It’s getting better all the time… also, a sad goodbye to an old friend

Are you getting tired of my selfies?  I’m sorry, but I couldn’t let that hospital bed mugshot in my last post be the last pic you see of me. 

So, I’ve been taking 800mg gabapentin for one week now and it’s making a difference.  Well, in my skull at least.  It’s easing the cranial pressure, but does nothing for my orofacial pain.  I contacted Dr. Batal (who prescribed the Neurontin) and asked if I could take something like Tylenol too.  He said “Yes to Tylenol, no to Advil, Aleve, Naoproxen.”

I said thanks, maybe I’ll try to hold off on the Tylenol.  When he asked why, I said I was already taking 10 pills a day as it was. 

He said “10 pills?  You’re only supposed to be taking 8 of the Neurontin (gabapentin) daily.”  I reminded him I’m also taking two amlodipine a day for my high blood pressure.  This is crazy!

Anyway, I didn’t retouch this photo or anything (haha) but I DID take it in my bedroom under a soft light.  I know I’m no George Clooney, but I think I look a heck of a lot better than I did 2 weeks ago.  (But outside, it looks like I have 2 black eyes.)  I’m anxious to get the facial pain under control, but I’m nervous about leaving my apartment and going anywhere.  I feel very drugged from all the gabapentin.  I couldn’t walk a straight line if you paid me to.

I’m getting there though.  And right now I feel pretty fortunate.

This past Sunday, my sister Shawn texted me and said “Did you know Mike Pikula died?”  No I didn’t, and it shocked me greatly.  Back in 1980, a year after high school, I landed a full-time job at Murphy’s Mart (a new discount retail store like Wal-Mart in our hometown).  I quickly became friends with several people my age—Brenda, Rita, Kim, Rob, Mark, Mike.  Most of us hung out at Brenda’s house on Saturday nights, ate snacks and played board games and watched television together.

Mike & Brenda fell in love and got married in 1986, but we remained close until I moved to Pittsburgh a year later.  We pretty much lost contact for 30 years, until 2017 when my sister talked me into moving back to Waynesburg.  That didn’t work out, but before I moved back to the city I had a reunion with Mike & Brenda and we went out to dinner at Burgatory (an upscale hamburger joint) and then to La-Z-Boy Furniture where they helped me pick out a new couch.  The same one I’m sitting on right now.

I made Mike do a test sit, recline & lie-down on every sofa we looked at and give it a comfort rating—he happily obliged and it was just like the old days. 

It hardly seemed like 30 years had passed, we laughed so much that night and had such a great time.

Mike died of cancer a week ago, surrounded by his wife, children and grandchildren.  My heart hurts for Brenny Lou, I can’t believe he’s gone.  Rest in peace, Mike.

 

And so it goes… feeling foggy but hopeful

So a couple days ago (Wednesday) I got fed up with being bedridden for the most part, decided I’d confront this chronic head inflammation head-on (no pun intended) and walk to the store.

I got outside, down the steps in front of my building, about half a block up the street and took a tumble.  The pressure in my head just got too much.  An elderly couple walking their poodles across the street dashed over and helped me up.  Um, I love older people—the older I get the more I notice how they look out for one another.  They insisted on walking me back to my building, on the elevator and back up to my apartment.  I didn’t resist, was just too grateful.

I immediately filled my bathtub with Eucalyptus bubble bath and steaming hot water (it seems to calm things down, I’ve been doing this 2-3 times daily) and called my doctor’s office.

They asked what was going on, I told them about my fall and how I’ve been in a steady decline since my last appointment on February 28.  I’ve pretty much been bedridden this past month.  The attending physician there asked if I’d followed the prescribed treatment (antibiotics, daily Flucosan and neti-pot rinses, sinus sprays) and I said yes, but my sinuses were swollen, ragged and burned constantly, and I never had any congestion in the first place.  Just persistent, crushing pressure in my face.  She said “Stop using those products effective immediately.  I’m having everything sent over to the ER, get yourself admitted as soon as you can.”  

So I went to Mercy Hospital, along with my friend Erin (who stayed with me the entire night).  When it comes to friends, she’s as special as they come.

The doctor who talked to me was pretty special too.  Seriously, I felt like I was in excellent hands.  He said “Douglas, we have you here—let’s find out what’s really going on!  We’ll do bloodwork, CT scans of your brain and sinuses, set you up with an IV and a migraine cocktail.”  

Soon my head was swimming, but in a good way.  They did the bloodwork (to check for infections) and the two CT scans.  While waiting for the results, the doctor said “I see on your file that you think you know what this is.  I  want you to spell it all out.  I got plenty of time, so take your time.”   Jesus I almost busted out crying!

