F**K SURRENDER: Dysautonomia and MCAD

My life for many years has been about surrender. Today I am saying: FUCK SURRENDER.

One out of every six people who read this could be suffering right now from Mast Cell Activation Syndrome or Mast Cell Activation Disorder. I think I am one of those people. I am starting on my quest today to prove it.

For those who haven’t known me for years, let me explain.

When I first wrote my first book, I signed with Llewellyn Press and then promptly took suddenly and lifealteringly  ill. Even though before that my life had been marked by seriously strange and rare occasions of horrible illness. It was nothing to the horrible downturn my health took after signing. I lost my contract and all the pre-book momentum I had worked to gain. I withdrew from the scene related to the book to like my wounds and learn how to deal.

I had a litany of strange and weird illness strike me down with even stranger presentations before that notable downturn. All these times of weird eventually cleared up and I was left with, “Wow that was medically strange.” Not an explanation, mind you, just “weird.”

Nearly everyone who reads this blog knows that this eventually has lead me to a diagnosis of familial or congenital neurocardiogenic syncope, an extremely rare and verifiable disease. One I had verified at Vanderbilt University. What most do not know is that this disorder, genetic condition DOES NOT really explain all the other weird symptoms and tribulations my body puts me through on a daily basis.

Enter Dysautonomia.

Dysautonomia is an umbrella term used to describe disorders of the autonomic nervous system (ANS)  (Freeman, Goldstein, and Thompson 2015). I liked this term because I felt it better described what I was experience: a whole bodily system failure. For many years I have religiously followed Dysautonomia International, an organization for connection with others who suffer, research, and dissemination of information.

Recently this lead me to purchase the book The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients. Also those who follow know that about six weeks ago, anomalies in my son, Tree Bear’s test results have me worried that he is similarly afflicted. I received my copy this week and read it in one sitting.

What gave me pause was the chapter called The Triple Threat: POTS, MCAD, and Connective Tissue Disorders in the Dysautonomias, by Lisa Klimas, MS (Freeman, Goldstein, and Thompson 2015; page 131) and another chapter called Mast Cell Activation Syndrome, by Lawrence B. Afrin, M.D. (Freeman, Goldstein, and Thompson 2015; page 135. I read these chapters with a sort of out of body understanding noting how many of the symptom boxes for MACS I could personally tick off.

As is my way, I sat on that. Yesterday, I ended up at a quiet dinner with my husband and was telling him about these chapters, upset I couldn’t remember the acronym. With a little help from Google, I found it and started using Wikipedia to tell him about the disorder. He was, like I, cautiously optimistic about how many of the symptom boxes I check off. I went home and re-read those chapters and noticed that Afrin had a book out called Never Bet Against Occam. The book was expensive and I downloaded it anyway. After about two hours, I was completely freaking out. This book could accurate describe and explain every single “weird” medical thing I had ever experienced.

As I read I learned that Afrin and others had successfully diagnosed these people with an actual disorder AND TREATED THEM WITH GREAT SUCCESS.

and treated them….

with great success……

I started reading out loud some of the excerpts from the book. My husband at one point said, “You made that up. The book doesn’t say that.” I turned the Kindle around and pointed. He sat there mirroring my absolutely stunned expression. My husband asked, “Did he [Afrin] interview you?”

I started to cry.

This morning, after some research, I made an appointment with a recommended doctor in Atlanta. I have an appointment with my dermatologist for the lesion on my leg and I know what test and biopsy I want them to do in preparation for the evaluation with the new doctor next week.

Those who suffer with chronic weird diagnosis suffer with a constant battle between the idea that you are making stuff up and knowing in your soul something is really wrong with you. The thought that there is treatment that might alievate this fatigue I battle daily is…. undiscribable.

My husband worries I will get my hopes up again with no resolution.

I am worried that I am going to suffer the rest of my life trying to fulfill all the god and goddess have called me to do with a broken body.

Even if it isn’t MCAD or MCAS; it gives me hope that not all the answers about the bodies problems have been revealed yet and I am not crazy.   My body may be broken and my mind is just fine.

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Devastating News & Lessons Learned

The past few weeks have been difficult for my family. My boy, who has been known in all my writings as Tree Bear, got some disturbing test results back from a routine doctor’s visit.

