crippled

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.

Categories: crippled, 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!

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

Wake and Bake

The need, it’s back – it’s taken over. Cakes, cookies, frosting…

Fucking baking.

 

Many, many moons ago my secret recipe cookies were mildly famous from Wisconsin to France. I started experimenting with cakes in college and, in certain circles, a party was only an excuse to make another cake. Fillings, chunks, frosting, fruit – you name it, I experimented with it. No half-assed sheet cakes for this domestic derelict, either. Imagine layer cakes, ganache topping – spending more money on your bakery budget than the rest of your food combined.

I invented CAKE PIE for God’s sake!

These were the parties.

 

After the accident it was necessary to stop many of my hobbies, of which baking was a particular challenge. I melted my hand trying to make nachos one evening because I twitched and ran my palm along the heating coil in the oven. This mishap was pre-injury so I knew better than to mess with an oven with two busted arms. Now that the recovery period is coming to a close, I decided to test the waters.

 

This batch of my secret cookies might be one of the best batches I’ve ever made. Period.

 

Oh goodness...

Oh goodness…

 

Next came a Final Four cake, in honor of the Wisconsin Badgers. Dark chocolate double layer cake with sour cream and raspberry filling, mixed with a little of the cream cheese frosting to help keep it together.

ON WISCONSIN

ON WISCONSIN

 

Miss J mentioned she had muffin pans that had never been used so I decided to try my hand at cupcakes. Meet my new love.

Blh4_RICQAALo1k

 

This is my third batch of cupcakes, the second batch just in the last week. I’m teaching myself how to decorate despite really, truly only liking the simple frosting spread you do with a butter knife. Next up? Low-sugar or sugar-free frosting. Once I’ve got the handle on that it’s time to learn to make the batter from scratch.

It's a start, for a cripple...

It’s a start, for a cripple…

 

Holy hell, I’ve found my favorite new hobby. Forget minion-mastering, forget demon-slaying, forget crocheting. The three year hiatus took its toll and now I’m making up for lost time.

 

Let’s see if my high-powered metabolism holds up, or if it finally crashes with all of this indulgence.

At the very least, it’s a good way to justify joining the gym this weekend.

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What Do I Want?

My friend Josh was telling me today about the girls he’s tried dating since the last time I talked to him this Fall and I started thinking about what I want in a partner. I’d gone through a self-discovery exercise about two years ago after the breakup with J and made a list of the qualities I want and need in a partner to be happy. Earlier this Summer/Fall I started thinking about this list and wondered if I needed to re-evaluate what I want in my life since it’s obviously changed in the last two years.

 

Yes, some of the things on my list have changed. Then I started wondering if I’m offering all the things to my partner that I need in order to not only be happy myself but be happy in a partnership. You get what you give and I know lately I’ve been cranky and dissatisfied – primarily with myself. It’s not pleasant. Is the unhappiness in my life just an extension of the unhappiness with myself?

 

My ideal partner is someone who is financially responsible (or at least has started planning for the future), self-motivated, an open communicator, someone with good hygiene and wants a commitment like marriage and a family. I would say that the ones I really fulfill are wanting a commitment and being self-motivated and more or less I’m financially responsible despite having less-than-desirable credit.

 

As much as I need to be with someone who can communicate their feelings to me openly I know that I’m a shitty communicator. I hate confrontation and I wait until I’m going crazy to bring something up. I grew up in a house where passive aggression was the norm and I still have problems with it. Half the time I don’t realize it until it’s too late but I know that I’m not good at having constructive discussions.

 

I’ll admit it, I’m not the best with personal  hygiene. For the moment it’s because I’ve got serious medical issues but it still disturbs me. It’s tough not only to bathe but also to clean up after myself. I try not to go around being filthy but it’s still something I’m very self-conscious about. Not being able to clean up after myself really is what makes me feel the worst.

 

Overall I’d say I’m pretty positive – life is good and I’m headed in a good direction. I know there are plenty of good things about me and the other people in my life but there’s no growth without looking at what makes up our lives and what makes us unhappy though. I’m committed to making the best life for me that I can and that includes becoming the best person I can.

