Tag Archives: insanity

Quiet in a Very Noisy Time

I was sorta, half-way, mostly in my head, working on an end-of-the-year review but the insanity of the last couple of weeks (both in the world and just in my little corner of it) has pushed me into my stoic, quiet, updateless place.

2018 was the first year since I have been diagnosed with an inoperable brain tumor that I was stable enough that I actually did not spend any time in giant, noisy medical machines. No MRSA, no trips down the stairs, no major choking incidents. I’m not convinced I’m seizure free, and I forget things like it’s my job, but I am stable enough that I was able to convince my neuro to let me ask pain management about shots in my neck again.

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2019 starts with me mostly stable brain-wise, in the middle of a couple of trips to the dentist, somewhat overwhelmed by life right now, and contemplating going to the Women’s March in DC on the 19th. So I am doing what I do and retreating into my head and my writing. I present my latest efforts from my journals…

The Night After Christmas

‘Twas the night after Christmas
and all through the house
not a critter was stirring
Not even Daisy with a new mouse.

The stockings were rehung
by the fireplace with care
Empty now of the treats and goodies
St Nick had shared.

The kids were all snuggled in
tight in their beds
with visions of such a wonderful day
bouncing through their heads.

And Dad in his pajama pants
and I wearing a messing bun like a cap
were heading upstairs
dreaming of a nice, long Winter’s nap.

When all of a sudden I heard
a bang! and such clatter
I tumbled out of bed
to go see what was the matter.

I hurried down the stairs
as I followed the noise
When what to my surprised eyes did I find
but a battle of toys!

Wow Daisy! Oh Phoebe!
And Honey-Girl too?!
There’s boxes and bows everywhere.
What did you do?!

As I stood and surveyed
the mess in my living room
I took a deep breath and wondered
“should I go get the broom?”

Just then a wondrous sight
caught the corner of my eye
I looked across the room, through the back window
and gazed at the Northeast night sky.

The snow had just started
to float down from the clouds
Clean, fresh, white sparkling snowflakes were floating down
coating our little town without a sound.

Soundlessly I turned
and gazed upon the messy room
Among those boxes and bows
I saw the joy that disappears all too soon.

Our family had been gifted
with such a wonderful day
and so our kitties had taken
their chance to play!

All those boxes and bows
and scattered tissue paper
would be remnants of cherished memories
to call upon later.

Seeing my furry little predators
attack all the boxes and bows
just added to my joyous memories
as they peeked out from the piles
with their tiny nose!

With a flick of a tail
as they dashed out of sight
I chuckled to myself and whispered
“Merry Christmas, girls! I love you. Good night!”

~ Xun, 2019

I hope you had joy in this last holiday season and I send hope and light and love for health and happiness in the New Year!

❤ ~ X

Whatever by Godsmack

I’m just having a minute so I figured maybe I should write it out. My blog has always been a description of my life, and it’s not anonymous. That makes some things hard to describe or vent about because everything in my online life is connected to my life. Online I am Xun, but enough people in my real life know my online life so there isn’t the break some people might find in an anonymous blog.

Most of the blogs I follow are connected to the people I know or have come to know. I follow just a couple of blogs that are completely anonymous. The benefits are that when you’re blogging about an illness, or a big life change, people can put an idea (like living with the challenges of an inoperable brain tumor) to a person (yours truly). The good is that people can connect and realize they aren’t alone in the world as they struggle with moving, challenges, frustrations, or hospitalizations. The tough part is that when you’re not anonymous it’s hard to just vomit your frustrations into your keyboard and hit “publish”.

I’m just frustrated today because I got hit with a lot of emotion and negative energy for something I don’t feel I deserved to be dumped into my lap. Since my blog isn’t anonymous, I can’t really just throw all the details out there. And truthfully, that’s not really my style. I’m stoic to a fault way too often.

But I can say I understand why I’m as stoic as I am. Sometimes it takes 30 years to put all the pieces together.

And, as is my custom, I spent the day lost in music and decided to jump online and kill some zombies for an hour or two. What kid of music did I throw myself into today? Glad you asked? 😉

 

Music makes everything better!

