Friday, March 30, 2012

Pets and Individuals with Difabilities

There are many things that happen when you start dealing with ongoing symptoms of your Cerebral Palsy. Some of them are good, if you have a team to work with. Some of them aren't so good.

One thing that does happen is giving up pets. My hedgehog Sonadow was adopted today by a very loving couple. That was very hard for me. But I had to get him to a family that could physically keep up with him and his cage.

It's hard, when you have to lose a pet, and no one knows that better than I do. I've lost countless pets to death, or having to give them up to move. This has recently prompted me to start looking into ways to take care of Murphy when it comes time to move to Florida.

Research has given rise to what Murphy really is for me. He is an Emotional Support Animal. ESAs are animals that add stress relief, activity (such as cleaning of litter box and making sure food and water are given), and to ease lonliness. Murphy does all of these things, and one thing more. Being unable to have children, he is as close to a child as I'm going to get.

Now I have to get my doctor to write a letter, stating that Murphy is an ESA, and must be allowed to inhabit a no pet zone. Keep in mind that not all cats can be registered as such. In other words, you can't just say, "Oh, I need him with me, because he keeps me comapny". In Murphy's case, I have noticed that I tend to scratch and pick less when he's around. This one cat has done more for me than I think any psychiatrist has done.

I never thought that of him, really, until I started thinking about it. And I love him so much. He's a good cat and best friend, and there are not enough words to describe how he has helped me deal with everything in my life both past and present.

Wednesday, March 28, 2012

A Few Slow Days

Hey folks. Sorry about missing a couple of days. I've been in so much pain that I couldn't focus on anything. Yesterday's physical therapy was torture, honestly. We had my re-evalution. I have improved in just a month.

Why do i mention this? Because I want everyone with some type of nueromusclar disease to see that physical therapy can really help. It doesn't happen over night, and even my improvement was small, but remember that you need to celebrate the smallest acheivements. These are just as important as the larger ones.

I've been struggling with my depression, and mood swings. I'm not sure if it's medication, or not. I have plans to talk to my doctor as soon as I can. But right now, I am dealing with so many other appointments, I can only handle one health issue at a time. This especially true because my mom is having to re-arrange her schedule all the time. And it's not fair to her. So I have decided to wait on that a little.

Please understand that I am feeling accomplished, but I am also feeling like the results I am getting are too slow. This is unacceptable to me psychologically. I am used to doing for myself, nd right now, I still can't do everything i would normally do. This is ordeal is definitely a test of my patience. And so far? It's not working well. Thank goodness I get to see Emily twice a week. This woman is fun to be with, and she helps me out.

I guess the moral of this entry is that you can learn to be patient, and that will help in the long run.

Monday, March 26, 2012

Creating a Pool of Resources

I'm not going to lie to you guys. I'm new to the advocacy thing. But one thing I am learning about self-advocacy is that it takes time, and patience to get the right people that can help you. You also need to understand how to talk to people. Don't be afraid to ask questions. You can't learn anything unless you ask.

In my time of researching specific agencies that deal with individuals with special needs, I have found that there are not many that deal with Cerebral Palsy specifically. Many deal with it a s if it's an umbrella term. And honestly, it probably is. For me, though, I have always just known I have CP, and not any specific type until recently.

Just like with anything you may be interested in, it is a good idea to network. Networking can happen at any time, and anywhere. Many people think networking an only happen on the Internet. Truthfully, it happens much better when you go out.

When you're out at your doctor's appointments, or visiting a favorite store, or where ever you might be going, ask questions. Find out where people have gotten that adaptive device, or how they're getting to their appointments. Knowledge is your friend, and when you're going through changes in your body, or have a child who is going through it, you want to know that others are there that can help you through it. You can never have enough resources. Ever.

In the next couple of weeks, I will be posting links to some of the Advocacy sites I have come across and contact information for those agencies. I hope to also connect with other bloggers on this topic, and pool our resources. Feel free to post your links here, and I will add them to my list!

Sunday, March 25, 2012

Transportation Complications

One thing I am learning from my latest excursion into rehabilitation is that it is important to have as many people as you can get in your corner. It makes the entire process so much easier. Living with Cerebral Palsy is challenging. So what is a person to do?

You have to have good resources of information. My family and I are moving to Florida any time now, and so I have been scrambling to find resources for Cerebral Palsy so that I won't be stuck waiting on people to be available for a ride. Going down there without having any friends or anything is going to be hard enough, right? I shouldn't have to limit my transporation too!

