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?

A Diagnosis at Last – Dysautonomia

INCHING TOWARD CHRISTMAS

I imagine a lot of you are feeling anxious about the approach of Christmas. Now is the time to start planning how you can minimize the amount of stress, both from the pressure of internal issues and from the craziness (or loneliness) created by the here-and-now world. It’s reassuring to have a plan going into a holiday and not have to scramble at the last minute to think of things to protect and calm yourself.

What has helped in the past? What has been useful in other situations, and could it be adapted to the days around Christmas? If you write down your plan, you will have a place to jot down things as they occur to you. You might be surprised at the number of things you have thought up and at how creative some of them are. 

Remember that the winter solstice is on Wednesday, December 21, and Christmas Eve/Christmas Day is on Saturday, December 24/Sunday, December 25. That doesn’t give you much time to catch your breath between the two major holidays.

 

SPENCER’S NEWS

This cat is a little odd, even for a cat. He knows how to simultaneously do and not do something. That’s called passive-aggressive in humans and weird in cats. 

Here’s what’s been going on lately.

I was hoping that by the end of the year he might reset his circadian rhythm and start hanging out with me in the office. To prepare for him, I bought a large, sumptuous, but inexpensive cat tree so he could watch me from up high, where he is safe from being stepped on. I moved furniture to accommodate the cat tree and started working on the boxes of stuff on the floor. 

Spencer beat the deadline by a month! For the last four days, he has spent the day in my office, only an arm’s length from me. How sweet! Except he remains invisible. Perhaps he has body dysmorphia and can’t bear people looking at him, except when he is totally immersed in inhaling catnip or eating.

You see, between my chair and the window is my former kitchen table. Underneath the table are boxes. Spencer lurks right behind the box that is nearest to me. Now and then he stirs in his sleep and the tiny sound alerts me to his whereabouts. I moved the box a little to give him more room and to allow me to peek and see if he was there.

See what I mean by passive-aggressive? “You want me by your side? Fine, but you won’t know I am there. I get the last word.” Actually, it seems more like social phobia, doesn’t it?

 

GRASSROOTS’ NEWS

There are new free Yoga and art workshops. We are finally starting to work on updating the resource section. (No promises that it will be done by the new year.)

If you want a copy of the latest Newsletter, or you want to subscribe, sign up in the comments section or use the GrassRoots “contact us” form at https://grassroots-ra-mc-collective.org/contact-us/

 

A DIAGNOSIS AT LAST – DYSAUTONOMIA

For those of you who are new to my blog, or have resumed reading after a hiatus, welcome! I’ll start by giving you a little background.

For about 30 years, I have had labile high blood pressure. In the last year, I have experienced sudden large drops in BP (between 50 and 60 points.) My current cardiologist was cautious about treating the high readings for fear of precipitating a low and risking me passing out and falling. He referred me to a hypertension clinic for a consult. Recently, I started having days when my blood pressure was normal +/- 15 points.

The hypertensive clinic ruled out lots of possible causes and then ran out of steam. I found one more possible cause of low readings by Googling and was able to document it. The breakthrough, however, was thanks to a survivor friend who suffers from polyvagal shutdown. She suggested I check it out, as one of the symptoms is a large drop in blood pressure. 

(An aside – RA survivors are treasure-troves of information, no thanks to their horrendous childhoods.  Many of us read voraciously in search of answers about our abuse and its effects, and many others have amassed a wealth of information about one of the many illnesses that are directly or indirectly caused by growing up with constant trauma.)

Polyvagal shutdown is a term for the trauma reaction of the autonomic nervous system. When fighting or fleeing isn’t possible, a person or animal goes into freeze mode. Think of a possum, tricking a predator into thinking it is dead and not as safe to eat or as tasty as living prey. I figure if it happens when no danger is present, it’s a kind of body memory, a flashback. I Googled it, found a self-screening test, and discovered that my symptoms matched….the controls. Rule that out.

But the possibility of some neurological issue causing the extreme lability made me ask for a neurology consult. The after-visit summary of my first visit gave me the idea I might have Parkinson’s Disease. I followed up on that and have been accepted as a patient in a neurological practice that focuses on Parkinson’s. They are in the process of ruling out other diseases, as Parkinson’s has no unique measurable quality that differentiates it from diseases with similar symptoms. They have also given me a physical therapy appointment to work on balance, as I trip over my own feet and fall a lot.

On Thursday, I had the second part of the evaluation to see whether the blood pressure issues were caused by a faulty autonomic nervous system. Well, golly gee, guess what? I flunked all four of the tests. That indicates that my brain is no longer able to communicate with my body to keep my blood pressure within a normal range. Finally, finally, we have the answer.

Preparing for the tests was very unpleasant. I had to stop using pain meds for three days before the test. I am soooo grateful for CBD and gabapentin! Without them, it was a miserable three days. I worried about experiencing pain during the tests and also about the possibility of having flashbacks, as I would be strapped down for two hours.

Yes, there was pain, but no more than I had before the tests began. And zero flashbacks! What a pleasant surprise. The techs were nice, and they talked a lot. I could ask a question when I felt myself drifting away and restart a conversation, so I felt very much in control.

I like the matter-of-fact way that I disclose these days. So simple: 1. the possibility of flashbacks, 2. because of a shitty childhood, and 3. talk to me – your voice keeps me anchored in the present.

Okay, so what I know at this moment, before reading the after-visit summary, is that my autonomic nervous system can no longer control my blood pressure and cannot tell me to sweat in response to heat. I now like the winter temperature to be ten degrees warmer than I did two years ago, so I guess my ability to adapt to temperature is faulty. There are other symptoms I have that may or may not be caused by dysautonomia.

I know something else. Like much of the psychological and physical damage done by ritual abuse, dysautonomia cannot be fixed and cannot be healed. But there are things I can do to manage the symptoms and make them less bothersome. I have this attitude toward the sequelae of ritual abuse – I cannot heal the damage, but I can live with it in a different way. Everything I have learned over the years will come in handy, I am sure.

I realize I will be devoting more time to self-care. I will exercise more and pay more attention to my diet and the timing of my meals. One lovely thing is that I have been told I need a high-salt diet. After all these years of deprivation, I can indulge in potato chips without guilt! And I can start using salt when I cook – I wonder whether I will love or hate eating salted veggies and pasta. We shall see.

More self-care, hopefully, will result in feeling better. That’s a big plus. On the minus side, though, it will leave less time for all the things I love. Working with GrassRoots, mentoring, supporting new projects, rewriting material on the website, answering email, and hanging out with old and new friends. It’s going to take time to find a new equilibrium.

I’ll keep you all posted. 

 

 

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