Balance. Essential Tremors. Clarity.

     Well, the journey back continues.  My mental clarity--my drive--have returned.
     Thank God.  I get angry when my body fails--betrays--me.  Yet, truth be told, I figure out what I need to do, and try to move forward.  I do not have a choice.  I don't mean that pitifully.  I know people who whine, whimper, shy away from taking any positive action--any action at all, and my urge to strangle them is difficult to suppress.
     But, mess with my mental clarity, and I feel lost.
     I felt naked when I met with a group regarding church reform last Wednesday.  I could not remember ANY details of work I had immersed myself in.  The group was concerned that I was overcommitted in my time.  I only wish.
     My left hand needs more medication to be tamed now.  I will call on Thursday, and ask about going back to 60 mg of my antitremor medication.  I'm on 40 mg now.  I was on 80 last week.  Amazing what a difference 20 mg. makes...both ways...either way.
     The prayer I seek now is a bit more subtle, or nuanced.  Pills.
     Pills.  They are my lifeline--for a lifetime, as least as I  understand it to be now.  At least that is my understanding regarding my anticonvulsants.  I need to approach my antitremor medications with  the same mindset.  The temptation I need to resist is self-pity, resentment, some sense that I can surmount the medication, or a combination of any of those three.
     Beyond seeking balance of medications, if I am going to be successful, to any degree, I need to stay as active as possible.  This summer, I have gotten off track with the healthy routine I had established. The combination of doctor appointments, and church reform meetings messed up my swimming routine.  I spent at least 24 hours over six weeks helping a friend to set up a laptop--no--setting up my friend's laptop and scanner.  Everything I did was necessary, and in of themselves, I wanted to do each.
     I am hoping to get back to my routine of four days a week, an hour each day.  I am out of shape.  I am trying to take some other constructive action.  I am going to look at getting a front door handle, rather than a door knob, to lessen strain on my left hand.
     My prayer?  Now, and over the long haul.  Balance.  Steadiness.  Loss of any resentment or pity--toward the temptation to indulge in either.
     Thanks for listening.

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.

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?

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."

In Control?

     Recent tweaking of my anti-tremor medication brings one word to mind--control.  Control?  Yes, control.
     Oxford Dictionaries defines "control" as "[mass noun] the power to influence or direct people's behavior or course of events."
     Control.  Chemical.  Neural.  Human.  Control.
     Control.  Seizures.  Neurologists.  Control.  Me--a 52-year-old adult.  Control.
Control of seizures seems straightforward.  The neurologist identifies an anticonvulsant to control seizures.  Based on my weight, among other factors, the neurologist prescribes a specific dosage.  Simple.  Periodically, blood is drawn.  Lab technicians measure the amount of medication in my bloodstream.  Simple.
   Well...not so fast.
     For years, I thought that my neurologist had the final say in the anticonvulsants I took, and in the amount.  I respect the training, and clinical experience of neurologists.  Yet, prescription of an anticonvulsant that caused me to vomit incessantly for several months was a test of my strength, and an unforgettable lesson.
     I am the final arbiter of the medication--the final arbiter of the way I live.
      Underdosage had a clear--unmistakable--effect--a convulsion.  Underdosage had an incentive to correct--the consequence was too strong to tolerate.  The only option I understood was to accept the pronouncements of my neurologist.
     Control.  Tremors.  Neurologist.  Me--a 52-year-old adult.  Control.
     Tremors in my left hand started at least five years ago.  Fearful of what it might be, and without the strength to confront it, I denied it.  I knew people who loved me noticed--were deeply concerned--about the tremors.  But, I could not confront the tremors.  I needed control.  I needed to control what the diagnosis might be--I needed to control how I confronted it.  I needed to steel myself to confront it.
     Control.  The diagnosis.  Intentional tremors--essential-tremors.  Control.
     In my fearful--prediagnosis--days, the only way I knew to confront my tremors was to intend to be steady in my movement of my left hand, most notably my handwriting.  My thinking was that my hand would be steadier--my handwriting would be more legible, if only I concentrated my full attention on being steady.  It seemed simple.  It makes sense.  Well....the harder I tried, the shakier my hand became.  The harder I tried the more illegible my writing became.  The shakier I became, the more out of control I felt--emotionally.
     Control.  Intentional tremors.  Anti-tremor medication.  Control.
     Prescription of a medication to eradicate my tremors--to take away my lifelong fear--seemed irresistible. My lifelong fear?  Simple.  My left hand would be compromised temporarily, or permanently, such that my mental, emotional, and spiritual resources would be trapped in my body.
     Control.  Take prescribed medication.  Control.
     Taking one 20 mg. minuscule blue tablet three times a day seemed a benign price to pay.  I feel guilty in saying that that pill combined with the anticonvulsants I take left me feeling emotionally overwhelmed--out of control.
     Control.  Mind.  Body. Spirit.  Control.
     Though an adult of 52 years, I have relinquished control to medical professionals, who know better, or so I have submitted myself to believe.  Yet, slowly, ever so slowly, I am learning that I am the final arbiter of how I--how my body--shall live.
     Control.  Mind.  Body.  Spirit.  Control.
     My emotional response to my antitremor medication could not be measured clinically.  Thank God, my doctor believed me--honored my response.  A different dosage synchronized with my anticonvulsants seemed a reasonable alternative.  Somehow, I was overwhelmed by having to ingest medication more times during the day than at the beginning and end of it.  Yet, that was how I felt.  Interceding events between then and now have not changed how I feel.
     Control.  Mind.  Body.  Spirit.  Control.
     Honoring me--my response--involved an educated--well-informed--tweaking of my dosages.  With full-knowledge of adverse effects that might follow, I opted to try a higher dosage of my medication.  I did not think my tremors were as well controlled as they could be.  I was so overwhelmed emotionally, and lost perspective such that I agreed to try a higher dosage.  I confused tremors with loss of stamina.  I wanted my tremors eradicated and I wanted my indomitable left hand returned to me.  Tremors can be controlled, but I do not have the right to abuse my left hand by stretching it beyond its limits, if I have any desire to live fully engaged.
     Control.  Mind.  Body.  Spirit.  Control.
      I am not without control.  Overdosage of my medication.  Many people, when faced with medication overdosage issues throw up their hands--they submit to their doctor without proclaiming the limits by which they are willing to live.
    Choices between the lesser of two evils are troublesome at best.  Such choices should not be "entertained."  Such choices should be contemplated with due care.
    Control.  Mind.  Body.  Spirit.  Control.
     My choices?
     Have my tremors fully controlled, and live with clouded thoughts, and thoroughly exhausting depression, or make necessary accommodations to what medications cannot control.  I am still learning what that control--what that balance--implies on my life.  Those are the extremes.  I do not live in extremes.  I live a full life.  Most people I know live fully-engaged lives.  Several people I know concern me.
     Control.  Mind.  Body.  Spirit.  Control.
     My tremors are controlled through deliberate means.  Medication.  Accommodation--reasonable accommodation.  Engagement--mental, emotional, and spiritual engagement.
     Control.  Mind.  Body.  Spirit.  Control.
  Some refer to "Minnesota nice."  Though I live in Minnesota, I do not engage in "Minnesota nice,"  I do commit myself fully to passionate, optimistic living.  To the degree possible, I surround myself with individuals committed to live so.
     Control.  Mind. Body.  Spirit.  Control.