I hope your Christmas (or Boxing Day, or just Tuesday) was awesome.

Happy Holidays everybody! (and I’m currently working on an end-of-the-year/ 2019 aspirations (I don’t do resolutions) post!)

I Have A LOT of Holly Jolly

It seems like I get pretty quiet when I mostly stable and this has been a really busy year in my household. And, inspired by all the Christmas music I have been listening to, I thought I’d sent out an update. I am much better at posting more often on the Facebook page, and if you’re interested in more of Xun’s life, I keep an active Instagram.

  1. I may or may not be moving the blog to a new site unless WP gets their ish together before August. Long story, capitalist ish, unnecessary pixels.
  2. Healthwise: I am mostly stable. Labs were good this year, neuro felt I was stable enough to skip my yearly MRI this last summer, and aside from dropping things like I get paid to do it and having days when the only thing I remember is how to get home, I’m doing pretty good. I even managed to get my neurologist to sign off on me asking my pain specialists if they can finally do some shots in C6 after 3 years. (Post tumor diagnonsense, Georgetown didn’t want them messing near the epidural space.)
  3. My son came home after 6 years so I have all 3 of my kids in the state again and between them, they keep me busy. (Although my youngest gets the honor of keeping me the most busy and angling for me to be one of the “alpha theatre moms” (her words, not mine) by next September…..ish.)

My son just got a job at a new Starbucks opening near us, my oldest daughter will be graduating from college in May as a Radiographer!!, and youngest keeps me busy because she’s a sophomore in chorus AND theatre and we just started spacers and appliances to get braces on in about 3 months. And she just got her permit.
(send vodka)

So…..Christmas is just 8 days away….

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…and my youngest has embraced this Holiday season to be HOLLY and JOLLY, not stressy and depressy. Good advice kid. For the first time in my life I have THREE (yes, 3!) Christmas trees in my house. We dug the first one out…

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…but that wasn’t the new one we got last year. (I told you I forget things. And yes, I have fake trees. I have cats.  😉)

So we moved it to the spot by the back door, because why not?! And got the new one out of the basement and put that one up in the living room.

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THEN the kid really wanted a tiny Christmas tree in her room because she’s 16 and usually she has Halloween decor in her room, and Maaaaoooooommmmm-I-really-need-it-pleeeeeaaassseee!!

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Side note: We have a rule in this house not to put up any Christmas decorations before December 2nd because we have three birthdays and Thanksgiving just before the holiday season hits. I was born 2 days before Thanksgiving and my husband was born on December 3rd, so we know what it’s like to get lost in the Christmas Crap (Xun info: that’s what I routinely refer to Holiday decorations as 😉 ) and my youngest’s birthday is December 1st, so anything Christmas goes up after her birthday.

This year we had tech week, the weekend of the Fall play, 2 birthdays, the Christmas Chorus Concert, the kid’s party, The Army/Navy game, and rounded it out with the Winter Cabaret fundraiser.

This year she turned 16 so it was a big deal! She had friends over and they listened to music, played games, watched How the Grinch Stole Christmas, and had all kinds of her favorite foods, followed by an ice cream sundae bar.

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Tech week is the last week before a show, dress rehearsals, last minute pushes and updates so the parents provide dinners. The three days of the Fall Play always seems to land on the same weekend as the youngest’s birthday, so we pushed her party to the following weekend.

In the middle of it all was my husband’s birthday, followed by the chorus concert ,then the kid’s party, then by the Army/Navy game (yes, that’s important!….. even if the offense didn’t bother to show up this year), then the Winter Cabaret.

All caught up? I’m relatively sure I have failed in clarifying or explaining something, and I’m even more sure I’ve forgotten something, but here we go.

So what kinds of resolutions do you have for the new year?

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I’m less about “resolutions” and more for aspirations or focus points. But I am seriously considering showing up to the DC Women’s March in January in my T-Rex costume!

Happy Holidays everybody!

