don't save the good stuff

Just when I was getting complacent about having my migraines under control, my brain decided to remind me of that threat, too.  Although in hindsight, maybe the anomalous surge of brain chemicals triggered my previous depression of thinking about so very many skin cancers.

It's a lot to deal with and also, not that much in the scheme of things.  I need to keep reminding myself how great my life is.

Focus on the good stuff, Wendy!  And don't save the good stuff for later.

new pants, new shoes, new dice?

I totally butchered that movie quote.  Get over it.

My friend decided I needed a proper vacation and scheduled a million things for me.  Okay, not a million, but for someone who has learned that it's best to do only one thing a day and chillax the rest of the day, it felt fun but overwhelming.

We had a lovely breakfast again, more black pudding.  Yum!

We left in the morning and hiked to the top of a hill (which any Floridian would call a mountain, just saying).  I was attired in my brand new hiking pants and hiking shoes bought specifically for this trip.  Both of which were great purchases in hindsight. My previous ones were last millennium's technology.  The new pants were stretchier, and the new shoes had just as much gription but way lighter.  I have since donated my previous two pair of hiking pants but haven't been able to get rid of my older two pair of boots yet.  Baby steps.

At the very top, there was a fun marker which I photographed at great personal risk in uncharacteristic gale force winds.  Apologies for not getting the whole thing in frame.  I was slightly scared I'd blow off the side of the mountain (hill).

The views from the top were spectacular.

When we got to the bottom, the view back up didn't look as impressive as the hike actually was because it's hard to get perspective.  There's a large whalebone sculpture at the top that maybe you can see if you zoom in.

We meandered back through town and made our way home for sustenance.  Then back out again to a different cliff overlooking a different beach.   It was all gorgeous.  Then back home again to change for a dinner party at their friends' house.  The food was exquisite (no photos because they were all my age and older and don't photograph their food like those young heathens do).   We had homemade salmon pâté, lamb shanks from Marks and Spencer (who knew they sold food?) cooked to perfection, homemade tiramisu with Malibu rum, followed by the ubiquitous cheese dish of so many cheeses who knew what they were anymore.  The drinks were plentiful, although I barely partook.  The conversation was interesting, at least that which I understood (that fucking accent).  However, after such a long day and strenuous physical activities (for me), it triggered a hefty migraine.

And back to my usual dilemma -- suck it up and pretend it's all fine or ruin their night and ask to cut it short.  Of course I did the former.  I used all of my techniques to not focus on the pain.  We got home around midnight, which might have been the only time I saw darkness.  They have long spans of daylight in the summer.

still can't hear you!!

Motherfucker!

My new(ish) phone broke.  That's the one I had replaced two and a half weeks ago under warranty.  They tried to tell me that because this was a factory-reconditioned phone, it was even better quality than new.  Obviously not, mofos!!  The new one lasted six months.  This one, less than one month.

It completely bricked, which made troubleshooting way easier.  Hold the power button.  Nothing?  Okay, done.

And somehow they fucked up my account and it looked like my warranty was over.  It wasn't, but it made the situation more complicated.  Another new(ish) phone is on the way to me, via ground shipping because fuck loyal customers, amirite??

And it decided to break while I was on the phone talking, which I was doing because I needed the distraction.  Because migraine!  I've been trying to cut back on migraine meds, so I was suffering through this one with only an ice pack and my own mental strength.  And my comfy bed and AC, of course.  Anyway, it turned into a clusterfuck.  I hauled my sorry ass out of bed and found my old semi-broken phone and switched out the SIM card.  It took me a few minutes because my dexterity was down, but surprisingly, it worked as soon as I powered it back on.  YAY!!

can you hear me now??

I spent way too long yesterday on the phone with my mobile phone carrier.  My phone was working fine, except it stopped charging quickly.  I switched out cords and plugs (which I subsequently learned are called wall warts -- dumb name).

I tried rebooting, charging in safe mode, and charging while off.  I tried cleaning the port.  By the time I called them, I had already done all of their level one troubleshooting techniques.  That woman quickly passed me on to level two.  Where I waited on hold over 30 minutes before it disconnected me.  Sigh.

