Category Archives: chronic illness

Labs and Crap

Time for my “yearly physical”…..bwahahahaha. Yeah, I know. As someone that sees a doctor no less than every 8 weeks, it cracks me up when I have to go see my primary care traffic director every year. She likes to pretend she does more than bitch about my labs and direct referrals, but we know better.

She’s young and in her defense she’s only had me for a patient for about a year and a half and I’m a pain in the ass. It’s not her fault that she’s in over her head…she wasn’t even in med school when I had my hip replacement.

I went over to the lab like a good girl and had them pull my fasting labs last Monday morning so that she had everything before I see her Tuesday afternoon. They pulled 7 vials out of me!! Pretty sure I should have had a cookie before I drove home, but the good news is I am a super easy stick. No rolling veins or tough spots to try to find. And everything went smoothly, so I’m hoping I was the easiest patient that lab tech had all day.

So of course I had to log into the patient portal and get my labs so I can analyze them before I even see her.

My TSH and T4 levels look like they might have to raise my Synthroid dose. But they’ve been creeping it up for over 10 years. I’m not surprised. It is autoimmune thyroid.

My metabolic panel looks pretty good. Hemoglobin and hematocrit are just barely low, but they’re good for me. Vitamin D and B12 are really good! Yay me for taking my vitamins!

The biggest thing I noticed was my GGT is still high but nothing like it was last year. (I did have MRSA then!) And it’s trending down.

And I got a hold of my Cobalt and Chromium levels from last September and of course they’re high, but they’re normal people high, not MoM implant high. And honestly I don’t care. I’m not open to revision surgery. November is my 10th anniversary of my hip surgery, so the way I see it I’m doing pretty damn good.

More updates after my appointment this week!

 

The Leibster Award

I wanted to say Thank You SO much to Carly from My Hearing Loss Story for nominating me for this award. I started blogging in 2009 or 2010 (I think it was) as a way to figure out the changes life with chronic illness and chronic pain brought. That was post hip replacement/possible Fibro diagnosis/just diagnosed with Hashimoto’s. So in a short frame of time a lot of my life changed. I finished my degree program, started homeschooling my youngest, and moved just about once a year there for a while.

I have made some new friends and learned so much through my little blogging group and finding people that understand and share their own changes and frustrations. It’s nice to know we’re not alone!

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The rules for the Liebster Award:

  1. Acknowledge the blog that nominated you and display the award
  2. Give 11 random facts about yourself
  3. Nominate 11 blogs
  4. Notify them of the nomination
  5. Give them 11 questions to answer

 

11 Random Facts About Xun

  1. I am an only child.
  2. I have three kids of my own.
  3. I used to be a dancer, which is probably why my doctors missed hip dysplasia and all the symptoms that are now leading to an EDS diagnosis.
  4. I am a writer and had some of my work published in a book of poetry in 1999.
  5. I have 13 tattoos and 7 piercings.
  6. I was the first woman in my family to go to college since my great-grandmother.
  7. I have lived in 8 states.
  8. Alice in Wonderland is my favorite story (which lead to Xun in Wonderland!)
  9. My first car was a little ’78 Datsun that my best friend nicknamed “Corky”.
  10. My family goes to the Renaissance Festival every year and I have a full set of garb.
  11. Xunae was created from my WoW character and she’s my alter-ego (and the better, badass version of me!).

My questions from Carly:

  1. Where do you live? Maryland, USA (about 40 miles from Washington, DC)
  2. What is the most delicious food you have ever eaten? Oh! I could go on and on about this! I got to grow up in Hawaii and the food there is amazing!! But my favorite thing and the first thing that comes to mind is Vanilla Bean Creme Brulee.
  3. What do you like to do in your free time? Read (I *love* my OwlCrate subscription box!!), game (I play Diablo 3), watch movies…
  4. Three things you can’t live without… The cheesy answer? My kids. The truest answer? my meds. But the best answer in the spirit of this: books, being able to go be by the water when I need to think, and music.
  5. What is your guiltiest pleasure? cheesy rom coms
  6. Describe yourself in three words. brave, strong, creative
  7. What single quality do you most appreciate in people? honesty
  8. Say something nice about yourself… When I love someone, I love them completely and I will protect them with my life.
  9. Why did you start blogging? to connect with people, to share information, to have an outlet
  10. Something that makes you laugh? my kids, my cats, witty humor
  11. Something you want to achieve or do in the next 5 years. Get off my arse and get my book written.