 

 

 

11 Years!

Today I celebrate the fact that I had major surgery 11 years ago today and gained a shiny new all-metal hip and the ability to walk again. The story with my ortho is one of my favorite stories to tell…

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This is my left hip one month before surgery. I had basically no hip socket and what we didn’t know then was that my soft tissue had been holding my femur in place….mostly. So when I tore the cartilage in my left hip in August of 2007, I ran out of time.

The beginning of my hip dysplasia actually doesn’t begin until I was almost 19 and just had my first child. I went to my doctor complaining that my hip hurt all the time and American Army medicine and the early 90’s meant that the geniuses in charge of my care did a “scanogram” (swear to God that’s what they told me) and determined that my left leg was 1 1\2 cm shorter than my right leg. Or my left knee was 1 1/2 cm higher than my right knee? They actually told me my left femur was shorter. Ya follow me? Yeah…anyway….

Skip to 2003 and I was still dealing with hip pain and now some spine issues and got a thorough check up after I had my youngest child. This time it was a Navy doctor in Florida that did an x-ray and then an MRI on my hip and told me I have hip dysplasia. Eventually I would need a total hip replacement and there wasn’t really much else they could do. At that point in my life (with a 6 month old baby, breast feeding, and at my heaviest weight), I got told to “lose as much weight as you can” by an incredibly competent and compassionate ortho doc. (sarcasm? you bet. I cried all the way home.)

I lost 50 pounds over the next 15 months and have pretty much kept most of it off since 2004. I gain 10 pounds here or lose it there and I am currently just 8 pounds heavier than my thinnest weight in 2007. I went through physical therapy twice and when I tore the cartilage in my hip I ran out of time. My doctors wanted to get me to 40 (never happened. I’m not letting go of my 30s without kicking and screaming, but that’s another blog). I made it to my 34th birthday. I also managed to wait long enough to have a new all metal  hip resurfacing instead of the traditional hip replacements that up to that point lasted 10-15 years. The Birmingham Hip was FDA approved in August 2006, my surgery was in November 2007. I got incredibly lucky and happened to live in Michigan at the time where the #2 hip replacement specialist is.

My doctor had trained in Birmingham England where the surgery and hardware was created. I had seen 3 different ortho docs that year and was referred to my surgeon because I was a good candidate for the Birmingham and considered too young for a traditional hip replacement.

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Just before my surgery.

My surgery went well and other than needing 2 blood transfusions I recovered well and spent the winter of 2007/2008 learning how to walk again. I only spent one week needing a walker. I was determined to not need a frickin walker so 7 days post-op I was able to walk with a cane. I mean, if you took my cane away from me I couldn’t go anywhere, but I walked with a cane just a week after surgery.

 

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Fun fact: if you look closely, you can see the 22 staples I had.

My ortho surgeon made a point to come to the hospital the day after my surgery (this is why this is a good story) to tell me that he had done about 300 of these surgeries so far and my surgery was the only time he opened up my capsule surrounding my hip joint and my hip dislocated by itself! The soft tissue was literally the only thing keeping my hip in place up to that point. I should make a note that I actually walked into the OR that day.

By the end of February 2008 I could walk again without my cane and because I had such a kick ass physical therapist (pt nazi) I was in the best shape of my life.

11 years later I am still able to walk. The rule is, however, that you can get far or you can get fast. Either I can walk further or I can get somewhere quickly. You don’t get both. I have a cyst on my hip joint but it hasn’t progressed to me needing another surgery. And even though I tend to fall down the stairs like it’s my job, I haven’t managed to damage my new hip (knock on wood!).

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So, here’s a martini today to kick ass technology!!

I Believe We Survive…

I re-watch Grey’s Anatomy on Netflix. Over and over. It’s like comfort food for my soul and every time I watch another run through of all (now) 14 seasons, I find something else to hold onto, something else to relate to…..or occasionally, a lot like this week, something to connect to.

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It’s been a tough week. Hell, I always feel like I could pick a point in time and say “it’s been a bit of a rough ____.” (And on the other side of the coin, I could simply pick a point in time and just be grateful…I know.)

