The end of the countdown has begun. I'm 2-1/2 weeks away from my next epidural.
These are usually my worst weeks. I am beginning to feel the worsening, which is disappointing.
However, comparatively speaking thus far, I am still much improved from this time last year, and even since this time last round.
Yesterday as I sat in a lounge chair sky-watching, clouds moving along their shape-shifting journey, I wondered, Where are the dead people? Something I wonder about from time-to-time. Is there life beyond this one?
I don't have a definitive answer. No one does. We all have beliefs and hopes about what lies beyond. Some have near-death experiences or experiences with those already deceased. But there are still no hard facts; at least that have convinced me.
Yesterday I turned 57 years old. It was a good birthday.
I spent most of my birthday with one of my pet-client dogs who stays in our home regularly. He went blind in the past few months. The blindness isn't due to age, but rather, a disease for which there is no cure. So he and I have been learning together.
Earlier this week, as he sat beside me in the passenger seat strapped in with his doggie-seatbelt and I in the driver's seat strapped in with my human-seatbelt and singing out loud along with a song that has inspired me the past few years as I've learned to accept but not-be-defeated-by my own disability, I sang for my dog-friend too. I included his name along with mine in whatever-song-it-was. I then told him with a smile and a tear, "We're disabled comrades....abled-differently comrades...That's us!"
We then proceeded to Pilot Mountain for a short hike. Beneath his feet, he got to feel the trail, and even some roots, and walk on flat rocks.
It was a beautiful, breezy day. He took in as many scents as possible. At one overlook, he stood with his face to the sun and a gentle mountain breeze. He seemed in total bliss.
I certainly was.
More good memories for the bank....
April 28, 2016
April 20, 2016
Breathe...
In the past few years, I've grown more and more enamored with nature and the earth. It's a different feeling than I have toward the heavens, meaning beyond the sky in outer space. Similar would hold true for the oceans.
I will most likely never scuba dive. Or if I do, diving would not be an ongoing, physical, tangible relationship. I'm not a big water-person.
I doubt I'll ever take a civilian trip to outer space, unless that becomes common before I die. But like diving, there would be no ongoing, physical, tangible relationship. Like with water, I'm not big into flying. Though I could be, if I had the funds.
But the earth. The earth. We are together every day. Without her, I couldn't exist. (I couldn't exist without the oceans or space either.)
It's not that I am not in awe of the oceans and heavens. I love them too. But I don't have the love affair with them that I have with the earth, earth being the dirt and all the life it creates and provides. We are together daily. There are times she cradles me, and I am soothed.
Yesterday...as I sat in the shade of a tree on small, grassy hill keeping an eye on a little Yorkie puppy while she sniffed and frolicked; feeling the breezes blow through the leaves and limbs of the surrounding trees; watching birds flutter about chirping one to another; witnessing squirrels scamper and springtime come to life before my eyes in all its array and vast variety with hues of green, patches of clover, wild flowers, and bees a buzzing...I thought, What a horror it would be to have to stay indoors all the time. To see only walls and fluorescent lights and electronic screens.
And then I thought of a prisoner in solitary confinement, with only a small portal for light way up high in a cement block cell. I can't think of a worse torture. So much darkness. I guess prisoners get let out for 30 minutes a day in a small, fenced area, in the more humane prisons. And what of terrorists' prison cells? There's probably no outside time, or only enough to keep the prisoner breathing, to put him back in the hell-hole.
My thoughts meandered to stories I'd heard or read or seen in movies, about prisoners of war, Holocaust survivors, prisoners who survive solitary confinement in the US prison system, kidnap victims...
At times, I look around me and, to the best of my ability, imagine if a bomb were to hit...all this beauty would be ash. In the cities, rubble would be everywhere. Stacks and stacks of rubble. Rubble strewn in the streets. Rubble and ash and stench. Some people live with that every day. Some have known no differently.
My life is good. A reality I am continually aware of...
I will most likely never scuba dive. Or if I do, diving would not be an ongoing, physical, tangible relationship. I'm not a big water-person.
