This week I have had the opportunity to shadow at a Pain Clinic. I am praying I get to end up working there when school is done next month. I am loving it there. I knew I wanted to work in Pain because I love that I can relate to these people. I have always wished that the people taking care of me could really understand what I was feeling so I am so happy I can potentially be the person that can do that for my patients. But shadowing at this clinic has had my mind just spinning. A physician I was working with today told me that he knew my pain doctor and that he was one of the best pain docs he knew.
So you all are thinking...."Well that's awesome!"
I was thinking that too.... but I was also thinking that this information makes me feel uneasy because I am in the middle of potentially switching pain doctors. Anyone who sees a specialty doctor knows that you will go through some bad ones before finding one who you really love and feel confident will take care of you. Well I was lucky. My current doctor was the only pain specialist who would see me when I was diagnosed because I was a minor. So we didn't have many options.... but he has been nothing short of amazing. So we were really lucky. I have had the same pain specialist from the day I was diagnosed. He diagnosed me and has taken part in every part of my treatment since day one. He is incredible. I have always felt like if I needed something he was just a call away and would ALWAYS listen to how I felt. He knew that if I called and said I needed a spinal block, that I needed one... so he would squeeze me in and get it done. I knew that he respected me and my need to advocate for myself and he held my hand and comforted me through some of the most painful and difficult times of my life thus far. I am so eternally grateful for his encouragement, kindness, and knowledge.
But I am struggling too. My Spinal Cord Stimulators are not working right so I am at a point that they will need to ultimately just be removed. I can't have many more spinal blocks because of the scar tissue they are causing and they are becoming pretty ineffective. And my pain doctor is out of options. We have tried everything that he has in his "bag of tricks" for this disease and so what else do we do? I need to have quality of life not just survive the day. Another thing I am struggling with is that a visit to him is a whole day thing. The drive from my house is 1.5 hours one way. So three hours in the car and roughly an hour (give or take) spent in the clinic means at least half the day. That doesn't work anymore with working a Monday through Friday "9-5" job.
So change is getting to the point that it is a must. I no longer get to wait and see what happens. I have to do something different than I am doing now. So I am working on transferring all of my pain care to the University of Minnesota and praying we find someone there.
I was feeling pretty good about this change until I began working in a pain environment. It is so awesome to see different things but it makes me not want to leave the comfort of the only doctor I have ever known in this capacity. I know exactly what I am going to get when I go into the clinc or have a procedure. I know all of the nurses (and LOVE them) and most importantly, I have an increadible relationship with and respect for my doctor. I know that when I get spinal blocks, I know exactly the routine from the second I leave my house in the morning until I get home in the afternoon. I know exactly who I will see at the clinic, the process of getting ready for the block, and exactly where I will lay in the procedure room. I know my doctor will come in and happily say, "Hi Hall Family!" to myself and whoever came with me. I know that Jill (one of my favorite nurses) will come in and put my IV in and ask how life is. I know that she will want to stay with me through the whole block, prepping my site and holding my hand the whole time. I know exactly what meds and how much of each I will get in my "IV cocktail" and I know that I will giggle as they tell me who gets to be my "bartender." I know that when my doctor comes in the room to start the procedure he will talk about old relationships of mine and how he "just really likes my fiance better than the last one" and we will laugh. He will tell me that he swears he has never seen that tattoo on my back.... the same one he has said that about for a year or two. When the block is done, I know they will bring me my favorite apple juice without even asking and they will all come give me a hi and say goodbye before I leave.
The very idea of leaving that comfort seems crazy to me. But staying and not getting any more pain relief seems even more crazy to me. So I am struggling for change and with change. I know that I need change and I do want it. But the idea of leaving my safe, comfortable place is terrifying. I am blessed to be able to express this with my mom and fiance and be answered with love and encouragement. They make me know that we will find any treatment possible for this illness. They encourage me to continue to explore the different ideas I have for spreading awareness and they promised to love me through it all. So they remain my comfortable, my safe, my familiar while everything else changes.