Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet below.
The past few years have been a test of strength, endurance, and possibilities amidst constant setbacks to overcome. 5 years after the injury that led to my CRPS, I did go back to school for a degree in Corporate Publishing. At the end of 2006 I took leave to have my permanent Spinal Cord Stimulator implanted and I returned approximately 10 weeks later. Due to not being able to drive any longer, my husband took me and picked me up in between his own full-time work schedule. By 2007, I wasn’t able to keep up any longer. My grandson was born in 2006, too. My husbands first heart attack when he was 37, 2 stent placements, his Diabetes diagnosis, he only used accumulated vacation time for it and returned to work in a weeks time. In 2007, we bought or first home, but he also lost his 13 year career and stability when his company C.S.A.A. (AAA) relocated out of California. I continued to raise awareness for chronic pain, met Trudy Thomas, became a leader at MD Junction’s RSD Support and remained for 3 years. My own support group which I began on My Space in 2003 was moved to Facebook, yet I didn’t move the members with it. I like for people to find us rather than to send out invites or notify. I met Barby through Trudy. My son had a traumatic brain injury in August of 2011 and my husband had a second heart attack within a year. I stayed in the PICU with Ozra for 10 days. In December of 2012 I stayed at the hospital with my husband for the entire 9 days during his quadruple bypass surgery, the first few days I slept in the van. In 2012, I had Gall bladder surgery and in 2013 I had another Gall bladder surgery which included the removal of part of my liver and multiple hemangioma’s. https://rsdadvisory.com/2013/07/17/gall-bladder-fiasco-continued-and-hopefully-the-final-chapter/
2014 my daughters liver disease, our sons birth defect diagnosis from Shriners Children’s Hospital unrelated to his TBI and my surgery to have my SCS battery replaced. Piece of cake, mostly. 2015 started with a bang and 3 weeks of hard Cymbalta, Zonegran, and Clonazapam withdrawal due to WC delaying Rx refills. The other 2 weren’t filled either, but really no effects from them as much as the other 3. I no longer take Clonazapam or get the Lidoderm. It hasn’t been easy, especially when Clonazapam did help and pain management medication was and is already at the lowest minimum. I already do all that I can to minimize my own agony and I practice these coping strategies each and every day. My husband just had surgery to repair a torn shoulder a few months ago and we just learned by MRI he has another tear in his knee. We’re still learning all we can at Stanford for our daughter. Rikki is managing well. My purpose is in helping others, it’s all I’ve ever done one way or another, but it isn’t my passion. I’ve come to realize it can’t be. It’s not the fire flickering about the dancing flames that motivates my spirit to fly. My bucket-list goal survives all this. It’s not writing, I have that. It’s not policy, POP gave me that opportunity again. It’s much deeper than that, at least for me. Our son and oldest daughter are moving in together on the 1st. My man and I will have our home to ourselves. January 26th begins my 16th year. I’m not sure where 2016 will take us, I just know I take a lickin’ and keep on tickin’ … for mine.
Overcoming Challenging Obstacles
“Pain isn’t in our head, but it is in our brain, and our minds. Pain is sent from the spinal cord, sending messages to our brain, back to our spinal cord and up and down those nerve pathways. Pain signals reach our endorphins, limbic system, https://www.dartmouth.edu/~rswenson/NeuroSci/chapter_9.html hypothalamus, where they then affect our emotions and other bodily functions. http://www.medicinenet.com/script/main/art.asp?articlekey=10812
Functional restoration afforded me lessons and insight to be able to push on. Sometimes we already realize these lessons for someone else, but when it’s us, we don’t recognize it the same, we change, unless we change us back.
It’s a daily process to overcome additional challenges brought on by chronic or intractable pain. It’s moment by moment at times. Having to stop something suddenly to practice breathing exercises to decrease a stress situation brought on by either emotion or a spike in pain, bring a rise in blood pressure down, use focal points, imagery or going to my “happy place” in my mind to ease myself.
