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….
So in spite of my best efforts to ignore anything that even remotely resembles a birthday, my mom called me today to remind me I have a birthday tomorrow. We disagreed about exactly which birthday it is. Suffice to say we’re (read: I’m) going with I’m 36.95 plus shipping & handling.
BUT one thing we can agree about is 10 years ago today I had my hip surgery! A cutting edge, new, all-metal hip replacement designed to last the rest of my life. At the time of my surgery, it had only been FDA approved for about 14 months, and from what I can tell, it is not done much, if at all, anymore. And I was unbelievably lucky enough to have the #2 U.S. surgeon, who had, in fact, traveled to Birmingham, England to train on the surgical technique!
So today I celebrate that I have a hip I can still walk on, and I am grateful every day for that ability!
Whether or not my brain tumor is related to said hip implant remains to be seen, and they just drew Cobalt and Chromium levels last Thursday, so I will keep you up to date when I get the results. I already know my chromium levels are high, but they’re normal-people high, not implant-patient high. Or at least they were 2 years ago.
Whatever. Ya’ll ain’t getting my implant back. I am not open to a revision surgery. It’s really damn hard to learn to walk again in your 30’s.
Side note: also, 15 years ago I was within 12 days of delivering my youngest child, my Rainbow Baby, my miracle I went through Hell and high-water to have.
And the last thing to share this week is that I got to do a bucket-list, incredibly cool thing last Friday night. We went to the Kennedy Center and got to see FLUFFY!!! (Gabriel Iglesias!) (& if you know who that is, you know how funny he is!)
I don’t think I have ever laughed as hard as I did at his show. I had tears rolling down my face, bright red (thank goodness for awesome water-proof mascara). It was one of the best things I’ve gotten to see!
We had awesome seats, second row, stage right.
So, Happy Birthday Hip. I got to see Fluffy. And cobalt & chromium levels coming this week!
*gentle hugs* ~ ❤ Xunnie
Merry Samhain! Happy Halloween! And a good boo! to you all!
Today is my last day of my Photos From My Life series. Did you guys like anything in particular? I always think it’s interesting to see photos from someone else’s life. Where are they? What do they tend to take pictures of?
Some people take pictures of places, or things, moments, or other people so they can hide behind the lens instead of being in front of it. Some take pictures of places and people they love to remember.
As I was looking through my social media today, I counted how many of the past years I have thrown on scrubs and dressed up on Halloween as my alter ego: Meredith Grey. Since I created my personal Facebook page in 2008, I have dressed in scrubs 6 out of the last 9 years, with 2 other years as Alice (one was Evil Alice, inspired by Warehouse 13), and one year I was Sarah Sanderson. (and if you don’t know who that is, get your booootay over to Amazon and order Hocus Pocus stat!!)
This year I am dressing up as an Arkham inspired Steampunk Harley Quinn. (I’ll post pix tomorrow! The girl child is doing my make up!)
So, onward to the final Black & White Photo for my series!
Merry Samhain! ❤ ~ Xun
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
In the US we’re watching tensions built with North Korea and current administration. News out of Washington always seems like we just never know what’s really going on.
There is a 30 foot inflatable chicken on the Ellipse near the White House. I’m only about an hour or so from this area and THIS is HILARIOUS! I dunno if you have a twitter or facebook, but if you do, do a quick search for “giant inflatable chicken” and enjoy the commentary!
Doesn’t matter which side of the aisle you’re on, this is FUNNY!
The Trojan Chicken!
“I don’t think Trump and North Korea should be playing chicken with nukes.”
You only elect the giant inflatable chicken once!
“Yesterday: Trump threatens North Korea with “fire and fury”, Today: We are LIVE covering the giant inflatable chicken on the South lawn of the WH.”
“Giant Inflatable Chicken 2020!”
Okay…..back to your day…..