I doubt I'll ever take a civilian trip to outer space, unless that becomes common before I die. But like diving, there would be no ongoing, physical, tangible relationship. Like with water, I'm not big into flying. Though I could be, if I had the funds.
But the earth. The earth. We are together every day. Without her, I couldn't exist. (I couldn't exist without the oceans or space either.)
It's not that I am not in awe of the oceans and heavens. I love them too. But I don't have the love affair with them that I have with the earth, earth being the dirt and all the life it creates and provides. We are together daily. There are times she cradles me, and I am soothed.
Yesterday...as I sat in the shade of a tree on small, grassy hill keeping an eye on a little Yorkie puppy while she sniffed and frolicked; feeling the breezes blow through the leaves and limbs of the surrounding trees; watching birds flutter about chirping one to another; witnessing squirrels scamper and springtime come to life before my eyes in all its array and vast variety with hues of green, patches of clover, wild flowers, and bees a buzzing...I thought, What a horror it would be to have to stay indoors all the time. To see only walls and fluorescent lights and electronic screens.
And then I thought of a prisoner in solitary confinement, with only a small portal for light way up high in a cement block cell. I can't think of a worse torture. So much darkness. I guess prisoners get let out for 30 minutes a day in a small, fenced area, in the more humane prisons. And what of terrorists' prison cells? There's probably no outside time, or only enough to keep the prisoner breathing, to put him back in the hell-hole.
My thoughts meandered to stories I'd heard or read or seen in movies, about prisoners of war, Holocaust survivors, prisoners who survive solitary confinement in the US prison system, kidnap victims...
At times, I look around me and, to the best of my ability, imagine if a bomb were to hit...all this beauty would be ash. In the cities, rubble would be everywhere. Stacks and stacks of rubble. Rubble strewn in the streets. Rubble and ash and stench. Some people live with that every day. Some have known no differently.
My life is good. A reality I am continually aware of...
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| Olivia along New River Trail heading south, 4/13/16 |
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| New River Trail heading north, 4/13/16 |
April 19, 2016
Sometimes I miss...
...having the energy to pen more creative, free-flow writing.
...and then playing with it, much like a drawing or painting that an artist works with over time.
But, I am putting energy elsewhere.
...and, most often, I put that energy into activities that enhance my life.
...activities that add magic and awe.
...that energize, when I can be energized.
...that allow serendipities and increase gratitude and imbue a deep respect for life and its seasons.
My biking goal for 2016 is 1500 miles.
Oh my...I just had a thought.
Maybe I'll go for 2016 in 2016!
1500 miles comes out to an average of 125 miles/month.
2016 miles averages 168 per month.
I wonder if I can do that? Hmmmm....
For the first 3 months in 2016, I rode
...January = 155.8 miles
...February = 67.5 miles
...March = 179.5 miles
That comes to an average of 134.3 miles per month thus far in 2016.
.
So, I'd have to average around 180 per month for the next 9 months, to get to 2016 miles.
I don't know if I can do that.
For now, I'll stick with the 1500-mile goal.
My longest ride at one time has been 26 miles.
I rode that on Wednesday, 4/13/2016 along the New River Trail in Virginia.
Thirteen miles one way, and thirteen miles back.
'Twas a magical day, adding to my feel-good-memories file.
New River Trail State Park
...and then playing with it, much like a drawing or painting that an artist works with over time.
But, I am putting energy elsewhere.
...and, most often, I put that energy into activities that enhance my life.
...activities that add magic and awe.
...that energize, when I can be energized.
...that allow serendipities and increase gratitude and imbue a deep respect for life and its seasons.
My biking goal for 2016 is 1500 miles.
Oh my...I just had a thought.
Maybe I'll go for 2016 in 2016!
1500 miles comes out to an average of 125 miles/month.
2016 miles averages 168 per month.
I wonder if I can do that? Hmmmm....
For the first 3 months in 2016, I rode
...January = 155.8 miles
...February = 67.5 miles
...March = 179.5 miles
That comes to an average of 134.3 miles per month thus far in 2016.
.
