Blog entries for rachski79

Cameras...Lights...Please don't faint

rachski79 — Mon, 28 Nov 2011 18:24:58 GMT

If you have read my posts in the past, you know know my story... I use crutches to walk. I was born with a disability that affected all four limbs. I went to college, got married and had a son. In most ways, my life is normal but the challenges I face are not. So I started a blog. www.mylegisnotbroken.com

Last week I had the chance to share my story on the Morning Blend. It was awesome, you should check it out.

http://www.mylegisnotbroken.com/journal/2011/11/21/cameraslightsplease-dont-faint.html

Holding Hands

rachski79 — Sun, 06 Nov 2011 02:03:49 GMT

My son is almost two. It is starting to become hard to remember life before him even though we were married 6 years before he entered our world.

We used to come home from work, eat dinner and watch our favorite shows while multitasking on our laptops and phones. We had so much free time - we did not even know it. Our house was clean and free of clutter. If we liked something we bought it because we had not yet experienced the pain of the weekly check to daycare.

Oliver has added a new twist. He’s taught us things, whether we wanted to know or not. We mastered going to work on two hours of sleep. We learned the tricks to nursing, avoiding leaky diapers, staying sane during the food throwing stage and getting him to nap.

I have found that each stage brings a different challenge. Some just were tugs on my heartstrings as mentioned in no…no…no…DADA and some are blatant reminders of the things I physically can’t do.

One night after work this week the weather was perfect. The leaves were floating down from the trees filling our street with brilliance and the air held the crisp intoxicating taste of fall. If that wasn’t enough, it was still warm enough to play outside and enjoy the magic.

Oliver started walking down the sidewalk and grabbed my husband’s hand to join him. He then held out his hand to me, looked at me with his big blue eyes and said momma?...he was inviting me to join the walk.

I can’t walk, hold on to my crutch and hold his hand. Before my husband, I was the type who would see a Sandals’ commercial and wanted to be the hot girl walking on the beach at dusk, you know holding the hand of a dreamy guy. Well, this moment blew that type of fantasy away.

I would have given anything to hold the hand of the sweetest boy on earth and walk around the block.

I felt bad because he’s too young to understand and I would never want him to think that mommy doesn’t want to walk and hold his little hand. I understand that it’s small potatoes in the grand scheme of life, but at that moment it made me really sad.

www.mylegisnotbroken.com

5 Things I Learned Bowling

rachski79 — Sun, 09 Oct 2011 20:08:43 GMT

I've never been bowling.

Yeah, I have been to a bowling alley plenty of times but never tried throwing a ball or anything. I would usually hang with my friends, play the video games, slurp a soda and maybe keep score for them.

I recently had a night out with my hubby and friends. They wanted to go bowling and I was pushed to give it a try too. Did you know they have adaptive ramps that you can set the ball on and with a good push it shoots down the lane? Me either.

I am not a huge fan of using adaptive things. It makes me stand out and look different. You know, because sitting on the chair doing nothing is so cool. {eye roll}

I scored an 81 on my first game and then a 95. Sadly, my third game was not all that impressive. I'd like to call it bowler's fatigue. Three games is just too much.

5 Things I Learned Bowling:

The shoes are super uncomfortable. I felt like I was walking on cardboard. It also feels slightly gross. Who wore those puppies before me?
Teenagers making out look really stupid. When I was young I remember witnessing such episodes of PDA and wanted a boyfriend too. Now I wanted to break them apart and scold them. Does that make me lame...or getting old? Maybe both.
I found out there is unspoken bowlers etiquette. Who knew it was not nice to go bowl when the person next to you was in action!?!
No one cares. I felt like eyes were burning a hole in the back of my head when my turn was up. But then I would turn around and find that no one was even paying attention. Everyone was talking, drinking or perhaps making out.
Bowling involves lots of knuckles and high-fives. For an AMCer, that a big downer. {sad face}

To follow my journey with AMC visit www.mylegisnotbroken.com

airports

rachski79 — Sun, 11 Sep 2011 03:10:15 GMT

I love airports. They have a magical zest to them. There is a contagious energy in the air - it's full of anticipation of where you're going, and for some, the excitement of where they have been. My favorite airport memories are back before 9/11 when you could walk your loved one to the gate, hug them goodbye and watch the plane roll away. While waiting I'd watch people exiting planes and the homecomings, squeals and hugs from those awaiting their arrival. I felt happy because they were so happy. Kinda weird, ok maybe?

I'm traveling to Cleveland, OH this week for work. Half of me is super excited since as you now know, I dig airports. The other side of me cringes because things are not easy.

Got bags?

