I’ve had a lingering cold going on for a few weeks. Most days not so bad. And then a couple of days ago, wham! Yesterday was so bad. Every ache in my body reminded me of this time last year and I really had to put those thoughts away. I couldn’t let coming off Cymbalta instigate depressive moments and I still wasn’t going to turn back to it just to feel better. I asked my husband if he could stop and get me some Chamomile, Peppermint, lemon and honey on the way back from our daughters. Drank that all day. Coughing, or sudden movement causes a reaction in my right upper side. I kept telling myself it’s just pain, you already know that pain, but I didn’t want to know it, not again, and I started to not be able to handle it. So I asked if they could go get me some therma heat patches. Got that on and went to bed. Each time I moved my back, FML, my arm wouldn’t settle down, moving my neck tore through my shoulder, my fingers were pulsating and going numb before repeating the same sensations over and over. Now what? Took the pillows out from under my head and tried to position my spine enough to relieve all that pressure. Got my arm above my head, left it there, and finally fell asleep.
But then the heat patch activated and I woke up drenched hours later Ha! Slept until after noon time today and haven’t done that but a few times the last 6 months.
Today is still rough, swollen and omg all over, but am managing.
There isn’t anything disheartening in this. Since I’ve been able to maintain my legs enough by stretching and strengthening and other than being sore they’re doing great. I got through a horrible night that last year, too many of them, I couldn’t make it through.
These my friends are blessings.
It’s been 6 weeks since I completed the Gohl Program. This post will share progress and setbacks since returning from the healing retreat. Hard times dictate choices. A week after returning I lost 3 puppies. 2 of them, I held until they took their last breaths. One of them I held all day. Both of them I gave my own breath to to try to save them. I lost them 12 hours a part, so those 3 days were intense. My son’s car was stolen out of his driveway with important gear in the trunk. It was located abandoned the next day but without the safe.
My mom and dads home burned down.
News 3 Exclusive
Vietnam veteran, wife and granddaughter lose Harris County home in fire
Published: December 2, 2016, 6:40 pm Updated: December 5, 2016, 9:51 am
Don Tresca Vietnam Vet house Fire (Please share)
My daughter’s liver is still unstable and with little to do for it. She’s been a patient at the Liver Transplant center at Stanford for awhile now and is being sent to their pain management for care.
My husband was cleared for knee surgery though we’re still waiting on scheduling.
In the midst of it all, I’m trying to maintain reductions in pain with physical movement, stretching, and all those things I need to do to recover and strengthen myself further.
Right now, I’m doggie sitting and have been since Monday. Aloha and Gaia came home. They’re Ohana’s brother and sister. They were born on Valentine’s Day, hours after I was admitted to the hospital. They were named from me having just returned from Hawaii a month before. Mahalo and Cupid are no longer with us. Aloha was renamed Legend by his new family and Gaia was renamed Bella. They’ve been together all along and came home as if they never left. They knew their birth place, they knew their den. They were both also reunited with their mother, Oreo. Aloha and Gaia sleep at my head, Ohana sleeps behind my knees, Lilly flower in the crook of my neck and Independence at my feet. Yep full twin bed. Freedom, Amo, and Oreo with my husband.
My CRPS legs and feet are still doing fairly well for what they had become all the years prior and for what they’re becoming. Pain in my arm is much better than before. There really isn’t anything wrong with my arm, directly, it’s referred pain and symptoms from my back, spine. Nerve roots and all that blah blah. I can feel the tug of the curves in my spine and it’s still sort of depressing because I don’t know how to reverse the errors in my own body anymore than I know how to correct the mistakes in healthcare that could have potentially eased it if it had been addressed. The only time my back effects my legs is when those bones shift.
I don’t think most will ever realize the difference in pain levels before and after MLT. That even with these issues the impact of learning what to do for ourselves and how we can decrease additional pain and symptoms simply by a therapy rather than by medication or injections.
After the California International Marathon I was down a few days but that was because I attempted a walk I hadn’t done in 16 years. These few days however wasn’t the week + that activity, events, walking, standing, movement or even stress would have previously caused.
