Monthly Archives: August 2014

Some ice, some brain disease and some money

When Patrick started having symptoms over two years ago (balance problems, slurred speech, wobbliness) he was tested for a bazillion things: Parkinsons, Multiple Sclerosis, brain tumor, and a million other diseases I had never heard of. All of those diseases come with their own special little test. Awesome. You get to go take the test then sit at home for 4 days (because apparently we can put a man on the moon but not read a test quickly) and wait to hear the results. As a side note- this is when Xanax came to be my friend. Waiting for days on end to hear the results of a medical test is not fun…judge me if you will.

Of all of the tests Patrick went through ALS was BY FAR the most barbaric, horrific, awful one of them all. One of our first visits was to a neurologist in Texas (the first of 4 we would see there) and he suspected ALS. As soon as those words were uttered I cried. I shook. I fell apart inside. Because I know what ALS is. I know that it’s virtually a death sentence. And not a pleasant death I might add. He wanted to test Patrick immediately so we were taken to a room and I sat in a chair in the corner clutching my purse like my life savings was in it because I had nothing else to hold on to. And he laid Patrick down on a table. He explained that it was not a comfortable test. “Not a comfortable test”. HMMMM. No greater understatement was ever made.

There is a very scientific and proper way to explain what ALS is. I graduated from Stephen F. Austin State and I am old with kids so there’s not room in my brain for all that. Simply (very simply) put…your nerves stop sending signals to your brain. Stupid ass nerves. And no one knows why. They just quit. They just decide “ok thats enough” and they forget to tell your brain to walk or talk or breathe. It’s very shitty of them.

So this “test” for ALS. It’s called Electromyography (EMG). It SHOULD be called “you are going to come just short of dying on this table while we find out if your dying”. This asshole started sticking these big fat needles all over my husband. In the muscles of his legs, arms, everywhere. And each needle was wired up and connected to a machine. The needles were big. BIG. Not like a shot you get…BIG. They freaking looked like crochet needles. And Patrick laid there wincing as each one was inserted into his muscles…..and this was the easy part.

This doctor then begins to turn on his little machine that is connected to each needle and said machine sends an electric shock to each needle individually. It’s a fucking torture device. It was barbaric. I was crying watching Patrick in such pain. I asked if this is seriously the way you test for this disease…he said unfortunately they have not come up with much better. Who is “they”? What the hell? For at least 20 minutes he continued to zap Patrick’s muscles and read the reaction of the muscle on his little radar screen. I sat shaking and waiting for the news.

In the end he said that Patrick’s nerve activity looked pretty normal. PRETTY NORMAL. Wasn’t exactly sure how to take that but he did NOT say “your husband has ALS” so I took it.

But a lot of people WERE told they had ALS after this test. A lot of people had very bad news after this test. ALS fucking sucks. And several years ago very few people knew much about it and there was no money for research and to date there’s been little headway towards a cure. When I checked several days ago over $41 million dollars had been raised since this ice bucket awareness challenge started. That is awesome. Amazing. If something so dumb as dumping ice on your head raises awareness (and more importantly money) then go for it. Research is where a cure lies. Unfortunately it costs a lot of money for doctors to do research. And there are a ton of dumbs loopholes to jump through here in the states. Patrick’s brain rot has lead me to look into what other countries are doing in the medical community with neurological disease and it is pretty shameful how far behind the United States is.

I will take my husband to another country for treatment if it comes to that. I have the resources to do that. Most don’t. I was told that we can’t just throw an experimental drug at someone because it could be harmful. It has to be tested for a decade then go through all the red tape to get approved. You know…because you don’t want to give a terminally ill person a pill that might give them diarrhea…WTF?

OK off my soapbox. Research is where its at and Im so glad this ice bucket challenge has happened. I hope that money goes toward a less barbaric test for ALS. And I hope the awareness of the disease brings more and more money.

