Using Gratitude to Adapt to a Newly Diagnosed Condition: Dysautonomia

We Made it Through Another Year

Well, we did it! We made it through another year! 365 days. 8,760 hours. 525,600 minutes. 315,360,000 seconds. Quite an accomplishment, in my opinion, especially when a good many of us could only get through some of those seconds and minutes with clenched fists and clenched teeth. But we did it!

I hesitate to wish my survivor friends a happy new year because I know 2023 is going to be difficult, even if there are happy times. And it could be a terrible year, worse than 2022. So I compromise and say, “I wish you a safe, healthy(er), happy(er) new year.”

That wish is now going out to all of you reading this!

So Cute

https://www.theguardian.com/artanddesign/gallery/2023/jan/07/balloon-animals-beyond-the-poodle-in-pictures

Spencer is Fine 

For those of you who have just started reading my blog, I adopted the beautiful cat you see lounging in the header. We have been together now for three months. He is still very timid and spends a lot of time hiding. Once, I couldn’t find him for four whole days. He still spends so much time out of sight that his nickname is “Invisible Cat.”

Slowly, he’s getting used to being here. Baby step by baby step, he is getting to know his way around the apartment. He is also becoming more social. If he wants to be petted, he’ll let me know by putting his front paws on my knee as I sit at the computer. One day, he even jumped onto my lap – and then instantly exited on the other side. Oh well, maybe he will try again in a couple of weeks.

And I Am Fine – Even Grateful

Well, sort of. I’m old and creaky to start with, and I keep collecting diseases the way some old ladies collect cats.

I recently acquired a new diagnosis: dysautonomia, or autonomic nervous system failure. It’s unpredictable; it comes and goes, gets progressively worse, or mysteriously goes into remission after years. All the things that the body does without conscious thought can be affected. And it can’t be fixed, at least by Western medicine, and at least not quite yet.

These are the symptoms that most affect my quality of life:
     wide blood pressure variations
     inability to adapt to temperature changes
     loss of ability to smell and taste things
     poor balance

So far, I don’t feel rotten. I have to spend more time taking care of myself, which is a drag. But I am happy to say that I have discovered CBD. (I am not an early adopter.) So I bitch about having another disease, another specialist, and new symptoms to adapt to. I also sing with happiness because CBD works on all the different kinds of pain I have. And it is natural, herbal, vegan, and gluten-free. Many brands are non-GMO and organic, too. It has no side effects, as far as I can tell. My doctors all say, “Go for it.”

I imagine that it’s going to be challenging to adapt to this condition. The symptoms can change from day to day, and just as soon as I accept one configuration of symptoms, more will surely pop up.

I don’t know anybody with dysautonomia and therefore have nobody to turn to for information, advice, and comfort. I do know one person who had it, but her experience was very different from mine. She was stung by thousands of tiny jellyfish while swimming in Indonesian waters. The damaged nerves slowly repaired themselves, and, after 5-10 years, she was able to return to work. She even got pregnant and had a healthy baby! That is not going to be my story.

I did find two online support groups, but the members were a lot sicker than I am. I decided I needed a beginners’ group because reading the entries on these groups filled me with anxiety and dread. If I get that sick on down the road, I know those groups are available to me. But for now, there is no point in looking ahead – I need to concentrate on getting used to the present.

I have read that saying positive affirmations can ease the process of adapting to a new disease. It makes sense. The affirmations don’t erase the critical ways of thinking about oneself, but they do create a new set of neural pathways. I could then choose between old cult messages and the newly created ones, which hopefully will be more accurate and helpful. 

I can’t just start telling myself I am fantastic. I have to do it in a way that doesn’t enrage my Inner Cynic, who would argue long and loud and reinforce the old tapes.

Most affirmations, however, feel like bald-faced lies to me. Lying makes me very uncomfortable because, as a child, I had to lie about so many things.  I’m all for laying down new neural pathways, but I have to do it without lying.

I figured out how to contort myself in order to recast affirmations into a form I can tolerate, even if I cannot wholeheartedly embrace them. “Some other people think I am the greatest person in the world.” “I wish that I could honestly say that I am filled with love for my beautiful body.” 

