Living with Cerebral Palsy

If you are like me, you have days that just seem impossible. Even the things you can do are a lot harder and take more time. Sometimes, there is a real fun activity and you are stuck on the sidelines trying to be an enthusiastic spectator. But, deep down inside, you want to cry, because it’s not fair that you have to live with cerebral palsy, while “normal” people seem to take life for granted.

Then you see a video like this one:

Honestly, I think I have often set my own limitations, because I am afraid to crash and burn. Sometimes, it’s simply my self-preservation instinct-and rightly so.

The world is full of people with challenges-sometimes we can’t even see them. They look healthy on the outside, but on the inside they are not really living. Instead, they are just going through the motions.

Living with cerebral palsy doesn’t mean we have to be joyful about having a disability. It just means making the most of what we have and trying not to dwell on the things we don’t.

From the heart,

Tina

Recently, I have been getting some great comments and participation on the blog. I want to thank you very much! Keep it up! It encourages me very much; and, I hope it also encourages other readers.

Among the comments and emails are questions about my diet. It seems others have doctors that “pat them on the shoulder” and offer discouraging advice like: “Just push away from the table.”

Pardon me, but that is not good enough. I needed to learn how to eat to live with CP, NOT live to eat! I needed information about portion sizes, menu plans, and what I needed to include in each meal, in order to ensure a healthy new way of eating, for the rest of my life.

The New Page

Since some of you feel the same way, I have include a new page on my blog, with a link to download the documents my dietitian gave me. Of course, there are notes that are specific to me, because of my special needs, but the papers are for a 1500 calorie diet. (Of course, men need more because their metabolism is higher, and they burn more calories.)

Also I have included a link to a heart healthy cookbook. However, there are a lot more on Amazon.com, or check your local bookstore.

Remember, this is NOT information to lose weight and then go back to the old eating habits that caused a problem in the first place. The plan is to learn to eat healthy, get into the habit, and keep it up for a lifetime.

The Willpower Problem

Now, it’s time to make a confession. I have a willpower problem. Although it’s getting easier, I love fast food (I hate to cook), and I have a sweet tooth. So, I had to come to terms with both, or I couldn’t have lost an ounce.

First, I have discovered that most fast food places have relatively healthy items on their menus. For example:

salads

baked potatoes

bean burritos

baked chicken sandwiches

etc.

The real killer in fast food is the preparation. Stay away from the fried stuff. (Sorry, French fries included!) Avoid the dressings on the sandwiches, even if they are baked. Take it home and add ketchup or mustard, if you can’t eat it dry.

Don’t forget the Sweets!

Okay. When it comes to sweets, this is what works for me. If you have absolutely no self control, and will sit down and eat a whole gallon of ice cream, you may need to come up with a better plan. But,. . .

I allow myself a cheat day. Yes, it’s true. I pick Sundays because that is often when I go out with friends, and I especially don’t like to cook.

On Sunday, I eat what I want (unless I am medically supposed to stay away from certain foods), sweets, etc. The trick is to be VERY GOOD the other 6 days of the week. Then, think of it as a reward.

I find it better to plan a cheat day. Then, I am less likely to “fall of the bandwagon” and resume my old eating habits.

BEWARE!

However, be forewarned! Once you get into the habit of eating to live with cerebral palsy, and not living to eat, you will find it difficult to “pig out” on your cheat day. Once you start losing weight and your body begins to like eating healthy, you might make yourself sick when you go back to those favorite unhealthy treats. Moderation, even on cheat day is key.

The Best Part

Good news! The best part of eating healthier will not just be the loss of a few pounds. The best part is simply feeling better, on the inside and out!

I still haven’t reached my goal weight. I am a work in progress. I have been at this for almost a year. I can’t weigh on a scale, unless I go to the hospital, because of the chair. But, I have gone down 6 sizes, (50 lbs??) it’s easier to lift myself around, and I feel so much better.

I still have my chocolate candy bar, once in a while. I don’t really like fried foods anymore. When I eat at my mom’s (she is the best cook), I eat a little bit of everything. Although I would like more, my body feels like I stuffed myself with the whole Christmas turkey! So, I quit.

The first few weeks are the hardest. But, it gets easier, especially when you start feeling healthier.

So, if you want to lose weight and need a diet partner for encouragement, you know where to find me.

When I was growing up, I didn’t know anyone else that had cerebral palsy. The only time I met people like me was when I went to the state hospital in Nebraska or Shriner’s Hospital.

As an adult, I actually met individuals that thought I shouldn’t be working, or at least in an office in the back. One lady actually told me that normal people should not have to be reminded of those with physical or mental disabilities.

However, the worse experience was telling a mother how to get a handicapped sticker or license plate for her car. She had a daughter with a disability. However, she walked away sad, after telling me she could not send medical information to the state DMV. When I asked why, she simply said that she didn’t want people to know she had a handicapped daughter.

HOW SAD!

