Olivia and I rode part of the New River Trail today, from Ivanhoe to Gambetta and back to Ivanhoe. Total mileage: 21.3.
The New River Trail is 57 miles long which totals 114 miles if one rides both directions, which is what I am doing, in sections. I've now biked over half and will hopefully get the rest ridden by the end of June, or before.
I saw quite a few chipmunks today. No deer or bear. I did see one snake and quite a few hawks, as usual. I rode though one tunnel and over a few bridges, and I saw two dams.
On my trek home, in Edward the Explorer, I drove by a monument that sits by the side of a curvy, mountain road. It caught my attention because it was odd, out there in the middle of nowhere, "nowhere" actually being Austinville, Virginia. Three empty flag poles stood tall above a boulder-size, granite stone with engraved script and engraved outlines of the states of Virginia and Texas. I saw it out of the corner of my eye as I drove past it. I put on my brakes and backed up and pulled into the parking area, which also serves as a boat access for the New River.
The monument is a memorial dedicated to Stephen F. Austin (aka the "father of Texas") for whom the city of Austin, Texas, changed it's name -- from Waterloo to Austin. Stephen's father, Moses, developed the lead mining industry in the southwest area of Virginia. Stephen was born there, but the family moved west when Stephen was four years old. I wonder why the memorial is dedicated to Stephen and not his father?
The New River Trail reminds me of the green tunnel of the AT; it can get monotonous. But there is no PUD (pointless up and down) on the New River Trail. It's a rail trail, so it's level.
I like biking the Greenway and Salem Lake route more than the New River Trail. The Salem Lake route has ups and downs and lots of curves, and I get to ride through a creek if it's rained, and there always seems to be an adventure waiting for Olivia and me. It's like the trail thinks, Carol and Olivia will be here today..let's entertain them!
Last week, cycling my Salem Lake route, I saw a grey fox. S/he crossed the Greenway in front of me. At first I thought it was a small dog, and then wondered if it was a coyote, but then I identified it as a fox. I scared it...and it scared me. We both surprised each other.
Last week, I also saw a male turkey strutting his stuff for three female turkeys. I've seen quite a few female turkeys the past couple years on my Greenway rides, but this was my first time seeing a male. The four turkeys were on the golf course that is beside the Greenway. The scene made me laugh out loud.
Last week, I had three ground hog sightings. I think it was the same hog because the sightings were in the same vicinity each time. I also saw a few snakes, of course.
The finale of last week, was when Olivia and I survived a creek adventure. I'm thankful for the cyclist who saved us, quite literally. The cyclist happened to have his own creek adventure right before Olivia and I had ours; the creek took his bike! It's kind of a long story. Maybe I'll write it someday. Suffice it to say, I vow to never again misjudge the power of a creek after the rains.
My cycling goal for 2016 is 1500 miles.
So far I've ridden:
...January = 155.8 miles
...February = 67.5 miles
...March = 179.5 miles
...April = 130.5 miles
...May (through 5/24) = 117.90
651.2 miles and counting...
So far, doing good.
May 24, 2016
May 23, 2016
In the context of new-normals: An introduction
In early mid-May, 2016, after googling "isolation and disability," I found an online community, Inspire.com, which is associated with the Invisible Disabilities Association. So far, the community seems a pretty good fit for a place where I can share, as I feel like sharing.
Last week I posted the following on my profile page for that online community. So, I'm gonna post it here, on toss & ripple.
Since I posted it as a profile on a forum regarding disability, the content consists of health challenges and treatments, present and past.
~*~
~*~
In the spring of 2011, within 6 weeks of taking a generic form of oral Lamisil (drug name: terbinafine) for a long-standing toe-nail fungus, I developed nerve damage in all my limbs and extremities simultaneously. I have since learned I'm not the only person to develop nerve damage while taking terbinafine. I was also going through other life-stessors at the time of onset which may too have been a factor.
In the spring of 2013, two years and eight medical professionals and a few diagnoses later, the condition was finally diagnosed correctly (I hope) as cervical and lumbar radiculopathy, aka polyradiculitis, which is a rare type of peripheral neuropathy that is typically associated with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) or Guillain-Barré Syndrome (GBS). I have neither of those two diseases.
