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.

 

 

 

 

 

 

 

Advance Directives – End of Life Issues – California Medical Association

In California, Advance Health Care Directives are the legally recognized format for “living wills.” An Advance Health Care Directive enables individuals to make sure that their health care wishes are known in advance and considered if for any reason they are unable to speak for themselves. An advance directive also allows a patient to appoint a health care “agent” who will have legal authority to make health care decisions in the event that patient is incapacitated, or immediately upon appointment if the patient expressly grants such authority.

For more information, see CMA’s Advance Health Care Directive kits. The kits, available in English and Spanish, include legal forms and wallet identification cards, and answer many of the most frequently asked questions about these issues.

Frequently Asked Questions About Advance Directives

The following are answers to commonly asked questions about Advance Health Care Directives.

What is an Advance Health Care Directive?

An Advance Health Care Directive is the best way to make sure that your health care wishes are known and considered if for any reason you are unable to speak for yourself. Completing a form called an “Advance Health Care Directive” allows you, under California law, to do a number of things:

First, you may appoint another person to be your health care “agent.” This person (who may also be known as your “attorney-in-fact”) will have legal authority to make decisions about your medical care if you become unable to make these decisions for yourself. Although you are not required to appoint a health care agent, CMA recommends that you do so. Appointing a particular person as your health care agent ensures there will be someone you trust to actively participate in the decisions surrounding your health care.

Second, you may write down your health care wishes in the Advance Health Care Directive form, for example, a desire not to receive treatment that only prolongs the dying process if you are seriously ill. Your doctor and your agent must follow your lawful instructions within the limits of generally accepted health care standards. Third, an Advance Health Care Directive allows you to express your wishes about organ and tissue donation.

Is an Advance Health Care Directive different from a “living will”?

The Advance Health Care Directive is now the legally recognized format for a living will in California. It replaces the Natural Death Act Declaration. The Advance Health Care Directive allows you to do more than the traditional living will, which only states your desire not to receive life-sustaining treatment if you are terminally ill or permanently unconscious. An Advance Health Care Directive allows you to state your wishes about refusing or accepting life-sustaining treatment in any situation.

Unlike a living will, an Advance Health Care Directive also can be used to state your desires about your health care in any situation in which you are unable to make your own decisions, not just when you are in a coma or are terminally ill. In addition, an Advance Health Care Directive allows you to appoint someone you trust to speak for you when you are incapacitated.

You do not need a separate living will if you have already stated your wishes about life-sustaining treatment in an Advance Health Care Directive. The Advance Health Care Directive form in CMA’s Advance Health Care Directive Kit includes an optional living will statement that you can select if it reflects your desires.

Is an Advance Health Care Directive different from a “Durable Power of Attorney for Health Care”?

The Advance Health Care Directive has replaced the Durable Power of Attorney for Health Care (or “DPAHC”) as the legally recognized document for appointing a health care agent in California. The Advance Health Care Directive allows you to do more than a DPAHC. An Advance Health Care Directive permits you not only to appoint an agent, but to give instructions about your own health care. You can now do either or both of these things in the same document.

Additional questions, answers and kits –

via Advance Directives – End of Life Issues – California Medical Association.

Commentary-

If you haven’t already, I urge you to complete your directive. Your end of life choices will be honored and upheld. You have the opportunity to add additional wishes regarding your healthcare. Choose your agent(s) wisely. That person will uphold your hopes in the event you are incapacitated for any reason, short term, or long term. Your written word really is your living will.

You can also register your Directive with the Advance Health Care Directive Registry at: 

http://www.sos.ca.gov/registries/advance-health-care-directive-registry/

Please keep a hard copy in a safe place if you haven’t used the registry.

You may also want to consider:

Donate Life California

Mission Statement

“Donate Life California saves lives by inspiring people to sign up with the state organ, eye and tissue donor registry”. – See more at: http://donatelifecalifornia.org/

“One person can save eight lives and enhance 50 others through organ and tissue donation”.