With my history in Dysautonomia, I was concerned given some of the results. He has been battling a Vitamin D deficiency and clinical fatigue which we have been treating as a case of depression.  As he looks to transition into a new college program later this month, I decided to request a test on other vitamin levels (B12/Iron) and have his primary care physician test his inflammation levels.

Several weeks ago those levels came back abnormally high without any known reason.

Additionally, I noticed Tree Bear’s acne was becoming unusually pusie with discolored pus (browns and greens) on his back. Concerned, I took him to the dermatologist who advised he had a bacterial skin infection and diagnosed a common antibiotic.

The next week, Tree Bear started having heart burn and digestive distress, including throwing up. I took him to his primary care physician. Concern over the physical exam leads them to perform an ultrasound where Tree Bear is diagnosed with splenomegaly.

By this time, between the vitamin deficiencies, the abnormal inflammation levels and the splenomegaly, I am concerned that he is showing all the signs  and symptoms of someone suffering from dysautonomia. The genetic disorder that has devastated my physical health for so many years. I research providers at Dysautonomia International and see that one doctor is located at the Sibley Heart Center part of the Children’s Healthcare of Atlanta network and Emory University.

We get Tree Bear scheduled for evaluation for dysautonomia. At the appointment at Sibley Heart Center, an rhythmic anomaly is noted during the EKG and coupled with the vitamin deficients, splenomegaly, and inflammation levels, Tree Bear is given a “more than likely than not” diagnosis of dysautonomia. A diagnosis that Tree Bear is still fighting accepting. For him, dysautonomia is a medical boogieman who took his mother’s vitality and health from her right before his eyes. Convincing him that a healthy lifestyle and treatment early in his life would help him live a very different life than my own, is an uphill battle.

mom-and-baby-hands-400x400And all of this does nothing to address what dysautonomia experts call “secondary issues” a diagnosis of dysautonomia indicates. If you have diabetes and then develop kidney disease, kidney disease is a secondary health problem caused by the diabetes. In dysautonomia, the secondary issues often are where the primary symptoms spring from. For Tree Bear, the splenomegaly, inflammation levels and vitamin deficiencies all are rooted in the genetic disorder of dysautonomia, and are considered a secondary issue that requires medical attention. Often fatigue in dysautonomia is actually a manifestation of secondary issues like vitamin deficiencies, secondary infections and viral infections someone is more susceptible to because of dysautonomia.

In order to get real serious about Tree Bear’s treatment, I immediately switched him to work with Heather at Gwinnett Center Medical Associates. Heather is a great provider who has, from the get go accepted that I was that “weird” patient who has really educated herself. She acts as my personal Coordinating Care Physician. This means, she automatically gets all test results from all specialists and I have easy and great access with her nurse, Shari, to see that any tests done by Heather get sent to the appropriate specialist.

Heather saw Tree Bear and we immediately tested for mono or Epstein Bar, did an IG panel, and retested his vitamin D levels. I knew from my history, that low IgA levels are often an indicator of dysautonomia.

Today those results came back, Tree Bears’s IG levels are clinically low, his vitamin D levels are barely passible, and the Epstein Bar test clearly showed a previous infection with some viral load.

Tree Bear is schedule with a new immunologist and I spent most of this morning, going over his results, setting up online access to his different doctors, and bringing his biological father up to speed. Then I broke the news to Tree Bear myself and discussed what I know will be done Thursday.

That’s The Situation AND…

When I talk about the clinical stuff, that is all it is, clinical stuff.  It is me sticking to as close to medical, testable theories as possible. And I am a mother. Tree Bear’s mother. For the past two years I have been treating Tree Bear like he was a teenager who was depressed, angry and lazy, like many teenage boys can be.

I am a bit upset with myself that I ignored the symptoms for sometime.

On the other side, I am so grateful for the personal attention I have paid to my own condition and test results. I am glad that I had partnered with Heather and knew if I took my most precious boy to her, she would listen and help me figure out what to do and where to go. It feels like dumb luck that I knew to ask for the inflammation panel, the IG panel, and check the vitamin levels. It wasn’t. It is the hard experience of my own battle against dysautonomia. It was the complete understanding that this is a genetic disorder that Tree Bear would be highly susceptible to because of his genetic link to me. Tree Bear will never again be told he is being lazy because he is fatigued. He will never suffer through a diagnosis of hysteria.

