The Fact of the Matter

 

When I was in high school, my friend and I chose the “Pro Life” argument side for our senior paper and debate. We did so much research that we had a stack full of note cards of references and quotes and facts. However, during the debate, and after finding out that my friend and I were more prepared and had more evidence to support our side, the “Pro Choice” team started attacking our characters and our religion and our heritage in a discriminatory way instead of providing evidence for their side of the argument. I learned a hard lesson that day – that even though you have facts and research on your side, it doesn’t necessarily mean that the other side will listen, no matter how lacking they are in their information and facts. My point is, when did it become okay to attack people for having opposing ideas? And more importantly today, when did it become okay to censor them by preventing them to even say or present their opposing ideas and research and facts in the first place? Everyone in that classroom agreed that my friend and I won the debate that day – however, not a single person in that room said they would change their mind about their position on the matter. And that’s okay. I wasn’t expecting to change anyone’s mind. I was however expecting people to think about what we presented and respect the research and facts  – because if we aren’t basing our actions and possible change on truth, then what are we basing it on?

I’ve been thinking a lot about forced compliance and censorship and the shutting down of opposing ideas recently. It is a fine line that big media is playing right now – pretending to represent both sides fairly, limiting the influence of opposing arguments, and downright making up false negative narratives about people with opposing ideas so that they can falsely discredit them. Did you know that in 2013 one of our US presidents legalized the use of propaganda on the citizens of the United States? You can read it for yourself in HR 4310. And for some reason, everyone missed the significance of that. And what happened to all of my friends that are “Pro Choice”? The ones that said I have the right to choose what I do with my own body – oh, except if I want to choose not to wear a mask during the plandemic. Right. Remember that the people who are trying to influence popular opinion in their favor own the major news, media and social media stations? The bias is overwhelming, unjust and un-American. Just consider these quotes from Nazi Germany (Hitler and his Reich Minister of Propaganda): 

“Make the lie big, make it simple, keep saying it, and eventually they will believe it.” Adolf Hitler.

“All propaganda has to be popular and has to accommodate itself to the comprehension of the least intelligent of those whom it seeks to reach.” Adolf Hitler

“If you tell a lie big enough and keep repeating it, people will eventually come to believe it. The lie can be maintained only for such time as the State can shield the people from the political, economic and/or military consequences of the lie. It thus becomes vitally important for the State to use all of its powers to repress dissent, for the truth is the mortal enemy of the lie, and thus by extension, the truth is the greatest enemy of the State.” Joseph Goebbels

“The most brilliant propagandist technique will yield no success unless one fundamental principle is borne in mind constantly – it must confine itself to a few points and repeat them over and over.” Joseph Goebbels

“Through clever and constant application of propaganda, people can be made to see paradise as hell, and also the other way round, to consider the most wretched sort of life as paradise.” Adolf Hitler

“Think of the press as a great keyboard on which the government can play.” Joseph Goebbels

So let’s change focus for a bit and remember why freedom of speech and freedom in general is something worth fighting for. Before we all came to earth, our spirits lived in Heaven with God. There were two plans offered. Satan wanted to force all the children of God to comply (forced compliance – sound familiar?) and to believe. Jesus wanted every child of God to choose for him or herself and then provide a Savior knowing that they would make mistakes. The first plan does not allow room for any growth or progression. If you are forced to do something, then you really aren’t building your character by having to weigh the pros and cons and deciding for yourself, learning, and continually having to work on that growth and progress. And what is the whole purpose of our existence? To progress. That’s why progress is “damned” when you can no longer move forward.

As a parent I can tell you that it is hard to watch my children stumble and make mistakes. It is hard to work tirelessly to teach them what they should do, and then step back and let them choose for themselves. When learning to walk, it is often hard to watch our children fall. But if we didn’t give them the opportunity to fall, then they wouldn’t become the strong, typically developing children that they need to become so that they can continue to learn and grow. We can’t have it both ways. We can’t say we want our children to grow up strong and physically able, and also say, no, I will always carry them and make all of their decisions for them so that they will never fall. It is just something that comes with the territory of growth – the opportunity to fall – make mistakes – choose the less ideal path – get hurt along the way. Now let’s think about this in terms of human rights, freedoms and government overstepping.

One mentality says that because one person drank and drove, causing an accident, no one can ever drink alcohol anymore because they might drive and cause an accident – thus controlling the possibility of that initial choice. The other mentality is that you have the ability to choose if you drink, however if there is driving and an accident involved, then you will have consequences. (The same two sides could go for owning a firearm, or forcing condom use because it might protect the other person from pregnancy or an STD, or choosing to wear a mask in public or not). Learning and growth isn’t for the faint of heart, and when you involve an entire society of individuals that have the opportunity to make their own decisions it can be an extremely difficult thing to have to go through sometimes, especially when innocent people who are not involved in an individual’s initial decision, are harmed. But without that type of scenario, we cannot “prove” ourselves to God – we cannot progress and learn from our mistakes and repent and obtain forgiveness and then try to do better and make things better in the world. Can’t you see? Removing the option to make the mistake in the first place is not the way to achieve learning and growth, even though there may be casualties along the way. Our life right now is tragic and challenging and very ethically difficult at times, but this is the plan that Jesus endorsed – and in fact offered to sacrifice himself for. Why? Because this is the only way we can truly progress – line upon line and precept upon precept. “For it must needs be, that there is an opposition in all things. If not so…righteousness could not be brought to pass, nether wickedness, neither holiness nor misery, neither good nor bad…” 2 Nephi 2:11. In other words, without opposition in all things, there would be no reason to prove ourselves. If there was only ever “happy” then we would never be “happy” because we would not have “sad” to compare it to. So ask yourself, what is the purpose of the media to shut down opposing ideas if not to force their agenda or propaganda on our society?

