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Currently (2023) my most updated blog is everlasing.

Spaz is a useful side blog for sorting other stuff out.

Tuesday, November 28, 2017

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. 😂


Thursday, September 28, 2017

that cheerful Howdy! hasta stop


(copied from original post on #pinkyblog)

I have done my planning, my shopping, and yesterday initiated my original paleo / South Beach / Rosedale health plan combo diet. The only thing I purchased with Rosedale was the book (used, spent under $2), didn't buy anything else or take any supplements, and the rest I just studied online and did on my own.

Back around 2009 I had become desperate and bent my mind around putting together my own health care team. By 2011 I was cleaning off years of medications and lost 50 pounds in 4 months, but it took a lot of research on how diabetes actually works, how 'nutrition' is skewed into the wrong foods by big companies, how to survive without medications by actually paying attention to what I put into my own mouth. It's work paying attention and keeping track, but it's very easy with all the mandatory food labeling we have nowadays.

This is my public trail through healing.

pill phobia at its finest - coming out of the stupor of medication addictions, poor medication management, over prescribing

my problem with healthy food - challenging the healthy grains concept

Holidays With Diabetes- Easier than you think - An easy way to understand what the holidays do to diabetics

Diabetes and Steroid Meds - Surviving steroid treatment for other chronic illnesses and allergic reactions while maintaining control with diabetes

I've come a very long way since I wrote those articles. I've slipped off my own path a bit, regained a little weight, backslid into pain complications and medication problems, and now I'm very tired of 2017 dragging on like this. Time to get my control back.

Because I keep after continual physical therapies throughout the year, I am still not only maintaining function around my home, but keeping up with far more activity than I ever dreamed I could do. I still can't get on my knees at all without destroying them and have almost continual pain somewhere in my body during everything I do, including reclining and sitting, but it's manageable. However, I've lost my grip on that manageable part a few times this year, and I want it back. Part of losing that grip is because I'm slipping on my nutrition planning, and it doesn't take much for the diabetic headaches and slower healing and stomach problems and nerve pain to pop back in my door with a cheerful Howdy!

It's too easy to grab quick and starchy bites on the run because I have high energy young people in my house now. I must menu plan for MYSELF and stick to it. I work around food allergies, so I heavily depend on dairy for proteins, but some dairy has lactose and lately my glucose spiking is worse on lactose because of my new blood pressure pill. So, I bought an extra dozen eggs this week and boiled them up. One boiled egg a day will replace my second cup of coffee with creamer (canned milk).

I also bought bacon. Bacon gets a really bad rap when it's actually much better for you than cookies and cake and pie and spaghetti, especially when you're diabetic. It's easy to cook up a package of bacon and then keep it on hand in the fridge. When others grab a cupcake, I can grab a piece or two of bacon, and later I can use the bacon drippings to cook up a big load of pan roasted brussels sprouts, which are even more awesome with aged balsamic and grated parm.

Guys, I lost 50 pounds in 4 months one year without even trying just doing THAT and stopping when I reached 1500 calories. I could nibble all day and still dropped 5 bowling balls off. It never really hits home how much we carry around until you pick up a bowling ball and go wow, that was IN ME.

Anyway, I reached a point in 2011 where I felt like a skinny fat person, which was really fun for new clothes (got down to an 18), and I would really like to go past that now. I've been in size 20 jeans for awhile and if I'm going to be having difficulty with pain and possible falling (the klutz is becoming strong again), I'd like to be easier for others to help getting back up, knowhutImean? So I bought butter and bacon and eggs and cheese and brussels sprouts and broccoli and lettuce (I love lettuce wraps around chicken tenders!) and stuff like that, and let's see how the rest of the year goes.

I've been hovering just above 200 pounds for months, I wanna break through that. Can I do it? I've never lost weight on gabapentin before, plus I'm back on low dose xanax and still on daily zyrtec. In 2011 I was NOT on meds bossing my weight/water retention around, because I had spent 3 years cleaning off most of my meds and got into physical therapy. We'll see what happens. I do know that I gained weight this year on baclofen and higher doses of gabapentin, so the baclofen is gone and the gabapentin is back on very minimal pain control.

