Originally published in January 2016, this is a post from the archives of the Art For Arachnoiditis Project .

The resource links included were active at that time and have been updated to the best of my ability. Use what resonates for you. Leave the rest.

How to trust your doctor (a.k.a. “Any Medical Practitioner”) after a medical injury.

January 26, 2016 ~Sheila L. Kalkbrenner  The Art For Arachnoditis Project at SheilaLynnK Art Studio, An experienced patient. NOT a physician. Be Sure to seek Professional Advice from a Trusted Practitioner prior to making any adjustments to your treatment plan.

After nine years of fighting to recover (read as “survive and start over”) from the medical injury (Spinal Adhesive Arachnoiditis in the Lumbar and Thoracic Spine) which occurred during a “Routine” right knee arthroscopy to treat a work-related knee injury (a torn meniscus); I find myself in an alarming state of déjà vu.

 I need to create a new word for that. You know, a situation which looks remarkably like another situation that you survived but still strikes fear in your heart…a Word for THAT.

After two months of dealing with debilitating pain and swelling in my OTHER knee, (with no known recent prior injury or incident) it has come to my attention that I must have a “routine arthroscopy” to correct the torn meniscus they found in there – along with a few other problems.  The onset of symptoms was much different this time and began with posterior knee pain and swelling…symptoms of the torn meniscus started weeks later after trying to walk on it with the posterior knee issues. 

In MY head, nothing about any of this is Routine! Likely, nothing about anything requiring medical care will ever really feel “routine” to me again. But, I did get my Disaster Mind under control so that I could approach the situation in a rational manner.

For most people this would be considered an elective procedure. However, as the current knee symptoms are impairing my ability to cope with the abundant demands of Living With Arachnoiditis, it would not seem that I have much choice but to seek some kind of corrective measures if I am to maintain (and improve) the quality of life I have worked so hard to achieve since THAT permanent medical injury occurred.

So, HOW do I move forward in the face of this playground for my Disaster Mind? (I can’t take credit for that term…I got it from Heatherash Amara.)

1. Redefine the term “Trust”~ This word has long since ceased to mean that I believe everything the doctor says or have absolute faith in his/her knowledge. Although I do, somehow, still believe that most practitioners really DO have good intentions, I recognize the limitations of their knowledge and the parameters* that restrict them under the current demands of the usually, Insurance-Imposed treatment structures and protocols here. And, unfortunately, there ARE doctors out there who are mostly worried about the bottom line and NOT the patient. Beware of those. No sense in keeping the bad apples around. 9 Signs You Should Fire Your Doctor     
2. Ask The Questions ~ Any questions you have…big or small…this is your chance to really KNOW and be involved in your own treatment and care.
3. Expect treatment ABOVE that of the accepted “Average Standard of Care” ~ You deserve it. If WE change OUR expectations…the “average standard” will no longer be accepted. (i.e. Did you know a general practitioner is seldom, if ever, expected to look at your entire imaging study? Often the focus is only on the specific item questioned by your referring physician and the individual slides related to that. On average, the rest of the slides are ignored…even if they might reveal an associated injury or condition of More concern. Nobody knows because Nobody looked. On the other side of that, your treating general practitioner relies mostly on the radiology report (not the actual imaging study or slides) to determine your treatment plan. Some do look at the slides but ONLY zoom in on the items identified by the radiologist. On average, it inherently becomes a circle of validation instead of being a thorough evaluation.) It IS okay to ask your doctor to personally review the images in question …if he/she admits they do not know how to READ those images, ask them to consult with or be referred to somebody who IS.  
4. Sacrifice Convenience for Quality ~ I know going into it that asking questions may get me Fired as a patient. We are a society of people enslaved to convenience to save time, money, effort and simply be more efficient. But, this can lead to the opposite outcome. Going with the flow isn’t always the best way to go…especially when it comes to Medical Care. One obvious example: I have become increasingly aware of the way you can sit in the waiting room for hours but, there is seldom enough time included in the appointment to actually read the forms we are supposed to sign in the exam room before we even talk to the doctor. Most patients simply accept this and sign anyway. Yikes!  Rarely is there Ever any indication that anyone actually READ the form(s) we hurriedly completed.  Another more specific example:  The first referral for treatment is close to home but after you ask The Questions, the Specialist gets nervous and wants to send you to a “Special-er Specialist” two hours (or more) away. Know that if your doctor refers you farther away and you do NOT have means to get there, many forms of insurance WILL VERY LIKELY cover medical transport. Oh! And back to the questions. Don’t forget to ask WHY, this specialist is special-er than the one you just saw. What is it that makes him/her More qualified than the one you already have. I don’t say these things lightly. I am well acquainted with the frustration of switching doctors, of WAITING and of Jumping through the Hoops and the weeks and weeks of untreated symptoms while all that admin junk gets figured out…and while trying to actually FIND somebody who IS qualified AND willing to be the Real Deal Doctor. Having just gotten patient-fired this morning; knowing what I do, I still wept a little at the delay, frustration, and complications which will inevitably ensue.
5. Know the meaning of Informed Consent ~ Being informed means that you know the risks and understand exactly what is happening (i.e. whether your medications, procedures, and/or relevant equipment are being prescribed within FDA guidelines or being used off-label and WHY.) Although it is by no means a comprehensive list of what COULD go wrong; the FDA Adverse Events Reporting System MAY help red flag anything warranting additional attention.
6. Know your Patients’ Bill of Rights ~ print it out and read it while you are in the waiting room. 
7. Balance your Panic with Wisdom ~ A holistic approach to Wellness provides me with sort of a system of checks and balances which includes Modern Medical care but does not rely on it exclusively. Although I am attentive to the atmosphere in the physician’s office and the way that I am treated; I recognize that Invasive Procedures Warrant more in-depth attention and concern than an annual check-up. I work to know myself so that I know the difference between “Disaster Mind” and a rational, intuitive alert to a need for BETTER care and/or more information. Unless I am bleeding or on fire, I do NOT make any medical decision under duress. (i.e They call and want me to decide something while the spaghetti is boiling over and the dog just ran out the front door. My appointment was delayed by the other patients asking questions during their appointments and after waiting for hours to see the doctor my bus is going to be here any minute but they want a decision before I leave. You get the idea.) Unless it is an URGENT-TRULY-LIFE-NOW-DEATH-IN-A-MINUTE emergency, you can ALWAYS call them back after you have had time to think about things and process your questions. It’s not like they can fix the problems/pain right this instant anyway. There is time to think, to find out and consider my options BEFORE I decide.
8. NEVER, EVER SETTLE FOR SUBSTANDARD TREATMENT BECAUSE YOU “DON’T WANT TO INCONVENIENCE ANYONE ELSE.”  ~   I am realistic. I know there are no guarantees in life. Anyone who knows me knows I am NOT a Diva. I understand the humanity of the people providing the care. I am usually a very patient patient.  But, I have learned the hard way to speak up. Being polite is no excuse to permit inadequate or questionable treatment. You may be on the gurney rolling towards the O.R. and realize you have another question…Guess What! YOU can stop everything to get those answers. If necessary YOU can even re-schedule the whole damned thing!  YOU are the decider.
9. OWN YOUR WELLNESS ~ I have to live with the decisions I make, the procedures I permit (or not), and the outcome of the care I receive. It is MY job to make sure to-the-best-of-my-ability that it is the RIGHT care for me.
10. TRUST YOURSELF ~ I know that I know my body better than anyone else. If am being told something that doesn’t mesh with that knowledge; I trust that there are answers elsewhere that make more sense or seem much more applicable and I seek them out. I expect my knowledgeable doctor(s) to be willing to explore those options with me.

