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Mystery Symptoms

How Spoonies REALLY Feel About the Word “Cure” (And What Words Would Be Better Received Instead)

By | Autoimmune Disease, Chronic Pain, Featured Posts, Guest Posts, Mystery Symptoms | No Comments

Note: This insightful guest post was written for I Told You I Was Sick by Mary Gutierrez of www.healthyeatingexperts.com. She had asked me if she could write a guest post, and, after looking at some of her articles (which mention the word ‘cure’) I asked if she would write a post about why the word ‘cure’ might be offensive to some people with chronic illness (spoonies). She readily agreed, and this piece is above and beyond my expectations. Thank you so much, Mary!

Disclaimer: These quotes, collected and arranged by Mary Gutierrez, do not necessarily reflect the opinion of I Told You I Was Sick. They are simply posted as written by their original and respective authors, and those individuals have chosen to remain anonymous. (All photos are stock photos for the purposes of illustrating the emotion of the quotes. They are not images of the people quoted.)

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Is Toxic Mold Causing Your Mystery Symptoms?

By | Autoimmune Disease, Chronic Pain, Mystery Symptoms | 2 Comments

Article originally published by The Best Years In Life

 

Do you live with chronic allergies, unexplained pain, and debilitating fatigue? Millions struggle with mystery symptoms their doctors can make no sense of. If you’re one of them, toxic mold could be the hidden cause!

 

The most common types of mold include:

  • Cladosporium
  • Penicillium
  • Alternaria
  • Aspergillus
  • Stachybotrys chartarum and Stachybotrys chlorohalonata (Black molds)

 

Black molds are the most dangerous to your health and are commonly found in water-damaged areas of buildings and in wet basements. Black molds contain neurotoxins that have been linked to serious, long-term neurological dysfunction.

 

In this article, I will show you the most common symptoms of mold sensitivity. In the second article, I will show you where to find mold lurking in your home. In the last article, I will show you how to get rid of toxic mold naturally.

 

Let’s get started by looking at the 10 most common symptoms of mold sensitivity:

 

1. Numbness and tingling

 

 

The neurotoxins produced by mold can cause numbness and tingling in your extremities. If you’ve ever had a foot “fall asleep” due to sitting on it wrong, you know how strange and uncomfortable it feels when the blood rushes back. If you’re being affected by toxic mold, the numbness and tingling you’re feeling could be a warning sign of neurological damage.

 

Research shows that individuals with chronic toxic mold exposure are vulnerable to vitamin B12 deficiency. Your body needs vitamin B12 to make DNA, nerves, and blood cells. If your body does not have enough of this critical nutrient, it can cause serious neurological and mental impairment.

 

According to a case report published in the French journal, Encephale, patients with vitamin B12 deficiency can show signs of depression, mania, and psychosis.

 

2. Upper respiratory problems

 

 

If you’re prone to sinus infections, excessive mucus in your throat, have a dry and hacking cough, or experience tightness in your chest, you may have an allergy to mold.

 

According to the CDC, the Institute of Medicine (IOM) found evidence that indoor mold exposure can cause upper respiratory problems for those susceptible to asthma. Exposure to mold has also been linked to respiratory illness in otherwise healthy children.

 

3. Learning and memory problems

 

 

Brain fog, memory problems, and difficulty concentrating are so common, many chalk these symptoms up to stress, lack of sleep, or age. However, they could also be a sign of toxic mold exposure.

 

In a 2003 study conducted by the Environmental Health Center-Dallas, nervous system challenges were observed in every single study participant exposed to mold. That’s 100 out of 100. A significant portion of the participants who were exposed to mold also presented with abnormalities in their brain SPECT scans.

 

4. Blurry vision

 

 

When black mold mycotoxins come into contact with your eyes, they kill the cells within, which can lead to inflammation, injury, and vision problems.

 

5. Light sensitivity

 

 

Light sensitivity, also known as ‘photophobia’, is linked to a malfunction of the nervous system.

 

Warning: If any of your senses are more sensitive than you’re used to (lights are too bright, sound is too loud, touch is irritating), it could be a sign that toxic mold is slowly destroying your nervous system!

 

6. Autoimmune disease

 

 

If you’ve been diagnosed with any type of autoimmune disease, it is critical that you check your home and work surroundings for mold. According to the American Medical Association Journal of Ethics, molds and mycotoxins have been linked to the development of chronic fatigue syndrome and fibromyalgia.

