What Happened With NaNoWriMo?

It's December now, which means that NaNoWriMo finished.

Unfortunately, for the second year in a row, NaNo didn't work for me, but then I decided to test a theory, to try something different.

When I signed up for NaNoWriMo this year, I knew it was going to be a struggle. I started a new job on November 5 as a police communications dispatcher trainee. While it has been interesting and something I'm enjoying, it's been harder than I ever imagined. There's a lot of work involved, but honestly, I couldn't be happier. The few times of stress and tears have been worth it and it will be worth it in the end. I already did mention in a previous post that during the first weekend of NaNoWriMo, I was involved in doing shows for a community theatre production in my neighborhood.

It soon became obvious that NaNoWriMo was going to be a failure. My job has needed my full attention. However, I decided to keep doing NaNoWriMo, as if I was actually writing. I updated my word count every day, as if I wrote x amount of words each day. In theory, I won NaNo, even though I wasn't actually writing a novel/story, while updating the word count with a random amount each day.

The conclusion to all of this is that I will be partaking in NaNoWriMo next year with a better plan, as my traineeship will be over and I'll have a set schedule by then.

I extend my congratulations to anyone who succeeded in doing NaNoWriMo the write, err right, way (see what I did there).

Happy Writing!

~Meg~

2018 NaNoWriMo Update #1

Just stopping in to post a quick update on how NaNoWriMo is going this year so far.

Well, I just started a new job last Monday, which involves training for nine weeks. That being said, I haven't been able to write as much as I would like to be, but am and will be taking advantage of off days, like weekends and off days. I hope to catch up somewhat tomorrow as it's my day off to commemorate Veteran's Day. Veteran's Day is today, however, the government celebrates it on Monday if it falls on a Sunday. I'm working on finding a balance between working, writing, and of course, sleeping.

~Meg~

NaNoWriMo Take 2

Hello and welcome back. 

I've decided that I'm doing NaNoWriMo again this year. It will be my second attempt. I say attempt because I failed when I did it last year. I'm going to do updates, but I don't know how many yet. 

The major obstacle I will have this year is that I'm supposed to be starting a full time job in November as a police dispatcher trainee. It's shift work, so I won't be writing at the same time every day. You keep the same schedule for two weeks and then rotate hours for the next two weeks and so forth. I'm working on a schedule for getting through November, but I will have a better idea when we get our schedule on the first day of work.

Last year, I was a pantser. This year, I'm a plantser. I have a general idea of what I'm going to be writing my novel about, so it's going to be more a combination of both a planner and a pantser.

Good luck to any NaNoWriMos out there!

~Meg~

Symptoms and Triggers #Meg'sLongQTJourney

This is the next installment of my Meg's Long QT Journey Series. To follow will be the symptoms and symptoms associated with Long QT Syndrome. To read from the beginning, click the links below:

1. The First Seizure
2. The Second Seizure
3. The Third Seizure
4. Getting the Diagnosis
5. What is Long QT?
6. Types and Genetics

Symptoms:

• Fainting
• Seizures
• Sudden Cardiac Arrest

These are the only and main symptoms of long qt syndrome. They can occur with very little to no warning; they can be brought on suddenly.

Long QT Faint vs Vanilla or Common Faint vs Other Faints

Long QT Faint:

• a sudden drop or loss of consciousness 
• the actual faint occurs in mere seconds
• little to no warning that a faint will happen - won't last more than a second or two

Vanilla (or Common) Faint:

• presents with warning signs
• takes longer to actually lose consciousness

Vasovagal syncope is the most common cause of fainting. It occurs when there's a sudden drop in heart rate or blood pressure. It can be caused from: standing too long, being in an overcrowded environment, being overheated, dehydration, fatigue, stress, the sight of blood, etc. Symptoms usually involve dizziness, lightheadedness, feeling nauseous, blurry vision, paleness, and sweating.

And then there's POTS, which is also known as postural orthostatic tachycardia syndrome. A faint from this occurs from a lack of blood flow when a person goes from a reclining position to an upright or standing position too fast. It produces a rapid heartbeat and lightheadedness that can cause a person to faint. There are other symptoms of this, but I only wanted to mention the most common ones.

