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.

  

The 2015 New York City Marathon

I have been invited to participate in the New York City Marathon with Achilles International.  Achilles is an amazing organization that was started in 1983 to bring hope, inspiration and the joys of achievement to people with disabilities through sports.  

I really can do an entire blog post on just how much I appreciate and support Achilles for everything they do not only for me, but for the disabled community and I will but, I would like to use this post to talk about what the NYC Marathon (NYCM) means to me and how I am preparing to accomplish this goal of completing it.

Completing a marathon to me always seemed impossible, even before I suffered a TBI and became permanently injured.  I grew up in Port Washington, NY so really the NYCM was the hardest endurance event in the world as far as I was concerned.  I knew nothing about Ironman Triathlons or Ultramarathons, all I knew was the NYCM.  I could only dream of what it must feel like to cross that finish line and accomplish something so physically taxing.

Even as I sit here, having already completed 4 marathons, I still cannot believe that I will be participating in the 2015 NYCM on November 1st.  NYCM is my Boston.  It doesn't get any higher on the marathon ladder for me.

I don't just want to finish the NYCM, I also want it to be my best marathon performance.  So I figured I would train the hardest for it.  The problem with that, however, is that I haven't done any endurance training since October 2014 - almost an entire year of just sitting on my butt.

In 2014, I completed more endurance events than any other year since I had started racing.  Two full marathons, two half marathons and an Ironman 70.3 triathlon.  I was burnt out of training and participating in events.  Plus I wanted some time off to work on the book.

Since experiencing my TBI over 18 years ago, I have dealt with chronic fatigue.   My brain gets overtired and basically shuts down, forcing me to take at least one nap a day in order to give my brain a break and recharge.  The fatigue, however, has significantly gotten worse over the years and I know it is in part because not only have I gotten older, but I have also increased my responsibility load by having 3 children.  Add to that mix that one of my kids is special needs and you have a situation that would make any non TBI parent exhausted.

But, it has gotten pretty bad and my brain is not functioning well at all.  Not only am I always tired, but I have almost no memory capabilities, I cannot multi-task at all and most days I am struggling just to make it to the end of the day.  So I finally decided to seek some medical help from my neurologist who had suggested over a year ago that I start medication to help me function normally.

It has been a nightmare trying to get the medication I need because of my insurance company and some very unreliable and uncaring medical professionals but again, that is another post all in itself.  So what does all of this have to do with the NYCM.  Well, here I am in the second week of August and I still have not gone on a run since October of 2014.  How can I expect not only to have my best marathon performance, but to even accomplish a 26.2 mile run without proper training.

So last month I rehired my trainer / and strength coach, Jacob (Jake) Nelson, who helped me train for my first Ironman 70.3 triathlon, my first marathon, who helped me get back to running after knee surgery and who basically helped get me get in the best shape of my entire adult life back in 2012-2013.  

Jake is a fitness guru.  I hate using that word, guru, because it is so overused to describe even average people, but I don't know any other word that truly fits.  I have never met anyone so incredibly knowledgeable and competent when it comes to physical fitness, anatomy and strength and endurance training than Jake.  I really cannot say enough good things about him.  He is my fitness God and the only one I know who could help me get ready for the NYCM in such a short time.

So for the past month I have been training with Jake.  I am feeling somewhat better, even though I still have not received the medication that I need.  I am getting stronger, however.  I have not gone out for a run yet, but that is more because of life getting in the way of that, but training with Jake is no walk in the park.  

Jake pushes me until I physically cannot do one more rep of whatever exercise I am doing.  He doesn't call it "until failure" when he wants you to perform an exercise until you physically can no longer do one more rep, he calls it "until ultimate success."  If that means until you puke then so be it.  I am proud to say that so far he has never made me puke but I know that is because he doesn't want me to - not yet at least.  If I ever do train for a full Ironman he will probably incorporate some puke training as well.  

