Tragic Endings

Last night my dream was a movie. It was from the point of view of me as a viewer. The woman was a time traveler and had all these subtle struggles in life. She would jump to the future and past, although I don't know if she controlled where she went. And then at the end of the dream, it was present time, and she was lying in bed with her lover. She revealed she had a spinal cord disease, more specifically SM and how her world was shattering.

Yay to me for thinking there would actually be a movie on this. Boo for dreaming of SM yet again. Seriously.

Somewhere in a hospital room

(Aunt Gert and Grandma at Beth's wedding last weekend)

I don't like the term "heart failure".

Heart: a hollow pump-like organ of blood circulation, the center of the total personality, the center of emotion, the capacity for sympathy, spirit, courage, enthusiasm, a vital or essential part, core

Failure: lack of success, nonperformance, an insufficiency, deterioration

A very small fraction of these definitions can be used to describe my grandmother: a hollow pump-like organ of blood circulation, nonperformance

There is so much more to 'heart' than the organ. She loves... so deeply. While her mind deteriorates and robs her of her memories - she still loves. She may not remember that grandpa was moved into a nursing home, but she asks for him every day and usually every 5 minutes. She loves him and she misses him. She knows sympathy and compassion, sparked by the early loss of her kids and also a daughter-in-law. She has courage. She faced breast cancer twice and never stopped fighting. With their chocolate frosting and sprinkles, her Christmas cookies are a vital part of the holiday celebration. Most importantly - she is the core in our family.

So you can say her body is failing and breaking down, but don't for a second say it's heart failure. Because she has more heart than anyone, and in all her years - it has yet to fail.

Is it July yet?!

As I sit here and type my left leg is tingling.... I'm trying to decide if it is another episode or a breakthrough thing. ...to be continued...

So today I started the list of everything I need to ask the neurosurgeon. My general topics are:
-diagnosis
-probable cause
-prognosis
-activity limits
-pregnancy/parenting
-follow-up
-treatment
-disability

We shall see what else I come up with in the next 42-ish days.

I'm trying to be realistic about this appointment, but it is so hard. I view him as my god, the Holy Grail, my savior, etc. etc. He is all-wise and all-knowing. He will be able to answer my deepest and darkest concerns. He will be kind and caring and encourage me about my future. I hope. I hope. I hope.

This week has been plagued by SM nightmares. Nightmares about lifting too much, or being severely disabled. How stupid. Really. I can't use my dreams to escape this reality.

Or try this reality: I need more packing tape. So I went to the store to get tape, trash bags and some snacks for the week. I was good and got fruit, but then I was bad and got soda. I knew what I bought weighed too much. I could just tell. SO I weighed it when I got home. DID YOU KNOW.... a 12-pack of soda weighs 10lbs?! Then pile on the other items and I was over. I don't like this one bit.... it was a 12-pack and one plastic bag. And just seeing other parents in the store with their kids made me realize that I will never be able to grocery shop or run errands without a helper. This sucks. What is my life becoming? I just want to be happy.

ps- It is an episode. It spread to my left arm while typing all of this. Start the stopwatch.

I got a neurodude!

Here is another painting of mine... I'm super happy with it. I had been thinking about it for a while and managed to scrape up what little paint I had left to complete it. Again, painted on a random piece of cardboard.

Also, BIG NEWS in SM world! I have an appointment with a neurosurgeon! Not just any neurosurgeon, but THE neurosurgeon who hosted the ASAP conference last year! I can not wait to meet him. Just a little over a month to go!

On the down side, both of my legs were numb yesterday for roughly 2 hours. I was doing so good too. I'm just worried that this is the start of another every other day spree again.

So I go to go home this weekend. I got to meet Baby Cameron and Baby Alex for the first time. They are both about 7lbs (good holding weight!). I also got to see so many of my little cousins and my niece. I was really hoping that being submersed in babies and kids would re-light that spark in me. The spark of "I can't wait to have my own babies and live happily ever after!". Usually being around kids a lot does the trick. I even had someone come up to me while I was holding Alex and say "You look very comfortable there. Soon enough!" But no, nothing. If anything it makes me want kids less. At the wedding I saw parents holding their child and slow dancing. Later I saw kids being picked up and put in swings, or being held while crossing monkey bars. Or the kid who crashes and falls and cries, and then mom swoops in and picks them up to kiss away the tears. All of this normal stuff I won't get to do. Sure I can do all the stuff with the little 7lb babies, but they don't stay that small forever. I can't believe how I could go from wanting 5 kids as soon as possible to having absolutely no desire or inkling to raise kids of my own. It's really depressing. I hope after meeting with the NS he will renew my hope in my future and bring back the old me. I hate new me.

