You Are Only One Decision Away From A Totally Different Life

"You Are Only One Decision Away From A Totally Different Life."  A few weeks ago, a high school friend of mine posted this quote on Instagram.  My heart stood still when I read it.  It was a scary reminder of that one decision I made on New Year’s Eve, twenty years ago.

I was a bright, young 27-year-old, living on my own in San Francisco.  I had worked my way up to a managerial position at technology staffing company and had a promising future ahead of me.

It was New Year’s Eve and I was tired.  I had worked a full day at the office plus I had spent the entire week before snowboarding in Tahoe.  I just wanted to go to bed, but I got a call from a friend who suggested we go out to the local bars.  I had a decision to make.  Do I want to just stay home and relax or go out and party with millions of other people on what is widely known across the world as the biggest party night of the year.  Going against my better judgement, I chose the latter.

My memory of that night is sketchy at best, but what I can tell you is that at around 1:30 am I flew out of the 3rd story window of an apartment building and landed on the street below.  The how this happened is not as import as the why it happened.  The why is because I made one poor decision after another that night, starting with going out to party in the first place.

My life has been radically different since January 1, 1997.  The broken bones, fractured skull, hearing loss, facial nerve paralysis, and permanent nerve damage are nothing in comparison to the severe traumatic brain injury I sustained.  It is an injury that cannot heal and one that has made every single day of my life a struggle.  The memory loss, forgetfulness, chronic fatigue, daily physical pain, occasional double vision, and aphasia that often accompany a TBI are all things I can manage, but it is the mental and emotional pain it causes the hardest to live with.

A TBI changes you.  It changes how you think and how you act.  It alters your ability to know right from wrong.  It takes away your self-control.  According to the website brainline.org, “individuals with TBI are often unable to function well in their social roles because of difficulty in planning ahead, in keeping track of time, in coordinating complex events, in making decisions based on broad input, in adapting to changes in life, and in otherwise ‘being the executive’ in one’s own life.  With TBI, the systems in the brain that control our social-emotional lives often are damaged. The consequences for the individual and for his or her significant others may be very difficult, as these changes may imply to them that ‘the person who once was’ is ‘no longer there.’ Thus, personality can be substantially or subtly modified following injury. The person who was once an optimist may now be depressed. The previously tactful and socially skilled negotiator may now be blurting comments that embarrass those around him/her. The person may also be characterized by a variety of other behaviors: dependent behaviors, emotional swings, lack of motivation, irritability, aggression, lethargy, being very uninhibited, and/or being unable to modify behavior to fit varying situations.”

In in some ways it is like being addict to a controlled substance except you do not have the option of quitting.  I have no impulse control.  I make poor decisions, I often get taken advantage of and I am left with severe depression, anxiety and PTSD.

Living with a TBI is a very lonely existence.   If you are lucky, like I am, you will have a strong family support system that will be your guiding light through the darkest parts.  My beacons of light have been my mother and my husband.  I have read that it is estimated that up to 90% of marriages end when a spouse sustains a brain injury. While I personally believe that number to be very inflated, almost all of the TBI survivor's I personally know who were married prior to sustaining a TBI are divorced.  Unfortunately, you can say the same thing about friendships and TBI.

I have lost more friends over the past 20 years then I care to count.  Even long time childhood and college friends.  Even the friends who swore they would never abandon me, and even the ones who have been through traumatic events and have faced unfathomable adversity themselves have given up on me and it isn't any fault of their own.  I manage to drive them away.  Everyone in this world has a breaking point, EVERYONE, and I now have the unique ability of brining it out in anyone I get close to.  I am like the Hulk but instead of smashing things to oblivion with my fists, I destroy them with my words.  Words that I can never take back.  Physical pain is temporary but emotional pain is permanent.  It is because of this that I no longer allow myself to get too close to people in fear that I will eventually hurt them and subsequently myself.

I can go on and on about this - heck, I can even write a book about what it is like to live with a broken brain ;), but that is not what this post was intended for.  I am writing this as a plea.  A plea to all the people out there, more specifically our teenagers and young adults, who will be faced with choices this coming New Year’s Eve and every other night of their young lives for that matter.

Don't make the wrong choice like I did!  This is the rest of your life.  Girls... no guy is cute enough; guys.... no girl is hot enough.  No party is worth it.  No beer is worth it.  No drug is worth it.  No shot is worth it.  No holiday or celebration is worth it.  It's just a night, but if you make the wrong decision it can be your last night or the last night you have any chance at a normal life.

Does this all sound too dramatic to you?  Then just ask my mother how dramatic is was for her to receive a phone call at 5:00 am on New Year’s Day informing her that her only daughter who lived 2500 miles away from her was in the ICU of a hospital fighting for her life.  Ask her how dramatic it was to rush to the airport, get on a plane and fly across the country for five and a half hours not knowing if her daughter would still be alive when she landed.  You are not just one decision away from a totally new life, you are also one decision away from giving a whole new life to the people you love too.  So please, choose wisely!

Aphasia - My Arch Nemisis

Aphasia is a communication disorder that results from damage to the parts of the brain that contain language (typically in the left half of the brain). I fractured my skull in two places, the left temporal lobe and the base of my skull.  I have Aphasia and it sucks.  Lots of people with TBI have it.

I can't remember words but it's not once in a while like when you have a word on the tip of your tongue and you can't get it out - for me it is constant.  It makes it really hard for me to have a conversation with people unless I take medication that helps me focus and lifts the brain smog!  I call it brain smog because it's more of a pollution in my brain from injury rather than "brain fog" because there is nothing natural about it.  Unfortunately, I can't take the medication everyday because if I do, I will develop a tolerance to it and it won't work.

 This is an off week for me.  I can't take my brain smog medication this week.  I don't know what I was thinking but I scheduled two meetings for today.  Normally, I try to avoid all social situations on off weeks, but I had to go meet with an ABA consulting company to start the long and arduous process of getting my health insurance company to approve behavioral therapy for my autistic son.  I had a hard time filling out the numerous forms and I couldn't concentrate.

After my meeting with the ABA company, I met with a nutritionist who specializes in children with disabilities.  It was a nightmare.  I couldn't remember words, I couldn't get my thoughts out correctly, and I just could not think.  I wanted to explain to her why I was having such a hard time talking.  I ended up telling her to go to my website when I left so hopefully she will put 2 and 2 together.