Seizures

There are multiple reasons for seizures to occur: epilepsy, head injury/trauma, brain tumor, and for the sake of this, long qt syndrome.

A seizure happens when there is a lack of blood flow to the brain.

Long QT vs Epilepsy

When someone has a seizure, one word comes in mind: epilepsy. While epilepsy is the most common cause of seizures, it is not the only reason for seizures to occur, as I mentioned above. However, Long QT patients can often get misdiagnosed with epilepsy for this very reason. I had three tonic- clonic seizures, also known as grand mal. For me, I felt normal after coming around (the seizures lasted a few minutes and it took a few minutes for me to come to fully - I believe they would last 5-7 minutes) except for being fatigued. By the next day, I was fine in that regard.

Since fainting and seizures can occur from a number of things, it is crucial to get a thorough evaluation if you experience either a faint or a sudden onset of a seizure. When I was going through my seizures, the possibility of epilepsy came up after all three, more so after my second one. If it wasn't for my pediatric cardiologist after my third one, I could have been diagnosed with epilepsy myself.

Cardiac Arrest vs Heart Attack

The last symptom I'm going to mention is cardiac arrest. Cardiac arrest often gets mistaken for a heart attack, but there are difference between the two.

Cardiac Arrest:

• electrical problem
• occurs when the heart malfunctions and stops beating unexpectedly
• Cardiac arrest is triggered by an electrical malfunction in the heart that causes an irregular heartbeat. With its pumping acting disrupted, the heart cannot pump blood to the brains, lungs, and other organs.
• Seconds later, a person becomes unresponsive, is not breathing, or is only gasping. Death occurs within minutes if not treated.
• It can be reversible if treatment is started within minutes. Proper treatment is CPR and the use of an AED, automatic external defibrillator. 
• In some rare occurrences, the heart will return to its normal rhythm without intervention.

Heart Attack:

• circulation problem
• occurs when blood flow to the heart is blocked
• A blocked artery prevents oxygen-rich blood from reaching a section of the heart. If the blocked artery is not reopened quickly, the part of the heart normally nourished by that artery begins to die.
• Symptoms of a heart attack may be immediate, but more often symptoms start slowly and can persist for hours, days, or weeks before a heart attack. 
• Unlike with cardiac arrest, the heart usually does not stop beating during a heart attack. 
• Symptoms can be different for men and women and they include: chest pain or discomfort; shortness of breath; cold sweats; nausea/vomiting; back or jaw pain; or pain radiating down the arm, in particular the left arm, but can be either side.
• The longer the person goes without treatment, the greater the damage.

Most heart attacks do not lead to cardiac arrest. But when cardiac arrest occurs, heart attack is often the common cause. Other conditions may also disrupt the heart's rhythm and lead to cardiac arrest.

Credits:

https://cpr.heart.org/AHAECC/CPRAndECC/AboutCPRFirstAid/CardiacArrestvsHeartAttack/UCM_473213_Cardiac-Arrest-vs-Heart-Attack.jsp cardiac arrest vs heart attack

Triggers

In a previous post, I mentioned that there are three common types of Long QT Syndrome. I believe the triggers that will be brought up can be for any of the types. The triggers can cause irregular heartbeats or arrhythmias that result in the symptoms of Long QT

Long QT 1

• physical exercise, particularly swimming
• emotional stress
• torsades de pointes, a fast heart rhythm caused by the ventricles, occurs more often in type 1
• Patients with type 1 may have more arrhythmias that can cause symptoms, but the episodes usually stop on their own.
• the symptoms/episodes are less likely to be fatal

Long QT 2

• startle or surprise
• sudden loud noises such as an alarm clock, car horns, a doorbell, or a siren
• emotional stress

Long QT 3

• rest
• during sleep
• arousal from sleep
• Type 3 is often association with having bradycardia, or a slow heart rate, which cause the arrhythmia and symptoms to occur.
• Patients with type 3 have fewer episodes of arrhythmia.
• Symptoms/episodes are more likely to be fatal.

While type 3 can be more fatal and type 1 less fatal, all three of these types and the other genetic types can have sudden cardiac arrest and can be fatal. While not all triggers may be known, they share common ones. For instance, type 5 triggers are similar to that of type 1.

