Archive for January, 2010


January 29, 2010

I wanted to maybe explain why I am so hyped on independence.

I have a feeling that most of my readers are young parents and I don’t want to discourage you that is not my intent for this blog.  I want to encourage you, I know that there are many levels of SB, I happen to be on the higher end of having Level L-4-5 also shunted. I feel as we grow up its up to the parents to help us become independent.  Some of us will not be able to do something that someone else might be able to do.  I have a friend who also has SB and for instance she is not able to do stuff that I am able to do. I feel that its all because of the way she was brought up. I was brought up to try everything and it might take me twice as long to do something but that is just away of life. Her parents would see her struggle and do it for her, so needless to say she is now living in a home for disabled people to have someone take care of her. Do I think if her parents had allowed her to try and do stuff her self could she live on her own? Oh yes.

I am struggling with things to write about because I just have lived with SB and never thought about it before, but when my boyfriend asked me to try blogging to help others I said I would give it a try.

I hope that what I am writing about is some what of a help to those out there. I want to reach you all where you are. I want to reach also extended family members even if you have other children that are older and need someone to talk to and ask question to I am here.

I may not get back to you during the week. I recently started a parttime job and that is taking all energy out of me during the week. I am going to work on blogging on the weekends.

If you are in the part of the states that is experiencing bad weather this weekend please stay safe.


Where have I been?

January 26, 2010

Dear Readers

I am so sorry that I have been away from blogging/writing this last week. There really is no excuse.  I have started a part time job as a receptionist and that has pretty much taken most of my free time.  I am going to try and do much better at getting on here and atleast answering your questions in short little blogs.

Someone asked me about my braces? I use what they call KAFO’s.  I never knew the actual term until I was a bit older I just knew that they came up to my thighs. I used to use when I was little HKAFO’s. But since I have hip action as they called it, I am able to use the KAFO’s.

Please keep the questions coming and I will like I said answer them in shorter blogs and try and do that every other day if not daily.

Thanks for taking the time to check out my blog. I love being able to help those of you that have little ones just starting out.

Oh and if they start to pull up on things..yes that means they want to get up right and you need to check into bracing if they need it.  Yes braces are cumbersome but its a great way for your child to be independent,  yes they may be uncomfortable in the beginning but if you work with your child little by little they will be able to wear them all day. I put mine on at 730 am and I am not out of them til 11pm at night when i got to bed. Great way to be independent if your child is able to walk. I know there will be cases were kids can’t walk and the wheelchair is the only way to help them be independent and that is ok too. Just making sure you child can be as independent as possible is the key.

Great Questions

January 19, 2010

I  wanted to again thank  you all for reading and posting questions and comments to my blog.  I am so excited to be able to encourage you.  I want any of you to feel free to post my blog to your websites.

A couple of the big questions that everyone is asking is do I have bladder and bowel issues? I have to say that God has blessed me with bladder and bowel control. I have heard that with my level L-4-5  that this is very uncommon.  That is why I say its a blessing from God that I do not have those problems.  With saying all that I am not going to say that I don’t have an occasional problem, yes I do. But you know I have just learned to adapt and when I do have problems, don’t let them get to me. I have had great parents who don’t make a big deal about it, plus my boyfriend does not make a big deal about either. I mentioned this in a previous post.

Also some of you wanted to know if I was shunted? The answer is YES I am. I had my first shunt placed when I was 7 days old. From what I was told I had it for 6 months then had a malfunction but no surgery was needed to fix it.  I had my first shunt revision at the age of 18 years old. Before that I was monitored and was told that I no longer needed the shunt. But like I mentioned at the age of 18 I fell and bumped my head can’t actually remember what happen, I just rememeber 24 hours later I had a terrible headache and started throwing up. We had been in touch with the doctor and they wanted to see me…so off to the neuro we go. Come to find out that fall triggered something with the shunt, so I had to have it revised. I had about close to 1.5 of shunt revisions every 6 was a tough time, especially since I was a senior in HS. I also at one point spent 2.5 weeks in the hospital with a shunt infection.

How has the shunt effected me? Well I have a mild learning disability. I do have problems with auditory input. I have learned over the years how to adapt. This is just something you as parents will have to help your child, figure out how to adapt to their daily lives..I make lots of lists to get me through my day.  My friends know that I can’t remember alot of things more then maybe 3 items at a time, if they are going to give me a list of things to do. I just make sure I have a piece of paper to write things down.

Well that should keep some of you busy reading for now. Please keep the ideas of things that you want to know. I want to make this a place that I can help parents.  Feel free to post my blog to your blog.

Thank you

January 17, 2010

I wanted to first thank all my new followers (guess that is what you call you all)? I was and still am in shock of all the hits I had this morning and last night.

I want to be an encouragement to each and everyone one of you.  Some have asked me to talk about my struggles of what its like to live with SB.

Let me give you quick background. I was born with the most severe form at L4-5. I walk with braces and crutches. I don’t have bladder or bowel issues. Have always been able to go the bathroom on my own. Yeah I go more then the average person but its just a way of life and my parents and I just have learned to live with it. My boyfriend also has learned that as he says “its just the way I am wired”.

Is having SB a struggle oh yes its a struggle but I was brought up in a home that allowed me to try anything that I wanted too.  I learned  how to drive a car at the age of 19 out of necessity  to get me back and forth to work. I graduated from high school at the age of 18,  I was in classes for people with LD issues, back when you were in a classroom with all students from the ones who did not care about school to those like me with LD issues. It was a struggle but I did really well, I could have done well in the regular classroom if I had support like they do now a days.