So for the last month or so, I have been trying to find the right resources for me for Florida. If I had done that type of stuff when we'd moved to Maryland I probably wouldn't be so hard pressed for a ride that doesn't stand you up, make you late for work (when I was working) or leave you if you have a doctor's appointment that is running late!

Mobility as the paratransit of Maryland is called has turned into the worst nightmare you could imagine. I rarely use them, and as a result, my mother often plays taxi right now.

Now, we all know what it feels like not to be able to do something that almost everyone in your entire circle of family and friends can do. It gets harder for me to watch even my younger friends get their licenses and drive into independence every year. Every time someone gets a permit, even, I relive the day I was told that I could not drive, even with adaptive equipment. That gets hard to deal with, as you can imagine.

When I start feeling at my worst about it, I try to think of all the good things I can do that most can't. One thing I have over my friends that ride the bus is that I can get on for free. And I can definitely take that.

See, the Mobility transportation program, in addition their Taxi Access II program, act like good deals, but in this day and age? Not really. The Taxi Access program, as a matter of fact, changed it's policy, and now costs MORE than it used to.

This forces me to deal with waiting for parents or friends to be available to take me to places that I can't get to by walking. And it's crazy. Why should those of us without transportation be treated like this? We're human beings, too. And I am not the only person to complain about this particular issue, but I am still searching for a solution to the problem.

Saturday, March 24, 2012

Sitting for The Sake of a Fandom

Blog's going to be a bit short tonight. I'm a little under the weather. However, I need to write every day, because it just feels wrong when I don't. Now that the medicine has kicked in I can focus a it more.

Today, I ventured outside the house into the cold, rainy weather to see The Hunger Games, a movie I have been waiting for for months. When I woke up this morning I was feeling two different emotions. One was excitment because I realized the today was the day I was going to see The Hunger Games. The second was an extreme dislike for the rain, and cold, and my hips.

Yet, I ventured out anyway. The tickets had already been purchased, and today promised to be the best time, ever. Well, things were good, until the actual movie. Seating in the movie theatre is not condusive to what Emily has been trying to get me sitting ergonomically.

Of course, not every single place is going to be adaptive to those kinds of needs. But those of us who are dealing with problems stemming from tingling in the back of our legs beause we're too short to reach the floor find it very uncomfortable. Couple that with the fact that two days laster, I am still dealing with the EMG testng I'd gone through on Thursday, what should have been the best movie experience in months , was pure torture. I had temporary relief when Mom re-arranged Fred's backpack and coat so that my legs were not touching the edge of the seat. (Fred's my BFF).

Thankfully, I was able to distract myself through the movie. But after movie, I paid for that time sitting. My hips were sore, my right calf and ankle were in excrutiating pain. See, thinngs just like that are what make going out impossible for me. and I don't want to go out much anymore. Period.

I would definitely do it again, of course. This was one of the best movie adaptations I have seen in ages! I am so proud of everyone involved. My author blog over at www.victoriadurm.net will have a full review later today, for anyone who might be interested.

Friday, March 23, 2012

The Good, The Bad, The OMG that Freaking HURT!

At some point during your rehabilitation, or daily, you will deal with a rang of emotions and physical discomfort. These different types of conditions really go hand in hand. No one knows how that feels better than I do, especially after yesterday's fiasco.

Yesterday, I had a whole day out, and about. In the morning, I had my second meeting of the week with Emily, my Physical Therapist so I was up pretty early to begin with, after being up till 2ish? I'm not quite sure. All I know is that I was just a bit depressed, and exhausted when Mom and I finally got home.

I wasn't home long enough. I was dragged out again, and into the city to see my Neurologist. I was slated to get a Nerve Conductivity test done. What was supposed to be an hour wait turned into 2 almost 3 hours before Mom and I were called back , and then ANOTHER hour of being poked, prodded and haaving electric shocks sent through my body.

At least when I got home, and today, I have been allowed to rest, and got to soak in a Calgon soaked bath. Cerebral Palsy treatment isn't always fun, and it can downright suck when you're tired, and have no energy. But sometimes, it's little things like being able to go up and down the stairs in less pain, or getting in and out of the bathtub with no assistance can all make it worthwhile.

Thursday, March 22, 2012

My Support Team: Part 2

Yesterday, I talked about family being a big part of your support team. They are especially important when you are dealing with so many others that aren't your family. In my case, I have 3, soon to be 4 doctors that are handling my condition.

