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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

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… 

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