Children · Chronic pain · DISH Disease · Family · Lost · My Journey · Setbacks · Uncategorized

Thoughts

58bcdbde5138c0c786cb1952d95e35edToday My son and his girlfriend brought me to have a Lido-cane infusion at the hospital. I swear that stuff is like truth serum if they only used it on criminals things would go so much easier.  It takes about an hour for it to go into my system and one of the nurses has to sit with you the whole time.I really love the nurses there. They care and it is a one on one counseling session for a whole hour.   I completely lost it while i was laying there in that sterile hospital bed. I started to sob like i have not done in so long.  I am having such a hard time accepting that eventually I will be paralyzed. I try never to say it or even to think about it for that matter but it has been weighed on my mind. I am so fucking scared.   They had my 19-year-old son come in and hold my hand to calm me down and we cried together.    He reminded me that he has seen me a lot worse that i was today and that even if I am paralyzed I will find a way to succeed.  At one point he told me what an amazing person I am because of how I always help other people and now it is time to let other people help me.  He said, ” Mom people alway praise how great my brother, sister and I am.” ” We did not get like this on our own. You did it.  You raised us to be this way and it takes one hell of a strong women to go thru what you have been thru and still have amazing kids.”       He kept wiping my tears off my cheeks.  In my mind I was thinking how I was the luckiest mother on the planet to have this exceptional child. What did I do to deserve these kick ass kids.  Don’t get me wrong they push my buttons sometimes but I would not change anything about them.    My son made everything all better. I wish that it could have been my mom sitting there holding my hand telling me that everything will be alright. In my heart I know that it will be but I just wish my Nana was still alive so she could make me a cup of tea and call me her angel pie once more.  

I have so many emotions running through my head.  When we got home from the hospital I took a nap then my best friend came to see me. We made the dreaded list that I have been putting off forever. At 40 years old who wants to have to go see a lawyer about writing a will, not me.  I need to go talk to my foster parents about some of my financial concerns and fix my medical proxy again.   I remember 11 years ago when they first explained this disease to me I could not wrap my head around it so I had to make my best friend my medical proxy. There is no way I could ask my husband to bear the burden of pulling the plug. I do not even think that he would. He loves me so much that he would keep\ me alive forever. I just fucking hate this bone disease. To know that is going to fuse all my joints together slowly but surly. It is happening so rapidly in my spine to me having a spine operation is like getting your oil changed in your car.  I never really tell anyone how I feel, You who read this are the only ones that know.

This weekend we are taking the kids to the mountains to our little getaway place.  I want to move there.  I am going to ride my 4-wheeler to my favorite spot and enjoy the silence.  Take some fabulous photos.  I am going to bust out my new chainsaw and cut up wood just because I can.  I love that thing. My neighbor up there calls me skidder Bitch. I think it is a riot.  Then if I am still stressed out I am going to get out my rifle that i bought myself that has barely any kick back and do some target practice.  Most of all I am going to enjoy the time with my family and just be.  This will be the first time in a year that my 22-year-old step son has been up to our place.  He has six months clean and sober and I am so fucking proud of him.  I love that kid to the moon and back.   My daughter is going to be riding her new dirt bike she got for Christmas for the first time I am wicked excited for that. I can’t wait to ride it either.  We are also taking my friend’s son who is 14. He is having some problems in and out of school. I am hoping to talk to him so i can find out what is going on before he takes the road that I traveled when I was his age.  I love that we disconnect from the world when we are there since there is no phone service or internet. It is great for the kids!!!1525638_10151883404020848_1666749687_n

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