Side Effects--The Third Dimension

     Side effects connote manifestations that follow the prescription of a prescription, or over-the-counter medication.  That is how I described it in Side Effects.  Yet, upon further reflection, I realize that it is to the individual with a disability to act as an informant regarding--an advocate for--the reporting of what a given medication is causing in them.  That turns on its head how we think of side effects.  However, if that is to happen, and be maintained the relationship between the individual with a disability and health care providers must change.
     This summer essential tremors in my left hand--the shaking of my confidence--led me to make an appointment with my neurologist.  A medication was prescribed.  Past experience with extreme chemical imbalances led me to ask my neurologist about the medication's side effect.  Depression.  Possible thoughts of suicide.  I was glad to know what side effects had been identified.  Though those side effects are--can be--very serious, I was not worried.  I have a strong emotional support system.  Generally, I am an upbeat person.  I left the doctor's office armed with information, and buoyed with unrealistic expectations of a cure.  Six weeks passed.  At my followup appointment, I reported progress, much more progress.  A cure.  Not attracted to slot machines, or poker, I was ready to gamble--gamble with higher dosages of the medication I was taking.  No cure was mentioned.  But....I knew what I wanted, and I was going to get it.  Case closed.
     I entered my cure fantasy phase knowing several facts about myself relevant to this situation.  First, I need to have directions written down, especially when it comes to medical issues.  Sometimes, and the only way I know to say when is to follow my intuition.  When that lovely little voice we all know says, "You need to write this down the instructions being given to you; it is as though I am Velcroing the instructions into my brain."  I still want the written instructions from others giving me the instructions.  That is not always true, but, when it is, I need to listen to my intuition.
     Beyond written instructions, I knew that I have struggled with strong resentment regarding medication--anticonvulsants.  It is not constant, but, it is a chronic condition to keep in check.  The third fact I know about myself is that I need to have clarity of thought.  Past chemical imbalances with anticonvulsants gave me an LSD-like trip once.  Psychodelic colors are nice, but, the feeling is not, when mental clarity is at stake.  Another anticonvulsant overdosage left me feeling as though I could see thoughts--the actual structure of thoughts--floating in front of me like a kite, but, a kite whose string was beyond my grasp.  Frightening.  Truly frightening.  The complete lack of any short-term memory during that same period of time was frightening.  Truly frightening.
     I entered into my request for a higher dosage of antitremor medication knowing the three facts regarding myself from past experience, not to mention the potential of depression, or suicidal thoughts.  I was instructed to report back in a week.  A mistake.  A huge mistake.  My thought process was so sluggish.  I struggled to stay my normal upbeat self.  Not happy-go-lucky.  That is not me, but, I struggled to function mentally.  I had no suicidal thoughts, but, the sluggishness was enough to forego a cure.  The sluggishness was enough for me to realize how much the old, lower dosage level had done to improve management of my tremors.
     My resentment regarding taking medication was aggravated by the prescription of antitremor medications.  Now, instead of two medications, I was faced with four medication bottles to fill into pill boxes.  The antitremor medication pills are very small--great for swallowing, smaller to pick up with my left hand.
     I called the doctor's office after the week on the higher medication dosage.  I said I wanted to go on a lower dosage than I was on most recently, but, on a higher level than I was on initially.  I knew what I wanted.  I was going to get it.  Case closed.  I wanted to achieve that goal by taking medication at morning, and at night, and not in the middle of the day.  Somehow, the mental, and/or emotional side effect of taking medication three times a day was to feel overdrugged--to feel like a drugstore.  It is not a feeling of being overmedicated.  Overmedicated and overdrugged are not the same animal.  They are two separate beasts.  I knew others might not understand the distinction, but, I did, and that was all that mattered.
     Efforts to get what I wanted had a cost--a heavy emotional toll.  The medical secretary suggested that I could cut one of the pills in half.  Two problems.  I could not cut the medication myself.  If my pharmacist cut the pills for me, I would not be able to pick up the pill with my left hand.  My left hand was affected by the tremors.  My tremors were the reason I needed to take the medication in the first place.  So, you say, "Just use your right hand."  Well, cerebral palsy took that option away.  Cerebral palsy stripped fine motor skills from my right hand.  Normally, I don't think of it that way, but, I was at my wit's end.  I was amazed that I had the emotional wherewithal to tell the medical secretary to go, talk with the doctor about options, and then call me back.  She needed to get information.  I needed to break down.  She did.  I did.  She called me back, and we straightened out the dosage issues.
     This is the third dimension of side effects.  Resentment.  Overdosages.  Overdrugged.  These are but a few of the side effects different from the tangible manifestations of taking a given medication that follow taking the pills.
     Side effects.  The first dimension.  Side effects.  The second dimension.  Side effects.  The third dimension.  Side effects.

