In the coming week, the plan is to have the broken intrathecal pump removed. Finally. I know I’ve mentioned it multiple times, but I had to take my time getting to this stage.
The milestones I set for this leg of my journey have come and gone. In that time, more things have happened. Good and not so much, but that’s ok. That’s real life, and I am a warrior.
It occurred to me that Thursday will mark the end of this chapter in my RSD story. It’s not the end of the book. But it’s a big part of it.
Before you are able to get a pump at all, you have to go through a serious process. Trials and planning take place, it’s not just “book the surgery and let’s get it done.” And that’s a good thing. After my pump trial – a week in the hospital that involved dragging around a heavy IV pole with a slow morphine drip to simulate the real deal – it took me several years to actually do it. I was terrified. For those of you who know me, you’ve maybe heard me say that I believe everything happens for a reason. And that I don’t have regrets about the medical choices I’ve had to make over the years. There’s really no point. I don’t regret those things because they happened as they were meant to. So the waiting after the trial was my way of keeping control in a situation where I actually have very little. RSD is not a kind or accommodating disease.
Although I’ve been in a mostly good place health-wise, there have been some rough days in the mix. I just don’t broadcast them. Why would I? I have a sort-of warped “magical thinking” thing going. If I don’t say it out loud, then it’s not something to worry about. If I don’t acknowledge it, it isn’t REALLY real. Right? LOL.
Obviously, I know I shouldn’t think that way. But when you’ve been diagnosed with disease after condition after situation – you get my point – you start to need measures of control. At least I do.
Recently, I’ve made some additional decisions for myself. Productive ones. Mainly because I need to take better care of myself and stop avoiding stuff. LOL.
One of the choices I’ve made, an idea really, is that I want to see the pump and the leads once they’re out. Call me a weirdo, it’s ok. But I want to see the device that kept me moving for five years. And I want to see the leads that were threaded carefully around my body to my spine, delivering life-saving medication to my entire being. I want to see them. Maybe even hold them. It’s part of accepting the things that have happened in my life, a bookend if you will. Whether or not I’ll be allowed to is another whole story. LOL. We shall see. Update to come!
I never asked for my immune system and a heel spur to completely upend my health. I never asked to have all of those surgeries and procedures. I certainly never wanted a hockey puck literally sticking out of my left side. But some of us get hit with the lucky stick. A lot apparently. I’m clearly one of those folks. And I’ve made my situation work in whatever ways I had to. That’s just what happened. With the support of my husband and family, a blessing I never take for granted, I’ve been able to stay hopeful.
So here’s hoping I will get to say a proper goodbye to “the pump,” as I’ve addressed it for five years. A goodbye on my terms. (Cue “My Way.” 🎙 😂)
Peace and painlessness,
7/24/16 Update: I posed the question of whether it’s strange to want to see the device after the surgery. I was overwhelmingly supported in this endeavor. It was reassuring and made me feel a lot less weird about it. Thank you all! You know who you are. 😉
#rsdwarrior #makeitwork #crpswarrior #byebyepump