Tree Bear is learning directly from me how to interface with doctors and I am giving him lots of room and education to make his own decisions. Tree Bear has asked for the table tilt test to be done to confirm the diagnosis and I will encourage him to go to Vanderbilt University for further diagnosis and workups.

There is much that I can be grateful for in all of this.

Lessons Learned

I have learned a few things about dealing with doctors over the years as I battle dysautonomia. This chapter in my journey has taught me a few things about dealing with a chronic disorder and children.

  1. Doctors don’t always know. When I asked for the inflammation panel, Tree Bear was very resistant and his primary care physician even more so. Even I felt I might have been being a bit over protective. I KNEW that high levels of inflammation could indicate dysautonomia, just as I knew that IG levels are important part of dealing with dysautonomia. Too often, mothers who KNOW things let doctors and children talk them out of that knowledge. If the test you request are negative, great! Doing the tests when there is sufficient reason is never a bad thing. More information in chronic illness is always best.
  2. Tree Bear has to be part of the solution. I have to find ways to get him on board with this diagnosis if he is to stand a chance of a healthy life his entire life. Children of any age deserves to be educated about their condition. I have order the Dysautonomia Project book to give to Tree Bear to educate himself. He has to buy into this diagnosis and this means talking to Dr. Hebson into allowing  Tree Bear to have the table tilt test.
  3. Chronic Illness needs all parenting partners on the same page. I spent time this morning talking to Tree Bear’s biological father. To say that we don’t get along is a bit of an understatement. However, Tree Bear needs his father’s support and encouragement to eat healthy, drink water, exercise. Further as Tree Bear’s father, he has the right to know and have access to all the information. After explaining everything to Tree Bear’s father, I sent him all the access information for the various portals so he could look for himself. How I get along with Tree Bear’s dad has no place in a discussion about Tree Bear’s condition. Keep it clinical and on point – just discuss the illness and treatment options. I also sent links to Tree Bear’s dad to get educated about dysautonomia. My hope in all this? Maybe he will see something that I miss or will find some suggested test or treatment that I haven’t run across yet. Fresh eyes and perspective can be very valuable when dealing with chronic illness.
  4. Working against chronic illness, requires a chronic commitment to persistence and perseverance. At least once a week, I spend an entire day thinking about my condition and current treatment plan and now Tree Bear’s condition and current treatment plan. I think about what I can do to improve my health and what other tests or options for treatment I might have not taken advantage of yet that I could. The reason disability exists is to give those who are disabled the time they need manage their chronic or permanent illness or injury. Make sure that you take full advantage of that.

Author’s Note: Tree Bear is 18 now and as a mom I still see him as that 10.5 lb, 27 inch baby I gave birth to 18 years ago.

A Token Life, A Valuable Life

A Token Life, A Valuable Life

Recently Representative Cresent Hardy (R; NV) gave a speech that implies that people who have disabilities are a drain on society. As a disabled person, I work each week at a little job that allows me to work online and complete a report for an advertising company. I have this job largely because I can do it faster than anyone else. I was let go from this very job for one week before the client and company asked me to return immediately not being able to find some abled bodied person who can do what I do as well as I do it and as fast.

That said, every week, I wait on the able bodied people to do their job, so I can do mine. This week, while I was waiting, I was left thinking more and more about Hardy’s sentiment about the disabled.

Hardy’s words play on the very soul of those who are disabled. The majority of disabled, from my sister-in-law with uncontrolled and unexplained seizures, to the increasing number who also suffer from my condition I am meeting through my blog, live a life worried about being a “drain on society.” It is a kind of constant companion in our souls making us worry about everyone around us.

When I started writing A Token Life, I was questioned why I chose that title. The title seems to suggest that life lead in a token way represents just a small amount of what is possible. Similar to giving something a token of attention, a token life seems to imply a person is only doing enough to get by, no more and no less.  A Token Life seems to suggest that I think the disabled are a drain on society.

I kept the title A Token Life because Token Lifers manage to lead Valuable Lives despite only getting a token of the energy able bodied receive.  The otherabled feed those without, provide emotional support to others similarly afflicted. The otherabled spearhead education and champion just and fair treatment by pharmaceutical companies, the healthcare industry and the government. These Token Lifers carry our elderly neighbors to doctors appointments being familiar with the difficulties of getting to the doctor ourselves. Even on our worse days, the Token Lifer does not lay in bed thinking of ways to be lazy and inactive. Our first thoughts are how we can talk our uncooperative bodies into getting up and going forth even though the body is never on board with the heart and mind.

