What is tiny and green and hurting all over?

I've been blogging most of the daily/weekly stuff on #pinkyblog, but since this one is 99% medical, it's going here.

I've had gallstones come and go for decades, sometimes they would just magically dissolve and then come back.  I guess thank goodness for being autism spectrum with a fibro nerve disorder, because I was done dealing with the pain long before a rupture, even though I've been putting up with gallstone problems most of my life. I've regularly passed them, very used to that kind of pain, but this year was really different. I felt short of breath and heart racy with the least exertion that got worse over time, and the worst of the pain referred left, so I was checked for everything imaginable, including pancreatitis and aneurysm. I've seen the pathology report after surgery. I got lucky, my gallbladder wall was only .2 cm even after months of being chronic. My mucosa was still intact, but I was a ticking time bomb this year jammed so full of little rocks and scattered particles inflaming the hell outa the surrounding area.

From the abstract The degree of gallbladder wall thickness and its impact on outcomes after laparoscopic cholecystectomy.
"A greater degree of gallbladder wall thickness is associated with an increased risk of conversion, increased postoperative complications, and longer lengths of stay. Classifying patients according to degree of gallbladder wall thickness gives more accurate assessment of the risk of surgery, as well as potential outcomes."

I honestly cannot even imagine reaching the point of rupture. So many horror stories are coming at me now from all directions about complications that I'm wondering how some of you or your loved ones are still alive. One doctor once called me a canary in a coal mine, aware of my internal environment long before other people normally are, and another told me I'd probably outlive everyone I know just because I can feel every little thing inside me making me a nervous wreck.

Since I've lived with autoimmune flares and resulting treatment wreaking havoc on my immune system, I have a very healthy fear of infection going out of control. I'm not easy to treat because med intolerant, so I confine myself to what others fondly refer to as my bubble world. I still go out and run errands, but I'm super cautious about not ever letting anything touch my face until I get home and wash my hands really good. I've had allergic reactions to simply absentmindedly scratching my lip, and I pick up germs so fast just touching things that I'm usually the only one sick. I've mentioned picking up hand-foot-mouth just from resting my arms and hands on chair handles in a waiting room and not being mindful of touching my hands to my face. I had no other contact with anyone besides my husband for the two weeks prior, and he never got it.

One of my biggest fears is CMV reactivation, because I've been living with a liver condition most of my adult life and possibly even my entire life back to around 11 years old. I had a discussion with a liver specialist one year about aggressive mega supplementation for long periods that I was subjugated to as a child, and it's very possible my stomach bloat and belly pain goes back that far. My liver was already sensitive when I started drinking in my mid 20s and I'm pretty sure I went through liver toxicity after sudden alcohol withrawal about a year and a half later. I've been watched for liver tumors after a ten year stint with lupus meds, and then had a few discussions about autoimmune liver disease after initial CMV infection swelled me up for months, which could actually kill me very quickly if that ever happens. The last thing I want to do with my health is make life harder on my liver.

Most people don't even think about their livers and don't know they live with stenosis for years. I've been very aware since my late 20s because my liver almost never stops sending out referred pain signals, and apparently was able to feel the imminent explosion coming on. I can't tell you what a relief the surgery was after months of pain referring, and after the horror stories I'm hearing from friends and loved ones now about their own and others' experiences with gallbladder emergencies, I'm point blank saying stop blowing yours off before it gets to the point where your life STOPS for immediate emergency rescue after a rupture. That level of inflammation and infection isn't easy to get over and recover from once that happens. That ticking time bomb is snuggled right next to an organ you absolutely cannot live without.

Save the liver! I saw when this original skit first aired. If you cannot view this 3rd party embed, you can see Dan Akroyd's French Chef skit -here-.

I just discovered someone has autotuned Julia Child. 😂

human error, medical records, and making our own decisions

Loving the new centralized medical records I have access to now online. I can see that just before Christmas in 2010 two inches was temporarily added to my height, and right after New Year's in 2011 a hundred pounds was suddenly added to my weight. My highest recorded blood pressure over 4 years was 194/92 and my lowest was 99/66. My slowest recorded pulse of 60 was on Valentine's Day of 2013, so I apparently wasn't a hot date that day. I can also see that my CMV test came back negative for reactivation, but you can see I am a positive carrier.

