Prepare to enter the wild and wooly world of an adult with Aspergers Syndrome, a form of autism characterized by intellignce, quirks, social difficulties and downright strange and oddish behaviours.

People with Aspergers generally are high functioning in everyday life but have great difficulty connecting with others due to the inability to read faces, body language and subtle verbal clues. They also tend to take words literally and have a hard time multi-tasking.

Oversensitivity to touch (clothing has to be soft and often the tags removed), light (do not leave home without the sunglasses), sound (loud noises and noisey places are avoided), taste (many Aspies have quite a limited diet and are frequently very picky eaters) and smells makes the everyday existence more of a challenge.

Fasten your seatbelts and come on in...
To find out more about what Aspergers is..please check out my earliest blog entries

Thursday, March 24, 2011

Inside My World

Sometimes people say the same thing over and over and fail to ever really explain what they mean.
Frequently, I have been know to say "that I live in my own little world". I think that deserves an explanation. Lets' go there....
I live largely within a world of thought, memories, possibilities and emotations. Its like living in a very large room that is filled with loops, streams, fragments and spheres. At times, it seems very crowded and different shapes vie for my attention. Frequently one of these small floating arenas engulf me and I become engrossed, almost trapped and have a hard time escaping whatever thought or memory has captured my attention. Each shape contains either large or small bits of information. Mostly, I sit back, within myself and am analyzing.
Frequently, I am sure it appears, that my eyes have glazed over and it appears that "no one is home". At those times I am all inside...sometimes pondering, sometimes escaping whatever reality is outside of me and taking place.
Various things, such as "what was that conversation about yesterday" "can I remember it word for word?" "what was meant by thus and such" "did I convey what I needed to?" "when I said thus was I heard?" pertain to previous, mostly recent, conversations. Often, hours or days later, I find things that I missed in the conversation..sometimes very important things.

I have very little interest and awareness of the world outside of myself. I have a very narrow lens and rarely notice things, people, situations, words or ideas, that do not pertain directly to me. I have no interest in false gods, celebrities, current tv programming, popular culture, the latest novel, gossip of any kind, predicting the future or where I want to be five years from now, who is dating who, what the most popular song was in 1952, the latest diet or exercise craze, fads of any kind, and hypothetical what ifs.
The majority of my waking life is consumed with how to get through it, my home, my castle, my friends and my family and keeping myself functional. That takes up about 98% of my every day. Seriously, I wish it were only some bad joke but the vast majority of my day is actively engaged in basic functionality.

Words are mutable things of varying caliber, degrees and with a plethora of meaning depending on context, stress, the particular speaker and the spirit in which they are said....very complex. I can easily spend days analyzing a five-minute conversation....easily. For I do want to understand and just doesn't come easy.
Having to spend so much effort figuring out the words, leaves little time for glances and observations regarding facial expressions and body language. I am simply too focused on the words.
And, yes, most people speak at a normal rate of speed that is far too fast for this and other aspies. Either my word processing program is running too slow or I am actively engaged in trying to remember everything that I need to say and searching for pauses in the chat.
I can spend hours planning a five minute conversation for, say, the next day. I have to figure out my points, what is important and put it in a presentable cohesive, easy-to-understand manner.
Lost in thought...yeah, I am frequently there but it has purpose.

So say that I live in this very large room with floaters. I stand in the middle. There must be a door here somewhere for a connection to the outside. Sure, there is one over there on the right. One small doorway that opens to a very narrow, steep, twisty-turny hallway that is about a mile long. (Yeah, I am usually pretty hard to reach.) Every now and then someone ventures down the hall and knocks at my door...Most of the time, I simple do not hear the knock.The depths, focus can prevent that. Sometimes I do and ignore it. I think, most often, people arrive at the door, sense the...depth and treacherousness of the hallway and fear actually knocking. Can't say that I blame is a most unusual stride to the door.

