pain level 0 to 10 or 11 to 20


So, I’m up late writing my symptoms list for 2015

hard as always to face this crap

but getting it done…

few triggers tonight

almost done translating it for the doctor

since taking the coconut oil (April 2013) and adding other things slowly since then..

I have been getting better (autoimmune disorder)

which means I would like to reevaluate the pain scale of 0 to 10

I would like to say that the average person is a 0 to 10

but those of us with high pain tolerance and / or chronic sufferance are more 11 to 20

so I used to be (since 1990/91) a constant 18/19 on average days and more of a 16/17 on really good days

but as many of you know, doctors and staff always say those numbers don’t exist and I have to limit myself to what “normal” sick people face

I am more of a 15 on average now

still high but better

lower to a 13 on good days

which is great

I am by no means anywhere near what “normal” sick people face and I shouldn’t have to debase myself to the same level as someone who has never and hopefully will never suffer chronic pain

I am still not a 0 to 10 person… maybe one day… but not today, not yesterday

now, feeling better is great but when you feel better more often, the bad days spike all the harder because you are no longer chronically on coping skills for that higher level of pain

when I suddenly find myself on the side of a “bad day(s)” … the pain hits hard

from 13 to 15 all the way up to 19 in seconds

just like a 0 to 10 person suddenly going from 3 to 9

I still don’t remember what it feels like to not be in pain

but I do know I don’t want to be

I know it is not “all in my head”

I KNOW I am not making myself sick or looking for attention

yes, sometimes my mental disabilities do exacerbate some of my physical symptoms

but after 24 out of 36 years… I know the difference and I have learned how to (usually) calm myself in a panic attack and thus end those “bonus” symptoms

the rest of the symptoms are always there

I don’t expect everyone to know what I am talking about or going through

but it helps when people at least try to stop judging and stop forcing what “normal” people go through

on those of us who are different

not everyone fits into a cookie cutter mold

please be kind to those of us who suffer

we all come in different varieties

that is what makes everyone wonderful

please don’t make me or anyone else fit a mold that isn’t us

Update of brain scan


Note: this is the 3rd blog to update where I am with all of the tests that have been done lately and the two prior blogs, a “cover letter”  ( https://lilmissshalla.wordpress.com/2013/03/24/cover-letter-to-doctors-specialists/ ) and the list of symptoms ( https://lilmissshalla.wordpress.com/2013/03/24/list-of-symptoms-2013/ ) that I plan on sending to the various Doctors and Specialists that are starting to pay attention to me now that I have more proof of being ill…

please, PLEASE be respectful, this is MY LIFE and I will not put up with any more people telling me to give up on looking for answers to why I am suffering

 

Summary:

So the last time I was at the hospital, it was to see the specialist who is taking care of my illness that has taken over my life for the last 21 years

That blog just prior to seeing her can be found here: https://lilmissshalla.wordpress.com/2013/03/15/visit-with-the-specialist-round-2/

 

Well she ordered a round of PET scans and aside from the annoying table you have to lie on and the IV in the arm… the test went easy enough

Considering you don’t move… at all…

It the table was just a lil wider or had arm rests to help you STAY still, then it would have been just peachy but they don’t and it is a real bitch to not move when you have to keep your arms at an awkward position for 30 minutes… without moving!!

 

After the test I was able to talk to the man in charge and the doctor seemed upset

He had that OH FUCK! IT AIN’T GOOD kind of worried face and did confirm that there are areas in my brain that are not working just right…

I was very happy about this and I know that he was HIGHLY confused, thinking that I must have misunderstood but confirming with him that I have been sick for so long and everyone saying I am just making things up for attention… well at this point I don’t care what I have, just prove me right and make me better!