Yes it would seem easier to just eliminate the possibility of that error or lack of judgment or innocent bystander harm. It seems logical and like it would make everyone happy. But essentially, you would have to take away the rights of everyone, which would “damn” everyone’s progress, and when you can’t move forward you can’t find joy or true happiness. “And it must needs be that the devil should tempt the children of men, or they could not be agents unto themselves; for if they never should have bitter they could not know the sweet –” D&C 29:39. It is interesting to remember though, that we were never meant to have to endure this “growing season” on earth with our physical bodies on our own. Jesus Christ is and always will be there to lift us up, support us, and guide us when we seek His help. “And ye shall know the truth, and the truth shall make you free,” John 8:32. Free from what? Free from sin and oppression and darkness.

So that brings us back to this question: Why has there been so much fearmongering by the media lately? Because when you cause widespread fear, and then “propose” the solution to that fear to be something in the people’s favor (or what seems to be in their favor), than people are more likely to go along with it. Have we learned nothing from our history? Oh yeah, those same elite own our textbook companies and invest in public education curriculum and the narrative of our history. Just for a refresher for anyone who wants to do their own research…

IF you think about it, if these things are removed or severely controlled, it is a lot easier to make the sheeple in a country comply with whatever you are wanting them to comply with for “the greater good of the state”:

1. Removing or severely limiting freedom of speech

2. Removing the right to bear arms and the right to protect your own family

3. Removing the ability to worship freely - many of our ancestors came here to get away from that!

4. Removing the freedom of the press (or overtaking it and slanting or changing the truth and pushing propaganda)

Seriously, have we learned nothing from our history? What was the narrative during WWII? And why did the people go along with it? Because they were told it was for the good of their state. So why do we herald those who stood up against it and saved lives heroes? Because they were able to figure out for themselves what was actually going on – and brave enough to stand up against it. And many lost their lives for doing so. Many think the United States could never fall into that category. All I can say to that is that for as long as there has been good, there has also been evil. Please be aware. Please research and find your own facts. I’m not asking you to change your position based on what I say or show you.

“Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you; For every one that asketh receiveth; and he that seeketh findeth; and to him that knocketh it shall be opened,” Matthew 7: 7-8.

Please find an uncensored news and social media source and learn the facts before you blindly push an agenda that you don’t know about or the reason behind. If you need help finding resources that contain truth – please reach out. Sheeple are waking up and seeing what is going on – I mean really seeing. If you look hard enough, you will find truth. And let’s not forget the Holy Ghost who testifies of truth. If you see and truly ask, you can and will find the truth for yourself. You are not alone. We are not alone. I know that we are weary from everything that we see the media (including social media) telling us – so do your own research. You don’t hear the other side telling you that. You hear them saying to believe the narrative they are telling you. So please, for the sake of our freedoms and well-being, be brave, take a step back, and do your own research.

“And ye shall know the truth, and the truth shall make you free.” John 8:32

Today is the first day of the rest of our lives

November 6, 2020

It’s not about party lines, because both have been infiltrated. It’s not about conspiracy theorists trying to cause fear. It’s about good versus evil, and what the media is telling us that is happening on the surface, when below the surface everything that we know and love is being held in balance.

I am neither eloquent nor really smart. But what I am is concerned, not just for our country, but for the human population as a whole. When you start to investigate – and I mean REALLY investigate, without the influence of big media or what people are saying on the surface, things start to become clear. I was recently reading about the Gadianton Robbers – the evil that caused both the destruction of the Jaredite Nation (Ether Chapter 8) and Nephite Nation (Helaman chapters 2 and 6) you can find these statements in the chapter headings: “Modern Gentiles are warned against the secret combination that will seek to overthrow the freedom of all lands, nations, and countries,” and, “The robbers take over the Nephite government.” This unfortunately is not new to the human race. This has to do with the root of all evil and the lying, deceiving and cunning abilities of evil that will always be there until banished from this world.

I’ll preface this with the fact that I was very comfortable being one of the sheeple in the masses. I appreciated being told that all is well and that the illusion of everything around us is just what it seems on the surface. However, at some point I had to reconcile with myself that even if I just go by the people that I have met and interacted with in my small circle of human interaction, everything is not always as it seems on the surface. I don’t like to make scenes or incite conflict, so unfortunately the people who seem to be drawn to me are the ones that want to take advantage of me. I can relate personal experience after personal experience of people who I thought were good friends of mine, and how I found out the hard way that they didn’t care at all about me or my family – and because I was blinded by their charming and eloquent ways, my family and I have been blindsided, more than once. And I keep falling for it. So I can’t be the only one, right?

This morning I felt a call to speak up about it. Not a call from myself or my desire to make waves – because if it were up to me I would be more than happy to wait for others to feel the need to do that so I could sit back and observe in my little sheeple pasture. But today a higher power has opened my heart up to the possibility that I have a voice through written words, and that I needed to use it. Not something that I really wanted to hear at 4:30am this morning. But nonetheless, here I am, trusting that people have the right to know that all is not well. They have the right to know that what is going on will affect them on such a basic freedom level – not if – but when – which means EVERYTHING is at stake.

First of all, I know you are asking what makes me think that my eyes have been more opened than your eyes. And I can tell you, the skeptical passive peacemaker that I am was not super open to the idea that there were deep and dark forces acting below the surface. Like I made mention to above, people and institutions have really screwed me and my family over the last several years, and hoping that the rest of the world is not like that just doesn’t make sense. People are subject to human fallacies. And people are drawn to power and security and wealth. No matter my desire to believe that all people are generally good and have good intentions, I know for a fact that that is not true. And people would rather be told that all is well rather than know that really scary and evil things could be going on right below our noses. Case in point, also true.

