Tuesday, November 5, 2019

You may not be hearing much from me for awhile…

A couple days before my last post, I called UPMC Mercy Hospital and said I wanted to see a doctor about this facial pain that’s been going on since the day after my kidney surgery (nearly a year ago).   The woman on the other end said “Dear, that’s not how it works—you need to contact your PCP.”  

I said “Ma’am, you are my PCP.  Mercy treated me so kindly after several kidney stone attacks last year, I called UPMC Health Plan and asked if I could make Mercy Hospital my new PCP.  They said sure.”

The woman on the phone said “Isn’t that the nicest thing… alright, let me get your name & number, I’ll call you back!”  

She did an hour later, and told me to come in on Tuesday.  My new PCP would be Dr. Bhukari. 

Later when my friend Danielle called, I told her what was going on.  She googled my new PCP and said “She’s a first year resident”.   I said “Oh no!”   Danielle said “No, that’s a good thing!   She’ll probably pay close attention to everything you tell her and go out of her way to help!”   I wasn’t sure what to think, but Danielle turned out to be right on target.

On Tuesday I caught a bus downtown (gosh I love public transit) and getting there earlier than expected, walked about for an hour on Wood Street, Fifth Avenue & Smithfield, reminiscing about the decades I spent downtown working, the men’s shops and bookstores I used to visit (all gone now), the years of lunches and occasional happy hours with coworkers. 

For someone who grew up in a rural community, I loved working in the city, feeling a part of things... I don’t now.  I really miss those days sometimes.

I caught a second bus to Mercy Hospital, had my weight & blood pressure taken, and was scooted into an examination room.  Soon a very petite Indian (rather, Pakistani) woman in a white doctor’s coat entered the room, smiled & shook my hand.  My God, she doesn’t look much older than my 15 year old niece.   She said “Hello Mr. Morris?  May I call you Douglas?”  I said “You certainly can, Dr. Bhukari.”   She said “Oh please, call me Marvi.”   I said “You certainly can, Dr. Marvi.”    She laughed and said “Right away… I like you!”    That’s exactly how I felt too.

bukhari-marviDr. Marvi, who’s on a mission to find out everything wrong with me

She explained she was indeed a first-year resident, but she’d be reviewing my case with the attending physician.  She then asked what exactly was going on.

I said “Before I begin, I feel it’s important I give you my backstory… so I don’t get sent on another medical merry-go-round.”  She said okay and opened a small notepad to begin writing. 

I told her I first developed TMD in 2016, my dentist sent me to my PCP, who sent me to an ENT, who gave me a steroid pack which sent me to an ER, they in turn sent me to an endodontist, who sent me to an oral surgeon who said it wasn’t advisable to operate.  I got some physical therapy, then sat around in misery for 7-8 months before it healed on it’s own.

She said it sounded like a pretty traumatic experience.  I told her all was good for the next 20 months, until I had a series of kidney stone attacks last November and the urologist wanted to operate.  They did a laser lithotripsy, a 2-3 hour procedure, and put in a breathing tube while I was out.  I woke up the next morning with my face in a lot of pain; my TMJD had returned.  I KNEW this could happen, I even warned the doctors beforehand.

Dr. Marvi said “I’ve never worked with a TMD patient, but I do know any surgery involving oral intubation can bring on the affliction.”

I told her I’d been suffering with it for the past 11 months, waiting for it to heal.  Instead, it seems to be going in the opposite direction.  I took Advil & Montrin for months (before realizing it was doing more harm than good), wrap my face in moist heat wraps & ice packs daily, but the relief is minimal. 

The first time I had TMD, I was able to eat fairly regularly after a couple months.  This time around… just the opposite.  I ate at the start, but stopped eating most solid foods a couple months ago, it just became too painful.

Also, this time it’s not just the swollen muscles in my face, but it’s in both sides of my head, squeezing me like a vise.  I’m also dealing with ‘burning mouth syndrome’.   It’s all a hot mess.  

Dr. Marvi said “I see you’re 25 pounds lighter than your weigh-in last November.  I’m guessing that wasn’t intentional?”   I said no, but I know I needed to lose the weight anyway; one of the perks of having TMD.   She said she’d be reviewing everything with the attending physician, then asked if she could take some pictures of the inside of my mouth (with her smartphone??) and gave me a cursory examination.

During the exam, she said “Douglas may I ask you a very personal question?  Do you wax your legs?”  I laughed and said no, all the hair fell out several years ago.  She squeezed my calves then said “I know it’s not your reason for being here today, but in 2 weeks we’ll be doing a complete series of bloodwork.  I suspect you have hypertension and are pre-diabetic.”   Oh dear.

