It’s not Fibromyalgia. Most likely, you’re not aware of it.

It’s not Fibromyalgia. Most likely, you’re not aware of it.

It’s not Fibromyalgia This morning, I was standing in my bedroom, looking around as if I had never been there. I couldn’t remember what I was doing, why, or what I was supposed to do next. So I was still waiting for it to come to me. Moments before I was frantically panting like a wild animal, bent over in agony and embracing my own head. I should probably have gone upstairs to get ready for the day, but just as it does every day of my life to varying degrees, my disease reminded me of who was in charge.

Tears have gone up. That’s also going to happen a lot. When I want to convey how I feel and my soul reveals it to me, I don’t always have words anymore. I forget. There’s a lot.

It’s not Fibromyalgia

In my early 30s, I was first diagnosed with fibromyalgia by a young doctor who had only just heard the term in a Junior Doctor’s Camp sleepover.

“You’re going to grow weaker and weaker until your muscles are atrophied. Your life span will be drastically shortened, and you’re going to live out your final years of wheelchair bound. “Over the years I’d experience sporadic periods of improvement, so I’d have decided that fibromyalgia was a diagnosis of bullshit, and I guess I didn’t.

Once again I would get really sick.

My Symptoms are

My arms and legs go numb, almost always at the same time but sometimes not at the same time. I’m falling down, bumping into things, losing my balance anyway. I can’t always say where my foot falls, and when that happens you’d think our floors are made of bubble gum.

My knees are so tense that my ankles do not want to move and my elbows still feel like someone is striking them with a hammer while I was sleeping.

I’m running like Frankenstein, not so graciously.

In a way that feels like I’m still fighting influenza, my muscles ache down to the bone. It’s never going to stop. Ever.

But the worst thing I’ve lived with for so long, by far, is extreme fatigue. So often I’ve been thinking about what word I might use to describe what it feels like, and I’ve always been empty. All I can tell you is that kind of tiredness with which I live every day is how I imagine it has to feel like dying. Doctors notice a palsy that comes over my face when it’s very bad, and I even have trouble standing up. I can’t have enough rest to recover. I say it’s like someone embalms me. It can happen whether I’m sitting with my feet up in a chair, or it can happen after I’ve played with my grandmonkeys. What I do does not matter. There’s always this.

I told every doctor I saw, “I know I’m not going to live much longer. I’m dead. “For a long time, I knew that. I would have had weeks or months of energy bursts in the past years that would allow me to behave normally. But I knew I was always dying. I have really felt my life slipping away in the last three years. There were almost no power spikes or good days–just waiting for me to go to bed and not to wake up.

I thought they would find out what was really wrong with me in my autopsy results and “the world” would know I wasn’t mad. Well, at least as far as my health is concerned.

New doctors have seen me over the decades, and new medical bills have come with each. “You present as you have MS,” they would all say, and then the same diagnosis came after the same battery of tests.

Fibromyalgia and the condition of chronic fatigue.

“I don’t think either of them is a disease,” I would say. “Because I’m a girl, and because you don’t know what else to do with me,” you mark me with those words. Tell them that you don’t think they know what they’re talking about. An especially cocky son-of – a-bitch said to me, “You sound like I’d better say you’ve got MS.”

I know people who suffer from Multiple Sclerosis unspeakably. It’s rough. Yet, yes, yes. Sometimes I would have taken the diagnosis of that horrific disease if I had only a “real thing” which explained how I can’t walk from my recliner to the nearest bathroom so often without hanging on to something. Others believe you when you say you’ve got MS. They know that you’re not well (as best they can), and you’re not a fake who’s looking for attention.

In terms of Fibro and CFS, it is not the same mindset.

I remember someone who suddenly made a Facebook proclamation about women and fibromyalgia that I deeply respect. Going on a diet, doing some exercise, and growing up, it sums up the feeling. I couldn’t tell people how sick I was for fear that they would think of me as someone who wasn’t working hard enough to be safe, or worse, make them think it was all in my mind.

Well-meaning close friends and not so well-meaning relatives had to say more about how unwell I was when I would take them into my confidence. There’s just one person, to be fair, who knows how bad I am. Some people in my life know a little bit, some know a little bit more, but no one knows how damn bad it was beyond my partner.

What do people tell me?

Gluten must be left out. You have to cut sugar out. You have to force it through. You’ve got to exercise. You are supposed to pray. You have to try harder to push yourself to do uncomfortable things. My friend knows someone who knows someone who has fibromyalgia and does not lie around letting it happen.

And the worst stuff that was said? The stuff I can’t get out of my mind and that even as I write take me to tears?

“Did you intend to get sick next month?” “Seriously? Don’t tell me again that you’re sick. Really? How funny you are when I need something from you is how sick you are.

At last, diagnosis

One day, a friend of mine dropped a note that encouraged me to see a doc of infectious disease here in the Midwest. That man made a close family member of hers happier, so she thought that I should see him at least. Getting into it took months, and I was deeply skeptical.

The day came and I brought my partner to help me communicate what was going on, ask smart questions, and remember everything. You stop going to meetings alone when you lose your vocabulary and you miss things the way I do. You’re not going out on your own.