 

We spoke for a while, he liked that my English is clear enough to not cause him problems if I need to say something that I can’t translate into French

 

He showed me some pictures of the scan and kept asking if I ever suffered from diabetes or hypertension and making sure I am only 33 years old

I seem to have areas in the back of the brain and more to the left side than any other areas (not that I was able to spend a long time studying the images) which showed up as being abnormal in some way

He was able to confirm that I am not clinically depressed like some people feared (I wasn’t one of them, I know I am not depressed, I am angry and panicking with years of justification due to emotional and psychological abuse from crap doctors)

He also stated that it seems I have less blood flow/oxygen flow through these areas and that might be why I am in such constant pain and could be due to the lupus or autoimmune disorders but that is not his specialty

He wrote up a report and sent that to my specialist and she has ordered I have a meeting tomorrow (March 25th) with a neurologist to properly go over the results and tell me what other types of brain scans I need to better identify what is happening in my head

 

And THIS is why I have been trying to get doctors to scan my brain with something that shows activity in the brain… blood flow… I have been trying for so long to get anyone to listen to me and help figure out what is going on to cause all of this pain

If it hasn’t been physical prior to this, like some doctors thought, then it had to be something in the brain and that does affect all things physical and either way… I WAS RIGHT!

 

I am not trying to make myself sick

I am and have been trying to teach myself to listen to my body and to understand what the fuck it has been trying to tell me

What really hurts the most is that so many TRAINED PROFESSIONALS refused for so long to see the signs in front of them and I HAD to teach myself, at my own expense, how to speak their language and push for the tests I needed

 

It’s all BULLSHIT… no one should have to suffer like this, there is just no excuse for it

 

So tomorrow I see the neurologist and things WILL go my way, I will get the help I need and the ball will continue to roll… I will have results

 

Cover Letter to Doctors & Specialists


Note: this blog I will post a “cover letter” to the list of symptoms in the prior blog (https://lilmissshalla.wordpress.com/2013/03/24/list-of-symptoms-2013/ ) and is what I plan on sending to the various Doctors and Specialists that are starting to pay attention to me now that I have more proof of being ill…

after this blog I will post a 3rd blog to update where I am with all of the tests that have been done lately

please, PLEASE be respectful, this is MY LIFE and I will not put up with any more people telling me to give up on looking for answers to why I am suffering

 

Dear Doctors and Specialists:

 

I know that the symptoms I list are or can be read as contradictory to how I behave in person…

Due to the fact that I have been a single mom, I have been a leader and I have had to fight to have multiple doctors recognize and acknowledge my illness which has spanned 2/3rds of my life…

21 years out of 33

 

I have not had the option to be weak

 

Some days are worse and I cannot function or hide the pain and illness from my children or friends.

It is these days when I cannot be “normal” that scare the people in my life, because they all know how hard I will push myself to live, to have a life and to keep going.

I live day to day with chronic pain, fatigue and the fear of never being able to support myself or my children… it is that fear which motivates me to fight anyone that says I cannot do what I do and still be in pain.

 

The following list of symptoms took me months, if not years, to write simply due to that fear eating at me each time I sit down to think and everything vanishing from my mind.

For each pain I list, I have had to stop and sit and listen to my body…

When you live with pain as long as I have, the pains just meld together and it is only when you have an area free of pain that you notice the change… or if the pain gets worse.

I don’t remember how it feels to not have pain, I have memories from before the pain but they are just meaningless images with no reality for me anymore.

 

I avoid medication because the majority of the time…it doesn’t work at all or it stops working or I become allergic to it or I am the rare freak that suffers the severe side effects.

I have learned on my own to cope with music, meditation, visualization, diet changes or anything else I could learn to disassociate from the pain… simply because in America, no one believed I was ill even when there was proof if they would only look for it and in America there is no help for those that need it.

So I coped and I am still coping…

I have two decades of mental abuse from doctors and others around me saying I am just looking for attention…

 

Please help me to live and then help me to help others like me, those who suffer from invisible illnesses… 

List of symptoms 2013


Note: this is a list of symptoms I have been suffering from and I am only paying attention to the last 5 years unless otherwise noted on the list.

