Saturday, October 31, 2015

My Adventures in Weight Lost @ Weight Watchers Week 74

Happy Halloween!

Especially for me! I lost this week. 1.4 lbs to be exact. Yea, I know, I'll probably gain it back next week. Especially after I have to deal with all the free candy that's gonna flood my house tonight. But it's Halloween, I refuse to let myself be negative.



Weight: 184.4 lbs.

Thursday, October 29, 2015

Precious Moments

Gabby and AJ

Crysal and Jenn's daughters.
I'm really not sure where to begin. Alexander--Aj-- was born a perfect little pumpkin. He..yes, he...was the light of our lives. A few months went by, and I knew something was different. It wasn't until he was almost 2 years old that we finally got a diagnosis. It was MeCp2 male....aka Rett syndrome. So I did what everyone does now...went to the internet and researched. I dropped to the ground. I had no idea what to expect. I actually still have no idea what to expect. Our lives were now on a completely different path. We were on a mission to find out all we could about this....but in the process, I was missing out on him. I don't want to say I have given up on finding out information, but I have just been spending time with him...doing things, like playing football, swimming, traveling...then I met crystal and gabby. This was the first family I have met that got it. I didn't have to say sorry about the machines, and I could have a conversation about what our kids liked and our love for minions. Both AJ and gabby have taught me how precious life is and to never take one moment for get out and experience life and treat everyone with respect and kindness.

Crystal (Gabby's Mom) & Jenn (AJ's Mom)

Wednesday, October 28, 2015


I wrote and rewrote this. I've didn't really debate what I wanted to say, so much as how I wanted to say it. Even now she still she inspires me.  As my condition has worsened over the past  few years I've lost my mobility and have had trouble communicating.  Not only is it frustrating to have one's body betray you, it's immensely embarrassing to have people assume things about you when you misspeak or can't speak at all. I have days that I'm sad to say I refuse to leave the house because I just don't want to deal with it. Honestly I'm ashamed of myself for it. I can still get about on most days. I can still talk. Gabby, for most of her life couldn't. But she still loved going places. She still loved to have people visit. She laughed and enjoyed life.
I'm ashamed because I think if she had suddenly found herself with my physical problems she would have been overjoyed. To be able to speak, even if it wasn't always perfect. To be able to sit up on her own. To read out loud to her mom, instead of Crystal reading to her.  To simply be able to hug her mom and dad and tell them how much she loved them. 
Over the past few years, the times have increased when I really don't want to get out of bed, much less leave the house and I just hide in my room all day.  I turn down invitations because I'm afraid of doing something off, or worse not being able to do something I used to be able to. Those are the times I remember Gabby and her joy for life, even in the simplest of things. I feel horribly ungrateful for what I DO have and what I am able to do.  I remind myself to enjoy every moment I can.  I share Gabby's story, and the stories of the other Rett's girls and their families that I've been fortunate enough to meet.    I pull myself together and take advantage of what I can do.  I go out because if Gabby, or any of the other Retts sufferers, could go they would  and would love every minute of it. I tell their stories because I can and I hope that the more people that learn about Rett's Syndrome the more people there will be that will want to help make a difference for those who suffer from it.  

Prizes for the Readers for Rett's Syndrome Awareness Event 2015

Ok, this year instead of sharing each giveaway individually at the Readers for Rett's Syndrome Awareness event we've decided to just share a link to this post. That way everyone who is attending can just see all the prizes that we are making available for all to who attend can see them all in one place.  

Ok the rule for this year's event giveaways are simple. 

-You must attend the event to qualify for the giveaways.

-Anyone who comments on any of the posts at the event or on any of the blog posts for it will be automatically entered in the giveaways.

-Also the more comments the more entries.

-Another way to enter is to change your profile pic on Facebook to the Readers for Retts Awareness Event picture. Once you do change your profile pic on Facebook if you could please comment on here letting me know that you have changed the pic. This isn't necessary to enter any of the giveaways, however it will just make it easier for me to verify it. 

-One more way to enter: Invite your friends to the event. I will be posting a status on the event page for people to let me know who invited them. Not only will your friends attending be an entry to the giveaways, but also the person with the most invites will automatically win one of the prizes available. 

If you have any questions regarding the event or the giveaways please feel free to ask me or Heather, the other host of the event. 

