Tuesday, September 29, 2020

Illness in the Time of the Apocalypse

 I've been gone from this blog for a long time.  Not because I've been too sick to write but because I started a Facebook patient support group for the housebound and bedbound folk.  I was very involved and curated the group for the first year until it got enough members and the right tone for it to become self sustaining with a great set of admins.  The group is great.  It has over a thousand members now.  

Thing is we have a couple of members that are very depressed because of illness, a couple who are suicidal, one who is suffering from medical abuse/neglect and several others in abusive relationships.  They post constantly and it just drains me.  I hate going in to the group now.  It isn't because of lack of compassion.  I feel horrible for them.  I just don't have enough energy to deal emotionally right now.

For me it has been the ever deepening pool of crap I've had to deal with over the last four years.  I've moved, which was a major energy drain in and of itself.  I can't find a new doctor that will actually help me.  My liver decided to quit working.  I've been fighting to stay on a keto diet to fix my liver and stop gaining weight.  A microburst ripped through my neighborhood and downed hundreds of trees and took out power for a week.  My son was injured in a car accident.  He'll recover but not without lots of PT.  My mom is slowly descending into dementia.  My favorite sister in law passed away from dementia (she fell and severely injured herself and was allowed to pass peacefully).   I had to block my sister again after she posted some anti-semitic stuff that she thought was just anti-vaxx.  And then there is the planet at large.  Trump became president and ushered in the destruction of our democracy, the removal of all federal oversight of everything, and the packing of all the courts with conservative judges.  Covid happened, which prompted my mom and son to move back in with us.  The west is on fire making this entire year seem like a post-apocalyptic nightmare.  Not to mention the killing of POC by the police with no repercussions.  Now people think it is okay to drive their cars into other humans if they are holding a BLM sign and go into stores without masks on even though over 2 million people have died and thousands are left with CFS/ME like illness. WTF is wrong with people!?!  They literally don't care about the lives of other people.  I'm shocked.  Appalled.  Flabbergasted.  I don't have the words.  It is like they are brainwashed.  

Between all the shitposting on Facebook by my fellow townsfolk and family members, the depressing stories in the support group and my own personal hellscape I am defeated unlike any other time in my entire life. My husband really can't grasp what is going on with me.  Why I'm so upset all the time and am constantly in a bad mood.  I feel crazy isolated.  I can't go out because I'm at high risk of dying if I catch covid but people are literally putting me at risk so they have the 'freedom' to go without a mask.  I decided to take a chance Sunday and go to the farmer's market.  There was a lady blocking the entrance putting on a Trump facemask because the market folk wouldn't let her in without one on.  Once I was inside and at a vendor table she came right up next to me and I had to tell her to back away from me.  There was no one else around and she didn't have to crowd me but she did and she didn't care.  OMFG!  In the meantime my husband is out with his friends and family visiting and having meals and now off in CT working and staying in a hotel.  He just might kill me yet.  

I haven't cried so much in my entire life, ever.  I burst into tears at the slightest provocation.  I can't tend to other people's needs at all.  I have a short temper.  I'm just so done with everything.  The callousness.  The heartlessness.  People's individual selfishness and the greed driving the country as a whole.  

But it is really my inability to do anything at all to effect change that is shaking me to my core.  It is all out of my hands.  The elections.  The DOJ & GOP.  The police.  The neighbors.  Covid.  My family. My isolation.  My own illness.  So I cry.  I try to distract myself.  I stopped following the news so closely.  I've been watching post apocalyptic science fiction which is somehow comforting since good wins and the heros figure out how to survive.  I too will survive.  I'll get through this like I get through everything.  It is just a really rough road in between.  

Saturday, February 8, 2020

Food Glorious Food

I have a long and sordid history with food... mostly caused by the diet industry.  I'm fat.  I've been fat since I hit puberty.  For the most part I've resisted dieting but succumbed once in high school and once in the late 80s.  Both times I lost weight which I gained back during the couple of years afterwards which keeps me in line with the science studies on the matter.

Then there is the health side of things.  I knew my body reacted badly to some types of food.  I was raised in the era of Wonderbread and Twinkies.  My mother did her best to put meat and veg on the table for our meals but we were also poor and the good stuff ran out pretty fast.  If we were still hungry jam sandwiches were often the solution. 

When I went off to college, I did the whole vegetarian thing and ate lots of grains, beans and tofu.  Then the new food pyramid came out encouraging us to eat 9-12 helpings of grain/bread per day.  I was like "woohoo!!! I LOVE sandwiches!".  I also learned about hypoglycemia around that time and it sounded really familiar.  Back then it was considered quack science so I didn't get very far with it.

