Dear onabotulinumtoxinA, I really miss you

It’s been some seven months or so since we last, well, hooked- up. You, me, Doc M., the hospital. It was, well, magical! I know you felt it too. You, so helpful, so giving. I miss your touch. That extraordinary effect you have over me.

For those of you not in the know, I’m talking about Botox. Not the ‘wrinkle-relaxer’ to iron-out the multitude of well-earned, effin’ lines that surround my mouth and eyes kind of Botox. Oh no, I’m speaking of the genius who figured out that if you inject actual botulism, a poison, strategically and methodically into the muscles of people like me who suffer chronic pain (cervical dystonia, and occipital neuralgia), it will deaden the pain. Deaden the pain. Three such beautiful words.

May you never experience such pain and troubles. Ir zolt mir nit visn fun ken tzar un tsuris.

Botox, you quiet my nerve signals, as they are effed up not so hotsy-totsy. When they are screaming to my brain, “OUCH, spasm, contract, OUCH,” your prickly approach allows my body to function, to feel like me. With you, I like me. Without you in my life, the pain gets so unbearable, that the contents of my body empty completely.  Yes, both north and south partner up on this exercise in exhaustive depletion. This, in turn, causes dehydration, additional spasms, contractions, and OUCHES! Not the big-O I am seeking.

onabotulinumtoxinA, Botox, your injectables, make me closer to fine. You complete me. The biggest problem in our relationship — what most people fight over, gelt (money). The dreaded pharma co-pay. You see, your precious vials, while worth every cent my love, cost $1200. Since insurance makes us ‘go dutch,’ our chance encounters run $600 USD.  Together, we need Dr. M. and his wise, slow hands. The best neurologist a tier 3 kind of practice according to insurance, even though he is in my effing network in the city of brotherly love unites us. The ambiance of our darkened medical suite, the cost of the tincture, the scent of the isopropyl alcohol — can you hear the clamorous Ka-ching that distances us?

Don’t worry about it! Zok nit kin vey!

This is how my Mrs. and me, we approached this dilemma for the first nine months. Feel better. Life will be good. Until those credit card bills come thudding through the post. You or groceries, school, rent, life. It’s too expensive to exist. That puts our union, our relationship, in the varbotn (forbidden) category. This is not the frugalista, Yiddisheh momma speaking. This is a true pharmaceutical reality that divides our picture-perfect match. We are no better than the Montagues and the Capulets. A star-crossed pair. A schadchen (marriage broker) couldn’t make me a better match, find me a better find.

So, my dear Allergan, this is an open plea for help. You, your Botox! It works, I am your advocate! Your ambassador. A walking, talking example of Botox in action when I am lucky enough to be under your spell. Help me help you to help me feel better. I can be a better mama, a better spouse, a better worker, a better activist, a better all around human being on the planet. Your unique power to deaden the pain in quarterly injectable, installments, is no less than miraculous. No heavy opioid side effects. Instant ability to operate heavy machinery and make important life decisions. With you by my side, the pain, she is very manageable. Sleep is greatly improved. Appetite is back. Together with my occipital stimulator,  I can almost consider myself to be, dare I even say it,  N – O- R – M – A – L. 

Allergan, Botox, Dr. M., hospital. Until we all meet again. There is no shame here. Only love.

“Good night, good night! parting is such sweet sorrow, That I shall say good night till it be morrow.”   William Shakespear, Romeo and Juliet

Zie gezunt. Be healthy. Be well. 

 

     

      

      

Swimming Upstream

always upstream, oy vey
Always upstream, oy vey iz mir

It’s been a fucking lifetime few weeks now of life as a salmon, swimming against the tide of bureaucratic bullshit on numerous life levels. Paperwork perdition. Righting wrongs, with only a small success to keep my spirit motivated. I fear losing some of my much called upon ‘glass half-full’ skills. I’ve been a salmon so long now, I cannot even appreciate a nice nosh (snack) of lox and bagels with a shmear…Oy vey iz mir.

  • IRS: the Mrs., and me, we filed our 2015 tax return in February of 2016. Twenty-one days is what the website said. I’ve always been an early filer. I pay what we owe and I look forward to our return. Never have we as a family been so in need of said gelt (money) from the return than this year. Please understand, as of this writing, it is now mid-September of 2016. That’s 21 days plus almost 7 months, and still going. Talk about red tape! I’ve spoken to my accountant more times than both he and I care for… Maybe he even blocked my number by now. I’ve gone many a day to irs.gov, clicked on ‘Find my refund’ (the fact that they have that as a button option, I’m just sayin’) and get the same message every time: Your tax return has not yet been processed. I called the IRS back in March of this year and found a live person, who was kind and apologetic. I let him know my story and he searched high and low, keeping me on the phone for almost 3 hours. He found out that my return was placed in some holding purgatory for those who have had experienced identity theft!

