But y’all deserve at least a bit of an update. I mean, if you’re a friend of mine on Facebook, you may recall that I’ve already reported this. But for anyone who happens to read this and hasn’t otherwise gotten the news...
I did not have my nerve stimulator trial. Nor will I have it, ever.
I know, right? Shocking. This was not my decision. And I found out 2 days before I was to have the procedure that they were cancelling it. Why, you ask? Because I had - I have, I always have - a UTI. And that infection is likely to lead to infection where the leads are placed into the spine. Even if they treat and cure an infection right before the procedure is done, the next imminent infection will cause the same threat of infection in the area of the leads. And so on and so one.
And what makes this all the more maddening is that I told the doctor about my history with UTIs! Back in September when I was theoretically prepping for the procedure to happen in November. He said I would have to get bloodwork and a urine culture done ahead of the trial and he said jokingly, “So don’t get a UTI!” As he waggled his finger at me. Well, I told him, I always have a UTI! Like, literally always. A urologist told me semi recently that if I am ever randomly tested, it will always come back showing infection. It’s just who I am as someone with Spina Bifida. It’s common for us all in this community. Anyway...at the time, he was like, Oh. Well, maybe if we can get your PCP to sign off on this and approve you going forward, we can still do it.
Okay. Good. Okay.
But then here we were in real life and my test comes back showing a “raging” infection and even though my PCP did talk to the doc and try to move things along, he cancelled it. His nurse - the person I’d mostly been talking to these last few months - called to tell me so. And she said he (the doctor) definitely wants to talk to me and will be calling me himself to discuss what other options there are to look at for me. But, for now, he at least wanted her to call and say we’d have to cancel. Not just postpone, mind you. Cancel all together. Because if I’m always likely to have a UTI, there’s always likely to be a threat of infection at the procedure site.
And here we are a couple weeks later, and he hasn’t called me yet. And I don’t expect he ever will. Done. This and all other options with him are done. He told me last June that the “only” option for my relief of pain was this nerve stimulator. So now that’s off the table. No other options with him. I’m not about to call him. I’m sure he won’t call me,
Maddening. Frustrating. Sad. Extremely Disappointing, depressing, and disheartening. Grrrrr....
But! My chiropractor (whom, honestly often makes me angry, herself, in various ways) had suggested something that’s turned out to be useful in the midst of this latest kerfuffle. She suggested I break out my old Canadian crutches (that I hardly ever used and hated so, so much), because they will force me to walk with a different/better posture than I currently do, thus taking pressure off of my back and legs.
Well, I couldn’t find my old crutches, but I ordered some new ones. And they are pretty sleek. And, oh my gosh, do they work! I’m feeling considerably less pain as I walk and, according to Swee and Hubby, I’m zooming around with them like I haven’t zoomed in ages (and unlike the Zooming we’ve all been doing way too much of in this pandemic lifestyle we’ve all gotten used to.) what a relief! Really helpful -more than I ever thought they’d be.
So, there you are. I will not be cancelled! You can try to break me, but I will not be broken! I will always find a way. Get back up, dust myself off, and try try again. Something has got to work. There is always an answer. You just have to wade through a lot of crap, sometimes to get there. Crap and disappointment. Anger and frustration. But sometimes you need a bit of all that to finally push you to find the best answer you could possibly hope for. The best answer for you. Something will work, even when everything else doesn’t. Even when everyone else says no. You’ve just got to say yes yourself. It just takes one yes to get what you need. That’s it.
I’ve found a great answer for me. Maybe someday there will be an even better answer. But for now, this is my yes. This is my relief. This is what I’ve been waiting for this whole time, and I didn’t even know it.
Who cares what I can’t do. I can do this. And it works for me.
I’m back, baby. Zoom zoom...
