Revelations Part 4 - PTSD

In this series I have focused on specific epiphanies I have had since I was declared legally disabled.

Some of these are:
I have not been forsaken.

You have not been forsaken. You are believed. You are supported. The Goddess and God are with you.
You are not misunderstood. You haven’t given enough education to be understood.
Teach and tolerance follows…and if not tolerance at least understanding and educated when decisions need to be made.
Dysautonomia is a complicated disorder whose physical impact has daily consequences.
My fourth epiphany is this:
Mind, body and spirit are one.
Most persons who follow an earth based spiritual path will tell you that this is true. I have often personally felt that this leads to some unintentional judgment on the part of some against those of us who are chronically ill. If mind, body and spirit are one, then you could THINK yourself well. I have written on this topic at various times during my disability and the simplest way to explain my current belief is this: if, in nature, disease is nature then disease within the human population is natural too.
What isn’t natural is the way that many of us end up ill. The interplay of pollutants, hormones and preservatives in our foods and even the chemicals that are used to process our foods are just beginning to be studied and understood. We know that these affects are debilitating in some. Tony suffers from migraines caused by MSG intolerance. The life changes we have to go through to accommodate this disorder is pretty extensive.

One of the other ways many of us end up ill is through prolonged psychological, sexual, physical and mental abuse. It is a medical fact that those who grow up in environments where stress is not the overwhelming energy around them are far healthy than those who do not. Further, I think that often those who were exposed to psychological, sexual, physical and/or mental abuse are lead to believe that with a strong will the long term affects of such exposure can be overcome.

It is not necessarily common knowledge that I was raised by a pedophile and rapists. The abuse took me to a place where I had a three day fugue, that is a time period in my life that I cannot account for where I was, where I had been, what had happened.

I came out of this fugue state in a batter women’s shelter. I had obviously been beaten and roughly treated. I was suffering from Pelvic Inflammatory Disease and had never willingly taken a sexual partner.  Slowly I remembered my name and the shelter relocated me out of the county and off the books because my biological father at the time was a deputy sheriff in the town that we lived in. Given my biological father’s position of authority and my outward state of terror, I wasn’t even offered a chance to press charges. Of course, remembering the abuse is an important factor to prosecution.

My childhood is one of crystal clear memories followed by periods of complete absence of memory. I seek counseling on a regular basis to combat PTSD attacks. These are periods where I relieve my abuse as if it is currently occurring. I lose time and become unclear of where I am or even who I am with. With counseling and medication, these episodes have lessened significantly. Stress is a major factor in their frequency and severity.

I used to believe that I could separate these events in my life. Box up my PTSD and my years of sexual, physical, mental and emotional abuse and separate them from what was physically happening to my body. However, it is of interest to note that nearly 80% of those who have Dysautonomia also suffer from PTSD and Anxiety. The theory is that years of living in a flight or fight response causes permanent physical damage to the body, especially to those who may have a genetic predisposition to problems, like neurocardiogenic syncope which I was born with.

My life has been one lived surrounded by an immediate biological family who treated me like an outcast. I often fought back against my physical abuse and was not known to holding my tongue even if that would have been to my benefit. My biological mother was and is the classic enabler. When my father tried to kill me with a 9mm automatic and missed her comment when confronted was, “If he really wanted to kill you, you’d be dead. So he was just playing around.”

This statement really sums up the tone I grew up with. When I married, my first husband met my handsome biological father and seemingly well put together mother and decided I was a liar. It is no hard stretch to understand that the marriage would fail. Not that I particularly blame my ex. My biological family could be charming and I was a mess. They had been calling me “mentally unstable” for years as an explanation for any number of cues that would have told authorities or other people I was being abused.

When Tony met my biological father, he told Tony that I was insane and if he was smart he would encourage me to enter into a treatment facility and give up custody of Sam. Tony stated firmly that his visits with my counselors and experts and the direct problems we had in our sexual life was all the confirmation he needed that my biological father was indeed a rapist and a pedophile.

Of course, I am not the only survivor. I have been approached by two girls who I went to elementary school and high school with. Both accused me of not protecting them from the rapes they received at my father’s hand or penis, as the case may be. There isn’t a whole lot an adult child of incest can say to another survivor. I was raised in a house of abuse and taught that abuse was normal. The fact that it never occurred to me to protect my friends was natural because the abuse was normal. Explaining the psychological damage these types of relationships have on people is difficult and an extremely foreign concept for most people.

I have always maintained that my life growing up was for a purpose. I don’t believe that I chose to come to this lifetime to be abused; however that doesn’t preclude me from trying to learn what I can from having been abused and surviving.

One thing that a life time of abuse of this magnitude does is destroy the fundamental guideposts that people use to set up and maintain relationships. There is a definite cycle where the survivor tends to attract abuse in all forms to themselves and then goes into what I call, “Whatever it takes mode.”
After realizing that you can identify abusers and chose to not have relationships with them, you begin to seek other types of relationships. However, your ability to set boundaries, understand other people’s boundaries and find a way to have a productive and mutually uplifting relationship is destroyed.

Oh, you will read books and go through programs and still the practical application can really be beyond your ability to execute.

