Chronic Wellness

Often those of us with chronic pain or illness decide to try modalities other than Western medicine. From diagnosis to treatment to long term care, there are a wide array of options to get input from experts who aren't our typical physicians. Today I'm talking about acupuncture.

Acupuncture is a practice of traditional Chinese medicine. By using the meridians that our qi follows and reading our pulse, a practitioner can impact our pain, energy, and internal organs with needles.

Typically after taking off some clothing thin needles are inserted into specific points ranging from the head and face, to the chest, arms, torso, or feet. Often the needles are left in place while the patient relaxes for 10-20 minutes.

I don't find the process painful. There might have been some discomfort upon insertion but that didn't last. It is typical that a series of treatments are recommended.

You might visit an acupuncturist for fibromyalgia, insomnia, and other pain conditions.

It is often not covered by insurance. However, you might be able to find people who charge on a sliding scale or who offer community treatment rooms.

I found acupuncture energizing and addressed my pain as well as offered me more energy.

Have you tried acupuncture? Did it benefit you?

I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

This is an FDA approved device that I've been using for about a year and a half. My migraines are daily. I use the Ceafaly daily both as a prevention and as a treatment for acute migraines.

There are 2 settings - one 20 minutes long for migraine prevention and one that's 1 hour long to interrupt migraines. You can buy the device at Cefaly.com. It retails for about $350. It has worked for me. It does reduce the intensity of migraines.

The device stimulates the vegus nerve. The stimulation is sometimes like vibration, sometimes a bit tickly/tingly, and can be felt from the eyebrows back to the crown of my head. The sensation is distracting and I find it to be soothing. It can sometimes help me get to sleep.

There are very few ways to address migraines with any consistency or success. There is nothing quite so inescapable as headache pain. I'm glad to have a solution that is not another pill.

Have you tried Cefaly? What are you using to treat your migraines?

I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

I have a good friend who was tested for POTS. POTS can cause changes in heartrate, blood pressure, and vertigo, all due to autonomic nervous system dysregulation. Her doctor booked her in for testing (which I didn't know they had available).

Within a day of the testing, she learned she didn't test positive for POTS. This is someone with other complex chronic pain and illnesses. The lack of that diagnosis still hit her hard. I could relate to that fragility and the invalidation that comes when I believe something is true and learn it isn't and the fear that arises around "What is true? Is this psychosomatic? What about these symptoms? Will anyone believe me?"

Invalidated: the root of the word "invalid" is the word used in French for disabled. When we aren't given support, recognition, support, other's recognition, support, when we aren't feeling seen, it is disabling.

Later, my friend saw her primary care physician. He said, "you are not your diagnosis." The lack of a diagnosis does not take away your symptoms. Just because our diagnostic tools have not yet caught up with your symptoms, you don't need to feel invalidated. If you are still searching, for your diagnosis -- I'm sorry. However, it doesn't change the fundamental truth that you know is happening. No one test can/should define you. We have one another. Let's support each other, help us feel seen and acknowledge the truth of our circumstances.

I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

Evusheld is the FDA approved, lab created, preventative monoclonal antibody therapy. In addition to the lab-created variety of monoclonal antibodies (Evusheld), there are biologically derived monoclonal antibodies which are spun from the blood from people who are sick with COVID and administered to those who are sick with COVID to help speed their recovery.

Evusheld is a protein that is designed to look like the proteins we make when we get sick. When injected, it makes a body like mine think we've already been sick which then keeps us from getting COVID. When I received it there were four vials injected as 2 shots in the buttocks every six months.

I was a candidate for Evusheld because I'm so immune suppressed because of the chemotherapy I'm taking. Evusheld had Emergency Use Authorization (EUA) from the FDA. However, at the end of January, that EUA was revoked. Evusheld has been proved ineffective against the current COVID variants.

Therefore, for the severely immunosuppressed, there is no longer a preventative option for avoiding COVID. The alternatives are now post-viral options Paxlovid and Molnupiravir, and monoclonal antibody treatment in the hospital or in urgent care clinics. Perhaps as this virus evolves and becomes less deadly we'll continue to see the threat decrease.

Have you taken Evusheld?

What factors in to your thinking about COVID these days?

I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

Music has been a life-long love affair. Being raised in the church, we always had magnificent choral directors and from the time I could talk I sang in choirs. Music is a through-line for most of my life. When I had pocket money I was buying records and tapes and I studied opera in college.

When I got sick and my lungs started to fail I quit music all together. Music was off the table for a few reasons: 1) when I don't have enough oxygen to talk, I don't have enough to sing, 2) meningitis brought migraines that crowded out what sound I could tolerate, and 3) for me, music is taps directly in to my heart and soul. Music short circuits all the nonsense and moves me in such potent ways. So when I'm at my most fragile, I have to carefully decide how much I can take. I don't have the oxygen to cry or dance.

When I am toiling with chronic pain and illness, I have to be thoughtful about when I can have a release. I can't just have it on the background or when I'm riding in the car. It is so unimaginable to me that I've broken up with music. I'm trying to find ways that I can let some music in.

Does music support you? Has music been troublesome for you? What peace have you made? What peace does it give you?

I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

Living with chronic pain and illness, make birthdays or the marking of time is fraught. Sometimes I haven't wanted to be alive another minute, another day and other times I'm really grateful to still be here. There other times I've been very close to death. I have a terminal illness and have been told I would die. I've thought a lot about my own death and dying. I am in some ways reconciled to my own death and am less afraid of my death than of prolonged/worsening suffering.

