Monkeys; Updated

So I sent out an update at the beginning of the week because against my will I have been plagued with some extra tests and referrals, and after a bit of a crazy week (and I’m kind of a zombie today), I have updates!

…and purple hair. Much purpler than last time. My hair is almost to my waist, so I used 2 boxes and there was purple dye everywhere!!

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Back to the updates…

PCM:
Right Upper Quadrant Ultrasound: Normal (HA!! take that Liver!)
Thyroid Ultrasound: Findings compatible w/history of Hashimoto’s Thyroiditis
All blood labs drawn and completed, Iron panel recheck in November
Cobalt & Chromium levels pending
yearly physical completed and okay, PAP results returned normal, PAP recommended in 5 years, August 2021, unless otherwise indicated.

Neuro:
EEG completed 8/29
Follow up 10/04 for EEG results and for migraine and TN pain following (f*k you tumor)

Pain Clinic:
referrals renewed for the rest of the year, new referral due on or around March 5, 2017
scripts current until follow up with PA on 10/04

ENT:
saw ENT surgeon 09/12
CT paranasal sinuses completed 9/14 (that was weird, face down. Did you know the whole CT machine can tilt 45 degrees??)
small mucosal retention cyst in left maxillary sinus, nasal septum deviated to the left
follow up 9/22
(did I say my left side has it out for me?!)

Also, stupid left baby toe is pretty colors and I’m fairly certain I fractured it, but meh….whatta ya gonna do?

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Finally, I ordered a myintent  necklace because last week during the Stand Up 2 Cancer telecast, they were participating and offering 10% off and all proceeds going to SU2C. Because Stand Up 2 Cancer. Retired-Chief and I have both lost our Dads to Cancer, my best friend beat stage 3 colon cancer 12 years ago, and I’m living with an inoperable brain tumor. So, it’s a cause close to my heart.

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I choose “I rise” because I try to rise above the pain and fear. And because I’m in love with this song….

 

 

Juggling Monkeys

I used to use that phrase “juggling monkeys” to literally mean my three monkeys (okay 2 of them were roughly my size and are now bigger than me), my house, the aminals, and life in general while Chief was off saving the world.

These days it means more like all the ish that comes with being stuck in this body (seriously, WHO do I speak to about a refund??), homeschooling the youngest monkey, 3 cats, and life in general while Retired-Chief is off building computers to save the world.

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If you ever wanted to know what I’m sitting in front of when I post this… Xunnie’s desktop

Most of the time, everything is fairly juggle-able. (Is that a word? it is now.)

But, throw in a brain tumor that likes to show up via choking incidents and memory impairment, a couple more specialists, some script changes, …oh! and the recent inability to not frickin drop absolutely everything and anything I touch.

So….broken down:

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PCM (Primary care doc):
Right Upper Quadrant Ultrasound (ordered due to wonky labs): ordered, completed, results received. Normal Abdominal Ultrasound  (although she is still threatening to send me to GI)
Thyroid Ultrasoundordered, appointment 9/13 @ 2 pm
Metabolic lab panel, Liver Function panel, Cobalt blood levels, Chromium blood levels: labs ordered and completed, except for Cobalt & Chromium results still pending
Yearly PAP results are also still pending (but if I pass my pap I may get to go a few extra years without one! Cross your fingers!)
Edit: Update….PAP results are back and normal! Hooray! ~ X

Neurologist:
Raised my dose of blood pressure/tremor/anti-seizure med
EEG: ordered, completed, results pending, next appt 10/04
(I’m also supposed to be keeping a pain/headache log)

ENT Surgeon:
new doc, saw her today
Reviewed the last 2 brain MRIs I have that show a retention cyst in my left maxillary sinus
Ordered a CT of my paranasal sinuses, appointment 9/14 @ 1pm
Follow up with her 9/22 @ 3 pm. She says if the cyst is pressing on the boney structures, we schedule surgery. But it’s endoscopic outpatient surgery. Ain’t no thang.

