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Tuesday, May 31, 2011

A Splash of Excitement

A splash of excitement.

Seemingly off topic, but an important part of keeping life fresh -- elevating the spirit to new heights... Providing a thrill to get the blood pumping... And elicit the authentic jubilation of a child... A welcome break from the seriousness of daily life....

I completed a skydive today. My first off-ground. There may be more. I was actually ready to do another as soon as my tandem instructor and I touched down... But I will wait... For another time when it will be just as sweet... Another celebration of my finessing the curve balls and fast balls that are in store for me... For adapting with dignity and optimism... And not giving up in the face of life's absurdity.

Yes... I will wait... To once again glide through the clouds and slice through the sky with the wind in my ears... To steer my parachute under the guidance of a guru... To feel the wind beneath my feet.

We're all freefalling... We're just not all aware....

Friday, May 27, 2011

Mistakes Along the Way

Mistakes have the same value in your lifestyle as they do in pre-anaphylactic life -- they are opportunities for learning and personal growth.  Perfection is an ideal that exists exclusively in Utopia alongside Virtue, Unicorns and 43 year old Virgins; so, from here on in, release yourself of the burden of having to master your lifestyle perfectly.

Each blunder reveals another invaluable clue as to what is happening in our bodies at the cellular level, which causes us to experience such severe reactions.  Without these blunders, we are a powder keg awaiting the next inevitable explosion.

Mistakes are redeemable due to our ability to learn from them... Therefore, PAY ATTENTION.  You know the signs -- when you feel your body launching a reaction, make note (physically, if possible -- through writing, a cell phone text/note, or via a voicemail you leave yourself) of what you ate, smelled, did and came into contact with immediately before reaction onset.  How are you feeling at the moment?  How does it compare to the previous incidents?

Next, CALM DOWN.  Physical activity and panic make the symptoms worsen more quickly.  In asthmatics, if, during an attack, the person gets emotional -- usually upset or panicked -- lung capacity diminishes exponentially.  The minute the asthmatic stops the emotional reaction and forces him/herself to calm down, lung capacity starts to increase.  Not an easy thing to do, but if you can manage it, you will buy yourself some valuable time.  So, help yourself uncomplicate the complexity of your reaction.  Calm down to minimize reaction momentum and enable yourself to think through what needs to be done next to get you into the hands of a competent healthcare team as quickly as possible.

Take your medical insurance card out of your wallet and put it in a pocket or place that will be easily accessible (to you are a healthcare provider) as your reaction progresses.

If the reaction is progressing quickly and you have an Epi Pen, you might have to use it.  When to use the Epi Pen should have been discussed with your physician during the first or second office visit.  Always seek the advice of a licensed healthcare professional before using prescription medication.

Seek someone's attention and ask them to call 911.  Explain what you are experiencing.  If breathing and speaking are getting difficult, then proceed to the path of writing.

If your tongue is swelling, you might not be able to speak clearly -- so write your plea for help on a note.  Pen and paper will never become relics -- always carry them with you.  Include the fact that you are having an anaphylactic/deadly (do yourself a favor and use both words to describe your situation -- some people are unfamiliar with the term "anaphylactic") reaction to [name of your allergen] and to please call 911, and [name of your most reliable emergency contact and his/her telephone number].  Also write down the location of your insurance card (e.g.  "Medical insurance card is in right jacket pocket").  If you have the ability, also write the name and telephone number of your physician.  Ask the ambulance if they can take you to your physician's hospital without incurring unusual charges.

Once in the ambulance and on the heavenly drip of benadryl buzz, remain alert enough to answer questions accurately, know where you are going or being admitted, and answer the questions of the ER personnel once you arrive at the hospital.  After the initial flurry of your arrival, vitals monitoring and a possible administration of medicine, you will have time to doze off... Your emergency contact will hopefully arrive soon thereafter to watch over you. Ask your contact to request copies of your file for this ER visit, so that the record can be shared with your physician.  Survival is dependent on a good, impropmtu delegation plan.  Just don't delegate the relief.  The relief, combined with the IV makes for an intoxicating mix.

