My last post was about the insanity in my life and the new request for a c-spine MRI for Facet Injections. Update time.
Even though Tricare tried to derail the planned MRI by not letting me know ahead of time I needed an authorization because last year we switched from one major medical billing company to another, because government whatever, an awesome lady at the hospital billing department caught it, called me, called my referring doctors, and got the referral the day of the MRI.
Long story short, I was laying in an MRI machine Monday night listening to Blue Oyster Cult.
I got the disk before I left so my pain docs have the images tomorrow for the facet injections. If they happen.
I got the radiologist’s report today.
Because something popped up on my MRI. Because of course it did. I am the poster child for one-in-a-million. I figured a hip replacement at 34 years old was rare enough. Then I figured the inoperable brain tumor was rare enough.
But then we see this on the report…
It would appear I have something called a perineural cyst on the left side (because of course it’s the left side. It’s ALWAYS the left side!!) of T1-T2. More commonly known as Tarlov Cysts and more commonly found in the sacral spine.
So it would appear that I have some new tests and experiences ahead of me. There’s even a rare disease foundation for the Tarlov Cyst Disease research. As in 8-9% of the population: rare disease. I did what I always do and dove into research (and admittedly I have more reading to do, and I will probably reschedule my “routine” neurologist appointment since my next appointment isn’t until March 1) and it seems perineural cysts are under the “rare and genetic diseases” GARD and/or NORD national Organization for Rare Diseases . I’m nothing if not a research junkie.
I’m still processing. Clearly I have more to read and learn, and doctors to talk to.
BUT: they can’t tell me it’s “in my head”.
We had 2 people jump off the bridge this weekend! TWO in two days! Well, less than 24 hours actually, I think. Where I live, our local bridge is the tallest thing in 3 counties, so occasionally we have a jumper. I think I read in the 41-ish year history of the bridge, 14 people have jumped and succeeded in committing suicide, and 7 or so have jumped and survived. The last person to attempt a jump was stopped last summer by cars stopping in the middle of the bridge and people getting out of their cars to talk to the young man.
I should insert here that both of the people (a 20-something year old man on Saturday and an 18 year old girl at 2 am Sunday) survived the jump. They are, of course, in critical condition. Please pause and send some positive energy out into the world.
I understand what might drive someone to desperate actions. About 12 years ago I had a plan to jump off the very same bridge. It’s a long story, but the rest of it begins with the fact that I didn’t want my kids to have to say “my mom committed suicide….”, so I turned my life upside down and went a little crazy for about a year, but I came out the other side and started putting my life together. We all have dark days and tough times, so I’ll just wrap up this part of the story with…
Just find ONE thing. Doesn’t matter if it’s your kids, your cat, your spouse, or just needing to water your plant tomorrow. ONE thing, and reach out. Somebody cares, somebody loves you, somebody will talk to you or stay with you. One thing, one day, one minute, one more thing, keep holding on.
It’s hard to believe we’re only 22 days into a new year. It feels like a lot is changing. And in my little corner of the world I have some changes too. I’ve been pretty quiet lately, partly because I’m in the middle of a lot.
- My sister (in law) passed away 3 years ago now. January 19th was 3 years. I think I am finally learning how to live without her here. I miss her. I talk to her a lot. I hear her voice in my head telling me “Don’t be sad for ME, girl. *I* am off dancing with Bowie and Freddy Mercury!” I know. I miss you, Bren.
- I chipped two teeth in December, thereby forcing me to go to the dentist and deal with the damage from brain radiation. I had 4 fillings last week, and I still have a bit of dental work to get through. I still believe anyone that would choose to be a dentist must have some sadistic tendencies. How many serial killers have been dentists? Anybody know?
- In addition to being sore from fillings in my wisdom teeth, I seem to be the only person that can kick my ass. There was some kind of incident with trying to put a metal colander away. All I know is I have a black eye now.
And I cut my finger when I got in the show to wash my hair. Still haven’t figured that one out.
