It is 11am, and I realized that spiderwebs were taking over my blog. So, With nothing of great substance or import to write about, Today’s entry is…My Schedule For Today.
It is 11am (when I am starting this). So far I have:
Gotten up at 4am needing headache med and cold cloth, collapse back asleep.
Up at 6am, taken meds, collapsed back asleep These are the anti-spasm ones that curl my ankle, toes, fingers and wrists
Up at 7am for first of 6 meals, more meds. Amazingly, with everything I take, none of it is particularly interesting to anyone but a fibro/MS patient with a bad gut. Until some idiot discovers a way to make meth out of laxatives or tums, my meds are of interest to none of the thieves.
By 9 am I was sitting up, talking over the day’s plans with Brian, baby talking to puppies, waiting for heartburn from breakfast 1 to calm down enough to get out of bed.
By 10am I was at work. Typing, copying, etc. Like all home workers dream of, still in my scotty dog printed PJ’s and Old Memere style velveteen slippers. Yep, it is as amazingly fun as you think it is. Sorry to all the Dilberts out there sweating in suits.
Remaining on the Schedule:
help Brian get his state benefits re determination done, a God awful process of rounding up papers and then standing in line at welfare office. In his case, it is to get re-approved for his home care services for another year.
When the ministry was going full bore with 150 members I would usually do this with members at least three times a week. The big difference between our ministry and other agencies is that we would actually go stand in line with the member, and help them understand the muffled voice of the staff member on the other side of the glass.
No one in our state had the brains to take all the loudspeakers and number board signs from all the closed DMV offices over to the Department of Transitional Assistance, so the poor workers have to just about shout to even have you hear anything through the bulletproof 2 inch glass.
About 18 months ago, the state launched NH Easy, a web based application to do all this stuff online, but even 18 months later it doesn’t work for a huge percentage of taxpaying customers.
If we are lucky, this will be a quick trip, as we never, ever go Monday mornings. Every single person who has had a problem with an EBT card, a breakup of a relationship, a new baby, or the lights shut off between 4pm Friday and 9am Monday all converge on the place at once. No one st the state legislature has figured out that having extra windows and part time staff for Monday morning would make the entire system more efficient and less costly.
working on a spreadsheet for a business project related to the Subdural Blues Media Company my friend and I started last fall, then had to stop while I snow shoveled my way into being bed bound more than any of the last three years. This os something that will probably only take about 20 minutes before I discover that cell b26 needs a number that I will have to go dig through a bunch of files to find. No biggie.
finish reading about three free software packages that will track who is reading/sharing what on the fb group, hopefully enough to decide on one and start using it next week. I get good feedback based on private messages and posted comments, but I really need a way to get hard stats. With WordPress, I get all kinds of stats for free with the built in functionality of the application. Google + and Facebook? Yeah, as if.
Maybe get a chance to talk with a friend who is tech savvy enough she may be able to “cover” 3 hours a week of watching the fb and google+ posts on my 1500+ group for me, in return for a “moderator” title and a bunch of job reference letters. Anyone else interested in such a deal, private message me!
Fill in addresses on 4 more invites and mail them, although already know they are coming, they will need to bring the country fair reception tickets with them. Wedding is still kind of a pressure cooker, but also getting exciting seeing the calls etc coming in of who is coming.
Read at least 10 pages of The Eucharist Yesterday and Today by Basil Pennington (part of my acolyte / sub deacon homework) and a welcome break for my brain from the number crunching. If you are a Catholic of any type, I think it is definitely going to be on my Goodreads recommendations list.
Houseclean the bathroom because my aide is out sick going on two weeks, and some things just can’t wait. Unfortunately, this one task is going to take 40 minutes and require enough bending and twisting it is going to seriously skyrocket my pain level…which is why my aides are supposed to do it. Hopefully however I will be able to pul it off without falling, like I do if I have to do thinks like get cobwebs off the ceiling.