The story of this week in particular starts last weekend. We chose last Saturday to make the second of our annual pilgrimages to the 16th century… AKA we try to go to our state’s Renn Fest at least twice during the season. A handful of times through the years we’ve managed to go more than once or twice, but two trips is our goal. There are nine weekends in the “Faire Season”, and we always go on opening weekend because it typically falls on or very close to my oldest daughter’s birthday, so somehow in the last dozen years or so we have created a family tradition of going to opening weekend at RennFest as part of K’s birthday.  Our second trip is usually near the first weekend in October.

So we decided to go last weekend, and even though I love going, I also know I *will* physically pay for it in the following days. It’s a lot…a lot of people, and socializing, and walking, and being dressed up in full garb (dressing clue: boots then corset!!). It’s just a lot, so at the very least I am going to be extremely tired and sore (I once bruised my ribs from my corset). I have, in previous years, ended up in the ER at 2 am from a migraine, and the accompanying dehydration and exhaustion. I made the mistake of going too soon after radiation treatment and again ended up in the ER because my potassium levels were stupid low.

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Anyway, the point I’m getting to is that we decided to go last Saturday, so Sunday I was (predictably) very tired and sore, but certainly in much better shape than previous years.
Until…
Until I woke up on Wednesday knowing the coming storm of a menstrual migraine was on its way. I have …typically 2-4 days… a month that a migraine can take me down, or if I can’t fight it back hard enough and it gets too far out in front of me, it’s off to the ER. But I haven’t had to resort to an ER visit in well over a year.

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I spent Wednesday fighting, pushing meds and fluids. Lots of meds. Beating down the pain, refusing the nausea. I spent the afternoon laying on the couch with my favorite blanket, and finally ended up taking a higher dose of my pain meds and migraine meds and wandered up to bed early. Pulled the covers over my head and just tried to sleep so I could get away from the pain and nausea.
I woke up Thursday feeling a little better. I still wasn’t up to functional, but I was upright, eating, back on a mostly regular schedule of my meds, back off Imitrex, and doing 75%ish in life.

Except.
Except as I was settling into bed Thursday night, my *dh finally realizes I have been dealing with a lot for the prior 48 hours. After 2 days of me fighting from my soul to keep me out of the hospital, he decides to actually LOOK AT me and saw the cost of 2 days. I was really pale, my random black eye on my left eye swung in for a visit. Basically I look like I have been fighting….something.

 

I just looked at him…..

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2 days. Two DAYS. 48+hours TWO FLUFFING DAYS……

I feel like a ghost in my house. I have so much more to say…..so much….

but I’m disappearing…..

 

*dh= “darling” husband. Read it in whatever tone you feel would fit described sitch.

 

I’m Still Here

Holy timelines!! Has it really been a month since I last posted?! I knew I haven’t been writing much, but I didn’t realize it had been close to 5 weeks. Sorry, I’m alive. If you follow my Instagram or my blog’s Facebook page, you know I’m still posting. I just haven’t been writing lately. Anything really. I’m barely even journaling much right now…

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Since my last post, I’ve made one of our annual pilgrimages to our state’s RennFest. Opening weekend usually falls on or about my oldest daughter’s birthday and my family is a bunch of nerds so we go every year for her birthday.

Yes, that’s me in full garb. It’s taken me 5 or 6 years (and I have a couple of outfits) but yep, we show up in head to toe 16th century clothing. We usually go at least twice. Once for opening weekend (for K’s birthday) and once in October, the first weekend if we can swing it, for our anniversary because we got married October 2nd.

My youngest child has started her sophomore year in high school. And my son came home after 3+ years. And my husband is currently working on possibly changing jobs if everything lines up well. It’s been a busy month!

I also saw my neurologist and pain docs. Neurologically I’m stable and she pushed my annual check-the-brain-tumor MRI in July, but I’ll probably have a scan in November or December because I’m mostly stable (and I haven’t choked in quite a while, knock-on-wood, #dysphasiaisabitch ) but if I get overwhelmed my ability to remember anything or put a sentence together goes out the window.