After you're home and the drowsiness has worn off (and you WILL be tired -- your body just experienced upheaval of epic proportions), document all you can about this event... With particular emphasis on the hour leading up to the reaction -- this will help identify the trigger.  Read through the notes you jotted down or captured on an electronic device, and listen to the voicemail(s).  Weave the bits together into a set of data that can be presented to your physician during the next visit.

Now schedule that next appointment with your physician.

Wednesday, May 25, 2011

Action

Action.

Action is the result of your empowerment; it is what will enable you to develop a healthier lifestyle paradigm.

Anaphylaxes had the upper hand, prior to your diagnosis... It could have struck at any time, and, literally, wiped you out.  Now, you are on the look-out for it... And you know the warning signs, and how to deal with it... You will make mistakes, but that's okay -- you'll be able to handle it.  You are now equipped to keep the enemy at bay and win the war.

How do I define "winning the war"?  There is no one definition.  Anaphylactic allergies can be outgrown -- allergists suggest re-testing every seven years.  However, we are not all that lucky.  Some of us are in this for the longest haul of all -- the nature of these allergies, according to modern science, is unpredictable.  So how do we win in this situation?  We win the war by proactively addressing the issue -- by developing a positive lifestyle that allows us to enjoy the luxuries of life, sculpting out the bits that prove to be life-threatening, and erecting allergen barriers that provide us the maximum safety and freedom possible.  We win the war by developing an alternative lifestyle that preserves an acceptable quality of life.

What's "acceptable"?  Only you can define that.  But I advise you to define parameters that are forgiving enough not to leave you feeling frustrated or deprived.  Yep -- I just used the D-word -- only an insane person would see a huge, purple elephant sitting next to him/her and deny it peanuts.  The deprivation mindset can suck you downwards like quicksand -- do yourself and everyone in your life a favor -- don't let it.  It's okay to allow yourself to go there initially -- it does, after all, suck like a neverending Tootsiepop without the Tootsie... But noone will want to accompany you through your perpetual victim saga... And, frankly, the victim mentality spirals downward... Wrong direction.

In all probability, there are things in life that you either missed out on, or underappreciated before your anaphylactic allergy became active.  Things that you might now be more open to trying... And, to your pleasant surprise, liking.  When one door closes, another opens up... Somewhere... You just have to follow the draft.

Back to "action".  Your Action Plan should, first and foremost, help you avoid anaphylactic events.  It should be a "work in progress" for the lifespan of your allergy.  As you have more life experiences and your body ages, you can refine the plan along the way.  Talk to others who live an anaphylactic lifestyle -- ask them how they manage to safely enjoy activities that could potentially lead to an anaphylactic event (e.g.  If yours is a food allergy, how can you continue to eat in restaurants without ending up in the ER at the end of the meal?).... If it makes sense to you, make some of their tricks your own -- create your own repertoire using the benefit of others' experiences in addition to your own.  The best action plan for you is one that only you can devise, because you alone know every single thing you do every moment of the day.

Justice.  Knowledge.  Liberate.  Let's go have some fun!

Friday, May 20, 2011

Director of the Battle

Drive.  Direct.

You've selected your physician.  Great.  No rest for the weary.  Schedule a visit to either agree on the course of therapy that the two of you designed, or obtain the clarification needed to help you further refine the therapy.  Doubtless, more questions and concerns may have arisen since your last appointment.  Jot them down and be sure to bring your list to your next appointment.

After the pleasantries of the day are done, let your physician know that you've given thought to your last conversation and that you subsequently had questions -- you would now like to go through them.  Your physician might ask you to read them, or might ask you for the list to read (some people process spoken words better; others process written words better -- as long as your doctor undstands your message, how s/he takes the information from you should not matter).  Your doctor should answer your questions to the best of his/her ability, and might even provide you with supplementary information and/or reading materials.

Find out the medical designation of the selected therapy.  Is it in clinical trial, or is it an approved therapy?  Does it incorporate a mixture of alternative medicines (e.g.  Western plus Chinese, Western plus Ayurveda, Western plus Homeopathy)?  Is it so radical that it is neither approved nor in clinical trial?