This whole aides/LNA’s/PCSP’s thing is extremely messed up in NH, so a cripples greatest fear is that the aide will get seriously sick. First, the pay is so low all of them qualify for welfare except the married ones with no kids and spouses who have really good paying jobs. They are great aides, but they generally only stick around until nursing school gets so busy they become full time students.
For the rest, the state of NH has strict rules that you can’t get welfare unless you are permanently disabled or in school, working, or in a vocational program. There is no free ride here. They put hundreds of welfare to work participants through LNA training, but slashed the daycare subsidy so scores of LNA’s are now unemployed or underemployed because if you earn $10 an hour doing home care, but pay $7 an hour for daycare, you can’t buy gasoline to get to client’s homes. Close to 90% of the Home Care Agencies running in the state do not provide a vehicle, travel reimbursements, or any of the things that Merry Maids does, which is probably why every year at least 1% of home care aides decide to go work for Merry Maids and drive around in yellow station wagons to clean rich people’s homes.
I sent some state reps two great ideas to solve this.
Idea #1: Lots of the folks getting home care are old Grammas and Grandpas who own their homes, and are struggling to cover the taxes. Lots of LNA’s and the unlicensed versions PCSP’s are either close to homeless or already homeless, because it is becoming near impossible to own a car and rent an apartment if your take home pay after daycare is only $3 an hour.
So, pass a law that gives the Grandparents who need home care a tax break if they let the LNA or PCSP live on the property in a camper, tent, or in their car. Give them a second discount if they provide the LNA with a porta potty and a hose hookup so they have drinking water.
BAM! Better home care, less homeless LNA’s, Grandma’s not dying from the de facto state death squads the Tea Party put in in 2010. No takers yet….but I am grateful to the two democrats who said it is a great idea, especially since our country homeless outreach usually can’t do more than provide a tent when an LNA becomes homeless anyway.
Idea #2: The two democrats also liked the idea that Home Care Agencies not be permitted to hire bunches of LNA’s and PCSP’s, and then give each one 2 to 10 hours a week. I met one LNA who had to sign with three agencies to get the minimum 30 hours a week of paid work required by the state so she could continue to get food stamps and Medicaid.
Do you think these ideas are good ideas? Awesome! Copy and paste them into an email to your state Reps and state senators in Concord, and take a few copies with you when you are out doing errands and run into the folks running for office.
If anyone has an idea for a bill requiring Home Care Agency owners to be LNA’s, and to cover the shifts when the staff calls out, that would be great. So would any ideas for day cares that are open early in the morning or late at night, because some cripples really do need help at 7am. Waiting in bed with a full bladder when you are 80 years old from 7 to 9am is really not a nice thing for us human beings to be doing to cute little old Grandmas. Lots of towns would save lots of money on 911 calls too, if getting an PCSP or an aide to help you get in and out of bed at 9pm, or to do the housework while waiting to wake you up for the midnight pills you have to take wasn’t nearly impossible.
Do the midday medication routine with the sick puppy, Bo the Blogging Dog. This is a half an hour of veterinarian nursing. Also a reminder that Bo’s blog has three unfinished posts and that he wouldn’t be so sick if I could just get his gofundme page set up for his surgery to remove rotted teeth.
Water the veggies and flowers…using the splitter and diverting system I designed to connect hoses to the shower. On the good side, we have tomatoes! And Peas! Hurrah’s! Half of whatever we harvest goes straight to the freezer, so there is a chance we shall avoid starvation and scurvy this winter!
So that’s the list from now…Noon to 4:30pm
Next, I have to:
Eat. A lot. Because of damage to my stomach from MS, I have to take in 1750 calories of vegetarian dairy free food every single day IF I don’t get out of bed just to keep my weight steady. If I move, garden, clean, work, or exercise, the number goes up.
My Fitness Pal, a free android application, says that today I need to eat 2290 calories by midnight. So far I have had 400. So I have to eat 4 of the usual 6 meals, although now that I have cans of ensure 3 meals are 5 minute quickies, which helps immensely. It took my pharmacy and my gastroenterologist (stomach specialist) 6 months to get my Medicaid to approve it, because I still eat real food.