I think I have found a way to solve the problem. I don’t have to choose – I can see different facets of a situation. Negative aspects and positive aspects can exist side-by-side. All I am trying to do is strengthen one set of neural pathways while leaving the other alone.

I can have mixed feelings about things – hate part of them, but also love part of them. Love the rose, hate the thorns.

Look at this:

Situation: I experience wide blood pressure variations.
I am so grateful that they have finally found a diagnosis.
(That’s completely true,  even though it is a sucky diagnosis.)

Situation: inability to adapt to temperature changes.
I have wonderfully warm tee shirts, sweaters, and hoodies.
(Even though it’s annoying to wear layers in the house.)

Situation: loss of much of my ability to smell and taste things.
I am grateful I can easily feel textures and taste salty, sweet, and acid foods.
It is nice not to have to smell the kitty litter box.
(At the same time, I want to smell the roses! and the sweetpeas, basil, tarragon, hand soap, laundry detergent, and my clean hair.)

Situation: poor balance .
I am grateful for physical therapy.
(It had better work. PT is time-consuming, and the exercises are boring.)

I was surprised at how easy it is to find true, nice, kind things to say to myself. There are no long discussions with the Inner Cynic, no worrying about whether I am being dishonest or not, and no getting sick and tired of the whole damn thing. I wish I had discovered how to do this in high school.

I think it’s time to learn more about the process of forming a new neural pathway. Should I say the positive statement out loud? Do I have to use the same words each time? How often should it be said? At what intervals? How can you tell when the brain has made a new pathway? 

Is there a way to train the brain to go directly to positive thoughts, bypassing the negative ones? Is there an instruction manual available? A workbook?

I’m so glad I thought of using affirmations and gratitude statements, made especially for me, to learn to live with dysautonomia symptoms. And symptoms of everything else in life, too. If it works, why not?

Documentation to Increase the Safety of RA/MC Survivors

A Bit of Self-Care

I am so glad I gave myself permission to be late on posts or to skip one now and then. My lateness is explained by my cat’s behavior. Since I am still a bit hysterical, I made an even bigger decision.

After messing up part of the last post’s ritual dates section, I decided I would give myself a break from all that formatting. You can find the Satanic and Nazi calendars on the “2022 Ritual Calendar” page, as well as links to most major holidays described on the blog.

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Would anybody be willing to make the 2023 ritual calendar? You work off the 2022 one. Replace the dates of the full moon. Delete the 2022 eclipses and add the 2023 ones. Change the dates of the moveable holidays, like Thanksgiving and Easter. If you aren’t sure of some of the dates, look them up anyway. Make notes about anything you think might be wrong. Then I will send it on to somebody else to proofread and check the dates.

I would be very grateful – I have been doing this since 1999.

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If you haven’t gotten the October issue of the GrassRoots newsletter and would like to see it, write https://grassroots-ra-mc-collective.org/contact-us/ to subscribe.

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Cats- Bah, Humbug

Spencer, my new cat, is now in hiding. He is a Turkish Van, gorgeous like Baker but terrified of his new surroundings. I had him confined to my bedroom so he could get used to a small part of the house and have a safe place to return to when he started going out.

He slipped out when I was leaving the room, and I spent the weekend wandering around looking for him and crying. His previous owner even came and spent two hours meowing. Her husband crawled around on hands and knees looking under furniture and checking behind boxes of stuff. No cat.

On Sunday, I put food out in every room, and he ate the food in the office! I heard him meow in the middle of the night, so I came and gave him seconds. He had eaten the food in the office but hadn’t scoped out the other rooms. At least now I know he is alive and somewhere in the office.

Last night, he again meowed for seconds in the middle of the night. When I went to give it to him, he had not gotten all the way to his hiding place. I could hear him rustling the boxes under the coffee table in the office. Now I know where he is, or at least where he was last night.

Believe me, I looked there at least five times. Rick, his previous owner’s husband, took out every box and looked through them all. Spencer was, obviously, not found.

I am starting to calm down and trust he will come out someday. Somewhere, deep down, he knows I am a nice person who feeds him and brushes him and pets him where he likes it.

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Documentation to Increase the Safety of Survivors

Ellen Lacter has described in great detail how to create  a “Safety Packet.” You can read the whole article here: https://endritualabuse.org/evidence-packets-increase-safety/

The basic idea is to describe your experiences in detail, naming names, and distribute this document to trusted people with instructions that it should be opened on your death and distributed to law enforcement and the media.

