In 2016-2017 I was pregnant with our second child. We were greatly surprised to find out we were expecting again while our eldest (Gabriel) was only 6 months old.
My first pregnancy was hard. I had extreme morning sickness that made me very sick, requiring multiple hospital trips for dehydration. I was always nauseous and throwing up, struggled with my liver, and in general, always felt terrible. Of course on March 15th 2016 when our Gabriel came into the world via c-section, everything was totally worth it.
Six months later, I had that familiar nauseous pit in my stomach and didn't fancy the thought of eating. One morning at about 5am, I got out of bed and took a pregnancy test buried deep in our bathroom cabinet. It was positive.
This pregnancy started out like my first, very sick, and extremely tired (especially having a baby to take care of on top of everything). However things escalated quickly and this pregnancy became dangerous. Our little baby inside me was growing normally and healthily but my body was falling apart. I was too sick to get off the couch most days, let alone care for Gabriel. My husband Adrian was home as much as possible to look after both of us and we really learned about relying on God's provision for us during that season.
Of the many hospital trips I had to make during those 9 months, one stands out. I had just passed the halfway point (20 weeks) and woke up vomiting so hard that blood began to pour out of my mouth. I had to get help right away. Thankfully just up the road, dear friends of ours rushed over to watch Gabriel so my grandparents (who also lived nearby) could drop me off at the hospital.
I felt so bad for my sweet grandparents in their 80's to see me in such a state. I think they were a little traumatized, but I was so grateful they rushed me in and stayed by my side until my husband and mother could get to me. I was quickly assessed and scanned. Baby was fine but I had torn my esophagus and stomach lining, my gallbladder was inflamed and my blood pressure was in the toilet. I was sent to the step down ICU at Grand River Hospital and got hooked up to many machines. It was a horrible few days. I had little rest, couldn't eat and continued to be in pain.
They desperately wanted to scope my digestive track to see the extent of the damage, but being pregnant meant using heavy sedation was off limits. I consented to trying the procedure with minimal sedation in hopes they could get even a small picture of what needed fixing. Funny quirk that runs in my family is that I don't respond to sedation or freezing very well. It takes multiple needles at the dentist to do even one filling and heavy amounts of knock out gas to get me even the slightest bit sleepy. So this time, the doctors planned to shove a long plastic tube down my throat into an injured esophagus while being awake.
My mother got as close as she could to me while the nurses and doctors set up. (Adrian had to leave the unit temporarily and he wasn't allowed back in until the procedure was over). I wanted her right near me to try to talk me through it, but the lead doctor pushed her out of the way. The next thing I knew, I was gagging and crying followed by muffled screams as they shoved and shoved. I heard the doctor shout "Hold her!" so the nurses pinned me down. I couldn't breathe or think or shout. I felt like I was suffocating and then everything went black.
I was only out of it for a few seconds but when I opened my eyes, everyone had backed off. My mom was there, drying my tears and reassuring me that it was over. Her eyes red and puffy as well, comforting me with shaky hands. She later told me, it was the worst thing she had ever experienced as a mother, as she watch them seemingly torture me. I glanced at the clock and couldn't believe that almost an hour had passed, and after all that agony, it had all been for nothing.
Over the next several days, my terrible pain was monitored and I was given medicine to heal my digestive track. I also had bouts of contractions and fevers that were being watched as well. After I was deemed stable enough, I got to go home on bedrest, awaiting the next physical disaster I was unknowingly going to face. I wish I could say this was the climax of troubles during my pregnancy but it was not. This story also doesn't have a warm and fuzzy take away message. The truth is, this event shook me to my core. It was terrifying, painful and traumatizing. I was so grateful to have people visit me and pray with/for me. I knew I was surrounded by loved ones and I knew God hadn't left me, but still I felt so alone.
Sometimes we can look back on difficult circumstances with grace-given hindsight and see what amazing things God was doing in all the madness. This was not one of those times. I look back and see pain. I'm learning that we will not always see God's hand in things on this side of eternity, even though I know He is tirelessly working beyond our limited viewpoint.