I. Want. This.

click for more fall gifs

Thursday, July 27, 2017

when your spoons feel like 2-pronged BBQ forks

Everything is *ow* and slo-mo while the world around feels spinny and objects magically go skidding miles across the floor into awkward places reserved for tiny limber toddlers. Walking is precarious, a grip on anything solid is laughable, and the only thing holding the pain-induced nausea at bay is the thought of some beautiful coffee just around the virtual bend. Everything will be fine once I get through the first 5 minutes of the daily morning spoonie hangover.

This is your brain on spinal spondylosis complicated with some stenosis, severe fibro, actual notated nerve damage in several areas, and a mysterious 'pain syndrome with psychological factors' for kicks. What the heck, lets toss in a load of every weed and grass pollen imaginable for the summer seasonal allergies thing and pretend it's not developing into a sinus infection with ear pain.

This year has been fun. Look at me, I'm hurtling down the long dip part on the roller coaster, wheeeeee. I have to keep reminding myself that I'm still more functional in many ways than I have been in the last ten years and I'm still at the advantage and have the upper hand on progress that I've made, but reality mocks with OH nonono *tsk* don't you dare forget what got you here in the first place, and then it looks at me like I got caught red-handed in the cookie jar.

My entire nervous system hurts and has been hurting like this for months. It's really rare for me to reach the nausea stage with pain because I am so used to living like this that it's almost just background lawn furniture, but last couple of weeks I'm this close to hurling just opening my eyeballs in the mornings. If I could describe this succinctly, I'd say this is as close to a full body migraine as it gets.

I am writing this down for posterity. I'm not in a whiny mood at all. I'm not feeling pissy or sad or worried. This is a good morning to write it because I'm actually impatient to get back onto the game server and go 'do something', which means I'm having to use actual brain to focus and not just dump.

Here comes super honesty. I'm glad this is happening. Before this crescendoed, I was in a depression rut for months last year. Even feeling much better than this, I was barely able to get past my daily basic chores because I kept face planting into lost time and ennui. This pain grind focuses me, forces me to cope and deal, challenges me to keep up. I like this me. I like that I'm actually keeping up and not face planting.

And since I'm getting to use my brain without the depression in the way (thank you, engaged pain receptors), I'm doing a better job lately with daily planning, list ticcing, lining up my thoughts about things to come kind of stuff. I feel like I'm balancing my days better, helping my family balance better. The last few months haven't been easy around here, and I feel like we're developing into a smooth machine. I like it.

Going forward. Five years ago around this time I was a nervous wreck coming back out public. Four years ago around this time I was a stress mess juggling 2 new grandbabies with a surgery and a huge server move corroding my work goals to powder. Three years ago around this time I was going through more histamine blowouts and on emergency steroid rescues again. Two years ago around this time I was plowing through years of emotional wall backup and processing with my psychologist. Last year around this time I was deep in a game server feeling lost. THIS YEAR- I'm on a self-appointed countdown now. I'm emotionally exhausted and numb and don't care any more about trepidations and what ifs and suddenly #allthethings falling into place and if I really do this, then the whole plan is just rolling itself out now because either I'm that great at pre-planning around unforeseen fails or I really don't give a crap any more and it's just going to happen. I'd say come hell or high water, but Missouri has flooded several times this year and my pain level has become too ridiculous to even describe, plus more people in my house and someone died next door OH I forgot, found out yesterday a kid up the street OD'd on heroin. 18, guys. I've far outlived an 18 year old, and I wouldn't trade all my pain and hardships for one single hit like that. I feel really bad for his family.

Anyway, yeah, that's my day today. My one spoon is a 2-pronged BBQ fork. Just dive outa my way and I won't have to jab anybody over a flaming grill.