Frozen -- but not the empowering woman one

After several months of denial and ignoring my pain, I went to see an orthopedist about my fucked up shoulder.  He took two x-rays, did some strength tests, and quickly diagnosed me with frozen shoulder (adhesive capsulitis).  

He immediately gave me a cortisone injection, which I briefly tried to decline, because have you met me??  And they'll follow up with my insurance and schedule me for weeks of physical therapy.

In my defense, I haven't been completely ignoring it.  My physical therapist friend has been routinely looking at it and doing something or other that hurts immensely and then helps.  And my massage therapist has also been working on it.  Besides that, I did all kinds of research and saw that it can eventually resolve on its own.  But it kept changing where it hurt (I guess during the beginning freezing stage), and I got a little concerned that it might be something other than what I self-diagnosed with no medical training.  So I finally capitulated and went to the doc.  He confirmed everything I had read.  Unknown cause.  Possibly hormonal.  Possibly autoimmune.

Interestingly, he said that more people than usual have been getting diagnosed with frozen shoulder since the pandemic.

Side note: that fucking cortisone injection has helped immensely.  My shoulder is still limited by range of motion, but it doesn't incapacitate me with nerve pain each time I try to push it.

Fun fact:  My friend from China says they call it "50s shoulder."  

I currently know three people who have similar situations.  Neither of the men have seen a doc.

surgery update

I had the first, more serious surgery 10 days ago.  The cancer itself (or defect as the surgeon called it) was itty bitty, a little larger than a freckle.  I was mentally prepared for another facial scar, albeit a small one.  They showed me a mirror of what they had inked on my face of tissue to remove.  It was pencil eraser sized.  I was still feeling okay,

Fast forward to numerous lidocaine shots later, two hours to wait to hear that they excised all of the cancer and wouldn't need to cut additional tissue, and then many, many more lidocaine shots to stitch me up.  And I went home with a much larger scar than anticipated.  Nine stitches.

I was crying and having all kinds of a pity party.  And again trying to come to terms that this was my new reality.  "Stop crying over spilt milk, Wendy."

Spoiler: I always cried when I spilled my milk as a kid, no matter how many times my father yelled at me to stop doing both.  Apparently, I still do.

I went in for suture removal a couple days ago and got up my courage to ask the surgeon why he cut so much when he clearly marked only a little.  This mofo was kinda awesome.   Not only didn't he throw his god-complex in my face to say "because it's your health" or some trite bullshit like that, but he pulled up photos to show me, drew diagrams on paper, and explained geometrical angles of best successes.  I felt a little better as I left there.

Also, wounds always look better when the dark stitches are gone.  Less Frankenstein-esque.

That night, I was relaxing and celebrating and about to fall asleep when I yawned and popped open the wound.

^e(&^(*@**@#SKH(*W&*&TW@^*W)(&)(!!!!

I called the emergency number for his office and had already made up my mind that I wasn't going to the ER that night.  I taped up the hole in my face and monitored it for bleeding.  It could wait until the morning.  He dutifully called back and told me to come in the morning.

I took a Xanax and went to sleep, trying not to think how hideous this would end up.

First thing in the morning, I canceled my massage appointment and instead went for more stitches.  That's self-care, right??

Eighteen motherfucking stitches later, I came home hurting and crying.

He still promised me that this scar would fade to nothing because of his geometrical angles.

At this point, I just want it to heal so I can eat properly again.  I miss that.

what's scarier than alligators?

It had been raining for the past few days, and I had been feeling down and cabin-feverish.  I decided to go on a longer hike than I'm used to through the Everglades with a local group.  Because it had been raining, I wore my hiking boots instead of my sneakers in case of muddy trails.  That was a good call initially.  Until the first mile when I started feeling some chafing on the backs of my heels.

I've had these same boots and heavy duty hiking socks for years and assumed they would be fine.  However I don't usually walk that fast or that far.  And I was an absolute dumbass and didn't say anything or try to adjust my laces or even turn back, although I could have done any of that.  The pain wasn't that bad, although in hindsight I realize I may have a weird idea of tolerable pain.