- Finally, I got the release from my neurologist to get shots in my C-spine again after 4 years so I have an appointment for an MRI next Monday for new films (it seems the last c-spine films I had was in 2015) and facet injections into c5 and c6 on Thursday, the 31st. These suck, but the nerves in both arms are making me a little crazy, so I hope it’s worth it.
Image borrowed from Google images.
In addition to my normal juggling of kid’s school, theatre, chorus (new this year), and now her orthodontist appointments, I have my pain, neuro, (now) dentist, and scheduling facet injections. If these are successful I can look at moving on to a facet denervation procedure. Oh fun. But if it works, it relieves a lot of pain in my neck.
It’s been busy. There are a lot of changes this year. Here’s to hoping we all make it through it!
Today I celebrate the fact that I had major surgery 11 years ago today and gained a shiny new all-metal hip and the ability to walk again. The story with my ortho is one of my favorite stories to tell…
This is my left hip one month before surgery. I had basically no hip socket and what we didn’t know then was that my soft tissue had been holding my femur in place….mostly. So when I tore the cartilage in my left hip in August of 2007, I ran out of time.
The beginning of my hip dysplasia actually doesn’t begin until I was almost 19 and just had my first child. I went to my doctor complaining that my hip hurt all the time and American Army medicine and the early 90’s meant that the geniuses in charge of my care did a “scanogram” (swear to God that’s what they told me) and determined that my left leg was 1 1\2 cm shorter than my right leg. Or my left knee was 1 1/2 cm higher than my right knee? They actually told me my left femur was shorter. Ya follow me? Yeah…anyway….
Skip to 2003 and I was still dealing with hip pain and now some spine issues and got a thorough check up after I had my youngest child. This time it was a Navy doctor in Florida that did an x-ray and then an MRI on my hip and told me I have hip dysplasia. Eventually I would need a total hip replacement and there wasn’t really much else they could do. At that point in my life (with a 6 month old baby, breast feeding, and at my heaviest weight), I got told to “lose as much weight as you can” by an incredibly competent and compassionate ortho doc. (sarcasm? you bet. I cried all the way home.)
I lost 50 pounds over the next 15 months and have pretty much kept most of it off since 2004. I gain 10 pounds here or lose it there and I am currently just 8 pounds heavier than my thinnest weight in 2007. I went through physical therapy twice and when I tore the cartilage in my hip I ran out of time. My doctors wanted to get me to 40 (never happened. I’m not letting go of my 30s without kicking and screaming, but that’s another blog). I made it to my 34th birthday. I also managed to wait long enough to have a new all metal hip resurfacing instead of the traditional hip replacements that up to that point lasted 10-15 years. The Birmingham Hip was FDA approved in August 2006, my surgery was in November 2007. I got incredibly lucky and happened to live in Michigan at the time where the #2 hip replacement specialist is.
My doctor had trained in Birmingham England where the surgery and hardware was created. I had seen 3 different ortho docs that year and was referred to my surgeon because I was a good candidate for the Birmingham and considered too young for a traditional hip replacement.
Just before my surgery.
My surgery went well and other than needing 2 blood transfusions I recovered well and spent the winter of 2007/2008 learning how to walk again. I only spent one week needing a walker. I was determined to not need a frickin walker so 7 days post-op I was able to walk with a cane. I mean, if you took my cane away from me I couldn’t go anywhere, but I walked with a cane just a week after surgery.
Fun fact: if you look closely, you can see the 22 staples I had.
My ortho surgeon made a point to come to the hospital the day after my surgery (this is why this is a good story) to tell me that he had done about 300 of these surgeries so far and my surgery was the only time he opened up my capsule surrounding my hip joint and my hip dislocated by itself! The soft tissue was literally the only thing keeping my hip in place up to that point. I should make a note that I actually walked into the OR that day.
By the end of February 2008 I could walk again without my cane and because I had such a kick ass physical therapist (pt nazi) I was in the best shape of my life.
