In a place I never imagined: I’m hoping it’s just for a long visit

This may be my last post for awhile.  I’m just not good.  Since developing my TMJ disorder in December 2018, it’s taken me places I never imagined.  From nine months of snap, crackle & pop in my face (my jaws were a bowl of Rice Krispies) to the constant dizziness, blurred vision and upper body issues that later joined in, it’s like I’m fighting gravity on another world.

A year into things when it ‘blossomed’ into the temporalis muscles (large, flat muscles that cover the sides of your skull), I thought I was having a stroke.  Very intense pressure.   Any kind of chewing intensified it, and I changed to a slurping diet. 

I also began wearing a hard, acrylic oral splint over my upper teeth, all day, everyday to keep my teeth from clamping shut.  It did the trick, but my TMJD retaliated and spread into my neck & upper back.

In mid-February, the pain & pressure began to lessen in my jaws at least, and I began experimenting with more soild foods like toast, eggs & the occasional large pancake. Finally, after a year I was feeling human again!  Soon I was eating things like beans and chopped hot dogs. 

March & April got even better, and I began eating baked fish, rotisserie chicken & baked potatoes.  Soft sugar cookies (I baked myself).

I was still wearing the oral splint 24/7, but would take it out long enough to eat and when my jaw began to feel ‘wobbly’ I’d brush my teeth and pop it back in.

Then towards the end of April, everything went haywire and I went back to Planet X.  Liquids only on this world.  I’m experimenting with soups & watered down oatmeal though.

This past Thursday, my dear friend Elisa went with me to see Dr.Singh at North Pittsburgh Oral Surgery, an oral surgeon & TMJ specialist.  A very patient man, he aked me to explain everything that was going on.  He then did a 365 degree scan of my head and examined my skull, neck & the interior of my mouth with a couple of (gloved) fingers. 

He said “The good news is, you’re not a candidate for surgery.  I see no abnormalities or fractures in the skull or mandibular region.  Butttt…. your masseters are pretty swollen and appear very tender.  You’ve got some serious muscle spasm going on and I can see the tendons in your neck and right temple are swollen.  Besides your jaw pain, are you having any vision or balance problems?”

I told him yes, it pushes hard behind both eyes and in one ear & my upper back.  He said these issues weren’t uncommon, but such muscular derangement were out of his scope. 

He suggested I buy lidocaine patches for the painful areas, and prescribed a 6 day steroid pack of menthylprednisolone, to “break up” the chronic inflammation.

He also told me not to be afraid to load up on Tylenol, “it won’t hurt your kidneys like ibuprofen.”   I was tempted to tell him that my PCP said that Tylenol was the second leading cause of liver failure, but I just nodded my head & thanked him for his time.

The irony of it all is, after 20+ years of being 60-70 lbs overweight, I’ve now lost 55 lbs.  While picking up these items at the drugstore, I ran into someone I used to ride the bus with daily (before I retired 5 years ago) and she was very kind, exclaiming how “fit” I looked since the last time she saw me.  I told her she looked great too. 

After 18 months of this, I admit I’m fearful I’ll never be my old self again.  I recently met a kindred spirit online (Dan from New York, a man in his forties who’s been going thru the same things after having his wisdom teeth removed a couple years ago).  He said “I’m not a suicidal person, but I just can’t imagine living with this another 30-40 years either.” 

Same here, Dan… at least I probably won’t have that long and ok, that was pretty gloomy.  As always, if you made it this far, thanks for reading. 

So I wonder what’s happening on planet Earth?

A friendly voice from the past: Georgia on my mind

Recently, I got an email from Georgia D., a classmate I haven’t seen since the 1970s.  (Okay, it’s been 41 years… wow.)  She wrote to ask why I left Facebook, and said she enjoyed reading my posts there.  She hoped I was doing okay.

To be honest, I was a bit surprised she reached out to me.  I knew Georgia was on Facebook, but she very rarely posted anything.  All I seemed to know was she was married to an oil exec (I think), had a son & daughter, and lived in Texas… or Egypt? 

She got around.  But that was pretty much all I knew.

I responded, thanked her for the message and told her I left Facebook almost 2 years ago, I’d been spending too much time there.  I hoped she was good, thanks for writing.

I sat here thinking about Georgia, wondering if she shared the same memories I did.  In our senior year of high school, strangely enough, we’d become pretty good friends. 

