The Joy in the Storm

Some people share their story as they walk through it, and others share it after the storm is over. We are the latter. 

With courage, I am being transparent in humbly sharing our story, with the intent that it will give someone else hope who is going through some of the same. Feel free to share this with anyone you know who needs to hear a story of hope and redemption, or even someone who needs understanding of someone with a chronic illness or their caregiver. Either way, I sincerely hope this blesses you and brings glory to God who is my Healer. 

“In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ.” I Peter 1:6-7

If I could take a snapshot of the 3 deepest emotions we have felt over the last 3 years, it would be—grief, redemption, and joy. 

Grief—During this time I realized, we can grieve over many losses in life, not just death of a loved one! (And this year in 2020, I believe just about everyone on this earth has experienced this grief, too.) Loss of normal day activities, dates with William, driving my car to the grocery store or taking Koen to the park any day I wanted to, attending worship every week, Bible classes, ladies’ retreats, fun parties and events, friends ‘ weddings and graduations, holiday traditions, walking and jogging at the park. Loss of friendships from betrayal, close friends moving away to another state, trust in our marriage, and actual grief of death with 3 of my grandparents passing away within months of each other in 2019…just A LOT!

Redemption—Since the summer of 2018, we have experienced deep grief and redemption in our own marriage struggles (more on this later, too).

Joy—When I was bedridden last fall and couldn’t walk or even sit up in bed for many weeks, the Lord kept the phrase, “Joy in the Journey” in my mind. I wasn’t sure why it stayed in my mind then, but I tried to stay as positive as I could and I fought HARD to stay alive & heal! The Lord was trying to tell me to “count it all joy.”

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.” James 1:2-4

My chronic illness journey started in 2011 when I was sick and tired of being sick and tired. I was diagnosed with candida overgrowth—and that story will come in another blog post because it’s really how I was catapulted into natural health and wellness! But really, since being born with several congenital heart defects, fighting for life and my health has been a life long journey—more on this later, too. :)

Since 2017, I missed out on a lot of life. Not by choice, but because of chronic illnesses—my body went into sympathetic lock mode, mono (Epstein-Barr reignited from 10 years before), discovery of MTHFR mutation, abnormal cellular growth, and detox pathways weren’t working right, loss of nutrition absorption, parasites, sensory overloading (anxiety with large crowds, loud and high pitched sounds like bells in hallways and alarms, etc.), EMF sensitivity, heavy metal toxicity, copper toxicity, CIRS (fatal) from mold toxicity, mycotoxins from mold, heart problems (aside from my congenital mitral valve stenosis issue) such as tachycardia, high heart rate —cardiologist started me on 2 heart Rx meds, one which I found out I was allergic to a year later that was causing shortness of breath and chest heaviness. I had to find a new cardiologist because my previous one wouldn’t get me off of the 2 meds regardless of my serious side effects. The summer of 2019 I couldn’t leave my house because when I stepped outside, the humidity felt like a 50lb weighted blanket on my body. My body couldn’t regulate my temperature—I couldn’t feel any cold air blowing on me even with A/C at 70 and 2 fans blowing on me. At the worst, I was 100% bedridden because my body felt like the heaviest elephant all over. I couldn’t walk. I couldn’t even lift up my head, sit up in bed or in a chair for a few weeks. It took me about 3 months to walk unassisted again. Isolation in my own home was, in some ways, worse than the physical illness itself. I went to several doctors (both western and holistic), ER for fluids and observation 3 times, health coaches, etc. and some misdiagnosed me. And thankfully, some helped me—some gave me healing pieces of the mystery puzzle. Through the whole 3 years I kept praying, Lord, PLEASE send me who I need to help get me well and find out the ROOT cause of all of this!! Please Lord, just heal me so I can be a real wife and mom again. He did send me an AMAZING doctor last fall who literally saved my life! She said I was very, very close to dying. I’ll share more about her and more details about all of those issues later, because we’ve definitely learned a lot about chronic illness and how it can be buried for years, and why some doctors misdiagnose and miss the root problems. I’m a HUGE advocate to keep searching for a doctor until you find one who will help you heal all of the root problems! In following posts, we will look at some of these issues in depth more and share resources and what we learned from doctors and healthcare professionals, because this information needs to be shared and advocated as I’ve seen SO MANY people like myself who are desperately PRAYING for ANSWERS and healing! 