When I venture view of the world outside of myself, outside of my physical home...
To be honest, its a war zone...a chaotic, ever-changing, daunting and somewhat dangerous place full of unpredictability, unspoken expectations, unwritten rules and a constantly changing landscape of mountains and pitfalls.
I constantly seek safe zones and safe people. When that doesn't work, I resort to using pre-approved patterns and manners of walking, behaviors and mental games to get me from point a to point b.
Stepping outside is sensory overload, pure and simple. Its an assault of the senses, a mental maze and all systems up and running, a time of high alert.
The highest variable is people."Who will I run into?" "What will I say?" "What will they ask?" subject matter, mood, will I be able to read them?
Some days I avoid most people..other days I seek them out.It just depends.
Mostly, life is a wicked game of survival..figuring out the bare minimum of what needs doing outside and staying mostly in. Venturing out requires a great deal of pre-planning and effort.
Little things are big things for the aspie. As an example, one of my current dilemmas is something so small,so simple, so not-an-issue for the nt that I hesitate to mention as I am sure it will induce ridicule and absurdity on some level. I can't find a pair of socks to buy that doesn't feel like sandpaper on my feet. I had a dozen pair of the most perfect of socks, all cotton, black, medium weight and they fit and felt just right. Well, I went and wore them all out, getting holes in the heels and had to start pitching them in the garbage. When I was down to one or two pair, I went to the local store where I had purchased them to stock up. Lo and behold, they no longer exist. While they carry the same brand, they have introduced lycra and form-fitting alterations that pinch and do not feel right. I spent that day going to every store in town in the simple and futile attempt to locate a damn pair of socks that i could wear with ease. They no longer exist. My search continues....Yeah, I want so much from life...a damn pair of socks..and no where to be found.
The everyday task of cooking a meal is a complex endeavour. First off, I have to figure out what everyone wants and is willing to eat. Then the grocery list and actual shopping. Being in the kitchen, cooking a meal is a multi-step event that needs careful planning. I frequently talk to myself to help keep me on task and remembering what the next thing is to do. There are also three separate timers that help guide me and keep me from burning and overcooking things. More than once, our smoke alarm has signaled "dinner ready". The average meal probably takes me twice as long to cook and is just another stressful event to try and muddle through.

I like my world inside, mostly due to its low-stress and somewhat predictable nature. I don't have to perform and pretend to be normal. The sometimes overwhelming stress of outside reality will literally throw me into my space so deeply and with great fervor, that its like being locked into a closet. It gets dark and I can't find the door handle to get out even if I wanted to.
The predictability, the patterns I create are so that i can actually have moments, yeah maybe a moment or two where I don't have to actively think. Because the majority of my life, my everyday life, is spent in the thinking process, just trying to get through the day. This is so not a normal, neuro-typical is so much more work. Some day, I hope to convey that in a depth, meaning and way that doesn't sound so self-pitying and depressing because it is an important point.
You have no idea the sheer amount of work, effort and stress that is required for this aspie to get through an average day. It truly is impossible to fathom. I have great admiration for those aspies who can actually hold down and maintain a job, even a part-time one.
As for parenthood, knowing what I know now,I probably wouldn't have done it. It has not turned out very well. I think my kids suffer needlessly do to my inability to be outside my head and much more aware of who they are and what their needs may be. My focus is so extremely narrow, my introvertedness and hermitage like existence has not allowed me to see their weaknesses and areas needing assistance. My central focus of survival has not helped them in any way, shape or form and having kids was not a really good decision.
But here is where i am....this is what needs doing.

And people ask, I kid you not and this is rather novel...People ask how they can help an aspie. (And I would like to take these requests, mold them into solid form, like a small statuette and set them upon the mantel because they are priceless) So I am going to answer...You keep knocking. And if the door doesn't open, you try again. You don't give up. You make your voice and your physical presence known and available. You listen. You hear. You do not embarrass or make fun of. You do not put the spotlight on. You allow the aspie to be themselves with subtle guidance through the murky waters. You understand or are willing to try and understand that the world is a very scary, overwhelming place and that even simple, mundane tasks require great effort and thought. You realize that your own speech (that which you say when talking to an aspie), is frequently, like trying to decipher a foreign language. You talk slower and listen harder. You are aware that the aspie speaks in a language all their own and try and learn it. You can somewhat grasp the reality that an aspie needs lots of downtime and opportunities to process information. Please don't always expect an immediate answer. You get the idea that emotions and stress can sometimes have a more noticeable, dramatic effect on the aspie. And that Tics Happen, no big deal, just part of being Aspie. Be patient. Be kind. Its really that simple.

Friday, March 18, 2011

Acknowledging Fear...The Great Pretender Speaks

Speaking of truth...its chilly out, around 37 degrees. The snow speaks more truth than the sunshine.

