Thursday's Trifecta, 12/15/16

Last Thursday was a triple threat Thursday.

First, I finally got myself into a hematologist for a consultation on my FVLM. Personable guy, much more so than I imagined. The consultation was consistent with most of my interactions with doctors, I show up early (and to my surprise, they had a cancellation and got me in earlier than my scheduled appointment--SCORE!), and I had questions prepared.  

Granted my questions ran somewhat "scattershot" from one extreme to the next, all an indicator that I'm reading up, not only on the FVLM, but the affects of my dietary supplementation on my blood chemistry, as well as my joint issues (which range from chondrocalcemia and borderline gout or pseudo-gout).  

My first question was innocuous enough, regarding how (if at all) my particular blood viscosity might impact or skew my blood chemistry (answer: not at all). I had concerns regarding my RBC and hematocrit being elevated (apparently the hematocrit is skewed because my testosterone was elevated--so at least I got something useful to take my worrying down a bit!). Once I got to the last question regarding the chondrocalcemia in my knees I inquired if I were at risk for hemochromatosis, and it was with THIS question the doctor very sweetly smiled and said, "You need to stop reading." 

Another goodish thing to come of the hematologist's office visit: the weigh in. Mind you, due to pain issues, I haven't gone to my endocrinologist since August (won't see him again at this rate until February), and I've had a lot of anxiety about getting weighed. Due to not walking as much as I normally do, I've felt lethargic and bloated and thinking SURELY I have gained more weight. The weigh in showed that I was within 1 lb of my normal range. I'd like to shed some weight before my February visit with the endocrinologist, and feel a bit confident that it's even possible. I just need to sleep more and eliminate my late night snacking.

Ever since the middle of August, I have been having severe, acute pain issues with my knee, with a lot of referred pain in the form of trochanteric bursitis and pain in my low back. 

On 12/9/16, I started getting Synvisc injections in my (right) knee, and I started walking with a cane, either at work (where it also serves as a prop to convey that I have "issues") as well as on days I'll be walking a LOT. Well, Thursday 12/15 was A LOT.

After the hematologist, I managed to head off to a yarn store, then get a slice of pizza, as my next appointment was at 2 p.m. Even with a cane, by the time the day was over, I managed to have hoofed roughly 4 miles--and not with any additional pain or discomfort (well, pain or discomfort beyond the very tips of my long toe on each foot being tender).

My next appointment was a follow up with the kidney doctor, who I see twice annually for management of my blood pressure. The appointment was enjoyable--always is with this doc.  I had some questions prepared about wanting to get tested for hyperoxaluria, hemochromatosis, as well as cystatin-c. The nephrologist asked me what I thought the first two things were, and when I answered him correctly, and we got to the third item, he said, "I know what you're looking for!" and he immediately added that test onto the blood sample taken at the hematologist's office. 

I also had a question about the possibility of changing my diuretic to something that did not involve thiazides, as I wanted something that was a bit more therapeutic or even preservative of the renal function.  All my chemistry is "rock solid stable" as the kidney guy said, and he made a good argument for staying on what I'm currently on and we'll change it if anything else changes. 

It's exceedingly nice to be treated as a full participant in doing the differential on my health issues.

After the kidney guy, I managed to have some time to make a quick trip to Kalustyan's to pick up some necessary items (as well as a few gifties), before heading to the last appointment of the day.

And the last practitioner I saw to round out my Thursday Trifecta was the travel clinic, where I went to get an update on my typhoid vaccination and get a broad spectrum antibiotic (just in case) for my trip to India which is coming up.  

4.4 miles. 23 flights of stairs. With. A. Cane.

Pain Chronicles: New Pain Doc

On October 13th, I had my initial consultation with the person who is my new pain doc.

Granted, she's not what I would deem "local" to me, it SHOULD only take a half hour to get to her office, yanno, provided I put her CORRECT address in my Waze. And driving into CT now is an exercise in "rage management," my god. The traffic. So between the traffic and my gaffe at the wrong address, I managed to show up a half hour late to the office--and MERCIFULLY, they still managed to see me.