I became a pleaser, a peace keeper. Somewhere deep in me is a little girl who thinks that if she is perfect: says the right things, does the right things then people will love her. I look at conflict as an opportunity for resolution and this usually means that I am willing to give up just about anything to bring peace and love around me.

Well before my official 2009 disability date, I was on a downward slide mentally, physically and emotionally. I was not well. I wanted to be adored and loved for who I was and felt strongly that I was loved and adored for what I could provide.

When I no longer felt I could provide to a larger group of people, I pulled back and focused on my family. A few friends weathered the storms with me and supported me as they could and over time I realized that as they did what they could, we were all working off of relationship constructs that didn’t really work before my catastrophic illness and certainly weren’t going to work under pressure.
For a little girl in me who understood that value is what you can do – have sex without making a big fuss – weather a huge beating and then wear the proper clothes to hide it so no one would know – take a beating for a sibling because they were angry and mad at the situation and I was mouthy. Being in adult relationships hasn’t lost a lot of these highly destructive and difficult to deal with constructs. I find myself in relationships trying to figure out what to DO to make them work. The concept that sometimes in relationships there is nothing to DO is really difficult for me to accept or even understand.

I keep trying. I am the peacemaker, the fixer. People are hurt, obviously I did the harm…maybe or maybe not that is truth; however, it is certainly my perspective. Others emotions and reactions to things scare me. People who are angry with me hit me. No, not anymore; however, when you reaction is to expect a strike, you expect that strike whether it is verbal or physical is irrelevant and in some twisted way you come to believe you deserve it. So I find myself in conflict with others fighting these ingrained reactions and looking for the emotional cues I have always understood – anger, resentment, annoyance.

When I got sick, for years during my illness, I believed that some of my relationships were one way. Later I would discover that those relationships were hiding aspects that were ugly and angry. That anger eventually erupted. As an adult I can rationalize what is going on with others and as a survivor I have all these complicated thought process that I know aren’t rational.

1. If someone is mad at me, do they love me? Did they ever?
2. If they are venting and I don’t feel like I am being heard, then should I just agree with them to make the situation go away?
3. If I am having anxiety is it because someone is mad at me and I don’t know it?
4. My entire life I thought abuse was normal and it wasn’t. If I believed that a relationship was one way for years and it wasn’t what do I do with that? What is my culpability? What do I do to fix it? I couldn’t fix my biological family…am I back in that situation.

My therapist and I have been asking, “What does Dia want out of relationships?”

 

It is an interesting question to ask oneself and the answer I know has changed significantly over time. I used to think that if I was adored by masses of people then somehow that girl in me would finally feel secure, safe. I no longer believe this to be true. Adoration is not the same as being known.

 

I have always maintained that I wanted my son to KNOW me. I wanted him to know my story and to know my triumphs and I wanted to KNOW him.

 

Knowledge, true knowledge, as always has been power for me. Most adult survivors of incest spend an average of four visits to mental hospitals. I have only been hospitalized once. When I left the system of the battered women’s shelter, my sponsor told me I might actually make it. When questioned she told me that most women eventually die at the hands of their abusers or spend their lives mentally and emotionally frozen, unable to do much of anything beyond subsisting. She felt I would actually thrive.

 

And I have in many ways. I have a son and a husband and we are not living in an abusive relationship. I have worked hard to distance myself from my biological family. I “divorced them” years ago and feel freedom and safety for it. I sought out and learned what motherly love really looked like and though that love is gone from this physical plane, it burns brightly as I deal with my boy. I have kept some semblance of my faith. I don’t attend large rituals anymore and that is ok. My quiet daily rituals are plenty for me.

 

Given all this, I still react to most all relational situations with the default all abusers have been trained to have. When someone is angry, I immediately internalize that anger and move into peacekeeper or fix it mode. The idea of giving someone space to feel on their own and process on their own is completely foreign to me and one I am working diligently on. I have had relationships where for years I was manipulated simply by my own desire to try to keep peace or fix situations that I alone could not fix. It has taken work on relationships one at a time to break these situations and keep them from continuing in destructive patterns.

 

The point of all this is if you deal with me and find my responses odd, they probably are. I am not necessarily just reacting to you and your relationship. I am reacting to years of abuse while I fight the conditioning that is a residual on my soul. When I ask questions, I am not being obtuse or mean or even sarcastic. I really need an answer. Asking questions is how I flesh out what is going on in a way that I can understand it.

 

I have had some great teachers and read some great books on communication. I try to utilize those tools to help me deal and I fail miserably often.

 

However, I believe what marks any survivor is their willingness to get up and go back for more. They try. They ask themselves questions and seek out their own answers and they relentlessly cling to relationships while trying to find a way for them to be healthy.

 

I plan on continuing to do this. I know it annoys some friends and I hope given this perspective understanding can continue to be shared.

Revelations: Part 3 - Eduction Continued

I have not been forsaken.
You have not been forsaken. You are believed. You are supported. The Goddess and God are with you.

