It’s not hard to find an article about the “Great American War on Pain (Meds)”, whether it’s a personal account or news about what our lawmakers are(n’t) doing for us….I mean protecting us from. Screw that brain tumor and spinal degeneration, chick, we WILL SAVE YOU FROM DAH DRUGS!!!!! ( whether you need it or not).
I never asked to be in this club, and I’m pretty sure there’s gotta be others out there that feel the same way, but I can only speak for myself, so other than the linked articles, these words are mine. This has been MY experience. The good, the bad, the really bad, the ugly, and the humiliating.
My personal journey with chronic pain started back in the 90’s with a misdiagnosed congenital leg length discrepancy. (I have congenital hip dysplasia….by itself not surprisingly unusual. But my case….the defect was missed my entire childhood, and then only begun to be discovered via a really ridiculous diagnonsense of “my left leg being 1.5 cm shorter than my right leg. Specifically, my left femur.”)
Fast forward about 15 years, throw a correct diagnosis of Congenital Hip Dysplasia in there (which by now has begun to affect my spine), a total hip replacement surgery, 4 months of rehab and PT, and a good dose of double pneumonia. (Side note: I also had nerve damage in my left arm) and you have somebody rolling into 2008-2009, discovering she has some serious pain.
So once I rolled all the O2 tanks out of my house because they were no longer needed, and tried to get on with my life, I found that I still hurt. A lot. All over.
I got told I was crazy, I got told I needed to see a therapist, I even had “potential drug seeking behavior, potential addiction? Anxiety disorder, h/x of eating disorder. Counseling suggested.” put in my chart.
“You just need some gentle exercise.”
“You just need to find a hobby.”
I have put myself through:
TriggerPoint Injections (still do. Sometimes they actually do help)
Nerve conduction studies in both arms, twice
massages twice a month (GOD I miss Susan, my massage therapist)
Deep Breathing exercises
Cervical Steroid Injections
& Radio-frequency Ablation for C6-C7 (twice)
All before they would consider any kind of drug therapy.
Then I had to run the gamete on all the different SSRI’s, SSNRI’s, and SNRI’s . I failed every 2 week trial. Sick as hell and exhausted, I would crawl back into my doctor’s office and plead with him to change my medication. Every time I had symptoms of Serotonin Syndrome. But I didn’t know it then. (I DO NOT do well on any kind of SSNRanything.)
Then it was Lyrica (pregabalin). Not bad, it worked (sorta), but I gained 30 pounds and my cholesterol shot up to 260 total. So I tapered off that and we tried Neurontin (Gabapentin). Which wasn’t bad, but the higher the dose went, the closer I had to be to my toilet until I finally cried “uncle!!” and told my doc I was afraid to leave the damn house!
This brings us up to 2010, when I moved to Merryland. I landed in the clinic of my new primary care with all of these records and she:
1) Immediately put me in for EFM (Exceptional Family Member status for the families of active duty.) (side note: I got EFM5, if you know what that means you get it. But Chief is retired now, so it doesn’t really matter anymore.)
2) Filled out all my paperwork to get me a disabled placard. She was incensed that no-one else had handled that based on my hip replacement alone.
3) Filled out the paperwork that would allow me to ask for my student loans to be discharged since I now was “officially disabled” and could not work.
4) Referred me to an actual pain management clinic for the first time.
In 2011, I was under some form of anesthesia 13 times for procedures. One for a cystoscopy, the other 12 for various shots into my C-spine. So, anyone can see that I was willing to put myself through just about anything to try to feel better.
Late 2010, early 2011 is when I was finally allowed to have long term pain medication prescribed to me.
Now, I have 6 monthly prescriptions from my pain clinic and neurologist. Three of those I physically have to go pick up the prescription and take it to the pharmacy. Everything is tracked and followed. My doctors and my pharmacists work with me and everybody reports everything to everyone else AND the insurance company.I follow all their rules, jump through all their hoops, never miss or reschedule an appointment with my pain clinic, and I submit to urine tests when mandated.
I follow all their embarrassing, humiliating, difficult rules and jump through the hoops because the pain meds I get allow me to function most of the time. They allow me to run my house and homeschool my child.
That’s all I want to do is live my life, so I play their games.
THIS is the face of a chronic pain patient:
Trigeminal Meningioma, left side diagnosed 06/2014 ; Congenital Hip Dysplasia corrected with a Birmingham total hip replacement 11/2007 ; Migraines, Trigeminal Neuropathy, Fibromyalgia, and nerve damage present in both arms.
