FOR UPDATES and studies/research on vaccines and autoimmune disease, please scroll all the way down to “NEW FINDS” (under “RESOURCES”).
Vaccine hesitancy and autoimmune disease. Yep, been dealing with it. The struggle is real, people!
I say that jokingly, but, I have lost many nights of sleep over whether or not to get the Covid vaccine.
To be clear: I am using the term “hesitancy” in the truest sense of the word: I am hesitant. I am not “anti-vax”, I am not “pro-vax”.
I consider myself skeptical as well as open-minded.
With that in mind, I’d like to share my thoughts and perspective here, as well as some resources. I do this for three reasons:
One, so that my friends and family will better understand where I’m coming from.
Some of my friends have gotten quite judgy or angry with me for not immediately lining up for a shot when it was made available to my age group [which shall remain undisclosed].
This makes me a little sad as well as frustrated. I personally don’t feel the need to have to explain myself or my choices, but, since the world’s health is at stake, I get their concern. I just wish that these people would actually listen instead of assuming they know where I am coming from. There is so much nuance here, as with most polarizing topics. I invite you all to hone your listening skills, as they are needed everywhere, not just in the health and wellness industry.
Two, it helps my thought process to write it all out and get really clear on my thoughts and beliefs on a topic. Changing one’s beliefs is a hard task. As a coach, I see these challenges every day in my client sessions. Journaling and writing for me are super helpful (and why they are an important part of my online courses).
Think about your own beliefs about religion, politics, diet, health, or vaccines. Beliefs can run deep and can be hard to uproot or change.
Three, I’m sharing in the hopes that this helps someone else make a better-informed decision about the vaccine for themselves – or at the very least, not feel so alone in their confusion.
There is not a lot of information out there about the short-term and long-term effects of this vaccine on people with autoimmune diseases. Of course, as time marches on, the more we know.
I have included a lot of resources that were helpful to me, including several resources from the autoimmune community specifically.
Here goes. I hope this is helpful to you.
NOTE: There are a lot of links in this post, I will put them in as I type and will offer additional resources at the end. I hope to also update this post as more research becomes available regarding the effects of this vaccine on those with autoimmune issues.
If you have received the vaccine, please share your experience in the comments if you feel comfortable doing so, and share this post with others who may benefit.
This information is being provided in this blog post is for educational and informational purposes only. The provision of this information to you does not constitute advice or endorsement by Sandy Swanson, Swanson Coaching, LLC, or its representatives. Please speak with your medical care team before making any medical decision regarding your health and well-being.
First, some science: T-helper (Th) Cells and Viruses when it comes to Vaccine Hesitancy and Autoimmune Disease
People with autoimmune diseases have imbalances in their “T-helper” (Th) cells. Balancing the activity of Th1 and Th2 cells is – well, a balancing act.
Certain things (herbs, foods, environments) can sometimes stimulate Th-1 cells or Th-2 cells which can throw things off even more and cause a “flare” or worsening of symptoms.
What do these T-helper cells do? From Dr. Datis Kharrazian:
“If you are TH-1 dominant, you are producing too many natural killer and cytotoxic T-cells. These are the ones that immediately attack the intruder.
“If you TH-2 dominant, you’re flooding your system with B-cells. These are the antibodies that tag the intruder so it can be more quickly identified next time.”
Most people with Hashi’s (but not all) have Th1 Dominance. I have found that, possibly due to my Th-1 dominance, I don’t readily catch viruses (or maybe I do but I just don’t show symptoms).
I am not immunocompromised (having a weakened immune system), I have an overactive immune system. This means my body is pretty good at fending off colds and viruses.
Who is to say I couldn’t fight off Covid if I acquired it? (rhetorical question here folks, because yes: there’s a lot we don’t know about Covid/long Covid and Covid/long Covid and autoimmune disease.) But still, there’s a lot to be said for being relatively healthy and having a strong immune system. See “The Cliff Metaphor” below.
Vaccines may have the potential to upset this balance of Th1 and Th2 helper cells.
From an August 2020 study:
“Potential antigenic cross-reactivity between SARS-CoV-2 and human tissue with a possible link to an increase in autoimmune diseases: “There are reasons for all the precautions involved in developing a vaccine, not the least of which are unwanted side-effects. In light of the information discussed above about the cross-reactivity of the SARS-CoV-2 proteins with human tissues and the possibility of either inducing autoimmunity, exacerbating already unhealthy conditions, or otherwise resulting in unforeseen consequences, it would only be prudent to do more extensive research regarding the autoimmune-inducing capacity of the SARS-CoV-2 antigens. The promotion and implementation of such an aggressive “immune passport” program worldwide in the absence of thorough and meticulous safety studies may exact a monumental cost on humanity in the form of another epidemic, this time a rising tide of increased autoimmune diseases and the years of suffering that come with them.”
Another study from October 2020 stated that:
“The two main categories of diseases reported in the biomedical literature triggered by vaccinations are Autoimmune (e.g., Systemic Lupus Erythematosus, Psoriasis, Arthritis, Multiple Sclerosis, Hepatitis, Uveitis, Pseudolymphoma, Guillain-Barre Syndrome, Thrombocytopenic Purpura, etc.) and Neurological (e.g., Central Demyelinating Diseases, Developmental Disability, Febrile seizures, Narcolepsy, Encephalomyelitis, Autonomic Dysfunction, etc.). Others include Diabetes, Gastrointestinal, Joint-related, Necrobiotic Granuloma, Neutropenia, Pulmonary Fibrosis, etc.”
The human body is an amazing thing and does a really good job at maintaining homeostasis – that balance of being healthy and naturally correcting imbalances.
What if something threw off that natural balance – and that balance was never regained?
You’ve probably heard of “cytokine storms” from all the Covid coverage out there. A cytokine storm is an immune response that goes off the rails and doesn’t stop.
From this article: “When everything is working as it should, pro-inflammatory cytokines and anti-inflammatory cytokines work together to kill off an invader and then settle down so the immune system isn’t perpetually in attack mode. When things go awry, however, your immune system stays on the attack and you can end up with a cytokine storm.”
“When it comes to COVID-19, the coronavirus — likely coupled with a previously unknown defect in the immune system — is what leads the inflammatory cytokines to go haywire and essentially multiply. They “recruit and activate additional immune cells and amplify the immune response” so much so that the immune response starts killing off healthy cells in the body”, says Dr. Cron. “If left untreated, this can result in multi-organ failure and eventual death.”
For the average joe, cytokine storms may not be a big deal. However, if one already has imbalances in their immune systems… you see where this is going.
Th1/th2 imbalances provoked from vaccines may accelerate this cytokine activity, potentially leading to a cytokine storm.
Scary stuff either way.
I feel like I’m playing Russian Roulette, with a gun loaded with two bullets.
If I pull the trigger, I might get nothing. Or I could get long-term Covid symptoms that do not go away. Or a reaction from a vaccine that does not go away.
Right now, Covid is the lesser of two evils for me.
This is my belief.
More here on Th1 and Th2.
The Cliff Metaphor.
I’m going to start with a metaphor (because those of you who have worked with me know I love my metaphors!) that I first heard on this podcast.
Imagine, if you will, a cliff.
Now imagine the world’s population at various distances from the edge of the cliff.
The people closest to the cliff are not in good health. These are the folks with issues like high blood pressure, high cholesterol, high blood sugar. People who don’t exercise. Those who don’t eat well. Maybe they are obese.
In short, metabolically, their health is not good. Most (not all) of these people are near the edge of the cliff because they are not able (due to lack of resources, information, finances, motivation, etc) to address health issues with dietary and lifestyle changes.
Now, imagine that a stiff blast of wind called COVID-19 comes along.
It blows a lot of those people closer to the edge of the cliff – or over the edge.
The people in the back, however, those far far away from the edge of the cliff – they aren’t as affected because they are in much better health. Maybe some fall down, maybe some get pushed closer to the edge, but for the most part, they’re ok.
Here’s a quote from Dr. Mark Hyman as heard in The Longevity Roadmap that resonated deeply with me:
“What we’re finding is 94 to 97% of the people who die from COVID-19 and the reasons our hospitals are full of patients with COVID-19 is not because of the virus…It’s because of the host.
When you’re inflamed because you’re overweight or obese, or you have one of these chronic diseases, which is caused by metabolic dysfunction, you are pre-inflamed.
Your body is ready to activate an even greater inflammatory response, which is what kills people from the virus.
The virus doesn’t kill people.
Our body’s immune response to the virus destroys our tissues.
So people are pre-inflamed, if they’re overweight or obese, which sadly is most of our population. 75% of us are overweight, 42% of us are obese, and only 12% of us are metabolically healthy.
That means 20 to 40% of people who are normal weight also are metabolically unhealthy because they eat a crappy diet.
And even if you’re not fat overweight, you can be over fat inside. You can be thin on the outside and fat on the inside, and you’re also susceptible to the same diseases and inflammation as everybody else.
When you’re overweight or obese, your immune system is suppressed. You tend to shed virus a lot longer so you spread it more.
Your immune system can’t respond to a vaccine like healthy people.
Therefore the immune system will not actually activate your own antibody responses if you get a vaccine, which is bad news, and you are less able to fight this virus.
So the whole state we’re in now, the lockdown of our society, the economic catastrophe that’s costing so many people their jobs and livelihood and trillions of dollars of economic losses globally is really because we are metabolically unhealthy…
… and the virus has landed on a susceptible host — and we can change that quickly — by changing your diet.”