I saw my pain docs and talked to them about the pain in my right hand (inspired by Wendy’s info) and they agree it’s probably De Quervain’s tenosynovitis. She chose to treat it first with a brace and Flector patches (diclofenac, an NSAID). I am really, really dominantly right handed so I sleep with the brace on. But when I slept with the patches on my right wrist, I woke up feeling like I was having a hard time breathing. Turns out there are associated cardiac risks with Flector (and I’m allergic to aspirin) so that was axed. I tried Lidocaine patches too, but they actually seemed to make it worse. Fortunately the brace seems to be helping and my pain doc has decided to wait on injections or referrals. It feels like a slow process to treat something they can actually fix, but one thing at a time, right?

I also talked to my pain clinic about the possibility of medicinal cannabis or even just CBD oil. Because of the meds I’m already on (and even though my state is finally getting on board with cannabis options) I would only be “allowed” topical CBD oil with prior notice. Anything else would fall under a “transference of care” and I would not be allowed to continue my current meds and be transferred to a doctor in this state that issues licenses for cannabis. So….yes, we’re making progress. No, it’s not easy. No, it’s not really a good option for me right now. I wish they’d allow me more time to work with stepping down off some meds and onto others, but I didn’t get the impression that was an option yet.

Tomorrow is one of the annual Navy events we try to go to, so I get to get all dolled up and go to a (semi)formal event tomorrow night. Next week is my 19th wedding anniversary. My youngest is up to her eyeballs in chorus and theatre (which means I’m sort of up to my eyeballs in stuff, but the school musical isn’t until Spring so I’m not quite up to tech week insanity. (If you know what that means, you get it.)

So, yes I’m still here. Juggling monkeys and handling stuff. Gentle hugs and hope you guys are good!
~ Xun

 

 

What We Don’t Say….

I was a Psych major in college. Have I told you that before? Doesn’t matter…anyway, I actually switched majors from Pharmacology to Psych because I wanted to understand the human mind. All I learned is I’d make a terrible counselor. And birth order.

My point is I chose to study psychology because I knew what it felt like to be so depressed you just wanted to die. And I understood what it felt like to have a full blown panic attack in the ER. As in an ABG (arterial blood gas) being drawn mid panic attack and showing that my O2 and CO2 levels were reversed.

I went through some serious depression and (now I know it was) PTSD after a major medical crisis in 2001. I lost a child and almost died from sepsis. The I went home and slept with the lights on for 6 months and had nightmares for close to 2 years.

But none of this is talked about much. I don’t say I still have nightmares. I don’t talk about how close to suicidal I am if they suddenly cut off my meds. I don’t talk about loneliness or abandonment issues. I don’t say anything about the reason I have so many tattoos on my forearms.

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Everyone I know feels a little broken sometimes. How many people do you know that feel self-doubt? Or fear or not being good enough? Have you ever cried yourself to sleep? Is anyone else telling you it would be okay if you did?

One of my favorite people shows it better than I can….check out Swoop. ❤

There are a lot of things we don’t say. But you’re not alone. And it’s okay if you’re not okay right now.

Am I Being Punished for Being Sick?

I realize my last post (definitely a minute ago) was pretty dark and unhappy, but indulge me for a minute? It’s been a week. I just need to vent.

I got voluntold I needed to schedule an appointment with my PCM at the beginning of the month because the doc I have been seeing for the last few years is rotating out and to save me the frustration of waiting for the new doc to check in and get up to speed and then catching her/him up on my particular case, it’d be easier just to get my yearly check out of the way.

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So I got my labs and got the check up done. Labs were good, but doc was covering bases and wanted to make sure my brain tumor wasn’t getting any ideas about sending friends and relatives into any other body parts, so she gave me an order for a mammogram. I got that scheduled and it was done yesterday. (in other grumblings, I’m pretty sure she should have been kinder or bought me a drink….but anyway.)

