Hospital Tests Feb 15 2013

So Friday went to the hospital for tests

Which tests? I don’t really know, it’s not like they tell me or give me a list or a clue or really translate anything for me but the gist of it is… test to figure out what is wrong with my health, which autoimmune it is or if it is something else

 

Test was crap

 

Nothing found on the xrays (hands and back)

No solid clue on the blood tests

See Dr again in a month …maybe I get to see the specialist this time instead of some young underling and his minion

They gave me pain killers that are one level down from morphine and it has LOTS of side effects that effect people but ya know… rarely… so I shouldn’t worry

 

What happens….

 

I FUCKING GET SIDE EFFECTS

 

And the pissy thing is!!!

Ok…

 

I was on the hospital bed, talking to the 30yr old doc, hubby is translating as I get more and more hysterical

Crying madly

I don’t want the meds, I know they will cause me trouble

He leaves after a while

 

I keep crying

Takes a while

I calm down

Clean up

Put make up on

You know… my game face

 

I go out, get the prescription, fill it and take the meds like a good lil guinea pig

 

I get sick

The pain doesn’t go away

My eyes swell up

Lymph nodes react

Oh yay what fun

 

I am so fucking tempted to send that young doc a bunch of flowers and a note saying you win the sadistic fuck award

 

Honestly, I know there are others out there that are in worse shape than I am… this really gives me no comfort…

The reality of it is… we… as a whole… are at a stage in life that there is no reason why we should not be educating people more, helping the world to eat better, grow as a group and as an individual… there is no reason we should have this level of suffering going on for decades

We are not yet at a utopian level for education, medical care, personal growth and what not… but we could be if we gave a rat’s ass and tried instead of pointing fingers or thumbing our ass in stupidity

 

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Feb 15 2013 another Hospital visit (EDITED)

Woke up early and got started well, made good time to the hospital and sounded like a dork when trying to tell the guard at the gate where I needed to be

Being early is wonderful, I parked my car with easy… helps when there are no others parked yet

Figuring out the elevator was odd, seems you push the floor you want on the OUTSIDE and wait, good thing someone stopped a floor below where I needed to go and I took the stairs up one level (later learn that there are multiple elevators in one area and I used the “wrong” ones)

I find a nice lady and she shows me to my room, it is #13 on a Friday, I love it. I had been sad that today was not Friday the 13th but a room by this number is good enough. For most people Friday the 13th is bad luck but not for me

Maybe…

At first it is normal stuff, BP, blood samples, they always want urine so I did that long before they could ask… Americans are good at being preemptive 😉

So far it had only been the woman helping me but then the intern/med lady told me that the doctor would see me soon and by the use of language the doctor was male

An interesting note: I need to stop assuming that all male doctors will be older than me by many years… *blush*

Not only do I get a good looking doctor, who can’t be much older than me but he has a satellite orbiting him who is also good looking

Too funny, I have to do a little dance, move this way and that. Show how well I bend, lower my pants a little and show how well I can bend backwards… people are always surprised that I can be in as much pain as I am with my back, yet be very flexible… more so since I am not stick skinny

They wonder off, hubby gets here, doctors wonder back in and everyone gets to talking, translating and god my head hurts… too hot in the room, too dry, ready to pass out or throw up 😦

Alone now, thinking of many things… like my back, my hands, the various xrays that they will take, how bad my body hurts right now and how I “look” normal

Also thinking of last night

Kids have been itching and have a rash, me too

Took them to see the general doctor and for the first time in two weeks I look like crap and guess what happens…

The normal doctor (older, funny and attractive) is out and the younger one is there… and I swear he is flirting with me

Every time he shakes my hand… there is this… I don’t know how to explain it but it’s “HOW” he touches my hand and how long he holds it

I know guys… I read something and every time I have seen him, I have been with the hubby (and look like crap) and ignore what he does… kind of

Each time it has been needed to touch my hands and arms due to my health and… well… it’s the same thing… “HOW” he touches

It could be that he is just a gentle soul or tender due to how often I end up in tears when we see him (again, due to my health), or I could be imagining things… but…

I made sure I got his name and number… for my medical records of course

I haven’t tested it but, the number he gave me was not the same as on the paper for my prescription. I will call and thank him later, he really has been very kind and the look of genuine concern on his face, each and every time I have visited… its kind, its sweet and I like it… helps to counter some of the crap I have associated with doctors