Its quite odd to write about what I am afraid of. I have played the part of Great Pretender for ages now. People like it when you pretend to be normal...they pray that you are normal and they reward you for playing the part when it is done well.
Lies, All Lies
Lying...hmm, that seemed to be what thrilled others the most. My parents loved it when I pretended to be normal, when I kept the majority of who I am under cloaks and daggers, under rugs and behind the furniture.
There are rewards and bribes for denying your true self and for putting on a good show.
Pretending to like going places and being at family functions. Playing that the noise doesn't bother you or the sights, smells and foul stench that is in the air. Making nice and sitting still and not moving or wavering from the task at hand. Pretending to pay attention to the most boring, sometimes upsetting and unpleasant teachers and peoples.
Hanging out with unsavorys, the juvey d's and pretending to be like them just to have a crowd, a posse, a like me please I am one of you kindof deals.
Pretending that you have no strong sense of self or of what you want or what you feel because that is so very harsh against the grain and unheard of. No rumblings, no veering from normal planes,lest you fall off the bandwagon, from great heights and become crushed upon the ground.
Pretending is like putting on layer upon layer of sticky, musty, old clothes and wearing them so long that they become affixed to your skin and the very effort in removing them leaves ones skin raw and oozing. It has been going on for far too long says the cat to the mouse.
Under all the layers, somewhere,way down deep, is me...and that which I am without expectations, parents failed hopes and shattered dreams.
To see or not to see...the aspie underneath.
Mostly I had to pretend to Not be afraid. I'd just shove that fear farther and deeper inside. As long as i didn't say anything, as long as my expression remained blank and impassive, no one would know, no one would question, no one would reprimand and punish...for good behavior, in surface value alone was what they wanted. It did not matter who I was or how I felt.
Fear was nothing more than a dark, dirty, shameful thing that got you in trouble and beaten with big sticks.
So, thus, I pretended to be calm....I pretended to be interested...I pretended to listen...I pretended to be fearless...and in the process promptly lost my sense and any sense of who I really was.
Now, now, no one rules me. No one punishes me. No one asks and expects me to do anything when it makes me uncomfortable and scared, unless, of course, I agree. And there have actually been many times where i have had to face being scared, but it simply needed doing. My role as a parent is one of....immense challenges at times, but sometimes there are things that I am compelled to do for the love and sake of another.
Acknowledging fear doesn't make me less of a person....I am not prey or fodder for villains. Rather getting in touch with that which makes me tick and quiver and tic some more, means that I am removing the heaps, piles and layers put upon me by others or imposed upon me by myself.
I become more real with my awareness. I flow into more of that which is really, truly me.
I have grown so tired of the constant pretend. The play has grown stale, old and outdated.
I remove the fancy red cocktail gloves, you know, the ones with the sequins and bells that go clear up past my elbows...I carefully peel, remove and discard, in favor of them leather ones.
Getting real

Beauty in Death

Thursday, March 17, 2011

Perseveration..Transitions..pulled from the net..Illness, Colds

I stumbled upon the word "perseveration" today...I had never heard it before.

Definitions: the tendency for a memory or idea to persist or recur without any apparent stimulus for it
perseverance: the act of persisting or persevering; continuing or repeating behavior; "his perseveration continued to the point where it was no longer appropriate"

perseverate - describing the behavior, generally displayed by those with various developmental disabilities, of extraordinary, exclusive and lasting obsession to a detail or occurrence others consider minor; to repeat or continue a pattern

A term used to describe an autistic person's fixation on something. For example, an autistic Godzilla fan might spend hours on the internet looking at pictures of Godzilla, write Godzilla fan fiction, and launch into a monologue about Godzilla movies at any opportunity.

Perseveration and difficulties with change
Posted by capriwim on September 5, 2010

It’s been a while since I wrote a blog post. It’s not that I don’t have anything to say – I’ve thought of all kinds of topics to write about, and planned them in my mind, but somehow the actual act of getting myself to sit down and writing them seemed hard. Not that I find it hard to actually write blog posts – I like to write them – but what is hard is the actual switch from whatever I’m doing to something different.

As this is a common aspect of Aspergers, I decided I might as well write a post about it – as a way of both explaining my absence and illustrating why people on the autistic spectrum have difficulties with organisation, and why the ‘perseveration’ thing happens.

I’d never actually heard the term ‘perseveration’ until I started reading about autism and Asperger Syndrome, and then I immediately knew what was being described. I can illustrate in by talking about the past couple of weeks.

Once I started doing the ’100 things’ strategy described in my last post, I became focused on organisation. I started planning my meals for the week too, which got me thinking about health, and starting to plan exercise. I started keeping a journal to keep track of all I do each day, dividing my life into various categories, such as ‘house’, ‘food’, ‘exercise’, ‘finance’, ‘relaxation’, etc. This became the focus of my life for a few days – I had to be constantly aware of it for it to work, and in order to be constantly aware of it, I had to focus my mind on it to the exclusion of all else.

