It’s been a little while – too long, really – since either one of use has written here. Life has been a bit tumultuous for both of us.
In November, Sarah’s baby had complications with his shunt and was life-flighted from southern Utah to northern and was in the hospital for several weeks. Throughout a series of events and surgeries, he has taken a couple of steps back neurologically, which is hard especially for Sarah as his primary caregiver. So, there have been adjustments there with a different, more involved level of care.
My son and I got sick at the end of November – he mostly got better and I was in and out of the ER for over a week with unrelenting diarrhea and dehydration leading to electrolyte imbalance. I still have lingering symptoms after treating a parasitic issue, and now it seems as if mold symptoms in me and my son have flared into full force again, which is really discouraging.
We have known about an issue in our townhouse since shortly after we moved in, but have tried to make the best of it (we run a Hi-Tech machine every night in the kitchen, where we believe the problem to be under the sink). Since we are renting we are unable to pull the cabinet off the floor and check to see if there is a problem and be able to fix it.
I know winter time is hard for people who are mold-affected, but the depths of suffering, allergic reactions, and brain and nervous system toxicity makes it extremely hard to even function. If you’re in that boat with me, I feel your pain and I am so sorry.
Both of our families are looking for a different home to live in. It’s difficult no matter where you live to find something “clean” enough *now*, never mind keeping it that way, not knowing how much care was taken as it was being built.
So, I suppose this is a bit of a “cloudy day” post, but we are looking forward to, hoping, and praying for many more sunny, positive days to come. In a literal sense we have a lot more sunny days here where we are than much of the US, and for that I am very grateful. My head doesn’t like those cloudy days too much!!
Some of you are aware that Sarah’s baby is in the hospital right now with health complications. Thank you for your prayers. I’m sure Sarah will share more about that someday when she is ready. I wrote this blog post last week before baby was admitted to the hospital, so this is in no way a passive-aggressive way of addressing the wonderful people who have been great comforters during this time. 🙂
Caution in Comfort
When you’re going through a really rough time, often people who reach out to you do their best to comfort and console you. You may be able to identify with the comforter. You go visit your friend in the hospital, or attend a funeral of a tragic loss. What do you say? How do you relate with someone who may be going through some of the toughest days of their lives?
I watched a video recently where a small group of women were weighing in on this topic. One of the things that they emphasized was what not to say.
“Don’t tell them your story. This is not the time to relate to them by sharing what you have gone through in the past. Now is the time to enter into their story as they suffer deeply.”
I appreciated these words, and have found them to be very helpful in how I relate with others. This way of thinking has made me bite my tongue a number of times as I try to relate to my hurting friend. How would I want to be treated? What would I want to hear – or not hear?
When we make broad, sweeping statements, or relate someone’s suffering to that of another’s, we are assuming that we know what they are going through. “My Uncle Pete had the same kind of cancer! He suffered through chemo and radiation – and then went into remission!” Or, what’s worse, is when well-meaning people (like me! I am not excluded from making such faux pas!) make the same sort of comment but end with “but, it didn’t work, and he died a year later.” Ouch.
A grieving person often doesn’t have the capacity to take on more grief. Sharing a story of another person’s grief, struggles, and perhaps death is often more than a hurting person wants to – or can – bear.
And, really, when we’re busy sharing our stories, we’re not allowing them to share theirs. Their current story is in the process of being written – and guess what? You just walked onto the page!
Words that Encourage
God has blessed me with people in my life who really care and have taught me a lot about what it means to love others through suffering. These are some of the questions and statements that they have used to encourage me throughout my years of struggle with chronic illness.
Potential Questions to Ask
What is your pain like?
What is your most prominent/irritating symptom?
What does a typical day look like for you?
How are you really doing? (Your friend may or may not open up to you. If they do, be prepared to listen with understanding and compassion! Don’t breach their trust by being judgmental or gossiping about what they share with you.)
Is there a specific book or website I can read to understand better what you are going through?
How can I help make your life easier?
In what way can I specifically pray for you? (And follow through, then let them know how you are praying, or that you did pray for them!)
Some Statements to Ponder
I am so sorry you are going through this right now.
I believe you.
I pray for you every day [when I get up, when I go to bed, etc.]
I know your illness has consumed your life, but it does not define who you are!
I love you. I’m so thankful you are my friend.
I know you would be different/this situation would be different if you had a choice.
I don’t know why God has allowed this in your life, but I am trusting Him and His plan for you!
You’re stronger than you know, braver than you think, more loved than you can imagine.
God is very much paying attention – He has not forgotten about you.
