SAVE THE INTERWEBS!!!

WTF is Wrong with Us?

                  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?

Three Variations on a Holiday Recipe

             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.)

 

Version one:

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.

 

Version Two:

Mix together:

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

 

Version three:

Mix together:

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.

 

 

 

 

Ahhhh November

                  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. 

It's the Great Pumpkin, Feisty Pants!

                       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.

                       

Pumpkin Stencils:

  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

   DIY Network Easy Kid's Costumes 

   HGTV Easy White T-shirt Costumes We all can scrounge up a white t-shirt         

                         

If it's Tuesday, this must be Belgium

            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.

           

Are you sitting down for this one?

                   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.

Tunnels

          So, it's only been a million years since I posted, or six weeks give or take.   I guess I can stop pouting, um errr, sitting with my feelings for a bit.  (What?!? I was totally not pouting at all, honest.) But it's been a very long summer here in the Tired People's Republic of Feist.  Feisty Pants has now had three spinal surgeries in two states.  (Only one of them not planned!) My roof still has a big old tarp on it. (I'm sure the roofing company  will get to us any day now.) We waited for 14 weeks while some jerkoff, um err, I mean wheelchair vendor, no I really do mean jerkoff,  made my kid wait while he did NOTHING. And the sycophantic prostitutes in DC, um er, I mean our completely trustworthy representatives are trying to take away her health care. Again.  If it wasn't for the new catastrophe of my car dying I'd think I was in a low rent version of Groundhog's Day.  Except it's an endless depressing summer instead of Punxy in winter.

            But enough whining, really I'm almost fed up with myself.  The roof will get done.  (After all, they want my money.) The last surgery (to clean out an infection) was a success. The picc line she had for three weeks is out. If FP is on antibiotics for life (not kidding on that one), it really is a minor price for good health and a straight back. She already takes a ton of meds.  One more really isn't much. Feisty Pants is back to school and flirting with Boyfriend Pants.  I knew a guy who knew a guy (Take a bow, Hot Pants) so the Feistymobile should be up and running in a few days.   Surely this godforsaken heat cannot last much longer.  October has simply got to come and bring with it chilly nights and pumpkins and ghosts and sweaters and a million other things I will especially grateful for after this crazy, sweaty debacle of a season.   Heck, it even looks as if this latest attempt at institutionalizing depraved indifference to human life might fail. (Don't count on it though, keep calling and tweeting and emailing. Make sure they know exactly what it will cost them to harm our most vulnerable loved ones. **cough killtheirdamncareers cough cough**)

              So I think I will take a risk and get off my whiny butt. It's about time things got back to whatever passes for normal around here. We've got Halloween costumes to get (Feisty Pants wants to be a unicorn. She even talked Goo into being Unicorn Poop. FP thinks she's hysterical.)  We have a new wheelchair vendor to harass. (That will be a whole new post.) We got a bunch of appointments coming up. And the holidays are right around the corner. In other words, we do kind of see our version of normal at the end of the tunnel.  (Please don't be a train.)

What We Did on our Summer Vacation

                 Well now, it's been long slog through a hot, sticky summer, hasn't it?   Spent a million hours worrying and a million more being grateful. Straightened out a kid. LITERALLY.   Almost lost, but then didn't,  my child's healthcare and future.  (THANK YOU RESISTANCE)  Had it rain inside my house. Almost broke the nurse. (ahhhhhhhhh)  But we have made it through.  Summer's almost over and I'm feeling more grateful and relieved than I thought would be possible. 

                So, thank you to Shriner's Children's Hospital  You really do perform miracles.  Thank you to the surgeons and nurses and therapists and social workers.   You were amazing.  Thank you to Hot Pants, nurse extraordinaire.  Your skill and dedication is amazing.  Thank you friends and family who were patient and understanding when we were sleep deprived and forgetting to call.  Thank you to our house insurance for agreeing that it should not be raining inside and covering it quickly.  Thank you Hippie Pants and company for keeping my house together and the zoo alive whilst we were gone.

                And since you are probably wondering what on earth "literally straightening our kid" means, here ya go:

Before:

First Procedure:

Second Procedure:

After :

It's been long. It's been exhausting.  It's been amazing.  And I am so very grateful.

There and Back Again

            Well now, it's been a million years since I posted. Or three weeks, whatevs.  We are finally home from the great hospital expedition of 2017.  Robokid is healing up nicely, barring a mild thrush infection from all the antibiotics.  I do wish we were managing her pain better but opioids are out - depresses her breathing, as are nsaids -will affect how her hardware/spine heal and bond together.  We are stuck with tylenol and distraction for the time being.  For the most part it's alright.  Feisty Pants is feisty as hell and tough as nails.  But from around 6pm to 7pm every night, she sobs.   We are not quite sure why.   My guess is pain but it could be pain plus fatigue or even just the emotional effects of having, as the surgeon put it, her entire nervous system tinkered with.   So her father and I, along with her nurse, second guess ourselves, hold her hands, and feel like horrible human beings.   Until about 7pm, when she magically stops and the Universe becomes wonderful (or at least, normal) again.

             Other than that, it's just really weird coming home from a long hospital stay.  Feisty Pants has had so many and they never seem to change.  Your world is turned topsy turvy, often with no notice and breakneck speed.  Then the day to day hospital life becomes it's own weird little routine.  Then you are shoved back home.  It's like coming home from war or waking up from a coma.  (I'm at least half right there.) The world is exactly the same but yet for you and yours, it isn't.  The house looks the same.  The world is the same.  But you somehow are different and yet you need to find a way to fit yourself back into your old life as if putting on a pair of old, comfy shoes.