In the first part of this series, I was struck by how angry, bitter and miserable I had become feeling as I have about being forsaken. The revelation that I wasn’t opened my eyes to the different ways I had isolated myself with my anger and bitterness and even gave insight into how dysfunction in relationships prior to major life changes, whether it is death, illness (temporary or permanent), divorce or any other number of major life changes dictates the result of the relationship after the change occurs.

You are not misunderstood. You haven’t given enough education to be understood.
Teach and tolerance follows…and if not tolerance at least understanding and educated when decisions need to be made.

Part 2 focused on discussing the mechanism of Dysautonomia, one malfunction that I suffer because of Dysautonomia (B12 deficiency) and how that impacts my interactions with others. I also started giving out the code words I use my family and close friends to try to help them and myself better deal with the challenges dysautonomia presents as I try to maintain and rebuild relationships around me.

Dysautonomia is a complicated disorder whose physical impact has daily consequences.

Part 3 will continue to discuss the different types of symptoms that persons suffering from Dysautonomia can suffer from and I will highlight the symptoms that I am most plagued with, giving examples of how these manifest in my daily living. The information is from the Dysautonomia Information Network.

Dysautonomia Information Network

Postural Orthostatic Tachycardia is a syndrome. As such, there is a collection of symptoms that distinguish it. The symptoms are widespread because the autonomic nervous system plays an extensive role in regulating functions throughout the body. Many of these symptoms, such as low blood pressure,* may present only after prolonged standing. Symptoms will vary from person to person. The following is a list of symptoms reported by patients. When possible, we have included the percentage of patients that research reports have experienced a given symptom

.

Symptoms presumed to be related to cerebral hypoperfusion:**
Lightheadedness  77.6 % (Grubb, 2000)
Fainting or near fainting 60.5% of patients report near fainting (Grubb, 2000)
Generalized weakness 50% (Low et al.)

Specific to my case, these are the top three symptoms that I suffer from. Sometimes, I simply have a feeling of my head being disconnected from my body, like I have taken some kind of cold medication. This lightheadedness is intensified when I have ear, nose, throat or bronchial infections. I tease that I probably couldn’t pass a road side sobriety test sober any more. It takes concentration and effort to not allow this type of lightheadedness take over.

There are really three types of fainting or near fainting that happens to me. The first is where I lose my vision. It feels like tunnel walls collapse from the outside in leaving me temporarily blind. This blindness can last for up to two minutes. My hearing is not affected by these episodes. I can hear Tony talking to me and cannot respond. Typically, I see the tunnel collapsing and then I immediately drop to the lowest possible position available. These are what I call slow moving episodes, meaning I have time to anticipate the safest place to fall and time to react. Tony, Sam or Alice can all intervene in these episodes because the develop slowly and my body language warns them of the impending issue.
The second type of fainting is fast and vicious. This type most often happens upon standing. I not only lose sight, I lose hearing as well. My body literally collapses. In these incidences when I am alone. I will wake to Alice snuffling my ear and licking my neck’s pulse points. One particularly long episode recently and I slowly woke to realize I was getting a doggy bath on any part of my body that was exposed. I am assuming that I was out longer than was usual. If Tony is around, I will wake to him quietly talking to me just to establish that I have returned to consciousness. These types of incidences cause extreme fatigue directly after the episode. My body feels heavy and my ability to respond is inhibited. These episodes will cause flue like symptoms afterwards. I will feel feverish and achy, sometimes from the bruising that will occur when a body hits the floor. I will spend several minutes, five to ten, on the floor allowing my heart rate to slow and my mind to clear from the fainting fog. These episodes are dangerous because of the possibility of physical injury. This year I suffered a dislocated shoulder from a fainting episode.
The third type of episode comes from coughing or laughing. Recently I was watching TV with the boys and started laughing hysterically; I then woke to find myself draped across Tony’s lap with him urgently talking me back to consciousness while Alice snuffled my ear. These episodes are more likely to happen if my body is already under physical stress, which is fighting an infection. These seem to be less predictable and are part of the reason why I prefer NOT to drive if possible.

Symptoms presumed to be related to autonomic overactivity include the following:**
Palpitations 75% (Grubb, 2000)
Tremulousness 37.5% (Low, Opffer-Gehrking, Textor, Benarroch, Shen, Schondorf, Suarez & Rummans, 1995)
Shortness of breath 27.6 % (Grubb, 2000)
Chest discomfort and/or pain 24.3 % (Grubb, 2000)

Because I have neurocardiogenic syncope, by definition I have palpitations or tachycardia episodes. Bear in mind my typical resting rate is between 95 BPM to 110 BPM. When I go tachycardic, my BPM can rise to 140 to 160 for short periods of time. This happens most often during sleep cycles. I also suffer from tremors of the hand. These correlate directly to the amount of fatigue I am experiencing and whether or not I have another physical stressor such as an infection. Sometimes this occurs while waking and is noticeable in the way my entire upper body beats with my heart, as if I am consciously rocking back and forth when in actuality my heart is pumping so fast it is moving my body.

Sudomotor symptoms include the following:**
Loss of sweating 5.3 % (Low et al.)
Excessive sweating 9.2 % (Robertson, 2000)
Loss of sweating and excessive sweating are more common in patients with elevated norepinephrine levels (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007).