Side Effects

     Side effects.  Side effects are three dimensional.  Three dimensional?  Yes, three dimensional.

     Side effects.  Proceeding from the most commonly dimension, and ending with what needs to exist in order for a "healthy, medical partnership" to exist, I will describe my understanding of each.  I am open to differences--honest engagement on these issues--regarding my comments and ideas.  The only way a partnership may survive much less succeed is for open, honest communication.

     Side effects.  The first dimension of side effects is the clinical, tangible, reportable manifestation of a disability--a condition that calls an individual to seek partnership with a health care provider.  The best way to identify this first dimension is with a refrigerator.  A refrigerator?  Yes, a refrigerator.  If you put the first dimension of side effects into a refrigerator--isolate the first dimension of side effects--the notion could be identified, whether or not the light was on.  The dimension would be available to be understood.  Whether or not the first dimension of side effects is understood depends upon all individuals' willingness to be enlightened.  The choice is ours--of each individual--to make.

     Side effects.  The second dimension of side effects centers around neurologists, as my energies are devoted here, other doctors, nurses, and other health care providers, as I have identified them.  I am open to the identification of other health care providers for a broader discussion.  My list reflects my own experiences since 1960 in the United States.

    Side effects.  The second dimension begins with the education of the neurologist, other doctors, nurses, pharmacists, and other health care providers I have identified, to the degree appropriate--education regarding medication, and chemistry.  Following initial education regarding anticonvulsants--any medication, for that matter--the second step happens in the examining room, or the pharmacy.  When an individual with a disability enters the examining room, or the pharmacy, the doctor and the pharmacist ask what other prescription and over-the-counter medications the individual is taking.  The next step for the neurologist, and other doctors is to prescribe, or not prescribe anticonvulsants based upon other medications being taken by the individual.

     Side effects.  The third dimension of side effects begins with the individual with a disability.  First, the individual with a disability is given the initial prescription of an anticonvulsant--any medication---to treat a given neurological condition.  Second, the individual with a disability needs to ask questions--needs to ask the neurologist--any doctor who is prescribing the medication--as to the physical, mental, psychological, or emotional manifestations secondary to the original condition is being treated.  The only way for a side effect to be identified in an individual is for them to report the side effects.  Reports of side effects by others--be they guardians, parents, other family members, or individuals close to them 

Long-Term Effects

     Long-term effects--the concept, not specific manifestations of my anticonvulsants--are illustrated best by telling you about a specific appointment with my neurologist.
     I went into a routine checkup with my neurologist with no anticipation of any medication changes.  At that point in time, I had no sense of "medical partnership" much less "a healthy, intelligent medical partnership with my neurologist--with any of my health care providers.  The appointment I share was one of many events and circumstances that motivated my desire for a "healthy, intelligent medical partnership" paradigm.
     At my regular neurology checkup, my neurologist said she wanted to take me off of an anticonvulsant I had taken since childhood.  She said she needed to substitute a different anticonvulsant to ensure that I would not have a seizure in the future.  [I was taking a second anticonvulsant that the neurologist had no intent in changing.]  My neurologist threw out the names of a bunch of anticonvulsants, the names of which I had no familiarity, much less knowledge.  She well may have told me the side effects of each option.  All I heard her say after giving the list was, "I would recommend..." after which she gave me the name of the anticonvulsant.  I sat on the examining table and thought, "OK, I trust you.  You know far better than I do.  These drug names are Greek to me."
     Shortly after giving me her recommendation, my ears perked up.  "If you were to go onto this anticonvulsant, I would need to put you onto it slowly.  Starting you at full strength could be lethal."
     Let's see now.  The anticonvulsant I have taken since childhood could cause liver damage, if I were take it too long.  Yet, the medication you are recommending could be lethal, if full-strength levels of it were to be prescribed when I started taking it.
    Hmmm....What are my choices again?
    Clearly, literacy, education, communication, and self-advocacy were missing--were needed--here.  A healthy, intelligent medical partnership depends on it.  Blame--on either side--of what didn't happen, or dismissal--of what did happen--have no place.
    Humor is essential.  Don't be mistaken.  Humor is vital in making this relationship work.  Humor directs both partners to where the needs lie.

