you gotta be kidding

The Depth and Breadth of Cripple Adventures

If you follow me on Twitter you may recognize my hashtag #CrippleAdventures, some of which I’ve blogged about in the past here. Since the snowboarding accident 4.5 years ago I’ve tried to keep the humor up about this crazy health situation. That effort’s just about run its course, especially now that it seems the trouble I’m having may be more serious than lingering neuropathy.

It is a bit too early to start jumping to conclusions about what exactly is underlying the symptoms, but I will tell you I’m afraid it’s something like MS or ALS. I’ve stumped three different primary care physicians, at least 4 specialists and their array of nurses and interns, countless X-ray, MRI, and CT scan technicians, and the guys at the Bacon Test clinic. All of the scans come back with perfectly normal results despite failing the reflex and strength tests and weird results on different nerve conduction studies. I’ve had 8 different operations to reconstruct my arms and treat the neuropathy, yet it continues to get worse. It’s not diabetes, cancer, a thyroid disorder, anemia, vitamin or hormone imbalance, a vascular disease, an STD, or pinched nerves. Nothing shows up except weird, verifiable symptoms that the tests should be able to explain but don’t.

When I left Nevada my surgeon’s advice was to wait and see if anything got worse, since improvement could take time. He was concerned that worsening symptoms would mean a neurological disorder since he’s done the latest treatments for the nerve damage I had. He recommended me to the Cleveland Clinic in Las Vegas, although they didn’t take my insurance and needed $$$ up front even for an evaluation.

So here we are, a year and a half stubbornly denying the worsening of my condition. The blindness and paralysis are back and frequent. So is the pain, the twitching, all in places and patterns that don’t make any sense. While all of this goes on I’m trying to keep my job, which has only gotten more complex and brought more demands and responsibilities while my physical and emotional resources have been long overdrawn.

I’m watching my career dead-end as we speak. With the promotion and changes in the business my role demanded I develop greater people skills and devote more time to orchestrating some changes and ensuring they come off without a hitch. There are days when I can’t move my legs, or even roll myself out of bed. Today I was reprimanded for being late last week, despite it being a direct result of the new medication I’m taking and partly exacerbated by an Outlook outage. Over the weekend I was called on for not anticipating another team dropping a piece of work and then not being able to take charge because I had no way to see the piece of work, much less take action on it. My work is being re-directed to others and my responsibilities are being pushed towards an avenue that leads straight off a cliff. The pessimist in me says I’m being set up for failure. I know there are plenty of logical conclusions and my boss(es) has/have been well-updated with my health concern over the last four years, but my gut smells something wrong.

All of the struggles happening in my body are having a huge impact on my life, despite being more or less invisible. The last 4.5 years have been spent trying to push through and get on with my life like normal to varying degrees, although I didn’t do it very well after surgery. 8 operations in a year and a half is a little rough though, so I’m not ashamed of all the help I’ve had to ask for. Thanks to Luke and Regina, Ben, Max and Jessi, Michelle, Amanda, Julie, Colleen, and the others who’ve been there to help me through.

I’ve been maxing out my physical credit, paying off the balances a little at a time, but never making any headway since I keep overdrafting. It’s tough maintaining credibility when you have to tell your boss you can’t do something because you can’t use your hand, you can’t walk, or you’ve suddenly gone blind. It’s embarrassing when you’re with your friends and suddenly can’t lift your fork, take off your coat, get something out of your purse, or your legs drag when you walk because you can’t really feel them. It’s demoralizing when this happens day after day and you still have to find a way to go to work, keep up a house, feed and clean yourself, and find the energy to be joyful and grateful to be alive. This is barely surviving, I wouldn’t really call it being “alive” most days.