I sweat a LOT. I now utilize prescription strength antiperspirants. Heat is a deadly thing for me. I tend to overheat quickly and am absolutely miserable in the spring and summer here in the South. This ties into my body’s inability to regulate my body temperature on a regular basis. I will suffer from profuse night sweats about once a month. Fevers are a weekly occurrence which means I suffer the stiffness and achiness that accompanies all fevers. The fevers are more frequent when my body is fighting infection; however, the night sweats and profuse sweating really follow no normal pattern. When I deliberately exercise I am not likely to sweat much at all, again a sign that my body cannot properly regulate my body’s core temperature.

Symptoms that may reflect dysautonomia:**
Delayed gastric emptying 23.7% of patients report gastrointestinal complaints, including bloating (Grubb et al., 1997)
Bloating after meals (Grubb et al., 1997)
Nausea 38.8% (Robertson, 2000)
Vomiting 8.6% (Thieben et al., 2007)
Abdominal pain  15.1% (Thieben et al., 2007)
Diarrhea 17.8% (Jacob & Biaggioni, 1999) (sometimes with alternating constipation)
Constipation 15.1% (Thieben et al., 2007)
Bladder dysfunction 9.2% (Thieben et al., 2007) (this may include Polyuria (Jacob & Biaggioni, 1999) (excessive urination)
Pupillary dysfunction 3.3% (Thieben et al., 2007) Pupillary dysfunction may or may not be responsible for some other reported symptoms, such as: Blurred Vision (Grubb, 2000) and Tunnel vision (Low et al.).

There are a lot of varying opinions about whether gastric issues can be directly related to dysautonomia. In my experience, Irritable Bowel Syndrome (IBS), nausea, vomiting, abdominal pain without any clear reason and constipation are all things I experience on a daily basis. My doctors have found that taking antacids have helped the nausea and vomiting. I can also testify that copious amounts of water have drastically helped the IBS and constipation. However, the abdominal pain comes and goes and in the past year has landed me in the hospital in so much pain I had to be sedated. Test concluded there was no cause that could be identified for the pain other than general swelling. Additionally, my entire condition took a significant turn for the worse when my gallbladder and appendix were removed. Both of which have their own long term impacts on the body.

Generalized Complaint symptoms:**
Fatigue 48% (Grubb, 2000) (which can be disabling) 
Sleep disorders 31.6% (Low et al.) (can cause unrefreshing sleep and an increased need for sleep)
Headache/migraine 27.6% (Grubb, 2000)
Myofascial pain 15.8% (Thieben et al., 2007) (characterized by regional muscle pain accompanied by trigger points)
Neuropathic pain 3% (Thieben et al., 2007)

I suffer from crippling fatigue. Abbye and Sarah are some of the few people outside of my immediate family that have seen the fatigue come and set in. In Abbye’s case, she and Will had come for lunch and a chat and literally watched the energy drain out of my system, by the time they took their leave, I was so fatigued that seeing them out was beyond my ability. Sarah has seen this process at her own home when I go for visits. Today was a good example of how quickly the fatigue can set in. One minute I was fine, the next I was passed out on the couch simply unable to do anything other than try to nap and recuperate enough strength to eat dinner and get ready for bed.
Unfortunately, these bouts of fatigue seriously mess with my sleep wake schedule. I try not to nap if I can help it OR try to wake very early (5 or 6 AM) and then nap from 7 or 8 AM to 1 to 2 PM, usually this gives my body time to have the fatigue return enough for me to need sleep at bed time. Tonight, I ended up crashing around 4:30 PM and sleeping until 7:30 PM which seriously inhibits my ability to sleep at normal times.

Further, as previously mentioned, when I do sleep I can have one to two tachycardic episodes while I sleep. Where for not reason my heart rate will run as fast as 160 BPM for two to five minutes at a time, this sleep exercise interferes with my body’s ability to rest and recuperate which further contributes to my crippling fatigue.

Migraines can come and go; however it is the myofascial and neuropathic pain that I have the most of. There days when it simply feels like I volunteered to be run over and then backed up by a bus. These pains are all over and accompanied with a the pleasant side affect of small bruises that persist.

Other symptoms reported in research that are not categorized above include:
Dizziness (Grubb, 2000)
Tachycardia (Grubb, 2000)
Exercise intolerance (Grubb, 2000)

I am hoping that I will be able to tolerate some exercise in the future as things calm down as exercise is one of the best ways to minimize these issues. As it stands, exercise just isn’t something I can do alone.

Clamminess (Grubb, 2000)
Anxiety (Grubb, 2000)
Flushing (Grubb, 2000)

I suffer from Anxiety and Post Traumatic Stress Disorder (PTSD) from my abusive childhood. Given that, however, studies have shown that for dysautonomics that experience fainting and near fainting episodes, they suffer from nearly twenty-four hours of increase anxiety. The belief is that the fainting ignites the flight or fight response and since there is no resolution for the initiation of the responds, it takes the body much longer to come off that type of physiological response. For me this is like taking my normal level of anxiety and then amplifying it by 100%. This has the added affect of tripping off my PTSD which further elevates my PTSD and creates a pretty vicious cycle.