I consider myself to be in that 12% – nowhere near the cliff’s edge.
Despite experiencing autoimmune issues, I am quite healthy. I consider myself pretty far from the edge of the cliff.
I have worked incredibly hard on my health over the past 10 years since my diagnosis with Hashimoto’s Thyroiditis:
- I protect my mornings at all costs – I have a yoga/breathing/QiGong/meditation routine I do every single morning that is an important part of my healthcare regime.
- I prioritize my sleep and am very careful about everything I put in or on my body. Food, meds, supplements, lotion, makeup (because what goes ON your body goes IN your body), etc.
- I get out in nature as often as possible. I go for 45-60+ minute walks 2x/day when I can.
- I’ve done an elimination/provocation diet to discover my personal food sensitivities.
- I stopped going out as much as I used to due to food sensitivities as well as smell/sound sensitivities.
- I’ve gone through countless doctors, many of whom dismissed my symptoms, misdiagnosed me with depression, and kept my thyroid severely undermedicated.
- I’ve tried 7 different types/combinations of thyroid meds to find one that worked for me (this alone took 9 years).
The past ten years have been a grand experiment in finding what works for me and what doesn’t. I haven’t had control over all of the variables, but for the variables I can control (of which there are many), I know what works and what doesn’t.
In other words, I’ve worked my ass off to get to where I am today.
A year ago I finally connected with a doctor who took my healing to a whole new level. She is not a “conventional medicine doctor”, she is a Functional MD who understands autoimmune disease and chronic illness.
It’s been great, and at my recent visit last week, my thyroid labs are finally looking great as are my iron labs and vitamin D levels. Huzzah!
To blindly introduce something I have no control over (like a vaccine) scares the bejeezus out of me.
Especially when I’m nowhere near the edge of the cliff and have a strong immune system.
This is where a lot of my vaccine hesitancy and autoimmune disease comes from.
I’ve gotten to know my body REALLY well over the years.
I have become the biggest advocate for my own health that I’ve ever had.
I’ve learned about various diets and how foods affect us. What sleep does for us. What exercise works best for me. How to meditate and how to breathe better. How to cope when symptoms flare. Where to find support.
I’ve learned about how the thyroid hormones work, how T4 is converted into useable T3, and how the gut works; I’ve learned about methylation and the MTHFR gene, about epigenetics, about my own inflammation markers, and what food triggers cause inflammation for me.
I understand the effects of gluten on zonulin, a protein in the body that controls the “tight junctions” in the gut. I know that I experience symptoms when ingesting too many high-histamine foods or high-oxalate foods so have to be ever mindful. My body no longer reacts to certain foods (woo-hoo to healing the gut and doing the hard work!) but now other foods are now causing issues (sadface) as I age and my body shifts and changes.
I’ve learned how to read my own labs: thyroid, iron, cortisol, and others – all in the name of becoming better educated and more informed so I can make better decisions about my health and can ask my doctor questions, which she happily answers.
(If your doctor ever dismisses you for being curious about your own health, please please please find a new doctor.)
I have, with the help of my new doctor, figured out a regimen of meds and supplements to help my body do what it’s supposed to do naturally but has trouble doing due to the autoimmune nature of Hashimoto’s (currently consisting of: compounded thyroid replacement hormone, compounded LDN [low-dose naltrexone], DIM-CDG, Ubiquinol, B-complex, ALA/NAC, biotin, acetyl l-carnitine, Glutenflam, Enterovite, berberine, zinc, magnesium, B6, melatonin, and Vitamin D. NOTE: Please do not run out and buy these supplements. Save your money, speak with YOUR doctor and TEST, DON’T GUESS before supplementing).
I consider myself extremely well-versed when it comes to my own health and wellness. I know what works, what doesn’t. Many folks within the “autoimmune community” are the same way.
Why is this?
Because the conventional medicine model has failed so many of us.
There’s a lack of good doctors who understand autoimmune disease who take traditional insurance (and let’s face it, most of us do what our insurance tells us to do, not what our hearts or guts tell us to do). They are not trained to treat the whole body – they’re usually trained to look at one part (e.g. endocrinologists look at the endocrine system, cardiologists look at the heart, etc).
There’s a time and place for specialized medicine, and it is important.
However, autoimmune diseases can affect the whole body. As a result, those of us with these issues tend to become incredibly well-informed and well-read on many subjects related to our own health.
Wouldn’t it be great if the entire population were this way? If everyone made their health and well-being an absolute priority?
We’d have a lot fewer people near the edge of the cliff, that’s for sure – so when another stiff breeze of whatever virus/pandemic comes along (and that WILL happen), we’ll all be healthier and better prepared as a population.
I know most of the population is not this educated when it comes to their own health and bodies. They depend on others to tell them what to do and they trust and accept whatever is said. They may not have the time, money, or resources to do their own research. Or, they simply are following what has been done for years: Look to an authority figure to help, because they know best. Trust your doctor. Look externally, not internally, for the answers to all health issues.
However: when a doctor dismisses you for not feeling well and tells you “it’s all in your head” or “you just need a nap and you’ll feel better” or “you’re depressed, here, take these meds” – when you KNOW in your gut that something is not right, that trust in the external world begins to erode a bit.
This happens more often than not for those of us with complex health issues. The Hashimoto’s 411 group on Facebook, where I am a Senior Admin, has close to 100,000 members with autoimmune thyroid disease for a reason: Our current healthcare system has failed to give us the answers we so desperately need and has, more often than not, dismissed our symptoms.
Health should be a priority for each and every one of us – that is my belief. I believe we should be doing our own work instead of blindly taking meds without understanding what the options are for better health. We should be looking at every single thing we put in our bodies. I believe we should be trusting our intuition and getting curious about what is preventing our doctors from listening, taking us seriously, and truly helping us – instead of brushing aside our symptoms and rushing on to the next patient.
More on beliefs in a minute.
Skepticism of the American Healthcare System and FDA/CDC and how this plays into Vaccine Hesitancy and Autoimmune Disease.
I just listened to a great podcast about why people in the health and fitness industry are particularly hesitant in getting the vaccine. You can listen to it here.
The podcast makes an excellent point in that while most of us in this industry are usually quite open-minded and interested in new science and new studies, we are also quite skeptical. We like to do our own research. To “trust but verify”.
Sidebar: Just listened to another great podcast (#123 with William Irvine) about the tension between being open-minded and being skeptical – and having a good balance of these two which results in having a mind full of true and useful beliefs. If we are too open-minded, we let everything in. For example, conspiracy theories and other ideas may flow in without any filter. The opposite would be a person who is too skeptical. That person ends up with true and useful beliefs, but all sorts of other true and useful beliefs would be left on the sidelines because he would be unable to open himself up to them.
There have been times when the FDA has just gotten things wrong. Think of the saturated fat debacle that still plagues our way of eating (one last time: saturated fat, in moderation, is good for you!).
How about when we were told that butter should be avoided and replaced with margarine? The Cheesehead in me still cringes at that one.
Or that coffee is bad for you.
Think about the food pyramid, that most of our diet should be grains.
Oof-da.
And then there’s this latest comedy of errors of the “Nutrient Profiling System” from Tufts University that states Cheerios, nonfat chocolate frozen yogurt and Lucky Charms are more nutritious than an egg fried in butter, ground beef, or cheddar cheese.
What the actual f***.
Bottom line: our government, when it comes to the overall health of this country’s population, has failed in so many ways.
So for me personally, there was a LOT of skepticism surrounding this vaccine for this very reason. Why should I now suddenly trust my government when it comes to my health when they have already failed me in so many ways…?
I do, however, try to keep a very open mind, and I respect and trust science. That said,
it takes an average of 17 years for research and studies to reach clinical practice.
Yeah, you read that right. SEVENTEEN YEARS for studies to make it to your doctor’s office. And yes, there was a study on this.
For example, Alessio Fasano’s ground-breaking research on gluten and autoimmune disease from 2013 has yet to make it to most doctor’s offices. And yet, many doctors today will still tell you that diet has no effect on how autoimmune disease affects the body. (!!!)
If my math is correct, it will be around 2030 before this research on gluten will be common knowledge among primary care physicians, general practitioners, and endocrinologists.
Who has time to wait for that to happen when one’s health is at stake?!
Now is the time to be proactive when it comes to your health. Be curious. Question everything. Find a doctor who is up to the challenge, not one who dismisses you.
I am lucky in that I am surrounded by lots of smart people who also happen to have autoimmune diseases and are incredibly proactive when it comes to their health. We help each other by seeking out research and studies and we see how it stacks up against older research.
And yes, we are very, very skeptical.
Most Functional MDs tend to be on top of new research in this manner. They are not constrained by the rules of insurance and make it a priority to be informed so they can better serve their patients.
These days most doctors are answering to the whims of insurance companies, not their patients. Which is too bad.
To be clear: This is not a dig against “conventional” doctors.
This is a dig against the broken healthcare system we have. Doctors are generally overworked, drowning in paperwork (thanks again, traditional insurance), and simply do not have time to keep on top of all the research and studies that come out every single day.
Speaking of studies: The studies and research regarding Covid and vaccines are fast and furious and this is great to see. And it’s taking a lot less than 17 years to reach the public thanks to the nature of this pandemic, which is the way it should be (another belief of mine). If only all research were fast-tracked in this way!
And yet, there is still much unknown about the effect of Covid vaccines on those with autoimmune issues. mRNA vaccines are a new thing. Yes, mRNA technology has been around before and used in various applications – but it has never been used in a vaccine prior to Covid.