Chronic illness brings sadness and grief. It’s hard to be someone that you don’t want to be. I have said many times that I’ve felt like I need a vacation. I’m so worn down, so tired, so unable to even think of pressing on and going forward. But, there is no taking a vacation from yourself.
He’s Been Here Before
It makes me think of Jesus’ time in the garden where He was praying to the Father. He was tired. He was looking forward, saw what His life was bringing, and didn’t like the looks of the suffering to come. Pain usually isn’t something that we choose. Jesus didn’t want it either. But, He prayed for the Father’s will.
“Father, if you are willing, remove this cup from me. Nevertheless, not my will, but yours, be done.” Luke 22:42
When God brings people across your path who need comfort and love, I hope and pray that your heart is able to weep with theirs. That as you sorrow with them, you will encourage and lift them up. That through your love and care, your friend will know what it means to suffer with hope.
They may not love this chapter of their life’s book, but they will love to have you as a part of their story.
When we made the change from northern to southern Utah, we looked forward to the potential of having a “safe” home where our family could recover and heal from our mold exposure in our previous home. Although it doesn’t always take a lot of time for a person’s body to be overwhelmed by mold toxins, it seems to take awhile, and even years, to come to a place of recovery.
Andrea Fabry writes about her personal experience with “getting her life back” in this blog post. One of the comments that she makes is “For me, recovery has been more about relinquishment than restoration.”
“For me, recovery has been more about relinquishment than restoration.” -Andrea Fabry
We’ve relinquished a lot. It’s hard to accept that maybe life will never be what we would prefer. But, we know that nothing in life is perfect, and God can still make use of us (maybe even more so) despite our weaknesses and brokenness.
Our current living situation is one that I have been meaning to share, and that will have to be another blog post for another day. The bottom line is we are renting a townhouse in a city that is a bit less-than-perfect, but again — perfection doesn’t exist in this world, so we are making do the best we can with where we are. 🙂
When we moved in, we had a discussion with the landlord about how we weren’t sure if we were going to stay. Everything in life was so up in the air that we weren’t sure what type of employment my husband was going to be involved in — no details were hammered out, but we knew that we needed a place to land that had cleaner air than where we had come from.
So there were questions. What if we have to move out early? What if this place doesn’t work for us and I totally go downhill again? Where will we go then? What are the unknowns of renting a townhouse (a first for us) as far as outdoor pollution from neighbors, etc.?
It’s been a bumpy ride. We moved in March and physically things flared a bit but then smoothed out. Then we got to the point where we had to turn on the air conditioning. Yikes. Major flare of symptoms. But our area gets up to 115° in the summer time, so A/C is a necessity. Throughout the summer I spent a lot of time in the sun and that seemed to help overall (and/or I just accepted having to deal with more discomfort, migraines, pain, etc.). Then the weather started to really cool off.
A lot of people with chronic health issues see a major flare in symptoms in the fall. Although there is no reason for this per se in medical literature, western medicine has taken a small stab at it by labeling depression and fatigue of the winter months as Seasonal Affective Disorder, or SAD. But the problem is that so many of the symptoms endured by the “Chronic Fatigue”, or “Lyme Disease” or “Mold Affected” community go so far beyond just a little extra tiredness, depression, or suicidal ideation that it seems there must be more going on here than just a lack of sunlight leading to a few extra yawns.
Erik Johnson is a mold avoider who came upon the subject of avoidance as his own health deteriorated due to a “mystery illness” that happened around Lake Tahoe in the mid-1980’s. He has spent the last 30 years attempting to bring awareness to the problem with toxic mold to the medical community. He calls this phenomenon of feeling terrible – sometimes to the point of being bedridden – in the fall as being the “November Factor“. Erik relates this worsening of symptoms directly to the amount of mycotoxins from mold in a person’s environment. It has been shown anecdotally that once a mold-affected person is in a completely clean environment and is able to start healing, they usually have a huge improvement in symptoms during this time in the fall that is usually a set-back, sometimes to the point of being unaffected by it altogether.
So, back to our present situation. My symptoms have ramped up again. I know that our environment is playing a part in that. There are two areas in our house, where, if torn into, I am 95% sure there would be hidden mold (and my past track record of knowing where it is, is pretty accurate…. unfortunately, I am not always an immediate reactor, so it may take some time to figure out exact location issues).
We were initially hoping that we would be able to find a lot to buy and build a safe home here. But, real estate in Utah has pretty much made that impossible in the immediate area. Even buying isn’t looking realistic because we just can’t buy an older home again. And newer ones are built so shoddily (generally speaking, whether it be construction methods or materials used) that it seems like they deteriorate and have moisture issues very quickly.
A realtor stopped by our townhouse yesterday, soliciting business.