Polyradiculitis can sometimes mimic ALS, which has been the case for me. Muscle loss has been significant. Among other adjustments, I've had to learn how to move my body differently, calculate my body movements, and calculate energy compartments almost every moment of each day. (I know folks here on Inspire can totally understand that.) It has been one of the hardest things (if not the hardest) I've ever had to learn to live with and accept.
The nerve damage has slowly spread through my body to include legs, feet, arms, hands, mid-back on either side of my spine, neck, and jaws. I've also developed shortness of breath and possibly orthostatic hypotension. I may also have a yet-unidentified autoimmune connective tissue disorder. At the end of July, 2015, we discovered I had B-6 toxicity which can cause and exasperate nerve damage. (I was only on 4 milligrams of pyridoxine B-6 at the time.) In April, 2016, we discovered my iron was on the lower end of the normal scale, perhaps an inadvertent result of diet change in August, 2016, to lower my B-6 level. (I was successful at getting my B-6 back into normal range which has helped improve my arm function.)
I have been on various medications and utilized alternative approaches since the onset, some of which I had utilized in previous decades living with a different set of chronic health conditions that I actually overcame. (See below at the **. ) To help me manage this new normal, I've drawn upon those past decades which include not only my own health, but also helping to care for my father after he was in an automobile accident that rendered him a quadriplegic until his death almost 13 years later.
Currently, as of May, 2016, I receive a steroid lumbar epidural every 12 weeks and steroid cervical neck shots every 6 weeks. These have helped to keep me from becoming bedridden. I take low-dose, daily prednisone (since July, 2011); hydrocodone and generic Xanax (alprazolam) occasionally as needed; daily cannabidiol therapy including Charlotte's Web Hemp Extract; nutrition, including herbs and supplements; hot-stone massage; stretching exercises; journaling and bibliotherapy; movie therapy; humor; mindfulness; listening to music; building good memories and recalling them; spending time with pets; communing with nature; and riding my bike in nature. (This link provides a partial timeline since the onset in 2011 through December, 2015: Timeline since 2011 and the onset of nerve damage... .)
A year prior to my current illness, I had taken up backpacking with a plan to flip-flop-thru-hike (in two sections) the 2180-mile Appalachian Trail. I can no longer backpack; nor can I hike very far. But I discovered I can ride a bike much more easily than walking. I mainly cycle on local Greenways and rail trails. Among other benefits, cycling provides me pain relief, fresh air, communing with nature and myself, exercise, and an occasional chance-meeting with other abled-differently cyclists who have also found refuge on two wheels (or three) and metal. My bike's name is Olivia. We are partners! :)
~*~
**From 1981 through 2005, I lived managing severe asthma; numerous bouts of pneumonia; multiple sinus surgeries (1984, '85, '86, '96); environmental, chemical, food, and inhalant allergies; hives, welts, and various skin disorders; systemic candida; depression; anxiety; mood swings; chronic fatigue; body aches; mini-migraines: mercury toxicity; a herniated disc; and a myriad of other symptoms that go with an over-responsive and depleted immune system.
Through those years, I was pumped with intravenous drugs; swallowed or inhaled a host of pharmaceuticals (including 1000's of doses of steroids); was pricked with needles 100's of times for various reasons; received a myriad of allergy tests and antigens including one experimental treatment known at the time as Enzyme Potentiated Desensitization (EDP); had my insides scrutinized through dozens of x-rays and other scans, an MRI, and an abundance of lab work; received oral chelation therapy, osteopathic and chiropractic manipulations, colon hydrotherapy, massage, physical therapy, acupuncture, oral and intravenous vitamin/mineral supplementation, and psychological counseling; used various approaches of mind-body-energy work, herbs, low heat saunas, coffee enemas, homeopathy, strict dietary protocols, prayer, affirmations, "claiming my healing," yoga, meditation, journaling, and bibliotherapy. Some of those approaches were helpful, some weren't. A bit over two decades later, as previously stated, I gained back my health. (Here is a link to a narrative about those years: Seeking Life Along The Way [Addendum].)
