My Simple Guide For Showing Up — Even With Nightmare Pain
How I participated in and enjoyed multiple, back to back family events
In just three months, I faced 5 milestone family events, a nerve block, and near-daily level 10 pain. Here’s how I still showed up—fully.
I’ve been living with this chronic pain, at different levels of pain over time, for almost 3 years. Every week that goes by, I think, maybe this will be the last week. Maybe this next thing that we’re trying will work. I am constantly optimistic about this situation. Naive? Sucker? Stupid? Anyway you look at it, not finding a solution is not for lack of trying.
I write this blog to show how I live an amazing life despite whatever challenge I’m facing. In my dreams, I’m showing you how to as well.
Let’s take a look at all the events I was able to show up and be present for over the last few months, despite experiencing excruciating pain at some point. Before each event, I gave myself permission to not be perfect—just to be present.
Following these events, I’ll go into more detail about the tools I’ve learned and the treatments — all part of how I was able to still live my life for these events despite being dealt a bad hand of cards.
Event #1 - Sick Dog
Our oldest dog went through kidney failure and more. We tried helping her through it. We spent two months going to extremes: administering subcutaneous fluids almost daily and taking her to specialists.
Ultimately, Minnie didn’t make it. She passed away between Events 2 & 3. The bond that dog and I built over the last 10+ years was tighter than a runway model’s fancy dress. Yet, I needed to be there for my husband and the kids, who all had a deep-rooted, 17+ year relationship with that crazy dog.
This was not a planned family event, like the others on the calendar, but it was one of the most significant events our family experienced together since my husband and I married almost nine years ago.
Event #2 - Graduation
We left for our son’s graduation, not knowing if we would receive a call while in Lawrence that Minnie had passed. I ensured I was present for our son’s architecture master’s graduation at the University of Kansas.
Since I was never able to have kids of my own, I feel honored, proud and humbled to have the opportunity to be a part of milestone life events like this. This family event involved travel to Lawrence, Kansas. We had a 3-day, jam-packed schedule of graduation events — all of which were very exciting and fun.
How could I ensure I am present and not miss any of the varied events?
I’m not sure if it was a mental trick or what happened. But somehow, I made it through this lineup in 90+ degree heat. My pain did not start to kick in until towards the end of the second-to-last event.
Having this opportunity in my life is something I do not want to miss due to a physical constraint. So I didn’t. There’s no doubt that a bit of help from God also played a role, allowing me to participate in these events. And Minnie held on through this occasion.
Event #3 - Alzheimer’s Conference
Three weeks later, I had the opportunity to join other advocates in Washington, D.C., for my annual trip to advocate for Alzheimer’s. This event is so invigorating and inspiring. It's a must-do for me, even though it involves more travel and even further travel. I was to be there for almost a week. Could I keep pulling it off—making it through another high-energy week without my body revolting?
Of the whole week, Capitol Hill Day was the day to prepare for and watch. It is the most exciting day and yet the most physical day. It’s the day when 1,100 advocates from across the country meet with their local senators and congressmen/ women in their DC offices.
For the Illinois delegation, we are scheduled for 5-6 meetings each with a group of 7-8 advocates. The meetings are to tell our Alzheimer’s stories while we ask for more funding for Alzheimer’s reserach and to sign on with the latest ask that the Alzheimer’s Association has developed.
Somehow, I made it through Hill Day, which involves a lot of walking, back and forth to all the reps’ offices, without feeling pain until the last meeting. Thank you, God, for joining us that day as well.
Event #4 - Graduation Party
As if that weren’t enough, just two days after returning from DC, we hosted a graduation party in our backyard for our son for those local to our home area to celebrate with him. I planned the entire party before I left for DC. It was ready for execution, but would I be able to make it through the actual day of the party?
Would the pain knock me out before the guests even arrived? Would I forget something basic like plates or drinks? Was I insane to host a backyard party two days after flying home from DC?
I almost canceled twice. Not because I didn’t want to celebrate my son, but because I didn’t know if I could stand through it. Literally.
Fifty-ish people RSVP’d and fifty-ish people showed up. My pain cooperated most of the day, but at a certain point, I finally had to concede to the pain and get off my feet—— and on to an ice pack.
Sitting on the ice pack, I was able to enjoy myself and have fun at a party that I was hosting. That doesn’t always happen when I’m in host mode, quietly measuring my worth in how smoothly everything runs.
Event #5 - Move to Omaha
I barely had time to recover. This time, I had 1 1/2 weeks before our next milestone event: moving our son to Omaha, where he will start his first job after graduating as an architect. Another exciting life event that I was determined not to miss. I was given strict orders by my physical therapist to do no lifting. But there is still a role for organizer, food planner and cheerleader.