Insurance. Incomparable. Priceless.

     Incomparable and priceless are hardly the words most people would use to describe health insurance.  Yet, those are the words that come to mind whenever I see that with the partnership between the health insurance company and me--their reimbursement, and my premiums and copays--we have enabled me to remain a contributing member of the society in which I live.  I am not a brain surgeon, nor am I a rocket scientist, yet, I am enabled to offer my gifts, and my energy to my community.  How you ask?  Well, together we--my health insurance company and I--paid for the anticonvulsants that keep the electrical activity in my brain calm.  Together, we--my health insurance company and I--pay for the medication that manages, not cures, but, manages tremors in my left hand.
     If I do start to lose my perspective, I take one simple action.  I sign onto my health insurance company portal.  I view the list of claims for benefits I have made.  I look at the gross amount of the medication, my premium, and my co-pays.
     Incomparable.  Priceless.
     I may be prejudiced, but, I ask two questions to those who complain about the high cost of insurance.  I ask two questions of those who ask why they--why everyone--needs health insurance.
     1.  What current medical needs do you have?
     2.  Do you believe you will wake up tomorrow with the same capacities you have tonight as you go to bed?
     Two simple questions, the answers to which should lead us, not to feel threatened by the questions, but rather, empowered by the answers to enter into a "healthy, intelligent medical partnership"  with our health insurance companies.
     Some say, "Don't take things--life--personally.
  "  I say, "How can I not take things--my life--personally?  What am I saying about life--about the value of life--if I live in any other manner?

Health Care Reform

     I can ill afford to engage in the national debate regarding health care reform in the United States.  So, why am I even writing about it.  Simple.
     One of the components of my concept of "medical partnership" is "health insurance."  Before I can make any comments--share any reflections--regarding health insurance, I must make a brief statement regarding health care reform.  If my reflections regarding "health insurance" are to be understood as I intend, then, I need to clarify the context in which it exists in my life.
     I make a plea, and put forth a question to individuals who do engage in the health care reform debate.
     First, please debate--engage in the decision-making process--governed by a spirit of reason, logic, and empathy.  Resist the temptation to play to people's emotions in seeking the support of people who seek medical care, treatment, and support.
     Second, I have one question of debaters, and decision makers.
     Do you believe that you will wake up tomorrow with the same physical, mental, and emotional capacities with which you go to sleep tonight?
     Please engage in prayerful, deliberative debate and decision making in that spirit.
     That is all I will say regarding health care reform, as it is understood in common parlance.  I will devote my energies to crafting a "healthy, intelligent medical partnership." 

