Not an Entertainment Director (Careful - this is a rant.)

{steps onto soapbox.}

I am a lot of things. Ask my friends and family. I am sure they all have lots of names for me. 

I have the standard titles: Wife, Mom, Daughter, Friend, Cohort, Coworker, Geek, Nerd, Pain in the butt, etc. However, my kids are over 18 now and one is married and expecting his own kid soon. I stopped being an entertainment director years ago.

Unfortunately, one of those moments, where you just want to table-flip the hell out of something happened this morning. Well, ok, it started last night. I was being polite and informed someone that I am going to go spend a weekend playing with my friends next month. Nothing huge, go down on Saturday, spend the night, hang out for a bit on Sunday then go home. I am making the commitment to go to Sacramento’s Pagan Pride (http://www.sacpaganpride.org/) as I haven’t been able to go for a couple years and am getting really tired of missing it. I’m dragging my husband with me, because well, that’s what he signed up for when he married me almost 25 years ago. He goes where I go, most of the time. (I’m not that heartless.) But, I am not, repeat AM NOT, responsible for anyone else. Not even my kids this year. If they want to go, they can find their own way there. My daughter and her friends will be at Yaoi-Con (http://www.yaoicon.com/); her fiancé is livestock sitting for me that weekend. All my bases are covered. (Mind you, I live almost 60 miles from it.)

Or so I thought. Sigh. There are people in my life that do not believe in my way of thinking, do not share my faith. That’s cool. I’m okay with that. I don’t force it down their throats or try to convert. Not my place. As long as they are happy with their faith, that works for me. If you want to know about mine, ask; I’ll answer the best I can as I am still learning all the time. However, there are a couple that seem to believe I am their social director. That I should have included, invited, planned their weekend for them. Sigh.  This morning I have to deal with the crap, the pouty, pissy, moody, crap, and I know where it stems from – peeps are feeling like I purposefully left them out and I don’t want them around. Whatever.

Now, I have no problem with these peeps joining us. They have their own vehicles, they have their own lives. If they choose to come down for a day and join us at Pride, then cool, great, whatever. However, if you get pissy with me because I didn’t include you in my plans? I am gonna table flip the hell out of something. Seriously? If you are over 18, you can make your own plans and do your own thing.

I get really tired, frustrated and annoyed at those people I meet and know that bitch about not having anything to do, or friends to do it with, or whatever. Get off you lazy butt and go find some. They will not, I repeat NOT, come knocking on the door asking if you can come out and play. They probably don’t know you exist. Why? Because you do not put yourself out there.  

I do things because I need to go out and have fun while I can. With MS, I could be in a wheelchair in a few years or hell, next year for that matter. If I want to take a walk, I’m going. If I want to walk a 5K? Yep, you bet your sweet ass I am going to go do it. You can come with or not. You will not, however, bitch at me for doing it or wanting to do it and you will not get mad at me if I didn’t schedule it into your calendar for you. I’ll give you plenty of notice. If you want to go with me or be there or whatever, it’s of your own free will. I have too much to do and plan for with MS mucking up the waters than to have to worry about your adult ass, too.

You are not tied to a chair, handcuffed to a bed, or under house arrest. Do it your own damn self. The only person responsible for your bloody happiness is yourself. I tell myself that in the mirror every damn morning then I put on my big girl panties and combat boots and head out to defeat the day. Or, I try to. I understand that there are days I won’t be able to do much, but again, that is my decision, my issue, and my pain. Yes, I appreciate some of the help I get, if I need it, I will ask for it and when it is given I try to be gracious about it. My guilt at needing it is mine. BUT, I never assume I am going to get it or that it is due to me automatically.

Oh, and you are not Grumpy Cat, try smiling once in damn while. You might activate a few endorphins and actually be moderately happy for once. 

 {jumps off box}

The Rising Issues of Mental Health

With Robin Williams’ death comes another wave of discussion over mental health care in our country. Are we doing enough? Is the stigma disappearing? How does it come to this? What does this all mean?

Well, as the wife of an amazing man who happens to suffer from the diseases of Bipolar Depression and Post-traumatic Stress Disorder, I’ll tell you. The answers of those questions are: No, No, easily for those suffering with depression, and only those people know.

