Friday, December 8, 2017
This piece has taken me forever to write. I am so angry and frightened for my kid. Not what I wanted to be doing at Christmas time. I wanted to write a funny piece about getting ready Christmas. I have totally traumatized Hippie Pants' two year old, Honey Badger, with a phone call to Santa feature on my echo which was hysterical even if her mother did not think so. (Hippie Pants lacks a certain kind of sense of humor.) I thought about researching another "what on earth makes a good gift for a disabled teen?!?" article. I was gonna title it Not Another Effing Teddy Bear (hint- if they're verbal get them an echo dot from Amazon, less than 30 bucks and opens up the world to them). BUT JESUS, MARY, AND JOSEPH, WHAT HAS GONE WRONG WITH EVERYONE?!?!
Does everyone realize exactly what a travesty and horror this latest outrage from Washington is? I get we are exhausted and practically numb. That is, in part, how dictators operate. (Hint- they are exactly like cult leaders or abusive spouses- they all work from the same psychological book of bully tricks.) But two things coming down the pike should scare the shit out of everyone. The first, this monstrous tax bill. Congress is just not setting up a way to completely reward the rich. They are setting up an excuse to gut social security, medicare, and medicaid. The elderly and disabled will be the first to take the hit. You worry about your elderly parents or grandparents now? Imagine what it will be like when they are in danger of freezing to death or starving to death. Or cannot afford their medications at all. Don't even get me started on what this could do to my kid. My daughter has to be tube fed a specialized formula that can easily cost upwards of 30 THOUSAND dollars per year. Or starve to death with in about two weeks. While I watch. She is on, right now, 15 medications. Wanna know how long she could last with out them? Or exactly how much pain and suffering and torment she would go through until she managed to starve to death? Or die of seizures? Or aspiration pnuemonia? Because that is without a doubt, her future without medicaid.
And this is totally acceptable to representatives in Congress because the GOP has sold it soul to the libertarian wing of their Party. You know, those morons who love talk about starving as "freedom" and adore Ayn Rand. (For a really interesting read on Rand, please google "Ayn Rand and satanism" Those two things have a LOT in common.) Or perhaps just google the treatment of the disabled in institutions in America. If that does not change your mind about insurance paying for community services, then your soul is damaged and you need more help than I can provide. (Perhaps a priest and a lot of holy water would help.)
The second thing we should be umm er, concerned about is the idea floating around DC started by Erik Prince, the founder of Blackwater and brother of Education Secretary Betsy DeVos. Mr. Prince has proposed a private spy network. Let that sink in. The brother of one of our Cabinet members has suggested starting a SECRET POLICE.
In this season of holiday after holiday for religion after religion that is meant to be about bringing light and hope and love to the world, we seem to have all lost our damn minds and are in danger of losing what is left of the American soul. How much further down this awful rabbit hole do we need to go before we find our humanity again?
Tuesday, November 21, 2017
Well now,the holidays are well and truly here. I am no longer the only early bird with their tree up or porch lit. We keep falling further and further behind on day to day work. And just to nail the true traditional Feistopian holiday themes of love, peace, and soul shredding panic home, there are now four snotty noses running around our house. (See what I did there? snort. You're welcome!) Since I am now bathing all you weird, germy people in hand sanitizer and thieve's oil anyway, I thought I could share three quick recipes for home made hand sanitizer for holiday joys. Have a great Thanksgiving and don't forget to remind yourself of all you are grateful for. (I am grateful that you WILL all cough into your elbows and keep your germs to yourself.)
Mix together :
1/2 cup aloe vera gel
20 drops thieves oil essential oil blend
Keep in glass jar
Thieve's Oil also goes by four thieves, four knives, robbers, four gurus, etc. Smells fab and said to boost the immune system.
2 oz Witch Hazel
2oz distilled water
10 drops essential oil (lavender, eucalyptus, thieves, frankincense, orange, or a mix of any of these)
Place in 4oz spray bottle
1/2 cup aloe vera gel
1 and 1/2 cups rubbing alcohol
25 drops essential oil (again lavender, thieves, eucalyptus, orange, etc.)
