CRPS

Advocacy

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As I laid snuggled in bed last night I considered again any future in CRPS Advocacy. I’ve previously mentioned that I’ve already stepped back from much of this.  I’m currently not involved in any. I’m partnered with organizations and alliances which may include but aren’t solely related to.

Bay Area, California Taken by Kurtis Ozie (Ozra) VanFleet Sept 24, 2015

Photo credit: Kurtis (Ozra) VanFleet Sept 24, 2015. Bay Area, CA. Stronger Than Pain

 

I re considered momentarily if I should have anything to do with being a voice for it again. Of course this tugged my heart strings as I contemplated. I need to be sure before I take on any further commitments. Since many of my views and beliefs are no longer what they once were I’m really not what you want and therefore I shouldn’t be involved.

I could feel my head move slightly to the left and then to the right. I was shaking my head no.

While I’ll go on to speak about or share things that have impacted me and others in various capacities of pain, illness and disability, I’ll leave CRPS Advocacy to those of you who inspire to do so.

As able, I’ll share you’re endeavors. I’ll try to read and share your blogs, awareness, events, and accomplishments.

This is really all I can do and I hope that it’s enough.

 

The Simpler Things

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My aspirations are much simpler now. They include living each day however I might in a different mindset that I had previously. If I hadn’t gone through all that I have, especially the last 3 years and definitely since February of 2016 I most likely would still be thinking as I did then and doing as I did then. I most likely wouldn’t have even found a way to go on, yet I have.

images - beach

 

I might have stayed depressed waiting and wondering why or if ever I would feel okay enough in body again. That’s heavy. Don’t we all feel that way? Or most of us?

I use to think that physicians were suppose to help us. I don’t even believe that anymore. I know sometimes people expect me to choose one side or another of something. I don’t choose like that.

Perhaps some of it , my lack of forming words or expressing myself correctly enough to others is from abrupt discontinuation of medications so many times, or the TBI’s I’ve had or my Cerebral Palsy is catching up to me a little more, or the mental break downs as a result of unmanageable physical pain. You know brain fried?

Or just believing that I’m responsible for me above anyone or anything else.

Maybe. Or maybe I do express myself well enough and it’s just perception. Some people can’t wait to be offended. I suppose it’s easy enough to just ask for clarification, but the human emotion rather feel slighted so they have something to fight for or against.

I didn’t even use to be a TV person. Not like I am now. I enjoy watching a Series. I had pretty much given up writing, 100’s of poems and lyrics over the years. I couldn’t squeeze in joy for myself. I’ve taken up painting. I can’t stroke right, or brush evenly, I don’t have enough feeling in my thumb, forefinger, and my middle of finger of that same hand locks from curving. I can barely feel one side of that arm up to my elbow. I still use that hand. I’m ambidextrous which has helped me greatly.

I enjoy making my husbands food even if it takes me all day. A couple of days ago I was cutting an onion and sliced the palm of my left hand. On Thanksgiving it did the same thing to tip of my finger. I have choices. Stop using these hands to prevent accidents or keep using them. I need to use them. My legs ache often, my CRPS type 2 is so so right now only because of the colder weather but I move my legs everyday, ankle raises, knee raises, back movement, arms. I don’t have full body CRPS, I do have full body various other diagnosis’ including both my lumbar and cervical spine.  If I didn’t stretch, my flesh would constrict against my bones and my pain would be escalated.

I was barely 33 when my life stopped as a result of CRPS. Or is that I let my life stop because of it. I’m still thinking about that.

I’m a caregiver to my husband who also isn’t well. My son is a caregiver to me as needed. He was at the hospital for me, us, during his dads last heart attack last month. He advocated for us with physicians, he stayed in front of me so I could drive the car home from the ER parking hot safely as his dad was being transported from the first hospital to another.

I’m in the process of becoming a member at the Church our son was baptized at years ago. I’m a baptized Lutheran. My goal is to be baptized again by submersion as a local yet Southern Baptist. I miss attending at times and that’s a set back for me. Or is it still progress? My Narcolepsy is worse against right now but I set the cell alarm to vibrate to wake me or keep me from the dozes. I really am learning to manage my own life.

Today I have chicken breasts in the crock pot with a buffalo sauce. It’ll be ready by the time my husband gets home from work tonight about 11:00 p.m.

Not this Saturday but the next we’re going to our local swap meet outside auction, I don’t get out much still relying on someone else to get me anywhere. Over the summer I had myself on a great schedule. Up early, in bed early, but I’ve altered my routines to his schedule. I get a nap each evening between 5:50 and 6:30 p.m. About 7 p.m I make an espresso.

I can’t be amidst pain all day long so I’ve minimized my internet time again. Feeling other people too much only sets pain into my own body.

Heck, maybe I really shouldn’t be on the internet at all. Anything that can get in the way, will. Ha! I have no working computer again and did try to restore my laptop it didn’t work. My husband tried a few days ago too. Nope. One more option and that is to buy an encasing pull the hard drive, enclose it, and go from there.

The one I speak of above hasn’t worked since summer time. I was using my really old back up one, the one that barely did anything because of such an old version of windows but… my dog rushed through the side table, tangled in the cord and to the ground it went before I could catch it from making contact.

Actually, I do have a working comp it’s just not mine, but am grateful to use it.

Is there even such a thing as bad luck? I’m not even sure about that one anymore. Randomness.

