Once upon a time, a 15 year old girl and 16 year old boy met at their high school musical auditions. They briefly chatted, flirted, and parted quickly. A few months later, the girl watched the same boy take a deliberate dramatic dive off the auditorium stage in the middle of the Christmas show and her heart skipped a beat. She didn't even know his name, but for some reason she felt a sense of ownership. After spending the rest of the day together sparks flew. There was no denying it, she was hooked.
Twelve years ago, I met my now husband of over five years. We had a rocky relationship in high school to say the least. Partly because I wasn't allowed to date and I blatantly defied my parents and two, we were insanely immature. Both of us are passionate people who can be impulsive and I especially can get swept away by my emotions. We became very committed to each other, very quickly. It was an intense and quite unhealthy relationship for two teenagers who weren't emotionally ready for that kind of commitment. We fought constantly and I had major jealousy and control issues. While also jumping into inappropriate intimacy, we were left with the consequences of all our poor choices. Yet somehow through all the drama, we remained together. We grew up together and, although making more mistakes than I care to admit, God used it all and brought us into true relationships with Him.
Although I professed to be a Christian from a young age, in my world that just meant repeating the "sinner's prayer", going to church, following the rules and then getting to go to heaven after death. I didn't realize for many years that I had missed the mark. Yes Jesus died so I could go to heaven and yes I needed to repent and believe in Him but I never realized that God didn't just want my words and obedience to rules, He wants my heart, my devotion, my life. When I started to realize the depth of what Jesus did for me on that cross, to give me complete freedom in this life and a unending depth of relationship with the creator of the universe, I knew Jesus couldn't just be a bumper sticker anymore. I wanted Him, all of Him and in return, I wanted Him to have all of me. I may have been a "Christian" but around the age of 20, I truly became a Christ follower. Jesus was no longer a historical figure, He was my King and Lord of my life.
After the drama of high school, we unofficially broke up for several months so we could both "do our own thing." It was basically a time where both of us rebelled and made a lot of sinful choices.. Yet God was there, working in both of us and in His time, revealing to us that if we truly wanted an intimate relationship with Jesus, one thriving and honouring to Him, things needed to change.
Bit by bit, God called us back to Him. We started going to church again, actually reading our Bibles, and pursuing Jesus passionately. We were truly HUNGRY for God. During this time we got engaged. We recommitted ourselves to a God honouring relationship with each other and each a deeper personal relationship with God. Looking back, I find it amazing to see how much God worked in both of us during such a short time. When we finally relinquished our lives to Him, God did not hold back. He stripped our pride, showed us our sins, challenged our faith and drove us deeper and deeper into His awesome power and love. Every day seemed to hold something new in the Word that God wanted to say specifically to us. It was amazing to see His Word come alive and we welcomed it more and more. Convictions on things that once never bothered us, grabbed our hearts and the more we pushed into Jesus, the more we started to see changes. We suddenly had genuine love for others, even people we struggled with. We got a distaste for any TV show or movie with explicit or vulgar material and our attitudes and perspectives on material wealth and priorities were being flipped upside down. It seemed to be that every area of our life was being touched by God and although some changes were painful and (in all honesty) sometimes unwanted, we embraced it, knowing and trusting that God knew best. Our hearts were genuinely changing and our love for Jesus began to be the absolute most important thing in our lives. We allowed God to be the potter, and us the clay.
In the several months leading up to our wedding, doing our premarital counselling, God molded us more than ever before. While God was working powerfully in our hearts, we experienced more intimacy in that short time than in 6 years of dating. Our wedding day became so much more than just repeating vows of love, it became a true symbol of God's grace and redemption, making it more special than I could ever have imagined.
Since that day, our walks with Jesus are constantly changing and deepening. One of the best days of my life was when Adrian came home, kissed me and said "I love you, but I love Jesus more". To the rest of the world, that may sound crazy. To love a god more than your spouse, but Adrian and I were blessed to learn young that when Jesus is our first love, all other love is perfect and complete. The closer we are to God the closer we draw to each other.
We do not have a perfect marriage by any means, but we cant say we've had the typical tough first few years of wedded life. We give all glory to God for taking us through harsh refinement before we became man and wife, and we praise Him for what that has done for our marriage.
I am not proud of the choices we made as young adults and we both carry scars and strongholds which still rise to the surface, but I can look back in amazement at how God masterfully used all of it for good and His glory.