To be completely honest, we shouldn’t have been.  Georgia was very pretty, very popular and really had her act together.  She was a majorette, a cheerleader and dated a fellow classmate who was a varsity everything and handsome as he was athletic. 

(I wasn’t exactly a nerd, but I sure wasn’t part of their set.)

But our senior year, Georgia and I were both on the Yearbook staff and began hanging out a lot together.  We had the same sense of humor.  I always found it kind of special that she was the only one in school that called me Douglas.  I don’t know why, but I liked that.

Georgia today, looking better than ever 

Georgia & I had afterschool jobs in Waynesburg (a 15 minute drive from our high school), where she worked in a small boutique while I slopped dishes at the Olde Southern Pancake & Steakhouse. 

She had a car, I didn’t.  I’d sometimes ride to work with her from school (or get a lift home), but it was never just a ride—we would sit in her car and have long conversations about school, our hopes, the future.  Those personal talks meant a lot to me. 

Our friendship gave me a feeling of real confidence, that maybe I wasn’t as big a dork as I thought I was.

I sat down to write her a letter in earnest, then stopped and asked myself:  Were we really as close as I liked to remember?  Or was I seeing those dusty memories through a pair of ‘70’s rose-tinted glasses?

And that’s when I got a follow-up email from Georgia, with the attachment below.  It’s a note I passed her in class, a hundred years ago.  I can’t believe she kept it after all these years.

Georgia wrote “Here y’go, Douglas—we used to be good friends!”

We sure were. 

A few words about Dad and myself, this Father’s Day

This is Dad & me on my 14th birthday (my dad was 38 here).  While I thought he looked his typical handsome self, for years I was embarrassed by this picture.

I was going through a chubby phase at the time, evidenced by the Sears 'Husky Jeans' I was wearing.  I can still remember seeing this photo shortly after it was taken and looking at my then-life of too much junk food & too much sitting in front of the tv and wondering if my dad was disappointed in me. 

I didn't share Dad’s love for country music or western books or football, I was too caught up in my own world of spaceships, monster magazines & comic books.  I always imagined he'd be happier if I had a dried snake or rock collection, or traded baseball cards or built model cars instead of model Frankensteins.  I had an older brother who was considered an “official genius" and excused from the rigors of American boyhood, and a younger brother who was busy re-living The Adventures of Tom Sawyer (complete with straw hat & fishing pole, darn it). 

Many times, I’d awkwardly try to have a conversation with Dad if we were alone at the kitchen table or in his pickup truck, and get silence or a raised eyebrow in return.

Dad in his Navy days; in the 1950s he served as a radar operator on the real USS Enterprise, a Navy battleship


Of course as the years went by, I began to understand his quiet moods and 'staring right through me' wasn't necessarily a disappointment in who I was, but more likely a man caught up in his own worries of making ends meet, feeding his large family & trying to keep my mom happy while battling a personal demon or two of his own.

I wasn't the only one back then with a lot on my plate, so to speak.

Dad & five of his six kids at Ryerson Park; Donda in the lower left, Shawn with the beachball, me, Steve hidden behind me & Duke behind Dad.  It was Dad’s 35th birthday


There is so much more I could say here about the man, other than I love and miss him.  I regret more than anything that we didn’t get to spend more time together.  I guess what's important to me this Father's Day is remembering that towards the end, he began expressing a real interest in my work & life.  His questions surprised me, and I was more than ready to share.    

As a kid I idolized him, tolerated him in my twenties, and finally saw him for who he was in my adulthood—a private, flawed (aren’t we all) but kindhearted man. 

Until his passing in February 2001 at the age of 63, he was a bigger part of my life then I ever let on; apparently he always will be. 
                                                                 
This is such a trivial thing but it’s something I'll always remember with much fondness.  On my 13th birthday, Mom & Dad took me to dinner at Ponderosa Steakhouse, than shopping for a present.  I was allowed to pick out anything up to a certain dollar amount. 

As I walked up & down the aisle in a toy & hobby shop, Dad picked up a model of Mr. Spock from Star Trek firing at alien lizards.  He said "Doug what about this one for your collection?"  Mom said "Don, that was one of Doug’s Christmas presents last year!”  

But he knew what was important to me, and that was enough.

 

Happy Father's Day, Dad

The Old Man and the Blog: Well, that’s what it feels like

This is Renee, a sweet, busy woman I dated for a couple of years in the 1990’s.  We were on vacation in the Bahamas here, in our mid-30s, and does it get any better than this? 

