The more things change, the more they remain the same.

Do neurologist offices make it a point to hire front desk personnel who just are naturally intolerant to elderly or moderately incapacitated people, or do they budget for that as manditory training?

Do physician offices have contests and give incentives for the largest number of times they can get a person to ask the same question without ever giving an answer to the actual question?

Is it part of med school to teach all of the little, fresh faced, innocent pre-doctors how to make the most of a confusing case by throwing every known unrelated test in the world at it instead of actually using a bit of critical thought and basic judgement?

Are obscure tests taught in med school, not as examples of how far we have come, but as things they should still try first just because new tests could diagnose faster and with fewer total office visits?

Does “pain management” typically end up meaning “managing to get your pain patients to go elsewhere” even when you know the pain is real and the cause genuine?

Does it feel like every time you go to the doctor, your encounters with the actual doctor become fewer and shorter?

Are you happier when the only person you interact with during an office visit is the nurse who actually did read the information you sent on your illness and actually was intrigued enough to do more googling on her own?  And don’t you hate it when she leaves for greener pastures and you have to start all over with another nurse or PA?

Have you ever felt like taking a package of hearing aid batteries to an office visit to hand your doctor when she acts as though she didn’t hear what you asked or answered?

Do doctors sometime re-order tests, not because the results were inconclusive, but because they verified a diagnosis they didn’t want to accept because it meant more work than a different result might?

Seriously.  Ever wondered?

 

 

Deeply Disappointed.

I am taking a brief respite from the Porphland Survival List posts to engage in a bit of catharsis therapy.  indulge me a moment while I take off the tender and diplomatic kid gloves and replace them with the heavy, black,  vicious, verbal sap gloves.

There.  Ready.  I feel much better about this now.  I have dainty, tender hands and I don’t really feel like carrying around deep purple bruises for two weeks.  And these tend to be very good at keeping the proverbial gore out from under one’s jewelry and nails, a good point to know when one’s ultrasonic cleaner is on the fritz and someone has absconded with one’s nail brush for dealing with canine oral hygiene.  I do regret not being able to find the violet ones.  I love and miss those beautiful sap gloves.  They always went well with my glasses.

I want to say to each of you that at this moment I am incredibly angry with the way the boy has been treated by what once was his primary care physician.  After 3+ years of depending on her and her staff to provide adequate medical care for the boy, building what I perceived as a good working relationship with her through her staff, and doing my best to be proactive at home with nutritional and supportive care to minimize our use of her office time or hospital stays, we were delivered this coup de grace during his last quarterly appointment:

She does not believe he has porphyria of any sort and will not in the future provide accepted and necessary therapies or treatments based on a diagnosis of porphyria.

Those are not her exact words, but after having heard them as through read from a script on two separate occasions, that fateful day in an exam room and a subsequent late evening telephone call, you can be relatively sure that they are incredibly close to, and do sum up both the gist and the tone of her actual statement.

Interestingly enough, she offered no explanation of his symptoms, no alternate or theoretical diagnosis, and no indication of what she, as his Primary Care Physician, intended to do to find an easier to toss asside a more appropriate diagnosis.  What she did make perfectly clear was that until one of us magically shat one out and hung it in the Louvre in a rhinestone frame, there would be no hope of getting him any sort of maintenance therapy.

No D-10 infusion will be available to him as an outpatient, either in the hospital patient services area or in the big new freestanding infusion center in the neighboring upscale bedroom community.  No prayer of a chance of ever getting any sort of heme therapy, even if we as a household could afford it.

Under rather pointed and repeated questioning about her intentions toward making a diagnosis and what we needed to do to facilitate arriving at that diagnosis, she made very clear her belief regarding his illness:  it is either literally or figuratively all in his head.

(And a great deal of it is in his head, at least if you count up all of the damage he has sustained for lack of treatment.)

 

• It is a neurological issue or disorder that is somehow causing him to urinate the color of raspberry iced tea,
• It is a neurological issue that makes him consistently intolerant to medications and chemicals known to be porphyrogenic,
• It is a neurological issue or disorder that makes him intensely sensitive to relatively normal fluctuations in both his blood sugar and electrolyte levels.

It fascinates me no end how a person will dismiss the obvious in favor of the unknown when there is some incentive or motivation to do so.  What I would like to know is exactly what that motivation is.

There is the probability that the insurance company has brought pressure to bear to ignore the differential diagnosis and demand either a.)  the 1984 test results be presented to them by the hospital where the tests were conducted, by the researcher who conducted the tests, by the insurance company which used legalities to seize the records from the hospital, or by the boy who has tried repeatedly to get copies of the results only to be told they simply no longer exist, or b.)  we somehow manage to pick the absolute optimal time and circumstance for getting another round of testing completed and get new, improved, and conclusive results which one already knows will be disputed immediately however strong the results are.

There is also the possibility that the physician is streamlining her practice and purging the patients with more obscure, more difficult, more time-consuming, or require more effort to manage in order to concentrate on patients which can be scheduled routinely for maintenance more like the service center at a large automobile dealership.  It is, after all, much easier to hire staff qualified to provide regular oil changes than it is to have a staff prepared to do a valve job.

I do not know the ultimate reason for the indifference or for the complete disregard for a patient’s basic rights as a person.  The boy has the right to a reasonable expectation that his illness, disease, disorder, whatever it is called today, will be taken seriously and treated seriously and not second guessed when every sign, every family history, every symptom, every quirky reaction to triggers and stimuli both physical and psychological, every mason jar of light reactive urine sitting on the porch ledge point directly and conclusively to only one preliminary diagnosis:  An Acute Porphyria.

We know the family history points to AIP.  His sibling has a diagnosis of AIP.  His father has a differential diagnosis of AIP.