While I'm fulling indoctrinated into this culture's nonsense about the ways aging is unacceptable for women. I don't have a lot of baggage about turning 50 because (borrowing from the words of Harry Potter), I'm "the girl who lived!" I wasn't supposed to be here. I've blown through several expiration dates.

Today I am grateful to still be here. That's no small thing considering how depressed I've been recently. Part of what's brought me joy is my circle of friends. Not only did people take time out of their schedule and take time to quarantine before we went over, more than that I'm humbled that I have a few close friends.

Today I'm not rushing to get to the other side. And there will be days when I wish I wasn't here. Maybe you're feeling that today. It's difficult to find your reason to still be here. Most of us have been there.

Listening to a conversation today between Dr. Gabor Mate (When the Body Says No) and Prince Harry. We often talk about the kind of trauma that is born of the things that should not have happened and we often over look the kinds of things that should be present but aren't. And those are the kinds of things that are often absent in the lives of those of us with chronic pain and illness. This is the calculus of loss that we rarely do and others surely never do.

It's so difficult to maintain any relationships with chronic pain and illness. I am so very blessed.

I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

Last week, March 28th was Rare Disease Day. I have a rare disease called Antisynthetase Syndrome. It is diagnosed at about 1 in 100,000 people and affects more women than men. It is an immune-mediated disease that causes inflammation. It can effect a number of systems in the body. Most patients experience one of the inflammatory myopathies (muscle-wasting disease), polyarthritis, mechanic's hands (which is MUCH worse than it sounds), Renaud's syndrome, and interstitial lung disease. I have all of these autoimmune diseases (and more).

Part of what's so difficult about having a rare disease is that 1) your doctor may not have any other patients with this disease and, 2) pharmaceutical companies are never going to research and create drugs for our disease. There may be university studies about our diseases or features of our diseases. However, it is rare to get much information about quality of life, life expectancy, and questions about how to live well with a rare disease.

Rare Disease Day is here to raise awareness. As we talk about our rare disease others learn more about these uncommon illnesses. We can connect others to resources they may not know about. Do you have a rare disease? Tell us about it in the comments? We need to learn about what's impacting you!

I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

Those of us with compromised immune systems are prone to thrush. In video 373 I talk more about how we contract thrush and what it is. In this video I'm talking about what I do once I have thrush. Anything that is sugar or immediately converts to sugar will increase my experience of pain and how raw my mouth is. Things like rice, cracker, potatoes, bread, and other simple starches don't work.

I am a meat eater and I would find it difficult to eat an all vegetarian or vegan diet while having an outbreak. Dairy also feeds the yeast. It is helpful to increase your probiotics, you can do this by taking pills or capsules, or you can find kefir water. Then focus on protein: eggs, meat, nuts, fish -- like tuna or tuna salad. Vegetables that are low in sugar like the brassicas: broccoli, cauliflower, brussles sprouts, cabbage, and other leafy greens. I drink bone broth. Low sugar fruit perhaps, but I generally avoid them while I'm sick.

I want to find ways to clear the coating with acidity. In this way, apple cider vinegar and lemon juice are recommended. I tend to juice fresh lemons and ginger root as a concentrate and dilute the juice with water or sparkling water and drink it throughout. Often salt water, baking soda, lemon juice, or apple cider vinegar are recommended as swishes or gargles.

Do you get thrush? Have you found other things that work for you? What do you eat when you have thrush?

If you decide to eat sugary foods, swish or brush and then treat with your lozenges or rinse to treat the yeast. It does take 10-14 days to treat. I try to keep the rinse in my mouth for as long as possible 3-5 minutes. After your infection has passed, get a fresh toothbrush.

At the beginning of an infection I tend to crave sweets. That seems odd because yeast feeds on sugar. I tend to want ice cream, specifically.

I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

Thrush -- what is it? Who gets it? What's it all about? May you never have to experience it.

Thrush impacts people with compromised immune systems: people on chemotherapy, babies, the elderly. Thrush is an overgrowth of candida: yeast. It is a yeast infection of the mouth. This yeast is present all the time in our mouth, intestine, on our skin. However, when it is out of balance it can cause thrush. Antibiotics can cause this.

For me, my first symptom is a film or coating on my tongue that causes me to crave sweets and cold creamy things. Then I start craving acidic and carbonated things that seem like they would take away the coating on my tongue. As thrush progresses it causes a white growth on your tongue, tonsils, potentially on your throat and inside your cheeks. Then the remedy is prescription meds. The most common is lozenges or rinses that are used multiple times a day for 10-14 days. Alternately there are meds that treat yeast systemically.

The symptoms can range from mild and aggravating to irritating and painful. It can be difficult to figure out what to eat and it can be uncomfortable to eat. If you've recently recovered from thrush, get a new toothbrush. Generally, thrush is not easily contageous.

I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.

I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness is the presence of wholeness, then no matter what your disease status, we can work toward your wellness, your wholeness.

Whether or not you are ever "healthy" on paper, you can be well. Join me and others on the path back to wholeness at AnnetteLeonard.com. Whether you are a person experiencing chronic illness or are someone who loves or serves people with chronic illness I have great resources here on this channel or on my website for you.