Wedding Bells and Pain..

Image result for wedding cartoon

I haven’t blogged in a long, long time, forgetting as I joyfully type what a good outlet it is for me.  Particularly blogging anonymously – just “putting it all out there to you, online universe whom I do not know.”

So, since my last post, Donald Trump is president.  That’s fun.  I lost a job and got engaged on the same day.  I was on unemployment for awhile.  That was new.  I passed my LCSW!  (Police should escort those who pass this exam home, as I was so happy I have no recollection of driving home after passing by a mere 7 points).   I gained a better job.  Then I somehow, with my fiance, planned and executed a wedding with a backyard reception, and did a great job, to our honest surprise! I ate lettuce for a month to fit into my dress, then gorged on as much buttercream frosting I could get my hands on (and we had  🙂

Amazing feats for a woman who, 5 years ago, at 9:30 a.m. was simultaneously telling myself I’d never drink again and planning my next drink.  It’s all pretty amazing.

Then came the pain.  My first week of marriage was riddled with my being face down with trigeminal neuralgia pain, it took over the complete left side of my head.  WHY God WHYYY????  I’m not on many meds, and the weather did change a lot that week, but I’m tired of being a fucking barometer!  Really.  So that whole “for better, for worse” got a kick start on that “for worse” part.

Back to that “for better, for worse.”  My husband is a wonderful caretaker.  He’s such a sweet person, really.  Not a bad bone in his body.  But I’ve been in this social work business long enough  to know that the divorce rates for caretakers/sick folks is high.  And I hate that.  I also hate that I can’t always give my “for better” self.  I hate trying a med and being elated it works….for 2 weeks.  I never thought I’d let someone operate on my brain again, but I’m game now!  If anyone can figure this out, alleviate my pain, etc. I’d be really happy!  My ‘dream honeymoon in the Azores’ in September may turn into a mini-honeymoon in Michigan, as there is a doctor there who thinks he can help.  But I’ve also been in the neurosurgeon world long enough to have doubts.  Hope has been hard. Worrying about divorce rates has been hard.  I know, I know, one day at a time.

My husband says “sweetie, if we go to Michigan and get your pain straight, it would be the best honeymoon ever.”  He’s a keeper.  I just hope, if I have a world of pain for the rest of my life, that he keeps me…

So, play on, Mr. Trump.  Build a wall.  It’s not like we all need to focus on advances in medicine and better insurance or anything…..


Cocktails of pills in lieu of surgeries, what to do, what to do?

Organize the above picture, and that’s what my pill planner looks like.  I feel as though my kidneys and liver might give out due to polypharmacy at the ‘tender’age of 50.  Really.

In the midst of searching for a possible procedure to help with my trigeminal neuralgia pain (One doc says “Go to Pittsburgh!  That’s where the specialists are!”  Another, “Well you can’t have that procedure, you had radiation 8 years ago, it won’t work.”  (Things we didn’t know about 9 years ago, but what are ya gonna do?!?!?)  My first surgeon has been such an asshole about it, I realized, I don’t think he wants to claim that these terrible side effects were the result of “His” surgery!!  Egos aside and put your big boy pants on, please!  Sheesh!  At any rate, it’s all stressing me out to no end.  Add a job that’s not the most helpful, short-term disability that’s up in the air, a timeframe that is unknown, lack of support due to a rare condition….argh!  Once again, it is amazing I have not taken a drink in 3.5 years.

However, one thing I have learned about blogging, and I’m only a few weeks in, is it brings some of you out of the woodwork for me!  And I thank you for that!  People who have chronic pain, addiction, mental illness, people who can laugh at parts of their conditions, at times people who can give me that support, a laugh, and best of all, resources.  Blogging is kind of like a big AA meeting – there are so many people out there, some bedridden, who are able to put a little bit of hope in  others’ days.  It’s nice, so thanks!

So back to these pills.  My psychiatrist recently found a combination THAT WORKS (touch wood, it’s been 3 days)!  Eureka!  This will tide me over until I know what I’m doing, and I’m quite content with that.  BUT.  The initial side effects.  Neurontin combined with Tegretol.  I work with seriously mentally ill clients, and THEY were asking what was wrong yesterday. (My favorite: “Uh, Lori, I had to switch my antidepressant from morning to night, and made me feel weird, and I’m just wondering if you’re going through something like that with a medicine of something?”  So intuitive!”)  I’m feeling drugged, slurred, slowed down, my cognition isn’t quite there, and my vision is blurry unless I wear reading glasses.  I’m really hoping I get used to these, this morning is better, but man.  It’s not fun at all.  Brian (the boyfriend) said I fell asleep biting halfway into a Samoa Girl Scout Cookie Wednesday, and those are gold, so…….

