April, 2016, will be five years since the onset of polyradiculitis, which is the diagnoses term for the nerve damage that has catapulted my life in a different direction than I ever imagined. In Spring, 2011, I never imagined I would be living what I am living now.
That 5-year reality has hit me hard in the last month or so. It makes me cry.
I don't like calling it an "anniversary." Whether or not it is defintionally so, I feel like the word "anniversary" is a celebration of something good.
This incapacity with which I live is not 'good.' At times, I have almost said, "I wouldn't wish this on anyone." But then I think again - I'm not that good of a person and I might wish it on a few. But typing that right now, I'd still put a stop to it. The every-dayness of it can suck the life right out of a-body.
I have a lot more thoughts, but don't feel like typing them now.
~~~
I'm tired of waiting to edit my pieces before I publish them as blog entries.
And even when I do wait after typing a draft and editing it and making it public, I still come back and edit the piece, or make it private again 'til later.
I don't feel like going to all that trouble.
So I may have an upcoming untitled series, "on the fly," or "thought blurts."
Just stuff I want to get out in the universe somewhere.
(Universe somewhere. Probably a "cloud." The cyber-storage type.)
And of course, I may talk myself right out of making my 'thought blurts' public online. I may only publicize them to trees and critters...and other woods-life.
March 24, 2016
March 22, 2016
Switch on. Switch off. Rearrange. Epigenetics.
Oh my gosh!!
I'm posting this entry on the fly. I just have to let it out somewhere. It may not seem like a big deal, but it is for me.
It's about a video I just watched. I can't figure out how to embed the video, but here is the link: NOVA - Epigentics.
The past few days I've been reading up on lunasin, a polypeptide originally discovered in soy, which led me to read up on "epigenetics," a word which I've come across in my other reading and in some discussion. But I've never really read up on epigenetics, until now.
As I watched and listened to the video, I heard the same language that I have used...unknowingly for me. (But perhaps I've heard the words "switch on" and "switch off" used in this context, without consciously recalling it.)
I've said that I think the drug terbinafine (perhaps along with other life stressors at the onset of my current illness) "switched something on or off" in my cells that caused them to morph. And I recently stated I want to help my immune system "rearrange the chaos" that was produced as a result of the morphing.
In the video, the words "switch on" and "switch off" and "rearrange" are used.
And that really excites me!
I guess I'm easily entertained. :D
The video is from 2007, so I'm sure much more is known now. I won't have time to read more this morning, so I'll just ride on this excitement for today...literally, while I'm cycling. The sun is out again and temperatures should be in the 60s! Yay!
I'm posting this entry on the fly. I just have to let it out somewhere. It may not seem like a big deal, but it is for me.
It's about a video I just watched. I can't figure out how to embed the video, but here is the link: NOVA - Epigentics.
The past few days I've been reading up on lunasin, a polypeptide originally discovered in soy, which led me to read up on "epigenetics," a word which I've come across in my other reading and in some discussion. But I've never really read up on epigenetics, until now.
As I watched and listened to the video, I heard the same language that I have used...unknowingly for me. (But perhaps I've heard the words "switch on" and "switch off" used in this context, without consciously recalling it.)
I've said that I think the drug terbinafine (perhaps along with other life stressors at the onset of my current illness) "switched something on or off" in my cells that caused them to morph. And I recently stated I want to help my immune system "rearrange the chaos" that was produced as a result of the morphing.
In the video, the words "switch on" and "switch off" and "rearrange" are used.
And that really excites me!
I guess I'm easily entertained. :D
The video is from 2007, so I'm sure much more is known now. I won't have time to read more this morning, so I'll just ride on this excitement for today...literally, while I'm cycling. The sun is out again and temperatures should be in the 60s! Yay!
March 12, 2016
Game changers: Rearranging the chaos
What to write?
Do I click "publish" after writing, and read it later and edit and then repeat?
Or do I click "save" in draft, and read it later and edit and then repeat and then talk myself out of clicking "publish?"
I have those thoughts most every time I blog.
I'm sure I'm not alone.
*~*~*
For this 6-week round, my inspirational theme is from the movie Guardians of the Galaxy. (Last round, it was from the movie The Martian.)
I wrote about my "Groot angel" in an earlier blog post. Groot is a tree-type super-hero in the Guardians story. The day after my Groot-angel revelation, I bought a Guardians of the Galaxy DVD. I haven't counted the number of times I've played that movie since I bought it, but it's been a bunch. To my recollection, I haven't watched The Martian (my other hero-therapy movie) since sometime in January.
Just like when I watched The Martian and I witnessed the parallels in that movie to what I've lived with nerve damage and then more parallels would continue to emerge as I viewed the movie over and over, the same has happened with Guardians.