The Benefits of Waiting: More research, more studies to help with vaccine hesitancy and autoimmune disease.
There is one study happening right now that will look at how booster shots affect those who take immunosuppressive medications, which is a great step in the right direction in better understanding how vaccines affect those people with wonky immune systems (results expected November 2021).
There’s also the theory that natural immunity (from having Covid) may be a stronger type of immunity against Covid [NOTE: this article has NOT yet been peer-reviewed]. Of course, acquiring Covid has its own risks, which is why “Covid parties” (like chicken-pox parties) probably aren’t a good idea.
There was also a study considering the effects of the vaccine on adrenal disease, diabetes, osteoporosis, thyroid disease, and a few other conditions (August 2021).
Others are suggesting studies looking at the effect of the vaccine on those with thyroid issues (September 2021). I myself have thyroid disease so this is especially exciting to see.
And, I just listened to a virology report that suggested that the 2nd shot of Pfizer and Moderna (mRNA vaccine) could be taken much, much later than originally thought (6-14 weeks instead of the usual 4 for the 2nd shot). Would this be beneficial to those with compromised immune systems..? I would love to know the answer to this one.
More, please!
My Beliefs: My health, vaccine hesitancy, autoimmune disease.
We all have deeply ingrained beliefs. Think about your own beliefs for a moment: your beliefs about religion, politics, vaccines, your health. What comes forward for you?
I have created some pretty deep beliefs around my health. Some examples of these beliefs include:
- I believe I know which foods are “good” and which are “bad” for me
- I believe that we all have the power within us to heal ourselves
- I believe that healing emotional trauma from the past can help heal our physical health
- I believe that energy work and mindfulness have tremendous healing capabilities
- I believe that everyone should prioritize their health above all else
Some other beliefs I have:
I believe that changing one’s diet and lifestyle can save lives
and
I believe that vaccines can save lives.
And:
I believe that not making diet and lifestyle a priority has the potential to cause irreparable harm to one’s health
and
I believe that vaccines also have the potential to cause irreparable harm to one’s health.
What if one’s beliefs are in conflict with each other…?
Aye, there’s the rub!
The Confirmation Bias is Real when it comes to vaccine hesitancy and autoimmune disease.
As hard as I try, it is difficult to not zoom right in on the reports of those who have received the Covid vaccines and had terrible, disastrous reactions.
We look for things that will confirm our fears (hopes, dreams, what have you). It’s so easy to “cherry-pick” the data to skew in favor of our beliefs.
And that data may already be biased depending on who has written it/is speaking about it.
As far as Covid vaccines go, there have been many cases of people who acquired subacute thyroiditis after the jab, as well as the two women that were diagnosed with Graves after getting the shot. Other examples of the vaccine possibly causing autoimmune issues include those who have acquired thyroid eye disease, the development of Guillain-Barré Syndrome, (I have a friend who has been hospitalized post-vaccine due to symptoms of possible Guillain-Barré; it’s frightening what she is going through) and autoimmune hepatitis.
EDIT 12/11/21: Here are two more posts concerning Guillain-Barré Syndrome (more recent finds all the way down the page under “RESOURCES”):
Research letter “Rate of Recurrent Guillain-Barré Syndrome After mRNA COVID-19 Vaccine” (09/1/21)
CDC study stated that more cases of Guillain-Barré syndrome were being reported after the Johnson & Johnson vaccine compared to mRNA vaccines. (12/11/21)
Here’s a fun fact: When someone has an autoimmune disease, it is quite common to acquire more very easily. We call this “collecting” autoimmune disorders.
There are also reports that those with underlying co-infections like Lyme, EBV, herpes, or have mold sensitivities tend to react the strongest to the vaccines. These infections may not be apparent or diagnosed – they can be pretty stealthy. And they are quite common “root causes” of autoimmune issues.
I have not been tested for any of the above as that can get pretty spendy, and I’m trying to be methodical about where I put my money when it comes to my health. But if there was something hanging out inside of me, would a vaccine trigger something…?
Mast Cell Activation Syndrome or MCAS (mast cells are a type of immune cell) is something that some people with autoimmune disease experience. Will the vaccine trigger something for these people? Make things worse? I don’t have MCAS but have a friend who does. She’s decided that if/when she gets the Covid vaccine, she will get it at the hospital, and stay a few hours in case of a severe reaction.
These reports of vaccine-related autoimmune issues are of great concern to me, someone who already is experiencing an autoimmune disease.
More info here for those interested in MCAS and Covid and the vaccines.
The Swiss Cheese Model of Safety.
When it comes to vaccine hesitancy and autoimmune disease, I’ve found that the “swiss cheese” model helps explain where I’ve been in terms of this pandemic, and where I’m going. The model goes something like this:
Swiss cheese slices are mostly cheese, but, there are some holes in almost every slice.
The more slices of cheese we have, the more layers we have to protect ourselves. This means the less chance that Covid is gonna find its way through the holes. Some of these layers might be:
- social isolation
- physical distancing
- washing hands
- disinfecting surfaces
- wearing masks
- having a strong immune system from living a healthy lifestyle
- natural immunity from a previous infection
- immunity from a vaccine
The more layers there are, the less risk there is of Covid getting through the holes and infecting a person.
And yes, with vaccines there are still holes, so “layering your cheese” is still highly recommended.
So far, I’ve been doing great with the first four layers (social isolation, physical distancing, washing hands, wearing a mask, disinfecting surfaces). My Swiss Cheese is pretty cheesy despite there still being holes. This is a good thing not only because I am from Wisconsin, but also because there are smaller/fewer holes for the virus to get through to me.
I’m lucky in that I live in a place where over 82% of the population is now vaccinated (as of my writing this, October 22, 2021). I feel very safe going out grocery shopping (while still masking up and keeping my distance) or meeting friends outside for lunch or coffee.
This has served me quite well for the past 19 months. I have had no desire to travel (or to be with people – but that’s been my modus operandi for years – no offense, people), and no employer telling me what to do. One of the many joys of being mostly self-employed! 🙂
Now, as things are opening up and people are going back to work in person, I am facing a vaccine mandate from an employer.
I would soon be around people most of the time.
And this job is in Florida. So. There’s that hot mess.
I would also be surrounded by colleagues for two months, for hours every day, in close quarters. Quite a different scene from the one-woman party I got going on here.
Knowing what we know now about this virus being transmissible even if you are vaccinated makes me quite uneasy thinking about this new environment, well outside my tidy little bubble.
Even though I still have confidence in my own immune system and its ability to fight off viruses, I don’t want to be responsible for passing along the virus to someone who is not as healthy as I am.
The first two layers of my Swiss Cheese would be pretty much toast. Mmm, Swiss Cheese on toast… geez, gluten AND dairy, look what this pandemic is doing to me! Gah!
Did I mention the struggle is real??
Personal experiences are SO helpful to those of us who are vaccine-hesitant and have autoimmune disease.
Thankfully, as more and more people get vaccinated, in addition to more research and data to consider, there are more and more personal experiences from real people.
It helps me to see how people like me are reacting. Most of my friends with Hashi’s and other AI disorders have gotten the vaccine and have not had horrid, long-term reactions.
Reading other people’s experiences has helped alleviate some of my fears and concerns. I am grateful to those who have voiced their opinions and experiences, thank you!
I will include some of these resources below under “VACCINE THOUGHTS and EXPERIENCES FROM THE AUTOIMMUNE COMMUNITY”.
My decision.
I’m grateful I was not forced into this earlier, as I would not have been ready. I’ve done a lot of work this past year since the vaccines have been released; I’ve been reading, researching, and waiting.
My conscious layering of Swiss Cheese has served me well. Staying on top of my diet, sleep, and exercise has kept me far from the cliff’s edge.
Bottom line: I still don’t want the vaccine, but, considering my upcoming work situation, the tables have turned: It is now the lesser of two evils.
Right now I feel pretty good in terms of my health. I have minimal symptoms. There’s still some muscle weakness as well as some puffiness when eating too many oxalate-rich foods. My pesky histamine issues are all but gone if I mind what I eat.
My gut is feeling pretty good too; I won’t get into the nature of my fabulous bowel movements, but, when you consider that at one point I was only having one per week and now I have one every morning like clockwork – well, let’s just say my gut is functioning really well, which in turns helps everything else in my body (elimination of toxins, absorption of nutrients, meds, and supplements, creation of neurotransmitters, assimilation of macro and micronutrients, etc).
I’m really hoping none of these things change.
So. I’ll be getting the vaccine.
I’ll update this post after I receive my first and second shots (going for the Pfizer).
The protocols I will follow before and after receiving my vaccine:
The best information I have found is through the IFM (Institute for Functional Medicine) website.
First of all, vaccine aside, they have great info on how to stay healthy during a pandemic (and otherwise).
Here is their Pre-Vaccination Protocol.
Afterward, I plan on taking it easy, eating well as always, drinking lots of water, and taking Epsom salt or baking soda foot soaks (which just feels really nice anyway).
UPDATE: Pfizer shot #1 Monday, October 25th, 2021.
Felt pretty good going into the pharmacy. I made an appointment and did not have to wait long.
After being seated in “the chair” I spoke to the pharmacist about my concerns with Hashimoto’s and autoimmune issues. He stared blankly at me, which did not inspire confidence in my choice.
(I realize that pharmacists, like everyone in the medical world these days, are doing their best. But still: sigh.)
While I felt pretty good with my decision, I was not ready for the emotions that came flooding out when the needle went into my arm and the plunger was pressed.
