Chronic Wellness

To see Arlene’s tai chi:

https://www.youtube.com/user/faulktaichi

To visit Arlene’s website:

https://arlenefaulk.com/

If you’re in the Chicago area and want to take classes:

https://faulktaichi.com/arlene-faulk/

My guest today is teacher and author Arlene Faulk. Arlene writes about her journey with MS and discovering the healing power of tai chi in her powerful new memoir Walking on Pins and Needles. In this episode we start back at the beginning of your symptoms, the first day of a rigorous management training program when she is just 22 years old. Under a tremendous amount of stress, she started to feel numbness and tingling in her legs.

What was happening? What was she feeling? As she tells her story, it’s clear she puts a lot of emphasis on not wanting to let others down. Where did that come from? These symptoms coincided with the birth of her first niece, yet she chose not to disclose anything about what was happening to her – why did she make that decision?

As she went through her first, difficult round of treatment, her brother tells her to “let her body be her guide.” How did that advice land?

Join us tomorrow for part two of this interview.

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.

WIN A COPY OF ARLENE’S BOOK

Here's how to enter:

1) Leave me a rating or review on whatever audio podcast platform you listen to.

2) Let me know you've done that by emailing me at [email protected] or leaving me a comment about it on YouTube so that you can be entered in to the drawing. If you have a preference about which book you'd like, let me know in your comment or email. (I’m also giving away a copy of Michael Murray’s My Pain Body Solution)

3) If you'd like to be entered multiple times you can also post about one (or both of the books) and tag me on Instagram @theAnnetteLeonard including tag of either @arlenefaulk or #mypainbodysolution, for up to two additional entries. The drawing is planned for 6/30

I'm recently back from seeing my team of specialists up in Seattle. I go up to UW several times a year to consult about my lung disease.

This trip I was able to consult with a rheumatologist who treats other patients with antisynthetase syndrome.

As you know I take Rituxan (Rituximab, Ritux) as an infusion for my autoimmune disease. Part of how it works is it kills and keeps B cells from maturing.

The COVID vaccine (and other MRNA vaccines) rely heavily on B cells to replicate and produce the autoantibodies that make the vaccines effective.

While I've had 4 COVID vaccines at this point, I've been told to understand that they likely have limited effectiveness because of the Rituxan treatments I receive in an ongoing way.

In Seattle, the consulting rheumatologist decided to test my blood for COVID antibodies to see what protection the vaccines have given me.

I was warned that the labs might be confusing to understand and therefore, he said, "if you Spike Ig number is less than 1000," you have way too little protection and you should get monoclonal antibody treatment.

When I read the labs the following day, my number was 5.7!!!!

That number is so low, it looks like I've never had a vaccine much less four.

I am, of course, a candidate for Evusheld, the monoclonal antibody treatment.

Are you on an immune modifying drug? If so, get your doctor to test your antibodies?

There are new ways to protect yourself.

Have you had Evusheld? Are you on Rituxan and been taking COVID vaccines?

Tell me about your experiences.

Book giveaways: I'll be having a drawing to give away two books. One is "My Pain Body Solution," by Michael J Murray, (https://greenleafbookgroup.com/titles/my-pain-body-solution) the other is "Walking on Pins and Needles," by Arlene Faulk (https://www.bookcellarinc.com/walking-pins-and-needles).

Here's how to enter:

1) Leave me a rating or review on whatever audio podcast platform you listen to.

2) Let me know you've done that by emailing me at [email protected] or leaving me a comment about it on YouTube so that you can be entered in to the drawing. If you have a preference about which book you'd like, let me know in your comment or email.

3) If you'd like to be entered multiple times you can also post about one (or both of the books) and tag me on Instagram @theAnnetteLeonard including tag of either @arlenefaulk or #mypainbodysolution, for up to two additional entries.

The drawing is planned for 6/30 for Arlene Faulk's book and 7/5 for Mike Murray's.

Thank you to those of you who have responded about this topic.

In recent conversations, I've talked with some folks about their application for disability and with someone else who is thinking about leaving work because of illness/disability.

At a time when managing the chaos of these diagnoses and their impacts: relationships ending, friendships changing, our bodies hurting, to also have our housing and finances also be jeopardized is terrifying.

One has to leave work in order to apply for SSD (social security disability) and more than 80% of applicants are turned down the first time they apply.

I expect that the government counts on people losing steam and not re-applying.

