Good News & New Wheels

Last week, I wrote about having to have a CT this week (Wed). I had been anxious about said scan for a few weeks. Waking up some mornings crying, wondering if everything was really working, if everything was really as good as it seemed to be. Feeling in essence, like my life was on a timeline. Battling loneliness that no one can fill but that special someone.

Well, I am happy to write that I have good news this week. I had trouble the morning of the scan, my port would not give a blood return so finally I just let them stick me with an IV to run the contrast dye. That was not pleasant either. I had to be stuck 3 times, it was very frustrating, but as always I was the cooperative patient and didn't go off on them even though in my mind I really wanted to! Dad and I went to Denny's afterward for breakfast because I was starving. I couldn't have anything to eat or drink that morning. That afternoon, I was sitting at my desk and the phone rang.. it was TN Oncology. I started not to answer cause it was odd to get a call from them in the early afternoon. I picked up the phone and said, "Hello..." ..."Yes, Crystal this is __________ from TN Oncology I have the results of your CT scan." "Okay..." "You're responding nicely, I will discuss with you further when you come in." I hang up and have a well deserved sigh of relief.

Thursday was also a big day. I got to pick up my new wheels that I fought so hard for. It took 2 regular appeals and one emergency appeal to get it approved. I remember getting a phone call a few weeks ago telling me it had been approved. I cried like a baby. I have wanted a sports chair for a very long time and all my hard work paid off to get it.

The two gentlemen in this photo are Thomas Henley, and Greg Monk. They have been a blessing to my family for the last 29-30 years, helping us in any way they can. I am proud to say I was one of their very first clients.. and remember my very first chair I received from them. It was red just like my old one. I have to say though, by far this new chair is my favorite. It is going to take some getting use to, but nothing I can't master. I mean, if cancer can't even bring me down how can some new wheels? Ha!

Seriously, if you need assistance getting your child/loved one a wheelchair, walker, stander, etc. and have Medicaid go see these guys. They are amazing and truly care about the people they serve. They are not just guys trying to sell you something to make a profit. They genuinely want to get to know their clients on a first name basis and learn all they can about each individuals needs. If you meet them, you'll become fast friends, and before you know it they will be like family!

Blessed

This past week was my off week from treatment. I felt great nearly all week and was able to get in some much needed sister time!

Most importantly this week I realized how truly blessed I am. I have been doing very well about writing in my prayer journal everyday, and I have noticed quite a few of my prayers have been answered this week. Often times, I don't take time to stop and think about what I have asked God for, and notice if it came to pass or not. This week, I have tried my best to pay attention, and have seen things come to pass.

One day I asked God to let me have a good appetite. This prayer was answered almost immediately. I had 3 good meals that day and when I said my prayers for the evening I made sure to thank Him for answering this small prayer for me. Having a good appetite makes a big difference in the day. I also asked for pain free days, and everyday this week has been pain free except for two very short,  intense spells mid week.

Through these little prayers and giving thanks I received a big blessing this past week! On Friday, January 15 I received an unexpected phone call from my Nurse Practitioner. I thought she was just calling to check in and see how things were going as this is how the conversation began... then she says, "Have you heard the news?" I've no clue what she is talking about... she reads me the letter...

My new wheelchair was approved!!!

I instantly began to cry tears of JOY! I did not expect to hear this anytime soon. We had just submitted an emergency appeal the week before and I didn't think it would go through honestly. Apparently, God had other plans ya'll and I am so glad. I should have my new wheels around the second week of February! I am looking forward to getting them. Everything is going to be so much easier as far as being transported... Mom will be able to put the new chair in her car a whole lot easier than my current one. It's going to be a lot easier for me to get around in as well.

Pictures to come as soon as we pick it up!

Love & Hugs,

Crystal

Sometimes You Have to Laugh

I had to laugh today. I went in the kitchen today to get a drink and check the Keurig. [It is usually full of water just in case I want oatmeal for breakfast.] Well, it was not full so no oatmeal today, but that is perfectly fine. None of this I am writing about was intentional.  Yes, I know I could have made it in the microwave but the Keurig is much more convenient. So, I go to the refrigerator for a drink and this is what I see. A shrine of Coke, Dr. Pepper, and Yoo-Hoo's that are out of my reach. All I can do is look at them. (Mom sets a glass of tea, and/or a Coke in the door for me).

While this was a bit frustrating for a moment because I could not reach what I wanted; when Mom got home we laughed about it. I was not mad at her. Sometimes, when the little things frustrate you, its best to laugh them off and move along. It is not worth getting mad over. I have many of these moments in my life because I use a wheelchair. I am so glad that I have learned to laugh them off and not get mad.

I would be mad all the time if I let all the little things like this bother me constantly, and that is no way to live life. I see posts about people who feel trapped because they cannot get out and about much...etc. I am so thankful and grateful that even when I get down and out I find a reason to smile through it. I pull myself out of the slump.

Thanks Mom, for the laughs! :)

What little things like this have made you giggle?

Accessibility Awareness: Public Restrooms

Growing up I did not pay much attention to how accessible places were for people with disabilities. Mainly due to the fact that someone to get me where I needed to go with no problem. However, as I grew older and began to do more for myself I began to realize how inaccessible many places were; especially regarding bathrooms.

An accessible stall should have handrails as seen in the picture above on the right. They should also have enough room for the persons wheelchair and a person to aid them should they need assistance.