In 2008 I had full-hip replacement surgery. Ends up, I received a replacement that was put on recall. Thankfully, mine is doing okay so far. My hip degeneration was probably a result of prednisone and steroid use to keep me breathing through the previous decades with asthma.
In December, 2009, I contracted MRSA which erupted 4 different times over the following 5 months. "Tap on Groot" (my phrase, instead of "knock of wood"), I haven't had MRSA since that time.
Then in 2011, I developed the nerve damage, as stated above.
In February, 2013, I had carpal tunnel surgery.
I maintain several public blogs. My main blog is toss & ripple.
~*~
~*~
Last week I posted the following on my profile page for that online community. So, I'm gonna post it here, on toss & ripple.
Since I posted it as a profile on a forum regarding disability, the content consists of health challenges and treatments, present and past.
~*~
~*~
In the spring of 2011, within 6 weeks of taking a generic form of oral Lamisil (drug name: terbinafine) for a long-standing toe-nail fungus, I developed nerve damage in all my limbs and extremities simultaneously. I have since learned I'm not the only person to develop nerve damage while taking terbinafine. I was also going through other life-stessors at the time of onset which may too have been a factor.
In the spring of 2013, two years and eight medical professionals and a few diagnoses later, the condition was finally diagnosed correctly (I hope) as cervical and lumbar radiculopathy, aka polyradiculitis, which is a rare type of peripheral neuropathy that is typically associated with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) or Guillain-Barré Syndrome (GBS). I have neither of those two diseases.
Polyradiculitis can sometimes mimic ALS, which has been the case for me. Muscle loss has been significant. Among other adjustments, I've had to learn how to move my body differently, calculate my body movements, and calculate energy compartments almost every moment of each day. (I know folks here on Inspire can totally understand that.) It has been one of the hardest things (if not the hardest) I've ever had to learn to live with and accept.
The nerve damage has slowly spread through my body to include legs, feet, arms, hands, mid-back on either side of my spine, neck, and jaws. I've also developed shortness of breath and possibly orthostatic hypotension. I may also have a yet-unidentified autoimmune connective tissue disorder. At the end of July, 2015, we discovered I had B-6 toxicity which can cause and exasperate nerve damage. (I was only on 4 milligrams of pyridoxine B-6 at the time.) In April, 2016, we discovered my iron was on the lower end of the normal scale, perhaps an inadvertent result of diet change in August, 2016, to lower my B-6 level. (I was successful at getting my B-6 back into normal range which has helped improve my arm function.)
I have been on various medications and utilized alternative approaches since the onset, some of which I had utilized in previous decades living with a different set of chronic health conditions that I actually overcame. (See below at the **. ) To help me manage this new normal, I've drawn upon those past decades which include not only my own health, but also helping to care for my father after he was in an automobile accident that rendered him a quadriplegic until his death almost 13 years later.
Currently, as of May, 2016, I receive a steroid lumbar epidural every 12 weeks and steroid cervical neck shots every 6 weeks. These have helped to keep me from becoming bedridden. I take low-dose, daily prednisone (since July, 2011); hydrocodone and generic Xanax (alprazolam) occasionally as needed; daily cannabidiol therapy including Charlotte's Web Hemp Extract; nutrition, including herbs and supplements; hot-stone massage; stretching exercises; journaling and bibliotherapy; movie therapy; humor; mindfulness; listening to music; building good memories and recalling them; spending time with pets; communing with nature; and riding my bike in nature. (This link provides a partial timeline since the onset in 2011 through December, 2015: Timeline since 2011 and the onset of nerve damage... .)