“I will walk, when I cannot walk I will carry myself, when I cannot carry myself, I will fly” ©2009-2015 Twinkle VanFleet/@rsdcrpsfire Written while attending Compass Center for Functional Restoration
I began recording both my P & E. I tracked my “pain” level and my “emotional” level using the same Numeric Rating Scale. The 11 point 0 – 10 scale where 0 represents “no pain” and 10 represents “worse pain imaginable”, “as bad as I can imagine” or unimaginable. I don’t do this anymore because I’ve learned to have the awareness without tracking, but for example at the moment I logged, my E/emotions/stress was an 8 and my P/pain/physical was a 5, I would eventually learn that my pain level would most likely rise anytime. I had to use my cognitive tools right away to reduce my stressors in order to manage the physical pain. I discussed this concept at MDJunction.com when I was a group leader in the RSD Support Forum in 2009.
Life itself can be hard, add pain to it, and it’s even harder. It can be managed with the right tools. It’s never going to be perfect, but we can make it as comfortable or as tolerable as possible for ourselves. Removing or decreasing triggers that instigate pain have eased me. I can’t watch the internet all day. It’s not because I don’t love or care for everyone. It’s because there are pain triggers everywhere. When we see images, graphics, memes of illness or disease scrolling by, especially our own, a trigger can occur. I’ve learned over the years to recognize this. I have the awareness to understand that I can be a contributing factor in my own discomfort.
I never went to preschool and Kindergarten was only for a week or two. I started school in the first grade. I was taught at home and I was reading at advanced levels by the age of 5. My comprehension and spelling ability was always above average. While I either suppressed it or just didn’t care to acknowledge it, I did go to special classes in the first and second grade because I couldn’t pronounce the letter’s S and T in words and sentences properly. I was a critical thinker immediately in life. http://www.criticalthinking.org/pages/defining-critical-thinking/766
By the time I got to my 4th elementary school in the middle of the school year in the second grade, I didn’t have to tell anyone I went to the classes with the special ones. Those new kids and that neighborhood became the ones I grew up with until I left Sacramento in October of the 9th grade to move to L.A. County for my dad’s job. The rest of that year carried with it a bit of insecurity. I started Drama at my new high school and as a Junior I was in second year advanced drama, speech, debate and thespian clubs, involved in school plays, in chamber singers for a while, I swirled the baton too, but chose my priorities and kept to the one’s I still use today. By the middle of the 11th grade I was off to the high desert where my parents bought a home. I’ve been in 4 high schools, 2 Junior high’s due to the district split and several elementary. I learned to adapt young. I may not like it, but I do it fairly well. I’m a survivor of repeated childhood molestation and indirect physical and emotional abuse.
I’ve been an Empath http://themindunleashed.org/2013/10/30-traits-of-empath.html for as long as I can remember. I can vividly still remember leaving my teething ring on the back metal bumper edge of my dad’s best friend’s pickup truck and them driving away with it. I’m hypersensitive to people, places and things sometimes to my own detriment, yet I’m also a no-nonsense girl. I’m inclined to the natural order of things, including man and woman, but I’m not a doormat. I love my crazy and he does, too! Why? Because it’s really not all that crazy, I just like to have it appear so in the midst all the uncertainty in life. Laughing is the best medicine of all. If I can make you laugh, give you something to laugh at even if it’s at my own expense, I’m thrilled to have been of service.”
Empathy Vs Sympathy
Sure there are times I think “Dang, no one gets it!” I don’t mean in everyday situations, I mean in my critical thinking. Those who are on the same page fear agreeing openly until my thought, reasoning, even an educated statement that I make is validated by someone with high education, authority or status. By that time I really don’t need the care, concern or acknowledgment. I might have needed it when I was no one to be acknowledged for. No one will ever know in these situations because I’ll not ever treat them any different and there isn’t any animosity, but there is recall. Why? Because everything we do or don’t do to another person makes an impact on them. Those impacts influence the rest of their lives by accumulation in decisions and choices. This includes my interaction with other people.
By the time I was in the 4th grade I was in the MGM program. At that time called Mentally Gifted Minds. My 9-year-old grandson is currently in the Gifted and Talented Education Program (G.A.T.E.).
During the 4th to 6th grade 2 of my class periods were reserved for tutoring the NES (Non English Speaking) students who just joined our Country from Vietnam, and other Southeast Asian communities. I was 8 years old when I began the 4th grade. These years were 1975-1977/78. Due to being bright enough to be a student teacher at such a young age, I missed normal class subject time; I began to fall behind in math studies. My mathematical education is only that of general knowledge. I held enough that I was promoted to General Manager for a Restaurant by the time I was 24.