I am not an addict. I am not a junkie. I’m a mother, a sister, a wife, a best friend, a daughter. And I just want to try to live the life I have left. And I need my meds to try to do that.
I tend to write after I’ve been chewing on something for a bit. Sometimes it’s just that day, or I might have an idea chasing me around for a few days, and occasionally it might even take me a few weeks to find a missing piece. And the the blog comes together and the typing starts. But, as I’ve said before, I am always writing. I have journals all over the house and the beginning of my third start of a book in a folder on my desktop.
Words are what I cling to the most.
Today’s musings come from the idea that occurred to me today. I am really good at reporting on the scans and tests I have. I share results and treatments. I describe surgeries and have shared my experiences in some pretty incredible hospitals. It’s easy to stick to the facts. Share the scans. Describe which specialist is working on what. It’s easy to hold on to the logical, scientific….sometimes cold, facts and truths of life in pain and treatment for an inoperable brain tumor.
It’s easy because then I don’t have to share what it’s like from the inside. And sometimes I tend to do that. There’s a bucket of reasons.
I’m an only child, and used to being by myself.
I cling to cold, hard logic and science as a defense mechanism.
I figured out a long time ago that it doesn’t matter if I’m scared or insecure and those inside feelings don’t have to match the outside demeanor.
Which means I am really good at appearing aloof, cold, and detached even when I might be scared, struggling, or hurting inside. But you’d never know it.I have a really great resting bitch face.
I was always new as a kid, changing schools just about every year. And always a little bit younger than everyone else, and smaller. I was 4’10” when I started high school! So I figured out that it didn’t matter how scared or shy, insecure, overwhelmed I was feeling, it only mattered what the image I put in front of them was. It doesn’t matter if I can or can’t kick your ass, just as long as you believe that I can.
I have been told by people that eventually became close that at first they thought I was “cold, aloof, stuck up”. I hope I’m really not any of those things, but I do know I am very good at putting on an appearance.
All that being said, today I realized I don’t write a lot about what it feels like in here; brain tumor, artificial hip, and all. Truth be told it occurred to me because I have been a frickin bitch about my manchild having a stupid cold. (Mostly because the last time we did this, it was a thing. FOR MONTHS)
I have no immune system. This is well established. Start with autoimmune, throw in some radiation, and sprinkle a little of the MRSA I had in my lungs for 2 months last year. No immune system. No, none, nada, no-thing, nien, NADA. My family members get a cold…..I get pneumonia in both lungs and end up on in-home O2 for 3 months.
However, it is cold-and-flu season in the NorthEast. And people are stupid. So after my oldest daughter told me she had a nasty cold, I knew there was one lurking in our town. (She doesn’t live with me, and she’s better now, but still….)After 2 nights of sleeping next to Mr-sounds-like-a-freight-train and not even my earplugs were helping, he declared he did feel a little…sniff, sniff….maybe a little congested or something. And went to go sleep in the spare room. (Or as he put it last time “I gotta sleep in frickin Siberia!!”)
By last night he sounded like shit, and to my delight, today I got up to him “I decided to work from home today!!” I don’t let him within 5 feet of me. Don’t touch my stuff, don’t breathe near me.
It might appear that I’m just being a bitch, but…
I am very sick. The symptoms of my tumor are progressing. I’m having a harder and harder time remembering things and I struggle with swallowing and/or choking at least once a day now. The choking thing scares the shit out of me. But you wouldn’t know that because I’m just being a bitch.
So yeah: the outside is Xunnie being bitchy because retired-Chief-manchild has a frickin cold (and men are such babies).
“Don’t touch my stuff.”
“Go…..away. Go stand over there.”
“Go take your cooties somewhere else.”
The inside? I’m scared. I’m struggling these days anyway. I have a hard time swallowing at least once a day. I still have that stupid cough. It’s time to head back to pulmonology and plead with them to just finally schedule the broncosopy because I still cough up green uck. Between the rise in clumsiness ( I HATE stairs), the increasing trouble with my memory, and the everydamnday choking thing, I’m thinking when I see my neurologist in 2 weeks she’ll probably be thinking more scans wouldn’t be a bad thing. We don’t know how fast this bad boy is growing yet.
So, the inside and the outside don’t match. Don’t let this bitchy face fool you. I’m hurting, I’m scared, I’m spending time making my peace with dying.
Outside I’m cold and kinda snarky. Inside, I’m just a little girl that’s been alone a long time.
