I’m Beginning to Feel a Little More Like This Version of Myself.

This is from a long time ago. For reference, that’s my daughter, and she’s a junior in college now. I believe this is about a year before I got sick and everything unraveled.

I’m staring at this photo and thinking about what I didn’t know then about what was to come. I’m also thinking about how relatively unscathed I was then. Sure, I had experienced life’s ups and downs just like everybody else, but at that point, I was moving through life with relative ease. I was fit and healthy and fully alive. I laughed a lot. My GI tract still worked properly and I was not yet emotionally gutted.

I’m sure I enjoyed all that ease, but I probably didn’t savor it enough. I simply took it for granted that my life would continue on that same trajectory.

Right now, I’m thinking about how scary and dark it got inside my head when my health fell apart. And I’m thinking about how, when this photo was taken, my mind and body were blissfully free of all that darkness.

I’m just smiling. I was happy. My life was defined by living not by fighting to survive, as would soon be the case.

I have spent most of the past eleven years in survival mode, trying to overcome the devastating physical and emotional wreckage of chronic lyme disease and mold illness.

I’ve done my best to stay optimistic and hopeful. I tried hard every day to help myself heal. And at a certain point, I let go of the endgame and focused solely on my effort. Which is not the same as giving up. No. It’s a radical acceptance of what I can control and what I can’t. I can control my attitudes and my actions, but I can’t control what they do and don’t add up to.

Well guess what? After all these years, my efforts have added up to something. I’ve had periods where I’ve felt improvement, but they were always short lived. Now, for the first time, I have the confidence to say right out loud that I’m turning a corner. Unless you live with chronic illness, you have no way of comprehending what a bold statement that is. To finally have the conviction the light at the tunnel is not a train not something I’ve come by lightly.

How did this happen? The biggest thing that’s changed is the fact I’m finally fighting the totality of my problem. I’ve been sick for eleven years, but I’ve only known I have Lyme AND mold for about a year and a half. Which is another way of saying I’ve only been addressing part of my problem for most of the time I’ve been sick. (I’m not bitter about that, if you’re wondering. Yes, several doctors missed the mold, but it’s not like they did that on purpose. They did their best to help me).

As I replay the tape, I’ve discovered I’ve been living in houses with mold for most of my life, until very recently. You may recall, my doctor discovered I have a genetic defect that prevents my immune system from being very effective at clearing mold, so I’ve been collecting it all these years. He believes my body was somehow getting by until I suffered a bout of acute lyme which turned into chronic lyme, which lit the match for CIRS (mold illness), which set off a cascade of inflammation that had devastating consequences on my GI tract, resilience, brain function, and mental health.

So, that’s what happened. And that’s why I haven’t been able to recover in spite of years of copious interventions.

I finally started turning a corner when my husband doubled, no tripled down on making our house safe for me. Keeping a house mold safe requires tremendous diligence, and my husband continuously walks the perimeter making sure there is nothing in this house or our cars that will harm me.

My clean home, combined with adding new detox therapies like the infrared sauna and several supplements, and discontinuing treatments that were giving me intolerable side effects, have made a world of difference.

I’d say my energy has doubled over the past few months. My anxiety has decreased tremendously, and my GI symptoms have lessened, although there is still much work to do here.

I also still have work to do in the brain area as well. It’s still much more difficult for me to concentrate than it used to be, and I have much more difficulty assimilating new information than I used to. These are both very common symptoms of mold illness.

But here’s the most important thing. Aside from any symptom I may or may not be having, I have started to engage in life again. I’ve started making plans. I am laughing more, and my husband says my personality is returning.

In the past, I’d try to talk myself into engaging in life because I thought it might help me feel better. But here’s the thing. Now, I’m engaging in life because it seems like fun. I’m not forcing myself to do it. It’s just happening. And it’s happening because I’m feeling better.

In fact, in the past few weeks, three different people have told me I look and sound healthier and more energetic.

Am I anywhere close to the way I was in that photo? Absolutely not. But for the first time in so, so long, I can remember what it feels like to be that way.

And that’s a start. A blessed, blessed start.

Onward.

I Just Ordered This Bad Thing.