In The Martian, I am Watney figuring out how to survive, step by step. Figuring out what to do next in order to keep my heavy limbs and body mobile and able to function as best they can while at the same time keeping steroid side effects as minimal as possible. I've had to calculate, tally, measure, experiment, and "science the shit out of it," in order to keep my limbs working; day in and day out.
In Guardians, the galaxy is my immune system, which went chaotic in April, 2011. Like the chaos in Guardians of the Galaxy, my immune cells initially turned on each other in confusion about what the real enemy was; ie: autoimmune. But Star-Lord finally gets all the cells working toward the right purpose. I've decided Drax represents my natural killer cells. (haha) And Groot...my friend Groot who represents phtyocannabanoids, helps to enhance my endocannabanoid system which works hand-in-hand with my immune system. [Here's a link to a free online book about our body's endocannabanoid system (ECS): Enhancing Your Endocannabanoid System. At some point, I may blog about how I resensitized my ECS. Fascinating stuff.]
My current focus is to do whatever I can to help my immune system. I mean, I always have that in mind, and it has been a focus...but I'm focusing more on it this round. Most other rounds I've focused more on my endorphin system and how to enhance my own endogenous morphine. (The word "endorphin" is a combination of the words "endogenous" and "morphine.")
As part of my immune-system-enhancement focus this round, I'm looking more deeply at the mind-body connection, specifically the impact from the Knapp-chaos. Along with the drug terbinafine which immediately precipitated the nerve damage onset in 2011, the Knapp-trauma timeline also parallels the onset. I have no doubt it had an impact on my immune system. How much? I don't know. But, it was definitely traumatic...to my very core.
To help with my mind-body approach, I'm using something I used in the past that was a game changer when I overcame previous decades of chronic illness. I'm using Dr. David Schechter's MindBody Workbook, which I already own.
Compared to sixteen years ago when I used this same Workbook, my approach this time is slightly different. Sixteen years ago, emotional suppression was the cause of the pain from my then-herniated disc. Doing the work outlined in the Workbook rid those symptoms, and they have not returned. (Knock on wood...or maybe I should say, "Tap on Groot.")
I do not think the cause of the current nerve damage was/is emotional suppression. I think the terbinafine was the cause, the straw on the camel's back. (I am not the only person to develop nerve damage as a side effect of terbinafine.) But, I do think the Knapp-trauma deeply and negatively impacted my immune system. That, coupled with the terbinafine and regular life stessors at the time, set up a perfect storm in my body.
The result was chaos in my immune function.
So my approach this round is to focus on accessing the impact of the Knapp-trauma, acknowledging it, and hopefully letting go of any continued suppression, if there is any. And in so doing, helping my immune system.
To go along with my Workbook journaling, I am rereading Molecules of Emotion, which tells the story of the discovery of the opiate receptor, which the author, Candace Pert, discovered on October 25, 1972. I had the book on my bookshelf, as I deemed it a keeper when I first read it around 1999. And indeed, it is.
[The endorphin system, which works with opiate receptors, is different from the endocannabinoid system, which works with cannabinoid receptors. The cannabanoid receptors were discovered in the late 1980s. (Link: The Discovery of the Endocannabinoid System.) ]
*~*~*
This round, one wooden bluebird magnet and one wooden red cardinal magnet secure the top two corners of my current rally sheet against the shiny, black refrigerator door. The bottom left corner is secured with a metal guitar magnet. The bottom center and bottom right are secured with two different art magnets, drawings of two different women by two different Art-o-mat artists.
The top of this rally-sheet states:
February 24, 2016 through April 4, 2016
There are no issues that can't be solved or at least managed.
I am durable.
"Fear not Carol! We are Groot. And the Guardians are on OUR side."
Ronan is terbinafine, "turd blossom."
Yondu is steroids; he gives needed relief but has side effects.
Groot is my cannabanoid angel who works closely with the Guardians.
Star-Lord, Gamora, Rocket, and Drax are the Guardians; they are the cells of my immune system.
Guardians win.
Do I click "publish" after writing, and read it later and edit and then repeat?
Or do I click "save" in draft, and read it later and edit and then repeat and then talk myself out of clicking "publish?"
I have those thoughts most every time I blog.
I'm sure I'm not alone.
*~*~*
On my list of things to write is a timeline-update summary of my last round between epidurals, the 12/14/15-through-2/23/16 round. I don't feel like writing it yet, so it will have to wait. A lot happened that round, and I didn't go the regular 12 weeks. Instead, I only lasted 10 weeks and 2 days. It was a rough round, obviously, since I needed to move my epidural up from 12 weeks to 10 weeks. We moved it up from March 7 to February 24.