Then I started going for walks in the woodlands and in the moors. This seemed a logical way of combining the categories of enjoyment, relaxation and exercise, because I really enjoy such walks. Once I started, I would walk for hours and hours, so walking became the focus of my days. I started taking photographs of the trees, because I love trees – their shapes fascinate me. My days became totally focused on woodland walks and capturing them in photographs, and then collecting these photos onto my laptop, cropping them and resizing them. I completely forgot about all other aspects of organisation, and the journal I was keeping. I just remembered it yesterday, and realised I hadn’t written in it for six days.

When I stand back from this, I feel frustrated, because although I love walking in the woodlands and the moors, I don’t want my whole life to consist of that. I also love reading novels, and had actually planned to do some reading. I always took a book along on my walks, thinking I would sit down at some point and read it. But somehow my mind just wouldn’t switch from walking mode to reading mode. I was walking and I would keep on walking. I would sit down sometimes on the walks, to have something to eat, but I wouldn’t read, because reading seemed like a completely different world. The switch from focusing on the walk and the trees to focusing on a book seemed like a vast chasm.
[I understand this completely. When I go for a walk it is hard to stop walking even if to sit on a bench or to take a picture with my camera.]

This isn’t to say that I can’t read when on a walk – but to do that, my whole focus would have to be on reading. I’d be oblivious to the beauty of the woodlands and countryside around me. When I was a kid, my focus was often entirely on reading. Wherever I went, I would bring a book and I would read it – read it while walking along, reading when stopping anywhere, etc. – because reading was what occupied my mind.

I’m trying to think of an analogy so people can understand the difficulty switching from one thing to another. It’s kind of like moving to another country on the spur of the moment. For most people who have lived in the same country all their lives, this would be an enormous and difficult transition – because your mind is accustomed to your own country. You have learnt to take many things for granted which would all change if you moved to another country – it would be a huge transition, and would be very difficult to just switch from your life here to moving there. Not just in practical terms, but in mental adjustment.

Interestingly, I moved to Canada for five years when I was 21, and many people said how brave I was, but to me there was nothing unusual about it, because all changes are huge for me. Moving to Canada was no different. Obviously, in practical terms, the actual act of switching from walking to reading is nothing like the act of moving to Canada. There were all kinds of complicated things involved in moving to Canada, like applying to be a student at the university, getting a student visa, organising accommodation, booking a flight, etc. – whereas switching from walking to reading just involves sitting down and taking a book out of my bag, opening it and reading it. But the difficulty is not in the practicalities of the act itself – it’s in the switching of mindset.

This is why people on the autism spectrum often develop special interests. Once we are focused on one thing, it is so much easier to keep focusing on it than to switch to something else. Something else may arise from it, as a side thing, like woodland walks arising from my focus on organisation, but it arises because of a link. It’s much easier to switch naturally to something that is somehow linked than to switch to something which is unrelated. For instance, when on my walks, I started thinking about how I’d like to read some reference books about trees and flowers and insects and birds. If I were to do that, then I would probably start focusing on reading, and then may well start reading novels again. But if I were to just pick up a novel and read it today, I may enjoy it but it would feel disjointed from the rest of my life, unless there was a central theme of my life to which the book related.

This is why life can feel fragmented for people on the autistic spectrum. We often lack a sense of overall cohesion – ‘central coherence’ – so we find one thing to focus on, and somehow everything else needs to relate to this.

Understanding this can help with devising strategies. For children on the autistic spectrum, who have various activities organised by adults, it would be helpful to find some way of linking the activities, so there is not the uncomfortable jolt of switching from one to the other. For instance, as a kid, I would never want to go to bed when it was bedtime. This was because my mind was focused on whatever I was doing, and couldn’t make the switch to going to bed, which was, to use my analogy, like moving to another country. What would happen is that my mother would get angry, which didn’t help, because it became a fight, which made me even less inclined to relax and quieten for bed.

It occurs to me in retrospect that if instead there had been some kind of link, and routine, it would have been easier. It’s hard to know exactly what would have worked, but it occurs to me that maybe if lights had been dimmed, and soft relaxing music been played, or maybe a scented candle burnt (out of reach, for safety) at a certain time, then this might have somehow prepared my mind to quieten down, and I would have started to associate these sensory cues with going to bed.