This was a significant move, considering it is truly his first adult life experience. Which will be his new grocery store? What will be his go-to breakfast spot on the weekends?
I opted out one day. I stayed back on Thursday, so I missed loading up his school apartment, but I certainly was there for the unloading on Friday in Omaha. I had the very important job of making sure the contents of the truck were safe as load after load was taken up to his new apartment.
What could possibly be next?
These 5 events, spanning from April to June, were all very significant and meaningful. Wouldn’t it be nice if such important events could be spread out over a longer period of time? It would give us the opportunity to truly internalize and appreciate the events to their fullest potential.
As I wrote about in my last newsletter, and after a major flare-up of pain, I pushed my doctor hard to get a nerve block. Knowing the line-up of events coming in my life, I knew I would need something with a big kick to get me through it all, besides having a hopefully powerful tool for life.
Event #2.5 - Nerve Block
The nerve block injection took place at the Mayo Clinic the day before I left for Washington, DC (Event #3). I was sure that once I got a nerve block done, that would be the solution that would tip the scale and relieve the pain.
Three weeks after the nerve block, the results are sketchy. I’m having a hard time evaluating the results due to a messy side effect. I do believe that the pain would have been worse, for example, on Capitol Hill Day in DC, but I’ve had a lot of days exactly the same as before: high levels of pain requiring reactive actions to try to reduce the pain. As of now, the jury is still out on the nerve block.
Tools that I use to help with the pain
I survived each of these back-to-back events with my toolbox, which I am now sharing with you. Here’s what I relied on—my go-to tools, refined through trial, error, and necessity:
Distractions - I find an activity that I get so absorbed in that I forget about the pain. Often, after a certain amount of time engaging in the activity, the pain will be reduced or sometimes disappear. For me, some of these activities are puzzles, painting and reading.
Mindfulness - I have not succeeded yet at regular meditation; however, here are some mindfulness tactics that do help:
Music - I lean into faith-based music to feel God’s presence. While I still don’t understand why God would let this pain invade my life so much, I also know there is a plan greater than me that I don’t know.
Gratitude - I write down 3 things I’m grateful for each day.
Cognitive Therapy Approach - Acknowledge my pain. Notice how I feel in the moment. Recognize that I am safe. I am ok.
Diaphragmatic Breathing - Inhale deeply for a count of 4. Feel belly expand. Hold breath for 7. Breath out for 8.
Set phone timers - To ensure I take my meds on time, both pills and the powder mix that improves the consistency of my stool. Some of my meds need to be taken in a specific:
Sequence.
Amount of time before/after eating.
Amount of time before/after taking any other pills.
Since my days do not always start at the exact same time, I revisit the timing for the phone timers each day.
Sleep - If I don’t get a minimum of 7 hours of sleep, I will have a high-pain day.
Moderation - While I remain active with meaningful family and personal activities, I also say no to many things and proceed with caution in the activities I do.
I need to preserve what I’m capable of to ensure I can show up at the right times.
Regular stretching - Either at strategic times prior to events or as a reactive response to pain. My PT has prescribed specific stretches based on my condition.
Ice - When needed, 10-20 minutes.
Epsom salt baths - I have an article about Epsom salt baths on my homepage. Reducing inflammation is one of the many benefits of these baths. This is a tried-and-true, time-tested tactic. My article on this topic (linked here) includes some how-to tips.
Be aware that none of these tools works by itself. It takes a combination of some of these, sometimes many of these, to move the pain needle.
I was somehow able to survive April through June. It was not perfect. In fact, it was quite imperfect. But I survived. I showed up. I was an engaged and present member of my family and I represented my family (DC).
While this is not the life I planned (a pain-filled one), I am still striving to be a part of it. In parallel, I am working on longer-term solutions as I don’t plan to live like this forever. Success used to mean hosting the perfect party. Now, it means being there—even if I’m on an ice pack.
I hope that my toolbox can help you navigate whatever you are going through. Drop a comment or a note if any of these tools resonate or if you have any other ideas.
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I would not have known you were in any pain at all at the party we attended. You are a wonderful, thorough, and gracious host.
I, too, enjoy Epsom salt baths. I recently read some information about the difference between Epsom salts and magnesium flakes. Have you looked into this at all? I bought a bag of flakes to try instead. Supposedly, the form of magnesium used for flakes is more easily absorbed? Just curious if you have any thoughts or knowledge on that?
Stretching benefits my ankylosing spondylitis, too. I have a few yoga poses I try to do nightly.
Praying for you to find that golden ticket (or combination) to living with minimal pain, my friend.