Working Out of Your Home

You may be wondering where I've been for the last couple of months. I've been recuperating from another Carpal Tunnel release surgery. This time it was on my right wrist. It took a lot longer for this one to heal than it did for my second left wrist surgery. But I'm back, and today, I'm going to talk to you guys about the legitimate  work at home opportunities that can be found if you know how and where to search.

Before I get into that, let me explain why  I, personally, have chosen this path. Many people think that working at home is lazy. They believe that people who work at home just don't have the drive to go out there and do something worthwhile. While this might be true in some cases. In my case, the need to find home based work was more of a requirement, due to several factors.

 The first of which is my anxiety disorder. Crowds, and being rushed, and many other things just send me into terrible fits of panic. Every work environment I have ever tried has inevitably led to this happening.

The second factor is that my immune system is very sensitive. Every little thing that comes around, I am sure to get, and this is even true when I'm in the house most of the time. The fact is, I am usually 70% sick, and 30% healthy. That's how I view it, anyway.

Needless to say, I've been frustrated by the fact that I seem to be unable to hold a normal person job. I have circumstances that even accommodations can't regulate. There is no "fix" for a weak immune system caused by my cerebral palsy. It just is. This is in mind, I decided a long time ago that I wasn't go to just settle for living off the government. Even if it meant 20.00 here, and 20.00 there, I did want to make my own money somehow, someway.

So. That's what's led me to writing about this. I know that everyone's conditions are different. Some of us can , and do go on to make very decent livings for themselves. And those people are to be appreciated and respected. This entry is for the rest of  us who want some sort of supplement to the income we already get.

To begin my search, I talked to a few of my friends who I knew already worked online. They told me what keywords they used, and how to spot a scam. If you have to give money, it is not worth it. You are trying to make money, not give it away.  So here are the couple of sites that I have found that work out the best for me.

Swagbucks is a site that allows you to earn points, called, you guessed, it Swagbucks for doing things like searching using their search engine, watching videos (called Swagbucks TV), completing surveys, and playing games. It is 100% free, and if you work with them steadily, you can easily make enough points to get the minimum of $5 giftcard to be redeemed on PayPal.
While a lot of people may be lured by that alone, I like to go for the Barnes and Noble giftcards because I am an e-book addict, and I love to use them for that purpose. There are other prizes too. This site is perfect for the individual who doesn't want to spend money to buy electronics and giftcards. Let your points do the shopping for you! Trust me, it's lots of fun!

InboxDollars has been used by various members of my family for the last two or three years. Only recently did I decide to give it a try myself. I have only been using this site for two weeks, and I am set to get my first pay check in a few days!

InboxDollars, like Swagbucks, asks their customers (or workers, since we're working!) to read paid emails, take surveys, complete cash offers (most of which are completely free and don't require a credit card), watch videos. Unlike Swagbucks, you don't get paid in points. This is real income. My aunt, who used the site for a while when she was out of work, was able to pay her rent off of this site.

 It's so easy, and it can be fun, when you start inviting people to join  you! Compete to see who has the most by the end of the week, to make things more fun, and motivate you! I have one other friend that I referred to the site, and the two of us are constantly telling each other how much we've made in a certain day on the site alone. We get a great big kick out of it. In my opinion if you want actual money, this is your better bet.

There are other sites out there, but they don't pay nearly as much, nor are they as fun as these two sites. If you have a site you'd like to suggest to me in kind, I'd be glad to feature it in my next blog. For the next few blogs, I will be recording, and talking about my experiences as an online survey taker and email reader.  I hope you will give one of these two sites a try. The worst that could happen is you hate it. You have nothing to lose.

The Less Obvious Problems

What do you think of when you hear the words disability or disabled?  Did you picture someone you know in a wheelchair? Did an elderly woman with a walker come to mind? If so, you're not wrong. Most individuals who  think of disability immediately think of things that are blatantly obvious to the eyes. However, those aren't the only disabilities, and I should know. I have at least two that have nothing to do with my physical condition of Cerebral Palsy.

Cerebral Palsy in and of itself is handful to deal with. When I was a child, I had Mom, and physical therapists who helped me remember to do things for myself, such as swallowing, and walking with my heel down first.  The second, I still have issues with. Gradually, these behaviors became learned, so they weren't as obvious.

When I got to be a little older, and started going to school, the mental effects of my CP began to show themselves. I was incredibly smart in many different subjects. Indeed, I was the first to read in my Kindergarten class.

We then came to realize that I had trouble comprehending things that are just said to me. This was especially true when it came to the higher maths in upper elementary school and my later school years. Thank goodness  for the teachers Mom and I worked with. I wouldn't have made it through High school with their know how and patience!

While I know that learning disabilities occur in individuals that have no other condition, when it is coupled with CP, like in my case, it can be seem a little bit more challenging. But as I mentioned above, I did manage to make it out on top with a lot of hard work and determination.

Most recently, I have been dealing with major anxiety disorder. You would think it's not considered a disability, but in truth, it is in the dictionary as being a debilitating condition. My anxiety comes from years of physical and emotional abuse. But I also think it comes from the way people I have met throughout my life have dealt with my condition. Anxiety attacks come on suddenly, and almost  without a warning. It's easier for me to just stay home, and not want to go out. However, I've gotten a bit better at it, with the help of the psychologist and psychiatrist I'm  seeing. This is one disability I can help myself cure, or control.

The point of this post is to get people to understand that disability is more than just what is on the outside. There may be  things going on the inside that you don't know.

Guest Blogger: Aubrie Cox On Invisible Disabilities

Being an internet social butterfly, I come across a lot of different people. Some of them come and go, but many become friends for life. One such individual is Ms. Aubrie Cox. She and I have been friends for a very very long time. She's struggled through what we call invisible disabilities, and is now on track to take the blogging and haiku world by storm. But I'll let her talk to you more about that.

I'm Not Invisible, But My Illness Is

When Heather first started this blog, she made a post about the people that inspire her to keep fighting.. I was flattered to be included among those people. She made a comment though that's been nagging me: "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." First, I had to consider if I really do act like this, and then, whether or not that's a good thing. Neither was easy to do. I don't like to talk about my chronic, invisible illnesses publicly, and this is certainly the first time I've ever blogged about it.

Approximately seven years ago (I was 16 thereabouts), after a year and half of a multiplicity of doctors and tests, a rheumatologist diagnosed me with Ehlers-Danlos Syndrome and fibromyalgia. While there is no cure for either, within the last few years they've developed drugs to help people manage their fibromyalgia (none I've tried, however, have worked for me). Most doctors have never heard of EDS, or only had a brief reading on it in medical school; some doctors still don't believe fibromyalgia is real.

Ehlers-Danlos Syndrome (EDS) is a connective tissue disorder, which in the most basic sense, is caused by a genetic defect in the collagen. And if you remember anything from basic biology, collagen holds your entire body (joints, skin, organs, etc.) together. As of now, there are 10 identifiable types of EDS; the most common type, which I've been diagnosed with, is Type III (Hypermobility). The two most common characteristics are hyperelasticity of the skin (i.e. extra stretchy) and hypermobility of the joints (i.e. joints hyperextend, which may lead to frequent dislocation, depending on the severity of the disorder). In addition, I suffer from chronic joint and muscle pain and fatigue, and on-again off-again gastroparesis and acid reflux. (Wikipedia has an accurately wide range of other potential symptoms here.) When I walk, sometimes my knees will hyperextend too far backward, and when I was younger, I frequently rolled and sprained my ankles. I go through phases where my fingers and wrists lose their strength and I have difficulty gripping things like doorknobs and pencils. I bruise easily; cuts/breaks in my skin take significantly longer to heal and often scar.

Fibromyalgia's cause is not known, but can most easily be described as hypersensitivity and overactive nerves. In my particular case, the doctor who diagnosed me believes that my fibromyalgia was triggered by my lack of sleep from the EDS. The more tired I become, the more I hurt, and the more that I hurt, the more difficult it is to sleep. For me, the most noticeable symptoms aside from fatigue are joint pain/stiffness, muscle pain (more of a burning than the EDS pain), hypersensitivity to touch and sound, and brain fog. On some days every sound is painfully intensified and sharp and my skin feels bruise. My bag bumping against my leg can feel like an aluminum baseball bat, and I often can't wear certain fabrics or clothes because they itch or burn. Brain fog makes it difficult to concentrate and often will impair my language comprehension, which can be problematic professionally and personally.

EDS and fibro, among many other illnesses, are often called invisible because you can't tell just by looking at a person that they're ill. The common reaction by others is, "Funny, you don't look sick." This can lead to comments about hypochondria, weakness, and laziness—all of which I was on the receiving end of frequently in high school before and after diagnosis. Teachers were fed up with my frequent absences, and I had a classmate and friend tell me it was all in my head. These days, I'm able to manage the symptoms much better (knowing the causes, able to have a more flexible schedule with my academics and work, and knowing my limits), but that doesn't mean I don't experience or suffer from them.

As the title states, I'm not invisible: During my undergrad, I was regularly involved on campus as the editor-in-chief of the student-run literary magazine and senior editor of the student-run publishing company; at graduate school I take classes and teach two sections (25 students per section) of first year composition; I'm active in the global English-language haikai community, and in my free time I put together collaborative poetry collections on my blog. On the side, I occasionally will do a freelance editing or typesetting job. Despite the fibro and EDS, I keep active; however, this also means I have little energy left for what most would call a normal social life.

I'm naturally an introvert and a little antisocial, but I think my chronic illness has heightened this. It's easier to let people (aside from some of my closest friends) think I'm that way than to try to explain that at the end of the day I'm too tired to do anything and that I often spend the weekends recovering from the week (or the summer to recover from the semester). These days, I can be part of a conversation and others will make plans with each other without so much as asking if I'm interested. They know I don't go out; they know I'll say no. In some ways, I'm okay with that, but I won't deny it stings and often makes me feel like an outsider.

The alternative is to explain why I don't go out, and people look at me blankly and nod; it's clear they don't understand, or think that I just need to do x, y, and z and that will somehow fix me. (For example, the biggest misunderstanding most people have about chronic fatigue is that those suffering from it simply just need to sleep more.) If I emphasize it too much, then people may assume I'm too weak to do anything and not take me seriously. In high school, this resulted in several opportunities I'd worked relentlessly for were taken away from me. After, I made it a point to keep my condition under wraps as much as possible as a way to protect myself, because I felt like it was myself against the world. I was terrified to tell people during my undergraduate studies there was something wrong with me. It wasn't until the last couple months before graduation I openly spoke about it. Even then I didn't say too much other than I was struggling to get everything done which no one really paid attention to because it was the end of the semester and everyone was busy.

Because I don't advertise it, it also leaves me conflicted when I have to ask for help. I've only asked for an extension/modification on an assignment twice in which case I had to explain my illness, and both times I was worried that it would seem like I was taking advantage of or cashing in on my diagnosis because I was just then talking about it. Fortunately, neither time resulted in such assumptions (as far as I could tell). Other times when I've brought it up, others think it must not be so bad because I make it to school/work on a daily basis and still manage to do things on the side. In the end, I typically feel something along the lines of: I get my work done; I can walk, drive, and carry on a normal conversation 95% of the time; people think I'm a little odd, but that's just my personality; I know I'm far better off than a lot of people; why should I bother anyone?

It's because my condition is invisible that it's easier sometimes to pretend it doesn't exist or affect me. However, I'm not sure it's entirely healthy. I refuse to let it get me down, but that will also make me push my limits more than I should, which can lead to physical and mental crashes. I sincerely believe my chronic illnesses give me as much strength as they do weakness. The world is a competitive place, and waits for no one (especially those less genetically equipped for the daily grind), so I have to have twice as much drive to not only keep up, but overcome and succeed. Anyone who wants to succeed, chronic illness/difability or not, has to make sacrifices. For me, one of the sacrifices been being open about my chronic illness; I'm not always sure it's been the right decision. On the one hand, I'm fortunate in that I can make the choice to decide how people want to see me, but on the other, I deny myself a chance to come to terms with it personally.