Depression is a disease. It isn’t a stigma. It isn’t leprosy. It doesn’t brush under a rug and go away. It hides behind endearing smiles, captivating conversation, and energetic activities. It hides in dark rooms, under pillows, quiet times, and is deadly. It strikes when you are weak and hits like a brick. You can’t dodge it, or hide from it, or definitely, you CANNOT ignore it. It’s an evil fog that encapsulates its victim, then spreads out to try and trap those around them.

You know the saying, only the strong survive, yes? Well, even the strong can collapse with depression. It can dissolve your ambitions like acid. Everyone has a breaking point. It is what happens when you are at that point that can make or break it.

Depression is an invisible disease. I call Depression an invisible disease because sometimes even those closest to the individual don’t notice until too late.  People suffering from this disease are no different than those afflicted with other invisible diseases. It is no different than Fibromyalgia, Multiple Sclerosis, Lupus, etc. The individual has it, but most people can’t tell until it is so severe that there is no turning back. Depression has an advantage though, with the correct medication, support, love, kindness, help, and direction, most people can survive it, fight it, and live through it. Sure, they don’t look sick, but seriously, never judge a book by its cover.

Fighting Depression is a constant battle. Every moment, every thought, becomes a target and a fight. I’m dumb, fat, skinny, ugly, stupid, worthless, unneeded, a blemish, an anchor to my family, or a disgrace. The absolute fact is that you are NOT dumb, fat, skinny, ugly, stupid, worthless, unneeded, a blemish, an anchor to my family, or a disgrace.  You are smart, beautiful, amazing, friendly, fun, needed, loved, and special. You are a significant part of your friend and family circle. Without you, they would not be complete.

Depression is a bully. Beating you up and taking your sanity like your lunch money. It wants to stuff you in a locker, give you a wedgie, and put tacks on your chairs. Don’t even mention the mental swirlies that it gives you. Stand up to your Bully. Gather your friends and family and back that jerk right back into his box. Hulk Smash that bitch.

This has gone on long enough people. Mental Health is nothing to stick your nose up at and ignore. It is something painful that requires special attention. You fight it by being supportive, observant, and sincere. I know from my own experiences with the Big D that I need to have someone I love or respect tell me to put on my big girl panties and step up. It’s hard. It truly is.

Depression insinuates itself into your head and makes you think that you are a burden to your family. You are dragging them down. It would all be better if you just weren’t around anymore. Your family would move on and be better off. What you don’t believe, understand, or realize is the carnage you leave behind in your wake when you get to the point of suicide. You can’t, won’t, or don’t let your family do what they are there for, to love you and help raise you up. That is why they are there in your life. They aren’t pretty fixtures you need to dust. They are hard working, loving, caring, bully-destroying, kick-ass, cheerleaders, and supporters of everything you do in your life.

Your faith, yes, your faith can help as well, but it is the loving people in your face telling you to get up, take another step, expressing their love for you, and yes, tell you to put on your big kid underwear and combat boots, baby, cuz you are doing battle. The cool thing is, if you look to your sides, you realize that your family and friends are right there with you in this battle. Their love and commitment to you is your super power against the Big D. You can’t let it win. Please don’t let it win. The wreckage left behind takes forever to clean up and sometimes, it is never clean. Sometimes there is no recovery. And the circle begins again.

Break the circle, go Super Saiyan on that bitch. Tell it to back the hell off because you have things to do, people to see, memories to make, and people to love.

Sure, sometimes that person thinks they have no one to reach out to, but honestly, there are tons of people, groups, and support out there to stretch out a hand to you and give you a hug. For no other reason than you are just you. You are valuable. You have life experiences that can educate others. You have opinions, needs, desires, and suggestions on how to help others. You are amazing. Don’t ever let anyone tell you different.

I know this post sounds like a lot of BS, but honestly, I live with the Big D every bloody day of my life. It crawls into the crevices of my brain trying to undermine my control. It’s a constant battle. I have Multiple Sclerosis, that’s enough junk in my system trying to mess with me, I don’t need Depression coming to the party. The Big D was NOT invited.

I live with a loving and caring man that deals with this daily as well. We help and support each other. It’s all we can do. This isn’t a single-player game, peeps. This is full contact, multi-player, team defense.