I started college when I was 15 in the high desert of California. Law and Acting. I studied both Fundamentals of Crime and Delinquency and Theory and Practice of Acting. I loved being a minor, non-adult, in an adult law class. I loved that my mind was evolving, but it was at a pace others couldn’t keep up with. I loved learning by law enforcement mentors and the few things I participated in to grow and develop lifetime strategies for. I’ve been fond of the Law, Sociology, Philosophy, Theology, Theosophy, The Human Mind, Psychology, Enlightenment, Consciousness. Alternative Lifestyles, Natural Order and the last decade or so Pain Psychology. I like various other topics relating to each of these, too. When I indulge in a book these are the things I enlighten myself in.” Excerpts from, Overcoming Challenging Obstacles by Twinkle VanFleet (Currently unpublished in its entirety) ©2015 Twinkle VanFleet, Overcoming Challenging Obstacles. All rights reserved.
(Several paragraphs have been removed from the original for this share)
It really is a multi-disciplinary approach to pain care and taking an active role in our own overall well-being that makes the difference between making it or breaking it. Even if we have to fake it to make it to get there.
Instead of editing, I should perhaps add commentary on this sentence. “I’m inclined to the natural order of things, including man and woman, but I’m not a doormat”. Oh boy, um, since I have a hard time seeing people “different”, man and woman meant him and I, not someone else. ie, natural order, where there is a dominant and a submissive role (in any situation).
Phew! Hope that helps!
Well that was a bit depressing to read. After five years of tactile, thermal,static and mechanical Allodynia, I’ve gotten to the point where I try not to make the pain my identity. I fight for treatments and work on every aspect of my emotional and physical well-being. That’s all we can do. Our best. I also believe it can be beat. Believing this is as good as it gets isn’t an option. For every condition in this world there have been people that have been put into remission. And I know with everything in me this can be beat too.
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My apologies that it was a depressing read. I’m right there with you in that “That’s all we can do. Our best”.
As long as we “believe” we can go on even if it’s a placebo effect. It’s like… it’s matters so very much, yet at the same time it’s all too much.
But see, you and I understand that. Others like us, but those who’ve never been there and felt it for themselves will never know. Okay, maybe a few have family members who endure, they are able to “understand” and feel for them because their love is enough to allow it, but not “feel” their pain, emotions, and whatever else might ail them. They may see it, feel the back lash of dealing with it, but that’s about it. As long as I have air to breathe, I’ll be sure to let everyone know this, If they haven’t walked it, don’t talk about it like they have and unless they have the gift of knowing, (I’ll be sure to peg them on that one) I’ll question someone every time I get the guts to do so.
My heart goes out to you. Sending love and hugs.
Wishing you pain eased days and nights,
Very well said. Pain is evil and tests your sanity. All I can say is I didn’t walk for a year. I’m walking. The pain spread into my glutes and legs in September of 2014. I laid on my stomach literally until about February of 2015. It was a result of coming off of Cymbalta. I fought for Ketamine and Lidocaine infusions and started in March of 2015. I am walking again and I can sit and be touched again. I fought to be put on Lamotragine and the cold pain came down 30%. I have recently been put on LDN after months of research. My pain specialist is always willing to look at my research ang give things a shot. This drug seems to be a safer option, with minimal side effects from what I have read. It’s promising. I have zero side effect and no increase in pain. Almost 99% of the time I get a paradoxical effect. No improvements yet but I am only on 0. 5mg. It also can take months to work, but people have been put into remission. My tactile allodynia started after trying to get off Ativan. My clothes hurt. Was put back on and the symptom remained. . . But somehow I am beating that too. Any ounce of worry or fear fires it off. However, with determination I am winning. I truly believe that the brain can repair itself. What has been created can be undone. If you are curious you can look up microglia and RSD or Allodynia. LDN seems to potentially block microglia. It also blocks opioid receptors for about 4 hours at night (needs to be compounded as a fast relese) . After the 4 hours it signals the body to start producing more endorphins…. which can ease pain. Anyway, I think it’s worth looking at.
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Everything is worth looking at, learning, seeing if it might be beneficial to each of us. When we get to the point we’re at, we can’t just dismiss possibilities, but do our homework and learn what we can, make our decision and go forth with the understanding it may work or fail. Hopefully our choices ease us.and if not, we continue searching because no matter we have to be stable to go on.