The mold remediation of our home is just about complete. All active mold has been removed and affected areas have been patched, drywalled, painted, etc. All air ducts have been cleaned, and the entire house has been fogged to kill any remaining mold in the air and on surfaces, furniture, etc. The only wall to wall carpet we had was on the stairs, and that has been removed.

Now we are entering phase two, which is remediation of our clothes, bedding, etc. This task felt incredibly daunting to us, to the point of paralysis. As I’ve mentioned in previous posts, when you have mold in your home, it does not remain isolated to the place where it’s visible. Invisible spores are released into the air and circulate throughout your home. Which means every single thing you own is touched by mold to a certain degree. If you are healthy, this probably isn’t too much of a problem, but if you suffer from mold illness, commonly referred to as CIRS (Chronic Inflammatory Response Syndrome), any mold is a problem and needs to leave.

Since I am tired most of the time and suffer from brain fog a lot of the time, I became overwhelmed and more or less shut down any time we discussed dealing with our stuff. And for this reason, we have been lax on this front. And when I say “we” I mean “me” because I led the charge on inaction.

Thankfully, my husband is a man of action, and he decided we needed to get over ourselves and figure this out. Also thankfully, by “we” he meant “him”, as he could see I wasn’t getting anywhere. He got a bone in his teeth and went deep on research and developed an action plan based on an evidence-based mold remediation protocol developed by Dr. Close. You can learn about about it here.

This is what we (ok, mostly my husband) are doing:

  1. Post-remediation, my husband ran diffusers with an essential oil blend called Combat Blend for 24 hours in each room of the house in order to catch anything the remediators might have missed, or anything still lingering in the air, which can happen after remediation. This would also kill any mold on drapes, furniture, etc. He did this while I was away, as there was a chance the oil could give me a bad detox reaction, which unfortunately, it did when I returned home. It was severe, but that’s a story for a different time. My husband did the homework, so you don’t have to. This is the best diffuser, and this is the essential oil. For you Young Living essential oil people, this is equivalent to Thieves Blend, but less expensive. My husband purchased the diffusers and essential oil from Diffuser World. Cheesy name, I know, but they are extremely knowledgable about essential oils and mold remediation, and are very familiar with Dr. Close’s protocol.
  2. We add one ounce of a product called EC3 Laundry Additive to every load of laundry. EC3 is natural, non-toxic, and kills mold.
  3. Once per month, we will use EC3 Mold Solution Concentrate to spray down anything that can’t be washed: drapes, area rugs, bedding, throw blankets, plush furniture, dry clean only clothing, etc. The diffusing covered most of this, but we will hit it with EC3 on an ongoing basis for prevention.
  4. We ordered this 100% organic, non-toxic mattress from a company called Avocado Green. I’ve never ordered a mattress in the mail, but it was rated number one by Consumer Reports, and there are literally thousands of very positive reviews on the website. Also, they have a very generous return policy — one year. This not an ad, by the way. Just sharing my rationale. I’m not going to lie, it was expensive by the time we added in the mattress pad, base, pillows, pillow covers, etc., but we decided it was worth it, as I spend a solid eight hours per day in bed. And we know our previous mattress has been in several houses with water damage (and therefore mold), so we decided it had to go.
  5. Since I was diagnosed with CIRS about a year ago, we have run air purifiers in every room of our home, and will continue to do so. There are many air purifiers in many price ranges. My husband researched this heavily, and settled on a brand called Blueair. We do the product line called Blue. You need different sizes based on the sizes of your rooms. My husband decided on Blueair because it got good ratings, and was middle of the road price-wise.
  6. My husband changes our air duct filters every 30 days whether they look dirty or not.
  7. We are going to institute an ongoing schedule for diffusing essential oils. Dr. Close recommends eight hours per room once a month, but we will need to figure out how to make that happen now that we know it makes me temporarily sick.

Ugh.

What a process, right? But for the first time since I was diagnosed, I feel like we have a handle on how to keep our environment safe for me, and I can only hope it leads to more healing than I’ve experienced in the past year, which frankly, hasn’t been that productive. More on that later.

In the meantime, I’m going to kick back and enjoy our clean home and air.

Mold Is Insidious.

We are currently doing a quarantine within a quarantine. We had to leave our house for two weeks while it got remediated for mold (see previous post). When researching for a rental home, I was looking for two things: sanitization, and the best chance of not having mold.