Our love story is His love story and I can't wait to see what lies ahead for all of us.
Last Tuesday (June 18th 2019) I entered Grand River Hospital Kitchener for surgery.
I am no stranger to operations, having my first at one month old. Over the years I've had several eye surgeries, my appendix taken out, dental surgery, two c-sections and other procedures for my chronic illnesses. I know the protocol very well and know what to expect each time I enter an operating room. However, in my current health state (which is quite poor) this surgery posed a number of possible complications. I needed an exploratory laparoscopy to get rid of adhesions and endometrial tissues throughout my abdomen as well as an ablation. Two procedures in one operation that was hopeful to be short and simple.
Over the years I've learned to become my own healthcare advocate. My medical history is extremely long, detailed and complicated. Some wouldn't believe all the procedures and treatments I've done or been on, and with having to see several different doctors in different specialties, I've become quite proficient in the medical world. I know my body and I know what works and what doesn't.
For this surgery we did everything we could to prepare for anything out of the ordinary, but you can only prepare so much. I met with as many of the doctors, nurses and staff I could that would be taking care of me, to fill them in on my history and together come up with some precautions to prevent complications that have happened in the past.
My body does not create enough antibodies and therefore I have a poor immune system (Common Variable Immune Deficiency) making infections likely and healing slow. We also factored in my need for steroids (Addison's disease) and my lupus, that has been causing issues for months. With all these factors, they planned to give me extra meds, keep me overnight (although it was day surgery) and watch me carefully.
It's been 11 days since my operation at 11:30am and what a crazy week its been! I went into surgery nervous but grounded in my faith knowing God was in control. Thankfully the whole procedure went well (I assumed, because the same surgeon never came to talk to me afterwards or give me a review of what happened). I woke up in the PACU with a very sore throat and throbbing pain in my stomach. Once I returned to day surgery, I could start to talk again and sucked on a popsicle while the poor nurses on that floor had to figure out the logistical mess the PACU nurses created. Papers were missing, instructions got lost, miscommunications occurred and everyone was frustrated. They eventually hunted down the Internal Medicine doctor whom I saw in preparation, who then had to rewrite the orders. Eventually things got sorted and we thanked God for His control in all of it (and for getting us out of there!)
On the unit, I was admitted to a ward room and tried to rest. I was very sore and grateful to have a wonderful nurse who went above and beyond (thank you Anna!) to make me comfortable. We had some trouble post op with some unexpected bleeding and bladder issues. I ended up staying a couple days, but went home feeling confident that recovery would go smoothly from there on. Unfortunately by the weekend, my pain started to increase and I started swelling and I definitely was not feeling better.
Monday morning, we were at McMaster Hospital for my regular IVIG treatment. While there, my routine blood work showed infection and the nurses didn't like the look of me so they referred me to the on-call doctor. After a CT scan, we learned I had an infected uterus, a small hernia, fluid around my heart and a small amount in my lungs. I was admitted quickly to the women's Critical Care Unit and started on a treatment of antibiotics and steroids. I was in a huge room all by myself with the most wonderful team to look after me. While getting settled, one nurse came in and said how sorry she was that this happened and gave me a kiss and a hug while I cried a few tears. She said she would be praying for me and in that moment I felt God reminding me that He was still in control. I hated that I had to be there. To get yet another infection, to be in another city away from my family and having to be poked and prodded every few hours. I was angry that all our "preparations" didn't seem to work and tired of having to give our loved ones more bad news. It felt like it was just another wave of nasty circumstances that keep happening to us. We were overwhelmed and burnt out.
I don't know that nurse's name who held me and prayed for me but I know she was a gift from God. She made me remember that He has been with us every step of the way. I made it off the operating table with a successful surgery, and made it through the frustrating logistics of hospital paperwork. My pain and discomfort was controlled with medication and the earlier blood and bladder issues resolved themselves. I was blessed to have a good room and a bed beside the window so I could see the sun. As I went home, God provided us with family and friends who gave us food, support and love. We were showered with prayers and although friends don't always understand the depth of what I'm going through, they are there to support me and Adrian no matter what.
I am home now recovering. Still taking the needed medication and still requiring further testing, but I am home and I am improving. Looking back on these past days, I can choose to focus on all the struggles and pain and frustrations or I can see God's glory and grace throughout every circumstance. I truly felt the power of the prayers our loved ones were praying on our behalf and I may not see what goes on in the spiritual realm but I know in my spirit, God was protecting me from things I can't even imagine.
