One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Saturday, October 20, 2012

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.

1 comment:

  1. Lydia, I am proud of you for sharing such a private and emotional part of your life. Kudos to you for taking charge of your healthcare! We love you all.