And what on earth is the reason for continuing to utilize a test which has been proven to be so horribly inaccurate that it is now not used as a diagnostic locations outside of the United States?

How many wonderful, talented, intelligent and loved men and women are losing their lives at this very moment, one nerve cell, one breath, one attack or crisis at a time  because of cross-purposes, apathy, arrogance, lack of education, intentional ignorance, ineptitude, poor planning, lack of time management, poor use of resources, lack of staff training, and the unavailability of practices, laboratories, and facilities with any expertise in diagnosing at the state level, not some arbitrary regional division?

Why does NORD and the NIH and the FDA not establish and enforce a requirement that every state-run or state assisted university with a medical school and a research laboratory must designate that laboratory as the state testing site responsible for the testing of all specimens submitted for the diagnosis of a rare disease or disorder by physicians and/or private patients residing within that state?  By placing all rare disease/disorder testing in central state university operated labs and diagnostic centers, you not only help people who cannot get to regional sites, you also educate more than three or four new people every year in diagnostics and give them practical experience.

Why don’t they require facilities such as these so that people already in physical, emotional and fiscal distress are not bound by the current system of rare disease and disorder testing and expertise being sequestered and contained in small core groups at a few  regional centers?

Why aren’t physicians who withhold treatment from patients with only a differential diagnosis held accountable when these patients finally do get a diagnosis that is “good enough”?  Shouldn’t they bear some of the responsibility for the losses these patients suffer while waiting with no hope of even a bag of saline?

I can’t write any more.  The more I do, the angrier I get, and I, at least, feel an obligation to the boy, which is more than I can say for his hematologist.

Vacations can be vacations again.

I do realize that today, August 20, 2011, is outside of the generally accepted vacation season for most people these days.  School starts their fall semesters ever so much earlier each year.  Employers don’t want to ‘give’ any more hard-earned vacation time than they absolutely have to and try to dole it out a few days at a time.  Spouses and other significants find it more and more difficult to coordinate schedules (see above).  Add to that the late summer heat that makes it almost unbearable for mere mortals to travel, especially for those who have any sort of health issue.

But it is also the start of the “I must get [tested][diagnosed][treated][enrolled in this study] season.  With little Bucky and Kitty going off to third grade, so too are their parents trudging back to grad school, and when you have people in grad school working on research, you have Research Studies and Clinical Trials.

Oh, joy of joys!  Soon thousands of sleep deprived, white-coated supplicants at the sacred altars of Knowledge, Enlightenment, and Fifty Cent Beer Night will be scurrying about, clipboards in hand, ID badges at the ready, eager to interrogate, poke, pinch, probe, and remove the bodily fluids of willing victims Believers.  And you, too, could be among the called, the chosen, the sacrificed.  You could be a Participant!

Or you could decide after a dozen failed attempts at a diagnosis not to trust your local lab any longer with something that important, make arrangements to drive a thousand miles or more to go to a more reputable lab, and take your specimens in their “sealed, original packaging” to be deposited appropriately after you arrive.

Whatever the reason for your travel, you want to make the best of it, not only for you but also for your traveling companions.  More importantly, you want to make certain that you arrive at your destination alive and not in need of immediate hospitalization.  To help accomplish this, here are some suggestions based on my household’s experience on a mid-July 5,000 mile road trip across the northern plains, high desert, several rivers and two mountain ranges during one of the hottest Julys in 100 years.

1.  Make sure that your pain meds are easily gotten at all times.  It does not help you to have them tucked safely and securely away in your locked suit case inside a locked trunk traveling at 75 miles per hour across the South Dakota landscape at any time of the day or night.  If you are that afraid of losing your meds, carry a second smaller set in your handbag or backpack or manbag and lock the bulk of them away in your luggage.  Just make sure if you do that you refresh your mini-stash before starting the next day.

2.  Make sure that you have some sort of tranquilizer or stress relief medication with you.  We all know, often from painful personal experience, that stress can be a very powerful trigger for porphyria.  It can be a worse trigger than some medications because unlike meds that require your conscious participation to build up in your system, stress can often times be out of your control.  You cannot control a vicious thunderstorm that strikes with a vengeance at 3 am on a dark highway in Minnesota.  You cannot control the stress it causes either.

3.  Make sure you have ziplock and wet cloth cold packs in a cooler of ice so that you can get to them and swap them out as needed.   I make these to keep around the house, to take in a cooler or insulated bag, even to take out into the yard when we are doing yard work or spending outdoor time with the dogs.  They are compact enough to keep in a small cooler or soft sided bag with those blue plastic frozen ice replacements.

Use an oversized washcloth or microfiber cleaning cloth or even a cotton bar towel or hand towel.  Fold it so that when you slip it into a 1 gallon size ZipLock freezer bag, it lays flat and fills no more than the bottom half of the bag.  Try to keep it as flat and bump-free as possible so it is more comfortable to you when you use it.  Pour about a cup of water into the bag.  press all of the air you possibly can out of the bag and seal it tightly.  Lay it flat to freeze it.  Stack several of them in your cooler under a layer of ice.  Keep a few close by in the passenger compartment of your vehicle.

4.  Keep a variety of juices and Gatorade on ice. Restock it as soon as it starts to thin out.  It is so important not only to keep yourself hydrated, but to keep yourself properly hydrated with fluids that satisfy your body’s need for electrolytes and carbohydrates.  Juices and Gatorade are, for the most part, the only safe and consistent fluid carbohydrate and/or electrolyte replacements easily and inexpensively available on the road, even in the most obscure gas stations along the most desolate stretches of interstate.