Granted, due to the time constraint, the appointment was thorough and stayed on point, and no room for chit chat. I articulated quickly what my chronic issues are, and what my acute issues are. I provided diagnostic imaging reports for everything, blood work, you name it. I come prepared. No real room for too many questions on my part, but she was able to come to a very quick theory of what is causing the acute issues. She was able to do in about a half hour what the previous (SHITTY) pain doc couldn't manage to do in a year's worth of visits, and come to the conclusion that the hip problems are the result of some injury or instability to my knees (which isn't a wild goose chase, as I have taken two very bad tumbles in the last ten years).

A follow up appointment was scheduled for 10/24. We discussed some sort of injections, possible cortisone for the elbow (not my first choice!), trigger point injections of lidocaine in my neck and shoulders, and if the insurance would approve it, hyaluronic acid in my knees.

The appointment on 10/24 went as planned. The shot in the elbow was guided by ultrasound imaging, and I was watching on the screen as she did the injection. Which, I've heard horror stories about cortisone injections, and while this was not "pleasant," it wasn't the worst possible thing I've endured.

Next up were the trigger point injections. She started between my shoulders and worked her way up my neck, working quickly and without any real reaction from me, with the last shot to be pretty much behind my right ear. Once the last shot was done, my stomach churned a bit, and I started to feel disconnected like I was entering some sort of vacuum. Before I knew it, I was on my way to passing out.

Fortunately, I recovered quick, and I also had a therapeutic massage scheduled with her therapist, immediately after the appointment. And immediately after that, I went across the hall for xrays of my hip (which I cc'd my chiropractor).  

She sent me on my way with prescriptions for an MRI of my right knee (which I had done 10/22), and I need to go in for an arthrogram this coming Friday, which I am not looking forward to, as they will be injecting contrast material directly into the capsule of the hip, and doing an MRI.

I see my chiropractor tomorrow night, so I should get all my copies of the reports thus far, as well as get more info from him on his knowledge of what to anticipate during an arthrogram.  Initially I was just going to take a half day off from the office--but I reconsidered, and am taking the whole day. I'm just going to go home after, and nap until physical therapy at 4, and pretty much take it easy the rest of the time.

I follow up with the pain doc for another appointment on 11/11, where I suppose I'll have more shots and another massage. 

At this rate, I hope to be feeling considerably better by the time Christmas is here. I hope.

Pain Chronicles: Kiss-Off Letter to Shitty Pain Doc

Where we left off here was Pain Doc #2, aka Shitty Pain Doc, had me go in for an MRI on 9/6, my chiropractor was in possession of the report of the MRI on 9/8, and Shitty Pain Doc had finally dislodged the thumb from her ass on or about 9/23 when she left the first of many voicemails.

She called me once on 9/23, then moving forward for the following week, she called me TWICE A DAY, EVERY DAY, until 9/30 when she left a voicemail indicating since she's having problems communicating with me via phone, she was going to send me a letter.

Ominously, she sent it certified mail, conveying to me she was tracking this, and was making sure on her end I finally got my report--ONE FULL MONTH AFTER THE MRI WAS DONE.  The letter (such as it was) was nothing more then a copy of my MRI report (which I already had thanks to my chiropractor) as well as her "interpretations" of it which essentially was her copying and pasting the radiologist's comments. This letter was lacking the CHIEF ITEM I WAS SEEKING: The Rx for the MRI of my RIGHT hip.  

I had written the following letter and was planning on sending it to her sight-unseen. I was not planning on going to the Post Office to sign for and take receipt of her letter. I wanted it returned to her, unopened. But part of me was curious if in the end she'd do the right thing by me and send the MRI of the right hip.

But no. I really wish I went with my gut instinct to blow off getting the letter as it was entirely useless to me.

So, I picked up my letter on the morning of October 6th, opened it up (and summarily said a few FUCK YOUS to the letter), and promptly dropped a letter of my own into the mail.  (To date, 11/2/16, my letter has gone unacknowledged on her end. Not that I anticipated a response, but it was so compelling/damning, anyone who actually GAVE A SHIT about their patients WOULD acknowledge it--no?).

For your reading enjoyment, here is the letter, in entirety, with only the personal info redacted out:

Dr. P.,

In combination with the on-going scheduling problems I have experienced, where most of my recent appointments have had to be rescheduled, then to wait excessively before entering the exam room, and wait even longer to get my issues addressed,  I feel it is germane to share my snapshot of the last six weeks:  

·         8/19 Appointment ; Judy called to reschedule.  (Note: This was a day off, and I had other appointments that day and built my day around YOUR schedule.)