Even though I have worked hard on shifting my beliefs, there was something inside of me that was still terrified – like I had let my body down. Denied what I believed to be true about my health.
Damn, beliefs run deep.
Physically, I had no immediate allergic reactions, but I wasn’t expecting any. My deltoid muscle got more and more sore as the day went on (this was expected). I didn’t sleep well that night (rare for me these days).
The next morning I woke up with a slight headache (also rare for me) and was a little tired.
Two days after the slight headache persisted, as did the sore arm muscle.
Three days after I felt “normal” (relatively speaking, no comments from the peanut gallery please).
I’ll continue to update as time goes by as I am still concerned about delayed reactions or long-term issues.
Hoping there’s nothing but a lot of crickets in this space.
And: I’ll also be waiting 12 weeks, not 3, for my second shot.
UPDATE: Pfizer shot #2 Thursday, December 30, 2021.
I decided to get my 2nd shot at 9 weeks (rather than 12 weeks as I had planned) “just in case” something happened. I did not want to be in my car driving to Florida in the middle of bumblef*** nowhere in case the shit hit the fan.
One pharmacist took my vaccine card and added this second shot to my record. A second pharmacist came out and, as he was prepping my arm and the needle, asked “no reactions after the first two shots?” um…. yeah… no. Nope. No reactions after the first “two” shots.
Didn’t feel like explaining that this was my 2nd shot, not my booster. No energy for that.
I was not as emotional as I was for the first shot. Reacting “normally” definitely helped here.
My deltoid muscle got pretty sore again. The following day I felt like I had been hit by a truck – low energy, fatigue, general malaise. Felt fine by the day after.
The third day after I awoke with a headache, again, rare for me. But now I am thinking that these might be related to change in barometric pressure as there seems to be a pattern… interesting, as I haven’t experienced headaches in about 20 years.
Will keep you posted if anything goes awry.
PS: Do I plan to get a booster? As of now, no. But we’ll see how the mandates and future variations of COVID play out.
How you can support someone who is hesitant about getting the Covid vaccine:
First, don’t assume they are in the wrong. Beliefs are not right or wrong, they just are – and beliefs can run deep and strong. To judge and dismiss another’s beliefs (about anything) does no one any good.
Second, learn how to listen better without inserting your own agenda. As a coach, this is something I work hard on every single day, both in and out of my client sessions. This Ted Talk is a great introduction on how to listen better.
(Special shout out to my mom, as well as my “partner in crime” Diek, and the Mods and Admins of Hashimoto’s 411 – especially Pearl, Jan, and Shannon. You all have mad listening skills, which I deeply appreciate.)
TWiV (This Week In Virology) speaks to this very question about supporting those who are vaccine-hesitant.
Third, if you know someone has their facts completely wrong, gently challenge them. The keyword here is gentle. Sometimes people get facts and beliefs all tied up in knots. If they are not ready for these to be teased apart, it may be best to let it go and move on.
In the meantime, if you are experiencing vaccine hesitancy and autoimmune disease, please check out the resources below. I also welcome and appreciate your thoughtful comments and invite you to share your experiences:
Did you get the shot? What was your thought process for this decision?
If you did get it, what emotions came up for you? Which shot did you choose? Any physical reactions past the usual?
And: In what ways did your beliefs come into play – if at all?
As always, thanks for reading, and thanks for your support.
Sandy
PS. I would love to be a support if you are dealing with vaccine hesitancy and autoimmune disease. To book your Complimentary Session and Assessment, click here.
Sandy Swanson is a Certified Functional Health Coach (A-CFHC) and a National Board Certified Health and Wellness Coach (NBC-HWC). You can learn more about her here and more about what coaching is here.
This information is being provided in this blog post is for educational and informational purposes only. The provision of this information to you does not constitute advice or endorsement by Sandy Swanson, Swanson Coaching, LLC, or its representatives. Please speak with your medical care team before making any medical decision regarding your health and well-being.
RESOURCES for Vaccine Hesitancy and Autoimmune Disease
Here are a few things to help you in your own research. I’ll try to keep this updated. If any of you come across studies or research related to autoimmune disease and the Covid vaccine that isn’t covered below, let me know and I’ll add in some links.
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STUDIES, RESEARCH, ARTICLES on COVID AND VACCINES:
This Week In Virology aka TWiV (great video and podcast, new episodes every few days, Episode #825 from 11/1/21 addresses a lot of questions and latest research)
Covid Updates and Latest Information from IFM (Institute for Functional Medicine, updated frequently)
Here’s a great video from IFM on how the different Covid vaccines work.
Info on vaccine efficacy, ingredients/tech details, and possible adverse reactions – also from IFM.
JAMA Network – search results in the Journal of the American Medical Association (search terms: vaccine, autoimmune – newest).
Vaccine injury and legal recourse (10/2021)
RNA-based vaccines and risk of immune-mediated disease 3/2021
Yale Medicine: Guilliane Barré Syndrome and the Johnson&Johnson vaccine (7/2021)
VAERS (Vaccine Adverse Event Reporting System). From their “about” page: “VAERS is a passive reporting system, meaning it relies on individuals to send in reports of their experiences to CDC and FDA. VAERS is not designed to determine if a vaccine caused a health problem, but is especially useful for detecting unusual or unexpected patterns of adverse event reporting that might indicate a possible safety problem with a vaccine.”
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VACCINE THOUGHTS and EXPERIENCES FROM THE AUTOIMMUNE COMMUNITY:
Autoimmune Wellness has a great post with people sharing their experiences with the vaccine.
Mickey Trescott (of Autoimmune Wellness) also did an interview with Dr. Terry Wahls about the vaccine (Dr Wahls has MS). (3/2021)
Dr. Wahls also has a blog post about the concerns of the vaccine and autoimmune issues. (1/2021)
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A GREAT OVERVIEW OF VACCINES FROM SOMEONE WITH AUTOIMMUNE DISEASE:
Sarah Ballantyne does a great job of explaining the vaccines on The Whole View podcast. These are lengthy and science-y listens, but well worth it for a deeper understanding of vaccines:
#440 – overview/history of vaccines and mRNA technology (1/2021)
#441 – Pfizer vs Moderna (1/2021)
#443 – Vaccine Myths and Facts (2/2021)
#454 – Johnson&Johnson and AstraZeneca (4/2021)
#455 – Updated Vaccine Studies (5/2021)
#468 – Delta Variant (8/2021)
NEW FINDS (dates are when these links were added to this post; studies may have earlier dates):
Research letter “Rate of Recurrent Guillain-Barré Syndrome After mRNA COVID-19 Vaccine“ (09/1/21)
Eileen Laird of the Phoenix Helix website released a podcast discussing vaccines with Dr. Aly Cohen. Lots of great resources in the show notes! (11/12/21)
Long but an excellent listen: Marcus Aubrey Podcast discussing the vaccine and vaccine injuries with Microbiologist Dr. Aditi Bhargava (the director of laboratory research at UCSF who helped develop mRNA technology), professional mountain biker Kyle Warner, and school teacher Brianne Dressen. (11/24/21)
Another study on the effects of waiting for the 2nd dose of mRNA vaccines: A Higher Antibody Response Is Generated With a 6- to 7-Week (vs Standard) Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) Vaccine Dosing Interval (12/09/21)
A CDC study stated that more cases of Guillain-Barré syndrome were being reported after the Johnson & Johnson vaccine compared to mRNA vaccines. (12/11/21)
Not vaccine-specific but interesting: Persons aged <18 years with COVID-19 were more likely to receive a new diabetes diagnosis >30 days after infection than were those without COVID-19, “SARS-CoV-2 infection might lead to type 1 or type 2 diabetes through complex and differing mechanisms”. Mentioning this study because type 1 diabetes is considered an autoimmune disease. (1/8/22)
The above photo that Tom Schierlitz took of my hands was taken in NYC many moons ago during the height of my hand modeling career. While looking for a link to share some of Tom’s other beautiful still-life work, I discovered he died in 2018. Rest in peace, you crazy mad genius.
![In the coming days and weeks, I’ll be sharing some tips and tricks to help you get unstuck - no matter the circumstances of your stuck-ness.
This is the second in a series - if you missed the previous post, see my blog (link in bio).
Here’s the first tip:
Get in touch with your body.
Stop for a moment and check in. Where are you holding tension right now? Some common places we hold tension are:
the jaw
the neck
the gut
the shoulders
Or there might be pain somewhere, like a headache, backache, eyestrain/pain, etc.
I invite you to notice this pain or tension.
Be with it. Breathe into it. Relax into it.
Getting in touch with your body is a brilliant way of not only teaching yourself how to relax but also helps you to be present.
And becoming present creates S P A C E. And within that space there is an opportunity to see what is needed.
So: what is that physical symptom telling you that you need? Don’t overthink this!
SOMEthing usually comes up, like:
I need to rest
I need to let go of [XYZ]
I need to get outside
I need to exercise
I need a good cry (this happens often in real time during my coaching sessions!)
Once that need is met, some things might clear up. You might not get completely unstuck, but there is usually a shift that takes place or a relaxing that happens.
The pic of me is when I just woke up from a nap. I was working and feeling stuck.
I checked in and realized I was freaking exhausted. I needed rest, so closed my eyes for a few minutes before getting back to my computer.
You're not seeing the "before" photo, but trust me: what a difference a few minutes of rest make!
(and my hair always looks better after I sleep on it lol)
One thing to note:
Getting in touch with the physical body might be really REALLY hard for some people.
