humor, i have some…

mmmm i love the smell of burnt moth in the evening
smells so much like popcorn with just a hint of dust

June 21 2013 – Fête de la Musique

France has a passion for music and the 21^st of June was their Fête de la Musique and I spent my time well by being the Paparazzi for my friend and his band mates

With the past few years, my passion for photography has dwindled and I have taken fewer and fewer pictures

Before I could easily take 1000 pictures or more in an hour if I found a subject that seriously interested me, but now I see things I should take a picture of and sort of go…meh

I take great pride in my photography skills, I grew up with a camera in my hand and only had one semester of photography class when I was 15

Everything I know is what I have figured out over the years and what I do… I can’t explain it to anyone, I try things and I know what will work

When I use Photoshop or other tools to alter my pictures, I have no idea what I am doing… ok granted my version of Photoshop is in French and I have NO IDEA what anything is… but I play around and things work out pretty

It is my play time

That is also how I learn best

I used to be able to read books and learn from them or take classes and gain a normal education like those around me but then I got sick and things didn’t work the same any more

So, for me to find interest in my friend and his music, to get out of the house and go see everyone excited and playing and singing and dancing!!

So be there for hours and take nearly 3000 pictures… ok about 25 are movies and another 25 are the doc’s associated with the movies… but still that is a lot of pictures

Granted I would have taken more but my camera went through two fully charged batteries and then I used up the one in my friends camera hahah

It was great

I was on a real high and feeling so much more like myself

But I paid the price for it the next day and a half, almost nothing but sleep, mild fever and the feeling that I had done serious exercises

I hate not being myself more of the time

I know that the more I laugh, go out with people, change my environment, see and play with animals, have music in my life and good people to cuddle with…

The more I have those things, the less I hurt, the less I feel useless and the more I feel connected to myself

I am bored out of my skull when I am at home and it seems I am only productive when I leave the house but I stay at home too much

Easier to sleep than to get up, get dressed and make an effort

I have one friend in France, I know many people that are acquaintances but only one friend… that is very hard for me

All across the world I know thousands of people, all ages, all sex, all religions and all that other stuff… I love diversity and I love people but here I am so alone

Hahah and everyone says get a support group hahah

There are hardly any support groups for cancer near me, let alone anything so mysterious as what I have

But I keep going, not much choice and I talk to my friends on the net and they give me strength but all the virtual cuddles in the world really don’t mean much

*sigh*

So that was my night, hours of music and meeting new people and taking pictures… being me

I need that more often

Must remember….

I keep forgetting to write more of what has been going on in my world…

ok I could mention that lately I have been SERIOUSLY tired and just not interested in many things, or I could say that I have been more active lately and this is most likely why I am so tired..

I have started making friends in the local “big” town, 70,000+ really doesn’t seem all that big to me but well… that is the life of living in the middle of nowhere

My new friend went away for the weekend and left me the key to his apartment…

YAYAYAYYAYAYAYAYAYA KITTY TIME!!!!!

I love his lil cat, she is a year old and goes absolutely NUTS with me, nomming and scratching me all over my arm and hand. It’s awesome!!!

She is free to be her crazy lil fur ball self with me and it is great to see

Having animals in my life makes a HUGE difference on how I deal with my pain and my emotional stress in life… specifically the panic attacks

but having a friend with animal’s means I am more likely to try and get out of my house, go see my friends and in that “big” town… that means a lot of walking up and down hills and staircases

Even simple exercise leaves me exhausted after but I keep trying, life will only get worse if I do nothing but I am a social creature, very much like an animal and I need people

Being alone is very hard for me

It is like being in a holding pattern and waiting to land or being an empty glass waiting to be filled… hahah or a teddy bear waiting for a cuddle

Yes, more a cute cuddly toy waiting to be held and loved

mmmmm… soooo sleepy but in a good mood

June 19 2013

brain is in so much pain

everything is starting to bother me

people talk too loud and cant have full conversations, you know those things about verbs and nouns and all the things you have to have to MAKE a full conversation

it is too hot

i did too much today

took myself and my 15yr old to the doctor to get more medication, i was out of ketum (pain thing) 

it is annoying

when i was at the hospital on friday june 14th (melt down due to emotial/mental abuse in the home, story for another day) i had talked with some therapist guy and some other person about wanting my son’s brain scanned

he had been stressing for a while, trying to hold a panic attack in and deal with the situation at hand

he ended up in very bad head pain, his eye looked like he had been punched and it was blue and his body was decently normal temp but his head was overheating

that is what i go through a lot

when the docs scanned my brain with a PET, the noticed i had reduced oxygen flow to or through the brain

well… he IS my son, why not check to see if he has something similar to me

and today i ask the doc about this

i am not going back to that doc

i dont care how charming he is or how he can be funny

i am tired of him telling me no for everything and treating me like a hypochondriac 

sure i understand the risks of bombarding my son with radiation blah blah blah

i also know the risks of doing jack shit about it

staying call all day when i just wanted to vent at the guy… bah not easy

and there has been flooding

rain for a while now but last night and today where very bad

lots of areas where you could barely drive

my son ended up saving 3 kittens for one of the local cats

 

did i mention i am in pain and would severely love snuggles, affection, a good cry and some ice cream

 

*sigh*

Random Post 1

ok made a huge effort to post the blogs i had written before..

gahhh it is 3am

i realized a while ago that i had only been half organizing my writing and that i had a lot of dig through

which is one reason i didnt start this blog earlier in the year

why panic when you can procrastinate haha

i will make catagories and drop down menus and other…ssshhhhtuff later

i will make it easier to find (because i figured this is easier to give any doctors that want to analyze me) and share

 

gahhh!!