               In an odd way, it's a little comforting that my house tends to a little chaotic.  I may be bitching and screaming and kicking as I put my house back together, and unpack, and shoo out the various lunatics (two legged and four), and catch up on three weeks worth of laundry. I am definitely bitching as I try desperately to catch up on paperwork and make doctor's appointments and get even more paperwork now made necessary by FP's surgery/hospital stay/shaman treatment/exorcism.  But it all gives me a way to slowly catch up with myself psychologically until I start to see light at the end of the tunnel, and realize we are truly home at last.  

             

              

The Language of Healing

                     Well,  now we are on our third week in Shriner's.  The surgeries are done.  The rods and screws are in. Robokid is doing pretty well considering she was bisected and rebuilt. Twice. She looks fabulous with a capital FAB.  Before she looked like Richard III straight of the Shakespeare play. Now she looks about Richard III in real life.  The breathing tube is out.  For the second time.   She has been moved out of the PICU.  For the second time.   Weaned her down from heroin to heroin lite. Weaned her down from two iv antibiotics to one oral one. (Oral being loosely defined as whatever we can shoot into Feisty Pants' g-tube.). All in all, it's been pretty smooth sailing.  

                      So, now we come to the actual hard part.  The physical therapy.  The respiratory therapies designed to get her lungs back on track after two major surgeries in eight days. The part where she is sore and cranky and mad at us for doing this to her.  The somewhat boring, really hard work of healing and rehab. The hospital staff now has the unenviable task of teaching Feisty Pants to not throw herself out/off of things that are annoying her.  And of teaching her cranky parents not to break her.   But while we doing all this relearning of how to best manhandle Robokid, I've noticed I'm slowly picking up on the medical lingo and thought I would pass some of it along.

Doctor lingo-

What they say:                                                   What it means:

I'm a little concerned about....                            This is freaking me right the eff out...

I'd like to explain....                                            Hear my wisdom, Mortal.

You have to understand....                                   but you won't, idiot.

Nurse, where did you put (insert item here).      Nurse, I lost (item) again.

Nurse, I've charted that on the computer.            See, I didn't forget! This time.

Nurse lingo-

What they say:                                                    What it means:

Dr, when did you want me start (procedure)?     Moron, we need to do it now. Right now.

Well, that's just our Dr. So-and-so.                      Who has the social skills of baboon.

Well, now that's interesting.                                 How the eff did you manage that!?!?

Ok, dr., I'll get right on that.                                 Get out of the way so I can it done.

Hmmmmm....                                                Freak out now. Right now.

                    Now, if I can just figure what the hell is meant by the sign in the bathroom telling people not to throw away "bowel programs" in the trash.  

Two Parts of a Whole

                Another bloody Monday.  Literally.  Today was stage two of Feisty Pants' scoli surgery.  They removed a wedge of bone (L1), straightened her pelvis as much as possible, dropped in the rods.   They say it went well.  They noticed a slight tear in the dura which they fixed but that may mean her drainage tubes will need to stay longer this time.  They removed the halo so that will be a relief once she wakes.  She is intubated still.  They probably won't be in a hurry to remove the tube. She is back in the PICU already.  We are just waiting for them to come get us a bring us back to her. 

                The above paragraph doesn't seem like it's long enough to describe the day.  I got up four frigging thirty this morning.  I've been sitting here basically waiting since five frigging thirty.  I've gotten coffee.  Ate lunch.  Argued superhero trivia with Goo.  Did my yoga on the floor of a hospital room.  Checked my email. Found a view of, then argued with Goo about Eastern Pen. (Eastern State Penitentiary, an allegedly haunted prison)  Did all those little piddly things one does when waiting for time to pass. Time is not passing fast enough today. This last half an hour has taken at least a year. (It has too.  And that did make sense. You don't know. Shut up). It's only four pm.

                  Hospitals have such a weird aura.  One half knuckle dragging, nerve biting, adrenaline fueled roller coaster.  One half serene, ancient temple of healing. We just left the waiting room and now are sitting in Feisty Pants' room in the PICU. Straight from jumping at every approaching human looking vaguely medical to quietly enjoying watching her sleep.   The halo is off without any mean looking battle scars like we had envisioned.  Just a few little circles.  I'm gonna have to work hard to spin this into her "the girl who lived" story.  (I know! The scoliosis itself will be the lightning bolt shape. Feisty Pants and the Prisoner of Insurance Regulations here we come!) Her spine is still a meandering path but so much better than it was.  It will never get straighter.  But more importantly, it will never get worse. 

                    And now comes the hard part.  The uphill climb of healing.  Of therapies.  Of pain and struggle.  Of the "why is this so damn unfair"ness of it all.  (I cannot even complain when she hits that stage.  FP has damn well earned it. ) But that will start in a few days.  Right now we catch our breath.  Right now we relish the feeling of gratitude. Right now we sit and watch the miracle of Feisty Pants sleeping peacefully.

Stick a Fork in Me

              Well.  It has been long week in Feistopia (Pantsadu? United State of Feist? First Feistypeoples Republic?  I'll stop now.) Feisty Pants had the first stage of a two stage spinal surgery for her severe scoliosis.  She's had her back split open from stem to stern and screws put in. She had a halo traction device screwed into her skull. She had a central iv line, drainage tube, and four iv's put into her "I'm not short, I'm fun sized" sized body.  She has staples from her cute little tush to her neck. She has fifteen pounds of sandbags on a pulley system hanging from her halo. She looks like an oh so adorable steampunk version of Frankenstein's monster.   Thankfully, she was intubated and sedated for the first four days so she didn't have to truly feel most of it.   She is doing remarkably well, considering.  No signs of infection (hallelujah), vent is out, and she is propped up in her (now rebuilt) wheelchair.  She only pulled two of the iv's.  FP is off the heroin (fentynyl) and down to heroin lite (oxy) She even made it out of the PICU (at least until Monday). 

