Hi all, it’s Maggie.
On Monday October 9 the office assistant from my neurosurgeon called and said that they needed to cancel my Baclofen pump surgery because the hospital doesn’t have any more pumps. She said the only factory that makes the pumps is in Puerto Rico and until Puerto Rico has power, and the factory can get up and running, and the pumps are manufactured and shipped from there to here, my surgery is on hold indefinitely.
I could barely absorb what she was telling me. I still can’t wrap my mind around it.
It was just this past Thursday October 5 that I was able to get my pump surgery scheduled for Wednesday Nov. 1. I was so excited and so happy. Even though I’m in the worst pain I’ve ever experienced in my life, I could tell myself 26 more days until the surgery, 25, 24, etc., every time I felt like I couldn’t bear it any longer, and every time I felt sick and sad about how much I can no longer do because of the severity of the pain: shower regularly, have a give and take conversation longer than a half an hour, make a grocery list (because that involves standing up and crouching down to see what we have and then thinking clearly enough to grasp what we’ll need and want to get through the next week).
The spasticity is so severe that I can no longer stay upright for more than a minute or so and my walk has turned into a halting shuffle. Basically, if I double over while shuffling quickly I can still change my cat’s litter and refill her food and water; or I can brush my teeth and wash my face and comb my hair; or I can make myself a dinner of canned chili heated up in the microwave and a turkey and cheese sandwich and carry it to bed.
In the month before my pump trial, I’d already had to give up driving, grocery shopping, running errands, socializing outside my home. Now I’ve given up any real housekeeping, any personal hygiene beyond basic, almost all socializing in my home. Agh. It’s making me so depressed to count all the other ways my life has become so small that I need to stop.
It’s also making me feel like such a terrible failure.
And I feel so selfish because I’d read articles about how the people of Puerto Rico were suffering, and although I felt so much sympathy for them, it never occurred to me that it would affect me personally. And I feel so guilty because now I want so much for them to get power so I can get my pump so I can be out of this pain.
So I feel like a failure because I’m just watching myself lose what activities of daily living I had left, and what quality of life I had left, and I don’t know what to do to stop it. I just can’t manage the pain enough to get back what I had. The only way out that I knew of or know of was the pump.
And I feel like a bad person because all of a sudden I’m monitoring conditions in Puerto Rico because I need the Medtronic factory to function so that University of Michigan hospital can be sent a pump so I can get my surgery not too much later than Wednesday November 1 because I feel like I can no longer bear the severity of my pain and the damage it’s doing to my life and to my sense of self -- and along with that, I can no longer take care of my sweet daughter the way she deserves, or be an equal partner to my sweet husband in any way.
And there are countless people in Puerto Rico with families who are suffering so much more than I am, but I can’t help but think: please oh please make my pump.
Is there anyone else here on the Board who is waiting for a pump because of the Medtronic factory shutdown in Puerto Rico? If so, will you tell me how you’re coping with it, because I am obviously not doing well?
And I would be so grateful to hear from other pumpsters or pumpsters-in-waiting or anyone else who could give me advice or support. I feel so alone – almost like I’m crazy. It’s been 5 days since I found out that my surgery was canceled and I haven’t been able to bring myself to tell my family or my friends because I feel like I’ve become such a burden and am only ever giving them bad news, but I have to start to tell. Please help if you can.
Maggie
On Monday October 9 the office assistant from my neurosurgeon called and said that they needed to cancel my Baclofen pump surgery because the hospital doesn’t have any more pumps. She said the only factory that makes the pumps is in Puerto Rico and until Puerto Rico has power, and the factory can get up and running, and the pumps are manufactured and shipped from there to here, my surgery is on hold indefinitely.
I could barely absorb what she was telling me. I still can’t wrap my mind around it.
It was just this past Thursday October 5 that I was able to get my pump surgery scheduled for Wednesday Nov. 1. I was so excited and so happy. Even though I’m in the worst pain I’ve ever experienced in my life, I could tell myself 26 more days until the surgery, 25, 24, etc., every time I felt like I couldn’t bear it any longer, and every time I felt sick and sad about how much I can no longer do because of the severity of the pain: shower regularly, have a give and take conversation longer than a half an hour, make a grocery list (because that involves standing up and crouching down to see what we have and then thinking clearly enough to grasp what we’ll need and want to get through the next week).
The spasticity is so severe that I can no longer stay upright for more than a minute or so and my walk has turned into a halting shuffle. Basically, if I double over while shuffling quickly I can still change my cat’s litter and refill her food and water; or I can brush my teeth and wash my face and comb my hair; or I can make myself a dinner of canned chili heated up in the microwave and a turkey and cheese sandwich and carry it to bed.
In the month before my pump trial, I’d already had to give up driving, grocery shopping, running errands, socializing outside my home. Now I’ve given up any real housekeeping, any personal hygiene beyond basic, almost all socializing in my home. Agh. It’s making me so depressed to count all the other ways my life has become so small that I need to stop.
It’s also making me feel like such a terrible failure.
And I feel so selfish because I’d read articles about how the people of Puerto Rico were suffering, and although I felt so much sympathy for them, it never occurred to me that it would affect me personally. And I feel so guilty because now I want so much for them to get power so I can get my pump so I can be out of this pain.
So I feel like a failure because I’m just watching myself lose what activities of daily living I had left, and what quality of life I had left, and I don’t know what to do to stop it. I just can’t manage the pain enough to get back what I had. The only way out that I knew of or know of was the pump.
And I feel like a bad person because all of a sudden I’m monitoring conditions in Puerto Rico because I need the Medtronic factory to function so that University of Michigan hospital can be sent a pump so I can get my surgery not too much later than Wednesday November 1 because I feel like I can no longer bear the severity of my pain and the damage it’s doing to my life and to my sense of self -- and along with that, I can no longer take care of my sweet daughter the way she deserves, or be an equal partner to my sweet husband in any way.
And there are countless people in Puerto Rico with families who are suffering so much more than I am, but I can’t help but think: please oh please make my pump.
Is there anyone else here on the Board who is waiting for a pump because of the Medtronic factory shutdown in Puerto Rico? If so, will you tell me how you’re coping with it, because I am obviously not doing well?
And I would be so grateful to hear from other pumpsters or pumpsters-in-waiting or anyone else who could give me advice or support. I feel so alone – almost like I’m crazy. It’s been 5 days since I found out that my surgery was canceled and I haven’t been able to bring myself to tell my family or my friends because I feel like I’ve become such a burden and am only ever giving them bad news, but I have to start to tell. Please help if you can.
Maggie
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