November 7, 2014

THIS IS MY BRAVE




once upon a time, i used to write a blog
and
then P.A.N.D.A.S came to town
and
shut it down

P.A.N.D.A.S turned my world upside down
it hijacked my brain
and
it made me terrified of everything

P.A.N.D.A.S will do that to you. 

what is P.A.N.D.A.S?


P.A.N.D.A.S is a cuddly acronym for a condition that is anything but. however, it does make for a memorably complex name - P.ediatric A.utoimmune N.europsychiatric D.isorders A.ssociated with S.treptococcal Infections
P.A.N.D.A.S is a condition brought on by exposure to the bacteria streptococcal-A (GABHS) infection, the bacteria that causes strep throat (albeit, it can also be caused by a virus or parasite). The disease turns the body's normal antibodies into dysfunctional ones that attack a part of the brain called the basal ganglia, which controls movement and thought. Bizarre behavior results, often causing a misdiagnosis of purely psychiatric illness.
The hallmark trait for P.A.N.D.A.S is sudden acute and debilitating onset of intense panic and anxiety disorders, mood changes that is accompanied by obsessive compulsive-like issues (OCD) and/or tics. urinary frequency, inability to concentrate, developmental regression, sensory sensitivities, insomnia, phobias, separation anxiety and movement disorders ensue.
http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/
http://pandasnetwork.org/DALE2003autoimmune%5B1%5D.pdf
http://www.nimh.nih.gov/health/publications/pandas/index.shtml


that is P.A.N.D.A.S in a nutshell.

in May 2014, i was diagnosed with P.A.N.D.A.S
(this is in addition to my lyme and associated co-infections.)
the diagnosis of P.A.N.D.A.S came 8 months after i had a sudden onset of social phobia, separation anxiety, panic and anxiety attacks, paranoid delusions, intrusive thoughts, depression, pre-occupation with death, suicidal ideations, plans-to-end-it-all, tics and OCD. 


on the harrowing 8-month journey to my P.A.N.D.A.S diagnosis, differential diagnosis considered by mental health professionals included schizophrenia, bipolar, and dissociative disorder.

this disorder is considered relatively rare and is predominantly seen in the pediatric population. it was only identified in the late 1990's, making it even harder to find a doctor who's up on the current literature enough to recognize the clinical signs. the symptoms of P.A.N.D.A.S can be eerily similar to lyme but it is a separate entity all unto itself. this is why the diagnosis took a long time and was difficult to make. in very short, it took a brain EEG, a positive GABHS test result and a trip to DR H to finally put the pieces together. (i will write about the diagnostic journey in another post)

to say this past year has been hard would be the understatement of the decade. having your brain hijacked and falling into the deepest recesses of mental illness has a way of splaying you open and gutting you.

i am in the process of healing and recovery now. after several months of meds and antibiotic treatment for P.A.N.D.A.S, less coffee (ghastly sacrifice) and more chamomile tea (gag-worthy), intensive therapy and biofeedback to help my brain re-wire, i am emerging again. many of the most paralyzing psychiatric symptoms have resolved - but the social anxiety and social phobias still linger. this business of socializing - whether in person or on social media is still quite frightening for me. and while i know it's mostly irrational, my brain still interprets it as scary and threatening. 

sometimes i still feel really terrified. and like i just want to hole up and hide forever. this is new territory for me.

i am working on writing about this chapter in my life. the hubster has encouraged me to write about it. i know this is the next best step in my recovery. writing helps me heal. and i am always hopeful that my story will somehow help someone else heal too - or, at the very least, feel less alone. 



i write nearly every morning. indeed, i have already written pages and pages of journal entries, yet, the thought of putting my writing out there, leaves me sweating bullets, stomach clenched, pulse pounding in my ears, adrenaline coursing thru my veins and bile rising in my throat. and this happens regardless of the subject matter at hand - whether its wanting to share about the tough stuff or the good stuff or even just posting something relatively benign or silly or "liking" something on facebook. 

the fear and anxiety about this can get so big and overwhelming that i begin to feel really small and insignificant. and that my story really doesn't matter. and who am i to think that anything i can say will really make any difference anyway. i don't like having those feelings, so i try to avoid them by making myself really, really busy...

like even CHOOSING to BE in our kitchen and COOK and BAKE stuff. for real. (just so you know how out of character and unusual that is for me, during the 6 years i spent as a single mom, taylor specifically prayed (probably pleaded with God) for a dad who could cook. no lie. and God answered by sending us the hubster and he is a really, really good cook)


i have also been dressing up the dog & photographing him
or
helping him make crafts
or
sew himself a wardrobe

like i said, i will do ANYTHING and EVERYTHING to make myself too busy to launch my story into worldwide orbit.