                Monday we start all over again. The second stage will involve cutting out pieces of bone and dropping in rods to straighten her as much as possible.  The halo will be removed. Feisty Pants will again be intubated and sedated at first.  Once her lungs are recovered enough from the second shock to her system the hard work will begin.  Therapy.  Treatments for keeping her lungs optimized. Pain killers to be eventually weaned.  A body that doesn't really understand why it's being mistreated so.  A mind and spirit that just knows it has to knuckle down and gut it out one more damn time to merely keep going. And in the meanwhile, her father and I sit here watching her, vacillating between patting ourselves on the back for making it finally happen and wondering how awful we are for causing her so much physical pain. 

                 We were lucky to get her into Shriners.  This the tenth hospital we have taken her to. (I think.) It's fabulous and I am impressed almost beyond words.  And I'm waaaaay too jaded to be easily impressed with the healthcare industry in general.  But while we sit here counting hours, days, and major milestones for my oh so vulnerable, oh so beautiful youngest child,  our supposed leaders want to take her health care.   They don't even have the decency to call it what is.  A DEATH SENTENCE FOR DISABLED PEOPLE LIKE MY CHILD.   You bastards want to gut healthcare for the disabled. Make no mistake.  That's EXACTLY what is meant by lifetime caps on Medicaid.  They want to allow the disabled to suffer and possibly die to make rich people richer.  At the very least that is depraved indifference to human life which is the statutory definition of murder in the second degree. I pray to any and all deities that horribly monstrous idea dies the ignoble death it truly deserves. But if it doesn't, I pray that the first family who has to mourn and grieve because of Congress's hubris and greed sues the living shit out every single Congressperson who voted for this criminal act personally in a huge wrongful death suit.

               How dare they assume some rich person's money deserves more respect and care than our families, our loved ones, our children? How fucking dare they!?!?!    

In which Feisty Pants is not worried at all

               So, it's been a few weeks since I have posted.   Sigh. I tried. I really did. (Shut up. I did too. You don't know.)   Feisty Pants and I researched fun diy gifts for Father's Day. Okay, so I did tell her they would also make boyfriend gifts, but hey, that's just creative motivation.  We also looked up homemade healthy popsicle recipes seeing as how we all live in the first level of Hades now.   We even looked up info on why and how pets are so amazingly good for us in general, and special needs kids in particular.   I am hoping this will turn into amazing future posts because I sure as hell didn't get them written these last few weeks. 

               As I write this, we are sitting in Shriners Children's Hospital in Philly.  Feisty Pants is at this moment getting x-rayed.  She will having the first stage of a two stage surgery tomorrow for a severe scoliosis. We have had a crazy last month.  Clearances from some docs.  Other doctors who wanted to "check on her one last time before the surgery".  Tests to run.   Blood to be drawn, some of it even hers.  (Notice that we do not call her Complacent Pants.) Shopping for everything we will need while staying here.  Shopping for everything needed while Hippie Pants is staying at our 
t place. A million people stopping by to see her.  A million explanations on why I am spraying them with purell.  And to top it it all off, Feisty Pants is not nervous at ALL, nope, nuh uh. She simply doesn't feel like sleeping this week. That's all. So apparently we don't want to sleep either. 

                But the crazy ride of the last few weeks is over.  We made the drive down to Philly with no problems.  We snagged a room at the Ronald McDonald House so that's one worry we don't have to own.  Admission went through with no problems.  Now we just wait.  And watch Feisty Pants worry. No wait, we will watch FP not worry at all.  She just likes sitting around giving everyone the patented Feisty Pants side eye and not sleeping.  Besides, Hot Pants, her nurse from home, has come down to hold her hand and make her feel brave -not that she needs it at all. And this hospital has the science channel and the game show network, so she knows how she'll be passing her time not being nervous at all.  I guess her father and I will be the only ones in the room who are worried. 

In which Feisty Pants is not horrified by the Universe

                So Feisty Pants has had a horrible, awful, no good week.  Just ask her.  It all started last Thursday when she had to go for yet another sleep study.   Somewhere. some poor med student must be getting a PH.D. in Feisty Pants' sleep habits, she has been studied that much.   They really are absurd on the face of them. Take a kid who may not sleep well, glue leads and wires all over them, stuff a Bane like mask over their face, take them totally out of any version of their comfort zone and then watch from another room to "help" them.   I don't know about other kids, but my feisty one has seen this movie on Syfy a thousand times over and it never ends well.  So, yeah, she's really gonna sleep.

              And in order to get her to cooperate at all (Read that as no punching.) we have to bribe her.   With a shopping excursion as soon as it was over.  So no sleep the next morning either.   I don't care how many chocolate chip muffins and minion fries and lip balm you come home with.  Her sleep schedule is now all blown to hell and good luck getting her back on track.  Now mix in a sinus headache because it is raining pollen here. And hormones because she is fourteen.   And total appalled embarrassment because she has (gasp,  shudder) parents.  Two of them.  And they insist on talking to her public.   I don't know how she copes with it.  She's a saint, that one.

             But today, the stars have aligned and miracles have occurred.  The great Unicorn in the sky has smiled down upon her.  She got her ipad.  (This is a HUGE deal to a kid with garbled speech and she knows it)  The case came in BLUE too.  Her favorite color. And her miserable embarrassments, um er, I mean parents took her to the pet store as promised.  She didn't bite anyone at the sleep study either so she got four goldfish.  Whereupon she promptly named them John, Paul, George, and Ringo.   I was surprised and delighted by her choice. I asked if she knew who the Beatles were. "Yeah," she replied. "Hey Dude!"  I don't know if she heard the song wrong or just cannot pronounce Jude, but whatevs.  I'll take it.   Happy kid.  Happy Mom.  You'll have to excuse us as we ride off into the sunset.   Na na na na na na na na na Hey Dude.....

 

PS- Still looking for anyone who wants to share caregiver stories with a great advocacy organization.  Drop me a line if you're interested.

Calling All Caregivers!!