I tend to have a mental debate with myself in these situations.
As the person at my door is talking, I wonder: do I hint at some of the specifications that we would need and see how quickly their eyes glaze over, or just politely smile, nod, take their info, and shut the door?
I did hint at a few with this guy. He seemed nice and willing to absorb a bit of information. I didn’t give him anything this extensive, but here are a few of the “outdoor location” items that we look for when considering a place to live, in no particular order, and this certainly isn’t exhaustive:
Distance from cell phone towers and neighbor’s WiFi: It is becoming increasingly hard to avoid cell tower and WiFi radiation. I am quite concerned about the coming roll-out of 5G towers that will literally be changing our environment into a “toxic soup” of nnEMF (non-native electromagnetic field) radiation and pulsed radiofrequency radiation (RFR) which is damaging on so many levels, but the most alarming is the ability it has to alter DNA.
Valley vs. hilltop: Here in Utah elevation vary dramatically. Overall, a lot of toxins tend to settle in lower-lying areas. Our town has an issue with sewer toxins that settle in little valleys, and the toxic smell is especially noticeable on summer nights. So, the higher, the better. We are at an altitude of about 2,500-3,000 ft with a number of peaks and valleys in our geographical landscape.
Toxic waste locations: This would include things like the local landfill, and Superfund Sites, where there is known or threatened release of hazardous substances, pollutants, or contaminants. (View a map here.)
Water: Bodies of water can have algae blooms or cyanobacteria. Cyanobacteria has been studied and speculated to cause Lou Gehrig’s Disease, or Amyotrophic lateral sclerosis (ALS).
Proximity to industry: Factories, oil refineries, power plants, and the like are huge polluters. We open the windows as much as possible to allow fresh air to come inside, and this just isn’t possible – or at least doesn’t accomplish our goal – if we live near toxic polluters.
Agriculture: Sarah and I grew up in the Midwest, and information is now appearing about the toxic effects of Glyphosate. I do not underestimate the effect that carcinogenic toxins like pesticides and herbicides have on our health, especially if we have impaired detoxification systems to begin with. It’s our goal to avoid living near fields and places that will be heavily sprayed by these toxic chemicals.
Fracking: Fracking is the process of injecting water, sand, and chemicals into the ground in order to force oil to the head of an oil well. It can be dangerous to your health to live in a high-fracking area. Respiratory and nervous system problems, birth defects, blood disorders, and cancer are some of the problems seen in areas where fracking is prevalent.
My views on indoor and outdoor pollution have changed so much and continue to morph as I learn more about the damage that both of these cause to our bodies. The world can look like a pretty scary place. But, we can use this information to equip ourselves to be able to make the most wise choice available to us. We can’t just make the toxic and bad go away (although I wish we could), but we can try our hardest to practice resilience in a toxic world.
After we took an eye-opening “mold sabbatical” to Utah, we returned to Illinois, embarking on the second greatest experiment of the summer – seeing how our bodies coped with being back in the Midwest.
Jotham saw the biggest gains when in the clean air of southern Utah. But he also took the biggest hits being back in Illinois. It’s been so hard to watch the progress slip through our fingers. He didn’t lose everything, and has made some developmental progress over the summer, but he is so sensitive to the environment, which is influencing his growth and development.
There are so many air purification methods out there, it’s enough to make my head spin. I enjoy researching, studying and learning. But wading through the technical specifications & scientific studies can be exhausting.
There are hydroxyl and ozone generators, ionizers, HEPA filters, photocatalytic oxidation (PCO) technology, UV lights, fogging protocols, chemical sprays, and more. Some units mitigate VOCs, most capture mold spores & dust, and a few sit there looking pretty and making noise.
I started looking for a high-quality air purifier in the early months of our mold-avoidance days. We were living in a hotel that was two years old, and there were very strong volatile organic compounds (VOCs) from the newer construction materials and cleaning products. I opened the three windows in our suite as wide as possible (which was no more than a few inches, for safety and liability reasons), but we still struggled greatly with lethargy when we were in the room. Bringing in fresh air can be an effective way to lower the amount of formaldehyde indoors, but our fresh air options were limited.
Charcoal’s Purification Powers
Carbon is the first thing I looked into when searching for a product that would adsorb gasses. It is often used in air filtration to capture VOCs. As a side note, the first time I read about this filtration technology, I thought someone was misspelling aBsorb over and over. I eventually realized it was purposefully spelled aDsorb. According to dictionary.com, adsorption happens when something gathers on a surface as a condensed layer.
A block of carbon can do a decent job of mopping up the air that moves through it, but if a shift in humidity or temperature occurs, it can re-release the contaminants it’s supposed to be hanging onto, putting them right back into the air.