I told him about recovering from covid a week before Christmas, and this all starting a month later.  I spent my nights reading up on “long covid symptoms”, and read multiple accounts of people dealing with chronic inflammation and intense cranial pressure, and how it affected some people’s sinuses.  Many were getting misdiagnosed with sinusitis, and their headaches were ignored.  I thought that’s what happened to me.

He was writing a lot of stuff down (I figured it was something like “this patient is cuckoo”) but returned later with the CT results and said “Ok, your sinuses are in rough shape but only in a superficial way.  You have no sinusitis, probably never did.  Your bloodwork is fine and your brain shows no lesions or tumors.  But there is frontal lobe inflammation.”

He went on to say that he thought my long-covid diagnosis was correct, and that when the body is infected with covid, some areas (like the lungs, heart or brain) can go into ‘chronic overdrive’ and continue fighting the virus even after it’s gone.  He was going to prescribe gabapentin, an anticonvulsant that ‘tamps down’ an overexcited brain.

He asked if I was experiencing any brain fog, I said no.  He said “Well… you will.  You’re going to be taking 8 pills a day for the first 30 days, we’ll reduce the dosage if things improve and stay there.”

And so it’s been a couple days, and I’m sitting here in my living room on a quiet Friday morning.  I haven’t been up this early in over a month.  When I got up today and went into the kitchen to get a cup of coffee, I began to feel the familiar pressure bearing down in the front of my head, like a cinder-block.

But instead of feeling it’s jagged corners in my temples or the roughness of the concrete, it feels like the block has been wrapped in an angora sweater.  My face still feels pulled taut on one side and pretty sore still, but I almost like this drug’s dizziness.  I feel a bit ‘dumbed down’ and I don’t mind.

I’m very sorry I haven’t been keeping up on others blogs and such, but I’m convinced things will be normal again soon.  Thanks very much for letting me share.

 

Anxious for things to return to normal, but right now I’m in it for the (covid) long haul

Isn’t this a strange photo?  This is me sitting on the floor of my bedroom, wearing a Moist Heat Sinus Relief Mask from Amazon.

It’s a very soft, plush fabric that wraps around your head and comes with 3 heat settings and an auto-shutoff timer after 15/30/60 minutes.  It’s comfortable to wear and the heat can be soothing; I only wish it came with eye-holes!  Debbi from the blog ‘Life’s Funny Like That’ reached out to me with a link to this device and after reading most of the customer reviews, I went ahead and ordered one.

The instruction book says “Even though this comes with a shutoff timer, please do NOT wear it in bed or to bed, it can get hot enough to burn.”  So, unable to sleep or read or look at TV, you’ve got plenty of time to sit there and think.

It’s pointless to look back and wish you could have a do-over, but I can easily see how events played out that led me to this.  The Tuesday after Thanksgiving I stopped at Rite-Aid on my way to the Senior Center to see about getting my covid vaccine shot and a prescription refilled. 

There was a line, so I thought I’d come back the next day.  On my way out the door I said to the manager “You guys aren’t on the bankruptcy closure list are you?” and she said “Not yet!”  I didn’t return the following day, and when I finally went back on Friday—sure enough, the doors were locked with a sign on the front saying goodbye and prescription pickups were sent to the Giant Eagle on Mt. Nebo Road.

(That’s when I asked my friend Susie if I could ride along the next time she went there as she did her grocery shopping there.  I went with her the following Monday, she called me the very next morning and said she was sick and tested positive for covid; 2-3 days later I wound up positive too.)

She recovered from covid with no issues, I wasn’t so fortunate.  So if I hadn’t gone with Susie, would things be any different right now?  This is entirely my fault of course, but I bet my IRA I’d be pain-free and blogging about something else.

I haven’t been to the center since February 21.  We had a nice lunch that day of broccoli stuffed chicken and orzo, and they asked if I wanted seconds as there’d been several cancellations.  I said yes, thank you… but also admitted I was dealing with a buildup of orofacial pain for the last couple weeks and it was becoming too much to bear.  Little did I know what was coming…

I have to admit the persistent pressure in my forehead and temples is making me a bit mental.  Earlier today (I’m writing this on a Friday night) I decided to shave and walk to the store for some ham sandwich spread and a can of Resolve Carpet Cleaner.  Maybe do a little ‘early spring cleaning’ and freshen my bedroom carpet.

So I’m standing in line at the deli counter, and because it’s Lent there’s a lot of people in line for fish sandwiches and stuff.  The woman behind the counter says “Next!” and it’s the tall guy in front of me, but he’s turned sideways, talking to a woman not in line.  The deli woman says again “Next!  Next!”  and I lost it and poked the man’s shoulder and said “SHE’S TALKING TO YOU!”

