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
When I’m overwhelmed or there’s just a lot going on in my life, I tend to get really quiet. Yes, I’m aware that when it would make the most sense for me to write it out, cry out to the world, I tend to shut down. Retreat into myself. I’m aware. I still call it a survival mechanism. A leftover from a tough childhood.
The things that hurt…
…on the day my sister (in law) died, my son kicked me out of his life and it’s taken me about a year and a half to get something that almost resembles the beginnings of a start. But he’s my son, that’s my boy. I’ll take the pain. There’s no way I’m walking away.
…I miss B (my sister) all the time. I wonder if I could have done more for her. I talk to her a lot. Which sounds like I’m just a leeeetle bit crazy. But I believe she’s around. I think….I hope that we can have these conversations and she hears me and I can find bits that tell me we’re communicating.
…I miss my dad. I miss my dog. I like to think they’re off in this amazing better version of here. And together.
…And my biggest secret. My wedding anniversary is supposed to be tomorrow. I mean …it still will be. The date marking an event that happened 18 years ago will still exist. But mostly only because I’m still alive, sometimes against my will, and I’m still here. I packed up and left for about a year, 10 years ago. But all hell broke loose in my life and I got scared. I retreated back into a life that was familiar. I told myself I was happy.
Then I got sicker and sicker….
Chronic pain, complications from my hip replacement, pneumonia in both lungs with O2 stats dropping to 86%,leading to in home O2 for 3 months. More surgeries, more treatments, all while a full time college student, all while moving to and through 3 different states, all while trying to make a marriage work and take care of my kids and my family.
Tomorrow is my wedding anniversary, 18 years ago I stood at the base of the Ko’olau Mountains and recited words from an event I wrote.
Now, I don’t even know what “thing” (silver? cotton? silk?) the anniversary stands for. I don’t have a card, or a gift, or a plan. Because I am unhappy. Unhappy as in I go to sleep more nights than not hoping I don’t wake up.
I’m sorry to think that for my mom and my kids, but I just feel like my reasons, my purposes…are done. They’re over and I can go now. I mean I’ve lived through 6 surgeries, septicemia, a brain tumor, radiation, and MRSA . And 2 blood transfusions. When is enough enough?
2016 was an all out, no holds barred suckfest. Universally.
But 2017 leaves me feeling like my life is upside down. I’m unhappy. And I don’t fight…..well, with anyone anymore, but my husband in particular. And very few people know that or know why. But the fight has been chipped away, and there’s not much left.
So, yes, I am very quiet lately. I am struggling. I am unhappy. And those are the kinds of things that leave me retreating into myself.
It’s been a minute since I sent out a missive. When a lot is going on, I think I tend to step away from my blogging, fill it in with journaling, but my introverted nature takes over and I get quieter.
Where to start? Well, my labs from this year’s physical came back and Doc PCM was very pleased with my numbers. GGT came down by 110%, just a hair on the high side, but trending down so more more freaking about about liver function panels, etc. Seem me and my liver are mostly fine! So that was excellent news! Vitamin D, B12 excellent levels, cholesterol came down. The last bit to close that business out is a retest of my TSH and T4 in November to see if a change in my Synthroid might be needed, and that’s easy.
I had the requested thyroid ultrasound, and the report notes ” no nodules seen, finding consistent with Hashimoto’s Thyroiditis.”
So the next adventure will be me submitting a request for a specialist (Rheumatology maybe?) for pinning down that EDS diag-nonsense. According to my PCM (and therefore she who is the primary traffic director) it boils down to a lot of blood tests and my plan of care won’t change much, but (like I told her) my doctors like to have a diag-nonsense they understand. It doesn’t change my life, my care, or how I’m managed right now. I already have “benign brain neoplasm”, “left total hip replacement, Nov. 2007”, and a couple of other CRPS-type diagnononsense, so I get it.
But I know the docs like to have something to pull together all of these different surgeries, pain management, brain tumor, implants, etc. They like it when I have a diagnosis they understand, even if it doesn’t change much for the patient. And with a few of my doctors bringing it up to me, it was worth diving into research.
I don’t do Dr. Google or WebMD…..I read academic papers, case studies, research papers. And when so much fits, and I have 2 of the docs I see the most saying “yeah, go check it out.” I requesting the referral. So, that’ll be my next project.
So I guess that’s all the Xunnie medical updates:
Yearly MRI w& w/o contrast on my brain: Tumor is still there, stable in size. kthxbai.
Yearly physical: good labs, retest T4 & TSH in November
Thyroid ultrasound: measured, noted “Findings consistent with Hashimoto’s thyroiditis. No discrete nodules noted”
Still a brain tumor patient, still interesting to ortho surgeons. But strong and doing better this year.
My youngest daughter starts high school tomorrow and I haven’t quite figured out if and/or how much Imma freak OUT.
It isn’t just my youngest starting high school, it’s just that my youngest is starting public high school and I have been Homschooling her for the last 8 years. So yeah. Big change! BIGBIGBIG changes for both of us.
So after 8 years, it seems I am out of a job, relegated to “just mom”.
It’s good stuff for her, and I am so excited for her to make friends and join clubs, all the good stuff out there!
But as for me, in the quiet, at the end of the day, I stare at the wall and I wonder. Do I freak out? How much? Should I?
My youngest is my rainbow baby (and if you get that, I am so very sorry), she walked early….9 1/2 months old, 2 feet tall toddling ….walking all over the house.
Now at 14, she’s thin and tall…just a couple of inches taller (*spoiler alert: I am not, repeat: NOT surprised my kids taller than me.
And in my middle of this, I try to remind myself to be grateful, #blessed, we are thankfully able to get through all this.
I don’t have to look far to see that people are struggling.
Danny (my MIL’s son) had to have a quadruple bypass, then he had complications.
Nick, a family friend, motorcycle wreck last week , had to have surgery and has rehab and PT coming up.
Another friend , Danny, had ACL surgery.
Jeff had rotator cuff surgery,
Destiny got diagnosed with a brain tumor and is getting fitted for her mask for radiation therapy (a process I’m familiar with….I did it 3 years ago this week!),
and hub’s Aunt Connie passed away (sudden heart attack).
And finally, one of my favorite people just had her Dad move back in. He has advanced lung cancer. He’s a hell of a fighter.
I see all the struggles and I know how hard some of these things are to fight through.
My heart hurts. Reach out. #Loveoneanother. #Connect. #Support. Don’t wait…..tell them they’re important to you.
Hugs, love, positive energy…..<3 ~ Xun
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