It’s not easy my friends, but it’s getting easier. I don’t have pain medication to turn to for chronic or even an acute situation and I’ve flat out never cheated taking any even when they were in my reach. February will be a year without medication management for pain and related symptoms.
I use sublingual oil and gummies, medicinal, on occasion. I’ve also used Kratom, which has no more risk than opioids when used responsibly.
I still haven’t turned my SCS back on. Not because I didn’t need it a few times but because I’m struggling to not want to need anything. I’m still not using my ASV. I still have no plans on ever being put in a scoliosis brace and I’m still not considering corrective surgery for it.
Wanna live? Don’t rely on others to fulfill it for you.
“Do not ask the stones or the trees how to live, they can not tell you ; they do not have tongues; do not ask the wise man how to live for, if he knows , he will know he cannot tell you; if you would learn how to live , do not ask the question; its answer is not in the question but in the answer, which is not in words; do not ask how to live, but, instead, proceed to do so.”
Page 9 ~Magicians of Gor
Definitions of stress include the physical pressure, pull, or other force exerted on one thing by another; strain,In physiology, stress is defined as;
Included in my letter of resignation to the International Pain Foundation was that “Stress is my weakness” right now. It had become my weakness since January of 2015. I had come to realize a long time ago that stress increased physical pain and uncontrolled physical pain instigated anxiety highs for me. I had struggled on and off with bouts of depression. Prior to this year diagnosed with mild recurrent major depressive disorder secondary to the injury that led to my CRPS and a psych sequela. A confirmed diagnosis of PTSD, which I’ve shared a couple of times over the years, but have not discussed much of. My PTSD isn’t a solo diagnosis for a specific event, but rather multi diagnosis’ for multiple unrelated events.
It’s been a hell of a year! It’s also been heaven! Can you imagine? The best and the worse, the worse and the best happening simultaneously over a short period of time? Next month begins a year since that first night I can’t ever erase from my existence. Valentines Day becomes a year to the day, and the 3rd week in April is the second. I’m really only 8 months forward from it all. I really have a way to go in healing.
I think I’m doing pretty darned good for pain having not been addressed until a few weeks before I tried the Gohl Program (October 24th) and the Manual Ligament Therapy performed by Arik Gohl. After transferring my primary care to the Ellison Ambulatory Care Center and choosing the teaching facility so that students could learn from me and I could learn from them, I was sent to a new pain management facility rather quickly. This though only covered my upper body, not my lower. I was now opposite of what I had endured in the many years prior. I had been covered for my bilateral CRPS and SCS, but not for my upper extremities. I had a CT, learned of what had been occurring with my spine, the several new diagnosis’s, started PT, ended PT and I had 2 cervical steroid injections and decided after the program to cancel the 3rd.
Leaving iPain was abrupt and perhaps shitty, deactivating my Facebook account was also abrupt and spontaneous. Heck, declining followup appointments, injections, and mental health care was also on the spot. I know each of the perceptions that can be considered. 1. I’m reckless. 2. I’m Bipolar. 3. I only considered myself. 4. I’m playing games. 5. I’m crazy. 6. Out of character.
Let me help sort these out. 1. I’m not careless of consequences nor am I irresponsible. 2. I wouldn’t care if I was, but I’m not. 3. I considered everyone in those split seconds, including myself. 4. The only games I like to play are slots. 5. I love my crazy as do many others. 6. Perhaps, though it could have been in character all along.
What does that mean? In character all along? Pain, passion, purpose. Compassion, forgiveness, devotion, appreciation, thankfulness, gratitude,and diversity are all strong traits for me as is compliance, submission, and loyalty. Those can sometimes provoke conflict. But then again, I’m a different kind of duck.
As 2013 ended and I couldn’t change what I needed to, I couldn’t make someone else want to live, take care of themselves, after being given new life, or repair someone else’s frontal lobe from damage, or make tumors disappear in another and I couldn’t change the errors of others from a 2012/2013 healthcare related failure for myself, I rose and fell, but got back up each and every time.
Until I couldn’t, until I didn’t want to anymore.
In 2012 I had my Gall Bladder removed after a painful 20 hour wait in the Emergency Department. Acute or Chronic, the wait was painful. When I was taken back, I was scheduled for surgery immediately. I hemorrhaged during both surgeries a year apart.
