Chronic pain · DISH Disease · Lost · My Journey · Setbacks · Surgery · Uncategorized

Unsure

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

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