A year prior to my current illness, I had taken up backpacking with a plan to flip-flop-thru-hike (in two sections) the 2180-mile Appalachian Trail. I can no longer backpack; nor can I hike very far. But I discovered I can ride a bike much more easily than walking. I mainly cycle on local Greenways and rail trails. Among other benefits, cycling provides me pain relief, fresh air, communing with nature and myself, exercise, and an occasional chance-meeting with other abled-differently cyclists who have also found refuge on two wheels (or three) and metal. My bike's name is Olivia. We are partners! :)
~*~
**From 1981 through 2005, I lived managing severe asthma; numerous bouts of pneumonia; multiple sinus surgeries (1984, '85, '86, '96); environmental, chemical, food, and inhalant allergies; hives, welts, and various skin disorders; systemic candida; depression; anxiety; mood swings; chronic fatigue; body aches; mini-migraines: mercury toxicity; a herniated disc; and a myriad of other symptoms that go with an over-responsive and depleted immune system.
Through those years, I was pumped with intravenous drugs; swallowed or inhaled a host of pharmaceuticals (including 1000's of doses of steroids); was pricked with needles 100's of times for various reasons; received a myriad of allergy tests and antigens including one experimental treatment known at the time as Enzyme Potentiated Desensitization (EDP); had my insides scrutinized through dozens of x-rays and other scans, an MRI, and an abundance of lab work; received oral chelation therapy, osteopathic and chiropractic manipulations, colon hydrotherapy, massage, physical therapy, acupuncture, oral and intravenous vitamin/mineral supplementation, and psychological counseling; used various approaches of mind-body-energy work, herbs, low heat saunas, coffee enemas, homeopathy, strict dietary protocols, prayer, affirmations, "claiming my healing," yoga, meditation, journaling, and bibliotherapy. Some of those approaches were helpful, some weren't. A bit over two decades later, as previously stated, I gained back my health. (Here is a link to a narrative about those years: Seeking Life Along The Way [Addendum].)
In 2008 I had full-hip replacement surgery. Ends up, I received a replacement that was put on recall. Thankfully, mine is doing okay so far. My hip degeneration was probably a result of prednisone and steroid use to keep me breathing through the previous decades with asthma.
In December, 2009, I contracted MRSA which erupted 4 different times over the following 5 months. "Tap on Groot" (my phrase, instead of "knock of wood"), I haven't had MRSA since that time.
Then in 2011, I developed the nerve damage, as stated above.
In February, 2013, I had carpal tunnel surgery.
I maintain several public blogs. My main blog is toss & ripple.
~*~
~*~
May 18, 2016
Round #12(a): May 16 through June 27, 2016, rally sheet
Okay.
I'm starting my next round between epidurals.
The entire round will be finished on August 8, 2016, when I will receive my next epidural which will be Epidural #13.
The first part of Round #12 will be up on June 27, 2016, when I will receive my neck shots.
I began receiving epidurals in January, 2014.
Some of my focal points this round are acceptance, surrender, allowing grief, and gaining more peace and emotional strength.
Probably kind of in that order.
I must confess, I am tired of this struggle.
Currently there is no prognosis, no end in sight.
But there will be an end at some point.
There is always an end.
Every 12-week round I gain function at the beginning, and then begin to lose function as the effects wear off.
That has always been the pattern.
It's hard to describe what I go through.
It's kind of like having a baby every 12 weeks, except it's not.
The last weeks of each 12-week round, I become quite depressed.
I sometimes become angry, if I have the energy.
I become more isolated.
Life becomes even harder with what-should-be the simplest of tasks.
When I am a couple days from receiving my epidural, I go from despair to hope.
Along with the hope comes nervousness and anxiety, every time.
I converse with myself, every time.
"What if it doesn't work this time?"
"Carol, it always works."
"What if Doc decides he's not giving me anymore?"
"He has assured you that won't be the case."
"Well. I've been told similar in the past by other health professionals. And those assurances were false."
"He's not one of those."
"Yes, that is true. But what if my diagnosis is changed again? Or there could come a time that Doc says "no more" for certain protocol reasons. Or he might move or something. What if the next doctor would deny you epidurals?"
"Well, those are possibilities. So, you would just have to accept where you are and manage the best you can."
And after the hope of relief, (which I always get)...
And after feeling the initial nervousness, (which always subsides after I get my injections)...
And after the dialog with myself....
The despair lifts a bit.
This past Saturday, 5/14, as I felt the anxiety mixed with hope about my epidural on 5/16, I went from feeling quite desolate to feeling alive, in an instant.