My heart pounded, “What, someone stole my identity and has my return?” “No, it was just a random pull”, he replied. “Let me see what I can do to get this processed for you”. I took his name and badge number and felt we were on our way. He said, “Call, and just ask for me by my badge number.”

That was March. Now, I dial the many IRS numbers I have amassed, and get 85+ different prompts, all of which I have tried, and none of which lead me to an actual live person. I fear for my badge-numbered friend. I go through the ‘find the status of my refund’ prompt, and nu, I get: Your tax return has not yet been processed. I called the phone number of the local IRS department, and I got a recording saying, ‘This phone number does not offer phone support.What the fuck! I even tried the phone number for the hearing impaired. After all, even the IRS would be nice to the hearing impaired, right? Not so much. When the machine picked up, it let out a blaring sound, like a ship at sea (warning poor schlemeils (fools) like me, mere salmon still going upstream) to move aside. My right ear, it still rings. And yes, dejectedly, I am still swimming.

photo by @willowandsage1 follow on instagram
photo by @willowandsage1 follow her on instagram (the Mrs.)
  • Botox: As many of you know, I get Botox injections (no, my face is like a google map!) to assist in chronic neck/head pain, cervical dystonia, etc. Due to the cost prohibitive nature of this treatment, Allergan, the company that makes the injections of botulism that relieve the pain to passable life levels, offers a subsidy for those who are green-gelt impaired. An incorrect diagnosis code has bolloxed my Botox, leaving my pain plan in a perpetual place of purgatory, like the above referenced tax return gelt (loot). I call, I write, I beg, and I remain without treatment. No one should know of such pain. If you want to click here or here, you can learn more about how wonderful Botox is for my chronic pain.
Getting un-towed, not so easy
Getting un-towed, not so easy
  • The Car Tow: So as not to be deemed a total whiner, let me tell you now, this one ends with a Mitzvah (in a win, a good deed)! My Mrs., she had a lovely day at the shore with friends right at the end of the summer. She left early to get there and got home late in the evening, making memories of fun and laughter with good friends, Little and Big. She arrived back at the Manor and there was not one parking space available. In fact people were parked sideways, on the grass, and in the fire lanes. Half asleep, I grumbled, “Leave the car in the stairway spot. There are no signs saying ‘no parking’ and you can move it in the morning.” She awoke to a car towed and the start of a fight with the 4th management company to take charge here at the Manor since our sojourn began. We talked to Katrina, the new manager. She could give two shits about us or our car. We begged for her to get the car released as she did for two other families before us.  I contacted Katrina’s boss. No response. Our car was gone, and we needed $200 to free it from this unfortunate and unnecessary incarceration. This timing, it was not so good for us in the gelt department. The next week, we searched under sofa cushions and on the floors of our cars to scrape by — no joke. The fight, it continued. Went on for weeks. The neighbors, they all complained. We did not relent, and we finally got word, today, that we will be credited $200 towards next month’s rent. Azoy! (Huzzah!)

There’s more, but this seems like just enough. End on a good note.

Tsum shtain zol men klogen nor nit bei zikh zol men trogen. Better pour out your troubles to a stone, but don’t carry them within yourself. So, I’m pouring. Thanks for reading! 

Wishing you all a tsuris (trouble) free time. A bei gezunt (Be in good health).

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*Botox Brief: No more smiles for me, and it is Awesome!

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I cannot smile since this Sunday past

My only hope? This result will continue to last

When I look in the mirror it’s absurd, quite inane

That my lips can’t curl up, they will only abstain

 

I did not smile when I arose before sunrise

Not in the kitchen with coffee; these lips still were lengthwise

I simply do not look that amused at all

Not in the Manor, nor down the hall

 

I will not grin while commuting each and every day

Not a beam or a chortle when I look your way

I will not smile while I am doing my work

Signing the big deal, there’ll be no sign of a smirk

 

This flytrap of mine won’t turn its way ‘round

I’ll look much more serious, even a tad bit profound

When I leave in mid-day for a lunchtime siesta

My lips won’t crack upwards, yet it’s a real mitzvah (good thing)

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Shuttling back to the Manor before turn of night

My mouth doesn’t snicker, at all, in delight

When I swoop in to hug my Big and my Little,

You’d think my facemask was looking a wee bit too brittle

 