In the midst of directing traffic, my pain specialists needed to reschedule my every-8-weeks check to be compliant. Okie-dokie. Reschedule me. Ain’t no thing. No, I don’t want to see the other PA, I’ll wait for the one I usually see. Yes, I know that’s an extra week. I’m used to you sending my scripts between appointments.  Same doc, same pharmacy, yes I know the fluffing rules.

But….

Scripts were due today. They called me yesterday to let me know they sent my scripts in, pick them up today. (yes. A lot of rules. I follow them. I’m over it but I still do it.)

Yes, my scripts were sent in, but they neglected to let me know they were only sending enough meds to line up with my appointment on the 27th instead of just filling the usual fluffing scripts and seeing me in 10 days.

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Yes, my scripts were sent. Yes I’m happy they’re not making me wait and I’m not without pain meds. But I feel like I’m being punished for being sick.

The American approach to chronic illness/chronic pain is growing more and more frustrating. I jump through a lot of hoops and follow a lot of rules because I haven’t felt like I have a lot of options. I have an artificial hip from hip replacement surgery at 34 because I have Congenital Hip Dysplasia that was missed until well into my late 20’s. As a result, my spine is seriously pissed off most of the time. Then, four years ago, I was diagnosed with an inoperable brain tumor. Related? Possibly, but it doesn’t really matter now. I just treat and survive the symptoms.

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I didn’t ask to be sick. I’m stable but it has taken years of going through a lot of trials and failing SSRIs, nerve pain meds, OTCs, and a bunch of other difficult options. I’ve been through anestesia 13 times in one year and I’ve lost count of how many needles they have stuck in my spine. It’s been fun.

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So….hopefully understandably I am especially frustrated today. I feel like I’m being punished every time my doctors put up another roadblock or hurdle to jump through. I’m trying, and until more recently I haven’t had a lot of options in my state. Suffer or dance, monkey.

I actually now have another option, but I have to talk to my pain specialists and get them on board or I end up failing tests they require. Here’s hoping.

*sigh* I’m off to eat ice cream and watch something that hopefully will replace frustration and hostility with just a hair more patience.

/sigh

I’ve had a shit day. I realized I have been pretty quiet as far as blogging goes lately and that pretty much because I am stable, and other than the normal day to day, there’s not very much in my life that’s worth writing down and sharing.

I mean, because Wendy ( Picnic With Ants) shared some of her story about the pain in her wrist and thumb I was able to do some reading and figure out my symptoms matched hers, but not necessarily the intensity so I have been waiting to see if it resolves on it’s own. I have an appointment with PCM DR Traffic-Director tomorrow and it’s still there just enough to be a bother, so I think I will bring it up with her tomorrow.

I also checked my labs so I knew what was going on before I see her, and found that my numbers are actually pretty good! The only discrepancy I see might mean my synthroid dose just get bumped up a tiny bit, but that doesn’t actually surprise me since my thyroid disorder is autoimmune.

But none of that is related to my shit day…well, mostly. Appointment with Dr Traffic-Director was scheduled for tomorrow because 1) It’s time for my yearly physical 2) the doctor I have been seeing is active duty and getting orders to rotate out next month (if you’ve ever been in the military clinic setting for your primary care, you’ll get that) and (3) because I have been informed that the clinic is instituting a new “program” for chronic pain patients.

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As part of their new Pain Process Protocol Program (seriously how many fucking hours did you schmucks spend around a table in a boardroom to come up with that one?!?!) I have been “issued” a prescription for Narcan, I get a new case worker (oh goody.), and I have to check in with my primary care doc every 90 days.
1. Yeah….that prescription ain’t gonna be picked up.
2.My “primary care” is a joke, they rotate out every 3 years. We retired here. I’ve been with my  same pain specialist for over 6 years and I already follow all their rules and jump through their hoops (new contract at the beginning of the year, random urine screenings, seeing them every 8 weeks, fill all my scripts at the same pharmacy, I am only given 30 days of meds at a time, so my meds have to be refilled every 29 days….
I am stable, compliant, and my doses haven’t been changed in several years.

So fuck you guys and your Narcan, and your 90 days, and your case worker.

