Weather People are Imposters

Those people who stand before maps, pointing here and there, describing in phrases carefully learned in meteorology how 'this huge front is moving slowly, so by the time it reaches us, we'll be lucky to see a few sprinkles'. (Paraphrased since I am not a meteorologist)

Hubby says, 'Work tomorrow', while I'm gently shaking my head because the dizziness and exhaustion is telling me there's going to be a freaking deluge! 'Honey, better bring in the cows and batten the hatches because I'm telling you, this guy is off his rocker.' He laughed -surely because we have no cows, and there's not a single hatch to be found.

So this morning between the thunderclaps, the rain that sounded like a cow pissing on a flat rock, and a ringing in my ears that is so loud, I half expect the neighbor to send her kid over with ear plugs, I felt vindicated. DIZZY and vindicated. Being right isn't always all it's cracked up to be.

Nonetheless, I sit up on the side of my bed, take a few deeeep breaths and engage in 15 seconds of breathing meditation before getting up and making that 30' trek to the bathroom which is, in reality, only about 10' away. Vestibularly challenged people don't often take the shortest route between point A and B. We sort of ping off of the chair to the right, which sends them swaying over to bounce off the dresser on the left.... Think pinball.

It sounds bad, but really, it's like my very own Worlds of Fun ride. No lines, no waiting......and I always get to ride in the front!

Perspective and Focus

It occurred to me that it might be important to share that I can be a huge whiner. I recognized that in myself a few weeks ago (before the big garden-working day), and decided that I did not want to be that person.

Those things I write here are not always about things that come naturally. They are realized out of the necessity to find them, thanks to my commitment to write something positive, and life enriching every single day. This new outlook is a process, which involves breaking old and bad habits.  It takes work to not being the victim of one's own body.

I have intentionally placed myself  in a situation where I must find the joy, the peace, the lesson, my balance. And it is there, I assure you, even when my physical balance is challenged. And when it isn't, it is because I have become greedy, lazy, of overwhelmed, and have overlooked the fact that I have been given a whole new day - and that another whole, new day stands behind this one, waiting expectantly for me to search...and find the best of what it holds for me. And sometimes, it requires that I look at things differently.

DEFINE HEALING

I'm at the checkout with my newly prescribed meds for my nausea. I want little more than to get in my car, drive my happy butt home, and go to bed.
The woman there decides that while I'm writing out the check she should keep busy and wash her station which is off to my right. Spruurtspruurtspruurtcrinklecrinklecrinkle She moves her hand in short, circular motions.
"Ma'am, my name is MJ and I have an inner ear condition which makes me very dizzy. Would you mind stopping that just long enough for me to write me check?"
"Oh, absolutely."
She watched me closely then asked me, "Which ear?"
I just knew what was coming.
"May I", she asked as she reached out to place her hand on my left ear.
And before I knew it, this complete stranger was praying me healed. She never said anything out loud...she just did it. I appreciated the gesture and eventually placed my hand on hers.
"Thank-you."
"Do you believe yourself healed?"
"If by healed you mean I'm no longer dizzy, then no."
"Do you feel anything?"
"Yes...I do. I feel not alone, and cherished by a sister in Christ. Thank you for the blessing - it is a form of healing."
I don't say this lightly as, of late, I've been feeling a little peevish towards a large portion of those who call themselves 'Christian' but who display the very worst behaviors - not to mention that in a world where we're so 'trained' to flinch from a hand offered in friendship....or healing... Or a world where we're conditioned to mind our own P's and Q's...how could I not consider myself to to have been healed to some degree.
I smiled through the nausea and counted myself blessed.

My Battle of Mobile Bay!

Sing it with me:
The GP sent me to the Neuro,
The Neuro sent me to the Oto(laryngologist),
The Oto sent me to the Audio,
 And I'm still dizzy as a top!
 
Long story short, Oto misread Audio's report and wanted me to undergo a certain therapy that I am NOT a good candidate for, based on Audio's evaluation.