God says to praise Him in the good and the bad. I didn't do that then, but I choose to do it now. I choose to cling to the Truth that says "He will never leave us nor forsake us."(Hebrews 13:5) I know Jesus stood beside me every second of that terrible week and I know He did not stand there idle. So I praise Him. I also surrender the pain, trauma and even my resentment up to God, confessing I should have done that ages ago. Instead of pushing this awful event from my memory, I choose to make it a week NOT to forget by writing about it here. Not every story is wrapped up nicely in a bow, at least not from our perspective, but I need the reminder that God never promised "pretty" or "easy" or even to give answers. He promises us that His plan is best, and to trust Him, regardless of circumstances or outcome.
What's a story on your heart that's left you with scars and unanswered questions? What's your dark cloud right now? Sickness? Divorce? Death of a loved one? Battling addictions? There's a saying: "God is good, All the time. And All the time, God is Good." An easy mantra when things are going well, and (though slightly less easy) quotable when you can see the silver lining beyond the black cloud. However, it's when we can't see anything at all, that makes this quote so vital to our lives. It may not be a quoted Bible verse, but it definitely comes from Truth, and something to cling to, especially when there seems to be no evidence to support it.
I don't have all the answers to my questions and my life circumstances are certainly not all wrapped up in platitudes and inspirational testimonies. This is just one piece of the jigsaw puzzle, that is my life and it's a dark one. I'm just thankful one day God will show me the whole story, and I trust that although I don't understand everything now, one day, by His grace, I will.
And it will have all been for my good.
Every three weeks, my husband and I wake up early, leave the boys in the care of my mother in-law, and head to McMaster Hospital in Hamilton Ontario. I call it Infusion Day.
Common Variable Immune Deficiency :
"CVID is characterized by a low level of specific proteins (called immunoglobulins) in the fluid portion of the blood. This results in a loss of antibodies, and a decreased ability to fight invading microorganisms, toxins, or other foreign substances." (https://rarediseases.org/rare-diseases/common-variable-immune-deficiency/)
In short, my body does not have a proper immune system.
It took years to get this diagnosis and receive proper treatment called IVIG. This blood product from donors, contains the antibodies someone like me doesn't produce enough of. It has shown good results for my condition as well as many others, however it is not sustaining. The infusion of this product only temporarily replaces a person's immune system as it is metabolized quickly, making it a life-long treatment.
I've been going to the Medical Day-Care Unit at McMaster for this treatment for over four years now and it has become a sort of home away from home. Every three weeks on Fridays, I head over and the first thing I do is chat with the receptionist Nina, who is the superwoman of her field. Patients adore her, nurses praise her, and doctors respect her. Got a problem? Go see Nina!
After checking in, I'm assigned to my chair for the day which is usually the same every time. The unit has over 20 chairs (reclining hospital chairs) with a seat beside for a loved one to sit with you. Your nurse is responsible for you and four others, all who need IVs started, blood taken, pre-meds administered and vitals checked every 30 minutes. They are busy!
Arms are then wrapped in heated blankets to make the veins pop before attempting the IV insertion. Unfortunately since the majority of us need to be poked so often, our veins are damaged and tricky. It takes a combination of great skill on the nurse's part, tricks of the trade, and prayer to get an IV in me properly. Sometimes we can get it in on the first attempt, other times we are poking different holes for over an hour. Hydration helps too, so I try to drink as much as I can before hand.
Once patients are set up and given all their meds and IVIG product, they can relax. The unit has a kitchen with snacks, juice, and coffee for everyone and also a selection of movies with old school portable DVD players. Some people sleep or keep their hands busy with knitting or typing. Some nurses will even play a card game with you if they get the chance. I get cozy with a couple blankets, my fuzzy wool socks, and a movie, while Adrian has his own entertainment or work to do, and sometimes when feeling up to it, we get to visit with people who have become dear friends.
These people have become a regular part of our life and are a true blessing. I've gotten to walk with others on their health journey and see people through the ups and downs of illness. Our unit does other treatments for patients including transfusions of iron and blood, draining of blood and even chemo. Sometimes we only see people once or twice but there are others I've seen for years.
We are like a big "family".
First there are the doctors who are behind every diagnosis, all the orders, and treatment that we receive. They are usually off the unit but working tirelessly for their patients. They are the "fathers" of the group. Next we have our "mothers", the nurses who, just as smart and vital, keep everything functioning. They are an incredible team, talented and hardworking. They keep the "home" going. They do full care, keep us safe, perform their tasks tirelessly, and are always there to lend an ear or hold your hand. Together our doctors and nurses are irreplaceable and such a blessing to each one of us. We patients are the "brothers and sisters", sitting next to each other and in our own ways, giving comfort and support to one another. We commiserate, make each other laugh, and even pray together. I've been blessed to hold the hands of unfamiliar faces, patient or nurse and pray for the strength and courage to keep going, in whatever struggle they are facing. Not one of us are exactly alike in our state of health, but we're on this journey together and I hold each person I see up in prayer. It's a privilege and I'm grateful for every person there.