11 years later I am still able to walk. The rule is, however, that you can get far or you can get fast. Either I can walk further or I can get somewhere quickly. You don’t get both. I have a cyst on my hip joint but it hasn’t progressed to me needing another surgery. And even though I tend to fall down the stairs like it’s my job, I haven’t managed to damage my new hip (knock on wood!).
So, here’s a martini today to kick ass technology!!
I re-watch Grey’s Anatomy on Netflix. Over and over. It’s like comfort food for my soul and every time I watch another run through of all (now) 14 seasons, I find something else to hold onto, something else to relate to…..or occasionally, a lot like this week, something to connect to.
It’s been a tough week. Hell, I always feel like I could pick a point in time and say “it’s been a bit of a rough ____.” (And on the other side of the coin, I could simply pick a point in time and just be grateful…I know.)
The story of this week in particular starts last weekend. We chose last Saturday to make the second of our annual pilgrimages to the 16th century… AKA we try to go to our state’s Renn Fest at least twice during the season. A handful of times through the years we’ve managed to go more than once or twice, but two trips is our goal. There are nine weekends in the “Faire Season”, and we always go on opening weekend because it typically falls on or very close to my oldest daughter’s birthday, so somehow in the last dozen years or so we have created a family tradition of going to opening weekend at RennFest as part of K’s birthday. Our second trip is usually near the first weekend in October.
So we decided to go last weekend, and even though I love going, I also know I *will* physically pay for it in the following days. It’s a lot…a lot of people, and socializing, and walking, and being dressed up in full garb (dressing clue: boots then corset!!). It’s just a lot, so at the very least I am going to be extremely tired and sore (I once bruised my ribs from my corset). I have, in previous years, ended up in the ER at 2 am from a migraine, and the accompanying dehydration and exhaustion. I made the mistake of going too soon after radiation treatment and again ended up in the ER because my potassium levels were stupid low.
Anyway, the point I’m getting to is that we decided to go last Saturday, so Sunday I was (predictably) very tired and sore, but certainly in much better shape than previous years.
Until I woke up on Wednesday knowing the coming storm of a menstrual migraine was on its way. I have …typically 2-4 days… a month that a migraine can take me down, or if I can’t fight it back hard enough and it gets too far out in front of me, it’s off to the ER. But I haven’t had to resort to an ER visit in well over a year.
I spent Wednesday fighting, pushing meds and fluids. Lots of meds. Beating down the pain, refusing the nausea. I spent the afternoon laying on the couch with my favorite blanket, and finally ended up taking a higher dose of my pain meds and migraine meds and wandered up to bed early. Pulled the covers over my head and just tried to sleep so I could get away from the pain and nausea.
I woke up Thursday feeling a little better. I still wasn’t up to functional, but I was upright, eating, back on a mostly regular schedule of my meds, back off Imitrex, and doing 75%ish in life.
Except as I was settling into bed Thursday night, my *dh finally realizes I have been dealing with a lot for the prior 48 hours. After 2 days of me fighting from my soul to keep me out of the hospital, he decides to actually LOOK AT me and saw the cost of 2 days. I was really pale, my random black eye on my left eye swung in for a visit. Basically I look like I have been fighting….something.
I just looked at him…..
2 days. Two DAYS. 48+hours TWO FLUFFING DAYS……
I feel like a ghost in my house. I have so much more to say…..so much….
but I’m disappearing…..
*dh= “darling” husband. Read it in whatever tone you feel would fit described sitch.
Holy timelines!! Has it really been a month since I last posted?! I knew I haven’t been writing much, but I didn’t realize it had been close to 5 weeks. Sorry, I’m alive. If you follow my Instagram or my blog’s Facebook page, you know I’m still posting. I just haven’t been writing lately. Anything really. I’m barely even journaling much right now…
Since my last post, I’ve made one of our annual pilgrimages to our state’s RennFest. Opening weekend usually falls on or about my oldest daughter’s birthday and my family is a bunch of nerds so we go every year for her birthday.