The people who have received the documentation should be given extra copies to distribute to other safe people so that the abusers cannot locate all the copies. And you should say, in public, that you have done this and that the shit will hit the fan if you are killed or disappear.

When you read the article, I imagine you will be overwhelmed by the amount of information you are being asked to put in this document. I imagine that working on it will stir up all your “don’t tell” programming. For me, it wasn’t the don’t the ‘don’t tell” programming that arose. It was the “I’m incompetent and worthless” programming. Either way, working on it will be emotional and challenging.

I did this once, a long time ago. I printed out a short version of what Ellen suggested and distributed it. Today, you can put it on a thumb drive – so much easier!

Here is a summary of what is in the safety packet. It doesn’t include everything, or I would have just posted Ellen’s article in full.

1. A summary of what is in the packet and how to use it.

2. A list of the kinds of evidence in the packet.

3. A list of what the abusers might do to kill or “disappear” you.

4. A list of the people who have been given the packet

5. Instructions to those people

6. A witnessed authorization to open the packet upon your death and instructions for distributing the information contained in it to law enforcement and the media.

7. Evidence, such as descriptions of the abuse, recent harassment, reports to law enforcement, and medical records. A list of the abusers, with names, descriptions, and locations of the abuses. A list of victims, alive or dead, and potential victims, with descriptions and photos.

8. A video recording of yourself answering these questions.

What individuals or groups of individuals do you believe want you dead?
Why would these parties want you dead?
Can anyone support or corroborate that these parties have harmed you?
What methods do you believe these parties use to murder or disappear people?
Do you believe there have been any previous attempts on your life? If so, describe the suspected assailants and methods used.
Are you suicidal?
Why do you want to live?
Under what circumstances would you ever suicide?
Do you abuse life-threatening substances?
Do you have lethal weapons or substances in your home?
Do you drive safely? What is your record of traffic accidents and violations?
Do you have any desire to flee your current home and support persons?

My guess is that some of you are feeling overwhelmed just reading a summary of what to include in the safety packet. I know I am.

I believe you can do it. I believe you can pick the least difficult thing to do and give it a try. Then, when you finish it, give yourself a hug and a reward and celebrate your achievement in your own special way. Rest a bit, and then find the second least difficult thing to do.

I think it would be worthwhile to distribute it before you have finished because the process will be very time-consuming. Looking back over the summary of the safety packet contents, I would choose 4, 5, 6, and 8 to include before distributing it.

But don’t let yourself forget that there is more to do. Remember that you followed your plan of doing progressively harder things, and you have achieved your goal. You have gotten stronger by taking small step after small step. And a huge leap by making the video! Just reading over what else there is to be done has desensitized you quite a bit.

Use the same approach of leaving the hardest things for last. For example, write down the names of your abusers and pick the one you are least afraid of. Then, start filling in the information, again, starting with the easiest item and working up. There is no harm in leaving a mark like ???? or an emoji by an item you may want to skip for now and return to later.

I’ll share what I tell myself when the perfectionistic part takes over. “It’s better to do a half-assed job than no job at all.”

I’m not kidding. It’s true.

Childhood Abuse, Long COVID, and Adult Hypertension

There is a new issue of the GrassRoots newsletter coming out this week. Watch for it – it has information on new groups. If you don’t receive it, you can ask to subscribe at https://grassroots-ra-mc-collective.org/contact-us/.

I am getting a cat tomorrow! He is half Turkish Van, just like Baker. Like Baker, he could pass as purebred. His owner lives about 30 miles away and is happy to stay in touch after he moves in with me. His name is Spicy, but I think I will call him Spencer. 

Oh, and there is a Turkish Van Facebook group. It’s been around for ten years and has 4323 members. I guess Vans aren’t as rare as they are made out to be! https://www.facebook.com/groups/274535075956887/

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Every day, I receive three articles from the Harvard University Gazette. Most aren’t of much interest to me, but this one infuriated me.