So this is the start of my NYCM training blog posts.  I hope to get some videos of some of my training so you can see the exercises that Jake has me doing.  I am going to plan on going out for a three hour run this Friday after I drop Anthony off at school.  I just have to somehow remember to make sure all refrigerator and freezer doors are properly closed before I go to bed on Thursday night so that life doesn't get in the way of my run again!

The Winning Ticket

For the past 2 weeks Ant has been saying that he wants to go to Safeway and use his money. Whenever I asked what he wanted to buy he would say a "blue one shot." When I asked him what that was he would just smile and laugh.  That is what living with Ant is like. He doesn't know how to describe things.  He has a name or label for things and that is about it.

So I figured a blue one shot was some kind of candy. Whenever we would go into Safeway he would get upset that he forgot to bring his money.  I would say show me what you want and I will buy it for you and he would say "no, I have to use MY money," and he refused to show me what it was that he wanted.

Today I took Ant to a couple of estate sales and I told him to take his money in case he saw something he wanted to buy. On the way home, we stopped at Safeway and he was so excited because he finally had his money with him. Ant danced and skipped around the store waving his $5 in the air.  I kept asking him what he wanted to buy and he just kept repeating a "blue one shot."  When I asked "where is it?"  His reply was "there," but he wouldn't point at anything.  When I asked, "where there?" he would just start to laugh and skip off waving his $5.

We finally got in-line to pay for our groceries and Ant exclaimed "my blue one shot!"  I asked him where and he points to the lottery vending machine at the end of the checkout aisle and sure enough, right there on the machine was a big button all lit up that said "ONE SHOT."

The vending machine was filled with about a 15 different kinds of lottery scratcher tickets, but there was one for $5 and it was blue. Ant put his $5 into the machine and pushed the big one shot button and then pushed the button for the blue scratcher.  The machine spit out a big blue ticket into the receptacle and Ant put his hand in and grabbed the ticket and yelled "I won!" He skipped the entire way to the car waving his blue ticket it in the air.  When we got to the car I asked him what he won and he said "money." 

We have since returned home and Ant has no interest in scratching off the ticket to see if he actually did win.  He thinks that just because the machine gave him the ticket means he won. I asked Ant what he wants to do with his money and he said buy stuffed animals. 

So here I sit at the kitchen table, staring at this scratcher wondering if he knows something that we don't? Is this a winning ticket? Or maybe we are all winners regardless if the ticket is a money winner because just the fact that we even got a ticket means we already won. I guess we will have to wait until Ant wants to scratch it to see if we won any money, however, even if it isn't a money winner I will tell him that he won $20 and take him to CVS so he can buy stuffed animals because I sure won when God gave him to me!

My Special Needs Boy - The Antman

In addition to being a TBI survivor and struggling daily with my mental and physical disabilities, I also have a special needs son who has a cognitive disability referred to as Intellectually Disabled or ID.

It's hard to describe Anthony's disability.  There really is no concrete diagnosis.  He is not on the autism spectrum, he has no chromosomal aberrations, and he did not suffer any head trauma or ingest any toxic substance that would have caused this birth defect.

Anthony has been through a myriad of medical tests, including an MRI, EEG, and a complete DNA markup.  Absolutely every test came back as 100% normal.  He has what they consider to be a non-syndromic intellectual disability and only 1-3% of the population is like this.

Anthony has an extremely low IQ.  Anthony is now 8 years old, however cognitively he is like a 2 year old.  He is potty trained and was able to be at a normal developmental age.  Anthony understands technology.  He can use a computer, iPad, iPhone, Playstation 3, and many other forms of technology.  Anthony can read really well, but he does not understand a lot of the words that he reads.  He can also do simple addition and can count well above 100.  Anthony can also go to the fridge, take out something to drink and pour it in a glass by himself.  Anthony can feed himself, get himself a snack, take a shower by himself (although I still help to make sure he washes properly) and do other simple health care tasks such as that so he is considered to have a moderate ID.

