I’ve “formally” had SM for about 3 years now, but had spent the previous 10 years limping about with a cane and trying to find out why my left foot kept trying to tear itself apart. (The doctors kept telling me it was an injury common to Ballet dancers and skydivers - I just got out of bed one Saturday morning - no drama in that story!)

Thanks for the upbeat outlook - my spirits really needed a pick-me-up today!

I have recently started a FB support group for all sufferers of chronic pain and disability entitled REFUGE, at http://www.facebook.com/group.php?gid=120592401310050

I also manage a personal BLOG at: http://denicewhitaker.blogspot.com/ where I share bits and pieces of my experience of daily life with these challenges. Would love it if you’d check them out!
Thanks,
Denice

The last 2-1/2 weeks of Arthur Cat’s life, I remember deciding to hell with boundaries and discipline, I was going to bond all he wanted and spoil him rotten. Turned out he was impossible to spoil, as he was so self-assuredly goodnatured. He loved eating from my hand, and his first taste of liverwurst was a very good moment indeed!

Our very last morning cuddle (a daily routine) was so absolutely heavenly, words are beggared. He bounced up, climbed under the covers, and stretched himself aaaall the way out against my front — he had never done that before. His forelegs went past my face on the pillow with the super-soft fur tickling my cheek, his chest was tucked perfectly in the space between my arms, belly plastered to mine, back feet almost at my knees.

He grinned all over and purred and purred and purred; I was still dozy, and it felt like our minds were tumbling together happily in billowing waves of delight. I’ve never been so joyful with clothes on.

I’ll never regret, nor forget, deciding “to hell with anticipatory grieving!” and just savoring every drop of his company with real delight. It was wonderful, and looking back on it does me a world of good. He was … well, words fail. He was perfect, in his own original way.

As Shadow is, herself — prolific flatulence and all She’s an angel in rather whiffy form, so radiant with love and beauty that nothing seems that bad around her. Not even her breath.

Mabrouk awi, Shadow, on accumulating such an abundance of years. Mazeltov!

Seriously though, I just watched the movie version of RENT, and that message, of this moment, this here and now IS compelling and true and… everything. To hear you say the same thing just slays me (not literally like running a mile with you). Thank you.

PS I’m sitting in a cafe and I swear I’ve heard 6 cover songs— kind of like devil Muzak w/ singing. Is this how the endtimes play out? Please don’t tell me it is.

I forgot you and that I don’t know you well isn’t a reason.

I’m glad I found you again today. I saw Susan Skilling had a “status” note with your name against it on fb.

What can I give to you? What gift to I have that will help you on your way? My hand. My heart. I’m not going to forget again.

love
Sheila

A good reminder for me … I’ve embarked on an experiment, a course of therapeutic massage. It’s changing my world. The hope is a terrible thing, but I’m climbing back inside my body — while sternly fighting the constant urge to overuse it. Doesn’t leave me much, but the little I have is a lot more than I had. The emotional journey is strange beyond words.

Unfortunately, I have no easy answers, your bullet points — thus far based on my experience — are fairly accurate. Reading them thusly only seems to reinforce the trickiness of this whole thing. So much is not known about this condition we call syringomyelia.

As you’ve probably gathered, like yourself, I’m an athlete, and maybe, in some ways — though I don’t know for sure — that makes this whole thing seem more challenging. It seems to exaggerate the changes that are slowly taking place simply because we tend to be very in tune with our bodies in terms of charting our progress through workouts and athletic goals. Going backwards — on this “superficial” level — is not what we’re looking for over the short or long run.

But truthfully, athlete or not, these kinds of changes are difficult no matter what — nobody wants to deal with a degenerative condition — but where I want to shine some light, and in doing so reinforce the positive, is to say that because you’re an athlete your strength and ability to recover will be tremendous assets from here on out. It’s been true for me, even despite the apparent difficulties.

As far as any specific tips, I’d say this first and foremost; find a good neurosurgeon who is experienced with this sort of thing and don’t settle for one opinion on treatment — they do vary, even if slightly. Otherwise, I’m kind of winging it. I’m exercising as much as my body will allow — sometimes it’s painful, sometimes not as much — as I feel it’s important to keep my conditioning up. Is this the right thing to do? I don’t know, but it feels right. Pain-wise, well, I don’t really take pain medication — save some over-the-counter pain reliever from time to time — as I don’t like the side effects and don’t feel they really work.

I know you’re worried about your syrinx getting worse if you exercise, and as far as I’ve come to understand — from my research and speaking with doctors — there is no definitive answer on this one. As you read, I continued to ski and work out long after my diagnosis. Did it have an affect? Who knows? So go with your gut on this one, and pay close attention to how you feel. I’m definitely not an expert.

As you also read, at my December postsurgical follow-up, my syrinx is subtly smaller. That’s good. I have another MRI and follow-up in March, and the doctors said things are usually significantly better at that point. We’ll see. Either way, I don’t regret having surgery. It was tough, to be sure, but based on all I knew about my condition and what would likely happen in the future, I felt comfortable rolling the dice and going for it.

I hope whatever you decide to do — surgery or no — you feel comfortable with it and stay positive and strong. The journey and fight can be tough but it can be transcended.

And, please, don’t hesitate to contact me with any specific questions you might have… I’m more than happy to help where I can. Peace.