After informing the nurse, who was informing me, that the information she was givingme was incorrect, she skimmed through the notes and discovered I was correct. So she called me back yesterday to tell me that I was a poor candidate for Vestibular Rehab, and that I was to continue my current medications and call if my symptoms got worse. To what end?!

'Worse', it would seem, is subjective. After all, I went to them BECAUSE I was worse and while the migraine pain has abated, both the dizziness and strong ringing in my ears persist at this new, heightened level.

I processed this information for a bit. I felt like I'd been tossed in the middle of the ocean,and these doctors, nurses, tests, and symptoms - all torpedoes giving chase! They're everywhere - consuming our finances, my endurance, my well-being!

WHOA

I closed my eyes and took a deep breath, imagining it as a white mist, curling up through my sinuses and up the back of my skull, engulfing the red clouds of frustration. And with each exhalation, my mind began to clear.

I am currently raising our FOURTH teenager - a girl this time, who has been living a menses hell and does things like proclaim before God and everyone,that her uterus is takng over her entire life thus MUST be Republican.

My oldest son ELOPED, for God's sake! And sat in MY house for hours, talking about the plans they had for their upcoming wedding! And he lives today!

I wrung my hands while two of our sons served this counry overseas! And giggled at their first letters where they refer to me, not as mom, but mommy. ;) Boot camp is hell.

I raised diapered ducks, for crying out loud, and took them to nursing homes!

I have been married to the same man, rain or shine, for THIRTY years. 'Nuff said.

There is just too much good stuff....funny stuff.....interesting stuff in my life, to let the high-paid idiots use me as a shuttlecock in their game of badminton.

So....damn the torpedoes, baby, and full speed ahead!

Irreverent Humor

If you haven't caught it, I am a private patient advocate.  Not only do I take care of the daily tasks of bathing, giving meds, and other necessities, but I fight with insurance companies, insure proper staffing for my patient's hospital care (she's a full quad), doctor shop with her, and accompany her to all doctor visits.  And - on those days when it strikes both our fancies, we go shopping.

This story happened back in the day when she could still control her electric wheelchair. 

On this day, having just freed her from the van, she headed across the parking lot while I stowed the van's lift as per usual.  I byuped the locks, and headed after this friend of mine when I noticed her rolling herself in through the exit. 

Ordinarily, I'm not an evil person - but I AM certifiable! I decided to tap into my 'crazy' - and knowing Di, I knew it would give her a good chuckle.  SO, I began to run towards her and yelled, "HEY, LADY!  Just because you're handicapped doesn't give you the right to go in any door you want!!!"

As expected - Di about choked on her own spit, she was laughing so hard, and I had tears rolling down my leg (not really).  What I hadn't counted on were the customers who had sort of gathered there, by the greeter, with confused looks on their faces.  And off we went, still chuckling.

And THAT, my friends, is how you place joy above symptoms!

POWER OUT

So it's raining.  Hard.  Me, I'm minding my own business, fatigued beyond reason and a growing pain behind my eyes. By 9, I make decision to embrace my leg pillow and knock myself out.  Suddenly, I'm sitting upright, having heard what sounds like a car crashing into my garage....or a pipe-bomb blowing up my neighbor's house. It's 4am, and the thunderstorm rages on. Two seconds later, a CLUNK - and the power goes out.

My Vesties (dizzy friends) who also have tinnitus will understand when I say - total silence is like torture, which is ironic because too much sound is just as bad.  But when total silence exists, there's this evil little creature that resides in the folds of our brains, that makes it his business to turn up the volume of the infernal ringing.  One day, I'm going to have my Honey press his ear against mine and make him listen for it!

NO!  NO NO!  I lay back in my bed, eyes wide open and noticing little flickers of light - my little friends, the aura fairies, dancing to the now VERY audible ringing and rumbling in my ears.  It's a party I refuse to attend!!!

Being the reasonable person that I am,  I close my eyes, determined to go back to sleep.  

*ten minutes later*

Turns out, when there's no power, Honey's c-pap machine won't work, and he's sawing enough logs to build us a 4000sq ft log cabin.

