I stood in my closet this morning, looking around as though I’d never been there. I couldn’t remember what I was doing, why, or what I should do next. So I stood still, waiting for it to come to me. Moments before I had been violently panting like a wild animal, bent over in pain and hugging my own body. I’d simply gone upstairs to get dressed for the day. But just as it does every day of my life in varying degrees, my illness reminded me who was in charge.
Tears welled up. That happens a lot, too. I don’t always have words anymore when I want to express what I’m feeling so my soul expresses it for me. I forget. A lot.
It’s Not Fibromyalgia
I was first diagnosed with Fibromyalgia in my early 30s by a young doctor who had clearly just learned the word on a sleepover at Junior Doctor Camp.
“You will grow weaker and weaker until finally your muscles atrophy. Your lifespan will be drastically shortened, and you’ll live out your final years wheelchair bound.”
Over the years I would experience sporadic periods of improvement and so I’d decided that Fibromyalgia was a bullshit diagnosis for me, and I damn sure didn’t have it.
Then I’d get really sick again.
My arms and legs go numb, almost always both at the same time but sometimes not. Either way, I fall down, bump into things, lose my balance. I can’t always tell where my foot is hitting, and when that happens you would think that our floors are made of chewed up bubble gum.
My joints stiffen so severely that my ankles don’t want to bend and my elbows always feel like someone hit them with a hammer while I slept.
I move like Frankenstein, only not as gracefully.
My muscles ache down to the bone in a way that feels like I am always battling influenza. It never stops. Ever.
But, by far the worst thing I’ve been living with for so long is extreme fatigue.
I’ve thought so often about what word I could possibly use to describe what it feels like, and I’ve always come up empty. All I can tell you is the kind of fatigue I live with every day is what I believe it must feel like to die.
When it’s very bad, doctors notice a palsy that comes over my face, and I have trouble even standing. I can’t rest enough to recover. I say it’s like someone is embalming me.
That can happen whether I am sitting in a chair with my feet up, or it can happen after I’ve played with my grandmonkeys. It doesn’t matter what I do. It’s always there.
I’ve said to every doctor I’ve seen, “I know that I will not live much longer. I’m dying.” I’ve known that for a long time. In years past I’d have bursts of weeks or months of energy that would allow me to behave normally. But, I always knew I was dying.
In the past three years, I’ve really felt my life slipping away. There have been almost no bursts of energy or good days – just me waiting to go to sleep and not wake up.
I figured that in my autopsy results they’d discover what was really wrong with me and “the world” would know I wasn’t crazy. Well, at least as it pertains to my health.
Across decades I’ve been seen by new doctors, and with each came mounds of new medical bills. “You are presenting like you have MS,” they’d all say, and then after the same battery of tests came the same diagnosis.
Fibromyalgia and Chronic Fatigue Syndrome.
“I don’t believe that either of those is a diagnosis I trust,” I’d say to them. “You are labeling me with those words because I am a woman, and because you don’t know what else to do with me.”
Want to piss off a doctor? Tell them you think they don’t know what they’re talking about. One particularly cocky son-of-a-bitch said to me, “You seem like you’d rather I’d have said you have MS.”
I know people who suffer unspeakably with Multiple Sclerosis. It’s vicious. But, yes. Sometimes I’d have taken the diagnosis of that horrific disease if only to have a “real thing” that explains why I so often can’t walk the ten feet from my recliner to the closest bathroom without holding onto something.
People believe you when you say you have MS. They understand (as best they can), that you’re not well and that you’re not a liar who is seeking attention.
It’s not the same mindset with regard to Fibro and CFS. Even though they are awful, hellish illnesses, people can be absolute assholes.
I remember someone I deeply respect who suddenly made a proclamation on Facebook about women and Fibromyalgia. Go on a diet, get some exercise and grow up pretty much sums up the sentiment.
There was no way I could tell people how sick I’ve been for fear they’d think of me as someone who wasn’t trying hard enough to be healthy, or worse, have them think it was all in my head.
Just to be sure, I went to see a psychiatrist. “Sher, you aren’t crazy. This isn’t in your head,” he said. To his credit, he also said, “I could prescribe Lyrica for you, but if I do that it’s the same as saying I believe what you’ve been told about what’s going on and I don’t. You have to keep pushing until you get to the person who can help you.”
Well-meaning close friends and not so well-meaning relatives had more to say when I would take them into my confidence about how unwell I was. To be fair, there is only one person who knows how bad I am. Some people in my life know a little, and some a little more, but no one knows the extent of just how damn bad it’s been beyond my partner.
What People Said to Me
You need to cut out gluten. You need to cut out sugar. You need to push through it. You need to exercise. You should pray. You need to try harder to force yourself to do things that are uncomfortable. My friend knows someone who knows someone who has Fibromyalgia and they are living their life, not laying around letting it happen.
And the worst things that have been said? The things that I can’t get out of my head and that bring me to tears even as I write?
“Are you planning on being sick next month?”
“Seriously? Don’t tell me you’re sick again. Really? It’s funny how you’re sick when I need something from you.”