*mega yawn*

 

ok off to sleep

sweet dreams to ya if you happen to be needing a nap as well 🙂

How many Autoimmune Disorders are there

Do you have any idea how many autoimmune disorders there are?
No?

Me neither cause people keep dumbing down the list to only the most fucking popular ones!

And even when you clearly have 2/3rds of the symptoms for lupus… if you don’t have that special rash on your face…omg no it can’t possibly be lupus!!!

Have MS, get a spider bite that swells up your hand… OMG NO!!! it can’t be something other than a flare up of your disorder, we won’t even look at alternatives that could be fucking you over and CAUSING the flare up

You know it is bad enough when you have to wait years to find a doctor that will actually take you seriously enough for 5 minutes to order the blood tests to see if maybe you do have an autoimmune disorder

But when you have been diagnosed with one and the doctors wont properly treat you…

What is the point?

Honestly…

Why should I have stayed alive for 21yrs in chronic pain, with no one that had the power to help me and actually try to take me seriously… try and change my life…

I have waited 21yrs for an answer, for something to change and the best I get is told that others who are diagnosed still get shoddy care and are still suffering

I have been sick for so long that it is a waste to just end it all now, I have no choice but to fight on, force them to find a diagnosis for me and help give me a cure or treatment or if there is none… then find one!

Make one!

I have lived this long suffering that I don’t know I can work as a normal person, I don’t know I can function in society and be of value…

But I have lived this long suffering and I admit that it pisses me off to no end when I hear that others have found doctors that have helped them, that there are others how have been diagnosed properly in under 2 years of symptoms showing up…

It is not that I am pissed off at those people and their good fortune… is that I am am so angry that there are not more cases like them…

People shouldn’t suffer for decades before getting proper help and suffering mental trauma due to how they have been treated by people paid and trained to help them

I don’t know if I can work again and that scares me that I may have to spend the rest of my life dependent on others and it pisses me off

So for now all I can do is wait, research and hope they find something to label me with and start a treatment process

Because as soon as I can, I am going to fight for others like me that are suffering and shouldn’t be

So I ask you

How many autoimmune disorders are there… do you know?

One site says that there are over 80 autoimmune disorders but only the following are listed as common:

An underactive thyroid, also known as Hashimotos thyroiditis.

An overactive thyroid also known as Graves Disease

Lupus

Multiple Sclerosis

Rheumatoid Arthritis

While on other sites you will get a longer list:

Celiac Disease
Crohn’s Disease
Graves’ Disease
Lupus
Multiple Sclerosis
Polymyalgia Rheumatica
Psoriasis
Rheumatoid Arthritis
Sjögren’s Syndrome
Type 1 Diabetes
Ulcerative Colitis
Vitiligo

Now from what I have heard there could be up to as many as 200 autoimmune disorders… what are they… where are the details on them, what are the symptoms, if doctors don’t know how to help us we have to do the research

This site has 50 autoimmune disorders listed
http://www.evenbetterhealth.com/autoimmune-disease-symptoms.php#SAD

but it doesn’t stop there, it talks about toxins in your environment that could be making things worse…

this link lists 63 disorders but nothing else, no books to sell you, nothing about toxins or other things that might get you thinking about your environment and diet

http://immunedisorders.homestead.com/auto_immune_list.html

this link seems to show more names than the others but still… where is this mythical list of 200 autoimmune disorders

http://autoimmunediseaselist.com/

Tramadol & allergic reaction Feb 24 2013

Allergic reaction to Tramadol/Opioid pain medications

 

Just curious

Does anyone with an autoimmune disorder, any kind, have medication allergies?

The doctors gave me tramadol for the chronic pain

I didn’t want it, I was right not to want it but I didn’t know why

My memory is failing me, I didn’t remember that codeine is an opioid pain medication and that tramadol is too …

I know and the doctors know I developed an allergy to codeine

But my brain is going and I forgot

But it’s in my files

And they have the training/learning/taught to be doctors

They should have known the chance of me having a reaction was pretty fucking good

More so when (I later find out) these medications are not good for people with mental disorders (hello I am bipolar but no longer on meds because they stopped working even after the side effects continued) or those with curvature of the spine…

I had a panic attack in front of the doctor because I instinctively knew I shouldn’t have that medication but I couldn’t remember why

And I had showed him spine xrays from 2009 and just had new ones that day which he saw and agrees that yes I have curvature to my spine

There were so many warning flags that should have gone off in his head and he just stood there watching me have a panic attack

 

A week later and I learn all this because I have to teach myself

I have to look on the net

Not to be a hypochondriac but to find validation

 

So… tell me.. I can’t be the only one to suffer side effects or allergies to medication

I am looking for a connection between how normal/healthy people have side effects and allergies to medication vs how those of us with different types of autoimmune disorders behave to the medication

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

 

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 13^th but a room by this number is good enough. For most people Friday the 13^th 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

 

 

 

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