The Simpler Things

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.

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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!

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12

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.

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Cutting Hair

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.

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I wish you all pain eased days and nights.

Sunshine and Nature

I’ve been spending a lot of time outside in the sun in a little kiddie pool soaking up sunshine and nature. I’ve been using my pool to my advantage by doing weightless water movements in order to continue strengthening overall weakness in my body and to keep pain as minimal as I can.

I’m using chia seeds as a holistic and natural approach to pain relief. It’s anti-inflammatory and antioxidant properties have been helpful. I take Magnesium daily also.

I’d cut my internet time down considerably compared to the last several years in order to just take care of me for a little while. I wanted to share love and laugh instead of post only about pain and while it still included it I meant to keep it less than. I wanted to heal myself the best that I could with what I endure because I still don’t have pain management, use any form of pain medication, or receive any other kind of treatments or therapy related to pain.

“Sometimes good things fall apart so better things can fall together.” ~Marilyn Monroe

I wanted to share progress in accomplishments since receiving MLT and from continuing to utilize the techniques that I had learned at the Gohl Program. I wanted for people to know I understood their pain because my own physical problems have been many. I wanted you to know there’s possibility in what we end up believing is impossible.

I didn’t want to feel responsible for things I either couldn’t or didn’t provide other people these last few months or more.

As of last night my Facebook is deactivated again. For how long I’m not certain. Maybe a couple of days, maybe longer. My Stronger Than Pain page should have shifted to my son as the sole administrator.

It’s time to head outside for my daily dose of sunshine and nature.

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Introducing Stronger Than Pain as an upcoming NPO for Suicide Prevention and Relief

On June 7th 2017, my son announced that together we’ve began the process of becoming a non profit organization. Our mission is suicide prevention and relief, techniques, support and services with mental health awareness at the heart of our reasoning.


After a considerable amount of discussion, I have opted to begin the process of starting a 501(C)(3) Non-Profit Organization with the help of my mother Twinkle Our mission will be suicide prevention and relief along with mental health awareness. We have begun the process of filing paperwork with state and federal. We lose over 40,000 people a year from suicide, over 5,000 of those are Veterans, over 250 are First Responders, and our goal is to help lower that number. Please like our Facebook page StrongerThanPain as we are currently working on building our website. Please email Info@StrongerThanPain.Org for any inquires.


While I chose not to form an NPO for chronic pain and RSD/CRPS over the years because I appreciated being apart of others as a volunteer, I’ve opted to do so with my son.

“Do not go where the path may lead, go instead where there is no path and leave a trail.” ~Ralph Waldo Emerson

Mental health is at the core of every physical ailment and physical decline, illness and disability becomes a hardship to mental stability.

Suicidal ideations, attempted suicide and suicides themselves affect our soldiers, first responders, physicians, chronic pain patients, at risk youth, LGBT-Q, all of us.

We want to help you believe that who you are is enough, what you do is enough, we want you to know that you’re loved and appreciated and we want to help you either stay or become stronger than pain.

We want to assist you in healing your body, mind and spirit. We want to help you overcome not just emotions but obstacles too.

As we build our brand and develop our website, we’d like to invite you to like Stronger Than Pain on Facebook.

Follow us on Twitter

Or Email with any inquiries, suggestions or for interest in joining us at: info@strongerthanpain.org

Every donation counts toward helping us help you, every like is worth just as much.

http://strongerthanpain.org/donatenow/

We’re proceeding through the proper steps and our initial paper work is currently being processed for filing with state and federal agencies to obtain our status.

While our website is currently under construction and we’ve only just begun we want you know that we have.

Stronger Than Pain Logo

MLT Update

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.

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Fine Lines

There can be such fine lines between doing and not doing, trying and not trying enough, managing time and wasting it, finding balance and not balancing at all.

I’ve driven now twice since not having drove but a handful of times in 17 years. While both times were only a few blocks away it is a starting point. Next time I’ll turn left and go down farther to the shopping center about a mile from home. Most likely repeating that quite a few times before trying further.

I’ve hit a few lows in wondering if all this is just too good to be true. This is because in order to maintain pain relief from the original CRPS Type 2 diagnosis and the several secondaries along the way, I have to do physical routines daily in order to keep it from ever being what it had become. These routines can cause their own pain because of the lack of activity and movement as a result of the injuries and illnesses that either initially or had eventually overcame me. Many of those things that I did to comfort myself from reaching the edge were some of the same things that were to my own detriment. Hanging my legs off the bed in order to try to sleep because my feet and legs were either too swollen, allodynia, hyperalgesia, burning etc. Using pillows, several, in order to prop myself into positions to ease pain, but at the same time it taught my body to develop even more damage.