Yes, that’s me in full garb. It’s taken me 5 or 6 years (and I have a couple of outfits) but yep, we show up in head to toe 16th century clothing. We usually go at least twice. Once for opening weekend (for K’s birthday) and once in October, the first weekend if we can swing it, for our anniversary because we got married October 2nd.
My youngest child has started her sophomore year in high school. And my son came home after 3+ years. And my husband is currently working on possibly changing jobs if everything lines up well. It’s been a busy month!
I also saw my neurologist and pain docs. Neurologically I’m stable and she pushed my annual check-the-brain-tumor MRI in July, but I’ll probably have a scan in November or December because I’m mostly stable (and I haven’t choked in quite a while, knock-on-wood, #dysphasiaisabitch ) but if I get overwhelmed my ability to remember anything or put a sentence together goes out the window.
I saw my pain docs and talked to them about the pain in my right hand (inspired by Wendy’s info) and they agree it’s probably De Quervain’s tenosynovitis. She chose to treat it first with a brace and Flector patches (diclofenac, an NSAID). I am really, really dominantly right handed so I sleep with the brace on. But when I slept with the patches on my right wrist, I woke up feeling like I was having a hard time breathing. Turns out there are associated cardiac risks with Flector (and I’m allergic to aspirin) so that was axed. I tried Lidocaine patches too, but they actually seemed to make it worse. Fortunately the brace seems to be helping and my pain doc has decided to wait on injections or referrals. It feels like a slow process to treat something they can actually fix, but one thing at a time, right?
I also talked to my pain clinic about the possibility of medicinal cannabis or even just CBD oil. Because of the meds I’m already on (and even though my state is finally getting on board with cannabis options) I would only be “allowed” topical CBD oil with prior notice. Anything else would fall under a “transference of care” and I would not be allowed to continue my current meds and be transferred to a doctor in this state that issues licenses for cannabis. So….yes, we’re making progress. No, it’s not easy. No, it’s not really a good option for me right now. I wish they’d allow me more time to work with stepping down off some meds and onto others, but I didn’t get the impression that was an option yet.
Tomorrow is one of the annual Navy events we try to go to, so I get to get all dolled up and go to a (semi)formal event tomorrow night. Next week is my 19th wedding anniversary. My youngest is up to her eyeballs in chorus and theatre (which means I’m sort of up to my eyeballs in stuff, but the school musical isn’t until Spring so I’m not quite up to tech week insanity. (If you know what that means, you get it.)
So, yes I’m still here. Juggling monkeys and handling stuff. Gentle hugs and hope you guys are good!
So, in the six weeks I haven’t sat down to share with the group, there’s been a lot of crazy stuff (see previous post) and a lot of really awesome stuff. And… well, really just A LOT.
I went over the big, hard stuff already (and as I’m writing this, everything hurts and I’m really sore for some bizarre reason today), but I have some insanely cool stuff to share too!
(consulting calendar & notes)…
so…in addition to the stuff that put us on the national news in the last 2 months, we’ve had a bunch of good stuff and busy stuff and…well, I’ll just try to get on with it shall I?
My youngest got the chance to go on a school trip to New York City in March! They got on the bus at beforeGodgotup o’clock on March 23…
The theatre group spent the weekend in NYC and got to see Waitress, Hello, Dolly! and Kinky Boots! They also had a workshop on stage combat techniques, visited Central park, Times Square, and Little Italy. It was a crazy whirlwind weekend and I am so grateful that the school got to pull it off and we could send our kid to do it!
My husband was sent out of the country on a work trip in March so I was juggling school shooting news, kid trip, and a snowstorm by myself for a bit. Oh! And updates with pain doc and neuro. I’m stable (mostly) and getting blood drawn this week to check cobalt and chromium levels before I see ortho surgeon again on May 22. In the midst of the insanity of the last 2 months, at least medically I’m stable and managing.
