Despite of my rage I am still just a rat in a cage…!

 

sun over the cyclone fence
Photo by Jimmy Chan on Pexels.com

Some people have dreams at night.  Some are vivid, some forgotten.  Whatever I dream, I may not remember but I wake with a song in my head.  Really.  I’m a musician, and there’s that, I’ve even worked as a music therapist and analyzed song lyrics in sessions with clients..but the songs I wake with are often complete and total happenstance.  Most of the time.

Actually, perhaps I should keep paying attention to the songs, or look into their meaning a bit more, as some mornings it’s just obvious.  So, 2 months ago I discovered a procedure for chronic pain that worked miraculously.  I don’t think I even appreciated those pain-free or limited pain days enough.  As last week, BOOM.  All the pain was back.  And this morning, after a long, taxing, painful weekend:

Image result for smashing pumpkins

The last time I gave good thought about the band, Smashing Pumpkins, I was…maybe…17, angsty and pining over a boy who didn’t like me in return.  But the lyrics:  “IN SPITE OF MY RAGE I AM STILL JUST A RAT IN A CAGE!” hammered on in my head.

And they were right!

I didn’t go through 6 weeks of 3 surgeries to feel the way I do right now.  I didn’t wear a hard neck collar for a MONTH to feel the pain I feel for the 7th day in a row.  I don’t deal well with the emotion anger – perhaps this was my subconscious’ gentle reminder that I.Am.Mad.

Perhaps all the songs I wake with mean something.  I had the B-52’s “Deadbeat Club” in my head all last week, rightfully so as I felt I belonged to one.

I don’t know what will happen with this pain, it’s complicated.  I think there is an answer, but true to form, I still feel like I’m stuck in the system that is today’s healthcare.  Stuck waiting on doctors, and medical reps, and devices to work AS ADVERTISED.

More importantly, I need to pay good attention to the songs I wake with. Variations on a theme of a blog.

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I’m baaaack!

Image result for spinal cord stimulator

So, it’s been almost a year since my last post.  What a whirlwind of events have occurred.  First, I’m one year sober again.  I have 6 years sober except for that one pain day when I blew it.  Back on that saddle!

The events in the past 6 months have been riveting.  On November 30th, I had high hopes to see “THE doctor” at Johns Hopkins for my trigeminal neuralgia.  I was shocked he had no options for me, but my pain is quite atypical as a remaining, debulked brain tumor is sitting on the nerve.  He told me that “there is a doctor at Duke doing some really innovative things.”  Got the referral, but needless to say, at that point I found a quiet corner at Johns Hopkins main hospital and sobbed.  I thought there were no solutions.

But – DUKE!  Amazing.  My husband (and loving support, caretaker and chauffeur) and I travelled the 3 hours to Duke.  Since then I’ve been back to the Tar Heel State more times than I can count.  But I’m finally pain free!  Here’s the situation:

So, there is a device called a spinal cord stimulator.  It’s old hat for many with lower back/thoracic/lumbar pain, but Dr. Lad at Duke has been more recently trying inserting these in the cervical spine – in my case, for chronic facial pain.  And it worked!

It was however, an ordeal and quite invasive.  First, a surgery with a weeklong trial to see if it helped.  I was reporting 80% pain relief (the company Nevro’s reps called every day to assess my pain for a week, and make the decision to insert device permanently if you have at least 50% relief), so a week later they inserted the device.  This involved putting a battery pack (like a very large pacemaker) into my right lower back.  It felt like raw meat for a few days, I moaned like I was in labor, but powered through the pain and after 2 weeks it subsided.

So, great!  It was a success.  But NO.  I was having some pain and thought it just wasn’t as helpful as I became more active..but then my post-op xray showed that the entire electrode wire lead worked itself out of my apparently stubborn neck!  Well, that explained the pain.  But I have to have a revision surgery a week later.  Thank goodness my job is super supportive.

During the revision, Dr. Lad wanted to make sure this bitch stayed in place, so he had to remove some bone to adhere it really well.  HOLY CRAP – I never experienced bone pain and as people say “It’s an entirely different pain that cannot be  described.”  I don’t know if you recall the antiquated 80’s video game “Dig Dug”, but that’s what it felt like!! And in my neck.  Lots of pain meds, and a very difficult ride home as every bump made me whimper.  (My poor husband).  It was another hard week. But no – really – bone pain is an entirely new tier of hell altogether.  I’m sorry if you, dear reader, suffer from it!

But now – I’m not in pain, physically or nerve.  It’s amazing to have no nerve pain, I don’t know what to do with myself!  I now have hours in my day that I missed the past 10 years as I would come home from work in extreme pain and had to take larger amounts of xanax to calm the pain, which worked.  I’m now getting off all of these stupid nerve pain medications and xanax, as I don’t need them anymore.  It’s lovely.