I was filling out an application the other night and the entire page went down during it. Maybe that wasn’t meant to be either yet I could change it by doing so again. Nah.

My aspiration is to live.

My crock pot is my best friend and my home made cafe mocha makes me smile.

I wish you smiles today!

My Natural Alternatives for Pain, Depression and Anxiety.

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My natural alternatives for pain, depression, anxiety, pain management, and medication management that I’ve used over the last year that has afforded me an ability to maintain physical pain levels in addition to the emotional secondary conflicts that living with intractable pain has caused.

I look forward to those of you who can provide additional natural or holistic recommendations for myself and others.

Please be advised that any information that I share is NOT medical advice and that I’m not responsible for your choice to consider or use any of the options provided. Always consult with your healthcare team or pharmacist first.

Milk Thistle

Commonly used to detox the body, especially the liver. It can also help control or prevent Diabetes, lower cholesterol and is an antiinflammatory.

Turmeric
Anti inflammatory, antioxidant, treats arthritis and pain related diseases and disorders, including age related chronic diseases. It can be effective as an antidepressant.

Chronic inflammation is known to be a contributor to many common Western diseases, syndromes, and other illnesses. Curcumin the active
ingredient in Turmeric can inhibit many molecules known to play major roles in inflammation.

Curcumin Boosts Brain-Derived Neurotrophic Factor, Linked to Improved Brain Function and Lower Risk of Brain Diseases. Ref: Healthline.

http://www.healthline.com/nutrition/top-10-evidence-based-health-benefits-of-turmeric

For Anxiety and Insomnia- Valerian Root

Valerian root is a common ingredient sold in dietary supplements. It claims to cure insomnia and nervous tension caused by anxiety. Valerian has been used for centuries as an herbal remedy.

It was used in ancient Greece and Rome to ease:

Insomnia
Nervousness
Trembling
Headaches
Stress

Based on the available research, take 300 to 600 milligrams (mg) of valerian root 30 minutes to two hours before bedtime. This is best for insomnia or sleep trouble. For tea, soak 2 to 3 grams of dried herbal valerian root in 1 cup of hot water for 10 to 15 minutes.

Valerian root seems to work best after taking it regularly for two or more weeks. Don’t take valerian root for more than a month without talking to your doctor.

http://www.healthline.com/health/food-nutrition/valerian-root#overview1

I use Valerian both as a hot tea and in capsule form. It’s been quite helpful as a replacement for prescribed medications.

*** If you’re on any medications, please discuss using the Valerian Root with your physician or pharmacist.
Magnesium

It’s believed that magnesium in citrate are better absorbed than sulfate forms.

 

Top 9 Health Benefits of Magnesium

Helps Increase Energy.
Calms Nerves and Anxiety.
Treats Insomnia and Helps You Fall Asleep.
Helps with Digestion by Relieving Constipation.
Relieves Muscle Aches and Spasms.
Regulates Levels of Calcium, Potassium and Sodium.
Important for Heart Health.
Prevents Migraine Headaches.

Dreams– Some people have reported lucid dreaming using it. Being a lucid dreamer already, I love this for myself.

Magnesium Sulfate also known as Epsom’s salt. https://www.everydayhealth.com/drugs/magnesium-sulfate
More info: https://draxe.com/magnesium-supplements/

I use Magnesium in both capsule form as well as drink it in the sulfate form. Yes it’s the same form that we use to soak in baths with. It helps constipation for any reason. In the capsule form it provides natural ease from depression.

Echinacea for immune system support and more. http://www.medicalnewstoday.com/articles/252684.php

Echinacea

Vitamins B12, B1, B6, Calcium, Zinc, Vitamin C are each important also.

Chamomile, peppermint, Lavender, Rosemary, Ginger, Green teas.

Ginger, I shave, cut and steep fresh ginger for it’s anti inflammatory properties and to use for female problems, namely dysmenorrhea. It is a blood thinner too so don’t use it if taking a pharmaceutical that’s also a thinner.

Chia seeds

“Chia” means strength, and folklore has it that these cultures used the tiny black and white seeds as an energy booster. That makes sense, as chia seeds are a concentrated food containing healthy omega-3 fatty acids, carbohydrates, protein, fiber, antioxidants, and calcium.

It truly is a super food. A really good article from August 2nd 2017 can be found on http://www.medicalnewstoday.com/articles/291334.php

I use them nearly everyday. in both food and drink.

http://www.medicalnewstoday.com/articles/291334.php

Kratom

It can be used for pain relief, depression, anxiety and a number of other ailments. It can be used as a stimulant. Each is dependent on dosing. It’s only dangerous if not used responsibly just like anything else. The only effect I’ve ever felt from it is a sense of calming which helped physical pain. I’ve drank it as a tea.

St. Johns Wort. This can cause adverse effects if taken with medications. It can be quite helpful for those who aren’t on any medications. It can interact adversely with other herbs or supplements.  Be safe.

“Some of the most impressive health benefits of St. John’s Wort include its ability to treat depression, improve mood swings, relieve anxiety, reduce the severity of premenstrual symptoms, ease addictive tendencies, regulate hormonal activity, prevent cancer, protect against viral infections, reduce inflammation, and soothe the nervous system.” Ref: Organic Facts.

https://www.organicfacts.net/health-benefits/herbs-and-spices/st-johns-wort.htm

OTC’s

Epsom salts for soaking in order to relieve aching muscles and promote relaxation. I adore the Lavender and Eucalyptus kind and have even added it to my kiddie pool this summer. It provides aromatherapy as well as physical relaxation. It promotes a happy mood. Don’t drink this type though!