Summer turned to winter
And the snow it turned to rain
And the rain turned into tears upon your face
I hardly recognize the girl you are today
And God I hope it's not too late
-MB

I'm a big loser.

Syringomyelia ruined one of my favorite shows. Since I was diagnosed, I can not watch The Biggest Loser without crying. Every time the contestants are in the gym I can't help but think: "I can't do that... or that... or lift that much weight... or do that." It is horrible. I'm so discouraged. I can't wait to move back home and get in my swim classes and find a personal trainer. Can't wait.

I'm trying my hardest not to let the negative thoughts on SM ruin babies and children for me too. It's a constant battle.

I hate battling.

My Top 3 Quotes:
1) Reid: It's not. It's got me all messed up. I don't know how to focus, I can't do my job as well. So, what do I do?
Morgan: You use it. Let it make you a better person.
-Criminal Minds

2) Be a best friend, tell the truth, and overuse I love you. Go to work, do your best, don't outsmart your common sense. Never let your prayin' knees get lazy and love like crazy.
-Lee Brice

3) Our misfortunes are none of His doing, and so we can turn to Him for help. Our question will not be Job's question "God, why are You doing this to me?" but rather "God, see what is happening to me? Can you help me?" We will turn to God, not to be judged or forgiven, not to be rewarded or punished, but to be strengthened and comforted.
-When Bad Things Happen to Good People, by: Harold S. Kushner

BSN title holder

I did it! I graduated nursing school. I'm the proud owner of a bachelor of science in nursing.

Graduation was on Saturday May 15. I got up super early for Olivia to do my hair. Then me and my families drove to campus. We met up with all of my nursing peeps on the bus and headed to the Kohl Center. We got to listen to the United States Secretary of Education Arne Duncan who was actually pretty fun to listen to. Then I walked across the stage and Dean May was there to greet me with my diploma. Afterward we headed over to the nursing lunch buffet and then walked up Bascom to sit on Abe. Abe is a very deceiving man... he is very slippery and very tall. Then back down Bascom to the Union Theatre to attend the nursing convocation. This is when I was truly the most excited about graduation... I got to walk across and shake Dean May's hand and take my picture with her. She is such a vision for nursing and very inspiring and dedicated. Then the family left, and it was time to chill.

The whole day really wore me out. The chairs at the Kohl Center were the start of my pain. I'm not sure if it was the chairs themselves or the act of sitting so long. But I had horrible pain in my shoulders and upper back the entire rest of the day. I definitely had a break down before bed and just cried it all out. Everything that I had been thinking and feeling for the last couple weeks.

And now what?

Study for the NCLEX. Pack my crap for the big move. Try and find a personal trainer so I can finally exercise. Continuously look for a job. Harp at the neuro clinic so I can get in to see the surgeon. Reconnect with friends back home. Babysit Cameron while he is still small enough to carry.

I feel my existance is going to be pretty lame for a while.

Happy Birthday!

Happy Birthday Cameron Miles!!!! My cousins Jess and Rob had their baby today! 8:07am. 17.5 inches. 6lbs 0oz. He is such a little peanut! He is the baby who saved me back in October.

I was so excited when I woke up and saw a text from Jess saying she was in the hospital! I started texting everyone under the sun! I got a text from Tricia saying he was born just after 8am. I was just getting out of the shower.... and then I started bawling.

Even though she had a c-section, she still got to see her baby right away. She got to hear the first cry. I would never get that. No matter how many kids I have, I would never get to experience that.

I went over to Olivia's so she could style my hair pretty... she asked me my take on pain meds during labor. I told her I don't have a choice. I told her I don't think I want kids. She told me I'd be a great mom and she hopes I change my mind. I don't know about anything anymore. I can't stop crying. Why would I have kids if I can't do anything with them? If I can't do anything? I hate life so much. And I shouldn't. It's such a happy day for everyone. Why am I like this? I can't do this. I can't do anything.

