Chronic Wellness

I've been out for three weeks because of pneumonia. It took antibiotics and a course of prednisone to resolve things.

Whether it's the plans that get disrupted, or these broadcasts, there are big set backs. I found myself in the kitchen winded from trying to grate cheese. When I'm once again in a cycle of thrush from the antibiotics and unable to get out of this illness-begets-illness cycle it starts to feel like an ouroboros. The snake that eats its tail.

It's a self-perpetuating, self-consuming system. It isn't just my body that's impacted, it is also my mind and my spirit. When I am living with fever dreams, when I am confined, when I have to cancel a few things I've been looking forward to and feel even more "useless" than usual. My mind turns to dark places. Any illusions of "progress" are washed away.

Its likely that this all comes back to control and the frustrating realization about how little we actually have.

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 feeling crummy, on top of crummy. I think I have pneumonia.

Also, I'm going through a depression. In my life depression has been cyclical. It comes around every 3-5 years. One thing that's difficult is that I deceive myself each time thinking that I've somehow "licked" depression. So when it comes back, it is accompanied by a sense of failure.

Living with pain and illness, my mind is a place of refuge. So to have it be a place of difficulty and anguish makes the days longer and harder. It amplifies my experience of pain. I think that if depression had a tag line it would be "what's it all for," or "nothing matters." But this depression has a different flavor. I'm just trolling myself. All the critics are chiming in and are the loudest voice in the room. And right now none of my tools for quieting those are working.

I share this because: I told you I'd be truthful. But also, because you may relate. I'm working on this with my therapist. I'm also trying to understand ways in which this depression might be trying to serve me. What do I need to learn? Are there truths that I need to uncover?

Do you live with depression? What do you do with the critical voices in your head?

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 planning the year ahead. Soon I'll be giving you details about conversations I'll be hosting on IG Live. If there are things you want me to discuss or guests you'd like to hear from, please let me know.

Today, I'm giving you a product review. Every morning I start my day with this hand cream. Because of my autoimmune diseases I have polyarthritis. When I haven't moved, when I'm cold, or when I'm inflamed, my joints hurt the worst. This cream is good for rheumatoid, poly, or osteo-arthritis, but works best on smaller joints. While the cream doesn't work miracles, it does make a noticeable difference. Voltaren gel, used to require a prescription and is now available over the counter.

Because this NSAID is topical, it is not counter-indicated like so many oral NSAIDs. After using it, I do have more mobility am noticeably more comfortable.

What are your favorite products? What do you do or use first thing in the morning to make your day better/easier/more comfortable? Let me know in the comments below!

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.

The holidays are upon us. Here in the US, that means lots of rampant commercialism. I often get sucked into that -- trying to backfill the holes in my heart with shopping (which never works.) But that isn't the subject of this video.

Even for the healthiest among us, holidays aren't what they're cracked up to be. For most, the holidays include baggage; more so for those of us with chronic pain and illness. This is up for me again. Last week week was my most cherished holiday event. I look forward to it all year long.

I didn't record last week and I *didn't* get to get to go to the holiday party because I got a kidney stone. (An experience I DON'T recommend!) I'm in a funk from missing it, but that's part of living with chronic conditions. Scraping ourselves up *again* after these disappointments. So, I'm making this video for you (and for me) in the wake of this loss about how to make holidays that matter.

Watch a favorite (holiday?) movie. Invite a friend to watch it with you: in person or virtually.

Maybe there's a recipe you can make to enjoy.

Perhaps a friend to could do some of the work if the recipe is too much for you.

Decorate a gingerbread house (or several miniature ones)

Create a holiday display over the course of several days.

Set your sights on a big event a look forward to it.

DON'T forget yourself. You are not these illnesses. You are someone who deserves holiday cheer, in whatever way is meaningful and special to YOU. What lights you up? Aim there. When you can't participate in your cousins' holiday gathering doesn't happen, what else can put in place to look forward to? It is very important to have things to look forward to. Let's seek out our next meaningful bit of holiday comfort and joy.

Have you had kidney stones? What will you be doing for holiday cheer?

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.

It's getting dark here very early. I'm noticing that it effects me. More than just the darkness, I'm feeling heaviness. If you've been here you know that I took time off that was unplanned. I'm struggling.

This is the unwelcome but unfamiliar experience: depression. Me and depression go way back. If I'm honest, I always hope I've seen the last of depression. Because of that, I feel a sense of failure. I can acknowledge that it isn't "failure." However, my mind still plays this trick on me.

Old habits of withdrawing rather than reaching out are here. I'm working t see where I'm numbing rather than attending. My therapist offered me the perspective that depression is the needing of attention to parts that are hurt.

I know that I'm not alone. I know that many of us have or are struggling with this monster. What about you? Do you live with depression? What helps/what doesn't?

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.

While Thanksgiving and it's roots are admittedly problematic, this holiday is one of my favorites. The focus on food, friends, family, and giving thanks, are the reasons it is my favorite. I have so much to be thankful for even in the midst of pain and illness.

