I stood in my closet this morning, looking all over the place as though I had never been there. I could not recall what I was doing, what, or why I would do next. So I stood numb, waiting for it to come to me. Moments before I had been viciously wheezing like a wild beast, focused over in pain and cuddling my own body.
I had just gone upstairs to get decent for the day, but just as it does each day of my life in changing degrees, my sickness reminded me who was in command. Tears welled up. That occurs very much, also. I do not all the time have words any longer when I want to express what I am feeling so my soul articulates it for me. I fail to recall. Very much.
It is Not Fibromyalgia
I was first analyzed with FM in my early thirty’s by a fresh doctor who had clearly just learned the word on a sleepover at Junior Doctor Camp. “You will produce feebler and fragile up until finally your muscles degenerate. Your life span will be significantly reduced, and you will live out your final years is wheelchair inevitable.” Over the years I would practice sporadic phases of development and so I had concluded that FM was a bullshit analysis, and I damn sure did not have it. Then I had become really sick once more.
My legs and arms go traumatized, nearly at all times both at the same time but occasionally not. Anyway, I tumble down, knock into things, and lose my balance. I ca not always tell where my foot is thrashing, and when that occurs you would think that our floors are made of chewed up bubble gum.
My joints harden so rigorously that my ankles do not want to turn and my elbows at all times feel like somebody hit them with a mallet while I slept. I move around like Frankenstein, merely not as elegantly. My muscles ache down to the bone in means that feels like I am continuously fighting flu. It by no means stops. Ever.
Then, by far the foulest thing I have been living with for so long is great exhaustion. I have assumed so frequently about what word I might perhaps use to define what it feels like, and I have every time come up blank. All I can tell you is the kind of exhaustion I live with daily is what I trust it must feel like to decease. When it is very bad, specialists notice a palsy that comes over my face, and I have worry even standing. I cannot rest sufficient to get better. I say it is like somebody is mummifying me. That can occur whether I am sitting in a chair with my feet up, or it can occur after I have played with my grand monkeys. It does not matter whatever I do. It is permanently there. I have said to every doctor I have ever seen, “I recognize that I won’t live much longer. I am dying.” I have recognized that for an extensive time.
In years past I had have bursts of weeks or months of drive that would let me to act ordinarily. However, every time I knew I was dying. In the past 3 years I have actually sensed my life tumbling away. There have been nearly no surges of drive or good days, just me waiting to go to sleep and not wake up. I believed that in my postmortem results they had find out what was actually wrong with me and “the world” would see I was not stupid.
Well, however as it relates to my health. Across years I have been seen by fresh doctors, and with each came piles of new medical bills. “You’re presenting like you have MS,” they had all say, and then when the same battery of examinations came the similar analysis.
Fibromyalgia and Chronic Fatigue Syndrome.
“I do not consider that any of those is an analysis,” I had say to them. “You’re tagging me with those words for the reason that I am a woman, and for the reason that you do not tell what else to do with me.” Want to piss off a doctor? Say to them that you think they do not tell what they are talking about. One chiefly doctor said to me, “You look like you had somewhat I had have said you have MS.” I know people who undergo inexpressibly with Numerous Sclerosis. It is malicious.L
Then again, yes. Occasionally I had have taken the analysis of that terrible sickness if only to have a “real stuff” that clarifies why I so often cannot walk the 10 feet from my lounger to the closest bathroom without holding onto something. People consider you when you say you have MS. They know (as superlative they can), that you are not fine and that you are not a deceiver who is looking for devotion. It is not the similar attitude with respect to Fibro and chronic fatigue syndrome.
I reminisce somebody I intensely admire who all of a sudden made an announcement on Facebook about women and FM. Go on a nutrition, get some workout and mature pretty much sums up the emotion. There was no way I might tell folks how sick I have been for distress they had think of me as someone who was not trying hard enough to be well, or poorer, have them think it was all in my head. Just to be certain, I went to see a psychoanalyst. “You are not crazy. This is not in your head,” he believed. To his praise he also said, “I can recommend Lyrica for you, however if I do that it is the same as saying I trust what you have been said about what is going on and I just don’t.
You have to keep assertive till you get to the one who can help you.” Well-intentioned close friends and not so well-meant relatives had more to say when I would take them into my self-assurance about how sick I was. To be just, there is only one person who recognizes how bad I am. Some people in my life see a bit, and some a little more, but not a single person knows the amount of just how damn bad it is been beyond my partner.
What People Say to Me
You have to take away gluten. You have to remove sugar. You have to push over it. You have to work out. You must pray. You have to effort tougher to force yourself to do stuffs that are painful. My friend knows somebody who knows somebody who has FM and they are alive, not resting around allowing it occur. And the wickedest things that have been said? The stuffs that I cannot get out of my head and that bring me to tears even as I write? “Are you preparing on being ill next month?” “Really? Do not tell me you are sick again. Seriously? It is funny how you are sick when I want something from you.”
Finally, a Diagnosis
An acquaintance dropped me a note one day that encouraged me to see a 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 Syndrome and 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,” 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 Southeast 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 zipline 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 life with you – even when you’re not well – than 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.
- Slowed reflexes
- Sore throat
- Stuffy, blocked nose
- Vomiting up blood
- Weight loss, anorexia
- Chest pain
- Chronic fatigue
- Cold or flu type symptoms or recurring colds
- Crawling skin
- Damage to heart
- Difficulty breathing
- Difficulty concentrating and paying attention
- 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
- Eye damage
- Eye inflammation and soreness
- Heart inflammation
- Hemorrhage – internal bleeding
- Impaired learning ability
- Infections reoccurring
- Hair loss
- Hearing loss
- 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