Now on with the prizes available this year:

Prize Pack #1:

The Jewel of Grim Fortress: Episode #1

Prize Pack #2:

Highland Flames
Guardians of Cridhe
Seven Historical Highland Romances
Authors Include:
Ceci Giltenan
Tarah Scott
Lily Baldwin
Kate Robbins
Sue-Ellen Welfonder
Kathryn Lynn Davis
Victoria Zak 

Prize Pack #3:

Prize Pack #4:

Prize Pack #5:

Prize Pack #6:

Swag pack provided by Ariel Burnz
Pens, Earrings, Trading Cards and Post Card

Prize Pack #7:

Prize Pack #8:

Prize Pack #9:

Prize Pack #10:

Prize Pack #11:

Prize Pack #12:

Prize Pack #13:

Prize Pack #14:

Prize Pack #15:

Prize Pack #16:

Prize Pack #17:

Prize Pack #18:

*Print copy to any U.S. resident
E-copy for International resident

Prize Pack #19:

 A bag from the InD'Scribe Convention 2015 signed by the authors in attendance.(as well as some who weren't!) Along with an InD'tale T-shirt (size large) and a whole LOT of swag from the convention as well that was also donated by the numerous authors                                                                          at the event.

Also I want to say thank you to all the amazing authors from the InD'Scribe Conference who donated items to the giveaway! Especially since the books and swag I received at the convention were donated without me even asking. Yes, I asked them to sign the bag. But before I knew it the bag was overflowing with items put in it by the kind authors at the event. Also the wonderful coordinators of the event were willing kind enough to donate the bag as well as the shirt. 

Honestly the generosity of the authors and coordinators of the event blew me away. Please check out my thank you post here that I put up when I got home from the convention. Feel free to say thank you to them as well! 

Tuesday, October 27, 2015

Reader's For Rett's Awareness Event ~ 2015

Tomorrow is the Readers for Rett's Awareness Event 2015.  As before this years event is centered on bringing together authors, readers and Rett's families to help raise awareness for Rett's Syndrome. 

This year the event is being dedicated to the girl who inspired the event in the first place, Gabby Jankowski. We will be sharing memories of her, as well as stories of the other Rett's children who suffer from this horrible condition.

As with last year we will also have some amazing giveaways for the attendees of the event. I will be sharing the prizes available here since it's just a bit easier to share them all at once and I will put a link to that post here as soon as it goes live. 

For those of you who dont' know anything about Rett's Syndrome here are some quick facts.

What is Rett Syndrome?

—Debilitating neurological (movement) disorder that predominantly affects females.
—Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old.
—Caused by a single gene mutation that leads to underproduction of an important brain protein.
—The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.
—Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.
—As prevalent as Cystic Fibrosis, ALS and Huntington's.
—Another little girl is born with Rett Syndrome every 90 minutes.
—Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

A special thank you to the Rett families joining us and sharing your stories. You children truly are warriors.

And a final thank you to graphic designer Zackary from Raven Tree Design for donating his time and creating the graphics for the event.

Tuesday, October 20, 2015

An Open Letter From a Person with Mental Illness...

I was inspired to write this letter from a letter I read on the Huffington Post by Rachel Griffin titled An Open Letter to a Person with Mental Illness. I really appreciated it, and I wish that more people were as open-minded and caring when it came to mental illnesses. But I also wanted to give the viewpoint of how a person with mental illness sometimes sees the world. I'm not saying my own viewpoint is how ALL people with a mental illness see their world, nor do they see it this way all the time. But I'm hoping that it will possibly help people who have friends and family with mental illness understand why sometimes people with mental illness shut down and shut them out. To not take it personally. To not hold it against them. 

Dear Perfectly Healthy, Completely Well-adjusted Members of the Human Race:

On my good days, I know I'm not a monster. I know I'm not worthless and I have amazing things to offer the rest of the world. I know that without the mental illness I suffer from I wouldn't be able to appreciate the little things that really make this world beautiful.  I wouldn't care as much about others as I do.  I wouldn't be able to understand when they're on edge, or have already fallen over, and I hate to say it but I don't know if I'd be as willing to try to help pull them back. I'm willing to accept help when it's offered and I'm not afraid it will make me look weak or foolish or 'crazy.' 