I had never felt judgement in healthcare prior to this second removal. I had never been treated adversely or in any judgmental way. Ever!
A month ago, I would have never considered resigning as Advocacy Director and after being apart of iPain 5 years. On the contrary my only vision was remaining indefinitely.
“Don’t cry because it’s over, smile because it happened.” — Dr. Seuss
Fighting for your own life, while already fighting for others, up close and personal others, in addition to advocacy. And not knowing, or understanding, right in the midst of the end, who to choose, what to choose. Me or them. I can still hear the words that slipped from my lips to him that night. I can see it all so vividly and I can hear my own quivering voice say it to him so powerful that..
(Maybe I’ll share the rest of that another time)
But I survived. And then I survived again. And I was pissed! I had to be who someone else wanted me to be.. still. I couldn’t be unwell, not dangling, and make sure that I didn’t disappoint anyone, pretend it never happened because such events are unbecoming of family matters, social knowledge and sometimes even friendships or that online I had to be talked about in whispers and private calls and that would have all been okay as long as the record was correct. All it takes for accuracy is to ask the question. If someone doesn’t wish to answer it still doesn’t mean to create a scenario.
I was negative for all prescribed and illicit drugs, including all those extra’s screened for. I declined pain care by first responders and I declined pain management upon arrival at the hospital.
Consider that I had not been taking pain meds, opioid related, legal or illegal, benzo’s etc, and once injected in the ambulance there would have been no way to prove I had none of these substances in my system. Not even Marijuana. Understand? I don’t regret the 200 ml bottle of Vodka I finished just minutes before those acts of “I’m done!”. Nope!
All I’ve wanted to do is fight. I won’t go looking for confrontation, but if I’m confronted, hands. It’s really not as wrong as it seems. It just means that I protect my space and my ground.
Stress is down. Leveled.
Without, in regards to the internet.
“The two most important days in your life are the day you are born and the day you find out why.” — Mark Twain
I always knew why, I just didn’t want to know to what extent.
Review – Gohl Program | Part 3
By Twinkle VanFleet
It’s important to understand that MLT isn’t a magic pill we get to swallow and become miraculously cured by. It’s the beginning of curing ourselves. Cure in medicine is defined as:
- Restoration of health; recovery from disease.
- A method or course of treatment used to restore health.
- An agent that restores health; a remedy.
- cured , cur·ing , cures
- To restore a person to health.
- To effect a recovery from a disease or disorder.
Remission in Medicine is defined as:
remission re·mis·sion (rĭ-mĭsh’ən)
- Abatement or subsiding of the symptoms of a disease.
- The period during which the symptoms of a disease abate or subside.
It’s not really difficult to understand that a cure is just as possible as remission can be. How? The answer is simply by restoring a person to health.
“Manual Ligament Therapy (MLT) is a new and original technique created by Arik Gohl. … We have learned that ligaments are a significant source of pain, especially in cases of chronic pain. Until injured ligaments can heal from their underlying dysfunction, muscles will remain in a tense and guarded state.”
I know what you’re thinking. If you have Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome that you’ll forever live a life of pain with potential spreading from the original site of injury to the rest of your body.
It can be true, but it doesn’t have to be. All of those symptoms, burning, allodynia (pain resulting from a stimulus (as a light touch of the skin) which would not normally provoke pain; also : a condition marked by allodynia) hyperalgesia (increased sensitivity to pain or enhanced intensity of pain sensation), hyperesthesia (unusual or pathological sensitivity of the skin or of a particular sense)
I really don’t have either of the above anymore. My body is still learning not to feel sensations of pain while also recognizing those areas that aren’t hurting. If anything its just hyperesthesia I’m working through. Example, sock me and I’ll feel that sensation long after the actual event. Like a repetitive action.
Keep in mind after years of pain, signals misfiring, injuries taking on abnormal healing paths, other areas of my body becoming effected beyond the site of the original injury that I have a main role to play in reversing these abnormalities. I have to reset my perception to pain by reversing all that my body knows, felt, and has learned as a result.
