My body is beautiful not despite my disability but because of it.

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I’m pretty pleased with my new ankle. I would love just a little bit more range of motion, as–if you watch closely–you can tell I’m slightly limited by my right ankle not being as flexible as my left. However, considering a year ago I was unable to belly dance at all, I’m more than happy with what I can do now!

Vatche: “Lat Hebbina”

Korn: “Coming Undone”

New Ankle + New Toes + New Metatarsals

Wow, I meant to update this blog months ago and just never got around to it…

So, the surgery ended up being far more complex than the surgeon expected. In addition to replacing my ankle, I also needed my toes straightened, because they were causing me a lot of pain and were completely curled. The entire surgery was supposed to take 2.5-3 hours, with the expectation that the ankle replacement would take the bulk of the time. The surgery ended up taking 5 hours, with my toes taking up the bulk of the time.

The same ended up being true of the recovery period.

First of all, after the surgery, I woke up to pins in my toes. Pins that had to stay there for a month. 10612893_10153129299951996_2572556976016980347_nAlso, I couldn’t bear any weight on my right foot for over a month. Let’s talk about the non-weight-bearing challenge first.

As you may recall, my left hip was supposed to be replaced back in 2011 in addition to my right hip, but this couldn’t be done because my left femur was too thin. This means that my left hip is just barely able to bear enough weight for me to walk, and it can do this because my right hip can now bear extra when I need to limp. As you also may know (or may not, I’m not sure this has been discussed on here), my left wrist was replaced in 2008 and has a hard weight limit restriction of no more than 10 pounds. This means that neither my left hip nor my left wrist could do any of the weight-bearing I needed to shift off my right foot during the one month following the surgery.

So, long story short, I made it through by using a travel chair, a knee scooter, and having a very good friend stay with me the first two weeks to help me when my husband was at work. In addition to protecting my new ankle, I had to be sure not to damage the hardware in my left wrist replacement *AND* had to make sure I didn’t damage my left hip enough to expedite that joint needing to be replaced.

10556439_10153118723831996_4209489590994101786_nI did somehow make it through that month without damaging anything. Long story short, my new right ankle is pretty fantastic. It doesn’t have as much range of motion as would be ideal for belly dancing, but it’s still slowly getting better, and I’m able to drive, walk, and belly dance again.

Now, on to my toes. Readers, if you’re considering toe surgery, I would discourage you from doing so unless it’s really completely unavoidable. My toes hurt more than my ankle for a good long time. I don’t regret the surgery because it was really and truly necessary, but it was a lot of pain and I’m not wholly satisfied with the results. They are straight, but don’t touch the ground, ever. This may be because my tendons may have shortened after my toes being curled up for most of my life. If this is the case, my toes will never touch the ground, meaning they will never bear weight. But they do hurt less now than they did before the surgery.

Overall, though, I am so much more functional than I was before the surgery. I’m hoping to make a new belly dance video in the next month or two.

Ankle Surgery Tomorrow

10391038_10153024833946996_7849389272224683071_n10559760_10153024833891996_1567834422388345863_nAs I mentioned in my last post, my right ankle has been a problem for a long time. Well, it progressed to the point where not only have I been unable to belly dance for several months, I am barely able to walk and unable to drive.

Tomorrow, I will be having two procedures done on my right foot: a total ankle replacement and a Weil’s osteotomy of the lesser metatarsals.

My surgeon, Dr. Stuart Miller, has said that most patients after this surgery only need to go one month with no weight-bearing on the new joint. Not only will I need to make sure to protect the new joint, I’ll also need to baby my left wrist (which can’t bear any weight) and my left hip (which is already damaged from my JRA). To accomplish this, I’ve purchased a knee scooter, which I’ve tested around the house and have discovered I can use it in two ways: the way it’s intended; and I can also sit on it and push it around with my left leg, which will give my left hip a chance to rest.

I’m hoping to be back to belly dancing sometime next year, but I know it’s going to be a long haul between now and then…

New Challenge

It’s now been over 2 years since my right hip was replaced, and my hips are both doing really well. What has not been doing well is my right ankle.

As I have Juvenile Rheumatoid Arthritis in all of my joints, I expect to need surgery on all of them at some point in my life, if I live long enough. Though my pediatric rheumatologist, parents, and physical and occupational therapists did all they could with the medications and treatments available at the time, there was just too much damage done. It’s just the way my body is. I’m no longer surprised when a joint “dies”. It’s not a question of “if”, just a question of “which one next”.

And my right ankle is working its way up that probability ladder very, very quickly. The problem is that ankle replacement surgery is nowhere as long-lasting or as effective as hip replacement surgery. And the recovery period is horrific: over two months of not being able to bear any weight at all on that ankle. How the rest of my body will fare during that recovery period is a real concern. Add to that one of my cats getting old and needing a lot of care, and the reality is that, no matter what, I can’t get this surgery done right now.

So, what do I do in the meantime? I learn how to minimize ankle use, to protect that weak joint for as long as possible without straining my left hip or my knees. I’m altering the way I walk to use smaller, more frequent steps and am maintaining a pelvic tilt while walking to move the joint movement from my ankles to my hips.

And I’m changing the way I belly dance, because being on my feet now for half an hour at a time is no longer an activity that’s worth the pain. Lifting my right foot up to do hip lifts and hip drops hurts that ankle, so I’m keeping my feet flat on the floor at all times. I’m not walking at all. I’m standing in one place, in front of my bedroom mirror, for about 10 minutes, and focusing on really making my belly dance moves very, very precise. I’ve found I can, in fact, make the same movements used for hip lifts and hip drops with my feet flat on the floor. The moves don’t look much like hip lifts or hip drops, but it’s enough to retain the muscle memory. My biggest challenge right now are vertical hip figure 8s. Doing these with feet flat on the floor requires a lot of ankle flexibility that I just don’t have right now, and lifting my feet up to do them normally is too hard on my ankle, too. I’m trying to do what I can with that move, but I suspect I may have to find a way to do it while lying down in bed or something. It’s just not working well standing up with my new challenge.

