It’s Been Five Years Today…

It still hurts so much that my dad is gone. I’ve adjusted as best I can, and yet it’s still a rollercoaster at times. This is the exact post from his Caring Bridge page that I kept to keep family and friends updated….the only changes are for specific identifiers.

First of all, I’d like to thank all of you for your prayers and support during this time.   I know the visitation will be the hardest as I see the body of someone who I not only had the privilege of calling my dad, but the joy of calling my friend as our relationship with me as an adult became one of mutual respect, and often a lot of fun. 

On Saturday, dad seemed to have a really good day- D, F, and B visited (B brought him a Mc D’s hamburger and strawberry shake, and he ate half of the burger, and drank all of the shake, which is the most intake at one time I remember in nearly a month.  His esophagus was feeling better, and he sounded tired (normal for rehab), but lucid and nothing seemed amiss.  The timeline on the rest of this is a bit off as I look at it , but this is pretty much how things went. 

Then came Sunday morning.   I got called at 5:20 a.m. from VM to tell me that dad was having horrible abdominal pain- something that had been an issue  on and off since early March.   They got him to the bedside commode, and he became very pale, with a dropping blood pressure- which was not his usual.    He was transported to S Hospital’s ER, where I found him to be in a state of delirium when I got there (I followed the ambulance from M Road where I met it by the VM entrance).  His awareness of time, place, what was going on (and why things had to be done for testing) were all abnormal at least part of the time.   He was very dehydrated (not a big surprise since his esophagus had been ‘sunburned’ during radiation on his spine lesion (still not known to be cancer).   Getting IVs in was challenging as he was unable to cooperate like he normally would.  And more than once told us all to shut up and “Get my overcoat”.    “Goodnight, goodnight, goodnight” became another mantra, as he tried to communicate what he could not rationally express.  He wanted to be left alone !   Also some ‘biting’ and other odd behavior from someone who was still very much in control of his actions and decisions just hours earlier.  

His blood pressure and heart rate continued to be erratic, but he was sent for an abdominal CAT scan.  The ER doc talked to me about the results, saying it was very complicated.  There was more than one thing going on.   Part of his colon had ruptured, spreading bowel contents, infection, and gas into the bladder, as well as his abdominal cavity.    A catheter was placed and it essentially came back as blood, and very little of that. His kidney function was bad (also a dehydration issue to some degree), and his blood sugar was up (not normal for him, but being on steroids, not unusual).   HIs white count was elevated.    Bottom line:  He was severely septic and too unstable for any type of surgical intervention on the ruptured area.  He was given pain medications and nausea meds as needed, though he vomited a couple of times, and it contained fecal contents.
Once the catheter was placed, the gas pressure in his bladder came down per the urologist (this also was around the time of the Dilaudid, and ability to relax from that as well).   I can’t imagine how that must have felt to a man who didn’t really know how to explain pain very well to start with (due to lack of a lot of history with pain in general), as well as being confused.    (“It just hurts”…. standard answer on a good day).  The wild-eyed moans were heartbreaking.   Add delirium to that, and a general inability to fully understand what was going on, and it had to be terrifying to him- though he did try to answer very simple and direct questions at times. He was still in there, but not fully aware or coherent.

I was offered the option of intensive monitoring in a critical care bed/unit, but I saw no need for that if it was just going to annoy him (bells and beeps are like torture for someone with misophonia ), and we weren’t fixing anything by being there.  So, he was brought to  a single room as a ‘palliative’ patient referral- meaning that comfort care was the priority.  There was nothing else to be done to actually ‘fix’ him.   He was not able to make decisions on his own, but had me as his power of attorney for health designee.  He had chosen comfort only in a time like this.  It still broke my heart to sign the “Do Not Resuscitate” form, as if I were giving up on him… but I knew that it was really all I could do to abide by his wishes in his journey out of this life.   Four doctors had been consulted about any possible treatments/interventions, and none thought dad was stable enough to survive them.   (Update:  Dr. E e-mailed me back that HAD dad been able to survive surgery, it would have likely meant a  permanent colostomy, and continuing paralysis from what was going on with him- a long, prolonged, dependent “life”).    I’ve  always told folks I know- there are a LOT of things worse than dying. 

I did go back in to talk to dad after I’d stepped out to hear the CT results, and told dad that the doctors found out why he felt so bad, but it was very serious, and they could not fix it. I’d promised him that I’d always tell him the truth about what was going on.  I asked him to let me know if he was still on board with focusing on as little pain as possible, and trusting that I’d do all I could so everything from that point went as easily as possible.   I did get a definite, though brief nod.  I also asked him if he was ready to see mom, and he nodded again.   It was official… he was dying.
Dad’s close friends and family were in and out during the afternoon and evening, talking to him, and letting him know he wasn’t alone.  He got some Dilaudid when he got to the room, and that helped his breathing and observable signs of pain (picking at gown, fidgeting, etc).  He gradually settled a bit, and then by around 6:00 p.m., he was unresponsive to any type of stimuli (voice, touch, and when I took the electrode leads off of his chest, along with some hairs- I was as gentle as possible, I promise).   He remained pretty much like that until a few hours later, when he started to sound like he was struggling to breathe – he was breathing ‘enough’, but just took more effort.   The nurses were very attentive, and got him some more Dilaudid, which helped a bit, but in about an hour, he was still not ‘peaceful’.  She then got him some Morphine (very effective in breathing issues in terminal patients, as well as pain for many types of pain), and it took a few minutes to start to see him settle again.  About 30-45 minutes later, I noticed his breathing change, into a very normal, and peaceful rhythm with no straining. 

During hours alone with dad, I talked to him at intervals, and then just watched him.   I knew from years of working with people who were dying, as well as with my mom, that it’s very important to almost give them “permission” to go if it’s a death that is prolonged and/or unexpected.   I let dad know that I knew he’d been working very hard for a long time, with his profession, full-time care of my mom, then finally having some wonderful times with some special folks to share his life, to wrap up his time here on earth with the recent and rapid health decline.  I saw how hard he’d been working  at rehab.  No matter what they asked him to do, he did it, no matter how much it hurt.     I let him know it was OK to rest.  That he would be missed more than I could even imagine, but I, and his friends and family, would be OK.  Mom was waiting, as were his two newborn sons, M (lady friend of 8 yrs), and many, many friends and family.    His hand was limp in mine, but it was still warm, and aside from his fingers, his coloring never really got bad.   

I listened  to his breathing for hours, and had such conflicting thoughts about wanting him to be freed from this body, and selfishly never wanting that sound to stop.   And then it gradually slowed to a peaceful stop, and he was with God .   It has been my utmost privilege to be his daughter. 

Once There Was A Chipmunk…

This started as a reply to a Twitter post of a baby chipmunk asleep in someone’s hand.

They just come up to people if they’ve had no fear associated with humans. I answered a multi-post story of my own- little guy crawled in my t-shirt pocket, rolled it up to suck on and fell asleep.

I had a baby chipmunk decide it wasn’t going back to its mom, who kept trying, but the little guy was almost her size. I watched where she went, and picked little guy up, as ‘non-tactile’ as possible and put him (?) in his house’s front door. He kept coming out to me. Went on…

for several minutes on a very hot day. I’d seen him earlier hiding in the shade of a tire. He decided to KEEP coming after me, so because of heat and his fatigue, I put him in my pocket, where he rolled up my t-shirt pocket and put it in his mouth, falling asleep. Then on to…

PetSmart w/a wild chipmunk in my pocket to get a cage, bedding, little hiding place, food, a bottle set, quiet exercise wheel, and cat-milk replacer. Then back home to look up about how old he was, what to feed him, and when to release him. He was with me for about a month, and did SO well. Until…

was ‘the day’ to let him take off back to his family, or wherever the chipmunks went- tons were under the patio slabs. First day-looked at me like i was nuts; second day, did walk on grass again. Day 3, saw another chipmunk, and it was game on – he took off. The hardest part..

Was not letting him get too attached to me or my dog. He always wanted to climb up my arm when I put food in, and wanted contact- even with my dog, which was not good. Felt bad for little guy, but it was better for him in the end. I’m not a certified wildlife rehabber, but have worked..

with animals at a nature center in a summer camp for kids. Wild critters were not anything new. But I knew that the best thing for him was to have freedom, as adorable as he was. Had a Quaker parrot show up a few weeks earlier, who hated my dad.. he asked if I couldn’t keep…

“the rat” and “lose the bird”? Nope. Little Guy had to go. But he was a lot of fun to watch getting ready to go back to a life without humans. The bird later freaked out and flew back into a metal bookshelf… didn’t end well, but was with me for 18 months. Dad (RIP) also asked if I’d

…’drag in anything that looked pitiful’… told him yup. If it needed help and i could help it… there’s something about animals that needed care that helped me through my first years on disability- I was needed again. My dog also helped with that. I wasn’t worthless.

What to Know About Starting Nutrisystem

After reading so many questions on the comment section of some of the info on Nutrisystem’s FB page and website, I figured I’d try to clear up a few things. I’ve been on it several times- the other times, my health was a reason I needed to stop, but now- a few years after the last time I was on it, I have the all-clear from my doctors. In 11 days, I’ve already lost 5 pounds, and am still loving most of the food ! 🙂 My blood sugars have gone down, and I’m on the way to saving my rickety hips and knees, since I can’t get any of them replaced.

