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:

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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!

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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.

Learning to deal with death..

I took a new job last November, at an amazing facility for younger adults with irreversible physical disabilities.  Imagine visiting a traditional nursing home and seeing that one client who is younger, maybe has Multiple Sclerosis or cerebral palsy, who doesn’t really fit in with the more geriatric programs offered.  My facility is 130 of those younger individuals, this is their home, and programs range from music therapy, occupational and physical therapy, and recreational outings to places like adaptive horseback riding to the movies to travel scholarships to places like Walt Disney World and the beach.  My clients are blessed to be spared some of the other group homes I’ve seen, which I still don’t understand how they passed their state inspections.

This is their home.  They live here for years and years.  But they also die here.  While we are outfitted with an amazing chaplain, hospice services, etc., some of my new job responsibilities include the organizing of funeral services, sitting with ill clients and their loved ones, all the nitty gritty.  I’m most proud of our mission that clients are treated with dignity and respect on all levels.

But, dealing with death, the unknown, is hard.  Knowing what to say, what not to say, what faith, if any, is regarded.  Most of the time, I handle things well – I handle death well.  I’m a realist. In many cases, it is a blessing that my clients are not suffering anymore.  But as I grow closer to some of my folks, I know this will be more of a personal and professional challenge for me.  When you take a job here, and you’re ‘in’, you’re in for the long haul.  Their home becomes your ‘home away from home.’  And in many ways, I realize that as a social worker, I am part of many of my clients’ families, too.  It’s a tedious balance, but rewarding beyond measure.

Death isn’t something a lot of people think about on a daily basis.  And as an agnostic, it can be very scary to think about.  Are the stories about people ‘seeing the light’ really true?  Is there an afterlife?  Is there an ‘underlife’, and if so, am I going there?  Growing up Catholic, I used to fear that if I missed Mass one week, and died in a car accident before getting to confession, would I meet Hell criteria? (I think it’s safe to say I had an active imagination and have come a long way.)

10 years ago, I had a very difficult time with a brain tumor, and found at the tender age of 28, I was being asked if I had a living will, an advanced directive, etc.?  Wait, do I WHAT?

And grief!  I could explain the stages, what to expect, etc., but everyone grieves differently and at different paces.  There is no timeline on grief.  And those stages of denial, anger, bargaining, depression and acceptance do not always occur in that order.  And all of that is OK.

I could preach the importance of such things as advanced directives, and will put in one plug here:  if you haven’t thought about it, try.  Through life experience, I’ve seen and learned from others that the last thing I would ever want are my husband and parents to have conflicting opinions regarding what to do with me should I become incapacitated.  Your decision can be made by you in a better frame of mind if you deal with ‘the mystery’ sooner than later.

Signing off as I find my own paperwork to fill out.

That perfect bite: The Pittsburgh salad…

via Daily Prompt: Fry

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If you follow my blog, you see that I just got married.  You may also have read that I ate lettuce (the un-fun kind of salad, greens and veggies and fat-free dressing) for a month to fit into the darling $70 dress I found last fall.  Behold:  When it’s salad time now, it’s super-fun salad day!  Especially yesterday:

See that fry on that fork?  Right at the very end of the tines…  With that lettuce, grilled chicken, fatty-fat Ranch (must be Ranch) and tomato?  Allow me to introduce to many what I grew up with living in Western PA:  The Pittsburgh Salad.  And what makes it a Pittsburgh Salad?  FRENCH FRIES.  Hot, salty, cheese-melting, yummy french fries.  Now, I have the unfortunate stomach that I can’t have much fried food (which is actually a blessing in disguise, say, I don’t know, when you must speed-diet for a month to rush-fit into your wedding gown).  But – that wedding is over, the dress preserved – yesterday’s cafeteria criss-cut fries were perfectly lightly and deliciously fried.  And onto Pittsburgh’s best kept secret.  French fries on the salad!  It was a good day.

Many people criticize the health component of a salad, why would you ruin this w fries?  Um, I don’t know, why do YOU ruin your salad w fried other things like fried meats, bacon, sesame noodles, fatty salad dressings, etc?  The moral of the Pittsburgh Salad is that we ‘burghers don’t give a shit.  When salad came to Pittsburgh, we just made it as tasty as possible.  Who said it had to be healthy? Sure, you can opt out of the fry game and make your salad as healthy as possible, but, bottom line:  You want ‘the works?’  Well, they’ve got them all there.

And ‘they’ had them yesterday in the staffeteria at work.  And even though only 2 other Southerners understood the ingredients on my plate, that’s fine.  More for me!

Don’t believe me?  Try it for yourself.  Or high-tail it to Starwood Restaurant in New Castle PA, where they smother the salad fixings w grilled mushrooms, grilled meat, melty cheese, fries, and dressing of your choice.  Served in a giant wooden bowl.  And bon apetit!