I called back, waited on hold some more, explained my situation again, and finally got to level two tech support.  He asked me to try something and advised me it would disconnect us.  He asked if we could talk on another line.  Who has other lines anymore??  When I said I didn't have one, he said he'd call me right back.  I received a text message from him which stated he'd get back to me momentarily.  An hour later, I was kinda angry.

By the time I called again, a simple "hey it's not charging right anymore" turned into an hours long ordeal.  I may have accidentally let loose on the unfortunate person who answered my call.  I laid out some sweet expletives, before finally asking him to transfer me to level two.  He was super chill about it all, to the point I apologized right before he finally transferred me.  I'm kind of curious if they will be using that call "for training purposes" in the future.

The next level two person asked me to factory reset my phone, which is a HUGE hassle.  I contemplated lying and saying I did, but I was fairly certain they could tell.  It's a bit scary how much they can see what goes on in my phone.  Plus, there was a .3% chance it might work.

Of course it didn't work.  It was a hardware issue.  Duh!

The good news is that this tech support person did indeed call me back.  And my phone is under warranty, so I will be receiving a new one in the mail.  Factory reconditioned.  Cheatsy mofos!  They don't mention that when they talk about warranties.  This fucker tried to explain to me why a factory reconditioned one was better than brand new.  Whatever, they can all go fuck themselves.  I just want my phone to work and to charge properly.

What put the icing on the cake was that I had a migraine the whole day, which was exacerbated by this aggravation.  And I get to reinstall everything on my phone twice.  Once now, and again when the new one arrives.

Sunday Night Dreads

I'm not sure why I still get the Sunday Night Dreads, but it hit me so hard last night.  I'm assuming it's CPTSD from childhood since it's not really applicable now, but who fucking knows.  

I tried everything I could think of to calm myself.  I watched a sappy, happily-ever-after movie.  I took extra magnesium.  I took melatonin.  I imbibed medicinal alcohol.  I tried calling a friend.  I tried reading a book.  I tried listening to an audiobook.  Nothing assuaged that feeling of my body (and mind?) not feeling right.  I don't even have the vocabulary to describe it, except that I felt wrong physically.

I woke up this morning with a migraine, so maybe last night's condition was part of the prodromal stage.

  

 

trick or treat

I went with my friend and her kids to the mall to trick or treat.   It was quite an experience.  I haven't seen a mall that crowded since Christmas Eve.  And not just any Christmas Eve.  20 years ago Christmas Eve.  It was really packed.  And loud.  

I ate a few chocolates because they were from Godiva.  Who can say no to that?  Between the sugar (three tiny chocolate bites), the noise, and the mall scents, I ended up getting a migraine.  But it may have been worth it.  It was adorable to see her kids experiencing their first Halloween.  They were so excited to run up to strangers and ask for candy.  That's a fucked up tradition, huh?

I also experienced the split second moment of panic when I lost sight of them in the throngs of screaming kids and milling people.  It would be so easy to snatch a kid there.  I guess you can't live with that kind of fear because the odds are pretty small, right?  And the rewards outweigh the risks.  They had a blast playing with other kids and seeing all the fun stuff that the mall setup for them.  I have to say I thought it sounded lame taking kids to the mall to trick-or-treat, but I've changed my mind.  Climate control and bright lighting is kinda nice.

One of the jewelry stores was giving away adult goody bags.

Adult Halloween goody bag

traveling travails

After many, many times of opting out of full body scans at the TSA airport security, I was finally flagged as a troublemaker and received EXTRA private screening.  I was escorted into the back behind a curtain by two other women, which I'm sure was also on purpose, but whatever.  They can go fuck themselves.  Apparently, the difference between regular patdowns and EXTRA screening is she gets to use the fronts of her hands without any witnesses except her cohort.  I hope she enjoyed it.

Obviously, nothing on me or in my possession was illegal, and I didn't trigger any further alarms, but I can see how intimidating that process might be for someone without my intestinal fortitude, or my stubbornness -- call it what you like.

