Monday, December 10, 2012


Do you know what is odd?
Having a conversation. Like normal people do, but not following. Even a simple topic. In normal conversations one person says something and the other responds. 
I totally forgot why my friend would say what she said. I can feel my neuro symptoms sinking in. I am typing letters where they don't belong (thank goodness for the squiggly red line). If you've noticed that my posts aren't always focused, it is because I only get a limited amount of time before my brain quits one topic and moves on without even asking me. 

(I was speaking with a college friend recently who noted that she read a book by a man with, I think, alzheimers. He wrote what he experienced while he experienced it. I think I might attempt to do this and move away from the updates... If I can remember..)

This is very typical of my communication lately. Well, life in general. I got stuck in the shower this afternoon because I could not remember why I was in there, not to mention the steps to washing my hair and getting clean. Even tonight. I sat down to do my Christmas cards hours ago. Now writing is hard on my hands so I kind of expected that to take a while, but my level of distraction has been out of this world. My pain has progress to that point of numbness I spoke of in my last post so everything seems to have stopped as well. I started conversations with fellow Lymies on Facebook, ate dinner, went and found my scarf loom when I suddenly remembered where it was (important to do before I forget again), responded to some important emails, worked on a new scarf (for just a few minutes), watched (still watching) Monday Night Football (though I keep forgetting who has the ball which is very unusual for me), had the following conversation, and then decided to write about it. And since that decision (and starting this sentence) I have stopped several time to remember what exactly I am trying to do. And with that I will leave and attempt to finish those cards...

So here is the conversation:

omg caitlin i am looooosing my mind. in th last five minutes i have spilt my coke on the carpet, tangled myself im my laptop cord, triped over said laptop, cleaned up said coke, then tangled the yarn around myself and laptop cord, THEN lost my crochet hook...
oh no
damn that coke
well its gone now
i love pepsi
coke is too "spicy" and fizzy for me
omg i forgot what i said and i was thinking well thats out of the blue caitlin, but im glad you like pepsi....
then i remembered.
pepsi is too lemony for me

Sunday, December 9, 2012

I need help

I keep thinking to post I must have something profound to share. I guess I just need to remember that this is meant to chronicle my experience. 
This week is very hard. I think I am herxing again. Though I don't really know why. I am having horrible nightmares making sleeping hard and migraines when I am awake. 

Luckily, I was able to spend one day visiting friends who are like family. I had such a great time, but have really paid for it. I was gone for all of 1 day and came back Thursday  I am still very sore and sick. I feel like I have the worst hangover of all time and the flu. This week I wasn't as able to stay positive when people asked how I am. I want to say that I am doing better, but the truth is that I am really suffering. Now, I know that the treatment is hard and some of my current symptoms are indicative of die off. (I spent one day feeling like I had a sunburn on the entire right side of my body- die off in my nerves.) Walking and standing has been hard. I haven't been able to take care of myself well. I can barely fix meals, even the ones that are pre-made and frozen. The dementia is still present. My pain is, well, let's put it this way, I pass out when it gets too much to bear and my brain kind of turns my body numb. When I come to, I know that I am in pain, but it doesn't quite register and neither does anything else. Conversation and reasoning go right out the window with my perception of pain. 

I need help. Plain and simple. I need financial help to keep a roof over my head and meds going into my body. I have applied for SSDI and Medicaid. I am still waiting to hear on both. I have at least gotten food stamps. That definitely helps but it isn't enough. I really really hate asking for help. I struggle daily with my inablility to provide for myself. I keep thinking, "I should be able to do better than this. I should be able to work, think, walk, talk, eat, sleep, make money, etc." But my harsh reality is that I cannot. I need to accept that and swallow my pride and ask friends and strangers even to help me get to the next step. This breaks my heart. Please if you read this, share my story and fundraiser with your friends and family. Every little bit helps. Even pocket change. (My fundraiser link is on the right.)

This process has taught the importance of the little reminders. I typically use my "good" time to spend with friends or family. I think this has given them an unrealistic view of how bad I really am. It can take me days to  prepare for an hour or two out of the house. And afterward, I am stuck in bed or on the couch or crawling on the floor between the two. I will not stop this though. Someday it will not take days of prep and payment after. Someday, leaving the house will just be the norm. One day. But in the meantime, it is pointless to fight for my life without regular reminders for what I am fighting. I need to see the people I love and have fun. It keeps me going in between.