I'm going to go fake my way through work for 16 of the next 24 hours....some how.

'Off' Day

I hate being alone. The puppies just don't cut it.

Nights are really lonely and really hard. It is so hard going to sleep in an empty bed after having a cuddle buddy for so long. Puppies are only so cuddly. Today was really rough. I was super productive and bought cute new scrubs and canceled cable/internet. I also made a ton of yummy food for working this week. But I still had too much time on my own. I found myself crawling back into bed and just getting really bummed out. And once the thoughts were in my head they stayed. And now I'm done with work and have more time to sit and dwell. Bah hum bug!

Voila!

My masterpiece is complete!!!


So yes, I'm a nerd who paints diseases. (since I don't have a job lined up I may consider doing this full time. hehe) Yes, I'm also such a nerd that I use nursing lingo... the "c" with a line above it stands for "with". It took me a long time to decide what to do with the background, but I'm very happy with how it turned out.

I'm done with classes hopefully forever. Graduation is just around the corner. I went out to celebrate with some of my nursing girls and our favorite clinical instructor. Go Team Tipple!

I'm content. :)

And with a broken wing
She still sings
She keeps an eye on the sky
With a broken wing
She carries her dreams
Man you ought to see her fly

What happened to Miss Independent?

These past two days I've found out some things about myself:

As my massage was beginning Mary went to move my hair out of the way. I lifted my head to help her and she yelled at me! "What are you doing? You don't get to do any of the work! I do all of the work. Nurses always want to help, but this time you don't."

And then when I was lifting chairs at the garage sale, Olivia yelled at me for helping an lifting.

I realized the absolute hardest part of having syringomyelia isn't the chance of not have a perfect delivery or kids, but rather the idea of being dependent. Not being independent. Having to rely on others to help me carry things and do household chores. Maybe someday have them help me walk or move or get dressed. I wanted to become a nurse because I like feeling needed. I love when I can be the one people depend on for survival. When you are sick or injured, I want to be the one you can rely on to get you back on your feet. My whole life revolves around me being the strong one. My friends always come to me for advice when they have problems. My family calls me with medical questions. Patients call me to help them walk for the first time after surgery. I'm supposed to be the dependable one. Not anymore.

Now I sit in the corner and watch. Soon we are moving. Boxes have been piling up for months now. It's going to be so hard not to just grab one and throw it on the truck. I have to sit back and watch others do the work that I was "able" to do a mere month ago. Luckily I have oodles of great family and friends who have offered to help. I want to help. But I can't. Even at work, it is starting to get to a point where I'm going to have to say, 'No I can't boost that patient. No I can't help them up.' I don't practice nursing cuz I went to school for it and need a job. I do it because I love it. I pray that I can find a good nursing job that will allow me to be a dependable person that just doesn't have to lift. I don't even know how I will cope if it gets to the point where I can't walk or even go to the bathroom on my own...

I want my old carefree life back. :'(

But it is never gone.

Maybe I'm to blame for this one...

I got a call this morning that my friend was selling patio furniture at a rummage sale. So off we went to pick it up... literally. I got yelled at for lifting the chairs and a table top. Maybe I should have listened... Within a half hour my neck and shoulders hurt insanely bad. I'm not sure if it was from my massage yesterday. I know some people have flair ups after massages. Maybe it was the lifting after my muscles were so relaxed. Or something completely new. I don't know.

So I was painting flowers today, for Josh to give to his mom for Mother's Day. Well the final product looked like garbage, so I scrapped that. But I still wanted to paint...

So I turned the canvas over and started painting on the boring cardboard background:

I'm not finished. I want to add more. Do I show my heart murmur? Do I use colors to represent the horrible pain I've had all day? Do I add the tears that inevitably follow this condition? Do I show my broken future?

Who paints spinal cord diseases? I suck at life.

Quote of the Day, courtesy of Criminal Minds:

"It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone."

-Rose Kennedy

Gma & Gpa Update

(Gramps & Gran & Princess Cora in 2007)

So grandpa is getting a CT on Wednesday to see if a stroke is the cause of his rapid deterioration. Seems to fit the bill in my mind.