They are safe for washing down your medications.  They can be kept at room temperature until you drop them into the cooler.  They travel well, even over the Continental Divide.  The best part is that you can pretty easily replenish your “back stock” by finding a grocery store and picking up an 8-pack or two (often for little more than $5 per).  Some of the big, superstore type of truck stops even have them in multiples.

5.  Keep glucose tabs with you. You might not think they have much value, but they can get you through until you can get to an ER.  Put a bottle in the glove box, in your suitcase, in your carry-bag, and have one or more of your traveling companions carry a spare.  The backpack of our household Service dog holds one.

And for goodness sake, do not be stingy with them.  One tab is not going to do anything.  In a hard-hitting, fast onset attack, you’re going to need to take them 4-6 at a time, preferably with one of the cold Gatorades you have on ice in the cooler with your coolpacks.  Glucose, Gatorade, and cool packs across the back of the neck, over the shoulders, and on the center of the chest.

6.  Keep all of the medical records you have with you.  If you have access to the disc from your last MRI or CT study, take that as well.  Put these things together in a ring binder or what we old folks called an Expanding Folio or Wallet.

Make sure you have a page with all of your doctors with their office number, answering service number, fax number, address and specialty.  Also make sure you have the same information for the hospital where you receive any treatments or have been hospitalized or tested.  It is also a very good idea to have a page of links to any porphyria-centric sites that you feel necessary for finding the information necessary for treating you properly.

And don’t count on a flash drive to be nearly as effective as hard copy files.  Most hospital IS departments won’t even allow personal data storage devices to be plugged into the hospital network, so all of the information you carry that way is completely inaccessible and worthless.  They just aren’t as effective as a dramatic device or prop, either.  You cannot whip a stack of flash drive out with a flourish, start turning pages on the blanket of your gurney, point out from the depths of your medical records exactly what you have and how to treat it, and provide them with the phone number of a nationally known specialist (if you are lucky enough to have one) who will vouch for the fact that you cannot have barbiturates to treat your “imaginary pain.”

*sarcasm off*

You only get that with Paper.

7.  Pack a carry bag.  Michael has a WWII ammo bag, a 1920 Irish Army backpack, and a leather backpack that he can keep his meds, records, and a beverage in whenever we leave the truck or hotel.  Depending on how he feels, how much he plans to carry, or how far we will be away from home, he will pick one bag or another.  Any one of these bags will carry his records, his meds, a spare small bottle of Gatorade, a bottle of glucose tabs,

8.  When you plan your route, don’t just look for hotels. Make sure you know where the major hospitals are as well.  This is pretty self-explanatory.  Most mapping websites will show the hospitals along a route with a little tweeking in the settings.  If nothing else, you can search separately and make a list to print out.

Another thing to actively search out when planning your route are easy to get to malls, pet food big box stores that welcome leashed pets (especially if they have an in-house vet), and chain grocery stores.

9.  Don’t forget your cell charger. If you can get a car charger, get one.  A car charger is much more difficult to lose than one you plug into a hotel wall outlet.  Once you have plugged it into the lighter port in your dash board, you really have no reason to unplug it and remove it from the vehicle.   The last thing you need is to be 20 miles from civilization with no charge on your phone.

10.  Keep a box of carb rich foods.  It is oh so important to ensure that you can keep your blood sugar levels at a consistent an healthy level.  Glucose tabs, as important as they are for a swift kickstart when you are dancing on the line between attack and non-attack, are not meant for healthy maintenance.  That you have to do with diet.

Fruit cups, whole grain crackers, cookies, peanut butter, even dry cereals that are easy to eat with one’s fingers. Frosted mini wheats are good for an easy food, as well cracklin oat bran.  The pieces are large enough to pick up and eat like popcorn, but they are also small enough to be easy to eat with liquids such as milk or juice.

11.  Be the passenger. Don’t add the stress of driving to your trip if you have a competent driver with you who is willing to do the driving.

Most people wouldn’t dream of offering to do a bit of relief driving for the pilot on a cross country flight.  And most people wouldn’t give a serious thought to taking over the bridge of a cruise ship.  Do the same thing while riding in the car.  If the person driving doesn’t ask for help, don’t feel all sad and upset that they don’t.  Let them enjoy the drive.  Enjoy the ride.

12.  Try to keep as closely to your normal eating/sleeping routines as you possibly can. If you do like we did and shift it 12 hours, shift the routine as well.

13.  Avoid fast food. Picking up a few easily eaten things in a grocery close to the road is so much better for your system than the convenience of a BigMac or Taco Bell.  You can easily pick up the makings of a salad, some pre-cleaned and cut fresh fruit, even a bit of steamed fish fresh from the fish counter sometimes.  Toss in a small baguette from the deli, a drink, and perhaps a sweet roll or slice of pound cake from the bakery, and you have a lovely meal.  And for goodness sakes, don’t skip meals.

it doesn’t take that long to assemble a good healthy meal from even a small grocery if you know what you’re looking for.  It certainly is quicker to put together than going through the ritual of waiting to be seated, ordering, then waiting to be served that you go through at most sit-down places.

14.  If you have a gps, make sure it has as current info as it can. If not, mapquest like a mad fool before you go and take contingencies into account. If you can’t do that, get a good atlas and learn how to read it.

15.  Don’t do like we did and do 700 miles a day. That can be too much driving for some drivers, and entirely too much time in a car for the passengers and any pets or service animals, when you are not feeling well.

If you must do your trip as quickly as possible and have no choice but to do very long days, balance that car time with some walk time.  Try to do at least 15 minutes of time outside the vehicle every two hours.  More time is even better if you can.  Balance is good. Spread it out and relax.

