Waiting to come out from the shadows, & be myself again

I’ve been holding off writing, but only because I was waiting for everything to be right & normal again.  But more & more I’m wondering when that time will come, so I’m just going to share things now.  The past 25 days have not been good ones, and in fact it surprises me to type that, because it seems like it’s been going on for so much longer.

This is by no means entertaining (for you or myself) but I just need to get this out of my system… if not the pain, the words at least.

Here’s a timeline of what’s been going on.

Wednesday, July 20:  I’m sitting here in my apartment, folding laundry when I suddenly have a sensation, more like a spinning jolt of pain in my lower left jaw.  What in the world was that??  I called my dentist’s office right away:  “Do you guys remember that crown I broke on my back molar on May 29 that you cemented back on?  I think something’s going on with it…”   They told me to come in the following morning so the doctor could have a look. 

The following day he checks it out:  “Doug, it looks good to me.”  I tell him there’s an aching numbness there now, and in my teeth in the upper jaw too.  “Doug, we can’t do anything until the pain localizes.  Wait a couple days for that to happen, and come back.”   I wait, but now this ‘pain of sorts’ is in my right jaw too.   When I return that Friday & tell him, he says “I don’t think it’s a teeth issue, Doug.  Referred pain from a tooth can bounce to other teeth—but only top to bottom & vice-versa.  It DOESN’T travel to the other side of the jaw.  Go home & take some ibuprofen, I’m sure it’ll be fine in a couple days.”   It wasn’t, and I spent that weekend in a very anxious state, convinced my teeth had all abcessed while rubbing my gums with Anbesol every half hour.  Dammit, I’m a walking infection—I just know it!

Monday, July 25:  I return to the dentist and plead with him to take x-rays of my left jaw (I’ll worry about the right side later).  I’m convinced he’ll see a spider-web of evil poison circulating there, oh he’s going to be sorry he didn’t believe me during my first visit!  No such luck.  He returns with the x-rays, tells me he sees nothing but teeth that have been root canaled & crowned with no underlying infection; but if I REALLY want someone to dig around in there, he can recommend a good endodontist.  I return home & google my symptoms and read up on what endodontists do (and it doesn’t sound pretty).  But now I’m dealing with a lot of sinus pressure too, so much it feels like someone punched me in the face; and waitaminute, it says right here that a sinus infection puts a lot of pressure on the upper jaw, making the person think they have a toothache.  (Okay, this started in my lower jaw, and I have zero nasal congestion, but that’s beside the point.)  All I need is some good antiobiotics to clear this sinus infection right up.  I happily relate my self-diagnosis to my sister Shawn & schedule an appointment with my PCP.   Oh this pressure on my teeth, ears & eyes is driving me crazy… sweet relief is only days away.

Thursday, July 28:  It’s my first visit to a doctor’s office in over 10 years.  The doctor (a younger woman in her early 30s) sees me right away & I make sure & let her know I’ve spent the last year doing all the right things & lost 50 lbs to date.  She congratulates me, asks me a load of questions about my family’s medical history, then tells me to describe my symptoms.  As I do, she is typing on her computer.  (Um… aren’t you going to examine me?)  She finally looks up & says “Sounds like a sinus infection, I’m sending prescriptions for antiobiotics & steroid nasal spray to your pharmacy.  If you don’t feel better in 5 days, let me know.”  Hooray!  

As the days pass, I take the amoxycillin-clav as prescribed & inject Flonase into my sinuses, but the discomfort is constant; no change.  Consumed with worry, I can’t sleep; I have no appetite & tell my sister I suspect this isn’t a sinus infection after all.  She sadly agrees. 

Monday, August 1:  I call my PCP’s office & tell them I’m not any better.  “Doug, you’re going to have to see an ENT—ear, nose & throat doctor.  Do you want to come back in, or would you rather skip the middle-man and go directly to the specialist?”  I opt for the latter, I’ve lost faith in this PCP.  I find an ENT that accepts my insurance & they schedule me to come in the following week.  But I tell them I’m in absolute misery, can they PLEASE see me sooner.  “Doug we do have one opening tomorrow, but it’s in Aspinwall, not the office near you.  Do you still want it?”  I have no idea how I’ll get there, but YES, I’m feeling desperate.