On my good days, I understand my illness is just that, an illness.  It isn't what defines me. I can understand the medical reasons why it makes me feel certain ways and have certain thoughts. I feel resolved that I, with the help I get from my therapist, my friends and family, my other doctors, and the therapy and medication I have, that I can handle my illness. That no matter what situation occurs, I can get through it. 

On my good days, I'm inspired to take on the world. To write, to share my ideas, to organize events, bring people together to make the world better at least in a small way. I can take on the critics and the trolls. The former I am able to see from their point of view. The latter I can ignore completely and let it roll off my skin or, and this is always fun, I can reply to their asinine comments with wit and intelligence. Then laugh about it with my friends. 

But on my bad days....

On my bad days, I can't find a reason why I am of any use to anyone. If I'm anything, I'm a burden and a bother to all those around me. I want to sleep, because maybe when I wake up, I will be able to think of a reason why I'm not. Because if I stay awake, my mind plays over and over all the things I've done wrong. All the things I've said that I think I shouldn't have said or that I now don't believe I had the right to say. It not only tells me about all the terrible things I've said or done, but it also reminds me of all the terrible things that have been said to me.

I think I'm lazy, worthless, ugly, stupid and crazy. And my brain reinforces these ideas by replaying every word that someone, who has said they loved me, has told me.

That I'm crazy. That I use my illness as an excuse. That I'm stupid or wrong. That I'm not a ten, or how I looked like a white trash soccer mom that one time when I went to the store sick because it couldn't be avoided. Of course my brain leaves out why I went to the store with a stain on my shirt, but it can replay word for word the white trash soccer mom part. Hell it's so good it even mimics the voices of the people that said these things perfectly.

And then it tells me, "See you are a failure, a disappointment, you are a freak and you shouldn't bother people with your problems."

It tells me, “That’s why people don't answer me, why they don't call, why they don't talk to me anymore.” Because I've obviously whined about my stupid little problems so much, when there are people with actual reasons to be sad or upset out there.

Because if I wasn't such a miserable failure at being a human that I would’ve actually been worth something to the guys I've shared my heart with, and they wouldn't have cheated on me, wouldn't have said I was crazy or stupid or fat, wouldn't have hit me or threatened me. I would have been good enough to deserve their love. But obviously I'm not because if I had been, they wouldn't have done any of those things.*

On my bad days, it's like I'm in a room where all the lights have gone out and I can't see anything bright around me. I can't find a reason to keep going. Because if I do all I'm going to do is at best  drive everyone who is nice enough to put up with me away. At worst, I'm going to just mess up the heads of the people around me too.

I know mental illness isn't contagious, I'm not that stupid. But I know sometimes people don't understand my illness isn't something they caused or have any control over, and I know not being able to understand that can make a person have issues about how they are. They begin to think they aren't good enough because they can't make me smile. Because they don't know what to say. Don't know what to do. Sometimes the guilt I feel over the heartache and stress my illness causes those around me... It just makes me hate myself more.

And that's the thing, it's not my illness I hate on my bad days. My illness has commandeered my inner voice and convinced me that my illness is me. So I don't hate my illness, I hate myself for being weak and not being strong enough to keep the darkness at bay.

On my bad days, all the meds, all the therapy, all the mental tricks and tools I've learned to get through them, all the positive people and things in my life... They don't make it better.  My illness twists it around in my head to make me feel guilty for wasting their time. For not being strong enough to keep it together. 

The most evil part of my illness isn't what it does to me. It's the fact that it is truly a manipulative genius. Not only is it great at turning me against myself, it's great at hiding. Not only can it hide itself from me, but from everyone else as well.

For example, I was at a meeting with friends the other day. The leader had an exercise where we wrote down on one of those yellow sticky notes something we believed about ourselves.

Up until that moment I had been having a pretty good day. My physical pain was under control. I was laughing and smiling. I had things I was looking forward to later that day. Then came the time to write on our sunny little papers. I didn't even think twice about it as I wrote "I'm ugly." I mean honestly it kind of surprised me because I hadn't had a negative thought all day. I mean, yeah, it was early in the day, but still.

But here's the thing, I didn't just mean I was physically unattractive on the outside. As I read what I wrote, I felt I was ugly on the inside as well. That because of my mental illness, my inside was just this black, slimy, goop. And at that moment, I suddenly utterly and completely believed it to be true. Out of nowhere my illness had taken over my day and turned it black and sad.