 

Postprandial hypotension (Grubb, 2000) (low blood pressure after meals) 
Blood pooling in limbs (Grubb, 2000) (can make legs feel heavy and appear mottled and purple in color) 
Intolerance to heat (Grubb & Karas, 1999)

I have already discussed this particular issue.

Feeling cold all over (Grubb & Karas, 1999)
Low blood pressure upon standing (Grubb, Kosinski, Boehm & Kip, 1997) (Some physicians feel orthostatic hypotension is a separate entity from POTS)

The same for clinically low blood pressure, for it is my body’s inability to adjust my already clinically low blood pressure properly that causes near fainting and fainting spells.

Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)

This has been extensively discussed in Revelations: Part 2 of ?

Narrowing of upright pulse pressure (Jacob & Biaggioni, 1999)
Cold hands (Low et al.) (and often feet & nose)
Hypovolemia (Low et al.) (low blood volume)
Chills (Low et al.)
High blood pressure (Low et al.)
Hyperventilation (Low et al.)
Numbness or tingling sensations (Low et al.)

I suffer from this off and on about three to four times per month. Other than annoying, it gives me some indication how well, or not, my blood pressure system is functioning.

Reduced pulse pressure upon standing (Low et al.)
Low back pain (Mathias, 2000)

I suffer from this constantly. It is similare to having a wrenched low back without the possibility for relief.

Aching neck and shoulders (Mathias, 2000)
Noise sensitivity (Stewart, 2001)
Light Sensitivity (Stewart, 2001)
Disequalibrium (Sandroni, Opfer-Gehrking, McPhee & Low, 1999)

Noise and light sensitivity often accompany the migraine episodes although there are days when I simply retreat to my room because even the television is too much noise for me to tolerate.

The above are symptoms reported by POTS researchers.
Other symptoms sometimes reported by POTS patients include:
Arrhythmias (irregular heart beats)
Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)

This is a major problem for me. My body is continually finding new and inventive ways to be allergic to medications that I have successfully taken in the past and medications that I have been ordered to take to combat some specific issues my dysautonomia has created.

Easily over-stimulated 
Feeling full quickly
Feeling "wired"
Food allergies/sensitivities (some foods seem to make symptoms worse)

This is a new avenue of exploration for me. I have become convinced that some foods do cause horrible problems with my dysautonomia and isolating exactly the ingredient that is causing problems is more than a bit challenging. Some experts recommend an organic only diet which I would love to convert to IF I could afford it.

Hyperreflexia
Irregular menstrual cycles
Loss of appetite
Loss of sex drive
Muscle aches and/or joint pains
Swollen nodules/lymph nodes

My fingers and feet sweet and my lymph nodes and nodules are a constant state of swollen. These simply indicate the irritation my body feels over combating this disorder.

Polydipsia (excessive thirst)
Weight loss or gain

I continue to drink copious amounts of water and gain weight. The hope is that once my overall health is stabilized  changes can be made to my diet and my exercise regime in the hopes that taking some excess weight off will assist in limiting current symptoms.

           Feeling detached from surroundings

When I came across this particular issue, I was really relieved. I had become to think there was something seriously wrong with me. However, knowing this is part of the disorder I suffer from is helpful. Additionally, when you add into this the PTSD trauma and Anxiety, I find that this type of detachment is even more pronounced. I will discuss  this further in future blogs.

            Restless leg syndrome

POTS symptoms can vary from day to day. They tend to multiply and become exaggerated upon upright posture. Blood flow and blood pressure regulation are also abnormal while supine or sitting, but these abnormalities may not be as apparent and may require orthostatic stress to become evident (Stewart & Erickson, 2002). Some patients do report symptoms occurring while sitting or lying down. Heat, exercise and eating can exacerbate symptoms. Women sometimes report an increase in symptoms around menstruation.

If you are suffering from some of the above symptoms, you need to seek professional help. Please do not attempt self-diagnosis.

*Some of the above symptoms are specifically related to orthostatic hypotension, traditionally defined as an excessive fall in BP (typically > 20/10 mm Hg) on assuming the upright posture. Not all patients will experience a drop in blood pressure upon standing. Some physicians define orthostatic hypotension as a separate entity from POTS.

** The hypothesized origin of symptoms and their frequency came from the "Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience" by Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007.
I will have one more Revelation entry that focuses on the PTSD and Anxiety component of my issues.

References
1. Grubb, B. P. (2000, July). Orthostatic intolerance. National Dysautonomia    
          Research Foundation Patient Conference. Minneapolis, Minnesota.

