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 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.
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.
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.
I actually have been working on another draft about life, the universe, and everything as I come up on four years since I was diagnosed with a brain tumor, but last night I had a melt down and went into crisis mode.
I see my pain specialist more than any of my other doctors and because I live in a state that is making progress, but still leaves a lot of room to be desired on the part of chronic pain patients, I get my scripts filled every 28-30 days. I have five scripts that have to be filled every month and another three that get filled every three months (muscle relaxers, synthroid, etc). Of the five, I have three that *must* be filled every 29 days (give or take a day).
I follow all of the rules. I sign my “contract” every year. I jump through all the damn hoops pain patients have to fluffing follow. I accept that the doctors, the pharmacists, and my insurance all fluffing track me. I have had the same pain doctors for over 6 years. I had the same pharmacy until last year when insurance made the choice to kick CVS out of our plan, so I went back to Walgreens. I live in a fairly small town, so I see the same people every month.
I follow all the damn fluffing rules!!
So, when I went to get my nighttime doses of my meds last night and realized I do NOT have the number of long acting pain pills I should have I panicked!
I don’t know why I didn’t notice sooner, but I last filled my scripts about 10 days ago, so I was missing about 2 weeks worth of pain meds. I freaked the **** out. If you know what it’s like trying to fill a schedule II script, you understand the fear that comes with not having your meds or being able to account for it. The rules are: we don’t give a fluff if you lost them, flushed them, or had them stolen. YOU are responsible for your scripts and your meds, so buckle up.
The one fear my husband has is not that I’ll have a seizure halfway down the stairs and the cats don’t know CPR, or that I’ll forget where I live and not be able to drive home, or even chocolate milk. (seriously, how many people almost die by chocolate milk? …..don’t answer that.)
It’s that something will happen and I won’t have my meds. Because that means withdrawal, and we both know I ain’t surviving that. Judge me, but my pain scripts mean I can be a “theatre mom” for my youngest. Or clean my house. Or get the grocery shopping done. It means my husband can work, and travel when he needs to, and I can run my house and be a grown up.
But suddenly, I did not have the ability to survive until my next script would be filled. I collapsed in fear. I didn’t even cry myself to sleep as I tried to figure out what to do. I just sat there in terrified silence, contemplating ….well crisis mode.
Fortunately my husband figured out that he needed to go talk to the pharmacy because if their pill count was off I could prove my script had not been filled properly. He was at the pharmacy this morning when they opened and went over everything with the pharmacist. They checked my file, checked their pill count, and discovered they were “over” as many pills as I was missing. It ended up being a relatively easy fix with a lot of apologies from the pharmacist, and the whole thing was over within 12 hours.
This is the world I live in. This is why I jump through the hoops, and follow the stupid rules. So that in the event something like this happens, I can show that I am a good and cooperative patient. Today I’m still feeling a little fragile, and my wrists are a little sore from being in a dark place. (No, I didn’t actually hurt myself. But I was definitely in crisis.)
I live in a very small box, with a lot of rules, and not a lot of room to fight back. This is the reality of being a chronic pain patient in the US right now.
I have literally been meaning to write an update for over 2 weeks, and then I got a comment giving me the “hey, you good? you needa post” and I realized how unbelievably overdue I have been for blogging. I’ve been working on a post in my head for the last 10 days (ish), but it seems I don’t have Jarvis to translate that noise into an actual post. Who knew?!
So….um, where to start? My last post was me losing my ish over a school shooting here in our little rural we-have-Amish-buggies-sharing-our-roads and it brought everything up close and in my face.
That was immediately followed by the National Marches…
…and a lot of noise and conflict across the country. I know people on both sides of the debate and having spent the last 4 years or so teaching my kid American History I understand the need for debating this issue. But then…
Just 3 weeks after the March for Our Lives (March 24, 2018) an 8 YEAR OLD was arrested for bring a loaded handgun to school on April 18, 2018. IN MY COUNTY. In my little corner of rural small-town America. And I lost my shit.
THREE gun events in our little county. In. ONE. School. Year. so far.
That is not okay. I am not okay.
The first one: two students being arrested for threatening to shoot up the school MY kid goes to just 2 days after the Parkland shooting. They were heard and reported and it was stopped, but how terrifying is that?!
The second one: The shooting at Great Hills High School. That affected us up close. There’s only three high schools in our county. 1400+ kids were evacuated from GMHS to LHS for reunification. Jaelynn Willey’s loss affected us all. We’re a small community and the shooting was an unimaginable shock.
The third one: an 8-year-old being arrested for bringing a loaded handgun to school. A third grader. Both parents are active-duty military. A girl on his bus saw it and reported it.
The kids are being told over and over and over again “See something, say something” and they did and it stopped two tragedies this school year. But it is breaking my heart. We’re scared. We’re frustrated. This is insane.
February 16, 2018
March 20, 2018 (Jaelynn was taken off life support on 3/22/18)
April 18, 2018
These are the dates that affect us right here in my town. This is a nation-wide debate but right now it’s up close and in my face and I can’t breathe and I don’t know what to do.
In the last month I’ve also had a lot of really awesome stuff keeping me busy and I’m going to write up a part two to the updates and try to get that published tomorrow. But it’s been busy and crazy and hard stuff is in my face and this hurts and whattheHELL?!!!
Yes, there’s lots of good things and experiences I’m going to share. Yes, we have been lucky and my child is safe but I’m processing.
More updates being written and I promise they’re the good stuff!