Triggers can overlap. For instance, someone with type 3 can experience symptoms during sleep and with startles. Likewise, someone with type 1 may experience symptoms from exercise and startles as well.

More information will be provided in later posts on how all this effects lifestyle, especially when it comes to sports and exercise. After all, it is still important to stay fit and healthy despite having a heart condition.

~Meg~

2018 July Camp NaNoWriMo Final Update

Yes, I'm sad and disheartened to say that I did not reach my goal for the July Camp NaNoWriMo. I ran out of time, between babysitting, working, and getting a trip to the beach, in which it rained the whole time.

My goal was for 25,000 words and my final count came in at 9,884 words. I did have a couple good writing days near the end, but it wasn't enough. I did accomplish some groundwork though to the piece I'm writing. I struggled with writing one section of it, which held me up a little bit.

I am planning on doing NaNoWriMo again in November, this time hoping for a better outcome. I am determined to finish and complete it at least one time.

~Meg~

2018 July Camp NaNoWriMo Update 2

July Camp NaNoWriMo Update 2

I'm going to keep this short and sweet.

These past two weeks have kept me busy with work and writing. While I am not where I would like to be for Camp NaNoWriMo, I have been making slow and steady progress with my writing project this month. With only nine days to go, I am still behind and have some ground to make back. There is enough time for me to win this thing and I'm going to put every effort in trying to succeed my goal of 25,000. Right now, I am around 5300 words.

~Meg~

2018 July Camp NaNoWriMo Update #1

It's been just over a week now with Camp NaNoWriMo.

First Week Recap:

• I didn't get a chance to write every day. 
• As of the other day, I had completed 1,992 words out of my goal of 25K words.
• I didn't get off to the greatest start.
• From this point forward, I plan to get refocused and back on track.

Second Week at a Glance:

Some challenges will present this week as I am back to working (I work as needed for a funeral home and I can go awhile without having to work). I have a day trip that unexpectedly came up for later in the week as I'm now taking someone's place who had to back out at the last minute.

No matter what, I plan on writing when I can to get back on track with Camp NaNoWriMo. Life can make things hard sometimes, but it comes down to perseverance.

~Meg~

Writing Plans for July: Camp NaNoWriMo

I recently signed up for Camp NaNoWriMo for July. If anyone is unfamiliar, it is a mini version of NaNoWriMo, held in November.

With NaNoWriMo, you are required to write 50,000 words. It doesn't mean that you'll necessarily reach that, like when I failed short to do so this past November.

In Camp NaNoWriMo, you can set your own writing goal, whether that be reaching a certain number of words or writing for a certain amount of time every day in July. I believe the Camp version is done a couple of times throughout the year in preparation for NaNoWriMo in November.

As of right now, my goal is to reach 25,000 words during the month of July. I am planning on working on a fiction novel, loosely titled The Widow in the Bookstore. I usually don't like to name something I write until I'm done. You know, I have never finished writing an actual novel before. I'm my worst critic and I usually scrap them because I never think it's good enough. I plan on changing that in July as that is my other goal: to finish writing a novel without stopping to edit it before it's done being written.

I will give daily updates here so you can follow me along.

~Meg~

Types and Genetics of Long QT #Meg'sLongQTJourney

There are several classifications when it comes to the types of Long QT Syndrome.

First, there are two main forms of Long QT:

1. Inherited
2. Acquired

It's self-explanatory, but the inherited form is genetic related and the acquired form is caused by other reasons, in particular medications that prolong the QT interval.

There are two forms of inherited long QT:

1. Romano Ward Syndrome
2. Jervell and Lange-Nielsen

The main difference is that Romano Ward is the genetic version not associated with deafness, while Jervell and Lange-Neilsen is associated with profound hearing loss/deafness from birth. JLN is still genetic and this is common if you happen to inherit genetic variants from both parents.

One Step Further:

As of this writing, there are, I believe, 15 genetic types of Long QT. It is known that more genetic variants have yet to be discovered. I won't get into all the specifics of the gene variants on here, as it's beyond my expertise.

