It's Not Always Sunshine & Rainbows

I know, my posts here are always uplifting and and positive. It mostly likely portrays my life as:

Sunshine & Rainbows

Let me assure you, it is not always that way. At this very moment, I am feeling much more like this:

Confused

Now, I do not feel this way in every aspect of my life. My life as a whole is great. However, there is part of it that I wish were a little bit easier and less confusing. I deal with a lot of minuet pains due to having a lot of spasticity and increased muscle tone in my lower extremities. Some occur only at night and others whenever they want to. I have dealt with them for years. I have finally succeeded in getting one of the major ones under control with the help of my doctor - because she took the time to listen to me and understand what I was saying. 

However, it is not always that simple. Sometimes, I don't even know what to do or who would be best to talk to. I know what is available for me to try, and I have tried some things. They work for only a little while it seems. 

I remember the days when it seemed easy. It was easy for me because I was not the one making the important decisions. My mother was and she did a great job. We had comfort in the team of doctors I had as a child at Shriners Hospitals for Children. Where would we have been without them? I don't know. Do I wish I could go back to them now? YES! I trusted them and felt they never steered us wrong.

Now, here I am a woman. Those decisions can no longer be made by anyone else but me. This is where I become confused. I don't know what is best for me. Finding the right doctor for such a conversation seems like a joke at times, but maybe I have found them. Maybe they will listen and help me to make the best informed decision I can with the options I know are out there.

Sometimes, I want that special someone there to cheer me on when I have tough days. [Not that my friends and family don't], I just want that part of love from my spouse. I deserve and pray I find it one day soon.

So, there you have it. A little more of me in a not so cheerful light, but rest assured; I will overcome. I always do.

Humbled.

Humbled.

Yes. I am. I have been following a fellow blogger for nearly three years now. She and I quickly became cyber-friends after she introduced me to Cerebral Palsy Family Network and asked me if I would be interested in writing for them about living with Cerebral Palsy. Her name is Lisa Viele. 

During the past three years I have learned a lot more about Cerebral Palsy and how everyone's challenges are different; not just the individuals but also their families. I use to always think this kind of life was a "piece of cake" despite the challenges my family and I have endured, but it is not always that way. It is not always as easy as I have been fortunate to have it.

Lisa's daughters' story is a perfect example of this for me. Lizzy is 15 years old. Lizzy cannot speak and is also legally blind. She has seizures. Her mother cares for her 24/7. Remember, I just said that I thought this was easy. When I began to read Lisa's blog and chat with her via Facebook I started to realize that was not the case for everyone. I quickly learned that sometimes it is extremely frustrating trying to figure out what is wrong with your child or to understand what the doctors may be telling you in regards to what is best for your child and their well being. 

I have always bragged on my Mom and what an awesome job she has done over the years regarding my medical decisions growing up. She did the best she could with the information given - just like Lisa has for Lizzy. Today. Today it hit me. It was somewhat easy for my mom and myself because I could tell her when and where I was hurting and what degree of pain I was in. It was not a guessing game for her. She didn't have to hope that medicine worked because I could tell her if it did or not. I am 100% aware of what is going on in the world around me, meaning, the world we all live in and the world of living with physical challenges. I have always known what the doctors were talking about when it came time for surgery and how intense therapy would be. I still know what I need to do to keep myself healthy and am able to fully take care of myself on my own. I will say, this was not a certain milestone for me as my mom was not sure I would be able to do so with certainty until I was in my late teenage and early adult years.

So, today I am thankful and I am humbled to be where I am in my life today. I am so blessed and blessed to have such a sweet connection with Lisa even if only through cyberspace [for now]. I cannot thank her enough for sharing CPFN with me three years ago, and for the friendship that continues to grow. I am thankful to know that it is not always a piece of cake. I am thankful to know it's okay to write about the not so good times. [I always hide those].

Thank you Lisa and Lizzy for humbling me. I love you! May we always find strength in our faith and each other!

