Ch-Ch-Ch-changes…..

Hey!
(Whaaaattt?! A post from Xun???)

I know I have not posted this year. I’ve been thinking about it and journaling and there are a couple of reasons, but mostly it’s just because this year has had so many changes.

One pain specialist clinic closed, so I moved to another and found out my previous providers would be joining the new practice so I’ve been in the middle of medication changes. How’s it going? Well, I’ve lost almost 10 pounds…
My new MRI this year showed that my brain tumor has grown. Not a lot, but it has decided to wake back up and do something. To borrow my neurologist’s words “it’s small, but it went from 3 by 5 to 4 by 6.” So what do we do? I don’t know. I had radiation and I’m not sure I’d even qualify for the treatment again. And not entirely sure I’d want to go through that again. Surgery is not an option, so we wait and we watch.

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Anyway, I’m starting to get off track. So what does that mean for this blog and this post? My plan is set to expire shortly and between my frustration with WP and my lack of posting lately, I think I’m going to go ahead and take this one down. My blog has been set to post to my tumblr whenever I posted, so there will be a version of my blog maintained there and I tend to be more active on my facebook page for this site, so please come check that out and like and follow me there! I usually post a few days a week and I always try to do a “Music Monday” post. Music is pain relief. 😉

Gentle hugs, take care, love you guys and hope to see you soon!!

❤ ~ Xun

Life as a Case Study

My last post was about the insanity in my life and the new request for a c-spine MRI for Facet Injections. Update time.

Even though Tricare tried to derail the planned MRI by not letting me know ahead of time I needed an authorization because last year we switched from one major medical billing company to another, because government whatever, an awesome lady at the hospital billing department caught it, called me, called my referring doctors, and got the referral the day of the MRI.
Long story short, I was laying in an MRI machine Monday night listening to Blue Oyster Cult.

I got the disk before I left so my pain docs have the images tomorrow for the facet injections. If they happen.

I got the radiologist’s report today.

Because something popped up on my MRI. Because of course it did. I am the poster child for one-in-a-million. I figured a hip replacement at 34 years old was rare enough. Then I figured the inoperable brain tumor was rare enough.

But then we see this on the report…

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It would appear I have something called a perineural cyst on the left side (because of course it’s the left side. It’s ALWAYS the left side!!) of T1-T2. More commonly known as Tarlov Cysts and more commonly found in the sacral spine.

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So it would appear that I have some new tests and experiences ahead of me. There’s even a rare disease foundation for the Tarlov Cyst Disease research. As in 8-9% of the population: rare disease. I did what I always do and dove into research (and admittedly I have more reading to do, and I will probably reschedule my “routine” neurologist appointment since my next appointment isn’t until March 1) and it seems perineural cysts are under the “rare and genetic diseases” GARD and/or NORD national Organization for Rare Diseases . I’m nothing if not a research junkie.

I’m still processing. Clearly I have more to read and learn, and doctors to talk to.

BUT: they can’t tell me it’s “in my head”.

Around and Around and Around….

We had 2 people jump off the bridge this weekend! TWO in two days! Well, less than 24 hours actually, I think. Where I live, our local bridge is the tallest thing in 3 counties, so occasionally we have a jumper. I think I read in the 41-ish year history of the bridge, 14 people have jumped and succeeded in committing suicide, and 7 or so have jumped and survived.  The last person to attempt a jump was stopped last summer by cars stopping in the middle of the bridge and people getting out of their cars to talk to the young man.

I should insert here that both of the people (a 20-something year old man on Saturday and an 18 year old girl at 2 am Sunday) survived the jump. They are, of course, in critical condition. Please pause and send some positive energy out into the world.

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I understand what might drive someone to desperate actions. About 12 years ago I had a plan to jump off the very same bridge. It’s a long story, but the rest of it begins with the fact that I didn’t want my kids to have to say “my mom committed suicide….”, so I turned my life upside down and went a little crazy for about a year, but I came out the other side and started putting my life together. We all have dark days and tough times, so I’ll just wrap up this part of the story with…

Just find ONE thing. Doesn’t matter if it’s your kids, your cat, your spouse, or just needing to water your plant tomorrow. ONE thing, and reach out. Somebody cares, somebody loves you, somebody will talk to you or stay with you. One thing, one day, one minute, one more thing, keep holding on.

…..

It’s hard to believe we’re only 22 days into a new year. It feels like a lot is changing. And in my little corner of the world I have some changes too. I’ve been pretty quiet lately, partly because I’m in the middle of a lot.

  1. My sister (in law) passed away 3 years ago now. January 19th was 3 years. I think I am finally learning how to live without her here. I miss her. I talk to her a lot. I hear her voice in my head telling me “Don’t be sad for ME, girl. *I* am off dancing with Bowie and Freddy Mercury!” I know. I miss you, Bren.
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  2. I chipped two teeth in December, thereby forcing me to go to the dentist and deal with the damage from brain radiation. I had 4 fillings last week, and I still have a bit of dental work to get through. I still believe anyone that would choose to be a dentist must have some sadistic tendencies. How many serial killers have been dentists? Anybody know?
  3. In addition to being sore from fillings in my wisdom teeth, I seem to be the only person that can kick my ass. There was some kind of incident with trying to put a metal colander away. All I know is I have a black eye now.
    And I cut my finger when I got in the show to wash my hair. Still haven’t figured that one out.
  4. Finally, I got the release from my neurologist to get shots in my C-spine again after 4 years so I have an appointment for an MRI next Monday for new films (it seems the last c-spine films I had was in 2015) and facet injections into c5 and c6 on Thursday, the 31st. These suck, but the nerves in both arms are making me a little crazy, so I hope it’s worth it.
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    Image borrowed from Google images.

In addition to my normal juggling of kid’s school, theatre, chorus (new this year), and now her orthodontist appointments, I have my pain, neuro, (now) dentist, and scheduling facet injections. If these are successful I can look at moving on to a facet denervation procedure. Oh fun. But if it works, it relieves a lot of pain in my neck.

It’s been busy. There are a lot of changes this year. Here’s to hoping we all make it through it!

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!!

Music is Pain Relief

I typically put up a post on my blog’s FB page every Monday with whatever is stuck in my head that week and I always hashtag it #MusicMonday and #musicispainrelief . Because researchers have shown that listening to music can release endorphins and relieve pain.

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Grey’s Anatomy, season 2, episode 5 “Bring the Pain”. Some pain management ideas are….more controversial. I’m just advocating for music.

…And if you know anything about me or have read more than three blogs, you know I live and die by my music. I always have something stuck in my head and Heaven help the person that might get a hold of my Spotify and wonder exactly how many people share the account. Spoiler: it’s just me, but I have everything from the Hamilton soundtrack to Lady Gaga to Eminem to Disturbed….to the Saturday Night Fever soundtrack…P!nk, Queen, Marilyn Manson, Tesla, Five Finger Death Punch, Supertramp, Bleachers, Melissa Etheridge…. I can do this all day.

Anyway…

The youngest and I went to go see A Star is Born last Friday and I cried. I cried for the last half of the movie. I cried for a few different reasons, some of which I don’t talk about. I’m getting off topic. My point is I’ve had this stuck in my head for four days already and music is pain relief.

Happy Music Monday! ❤ ~ Xun

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