Happy Mother’s Day to you Spoonies in America that have spawn.
Happy second Sunday in May to those that aren’t in America, don’t have spawn, or are choosing to ignore the muss and fuss today. And gentle hugs. And if someone hasn’t told you that you’re awesome and they’re grateful you’re here, I am. You’re awesome. And I’m grateful you’re on this rock swirling through space with me.
Happy Spring Sunday in May to my sisters, spoonies, fellow strong chicks, and amazing people that need (or don’t need) a day to celebrate or just a reason to remind you that you’re awesome, loved, and appreciated!
Am I being too cheerful or cheesy? I probably am, but I’m also aware that it’s easy to get lost in the everyday and it’s nice to be reminded that you matter. Call it “Xunnie’s learning that she’s lost too many people not to say the good stuff when you can”. Or just “be good to one another” if the first one is too many words.
Also, quick side note, especially if you’re a girl: I just watched “Embrace” on NetFlix. I had donated and supported Taryn’s Body Image Movement way back when it was a picture that went viral and inspired a kickstarter and after finally having the chance to see the result of her hard work, I am honored and grateful to have watched that with my youngest daughter and shared the message.
So, love your body. Even if it’s pissing you off today or it refuses to cooperate. It’s the only one you’ve got. At least right now. And go add Embrace to your Netflix queue.
Xunnie, right before bed a few weeks ago. This is me, no hair done up, no make up, no filters, and no muss or fuss. I spend a lot of time pissed off at this ridiculous body because I can’t run or dance anymore. Because it hurts. Because I don’t have as much control as I’d like anymore.
But in this picture I was actually feeling pretty good that day. I had gone for a walk and it felt good to get out and walk around and look at some trees in the Spring. It was a beautiful day out in my corner of the mid-Atlantic US middle of nowhere, so I went for a walk, and I was feeling pretty good that day.
So happy Mother’s Day, happy middle of May, and gentle hugs.
Oh! I know I have been shit on posting updates. Partly because there’s not always much to share, partly because last month was a little crazy busy for us. But it’s almost time for my yearly scans so I will have updates soon. I have been having some symptoms that could mean my tumor is progressing or growing and I have been putting off going in to get an EDS diagnosis confirmed. But my lungs are slowing healing and I’m not coughing as much anymore, so I’ll take that for good news right now!
Updates soon. I promise!
I’m just having a day ….or something…..this week.
I’ve been blue for the last 5 or 6 days. And when I say “blue” I don’t mean maybe feeling a little sad or down. I mean I am literally, actually blue.
I’m kind of used to it. It started about 9 years ago after I had pneumonia in both lungs 9 weeks after my hip surgery. I can feel it happening, and sometimes it’s stress (I’ve actually had retired-chief look at my hands and walk away in the middle of an argument), or weather, or exhaustion. Or sometimes nothing at all.
I’ve seen more doctors than I can count about it and since these days my pulse ox seems to stay above 95%, they like to just throw it in the Raynaud’s bin and move on to stuff like me choking or the annoying tumor in my brain.
Sometimes it’s not that big of a deal, and I come up with all kinds of colors between pink (I’m pretty sure the color I’m supposed to be) and blue….or purple. The running joke in my house is that I should lay on a table outside for a Halloween “decoration” with just my blue feet sticking out and scare the crap out of people. Yes, we’re an interesting bunch.
I’m just annoyed because I have been really, really blue for the last few days. It’s probably all the crazy weather we’ve been having and today we have thunderstorms moving in and through my area, and that’s almost a surefire way to trigger a blue episode in my hands and feet.
So between my blue fingers and the fact that FedEx lost a box I was supposed to have delivered yesterday, I’m just irritable. (The box was marked “delivered” at 6:01 pm, EDT but unless it’s invisible it’s not on my front porch.) Side note: I called the company and FedEx, got a refund, and put a trace out, but the FedEx delivery for my area are just idiots anyway.
And I’m kind of chewing on the fact that I think I might have made my mom cry yesterday but I didn’t mean to. We were talking about my tumor and I said something about how long I have left and she had to go, but I think I upset her. Because I’m an asshole even when I don’t mean to be.
And fuck cancer.
My outfit today. Because Deadpool. And because fuck cancer.
Aaaaaand I’m back to coughing shit up. The cough has never gone away, and my pulmonologist gave me “dysphagia, related to trigeminal shwanomma” and blew me off with “sit up when you eat and take smaller bites”. I don’t have a $200,000 medical degree but I could have told you that, so whatever.