Normally, you bring a suitcase. I can't walk on crutches and pull a suitcase so I need help with that. If you can walk and pull a suitcase, you are so stinkin' lucky. I'd love to be you for a day. Oh and to be a person who can wear cute heels, pull a suitcase and talk on the phone at the same time....well you're my hero but I also might hate you a little out of jealousy. {wink}

Hello security.

My crutches have to go through the conveyor belt metal detector with the bags. They always ask me to walk without them through the scanner but the staples in my foot set the buzzer off. I don't even bother anymore. I tell them I need to be patted down instead. With my luck, It is always a man working and he shouts "female assist" since he can't touch me. The people around me look annoyed since I'm slowing down the line. Typically, a super busy, sweaty lady pulls me over and pats me head to toe. She then proceeds to run my shoes through the detector and swab my hands to run a test to see if I have touched any explosive materials. It's obnoxious and embarrassing, but I appreciate safety and wouldn't want it any other way once I'm up in the sky. Keep on patting us down security friends.

I'm no track star.

Airports tend to be huge. Yeah, I could take a wheelchair but that feels lazy. Exercise is good for me. But let's face it, I am lazy so I hate every second of it. This trip is just for the day so I don't need a suitcase which removes obstacle number one. I'm thankful for that.

However, I'm bringing my work laptop which is a heavy beast. It really isn't that bad when hauling it between work and home but doing a marathon airport walk will be different. It's hard to explain...basically the backpack weighs down my shoulders, which makes me lean harder on my crutches. I resist not hurting my arms by standing straighter and I get tired. I told myself I should fill my backpack with a gallon of milk or two and walk around the neighborhood to get strong.

That's as far as I ever got.

When I started my job I requested the lightest computer they had but didn't want to be picky. I was just thankful I scored my position and I didn't want to be a high maintenance employee. I'm hoping after a few years and I've done my time I can see what else they have that is lighter. Well, just in case my backpack milk exercises fall through.

What is traveling like for you?

*Follow my journey: www.mylegisnotbroken.com

hungry?

rachski79 — Tue, 30 Aug 2011 17:03:13 GMT

Grocery shopping is the worst! It was always such an event in my house. I like to think that maybe I'd enjoy it if I could do it alone, but my guts says I'm kidding myself (check out my first blog which explains why I can't). Our trips were a hassle and I always felt guilty. Perhaps it is the stereotypes we grow up with, I was supposed to be the little lady who filled the cabinets and prepared meals. That leads to another issue, I also hate to cook. It's a miracle that someone wanted to marry me. I'm no June Cleaver.

On the bright side, I am always happy to clean or organize cabinets. Make a big mess and I'll clean it with a smile.

Our grocery shopping trips followed the same routine. My husband would come along to push the cart. Together we wander up and down the aisles tossing stuff in the cart. Then we would get to the checkout and stand in line forever. My husband would unload 95% of the stuff to be checked out while I attempted to help. Afterwards he'd push the cart to the car and load it up. Once we got home the process started again and he would take trips unloading all the bags while I held the door. I made a point to always put everything away since he did all the work up to that point. Once my son was born it became even crazier since he was hauling groceries and our son. UGH

When I was pregnant I decided to first try Peapod. I went to the site and browsed the aisles of food from the comfort of my couch. All I had to do was click what I wanted, select a delivery date and before I knew it the truck pulled up and brought my groceries to my front door.

It was amazing. I was in love.

Using Peapod meant one less chore for my husband and one less thing I had to depend on others to do. When I lived alone I would grab items from the store if there was someone to take me, otherwise I'd just buy a few things here and there from a store within walking distance. I'd buy as much as I could carry. I'm sure you can imagine how much milk and protein I was getting during those years.

Peapod is not always cheap. You are paying for the convenience but I have found ways to make it work. I watch for sales on the items we typically purchase and then I'll buy a bunch. They offer great promo codes on their Facebook page and with each order you get a coupon for next time. I usually end up paying about $3 for my delivery fee which seems well worth it. We occasionally will take a trip to the normal grocery store but it's become clear that it is not worth the hassle. I can now do all our grocery shopping while eating my lunch at work, on my phone app right before I fall asleep in bed, in the car waiting for train, ANYWHERE!

During the winter months I have always dreaded the wet, slick linoleum floors at the grocery store even though my husband is great at giving me a shout out for upcoming wet patches. I bet the majority of you have never thought about how the produce aisle is risky terrain! From dragging a baby out in the cold, having my husband do all the work and the waste of precious time it took out of our evenings - it just was not worth it.

