My dream for this blog was to network with other AMCers to share tips, inspire each other and bring awareness to those “normal” peeps on what it’s like to have a disability.
So when I receive messages from readers, I get really excited. I got one this week on a topic that I think we all struggle with…OPERATION SKINNY.
Well, there are those girls who seem to be able to eat everything and anything and remain tiny, cute and chipper from the latest sugar cookie high…but we don’t like them. They never had to lie on the floor to button their jeans. {wink}
Maintaining weight takes work, willpower and dedication. When your ability to move is limited, this adds a whole new twist. A fellow AMCer who uses a chair asked for some tips on losing weight. I am hoping you can comment on here and share what you do to stay healthy.
The level of mobility we have impacts so much. We are all different, but to get things started, I thought I’d share the things I try to do. However, I love pizza..fries…ice cream much more than my 5’1 frame needs…so these are just the things I know I should do, when I’m not being a pig. 🙂
I love this thing and like to track my steps. It inspires me to take a parking spot at the end of the lot or walk a few laps around my neighborhood at night instead of surfing the web. Yep, picture me doing laps around the hood with Carly Rae Jepson belting out Call Me Maybe in my headphones.
Basically, I try to not let my head hit the pillow at night until my 10,000 steps have been walked. I was on a roll and then work became busy and followed me home, my son got sick, I got sick, a new show came on TV, etc. I have officially fallen off the wagon. I need a kick in the butt to get back on.
This website and iPhone app rocks! You can scan the UPC bar on packages and it calculates the nutrition. You can also search for food or manually enter calories.
Set goals for your ideal weight and it will help determine the calories you need. I usually eat whatever I want but when my calories for the day are gone – I am done eating. I found it made me become much more thoughtful about what I put in my mouth.
Both of these tools incorporate social media and the option to add those you know as friends. This helps motivate me and makes it a little bit more fun. What works for you?
I recently “met” a fellow AMCer and despite the fact we live in different countries, we were instant buds. Through our chats via messenger and email it was like we were the same person. She understood me. While every AMCer seems to have their own unique spin of symptoms and severity, we still shared much in common.
Nichola found me on YouTube and when she showed her flatmate the video of me doing my hair, they laughed since she wondered what the heck Nichola was doing when she found her lying on the floor doing her hair for the first time. It feels good to know there’s a group of girls out there who share my ponytail woes.
Without further ado, let me introduce you to Nichola Smith, a 30-something gal from New Zealand. She is a nurse who focuses on the education side of the profession. She is the epitome of the word amazing.
Her life motto is “Use Your Voice.” We are given a powerful voice that WILL enable others to achieve, and the voice she has is no quieter because of AMC.
I asked Nichola a few questions about her life with AMC. Here’s what she has to say:
ME: Does anyone in your family have it? Did your mom know that you had a disability before you were born?
NICHOLA: Mum never knew I had physical issues, but she did notice that I was much less active in utero, and she just had a ‘feeling’ something wasn’t right. I was born by emergency c-section 8 weeks premature, and fought for my life. We obviously know how that one turned out. I still have my very first casts, they are tiny!!! The doctors and my earliest orthopedic surgeon told mum and dad not to have any more kids, as I am the eldest, but I have one younger brother and two younger sisters who are all fine.
ME: What is one thing you have always been envious to do?
NICHOLA: One thing I have always been envious of is being able to do my hair. Hands down this is the biggest thing I think. I’ve always had boring ponytails, and they are very difficult to do at the best of times. I would LOVE to be able to put my hair up wherever and whenever I wanted without lying backwards!! I’m always captivated by others when they do this.
ME: What is one of your fears?
NICHOLA: One of my fears is if we were ever in a war and I wouldn’t be able to run away, or I’d be a burden to others. This terrifies me.
ME: Do you want to marry a person with or without a disability?
NICHOLA: My ex-husband was ‘normal’. He was awesome, helped me out heaps and was very patient. He got very good at doing my hair. Over the years I learned to let him help me more. Admitting we need help is very difficult. We are now divorced and I live with my border, Chloe, my dog and 3 cats.
ME: Do people often ask about your disability – how do you explain it?
NICHOLA: 99% of people presume I have rheumatoid arthritis, and they ask me about it. I rarely correct people now. People can tell there is something wrong with my feet/legs (I don’t always use crutches), and I answer questions. The most common one is if it is painful. I tell people that my feet do get sore. I don’t like talking about it too much as it draws attention to me. I just get on with it despite the issues.
ME: Are the any special items that you use?
NICHOLA: I have a Tom, a Dick, and a Harry. They are my shower and toilet chair and my rails outside. My crutches are called Betty and Bertha. I hated having to use all these things, so I figured if I gave them a personality it might make me feel better about it.
ME: If you could be granted one wish and could be “normal” would you do it?
NICHOLA: Granted one wish??? Be pain free. Hands down. The pain I get is awful, it radiates, the nerves then get confused and cause headaches, pelvic pain and back pain. I take heavy duty pain relief just to walk to the toilet in the morning. I am under a pain specialist. My feet swell enormously, go bright purple, and water, air, socks, bed sheets, etc hurt more than anything.