I happened across a news story this morning in my daily perusal of news and what’s-going-on-in-the-world that struck a nerve with me. It has nothing to do with my usual blogging. Actually, no, that’s not entirely true. I have an all metal hip replacement in my left hip, and that fact does come into play in my story. I take it back, it kinda does relate to my usual blogging of “noise from a chick with disabilities”.
ANYway, I have traveled pretty much my whole life. Between growing up as a kid that moved a lot, and then marrying a guy in the Navy, it’s been pretty much a guarantee that my friends and family would be in a different part of the US than I was. Typically it’s fine. I’m not afraid of airplanes or road trips.
This particular story relates to an article posted on CNN three days ago. Angela Rye was “selected for additional screening” and shared her experience. I read through her article and I got it. I mean I really related to it because I’m a woman, and we don’t appreciate being physically accosted for security theater, and because I have an artificial hip (which makes traveling fun). All metal, my entire left hip. It sets off metal detectors.
I know that it will most likely set off their metal detectors. I tell them I have a hip replacement. I have all the paperwork to show I’m just a chick with an implant. I tell them to stick me in the scanner and they’ll see it. I explain everything, and although I have been subjected to “additional screening” for longer than most people, I have complied because I knew it was easier for them to stick me in the scanners that let them see everything than it was to fight with them.
The first time I traveled after my hip surgery was about 7 weeks after surgery. I still had my cane then, so it was pretty easy to see I was just a chick traveling and not a threat. *But* the last trip I went on a few years ago to fly out to my mom’s in California -that trip- taught me a thing or three about what a hurtful experience feels like all in the name of security theater.
I checked in and made my way through the security check points. I had a carry-on and my youngest daughter with me and we were on our way home after a week or so in California. I told the TSA agent I had a metal hip before I stepped through the metal detector. It dinged, unsurprisingly. I explained that it they let me step into the scanner that was right there two steps away, he would see my hip and I could go about my merry way.
“Nope, you set off the metal detector. You need to be checked.”
SERIOUSLY??!! Have you seen any thirty-something, small, white, redheaded moms terrorizing anyone lately?!
Not only did they subject me to a full, humiliating pat down, no that wasn’t enough. They:
Made me strip down to my tank top and jeans, telling me to take my hoodie off in front of Gawd and everybody.
Insisted on keeping my daughter 10 feet away from me
Wouldn’t let me touch any of my own stuff or my kid
Searched my carry-on and my daughter’s backpack
and finally, ran her fingers through my hair, under the waistband of my jeans, up my thighs, over my chest, butt, stomach…you name it.
The entire thing was embarrassing and humiliating. But worst of all, on top of them taking all my stuff away from me, was my kid seeing them search me like I had done something wrong and not allowing my 10 year old daughter near me.
The final kick in the teeth? After everything was said and done, and I got my kid and my stuff back, we made our way over to the gate to sit down for a minute and wait for our flight. Not 5 minutes later a lady walked over, sat down at our same gate, and reached into her bag for something and pulled out a full bottle of water that she had opened, taken one drink out of, put back in her bag, and made it through security!
“Oh! ha…ha….I forgot I had that. Whoops.”
(The water thing wasn’t her fault and I wasn’t mad at her. It just illustrates that the TSA is a joke.)
#TSAVaginaMonologues #SecurityTheater #travelingwhiledisabled
Is “Life as a ping pong ball” too long of a title for the blog entry? Yeah, I kinda thought so, which is why it’s just “Ping Pong”.
A couple of weeks ago I updated with having seen the pulmonologist who bounced me back to my neurologist, thinking the cough, choking, etc could be related to the brain tumor which happens to be hanging out on/near the left 5th cranial nerve which likes to control swallowing. So, in short, pulmonologist-doc thinks it could be neurological.
I bounced back to neurologist with this info, and after a bunch of insurance and referral bullsh…..stuff, I finally got the swallow test scheduled. Because how much fun does being put under a fluoroscope and given barium to swallow sound like?! I know…..I know…..calm down. You all can’t have allllll my fun.
Anywho, next week (the 15th) I have the modified barium swallow test scheduled. Which, I think means they’ll try to see if they can make me choke? or something? And neurologist-doc says “I hope it’s not neurological” and if I pass? fail? prove that it’s not neuro, then I get bounced back to pulmonology.
It’s just been a hell of a year, hasn’t it?
2016 has been rough. For a lot of reasons, and for a lot of people. Tis the season to remind everyone that they matter, and send goodwill and cheer and all that. Please don’t think that I don’t. I’m just kind of stuck myself. By February, I began to wonder if I was going to live through the year. So many losses, so much hurt and heartache this year.