Here are the basics:

Cost: On the women’s plans (shelf stable, or the option to choose from shelf stable and frozen, the cost is about $9-13/day, PLUS any add-ons (I’ll cover those in a minute). They always have some type of promos to cut the costs, and you can choose from 5 days/week or 7 days a week. You can also ‘wing it’ and get ‘a la carte’ for $49/6 months for free shipping and %20 off of the foods. If you call Nutrisystem and talk to the folks who know about the various options, you can get some good deals. And if you are a Costco member, you can get a $100 Nutrisystem card for $80, saving another %20-you can use as many cards as you want with each order. I’m actually saving money- when I pay 2 months at a time, each month is less than $250/month.

Add-Ons: This one tends to be a bit polarizing. Some folks complain that having to spend more on food than ‘just’ the Nutrisystem products is too much. Nutrisystem’s food is not just a frozen dinner (or whatever frozen or shelf-stable product that you can get at the store). The fiber, protein, carbs, sodium, and fat content are much more healthy. You are paying for healthier versions of favorite foods. The add-ons include vegetables, fruit, and dairy (for cereal, or light string cheese for snacks or Power Fuels (explained below). Vegetables that are fresh or frozen are preferred- and frozen veggies (without sauces) tend to be more cost effective (just be sure you have the freezer space if you also order frozen foods). Fruits are the same- fresh, frozen, or canned without sugar ( fruit packed in fruit juice isn’t so great… processed fruits tend to be stripped of fiber).

A Power Fuel is an added protein with 80-120 calories with at least 5 grams of protein (light cheese sticks, light GREEK yogurt, skim milk for cereals, nuts, nut butters, peanut butter powder, etc are examples of a power fuel). You’ll need 2-3 Power Fuels/day for women. Men have more. Cost wise, peanut butter, nuts, milk, light cheese sticks, and milk aren’t that expensive. You can add low sodium meats, seafood, or other proteins. The portions are ‘normal’ portions – which is often complained about, but portion size is how many people end up on Nutrisystem or any other weight loss plan.

Smart Carbs include whole grains, fruit (fresh or frozen- always unsweetened), and other items. Bagel Thins are great with the NS Tuna Salad pouch. A Smart Carb has 80-120 calories and at LEAST one gram of FIBER- but the more fiber the better. You’ll have 1-2 servings per day for women depending on if you’re on the diabetic plan or not (diabetic plan has 2/day). You’ll eat six times a day no matter what plan you’re on. The portions aren’t huge (I’m satisfied by the portion size), but you’ll eat every 2-3 hours. There are also limited extra and free foods, with that info being online once you join. They include some caloric seasonings, spices, herbs, broths, lemons, etc.

Vegetables: There’s no set limit, but for those who want more food, veggies are encouraged. There’s a minimum of 2 cups cooked (or 4 cups raw) of non-starchy veggies (list is on the site once you join). Just no sauces, dips, or dressings unless they are suitable for weight loss. I LOVE Maple Grove Farms- no funky chemicals like one popular brand. You might have to send for them, but some are available on Amazon, Vitacost, and others. Veggies are important. And the frozen ones are not expensive- I pay about $1.10-2.00 per bag of cauliflower, broccoli, stir-fry veggie mix, etc. There are some veggies that are ‘free’ and unlimited. One is lettuce, so some spectacular salads can be made, especially if used with a Smart Carb Igarbanzo beans – or what you like from the list – and some feta cheese – a Power Fuel (again- you can decide what you like from the Power Fuel list). I’m not sure if you can see the Power Fuel and Smart Carb lists if you’re not a buyer, but look for ‘Grocery Guides’ if you can- there are things at the bottom of the website page to help with questions. A pound bag of frozen veggies has about 4 1 cup servings- so no more than 50 cents or so per serving (2 cups cooked per day- a buck)

Water: Not optional. You need a minimum of 2 quarts of water or other non-caloric beverages. Nutrisystem doesn’t use artificial sweeteners, but there are plenty of naturally sweetened drink mixes out there (Crystal Light Pure, True Lemon/Limeade, etc) or unsweetened tea, sparkling water (lots of flavors out there these days), coffee without sugar, etc. Water is one of the most important nutrients out there. If you’re not a water drinker, it could be that city water is so heavily chlorinated, or something like that. If you have well water, you’re in luck (I love well water). You can get spring water at the store for $1.25/gallon.

Flex Meals: when you get closer to your goal weight, you can ‘branch out’ and make up your own meals from foods you have. There is a ‘formula’ for each meal as far as how to put them together. You do NOT have to prepare meals while using Nutrisystem meals. If you go to a party or other get together, it’s nice to have a way to eat what others are (choosing the most Nutrisystem friendly options), and not derail your weight loss program.

_ Example Daily Intake for Women’s Diabetic Program-
Breakfast- one NS Cinnamon Roll, pancakes, waffles, bagel, cereal, muffin, bars, oatmeal.
Snack Power Fuel & Smart Carb (maybe a light string cheese-2 depending on calories, and a small apple)
Lunch: one NS hamburger, meal replacement bar (SO good), soup, chicken sandwich, Hot Pocket type thing, etc. plus add on vegetables.
Afternoon Snack- Power Fuel & Smart Carb (maybe a tbs. of peanut butter and some crackers w/fiber, and toss in some add on veggies).
Dinner- NS Dinner Entree (ravioli, beef stew, pizza, mac & cheese, spaghetti w/mushroom sauce, flatbreads, and others. plus add on vegetables.
Evening Snack- one NS ice cream sandwich, cream filled chocolate cupcake, cookies, BBQ multigrain snack rounds, candy bars (almond coconut, chocolate caramel, etc), chocolate covered pretzels, meat stick, popcorn, and others.

Portions: Nutrisystem uses portions that are reasonable and suited for weight loss AND maintenance. Most people on weight loss programs are clueless about portions and calorie content of foods. The veggies and water help fill you up. But people complain that the meals are too small. I’m never hungry after eating, and have to remind myself about snacks by leaving them out where I’ll see them.

Personalizing foods: One of my favorite aspects of Nutrisystem is that many of the items are easy to customize – like using low sodium chicken broth instead of water for the ‘cup’ lunches (pastas, mashed potatoes, rice dishes, etc- they come in a sturdy paper cup, and require water or broth for preparation, and a microwave to nuke them into lunch). Pico De Gallo is a free food- so that frozen NS Dinner Enchilada w/Rice can get a boost with that. Herbs and spices are ‘free’. The ‘Limited Extras’ are up to 35 calories of whatever you want (like butter for the waffles)- and up to 3 Limited Extras per day. You can save a Power Fuel of cheese (measured amount) to jazz up a cup lunch, or add to a pizza). Putting extra broccoli in the NS Cheddar Broccoli Rice and a bit (Limited Extra amount) of shredded sharp cheddar makes a great lunch. For those who complain about something being bland, Nutrisystem kinda needs to keep things suitable for milder palates. Those who like spicy stuff can always add salsa, herbs, or spices to jazz things up. I add sambal garlic paste to the Spicy Kung Pao noodles, because to me they aren’t spicy at all. But a 1/2 tsp of sambal, and there’s a little kick, and a few cocktail peanuts perks up the texture. Make the food your own! It’s easy to do- and then Nutrisystem appeals to more palates. I like the customizable products.

A word about the chocolate products and weather (except for the breakfast Double Chocolate Muffins)- order them during cooler months. The frozen items are shipped via FedEx in biodegradable styrofoam coolers with dry ice. All shelf stable foods, including chocolate snacks and lunch bars are sent in a regular shipping box via FedEx. I add a few extra ‘a la carte’ items that might not travel well in the summer in my winter and early spring months’ orders. If you live somewhere that isn’t really an area where ‘cool’ ever happens, you can minimize melting and misshapen candy bars by leaving the delivery box UNTOUCHED for a few hours after you bring it inside. There might be a whitish coating, but that happens with any chocolate that is exposed to heat. It’s called ‘blooming’, and just cocoa butter that has separated a bit. They are still perfectly safe to eat- but people complain about them, as if chocolate should never melt. I’m not sure why it is such a shock- regular chocolate melts in the heat… and Nutrisystem chocolate is ‘just’ regular chocolate with better nutritional content. Same goes for anything with a chocolate, peanut butter, or other coating.

I like Nutrisystem food regardless of weight loss. The frozen items are very good, but there are some things in the shelf stable option that I prefer (like my lunch choices- all 28 are shelf stable). I’ve found that things I normally can’t stand are good with the Nutrisystem option, and vice versa… try a lot of things. I’m using my first 2 months to try as many things as I can- there are a lot of new items since I was last on Nutrisystem. And the simplicity of the preparation is a huge perk with dud shoulders and legs. I get decent nutrition that tastes good, and my weight is dropping (5 pounds in 11 days, so far !). AND, my grocery bill- even with the add ons- has dropped dramatically.