My nominees for the Liebster Award are:

  1. Kara from Polishing Dookie
  2. Laura from RibbonRX
  3. Pamela from Living in a Limited World
  4. Wendy from Picnic With Ants
  5. Laura from Bipolar for Life
  6. Brittany from Shits & Giggles
  7. Kate from Kate is Rising
  8. Lisa from Life of an El Paso Woman
  9. Sheldon 
  10. Kayla from Intrestinal Fortitude
  11. Migraines From Hell 

My questions for my nominees:

  1. If you opened your eyes tomorrow in a whole new existence, what is the first thing you would do?
  2. What would you eat if you could only have one thing for an entire year?
  3. What’s your zodiac sign? Do you think it suits you?
  4. What is your perfect day?
  5. Who is your favorite author?
  6. Where would you like to visit?
  7. What is your favorite quote?
  8. What is your middle name?
  9. Savory or sweet?
  10. What is your favorite animal?
  11. Who do you look up to?

 

To my nominees: please don’t feel like you have to complete this – I took a couple of weeks before I wrote this up and it takes a bit of time. If you have the time and want to write this up, then please do (I would love to see the answers!), but if you don’t want to share too much info or you just don’t have the time (or energy!), please don’t feel pressured to. I just wanted to share and to let some of the people I read and have met through here how awesome I think they are!

*gentle hugs* and Happy Blogging! (And THANK YOU so much!!) ~ Xun

In The Quiet

I have been pretty quiet on my blog for a bit now. Some of it because I’m going through stuff in my head, other reasons just being that I haven’t had much to report on my illness. Last year I couldn’t seem to stabilize, this year I have.

But it’s July 17. And aside from the insanity of the world and my country’s “leaders”, losses (George Romero. You will be missed.), and life, the universe, and fish; July 17, 2001 is the date my before became my after. Post part-of-my-world-didn’t-make-sense, post PTSD, post Rainbow baby, sixteen years later I am a very different person. And so I usually stop and take stock on July 17.

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The stuff I’m going through in my head? I’m trying to figure out how to want to live again. This is the kind of thing I haven’t touched on in my posts about scans and tests and insane amounts of radiation. We talk about the scans, the tests, the treatments, surgeries, recoveries, and medications of chronic illness, but what about when they tell you it’s inoperable? Incurable?

I got told I have a relatively small, most-likely benign tumor in my brain *but* it is inoperable, incurable, post-treatment (radiation) stable, but I’m still a brain cancer patient. I spent two years (give or take) preparing to die.

Inoperable, chemo’s not an option, radiation means scary complications are possible, and in some cases (brain edema) expected. I fought with my oncologist and refused steroids because the patient cases I read about them scared the hell out of me. High dose radiation scared me, the specific steroids for the brain edema scared me more. So I fought with him and fought through three weeks of brain edema and a trip to the ER that required meds, fluids, and a surprisingly high dose of potassium before they would release me.

Three years later I’m pretty stable. (aside from the awesomely clumsy episode of me dropping cleaning supplies on the bridge of my nose yesterday…….frickin OW)

Last year I couldn’t seem to stabilize. I had MRSA in my lungs and throat and spent almost an entire year coughing up green yuck. Another trip down the stairs. Frontal lobe spikes on my EEG. This year, I finally got my lungs back, I’m still clumsy but the stairs and I have an understanding for now, and I can (usually) finish a sentence.

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My body seems to take a year to get through something. Instead of having pneumonia, getting antibiotics, and recovering; I had pneumonia, lots of antibiotics, 3 different inhalers, and eventually in-home oxygen when my O2 levels dropped under 86% walking around my doctor’s office before, about a year later, I recovered.

Dunno why. But a lot of things take me a year.

Throw an artificial hip (10 years ago this November), a brain tumor, and crappy MRSA lungs at me and I start making peace with my the great hereafter. Or something along those lines.