Because I didn't fare as well with the 12/14/15-50%-reduced-dosage epidural, the 2/24/16 epidural dosage was increased from what I had received on 12/14/15, but it was still lower than pre-12/14/15. That December epidural had been reduced by 50% due to my symptom improvement over the summer and fall, and due to getting sick and having to go to the ER within 24 hours after my 9/21/15 epidural. (Regarding the symptom improvement, I am now 100% confident that the improvements are due to adding Charlotte's Web Hemp Extract to my regimen in June, 2015. It has been a game changer. That said, even though symptoms have improved, I'm still a far cry from normal, and the symptoms have also continued to spread.)
I had a really rough first week after the 2/24/16 epidural. I was expecting better relief with the slight increase of medication from December. When that didn't happen, I got blind-sided. I've since adjusted my expectations and adapted. One interesting thing is that I started getting more relief a week later (on 3/03) after the 2/24 epidural. I have some theories as to why, but I'm not going to write about those here.
My next appointment with the neurologist is on April 4, at which time I'll probably get neck injections. (I get the neck shots every 6 weeks now; it's become routine.) I guess we'll decide then if I think I can make it another 6 weeks for my epidural, or if it looks like I'll only make it another 4 weeks.
Because I didn't fare as well with the 12/14/15-50%-reduced-dosage epidural, the 2/24/16 epidural dosage was increased from what I had received on 12/14/15, but it was still lower than pre-12/14/15. That December epidural had been reduced by 50% due to my symptom improvement over the summer and fall, and due to getting sick and having to go to the ER within 24 hours after my 9/21/15 epidural. (Regarding the symptom improvement, I am now 100% confident that the improvements are due to adding Charlotte's Web Hemp Extract to my regimen in June, 2015. It has been a game changer. That said, even though symptoms have improved, I'm still a far cry from normal, and the symptoms have also continued to spread.)
I had a really rough first week after the 2/24/16 epidural. I was expecting better relief with the slight increase of medication from December. When that didn't happen, I got blind-sided. I've since adjusted my expectations and adapted. One interesting thing is that I started getting more relief a week later (on 3/03) after the 2/24 epidural. I have some theories as to why, but I'm not going to write about those here.
My next appointment with the neurologist is on April 4, at which time I'll probably get neck injections. (I get the neck shots every 6 weeks now; it's become routine.) I guess we'll decide then if I think I can make it another 6 weeks for my epidural, or if it looks like I'll only make it another 4 weeks.
*~*~*
I've never been good at remembering dates until living in these 12-week cycles. I think I can remember the 12-week dates so well because they are like a lifeline-timeline for me.
Beginning in spring, 2015, every 12-week round I attach an 8-1/2-by-11-inch rally sheet to our kitchen refrigerator door. It's something I type from my computer and then print onto white paper.
At the top of the sheet I list the dates of the current round. Directly under the dates I type phrases or quotes or ideas that have kept me and keep me going. Stuff from a song or a movie or a circumstance, anything that has been significant in helping me to continue to put one foot in front of the other. All these things I do to help me mentally are a balancing act between symptom-reality and what could be possible in the future, a balance between hope with substance and fantasy. It helps me cope.
Under my motivational prose I list a few goals, a countdown tally to my next epidural, and my signature. As the weeks go along I put a check mark beside that week once it is complete.
However this round, I'm doing my rally sheet a bit differently. I've reduced the time from 12 weeks to 6 weeks.
I like it so far. The 6-week time frame makes life a bit easier. Instead of having to make it to Week 12, I just need to make it to Week 6 when I will receive my neck injections which give relief. Then, I'll make a new rally sheet for the next 6 weeks to make it to my next epidural (and more neck injections).
Of course the 6-weeks are accomplished one day at a time.
And each day is lived one moment at a time.
I've never been good at remembering dates until living in these 12-week cycles. I think I can remember the 12-week dates so well because they are like a lifeline-timeline for me.
Beginning in spring, 2015, every 12-week round I attach an 8-1/2-by-11-inch rally sheet to our kitchen refrigerator door. It's something I type from my computer and then print onto white paper.
At the top of the sheet I list the dates of the current round. Directly under the dates I type phrases or quotes or ideas that have kept me and keep me going. Stuff from a song or a movie or a circumstance, anything that has been significant in helping me to continue to put one foot in front of the other. All these things I do to help me mentally are a balancing act between symptom-reality and what could be possible in the future, a balance between hope with substance and fantasy. It helps me cope.
Under my motivational prose I list a few goals, a countdown tally to my next epidural, and my signature. As the weeks go along I put a check mark beside that week once it is complete.
However this round, I'm doing my rally sheet a bit differently. I've reduced the time from 12 weeks to 6 weeks.
I like it so far. The 6-week time frame makes life a bit easier. Instead of having to make it to Week 12, I just need to make it to Week 6 when I will receive my neck injections which give relief. Then, I'll make a new rally sheet for the next 6 weeks to make it to my next epidural (and more neck injections).