After this blog I will post a “cover letter” that I plan on sending to the various Doctors and Specialists that are starting to pay attention to me now that I have more proof of being ill…

and after THAT blog I will post a 3rd blog to update where I am with all of the tests that have been done lately

please, PLEASE be respectful, this is MY LIFE and I will not put up with any more people telling me to give up on looking for answers to why I am suffering

 

Symptoms from last 5 years…

Overall mood:

Mania (more so with higher amounts of insomnia)

Panic attacks and anxiety (worse than usual but all based from valid reasons)

Feeling overwhelmed by the smallest things

Easier to anger/harder to cope

Lack of interest in sex

Lack in interest in most things

No energy (body and mind)

Feeling separation between body and mind

 

Overall Mind:

Issues speaking/finding words

Issues typing words in correct order… similar to dyslexia

Insomnia (various levels of intensity and length of attack) or chronic fatigue and exhaustion after exertion

No concept of the passage of time (damn near all my life)

Loosing track of time (more than usual)/spacing out/brain fog

More easily confused and forgetful

Ability to look at or hear information/data and have it mean absolutely nothing

Unwanted memories that replay over and over when trying to sleep

 

Overall Body:

Lack of thirst (since childhood/early teens)

Twitching/spasms, body movements becoming erratic (example: brushing teeth and suddenly tooth brush is in my eye)

Handwriting becoming worse/erratic

Balance issues

Random pains in muscles, bones, skin and rest of the body (various degrees of pain from mild and annoying, to intense and swift) more pinched nerves in hands/arms/back/legs including random pains like being a voodoo doll

Difficulty eating ANYTHING/EVERYTHING

Hot/cold flashes worse with menstruation, with or without registered fever

Random rash on arms/ sometimes face/back

Difficult to lose weight

Pain medication does not work or causes side effects or allergic reactions

 

Exterior area of the body etc.:

Skin & Hair:

Slow to heal

Some scars are fading and some random new scars I don’t remember making

Dry skin and oily skin on face, shiny skin on hands and nails

Acne (cysts and deep nodules)

Moles of different types/size/color/shape and skin tags

Sun sensitivity, including red face with two white bars, one on each side of the face like extended smile after exertion in the sun

Severely sensitive to cold and touch and sounds (can hear electric magnetic frequencies of items/power lines and FEEL ILL too close to nuclear power plants)

Negative reaction to face touch test

Cold nose/fingers/toes, finger tips will usually turn paler when very cold, sometimes red as reheating but never blue/purple

Dry eyes/lips/nose/mouth

Every month small sack/cyst on right lower eye lid

Eye and hair color fading, hair is slow to grow

Some small varicose veins on legs

Short thin blond hairs on face, like cat

Hair follicles in 3 types (white thing attached to hair tip, colored thing at base with long clear jelly like covering up the hair, same as last plus extra/larger thing at top of jelly like thing)

See image…

 Image

 

Nails:

Pale, thin, chipped at edges, striated and occasional small pits

Occasional white marks (calcium loss)

Puffy/red/small sores on skin at base of nails (not all the time)

White tips of nails are not always solid white, sometimes can be see through

Toe nails have undulation + striation, will sometimes grow new nail under old nail and pinky toes often have something solid like area on heels that need to be sanded down

 

Inside Body …Head:

Pain in the brain including but not limited to headaches (all 4 types)

Pain behind eyes

Bad teeth/gums

Vision problems (sparkling/floating spots, floating weird shaped things/see through, never sharp enough vision)

Sound in ears like wave lengths/high pitched sounds without explanations like damaged hearing or floating bones

Neck/throat sensitive to pressure

Low grade fevers/temperature, warm or cold when others feel the opposite

 

Inside Body …Trunk:

Occasional pain in chest

Occasional tingling sensation in morning when breathing

Abdominal pain with occasional harder section in abdomen, worse pain when pushed around belly button area

Leaky gut? Unexplained fluid retention

Slow digestion, acid reflux/sour stomach

Bloating (worse with period)