Epsom’s salts gel. It’s a topical form of Epsoms and can be applied to painful areas.

Aspercreme with Lidocaine

Thermo heat wraps

Capsaicin
It’s the same ingredient found in chili peppers. It’s hot. It can be helpful for some and adverse to others. It’s actually something I’m not able to use, The heat was severe and I couldn’t even wash it off without it burning for an extended period of time.

Pre natal vitamins are a source of multivitamins in a single dose. Don’t overuse it.

I’m still not able to walk long, but I am able to stay up longer and take more steps. I haven’t been able to run yet and it’s been over 17 years that I have.
I’ve been able to restore some bad posture that was also contributing to pain levels, dysfunction and spinal deterioration. I’ve learned to breathe better by being more mindful to belly breath instead of hold my breath in pain and hyperventilate. My little kiddie pool has been great for me this summer as it has allowed me to move my limbs, bones, muscles, and spine with weightless effort. This has helped me do a little more outside of water.

I’ve restored blood restriction from movement. I’ve reduced discoloration and edema in my CRPS side. I’ve eased a lot of internal organ involvement by using my little ball (A tennis ball learned at the Gohl Program) on my belly in a circular motion minimally a few times a week. Stretching, movement.

You might be thinking how? right now. How can you? How can I? Am I better off than you are regarding pain, crps, etc? Or a need for medication management? Know how many times I’ve asked myself how can I without any? How can I do my routines? The ones that also hurt me. You may be thinking you can’t do  or use any of the above because you’re in too much pain or you simply can’t stand the taste of something. I know. I was on pain relieving medication since the injury that led to my CRPS began. Even before the diagnosis itself. Since day 1. January 26, 2001 and then I suddenly wasn’t anymore. Of course I was dependent. I’ve had the Medtronic SCS since 2006.

I’ve had many people tell me they’re on Oxycodone with secondary Hydrocodone, or an extended release with a another pain medication for breakthrough pain and how they’re still at a 10 in pain.

Imagine that 10 with opioid medication and my “any pain level” without. If you can truly imagine that for just a moment then you might understand why I didn’t want to live anymore and how I became adamant that I wouldn’t.

Food

I do cook more yet 7 days a week isn’t happening. I do make foods in batches to freeze so that my husband has something to eat. So that we both do on the days that cooking is problematic.  Homemade TV dinners.

I have a wheelchair, or should I say had. It’s on my patio ruined because I let it get rained on. I suppose in the back of my mind I still didn’t want it. I have a walker with a seat and breaks, I have it stored away, I have several cane’s, including 4 prong, I’m not using any of them. I lost my walking stick.

I love nature and being outside even if it’s only on my patio in my little pool. I’d encourage you to trade some of that internet time for nature.

When that pain, or any pain rises from any of my issues, I remind myself that I really am stronger than pain and that I survived for a purpose I had never considered before it all. A purpose that isn’t in CRPS Awareness anymore as it had been the 13 years prior. It’s not in finding a cure for something that most likely will never happen in my lifetime or yours but instead helping people live in the here and the now. Change cognitive beliefs that keep the pain state of mind active and replace those with a sense of healing, ability, and laughter. Laughter increases endorphins and endorphins reduce pain if even for only moments at a time.

It’s in raising your well being and supporting your progress instead of glorifying pain.

Moderate to severe physical pain will affect your emotions, your mind and it causes depression and overwhelming feelings of loss whether that be
a career, livelihood, the friends we once had, or who we were before we became chronic or intractable. It’s a constant cycle of stress and a vicious and a continuous 360 of remaining there. Fight or Flight is the stress response. The way you handle that stress response plays a main role in the ability to cope with physical pain. It’s been said for decades that RSD affects the sympathetic nervous system, the
sympathetic nervous is 1 half of the autonomic nervous system, the other part being the para sympathetic nervous system. The autonomic nervous system resides within the Central Nervous System. No wonder RSD is so out of hand. The Sympathetic nervous system is most commonly known as fight or flight. And more recently, fight, flight or freeze. If we’re in a constant state of stress, distress, our bodies regardless of injury or diagnosis won’t heal either. It can’t.

Understanding the stress response

Chronic activation of this survival mechanism impairs health

The news has reported from several media outlets that addiction and overdose deaths affects families and how those poor families are hurting because of the devastating impact it causes. Fair enough! Will they ever report how chronic pain affects families the same way? Or how our families suffer right along with us? I doubt it. Pain of any kind hurts families not just the pain of overdose that has little to do with any pain patient and everything to do with a choice. Even if the choice was made without the ability to understand the consequences. My choice to die and their choice to take too much. Fair? Suicidal ideations is trying to reason and bargain with pain (any kind) as is anyone who throws back that extra and dies from it.

One of my favorite books is Anatomy and Physiology Made Easy. A Concise Learning Guide To Master The Fundamentals by Dr. Phillip Vaughn. I have the Kindle Version. Available on Amazon. It’s an easy read. The other Anatomy and Physiology book I’m reading is a bit more complicated and more in depth. I would recommend the above title as a starting point for anyone without or without pain,  and as an informative tool regarding the human body, and as a stepping stone in order to understand possibility where possible is seemingly over.

So much can be done with a Yoga ball even from a bed.