To put it another way, the other bodied are allotted fewer spoons of sugar for the very bitter coffee of life. If you were to drink from their cups, the coffee would be just as sweet, if not sweeter than the able bodied who recklessly throw their sugar “energy” around on wasted time, and efforts and in speech that disables souls and create systematic divisions in our society.

I am disabled and have dedicated my life to being a minister. I do not get any payment or compensation for my work in my spiritual community. I am fortunate to be part of a community dedicated to service and inclusivity. This has allowed me to really serve Divinity in the way that I feel like I was called to long ago.

I am also beyond fortunate to be partnered to a human who has a great job and excellent medical benefits and is in good health. Thanks to President Obama and The Affordable Healthcare Act, the protection and coverage for my condition have been guaranteed. This allows me to work a very minimal amount, having self-care be a priority in my life without living at or below the poverty line like most persons who are legally disabled as I am. It is my ability to focus on self-care that allows me to work. It is an interesting symbiosis.

The poverty rate in Georgia for persons with disabilities is 30%. Thirty percent of persons with disability are living in poverty. This means that the ability for them to improve their situation through better healthcare, better diet, and supplemental intervention is absolutely denied them. Yet, this situation created by a systematic marginalization of the disabled and poor, is no excuse to Rep. Hardy and those who support his view, for the disabled to be a drain on society.

Rep. Hardy and his self centered assertions continue the myths that persons who are legally disabled would CHOOSE the life they have been forced to live by their condition. This persistent misconception that if given an able body with the responsibility to work full time, the legally disabled would choose a “lazy life of government ease” is absolutely ridiculous given the poverty rate a “lazy life of government ease” forces most disabled into.

Rep. Hardy’s words also perpetuates the most harmful myth of all: being disabled is some type of choice in the first place.  

I am fascinated by a society where circumstances beyond a person’s control somehow devalues them and is part of a person’s willful giving up of their own free will. I am further fascinated that a society structured to benefit the rich more than the poor, the able bodied more than the disabled, the white more than other races, the male more than the female, the acceptable “norm” rather than anything outside of that purported “norm,” this society, our society, sits around decrying the burden and difficulties people who are poor, not white, disabled, females, or outside the norm create.

In this society, our society, the system set up by the United States of America, I cannot afford the great treatments available to my condition – and remember, I am not living in poverty as so many of the other bodied in this country are. These treatments might actually restore me to a place where I could work full time and receive a salary again.

And yet, the very society that can only bemoan my status as a burden, are the same people who want to make it easier for big pharmacy to overcharge the United States. Big pharmacy does this because other industrialized countries will not put up with big pharma’s greed and regulate what they can charge for lifesaving and life altering medicines and treatments. Here in the United States, we would rather bitch and moan about the burden disabled people are, than act in fair and just ways to promote a situation that would help them help themselves.  Besides, corporations are people too and need more protection than actual, I don’t know, people.

It isn’t just how our society defers to the interests of corporations in matters of profit, the FDA drags it heels when there are known therapies that are widely accepted by other countries to help many with disabilities. To protect the monopoly of the corporations here, the FDA refuses to approve treatments and seeks to ban or regulate homeopathic treatments that have been proven safe and effective, while protection the individual corporations.

Then to protect insurance company profits, the US allows treatments to be denied coverage that could greatly improve the disabled’s productivity.Therapies like massage, nutritional supplements, intravenous infusions and types of exercise are disallowed, not covered then not available to those who are “draining” society.

All of this and the people that I know who are disabled are blogging and supporting and loving each other through their difficulties. We band together to educate and support each other through a hostile healthcare system and a society who values wholeness and heartiness when we were born with neither. Despite the amazing amount of obstacles other bodied face, we fight daily despite being misrepresented and actively worked against by our government and society.

Just because the likes of Rep. Hardy can’t imagine a life of contribution that is valuable in the face of these societal obstacles and physical disability, doesn’t mean it is true. My Token Life is a Valuable Life.

Rep. Hardy’s is currently hampered by a disability created from a lack of education and empathy in his life.  Fortunately for Rep. Hard, there is a cure for both: education and spending some time with people with other abilities.

