This week, I’m traveling with my family. This time last year, I was preparing to have my medtronic pump removed permanently. I’ve been thinking a lot about where I was a year ago, before the pump explant. Trying to capture how I felt from then until now isn’t as simple as it seems. So I started to look back at the entries leading up to the surgery, and decided to re-post “I don’t want it back,” from May 6, 2016. It’s perfect because the decision to remove my morphine pump altogether – and not replace it – was incredibly tough to make. But I realized, it was time for a fresh start. It was risky but so worth it. Nearly a year later, I can say that I made the right decision.
Here’s to knowing where we’ve been, and where we hope to go. It’s been quite a year.
I Don’t Want It Back
Earlier this week, I woke up and went about my usual routine. Except something was different. Before I left for an appointment, I checked my appearance and came to a decision: I want the pump out. No going back now! I mean, I actually could change my mind. But I won’t. Not this time. Not now.
Here’s why: Over the last few months, I’ve made reference to feeling like I’ve awakened from a eighteen-year nap. I count the initial lupus years in that time frame. Dealing with disabilities changes everything. There is so much lost – time, health, everyday joys and even people. I’ve been lucky, my family has been with me through everything. I’ve lost a couple of people I called “friend,” but realized that they ultimately were not meant to stay in my life. That’s ok.
In addition to the obvious physical issues that arise when someone is “sick,” the patient goes through emotional and psychological peaks and valleys. Depression. Anxiety. All of it. I was no exception.
After I gave birth, I lost most of my pregnancy pounds. But a few years later, when pain became my constant companion, mobility was difficult. I didn’t move as much as I should have and eventually gained a lot of weight. It wasn’t a good time, on a number of levels.
It took Weight Watchers and sheer will to help me lose 60 pounds, in the years prior to my major surgeries. Right before the pump implantation, I read all about how morphine can contribute to weight gain. Some small part of me denied needing the operation because I was terrified of gaining it all back, among other things. In the end, pain made my decision for me. To the O.R.! Some weight gain was inevitable, but I managed to lose a few pounds here and there over the years. Not enough to make me value what I saw in the mirror, though.
Obviously, I had clothes that fit me during that time. I’m a jeans girl, I wear them pretty much every day. Looking through my dresser for donation items last week, I realized I still have all of the jeans from when I was much heavier. Something worried me about getting rid of them. So each time I packed up clothes to give away, the jeans would return to the wardrobe.
My sister, Chrissy, gave me a Fitbit recently. It’s motivated me to walk a lot more and move as much as possible. I’ve started losing weight again. I actually had to order new jeans!
Anyway, I bring up the weight issue because as I’ve lost some, I’ve become happier and emotionally lighter. Cleaning things out of my closet made me realize that I’m finally willing to get rid of the things that don’t fit, items that might have given me a backup plan. “If I gain weight again, I’ll still have my old stuff.” It’s an excuse. There is tremendous fear involved in this process. This is how I’m viewing my pump.
Having the implanted device fail was horrible. The entire experience was a disaster, especially withdrawal. I could have easily had the pump replaced when I was ready. But stepping back from the situation, as I was forced to do, was the best thing that could have happened. I absolutely see that now.
I’ve learned to live without the pump, despite fearing the unknown and the pain I’m still in. Somehow, the universe felt it appropriate to give me a second chance at really living my life. Not merely existing in the background of it any longer. It’s impossible to explain what that feels like. I will say, however, that I cannot remember being as clearheaded as I am right now.
I would rather deal with whatever lupus and RSD throw at me then lean on the old backup plans. In this case, by retaining the broken device, I was able to use the security blanket of, “if things get too bad, they’ll just replace the device and use the leads that are already placed in my spine.” But I don’t want it back.
I don’t want it back. What a revelation! I am a fighter, a survivor. It’s funny the way that illnesses help us realize how strong we actually are. When circumstances are lined up in exactly the right way, we find out tremendous things about ourselves.
Admittedly, fear forced me to make a lot of my medical choices. Especially as a mother! I was always thinking about my family. I don’t even remember the details of certain procedures and meds, the trauma of them forced me to block them out. Side note: at some point, I want to see ALL of my medical records. But not now. One needs to be prepared for that level of WHAT THE HECK?!?!?!
Anyway, a few months back, at my pain management doc’s office, I was asked what I wanted to do about the pump. What the heck did I want? Leave the pump in? Take it out? Get a new one? My answer was simple: I’d know in a few months. In that timeframe were two milestones I needed to pass, then – and only then – would I know if I wanted, or needed, the pump back. The milestones were the professional dance costume job in April and the middle school show this June. The first went really well. I survived! The next is rapidly approaching. And I’m fine. (Check back with me in June, LOL).
The goal now is to ditch the pump sticking out of my side. Did I not mention that this hockey puck-sized device sits below my ribs on the left side of my abdomen? It’s superficial so it can be drained and filled. If I was someone who wore fitted clothes – I’m not (yikes) – my style would have been seriously cramped. But, jokes aside, I don’t need the reminder of where I’ve been. This gal is well aware.
Same me, just wide awake and ready to really live.
Peace and painlessness,