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
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….
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.
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.
Ho-LY ……well, shite I guess. Has it really been a month since I posted?!
Okay, well, lemme think. Where to start? Hair is still purple. Ish. With some white showing on top. Perfect for Halloween!
Life has blown up. And these days I am of the opinion we are all living in some demented SIM/Matrix world? Game? And whoever is in charge of mine is FIRED!!!! And possibly dead if I figure it out.
I have been betrayed! All I can come up with was food poisoning, but oh my jesusmaryjosephmarklukeanddaniel my body betrayed me. Three days of rebellion and I will simply say it required A LOT of cleaning and culminated in me standing in the shower in tears pleading with God for control of my digestive system back. And now we must never speak of this again.
Medical stuff? I am thiiiiiiis I I close to throwing up my hands. I give up. I got all my tests and referrals done, saw the ENT surgeon, had the crazy sinus CT, she deemed my cyst too small for surgery and my deviated septum too slight to need repair. So, I took my crooked nose and off I went.
Labs and ultrasounds and referrals later, my pcm is determined to send me to GI because my liver panel was elevated, and my cobalt and chromium were also elevated. Yeah, they’re supposed to be. I set off metal detectors with my bionic hip.
And I had MRSA for 3 months. Go away. No GI docs, no more tests, no more poking and prodding, enough. I’ll live or I won’t.
I even gave in, went *back* in and convinced pcm-doc to finally do a chest x-ray and send me to pulmonology. Since my lungs seem to work when they feel like it. I got the report from the chest x-ray. Other than the calcium granuloma in my right lung that I knew was there, it says my lungs are clear. Oh, and there’s degenerative changes in my t-spine. I need a new spine. Paging Dr. Torres…..anybody??
Is that everything? I think? Hell I dunno anymore. Like I said, has it really been a month?? I’ve spent a vast majority of the past week retrieving my digestive system, but the 3 before that? School, house, kid, cats, tests, referrals. Yes surgery. No surgery. Oh, and an upcoming mandated pharmacy change because my insurance is full of assholes. So I don’t have a choice unless I want to pay for all my scripts.
It’s been a little crazy.
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….
I used to use that phrase “juggling monkeys” to literally mean my three monkeys (okay 2 of them were roughly my size and are now bigger than me), my house, the aminals, and life in general while Chief was off saving the world.
These days it means more like all the ish that comes with being stuck in this body (seriously, WHO do I speak to about a refund??), homeschooling the youngest monkey, 3 cats, and life in general while Retired-Chief is off building computers to save the world.
Most of the time, everything is fairly juggle-able. (Is that a word? it is now.)
But, throw in a brain tumor that likes to show up via choking incidents and memory impairment, a couple more specialists, some script changes, …oh! and the recent inability to not frickin drop absolutely everything and anything I touch.
PCM (Primary care doc):
Right Upper Quadrant Ultrasound (ordered due to wonky labs): ordered, completed, results received. Normal Abdominal Ultrasound (although she is still threatening to send me to GI)
Thyroid Ultrasound: ordered, appointment 9/13 @ 2 pm
Metabolic lab panel, Liver Function panel, Cobalt blood levels, Chromium blood levels: labs ordered and completed, except for Cobalt & Chromium results still pending
Yearly PAP results are also still pending (but if I pass my pap I may get to go a few extra years without one! Cross your fingers!)
Edit: Update….PAP results are back and normal! Hooray! ~ X
Raised my dose of blood pressure/tremor/anti-seizure med
EEG: ordered, completed, results pending, next appt 10/04
(I’m also supposed to be keeping a pain/headache log)
new doc, saw her today
Reviewed the last 2 brain MRIs I have that show a retention cyst in my left maxillary sinus
Ordered a CT of my paranasal sinuses, appointment 9/14 @ 1pm
Follow up with her 9/22 @ 3 pm. She says if the cyst is pressing on the boney structures, we schedule surgery. But it’s endoscopic outpatient surgery. Ain’t no thang.
I am very, VERY lucky that I have a pain clinic that listens to me and treats me. I put up with a certain amount of crap, but Amy (the PA I see every 6-8 weeks) is very kind and happy to work with the rest of my doctors. They keep my brain tumor scans and reports, and my migraine info on file, and order cervical MRIs every 1-2 years. Amy actually suggested my newest EEG from my neurologist.
Referral renewed for the rest of the year: check.