I love sports so I tired several sports for winter I learned how to snow ski, in the summer I was involved in a disabled rowing/sculling team.

I did not have many friends through my life but there are a few that have stuck by me.  I recently at the age of 39 have my first boyfriend.  He is so awesome.  Some people think its weird to search for your spouse over the internet but I have to say it was the best thing that happen to me.  No he is not my spouse “yet” but we are taking it slow. We were matched 3.5 yrs ago. Met in person for the first time in October 2009. We instantly clicked, we get along so well. What Email and IM allowed us to do is to get to know each other on a deeper level before actually meeting face to you probably are wondering why I mentioned this? Its because this is a struggle that I have had all my adult life. Guys were just not that interested in me. When my boyfriend and I finally did meet we spend the entire day together he came to NC to visit me. He saw the struggles that I deal with all day long. I struggled at times with steps and he felt helpless..his words. He did not know what to do. I told him in the beginning that my life is full of struggles and that I adapt. I also told him that if I need help I will not be afraid to ask for it.

This is where I think most parents of older children need to allow your kids to explore and try and do things for themselves..yes it will be tough to watch them struggle but you need to allow them to struggle so that when you are not around, they will be able to figure out how to do stuff.

I am not sure I answered any ones questions today. I have to really start to think about how I do things and get those down on paper.  So that I can share the struggles and accomplishments with everyone. Please feel free to comment and ask questions I want to make this as open and positive as possible..I was talking to my boyfriend and tell him about what I wanted to accomplish here and he is so excited for me.

Blessings everyone have a great week

Sorry for no Posts

January 13, 2010

My dear readers,

I am sorry that there has not been any post in the last few days. I have been so busy with volunteering different places this week and today I just got a part time job working as a receptionist.  I plan to write more this weekend. I am sorry for those of you that have been checking my site.

Hope everyone is having a great week. I will be happy to see Saturday..

Have a great rest of your week. The weather down here in NC has finally started to warm up.

Thanks again for reading my blog. Praying for you all to have a healthy week

Why use crutches?

January 8, 2010

Why use crutches?  Good question huh?  Well for me the reason I use them is for independence.  Since I was born as you know with a disability, I am not able to walk without them, so they make me independent. If i did not use them I would be in a wheelchair. So thanks to great parents and therapist I learned how to walk with crutches at the age of 18 months. Was it hard work yes it was. Do I remember the beginning not really. I started on what they call underarm or axillary crutches. I used those type until I was around the age of 11.  Then learned how to use what are called forearm crutches and continue to use those to this day. There are a few places out there that you can find that you can get custom made crutches if you are done growing and want something that looks little more grownup. I won’t give you any names or places to go in this post just know that they are out there and you can google and find them. I have a great pair that is custom fit for me and have been using them for over 10 years. They are light weight and made of titanium.

There are other reasons people use crutches, because of injuries, maybe you had surgery?

There are proper ways to use them I will discuss that briefly here today, the best way for you to learn how to use them is to contact a physical therapist or someone who is trained in teaching people how to use crutches.

One of the first things is to make sure the crutches have a perfect fit for you. If they don’t then it will be very difficult to get around and even could cause more injury or damage then actually helping you.

Some other additional things that you need to be aware of are with the underarm crutches the crutch should come with in 2-3  fingers of your armpit, make sure you are not leaning on them cause that will cause more damage to your nerves in your arms and you will then have more problems then just a leg/foot injury. You should be able to extend your arm down and your elbow should  be able to rest at about a 30 degree angle.

For the forearm crutches you should be able to flex your elbow between 15 and 30 degrees and the crutch tip should come within 6 inches of your foot. crutch cuff should come with in approximately 2.5-4 cm below your elbow.

There that should get you started. I want to in future post talk about how to walk with crutches. Also make sure you get a good pair of crutch tips that is very important because the wrong tips can and do cause problems, cause you to fall, slip and not feel confident in walking. As we know confidence is what is important for those of us that walk with crutches, cause there is plenty of things that can cause us to fall. I will talk about that in future post also…stay tuned for more ways to be independent.

Wheelchairs..are not just for getting around

January 8, 2010

Types of Wheelchairs:

When you think of wheelchairs your first impression is probably hospitals and institutions right? That would be mine but wheelchairs have come along way over the years.  There are so many different varieties of chairs out there, manual chairs, electric chairs, scooters. What I am not going to do is tell you which one is better from the other. I just want to inform people that there are so many ways of those of us that are disabled to be more active and not have to sit at home.

The first one that I am going to talk about is a manual wheelchair or what might be referred to as a self propelled chair and the reason that is because you have to manual push the chair yourself by using hand rails that are attached to the wheels of the chair, this chair is good for someone that has good upper body strength and can push themselves. Over the years the chairs have been made from  lighter weight materials those in turn help those of us that have upper body strength to be more active.

Then there is what I call the electric chair, a bit if history that I was not aware of until researching this article is that the electric chair or power chair was developed for men coming home from World War 2 because of injuries that occurred  they would require a powered chair, the chair is controlled by a joy stick device attached  on the armrest.

I think I am going to leave you all with those two options for wheelchairs for now. I have come up with some other topics to futher our discussion on mobility and would like to start researching that here in the next day or so. Want to look into different kinds of crutches, braces, maybe even walkers. I hope that you all have enjoyed this post and I look forward to posting more in the near future.

Hello world welcome to mine

January 8, 2010

The purpose of this blog is to give you a glimpes into the life of a woman with Spina Bifida. I want this to be a place that people come to see what challenges I have. I also want to be able to encourage others that its not all bad to have a disability. I will also be posting on travel things from a disabled persons perspective