The Mrs., I’ll give her a peck on the cheek

Ask about her day, my grin passed its peak

As he dances and barks, Gatsby’s wagging his tail

I’ll bend down and squeeze him, my punim (face) in jail

 

But don’t you have shpilkas (worry) about my lost grin

The Botox, it’s working; chronic pain must not win

Losing my smile is not at all saddening

Life filled with pain; that is what’s maddening

 

So if you should see me and think it quite odd

Just know in your heart, I feel better in my bod

The pain in my neck that reaches a thunderous level

Has temporarily been frozen, this poison’s no devil

 

Botulinum toxins injected into my skull

Has diminished the pain, left me much more agile

My mishpocheh (family) is kvelling (happy) with my newfound freedom

Just know that inside, I’m grinning eardrum to eardrum

 

*Cervical dystonia, occipital neuralgia, neck and back spasms, chronic migraine, pain in the effin’ neck, and associated awful side effects

 

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Botox Day: A Story in Pictures at the Hospital / Shmospital

Back, at last...
Back, at last…my glass is half full
Oy vey. This I have to wear?
Oy vey. This I have to wear?
Hospital, shmospital
Hospital, shmospital
Over here Doc. I'm here. It's me! C'mon.
Over here Doc. I’m here. It’s me! C’mon.
Doc is asking for me!
I heard my name. YES!
Ready, set, go
Ready, set, go
In 3 - 5 days I'll be better...
In 3 – 5 days I’ll be better…
This morning, waiting for the Botox to kick in
This morning, waiting for the Botox to kick in

Coming soon: a better parent, wife, sister, friend…

 

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The Good, the bad and the ugly truth: My Smile is Back

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photo by @willowandsage1.  Follow on instagram

Shhhh. I’m kvetching (ranting). It’s Friday.

Good News: My effervescent (not in a gassy way), cheerful, and sunny disposition has been fully restored to my punim (face) as I recently regained the use of my right trigeminal nerve. Yes, I’m a regular Mary Poppins-berg! In short, I’m able to smile, beam, and grin again like the Cheshire cat.

Bad News: Since March, my punim (face) has been fahrkrimpteh (twisted, scowling). My ability to fully smile, while usually a wonderful and somewhat contagious activity, means that the Botox treatment used to treat the nerve pain I experience from occipital neuralgia and cervical dystonia has completely worn off, shy of the 90 day term. Stop what you’re thinking. It’s not ‘that kind of Botox treatment.’ While I have the shoulders, back of my neck and scalp of a 21-year-old female, this punim (face) wears the aged mask of an alta kocker (old fart) from years of living in chronic pain.

The Ugly Truth: Chronic, persistent, prolonged pain sucks ducks. The walking wounded, we amble among you. We are everywhere. We may look just fine, and we are faking feeling great. Botox, actual botulism in a bottle, when administered by the proper neurologist, beautifully battles the suffering. When combined with bionics and meds, I’m the closest to normal I’ve been in decades. A bei gezunt (We should all live and be well)!

Good News: I am 13 12 days until my next treatment. That’s nothing! My cranium will regain its youthful glow as the surrounding nerves freeze and ease, like Elsa in Arendelle. I don’t mind needles or shots. I’m gonna “Let it go.”

Bad News: I am 13 12 days until my next treatment. Depending on how things go with the turbulent barometric pressure, stress, physical activity, posture, and luck of the draw, we’ll see how I feel day to day. How much can I fake it, and how I can avoid impending flares?

The Ugly Truth: This last round was wonderful! I had one or two days at a time when I totally turned off the bionics (occipital stimulator). On the classic pain scale where I (new-normally) live a persistent 6-7, I saw days in this past couple of months where I was a 2. Nu? Me and the Mrs., we were afraid to talk about it…I am amazed that some gantseh macher (big shot, genius) had the gumption to inject this enchanted neurotoxin to freeze nerve endings and reduce wrinkles. Who am I to judge that this mastermind’s first intention was to use his goldeneh hendts (golden hands) to fulfill the vanity needs of aging starlets? En route, there was a common oddity found among those firmer in the face. These maturing movie stars also saw benefits of less head and neck pain? Ah-hah moment!

Good News: Armed with the trifecta of Botox, meds and my stim, I get more days on my calendar than, well ever before. I have more time with the Mrs., Little and Big, more days for work, more days for play. Priceless.

Bad News: In terms of costs, Priceless, not so much. In fact, “OUCH!” This family will feel the pain in an already vulnerable wallet. There is no frugality in Pharma. They expect a lot of gelt (money). What price pain? This round, we will see how my new friends at Allergan pitch in to help.

