The next day

Getting as much done in a day as I can on good days has been my mantra of late. Make shopping lists organized by store. Prioritize errands and organize them by regions of the moderately-sized city in which we live for best travel efficiency. Put Amazon items on my Wish List for bulk orders about twice per month. Put appointments, key things to do/questions to ask at respective appointments, and errands on the calendar app in my phone so I will always have it with me. Record “to do” items on the calendar as well then just move them to another day when sickness takes over and everything needs to change. Make sure to record the places that I went, dates/duration of major convulsive episodes, start/stopping of new treatments, and aberrations in sleep habits to track this serious illness for trending. Use the note function in the glucose meter when compelled to take blood sugar levels. And stage lists, paperwork/medical orders, supplies, lunch bag, water, etc. by the front door so I don’t forget anything when I can finally get myself out the door. Works for me!

It’s no wonder that I am exhausted after a day with a few appointments and errands completed in this way. Marked fatigue with a difficulty functioning follows even if the first appointment isn’t until after 1:00 pm in the afternoon! Still I would really rather block off parts of days and push through, even if it means sitting in a parking lot somewhere resting between destinations for up to an hour, than to have 1 or 2 commitments every single day of the week. I sit a lot in my truck between destinations: eating a snack, sipping some water, checking my lists or phone calendar, and getting my head together (i.e. if the environment I had just left was ridden with noxious environmental stimuli that is still difficult for my brain to process). All of this completed with some safety measures in place of course.

I figure that I can always rest the next day . . . or the next morning at least. Scheduling my days this way is a form of chronic illness survival, especially when you have to come home, change clothes, shower, and clean everything purchased after every trip. (We still must practice a fair level of extreme avoidance due to my ongoing sensitivities.) Perhaps if I were my own occupational therapist, I might advise a better strategy of energy conservation and pacing. Oh dear, another example of the therapist not following her own advice!

All bets are off as they say, the next day, if there is a major convulsive episode the night beforehand. Appointments get cancelled and re-scheduled. To Do List items get moved to another day. A call is made when I can function, to my hubby-dear to pick up critical items when needed. And if the difficulties last for a few days then I am grateful to be able to use our local grocery store’s shopping and/or delivery services. Sometimes supplements and compounded medications can be sent over in the mail. These are wonderful services that really help on days when I am more home-bound: as recent as 2 weeks ago.

Things are really hard when medical appointments fall two days in a row; these meetings are always stressful for me anyways. Things are equally as hard when illness factors worsen around special occasions and holidays: when things simply cannot be rescheduled. This happened today after a wretched convulsive episode last night. I had planned on preparing a meal and some treats for family members who were visiting and it was all I could do to pray my way through the completion of the project. Gratefully my beloved husband was willing to prepare part of it, but sadly after I awkwardly blurted some speech that was a little too pressured, a little too much reflecting the exhaustion I had not yet yielded to the strength of my Lord’s. I had to apologize. Eventually, I got outside in the milder Winter weather of late and for the first time in the three days that I had hoped to do the same. The Pup and I came home then I finished my tasks (’cause there’s always another thing or two to do before you can sit on the couch for a couple of hours and REST!!!).

Probably a few hours too late to be as effective, I did rest. Even the editing volunteer work on the computer got done. And a whole lot of food got consumed while watching cooking shows on Public Television. (We don’t have cable TV.) Such is life in survival mode I guess. The balancing act begins again tomorrow with a family Christmas gathering at a local cafe. It all reminds me of the Capitol One Bank commercial here in the States where the viking character asks his slain comrade or opponent, “what’s in your wallet?” I always hope that it will be fuller on my next day . . . Tomorrow we shall see! JJ

What’s in Your Wallet?

When you search no more

Google and Google Scholar have gotten way too much traffic from me these past 8 years of battling serious illness. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Facebook has been my link to the world outside the comforting yet speechless walls of our home when there were no more folks to call on the phone. A recent relapse in convulsive episodes brings a state of mental fog afterwards. While not a true “post ictal” phase of an epileptic seizure, it is still a time when goal-directed activity (as I used to call it when working in my profession of occupational therapy) simply does not occur. Reading short phrases while lying in a passive state is about the best I can do. Well, except when my beloved is nearby and comforts me dearly. But I follow way too many disease-oriented groups on Facebook so spending time there is not really a break from life, a connection to the living, or even as entertaining as it once was. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Endless planning in my mind or on the calendar on my smart phone has increasingly become a source of frustration rather than relief or even hope. Focusing too much on the future brings tomorrow along too soon, robbing me of the gifts all around me in today. I simply don’t know when-or-if I will be a candidate for parathyroid surgery now that I have a diagnosis that explains so very much of what is wrong with my health. I simply have to wait for others to review my case and call me. Steve and I will adjust our schedules and lives accordingly. It’s time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Gardening has become both a hobby and source of identity when my role as an Occupational Therapist went away. I am grateful that a couple of months of better health in the spring allowed me to largely finish a rain garden project in my community as a Master Gardener. My volunteer work continues as the Assistant Editor of the quarterly publication, Canoe News (of the United States Canoe Association), and Editor of the monthly newsletter, Across the Fence (of the Master Gardeners of Purdue Extension, Allen County). Often these are difficult to get done; somehow with the Lord’s grace we do. But I am struggling to keep up with our own landscape that requires daily maintenance and some brute strength that is tough for me to do these days. The degenerative changes in my spine are not going to go away so what will I/we do about all of those flower and fruit and vegetable beds out there? Keep watering for now, pray about it, and realize that it’s probably time to spend less time there and more time dwelling in the presence of my Lord, Jesus Christ.