The cohort had the pleasure of rifling through my unmentionables, although she did this back in the public eye.  It was all security theater, and it constantly surprises me how (the) hoi polloi fall for this rigamarole.

Fooled them.  It was actually the distraction I needed not to completely lose my shit and start bawling in public.  I kept it together all the way until I got on the plane.  And then my eyes started leaking terribly.  Fortunately I had extra tissues in my purse that were only slightly manhandled by the TSA.

I thought I was doing a mediocre job of not making a scene.  Silent crying is one of my specialties.  However, the kind woman next to me noticed and asked if I was okay.  Of course that made me cry harder because awwwwwww.  I told her I was sad but would be okay.  She patted my knee and politely ignored my tears the rest of my flight.  When we deplaned, she wished me well and said she hoped my day got brighter.   Awwwww.  Just when I think humanity is lost, I see altruistic kindness.

I navigated a tight connection and caught my flight home without further incident.  Until I arrived at my car.  One of the tires was low.  I had a slight migraine building (perhaps because of the tears or the tears were because of the impending migraine, who can say), and I wasn't in the mood.  Logic prevailed though; five minutes putting air in my tire would be a lot quicker and easier than having a blowout on the highway.

I made it home safely and had an emotional reunion with Kitten.

chillax brohim

Finally, I can chill the fuck out!

After 9 days, my house air conditioner is working again.  Maybe even permanently fixed.   Fingers crossed.  I've been so stressed and anxious.  And overheated and cranky.  It was particularly brutal with a migraine.  

The universe kept conspiring against me to get this unit fixed.  I guess I'm learning patience.  And resilience.  And how to be assertive. 

So many lessons still to learn.

magnesium and rum

Apparently my brain decided to pull some shenanigans on me and amp up my anxiety yesterday.  I had a lovely morning, hanging out with friends.

In the afternoon, once I was home, my skin started crawling with anxiety.  I couldn't figure out why or how to deflect it.  So I took my own advice and took more magnesium.  Then I took a sip of medicinal rum.  About once an hour until the migraine finally hit and swept the anxiety into a maelstrom of pain and existential crisis.

Why am I here?  What good am I doing?  Who even cares?  Why bother?  Ad infinitum.

The migraine meds didn't make a dent in the fucking pain.  I laid awake in a fugue, listening to The Dresden Files on an audio-book, trying to distract myself from how pathetic I was.

When I woke up this morning, the pain and anxiety were both gone and so was all of my energy. 

Today has definitely been a self-care kind of day.  And I even scheduled a new masseuse for later this week.  Go me!

mediocre experiment results

My post-it note affirmations got put to the test yesterday.  I woke up feeling great after seven glorious hours of sleep.  And then my mood went downhill rapidly.  By early afternoon, I was in tears on my couch, snuggling with my cat, feeling worthless and unlovable again. 

I forced myself to wander room to room, reading all of my notes.  Some helped a smidge.  Others didn't even seem relevant anymore.

I assumed the low pressure trough off the coast was tanking my neurotransmitter levels and that my anti-CGRP meds were keeping the actual migraine pain at bay.  That may be ending soon, because I can feel the pain creeping into the back of my subconscious this morning.  I'm debating whether exercise right now will help or hurt or make no difference at all.

I had some small amount of warning, besides the weather forecast.  Kitten also seems bothered by weather fluctuations and threw up yesterday morning (on the tile thankfully).

the despair is only an illusion

I know that preceding a migraine attack, I am prone to depressive episodes.  And yet, each one feels so real.  I feel so unlovable, so unlikable, and also so pathetic for feeling that way.

One minute, I'm feeling pretty good about life and then WHAM!  Out of nowhere, I absolutely know that I am an abject failure at life.

I try to rein in my emotions.  But logic is scarcely a match for plummeting serotonin levels or whatever is going on in this mutant brain of mine.  I've tried pep-talking myself. 

"Wendy Lady, this is only temporary.  You've survived decades of this shit.  Ride it out."