Painful period/ovulation and clotting during period

Pain during sex

Seizure like twitching in small amounts after sex/orgasm

Tender area in breast, usually just before period

Back pain mostly in lower back but from time to time all over spine and in shoulders

Popping sound in spin/hips/joints

Darker urine in the morning

Occasional incontinence (usually when sneezing or seriously yelling at someone)

Swelling/pain in hands and feet (more in the morning after waking with feet)

Occasional cysts in wrists that will last for months or longer then vanish

Weak wrists

 

Inside Body …Legs/Hips and Below:

Pain in hips, sometimes hips will try to separate, worse after activities

Pain in legs/ass due to sciatic nerve (down ass to ankles, sometimes front and back of legs)

Pain in shins and top of foot after or during walks (random), feels like cramp

Weak ankles

Swollen ankles

Random pain in leg bones and muscles

Random numbness

Slight swelling/full feeling and numbness on bottom of feet first thing in the morning

 

visit with the specialist, round 2


I saw the specialist yesterday…

I admit that I don’t remember some of the things that were said, it can be rather stressful when you are trying to hold back or control a panic attack

From what I understand, they seem to think I only have 4 of the 11 lupus markers, so calling it a type of lupus but not full blown.

When I was younger (age 12) and all of this was starting… I had so many more of the symptoms but over the years I have been able to avoid being in environments and foods that will trigger flare ups

While I should be celebrating that doctors are starting to label me with lupus, I am not satisfied

I have been waiting so long for this and fighting so hard to get people to listen to me

I don’t want a label, I want an answer and then I want treatments but I will not be satisfied till I have more tests

I need more tests

With my normal (general practitioner) doctor, I had requested to know what my vitamin D levels were. I know that some of my family members suffer from low levels of vitamin D and that can cause a number of symptoms and make health issues that much worse

So it seems my vit D has been low but no one saw fit to give me meds for that or to tell me…

A lot of my tests are slightly too high or slightly too low for “normal” and when the fuck have I EVER been normal!?

I voiced my anger at the twat junior doc I saw last visit to the hospital, that he had failed to know my information and failed to understand that the medication he prescribed to lower my pain… has a number of warnings for people suffering from curvature of the spine, mental disorders (including panic attacks and bipolar, which I have) and gave it to me anyway

I mentioned that I was angry at how I thought I was supposed to have a biopsy on the gland in my mouth but all they did were a bunch of blood tests and an xray of my hands and spine

So Monday they want me back at the hospital for more tests

This time I will have a scan, in France that can mean just about anything and often they use the tag name MRI (ok in French it is IRM) but if you ask them EXACTLY which scan they are talking about…you might just get an answer

So they will have me submit to a PET scan and see what the fun things my brain is doing

I really feel bad for having my panic attacks and for rejecting the idea of seeing a therapist, it’s hard to explain to them just how traumatic it is for me to be with the doctors

For me, it is like being in the same room as a rapist and having to keep calm so nothing happens to trigger a worse situation and they are the one taking you home…

It is really hard

If the doctors in American had paid attention and tried to help me, my mental issues would never have gotten as bad as they are but for all that, I do much better than most to control my problems

I know I can’t always have a panic attack, even though sometimes I need one… there are times when I am not in a safe location or I have others I am responsible for or have to be strong for them

Which makes it hard for people to believe me, it is easier for them to think I am faking it but when you have no other option than to control yourself… that’s what you do

So seeing a shrink, for me, isn’t going to help in this case… not to forget the language issues

I have been studying the mind for most of my life, learning how people behave and why and how this affects me and I have been in abusive and violent situations…

I can’t always help myself but I do try and in the mean time I make an effort to heal others and learn new ways to help myself

So yeah, I am scared about Monday and the tests

But as always

I am more scared that they will find nothing or not enough of something

E.B. Starpointer

erotic author and sex-positive male commentator

An Accident In Space And Time

Just your average, friendly Vulcan

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