Tuesday, August 2:  Thanks to my friend Danielle (who arranges my ride there via Uber) I’m at the ENT.  I explain the symptoms (facial & jaw pain, constant pressure in my ears & sinuses but no congestion) and he examines my ears and throat, then tells me to prepare for some discomfort and runs a tube into my nose.  “You don’t have any sinus infection, and furthermore, I don’t appreciate these general practitioners who prescribe antibiotics for every person who complains of sinus pressure.  I suspect you have TMD.  In the meantime, I’m going to prescribe a 6 day medpack of methylprednisolone, it’s a steroid for severe inflammation.  On the first day, take all 6 pills together, early in the morning because they tend to make some people a bit jittery.”   Thanks Doc.  So what is TMD?

I come home & tell my sister about the steroids he’s prescribed.  She questions my taking them, tells me they’re heavy duty and come with some scary side effects.  She then says “DONT TAKE THEM.”  I agree to hold off until I can talk to the doctor.

Wednesday, August 3:  The ENT tells me I’ll be fine, begin taking them tomorrow.  I tell my sister I have no choice, the constant pain & pressure in my jaw & face is becoming too much to bear.

Thursday, August 4:  I had zero sleep the night before; I mean none.  Around 6am, I decide to stop twisting & turning, get out of bed and wonder at this medpack.  I’ve been reading up a lot on this condition, TMJ (or TMD)--temporomandibular joint disorder the past few nights, and so much is not known about the condition.  Some people suffer with it for weeks, others months or even years.  There’s no ‘real’ treatment, but plenty of TMJ specialists who claim they can treat it with steroid injections, $2,000 custom mouth splints & thousands more in dental work.  (And there’s 5 times as many people on various medical forums who share stories of having all this done, and still no relief in their suffering, or even worse off than before.)  None of this is helping with my anxiety.  

The official TMJ site TMJ.org stresses that you should avoid such invasive procedures, and that for 80% of sufferers, the symptoms eventually disappear on their own.  They recommend soft foods, lots of ibuprofen & as little stress as possible as it aggravates the condition.  The pain is compounded because of the anxiety involved, which feeds the disorder & vice versa.  Experts theorize how it comes about—trauma to the jaw, arthritis, a bad bite—but no one knows for certain.  For many, it appears randomly.

I’ve had enough.  I take the first 6 pills from the medpack, and then make a cup of coffee.  Immediately, an enormous, hot pain washes down over my face.  Something is wrong, very wrong.  I sit here, waiting for it to pass.  It doesn’t.  I call the ENT’s office and leave a message that if someone doesn’t get back to me right away, I’m going to the emergency room.  Surprisingly, someone returns my call & says she’s contacted the doctor, who told her “that isn’t a side effect of the medpack.”  RIIIIGHT!  She then says the doctor will be ordering some CT scans, someone will call me when they’re ready to see me.  I ask how long that will be.  She says “I’m guessing sometime next week.”  I tell her nevermind, I’m going to the ER.

I call my sister Shawn & tell her what’s happening.  It’s her day off, and she very generously offers to drive to Pittsburgh and take me to the ER herself.  I feel awful for accepting, but truth be told, I WANT HER HERE.  While waiting for her to come, I pack an overnight bag with shirts and underwear.  Either the hospital admits me or I head home with Shawn for a few days.  I’ve had it, I’m tired of dealing with this alone.

A couple hours later Shawn arrives (and one stressful trip later) we’re in the ER.  Personally I think this is how ALL medical visits should work; they put me into a bed, ask lots of questions, do an EKG, draw blood & pump me with sedatives while the doctor informs me I’ll be getting some CT scans.  (I’m later diagnosed with the dreaded TMJ-TMD.)  I’m feeling a little more clear-headed now, and as this all plays out, my sister (who has remained by my side throughout) makes the case as to why I should consider leaving the city & find an apartment back home.  I admit it, a year ago I would’ve argued why that wasn’t a good idea, but now the idea couldn’t please me more.  I felt both relieved & fortunate to have my sister there, to know someone loves me that much, and that I don’t have to be so alone anymore.  

The hospital released me that night, and I did go home with Shawn & spent the next few days sitting on her porch swing with a very sore jaw & doing a lot of thinking.  In that time, we even managed to look at a few apartments, and it looks like I WILL be moving back home soon, the end of September (when my lease runs out here).  I even bought a new couch.   And since returning to Pittsburgh this week, I’ve had 3 sessions with a chiropractor who believes he can help.  To be honest, I have my doubts; I had a calm night last night, but as I sit here typing this now.. nevermind.

I won’t sugarcoat the moving experience either, so far it’s been stressful & tiring as I go thru 20+ years of accumulated stuff while taking frequent breaks to ice my face.  I’m feeling pretty overwhelmed & anxious, but I KNOW it’s the right decision. 

I just want to be be happier & excited about it… and my old self again.  Thanks for letting me share, hopefully I’ll have good things to say soon.