gives me strength. Everyday! He renews my family who goes through the worst days with me. I have been in and out of hospitals since 2011 fighting my battle with Lupus. There is no cure.

It is extremely painful and when I cry, my husband cries too. The impacts of chronic illness is not just on me, but it has impacted my family. I cannot drive anymore. My son or daughter drives me to my practice everyday. My honey picks me up. Drives have to be short. I cannot go into HEB because I am allergic to their lighting and it produces flare-ups instantly. I got tired of wearing sunglasses and a hat and people looking at me. So I just don’t go anymore. I lost my hair 8 months ago. It is slowly growing back. Curly when my hair was straight. Interesting?  I cannot do outdoor trips because of the sun but I have sacrificed myself many times so that my son could get to an amusement park or zoo. I will continue to make these sacrifices. I miss planting and I miss the outdoors. I have a great appreciation for trees. I love the beach but the beach comes with sun. Easter is this weekend and for the last 5 years I have had to spend it inside while the family is outdoors. I have a granddaughter who loves being outside and at the park near our home. It breaks my heart that I cannot go with her. I do inside things with her. We as a family make it work everyday. I am blessed that my family journeys with me even on the hard chemo days. I am thankful that chemo prolongs my life. God is still working things out.

I opened my private practice and I thank God for all He has done to bring me this far. I have overcome! He has brought me here.

My story is real and it is a daily journey to live with Lupus. I never know what the day will look like, but I am renewed every morning because I get to live, and I get to practice and be a part of the helping community. I have a passion for working with clients who struggle with chronic illness.

If you are struggling with a chronic illness and need help, I want to help you.

I am Ann Marie Godines LPC NCC at Because the Family Matters 361-442-2211

Jeremiah 29:11 11 For I know the plans   I have for you,” declares the Lord, “plans to prosper   you and not to harm you, plans to give you hope and a future.

Steady my Heart! He is constantly steadying my heart! What an awesome father we have!

Categorised in: Marie's Story of Faith, My Journey With Lupus

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: