Hi guys long time no see. I would like to apologize for not writing anything on my website for quite a while. A blog post that will explain where I was and what happened, will be coming up in the near future. First I would like to tell you about something I got to do for the first time last Tuesday. I’m sure most of you will remember me talking about how I want to go live in a board and care home. In these kinds of homes I would be living with four or five other disabled people and a full-time staff. The staff at this house was very nice and accommodating. They told me I could decorate my room however I wanted. One of the nice things about this house is I would have my own room. They also said they would have no problem getting me cable TV and Wi-Fi. Having Wi-Fi is obviously something that is very important to me. It was a beautiful house.They also have a really big backyard where they said they do barbecues all the time. They told me I could even bring my furniture from home if I wanted to. It seemed like they wanted to do whatever they could to make me feel at home. Which I have to admit is a very good feeling when you are moving away from home for the first time. You all should have seen my face when I saw the roll in shower in the bathroom ha ha. A role in shower is definitely something that is on my wish list for when I find the perfect house. It is crazy what you think about when you are thinking as someone who needs disabled access. . There are some people who live there that are around my age as well so, that will be nice. Every day all of the residents either have to go to some kind of day program or some kind of job. So, it looks like I will be able to get a job and be able to make a little bit of money of my own. They also had no problem with taking me to my doctor appointments. I met one of the residents he was a very sweet older man. Everyone else was either at their job or day program. Obviously in my case I would get a job because a day program is basically just like a daycare where they do activities. I don’t know what kind of job it would be yet but my regional center worker will help me find that when I move . So this house would have seemed like the perfect place right?
Yeah that’s what I thought to, till yesterday (Friday) I got a call from my regional center worker. He told me that in order to move into this house I would have to drop one of my medical insurances so that they would only have to bill one medical insurance. if I did that I would only get 80% of my medical costs paid for and I would be responsible for paying the other 20% or I would have to go to their doctors and give up Loma Linda which is kind of stupid considering being closer to Loma Linda is one of the reasons I was going to move there. I cannot give up my doctors at Loma Linda because I have my baclofen pump. Besides that they are the only doctors that have done anything at all to better my situation. Regular doctors who don’t typically treat disabled patients throw their hands up because, they have no idea what to do with me. Well at least that is true about the doctors where I live. Another reason I cannot do that is because, my social security money will have to go to the house for cost of living expenses. So, how am I supposed to pay 20% of my medical costs if my check is going to them? I have no problem giving up my Check to live in a house. If you’re going to live somewhere where someone else is going to take care of you then, it seems only fair that that is where the money is going to go. However, the fact remains that no one can pay medical costs with money they do not have. the only money I would have is whatever little spending money I make from the job I get. Apparently the company that this house is run by is only able to bill one company because, they have a different type of funding. it doesn’t really make sense to me I tend to think that it’s just because they don’t want to go through the hassle of billing two different insurances. I had to pass on moving into that house. My regional center worker is currently looking for other places for me. I was disappointed at first because, I really liked that place. When I stopped and thought about it I realized that place was only one in a long line of other places. So it’s not exactly the end of the world. I will continue to look at places. I know that God will put me in the place I am supposed to be in.
As you can probably tell I wrote this blog over a few days. That is why it went from me being really excited, thinking I had a place to move into. Then I had to say guess what I’m not going to move there anymore. It’s okay, like I said this was only one place. I think I just got my hopes up that I had finally found a place. It’s really nice to finally be at the point where we are looking at places. It seems like it took us forever to get here. It’s weird to think that if I was moving into this house I would be moving Wednesday. I guess I’m supposed to stay home for a little longer. The way I look at it, the more houses I look at the more experience I will gain. Which, will help me get better at asking all the right questions. So, in the end I can find the right place for me. Doing something like this for the first time is definitely a learning experience. It is also very eye-opening. Thank you for reading this. I will definitely make sure to keep you all up to date. Wish me luck! 🙂
Recently I was asked a very interesting question. A friend of mine asked me what kind of qualities I would like in a caregiver. This is a very thoughtful question for someone who is not disabled to ask. If you are not someone who needs a caregiver, I’m sure that many people don’t think about how important it is for the person who needs the care to be comfortable with the person who is giving the care. I myself feel very blessed to be able to express my opinions and thoughts about my caregivers and the level of care I am given. I know there are a lot of people who can not verbally express the things they need or want. For those people I can only hope they have family members and friends that know them well enough to connect them with caregivers they would be happy with. Now that I’m planning to move this is something I have thought a lot about. I must admit I have been very spoiled in the caregiver department. For the first 32 years of my life my mom was my caregiver. I couldn’t have asked for a more perfect caregiver and mother then her. She went over and above to make me feel special and beautiful. It was always very important to her to make sure I looked nice and felt pretty. I remember how she used to let me wear perfume from a very young age saying “every girl needs some smell good”. When I was a little older she would even take the time to do my makeup. I think it is important for any caregiver to take the time to do those extra special little things that is going to make the person they are taking care of feel special. This may not be something all caregivers have time to do every day if you are taking care of someone but, I guarantee if you just find some time whenever you can it will mean everything. The things that make people feel special are different for everyone. It was always important to me to feel girly and pretty. That may not be true for everyone but I guarantee if you get to know the person you’re taking care of you will figure out what it is that makes them feel special. Now that my mom is in heaven my dad is my caregiver. No, he does not do my makeup ha ha,that is what I have friends for. Very often he will take the time to spray perfume or body spray on me, because that is something he always saw my mom do. my dad will take the time to make special foods he knows I like or, buy me little things he knows I want at the store just as a surprise. Also my friends will take the time to do my makeup, nails or hair in some special way just so I feel pretty. I think it is important for a caregiver to make the person they are taking care of feel good just by doing the little things. The things that make people feel special is different for everyone ,so even the fact that someone would take the time to figure little things like that out is something that could mean the world to someone. I’m not saying it has to be something that cost money or a lot of time. There are many every day things that a lot of disabled people can not do without help. I know that for me a lot of these things do not have to be part of my everyday care. However, there are some things that I like to have done just because it makes me feel good. I know that for me every once in a while getting to whear something I don’t wear every day, is something that makes me feel pretty and very special.
I think another important aspect of being a caregiver is to have a sense of humor. I know that at least for me and a few of my disabled friends we would not be able to get through life without laughing at ourselves. If people are too serious it just doesn’t work. There have been times when I have peed my pants from laughing too hard. There have been times when I have accidentally grabbed the boobs of the women taking care of me because, my left hand has a mind of its own LOL. Now these are both very embarrassing situations, that can become very awkward. However, I personally find it much easier to deal with if I laugh at myself. No one wants to be serious all the time. We all need to find something to laugh about right? The only way I have ever known to make situations like that less awkward is to laugh. This is just how I personally deal with things, this may not be what everyone wants. Someone who can have fun is definitely important. I believe that when you are someone who needs to be taking care of it can be awkward enough to have to have everything done for you. Finding someone who likes the job and can have fun with it is very important. Unfortunately there are some people in the caregiver business who only see the people they take care of as just a way to get a paycheck. It is important to remember that every person deserves to be treated like a person. We all need some type of personal interaction every day. If that time is spent laughing and having fun that will make it much easier on all involved. I realize that care giving is a job that needs to be done and done well. However it is also important that the caregiver and the client also have a relationship of respect for each other. I know that being a caregiver is supposed to just be a job but, I have always wondered how you take care of someone and not have some sort of good relationship with them. At the same time how do you let yourself be taking care of by someone and not develop a relationship with them? No one says that you can’t laugh and have fun with someone and still remain professional. So I think that if you have a job like this you should not be afraid to bring your personality to the job, more than likely it is going to put the person you are taking care of at ease. Having a routine with my caregivers and knowing that I can ask them to do anything I need done has always been very important. This kind of comfort level takes time but, if you have the right caregiver for you it will happen. If you are someone in my position your caregiver is someone you are asking to be a big part of your life because, you are relying on them for so many things. It is very important that the client and caregiver both feel completely safe asking questions of each other and talking about pretty much everything.
There is so much more to talk about on this subject then can be written in one blog post. So, As I think of qualities that I personally would like to have in a caregiver I will write another blog post One thing I would like to mention though is possibly the most important quality in the caregiver client relationship. Trust is the number one quality the client should be able to see in the caregiver. When you are literally depending on someone to do things that make it possible for you to be able to live your life, you have to be able to trust. You have to be able to trust that they are going to show up when they say they are and do what they say they are going to do. I mean if you are a disabled person and you can not trust the one person that literally is helping you live your life then, who can you trust? Trust, respect and admiration should go both ways in this relationship. The caregiver should expect the same kind of respect from the client as they them to give to them. It is also important to me that my caregiver see me as more than my disability. Sometimes unfortunately the people taking care of a disabled person will assume that it is okay to treat the disabled person like a child, regardless of the age or level of disability. It is true that every disabled person will have different disabilities and will need to be treated differently according to what they are used to. Regardless of the level of disability everyone deserves to be treated as a person not a person with a disability. I say this because I have encountered many people in my lifetime that think it’s okay to talk to me like I am 3 years old or, talk to me like I can not hear them. They do this because they think if I have a physical disability I must also have other types of disability as well. Any caregiver should get to know the client and the type of disability they have. In my opinion no caregiver should never make assumptions about how the client wants to be treated, before getting to know client. It is also important for the caregiver to get to know the client’s family. If for whatever reason the client is unable to tell you the caregiver how they would like to be treated the family is going to help you with that. I am blessed enough to be able to express my needs and concerns to those who take care of me. Some disabled people are not able to do this this, in that case it would be important for the caregiver to get to know the client’s family.
Every person who has a caregiver will obviously want to see different things in their caregiver. Obviously I can not speak for everyone but, these are just a few of the qualities I prefer in a caregiver. It is impossible to tell you what everyone would prefer because every person is different. This is only written in my very humble opinion. I hope there may be someone out there who is going to be a caregiver who will read this, maybe it will give them a different outlook on their clients. Thank you for taking the time to read this. I hope you all have a good and safe week ahead
Today I want to write about some big changes that are going to be happening in mine and my dad’s life this year. Before I tell you what we are going to do, keep in mind that this is something I have always wanted to do for a very long time. Something I have always wanted to do is move out of my house and be able to be more independent. I want to have a better social life, get a job or maybe, go back to school. I mean let’s face it most adults do not want to live with their parents forever ha ha. So let me tell you what I’m going to do before I tell you my reasons behind it. I’m going to go live in something called a board and care home. A board and care home is a house or as I have recently found out it can also be an apartment building where disabled people, with similar disabilities can live and get 24 hour round the clock care. If I live in a board and care home I will live with five other people who have disabilities similar to mine. If I live in a apartment building I imagine there is a possibility of a roommate as well. This is something I have wanted to do for over 10 years and I feel like I finally have my pain under control enough to do so. Not only do I want to do this in order to get my independence. I also have to be practical and think of the future. There’s something about losing a parent that makes you realize that the other one is not going to live forever. I am choosing to do this now while my dad is still healthy and can give me advice. I need to be settled in to my life before anything happens to my dad, which God willing will be many many years from now. I am very comfortable in making this decision and my dad supports me fully. This is something my mom always wanted for me as well, so I know she would be proud of me for choosing to finally follow my dreams. Even though I am sure that some people will think I’m crazy for doing this, it is really something I am doing for myself. I have a social worker to help me get into a nice place and give me advice, since this is my first time doing something like this there will be plenty of research done and visits to different places before I finally settle on the place I am going to live. This is not something I’m going into lightly. I am well aware that there are many things that need to be considered. Years ago when I started to discuss this with my parents the only thing they said was if this is where you want to go and what you want to do we will help you to do this, we will help you make it happen. So I hope that everyone can be as supportive and understanding about my decision as my parents always have been.
In addition to my decision to change my life my dad is going to do something he has always wanted to do. He is going to get a travel trailer and a truck and go traveling. I am so excited for him. I’m excited for both of us. He will be able to come pick me up so that I can go on trips with him when I choose to. We know this will be a big change for both of us but it is something that makes us very excited to think about all of the new adventures we are going to have together and separately. If I’m perfectly honest one of the reasons I am choosing to do this fairly soon is because, losing my mom has taught me that my dad is not going to live forever either. Which also means that no one who is taking care of me will. If I live in a place like this they will always have to provide me with care no matter what. I want to do this while my dad can be around for a long time to help me navigate through some of the decisions I know I’m going to have to make. I not only see this as something that will give me new opportunities but also something that is very practical in regards to my future. I do not know where I will be living yet, that is something I will be discussing with my social worker after the holidays. It will take some time to find the right place. It will also take some time for my dad and I to get everything in order and do everything we need to do . However we know we want this to happen later this year, probably sometime this summer. I know that I want to live somewhere in the city. That way there will be more to do and it will be very easy to get around on public transportation. I have grown up in a small town and loved every minute of it. With that being said I am ready to be around lots of people and activity. It is just time for me to find a place in this world and really figure out what it is that I am meant to be doing. In some ways this will be hard because, I have lived in the same town in two different houses from the time I was five years old. However I am ready for this change and more importantly I am ready to see where God will lead me next.
I know some people will have some reservations about this decision that I’m making. Honestly I have been making my own decisions medically financial and otherwise since I was about 14 years old. My parents never kept anything from me. I will not go into this without making sure I know exactly what I’m getting myself into. As I was growing up I was taught to make some very educated decisions. My parents were always there to make sure I had all the facts, as well as their guidance. However once I was old enough to understand I was allowed to make my own decisions and be as independent as possible. This will not be any different. When I think about the reservations that people have about me doing this. I am reminded of something that both of my parents always did, whenever we went to the doctors or, somewhere people didn’t know me. It is pretty common when you are physically disabled that people who don’t know you will direct their questions to the people you are with instead of you. Whenever people would direct questions to my parents and not me, they would just say I don’t know ask her she’s pretty smart. In the last few years the first thing my dad says to the doctor or any professional is this is my daughter. She is a college graduate and she’s the boss ha ha. I guess my point is that no one should worry. I know I can do this and so do my family and friends. I know I will have a great support systrem. I will be sharing this whole process with all of you. I just keep thinking someone out there might be going through something similar and maybe my experience can help them. Thank you for reading this. If you have any questions please feel free to ask. I would be more than happy to answer them honestly.
This week I could not think of anything I wanted to write about then, I was looking on my DVR to see what shows I had recorded. I noticed my favorite new show Speechless. Speechless is a new ABC half hour comedy. The show is centered around a teenage boy with cerebral palsy who is also nonverbal. JJ played by Micah Fowler. Yes I know people will ask this Micah really does have cerebral palsy although he does not have quite as severe a case as the character he plays JJ. Micah can speak and also has more use of his arms then JJ. JJ is just your typical high school student trying to fit in with everyone else. He is just trying to be a typical teenager and have a typical high school experience. JJ’s mom played by Minnie Driver reminds me so much of my mom it is not even funny. She will do whatever she has to do to get JJ whatever he needs and to make sure that he is treated just like all the other teenagers. JJ’s family has moved around many times because, his mother is not happy with some of the things that certain schools are doing. Now I didn’t move around to too many different schools but whenever I was not getting what I needed the mama bear in my mom would definitely come out she would fight for whatever I needed.When that didn’t work she would call the big guy my dad. Maya (JJs mom) is hilarious, completely outspoken and totally blunt. So much so that the schools have already heard of her by the time the family moves there. JJ’s father Jimmy played by John Ross Brownie, kind of just takes a backseat to let mom do what she needs to do for JJ. However, he is a very big support to Maya Whenever she needs him. Another main character on the show is JJ’s aid Kenneth played by Cedric Yarbrough. His role in the show is to help JJ at school and other social activities. JJ basically needs someone to talk for him. He communicates by using a word board. The way he does this is by pointing to the words by moving his head and putting a laser pointer that he has on his glasses on the word he wants to say. JJ is very smart and articulate he just need someone to be his voice. The cool thing about the show is that it is not 100% focused around JJ and his disability. The show incorporates the whole family and the challenges they face. However, even though the show has some serious moments it is not always serious at all. Within the first few minutes it usually has me laughing pretty hard. I will just say that the family is not your typical family. Each character has their own little quirks, which really adds to the show. There have only been a few episodes so I’m hoping everyone will go check it out. You can find the old episodes on ABC.com or, if you have hulu you can find it on there to.
When I first heard this show was going to come out I was interested in what people would think. A lot of times shows like this don’t do very well because, the actor or actress with a disability is not actually disabled. When that happens a lot of people feel that the disabled community is not being portrayed right. However this show is completely the opposite. I appreciate that the boy who plays JJ is actually disabled, in this case disability is portrayed very accurately. I also love that JJ is not portrayed as the perfect angel just because he has a disability. A lot of times on TV and media the person with a disability is shown as almost perfect or, having some kind of superhuman strength because of their disabilities. The show is very real showing that JJ is just a normal high school student trying to live his life day by day. He has problems and worries that any normal teenager would. He has good days and bad. He just wants to be included in activities with his friends. I don’t know about anyone else but growing up all I wanted was to be a part of everything. I didn’t want to be considered special because of my disability. The truth is that all of us are just living our life one day at a time. We all have challenges that we face every day. I also think this show is very relatable and real because, it brings in the struggle to balance disability with family. Not to mention that JJ’s mom is very overprotective. So you watch the other two kids tried to find a place between being helpful and loving to their brother, while trying not to be out shined by the every day struggles of his disability. I think when you have someone in your family who is disabled it can be very difficult to make sure the other children get all the time they need. However there are some parents out there that somehow find the balance between having a disabled child and still having time for the rest of the family. I appreciate this show because it is not only showing the comical side and making everybody laugh but it is also bringing to light many things that I’m sure most people who don’t have disabled family members may not realize. In reading many articles and reviews of this show, I read that they have employed writers on the show that have disabled children in their family. I believe that is something that is also helping them hit the nail on the head, as far as accuracy with anything disability related. I also am very impressed with the side of this show that helps the world see that disability doesn’t always have to be taken so seriously. Yes we struggle but in my family we also laugh a lot. I have always laughed at myself and all the funny things that happened to me and my body, due to having a disability. I mean if you can’t laugh at yourself for being a spaz then what can you laugh at? LOL I know some people may take a very different approach to having a disability and I respect that however I choose to think of my disability as part of me but not all of me. I choose the funny and light side most of the time.
I really think that this show is going to last a long long time. Well at least I hope it does. I don’t think there are a lot of very good family comedy shows today. I honestly believe that this is a show you could sit down and watch with your entire family. This would be a good way to explain to children what physical disability is. I think this is a way children can actually see what a disability is. It might be easier if they can relate to disability in a funny way. That way if they watch every week it won’t be scary or intimidating to them. I’m going to put some links I found on the Internet about this show at the bottom of this post. The trailer for the show and a article I read. I hope you will take the time to check them out and I hope also that you will go watch the show. Another cool thing that I just found out about this show is that one of the creators of Speechless Scott Silveri was also a writer and producer on Friends and Joey, which is probably one of the main reasons it is so funny. Well that and Minnie Driver being one of the main characters, she is so hilarious as an overprotective mom. Thank you all very much for taking the time to read this. If you have any comments or questions feel free to comment below or email bearsbabblings@Gmail.com
New Mobility article about Speechless
It is funny how when you first wake up in the morning you have random thoughts. For me most of the time it is really quiet first thing in the morning so I have a little bit of time before I get my day started to just let my mind wander. Today it is raining and cold, So, my mind touched on a few different memories. The first one happened a long time ago when I was about eight or nine. When I was in brownies, we used to go to the rollerskating rink at least once a year with all the other brownie and Girl Scout troops. Now I’m sure you’re asking yourself how did that work for me. No I didn’t have to just sit on the sidelines and watch everybody skate around, having fun without me. If you have some good people around you the phrase where there’s a will there’s a way becomes reality. I was raised to believe that just because I did some things a little differently than most people didn’t mean that I could not find a way to be involved in everything I wanted to. Going to the skating rink with my Brownie troop was no different. As some of you know I had the world’s most amazing mother. She made it her life’s work to make sure I never felt any different than anyone else and that I was treated like any other normal kid. I still to this day don’t know exactly how it happened but the first time we went to the skating rink shortly after we got there my mom told me I was going to be allowed to go around the rink in my manual chair with my friends while they where on the floor, so we would be able to have fun together and I would be able to take part in all of the games. I don’t know how it happened and whether it was my mom or Stephanie my troop leader that talked to the manager or maybe they called ahead. All I know is that is not usually something they would have allowed, but they made an exception for me that night and every year when we went back. I remember those times with my friends very well but the thing I will always remember the most, is my mom and Stephanie taking turns pushing me around the rink for hours just so I would be involved with everything. I also remember that both of them fell on their butts trying to push me a few times. hehe.
Another memory that thinking about the skating rink triggered was participating in jump rope for heart when I was in elementary school. I had to come up with a unique way to be able to participate with my friends. They were all jump roping to raise money for the American Heart Association and I did not want to be left out. I mean if I got a chance to get out of class for half of the day I might as well find a way to make it fun right? Yes of course there was the obvious idea of me holding the rope while someone else jumped and I did do that. I had fun holding the rope, at least I could participate in some way. However my friends wanted me to” jump” with them. So, one of my friends came up with a genius idea (I can’t remember who it was but I wish I could.) Someone said why don’t you just run over the rope. So we put the jump rope on the ground in a straight line. That was when I started going back and forth turning in circles over the rope from then on that became my version of jump roping. Whenever the time of year came for us to do jump rope for heart or even when we were just playing with jump ropes out at recess my friends would stand in line to put the rope on the ground for me. Even the teachers would allow me and someone else to go out on the playground early so that we could get my jump rope all set up before everyone else came out. It was pretty awesome the number of kids that wanted to be involved in helping with whatever they could. As long as it meant that I could be part of whatever they were doing. This also happened when we would do things like play kickball. One of the other kids would kick the ball and I would drive as fast as I could around the bases. No matter what we were doing someone around me always came up with a way to keep me involved. The very few times there was something that I absolutely could not participate in someone always offer to sit with me.
In my life it has always seemed to be a very common thread that a lot of people dropped whatever they are doing just to make sure that I can be involved in any activity. Over the years I also have many other smaller memories just like these. Friends bring food and party supplies to my house so that we can celebrate a birthday, anniversary or whatever other occasion might be worth celebrating. There are several people who have done things like this for me because they know that getting out has been difficult. It amazes me when people are willing to adjust their plans just to make me more comfortable. We forget sometimes in this fast paced world how unbelievably understanding and accommodating people around us are. It was nice to wake up to the memories today and to be able to share them with you all. True these things might seem insignificant to some people, but I still remember these things as if it was yesterday. Both of these things happened when I was an elementary school and I’m going to be 35 in a a few months. This just goes to show you that you never know what you are going to do that could completely change someone’s perspective on the world and the people in it. This is why every day I do my best to make at least one person smile. We truly don’t know what everyone is going through just by looking. Even if you do something as simple as smile at someone else today. That smile may be the one thing that changes their day from good to bad. Even if you do something small and kind for someone today that may be the only kind thing that they have had done for them in weeks. You never know what kind of a memory you will create for someone today that years from now they will be writing about on their blog. Also be grateful if you have those people in your life who are willing to do whatever it takes to make you smile. I know I am. 🙂
This week I want to talk about some things that happened today (Thursday) and yesterday (Wednesday). Two very small things that happened for me, but I will hopefully look back later and remember them as two milestones that helped change things for the better. First and foremost I was able to get my first steroid shot yesterday for the pain in my hip. I can honestly say that this doctor’s appointment was much different than I expected it to be, in a positive way. I would like to write about my experience for anyone who is going to get steroid shots in the future. It does not have to be as bad as everyone says it is as long as you are in the hands of caring people. I will be the first to admit that I heard some very bad things about these kind of shots. Honestly it really scared me. It just goes to show you just because someone you know has gone through something that you are going to go through, does not mean that you are going to have the same experience they did. Every experience is different for every single person. The second thing I want to talk about is getting business cards for this website today in the mail. Getting business cards was not something I had planned on doing for a long time. However because my dad supports me so much in this endeavor he thought it would be a good idea for me to get business cards now. I have to admit at first I thought he was crazy but, looking at the business cards now I’m very happy to have them. I am also very happy with the way they came out.
Yesterday for the first time ever I was able to get a steroid shot in my hip for pain. I am definitely not afraid to admit that I was not looking forward to it. Of course I was looking forward to the pain relief that I know this is probably going to bring me. However when I thought about getting a shot in my hip joint I didn’t exactly think it would be the most comfortable thing in the world. I know a few people who have had steroid shots before they told me that it was going to be very painful. I was pleasantly surprised by the time and care my doctor took to make sure he was getting the medication and the right spot. The first thing he did was start an ultrasound to look for the right spot in my hip joint to place the needle. The whole time he had two medical students working with him. I felt very comfortable because the ultrasound was on the entire time. Both the doctor and the medical students were very slow and precise with everything they did. The first thing they did was to inject numbing medication into my joint. At this point I was very surprised to find that even with just the numbing medicine some of my pain went away. To be honest the only thing I felt was the needle going in at first which didn’t really hurt at all. It was just a little bit of a pinch, it was more of an uncomfortable feeling than it was actual pain. It was definitely not the worst pain I have ever felt. I was laying back in my chair so I could not see everything that was being done. I definitely expected to feel it when they put the steroid medication in, but I did not. It didn’t seem like too long before the doctor was telling me I was done. The whole time I was laying there expecting to feel more pain. I did not expect to be done yet. I expected it to be more involved and more painful. The doctor told me that the shot will take 3 to 5 days before I feel the full effect of the pain relief. I have noticed that even after the shot yesterday I was not having as much pain as I normally would from being in my chair. The doctor said that even the numbing medicine would help with pain. So far that has been true. This morning I woke up a little bit sore but I definitely am not having the same amount of pain that I normally do. I’m very excited to see what will happen in the next few days. One major thing I have learned from yesterday is that it really depends on what kind of doctor you have. If you have a doctor who takes their time and cares about your comfort level steroid shots can be much easier than a lot of people think. The next time I see my physical medicine doctor he will make the decision as to whether I’m going to be getting another shot. I’m sure that I will if this works as well as I’m hoping but, only time will tell. The best advice I can give to anyone who is going to be getting this procedure or something like it make sure you’re comfortable with what your doctors are doing. This does not have to be the most painful thing in the world. Don’t get me wrong there will be some pain However if you feel your doctors are moving too fast or not being careful don’t be afraid to tell them. I have heard a lot of stories of people in a lot of pain because of this procedure and after my experience I think that some of this is caused by the doctors just working to fast or being in a hurry.
Sometime within the last couple of weeks my dad and I started to design the business cards for my website, this is not something I thought I would do until later in the game but, talking to my dad he thought it would be a good idea to help get the word out there. We came up with something cute and girlie. It took us a little bit to find the right place to have them made because, I wanted the card stock to be pink. Pink has been my signature color So I want it to always be a part of my website in some way. We ended up going with Vista prints to make my business cards. I got them in the mail yesterday and I am very happy with the way they came out. I wanted to document this because it is a part of this website and how it came to be. We also came up with a website motto “one perspective on a normal life with a disability”. I wanted to come up with something that didn’t always make disability the focus. I have to admit that having my own business cards makes me kind of proud. I never thought I would have my own business, website or, anything that was official enough to have a business card. I also have to admit that it was not originally my idea. It was my dad who came up with it in the first place and then he talked me into it. I decided to do it because when your dad who has had a few different successful businesses comes up with an idea you listen. Thank you dad for all the help and support. Thank you to all of you who take the time to read this and spread the word. Your support means the world to me, I hope everyone has a great week full of normal everyday moments that are really just little blessings from God.
About a year to a year and a half ago I was diagnosed with something called dystonia. Dystonia is another big word that just means my muscles are very stiff, tight and sometimes even contracted. Dystonia just like CP can effect everyone who has it in very different ways. Some people are only effected in some parts of their body but with , some people it effects their whole body. Some people have very severe cases and some people have mild cases. I have a pretty severe case. I will explain it to you the way my amazing physical medicine doctor explained it to me. Dystonia happened in my case because the damaged part of my brain causes my body to always think it is under attack. Therefore it thinks it always has to remained stiff and tight as a defense mechanism. For years we had been wondering why I was progressively getting more spastic we thought it had something to do with my physical body but as it turns out dystonia has nothing to do with the physical body it is all about the mixed up signals being sent from the brain to the body.
Before anyone has a baclofen pump put in there are a couple of things you have to do. First you have to try being on oral baclofen and have it not work. I tried three different muscle relaxer medications including oral baclofen that did not work. The reason the pump works much better for some people then pills is because with the pump the medication goes from the pump up your spine directly to the damaged part of the your brain. The medication helps the damaged part of the brain to relax. When this happens your body does not think it is always under attack, the muscles are able to relax. Having the pump requires a more concentrated dose of medication. The meds are able to get directly to the part of the brain where it needs to be. The second thing you have to do before surgery can be a possibility is undergo a baclofen trial. The trial is kind of like getting a spinal tap. Doctors inject the medication directly into your spine to make sure that you will be able to handle the medication from the pump when it is turned on. I had the procedure, then I had to lay there for six hours with the doctors and nurses checking on me to make sure that I was okay and i was not having any side effects. They also came in to move me around and stretch me so they could tell if the medication was working or not. I had amazing results with my trial and shortly after that I was approved to have the surgery.
The baclofen pump surgery was the easiest surgery I have ever had. In fact I was able to go home that day as soon as I was awake. I was awake and talking less then a hour after surgery.I did have a little bit of pain for the first couple weeks after surgery but it was easily controlled with pain medication. Honestly the hardest part for me personally was that I was not allowed to lay on my stomach for six weeks. I have an enlarged tailbone which makes it difficult for me to lay on my back so I just tried to lay on my side. I only lasted for about four days before I got tired of losing the feeling in my arm ha ha From then on I laid on my stomach propped up on pillows so as not to put direct pressure on my pump. Which the doctor was perfectly fine with. She told me I could lay any way I wanted to as long as I did not put any pressure on my pump. I was completely healed six weeks after my surgery when the pump was turned on. My pump is on the left side of my stomach. My doctor told me not to even rollover my left side for six weeks.
The baclofen pump is a pretty amazing thing actually. The medication is held in a machine that is in my stomach. The medication gradually goes up my spine, through the tube they attached to the pump that was threaded up my spine during surgery. Since surgery my dosage has been gradually increased about every month or so. It is important to gradually increase the dosage of baclofen because there are major side effects that can happen such as breathing problems, really bad headaches nausea, and vomiting ect. So far I have not had any side effects from the baclofen. During the trial I did develop a little bit of a headache but that is to be expected as a side effect of any spinal tap sort of procedure. I noticed some very positive changes since getting the pump. My hands are more loose and I have definitely gained some more fine motor skills then I had before. My left leg also seems to be more loose. My right leg however, is being a bit more stubborn which the doctor seems to think might be a combination of arthritis and atrophy. I recently went to a pain management doctor to see if there is anything they can do about the pain I’m still having in my right leg. The pain management doctor also said that the way I described my pain also, suggests a nerve problem. So I’m going to be getting Cortisone shots for that very soon. I am very encouraged by the changes I have had because of the baclofen pump. Many people have asked me if I would do it again. I tell them that I definitely would because even though it has not fixed everything, I never expected it to. Any positive change whether it be big or small is a good thing. It is really cool to watch them change the dosage of the baclofen pump every time we go it is done with a little machine that is waived over my stomach. The machine tells the doctors how much baclofen is left in my pump. From there the doctors are able to change the dosage. Every 3 to 6 months I get my pump refilled. For this the doctors do have to stick a needle in my stomach, it does not hurt anywhere as bad as some of the pain I have had to deal with. I am currently at 215 micrograms a day with my dosage. Three times a day I get 40 micrograms all at one time. This is called a bulous dose which just means that you are getting a big dose . I get these doses at 6 AM 12 PM and 4 PM the rest of the 95 micrograms I get in a trickle throughout the day this is called a basal dose I’m going to leave a short video at the bottom of this post in case anyone is interested in knowing more about the baclofen pump.