·         8/24 Date of Rescheduled appointment: TWENTY MINUTES prior to my appointment time, Judy called to reschedule YET AGAIN. Neither an apology nor reason were provided.

·         8/25 I arrived  five minutes early (because I value YOUR time) to then be made to wait FORTY-ONE minutes above and beyond my scheduled appointment time, which then put me back in my office by 5 p.m.

Due to all THOSE delays, plus the fact I was going on vacation over Labor Day weekend, the earliest I could get my MRI (of LEFT HIP) scheduled was eleven days later on  9/6.

·         8/29 (WHILE ON VACATION) I called your office (IN ACTIVE PAIN) regarding an Rx for an MRI of the right hip. I was informed to call back on 9/7.

·         9/6 I had the MRI and had presence of mind to CC my chiropractor.

·         9/7 I called your office AGAIN, re: the request of an MRI of RIGHT HIP.

·         9/8 I saw my chiropractor, who provided me a copy of the MRI report.

·         9/23 I get a nebulous/vague voicemail from you, “Sorry I missed your call.” (This then begs the question: Which call were you returning? 8/29? 9/7? Why did it take 2-3 weeks to return my call?)

·         9/26 – 9/29 Two voicemails a day, every day from you, yet no mention of the MRI of the right hip which I requested.

·         9/30 Final voicemail indicating you would be communicating via mail.

·         10/5 Received your letter, which did not contain an Rx for the MRI of right hip.

As of today’s date, October 6^th, it is now six weeks since my appointment with you, and I am no closer to getting my pain issues resolved. Additionally, I feel confident that even if I were to have taken any of your calls, it would only serve to provide me more delays in getting the necessary imaging done to finally address the pain in my right hip.

Time is an important, valuable commodity for all of us, and despite the courtesy I have shown you as a professional, by showing up to my appointments on time (if not early), that same measure of courtesy has not been reciprocated.  Additionally, I require a certain level of responsiveness, which also has been inconsistent. As a result,  I will be changing physicians. I would like to thank you for your efforts on my behalf and wish you well in your practice.

ETA: Dr. P. never reached out to me after receiving my letter. Characteristic of how she operated. Sadly.

RLQ Another Diagnosis Dismissed

During last night's visit with my GP, we were discussing a few things, and I stated how I was still experiencing the RLQ pain, and I asked if he could examine me for a possible inguinal hernia, afterall the issues I've had with impactions and straining, it's *possible.* Doc was "game," and examined me, and well, we're ruling out the hernia.  And I asked if we could get an MRI of the area, which he declined. Perhaps my new pain doc might consider doing this.

Back to square one!  

Hurry up and wait... 10/13 is the appointment with the pain doc. 

ETA: In 2018, I finally got an answer about the mysterious RLQ pain. I was seeing a gastroenterologist due to hitting age 50 and that's the age you get a colonoscopy. 

NEW DIAGNOSIS: When I had my bypass and they punctured my abdominal wall to get the surgical equipment inside, they must have knicked a nerve. 

The gastroguy showed me the film of my colonoscopy, and everything is healthy and pink in my pipes. Each of my concerns and questions: cecal volvulus? Negative. Walking appendicitis? Negative. Malrotated mid-gut? Negative. 

So while it's setting my MIND at ease to know nothing more serious is causing the pain, it still is PAIN. And luckily it doesn't happen every moment of every day. But still!

Follow-Ups & Fuming

For starters, this was the result of my ACTH stimulation test in August:

$475 for the doctor's office visit PLUS $400 for the ACTH stimulation test later...The only conclusion we came to was "White Coat Syndrome." Given everything else going on with my body and my hormones, we wanted to see what else was going on chemically--I'm still angry about the 2OGTT in January--we SHOULD have tested for so much more. And there's no way that I will allow any doctor to run another glucose tolerance test on me. I still feel my endocrinologist should have known better, after all, HE IS THE EXPERT, RIGHT?

So as far as all things endocrine--I am coasting on through until October, when I get my blood work done again, with my next appointment being November. 

Next item on the list is PAIN. Yep. Still in the trenches, fighting this fight. And it's not the usual, baseline bullshit pain of my various herniations, adenomyosis, spondylolisthiasis I, etc, either. 