I have seriously thought of making cards - like business cards - that I hand to people when I first meet them that tells them what aphasia is and that I have it. Then maybe they won't think I'm stoned or just an idiot.

I tend to tell people who I just meet that I have a brain injury as soon as I possibly can.  I often see them staring at my partially paralyzed face with this look of wonder.  I can see the thoughts running through their minds, "I wonder what happened to her," "I wonder if she had a stroke."  It's like they have a virtual thought cloud above their heads.  I want to end their wonderment.  I also want them to be slightly compassionate towards me too because I feel ugly, I feel deformed and I feel totally self conscious.

I also prefer to write rather than speak, which is why I choose to communicate via text or email more so than talking on the phone.  For some reason speaking on the phone is harder for me than speaking to someone in person.  I just can't concentrate, my mind wanders.  I can't speak on the phone while I am doing something like cooking dinner.  I want people to know that they shouldn't take it personally if I don't call them.   It's not you, it's me.

Writing is somewhat easier because if I don't know the word I am trying to remember, I can just stop and take a break or search the Internet by doing a Google search on, "what's the word for ......."  Believe it or not, Google usually comes through for me.  But that doesn't mean I don't have difficulty writing.  On off weeks I simply cannot write my book.  It just doesn't make sense and I get angry and frustrated and that makes it worse.

I am controlled by my TBI.  No matter how much I fight it and try not to let it control me, I always lose.  So, I stopped fighting it, and now I am trying to work with it.  I'm trying to find some harmony with it, but it isn't easy.  It is just the reality of life with a TBI.

It's your body. It's your health. It's your life! Take control!

What if you were able to order your medical treatment like you order a meal at a restaurant.  You get a menu on the menu is a list of possible medical conditions you can have according to your symptoms.  You look through the list and you find what condition you have.  Then you decide how you want to treat it.  You pick the medication you want, the therapy and the procedures.  Of course you ask them for their recommendations since they are the experts, but you specify exactly how you want to treat it. If it's not to your expectations, you can send it back.  Pretty far fetched, I know, but when you learn about your health and understand how it can be treated, you can kind of order the entree prepared the way you like it.

When my husband and I decided we wanted to have a baby, I had problems conceiving.  Or so I thought.

After a year and a half of unsuccessfully trying to get pregnant, we decided to go see a specialist at a fertility clinic.  I will never forget our first meeting with the doctor.  I came in all prepared with my file that I got from my gynecologist.  It contained all of my records for the 8 years that I had been her patient, including copies of all the recent test results I had done in order to find out if there was anything wrong with my reproductive system.  I started to explain to him what we had been trying up to that point.  I talked about all the tests done that showed everything was working for both my husband and I and I said we came to him because we heard he was the best fertility expert in the city.

The doctor very quickly flipped through my file, not spending more than a couple of seconds on any page, before looking up and asking why we were there.  I turned and looked at my husband all confused and then back at the doctor and told him I didn't understand his question.  So he asked, "what is the end result you wanted from all of this?"  "This meeting," I started to say, "to discuss why I haven't been able to conceive."  "No," he replied, "what exactly do you want me to do?"  I thought about it for a second and I replied, "I want you to help me get pregnant because I want to have a baby."  The doctor closed my file and put it on his desk and said, "then my job is to help you have a baby, it's not to figure out why you can't have one."  He proceeded to explain that he would try every procedure possible until I got pregnant but that there was no guarantees.  If I wanted to figure out why I couldn't get pregnant, that was something my gynecologist needed to do, that wasn't his job.

The doctor was able to get me pregnant via IUI the very first time we tried it.  I remember being so happy when my blood test came back shortly after the procedure, confirming it,  my body was producing the pregnancy hormone hCG.   A few days later I had another blood test done which didn't give us the news we were hoping for.  The concentration of the hCG hormone in my blood was not increasing and I was informed that the pregnancy was not viable and that we would have to skip the next month's ovulation cycle before we tried again.  I didn't understand what any of that meant.  I had never asked any questions about how this whole pregnancy thing really happens from a medical standpoint, I just thought that the sperm fertilizes the egg and then 9 months later, you have a baby.

Two months later we underwent our second IUI and once again, the initial blood test showed that I was pregnant, but a subsequent blood test revealed that my hCG concentration was not increasing.  I was devastated.  Why was this happening?  I was ovulating, my follicles were releasing eggs, my husband's sperm count was through the roof.  It didn't make any sense.

I called the fertility clinic and cried to my case nurse.  I asked her why this was happening and she suggested that we go through my file and read through all the reports.  She was going through the test results with me on the phone and they all seemed normal.  Then she said, "huh, that's not right."  "What's not right?," I asked. She proceeded to tell me that the report of my Day 21 progesterone test said my level was a 1 and in order to have a viable pregnancy you needed at least a 10.  I asked the nurse what that meant and she told me that  progesterone helps the uterus thicken in anticipation of receiving a fertilized egg. If it’s not thick enough, implantation doesn’t occur.  Could it be that my eggs were getting fertilized but not implanting.  But why wasn't my body, making enough progesterone?  The nurse didn't know the answer to that so I decided to educate myself on what this all meant.  How exactly does a pregnancy happen from the very beginning until that very end with a healthy baby.

Sure enough, it all traced back to my traumatic brain injury (TBI).  When i sustained a TBI, I injured my pituitary gland.  We knew this because while I was in the hospital following my injury, I developed Hyponatremia which is a condition that occurs when the level of sodium in your blood is abnormally low. When I researched it, I learned that, '"in most patients with TBI, hyponatremia is a feature of the syndrome of inappropriate antidiuretic hormone (SIADH) secretion due to pituitary dysfunction after head injury."  OK - so I injured my pituitary gland but how does the pituitary gland affect progesterone.  More researched, taught me that "the formation of the corpus luteum (which produces the majority of progesterone) is triggered by a surge in luteinising hormone production by the pituitary gland and luteinising hormone controls reproductive functioning by stimulating the ovaries to produce progesterone."

My brain injury was causing my fertility problems, I had found my answer.  Could my gynecologist and fertility doctor have figured this out?  Yes, they probably should have noticed the low progesterone level, but the reality of it is, they have hundreds of other patients to care for and this kind of information can be easily be missed.

