Updating again

I've been being bounced from specialist to specialist, having all sorts of tests done and leaving a lot of doctors scratching their heads. Today, FINALLY, after almost 3 months of looking for answers, I have some. I saw a neurologist again today, and he had the wisdom to call in the shoulder specialist (who was conveniently in the next room.) The shoulder guy knew what was wrong before he even walked in the door; apparently I am having a common yet uncommon side effect of the lymph node biopsy.

I definitely have nerve damage from the surgery, and it is possibly very severe. Some of the muscles in my shoulder girdle are simply not working at all (hence the lack of mobility), and others are in a world of pain and tension from the damage (hence the pain.) I may end up with nerve exploration surgery and possibly tendon grafts (hugely major shoulder nerve reconstruction stuff) at the Cleveland Clinic or another big medical center in another city (very few surgeons do those types of surgery.) Right now I am on huge doses of prednisone for 2 weeks (hello, crazy!) and I have another electromyography (needles in the muscles again! How wonderful!) scheduled for the 30th. I see the shoulder specialist again on May 5 (right before I leave for Spirit) to see what the big picture and plan are.

I'm terrified and still in huge amounts of pain (the kind that makes you scream), but thrilled that someone finally knows what the hell is going on. The last week has been sheer hell in both pain and mobility; driving is really difficult and even getting dressed is a challenge.

I am trying to get merchandise sewn for Spirit of the Tribes - it isn't easy, but I am pretty much dead broke and about to start selling off my personal treasures. Not really sure how I am going to manage the luggage on the flight to Florida though! I will probably be limited to one suitcase since I can't actually carry/pull more than that. I plan to vend at Tribal Revolution, come hell or high water. I submitted my henna party for Pennsic, but other than those things I am keeping my schedule pretty open. Was hoping to vend at TribOriginal again but just can't afford any more deposits right now.

Update

Just a quick update, as using a computer still causes me serious pain...

The verdict on my gimpiness: nerve damage from the neck surgery, to the nerve that enervates my rotator cuff and shoulder. That would explain why I can't reach for things, and I can only raise my arm about 60 degrees out of a possible 140. And why the muscles are all in crazy-big knots that just won't quit. And why the pain sometimes makes me yell.

The pain is still ferocious. Sweet lady percocet is keeping me sane (and making me queasy, ugh) and physical therapy is quickly draining my savings. I was making some progress, then I was overworked on wednesday - and I found out why you shouldn't overwork a nerve injury. So I'm taking a few days off of the exercises, getting a massage monday, and trying to keep it together mentally.

Can it recover? That's the big question. I'm hoping for yes, obviously. I heard through the grapevine of someone with a similar experience, and she got full motion back; it took her six months though. I'm going a bit crazy (and pudgy) with no dance or yoga, and everything that I like or need to do causing me great pain. And I'm clearly not at tribalcon - I can barely pick up my purse, much less luggage or totes, and sewing is pretty much out of the question right now. I WILL be at Spirit, come hell or high water.

I got my Clovenshield medallion in the post (THANK YOU KEVIN!!!), and I have been grinning like a goon all afternoon. Nothing like a cleavage full of chaos to make your day!

What happened to Zimra?

You may have noticed that a certain Zimra has pretty much fallen off the face of the earth. Yeah, that's me.

I've spent pretty much the entire fall and winter dealing with a frightening case of swollen lymph nodes - a head and neck full of 'em - with no apparent cause. After much battling with insurance, visiting of doctors and more doctors and the finding of specialists, taking of drugs and having blood test after blood test, I am finally beginning to get some answers.

I don't have them all yet, and it will probably be another couple of weeks before I get the answer to the big question: Is it cancer? I have a family history of lymphatic cancer (my dad) so this is no small concern. Having finally gotten a CT scan that proved that, um, my head and neck are full of cervical adenopathies (dude, I totally knew that! That means swollen lymph nodes!) I am FINALLY having surgery this week to excise one of the nodes in my neck for biopsy, so this should give me a definitive answer on that subject. It's my first surgery and involves general anesthesia, so I'm pretty nervous.