Starting LAST AUGUST, that is to say, AUGUST 2015, I was experiencing rotator cuff pain and epicondylitis on the right side. The issue was so hot and angry, I had no idea I had pain on my left side. And only once the pain in the right elbow and shoulder started to resolve, did I realize OMG PAIN ON LEFT SIDE.    And after the physiatrist I had at that time in 2015 left me hanging over a long, painful Labor Day weekend, without any real resolution to my pain (and after BCBS declined the pain patch he prescribed), I had to find another physiatrist QUICK. And I did. Maharajah consulted "The Best of Westchester," and suggested I seek out this doctor for a consultation. And she was good, for a short while, and it all depends on one's definition of "GOOD."

This is all to say, she's "good" if/when I finally DO get my whopping ten minutes face-to-face with her. However, it has become ARDUOUS to get those whopping ten minutes with her.  Arduous, because nearly every single appointment I have scheduled with her has been met with a phone call the day after scheduling, with the office needing to RESCHEDULE. EVERY SINGLE APPOINTMENT. 

Let me reiterate that in a font size more appropriate:  

THAT OFFICE RESCHEDULES EVERY. SINGLE. APPOINTMENT. 

EVERY. SINGLE. ONE!!!!

Every single delay, by extension, delays any resolution to my pain.
Every single delay, by extension increases my pain--adding to my pain by way of ADDITIONAL AND UNNECESSARY STRESS.

August 19th, I scheduled three appointments that day. Usually if I burn a sick day, I try to jam as many appointments as I can in that day to maximize the time off. The appointment I scheduled with her office was in the dead center of my day. The entire day was built AROUND THIS APPOINTMENT.

And the inevitable happened: They called to reschedule. "We need to move the appointment to 8/24." 

And on 8/24, a scant TWENTY MINUTES before my rescheduled appointment, they called me to RESCHEDULE the RESCHEDULED appointment. I was huffy, I feel justifiably so, and clarified, "So let me get this straight, you are rescheduling an appointment which was already rescheduled?"  Unflinchingly, the secretary rescheduled me for 8/26. 

It was at this point I realized this is not a one-off type of thing, this constant need to reschedule on their part. This is a sign of one of two things, or possibly a combination of: Piss poor management on behalf of the secretary; and or the doctor having a God complex where the time and needs of her patients are secondary to her own schedule. It was at this point, I realized I need to find a new physiatrist.

So, in pain, I walk the 1500 footsteps (yes, I Helen Keller'd the shit out of my footsteps!) to get to the office with five minutes to spare. Zero courtesy given. No call ahead of time to say the doctor was running a bit behind and perhaps I should plan to arrive 30 minutes later. No courtesy. And I was made to wait an additional FORTY-ONE MINUTES BEYOND my scheduled appointment time.

I got my ten minutes. She did her exam, and I'm convinced in the process of doing the exam where she insisted I try to lift my leg, that I tore something. I got my MRI for my left hip and my Rx for more PT, and I was on my way.

Only problem now was, by the time I got back to my office, it was now after 5 p.m., and too late to schedule that MRI. And given I was going to be traveling, the earliest I could get that MRI scheduled was ELEVEN DAYS LATER, the day after Labor Day (9/6).

It also should be noted, while I was away, I called the doctor's office to see if she could fax over an Rx for an MRI of my right hip and left elbow, so I could arrange the MRI appointments, and I was informed by the secretary the doctor is away, and I should call back on 9/7. Which I did, and nothing happened. No call, no nothing.

Fortunately, I had the forethought to CC my chiropractor on the MRI. I saw my chiro on 9/8, at which time, he gave me my MRI report (tight crop here):

However, the doctor who wrote the Rx for the MRI has been MIA. No call, no nothing. No give a shit or courtesy dispensed. 

It was at this point, in possession of my MRI report on 9/8, that I found a new doctor, granted she's not in town, so it's inconvenient for me to get to this office, but it's within a 30 minute ride of my home or office. It's DO-ABLE.  Appointment scheduled, and thanks to me typing about this NOW, I realize, I need to download the new patient forms and get those filled out in anticipation of my initial consultation on 10/13. And yes, 10/13 is still roughly two weeks MORE I have to wait it out and power through; however, it's the definition of insanity to continue to do the same thing and expect a different outcome--In this case, I won't give this doctor one more moment to rob me of any MORE time. I've given her ample opportunity to care for me--and it's obvious, she doesn't care---regardless of how charming she is.