The lesson I learned from this experience is the importance of knowing your own body and related health issues.  My gynecologist knew I had sustained a TBI because she had also been my doctor prior to my injury, but I never really went into much detail about it with her because I didn't think it was that important for my gynecologist to know.  I had absolutely no idea that the brain injury I had sustained 4 years prior would play a role in my fertility.  Even when I did consider that my injuries could possibly be the cause of the problem, I only focused on my pelvic area.  I had broken my hip and had surgery to repair it, and wondered if somehow that damaged part of my pelvis or uterus.

With the knowledge I learned I asked to be given progesterone after I had my third IUI and not only was I able to get pregnant and maintain the pregnancy but I got double the end result by having twins.

Become your own advocate if you want to get your end result with your medical care.  People may argue that is what doctors are for though.  They've gone through all the years of schooling and training.  They are the ones who are supposed to understand all the science, that is what they are paid for.  But, you are the owner of your body and its health. You ultimately make the decisions on what kind of treatment you get, so why not make an educated decision.

In today's world, it is not hard to find, out information about anything.  Articles, research, reports, videos, information, etc. it is all online at your finger tips.  Unless you have no way of accessing the Internet, there is no reason why you can't learn.  The excuse, I don't understand medicine or science is not a good enough reason not to educate yourself.  I have always found some kind of layman's explanation about the medical conditions I have and the associated health care treatments online.  I can then take that information and discuss it with my physicians to make what I believe is the best decision.  It's called due diligence and when faced with making any kind of major life decision, we all do our due diligence first so why don't we do it for all of our health care decisions?

It is OK to question your physician's advice and if they are the type of doctor that doesn't like their patients to be educated then maybe its time for a new doctor.

Our health care system is run by big pharmaceutical companies who are getting rich off you being sick.  The more drugs you need the richer they become.  I'm not saying medication is bad.  I take 3 types of medication per day, some of them twice a day for my anxiety, depression and sleep apnea syndrome, but I know exactly how that medication is helping me.  I know what chemicals they produce and what exactly those chemicals are doing to my body.  I was the one who went into my neurologist's office and told her what drug I wanted to take for my sleep issue.

For all our veterans who have to deal with the incompetence at the VA go to your appointments prepared.  You wouldn't go into battle unarmed, so don't go into the VA unarmed.  Do your due diligence and go in armed with all of the information you can possibly get.  Tell the doctors exactly the end result you want and how you want to get it.  It doesn't mean you will get everything you ask for but it is harder for health care providers to keep you in the dark when you have that information.

If you have PTSD understand why you have it, not just what caused it.  The blog post I did prior to this one talks about what PTSD is and there are so many articles online that talk about why that anxiety disorder occurs.

Take control about your health care.  Don't leave it up to the Government to decide or the physicians, many of whom are controlled by the drug companies.

It's your body.  It's your health.  It's your life!  Take control!

Yes, I Have A Mental Health Disorder, No That Doesn't Mean I'm Crazy!

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"Mental illness is nothing to be ashamed of, but stigma and bias shame us all." ~ President Bill Clinton

The following is a very basic textbook lesson on anxiety disorders and depressive disorders or depression. All of the information below I obtained through self education. I gathered a lot of my facts from websites such as The National Institute of Mental Health, the International OCD Foundation, Centers for Disease Control and Prevention, The Mayo Clinic, National Alliance on Mental Health as well as some others. The information provided in this blog is for informational purposes only and is not professional medical advice, diagnosis, treatment or care, nor is it intended to be a substitute therefor. Always seek the advice of a physician or other qualified health provider properly licensed to practice medicine or general health care in your jurisdiction concerning any questions you may have regarding any information obtained from this blog and any medical condition you believe may be relevant to you or to someone else. Never disregard professional medical advice or delay in seeking it because of something you have read on this blog. Always consult with your physician or other qualified health care provider before embarking on a new treatment, diet or fitness program. Information obtained in the blog is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment.

Ok - now that we got that out of the way, let's get to the point of this post!!

I am an advocate for many causes and people, including myself, I would not be here today if I didn't advocate for myself. I also advocate for the 350 million people who suffer from depression and the 40 million adults in the US who suffer from some sort of anxiety disorder.

Depressive Disorders & Anxiety Disorders are not the same. Depression is a condition in which a person feels discouraged, sad, hopeless, unmotivated, or disinterested in life in general. For people with anxiety disorders, worry and fear are constant and overwhelming, and can be crippling. They can cause such distress that it interferes with a person's ability to lead a normal life. It is not uncommon, however, for someone with an anxiety disorder to also suffer from depression or vice versa. Nearly one-half of those diagnosed with depression are also diagnosed with an anxiety disorder.

There are several types of anxiety disorders, including panic disorder, social anxiety disorder, specific phobias, post traumatic stress disorder (PTSD), obsessive-compulsive disorder (OCD) and generalized anxiety disorder (GAD).

The exact cause of anxiety disorders is unknown; but as scientists continue their research on mental illness, it is becoming clear that many of these disorders are caused by a combination of factors, including changes in the brain and environmental stress.

Depression or a Depressive Disorder is a type of mood disorder and there are two main categories; major depressive disorder and dysthymia or Chronic Depression. There are also some less common types (Seasonal Affective Disorder (SAD), Psychotic Depression, Postpartum Depression, Premenstrual Dysphoric Disorder (PMDD), 'Situational' Depression, Atypical Depression and manic depression also called BiPolar.

People with depression often experience symptoms similar to those of an anxiety disorder, such as nervousness, irritability, and problems sleeping and concentrating. But each disorder has its own causes and its own emotional and behavioral symptoms.

Depression is caused by a combination of genetic, biological, environmental, and psychological factors.

Depressive illnesses are disorders of the brain. Theories suggest that important neurotransmitters—chemicals that brain cells used to communicate—are out of balance in depression.

Anxiety disorders & Depressive Disorders are not the result of personal weakness, a character flaw, or poor upbringing.

I suffer from both an anxiety and depressive disorder.

I have dysthymia or Chronic Depression. Dysthymia is considered a “milder” form of depression than a major depressive disorder (MDD) because its symptoms usually last much longer than in MDD. However, it can often be the most debilitating of the two diseases. Dysthymia may be intermittent, with patients feeling better for a period of time. Typically, however, these bursts of “normalcy” last no more than two months. Chronic Depression is a highly treatable condition, but left untreated, dysthymia may develop into major depression.