I invite you to be super gentle, and practice this technique with “nonjudgemental curiosity”, and let me know how it goes!
#stuck #struggle #stugglebus #rest #physical #tension #pain #tipstrickstools #swansoncoaching #lifecoach #holisticcoach #wellnesscoach](https://autoimmunenutritioncoach.com/wp-content/uploads/2018/05/435120410_964353791722252_2190116072632110028_n.jpg)
![Something I experience in my coaching sessions every day is seeing people who feel “stuck”.
Stuck in a job they don’t like.
Stuck after graduating from college, working their dream job, not knowing what’s next.
Stuck not knowing what to do now that the kids have left home.
Stuck in a relationship that is no longer serving them.
Stuck in not knowing what to do regarding that big decision looming over them.
Many times these clients say “I just need more tools in my life to figure this out, then I’ll be good”. They want “tips, tools, or tricks” to help them get unstuck.
In other words, they want information.
The thing is, there’s a sh*t-ton of information out there. Any answers we desire are at our fingertips thanks to the interwebs.
So why are we always so stuck?!
Information doesn’t help one get unstuck. It can be a starting point, but information alone will not get one unstuck.
Doing the [sometimes hard] inner work is what gets you unstuck.
Understanding yourself, your beliefs, your emotions, your body, how you think and act the way you do - and *why* you are doing any of it - including being stuck - is imperative to get unstuck.
And this is what coaching is all about. To help you better understand yourself so you can make different choices moving forward.
Over the coming days and weeks, I’m going to share with you some things I discuss with my clients in the first or second session to help them better understand themselves and how they move through this world.
This awareness helps them become UNstuck.
Yeah, they might be called “tips and tricks and tools”, and you can absolutely self-coach yourself using them. It is sometimes easier with a facilitator (e.g. a coach, therapist, or spiritual advisor), but if you are willing to go deep on your own and be honest with yourself, I invite you to play around with these techniques.
So stay tuned!
In the meantime:
Are you feeling stuck?
What has helped YOU get unstuck?
Would love to hear from you.
#stuck #struggle #strugglebus #lifecoach #holisticoach #tipstrickstools #swansoncoaching](https://autoimmunenutritioncoach.com/wp-content/uploads/2021/09/434572858_963909818433316_8140446297598528977_n.jpg)
I was also required by my job to get the vaccine. I have had Covid twice before receiving the vaccine. I have had hashimotos for years, but required medication 6 months ago while postpartum with my son. I just received my second dose 2 weeks ago. For two days following I was a wreck! Fever, headache, neck pain, couldn’t get off the couch fatigue. This slightly improved, but I have continued to feel completely exhausted and depleted since then. I am skeptical that my previous infections as well as the fact that I have not fully healed from my flare post partum has contributed to how I feel now. I spoke to my work about my concerns due to my recent issues with my thyroid as well as the fact that I already had Covid, and they did not allow for any accommodation. It has been beyond frustrating as I am trying to heal and feel this has set me back. Thank you for your post.
P.s. I saw you mentioned being from Wisconsin. Any recommendations for a functional medicine doctor in the area? I have one now , but am not entirely satisfied.
Hi Anna and thanks for sharing your story – I’m sorry it’s been frustrating for you with this setback. : /
re) doctors, I am currently seeing Dr. Sarah Zielsdorf who is outside of Chicago. She does telehealth but requires one visit in-person per year. Def worth the trip. She can be found here: https://motivatedmedicine.com/ Tell her I sent you! 🙂
Sandy,
I was mandated by my hospital employer. I have Hashimotos and adrenal failure. I got the first dose of Pfizer and in two weeks time I contracted Covid. I went a year without the vaccine and work in a lab where I did the testing and never got sick with anything. I have refused the second dose, but unfortunately I have extreme headaches everyday and I have gotten sick with various illnesses about six times.
I wish I had never gotten the vaccine . I am trying detox methods and I hope to recover.
Hi Joan – I’m so sorry you have been experiencing all that you are. 🙁 Please keep us posted on your recovery and your methods..!
Sandy
HI Sandy,
Thank you for sharing this! I wanted to share my experience in hopes it can help others in the same situation.
Even though I haven’t been diagnosed with an autoimmune condition 100%, through my life I’ve had a series of reactions to vaccines, medications and even natural supplements!
I was terrified of getting the Covid vaccine, based on my medical history and allergies I was scared, confused and created tons of scenarios in my head from bleeding internally to getting superpowers and everything in between.
After doing my own research, talking to my doctor and my naturopath I ended up getting Pfizer and if it makes you feel any better, I got my second dose in June and so far so good (although I’m disappointed I didn’t get super powers)
Two Factors that played a huge part on my decision was that I was required to be vaccinated in order to go back to work over the summer and the second one, to be able to travel and see my mom and brother sooner and hopefully safer for my mom who’s at super high risk with her lung condition.
Hope this helps and to anyone reading this stay safe, healthy and strong
Hi Jinora! thanks for sharing your experiences. I’m glad it all worked out for you despite not acquiring any airbending (or other) powers…
😉
Sandy
Sandy- Thank you for your informative post. You make very valid points each of us should consider. My husband is currently undergoing a series of studies, blood work and will have a spinal tap/lumbar puncture to help confirm that his symptoms are tied to an auto immune disease. Prior to the second dose of Moderna he has zero symptoms. With 2 months, he reported cold hands and feet. Initially, he thought it might be due to a new BP med he started. He went off of it ASAP and yet the symptoms persisted. His primary care doctor felt he should see a neurologist. After loads of blood work, and neurological tests, the doctor feels he has an incredibly rare auto immune disease along the lines of MS or Guillain-Barre, but not them. He will be having a spinal tap to help pin point the exact diagnosis. After our research , we strongly believe he as been affected by the vaccine. We are not anti-Vaxxers, but have been concerned about the rush to get this vaccine out. We hope this will be something that can be managed and reversed. At this time we will not get the booster. I wish everyone well as we each make these decisions.
Hi Andrea! Thanks for sharing this; I’m so sorry your husband is experiencing these issues. Please do keep us all posted on his progress – I hope whatever is happening is temporary.
Thanks again,
Sandy
I got the J&J last March. Had a sore arm, and one day of very much tired. Third day later had the worst sciatica I ever have experienced….lasted 8 weeks, had trouble sitting in a car and walking. Enjoyed your article, went thru many of the same thoughts and emotions as you did. I have had Hashi’s for about 14 years, have tried many protocols, doing well now. Now with this “second shot” recommendation–I am dreading it. Still on the fence about it. Have heard one other person had this bad sciatica experience. Have not gotten Covid, as far as I know. It’s sure a personal decision.
Hi Sue – I appreciate your thoughts on this. I’m so sorry about the sciatica, but am glad it was “temporary”. Doesn’t make it any less scary at the moment. :/
Sandy
Also — during the pandemic quarantine period before vaccines were available and during the weeks leading up to the vaccine, we followed a supplement protocol for Covid prevention and vaccine tolerance. It included zinc and quercetin as well as NAC, Vit D, Vit C in the form of rose hips, vitamin A, etc. I do not have the whole list in front me of but I know the quercetin and zinc were integral. Again, my daughter and I, both with Hashi’s, had no side effects from the vaccines aside from a day of mild fatigue with the second shot. I can’t prove that the supps helped but we are feeling good.
Thanks for this as well, Gail – sounds similar to the IFM protocols linked above! Glad you are feeling good!!
I have Hashimoto’s as does my 16-year-old daughter. We work very hard to optimize our health. Her thyroid labs are optimal but her antibodies are still high and her weight and energy are a struggle. I am really good — antibodies nearly or in remission, labs good. We both got the Pfizer shot. We felt nothing at all for the first shot and nothing but minor fatigue for maybe a day, if that, with the second. I feel so relieved having some protection. I know Covid long haulers and it’s nothing to dismiss. I know very very health individuals who suffered severely with Covid and relatives who are young and 100% healthy who are now suffering with long haul — DEVELOPED Hashimoto’s after getting Covid, as well as POTS and a second autoimmune disease. She also has yet to regain her taste and smell and it has been over a year since she had it. I felt that the vaccine was much less of a risk that throwing the dice with Covid. Most of the people in my life have been vaccinated and I do not know a single person who has had a negative reaction. Some of those I know are fellow Hashimoto’s sufferers. Stay healthy everybody no matter which path you take.
Hi Gail – thank you for this thoughtful reply, I appreciate your sharing. So glad you or those in your life have not had any negative reactions, that’s good to hear!
Many thanks again,
Sandy
After I had my first vaccine my Thyroid’s antibodies had dropped to half, so it was beneficial for me with Hashimoto.
So glad to hear this, Manijeh! Thank you for sharing.
Sandy
Just wanted to share my story too. I was diagnosed with Hashimoto’s 14 years ago but with diet, exercise, plenty sleep, the right meds and avoiding my known triggers, I am blessed to live mostly symptom free. Unfortunately, despite being extremely cautious, I contracted Covid almost a year ago which in turn triggered the worse flare I have had in a decade. And on top of the symptoms, I started having trouble breathing which led to steroids and antibiotics. All in all, I am fortunate. I was never hospitalized and I am OK but it has been a very long road to regaining my former health. Once I started feeling somewhat like my old self, I made the decision to take my chances with the vaccine , hopefully avoiding ever going through that situation again. I did react to both shots – fever, chills, headache, nausea- but after about 48-72 hours, the vaccine side effects were completely gone. I know everyone reacts to covid and the vaccine differently but for me, I believe vaccination is the best option.