I probably could do something like that for myself as an adult too (as I still have a lot of difficulty going to bed at a regular time) – although then I’d be responsible for the cues myself, so I’d have to somehow find a way of making myself do them at the right time. I’m still trying to work this out in my mind, so I have no definite strategies, but I will experiment with trying to find something that works. Maybe having an alarm clock go off at a certain time in the evening when I want to start preparing my mind for bed time – and putting the alarm clock by my aromatherapy oil burner, as a cue for lighting it, and that could act as a cue for dimming lights. I will try this and if it works, I’ll write another post about it.

So that is something I pilfered from the here is my take...

Going to bed has always been a challenging transition. For the most part, I end up falling asleep in my clothes for a couple of hours, waking up and changing to jammies and crawling back into bed. Falling asleep, in and of itself, is not easy usually due to the increased thinking processes that become sharper and more incessant as the house becomes quite. I find that if the tv is on, it is much easier to fall asleep than if it is silent. If the tv is off, it is so very quiet that my brain works on overtime and my thoughts are clearer and louder. The low volume on the tv helps me to subtly focus on that other than any internal worries or concerns.

Frequently, when I forget to eat enough during the day because I am focused on one thing or another, I will wake up at night absolutely starving and raid the kitchen. Thats one reason that it is nice to have a routine. I know whats for breakfast and when (Breakfast IS my favorite meal and it consists of nothing else but a piece of toast with warmed peanut butter. If, for some odd reason, there is no bread or pb in the house, I have nothing. I have yet to find anything to substitute for my fav)...lunch is often a gamble, hit and miss, sometimes left overs. Dinner, probably my least exciting meal for some reason even though I am the house chef and I cook it. I tolerate it, but thats about it. Food is definitely less exciting at dinnertime for some odd reason...always has been. Even if it is something that actually tastes good. Typically, I will have a half-portion of whatever it is as my appetite is lowest at that time...I would rather skip dinner and just do a couple small snacks.
Food doesn't excite me but I do have a penchant for snickers and certain cookies...yeah, those taste great to me and i often have a hard time stopping after just one or two....hence, I do not appear to be starving anytime in the near future :)

Other times that I have noticed this took me a very long time to be able to stop driving, pull off the road and look at a map, pick a new wildflower from the roadside to take home and study or take a picture of something that interested me. For years I wanted to be able to do that but it has only been in the past five years or so that I have actually been able to stop the car and do something that very much interested me. To be driving, one does not stop until the destination is reached. I could never figure out why stopping, even for a moment or two, was so darn difficult.

In a slightly different vein, today I have had this uncomfortable upper respiratory cold going on, which makes me incredibly crabby. When I take ibuprofen my sense of hearing becomes acute and everything becomes way too loud...where was i going...okay. Anyway, for the past two days I had been focused on a particular...situation..and I kept obsessively repeating 5 very specific sentences over and over and over, probably at least 2 dozen times every hour without fail. Well,then someone said something to me and it negated the sentences and then I was lost again...I couldn't find an anchor...okay, thats when I really became irritable and somewhat agitated. I hate floundering..and have yet to find the next item to grasp onto.

Repetition/ Perseveration is like a start with one piece of candy, in the middle and you start walking around and continue placing more pieces of candy in a circle, one at a time, walking in a circle around. The walking part never stops. Then you start layering with paper maiche and newspaper, one layer at a time and there is no stopping point there either, it just goes on and on. Its almost like a pseudo foundation of sorts..the grounding of being overly focused and the more you do it, the harder it is to stop. And then, then someone or something comes along and the project, the pinata gets busted. Now what? You stare at all the candy scattered from here until tuesday. The foundation upon which you walked melts and disappears and can never be gotten back, so you flounder, flip and flop, rampant thoughts race by in an effort to fill the void...somehow...searching for something to grab and start building again.

Its only fair to say that minor ailments like colds and other bugs do tend to create more chaos within this aspie. I don't know if neuro-typicals feel such far-reaching effects but I certainly do.
And it seems that each and every of these minor ailments has a particular emotional or mental effect. Some colds are downright numbing, others really slow down the whole cohesive mental process factor. Mostly I find them to be varying degrees of irritation: mean, angry, crabby, cranky, self-pitying, frustrating, weeping, short-tempered...something along those lines. I can recall a couple that were funny/ stupid and even one that was down rigth silly. I do often name them as such...this one is definitely a crank crab, whereas the last cold was simply weeping/ self-pity. When it is harder to complete a thought or if my speech process get slowed down and I am having a hard time forming the correct words, that does tend to lead to irritation and frustration. And the taking of the motrin and the sudden loudness of everything, well, it stands to reason that I am irritated.
Anyway, back to the bottom end of the ocean to flounder some more