Initially, it can sound complicated, but it really isn’t. Some items are ‘open and eat’, some need to be microwaved, and the cup lunches just need liquid and a microwave (put the cup in a microwave bowl until you see how your microwave works with the products, to avoid messes from boil overs- or get a Sistema- see below). My goal is to have 4-5 items per meal (and snacks) that I really like- having representatives from my favorite flavor profiles- comfort, Italian, Tex-Mex, and Mediterranean. I add a few a la carte items just to jazz things up a bit (and some items fit the requirements for Power Fuels or Smart Carbs).

Consider getting a Sistema soup cup- they are perfect for cup lunches and soups/stews/chile. Amazon has different sizes and shapes- this is my favorite for the cup lunches and soups. The vent avoids boil overs, and closing it helps with the ‘resting’ time required (I often reheat for a minute, then let it sit for another 4-5 minutes for a total of 9-10 minutes total so all liquid can be absorbed). Also, a food scale (I got a $12 digital one from Amazon), measuring cups, and measuring spoons are needed.

You CAN order just one month, but ordering 2 months at once saves you %50, and shipping is free on auto-ship. You can also eat dinner for breakfast, and breakfast for lunch, and lunch for dinner- or however you want to do it- just get all of the food and snacks in for the day along with the veggies and water.

There are several vegetarian options (lacto-ovo, mostly). A couple of items might work for vegans, but not a lot.

Trying it for a couple of months will give you a chance to try a lot of the items (150+). You can always cancel- but know that if you are on auto ship and want to quit before the second month, you will have $125 fee for restocking, etc. Auto-shipping is easier for the company, even if you want to delay a month (or speed one up). You’re already in the computer.

Nutrisystem is on Twitter and Facebook, and will answer questions. If you leave questions in the comments, I’ll do my best to answer them. I don’t work for them, but have always liked the program since first trying it years ago (maybe 9 ?). I don’t feel like I’m eating diet food.

Thoughts About The Intervention & Inpatient Eating Disorder Treatment 25 Years Later

This started as a reply to a Facebook post, but I got long-winded as usual… *rolling eyes*

I had an full blown intervention done on me when I was working as an RN in the detox unit of a chem dep treatment center in the Hill Country. Eight or nine co-workers ambushed my butt after working a double shift. I had dropped a lot in just 3 months (like %25 of my wt in that 3 months, %40 in 9 months). While I hated leaving my dog, and not being at work, I was exhausted. I didn’t have anything to say to ‘make my case’. They had the van, driver, and ‘babysitter’ (nurse I worked with) ready with the plane ticket. I flew on my own, which was medically questionable to the other nurses, but was met at the transferring airport, as well as LAX- where I could barely see from fatigue, and had an hour drive to the facility (it sucked- as in being in the business and knowing what to look for, not just being bummed at being there as an inmate). The driver asked what pills I’d taken because I was drifting off- it was pure exhaustion, from working the double, getting about 2 hours sleep at the facility where they had cabins (my coworker stayed in one on the weekends to avoid having to drive back and forth for 12-hour shifts), and being weak in general. There were between 3-6 eating disorder patients at the drug/alcohol rehab place, and we were the oddballs. They finally put our dining room table behind an ‘accordion’ partition so staring at us while we ‘ate’ wasn’t as easy. Early on, when going on beach walks, I couldn’t keep up. The sand was impossible to walk in. Cold turkey from laxatives was horrific (I threatened to steal the vacuum cleaner from housekeeping if they didn’t do something after a week)… but my coworkers cared enough not to let me die. They’d rather I live and be mad at them vs. regretting doing nothing after I died. My primary doc had given me a couple of weeks to survive.

My weight wasn’t low (I started very overweight), but the skin on my heels had come off, leaving craters, and I couldn’t focus. If I ate cereal, it was one piece. In my mind, it was a WHOLE PIECE. If the medication nurse left small pieces of food on a plate near me after saying something like “I’m so full, do you want this?” (uh, no… but I’d take pieces if nobody was looking- I knew she was trying to help- and I was tired of my main prayer at night being “God, please just let me wake up tomorrow, I don’t want to die in my sleep.“) I didn’t want to die, and I didn’t know how to eat enough to function. It was my worst relapse.

Once I got nutritionally patched up (took another 3 years after I was sent home to no aftercare to be able to eat in front of other people- which bosses noticed, though I did eat holed up in my office or behind the office door at the rehab place), my thinking completely changed to more normal views on food (the starvation really messed up food reality) but I had to treat myself like I’d take care of someone else as an RN. I didn’t have the self worth to work on ME, but thinking of myself as one of my patients helped a lot. I had a checklist of food groups I had to consume (from the info the registered dietician gave me at the inpatient place- she was sane), or I didn’t allow myself to exercise. If I really fell short, there was the dreaded Ensure.

I knew I was on my own- the “big mouth” at OA (all 3 people; we met in a parking lot, sitting on the ground… so lovely 🙄) would bring the diet of the week that we “should all be using”. I bailed on that, but got some OA books and other ED recovery books written for professionals. I was eventually allowed to go back to work at the treatment center, where I still struggled with food, but was doing a lot better. I went on to work at a nice nursing home, and a hospital before moving back to my hometown out of state. That was 25 years ago. I can’t say it’s never a struggle- it’s daily to some degree, but the treatment center was horrifying, and the fear of going back to someplace like that was more awful. It’s since been shut down.

Ways to Support Someone With Cancer

This came about after a ‘share the picture of a pink ribbon to show you care about people who have or have had cancer’ thing on social media. It’s always well-meaning, and meant to be a show of support. I hate those ribbons. I’ve had cancer. This is what I posted- but it got too long, so now it’s a blog post !

…..OK, this got longer than I expected. It’s a well-meaning thing to ‘support’ folks who have cancer- but I just want to forget it. NOTHING is the same after cancer, even when everything goes as it’s supposed to. Maybe I’m weird, but I loathe those ribbons. I’ve had cancer, as have SO many family and friends. Each cancer has its own color ribbon, but tits get the most attention (my mom had bilateral mastectomies, lung metastasis, and brain metastasis- lived for 17 years, the last 10 with dementia from brain radiation). Dad- thyroid, lived through that. Others who lived- cousin on dad’s side- thyroid, close friend of dad’s- now fighting multiple myeloma, dad of a friend-chronic myelocititc leukemia, cousin’s wife-Hodgkins, wife of another cousin- non-Hodgkins, mom’s brother in law- lung & brain, mom’s dad- lung, cousin’s husband-prostate. Died- 7 year old son of dad’s first cousin- leukemia, cousin-neuroendocrine colon; other cousin, pancreatic, mom’s brother -esophageal, wife of mom’s brother-lung, aunt-cervical, close friend of dad’s- ovarian, bio-grandmother-uterine, Phil-kidney & brain, former boss-not sure of site, dad’s friend’s daughter- brain, former co-worker, leukemia, former administrator- brain, co-workers 11 year old nephew- APL (more on what that is in a minute), co-workers 8 year old niece – glioblastoma multiformae (brain), local anchorwoman- APL, etc. The list goes on; add those I saw when I was working- can’t begin to count, but remember melanoma killing a 30 and 40 yr old (one of those in a month), pancreatic, liver, bone, etc.
Ribbons ‘do’ nothing. Everybody is “aware” of cancer. What people can do to SHOW they care? A load of laundry, grocery shop (but ask what the person can eat- and it might change every couple of days), vacuum, clean out the fridge (for someone who can’t eat because of chemo and the various issues w/eating, from blistered mouths to blistering asses when that chemo burns through it, cleaning the fridge is horrible). Other things- pick up prescriptions, change the sheets, take the pets to the vet, take the trash out, help with writing out checks for bills so the person just has to sign them (dad found that very helpful), tidy up the area where the person spends most of their time- and if they just want to be left alone, do that. If you don’t know what to do, ask. And if the person is just too tired to even begin to think about what they need, and you see something is out of sorts, ASK if that is something that would be helpful to have done. Help with bathing (back, feet, and legs are hard with no energy, or longterm medication access devices that need to be kept dry aside from prescribed cleaning and dressing changes)… I’m surprised I didn’t have a green fog around me after being in the hospital for 6 weeks- between horrific fatigue, constant IV meds, 25 infusions of blood and platelets, and a PICC line, I relied on bath bags (basically big baby wipes with no-rinse cleaner). I needed a sandblaster when I got home, but was still very tired- so I chiseled a bit off at a time.

“Health Basket”- some things that most people could use- ginger ale, 7-up, Pepsi, jello, pudding, sherbet, chicken noodle soup (actually chicken and stars is easier to keep on a spoon for someone who is exhausted), saltines if mouth sores not an issue, alcohol-free mouthwash, a very soft toothbrush, no-slip socks, easy to watch movies (attention span is shot from fatigue), baby muslin washcloths (terry can be too rough), etc. During the early days of chemo, it’s not the time for the family favorite recipe for ‘lava’ Buffalo wings, nachos, or many foods that are hot in temperature or seasoning, because of mouth sores. If the person’s appetite is next to nothing, don’t get diet products unless they can’t drink/eat the regular stuff (dad actually puked the regular Sprite, as he only drank toxic artificially sweetened sodas- but he also had an easy puke trigger, and the anesthesiologist wouldn’t listen to his sensitivity to midazolam, and gave it anyway- he always puked with that, and that doc was told).