There are a lot of moving pieces in my life. Like…..MY life isn’t moving, but there is a lot! of movement around me and a lot of change. And I get it. Life is change and movement, whether that might be forward, or backward, or temporary movement.
1. enrolled in the second part of her program, which means along with classes and papers, and reading, and.. and… and… (because it’s college), she’ll be starting her clinicals soon as well. She’s going through all this schooling to be a radiographer. I thought she was going for Xray tech, but this so much more. She kicking ass, so give her a thumbs up!
2. Her boyfriend of a year just dropped her without really any reason. Forget a good reason, it was shit and it was selfish and it broke her heart.
3. So on top of getting into the program, she quit her job to focus on school, and her boyfriend tells her “we’re not compatible”. W T F?!
4. And then her fish died today. She’s having a rough week.
My boy…well, not “boy”; 6 foot tall, 200 lbs (23 year old) man, but my only son and therefore still my boy is still plugging along at his training to be an electrician and he finishes in November. And he seems to like Northern California, so that’s all good stuff for him too.
But we are having a major shift in the house. My youngest has decided to go to the local public high school and get out there and meet teenagers and go do the high school experience. Which is awesome, don’t get me wrong, but she’s been homeschool since she was 6. I brought her home in 2009. We were just moving way too much at that point with the Navy closing NAS Brunswick, so I thought the better choice was to homeschool her under an accredited school to protect us, allow us to reach what she wants to learn, when she wants to learn and how she would learn. But it’s been 8 years now and she wants to start getting out into the world.
So, between random bouts of tears and panic attacks, I am getting the paperwork together to get this process started.
It just feel like a million things I’m directing traffic to, offering up time and whatever my girls need.
So if you need me, I’ll be hiding out in my blanket fort. With my tablet, my coloring book (and crayons), and maybe some snacks.
First an anecdote from yesterday: It was close to 100* F yesterday and my house is dual zoned climate controlled (I promise this is relevant). I keep it about 74F during the summer. (I try to save energy and all, but I already turn blue for no reason and we have like 20 solar panels on the roof.) I was down stairs for several hours and went upstairs to get the laundry and change clothes. As soon as I got to the top of the stairs, I noticed it was much warmer and felt kind of stuffy and humid. (Humid?? When you live on the Chesapeake?? Get out!! Okay, I’ll shut up and get on with the story…..)
I wandered into my room to check the Nest thing and it said that it was about 78F upstairs and had not been running. My first thought? “I wonder if the house thinks I’m not home because I had been hanging out in pretty much one spot downstairs.”
What? “My house thinks I’m not home??!!” Who thinks that?? Oh, right. Me. Because hubs built this house and wired it with all the goodies he wanted.
But still … WhoTF thinks “my house must think…..”??
- I got nominated for an award!! So I better get off my butt and work on that. And thank you, I am truly honored. I started this to write my way through the pain and uncertainty of chronic pain and illness and found friends and support and awesome stuff along the way!
- My youngest has decided after being homeschooled for 8 years (she did K, 1st, and 30 days of second grade in public school and I brought her home in 2009 at 6 years old y’all!) that she would like to transition to public school and get out in the world. So in between panic attacks I am trying to gather information for what I’ll need to register her, and working on transcripts.
Fortunately, she has been technically registered in a private school, to protect us and her from any local school districts and allow me the freedom to teach her what we want, how she wants, and keep transcripts, grades, and attendance records. So to the school it will be a lot like a student transferring in from out of state.
I have a list of requirements, I’ve let the head of our current school know, and I am gathering all the needed paperwork.
So now that much is done, and it’s Friday afternoon, I’m going to allow my anxiety (and occasional panic attacks) about it all to hit pause and go play the new season of Diablo 3.
(Also my oldest just got accepted to her chosen program for imaging tech and she’s super-psyched and focused and I am insanely proud of her. She’s focused and determined and working on a great program that is for HER , so please give the guy that just broke up with her a one fingered salute!)
Like I said…..changes.
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….