To Rep. Hardy I would say:

I have neurocardiogenic syncope and dysautonomia. My disorder is genetic so I was born with it. I pass out if I get dehydrated, overheated, sick with a virus or infection. Because my disorder affects my immune system, viral and bacterial infections are common.  My illness is what is called a system wide disorder which manifests further by me have the conditions of FATTY Liver Disease with suppressed liver function, Hyperlipidemia caused by the system failure not eating habits, and Irritable Bowel Syndrome. In order to combat some of these issues, I have given up potatoes, rice and all gluten, as well as all, meats except for organic chicken, beef and fish, when I can afford those luxuries.  I shake physically when I get tired and because my heart rests at 115 beats per minute, I am tired often.

Despite this I attend water aerobics, at my own out of pocket cost, twice a week in attempt to keep my body and muscles and heart strong. This also helps with the chronic inflammation that dysautonomia creates.  Further my disorder makes taking generic medicines and antibiotics difficult because I have demonstrated anaphylaxis to most generically produce drugs and many widely available antibiotics. This predisposition to severe allergic reactions is why I must carry an EPIpen all the time. I do not know when the next allergic reaction will occur nor what that reaction will be to.

The most successful medicine I can take for my neurocardiogenic syncope, makes my blood pressure very low. It is the only approved alternative right now. Low blood pressure means I am more likely to pass out and my condition predisposes me to clinically low blood pressure. I have suffered two concussions from falls because of my syncope. This means on a daily basis I have to determine whether it is safe for me to drive or not.

The systemic nature of my dysautonomia means I have already lost my gallbladder and appendix and nearly 100 days in the hospital. Because my system is so sensitive the loss of these organs has greatly affected my overall ability to deal with the disorder. With my liver already showing signs of moving to Nonalcoholic Cirrhosis of the Liver, I am doing everything in my power to preserve that organ.  Further it has been medically proven that persons with dysautonomia struggle at greater numbers with depression and mental illness because of the effect of the systems inability to uptake critical vitamins and minerals into the body’s system. Minerals and vitamins that are considered supplemental by insurance companies and therefore, not covered.

I have only had one child because giving birth to the one I have contributed to exacerbating my condition. This happened because my condition was misdiagnosed until I was actually pregnant with my son and the healthcare field finally decided I wasn’t “hysterical” but had a recognized medical condition.  This happened because dysautonomia is so underserved in research and education at medical schools. I believe this is because the trigger for dysautonomia and neurocardiogenic syncope could very well lie in pesticides, gmo production and distribution, environmental pollution and contamination of our food system that the government would prefer not to address or think about for fear of losing the political support of powerful chemical companies.

There is a treatment that could help my condition and it has been rejected twice by my insurance company as being “unnecessary” or “not medically proven” enough to justify the expense. I can’t afford the nearly $6,000 plus a year to take that treatment. This is because my family already pays nearly $8,000 in medical deductible a year, and keep in mind, I am one of the lucky ones to be able to pay that deductible and have a partner who has a good job with good benefits.   

Given all that, I serve a faith based community of 75 people, am active in the US political process, keep my family’s home clean with their help and manage to work a “real” job eight to ten hours a week. I regularly meet for free pastoral counseling with multiple persons. I spearhead the donation and distribution of food for families in my religious community. I have taken temporarily disabled persons into my home while they recovered. I am the Executive Director of my church organizing services and religious teaching. I write a blog on leadership in the context of my religion. I write a blog about tips and tricks and encouragement for persons who suffer from chronic illness. I have had a book on family and spirituality published.  In the past year I only missed working my weekly part time job once when I was hospitalized for a severe allergic reaction to a generic drug that I took at the insistence of my insurance company to save money. This is the same situation I am in right now, because a drug I have successfully taken for nearly a year has been rejected in it’s name brand form and only filled in it’s generic incarnation. Yet, today I am going to go to work and worry about that possible issue when I am forced to choose to take a drug that might hospitalize me just to prove a point to the insurance company.

I right now am running the risk of someone like you saying I couldn’t possible be disabled and do all of this and then loose the SSI benefits my family relies upon to make ends meet.

In short, Rep. Hardy these are the daily challenges that I overcome while managing to serve my church, my greater religious community, my family, my secular community and work a part time job, all while being a drain on society.

What is your excuse?