My point here is, if my chiropractor was in possession of the MRI report on 9/8, so too, was my physiatrist.  So when does the physiatrist FINALLY get around to giving a call? LAST FRIDAY, 9/23--SEVENTEEN DAYS AFTER the report has been sitting on her desk.  She leaves these vague messages, too: "Sorry I keep missing your calls." So obviously, the twat of a secretary never let her know WHY I was calling. No comment made about future MRI, no commentary on the report. NOTHING OF VALUE IS LEFT IN THOSE VOICEMAILS. I neither have the time, energy, nor give-a-fuck to keep playing this game with her.

When her call came through on my cell phone at 9:20 on 9/23, I disregarded the call, and it was dumped immediately in voicemail. I deleted her voicemail without listening. I then removed all her calls from my recents, and then I blocked her from calling me on my cell. She has now attained Fredo Corleone status in my eyes.

So now she's been calling me on my desk phone at work.   And when I say the doctor has been calling--this week she has been calling me TWICE A DAY EVERY DAY, leaving the same stupid vague message. 

At current writing, we are now THIRTY-THREE DAYS after that rescheduled RESCHEDULED appointment, and I am no closer to getting my needs and pain addressed. And I know I am filled and fueled with spite and rage, and can power through until 10/13, knowing full well, I cannot roll over on my right side. This is fucking up my already fucked up sleeping habits.  But whatever, it's another one of my "imagined" issues (said for the benefit of sociopaths everywhere who think I'm a hypochondriac). 

I better click PUBLISH and get this out into the internet before the doctor starts cycling through calling me again.

Pain Chronicles: About That Persistent RLQ Pain

I've been experiencing some NEW dimension to my plethora of pain issues. This time on my left side.

Chiropractor and physical therapist have been on the task both trying to figure out the causes. Given so many things going on in the vicinity, at first we all thought it was related to the L5/S1 herniation, the Spondylolisthesis I, possible adhesions from the adenomyosis. They both have said the psoas and iliopsoas are involved, with a possible nerve compression/radiculopathy.

And then yesterday, the light bulb went on in my head. I reminded myself of the persistent RLQ pain, which was idiopathic, or so we thought, as nothing popped up on any of the MRIs or ultrasounds I've had (for other issues).

I thought about how both, this pain on the left (which is somewhat newish) and the RLQ pain, which I have been enduring for years (I can't be precise about how many years, but let's just say I feel confident it has been since my gastric bypass in 2011).

It's entirely plausible that the psoas pain on both sides is due to straining to move my bowels, from either constipation or the occasional impaction. 

I find it interesting that my chiropractor and physical therapist have been able to isolate that it is a muscle involved, and I find it sad that my GP (who is a gastric guy), as well as my endocrinologist (who regularly palpates my abdomen), neither of them have come to this conclusion, and as a result, I have spent years in unnecessary, additional pain.

*ETA: My (now former) GP, poo poo'd my pain, and didn't even bother with a colonoscopy, which I had to wait 2 more years for, to find out what the source of this pain was. He's no longer my GP. No Regrets.

And In Other News

So about the pain issues I was dealing with, which cropped up at the end of the summer? Where we left off in THAT narrative, in a fit of agony and frustration, I changed physiatrists, and got an Rx for PT, which I started about a week or so before Thanksgiving 2015. 

I was going roughly for 2x a week from November until last week, and the physical therapist was incredible. He did myofascial release and other deep massage of the area near my herniation, which helped immensely, and I was on an exercise program to help strengthen up, related to the subacromial bursitis and the epicondylitis.  

My follow-up visit with the physiatrist is next Monday, and I hope to get an Rx for PT for the herniations in the low spine. The physical therapist was INCREDIBLE.

Up until the hypoglycemia drama, I was taking 1000 mg of evening primrose oil to help with prostaglandin health and inflammation, and I do believe it helped me immensely; however, before we figured out the nature of the hypoglycemia, I pitched my supplements out of fear I was contributing to the problem. I got the green light from my endocrinologist to resume taking the supplement, so that makes me happy.

Everyone needs a hobby, and I guess one of mine is figuring out how to maintain and manage THIS CONVEYANCE, my body I've been given, to get through this thing called life. It'd be easier if it came with an owner's manual like for a car. So instead of "10,000 mile maintenance check up," it'd be helpful to know that my fourth decade on Planet Earth would be so rife with shit I'd have to navigate.