2. Grubb, B. P., & Karas, B. (1999) Clinical disorders of the autonomic nervous 
 system associated with orthostatic intolerance. Pacing and Clinical 
 Electrophysiology, 22, 798-810. 
 Full text: www.ndrf.org/PDF%20Files/disorders.PDF 

 3. Grubb, B. P., Kosinski, D.J., Boehm, K., & Kip, K. (1997). The postural 
 orthostatic tachycardia syndrome: a neurocardiogenic variant identified 
 during head-up tilttable testing. Pacing and Clinical Electrophysiology, 
 20, (9, Pt. 1), 2205-12. PMID: 9309745 [PubMed - indexed for MEDLINE]

 4. Jacob, G., & Biaggioni I. (1999). Idiopathic orthostatic intolerance and postural 
 tachycardia syndromes. The American Journal of the Medical Sciences, 
 317, 88-101. PMID: 10037112 [PubMed - indexed for MEDLINE]

 5. Low, P. A., Oper-Gehrking, T. L., Textor, S. C., Benarroch, E. E., Shen, W.   
 K., Schondorf, R., Suarez, G. A., & Rummans, T. A. (1995). Postural 
 tachycardia syndrome (POTS). Neurology, 45, (4, Supplement 5), S19-25.
 PMID: 7746369 [PubMed - indexed for MEDLINE]

 6. Mathias, C. J. (2000, July). Other autonomic disorders. National Dysautonomia 
 Research Foundation Patient conference. Minneapolis, Minnesota.

 7. Robertson, D. (2000, July). General description of the autonomic nervous system  
 and orthostatic intolerance overview. National Dysautonomia Research  
 Foundation Patient Conference. Minneapolis, Minnesota.

 8. Sandroni, P., Opfer-Gehrking, T. L., McPhee, B. R., & Low, P. A. (1999). 
 Postural tachycardia syndrome: clinical features and follow-up study. Mayo 
 Clinic Proceedings, 74, (11), 1106-1110. 
 PMID: 10560597 [PubMed - indexed for MEDLINE]

 9. Stewart, J. M., (2001, Spring/Summer). About being young and dizzy: overview  
 of dysautonomia. National Dysautonomia Research Foundation Youth  
 Network Fainting Robins Newsletter, "The Young and the Dizzy", 1, 1-2.

 10. Stewart, J. M., & Erickson, L.C., (2002). Orthostatic intolerance: an overview. 
 In Alejos, J. C., Konop, R., Chin, A. J., Herzberg, G., Neish, S. (Eds.). 
 emedicine Journal, 3, (1). http://www.emedicine.com/ped/topic2860.htm 

11. Thieben, M. J., Sandroni, P., Sletten, D. N., Benrud-Larson, L. M., 
  Fealey, R. D., Vernino, S., Lennon, V. A., Shen, W. K.,  & 
  Low, P. A., (2007).  Postural orthostatic tachycardia syndrome: the 
  Mayo Clinic experience. Mayo Clin. Proc. 82, (3), 308-313.
  Full Text  

Revelations Part 2 of ? Education

I have not been forsaken.You have not been forsaken. You are believed. You are supported. The Goddess and God are with you.
In the first part of this series, I was struck by how angry, bitter and miserable I had become feeling as I have about being forsaken. The revelation that I wasn’t opened my eyes to the different ways I had isolated myself with my anger and bitterness and even gave insight into how dysfunction in relationships prior to major life changes, whether it is death, illness (temporary or permanent), divorce or any other number of major life changes dictates the result of the relationship after the change occurs.
Being declared “officially disabled” by the Social Security administration also revealed for me another issue that was clear. Judge Dole asked questions, lots of questions.

These questions weren’t, “What’s going on?”
“What’s wrong with you?”
“Why can’t you work?”
These questions were based on an extensive brief that Joseph Seagraves, Attorney at Law, had put together with my help. It was based on research I had done into Dysautonomia and the medically proven affects it has on persons who suffer from it. As Judge Dole walked me through this illness, it occurred to me that those who know me don’t have this brief. They don’t understand and haven’t been given enough information to know what about me exactly has changed. My brief included research papers that were fifty pages long explaining what Dysautonomia is, how it affects the body and included the specific ways that it affects MY body, MY mind.

Further Judge Dole asked me questions about what my day was like. What it felt like when I had an episode and how I dealt with staving off episodes. His keen insight helped me understand how much those who love and care for me don’t understand.  My blubbering about people not understanding rest with my inability to give reference and that inability stems from my desire to not really admit I am changed. I am not who I was and may never be again. My rants about acceptance of who people are in their disability is all well and good. It is also useless if understanding isn’t given and who is going to give that if it isn’t me?

You are not misunderstood. You haven’t given enough education to be understood.
Teach and tolerance follows…and if not tolerance at least understanding and educated when decisions need to be made.
DysautonomiaThere are two types of nervous systems within the body. The first is the Somatic Nervous System which is considered the Voluntary Nervous System. This system regulates a body’s interactions with the outer world, the skeletal group and muscular groups. The Autonomic Nervous System is deals with the inner world and rules the smooth muscle groups and glands, both of these systems descend from the Central Nervous System and the Peripheral Nervous System. As you know the Central Nervous System has to do with the spinal cord and the nerves the come from that area of the base of the spinal cord in the brain stem and throughout the spinal system. The Peripheral Nervous System is all the nerve centers that lie outside the Central Nervous System. The Central Nervous System is like the processing chip in a computer and the Peripheral Nervous System is like the key board or mouse. It is with information from the key board and the mouse that the computer system processes through the chip and the mother board the actual function of the computer.