After graduation, I dropped the vegetarian thing out of practicality.  Working full time I didn't have time to prepare food from scratch everyday and restaurants didn't serve anything like the yummy meals available today.  A vegetarian meal often consisted of cheese pizza.

Then the 80s hit and fat became the boogeyman.  This is when I went on my first legitimate low fat diet.  While I initially lost a ton of weight, after eating low fat for 20 years I gained a ton of weight.  I became prediabetic and had heartburn.  I became intolerant to gluten and went gluten free.  Luckily it was before pre-made baked goods so if I wanted something GF I had to make it from scratch which meant no more bread, cereal or pastas.

This is about the time I revisited hypoglycemia and found the glycemic index.  I rejiggered my diet so that I ate low glycemic foods and changed the time of day when I ate certain things.  My energy levels improved but my weight stayed the same.

Once I contracted CFS/ME I learned about the Paleo Diet, GAPS diet and Weston Price Diet.  I decided to combine all three and went on whole foods paleo diet that included the healing foods from GAPS.  While I felt better, my weight didn't budge then I started gaining again.  Over 8 years my weight crept up by ~100lbs and I was now at 322.  At 5'2", I was around 60 BMI. UGH

Then two years ago all hell broke loose with my gut.  I've been having problems with it on and off since the first day I contracted CFS/ME.  I'd go through bouts where I couldn't eat solid food and fat bothered me the most.  Lots of nausea, IBS, diarrhea, etc.  But, this time it was accompanied by brutal stabbing pain in my left side.  I went through a huge battery of tests.  The results were fatty liver and fatty pancreas.  Nothing that explained the ab pain or the 'not being able to eat' problem.  The did find evidence of stomach lining inflammation but nothing active.  I got put on meds. 

Then I discovered that keto is the only fix for fatty liver.  I started paleo again.  I weaned off the stomach meds.  Then weaned off carbs to keto levels.  My meals consisted of protein for breakfast, lots of veg and a side of meat for my main meal and a small protein and fat snack for the third meal.  Weight started dropping off even though that wasn't my goal.

My liver numbers came down.  My blood sugar numbers were good.  I was no longer prediabetic.  I lost 18 pounds.  Then my stomach acted up again and I couldn't eat any fat.  It was back to turkey sandwiches and chicken soup.  I had to go back on the stomach meds.  This cycle happened twice more: keto diet, gut acting up, paleo diet, gut acting up, etc. 

Now I just can't seem to get back in the groove.  I last a couple of days and then cheat.  I use the keto rules to cheat on paleo and the paleo rules to cheat on keto.  I can't quite figure out what has me stuck.  The cycle of diet/gut fail or the fact that I used to be so poor that I often didn't get enough food to eat or my outright hatred of diets/weight control. 

Thing is I felt GREAT on keto.  I had tons of energy; my PEM was drastically reduced; and my brain fog lifted so I could read again.  And my liver was healing!  My doctor did a liver biopsy this year and it came back with no fibrosis which really shocked him.  Even my liver scan number came down by a lot.

I feel defeated.  I feel out of control.  I just can't seem to do this again even though I did really well before.  I managed 2 years the first time I did paleo and 4-5 months with the last year's paleo/keto round.  There is SO much junk food on the market now.  It makes finding 'keto' snacks easy and on bad days it is so hard for me to prep fresh meals.  I feel like a failure.  Like I don't want to get better. 

I want to come up with a food plan but I'm scared I won't stick to it again.  I'll cheat too much.  Right now I'm eating cough drops due to having a nasty upper respiratory infection and I refuse to use the sugar free drops because of the nasty stuff in them.  That means keto is definitely out for now.  I guess I'll start on paleo once I get off the cough drops. 

Maybe I need to get my mind off weight loss and switch to liver health again.  I still have a ways to go to fix it.  My numbers improved but I still have a fatty liver.  I can't make up my mind if I want to do this cold turkey this time instead of my normal easing into things.  Then again my body doesn't do well with sudden changes.  I need to come up with a better plan.  One that is both food and mental. 

Saturday, September 22, 2018

New Research

Nothing available commercially yet.

Scientists discover promising ‘off-switch’ for inflammatory diseases

“The macrophage takes the nutrient glucose, whose day job it is to provide energy, and surprisingly turns it into itaconate. This then blocks production of inflammatory factors,"

Scientists Discover The Root Of Autoimmune Diseases – And How We Can Treat Them

"the researchers dulled symptoms [of autoimmune disease] by suppressing the growth of Enterococcus gallinarum"

Brain's Lymphatic Vessels as New Avenue to Treat Multiple Sclerosis

"the brain and the immune system are closely interacting. When these interactions go out of control, pathologies emerge"

Sunday, November 19, 2017

The Key??