I turned down the state’s solution to have a tube surgically inserted into my stomach (they cover ensure for that no problem) because I didn’t like the idea of wasting $5,000 of taxpayer money for a surgery I didn’t need. Plus, I really like eating real food….isn’t that a right in the constitution somewhere?
I try really hard to stop working around 4:30pm so Brian and I can make a dinner and eat together. We love cooking together, trying new recipes, joking around. Most of the time we have an aide with us at least one night a week so that we can take a break from it or do the more complicated recipes where it is easy to miss a step and screw up the entire meal.
We try to make it a date night kind of thing at least once a week, with the kitchen table done up with candles, the electric fireplace on, lights dimmed and so on. I highly recommend it to couples who sit there lamenting they don’t have the money to go out on dates. Make your own date. It’s cheaper, the food is healthier, and if we push the table out of the way we even have room to dance to a slow dance or two. Make sure to put umbrellas in the drinks. Even kool aid is more romantic with a swizzle stick and an umbrella.
Most days I also try to watch Big Bang Theory…growing up, I was sort of a combination of two characters. The first is Leonard – always thinking, science oriented, accomplished parents…every night at dinner, I had to respond to my Dad’s question “So, What did you accomplish today?” – which was never a problem as I was always off learning or doing something.
My Mom was one of the nurses chosen for the very first ICU at Elliot Hospital in Manchester, later did nursing while also being a Treasurer for my Dad’s multi state company with two subsidiaries, and after going back to school to get certified in geriatrics came darn close to also being able to take the exam to be certified in Psychiatric. Nursing also. Instead she became an expert at Medicare nursing home Billing and record keeping, working as a consultant across NH. Dad started that company after being a Bank Asst Vice President and head of a national trade group. Among the things he did was run IT department that created the first interest bearing checking account, installed and ran one of the first ATM machines in the state, and hired women as computer operators and programers. Not bad legacies for either one.
The second character on Big Bang Theory I was like as a kid is Howard. Somewhere in the boxes of essays written longhand are a trove of stories about things I invented with empty toilet paper tubes, erector sets, and so on.
Then, once evening hits, about 9pm it will be cool enough to:
cook at least one meal requiring the oven we can nosh off for a couple days…leaning toward oat bran muffins with cranberries
sit at the sewing machine and try to get at least one more bridesmaid dress finished
help Brian, who will be ruffling lace and cutting out mini top hat brims while watching TV
Do the sick puppy’s evening medicine routine
get hubby to be and puppies settled into bed at 11pm
More sewing or if cool enough get two more wedding cake layers baked and frozen. Or both. maybe get the two granddaughter’s over-skirts cut and sewn, rendering them about 90% complete.
Brainstorm a wedding related problem. I need some sort of free readily available wire or similar substance to create the Victorian hoops for all 8 dresses. Wire coat hangers are leading the contest, but anyone with ideas is welcome to chime in. Just no way I can swing $215 to rent slips with the hoops already in them.
Do my evening check of my Facebook and Google plus groups/circles, check my email
Play three rounds of a silly bubble blasting android game to unwind my brain (or, set a timer for 15 minutes of Reddit and tumbler humor)
And God willing, say my evening office in bed, turn off the lights, and go to sleep at 2 am.
At 6am, first alarm goes off to take the first of 6 medications…so much better than old regimen of 9 med times a day (Thank God for whoever invented estrogen gel and those arthritis patches with menthol!) And I start the entire thing all over again.
About once every two weeks I take a day off and sleep and rest. That was yesterday. It was cool because my stepson was here, and even though they wer gone fishing most of the day, we got to hang out and talk about Disney TV movies. Actually looking forward to taking 2 ½ hours off to watch “How To Build A Better Boy.” Maybe even invite ex-stepdaughter Mary and some other kids over make a mini party out of it.
OK, time to post this, share it, and cross it off the list. While gobbling down spaghetti and sauce and holding a sick puppy.