Grandma is back home but family is staying with her every night and hospice will be coming to the house multiple times a week. Eventually her heart failure of 10+ years is going to catch up to her and it will just stop.

(Me and Gramps in 2006 - he thought he looked terrible in this picture, lol)

Again my day is right back down where all the other days have been. The only plus is no pain in my neck or lower spine today, and no symptoms.

Right now I'm so anti-kids. What is the point of having a baby if you can't even hold it? Fuck these last three weeks destroying everything in my life.

I needed today

This morning I had a massage appointment with Mary, a nurse I work with. She has a spa in her house where she performs a combination of Western and Eastern massage techniques. It was at 9:30 this morning. I was sad I didn't get to sleep in on my day off but it was so worth it. It was only $45 for almost 2 hours worth of awesomeness! When we started I still had that same pain in my leg from yesterday, although it was less intense. But by the end of the massage it was long gone. :) Toward the end I was definitely more relaxed and even falling asleep.

When I got home I cleaned up the house because they were going to show it this afternoon. And I took a long hot shower, which really energized me.

I hung out with the puppies most of the day which was nice since it was so crappy and rainy out. When Josh got home from his last day of work (YAY!) we ordered Domino's pizza. We ate pizza and watched TV and fell asleep. We ended up napping for 2+ hours. Now we are just hanging out, with nothing particular to do. Sure I could study, but that would ruin the relaxing awesomeness that is today.

Tomorrow Maggie and Chelsea come to pick up Smalls. And then Sunday Josh is moving out. I'm nervous to be all by myself down here, well I'll have the dogs... I'm so glad to be moving out of this neighborhood. Some sketchy pot smokers moved in down the hall and I want to get as far away from them as possible. Without Kyle and Tracy here I don't know who to go to if I need something, I guess there is always Jared downstairs. Meh, the end of the month can not come soon enough!

Today has been OK

I got my medical ID necklace today. :) On the back side it has my name, syringomyelia: protect head and spine. I've been so paranoid driving without it.

Twice in the past week I've had to take medicine to relieve pain. Today I have stabbing/flickering pain in my right thigh. I had it a week or so ago in my right bicep. It's really weird and extremely irritating. Like pulsating, stabbing, burning... I don't know how to describe it. I'm not sure how closely it's related to SM, but it is there.

Also, I read that sometimes depending on the size and location of syrinxes surgery isn't an option. I'm worried that because of how far spread mine are they won't be able to do anything if need be. I can't wait to get in to see the neurosurgeon.

On a dumber note, my grandma was brought to the ER yesterday because she was having trouble breathing. The entire family was up there with her. Things aren't good. I wish this wasn't dragging on. It really sucks.

On a bright note:

Happy Nurses Day! (damn I need a job)

Also my amazing 90 minute massage is tomorrow morning. It has been well-deserved and very much needed.

Boredom Strikes

I was bored and filtering through all of my past facebook status updates. (I need a life, lol.)

I came across March 28, 2010: "How fast can a year fly by???"

I posted that not because I wanted to be out of school or would be married by then. But because Josh and I were going to stop "being careful" in March 2011. And if a baby happened, it happened. We thought that three months after the wedding would give us time to get ready and to let my body get ready for baby making. Who would've thought that 5 days after that status update I would receive news that my MRI showed syringomyelia? Or that a year from then, I wouldn't be trying to start a family, but rather getting my next round of MRIs to check for syrinx expansion? Or that I would need to find a neurosurgeon at that time to go over and compare my MRIs to say if kids was even viable or if surgery was in my future? Curve balls suck and I was never good at baseball.

Nowhere else to run

I have no more hiding places. Last night I had a nightmare that caused me to wake up in a panicked sweat. I woke up because..... I was carrying too much. I had two dogs I was carrying and my mom told me that they were too heavy. I panicked, and woke up. I'd like to find one other person in this world who has nightmares about lifting. Seriously.

I got to talk to my friend Josh P. in class today, he wanted to hear all about the duplex, etc. His wife just had a baby on May 1st. He is a huge fan of being in love and having babies. One of the first things he said to me was "Go get pregnant." .... bad timing. Which led to the whole conversation about syringomyelia, and Josh making me cry. He's seen me cry a few times. He is such a good friend and a good person.