And for Patrick’s brain rot (Spinocerebellar Ataxia) I can only hope that money will be raised as well. It is such a very rare disease and those rare diseases get very little attention and very little money. There is no cure and no treatment for what he has. NOTHING. Only 3 trials actually occurred this year for SCA. Three. And no positive discovery from any of those trials. But I like an underdog. And I like my husband. And when you tell me something is impossible Im gonna show you its not. Im a fighter and so is he. ALS sucks and I hope to God they find a cure soon. And for those of us in this community of “neurological disorders” we feel as if we are one big family. Any money is good money. So pour some ice over your head if you want BUT…make sure you donate. Or donate to the National Ataxia Foundation if you feel so inclined.

http://www.ataxia.org

20140824-080834-29314425.jpg

Advertisements

Some Summers

I don’t even know that its that I don’t like summer it’s just that I feel with each summer that passes a little more time is slipping by. Summer when I was young was my best friend, Christy and I swimming in her pool and sleeping late and staying up watching tv shows we were not supposed to watch. There were slumber parties and lots of sugar and prank calling boys on a phone with a cord attached to a wall.

In highschool summers meant more parties. Friends and driving and sneaking out and boys tapping on my window and John Hughes movies and cheer camp and toilet papering friends’ houses. It was freedom and staying up late and tanning and sun-in in my hair & Bon Jovi blaring.

I remember a few summers in college realizing how lonely summer can be. I was away at college in my apartment working my part time job and taking a few classes. Three hours from home. Up late studying in between going out and working and long nights at the football field with friends. But I remember thinking…summer will never be what it was.

There’s a funny thing that happens when you grow up. At some point you realize that for adults summer is no different than the rest of the year. You still have to go to work. There’s no sleeping in and no slumber parties and no “yay we are out of school for 3 months” feeling. And then you have kids….

When they are little there is no difference between summer and the rest of the year. But once you have school-aged kids its a game changer. You see in their eyes the excitement on the last day of school as they run out of that building like their life depends on it. Its a familiar look. And come mid July as you look at their lazy asses on your couch eating chips and complaining that they got up before noon you smile. Because you know. You know exactly that feeling. Summer. I think you have the right to enjoy the “nothingness”, the sleeping in, the un-healthy, crappy food, the sleepovers, the pool, the late night phone calls. Because that’s what summer is when you are young. And now as I realize 41 summers have gone by I look back on this one and smile….

I met some amazing people this summer. I have had some VERY amazing experiences. And I got to see summer the way I remember it through my children’s eyes. I complain about them and God knows Im ready for school to start but even cynical old me is a bit sad to see it all end. My kids will go to school everyday and then have soccer and cheer and homework and science projects and we will buy stupid candles we don’t need for a fundraiser for some crap we could have just paid for. We will sit through four thousand soccer games and cheer competitions and school concerts and video them all. And another year will pass. And they will be older and taller and smarter and one year closer to leaving. But in between will be one more summer.

And I will take a deep breathe and smile and maybe have a glass of wine or three and realize these fleeting days are all you get with them. Because despite their genes (or maybe because of them) they will fly away. They are meant to, you know. From the minute you bring them home all you do is prepare them to fly away. And all your hopes and dreams for them unfold in ways you hoped they would and maybe in some ways you didn’t. And it will all be ok. It’s just a cycle. I swear five minutes ago they were in diapers and I wasn’t sleeping and wondering why the hell I ever wanted kids. Today, as summer is nearing an end I look at them and they are people. And they make me laugh and scream and cry and frustrated and proud and nostalgic and mostly they make me remember what summer is all about. Here’s to the perfect end to a perfect summer…and enjoying every last minute of it. (5 days but who’s counting?)

20140815-082959-30599963.jpg

This Skinny B!tch is Pissed

So the news has been inundated with this controversy over the GAP Model that is “too skinny”. This story pissed me off so bad I needed a day or 2 to think before I wrote about it. She is skinny. VERY skinny. So am I. I am thin. ALWAYS have been. I have the same body shape as my grandma. Same genes. It’s funny that this story coincides with me finishing the Three Day Refresh (cleanse) from Beachbody. I have a lot to say. And you may not like it but Im gonna say it.

The following were just a few of the thousands of tweets that The Gap got for featuring a thin model……

Seriously, @Gap? In what world do people look like this? Perhaps you could select models who represent regular gals & not a skeletor ghost.

@Gap @AndreaKcc Doesn’t the Gap feed it’s models? Seriously she looks ill. Please use healthy looking women in your ads next time.