The problem with that is it's hard to identify that my despair is only an illusion whilst in the throes of said despair.  To that end, I have written down many post-it note affirmations, as recommended by my mermaid friend and seconded by my sister.  I have strategically placed them all throughout my home to remind me of how great everything is when my brain isn't being an asshole. 

affirmations

welcome home, Wendy!

I forgot I had my last clinical trial appointment the day after I got home.  I was so jet-lagged and backed quickly out of my driveway and almost ran over a giant iguana.  He was easily four feet long and hanging out on the warn asphalt.

I drove the hour each way to my doctor and found out the weight loss was accurate.  Oh well, new goals.  Also I think jet lag lowered my blood pressure even further.  

I stopped for sushi as a treat and because I had no food in my house, and then I got super tired with a full belly.  When I pulled onto my street, all I wanted to do was park my car and go back to bed.  

I pulled up to my house and interrupted a slaughter of iguanas holding a committee meeting in my front yard.  Several smaller ones were all just hanging about.  I slowed down because I didn't want the extra work of cleaning dead ones off of my car.  They eventually scattered , and I had a glorious nap with Kitten.

naps on a plane

Why do they call it a catnap?  My cat sleeps longer. 

It was the red-eye, and I got as comfy as can be expected, but I slept only an hour.  Maybe two tops.  I took the preemptive Excedrin, which has caffeine and probably didn't do me any favors.  But then I countered it with the free Mai-Tai, which has alcohol, combined with a boring movie and noise-canceling headphones.  

Mai-Tai

My insomnia helped me a little because I wasn't too tired when we landed at my layover.  Until two hours of riding moving sidewalks later, playing Pokemon Go and looking for a mailbox.  (Mailboxes have really gone out of vogue.  But I had a Hawaiian postcard to mail, that I forgot about when I was killing time in Honolulu airport.)  Anyway, after two hours of playing and questing, I got sleepy and needed to sit down.  

I hung out at my gate until boarding time, and then I caught my connection home.  No more sleeping, not even a non-cat catnap.

diamonds and pearls, redux

One of my sisters and I decided to hike Diamond Head Crater.  Apparently it's famous, although I'd never heard about it.   We drove through a tunnel bored into the side of the mountain to get inside.  I paid the extra money to park there instead of walking in.  I recognize and acknowledge my limitations.  I figured the hike would take enough out of me -- I didn't need to add extra onto it.

We started at a fairly brisk pace, which was way too fast for me.  I walk most days in Florida heat and humidity, so technically this was the same.  Except for the elevation.  I couldn't breathe!!!  It wasn't that high, under a thousand feet even at the summit.  But I live at 4 feet elevation.  I'm also blaming the prodrome of a migraine for stealing my oxygen.  Plus it's kind of a rapid ascension.

Diamond Head Crater

My sister was patient and stopped frequently for me to rest. 

I briefly felt like a loser every time I had to ask my much older sister to slow down.  Sigh.  But I know I'm doing my best with what I've got.  

The incline was fairly steep and the trail very uneven because of lava formation.   Yes, I did play the ground is lava, but only in my head because talking was hard.  I was glad I'd brought my good hiking boots.  They helped me keep traction immensely. 

The view at the top was gorgeous but admittedly not as grand as some of the scenic overlooks along the highway. 

Did I mention we wore our matching sister hats? 

Once I got close to the top, either my adrenaline kicked in or the prodrome ended, and I felt fine the rest of the hike.  

When we got to the bottom again, I was a sweaty mess, but it felt just like any other day I go walking in Florida.  Minus the iguanas.  My sister went and played in the sprinklers to cool down. 

We stopped for kalua pig on the way home at Fatboy's.  Yum!

Kalua pig

diamonds and pearls

It seemed apropos to tour Pearl harbor with a migraine.   It kept me somber.  Probably it kept me more cranky than somber, but I'll tell myself I was somber.  I woke up at 4am with a migraine on my second day in paradise. 
  

I made coffee with my newly acquired Costco supplies and hoped the caffeine and the hot shower would help.  Then I dressed and walked 100 feet to the beach to watch the sunrise. 