#8: Get a Kick-ass Partner

As a member of a few Porphyria groups on Facebook, I have encountered a diverse group of people, some of them very much individuals, others not so much.  Each of them, with the exception of the non-affected caregivers, friends and family members, deals with one or another of the porphyrias each and every day.  Some do it very well.   Others, not so well.

The fiercely individual and independent people in these groups eagerly share quite a bit of information, take responsibility for their own day-to-day lives, read everything they can get their keyboards wrapped around, and maintain a strong sense of and pride in their individuality.

But one trait you will notice in most of them is the recognition and acceptance of the fact that no one can go through porphyria alone.  Each of them has developed a strong partnership with another.  They have found a Kick-Ass Partner or a group of Kick-Ass Partners for their journey through Porphland so that someone always has someone elses’ back.

Having a partner is your best way to having someone close to you who really does have a pretty good understanding of not just the mechanics of the disease, but also of its effects on you as a person, as a living, breathing, feeling, thinking human being. 

A partner in porphyria knows about the frustration of finding a qualified doctor, much less getting that doctor to truly understand your symptoms.  He or she knows what it’s like to wake up in the night three times because you didn’t eat enough the day before and your body is demanding carbs before it lets you sleep.  He or she knows first hand those moments when the big buggy masses start buzzing around your field of vision, the ringing in your ears turns into a monsoon on a steel roof, and your gut begins to feel like an extra in the movie Alien.

He or she knows how hard it is to get coworkers to understand that just because you look perfectly fine, you are struggling to keep your arms and legs from flailing about as though you were a pinned bug.

Your Kick-Ass Partner could be in the same bed, or on the same block, in the same city, or state, or could even be thousands of miles away and only visible as a line of type and a small icon on your monitor.  He or she stands up for you when people act like fools, and stands up to you when you return the favor and play the fool.

A Kick-Ass Partner has always got your Six. 

One thing you may notice about people who have a strong, independent nature and a partner who reflects that is that they tend to be pack people, not herd people.  They may have pretty strong opinions that are not shared and they will discuss them candidly, but it doesn’t drop to the level of nonsense. 

They work for the betterment of themselves and of the pack, but not if it means blind alleigence or group-think.  You won’t find sycophants in Kick-Ass Partners.

You certainly won’t find sheep.

Sheep are tasty.  They certainly don’t make good Kick-Ass Partners.

#17: Pack your glucose

One of the things that researchers have found about porphyria attacks is that glucose levels in the body both influence and are influenced by porphyria.  Have an attack, your levels drop.  Let your levels drop, it causes an attack.  It’s like a vicious loop.  A really bad record with a scratch.  Even a bit like early Phillip Glass where he manipulated the spoken word.  Over and over.  And over.  You know when it starts you’re not going to like it, and the longer you let it go, the worse it gets.

This is one of the things that you do have a small amount of control over in your day to day life.  If yours is like my household, you keep cookies, various breads, ice cream, fruit, juices, pudding cups, etc around so that there is always something easily found to eat and potentially stave off an attack before it reaches disasterous proportions.

But what do you have when you leave the house?  What do you have out in the yard, or in the car, or on the bus?  Where can you reach quickly and find the sweet relief of a sugary bit on a dark and deserted highway between far flung exits?

Why, your backpack or purse, of course.

How you accomplish this is entirely up to you, but in the great scheme of things it is simply the responsible thing to do for yourself and for whomever else is around you at the time of a sudden onset attack, regardless of the type, sub-type, or variety of porphyria.

What we have done is place the large bottles of glucose in the glove compartment of our vehicle, in his wife’s or my oversized purse, and in the vintage 1920 Irish Republican military backpack or Vietnam era ammo bag he carries when we leave home. 

The good thing about the glucose tabs made for diabetics is that they are stable and require no refrigeration or special handling.  When he begins to have that bad feeling, he takes six of them in quick succession with gatorade or juice.  One tablet is worthless.  Six can make a difference.

Another thing we keep in the vehicle when we are going to be away from easy access carbs are the packs of crackers and peanut butter or cookies that can be found boxed by the dozen in any large grocery or big box store.  Not only do they contain a decent number of carbs in a pinch, they also tend to have a bit of sodium and can have a calming influence on a tender tummy.

Graham Crackers and ‘Nilla Wafers can easily survive a short life trapped in a ziplock bag in a backpack or purse.  Granted, vanilla can be a triggering substance in some people, so your own self-knowledge will tell you if this is the carb for you.  If not, there are other options that do as well:

• Ginger snaps (good for nausea too),
• Wheat Thins,
• Powder Sugar Donuts,
• Reeses Peanut Butter Cups,
• Kit-Kat Bars,
• Hard Candy.

Now remember, this is the list we use in my household.  These may or may not work for you and yours.  No one knows better than you what you can and cannot tolerate.  The important thing is to have something, and to have it in quantities that will make  a difference.  One LifeSaver will do nothing.  A roll of them can take the edge off of your carb need.

But what about something to wash it all down?  What about something that can bulk your carbs and bring down your core temperature enough to slow down the carbohydrate metabolism that causes your attacks?

The obvious answer is cold, sugar rich beverages, but there are actually quite a few to consider.  What we have found is  that the smaller bottles of gatorade travel well and can be popped in the freezer for a while before putting them in your pack.  They replace electrolytes, very important for the AIP porphy, and pack a decent sugar load.  Also, by freezing them first you can also use them as ice packs to bring down skin temperature.

Gatorade also makes a really good product called “Recover” which looks and tastes for all the world like chocolate milk.  It is a post workout carb replacer for athletes and worked really well when used in my household.  It is not quite as versatile as the frozen bottles of traditional gatorade, but really does the trick.