My eye openness started with “conspiracy theories,” a term coined by the CIA in the 1960’s, and with a negative connotation attached to it. Conspiracy theories weren’t considered negative until then. In fact, conspiracy theories have been the impetus for the search for answers and solutions for a long time. We’ve probably all heard our fair share of conspiracy theories, and think that the people who come up with them are crazy, and I used to think that too. Until I started to do my own research. There is so much public information out there, but there are very few means whereby to get that information – the main source being the mainstream media – conglomerates that all work together and who are all owned by the same high powered and wealthy individuals – yep – every single major news station. Could they possibly all have the same agenda? Absolutely. The day I learned that Google was possibly biased and maybe corrupt, I didn’t want to believe it. Why? Because that would make my life more complicated. That would make me have to think harder and react smarter. Why would certain search topics be diverted to certain media responses that all said the same thing? Why were all dissenting arguments being held at bay and when one may have surfaced, the same mainstream media discredited it as soon as it did? And to think that my first major was journalism. Something about focusing on the facts to tell stories resonated deeply with me. But now I’m glad I changed my major. I feel bad for those “journalists” that feel like they are making a difference out there. Instead, they are pushing someone else’s agenda.

It’s a hard pill to swallow. It is a hard idea and concept to accept – that these major corporations don’t have our best interests in mind – but rather their own? Because if that is true, than really, who can we trust? The mainstream media rules the airwaves and the American people hang on their every word, obvious bias or not, because they are supposed to be impartial and based on facts and they are our sources of legitimate information, right? Have we been that conditioned that we don’t even see it? Yes.

Over the last few months I’ve watched news stations from other countries around the world and realized how their citizens are shown news stories that we aren’t. Other countries have been rioting in their streets to get the citizens of the United States of America’s attention because most of them are fighting for their freedoms and families and have already been down the road that our country is currently trying to go down. They are pleading for us to see, really see what is going on and to quit pretending that everything is going to be okay because big companies that we’ve grown to love and trust have our best interests in mind. Do you see the problem with that? If I, in my 42 years of life have encountered multiple people who have sought to physically, emotionally and spiritually abuse and harm me and my family – some succeeding in a very painful way, then why do I trust extremely powerful and wealthy people who couldn’t have made it to the top without stepping on a few of the little guy’s toes on the way? Why are people in other countries rioting to get our attention, only for our news sources not to cover it? And why are their news stations reporting on things that are happening in the United States that we NEVER see on our news stations here? Then you have to wonder what they might have to hide. Do I have your attention yet?

The rabbit hole is long and deep and includes several public cover-ups that have been buried so deep in the media that they are either impossible to find, or are made to look like crazy people invented them. I had to take this rabbit hole in very tiny baby steps. It is heart wrenching and disgusting and anger inducing, the amount of lies and fabrications that we have been fed. It is overwhelming to say the least. Why? Because we have been conditioned to think that the possibility of deception is outrageous, essentially questioning our own sanity for even stepping through this rabbit hole and the possibility of everything that it opens up to us. But seriously. Our freedom of speech is hanging by a thread. Social media outlets that are also owned by these same elite media owners have been silencing specific voices for a long time now – and it has been more obvious than not recently. We literally have no where to turn to get REAL news and information that has not been filtered, adjusted, and even completely fabricated in some way.

But since going through that rabbit hole and swallowing the “red pill” it is so obvious that the truth has been surrounding us this whole time – and I see it regularly now! We’ve just been force-fed lies for so long that that was and is our norm. It hurts to think how many innocent people that have realized this sooner than me, who have been silenced for trying to help the rest of us see – it seems impossible. It also scares me, but I feel like I can’t be part of that silent heard of sheeple that aren’t going to take a stand and demand better, demand honesty and transparency and human decency – and not because it is politically correct or because we want our friends to see us backing a cause that passionately moves us – but because it is the right thing to do. And honestly, I’m not sure I believe in everything that I have since learned, but I do believe in some of it – which is enough to make me question all of it. Vaccines – and the epidemic of autism in our country right now. The CIA and projects/programs used AGAINST the American people. Gun control and communist ties. An outdated education and higher education system that is failing our children. Child sex-trafficking and the elite, Hollywood, and satanic rituals. The fake news - all bought and paid for. Fluoride – a poison – mandated to be in our drinking water. Big pharma and their control of medical treatments and studies. Lobbying and corruption in congress. The truth behind the Black Lives Matter campaign. Different political parties and their link to slavery. What is happening to the Jewish people in New York City right now?! Immigration and the truth of the wall. COVID-19 and the many doctors that have come out about the plandemic – causing government to overstep and force mandates on us that are unconstitutional. Unemployment. Political and community chaos. Government bureaucracy. A plethora of agencies to help individuals and families with no real ability to actually help those in need. Due process that has been ignored or twisted. Government simulations of things that are happening right now. Population control. The truth (or falsehood) about global warming and airplane contrails. The list goes on and though I used to think that people who brought all of this up were crazy and had nothing better to do with their time than find things to bicker and make crazy assumptions about – and some may be those people – I know now that it runs deeper than that, and many of the people behind them are ordinary people who have truth they are trying to share.