We talk a lot about life with an illness or during a treatment, but we don’t mention staring into the mirror and making peace with your mortal coil. But it does happen, and we should know we’re not alone. I should know I’m not alone.

So I’m kind of, sort of, coming out the other side of that. I’m thinking this stupid thing won’t kill me. At least not yet.

So while I’m pretty quiet on my blog, my journals show I’m still thinking, writing, struggling. I’m still living.

Me Without Healthcare….

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….

Do You Know What YOUR Brain Looks Like?

I have been terrible with up dates, I know.

“hey Xun….whatcha doin? How’s the brain? Seizures? What’s the little fuuuuhhhnny thing doing in there anyway?”

Well, What I DO know is that

Percival is still hanging around. I have images from this year’s scan that were done on Wednesday, June 7.

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Good news(ish): He IS still there and not like the size of a grapefruit, and if he’s grown, it’s not much. At least I don’t think so….

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Xunnie, a deviated septum, Percival (the kid loves this one with the eyeballs….)

So, not a lot to report on just yet. But I do think I have a demon in my brain….

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Should I be worried? Anybody got any Holy Water hanging around I could maybe borrow for an experiment? =D (Should we name the demon?)

I am hoping to get the report for this MRI in the next few days. I did explain that I was waking up feeling like the bed was shaking a couple of times, and that I had managed to scratch my face on in my sleep. Dysphasia ruled neurologic in origin, aphasia as well, EEG better than the last one, minor changes to my meds.

So….yeah, updates on Percival and me in a couple of days hopefully.  Until then…..
we start with what’s been stuck in my head for 3 days….

Along with stuff in the back of my head, on my playlists, haunting me….

 

There are a lot of memories intertwined with allllllll of the music on my phone, my hard drive, and hell even still the CDs I shepp around!

Xun = Music, Music IS Xun.

 

…Xunnie’s Need for Updates

And now for the other half of the title. I know I have been lax on updates, and I am sorry for that. Lazy, exhausted, overwhelmed. Sometimes there really isn’t much change to report on, and sometimes I have symptoms that I haven’t figured out yet so I don’t say anything.

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But, I have had two different people, from two different parts of my life, note this week to me that they’re seeing me out and about and staying busy, and it got me to thinking that their surprise probably comes from “I have a brain tumor” and then not a lot of updates recently. And if you saw my instagram or my personal facebook page, you might think I have been pretty busy, out and about, and maybe even a little “better”?

Like most chronically ill people I only post pictures when I feel up to it, and I only go out on the days I’m doing okay. What you don’t see are the days it takes me most of the day to get a shower and get dressed, or the days I crawl back into bed because my head is hurting. And that’s my fault. I don’t share the hard stuff.

Even as I’m coming up on my third anniversary of my tumor diagnosis, I still have hair almost to my waist because I had radiation and not chemo. I still go to museums because that what we like to do. I post about going to the movies, but the movie theatre is only 10 minutes from my house, and that might be all I do that day. I get dressed and put on make-up because I feed the shallow, girly part of me. I don’t “look sick” because that scares people.

But I am having some symptoms that may indicate my tumor is progressing. I have dysphagia to deal with now. And moments that might just be aphasia or they might be absence seizures. I forget things or lose words way more often than I’d like to admit. And in the last few months I have had 3 episodes of “sleeping” but feeling like my bed was shaking, only to wake up to quiet at 3 or 4 am. Seizures? Muscle spasms? Dreams?

I’m not sure yet, but I see my neurologist on Monday, June 5, and it’s time for my brain MRI scans (with contrast….oh joy).

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When I was diagnosed in July of 2014, my doctors believed that I have a meningioma or a shwanomma, which should be benign and slow growing. I had some pretty aggressive radiation treatments in August, 2014. So, by no I should be stable and moving towards scans every other year. But I haven’t stabilized yet, and my tumor is too close to my brain stem for surgery.

So, no, I haven’t been as good at updates and postings about life with and without a tumor as I wish I was, or as much as I should be. But it’s time for scans and updates, and I’ll get my act together. I promise! 😉

Happy….

Happy Mother’s Day to you Spoonies in America that have spawn.

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Or…..
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.

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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!

 

It’s Not Like I Need to Breathe Anyway…

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.

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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.

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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.