Of course I showed no one what I had written. I continued to smile and make small talk. I then went home, cancelled all my plans for the day, and hid in bed. Then the next day, my illness reminded me I had blown off doing a bunch of stuff I really had needed to do and how much of a piece of shit I was for that. 

I worry as I write this that the people who read it will think I'm completely crazy. That I'm obviously beyond helping and should be locked up away from society so my darkness won't dim the rest of the world. I worry that the people who actually know and care about me will get angry because they think that I don't appreciate the things they do. I worry that they will think back on things they've said or done and think they need to now walk on eggshells around me because they don't want to be the one that "pushes me over the edge." 

Well don't. I have an illness. I'm not contagious. Yes, the things people do and say can hurt, but it's my illness that makes them seem like the end of the world. If everyone around me constantly edited everything they said or did around me it wouldn't help me. It would make me feel like even more of a complete loser, that I had to be babied all the time. 

I do have some advice for those who have a person with a mental illness in their life. 

First and foremost: WE ARE NOT OUR ILLNESS. 

Now for the rest...

--If we do feel comfortable enough to admit we have a mental illness and are willing to discuss it, it means we feel comfortable around you. Sometimes we don't always trust the right people. But even people without a mental illness make that mistake too. So if we tell you, especially if we've been burned before, take it as a compliment. Appreciate it. We're not telling you to get sympathy or special treatment.

We're telling you so that, when that illness is overwhelming, you will understand it's not you, it's us, and it's not even truly us, it's the illness. We tell you because we understand that we lash out at people when we are having bad days and usually it's the ones closest to us. We're telling you because we are hoping you will be understanding and not hold our illness against us. 

--Sometimes when everything is dark we will ask for help. If we're willing to risk rejection to ask, please don't ignore it. Because sometimes it's not that we won't ask for help, it's that our illness has convinced us we don't matter enough to ask. So when we ask...and you don't just helps the illness reinforce that thought.  Even if you don't know what to do or what to say. Just having someone ask if we're ok, or if they can do anything to help actually helps. Even if we say we're fine or say there's nothing that can be done, it helps to undermine that illness's voice. Because we can fight it by saying "Look they care or they wouldn't have asked."

--Google it. Research whatever mental illness it is that the person you care about is suffering from. Don't just assume that if someone says they have depression or are bi-polar or have anxiety, or any of the other numerous conditions out there, that they are whatever stereotype you have seen or heard about.  Because remember, people don't talk about the manic depressive who takes their meds and goes to work and therapy and lives a normal quiet life.  They talk about the person who didn't get help.

The person who lost it on the subway and started screaming at people that weren't there. The one who sits on the bus bench rocking back and forth who lives behind the local strip mall. The one who was found hanging from the rafters. Or even worse the one who hurts other people. Those are the ones who make good news stories, who sell newspapers, make 'interesting gossip.'

Find out what the illness actually is. More importantly don't just blow it off. Most people who suffer from any form of mental illness are experts at hiding it. We've been shamed over the years into thinking it is a weakness in ourselves that caused it, that we are 'lesser' people because of our illnesses. When in reality we are not weak. It takes an incredible amount of strength to not only make it through the darkness, but also to be willing to ask for help when we can't. To be willing to admit it's not just a bad hair day and to test different medications and therapies because the first ones don't always work. To keep trying, because we know we want to be able to have more good days than bad days.

--Even go so far as to ask that person about their illness. How the illness affects them on their bad days and their good ones. Learn what the symptoms and the signs are.

Don't be afraid of us. Don't be afraid of saying the wrong thing. Understand that when we're in a really bad place, yes our illness will remind us of anything negative you've said. At those moments when we say "You think I'm crazy," or "You think I'm dumb," it doesn't matter when or why those things were said. Our illness will use whatever it can to convince us we are broken and horrible.

I know it sounds kind of silly, but we need to be reminded that you don't actually think these things about us are true. Some of us NEED to hear it. Even if at that very moment it doesn't seem to make a difference, I can tell you it does. Yes, you might have to repeat it a thousand times. It will seem like it never gets through. But we do hear it, no matter how seemingly insignificant it seems, it helps.

Don't worry, if you have nothing to say or you can't convince us to go out that day. Yes, getting out of our beds and out of our own heads is beneficial. But some days we just need to stay in. It's not wallowing in our own misery. It's simply because on bad days, it is extremely tiring to fake that we're not having a bad day. Sometimes it's really hard to be around people who don't seem to have a care in the world and are always happy. It makes us feel even worse that we can't just flip a switch and make the illness go away. Those days...just be understanding.