I've been blessed over the last couple years to come in contact with other artists and poets who have similar conditions, and their willingness to be open about it is helping me little by little speak about it without fear or anxiety. In some ways, I may have also just needed to prove to myself that I can succeed in life before confronting my own difabilities.

This all only scratches the surface in how EDS and fibro affect me physically and mentally. I've never really found the right words (I've suppressed it for so long, it's difficult to dredge it back up), but Toni Bernhard has pretty much hit it on the nail. For more about life with invisible illness, read The Challenges of Living with Invisible Pain or Illness.Although I've read multiple blogs and articles by those with similar conditions, Bernhard best puts it how I feel, and touches on both those with invisible illness and their caregivers.

__________________

About the Author: Academic by day and haiku poet by night, Aubrie Cox is a native to the Midwest, USA. She received her B.A. in literature and writing from Millikin University in 2011, and is currently pursuing an M.A. in creative writing at Ball State University. Her micropoetry has appeared in print and online journals including Modern Haiku, Eucalypt, and A Hundred Gourds. Her first haiku collection tea's aftertaste was published by Bronze Man Books in 2011. Aubrie regularly blogs and publishes collaborative e-collections at Yay Words!

Another Graduation!

Today was my last day of Occupational Therapy. I didn't feel quite as connected with that group as I did with the PT crew, but I will miss Holly for sure! So there are a few things I  have learned through my experience with Occupational Therapy.  One of the most important things I learned was that I do not take enough breaks for the amount of time I spend on this computer. That being said, I started using a timer on my phone to keep myself on a schedule.

Secondly, I've learned that it is perfectly okay to say "I need help with this" when it comes to doing chores during a flare up. Whether the flare up is in my legs, or in my CTS, I need to learn to  say I need help. Believe it or not, that is the hardest thing for me to do. I am always very independent, and when I have to ask for help, I feel like I'm troubling someone or whatever. I'm trying to change that, slowly.

After the initial review, Danielle (my primary therapist) let me cook fried potatoes. But, they have an electric range, and I didn't know how to use any of it! It threw me off for a bit, and almost caused me a grease burn. Thankfully, that didn't happen. The potatoes turned out really well, too! I probably needed a bigger pan, but I did what I could with what I was given.

The last thing I was given was some stronger theraputty, and a certificate! I'm looking forward to having more progress as things go forward, and I am hoping you guys are keeping up with me. Come share your stories!

Transportation Part 2

So I got  a bit on my high horse about businesses and persons with disabilities who are traveling by transit last time. Today, I need to talk about something else that's even more close to home. My own personal transportation struggles. I touched on public transportation issues. Now I want to talk about my own options.

As mentioned before I was a part of the Mobility program that my state provides. They've been more unreliable than the buses around here since I started. So I haven't been using them. I've been relying on my mother and really, I don't mind. I give her rent, take her to lunch, and a whole bunch of little things to show her how much I appreciate her taking the time to drive me around.

Transportation is the main issue when it comes to my social life too. Let me explain. My social life used to be going down to the Avenue, and being the catalyst for a writing group born out of NaNoWriMo, which I have participated in for years. Every Tuesday we'd meet up, and write and socialize. But I had made friends and contacts beyond my main group. I had become a regular at Barnes and Noble, and I got a lot of special treatment for it. Now, that's not what kept going back. I genuinely enjoyed it.

But when the writing group fell apart last year, things got bad. I would still go, but I was alone, and that defeating the purpose, and my budget, in the process. I also had to depend on friends to bring me home when  mom could not because of work or her commitment to Cal, my stepfather.  In my heart, I believe that is a lot of the reason I can't get any rides anywhere, or set things up with people. The world is a different place. People have their lives, and as much as most won't admit it, we have all become a bit more selfish with our time and needs.