My depression is also a huge anxiety trigger. I get upset and frustrated that I am feeling depressed. I live a very fortunate life, I have a loving family, a home, I can afford the necessities and many luxuries, I am in good health, I live in a great place, etc. So I feel guilty for being depressed. That guilt is what made me realize that I am, for the most part, powerless over my depression. It comes when it wants to come and many times it hits me without any warning. I can’t cure it, the only thing I can do it fight it. I cannot prevent it entirely, even with medication. The medication helps me fight it because it lessens the strength of the depression attack, however, the medication is like a bullet proof vest, it can help but it is not foolproof.

I suffer from two types of anxiety disorders, PTSD and OCD. PTSD develops after a terrifying ordeal that involved physical harm or the threat of physical harm. The person who develops PTSD may have been the one who was harmed, the harm may have happened to a loved one, or the person may have witnessed a harmful event that happened to loved ones or strangers. People with obsessive-compulsive disorder (OCD) feel the need to check things repeatedly, or have certain thoughts or perform routines and rituals over and over. The thoughts and rituals associated with OCD cause distress and get in the way of daily life.

There are a lot of misconceptions with both PTSD and OCD and I will try to better educate you on both.

PTSD was first brought to public attention in relation to war veterans, but it can result from a variety of traumatic incidents, such as mugging, rape, torture, being kidnapped or held captive, child abuse, car accidents, train wrecks, plane crashes, bombings, or natural disasters such as floods or earthquakes.

Scientists are focusing on genes that may play a role in creating fear memories. They include Stathmin, a protein needed to form fear memories, GRP (gastrin-releasing peptide), a signaling chemical in the brain released during emotional events and a version of the 5-HTTLPR gene, which controls levels of serotonin — a brain chemical related to mood-that appears to fuel the fear response.

PTSD symptoms can be grouped into three categories:

1. Re-experiencing symptoms such as Flashbacks, Bad dreams and Frightening thoughts.

2. Avoidance symptoms, including staying away from places, events, or objects that are reminders of the experience, feeling emotionally numb, feeling strong guilt, depression, or worry, losing interest in activities that were enjoyed in the past, and having trouble remembering the dangerous event.

3. Hyperarousal symptoms that include being easily startled, feeling tense or “on edge,” having difficulty sleeping, and/or having angry outbursts.

It’s natural to have some of these symptoms after a dangerous event. Sometimes people have very serious symptoms that go away after a few weeks. This is called acute stress disorder, or ASD. When the symptoms last more than a few weeks and become an ongoing problem, they might be PTSD. Some people with PTSD don’t show any symptoms for weeks or months.

People with OCD have frequent upsetting thoughts that are called obsessions. The term “obsession” is commonly used out of its real context. If you enjoy something to the point where you feel obsessed about it, it does not mean you have OCD. People with OCD try to control their obsession and feel an overwhelming urge to repeat certain rituals or behaviors called compulsions. According to the National Institute of Mental Health, “People with OCD CAN’T control these obsessions and compulsions. Most of the time, the rituals end up controlling them.”

When most people hear the term, OCD, they often think of people who are obsessed with germs or dirt, who have a compulsion to wash their hands over and over again or a person who needs to organize things according to some kind of attribute such as color or size.

But OCD encompasses so much more. For instance, a person who has an obsession with intruders often locks and relocks their doors many times before going to bed. People with OCD may also be preoccupied with order and symmetry as I mentioned above, but it can also entail counting while performing a task where you need to end on a “good,” “right,” or “safe” number.

Some people with OCD need constant reassurance so they will often ask the same questions over and over again in order to receive it. ("are you mad at me?"  "are we ok?"  "did I do something to upset you?" "are you sure?")  

Some people with OCD have the inability to decide whether to keep or to discard things which result in the accumulation of or hoarding unneeded items. Compulsive shopping and clutter can be forms of OCD.

Religious compulsions are another form of OCD and might include a concern with offending God, concern about blasphemy and excessive concern with right/wrong or morality. People with OCD perform their rituals even though doing so interferes with daily life and they find the repetition distressing.

For me, loud noises and crowded places in general trigger my PTSD and OCD. Too much stimulus cause my brain to overload and I get very anxious. Music concerts, clubs, bars, restaurants, sporting events, airports and large, crowded stores seem to be the biggest noise triggers. Even at home with my three loud and rambunctious boys triggers my PTSD. I choose to avoid these places as much as I possibly can but for obvious reasons that is not always possible.

My fear of getting lost is also a trigger for my anxiety. When I am in an unfamiliar place and I do not know where I am going I get very irritable and panicky. So I like to know in advance where I have to be and when I have to be there so I can research it, plan and get as familiar as possible. I also like to give myself plenty of time, especially if I am driving to a place I am unfamiliar with. I am a very punctual person, because of this and most of the time I arrive early so I spend a few extra minutes in my car – thank goodness for the invention of smart phones. Now I can at least check email or Facebook rather than just sit and watch the traffic pass me by.

There are other things that trigger my social anxiety, but they are not as severe and include telephone phobia (why I prefer to text or email), public speaking, meeting new people or being in a situation where I know very few people or no one at all. Most of these triggers result in me being very introverted and to some extent, socially awkward, so my home is where I prefer to be as much as possible.

The OCD symptoms that I often exhibit include needing to end on a specific type of number when performing a task (usually a number ending in 0), constantly asking or needing reassurance ("are you mad at me?"), an inability to decide whether to keep or to discard things which result in accumulation or hoarding of unneeded items, too much clutter and according to my husband, I am a compulsive shopper however, I rarely buy things for myself so if I am a compulsive shopper at least others are benefiting from it more than I am. Letting go of an object for me is a long and painful process which requires discussing it at length in therapy and also compromises that I often make with my very minimalistic husband. 

I know these are obsessions of mine, however, as stated above, I CAN’T control these obsessions and compulsions, they control me. I am, however, trying to understand them more so I can be aware of them when they occur. It would be great if I had a personal psychologist follow me around all day and tell me when my anxieties are doing the talking but I don’t. So that is why I have to be my own advocate and educate myself. I also rely on the people who know me and my disorders, my family and a close friend, to gently point this out to me when I am being more rational.

These are conditions I do not wish on anyone. It doesn’t matter how wealthy you are, how beautiful you are, how fortunate you are or where you live. Depressive and Anxiety Disorders do not discriminate.