Some general information:

• The most common gene variants are Long QT 1, 2, and 3. 
• Since they are the most common, the most research has been done on these three genes and more is known about these three genes than the other 12. 
• The others are more rare and some of the latter ones have only recently been discovered. 
• It is known that Long QT 5 is somewhat similar to type 1. 
• Long QT 8 is also known as Timothy Syndrome. 
• Timothy Syndrome is a type of long qt that includes other symptoms such as syndactyly (webbed fingers and/or toes) and developmental delays.
• There's a 50/50 percent chance of passing the gene to your children.
• A spontaneous mutation occurs if you are the first person in your family to have a long qt gene.

In Long QT, there are certain triggers/causes for symptoms to occur for each type. However, the triggers can also overlap. I will be going over this in my next post when I will be writing about the symptoms of Long QT.

If you're interested in reading my previous posts in Long QT Journey series, the links are below:
1. The First Seizure
2. Second Seizure
3. The Third Seizure
4. Getting a Diagnosis
5. Long QT Syndrome Explained

~Meg~

What is Long Qt Syndrome? #Meg'sLongQTJourney

I'm bringing Meg's Long QT Journey back starting now. The plan is to post two to three times a week until I'm finished the series and I will let you know when that is at that time.

If you missed the first four posts that I originally did or to refresh your mind, you can read them here:
First Seizure
Second Seizure
Third Seizure and Diagnosis Part 1
Third Seizure and Diagnosis Part 2

Now it's time for what exactly is Long QT Syndrome. But, first, let's talk about how a normal heart works.

How a Normal Heart Works:

To understand long qt syndrome, it helps to know about your heart and how it works. The heart is a muscle and to pump blood to your body, the heart normally beats about 60-100 times a minute. It usually is faster in infants and children.

The heart has four chambers. The upper chambers, called atria, receive blood from your body and lungs. The lower chambers, called ventricles, pump blood out of the heart.

To pump blood well, the heart's chambers must work together to contract and relax at the right rate. Electrical signals that move through your heart control these actions.

The signals start in your sinus node. This is a group of cells in the right atrium. The signals move through the atrium to the atrioventricular node. When they pass through this node, they make your ventricles contract. This is called depolarization.

Your heart's electrical system recharges after each heartbeat. This is called repolarization. The heart relaxes so it can fill with blood and get ready for the next beat. Long QT Syndrome affects this process.

What is Long QT Syndrome?

Long QT Syndrome is a condition that affects your heart's electrical system. If you have LQTS, your heart works correctly as a muscle and a pump. However, your heart either takes too long to recharge between beats or it recharges in a disordered way. As a result, you could develop an abnormal heart rhythm.

An EKG records your heart's electrical activity as waves. These waves are named with the letters P, Q, R, S, and T. The waves Q through T show electrical activity in your ventricles.

The space between the start of the Q wave and the end of the T wave is called the QT interval. It measures how long your heart takes to contract and then fill with blood before the next heartbeat. 

The EKG shows whether your QT interval happens in a normal amount of time. If it takes longer than normal, it is called a prolonged QT interval. 

Overview:

Basically, Long QT Syndrome can be considered to be a type of arrhythmia, a heart rhythm condition that can cause fast, chaotic heartbeats. They can lead to the symptoms of long qt obviously, but I will get into the symptoms in a later post.

Credit and Links

All the above information about the heart works and the explanation of Long QT Syndrome gets credited to Mayo Clinic. They are one of the leading foundations for research and education of Long QT Syndrome in the United States.

~Meg~

My Long Qt-Versary

Yesterday marked 17 years since I was officially diagnosed with Long QT Syndrome, which means I was diagnosed on May 15, 2001. Some people may ask why I choose to celebrate this day? And the answer is simple: I celebrate because it was a life changing moment in my life. It has defined the rest of my life, although I do my best to not let it control me. After all, I'm normal in every single way, except for this one thing. I had to change a few aspects, but other than that, I'm fine.

