weebleswobble

This is one of the #RareDiseases I live with every day 🦓🦄
I am a zebra.

The picture shows the path of the nerves and where it can fire off in my head face jaw teeth nose eyes throat ears anywhere really.
Trigeminal is just one name it is just one branch of one nerve. There are many more names of other nerves in the cranium. I can't say them pronounce them spell them.
I know I have another one. As I have it on BOTH sides of my face.
I have bilateral facial pain with migraines and aura too.
I just wanted to share to educate
You see me hashtag my trigeminal neuralgia and many wont have a clue what it is.
I didnt 🤣 I thought the ENT was swearing at me as I burst into tears. As he dismissed me.
So this is one of the illnesses the conditions the diseases.

I take anti seizure meds for it. Pain meds dont work. I have hundreds of triggers. Smiling is a trigger talking is a trigger.

But guess what!!!!.
I smile and I talk all the blooming time with a scarf wrapped round my face 😁😃😄😀💗❤💋🦓🦄🦓🦄🦓🦄🦓🦄🦓
Cos I am the Storm #Bekind ##RareDiseases #Love yourself #sphincterofoddidisorder #Arthritis #Anxiety #PanicAttacks #ChronicPain #Chronicpainwarrior #chronic illnesses #MightyPets #bethestorm #weebleswobble #Love yourself

Hi Y’all-
I’m Sara. I’m new here but also not.
I know I haven’t had much opportunity to open up on The Mighty. That said: Simply being able to read and press the ♥️ button has been an INCREDIBLE HELP. THANK YOU FELLOW MIGHTY WARRIORS!

With that in mind- let me jump on into the deep end (I’m talking diving via springboard-nose plugs and all) of the pool.

I absolutely dig the “Favorite Quotes”
Post (?) Pardon-as I learn more Mighty jargon 😉☺️...

Today- I put a quote up in that thread. Total ‘No Holds Barred’ I could think of many a quote- and will probably add more.
But I digress-

The quote that popped into my head is from a band named ‘NoMeansNo’
The quote:
“Nonsense is better than no sense at all.“
From their ‘0+2=1’ Album.

The thing is - the quote has always stuck with me for various reasons-
Recently, however, it’s become emblazoned in my heart 💜 and MIND.

It has become even more special to me b/c My Best friend
(aka- the FAMILY I Choose) of over 25 years passed away not even 1 year ago (2019)
His birthday was March 11. He would’ve been 46 this year.
Now, Myself and Family/ FRamily alike, must get through April.
April will be 1 year of his passing.
I’m a bit all over the place.
Pinging from thought to thought- just as I did as the dancer that I once was...literally Spinning and jumping-
Only now, the landing is tougher.
The spinning doesn’t stop- even if I look at one fixed point in the distance
(as dancers are trained to do so that we don’t fall over).

Lately I’ve been more like a ‘Weeble - Wobble’. Remember those?
That succinct tag line:
“Weebles Wobble BUT they don’t fall down!”

Ok, Now I’m ‘dating myself in time’ and I can hear the echo of his (my friend’s) laughter just from me writing about Weeble Wobbles... 🤷🏻‍♀️ Oy.

With all the Chronic illnesses that have been w/me since birth + The Cancer I got through + the Cancer’s Aftermath and NOW new Neurology issues -(That list is long enough for this moment) -

Putting all that aside
I can only say: In MY personal experience- My 42 years of this crap-

I am used to being the one who survives in this Intoxicatingly Beautiful Tragic yet Wondrous Life.

I’m not complaining -ok maybe a lil bit- but it does beg the question: “Why me?”

Not exactly “Why is this happening to me?!” Although those days do happen. Y’all know! We all get them 🙃

Rather: “Why Me?”
As in “Why am I still here?”
Watching people who have had the same or similar experiences, illness or issues fade away. . . 🧚‍♂️
“Why am I still here?”
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#introduction
#CheckInWithMe #MightyTogether #CPTSD #SurvivorsGuilt #SexualViolenceSurvivors #IllnessAnxietyDisorder
#non-SmallCellLungCancer #MixedConnectiveTissueDiseaseMCTD #Migraines #Goodgrief #weebleswobble #Neuropathy #ImmuneDeficiency