Wednesday, January 28, 2009

I have to vent.

I don't want people to feel sorry for me, that is not the point of doing this. I am just at my point of frustration (yet again) and I just need to get things out.

My condition is progressive and unfortunately there is no cure for it. I have been dealing with the symptoms for going on 17 years now, all while I slowly progress and get worse.

Two of the many things that has gotten worse is my walking and my balance. I cannot walk unassisted. Well, I can, but it isn't pretty, you don't know how many times I have been asked if I am drunk because "I walk funny". My five year old nephew even told me that I need to get new legs. Now, that hurts! You ask why don't you use your cane? I would LOVE to use my cane, but my motor skills are so bad and my coordination is horrible, so I can't get the movement right.

Then, there is my balance. Ah my balance, how I miss it so. I walk from the couch in the Living Room to the Kitchen, my walking fails and so does my balance and BAM! I fall. Kitchen to the Living Room, I fall. I don't go upstairs cause I might fall down the stairs, same with going downstairs. I don't run anymore, haven't since I was 22, haven't riden a bike since I was 14 maybe all because I am afraid of falling. I don't do alot of things for fear of falling.

Which leads to today. I get up from the couch in the Living Room to the Kitchen. As soon as I got up I immediately feel back to the couch. I tried again and lost my balance and THANK GOD there was a wall to grab onto because otherwise I would have gone over the TV stand and the TV would have been wrecked. Still holding onto the wall I regained my balance and then continued walking still stumbling falling into the kitchen door finally making it into the kitchen. I think this sudden onset of balance problems has to do with a couple things. 1. I take some medications and although they help, I think they also hurt 2. Recently, I have been dizzy and very disorientated, ecspecially standing, but lying down too.

Unfortunately, I have more bad days then good days. So, I have to just sit and watch TV and play on the internets. It is hard for me to even leave the house. I don't see or talk to anyone all day except for my cats or if the UPS man comes.

So, that is my vent for today. I am sure I will have another one tomorrow or another day. Thanks for listening.

This is what I have.

I have Ataxia. At least that is what the doctors are telling me. Ataxia (although past doctors thought I had Cerbal Palsy, Multiple Sclerosis and Parkinsons Disease) is my diagnosis right now, specifically Cerebellar Ataxia or more technically SpinoCerebellar Ataxia eventhough it is really a symptom, as in something is causing it along with along the other symptoms I have.

The defininition of Ataxia is:

Ataxia is not a specific disease or a diagnosis, it is just a word used to describe certain, similar, types of symptom. Ataxia will mainly involve clumsiness and loss of coordination. Ataxia may affect the fingers and hands, the arms or legs, the body, speech or eye movements - it is a description of physical problems. Ataxia symptoms may included staggered gait (unsteady walking), problems with balance, poor limb control (co-ordination), slurred speech, choking problems, irregular eye movements and loss of reflexes.

A great resource that I have been using lately is Cerebellar Ataxia Information. There is just so much information out and that page just has everything in one place, but I admit that I am still confused about my condition and still clueless about this.

Friday, January 23, 2009

Slowly but surely.

I was talking to my friend Cassie today and she asked me if I had updated my blog at all. I admitted to her that I had not, I know bad me! But, like I have said before I don't always know what to talk about and I have been kinda sick and feeling pretty icky lately. She suggested that I use this blog as a journal for my condition. What a great idea!

I am going through alot right now and I think that writing it here will be a great way for me to vent.

I do have to admit that I am still not used to the idea of putting it all out there, I am pretty private when it comes to my condition, but I think talking about it will help, it may take time.

Sunday, January 11, 2009

It has been so long!

It has been so long since I have posted. I am sorry about that, alot of things have been going on and like I said in one of my first posts, I am not much of a blogger, but I do my best.

First, we made the Peanut Clusters. OMG! Can you we say addicting! They are really, really good, easy to make and makes ALOT. It made three tins. We gave one tin to our in-laws, to our mail man (hoping he would finally get our mail right, it did not work) and we kept one.

Christmas Eve was good, we spent it with Sven's family.

My family came down for New Years Eve. It was so good to see them, unfortunately, I was very sick and lost my voice for their entire visit, but we still had a great time! Unfortunately, I am still sick and Sven has caught it but this morning I think he looked better. Let's hope that continues!

So, the end of 2008 was good because of family, bad because we were sick, here's to a better 2009!