The first is my primary care doctor. Dr. Rhanama has been amazing. He is very compassionate, and understanding. It helps that his office is almost like family to my family. We all see him. He is the one who first diagnosed my Anxiety disorder, and we have been treating it ever since.

The second is my Neurologist, whom we'll just call Dr. S. He's' amazing, and funny. I can't say the same for his scheduling team or office, but it's him I come to see, an I don't worry about it too much, as long as I have my Nook Tablet with me.

Third and finally right now is my therapist, Emily. Emily is great, and a positive influence for me. I have a lot of fun, talking to her, and doing my therapy session. Don't get me wrong. She does push me a bit more than I'd like sometimes. But she is open to what I have to say about my own progress, and reminds me to take it a day at a time.

These are just a few people I have in my corner. I do get quite a bit of support, and they have made all the difference in what I have been dealing with.

Wednesday, March 21, 2012

Places to Go, People to See: My Support Teaam

As anyone who has multiple conditons knows, your condition can only get better if you have the right people working with you. I have found my support team, and they are helping to pave my way to independence once more.

The team starts at home. At home, I have my brother, my stepfather, and my mom. I call my stepfather Daddy, so that is who I mean when I sad Daddy (Just saying that now)

Mom has been a part of my support team since my birth. She is the taxi, the person I go to when I need to cry, and the reason I keep trying. This woman is nothing short of an angel sent from God. There are some days I think I would have given up at this point if she didn't exist.

If Mom is my angel, Daddy is hers. I met Daddy back when the Lord of the Rings films were being made. Both of us were a part of a club called The District of Dark Whispers which was based in DC. We hit off pretty well, and we became best friends.

Eventually, I introduced him to my mother. It wasn't love at first sight, trust me. Mom believed that Cal (as that is his real name) was spoiling me. Cal thought mom was a bit of a female dog, for a nicer term. However, that woul soon change.

One day, Mom finally had a day off w ork from Hollywood Video, and was a ble to go out with us. Cal took us to Arundel Mills mall. Before I knew it, the two of them were sennding me off to FYE,and sharing stories at Chevy's.

A year later (almost to the date), Mom and Cal were married, and my youngest brother and I were moved to Baltimore, Maryland. Since then, he has been the best thing to come into our lives. He offers support to Mom, and he's still great at motivating me. He is the reason push myself to go out more often.

Daniel is now 17, but before he was old enough to completely get it, he was helping me. Being the youngest, he missed a lot of the things I went through in my early life, but he knows enough to know that I don't play around when it comes to my disability. My brother and I share a connection that I will never really understand. Do we fight? Yes. But as he's getting older, that's less and less of an occurence.

He helps me when I'm having a terrible day of pain, and he's there when I'm stressed, on most days. I consider it family karma, since I took care of him as a baby. I'm not sure how he feels about me, but I know that I love him with all my heart, and I want him to know that I will never ever forget what he's done for me.

Family is a great start to a support team. They are the ones who wil more than likely take care of you when you're going through tough times. But they are not a substitute for doctors. Tomorrow, I will talk about the team I have emassed in just a few short months. See you then!!

Tuesday, March 20, 2012

Lets Get Physical (Therapy)

Today was my 4th day of Physical Therapy. When I woke up this morning, I was feeling pretty bad. My sinuses hurt, and I was exhausted. Mom asked me if I wanted to cancel my appointment. I laid down for a few minutes. "No,no... I can't do that."

By the time I get to therapy I am in so much pain that I really don't want to deal with it, but I pushed through it. Rome wasn't built in a day, as they say. So I push on. Emily has me do some stretching exercises to really push the muscles. And I was feeling better after all of those. My sinuses weren't even bothering me.

Physical Therapy is an important prt of my rehabilitation. It, and a few others are only a few things I have to do, even if I don't want to. Therapy and your therapist are integral to the treatment of most symptoms brought about Cerebral Palsy. I have come to respect the advice of Emily, my therapist. We are comitted to bringing my independence level back up.

So my advice to others who are struggling to get through their home programs or physical therapy, please remember this: Conditions are only made worse by doing nothing. And I am not one of those to let anything stand in my way.

Monday, March 19, 2012

The Bigger Picture

So far we've talked about physical pain. Let's talk about the mental effects that sometimes accompanies conditions such as Cerebral Palsy. Mental ailments are commonly associated with these conditions because of the fact that often, we feel alone.

However, a lot of have things like depression and anxiety disorders are hard wired into us. In my case, I was diagnosed with depression and anxiety disorder.For these, I am medicated. Sometimes, it doesn't work. Most of the time, it does. Anxiety disorder itself varies. For me, it is evident when I start picking sores both new and old.