Greetings and thank you for sharing your story! I really appreciate hearing from those who have had Covid – I hope your health continues to improve as time goes on and any long-term effects of the virus will dissipate. I’m glad you did ok with the vaccines too and were happy with your decision (and didn’t experience any long-term effects!).
Thanks again,
Sandy
I had the Pfizer vaccine after lots of reading and lots of VAERS searching, last April/May. I had a 3+ month long flare of brain fog and eczema with my Hashi’s — my two most common symptoms — after the second shot. The brain fog was particularly severe. I too take decent care of myself — not as well as you do, but better than most with autoimmunes. I will be interested to hear how it goes for you after waiting 12 weeks.
Hi Heather, so sorry about the flare. 🙁 You are doing better now, it sounds like? I do hope so.
Thanks for sharing here!
Sandy
Wow, what a great post with great perspective. As I was reading I kept thinking…this is me..I could have written almost the exact thing (not as well, mind you, or with as much detail) but so much is similar to my story! I was diagnosed with Hashimotos 11 years ago. It wasn’t severe or debilitating..just had TSH numbers creeping up and was more tired than usual. Started on synthroid and immediately had swelling and tingling in my feet, which had never occurred before. I was referred to an endo, who just played with my dose but nothing changed and it was hard to get regulated. Went through countless tests over the next few years and saw many specialists..rheumatologist, neurologist, gastroenterologist, cardiologist… the works. No one could explain my tingling issues, but they did discover some antibodies present which are found in lupus, rheumatoid arthritis, Sjogren’s patients. The first two illnesses were ruled out but Sjogrens was “inconclusive” . I have no other Sjogren’s symptoms.. Rather than taking a medication to treat a symptom, I made it my mission to educate myself in how to be the healthiest version of myself I could be. I found an Endo who was willing to let me try desiccated thyroid meds (which immediately regulated my thyroid. I drastically changed my diet, worked hard to lose 35 pounds, stuck to a gluten free diet for 4 years which essentially healed my gut as I have no issues now with gluten (I used to be exhausted for a day or two after eating it). I managed to put my “mystery disease” into remission according to my antibodies and my symptoms. My hair stopped falling out and is growing fast and thick, my energy levels are great, my skin is healthy., and I haven’t been sick with anything more than a little sniffle in many years. But now the vaccine pressure! I am terrified to mess things up that I have worked so hard for so long on. I take many vitamins and supplements and follow the Covid protocols faithfully to be as healthy as possible. But the walls are closing in and I feel so much pressure to get vaccinated. My job has not mandated it yet, so I’m ok there, however where I live you are treated like an outcast if you don’t have it., and medical exemptions are not issued, period. Vaccine passports are mandatory to do pretty much anything here including travel, eat out, attend any type of function. My mental health is struggling way more than physical.
I feel so sad for you that you felt coerced into putting something foreign into your body for the purpose of keeping your job. That is so wrong. There is something deeply wrong with our society for forcing this on people. They know that the vaccine is still experimental; it’s been approved for emergency use only, and have admitted that it hasn’t worked as well as they had hoped, yet they are forcing it on the general population, even young children now. It’s just so upsetting to me. I have absolutely nothing against vaccines, when they are used responsibly and tested thoroughly. The adverse reactions are all but ignored or downplayed. All the best on your journey and your future vaccine(s). We know that two wont be enough sadly.
Hi Laurie – wow, similar paths indeed! That’s great about your doctor, meds, diet, gluten…. all of it! I so feel you re) the pressure for getting the vaccine and the feeling of being an outcast. It’s a stressful way to live – as you say, the mental health piece of the puzzle can have a much louder voice during these times…!
Sending you deep breaths and peace to help you if the walls continue to close in. Sending them if they don’t! 🙂
Sandy
I was mandated by my employer to get the vaccine… I did alot of research and thinking on this vaccine, I decide my almost 10 yrs at my job and the financial demands in my life to go against my opinion on vaccine. I was off of work almost a week both times… I unfortunately have had nothing but issues with inflammation, joint and muscle pains , low grade fevers, and fatigue. (Hashimoto’s flares ) I am so let down by lack of answers for people with autoimmune issues on what I am going through. My Hashimoto’s has never been this aggravated .
Oh Elizabeth, I’m so sorry to hear about your reactions to the vaccine. 🙁 I’m with you on the lack of answers. Hopefully, the research will continue, and hopefully, you’ll pull through this.
Please keep us posted on how you are doing,
Sandy
I have Hashimoto’s and Celiac. I had the first Pfizer shot and had heart complications. I’m wondering if anyone else with AI has experienced this also?
Wondering as well, Meredith. I’m sorry you are experiencing heart issues…. hoping others chime in with their experiences.
Sandy
Hi, I have Hashimoto’s and Celiac as well. I first got the J&J and had one flu-like day and then about two weeks of brain fog and fatigue after, so not too bad. Then I got a Pfizer booster several months later. I had a much, much stronger reaction to the Pfizer shot, which included almost every symptom possible to get with the shot, like high fever, sore throat, shortness of breath, headache, nausea, and did also include elevated heart rate and occasional chest pain for about 5 days after vaccination, as well as a myriad of other symptoms like weight loss, period changes, skin issues. I had brain fog and fatigue for two weeks after and, more concerning, joint pain and vein inflammation in my legs for about 5 weeks post-vaccination that was painful enough to prevent me being able to run for those 5 weeks. These are symptoms I haven’t had since I used to have severe flares before I got my Celiac under control.
I am boosted through March, but my doctor doesn’t advise getting another mRNA shot after this experience since it took me so long to recover from the Pfizer. She thinks I should stick with J&J only from now on if we keep having to get boosters. The good news is my autoimmune blood work is all still negative even after the shots, so it didn’t cause a longterm worsening of my disease, which I am really happy about, but remain concerned about a future in which I have to experience this kind of severe reaction every 6 months or remain very isolated to prevent catching Covid.
Hi Christiane – thank you for sharing your experiences, I appreciate your taking the time to write out your thoughts. Do keep us posted if you decide to get another booster!
Sandy
I received my first Pfizer dose in March and second in April. I have Hashimotos, and work with a functional Medicine dr, but I was not managing my health well at the time of vaccination due to being a new mom. I am happy to report that I have not felt or observed any negative side effects whatsoever!!!!! In fact, my labs have shown improvements as I’ve returned to healthier practices. I am grateful for the opportunity to get the vaccine and we are getting our boosters today.
Hi Erin – congrats on the baby! Happy you have not observed/felt any symptoms that could be vaccine-related. Appreciate your sharing! 🙂
Sandy
Thank you so much for sharing with us the incredible investment of time you have made in your self-care and this hugely important decision.
I’m sitting here reading this 48 hours after receiving the J&J vaccine. My story is a junior version of yours. I have been home since March 13, 2020, going to the store, doctors appointments, and the pool. I have not had guests over. I have not been in anyone’s home. I have been to exactly one gathering in a fairly well ventilated space. I have taken good care of myself as I manage my Hashimoto’s.
I consider myself fortunate that I work from home and could avoid the vaccine. Unfortunately, my employer, a company I love to work for, has put a mandate in place and I was faced with a decision. I figured it would come to this at some point, but I was hoping it would take longer, and that perhaps mandates would be struck down as unconstitutional across-the-board.
As I sat in the dark, dingy room at the hospital, along with dozens of other people, I felt like a sellout. I was disappointed in myself for not standing up more fiercely for what I believe. It all came down to a great job and a great paycheck, and I was willing to give up some of my rights to my personal vaccine choice, in order to continue my secured income.
So far, other than a slightly off stomach, and feeling a bit more joint pain, I have an absolutely no reaction. I am a woman of faith and have put my trust in the Lord to protect me. However, I am also a very practical individual and I’m following my own protocols and doing the best to take care of myself.
Your post has helped me to feel like less of a sellout. Thank you.
Hi Deb… yeah, I hear you about the job and a paycheck. And sorry you felt like a sellout. 🙁
I’m glad my post was helpful for you in your process – thank you for sharing,
Sandy
Hey,
Thank you for writing all this and letting us get an insight of your thoughts and thought process!
I went through a lot of anxiety getting my first shot in January. At first, when the thought of a vaccine started becoming real sometime late Fall last year,I was sure I wasn’t gonna take it. Not with my autoimmune diseases (also Hashis). I was scared. I started looking into the vaccine and followed process closely. And by the time I was eligible I felt like I had to take it. It was the best option for me. I work as a teacher and I go out daily, commuting and meting tons of kids every day.
I was nervous about getting the shot but once I did I felt happy about it. Still we don’t know about long term effects, however witnessing people’s struggles with Long term effects of Covid …. I wouldn’t want that either. We don’t know the full scope of that either….
Again, thanks for all your thoughts and also for being brave enough to change your mind.
Hey Lena – you are most welcome! Sounds like you two considered everything that was available to you before making your decision – glad to hear you were happy about your choice. 🙂 That makes a huge difference!
Appreciate your sharing,
Sandy
Thank you for sharing your research and experience. I am fully vaccinated. It was a very hard decision for me due to having autoimmune diseases. I work in healthcare and I felt like the vaccine was something that I needed to do. I had my first vaccine in January 2021 and my 2nd 5 weeks later. I had the Moderna.
