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.
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.
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 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.
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 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…..
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.
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…
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
April was nuts. I’m still trying to remember all the things and the stuff and the sharing…
Rehearsals, a concert, prom, tech week….
P!nk was amay.ZING!! And worth every penny for the not-exactly inexpensive tickets! Seeing her was bucket list stuff!
Four weeks of rehearsals for the kid because her school was (is …we have 2 more shows this weekend, and I’m finishing the editing of this post on Saturday afternoon) performing Anything Goes.
Rehearsals were 4-5 days a week, weekends were set builds, and one weekend was a dance intensive workshop to work on choreography. The kids have worked their butts off and it shows! They have put together an incredible show!
We got through the ….um, “stupid” business trip and my husband got back on April 4th. We jumped right into April insanity; meaning 5-6 days a week of rehearsals, me interrupting rehearsals on April 17th to drive up to DC to see my favorite show EVAR, prom on April 21, and then right into tech week. “Tech week” means full dress rehearsals and long days the last week of April. I volunteered food and serving the cast and crew, the band, the faculty, and the parents and volunteers two out of the three days.
Watching how many parents and teachers step up and volunteer to support the show is inspiring. They’re working HARD.
In the middle of tech week, we HAD to get tickets to squeeze in seeing Infinity War because we’re a household of hopeless geeks and I flat out told my kid I have to see it or stay off the internet until we do! Fortunately, we we able to find tickets for an 8 pm showing on Thursday night. (& we squeezed in a matinee on Saturday)
No spoilers. Don’t @ me. I’ve seen it twice so far. I won’t ruin anything for anyone else. 😉
But we will be seeing it again. Apparently we’re masochists.
Finally Friday, April 27 was opening night!
I am so proud of these kids. And I can’t even begin to describe how grateful I am for the teachers, staff, directors, and parent volunteers giving up all the time and work for this production. The kids have worked so hard and *my* kid is ecstatic about the chance to perform and all the support. This is me gushing because this is a new chapter for my youngest and it’s awesome to see her doing the next thing and loving the experience and support she gets.
We’re closing out a long and busy couple of months. One three-week-long business trip, one snowstorm, 4+ weeks of rehearsals, three gun incidences in our schools, one trip to New York, one P!nk concert, six high school musical performances, and one blood draw (yesterday) for new Cobalt and Chromium levels for my ortho surgeon when I see him again in just over 2 weeks.
Gentle hugs, a couple of deep breaths, and and 2000 words later it’s time to move forward. May is Brain Tumor Awareness Month! #gogreyinmay
❤ ~ Xun
Time for my “yearly physical”…..bwahahahaha. Yeah, I know. As someone that sees a doctor no less than every 8 weeks, it cracks me up when I have to go see my primary care traffic director every year. She likes to pretend she does more than bitch about my labs and direct referrals, but we know better.
She’s young and in her defense she’s only had me for a patient for about a year and a half and I’m a pain in the ass. It’s not her fault that she’s in over her head…she wasn’t even in med school when I had my hip replacement.
I went over to the lab like a good girl and had them pull my fasting labs last Monday morning so that she had everything before I see her Tuesday afternoon. They pulled 7 vials out of me!! Pretty sure I should have had a cookie before I drove home, but the good news is I am a super easy stick. No rolling veins or tough spots to try to find. And everything went smoothly, so I’m hoping I was the easiest patient that lab tech had all day.
So of course I had to log into the patient portal and get my labs so I can analyze them before I even see her.
My TSH and T4 levels look like they might have to raise my Synthroid dose. But they’ve been creeping it up for over 10 years. I’m not surprised. It is autoimmune thyroid.
My metabolic panel looks pretty good. Hemoglobin and hematocrit are just barely low, but they’re good for me. Vitamin D and B12 are really good! Yay me for taking my vitamins!
The biggest thing I noticed was my GGT is still high but nothing like it was last year. (I did have MRSA then!) And it’s trending down.
And I got a hold of my Cobalt and Chromium levels from last September and of course they’re high, but they’re normal people high, not MoM implant high. And honestly I don’t care. I’m not open to revision surgery. November is my 10th anniversary of my hip surgery, so the way I see it I’m doing pretty damn good.