Pain doc:
I am very, VERY lucky that I have a pain clinic that listens to me and treats me. I put up with a certain amount of crap, but Amy (the PA I see every 6-8 weeks) is very kind and happy to work with the rest of my doctors. They keep my brain tumor scans and reports, and my migraine info on file, and order cervical MRIs every 1-2 years. Amy actually suggested my newest EEG from my neurologist.
Referral renewed for the rest of the year: check.
Scripts renewed until next month: check.

This is me fighting for fewer doctors and juggling tests and scripts. It’s a little crazy right now, but it’s been a rough year. (F*k you MRSA)

I also dyed my hair purple again, inspired by Kara.

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There’s purple dye everywhere!!!

AND dropped the damn jar of skin cream on my baby toe. And of course it’s the one with the screw in it. On my left foot. Because of course it is.
(random Xunnie fact: My left side and Tuesdays have it out for me)

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Also, can I just point out that dropping the jar on my foot right there takes talent!

Silence

2001 was the worst year of my life. For a lot of reasons that have nothing to do with the events of September 11th. I don’t know if it was a gigantic cosmic “kick me” sign or Hell I just got lucky, but my family simply sums up the year with “death, lightening, and taxes”.

But none of those stories relate to today’s post.

September 11, 2001, I woke up to the phone ringing. I had been out of the hospital for about 6 weeks and was still recovering in a lot of ways. My kids were at school 6 blocks away and my husband was out of the country. So having gotten the kids up and off to school, I laid back down to rest.

The phone was ringing and ringing as it woke me up. I reached over and answered it. An old friend was calling me. “Is your TV on? Have you seen the news?”

“What? No. Why?”
I get up and go turn on the television, bringing the phone with me into the next room. The picture flickers on just as the first tower falls.
WHAT the hell???!

After the first plane hit, in the confusion, we all thought it was a terrible accident. Then the second plane hit. And the world as we knew it, the world as I knew it, stopped.

The first thought through my head was: Oh my GOD P’s in Europe. He’s okay.
Immediately followed by: Okay, we live 20 miles from the base, out in the middle of nowhere, the kids’s school is in the subdivision and I have a grocery store a mile away. We are going to be okay.

My husband was Active Duty Navy Aircrew at the time. And the reason the first thing I thought of his location was because of the type of duty he had at the time meant that he typically spent more time in Washington DC than where we were stationed in Jacksonville, Florida. He was in Europe and had no idea what was happening.

I spent the rest of the day juggling phone calls and watching the next six hours unfold on the television. My family was over 5000 miles away in Hawaii. His family was in Washington state. His crew was met by somebody’s somebody that handed them a SatPhone and  informed the crew they were being fueled up and sent directly back to the States as soon as their wheels actually touched ground in Europe.

He called. “I’m okay. We’re okay. I’ll see you soon.”

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I have spent the last 15 years being so angry that we were lied to. I wasn’t in New York, or Washington, or Pennsylvania. I didn’t bury a loved one because of those events, but I have cried. And I have been angry.

So angry that I didn’t realize that I never really mourned the lost souls. I never grieved. Grief has 5 stages. I stayed pretty much at angry.

Until I read this: Ground Zero

Go read it. Take the 20 minutes or 45 or however long it takes you to get through it.

And then ask yourself the same questions I found myself pondering: Why in God’s name do we build a museum? Could you go through that museum? Would you? Are you still angry? Have you grieved? Can you close your eyes and see it all happen? Has it really been 15 years??

taps-prologue-and-taps

 

Insanity; Xun Edition

Things heard in my house:

Me: “If I go missing, check the river because I’ve thrown myself off the bridge.”
(I routinely threaten to hide under my bed or throw myself off the bridge when I am overstimulated/stressed.)
Kid: “Which one?”
(To be fair, I do live on a peninsula with 2 bridges on 2 different rivers within driving distance.)
Me: “The closest one. I’m lazy.”

