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.