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As I was thinking about what to post this week I had a memory of being in second grade standing in front of a classroom at my school with both of my parents beside me. We were talking to the class about my disability and how it effects my life. It was the very first disability week at my school. My parents and I along with many other disabled individuals in the community and their families were asked to give a talk to every classroom. Both my mom and dad made a point to tell all the kids and teachers that even though I had a disability I was just like every other kid. They never treated me any differently than any other non disabled child. . I think a lot of the kids in my school enjoyed learning that I was just like them, it helped them to be more open to me. They saw that I was not so different after that. Of course we answered many different questions from kids of all different ages. At first I didn’t want to do it because, I didn’t know what the other kids would think of me. I was especially nervous about the kids that didn’t know me that well in the first place. would I be the weird girl in the wheelchair who came to talk to the class or would I be just another one of them. I was always the girl in the wheelchair at every school I went to, how could I not be? I totally stand out in the crowd ha ha. After disability week was over I noticed something was a lot different but, different in a good way more kids came up to me wanting to talk and learn more about me. They were more interested more comfortable with the concept of disability.
After we saw the response to disability week at my school we did many more things like that over the years. I was in brownies for three years. I had an absolutely amazing leader who always found activities I could participate in. I was never left out of anything we did as a troop. The girls that were in that troop with me are still some of my very best friends. They were always very understanding and wanted to do whatever they could to help me. Since I was the first girl in my area with a disability that wanted to be in brownies. My troop leader Stephanie decided that we all needed to learn about different disabilities. We spent weeks learning a little bit about what it would be like if we could not hear or see. During one meeting we led each other around the room with blindfolds doing different things so that we could get a better idea of what it would be like to not be able to see. We even had a student from the local high school come and talk to us, he was blind, I remember that he had such an amazing sense of humor. He told us that whenever he heard the national anthem and the part that says oh say can you see he could not help but say… no ha ha. He also taught us a little bit about how to read braille. He was an amazing person. Unfortunately he has passed away now but i will always have great memories of him and what he taught us. Another experiment we did so that we could learn a little bit about what it would be like if we could not hear was to put cotton balls in our ears and try to communicate. I can definitely tell you that that was a lot harder than I thought it would be. Then of course there was my favorite experiment where I got to bring in some of my old wheelchairs and let the girls ride around in them. There was only one rule, they could do anything they wanted but they were not allowed to get out of their chairs. Many of them said they never imagined that it would be so difficult to do a lot of things without being able to stand up. A lot of eyes were opened in those weeks, mine included. We just got a little taste of a few different disabilities I definitely think it gave us a new appreciation for people dealing with different things than we do. I think it also made us realize that we take a lot of our senses and abilities for granted. Even I didn’t realize that it would be so different having a different type of disability. Physical disability is all I have ever known so it is all I can relate to. Taking the time to step in someone else’s world even if it is only for a second is something I’m glad we did. It gave me a better sense of the world and the people around me.
Even at home mom and dad were always willing to let my friends ride around in some of my old manual wheelchairs. Of course our favorite part was the races we had down the big hill in our driveway ha ha. However I think my parents were looking at at as a way to help my friends better understand my world. Even in our late 20s and early 30s a lot of my friends still talk about those times when we were younger. As adults many of my friends tell me that they were glad to have those experiences. They all say they will never fully understand what it is like for me but, they were glad to understand just a little bit better. I always tell them that the fact that they would want to experience what my disability is like makes me feel very loved and supported. I also appreciate that now that a lot of them are parents, they are not afraid to teach their children about disability. I have also seen them teach their children that it is okay to ask questions. Disability is something to be serious about not something to be afraid of or intimidated by. Behind every disabled persons story there is a person. They may look or act differently than you but on the inside that they are more like you then you think. So don’t be afraid to ask questions or be curious about the disabled world around you.