❤ ~ X
So…..um, hi. It’s been a minute. I can honestly say I have been meaning to sit down and write out an update since my last post was…..um, a minute ago. But I plead that we have had 3 birthdays, 2 holidays, 1 school play, 2 auditions (the kid), 1 school break, 2 doctors appointments, 3 scans….and a partridge inna pear treeeeeeeee!
Overwhelmed by holidays and birthdays and general end-of-the-year insanity, I kept meaning to send out an update, but when I had time, I didn’t have motivation. And vice-versa. I kind of managed to get through holiday insanity this year, but I’m not really sure how because it felt like I didn’t have enough time or my act together. But….we made it.
So. Updates. I actually have something.
My yearly check-in with Dr. PCM-Traffic-Director last summer lead to follow up labs 3 months later in November, and surprisingly Doc added Cobalt and Chromium checks to my labs. B12, Iron panel, TSH, T4, CBC were all pretty good. Most of my levels have stabilized since the MRSA mess of 2016, and thyroid levels meant no change in my Synthroid dose. But my Chromium and ….well, mostly my Cobalt levels sent doc to an ortho surgeon referral.
I have a giant hunk of metal for a left hip. I’ve covered that pretty extensively in the past…
…and November 19th was the 10th anniversary of my hip surgery. Diagnosed in my 20’s, snarled at and told to lose “as much weight as I can”, and several ortho docs attempting to get me close to my 40th birthday (I had the surgery the day before my 34th birthday) later, I got a shiny new hip.
My docs have just started watching my cobalt and chromium levels in the last 4?ish years and I have learned that there’s:
- normal cobalt and chromium levels
- high cobalt and chromium levels
- implant level cobalt and chromium levels
- high implant cobalt and chromium levels
and unfortunately us implant patients pretty much all eventually end up climbing the ladder.
Right now my Chromium levels are acceptable (2.0: 0.1-2.1 mcg/L serum), but my Cobalt levels are creeping up (2.3: 0.0-0.9 mcg/L serum), so off I went to a new ortho surgeon.
Ortho docs like my case. They get to learn from me and I’m a pretty unusual case. At this point it’s labs and x-rays, basically yearly. I have a whole file I keep with my op report, yearly scans, etc. Ortho doc went over my case, read my file, checked my labs, examined me, and sent me down for this year’s scans.
Two things popped up this year.
One: it seems pseudotumors can pop up around the implant area, and my cobalt levels indicate that may be the case with me. He found one spot in particular to watch, but conceded it could reabsorb on its’ own, or it could just be bowel gas. Options for further studies include a higher level MRI to account for the affect from the metal or an in-office procedure to get a sample from my hip to test cobalt levels. I told him “That does NOT sound like fun.” He just looked at me.
Two: I have Myositis ossificans (calcified muscle tissue). Huh. I didn’t know that could happen.
So, after I told him shoving a giant needle into my hip joint wasn’t my best idea for fun, he conceded that he could check my levels again in 6 months and we can go from there. He seems pretty good, and I like him. I think the only argument we may have is if he decides I need a revision. I’m not really open to hip replacement revision surgery. That’s why I had the surgery I did 10 years ago. But it’s really interesting that most people just assume I would have the surgery.
I guess we’ll see…the story continues in June….
Did you know P!nk has a new album out? Yes? No? Xun, what does this have to do with anything? I love Pink. She’s a better, badass, outspoken version of who I want to be. I have lyrics from one of her songs tattooed on me…
…because I tend to be pretty self destructive and I want to give better words, better directive, better inspiration to my daughters. So I try to teach them, and I try to live the words… “Change the voices in your head, make them like you instead”.
Have you ever listened to the way you talk to yourself? Women, it seems, tend to be pretty unkind to themselves. Would you let someone say something you tell yourself to your loved one? Your mom? Your daughter? Your best friend?
My point is I have been listening to Pink’s new album on repeat because I woke up with What About Us stuck in my head.
It feels like there’s always so much going on. Wildfires, threats of war, natural disasters. How can you breathe when the world gives you so many things to dodge and worry about? I have family and friends in Northern California too close to the fires right now and I hate how helpless I feel. But I know that they are all staying on top of the news and keeping tabs on each other…
“You good? No evacuation orders?
“Nope, we’re good here. You?”
“Yup. Good so far here too.”
“Okie dokie….stay inside. Can’t breathe out there.”
My mom, my son, my uncle….I’m worried and I wish I could just put them in a bubble and bring them here where it’s been raining for the last couple of days. Just long enough to be safe…
Maybe that’s why I woke up with another black eye today. That’s the hidden truth of chronic invisible illness. What you see is not my reality.
The picture on the left is me just out of the shower, no make-up, half way between what the rest of the world sees and what nobody sees. Dark line under my left eye, and something that almost looks like a bruise on my left cheekbone. The picture on the right is hair and make up done and what I show the rest of the world.
One of the biggest reasons I think “invisible illness” is invisible is because on the days that the flares, the pain, the struggle is the highest, we disappear. I know I do. If my pain levels are higher than I can handle I tend to go off line. No social media, no writing, no phone calls, no connections. And call it vanity, but I definitely don’t leave the house if I look like crap. In fact, anyone that knows me knows I almost never leave my house without my hair and makeup done.
Just because you don’t see the struggle, the pain, the fear…doesn’t mean it’s not there.
What about us?
What about all the times you said you had the answers?
What about us?
What about all the broken happy ever afters?
What about us?
What about all the plans that ended in disaster?
What about love? What about trust?
What about us? ~ P!nk