The Dentist and Dental Technicians

     Going to  my dentist--my dentists over the years--and seeing my dental technicians spotlights the matters of "side effects" and "physical capabilities."
     For many years, I took an anticonvulsant to control my seizures--an anticonvulsant whose side effect was inflamed gums, among others.  As a child, I was not aware of other anticonvulsants that existed to control seizures.  I don't know whether that was a function of my age, or of the anticonvulsants that were available for doctors to prescribe.  It well may be that it was a function of both.  Whatever the availability of anticonvulsants in the 1960s, and 1970s, the effect was the same.  I knew I had seizures.  My seizures needed to be controlled by anticonvulsants.
     That said, each time I went to my routine dental appointment, I understood that I was going to determine whether or not I had any cavities.  Time and again, my dentist would look in my mouth and say, "Your gums are inflamed."
     "I take an anticonvulsant that is known to inflame gums."
     "Well, try harder when you brush your teeth.  Floss your teeth.  That will really help to reduce the inflammation," the dentist would say.
     Time and again, I felt guilty.  I was frustrated.  I felt angry.
     "Listen.  I cannot hold, much less manipulate the floss.  My right hand is affected by my cerebral palsy.  Due to the nature of my cerebral palsy, my right arm is inordinately stiff.  I don't think about it that much, because I have never known my right hand to be any other way.  But, for purposes here, purposes of self-disclosure, it is an important point to include.
 \   "I cannot position my hand, and hold it steady to move the floss between my teeth.  I cannot floss.  Don't tell me to floss.  It isn't going to happen.  I did not know until later in my life to say that I did not have "fine motor skills"  in my right hand."
     I am not sure whether I had said that as a kid, the dentist would have understood what I was saying.  I did not know how to convey that if I could grasp onto the floss that I could not guarantee that I could hold onto the floss.
     The saying, "the right hand does not know what the left hand is doing," is true for me.  Until recent years, I have not been able to grasp onto much larger objects with my right hand, and hold onto them.  For many years, I would need to guide my right hand into a given position with my left hand, before my left hand could go back to performing its role in a given task.  Even if I was successful in strong arming my right hand, I could not guarantee that my right hand would continue to hold up her end of the bargain.
     The scenario with the flossing, has continued beyond one dentist.  I confess that I have not been a model patient.  I do not know what might have been different had my guilt, anger, and frustration clouded my efforts.
     Self-advocacy and public education have been essential throughout my life.  To this day, I need to be at the ready to advocate for myself, and provide on-the-spot public education.  Self-advocacy is a matter of dispelling preconceptions, myths, and biases.  Accomplishing these three goals is achieving a "healthy, intelligent medical partnership."

Health Care Provider Equation

     My previous articulation of "health care provider" needs to be accompanied by the equation I believe states what the existing understanding of "health care provider" is.  I confess that I have not searched for the starting point that I found in the ADA for the term "disability."
     I want to begin my model with basic statements of my belief, and then develop the more complex expressions of belief and conviction.
     I offer to you an equation to use, in combination with the Health Care Provider entry, to think of and understand the notion of "health care providers."
     Health Care Provider=Any entity that bills for, and/or is remunerated for services rendered to an individual with a need  for medical treatment and/or support.

"Health Care Providers"

    One of two parties to a "healthy, intelligent medical partnership" is a "health care provider."  
I exceed the understanding of how "health care provider" is used in discussions of health care reform, or health insurance companies.  Contrary to these two contexts, I define this term more broadly.  My definition is based upon my life experience with individuals, and individual roles I have dealt with in meeting my ongoing health care needs.
     A "health care provider" is constituted of one of the following individuals, and/or individual roles, as given in the following alphabetized list.  If I think of further health care providers, I will modify this list, and reference them in future posts:
     Dentist and Dental Technician
     First responder
     Health insurance
     Laboratory technician
     Neurologist
     Medical secretary
     Nurse
     Orthopedist
     Orthopedic surgeon
     Orthotist
     Pharmacist
     Physical rehabilitation doctor
     Physical therapist
     Primary physician
     Psychiatrist
     Psychologist
     Social worker
     Surgeon--see orthopedic surgeon
     Discussing health care providers will be done by individual roles, based upon my experiences with each one.  Within each individual role, there may be multiple settings, be they hospitals, doctor's offices, the workplace, among others.
     I hope my comments, observations, and reflections will be balanced.  I will be true to my experience, yet, hopefully, my visceral responses will not cloud the element of human error on the part of the health care provider.  I hope that my reflections will identify places for improvement, rather than short-term expressions of frustration, or outrage.  Believe me, I have felt both in spades.

Disability Defined in Statutes--in the ADA

     A healthy, intelligent medical partnership" regarding individuals with disabilities must begin with a definition of terms.  I will begin with the statutory definition stated in Section 12102 of the Americans with Disabilities Act of 1990 (ADA).  That is my starting point.  I write the Brain Damage Diary, and Patty's Epilepsy Chronicles to share a much deeper understanding of disability that we must strive to achieve--that we must create.
     Section 12102 defines disability as follows:
     (1) Disability
The term "disability means, with respect to an individual
(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment (as described in paragraph (3)).
...
(3) Regarded as having such an impairment
For purposes of paragraph (1)(C):
(A) An individual meets the requirement of "being regarded as having such an impairment "if the individual establishes that he or she has been subjected to an action prohibited under this chapter because of an actual or perceived physical or mental impairment whether or not the impairment limits or is perceived to limit a major life activity.
(B) Paragraph (1)(C) shall not apply to impairments that are transitory and minor.  A transitory impairment is an impairment with an actual or expected duration of 6 months or less.
     This definition is vague--intentionally vague.  The ADA of 1990 was crafted as a guideline--an instruction to a civilized society, in this case the United States, as to how to regard individuals with disabilities in daily life, and availability to resources sufficient to be a citizen who makes valuable contributions to society.  There  has been, and will continue to be significant litigation and debate regarding the nature of the term "disability."
     The ADA of 1990 definition of "disability" provides the starting point for my offering of the phrase "individual with a disability."  The ADA definition was developed as a guideline.  My definition, my descriptions--my reflections--are shared in the hope of spurring discussion, and nurturing greater understanding.