I would love it to be that he is flirting with me and not like this with everyone but I don’t really care either way. I just enjoy the attention

(EDITED)

Anyway back to the reality of being in the hospital

It’s boring

I hurt and feel ill and am being social me 🙂

Put some peppermint oil on my head and it helps a little

 

 

 

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10 days & Panic Attacks Feb 5 2013

10 days to go…

I posted this as my facebook status, I need people to understand and cut me some slack if I am a bit more than they can cope with over the next few days

warning:
today is the 5th
in 10 days I will go to the hospital for test to hopefully find out which of the possible 90 autoimmune disorders I have or if it is something else…
from now until then I am likely to have panic attacks at any point because I have ptsd when it comes to my health… everything rests on getting answers and I am terrified I will have to wait more… I have waited 21 years already
please be understanding if I am a lil insane the next few days

I have been ill since I was 12, it started with a seizure and a bunch of symptoms, got worse and worse to the point I had to be taken out of school because the environment was slowly killing me

Doctors would say one thing but never help you understand what you needed to do, then they would say another and 20 yrs later all the doctors want to do is say it’s all in your head, change your diet, exercise more, what happened in your emotional history to fuck you up this way, do you take drugs, alcoholic …. I have had doctors tell me I can’t know my own body…I fucking live in my body…wth?!

Last September I spent days in the hospital for a migraine that wouldn’t go away, I forced them to do tests and then forced them more for the ANA test and that one came back positive… nothing else they wanted to do showed I had health issues

But that test… ANA http://www.sclerodermatt.org/articles/better-health/315-explaining-the-ana-blood-test-normal-range

See that test is special… if you test positive that basically tells doctors to shut the fuck up! It gives validation that you are sick with ….SOMEthing…

When your score is 1:640 and normal tends to be around 1:40 …. SLIGHT difference

That means the test had to be cut 5 times before they stopped and said yes she is sick

20 years to hear, yes you are sick

But what am I sick with

One or more of any of the 90 autoimmune disorders on the market

Will they know this time?

Will I get answers?

What tests will they do?

I mean I know normal blood work, but anything extra?

Are there blood tests I should be asking for?!!!

I know they want to do an xray…of what?

She said maybe a biopsy of my salivary gland but will she?

Will they scan my throat for that one type of thyroid disorder?

Will they test for TB? Because you know tb can be in the body without being in the lungs and one guy tried to prove a connection in evolution that rheumatoid arthritis was the bodies invention to counter tb… you never know

Point is

What are they going to do?

And will it just end up being a waste of more time

Everything rests on answers

I have been fighting this for so long, I am tired of fighting and panicking and not living

The next 10 days are going to be hell

 

I need to sleep, I am scared of the silence in the darkness… it makes my panic induced fears that much harder to ignore

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Hospital April 2 2013

Went to the hospital on Friday afternoon due to severe pain in my head

The pain has been there for over a month, maybe a level 5 on their pain scale

Normally I can cope with a level 5 but when you are at that level of pain for over a month, nonstop and you have other things in your life that press in on you…

It becomes harder to cope

With the changes in weather and all the pain, even sleeping did not take the pain away

I got ahold of the hubby and he took me to the ER, I knew the pain was going to get worse and it did

Because we already have been working with the neurologist and the specialist from internal medicine, I was able to get “seen” earlier than others in the ER

It still takes ages

They left me alone, on a bed, in a small room off the main waiting area

The pain got worse

They tell you that the pain is only allowed on a scale of 1 to 10 but at points the pain went higher than a simple 10

When you live with chronic pain, it becomes easier to deal with than a person who lives a “normal” life

My average pain level is a 3 and I don’t know what it is like to live without pain anymore

Anyway… in that room, the pain got worse

At points I couldn’t lay still and try to relax or sleep

My body would curl up in the fetal position or elongate and my legs would push against objects

I couldn’t control the sounds I made and I lost the ability to speak French

At one point I tried to get one of the guys that had been checking up on me, to understand the idea of hot and cold, using his hand on a cold object but he didn’t get it

My brain was on fire

I could barely walk

The guy just didn’t understand and I wasn’t sure if he would come back with someone who spoke English

I had already left the bed at one point, going on my knees at the window and pressing my hands, wrists and forehead to the cold glass to help me cool down but I needed more