For me, I know many of these issues stem from the Traumatic Brain Injury (TBI) that I sustained in 1997. It took over 12 years for me to get a proper diagnosis so I spent a long time wondering what was wrong with me. Now that I am aware that these conditions are mostly due to my TBI, I am able to manage them better. I am also my own advocate.  If I didn't bring these disorders up to my physicians, I don't think I would have ever have been evaluated let alone diagnosed. I am constantly reading up on the latest research and I question my physicians and health care providers. I guess you can say I have an OCD about my mental health.

It's a very lonely existence because those who do not suffer from depression and anxiety really have no idea what it is like. My family doesn’t and the very few close friends that I still have don’t understand. Sometimes when I meet new people I want to introduce myself like, “I’m Amy and I have a TBI, PTSD and OCD so please do not take offense to anything inappropriate that I may say and please have a little empathy about my anxieties. Also, let me apologize in advance because if you do still decide that you want to be my friend, I will surely do or say something that will upset you. Please give me, many more than just a second chance, I will need hundreds of chances.”

I am very thankful that my family and the few friends that I do still have, give me the support that I need to live with these disorders. I know it is very hard on them too, and it would be much easier for them to run away from me. There have been many people in my life who have but, I no longer fault them for it because I now understand the burden, emotional drain and the frustrations that are my baggage.

I will do another post about some of the things that friends and loved ones can do to help support those of who suffer from depression and anxiety. I can only speak from my own experience, however many others have expressed the same desires.

If you are suffering from any of the above symptoms and think you may have an anxiety or depressive disorder please see a licensed medical professional. You are not alone and just because you may have a mental illness, that doesn’t mean you are crazy. Be strong, be courageous and be brave and get the help you need and don't hesitate to reach out to me.  

TRUST - My Biggest Disability

So you know that I got an AWD spot through Achilles International - my absolute favorite foundation that helps disabled people participate in mainstream athletics. Achilles gave me a spot with the Freedom Team of Wounded Veterans when I did the San Diego Rock n Roll marathon last year. Even though I am not a veteran, everyone on the team welcomed me with open arms and that was my first ever experience with Achilles.

So I was given a spot on Team Achilles for the 2015 TCS NYC Marathon. Most people who don't know me and my story will often look at me and say "what disability." I got it from Ironman when I went to pick up my race packet for the 2013 Ironman 70.3 in Augusta, GA. When I went up to pick up my race packet at the expo, the Ironman representative sitting behind the table couldn't seem to find it among my age group of women racers. I told him he was looking in the wrong spot, that I was a PC Athlete (physically challenged). He looked me up and down and snidely said, "you don't look physically challenged to me." I took it as a compliment rather than a question.  I smiled, took the bag he found that contained my race information turned around and walked away. 

So back to NYC and why I AM considered a disabled athlete or as I prefer to call it a “special-abled." I suffered a severe Traumatic Brain Injury (TBI) back in 1997. Brain injuries are invisible, which is part of the frustration those of us who have them feel because sighted people can only understand what they can see to be true. What people can’t see requires faith and faith comes in time, usually after some sort of an education on what it is they cannot actually see.  The bible teaches us to live by faith and not by sight. 2 Corinthians 4:18 says, "So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."  But because we often live in a very impatient world, people will only believe what they see. 

So, if you read up on TBI, you will see that with it often comes a lot of issues involving both the central and peripheral nervous systems. Our brains control everything, they are really who we are. Our bodies are just a shell.

In addition to the brain damage I sustained, I also acquired a lot of physical injuries. My shell broke in many, many pieces, but, the good news was that they were able to find all the broken pieces and glue me back together again.

I also damaged a lot of nerves. Most people can only recognize the damage that occurred to my facial nerves leaving me with facial paralysis but, I sustained some pretty bad nerve damage to the entire right side of my body. I have what is called chronic paresthesia – you can look up what exactly that is online, but in a nutshell, it is that feeling you get in your extremities when they “fall asleep.” That pin and needles, prickly sensation. If its your foot or hand you almost lose all sensation in it except for that prickly sensation. It feels completely numb and heavy – like dead weight. It's hard and often impossible to walk on a foot that has fallen asleep.  The same is true for a hand that has fallen asleep, grasping a hold of something in your hand with control is nearly impossible.

I have that feeling on the right side of my body all the time. My right foot and right hand have been sound asleep for over 18 years. That is why I had to relearn how to walk again. That is why I basically had to and still have to at times, relearn how to do almost everything that involves my extremities because I am right side dominant. 

 It's weird because my muscles are getting bigger from working out, but they have practically no strength.  I played competitive volleyball in high school and college. I had a wicked fast overhand serve. Now, I’m lucky if I can hit the ball 10 feet when I serve.  It’s super frustrating because I can’t do a push up or a pullup – not correctly anyway – I have to cheat, I mean really cheat.

Things like opening jars can be tough, turning keys to open doors, holding a pen and writing or typing takes twice as much energy as before, so my hand just gets tired quickly. I frequently knock things over with my hand because of a lack of control.  I am told that my peripheral vision has something to do with that as well - another issue caused my damage to my brain.

In regards to my foot – I had to relearn how to walk and that became more of a trust issue. Because I cannot feel the ground too well, I have to trust that my brain is sending the correct signals to my foot which is to support my body as it moves forward.

I had to relearn how to run again when I decided I wanted to try to complete a half marathon.  Since I never even gave running a second thought, I didn’t even try it for over 12 years post trauma. There is also a big difference between trusting your foot to be there when you walk vs when you run.  Since you are traveling at a faster speed when you run, you mentally require more assurance that you will be safe. In order to get that extra assurance I often slam my right foot down really hard on the pavement so that I can feel it more and be more confident that it is really there.  That has led to stress fractures and a condition called Osteochondritis dissecans in my right talus. In order to prevent more injuries, I have to have more trust. So far two surgeries within 3 years have proved how much trust I really have.

Jumping as my trainer, Jake, can tell you is kind of comical with me. I can’t feel the force of my foot, leaving the ground so there is zero trust there. Box jumps are just not my thing. And it's not really a hop that I do – it’s a cross between a hop and jump – we’ll just call it a jop.