So, I'd have to average around 180 per month for the next 9 months, to get to 2016 miles.
I don't know if I can do that.
For now, I'll stick with the 1500-mile goal.
My longest ride at one time has been 26 miles.
I rode that on Wednesday, 4/13/2016 along the New River Trail in Virginia.
Thirteen miles one way, and thirteen miles back.
'Twas a magical day, adding to my feel-good-memories file.
New River Trail State Park
April 18, 2016
Rock the boat...don't rock the boat baby...
[Note: This piece contains language that some may find offensive.]
***
This morning, as I moved my body and arms through the Synergetics motions, hopeful tears streamed down my cheeks.
Oh my gosh. Is it really real? Do I have my arms back?
Don't think that way yet Carol. You still have 4 more weeks until your next epidural.
Yes, but, I think they are back! I've not upped my steroids and I'm almost at Post-week 8.
Just hang on and wait and see what happens over the next 4 weeks.
A couple hours later, as I noticed how 'normal' my arms felt, it hit again.
Oh my fucking god. Oh my fucking god.
Is the nightmare over? What if it's over?
Oh my god. What if it's over?
Again, hopeful tears streamed down my cheeks, as they are at this moment while I type.
Memory upon memory flowed through my mind recalling this nightmare and the unforgiving, relentless, tenacity of this disease as it has spread through my body.
And it has been relentless.
***
Saturday, April 2, 2016.
My cell phone alarm sounds at 7:00 AM. I sit up on the edge of the bed and then stand up and then take a step to get to my phone and turn it off. Simultaneously, the room begins to rock like a boat. I flex my leg muscles to stabilize my stance and maintain balance. I manage to slide my finger across my cell phone screen and silence the alarm and then immediately sit down.
Fuck. Fuck. Fuck.
I lay back down to see if the room rocks again. And it does. I close my eyes and clinch the sheets with my hands to hold on until the rocking stops.
Then I lay still, on my back, in the dark, in the quiet.
God. I was hoping symptoms wouldn't spread this round. My arms have been doing so much better the past couple weeks. But it's Post-week 5-1/2. If the nerve damage spreads, it usually does so between Weeks 4 and 6 and again between Weeks 10 and 12.
I breathe deeply and then slowly rise to a sitting position. And I count. The rocking begins around the count of 10.
I close my eyes, and with both hands I clinch the side of the mattress for balance. I count again. The rocking ceases at around the count of 7.
The same happens when I stand.
Then I am pretty much okay to walk.
This pattern of wooziness is continuing, and has morphed a bit along the way. It's not gotten worse. And I have adapted. I can still drive and ride my bike. I would be devastated if I couldn't ride my bike.
I was quite depressed on Sunday, 4/03, the day after the rock-the-boat lightheadedness started. I thought, Am I going to wake up blind one morning? That's not likely. I've never read that neuropathy can cause blindness. It can cause orthostatic hypotension, which can cause lightheadedness and dizziness.
I had this same symptom back in the fall of 2014. It lasted 6 weeks and went away with my next epidural at that time. It hasn't returned, until now.
***
I had a prescheduled appointment with the neurologist on Monday, 4/04, to get my neck shots. That appointment has been one of my best with the doctor. Maybe I'll write about why someday.
***
This morning, as I moved my body and arms through the Synergetics motions, hopeful tears streamed down my cheeks.
Oh my gosh. Is it really real? Do I have my arms back?
Don't think that way yet Carol. You still have 4 more weeks until your next epidural.
Yes, but, I think they are back! I've not upped my steroids and I'm almost at Post-week 8.
Just hang on and wait and see what happens over the next 4 weeks.
A couple hours later, as I noticed how 'normal' my arms felt, it hit again.
Oh my fucking god. Oh my fucking god.
Is the nightmare over? What if it's over?
Oh my god. What if it's over?
Again, hopeful tears streamed down my cheeks, as they are at this moment while I type.
Memory upon memory flowed through my mind recalling this nightmare and the unforgiving, relentless, tenacity of this disease as it has spread through my body.
And it has been relentless.
***
Saturday, April 2, 2016.