There are evil forces at work here. Isaiah 5: 20 says “Woe unto them that call evil good, and good evil; that put darkness for light, and light for darkness; that put bitter for sweet, and sweet for bitter!” We’ve all been given the ability to think and act for ourselves. We’ve been given eyes to see and ears to hear. Now we just need to make sure that we are looking at and hearing the things that aren’t tainted with bias, or complete lies. And how do we do that in this day and age when Google is supposed to know everything, and finding information without Google is extremely difficult? Well, accepting the fact that we may not be able to trust Google and the other major media outlets that rule the free world is a start. Doubting that everyone has your best interest in mind is a start. Understanding that good may be shown to us as evil and evil may be shown to us as good is a start. Maybe asking for discernment from God, and accepting the answers that are given, no matter how hard to swallow. Maybe deciding that you will no longer stand by and watch while evil happens right before you, even though hidden. And maybe making a decision to say something or stand up for something or fight for something that you want to preserve for yourself and your children. And again, not because it is the most recent fad or tag line. But because you truly care about justice and freedom and our way of life. This path will not be easy, but really, is there any other way? Is there any other way to maintain our freedoms – whichever are most sacred to you – than to fight against those who are trying to take those freedoms away in such a sleek and smooth manner to make us think that there is nothing wrong with our system and the people involved with it?

If the Nephite and Jaredite nations had taken a deeper look and had been outraged by what they saw or failed to see, would they have fought for their freedoms and their families a little harder? Getting too comfortable – and accepting everything at face value even knowing that there is always a deeper root or cause - is when we need to worry. We can’t afford to be complacent any longer.

And again, it is not about political party or any specific charge or group. It is about our lives and freedoms. It is about the steps and chaos that have led every socialist and communist country down their paths, taking the sheeple and their needs and concerns and ideas out of every equation, until they no longer have a voice at all. HAVE WE NOT LEARNED ANYTHING FROM OUR HISTORY? Oh yeah, probably not – because our textbooks are also written and owned by the same elite and media moguls that are feeding us lies.

I believe most of us are good people and have a general desire to do good and not harm. I believe that we have been fooled into thinking that there is nothing sinister going on. I believe that we are all in the same boat, meaning that we all have to come to an understanding on our own about what is happening all around us. We’ve already been told that what caused the destruction of ancient civilizations is threatening modern day governments. I don’t think it is anything different. It is pure evil – orchestrated by Satan himself – and his rituals and methods that have never left. Those who participate have just gotten very good at being two-faced.

So if everything is so corrupt, how do we make a difference? We make a difference one person at a time. As you decide that you no longer want to be a sheeple, and you make yourself aware and do your own research instead of depending on others to do it for you, you are starting to make a difference. I don’t have all of the answers, but I do know that normal people like us who care about our future can do something. They can write a blog post, share with their friends and family, and stand up for what’s right no matter the backlash. Because that is what they want. They want to instill fear and chaos and bully us into submission – whether we are aware of what they are doing or not! They already track our every move, sensor our every attempt to bring truth to light, and shame us when we finally get close to finding out what is really happening. How much worse could it get?

Haters will hate, but I’m trying to use my voice while I still can – with God’s encouragement. Our founding fathers fought tooth and nail to create this great nation and to provide a place where human rights and freedoms are more important than wealth and power. That has to mean something. I’m not interested in contending with those who have not already searched and figured things out on their own yet – if all of your “facts” can only be traced back to the media and whatever spin on the truth benefits them the most, then I suggest you double check those facts with non-media sources. The truth is out there and I urge you to do your own research and find out for yourself. If you look hard enough, you will find it. 

Bam! You have Huntington's Disease

When you are 19 years-old, healthy and happy, the last thing you expect to hear is that you have a 50% chance of inheriting a degenerative brain disease. Most people think about inheriting money, or blue eyes. Not me. Well, yes, me too. But it’s kind of hard to think about, let alone appreciate that kind of inheritance, when you are thinking about the possibility of inheriting the crude ability of becoming a vegetable right around middle-age.

Huntington’s Disease. It’s like having Alzheimer’s, Multiple Sclerosis, Parkinson’s, psychological disorders, and depression (both clinically and because of loss of brain cells), all at the same time, and progressively getting worse over time. They call someone like me, with an affected parent, “at risk”. And not surprisingly, those who are at risk and get the genetic testing done to tell them whether or not they have a very likely chance or not of starting symptoms around middle age, and test positive, have a high rate of suicide. After seeing a parent go through the progressive brain disease, the last thing you can cope with and handle is the fact that you will end up the same way. It kind of makes you appreciate inheriting thick ankles, or moles, or small breasts.

It is difficult to explain what goes through your head when your father comes back from rigorous neurological and psychological testing to figure out what is wrong with him, only to come back and explain that he has a disease that will take over both his mind and body before he is 40, and that by the way, you also have a 50% chance of inheriting it from him. Fifty percent. That’s like flipping a coin, and bam! You have Huntington’s Disease.

Surprisingly it wasn’t the outward appearance of the disease that scared us so much in my dad. He would have uncontrollable “chorea” movements, or his limbs would lash out and then become rigid for a while, and he would eventually have to use a cane to walk. But that was unnervingly natural and understandable. What we weren’t prepared for was the loss of his inhibitions, or his ability to comprehend consequences, and basic right and wrong. He did things that we never would have imagined that our virtuous, honorable, loving and kind father could have done. He was a completely different person, let alone the father who had been my knight in shining armor. It was both shocking and emotionally overwhelming to comprehend that this was our new reality, the whole while the very real possibility of me becoming the same anomaly in the future heavy on my mind.

I think that ignorance saved me at first. I didn’t quite understand the magnitude of my situation and what it meant for my future. Not to mention my biological brother and sister and what it could mean for them as well. But all of the sudden I started wondering if it was worth it to continue paying for my college education, if I should get married and have children – possibly passing it on to them. I wondered if I was taking enough pictures and writing in my journal enough to remember my memories that could be taken from me. I wondered if every twitch of my muscles was the start of a soon to be devastating decline in my muscle control or if every angry outburst was the beginning of many uncontrollable future ones. At nineteen, at the point where I was just starting to figure out my life and what to do with it, I became frozen in a terrifying land of “what if’s”.

