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the bad and the good



I have lived with my dad pretty much since I had the cane back in 2003 so he is used to dashing into my room or calling out my name anytime he hears a bump. back then the issue was me falling since I could not walk as well as I do now. We put the bed back up against the wall so he can hear if I hit it during my sleep. (I still remember him holding me on my side in 2005 because he heard me hit the wall having a seizure.)


I asked my brother if he heard me call for help during the seizure Friday but he said he was sleeping. He works 3rd shift so hes usually sleep during the day. Though my dad is retired now, he works part time and he spends a lot of time outside messing with the yard. My brother told my dad to get me a life alert or something so I can let someone know when it happens. One thing I do now is leave my door unlocked. I used to lock it for privacy before but now in the bathroom and in my room I leave it unlocked just incase I do fall.


Yesterday I had a horrible case of parasomnia. I woke up around 5am but was still sleepy but was going to go to early church service because I was afraid to fall back asleep. Unfortunately I could not fight the sleep though it wanted to fight me. Repeatedly I was screaming at the top of my lungs for help. It felt like someone was squeezing my whole body all over and choking me. At one point I was using all of my strength to push something. Finally I woke up and I felt fine. My friend I used to work with is a minister so she prayed with me lastnight because she believes it is demons attacking me.


Her prayers worked. I slept good, woke up, and slept some more. No seizures no nightmares. Unfortunately I have had a headache all day :( My mom gave me some bayer chewables so I hope that helps. Im going to the neurologist on Wednesday. Still deciding on getting the VNS. Its just rather frustrating because Im taking the clonazepam and still having parasomnia and taking 2000 mg a day of keppra and still having seizures.I just pray God will take away the suffering.


I do want to say life has been good since I moved here. I spent the day with my mom yesterday. We went to spoken word poetry night at the coffee shop and it was fun yet relaxing. My mom drove since it was dark. My mom carried my hot chocolate as I took my time up the steps. Today I made some calls to get my SSDI reinstated and get my Medicaid switched over. It feels good to be able to take my time and do whatever I like with my day and have my family to help with anything.


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Katrina, I've read this a few times and don't really know what to comment. If I were you I would just take it easy for a while and just have some time with your folks, just as you did with your Mom, enjoy just being together. For now it seems like a holiday, it will not always be like that so make the most of it.


I wish there was an answer to what is happpening with your seizures, it must be frightening that despite the medication you are on they still continue to occur. I hope you do find a solution soon.


(((hugs))) from Sue.

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Hi Katrina, it seems that you are happy to be home.Please that you are enjoying your family, good that you and Mom had a fun night.

I keep on praying for you, and for a solution.


God bless



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