(Initially this would have been either a Facebook Live or Periscope Live to share with you. When I’m able, I’ll still do a presentation and also demonstrate some of the techniques I use. IE: balls, dog toys, stretching, etc)

I’ve most likely left out other things I’ve done for myself.

Until next time. x

 

 

 

12

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I’ve talked about weightless water activity and being able to increase movement in my kiddie pool. Today I did 12 girl push ups without water. I reached 5 and I was like OMG that’s enough, but I went for 6 and then I told myself just one more so I did. I reached 8 and knew I should probably stop, but I didn’t. 10! Come on cry baby you can do another one. I did 2 more and 12 was it!

I’m so sore. My right side fingers started pulsating and that arm started throwing a fit. I took some Ibuprofen and then a nap.

Here’s my dilemma. My goal will need to always be 12 now +. Ugh! I know it’s new pain so there isn’t anything negative about it. I know the old pain will sometimes be instigated by pushing myself. I just don’t want to feel like if I don’t make the 12 I’ve gone backwards somehow. I’ve done this to myself several times before. Overdoing new efforts and increasing pain levels as a result. I also put on some Voltaren Gel before I fell asleep.

Last time I increased pain was from spinal movements in both my lumbar and cervical spine. Ouch! That was a little rough. It was about 5 weeks ago I think and lasted a few days. This is why I don’t have the time I want to have in other things offline or online. These routines and movements take up a fair majority of my days and I’m just whooped after.

How many want to even attempt doing things like these or even care to spend much of the day doing it? Hardly no one. Some won’t do 5 minutes a day. It wouldn’t have been my first choice for long term pain stability and the constant efforts in rehabilitating my own body wouldn’t have happened either if after having MLT, a sheet of paper was tossed at me with physical therapy therapies to try to achieve on my own that I couldn’t reach in all that horrible pain. . It’s hard!

Nearly everyone who goes to outpatient PT is sent home with exercises to perform as self therapy. Some people try, others throw it away, a few actually get through those at all and most don’t continue trying because expectations are set up for failure. Some people need help to even be able to move themselves, or parts of themselves. I never in a million years thought I would ever reach any of this. It could be that being forced to by not having any other pain care is what made that difference for me after the Gohl Method.

I don’t want to wither away from any pain or illness and I don’t want my future to be nothing but disabilities. I’ve accomplished something else too in it all. It’s a habit to do these stretches and movements each day without having to remind myself and it’s a habit even when I don’t feel well at all.

This is why I needed a year and why I may need another one before I can be active in advocacy again. I can’t worry about the internet so much right now, time spent here, would be accumulated aches and pains too.

Even those people who didn’t have any pain issues, the working class, end up having pain from sedentary positions. It’s why ergonomic work stations were developed in order to reduce complications in one’s body.

Reducing or removing stress factors are important also because the body itself feels stress as physical pain. Stress isn’t just in the mind. Relaxation, meditation, breathing exercises, a little yoga has all benefited me in the water and out of it.

Easier said than done, I know.

I’m hopeful that eventually energy will increase and I’ll get at least 5 decent years out of it all.

images - beach

 

 

Cutting Hair

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My anxiety has been a little high over doing something I haven’t done in many years. My husband asked me to cut his hair a couple of weeks ago. I use to cut his hair, our children’s hair, family, I did a few friends as requested. I use to do body piercings for others. I’ve pierced brows, I’ve done Monroe’s, I’ve done bellies, nose etc. That’s something I’ll most likely never do for anyone again. I’ve been asked, I’ve declined. My hand isn’t quite that steady anymore, but I think it’s steady enough to cut his hair.

His hair is really long right now. It’s close to being as long as mine. His hair is curly so the worse result is that any errors will be hidden in shorter curls or would need to be fixed by a professional.

Learning to reduce fears of trying again isn’t always easy, yet to try at all is rewarding. If I wasn’t trying some of these things again, I wouldn’t have ever gotten this far and I doubt I’d get any further.

In pain we stop doing the things that pain prevents us from. We don’t want to hurt more, we don’t want to instigate spreads, or flare ups, we stop using what hurts and we also stop it for the rest of our bodies and the result is deterioration, more diagnoses’, gastrointestinal issues and it’s not all a direct result of originating illness itself. It’s partially due to non use after the fact.

A few months ago, post MLT, the feeling in my middle finger returned, my index finger while arthritic has most of it’s feeling back. It’s just my thumb, inner palm and the part of my wrist that’s connected to my thumb that doesn’t feel fully.

work-in-progress-24027_960_720

I wish you all pain eased days and nights.

Movement

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I love being outside. It’s really peaceful. I did an hour and a half of water workouts. I don’t know yet if calling them workouts is fair. It might seem misleading. All I know is they are workouts to me and I’m going to be really sore tomorrow.

I woke early this morning, prepped dinner, and got a few other things done by the break of dawn. I had slept in late a couple of days in a row and needed to stop that before it became easier to do again.

I was breathing in the late morning air when I started thinking about summer time being over and it being colder outside. I thought that would be the perfect time to use my treadmill. I haven’t quite made it that far yet. I know the weightless water activity is helping more and more each day because movement itself isn’t as difficult. Not in the water that is. There is some difficulty at times not knowing if I should back off a little or continue pushing my threshold. Sometimes I think I’m suppose to be sore because it means I’m succeeding. I remind myself that I haven’t been in horrible pain for months as a result of movement and that I’m doing fairly well not being on pain medication or anti-depressants and that my determination to help myself exceeds any worrisome downfall physically or emotionally that hasn’t come back since my full on self maintenance began.