If someone has an increased risk for infection (from actual cancer or chemo side effects), DO NOT bring fresh flowers, plants, fruit/veg that isn’t peeled by YOU, any water that isn’t bottled, and never go see someone on chemo if you have even the slightest possibility of being sick- your cold could literally kill someone with low neutrophils (a type of white blood cell).

The fatigue is indescribable. If you know the person well enough, ask if they need help finding social services to help with bills (social workers have a lot of info on resources for various issues)- cancer is horrifically expensive. One of my oral meds that I was on for 20 months (daily) was $10K/month. My copay was $450, and not doable on a fixed disability income. The social workers found a pharmacy that would fill them (thinking the Lymphoma & Leukemia Society would honor their agreement to pay my copay- they refused because THEY didn’t know that AML subtype M-3 was the same as APL – same exact thing, but they only acknowledged AML subtype M-3-so backed out; the pharmacy ate the costs until I could find a part D, where my copay was ZERO dollars…), or help someone find a different part D plan if they’ll be on chemo into the next year, if they’re on Medicare is also very helpful. I couldn’t leave the hospital without that medication. Dad literally had to bring the first prescription TO the hospital before the doc let me leave the building. The differences in part D are huge- it truly is worth checking them out on

I remember being too tired to even get up from the recliner to go to the bedroom at night (no TV in that bedroom) and often just sat there for most of the night except to go to the bathroom- which is when I usually made it back to bed, unless I had to turn off the TV- then it was being stuck in the chair until I had to go to the bathroom again, and turned the TV off before I got up. It was too exhausting to think about doing more than one thing at a time. Somehow, I got myself to the hospital at 6:15 a.m. every M-F for two 5-week cycles of arsenic, and the follow-up appointments for another full year of daily oral chemotherapy, as well as a total of six years of follow-up appointments.

Some things patients taught me- sometimes Frosted Flakes at 3 a.m. is the only thing that has sounded good for 2 weeks (so I sent the aide in search of Frosted Flakes, and in the end, sent him to the store with 10 bucks and told him to get as many as that would buy- back then it was 4 boxes). Sometimes gently pulling the hair that is falling out gives a feeling of a bit of control- I had a patient tell me that he was just ‘even-ing things up’. The patient decides how bad they hurt- if it’s time, medicate; if not, call the doctor. If they have lost control of bodily functions, it’s not personal if the patient wants someone with more experience to help clean them up- the younger ones didn’t mean to sound ‘short’-they just needed time and experience (I was generally the one asked to clean them up, and I was OK with that- the younger ones didn’t get into trouble- they meant no harm and were simply new… they were very good, especially being so new- but the patient wanted someone older).

And sometimes the most helpful thing to do is just to listen IF the person wants to talk. The topics might be very hard – but someone needs to know what they want if they die (dad and I had several talks over the years, and especially the week before he died, like he knew… that info was priceless). There are no do-overs when someone dies. Knowing what they want is the last gift you can give them. If it’s legal, nothing should be off limits unless it’s just logistically impossible, and the person wasn’t thinking about that- just get as close as you can to sending them off how they’d want to go if they were there to participate. Humor is healing- it’s not ‘wrong’. IF the person wants something silly, go for it ! If they don’t want people standing up and telling stories, don’t include that- suggesting that those who want to honor the person with stories meet up together at a restaurant or park (gotta mind the COVID-19 rules right now).

But maybe most important- don’t do anything you wouldn’t normally do (unless it’s a risk to the person with cancer). Keep relationships a constant during a time of seemingly endless chaos. If you used to visit every week, go see him/her. If the person has had disfiguring surgery (especially facial, or gender specific), it can be a shock if the surgical site is visible. The person you knew is still in there. Treat them like they are. Don’t foster a victim mentality. Every cancer patient is a survivor from the minute they are diagnosed. Even if you know the statistics on some of the more vicious cancers, it’s so important that the one with the cancer is allowed to believe they have a chance. And ‘terminal’ or ‘end stage’ just means that’s what the person is likely to die from… not when.

Want 100 Reasons to Vote For Biden That Aren’t “He’s Not Trump” ?

This comes from a public post on Facebook.
This is NOT my post.

David Ferree (from Facebook post)
September 22, 2020

I have heard from people that they want a reason to vote FOR Biden beyond that he’s not Trump. Okay, I respect that, so I went on his website, poured through his policies, and came up with 100 reasons to vote for #JoeBiden that don’t mention Trump. 

1.) $15.00 federal minimum wage

2.) Reinstate DACA – allowing new applicants to apply

3.) 12 Weeks federal paid family leave

4.) Universal Pre-Kindergarten/Childcare for ages 3 and 4

5.) Tuition free college for those with household income less than $125,000.00

6.) Allow student loans to be relieved in bankruptcy

7.) LGBTQ+ Equality Act in the first 100 days in office

8.) Rejoin the Paris Climate Accords

9.) Decriminalize cannabis use and expunge convictions

10.) Eliminate cash bail system

11.) Eliminate mandatory inimum sentences

12.) Outlaw all online firearm and munition sales

13.) Restore the voting rights act

14.) Create a new $20 billion competitive grant program to spur states to shift from incarceration to prevention.

15.) He’ll triple funding for Title I Programs

16.)  Appoint the first Black Woman to the Supreme Court of the United States

17.)  Reauthorize the Violence Against Women Act (VAWA)

18.) Ensure the US achieves a 100% clean energy economy and net-zero emissions no later than 2050

19.) Protecting Biodiversity, slowing extinction rates and helping leverage natural climate solutions

20.) Develop a plan to ensure that America has the cleanest, safest and fastest rail system in the world, for both passengers and freight

21.)  Expand the safety net for survivors

22.) Confront online harassment, abuse and stalking

23.) End the rape kit backlog

24.) Address the deadly combination of guns and domestic violence

25.) Change the culture that enables domestic violence

26.) Support the diverse needs of survivors of violence against women

27.) Protect and empower immigrant women

28.) Lead the global effort to end gender-based violence

29.) End capital punishment

30.) End federal private prisons

31.) End all incarceration for drug use alone and divert individuals to drug courts and treatment

32.) Invest in public defenders’ offices to ensure defendants’ access to quality counsel

33.) Expand and use the power of the US Justice Department to address systemic misconduct in police departments and prosecutors’ offices

34.) Reform qualified immunity for officers

35.) Ban choke-holds/neck restraints by police

36.) Launch a national police oversight commission

37.) Stop transferring weapons of war to police force

38.) Free access to testing for all with national testing board

39.) Double drive through testing sites

40.) 100,000 contact tracing workforce

41.) Guarantee first responders have priority access to PPE

42.) Emergency paid leave for anyone who gets COVID or needs to take care of a loved one

43.) Free housing for health care workers to quarantine

44.) Ramp up large scale manufacturing of as many vaccine candidates as necessary

45.) Nationwide vaccination campaign to guarantee fair distribution

46.) Ask every American to wear a mask

47.) End the mismanagement of the asylum system, which fuels violence and chaos at the border

48.) Surge humanitarian resources to the border and foster public-private initiatives

49.) End prolonged detention and reinvest in a case management program

50.) Rescind the un-American travel and refugee bans, also referred to as “Muslim bans.”

51.) Order an immediate review of Temporary Protected Status (TPS) for vulnerable populations who cannot find safety in their countries ripped apart by violence or disaster

52.) Ensure that Immigration and Customs Enforcement (ICE) and Customs and Border Protection (CBP) personnel abide by professional standards and are held accountable for inhumane treatment.

53.) Revitalize the Task Force on New Americans and boost our economy by prioritizing integration, promoting immigrant entrepreneurship, increasing access to language instruction, and promoting civil engagement.

54.) Convene a regional meeting of leaders, including from El Salvador, Guatemala, Honduras, Mexico, and Canada, to address the factors driving migration and to propose a regional resettlement solution

55.) Raising the corporate tax rate to 28 percent.

56.) Requiring a true minimum tax on ALL foreign earnings of United States companies located overseas so that we do our part to put an end to the global race to the bottom that rewards global tax havens. This will be 21% — TWICE the rate of the Trump offshoring tax rate and will apply to all income.

57.) Imposing a tax penalty on corporations that ship jobs overseas in order to sell products back to America.

58.) Imposing a 15% minimum tax on book income so that no corporation gets away with paying no taxes.

59.) Raising the top individual income rate back to 39.6 percent.

60.) Asking those making more than $1 million to pay the same rate on investment income that they do on their wages.

61.) Tackle the crisis of Missing and Murdered Indigenous Women

62.) Ensure tribal nations will have a strong voice and role in the federal government

63.) Restore Tribal lands and safeguard natural and cultural resources

64.) Joe will dramatically increase funding for both public schools and Bureau of Indian Education schools.

65.)  Invest $70 billion in Tribal Colleges and Universities and Minority Serving Institutions.

66.) Ensure full inclusion of people with disabilities in policy development and aggressively enforce the civil rights of people with disabilities.