Foundation of a Medical Partnership

     In order to articulate my concept of a "healthy, intelligent medical partnership," I must answer answer several basic questions, and share the presumptions I am making.
     1.  Whom do I conceive to be the people included in a "healthy, medical partnership"?
     2.  To whom do I intend my comments apply?
     3.  Could "a healthy, intelligent medical partnership" be applied to a wider group of individuals than I describe?
     For clarity's sake, I speak of "a" healthy, intelligent medical partnership, but, do not be mistaken.  What I conceive of is not one-dimensional.  Just as any law firm, medical practice, business, or family, for that matter, more than two individuals are involved.  As such, there are interrelationships that create and nurture the partnership.  However, in order for my partnership to be healthy and intelligent, it must be broken down into smaller components, and then reassembled once it is understood, so that it may live and breathe--so that it may thrive.   
     Included in a "healthy, intelligent medical partnership" are individuals with disabilities, and "health care providers," as I define them herein.  My intent is that my concept must apply to everyone to whom I address, or it has no chance of working--of being effective.  Finally, although the statutory definition of "disability" that I begin with--the Americans with Disabilities Act of 1990 (ADA) definition of "disability--would seem to exclude many individuals from my model, every individual is included.  That will become clear  when I offer my definition of "individual with a disability."  
     Questions articulated, brief answers outlined, let me make clear that I speak for myself.  Even if I was so arrogant, and pompous to believe otherwise, I am not omnipotent:)  I can specify seven or six basic descriptions of myself that are the basis of my reflections, I do not describe everyone who use the same terms to describe a part of who they are.  That said, I offer an alphabetical list of descriptions.  An alphabetical list--I cannot prioritize the list more effectively.
     1. Born in 1960
     2. Born and living in the United States
     3. Cerebral palsy
     4. Epilepsy--manifested by seizures
     5. Osteoarthritis
     6. Tremors
     7. A woman
     I have had many discussions with women affected by cerebral palsy, and epilepsy.  My interactions with men who live with cerebral palsy date back to the 1980s.  I cannot remember more recent conversations.  I believe more such conversations would serve to enrich and enhance understanding and insight.
     Being born in 1960, I have lived through greater openness regarding, and receptivity to what we now call "individuals with disabilities."  To show the progress we have made in language, I attended a school with the important part of its name being "School for Crippled Children."  I omit the full name because my intent is not to condemn what the school offered.  My intent is to demonstrate what language was accepted during the middle 1960s.  In the late 1970s and early 1980s, I was active in a "handicap" awareness committee.  In the early 1980s, I worked for a disabilities council.
     With my frame of reference established--a foundation laid--I may articulate my conception of a "healthy, intelligent medical partnership."   

