Tinkerin' und Tinklein'

Reading up and trying to find the optimal daily dosage for alpha lipoic acid to help improve/diminish my proteinuria, and hopefully lower my BP in conjunction w/my ACE inhibitor.

Found this article re: The Impact of Lipoic Acid on Endothelial Function and Proteinuria in Quinapril-Treated Diabetic Patients With Stage I Hypertension: Results From the QUALITY Study, and it looks promising:

Conclusions: In diabetic patients with hypertension, QUI reduces blood pressure, proteinuria, and improves endothelial function. Moreover, this effect is strongly potentiated with a combination of QUI and ALA. These results may attenuate the progression of vascular pathophysiology seen in patients with a combination of diabetes and hypertension.

The cliffnotes:  The article listed that out of the 40 patients participating in a double blind study, the patients who were dosed with the combination of 40 mg of Quinipril and 600 mg of ALA daily w/a resulting protein decrease of 53.5% in a 24 hr collection.

For years, I've been taking 250 mg of ALA daily, and I'm considering bumping this to 500 a day.

Just now sent out an email to my nephrologist and my endocrinologist. Endo will no doubt give me a speedy reply, and I may have to wait until Tuesday's appointment with the nephrologist to get his response.

Hurry up and wait.

End note: Still waiting on reply from the kidney guy. Endo, with Swiss predictability and precision, emailed me within 24 hours with three words: GO FOR IT. 

No Time For Witty Titles Today.

Perspective is everything. One of my assorted syndromes right now: Proteinuric hypertension = pre-eclampsia (if I were pregnant), which by extension = ZOMG EMERGENCY SRS BIZNESS BABBY ON BOARD! Proteinuric hypertension for a non-pregnant person doesn't seem to muster up enough ZOMG! Yeah, gee. 

My head hurts like a mother effer and I worry daily if I'll have a stroke and won't be able to wipe my own butt, but screw me for not having a BABBY ON BOARD! Not feeling sorry for myself, merely illustrating the schism of care (as well as overall give-a-fuck) from folks medical or non. Power through I shall. Even if it means powering through on a second by second, molecule by molecule basis.

And while I do recognize that there is a physiological difference between a pregnant woman vs a non-pregnant woman, I can honestly say it sucks to have the identical syndrome, yet receive no real urgent type care for this.

Advice from friends is nice, especially from friends within the medical profession. However, when those same friends dispense the clinical information (which I already knew, thanks to Dr. Google) and those same people actually have at a minimum ONE CHILD (or more), and no acknowledgment of the grief (yes, grief, infertility, and for me now, the certainty I shall never have a child of my own flesh and blood EVER), it just perpetuates the divide, the herd thusly: "Us" vs "Them," meaning breeder vs non-breeder. 

I'm sure I'll eventually get to the point of accepting this. Eventually. And I suppose until I officially hit menopause, acceptance will be slow coming. So, it IS unintentionally callous, along the lines of someone saying to a grieving widow that the death of her husband is nothing compared to the loss of a child. Loss is loss. Grief is grief.  As I've said before, this is a loss, a grief, for which no one else knows the right thing to say, except, save for someone who's trod along this path themselves. 

And the medical nutshell version of this scenario is:
While I have the same syndrome that would be Dx'd as someone who is pregnant (proteinuric hypertension), as of this moment, it's idiopathic, no known cause, and we're rooting out possibilities which range from "nephrotic syndrome (which scares the piss out of me--literally and figuratively) to Cushings, to a pheochromocytoma, to who-knows-what-else. While I may not be pregnant, the notion of staring down the barrel of a shotgun "loaded for bear" with the possibility of eventual kidney failure and DIALYSIS, scares the fuck out of me. The notion of having a stroke, scares the fuck out of me. So really, pointing out why it's a more dire Dx for a pregnant woman vs a non-pregnant woman is really a moot point, and only makes me relive my existential loss all over again.