I grabbed my cane and forced myself to walk the distance to the front desk

I was in the middle of a flare up and could barely control my body

The women at the emergency desk watched in horror as I came closer… I don’t blame them, I must have been a mess

Leaning heavily on the counter, my eyes closed, I used the last of my abilities and spoke French to tell them I was losing my ability to speak French and that my brain was on fire

That I needed help

After that I lurched back to my “room” and knelt down at the window again, trying to find the cold spots

Someone came with an ice pack and that helped but in that moment… my pain was so high that a 10 would still have been too low to describe

I am sure that had I not been able to cool down soon, I would have had a seizure like when I was a little kid after taking the immunization shots

Having a room readied for me in neurology, they took me there and tried to find a vein for my IV line

Sadly my veins are thin and it was hard to get one to behave for the nurse

First my hand

Then two more tries in the forearm

That last one seemed to have worked a bit but not enough

They fed me drugs which helped me sleep and it was that which lowered the pain

Sunday I couldn’t stand being in the hospital

The IV line had been causing me pain and minor swelling in the arm and hand

I couldn’t fully close my hand due to the inflammation but everyone said not to worry

Sunday was the first time I was lucid, I was also panicking and bitching because I could barely speak French anymore and no one was taking me seriously

I went home on the condition that I would come back Monday night for tests and a Dr visit Tuesday morning

Sadly nothing could be done over the weekend and since it was Easter weekend, nothing could happen till Tuesday

So now it is Tuesday and I still have a level 5 pain in my head

I have seen the doctor and his orbiting satellites (younger doctors in training who seem to hover around like they are lost in space), seems he had the bright idea to train his minions on me and my roommate

He should have read the case files, my chart, even if he didn’t have his underlings read it

The doctor is young, aggressive, talks too fast and triggered a panic attack

I called hubby to help and finally the doctor understood more of the details that I couldn’t answer

His one minion kept pissing me off, she just could not hold still, always fidgeting or touching her hair or swinging her body or some other thing

That kind of behavior doesn’t instill confidence in the patient and depending on the level of pain, it actually makes things worse … too much activity causes more pain

Hopefully I will have answers soon and lunch …

It’s so weird seeing all these young people walking the halls in lab coats

Like teens playing some part in a high school play

It’s hard to take them seriously when they wear jeans and skater shoes or jelled up hair

I know I shouldn’t judge them but they have a youthful arrogance that proves me right

 

 

 

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The Neurologist March 28 2013

Note: the visit with the neurologist, who shall not be named… mainly because I can’t pronounce it *grin* … was on the 25th and this has been written later when I had calmed down… visits always crank me up

 

So it seems I will need to teach this new doctor to speak my language

As with all cultures around the world, there is a the spoken language and then there are “other” languages

I do admit to having a problem with our ability to speak the same language…country to country… English to French

That is not the one that overly concerns me though

He mentioned a book by Sàndor Ferenczi called “le traumatism” or something like that, the neurologist figured it might… help me… in some way

The problem with this being that he is under the false impression that my PTSD, stress, anxiety, panic attacks are all related to the sex form or rape and it is this which is making ill for the last 21 years…

What I read about the author, via Wikipedia, was fascinating and although I could not find the book the neurologist recommended (in English and on kindle), instead I bought another book by the same author

This book is about dreams and should prove far more interesting due to the quality of dreams I have

 

Reading about the author’s style of therapy, how it differed from Freud, how they had been colleagues and the thing I enjoyed the most about the short wiki article…

The fact that…with my lack of schooling (pulled out of school the 1st of May my freshman year in high school), lack of training or significant resources… I was able, on my own, to learn similar styles or methods on how to think and help others

I am not saying I know all of Sàndor Ferenczi’s techniques, that I am his equal or that I am the equal of my neurologist…

What I am saying is that I taught myself a new language, what seemed like I was inventing and how, if you search, we are all capable of making connections in thought and behavior

We are not so special that only our suffering exists

Our place in the universe is so terribly small and for all of our differences… at the basic level, we are all the same

 

So that right there is the ability to learn two languages

1 English vs French

2 Untrained vs Trained

 

There is also the language Victim vs Everyone Else

If you have never been a victim, you are limited to how well you can understand the trauma someone else (a victim) chronically lives with