It was so glorious.

sunrise

The water was the perfect shade of blue, what I've always called Caribbean blue.  Now I know it's also Hawaiian blue.  The trade-winds were blowing.  And just as the sun crested the horizon, a cast of crabs started poking inquisitive heads out of tiny holes.   One mutually scared me.  I yelped and he retreated quickly. 

I reluctantly left and walked back to my cottage.  My head wasn't getting better, so I popped some meds.  And got bombarded by a flood of texts about family drama -- missing car keys and missing cellphone. 

Off to breakfast and then an 8am tour of Pearl Harbor.  

As one of the few people with a working cellphone, a sense of direction, and the address of where we needed to be, I sat up front and navigated.  With a migraine.  Oh well.  I've faked it through worse scenarios.  I got us there and met up with the rest of our party.  Only 10 minutes late.   I'll call that a win. 

Walking in from the parking lot, I took more meds.  The pain was up to a 6 by now.  We had to take a shuttle onto Ford island to see the USS Missouri.   I used most of my concentrated powers not to puke on the bus.   Yippee.  It worked. 

USS Missouri

The battleship was huge and impressive, but I wasn't in the right frame of mind to appreciate the significance yet.  I took pics as I could in case I wanted to see where I'd been later.  

Pops said he didn't want the guided tour, so we humored him and wandered on our own.  And then joined the guided tour ahead of us already in progress.  After posing for family pics.

I had zero knowledge of what importance the USS Missouri had and was surprised to learn it's essentially where the Pacific theater part of WW2 ended.  It was very humbling to see the spot where 74 years ago, one side formally surrendered to the other.

Surrender formally signed

Instrument of Surrender

They erected a plaque there.

Surrender marker

The second bunch of meds were kicking in and mellowing me.  And I ended up hanging with Pops.  He said he'd been on the Missouri previously right after the war ended in NYC harbor.  And the stories continued from there. 

He and I toured the underbelly of the ship, with him reminiscing and explaining everything to me.  I took tons of pictures and learned more about his father and brother who were both in the Navy.  He was the rebel and had gone Army. 

One of my sisters found us halfway through and we started clowning around and taking pics.  I also got the welcome news via text that both the car keys and cellphone had been located.  But mostly I wasn't getting any texts because of being inside so much metal. 

When we finally surfaced, my phone blew up again with "Where are you guys" texts?  Apparently they had all skipped the underneath part of the tour, which was considerable, and had been waiting an hour.  Oops.

We got back on the bus to tour another museum but our tickets didn't work there, so we cut the trip short fortunately.  I was done in.  And ready for lunch.  So was Pops.  I think this took a lot out of him emotionally. 

We had a delicious lunch of Hawaiian pulled pork, and I navigated us home and bailed to go nap.

menu

Pork Plate Lunch

I woke much better but still groggy and went to the beach for fresh air and exquisite water.

resting in the shade and fresh air

second flight

I met up with my nephew and his girlfriend for the looooong leg to Hawaii.  We hadn't figured out ground transportation for the three of us to our cottages.  My sister, her daughter, and Pop were supposed to arrive an hour before us and get a rental car.  When we landed, my phone blew up with so many text messages from everyone letting me know they had missed their flight. 

There was a medical emergency when we landed, so while I was waiting to deplane, I texted a few times back and forth and arranged our ride.  My niece's boyfriend had flown in prior and had room for us and our luggage in his rental car.

I had taken more migraine medication on the second leg, and I was in less pain but definitely cognitively impaired.  We both used our phones to navigate to our accommodations, and between the two of us, we found it okay.  I had previously helped my sister figure out the logistics of where everyone was sleeping, so I directed them to their respective cottages.

As soon as I got to mine, I changed into my bikini and hit the beach.

My cottage

here goes nothing

Day one is a test.  How am I going to to do traveling these days?  Specifically with flying.  It's been so long since I've put myself through this, but Pop's 90th birthday family reunion seemed like a damn good reason.