I'm starting my next round between epidurals.
The entire round will be finished on August 8, 2016, when I will receive my next epidural which will be Epidural #13.
The first part of Round #12 will be up on June 27, 2016, when I will receive my neck shots.
I began receiving epidurals in January, 2014.
Some of my focal points this round are acceptance, surrender, allowing grief, and gaining more peace and emotional strength.
Probably kind of in that order.
I must confess, I am tired of this struggle.
Currently there is no prognosis, no end in sight.
But there will be an end at some point.
There is always an end.
Every 12-week round I gain function at the beginning, and then begin to lose function as the effects wear off.
That has always been the pattern.
It's hard to describe what I go through.
It's kind of like having a baby every 12 weeks, except it's not.
The last weeks of each 12-week round, I become quite depressed.
I sometimes become angry, if I have the energy.
I become more isolated.
Life becomes even harder with what-should-be the simplest of tasks.
When I am a couple days from receiving my epidural, I go from despair to hope.
Along with the hope comes nervousness and anxiety, every time.
I converse with myself, every time.
"What if it doesn't work this time?"
"Carol, it always works."
"What if Doc decides he's not giving me anymore?"
"He has assured you that won't be the case."
"Well. I've been told similar in the past by other health professionals. And those assurances were false."
"He's not one of those."
"Yes, that is true. But what if my diagnosis is changed again? Or there could come a time that Doc says "no more" for certain protocol reasons. Or he might move or something. What if the next doctor would deny you epidurals?"
"Well, those are possibilities. So, you would just have to accept where you are and manage the best you can."
And after the hope of relief, (which I always get)...
And after feeling the initial nervousness, (which always subsides after I get my injections)...
And after the dialog with myself....
The despair lifts a bit.
This past Saturday, 5/14, as I felt the anxiety mixed with hope about my epidural on 5/16, I went from feeling quite desolate to feeling alive, in an instant.
It startled me, catching my immediate attention.
And I thought through the pattern mentioned above.
The pattern is like this:
Loss of function
Anger
Depression
Anxiety
Hope
Acceptance
And I thought, Maybe this is like a mini-grief cycle.
Because each time, after the relief and gain of function, comes the loss of function and pain.
It is loss. Big time loss.
And I grieve.
So I want to better manage, listen, and definitely honor that process.
And that is one of my main focuses this round:
How can I better manage post-Weeks Nine through Twelve?
A fellow sojourner turned me onto a new analogy that I really, really like.
It's called Spoon Theory, originated by Christine Miserandino.
Here's a link to the the birth of Spoon Theory.
A spoon represents energy deposits, and the tasks the energy is used for.
Certain tasks costs such-and-such amount of spoons.
The amount of spoons it may take for these tasks can change each day.
I have gotten into the habit of subjectively calculating my energy allotments.
Spoons might be a fun analogy and different way to think about my calculations.
It's still a subjective scale but with an objective analogy.
Plus, spoons are cool. They are gentle utensils, mostly. Not sharp like knives and forks.
And then there is spooning.
And spoon art, spoon jewelry, commemorative spoons.
I'm sure I'l think of more spoon nuances.
Here we go....
My rally sheet below, for Round #12, 3rd (A) quarter, 2016...
*~*
*~*
May 16, 2016 through June 27, 2016
Focus...
Mindset for upcoming Weeks 9 thru 12
Accept it: Function will diminish. I am allowed to grieve the loss.
Accept it: I will feel isolated. Have gratitude that I can still feel.
Accept it: I only have so many spoons.
Notice: What I can do now that I couldn't last year.
Notice: How many spoons I have each day.
Recall: How far I've gotten.
Recall:: Good memory bank: Family. AT. Roan. Grayson. Pets. Olivia. Edward.
Mindfulness
Meditate upon peace
Laugh regularly
The to-do-without list: 3 things max
Surrender
Success
You just begin. That's all it is... Mark Watney: Botanist, Space Pirate, Ironman
My body is the Galaxy.
The Guardians are my immune system.
We are Groot. And the Guardians on OUR side.
Guardians win. And Gomora kicks ass.
Move daily...
Synergetics: If I feel like it
Cycling with Olivia: 185 miles
Countdown:
Week 1: Begins: M, 5/16/16 ... Completed: M, 5/23/16
Week 2: Begins: M, 5/23/16 ... Completed: M, 5/30/16
Week 3: Begins: M, 5/30/16 ... Completed: M, 6/06/16
Week 4: Begins: M, 6/06/16 ... Completed: M, 6/13/16
Week 5: Begins: M, 6/13/16 ... Completed: M, 6/20/16 (Becky, 6/16/16)
Week 6 Begins: M, 6/20/16 ... Completed: M, 6/27/16 (Neck shots)
Continue...
Disability papers
Taxes
Filing system: medical financials, pet sitting
Keep up the good work...
Pet sitting
Bills, Toilets, Kitchen sink & counter.
Laundry when able.
Carol, CEO
cyclist. explorer. overcomer.
*~*
And I thought through the pattern mentioned above.
The pattern is like this:
Loss of function
Anger
Depression
Anxiety
Hope
Acceptance
And I thought, Maybe this is like a mini-grief cycle.
Because each time, after the relief and gain of function, comes the loss of function and pain.
It is loss. Big time loss.
And I grieve.
So I want to better manage, listen, and definitely honor that process.
And that is one of my main focuses this round:
How can I better manage post-Weeks Nine through Twelve?
A fellow sojourner turned me onto a new analogy that I really, really like.
It's called Spoon Theory, originated by Christine Miserandino.
Here's a link to the the birth of Spoon Theory.
A spoon represents energy deposits, and the tasks the energy is used for.
Certain tasks costs such-and-such amount of spoons.
The amount of spoons it may take for these tasks can change each day.
I have gotten into the habit of subjectively calculating my energy allotments.
Spoons might be a fun analogy and different way to think about my calculations.
It's still a subjective scale but with an objective analogy.
Plus, spoons are cool. They are gentle utensils, mostly. Not sharp like knives and forks.
And then there is spooning.
And spoon art, spoon jewelry, commemorative spoons.
I'm sure I'l think of more spoon nuances.
Here we go....
My rally sheet below, for Round #12, 3rd (A) quarter, 2016...
*~*
*~*
May 16, 2016 through June 27, 2016
Focus...
Mindset for upcoming Weeks 9 thru 12
Accept it: Function will diminish. I am allowed to grieve the loss.
Accept it: I will feel isolated. Have gratitude that I can still feel.
Accept it: I only have so many spoons.
Notice: What I can do now that I couldn't last year.
Notice: How many spoons I have each day.
Recall: How far I've gotten.
Recall:: Good memory bank: Family. AT. Roan. Grayson. Pets. Olivia. Edward.
Mindfulness
Meditate upon peace
Laugh regularly
The to-do-without list: 3 things max
Surrender
Success
You just begin. That's all it is... Mark Watney: Botanist, Space Pirate, Ironman
My body is the Galaxy.
The Guardians are my immune system.
We are Groot. And the Guardians on OUR side.
Guardians win. And Gomora kicks ass.
Move daily...
Synergetics: If I feel like it
Cycling with Olivia: 185 miles
Countdown:
Week 1: Begins: M, 5/16/16 ... Completed: M, 5/23/16
Week 2: Begins: M, 5/23/16 ... Completed: M, 5/30/16
Week 3: Begins: M, 5/30/16 ... Completed: M, 6/06/16
Week 4: Begins: M, 6/06/16 ... Completed: M, 6/13/16
Week 5: Begins: M, 6/13/16 ... Completed: M, 6/20/16 (Becky, 6/16/16)
Week 6 Begins: M, 6/20/16 ... Completed: M, 6/27/16 (Neck shots)
Continue...
Disability papers
Taxes
Filing system: medical financials, pet sitting
Keep up the good work...
Pet sitting
Bills, Toilets, Kitchen sink & counter.
Laundry when able.
Carol, CEO
cyclist. explorer. overcomer.
*~*