This makes socializing outside the computer a bit harder than anyone realizes. Everyone assumes I enjoy the time on the computer, and really, to a point, I don't make a case to contrary. But I would love to live in a world where offering gas money for transportation is enough. Unfortunately, that is not the case, and my social life is right here, online, with my friends, readers, and CityVille.

Now, I'm not saying that things are bad online. I love the Internet, I love chatting online. I just wish transportation would stop interfering with me getting into more outside social events.

Travel Options

The physically disabled have limited transportation options. Depending on the severity of the situation, limited could be putting it lightly.
I am fortunate enough to be one of the few who can get herself around for the most part.  Of course, it has taken some time before I was able to do it as I am now.

Before I got to this point, I was forced to depend on government  programs that were as far from reliable as you could get. They had caused me work related write ups, and everything else.  The options in Maryland for the diffferently abled and elder seems to be sorely lacking, and honestly, there is not a whole lot one person can do. Many would say we should be grateful for what we have, and in some aspects, they would be right, but it needs to be greatly improved.

As a whole the Maryland Transit Administration could do with a facelift in many different areas. One of those being having on time buses. Their penchant for being late or not showing up at all is not only inconvenient to those who rely on it, it can cause health issues for those who are not quite disabled enough to qualify for the above mentioned transit program.

Some of us need certain things, and need them not all the time, but regularly. For me, that is the restroom, and let me tell you something, after Wednesday's fiasco with a certain restaurant I will keep anonymous, I am even more serious about timely bus arrivals, and a more informational bus system.

I have a very weak bladder, and i also have to drink a lot of water/drinks because of a mouth drying out due to my medications, so I have to go to the bathroom regularly. There are some restaurants that do not openly offer public restrooms, and this particular restaurant, I am a regular customer when I take the bus.

When the bus was 3 hours late, I had to go to the bathroom. Now, there was no sign on the door anywhere that says "No Public Restrooms". If there had been, I wouldn't have bothered, but I did, and this guy was SO rude. Why would I bring this up? Well, I would have been fine to go to the bathroom once I got to destination. But it was late, and I had to go.

People do have bad days, and I'm guessing this must have been one of his, but geez,  was it really necessary to say, "I don't know why it's my problem, but go ahead, like it's your house"? While I'm standing there with my walker very obviously in pain? Give me a break!

It's Friday now,  and this happened on Wednesday. I'm still angry about it. It must be because I've been in Cutomer Service so much of my life, that I know better than to treat customers with disrespect. And even if that WAS the regulation, there should be some sort of tolerance for those with a very obvious disability. It's not like this guy didn't know me. He did. And he knew the walker, too, cause I had used it only two weeks before.

So while I do think the state programs such as Mobility are nice, there needs to be some vast improvements. Otherwise adults with disabilities are going to end up relying on someone else for the rest of their lives, and I don't know about the rest of you? But this is most definitely not my intention!

A Big Step in a Positive Direction

(From Saturday, June 9, 2012) 


When you're dealing with Cerebral Palsy, you often have to deal with things that most do not. Things that may not be a big deal to some are huge deals for you. One of those things for me is t he ability to cross the street, which I lost a few years ago after nearly being hit by a car when I had the right away. 

For the first time in five years, I was able to cross the street that has been plaguing me, by myself, without my friends holding my hand. I had to use the walker, but I guess that's okay. I tend to think of the walker as a smaller version of a power chair. You see those all the time with people getting across the street. The walker's just a bit more primitive. 

So I've gotten used to the fact that this is h ow i cross the street. I look forward ot a time where I learn the bus schedule. ^^ That is my next step in independence.

New Accomplishments, New Goals, and New Starts

First and foremost, I need to say: Dreams DO come true. But it's not a wish one time and it happens kind of deal. You have to work for them, and over the last two months, I have been working towards mine. What is mine, you ask? Well, you're really not supposed to tell, but I can share at least part of it with you. Balance. I have been working really hard to gain and keep my balance the way it once was. And my friends, I am regaining said balance.