There are tons of places out there for help. You can call any of the resources below or visit your local shelter and talk to anyone working there, I am sure if they don’t have the expertise to help, they know someone that does. Plus, I am sure the hugs are free and you should never be afraid of crying. Crying releases toxins in your body. So, cry away, get that crap out of your body. Don’t believe me? Go here: http://psychcentral.com/blog/archives/2009/06/06/7-good-reasons-to-cry-your-eyes-out/

Just take that first step, please.

Maybe some of this can help:

http://www.suicidepreventionlifeline.org/

Call 24/7 - 1-800-273-8255

For Young Adults: http://www.youmatter.suicidepreventionlifeline.org/

http://www.veteranscrisisline.net/

Veterans and their loved ones can call 1-800-273-8255 and Press 1, chat online (http://www.veteranscrisisline.net/ChatTermsOfService.aspx), or send a text message to 838255 to receive confidential support 24 hours a day, 7 days a week, 365 days a year.

American Foundation for Suicide Prevention

http://www.afsp.org/

National Institute of Mental Health (Also a great place for any info on Depression.)

http://www.nimh.nih.gov/health/topics/suicide-prevention/index.shtml

Amazing help for Teens and Young Adults for Depression or Addiction Services:

http://www.teenhealthandwellness.com/static/hotlines

Suicide Hotline: 800-784-2433 
Immediate Medical Assistance: 911 
Crisis Call Center: 800-273-8255 or text ANSWER to 839863 

Crisis Call Center
800-273-8255 or text ANSWER to 839863
Twenty-four hours a day, seven days a week
http://crisiscallcenter.org/crisisservices.html

Depression and Bipolar Support 
800-273-TALK (8255)
Twenty-four hours a day, seven days a week 
http://www.dbsalliance.org

National Hopeline Network
800-SUICIDE (784-2433)
800-442-HOPE (4673)
Twenty-four hours a day, seven days a week
http://www.hopeline.com
        
Crisis Center and Hotlines Locator by State
http://www.suicidepreventionlifeline.org/getinvolved/locator

Suicide Prevention Services Depression Hotline
630-482-9696
Twenty-four hours a day, seven days a week
http://www.spsamerica.org

Thursday’s Child National Youth Advocacy Hotline
800-USA-KIDS (800-872-5437)
Twenty-four hours a day, seven days a week
http://www.thursdayschild.org

Your Life Iowa: Bullying Support and Suicide Prevention
(855) 581-8111 (24/7) or text TALK to 85511 (4–8 PM every day)
Chat is available Mondays–Thursdays from 7:30 PM–12:00 AM
http://www.yourlifeiowa.org

Depression and Bipolar Support Alliance:

http://www.dbsalliance.org/site/PageServer?pa

30 Things About My Life with MS

I was referred to a site called butyoudontlooksick.com and I saw this article for Invisible Illness Week and since World MS Day was May 28th, I decided to do my own version of 30 Questions:

1. The illness I live with is: Multiple Sclerosis and all its friends. Fibromyalgia, chronic migraines, and cold urticaria. 

2. I was diagnosed with it in the year: I was diagnosed in 2014 after years of testing. 

3. But I had symptoms since: If I look back, I’ve been having symptoms for 10-15 years now. 
4. The biggest adjustment I’ve had to make is: Taking a break and learning to say no/ask for help.

5. Most people assume: that I have just hurt my foot or some other body part and it will heal and then I’ll be “all better.”

6. The hardest part about mornings are: Pulling myself out of bed. I spend about 15 minutes just trying to move to get my appendages to support my weight or pull me out of bed. So easy to just lay there. 

7. My favorite medical TV show is: I don’t really have one. I tend to gravitate more to the fantasy/SciFi genre. If I watch anything with a “medical” piece, it’s CSI.

8. A gadget I couldn’t live without is: My folding cane. It helps me walk, reach things…and I can fold it up and put it in my bag when I don’t need it. I try not to rely on it too much. I have a wheeled/seat walker that I use for long outings, but I really couldn’t live without my phone/tablet. Keeps me connected and independent. 

9. The hardest part about nights are: Trying to get comfortable. Either too hot, too cold, or the most comfy position starts to hurt, insomnia. 

10. Each day I take 19 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: have tried whatever has come my way. I figure why not? Not everything works for everyone, but then what doesn’t work for one, may work for someone else. 