Tired, Treatment & Genetics

Tired, Treatment & Genetics

Last week I came across my Facebook fed to find the story of Katie Davis. Reading how Katie was treated reminded me of the beginnings of my own disease when I was 18. I contracted Cat Scratch Fever (CDS). I spent nearly two  months being told I was hysterical and/or crazy. It was only diagnosed when my lymph node caused a lower right abdominal hernia. During that surgery, my lymph node, according to the surgeon, literally fell out onto the table because it was so infected. They estimated that I had been ill for nearly six months. Six months of flu-like symptoms that went untreated.

It would be nearly another ten years before I began to understand what was wrong and it would be another thirteen years before I began to understand how very serious the diagnosis I received when my son was born actually was.

I have watched as my own son grows up and experienced dizziness and light headedness, depression and other hauntingly familiar symptoms. Then last week after reviewing his annual blood work, I noted something of concern and took him back to his regular doctor and asked for a work up that would cover mineral uptake into his system and check inflammation markers, all things I have personally learned to look for when dysautonomia is on the table.

The doctor performed the test, convinced, as my son was, that I am a paranoid over protective mother. Then the doctor’s office called to tell my that my sons’ inflammation levels were high and that there was some mineral deficiencies. I already felt like this would be the outcome and had taken some preventive intervention by adding Iron, Magnesium, Fish Oils and Vitamin E, much to his consternation.   Now I am left trying to figure out what to do with him.

DI_Spec Group 1r4

The nearest Dysautonomic clinic is in Vanderbilt and I know from personal experience how difficult it is to get into see them. A quick Google Search reveals that there are few and far between doctors who are dealing with the over all issues caused by a diagnosis of dysautonomia. One national advocacy group has one doctor listed that I have already reach out to in an attempt to get my boy into see them. I am fortunate to see a cardiologist who deals with neurocardiogenic syncope (NCS) which is my specefic form of dysautonomia. However, it is now known that having NCS means that your entire system is not working properly and little seems to be known about this entire system failure.

Then this morning, my son woke up throwing up and complaining about feeling like his throat was closing up. His throat lymph nodes are swollen and coming on the heels of him complaining for a week about “gas re-flux” and “heartburn,” I can already see the signs and symptoms of a person battling dysautonomia. He is tired and sleeps endlessly. A little bit of activity and he is ready to sleep again. It just feels all too familiar, right down to my own husband telling me that I am worrying over nothing and that my son is just a lazy eighteen year old looking for excuses to not do things.

Just as I knew years and years ago when I was sick with CDS and everyone thought I was crazy, I know that my son has some form of dysautonomia. It is just a knowing that I can’t escape.

Today I have been thinking, as I have in the background of my mind since I noticed those blood test anomalies on my son’s work. What can we do differently with him that may help him avoid a life lived like mine – constantly battling fatigue and trying to figure out how to live with a debilitating disorder.

The problem is at eighteen he thinks he is invincible. Convincing him that my token life could be his is a very hard sell. So I will at least have the heart specialist evaluate him for neurocardiogenic syncope and then take him to my primary care doctor where we can talk about the avenues of treatment available to us.

The thought that I have some how passed this horrible condition on to him is nearly more than I can bare in conjunction with my own fatigue and my own illness management.

I am just tired. Tired of having such a rare and poorly addressed disorder. Tired of knowing that my best well never be a best I had hoped for my life. I am tired of choosing to cook a meal for my family or indulge in my passion of writing. I am tired of cleaning for an hour and then being done for the rest of the day and sometimes the next.

This is a horrible horrible disorder that I really believe we will find is directly linked to carcinogens, GMOs, and pollution activating in DNA the triggers that activate this disorder. Even knowing this makes me tired, as if the very obstacles to keeping this disorder from affecting more and more people are almost surmountable.

 

 

Token Life – A Story About How This Began

Token Life – A Story About How This Began

I might have gotten ahead of myself with this blog. Most of those I think who originally came to this blog, I assumed knew me already. I am learning that more and more are coming here who don’t. Let me catch you up.

I am a 43 year-old-woman who is on disability for suffering from neurocardiogenic syncope with dsyautonomia. Basically, for no known reason other than poor genetics, I have an Autonomic Nervous System that does not function properly. The list of symptoms this disorder combination creates is crazy long. More trouble some is the inconsistent presentation of the disorder given the inability of medical community to really understand the mechanism behind it. It is just easiest to say my autonomic nervous system is fucked up, in the crapper, completely dysfunctional.