The trick with this and other mental conditions is to find a way to cope. Medicine can only do so much. It is up to us to do the rest. Here is what I do:

1. My first go to is to make sure I have taken my medicine. One missed dose can really mess me up.

2. If it's noise bothering me (such as a crowded café or mall), ear buds do the trick. I never ever leave home without them. Some people are worried about their cellphones. I worry about not having my Skull Candies.

3. Distraction is my favorite. This works best for when I am trying to tune myself out of my surroundings, or trying to keep negative thought from infiltrating my otherwise positive thought process.

So those are my coping mechanisms in a nutshell. What about you guys? Feel free to leave me your tips and tricks!

Sunday, March 18, 2012

When You Don't Feel Like Doing Anything

Hey guys'. Ever had one of those days where doing anything just feels like the worst idea? I'm with you guys there! When you are dealing with physical pain its hard to get yourself to get out of bed, let alone do chores and go out of the house. Lately, that has been me. I am sleeping terribly late unless I have Physical Therapy. That is the only time I really get up and stay up.

I can attribute part of that to my medications, though most of it is me just not having energy. But I have decided that I am done making excuses. Yestday, I pushed myself to go out and I am glad I did. I saw some old friends that I hadn't seen since last Summer.

Staying inside doesn't really let anyone do anything. But staying inside has more like the viable option when I am not really up to par. My life is in mybroom most of the time since I barely get out with anyone. Most of my friends are either aft work, school,or married with children. So I really am at a disadvantage there. My particular limitations never allowed me to be able to drive. I have Mobility through the Maryland MTA , but they are still a few kinks in the system, and they are unreliable.(but that is for another post)

However, I don't really mean to get on a tangent about transportation. The point is that we can find ways to motivate ourselves! One of my incentives is to be able to watch Judge Mathis if I do my exercises first thing in the morning. And believe it or not? Mathis really does motivate me.

What about you guys? Do you have good ways that motivate you to do things you really don't want to do? Check in and let me know what you are doing. Tell me your thoughts.

Saturday, March 17, 2012

Finding the Inspiration to Fight

When are fighting to gain independence after losing it, sometimes, it can feel like you are alone. The thing to remember is that you aren't. When I am feeling alone, there is no better cure for me than to get out.

However, I have to depend on transportation. So I have to rely completely on my ever present positive attitude. People believe me when I say that it has been a real struggle to keep that trademark outlook of mine. A few people have helped me accomplished this. And they are going to be honored here today in this post. But this is an entry that I want everyone to feel free to leave the names of things that inspire you.

First and foremost, I am inspired by my mother. She has to be the strongest person I know personally. She almost died twice giving birth to me. And while she has had a few shining moments, most of here life, she suffered different types of abuse and hardships. Yet, she has a confident, determined woman. She is the sole reason I am alive today. I strive to be as much like her as I can.

My Inspiration goes way beyond family, though. I have a select few friends that have also inspired me. The first of these is Lexi. She and I meet when I was looking for a new coping mechanism. What started as a major Rp partner became my best friend. See, Lexi is a high functioning autistic. When I first meet her she was just starting to cope with her diagnosis. It was hard because of course no one could tell she had it.

Eventually, she got it together enough for me to come visit and move in with her. I was there for two years. Within those two years , I watched a young woman struggle to come to terms, but not succumb to it. And she did. Lexi learned her triggers and how to tell others when she felt a meltdown. I am so inspired by her that I finally decided to go and see my neurologist.

Another tremendous young lady named Aubrie Cox has been inspiring me for years. Aubrie has both Fibromyalgia and EDS. Despite that, she has made it through four years of undergraduate school, receiving her B.A. in Literature and Writing. Now she is making her way through grad school, and the haiku community with her blog,Yay Words! She has not once let her conditions let her down. I want to be more like her, and pretend my condition doesn't effect me.

Heather Beck is another friends who has had her share of pain.I mean that literally. She suffers from Lupus,a disease without a cure. She also had bipolar disorder, which can be very hard to deal with sometimes if you don't have the right meds or care. Socially speaking, I know it gets hard for her, but she fights through it. For all her trouble, she tries her best to remain positive.

These are just a few people that have helped and continue to do so. Just remembering what they have accomplished helps me remain optimistic. And so for that, they will all forever be in my debt.