Make sure that you touch on the subject of therapy timelines.  Will you have to receive this therapy once a week for the rest of your life?  Is the therapy designed in 6-month stages, with four stages being the full course?  Is this therapy necessary once a month for seven years, at which point you will be re-tested?

What about the cost?  Is this therapy covered by your insurance plan?  If not fully, what portion will you have to pay out-of-pocket?  Will there be a co-pay for each office visit?  Will it differ from the co-pay amount on your insurance card?  Are there any programs in existence that might subsidize part of your cost?  Does the pharmaceutical company make allowances for patients with hardships?

Lastly, ask what your best case and worst case prognoses would be as the result of your undergoing the selected therapy.  If there would be no change, then you might ask yourself why you should put your body through the trauma, while wasting time and money.  If the strategy would yield any positive result(s) to your health, it might be worthwhile.  If it leads to a cure, it's a no-brainer.  Just be careful of anyone who offers you a seemingly magical solution -- magical solutions don't exist.

Weigh the answers to your questions, and make your choice(s) based on your comfort with your physician and his/her ability to successfully administer the therapy.  Work the therapy schedule into your everyday life -- weave it into the fabric of your life as you would an addition to your family.  It is an addition to your life.  If you do not commit to accepting and living an anphylactic lifestyle, you leave yourself a perpetual victim of anaphylaxes.

I am a survivor.  So far.  Are you?

Gutsy.  Healer.  Indestructible.  Develop a living action plan.

Wednesday, May 18, 2011

Plan Execution

Execution.  Bloodless execution.

With your thoughts  organized and your supporting documentation in order, it's time to execute your plan -- put it into action and keep the momentum going.

1.  Meet with the physicians and discuss your dossier.  Ask your questions.  Ask the physician what testing methods are used to diagnose an anaphylactic allergy, and make sure you understand the methods well enough to be able to select a method with your doctor's advice.  Ask the physician what methods s/he prefers and why this is his/ her preference.  Decide whether or not you are comfortable with this doctor's approach.

2.  Get diagnosed -- confirm all suspicions.  Become an active participant in your health and well-being.  Ask the doctor to test you for foods/allergens you suspect, including everything in the food/allergen family.  If you are uncertain, let the physician suggest and justify a testing plan for you.  The physician should take your concerns into consideration, and not try to force you to take a course that you do not understand.  "God complexes" should be checked at the door -- if s/he can't physically walk on water, feel empowered to suggest s/he take it down a notch and replant his/her feet on earth -- remember, you are doing him/her the good deed of bringing your business to him/her, not the other way around.  In dealing with your allergy, stress needs to be minimized, since it can be a source of complication.

3.  Discuss the timeline for allergy testing, including an in-person review of test results.

4.  Once your test results are ready, meet with the physician again to review and understand your results.  Your initial meeting conversation revolved around possibilities; now you have definitive detail to discuss.  Solicit the details of the doctor's proposed care plan.  Will additional testing be needed?  Should a traditional allergy therapy be used to treat the condition?  If so, why?  Should a more radical treatment be used to treat or de-sensitize you?  Is this treatment covered by insurance?  What are the risks of one option over another?  Ask the physician if s/he would have his/her mother or child submit to such a treatment if that person had the same diagnosis.

5.  Ask the doctor to provide you a list of steps to take in the event that you find yourself experiencing anaphylaxis in a location that is not near a medical facility.  Knowledge is empowerment; and, in this case, it can mean the difference between being able to preserve lung capacity (calmness in the face of crisis) and suffocating (unbridled panic).  If medication (e.g.  an epi-pen, benadryl, prednisone) is required for any of these steps, make sure you get a prescription for each medication.  Review the list (as well as precisely when it is necessary for you to seek medical attention) with the doctor until you understand the sequence.  You should commit this sequence to memory because it may save your life one day.

6.  Go home and compare notes on the three physicians.  What did they say that was common?  What were the differences?  Use the Internet to help understand the differences -- do your research -- this is your life, after all -- no one will ever take as keen an interest in it as you.  Based on your comparison and your research, who seems to be most knowledgeable and qualified to fill this important role in your life?  Who is most authentic?  Who are you most comfortable with?  Now make your selection.