My first dose was the same as most people. I had a headache and sore arm. I was very tired. My 2nd dose was very different. I was very sick. I had a temp of 102°. I was shaking and I hurt so bad. I also take my health very seriously. I was unable to workout for 10 days. When I walked up the stairs, I was out of breath. I was dizzy for about a month. I started to get heart palpitations. Then I had an event that was very much like a stroke. The ER diagnosed me with TIA. After months of different tests my neurologist told me he thinks it was a migraine. I wore a heart monitor for a month, EKG’s, echo Cardiogram, stress test, 2 CT scans, 2 MRI’s. He still has me take aspirin daily, as he is not 100% sure.
Since then, I have new joint pain and swelling in my hands. I was newly diagnosed with Sjogrens and they feel I have another autoimmune immune disease that is not yet known. (Previously just Hashimoto’s and Reynauds)
I have a hard time believing they are not related to the vaccine. It is frustrating that none of my doctors will even allow the discussion that it could even be related to the vaccine. I regret my choice and I will not be getting a booster. I still believe that everyone should make the decision to have the vaccine based on their own health and lifestyle and I support my friends and family that choose the vaccine.
Hi Shelley – I’m so sorry you experienced the reactions you did with that 2nd shot. This must have been so scary for you…
Scroll down to read an Anonymous comment – that reader experienced the onset of FIVE new ai disorders after her vaccine. !!! A few months later (of good eating/living/etc) she is back to Hashi’s only.
Sharing in hopes that it may help you through this time… perhaps the same will be true for you? Please do keep us posted and thanks for sharing your thoughts. <3
Sandy
I really appreciate the hard work and thought that went into this article, amazing!
The only reply I have besides kudos to you is I didn’t hesitate to get the shot for my own personal reasons including I share my home with an 80 year old.
I felt yucky the next day after getting all 3 Pfizer, yes 3. I appear to be “normal.”
Thank you for everything you do! This group had really helped me and thousands of others.
Hi Paula! Appreciate your note and also for sharing. Glad you are feeling “normal”! 😀
Sandy
Thank you for sharing. I’ve been very hesitant, going back and forth on this decision. I got extremely ill from having breast implants, so everything scares me now. I’ve had to work my butt off to heal, and I’ve learned so much about my body during the process.
Will they give you a hard time for waiting 12 weeks between doses? How did you determine that 12 weeks was better for you?
To say “I hear you” about going back and forth is an understatement.
In answer to your question, not sure about them giving me a hard time. I guess I’ll find out! 12 weeks between 1&2 is what some other countries have been doing; the antibody response looks to be good. I’ll be starting my in-person job soon after so wanted to be best prepared for those months following my 2nd shot.
More here: https://www.youtube.com/watch?v=g5et5LIIN-8&t=1869s
Hope this helps!
Sandy
Sandy
Hi
Fantastic read! You touched so many things that have been running in my mind. I have Hashimoto’s. I am also a nurse. I will admit I was a little nervous getting a new vaccine but because of my job I felt I needed it. I also wanted it. I had my first dose in Dec 2020 and my second 3 weeks later in January 2021. First injection I felt fine except a sore arm and little headache that only lasted maybe 12 hours. Second injection I also had aches and pains and a low grade fever but after 12 hours I was fine. I just had my third dose, a booster, last week. I was down for a full day with fever and aches and pains but the next day I felt fine. I don’t feel like any of my three injections caused a flare of my Hashimoto’s, which I am grateful for. I can name 25 things that can easily put me in a flare. I am anxious to see what science will teach us in the future on this subject.
Thank you for your kind words, Christine! Nice to hear the perspective of someone in the medical field. Really appreciate your sharing your experience.
Sandy
Thank you so much for this very enlightened and informative blog, as well as sharing your personal thoughts, and for all the resources. I have been in a quandary about the vaccine since I got my first Moderna dose in February, 2021… and reacted. I’m a hyper-reactive person (have had decades of experience) and I was quite terrified going in to get my shot, to say the least. I’m also a very cynical person, tending towards pessimism (working on that), but made up my mind to psych myself up and told myself that I was “doing the right thing” for myself and my community.
After getting my first dose, I experienced nothing other than a slightly sore arm for a few hours, and to say I was extremely pleased about that is an understatement. I, too, have isolated myself since day one of the pandemic. I have not seen people either outdoors or indoors. Period. I walk my dog at 7 a.m. and then I’m home for the rest of the day, amusing myself with various activities. Every third week, I go to a large supermarket on Sunday at 6 a.m. when there are about a dozen people in the store. With this isolation in mind… On day 5 after the vaccine, I got up from the couch and almost fell to the floor in excruciating pain in my right rib area. My initial thought was “costochondritis”. Then, I had a lot of trouble breathing. I stood there frozen for a while, tried to mentally calm myself, and sat back down trying to figure out what I should do. I was afraid to go to the ER… and get covid there. The pain eased up ever so slightly about an hour later. I spoke to my PCP the next morning and she scared me into going to the ER asap, which I did. D-dimer was negative for pulmonary embolism, but a CT scan was done, which revealed a pleural effusion (fluid in the lining of the lung). P.S. I televisited with a new pulmonologist, who said there was nothing to be done as the amount of fluid was very small (hard to believe it was so painful). Normally, the fluid would have to be drained with a needle into the lung. It took several weeks to get back to my “normal”.
About a month after that (still in isolation at home), I had an EBV reactivation. I suspected this immediately from the swollen and full feeling glands in my neck. Blood tests confirmed the reactivation. I had an almost life-threatening case of infectious mono decades earlier , but hadn’t had swollen glands since that time, until this occasion. The CT scan also showed that 3 thyroid nodules, which I had biopsied back in 2014, had grown in size, and re-biopsy was advised. When I had the repeat biopsy done in June, 2021, the diagnosis of Hashimoto’s thyroiditis was made on ultrasound.
I truly believe, deep in my heart and gut, that these three medical events were precipitated by the Moderna vaccine. With the diagnosis of the pleural effusion, I was advised by the pulmonologist not to get the second Moderna dose. I didn’t need his advisement on that — there was no way I was in any physical shape to go and get it anyhow. While I have known for a long time that “something” has been going on with my immune system, again, I believe the vaccine made the Hashimoto’s apparent. Sometimes I think I might have bought a few more years without it becoming apparent if not for the vaccine.
I am in a quandary now. I desperately WANT to be vaxed, but I’m absolutely TERRIFIED at the same time. So far, being terrified has immobilized me to do anything. I have consulted via televisit with my PCP, an Infectious Disease specialist, Functional Medicine Nurse, and each one has a different opinion about getting the vaccine, leaving me more confused than ever. I had what I thought was a great idea — I had asked my PCP if I could get the children’s Pfizer dose (1/3 of the adult dose), so that if there is a reaction, it will be much less severe. My thinking was that 1/3 of a dose is better than nothing. Of course, she immediately nixed that idea, saying, “That’s not protocol.” Well, what else would you expect from a traditional western doc? Yes, I’m in the process of searching for a new one — someone who can ‘think outside the box’.
Sandy, I’m nowhere near your level of health and commitment to all the facets of living a healthy lifestyle. I’m trying, though, but I don’t know even if I reach your level whether I would ever feel as confident about my “natural immunity” against this and other viruses. I fear that I will turn into a recluse because above all, I fear getting sick and being at the mercy of doctors. I don’t want to be the “weirdo” who, a year from now, is still wearing a mask, but I fear this will be the protocol for the rest of my life.
Cindy, thank you for sharing your story. I want to acknowledge your courage for getting out there to get the first shot, and I’m so sorry that you experienced all that you did post-shot. The pleural effusion you describe sounds painful – and frightening.
Your perseverance and creativity are also to be commended; I really hope that you can find a doctor who will listen and work with you “outside the box” as you so aptly put it – getting the children’s dose? Very outside the box. 🙂
I really appreciate your taking the time to write all that you did. Please keep me posted on what happens and how you move forward!
Sandy
Wow, long article but good! You did a lot of the research I don’t have the time and enthusiasm for, but I’ve done plenty. I kind of reached “saturation” a few months ago and decided I couldn’t keep following this topic, at least not closely. Tired of it! Personally, I can’t understand the huge push for vaccination when the pandemic is clearly winding down. I feel like almost everyone has either had it or been exposed to it by now, it’s now endemic, the vaccines seem to become less effective every week, and we need to get back to normal life already…for so many reasons. Some of the experts I’ve heard have pointed out some of those things, and also said the original virus is long gone, all we have is variants, and as viruses mutate they always weaken. Hence, why the Delta variant is less dangerous although more contagious. Makes sense to me.
I thought it was odd that you explained so many reasons not to fear the virus and to be cautious about the vaccine, then decided to go for it. I feel most people are acting purely from fear that often is not rational (hopefully not you). But as you say, it’s a personal decision and we are all unique. Since I’m so leery of almost all medical procedures, knowing that virtually none of them come without risks, the fact that the current vaccines were developed at lightning speed, are like nothing else ever used, and that long-term data won’t be available until the “long term” has elapsed (surely at least 10 years) makes me even less likely to put confidence in their safety and usefulness than all the OTHER vaccines I already don’t trust. Many of which I think contributed to my Hashimoto’s, since I lived overseas and had more than the average American child, as we traveled back and forth several times. Plus every year in school, we lined up to go to the nurse’s office for whatever was required, including, of course, tropical diseases that US kids weren’t at risk for. What struck me years ago was someone making the point that when a substance is injected directly into the bloodstream, it bypasses all the organs and systems in our bodies that are designed to detoxify or at least lessen the impact of various chemicals. I prefer to give my body a fighting chance!
