381. Annoying vs. Sign of Mortal Danger


Karine demonstrates how to relax

Karine demonstrates how to relax

We have reached a new milestone: I went to the doctor alone last week. I saw both my PCP and N2 (my new-ish neurologist) and Mommy dropped me off and I went to my appointments solo. It helped that I go to therapy in the same building so it’s very familiar. But now I’m completely lucid and able to handle things like carrying a purse and wrangling my cards and copay at the appropriate times.

Until now I have required Mom and/or Dad to come with me. At the beginning of my outpatient career it was so one of them could explain what happened bc I wanted to hear them verbalize it. I was alone when I went to the ENT at RIO (3rd hospital) as an inpatient and I think I’ve been scarred for life by that experience. It was the first time I felt pain in the hospital (apart from my dreams) except for when my doctor removed my PEG (food tube). They changed the appointment to early in the morning and my parents didn’t know otherwise they would have been there.

But this time I was happy as a clam on my own. I have been trying to manage some increased eye movements that lead to more dizziness and a greater number of balance checks. I’ve also had more pain in my head – a pain that grabs me around the scar area and is strong and surprising enough to make me flinch but passes so quickly and happens often enough for me to resume a conversation after only a brief pause.

I gave both of my doctors the update on what’s been happening since I’ve been pursing ORFR more aggressively, and since I went to Oregon. They were pleased, and so was I.

356.  I decided

356. I decided

When I told them about the grabby head pain both of them suggested that I could get some injections, e.g. Botox, around the site for relief. I was like, Ummm….no thanks. I’ll get over it. I told N2 that right now I’m kind of like, If everyone could just keep his hands to himself, that would be really great for me.

Fair enough, he responded.

My old rehab doctor once focused in on my stoma (the thing on my neck) as he sat down during an appointment I’d made for something else. He made a hand motion like he was going to touch it and I immediately grasped the bottom of the chair and started dodging him left and right. That was before I’d touched the stoma myself (it took me around 9 months) because I was so grossed out by it.

Later that day I told Mommy that I should probably go get a check up from my Vision Therapy people and also that it is such a blessing to have the option to refuse to get injections. It means that the pain isn’t that bad – I can learn how to manage it, and there is enough wiggle room for me to make a choice. The one thing I made sure to clarify with N2 was that he had no concern that anything was growing in my head that shouldn’t be. Nope. I’m all set.

Woo hoo!! As I told Coach R a couple days later, my instincts were correct (P.S. I love being right.): these aggravated symptoms fall into the category of “annoying” vs. a potential sign of Mortal Danger. I told him this in support of my stance that I have been medically cleared to exert myself as I wish since my old ortho doctor said my joints are sound and my latest MRI is clean.

Mortal Danger happened once for me. It’s almost ancient history now, but it was bad enough to make me, and my family, nervous if new symptoms crop up. But now I’m finally ready to believe that a headache doesn’t automatically signal that the worst is imminent, and to welcome the small annoyances as things that I can learn to live with since they are small enough to allow me the freedom of choice.

102.  The Power of Choice

102. The Power of Choice


2 thoughts on “381. Annoying vs. Sign of Mortal Danger

    • This am I tried to convince my ENT and Speech Therapist they should just take my word for it that I’m better so there’s no need for anyone to look at my cords – they did not buy in to my pitch but at least I have to go less often! PS my cords look pretty good. 🙂

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