I love laughing, smiling, being playful, and funny. I dislike having not lost a single pound. Ha! Let me try to give myself some positive affirmations. But you did go down the pant sizes and you have increased muscle. Phew! I’m glad I did that. ~laughs

Anyway, I’m stuck on a series. I started Wentworth and then I started Orange Is The New Black. They both bored me and then Wentworth won for now. I’ve heard so much about Orange Is The New Black that I gave it a go. The first episode didn’t make me feel tingly inside with entertainment.

I’m heading back outside for another hour and then I’m going to be a little lazy and splurge on a couple of episodes before making dinner.

Tomorrow’s going to be a hotter one.

Sunshine

 

 

 

MLT Update

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It’s been 7 months since I first attended the Gohl Program and approximately 4 months since receiving Manual Ligament Therapy (MLT) the second time. The first time my Complex Regional Pain Syndrome Type 2 was minimized drastically in pain and symptoms. Remission of sorts. I was able to move and stand better. I could bend my toes and come up on my toes. I came home after the 5 days of treatment and utilized the techniques in stretching I had learned from Mr. Arik Gohl. I was able to bend over and touch my toes. I could still come up on my toes with more ease, and I could dance for moments at a time. These weren’t things I could do on the fly at any time of the day, but rather things I could do as I progressed or had an ability to do at any given moment. Or things I was unable to do at any given moment also.

My spinal issues had still been giving me trouble. Pain wasn’t so much in my back other than strain, but in my right arm, hand, fingers. Numbness, tingling, paresthesia. Medical Definition of paresthesia. : a sensation of pricking, tingling, or creeping on the skin having no objective cause and usually associated with injury or irritation of a sensory nerve or nerve root. I wasn’t only experiencing creepy crawlers but intense and moderate to severely painful buzzing that would begin with tightening and pique with an intensity often hard to bear before decreasing. A crippling sensation as my entire arm would lock up for the duration of the symptom. This occurred every few minutes all day and all night long for over a year. I had finally received a cervical injection for C6 and C7 Cervical Radiculopathy. I had the second injection the day before Arik Gohl and Monica Depriest of the Gohl Program picked me up for the healing retreat. I had never met them before.  I had also just learned 2 months prior that my CT results listed lost of disc height, Levoscoliosis, Spondylosis, Osteophytes and other spinal deteriorations. I’ve had bone spurs in my right foot and ankle for many years (2003 MRI), my spine I had no idea. Osteophytes are a bony outgrowth associated with the degeneration of cartilage at joints. I knew I had degenerative disc disease upon an imagining diagnosis in my mid to late 30’s. By January of 2016 I had so much physical pain compiled on me, and without pain related treatment or medications that I failed myself in being able to apply my coping strategies I had learned, wrote about and had shared for others years before. My CT had revealed C4-5-6-7 issues. I’ve known I’ve had Osteo for many years but I didn’t have treatment for it.

There wasn’t anything I could do for myself anymore. In that I mean I couldn’t get pain down enough to even try. I continued to dangle on the edge. I had always been willing to try. I tried so many times over the years for bilateral CRPS.

And then I had MLT.

The therapy literally saved my life.

It brought my pain down so much that I was able to become active in my own healing again. I had no one to rely on in healthcare, nothing to relieve pain, nothing to stop my head from spinning over pain. I lost the ability to survive. I went through motions of living, but I had already died inside.

To this day I haven’t stopped my routines in keeping my flesh, my body from becoming so restricted again. Fascia, all that fibrous tissue, connective tissue, bone pain, crps pain, spinal pain. I’ve kept my own pain levels stable.

Check out all these success stories

Gohl Program TV

Gohl Program Webinar – Chronic Pain

Gohl Program Webinar with Monica Depriest

Twinkle V Case Study Documentation

Twinkle V. – RSD/CRPS, Spinal DJD, Generalized Chronic Pain (Full- before and after treatment sessions)

I can’t even watch those videos because I don’t want to be that person. That’s a lot of pain to see myself in because I know how I really felt arriving there. I don’t even look like that anymore and it only took 7 months. I can’t wait until the 1 year mark which will be on my 49th birthday. I celebrated my 48th while attending the Gohl Program healing retreat in October of 2016. I hope that turning 50 becomes everything (or something) that my 30’s and 40’s should have been.

I know that it’s difficult for some to believe how far I’ve come in such little time. I also had a new injury to my right foot which is a month old today. It did cause a setback in my overall progress yet I retained progress in other areas of my body, mind and spirit during it’s healing time. Even in this injury I didn’t take or have access to any pain medication other than having used the topical Voltaren Gel, Epsom’s soaks and ice. Yes ice! I had not used ice since PT in 2002 for the fairly severe injury in January of 2001 which led to CRPS Type 2/Causalgia. This time began almost immediately desensitizing as not to allow a reversal of progress back to full blown CRPS symptoms. I began wiggling my toes the best that I could again. I’m on my road to recovering that foot once more.

My YouTube videos I’ve chosen intentionally to do raw and real for whatever day it is, moment of the day, pain, progress, humor, sorrow. Same with Facebook videos. There isn’t any reason to disguise myself beyond what I am at that moment.