One frustration, is even medical professionals get it wrong, when it is written all over my medical notes. If they are not sure, all they have to do is ask!
My fellow AMC buddy Tracey shares my ponytail woes. Well, she shared them. This is now another thing she mastered.
Limitations are often the catalyst to conversations where great ideas flow. It inspires creativity. It pushes you to try. No one likes to be told no.
I love Tracey’s video showing how she found a way to pull her hair back without help. It’s awesome! I want to master this too – I recently ordered the 1-Up Hair Tie from Australia, I’m hoping it works. Stay tuned for updates!
There are so many different types of AMC out there, not one of us is the same.
Just like you ordinary folk we all face different struggles and offer up a unique blend of abilities. Just in a way more obvious to the world. We can’t rob a gas station and hide. They would so find us. Rest easy Mom, I have no criminal activities planned for 2012. {wink}
I have gotten the chance to meet some awesome girls with AMC through this blog and Facebook. I thought it would be fun to share some of their stories too. Maybe they will more closely relate to your world. Or maybe they will offer up a new perspective that touches us all. Regardless, these ladies are awesome and I’m super honored that they would humor my plea to share their story with the cyber world.
I sniffed out Sheree Clampit through a Google Alert setting. The article grabbed my eye and I opened it up. I loved that her journey with AMC had led her to be finalist for the Pride of Australia Courage Medal. I thought she was cool. She had cute boots! So I found her on Facebook. We became cyber friends. Now, I’m giddy to share her story:
Sheree Jenifer Clampit don’t wear it out! I came into this world (Australia and I am an Australian Citizen), on 11/03/1994 at 6 Pound 7 with a rare disability called Arthrogryposis, Multiplex, Congenita. (Arthro-gry-posis), (Multi-plex), (Con-genita) OR lets make it easy and abbreviate it to AMC.
There is no simple definition that comes with this disability so I’ll do my best and tell you the meaning of the larger medical terms, AMC: A rare congenital disorder that is characterized by multiple joint contractures and can include muscle weakness and Fibrosis.
Congenital or also known as Congenita, this means a physical abnormality that is present at birth.
A contracture is a permanent shortening of a muscle or joint.
Fibrosis is a word from Cystic fibrosis but I’m not 100% sure if people with AMC could get this, I do know that there is a chance that someone with AMC can be born with Cerebral palsy but luckily I wasn’t that severe.
I have the most common of Arthrogryposis where all of my joints are affected, such as; hands, wrists, elbows, shoulders, hips, feet and knees. My fingers are tight from short tendons so I can’t straighten most of them, my wrists are bent from the same thing, I have no muscle tissue in my elbows and only a slight bend in my knees, I also have short tendons in my toes.
Of course I can’t remember everything about myself as there is just so much to remember, I STILL even have to ask my mum what happened with some of my joints and why they aren’t working properly, you never stop learning about this disability there is always something that you could miss.
I have had 22 operations in my life, straightening my knees and turning them around the right way using long pieces of wire that went from my inner leg right to the other side. Having plaster from my waist down was to straighten my hips, as one of my hipbones was higher than the other. Releasing tendons in my ankles as I had clubbed feet.
Clubbed feet is when someone’s feet are turning outwards just like being bow legged but the opposite way. Loosening the tendons in my toes, fingers and wrists, my surgeon did put muscle tissue in my left elbow to make it bend, but it never worked out the way he wanted. I COULD go on for ages, I don’t know about you though but all this medical talk is boring me just a bit.
Shall we talk about family?
Ok well family is the most important as they helped me in anyway possible and they did a good job. My mum and dad were told that I’d never walk so at the age of 2 a surgeon was going to chuck me in a wheelchair and hope for the best (keep in mind that his brain capacity was nothing short off a gold fish). My mum and dad decided that they weren’t going to give up so they spent the next 3 years bending over helping me to walk and doing walking exercises with me, by the time it came around for me to start school I was able to walk.
Two years later my sister Natalie was born and has always been a cool sister! She treats me like she treats anyone else and that’s the way I like it.
About me?
Well I’d like to think I’m a nice person, caring (I care a little too much sometimes), I can be too generous as well, I apparently have a good sense of humor for e.g. You can get some disabled people/”normal” people who have an attitude like an asshole, rude and an ”its all about me” type thing, but I have fun picking on myself for a laugh, I don’t mind making a fool of myself, people say I have an ”I don’t care what people think of me” attitude because I really don’t. I love having fun, I hate moping around depressed. I’m not a massive shopper because of my height and shoe size, its not that fun, I’m 4”3 and a size 12 shoe in kids.
I do give myself big challenges, I just finished my year 11 and 12 at TAFE and got accepted to do Certificate IV in Youth Work. My view in life is that, don’t complain about what you don’t have when others are worse off than you.
I am who I am, Sheree Clampit and I will remain the original me!
xoxo
My leg is not broken... 