It also means that I've been taking my beta blocker medication for 17 years as well. I'm on Nadolol and at times, it wasn't easy. I was only 14 years old when I started taking it. It left me really fatigued for several weeks and getting back to an exercise routine (with only activities that my cardiologist cleared me for) was nearly impossible. I've been through a couple dosage changes. The first one didn't effect me too much as it went only from 10mg twice a day to 20mg twice a day and it was within a year I believe of my diagnosis. It was meant to help me with my migraines at the time, but that's not part of my Long QT story. In 2009, my dosage went from the 20mg twice day to 40mg twice a day, which is where it currently is to this day. It went up then because I got too used to the old amount. That was definitely the worst I have ever felt while my body adjusted to the new amount, but I managed to get through it slowly but surely. I will elaborate on all of this as I'm bringing back my Long QT series soon. I had started it last year, but circumstances have prevented me from continuing it. I'll post my links to my story and how I got to the diagnosis at the end.

While dealing and managing side effects hasn't always been easy, I feel like it's nothing compared to the fact that I haven't had a major symptom of Long QT in these 17 years as well (my last seizure was in February 2001, only a couple months before getting diagnosis). I have had some minor issues so I can't complain. It does help that Nadolol is the preferred and best treatment in managing Long QT Syndrome. Click here for a recent article discussing this issue. This does not mean that everyone tolerates it as well as I have. 

Since the Nadolol has worked so well with me, I wanted to take the time to note the importance of taking medication as recommended. Yesterday, in one of my support groups, someone named Ellie posted the following about her daughter: 

This past Sunday, my daughter-Taylor came face to face with the ugly truth of SADS (Sudden Arrhythmia Death Syndrome)- LQTS Type 2. In 2012, our entire family was genetically tested for LQTS. We tested positive for the HERG gene a rare mutation which puts us at risk for sudden death. At the time of diagnosis, Taylor had not had any warning signs or symptoms typical of LQTS Type 2. Her recorded QT on EKGs at that time was 460. The EP and cardiologists that were on our family's case felt that treatment with a daily beta blocker would be appropriate for Taylor.  Taylor began beta blockers but struggled with the side affects. She decided on her own that she would stop the betas.

Fast forward to this past Sunday, I can say we are so lucky to have her with us today! She survived a sudden cardiac arrest Sunday evening. Her roommate found her unconscious, blue, and not breathing- He was quick enough to act and immediately called 911- by the time the first responders arrived her heart had naturally and slowly began to revert back to its natural rhythms- and CPR was not necessary by the time the paramedics arrived. She was transported via ambulance to the local hospital and admitted.

Upon arrival a 12 lead EKG revealed her QT was 525. She has been seen by both cardiologist and the EP and all appropriate tests have been run. She is scheduled for placement of an AICD this afternoon at 4pm.

Taylor's birthday is on the 16th- 26 years old on Wednesday! As her mother- I am so thankful she is here with us and relieved the cardiologists are being assertive and pro active with their treatment and the decision to move forward with and AICD placement. We will be celebrating way more than just a birthday this year!!!!

Taylor is a healthy very active and social, young adult. She had created the perfect combination of circumstances to lower her QT threshold which put her at a very dangerous high risk for the SCA to occur. She is an active water girl and had spent the weekend at the lake- water sports, lots of sun, alcohol consumption, energy drinks, little sleep...and dehydration were all part of the picture. I share this here in hopes to raise awareness of the dangers and warning signs of this rare genetic disease.

We were given permission to share, but I changed some names/places for privacy. I bear no judgement on her daughter's decision to not take the medication, but I'm putting this out there to know the risks involved. The problem with Long QT syndrome is that it can be unpredictable and events can happen at any given time, even if you haven't had a symptom in years. The purpose of betas and other treatments is to prevent events from happening, but it doesn't necessarily mean another event won't occur. That's one of my biggest fears - that I'll have another seizure or symptom at some point in my life even though the Nadolol has done its job for 17 years. It's the scary part of Long QT Syndrome and it doesn't come with any warning - the symptoms happen suddenly with little to no warning.

As I celebrate this day, here's to 17 more years symptom free.

Links:
My Journey that led to Long QT Syndrome:
My First Seizure
The Second Seizure
My Third Seizure Part 1
My Third Seizure Part 2 and Diagnosis

For more information:
Risk Estimate, Best Treatment in Long QT (I linked to this in a paragraph above as well)
Sudden Arrhythmia Death Syndromes Foundation

~Meg~