I had a recently wonderful day of therapy, and I recorded it. I am excited to be sharing it with you, and hope that it will serve to remind you, even on your roughest days and trials all things are possible with a little faith. 

As for  future dreams, I have taken steps to try and start my own jewelry making business. Not try. Actually do it. Doing it online is going to work, but I need the right tools. In June, I am taking a Small Business Seminar at CCBC of Hunt Valley. (Community College of Baltimore County). I am so happy. This could be the start of something amazing.  Let us hope it all works out. 

I am here to prove that when you want something bad enough, you go through whatever trials and hardships you need to go through, and reach your goal. Today, for example, there was no way in the name of God I was in the mood to go out and do anything, but I did it, and I found information that inspired me.  So my advice and lesson for today? If you have a dream, whether big, or small, don't just sit there talking about it. Take action. The only obstacle in your way is you! If I can do it on my worst day, you can do it any time you want! 

The Proof is In Practice

There is a lot to tell you guys. The first thing is that I had my first Occupational Therapy session yesterday. I've been put on a strict typing schedule where I must take breaks. This supposedly to alleviate the symptoms of carpal tunnel syndrome. I tried it last night, and you know what?  It actually did work! Amazing, right? 

The second thing I needed to say is that I had a major therapy breakthrough with Emily! Emily has been having me work on my balance by practicing on these domes that are upside down so that they tilt. I will try and get you guys a picture tomorrow when I go into therapy. Anyway, I managed to get across them not once, but twice, barely holding on to anything. 

These two things are just the tip of the iceberg for me. Later when I got home, Mom remarked that she noticed a marked difference in my walking around the house. That means t hat whatever is going on in Therapy, it's working. 

However, that landmark at therapy was hard to take yesterday without my mom being there to witness it herself. I know it sounds crazy, but my mother has been there for me for 31 years, and we have gone through hell and back together between all our difficulties.  And it would have been nice to have her there in therapy with me just yesterday. It figures the one time I have this kind of breakthrough, she had to be at an appointment. That's life, though. She does have to take care of herself, too. She's no good to me if she's not healthy, and vice versa, if you know what I mean. 

So the next few weeks of practice and therapy, and exercise are going to be crucial. This could very well be my last four week session with Physical Therapy. And as sad as I am about it, I'm also happy. This means that I have no more need for it, and it has served it's purpose. I have made great improvements, and have adjusted my lifestyle to suit my new situation, so everything I have hoped to accomplish in therapy so far has come to fruition. Now, it's time to put things into action. 

I want to thank everyone who have continually read this blog. Even if you've never left a comment, or talked to me about it in person, it still means the world to know that I am somehow helping someone else cope. 

Heather

A Great Update

hello, friends. Its been about a week since I have posted. I have a lot of things to share. Last week, I had my Occupational Therapy evaluation. It went well, and it was very educational. I learned that the disorder of Carpal's Tunnel Sydrome doesn't start in the wrist. It starts elsewhere. Thw median nerve actually starts in the upper arm ,and that is where things start.

Today, I had my third evaluation for Physical Therapy. According to Emily, I have improved by leaps and bounds from when I started back in March. This has been the best news all week. Now I can attest to the fact that Physical Therapy can and does make a big difference.

I am looking forward to giving everyone updates when I officially start OT next week.

Healthier Living: Exercising and Physical Activity

It's important to keep up an active lifestyle when you can. I'm learning a lot about that through Physical Therapy. This is the first line of defense against stiffening muscles and joints. Exercising is a big part of staying active. However there is also a such thing as exercising too much.

The quickest way to injure yourself before you've even begun is to over stretch. Stretching too much can damage or straight your muscles. Here is one guideline that Emily has taught me: Stretch until you feel the stretch. If it starts hurting, you've gone too far.

Hurting yourself while stretching is not only damaging, it can cause a setback in setting in a routine. Without routine, sticking to your exercise program can become far too tedious, and you can lose your focus. That's why it's important to be careful.

Physical activity can mean a lot of things for different people. It depends on your personal range of movement. Depending on your capability, physical activity can be helpful. When physical activity is more common, your stiffness or spasticity will dissipate, and will tend to cause you less pain. This, too, I have learned from physical therapy.

