Today 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!!!
I’m not sure how I’m going to do it yet but I am you going to do it. I will get it done. Not sure how much more I can handle with out falling apart . I think I’m about to break. I’m about to explode inside. I just need to escape. Not that escaping fixes anything but I just feel like I need time to breathe. So I knew that the news wasn’t going to be good news but it sure wasn’t what I expected. I wasn’t expecting that I needed my neck operated on again. I’ll admit that I’m scared. Scared of the unknown. Scared that I won’t continue to be healthy and heal again. But I know that I’m strong so I’ll bounce back. What truly scares me the most is not being able to read and write after my surgery. The last surgery I had it took 3 weeks for me to be able to read and write again .So this time I imagine it will be even longer and I hate being not being able to read and write. It’s the only form of communication I have when I can’t talk . Having that taken away from me, it feels like I lose my power. Maybe I’ll have to take up sign language. So now knowing that I need my neck operated on top of the fact that the next step down from that will be my thoracic spine because that has bone spurs growing into my spinal cord. He also told me that my lower spine has lost all its disc height and there’s no more fluid left. That it’s starting to fuse together on its own there’s nothing they can do about it expect give me some steroid shots for the pain which that’s useless. So I’ll just continue to exercise and do ab workouts to strengthen my muscles so that way all the pressure is not on my bones. It is so hard to stay positive when all of this stress is weighing down on my mind. Which makes the simplest of simplest tasks that much more difficult. My brain is constantly going a hundred miles an hour . I can’t even focus. Then all the stress it puts on my family. What are they going through? What’s in their minds. My husband has a hard time communicating on how he feels which to me is a problem because I really want to know what he thinks about it. Obviously I’m going to go into my next surgery more prepared. Each time I have a surgery I’m more prepared than I was the last time . I have a team of people in place that are amazing. With them I put together my rehab, visiting nurses, my plans, my living will, (in case something happens). I have a medical proxy and I have a pain team in place. At this point I’m stronger than I’ve ever been going into an operation. I feel the healthiest I’ve ever been. My recovery time should be pretty quick. I’m just so scared of the unknown. I’m trying not to focus on the what ifs. How do you explain to your friends what’s going on in your mind. You just can’t. I don’t want to hear the I’m Sorry’s or I feel so bad for you. I don’t want people to Pity Me. I just want to surround myself with positive outgoing people. People who want to strive to do the best they can do when all the odds are stacked against them.
And me being the nut that I am, I asked a neurosurgeon if I can run a marathon. He told me no but I can do 2 to four mile runs a week so I’ll take that. I guess I’m just going to have to live my life like I’m not having the surgery . I’m going to keep planning things like I have a healthy body. I have such a hard time accepting that I’m not normal but I don’t have a normal body. I keep pushing myself and pushing myself to the limits. I’m exhausted every day. Every day I wake up in excruciating pain and I don’t think anyone truly understands what it’s like to be me. It’s so hard trying to take care of my 3 kids and keep my marriage going on top of focusing on myself. Trying to just be happy. I just feel so lost right now
May 15 2017
Setbacks, we all have them and i just had a huge one. It’s so frustrating. I have a goal . I want to become a finalist in something called the isabody challenge. I’ve been working so hard towards it for the last for months and it is only two weeks away.It’s been so difficult.
When you’ve been down and out for so long your body starts to shut down. I only ate once a day for a long time. Sometimes I would go all day without eating . Now I am trying to eat 6 times a day. It is so tough and meal prepping sucks. It kills my back to stand in one spot for long periods of time to cook all that food for the week but I have to find a solution to this issue . I been working on me as a whole. Getting healthier, working out everyday, meeting new people, trying to be a better version of myself while still taking care of my family and animals. Managing everything is crazy and then my setback came in the form of my MRI results.
I can always tell when somethings wrong with my spine. I can tell because my perception of things is off. My body doesn’t work right, its the little things. 2 weeks ago I got into 2 car accidents in one day. They weren’t bad car accident I missed judged pulling into the parking lot by like an inch and then a woman stopped short in front of me as I was pulling out of a side road .She jammed on her brakes to let another car out and I rear ended her. So I knew something was hitting my spinal cord because my reaction time was a few seconds off. But a few seconds could cost me my life .
I didn’t want to go get my MRI results because I’ve been doing so well lately. Its like I finally got a chance of what it feels like to have a healthy lifestyle. A taste of the good. I did not want to ruin that by having another spine operation. So I waited till after I went to strong camp even though I knew that results were in. I’m trying with all my might not to let it get me down. At the end of the day its in the back of my mind weighing on my soul because I know I’m going to need another operation. In my heart I feel like I’m healthy so the recovery shouldn’t be too bad but I know what it entails. I know that now when I wake up I’m not going to be able to read or write and it is going to take longer than last time to come back. It scares the ever living fuck out of me. I just keep pushing the fear out of the way!
I sat in the parking lot of the doctors office with big fat tears rolling down my face as I read the MRI results. My lower back is messed up ,which I already know that and not a big deal. I have a tear in my disc, spinal stenosis, , disc protrusion, some narrowing ,and some other stuff. No big deal everybody has something going on in the lower back. The thoracic spine which I just had an MRI in 2016 and 2015 now states T5-6 disc Protruding, T6-7 mild spinal cord impact with some protrusion. Okay no big deal but here is where it gets tricky, T 11-12 I have already had operated on now went from mild to moderate spinal cord compression with more protruding and bone spurs growing. The cervical spine they could not see because I have so much metal in there already. I will need another test for that. So I find out more results next week when I go to the neurosurgeon. I’m trying not to let it bother me. Just paste on the fake smile . I’m just going to keep on keeping on.
I just went to counseling and we were talking about suffering. Why is it that I don’t think I deserve a good life and when good things happen to me why do I feel like I need to suffer. Why do I feel like I don’t deserve good things. Why am I not worthy. These are just some of the questions that run through my head on a daily basis. Probably most of it stems back from when I was a child but shit I don’t have time to go back that far. I’ll be in counseling for the rest of my life. I should start with the recent years right? What the hell. I think it’s because every time I start something that’s good in my life I get sick or I need an operation. Operations where something could go wrong and they always do. If there was side effect to get I would get it. Every time I started something I would have an accident and be forced to stop it. So after years of this happening it was a common occurrence and it became ingrained in my brain that I just have to suffer for some reason. Well this is not true! I do not deserve to suffer . I do not deserve the things that have happened to me. I deserve to live a happy life.To be healthy and whole. I deserve to feel alive to know that when I start something that I can finish it without having any negative thoughts. In order to do this I need to change my mindset and changing one’s mind-set is a hard thing. After being sick for so long all you think about is sickness. Now I don’t think of myself as sick. I think of myself as healthy. I deserve to have good things happen in my life. This suffering has come to an end.