Fighting Mold Illness Is a Game Of Chutes and Ladders. Currently, I’m at the End of a Long Chute.

The treatment path for mold illness follows three broad, consecutive steps:

  1. Ensure you are living and working in a mold-safe environment.
  2. Take medication to bind excess mold and remove it from your body (generally, you end up with mold illness because your body is not good at doing this without medical assistance).
  3. Complete a six month course of medication called VIP that is supposed to repair all the lingering damage caused by mold illness.

Sounds straightforward, right?

Wrong.

First, keeping your home mold safe requires constant vigilance. In our case, we have mold killing UV lights in the HVAC vents, we use highest quality HEPA air filters and change them religiously every 60 days, and we have air purifiers in every room. Additionally, my husband and I are constantly on the lookout for any signs of water damage or intrusion either internally or externally.

I swear, as a result, we have about the cleanest air in a five state radius. But getting here took months of work and diligence, and I could not move on to step 2 above until this was complete.

Step 2 can go on for months, depending on how well you tolerate the mold binding medication. I didn’t, so I spent well over a year working on step 2 before getting to step 3 late last year.

I was rolling along with step 3, until I had a few accidental mold exposures while traveling.

And that’s where the dreaded long chute comes in. You see, if you have a mold exposure during step 3, you need to stop that step and go back to step 2 without passing go. And you cannot return to step 3 until you have successfully completed step 2.

It’s almost October, and I have been working on step 2 since March.

Long chute.

I would like to pause here and acknowledge I am aware I’m speaking in highly non-medical terms. If I had regaled you with the actual terminology and details of each step, you would have stopped reading long ago. Trust me, you are better off with the topline descriptions.

Plus, that’s not the point of this post. I tend to shy away about sharing exact details of my treatments and medications because each person is different, and what’s right for me might not be right for you.

As always, I’m more interested in writing about the emotional impact of living with chronic illness. One step up, two steps back has been my reality for many, many years, and learning to live life in a way that rarely resembles a straight line is an acquired skill.

Along those lines, do you want to know my reaction when my doctor informed me my mold markers were up and I needed to head down the chute step 2? I basically shrugged. Honestly, I think he was more upset than I was. Now, do not for a second mistake that as me being super chill. I’m not. But I’ve also been in this movie for a long time, and I know setbacks are built into the plot. In fact, they happen so often, I wouldn’t even call them plot twists. They are simply part of the narrative.

So, after spending the better part of two years clawing myself up to the step that would take me to the finish line, I will be spending an indeterminate amount of time trying to get back to the same place. It’s already been about six months, and recent lab work says I’m not there yet.

Is that discouraging? Of course. But what are my options? I can sit around complaining and feeling sorry for myself, or I can stay the course, and do the things I need to do. And I can do more. I can continue trying to live my life with as much joy and fulfillment as my health will allow on any given day. On good days I can volunteer. I can write. I can laugh with a friend or make a dinner with love for my husband. On bad days I can give gratitude I have the ability to rest when I need to.

Keeping this perspective is not easy. In fact, you could say it’s a skill I work on developing every day. When I’m not feeling well my automatic response is to get frustrated. Then I take a step back and check myself. I think about my problems relative to the world’s problems. I think about the people dealing with things far worse than what I’m dealing with. Even on my very worst days, I know there is somebody else having an even worse day. So, how can I possibly feel sorry for myself? When I’m able to get that perspective, my health problems don’t feel as consequential. I don’t feel as burdened. And I’m more able to see possibility.

Don’t get me wrong. Some days I want to put a steak knife in my eye and say f’ this. But really, what would that get me? Maybe a moment’s satisfaction, but no real peace. Yes, I’ve been at this a long time and I’m not where I want to be. Yes, I’m having a setback. But I’ve been here before and I know setbacks are only temporary. What’s lasting are the coping skills this (and all my setbacks) help me develop. And let’s face it. You don’t have to be in a health situation to find yourself at the bottom of one of life’s chutes. Setbacks are everywhere, so I count myself lucky I’ve learned how to face them.

This May Have Done Something.

Well, guys, I’m feeling pretty cocky today. Yes, I tolerated one spray of Stevia in my nose. Living large now. Ha. (If you don’t know what I’m talking about, check out my previous post).

If you’ve been reading along, you know I’ve had a mold relapse that includes the settling of a difficult to treat mold colony, called MARCoNS in my nasal passages. For people who actually tolerate medication, this colony is eradicated via a prescription nasal spray. People like me who get sick from even being in the vicinity of medication attempt to treat it with a nose spray called Xlear, which is basically Stevia.

Well, one single spray has been putting me down in a major way. My doctor thinks it’s because mold illness has thrown my immune system out of wack, and recommended high dose vitamin C infusions to calm it down.

I’ve done these infusions in the past and haven’t noticed a big difference in the way I feel. Given that, and the fact they are expensive and time consuming, I put them on the back burner.

However, replaying the tape, we realized I was doing the infusions the last time I was being treated for MARCoNS. During that time, I was tolerating 8 sprays of Xlear per day. So now, my doctor is wondering if the infusions were actually doing something in the background even though I wasn’t feeling much of anything.

Who knows for sure? At any rate, I had been sitting on my hands doing nothing to deal with MARCoNS, and I was feeling terrible, so I figured I’d give infusions another try. I didn’t have much to lose save a few hours and a few bucks. Ok, many bucks, but desperate times…..

That was yesterday afternoon. Then I got brave and decided to take one spray of Xlear before bed.

Low and behold, I woke up feeling the best I have in weeks. The Xlear didn’t make me sick, my brain feels more clear and my fatigue is improved, along with my overall outlook on life. Feeling a little better makes me realize just how horribly I’ve been feeling.

I’m pretty sure this is not a placebo effect, as I didn’t have much faith the infusion would do much for me based on past experience. I also know this is not an overnight cure and isn’t likely to last. (BTW, that’s not pessimism, it’s just the reality of knowing how life with chronic illness goes. Good days. Bad days. Wash. Rinse. Repeat).

I’m tempted to try two sprays of Xlear tonight, but I don’t want to push it. Experience tells me to keep it slow and steady. I’m in a hurry to get this MARCoNS infection in the rearview, but I also know this is one of those situations where I need to slow down to speed up. It’s annoying, but sometimes it’s the only way.

So, one spray tonight. Then we will see. I need to work my way back up to eight sprays per day, so I have a ways to go.

I’ll get there.

P.S. If you are wondering about my infusion: The prescription my doctor ordered is:

15 Grams Vitamin C, 2000 mg Glutathione, B vitamins, calcium, magnesium.

It goes without saying (although I seem to be saying it), I am not a medical professional and this isn’t medical advice. My doctor says this is right for me at this time, but if you think IV infusions could help you, please consult with your doctror.