I hope if I ever get any other serious ailment it’s just not RARE.  Give me something run of the mill.  As terrible as it is to say…give me a melanoma on my skin….or….dementia once they work that cure out they just did in New Zealand (read your Newsweek).

In the meantime, I guess God realized I missed cocktails being sober, so I’ll continue to take my cocktails of pills.  I am jumping for joy the latest concoction WORKS and just hope it continues….

“Dance! Boogie Sober-Land!”


Image result for boogie wonderland


First and foremost, R.I.P., Maurice White…for I can dance to you in rare alone, housecleaning, cooking, getting ready for dates, and music therapy moments.

I went on a ski trip last weekend with a rambunctious crowd.  I knew from going last year that one night would be a ‘party and dance your ass off night.’  One that involved copious amounts of alcohol (and copious amounts of hangovers, hahaha). Now, I am sober, and can I just say, since getting so, dancing is hard!  I used to LOVE to boogie, back my ass up, get down, get it girl, drop it like it’s hot, you name it.

So, the party is in full force, and we had an array of partiers.  (I’m using different names here).  Natalie decided it was time to not only back her ass up, but circle that ass like a ferris wheel on speed, Julie was waving her Farrah Fawcett hair back into some breeze (where was the fan….and….why?),  as well as dancing like a sexy horse/unicorn, if that’s possible.  I’ll just say the men enjoyed it.  The MEN:  I’m not sure what any of them were doing.  Men seem to think they know what they’re doing on the dance floor with alcohol in them, ever notice that?  I’m fairly certain I danced with my boyfriend 80’s style to “Baby Got Back.”

Now let’s get to that part.  I danced.  Dancing is HARD when you’re SOBER!!!!  Ya know?  It takes a group of people you’re comfortable/don’t care/won’t ever see again/are extremely persuasive in letting you’re freak flag fly/are as weird as you to “boogie soberland.”  I’m serious.  So with this group,  I quickly realized they all fell into one of these categories, and soon I was letting my freak flag fly and it was lovely.  When a sober person dances and has a genuine smile on his/her face it’s special (unless you’re a completely uninhibited sober person, like my friend Matt, in which case, nevermind)….and we also don’t wake with that nasty hangover.  😉


The Joy of Capsaicin..

God bless these people:

Cayenne Pepper Lozenges Sugar Free Capsaicin

Cayenne Pepper Candy

$9.95 lb.

Also known as capsaicin candy. These sugar-free lozenges have been known to relieve people of jaw pain often associated with TMJ or other mouth pain.  Although there is no medically proven benefit, many customers have bought these for years and say they temporarily relieve pain. Approx. 100 pcs per pound.



SINCE 1935


Route 20, Guilderland, New York 12009

I don’t know where Guilderland, NY is.  Nor do I know how this small company managed to be the ONLY one online I could find that offered immediate relief this week, but I’m giving credit where credit is due. At this point in my day, I would walk there and hand-deliver a ‘Thank You’ card, if it wasn’t bitterly cold outside. (Holy crap it’s cold!)  There is something to be said for “grandma’s home remedies”. I’ve learned that living in the South as well (did you know tobacco from a cigarette can instantly soothe bee stings?  Truth.) While I have some leads on some potentially good specialists out there who can assist me with my trigeminal neuralgia, possible procedures, etc., it is disheartening that I may have to visit places such as out-of-states/Johns Hopkins/the like. I really wanted to take vacations this year, not have medical procedures. And even worse, that  slow, stop and go pace required in today’s medical world.  Hurry up and wait.  Hurry up and wait.  It’s the nature of the beast, but that doesn’t mean it doesn’t SUCK.

This morning I reached an all time low (or should I say high, in terms of pain level).  Isn’t it amazing where your mind goes when in acute pain?  My pain is sort of like this fire that’s always burning.  Occasionally someone uses a poker and shifts the coals around, or maybe adds another log.  Usually is doesn’t get bad until the sun goes down, but today?  9:30 a.m., and the fire was burnin’.  Some little devil decided to POKE, POKE, POKE and in all but minutes I became a raging, fire-breathing bitch.