Of course somehow it ended up being the longest plane trip ever,  except when I flew to the Middle or Far East.  Here I am jumping in at full throttle again.   It seems my only two speeds are idle and pedal-to-the-metal.  We won't talk about reverse.   

And because I'm flying so far, the first flight is at 7am.  I set my alarm for 4:45am.  Let's see how many triggers I can do before I get a raging migraine.

Spoilers: The answer was four.  

war stories

My Pops had to run some errands today, which included moving a couple of coffee tables.  He could easily lift the weight, but they were too bulky to manage alone.  Probably he could've found someone to assist, because who wouldn't help an old man do that?  But it's definitely easier with a second set of hands.  He picked me up, and I texted my sister that we were going to do it (because she had arranged it from afar).  She texts back, "are they even ready?"

Ugh, apparently, we didn't have any confirmation.  Pop said, oh well let's take a ride. 

Spoiler alert, they were ready, after many family drama texts later.

With some Tetris puzzling, we managed to fit both into his car.  One had a glass top, and we didn't plan ahead with any padding or wrapping.  Therefore, he decided to take surface roads home.

Pop was feeling nostalgic, so we drove by my brother's old house.  Which we couldn't easily get to because of new construction.  After a couple detours, we made it, and I texted photos to my brother, who was texting me photos of his poor dog at the vet, after a fight with another of his dogs.

We stayed on surface roads for about twenty minutes, until Pop got sick of the traffic, then he lost patience, was all, fuck it, and we tried to get to the freeway.  Three detours later, and we made it.  Surprisingly, the glass top of the coffee table was fine when we got it to his place.  We carried them both upstairs and set them up. 

After that, I was starving, so we picked up some food to go and took it back to my place. 

Continuing in his nostalgic mood, he somehow got on the topic of when he first enlisted in 1948, during a time of peace after the second World War.  All until the Korean War started, and he was still enlisted.  He was quite chatty, and his stories were so interesting.  About two hours into it, I wished I had recorded him.  But I thought it might make him self-conscious.  Plus I was fighting a migraine from all of the day's activity, and I could barely hold my head up and listen to him, let alone mess with any technology. 

It was with much reluctance that I finally said goodnight to him and went to bed to nurse my migraine.

I did it!!

I did my first ever aimovig injection at home by myself.  Go me!

It wasn't nearly as bad as I'd expected.  I had done two previously at the doctor's office under nurse's supervision into my stomach.  Yuck.  I was able to do this one into my leg.  Not sure which is preferable yet.  It hurt but not as badly as the clinical trial injections.  I guess maybe they changed the formulation.

I lived on the edge and didn't use the alcohol wipes first.

I'm trying another science experiment and going back down to one dose, which I was on for a couple years at first.  It's so expensive that I'd rather try this and see if it works.  Or at the very least, maybe one injection every two weeks, so there isn't any abrupt falloff.

shot through the heart

Stop being so dramatic, Wendy. 

It was two shots into my abdomen, nowhere near my heart, and definitely not through it.  But I couldn't find those song lyrics.  :)

My migraine clinical trial has officially ended, and I've learned how to do my own anti-CGRP injections.  Go me!  They're auto-injectors, so all I needed to do was click a button.  They made it much easier than any of my previous sumatriptan injections.  Those require a degree in mechanical engineering to figure out (in the middle of an attack so bad that a pill won't work).  Good luck with that!

Probably I'll inject into my leg going forward, but I didn't feel like dropping trou in my doctor's office when the nurse was instructing me.  They still burn a little but not nearly as much as the clinical trial ones did.  I have no idea why.  I hope this formulation works as well or better than what I've been getting.

I left with two band-aids on my stomach and one on my arm because they took several more vials of blood to see how I'm faring after 5 years.  I'm no longer suicidal from pain and despair, but this most definitely isn't a permanent cure.  I still get up to eight attacks per month with close lifestyle management.

I have more hope these days that maybe I'll grow out of it or discover the magic Wendy formula that allows me to have my life back completely.  Until then, I'm living the best I can, day to day.