Like I said, I’m hostile today. And this is all the noise in my head.
Anybody know what it means when you cough dark green….something up?
There are a lot of things that come with having a chronic illness. We talk about the eventual solitude because family gets tired of dealing with doctor visits or tests, and friends fall away because you can only cancel or reschedule time with them so many times before they give up, and before you know it…..it’s just kinda you and a good book or your favorite show.
Another side effect is getting smarter about your illness and/or medication(s). It may be to learn how to survive with your body doing its best to turn on you. Or it may be out of self defense because the doctors aren’t paying enough attention, and somebody has to advocate for you. So without much other support, you learn everything you can about your disorder or disease so you can defend yourself against a doctor that has you and 3 other patients in the next 15 minutes.
Those are just some of the life side effects, then there’s the medication side effects.
Right now I’m struggling with having gained about 15-20 pounds because of one of my meds. I’m not necessarily over weight, but I am heavier than I have been since before I had my hip replacement.
After having been diagnosed with Congenital Hip Dysplasia at 29, I worked my ass off (literally!) to get down to my lowest possible weight for my height and body type in an effort to push hip surgery off as long as possible. I ended up losing 50 pounds total. At the beginning of that journey I was overweight, so I did what I always do and dove into research and figured out what was the lowest weight that was still within a healthy BMI and I changed my diet, exercised every day (I could eventually speed-walk 4 miles in 45 minutes!) and reached my goal weight.
Once I reached my goal weight, I have bounced up or down a few pounds like most people do, but I pretty much stayed at the same size. And now I’m closer to the size I was before I was diagnosed with Hashimoto’s.
I’m not making much sense, am I? Basically I’m just saying I’m struggling with having gained enough weight to go up a dress size in the last few months. And this is one of those side effects from our meds that we may not necessarily say too much about because we’re avoiding more discussions of our illnesses and hoping no one says anything about the size of our asses. Or I am anyway.
The fight in my head is 20 pounds versus lower pain levels, better control of my hands, and fewer migraines. So I guess I’m learning how to live with a few more pounds.
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
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!
Things heard in my house:
Me: “If I go missing, check the river because I’ve thrown myself off the bridge.”
(I routinely threaten to hide under my bed or throw myself off the bridge when I am overstimulated/stressed.)
Kid: “Which one?”
(To be fair, I do live on a peninsula with 2 bridges on 2 different rivers within driving distance.)
Me: “The closest one. I’m lazy.”
I’m pretty sure that was on Tuesday. because suddenly I was juggling 2 more specialists, and several more tests and goawayleavemethehellalone!!
I keep telling my doctors to give me my scripts, and go away and leave me and my organs alone, thankyouverymuch. BUT my primary care doc (pcm, or pcp….whichever you prefer. Invariably I go with pcm.) decided my liver function panel was wonky so she decided I need to rule out Autoimmune Hepatitis (AIH) or Liver Cancer. Because one autoimmune (my thyroid) = another autoimmune. OR one cancer (my brain tumor) = another cancer. Oh fun. Let’s do this.
So she ordered an abdominal ultrasound, a thyroid ultrasound, cobalt and chromium levels drawn, and an ENT surgeon referral to get the cyst out of my left maxillary sinus. (Actually I asked for that. I’m assuming it might be nice to breathe.)
Liver function panel….check
Yearly pap and all that fun stuff….check
Abdominal ultrasound ordered and completed….check
Oh! Wait I have those results now!
HA HA!! Wow….do you mean that it’s entirely possibly that when I was sick as hell for 3 months, it affected my innards and maybe now I’m working my way back? Because I was coughing up green $hit for almost 4 months and now I’m not?
Side note: my aorta and IVC are not unremarkable! I’m beauty-ful. #everyBODYisbeautiful
Also…they can’t see my left kidney because I have a big ol’ hunka hunka metal in the way.
Back to the list:
Cobalt/Chromium levels drawn and sent to Bethesda…check (this outta be fun)
ENT Surgeon referral acquired and appointment made with her on Monday….check
Thyroid ultrasound appointment made for Tuesday….check
And finally, neurologist appointment made for follow-up and EEG results, October 4.
So, other than trying to die by cracker yesterday (this dysphasia courtesy of where my tumor sits….I’m over it), it would appear that besides a hopefully quick and fairly easy endoscopic surgery to get the cyst out of my maxillary sinus, not much is going to change.
Works for me. Back to playing in my make-up.
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.