The man jumped and said “Dude!  I was talking to my Mom!”   I said “I DON’T CARE YOU GOT A LINE OF PEOPLE BEHIND YOU!”   He said to his mother  “Can you believe this?  I’ll call you tonight!”

Now see.. normally I wouldn’t have said a word.  But it was my head doing that, not me.

I forgot where I was going with this… I guess I just wanted to put something new out there.  I know I’m going to fully recover from whatever this is.  (Lots of pressure in the front of my head with jabs of pain, sore sinuses and mouth.)  I no longer think it’s sinusitis, there’s no congestion, no (forgive me for being gross) colored discharge.  Just lots and lots of chronic inflammation.  At night I can sleep for the most part, and that’s a good thing.

As long as I’m thanking Debbi for sending me the link to that face mask, I also wanted to thank blogger Joanne for the Neilmed Sinus Rinse suggestion.  I’ve become quite the pro at using it, and the saline wash has been soothing to my dry, ragged sinuses.  I can’t believe I’m in my sixties and never used one before.

If you made it this far, let me know and I’ll add you to my will.  Thanks for listening.

 

That’s my head in the vise and I feel guilty it’s there, but I’m working on it

Last week, the day after my trip to Mercy Hospital to meet with my PCP and an ENT, my sister texted me and asked if I was feeling better now that I started the antibiotics. 

I responded I didn’t feel any better, I’d only taken two pills so far.  She replied “With strep throat two doses of antiobiotics you feel like you’re healed!”  I felt guilty for not having strep.

The next day, my friend Elisa (who works at the Senior Center) emailed and asked what happened at my medical appointment.  I told her my PCP believed this was a long-covid condition and they didn’t have all the answers.  But post-covid inflammation could persist for 3 months or even longer.

My friend said “Sorry, I’m not buying it.”  I felt guilty for sharing such a dire forecast, I should’ve just said I’ll be better soon.  (Still, this is now in it’s second month.)

Three days ago my friend Pat texted me and said “It’s 72F outside!  Go for a walk, I bet you’ll feel like your old self!”   I said okay, but the truth was I just returned from a walk to the market and felt guilty it didn’t make me feel like my old self.

The day before yesterday, I emailed Courtney (the director of the Senior Center I belong to) to inform her I wouldn’t be coming up for the Flatbread Turkey lunch, and could she please express my regrets to my flatbread partner Mary.  She said of course, and asked if I wanted to attend the St. Patty’s Day luncheon next week.  I said I’d better not schedule anything else just yet. 

But I still felt guilty leaving Mary in the lurch for lunch. 

Yesterday morning I called my doctor to let him know I was on the last of the antibiotics but wasn’t feeling much better yet.  He said “Douglas, the antiobiotics were to ensure we got any bacteria in your respiratory.  What are you doing to manage things?”

I told him I was taking a nightly bath with steam and epsom salts, it really seemed to ease the cranial pressure for an hour or so.  And I was going to bed with Vicks VapoRub streaked on my cheekbones like Indian warpaint.  

I added the Naproxen was a game changer, it reduced the pressure in my head by almost half sometimes and for hours too.

My doctor said “I only prescribed you ten of those pills for worst case scenarios, they weren’t intended for daily use.”  Oops.  He asked how many I’d taken, I said 6.  He said “You abused those, I don’t want you taking anymore.  Have you tried aspirin?”

I said yes, but they only help a tiny fraction of the discomfort.  He said “It’s better than nothing.  Next time follow my instructions.”   Yes sir.  Oh the guilt.

Okay, I just finished proofreading all this and boy this is one big boo-hoo, isn’t it?  If I post this on my blog, I’m going to feel REALLY guilty for sharing it with all of you.

But as long as I’m feeling so guilty already….

From my old comic book and sci-fi days… the unearthed videos of ApacheDug

While I’m waiting for this brain fog & long covid orofacial stuff to go away, I thought I’d share something silly I found (and long forgotten) on the internet Sunday.

Several years after my mom passed and before I retired in 2015, I belonged to an online club called Blammo.

Blammo was a place where we got into some pretty heavy discussions on everything from finances to music—but the focus was on comic books, movies, Doctor Who, classic and contemporary science fiction, Star Trek.

It was mostly guys and we teased each other relentlessly.  Some became like brothers.

I was going to do a series of videos on there after the first one got so much feedback, but I worried the guys would see me as a goof and nothing more.

There’s only 4, and they’re only 1-3 minutes long, but if you’re curious to see me jibber-jabber in person so to speak, lisp & all, here ya go.

1.  I made this first one to celebrate my 9000th post… MY 9000TH POST

2.  That first video got such a positive response….

3.  Third time’s the charm?  (I was on something in this one)

4.  Capped and caffeinated (this is still my favorite ball cap)