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My outfit today. Because Deadpool. And because fuck cancer.

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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?

Side Effects

 

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.

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Those are just some of the life side effects, then there’s the medication side effects.

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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.

June 2003

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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.

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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.

The Why

I saw a lot of support for International Women’s Day yesterday, but there was also some really ugly closed minded responses (here’s to the “real women” that didn’t “strike” today). Did you know that *every* March 8th is Women’s Day? And November 19th is Men’s Day? And yes, this year Women’s Day held some extra weight. Because of the events of the past….6 months? (give or take) women are marching, speaking out, striking, 10 Actions in 100 Days.

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I personally lean pro-life, but I’m standing up to make sure Roe V Wade isn’t overturned. I personally lean more hetero feminine female, but I’m standing up for people to have the right to be who they are. I personally am married to a man in a traditional marriage, but I’m standing up to make sure Same Sex Marriage is not overturned in any of the 50 states that it’s now legal in.

I have a mother, and a grandmother, and 2 daughters. I stand up for them. For me. For women that can’t. For my friends, and family, and all of the women in my life that I love. And for all the women before me, after me, and the women that inspire me.  It doesn’t cost you anything to be compassionate and supportive, but it means everything to the peoples that need it now, and in our future generations.

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Chronic illness doesn’t take a day off, chronic pain doesn’t take a day off, life doesn’t take a day off, but I did post a strike notice yesterday on my blog. No, I didn’t march on Washington or lay on my couch and check out for the day. But I spoke out and I supported the women that were doing the marching and the protesting. Because I have daughters. Because I know what it’s like to be a woman in this county, in this time period, in this world.

Why did we speak out on International Women’s Day this year especially?
Because being a woman means….

1. Carrying your keys between your fingers as a “weapon” when walking alone at night.
2. Turning your headphones off (or way, way down) to make sure you’re not being followed.
3. Mastering the “I’m walking quickly but not so quick you’ll know I’m afraid” when someone is behind you.
4. Calling friends when alone in a taxi/Uber/Lyft/walking from the Metro to your car in order to feel safe.
5. Texting your bestie/boyfriend/parents/brother your driver’s details “just in case”.
6. Messaging them when you get home to let them know you’re okay.
7. Sitting near other women on public transport to minimise the risk of being harassed.
8. Pretending to be on the phone in any number of situations to avoid harassment.
9. Giving men fake names/numbers rather than risking them lashing out at being told “no, thank you”.
10. Staying silent when being verbally harassed out of fear if you say something it’ll turn violent.
11. Keeping your drink covered with your hand/ getting your friend to watch it if you need to go to the bathroom/having to throw it out & get a new one if it was unattended at a bar so you don’t risk getting drugged.
12. Making sure someone always knows where you are if you’re going on a first date with a stranger.
13. Toning down statements with words like “just” and “sorry” to avoid being perceived as pushy or aggressive or bitchy.
14. Faking being happy even when you don’t feel like it to avoid being seen as a bitch.
15. Not being TOO perky so that people don’t think you’re stupid.
16. Pretending to be patient when you’re interrupted/talked over repeatedly by men.
17. Spending money each month on period products, which are still considered a “luxury” by men/governments.
18. Hiding said products up sleeves/in pockets when going to the bathroom in public places, because there’s still a stigma around periods.
19. Wearing makeup because you’re conditioned to believe your bare face isn’t good enough
or heck, just because you like it – and being told you’re fake/called false advertising.
20. Or not wearing makeup because you don’t want to & being told you look tired/sick/”you’d be so pretty with just a little make-up”.
21. Debating whether the tweet or Facebook status you’re about to post will result in being harassed,& having to make the decision about whether it’s worth it.
22. Answering/deflecting personal questions about your relationship status/fertility/home life from friends/coworkers, potential bosses, current bosses, or random strangers.
23. Dealing with birth control/side effects if you have sex with men & want to avoid getting pregnant because there’s still no male equivalent available.
24. Fighting with the knowledge that the government (dominated by men) has the power to legislate against your body, and standing up to make sure they don’t.
25. And, finally; dealing with people telling you your concerns aren’t valid, you should stop complaining because “women are equal”. (Also known as the “what rights DON’T women have?!” argument.)