the weird thing (even more weird than the dog sewing), is that i have always written raw and real and that was never scary to me. but it is now. yes, a lot has to do with the residual effects of my brain getting a good knock about from strep, but i think, if i'm really honest, the reasons are more complex and multi-faceted than that. really, the truth of it, is that i'm scared that talking about it will make people feel all awkward and weird around me
and
maybe even a little bit of nervous to be around me
or
that some will just outright reject me

because here's the thing;

mental illness is polarizing
everyone has an opinion about it
often it is the judgy, condemning ones that sound the loudest
and
that breeds fear and shame

there's another thing too;

who am i to stand here and shed light on such a complicated and difficult subject anyway?

sure, i have lived through a year of infection/autoimmune-induced mental illness but i am very aware that this hardly makes me an expert on the subject. i know i must tread careful and sensitive into this territory. really all i can do is find the courage to share the truth of what my family and i have lived thru this past year even though i am scared to talk about it. 

and how do i even talk about it when i am still healing from it?



this is my brave - this year, well it swallowed me whole.  it took me to a place, where fear was paralyzing and hopelessness pervasive. it took me to an alternate universe that i thought even God would not dare tread. it took me to a place i thought was beyond the reach of God. 

and when i came to the end of myself, this is what i discovered;

jesus was in that pit
holding me the whole time
and
that, well that i want to write about. i want people to know that there is hope. life is scary. it's hard. it hurts. and we all walk around trying to mask our fears and insecurities. to appear put together enough. strong enough. happy enough. confident enough. and maybe we are all afraid that if we reveal our true selves, people will run away from us.

maybe they will
but
maybe they won't.

you know what? something i've discovered over the last little while is that when i've been brave enough to share with folks what i've been thru this past year, they can relate to some part of my story. maybe they know someone that struggles with mental health issues or maybe they themselves do. and i have had the privilege of having some very precious and brave people lean in close to me and whisper, "me too".


that is the beautiful thing about being brave enough to be honest about your pain....it also frees others up to be brave. to say 'me too' and there is healing in that.


one last thing.
it is gonna take courage to post this.
oct 9 was P.AN.D.A.S Awareness Day. i had full intentions on publishing this post that day...but the dog was in desperate need of a new shirt so you know i got busy taking on that really important and worthwhile task.

it's now nov 7. if you are reading this, it means i finally worked up the nerve to publish this and post it to facebook.

it also means that i have hit publish and am fighting the urge to take it all back.

and maybe folks are gonna read this post and wonder how to respond...or they won't know what to say or whether or not "liking" it is appropriate or not. you might even think that in my socially phobic state of mind that any sort of response will freak me out.

and you know what? it probably will.
but
i've thought long and hard about this and i think a lack of response will probably freak me out even more.

so i'm going to be brave and say please go ahead and 'like' this. i know i might feel a bit scared by that. i also know that you might feel a bit scared to hit that little like button. it will take courage. it might even take more courage than you can muster today - and that is ok too - but your like, well, it just might help us all feel a little less alone and a little bit braver about our own secret stories. 

let's all be brave together.









5 comments:

Alexis said...

Shannon,

I don't like this, I love it!! AND, more importantly, my little crow friend!, I love YOU!!

Cawwwww, Cawwww!! <3

Kristie de Jong said...

Shannon, thank you for choosing courage, for choosing bravery and for choosing vulnerability even when everything told you not to. {hugs}

Anonymous said...

I can definitely sympathize. My two oldest children have PANDAS, Lyme and various coinfections. It took doctors almost a year to diagnose my daughter and after trying every psych med under the sun and almost losing her twice from suicide attempts, a God send of a pediatrician finally diagnosed the PANDAS. She still has some residual social anxiety but a tonsillectomy and some natural treatments got rid of the anorexia, hallucinations, voices and other major psych symptoms. Good luck on your journey and hang in there!

Patti said...

Oh Shannon,

know you are not alone.

I've struggled with crippling social anxiety my entire life and it's devastating. I tell myself that I can DO IT SCARED!!! all the time. sometimes it works and sometimes, I just cannot muster the courage....but talking about Mental Health is so important because there are so many who suffer alone and they don't have to......

Speak it loud and be proud. Be proud of the days when you have the courage to stand strong and even those days when standing strong means just continuing to breathe......

Every day is a win......even if it doesn't feel like it.

Christine Heffer said...

I missed your blog. Your witty humour and honesty when dealing with all that you and your family has endued help me when I was struggling. I hope I can return the favour and tell you I'm looking forward to reading your blog again. I've missed you.