Introducing Dysautonomia & MCAD

This Vlog Talks about why I went to a Vlog and what my condition is. I also discuss trying to get a diagnosis of MCAD.

During this Vlog I talk about The Dysautonomia Project, the book and website. I also talk about Never Bet Against Occam by Dr. Lawrence Afrin. Please like my Token Life Facebook page.




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.



Keep On – Surviving a Down Turn

Keep On – Surviving a Down Turn

Last week, I crashed very hard. I spent three days straight doing little to nothing while I waited on some test results and a doctors appointment to address what was found. This has lead me to think about how this down turn is different from past down turns.

  1. You Know When It Is Coming: People with chronic fatigue or illness know when bad times are coming. They monitor their body in a more intimate way than others. I knew this was coming about six weeks ago. I could tell that everyday I had fewer and fewer tokens to use and I found myself crashing hard at night, going to bed earlier and earlier. What I have learned is to take action when I see a downward trend in my fatigue levels and not wait.
  2. Take Action: This goes to a core issue that I think all Token Lifers must deal with: having a medical TEAM on YOUR side. For me, I have a solid relationship with my primary care physician. (There is another whole blog around selecting your physicians and having a primary care physician.). Most Token Lifers will have different doctors of different specialties. What Token Lifers need is a doctor who coordinates their care. Someone who gets ALL test results from all physicians and then cross references those when you visit. Someone who can in turns stream line your care and send you to specialists with very specefic instructions about why you are seeing them.  Further this primary care physician should know what their role is with you. An internist is an excellent choice for this coordinating care physician (mine is an internist). I went to this doctor and told her that I needed a coordinating care physician. I told her that I knew my body and I needed someone who would listen and respond accordingly. After years of working with my CCP (Coordinating Care Physician), when I show up and say, “I am fatigued, something isn’t right,” she listens to me and we always formulate a plan. This involves doing blood work and checking levels that have caused issues in the past. That is what I did several weeks ago.
  3. Scale Back: While I waited on these results, I scaled back my activities. On another blog, I was posting a daily blog and I stopped. I was pressuring myself to do other daily activities that are important but not necessary. I let go of lots of things and only allowed myself an hour at most a day to work. In my Token Life I know what is my base activity for a week is. These are things I have to do no matter what in a week. I let go of everything else. For me this is my water aerobics twice a week, my little part time job that takes eight hours a week, and any doctor appointments. I continued to go to water aerobics but scaled back how hard I worked out. I will get out of the water if I think I am using too many tokens on the activity. Last week I was able to do my little part time job and then hit rock bottom.
  4. Stop. When you hit rock bottom the sooner you accept your place and spend time resting and recovering the sooner you will be back on your feet. I have daily accountability partners (John and Disa) that I answer to. I posted in my family’s private Facebook group giving everyone a heads up. I try to set very, very small goals for myself and if I don’t complete them that is okay. Nothing is as important as recovering from hitting rock bottom.
  5. Ask for Help. This time, I had my son drive me some places so I wasn’t using tokens in that way. I told my son and husband that they would be cooking and doing the normal chores because I would not be. I basically let everyone I know, I was in a temporary, semi permanent timeout.
  6. Try Different Things. When my test results came back, I DECIDED – not the doctor – I DECIDED – what needed to change in my care that would help get me back in the game. After I read the results and consulted past results, I decided what I needed to do that would be different. I went to my CCP and told her what changes I wanted to make and together we settled on a new plan of action.
  7. Give It Time. Since the changes started to be made about four days ago, I am seeing a daily incremental increase in energy levels and tokens. I am seeing a change in my attitude and how I feel. I have a new plan of treatment I will be working for the next few weeks. And I would be foolish to start right back at the same level of activity. I will do a little more very day and I will continue to focus on healing and resting. I will give these changes time to take affect and I will see what happens in time.

What this episode has exposed for me is how many different types of support I have put in place in my life to better utilize the tokens I have and gain back tokens I have lost to my disorder. I hope to explore these slowly over time with you and help you better create a life that is more than the sum total of tokens your illness has given you.

Calculating Tokens – ADDENDUM

Calculating Tokens – ADDENDUM

Addendum:  After writing about how to find how many tokens you actually have, I realized that some of you will add your tokens up and then find you have more than 100. Suddenly you may think you MUST have at least the same or more energy than that of healthy people. That’s okay! You are simply not thinking in terms of the percentage. For example, if you feel that your condition causes you to have 75% of the normal person’s tokens then you just need to do some math to figure out what a “normal” person’s tokens would have been.

x of Tokens = % of Normal

For example, you add your actual tokens used and find you have 167. It is your guesstimate that you only have 75% of the same amount of energy as a healthy person. We take 167 divided by .75  or 75% and this gives us 222 or 100%. The number normal people would have as you have judged energy tokens. Healthy people wake up,in your token system, they receive 222 tokens. You receive only 167.