Let us know you're there, that you love us just the way we are, remind us of why you love us.  If you're worried that it might be that dark day, then just sit with us. Order indulgent takeout and watch pointless TV shows or movies.  Ignore our negative comments and just be there. Even if it's on the phone or online. 

--If you think we might need help, tell us. But don't get mad if we get upset. It's hard to hear, it helps the illness make us feel as if we've failed even more in fighting it. Yes, we have bad days, but we have glorious amazingly wonderful days too. On those days, we remember those who were there and we do remember what we've done on those dark days.

I'm not saying that all of us will apologize for our actions. Because it's horribly embarrassing to have to acknowledge how far we can fall. And some mental illnesses take our memories as well as our light. But know that some of us do remember those who were there, that it does matter, and hopefully we will know that you only were in the line of fire of our anger because you cared about us and that we will be able to apologize and thank you without worrying about you hating us for something that we can't always control. 

--Don't be afraid. The majority of people with mental illness aren't violent. They don't "hear voices." They aren't psychopaths who kill and eat people. They don't shoot up schools. 

The majority of us, we hide because of fear of ridicule. Because we don't want people to assume we're going to "lose it" and should be "locked away for our own good."  Because we're tired of hearing, "We just need to get over it" or "We're just being over dramatic.” Because we don't want to be looked at like we're damaged or ostracized because of an illness. 

The majority of us spend our good days like everyone else. Our bad days, we spend curled up in bed hating ourselves for not being able to make them into good days.

Also remember that not every person with a mental illness will handle their illness the same way or have the same exact textbook symptoms. Some people self-medicate with drugs or alcohol. Some have a better handle on their illness, they have a better support system, or have been lucky enough to have found a therapy or medication that works well for them. All of them are just trying to get by as best they can.  

--Last of all, if you know someone with a mental illness and you can't see past it...Then just go away.

Stay away. If you're going to hold it over their heads and tell them you're better than them. If you're going to be an ass and then when they get angry or upset say that they are 'over-reacting’ because they're crazy ', when their reaction is the same as someone without a mental illness.

If you're going to hold every bad day against them. Yeah. Just walk away. Because while treatment and understanding of people with mental illnesses has come a long way in the past hundred years, the stigma it carries in public opinions amazingly hasn't.

While a person with a mental illness is no longer automatically thrown into a sanitarium, given electro-shock therapy, or worse lobotomized, they still are widely looked down upon by society in general. 

People who suffer from depression are still blown off, told to "Cheer up and get over it." People who have anxiety disorders are "Attention seekers or need to suck it up." People with bi-polar disorder are kept at arm’s length. "Never know what might set them off." If they're upset or angry, they are almost always "Over-reacting and need to get a grip"

Pretty much any mental illness is still hidden in the family closet. Like alcoholism was years ago, it isn't talked about. No one mentions it, and if they do it's whispered in hushed voices that convey such a sense of shame and embarrassment that the person who suffers from it is reminded what a blight they are on their family tree. 

If you're still one of those people who think a mental illness is just an 'excuse' or those who suffer from one are 'damaged goods.' Yeah, just go.   

Because you know what? We aren't.  As Rachel said in her letter, “We are not monsters. We are a valuable, unique, wonderful human being who deserve everything grand that this life has to offer. We are not damaged. We are whole, regardless of having a mental illness." 

And while at our darkest times we don't believe it. It is still true. 

I hope if you are reading this, and you know someone who suffers from a mental illness, this letter helps you to understand them just a bit better. I hope it helps you to know why that sometimes, no matter how many times you tell them you love them or how great a person they are, they still don't believe you. That even though they don't, it doesn't mean you should stop or give up on them. You're willingness to accept them and love them, illness and all, is one of the greatest gifts you can give them. That, even if they've never said it, they appreciate it and love having you in their lives too.

Again I'd also like to thank Rachel Griffin for writing her letter. It means a lot to be reminded that there are people out there that think the way she does and aren't afraid to say so.

* I want to mention that not ALL the people I've been in a relationship with have done any, or all, of these things to me. Because they haven't and I don't want people to assume because I'm no longer with someone they are an asshat.