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’m sitting here thinking….hoping ….if maybe I get the words out and send out a distress cry to my fellow Spoonies I can make it through a crisis of faith in surviving this stupid body. I’m so fucking frustrated right now I could throw something.
It’s been a hard week. And I mean a really fucking HARD week. It’s been the kind of week that makes you feel trapped in a body that you would kick it’s ass…or something….if it wouldn’t cost you even more. The kind of week that makes you look at all SIX of your doctors (none of whom are bothering to sign off for one another or communicate so that I can get a procedure scheduled!), all eight (or so) prescription you fill each month, all the stupid pills and tests, and ….bullshit!!! and cry out to the world:
“WHO FUCKING LIVES LIKE THIS?!?!?!!!!”
I’ve spent three days praying for death/trying to battle back from a flare. One of my scripts is MIA (read: pharmacy says it’s back ordered from the manufacturer, manufacturer’s site doesn’t say a damn thing….screw both of them I don’t have my effin script!). I’m ready to rip my spine out because I’ve been waiting a MONTH for 3 of my specialists to bother to send a form to someone, ANYone at this point so I can schedule a procedure to stick big needles in my neck in the hopes it might lead to less pain in the future because inoperable brain tumor + stupid shittastic spine = pain all the fucking time.
I’m over it. And that sucks because if I get upset, I get twitchy. Like seizure watch twitchy and that just pisses me off more.
Screw this body. I want a refund!!!!!
I got a wake-up call this week. Turns out that you can’t just will away effects from radiation. Especially if you have an autoimmune disorder and your body tends to spend its spare time trying to kick your ass anyway. (See any of my “Life With Fibro” posts.)
It’s only been about 6 weeks since I had radiation treatments. You can make it sound interesting and high tech and say “CyberKnife Treatments”, but it still amounts to some pretty high doses of radiation in relatively short order. I had what amounts to roughly 30 radiation treatments in 5 treatments. Inside of a week. In my brain.
And I’m a pretty strong person. I’ve survived 6 surgeries including a hip replacement at 34, a year of fighting off E. Coli that wanted to set up shop in my left kidney, pneumonia in both lungs, aaaaannnndddd a bunch of other stuff that makes someone stronger than average. I’ve lost 50 pounds the hard way (counting calories, working out every day). So if you ask my friends and family to pick a word to describe me, it’s “strong”.
But right now I don’t feel that strong. I got sat down on my ass pretty hard when I ended up in the ER at 1:30 am Monday morning. I’ve tried to live normally, but nothing about having a brain tumor is normal. I thought I could fight through the ugly side affects, but for both of my family’s annual trips to the local Renn Fest I paid for the busy day and all the activity. The first time we went, I guess I could have expected it to be tough to recover from because it was only a week or 10 days after treatments. But my mom and my son were here and it was important to me to still be me for my family. And I felt like crap the next day but some pain and nausea meds and I made it through.
The second trip was actually worse. I knew it was going to be tough the next day, but I just had more and more pain throughout the day and my normal meds weren’t touching it. So by 1:30 am I was in the ER. An IV and pain and nausea meds helped, but the shocking thing this time was my lab results. I’m always grumbling about how I have crap for an immune system (because I have an autoimmune thing so my body thinks it should attack me). However, if my lab results are any indication, I really don’t have an immune system right now.
My lymphocytes (L-cells for those of you that know what I’m talking about) are off. Like far enough outside of where they should be that people being diagnosed with immuno-compromising disorders see these numbers. Or, as it turns out, people that have had radiation therapy. Also, my potassium was low. Not admit-me-into-cardio low, but low enough that I wasn’t being discharged until I was given potassium. Which means we’re talking about my heart here. Which would almost be funny (not funny haha, but funny wtf) if I hadn’t mentioned to my husband at some point through the diagnosis and treatment options meetings that I always thought my heart would take me out, not my brain.
So, I’m dealing with dropping back a few yards and reconsidering my current situation. When I was first diagnosed with a brain tumor, it was the first time I really considered the idea that this might finally be the thing that takes me out.
I have been through treatment, but clearly I still have a fight ahead of me.
It’s not very often that I stop and feel sorry for myself. I’m typically the kind of person that rolls with the punches and I’ve gotten really good at picking myself up, dusting myself off, and moving forward after landing on my ass a few times (and occasionally pretty hard).
But this week has been one of the those weeks that makes you pause, look at the ceiling and think to oneself “all right…dammit. WHAT the hell?!”. A person can only take so much in any given period of time, and maybe it’s natural for us to stop and look around once in a while and take stock.
Especially if it happens to be in the middle of the stairs as you’re sitting on your ass because you fell again.
I fell down the stairs in November. November 19th to be exact. The day my son left for boot camp and five years to the day after my hip replacement surgery. (That was its own ‘what the HELL’ moment…but whatever.) Turns out I tore 2 ligaments in my foot when I fell so I am currently sporting an oh-so-fashionable sexy boot brace from the knee down for the next 3-5 weeks because it hasn’t healed right yet.
Then I fell again a few days ago. Not down the stairs this time, just on the stairs. I wasn’t hurt…well, nothing but my pride anyway. But I just sat there and started crying. I used to be a dancer and a runner. I took really good care of myself and I have always been in really good shape. So this….this new existence…is really hard for me to understand sometimes. Even if it has been over 10 years now.
I started dancing when I was 7 years old. I ran cross country starting in junior high. The idea that I couldn’t do something never occurred to me. But now I have fallen on the frickin stairs twice in 147 days. (YES, I counted them …stupid stairs)
This isn’t me. When I look in the mirror, I look like me. When I open my mouth, I sound like me. But this is not me. This is some alternate-reality-broken-version of me, but this is not me. This version of me has my hair (well…except for the grey ones) and my eyes…my memories, and all the same people in my life. But this is not me.
I think most people with a chronic illness, no matter what it is…but especially if it’s chronic pain or something really life altering, look in the mirror and wonder who it is they see there. It’s all part of mourning the loss of a part of yourself. And sometimes that can take a long time.
If you’ve read any of my blogs, you know that my life is divided up into the “before” and the “after”. Before is who I was before July 17, 2001 and After is anything and everything after that day. That’s when my life began to change. It started with pain in my left arm and 12 years later it has progressed into 6 surgeries, too many procedures to count, and 2 express trips down the stairs.
I see the girl in the mirror, but that’s not me.