Wednesday, June 6, 2012

Been awhile... so here is an update

Yeah, sorry that I haven't posted in a while, that thing called life has gotten me really busy... along with a conference I went to for MS in San Diego... (CMSC) ... but I got to meet Clay Walker, which was amazing. 

So what's up with me... I'm just aggravated, to be completely honest with you. I try and be this upbeat person and a MS Advocate... I love sharing my knowledge with others and learning more and helping others with their MS.. but at this very moment... I'm pissed off at MS. 

So let's see... I got put on meds for migraines... basically I would go outside and the heat caused this huge unbearable migraine for me... to where I couldn't eat or sleep or anything. So I got meds for that... but it's still freaking hot! 

My spasticity is like 10 times worse than it normally is because of the heat... and I can't even seem to be outside. It sucks, cause I love being outdoors and doing things outside with the kids and stuff and my MS Spasticity is putting a really big stop on that. 

I feel like a vampire. I won't go anywhere, unless it's at night. Like today... I needed to run errands, but I decided not to even try until there is NO sunlight outside. Which is also a problem, cause I have issues with driving in the dark. So it's like a lose/lose situation. 

I was talking to my mom  yesterday on the phone and I kinda broke down a little bit, because I just can't handle the pain... I try and put on a smile and be there for my kids and do what I can... but as of right now, I'm lazy and I can't do anything. Even though it's cool inside the house, it's still hard for me to move around because my body knows the temp outside. 

I'm also looking for a new car, because for one my car is old... and isn't gonna last much longer... for two it has leather seats... for three... every time I stop, the AC stops blowing cold air. So I've been trying to search online for new cars... but I can't go looking unless my husband is here to take me because my hands will not let me drive during the day. 

I just feel like I'm going to go through this every freaking year living here in Texas. It's depressing, it's painful and it just all around sucks. So that's why I haven't been so active lately. I did however LOVE being in San Diego.. where the high was like 66.... yeah, was amazing. 

I have to go get my Tysabri tomorrow... and I'm gonna try and talk to my neuro while I'm there, because I just can't handle the pain anymore. I'm on Baclofen and Clonozepam for Spasticity... I can't even take hot showers... note, my showers are consisting of a shower chair with a hand held shower head, but that's getting hard to hold to bath myself. 

Sorry this is such a downer post, but I just wanted to let everyone know too that yeah, I try and have the most positive attitude while fighting MS, but sometimes it just pisses me off and makes me not able to do anything. Kinda like the MS is winning right now... The bad part is... it's not even our HOT MONTHS yet... seriously?!

I really need a get a way to see my best friend in Idaho... I just think the both of us NEED each other right now, and not just on the phone. 

A lot of people ask me if I use cooling products... yes, I do use cooling products... still have spasticity... what do you know. The heat also drains me... like I've wanted to sleep all day long and I have fought it... ALL DAY LONG. I don't even want to go run errands tonight, but I know that I need to. 

Well, I'll check in soon... hopefully!
Take care!

1 comment:

  1. Hey hun... isn't it wierd how cool we have a/c at, our bodies react by the temp outside! Here in Wisonsin the winter temps get brutal and even tho inside it's warm I get horrid spasming.
    We can't win!
    Have you tried Gabapentin? It does help mine do a certain degree... guess I'll take what I can get :)

    Miss you girly~ Joanie Fancy Pants XOXOXOXOXXOXOXOXOXOXOXOXOXOXOXO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!