My-oh-Myo-Inositol

As I mentioned in a previous post about a supplement my endocrinologist recommended to me (when I outright refused to go back on Metformin), I'm going to give myo-inositol "The Old College Try."

Of course, he doesn't make dosing suggestions, which would have been incredibly helpful, and online sources say you can take up to 4 grams daily, relatively safely.  

So I did some preliminary reading, and decided to buy about a 3 month supply of Now brand Inositol--the formulation is myo-inositol. 

Last Wednesday, I started taking the supplement. I got the 500 mg capsules, and figure I'll take 500 mg daily, and perhaps gradually work up to 1 gram (2, 500 mg doses).

Wednesday I took the supplement in the afternoon with my 5.5 oz V8 and my usual B1, B2, and B6 supplements. Since Inositol is casually referred to as "Vitamin B8," I figure I should do what I do with my B1, B2, and B6 and avoid taking it with coffee.  Wednesday evening, I felt relaxed, almost washed out, but relaxed (as you'd feel after a particularly taxing day at the office).

Thursday morning, I awoke feeling a bit hung over or strung out, as you would taking an SSRI.  Thursday afternoon, I took the supplement exactly as I did the day before. 

Friday morning, I awoke with that same feeling. Later on in the afternoon, about 2 hours after I took the Inositol, I had that trembly feeling I get if I ate too much sugar. I wouldn't say I had tunnel vision, but I felt particularly nervous, and a bit queasy, JUST LIKE my blood glucose dropping. Luckily a co-worker had some Skittles, which I wolfed down, and once I got back to my desk I hydrated and ate something with protein.

Saturday, I had the brilliant idea to see how much the Inositol impacts my blood glucose. I dug out my glucometer, and decided to do some sticks:

Before Dinner: 85
2 Hours Later:  83

I'm not really sure what to think about this data! And perhaps now that I'm taking a dose before dinner, perhaps I should do a finger stick test again tonight, as well as in the morning, to see if it impacts my glucose upon rising in the morning.

And in the interest of being thorough, I want to see if taking this for a long period of time (1-3 months) elicits anything in the way of noteworthy weight loss.

So for the record, the starting weight I will use for this experiment will be: 205 (the weight at the foot doctor today--a weigh in for which I was not prepared!). 

Notes: Five days into this, and I feel like even a dose of 500 mg, 1x daily, impacts my anxiety levels--I feel very relaxed (almost lethargic, almost washed out), and no problems drifting off to sleep.   

Physician Fatigue, Part 2

I'm so damned fatigued about it all, every thing, I just cannot even muster enough GAF to type this out. But will persevere, if for nothing else, THOROUGHNESS.

Blah blah blah, two other pain doctors leaving me hanging, blah blah blah, rotator cuff, elbow tendonitis, blah blah... new pain doc October 2016, speculations about hip and back pain actually emanating from my knee, blah blah...

I started seeing my current pain doc in October 2016. I've gone through several weeks of trigger point injections in my neck and shoulder, left elbow and even down my IT bands of my thighs. It took us until DECEMBER to finally get around to doing the Synvisc shots in the right knee, which concluded up a few days before my trip to Hong Kong & India. The shots in the left knee commenced the day after returning from India.

In all honesty, I'm about 50% improved over how I was and have felt since 8/18/16, the day that set me into crisis mode. I'll take 50% over nothing, or 50% over how I was feeling. I'm now classified as "sub-acute" or "sub-clinical," however, the doc is making claims that it wouldn't take much to put me back where I was. And it's this claim/justification that I allowed her to give me a cortisone injection in my hip to help with the inflammation to the bursa.  

I'm no fan of cortisone--between my family predisposition to Type II Diabetes, plus my own Dx of Reactive Hypoglycemia, I want as little disturbance to my blood glucose as possible. 

Anyway, I am tired of visits every two weeks. Couple that up with this doctor's habit of "appointment creep," this is what I call it when a doctor insists on being late, making me wait anywhere's from 30 to 60 minutes. I *could* get an early morning appointment, and go to the office immediately after, but who knows if that means I'll be showing up to work a half hour late, or HALF A DAY late.  This makes it frustrating for me on a lot of levels to remain motivated and convinced that there is merit in going to this doctor.

Granted, she's made a huge impact in the hip pain. Huge. But as far as the unrelenting elbow tendonitis? Nothing. Physical therapy has provided ZERO relief. The day we did a cortisone shot in the elbow, THAT VERY DAY it was fine, but I suspect that was more a result of the local anesthetic used rather than the cortisone itself. The elbow isn't what I'd call excruciating pain 100% of the time, however, when the arm is at the full extension, right at the site of the medial epicondyle? OMG I cannot describe the searing pain.  

