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. 

 

 

A Huge Commitment to Myself

* Detailed instructions for making comments are in “News Items.”

* Remember that two anthologies are seeking submissions:

1. Jade Miller is working on an anthology about the difficulty of finding a therapist who can work with DID or other forms of dissociation. Write her at thetraumasurvivorstale@gmail.com

2. I am seeking submissions for an anthology of accounts of forced abortion, sacrifice, or forced adoption of babies in a cult setting. Contact me through the comments section, rahome@ra-info.org or RA Projects, PO Box 14276, 4304 18th St., San Francisco CA 94114.

* The Plural Positivity World Conference is on March 30, March 31, and April 1, 2019.

Here is the link to the conference Itself: http://www.youtube.com/pluralevents

There is a panel which includes me scheduled for 
Sunday, March 31, 2019 10 AM – 11:30 Eastern Daylight Time (1:00 – 2:30 Pacific Daylight Time) “Coming Out & Being Plural in a Singular World” – Panelists: The Crisses, Sarah& Clark, PrincessProto, Dr. Serseción, Jean Riseman

My interview is on Sunday, March 31 at 1:30 pm – 3:00 pm Eastern Daylight Time (4:30 pm – 6:00 pm Pacific Daylight Time) “(S)RA Myths Debunked – The benefits of connecting with other survivors.” – Jean Riseman

~~~~~~

I have done something very bold. I, who am quite risk-aversive, to say the least, have made a three-month, twelve-hours-a-week commitment to myself. I’m doing this in the hope that it will pay off in terms of improved health and that I will not sacrifice all the wonderful things I get from the Internet, nor my sleep, nor my social life, nor anything else that is really important to me. How I will do this is not yet evident.

Some of you probably know that I have osteoarthritis of the lower spine which limits my mobility and causes me a fair amount of pain most days. What I haven’t shared is that I am getting tingling and numbness in my hands, which strongly suggests that my neck is starting go, too. Since I plan to live another ten to fifteen years, this is serious.

I heard of a chiropractic clinic that uses very gentle techniques to correct imbalances due to injury and subsequent changes in posture: changes for the worse, of course. I had tried going to a chiropractor about twenty-five years ago and was terrified by the spinal adjustments. Not knowing when to expect them triggered flashbacks and I was also afraid that they would worsen my arthritis, not help it. I tried two different practitioners and each time quit after a few sessions. Going gave me no relief, only increased fear.

I had to overcome my initial impression of chiropractors in order to make this commitment. I was told about the clinic and its approach and I read up on it on the Net. It all seemed very sensible. Then I made a mini-commitment for an evaluation and found I was treated with respect and that the approach continued to make sense. The people were nice, too; they enjoyed their work and believed in it and were open and friendly.

I had an awful lot to overcome. There were negative core beliefs from childhood that argued strongly against my availing myself of this opportunity.

I think lots of people can relate to the feeling that I’m not worthy and I don’t deserve this. I can see that other people are deserving of care but I get uncomfortable when it’s pointed out that I do, too. After all, I wasn’t raised to see myself as just as good as others, just as entitled to having my physical and emotional needs met. I was raised to see myself as a tools of others with no intrinsic worth. If it pleased others to see a pretty little girl I was bought pretty clothes and if it pleased them see me filthy dirty and shaking with fear they made sure I was filthy and terrified.

Today I know better intellectually, but that early belief surfaces at times and gets in the way of taking care of myself. Even after years and years of challenging those teachings and coming to understand why I considered myself worthless and forgiving myself for having swallowed their lies, those core beliefs still sometimes show themselves.

There’s another barrier to accepting help for physical problems, especially those that cause pain. You see, the members of cult I was abused in were very pious. Pain was considered an offering to Satan, just as being moral and praying and helping others is a way of pleasing God in Christian churches. If you tried to get rid of pain, it was an insult to Satan, like shoplifting or having sex outside of marriage is considered a sin by Christians. I learned to bear pain stoically, without complaint, and even, at times, to welcome pain or seek it out. I’m going completely against my upbringing by trying to slow down the progression of the arthritis and diminish the amount of pain I live with.

Working hard and spending good money and lots of time every day for three months to avoid pain? The old tape says that Satan is not going to be pleased one little bit. I should be terrified. I should make sure I sabotage the treatment and get worse, not better. I should…I should….but I won’t. I’ve made the commitment and I am going to keep it. It will be a great adventure!

Upcoming Holidays

April
4/1 April Fool´s Day
4/8 Day of the Masters
4/14 Palm Sunday
4/19 Full moon
4/19 Good Friday
4/20 Holy Saturday
4/21 Easter Sunday
4/26 Grand Climax/De Meur
4/30 Walpurgisnacht/May Eve
May
5/1 Beltane
5/12 Mothers’ Day
5/18 Full moon
5/18 Armed Forces Day
5/27 Memorial Day
June
6/9 – 6/10 Pentecost
6/16 Father’s Day
6/17 Full moon
6/21 Summer solstice
6/23 Midsummer’s Eve

Dates Important to Nazi and Neo-Nazi groups
4/19 – 4/27 Passover/Pesach (Deliverance of the Jewish people from slavery in Egypt)
4/20 Hitler´s actual birthday
4/21 Hitler’s alternative birthday (Note: Hitler was born on Easter, so Nazis celebrate his actual birthday and half-birthday on 4/20 and his actual birthday and half-birthday on Easter of the current year.)
4/30 Anniversary of Hitler’s death
5/1 – 5/2 Yom HaShoah (Holocaust Memorial Day)
5/7 – 5/8 Yom HaZikaron (Memorial Day, Day of Remembrance)
5/8 – 5/9 Yom HaAtzma´ut (Israeli Independence Day)
5/8 V-E Day (Victory in Europe, WW2)
(NOTE: Not all groups meet on Jewish holidays. Some groups also mark