And of course you expect that you will be able to handle things. Everything would be okay. You have your faith, your family, and your friends. But then the fear that came, only after watching my dad’s symptoms increase exponentially, was disconcerting. That is when reality hit hard.

Why me, right? Why my dad, my family? I was not strong enough to fight this let alone fight it well. I didn’t know how to become that pillar of strength my mom needed, my siblings needed, my soon to be fiancé needed. Not to mention my 5 younger adopted siblings, 3 of which have disabilities and challenges of their own to face every day. How was I going to overcome the distressing chill of despair that was snaking its way around my heart and my consciousness? How does one come to terms with the fact that their life could be cut short? But then knowing that even before that, their quality of life will decrease continuously until their dying brain can no longer keep them alive. And all of this while oblivious to their loved one’s sacrifices in caring for them, and heartache over their hurtful and flippant behavior. Suddenly I felt like I was in a bad, sad ending, drama movie.

So the next issue was whether or not to be tested. But does anyone ever really want to know that they have a ticking time bomb inside their head that will go off at an unknown time in the prime of their life? What kind of life would that be? One of constant worry and anxiety? But on the other hand, knowing that you don’t have it would bring peace and relief. But just like that coin, it could land on heads, and then knowing you do have it and symptoms will come, would probably be unbearable to live with. With marriage and children in the near future, would I change my life decisions if I knew that I had it?

The short answer is no. The long answer, in all honesty, was more like a yes. I’d like to think that it wouldn’t affect my life decisions to that extent, but when it really came down to it, I knew that it would. Besides, it would be irresponsible for me to not take it into consideration, wouldn’t it? Could I live with myself knowing that my future husband not only had to care for me, but also our child or children if we all had Huntington’s Disease? Could I live with myself knowing that I cursed my child with the same foreboding fate by bringing him into this world knowing that just a flip of a coin could determine that he would have this devastating disease too? I was embarrassed to realize that when faced with an impossible decision, selfishness won out. I had to know. I had to have that knowledge that I convinced myself would give me power or some semblance of control in this sordid situation. But as it turns out, genetics testing was just the beginning in this adventure we call life. 

I can’t explain the wave of deliverance that washed over me when my brother and sister and I all tested negative. Ironically, we had beaten the coin toss odds, the three of us. For some reason we were spared that one hardship in this journey. Now I find myself asking, “why me”? Why was I spared, and not my dad? I mean, isn’t it enough that he has hemophilia (inherited from his mom)? Why did he also have to inherit Huntington’s Disease from his dad? I’m not sure when, but eventually I also had to come to terms with the fact that yes, it’s okay that I don’t have Huntington’s Disease. 

What I’ve learned is that my family was given this experience in life for some reason, and we needed to embrace it for what it was: an unfortunate circumstance that could bring us together, or pull us apart - an opportunity to see what our true characters are made of. No one wants to live with “what if’s,” but I can tell you most assuredly, that knowledge can be power, but also sometimes, ignorance is bliss.

Huntington's Disease: Our Journey

My family used to have fun all of the time. We would go camping together, swim together, play games together, or have picnics and BBQ’s together. We were far from perfect, but my family was definitely having a very great time along the way. We were also very religious together. Our faith kept us strong, and our love and hope moved us forward.

Then things changed. Dad was forgetting things all of the time. At his office or at home, there were post-it notes everywhere, even in his shirt pocket. We thought that he had just been too stressed and needed a little more support. But soon thereafter he started to forget how to shift the gears in his car, to stop at red lights, and how to back up the car straight. He was very confused and troubled about his new found situation.  

He also started yelling and having angry outbursts all of the time. Any little thing could spark a raging voice. It was easier to avoid his path then to possibly encounter his unpredictable wrath. He never seemed happy anymore. And we never knew when his Jeckel/Hyde complex would switch. It was that simple. He was nice and fun, or mean and hurtful.

Then it was time. There had been rumors in the family that both my grandpa and my grandpa’s brother had a disease. The family had been very quiet about it and we hadn’t heard much because my grandpa and grandma had divorced a short time before my dad was born. Consequently, we did not have a whole lot of contact with my grandpa’s family. After taking into consideration many suspicions, my dad soon decided to see a neurologist. Then, a few months and a few more doctors later came the diagnosis: he had Huntington’s disease, a degenerative brain disease. This was only the beginning.

Mom and dad sat my brothers, sisters and I down to tell us about the disease. They also explained that they decided to rewrite their wills and create a new trust. They planned for when my dad would leave work and go on disability, adjusting his life insurance and other tedious things. But I remember the conversation vividly when they mentioned how my mom had planned to care for my dad when he was no longer able to care for himself.   

They did not want this disease to change our family at all. Everything would be taken care of, the plans were made, and there would be little worry about. We were agreed up until they told us that we each (of the biological children) had a 50% chance of inheriting this disease.

I admit we were moderately afraid. My sister and I were both engaged with plans to be married, and start our own families. Okay, this news was a little more than disturbing. It was then that we understood how real this disease was. If we had this disease, we could possibly pass it on to our children as well. For days there were a lot of thoughts, prayers and concerns that were voiced, but nothing could have prepared us as well as witnessing my father struggle with the disease first hand.

We started noticing his physical symptoms. While sitting still he was unable to keep his head steady. It would bob back and forth to a silent rhythm. Sometimes out of nowhere his hand would fly up from rest at his side, to up in front of his face. It became very clear that he could not control the sharp or the subtle muscle twitches that very often were outwardly visible. He also seemed to lose his balance very easily and decided to start using a cane.