We don't know what the future holds for my health and wellness but we do know that we are covered in the protective love and grace of our Heavenly Father who is ever present. We made it through another surgery and have made it out the other side, not untouched but with a deeper trust and wonder of the incredible God we serve.
I don't recognize myself these days.
I look in the mirror and see a strange woman, that slightly resembles the Erin I have always known staring back at me. So many things have changed.
In the last 6 months, being on high steroids I began to notice major hair loss. I've never had very thick hair, but this was way more than just post baby hair loss. Clumps would lie in the bathtub after a shower, my hairbrush was always full and attempting to "do" my hair was getting trickier and trickier. I lost all my bangs in the front, and while keeping my length at the back, all that was left up top was random wispy hair that wouldn't straighten properly or be styled in any way. One day after attempting to look nice for some occasion I sat down on the toilet lid and cried. I hadn't noticed how drastically my hair had changed and it seemed to hit me all at once and I was devastated.
I called my mom and poured out all my feelings and hurt. I knew it was just hair, but it was my hair and it was part of who I am. After that, I didn't want to leave the house. All I could do was pull my hair into a bun and wear a thick headband to cover the front. I decided then that I was going to look into hair pieces and see what my options were. I soon discovered that hair pieces (wigs, toppers, implants etc.) have come a long way and can be quite nice and look very natural, although admittedly quite pricy. My incredibly generous parents volunteered to buy me a wig. A beautiful thick shoulder length blonde wig, styled with long side bangs. I immediately felt like a new woman. I walked out of that shop with a new spring in my step and a smile on my face.
Looking back, I feel embarrassed for being so concerned with something as trivial as hair, but I don't regret wearing my wigs or trying to look the best I could with what I had. I realized that God was trying to teach me something bigger than vanity. I had to learn I was placing so much of my identity in my looks and in what I saw in the mirror, instead of the truth that my identity alone, resides in Him and who He says I am.
With medications that give you a ravenous appetite and additional weight gain, I've put on over 35 pounds. My face is moon-shaped and stomach extremely swollen making me appear 6 months pregnant, and all trace of my somewhat lean and toned body has been replaced by saggy (post surgical) skin, stretch marks, and major fluid retention.
I have to admit that this season is hard and humbling. I never realized how much of my identity was in my appearance. From my thin patchy hair, to my swollen toes, I see a completely different person than a year ago, but God is teaching me that I need to release that to Him and try to let His peace surround it. One day I pray to be off some of these medications and perhaps the side effects will dissipate. However I'm daily asking Jesus to help me see myself as He does. I pray He aligns my heart so that I wouldn't grieve a seemingly "ugly" body, but instead grieve an ugly or unattractive heart. This is what I want to focus on; seeking Jesus more and more to sanctify me and mold me into the woman He wants me to be. To shift my focus from frowning in the mirror to searching my heart for ugliness that only He can transform, and allowing Him to do it. God knows my heart just as he knows how many hairs I have left on my head. He sees what needs to be changed, shaped and uprooted, but He also sees my hurts, questions and grief and He loves me through it all. I am beautiful because I am His. I am made in His image and while the blessing of society's definition of beauty may not be mine, the blessing of salvation and relationship with Jesus is all I could ever need.
Every day I have to pause and stop the negative thoughts I have about my body. I need to remember the truth about who I am and how blessed I am to have the healthcare I require and a body that can still do so much, though limited. I need to remember that my heart and love for Jesus is what I truly want to see when I look in the mirror.
And that is true beauty.
Over the past several months, my body has been fighting. Fighting off nasty infections, fighting against itself from rampant autoimmune diseases, fighting for energy and stamina, fighting for any sense of health and normalcy. This has been our life, fighting and praying.