Curve Ball

Okay. I didn't see THAT one coming. Got the blood work from my endocrinologist, from the collection on 10/14/13.

Things for me to worry about:

• Plasma Renin ACT, LC/MB/MS 8.54 H (Potential marker for Nephrotic Syndrome, or Cushings) 
• Calcitonin 7 H (Possible marker for thyroid issues along the lines of Medullary Thyroid Cancer). 
• Melatonin NONE DETECTED.

Secretly hoping that maybe the blood tests were skewed due to supplements I take, wondering if the turmeric capsules I take for anti-inflammatory reasons, the omega-3 fish oil, hyaluronic acid, or perhaps that week I took omprezole for a few days are the root cause of this.

On an upnote, re: nephrotic syndrome they recommend a low protein diet, and suggest 1 gm of protein for each kilogram. For my weight it roughs out at about 80-85 gm of protein daily, and I feel I'm usually under that amount by 10-15 gm daily. (Trying to see how much, worst case scenario, this might impact me if it IS nephrotic syndrome. And to be honest, the idea of kidney failure and dialysis even remotely on the horizon scares the piss out of me. Literally AND figuratively.

ETA: The calcitonin reading might be a false-positive type result, given I've been taking coconut oil supplements for nearly a month. I started taking it hoping it'd help moisturize me from the inside out (my scalp is notoriously dry and flaky and itchy--perhaps this is a symptom of the nephrotic syndrome?). Little did I realize it actually affects the thyroid. I've since disposed of the last supplements in the bottle. I was planning on discontinuing anyway, given I didn't feel any great improvement with my scalp in taking it. One less bottle on the shelf, so I feel I'm ahead of the game. Let's see if this changes the reading for the next blood test.

Annus Medicus Horribilis: Hurry up and wait

Hurry up and wait. That's pretty much what this week is. See my chiro and perhaps my gastroenterologist on Saturday. And an appointment with the cardiologist and follow up w/the nephrologist on Election Day.  Wondering what THAT will involve. Perhaps if I wore a harness monitor for 24 hours, we'd be able to pinpoint precisely the times of day my pressure spikes (I suspect it spikes or there's an event while I sleep, which is what's causing me to wake up in the middle of the night).

Headaches persist. If it's not a menses related migraine, or related to the herniation at the base of my skull, then there's this wild card type debilitating headache. Tired of losing precious days of my life to pain. 

Hurry up and wait.

Annus Medicus Horribilis: No New Dramas, Part Deux

So yeah. About that proverbial "other shoe?" Yeah. It dropped.

It was premature to say "no new dramas" in the previous post. Monday night I got the call from the gastroenterologist regarding the possibility for a colonoscopy before year end, and on Tuesday I got an email from my nephrologist that my protein is high in my urine and he might want to biopsy my kidneys. So ix-nay on the o-nay ew-nay amas-dray. 

I follow up with my gastroenterologist in a week or two, and when I do I'll spitball an idea to him about possibly having him coordinate with the nephrologist, as well as the NP at the bariatric surgeon's office, and see if I can get an upper and lower abdominal CAT with contrast done, rather than go through the renal biopsy and colonoscopy. I can hope, can't I?

Had a good session with my therapist today about everything, and even against my initial reluctance to do so, discussed what happened with the sociopath. How I handled everything seems to be an improvement over how things like this would destroy me for days or weeks (or months) after. It made me appreciate that I *do* in fact have some pretty wonderful friends. 

Intentional cruelty is a trigger point for me, and one from which there is no turning back. Once that line has been crossed, I'm done. I go into insulation mode, and do the fade to black, distancing myself until that person is in obscurity. Only in this case, it was a full on verbal assault. No gradual fade. It was a verbal strafing, a strafing for which I am glad I have witnesses.