7.  Never forget that you are your best, most reliable health care provider.  Don't ever give up.

Daring.  Engineer.  Formidable.  Time to direct the mission.

Friday, May 13, 2011

Have a Plan

Have a plan.

First and foremost, calm your nerves.  Realizing that you have an anaphylactic allergy can be very unnerving... If you allow it to, it will unravel the fabric of your being... But you're much stronger than that... How do I know?  Well, all humans are 10,000% resilient -- everyone knows that.  The only thing we can't do is regenerate limbs.  Yet.

Once you've recomposed,

1.  Do some research to identify at least three respected physicians specializing in allergies (most likely allergists or allergy immunologists).  Identify a minimum of three so that you can
          a)  get a few opinions,
          b)  compare their answers and proposed approaches, and
          c)  pick the specialist with whom you feel most comfortable.  This could be a long term relationship (if you've ever been married, you know what that means -- if not, there's time).  Choose wisely.

2.  Before you meet with your short list of specialists, prepare an allergy dossier.  It should include information that will help the physician(s) piece together your history to lead to an accurate diagnosis (emphasis on "accurate" -- an inaccurate diagnosis can be as harmful as no diagnosis at all).  When putting together my dossier, I started by focusing on supplying the answers to the following questions:
          a)  What medical records do you have in support of the anaphylactic event you experienced?  What other allergy records do you have?  Incorporate them into the dossier.        
          b)  What other known allergies do you have?
          c)  What known allergies exist in your family?
          d)  What activities were you engaged in immediately before the anaphylactic event?  What were you engaged in immediately after?  How did you feel?
          e)  At the time of the event, was there a period of time when the reaction symptoms subsided, only to be reactivated later on?  If yes, approximately how much time elapsed in  between the initial reaction and the second (latent) reaction?
          f)  Create a food diary listing everything you ate on the day of the event.  Do you have any idea what caused the reaction?  Think back -- had you ever felt unusual when you had eaten these things before?  "Unusual" could mean numerous things... Perhaps you had an unexplained feeling of anxiety, an unusual rise in body temperature, hives, difficulty breathing, itching/swelling in the mouth or intestinal distress that had escaped your notice until now.
          g)  Prepare a list of questions for the doctor -- it is your body, and you have the right to understand how it is functioning and why it is functioning this way.
          h)  Research the physicians on the internet.  Make sure that they are credentialed and associated with reputable hospitals.  Read patient reviews -- be sure to read through the most negative reviews, in addition to the positive ones.  Extremes could be outliers/the work of those with agendas; however, reading both the good and the bad will help you get a more balanced idea of what it might be like interacting with the physicians.

Alpha.  Bravo.  Charlie.  Now it's time to execute the plan.

Wednesday, May 11, 2011

Strategy

"Strategy".

Great word.  Best word for describing the approach to creating a comfortable lifestyle in the shadow of anaphylaxis.  "Approach" is much warmer and cozier, but there is nothing warm or cozy about taking back your life from the seemingly random, mutant turn of one's immune system.

The anaphylactic lifestyle demands the exuberance required to finish a race against all odds.  It requires the stamina of a decathlete in the last leg... The commitment of a mountain biker on a snaking, North Carolina trail... The determination of a Chelsey Sullenberger, as he safely landed an airplane filled with passengers on the Hudson River ... The obstinance of a cow in the middle of the road you must traverse to get a woman in labor to the hospital... The resolve and courage of an Arthur, as he lunges at Mordred to preserve the balance of good over evil... The ferocity of a frenzied Attaturk... The patience of a saint... and the forgiveness of a Mother Theresa... For our bodies don't mean to betray us....

Everyone needs a strategy.  Strategy can be generally defined as

     *  A plan of action or policy designed to achieve a major or overall aim

     *  The art of planning and directing overall military operations and movements in a war or battle

     *  A plan for such military operations and movements

Make no mistake about it... This is a military operation in a guerilla universe.

Do you have a plan?