I’m almost out of the woods.  Unfortunately I’m wearing a hard neck collar to make sure nothing moves in my neck – these are a pain, but I’m not complaining.  I’m so glad surgery was a success, I’d wear this until 2020 if I had to.  But, only 2 more weeks and I can wean out of it.  And drive – not be dependent on my husband.  On the home stretch!

There are SO many things in life I want to do now that I have pain-free days!  My quality of life and relationship with my husband improved dramatically.  The other day, he said “It’s just so nice to not have to hear about your pain”….and it is. But a note on chronic pain – if you’ve not had it, it is all-encompassing.  And the ‘chronic’ part just compounds it every day.  It’s a horrible beast.

I’m on some support groups for spinal cord stimulators and feel so bad for the folks that got all this invasive crap done to them with no pain results.  Had that been me, I’d be crying at home right now.  But I’m so so lucky it worked!

I actually charge myself with an inductive charger every other night.  I’m like a cell phone – or robot, which I prefer.  The bionic woman.  Robot Social Worker is my favorite so far.

Anyway, that is my story.  If you have chronic pain and this is something that could help, go for it! Ask questions if needed, happy to help! For many it has been life-changing.  I’m happy to be in that club.

More blogs of my new life adventures soon!  🙂

Pain, medication, marriage, and relapse.

Image result for trigeminal neuralgia

Well, isn’t that a loaded topic?

If you have chronic pain, I really feel for you.  If you have trigeminal neuralgia, aka “The Suicide Disease” (what a pleasant description), I really, really, really feel for you.  See all those blue “bullet trains” parts in the woman above?  That would be your trigeminal nerve.  IT goes alllllll through your brain.  TN’s main cause is when blood vessels compress the nerve.

10 years ago, when I was only 28, I had a brain tumor the size of a tangerine, in which I had 30 hours under the knife and Gamma Knife radiation to stop it’s growth.  It still lingers up there, and in my case, my TN comes from the remains of that tumor compressing the nerve.  My pain is in my mouth mostly, and certain foods exacerbate it, etc.  I’ve had to figure a lot of things out. Vitamins, bland food, liquid diet.

Many people try many meds, surgeries, meds stop working, onto another med, etc.  They self-medicate with a few drinks at night and cannabis oil.  Yesterday I dropped $400 for a prescription for Lyrica, and this shit better dance! (Thanks, healthcare/insurance!)  So far so good.  Then I jinx myself raving about it, and it stops working.  Every. time.

Prior to surgery, I dated a man in Utah who was an alcoholic.  (Yes, I learned to drink in Utah of all places) — this was back in 2002, when the Olympics were there and you needed “Sponsors” to get into a bar.  Isn’t that actually the opposite of what a sponsor should do?  But I digress.  He was a functioning alcoholic, I was a new drinker, and in it for the fun!

But then after my surgery, I had a toolbox of negative coping skills.  I immediately started drinking the pain away.  It worked, but simultaneously destroyed my life.  So I got sober, and on the pain train of meds, etc.  TN is also progressive.

Last week I had a new kind of flare for 5 days, face down with ice/heat, two missed days of work, and a week ago, I finally understood why people commit suicide with this condition.  Some people have my flare of pain all the time.  But by Wednesday, I was insane with pain.  Almost 5 years sober, I relapsed.  Downed one last champagne bottle from my wedding in April.  I really don’t know how it happened, I was blinded by pain.  And the booze worked!  What a double-edged sword to have both of these issues.

I righted myself immediately and told my husband what I’d done, called my sponsor, and am back at square one in AA.  My husband is a HUGE supporter of both of my issues.  He took the alcohol out of the house, although I really don’t have any desire to drink. I feel like I should get a “Pain pass” for this short relapse, but I realize, I’d really had my pinky-toe dipped in AA at that point anyway, I wasn’t happy and I wasn’t working my program…which I also need to stay alive.

But for today, I have a pain reprieve.  Looking into surgery later this summer.  The break in pain is an immense relief, and I can’t believe the change in my mood, more patience with my clients, and overall happy to be where I need to be.

I didn’t write this blog to whine, hopefully it illustrates the many issues people deal with – both substance abuse and chronic pain.  May all of you find relief, if just for a moment, and make sure you’ve covered all of your bases.  I do wish I didn’t have to deal with both, but if I had to pick one, I’d definitely rather be an alcoholic practicing sobriety than the pain.  Chronic pain is all-consuming.  Advocate, especially if you work, so your “higher-ups” know what is really going on.  And know that someone is out there sending all the positive vibes I can.  And maybe some of you will send me some.

Thanks for reading.

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 the.best.cupcakes.ever.)  🙂

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…..

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.

CANDY KRAFT CANDIES, INC. 

HANDMADE OLD FASHIONED & FRESH

SINCE 1935

518.355.1860

Route 20, Guilderland, New York 12009

http://candykraftcandies.com/page7.htm

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?

Stabby-the-Unicorn---Clean

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.”  http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm

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.

SERIOUSLY?!?

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)…….

Seriously??