Chief among my gratitude: this year I got pneumonia and COVID. Having such serious lung disease (in addition to other complex medical problems), none of my doctors would have predicted that I would still be here after such serious attacks to my system. I'm so thankful to still be here, I'm so appreciative that you're still here watching/listening.

In this season of darkness and holidays, there's so much that could be said. What I will remind you and myself to try is to BE HERE NOW. Let's not be in the past or the future, let's be here in this present moment. We can't address tomorrow's questions today. Still make thoughtful preparations but do your best to remain present.

I hope that the gifts of life are revealing themselves amidst the hard and painful. Wishing you joy, comfort, rest, and a chance to count your blessings this holiday.

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 recently traveled to Seattle to visit my specialists. I saw my lung docs as well as a rheumatology specialist. Antisynthetase syndrome is rare enough that my local rheumatologist treats only me with the disease. There I learned a lot about Ig.

For many of us IVIg and SCIg is a live-giving therapy. It has changed the course of my illnesses even though I have an adverse reaction to it.

Those of us with autoimmune diseases are fighting our own bodies, in order to control that, doctors put us on drugs that suppress our immune systems. Naturally, that impacts our ability to fight disease and other external threats. In recent years, my chief complaint has been that being around people makes me sick. Even when those people aren't sick.

In Ep 350 I talk about getting my Ig tested to see if I was mounting autoantibodies for the COVID vaccine. The rheumatologist in Seattle looked back at those labs from May and said my Ig numbers were too low. One's Ig numbers should not fall below 600. Mine were barely above 500. There are two ways to remedy this: give Ig (SCIg or IVIg) or reduce immunosuppression. For me, that means reducing my Rituxan.

Here, 10 years into living with autoimmune disease I'd never heard of measuring my Ig levels, or learned about the 600 threshold, and that being on a heavy-hitting drug like mine, these levels should be monitored quarterly. That seemed like information worth sharing.

Are you on chemotherapy or other strong immunosuppressive drugs? Do you get your Ig tested regularly? Did you know about the 600 threshold? Sound off!

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 continuing to talk about my experience with COVID. I have something like 6 autoimmune disease from Sjogren's to Polymyositis. The most threatening with COVID is having Pulmonary Fibrosis (related to antisynthetase syndrome). This lung disease means that my lungs are progressively turning themselves into scar tissue. Contracting COVID was scary. Therefore, it is miraculous that I came through it.

On about the 2nd day, having been in contact with my doctors, I got on antivirals. However, because of some of the pain meds I take, and because of my blood thinners, I could not take Paxlovid. I got put on Molnupiravir. Less effective than Paxlovid, Monupiravir is still saving lives.

When I am at my most sick, I prioritize my medications. Monupiavir was 4 capsules 2x/day. I take 33 pills per day and when feeling nauseated, or feeling my crappiest, I prioritize my highest value meds and take out some of the things I can live without for a couple of days and swallow a fewer pills for a couple of days. At this point my dry cough had given away to wet cough and found that Sudafed was helpful.

My oxygen saturation was dropping and the danger zone is when you get below 88%. Thankfully, I have an oxygen concentrator and liquid oxygen available at home. After the first few days the vomiting stopped but the nausea and intestinal symptoms continued. The pain in my body felt a lot like a fibromyalgia flare. What's dangerous about having a serious illness (an accident, times of great stress) is that our autoimmune conditions are likely to start relapsing. So COVID becomes dangerous on these other fronts. Also, ALL of my chronic illnesses began with an EBV infection so I know that I'm prone to post-viral infections. I always assumed that I'd be a candidate for long COVID.

I'll talk more about my experiences in coming days and weeks about my COVID experiences. How about you -- have you had COVID? Avoided it? Had it more than once? How has it interacted with/impacted your other illnesses? Please comment!

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.

If you can avoid getting COVID, do. Here's a bit about what happened when I got COVID.

Because of my lung disease I can't breathe through a N95 or KN5 mask. But, while wearing a cloth and surgical mask, I caught COVID from my sister-in-law.

I'd just had treatment (Rituxan/chemo) about 10 days prior so my immune system was fully suppressed to keep me from fighting myself.

We'd been having fires in the area so I thought perhaps my scratchy throat was due to the poor air quality. Then I got more tired. A negative COVID test made me feel hopeful that I wasn't sick but I coughed all night long. When I tested positive the following day, I knew I'd exposed her.

For the first 24 hours, COVID felt like the worst flu I've ever had -- high fever, chills, extreme body aches, nausea/vomiting, terrible headache. The headache (in combination with my migraines) was extraordinary. Sleeping in 60-90 minute chunks because of coughing, congestion, mouth-breathing, and crippling fatigue. After sweating through the sheets on one side of the bed, I grew bone weary moving to the other side of our queen-sized bed.

I'll continue to discuss how COVID played out in the coming days and weeks. Let me know if you have questions or tell me how you've been impacted by COVID with co-existing conditions.

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.