               In light of this week's disastrous new inhumane low from our supposed  leaders, I have to decided to do something other than (in addition to?) merely swearing and bursting into flames. Health care is an absolute human right, especially for the disabled and elderly.   I know of an amazing organization called Caring Across Generations (link below).  They work to advocate for families caring for elderly parents and disabled relatives. (They have also partnered with groups advocating for better conditions for paid caregivers in our homes with the novel idea of maybe treating care givers better makes for better care and thus allows the elderly and disabled to live at home and in our communities.   Shocking, right?)

               To that end, they have asked yours truly if I would mind trying to collect a few stories to help educate law makers and policy makers on what we, the families and caregivers, truly need.  This way they will be better able to advocate for us and our loved ones who need care. So, if you have a few minutes, and are willing to answer a few questions, please answer the following questions for me. 

               Simply copy and paste the questions into an email .  When you have answered, send them along to me at Feistypantsmom@gmail.com. I will pass them along to Caring Across Generations.  If you would be willing to give them your contact info, in case they know of any media who wish to follow up, even better!  The powers that be need to hear our voices.  They need to see our stories.  Together we will make this better place for all the feisty ones (young or just young at heart) and their tired fams out there.  If this doesn't apply to you, dear reader, but you know someone to whom it does, please nag them mercilessly, um er I mean, please pass this along.  The more voices, the better. 

              So, here are my nosy questions:

1)Who do care for, why, and for how long have you been a caregiver?

2)What joys do you experience from this?

3)What are some of your biggest challenges?

4)Is it difficult for you and your family to find the type of care needed?

5) How difficult was it to navigate the care system?

6)What do you know now that you wish you knew when you began this journey?

7)How has your experience of care giving changed the person you are now?

8) What do you wish society at large understood about your situation?

9) What one thing could be done to help you in your caregiving?

As promised, the link to Caring Across Generations: caringacross.org/

What to do when Spring has sprung too hard.

             So spring has definitely sprung here in the Southern Tier.  It's too warm to sleep with the windows closed but too cold to sleep with them open.  Stray cats are randomly singing arias at all hours of the day. It's rainy and humid so my frizzy, wavy hair is now Texas sized frizz. When it isn't raining, it's raining pollen leading to all sorts of sneezes, wheezes, and woes for Feisty Pants.  So if you and your feisty (or not so feisty) one are like us and randomly stuck inside for the afternoon and therefore totally dying from the tortuous boredom (Just ask Feisty Pants. She will tell you all about it.) here are four fun, sciency  (shut up- it is too a word) things to do on a rainy afternoon.  You can then claim this was all in the name of good parenting and totally not because it was fun and cool. 

            

1)Glow in the dark flowers:

  You will need: a clear glass (for a vase), yellow highlighter, a flower, water, knife, black light.

  Use a sharp knife to cut open the highlighter and remove the ink cartridge.  Squeeze/stir the ink into the water in  the glass.  Add the flower.  Allow to sit for several hours and then check with the black light. 

Full instructions here:Kiwi Crate- glow in the dark flower

 

2)Homemade super bouncy balls:

    You will need: corn flour, glue, borax, food coloring, bowls, measuring cups, measuring  spoons, bowls, plastic forks.

 Mix 2TBS hot water and  1/2 tsp Borax in a small bowl.

 In a separate bowl, mix 1TBS corn flour, 1TBS glue, a few drops food coloring.

 Pour the first bowl ( borax) into the second bowl  (corn flour) and mix everything until it solidifies.  Roll into ball shape and allow to harden for 10 to 20 minutes.

Full instructions here:Good Housekeeping -diy bouncy balls

 

3)Soap foam:

    You will need:  1 bar of Ivory Soap (must be Ivory), microwave safe bowl (large) or plate, microwave.

 Unwrap the bar of soap, place in dish and nuke.   It will take about 90 seconds to 2 minutes (depending on your microwave) to reach peak size.

Give it a minute or two to cool and then have fun playing with it.  Don't worry, you can still use it.  It will just have strange consistancy.

Full instructions (and explanation) here:Thought Co- Ivory soap foam

 

4)Upside down planter:

    You will need:  Clean soda bottle (2 or 3 liter), knife, seedling (tomatoes, peppers, whatevs)dirt, string for hanger.

 Remove label and cut off bottom of soda bottle. Ease seedling into narrow opening (the top of bottle).  Gently fill with dirt and hang.

Full instructions here:The Crafty Crow- upside down planter

 

So there you are.  Go be a fabulous parent and enjoy.  You could even reward your little scientists and yourselves with ice cream for all your hard work and learning.  It's what all the cool scientists do.

      

It's that magical time of year again

                     So, it's that magical time of year again.   No, not spring when all the stray cats thoughts turn to love and caterwauling on my porch and back fence, although it is that too.  No, not allergy season when the pollen falls like rain and a person's thoughts turn to sneezes and wheezes and itchy eyes, although it is that too.   No not even baseball season, where America's pastime has been gentrified beyond all common sense and fair play, although it is that too.  NO. it is IEP season, when teachers and therapists drown in paperwork and school administrators and parents gird their loins for the civilized adult version of the fight on the playground. 

                   For the uninitiated, IEP stands for Individualized Education Plan.  It is a contract that spells out goals and services that will be provided for a special needs student.  It is also a legal contract bound by various laws and regulations, so it is  (and should be ) taken very seriously.  Once a year, usually in spring from what I have seen, a meeting is held with all the teachers, administrators, therapists, parents, etc. to hash it out for the upcoming school year.  We are lucky in that we have found a good placement for Feisty Pants, so our meetings usually go rather swimmingly. ( I only swore ONCE this time!)  Plus I'm exactly the kind of pain in the ass parent who is fine with smiling whilst I nag the living hell out of everybody until we get a good IEP nailed down on paper.  But even when it goes well, it can be very stressful.  