Hey....not his fault, so I gently cover him with a sheet, grab my pillow and head out for the couch. 

God, how I love this furniture.  Couch, love seat, recliner - all 'leather'.   It's a beautiful set. Did I mention that when the power went out, so did the air-conditioning.  Humidity increased to  the point one can literally step outside and drink the air.  I'm tempted to march myself back into that bedroom and steal the sheet off my husband's back.  After all - it's hot, right?  

At any rate, I finally fall asleep, and even wake in time to head out to work.

***
Honey knows I probably didn't sleep well and wants to know how I feel...at 8:30 this morning.

It's a trick question.  If I tell him I feel bad, then he forbids me (Yeah...I KNOW) from doing anything, then has to do everything himself, which results in a very Roman Catholic sense of guilt.  So, no matter how I feel, I make myself function.  I make myself shower, get dressed, and I carefully choose my attitude and accompanying smile. Then, despite orders to give up coffee, I feel crappy enough I make that one cup of half-caff, and take it outside to my new garden spot and sit next to my fountain, eyes closed.  I don't even feel like I'm cheating.

I breathe deep.  I don't ask for relief, I expect it.  The air is still humid, but the clouds are still out and the breeze makes it all bearable.

I count my blessings:
My gardens
My cats, who clamor for my attention
My fountain, which works as a physical and mental soother
My friend - my patient, with whom I laugh...hard....almost every day.

Turn, Turn, Turn!

Let me tell you how things have worked for me since (dun-dun-duuuuuuuuh) The Big Attack!

First, I waited a week as this wasn't my first round with vertigo. baha!  When I realized I wasn't only NOT getting better, but now I was being visited by illuminated dandelion heads, and head pain the likes of which had me considering death as being an inviting fellow, I set an appointment with my GP.  My memory here is a little spotty, but when the nurse saw me walking, a term I use rather loosely, she took total leave of her mind and asked, 'Are you okay?' Worst migraine of my life, visual disturbances people pay for at concerts, and a great imitation of the town drunk as I leaned against walls to stop them from melting into the patterned carpets AND I'm seeing the doctor -  and this nurse wants to know if I'm okay.

"What did you say?" 

"Room 3." 

That's what I thought!  'Am I okay'?!

As is common in vestibular situations,  I have now embarked on the journey to meeting EVERY. MEDICAL. PROFESSIONAL. this side of the Mississippi. 

See the ENT, who refers me to the Audiologist, who refers me to a Neurologist, who refers me to  Diagnostic Imaging for an MRI, the findings of which lead to the Migraine Associated Vertigo diagnosis.   Among other things, my triggers (common in MAVers) are  patterns, fluorescent lights.

So get a load of this!  The hallway to my neuro's office. 

If I'm not exceptionally dizzy when I go in, by the time I leave, I'm popping Valiums like Tic-Tacs, and stuffing the suggestion box with necessarily unsigned notes.

***

Four years later, and in the space of 2 weeks, I've seen the GP, the Neuro, the ENT, and the Audiologist.  Weather fronts are moving through - and they're stronger than the new medication.  I'd call the doc.....but am wondering which one I'm supposed to call. 

Vertical Hold

In today's digital world, we hardly ever hear the term 'Vertical Hold'.  Back in the :mumblemuble: (years), it came in the form of a tiny dial designed to help control the vertical stabilization of the picture.  Without it, you were doomed to watch the picture slide up - over and over and over again. Arbitrarily, you would sometimes find yourself watching a bifurcated screen, bottom half resting over the upper.

This world of mine, which is prone to rocking from side to side, forward and/or back - I think back to those days and realize two things: A) I am clearly not digital and B) My dials done fell off and as with most relics, are impossible to find and replace.  Well, crap.

***
I am just now coming off of 18 days of steroids and putting on a good 12 lbs because of it.  Meh!  It'll come off again.  Meanwhile, I consider that, for the time being, my new-found posterior may well serve as ballast and keep me grounded.  Yeah...except for the fact that the world continues to be a ship's deck, and in the grand scheme, what weight I'm carrying is but a drop in the ocean!  The world itself, cares not.