 

I've been worried about CMV reactivation since I got home from vacation in the middle of May, thinking maybe I got too run down. It hit me a few days ago that part of this weird bloating and pain and super fatigue *might* be the pain medication my doctor had me try last April and then take on vacation in May, which, yes, was a lifesaver, but now that I'm back home I can tell that it's a crutch and taking it every day might be causing some very unhealthy side effects. (I'm always the person who gets the rare side effects, and I seem to be hitting a jackpot this time.)

I was diagnosed with a liver condition called NASH some years ago after one gastroenterologist strongly advised me to stop taking Ansaid, which I'd been on for ten years, so I imagine it could be likely that a similar medication might irritate the crap out of my poor innards. So I stopped taking it, and whadayaknow, my tummy is deflating, eating isn't hurting any more, and my increased heart rate and blood pressure are coming back down. I was feeling so rotten that I even wondered if maybe I had a kidney infection, but I never got a fever or other symptoms for that.

I have to give serious consideration to weighing the pros and cons of meds since I have an inch long spot they watched on my liver for a couple of years, so here we go, time to wing it again, off the meds and just dealing head on with whatever hits me again. Beats living with feeling like I have pancreatitis. If you've ever had that or know anyone who has, you know it SUX. I'll take fibromyalgia and trigeminal neuralgia any day over that and my liver swelling up again.

So now that the big drive to Houston and back is over, I'm back in ASTYM therapy and menu planning around higher protein intake and lots of raw veg and salads, hoping to get past this fatigue wall I keep crashing into. Crossing my fingers that stopping the med solves the problem. Stopping meds has worked wonders in the past.

I don't advise cold turkey withdrawal for anyone who has been on meds for years, and I strongly recommend you don't do it without your doctor's knowledge. I've been through some nasty backlash withdrawals that had me going back for 'rescue' meds, but in the long run, I've been much healthier getting back off meds than staying on them.

Meds are awesome for short term rescues, but when they become bandaids they turn into epic fail, and a body can become so dependent on multiple meds to keep functioning that suddenly cutting them off can result in catastrophic events. It takes a lot of grit and planning to untangle and extricate oneself from handfuls of medications and find ways to get healthy despite being in very dire straits to begin with, but it CAN be done, if people wanna live bad enough. It's too easy to medicate and let stuff roll over you till you finally just die, but either way, you die in a lot of pain. Handfuls of meds do. not. stop. that.

There is a lot of pressure to take medications, and sometimes they really do help. I grew up mostly without doctors, partly a religious or belief choice my parents had, but that was replaced with gimmicks like you wouldn't believe. I still can't walk past certain sections in health food stores without feeling ill and nearly throwing up because of all the stuff that my mom poked down my throat as a kid. None of it cured illnesses, and none of it prevented more illnesses, especially diabetes.

Our bodies are very good at handling problems if we make sure they have the materials they need to do that. Science has already confirmed that good hydration, plenty of good sleep and rest, excellent nutrition, moderate exercise, and finding ways to lower our stress do more good than anything, whether we are on medications or not. It doesn't matter how much you wax your car, if you don't change the oil once in awhile it's going to start wearing down. Likewise, we can put on all the makeup and pretty clothes and lotions we want, but if we're not eating good food and running around half dehydrated from sugary drinks and excessive alcohol, we get gunked up inside and our bodies have a harder time working right. We call that growing old, but I have been reverse aging since I weaned off my meds and changed my lifestyle. No gimmicks.

This is hard, and I'm going to miss my crutch again. It's nice having a few hours a day where I don't feel so rough. But I have to be honest with myself, it's also scary to think I could slide back into that complacence where I pop a pain pill instead of getting up out of my chair to do my stretches and then move around getting a little exercise because I don't hurt quite as badly when I'm moving around. Pills make it too easy to be still. Medications make it too easy to accept less than optimal conditions for my body. One little pill every day is making me lazy and sloppy, and I'm watching all that hard work to better health slip away again.

It's a choice. I don't blame anyone for wanting relief in their lives. But I want to win the game. I'm going to be the one crawling out of the muddy ditch and capturing the other team's flag while the rest of you slobs laugh it up getting wasted. 


My way of whistling in the dark.