@Gap that girl needs a cheeseburger

.@Gap This. Is. Not. Okay. Model seriously underweight; promotes unhealthy thin-ideal PLUS normalizes look of #anorexia. I’m #notbuyingit

Now replace the references to being “skinny” with “fat”. Not OK! NOT OK!

Last I checked I live on this planet…and I’m skinny. Social media has had many positive aspects. And some very negative. It gives people a place to hide behind a keyboard and spout mean things off at others that they don’t even know. The tweets above are horrific, sad, mean, hateful, cruel, insensitive and immature. I do not debate your right to free speech. You are allowed to say these things and think these things. I am allowed to respond. My daughter took my “before” picture the day before I started my Three Day Refresh. My husband saw them and said “babe, you cannot put those online and talk to people about losing weight…you’re already thin”. Well I assured him TheRefresh is not about losing weight its about cleaning the toxins out of your body and starting over with a clean eating program. But it made me stop and question my pictures. He did nothing wrong. He’s my husband and Im pretty sure he’s ok with how I look 🙂 More importantly…IM OK WITH HOW I LOOK!

I think his fear was how I would make other people feel who have a weight loss journey ahead of them. I get that. But now Im questioning myself. Why am I afraid to put my pictures online? Is there something bothering me about me? Well….no! Thats the weird thing. Ive written before about body image at my age. I am more confident now at almost 42 with my “old” body than I was at 24 with my perfectly in shape, never had babies, no wrinkles, no cellulite body. I just am. Comfort in your own skin comes with age. I like it. So I was going to post my pictures and screw what anyone else said about me or judged about my body. Whatever. Then I wake up to this Gap Model controversy.

This chick is SKINNY. I mean skinny. She has boy boobs (like me) so it makes her look even thinner. But guess what? There are skinny people in the world. There are naturally, genetically skinny people in the world. They are born that way and believe it or not THEY EAT. Sure theres the people that have eating disorders. Bulemics, Anorexics, Overeaters, Gluttons, a plethora of disorders are manifested through food abuse. But some of us are just fucking skinny. When I was 8 I went to trick or treat dressed as Dolly Parton. I idolized Marilyn Monroe. Those hips and curves and boobies were soooo pretty to me. It was MY personal view of what physical beauty was…..all the things I’d never have. Thankfully I had great parents and good self esteem and was perfectly fine with my boy boobs and little booty. But there were mean people who said a few things to me over the years… “do you eat?” “are you anorexic” “skinny bitch” “eat a burger”. I blew it all off and really just ignored it. When others call you names its a sign of insecurity on their part.

But this model looks to be very young and I don’t know if she has great self esteem. I hope she does. I hope she ignores the haters. I hope she’s comfortable in her skinny skin. She’s pretty just the way she is. As is every OVERWEIGHT person. We were all born with different shapes and sizes. I believe firmly (in my line of work) that we are to treat our bodies as temples (Buddhist ones of course 😉 ) and feed it only healthy things and exercise. You only get one body- TREAT IT AND FEED IT RIGHT! I eat healthy. I exercise. Im thin. And in what world would it be ok if people accosted a fat person in an ad on tv? We would all be up in arms…as we should be! It’s just not nice to make fun of someone’s body. It’s just NOT! Stop for one second and think if that was your daughter people were making fun of. Im sure every single one of those 1,000 tweeters who wrote hateful things to that girl have perfectly proportioned bodies…Im sure they do. But I don’t. And most of the people I know don’t. So on behalf of her and every skinny-ass girl, fat girl, tall girl, short girl, big-boobed girl, no-boobed girl…just be YOU. Be the healthiest version of you that you can be. Judgement is a human thing- we all do it. We are often our own worst critics. But even if JUST for today be proud of the body you have. And screw the haters!! 😉

20140808-080930-29370443.jpg

Dear Dad

Dear Dad,

This week every year is so weird for me. Im sure it’s weird for our entire family. August 7th will be eight years since you died. Eight YEARS!!?? Sometimes it seems so long ago and sometimes it seems like yesterday. I usually write a little something every year ABOUT you. This year I wanted to write TO you.

Dad…we moved to Colorado! Seriously. Just up and moved. Patrick got a transfer with Fed Ex and we took it. Voluntarily asked for it. We love it here. Of course you know that already because you loved it here so much. I see what drew you here. I see it. Every single day I see it. These mountains are quite addicting. The beauty of them is breathtaking and just between you and me I don’t ever see myself leaving the mountains. I’m hooked! I think Mom was sad that we left but Im working on getting her to move here eventually….