5 days of Manual Ligament Therapy has gotten me to this point. The custom orthotics is correcting every abnormal step I’ve taken since January of 2001.
You might be thinking manual? Yes, you’ll have to be touched, and you’ll have to move areas you’ve stopped using due to RSD/CRPS, chronic pain. This isn’t traditional physical therapy, you’ll actually feel restricted tissue, muscles, and a myofascial release of those symptoms and connective fibrous tissue eased.
What about burning which is the hallmark symptom of RSD? It’s eased the same way.
Currently MLT isn’t a covered therapy under insurance. Like many other integrative, complimentary, or holistic practices, including acupuncture, acupressure and similar therapies which may be beneficial we’re still legislatively working on these options for you.
MLT is non-invasive.
Another healing retreat will be held at the Sheraton Los Angeles International Airport beginning Monday, November 28, 2016. http://www.sheratonlax.com/
The cost for the treatment is $2,500 and doesn’t include travel or hotel. I know it sounds like a lot, but it’s not compared to a single injection or invasive procedure billed to insurance or accumulative and yearly co-pays. For more information please contact Monica Depriest: Monica@gohlprogram.com
I’ll be present also to follow-up on my own therapy.
So with that I look forward to meeting you and hope that you’ll give yourself the opportunity to feel better. Sometimes it takes pain to get rid of it. It’s a process of not only healing but believing in yourselves enough to understand that’s it’s possible rather than impossible and pain being the rest of your lives.
To be continued…
Review – Gohl Program
By Twinkle VanFleet
Review – Gohl Program | Part 2
By Twinkle VanFleet
Monica Depriest and Arik Gohl picked me up from my son’s home on October 23rd, 2016. My husband and I had spent the weekend there to take care of our grandson De’Mantai so his mom could enjoy some time away. I had just had a cervical steroid injection. This was my second in 8 weeks. I had only ever had Lumbar Sympathetic Nerve blocks prior and over a dozen of them. I had began with a series of 3 scheduled one week apart in 2006. It had taken 6 years for any treatment other than medication management due to Worker’s Compensation. So that I’m precise rather than confusing, these weren’t denied. Had they been denied I could appeal, instead just stalled and delayed. Since the first 2 series of 3, I’ve had one injection a year since, generally during winter and often times delayed beyond my physician’s control.
We arrived in Loomis California an area outside of Sacramento that evening.
Photos above taken 3 hours apart and the same day as the video below. November 4, 2016.
Admittedly, my body was weak and pain was high, but I hadn’t shared that yet. I tend to go off on my own, and attempt to distract myself when among others. As we arrived, Susie and her son Tommy who has RSD/CRPS, along with her son David had also arrived. Jamie and Spencer arrived later. Jamie Pearson is active in the RSD/CRPS communities, too. Arik’s wife Veronica was amazing and helped us all feel at home. Vero’s hospitality and playful spirit afforded us the ease of being less anxious and at ease among those we didn’t know. Sam Ballentyne licensed therapist and energy healer was also present during the week. Dr. Edward Glaser arrived the next morning. Dr. Glaser is the owner of Sole Supports and an engineer and DPM specializing in Podiatry and Orthotics. Another Podiatrist joined us to observe and all our therapies would begin the morning of October 24th.
16 years. 10 with a permanent Spinal Cord Stimulator (SCS) that hasn’t been turned back on since the morning of the 24th. My only blessing that has been on day in and day out since 2006. The only time it’s ever been off is to either charge a drained battery or to push past 2-3 days to allow my brain to scramble and disguise the pain signals it provided. Our brains realize it’s being tricked. Turning it off let it work better again when turning it back on.
It’s been over a week since returning. I wasn’t suppose to ever be able to do this, at least without added pain or causing a flare-up. Lets see if I can get to the point of running one day. 2 days ago, I was still told I never will.
So what is Manual Ligament Therapy?