So, all I had were these 2 lbs of candy I ordered on a whim this week after seeing an outdated site from 2001 which said capsaicin candy can help with mouth pain.  I think the theory here is that given another distraction like capsaicin, it’s actually relieving the other strong pain.  For once, fighting fire with fire seems to be a smart idea.  Well, way to go, grandma!!

So, thank you, Candy Kraft.  You’ve got my nose fiercely running like a faucet, but the lozenges are tucked under my tongue and providing relief, albeit temporary, for right now.  Keep making these goodies for the small percentage who find your site out of sheer pain!

I can’t guarantee I’ll feel this way in an hour, but this reprieve is what I needed right now, and for now, that’s all I have (sniffle, sniffle).

Trigeminal what?


Seriously.   As if a brain tumor and THAT aftermath wasn’t enough (see blog “Lots of Pillows”).  Now, 8 years later, there is more going on that is so ridiculous I need to write at least one entry about.  So much more.  And I’m tired of it.  This is sort of how I feel (see my friend Stabby the Unicorn above).

Have you ever had a procedure, and really weren’t properly warned of the ‘possible side effects’?  One in which you just have to outweigh the goods vs. the bads and see what happens?  See, I wasn’t really given a choice.  I had a tangerine-sized tumor pressing on my brain stem which required surgery immediately.  Like, “If you rode a roller coaster, your brain stem could’ve snapped” immediately.  So, of course I understand fully why something such as my aftermath occurred.  Sometimes, we aren’t given a choice.  I’d imagine this is true of so many situations; cancer, the many serious illnesses in our baffling world, etc.  I empathize.  But other times, I want to throw in the towel.

Let me define my condition: Trigeminal Neuralgia , is a chronic pain condition that affects the trigeminal or 5th cranial nerve, one of the most widely distributed nerves in the head. TN is a form of neuropathic pain (pain associated with nerve injury or nerve lesion.) The typical or “classic” form of the disorder (called “Type 1” or TN1) causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode.  These attacks can occur in quick succession, in volleys lasting as long as two hours.  The “atypical” form of the disorder (called “Type 2” or TN2), is characterized by constant aching, burning, stabbing pain of somewhat lower intensity than Type 1.  Both forms of pain may occur in the same person, sometimes at the same time. The intensity of pain can be physically and mentally incapacitating.  It is nicknamed “The Suicide Disease.”

I’m sorry, what?  The suicide disease?

When I decided to write a blog, I considered penning an addiction blog, a brain tumor blog, a music blog, etc.  Too confining – I have too many (mostly, scratch this entry) wonderful things to write about!!  The reality is, after this entry, I hope this blog serves as a means for me to focus on the humor, the good, the strange, the wacky, etc.  I could honestly write essays on everything from these issues to music to cats to “why are some words that are one syllable pronounced with three in the South?”  So, it is my hope I am venting to move forward, or, perhaps, someone out there knows what I’m talking about with this “rare condition” and can help.  Wouldn’t that be amazing?

I digress – if you read that definition, I have Atypical Type 1 and 2.  The tumor left in my brain is pushing on this nerve, causing all kinds of sporadic pain/burning/aching/lightning zaps.  And my tumor’s shrinking, that should be a big “YAY!”, right?  RIGHT?  Ahhhh, but no…as it shrinks, pressure comes off the nerve, allowing me to feel more of this side….resulting in…more pain.


Have you had nerve pain?  Weird, right?  Narcotics don’t help (thankfully, I’m a recovering addict)..and to add insult to injury, my pain is located in the lingual nerves IN MY TONGUE.  Thus, as I wake up, and talk, eat, move my mouth throughout the day – I’m using this part more and more, resulting in more and more pain as the day progresses.  All combined, I’m pretty much looking at MORE pain in the seconds/minutes/days/years ahead.

I take several medications that help, mostly meds which have a primary use to treat seizures, but have secondary neuropathic pain uses as well.  Some days I have no pain (YAY!), but these are becoming fewer and farther between.

Quite honestly, I say sever the damn nerves.  I can’t feel that side of my face anyway.  I’m NOT getting gamma knife radiation again (if you read this blog for the tagline GK radiation, please feel free to ask questions. Many people out there are terrified of diagnoses involving these meds, these radiations, etc.  Thus I’m putting this blog out there for those of you who need some venting, too!!!)  Acupuncture?  Can they actually stick needles into my tongue?  Become a Hunger Games Avox and just cut my tongue off??  Don’t think I haven’t thought about it.