Scripts renewed until next month: check.
This is me fighting for fewer doctors and juggling tests and scripts. It’s a little crazy right now, but it’s been a rough year. (F*k you MRSA)
I also dyed my hair purple again, inspired by Kara.
AND dropped the damn jar of skin cream on my baby toe. And of course it’s the one with the screw in it. On my left foot. Because of course it is.
(random Xunnie fact: My left side and Tuesdays have it out for me)
Also, can I just point out that dropping the jar on my foot right there takes talent!
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.
Okay, I totally hit a wall yesterday.
A little history….hubs is a retired Navy Chief, but the running joke is that I’m the one with a mouth like a sailor. Until last year, I was the one with the tattoos (he has one now) and piercings. And the mouth. But I’m a college educated lady, thankyouveryfuckingmuch. And typically I’m pretty good about my language. Until I get pissed off-fa-fah! (Did that come across as harsh? Because I was trying to inject a little bit of humor, but I tend to come across as a little harsher than I mean sometimes.)
It’s been an interesting week. Hubs returned from 13000 miles away, kid and I finished one set of classes and signed up for ASL 2 at the local community college (I’m really enjoying learning American Sign Language!), and inspired by Kara‘s recent turn to fuschia hair, I dyed mine London Lilac!
Because purple hair. And Suicide Squad. =D
So, not a bad week, yes?
Until the end of the week started piling up. And now I hate all of my doctors.
I sent an email to my PCM a couple of weeks ago because it was time for my yearly thyroid counts and refilling of the synthroid, because autoimmune thyroid. Only my endocrinologist has since retired and canceled my appointment. So I sent off a message: I need my TSH & T4 tests and my script refilled, do I need to find a new endocrinologist or can you do that because I’ve been stable for over a year?
I get a message back: You need yearly labs and to schedule a physical here. Oooooookie. Whatever. Baby PCM doc graduated med school in 2011 and she’s way, WAY out of her depth with my case, but I’ll play along. Need my synthroid. We can juggle this.
So I make the appointment and go get my labs drawn and we started playing the authorizing my dose for the “tide over” script I need until my appointment. Irritating, but what. Ever.
Meanwhile, I’m also refilling a couple of scripts from my pain doc because they don’t always line up to fill all of them on the same day, and my appointment isn’t until Tuesday with her. Got one. Requested another. No message back. Ugh. Send another message. Pharmacy calls me: we called, they said patient need to get a hold of them. What? Why? At 3:30 on Friday afternoon. Needless to say, no meds for Xunnie til next week.
In the middle of all of the fuckery, I also get another email from my PCM’s nurse. “Your liver function tests came back slightly abnormal, we need a repeat fasting labs as soon as possible.”
What the fuck does that mean??!!
I email him back: Can you send me my labs? and I’ll be in next week. Response? They’re online, you can look them up.
Fine. I spent an HOUR setting up my TOL profile to get into my lab results. Guess what? Say it with me…..not available yet.
(I kinda snapped. That was me hitting the wall.)
- still have to get a hold of my pain doc and find out why they won’t refill one of my migraine prevention meds.
- Have to find out what labs came back with what results and decide if I’m going to fight with them about it. (This is, after all, the same doc that decided I needed a colonoscopy and a fuckload of iron because I HAD MRSA & MY LEVELS WERE OFF BECAUSE I LOST 15 POUNDS. So, yeah, none of that happened.)
- contemplate repeating the labs at some point next week. But they’re 12+ hr fasting labs.
- pain doc appointment on Tuesday and monthly refills
I also have: kid’s photography class next week M-F 1-4 pm, the stupid physical they’re bullying me into on the 25th, my oldest’s birthday on the 25th, new asl classes starting on the 16th, neuro appointment on the 26th so I can ask her about surgery to remove the cyst in my left maxillary sinus so I can breathe and because I’d really like to prevent me getting MRSA again. AND at some point I need to get my shit together and get the kid’s curriculum set up for the coming school year.
All those ^ I can do. Because that’s life, and there’s lots of good stuff. But I kinda freaked out a little and got overwhelmed by juggling my pcm’s demands, whateverthefuck “slightly abnormal liver function lab results” means, trying to fill my scripts and jump through all their damn hoops and follow their damn rules, trying to get a hold of my pain docs, and juggling doctors, scripts and tests.
I don’t want to do this anymore. Life with chronic illness blows.
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.