Monday, March 14, 2011

Acheiria...My little Lefty...Momma Screws Up

Well, momma isn't scoring too high these days. My little Sebbie..yes, it was only a month or two ago that we surmised that he was born naturally left know, the hand he was born without. And for the past...oh, seven years, he has routinely eaten everything from rice to corn to meatloaf, etc...with his right hand. We never forced him to use utensils. Sure, he would frequently use a spoon for applesauce and some fruit but at the dinner table we simply accepted that the standard way for Seb to eat was picking up the food with his right hand, rubbing it on the palm (see photo) of his left arm and putting it in his mouth.
Last night it was chop suey so instead of watching him eat rice single handedly and jokingly calling him a "chinaman". I insisted on his using the fork.
OMG....he picked it up like the most foreign of objects and had no clue as to how to maneuver it to pick up food. He had fork in hand and palm had to work with hand to guide the fork in a very erratic, haphazard fashion to attempt to scoop up some rice. He expressed his dismay and really did not want to use it at all but I showed him by example a few times and continued to encourage him to use it citing the old adage that it will become easier with practice.
I felt pretty much like Queen of the Dopes and worst mom of the year for allowing him to not use his fork for all these years. Had i insisted upon it earlier, we could have more quickly addressed the problem.
Part of me thinks that this is very be born brain-wired to use a left hand and then to have said hand be non-existent. Actually, I think it really blows and sucks and is extremely unfair...but life has never been about fairness...rather it is about the ability to face every challenge and circumstance with as much dignity and strength as a person can muster.
Damn, yeah, lets give the one-handed kid an Extra challenge...this does not seem right
So, my action plan which is already in motion, is to notify his occupational therapist (done) so she knows what she is up against, notify his teacher (done) so that she can better understand his lack of legible writing skills, make an appt with his prostetisist to refit his prosthetic helper left so that he can actually wear it without it cutting into his elbow and see if said prost. guy can fit Sebbies helper with some sort of adaptation that may, may allow him to scribble with his left. I have an appt scheduled for friday so we can work on the fit...from then, we will see how quickly he gets used to his "helper hand" and go from there.
It would have been nice to have caught this must be awfully frustrating for the little guy...I am so very sorry that I missed this..I mean, who would have thought???? Really???

Saturday, March 12, 2011

The Table Set

the table
was always set
for the guests
who never showed
the lacy white frill
ironed to perfection
crease free
and slightly starched
the little girl
set the silver so
making intimate eye contact
with every fork
and especially the spoon
distorting her image
her smile broader
than real life
ever could possibly be
she spun
spoon in hand
mimicking face
she spun and twirled
as the flowers
were laid to rest
upon the center
of the oblong
warped table
set with pristine
pretend, make believe white
her dress making
higher and higher circles
around her
and her alone
she hummed
as only she knew how
and spun
she disappeared
from all view

everyone finally arrived
sat at the table white
ate from the flowered plates
and never knew that she
was gone

The Red Balloon

The little girl
on the hilltop
holding the hand
of a man
and the
red balloon
the dog barked
the little girl screamed
the balloon
burst free
she wept
and crumpled
to the ground

Sunday, March 6, 2011

Lichen Sclerosus...enough already...Lets Talk

DISCLAIMER: Once again, I deal with one of those issues that no one wants to talk about and sweep under the rug and is too embarrassed to acknowledge. Yes, this is sensitive adult deal or leave...whatever.