Thank God that as a woman who has struggled with weight for most of my life, I have picked up a few tips along the way.  For example - a woman who is 5'2" and weighs 150lbs is considered to be obese.  Throw on a pair of 4" heels, she becomes that 'curvaceous' 5'6" woman.  So - in order to make the move from 'morbidly obese' to 'JUST obese', I figure 6" oughta do me.  I dare to dream!  As it stands....or leans, as it were - slipping into my 3" sandals requires the use of two hands against a solid wall, a focal point, and a few, whispered, 'Oh God, oh God's.  Just because I'm dizzy doesn't mean I still don't entertain my vanities, though. For the sake of some height and the illusion of fashion sense, I will gladly walk with my palm firmly places against a wall. 

***
A bit of serenity this morning.

A new morning ritual is to take a quiet walk through my gardens, armed with my camera, and take snapshots of those things that catch my eye.  This morning, I realized just how many things in this life exist in a spiraled plane. This is the first time I 'caught' a hibiscus, mid-unfurling.

And the morning glory, with it's spoked center which hints at a spin.

And for no reason other than I love my cats, here is Minette and Marvin.

VAGINA!

If they can't touch it, see it, or explain your symptoms, and you just happen to have a vagina - chances are the very first diagnosis you can expect is 'anxiety disorder', 'early menopause', or 'depression'.  It was true for me back in my 20's when vestibular issues took over my life and it became unreasonable to entertain the notion that I had suffered nearly a dozen cases of labyrinthitis in 6 months.  Finally, the GP decided that perhaps this was hormone related, and sent me to a gynecologist. I was on my way to a firm VAGINA diagnosis.

A quick trip to the paper-lined table, heels tucked into the stirrups, the doctor did his thing, hmmm'd and aaaaah'd, ripped off his gloves and declared that I must be suffering from depressive disorder based on the fact that I was anxious about always being dizzy.  

Back then, I was easily intimidated by white coats - and I took him at his word. My exact thoughts were, on my way home, "Oh my God, I've lost my mind! Whatever will I do?!"  I found myself a counselor who was glad to speak with me at length about my life, my views about this and that, and my dizziness.  Determining that I was not suffering from any form of depression or anxiety, the counselor suggested that GYNs should stick to what they know best, and leave the 'shrinking' to the professionals.

Thirty years and many support boards later, I have yet to meet the man who has been told that his symptoms were clearly related to the state of his penis.  Oh, relax!  I'm just saying!!

This being said - I have overcome my reverence of doctors, realizing that they are human and make judgements based on their life experiences and prejudices just like the next guy.  I have also learned that the very best advocate for my health care is....me.
***
Long past the VAGINA diagnosis, I recently met with a new audiologist who ran a wiiiide range of tests.  The goal, this time, was to make a decision for or against Meniere's Disease.  The good news is they are confident that we can rule out yet another vestibular disease with a really crappy prognosis.  More good news is that all of my ear parts are functioning with the exception of some vestibular weakness in my left ear, and some issue that could explain the hyperacusis (sensitivity to sound) that is causing dizziness.  A CT scan is in my future.

This is when Ear Doc stepped in and whisked me off to another room to check my gaze stability and perform a Romberg test.  The first, I failed with flying colors. Failed badly enough, I just had to laugh.  When I was finally able to focus enough to indicate a correct response, the doc laughed and said, 'Congrats!You just noticed the oncoming semi!' to which I replied, "YEAH, BABY! I SUCK!!!"

And had I been at a sobriety check point, I would have Romberged myself right into an overnight stay in a drunk tank. 


So basically, all the little bones and hairs are transmitting all the information to Brain, and Brain, who has apparently taken up another language, takes one look at it all and says, with a very heavy, French accent, "Feuk yew, Madame - hew ahr on hewr own!"

***
Husbands...ah, I mustn't forget...

I came home and began to explain that the tests showed the parts all worked, but before I could tell him that there's a glitch in the transference of information, he said, "So...it's psychological..."