And sometimes I just get so tired of trying and fighting and this insane purgatory of too-much-of-this-and-not-enough-of-that. I have a brain tumor, but it’s not terminal. I’m sick, but not critical. I’m well enough that I’m expected to do most of what I did before I got sick, but I’m afforded time if I need it. I’m exhausted, but still functional. Too much of this, not enough of that. And I live in a world of a constantly changing pain scale.
In pain, but most of the time I manage.
Sick, but (usually) well enough to function.
Disabled, but (usually) capable. Sick, but not infirm. Pain, but only so much.
Life as a ping pong ball. So, yeah, occasionally I hit a wall.
My body, my mind, my heart hurt so much sometimes I can barely breathe. So I remind myself to.
In a world full of hard surfaces and sharp edges, sometimes I wonder why I fight so hard through the pain. When it all feels too big, and too hard, and it hurts too much…I keep fighting.
I’m hurting, but I’m trying. I’m a ping pong ball.
I’ve had so much stuff rattling around through my head. It always resets me when I see that I haven’t actually posted in a minute because I am always writing, but I guess it takes me a bit to write through my journals for enough time and words to come together for me to make the hop into publishing it. But…okay, here we go!
It’s just been such a weird year. I was scrolling through twitter and saw a re-tweet I sent a few months ago : I hope 2016 doesn’t get renewed. The plot is ridiculous and none of the characters are likable.
Between my own personal journey around the 4th gate of Hell this year, and losing so many people, this insane election season, and now we careen toward the end of 2016. Anybody wanna come hang out in my blanket fort and color til the crazy moves on? Can it? Would it? Where would it go? Can we get together and vote it off the island?
The good: The Cubbies won the series!!!! Holy ssshhhhhhhhiiiiiitttt! I am personally not a fan. Of baseball or the Cubs, but my Bren was a YUGE fan I just know she was up in Heaven dancing her ass off the other day! I spent half the day after the Cubs won talking to her. Just wondering around my house getting stuff and telling her I knew she was so excited. And how weird it was that they won, they *finally* won 9 1/2 months after she passed. She died and they won in the same year. Idunnoknow. I just miss her. And her Cubs won!
Bittersweet. I have so much joy knowing her team won, and all I can do is close my eyes and know she is up there dancing and celebrating!
On a different, but related, note. I saw today that one of my friends I play games with online lost her granddaughter. My heart is absolutely hurting for her and her family now. I watched through FB posts as she shared the unbridled joy of becoming a Grandma less than 2 years ago, and the fear & struggle as baby girl was diagnosed with neuroblastoma at just over a year old last December. And today I open my FB feed to see her post that babygirl had passed late Thursday night/2 am Friday morning.
Don’t wait. Tell your loved ones you love them. Don’t let your last word be in anger. Don’t wait. Life happens in real time…..one of my favorite sayings and it reminds me there isn’t always tomorrow or next time.
So send out some positive energy, or a prayer, tell someone you love them, hold on to the good stuff. It all happens in the blink of an eye.
Quick update on me:
It’s becoming more likely that I have Ehlers-Danlos syndrome. Two of my doctors have brought it up, with my pain doc advocating for me to go back to my PCM for the testing.
I have a referral to a pulmonologist this week. I choked waaaaayy back in February, had MRSA in March & April, and I still have a random cough, with an even more random productive cough. My chest xray was mostly clear, but my PCM and the ER both suggested a broncoscopy, so it’s off to see the guy in charge of throat-lung scopy things.
Meds are mostly stable, but frustrating. I am so over this damn “drug war”.
Minimal T-spine and C-spine degeneration and slight curvature. Scoliosis and Pectus Excavatum noted in my chart.
I’m blowing off my GI referral. Still don’t think I need it. Off to pulmonology instead. At least that one makes sense right?
At any rate, I think that sums up most of where I’m at right now. Think I may start an extra tab with my diag-nonsenses.
Hugs & an extra hour tomorrow! XoXo ~ Xun
So I sent out an update at the beginning of the week because against my will I have been plagued with some extra tests and referrals, and after a bit of a crazy week (and I’m kind of a zombie today), I have updates!
…and purple hair. Much purpler than last time. My hair is almost to my waist, so I used 2 boxes and there was purple dye everywhere!!
Back to the updates…
Right Upper Quadrant Ultrasound: Normal (HA!! take that Liver!)