Then there was learning how to ride a bicycle with a sleeping foot and that just happened 3 years ago. Add to that fact that I can’t feel myself turning the pedal with my foot, with not really feeling that my hand is holding on to the handle bars securely and that my equilibrium is way off because of the damage to my inner ear, which led to hearing loss a plus my balance is off because of the brain damage and diplopia and you now can understand why I am deathly afraid of riding my bike (but I did it – 56 miles twice!)

So my ENTIRE life now revolves around TRUST. 

Physically, I have to trust my brain that it is sending the proper signals to my organs and other body parts. Then, I have to trust that my body parts have received those signals and know what they are now supposed to do and that they will have the strength and coordination it takes to do it.

Mentally, I need to have enough trust in myself that I am making the correct decisions, even though I now live with a mind that has no control over impulsivity which often leads to recklessness.

I have to trust my friends that they will always have my back, be there when I need them as well as catch me if I fall.

I even need to trust perfect strangers to some extent that they are not going to harm me even after I have been harmed before.

It all comes down to that one word, TRUST. Something that I have so little.

I do put a lot of trust in my body and for the most part it has been very good to me so I treat it well, keep it healthy and try to take the very best care of it that I can.

My family says I am introverted because I rarely like to leave my home – especially for social occasions. I do have a lot of Facebook friends because they are safe for the most part.  I am able to keep my distance from those friends I do not regularly see and therefore I do not develop very strong emotional ties to them. You may be one of them if you are reading this. If I tell you I love you, I really do mean it, but I probably don’t trust you. 

I have given out bits and pieces of what little trust I have left to certain people who have earned it, but there have been those who have taken advantage of and lost it.

Don’t take it personally, if I don't present you with my trust on a silver platter, it's just something that I am really not capable of doing right now. But if there ever comes a time where I am able to give you even just a tiny little bit you better hold onto it as tight as possible because if you lose it, I really have no more to give to you.

The definition of the word disability is “the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental, or some combination of these. I have a lot of physical challenges and special-abilities in my life, but when it comes to what my disability is, you can sum it up with one word – Trust.

2015 TCS Marathon - Part One

The days and weeks leading up to the 2015 NYC Marathon were some of the most difficult not only physically, but mentally that I have felt in a long time.  At times I felt as if my life was spinning out of control – well, not really my life per se but my mind.  My emotional roller coaster was on constant repeat and I just wanted to get off the ride.

I guess you can say the ride started last spring when I finally hit rock bottom because of my sleep issues.  After 18+ years suffering from chronic fatigue I was done.  I was done fighting.   I was ready to give up, throw in the towel, wave the white flag, lay down for the count.  I wanted help, I needed help.  Both physically and emotionally and the only thing that was going to provide me with the help I needed was medication.

I really wasn’t very eager to add yet another pill to my pharmaceutical candy jar, but everything I had tried that didn’t involve making the drug companies richer wasn’t working.  I had already spent hundreds of thousands of dollars on every type of therapy you can imagine.  Psychotherapy, hypnotherapy, cognitive therapy, exercise therapy, life management skills therapy, cranial sacral therapy, physical therapy, and massage therapy. 

I tried acupuncture, chiropractic, Egoscue, TheAlexander Technique, yoga, Pilates, meditating and praying.  Eating a 100% plant-based diet helped me to lose weight and get healthy but it didn’t help with the fatigue.  B12 didn’t help.  Vitamin D didn’t help.  Magnesium didn’t help.  Sleeping all day didn’t help.  The only thing that did help was Hyperbaric OxygenTherapy but that was now beyond my financial means since insurance refused to cover it.  

My marriage was suffering, my kids were suffering, my overall health and well-being were suffering.  So I finally turned to my neurologist for help which started well over a yearlong battle with my insurance company to approve medication intervention that would allow me stay awake during the day.

I was forced to take multiple naps per day all the while trying to maintain the active life that helped me manage the Traumatic Brain Injury (TBI) side effects that now plagued me.  Running, strength training, etc.  That magic pill that helped me deal with my depression, mood swings and post traumatic stress disorder.  I tried to force myself to get out of bed each day and do some sort of physical activity, but it was hard and the chronic fatigue was winning.  Still, I registered to do something I have always dreamed of doing, even before my incident, the New York City Marathon. 

Thanks to an organization called Achilles International, I was given an Athlete With Disabilities (AWD) slot to “run” in the TCS NYC Marathon on November 1, 2015.  I was elated.  I was finally going to participate in the biggest event of my life.  Most people consider the Boston Marathon the cream of the crop, but to me, it doesn’t get any better than the NYC Marathon.  NYC is my Boston.  I had finally made it to the top, but the celebration was short lived when I couldn’t even find the energy to lace-up my sneakers let alone hit the pavement with them.

The chronic fatigue that had plagued me for 18 years was now providing my depression with the rocket fuel it needed to take full control of my life.  My excitement about the marathon quickly turned to stress and anxiety which led to daily panic attacks.  The panic attacks made me hide from everyone and everything.  I didn’t want to run or exercise.  I didn’t want to see anyone, including my family members.  I didn’t want to talk with anyone.  I didn’t want to go anywhere.  I was miserable.

In September, after many doctor’s visits, tests, crying, screaming, nervous breakdowns, and self pity parties, I finally got the approval from my insurance company for the medication I needed.  My doctor prescribed me the drug Nuvigil and my chronic fatigue was now a thing of the past, at least temporarily.  It was time to get serious about this marathon – the only problem was that I only had a little over a month to train for it.

Relying on pure determination, I set out to train as best as I could within the short amount of time I had.  I had been working out with my trainer/coach, Jacob “Jake” Nelson, and physically, I felt as if I had the strength I needed to complete it  – it was the endurance capability I was worried about.  Jake is highly educated and extremely knowledgeable when it comes to exercise science, kinesiology, biology and anything and everything to do with anatomy.  He is the only one I  completely trust when it comes to training because he fully understands all of my injuries.  Jake said he had no doubt that I would finish the race and that was all I needed to hear to feel confident.  All I wanted to do was finish without injuring myself any further and before it was time to catch my plane back to the Bay Area the following day.

I trained with Jake a few times a week and did long runs on the other days.  My long runs were proving to be some of the best runs of my life.  I managed to get my heart rate down to 140 bpm while running which provided me with a comfortable pace in which to go long distances. 