Next time you feel like grocery shopping from your couch, give Peapod.com a try. I promise you'll love it too.

meow

rachski79 — Fri, 26 Aug 2011 14:47:03 GMT

Our house has been crazy. My son has a bad summer cold, cough and pink eye. He is also getting his last two teeth so he's an uncomfortable drooling machine. Imagine doctor appointments, a needy toddler, screams over eye drops and frustrations over missed work {my husband gets the gold medal this time, since now he's behind}. I'm sad to report there is more. My mother-in-law had her knee replaced today. I received an entire year's worth of contacts in the wrong prescription which led to phone calls and hassle. My brakes are being redone after a verbal wrestling match over a bad attempt at round one of replacing them. Oh, and I squeezed in an orthodontist appointment over lunch. That's life and it's only Thursday.

A few days ago I saw a bunch of Facebook posts about a kitten diagnosed with AMC. At first I giggled, it is kind of funny and bizarre.

http://network.bestfriends.org/17566/news.aspx

I got the link again through web alert searches I follow. In the past I read something about Arthrogryposis being called Curly Calf Syndrome but never gave it much thought. Once this link crossed my path again, I actually took the time to read it.

This sounds weird, but it made me really grateful. I am glad to be human.

We have doctors, therapists, family, splints, braces, casts, and the world cheering for us to succeed. If this Tiny Tim critter crossed our paths, many would just say, "ehh it's a cat, put it to sleep." I will confess that I would struggle with the same thoughts. I've watched a lot of episodes of Hoarders with crazy pet owners. Sometimes it's best to let them go before they end up in the wrong hands, living in filth and found under a pile of junk. Cold, I know. I'll blame TV for my icy heart.

Thinking about animals with AMC made me think of past operations and the fantastic care I received at Shriners Hospital in Chicago. The hospital staff taught me when an operation made me miss school. There was always someone around - perhaps a nice nurse, a friendly Shriner or maybe a crazy clown, someone to make me smile when I missed my mom and wanted to go home.

They let me pick out my favorite scratch-n-sniff sticker to stick inside my mask that would put me to sleep for an operation. The examination room ceilings were decorated in happiness. I can close my eyes and still see colorful posters with rainbows, horses and big fluffy cats. I would lie on the bed and gaze at the posters while the vibrating saw cut off my cast. I remember it looking like a pizza cutter spinning super fast. It was not scary though. The doctor would show me how it wouldn't cut my skin, reassuring me that it stops when it touches anything soft. The time they took to address my fears made me strong. Taught me to trust.

My memories of surgery, hospitals and therapy are happy. I was drenched with love, compassion and the riches of people eager to use their talents to better another life. Remembering my childhood makes my bad week seem not so bad. Life is really good.

buttons

rachski79 — Sun, 21 Aug 2011 04:30:13 GMT

Kids love crutches. They always want to play with them and ask lots of questions. Most of the time my son Oliver has little interest in them, he is around them every day. He’s into trucks. He has pointed to my crutches and said “momma” so I know he gets that they are mine. He also points to diet Mountain Dew cans and says “momma” which makes me cringe. *addict

I anticipate there will be a day when he’ll ask more questions. There will also be a day when he is a teenager and will wish his mom was normal. Being different at that age is not cool and parents in general are lame at 13, so my odds are really stacked against me.

In the last few weeks he has become more observant. The other morning I was fixing his hair and getting him dressed before going to daycare. He grabbed my hand and stared at it. He poked my wrist where it is bent and then said “momma” and smiled at me. I almost cried. It was another sign he was getting older and his grin was so dang cute.

Oliver inherited a shirt with way too many buttons. It’s a total hassle and in my dream world we would use Velcro, seems much simpler if you ask me. This shirt is cute though and I like cute clothes. I’d give up food and running water if it meant another outfit. So I slowly tackled the buttons that morning while he was distracted by cartoons. That night I went to give him a bath and my husband left to run some errands. Here I was battling this shirt again and let me tell you, it was looking a lot less cute at 7pm on so many levels. After a day of drooling and playing outside it was wet and gross. I quickly learned that damp clothes are even harder to unbutton.

My son leaned against me and let me fight my way down the row of tiny little buttons. I was about halfway down when he looked at me with his big blue eyes and grunted, “momma stuck.” He seemed concerned for me and my battle with his shirt. During perfect moments like that, camped out on the floor next to the tub, it seems like he knows more than we think. I like to believe that God gave him a little reminder right before being born that he needs to be patient with his mom. Once and awhile he remembers and gives me the extra time I need. Good boy Oliver. Good boy.

Check out my blog: www.mylegisnotbroken.com

Great America Blues

rachski79 — Fri, 19 Aug 2011 01:53:06 GMT

It was recently my birthday. This year I picked an outing for the day to Six Flags Great America. I haven't been there in a good seven years and always loved the thrill of a roller coaster. Soaring through the wind. Up and down, flipping around through the air. Everyone unified by the thrill of the ride. Good stuff.