Are you still curious? ANATOMY PHYSIOLOGY, PATHOPHYSIOLOGY REVIEW Ligaments: A source of musculoskeletal disorders
Review – Gohl Program | Part 1
By Twinkle VanFleet
I know you can’t wait to learn more and I can’t wait to share it with you. Stay tuned for Review – Gohl Program | Part 3
In the meantime, here’s Jamie’s story on
To be Continued…
Review – Gohl Program
By Twinkle VanFleet
Approximately 3 weeks ago I was contacted by Barby Ingle, President of the International Pain Foundation with a program to consider. Barby sent me Dr. Edward Glaser’s phone number and a link to what the program entailed.
Those of you who know me would also know that I had to do more research on the Manual Ligament Therapy (MLT) being offered. I had to learn more! I had to try to understand the concept, and how it might work if it could. It wasn’t just the Gohl Program itself that I researched. I also pulled up each name involved. 3 of which were Dr. Glaser, Arik Gohl, and Dr. Forbes. Then I read up on Monica DePriest and her daughter Haley DePriest who had CRPS and who is well today because of the program and the techniques that Mr. Gohl’s therapy provider her. Testimonials.
See how my curiosity piqued even more? We’ve all been told that CRPS/RSD is incurable. We’ve learned that it’s also in our blood not just our bodies. I wasn’t as skeptical as some may have been because I had already, several times, researched techniques involving manual trigger point therapies, acupressure, Chinese medicine techniques and similar holistic treatments dating back to the 1800’s. I had already been treated earlier this year with the Bowen Technique.
I had become so let down by western medicine not being able to relieve my own CRPS, or specifically CRPS Type 2/Causalgia in any way other than by Lumbar Sympathetic Nerve Blocks, medications, and traditional physical therapies that only provided minimal relief, if any, that depressions worsened and hope was nowhere to be found. Since December of 2006 the only steady I had was my Medtronic Spinal Cord Stimulator which reduced or disguised enough symptoms that walking wasn’t as painful as it was prior, and pain medications could be reduced by my choice in the permanent placement.
Complex Regional Pain Syndrome: Systemic Complications
CRPS is becoming the great imitator in pain medicine. This article discusses the symptomatology of the disease, including atypical presentations.
By Robert J. Schwartzman, MD
Complex Regional Pain Syndrome Guidelines 4th Edition
All those things I had accomplished over the years, I found little happiness in. I put on the fake it to make it mask and I wore it quite well. Who would have ever thought that I struggled so badly with suicidal ideations that even my spiritual beliefs couldn’t stop me from wanting to bail on this world.
A mid-metatarsal separation of my right foot (also known as a Lis Franc fracture) January of 2001 in an industrial injury began the last 16 years of uncertainty, loss, rejection, abandonment, failure, and secondary diagnosis’. I still had my upper body though. My hands, fingers, and arms would make up the difference. I could still write type and use social media. In 2009, 9 years after, I got a left foot accelerator pedal installed on our van to be able to drive again. Oh I tried! By that time my left leg was too weak also to drive safely.
I had already had degenerative changes in my spine, but pretended that I didn’t. My legs hurt so bad that it diverted any back pain. 3 years ago my arms started doing things I didn’t understand. Beginning with my left and worsening on the right. By the time I had an EMG my left was reduced and my right just continued to worsen. I’ve never had an EMG or nerve conduction studies on the right side. As 2016 approached the pain in my neck, shoulder, chest, upper and mid back, head, face, the sensations of pulling, tugging, ripping, intense pins and needles, paraesthesia, became so unrelenting that I really couldn’t take it anymore. Bending at the waist started a flare each and every time. I still have to work on that. I had lost feeling in my thumb, forefinger and wrist. My right hand had lost strength.
But wait! I still had my left hand and arm. If I ever needed the gift in being ambidextrous, I would really need it now more than ever to be a part of anything, offline or online.
I had unknowingly believed in hope while other’s told me I was in denial and that I had to accept all those things I wouldn’t be and couldn’t do and would never do. At a higher level of consciousness I saw the light ahead, but was conflicted by the darkness of despair.
I’m already so much better than I’ve ever been in 16 years because of MLT.
I celebrated my 48th birthday while at the program. My son drove my husband to Loomis CA to spend an hour or so with me. First time I’ve been away, on my own, anywhere in 15 years.
While I’m still wrapping my own head around it, it’s not as unbelievable as it seems. I promise.
But wait! There’s more..
To be continued…