 

7. Recurring headaches

 

 

If you’re sensitive to mold, your sinuses can become chronically inflamed and congested, leading to recurring headaches that concentrate in the forehead and below the eyes.

 

Furthermore, toxic mold may be what’s causing your migraine headaches. Research suggests that immune system cells sensitive to mold will release chemicals that cause the blood vessels in your head to swell, triggering a migraine.

 

8. Skin rash

 

 

Recurrent skin rash is another telltale sign of mold sensitivity. When you come into physical contact with mold, you develop histamine bodies as a defense mechanism.

 

The most common way this occurs is during yard work when you’re exposed to wet leaves and dirt. The rash usually originates at the point of contact and spreads from there.

 

9. Muscle and joint pain

 

 

Research shows that the joint pain caused by long-term mold exposure is nearly identical to the pain caused by rheumatoid arthritis or fibromyalgia. This can lead to a misdiagnosis and a prescription for painkillers.

 

As long as you remain in the mold-contaminated environment, your muscle and joint pain will persist. Meanwhile, your body will build up a tolerance to pain medication and, over time, the drugs won’t work as well.

 

Plus, the source of the problem is still right there, lurking silently in your environment, making you sicker and weaker by the day.

 

10. Fatigue

 

 

There are dozens of reasons you might feel exhausted all the time. One of them is long-term toxic mold exposure. If you inhale and/or come into contact with mold on a regular basis, your immune system will be in a constant state of “fight or flight”.

 

Over time, this non-stop immune system response can lead to autoimmune disease and chronic fatigue.

 

If sensitivity to mold is what’s causing your mystery symptoms, you’re actually in luck. Now, all we have to do to get your health back on track is figure out where it is and get rid of it!

 

Head on over to The Best Years In Life to read the second and third articles in this 3-part series.

 

Read part 2 of 3: “Top Warning Signs of Mold in Your Home”

 

Read part 3 of 3: “How to Get Rid of Mold Naturally”

 

 

 


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How to Handle Chronic Illness When You’re Newly Diagnosed – Advice from Veteran Spoonies

By | Autoimmune Disease, Chronic Pain, Mystery Symptoms | No Comments

I have a chronic illness. Now what?”

 

I’ve been spending a ton of time on Instagram lately, connecting with the amazing spoonie community there. I often ask questions to increase engagement, and I’ve found a veritable treasure trove of information that I can’t wait to share with you every week!

 

A few months ago, I asked the question:

 

“What’s one piece of advice you would give to a new spoonie?”

 

Below are the helpful, well-thought-out answers I received.

 

1. Allow yourself to mourn your former life.

 

One of the most important things you can do early on in your diagnosis is take the time to mourn your former life.

 

Learning that you have a chronic illness and that you may not be able to accomplish the same goals you set for yourself years ago can be as startling and painful as learning of a sudden death.

 

Like mourning the loss of a loved one, you will go through the usual grieving stages:

 

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

 

You don’t have to go through this process alone. There are support groups online and in person that can help. You might also consider talking with a professional therapist during this critical time.

 

2. Connect with other people living with similar chronic illnesses.

 

 

If you don’t know it yet, there is a huge, and I mean HUGE chronic illness community online. Just type the word ‘spoonie’ into any search engine or look up the hashtag #spoonie on social media accounts.

 

Making connections with those who are living with similar chronic illnesses offers you a deeper level of support than you can get from someone in perfect health, no matter how well-intended that person may be.

 

3. Change your mindset and make new goals surrounding that mindset.

 

 

Another important thing to remember as a newly diagnosed spoonie is that there will be a new normal to adjust to. Remember, this is not an end to your life, this is a detour. This means you can still accomplish goals and fulfill your heart’s desires, you’ll just have to blaze a new trail to those goals and desires.

 

4. Keep track of physical and emotional changes via journal or app.

 

 

Fatigue, brain fog, and pain can make it difficult to keep a mental note of how you feel on a daily basis. Keep a journal or download an app to keep track of your flares, food triggers, emotions, etc.

 

As you get to know your body, you’ll have a better idea of what makes you feel better, what makes you feel worse, when you have bursts of energy, and when you need to take a nap!

 

I highly recommend Daylio. It’s a free app that I’ve been using for months, and, with my incredibly poor memory, it’s been invaluable to me.

 

5. Don’t push your friends and family away.

 

 

It’s very common for newly-diagnosed spoonies to push everyone away. I completely understand. I did the exact same thing. As a matter of fact, I still do. I isolate to keep my stability, deal with sensory overload (I’m on the autism spectrum), and “protect” others from the symptoms of my chronic illnesses when they get particularly bad.