I’m pretty sure that was on Tuesday. because suddenly I was juggling 2 more specialists, and several more tests and goawayleavemethehellalone!!

I keep telling my doctors to give me my scripts, and go away and leave me and my organs alone, thankyouverymuch. BUT my primary care doc (pcm, or pcp….whichever you prefer. Invariably I go with pcm.) decided my liver function panel was wonky so she decided I need to rule out Autoimmune Hepatitis (AIH) or Liver Cancer. Because one autoimmune (my thyroid) = another autoimmune. OR one cancer (my brain tumor) = another cancer. Oh fun. Let’s do this.

So she ordered an abdominal ultrasound, a thyroid ultrasound, cobalt and chromium levels drawn, and an ENT surgeon referral to get the cyst out of my left maxillary sinus. (Actually I asked for that. I’m assuming it might be nice to breathe.)

Metabolic panel….check
Liver function panel….check
Yearly pap and all that fun stuff….check
Abdominal ultrasound ordered and completed….check

Oh! Wait I have those results now!

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HA HA!! Wow….do you mean that it’s entirely possibly that when I was sick as hell for 3 months, it affected my innards and maybe now I’m working my way back? Because I was coughing up green $hit for almost 4 months and now I’m not?

Side note: my aorta and IVC are not unremarkable! I’m beauty-ful. #everyBODYisbeautiful
Also…they can’t see my left kidney because I have a big ol’ hunka hunka metal in the way.

Back to the list:
Cobalt/Chromium levels drawn and sent to Bethesda…check (this outta be fun)
ENT Surgeon referral acquired and appointment made with her on Monday….check
Thyroid ultrasound appointment made for Tuesday….check

And finally, neurologist appointment made for follow-up and EEG results, October 4.

So, other than trying to die by cracker yesterday (this dysphasia courtesy of where my tumor sits….I’m over it), it would appear that besides a hopefully quick and fairly easy endoscopic surgery to get the cyst out of my maxillary sinus, not much is going to change.

Works for me. Back to playing in my make-up.

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Stuff…and Things

Mostly because it’s been a rough August, and a rough year. For a lot of us…

For my favorite Dookie fighter!!

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And if you’re having a bad day, just remember…

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Believe in a little magic….

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…and find something that brings a smile to your face!

(And if you’re bored, my Tumblr has so cool stuff! I forget about it and then scroll back thru and find more treasures!)

EEG #2

EEG #2

In June of 2014 (2 years ago), I was diagnosed with  a left trigeminal meningioma and spent lots of time in scanners (CTs, MRIs, you name it…) before being sent up to Georgetown for a week of stereotactic radiosurgery (aka CyberKnife radiation). It’s like having radiation, but it’s sort of a surgery too. Mostly, it’s just like having 30 radiation sessions in a week.

I still have Irkle…

percivel

So named because he doesn’t do much except be irksome and irritating.

But he’s stable. Mostly.

Georgetown kicked me back to my local neurologist because Irkle is so close to my brain stem he’s inoperable. So there’s not much to do but keep an eye on him.

mask

And burn my mask. Which I did last August at the one year mark of surviving radiation.

So, two years of scans and meds and many, many doctors later, two of my doctors decided I need a repeat EEG. Not fun, but whatever, because any seizure activity I seem to have seems more absence seizure that flop-around-like-a-fish seizure. And Irkle’s not giving up much info.

So today was EEG day…

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Before
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Oh so many wires…

The worst part about it is washing all the crap out of my hair after. And the hyperventilating part, but today’s wasn’t so awful. And I had a really nice tech.

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Oh, hey, we have a new machine. And we added some more wires!

Okie dokie…..all wired for sound and picture. Time for the pretty lights and the heavy breathing.

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I *PROMISE* I’m not dead.

So, now we see if my brain is doing crazy brain stuff. Results tbd.

 

 

Guess What I’m Doing….

So I haven’t decided if my yard looks like a construction zone or a crime scene….