Of course the 6-weeks are accomplished one day at a time.
And each day is lived one moment at a time.
For this 6-week round, my inspirational theme is from the movie Guardians of the Galaxy. (Last round, it was from the movie The Martian.)
I wrote about my "Groot angel" in an earlier blog post. Groot is a tree-type super-hero in the Guardians story. The day after my Groot-angel revelation, I bought a Guardians of the Galaxy DVD. I haven't counted the number of times I've played that movie since I bought it, but it's been a bunch. To my recollection, I haven't watched The Martian (my other hero-therapy movie) since sometime in January.
Just like when I watched The Martian and I witnessed the parallels in that movie to what I've lived with nerve damage and then more parallels would continue to emerge as I viewed the movie over and over, the same has happened with Guardians.
In The Martian, I am Watney figuring out how to survive, step by step. Figuring out what to do next in order to keep my heavy limbs and body mobile and able to function as best they can while at the same time keeping steroid side effects as minimal as possible. I've had to calculate, tally, measure, experiment, and "science the shit out of it," in order to keep my limbs working; day in and day out.
In Guardians, the galaxy is my immune system, which went chaotic in April, 2011. Like the chaos in Guardians of the Galaxy, my immune cells initially turned on each other in confusion about what the real enemy was; ie: autoimmune. But Star-Lord finally gets all the cells working toward the right purpose. I've decided Drax represents my natural killer cells. (haha) And Groot...my friend Groot who represents phtyocannabanoids, helps to enhance my endocannabanoid system which works hand-in-hand with my immune system. [Here's a link to a free online book about our body's endocannabanoid system (ECS): Enhancing Your Endocannabanoid System. At some point, I may blog about how I resensitized my ECS. Fascinating stuff.]
*~*~*
My current focus is to do whatever I can to help my immune system. I mean, I always have that in mind, and it has been a focus...but I'm focusing more on it this round. Most other rounds I've focused more on my endorphin system and how to enhance my own endogenous morphine. (The word "endorphin" is a combination of the words "endogenous" and "morphine.")
As part of my immune-system-enhancement focus this round, I'm looking more deeply at the mind-body connection, specifically the impact from the Knapp-chaos. Along with the drug terbinafine which immediately precipitated the nerve damage onset in 2011, the Knapp-trauma timeline also parallels the onset. I have no doubt it had an impact on my immune system. How much? I don't know. But, it was definitely traumatic...to my very core.
To help with my mind-body approach, I'm using something I used in the past that was a game changer when I overcame previous decades of chronic illness. I'm using Dr. David Schechter's MindBody Workbook, which I already own.
Compared to sixteen years ago when I used this same Workbook, my approach this time is slightly different. Sixteen years ago, emotional suppression was the cause of the pain from my then-herniated disc. Doing the work outlined in the Workbook rid those symptoms, and they have not returned. (Knock on wood...or maybe I should say, "Tap on Groot.")
I do not think the cause of the current nerve damage was/is emotional suppression. I think the terbinafine was the cause, the straw on the camel's back. (I am not the only person to develop nerve damage as a side effect of terbinafine.) But, I do think the Knapp-trauma deeply and negatively impacted my immune system. That, coupled with the terbinafine and regular life stessors at the time, set up a perfect storm in my body.
The result was chaos in my immune function.
So my approach this round is to focus on accessing the impact of the Knapp-trauma, acknowledging it, and hopefully letting go of any continued suppression, if there is any. And in so doing, helping my immune system.
To go along with my Workbook journaling, I am rereading Molecules of Emotion, which tells the story of the discovery of the opiate receptor, which the author, Candace Pert, discovered on October 25, 1972. I had the book on my bookshelf, as I deemed it a keeper when I first read it around 1999. And indeed, it is.
[The endorphin system, which works with opiate receptors, is different from the endocannabinoid system, which works with cannabinoid receptors. The cannabanoid receptors were discovered in the late 1980s. (Link: The Discovery of the Endocannabinoid System.) ]
*~*~*
This round, one wooden bluebird magnet and one wooden red cardinal magnet secure the top two corners of my current rally sheet against the shiny, black refrigerator door. The bottom left corner is secured with a metal guitar magnet. The bottom center and bottom right are secured with two different art magnets, drawings of two different women by two different Art-o-mat artists.
The top of this rally-sheet states:
February 24, 2016 through April 4, 2016
There are no issues that can't be solved or at least managed.
I am durable.
"Fear not Carol! We are Groot. And the Guardians are on OUR side."
Ronan is terbinafine, "turd blossom."
Yondu is steroids; he gives needed relief but has side effects.
Groot is my cannabanoid angel who works closely with the Guardians.
Star-Lord, Gamora, Rocket, and Drax are the Guardians; they are the cells of my immune system.
Guardians win.