And so I shall.

Gee, suddenly I feel less stressed about things. Thank you Jesus. You care about these issues in my life and in those of the Gentle Readers out there too, holding every one in the palm of your hand, the love in your heart, with the promise of your return. Things will work out according to Your Divine plan for our lives. In this we can rest tonight.

And so we shall, eh?

When the adventure is inherent in the day

No fancy definition needed

When the adventure is inherent in the day.

Not exactly a mountain top experience

Or reaching the limits of form and space.

Nor costly in the typical sense of words

For no one wants to spend thousands on health.

Nothing like it in the normal world

But for me it’s no, not, nor, nothing then let’s go anyways.

The effort to live with serious illness

Even when the trials are less to write about

Are no smaller challenge, adventure shall we say

Because you really don’t know the outcome when you head out the door.

There may be pictures (scans), adrenaline rushes (injections) oh my,

Better hold on sissies, cause there ain’t no manual when you decide to try.

And try I have, a thousand times over

To some avail with microscopic progress, not perfection by any means.

Today was no exception as my head swum with radioactive tracer

Driving down the road hungrier, less self-assured, ready to make it anyways.

So what’s in your adventure portal?

The one with an open-ended plan

Make room for the derailments of this life

‘Cause nothin’ better than that Gentle Ones. ‘K Lord, let’s go!

Prayer Request

Gathering medical records and other documents, making travel arrangements that accommodate my sensitivities, and putting together a timeline of the serious illness I have been battling for 8 1/2 years has been an emotional process for me. Just surviving to this day has been a traumatic experience. The blessings are there too yet not as clear right now with the hundreds of sheets of medical records behind me as I type this post.

I have endured so many dead ends and dashed dreams for recovery, physical damage from thousands of convulsive episodes, tens and tens of thousands of out-of-pocket expenses, and so many losses on every front of our lives. One truth is clear that I would not have survived this far without my faith in our Lord, Jesus Christ. He was my Rock when my breathing would not start in the darkness of night or my legs would not move to get me to the bathroom. Both my beloved Steve and my Lord carried me through it all to this moment in time.

Regardless of what has gone before us, Steve and I are pressing forward, hopeful for a good result at an upcoming consultation at the Mayo Clinic. For the first time since the onset of this serious illness, I get to see one of the top Doctors in neuroimmunology at THE top medical facility in the country. That is humbling. I am grateful.

Now is the time to pray for a cure to the daily convulsive episodes. Lord willing, I will be well! Thank you for your love and support, Gentle Reader. Love to you, JJ

God gave me you

Nor ordinary Christmas we had this day

Sleeping in then slowly moving into life out of necessity more than design.

Broccoli for my breakfast and handfuls of granola for my man

Brought us to our traditional reading of Isaiah before revealing our worldly gifts for I and you.

Who paddles a new long board down the hallway

But two middle-aged lovers holding onto our respective gusto of life?

A rest time had to follow for me again

Not as unusual as the waking episodes that have returned changing my hopes for the day.

Perhaps we would visit or do something fun

Yet return to my bed of sickness I did go for a most unfortunate interlude.

When your husband holds you from joy to sorrow

The same day seems surreal: later he feeds you medicine whilst you seize.

Siiiiiigh. Not that old tune returneth even today

For chronic illness ne’er takes a holiday when you want it to my dear.

This did not matter to you: your love never fades

And my greatest gift revealed its beauty the ten thousandth time: it’s you!

I could never conceive of this way that you have

To give beyond your self with a gentle spirit, still manly all the same.

You spoke only of my rest to your family on the phone

Preserving my dignity when I could barely feed myself with fingers weary from the beating moments before.

Yours is a love from the Father, the Son all in One

The kind that sustains you through trials when Jesus comes near with skin on.

He made you for me oh I am the blessed one

I pray he loves you back tenfold for the task of loving me well done today my love.