I went home and called my mother. I thanked her for loving me, raising me to be as independent as possible, and being proud of me. For those readers who have met my mom, you know she is a very humble person.

Her answer to my thanks was a simple assertion that she only did what any mom would do.

WRONG!

Ladies and Gentlemen, I don’t believe God makes mistakes. While we may not choose to have disabilities, we are not substandard citizens either! We were given life, with a reason to live it.

NOW WHAT?!

So, now what do we do? Well, for my part, I have spent the last 2-3 hours signing up for every social networking site I know. (35-40) In addition, I now have a program on my blog that will send all of Living with Cerebral Palsy posts to these sites automatically.

Maybe we did not choose to live with cerebral palsy; but, we can be proud of who we are! I am. Are you?

Growing up, my mom used to tell me there were people that were worse off than I was, when I began to feel sorry for myself. The longer I live with cerebral palsy, the more I can see blessing amidst adversity. I want to share with you a couple of stories of how I have been blessed this week.

Adversity Times 10

Today, a friend was able to come back to church after a long absence. She had to have part of her leg amputated because of cancer. She was now in a wheelchair like me, but she had a smile on her face. She is a survivor!

One of my best friends, much like a second mom, has a daughter fighting cancer too. She is in the fight for her life and had to start yet another chemo treatment this week. How she struggles! What do I have to complain about in comparison?

Long Story Short

I have a question: would I truly know how much my life was blessed, if I did not have the challenges of cerebral palsy?

After my husband decided he wanted out, I took our two small children, came home, and went back to school to become a high school English teacher. I worked really hard to get excellent grades, despite my physical challenges, because I knew it would improve my odds of getting hired at the end of the day.

But, while I was making other plans, I believe God was exercising his own. In 2007, I broke my knee in a car accident. I could not continue substitute teaching or applying for job openings. So, I started freelance writing full time to support my family.

Well, I would like to say I became a smashing success. But, it has been difficult. I decided to keep writing, because I was diagnosed with non-active osteoporosis. I live in the North. So, if I fall in the winter transferring from my chair to the car, I wouldn’t be able to take care of myself or my kids. It takes a lot of writing to pay the bills, and some of you may know what it is like to start a new business. Not being a businesswoman, I have a LOT to learn. It takes a lot more than the ability to write articles to succeed as a freelance writer.

Blessed Beyond Measure

Fortunately, even though economic times are a little tough, I have been blessed beyond measure with wonderful friends and family that remind me of how truly blessed I really am.

Friday night, I drove down to the bottom of our street and realized we had a flat tire. Well, I am as independent as possible, but I needed help.

I called a friend to help me get the tire repaired or purchase a new one, if necessary. He and his son were more than willing to help. They took the car to get a new tire. However, when I got the car back, I had 4 new tires. Seems my tires had something called ‘dry rot’. My friend and his wife decided that it wasn’t safe for me to even drive around town. They ‘gifted’ me with the tires, knowing that I could not afford them for at least another month or two.

When returning the car, I was asked where I was taking my son, when I discovered the flat. Now we could go. While we were getting ready to leave the house, my friends returned home. So, I did not know, until I started the car, that they had also filled my half empty gas tank.

Getting to the Point

So, why am I telling you my story? What does this really have to do with living with cerebral palsy? After all, a lot of women cannot change their tires or afford a new set. Able-bodied people also have helpful friends.

For whatever reason, I was born with cerebral palsy. But, I know that God did not make a mistake. I can think of many people I have met and experiences I have had that would not have happened, if I did not have cerebral palsy.

This is my point. Please do not spend your life dwelling on your disability. Look for the many blessings in you life amidst the adversity. I can guarantee there are some, even if you have to really think about it for awhile. As for me, I am blessed and humbled by events of this week.

Already Encouraging!

I received my first comment on Living with Cerebral Palsy already! I do not know if you understand how Internet search engines work or how new sites are picked up; but, trust me when I say that having a reader after only a week is absolutely amazing! So, it is already time for me to ask the question: How do you Live with Cerebral Palsy?

It’s not just About Me

No. I am not being nosey! I had teachers like that in grade school. Do you remember assignments asking to tell them something about you life? I hated it!

However, if this site is truly going to be a conversation about living with cerebral palsy, I do not want to do all of the talking. If you have an experience that you think might be beneficial to other people living with this disability, please share. I will post it on the blog, with your permission of course.

Alternatively, if you simply want to talk and meet someone that lives with challenges that a lot of individuals do not totally understand, please contact me. You can use my direct email. I am a freelance writer. I am on the computer every day, sometimes all day, and I will get right back to you. Simply click on the email button in the contact page and you can bypass the blog comments.

You see, I do not want this site to be just about me. Yes, I will write about aspects of Living with Cerebral Palsy that has impacted my life. I will be glad to use myself as an example. But, what you go through on a daily basis is important too.

Keep Encouraging!

So, keep those comments coming! Let’s start a conversation about living with CP and making the most of this life we have been given.