So rather than turn my anger inward towards myself, being angry that I was stupid or gullible or my judgement was dodgey to befriend someone who turned out to be someone capable of intentional cruelty, I reminded myself that THAT same judgement was also responsible for the cultivation of some pretty lovely, loyal friends. As I said to the therapist, it was all useful information. Unpleasant? Hell yes. But useful. He asked me how did I end things? I replied, "I took away his power. I stopped talking." 

Honestly, I don't know how much of what transpired was really his doing or if it were all brought about by booze or drugs. At its core, I am sure, resides the nugget of truth. That he IS truly a cruel person, and the booze/drugs just exaggerate it. No apology, weak or strong, has been forthcoming, which also is useful information in and of itself.

Annus Medicus Horribilis: No New Dramas

Yesterday I hit the trifecta. Well, two doctor appointments + one telephone call. All reasonable outcome.

Renal guy was first up in the a.m. His office was hopping and though my appt was at 10, I didn't get in to see him until roughly 11:30. No problem. I provided a sample, pressure was taken (in several different positions. Sitting up and then at a recline). Weight seems stable. Taking me off the CCB and just doubling the ACE inhibitor. Follow up at the next state/federal holiday coming up, which is the same day I go see a HTN specialist. I'm really hoping between these two guys, they'll get my BP in line, and end these horrible headaches.

Endo was next. Given the wait time at the renal guy, I didn't have time for a lunch beforehand (just as well, as endo likes to weigh me, and despite my weight loss, I still get anxious about hopping on the scale--especially since I've been on the CCB, as it's making me retain fluid). Despite feeling bloaty, I'm maintaining. Really wish I could dump off another 15-20 lbs, but it's going to take a bit of sweat for that to happen, I believe.

No new dramas. Mercifully. But I did mention to the endo how I've had so many things get scoped and scanned recently, that I"m really hoping to hold off on a colonoscopy/sigmoidoscopy for as long as possible, calling it my FINAL FRONTIER to be conquered.

And wouldn'tchaknow it... my gastroenterologist calls last night with the sonogram results, which for most intents are inconclusive. Appendix fine, which we suspected. No tears or anything obvious intestinal. Even the ovarian cyst rupture we hypothesized turned up zilch. The only thing that he did remark upon was the adenomyosis, which he doubts is the cause of the ACUTE pain. And yep. you guessed it, he casually suggested I have a colonoscopy just to rule everything out. So my heart sank a bit. But it's not urgent,  and as he called it a rainy day project, but one that he wants done before year end. 

So I find it super fitting to end my shitty "annus medicus horibilis" with a colonoscopy. We're shooting for *ahem* the tail end of December for this.

So, thanks to the thyroid goose chase...and the granuloma goose chase... and the RLQ goose chase... all the rainy day projects I had lined up to tackle this year have not been done:

*Follow up sleep study to get my settings on CPAP adjusted;
*See a hematologist regarding the FVLM & find out how my prothrombin may/may not be skewing my labwork;
*See a neuro who specializes in pain, to better manage things and help me keep moving, and moving forward.

Ever mindful that suffering is a part of life, and glad that all of these things, as tedious as it's been to follow up and stay on top of have all ended up being nothing life threatening issues. But more importantly, glad that my burdens are mine, as I wouldn't want anyone else's. We've all got our own shit with which to deal.

Another Sociopath Bites The Dust

Dear friends of mine, IRL, who know me beyond my text on a computer screen, feel free to not read this, as it just reiterates some things you already know. The rest of you, feel free to read on.

I am not perfect. I have awareness to know who and what I am. I have a healthy enough ego to say this.

One of my main mantras or guides I've used in life has been: Say what I mean, mean what I say, and try not to be mean when I say it. Oftentimes, if I think that what I am about to say could potentially be hurtful, I remain mute.  I don't know if I'd be bold enough to say "It's the buddhist way, to try to diminish the suffering of myself or others," because well, I don't like labels, and so much of my way of being and philosophy straddles several belief systems. All I know is, ultimately, at my core, I neither want, nor  take any pleasure in, being cruel to others.

