Dear Doctor

Dear Doctor,

I hurt today. The weather is changing and my knee is hurting. Just now, I caught myself sitting at my desk with my leg crossed over the hurt leg. I say hurt… I hurt it back on Feb 9, 2012. Since then, I’ve had exploratory surgery; MRIs; tests; therapies; medications; and the specialists can find nothing wrong from which the diagnosis Chronic/Complex Regional Pain Syndrome (CRPS) previously known as RSD is an appropriate diagnosis for the symptoms. I realize you do not understand my disease, the pain I am experiencing or how simply making a few changes to my diet along with non-toxic cleaning and care products improved my overall pain you’ve or another doctor been fighting for years.

As I sit here I do so with an invisible illness where the pain I am experiencing sitting with my legs crossed over one another hurts nowhere near what I have experienced before as a daily level of pain, I am trying to figure out what I should and shouldn’t say to you to get you to understand what I am living through with out you thinking I am a pill seeker. I am talking pain that causes me to vomit because you can only be unconscious from the pain for so long, and no the antiemesis medication you gave me that smells like a solvent when I open the bottle… No, it doesn’t help… I have lived with this intense pain for-days-on-end and to change my positioning to another position that is no more or less uncomfortable than the chairs in your office, is only natural. I just want a little relief.

Try to understand the greatest improvement for me came from stopping all the medications but one  the doctors have had me on and implementing lifestyle changes and to be honest this sounds crazy to me but the proof is in the pudding. I am asking you to, please, stop judging and simply listen to me, to wait until I’ve finished speaking and take your time to think about what I just said before you reply. I am sure you are aware that I am already judged by the rest of the world because I do not look sick, nothing is obviously broken. Moreover, I’m judging me. Isn’t that enough for now? You must realize I sit here in fear of the words you may write in my file should I challenge you. What is even more frightening is that you won’t allow me access to my information because though it is mine and I should have access to it, I don’t because you own the paper it is printed upon of course I could purchase my records from you because the $290 office visit won’t cover the cost.

What’s worse no one has thought to tell me I am grieving the loss of me and what could have been. I could have been working on this and helping myself through it rather than kicking myself for feeling as I do over it. Doctor, I need empathy from you, along with information about my disease and above all else honesty. Not your judgment or your opinion, I’ve hired you to provide me, my care-team leader, with the data with which to make an informed decision on what to do next. I realize some people come to you and would rather you just told them what to do… I am not them.

Sincerely,

Your Patient Pain

Step 02 of 10

Get Involved

The American Chronic Pain Association states we should next look at how we can become more involved in our care. Not that we aren’t as it is, but rather than being taken for the ride you get to be behind the wheel. It is important to remember that an individual should take an active role in their own recovery. As such you are the team leader of your care team, learn all you can about your condition. Study about its past as well as its present to understand the future of how you wish to proceed.

I choose to become more involved with my care because I was being overwhelmed and consumed by my care. Because of this, I choose to embrace the less medically-invasive route using what modern medicine considers fringe science where whole natural foods are the roots of medicine. The ideas that rather than chemically synthesized compounds the oils distilled from the organic, naturally grown plants are just as powerful if not more so than what the pharmacy hands out.

Learn more about patient-centered care visit OPEN LEARN for free learning from The Open University.

Resources:

N.a (n.d.). American Chronic Pain Association – Ten Steps. Theacpa.org. Retrieved from https://theacpa.org/Ten-Steps

Latest Pages Professor Jan Draper12 (n.d.). The importance of person-centered approaches to nursing care. OpenLearn. Retrieved from http://www.open.edu/openlearn/body-mind/health/nursing/the-importance-person-centred-approaches-nursing-care

Randomly Speaking 01/02

“No matter where you go there you are.” Ever wondered who your worst enemy was? Ever wondered why no matter where you went, drama always seems to follow you? Do you believe everyone around you is the cause of your problems or responsible for how you are feeling? Have you looked at yourself as the problem and questioned how you might change that? I have…

Grandparental Wisdom

Around our dining table while growing up the conversation typically turned to my great-grandparents, my granny wanted to pinch pennies at the grocer’s because it was the only variable spending in the budget.
My great grandfather sternly refused to budge from expecting a full table of quality food because it was medicine. See, he believed that money was being spent on healthcare one way or the other, through the grocer and food or the doctor and remedies.
 
Because of this in the back of my mind, I choose to start with my diet. I knew this wasn’t for a temporary amount of time either. It would be a lifestyle change

Pain & Ten Steps

Let’s talk about pain baby! Let’s talk about you and me! Oh, I can almost hear a tune to that and then… OUCH! Reality sets in and I am reminded I live with pain. Not your normal, if there is a such a thing as normal, pain. No, I live with level 47 pain.

Pain Control It or You

Funny story here… Because I did not want to give myself a diagnosis I never researched what Chronic/Complex Regional Pain Syndrome (CRPS) once known as Reflex Sympathetic Dystrophy (RSD) and Causalgia was until some point in late 2015, almost 4 years after my injury date. See early in my case, I was in my attorney’s office being deposed by the opposing counsel when the lead attorney asked me about my pain, he asked me to describe it to them. As I mentioned above, I live with what I perceive as #level47pain247 or I did at one point. We will call this the height of my pain. The gentleman turns to me looks me square in the eye and wanted to know where I got that number from, where I had read it, where I had heard it.