67.) Guarantee access to high-quality, affordable health care, including mental health care, and expand access to home and community-based services and long-term services and supports in the most integrated setting appropriate to each person’s needs and based on self-determination.

68.) Expand competitive, integrated employment opportunities for people with disabilities.

69.) Protect and strengthen economic security for people with disabilities.

70.) Ensure that students with disabilities have access to educational programs and support they need to succeed, from early interventions to post-secondary education.

71.) Expand access to accessible, integrated, and affordable housing, transportation, and assistive technologies and protect people with disabilities in emergencies.

72.) Advance global disability rights

73.)  Double the number of psychologists, guidance counselors, nurses, social workers, and other health professionals in our schools so our kids get the mental health care they need

74.) Invest in our schools to eliminate the funding gap between white and non-white districts, and rich and poor districts

75.) Improve teacher diversity

76.) Support our educators by giving them the pay and dignity they deserve.

77.) Invest in resources for our schools so students grow into physically and emotionally healthy adults, and educators can focus on teaching.

78.) Ensure that no child’s future is determined by their zip code, parents’ income, race, or disability.

79.) Provide every middle and high school student a path to a successful career.

80.) Start investing in our children at birth.

81.) Double funding for the State Small Business Credit Initiative.

82.) Expand the New Markets Tax Credit, make the program permanent, and double Community Development Financial Institutions (CDFI) funding

83.) Improve and expand the Small Business Administration programs that most effectively support African American-owned businesses.

84.) Increase funding for the Minority Business Development Agency budget.

85.) Make sure economic relief because of COVID-19 reaches the African American businesses that need it most

86.) Reserve half of all the new PPP funds for small businesses with 50 employees or less

87.) Help families buy their first homes and build wealth by creating a new refundable, advanceable tax credit of up to $15,000

88.) Protect homeowners and renters from abusive lenders and landlords through a new Homeowner and Renter Bill of Rights.

89.) Establishing a $100 billion Affordable Housing Fund to construct and upgrade affordable housing

90.) Fully implement Congressman Clyburn’s 10-20-30 Plan to help all individuals living in persistently impoverished communities

91.) Expand access to $100 billion in low-interest business loans by funding state, local, tribal, and non-profit lending programs in Latino communities and other communities of color and strengthening Community Development Financial Institutions (CDFIs

92.) Expand broadband access to every American.

93.) Protect and build on the Affordable Care Act to improve access to quality health care in rural communities.

94.) Expand access to high-quality education in rural schools.

95.) Transform our crumbling transportation infrastructure – including roads and bridges, rail, aviation, ports, and inland waterways.

96.) Expand bio-based manufacturing to bring cutting-edge manufacturing jobs back to rural America.

97.) Strengthen antitrust enforcement

98.) Introduce a constitutional amendment to entirely eliminate private dollars from our federal elections

99.) End dark money groups

100.) Ban corporate PAC contributions to candidates, and prohibit lobbyist contributions to those who they lobby.


Identity Theft, Scam Calls, and Online Creeps… All Just Names for Thieves

This actually started out as a reply to a post on Facebook. And it got pretty long, so here it is ! Unfortunately, I’ve had personal info and credit cards stolen online several times. I’ve become rather bitchy if I get a phone call, and I don’t recognize the caller ID. Even my Samsung Tracfone had some issue (don’t know what happened, but my phone number was erased from the SIM card- could have been something totally unrelated to ID theft, but who knows?). 

I’ve had my credit cards hacked more times than I can count. I started out relatively trusting many years ago, but it didn’t take long to become a snarky b…… big mouth. I didn’t have personal experience with all of this, but it’s related, and a lot of it is from personal experience.

Don’t say “Yes” to ANY question on the phone from someone you don’t know– don’t even say the word ‘yes’…the thieves can take that part of a conversation, and patch it into anything they want, charging your accounts & saying you gave consent. Even if folks have accounts with someone who calls (or says it’s from a company you have business with), get their first and last name, then call the number back that is on the invoices or websites that you already have- ask if someone from their company has tried to contact you. If they hang up, get the phone number from your call history, and write it down to do a reverse phone look up (more on that in a minute).  Report scam and robocalls to the FCC- their form is long, but easy.  They won’t answer individually, but the information helps them with patterns and investigations.
It’s a lot easier to apologize to someone legit than clean up the mess from the thieves.  If I don’t recognize a number or the caller ID is vague, I answer with a very harsh “What?”. People who end up being legit have been very understanding when I tell them that I’ve had ID theft issues.  Just apologize nicely, and from my experience, I get a lot of “Hey, I know what you mean. No problem.”
Set up alerts on any accounts where you can lose money– bank/debit card/credit cards/etc. I keep mine fairly low ($50 or so), so I’m alerted to charges before they become shopping sprees. I had 2 tickets to Abu Dhabi ($1200 or some such number) blocked by my bank at the time- who then called me to ask if I was going on a trip- they didn’t have any alerts at the time, but recognized my patterns. The crooks can be calling from anywhere even with YOUR local area code on the caller ID, and shop with your cards anywhere in the world.

Sometimes you have to do a little bit of ‘profiling’ if you don’t initiate a call. This isn’t to be mean- it’s because it’s necessary to avoid having your identity jacked.  If someone is on the line with a distinctive “not originally from here” accent, and YOU initiated the call, relax.   Part of the amazing part about the US is that we are a melting pot of different ethnicities and cultures. It makes this country richer by the diversity we have.  If you get someone who calls YOU, and seems to have a failing grade in “English as a fifth language”, claiming to be collecting donations for desperately poor kids in Beverly Hills, just hang up. They could be calling from some outpost in Mongolia. I hate being guarded, but I’ve got no sympathy for thieves- I’m sure Beverly Hills will be fine. The folks who call from “offshore” locations are just trying to make a living, but they’re also thieves in how they do it.

If you get any indication of a country outside of the US being the source of the call (reverse phone call look-up can help), and want to make a donation, I strongly suggest Compassion International. You can sponsor a kid, or do a one time gift.  I’ve got sponsor kids in Bolivia, the Philippines, Ghana, Tanzania, and Thailand.  By helping them get out of poverty, they won’t end up in call centers or as sex slaves.  It’s a legit way to help those in countries with high rates of poverty- it’s a hand up for a child, and in turn his or her family. The organization helps them as kids, and through trade schools, or college. Compassion International has very good ratings on Charity Navigator (another great resource). OK, PSA complete. 

Another clue- you get a phone call, and they ask for your phone number. Their computer just happened to connect your sequence of numbers – pure ‘luck’ for them. Don’t give them the number- it’s another form of ID.  If you get tenacious jerks calling, get an old school gym whistle if you see the number on the caller ID, and answer with that. I had one scam caller call every 45-60 minutes for 12 hours/day.  If I’m in a particularly snarky mood and happen to answer the call (normally I don’t), I’ll call them on it with a “you called me- you had my number when the phone was ringing”. Or, just say “amateurs” loudly enough to hear AS I’m hanging up. If you can block numbers, do that.  I have a landline call blocker (yes, some people have landlines), and it’s great- and programmed with 5000 known scam numbers- and you can add more by scrolling through numbers and simply clicking a big red button.  Also get all phone numbers on the ‘Do Not Call’ list- it’s not %100, but it helps.
If someone says your kid/grandkid/friend/vet’s hairdresser, or whoever needs help, hang up and call the number you have for the person you know. Do NOT just redial the number that contacted you. Redialing is another way to get and keep your phone number.
If ANY charity calls and wants donations, don’t do it on the phone. Call your local chapter’s office (including law enforcement and fire- but use non-emergency number) to see if they are soliciting… the online thieves and phone bandits use ANY name- including very well known ones. I also don’t talk to charities for first responders. That sounds cold, but thieves know how to pull at emotions. If you want to make a donation to the police/fire/EMTs, just call the city’s office for whoever, and ask how to do that. NEVER over the phone if you didn’t make the call.
Do reverse phone look-ups on unknown numbers. I’ve found southern California to be a minefield of scam callers, but they’re all over the country, as well as out of the country. It is easy for them to put YOUR area code in their caller ID.  DO NOT PAY for reverse phone look ups. Just put the number in you want to find instead of a name, business, or whatever. Hit enter, and wait. There are sites with ‘reviews’ of phone numbers. And some will give you the name of the person calling.  Sometimes it’s a stolen number, so don’t call back and yell at the person- they might not know their number has been jacked.  Medical offices often have vague caller IDs for patient privacy. They understand online shenanigans as well, and a simple apology is easy enough.
Don’t talk to anybody who claims to be from a computer problem fixer company, credit card, or bank. Just hang up. If you don’t initiate a call that requires payment information, it’s not worth it to expose more of your info. You can call your credit card and bank with the phone number you know is really theirs.
The IRS will never call you about any problems. They still use USPS.
IF your American Express card gets hacked, they’ll send you a new card that has all the same numbers as the stolen card EXCEPT the last 4 numbers- which are the only ones seen on invoices/statements- it fixes nothing, and might slow the thieves down for a couple of weeks (personal experience w/this and AmEx; took 4 or 5 new numbers before someone at the company told me that I had to ASK for LOGICAL changes to a stolen card). YOU HAVE TO ASK them for an entirely new card number PLUS blocking any/all other AmEx cards- they’re still usable even with the NEW last 4 numbers !!! The excuse? To avoid hassles with subscriptions or regular charges. Like getting a new card and cancelling a bunch of stuff isn’t a hassle. I told them that I’ll decide what’s a hassle to me. I recently paid them off and closed the account. My other card company (now with a zero balance, so anything fishy shows up immediately) had more sense.