The picture on the left was taken by me at a local restaurant. As you can see there are no handrails. Aside from not having handrails, I was unable to close the stall door after entering and positioning how I needed in order to be able to transfer. Friends I was with had to stand in front of the stall (with their backs to me) to give me some sort of privacy so someone else did not just walk in on me. To make matters even more complicated there was not enough room for another person to enter the stall with me should a fall have occurred. Situations like this are not safe for anyone with a disability or who is elderly. If someone were to fall in that stall there is no way for them to even try to pull themselves up. I did speak with the manager this afternoon and he was very unaware of this issue. He sincerely apologized to me for the trouble I had and said that he would make sure it was fixed, to give him about a week. I plan to go back in a few weeks to see if any progress has been made.

This is not the only time I have encountered such an issue as this where I live. There are several places I visit that are not truly accessible to those in wheelchairs or otherwise. I know this blog will not reach many people, but it is one way to raise awareness!

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!

Pampering Should be Relaxing

Let's face it, most all females like to be pampered once in a while. This usually consists of some shopping and most likely a manicure and/or pedicure. I am one of those girls. I do not have painted nails often because it is not something I do well on my own. [Trust me I've tried] So, ever great once in a while I have girl time with my sister and a friend and have my nails painted.

I am always satisfied with the way my nails turn out and it makes me feel girly as it should.

However, the process of having my nails done has never been a truly relaxing experience for me. You may be thinking, "Well, why not? I love going to have my nails done!"

This is why:

• I cannot roll completely under the manicure table.
• The manicurist usually seems frustrated with me because I cannot completely relax my hand.
• I have to lean way over the table which causes my back to hurt.

If I were able to roll completely under the table I think my experience in such a salon would be different. I would be able to sit more comfortably and not have to lean way over, nor would they have to pull at my arm all the time. And the manicurist would not seem as frustrated.

Thoughts ladies?

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

The New Ride! :)

This post has been a long time coming! Sorry about the poor quality of the picture and the sweater in the background. This is my new wheelchair that I've had for about a month now. It is a Quickie 2 XTender. The rear wheels have battery operated axles which makes the chair easier to push when I have the power assist engaged. It is like having two chairs in one. I can push it normally, around the house; or turn on the power assist when I will be going long distances, such as the mall. I really like it. It is truly the most comfortable and most awesome chair I've had! If I could, I would be on a billboard advertising this chair, Ha!

And let's not forget the color! It's Candy Apple Red. This just so happens to be the same color on Jeff Gordon's Drive to End Hunger Cheverolet. If you know well, you know that made picking that color worth it! :)

Four Wheels vs. Two Legs

vs.

What is the Difference?

• You walk. I roll.
• You run. I do the same with my hands using 2 wheels.
• You jump. I pop wheelies to get over bumps and uneven surfaces.
• You can stand up or lay down if you get tired of sitting. I am either sitting down or laying down.
• Anywhere is accessible. If there are no ramps and proper accommodations certain public places are not accessible to persons in wheelchairs. Restrooms being what I notice most.
• You can move through a crowd with ease. I have to say excuse me and hope people are polite enough to move.

What's My Point?

While I view myself as no different than the next person; these are a few of the big differences that I've noticed. They are really not a big deal to me, but when you take time to think about them and consider what I've said, you may see where I am coming from. 

Walking/Rolling: To me these are one in the same. My wheels are just like the two legs God gave you to walk on.

Running: I do the very same thing when I am 'going fast' in my wheelchair. Let me tell you, its a workout and tiring! :)

Jumping/Wheelies: While you jump for fun or exercise.. I pop those cool wheelies to get over humps and bumps. But ideally in my mind I'm jumping too! :)

Changing of Position: When you get tired of being one way or another you have the freedom to move around and get comfortable. I/we can do this too but it isn't as easily done. As stated it mainly consists of sitting up or laying down which at times can be a bit boring!

All access/Restricted or No Access: Most of the time you can go anywhere without restrictions of any kind. The same can be said for those of us in wheelchairs most of the time as well with the passing of the Americans with Disabilities Act. But, there are still some kinks and I have come to find that as I have grown into adulthood. Not all restrooms are accessible to those of us in wheelchairs even though they say they are. If a wheelchair cannot fit in the stall it is NOT accessible! Not all buildings are fully accessible. And furthermore, more places should have automatic entrances so those of us who want to shop there can come and go on our own. (i.e. convenience stores and restaurants).

Crowds: While you can maneuver through a crowd being heard saying 'Excuse me'.. some of us are hoping we are heard saying that just so we can get through. Or we're trampled on because people just don't want to move. I'm not saying this happens all the time. But it does and has happened to me. When ya see a wheelchair  coming through; slide over just a bit if your able. We would appreciate it. :)

Often times, people think it is "cool" to use a wheelchair, while it is a neat thing its not always cool to those of us who use them on a daily basis. I am saying that I don't enjoy my life? No. I'm saying like some other things in life; it's not all its cracked up to be. Sitting in a wheelchair for the majority of the day becomes uncomfortable and tiring. And, if there are seat belts and numerous other restraints on the chair one can begin to feel confined. Sure its neat to be able to roll where you want to go, but just as walking is tiring; pushing a wheelchair is just as tiring for us if not more so.

People have asked me numerous times throughout my life if I would like to be able to walk. For a time; I wanted to. Now, I don't. Why? I wouldn't be who I am. It's that simple.

People also assume that when someone is in a wheelchair that they are paralyzed and cannot move or feel their legs. I understand people make assumptions because they don't know or think they do. I'm guilty of us. But the answer is No, not everyone who is in a wheelchair is paralyzed. Many of us were born with a condition such as Cerebral Palsy, Spina Bifida, Muscular Dystrophy, etc. Or something happened later on in life like MS.

I am not sure if this made any sense whatsoever.. and if it didn't oh well. I'm no different than you. Your no different than me. We are all human! :)