Nope, I don’t think so.

At the time, we both worked for Omega Systems, an IT consulting company contracted by the city of Pittsburgh.  (I was a software developer for Allegheny County Dept of Aging, Renee was an IT manager at Alcosan, Allegheny County Water Authority). 

We met a year prior at a fancy dinner party at our VP’s house.  I was doing a running commentary of ice skaters Tonya Harding & Nancy Kerrigan (our hosts television was on but the volume was turned down) and I guess Renee’s laugh was more than just politeness, she called me the next day and asked me out to dinner.

Anyway, I can’t believe this photo is from 25 years ago.  I realize 25 years is a lifetime for some, but I can remember events from 1995 like it was just a few years ago. 

Oh the other hand, I look at my younger self here and it feels like I’m looking at another person… oh to be that young and fit again.  (And man, all that dark hair!)

Recently, my friend Erin (who does occasional IT work for Renee, now a project manager at a women’s hospital—it’s a small world) suggested I visit a chiropractor for some of my TMJ issues.  I knew of one that was only a block from my apartment (with some excellent Healthline reviews and in my insurance plan’s network) so I called and asked for an appointment.   They saw me right away.

Dr. Walsh was a very kind man, asked me to explain what was going on and what I thought was wrong.  I told him about the TMJD, and how it had spread into my head, neck, upper back.  I said “I’m no spring chicken, but I get up every morning feeling like a 90 year old man.  I have to take a couple of aspirin just to calm things down.  That can’t be normal… can it?”

He said for many older people, daily pain was a fact of life.  He also said that with my jaw dysfunction, it was bound to produce referred pain to vulnerable parts of the body.  

He did a pretty thorough physical examination, and said “Your patient form says you’re retired, but based on the curvature of your upper back, I’m guessing you spent decades hunched in front of a computer.”   Yep.  He began pressing into different areas behind me (causing me to yelp a few times) and told me I had a buildup of scar tissue in my right shoulder (an area I rub frequently), several muscle knots below my left shoulder and crepitus at the base of my skull and in my neck. 

I asked if that was why my neck seemed to make a lot of crunching sounds when I turned it left & right, he said “Yes, that’s crepitus.  Inflamed tendons rubbing against bone.  It’s not a bad thing necessarily, it just is.”  

He spent a lot of time with me—almost 90 minutes.  He did a lot of pressing, twisting parts of me to the right & left, always explaining what he was doing and why.  He warned me I’d be plenty sore the next morning, have lots of ice ready.  (He was right.) 

I’ll be seeing him twice a week for the next several weeks.  It’s only a 5 dollar copay, so why not.  He’s kind, knowledgeable and convenient.  And I have a feeling his treatments will be more practical than what that TMJ surgeon has to offer.

Oh, in case you’re wondering what happened to me & Renee, we wound up parting amicably a year or so after that photo was taken.  Our interests were just too opposite.  She enjoyed playing & watching sports and drinks and busy places, I liked quiet things, going to the movies or staying home with a pizza.  But she was a sweet, down-to-earth person and from what I hear, still is.

But what I wouldn’t give to wake up tomorrow morning and be a 35 year old Doug again.

How to lose 40 pounds in three months or less, without really trying

On March 13 when the pandemic “officially” began, my doctor’s office called to postpone my appointment for the forseeable future.  When they asked me if I had an accurate scale, I said yes & Sandy (Dr.Marvi’s nurse) said “Why don’t we get your weight for our records.”

Reluctantly, I fished my scales out of the closet, climbed on and told her:  260.2

She said “Are issues with your jaw improving?  Your weight is pretty high.”  

I told her I began to see some improvements with my tmj in February, and admitted I had added foods like ham sandwich spread, pancakes & overcooked pasta to my TMJ diet of scrambled eggs, mushroom soup and mashed potatoes & gravy.  (I know, I know—a lousy diet.  Let’s not go there.)

She spoke to the doctor, then told me Dr. Marvi wanted me to lose 10 lbs by my next appointment, whenever that was.  Well, if & when I do see them again, they should get their wish and then some.  I got on my scales this morning, 219.4. 

That’s a 40.8 pound loss since mid-March.

As glad as I am for the weight loss, I admit I wasn’t trying.  I suffered a backslide with my TMJ in April, and chewing became too painful an ordeal again.  But this time I told myself “Doug, you’re not going back to cream soups and gravy again.”