Socially, Anthony is very shy.  It takes him a long time to warm-up to people and be himself.  He knows he is different and it upsets him when other children ask him "what's wrong with you?"  Anthony desperately wants to be seen as a normal 8 year old boy and insists on doing everything other children do, even if it is something he struggles with.

Up until now Anthony has been mainstreamed at school.  The school district and his special education instructors are recommending that he be placed in a special day class for next year's school year.  I am on the fence about that because I know it will upset him to be removed from the school he loves and the kids he knows and loves.  Plus, he has been doing so well at his current school with the services he has been receiving.  It is not that the other school and class will not give him an adequate education, it is mainly that I am afraid removing him from the general population will prohibit his social growth.  The world is not a special day class and Anthony needs to find his place in society in order to survive.

Home life is very challenging with Anthony.  He wants to do everything his 11 year old twin brothers do, but doesn't understand why he cannot.  He has temper tantrums of a 2 year old when he doesn't get what he wants or he gets frustrated.  Luckily, those tantrums are predominantly saved for the home, Anthony has the social understanding to know that kind of behavior is not appropriate for elsewhere, especially at school so there are no behavioral problems at school.

The easiest way for me to describe Anthony is to say he is exactly like Forrest Gump.  He even has a Jenny just like Forrest had in the movie, although her name is Carly and she is just the sweetest girl.  It pains me that he may not be able to go to school with her next year.

So that is my Anthony, who we often call Ant or Antman.  I know God sent him down to me for a reason and I am blessed to have a special child just like him. Everyday has its specific challenges with the Antman but we manage and I can honestly say that his unconditional love is worth every single one of them.

If you are a mother of a special angel, please feel free to reach out to me and share your struggles, your obstacles, your successes, failures, advice, and frustrations.  We special needs mom's need a special place to be open and honest with our feelings and emotions.  This is my place but my door is always open for company.

-A

What to do with all of those Race Bibs!

I save all of my bibs from my races.  I never really knew what to do with them so they just got shoved into a folder in my file cabinet.  Six years of bibs in that folder.  I've seen so many cool ideas on Pinterest with what to do with race bibs.  The problem is that I don't really have a room in my home to display them.  Our home is decorated like a Mexican Hacienda and putting up a frame of bibs just doesn't go with the whole Mexican theme.   I also haven't been displaying my race medals.  They have just been hanging on the corner of the full length mirror outside of my bedroom closet.  So, I decided to incorporate both my bibs and medals into one project and I just love the finished product.

Bib & Medal Display

Instructions

This was super easy to make.  I got pre-cut wooden letters at a Jo-Ann Fabric and Craft store.

I got all my race bibs and decided which ones I wanted to use.  I made sure to remove all safety pins and tracking devices from the backs.

Using a sponge brush, I glued the bibs onto the front of the wooden letters using Mod Podge.  I didn't worry about the sides of the letters just yet.  I had to trim some of the bibs so I could wrap them around the sides, but the glue was not holding them securely to the sides of the letters so I just did the front first.

Once I got all the bibs I wanted to use glued to the front of the letters, I used a hot glue gun to secure the bibs to the sides and continued to wrap the bibs to the back.  I was able to secure the bibs to the backs of the letters with the Mod Podge and some packing tape.  I applied a coat of Royal Coat Decoupage Finish to the front and sides of the letters and left them to dry overnight.

The next morning I secured  3M Command™ Damage Free, Clear Utensil Hooks to the letters using the hot glue gun again.  The tape that comes with the hooks was not strong enough to hold the medals which is why I used the glue gun.

Then all you need to do is hang the letters on the wall and hang your medals on the hooks.  To secure the letters to the wall I secured some ribbon to the back of the letters using the glue gun again.  I made sure to pre-cut three pieces of ribbon the same length before gluing them.

Using thumb tacks I secured the letters to the wall by putting a tack through the center of the ribbon at the top.  I hung these on the wall in the hallway right outside my bedroom so they are displayed nicely without clashing with my Mexican decor.  I've decided to actually hang up my race photos in the hallway as well, so every time I walk to my bedroom now I will be able to see my accomplishments.