Categories: character flaws, commitments, crippled, reflection | Leave a comment

The Frankenstein Chronicles – An Adventure in Referrals

My latest visit to my hand specialist (Dr. Frankenstein) on Tuesday was the perfect fodder for a post and I’m glad I waited a day and a half to write about it because it’s just getting more ridiculous. I swear to God.

If you follow me on Twitter, you’ll have noticed that I talk about my hands and #DontForgetTheCripple. Long story short, last January I had a nasty fall snowboarding and busted both my wrists/arms.

The bone is still broken, 2+ months later

After a few months the broken bone and sprain healed.  This last summer, though, the pain has come back and God only knows why.  I’ve tried creams, acupuncture, chiropractor, different massages, muscle relaxers, nerve drugs, steroids, injections, splints, and more. I’m at the point now where I can’t hold cups and I can’t dress myself again.

So, I had an appointment with Dr. Frankenstein a few weeks ago and I was supposed to get a referral to a different specialist because we have no idea what’s going on. She wasn’t sure if the new doctor would be able to help me, so she said she’d have the office get in touch with him and then they’d call me to make an appointment. She asked if I needed drugs and I said no, I’d decided to keep trying the horrifically expensive muscle relaxer/anti-inflammatory combo drug we’d started the week prior, even though it wasn’t working too well.

A week and a half goes by and I didn’t hear from her office or the new doctor. I tried calling once or twice, but since I work funny hours I never remembered during normal office hours. At that point the pain was on an 8.5 consistently and I was dropping cups of water and soda cans. The main assistant was out of the office so we didn’t know why I didn’t hear about the referral, but we made an appointment for their next opening.

6pm Tuesday rolls around and I plop myself into the doctor’s office. Mind you, I try to go to bed between 4 and 5pm, so I wasn’t in the best mood. 7:15p rolls around and I actually get to see the PA.  I tell her what’s going on and she starts quizzing me about my referral to the other specialist. Wait, what? I never got a call back, what do you mean I was supposed to be seeing this guy?!

Srsly!

I flipped my lid on Twitter. Half an hour later, I finally get to see my beautiful, brilliant Dr. Frankenstein.  She still has no idea what to do with me and I start crying because it’s late, I’m in pain, and I’ve wasted two weeks. Everything has to have healed in my arms from the fall by now, so I feel like a hypochondriac and she feels like an idiot.

We discuss referral options and she finds out I never saw the specialist she referred me to.  It turns out the referral guy’s office dropped the ball, and since Dr. F no longer has her office manager (who I hated anyway), things are falling apart a little while they try and replace her. She apologizes profusely and we make a plan for the next steps. Even though I hate drugs, we agree they’re best for me now so I can actually do things like shower, dress myself, and eat.

The next day, no call from the new specialist.  I call my doctor back on my way home and the PA sounds like she’s ready to kill the referral office.  Apparently I’m supposed to get “VIP treatment” and get in right away. I’m ready to go to bed (it’s 3pm) so I tell the PA if I don’t hear back by the next day I’ll call again.

Thursday rolls around and I make it to the pharmacy to pick up my drugs. The script’s been waiting for two days so all I have to do is waltz in and pay, right? Nope. There were conflicting instructions and they had to call the doctor to sort it out. I didn’t have time to wait, but the pharmacist said it would only take 15-20 minutes. I was ready to chew off my arms so I decided to wait.  45 minutes later, no drugs because the doctor’s office was busy.

Hoping for better news, I decide to call the referral specialist. The person who makes appointments is out to lunch so I have to leave a voicemail. Irritated, I call Dr. Frankenstein and leave another voicemail telling them that not only are the drugs effed up, I haven’t heard from the referral guy and had to leave a message.

They referral office calls back and the woman wants to call me back again because I’m on the bluetooth in my car. Eff you lady, it’s taken 3 weeks to get a call from you, I’m not letting you off the line without an appointment! After doubting her ability to understand time, I get an appointment for a week and a half away.

I’m beyond fed up. I have the drugs and technically I have an appointment, but there’s no way I’m trusting this new referral. I don’t care if he’s Einstein or Ghandi – my stubborn ass refuses to give him my business because his staff is incompetent and pathetic.  Dr. Frankenstein’s office is too busy to get through, but I’m hoping she can line up another one of my options early next week. She’s one of the few doctors I trust and sincerely respect, so I haven’t lost faith yet.

Categories: crippled | Tags: , | Leave a comment

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