It must be a flare-up, my Mayo doctor told me two weeks ago. Just keep doing the things that feel good.
At the time, I agreed with her recommendation. Since then, I have a new perspective: Let’s stop living with status quo and take more extreme measures.
After re-reviewing Mayo’s original recommendations (from back in October), I was reminded of what to try if the original recommendations don’t work. I want to do a nerve block. I understand that it may or may not work. I’m ready to try new things and take drastic measures. I’ve been patient enough trying all the things. It’s time to move to the next level.
You’ve Got Nerve
I talked with my physical therapist about which nerve we would block. Quick to say that she would not be the person to identify it (it would be the pain specialist doing the nerve block), while at the same time, she was doing treatment, Yow, I called out. That’s it — that’s the nerve, she said.
I question how someone else will find the right nerve(s) like she is doing organically. I captured the name of the nervy culprit. There are 3 branches of the nerves involved, so it’s still not straightforward.
A nerve block feels like a test. Maybe it will work and maybe it won’t. Maybe we’ll get the right nerve and maybe we won’t. Maybe I’ll feel relief from this nightmare pain and maybe I won’t. Maybe, maybe, maybe.
Time to Make Some Changes
During this period of intense pain relapse, I’m leaning into self-care. I re-instituted Epsom salt baths into my plan and I’ve made a big decision about eliminating some of my volunteer activities. I need more breathing room, literally and figuratively.
I wrote an article Won Epsom salt baths to give you all the necessary info, including benefits and how-tos. For your detoxification and relaxation, check it out via the Epsom salt bath links here.
Hanging over my head has been developing a fundraiser in honor of my mother for the benefit of the Alzheimer’s Association. As I dig into my past more, to discover this blocked-from-my-mind trauma, I have uncomfortable feelings about doing a fundraiser in honor of my mom. I can’t reconcile feelings vs fundraiser right now.
My purpose vs the greater purpose
I still love my (deceased) mother and love so many things about her. And I know in my heart she only acted the way she did because of her learned behaviors from her upbringing.
I know the fundraising will benefit the Alzheimer’s Association and help us achieve the greater goal of finding a cure.
All that said, knowing that I also need some relief from excess commitments right now, this feels like the logical choice to step down from.
I’m Not Letting Go Completely
I will continue my advocacy volunteer role with the Alzheimer’s Association. I will still:
Meet directly with elected political leaders in the community to encourage them to vote for Alzheimer’s initiatives by telling my Alzheimer’s story.
Go to Washington, DC once a year to a conference organized by the Alzheimer’s Association.
Receive local assignments throughout the year, like posting tweets on social media weekly, writing letters to the editor for my local community paper and collecting signatures to show our members of Congress that their constituents care about these Alzheimer’s initiatives.
It’s important to me that my pain not take away every single thing that I identify with myself today. Knowing I can still do this role is an integral part of making this decision.
Pain Patterns That Are Part of the Takeover
The takeover is of me. The pain has taken me over. The pain has four particular patterns in my life right now.
Pattern #1
The pain gets over the top bad as soon as I get into bed at night. I can’t explain this one yet. I’ve added to the agenda to discuss with my therapist this week. More to come.
Pattern #2
The pain gets more and more difficult as the day goes on. I typically keep a pretty healthy line-up of evening activities, between connecting with friends and meetings at church. All of my evening activities were cancelled for the last 2 weeks due to my pain.
Pattern #3
Taking a shower increases the pain. This one is hard to explain and may get a little too nitty gritty for my average reader, so let’s just table this one as is for this writing.
Pattern #4
There is no pattern. The pain can randomly show up at any time during the day without explanation or reason.
These patterns show no escape from the pain throughout the day. It hurts to walk, sit, bend down, or do just about anything. Hopefully, the flare-up will clear soon!
The Thief Called Pain
Speaking of the pain, it has taken over my life. I feel like I’m losing who I am and having a say in what I can do. I am also starting to get pissed off.
The pain is a thief who takes things away from me. Most notable is time. Also money. And also, it takes away my emotional freedom. And it takes my ability to engage socially.
It steals. It steals my quality of life.
I’m ready to fight back against the pain. Let’s no longer take the pain’s word for it. We will hit it hard with whatever tools and options we have.
THIS is why I’m looking for a nerve block. I’m looking for quick hits and options that can rule out other options.
The nerve block can still be hit or miss. If it doesn’t work, that would mean we just might have hit the wrong nerve. Maybe it’s a different nerve, or nerve branch, instead.
In the words of the great Maya Angelou:
You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.
I can’t move forward without trying something different.
Prioritizing Self-Care
In summary, one of the self-care levers that I’m going to pull is stepping down from my fundraising and community engagement role. The most considerable relief this gives me is that I won’t be planning a fundraiser this year.
I also won’t be looking to engage small local businesses in the Alzheimer’s Walk and I won’t be running the Family Fun Zone booth at the Walk this year. There are fun parts of this commitment that I’m going to miss. And that made this decision even harder. But in the end, I need to do this so that I have less activities and less commitments that people are counting on me to complete. Less, less, less of everything.
Stage Your Own Takeover
It’s time for me to stage a takeover of the pain. It’s pushed me to a new limit where I’m throwing up a roadblock. Pain - you piss me off and I’ll show you a thing or two.
I’ll continue to pursue the nerve block or something else new. I’ll give myself the freedom to prioritize self-care. Stepping down from my Alzheimer’s volunteer commitment makes more space for taking care of myself while eliminating excess stress.
I’ll take more Epsom salt baths, have more time for writing and activities I enjoy that don’t add stress.
And I hope I inspire you to stage your own takeover, whatever that may be for your situation in your life.
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You are so brave, my friend!! Thank you for this beautiful post and your beautiful journey. Your soul is inspiring!
Aw, thank you so much for this! It has been amazing to meet you on this journey.