The doctor says his leg isn't broken - and that the concussion was mild.

REPRIEVE!

 I am a garden person. 

This is not to say that I have Homes & Gardens scenery around my house, but I do love to dabble in landscaping, and creating little oasis' here and there. Almost everything I do is with reclaimed materials, and have an 'in nature' feel.

It goes without saying that with Migraine disorder (MAV dx), and with triggers like heat, humidity, and weather fronts - not much has been happening in the way of gardening. Until this month. And now, this week, the blessing of cool, dry weather - with gentle breezes. I should also mention that I am on new medication to control migraine and still on steroids to help break this MD attack. The 2.5 Valium every 6 hours has also been working to knock the chip off the whirly-bird's shoulder, too. The combination has brought about TWO, back-to-back, almost symptom-free days. Hallelujah!

The new area I'm working on is HUGE.  It required almost 3 dozen bags of mulch!  

I spent several hours planting Purple Fountain Grass, installing a little slate fountain, planting moon flowers, peppermint, and some sort of flower my husband brought home from a job site he had to flatten. Knowing I would never let him live it down if ever heard of him just burying such treasures, he felt compelled to bring some home, securing his place as husband of the year.

How I worked...and sweat...and smiled...and sang. I took frequent breaks, drank gallons of water - and relaxed as I worked. It was awesome!

After all was said and done, I drew a bath of tepid water, peeled off the muddy, blackened clothing, and slipped myself beneath the bubbles. Only then did the world begin to truly wiggle and shake, but my day had taken me through that gateway of bliss. What counted most lay beyond the physical.

Yesterday was medicine. Yesterday, the sun kissed my brow, as I sunk my fingers into the rich and fragrant earth. Yesterday, I created to my heart's content. I was, as far as anyone could tell, healed beyond my dizziness. I was rescued beyond my migraines. My very spirit was caressed- and I cried for a good while in relief, surrounded by my bubbles. Delivered, if even for just a handful of hours, and in this new place that I will forever associate with this precious reprieve - My refuge...my garden.

An audiologist friend recently cautioned me, "Do not allow what you cannot do to interfere with what you can do." That had been on a bad, bad day, so I know how facile that sounds. From where I am at this precise moment, however, I am understanding this to mean that it is imperative to reach beyond my symptoms, and grab hold of whatever brings me joy. Seize that instant and hold it up above all the rest, and celebrate that puppy as if it represents my very life breath.

#migraine associated vertigo

Sporks.....

There's a purpose for this blog.  As a matter of fact, I had my opening all prepared.  I was ready to go -ask anyone!  And yet, here I sit with my mental wheels spinning in gray matter.  It's all part of what I deal with.  I have Migraine Associated Vertigo.  Laymen's explanation is that while most people get debilitating pain with their migraines, *I* get to experience dizziness, or true vertigo right along with it. That's right - I'm a dizzy brunette.  When *I* say I'm drunk on life, it's not just a figure of speech. 

Unfortunately, these migraines have led to some vestibular loss, which means that there is always some level of unsteadiness.  The forgetfulness, well....that's all part and parcel.  My body is so busy doing the work of translating visual and postural information into something my brain can make sense of, that those things that aren't quite so important as, say, my middle name or my street address, are only accessible through some Herculean mental savagery.
An example of how it often comes off: "Of course, Mrs. G.  What is your daughter's date of birth?"
"Okay - give me a second!  I know this one!"

***
The purpose of this blog.  Right.
Look -let's face it.  This shit can get pretty depressing pretty fast.  I don't have time for that.  I am 50 years young, and am only a few years away from having my husband of 30 years all to myself, and a paid off home.  THIS is where life begins, dammit!
So, my strategy is to spin joy out of the tonnage of straw that make up the symptoms of vestibular migraine. 

Because I have too many opportunities to complain, this place is being reserved as a sort of snapshot album of my successes, stolen moments of joy, and laughter. Personal peace and balance despite Migraine Associated Vertigo.

So, enjoy it, dammit! 

#migraine associated vertigo