Juices work really well, but you have to watch which juices you drink.  Some juices are, for lack of a better term, sugar metabolizer boosters.  They tend to be advertised as juices for dieters and such.  And as good as they taste, and as much as you like them, it’s really not a good idea to have them packed in a Glucose Rescue Bag.  Acai, pomegranite, mangosteen and others actually seem to boost metabolism, which is great if you’re trying to lose weight and lower your blood sugar.  Leave these at home for small rewards if you cannot live without them completely.

Juices we have had very good luck with are simple things:

• Apple,
• Pear,
• Pineapple,
• White Grape (within limits if there is nothing else available),
• Peach (especially the thick, sweet nectar),
• Coconut Water (sing its praises),
• Mango.

Make sure that any juices you pack for your survival kit are refrigeration-free and safe at room temperature until opened.  Read the lables and make sure they are as low in additional chemicals as you can possibly find.

Good day, Zelia.

During the process of my nearly daily search for information and support materials on my boy’s AIP, sometimes I find little gems.  Today was one such day.

Over in the links section you will see an addition to the blogroll, Zelia’s Heart on Pacemaker and Porphyria in SA.  It is a lovely blog by a woman with Variegate Porphyria which manifests with both cutaneous and acute symptoms when attacks occur.  In fact, she has a post about her variation of porphyria which is very well done and as or more informative than some of the “professional” porphyria sites provide. 

Go.  Read.  Learn.  Become informed.

Apologies for the cross-post

There are those who will will whimper and moan and complain that this tired old Mistress is at it again, complaining about the behaviors of others and making judgements and being all strict and inflexible and…

And there will be those who read this and think long and hard about the repercussions of their own actions or inactions, involvement or apathy, in situations which would appear to be far removed from the one discussed in this article, but are only removed by varying degrees. 

I apologize in advance to Mr. Millar for not taking the time to gain his permission for reprinting a portion of his article.  It was poor form on my part, but the message was too important not to relay. 

“A Few Declarations Of Ethics:”

“Though this doesn’t present a close question at all, inevitably people look for clarity. What is it that happened here that was unethical, as we see it? If I get into specifics, there’s almost too much to list, so I’ll keep it general:

“(1) It is unethical to ever have an irrevocable Master/slave relationship. Here in the United States, we wrote it right into the Constitution in the aftermath of the Civil War that slavery does not exist. All dominant/submissive relationships, no matter how strict the rules, no matter what kind of written agreement there is, no matter how extreme the sensation play, are subject to the submissive partner deciding the relationship is over. We killed 660,000 Americans for that, and it’s not negotiable.

“(2) It is unethical to leverage an existing vulnerability or power imbalance to push someone into any kind of dominant/submissive relationship. Nobody should be pushed into a D/s dynamic at all; it has to be freely and consciously chosen to be consensual. This girl, when she fell into his clutches, was a sixteen year old runaway from a series of foster homes, which means she was extremely vulnerable and had no place else to go. Right there, any sexual involvement is just wrong. Then, he became her source for drugs. By the time she signed the contract that he said bound her for life, she was an eighteen year old with no other options, possibly a substance dependency, in an abusive relationship with a terrifying person. She wasn’t in a position to say no to anything he wanted.

“(3) It is unethical to do things beyond one’s capabilities as a top.* And this is one of the places where, even if we didn’t know any of the other stuff, we could tell the difference between abuse and BDSM. BDSMers don’t want to damage their partners. Hurt, sure, sometimes a lot. But we don’t want to do things with each other that result in unintentional injuries. We like each other, we like what we do, and we want to have good experiences, so we control risks as much as we can and still have the experiences we want to have. Like mountain climbers. Not like abusers, who ignore risk and cause injury on purpose.

“I said the physical specifics didn’t make me blanch, and I meant it. I won’t gratuitously repeat the detailed descriptions, because they’ll be offputting to some readers. Some of those things I’ve done and some I have not, but I know sane people who have willingly done a whole lot of things in that indictment. The thing is, they’re highly specialized skills. Among people who know what they’re doing, a lot of this stuff is considered appropriate only for people who really know what they’re doing. Responsible BDSMers don’t just hang someone from the ceiling; they learn suspension bondage. Responsible BDSMers don’t just hook electrodes up to people; they learn electrical play. It’s easier to do that in communities where there are classes or more experienced folks to teach; but more isolated people can access books and online materials and do their own research. If they care about their bottoms, they do. Being a top is a lot of responsibility, but it’s worth the work to have the big, moving, out-there experiences and walk away from them with no more boo-boos than intended.

“People who don’t do the homework don’t care. The indictment contains some things which just flat should never be done in a scene and constitute medical care. It also contains things that are heavy medical play. With an amazing top with a background in medical scenes and piercings, with autoclave-sterilized equipment, in a clean environment, those things are some people’s idea of an amazing scene. But it’s not something you see on the web and say, “hey, go get the Neosporin, I want to try something.” No ethical top plunges cavalierly into things that carry a high risk of injury, and it really announces that he didn’t care if he did permanent damage.

“Breath control and certain kinds of electrical play, done wrong (and depending on who you think it right on the medical stuff, maybe even if done right) can cause cardiac arrest. That’s what happened here. Some combination of electric shock and suffocation stopped her heart and the hospital saved her. I’m guessing he didn’t really care about her, but thought his chances of getting out of it with a live kinky woman accusing him of abuse were better than his chances of hiding the body and pretending he didn’t know where she was. We’ll find out if he was right.