12. If I had to choose between an invisible illness or visible I would choose: I’d stick with this invisible one. There are days when I wish I had something I didn’t have to explain, but then I have a pretty big mouth and can advocate and discuss. 

13. Regarding working and career: I enjoy staying busy, but commuting to work every day is difficult. I continue because I need the health care and the paycheck, but someday, I’ll be able to retire and stay closer to home and do something I really want to do. 

14. People would be surprised to know: that I fight with depression all the time. It’s a never ending battle keeping a hold on the spiral and staying moderately happy. Some days, my happy exterior is all done with smoke and mirrors. 

15. The hardest thing to accept about my new reality has been: Not being supermom. I have to ask for help and accept that there are things I cannot do anymore and days when I can be great one second and horrid the next. 

16. Something I never thought I could do with my illness that I did was: Fly in a zeppelin. Awesome fun. 

17. The commercials about my illness: What commercials? There aren’t many for Multiple Sclerosis. 

18. Something I really miss doing since I was diagnosed is: reading in the car and spending the day outside. 

19. It was really hard to have to give up: doing things on my own. I loved being independent. Now, it is a rare moment that I can do things on my own. 

20. A new hobby I have taken up since my diagnosis is: Photography. My diagnosis made me choose to do things now.  I love photography, I will be taking classes on it to learn everything my camera can do, but I enjoy capturing everyday beauty and the odd things here and there. 

21. If I could have one day of feeling normal again I would: Go ride roller coasters all by myself. 

22. My illness has taught me: to slow down and take things in stride. It has taught me that there is no shame in asking for help. 

23. Want to know a secret? One thing people say that gets under my skin is: having to explain what MS is. I get a lot of blank stares, weird responses, etc., it gets very tiring having to explain it all the time. Or, finding someone that “knows” what it is but getting “Oh, I know someone (my aunt, dogtrainer, etc.) that has MS, they cured it with xyz cure (gargling with magma, chewing twigs, whatever.) You should try that.”

24. But I love it when people: try to understand and step back and let me live my life. If I need help, I’ll ask, but I love it when people enjoy things with me instead of keeping me from it or hovering. 

25. My favorite motto, scripture, quote that gets me through tough times is: Hope. I adore “The only thing stronger than fear is Hope.” I also love Dr. Seuss’s – “Say what you mean and mean what you say because those that matter don’t mind and those that mind don’t matter.”

26. When someone is diagnosed I’d like to tell them: Hang tough! It’s your life, live it your way. 

27. Something that has surprised me about living with an illness is:  The amount of things I can still do. Not to mention, all the information and learning out there. Even in the last couple years, advancements have been leaps and bounds.

28. The nicest thing someone did for me when I wasn’t feeling well was: be genuinely kind. Let me nap with no feelings of guilt so I could get back to doing. 

29. I’m involved with Invisible Illness Week because: It’s only invisible if we keep it that way. Bringing it out into the sunlight will help advance our research and hopefully end the stigmas and bring a cure. 

30. The fact that you read this list makes me feel: vulnerable but I’ll always answer truthfully about things asked. Otherwise, how else do we learn. 

MS Impacts Us All

Please take a few moments to watch this video and feel free to share!!

Fight the fights worth fighting!!!

I know my writings have been hit or miss in the past, but I’m trying. My memory isn’t what it used to be. Too many things to do and not enough time. The kids think I play games to waste time, they don’t understand that it is how I keep my brain active. Hidden Item games are amazing for keeping the memory going and so are puzzle games.

Anyway, I had a thought today. When asked for the billionth time about how I cope with having MS, I reply that I just keep putting one foot in front of the other. You know, like the Abominable Snowman and that song from Rudolph the Red-Nosed Reindeer. “Just one foot in front of the other, and soon you’ll be walking out the door.” You know you remember that movie. Bombie is one of my favorite characters and now he is my inspiration on most days. Just getting out of bed is a victory. People don’t get it.