I had a $1500 pair of butt ugly Louis Vuitton shoes show up at my door- which creeped me out. They had my AmEx and my address. I called the sheriff on that one. I felt like I’d been mailed evidence !   He said that online shopping sites with fast delivery had been a problem in town at the time. He reassured me that the ability to get very far with my stolen e-mail address (more on that coming) was minimal.  But, scanning the bar codes during delivery can bring up some information, and of course, they have the address on the package.

I now reload a gift card every month, and don’t use my debit card for anything except for the gift card- then delete the debit card until the next month on different days of the month. Once it clears my bank and the card is reloaded, the debit card isn’t visible or connected to my shopping account.  IF you prefer Walmart, you can get their Visa gift cards, but it’s a little tricker to get your full card’s worth out of them since some places won’t take more than one card for a single purchase- if you get $50 cards, and have a $85 total to pay for the stuff you want, you might lose out on the “change” from 2 $50 IF the store will take two cards for one purchase.

And a huge risk- DON’T GIVE YOUR E-MAIL TO ANYONE who you don’t initiate contact with, or know personally. It’s like giving up the keys to the backdoor of EVERY ACCOUNT YOU HAVE, whether you pay bills online or not. My e-mail was stolen (another risk- I didn’t give it to someone on the phone) and SOLD ON THE DARK WEB. That’s were pedophiles, sex traffickers and other creeps who can’t risk being found on the known internet sites live. Changing e-mails is incredibly annoying. And your old one is still circulating.  Make hard copies of anything you don’t want others to have, and minimize things you keep in files. Technology has been a good thing in many ways, and created many ways for thieves to run rampant.  You can get ID theft protection services, but I haven’t found them to be that helpful. One of the big names completely missed the Louis Vuitton shoes that were purchased online in a state far from where I live. 

It’s a pain in the butt to deal with these remorseless jerks, and the havoc they cause. Whether it’s some other country’s poor folks just trying to make a living (by assuming all Americans are rich- HA!), or a ring of ID theft thieves, it’s still criminal.  You’ve got to keep yourself safe. Nobody else will.

So You Think That Bars Being Open Is More Important Than Following CDC Guidelines

I’m thinking about Texas since I lived there for 17 years, but goes for any state with morons.  So, you know, everywhere…  I worked as an RN in Austin, a town in The Hill Country, and know people all over the state.  But the principles are the same.

Has all of this COVID-19 stuff been a big wet rag on life as you knew it?   Probably. Are you too young to know that when you’re actually grown, a year is nothing? Likely.  It’s one set of holidays and work weeks (if you’re not still living in your parents’ basement).  Are you old enough to know that this isn’t how you want life to be?  Yup. But here’s the thing… if you don’t follow the guidelines, the only thing in your future that people will think of is your funeral. And they’ll talk about how you wasted your life over a mask. A 50cent mask.  That’s the price you put on your own life. I’d have said at least a buck.

Do you know what happens when someone is sick in a hospital whose capacity has been exploded beyond what they can deal with like they normally would?  If you’re lucky, you get a new oxygen mask/cannula every week like normal- but with shortages, you may have the same snotty one for many weeks. Someone will pick the boogers out now and then with a needle.  If you end up on a ventilator (vent, from here on out), you will be knocked out. You won’t have a clue- until they run out of the medications used to make being on a vent tolerable (vents hurt, and the more pressure needed as your lungs stiffen up from damage caused by COVID-19,  the more it hurts- so you are knocked out for comfort reasons).  Then you’ll have a big clue- because you will be tied to the bed so you can’t remove the tube going down your throat  into your ratty, stiff lungs. You’ll know everything that’s going on, and each time the vent gives you a breath, you will want to scream.  But that can’t happen when there’s a tube between your vocal cords. You won’t have any family or friends around during this, unless they’re dying in the next bed- and they’re no good to you then.  The patients in this video are so quiet- because they don’t have the the ability to get a good enough breath to speak…

SO, are ya having fun yet?   Excruciating pain, tied to the bed, with a tube the size of your little finger ramming air every 3 seconds or so, into your restricted lungs ?  Sounds like a party to me!   You’ll have a catheter going into your bladder to drain urine (which, if you’re not familiar with catheters, is put in the same hole you’re used to urine coming out of), until your kidneys fail- and then dialysis until it quits working, after which you’ll die over a week or two max. It won’t be fast, but long enough to wish every second that you’d made different choices since they ran out of the good drugs a week before you started circling the drain. . You’ll also feel every time they have to stick a needle into your wrist, so they can see if you have enough oxygen in your blood- not just the little painless oxygen saturation monitor. You. Will. Hurt. Like. Hell.    But, go ahead, make plans to be in close proximity to those not wearing masks- and you could bring it home to your family.  Any one of those you’re eager to get rid of?  No guarantee the ones you like won’t get it instead.  And no guarantee the refrigerated truck will have enough juice to keep all of the bodies cool enough to get to the funeral home, who only has time to stick you in a box and put you in a public grave- to be sorted out later.  The bodies are piling up too fast for proper identification by family, and families aren’t allowed in the trucks.  SO, you end up in a mass grave. Until someone fishes your soggy boxed body out of the dirt in several months. Think this is too dramatic?  These guys got the only trucks they could find- unrefrigerated.  They did the best they could.  And you could end up in a truck like this… your body decomposing so that fluids drip out of the truck.

Maybe you could ask the state to let you hang out in one place to drink and party.  Those ICE Detention Centers should be empty soon. In theory, they could be used for people who don’t think the rules should apply to them.   Cages sound appropriate for you. Here’s the thing, though.  Nobody leaves until everybody tests negative, which doesn’t start until after the initial 14 day quarantine. If you get sick during the time nobody can leave, you get no care at  all (which is fair no matter where you are- why should the ones bucking the guidelines who get sick get the last vent over someone who has followed every CDC guideline, and was made sick by a jerk like you?).  If you get sick in the detention center, you might skate through with something that feels like a bad flu- or you could end up dying after days of gasping for air.  Your body will begin to decompose, and the smell of putrification will sting the nose of anybody still alert enough to notice.  It will be like a hot August afternoon on a Texas backroad where 3 adult deer were hit by a truck three days earlier. Times however many people have croaked at the center who are also rotting.

Maybe you’re one of those ‘spiritual’ sorts who gets wasted on Friday night, so the hangover is gone by Sunday morning and you can pass muster at church- which is also blowing off public health.  I’m a Christian; I grew up in a church I loved going to several times a week. If your faith isn’t strong enough to go without being in a particular building once a week (minimum), then the virus guidelines aren’t the biggest issue in your church career.  Church isn’t a building. It’s the people in it. You can come up with some creative ways to worship and still live. Is ‘fellowship’ important?  Yup. But would God give you a  brain to understand scientists who study the things He created?  I think He’d be mortified He gave you a brain at all.

What about what happens after you test negative?  Well, the full story isn’t really known since this isn’t a virus anybody has seen before all of this started.  Lung damage is likely from what is known. And more is coming out about brain damage. That could mean seizures (so medication and no booze for the rest of your life), or worse- as in staring off into space, wearing diapers that your friend from high school that you hated is changing, because she went to nursing school while you were boozing it up at the bar during a pandemic.  Sound fun?  Your petty dislike of that high school adversary changing your drawers, wiping crap off of your butt, and then putting moisture barrier cream on your nether regions , to prevent you from getting DIAPER RASH?  At age 21 ?    Your. Life. Will. Be. Over. As. You. Know. It.

Or, you could wear the mask for however long it takes to protect yourself, AND those around you, and live long enough to celebrate at the bar when the virus is less of a risk than falling off of the barstool.  If you’re still wanting to do what you want when you want (because you’re a selfish brat that acts like you’re still 3 years old), then you could speed things up and go sit in a low-water crossing during a gully-washer.  None of those who drown thought it would happen to them, either- and how many of you (in TX for sure) know someone, or know someone who knew someone who was swept away during a flash flood?   People will still talk about how stupid you were at your funeral (if they find your body), but at least there will be people you didn’t contaminate, still alive, to pay their respects.

Grow up – or become the poster child for birth control.

What happens to a body when the morgues and funeral homes are overrun? Search for “Farm of Rotting Bodies in Tennessee”.   Warning – it’s very graphic.


Why “Black Lives Matter” Is Important To ALL of Us

This was a  reply to another white poster on a FB page talking about ONLY expressing all love and peace to folks honoring the girl who took the video that gave ALL of us a window into the murder.  NO consideration for the justified anger and fear.
My reply:

    • We are white- we have no frame of reference for the generational oppression of African Americans... starting life behind the white kid born the same day, and having education, social, criminal justice, and employment systems all set out to keep black people in dependent roles or incarcerated. Do some get out of it? Yeah- but for the most part, from my understanding, that is extremely difficult.