Friday, March 16, 2012

Independence is Keys

Independence has always been key for me. From a very early age,my mother stressed how important it was to be independent. She wanted me to live as independently as I could. when I was little being independent was not always easy. However, I was also stubborn.

At the age of seven, I underwent hip repair to fix the way my legs were turning in. That operation left me in a body cast for six weeks. Just like every other seven-year-old, I hated being immobile and unable to do anything. So, I found ways to cope with it. c
Today, I am the exact same way. When I found out my Cerebral Palsy was getting worse, I was devestated. But only for a little while. I have never been one to settle on something I wasn't happy with. I sought the help of a new neurologist, and have gone back to physical therapy. This is only my first week, and it has been really brutal.

I won't lie and say that I don't cry when things get hard. But tears are shed for more than one reason, too. When I was finally able to cross a street by myself a few Weeks ago, that was a small victory towards independence. And when I can lift my leg a little higher each therapy session that is another. So, I try to focus on small victories, instead of all the things I have been forced to quit doing.

How do you deal with new, limitations? Do you just give in, or fight to regain your independence?



Thursday, March 15, 2012

Introduction Part 2

From the time I was able to walk, Mom knew that something wasn't right. Even though I was walking, my legs were knocking together, in other words, my legs were turning inward. This caused me to be unstable in my movement.

Mom enrolled me into early preschool at Brockman Elementary School for the Disabled. That is where I began to develop my early social life, along with confidence in walking. I met teachers and Physical Therapists that would follow me for the remainder of my elementary school career.

Two of the most important people in my therapy were Ms. Susan and Ms. Barbara Wahl. The two of them were instrumental in my early muscular development. Brockman was also where I learned how to read a little bit.

Brockman provided Mom a support group, too. She became and advocate for disabled families on Fort Jackson, which didn't have a program like that. With help from Brockman, Mom founded a program called ACS with Mrs. Cheryl Jackson. She also founded the first Girl Scout troop for disabled girls. It was a lot of fun. The crafts we did were designed to help us with our various degrees of occupational therapy.

I stayed with Brockman until I was four. I was transferred to another type of school. This school was known as Easter Seals. What Mom and I didn't know was that this is where my true independence would begin.

And here, I will stop with the history. From here on, I will be sharing my current experiences. I hope you will continue to join me for this journey.

Wednesday, March 14, 2012

Introduction Part 1

Hello. You have reached the blog of Heather Kantz. I am a 31 year old woman with Spastic Cerebral Palsy, and I am here to share my experiences dealing with my disability as I am getting older.

First let me make it clear that from this point on that cerebral palsy, no matter what form you are going through, is not going to be referred to as a Disability. It will be known as a "difability". I came up with this word today, because I was feeling a little down about myself, and the recent developments in regards to my mobility, and independence. There are a few factors that have also contributed to my current state.

When I was born, I was born three months early. My mom was really sick, and my father was absent. At birth, I weighed less than 2lbs, and was diagnosed with Hydrocephalus. I was the first baby to have a VP shunt put into my head to save my life.

However, the complications didn't stop there. They discovered that my tiny heart had small holes them. They had to give me open heart surgery before I was even a year old. I spent the first year of my life in a hospital in Denver, Colorado. Of course, my mom was by my side the whole time.

I can't imagine what my mother thought when she realized that her first born wasn't developing like a normal baby should have been. At a year and half old, the doctors diagnosed me with Spastic Cerebral palsy, and told my mother that if I lived, it wouldn't be past the age of five, and I would never walk.

Being a baby, and too young to remember, I don't know how Mom coped with this news. I remember one time she told me that she hated God for doing this to her. For giving her a child to take care of that was going to need care for the rest of her life. And I promise you, this is a woman, for as long as I've known her, has been a strong Christian woman, so hearing that part made me really think, you know?

My mother went about taking care of me, oxygen tank, seizures and all. For the most part, I was a normal baby. I didn't like having my diaper changed, I didn't like the oxygen. (I used to pull it off!) . But she says I was a happy baby, and rarely into trouble for doing anything normal babies do.

I guess around the time before I turned 2, Mom started taking me to special therapists that worked with children that had various neuromuscular disorders. This included orthopedics. I had one therapist that stood out. I don't remember his name, but I remember, vaguely, what he did for me. You see, I was so small that a lot of the walkers they wanted me to use were too light. So he went home, and built a stroller for me to use out of wood, and I would push my Kermit the Frog in it. Easter Sunday, 1983 at the age of 2 years old, I walked to my mother for the first time.

To Be Continued.....