We talked some more (she asked if I was in a relationship—no, she asked if I liked cats—yes) then left to meet with the other doctor.  When she returned, she said “We’re going to put you on 1000 mg of Naproxen daily for the time being, and give you something to take before bed.  It’s an antidepressant called Nortriptyline, but it’s also used to manage persistent pain from affected nerves— it’s a cumulative treatment, so it may take a couple weeks to be effective.  I’m going to have you come back in 2 weeks so we can check on your progress… and do your bloodwork.  And 2 weeks after that… and 2 weeks after that.”

After thanking her, I headed out to the checkout station.  I asked the nurse “Will I be getting a new PCP everytime I come here?”  Dr. Marvi suddenly appeared from around the corner.  She said “No Doug!  I am your PCP now!  For the next 3 years!”   I smiled and said okay.  She then said “Your next appointment, I will be away doing a clinical study so you’ll be seen by another resident.  If you don’t like them, don’t be discouraged because I am your doctor now." 

I said ok, thank you.  My stomach rumbled and the nurse at the station asked if I was hungry.  I said yes and she said “You should visit the cafeteria, they have a ‘hot dog bar’ set up today.”   Before I could respond, Dr. Marvi said “NO DOUG.  I don’t want you eating all those nitrates or sodium.”   Ok, Dr. Marvi.   

(After she left, the checkout nurse said “You’re very lucky to have her as your new PCP.  People here are singing her praises.”   Good to know.)

And so, for the last week I’ve been taking those naproxen twice daily, which take the edge off—sometimes, and that nortriptyline before bed (which usually zonks me out).  I wake up, do the heat, ice & meds all over again.

It worries me though—that naproxen is pretty heavy-duty.  I can’t take it forever.

I will admit, it’s been rough.  Particularly this weekend, when I thought I’d tear my hair out.  Sunday afternoon I was sitting here holding a couple of frozen gel-packs to my face and feeling a lot of anxiety, wondering if this will ever end.  I decided to pray.

“God… you know I don’t believe in the whole Bible church thing.  Or in any supreme being, for that matter.  The last time I prayed was 15 years ago, when I begged you to spare my mom.  But now I’m praying for me.  I know I’m being a hypocrite, but please help me out, I need a little bit of relief here.”

The phrase “God helps those who help themselves” immediately sprang to mind, and I got on my blog here and looked up a couple TMJ-related posts from my first time with it in 2016.  I found one about having a custom occlusal splint made, and it made me stop & think for a second;  I’d almost forgotten the thing.  (I DO remember it costing me $300 for the fitting and the appliance.)

splints2019The fitting took place the first week of January, 2017.  By the time it finally arrived in mid-February, my jaw was starting to feel better;  I think I only wore it for a couple weeks.   (It separates your upper & lower teeth by a 1/2 inch, taking some pressure off of your rigid, spazzed out masseters.)  

Dr. Marvi HAD asked me if I owned a night guard, I told her I had a couple—a cheap, rubbery one from Wal-Mart that hurt my gums, and an expensive custom-fitted piece that was too tight on my teeth.  I haven’t worn either in ages.

It’s been almost 3 years, I wonder if the pricey one is still wearable?  I found it in it’s little blue container under my bathroom sink.  I rinsed it under some warm water and snapped it onto my upper teeth.  Ouch, it’s tight alright—but unlike the cheap rubber one, doesn’t chafe my gums.  After a few minutes, it felt a little more comfortable.  

I also detected a small (but noticeable) drop in pain in my jaw muscles.  It couldn’t have been more than 2 or 3%… but it was something.   

So I wore it to bed, and was surprised when I awoke and it was still snapped in place.  (That $5.00 green thing has never lasted thru a single night; I always awoke with it in my hand or under the covers.)  After brushing my (very tender) teeth, I thought “what the heck” and put it back in, wore it most of the day. 

And I think that’s just what I’m going to do for the time being—besides wearing it at night when I sleep, I’m going to wear it as often as possible during the daytime too. 

It’s impossible to eat with, but I can drink liquids with it in and that’s pretty much what I’m living on right now anyway.  It’s also difficult to talk with, but it’s not like I’m able to do much gabbing outside of email or on my blog here.

I’m just desperate to get my old life back.  I miss my family, my friends.  I miss eating real food.  I miss having a reason (or being able) to smile.  Wish me luck.