Try going to a doctor’s appointment and having to list everything that’s wrong. Try asking for a new medication because the one you tried last didn’t do anything for the pain and you’re still not sleeping. What about when you can name all the narcotics you’ve taken and how each one does or doesn’t work, and then all the nerve drugs and muscle relaxers they recommend (even the expensive or experimental drugs), and then the other random anti-depressants or NSAIDs that they give in weird doses to help with things they’re not principally designed for? When you open a bottle and pray that you get SOMEthing to work, even it is just a placebo effect today because GOD DAMN I’d really like to be able to finish getting through my inbox and sending out all those reports and maybe washing dishes today? For a little while you’re motivated to prove to yourself that you can succeed and be productive despite the situation. After a while it only makes things worse.

My appointment with the neurologist is next week. Hopefully they’ll do a test where we see something and can start treating what’s wrong instead of throwing pills at it hoping I can find a way to be pain-free or at least sleep. I would love nothing more than not having to go to more doctor’s appointments, undergo more tests, become a specimen in a petri dish ever again. When I have to re-tell the story of the last 4.5 years the humanity of my struggle gets sucked right out for the price of a good story. I want to cry right now just anticipating the next visit.

In the short term I pray I can deal with the Cripple Adventures a little longer, for the sake of my career. Even if I can’t rescue this one I’ll be able to find another. Every single day in my body is a nightmare, though, and I can’t laugh about it anymore. Maybe in the future again, but not now.

Meanwhile, please consider that all the people who look “normal” might still have a personal struggle. Disability takes many different forms, whether you can see it or not. I don’t want pity, I’m already recriminating myself for not being able to push through by the sheer force of will and stubbornness. I just want to be able to get through the day without having to defend my limitations.

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Categories: crippled, disability, doctors, life lessons, you gotta be kidding | Tags: , , , | Leave a comment

Ambien: a Text Message Adventure

After last night, you should consider yourself lucky if I don’t have your phone number. Here are a few of the texts I woke to find having sent in my stupor:

 

“Ambien + Yelawolf = WTF Santa”

“My grilled cheese sandwich might have AIDS”

“I told the vampires to stay in the bathroom so I could sleep but they might not listen. You can shut the hall door.”

 

Since I spent the weekend not being able to sleep with the recurring neuropathy, yesterday afternoon I decided to take an Ambien in the hopes I’d be able to fall asleep after dinner and be well-rested for a bitch of a work week. I guess my body’s forgotten what drugs do this far after my last surgery.

 

Whoops!

Whoops!

 

The first time I took Ambien was after surgery, and the bathroom tiles were having a dance party around my feet. When I took a pill the next day I watched the words on my Kindle dance around and off the page. Most commonly, there would be alien vampires in the bathroom waiting in the tub for me to have to get up and pee. They never left the bathtub so I was fairly certain they weren’t real after the first time they appeared

Stone-cold sober, I’ve had super vivid dreams ever since I was a little girl, and have had the odd hallucination even in the middle of the day. (Yes, I know, it’s probably better that I get into the neurologist sooner than later) Add Ambien and opiates, and, well…

 

If you ever get weird texts from me about aliens or vampires, or maybe tiny pictures on my phone, please just convince me to go back to bed.

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Lil Bro’s Wedding – the Calm Before the Storm

It’s finally happening, Lil Bro is getting hitched this weekend. I wish I could say it’s against my better judgment (it’s not – I wouldn’t miss being there for Lil Bro for the world), I’m going to be spending a weekend surrounded by our family.

 

Alone.

 

Yes, I’m completely alone, without anyone accompanying me as a distraction, a babysitter, or a crutch.

WTF am I thinking???

 

Well, at first I wasn’t thinking – the first week or two after I got the invitation was a near-constant panic attack. Two months later, leaving Hicktown for the South, I was finally mentally and emotionally prepared for this… thing? I have no idea what to expect. It could be a circus, it could be fine – the only constant I know is that my mom will bring up the old drama, my dad will stonewall me and pretend to be nice, and even though I’m sitting at the family table for dinner I’m going to be the odd one out like all the other family events I’ve been to since I left home. My dad’s wife used to be known for leaving obscene voicemails and doing obscene drive-bys and my mom is known for telling every secret under the sun when she drinks, and then making up more… So who knows?