“Life shrinks or expands in proportion to one’s courage.”— Anaïs Nin

So, in the midst of weighing the pros and cons of completely avoiding ANY corrective measures for this knee -because there simply are no guarantees; I am confronting my trust issues head-on, making sure I have explored all options available, griping about the need to do so, and trying to be responsible for my own outcomes. FEAR is a powerful thing. After coming up empty in my search for tips on how to trust that everything will be okay and how to have faith in that after a medical injury I am writing about my discoveries to Re-assure myself and to give Other people Something to Find when they do the Same search.   I hope this list is useful to you.

~Wishing all of you a low pain day. –slk

Other Related References:

HIPAA: Health Insurance Portability and Accountability Act

If your doctors’ office doesn’t know, your local Community Action Agency and/or Department of Social Services should be able to advise you about how to obtain Medical Transport.

~ A note about being “Patient-Fired” …it’s not about a routine referral. It happens when a doctor says, “We don’t have the staff to handle your case.” Or “I am not sure we have the time that is needed to adequately review your history/needs/specialized care.” Or the secretary says, “The Doctor has reviewed your questions and case history and feels Dr. X,Y,Z would be better at assisting you. So, you don’t need to worry about the pre-op schedule we gave you. You’ll get a new one from them.”

For a patient who is Never belligerent, in the midst of pain and other symptoms and stressing over the logistics of just getting there in the first place; these types of statements can Feel like being punished for speaking up and following through on important concerns. The “Whatever-Dude” norm that pervades through our land makes me want to just go along to get along. BUT “Disaster Mind” stomps on His head. Out of the rubble of the battle between Disaster Mind and Whatever Dude walks, “Ain’t-Nothin’-But-A-Thang Girl”. It’s her rational, intuitive, wisdom-ess voice that I need to hear.

It says, “Now you know he/she wasn’t the right person to handle this situation With you and you can find the person who is.”

Sometimes she throws in a random aside like, “Suck it up buttercup. This too shall pass” but, mostly it’s just a compassionate middle-of-the-road perspective that helps me get on with my day….One hour, one minute, one second at a time…depending on how much I can handle all at once on THAT particular day.

Be real with yourself. Being Patient-Fired often means that wasn’t the right path to be on.