Fall of 2018, I became very unwell. I was having stomach issues, bleeding, pain, pure exhaustion. Tests were inconclusive, medications didn't seem to help and I was shrivelling up into this ghostly, thin shadow of a human. My husband Adrian took a leave of absence from work to take care of me and the boys, but I wasn't getting better. While waiting to see a couple different specialists, I stayed in bed most of the time and just survived from one day to the next. I was malnourished, dehydrated, full of infection, in adrenal crisis, and fighting a major flare of my lupus. Finally, at the hospital, we started to get some answers and solutions. My stomach had H Pylori infection that required extensive antibiotics, and after a colonoscopy and endoscopy, they diagnosed me with a severe digestive motility disorder. My whole digestive track was infected and shut down. I couldn't process food and I was in a lot of pain. Once they got my "plumbing" moving again, and started on proper medications, I started to improve. However, they also noticed my body was completely deficient of cortisol
"Cortisol is a steroid hormone that regulates a wide range of processes throughout the body, including metabolism and the immune response. It also has a very important role in helping the body respond to stress" (http://www.yourhormones.info)
It's a serious thing to be in adrenal crisis, where your body is not producing enough cortisol. The condition associated with this, is called Addison's Disease. It's rare and needs to be monitored. It can require being on steroids the rest of your life.
Steroids are a go-to medication for many autoimmune conditions and can greatly reduce immflamation in the body, but they come at a price with many side-effects. Since December (now being June), I have been on a high dose of prednisone (type of steroid) to counteract both my body's immflamation with Lupus and giving my body cortisol to keep the Addison's in check. For 6 months, we have been on a roller coaster of health highs and lows. It became clear in January that I was not going to get better overnight, and what my quality of life was going to look like longterm was a mystery. Prayerfully, Adrian chose to relinquish his contract at work to be home full time for as long as Ontario Disability would allow. We are still in that place today.
In 6 months, I've had a severe stomach infection, kidney infections, pericarditis twice, and a whole bunch of "women's issues". My specialist in Hamilton over this time has been working with us to try to stop my body from attacking itself. We've made medication changes, diet changes, lifestyle changes and slowly we feel we are finally coming to a light at the end of the tunnel. I have good days and bad days. Sometimes I wake up with lots of energy and feel ready to conquer the world, but if I'm not careful, the next day I won't be able to get out of bed. I've been learning a lot about contentment and surrendering my body, my time and my abilities up to Jesus. Some days all I can do is lie in bed, but even in that, I can bring Glory to God. It's been something the Holy Spirit has desperately trying to teach me through all of this, and I still have a lot to learn, but these months of trials have been so true to what James talks about in the Bible. Trials do refine us. They grow our faith and pull out unhealthy roots, to one day produce good fruit in its place. The joy and peace God has lavished over us in this time has been indescribable. Yes there are days of tears, sadness and frustration. We grieve, wrestle and wonder why, but ultimately we know we're right where we are supposed to be, in the palm of His hand.
Our church community, friends, and family have banded around us both physically and in prayer. Most of them don't understand the depth of what we've gone through and are still going through. They don't know how many hospital trips we make on a regular basis, or the dozens of medications I rely on. They don't see the pain and exhaustion or that some days we are barely holding it together. Dozens of appointments, infusions every 3 weeks, so many IV pokes that my veins are becoming unusable, ambulance calls, fainting spells, random bleeding; these are just glimpses of our reality, all while raising two little boys, and remaining in leadership in our church.
Sometimes it feels like my whole life is a battle. A fight to get up and face the day not knowing what my body will do. A fight knowing when to push myself or bow out of a situation. A fight against isolation and loneliness, and a fight for my mind and heart to focus on Jesus and not my circumstances. It's hard, and more often than not, I revert to my self-centredness and ask "why me"! I forget that everyone single person has their own burdens to carry and heartache to deal with. I forget that my pain is temporary on this earth and one day God will give me a glorified body free of sickness. I forget that so many souls face much harder struggles than I do and still get up and go to bed with God's praise on their lips. I forget that it's not all about me.
So this is where I am. Taking things day by day. Trying to give each moment to Jesus and practice His presence, be in His Word and let Him guide my steps. I don't know what's going to happen with my body. Will we get the immflamuation under control? Will I get to a place of "remission" or relief from the symptoms? Will I be able to get off some medications that are very hard on the body? Will I ever be able to confidently and safely take care of my children on my own again? I really don't know, but I've learned stressing about it, and trying to push my own agenda just makes things worse. God tells me (and all of us) to surrender; lift up the good and the bad and trust in His sovereign plan. Where is this journey going to take me and my family? I really don't know, but I do know that God is already there, calling me into His arms.
Author - Erin
Follower of Jesus, on a journey to glorify God and to advance His Kingdom while battling Chronic Illness in the everyday life. Diagnoses include Lupus, CVID, POTS, IBS, Hemiplegic Migraines and other Autoimmune conditions.