I’ve been stuck in bed basically for seven months now, not able to stray to far from my bed because of the type of pain I’m in. The first specialists, my neurosurgeon, I saw after I had my newest MRI wasn’t very optimistic in December. He said they could do a spinal fusion of the three lower levels in my spine and those have super high complication rates and high failure rates. If a fusion fails you end up in a worse position than before. So he recommended looking into different pain management options.
I remember feeling so defeated when I left that office. He mentioned that mom and I should look into signing up me for disability. I don’t think there is any shame in that but to be so young and have to start thinking about it... it felt like if I took that path I would be giving up and admitting defeat. I didn’t realize at that moment that I had to come to terms with the fact that I’m not just sick but I’m disabled. I’ve had to mourn dreams and ideas of who I thought I would or should be by twenty-seven. I remember telling mom on the ride back to her house that I felt worthless and like a burden on everyone I knew and loved. It’s not easy watching everyone live these full and rich lives while I’m still and always stuck.
But then I was handed hope when I saw a pain management doctor. It felt like maybe I had a shot at a more normal life. Even though I don’t believe there is anything wrong with receiving disability benefits I didn’t and don’t want that to be something I feel forced into right now. So when the doctor explained that I was the ideal candidate for spinal cord stimulator I was relieved. Because even if it doesn’t help I will know I’ve tried everything. I will know I haven’t given up.
We started getting the ball rolling on this process. You have to have a psychiatric evaluation and clearance by a therapist. They have to send over a letter of clearance to your pain management doctor and then you have to decide which brand of stimulator you think would best suit you and your lifestyle. The doctor helps you go through the information and helps you weigh pros and cons. Then you get a trial stimulator that is taped to the outside of your back and a couple leads/cords are placed inside your spinal canal to send currents to your brain that helps to block the pain signals. You keep the trial device on for 10 days. Then if during those 10 days you feel a pretty significant improvement they recommend you get the actual stimulator. This requires a surgery where they place the device under the skin and place the leads in under the skin so no wires are visible. It will look like a pacemaker in that aspect.
After I was handed this hope the world was struck with COVID-19. I had just completed my psychiatric evaluation and passed when we went into lockdown. That meant all elective procedures where cancelled. So I’ve been waiting and trying to keep positive. Waiting and knowing that it’s going happen. I got my hopes up when doctors were allowed to start doing elective procedures again. I called the office and asked for a timeline. I was told mid June hopefully. Now that it is almost mid
June and I’ve heard nothing, I made the decision to call again. That’s when the nurse explained to me that they don’t know when they will be able to do this surgery. Every device comes with a representative from that device’s company and since they travel to different hospitals and surgery centers in their assigned regions the surgery center where I will be having mine implanted at has decided that it is too big of a risk for Miss Rona to everyone involved. So even though I understand the reasoning and I also want people to stay safe I can’t help but feel disappointed.
It’s frustrating when you feel like waiting is all you ever do. I’m still holding onto my hope that it will be within the next few months and that the stimulator is going to change a lot for me even though I understand I will never be completely pain free. But today I’m going to be sad that I have a lot more waiting to do and tomorrow I will focus on the positive things again. I’m so grateful to everyone in my life that is allowing me to wait and see instead of pushing into signing up for disability. I’m grateful I’m being allowed options instead of being pushed toward something that might be good short term but not long. I have a lot things to be grateful for and reasons to stay positive but in a journey like this it’s impossible not have days filled with disappointment.
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