I've done everything imaginable to treat it:

Topical NSAIDs
Penetrex/arnica rub
Biofreeze
Ice/Heat
Compression
Physical therapy: Exercise
Physical therapy: Myofascial release
Chiropractic adjustments
Cool laser
Ultrasound therapy
TENS/EMS
Braces for carpal tunnel as well as elbow tendonitis
Behavior modification (discontinuing crochet for a full month or more)

ZERO relief.

There are only three other options, and none of which are covered by insurance:

PRP
EPAT
Acupuncture

I'm truly at a loss, and in pain, and I'm not convinced that more trigger point injections are going to help me with the elbow. And I have this prevailing sensation that the doctor is just trying to milk me (by way of my insurance) for as much as the insurance plan will allow.  

Not only am I planning on ditching my endocrinologist, but I'm also planning on "back burnering" my pain doc until June, when I have to resume the shots in the knees.  

I am at the point where I am overwhelmed and feel like a crazy person, just wanting to purge all of this out of my life. 

Physician Fatigue, Part 1

Plenty going on here, not sure where to start prattling...

January provided me yet another opportunity for travel, this time a side trip (three days) to Hong Kong prior to visiting family in south India. Despite being ever-so-careful IN India, I believe I picked up a gut-bug either during lunch at Hong Kong airport or perhaps something I ate on the flight. Within one half hour of arriving home, the diarrhea started, and took close to 2.5-3, plus two different courses of antibiotics (bactrim first, flagyl second) weeks to resolve.  

On an upnote, from beginning of the trip until current writing, I managed to lose 13 pounds, with 6 of the 13 being since arriving home on 1/22.

My Valentine's Day was a double-header: two appointments, 1. Bariatric guy; and 2. Endocrinologist. I must be a latent masochist, because both of these appointments were long-overdue, and both required a weigh in.

Bariatric guy seemed happy enough with my results, though of course pushing the idea of getting more active (which is something I am working on, first by getting a handle on my pain issues--see another post regarding this), and second by finding a pool that's local and has a schedule conducive to my work schedule.

In keeping with the previous appointment with the bariatric guy nearly 18 months prior, he seemed fixated on my symptoms of depression, and was too quick with expressing an interest in writing an Rx for phentermine or wellbutrin or... well, you name it. Each Rx promising magical weight loss--I've sworn off "the junk" since my bypass in 2011, and choose to manage my depression (or is this just my personality?), such as it is, in ways that are unique and suitable for myself and my needs/lifestyle.

The visit with the endocrinologist left me with the inescapable awareness that perhaps our doctor-patient-relationship has come to its natural conclusion.  

Last year, there was the issue of the two hour glucose tolerance test he should NEVER have performed. A test which had the potential to either leave me in a coma or dead, and just because neither of those things happened, this does not negate how dangerous that test was for me. Even my bariatric guy said, "He should have known better." Indeed.

Then this most-recent visit, with me showing (according to his records) an 8 pound weight loss, plus all my blood chemistry (minus my uric acid and my DHEA sulfate, both are elevated) ALL MY blood chemistry was pristine. No. Not just pristine. FUCKING PRISTINE.  I even showed my labs to a friend who is an MD and she showed it to a colleague (who is in integrative medicine) who said she has TEENAGE patients whose blood chemistry isn't this perfect.

So, 8 pound weight loss, plus pristine blood chemistry--what is to complain about?

Well, two things:

(1) For starter, the Endo informed me that despite the weight loss and the pristine blood chemistry, he wants to put me back on Metformin. Yes. A diabetes medication, despite the fact I am not diabetic, nor am I even BORDERLINE. See also: PRISTINE BLOOD CHEMISTRY.

He promised magical weight loss, and commented briefly on it helping inflammation--but nothing further, nothing conclusive, and no studies on PubMed were referenced.

Of course, I balked. The blood chemistry doesn't indicate I'm even remotely borderline for it, and my weight loss, all things considered, I cannot see where he justifies this. And I refused, and inquired if there was a supplement we have not explored or considered.

Long story short, I am incorporating myo-inositol in my daily regimen. He suggested it, but did not suggest a dosage. 

(2) Then there's the sordid matter of coin. I am a long-standing, established patient. I have been seeing him 3-4x a year for going-on-13 years. Each and every time there has been an increase in his office fees (he does not participate in insurance), there is no discussion ahead of time, perhaps when I am scheduling my next appointment, that the fees are going up. Each and every time, I am informed when I am settling up during the current visit.  His office fee now, I am ashamed to say, is $540. I remember 13 years ago, I paid close to $600 for just the consultation--and the office fees went from mid-$300+ on up to $540 where it is currently. 