Can I just ask WHO in the world can relate to this?  Please.  Someone!  I’m really in the dark here.  Because today, I’m in pain, and it seems to me I’ve paid my dues in the “life struggles” category.

If I’ve learned anything, though, in the rooms of AA, in my therapy sessions, in life, period – everyone has their shit.  I know this.  I also think, sometimes, some of us got the entire truck of manure dumped on our heads.  If you are also one of these people, again, I empathize.

So – that’s what I got today.  Winter is not my friend.  I hate that my parents feel as helpless as they do, I hate wondering if my sweet boyfriend is going to be able to put up with me should this continue at the rate it’s going, I hate that I sometimes constantly complain, or have to just come home from work and knock myself out rather than do what I need to do in the house, study for licensure, be a normal human being.  Can I really raise a family like this? Will I need a job in which I can be mute soon/work at all?  C’mon, God, I worked so hard at my other shortcomings……(sigh)…….










“I’m bipolar and I have hemorrhoids.”


That title got your attention, hmmm?  Let me start off by saying I have neither, but someone did….

As I get used to blogging, I realize I have a wealth of humor in my life and in my line of work.  I’m a therapist.  First, music, and now, soon, a licensed social worker.  Had I written down all the hilarity of previous jobs; in psychiatric wards, nursing homes, group homes, etc. I may have a decent memoir going, for now-I suppose I’ll write these antecdotes as the mood strikes.

When I was 30 (8 years ago), I was trying to ‘normalize’ life after having a serious brain tumor, a lot of surgery, and radiation.  It took me awhile to learn that I was experiencing a “new normal”…and this involved making big changes in my life.  But I started out doing what I knew best:  DRINKING!  Then not drinking, then drinking some more.

In this story, I was ‘drinking moderately’ (in my head.)  I was living with 2 wonderful roommates who hadn’t caught on to my bigger problem, and attempted to do something I used to do, pre-tumor.  Attend an annual festival of horseracing and (mostly) drinking in my town.  Moving from Utah to a Southern state, I’d grown to realize this city had many events that were really excuses to eat, drink, and be merry.  So to not do so, then, seemed impossible to the young girl who, pre-tumor, was there to party!

At the time, I had some unfortunate side effects from recovering from radiation, including dryness in my head but with a drippy nose that seemed to defy the odds.  Add to this a nostril I couldn’t feel (from surgery), my excessive paranoia from said drippy nostril caused excessive wiping of my face, usually too aggressively, as I couldn’t feel what I was doing.  Eventually turning this numb nostril into what looked like a split nostril.  As in, I looked like I had three nostrils.  I was trying, and my friends tried with me, to function ‘normally’ (even though there is no such thing).  “Sure, I’ll go to the festival, I’ll bring mimosas!”  And away we went….

The afternoon passed, and people became progressively more intoxicated.  I started feeling miserable.  I couldn’t hear most conversations, I over-compensated, I was self-conscious about my face!  This wasn’t how it used to be.

And then the blow:  An old ‘partying acquaintance’ approached us.  He was three sheets to the wind and loud.  I think we were introduced, and he exclaimed:  “Girl, look at you!  What are you trying to do to yourself!?  You need to LAY OFF THE COCAINE!  Your nose is a MESS! That’s DISGUSTING!”

Horrified.  My roommate quickly had him by the balls and ripped into him.  “What the fuck are you talking about, that GIRL just got over a BRAIN TUMOR, she hasn’t touched cocaine a day in her life (well, maybe once), and you’re gonna call her out on that?!  You should be ashamed of yourself, and you’d better apologize!”

And then something of hilarity occurred.  One of those “find the silver lining” in a situation sort of thing.  For me, this usually involves humor.  The guy pulled me aside, and said….

“Uhhhhhh……I’m really sorry…….and, uhhhhhh…….if it makes you feel better…..I’m bipolar and have hemorrhoids.”

Me:  “um.  wow.  ok.” (this story would be better with facial expressions)

REALLY?  My roommate’s lecture proved more than effective.  And such became the tagline of coming days, weeks, months, to remind us all of the humor of this shitty, shitty, situation.  ‘I’m bipolar and I have hemorrhoids.’

theLotus:  “Hey, man, that radiation sucked!”

Friend: “Well, it could be worse, you could be bipolar and have hemorrhoids!”