HOW? How did I get ALL of those problems? Some of them were apparently buried for years and triggered with exhaustion, and some were from what we were going through at the current time with being exposed to hidden mold in our own home, other places we stayed over a few years, and re-exposed in my part time workplace. For a couple of years I was working myself to exhaustion because we were drowning in debt for a few years since I’d had to stop teaching school. William at the time was making a very low salary working for a bank. So when Koen was about 2 years old, I began working 3 part time jobs (substitute teaching at my old school and our 2 home businesses) just so we could not put as much daily needs on credit cards. I had so much shame in our situation. That shame pushed me into working long hours with not enough sleep, so my body and immune system started wearing down. Lack of sleep doesn’t allow the body (especially adrenals and immune system) to rest and restore/reset and detox everyday. I didn’t have the self-care and self-love I needed—I thought my value and worth for that season of my life was working as much as I could just to pay our bills and avoid putting basic monthly expenses on credit cards, even though that’s where we were at the time—groceries and everyday expenses on credit cards. I was so ashamed. I was deeply thankful to stay at home with Koen, but I had to work through and release a lot of guilt for stopping teaching (I’ll share why I stopped teaching school in another post because that was THE BIGGEST PIVOT of my life and our marriage!)

This also triggered a lot of the above issues into a domino fall. The one root issue all along was mold toxicity, then so much of the other was triggered from that. According to my doctor now, I’d had mold toxicity since a child from living in an old home. I continued to be exposed to it daily when I taught school in an older school building for several years—my classroom had water leaks a lot. We then found out in the summer of 2019 that our bedroom and master bathroom had hidden mold—who knows how long it had been there. Thankfully, William and Koen did not get chronically sick like I did, because they had not had multiple exposures over decades of time. 

Mold is serious and severity and symptoms depends on each individual person. It hides in the body for years and doesn’t allow the body to completely heal or detox easily (more on this and MTHFR mutation in another post—your mind will be amazed just like ours was—SO much new knowledge from my doctor!). One or multiple exposures of mold can wreak havoc on someone’s body. And the more they’re exposed, it just keeps piling up, causing more and more serious symptoms and chronic issues. It is not something that is easy to get rid of by just taking a pill for a week and moving on. Someone has to have a VERY specific protocol to get rid of it—slowly and safely under a doctor’s supervision. I’m going to share more about mold toxicity in a future blog post because if you’re like we were, we didn’t know anything about this. And we’ve learned it makes a lot of people very sick, but many times they are misdiagnosed. I’m in a Facebook mold support group with over 25,000 members! Some of these people’s stories are so incredibly sad.

What did my day look like the first year? I missed out on a lot because I was physically so exhausted, plus the treatments I’d started to cleanse my detox pathways (enemas, juicing, ozone therapy, and Rife) were a very strict protocol with specific times of day to do and follow. So I couldn’t just hop in the car everyday and go to a store or park or event with friends. Added to that, I had major sensory overload—many times I couldn’t go to Bible class or sit in the auditorium at church because a room with a lot of people in it sent me into a panic attack. We sat in the children’s training room a lot (which was good because it was easier to help Koen in there or lay down if I started getting very dizzy or tired) or in the back pews by the door. I couldn’t take loud sounds like an alarm or bell ringing; couldn’t go into large grocery stores as it was too much stimuli, even left Costco in a legit panic attack one day. We would later learn all of this is a major symptom of mold toxicity. After a year, these cleansing protocols did their job—my detox pathways were open again, but I was still SO tired. One of the heart Rx meds was a beta blocker, of which a major side effect is fatigue. But we would learn in 2019, that mold toxicity was the root issues. And I’d had it for years. 

