1. < Neuropathy

It’s okay to say no to your doctors

Posted by julbpat @julbpat, Jul 16, 2023

As I write this, I am trapped in my house for the second day with about 25 EEG electrodes glued to my head and chest. I’m wearing an uncomfortable cross-body strap to hold the recording apparatus. I was told I can’t wear my favorite clothing ( soft tshirts) but only button front shirts. I must stay in front of one of two cameras “at least 85% of the time” by sitting in my recliner, or in bed. No going outside. No exercise. No bathing.
This is an ambulatory EEG to record my new-onset seizures. I have one focal seizure a day, about two hours after I get up. Then I have about 3 hours of recovery, with some dizziness, double vision, and sleepiness. The other 21 hours, there is absolutely nothing to see.
I reluctantly agreed to this, but when they were giving me instructions, and told me 72 hours of recording, I said “oh hell no”. I will record two seizures, then this stuff is coming off my body. We negotiated and agreed on 48 hours to satisfy insurance (guess what - I might become demented and end it myself before then).
My point is, I knew this was going to be a nightmare for me, with my small fiber neuropathy. I have a careful routine that I follow to minimize my daily suffering, both mentally and physically. Having crap glued to me, 25 wires dangling, getting caught on everything, and my functions inhibited - agh. I’m irritated, with a simmering fury at the process, and anxiety, things I rarely experience in my normal life. I have a chronic illness, with chronic pain and disability, and I work hard every day to live my best possible life. It may not make sense to other people, but it makes sense to me, and that’s all that really matters.
My neurologist, who is young and new, is frustrated and puzzled. That’s okay. He will never forget me as one of his first patients, and hopefully he will learn something about the importance to listening to the patient rather than following the strict protocol.
Eight more hours!

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julbpat | @julbpat | Jul 16, 2023
In reply to @lacy2 "Sorry to read what you are going through ... hopefully it will all be "worth it"..." + (show)
@lacy2

Sorry to read what you are going through ... hopefully it will all be "worth it" once completed - I did wonder if which you are at home dong this that you are alone - by yourself ? Agree with you that it's what YOU feel is important .... and hope some here can offer suggestions to get through it all, sympathy and understanding. You are brave to even agree to two days of this ... I have turned down offers of testing that I know I won't cope well with, but this is above and beyond those offers... thoughts are with you.

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I live alone, and am comfortable with the “medical” part of the test. Friends are on standby to be here if needed, and one has been bringing me little treats. I don’t really feel like visiting with anyone. My two sons are group texting with me to keep my spirits up. So yes, I’m physically alone, but have plenty of support. Thanks for caring!

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julbpat | @julbpat | Jul 16, 2023
In reply to @casey1329 "You are amazing to put up with all of that. I really give you a lot..." + (show)
@casey1329

You are amazing to put up with all of that. I really give you a lot of credit for going through with it. I hope you get some good information...good luck !
PS Just noticed the cat...bet it's your best friend...

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I foster kittens for a local rescue, and sadly I had to give my recent kittens to another foster last weekend. It’s just too much, taking care of something else other than myself right now. Just another source of sadness as this chronic illness tries to win!

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olderdiva12345 | @olderdiva12345 | Jul 16, 2023

I am sending up another prayer for you. There should be no reason for you not to watch your church on line. Sounds as though you are a bit down today. Watch something funny or a movie that makes you smile. I have been picking an actress or actor and telling my television to show me what movies they are in. Mona Lisa Smile was a great movie as was Working Girl. Good luck, again, and have a good day.

Judith

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 16, 2023

@julbpat, A picture is worth 1000 words or so they say. I think even your kitty would be saying no to the doctor. I agree with @lagrange5 that it's getting down to the hours and concentrating on the big picture will help you get through this miserable time. Years ago I had to wear a blood pressure monitor 24x7 for a week including going to work at my tech writer job. And every time it took my blood pressure I had to stop what I was doing which was annoying when I was out for a walk. Praying that this too will pass for you.

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1 reply
Lagrange 5 | @lagrange5 | Jul 16, 2023
In reply to @julbpat "Bronwyn has tried very hard to be part of this EEG - wallowing on the wires,..." + (show)
@julbpat

Bronwyn has tried very hard to be part of this EEG - wallowing on the wires, rubbing on the recorder!

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Did you name him or her, and what's the genesis of the name?

I remember when we redid our kitchen. Our dear late furball, Chessie, got up on top of the small ladder. The carpenter called him "the super"{intendent} and kept asking if the work was being done right. Chessie sat up regally with a silent yes.

Humor, even in darkness, can be great.

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1 reply
julbpat | @julbpat | Jul 16, 2023
In reply to @lagrange5 "Did you name him or her, and what's the genesis of the name? I remember when..." + (show)
@lagrange5

Did you name him or her, and what's the genesis of the name?

I remember when we redid our kitchen. Our dear late furball, Chessie, got up on top of the small ladder. The carpenter called him "the super"{intendent} and kept asking if the work was being done right. Chessie sat up regally with a silent yes.

Humor, even in darkness, can be great.

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Bronwyn is a rescue cat (she is actually missing a leg) and I kept the name her foster mother used. My other cat is Viola. I foster kittens, and always enjoy the naming process, even if it only lasts for a little while!

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1 reply
Lagrange 5 | @lagrange5 | Jul 16, 2023
In reply to @johnbishop "@julbpat, A picture is worth 1000 words or so they say. I think even your kitty..." + (show)
@johnbishop

@julbpat, A picture is worth 1000 words or so they say. I think even your kitty would be saying no to the doctor. I agree with @lagrange5 that it's getting down to the hours and concentrating on the big picture will help you get through this miserable time. Years ago I had to wear a blood pressure monitor 24x7 for a week including going to work at my tech writer job. And every time it took my blood pressure I had to stop what I was doing which was annoying when I was out for a walk. Praying that this too will pass for you.

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I had a similar experience with prolonged immobility after major hand surgery. I was attached to an orthopedic polar medical unit to deal with post operative swelling. It wasn't swell. I had to be physically connected to this watery icebox 24/7, and I had to keep searching for my sense of humor. I found out it was there all the time. We all actually have it.

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Lagrange 5 | @lagrange5 | Jul 16, 2023
In reply to @julbpat "Bronwyn is a rescue cat (she is actually missing a leg) and I kept the name..." + (show)
@julbpat

Bronwyn is a rescue cat (she is actually missing a leg) and I kept the name her foster mother used. My other cat is Viola. I foster kittens, and always enjoy the naming process, even if it only lasts for a little while!

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It takes a dedicated nurse to house, foster, and nurture needy felines. When you put goodness out there it can come right back to you, like Bronwyn laying near your head, like a healing friend.

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scolio | @scolio | Jul 16, 2023

I agree with your outlook and I feel your frustration. You are handling this stupid situation as well as humanly possible.

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foxmate57 | @foxmate57 | Jul 16, 2023

Do your best, what ever you can, stay positive. We'll keep you in our prayers. Prayers can move mountains. Best of luck!

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