Teddy Grahams and Vanilla Pudding

Before anything else.- The ability to comment has been fixed. Anyone is able. I would like it if you registered so I know who is following or leaves the messages. While this is my open and honest means of expression I would rather you be able to share anonymously than not at all.

T\oday is going to be a good day. My nurse is named Noel - he seems absolutely fabulous. Just his spirit and excitement brought a smile to my face immediately - AND we share a name. For those that don't know my middle name is Noel. Only difference Mom - his birthday is at Christmas NOT June. Hehehe. We already had a good laugh about how many Christmas decorations we have with "Noel" on them. Something we both have grown to love as we got older.

As I tried to warn earlier - I intend to write very honest experiences and feelings. I know that it may be hard for readers and I can't apologize but I can say thank you for reading and showing an interest in my experiences both good and bad.

Before I started blogging this morning I lay in bed (feeling like I literally was in a serious car accident last night). Last night I had the hardest myoclonus episode yet. Physically it was thrashing, exhausting, terrifying at times. As I experienced it this time, I prayed why do I have to be awake and feel the pain, the fear and know all the terrible things happening to my body. Up until I believe yesterday I had never had head involvement in these episodes. Let me start by saying i had four episodes yesterday. They lasted anywhere from 40 to 90 minutes (I believe). The first one started at 4 a.m., the last one at 11 p.m.

The last two episodes were very emotional for me. I try so hard to be strong as I experience them. I believe giving in to emotions doesn't do any good. I broke down, tears flowed and I cried like a baby. Brett does a wonderful job reminding me that I need to breath. take nice deep breaths. Try to calm down. The tears flow and the crying feels like it rises from somewhere deep inside. A place of fear, frustration, pain and exhaustion. At times I am angry - angry because the pharmacy delayed filling the prescription on time, angry because the nurse doesn't seem to see any rush in administering my meds on time so that this doesn't continue to happen. Even anger with the doctor for deciding we should try to Robaxin pill vs IV. We did it once it didn't work, why on earth are we doing this again. I'm the one that suffers - not him. As I shook and jerked and kicked and hit - and did more head banging than any sober person would do at even the best concert - I'm even questioning how much alcohol (or other) it would take for a person to intentionally shake their head in such a violent means on purpose. My back is arching and twisting at the same time. When such unnatural movements happen my mind is almost yelling at my body - STOP YOU DON'T BEND THAT WAY. My back doesn't listen and like a rebellious teenager it turns and twists even further.my legs kicking sometimes slowly then another instant faster than I believe my body is capable of moving. My left ankle twists with such intention. I scream in pain. It seems each time it does this it twists further inward. Brett helps remind me again and again - relax deep breaths.

As the episode comes to an end I'm scared the left  side of my face is almost numb. It feels so weird. One of the neurologists favorite things to do is have me smile big - I hadn't quite understood until last night. when I tried to do it, I felt like that part of my cheek was droopy, it didn't feel like my cheek muscles were tight. I found myself fighting the muscles to force the into the proper formation. I got it there but it scared me. More tears flowed. my body feeling like a rag doll. so often during the episodes - especially this one. It wasn't the longest by any means but it was the worst in terms of strength. My body kept fighting and insisting on the violence despite the feeling that the muscles were jello.

This morning the pharmacy was lax in getting my Robaxin (a strong muscle relaxer that if given by IV every six hours. This is the first Iv dose since the doctor agreed to stop trying to utilize the oral option. I got IV ativan in hopes of relaxing some before the Robaxin arrived. The nurse was wonderful pushing through with the pharmacy, taking care of her other three patients and of course me.

Before I started blogging this morning I reflected on my body. I feel like I've e been hit by a car or some other accident. I rolled over and smiled. After the episodes the nurse had brought my after "exercise" snack. i was so exhausted and weak. I had a small vanilla pudding a teddy grahams. I don't remember the last time I ate teddy grahams before this.

Its nearly impossible for me to go through this experience without thinking of Miah almost every time. I worry about how the kids are handling it. It was so good to see Alex and Sean last night. Brittany decided to stay home. I cried quietly for them. it hurts me that they have to see me like this. I hate the amount of loss they have experienced in their young years. I can't begin to imagine the fear and emotions they are feeling just walking into a hospital room - much less to see your mom sick and having been here 11 days;

I'm going to wrap up for now. I'm hopeful that breakfast will be here soon. I am ravenous after having all those episodes yesterday. I am looking forward to a big breakfast. I am praying that today is less active. We have also requested a sit down meeting with my lead physician in hopes of gaining a better understanding of where I'm at now and what the plan is.Also hoping to get  better grasp of who all my doctors are an what they are contributing. We have random doctors from specialities I never knew existed. Lets hope breakfast is here soon. I'm starving.