You’re about 6 years too late. I have been with the same pain specialists for over SIX years. And allll those things we get told to do before or instead of pain meds; I DID THEM.
Every formula of the SSRIs, SSNRIs, and SNRIs out there; acupressure, acupuncture; Reiki, Biofeedback, physical therapy, “gentle exercise”, occupational therapy, yoga, talking to at least 2 shrinks, trigger point injections; massage therapy; Lyrica, Neurontin, ….you name it, I tried it. I had to trial and fail every other option before I got any narcotic pain meds. It was not easy. It was probably a 5 year process. I also even underwent light anesthesia (propofol) 13 times in one year for spinal injections and a rhizotomy.

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NOW, six years later, when I am stable and compliant, and my only “risk factor” is that I take narcotic pain meds; you fools want to stick your nose in. My primary care is just a traffic director….issuing referrals. My case is difficult and complex, and the people that I see the most (pain doc & neurologist) KNOW me. They know me and my case.

I did not accept the “script” for Narcan, I didn’t answer my phone when my “case Manager” called. Go away. And take you stupid PPP Program with you.

4 Years

Four years ago, within 30 days…
We signed the contract to have my house built, my dog died, and I was diagnosed with what ended up being an inoperable brain tumor.

I’m now sitting in the house I designed and we have just painted the downstairs bathroom, put new curtains up in the office, and gotten new (to us) living room furniture! Three years into living in said house, we’ve been slowly working our way through painting rooms, and fixing up stuff that we’ve shlepped around from duty station to duty station. This summer we’re planning on painting my daughter’s room and the spare room, and painting her desk as we move some of the furniture around upstairs.

My puppers is on my mantle in her pretty little oak urn with her collar around it, and someday we’ll plant her ashes into a tree in the yard.

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And my tumor is still there, still inoperable, and still the same size and shape. It’s still a journey, but I am mostly stable.


I wrote this a couple of weeks ago, then set it aside for the Great-FreakTHEEFFOUTTTTT of 2018 when my pharmacy miscounted my long acting pain meds and I freaked the FUCK out because I had visions of the pharmacy to tell me to figure it out, my pain docs to tell me to keep better track of my scripts, and no pain meds = no Xun. It wasn’t a  great 12 hours and I realized how close I am to the line of not deciding to live in chronic pain.

It was solved quickly and relatively easily….moving on….

I’ve been thinking about how much I blog. It’s not as often right now. I started a blog back in 2009ish? It’s gone through some changes and at least one major move from one platform to another. The last four years have focused more on the tumor near my brain stem. It’s ….. stable? Mostly. The tumor is the same size and shape as far as we know. But the effects of said tumor have progressed. I have dysphasia, confirmed via swallow study. (kind of a weird thing to go through) Aphasia when I completely lose words in the middle of sentences. Those may be connected to absence seizures. But I find I forget names of things, people, places….it’s easily the most frustrating thing about my current existence. (I spend a lot of time muttering to myself “I’m a frickin *writer*, I NEED words!!”)

sanity

I’m rambling but basically it’s just thoughts about where I’m at right now. I’m medically stable. No more turning my life upside down and moving every year. No more waiting for orders or duty stations. I don’t fight with…well, anybody anymore. There’s just not the fight in me.

Right now, my life is my kid’s school and theatre group keeping me busy, and now that she’s on summer break, I’m just juggling house, kitties, her activities, and my mother coming for 10 days. My doctor appointments pick back up next month. I had a nerve study done of my left arm because I was having pain in my ulnar nerve and numb spots on the back on my hand, my index finger, and my thumb. In the ENS they tested motor nerves and there’s something going on in my forearm, so I asked them to send the report to my neurologist and I see her again July 30th.

Right now, my life is fairly stable. June 23rd was the 6th anniversary of my Dad’s passing.

world_in_a_grain_of_sand_by_biothief-d481ye7

My kid keeps me busy. I probably don’t blog more often because I don’t think I’m very exciting right now.

But I did have a really vivid dream the other night that I’m thinking about writing about. It made me miss someone…..but it would be a great movie…