1) Research SSD Attorneys, they can help and they are not all created equal.

2) Many of you do not consider leaving work because of insurance. You may be right, but you may not be - engage the services of an insurance broker to get accurate information about your circumstances.

I have better insurance NOW with Medicare and a supplement, than I did with a County job and Cadillac insurance.

3) If you are still working and your condition is new or worsening, your employer is likely required to follow the ADA or Section 504 to accommodate you. This might enable you to stay in the workforce longer.

There are obvious and subtle ways that chronic illness impacts finances. I'd love to hear from you about the ways your finances have been affected by illness, pain, or disability.

Book giveaways: I'll be having a drawing to give away two books. One is "My Pain Body Solution," by Michael J Murray, (https://greenleafbookgroup.com/titles/my-pain-body-solution) the other is "Walking on Pins and Needles," by Arlene Faulk (https://www.bookcellarinc.com/walking-pins-and-needles). Here's how to enter:

1) Leave me a rating or review on whatever audio podcast platform you listen to.

2) Let me know you've done that by emailing me at [email protected] or leaving me a comment about it on YouTube so that you can be entered in to the drawing. If you have a preference about which book you'd like, let me know in your comment or email.

3) If you'd like to be entered multiple times you can also post about one (or both of the books) and tag me on Instagram including tag of either @arlenefaulk or #mypainbodysolution, for up to two additional entries.

The drawing is planned for Arlene's book on 6/30 and Mike's on 7/5.

This will be the first of a few installments about finances and chronic illness.

Poverty is both a cause and a result of chronic conditions.

More than half of the US has a chronic condition.

Thinking about my own experience and autoimmune disease, we carry a predisposition for these diseases, but they are often ignited by an illness, accident, injury or trauma. How much might poverty contribute this kind of disease expression?

Worse outcomes and death can be traced to poverty.

If my family and friends hadn't supported me financially, I would not still be living in this house.

I first got sick with mono. After I'd taken some time off work to recover, I still wasn't recovered.

The fatigue was so pervasive I had sit down to brush my teeth.

Fortunately, I had some insurance for short and long term disability.

On the day I received long term disability, I lost my health insurance. I could buy health insurance through COBRA at the price of more than our mortgage.

I wouldn't be eligible for Medicare for more than 2 years.

Our savings was outstripped by these hits to our income and expenses.

Family and friends have gotten us through. I might be bankrupt by now.

How do you support yourself with chronic illness or pain?

What have been the hurtles or obstacles?

What questions do you have about living with chronic conditions and managing our finances?

Book giveaways: I'll be having a drawing to give away two books. One is "My Pain Body Solution," by Michael J Murray, (https://greenleafbookgroup.com/titles/my-pain-body-solution) the other is "Walking on Pins and Needles," by Arlene Faulk (https://www.bookcellarinc.com/walking-pins-and-needles). Here's how to enter:

1) Leave me a rating or review on whatever audio podcast platform you listen to.

2) Let me know you've done that by emailing me at [email protected] or leaving me a comment about it on YouTube so that you can be entered in to the drawing. If you have a preference about which book you'd like, let me know in your comment or email.

3) If you'd like to be entered multiple times you can also post about one (or both of the books) and tag me on Instagram including tag of either @arlenefaulk or #mypainbodysolution, for up to two additional entries.

The drawing is planned for Arlene's book on 6/30 and Mike's book on 7/5

For my birthday a friend gave me an astrological reading.

During that conversation, I was told that I have the gift of processing but can sometimes get stuck in doing that.

She offered me the metaphor of a room with two doors. The one in front which represents the future is closed, the one behind me which is not quite closed, represents the past.

The "not quite closed," is indicative of my tendency to keep working, processing, and holding on to the past. However, if I would just open the door in front of me, the wind created by that change would close the door behind me.

The more actively I pursue what is in front of me, the better I can surrender and release the things behind me.

Of course, I think about how this relates to chronic pain and illness. It is difficult to let go of who I once was: what I looked like, who I was in the world, what I was capable of doing. It has also been hard to imagine a future for myself... What is next? What can be next?

Perhaps we should think in smaller terms. Maybe what's next is: listening to a whole podcast series, reading the complete works of an author, finish a whole coloring book.

This just has to be the next thing. Next week I'll text a friend. I'll menu plan instead of eating based on what's in the fridge when I'm desperately hungry.