I knew immediately that something was different when he came in. He told me that he authorized our visit for two hours. I would never have had any doctor for more than minutes. He asked me questions about my life today and about my past. In many instances he would ask me what he thought my answer would be before I could respond. He always had the right thing.

He explained his research on Fibromyalgia and Chronic Fatigue Syndrome and how for many, many years it had become his driving passion. He spoke to us about his research, the two articles he had written and the third paper he was working on at the moment.

“I’m 95% positive, Sher, that you’ll be positive for mycotoxins when we test your urine–black mold.” No doctor has made such a bold statement in my life. No doctor had ever been so confident in using such language BEFORE tests before.

“Well, you’re telling me you know you’re dying. That’s exactly what’s going on. At a cellular level, the mycotoxins kill you. “And then he said two small phrases that changed everything.

“I can be of assistance to you. I’m going to help you. “I cried, and when he got up to leave at the end of our time, he opened his arms wide to me.

I came home and prayed for the black mold to be positive. I never imagined a prayer.

When the tests returned, I received a copy of my results for about two weeks. It was black and white there. Black form. Mycotoxins. “You have a factory of black mold residing in your cavity of the sinus, Sher,” said the surgeon.

It might have started in the South as a very young girl. It might have happened all the years I’ve been living in Kentucky. In Germany, it might have been. All the flooding and old homes in Southeast Kansas would certainly have made it worse again.

“You don’t have to stay on the walls in a house with a black mold to make this happen to you,” he said.

It’s been a few weeks ago now, and I’m taking the routine medication he’s prescribed. To dissolve the mold, a toxin is inhaled. There’s no way to know how long it will take, but I don’t care about it. If it takes a year, I’m going to do it every day and wait until it’s over. The only side effects I’m having right now is that I’m so nauseous almost all the time now, and the tiredness has gotten even worse… If something like that can be pictured.

I’m waiting for a call from his nurse about these things right now, but I’ve told myself that the treatment runs down my throat to my stomach is nausea. And the tiredness that worsens? Okay, I used to tell my babies that it takes so much time to recover when your body works hard to make you okay. Now there’s a fight in my mind and I’m just going to have to do my best to wait for it.

At least we know what the hell is, and now there is hope, this invisible, torturous monster. I’d like to be safe again. I’d like to take out my grandmonkeys. I’d like to play. I want to drink coffee in Portland, and sleep in a New England tree house, and drink great wine with friends in Chicago, and eat the best New York pizza, and zipline somewhere lush and warm. I’d like to be myself again.

I have two extremely loving and supportive kids and a man in my corner who says things like, “I’d like to have life with you, even if you’re not well, rather than life without you. There’s no doubt.

Can’t leave now. I’m 3 meters from the sun.

I’m going to leave you with the following information if you’re wondering about black mold poisoning:

Symptoms of black mould

  • The pain of the abdomen
  • Aches and pains
  • Aggression and other changes in personality
  • Anxiety
  • Bleeding of gums
  • Bleeding in your brain
  • The Bleeding tendency
  • Blood does not clot properly
  • Blurry vision and worsening of vision
  • Disruption of bone marrow
  • The fog of brain
  • Burning sensation in your mouth
  • Chest  paining
  • Chronic fatigue;
  • Symptoms of cold or flu type or recurrent colds
  • Come on, Coma
  • Confusion of things
  • Coughing up
  • Skin Crawling
  • Damage to your heart
  • Death to Death
  • The Depression
  • Dermatitis is a
  • Diarrhea is a
  • Difficulty to breathe
  • Difficulty in concentrating and paying attention
  • Disorientation of
  • “Dizziness”
  • Sleepiness,
  • Damage to the eye
  • Inflammation of the eye and soreness
  • Fever’s
  • Loss of hair
  • Hallucinations for
  • Headaches:
  • Hearing of loss
  • Inflammation of the heart
  • Hemorrhage – internal bleeding
  • Immunosuppression:
  • Impaired learning capability
  • Infections that reoccurring
  • Irregular heart beats
  • Itchy’s nose
  • Jaundice (yellowing of the eyes and skin)
  • Joint pain of pain
  • The Joint stiffness
  • disease of the liver
  • Low blood pressure;
  • The Malaise
  • Loss of information and memory problems
  • Pain in your muscle
  • Nausea’s
  • Bleeds of the nose
  • Numbness;
  • Pulmonary edema;
  • Lung hemorrhage
  • Red eyes and bloodshot ears
  • Runny nose,
  • Seizure:
  • Sexual dysfunction:
  • Shaking up
  • Shock, Shock
  • Shortened of attention span
  • Reflexes slowed down
  • Sore throats
  • Stuffy, the nose is blocked
  • Tingling, man.
  • Having Trembling
  • Vomiting to
  • Blood Vomiting
  • Weakness:
  • Loss of weight, anorexia
  • Wheezing is

My hope is that you will soon feel better. Please know that while I can’t answer all the questions, I’m reading them all and my heart hurts every one of you who are suffering.

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