                    So, to that end, here are a few sites (There are many- if these ones don't help just ask google until you find a site you like.) that have good IEP tips.   Hope your meetings are successful, not stressful.

1) Wrightslaw- wrightslaw.com

             I love this site.  Great tips for advocacy for your special needs kid.  Even great tips on conflict resolution.   (Check out "Playing 20 Questions with the Devil".)

2) Great Schools- Tips for a successful IEP meeting- Greatschools.org

              I like these tips.  They are pretty good for any stressful paperwork session.

3)Special Education Advisor- 'tis the season- Specialeducationadvisor.com

               Another good list of tips, especially for the perpetually disorganized such as I.

4)Wonder Baby's printable IEP organizer- Printable IEP Organizer
              Whaaaat?  A free printable organizer?  YES!!

PS- One last tip- Bring along a coffee.   It gives you something to do with your hands.  The caffeine helps keep you focused.  Also gives you a reason to stop and pause in case you want to think or not swear.                       

MRI Blues

              Soooooooo.....   here we sit in a radiology ward.  A simple procedure really.  Just an MRI of Feisty Pants' spine, the big hurdle before her upcoming scoliosis surgery. It unfortunately must be done under under anesthesia  (Feisty Pants will simply not be still for one)   so this meant a slog down to Philadelphia to get it done (most places will simply not put her under ). Honestly, this should not be a big deal.   We managed to get a room at the Ronald McDonald House.  We came down yesterday.  This should be going swimmingly.  But Feisty Pants and the universe seem to be laughing in the face of simple this week.  

            First, there was the rush back from the highway because we forgot her food. (For the uninitiated, FP is on a high calorie peptide based formula fed via g-tube.)  Then a five hour drive.  Then she decided that after a million tests and procedures that THIS one is the one she needs to be anxious about, so she didn't sleep last night.  So, none of us slept.  Now we are sitting in a radiology ward, where it's all hurry up and wait.  So, she is lying here on a gurney, getting more antsy and passing the time by kicking me.  You know, like you do.

             Annnnnnd, now we are back in a second room.  Feisty Pants, who hasn't been fed since 8 pm yesterday, is now hangry  and done with us all. We are supposedly just waiting for sedation.  Then they will take her back and decide where we will sit for the hour the procedure takes and the hour or so for recovery.  Hopefully before FP kicks a hole in the wall or totally bruises her knee attempting to kick said hole in the wall.

              Man oh man. Days like this are hard and long. And it's not even a scary ride today. This is a simple procedure with a complicated kid. But we are sleep deprived and hangry and shuttled around a rabbit warren of back alleys and corridors.  In about five minutes I'm gonna start kicking the wall and singing the blues too.

             Two hours after that...  We thought we were done when a  nurse and dentist came out.   But nooooo, seems they accidentally chipped her tooth when intubating her for the sedation.   So now they will re-repair it (what they chipped was a repair done on an earlier accident.) and then up to ICU for the night.   I am beginning to think the surgery will be easier than the testing.   We are in a good place.  They are taking good care of her.  Feisty Pants is not sick at all.  So why do I feel as if this week just keeps getting longer and longer?

             

  

     

Teenangster

           Originally, I was going to make this post be about tips for IEP season.  I plan on making that the next one.  (Totally adorable if you believe me.)   Then I was going to write one about survival tips for hospital stays.   I've done one or two before but a relative is inpatient right now so I was pondering it. (Feel better dude!)  But today we have had a semi normal day and I want to celebrate that.

            It started as an average school day for Feisty Pants.  She is fourteen now, so her school, whose curriculum includes what is known as "daily living activities" often includes doing things that simulate working life.  Today Feisty Pants worked at the "Prom Store"  The Prom Store is a simulated dress shop full of donated formal and semi formal attire where students going to the prom can choose an outfit to wear to said oh so important teenage occasion.  The kids get the items for free but there is whole process of going to the store and filling out some paperwork and then selecting/ trying on the dress, etc.   Apparently my kid had a frigging BLAST hosting her own little say yes to the dress event. (She gets that from her father. Seriously. I boycotted proms. Goo was a total prom skank.)  She had a communication device set up to ask if she could help,  to ask the students if they wanted to fill out a form, to say things, "Oh, you look nice"  or "How about this one?"    She even got asked to the prom by an older boy.  (You have to be sixteen to attend the prom at her school.)   She didn't mind- he was NOT the Boyfriend after all. 

            In fact, she a totally fine afternoon, in her opinion.  They even let her take a dress home too,  a black and gray spaghetti strap number with sequin embellishments.  All goth and girly at the same time.  Basically Feisty Pants' ideal dream attire. She was on a complete scored the best outfit high until someone asked Boyfriend Pants if he was going to go to the prom.  Boyfriend Pants is sixteen and can go.  WITHOUT Feisty Pants.  Who then decided the afternoon did suck after all.  And came home to tell me about it in NO uncertain terms.

             So, my fourteen year old girl had a totally adolescent day.  In which she had highs, thrills, lows, and outfit changes to match her mood swings.  And she complained a lot when she came home about it all.  And then demanded we buy her ice cream cake at the store the next day for her troubles.    Just like any other fourteen year old girl on the frigging planet!   I am officially calling this week a win and going to bed.   I wish you all peace, love, and ice cream cake.

              

Side Quests

        Greetings from Siberia!!!  Ok, not really. But we are having a lovely storm here on the East Coast, and I am gonna sit back and enjoy the ever loving hell out of it.  This week has just turned out to be a snow day for grown ups and I am grateful.