We saw bobcats, beautiful birds, and quite a few alligators, which I would have missed if I had turned back early.  I was in considerable pain after mile 5, but there was no shortcut to the car by then, and it was getting really dark.  So I pushed on. 

Driving home was so painful that I wouldn't stop for food even though I was hungry and craving a burger.  I took off my shoes the second I was inside and holy fuck, my poor heels were just abraded off.  I'll spare you the photos of that, but I will share the wildlife photos.

large 12 foot alligator

little bit closer to get a better photo

heron catching dinner

attack of the 'what ifs'

Anxiety is kicking my ass lately.  What if I never...?  What if X happens? 

I've tried several methods to quiet my brain, but I can't seem to get ahead of this.  I've tried guided meditation, walking in nature, weightlifting, socializing, alcohol, distractions, and talking to a trusted friend, among other things. 

I'm at my wit's end and not sure how much longer I can endure. 

My stomach is in knots, and I have to force myself to eat.  It usually wears off in a few days, so I'm hopeful I can stick it out until then.  Wish me calm.

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.

another day in paradise

I tried once again to have a mini vacation -- a one-day pass to Epcot.  You'd think the community of tomorrow would have found a cure for migraines.  Those lazy fuckers.

I did everything right.   It was a few days after my monthly migraine shot, so it was fresh in my system but not the first day after which can be jarring.  Apparently I'm very sensitive.  Sigh.  I tried to get enough sleep and eat strictly.  I had an eight day migraine-free streak, so I was doing something right. 

And then, BAM, the weather shifted abruptly, which obviously I can't control.  A few hours after arriving at the park, I started feeling the telltale signs.   I immediately took meds and then more 15 minutes later just in case.  Fortunately it never got too horrible where I needed to leave immediately, but it sure put a dent in my enjoyment and motivation to experience things.

I ended up sitting in a relatively quiet spot (who knew those existed?) by the Chinese Temple for half an hour or maybe longer (time is relative during an attack), while I had zero energy to walk.  All I really wanted was to curl up in bed.  

After that brief respite, I soldiered on and forced myself to fucking enjoy stuff.   The meds kicked in and made me somewhat numb and apathetic.  Not to mention the migraine itself wreaking havoc on my emotional and cognitive states.  It wasn't a complete waste of a day.  I did have fun and loved seeing the Pixar short films.  All of the rides I went on were extremely gentle.  I've learned my lesson about those.  Probably.

Oh well, maybe I can figure out some other nearby spot for a mini vacation next year.

Hope springs eternal, according to Alexander Pope.

madness is creeping in

I've had more migraine days this month than non-migraine days.  But that's not a disability according to Social Security.  I'm still bitter.

Yesterday, I was able to workout at the gym with my friend and have a sushi lunch together.  It was the first time I felt like leaving my house in over a week.  I came home so recharged and refreshed.  I truly needed that.

I forced myself to go for a short walk a few days prior because I'm dumb and thought maybe fresh air and slight exercise might help.  I barely made it home without vomiting or fainting.

I've had many days of lying in bed with an ice-pack, wondering why.

Why bother?

Why me?

Why do I feel so young and fantastic some days and so old and decrepit others?

Why did life go so horribly wrong?

Yes, I know it's random and no deeper meaning, but my mind still yearns for answers.

I've been listening to audio books and am almost through the whole Chronicles of Narnia series.  It's mostly soothing, although I adjust the volume level every few minutes, depending on my AC running, the amount of rain falling, any other outside noise, the placement of the ice-pack on my face, and just general pain and irritation levels.  Plus there's one screechy talking mouse, Reepicheep, whose voice grates on my literal nerves.  My trigeminal starts to attack me when he talks.

I have moments of lucidity when the meds kick in so I can feed the cat and myself, although my appetite hasn't been prodigious except for after the gym.  Mostly I've been surviving on frozen food because standing (or sitting on the floor) at the microwave for four minutes is about all I can endure.