New study indicates that there is a genetic defect that reduces the number of T cell receptors in the immune system which leads to the immune system turning on and not being able to turn off.  This in turn leads to a feedback loop of inflammation, Krebs cycle malfunction, mito dysfunction and immune system activation.  When the mitochondria crap out, everything craps out and it turns into a systemic illness.


If this study is verified, then this is most likely THE cause of CFS/ME.  It is the root of all the other problems.  I'm just wondering if CRISPER could be used to repair the genetic damage and fix this illness once and for all.  A girl can dream.....

Wednesday, September 20, 2017

Leucine and KREBS

This is going to be short and sweet because I don't have time to hunt down the original paper links right now.  Prudential is demanding that I prove that I still can't work again.  Blergh

Davis et al have just shown that the immune system is haywire and the KREBs cycle is broken in PWME.  Their mito are fine but don't behave fine when exposed to the plasma of PWME so something is broken in our blood not our mito.  Our metabolites are also out of whack.

Along comes this article..
Targeting "Broken" Metabolism in Immune Cells Reduces Inflammatory Disease
that discusses how our immune system essentially hijacks the KREBs cycle so it can make molecules to fight bugs (whether they exist for real or not).  This leads to some weird ass biochem going on and of course inflammation.  They developed a new protein that works well in mice and it is similar to Leucine.  (LOL now I remember WHY I bought that huge tub of leucine!!)  Hence, my leucine experiment is about to start.

Saturday, September 2, 2017

A Rare Foul Mood

I don't have them often but when I do.....  they are a doozie.

Warning rant ahead in no particular order.

1) It is a holiday weekend.  A weekend that is supposed to be family doing stuff together.  People are posting happy family pics on Facebook.  So what is going on at my house?  Hubs is out to dinner with his friends.  My sister is off hanging out with my brother.  My mom has been left behind up in the Adirondacks.  And my kid just hopped a plane to Puerto Rico.  So I'm in my house alone on a Saturday evening.  

2) My kid just hopped a plane to Puerto Rico.  Dude!  Seriously?!?  There is a category 3/4/5 hurricane aimed squarely at the island.  It is going to hit wed or thr and you decided that it would be okay to go there.  Idiot!!  I hope he doesn't get hurt or killed for his stupidity.  Why do 20 year old think that they are immortal???  Then again he hasn't seen damage from a real hurricane in person.  Growing up on Cape Cod I've seen plenty of aftermath of small hurricanes and tropical storms.  Houses washed into the ocean, buildings stipped of their rooves, entire coastlines being reshaped, boats being washed so far inland that they are propped up by phone lines.  It is scary stuff.

3) My kid just accepted a job in NYC and will be moving out permanently.  He's spent the last six months being a nomad using our house as a landing strip in between trips to CO to service his client.

4) It is the end of summer and I still haven't been to the beach.  Not even the parking lot.  Not even the town beach at the local pond.  I bought a bathing suit.  I wanted to sit in the water.  Just once.

5) Hubs took extra days off so that he could unpack some more and set up the library/office and the sewing room.  Also so that he could finish up the bathroom and kitchen.  Thing is this requires unpacking my books from my moldy old house.  I've just stopped coughing after a year and a half.  I'm off my inhaler and I've been improving in general.  I don't know how I'm going to react and I'm scared shitless this is going to set me back in a big way.

6) After having some bad milk earlier this week which resulted in two days of nausea, I'm now constipated.  Badly.  Enough that my tummy hurts.  I haven't pooped in days.  Just this alone is enough to put me in a bad mood but combined with all the other shit and I'm surrounded by piles of boxes again and I'm sitting in the house alone on a holiday weekend worried that my kid is going to die in a hurricane.   Hence, I'm in a really foul mood!!!!

Friday, August 11, 2017

The Four Letter Word

I hate typing the word 'diet'.  I hate being on a diet.  I hate that society wants us to be a certain weight.  I hate that people hate me just because I'm fat.  I hate that I'm fat.  I hate being fat.  I hate trying to find 4X clothing that I don't hate.  I hate not being able to move easily.  I used to be lithe.  I used to be able to get up from a chair or even the floor easily and smoothly.  This sucks and it is why I'm on a diet.  I'm tired of getting stuck in pieces of furniture or having to go to all fours to get up off the floor.  Admittedly some of this is due to CFS/ME but even on my good days I can get stuck.  Having a waterbed that is underfilled also doesn't help.  I have to roll out of it since I don't have the strength to claw my way out.  Okay so maybe not all of it is due to me being huge....  Having CFS/ME sucks too.

But I digress.....

I'm coming up on the two week mark.  Things are progressing well.  I've lost a few pounds.  I'm still fiddling with the software tracker, cronometer.  I ordered a scale for me that is goes up to 450lbs.  I dug out the scale for my food.  I've been very good at logging food, supplements, sleep duration, sleep quality, symptoms and activities.