“(4) It is unethical to do things with newbies that they don’t understand and can’t make decisions about. If they don’t know anything yet, they don’t understand the risks and cannot give meaningful consent, which is at the heart of RACK and SSC. (I don’t need to get into the difference between the terminology, as the culture of which term people use varies somewhat from the literal meaning, and a lot of it has to do with who gets to be the safety police.) Getting someone to do things that they don’t understand is neither risk-aware, nor safe, nor sane, and generally isn’t consensual. If someone is just too ignorant to fully grapple with the risks they take, that’s negligence, and that’s full of fail. But the allegations don’t paint a picture of someone who didn’t understand the risks. They paint a picture of someone who didn’t care. That’s an abuser.

“This is especially true of introducing a teen to BDSM through a 24/7 relationship. I’m not a big fan of 24/7 anyway. Lots of BDSMers have no interest in ever doing dominant-submissive roles. Folks who do D/s have clear boundaries, often time limits on the scenes. Many who have pervasive D/s dynamics in a relationship live apart, which inserts a certain amount of breathing room. A few folks really have those power dynamics in effect basically all the time, but that’s a very hard thing to do and make work, and people generally only try that when they already know a lot about D/s and how they react to it emotionally and undertake it with the understanding that it’s a very, very advanced. Leaving all the other things aside, taking someone with no BDSM experience and saying, “24/7 slavery, that’s what BDSM is” … that’s delusional, evil, or both.

“Responsible BDSMers, when playing with newbies, are extra-careful about the basics, like negotiations and safewords – not only because newbies don’t know how they’ll react to things, but because they don’t know how to do things like negotiate yet and they need to learn. Someone teaching a new submissive needs to teach zir how to set zir boundaries, how to communicate with a prospective top about desires and expectations. Not doing this means virtually guaranteeing that something will go wrong, if not in the next scene then at some point in the future.”

Do take the time to read and digest the comments attached to Mr. Millar’s piece. 

This is how we learn.  This is how we become more informed and responsible, not just inside the confines of an old steel shed with a winch and cable, or a deceptively plush master bedroom suite with silken cords and used needles scattered on the nightstand, but out at events and small house parties, munches and meetings, sloshes and arranged meetings.

Ms Lila

jane’s statement

My girl, jane, was removed from the IMAS members group before she could post her final statement to the membership regarding the SSP decision announced to us tonight.

Because this needs to be made available, I am posting it for her now.

This is my fourth and unfortunately final post to this group.  Some of Y/you will be overjoyed with this information and some of Y/you will be saddened.

Tonight i found out that i was found not guilty of SSP etc etc.  Ummmm…..gee….since i was the victim of someone why was i found not guilty?  i was the one attacked yet the P/people investigated me?  What did i do except bring SSP charges against someone who attacked me?  This is only my fourth post….did it take Y/you this long to scrutinize my 3 posts in this group?  i don’t get it.  oh….and by the way….thanks for letting me know that i was under investigation and another thank you for interviewing A/all involved to come to Y/your conclusions….oh yeah that’s right…..YOU DIDN’T!  at NO TIME was i EVER contacted personally and told that i was being investigated.

Regardless….my faith in this group is gone.  my hopes of a new and better IMAs with the upcoming elections is gone too.  Even if i got to stay and vote….i would have no choice but to put the words “NO CONFIDENCE” by each of the Candidates running that i know were involved in this.

Y/you know….what i have understood about this lifestyle is that TRUST is a big factor.  Whether Y/you are playing with S/someone for the first time or that Y/you are in a committed relationship with a P/partner….Y/you must trust W/who Y/you play with.  This household TRUSTED IMAs to come to the correct decision for U/us…..it didn’t happen.  This household is now devastated.

A/anyone that cared about U/us through this and truly knows what is going on in this household….i thank Y/you.  As Mistress has told both mike and i….W/we will move on.

Utterly devastated in what damage this has done to Mistress and pleasure…

-Jane

pinned_butterfly@yahoo.com

ps….Mistress and my resignations were IMMEDIATELY accepted within 2 hours of Her post.  Funny.  i thought it would take at least 3 months for that decision to be acted upon.  Just saying……

Resignation

When the April notifications were sent to michael and I about our suspensions from IMAs, I stated that we would not be appealing the decision of the board.  In numerous telephone and IM conversations, this fact was also stated.  I made it clear that although a part of my heart wanted badly to appeal the board decision in order to force the light of a public inquiry into an obviously bungled and prejudiced process, first decision was to give IMAs what it wanted.

Our suspensions and removal were what IMAs wanted if you believe that the members of the board are elected to serve as a representative governing body which voices the wants and protects the needs of the membership above their own personal wants and personal protection.  It was what IMAs wanted if you believe in a board with high personal ethics, unwavering integrity, and a respect for each and every member.

But if IMAs the organization, IMAs the membership did not want such a decision, then the process used to convict and sentence us was flawed and those who acted to convict and sentence are not the ethical, respectful and honest representatives that the membership placed on the board by their votes.

The panel which was assembled and charged with further investigation of the charges, the evidence and the circumstances surrounding the charges against us and against other individuals is something I never requested of anyone with whom I spoke after the notification of suspension.  It was discussed but neither requested nor demanded of any person on the board.  That was fully the decision of the board.

During the time since the panel announcement coupled by the announcement that all prior decisions had been rescinded pending the panel investigation, the events prior to and after this decision have damaged every single person within this household, possibly permanently in physical, emotional, and interpersonal ways.  In spite of the decision and sentence having been rescinded, we were still no longer given the access to the group unmoderated access to the group.  Inquiries about the effect of a resignation on the process went unanswered.

It was our sincerest hope that the panel would be seated, not with the idea that we would be vindicated but that those involved in the precipitating situation would be forced to acknowledge their actions and to live with appropriate repercussions for these actions.  This I now know will not be the case.

