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feeling a bit more like me … reply to fetlife question “What is sexy to you?”


it has been a while since i paid attention to the words on fetlife

the different types of games or questions

but tonight one caught my eye

superdooper00

(permission given to use his “name”)

asked

What is sexy to you?

pretty random really. Random words even. What sparkles you?

….

confidence without arrogance
sensuality with passion
shy.. yes you can be shy and confident
intelligence
humor
kindness
good voice
good accent
mmmm good command of language, combining voice and accent with proper cadence
speaks more than one language
strong but gentle hands
loves to kiss
above all…romantic

now… if i can have that all rolled up into a military man…

……

….

i know that some will read this and may have hurt feelings

i know some will think they know who i am talking about

but how many will realize i am talking about myself and some of the best loves to have walked into my life

lovers as well as friends

those who know me well can pick themselves out of each word written

or combinations of words

and the ones who know me best will understand how all of the list is me twisted to show the more masculine or dominiant side of my personality

i am a complicated woman who needs my equal

a shieldmaid to fight beside the sword

i know it is hard to find all that i am in someone else

though i do have a bit of a twin halfway around the world

i enjoy seeing the similarities in those i love

and embracing the differences too

thank you superdooper00 for inspiring me tonight

my words are simple

yet it feels good to write again

Any experience with #Lupus #SLE #CNS?


Note: I first wrote this for Fetlife and decided to post here to update those that follow me and possibly reach a wider audience with the health issues I live with

 

Update first and question at the end 🙂

I still have yet to be FULLY diagnosed
what I have so far from seeing GP, Specialist and Neurologist…

1. ANA is at 1:640

2. As of right now I only have 4 of the symptoms for lupus but the specialist is willing to call it lupus (if I could get my records from children’s hospital in the states it would help but that is so damn slow!!!)

3. Had a PET scan done which PROVED!!! that I have PTSD but no one believes me when I say it is because of all the trauma/mistreatment from doctors for 21 years.
The PET scan showed areas of the brain with reduced oxygen/blood flow

4. The neurologist found my ability to distance myself from the pain very fascinating and ordered an MRI of my brain (omg that was fucking cool! loved the binary beats and the sounds and…I wanna do it again!!)

5. was hospitalize end of march for almost 3wks because of a massive flare up and started on new meds ( Esoméprazole 20mg to protect stomach, Kétoprofène 100mg 2/day for pain, Clomipramine 75mg for brain I guess, continuing Tolexine 50mg to help with skin…sorry those are the French names)

6. Still no idea what the MRI says but word on the grape vine (yay for having a hubby with contacts at the hospital) I will most likely be diagnosed with Lupus SLE in the central nervous system (CNS)

7. if I do too much now that I am on the new meds, I really feel it, tried having sex the other week with the hubby…. omg I thought I was going to die
it has never EVER been like this

My brain started to overheat and hurt…not headache but BRAIN PAIN, I could barely breath, I lost almost all ability to use words, some hand gestures I could do, I could not stop crying (body crying vs me having emotional melt down), some parts of me kept twitching but not like a seizure, I could not stop being in the fetal position on my side and rocking….

Took me almost a half hour to calm down my body
my conscious mind was watching this and going “whoa wth!!!”

I don’t have multiple personalities or anything like that, I just have YEARS of analyzing how my body is involuntarily reacting and this was the worst!

So… my question:

1. Do any of you have experience specifically with Lupus SLE CNS?

2. Any experience with the drugs I am taking (USA versions or what not)

3. Anything you can offer me for help in anyway…

Thanks

(armedwithcoffee)

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