 Fiddling with the software has been an interesting experience.  I'm almost obsessed with it but it's paid off.  I actually watched the training vids and learned a few tricks that aren't intuitive.  I've figured out how to put my own foods in if they aren't already in the extensive database and even put in recipes and it does all the math for me.  [If you decide to go with this software, just note that typing in brand names will bring up an entirely different list than typing in generic food names.  "yogurt" will get you a totally different list than "Brown Cow yogurt" and the brand name item often won't show in the list if the generic term is used.  Very weird bug if you ask me but anyway...]  Being able to actually see the macro ratios as well as calories has allowed me to adjust in real time what I choose to eat each day.  I've cut way down on carbs and increased my fruit & veg intake.  I keep trying to increase protein but I don't seem to make the minimum almost daily.  It is only when I go over my calorie count that I eat enough protein.  Sigh...  Right now I tend to make the fat goal with difficulty, carbs always go over and protein under.

I set the tracker up for minimal activity/sedentary with a half pound per week weight loss.  This allows me a baseline of 2070 calories a day assuming I burn 2320 calories doing nothing.  I found I tend to go slightly over the 2070 mark but I'm happy if I keep it under 2320.  Of course the few days leading up to the start of my period went higher and higher.  I could always eat a horse the week prior to my period.  I'm STARVING!!  Now that my period started the hunger is abating and I'm settling back into a 2000 calorie day.  If I'm having trouble with this amount of food I can't imagine how many calories I was eating prior to starting this diet.  Geesh...  no wonder I've lost weight already.

My official weigh in is Saturday morning but of course I couldn't wait.  Right now the scale is on the same floor as me so I don't have to go upstairs to use it.  So, I keep weighing myself every morning.  I always gain and then lose water weight around my period so I'm still not sure what my stable weight is yet.  My starting point was the doctor's office at 306.5lbs, which I confirmed when my new scale arrived.  This morning I stepped on the scale and I'm down to 303.6lbs already!!!  I'm only supposed to be losing a half pound a week and I've already lost 3 and possibly more!  Looks like I might be losing 2 pounds per week which is fantastic!  Maybe after this Saturday I'm moving the scale very far away from where I usually tread in the house so I won't obsessively weigh myself and keep it to once a week.

I am scared that this whole thing is going to devolve into an eating disorder.  The last time I went on a serious diet back in 1992 I almost ended up with an eating disorder.  Luckily I got pregnant and was forced to start eating again.  Then in 1998 I read "What if Women Stopped Hating Their Bodies" and started eating what I wanted, when I wanted and as much as I wanted.  It helped me get over the "you're not allowed to eat that" voice in my head.  It helped me stop craving junk foods.  I ate french fries so much their allure went away for me.  I now only eat them if they are very good fries.    This wasn't the case prior.  They were forbidden foods so I MUST eat them.  It was as much a defiance thing as a food thing.

After that point, I started noticing that some foods made me feel better and some food made me feel worse so I started tinkering with what I ate and when I ate it.  I discovered the glycemic index and based my diet on those principles.  I moved to a more organic whole grain type diet.  I finally managed to get my energy levels on an even keel.  I used to crash after lunch and want to sleep under my desk.  Now I had energy over the course of the day and no longer wanted to sleep mid afternoon.  Then I developed a gluten reaction out of nowhere and had to go gluten free.  I did quite well for years but just couldn't lose weight so I decided to exercise more.  I was strong, fit, had great numbers for the doc and I was fat.  I was a fit fatty as they are called.  Anyway....

After getting sick I did a Paleo Whole30 and then ate Primal for two years.  I never lost weight on this diet contrary to all the Paleo weight loss miracles out there.  However, this healed my guts sufficiently to let grains back into my diet.  Things slowly devolved and I was eating lots of carbs at every single meal.  I would eat a half a pizza for dinner without blinking.  A bowl of pasta for snack.  Breakfast sandwiches, lunch sandwiches.  etc.  Now I'm having to retrain myself yet again.  I knew I hadn't been eating enough veg & fruit.  I knew I was eating too many carbs.  I just didn't realize how much.  This experiment has been good for me.  I both loathe it and happy that I'm losing weight at the same time.  I'm learning things and that always interests me.  

I do wonder how long I'll be able to keep this up?  It will take a year to lose a hundred pounds if I don't plateau, which is an impossibility.  Ideally I should lose 150lbs so I'm looking at another two years of dieting.  UGH  I would just be happy to get rid of my double chin and fit into my size 20 clothing again.  I might even get off the CPAP machine!!  Now that would be something to celebrate!