Let’s do another one. You add up your tokens and find you use 225 tokens a day. After some research you realize that people with MS have about 65% less energy than healthy people. Take 225 divided by .65 (65%) which equals 345 (rounded off). This means that healthy people in your token system have 345 tokens. You only are using 225.

Healthy People get x Tokens, I got x Tokens

We can also think about this another way. Let’s say that in your own mind, you decide that healthy people should get 500 tokens a day. You do the exercise and find that you only are using 346 tokens. For this go to the percentage calculator. Put the smaller value in the Value 1 and the larger  value in Value 2 to calculate your percentage. In this example, you are using 36% of the same amount of tokens healthy people use in your system.

Actual Health Number Values to Calculate a Percentage

Another way to think about this is to subscribe something you can actually measure and compare it to normal, healthy adults. For example, my aquatic aerobics friend would know how much of her lungs were removed – what percentage. Let’s just guess that 47% of her lungs were removed. In her system, the tokens she thinks healthy adults receive should reflect that she has 47% less than a health adult.

Conversely, I have neurocardiogenic syncope. My heart when I was 32 years-old rested at 96 beats per minute (bpm) and a healthy adult rested at 72 bpm. When I put this to my math professor friend John Umbras. He suggested using this chart to help me figure out my percentage. If I throw out the column for athletes and people in excellent condition, that leaves me five columns. Each column is attributed an equal percentage, 20%. In essence, I have only 20% of the tokens everyone else is given because my resting rate is in the poor column. When I count the actual number of tokens I use in one day, then that number represents 20% the actual number healthy persons have or healthy people have five times the number of tokens I am given.

This isn’t good enough for me however. The fact is now my heart rate rests at 110 beats per minute sitting and around 122 beats per minute standing and walking normally. In this case, we are getting in to math when I was barely able to pass math in college. Even I am not curious to know how many tokens I have LOST because my bpm has increased over time. John is a real college math professor and he and I will be posting another post about how to take numbers that are larger than normal and using those numbers to figure out what that means for tokens in actuality. Subscribe to this blog for updates on calculating tokens.

Activities Cost x Tokens

One final way to do this is to think to yourself how many tokens activities cost in general. If you think, for example, that it takes you 20 tokens to cook a healthy meal, 10 tokens to drive through and eat at home, 5 tokens to have food delivered and eat at home, and 45 tokens to go out to eat, you can start making decisions about how to spend your tokens. It may be more efficient to have pizza delivered every day than cook a healthy meal. Of course, most Token Lifers know that poor eating decreases the amount of energy they have over time. Despite the immediate stress placed upon your energy out put, the long term effects of cooking healthy meals may actually increase your total energy tokens available on any given day.

Tokens Have the Meaning YOU Give Them

It is important to remember that energy tokens are totally arbitrary. What you determine equals one energy token is not going to be the same. It would be a mistake to think that everyone will assign the same token value to the same activity. For example, earlier I said that 1 token = getting up, getting dressed, brushing teeth, and brushing hair. This is true FOR ME. In MY token system 1 token equals that. In MY token system putting on make-up and actually doing my hair (blow drying or flat ironing it) costs another token. In MY token system if I flat iron my hair after I blow dry it, that is another token.

Getting dressed and ready for my day can cost me up to 3 tokens, in MY Token Life.

If I asked my husband how many tokens it took him (a healthy 40-something man) to get dressed he may say zero or 1. This is because we do not figure energy tokens in the same way (For Stone, this is also because he does not wear make up and is bald. When he shaves his head he is probably using more tokens than I do to get dressed.).

I found that if I sit down while I blow dry my hair and put on make up I can conserve about 1 token. That is 1 more energy token I wouldn’t have had if I stood to do this activity. This is only true because my condition is all about how hard my heart works. Sitting, my heart now rests at about 110 bpm. Standing it rests at about 120 bpm. You can easily see that whenever I can SIT I am saving energy tokens versus standing.  This is something living the Token Life taught me. After I understood how many tokens getting dressed was costing me everyday, I could then consider ways to save tokens. Some days that means I don’t do make-up and barely brush my hair. Other days when those activities are necessary (like today because I am doing an appearance at a book store), sitting while I accomplish these tasks is to my advantage.

You can begin to see that A Token Life is reliant upon having a personal understanding of your own token system.   Take time to develop it, think it over, and explore the idea of a Token Life and what it means to you.

However you go about finding your energy tokens, you should be comfortable with that number. The idea is to give you some tangible number to work with. In future articles we will be looking out how to save tokens, how to gain more tokens, how to increase the number of tokens we have every day over time.

In the next blog we will look at how knowing our TTT can help us help our family, friends, community, and doctors understand us and help us better communicate our physical condition and abilities. Then we will look at how we can manipulate inflation so that we can get more life out of less tokens. Stay Tuned!