My supplies are running low, and I will have to venture forth soon to replenish them.  I keep telling myself tomorrow I will wake up better.  It's kind of amazing how resilient hope is, even when all of the evidence is to the contrary.

so much rain

It's been almost two weeks straight of torrential rain, supposedly over 10 inches, with another 4-8 falling this weekend from Subtropical Storm Alberto.  I've had migraine after migraine, although I've caught a break the last 3 days.  Instead of a full-blown migraine, I've only had the prodrome with irrational emotions and excessive fatigue.  I snapped at my sister (sorry again!) and have been sleeping on and off about 10 hours a day, with just enough energy when I'm awake to feed Kitten and sometimes myself.

Washing my hair has become non-essential with my pittance of energy levels, so it looks atrocious, especially because I've been lying down on it.  One day, I'll splurge and buy a silk pillowcase to see if that helps my hair the way people claim.

DENIED!

Irony is anxiously waiting every day for the mail to find out about my social security disability approval process, and then skipping a day because I was too disabled to WALK OUTSIDE TO MY MAILBOX and finding the letter the next day saying I was denied.

Their letter:
"We understand you have some challenges with your condition according to multiple doctors, but we don't have migraine on our approved list, so you don't qualify and kindly go fuck yourself."

I might be paraphrasing what they said, so I should probably remove the quotation marks.  But according to the tears running down my face, that's what my brain assimilated.

The good news is that I was able to get to the mailbox today.  Yay for less pain and not thinking the sun is the epitome of evil.  The bad news is I started crying while talking to a lawyer because my brain was so fuddled that I didn't understand his question asking if I could work a full-time job.  But, hey, no, I'm sharp as a snail and can easily hold down a job.  GODDAMN FUCKERS.

Deep breaths, Wendy.  Crying might wake the monster again.

validation proclamation

Why do I still feel the need to be validated in my migraines?  I've been attending (virtually) the Migraine World Summit, and it's bringing tears to my eyes in almost every talk.  Healthcare professionals understand what I'm going through.

Each day there are different guest speakers being interviewed, and there is something for everyone.  Most are highly technical and really explore the chemical reactions that happen in our bodies.  All have compassion for their patients and are quick not to blame us for this neurological disorder.

I like that so many are honest in expressing their missing knowledge.  Not to say that they aren't educated, but that there are many unknowns in the field.  What works well for one person can have the opposite effect in another.  Or even in that original person at a different time.  And no one is blaming that person for fucking up something.  Yes, I've been on the other end of that many times. 

"You probably didn't take the medication right, that's why it didn't work."

"Are you sure you drank enough water?"

"Maybe you aren't sleeping as well as you thought."

"Is your stress under control?"

"How dare you eat (insert common food here) when you have migraines?" 

This last one is a doozy because experts have concluded that foods aren't necessarily triggering migraines, but they might be part of the prodromal craving associated with an impending migraine attack.  Whether or not I ate that bite of cheese had nothing to do with that migraine.

The bottom line is that treatment needs to be personalized for everyone and probably will change at different times in our lives.  Did I become a high maintenance woman because of my high maintenance brain?  Or is it fitting that a high maintenance person would have a high maintenance disorder?

Why not both?

do androids dream of electric sheep?

I've been playing Pokemon Go mostly as a solo game, although I have met various people out and about.  It's felt unseemly to play at my age, so I don't talk about it much.  I'm not old enough where it's cute, and I'm certainly not young enough to be in the demographic.  Or so I thought.

Sunday was #PokemonGOCommunityDay, and I figured it would be a good excuse to go outside and enjoy some fresh air.  Community Day is a three hour long event where they release extra spawns of a certain type.  This one was sheep.  I decided the local park would be nice for exercise and beautiful scenery. 

I got there about twenty minutes early and was SHOCKED to see the parking lot overflowing onto the street.  I parked two blocks away.  As I walked up, people were losing their minds coordinating raid battles, which I usually ignore because I can't solo them.  I gave myself an attitude adjustment and became social.  I joined two different raids and chatted a little.  Apparently Pokemon is serious business because these people stayed on topic.

One other detail I noticed was the age demographic.  There were a few kids, but it looked like they were dragged along by their parents.  Mostly it was adults, and I fit squarely in the middle.  It was surreal to hear older people yelling across the park about which augmented reality fictional characters were spotted.  I also ran into my favorite Thai restaurant owners there.  They'd setup a whole spread under a pavilion and invited me over to join their family.  I politely declined because I was there to catch 'em all not eat.  Just goofing.  I declined because I felt awkward crashing a family party I didn't know that well.

shiny Mareep

After ninety minutes, I was exhausted and sweaty.  It was the hot humidity before a violent night of storms.  I left early, showered, and went to bed early to nurse a migraine.  WHICH I STILL FUCKING HAVE.  It's not a bad one, so gratitude??