In class we also had exercises to explore changing health behaviors. We were talking about me and about how SM is affecting my relationship and life overall. Then Liz started tearing up. :( I guess I'm not the only one who has been knocked off guard by this stupid crap. I'm such a good faker. One student, Kelly, was there when I was talking to Josh. She asked how I was so calm about everything. I told them it was all fake. I'm a real good faker. I'll cry if someone else does first, or if they hit the right spot, but otherwise I cry by myself. In the shower, in the car, or when I'm home alone.

Sometimes I want to think this:

"Shared joy is a double joy; shared sorrow is half a sorrow." -Swedish Proverb

But mostly I think this:

"You must understand, the Ring is my burden. It will destroy you." -Lord of the Rings

LotR Wisdom:

Frodo: "I wish the ring never came to me."

Gandalf: "So do all who have carried its burden, but that is not for us to decide. All there is to decide is what to do with the time that is given to you."

Wow. I'm a nerd. :)

Allow me to Elaborate

So I was doing mega searching today...

Some SM chicks have epidurals if their syrinxes are high....mine is a big one high and then through out the rest of my spine. Someone told a story of a person who decided to try a vaginal birth anyway, and then months after delivering was hunched over crippled, and couldnt use her arms and couldn't even carry her baby.

So general anesthesia section it would be. Meaning I wouldn't even be able to be awake for the most important day of my life.

Then I read advice to mothers. They talk about how their children cry and cling to their legs and look up with big eyes and crocodile tears, just wanting to be picked up and rocked and held... but they can't. They can't carry their kids anywhere. How fucking horrible. I could carry my kid until they are maybe 4-6 months old... even before that I wouldn't be able to carry them in their car seat.

I feel very robbed.

I feel bad for Josh too. He is going to have to pick up so much slack. Like doing all of the yard work and snow shoveling. He asked if I would be willing to switch dishes for laundry duty again, but at our new place the laundry is downstairs. I couldn't carry heavy loads, and even then I wouldn't want to have my hands full and trip on the steps. He is so understanding and more than willing to help in every aspect. I just know it will be very wearing on him over time.

I just want all of this to be gone.

Not feeling well

I'm very anti-baby today. I was looking through my friend's labor and delivery pictures. I will never get to have the future I've been planning for so long. Fuck life.

What a pain in the...

NECK!

The past two days at the end of the day, my neck is in excruciating pain. It really sucks. Even the rice buddy doesn't help. It hurts to be up-right. I'm only comfortable laying down, but that just isn't going to fly when I have a paper that needs writing. Also, I've been having random bursts of tingling, but since they don't last a long time I've been not recording them, cuz they are just weird. My symptoms are just about every other day. :/

I'm working on setting up a consultation with a neurosurgeon. Not just any neurosurgeon, but THE NS who hosted and led the American Syringomyelia Alliance Project national conference last year, right here in Madison. :) It's going to be a pain to get all my records to him and such and hopefully he will meet with me. I want to meet with him soooooo badly. I have a mad crush on him just because he is so knowledgeable about my condition. So that is my mission this week: set up a meeting with the most important man in my life!

Also, some good news for a change: Josh and I scored an amazing duplex! It is 2 bedroom, 1 bath, fenced in yard, amazing location right off the highway, fantastic landlord. I can't wait to move in! I'm already decorating in my mind... that is how I pass the time. The puppies are going to looooove having their own backyard!

Well back to writing my paper, along with drugging up and rice buddying-up for my neck. One more day of classes ever! One more final ever! Yay real world and real money!

Black Listed

I applied for a job today. It was through Aurora... so I expected my rejection tomorrow... they just don't want new grads and have a great 24 hour turn around time.

Received my job application confirmation: Sun. May 2, 2010 8:04am

Received my job rejection email: Sun. May 2, 2010 8:49pm

WTF! A rejection in less than 12 hours on a Sunday! What is this world coming to?! Have I been black listed by Aurora for applying too many times?????

*Sadly this is the highlight of my day* haha. Closely followed by a blind guy saying to me: "It was nice seeing you."