If you have never been a victim and you have no one in your life who has suffered and been victimized… you are even more disabled when it comes to relating and understanding the suffering of others

So again, another language I know

 

One language mentioned in the wiki page about Sàndor Ferenczi, that he learned of a difference between the Adult brain and the Child brain…

Example: the little girl is playing house and has her dad play as well, since it is her game/ her world, she plays the part of the wife/ mother and because daddy knows his part already, she keeps him playing that role

At some point in the game, she asks to take a nap, to go to bed and that daddy should go to bed too and be just like with mommy

By this the Child language means… to go to bed, snuggles and keep her safe from monsters under the bed or in the closet

Because, as a child, that is what she knows daddy does for her (the child) and assumes that he must also do this for mommy… and since she is playing the role of mommy in the game, this is what she expects from him without question or need to voice or explain

But

Daddy has the Adult language and what daddy hears/ assumes is that the child wants to be intimate in the same way he is with his real wife…

The languages are confused and that can lead to rape of the child

There was more written to better explain this, but that is the “short” of it

 

I, myself, have lived through the Child/ Adult language problem and I was aware of the confusion… most of my peers would not have been so mentally “awake”

With me, the situation was when I was 6 or 7 years old, I don’t think I was yet 8 years old at the time but it was during those years I went to a French immersion school and had been introduced to the concept of…

The French kiss

By which I mean, greeting someone by kissing them on the cheeks, as is custom in France

The incident I remember was at a woman’s house, she was my baby sitter and she was watching me, a young baby girl and a boy about my age that was related to her in some way

As of now, I forget if he was her son (but I want to say no) or a nephew or grandson

Anyway, the woman had been taking care of the baby girl, I don’t remember if she was changing the baby’s diaper or if I had asked to help

But after the lil girl had been changed and dressed, I remember asking if I could give the baby a French kiss

Even at a very young age, I was good at reading body language and how people behave

The woman’s attitude changed and she had this really odd/ uncomfortable behavior about her body… stiffness, cold, retreating back from me and pulling the baby closer to her

She didn’t say anything at first and the said something about how that was not appropriate behavior and because I was “mentally awake”…

I realized my mistake in the use of “child language” and switched to “adult language” to explain that I wanted to kiss the girl on the cheeks like we are taught in the French school

I remember her visibly relaxing, allowing me to give the kisses but this event stayed with me and I remember analyzing it over the years

 

As I stated, there are now 4 languages I speak and translate to others

It is wonderful when people understand and I have less to translate, being able to speak more freely

Often in my life I have had to play the role of profiler, therapist and translator

Few see life the way I do, not just due to life experiences but also to do with how my brain is “wired”

My 5th language

Me vs Everyone Else

I have never been what society considers normal

I was born aware of the world around me

I know SOME people are born with the ability to remember EVERYTHING in their life and not just a photographic memory but the act of being aware at birth or a young age and forgetting nothing

Not common but they are out there

Just as some people SEE colors or bubbles due to certain sounds

The brain is magic!!

My point being, I do not remember everything but I know I was born more aware than the “average” or “normal” child and I retained more than most

Sadly I am losing these memories and that scares me… I am losing control of what I was born with… part of me is being stolen

From a very young age, I watched people, learned, analyzed and tried to understand…

Not just what I meant to them or they to me …but … the “why” behind it all

Why was my hair a different color now, it wasn’t always red (biologically, in this life time, I have always been red)…. Being under the age of 3 and asking your parents why your life was different than before

Later (around the age of 10) this led me to look at past lives, a very good book I read was “Children’s past lives: how past life memory affects your child” by Carol Bowman

There were other books as well, Linda Goodman and her book “Sun signs” books on true crime, true ghost stories, psychic abilities, the works of Hans Holtzer (spelling?) and so many others.. I loved to read and anything that gave me the edge on understanding my peers and those adults around me… fascinating

With those came a number of flaky people as well… take everything with a grain of salt

I remember being wise beyond my years and using a larger vocabulary to explain this to adults

 

Being a toddler, watching your parents have sex (secretly as you pretend to sleep knowing they will stop if you are awake)

Trying to understand what they were doing, knowing it was a bad thing or a pain thing and trying to equate “sex” and “love” …. I was maybe 1 years old at the time and I still remember this