My cell phone alarm sounds at 7:00 AM. I sit up on the edge of the bed and then stand up and then take a step to get to my phone and turn it off. Simultaneously, the room begins to rock like a boat. I flex my leg muscles to stabilize my stance and maintain balance. I manage to slide my finger across my cell phone screen and silence the alarm and then immediately sit down.
Fuck. Fuck. Fuck.
I lay back down to see if the room rocks again. And it does. I close my eyes and clinch the sheets with my hands to hold on until the rocking stops.
Then I lay still, on my back, in the dark, in the quiet.
God. I was hoping symptoms wouldn't spread this round. My arms have been doing so much better the past couple weeks. But it's Post-week 5-1/2. If the nerve damage spreads, it usually does so between Weeks 4 and 6 and again between Weeks 10 and 12.
I breathe deeply and then slowly rise to a sitting position. And I count. The rocking begins around the count of 10.
I close my eyes, and with both hands I clinch the side of the mattress for balance. I count again. The rocking ceases at around the count of 7.
The same happens when I stand.
Then I am pretty much okay to walk.
This pattern of wooziness is continuing, and has morphed a bit along the way. It's not gotten worse. And I have adapted. I can still drive and ride my bike. I would be devastated if I couldn't ride my bike.
I was quite depressed on Sunday, 4/03, the day after the rock-the-boat lightheadedness started. I thought, Am I going to wake up blind one morning? That's not likely. I've never read that neuropathy can cause blindness. It can cause orthostatic hypotension, which can cause lightheadedness and dizziness.
I had this same symptom back in the fall of 2014. It lasted 6 weeks and went away with my next epidural at that time. It hasn't returned, until now.
***
I had a prescheduled appointment with the neurologist on Monday, 4/04, to get my neck shots. That appointment has been one of my best with the doctor. Maybe I'll write about why someday.
I got my shots and we discussed the dizziness, among other things. As far as the dizziness (which isn't really dizziness; it's rockiness), it is another wait and see, unless it gets worse.
Some good news is that I got my vitamin B6 levels down to normal range. That's HUGE!! And, that could be why my arms are doing as well as they are now.
Some good news is that I got my vitamin B6 levels down to normal range. That's HUGE!! And, that could be why my arms are doing as well as they are now.
Vitamin B6 toxicity can cause permanent nerve damage. That my arms are starting to work again (I hope, hope, hope) indicates that the severity of the damage isn't permanent.
I am really proud of myself (and my body) for getting those levels down. I'm adding back fish and nuts to my diet in limited amounts and will see how I do. I am staying away from any foods or supplements that have added pyridoxine or pyridoxine hcl.
But, I can't count my chickens yet. I have to wait and see.
The other maybe 'good' news is that, my iron level is on the low side. I may have inadvertently lowered my iron while lowering my B6. Maybe. That's 'good' news because maybe my wooziness is due to low iron and not due to nerve damage spreading. Maybe.
So now, I'll get my iron back up and still keep my B6 in the normal range.
***
I typed up my rally sheet for the next 6 weeks leading up to my next epidural on 5/16/16.
Since my iron is low, I added Ironman to my Super Hero therapy team.
I'm relentless too, at least for now.
Go get 'em Carol!
I am really proud of myself (and my body) for getting those levels down. I'm adding back fish and nuts to my diet in limited amounts and will see how I do. I am staying away from any foods or supplements that have added pyridoxine or pyridoxine hcl.
But, I can't count my chickens yet. I have to wait and see.
The other maybe 'good' news is that, my iron level is on the low side. I may have inadvertently lowered my iron while lowering my B6. Maybe. That's 'good' news because maybe my wooziness is due to low iron and not due to nerve damage spreading. Maybe.
So now, I'll get my iron back up and still keep my B6 in the normal range.
***
I typed up my rally sheet for the next 6 weeks leading up to my next epidural on 5/16/16.
Since my iron is low, I added Ironman to my Super Hero therapy team.
I'm relentless too, at least for now.
Go get 'em Carol!
 |
| rally sheet 2(B), 2016 |