The Birth of Medical Partnership

     Few people, if any, speak of the notion of "a healthy, intelligent, medical practice,"  much less "a healthy, intelligent medical partnership."  Typically, the relationship between doctor and patient is understood to be a meeting between a patient and a doctor.  In such meeting, the patient is understood to report symptoms and/or complaints.  In response to that information, the doctor prescribes a course of action, be it medication, diet, exercise, to name a few.
     Health care reform, and budget-saving measures can serve to reinforce this mentality.  I propose a different model that I believe need not be in opposition to the reform of health care, or budget-saving measures, but, rather, may be a means of achieving those two ends.
     My perspective is based upon my 52 years of living with a variety of disabilities--cerebral palsy, epilepsy, osteoarthritis, and essential tremors.  Each disability has spanned different times over my lifetime, and has had different effects on my perspective.
    Though my cerebral palsy has been my intimate since birth, her impact on my developing and nurturing "a healthy, intelligent medical partnership" has been tangential to my other disabilities.
    Epilepsy ranks second in its longevity in my life.  I took my first anticonvulsant at the age of approximately six or seven.
    Osteoarthritis, though not formally diagnosed at the time, began affecting my life at the age of 40.  Unexplained stiffness in my right ankle seemed to me to be a mere manifestation of my cerebral palsy.  Essential tremors are relatively recent intimates.  First diagnosed in 2009, hindsight tells me fear prevented me from learning to live with essential tremors.  First and foremost, I had never heard  the term "essential tremors."  I fancied myself to be a knowledgeable patient.  Though not trained in sciences specific to medicine, in general, and neurology, specifically. still I considered myself to be fully informed.  All I knew was my fears.  I knew of three men with Parkinson's Disease, yet, my contact with them was second-hand--my contact with them was sporadic at best.  Compounding my lack of contact, I knew little to nothing of the daily ins and outs of the condition--how did it affect the individual with it, not just the functional aspects.
     That is the foundation upon which I endeavor to build medical partnerships with my doctors, nurses, lab technicians, and other non-medical personnel to the extent that my disabilities affect my relationships with them.

Therapeutic Blood Levels

   Periodically, I, and other individuals who take prescribed medications are directed to have their blood levels checked.  Blood levels?  Yes, blood levels.  Lab technicians insert a needle in my elbow to extract a measure of blood.  I do not understand the specifics of the next step.  Suffice it to say, lab technicians perform tests that output the number of micrograms per milligram of blood of medication that is found in the bloodstream.
     Lab technicians could describe the steps they perform--the process that takes place--to produce the number of number of micrograms per milligram of blood.  Though important, I do not have the scientific background to understand the process.  It is important to understand.  How that number is interpreted is not universal.
    Someone--I do not know who it is--establishes what is known as a therapeutic blood level.  That level--that number--expresses the amount of medication in the bloodstream that sufficiently treats the condition for which it is prescribed, without causing adverse effects.  The adverse effects can include compromising the proper functioning of other body systems--the brain, the kidneys, and the liver being the most common.  Compromising the proper functioning of the brain may include equilibrium problems, hallucinations, depression, thoughts of suicide, among others that are beyond my knowledge.  Compromising the kidneys and liver, as I understand it, involves how the medication is processed in the body.
     Up until 2009, I thought that all prescribed medications had an established therapeutic blood level to assess its efficacy for an individual.  That belief gave me a false sense of comfort.  After experiencing adverse effects--dizziness, and vomiting--when I started taking the anticonvulsant, Vimpat, I learned that Vimpat did not have such a level established.  That was in 2009.  I do not know whether that fact has changed.  I do know that the other medications I take have such levels--such objective tools of evaluation.
     Though no one I know has ever said so, that fact pits the prescribing doctor against the individual for whom the medication is prescribed.  That fact has two deleterious effects.  I am not sure which is more important.  First, assessing the efficacy of the medication is impossible.  That fact makes it impossible to determine the interaction that one prescribed medication may be having on the body systems, the psychological, and emotional well-being of the individual.  [If I am mistaken in my understanding of that fact, I welcome being corrected.  Accurate facts--correcting misunderstandings of the facts is--are far more important than any egotistical affirmation of falsehoods, unintended though it may be.]  Secondly, the lack of a therapeutic blood level renders impossible the development, and maintenance of a healthy, intelligent partnership between doctors and other medical professionals, and the individual for whom the medication is performed.  The lack of such a partnership may not be important to the medical professionals involved.  But....the presence of a healthy medical partnership is essential to the individual consuming the medication.
     Without a therapeutic blood level for a specific medication renders impossible the assessment of how one prescribed medication is interacting with--affecting the efficacy of--another prescribed medication.  At least, that is how I understand it to be.  Over forty years of taking prescribed medications, and thirty years of knowing the phrase "therapeutic blood level" has given me the clinical knowledge of what the therapeutic blood levels for the prescribed medications I have taken are.  That knowledge has empowered me, as a patient.  Knowing the individual "therapeutic blood levels" for my medications has given me the tools necessary to develop a healthy, medical partnership with all of my doctors--primarily with my neurologist, though.