I'm a state worker, and I'm not rich. And I've come to the point where I can no longer financially sustain going to this doctor. Not only the economics of money, but also TIME. Four times a year--that's a lot of visits, perhaps two visits more than is necessary.

I am in the same position I was in last January--left with the prevailing awareness I need to change doctors. Last year's OGTT was a red flag, and I rationalized staying on with this doctor given the amount of time and money I have invested. But now, the notion of him trying to strong arm me into taking a chemical that did nothing for me, and of course, being shaken down to the tune of $540 for each visit now, has left me feeling ... I don't know exactly how I'm feeling. It's complex. Vulnerable, foolish, angry, and at a minimum, I feel as if I can no longer keep my trust in this doctor. 

It might seem ageist, but he's in his mid-80s (to be honest, I thought he was closer to 90 or over), and perhaps I should just see someone else.

He touted his son-in-law being a "big deal" at a hospital system where most of my other doctors are, and his son-in-law is an endocrinologist too (though his focus I think is diabetes--and I want to go to someone who is an exceptional thyroidologist if such a thing exists). And given that the particular hospital system participates with my insurance, it's very alluring to think of spending $15 a copay, perhaps twice a year, versus what is now $540 for four times a year.   

But before I can even have the discussion wherein I ask for his blessing for me to have his son-in-law be my endocrinologist, I have to schedule a thyroid sonogram and FNA for the multitude of nodules on my thyroid.

This is the year I am downsizing. As much as I love my neurologist who I see for my migraines (which also seem to be managed and less frequent now), I want to consolidate doctors. I also see a neuro-ophthamologist for a weird collection of cells on my optic nerve, so if a neuro-ophthamologist can manage both concerns, all the better. 

I've hit my saturation point with this scenario and others, and am dedicating 2017 to minimizing and consolidating what doctors I can. Running hither-and-yon from one doctor to the next is not a lifestyle I want to perpetuate.   

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.

Almost 6 Years Out: Adventures in Post-Op RnY Blood Chemistry

I had my RnY bypass in 2011, and ever since then, several things have been weird. 

Over the past five almost six years, on occasion my RBC and Hematocrit would be a bit high. Next blood tests, back to normal. However, over the last year (so the last four blood tests, my RBC and Hematocrit has been high, a few points outside of normal range. Couple this up with my hereditary Factor Five Leiden Mutation, I'm always vigilant about minimizing my risks for clots, DVT and stroke. 

Three months ago I discontinued my iron supplement to see if that impacted anything. My iron levels all remained normal; however, my RBC and Hematocrit are still on the high side.
Additionally, my blood pressure (though treated with medication) hasn't really gone down all that much (not that it was super high, while medicated either, but I really want to get my bp down to 120/70, and before/after my bypass, it has remained around 138/80). My elevated bp is treated with an ACE inhibitor.

Another weirdness is, I've been watching my uric acid, for signs of gout. My normal is around 5; however, without changing ANYTHING, my uric acid on my last test jumped to a 6.3--I think a 7 is actually entering the realm of gout.

Up until about a week ago, in addition to a prenatal gummy multi vitamin I take (it doesn't contain iron, but does contain b12) I was blasting myself with KAL brand sublingual b12 spray, which contains 2500 mcg of b12 with each spritz. I was in the habit of blasting myself with two spritzes each day for a total intake of 5000 mcg daily.

For the last week I've been researching this, and managed to find some useful information on the topic, and I really feel that the nutritionists who counsel us as part of the surgical pre-screening process etc, should really be more well-read on the supplementation, especially since they all seem to tout the same top four items: iron, calcium, b12, and d3. Yet, I do not recall if I got any specific information about WHICH specific formulations are best for post-oppers, as well as dosing (the only thing I recall being specific was 2000 mg of calcium citrate daily).

Anyway, the Mayo Clinic's website provided some good information on the risks of b12, so, here are the caveats for b12:

1. If you have a blood clotting disorder--see a specialist to find out how much b12 is too much for your purposes. EXCESSIVE b12 coupled up with a blood clotting disorder could be dangerous.
2. If you are hypertensive and being treated with an ACE inhibitor, speak to whomever is treating you for your hypertension to find out how much b12 is too much for your purposes.
3. If you have elevated uric acid or actually have been diagnosed with GOUT, talk to whomever is treating you for your gout to find out how much b12 is too much--as too much b12 can exacerbate gout flares.
4. Not to sound alarmist, but excessive b12 can carry a cancer risk. How much is too much? I'm still looking into that! But this is just one of many articles regarding elevated b12 as markers for elevated (certain) cancer risks in legitimate medical journals:
   https://www.ncbi.nlm.nih.gov/pubmed/14636871

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.