When there is something wrong with the key board, for example a key gets stuckkkkkkkkkkkkkkkkkkkkkkkkkkkkkk, the information recekkkived and processkkked by the compkkuter is jumbledkkk and errorskkk and other issueskkk interkkrupt the kkk smooth kkkkkkkkk operatkkion of thke cokkmputer kkkk itsekkklf.

Since the erkror onkk the key board is akkutomatically ockcurring. The operkkkator can dko little to stop this error exckkept to replakkce the keykkboard.kkkkkkkkkkk

Within the body, malfunctioning nerves that are attached to the autonomic nervous system are not replaceable. Once they develop issues, the body itself is left to try to adjust, work around the malfunction or use medical intervention to stop the nerves from continuing to fire. Sometimes these nerves stop functioning. In this case the body must try to adjust, work around the non-function or find medical intervention that compensates for the lack of the firing of those nerves.
Of greatest concern for someone with this condition is whether or not these nerves are moving to atrophy, that is to say those nerves are dying. This creates a condition that is degenerative and can be life threatening depending on what autonomic nerves is experiencing atrophy. Recently I went to Vanderbilt University and discovered that the autonomic nerves that malfunction in the cardiovascular system because of a specific type of dysautonomia called, neurocardiogenic syncope, are NOT moving to atrophy. This is good news. Even though there is a stuck key in that system, so to speak, the entire key board is not likely to go bad, meaning, I am unlikely to suffer a condition that worsens over time and causes cardiac arrest, stroke or other long term, deadly and irreversible issues.

However, dysautonomia is not just a cardiovascular illness. It affects a myriad of different automatic functions of the body. I am working on returning to Vanderbilt’s Dysautonomia Clinic to be evaluated in other areas of autonomic functions. This appointment could be as much as a year off; however, it is important to ensure that none of my autonomic nerves are in atrophy, to the extent they are able to determine this.

For example, I have known that I have been B12 deficient for several years now, a condition alone that can cause terrible body and mind issues. The absorption of B12 is an automatic function of the body. Suffering for dysautonomia, my body is not absorbing B12. I now take B12 shots once per month and take B12 sublingual daily. The idea is that to compensation for this stuck key, I must flood my system with enough B12 that my body has B12 to utilize without storing it for later use. B12 is typically processed and stored in the upper intestines for use as needed. By flooding my systems, I work around the processing and storing and ensure cells, especially brain cells, have B12 in my system to use directly.

Unfortunately, this delivery method is NOT as efficient as the one nature created for me. During the years that I went undiagnosed, I literally loss brain function. Specifically, I lost significant executive function.

The term executive function describes a set of cognitive abilities that control and regulate other abilities and behaviors. Executive functions are necessary for goal-directed behavior. They include the ability to initiate and stop actions, to monitor and change behavior as needed, and to plan future behavior when faced with novel tasks and situations. Executive functions allow us to anticipate outcomes and adapt to changing situations. The ability to form concepts and think abstractly are often considered components of executive function. CITE

 
Additionally, short and long term memory is affected by B12 deficiency. Both the executive function and memory functions have improved with B12 treatment and I am in a cycle of B12 flooding and then B12 deficiency. Some restoration of brain pathways has returned and it is likely that I can continue to improve. However, I do not anticipate ever returning to the mental function and regaining memory functions as they were in the past. Tony likes to say, “Her mind used to be steal trap. Now it is like a small sieve, sometimes things slip through and sometimes they don’t.”
As a practical example of this deficiency, when I received my book back for edits from Llewellyn, I could not remember writing any of the pages of that book. It was literally as if Llewellyn sent back some file someone else wrote. This was not the first time that this had happened to me. I received an email around the same time where someone sent me a piece of an article. I loved the article and wrote the sender to ask who had written it and how to get in touch with them about perhaps referencing the article in the future. The sender wrote back with one sentence.

“You wrote it.????”

I didn’t remember writing it all. A quick search of my computer and I was able to locate the Word document with my own notes of reference for the full article. I had obviously written the article and couldn’t even remember doing the research.

At the time I was unaware of the B12 issues being caused by Dysautonomia and didn’t understand that my memory was being affected. My sister Sarah and I have had several miscommunications that stem around this very issue. Recently, I saw someone on FaceBook and wrote her describing the person as someone from my past. After talking to another person, I realized I was confusing two women with each other. Women I had meet YEARS apart and who had little in common other then the color of their hair.

Sarah has also told me about entire events that happened with me present that I have no memory of. All of these occurring before the severe decline of my health.

I also have difficulty dealing with strong emotions. I have found when my B12 levels ebb, I am more likely to swing, what I not so affectionately refer to as, hot and cold. One second I am furious without real reason or understanding then the next I feel like I swim above these bizarre and inappropriate emotional reactions and am able to regain control. I can only imagine that dealing with me in one of these episodes is like dealing with two different people. At home, I can disengage and I have code words that let my family know what is going on. They also have code words they can use to help me understand that I might be caught in one of these strange emotional swings and given a minute or two I am able to right myself under their direction.