A lot of days of isolation at home that was not my choice. That kind of grief trauma hurts very deeply. I had a lot of days I was sad that my “normal life” wasn’t happening. I was missing out on church, fun friend events, sweet memories and traveling with Koen and William, weddings, graduations, and one of the hardest is I had to miss all three of my grandparents’ funerals in 2019. 

I had ZERO control over the speed in which I healed. If you or someone you know has had mono from Epstein-Barr virus  (aside from everything else mentioned above), then you’ll know that the virus arrives and leaves at it’s own time. Mold is very much the same “timeline.” It is like having the exhaustion of the flu every day for weeks and months. What I did know, is I just had to be very consistent with the daily protocol of starting to cleanse my body and rest a lot and pray for A LOT of patience. 

I would rest up for a few days and build up enough energy to go to an hour of church or an hour or two to Koen’s Pre-K school events or travel to a family event like a wedding out of town, but then miss other outings or events right after because I was still needing several days in between to rebuild energy. 

Bottom line—any chronic illness has NO timelines or guidelines and NO QUICK silver bullet healing pills! It is HARD and MESSY, but there CAN BE GOOD to come out of it also! 

1) A MUCH DEEPER faith and connection with the Lord—walking through a valley creates a strong “teamwork” mindsets in a marriage—you hold hands as you walk daily through the mud and muck, and you do not let go of each other’s hands. Ever.

2) It teaches you real life empathy. You’re no longer quick to judge or criticize or gossip about people and behind someone’s back. Because if we’re really honest, EVERYONE is going through, has, or will go through a hard valley of some kind! We are all human! Life is messy in seasons. And life is not perfect, no matter how hard we want it to be or try to make others think it is from the outside. Our life was not meant to be perfect, or how would we long for Heaven—our perfect home.

We do not have control with a lot of things in life. We do have control over our own emotions and reactions. And we can choose to be bitter or better. 

3) It’s given us a unique, detailed perspective on families and individual’s needs during chronic illness. To become an advocate. More conscious awareness for home bound friends or church members. 

4) And last, for the new, real friendships the Lord has brought to me—so many young mommas with little ones in tow, just like me who have had years of chronic illness—lyme, mold, and other toxicities. We validate and understand each other and deeply rejoice with each other for even the smallest of daily victories! We pour hope and encouragement into each other! Reminding each other to dig deep and keep up the healing protocols because our husband and children need us and we love them so, so much! 

To the one who read this and is going through some of the same. I’m here telling you I SEE YOU! You ARE validated. You ARE worthy of complete healing! 

There is HOPE—DO. NOT. GIVE. UP! There ARE GOOD DAYS COMING! Good family memories you will be present for! You will travel again! You will have normal days again! Please know our site is a safe place for you to feel welcome and understood. Feel free to reach out to us if you just need someone to listen, so that you won’t feel alone. I’m so, so thankful for the new friends who did this for me. I want to be there for others also. 

To the spouse, family member, or friend of someone who has gone or is still going through chronic illness—my heart is asking you to please believe them, validate them. You may never understand it because you’re not living through it. But what they are living through is very real. They need prayers, love, and support, not judgment or opinions or gossiping assumptions spread about them. Sadly, I was there once with a friend—I went radio silent with a her several years ago when she became very ill with lyme disease. She was mostly bed ridden for several months. I didn’t understand it. And ashamedly, I didn't slow down in my life to really give her the support she needed. When I became sick, she was there for me because she understood. I deeply apologized to her for not being there for her back then, because I just didn’t “get it.” I am very grateful for her prayers and support during this time. It made a huge difference for me. 

In a later post, William is going to share his perspective on this journey as the spouse and main caregiver, because he has a lot of wisdom to share. 

We are sharing this summary of our story (and more in future posts), because we feel like if we can give just ONE person HOPE and ENCOURAGEMENT, then it’s worth it!