I now have a cup of coffee & glass of Carnation Breakfast Drink for breakfast, another coffee and glass of Metamucil for lunch (love that bulk fiber) and a tall glass of V8 Healthy Greens juice for dinner (along with hummus or a scrambled egg if my face is calm enough).

Lots of water, hot & iced tea throughout the day.  No ice cream.  Well, maybe a little on the weekends.  I get plenty of vitamins from those Carnation & V8 drinks, but I still take a vitamin D3 pill daily.

Do I miss stuffing my face?  Yes, very much.  Until this TMJD, food was my buddy.  I’d give anything for a big hamburger right now, french fries, pot roast, a plate of spaghetti & meatballs and garlic bread...

A tall pot of my spaghetti and homemade meatballs; I used to make this on Saturday, feast all weekend & still have enough for leftovers for the week

I know what you’re thinking, I am too: Your tmj is going to get better, then you’ll gain it all back.  But I can’t go back to how things were before. 

Chronic stomach issues (including a non-alcoholic fatty liver), hypertension, insomnia, a swollen leg & foot in the summer, a pounding chest and panting like a dog while walkiing home from the supermarket or barbershop.  I’m getting too old for this kind of stuff.  

I’ve lost weight before, of course.  5 years ago I began a “Weight Loss Challenge” to lose 50 lbs (I blogged about it here) and succeeded.  But it took a year of intense, daily workouts and careful meal planning.  It was exhausting.

I grew tired of the effort, and gained the weight back in two years.  “Near fasting” and a daily walk is easier.  I wish I wasn’t being FORCED to near-fast, but perhaps that’s what I needed.

Y’know, I weighed 170 lbs when I graduated from high school and will never be that skinny again.  I don’t WANT to be—I’m a shortish, stocky fellow who likes having some meat on his bones.  But if I could lose another 25 lbs and get down to 195, man that’d be something.  I haven’t weighed that in 25 years. 

At the same time, I’d happily slap those 40 pounds of fat back on my thighs & belly if I was guaranteed to wake up tomorrow morning TMJD-free.  After wrestling with it for 18 months, I’m scared things will never be normal again.  I have an appointment with a TMJ surgeon on June 25, and frankly I’m dubious. 

So (for now at least) I’m trying to put a positive spin on things and use those TMJ lemons to make lemonade—well, without too much sugar.

The barbershop & Shingrix: stopping long hair and shingles in their tracks

Shortly after I woke up Saturday morning, I rushed to my kitchen, grabbed a couple gel-packs from my freezer for my jaw (this TMJD is always the worst in the morning) and looked out my little kitchen window.  I saw the gorgeous sky & trees gently sweeping their branches in the breeze and told myself:

As soon as you have your coffee, get yourself cleaned up; you’re not staying indoors today.

I wanted to walk up to my local barbershop and see if they’re open yet, then go to Rite-Aid and see if a shingles vaccine was available.

Shingles??  Yep.  My sister has been dealing with a recent bout of bad back pain, tingling, numbness & blisters on her hand & fingers.  Her boss thinks she has shingles, her doctor says she’s not.  She got relief from a steroid prescription, but who’s to say what’s next.  All I know is, I’ve heard how painful & serious shingles can be.

When I arrived at Lincoln Barbershop, I was surprised to see their red & blue striped pole rotating out front.  Yes!   Their door was propped open with a sign “YES WE ARE FINALLY OPEN”.  I peeked in, saw my barber Rose and her sister Angie cutting two men’s hair.  Rose said “Dougie Fresh!  Look at your hair!”   I reminded her the last time I was here was Valentine’s Day.   She said “Well, I have good news, and bad news.”  I said to give me the bad news first. 

She said “We’ve had to raise our price to 20.00.”

Ouch—well, they’ve been charging $14.00 since 2009, so I can’t say I didn’t see it coming.  I asked “What’s the good news?” 

She said “We only cut by appointment now… isn’t that what you’ve been asking for years?  My next opening isn’t until Wednesday at 11am.  But if you wait 30 minutes, I can do yours next as my noon just cancelled.”  I wanted to hug her.

(Here’s the shop, and that’s me up above, right after coming home from my first haircut in 4 months.)

I gave Rose a big tip, said I’d see her again in 4 months (I was kidding) and crossed the street to Rite-Aid.  I ran into Jim, my 70 year old neighbor from my old apartment building.  He asked what I was up to.  I told him about the shingles vaccine.