Sorry for the ramble. See why I needed to stop reading about this? Ha…. Was there a reason you didn’t mention the safe effective protocols for the virus that are available through doctors like the FLCCC network? Even Dr. John Campbell on YouTube who is normally very mainstream has done some excellent interviews and analysis of ivermectin and other things that only get abused or ignored by the mainstream press. Check out his interviews with Dr. Tess Lawrie, another MD. These are not “alternative” or unqualified doctors.
You talked about a vaccine mandate and suddenly being forced to work with other people, then said, “Even though I still have confidence in my own immune system and its ability to fight off viruses, I don’t want to be responsible for passing along the virus to someone who is not as healthy as I am.” But vaccinated people are continuing to get sick and pass on the virus, so…? Doesn’t make sense to me. BUT I surely hope that you and millions of others will NOT end up with problems, or that if you do, they will be reversible. I am very sad about the injuries I’ve seen. Dr. Campbell recently interviewed Kyle Werner and linked to this site: https://www.realnotrare.com/
Okay, stopping now! Thanks again for your very comprehensive post!
Hey Diane! nice to see you on here.
I’m very tired of researching too, but, trying to keep on top of it. It’s a lot to weed through. I didn’t mention a lot of things due to brain overload and space and time. There’s a lot I missed and a lot I deleted/left out. Tried to keep the focus on the autoimmune.
As stated in my post, my work/life/home situation changed . I don’t believe I would have gotten the shot had it not been for a mandate. Had to take ALL things into consideration.
I don’t think I said I would be “suddenly forced to work with other people”. I am choosing to go back to work with others. I didn’t have to return to this place of work. The only forcing was of the decision I has to make due to a timeline; that was of my choosing as well.
Yes, agree that vaccinated AND unvaccinated people have the potential to pass along the virus. Unfortunately, there are those who might point a finger at the unvaccinated should an outbreak or something occur. That probably could have been worded better.
Will check out the resources you mentioned, thanks for sharing those. I appreciate your taking the time to read this very long post – and for writing out your very long “ramble”!
I hope you are doing well,
Sandy
I relate to everything you’ve written here. The cliff analogy. The confirmation bias. Everything. I have Hashimotos (and Lyme Disease). And thankfully I have a very good doctor too. I have gotten my health situation under control with years of work – and consider myself a long way from the edge of the cliff.
Unfortunately though, my exposure to COVID has always been high because my husband is an essential worker. When the vaccines first came out, the solution for our family seemed simple. My husband would get the vaccine and protect myself and our kids (one of whom has asthma) from his daily exposure while the kids and I continued practicing the Swiss cheese method of protection.
But then we realized vaccinated people could still spread the virus and my doctor started lobbying for me to get vaccinated myself.
I do not exaggerate when I say it was one of the hardest decisions I’ve ever made for my health. My doctor knew there were risks to the vaccine for me, but he also knew my exposure through my husband was high and felt strongly that the benefit of the vaccine outweighed the risks.
I can very happily report that I have been fully vaccinated for almost 5 months and have not had any complications or flares with my underlying health issues. My thyroid antibodies 2 most after full vaccination were the lowest they have ever been (in the 40s) and they were just checked again this morning. I feel as good as I felt before the vaccine and have no reason to believe any other health issues have been triggered. I actually attribute a lot of the good results I’ve had thus far with the vaccine to all the work I’ve put in over the years to get me “off the cliff.”
I don’t know what the future holds for my health obviously. But for now, I’m in great health and am much less stressed about my daily exposure to COVID. It was what was right for me and my situation and if there are issues that arise in the future, I’m mentally prepared to tackle them. I made the best decision I could with input from a doctor that knows my health and that’s really the best any of us can do.
Thank you for sharing! It makes me feel more “normal” (if that’s possible, lol) that I was not alone in this decision. Agree that it was one of, if not THE, hardest decision for me and my health. Ever.
Appreciate your taking the time to write, and glad you are doing well 5 months on!
Sandy
Just wanted to add that I have also had a very positive experience (no side effects or triggers) and have been Fully vaccinated for over 7 months. My antibodies have dramatically improved and are the lowest they have been in years.
I just wanted to drop a note to say I enjoyed this post! At some point I saw some of the UK data on their immune responses with the longer waiting time between doses and I wish I had known that prior to getting mine (Pfizer). Happy to see you’re going to benefit from that info.
I had no issues with mine, although I have yet to do blood work post-vaccine. But I did a round before hand so I (eventually) have something to compare to.
I had practically no traditional side effects from the actual shots (outside of a slight headache after dose #1 and a sore arm for both doses), not even after the 2nd dose – which was unnerving since I expected something.
Thank you for publishing such a thoughtful post.
I CANNOT thank you enough for this very timely article!! I have felt and still feel every single thing you have described in your blog post. I too have struggled with this decision for a very long time, and have chosen not to vaccinate just yet.
I had what my doctor 99.9% believes was COVID back in March of 2020, before testing was available. My husband’s boss came to work sick coughing on everyone, and within 3 days, 18 out of their 22 employees were laid out flat with it. My doctor said no flu he’s ever seen could’ve knocked that many people out that quickly. My husband (who does not have any autoimmune conditions) came home, started out a day later with a sore throat, got massive body aches and chills the following day, and within 48 hours had a 103 fever for about two days straight.
I was so busy taking care of him, that I didn’t even think about myself. I (the one who has the autoimmune condition) actually didn’t get it quite as badly as he did initially. I had a ton of mucus and nasal drainage at the back of my throat, but continued my meditation, affirmations, and yoga daily, continued eating healthy and taking my supplements, and steamed myself several times per day to try to keep things thinned out and prevent them from going into my chest. I never had a high fever, but rather a low low grade one (like 99.1 or 99.2) along with intermittent chills for a few days in a row. After 14 days had passed, I began to feel myself again….
BUT six months later, at the end of September, I began getting such debilitating joint pain (which is a symptom I have NEVER had with Hashi’s before), to the point that I couldn’t even hold my mug in my hand. I couldn’t even lift my left arm up. I felt completely fatigued, and had joint pain everywhere. It was very scary.
When I went to see the doctor, he ran a ton of bloodwork, and ironically my thyroid labs came back normal, but my blood counts were abnormal as though my body were getting over an infection, and I ended up testing positive for five different autoimmune diseases! I thought my life was over, done, kaput. He kept telling me he thought it may have been as a result of the COVID infection, and that it created a storm throughout my immune system, and he was confident since I am so strict with my wellbeing and diet, that it would eventually clear out. Luckily, he was correct. And three months after that, all but one autoimmune (my original Hashi’s) had completely left my body.
For that reason, after discussing with my doctor, we believe I should hold off on getting the vaccine. Neither one of us is too eager to potentially catapult me and my immune system back into a storm like that, at least not willingly. And with me mostly working from home these days being self-employed, and doing the social isolation, masking, sanitizing, and every single other safety precaution, believe me to be at a fairly low risk of contracting it again. The plan is to wait until more data and studies are conducted on actual autoimmune patients before revisiting the idea again. Plus that will give more alternative options (such as monoclonal treatments, antivirals, etc.) time to hit the market while herd immunity continues to increase.
Anyway, just wanted to share my personal experience with you, and thank you from the bottom of my heart, for putting into words every single thing I have felt while navigating this very same journey. Different outcomes between the both of us, but the same emotions and feelings nonetheless! Thank you, thank you, thank you!!
Peace and blessings to you.
WOW and holy cow…. FIVE ai diseases after Covid?!? :O
So glad you came out the other side relatively “unscathed”. Too bad the Hashi’s didn’t leave as well. 😉
Please keep us posted on your health and your decision, and thank you for sharing your story. <3
Sandy
Oh gosh. I’m SO SORRY that all that emotion accompanied you into the shot. I had a TON of emotion but mine was the exact opposite–utter relief. Oof our minds and those darn beliefs.
I hope you’re able to find peace in the decision, sit with it, and ultimately forgive yourself for the best decision you could make given the information you have. We’re all just doing our best and this is hard as heck to navigate. Be kind to you.
I have hashi’s and was well into taking charge of my health when the shit hit the fan in March. I’d been watching closely since the first pin prick of WTF came out of China in Dec, so I felt well-armed going in. I had a straight up melt down in the beginning because I knew I wouldn’t survive the virus. After a year of quarantining and being METICULOUS with food, exercise, toxins, etc, I knew my body could handle that vaccine and would APPRECIATE the blueprint instead of being so willy-nilly about what it attacks.
My first shot was like yours, tired but okay by day 3. (Pfizer). Second shot took me longer to recover and the fatigue was 10x. Booster wiped me out for 3 weeks but that’s because NO ONE respected my boundaries–i was home off an emotionally hard trip with zero recovery, my coparent dropped the ball hard and I ended up with kids the day I got the shot–SICK kids! –and then I got sick. It was a hellish 3 weeks. However….. I’m feeling back to normal. No side effects and back to figuring out food and health.
One thing that did help was a saline IV with vitamin c and glutathione. I got it right after the booster shot and it cut my fatigue in half.
Thanks for laying all this out. I think the cliff analogy is great. I wish the news had the airtime to explain those kinds of things instead of sensationalizing them and keeping us all so darn polarized.
In good health. Namaste,
Jen
Hi Jen – thank you for sharing your experience – I appreciate it and I’m sure others will as well.
Also appreciate your kind words re) my experience. I have moments of peace and moments of WTF?!?? lol… sigh. Crazy world we are living in!
Thanks again,
Sandy