      Watch “13th” and “When They See Us”. Watch “Selma”- whose primary issue is the RIGHT to vote for black Americans. Learn about ALEC- and look at the companies in it- it’s horrific. Laws are being made by people we don’t vote in, but by company executives and their Congressional buddies. Not what constituents want. If more people knew about ALEC and voted with their wallets, it would help.  Look up “Say Their Names”.

      Wouldn’t you be terrified if every time you left home, you knew you could get killed because you didn’t dim your bright car lights when you passed a cop car? Wouldn’t you be angry (and have it come out as hate) when WHITE people bought your ancestors like they bought and used a bag of flour? Those slave ships weren’t made by Carnival Cruises. The kidnapped slaves were chained together in horrible conditions, including having to endure the decomposition of those who died en route (who weren’t thrown overboard) with oozing bodily fluids and stench running against your legs? Can you even begin to understand that level of fear?  You and I don’t have the same generational history of being treated like we don’t matter. Ignorance has contributed to black oppression, and that can only be dealt with by whites,  whose ancestors thought owning humans was OK 400 years ago. The ignorance must stop.

      I’m adopted, and in looking up my biological family, I found out that I had ancestors who owned slaves. I bawled my eyes out, because the generations after them (and especially the last 2-3 generations) have been so pro-equality for all races. One of my great aunts refused to sit at “white” lunch counters. I’m so proud of her for standing up in the early 60s, and when I met her, she was very instrumental in opening my eyes. It hurts my heart to know that my ancestors thought it was OK to own people. All I can do is get educated, and stand on the side of what’s right- everybody deserves the same chance to succeed. And right now, we focus on Black Lives- as the majority of the police brutality is directed there. Black lives have been brutalized for centuries. That alone is enough for anger- but to be killed because the criminal justice system is rigged against black Americans?  How does this still happen?  WHY do we allow it to keep happening?  That’s on us.  Had it not been for Darnella Frazier’s video of the actual murder of George Floyd, the absolute ‘in your face’ mentality of the cop kneeling on Mr. Floyd’s neck, and the other two not stopping him wouldn’t have had the power it has had. We. Watched. A. Murder. Eight minutes and 46 seconds is plenty of time to change course- and nobody did. The bystanders tried, and were threatened.

      What if your spouse/ significant other POSSIBLY had a counterfeit $20 and your spouse/SO was killed because of it? Trying to breathe for almost 9 minutes?    ( I haven’t heard that the counterfeit bill was even confirmed. ANY of us could have one in our wallets – that’s why they use those pens to check paper money)   Mr. Floyd was begging for his Mama. We saw the life drain from him. What if that was something that the white community had happen? There would be all sorts of mayhem going on. And it wouldn’t be peaceful.   I know I’d have a period of time of intense rage that could very much seem like hate. And as much as I try not to hate, I’m sure I’d have periods of that, probably for the rest of my life. Why didn’t those cops just talk to Mr. Floyd? At best it was a misdemeanor that a white person would have been asked about, and sent home. Mr. Floyd was worth $20 to those cops. They could have let things chill, then go to the house, and have a chat.

      The protests in my community have been mixed groups, organized by some extremely smart young black folks. Black, white, Asian, Hispanic- all walking together. They have kept the police in the loop, who have tweeted their location so motorists can avoid the area to keep the protestors safe…. nobody hating anybody.  The police are protecting the protesters. When an intersection the protestors wanted to sit down in was too dangerous because it is a main road to the nearby hospital, the protestors found a different plan that worked out, and the police made sure they were safe.

      This latest round of black folks killed by white police is so fresh, and before we adjust to hearing another victim’s name, there’s another one, and another one.  And it feeds into the generational history of essentially being hunted down and killed, or owned. There are too many who have died senselessly for the anger to be soothed. Sweeping reforms in so many systems in the US must change to give everybody an equal footing from the start. The 400 years of being “owned” doesn’t lend itself well to trust just because we WISH things were different- we have to vote for politicians who will fight for equality that should have been taken care of with the Emancipation Proclamation, 13th Amendment, 14th Amendment, Civil Rights Act of 1964, and the 15th Amendment that was shown in Georgia THIS WEEK as being rigged towards whites. And again in Kentucky.  COVID-19, my ass… mail in ballots would make it fair for everyone.  Ever think what the real reason might be?  It’s another way to make it harder for persons of color to vote.

      We can pray for our lawmakers to do what is right. We can pray that the people who can make a difference for the longterm get it right. We can pray for our enemies- but we can also own our feelings. God gave them to us. We can show love- but to expect “love and peace” right now from African American citizens is pushing it imho. WE should all be outraged and fighting WITH them. We are in this together- but as whites, we have luxuries that blacks don’t have.  We don’t have to prove we’re innocent because we exist. We don’t get targeted for “suspicious behavior” (at least not without some blatant actions; a black guy just has to be there). It shouldn’t be harder for a black person to survive an encounter with police. White privilege isn’t about money or social standing. It’s about not being seen as guilty until proven innocent. It’s about being able to walk into a convenience store without the clerk looking to see where the gun is.  It’s about being given chances that we don’t earn, we just get them more easily.  That makes me ashamed.  I don’t want something that a black counterpart is ignored over.

      I’ve forgiven the guy who attacked me in 1987 (scrawny white guy), but I’m never going to be in the same room with him. I do parole protests every 3 years to get him to the 60 year sentence he changed his plea mid-trial to accept. But I’m not going to love him. I can forgive out of obedience to God. I can pray Numbnuts changes. I can pray he never hurts anyone else- but I certainly don’t trust him. I can wish him some sort of change that makes his life one that had purpose besides a lifetime of crime-literally from childhood, but that’s up to him. Imagine if ALL of my ancestors (who could be found) had been through the same thing. Would I trust scrawny white folks? The police were good to me (they found the guy in my bedroom, so not much guess work with blood on the walls and floor and table). But that’s not what is expected by the black community- they’ve seen too many of their own lying dead. That would make me fearful. And I just went through 6 hours of hell… imagine if it was an entire lifetime, with all who came before me on slave ships having had it exponentially worse? Just for being black. Just some  more melanin cells than white people. Those extra melanin cells are a protective mechanism that reduces the risk of skin cancer.  Melanin blocks UV light.  Some extra skin cells… that’s the ‘crime’.  It’s outrageously ridiculous to judge someone for how their skin is made. And yet that is the reality for black America.  

      Trust is going to be understandably difficult. The way we help with that is to vote and speak up for those who could be injured (or worse) for doing so. It’s also by listening and getting educated on the way slaves were treated, and the similarities to the treatment of people of color now. We learn about the REAL history of black America. Without them, America doesn’t exist. The financial infrastructure of early America was literally built off the backs of slaves. Without them, we’d never have made it to the Industrial Revolution.  Our white history books are a joke.  No more lip service.  We need to stand with our HUMAN brothers and sisters, and SHOW them we care. We can’t learn too much. Because too much is still not enough. Healing is going to take time. And it’s not up to white people to decide when enough is enough. We lost that right when the first slave was paid for.

      I haven’t heard one Black Lives Matter supporter say they want more than white Americans.  They just want the same chances. They want to be treated fairly. They want the same social, educational, employment, and criminal justice standards as their white counterparts.  They want to be seen as being valuable  and not guilty before any crime happens.  And if there is a crime committed and convicted, the same prison sentences as whites. Not a life sentence for mere marijuana possession – no distribution, no selling to kids… just having the stuff.

      Just mho. ❤️ I’m sorry it got so long- but this is a topic that demands our willingness to read and watch all we can to get SOME clue of the systemic racism that IS still a big problem in this country. We all belong. It’s way past time we treat people of color like they belong. I will never understand being black in America.  But I can have compassion, and do my best to hear what is said or understand what is written. And for the sake of all that is true, don’t say that the US isn’t plagued by systemic racism.

So Much For Medical Cannabis… I’m Done With THC

I gave it a go for a little over 2 years.  I had to try it to know I’d done what I could to avoid staying on opiates, but I can’t take the increasing pain of the progressive sensory neuropathy, degenerative disc disease, degenerative joint disease, fibromyalgia, and now gout, with THC.  I’ll still take the CBD as a supplement, as it helped me to get off of one anticonvulsant completely (I’ve got a seizure disorder), and %40 of another- along with the meds to deal with the side effects.  This week, I went back to the pain management doc that I’ve seen on and off for over a decade, and got pain meds (patch), as well as an injection in my neck. I kind of feel like I failed right now, even though intellectually I know that’s not accurate.  I have to be practical, and safe.  My quality of life and ability to get anything done around the house isn’t possible with the pain. My legs shake, and I become unsteady.  There are no brownie points for needless suffering. I don’t use the word ‘suffer’ lightly, as it feels like another way to play the victim. But it’s been bad.