This cause me to understand that my physical life is part of a cycle of periods of better wellness and worse wellness. At it’s worst, I will find myself hospitalized for periods of time to battle whatever the current presentation is of the disorder. At it is best, I life a daily life that is unperturbed by the disorder and only I would know I had it, if I didn’t write about it on line.

Despite being disabled, I am a reverend with a small congregation and community that I strive to serve. For me, this is my calling and how I reach beyond the confinement of illness to make the tokens I have every day count toward a greater good. I am also a writer. I have always been a writer of some form, from back in college as a journalist to know as a published author of non fiction blogs and books around spirituality and family, spirituality and disability, spirituality and trauma, and spirituality and leadership.  Of courses, my first role I play is mother to my almost an adult son and owner of Alice, the Service Dog.

I started writing and talking about A Token Life years ago when my health took its first severe downward turn. That turn changed everything. I lost my first book contract. I lost the ability to hold a full time job. I lost the ability to drive whenever I wanted to. I had to get Alice just to have some semblance of a life. I had to apply for disability to find a way for my family to financially make it through the loss of my income. Mostly, I went from being a balls to the walls kind of woman. I used to coordinate weekend spiritual retreats for hundreds of people. I used to be in a constant state of motion that produced a high level of successful work. Then I was suddenly not.

I was not capable of ever hosting a large spiritual retreat again. I was not capable of sitting up to finish edits on the book I had sold. I was not able to stand without passing out. I was not able to cough without passing out. I was not able to laugh without passing out. I was not able to regulate my body temperature. Suddenly the Southern Summers were times where I hid in air conditioned places instead of being out camping and hiking. I went from having boundless energy to having constant, debilitating fatigue.

I was lost.

Sitting in the bowling ally on my son, Sam’s, birthday,  I watched Tony, my husband, count out the exact same number of tokens to each of the boys attending Sam’s party. I watched them fist those tokens and run en mass to the in house arcade.  It then occurred to me.

I got up and life – the physical limits of neurocardiogenic syncope and dysautonomia – gave me less tokens to live my life physically than my husband or son got – two healthy people. When I entered the daily arcade of life, I was not able to play the arcade games the way I used to. I was only able to play a limited number of games and so I was very choosy about what games I chose to play. I was living A Token Life.

Since then, the language of tokens has been common in my house hold. Recently, some of my newer friends have started to use token language when talking to me, which has really warmed my heart.

Instead of getting tired, because I am always tired, I would run out of tokens before I was able to make dinner or grocery shop  or other daily activities. I began to wake up and mentally ask myself how many tokens I had and compare that with what I wanted to do today.

Of time, I picked up lots of little tips and tricks that I use to help keep my having more good days than bad. I then started meeting other Token Lifers – people whose physical life, like mine, afforded them less tokens than they used to get and less tokens than most others get.  That is how this blog came into being.

I hope by writing about my own struggles and the things I use to overcome them, I can inspire others to develop their own Token Life. A life of great abundance and meaning developed as an act of defiance against a physical life of limitation.

 

Surrender – Knowing When and How

Surrender – Knowing When and How

I get up every day a little tired. I get up every day a little light headed. I get up every day to a “normal” that most people would not be able to adjust to. As I adjusted, as I learned how to save and shuffle my tokens around to have the productive type of life I wanted, I came to the place of acceptance of my new “normal.”

Then the cycle of my disorder kicks in and I come to a period where even that maladjusted “normal” is not available to me. I get up fatigued, not just tired. I get up dizzy, not just a little light headed. I get up overwhelmed before I even get dressed.

#TokenLifers invariably face those days. The MS flares or the fibromyalgia flares or you are battling cancer and catch a cold. Suddenly the “normal” you accepted is out of your reach.

Oddly, I find I struggle with this most after a sudden downward turn in my health. I have had one recently. I can remember a day less than two weeks ago that is notable for all the things I don’t remember about that day. I knew that day was coming and had already taken preemptive measures, but #TokenLifers know that sometimes those days are going to come no matter what. For me, it is like my body suddenly fritz out. Nothing seems to work right. I can’t drive because I am passing out left, right and center. I can’t write because my brain doesn’t seem to want to put coherent thoughts together. I can’t do much of anything. I know I spoke on the phone with people that day and I really have no recollection of what was spoken about or why I would call someone in my condition.