How is it that you are in so much pain and so sick but you keep working? Uhm, duh. I’m broke. I need the health care benefits and the paycheck. Sure, I could quit my job, forfeit my pension, and live off of disability for the rest of my life, but I can’t afford to live like that. I want to live. I want my life. To me, that is giving up. Don’t get me wrong, for some, it’s the only option. My husband is physically disabled and is on disability, but it was a fight, a three year fight, to get him on it. Without it, doom. It helps. He worked a lot of years to earn the right to have that available to him. Thankfully, his working paid for his disability payments and gives him access to Medicare. Thank the heavens. Without that health care, we’d be deeper in medical bills than we already are.

This situation and conversation with a coworker is what triggered my thought today. Remember the movie, “The American President,” with Michael Douglas and Annette Bening? Great movie. One of my favorites. There is a moment in that movie, where Michael Douglas’ character is having a heated discussion with his Chief of Staff, A.J. MacInerny played by Martin Sheen and discussing the situation at hand. A.J. has the best line in this movie while discussing fights that can be won and he says, “You fight the fights that need fighting.” Awesome line. Thank you, Mr. Aaron Sorkin.

I want a shirt that says that on the back and Finding a cure for MS on the front. What do you think?

I’m tired of getting the “But you don’t look sick,” comments. I’m just tired of the charming people that lend their opinions to all these new fangled diets and trends that they seem to think will cure my MS. I say thank you to them for caring about me, but seriously, don’t you think I’ve tried that stuff? Those things aren’t for everyone, every body is different and need different things. Mine happens to need more Vitamin D. For some reason my system seems to have a hatred for the stuff and refuses to process it naturally. So difficult. LoL.

However, I have decided to try and enjoy life a bit more. Try to live while I can. I’m starting a bucket list. I’m trying to chill but I’m not fragile. Not yet. I can still do some things for myself. Like two other favorite quotes, “MS is a bitch, but I’m not MS’ bitch,” and “I have MS, but it doesn’t have me.”

Fight the fights worth fighting, people! 

That’s how we get things done!

Peace!

Okay, Okay, I know....

So, yes, I have Multiple Sclerosis. Meh.

I thought I'd be ready for the actual diagnosis, but I was wrong. It hit like a ton of bricks. Mostly because I have to explain it to a lot of people. They have no idea what it is. Sigh.

I'm learning to live with it though. I have a great doctor. A great support system and I am learning to take it easy. Okay, two out of three of those are true.

It's hard stopping life and rejudging it for what you can and cannot do. But I'm trying.

Book Review: Wool by Hugh Howey

In the immortal words of Richard O’Brian in his lyrics for“Planet, Schmanet, Janet,” “A mental mind fuck can be nice.”

To begin with, this is a rather melancholy dystopian story. You follow the main character, Holston, through his reasoning for questioning his life. It’s well written and a solid read. The story grabs you and doesn’t want to let you go.

Holston is going through the remorse and sadness of losing his wife. He questions his life, his home, his government, just as anyone would. The problem is this story is post-apocalyptic and his entire society is holed up in a refurbished missile silo.

Outside is horrid. Air filled with harmful gases and skin torturing winds; or is it?

There is a truth hidden in this society. Those in charge work hard to maintain order and keep the truth hidden. When someone questions the truth, they are allowed to do as they please and go outside. The trade-off is that the person who desires to leave, must take out the cleaner and wool and clean the cameras for the rest of the people staying behind.

Holston doesn’t realize the truth until he goes outside himself and removes his helmet.

I sat for a bit and had to think about this story. It took me a little bit to really wrap my head around the conclusion. I was going to write that I felt a bit cheated in the story until I found out that this is only book one and there is a Wool Omnibus with books 1-5 in it. There is also a prequel titled “First Shift – Legacy” which is book 6 in the series. I have been told that although book 6 is a prequel, you really should read the omnibus first then the prequel so you truly understand the story.

If the other 5 books are as creative as the first, I’m hooked. Book 1 is currently free on Amazon for Kindle but I would recommend the Omnibus for $5.99. As soon as my pennies add up and my TBR pile decreases a bit, I’ll be reading them and sharing more info here.

I just found out that a Book 7 has been released as of November 12, 2012 - Totally on my TBR list now. 

Amazon Kindle Book: Wool by Hugh Howey

Amazon Kindle Book: Wool Omnibus Books 1-5

Amazon Kindle Book: First Shift (Silo Series Book 6)

Woot!! And book 7 for your reading pleasure:

Amazon Kindle Book: Second Shift (Silo Series Book 7)