We quickly realized that the reduction of stress played a very large roll in how his physical symptoms manifested. He left his work and gave up driving. He in some ways felt that he was abandoning his manhood and freedom, and resulting emotions were twisted as well. Everything was very hard on him. Most of all he was obviously frustrated with the new person he had physically become. Depression became very evident, enough so that he opted to go on medication to ease his ‘lows’. And after witnessing all of these things, we soon realized that it wasn’t the physical or emotional symptoms that were the most menacing and hardest for us to face.

 

We watched as our once moral and compassionate father, showed sides that we had never seen. His inhibitions, moral conscience, and logical thinking were vanishing. He became very selfish and the only emotion he displayed was anger. He became promiscuous, devious, rude, chaotic and unpredictable. We very rarely saw rational behavior, especially when he was spending money. And he never displayed any kind of remorse for anything he did that was obviously hurtful to others, including thoughts of suicide. The dad that we all knew and loved had been replaced with a new person: one that we couldn’t respect or trust. It was very hard to have sympathy for someone who very openly, didn’t seem to care. The behavior changes came so quickly that we could barely contemplate mourning for the loss of a certain aspect in our father, when the realization of another loss would interfere, over and over again.

And then the ‘plan’ that had been so carefully constructed before everything had come to the point that it had come to, changed. My mom could not function with the realization of my dad’s new lifestyle. She could not work, raise children, and stay emotionally stable, by constantly being aware of his latest antics. He was unknowingly making it very hard on her by disrespecting her and her efforts to maintain a healthy, caring relationship with him. And this was all so much out of his character that she really didn’t even know how to react to him anymore. She painfully decided that they needed to divorce.

 

There haven’t been very many happy family outings since. Being in the same room with my father would leave you vulnerable for an unexpected verbal attack. Being in the same room with my mother would leave you vulnerable for an unexpected emotional breakdown. It was hard, and we knew our family would never be the same. I found that the faith that my father had taught us children when we were young was barely holding the broken pieces of our family together. And hope seemed distant: hope that things might be different, hope that things might be like they were before the disease, hope that things might get easier, and hope that we would stand triumphant and honorable at the end of this trial.

I find myself telling everyone, if you could have only known the dad that I grew up with, the dad that taught me to play the piano, that drove me to soccer games and cheered me on in the cold, that swiftly came to apologize in tears after an argument, that would buy special junk food for our slumber parties, that would honor and cherish my mother and their relationship, that taught others about faith and Jesus Christ, that would invite the local transient home for a warm dinner and a job opportunity, that would sacrifice wearing holes in his clothes so that everyone else in the family could afford new clothing, that would work hard day and night to provide for his family (sometimes holding 3 jobs at once), that would edit my English papers, that showed us how to be patriotic, that taught us the sanctity of marriage and being chaste, that taught us how to set up tents and cook foil dinners, that taught us how to drive a stick shift, that was a knight in shining armor for his little girl that adored and admired him.

 

I know there is a purpose and a season for everything. But that doesn’t make reality of the present any easier, especially when trying to explain to someone that my dad’s Huntington’s behaviors are not who my dad really is, or was. Or when trying to understand why I tested negative for the disease, while others will test positive. And there isn’t hardly enough information out there to prepare you for and to lessen the blow of this disease. Each case is different as well as each family. Though I still experience fear, and because any kind of change is hard, I strive every day to learn more and prepare myself better for the things yet to come. And through my experience, this is what I have learned thus far:

Hope lies in the past, with fond memories. Hope lies in the present with your knowledge and in your support system. Hope lies in the future, with a cure. Hope lies in our faith, and in the love that will pull us through.

Here are some things that I have learned from Huntington’s disease:

Laugh a Little

Even when you have to be serious, a sense of humor can salvage an almost broken day.  When tension and stress are maximized, the light tug of humor can soften and ease the pain.  When my dad’s arm would fly up uncontrollably, he would wave his hand and say that he just wanted to say “hi”.  We couldn’t help but chuckle and smile.  Don’t forget to laugh, and look at things with a light-heated perspective.

Pray a Lot

Your faith, however perceived, can make up the difference where you fall short.  I believe that faith is hope, and hope can save a lot of things.  After all you can do, pray and truly believe that things will get better.  Our spiritual side can correlate with our emotional health.  And a higher power helps by filling in the gaps, strengthening our drive, motive and resolve.  I believe that a loving Heavenly Father, hears and answers our prayers, and will comfort and lighten our burdens in his own way and time frame.

Network of Support

No one can handle everything alone.  If we were meant to, we probably wouldn’t have been born into families, or have naturally come together in societies and groups.  Humans are social, and we help lift each other up and support each other.  Family is obviously crucial.  Parents, children, siblings, aunts, uncles, grandparents all serve supportive rolls in some way.  Friends, neighbors and others we associate with also support in distinct ways.  The web of support that we spin around ourselves can be our lifeline.  It can carry us when we feel we don’t have the strength for another day.  It can encourage us, strengthen us, guide us and applaud our strengths.  Professional counselors can also help us put our struggles into perspective.  And support groups help us to understand that others share in our grief and pain, in their own ways.

Constructive Outlet

Keep busy.  When you are working creatively or constructively on whatever project you choose, it will help you to resist from focusing on the mere difficult side of your life, and will open up your heart to positive alternatives.  And sometimes you just have to walk away:  everyone can use a little break now and again.  It is ok to leave your struggles for an evening, a day, or even a week.  Having a favorite place, activity, etc. can recharge your emotional batteries.  So if you are feeling empty and vulnerable to anger or other negative emotions, arrange to have your own personal uplifting time.