Thyroid Ultrasound: Findings compatible w/history of Hashimoto’s Thyroiditis
All blood labs drawn and completed, Iron panel recheck in November
Cobalt & Chromium levels pending
yearly physical completed and okay, PAP results returned normal, PAP recommended in 5 years, August 2021, unless otherwise indicated.
EEG completed 8/29
Follow up 10/04 for EEG results and for migraine and TN pain following (f*k you tumor)
referrals renewed for the rest of the year, new referral due on or around March 5, 2017
scripts current until follow up with PA on 10/04
saw ENT surgeon 09/12
CT paranasal sinuses completed 9/14 (that was weird, face down. Did you know the whole CT machine can tilt 45 degrees??)
small mucosal retention cyst in left maxillary sinus, nasal septum deviated to the left
follow up 9/22
(did I say my left side has it out for me?!)
Also, stupid left baby toe is pretty colors and I’m fairly certain I fractured it, but meh….whatta ya gonna do?
Finally, I ordered a myintent necklace because last week during the Stand Up 2 Cancer telecast, they were participating and offering 10% off and all proceeds going to SU2C. Because Stand Up 2 Cancer. Retired-Chief and I have both lost our Dads to Cancer, my best friend beat stage 3 colon cancer 12 years ago, and I’m living with an inoperable brain tumor. So, it’s a cause close to my heart.
I choose “I rise” because I try to rise above the pain and fear. And because I’m in love with this song….
In June of 2014 (2 years ago), I was diagnosed with a left trigeminal meningioma and spent lots of time in scanners (CTs, MRIs, you name it…) before being sent up to Georgetown for a week of stereotactic radiosurgery (aka CyberKnife radiation). It’s like having radiation, but it’s sort of a surgery too. Mostly, it’s just like having 30 radiation sessions in a week.
I still have Irkle…
So named because he doesn’t do much except be irksome and irritating.
But he’s stable. Mostly.
Georgetown kicked me back to my local neurologist because Irkle is so close to my brain stem he’s inoperable. So there’s not much to do but keep an eye on him.
And burn my mask. Which I did last August at the one year mark of surviving radiation.
So, two years of scans and meds and many, many doctors later, two of my doctors decided I need a repeat EEG. Not fun, but whatever, because any seizure activity I seem to have seems more absence seizure that flop-around-like-a-fish seizure. And Irkle’s not giving up much info.
So today was EEG day…
The worst part about it is washing all the crap out of my hair after. And the hyperventilating part, but today’s wasn’t so awful. And I had a really nice tech.
Okie dokie…..all wired for sound and picture. Time for the pretty lights and the heavy breathing.
So, now we see if my brain is doing crazy brain stuff. Results tbd.
So……this popped up in my Facebook feed and I decided to go check it out because chronic pain is about the most unfun thing you can think of, and in the middle of the full on assault of patients rights to be treated compassionately for pain, we in America are always struggling for pain relief. And the fight for doctors, nurses, PT nazis ( if you’ve through physical therapy, you get that), nurses, hospitals, the frickin FDA, and now politicians to stay the hell out of my pain management is never ending.
That being said…post cancer treatment pain management: second verse, same as the first.
As a chronic pain patient, I have to follow blogs and news relating to the management of intractable pain. Because in addition to the “surprise urine screening” and all the damn hoops and rules I have to jump through just to try to survive, I need to know what’s going on and what my rights are.
If you’ve ever been to the doctors because you were in pain, you know that you’re in trouble the second you say “pain relief”. And Gawd help you if you happen to have ovaries too, but that’s another blog. I don’t know when, and I don’t know how, but somewhere along the way asking for pain management or relief equaled “drug seeker/addict”. I’ve been called both, and I’ve fought to have crap like “anxiety disorder”, “eating disorder”, or “possible addiction issues” removed from my medical file.
Because apparently Cervical Spondylosis, chronic migraines (and oh yeah…..that traumatic brain injury I had when I was 7), and now an artificial hip, and an inoperable brain tumor do not make me anything but a “drug seeker”.
However….comma….I am pretty lucky because I have a pain specialist that sees me every 4 to 8 weeks, listens to me, and allows me to handle a lot of things by messaging them. I also have pretty good insurance, and I know that, and I’m grateful.
But, when I got the latest news from Pain News Network in my email today, I read through one of the first articles they recommended: a perspective of living with chronic pain from a medical doctor.
Wow. I nodded all the way through the reading. Oh thank God….someone on the inside that gets it. Please read, please share.
(BTW, I realize I haven’t been blogging as much lately. There’s a lot going on in my life that’s not necessarily for public consumption. But I *will* update soon on this year’s brain scans. ~ X)