The kids love it here. They are so happy. Andy is playing on a competitive soccer team and he’s so much like you and I. Stubborn, funny, hard-headed, loving, loyal and drives me bat-shit crazy. He’s so damn stubborn. Such an “Ellis”. Maddie is doing competitive cheer, speech team, student council, national junior honor society, volleyball and a bunch of other crap that makes me exhausted to type. She’s freaking smart. Weird smart like Patrick but also pretty. Serious combination of stuff that will probably give me a heart attack but I am so proud of her. You would be too. You’d be proud of both of them. They miss you.

Im doing this Beachbody thing now. Loving it. Getting paid to workout and help other people is pretty cool. Im having fun. You’d get a kick out of it. Patrick is doing well at work. He loves living here. Way less stress. But I guess you already know about the brain rot. It sucks. You’d be pissed off- like I am. You were never one to just accept some bad shit as “fate” or “meant to be” or “in God’s will” or whatever the hell else other people say to make themselves feel better. I think its bullshit myself. A kind hearted, sweet, giving, smart, honest, hardworking father of 2 who takes good care of himself gets some rare disease that makes his brain shrink- its just total BULLSHIT. I know you would agree. I don’t accept it. I don’t think its some will of someone, I don’t think its fate, I hate it. And if you were here I’d be able to cry to you. It sucks that you’re not. Out of all of my friends and family I could talk to you most honestly about it. Scream at the top of my lungs. Not be strong or inspirational or brave…just be your little girl for a minute and CRY. It sucks being a grown up sometimes.

Mom’s favorite movie has always been Steel Magnolias. She thought the Dad shooting at the birds in the tree was so much like you. I hate that movie. I hate it. Steel Magnolias is a metaphor for Strong Women. And lord knows I am one. And come from a long line of them. You are most aware of that.. I like being strong, don’t get me wrong. But Dad…Pawpa was so much the head of our family. Your Dad was an amazing man and I was so close to him and when he died it started this chain reaction that I can’t seem to stop. He died and then you died and then Mom’s Dad died and now Patrick is sick. I am so fucking tired of all of the men going away. Im tired of the women being left to stand alone and be strong. As strong as Mom and Nanny and Granny and I are this is enough already. Why do we HAVE to be strong and brave? Why do we have to be Steel Magnolias. OK…done bitching about it. I’ll go put my big girl panties on because I know thats what you’d tell me to do.

Most days Im ok. Really I am. I am way stronger than I ever imagined. But if you walked in the room I’d fall apart. I’d have my big, good cry and my Dad there to make me feel better. I look at my friends who still have their Dads and I will admit a tiny part of me is mad/jealous/resentful. Mostly I just hope to God they realize how lucky they are. I think me being able to talk TO you instead of ABOUT you is a cool step forward. It hurt too much the first few years. Now it feels ok. I still think its bullshit that you died. That will NEVER be ok, NEVER be healed, NEVER be acceptable. And thats OK. I don’t have to fit someones else’s definition of “healed” or “closure” or whatever.

Please know that I am happy. Despite the brain rot, Patrick & I are happy. Life is good and your death showed me how abruptly it can end. I appreciate every single day- to the fullest. It’s why we moved to the mountains. Its why I spend so much time with friends. Its why I live freely and take chances and tell my kids dirty jokes and sit on my deck when I should be working. Its why I play music loudly. I am happy. I love that I have your feet and hands. I love that I sound like you. I miss you. And holy hell I hope they have beer and Bob Segar where you are…otherwise that would totally suck. Gonna have a beer or 2 for you on August 7th. Coors of course.

Glad I can talk to you…and just between you and me Ive seen my share of other Dads and I hit the damn jackpot. SOOOO grateful. Thank you for not babying us or censoring yourself around us. Thank you for encouraging us to think for ourselves and not forcing your views on us.Thank you for the music and cussing and beer and for being the coolest Dad ever in the history of ever. I miss your early morning calls on my Birthday. You were always the first to call me….I miss that most.
Love you,
Me

20140806-074728-28048964.jpg