Personal History

Write it now:  where you were born, your family and friends, where you have lived, fun experiences and special occasions.  Add photographs.  A family who has happy visual memories to fall back on will be better equipped to endure the worst.  And it is a great family history opportunity to be passed on through generations.  It’s also important to understand who you are before Huntington’s disease, so that you have a clearer picture of who you will become with Huntington’s disease (even as the caregiver or family member).  If you were prone to angry outbursts, they may increase.  If you were anxious and timid, you may now be aggressive and forceful.  Stress usually changes most of us for the worst, so figure out what kind of person you are, so you can prepare yourself for the kind of person you may become.  

For Better or for Worse

Why do you think a marriage commitment brings this up?  HD definitely falls under the “worse” category.  The hard will get harder.  The pain will increase and emotional tension and heartache will test your bond.  Have good communication now.  Write things down, and strive to make every day the best that your relationship has seen.  And don’t forget your goals and strengths.

Unconditional Love

It is hard to love someone that is hateful, hurtful, deceitful and unfaithful.  This disease takes away an individual’s personality, but not their soul.  Dig deep into their whole being and love that soul, that person that you knew before the disease.  Love the person and overlook their actions because nagging and contention will only make you forget who this individual once was, and the ability to treasure that memory.

Reaching Out

Reach out to other families like yours who are suffering.  Find strength in numbers and in serving others.  Again, it is an opportunity to forget yourself and your woes for a moment, and think about what others are trudging through as well.

Giving Support

Be there for each other.  Voice your frustrations, but more often voice your love and affection towards your family and to those you care about and who are struggling the most.  Just like we depend on others for strength and support, we can also be that foundation to someone else.

Be Strong, Hang on to Hope, and Don’t Give Up

Patience can wear thin, but your strength comes from every fiber of your being.  Be strong for your family.  Be strong for the HD affected person in your life.  Be strong for those who grow from your experience and your strength – including yourself. 

To read more about Huntington's disease and our experience, including the treatment that has been helpful to my father, please visit his website: www.philliphardt.com

Wheat-free... one step at a time

I love to bake.  The problem is that I have learned that my body does not process wheat very well.  In fact, my bowels and my digestive tract seem to only function properly when I cut wheat completely out of my diet.  Before that, I had a lot of pain and discomfort and all of that other good (bad) stuff around my midsection, not to mention the dry patchy rashes I also got on my skin – mostly my upper arms.  And when it got really bad, it felt like a dry patchy rash lined the inside of my digestive tract causing a constant soreness and sharp pains as food passed through the whole… way… down. 

So obviously, I was soooo glad to figure out that wheat was the culprit... except that it meant that my whole diet would have to change.  And for any of you out there that have tried to bake or even cook with wheat-substitute flours – you know that it can be a challenge – especially if you are on a budget.  

So here enters Pinterest into my dilemma.  I’ve found that a lot of recipes posted on Pinterest are tried and true.  So almost 6 years into my “no more wheat” quest, I finally started to find some promising recipes.  Who knew that a pin board for just about anything could be the solution to my Wheat-free baking and cooking problem? 

Well, the start of the solution anyway.  A lot of recipes called for odd ingredients that are expensive and hard to find.  And some things just aren’t feasible if they cost an arm and a leg or if you have to travel across the world to get them.  However, the more I learned about different flours and leavening agents, the easier it became to recognize recipes that I knew would work AND what ingredients I could substitute to make the working recipe a feasible recipe for my circumstance.

Now, Wheat-free doesn’t always mean Gluten-free, but Gluten-free always means Wheat-free.  So Gluten- free recipes are always safe, but they never include ingredients that I prefer to use in my flour blends like regular oat flour.  And most things taste differently with different flours, so the rest of my family prefers to still eat wheat.  So I usually end up making two of everything, unless the taste and texture is almost identical – like with oat flour blender pancakes.

So for me, though this was a good and needed discovery for my personal health, it adds to the daily complications that I already get to monitor.  But you know, it is a lot easier to deal with daily complications when you feel healthy, than when you feel like you would rather curl up in a ball and stay in bed all day.  

So my quest continues as I learn and eventually find things that work for me!  Wish me luck… and continue to post your tried and true Wheat-free and Gluten-free recipes on Pinterest so that I can stumble across them!  I appreciate it!

Please visit my blog for more on my wheat-free journey:  www.wheatlovesmenot.blogspot.com

Hemophilia Symptomatic Carriers…Are You Out there?

I feel like I am on a roller coaster - up and down, up and down.  And did I mention that I don’t like roller coasters?  I get sick trying to do a cartwheel or doing a flip turn in the pool.  But any time I broach the symptomatic carrier topic, it starts all over again.

Does anyone else go through this?  I am a woman.  I am a hemophilia carrier.  I have bleeding issues.  They are not severe, usually, but I still have them.  When I go to the dentist, when I strenuously exercise, when I bump something pretty hard, and when I clumsily fall.  The bruises and bleeds come and I can feel them.  I can’t always see them.  But that isn’t good enough for my Hemophilia Treatment Center.  I guess they want me to look like a severe hemophiliac, swelling like a balloon to acknowledge that I am a woman and I bleed too.  But my son is moderate/mild, and he doesn’t normally swell up like a balloon.  We treat him with Factor IX when he feels a bleed coming on - I don’t have to see it to know that it is painful to him and that it affects his activity.  When he has a bleed we treat it.

So I found a different hematologist, outside of the hemophilia treatment center, to see if he would treat me like a mild hemophiliac…which technically, at 28%, my Factor IX levels should diagnose me as.  And that is what he told me.  He said, “You are a hemophiliac”.  Finally, someone heard me!  So my first question is…why are symptomatic carriers called symptomatic carriers instead of hemophiliacs?  Maybe if that changed we would be treated just like they treat the boys.  My second question is…if my factor levels are under 50%, which is the number they use to diagnose boys, why is my hemophilia treatment center so against giving me that diagnosis so that they can treat me?