That did not impress me, and I quickly became disenchanted with carbon. Since the thicker carbon filters aren’t cheap (you need the carbon to be almost a foot thick to be most effective), it didn’t seem worth the cost ($600+), not to mention the extra work to try to prevent it from dumping its toxic soup back into the air.
Introduction to EnviroKlenz
Shortly before this time, my sister told me about someone she knew personally who had just built a brand new house out of conventional building materials. They were sensitized to mold and chemicals, and upon realizing they couldn’t live in the house without adverse symptoms (due to the high levels of VOCs), they ordered an air purifier and furnace filter from EnviroKlenz, a company I’d never heard of. After several weeks of running the purifier and having the filter in their new furnace air intake, she was able to move into their home with little trouble.
This sounded promising to me. The more I looked into it, the more intrigued I became, and I requested more info from the company.
You may be familiar with the story from the Bible of Jesus spending time with his disciples when they walked by a man who had been blind from birth.
With surprising efficiency, Jesus’ disciples quickly assessed the blind man’s physical and spiritual condition, and asked Jesus:
“Who was it that sinned [resulting in the punishment of blindness], this man or his parents?”
Maybe you’ve been in the blind man’s shoes before (I have). People like to figure things out. Sometimes we fallible humans make the mistake of trying to figure out other people’s problems for them (in 10 seconds or less).
Throughout your suffering, you may have experienced this quick (and ungracious) assessment and accusation.
It’s not a fun place to be. You’re begging for God’s mercy, for Him to send help.
God, please just send someone to love and comfort me during this trial.
But that friend you saw coming, who you thought might be your answer to prayer, ends up judging and accusing instead.
Job knew how this felt.
Eliphaz, Job’s friend, finally broke the silence: “Remember: who that was innocent ever perished? Or where were the upright cut off? As I have seen, those who plow iniquityand sow trouble reap the same.” (Job 4:7-8)
Bildad, Job’s second friend, says much the same. “See, God will not reject a blameless person nor take the hand of evildoers.” (Job 8:20)
And Zophar repeats the refrain. “If iniquity is in your hand, put it far away, do not let wickedness reside in your tents. Surely then you will lift up your face without blemish; you will be secure, and will not fear.…Your life will be brighter than the noonday, and its darkness like morning.” (Job 11:14-15, 17).
Can you imagine being the blind man who had not done anything to cause his blindness?
Yet snap judgments were made about his condition on a daily basis.
He couldn’t even see his accusers, but I’m sure he heard their words.
October is almost halfway over, and the fall and winter holidays are quickly approaching! I thought I would share a few fun options that I compiled for healthier Halloween alternatives.
We do our best to avoid foods with artificial colors. When our son was young, he would get chemical burn diaper rashes after consuming foods with these colors. As he grew, we noticed a drastic difference in hyperactivity and neurological effects from dyes. Other concerns are the potential for dyes being carcinogens, as well as causing potential genotoxicity¹. Needless to say, we steer clear as much as possible!
Many kids are forced to dodge candy with nuts and other potential allergens. Maybe you have heard of the “Teal Pumpkin Project” — an organization whose purpose is to promote awareness and allergy-free options for kids so everyone can feel included. Most people who participate in this project for Halloween place a teal pumpkin in front of their door so children are aware that there are safe treats available at that home!
The TEAL PUMPKIN PROJECT and the Teal Pumpkin Image are trademarks of Food Allergy Research & Education (FARE).
Check out these 8 options that could help you promote a safer Halloween in your community!
Over ten months ago, my husband and I began seeking a mold-free rental for our family in central Illinois. Our goal seemed pretty simple at the time. We needed to find an environment with no mold so we could turn around the immune damage we had already sustained.
We thought we were different than other moldies that were “worse off.” We assumed that we could find a better environment and stay ahead of the curve so our health could turn a corner. But that’s not what happened.
When we moved out of our house, I quickly learned what it’s like to become “unmasked” to molds, chemicals, VOCs, EMFs, and environmental toxins. For us, that meant hypersensitivity and hyperreactivity entered our lives, and as we looked for a safe dwelling to rent, we got more and more discouraged.
Our hope was to find a decent unit with no visible mold. It had to be new enough to have no mold in the HVAC, and old enough to be low VOC (new building materials “off-gas” chemicals for years). However, our hopes did not mesh with reality as I physically reacted to every rental we viewed, and we found mold in all but 2 of the 40+ we toured (I get reactive airway symptoms around mold, which turns into anaphylaxis if I don’t get away from the trigger). The two rentals without visible mold were high EMF and VOCs (my head feels like it’s being squeezed in a vice grip in those environments).
