Epilepsy

The other night when my mom and I were in the ER parking lot headed to get my nightly dose of hardcore antibiotics . ( that medication was stopped the day after this )

We saw this women get into her car , and then saw her as her upper body collapse into her steering wheel

I don’t know if it was anger , anguish , grief , exhaustion, or all the above that caused her to have this physical reaction to what she was going through.

But you could tell this women was deep in the trenches of whatever she was facing. .

As I stared at this women through my tinted windows .
I pondered on how I will never know her story .

Heck , there will be a time I forget about this moment .

But illness has taught me that behind “tinted windows “ everyone you know is facing something incredibly hard , that they often don’t speak about

But the thing I find truly miraculous is when people face these ridiculously hard situations, and don’t let it turn them into a hard person .

To be angry and bitter is the EASIEST thing in the world .

But to make something beautiful from pain .
Is where the real work comes In

I thought of so many amazing people in my life who have this amazing quality and have turned their pain into something beautiful.

Until I heard a small voice whisper to me

“ This is where you need to give yourself some credit .. You have done this to “ ❤️‍🩹🥹

So to all those who are going through exceptionally hard things , and it hasn’t made you into a hard person .

Know that is an accomplishment beyond comparison ❤️
And I am so proud of you .
#Spoonie #chronicillness #mcasawareness #raredisease #cvid #positivevibes #faith #keepgoing #mentalhealth #mindset #Epilepsy #Undiagnosed

Dr. Vohra (my psychiatrist), I think now we have hit the bullseye with regards to the meds. However, I’d like to give you some feedback and input about it from someone who has lived it. Firstly, it’s going to be an opinion with a heavily biased psychopharmacological perspective. I was prescribed Mirtazapine at the start of my treatment. It worked wonders. I’m not sure how it’s classified now as a NaSSa or a an atypical antidepressant. I know though that it works on Serotonin and Dopamine. I was prescribed Sertaline after a while, maybe because my doctor thought it had become ineffective. The sertraline is an SSRI and with my history of substance abuse, I can only compare it to ecstasy or MDMA. I experienced tingling and sensations in my jaw which caused it to shake. After a couple of weeks this subsided, but it’s from then it made me feel awful. I was prescribed Tramadol at the time for sciatica and I subsequently had three epileptic like seizures. I professed to the health professionals that cared for me that I was on the two drugs and I was maybe experiencing serotonin Syndrome. This fell on deaf ears. I have since come off both medications and had no repeat incidents of fits.

As a result of this, I was awaiting my appointment with the psychiatrist and my GP prescribed me Depakote. It’s an anticonvulsant as you know and it’s strength of dose targets the ailment. It’s around 500mg for migraines, 1000mg for epilepsy and 1,500-2,000mg for bipolar disorder. It’s also used for schizophrenia too. So you can surmise it is a potent drug. I attended my second appointment with my psychiatrist after commencing Depakote therapy and I wasn’t able to speak to the psychiatrist. I wasn’t able to even grunt or shrug my shoulders. Medicated to the point of anonymity.
With a mood stabiliser like Depakote and an antidepressant like Mirtazapine, it causes a monumental shift in mood for Bipolar sufferers that are exaggerated to the extreme boundaries ever experienced. You are calm one minute then you’re orbiting the moon the next. You are more spaced out than Neil Armstrong ever was. I don’t fully understand how it works, but you have a drug to stop you going too high, another drug to stop you going too low, then a further medication to hold everything in place. Some drugs work in tandem with others to achieve this.

For example, I was on Depakote as a mood stabiliser. I was also on Quetiapine as an antipsychotic. These two however have the potential to be detrimental to each other and effect how proficient each one is in treating your problems. I know it’s not up to me to pick and choose what I take but if I’m taking something then I want it to be the best possible medication I can have.
I now take Lithium (600mg), Olazapine (20mg) and Fluoxetine (20mg). Olazapine and Fluoxetine work well together. Olanzapine is an atypical antipsychotic, just like Quetiapine I was on previously. The dosage for Quetiapine ranges from 200-800mg, at the end of my relationship with Quetiapine I was on 750mg a day. The pharmacist at my local chemists pulled me to one side as I went to pick this up to double check it was right. They’d never administered a dosage like it before.

So I’m taking an SSRI, so it stops my serotonin being recycled and keeps it in the part of my brain to be effective. I’m not sure of why this is but I’m taking atypical antipsychotic which effects my serotonin and with Olazapine it blocks my dopamine too. I don’t think Quetiapine does this. Dopamine is the pleasure monoamine that causes reward pathways. Cocaine for example hits every major monoamine in the brain and stops their re uptake to cause an overload of brain chemistry. Crazy isn’t it?!?!
I feel disinterested in some activities that arise and my participation in my hobbies is wavering to say the least.
The one thing I can categorically say is that medication for mental illnesses might control the severity of the extremes a person goes through but it also stifles any expression a person has and you are bereft of any enthusiasm to be the person you are.
#MightyTogether #BipolarDepression #Depression #lithium

“ You can do ANYTHING but you can’t do EVERYTHING “

my 9 year old niece said with a smile ..

I smiled and asked her how she got so smart ,

And she beamed and she replied

“ My teacher taught me this ! “

( insert digital high five to her teacher here )

This is something I constantly struggle with

But I feel like I’ve been struggling with even more lately .

As you know I have a highly active highly motivated mind ,
Shoved into a body that simply doesn’t work , and likes to plot my murder .

For me it always seems like im striving and dreaming of doing more .

When my health is in a decline .

They say “ You have to rest to heal “

And I guess for me , that part .. the rest , the “doing less “ when some days you feel like you can’t do anything at all , almost makes healing hurt in more ways than one .

But I’m going to remember that I can’t do everything .
But I can to hold on to the simple things .

Like a good book , a perfect niece , and a moment of peace in the chaos

My goal is to strive for more moments like this .

#smileon🐷 #ChronicIllness #read #thoughts #rambles #johngreen #dreams #aspirations #keepgoing #RareDisease #healthdecline #CVID #Epilepsy

In the midst of, drama and chaos lies art. The refuge for my spirit and soul. What makes this time so special is that my daughter and I I spend time on the weekends and weekdays for thirty minutes or three hours. She’s the color in my world. She makes all the appointments, surgeries, treatments, hospitalizations worth it. She’s been the reason why I get up every day. I’m a single mom and both my daughter and son developed about 7 -10 of my diseases. I have severe systemic disease, autoimmune and connective tissue, causing Crohn’s endometriosis, demyelineating syndrome, degenerative spine disease, primary imomunudeficiency disorder, epilepsy, localized scleroderma, migraines, interstitial cystitis, and DISH. Art allows me to process and find a place of sanity amidst much disorder. When I see beauty in the world, like a sunset or piece of artwork, it is my reminder to stop running and appreciate the beauty and that it is a miracle. No matter how bad my day was I always knew I had the sunset. And if I wasn’t going to appreciate the sunset and leave the world a little better than I found it, then why was I here. I thrive on color. I’ll use any thing I can get my hands on a pen to draw or a needle for needlepoint.