Two weeks before the race I was given a last minute opportunity to run the Nike Women’s Half Marathon in San Francisco and I took it. The course was extremely difficult, more hills than in the previous years I had participated in this half marathon and it turned out to be a beautiful sunny and warm day, not the best racing weather in my book. 

The temperature climbed pretty high as soon as the sun rose and the absence of any clouds in the sky made the sun’s heat penetrating.  I could not get my heart rate below 155 bpm and the hills were taking a toll on my legs.  The first five miles were a real struggle and I was getting worried.  I finally gave up on my heart rate and focused on just being able to climb to the top of each hill without the need of an oxygen tank.  It was a tough race, and I was completely spent when I crossed that finish line at 13.1 miles.  In two weeks’ time I had to do double that amount – 26.2 miles – I was in big trouble.

This was a huge blow to my confidence level and the anxiety and panic attacks returned.  On top of this, I started experiencing the most excruciating back pain.  I had no idea where this was coming from as back pain wasn’t something I had experienced in the past.  It was debilitating pain and it prevented me from training at 100%.

Jake and I had to switch the focus of my training.  We had been performing intervals that kept my heart rate high in order to prepare my body to go a long distance at its target of 140 bpm.  Now we had to worry about the back pain I was experiencing.  We eased up on the intensity of the workouts and incorporated more stretching exercises to try to get my back muscles to relax.  Still, I was getting no relief.

The Nuvigil was now in full swing and I had gone two full weeks without having to take any naps during the day.  I was alert, focused and full of energy, but my back was killing me.  In order not to develop a tolerance to this medication, it is advised to do what they call cycling in order to keep your brain guessing as to when the medication will be in your system.  So for instance, take it for 2 weeks, and then take 1 week off.  Then take it for 1 week and take 2 weeks off.  Switching it up like that is what I was told would help keep the medication working at its best.  So I came to the 1 week where I was to stop taking it and low and behold, after 2 days off the medication, my back pain disappeared.

This prompted me to do a little more research on the side effects that other Nuvigil users reported.  

No where on the drug’s official website does it list back pain as a possible side effect so I had to do some digging.   Sure enough, I found a group of people who posted complaints in an online forum of Nuvigil users about severe joint and back pain when taking the drug.  I couldn’t believe this was happening.  I had finally found a treatment to help with my daytime sleepiness and provide me with the necessary energy I needed to be active only to develop back pain so severe that even just walking was a struggle.  I had just opened Pandora’s Box and all my depression, anxiety and panic attacks in my world were now unleashed.

I started to do something I hadn’t done since I crossed the finish line at my first half marathon back in 2010 – I started to doubt my ability to successfully complete the marathon.  

The TBI Fire

Writing my book has been one big therapy session.  The more I write, the more I see how TBI and PTSD are affecting my everyday life.  I used to think it was just the memory issues, the clumsiness, the fatigue and of course - the facial paralysis.  But it is so much more.

For example, something just happened this morning that triggered what I like to call a TBI Fire.  Here is what happened....

I sent an email to a friend of mine and in the email, I asked him a question about something that is very important to me and his answer was short and what I perceived was rather flippant.

Now, my mistake number 1, is that I read it during a stressful time of the day.  Early mornings on a school day.  Getting three boys out of bed, fed and to the bus stop on time is hard enough - add to the mix that one is special needs and who fights non-stop with one of his older brothers and you have the perfect storm.

So I read his emailed response and that triggered a small spark which lit a very tiny little fire in my brain.  Very small, even smaller than a campfire, but nonetheless, the flame was lit.

Then I proceed to have my usual 1.5 hours of dealing with three boys, two of whom are fighting with each other in addition to not doing what I have asked them to do (get dressed, eat breakfast, brush your teeth and go catch the bus before you miss it).  Believe me, it may sound easy, but it is not.  I will do another post about the tumultuous school day mornings that occur at my house later and to all the other mom's out there, I promise you, you do not go through the same thing.

So, in regards to my little fire metaphor, it's grown a little and it's now a decent sized campfire.  The stress of my mornings with my boys, well, its kind of like they are fanning the fire to make it bigger.  Like throwing a lot of leaves and sticks and kindling to really make it a big fire.  

Now, if I was able to - I would simply go to my happy place, a place that is peaceful, quiet and where I could escape the fire until it burns itself out, but I can't.  I can't because those three boys are my responsibility and my responsibility is to get them to school on time, which entails getting them out of bed, dressed, fed and to the bus stop.  

Do you see where I am going with this?

So here we had the small campfire that was lit and some boys who are fanning and throwing things at it making it bigger and bigger and bigger and a mom who is in dire need of a firefighter with a fire truck to put the fire out, but all she can find is maybe a garden hose which doesn't have much pressure, at least not enough to do the job.  

For all intents and purposes - this garden hose is the medication I have been taking to help regulate the chemicals in my brain to keep me balanced.

So the garden hose could have put out the small campfire, even if it stayed lit for a while, but, it has zero effect on the fire that is now raging out of control.  And those boys who were making this fire grow - well, they (barely) caught the last bus and got the heck out of dodge and now mom is left here battling what has become a wildfire and because she is not a firefighter, she has absolutely no idea what to do and she ends up catching on fire and exploding because what nobody seems to realize and understand is that this mom had dynamite inside of her.  Yes, 18 years ago, she got caught by some terrorists and they sewed dynamite inside of her.  This dynamite isn't the normal TNT kind, it's a particular one called TBI.  

BOOM!!!  My explosion is a rage filled, out-of-control, response and the fire has spread and more people end-up getting hurt.

That is what living with a TBI is like.  It's that fire and you need to avoid the triggers that spark it because it is hard to put out and people who say, that this is just an anger management problem don't understand that it is so much more.  It is an anger management problem that we didn't have before the TBI and that conventional ways of controlling it don't work for us because our brains are now different.  Your brain is a grape and ours is now a raisin and you can't make a raisin turn back into a grape, no matter what you do.

Now - I am proud to say that my TBI dynamite didn't explode.  The fuse was lit, but I was able to put it out and the only reason why I was able to do this is because I am writing this book and it was as if for a brief second I was able to see into the future so I stopped the bad outcome from happening. I literally had the email reply written and I was able to stop myself from pushing send, that is how close it came.