Ever tried. Ever failed. No matter. Try Again. Fail again. Fail better. ~Samuel Beckett

We aren’t taught how to be able to care for ourselves in simple manners that are the greatest of all. We’re told go exercise, lose weight, quit smoking (if you do) and that’s about it anymore. Great advice, but it’s only advice. There isn’t any teaching in it and people leave still wondering how, how in all of it. If you have chronic pain of any type it’s because something in you, illness or injury has lasted beyond 3 months (used to be 6 months for that classification).

Some people do get the pain medications, the opioid management, pain management, lumbar or cervical block injections, procedures etc. Yet none of these get people healthier again. None of them teach living with pain. They either disguise pain awhile, fail, or side track a person from learning how to themselves. Other medications such as SSNRI’s and Anti Seizures such as Cymbalta and Neurontin are over prescribe, handed out like candy and more adverse than the opioid itself. I promise you that. Opioids taken responsibly is less a problem than the lifetime problem that stays with you long after getting off those other types. We may have natural opioid receptors in our brains, but our brains (and minds) aren’t meant to be altered to the point future damage.

I’m not anti opioid.  I’m anti leave someone where they are when there are other options in relief that aren’t suggested or believed in by mainstream western medicine. I believe in CAM or Complimentary and Alternative Medicine. I believe in the Gohl Program. I believe in Integrative Pain Medicine.

Yet these services are rarely offered, or are not covered by insurance. I myself was denied for Acupuncture my second year into all this. (2003). I could have been cured, or in remission right away, but instead we keep people bouncing the healthcare systems, costing billions, left disabled, unable to contribute to society, getting sicker when we have the capability to get people back into their lives. If we do, even more billions are lost in profits, revenues and work for the working class. Damned if you do, damned if you don’t and that’s the world we live in. If it’s not about me it’s about you. Will it ever be about us? I already know the answer to that.

I’m glad that The Academy of Integrative Pain Management previously The American Academy of Pain Management has merged the concept of healing by both standards of care. I’m thrilled to have been a State Pain Policy Advocacy Network Leader (SPPAN) which is a project of of the AIPM/AAPM for several years. I’m happy to have been former California Ambassador, Executive Board Member, Advocacy Director and Healthcare advisor for the International Pain Foundation 2011-November 2016. I’m happy to still be a Medtronic Patient Ambassador. I’m glad to have represented iPain as a member of the Opioid Prescribing Taskforce via the Medical Board of California and for being 1 of perhaps 3 patient advocates who were apart of the Revised Standard Guidelines for Prescribing Controlled Substances For Pain. I’m happy that I attended with and testified on behalf of pain patients with the California Medical Association (DeSaulnier)

I’m not happy that I fell hard in the midst of the CDC Guideline for Prescribing Opioids for Chronic Pain — United States, 2016 as they were being implemented, recommended and circulated. The Guidelines for Prescribing Opioids for Chronic Pain CDC. I’m blessed to be part of the public record, written and on the last call pertaining to the Guidelines. The call that determined whether or not to enact the recommendation. Which had been determined before the call had ended in case you didn’t know.

Instead of saving lives and allowing physician’s to care for their patients under their own oath it instilled fear in providers to prescribe or even address pain at all. I do not care that the Guideline’s were meant for primary care doctors because it caused fear for all doctors including pain management specialists.

I have to be a responsible patient, yes? I have to be in compliance, yes? Yet there is little to no responsibility or consequences for non compliance in others or those who believe they are above anyone else. Everybody’s pain day will come, if even by old age alone.

I’ve lost my reputation online, but offline my words are different. I’m different. This doesn’t mean I’m a different person it means that perceived perception, written content and context is taken as you will. Believed or Imagined. Generally just a fantasy in your own minds.

I’m diverse.

Online I no longer care. I’m both polite, knowledgeable, caring and I’m blunt, potty mouthed and adverse. Yesterday was the 1 year anniversary to the second time I attempted suicide as a result of pain and errors and not just my fear in it all, but the fear in overdose, the fear to prescribe, the fear to keep your medical licenses, the fear of the DEA, the fear of scrutiny, the fear to take care of your own families and I actually understand. I actually feel your side of it. I feel you when you’ll do almost anything to maintain your reputation even if you’ll lie to do it.

When you can feel my husband of 31 years side of it, or my 3 children’s broken heart in it.

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Maybe I’ll care again the same way I used to. Though I hope not because I really cared too much about everyone else, what ever one else needed, or wanted. Right now it’s all about me and overcoming the challenges of living through what I can’t ever change for me in this lifetime, or what I can never take back in the option of suicide, but I can still help change it for others.

They are fine lines, after all.