Just like with stretching, it is important to listen to your body. When it's starts telling you its tired by way of making you feel weak or cause pain, then it is time to rest. If you've gone a few weeks without doing much, it is important to realize you need to take it slowly. (Of course, I'm the pot calling the kettle black here, because I don't always take these things into consideration! LOL)

Recognize when you have had enough physically. This will make your recovery a bit more comfortable, and quicker.

Tomorrow, we're talking about Living Healther while dealing medication side effects. Come back and check in!

Medication Complication

The last few days have been hell for me, and my syatem. Over the weekend, I missed 3 doses of my Zoloft. It was the fault of the pharmacy, mostly, but it waas all well and good. Mom and I had decided that the mdication itself hadn't been working for a while anyway.

So Tuesday, the doctor put me on Cymbalta. And Tuesday was when the withdrawl symptoms started. Not cool, considering it had me bed ridden for more days than I'd like. Very annoying, but also, very restful.

Anyway today is the first time I've been able to sit up so long. Now, I'm feeling like crap, but at least I can work on this blog in between things. I am looking forward to writing more regularly.

I hope you guys are having good time, and still working towards recovery. And rehabilitiation.

So talk to me guys. What is the worst withdrawl/adjustment you've gone throug with medication? And how did you get through it?

Another Small Acheivement!

Today, I did something I thought would be impossible for me without one of those Renew bands that are selling all over the place. I balanced on a wobbling board. That's right. I actually kept my balance for 42 seconds on a surface that tilted.

Still can't do one foot, or walk backwards without feeling awkward. But let's not focus on that! Today has inspired me to inspire you. When you're going through physical therapy, it's unrealistic to believe you will magically wake up and be able to do everything you used to do the same way you used to do it. It sometimes takes time, or adaptations before you can get your independence back.

Each of us dealing with our difabilities have to remember that they come with different challenges. Learning how to get past your individual challenges is what's important. Never ever consider the fact that someone else is progressing through therapy faster than you. Sometimes, that's how it is. We all have to adopt different behaviors to fix what's not right for us.

I don't want to say "normal". Normal is also a word that is thrown around far to often. We're normal. We're a different normal. What's normal for us may seem strange to others, and vice versa.

Okay, now that I've digressed far enough let me get back to my point. My point is that every small acheivement is only a building block of your whole overall goal. That doesn't mean you shouldn't celebrate it, though! When you reach a goal such as being able to balance or figure out how best to manuver with a cane on your own, find a small way to reward that. Although, for me? Being able to balance was good enough of a reward,

Feeling Annoyed

When medications don't work the way they're supposed to anymore, it can cause a huge problem. It's even worse when one medication works, but is causing other medications that you rely on to not work.

I was put on Zoloft for my anxiety disorder, and scratching tic. While Murphy does help with it, it's getting increasingly hard to avoid the urge to scratch. There is no logic behind it, but they consider it self-harm, and I hate it. So I've made an appointment to see my docotr, and see what we can do about it.

I'm not afraid to admit these problems. It's just getting harder to want to go out because of the scars I'm dealing with. Espeecially when the sores are open, and that there is a big problem during the warmer weather with wearing t-shirts. I wanted to try and start wearing tanks again, but not if I'm going to have all these open sores, and stuff, so I definitely want to get that cleared up.

It's important also to understand that it's not just about the scratching. When I've been going out, and dealing with crowds, I've been feeling overwhelmed, and lost. And I hate that feeling, beecause then I get confusion, and loss of memory. I know that I have dementia, and what not, but that's terrible. So I need to see if I can get the meds straightened out.

It's important, when you are talking about any kind of anxiety disorder, or depression to make sure that you check in with your doctor about the types of medications you're being put on. It is even more important when you are dealing with an entire group of doctors, so that the doctors, especially your primary, are all on the same page.

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.

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.

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!

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.

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.

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.

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.

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!!

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.

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!

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.

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.

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?

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.

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.....