Granted, my journey to good health has been a long one, and has had its ups and downs, like everyone else's life has. It's not a special journey, but it's mine. And even if I might (INTERNALLY) judge someone else's journey or the choices they've made, I try to limit whatever negative comments I might have on the topic. THIS IS WHAT SEPARATES US FROM THE REST OF THE ANIMAL KINGDOM: IMPULSE CONTROL.

So imagine my surprise when someone who is on their own journey back to health, back to mobility, back to some measure of independence, battling pain and their own demons, someone who puts themselves out there as an enlightened Buddhist, posts a comment so utterly callous and judgmental on my wall on FB, I simply could no longer remain mute.

In sum, this person suggested/alleged that I surely have up to three different phobias or mental illness, implied I am over sharing (when he's got videos on YouTube documenting a bed sore on his ass--wherein his testicles are on clear view, and another one video documenting a urinary catheter that is not emptying), and also implied that I'm imagining what I'm going through.

As he made the allegation publicly on my wall, I decided to respond publicly on his wall, in a thread wherein he's discussing "gaslighting" and sociopaths. I did not sugar coat anything. He doesn't get a free pass because he's a quadripeligic. I've kept quiet long enough out of respect for that. But he's shown his true colors to me to be just that, plain and simple, a sociopath. 

I summed it up: a sociopath goes out of their way with the intent to be cruel. If the intent isn't there, then you're just a carelessly cruel dillhole.  And so the shitstorm conflated, and burned out rather nicely.

My response to, "Hey you offended me" were met without self-examination and without even weak apology along the lines of, "Hey, I'm sorry that was not my intent," but was met with more cruelty. He called me a liar about something very trivial (alleged that I ever used the word psychiatrist to describe my therapist--who IS a psychotherapist, but is a LCSW, NOT a psychiatrist), then started attacking my friends (both on my wall, as well as the walls of friends whose privacy setting is set to public) with misogynistic ad hominems. Apparently my posting topics irritate him.

Not at any point in time did he privately message me, which he still has the ability to do so, if he were to decide to apologize (not that it matters at all at this point, the damage is done, and well, I AM DONE with him, as once trust is gone, it's very rare to ever truly re-establish it). Instead, his intent was to insult and attempt to humiliate me.

This online friendship started in October (of 2011) and so in October (2013) it shall end. I had the very best of intents when I reached out to him after seeing some of the videos documenting nursing home neglect; however, here it is two years later, and really no change in his status quo. So perhaps all the videos were a vanity project, or a way to ensnare otherwise good-intentioned folks into a trap wherein he could be an empathy vampire, sucking out the good intent, feasting on the good will and attention.

So what took two years to culvitate, ultimately, in the end, took roughly 24 hours to destroy. 

There's a Buddhist theme along the lines of "take that which is useful, and discard the rest." In the end, that was my only recourse. And thank you "dear," you made it an incredibly easy decision to make.  Have fun with the delusion, "dear."

ETA: For posterity,  a bunch of screen caps from FB to document the dipshittery. 

*I decided that since he decided to make allegations on my wall, publicly, so my friends could see it, I'd post my rebuttal on his wall so his friends could see it. To date (Jan 2014 now) there are no further updates since October, so I don't know if he's still posting, or if I'm just blocked from seeing current content. Not that it matters for my purposes. Here are the screencap rebuttals and ad hominems:

Also: In the end, I found it somewhat amusing, in a very pathetic LOL kinda sick way of laughing at someone's cluelessness, that Ralph had issues with my candor or my sharing, alluding that I might have been OVER sharing. Be that as it may, I may be the queen of TMI; however, one thing is abundantly clear: I have never photographed my ass and slapped it up on YouTube for all the world to see. 



Good times. 

Again. Good luck with the delusion, Ralph. And PS: You have emerged victorious in Pain Thunderdome.

