An Idea….. 

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, 

Beck ❤️

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


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