But what about those around who aren’t privy to this information, I can only imagine that I come across as unstable. The way I dealt with my fear that I would appear completely nuts was to avoid anyone who might notice. Looking back that is not a coping mechanism I would recommend. However, I live now and lived then in fear that this documented and medical condition wouldn’t be seen as illness, just bitchiness. Or that if I tried to explain I would appear to be giving excuses for my behavior or someone would think that I am less of a wife, friend, mother for what is and has happened to my body and by proxy my mind.

This particular issue also prompted me to want to save up my energy. The less physically, emotionally, mentally and spiritually drained I am, the less likely these episodes are going to happen. Because I value Tony and my son above all, I had a tendency to ignore calls and people in favor of ensuring that I was at optimum performance when I dealt with my family.

I know that I deliberately missed rituals and other rites because of my further concern about what the use of that energy would do to magical circles and those I would be charge to protect within them. I have been part of a few rituals and done a few rituals; however, I am still working these details out. I do not wish to harm others magically, inadvertently or otherwise. I have done some solitary rituals and spent twenty-four or more hours recovering from that work. Part of me figuring this out is trying to find the work around to this particular issue.

I am sure when I haven’t called, attended a ritual or participated in some other event has hurt some feelings. I believe that I have felt guilty mostly because I have not found a way to honestly communicate why these things are occurring. Now I have.

I have agreed to tentatively work with one student just recently and only because I have known this woman for years and years. I miss the connection that spiritual working with others gives me and I am not sure how this experiment is going to work out. At least now I know she will know what she is getting into with me at this point in my life. However, I think going forward sharing the code words that my family has developed may help me deal more successfully with others.

RED DAY: Red days are days when I am not thinking clearly and am suffering extreme fatigue. On these days I spend significant time in bed and take up to three naps per day. On these days, my family knows that simple physical tasks may be beyond me and that they need to take up any slack my inabilities create in our home. I have RED DAYs about two to four times in a two week period.

I AM CONFUSED: Sometimes, this confusion is easily spotted by my immediate family and friends. It is noted when in the course of a simple conversation I get lost. I lose my train of thought. I stutter over words like a broken record. I will be talking along and then suddenly get stuck on a consonant. I used to try to talk through these episodes and have found that stopping, breathing and then trying to speak what I wanted to say in a different way is the best course of action. I can also get confused about where I am what I am doing and what is going on. OR, someone is talking to me and what they are saying is not making sense for no other reason that it just sounds like gibberish. These episodes happen about once or twice a month and can be counted on occurring after LONG DAYS or during times of high stress. If you recall, I had to ask Judge Dole what the question I was answering was while I was answering the question. Sometimes telling my family or my friends, I AM CONFUSED, gives them the message, “I want to be around you, however, stressful, emotional or important conversations are not good right now.” My family tends to change topics to silly things, my Sarah tends to sit with me in amiable silence and my new friend Abbye has become the queen of general chit chat about everything from crochet to knitting to what is going on in her life. Abbye, Sarah and my family understand I may not remember much of anything after I announce my confusion and they understand staying with me is an act of acceptance that I completely cherish.

LONG DAY: When I tell my boy it was a long day, I am describing that I have been to one or more appointments (doctors, lawyers, intense or serious phone calls with people or meetings with government officials) and that those appointments have required me to really focus, really pay attention and really put forth energy and effort. This means that I am going to easily distracted. My son loves these days best because I am more likely to have word confusion. Saying things like, “I think I need to hop in the tub and sleep.” Of course, I mean bed and my brain just decides that tub is going to mean bed instead. Tony has learned to correct my speech gently if it continues and step in when I show the distress these reactions cause me. I freeze, feel upset and ashamed. Tony will look at me and smile and say, “I got what you mean.” My son teases me and I tease him back. My Sarah repeats my sentences correcting my mistake in an even tone without judgment. Abbye seems to just accept that I speak funny and mentally interprets my conversation without letting on. They have each found a way to help me deal successfully with these situations that is suited best to them. Of course, I am comfortable being this way around these people. I am working on being comfortable being this way whoever I am around. I am aware that around certain people I am more concerned about how I appear and put Herculean efforts in to appear as normal and unaffected as I can. This has to change so that real and honest interaction can begin with those I love. Long days are sporadic and take about twenty-four to forty-eight house to recuperate fully from. However, usually a good night’s sleep resets my ability to successfully interact.
In regards to LONG DAYS, I tend to take calls a lot when I have had them for people that I really want to connect with. I think this causes me to have really bad interaction with people and I feel overwhelmingly guilty when I want to use a LONG DAY as a reason to not continue the interaction. I worry that the person won’t call back or doesn’t understand that the desire to interact with them is so strong that I would almost just be willing to stay on the phone and listen to them breathe or talk than hang up. I recently had a conversation with my sister for this very reason. I honestly don’t remember much of the call and I hung up and slept better just because we had touched base. I am not sure how to reassure myself or others in this situation and am willing to take suggestions.

After some other issues are resolved, I will hopefully be trying some ADHD treatments that might improve this function. However, my medical treatments right now are focusing on stabilizing my health. So this little issue, in the grand scheme of things, is not a priority.