Annus Medicus Horribilis: Ultrasound Done... Hurry up and Wait

Nothing new to report; however, the ultrasound was done early this a.m. So I'm hoping that my internist will contact me with the results. I'm fairly confident NOTHING is going to show up, nothing out of the ordinary, and that either the pain was a fluke due to the fiber in the Arctic Zero, or perhaps it was an ovarian cyst that went 'splodey. 

Made for a bracing morning... bracing, like taking an icy cold shower, that type of bracing. When I scheduled the ultrasound I had no idea there'd be an intra-vag part of the diagnostics, and also I had hoped my onset day would not be until TOMORROW.

Yep. Trans and intra-vaginal ultrasound on a heavy flow day. I don't recommend this. But fortunately it was first thing in the a.m., and the technician was neither disgusted (outwardly) or nasty about it.

Hurry up and wait.

Annus Medicus Horribilis: Best Laid Plans... Blah Blah Blah

I *was* hoping that once summer was over, so too, would be the never ending supply of doctor's appointments and medical wild goose chases. I guess at this point, I'm striving for the end of 2013 being the end of my Annus Medicus Horribilis.

Over a month ago, my internist put me on a calcium channel blocker as an adjunct to my ace inhibitor to hopefully help my unresolved BP issues, to no real avail. The pressure is elevated, but I've been reassured it's not ZOMG STROKE LEVEL!, but still, given the fact I"m already at risk for clots, embolism, stroke etc due to the blood clotting disorder, I really don't want to tempt fate. Also? The horrible headaches which come out of no where, not to be confused with my menses related migraines. I'm losing days of my life to this nonsense.

And as I'll be at my renal guy at "The Mount" next week (and my endocrinologist who is a few blocks away), I was hoping to squeeze in an appt w/a HTN specialist (also at The Mount) on the same day, but the Universe's Power conspired against me and my best intentions to jam as much as I could in that trip into NYC. But perhaps, this is for the best, because after the summer I had, the result of which I never was able to find enough time to do what I wanted to do and go for a class on a particular crochet technique I want to learn. So perhaps if the instructor is available on Columbus Day, and Election Day... perhaps that will take care of two of the three classes (it's a class of three sessions). Perhaps THIS is how it's supposed to be.

So hurry up and wait until Election Day for me to get any real idea of what's cooking with my ticker. No doubt I'll be there having an EKG, ECG and a stress test. No doubt. Fun times await!

As if that weren't enough, last night I started having acute pain in my RLQ (lower right quadrant of my abdomen). I've had this on and off for the last two years. To date, I'm nearing my three year anniversary--well January makes it officially three years, since my WLS, so that's always a worry for me, that somehow I've injured myself.

Last night I ate (over the course of a half hour) a pint of Arctic Zero, a 150 calorie frozen treat, which I view as a frozen protein shake. It's got about 20 gm of FIBER in it, in the form of chicory etc, and perhaps this might TRIGGER the pain, but there's no flatulence, etc. So I don't really know what's going on. And given that I am about 24-36 hours out from the BLOODY DELUGE which is my menses onset, I also think it COULD be an ovarian cyst. Or it could be a kidney stone. Or something with the cecum. 

I emailed my bariatric surgeon's NP regarding this, and I also called and left a message for my internist to call me back with the thinly veiled "RLQ pain." Internist is a GI too, so that helps me. His first impulse was to say I should have my gyno do a sonogram, and well, my gyno is also at The Mount, and that's logistically a nightmare for me to coordinate everything, and I"d rather do as much diagnostic stuff close to home and save my sick days for WHEN I AM SICK BECAUSE I KNOW I WILL BE SICK. I get depressed at this certainty.

Long story short: As I don't have a fever, diarrhea, impactions or any other thing to indicate an emergency, I've scheduled my sonogram for Thursday a.m. before I head into work. 

I hate being this person, and I am wondering when my depression, bitterness and pain just engulfs me entirely.