Struggling To Peel My Orange

Most days, my skull is a bowl of alphabet soup, chock full of words forming haikus, prose, as well as other mundane observances and articulations; however, this morning, the soup bowl that is my noggin was full of nothing but a bevvy of Qs and Xs, insufficient to formulate even a basic idea of what I wanted to discuss with my analyst. 

I felt like a sinner who is clearly slacking, going to confession without much truly worthwhile (or even sinful) to confess. Is this progress, or am I just too depressed to talk about (ad nauseum) the things that continue to chap my ass? Am I in denial? Or is this ACTUAL progress? 

Everything is holding its own until mid-August when we do a crazy test on me. The Great Silence/my persona non-grata status continues without change. Work still sucks, but is a means to an end. I feel inert, yet not necessarily stagnating. I feel as if this MIGHT be progress, but I'm neither moving forward nor retreating backwards. What is this?

*ETA: I always viewed my therapy sessions as difficult to start, just like trying to peel an orange, it's always that first little bit that is tricky, but once you get started, it gets easier. Sadly, this must have been my subconscious self trying to tell me to find a new therapist.

Appointment(s) Recap

Just a bit of an update on what's going on here, which is to say, not a whole helluva lot is going on here.

After January's crisis, which brought about the latest diagnosis of reactive hypoglycemia, not much else has been going on here.

Yesterday brought with it routine doctor visits. 

First I visited my gynecologist, which was a straightforward annual exam. Uneventful. Thankfully! Love him, we bond over food. Surreal in a way to be carrying on a conversation about me making sourdough and him making pizza, conversation transpiring of course through the duration of my pelvic exam.  

Second appointment was with my renal guy, routine blood pressure check up. We chatted about restaurants (and while waiting for him in the exam room, I hopped on Opentable to make a reservation at the place he recommended six months earlier. He was receptive to my ideas about taking niacin, which (as I put it) "...could potentially ameliorate a lot of my issues with proteinuria, hypertension, the kidney cyst formation, as well as help with cholesterol and potentially slow down possibilities of macular degeneration, as well as help with prostaglandins and inflammation." By the time I was done with my schpiel, he already emailed an Rx for niacin to my pharmacy. It's nice to be taken seriously.

Third appointment of the day was later on and with my therapist for a special treat of FACE TIME, as our sessions usually take place on the phone due to time and geography, and since I was in the city for the other two appointments and couldn't make my usual early a.m. phone in session, he was able to fit me in around 5:30 and it was an interesting chat for sure.  

There's more existential angsty related bullshit going on and I'm hating myself for being critical, albeit HONEST in an unvarnished truth kind of critical about some people in my life, I just don't think it's productive to rehash it.

Though, for the first time I was able to admit to someone (someone who I don't think judges me, and to be honest, there was no risk in telling her this as she doesn't know my family or co-workers or whatever) but. I was raped about 12 years ago. No further data will be provided about that.

The Struggle Is Real

Whatever. I'm just not satisfied with pretty much everything going on in my life. But here on this blog, I'll just try to stick to the health or physical shit.

For nearly a month, I have endured food related anhedonia. Food, whether eating or creating it, has always brought me joy. And in the last, nearing-a-month, it hasn't.

I'm pretty much hungry all the time, and equally turned off and bored by food, too, if that makes any sense at all. Nothing trips my trigger, and furthermore, I don't feel satisfied.

I wouldn't complain if I managed to lose weight, which, I don't know if I have or haven't, as ever since the drama in January with the glucose tolerance test, and the new diagnosis of reactive hypoglycemia, somehow I managed to pack on an additional five pounds I cannot seem to shed, so let's just say I'm reluctant to hop on the scale. 

I feel like my surgery has failed me. For starters, there was the promise of having mesh installed around what was left of my stomach, and turns out that never happened. And I thought after the surgery, it would impact the leptin/ghrellin and I wouldn't feel hunger--well that's bullshit too. On top of all this, the RH diagnosis. I'm just not happy.

Then we decided to try to buy life insurance, and there's been one delay after another from the insurance company, as they believe I'm diabetic, which I'm not, which then sends me down the rabbit hole of feeling insulted that they are implying I lied on the intake evaluations etc, which I didn't. They asked, "Are you diabetic?" My reply was NO. Not at any point in time did they ask me if I were hypoglycemic, which is NOT the same thing as diabetes. 