In the days before I left Hicktown I had a few bouts of anxiety, one of them pretty intense. Eventually I was able to articulate for myself that these crazy jerks don’t even know me so anything they might say to me or about me doesn’t even matter. The usual topics of conversation are just politics-baiting.
Seriously, the two insults I always hear are that I’m a “goddamn liberal” (only half-true, more like I think for myself which is actually pretty verboten on its own) and I’m a lesbian. No, dad, I’m not, but you’re the one who always starts that rumor. And even if I were a lesbian at least I’m not a child molester and don’t sleep with my relatives. Those two practices are actually commonplace in our family.

 

Since my vacation earlier this summer didn’t pan out, in the interest of mental health I took a few extra days off this week and am driving the long way around to stop in a few different cities. Last night I stayed in St Louis, which turned out to be surprisingly fun and relaxing. Road trips have always been me-time, but I met a friend and ended up laughing the night away. Today I slept in, had breakfast, started making my way through Tennessee to arrive in Carolina tomorrow afternoon. Blinding thunderstorms aside, driving was still therapeutic and I was in a groove.

…that is, until I was an hour east of Nashville and started panicking about how I’m going to spend Friday afternoon through Sunday afternoon surrounded by family. 48 hours of snide remarks, outright challenges, lies and changed history, new or distant relatives afraid to get to know me because of the inevitable retaliation or my mom being crazy. At my cousin’s wedding 10 years ago I thought I really was the problem until my dad’s wife’s mother told her she will come talk to me regardless of them “forbidding” her to talk to me. Knowing the background makes it easier for my rational mind to process, but under the layers of reason I paint on myself daily is still a scared little kid. Ashamed, afraid, and empty.

 

If you were on eastbound I-40 today and were almost sideswiped by a little black sedan, please let me apologise. Fucking panic attacks, man.

 

The lizard part of my brain that’s still a sad, lonely, scared kid keeps telling me all the likely scenarios I’ll encounter. The logical, Type A part of my brain keeps telling me to calm down, people make a big deal about shit that doesn’t matter, I’m an adult with a good life and I’m a good person, don’t engage, blah blah blah. It’s only working to the extent that I’m not having nightmares and have been able to function in the real world. Success…?

My hope is that I’ll have prepared for nothing. Second to that, maybe the rehearsing how to be calm and collected will kick in and I’ll be able to play the part without the lizard brain taking over.

 

And if that doesn’t work, I’ll just bust out the bruises on my leg and give them all something to talk about.

Categories: reflection, road trip, you gotta be kidding | Tags: , , , , | Leave a comment

The Cripple Adventures – Weekend Edition

Oh boy, do I have a full weekend planned. Blog posts, cupcakes, cleaning, hunting for dismembered wildlife in the backyard…

Once I can move and feel my extremities again. Well, even the non-extreme portions of my body. People are supposed to be able to feel their sides, right?

You guessed it, the neuropathy and paralysis are back. How am I typing this blog post, you ask? Very carefully, and I’m going to pay for it later. Oh well.

 

are-you-fucking-kidding-me

 

5 surgeries and 8 incisions later, the nerves are supposed to have been moved, decompressed, repaired enough for the damage to heal. After the last operation it seemed that not only had the right lower arm and hand calmed down finally, but the left arm had stopped screaming and I would be able to use my hand. I’ve had a nice two and a half months of minimal twitching and mainly only-recovery pain. Laugh along with me when I tell you it’s now come to an end. The twitches, stabbing pain, lobster claw, and paralysis aren’t as extreme as they used to be, but they’re back and I can’t hurdle them.

Harsh reality started to set in after not being able to move my legs or my left side yesterday while Miss J was making dinner.