It was also our hope that IMAs would learn from this situation the danger of placing too much trust in individuals who misuse and abuse their positions to further strengthen their own hold on the organization through abuse, slander, and intimidation, who use information given in trust as a weapon against individual members, and who pit member against member in an endless history of in-fighting and chaos for the benefit of distracting the membership from their own personal actions.

So be now notified that the following member are by this email giving notice of their resignation today, Monday, August 30, 2010:

Lila Meyer/Mistress Lila
Jane Widing/pinned_butterfly.

We are a household.  We live the way we live as a single entity, indivisible.  If one is no longer acceptable or welcome for his or her actions, than none of us is acceptable or welcome and will no longer be a party to IMAs.  This holds especially true when what was done was for the integrity and honor of IMAs.

Nothing is worth what this has done to michael, to jane, to this household, and by these things, to me.  Those who remain, those who chose to fight this on their own, should do this now not on our behalf but for the remaining membership, especially those somehow tainted by their association with or support of this household.

I will no longer fight the enemy outside of my house.  The battle within is much more important than the battle without.  The ever accumulating damage to michael’s body and psyche, the physical pain he endures that cannot be adequately managed under these conditions,  the sleepless and tormented nights and compromised health of jane and I, the fractures between us as individuals and as a family, the emotional pain this brings to us all are more than we are willing to pay for a potential future IMAs under different leadership.

I can no longer support IMAs, nor can I in good conscience encourage or direct community newcomers to consider IMAs until such time that IMAs can prove its desire to rid itself of the destructive elements within and exclusionary policies which enable them.  I cannot and will not support IMAs until its integrity and honor are restored and the dishonorable elements are removed.  I cannot and will not support IMAs until I am convinced that it is no longer a danger to its own membership, to my own household, and by these to the entire community.

And with this the burden is lifted from our combined shoulders and we will move on.

Mistress Lila
Jane Widing

Is it Assault?

 If you have a sensitivity to a particular chemical and have taken the time and made the effort to inform those with whom you interact on a daily basis about this sensitivity, is it assault when they continue to use it openly (and often heavily) in a shared (poorly ventilated) environment? 

If someone tells you they have severe food allergies and cannot have contact with any one of many common foods, several of which are favorites of yours, is it assault when you insist on adding it to their diet?

If you have made it very clear that the scents added to cleaning products, detergents, room deodorizers and perfumes make you cough blood, is it assault when coworkers who know insist on using or re-applying these items at their desks?

Are they assault?  Or are these acts of battery?  True, a can of Lysol may appear tame by comparison, but is it any less a weapon than a knife when used near a person with a porphyric sensitivity to the chemicals contained within that product? 

Over the last several months my submissive has been subjected to a high level of stress by individuals of rank, status and prestige within the local community.  My submissive has been fighting acute intermittent porphyria for many years, something he has shared with very few people because of general ignorance and lack of information of the disease.  As a result of the stress of dealing with the hostility, lack of cooperation and dismissive attitudes, what once would have been a week-long flare-up of his porphyria has now lasted over 10 months.  Truth be told, it is closer to a year if you look at the slowly escalating symptoms of August and September 2009.

I have been much more vocal about his situation than he, particularly with those I believed were simply acting out of ignorance in their communications with him.  The damage from the biochemical imbalance, inadequately disclosed by his neurologist at the time but appearing for all intentions at the time as a series of strokes, had compromised his communication skills, damaged his “social filter,” and skewed his perceptions of others’ intent in their communications with him.  This was all explained to those he perceived were baiting him, ridiculing him, or being dishonest with him in what he perceived as misleading, untruthful, or evasive online posts. 

Continued communication was encouraged with these individuals on the grounds that my boy had shown improvement in his concentration, thought processes and communication abilities as a result of the give and take prompted by his inquiries.  I went so far as to thank them for taking the time to answer his questions, as persistent as they were and as repetitious as they seemed, because it encouraged him to read his emails and respond to them after being unable to do so for many weeks.

PLEASE NOTE:  Great effort is being made to preserve the anonymity of all of the parties involved in this situation, including but not exclusive to the names of any individuals, organizations and locations involved in or periphery to the situation.  Any resemblence to actual persons or organizations is either purely coincidental, damned lucky, or the product of privileged information.

Some of those with whom the boy was conversing took it to heart and truly tried to engage him humanely and respectful of his position even if they did not agree with him.  Others, however, seemed to take this information as an intelligence report on an insidious and much hated enemy.  It was weaponized, exploited as a means for discrediting and demonizing a questioning voice and for shutting down discussions they did not want to have about a topic they did not want discussed in a forum. 

The tone of the public discussions turned from one of mild annoyance and impatience to one of snarky, pointed, often sarcastic comments and veiled ridicule.  Little jabs and provocative statements were made and directed at him and any who were seen as supportive of him.  Attempts to defuse or redirect were met with defensiveness and often were restated in such a manner as to call attention to the boy’s difficulties or to victimize themselves.

What began as a mild disagreement last fall slowly built until early spring.  At that point, like the crocus and the tulips in the last wisps of winter snow , it erupted from darkness and splashed across an already skittish membership.  Dissent was punished.  Loyalties were tested.  Friendships were strained or slowly bled out of existence.  Exchanges between the boy and those who were trusted to know better grew increasingly provocative and confrontational.  The pressure on his system increased.

The boy’s porphyria attack worsened under the pressure and with it all of the resulting damage: 

tremors,

neuropathy, 

worsening of the encephalopathy,

visual and auditory hallucinations,

pain,

double vision,

impaired balance,

staggering,

loss of coordination,

increased loss of gross and fine motor skills,

loss of short-term memory,

confusion,

dizziness,

worsening ringing in the ears,

light sensitivity,

inability to concentrate for more than a few minutes at a time,

difficulty with speech,

nausea,

pain, pain and pain.