This year is healing for me. I already dropped out of most advocacy related volunteering and awareness activities toward the end of last year. I’ve remained a Medtronic Patient Ambassador which I’ve been since 2015. I’ve attended training webinars, and I represent and support the Gohl Program.

Aside from these I just want to live, love and remain free right now. Find myself, learn myself, laugh and smile as much as this life can offer. 16 years of nothing but pain, disability, uncertainty, loss, lack of access to care, suffering and suicidal actions changed me.

While living keeps throwing it’s obstacles at me, I’m able to get through them better. Yes there are days movement is harder, of course there are moments when a pain rises for a few. While my Spinal Cord Stimulator leveled my legs out, my upper body had no relief. I lived at a 7 with 8-9’s too often. I fell over the edge at 10.

I haven’t been above a 7 at all. When I have been it was a combination of causing my own acute pain from rebuilding bodily deterioration, or from unrelated belly issues. I’ve held well between 2-5. 5 meaning issues not CRPS and my new injury was decently painful at onset.

Can you imagine living in nothing but physical pain and being able to survive it without medication management for pain? I have. Easy? Not at all. It’s been 15-16 months since I’ve had any. It’s turned out to be so very worth it.

I couldn’t have done this without MLT, Arik Gohl, Dr. Vero Lizarraga, Mr. Warren Gohl, Monica Depriest, Dr. Ed Glaser and the after care tools that I’ve continued to provide myself on a daily basis.

blessing-clipart-god-s-blessings-clipart-1

 

 

New Injuries After CRPS

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Tonight begins the 3rd day since I re injured my right foot. Any number of reasons could have been the cause. For one, I’ve been somewhat overdoing myself in healing, progress and maintaining pain levels. I refused to miss doing my stretches, or routine, even when I caused myself pain unrelated to any illness or injury. Pain that was a result of not moving or using muscles and bones for too many years. A good pain even if it hurt because no matter it was progress forward. I’ve re injured myself several times over the years and always with the same result in flareups and associated issues. Until the Gohl Program.

Another reason could have been that I’m so tired I was just absent minded to make the step I intended to, another could be I had just gotten off the slider not long before and my back was sore and my knees wobbly. That’s why I left it down in the first place. I wasn’t finished using it. I’m still fairly weak and don’t do big sets at once. I learned my lesson already. Mostly. I mis judged stepping over the bottom metal leg of the machine as I moved toward the doorway and as a result stepped entirely on it with all my weight, left hand grabbing the dresser to keep me from falling, and my foot was still on it. My entire right side was heavy on it.

While both the bottom and top is bruised it’s the bottom that’s worse. When I weight bear the knot on the bottom presses into the ground and the rest of the knot in the center pushes upward through to the top. (insert potty mouth words) but I’m still walking on it.

Normally people with RSD or CRPS wouldn’t use ice. I did. I’m getting rid of my worries and hurts and I can’t let using an ice pack be one of them. Not at this point. I didn’t have any adverse reactions. I did put a dry wash cloth between it and my skin. Voila! No problem.

Bending my toes isn’t happening right now. I’ve manually bent them. You know like how the 5 little piggies went to the market. Anyway, I’m not kidding.

I sometimes miss that quarter beat. In other words, I’ve never been a whole note. Ha!

Of course it’s something that’s a total bummer. Especially after having worked so hard these last 6 months.

It’s going to be most interesting to find out how long it takes to recover and be standing on my toes again.

As it heals from where it is now, I’ll keep working with my upper body and spine. Once the bruising and swelling comes down I’ll know better how much of a setback it may have caused. I do have a soft back support brace on now and it’s only so that my spine doesn’t shift as I’m unable to walk right. I’m minimizing anything that can get in my way of continued healing and anything that can cause the injury to want to get out of line.

I’ve come way too far and fairly fast after 16 years to fall behind now. I can’t stop, I’m obsessed, or maybe possessed. Both?

I helped my husband carry in bags from the car today when he asked for my help. That could go 2 ways. Either why would he even have asked knowing I hurt myself or I could be glad I got myself up to do it even so. I could have said no? I’ll stick with being glad.

I’ll re ice again today. Yep, I’m starting over it a way, but I’m not starting all over from last year. That foot has had tendons and ligaments torn off bones, chip fractures, entrapment’s, surgeries, scars, dings and much more. CRPS, Achilles tendinitis, arthritis, osteo, heel spurs, plantar fasciitis, etc and so forth.

Looking forward to learning how fast I can reverse and heal from another new injury to a CRPS extremity using post MLT routines.
I’m keeping a log and photos. I’ll share any delays or progress.

All I need to know now is who has the voodoo doll?

220px-Poupée_vaudou - image source- wikipedia

Review – Gohl Program | Part 4

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Review – Gohl Program | Part 4

believe

It’s not yet been 6 months since first attending the Gohl Program healing retreat. Let me begin by saying that your journey is yours in pain; my journey is now mine from pain. Nearly all of us share, raise awareness, learn, teach and offer support to others. Many belong to or own groups, websites, blogs, are a not for profit or are a part of nonprofit organizations or businesses doing the same. My main goal is sharing my progress and healing after receiving Manual Ligament Therapy to proffer hope where hope had no longer existed for me. To share this option for chronic pain relief, testimonials, webinars, case studies, until people believe impossibles are possible. While everything I’m doing now may not be directly related to the Gohl Program it is because of it. An example would be the use of fresh herbs for their medicinal properties instead of the use of Over the Counter medications. The Gohl Program didn’t tell me to go home and do these things. I chose to continue the holistic course I had already begun as part of my overall healing experience.