The Ugly Truth: Soon, when I lose my smile, know how happy I really am. Pain, gay avek (go away) Neuro-paralysis, here I come.

 

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Today’s Post, is brought to you by the Letter “U”

With the doctor
With the doctor

Big U, Little u, what begins with U?

U is for Update

So the last time a letter sponsored this yiddisher momma, it was B, for Botox. I thought it well timed to share an update. It’s unanimous! There is no level of unhappiness as a result of this treatment. In fact, it is my understanding that in addition to the incredibly youthful, even child-like, back of my head and scalp that I now sport underneath my coif, Botox helps to undo my pain! In fact, Botox, united with my superhuman bionic occipital stimulator, has me under an umbrella of predominantly good feeling unlike I have known in quite some time. This unusual turn of events has me quite hopeful and, well upbeat. The upstairs region of my person, which is usually inundated with pain unlike – well, you should just never know from such ugly pain – now has me in the unique position of not crying, “Uncle! I give up.” 

Big U, Little u, what begins with U?

U is for Unlikely turn of events

It turns out, you do not have to be ungeshtupped (stuffed with money!) to get this procedure! The upright people who make Botox (Allergan) have a program to assist desperate pain sufferers such as me, in paying for the unreasonable and unwarranted copays that triggered consideration of sitting myself near my local urban pharmacy with a Venti-sized spent Starbucks cup in hand. I am still anticipating the arrival of my undue out-of-pocket expenditures, and will no doubt update you all to the Botox loot when it arrives via post. The understanding of said payback program has me already scheduled to undergo another round of injections in one month’s time. Sticking to the 90-day plan is urgent and essential in keeping away the unpleasant pain.

Doing the 'HAPPY DANCE'
Doing the ‘HAPPY DANCE’ for Mommy

Big U, Little u, what begins with U?

U is for Us

As in the Mrs., me and the kinder (kids) and our newfound universe that does not contain the usual amount of ache and discomfort. This has us all on an upward spiral of delight. And, don’t you worry, I will undertake anything that I am normally unable to do – I want very much to maintain this unique new feeling of unfeeling as much agony as is possible.

Until next time…what’s new with U?

 

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Today’s blog is brought to you by the letter B!

The Buss, photo credit willowandsage1 (the Mrs.)
The Buss, photo credit willowandsage1 (the Mrs.) 

Big B, Little b, what begins with B?

Botox begins with B

Also known as Botulism toxin or BTX. And for this Botox we are not talking about leveling out the creases, crinkles and wrinkles that now beautify my pain strained face. Nope. This Botox will be injected into the back of my neck and all over my scalp to plainly paralyze the pain. In return, I will also sport the back head and cranium of an 18 year-old. The goal of injecting botulism is to aid and abet my bionics in controlling the incredulous chronic discomfort caused by occipital neuralgia, cervical dystonia, bruxism and the other dreck (crap) that can basically be defined as a PAIN IN MY NECK.

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Bionics begins with B

Bionics as in the little machine installed just above my right tuchas (butt) cheek. Its wires wend their way up to the occipital borough of my neck where the magical leads are proficiently positioned. Bionics, from Boston Scientific, alters my brain waves to say, “Hey, that doesn’t hurt so much, ya know?” Bionics are a game changer.

Big Pharma begins with B

Big Pharma is akin to the prescription drug biz that makes medications like Botox. These meds cost big bucks, despite having Blue Cross Blue Shield. What’s an exorbitant bill? When your co-pay is similar to your take home pay.

Boychiks (two young lads) begins with B

Boychiks, as in my two neurological besties, who continue to offer benefits like both Botox and Bionics. These medical miracle makers, yes, they’re doctors, give me hope for better days ahead.image

 Bubelah’s (the affectionate way of referring to my girls) begins with B

My bubelah’s, der kinder (the kids), my shana madelahs (pretty little girls) and of course, the Mrs., they bring me such joy each day—well, basically each and every day! They are hope and my daily simcha (joyous occasion). 

Buds begin with B

Buds are the hope that comes with spring, and quite frankly things like Botox and Bionics. Buds make me beam and believe in warmer clime and sunnier times.

 

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Blogging begins with B

Blogging makes me happy.  Blogging makes me blissful. It gives me a healthy outlet to vent, share and kvell (boast), and allows me entrée to you, my therapists. Blogging is cathartic and liberating. Hopefully, it somehow touches you in a beneficial way, or at least makes you beam or chortle a bissel (little).


A bei gezunt (As long as you are healthy.).
 Well, it almost begins with B.  Nu?

 

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