Well, here is a snag that I’ve come upon, multiple times.  Each time my Factor IX levels are tested, a different number comes back:  sometimes as high as 78%, and sometimes as low as 28%.  So here is question number three…why does it fluctuate?  According to the nurse at the hemophilia treatment center, my numbers shouldn’t fluctuate – therefore I don’t have hemophilia.  I know, the logic is not there, but she stands by it.

So do you understand now a little bit of the roller coaster I’ve been on?  Not only emotionally up and down with people telling me that I am crazy for thinking that I have bleeding issues sometimes, and then finding out that I REALLY DO have bleeding issues sometimes, and then being told that I shouldn’t have bleeding issues.  What? 

But the roller coaster is also up and down physically with trying to engage in exercise programs and sports to stay healthy, and then having to be sidelined with a joint bleed (that I really am - but not really having).  For years I had to endure these bleeds without access to factor replacement.  And now, well, let’s just say my joints will never be the same.

So let me tell you some of the things I’ve noticed with my fluctuating factor levels.  As a teenager, I really noticed a lot more bleeds.  I started playing soccer at age 10, and had a few ankle “injuries”, but it wasn’t until high school soccer that I really began to notice the constant bruising and knee and ankle “injuries”.  Yes, high school soccer is a little more competitive and that may have contributed to the increase, but to tell me I did not have a problem and was not experiencing the bleeds is just downright rude.  I had to ice in a cold whirlpool sometimes before every practice and home game just so I could play through the pain.  If that is normal for a non-hemophiliac, then why weren’t all of my teammates also going through the same thing?  And that one time in practice after 20 minutes of working on roundhouse kicks – which led to a hip “injury” and two weeks on crutches – must not have been related to hemophilia symptoms either.  Not to mention my wisdom teeth extraction and two weeks of heavy bleeding, or the D&C surgery after a miscarriage and the excessive pain and bleeding for over a month.  I could go on and on.  My favorite is another hip "injury" after training for a half marathon.  I was literally down for three months.  It hurt to sit, stand, lie down, and walk.  Yep, the same exact hip that I “injured” in soccer years ago.  At that point I was fed up with the roller coaster and wanted to demand to get off. 

So besides noticing my bleeding issues increasing as a teenager, I also noticed that my levels seemed to fluctuate depending on my menstrual cycle and what time of the month it was.  And then when I went on birth control, it seemed that my bleeding issues almost went away completely, unless I missed a pill or took it late, and then it would seem like my factor levels dropped drastically for a short period of time.  So my fourth question is…could hormones play a role in Factor IX level fluctuation?  And if so, is it possible to calculate when my levels would be lowest and when they would be highest? 

With my last pregnancy, my new hematologist decided to test my factor levels regularly throughout the pregnancy, and then give me factor replacement therapy after delivery for two weeks after to reduce bleeding and to help me heal.  Sure enough, as my pregnancy progressed, my hormones increased, and my factor levels consistently increased, peaking at 78% right before delivery.  My obstetrician, last minute, decided to give me factor replacement right before my scheduled delivery.  So I received the factor, and eight hours later delivered my third boy.  They drew blood afterward and my levels came back at 28% (with factor still in my system!).  Really?  My factor levels can fluctuate that much within 8 hours – with factor in my system, and no one has thought that maybe we should figure out why?  Are there others out there like me? 

So here are some more questions:  Why is my case so different from any other symptomatic carrier (hemophiliac) woman with a bleeding disorder who’s factor levels don’t fluctuate?  Do they really know that they don’t fluctuate?  Have they tested thousands of symptomatic carriers (hemophiliacs) regularly over an extended period of time to compare data to?  I doubt it – especially because they won’t even diagnose any as having a bleeding disorder.  Why would a symptomatic carrier (hemophiliac) woman come to be treated and get her levels tested regularly if she is just going to be told the whole time that she doesn’t have bleeding issues, and that every bleeding episode in her life must have another explanation rather than hemophilia?  Yep, I’m going to ask it again…really?

I can tell you this, the two weeks of factor replacement after my last delivery made my recovery amazing.  I mean, compared to my other two deliveries:  night vs. day.  I’m not only talking about the amount of bleeding (that was so much less too!), but also the time it took to heal from the episiotomy and to just heal in general.  Wow.  If I knew it could have been like that before, maybe we wouldn’t have waited 10 years before having our last child.

So I’m asking…hemophilia symptomatic carriers – are you out there?  Let’s start talking amongst ourselves and compare stories.  Let’s start trying to figure out what the doctors refuse to.  If we have an idea of what we want to look for, like hormone levels compared to factor levels over a long period of time, then maybe we can go to our doctors and request it.  Or if there are enough of us out there tired of riding on the same roller coaster, maybe a factor company will have a research study done.  More diagnosed hemophiliacs mean more business for them, right?  I want to live in that kind of world, where if I want to be diagnosed and I have the symptoms, than I can.  And not only that, but then I can actually be treated for my symptoms too!  If research studies could be done, then there would be information out there for the doctors to finally realize that their textbook answers will not cut it when it comes to WOMEN HEMOPHILIACS.  The textbooks are wrong.  I say, let’s make history and rewrite the textbooks.  It is about time.

Are you out there?  Talk to your friends and neighbors.  Talk to your treatment centers and factor companies.  If we work together, it will be a lot more effective than just one voice on a blog. 

I’m ready to be heard! 

I’m ready to walk on solid ground!

Will you help me spread the word?

comment below or send to comments@michellebooks.com