The list grew on, and as the list increased, his disease progressed and his physical and mental states worsened. 

We did our best to defuse the situation, the girl and I.  Good friends stood by us, pointed out the nakedness of the Emperors, and did their best to soften the tone of the rhetoric.  We tried humor, only to see it reacted to as though we had launched an attack.  We tried cool logic, only to have it pooh-poohed or twisted into something nearly unrecognizable.  We even tried simply rising above it, one of the most difficult tactics for the boy, but to no avail.

Each time tactics changed, the stress level increased and symptoms worsened.  The worsening symptoms increased the pain.  The increased pain caused more problems with thought processes.  The increase in intellectual difficulty caused difficulty communicating and increased frustration, which in turn caused misinterpretations of posts, poorly filtered responses, and fuel for the fire of those who delighted in provoking him and adding to his distress.

WORD OF CAUTION:  Do Not allow yourself to be lured into a so-called Private Email Exchange for the purpose of having a mutual blow-up, burying the hatchet, then moving on.  The likelihood that all will be forgiven and forgotten afterward is about as high as those for winning PowerBall, MegaMillions, the Massachusetts Lottery, and being stuck by lightning all in the same month.  Even disclaimers and stated agreements to the contrary will not protect you from backhanded punitive actions.

Yes, at some point the boy and one of the Antagonists agreed to an exchange of emails, a private conversation which was to remain a private conversation, to enable the two of them to either work things out and come to some mutually acceptable arrangement or coexistence, or to provide a mutual outlet for an angry exchange that should have cleared the air.  The Antagonist emailed that he would only do so if I were copied the full exchange, a condition to which I agreed.

What transpired was a unmittigated disaster.  After what the boy and I felt was an agreement by the Antagonist to conduct this exchange confidentially, an agreement implied by his continued participation in this exchange, the Antagonist chose to use this exchange as yet another weapon against not only the boy, but apparently also against this old Mistress (one can only guess, as no official statement has been presented), for violations of the Antagonist’s safe space.

Broken down to it’s essentials, my boy, my collared submissive, was duped.  I was also duped by an individual I had once trusted, respected, and included in a small cadre of individuals considered better than mere acquaintances.  A very heated exchange, taken out of context both as a written document and as part of a much greater timeline, will now determine whether or not I and my household will be “permitted” to remain members of a social group or to attend its  periodic events.  It could also very well determine the health of our Lifestyle group, one which never competed with this social group but actually worked hard to grow the social group by referrals and suggestions to our membership and others. 

In fact, when this situation first exploded across the monitors of individuals both interested and disinterested, a suspension was handed down from on high by the Antagonist, a second Antagonist, and their fellows, trusted individuals of rank, status and prestige within the local community.  Both the boy and I were found guilty of violating the warm and fuzzy utopia that was the Antagonist’s universe and were thereby removed.

Had things ended then, we would have moved on and it is possible that the boy’s body and mind would have had an opportunity to heal without the additional stress and strain of contact with the Antagonist and his cadre of minions.  We could have set to work scraping the blood and fecal matter off what remained of our reputations and immersed ourselves into developing the bylaws, membership and activities for our own group.  In retrospect it truly would have been the best thing for all involved and uninvolved yet still affected, but as dictated by cliche, the best laid plans of mice and men, etc, it was not to be.

Against our wishes and my better judgement, persons not directly involved in the situation stepped forward and through methods only those involved should discuss forced the aforementioned Antagonists and trusted individuals of rank, status and prestige to select a disinterested and ethical committee of members to investigate all of the charges being lobbed about like incendiary grenades and to make a decision (or several decisions) based on their findings.

That, dear reader, was in April.  Today it is Saturday, August 28th and at this point we have seen the following progress:

1.

2.

3.

My boy has finally resigned his membership in the local organization involved in his physical and mental torture and he did so very publicly. 

My girl was attacked and impugned both in a group posting and further in an email by an individual, and we are still waiting for a decision from the committee on this extremely simple and incomplicated complaint.

The girl and I work hard every day to keep the boy as happy and free from stress or pain as we can.  The illness progresses ever onward, sometimes slowly, sometimes more quickly, often in very unpredictable ways.  He can be perfectly fine and laughing and and playing with the dog one minute, then curled up on the couch in the dark with tears in his eyes from the pain the next, and there is no way to know when these episodes will begin or end. 

The Antagonists remain individuals of rank, status and prestige in the community, even to the point of expanding rank to include a leadership role in a local commercial venture geared to kinksters and fetishists. 

Other individuals of rank, status and prestige in the committee have been and remain uncommunicative.  One can imagine that they are doing their best to put forth a face of calm and unity without any taint of favoritism or familiarity.  Or one can imagine any number of things. 

Persons who have stood by us have found themselves subject to virus and bot attacks, forced to nonconsensually spam the world.

Others persons we have held as very dear have been pulled away from us by duty, by allegience, and even just by happenstance, and they are missed terribly.

There is still no course of treatment for my boy’s porphyria.  The pain is often unrelenting, and all that can be done is make him comfortable and get him to his appointments.  We wait for the day when someone looks up from behind a chart or laptop with a smile and a sparkle and tells us they have a miracle for my much loved submissive.  It will never happen, but I can still dream. 

We will know what we will know only when the time is right.  Until then, it is all speculation and worth nothing beyond a moment’s entertainment.  But one must still ask one’s self the initial question:  are words on a page, words known to trigger a situation which provokes a profoundly negative response in someone’s health and well being, merely words on a page or are they an act of assault when used with a calloused disregard for the life of another?