You can read more about Lizzy's journey here at: Diving For Healing

Living Independently

My journey to independence began at the age of eleven with the help of wonderful doctors and physical therapists at Shriners Hospital in Lexington, Kentucky. I spent 2 weeks of my sixth grade year there learning how to transfer to and from the bed, toilet, and shower. Also during this time I learned how to fully dress myself. This made getting ready for school at 5 a.m. a whole lot easier for all involved. While I got dressed Mom or Dad could get breakfast ready which ensured plenty of time to eat before boarding the bus in the morning. At first, I had to have someone spot me during transfers to ensure that I did not fall. As time went on I was able to complete the transfers totally on my own.

A year after graduating from high school at age nineteen I made the decision to attend college 3 hours from home at MTSU in Murfreesboro, Tennessee. There was a lot of planning that was involved in making this decision a reality. I had to make sure that I would be staying in a dorm that was accessible and get help with transportation for errands I would need to run. Thankfully, the campus is relatively accessible to wheelchair users. My on campus apartment was a little on the small side, but I was able to manage and make everything work for my benefit. I had a caretaker come in twice a day. In the mornings they helped me get everything ready for the days classes and prepare breakfast, and in the evening they helped me prepare dinner and were there while I got settled in for the evening.

After living in Murfreesboro for nearly three years I moved back home. I stayed with family and a good friend for the first year after returning home and then in the summer of 2006 I moved into my own apartment. I still remember the excitement of being on my own and truly having my own place. It was a thrill! I lived in the apartment for three years before finally purchasing my first home in the summer of 2009.

I have lived in my home now for five years. It is a double-wide mobile home. I knew the moment I rolled into it I was going to buy it. Minimal modifications were needed to make it accessible, for that I am grateful!

Today, I want to share with you through brief descriptions; some of the equipment and appliances that have made living in my own home possible.

• Front load washer/dryer: This is self-explanatory. Using a front load washer is idea for those who are wheelchair users because the washer/dryer is sitting at our level and we can just toss the clothes in with ease! Laundry quickly became one of my least favorite household chores but I am thankful I am able to do it.
• Foreman Grill/Toaster Oven/Crock Pot: These three items made cooking meals possible for me. I am no longer just the queen of the microwave! I am now able to make items such as hamburgers, chicken, pizza, pintos..etc.
• Electric Recliner: This is my spot in the livingroom. Ninety percent of the time this is where I can be found cuddled up in a blanket watching TV or gaming. These recliners are true blessing for those who are disabled or elderly. It allows us to be able to change our seating position and relax without the worry of being stuck because we cannot push the recliner back down or because we cannot hold the recliner back in the reclined position.
• High-rise toilet/Hanging Shower Caddy: These two items have been a tremendous help in my independence as well as my shower seat. The high rise toilet seat makes transferring a whole lot easier because it is level with the height of my chair and also eliminates the need for seating over the toilet which allows more space. The shower caddy, well it is also self-explanatory. I have one on an extra shower rod inside my shower. This eliminates clutter on the edge of the bathtub and puts everything needed in reach!

I am very thankful to have been given the opportunity to learn how to live on my own and for the overwhelming support I have received and continue to receive. Living independently with Cerebral Palsy is one of my biggest accomplishments and having a positive go-getter attitude has helped me get where I am today. This journey is one that will continue for a lifetime. For I will always be learning to do new and different things!

Cerebral Palsy Family Network

Along with keeping this blog, I also write for Cerebral Palsy Family Network. There I have written about what life has been like living with Cerebral Palsy. I have written about challenges I have faced and triumphs along the way. Each time my blogs are published there I post the link here as well. In case you have not had time to read them all, I wanted to post the link to all I have written for them.

I hope you enjoy reading them as much as I have writing them. Also, please feel free to leave me feedback. I like knowing what others think or even if it helped you in some way!

http://www.cpfamilynetwork.org/?s=crystal+mcclure