Age 4 or 5, finding a sex toy (penis dildo with balls) while hunting EVERYWHERE to find hidden christmas gifts so that I could unwrap them early, I was very good at manipulating the tape and rewrapping everything good as new

Seeing this “toy”… knowing it was a fake penis and my only big thought is that “oh… cool, adults have toys too”

Child logic being that I had my toys… stuffed animals, legos, he-man, Barbie and they all made me happy

Thus child logic dictates that as you grow up, your “toys” change but you still have things of one kind or another that makes you happy

I was capable, before the age of 3, to have rational thoughts that were WELL above my child language and child brain

 

Being maybe a year old and working with oil paints and canvas, painting a stick figure woman in a dress and KNOWING that all GREAT works of art have a frame but we didn’t have money for a frame

So I painted a frame on my canvas… problem solved

The hair on the woman was a single lock, sticking straight up from the top, slight curl and a bow in the hair

You see the hair was important because it was like the cat girl in one of the cartoons I loved to watch

I remember being younger than the age of 5 … maybe 3 at the oldest and going to a home run daycare

The woman had a large family and watched a few other children as well

There was a very young baby girl that she watched

I adored that lil girl, I don’t have siblings but for some reason I loved that baby

One day I found out that she had died, a hole in her heart…

Her death was very hard on me and helped me to understand how precious life is

I KNEW adults died and the concept didn’t bother me too much because they were all sooooo much older than me

Adult death didn’t affect me but this baby was close to me in age, relatively speaking and it was scary… kids don’t die, they grow and become adults first

At an age, younger than 5, this information rocked my world and you couldn’t tell me that “God” did this

At this tender age, I KNEW if there was a god, there would be joy if someone left/ died and left others to be alone… like when you put your toys away and go home

But her death hurt people and that just couldn’t be right

All my life I have been ahead of my time and each year pushes me to keep being more, I never get a true rest or reach an “end” goal

Yes, I have been through a lot of things in my life and I have missed out on many other events… I feel cheated due to my health

I feel robbed of who I was, fighting so hard to make sure I don’t slip away like others

 

When I told the neurologist, my huge trauma was due to the doctors…. The people that let me down in America… I said or tried to say that it was like being raped

What I mean to say is that you don’t have to be sexually abused to use that word

It is what we associate… rape and sex

What I mean is… rape… the act of violating someone, against their will, causing severe distresses, being a person of power that withholds proper care, having your life painfully stolen from you and all of the psychological abuse

I had my life stolen from me, I want it back

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Clothing Rant while waiting March 25 2013

We fall prey to the evil clutches of fashion… unless of course you are a nudist… but there are still ways to adorn your body without clothing

I am sitting here in the waiting room with 3 young men, a young woman and an older couple

This gives me a wide range of fashion to observe

Some are practical, others are flashy and some are conservative…

I am showing cleavage *grin*

It is interesting to see the types of stockings or socks worn… thin and expensive taste or simple and sports like

Shoes vary as well but the “running” trend with everything is the need to tell the world

“LOOK AT ME”

The body is a shell we live in, it is not “US” but it is an extension of ourselves and we need to protect it from the elements

We sometimes fall for the latest look, La Mode, which may not be designed for comfort or for good health

But the squirrel in us, or the magpie, calls out and says “oooo shiny! Must have”

We seem to have a need to cover our “shell”, our body with pretty things

We feel the need to fall into the “look at me” crowd

But why

Her young feet are being shaped and molded to a shoe that will cause problems for her toes and there is no real support which will hurt her back and other areas

The young males are not much better off

I know my own New Rock heels (not full boots) are not the best but I like feeling tall

Silly I know

We put so much need into fitting in and looking the part, even if that part is to try to stand out and be different or to hide in the crowd

Who cares

It isn’t important

Most of it stops us from growing as a person… most but not all

We have our heads screwed on wrong

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Health the wait March 25 2013

Back again in some waiting room… in some hidden away area in the hospital  

This type of waiting makes me feel ill

The air is too hot and stale, too many people and the sounds echo

I am waiting to see the neurologist and I feel we are late but you always wait when you see any kind of doctor

It is odd though, very much a labyrinth to find anything and wrong turns happen often

My head hurts

I don’t think it has stopped hurting for a month now

This type of environment never helps, being chemically sensitive and trying to keep calm

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