More updates after my appointment this week!
I have been pretty quiet on my blog for a bit now. Some of it because I’m going through stuff in my head, other reasons just being that I haven’t had much to report on my illness. Last year I couldn’t seem to stabilize, this year I have.
But it’s July 17. And aside from the insanity of the world and my country’s “leaders”, losses (George Romero. You will be missed.), and life, the universe, and fish; July 17, 2001 is the date my before became my after. Post part-of-my-world-didn’t-make-sense, post PTSD, post Rainbow baby, sixteen years later I am a very different person. And so I usually stop and take stock on July 17.
The stuff I’m going through in my head? I’m trying to figure out how to want to live again. This is the kind of thing I haven’t touched on in my posts about scans and tests and insane amounts of radiation. We talk about the scans, the tests, the treatments, surgeries, recoveries, and medications of chronic illness, but what about when they tell you it’s inoperable? Incurable?
I got told I have a relatively small, most-likely benign tumor in my brain *but* it is inoperable, incurable, post-treatment (radiation) stable, but I’m still a brain cancer patient. I spent two years (give or take) preparing to die.
Inoperable, chemo’s not an option, radiation means scary complications are possible, and in some cases (brain edema) expected. I fought with my oncologist and refused steroids because the patient cases I read about them scared the hell out of me. High dose radiation scared me, the specific steroids for the brain edema scared me more. So I fought with him and fought through three weeks of brain edema and a trip to the ER that required meds, fluids, and a surprisingly high dose of potassium before they would release me.
Three years later I’m pretty stable. (aside from the awesomely clumsy episode of me dropping cleaning supplies on the bridge of my nose yesterday…….frickin OW)
Last year I couldn’t seem to stabilize. I had MRSA in my lungs and throat and spent almost an entire year coughing up green yuck. Another trip down the stairs. Frontal lobe spikes on my EEG. This year, I finally got my lungs back, I’m still clumsy but the stairs and I have an understanding for now, and I can (usually) finish a sentence.
My body seems to take a year to get through something. Instead of having pneumonia, getting antibiotics, and recovering; I had pneumonia, lots of antibiotics, 3 different inhalers, and eventually in-home oxygen when my O2 levels dropped under 86% walking around my doctor’s office before, about a year later, I recovered.
Dunno why. But a lot of things take me a year.
Throw an artificial hip (10 years ago this November), a brain tumor, and crappy MRSA lungs at me and I start making peace with my the great hereafter. Or something along those lines.
We talk a lot about life with an illness or during a treatment, but we don’t mention staring into the mirror and making peace with your mortal coil. But it does happen, and we should know we’re not alone. I should know I’m not alone.
So I’m kind of, sort of, coming out the other side of that. I’m thinking this stupid thing won’t kill me. At least not yet.
So while I’m pretty quiet on my blog, my journals show I’m still thinking, writing, struggling. I’m still living.
This came through my inbox by way of another awesome chick I follow. Her take:
When I read over the healthcare bill draft released to the public last week, I couldn’t help but cry. If this bill passes Senate, I won’t live to see my 40th birthday. This isn’t a maybe, it’s an absolute fact. This is secondary to the millions of others who will be affected by this and I’m terrified for all of us.
Nikki perfectly and succinctly articulates the way many of our government officials view those with disability and hardship – that these problems are self-created by the individuals who are on these programs. Her mock obituary is a sobering view of what the passing of this bill will do to her, myself, and millions of other Americans.
Many of us in the chronic illness community are already fighting to be taken seriously, to have access to pain relief, to be seen and heard. The Affordable Care Act is not perfect, but no option for health care is so much worse.
My friends, my sisters, my daughter….need access to health care. Even without the challenges of an inoperable brain tumor, or a lung transplant, or kidney disease, Crohn’s Disease, or any of the myriad of autoimmune diseases, health care should not be a privilege.
Yearly preventative check-ups, well baby and child care, vaccines (don’t start with me), birth control, or emergency services for when your kid falls of their bike!! These are not unreasonable expectations for a developed society.
Please write to your representatives. Yes, again, if you have to. Stand up for those that don’t have a voice, stand up for your loved ones, stand up and tell DC this is not okay.
Source: Me Without Healthcare….