On February 26, I shared to Facebook:

February 26 •
#MLT #Fact = In what became 4 months (2 days ago) since my first treatment session at the Gohl Program Arik Gohl, I’ve been able to:
1. Move my toes
2. Bend over to touch my toes
3. Raise my legs
4. Walk without assistance, or needing to stop a few steps later.
5. Walk to the store (A couple of blocks, each way)
6. Dance
7. Sleep better
8. Re quit Gabapentin and Cymbalta
9. Squat
10. Adjust my spine to better alignment when sitting, laying down and standing.
11. My Spinal Cord Stimulator has been off since hours before my first session on October 24, 2016.
12. Did I mention dance?
13. Regain strength in my upper right extremities. Raise my arm, move my shoulder.
14. Since my last treatment in January of 2017, I’ve been able to regain better use of my right hand and fingers.
15. Belly flares (Diverticulitis, Gastritis, Kidney, Liver, etc, general inflammation and associated pain) has been reduced in the duration of time and discomfort associated with those diagnosis’ and symptoms prior to treatments.
16. I skated with my Grandson for the first time in his 11 years of life on February 18, 2017.
17. I’m not prescribed opioid pain relievers (nor have I had any since February of 2016)
18. Mr. Arik Gohl, Mr. Warren Gohl, Dr. Edward Glaser, Dr. Veronica Lizarraga, Ms. Monica Depriest, the Gohl Program and MLT literally saved my life.
19. I’m living 16 years later without pain being a constant physical and emotional reminder of what I couldn’t do, shouldn’t do or would never do.
20. I’ll never quit again.
~Twinkle V.

On March 4th:

March 4 at 12:57am •
After a fairly intense moment with the dad Mr. Warren Gohl, Arik Gohl’s father, who I’ve been blessed by, I left my emotional garbage in a rock filled parking lot in Tennessee. I left the beginning, I left iPain, I left my Facebook deactivation and the reasons why, I left advocacy and awareness for which it was, I left the medical mistakes, I left the pain I caused my children, I left thinking I wasn’t a good wife anymore, I left the hurt of believing I would never be anything more than I was and that I wouldn’t go any farther than I had. I left the gossip and the whispers. I left caring too much. I left being a pain person. I left the end of it all and a new beginning was born. Because of that my path was paved in a new direction, and if I worked for it, I could be free of all that it had been and find peace in a forever where pain wasn’t my captor anymore, but instead a reminder that if I hadn’t endured all that I had physically and mentally, I’d never be right here, right now.
There’s no other place I’d rather be.
Can’t never could do anything anyway.

On April 3rd:
April 3 at 7:50pm •
There has only been 4 years scattered among the last 17 that I haven’t had major surgery, procedures, or blocks. There’s been several times over the last few years that I was cut cold turkey off of medications and went through hard withdrawal. No opioid withdrawal, just an increase in pain as a result. I’ve had other major surgeries prior to #CRPS, one of which kept me out of work for 3 months. I never filed for State Disability. I went back to work as soon as I was cleared to. After #CRPS I still fought by butt off to beat it enough to manage and the secondaries began and my entire being was overcome with all of it. Finally dropping out of the healthcare system was the best thing I ever did. No one asked me to, no one told me to. The stress itself of waiting on authorizations, scheduling, how to get to an appointment, who to rely on, all interfered with more than they helped my ability to cope. And I know many of you go through the same thing. We dwell on the unknown and that in turn raises physical pain. Physical pain then instigates stress and emotions and you can’t ever get out of it. Until you understand that you can.
No one wants to believe in anything other than surgeries that rarely heal us. Especially if we can’t do the followup care for ourselves for them to be successful. Few want to believe in anything other than pain medications and I know if it’s all you have, it’s all you have to survive and I understand that more than you may realize. People lose themselves to pain. You all have one way or the other. Few are taught basic techniques for self care, and healing,
I talk about stretching and people freak out. I talk about the decrease in my own pain and people think I couldn’t have ever been as they are. I talk about progress, everyone wants to know how, but then can’t believe in it. Not even as an option to share.
If you can suspend your disbelief long enough you might get at least part of it in the overall meaning of what we’re all capable of doing for ourselves or with the assistance of a caregiver until we can. When you have an open mind, you learn. Closed minds leave us right where we are in any circumstance.
I was heading for reconstructive spinal surgery. I was already scheduled for banding ligation, and I cancelled my last cervical spine injection.
I chose to go off the last 2 medications I had only restarted the month prior to receiving #MLT. The program didn’t ask me to, or imply that I had to. I quit Gabapentin so that I could feel any changes without something overshadowing it.
I quit Cymbalta so that I could just be me.
How could I do all this?
GohlProgram.com
Since the first post containing the 20 points, I’ve also began using a stationary bike, I worked myself up from light stretching to being able to do another exercise/stretch to strengthen my neck, shoulders, back, stomach, legs, arms and hands. These stretches and techniques were directly taught to me by Mr. Arik Gohl and are not what is taught or expected in traditional physical therapy. Traditional PT is often unrealistic with exercise or stretching prescribed that is beyond an expectation to succeed. Rather, most patients are set up to fail and because of this many never recover.

On the query “Do tendons feel pain”
Answer: Most people feel a general achiness, stiffness, and pain. Symptoms can occur throughout the body. Any soft tissue (muscles, tendons, and ligaments) may be affected.