An Unthinkable Thought

     As I watch my body deteriorate, I covet my speech, I covet my writing, I covet my capacity--the gift I have been given to think.
     I have been given a taste--a preview--of what living with impaired thinking is.  Recent anti-tremor medications--recent overdosages--reminded me of much more serious thought processes that have been impeded.
     In 2003, a serious overdosage of a prescribed anticonvulsant sent me to the hospital, and then home to my parents for several days.  My medications levels were adjusted.  My parents took me in for several days. Anyone who knows me, knows that being independent--living on my own--has been a source of tremendous pride.  That is how I was raised.  Yet, fearful to me was the prospect that if I left the hospital, and returned to my condo to live alone, I would forget to attend to the most basic of daily tasks.
     My medication dosages were changed.  I regained my capacity to return to my condo.  I returned to my full-time job.  Yet, on my first day back, I told my supervisor that I was afraid that I would not be able to do my job.  My short-term memory was non-existent--completely nonexistent.  For three weeks, I had no short-term memory.  I had to write down the simplest of instructions, and information, lest I would lose any sense of what had been said to me.
     The ability to think--the ability to compose thoughts--was no longer a given that I took for granted.  Thoughts looked like kites to my minds eye.  I tried to capture ideas and facts, and hold onto them to locate words and sentences to hold down the kite--to secure the thoughts.  During those early days, the only way I could express myself clearly was through writing.  Even then, I did not have the sense--the confidence--that my words matched my ideas--that my sentences made sense.  I sent e-mail messages to my mom to document  how I felt--how I was progressing, or thought I was progressing.  I pleaded with  her--she complied with my pleading--to give me feedback.  I owe my life to her, in every sense of the word.
     As I look back to the fearful times, I look to the future with harbored fear.  Will I lose hold the kite once again?  May I do anything to stop it--to stop it from happening?  What must I do?
     Losing  my thoughts--losing my gift of composing thoughts.  An unthinkable thought.