What’s so funny about that, you ask? Oh, I’m sorry you must be reading this article by mistake, but I’m glad you are here… Please make yourself comfortable and allow me to explain. See, there is this pain rating scale called the McGill Pain Scale and it goes from 0-50. It was developed by Dr. Melzack at the McGill University in Montreal, Canada. The scale is used to evaluate a person who is experiencing significant pain utilizing it over time to determine the effectiveness of pain management interventions

Today my pain is not as bad as it was, I still have my bad days but who doesn’t. The difference is today I have regained overall functionality I thought lost to me. How? You wonder, let me share that with you over here on Lifestyle Detoxification blog site where I will be posting the tips and trick I find to help me feel better than I did where we will explore the Ten Steps according to The American Chronic Pain Association and I’ll leave my opinions out of it. Hope to see you there. (Click the colored hyperlink above to go to the page with the first step of ten total in this series.)

Step 01 of 10

The American Chronic Pain Association’s

Ten Steps: Step 01

Understand there are stages of processing the grief of having a chronic illness. Moreover, understand its invisibility makes it no less painful. As well, there is no particular order in which you will experience these emotions to which degree I cannot state if you will nor how many times you may revisit one or more of the stages below.

“Accept the Pain”

“Learn all you can about your physical condition. Understand that there may be no current cure and accept that you will need to deal with the fact of pain in your life.” ~A.C.P.A.

STAGES OF ACCEPTING ILLNESS

  • SHOCK/DENIAL: 

Denial happens as the shock sets in. An individual may experience feelings of dismay, bewilderment &/or confusion.

  • ANGER: 

From which questions of “Why me?” or “Why did this have to happen to me or my family member?” “Is it possible to keep going on?” “Why won’t the doctor do something?!”

  • BARGAINING: 

Let’s make a deal! Depending upon your spiritual beliefs one may start making deals with God or suddenly begin to outwardly profess one’s belief in an effort to make good for failing to in the past.

  • DEPRESSION: 

Not everyone experiences every warning sign — some people will experience a few signs, while others, many. An individual may experience any number of the following signs and symptoms of depression of which the severity will vary from person to person as well as over time. Signs to look for include but are not limited to, being persistently sad, anxious, or empty mood. Feelings of pessimism, guilt, worthlessness, helplessness, a loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex. Decreased energy, fatigue, being “slowed” such as a difficulty concentrating, remembering, or making decisions. Insomnia, early-morning awakening or oversleeping are also signs of depression. Appetite and/or weight loss or overeating and weight gain. Thoughts of death or suicide; suicide attempts. Restlessness, irritability,  &/or persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders, and chronic pain

  • ACCEPTANCE: 

While many do reach acceptance, at least for some period of time. They are not happy about the fact that their family has been affected by chronic illness, but they adjust their expectations and get on with their lives. Chronic illness no longer has “center stage” in their lives. It is just one of many aspects of their lives. Some people never reach this stage. Their lives become permanently sidetracked by the other stages: denial; anger; bargaining; &/or depression.

Steps toward acceptance: 

  • Learning everything you can about your condition.
  • Learning that you are responsible for your feelings no-one can make you feel angry, mad, sad, happy.
  • Learning that only you can fix yourself
  • Learning to accept yourself and others as s/he is now, not as you wish or think s/he would be.

What acceptance does NOT mean:

  • Tolerating behavior that is dangerous, too disruptive, or unacceptable to you or others in your family.
  • Abandoning yourself, a relative or a friend.
  • Giving up hope.

Acceptance could help you to

  • Be more empathetic toward others.
  • Be appropriately involved, but not overly involved.
  • Become less intense.
  • Set limits so your needs are not neglected.

 

Click here on the fourth of January for the next step on our journey, step 02.

(Note: As soon as the article is written and is published… this link will work.)

References

N.a (n.d.). American Chronic Pain Association – Ten Steps. Theacpa.org. Retrieved from https://theacpa.org/Ten-Steps

http://www.apa.org (n.d.). Coping with a Diagnosis of Chronic Illness. http://www.apa.org. Retrieved from http://www.apa.org/helpcenter/chronic-illness.aspx

Melzack R (n.d.). The McGill Pain Questionnaire: major properties and scoring methods. – PubMed – NCBI. Ncbi.nlm.nih.gov. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/1235985/

A Time of Reflection

As my health and my pain associated with my health has improved over the past two-plus years I’ve come to understand much of the pain I was experiencing was because of my exposure to various agents within my environment. Because of this, I am on a journey and I am asking others to travel the path with me. Hindsight being what it is, failing to personally document visually or blog my hardships from the beginning was a mistake though an unavoidable reality.OldLongSyne

Yet with the new year comes new opportunity and as I am now no longer hindered to share my path I ask you to please remember I am not a doctor, nor have I ever been and I don’t play one on tv (or Youtube for that fact.) I do have a youtube channel where I am trying to express the level of independence I’ve regained since the height of my affliction with Complex/Chronic Regional Pain Syndrome aka CRPS through what I believe to be as a result of my lifestyle changes as they are not due to any invasive medical procedure or medicine I’ve been given in the past.

I am no different than anyone else who’s searching for a better quality of life. I am just finding it a whole lot less expensively than the typical CRPS patient trapped within the medical cog does because I am no longer chasing my tail trying to find the next medical cure for a condition that is, in fact, a reaction to my environment and my state of mind. I realize this is going to turn off a lot of individuals from listening to me. Through lifestyle changes, I felt better. Through talking about it I was directed to doctors who before I fell were preaching what I wished someone was teaching.

Although, I have experience working out of a therapy department as a physical therapy nursing aide and I’ve cared for all ages and abilities both physically and mentally I am not a licensed medical professional. The ideas I share with you are that my ideas wh8ch align with these other medical professional beliefs. It is my desire to share what I learned by myself the hard way because modern medicine won’t utter Dr. Getson’s name or his ideas.

Understand I am on a journey…

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