Place in a pump bottle.
Happy Thanksgiving. Stay healthy and sane.
Monday, November 13, 2017
So, it's been a few weeks or so since I posted. We've had five doctors' appointments, 15 hours of driving back and forth to said doctors' appointments, two more tests scheduled (including our FIFTH sleep study in the past year), three more medications (now up to fourteen) and we put our Christmas tree up. (You're welcome neighbors!) Goo has been blasting carols since 12:01 November 1st. Also, just for sh*ts and giggles, I think Feisty Pants is a touch high. The neurologist says she is NOT high. It's just that "grogginess" and "staring into space" can be "passing side effects of starting a new seizure medication." (The same can said for being high, but what do I know?)
But anywho, it is, thankfully, November. The fun frenzy of Halloween is over. The Christmas rush is not on yet. It's not officially the holidays because no one has thrown up yet. It has gotten chilly. (YEAH!) The clocks have been turned back. (Double YEAH!) We only have one more out of town doctor's appointment this month (crosses fingers and toes). The long term prophylactic antibiotic seems to be doing it's job. I do have an official crap ton of insurance paperwork to do soon but that should open up avenues for Feisty Pants to get some more therapies. And no one seems to have voted for the apocalypse this time around.
I am hoping this sensible streak will continue. I am in love with November. It's chilly. There are no pressing holidays other than Stuff Yourself like a Turkey Day. Twilight comes earlier and lasts longer. There's football and pumpkins and last minute yard work. But nothing pressing or evil or overly hectic. As long as November stays kind and does not become a fickle bitch, we can all just enjoy this grand in-between time. So let's all throw on our comfiest, ugliest pj pants and grab a cup of cocoa. We can all just cuddle on the couch, argue over whose team sucks the most, and long for the glory of snow.
Monday, October 30, 2017
Happy happy Nerdoween! The weather has finally turned chilly. My roof is finally done. (I am literally and metaphorically grateful for the roof over my head.) The Feistymobile seems to be chugging along nicely. Best of all, next Sunday we turn the clocks back to where they belong (HOLLA-LUJAH!) and I may just get an extra hour of sleep.
Now all we gotta do is get those pumpkins carved and finish everybody's costumes in time for tomorrow. Fiesty Pants is simple. She is all done thanks to the generosity of Auntie Awesome Pants (thank you!!!) who sent her a unicorn kigarumi over the summer. I expect it will become Feisty Pant's pjs, costume, formalwear, and uniform for all occasions this winter. (It's warm, it's soft, it's a pretty blue, and it has a built in horn.) As for everyone else, well now's the time for the last minute nerdoween frenzies. (Cue screams and maniacal laughter and rolls of thunder.)
So if you're also always a day late and a dollar short like us, here are some last minute links to help you escape the twin beasts of procrastination and disorganization. Good luck and Godspeed.
PumpkinPile 2017 Hundreds of stencils here
Society 19 Adorable Pumpkin Carvings Cute and unusual
Make Use Of- creative pumpkin stencils Some more intricate ones here
Last minute Costumes:
Think inside the Box- Eight cardboard box costumes
HGTV Easy White T-shirt Costumes We all can scrounge up a white t-shirt
Tuesday, October 24, 2017
So, here it is Tuesday again. Must be Belgium, or in our case Syracuse. Seriously, we seem to be running to Syracuse (or, occasionally, Philadelphia) every Tuesday. Orthopedic surgeons (we see two currently), infectious disease doctors (that one is a whole team), pediatric neurologist, ENT (for Botox), physiatrist (more Botox), low vision specialty ophthalmologist, gi doc (g-tube), and today’s flavor, pulmonologist. I swear we spend more time in cars than an Uber driver or James Corden.