 

paralyzed

 

While I will be seeing Dr Torture (that’s what his name sounds like, seriously) when I’m back in Vegas for work, there’s not much I can do to be a regular human again unless I’m willing to plow my way through the symptoms, the pain, the disability.

There will be baking, and I’ll let you know how my new low-sugar whipped frosting recipe turns out. I’ve got a post planned about how the incisions have healed, if anyone’s interested in how to deal with minimizing the look of scars. There are D&D sessions to plan, character prep to do, and maps to draw. The basement needs to be cleaned and I can’t be asking Miss J to clean up after me.

 

Let me be clear: I’m not asking for pity. I’ll be damned if I let this stupid injury steal any more time from me.

And if it turns out to be an underlying neurological disorder causing all of these problems, then I’m well on my way to coping with whatever degeneration awaits.

 

poke your eye out

 

 

In the meantime, let’s all have a good laugh!

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Shove Your Friday – the Squeaky Wheel part 1

I have a coworker who’s made me dread the work week more than I’ve ever dreaded going to work before. Not all of us are blessed enough to truly love our jobs, so even though I love coming to work I can appreciate that plenty other people don’t. I’ll try not to get too philosophical here since that leads straight to politics – no good.

Anyway.

I have a coworker who is obsessed with Friday. “Julia” has a special name for the days of the week and celebrates a weekly countdown to Friday. She greets anyone who passes by her desk based on the day’s relation to the weekend. (Thursday is “Friday Eve”, Wednesday is “Pre-Friday Eve” – I’m too busy on Tuesdays to remember what they are).

We’ve been here before.

I understand, if there’s a concert on Friday or you have a 3-day weekend then it’s normal to celebrate. If you’ve had a tough week and have accomplished something it’s natural to look forward to going home for the weekend, too. I could understand if it were a seasonal thing, like around tax time for accountants. I could understand if it were a monthly thing, like when I used to help prepare invoices and chew my nails to the bone to get our shipments out by deadline.

 

This is EVERY SINGLE WEEK.

 

From what I can tell Julia’s been with the company for many years and is good at what she does. Her manager comes down to chat for 10-15 minutes about nothing nearly every day so I can’t imagine there’s anything going wrong.  She’s typically very friendly and helpful – it’s not that I dislike her! Is this just a way to get attention?

It’s a very small thing, but this complaining itself is enough to make me want to go to HR and ask to be transferred to another part of the building, another floor, anywhere. Instead, I will ignore it and be glad that my office hours are much different from everyone else’s and do my best to avoid the constant weekday bashing.

Categories: Workaholic, you gotta be kidding | Tags: , | Leave a comment

The Teenage Microbiologist

I just found discarded foot band-aids on the coffee table.

The Ninja and I took Girl Cookie and her friend Paula Abdul to school this morning, after getting them breakfast. I was in a happy, family-type mood until I sat down on the couch and discovered another discarded science experiment on the coffee table.  The coffee table serves as a dining room table in this tiny apartment, so I found the discarded foot band-aids where I normally work and drink coffee, next to napkins and a Wii controller.

Are all kids this nasty?

Image

I know I was a messy kid – I did laundry twice a month and never cleaned my room.  Most adolescents are just learning about hygiene and grooming, so I try not to be shocked when I find science experiments in the bathroom or growing in socks on the floor. I do know if I’d ever left a band-aid in a common area, though, I would have been grounded for at least two weeks.

I love the Girl Cookie, and in the interest of building family harmony I try to let some things slide. I know I’m an uptight person in general, so I try to compensate by being more chill than I want to in hopes that I’m reaching a happy middle point.

Image

Call me Fred.

But toe band-aids on the dinner table? And now that I think about it, GC and her friend had been sitting in the living room waiting for Ninja to drive them to school. Am I the only one this grossed out?!

I haven’t been this grossed-out in a long time.

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