There are over 900 ligaments in the human body and more than 100 muscles, tendons and ligaments in the foot alone.

If you can imagine then that when our feet are properly aligned and supported solesupports.com and when our feet and body is relieved with Manual Ligament Therapy that chronic pain conditions can be eased, cured, or that remission really is possible even in the most complicated cases.

I said cure didn’t I? Cure the word that’s become taboo when it comes to the supposedly incurable. Trust me, if someone threw around the word cure to me, I probably wouldn’t have believed, but I would have looked into it. If I knew someone that went from 0 to living I’d be watching and listening intently on their progress, setbacks, or healing.

I did that with Ketamine. I seen results and so I wanted to for myself. I just never had that opportunity. Now I’m glad that I didn’t. 1. I would have had another chemical in my body. 2. I may have come to rely on it. 3. Its hard having relief of any kind and having it either taken away or become unavailable again. With the Gohl Program there isn’t any taking away because it’s up to you whether you do or don’t after the treatments.

I imagine that I’m in a time where healthcare as we know it now doesn’t exist. I imagine what I would do for myself to live through colds; flu’s, promote healing in injuries, acute or chronic pain and I remember that it wasn’t even so long ago that my own pediatrician who was also my children’s pediatrician always suggested Ginger ale when we were sick. Something I rarely or if at all hear of anymore. Ginger, or ginger ale, relieves colds, flu’s and pain. I use ginger often for its anti inflammatory effects.

I imagine that if I wanted to live through the worse I’d have to find a way by being responsible for myself and my own well being whether it be living off the land, using home remedies, and moving myself even when it hurt that I could survive.

I’ve found that way through the Gohl Program. I hope I can show you the way, too.
Part 1 – https://rsdadvisory.com/2016/10/31/review-gohl-program-part-1/
Part 2 – https://rsdadvisory.com/2016/11/06/review-gohl-program-part-2/
Part 3 – https://rsdadvisory.com/2016/11/08/review-gohl-program-part-3/

Advocacy and Awareness: CRPS

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sad_facw_behind_a_smiling_face_by_mudabbirali-resized

Image Source: Sad Face Behind Mask by Mudabbirali

I had always maintained a level of balance when raising awareness for Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia. My role was to provide accuracy over inaccuracies. Identifying, evaluating and sharing diagnostic criteria for the diagnosis of CRPS. In addition was the difference between CRPS and CPS (Chronic Pain Syndrome) Chronic Pain Syndrome is a compilation of chronic pain complaints which can include RSD or Causalgia, yet is NOT a CRPS itself.

Complex regional pain syndrome occurs in two types, with similar signs and symptoms, but different causes: Type 1. Also known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn’t directly damage the nerves in your affected limb.

Complex Regional Pain Syndrome Type 2 (CRPS Type 2) is a severely painful response to a peripheral nerve injury. CRPS Type 2 is characterized by severe, burning pain affecting a specific area as a result of the nerve injury.

Approximately 90 percent of people with Complex Regional Pain Syndrome have Type 1.

The McGill Pain Questionnaire 

McGill Short Form Pain Questionnaire

McGill Pain Questionnaire (MPQ)

The McGill Pain Index 

The McGill Pain Questionnaire, also known as McGill pain index, is a scale of rating pain developed at McGill University by Melzack and Torgerson in 1971. It is a self-report questionnaire that allows individuals to give their doctor a good description of the quality and intensity of pain that they are experiencing.
This index is subjective. Subjective means that your pain and symptoms are based solely on what you define them to be. It contains no objective findings to establish any certainty whatsoever.
This index leads you all to believe you have the worse pain disease known to man. Above Cancer. The index describes “Causalgia” which the majority of the people with this syndrome do not have.
Upon reading this many of you will suddenly decide that you have type 2. If you didn’t have type 2 there would be less reason to be incurable and in so much pain.
Do you know how many people over the years who have been diagnosed with RSD suddenly changed their own diagnosis to Causalgia upon learning the difference? Too many.
This is why the research and documented statistics are flawed. This is why the healthcare system fails to help us and instead classifies many of you with Chronic Pain Syndrome or Somatic Symptom Disorder.
According to the respected Dr. Philip Getson “Current estimates suggest that there are between two and ten million patients with this disorder worldwide. It is my personal belief that if you subscribe to the theory that fibromyalgia is in fact not a distinct and separate entity but rather a sub-sect of RSD (as I do), that number can be as much as five times higher.” http://www.drgetson.com/reflex-sympathetic-dystrophy.html
This is because RSD and Fibromyalgia share similar subjective results (trigger points/pressure points) and complaints in addition to some objective shared findings. Overactive nerves instigated by stress. The Fight or flight response.
I can assure you that Complex Regional Pain Syndromes Type 1: Reflex Sympathetic Dystrophy and Type 2: Causalgia can be drastically relieved and has the potential to be curable without drugs, sympathetic blocks, modalities or implantable devices.
I can no longer ascribe to the belief that CRPS is without possibility in healing. I’ll not tell people they’ll never get better, and I won’t be sharing the misinformation that advocacy groups expect of me. What I’ll share are the facts that surround this misunderstood syndrome and how we never have to end up disabled, sick, emotional and grieving over something that has a chance early on for an immediate remission, without years of failed treatments and medications and doesn’t ever have to lead to an end of no return.
I think I’ve proven that.
~Twinkle VanFleet, GohlProgram.com