Not every person who has a TBI is able to do that.  As a matter of fact, most of the time I can't do this either, it is beyond my power.  So therein lies the question, what can be done to stop us TBI fighters from pushing that button?  Medication?  Medication is like one of those nozzles that you can put on the end of the garden hose and has different settings to control how the water comes out.  The one that spins and you can choose shower, jet, angle, soak, mist, center, etc.  Sometimes you find the right setting that can put out that particular fire and sometimes not.

I know what worked for me in the past and that was oxygen.  Ironically, something that is one of the main ingredients of a fire is the one thing that can help me keep it under control.

  When I underwent hyperbaric oxygen therapy (HBOT) I was able to control that campfire and it was easy.  I didn't have to have to mess with all the settings in the nozzle.  I found that one setting that controlled that fire.  But of course the Government that is controlled by the pharmaceutical companies are preventing me from getting the oxygen I need because they make a lot more money by selling those nozzles.

If only the FDA would approve HBOT as a viable way to manage the side effects that come with a TBI, which would allow me to afford it by requiring health insurance companies to cover it, a lot less people would lose everything they had in a fire that could have been prevented in the first place.

  

Alcohol Use After Traumatic Brain Injury

Quite a lot of people have emailed me since my crowdfunding campaign went live and news of my book has been made public.  They are all people who either have a TBI or are caregivers of someone who has a TBI.  About 95% of the adult TBI survivors who have emailed me have had an alcohol problem post TBI and I want to share with you why I believe that is, at least why it was in my case.

Living with a TBI is scary.  It is scary because your brain cannot process too much stimuli.  So crowds, noisy places, bright lights and confined spaces cause severe anxiety and panic.

When you are social what do you do?  You go out to restaurants, bars, clubs, etc.  Places that are noisy and often have loud music.  Places that sometimes have a lot of blinking lights like at a dance club.  Small, confined places where a lot of people who are strangers go.  I mean, what is the point of trying to be social if you go to an unpopular place where hardly anyone else goes.  Even if a venue is considered big, such as a large restaurant or night club, they are most likely enclosed spaces with one main entrance and exit.  Walking into that situation for someone with a TBI is frightening and having to stay there for a long period of time is enough to cause a major panic attack.

For me, my heart pounds, I sweat profusely and I feel like I cannot breathe.  I also fear that I am going to lose the people I am with.  Those familiar people are my life jacket and I am drowning.

When I moved back to San Francisco after I finished my rehabilitation in New York, and started working again, I started having a very social life.  It was the dot com era when everyone was making decent money, working hard and partying harder.  I was a single female in my late 20’s and I desperately wanted to feel normal again.  

For all intent and purposes, I was completely healed; there was nothing wrong with me.  Maybe I had a limp, some scars and facial palsy but I could walk, I could talk, I was able to take care of myself.  I was healed, or so I thought.

I started working at an up and coming internet technology company where the mean employee age was probably 33.  The company was full of young, single and adventurous employees.  Company sponsored happy hours occurred several times a week.  

I really liked the people I worked with; they were friendly, smart and really funny.  I wanted to fit in so badly.  I didn't have many friends left in San Francisco because most of them either forgot about me after I got out of the hospital and relocated to NY to do my rehabilitation or, because they weren't true friends to begin with.  So in order to make new friends I became social, again.  I joined the crew from work and started going to the happy hours.

The only way that I could control my anxiety and the panic of having to be in an enclosed, noisy place with so many people was to drink alcohol.  The alcohol calmed me down, put me at ease.  Red wine was my drink of choice and the more social I became, the more wine I drank and the more wine I drank; the higher my tolerance level went up, requiring me to drink more in order to feel calm and relaxed.  So you can see the pattern.  I would have been a prime target for Bill Cosby.

I quit drinking 3 years ago.  Now, I rarely go out socially.  I NEVER go out to bars or clubs.  I only go out to restaurants that I am familiar with, I avoid parties where I will not know the majority of the people, even with my husband, Tony, by my side.  It causes issues in my marriage because Tony is often left having to go out by himself because I just can't go.

Even when I do a triathlon or marathon I get panic attacks.  The only thing that saves me is the fact that I am outside.  I also always stay towards the perimeter of the crowds where I can easily escape if I need to.  

During the Ironman 70.3 in Augusta in both 2013 and 2014, I had several panic attacks because the number of participants.  During the swim portion, people were swimming so close to me, kicking and punching me in order to pass me.  A few even swam right over me.  It was every man and woman for themselves.  The last time I did that swim, I had to swim over to a kayaker and hold onto the kayak while I tried to calm myself down from my panic attack.  It took me 10 minutes to calm down and get the nerve up to continue.  I even had to unzip my wetsuit because I couldn't breathe; it felt as if it was crushing my chest.  I never want to do that swim ever again.

If I have to go out now, to a place that causes me any anxiety, I have to prepare myself for it days in advance.  Some places I can only stay for several minutes.  Sometimes I just need to go outside, catch my breath and regain my composure.  Even in some stores I cannot stay more than 10 minutes.  Old Navy is one of them.  Something about the layout, the displays, the size and the crowds frighten me.  Costco is another one.  If I have to go to Costco, I will only go on a weekday when the crowds are less.

I am antisocial and an introvert.  Home is safe.  Home is familiar.  I know everyone in my home.  I like my home.  It has a lot of windows, I can see the mountains, I have a secure backyard where I spend a great deal of time.  I can breathe in my home.  Social media is how I make friends now.  It's sad, but most of my best friends live across the country, some I see only once a year if I am lucky.

The fear I feel is very real.  It is the kind of fear that cause people to commit suicide.  The fear makes me feel as if I am being buried alive.  If you knew you were going to die a slow, painful and agonizing death and there was zero chance of surviving, I mean it would take the miracle of all miracles to save you, however, you are given the opportunity to end your life quickly and painlessly, which would you choose?  That is what goes through the mind of someone who contemplates suicide.  So when you question how anyone can take their own life, I want you to keep that in mind.  No amount of money, fame, or physical beauty in the world can end your slow suffering.

That is the invisible wound that is called Traumatic BrainInjury (TBI) and we need to find a way to help those who are suffering from it!  I hope by sharing my struggles and how I am able to manage my TBI, I will be able to save even one life.  I want to be that miracle of all miracles. 

If you know someone who is suffering from a TBI, pick-up the phone, send an email or a text and just let them know that you love them.  Love is a powerful drug, share it.