He told me I was a worrywart, and I told HIM that 1 out of 3 people age 55 and over will get shingles if they’re not vaccinated.  1 out of 3!  Jim said I should focus on getting my jaw straight again, but added my haircut looked nice.  Thanks Jim.

I did get the first shot (you get 2, spaced a couple months apart).  When I asked how much it cost, they said zero, as long as I had health insurance.  The pharmacist warned me that for older people (55 and over), Shingrix sometimes came with some “pretty adverse effects”.   HE WASN’T KIDDING.

Around 2am, I awoke with a start. shivering very hard all over.  I checked my thermostat, it was 72F in here.  What the heck?  I awoke again a few hours later, every muscle in my body aching and feverish.  I took my termperature, 101.3. 

My first thought was I caught the coronavirus—I could barely lift my head off the pillow.  Then I googled Shingrix, and learned the flu-lke symptoms are pretty common and can typically last 1-3 days.  I spent the entire Sunday in bed.

At least I’m halfway there to not having to worry about those awful shingles in the future, and wound up with a great haircut too.  I just hope my sister is okay.

There’s some crazy times outside my window, but it’s crazy times in here too

Last night I was here in my livingroom, pacing back & forth (I’ll get to this) while watching history unfold on my tv.  Those protests for George Floyd and racial inequality, spilling out from this country and across the globe… so inspiring, so humbling.

Around 9pm when Rachel Maddow came on, I was feeling angry & hungry (I was angry because I WAS hungry) and decided to chance things and open that box of Life cereal I bought last week.  Poured a small bowl, soaked it in milk, let it sit for a couple minutes….

Do you remember those balsa wood toy airplanes we played with as kids?   With the propeller connected to a long rubber band?   You wound up the plane to go by turning the propeller with your finger.  That’s what my face was doing as I slowly chewed the first bite, then the second… my masseters begin to tighten until I thought my head was going to pop off.   After 4 bites I tossed the rest of the bowl into the garbage.  

I went back to the livingroom, paced in front of my tv for another 15 minutes, then went to bed.   (Around a month ago, it began to get too uncomfortable on my jaw, eyes & neck if I sat longer than 15 minutes on my chair or couch.  It “stretches things out” if I’m on my feet, or flat on my back in bed.  I don’t want to spend my days in bed, so I wind up doing a lot of pacing.  At least it’s good for my circulation.)

After going to bed and holding my small tablet above my face (thank God for that tablet), I tapped in Google Search “TMJ + NECK PAIN + REDDIT” and was surprised what I found; a 40 year old man had described my last 18 months in eerie detail.   A whiplash injury gave him crazy jaw & facial pain for a year, a month-long lull where he believed he was on the mend, than a return of the pain—which blossomed into his head, neck & shoulder blades.

He had an IT job and worked at his computer standing up, “sitting seems to really magnify things”.   He was then forced to take a 6 month leave of absence.

What was even crazier was the response he received from a 30 year old young woman who wrote that he just laid out her story, and it had gotten so bad she wound up quitting her job, giving up her apartment and moving back in with her parents.  She said she felt like a 90 year old lady.

I did follow-up searches on both of these people, as their stories were 3-4 years old.  It seems that for both, they began to see real improvements a little after the 2 year mark.  (Both still get the occasional ‘flare up’, but for the most part they’re better.) 

I really thought mine was going to be better now (based on the hearsay of one doctor who claimed the disorder resolves itself for many within 18 months).  A few months ago, in mid-February, mine did subside from real pain to discomfort more than anything.  For a couple months, until mid-April, I began eating like my old self again.  I was starting to believe I’d be splint-free and back to my old self by June.

The good news is, I AM splint-free.  (I didn’t have a choice, it was beginning to cause a lot of head & neck spasms.  I stopped wearing it 24-7 the morning of my 6 month anniversary with it.)   The bad news is, like those 2 unfortunate sufferers above, mine also returned with a nasty vengeance, flowering into the top of my head and back of my neck.  For some reason, the pain in the mornings has been so brutal I usually wake up gasping.  This has been the craziest experience in my life.

Believe it or not, there IS a bright spot from all this!  But I think I’m going to hold off sharing it until my next post.   As always, thank you for visiting my blog and putting up with my umpteenth ramble about TMJD.  I think my 18 month sentence has been extended to 2 years, but I have to believe I’m going to beat it.