Hi, my name is John and I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Thanks for stopping by. To follow this blog, look above this article just to the right of the header and find the three small lines next to the Search button. Click on the lines and then find the blue Follow button and click on that. You're done !
...So you know it’s going to be a Bad Day when you get a letter from your Neurologist’s office stating that your doctor is leaving (no reason or explanation given, of course) and that you need to find another neurologist either from within the small practice or somewhere else. This is with the knowledge that getting an appointment with a neurologist is about as difficult as getting front row seats at a Taylor Swift concert. Not the easiest thing to do.
Like so many other issues we must handle – we have to pivot frequently, deal with unexpected setbacks, and then try to figure things out as quickly as possible. Our health is at stake. And we often have no real information, no hard deadlines, no explanation of the process, or what happens to the current treatment plan and the med orders already in place. So I called right away, hoping for clarity but got only more questions.
Turns out that if I want to get an appointment with any of the very limited number of already established neurologists I won’t be able to get in for a while, a long while. Meaning Summer 2024. Yes. Seriously.
Obviously that’s not soon enough. I don’t have time to waste as my CIDP continues to worsen, my pain continues to spread, my worries continue to grow.
At least, I’m allegedly on the Waitlist for the new doctor but, unfortunately, he won’t be taking appointments for another month or so. Give or take. Nothing definite, of course. At least not yet and no clear answer as to exactly when the Doctor will be In… Patience. That's the answer, right?
It’s hard to feel like you’re always out there on your own advocating for yourself.
But you are. We are. And that’s the way it is. But it’s OK. We’re gonna make it.
I hope you are getting the assessments and answers you need. Don’t lose hope. Keep trying. And thanks for listening.
John
P.S. If you'd like to follow my Life with Neuropathy blog, visit lifewithneuropathy.blogspot.com. Find the three lines next to the search button in the upper right hand corner. Then click follow. You'll be notified of my future blogs.
P.P.S. To read further thoughts about neuropathy, please visit Let's Talk about Mobility, Let's Talk about Speed, or Let's Talk about Changes. You can also read about Tennis Balls and walkers, Saying "Owww" when it hurts, dealing with Pain, or the Humor of finding out your personal walker was a star on the TV show Monk! Finally, if you ever find yourself dropping things like I do, please feel free to read this.
Thanks, hush-naidoo-jade-photography, for the perfect picture. Photo by https://unsplash.com/@hush-naidoo-jade-photography.
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