And on and on…..

I’ll post more on the “new normal” in subsequent years.  But on this day, I guess you could say, I felt…


Dedicated to Lindsay

Lots of pillows.

How many people likely write “Ok, this is my first blog,” etc??  A lot I would surmise.  I’m not sure what would even come about should anyone follow this one.  I just simply want to ‘get some things off my chest’ anonymously.  That is what appeals to me most.  But I don’t know how to start, except start SOMEWHERE.  I’m not looking for self-pity, the story of my life is a good place to start.  This foundation will be layered with some of the most humorous stories of my checkered past.

Let’s get the ‘woe is me’ shit out of the way.  When I was a baby I was premature and subsequently always had some form of bronchitis or another.  I got used to growing up sick.  Underdeveloped lungs, perhaps.  My mom smoked, as many moms did in the 70’s.  When I was 22, in college as a flute major, out of the blue I started becoming incredibly, painfully, stiff for my senior year of college.  A diagnosis of lupus scared the shit out of me, and I labeled myself for years.  Later, I think it was Lyme’s. Still not pleasant and still in the back of my mind, it happened, was odd and I moved on.   I had my first ‘breaks’ of depression and anxiety at 19, and later, when I thought the lupus was gone, I moved on.  To Utah, where I ‘fell in love.’  With an alcoholic, who quickly gave me the tools to become one myself, wherever that dormant gene lied. Then it became the raging priority in my life in years to follow…

In the midst of becoming an alcoholic, I was misdiagnosed with inner ear infections for 9 months (9 months of Meclizine, a dizzying drug), often chalking my vertigo to a hangover here or there, or what I thought was my inner ear…. only to receive an MRI that revealed a brain tumor the size of a tangerine, benign thankfully, but complicated.  “Vascular” the doctors said…a mess of entangled nerves and vessels.  This was my downfall.  30 hours of surgery and anesthesia, later extreme psychosis in the hospital ICU as a result, and Gamma Knife radiation.  I quit caring if my ass was showing in the hospital gown. I thought the nurses were after me and giving me Iron lung treatments, this is the tip of the iceberg of my panicked psychosis.   And then, later, I quit caring, period.  The surgeries caused deafness in my left ear, which is a true curse for any musician.  I’d been a music therapist for years, and this became extremely taxing. Not just taxing, at times near impossible..when you go deaf in one ear, you lose the ability to hear what’s going on around you, how to locate sound, and everything sounds like cacophony.  In the world of music I strived for harmony, and now it was a jumbled mess. 9 years later, I still cannot feel my face on the left side, which made many a date attractive.  Dating….”Hi, I’m theLotus, I ..”…what?  There was too much baggage in my ravaged life.  I can’t tell where sounds come from, often looking like an idiot, and also get food, runny noses on my numb side, resulting in a MESS my friends are kindly tolerant of.  It’s attractive.

In those 9 years, I eventually realized the beer and wine (and champagne!) benders I was perpetually experiencing, minimizing, lying etc. was a serious problem and joined AA.  While a godsend, I doubt everything every day.  Life has improved dramatically, but sometimes I want to scream…that none of the ‘woe is me’ was “fair” in the first place.  Ooooh, fairness.  Possibly one of my biggest issues.  No, life isn’t fair.  And if “My higher power” has a vision for me, I sure hope it’s lying on a comfy bed in the afterlife, and being lazy.  Perhaps allowing me to sip champagne without a problem, as I knit in a big comfy bed with lots of pillows.  That’s a bit of a selfish wish, my family can hang around too.  😉

Folks debate on what being a functioning alcoholic must really be like, a major contradiction, they say.  Yet, I made it through a graduate program, tumor, booze and all, with straight A’s.  I was not sane, but managed to keep all my secrets….secret.  Until the facade was cracked.  And then torn down like the damn Berlin Wall.

Let me end my first blog entry here.  And with this:  I don’t know what I’m doing most of the time.  I have fleeting moments of what I’d like to call sanity, hope, beauty, cynicism, sarcasm, slipping up, but mostly…humor.  Without it, I don’t know where I would be.

A note on The Lotus:In Buddhism the lotus is known to be associated with purity, spiritual awakening and faithfulness. The flower is considered pure as it is able to emerge from murky waters in the morning and be perfectly clean. Therefore in common with Egyptian mythology the lotus is seen as a sign of rebirth, but additionally it is associated with purity .