I apologize for putting everything else in the world on hold. I've been pretty much living in terror since September, and was starting to look for youtube videos on how to excise your own lymph nodes. Fortunately my ENT specialist is also a very good neck surgeon, so I'll be going under his knife on Wednesday. Eep.

I'll update when I get some answers, and if it turns out to be that blessed, blessed "no" I will resume life, socializing, costuming, dancing, and even answering emails. For now I'm going back to my crazy world of fear and worry, and will return you to your regularly scheduled radio silence.

Hugs,
a somewhat lumpy Zimra

Spirit of the Tribes!!!

It's been a rough couple of months, between my collarbone and its medical bills (darn thing won't stay in joint!) and my cat and his medical bills (swollen throat/lymph glands/tonsils, possibly lymphoma. And he is now down to 4 teeth - canines only. He has trouble eating but he can still bite me when I pill him!) So things have not been the greatest chez Zimra.

But I will be at Spirit!! Can't afford any workshops or even the shows at this point, but hopefully that will change. I'm hoping to see many of you guys there! Please stop and visit at my booth (I think I'm across the aisle from my usual spot this year - look for me near Lisa Wylie and Red/Tricia's Treasures) or find me at the pool! Can't wait for some pool and hot tub time with my peeps!

off to Tribalcon

I will be off to Atlanta in the morning for Tribalcon! Please stop by my booth and say hello - I'll be in the main room near the stage. And I will have CHOCOLATE!!! (As well as awesome new D-ring and ruffle belts (separately, not D-rings and ruffles together... yet!) and gorgeous and affordable new mini-skirts. Plus all the fringe you could want. So come by and say hi!)

Where's that ZImra been? And desperately seeking Spirit (of the Tribes)

Hi everybody! I've been to hell and back recently. I'm in the midst of a major run of insomnia, so bad that I have started to lose my grip on reality/sanity (okay, so maybe I never had so much of either to start with!) I've been trying the new drug Rozerem, and it has officially... made it WORSE! That's right, the most sleep I've had in a row has been 4 hours, tops, for the past month or so. So far I haven't gone on a killing spree or hallucinated (at least, not so I can tell) but it's been close. I'm ready to ditch all the drugs and just let my body do what it will.

On the more positive side, I have been getting up at 5 AM for yoga, because I'm usually up anyway.

On the less positive side, my odd shoulder injury from last year was just diagnosed as the result of a neuropathy from between C5 and C6 (that's my neck). I have a severely limited range of motion in my neck and considerable weakness as well, and my right shoulder is utterly wonkity (raised and pitched forward) with an odd looseness of the humerus in the socket. My neck position is probably what caused the shoulder injury. I'll be doing PT 3 times a week (at $30 a pop, ouch!) for a few weeks, then will be reassessed. There is scar tissue around my collarbone and they are going to break it up with massage. (Another ouch.)

So I am sore from being prodded and poked, but I look forward to getting my neck and shoulder set to rights. I can still practice yoga as much as I want, as long as I don't do things that hurt. I'll sit down with my Mysore teacher tomorrow so she can keep an eye on my neck alignment and other things.

And I held bakasana (crane or crow pose), prop-free, for almost 2 seconds last week! My arms were killing me afterward, but I am finally getting the hang of it. I will probably be falling on my face in the next week or two. I'm told it's the only way to get rid of the fear of falling on your face. :-)

And now for Spirit - I am so behind... anybody need a roommate and/or want to share a rental car? I can't rent a car this year because I don't carry my own insurance (I drive Kevin's car)... last year I bought the supplemental insurance with the rental and the whole thing cost me $500.

Happy and safe New Year's to you all!

I hope you all have a very safe and happy new year's!

I am very grateful for all my wonderful, open-minded, open-hearted, talented and funny and cooler-than-hell friends! I look forward to hanging with y'all at one event or another - hopefully soon!

heartbroken: Benazir Bhutto is dead

As I did my sun salutations this morning, Benazir Bhutto was assassinated. How utterly and devastatingly terrible.