The most interesting things lately are just the dysphasia occasionally deciding it wants to flare (but I’m learning to manage it…did you know if you tuck your chin it helps when swallowing?) and my hip pops occasionally but I haven’t fallen and I am stable when walking. My rule is “I can go far or I can go fast … pick one”.
But medically, at least, I’m not very interesting lately. For now.
The best and coolest thing this year is I got to go see P!nk!!! This was bucket-list stuff and she is one of my favorite people on the planet. I even have lyrics from one of her songs as a tattoo…
I got to take my daughters and see her April 17th in DC…
It was amazing and she’s incredible! She opened the show hanging from the chandelier!!
I tried to remember the songs she did…
Get the Party Started
Just Like a Pill
Revenge (which included a giant inflatable Eminem)
Just a Girl (No Doubt cover)/Funhouse
Teen Spirit (Nirvana cover)
Just Give me a Reason
I’m Not Dead
Just like Fire
…which was INCREDIBLE!! We were close enough to feel the heat from the fire effects…
What About Us
Perfect (see previously mentioned tat)
Raise Your Glass
she literally flew across the entire arena!!
and she finished with Glitter in the Air.
It was an amazing show and the best concert I’ve ever been to and how much do I love the fact that my youngest’s first concert was P!nk??!!
April has been insanely busy, 4 solid weeks of rehearsals, tech week (aka: parents bringing in food and doing set builds because the kids are working until 8 pm), the kiddo’s first major high school musical production, prom, P!nk’s concert, and the opening of Infinity War because we’re a household of Marvel geeks.
Looks like I need to actually write up a third update!
I have literally been meaning to write an update for over 2 weeks, and then I got a comment giving me the “hey, you good? you needa post” and I realized how unbelievably overdue I have been for blogging. I’ve been working on a post in my head for the last 10 days (ish), but it seems I don’t have Jarvis to translate that noise into an actual post. Who knew?!
So….um, where to start? My last post was me losing my ish over a school shooting here in our little rural we-have-Amish-buggies-sharing-our-roads and it brought everything up close and in my face.
That was immediately followed by the National Marches…
…and a lot of noise and conflict across the country. I know people on both sides of the debate and having spent the last 4 years or so teaching my kid American History I understand the need for debating this issue. But then…
Just 3 weeks after the March for Our Lives (March 24, 2018) an 8 YEAR OLD was arrested for bring a loaded handgun to school on April 18, 2018. IN MY COUNTY. In my little corner of rural small-town America. And I lost my shit.
THREE gun events in our little county. In. ONE. School. Year. so far.
That is not okay. I am not okay.
The first one: two students being arrested for threatening to shoot up the school MY kid goes to just 2 days after the Parkland shooting. They were heard and reported and it was stopped, but how terrifying is that?!
The second one: The shooting at Great Hills High School. That affected us up close. There’s only three high schools in our county. 1400+ kids were evacuated from GMHS to LHS for reunification. Jaelynn Willey’s loss affected us all. We’re a small community and the shooting was an unimaginable shock.
The third one: an 8-year-old being arrested for bringing a loaded handgun to school. A third grader. Both parents are active-duty military. A girl on his bus saw it and reported it.
The kids are being told over and over and over again “See something, say something” and they did and it stopped two tragedies this school year. But it is breaking my heart. We’re scared. We’re frustrated. This is insane.
February 16, 2018
March 20, 2018 (Jaelynn was taken off life support on 3/22/18)
April 18, 2018
These are the dates that affect us right here in my town. This is a nation-wide debate but right now it’s up close and in my face and I can’t breathe and I don’t know what to do.
In the last month I’ve also had a lot of really awesome stuff keeping me busy and I’m going to write up a part two to the updates and try to get that published tomorrow. But it’s been busy and crazy and hard stuff is in my face and this hurts and whattheHELL?!!!