Great America had always impressed me with the accommodations they had for us with disabilities. You could go up the exit and they would get you on as fast as possible. If it was not really busy they would let you stay on twice.

When we got to the park we stood in a huge Guest Relations line for 20 minutes to get the pass to go up the exits. Then we headed off to the wheelchair rental booth. My wonderful husband pushed me around the park to save my poor armpits. {that alone is the best birthday gift ever}

The wheelchair cost $25 and then they wanted another $50 as a deposit {gulp}. After dropping a wad of cash in a matter of seconds we headed off to start our day. The Superman ride was first and my husband pushed me up the exit ramps, navigating past swarms of teenage girls and families making their way down. We noticed that as they came in contact with the wheelchair they became almost paralyzed and stopped. This just added to the congestion and the awkwardness of it all.

Up at the top we handed the ride operator our slip and they informed us that we could come back in 45 minutes. WHAT? You want us to go up and down that long and winding ramp again??

I was sad to find out the procedures changed this year.

New Rules:
You go up the exits and get your time assigned - this is based on the average wait time for the normal line. Then you either stand there and wait {and be in the way of all the people exiting the ride} or you make your loved one wheel you back down and then back up when it's your turn to go on the ride. There is no staying on twice and some rides don't let you come back for a certain amount of hours.

In the past there were times when I felt guilty being able to skip line but my husband would always remind me the obvious. The people in line have strong bodies. They don't use crutches to walk. They are not getting sores on their armpits from standing in line. I need reminders like that to help me swallow my pride.

While waiting our 30 minutes to go on the Viper we got to know a lady there with her son and husband. Her son was in a wheelchair and had a condition where he does not sweat. So waiting for 45 minutes to get on a ride just doesn't work. He needs to get inside after an hour or two to regulate his body temps. In addition to tending to her son, her husband was a quadriplegic. Going up and down the exits, standing around waiting, lifting her son in and out of rides and worrying about how long he's been outside just seems like a lot of weight for her shoulders. No worries, this lady was blowing down any walls that tried to stop her from giving her family a few hours of fun. She ended up raising a scene and getting a special pass where she got on the rides instantly.

I'm disappointed that it takes just that for a person with special needs to hold their own at Great America. I was also disappointed that once you come back up for your turn you have to hunt down a ride operator, explain yourself again and then wait another 15 minutes until they get you on.

The person who changed this policy needs to try it out for a day. They might start to think it was their worst idea yet.

Please visit my blog: www.mylegisnotbroken.com

mylegisnotbroken.com

rachski79 — Wed, 17 Aug 2011 15:34:40 GMT

I use crutches to walk. It may sound weird but I often forget. When I dream, I never have them. My body is strong. During the day it doesn't cross my mind until someone on the street, in the elevator or at the store asks how I broke my leg. That's my reality check that I'm not normal. Some days it makes me mad. Some days I don't mind. It can lead to a new friend or become an unspoken reminder that their life could be worse.

Having Arthrogryposis is a part of me but it does not define me. As a 30-something I found there's not much out there for us gals when we want to start a family. It's scary and you want to find someone who has walked in your shoes. So here I am. On my journey to meet others and band together. Now that we're buds. I'm sorry...I lied. It's impossible to forget that I'm using crutches in the summer. Tank tops hurt. Ouch.

I am not sure where I'm going with this whole thing blog thing. I always wanted to write a book but now I am not sure that's what I want anymore. I really don't know what I have to say that could fill an entire book and I struggle with putting my life out there. I spent my whole life working towards being normal and now here I am wanting to write about how I'm not. There are a million people out there with challenges and disabilities, so I have waves of feeling not worthy. I am certain there are much more interesting issues out there that merit a blog, book or your time.

With that said, I'm still here. I love to write and I think I have some good stuff to say. Thoughts roll around in my head all day long and when good topics come to me I whip out my beloved iPhone and send them to myself for a rainy day when I will add them to my "book"... Sadly, my folder of these emails have grown out of control like my closet often does. I just continue to ignore it for another day. {shame} I am guessing I have over 100 pages typed and collecting cyber dust inside my computer. Work, family, raising a toddler and life in general have gotten in the way.

So here is my story. Here is my life. Bear with me as I have no idea where I am going. Be nice to me as I wear my heart on my sleeve. The Bachelorette this season says "no regrets" and being the intellectual giant that I am...I think I'll quote her. You can't really know someone by only showing part of yourself, so I am hoping to be transparent in the hopes of gaining readers, providing some hope and the most out of this blogging adventure.

Check out my full blog: www.mylegisnotbroken.com