Finally, a Diagnosis
An acquaintance dropped me a note one day that encouraged me to see an infectious disease doc here in the Midwest. A close family member of hers was made healthier by this man and she felt I should at least see him. It took months to get in, and I was profoundly skeptical.
The day came and I brought my partner with me to help me express what was happening, ask smart questions, and remember it all. When you lose your words and you forget things the way I do, you stop going to appointments alone. You stop going anywhere alone.
When he walked in, I knew right away something was different. He told me he was allowing two hours for our visit. I’d never had more than minutes with any doctor. He asked me questions about my current life and my past. In many cases, before I could answer he’d tell me what he suspected my answer was going to be. He was always right.
He explained his research into Fibromyalgia and Chronic Fatigue Syndromeand how it had become his driving passion for many, many years. He spoke to us about his research, the two papers he’d published and the third on which he was currently working.
“I am 95% positive, Sher, that when we test your urine you will be positive for mycotoxins – black mold.”
In my life, no doctor has made such a bold statement. No physician of any kind had ever before been so confident to use such language BEFORE tests.
“It’s with good reason that you tell me you know you are dying. That’s exactly what is happening. The mycotoxins are killing you at a cellular level.”
And, then he said two little sentences that changed everything.
“I can help you. I will help you.”
I cried, and when at the end of our time together he got up to leave he opened his arms wide to me. “Around here, we give hugs.”
I came home and prayed that I’d be positive for black mold. There’s a prayer I never imagined.
When the tests came back, about two weeks, I received a copy of my results. There it was in black and white. Black Mold. Mycotoxins. “You have a black mold factory living in your sinus cavity, Sher,” the doctor said.
It could have begun as a very young girl in the South. It could have happened all the years I lived in Kentucky. It could have been in Germany. It definitely could have been made worse again by all the flooding and old homes in Kansas.
“You don’t have to be living in a home with black mold on the walls to have this happen to you,” he said.
That’s been several weeks ago now, and every day I take the treatment he’s prescribed. It amounts to inhaling a drug to kill the mold. There is no way to know how long it will take, but I don’t care. If it takes a year I’ll do it every day and wait for this to be over.
The only side effects I’m currently having are that I’m so nauseous almost all the time now, and the fatigue has gotten even worse… if you can imagine such a thing.
I’m waiting on a call from his nurse right now about those things, but I’ve told myself the nausea is from the treatment running down my throat to my stomach.
And the worsening fatigue? Well, I used to tell my babies that when your body is working hard to make you well, you have to rest because it takes so much energy for healing. There is a war inside my body now and I’m just going to have to do the best I can to wait it out.
At least we know what the hell this invisible, torturous monster is and there is hope now. I want to be healthy again. I want to take my grandmonkeys on outings. I want to run.
I want to drink coffee in Portland, and sleep in a treehouse in New England, and drink great wine with friends in Chicago, and eat the best pizza in New York, and zip line in some place lush and warm.
I want to be me again.
I have two incredibly loving and supportive children and a man in my corner who says things like, “I’d rather have a life with you – even when you’re not well – than a life without you. No question.”
Can’t quit now. I’m three feet from sunshine.
If you’re wondering about black mold poisoning, I’ll leave you with the following information:
Black Mold Symptoms
Please note that this is an exhaustive list. You do not have to have every single symptom to have a mold-related illness.
- Abdominal pain
- Aches and pains
- Aggression and other personality changes
- Bleeding gums
- Bleeding in the brain
- Bleeding tendency
- Blood not clotting properly
- Blurry vision and vision worsening
- Bone marrow disruption
- Brain fog
- Burning sensation in the mouth
- Chest pain
- Chronic fatigue
- Cold or flu type symptoms or recurring colds
- Crawling skin
- Damage to heart
- Difficulty breathing
- Difficulty concentrating and paying attention
- Eye damage
- Eye inflammation and soreness
- Hair loss
- Hearing loss
- Heart inflammation
- Hemorrhage – internal bleeding
- Impaired learning ability
- Infections reoccurring
- Irregular heartbeat
- Itchy nose
- Jaundice (yellowing of the eyes & skin)
- Joint pain
- Joint stiffness
- Liver disease
- Low blood pressure
- Memory loss and memory problems
- Muscle pain
- Nose bleeds
- Pulmonary edema
- Pulmonary hemorrhage
- Red or bloodshot eyes
- Runny nose
- Sexual dysfunction
- Shortened attention span
- Slowed reflexes
- Sore throat
- Stuffy, blocked nose
- Vomiting up blood
- Weight loss, anorexia
I don’t respond to requests to chat about this illness because: 1) I get so many requests, I can’t possibly answer them all and, 2) I get my fair share of hate about this post and I won’t give that kind of thing any energy. Women are sometimes angry with me because they feel I’m not taking fibro seriously. (I do.)
My hope is that you feel better very soon. My heart hurts for each of you who are suffering.
Read what I’ve shared, talk to your doctor, and more than anything, KEEP PUSHING FOR ANSWERS. I want you to feel as good as I do today.