How can I show up for myself so I can release myself from the things that have hooked me about the past?

Book giveaways: I'll be having a drawing to give away two books. One is "My Pain Body Solution," by Michael J Murray, (https://greenleafbookgroup.com/titles/my-pain-body-solution) the other is "Walking on Pins and Needles," by Arlene Faulk (https://www.bookcellarinc.com/walking-pins-and-needles).

Here's how to enter:

1) Leave me a rating or review on whatever audio podcast platform you listen to.

2) Let me know you've done that by emailing me at [email protected] or leaving me a comment about it on YouTube so that you can be entered in to the drawing. If you have a preference about which book you'd like, let me know in your comment or email.

3) If you'd like to be entered multiple times you can also post about one (or both of the books) and tag me on Instagram @theAnnetteLeonard including tag of either @arlenefaulk or #mypainbodysolution, for up to two additional entries.

The drawing is planned for 6/30 for Arlene Faulk's book and 7/5 for Mike Murray's

I'm feeling crummy today! I've just received my 4th dose of vaccine. I'm eligible because of being severely immunosuppressed/immunocompromised. I'm on a number of meds to suppress my immune system, one of them is an IV drug called Rituxan.

Rituxan works by killing and keeping B cells from maturing. This is a problem because B cells are the primary way that vaccines produce and "remember" the antibodies created by vaccines. There are numerous studies now demonstrating how ineffective the COVID vaccine is in people receiving Rituxan. One study said that it was "statistically insignificant for people to have received the vaccine"(or not) if on Rituxan, based on the fact that it gave no protection against the virus. Studies like these are incredibly disheartening.

As a person with serious lung disease, with mask mandates lifted, I'm scared.

We are all tired of this pandemic and it's demands upon us. I'm wearing this mask today because a member of my household was exposed to a sick coworker. When I venture out, I'm disheartened by how few people are choosing to wear masks now that they aren't required.

Remember those shop signs from the 80's "No shirt. No shoes. No service."? Well, we're all wearing shirts and shoes! What's one more (small) piece of cloth? Our lives are all touched by immune compromised folks, a kid who has cancer, someone on dialysis, an elderly person, and because we have proven that masks radically reduce the spread of COVID, what a generous and easy way to care for all of us. Today, where we are on the brink of WWIII and we are thinking "What can I do?" "How can I make change?"

You can wear a mask. If you are healthy and know others for whom masking is a choice, encourage them to do the same.

Episode 345: Handling Isolation by Annette Leonard

Episode 344: And Things Change by Annette Leonard

Ascended masters often use death meditations as a tool to gain enlightenment.

Given that, I wonder what living with chronic pain and illness can teach us?

I don't mean that we've overcome our fear of death.

But we are the living embodiment of so many people's fears.

That's a big part of the reason why friendships end as illnesses become chronic.

What do we have to show for the journey of chronic pain/illness?

Chronic illness has led me to a contemplative practice and visualization. At times I wonder whether I'm using it to escape.

I downloaded an audio training on astral projection as a way to actually leave my experience.

What skills or abilities have you gained because of chronic pain/illness?

Slowly, with me, take time now to perform a body scan.

What did you notice?

This simple practice has transformed my life.

Both of my parents are exceptionally bright and so identified with their minds. They didn't speak of their bodily experiences or identify with their bodies. This orientation gave me a way to go when trying to learn how to fully inhabit mine.

My mother, who was sick from the age of 18, was raised on the ethic "if you don't have something nice to say -- say nothing."

From my earliest days, I learned her techniques of masterful misdirection rather than how to deeply connect to myself.

The body scan, was something I started to practice at a time when I was the very sickest. I couldn't pay attention to my breath without feeling like I was suffocating (and therefore, I pay attention to my heartbeat).

When we turn toward the thing that is causing us such pain and difficulty, we can notice the subtle changes, the differences between today and yesterday. If I'm not paying close attention: I will miss them.

I can't make changes if I'm not paying attention.

Body scans have benefited me in small ways like: how do I want my eggs? to the modest: am I eating this because I'm hungry or because I'm sad? to the monumental: I've learned how to love myself.

So when you hear me suggest to set an alarm before you go to an event so that you'll do a body scan, this is part of why I think they're crucial.

You can begin them NOW. The easiest way to start is to tie them to a habit.

Do you do body scans? When? Why? How have they worked for you?