Telling the Truth

connecting the dots of my life

Tag: Peripheral Neuropathy

Falling in love with today

How soft and easy
the pillow of yesterday
when heart, mind and body
were young and strong
filled with adventure

When did the lie creep in?
The lie that weak isn’t strong
or even beautiful in its
softening and yearning for
more time on this precious earth

Peering into the rear-view mirror
of life as I’ve known it has become
a daily gift to myself and to those
I loved and let go along the way
while holding them in my heart

I’m painfully aware that my energy for blogging has plummeted in the past several months. Not because I don’t want to show up, but because I’m still coming to terms with the ups and downs of nondiabetic peripheral neuropathy.

At the top of my daily list have been painful feet plus awkwardness when walking. A close second has been keeping pots of soup or stew ready to eat, along with cut-up veggies ready to eat raw or steamed. In addition, the weather is warming up nicely, the birds fight daily at our two birdfeeders, Smudge loves my lap, and I’m learning to walk outside with my handy-dandy hiking pole.

Bottom line: I’m learning to treat my feet as part of me—not as my enemies. They aren’t going away, and even if I live to be 100 years old, I can’t thank them enough for taking me places I never dreamed I would go. So yes, we’re on the same side now. No more glowering looks or worse. Instead, I’m learning to listen to them, thank them for letting me know enough is enough, and give them and myself the break we deserve.

I pray your day includes giving yourself the breaks you need and deserve.
Cheers from Elouise

© Elouise Renich Fraser, 18 May 2022
Photo from eventbrite.jpg

Good News and three choice photos

Good News! I am not a candidate for the health challenge no one wants to face: hypogammaglobulinemia.

So I’m back to floor exercises to help ease pain in my legs and feet, walking, playing the piano, writing, resting as needed, and eating mostly vegan food on behalf of my heart and kidneys. Peripheral neuropathy and osteoarthritis in my lower spine are more than enough for now. That, plus the reality that the end of my life keeps approaching, one day and night after another.

Just for fun, above and below are three recent photos of Christmas cheer and Smudge. D took the photo at the top; I took the rest with my iPad. Am I besotted with Smudge? Yes, indeed! Especially when he’s behaving well.

Checking out the Costco box

Drowsy on our heated waterbed

Cheers to each of you!
Elouise

© Elouise Renich Fraser, 2 February 2022
Top photo taken by DAFraser; photos of Smudge taken by ERFraser

One day at a time

This morning I opened my email to find Elizabeth Elliot’s quote above, sent by a friend of many years. It wasn’t all prettied up with a photo. It was, however, precisely on time.

For about a year now I’ve been living with part of my eye and mind on the present, and the rest, especially my emotions, on the future. Not a bright future, but dread of what my body was trying to tell me about my health.

Last summer my integrative doctor recognized my symptoms, and immediately referred me to a neurologist. I imagined getting an appointment quickly. That wasn’t the way it worked out, so I had a good month and a half to continue living in the future.

Fast forward to yesterday and the post about my health. No more than two hours after I hit ‘publish’ I got a call saying the upcoming appointment with my hematologist had to be changed. I was blown away. Waiting just one more week felt like the last straw.

I’ve been a ‘one day at a time’ woman since my 40s. Yet in the midst of difficult life-changing realities, I quickly capitulate to what might happen tomorrow or next month. I don’t blame myself for this. I do, however, realize yet again how difficult it is to live ‘one day at a time.’ Especially when there’s so much going on in our aging bodies and souls that needs attention.

The temperature last night was frigid. I slept fairly well, all things considered. Today the sun is out, and I’m looking forward to the rest of this day for which I am responsible. As Elizabeth Elliot puts it, “God still owns tomorrow.” It will come soon enough.

Thanks again for stopping by!
Elouise

© Elouise Renich Fraser, 22 January 2022
Elizabeth Elliot quote found at quotefancy.com

In the deep mid-winter | 3 Haikus

buzzing ears open
for business this frigid day
listening to nothing

wind howls
through cracked walls
a baby cries

travelers
missing in action
full stop

Real Winter. We haven’t had it here in Eastern Pennsylvania for several years. Now it seems to be making up for lost time.

This morning I set things up to make a big pot of spiced red lentil soup. I also used my SAD ‘happy light’ to help with my mood. Best of all, I decided not to race out early this morning (with D driving) for a blood draw before 9am.

Not a bad beginning to what promises to be a gusty, sun-shiny day, with the temperature plummeting tonight. Not many birds were out for their early morning suet feast.

