Scary as hell

We know that with this disease at any moment we could lose a number of things. Our ability to walk, our ability to communicate, see, hear, our scence of touch to pretty much lose anything at anytime. About 10 minutes ago I lost hearing in both ears, complete silence. It may have only lasted a minute or two but it was the scariest minute or two of my life. My son had just come in to say goodnight to me and give me a hug. I instantly thought that was the last time I was going to hear my son speak. I thought it was last time I was going to hear anything ever again. I was crying uncontrollably. Then I heard my husband ask "are you in pain?"  I could hear again.  I kept crying and my husband and understand why. This time I was crying because of the fear. If this does happen when I lose my hearing is this how it's going be? Just like that. In an instant. Silence. It scares the shit out of me.  It makes me hate this disease even more. 

This Florida Sunshine

Well the summer is here and the temperature is rising. My kids are loving the pool and playing outside. I however can not say the same for myself. The heat is literally sucking the life out of me! I get so fatigued so quickly, just a few minutes of heat and I am zapped! Trying to stay cool! Hope everyone is well! 

The twitch from hell!!

So the past two days my left eyebrow has been twitching non stop. Today my forehead on the right side decided to join in. Needless to say I am so annoyed with all of the twitching I am ready to go all "total recall" and rip my face off. I know, I know I sound very dramatic but the twitch I my eyebrow is so forceful that it is making my vision bounce up and down. And it is actually starting to hurt. It could be worse of course. But it goes to show how a tiny twitch can be a big pain in the ass. Hope all is well for everyone!!!

so busy I want to fall on my face and sleep for days!!

Hello everyone,
   I have been so busy the past couple of weeks it is crazy. I feel like I have been hit by a truck. I am averaging at least one doctors visit a day. Between physical therapy, therapy therapy, and the random womanly check up or neuro opthamologist I am utterly exhausted. To top it off I might really have a death wish, the kids were off from school Monday and Tuesday for the holidays and I had the brilliant idea to take them to IKEA. Really, what the hell was I thinking....... needless to say on Saturday 39 boxes are being delivered which means I will be in allen wrench hell for weeks.... lol. Hope all is well for everyone!! Cheryl

Down Deep

I have had a really rough couple of weeks, well maybe months. I have had this disease for over eleven years and it's only getting harder to deal with. Sometimes I feel so utterly alone in this fight that is becomes unbearable. Carrying the weight of this disease which consumes me 24/7 is exhausting, and when something little sets me off and someone tells me I am too sensitive I want to lose my shit. I usually have a pattern of six months semi normal then an attack then a bought of depression, then I adjust to what ever new permanent symptom and move on, all the while fearing what is coming next. Well this last attack I was depressed for about three weeks prior to the actual onset of the attack........ did I somehow know it was coming? The worst part of all of this is that my family who has known of my disease just as long as me hasn't adjusted or adapted with me at all. They say they understand but how can they? It hurts me the worst that I have to explain my feelings over and over it's endless and exhausting. I have to be in pain and in fear everyday and now you want me to explain how I need you. No one can take this disease from me or fight against it for me but I feel like as I take my shaky steps into my uncertain future I should at least have some hands to hold. But here I am alone and in pain and fearful of what tomorrow holds.

Bloodletting?

So on Monday I went to see an acupuncturist to relieve this horrible neck pain. I have had acupuncture done when I was pregnant with my son and it was very helpful and even relaxing! This time not so much. They did cupping and bloodletting and then the acupuncture. Now I look like I had a date with a Hoover and not a whole lot of relief. I did end up having a major muscle spasm the next day. I don't think it's related but it really sucked because I was driving!

First day of first grade!

So my little man is off at his first day of first grade! Time really does fly, it seems like yesterday his little foot was poking me in my ribs! Tomorrow my little princess starts pre-k!