        You see, we are supposed to sitting in an admissions office at Shriner's Hospital in Philadelphia, as I type this.  Feisty Pants was supposed to be having the first of a two stage surgery for her scoliosis  tomorrow.  Obviously, that's not gonna happen.  Not because of the snow, but because the Universe sees fit to make my existence a trial by ordeal for someone with ADHD.  In the process of arranging for FP's surgeries, we have to {ahem ahem clears throat, opens locked room to reveal wizard's lair, unlocks ancient battered luggage with fangs as it tries to bite, removes dusty, arcane scroll written in ancient language with demonic aura, eyes roll back into head and begins to intone in magic prophecy}  " get a couple of clearances from a couple of different specialists.   Who shall then require several tests.  Which shall then send thee to more specialists.  Who shall require more tests.  And several machines to be placed in questseeker's home.  Which shall require more tests and other medical professionals.  And this shall take frigging forever and require you slay the evil dragon known as Insurance Requirements.  And several of these arcane wizards will be morons who want to send thee to  specialists to redo tests you have just done with the first batch of wizards. And in the meanwhile, time will pass and winter shall come and everyone will share germs so people will get sick, and someone (not saying who, but looking at you Feisty Pants) will be hospitalized and really slow this process down."  

           So, all the info has not been processed/gathered/fed to the demon of medical paperwork.  So the surgery has been delayed.    But since we are still waiting to get the last test done,  which by the way seems to include explaining to a doctor that Feisty pants does NOT need to see an ENT about getting her adenoids removed since she hasn't had them since she was six years old, the Universe has decided to cut me some slack. It has given me the loveliest of breaks.   Unlike all you summer loving freaks, I adore winter and snow.  We were stuck in Syracuse in a hospital for the two coldest weeks of winter and thus never got to enjoy it. You never really see the outside world when your kid is hospitalized. At best, you just see various parking lots between the room your kid is in and the room you pass out in. But today, oh today. I woke to about a foot of gorgeous snow on the ground, and a lot more on the way.  Goo made a fresh loaf of bread.  I have a pot of veggie soup in the crockpot. There was mini Dr. Who marathon on to keep FP occupied and happy.  I'm just gonna sit here and sip tea and absolutely revel in this in between moment the Universe has sent my way. Thank you Universe.  We really needed this.

Birthday House Rules

           Feisty Pants' birthday was today.  She turned 14.  Ruled the school.  Had a blast with Facebook messages.  Sailed through her bday dinner like a Roman emperor. ( In her honor, we made Cheweverything Pants a senator.) 

            So, since Feisty Pants totally slayed the day, I humbly present her rules for complete birthday domination.  You're welcome.

1) Know that you're cute.  Even if you're not. I don't care if you look like a rooster or Frankenstein or something from the Walking Dead.  It's your day so you're automatically more beautiful than all those non birthday having mortals. Own it. Wear your favorite birthday outfit.  Dress for the job you really want. Wanna be Batman or a unicorn?  Do it.  Feisty Pants chose a hello kitty tee, a tiara, and a screaming pink sash that proclaimed her the "birthday princess".

2) Be gracious. Kindly and humbly accept all the praise and adulation that is due you.  Of course those aforementioned mortals should be heaping good wishes, presents, and songs of praise upon you, but a good thank you and a nice smile will make sure they keep coming next year.   All it really takes is just a little kindness to keep your minions happy.

3) Do your homework in a timely fashion. Want dinosaur poop for your birthday? Make sure the gifter knows well enough in advance to order it from the museum store in time.  Want your boyfriend to get the perfect card for you?  Give his mom the right hints and you too can get a hello kitty card that perfectly matches your outfit.  Want special cupcakes with special icing? Throw that fit right before your mom goes to the store. Timing is everything.  Be prepared.

4) Last but not least, don't forget to have fun.  Throw the party. Have cupcakes AND a cake. Eat a giant piece of cake.  Split the cake with the dog.  Wear your new tiara.  And when the party is finally over, curl up with the dog on the couch and see who can happily snore and/or fart the loudest. (Hint, Senator Cheweverything Pants will win.) 

           There you go.  How to rule the birthday kingdom like the benevolent despot you were born to be.  Have fun and don't forget to keep your tiara on at slightly rakish angle.  It's cuter that way.

           

Same old, same old

               So, Feisty Pants is hospitalized again.  Which means I have a legitimate excuse, umm er,  i mean real reason for slacking off, um er, I mean neglecting the blog because I have been so busy.  Really.  I promise.  

              It started out as not such a big deal, a simple tummy bug.  But she couldn't keep anything down, including her meds so off we shlepped to the er. We expected everything to go rather swiftly, get an anti-emetic, go home to ride it out.  That was a week ago and we are on hospital number two right now

               Hospital number one had an idiot, um er, I mean overly cautious doctor who decided she was in respiratory distress and needed to be transferred to effing Timbuktu.  In a snowstorm. Seriously.  The first ambulance wrecked on the way to pick up feisty pants and we had to wait for a second one.  We almost wrecked at least three times on the way here.   I am curious as to why she was considered such a medical risk that it was ok to risk that ride, but during the 12 hours we were at the first hospital we saw no respiratory therapist and she received no breathing treatments or medications other than an antibiotic.   Call me silly but if you're gonna diagnose her with breathing problems shouldn't you also TREAT said breathing issue?  

                 Anywhoo, that's going to be an interesting conversation for when we get back home and talk to her pediatrician. For now, feisty pants is definitely on the mend.  The hospital life has become routine again.  We were lucky and got a room at the local Ronald McDonald House, so other than the forced isolation that being away from kith and kin brings (I am so bored at night that I practically talk to myself), I guess we are just waiting this one out.

No, just no

       Sigh...  I wanted to make this about cute Valentine's Day projects that aren't too babyish.  Feisty Pants is "almost fourteen harrumph" (read that with rolled eyes and your best teenage sneer) and has a boyfriend and is just too old for little kid stuff.  Except for really cute Valentines, and Hello Kitty, and puppies, and anything that makes her squee.  But every time I turn around, the world seems to want to wax the bottom of the hand basket we are going to heck in so it will slide faster.