Beginning this week, I’ll see three of my doctors, one a week, to find out what my blood tests, MRI, and other tests to my feet and legs are adding up to.

In the meantime, I’m finding out when my feet don’t hurt. It’s all about music! Playing the piano instantly takes my mind off the pain. So does walking in the house or working in the kitchen with my new headphones, listening to direct-feed music, babbling brooks and birds, or anything else remotely musical. Thanks to our daughter and her husband for the birthday headphones.

Best of all, I have no pain when I’m sitting at my computer writing poetry or posts for you.

Until next time, I’m still
Elouise

© Elouise Renich Fraser, 10 January 2022
Photo found at houstonchronicle.com

My Great MRI Adventure | New Year’s Eve 2021

In knee-high socks
And ortho shoes she trips
The light fantastic

Light as a feather
Music spins through soft earphones
To another world

Silencing all noise
Beauty fills every fiber
Of her weary soul

I’m lying on a long, narrow table. A long capsule slides almost silently over my body.

I’ve been up since early in the morning. D is sitting in the waiting room. I’ve been told more than once that the MRI will take 15-20 minutes. My name is called. I’m ushered into a small room with a closet. I answer a barrage of questions I already answered online and in the waiting room. The woman helping me is kind.

She tells me how to put on the two gowns lying on the bench, and where to lock my clothing and belongings. The only things I’m allowed to wear are my knee-high socks and one other piece of clothing I will not name.

I emerge draped in two huge gowns.

I’m directed to a barber-shop like chair obviously made for people larger than I. I can’t lean back or touch the floor with my feet. I sit up straight and hold still while the pacemaker team disengages Lucy Pacemaker and makes sure they can monitor my heartbeat/arrhythmia while I’m having the MRI. This takes at least 20 minutes. I’m happy to say that everyone who worked with me treated me as the Queen I am, for which I was most grateful!

Finally, I’m escort by a female nurse to the MRI room. The male technician who will be in the room with me the entire time has me change my anti-Covid mask for their mask (not as nice as mine). He also has me leave my changing room key on the table. The nurse and technician help me onto a very narrow table.

As fast as lightning, the technician inserts ear plugs, adjusts my head, puts a large cushion beneath my legs and knees, glues and tapes stuff onto my chest to monitor my heartbeat, puts a finger clip on my right thumb, and a rubber ball in my left hand. I’m to squeeze it if, at any point, I’m not comfortable. If I squeeze it for any reason, the MRI will be terminated and rescheduled.

Finally, sheets are pulled up; my feet are positioned just right and strapped down so they won’t fall off the narrow table. The technician assures me that he’ll be in the room the entire time, ready to help me. Then he disappears somewhere behind my head, and the capsule starts sliding over my body. I decided early on to keep my eyes closed and practice relaxation breathing. I was not prepared for either the noise or the heat.

Nor was I prepared for the cacophony of diverse sounds that bounced around me. Sometimes there were lengthy pauses; sometimes only a few sounds. Other times it was like being caught in crossfire that didn’t want to end. I wasn’t prepared for this strange mixture that had no rhyme or reason.

However, somewhere along the way I thought about drum beats I’d heard when D and I were on sabbatical in Kenya. Instead of angst, I had a bit of curiosity and interest, though I was still shocked by the diversity and clamor of this strange machine.

Suddenly it was done. The young man and my nurse helped me back to my barber-shop chair. The nurse handed me a bottle of water which I drained to the last drop. Lucy Pacemaker was returned to being in charge of my heart. I couldn’t wait to get out of there and have D drive me home.

Thanks for visiting today! For 2022, I pray you and I will grow as truthtellers, no matter how difficult or dangerous it becomes.

Happy New Year!
Elouise

© Elouise Renich Fraser, 31 December 2021
Image found at wfmt.com

choices I don’t want to make

If you had gently hinted
just one short year ago
that today would find me
lost and bereft
I might have laughed

On the other hand….

To say my situation is
better than so-and-so’s
misses the point altogether
while denying reality
screaming in my feet

How to live with this
malfunction on the outside
and agony on the inside
challenges my educational
upbringing and experience

Daily and nightly reminders
pile on unavoidable witness
to the slow decay of this body
still struggling each day with
choices I don’t want to make

I haven’t posted regularly for what feels like an eternity. Actually, it feels like hanging in midair, waiting to find out how this will play out. Peripheral Neuropathy. My new ‘friend’, though I still don’t know the full picture. The day after Thanksgiving I’ll have an MRI with the hope that my neurologist will learn something new or at least helpful.