 

To me, it’s as natural as breathing, so to advise you not to push your friends and family away goes against my own natural instincts. However, it’s very good advice that was given to me by one of my amazing linewalkers on Instagram.

 

True, friends and family may not fully understand what you’re going through or how you’re feeling, but they are your biggest supporters. Plus, and this is an important one, the more time you spend with them, the more likely there are to feel connected to you and become familiar with the symptoms of your illness.

 

It’s more difficult for someone to claim you’re “making it up” when they physically see what you’re going through on a regular basis.

 

6. Learn to say “No” without explaining yourself.

 

 

“No” is the most important word a person with a chronic illness can use. If you’re the type who is accustomed to taking on too much, it may be very difficult to delegate tasks, trust others, and say “no” to those you care about.

 

In the long run, though, saying “yes” to all the things you used to will only bite you in the butt, because you might not be able to complete the task as requested (or even remember to do it), and then you’ll feel guilty, exhausted, and maybe even resentful towards the people who asked.

 

You don’t have to explain yourself all the time, either. A simple, “I’m sorry, I can’t do that” should suffice.

 

People may be irritated or offended at first, but if they know you have a chronic illness and they know you as a person, they’ll adjust.

 

7. Research your own chronic illness.

 

 

I can’t stress this one enough. Research your own illness! Dealing with the conventional medical community can be like navigating a minefield. You have to be informed and on guard.

 

Most conventional doctors are not taught nutrition and the mind-body connection. They also have a rather horrible habit of downplaying symptoms in patients with chronic illness, especially women.

 

So, stay up to date, be informed, and be your own best advocate!

 

Also, if you ever have a doctor that takes issue with you doing your own research, find another doctor. That’s a sign of egotism on their part, and that’s the last thing you need when you’re at your most vulnerable.

 

8. Be more mindful and in the moment.

 

 

Your life has changed, and, while that can be difficult to adjust to, it will be easier to handle if you stay mindful and live in the moment.

 

For example, instead of trying to figure out how you’re going to have the energy to go to a wedding in three months, focus your attention on just the next three days.

 

If necessary, the next three hours or three minutes, even. Breaking life down into bite-sized chunks is an excellent way to reduce anxiety and feelings of overwhelm.

 

Also, instead of thinking, “When I get better, I will…” say, “On a day I feel better, I will…”

 

This small change in your thinking can help you feel more motivated and positive.

 

9. Rest and pace yourself even when it’s hard.

 

 

Ah, pacing. What’s that? If you’re anything like me, you go and go and go until you burn out and end up in bed for days. Unless you’re on an actual deadline, force yourself to take breaks in between activities.

 

For example:

 

  • Work on a project, take a break (rest, meditate, nap, watch a movie), and then go back to your project.
  • Buy your groceries one day, cook the next.
  • Write an article in the morning, edit it at night.

 

10. Appreciate the little things.

 

 

When you’re living in a 9 to 5 world, trying to balance career, family, and a social life, it can be hard to remember to appreciate the little things.

 

This is one of the unexpected advantages of living with a chronic illness: You have now transitioned from a typical human pace to nature’s pace.

 

Raindrops, flowers, insects, squirrels, the scent of a candle, the feel of your pet’s fur, and the delicious warmth of sinking into a hot bath—Those are all yours now, and they are all precious.

 

11. Put yourself first.

 

 

When you’re newly diagnosed with a chronic illness, it can be very difficult to put yourself first, especially if you’re not used to it.

 

Remember, your abilities have changed. Expecting that you’ll be able to go at the same pace you used to, helping everyone with everything, and taking on task after task is not only unrealistic, it’s bad for your health.

 

Put yourself first. It may sound selfish, but it isn’t. Recharging your own batteries so that you have enough energy for yourself and others is one of the best things you can do for yourself and those who count on you.

 

12. Have an advocate by your side.

 

 

Whenever possible, take another person with you as an advocate and support. Medical staff are far less likely to be dismissive or take advantage of their patients when there’s someone else around.

 

I know this sounds scary, but some doctors are complete and total jerks. You need to be aware of this and protect yourself whenever necessary.

 

These are some of the things I wish I’d known when I was diagnosed in my early 20s. It would have saved me a LOT of grief!

 

What about you? What advice would you give to someone who is newly diagnosed with a chronic illness? What is the best advice you’ve received?

 

Share in the comments below!

 


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