About a year and a half ago, or so, I developed a number of troublesome symptoms and was simply too embarrassed to see my doctor or to talk about it with Anyone. Looking back, maybe a quicker diagnosis would have made my current life easier...who knows?
It also did not help that when I finally went to my provider I was misdiagnosed not by just one doc, but by 3 or 4 depending on how you count.
Granted lichen sclerosus is rare and uncommon, so I really can't fault them.
And it was me who hesitated going to a dermatologist. I am grateful that a friend of mine explained to me that yes, indeed, a dermatologist does deal with genital ailments.
Sure enough, I was diagnosed with lichen sclerosus, or, as I like to call it "leprosy of the genitals" or "I have lost my genitals in an unfortunate smelting accident" (Its an Austin Powers Goldmember thingy that is stuck in my head but is quite accurate)
Basically, there is no known cause, maybe autoimmune, maybe 100% treatment that cures it. Ointments and steroids can manage it, at times.
Its frustrating. Some things do make it worse, stress, coffee, chocolate that I am sure of in my case.
Few things help and address the core issue of WTF is wrong. Acupuncture seems to help and i have read about flax seed oil and red clover tea, both of which I take on a daily basis.
OOWWW, it involves the genitals...lets not talk about that.
I have two friends that I have been able to converse with about this. Yet, I find myself ashamed for Really, no reason. I have this disease, this disorder and yet am not free to talk about my concerns, fears and frustrations. That is pure bullshit. I know I have nothing to be ashamed of. I did not ask for this. And I will not pretend that it does not exist because people clasp hands over ears and walk away. Enough already.
Because I have...challenged genitalia does not make me less of a person and more of a freak.
And yes, I am pissed, angry, it what you will. First off, I waited waaayyyy tooolong to go to my doc for fear...fear of the unknown, fear that it was all my fault, fear that I deserved this...shit.
I fault not my docs as this is a rare, uncommon disease and I am the worlds poorest historian, at times, and have great difficulty relaying symptoms, how such and such feels, how long I have had this symptom or that one...I even went so far as to have a colonoscopy to try and diagnose this and That didn't even work. And then the idea of going to someone else...someone whom I had only seen a couple of times before...well, it was a challenge. I am forever, ever, ever grateful for my friend Amy, as she has enriched and helped my life in more ways than I can ever, ever explain. She helped me realize what exactly I needed. Thanks Amy
Whew...this shit has been festering for awhile now....enough already..
The following if some of the scant info that I have gleaned off the internet regarding lichen sclerosus. Its a very odd, extremely strange, bizarre disease...disfiguring and emotionally frustrating....this is how I roll..this is how I deal...

What Is Lichen Sclerosus?
Fast Facts: An Easy-to-Read Series of Publications for the Public
What Is Lichen Sclerosus?
Lichen sclerosus is a long-term problem of the skin. It mostly affects the genital and anal areas. Sometimes, lichen sclerosus appears on the upper body, breasts, and upper arms.

Who Gets Lichen Sclerosus?
Lichen sclerosus appears in:

Women (often after menopause)
Men (uncommon)
Children (rare).
What Are the Symptoms?
Early in the disease, small white spots appear on the skin. The spots are usually shiny and smooth. Later, the spots grow into bigger patches. The skin on the patches becomes thin and crinkled. Then the skin tears easily, and bright red or purple bruises are common. Sometimes, the skin becomes scarred. If the disease is a mild case, there may be no symptoms.

Other symptoms are:

Itching (very common)
Discomfort or pain
What Causes Lichen Sclerosus?
Doctors don't know the exact cause of lichen sclerosus. Some doctors think a too active immune system and hormone problems may play a role. It is also thought that people inherit the likelihood of getting the disease. Sometimes, lichen sclerosus appears on skin that has been damaged or scarred from some other previous injury.

Lichen sclerosus is not contagious (it can't be caught from another person).

How Is It Diagnosed?
Doctors can look at severe lichen sclerosus and know what it is. But usually, a doctor takes a small piece of the skin patch (biopsy) and looks at it under a microscope. This allows doctors to make sure that it is not a different disease.

How Is It Treated?
If you have patches on the arms or upper body, they usually don't need treatment. The patches go away over time.

Lichen sclerosus of the genital skin should be treated. Even if it isn't painful or itchy, the patches can scar. This can cause problems with urination or sex. There is also a very small chance that skin cancer may develop in the patches.

Surgery is normally a good option for men. Circumcision (removing the foreskin on the penis) is the most widely used therapy for men with lichen sclerosus. The disease usually does not come back. Surgery is normally not a good option for women. When the lichen sclerosus patches are removed from the genitals of women and girls, they usually come back.

Treatment also includes using very strong cortisone cream or ointment on the skin. You put these creams on the patches every day for several weeks. This stops the itching. Then you use the cream or ointment two times a week for a long time to keep the disease from coming back. Treatment does not fix the scarring that may have already occurred.

You need regular followup by a doctor because using these creams and ointments for a long time can cause:

Thinning and redness of the skin
Stretch marks where the cream is applied
Genital yeast infections.
Sometimes, you don't get better when using the cortisone creams. Some things that can keep symptoms from clearing up are:

Low estrogen levels
Allergy to the medication.
When creams and ointments don't work, your doctor may suggest:

Retinoids, or vitamin A-like drugs
Tacrolimus ointment
Ultraviolet light treatments (not used on skin of the genitals).
If you need medicine, ask your doctor:

How does the medicine work?
What are its side effects?
Why is it the best treatment for my lichen sclerosus?
If a young girl gets lichen sclerosus, she may not require lifelong treatment. Lichen sclerosus sometimes goes away at puberty. Scarring and changes in skin color may remain.

