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!

 

Wedding Bells and Pain..

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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…..

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 uh..it 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….