Then things start to get better. The next day comes and the symptoms are not as severe. I am not shaking like I was. I am not thinking in some bizarre disjointed way. I am back on line, so to speak, and the reboot and recover to that dysfunctional “normal” begins. It is almost like my mind and body, who argue a lot, suddenly are locked in a battle of wills. My mind won’t rest quietly to allow the body to recover and pushes my body to recover. My body rallies as if a last minute burst of energy will make-up for the lost ground.

Then a day like today finally comes. I get up and I tell my body, “You win. I give. I will stop pushing.”

I give up the joy of water aerobics because it will do more harm than good.

I stop posting my daily posts for a few days or even a week or more because it does more harm than good.

I allow myself to fall asleep on the couch.

I allow myself to sit still and just be exhausted.

I let go of hating that I am in that place. 

I surrender.

What I have found in this surrender, is that my body seems to finally rest well. My body and mind find a harmony and compatibility that was previously missing and spurs me back toward better days instead of worse.  It is almost like all my dysfunctional systems let out a long, loud, large sigh and I can almost feel my body re-calibrating and rebooting to better instead of worse – away from struggle to balanced existence.

It is so hard to do this. There is so much I want to do, read, write. There are so many people I want to minister to. There are so many place I want to go. There is so much I want to do. Did I mention all the things I want to do?

Truth is that when I am at the best health I can have, this tension between what I am actually capable of and what I can push myself to do helps breed a success that I would not have had. However, when the bottom falls out, this tension only adds to my frustration, anger, irritation, worry, and anger.

I get angry because I took two days to do “mostly”nothing which was really a bunch of little somethings instead of taking two days to do “nothing but sleep.” When I am at the best health I can have, one day of mostly nothing is enough to keep having good days. So why isn’t two days of mostly nothing restoring me?

However, after experiencing a heavy dose of really bad health, it takes more than two days of “mostly nothing.” I need a few days of mostly sleep instead. The tension between capable and pushing, though, becomes a habit that is usually successful. Letting that go is  hard because of the fear.

What if I take a few days to do nothing but mostly sleep, and don’t return better? What if that break causes me to have months of really bad days versus a few bumpy ones? What if giving in somehow leads to giving up and it sets the best health day I can have down to being one where I can barely function? What if my readers stop reading? What am I going to miss when I am not on line? What momentum will my career loss when I take this break? What will my friends think – that I abandoned them? What about my parishioners? How badly will my family unit feel let down by my sudden decision to just stop and rest for three or four days in a row?

I imagine that most #TokenLifers live in this fear. We live lives that hard won. Every load of laundry folded is an accomplishment. Every dinner we cook is a banquet. Every time we can actually exercise we have overcome odds that suggested we would not be able to do these things. The prospect of giving any of that up is scary – so so scary.

Today, I surrendered. I turned off the TV. I let go of all the expectations I had laid upon myself while I was still trying to get out of bed this morning. I did only what was NECESSARY and then I slept. Tomorrow, I am thinking will be another day to do the same. To skip working out, to skip doing anything that isn’t absolutely necessary, and nap on the couch instead. I am not a healthy woman. And if what is left of my life after I spend a three or four days sleeping isn’t the same as it is right now? Well, then I guess those were just things, opportunities, people, family members who aren’t working toward empowering me and my #TokenLife. Which means I was wasting tokens on those opportunities, things and people, any way.

Do you need to take three or four or five or seven or fourteen days and surrender? Do you need to rest, really, really, rest? If so, what fears and angers are keeping you from doing that? What can you do to address those? How can you find a way to spend a little time surrendering now so that you can gain more better days than bad?

I surrender all.

I surrender all,

All to thee my precious Savior

I surrender all. 

Christian Hymn
Lyrics: Judsan W. Van de Venter
Music: Winfield Scott Weeden

Where are you at?

So today I am about half way back to my normal. I am trying new dosages of medications and trying some different general approaches. I have worked this morning at my office (read “Starbuck’s”) and am about to go home and have lunch and run my boy around town a bit before my church has a meeting tonight.

Remember recovery after a crash is a slow process. Give yourself space for that process. There is nothing wrong with that.