Yes, there’s lots of good things and experiences I’m going to share. Yes, we have been lucky and my child is safe but I’m processing.
More updates being written and I promise they’re the good stuff!
❤ ~ X
I always said the one thing I got out of college (besides a degree and being the first woman in my family in 4 generations to go to college) was a birth order theory. I was a Psych major, which if you know me is kind of ridiculous because psychology is waaayyy too subjective for me.
I have discovered I am a really, really objective kind of girl. I like things to be true, and proveable, and empirical.
But somehow I failed algebra twice, I have a psych degree, I’m a writer, and I believe psychology is good for understanding birth order theory. And I have emerging observations about the generations in addition to birth order.
I’m Gen X. Born in the first half of the 70’s so I’m pretty sure that puts me squarely in Generation X. My parents being 20+ years older than me puts them in the Baby Boomer Generation. I had kids young and then, for several reasons I have touched on in previous blogs, I have a 10 year age gap between my oldest and youngest child, which was just enough to put them in millenials (kid 1 and 2) and almost Gen Z (youngest).
I am also an only child. Something that seems to be less common in my generation. But then I went on to have 3 children of my own. So when I started studying birth order in my second year of college, I found it really interesting. And, observing my own behaviors, my husband’s (he’s an oldest), and my three kids; I found a part of the abstract, subjective major I had chosen that made more sense to me. I always say in the unlikely event I ever go back to studying Psych I would focus on birth order.
One of the most interesting things to add, for me, is also throwing in the generational changes.
(I haven’t been blogging a lot, so I thought I’d share some of the noise in my head since health-wise I am mostly stable right now. Post MRSA, stable brain tumor, managed pain, waiting til June for more all-metal hip implant related tests. But I’m a writer, and it’s always noisy in here, even if most of it just ends up in my journals. So the birth order thing is a subject I find interesting. And this is today’s noise in my head.)
And the world is crazy enough right now so I’ll skip the commentary.
I am a born in the 70’s Gen X’er, very (very!!) much an only child. It’s not a bad gig, but I always knew I wanted more than one child of my own because there’s a lot of social skills you don’t necessarily learn as an only. Throw in that we moved A LOT when I was a kid (5 elementary schools, 2 middle schools, and 3 high schools), and you have me. Red-headed rebel child, introvert, music lover, dancer, writer, weirdo.
My husband is an oldest. He has 2 younger brothers in an age spacing kind of close to our kids. I had my oldest kid early in adulthood, which is a blessing because I started showing symptoms in my 20’s, so if I had waited to have kids until my late 20’s or early 30’s I might not have more than one….or maybe any. I have 3 kids, but I have been pregnant 5 times.
Anyway, back to the story. My oldest is squarely in the millenials. My oldest two actually. Born in the first half of the 90’s (92 & 94), they are all millennial. My youngest wasn’t born until December 2002, so she’s more of a gen Z. It’s interesting to see not only the differences in who they are as oldest, middle, and youngest; but different in generations.
Did you know it’s not uncommon for onlys to marry oldests? The oldest is usually more independent and responsible. The middles are often peace-makers or entertainers. Youngests are more easy going and happier. Onlys have traits of both oldests and youngests. (I mean, it makes sense right?)
I am an only, and an introvert, and happy to spend plenty of time by myself. But my youngest is known to follow whoever’s home around the house and just like to be nearby. My oldest is responsible and (too)hard on herself sometimes. My middle has always tried to make us laugh and he’s an entertainer.
What do you think? Are you an only? Or a youngest? Do you see bits of yourself in some of these traits?
Side note: Friends of mine lost their daughter to brain cancer this last week. Please consider donating to Stand Up 2 Cancer or The American Brain Tumor Association. Both causes close to my heart . Or even just share my post or the pages for either organization.
Prayers, positive energy, love, hope, or strength are all gratefully accepted and I will pass them on to the family.
My heart hurts so much for them right now. I don’t have the words….
❤ ~ X