Whatever. 

I'm feeling more than a bit MEH these days, unresolved shit at work, me struggling every damned day to stay motivated and to try to just MERELY MAINTAIN what weight I've managed to remain. My mood these days has somewhat bottomed out too.

Anyway, I'm still alive, still kicking, still fighting the good fight. I don't see the endocrinologist until August (thank heavens), and I see my kidney doc and cooter-ologist in June, when I'll also see a friend for lunch too, I hope.

Beyond that, I'm in a holding pattern. 

What is love?

Love is deciding to have my gastric bypass, so I can be the healthiest ME for my husband. The surgery happened after nearly a decade married, a decade of him harping on me about my health, and a decade of me tearfully wondering if the harping was a sign of love or control/abuse.

Love is my husband willingly, without me asking him to do so, take care of me, committed like feeding a baby bird, every hour an ounce of trout from my favorite Persian place, an ounce at a time, every hour I was awake that first week home from the hospital.

Love is also the daily blood thinner injections, which he did so masterfully.

Love is also the enema he had to administer that one time, 10 days post-op, but really? I think he might have enjoyed that MORE THAN A BIT.

It has been five years since then, and I cannot think back on this without getting salty.

Perhaps he was all along and I didn't see it through all that self-doubt, but ever since then, he is the shining diamond in my crown.

The Adventure Continues: Pizza

Today I did a follow up visit with my physiatrist, and after the appointment, considering I walked eight blocks there and there's a great pizzeria nearby which is too far for a regular type of thing, I walked an additional block out of my way to get a slice (with chicken and bacon on top).

As this is all new to me, I'm still curious about the chemical stuff going on if I eat certain foods (i.e. the only times my glucose dropped markedly was eating 1/2 a grapefruit or eating a piece of rum cake which contained 25 gm of carbs. So pizza was still an unknown entity to my glucose reads and response.

With that in mind, on a whim, I jabbed myself at work and here are my results:

Pre-pizza: 86
2 Hours post-pizza: 104 

So of course, I'm confused, somewhat pleased, but still confused! I was expecting a drop and instead, it jumped.

Note: I only ate roughly 1/2 to 2/3 of the slice, and started feeling regretful and glassy-eyed. 

Note To Self: Glucose Readings

Even though (at the moment) I don't have to test myself daily moving forward, I'm going to plunk down the images which are my readings.

No More Hard Pricks & Questions Left Un-asked

Ordinarily the short string of words, "hard pricks" would be enticing; however, it succinctly describes my difficulties in obtaining that elusive, optimally sized blood droplet for my glucometer. However, my fingers, blood, or circulation all are conspiring against me.

And after two weeks of this little ordeal, when I finally have figured out a routine (involving a moist heat pad on the hand right up until the pricking), my endocrinologist has informed me I no longer have to test out.

The last two weeks have been overwhelming for me. And I know the lack of finger pricking does not mean I no longer have an issue. Oh, it's still there. But I will manage it as I have all along, and now with more awareness of what exactly is at hand, and be a bit smarter (especially about booze).

And given how overwhelmed I am, and knowing that post-prandial reactive hypoglycemia is not diagnosed off the OGTT, I am not prepared to jump through yet one more firey hoop: the hyperglucidic breakfast test, to know with 100% certainty, yes, in fact, this is the thing I have.  Because to be honest, PCOS, Syndrome X, and the ever-increasing number of thyroid nodules I have, is enough of a collection of endocrine issues with which to deal (on top of everything else going on). 

Next up on my TO DO LIST is yet another thyroid sonogram (and possible BONUS! FNA!) scheduled for 3/30. I'd say that's enough for now--isn't it?

Note to self: Hyperglucidic Breakfast Test

The more I read, the more inconclusive I think my 2 hour OGTT results are.

Considering my endocrinologist is taking his time replying to my emails (odd for him, actually), and he's not answering everything, especially the million dollar questions of: 1. What should my target be; and 2. How long must I continue to stick myself? I'm holding off on asking the question of the moment: Are we going to do a hyperglucidic breakfast test to confirm the suspected Dx of post-prandial reactive hypoglycemia?

Sticking a pin in that thought and slapping it here, as a reminder for myself.

Note To Self: Glucose Target Range

Screen grab from today: 

http://www.niddk.nih.gov/health-information/health-topics/Diabetes/hypoglycemia/Pages/index.aspx

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.