Can People With Lichen Sclerosus Have Sex?
Women with severe lichen sclerosus in the genitals may not be able to have sex. The disease can cause scars that narrow the vagina. Also, sex can hurt and cause the patches to bleed. However, treatment with creams or ointments can help. Women with severe scarring in the vagina may need surgery, but only after lichen sclerosus is controlled with medication.

Is Lichen Sclerosus Related to Cancer?
Lichen sclerosus does not cause skin cancer. However, skin that is scarred by lichen sclerosus is more likely to develop skin cancer. If you have the disease, see the doctor every 6 to 12 months. The doctor can look at and treat any changes in the skin.

What Kind of Doctor Treats Lichen Sclerosus?
Lichen sclerosus is treated by:

Dermatologists (doctors who treat the skin)
Gynecologists (doctors who treat the female reproductive system)
Urologists (doctors who treat the urinary or urogenital tract)
Primary health care providers.
Lichen Sclerosus is a chronic, non contagious inflammatory dermatosis (skin disease). It may also be called lichen sclerosus et atrophicus, or its name is often shortened to LS.

Very little is known about this skin disease. Once thought to be rare, lichen sclerosus is now thought to be uncommon. The two most accepted theories are that lichen sclerosus is an auto immune disease or that it is a hereditary condition. It could even possibly be both since auto immune diseases do run in families. Many patients with LS also have other auto immune diseases (Lupus, MS, Celiac disease, etc).

LS usually affects the genitals and anus, but like eczema and other skin diseases, it can occur any where on the body as well.

LS is a chronic disease. This means that it is ongoing. There is no cure for LS. However, since any scarring or fusing caused by LS is permanent, it is very important to manage your LS symptoms with topical creams.The intensity of symptoms associated with LS varies because individual cases may be mild or severe, or somewhere in between.

Common Lichen Sclerosus Symptoms:

Intense Itching

Discomfort and Tenderness

White Spots, Often Shiney


Painful Intercourse

Ulcerated Lesions

How LS is diagnosed
When talking about lichen sclerosus, it is important to first discuss which doctors are most qualified to diagnose and treat the disease. Most family physicians will not be familiar with LS. Since it is a skin disease, dermatologists can diagnose and treat LS. If you are female and have LS on your vulva or anus, you may be more comfortable going to your gynecologist. Whether you're male or female, if LS is affecting your urethra you may even find good care under a urologist. Which ever type of doctor you decide to see, be sure they are very familiar with LS and its variety of treatment options. If your doctor does not seem to be very informed about this rare disease, then find another doctor.

Some doctors diagnose LS with just a visual examination. If the patient complains of pain and intense itching and the doctor observes the telltale shiny white spots, then he may be very comfortable with diagnosing LS on the spot. Many doctors will recommend a biopsy to be sure. The biopsy is called a punch biopsy. A punch biopsy is performed (after the skin has been numbed) with an instrument that punches out small plugs of skin (the size of a matchstick head).

Saturday, March 5, 2011

Agoraphobia versus Topographic Agnosia

Logically, now that I have acquired this new info regarding Place-Blindness, I would have to disagree with me calling myself agoraphobic per se, as I am not afraid to leave my house, rather, I am afraid that I will not be able to find it if I venture out. For that has been the real fear...will I be able to find my way back home? And that is the way that it has always, always long as I can remember.
My family, partner and kids, have travelled to Oregon, South Dakota, Cape Cod, Outer Banks, North Carolina, North Dakota, Kentucky, Tennessee, New York and Wisconsin. I always knew travelling was disconcerting and challenging, fraught with lots and lots of anxiety, but as long as partner was in the seat beside me or walking next to me, I managed. My foremost strategy has always been to keep her in sight, preferably right next to me. Now I understand why travelling has been a battle for me.

I cannot begin to explain the depth of extreme elation that I experience when I have been either far from home or away for awhile and then I turn into my own driveway.
How have I done this for so long? How have I lived with this condition...anxiety knows my name. I have fraught with this. I have found various coping skills and mechanisms, and mostly, I just do it, over and over and over again. I fight through it. Its just another item in the very large backpack I carry around everywhere with me, under my coat so hopefully no one can see.
This would be so damn funny if it wasn't so fucking true. Part of me Is in disbelief...and looking back..omg, there is a reason I lean towards put it mildly. Shit..I don't think anyone deserves this much baggage, really. And part of me is relieved...because it all makes perfect sense, now...perfect fucking sense.