       We have an idiot named as Secretary of Education, who seems to not understand about things like the ADA or the IDEA act or FAPE or have any effing clue about education being for EVERYONE and not just the rich.   We have a congress, full of people getting FREE health care that we pay for, determined to take away everyone else's.   We have an ignorant, sexist, racist leader who is worried more about his own power and prestige without any seeming understanding that political office is meant to be about public service, not private gain. And a gazillion jackasses following behind him who think it's now time for some weird orgy for bullying. 

            I am so done.  Seriously, stick a fork in me.   But while am waiting for that moment when I shall spontaneously combust, (and please let it be next to some d*ck who deserves to burst into flames with me...), I want to get a few things off my chest.

            1) There are NOT more and more people on SSI or disability benefits simply because they are lazy. Or are getting better at scamming the government.  If it seems that way, it's because more people with disabilities are living due to better medical care. (Feisty Pants is one of those people.)  And because better equipment means they can get out and about more. And just maybe,  because we no longer hide our disabled away in institutions and attics.  

            2)  Children with special needs are not just pampered wussies who parents mollycoddled them too much.   Autism is a difficult processing disorder. ADHD kids want to be good. A melt down is NOT a temper tantrum. And we are talking about CHILDREN, why do people expect children to be better behaved than adults?  If you honestly think that a special needs child just needs more "discipline"  (by which you simply mean punishment- not actual discipline.  Punishment is when you smack your kid. Discipline is what I use when I don't smack you.)  then you, dear reader, are an asshole. 

           3)  Disabled children grow up to be adults with talents and skills and value all their own.  How dare you expect my daughter's education to be a glorified daycare?!  How dare you expect her to not have access to health care as good as anyone else's?!  How dare you not allow her to dream big, have ambitions, contribute to society, and make the world a hell of a lot better then this mess we have apparently created?!    

            I grew up with disabled siblings.  Children of my older sister's generation were usually shuttered away in horrible, overcrowded institutions where they were neglected at best.  My parents had to sue the state they lived in to assert my sister's constitutional right to an education.  When my parents wanted to adopt, they were told they would have to institutionalize my older siblings because it was too hard for my family or no adoptions. (My folks very rightly told them to buzz off.  Ended up with two adoptions anyway. ) They, along with so many others, fought daily for every inch of progress made for kid's like Feisty Pants to have a decent shot and a fair start.

            So, for my folks, who fought so hard.  For my sister who never was given the chances she should have had.  For my brother.  And most definitely for Feisty Pants.  We will not go quietly back into the dark ages of disabled rights.  We will not go quietly back into institutions and back bedrooms and quiet poverty. We will not go back.   And if I have to, I will gladly spontaneously combust and take all you d*cks with me. 

Really?!?

              Well, dear readers, I've said this many times before but now I feel the need to say it again LOUDER.  The Affordable Care Act is important and valuable. It improves and saves lives. Is it perfect? NO.  But it beats what we had before by a mile.  Perfect,  by the way, would be nationalized medical care.  Medicare for all would fit that bill nicely.   Do not hand me any nonsense about the government taking care of us.  That is EXACTLY what they are supposed to do. That is exactly what we pay them for. We all put in our dollar and the roads get paved, fires get put out, schools get built. The public good is government's only function.  Otherwise, what purpose does it serve?  We are a democracy, not some feudal system where all benefits trickle up to the nobility.

              But for those of you who may not understand what good Obamacare serves, let me explain.  First, everyone deserves health care.  It is a right, not a privilege.   If you think there are human beings out there who do NOT deserve health care, then your soul is crippled and you need professional help. Which would be covered under a good health care plan.   Second, eliminating pre-existing conditions is a life saver. The idea of them is frankly, offensive.    Life time caps are also offensive.  How dare any company put a monetary limit on human life?!?  (Stop being bloodsucking vampires feeding off human illness and pain. )

              Eliminating pre-existing conditions meant that my daughter, who is disabled due to a birth injury, could grow up and get a career, pay taxes, and do all those things that someone doomed to poverty could not.  Feisty Pants would not be stuck with medicaid forever because private insurance would never cover her.   She will need life time medical care to simply live, not thrive, not succeed, LIVE.  Eliminating life time caps means no one could pull the rug out from under her and take away the things her insurance pays for like durable medical equipment, expensive formulas, medications that keep her alive.   Repeal Obamacare and she is stuck under the poverty limit for life.  And I never, ever want to hear one more supposed decent human being then complain about people not picking themselves up by the bootstraps.  They cannot do so when you have stolen their boots and cut off their feet, you selfish jerks.

             It will also be much more expensive for society in the long run. People who cannot get a simple antibiotic end up in hospitals with major infections.   It's cheaper to pay about 100 bucks for a simple doctor visit and an antibiotic than a $4,000 er visit.  Or a $50,000 hospital stay. And the people who cannot afford to pay for doctors are usually the people who cannot afford a day from work, so have fun while they cough on your groceries, fast food, restaurant dishes, toilets, etc., because they are working while sick.  Oh, and cutting back on services for kids like mine mean she will need to be hospitalized more, so there goes everybody's taxes up more because her care is VERY expensive when we cannot keep on top of her continuing health care needs and private insurance will not cover her because you know, Obamacare was so terrible.

                Oh, and don't complain to me about the premiums under Obamacare. The government did not set those premiums.  Greedy private insurance companies did. Aetna raised their rates precisely because the federal government would not approve a monopolistic merger they wanted.  The rest of the companies did so because Aetna got away with it.  But private insurance companies just have your best interests at heart, so let's go back to that shall we?  I'm so sure the premiums will go down when no one is there to restrain them.

