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. 

The Latest Development: Finding a Lancet That Works For Me

There are so many things I am feeling right now: anger, discouraged, fear, anxiety etc, related to the news of the reactive hypoglycemia. If that weren't enough, I am incapable of getting an "optimal STICK" with the lancet that came with the glucometer the doctor provided me:

Oh! It's a sporty little meter, and the Delica lancet is ever-so-fine; however, even at the highest setting (5), I cannot consistently get an optimally sized blood droplet for the test strip, which then requires me to do multiple sticks (wasting lancets), and also equals more OWIE.

A friend suggested the lancet he uses, a Relion. So before I trudge on over to Wallyworld to buy it, perhaps there's a way for me to comparison shop lancets. I have no idea what makes his better, and I have absolutely zero knowledge of any variation in lancet gauge from manufacturer-to-manufacturer. 

Yet another issue/event in my life that sucker-punches me, making me actively miss my dad. He would have been my Johnny-on-the-spot, letting me try out lancets and glucometers in his collection, until I landed upon the right one that works for me.

New Development: Post-Prandial Hypoglycemia

Every time some new development crops up, I am reminded that there are assholes out there who think either I'm a hypochondriac or think I'm imagining this shit (and that sentence is THE ENTIRETY of head space I am allocating to that bullshit). 

I'm now five years out from my RnY, and some symptoms I just thought were related to my hypertension (like lightheadedness) and I was experiencing that heart flutter thing, which we've been possibly incorrectly thinking was hormonal (I'm 47).  

Up until last Monday, I had absolutely no idea anything was wrong. I went for a two hour glucose tolerance test (I'm not sure why, though my insulin has been on the low side of normal, so I thought everything's okay). My fasting glucose was 90 (normal!), and after two hours, it bottomed out at 32. However, mind you, after the test? I honestly felt fine. Had no idea anything was wrong. It was only later on when my doctor called me in a panic, did I know something was going on.    

So, yesterday I had to stick myself six times (when in reality I think I should have stuck myself 12 times) as my doc wanted me to test fasting before each meal and 2 hours after; only problem is, I didn't tell him I actually eat roughly six times a day. So I'm sure all the sticks I did yesterday are probably inaccurate.  

We have been doing a differential, trying to pinpoint what it is exactly that's the cause of  me bottoming out with a 32 at the end of a 2 hour glucose tolerance test. So many variables. It could be a combination of things: 1. I was wearing scopolamine patches on my cruise last week; 2. I drink alcohol on an empty stomach; 3. I was taking evening primrose oil, and relora supplements. Or it could be something neither of us considered: an unfortunate side effect from my gastric bypass: post-prandial hypoglycemia.

Prior to all of this, the only indication I knew something was up was the fact I feel like crap eating something like bagels, pizza, or pasta, so for me, since the bypass, I thought it was a normal progression to get away from those foods--so that's how I manage that (I pretty much avoid them). 

I guess all along I have been managing this without my knowledge by eating smaller meals, focusing on proteins, and avoiding a lot of refined high glycemic carbs.  I ate a piece of rum cake yesterday, roughly 25 gm of carbs, and nearly 2 hours later, my blood glucose was 72--so, not perfect, but also not right at the danger zone either I think.   

I cannot help but be discouraged, as I haven't lost everything I wanted (I lost 100, regained 25), and have worked hard just to maintain what I have, and tried so hard not to become a diabetic, and now THIS. 

I'm regimented.  I pack a feed bag for work, and am pretty regimented with eating six times a day, remaining compliant about the no liquids after eating restriction, as well as staying on top of all my vitamin requirements etc.

Thursday was an emergency visit with the endocrinologist, so on Friday, on a hunch I googled post-prandial hypoglycemia and I'm just really dejected and not sure how to handle the news/possibility of this as a diagnosis. When I came home from the doctor's visit, I pitched the suspected supplements in the trash--in full on revulsion, and wanting to avoid any possibility I'd accidentally take them until we figure this out. Sure, not smart money wise, but I always can buy more if it turns out to be a fluke. 

I was hoping after ditching the supplements and avoiding alcohol for a bit (mind you I do 1-2 drinks a week), perhaps we can re-do the glucose tolerance test.   Nearly all of my readings 2 hours after eating have been normal, as well as my numbers when I wake up in the a..m. (Normal for me: 88-91 have been the norm).

So now, I'm vexxed by all this finger pricking, and my blood isn't cooperating. And thinking of never eating again, given how everything seems so driven by the act of eating. I'm fine when I wake up, as my fasting glucose is between 88-91. It's what I put into my mouth moving forward which is posing to be a new challenge.

Feeling dejected, disappointed and wondering why I've been working so hard just to maintain, only to have a new set back.