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

Back home and the brain has been scanned


Note: I have many blogs to post on my health, back logged and only just transcribed them from print to text… being in the hospital with nothing but time to kill and no Facebook gets you working quickly

 

Now to get up to date

Once again I am in the hospital

Today I have FINALLY had the magical, mystical machine which does the amazing thing, called the MRI …oooo…ahhh… bow down in awe

Really it is an awesome adventure

The different sounds and music remind me of the binary beat videos I watch on YouTube to help me relax

The only problem I saw with it …

Being short the pillow they use under your legs to help you rest well, just too big for me and they didn’t have anything smaller

It was a bit hot as well

I noticed a few times my heart started racing out of my control, as if a panic attack was being remotely triggered but I took control and calmed my breathing

I was very sad I didn’t have my camera with me

I think I could have talked the tech guy into taking a picture for the scavenger hunt

He seemed kind of disappointed when I mentioned being married

Probly due to the fact that I told him why I wish I had my camera and that I write a sex blog

Men are far too easy

Seems that the women in France, in general are far too timid when it comes to talking about sex or other things that I find easy and want to explore

It is almost time for lunch

They are going to feed me, give me the paperwork and send me on my way

I am excited

I hope this is the last of the tests I need to do

I hope I will have answers

I feel ok

I have had my body scanned for years with nothing as a result

There is only so much the body can tell you

It all starts in the brain

And I had been begging to have my brain scanned for decades

Now I have reached my goal

I can stop fighting so hard now

I still have to push to get the results and then a treatment plan but…

The hardest part is done

 

Highly functional, back to the hospital


Note: this is the last blog for today, I am heading off to the hospital soon and will not have internet connection but I will take my laptop and create more blogs to post

I know I still have to finish the 30 Days of Kink and there was a Meme that Innocent Loverboy included me in… I know I have been bad 😦 lol

hahahah almost wrote title as Highly Fucktional *mad giggle*

 

I was on Facebook last night and it crossed my mind…
I know that a lot of you out there in Internet-Land like my writing and who I am and all kinds of other things about me…

But if you have been following my health updates…

My brain isn’t functioning at full power (low oxygen/blood flow in a few areas)

A very good example of how it affects me, is that I can’t do math anymore (simple addition only off the top of my head, slightly more complex on paper) and I used to be in advanced math and science classes during high school and that was even while I was suffering from 3 years of horrible health issues

…so… just think what I will be like when I am not in as much pain and using more of my brain

 

I really can’t wait for the neurologist to read through my blogs (granted I will give him the more “tame” versions) and help him understand who I am vs what I should or could be

I know that I seem normal, that I am highly functional and I am betting that most of his patients are coming in and they are not as highly functional as I am…

I want my life back

 

So off I go to the hospital tonight, the MRI tomorrow and hopefully an answer

My guess, for years is Lupus SLE focusing on the central nervous system… we shall see

 

Love ya all, keep following

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… 

E.B. Starpointer

erotic author and sex-positive male commentator

An Accident In Space And Time

Just your average, friendly Vulcan

Exposed Loving

Be Love. Bring Love. LOVE.

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