We looked at apartments as low as $650 a month, and condos as high as $1300 a month. The price point made no difference, and some of the moldiest were the most costly.
Our mold journey is still in a state of upheaval, and I’ll post an update on us once a few more details come together, but for now I thought I’d share some of the things we’ve learned to check when viewing rentals. Our eyes have been opened to how prevalent indoor fungal growth is in the Midwest.
After the call from the agency that birth momma was in labor, I didn’t have a good feeling about the whole thing, but was praying that God would just help us not to go if she was going to change her mind. Especially since I really wasn’t feeling great and had little stamina.
Thousands of dollars in plane tickets and reservations later, we packed for our trip and went to bed, planning to leave the next morning.
I can’t even begin to tell you the number of ways that people helped us. And I know that I didn’t thank them enough, because in my fatigue and disbelief, I was just trying to put one step in front of the other.
Some people came and helped get us ready to go, one friend came and cleaned out my fridge and took care of last-minute details. (We were planning on being gone for 3 weeks to a month, and didn’t want to return to rotten food and other issues with our house.) Others brought us their gifts that they were going to give us at the shower that coming Saturday, which ended up being canceled (for obvious reasons!).
Another few friends spent HOURS, and I mean HOURS while we were gone on a huge order of VogMasks that I was submitting. This was my “big” responsibility that I was going to get out of the way before leaving.
Winter inversion (pollution) in northern Utah is pretty bad, especially for more sensitive types like me. So, I decided for the second year in a row to order a bulk order of the masks for people in the area of Salt Lake City. I was literally posting to Facebook the pick-up times and locations for the following week when we heard of our birth mom’s labor. These friends were just incredibly kind, giving, and sacrificial. They sorted and distributed the masks during our time in Florida.
Sadness in Florida
Our flight that morning of February 19th entailed the most harrowing turbulence I have ever been through as we landed in Denver. Our 4-year-old son was buckled, but still flying around his seat. I was doing my best to hold him down on one side of me, while gripping Josh’s leg to steady me on the other side. After our layover in Denver, we flew to Jacksonville. The baby had been born in the morning, and we were unsure if we’d go right to the hospital upon arrival or to a hotel.
Adoption has been an interest and passion of mine for years. Before we had our son, I researched adoption and although we never put anything in motion, we had many conversations about whether the Lord would have us to move forward with growing our family this way.
Fast-forward to 2014. We were finally settled into a house after traveling for a year and then renting for another two. Although my health wasn’t yet 100% after being diagnosed with Lyme, the trajectory was upward and things were looking alright for taking the next step.
Since having our son, I haven’t felt like another pregnancy would be a positive for me physically. I’ve had a couple of miscarriages, and it appeared the Lord was directing us away from more biological children for the time being. (I know, there are a host of things I could have considered from a physical standpoint, but I’ve just never felt that was the best option for us right now.)
So, we contacted an adoption agency and got the ball rolling for our homestudy. The homestudy process is when you meet with a social worker over a series of visits who is basically investigating whether you are fit to adopt. It also involves paperwork and more paperwork and more paperwork! (No, not as much as a dossier that my friends have had to complete for international adoption, I admit.) Background checks and FBI finger printing and physicals are also required.
After enrolling with an agency in Michigan that facilitates adoptions in Michigan and in Florida, our homestudy was approved, and we waited. In the meantime, we raised funds. You may well know that adoption isn’t cheap. The national average goes up each year, and is currently $40,000. The Lord has provided for our needs throughout the years, but we don’t have extra, and certainly not tens of thousands extra.
My sister and I put a bunch of work into an online auction. Wonderful people donated many different items to be sold, and it was a great success. Then we planned a yard sale. People were amazingly generous once again, and gave so many items to be sold. Our neighbors were so kind to us. When buyers realized that the sale was to support adoption, they gave even more above their purchase price.
Late summer 2015 we were vacationing in Park City, UT. As our family was sitting around a table doing a puzzle together, my phone rang. Our profile book had been shown to a mom, and she chose our family for her baby! We didn’t know that day if it was to be a boy or girl, but after an ultrasound the following day, we found out she was pregnant with a little girl.
We entered uncharted waters – building a relationship with this birth mom that would carry us throughout the next 5 months of her pregnancy and, we hoped, into parenthood of her daughter. She was a girl with a big personality, and it was fun to get to know her.
But I still had so many doubts. Was this really what God wanted for us? Was it really going to work out? But every time I doubted, and asked God to just confirm this path in my heart, He did. Either through encouragement from others, or money in our mailbox, I was amazed at His provision.