“Study Finds Distress Before COVID-19 Infection Increases Risk of Long COVID by 45%.”
By Nicole Rura for the Harvard Chan School of Public Health Communications Department
https://news.harvard.edu/gazette/story/2022/09/depression-anxiety-may-escalate-chances-of-long-covid-says-study/ 
September 7, 2022

In this study, distress means psychological distress, including depression, anxiety, worry, perceived stress, and loneliness. How many of us RA/MC survivors have lived even one day of our lives without any of those conditions? I’d like to meet them and find out how they managed it!

I keep stumbling across articles correlating childhood abuse and adult illnesses of all sorts. They absolutely enrage me, and I vent by blogging about them. I’m angry that the abuse may end, but the physical and psychological effects are life-long. I’m angry that this isn’t widely known. If it were, there would be no need for more of these “ground-breaking” studies.

If you were a mess psychologically before you got COVID, you are far more likely to get long COVID. Physical health conditions such as asthma, diabetes, hypertension, cancer, obesity, high cholesterol, and current or past smoking are known risk factors for more severe COVID infections, hospitalizations, and deaths. This study showed that they barely contribute to the development of long COVID. 

Survivors have far more risk factors than other people – including autoimmune diseases. So we are more likely to catch COVID, more likely to be hospitalized, and more likely to die. And now they have found we are more likely to get long COVID. It’s not fair, and it’s not our fault.

Anyway, here are the highlights of the study.

From 4/1/2020 to 5/1/2020, 58,612 members of the ongoing Nurses’ Health Study II, Nurses’ Health Study 3, and the Growing Up Today Study were enrolled in a long COVID study and followed until 1/3/2021. During this time, 3,752 people (6%) reported testing positive for COVID, and 1403 (43.9%) reported post-COVID symptoms. Among these, 86.9% reported symptoms lasting two months or longer, and 55.8% reported at least occasional daily life impairment.

The most common symptoms were fatigue (56.0%), smell or taste problems (44.6%), shortness of breath (25.5%), confusion, disorientation, or brain fog (24.5%), and memory issues (21.8%).

All study members were first asked about their experience of psychological distress, including depression, anxiety, worry, perceived stress, and loneliness.

Psychological distress was associated with an increased risk of long COVID, independent of smoking, asthma, and other health behaviors or physical health conditions. Different kinds of distress were associated with a 32% to 46% increased risk of long COVID and a 15% to 51% greater risk of daily life impairment.

Psychological problems have been associated with a greater risk of more severe COVID (including hospitalization), which, in itself, is a risk factor for long COVID. Other studies show that mental health conditions are associated with greater severity and longer duration of flu and cold symptoms. Still other studies have suggested an association with chronic Lyme disease, chronic fatigue syndrome, and fibromyalgia, which all have symptoms similar to those of long COVID.

The full article, available online, also discusses possible mechanisms by which psychological factors could contribute to physical illnesses. 

“Associations of Depression, Anxiety, Worry, Perceived Stress, and Loneliness Prior to Infection With Risk of Post–COVID-19 Conditions.”
Wang, Siwen; Quan, Luwei; Chavarro, Jorge E.; Slopen, Natalie; Kubzansky, Laura D.; Koenen, Karestan C.; Kang, Jae Hee; Weisskopf, Marc; Branch-Elliman, Westyn; and Roberts, Andrea L.
JAMA Psychiatry. Published online September 7, 2022

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And then, on September 9, this came into my inbox:

“Sensitization of Hypertension: The Impact of Earlier Life Challenges: Excellence Award for Hypertension Research 2021.”
Xue, Baojian and Johnson Alan. 
https://synopsi.medpagetoday.com/article/162441/sensitization-of-hypertension-the-impact-of-earlier-life-challenges?xid=nl_mpt_Cardiology_update_2022-09-09&mh=02623b6c09bbfe381410b8080fd99509&utm_source=Sailthru&utm_medium=email&utm_campaign=Automated%20Specialty%20Update%20Cardiology%20BiWeekly%20FRIDAY%202022-09-09&utm_term=NL_Spec_Cardiology_Update_Active

Now, this really hits home. It’s validation that my crazy blood pressure behavior is a direct result of extreme childhood abuse. I’ll share the article with my doctors. Not that it will help them learn how to manage it, but at least it may be a little less of a mystery to them.

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My Trip Was Great!

I had a wonderful time and did all the things I wanted to.