For the latter, I looked for a house on the newer side that did not have any wall to wall carpeting or drapes (they hang on to mold). I also asked the rental agent about any history of mold and/or water damage.

The house I landed on seemed to fit the bill. It is all wood floors with only a few area rugs. Blinds instead of drapes, and it got high marks for being clean as a whistle. Also, the rental agent assured me there had never been a mold problem.

You can never know for sure if mold is present, as it often is not visible and does not give off any odor. When we entered the house, it seemed fine as far as we could tell. We brought several air purifiers just in case, though.

I was feeling very crummy when we arrived here, most likely due to the new exposure at our house, and I was hoping a new, hopefully mold-free environment would help improve the way I felt. Unfortunately, I felt the same, maybe even worse.

About three days in, I was laying on my back practicing yoga in the master bedroom. I happened to turn my head to the side and that’s when I saw the above water damage stain on the master bath ceiling. I have no idea how long that stain has been there, but it’s safe to assume it led to mold, as mold follows water. Generally, it forms within 24 to 48 hours of water damage.

So, this house likely has mold.

Ugh.

And remember, I have a genetic defect that makes my immune system unable to “see” mold. So, if there is mold around, I’m absorbing it and am not eliminating it.

Yeah, I’m frustrated. Any mold I absorb adds to my toxic burden, which will make it harder to get well.

Some people with mold illness get so frustrated with trying to keep their environment safe, they literally resort to pitching a tent in their yard. Some people walk out of their houses with nothing but their credit cards and never look back. I’ve been tempted to do both, or to move into an RV, but I’m not quite that desperate. Yet.

On the bright/hopeful side, our house will be remediated by the end of the week, and I should finally be in a mold free environment for the first time since I was diagnosed with mold illness last summer.

This will not be an overnight fix for my health. In fact, I still face a very long road, but I’ve come to understand recovery is impossible if I am not in a safe environment. So, here we go with step one.

Wish me luck.

This is What My Brain Feels Like.

Lyme disease has not made me stupid. In fact, I am pretty sure I am just as intelligent as I was before I got sick.

However, lyme disease has made it incredibly difficult to access my intelligence.

Here’s the analogy. I know next to nothing about horse racing, but I did read Seabiscuit. In Seabiscuit, Laura Hillenbrand beautifully details a critical moment that occurs in every horse race. It’s the moment when the jockey determines it’s time to make a move. Hllenbrand describes it as asking the question of the horse. Are you ready to run?

When I want to do something that involves intellectual engagement, I’m basically asking the question to my brain. I’m asking if it’s ready, willing and able to work with me. And guess what? More often than not, the answer is not so much.

This is one of the many manifestations of the lyme related chronic fatigue I experience. I am so very tired. And when I try to engage my brain in something like writing this blog post, I have to fight through layers of brain inertia. When I reach for a thought, what I land on feels like a cloud of dead gray matter. Nothing happening. Nothing going on. The question falling on unwilling ears.

I have no idea what my IQ is, but I know I’m not a genius. I’m probably of average intelligence. But I’ve always felt I was blessed with a quick mind, and that’s my competitive advantage. I can very easily read a room or situation, connect dots, see a problem and formulate many possible solutions. When I was in advertising, I never thought I was the smartest person in the room, but I often believed I was the quickest, and that served me very well.

But now my brain doesn’t feel so quick. It’s like a car stuck in neutral. When I’m ready to drive, my brain isn’t. And on those occasions when I do get my brain into drive, I am often left mentally exhausted by the effort of engaging in whatever I engaged in.

Is this frustrating? Yes. Double yes. Makes me crazy. Is there much I can do about it? Not really sure. I’m doing everything I can to defeat my lyme and fatigue issues, but so far I’m not winning that battle.

In the absence of a cure, patience and self-kindness are the only remedies that feel plausible at this point, and I exercise those with abundance. I use my brain when I can, I rest it when I need to, and try not not get too whipped up about whatever is or isn’t happening brain-wise.

Do I like having to operate this way? Absolutely not. It’s very inefficient, unpredictable and non-productive. But I can howl at the wind all I want, and it’s not going to do a damn thing to help me concentrate on a day when my brain is encased in fog.

So I don’t howl. I don’t whine. I just treat myself with kindness, and wait for a better day.

It always comes.