My focus today is on what I enjoy doing. Unfortunately, my feet like to remind me of what I don’t enjoy. Nonetheless, my new curriculum is interesting. Bottom line: What would I like to do right now? What brings me joy, so that I don’t even notice what my feet feel? (For example: looking at David’s Longwood Garden Photos; playing the piano, riding my indoor bike.)

In addition to two books I mentioned in an earlier post, I’m also reading a book by Mims Cushing (who lives with this disease) and Norman Latov, MD, her neurologist. Title: You Can Cope with Peripheral Neuropathy: 365 Tips for living a full life. It’s a bit dated, but the self-help pointers are ageless.

Bottom line: I feel myself becoming a ‘different’ person–not so driven, more laid back, grateful for small gifts of each day and for you.

Elouise

© Elouise Renich Fraser, 23 November 2021
Photo taken by DAFraser at Longwood Gardens, December 2015

Getting on with life

Though I haven’t fallen down the stairs, or tripped on my own feet, I haven’t figured out how to get up again and proceed with life.

Mary Oliver has a short poem in A Thousand Mornings (2012, p. 9) that says it all.

After I Fall Down the Stairs
At the Golden Temple

For a while I could not remember some word
I was in need of,
and I was bereaved and said: where are you,
beloved friend?

My biggest fear right now is that I’ll fall down: Where are you, beloved feet?

It’s official: I have peripheral neuropathy. It’s in early stages, though given the fire and pain in my feet and legs, you could fool me. My doctor has ordered an MRI scan. I’ve never had one. I don’t want one now. And yes, I’ll have it.

Last Friday I had two diagnostic tests in the office. Together, they took about an hour. The first (scroll down in this link) (NCS) was supposed to be the easiest. Electrodes on my feet and legs were prompted to shock me. Sometimes my responses were minimal—or even nothing at all. However, most of the time (a good thing) the shocks were just that. Horrific. I thought they would never end.

So…moving on to the second test (EMG). It was supposed to be the most difficult. The doctor inserted thin needles into my legs and feet, prompting me to use or flex various muscles while he listened for noise. Then he did one more poke in my lower spine. The needle pokes weren’t fun, but they were nothing compared to the shock tests. In the end these results were also mixed. Another sign that this disease is in early stages.

I was surprised that my problem most likely began in my lower spine, not in my feet or legs. The MRI will help clarify what’s going on.

In the meantime, my feet are a mixed blessing. I’m grateful to be sleeping well most of the time. The best exercise these days is a walk outside with D or riding my indoor bike. My feet smile and even tear up a bit when I’m playing the piano or working at my computer. Yet when I’m working in the kitchen or around the house, they scream at me for mercy. Especially in the afternoon and evening.

If you’re interested in knowing more about this disease that shows up in various forms, I’ve found these two books helpful:

Thank you for your prayers and good wishes! The photo at the top is one of my Longwood Garden favorites–posted today just because.
Elouise

© Elouise Renich Fraser, 24 Oct 2021
Photo taken by DAFraser in October 2019 at Longwood Gardens

Life disrupted

Taken the day before our 56th wedding anniversary in
the Longwood Gardens Conservatory

Life’s disruptions don’t
Knock politely at the door
No matter the time of day
Or night

How quickly
Things change or
So it seems
Though looking back
The signs were screaming
At me in early warnings
Burning through thick
Clouds of denial
And my belief that this
Couldn’t be happening
To me

I know what it is. I won’t know for over a month the extent of damage already done to my feet and legs. My kind, knowledgeable physician’s assistant will need to poke my feet and legs with needles, among other things. That happens in late October.

Still, I know what this intruder is. It’s already reshaping my life, though I’m not ‘officially’ a candidate for this plague. Peripheral Neuropathy. Fancy words for burning feet and all that goes with it.

Most difficult right now is learning (by hit and miss) how much I can walk or stand on my feet before they scream for mercy. I’m grateful for orthopedic sandals that help ease the pain, though even they can’t make the pain go away. I’m learning the hard way to sit as often as needed, and walk as often as feasible.

This morning I returned to an old discipline that helps me stay centered when things are tough: three pages of nonstop writing. Whatever pops into my mind, no matter what kind of language it requires! I highly recommend it.

Thanks for stopping by, and for being part of my life. The photo at the top is to let you know I haven’t forgotten the promised Longwood Gardens post!
Elouise

© Elouise Renich Fraser, 22 September 2021
Photo taken by DAFraser in the Longwood Gardens Conservatory, 10 September 2021

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