I heard a study mentioned this morning that says the more I focus on the pain, the more my physical brain structure changes, causing more pain.  See??  Denial really is the best medicine. 

stitches get itches

I guess everything is healing nicely, because it's starting to itch.  The incision is on my back and covered with steri-strips so I can't really see what's going on, even with mirrors.  I'll assume the best because I'm almost an optimist.

I'm starting to feel like an old, retired person now.  My days are occupied with doctors visits and health concerns.  Ugh.  I should shut the fuck up and be grateful that I have access to these specialists which I apparently so desperately need BECAUSE I'M OLD AND DECREPIT.  (More on that later.)

The incision got a bit painful when the anesthesia wore off, but the pain never passed a 4 on my scale of 10.  Unfortunately, the migraine that hit me the following morning was much higher (let's say 9 because 10 is too depressing to contemplate).  And it was on the opposite side of my body, so I couldn't get comfortable.  Roll to the right, owww.  Roll to the left, motherfucking owww.

It was a long miserable day.  Two triptan pills and one triptan injection later (which I accidentally jabbed into a blood vessel and holy fuck that hurt), my head was recovering.  Kitten came and visited, without hurting me.  Yay!

I was way too scared to take any Tylenol for my incision because that might set off my head again.  I moved gingerly for a couple days, which is what normal pain is designed to do, so in a weird logical way, I didn't mind the pain so much.

The Happiest Place on Earth!

Unless you have a migraine.  And then it's Hell on Earth.

Yes, I'm speaking of Disney World, more specifically, Animal Kingdom.  I wanted to see the new Pandora exhibit, which opened six months ago.  The day started off beautifully, and I felt great.  I was not able to procure FastPass status for either of the two Pandora rides because they were completely gone by 10am.  Disney's smartphone app was horribly invasive and ginormous.  So, I chose the shorter of the two wait-times and serendipitously, the calmer ride, in case the roller coaster fucked up my head.

Two years ago, when I went to Universal Orlando to see Harry Potter world, I was impressed by all of the detail in the building structures and character interactions while waiting in line.  Disney did not have that in the Pandora river ride.  They tried, but it was merely average, not extraordinary like the Disney of old.  The actual ride was pretty neat though.

As the morning progressed, I started getting warning symptoms.  I took meds right away.  They did nothing.  I took more.  Nothing.  I ate a healthy lunch in case that helped.  Nothing was stopping this migraine from throat punching my vacation.  Fuck!

I left the park at 3pm, thrilled to be able to go back to a dark hotel room, curl into a comfy bed, smash ice against my head, take even more meds, and bask in minimal stimulation.  No loud noises, no jarring rides, no bright colors, no strong odors.  Just quietude.

pride goeth before a fall

I've been feeling better lately and thinking maybe I can get my life back on track finally.

Until I went to bed at 2:30pm with a migraine.  I took meds, but it kept getting worse.  I took more.  And still more.  Kitten came in and snuggled with me for part of the day.  I didn't realize until today that she wasn't feeling well either. 

I hope my pain didn't stress her out.  I wasn't able to feed her last night, but that's why I keep emergency kibble out for her.  She doesn't love it, but she ate it.  And then she got sick all over the carpet.

meetup

I tried my first Meetup group.  I was a teensy bit nervous because I'm shy at first.  Or I have social anxiety.  Or I'm lazy.  Or something. 

This was a walking group.  How hard could it be?  

Four and a half miles in a little over an hour is how hard it could be.  I'm no longer deathly anemic anymore, but apparently I'm not fit as a fiddle either.  The gym is way easier.  I can rest as needed.  We were on a trail, so I needed to keep up. 

I got sweaty before we ever left the parking lot.
 

I felt the blisters form after two miles. 

By the time I got back to my car, I was soaked in sweat.   Ewww. 