Self-Care in December

Upcoming Holidays

December
12/21 St. Thomas’ Day/Fire Festival
12/21 Yule/Winter Solstice (Search for Yule on this blog. The information there also applies to the Pagan background of Christmas.)
12/24  Christmas Eve/Satanic and demon revels/Da Meur/Grand High Climax
12/15  Christmas Day (Search for Christmas on this blog. These posts are personal rather than on the historical background of Christmas.)
12/31 New Year’s Eve

January
1/1 New Year’s Day
1/1 Full Moon
1/7 St Winebald’s Day
1/13 Satanic New Year
1/17 Feast of Fools/Old Twelfth Night/Satanic and demon revels 
1/31 Full Moon

February
2/2 Candlemas/Imbolc
2/13 Mardi Gras
2/14 Valentine’s Day
2/14 Ash Wednesday (beginning of Lent)

Dates important to Neo-Nazi groups
1/12 Birth of both Rosenberg and Goering, Nazi leaders in WWII
1/30 Hitler named Chancellor of Germany

Self-Care in December

Glancing at the ritual dates above, it’s clear that the ten days between the solstice and New Year’s are going to be rough. I usually remind people that not all cults observe all the holidays listed, but for these four days (12/21, 12/24, 12/25, and 12/31), all Satanic cults surely celebrate all of them. Satanic and demon revels, Da Meur, and the Grand High Climax are not part of the Christmas Eve rituals for most cults, but that is the only consolation.

I hope all of you can stay safe and keep your courage up. Try to remember that you have survived many other Decembers and that you have more experience in coping with hard times than you did last year.

This is a good time to plan ahead. If you start the project today and then review it every day, adding things and making changes as you think of them, you should have a pretty solid plan by the time the shit hits the fan.

Do you by any chance have a copy of a survival plan you have made for other holidays? If so, it would be a great starting point. You know which things were helpful and which missed the mark. You can go through it point by point, copying some, changing some, and omitting some. If you don’t have an old one, make sure to keep a copy of this plan for future use.

Here are some issues I suggest you consider.

1. External safety. Do dangerous people know how to reach you? Is there some way to minimize the chances they could access you? They probably will use words or objects to trigger you into attending rituals. You are adult now, even if not all of you believes this, and they can no longer just pick you up and take you away. That’s called kidnapping and they would far rather rely on triggers than do something that could be dangerous for them.

If you are worried that somebody may break in, buy an inexpensive alarm that you can hook over the door. Or arrangement to be with somebody safe, either at their place or yours.

2. Internal safety. Even if nobody triggers you, the time of year in itself is a trigger. Chances are parts of you will yearn to be with your family. Perhaps, just perhaps, there will be a perfect Norman Rockwell-type Christmas this year, with presents and good food and good feelings all around. It’s hard to talk yourself out of giving them just one more chance to respect you and love you and be proud of you.

That’s not too hard to understand. What may seem strange is that you are attached to your abusers, attached to the pain, disappointment and degradation. As a child you thought that if you could please them they would not hurt you; they were punishing you because you were bad and, if you were good, they would reward you. So you kept trying. It gave you a sense of control, no matter how small or how delusional.

Also, they were there and they were the source of attention and the basics of life, like food and water. A child is born a need for others as strong as the very life force, and if all you have is people that abuse you, those are the people you will become attached to.

3. Both these issues point to the need to talk to your inner parts, especially to the little ones. They need to know that you will protect them the very best you can and that they do not have to obey the cult any longer. Their desire to return must be acknowledged as natural and understandable and then soothed. They are very brave to try something different and to trust you.

4. Self-harm. What has helped in the past? Make a list of the people you can call if you need to. Hotlines. Your therapist if you have one. Friends you have been able to count on in the past. Also list any groups you have found helpful, like Twelve-Step groups or on-line support groups, or message boards.

If, despite all the precautions you have taken, you are afraid you might hurt yourself badly, please, please, call 911. You need to live for yourself, for me, for every RA survivor. Here is a poem written and illustrated for ritual abuse survivors by a ritual abuse survivor. I can’t tell you how many times I have read it. http://dadig123.ca/reasons_not_to_kill_yourself.html

5. Self-soothing. You might find that people or activities that can distract you are helpful, too, especially for your littles. Taking a break and having fun can be just as healing as a long serious conversation or having the chance to cry without being judged.

Make a list of things you can do alone that will please your littles (and don’t forget your older parts!) and get together any materials you might want. Coloring books, crayons, magic markers, colored paper, your journal. A musical instrument if you know how to play one, a playlist of favorite music. Videos to dance to – whatever you think might appeal to you and would be more fun than rushing around trying to find things at the very last minute.

6. Prepare a special place for yourself. You could stock it with tea and snacks and stuffies. Cozy blankets, soft pillows, your favorite pj’s would all be welcome. You could decorate it ahead of time with drawings, real or paper flowers, encouraging affirmations. Let your imagination go wild!

These are just suggestions. If you have found something to be especially helpful, it would be a great gift to share with others in the comment sections.

So my wish to all is to stay safe, keep your misery to a minimum, and remember that December is almost over.