I am slowly getting worse. The steroids are not working as well as they did or working as long. I am getting more numb everyday. Now the muscle spasms are back. When I talked to my doc here at the hospital about the paralysis of the bowel he asked me if I was seeing my MS doc soon. I am still waiting to here from the MS clinic about an appointment to talk about the dosing of the chemotherapy. I want to ask him about when the chemo will work.
     I am getting more symptoms lately. I get numb around the bottom of my chest. When my chest is numb I can not move my ribs that are numb. It is getting scary.
     My doc here has refered me to a couple of specialist. I see a cardio doc the first part of April. To decide how to treat my heart problems.
      I talked to my SW today about getting funding for a cooling vest so I can go out this summer. So hopefully they will I should know in the next couple of weeks.
     I am going to start voluteering at SACK soon. I am going to go in once a week to help take care of children when their Mum's are in counceling.  Then I will do some office work. I am starting the crisis intervention training soon once it done I will work the crisis line. They have cell phones to do this so I can do that from here. It will help me more then the women I talk to. It will give me something useful to do.
      Today in rec therapy they showed me how to get the pic's off of my cammera. Now I just have to get the software so I can edit them. I want to take lots of pic's of Shadow (my dog) & Bruce. I have a mp3 player but I have not loaded music onto it yet. One of the rec staff is going to help me do that. So I will be able to listen to music anytime I want. I am continueing to make my life more comfortable.
      I am getting a new chair base (motor) hopefully soon. Once I get it I will be able to go home when I want without it taking too long. I will also be able to go any where I want.
     Even with the paralysis getting worse I want to plan for a future where I am living life not watching it pass me by.

Replies

deleted_user
deleted_user

Praying for you Kayce. Stay strong!
dxat59
dxat59

You have such a positive attitude. I was feeling down and sorry for myself after a bad weekend until I read your journal. Thanks.

Gentle hugs and joined at the heart, LInda
lchoppel
lchoppel

It is wise of you to plan now for the future. It should help stop your worrying knowing that you have a plan in affect. I\'m sorry things are getting worse for you. I will say some more prayers for you.

On the other hand, I\'m so proud of you for volunteering your time and energy to the aid of others. I understand what you said about helping you more than others. That is a very positive attitude. Very inspirational for me to see all what you are doing and in the shape you are feeling these days. I understand what Linda is saying.

Go techno girl! Get all the help you need to learn how to upload pics and music. I have an ipod and don\'t know much how to use it. My kids keep stealing my headphones and it prevents me from using my ipod! I get much enjoyment from my music and hope you do too. I\'ve been looking at the Nook or Kindle recently to see if this is something I want to invest in. It seems the Nook Color has a special going on, saving $30 on it. That seems like the best one on the market for the money. I would like to listen to my books also so that is a big feature for me. Try googling them. It might be a nice bday present for you, or anniversary gift if you enjoy reading.

I will be thinking of you Kayce. God bless you.
deleted_user
deleted_user

Keep up the positive attitude!! xoxo