Random Facts

Jacqui tagged me to reveal 8 random facts about me and since I don't know 8 people who read my blog to tag back, I thought I'd post on my carepage and tag carepage/caringbridge people. (I have posted it here so people who read this page can read it).

1. I love coke (the drink not the drug).

2. I am left handed.

3. I am almost a vegetarian. I eat chicken & bacon and someimes mince meat, but no other meat
4. I've never been &, probably never will be,kissed.

5. I love the TV show Full House

6. I have many nicknames- some being Kar, Kaz, wheelyfast, miss pig & mouse.

7. I can walk in all of my dreams- I'm never in a chair.

8. I don’t wear make up, mainly because I don’t think I own anything that isn’t passed it’s used by date and I can't put it on by myself.

Now, to tag 8 people:-

Shelley
Janet
Pam
Kira
Kathleen
Alexis
Olivia (if you don't have a page/blog email me your response)
Robin

Answering questions

The type of CP I have seems to vary depending on which doctor I talk to, but most seem to agree with Spastic Diplegia because both my legs and right arm are affected. I do have a lot of trouble with my hips (especially the left one) and I had surgery on them when I was 4. I do not remember exactly what they did (tendon release?) and I have no one I can ask, sorry. I am on baclofen which seems to help with the hip pain, as does walking and stretching. I think that covers everything everyone asked and if you have any more questions please ask and I'll try to be faster at answering next time.

How does CP make me feel?

This is a post I have been planning to write for a long time. I had been asked awhile ago to try and explain how having Cerebral Palsy feels and how I feel after spasms etc. it has taken me a long time to write this post because I was not exactly sure how to describe the feeling. Before I go any further, let me stress that this post is about my experiences and my feelings and it doesn’t mean that everybody with Cerebral Palsy feels the same way.

My muscles always have tension and are never completely relaxed but when they spasm it is as if they are being pulled even tighter but then they are released very quickly. It is kind of like releasing one of those wind up toy cars that little kids have. It is very painful but most of the time I am able to distract myself from the pain and it usually only lasts a few minutes.

After spasms the body part that has been spasming will ache for awhile depending upon how much that body part has been spasming. Fortunately it doesn’t hurt anywhere near as bad as the actual spasming.

Some days along with the spasms I shake a lot (especially in the hands) also. This makes even the simplest task (like drinking/eating without making a mess) and leaves me even tireder than normal. On the days when the shaking is particularly bad I find it really hard to concentrate and I often find I am nauseous as well. I have no idea if it’s all related to the shaking but it seems to happen every time I have a bad day with the shakiness so I thought I would mention it anyway.

That pretty much covers how the Cerebral Palsy makes me feel physically. The upshot of it all is I am in some degree of pain every day (I have spasm everyday) but I can usually control it with distraction and don’t use pain medication unless it is a particularly bad day.

Today has been a good and productive day. I am almost organised for the semester and have begun some work already. I have also been trying to sort out carers to take me to the v8 supercars in September but haven’t had any luck so far which is disappointing. I am in the process of writing a post answering some of the questions that you may have always wanted to ask a wheelchair user but have never had the chance to do so. If you have any questions along those lines please leave them in the guestbook and don’t be afraid of offending me or anything because I see this kind of thing as a way of educating people and helping them understand what my life is like.

Catching you all up again

Its been awhile again. I wanted to write and catch you up on the goings on in my world. I have been for several AFO appointments but I still don’t have them. The people who make the AFOS tried a different design and it just didn’t work and was not practical because I can’t wear shoes with them. After much playing around with foot angles I was able to stand straight in them though. The plan for now is for me to wear these while at physical therapy and get another one for my right foot to wear all the time. Logic tells me that for balance I will need them on both feet but I don’t know anything and am apparently not worth listening to.

I have also had an MRI and in a few weeks will have my first visit with a neurologist. The MRI went well and I was able to do it without sedation despite many people telling me I wouldn’t be able to because of the Cerebral Palsy.

Not really much else going on heath/cp wise. Same old spasms and crappiness feeling but I’ll do what I do best pick up the fragmented pieces of my life and move on. More later…

I’m me

I am a butterfly,

I am a bee,

I’m a dragon,

I’m me

I’m twisted,

I’m tortured,

I’m trapped yet I’m strong,

I’m me.

I’m a human being,

With thoughts and feelings too,

I cry & laugh just like you,

Because I am me.

Thirsty Merc concert

Last night I went to see Thirsty Merc (one of my favourite Aussie bands) in concert. The crowd were like crowds at most places and inconsiderate of the fact that I couldn't see a thing when they stand in front of me. Some even lent on me and my chair and one girl tried to sit on my lap. needless to say I wasn't going to enjoy the show much when all this was going on. To make a long story short the manager of the venue arranged for me to watch the show up on the stage so I had the best view in the whole place! It added extra excitement to the night and was a real victory in terms of disability access.

People that impact on my life

There are many people who have impacted upon my life and shaped the person who I am today. There are the usual suspects like parents, grandparents, brother, aunties, uncles, friends and teachers. But for me there are also the doctors and nurses and therapists without some of whom I wouldn’t be alive today and without the rest I wouldn’t be as capable as I am today. So it was hard for me to decide who to write this exercise on.

Eventually I decided to write about my Nana Dot (great grandmother) because she is the first person I remember who thought I was special because I’m Karen, not because I was the little girl with CP. She accepted me for who I was and who I wanted to be and didn’t try to “improve” me with therapies etc.

So dear readers, who impacted on your life?