I met some really nice people though, which was the whole point.  My local friend group has been shrinking over the years, and I'm feeling the need to expand it.  

One lady was a mountain climber from Munich.  Another man knew all about various fruit trees.  He was a wealth of knowledge about many places. 

My non-local friends warned me not to meet strangers in parks and go on a trail with them.  Because they might kill me.  I was wishing someone would at about mile three.  

I had plans to go grocery shopping after.  Nope.  I thought I might have a snack when I got home.  Nope.  I had two bites of fancy cheese and immediately soaked in a hot Epsom salt bath with peppermint oil.  That helped.  

Remember my tweaked knee from yesterday?  Yeah, I had forgotten, too.  Now I have two tweaked knees.  The stairs are fun today.

rain and wind starting

I took more meds last night and slept pretty well finally.  The pain is a dull tapping.  Letting me know it's still there, but not really bad enough to impede last minute preparations.  Yes, there are still more things to do.  So fucking many.

Imagine your house might blow away tonight.  What would you do to try to prevent it?  Barricade all the doors and windows.  I can't lift that piece of furniture.  Should I push myself, throw out my back temporarily because it might save my home?  Wrap up valuables.  After the photo albums, other stuff starts looking less valuable.  Maybe I should throw this away.  Do I really need it?  Focus, Wendy.  That can wait. 

What would you take with you in your bugout bag, assuming you had limited space?   Don't forget to research best options of where to bugout.  A neighbor?  A shelter?  Did I download the app that tells me that?

Now imagine you had a few days.  The choices become more complex, mixed in with impending doom and fatalism.  And migraines always have a starring role because they love stress and drastic barometric pressure drops.

Wish me luck.  I'll update as I can, but I'm assuming I'll lose power tonight.

bacon and meds

I think I've finally finished all of my outside hurricane prep.  My mindset keeps going between anxiety and resignation, mixed with a smidge of adventure.  I remember the hurricanes of past years when we went outside, albeit somewhat sheltered from my home, to see mother nature in all her glory and ferocity. 

But I was a decade younger then.   And not flying solo.  Therefore, no plans for that this time around.

My out of state family keeps hounding me to leave.  But they don't understand that I'm in pain with a migraine.  I have no energy and no patience for other people.  Add in a nervous cat.  And bumper to bumper traffic for 500 miles. 

The hurricane started looking better, am I right?  

I cooked up a bunch of bacon before it goes bad, washed it down with imitrex, and went back to bed.  

is there a maximum level of fear?

I haven't reached it yet.

I'd been having floaters in my good eye for the past few days.  I kept trying to ignore them, but I started to worry and then googled.  And worried even more.  So I called my doc, who said come in ASAP.  I didn't even get to finish lunch.  Although mostly I'd lost my appetite because of the adrenaline. 

I was awake at 3:30 am, wide awake by 5 am, and bringing in patio furniture by 7 am.  No alarm clocks or coffee required, only a 185 mph monster hurricane heading my way.

I called my manager at 8 am and rescheduled everything after today.

In between meetings, I rushed over to the pet store to buy a cat carrier, cat harness, cat leash, and cat sedatives.

Anyway, back to the floaters, which I'd been trying to ignore.  I dropped my bacon on the plate, brushed my teeth, and drove to the doc.  The good news is that it's merely a vitreous detachment and not a retinal detachment or tear.  The bad news is that I am high risk because of my previous one, and this could still cause one.

Six hours later, my eyes are still dilated, and I am medicated with a migraine.  I guess I'll finish the yard preparations tomorrow.

existential crisis

I am stuck wondering what's the point.  I have answered this question many times for other people.  But I can't seem to for myself. 

Why am I forcing myself to deal with health problems?  Why am I bothering with personal responsibilities?  Where is the joy?  The meaning?  The satisfaction?

Every time I feel like I've turned a corner, I end up circling back to my same fucked up place.  Or a similar one about ten feet over.

It's probably the migraine talking.  But if the migraines are that loud of a distraction, then what's the point?  

Also, I wrote some really great stuff in my head last night, but the bright screen of my phone (even turned all the way down with blue blockers on it) was not conducive to my emotional state.  So blah blah blah, fuck my life.