Something else that made trying THC something to consider is the emphasis on those who use opiates as inevitable future junkies. It’s actually far from inevitable. Studies have shown for decades that those who use prescription pain meds as ordered are very unlikely to become addicted to them. The terms tolerance and dependence aren’t explained, and everybody gets lumped together.  People who use medications AS PRESCRIBED will likely develop dependence and tolerance if they take them for a while (ever had a caffeine-withdrawl headache? Same concept.)  Those terms are not the same as addiction. Addiction is driven by emotional issues, and the individual trying to relieve emotional pain with medication for physical pain. No amount of the wrong medication for any problem will ever relieve the real issue. This explains that addiction is a combination of behaviors and substances (that can be drugs, alcohol, food, the ‘high’ from gambling, and other things that trigger positive responses in the pleasure center in the brain).

There are now so many restrictions on who can prescribe what meds in medical groups, that the writing was on the wall- pain medication was the new ‘evil’.  Never ask a doctor for something for pain, no matter how many documented diagnoses there are.  I felt I needed an option if the restrictions got worse. I’d like to see the statistics for the increase in heroin users after hydrocodone was made a Schedule II drug (in the class with morphine, hydromorphone, and other very strong opiates). The ‘rules’ are always made because of the behavior of rule breakers. That ‘logic’ escapes me… it’s not like the rule breakers will suddenly jump on the straight and narrow. They’ll find a new way to break rules.   The rules don’t take into account those who do what they’ve been instructed to do. Should there be good follow-up with those on prescription pain medications ?  Absolutely.  But there is no reason to make anybody “live” with pain that limits their life to the point of decreased mobility to avoid more pain even within their own home.   This article has some good explanations about the differences between tolerance, dependence, and addiction.

Distinguishing Between Pain-Related Dependence and Addiction

Some of the issues I’ve had with the THC include the following  (I realize some folks have had good results with THC- this is MY experience):

–  I can’t know if the same strain is in each bottle of the stuff I got, as  no strain of cannabis is listed on the tablets/capsules/edibles containers that I’ve used (I don’t smoke the stuff- the stench is not welcome in my house. Dry herb vaping- no solvents at all- just the dry cannabis that vaporizes, not combusts- was also not going to work because of the coughing). There are literally hundreds of strains of cannabis.  Third-party testing is on the container (required by law), but not the strain, aside from a general sativa, indica, or hybrid.   I don’t know if it’s strain-consistent from batch to batch– just the number of milligrams of ‘whatever’.  Different strains are good for different things. And some have more likelihood to cause specific side effects- can’t know what might be causing what if no strain is listed.

I live alone. Some of the effects of THC are not safe on a mobility level.  My balance goes wonky if a strain is stronger than what I’m used to, and I’m already one fall away from needing help with more than just the lawn, snow removal, and grocery delivery.  I can’t risk that. My joints are already trash. It wouldn’t take much to finish off  my shoulders, hips, or knees. Or end up with compression fractures in my spine. That means my independence is at risk, and that is something I won’t even consider. If I can’t be at home with my dog, it’s over.

–  the dryness of my eyes was horrible. I was either dripping with tears (that burned) as my body tried to protect my eyes, or using artificial tears to not feel like I’d had cotton shoved into my eyeballs. That also caused blurred vision to the point of not being able to read anything without a 10x – 30x lighted magnifying glass (some print is tiny on a good day anyway… I couldn’t see individual words. Watching TV was lousy, and the computer (my lifeline) was nearly useless. A blue light filter helped a little- but not enough.

the ‘thought stealing’ sensation was too weird.  I could be thinking about something, then it would just be gone, and it was going too fast to get back.  That is unsettling, especially because the awareness of it was acute. Even harder to carry on a conversation with another actual human being.

there isn’t a consistent time when it takes effect.  I used it mostly to help ease the pain so I could sleep. If I waited too long to turn the lights out and drift off, I got a literal body ‘buzzing’ sensation (hence the term buzzed), or floating, or like I couldn’t move.  There was a sensation in my head that something wasn’t right – not necessarily bad- but not OK.  There’s a term called ‘couch lock’- and that’s what it feels like- being locked to the furniture, almost being part of it.  There was nothing about those sensations that will ever be desirable to me.

it’s useless for acute pain.  I broke my ankle a few months after getting my medical cannabis card.  I iced it, and had it wrapped (before getting an x-ray a week later- thought it might be a sprain similar to what I’d seen with adolescent patients who landed wrong while playing basketball).  I felt guilty using some Norco from 2014.  I used 3 full doses and 3 1/2 doses in 6 weeks.  And I hurt a lot more than was necessary.  I was diagnosed with gout a couple of weeks ago after a nasty flare that was a kind of pain I hadn’t felt before- tiny crystals in the joint felt like someone was sitting on a chair into the bone on top of my foot.  One urgent care a couple of months earlier, with milder but definitely ‘not right’ pain, thought it could be a blood clot (minus warmth, redness, swelling, or any other symptoms of a clot). The second urgent care a few weeks ago had a very astute nurse practitioner who knew to check my uric acid level, which came back very high.  I was on prednisone for 5 days, which jacked my blood sugars badly, but the prednisone did the trick to help that first flare. I’d already decided not to use the THC over a month ago, so was using my trusty ice packs, and the vintage Norco in 1/2 doses x 4 over a week.

Part of another disorder I have (dysautonomia) causes some similar symptoms to the side effects of THC, and I pay good money for the meds needed to help NOT to feel those symptoms. Why would I make it worse on purpose?   That is so bizarre and counter-intuitive. I don’t want to feel even a tiny bit stoned. I took microdoses after getting the CBD dose figured out (more on that in a minute), and still had side effects that are not acceptable to me.

I can see where it could be useful for severe PTSD, where escape is the only way to get any sort of relief from memories and flashbacks. I guess it could help with anxiety IF someone finds a strain that is consistent (those who smoke cannabis can get strains consistently, or those who want to make their own edibles and don’t care about consistent dosing). But for folks who are using that type of quantity, I’d hope they were housebound, and had access to someone to drive them anywhere they needed to go.  I never took a dose if I had to drive to an appointment.  I’d just have to hurt, and take a dose after getting home.  Once I did take a dose, there was never any desire to leave home.

There are people who have had positive experiences– and initially, my psoriasis was completely cleared up. Then came the hyperemesis cannabinoid syndrome, with months of nausea and eventual vomiting. I’m not a puker- that’s what put it together for me.  During 20 months of daily chemo for leukemia, I barfed once on day 8.   Because I didn’t have accurate info from a very well known CBD producer about the specific amount of CBD (not the total cannabinoid dose), I didn’t have the THC dose right- CBD helps counteract side-effects of THC. I also had a gallstone that was acting up, and that blended into the symptoms of the build up of THC because of using it daily, and I was SICK.  (The half-life of THC is very long, with some still showing up in drug tests more than 4 weeks after the last use, and with dietary changes that alter body fat percentages, more can be released months after the last dose- used to freak out the detox patients I took care of years ago).  I went through ultrasounds, CT scans, lab work, surgical consults, a bitch of a GI nurse practitioner, etc because it was thought that there was something going on besides the gallstone. I had THC continuing to build up, and  I didn’t know the accurate dose on that one brand’s product (if you use CBD, you want to see the exact amount of CBD per specific quantity of product- and third party testing). Everybody and their wombat is on the hemp bandwagon, and  saying how wonderful hemp oil  is, but non-CBD hemp oil (like on Amazon)  has no CBD, and is good for salad dressing- and you can get plain hemp oil for about $20 for a quart; the “therapeutic” hemp oil can be $50 an OUNCE- for essentially nothing). Hemp oil does have Omega 3 fatty acids, and hemp hearts (I like the ones without the little shells) taste a lot like pine nuts, but much smaller. Those are just flat out food- nothing specifically “magical” about it. Just another healthy fat source.

I’m a disabled RN; I’ve been an RN for 35 years, disabled for 15 years, where I’ve been my own full-time job.  Anything used to relieve symptoms MUST be consistent.  And I can’t get that with commercial medical cannabis products.  Some of the CBD companies out there are isolating other cannabinoids (CBG and CBN are two I’ve tried, and CBN has been good for sleep, though I only take it if I’ve been having trouble sleeping for a few days. Some brands of full-spectrum are out there- just don’t generally get the amount of each cannabinoid, so I’m not a fan of those). I don’t need a state-issued card for CBD. I get it online. Just like any herbal supplement.

And that’s what they are.  THC and CBD are not medication- which left me confused when talking to my pain doc during my visit. When I got home, I realized he hadn’t seen the way I’d printed out my list of medications and supplements, putting the CBD in the same area with vitamins and Co-Q 10, under a line of *****, separating the medications from the supplements.  The person who filled out their form with the list I’d typed up didn’t need to keep the typed one- so I agree with my doc, but I was scratching my head for a few minutes, as it seemed like he felt I considered THC and CBD to be actual medications. I agree with him on the characterizing THC and CBD as supplements. They are not medications. People use them like medications, but there are no studies proving efficacy, side effects, contraindcations, doses, longterm impact,  etc- and that’s what those of us who have used medical cannabis signed up for.  We knew it was an experiment, but desperation will lead people to anything that could be a source of hope.

I needed to try it. I wanted the hope of something different. And now I know.  For me, THC is unpleasant, and ineffective for what I needed it for.