Like any family, we have our quirks and disagreements. Nurses have power struggles, patients can make ridiculous demands, doctors lose paperwork, and someone occasionally gets forgotten. Adrian and I sometimes just listen to the chatter around the room. Anyone who knows hospitals knows that nothing is private. You hear everything including; medical emergencies, complaints, family squabbles, someone losing a game of backgammon etc. and sometimes you can't help but smile when we hear some of the hospital gossip like pregnancies and promotions. There has also been the occasional nurse who gets a very loud/public scolding from across the room. It's never a dull moment.
As creatures of habit, we have our "usual" chairs, nurses we prefer, and specific times we like being scheduled, so when things get shuffled around a bit, we catch ourselves feeling possessive of what we're used to. When I start to feel that way, God reminds me that this treatment is a gift, not something I am entitled to. IVIG is very expensive, but I don't pay for it. Here in this clinic, my health and well-being is taken seriously and monitored closely, and I get what I need to live without fear of catching every illness.
About an hour or two into my infusion, the discomfort starts. Some people experience minimal side effects while others are very ill for up to 48 hours later, depending on what other conditions they may have or the speed at which they receive their treatment. I'm somewhere in the middle. My energy starts to drain and any colour I had in my cheeks disappears. I get nauseous and achy and sometimes spike a fever. I call it, the flu in a bag. After I'm finished my infusion we say goodbye and slowly walk back to the car. Once home, I get into my pjs and crawl into bed. I have medication that helps with the side effects but I still feel quite sick with joint pain, vomiting, and a pounding headache. Some weeks are better than others. Sometimes by the next morning, I'm feeling fairly well, and others I struggle for an extra day or two but it's a small price to pay for so much in return.
I am so incredibly thankful to be fairly stable in my health and have options if/when things go downhill. I have friends in this clinic however, who are not doing well or getting better. Some are too sick to walk or eat, relying on feeding tubes and constant care. Some are fading right in front of me, growing thinner and weaker each visit, and some are dying. It's heartbreaking and sometimes difficult to watch, but through it all there is the overwhelming feeling of community. Even without words, we can find comfort in each other and I pray each one will find the ultimate comfort and peace that can only be found in Jesus Christ.
Infusion days aren't easy. They are tiring and nerve wracking and painful, but they have become a regular part of life in my family. It's a treatment that helps my body function and be able to be a wife, mother, and friend. It's a place that allows me to walk alongside people I never would have met otherwise and get to pray for them and love them. Along with all the struggles we as patients have to face, we also get to share laughter, celebrate milestones, and see the sacred beauty of life here on earth through many different perspectives.
Infusion days are tough, but they truly are a gift.
If you're reading this for the first time, welcome to my blog!
Over the past few years I've used this blog as a sort of diary, putting into words some of my experiences and what I've learned in the process. Out of fear and uncertainty, I haven't shared it until now (November 2019) but am choosing to do so because I feel it is what God is asking me to do. Because I am cheap and unwilling to pay a monthly fee to have more editing choices, I can't change the order of the posts. If you wish to go to the start of my blog and follow chronologically, you'll have to scroll down and go to the previous page. My first post is called "In the Beginning". The posts may make more sense if you read it this way.
In these posts, I have and will continue to share times of struggle and joy as a wife, mother, and daughter of the King. I'm not a theologian or spiritual titan and do not claim to "have it all together" or "know it all". I'm simply a grateful follower of Jesus, on a journey to serve and love Him.
I desire to share my stories in humility and truth, and perhaps in the process give others a window into my life that they may not have otherwise been able to see. I also pray you may find some encouragement, for I know we all carry our own heavy burdens in this life. Perhaps you yourself have a chronic illness, physically or mentally and too are trying to live in the midst of the storm, or maybe you're a care-giver or family member trying to support someone with poor health. I hope and pray that God will use my humble experiences to reach even one person who may feel alone or hopeless, whispering reminders that we can have joy amongst the sorrow and peace in the pain.
My prayer is that God will receive all the Glory, and this blog will be honouring to Him.
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.