Tuesday, March 14, 2017

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.

Thursday, March 9, 2017

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.

           






Wednesday, February 22, 2017

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.


Wednesday, February 8, 2017

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. 

Monday, January 23, 2017

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.
                   

          

Monday, January 9, 2017

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.

Monday, January 2, 2017

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?