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I have “caution” tape allllll the way around my house. *But* I also have signs for Solar City and big trucks and cars all over my driveway, street, and yard.20160827_114934

Sooooo, I’m pretty safe. Pretty sure nobody’s going to think it’s a murder scene or anything.
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And we’re getting solar panels. Because my house faces south which makes it a good candidate for solar panels on the front and back of the peaks of my roof. And in Maryland there are lots of incentives for solar use. Who knew?

Good thing too, because the “co-op” that is our electric company keep raises the rates. Thieves.

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That blue thing over there….that’s my car. Hubs pulled it out of the garage in case I want to make a break for it. So, I have that going for me….which is good.

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Everything Is Relative

In my own little Wonderland, and depending on the day, I can be pretty far down the rabbit hole….

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Time in Underland is not the same as time up here…

I’m fond of noting that everything is relative. Not just the six degrees and all that, but think about what you know, and why you know that. Call it six degrees, call it karma, call it your personal narrative; but everything is relative. What is true for you may not be true for me.

That being said, I’m an only child with authority issues. That means I accept very little at face value and don’t understand the concept of “just do it because you’re supposed to/because you were told to”.

“Why?” is the one word you could use to describe me.

Which is why I felt called to contemplate another conspiracy theory. (We all have them, my personal favorites involve JFK’s and Marilyn Monroe’s deaths).

*But* if you heard of a “conspiracy theory” that involved almost 300 years of “phantom time”, missing time, rewritten history; what would you think?

The first clue….

Phantom Time Hypothesis

Phantom Time Hypothesis

Thinkstock

The theory: Roman Emperor Otto III misdated the Western calendar 297 years because he liked the idea of ruling in the year 1000 AD. Otto, the Pope, and others filled in this “phantom time” with some completely made-up history: the Early Middle Ages. If this is true, the current year is actually 1719.

Any proof? Surprisingly, yep. There are literally thousands of recognised forgeries of documents from the early Middle Ages that claimed to be written hundreds of years before they were, and describe events in detail, centuries before they happened. A huge majority of these were made by the Church. There is also hardly any literature, art, records, or cultural artefacts from Western Europe in this period, nor any real progress in agriculture or technology – hence the term “the Dark Ages”. Read a paper about it here.

(via Buzzfeed)

Hmmmm….okay. But, Xun…..Buzzfeed’s fun and all, but seriously?

True, but I remember when I worked for an insurance company I had to learn how to notate Julian and Gregorian dates for archiving claims. I didn’t think much of it at the time, but does it really matter if I refer to the Julian date? or the Gregorian date? Or what about the Chinese calendar? In that one, it’s five thousand something, right? Or the Jewish calendar? Six thousand something? Or the Mayan calendar? They ran outta room of their rock….we’re gone.

Other sources:

Medieval forgeries

Mystery Of The Controversial Phantom Time Hypothesis

Did the Early Middle Ages Really Exist?

Time is relative. Does it really matter if it’s 2016 or 1719?

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Would it change your existence if 297 years was MIA?

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Maybe the Mayans were right? In which case, we maybe just bought ourselves 222 years to get our shit together before the planet really does disappear into….well, wherever the Mayan calendar assumed we’d go when time ran out.

 

WTF Does That Mean?!

Okay, I totally hit a wall yesterday.

A little history….hubs is a retired Navy Chief, but the running joke is that I’m the one with a mouth like a sailor. Until last year, I was the one with the tattoos (he has one now) and piercings. And the mouth. But I’m a college educated lady, thankyouveryfuckingmuch. And typically I’m pretty good about my language. Until I get pissed off-fa-fah! (Did that come across as harsh? Because I was trying to inject a little bit of humor, but I tend to come across as a little harsher than I mean sometimes.)

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It’s been an interesting week. Hubs returned from 13000 miles away, kid and I finished one set of classes and signed up for ASL 2 at the local community college (I’m really enjoying learning American Sign Language!), and inspired by Kara‘s recent turn to fuschia hair, I dyed mine London Lilac!