                  I really don't want to hear you complain about taxes and the insurance fine either.  Taxes are NOT theft. You get a million benefits for those taxes.  Paved roads. Firemen. The police.  The frigging US military.  A massive amount of medical research. All the fun science we got from NASA that was put to daily use. Snow plows.  Taxes paid for modern civilization. You wanna go back to living in a hovel without central heat and public sewers?  Have fun.  Personally, I like the internet and not having cholera.   Oh, and by the way, you are required by law to have insurance on your car.  And prove that it is safe to drive.  Or else  many places take away the right to drive it in public.  Or fine you. Some places even take the car.   And you know what? It might be inconvenient at times, but it makes the rest of us safer so there's no giant outcry of how dare the government make the roads safe. Suck it up and pay your damn bills, including health insurance.  Really don't think you should have to?  Maybe you ought to rethink that whole national healthcare thing then, it might actually be cheaper on top of being better for us all.

                   

          

Self Care for Cold Season

                 Well now, here in Feisty Pantslandia (The Democractic Republic of Feist? First Imperial Feistopia? Pantsgri-la? anywhoo, I'll stop now...)  we have been battling colds since school started, or time began, I don't remember which now. It seems like we just get over one bout of sneezing and aching and complaining and right away, here comes one of the first ones to have had it all snotty and wheezing and achy, again. Sigh. I blame all you touchy feely, happy, affectionate wierdos out there.  Honestly, I am going install a high tech airlock that sprays everyone with purell and lavender oil on my front door any day now.   May not work but everyone will least at smell great.  You're welcome.

                 But until I win the lottery or figure out to diy my own biosphere, I guess we will have to continue battling the season of colds and flu. (The flu, especially, is said to be bad here in NYS this season.) So I thought I would write down a few self care tips to help anyone else stuck in this snotty handkerchief of a January.  Anything to make us all a little more comfortable right now.

                 

1) Ginger, ginger, ginger.- Seriously.  Ginger tea with lemon and honey is really good for throat and sinuses.  It soothes and coats the throat and is also great for troubled tummies. (The reason why everyone drinks ginger ale when they're sick is for the ginger.) Candied ginger especially is proof that the Universe loves us as far as I am concerned.  It's warming, soothing, helps with coughs.  There is even some evidence that ginger will boost your immune system.

2) Homemade vapor rub- Vicks or Dr Unker's are fine but this is all natural  and you can adjust the scent to your liking.

You will need:

1/4 cup olive oil

1 to 2 TBS grated beeswax

5-10 drops eucalyptus essential oil

5-10 drops peppermint essential oil

5-10 drops tea tree oil

10 drops lavender essential oil (optional)

Melt the olive oil and beeswax in a glass jar (I stick things like this in a small glass jar and put the jar in hot water) Stir in essential oils. 

   extra tip- My mother and aunts swore by slathering this on your feet last thing at night, putting on thick socks and going to bed at the first sign of a cold.  Can't say it works for sure, but it's an old wives tale sworn to by a bunch of old wives.

3)Try putting a few drops of peppermint oil or eucalyptus oil in the tub.  You could even throw in a half cup or so of epsom salts  to make it even more soothing. (The magnesium is great for the muscles)  Soak, relax, let the steam open your kid's sinuses (or yours).

4) Don't forget the chicken soup!  Or bone broth.  Or veggie broth for the veg heads like Hippie Pants. Hot broth with a touch of protein and fat works wonders in healing and soothing. 

                  So there ya go.  Just rest and take it easy. I'm sure we will all better in no time. If you need me or Feisty Pants, just text us.  I'm not touching any of you germy buggers until I'm sure you don't have the plague.

To the other parents who have been there

               So I have totally been procrastinating everything and sulking about the universe since November.  It seems like the world is devolving into a Lord of the Flies bully fest where jerk offs are rewarded and everyone else is labeled as prey or foolish. But you know what? Enough. I'm done.  I cannot make the world dance to my drumbeat even if it is the coolest, most awesomest, peace, love, and granola drumbeat you'll ever get to hear. And all my pouting isn't gonna do a thing except bug those I care about and eventually cause me to get on my own nerves. Which I have. Right about this weekend.

               Feisty Pants had a crappy weekend. (Ten people went to my folks for Christmas.  Five now are battling a hideous cold  known as the plague that won't quit.) We spent Friday night at a walk in clinic and Saturday at an ER. She's fine now but it's soul wearying to spend days in a hospital setting when you are not working there and therefore are simply in an enforced waiting period; especially with Feisty Pants, who is a complex patient, and whose every hiccup makes doctors have three intense, whispered conversations with each other about what it means.

                So, now, enough.  I'm tired and crabby.  All my whining is getting on my own nerves. I'm putting my attitude into time out and it's not welcome back until it knows how to behave in public. Which brings me to my point. Action of some kind is what usually snaps me out of a funk.  I was reading this morning about an actress whose infant son had a skull fracture and this scared the hell out of said actress. It was hard when FP was born and we sat, terrified and gobsmacked, waiting for the next doctor/nurse/therapist/specialist/witchdoctor/priest to come around and spout an entire medical text of jargon and scary what ifs and what could bes at us, and we were expecting terrible news due to her birth injury. And I grew up with disabled siblings so I never had to have that heart broken "but it only happens to other people" moment.  I can only imagine what it's what like for a parent whose trauma literally comes out of nowhere. There must be something we can do to help a bit more for the parent first stumbling down this road.

                  Soooooo, I got up this morning and looked at my safety pin on my coat and had a thought.   I know there a million therapy groups and online sites and facebook groups.  But I was never one for too many group anythings. (Honestly I was always a Wednesday Addams in a world of normals...) Isn't there something we can all do, like a safety pin but different, to let the next parent just falling out of bed and stumbling down this road know we are least good for a few pieces of advice, a cup of coffee or at least a safe ear to spout at???  Something that's totally informal and simply says, "We've been where you are and it's cool to approach us."  What do you think? Any ideas?