And those are just specialists we see regularly. That doesn’t include her regular pediatrician. Or therapy (physical, occupational, speech, and visual). Or appointments with equipment vendors, or social workers, or state health department workers, or the pharmacy. Or all the paperwork from all of the above. Think of the paperwork you fill out for your doctor. Add a dozen more medications, forty plus hospital stays, a gazillion surgeries and illnesses. Times all of that by all the people I just mentioned. Finally, add six more pages just because. And whatever you do, don't forget to sign extra paperwork so all these docs can talk to each other, the therapists, the school, and her nurse. And have copies of EVERYTHING to give the nurse and school.
Plus Feisty Pants is on a dozen or so meds that we have to administer over the course of a day. Plus FP has to be hooked to a food pump six times a day. Plus she has to be suctioned at truly random intervals. Goo and I sleep in shifts to accomplish all this. Now add all those other creatures you love, family, friends, pets to take care of. A house to run. (Feisty Pants alone generates a load of laundry per day)
Plus all these out of town runs take two people, so Goo has to give up sleep which just makes him a joy to be around. And we have been sitting here in a crowded, overheated, little room for an hour now waiting. ( I just dare any doctor's office to threaten to not see her if we are ever late. I will turn into an utter banshee over that little bit of arrogance.) Something is going on in one of the other patient rooms. Doctors keep gowning up and masking and running in and out looking concerned. I cannot even complain. We have been that room often enough. In a few minutes, the doctor and nurse will walk in and over the course of the hour (yes, HOUR) one of them will casually say, “Oh, you don’t work?” to me. I will simply explain the Feisty Pants is my job. I won’t hit them or yell or anything.
This frigging day better end in dark chocolate though or all bets are off for tomorrow.
Monday, October 9, 2017
I was unsure whether to write this post about our long, infuriating slog to try to get a new wheelchair for Feisty Pants or to complain about whoever forgot to turn off Summer's oven. But frankly, even though this wet, sticky, humid curse of a summer will never end, even I am tired of hearing myself complain about it. (Honestly, it's like living in the Devil's armpit.) Surely it will either end soon or kill me through sleep deprivation so won't be much longer either way. So since I am a little tired and crabby (What? I said little and I meant it, I just smell like brimstone right now is all.) I am going to write about trying to get FP her new wheels.
Since Robokid had her spine totally rebuilt this summer, part of which included anchoring her rods into her pelvis, she needs a completely new chair. Her old chair was rebuilt, but still does not meet her physical needs. It has been three years since her last completely new chair (as opposed to rebuilding the seat only). Shriner's did a complete wheelchair evaluation and wrote the doctor's order and letter of medical necessity. These were then sent to the vendor. Who did nothing. For 14 weeks. And didn't tell that he wasn't going to submit it. I had to hunt effing jerk down myself and ask what was taking so long. He claimed he had tried to get a hold of the PT from Shriner's but she did not get back to him. When I talked to the PT, she informed me that she had indeed talked to him AND told him if FP's insurance refused to pay, Shriner's would. And yet this vendor STILL refused to submit. He finally tried to set up an appointment with us so "he could explain and repair her current chair." That we had already had rebuilt. I told him I was not interested. Either submit like we had asked or give me the paperwork. (Those orders and the letter of justification.) Which he then sent to Shriner's (not me) and told them I had fired him.
We have found another vendor. We'll see how this one goes. But the appalling arrogance astounds me. I have seen equipment vendors refuse to submit orders before, but usually only if they fear they won't get paid. This man was told no problem, he'll get paid. And yet he still wouldn't do it. So tell me. dear readers, why did this jerk do this? It was not about not getting paid. Was he offended by me, a mere parent(and a female one at that) daring to challenge his authority? Was he covering up for something else- did he screw up her billing before and not want her insurance really looking at it? For the life of me, I cannot figure out why this guy wanted to not only turn down a sale but try to actively sabotage her getting to another vendor.
Honestly, if this zombie summer doesn't shamble along soon or we don't finally get out from under all this nonsense, I will be asking you all to get me a hat to pass around for bail money.