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Because purple hair. And Suicide Squad. =D

So, not a bad week, yes?

Until the end of the week started piling up. And now I hate all of my doctors.

I sent an email to my PCM a couple of weeks ago because it was time for my yearly thyroid counts and refilling of the synthroid, because autoimmune thyroid. Only my endocrinologist has since retired and canceled my appointment. So I sent off a message: I need my TSH & T4 tests and my script refilled, do I need to find a new endocrinologist or can you do that because I’ve been stable for over a year?

I get a message back: You need yearly labs and to schedule a physical here. Oooooookie. Whatever. Baby PCM doc graduated med school in 2011 and she’s way, WAY out of her depth with my case, but I’ll play along. Need my synthroid. We can juggle this.

So I make the appointment and go get my labs drawn and we started playing the authorizing my dose for the “tide over” script I need until my appointment. Irritating, but what. Ever.

Meanwhile, I’m also refilling a couple of scripts from my pain doc because they don’t always line up to fill all of them on the same day, and my appointment isn’t until Tuesday with her. Got one. Requested another. No message back. Ugh. Send another message. Pharmacy calls me: we called, they said patient need to get a hold of them. What? Why? At 3:30 on Friday afternoon. Needless to say, no meds for Xunnie til next week.

In the middle of all of the fuckery, I also get another email from my PCM’s nurse. “Your liver function tests came back slightly abnormal, we need a repeat fasting labs as soon as possible.”

What the fuck does that mean??!!

I email him back: Can you send me my labs? and I’ll be in next week. Response? They’re online, you can look them up.

Fucker.

Fine. I spent an HOUR setting up my TOL profile to get into my lab results. Guess what? Say it with me…..not available yet.

OHMYFUCKINGGAWD

IHATEYOUGUYSWHYDOIHAVETODEALWITHTHISSHITLEAVEMETHEHELLALONE

(I kinda snapped. That was me hitting the wall.)

So, I:

  1. still have to get a hold of my pain doc and find out why they won’t refill one of my migraine prevention meds.
  2. Have to find out what labs came back with what results and decide if I’m going to fight with them about it. (This is, after all, the same doc that decided I needed a colonoscopy and a fuckload of iron because I HAD MRSA & MY LEVELS WERE OFF BECAUSE I LOST 15 POUNDS. So, yeah, none of that happened.)
  3. contemplate repeating the labs at some point next week. But they’re 12+ hr fasting labs.
  4. pain doc appointment on Tuesday and monthly refills

 

I also have: kid’s photography class next week M-F 1-4 pm, the stupid physical they’re bullying me into on the 25th, my oldest’s birthday on the 25th, new asl classes starting on the 16th, neuro appointment on the 26th so I can ask her about surgery to remove the cyst in my left maxillary sinus so I can breathe and because I’d really like to prevent me getting MRSA again. AND at some point I need to get my shit together and get the kid’s curriculum set up for the coming school year.

All those ^ I can do. Because that’s life, and there’s lots of good stuff. But I kinda freaked out a little and got overwhelmed by juggling my pcm’s demands, whateverthefuck “slightly abnormal liver function lab results” means, trying to fill my scripts and jump through all their damn hoops and follow their damn rules, trying to get a hold of my pain docs, and juggling doctors, scripts and tests.

I don’t want to do this anymore. Life with chronic illness blows.

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New? Not so much….

So……this popped up in my Facebook feed and I decided to go check it out because chronic pain is about the most unfun thing you can think of, and in the middle of the full on assault of patients rights to be treated compassionately for pain, we in America are always struggling for pain relief. And the fight for doctors, nurses, PT nazis ( if you’ve through physical therapy, you get that), nurses, hospitals, the frickin FDA, and now politicians to stay the hell out of my pain management is never ending.

That being said…post cancer treatment pain management: second verse, same as the first.

http://upi.com/6374991