Confronting Fear

     Confronting my fears--about my brain damage--through writing helps immeasurably.  It is my indulgence. I hope it may be more than that, but, it does a world of good to air fears.
     Dying of a seizure frightened me.  My seizures are well controlled by anticonvulsants.  I had heard of a form of seizures that kept going--status epilepticus.  I had heard that during pre-menopause that bodily chemistry changed, or was unstable.  Putting those two together, my paralyzing fear was that I would fall victim to status epilepticus.  There was hardly anyone I could ask.  My job was to assure family, friends, and colleagues--especially colleagues, who did not know me well--that it was highly unlikely that I would have a seizure.  My mother was a whole lot of help.  She had experienced no chemical imbalances during menopause.  Doctors were clueless regarding the living realities of epilepsy.  They knew little more than the chemical--the clinical--aspects of seizures.
     Menopause--successful, peaceful menopause--was a gift.  I could relinquish my fear, and move on to a new chapter of my life.
     Fear has not left me.  Yet, writing has liberated my fear--not eliminated it, but, writing has given voice to my fears.  Some are put off by confessing--by confronting--fear.
     Zoomer moved me away from fears of other people--of their judgments of my "chair."  I do not begrudge anyone such fears.  I am haunted by my fear of a co-worker's wheelchair.  She died at the hands of her mentally-ill husband.  She understood my fear.  She did not confront me with it.  We never spoke of it aloud.  She knew that I needed to move through my fear.  She could not force it.  Jean, I wish you could have met Zoomer.
    Being "given" less stamina, and less strength in my left hand, I am learning how to adjust.  What may I say?  What must I do?  What help do I need?

A Tough Pill to Swallow

     I have taken many pills in my life--legally--all prescribed.  Different colors, different shapes, different  sizes, different tastes, different dosages, and different frequencies--I have taken many different pills for one reason--to keep me alive.
     Keep me alive. Not breathing.  Alive.  Clear in mind.  Steady.  Steady in body.  Deep in thought.  Filled with insight.  Filled--not full--with life.
     Last week, two little pills--two little blue pills--brought me to my knees.  Tremors in my left hand--my left hand, my only hand by which to live.  My right hand bends down--shies away from carrying her load.  So, I forge ahead.
     Medication overdosage.  I know the landscape.  I have scaled the terrain.  Several nights at my parents' home.  Nine days in the hospital.  Over six years, two separate instances introduced me to medication overdosage--to the self-advocacy necessary to adjust the blood levels.  The terms of art.  Blood levels.  Therapeutic blood range.  Troughs.  Dizziness.  Vomiting.
     Last week, two little pills--two blue pills--brought me to my knees.  Easy to digest--in my mouth, down my throat, in my stomach--yet, hard to swallow.  Severe arthritis. Severe cramp.  Insomnia.
     Shaky of hand.  Foggy of thought.  Need called me to self-advocacy.  Dosages totaled before my eyes.  Pill bottles at arms reach, I called for help.
     I started at one 20 mg. pill, three times daily for a total of 60 mg. daily.  Wanting synchronicity with my twice daily anticonvulsants, I felt overwhelmed--a pill popper--a resentful pill popper.  Honestly, I lost sight of the efficacy of the medication.  I was angry.  My lifelong fear was coming true--I was losing the use of my left hand, or so I feared.  Slowly, I have adjusted.  Not completely.  Some tangible adjustments.  Some changes to  my expectations.
    Settling for nothing short of perfection, adjustments were made in response to my preferences.  More control.  A higher dosage.  40 milligrams twice daily.  Synchronous with my anticonvulsants.
    Perfect.  It might be too much.  I might not tolerate the dosage.  But, hey, control.
    Days passed.  Severe arthritis in my left arm and hand--my left hand and arm.  Severe cramping.  Insomnia.  Depression.  Lack of drive.  Lack of interest.  Loss of short-term memory.
   Medication overdosage.  I know the terrain.  I called for help.  My dosage history clearly stated by me, I awaited help.  Confusion.  Instructions to take more than I was taking, not less.  I had no energy--mental or emotional--to debate, or clarify confused instructions.  Rare to me, I told the nurse to talk with the doctor, and call me.  I resisted her attempts to pacify me.  Foggy in mind though I felt, she was going to know that she needed to find help for me--advice, information to rectify my medication intolerance.
   "Maybe you can split the pills in half."
    "No.  That will not work.  I have use of one hand--my left hand.  I am taking this medication to control shakiness in my left hand.  No.  That will not work.  Even if I have the pills halved by the pharmacist, the pill would be so small that I would drop it with my shaky left hand.  No.  That will not work."
   My insistence paid off.  Not in less shakiness yet.  My insistence cleared my head of the toxic effects of the medication on my body.  Now, we shall work toward a steady left hand.
   Last week, two little pills--two blue pills--brought me to my knees.  Easy to digest--in my mouth, down my throat, in my stomach--yet, hard to swallow.