Except I didn’t totally detox from the Internet. I used it to read maps, find places to eat, and play music. I felt refreshed, though, as I didn’t check my email once, nor did I look up any RA/MC-associated websites. I did not feel I was cheating and so came home calm, rejuvenated, and free of guilt.

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Next-To-Last Reminder – RA/MC Panel at the International Human Trafficking and Social Justice Conference

I will be part of a panel of RA/MC survivors of child sex trafficking. The title of the presentation is “The Interface between Sex Trafficking, Ritual Abuse, and Mind Control Programming.” It will be in two parts. Each part will consist of a recording of the panel discussion followed by live questions and answers. There will be a fifteen-minute break between the two sections. We have the whole afternoon on Thursday, September 22, 2022. Read more about the presentation plus descriptions of all the other presentations at https://app.traffickingconference.com/schedule Please come see us in (virtual) person! Survivors should choose the “Free Attendee Registration” option and remember to write for the registration code number. Register at https://www.traffickingconference.com/register

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Upcoming Holidays

October 10/9 Full Moon 10/10 Columbus Day 10/13 Backward Halloween 10/25 Partial solar eclipse visible in Europe, the Urals, Western Siberia, the Middle East, India, Western Asia, and northeast Africa. https://www.timeanddate.com/eclipse/solar/2022-october-25 10/31 Halloween/start of Celtic New Year/start of the dark half of the year November 11/1 All Saints’ Day 11/2 All Souls’ Day 11/4 Satanic Revels 11/7 – 8 Total lunar eclipse visible in North and East Europe, Asia, Australia, North America, much of South America, and Antarctica. https://www.timeanddate.com/eclipse/lunar/2022-november-8 11/ 8 Full Moon (Blood Moon) 11/11 (?) Veterans’ Day 11/24 Thanksgiving Day (United States) 11/27 First Sunday of Advent 11/30 St Andrew’s Day Dates Important to Nazi and Neo-Nazi groups  10/1 Lammas Early August through October: Various preparations are done in readiness for October, the month with the largest number of celebrations. 9/2  Autumnal equinox, “Fall Festival.” 10/16 Death of Rosenburg, a Nazi leader in World War II. (Many Nazi leaders were captured and scheduled for trial in late September and early October. Most of them killed themselves prior to trial.) 10/17 Hitler’s alternate half birthday (6 months from Easter, 2022) 10/19 Death of Hermann Goering, a Nazi leader in World War II. 10/20 Hitler’s half-birthday 10/31 – 11/1 Halloween 11/9 Beer Hall Putsch rebellion, the date Hitler declared the Nazi party the leaders of Germany. A few years later, in 1938, Krystalnacht, (the “Night of Broken Glass”) happened on this date.

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You can find more information on the following holidays at: Candlemas – https://ritualabuse.wordpress.com/2012/01/21/candlemas/ Valentine’s Day – https://ritualabuse.wordpress.com/2016/02/10/valentines-day/ Beltane – https://ritualabuse.wordpress.com/2013/04/28/beltane/ Mothers’ Day – https://ritualabuse.wordpress.com/2016/04/26/mothers-day/ Fathers’ Day – https://ritualabuse.wordpress.com/2020/06/20/ritual-abuse-and-fathers-day/ Summer Solstice (corrected text) – https://ritualabuse.wordpress.com/2013/06/15/well-this-is-embarrassing/ Lammas – https://ritualabuse.wordpress.com/category/lamas/ and https://ritualabuse.wordpress.com/2012/07/23/august-ritual-dates/ Feast of the Beast/Bride of Satan: Part 1 – https://ritualabuse.wordpress.com/2013/08/31/the-feast-of-the-beast/ Feast of the Beast/Bride of Satan: Part 2 – https://ritualabuse.wordpress.com/2017/03/20/feast-of-the-beast-part-ii/ Fall Equinox – https://ritualabuse.wordpress.com/2012/09/16/the-fall-equinox/ Halloween (personal) – https://ritualabuse.wordpress.com/2016/10/11/halloween/ Halloween (background) – https://ritualabuse.wordpress.com/2011/10/02/samhainhalloween/ Thanksgiving – https://ritualabuse.wordpress.com/2016/11/20/thanksgiving/ Yule/Winter Solstice – https://ritua