But I am still dancing, and that’s what counts right now.

Videos

Quick updates before the videos:

  • The cortisone injection in my left hip was completely ineffective.
  • My right hip stamina and muscle strength seems to be back to what it was pre-surgery.
  • I’m still unable to put on my right sock, though I am starting to be able to take off that sock.

First video: Vivaldi’s “Winter”.

I was originally planning this to be choreographed and involve veil work, but I underestimated how long that would take. This is an improvised dance, though I have danced to this song before.

My thoughts:

  • First, it’s nice to see that I have improved since my last video… especially my undulations. Also nice to see that my right hip doesn’t noticeably move differently than my left.
  • Things I need to work on: for performances, I need to turn more so the audience isn’t always seeing the same side of me; I need to smile more; my arm work needs to improve (fluidity can’t improve much more, but I need a better understanding of framing and how to use my arms more effectively).

Second video: “Cakkidi” belly dance-hip hop fusion

With this video, I was trying to incorporate some of the hip hop moves I’ve learned from working with Anasma’s “Liquid Fusion” DVD. Moves to watch for: 3D figure 8, arm “pops”, arm waving.

And just to compare, here’s a video I made back in February: Mariam Matossian’s “Partridge”.

“Winter”

My stamina seems to be returning, for which I am grateful! I just managed to belly dance for 21 minutes, including 5 minutes of warm-up. This is comparable to what I was able to do before the surgery (and before I became unable to belly dance). Doing anything on my feet for longer than 25 minutes almost always results in foot pain, so I am pretty much back to normal with belly dancing. I’m also back to normal in terms of the amount of layering I can do.

To celebrate, I’ve made a decision:

By the end of November, I will make a belly dance video to Vivaldi’s “Winter”.

Why Vivaldi’s “Winter” and not something more traditional? First, because Vivaldi’s “Winter” speaks to my soul more than perhaps any other piece of music I’ve ever heard. Being able to belly dance to music that’s so meaningful to me is a really powerful experience. Second, because it’s a long song, so it will be more challenging to create a cohesive dance than it would be for the average Lebanese pop songs I otherwise dance to, which tend to be 3-5 minutes long. And third, because it has 3 distinct sections, which allow me to really vary the kind of dancing I’m doing.

In other recovery news, I am still unable to bend down enough to put on my right sock. I can, however, now bend down enough to take off my right sock, which is an improvement. I admit to being a little disappointed that it’s taking so long for me to recover my ability to bend all the way, but at least it’s not having a significant impact on my daily life (thanks to my wonderful husband, who’s become a pro at putting on my socks!).

I am also still having constant pain in my right hip, though this pain is at a tolerable level and significantly less than before the surgery.

About my left hip, I am skeptical that the cortisone injection did anything. If it did, I’ve yet to be able to notice. I’m still optimistic that I won’t need that surgery until February at the earliest and probably not until June 2012.

Update

Wow, I didn’t mean to go so long without posting an update on here.

The truth is that the progress I’ve been making since my last post hasn”t been quite as noticeable as the progress I was making in, say, the first couple of weeks after the surgery. There has been progress, but it’s been more of the “slow and steady” variety than the “leaps and bounds” kind.

In any case, here are some of the noticeable signs of progress over the last few weeks:

  • I can, as of mid-last week (9.5 weeks post-op), sleep on my right side;
  • I’m able to belly dance for about 13 minutes (including 5 minutes warm-up);
  • I’m able to walk as much as needed without pain in my right hip (though not without pain in my left);
  • Step over the ledge into our bathtub with minimal assistance.

What I’m still not able to do:

  • Bend down enough to put on my right sock;
  • Kneel on the ground for more than a brief period (though this is an activity I’d be limited in anyways because of my left knee and hip).

Next Tuesday, I’m getting a cortisone injection in my left hip joint, to try to alleviate that pain. If it’s successful, I may be able to put off that surgery for 6 months to a year longer, which would give me more time to break in my new hip and recover my stamina and muscle strength.

My stamina and muscle strength are definitely improving, but it’s taking time. I’m really getting excited to see what my right hip will be like when it’s fully recovered. I’m finally starting to be able to really use it, and I’m enjoying it.

Progress

Today I didn’t have any trouble keeping my right hip even with my left in standard belly dancing posture. It also didn’t feel as tight in the front as it has in the past. I’m pleased that the stretches, scar massage, and belly dancing have made such a difference so quickly.

Tomorrow, I will return to belly dancing in the main room, which has a nice oriental carpet (compared to the hard bamboo flooring in the bedroom, where I’ve been dancing this week) and a better sound system. I don’t feel confident enough yet to return to working with DVDs, but I’m hopeful that my right hip will loosen up enough in the next few weeks to return to working with DVDs (I’m more likely to push myself and over-do when I’m working with a DVD). In the meantime, I will continue dancing to music.

 

Back to Belly Dancing!

I had my final post-op appointment with the surgeon on Tuesday. Not only am I now able to drive, I am now able to belly dance! (And this will, of course, inevitably lead to belly dancing while driving.)

Even though I was exhausted when I arrived home Tuesday, I couldn’t help trying out belly dancing… real belly dancing, with music! Here is what I jotted down immediately after:

My muscle memory is still good; it seems I don’t really have to relearn how to do anything. My right hip is very tight in the front, which does affect how well I can maintain proper posture, and I feel a bit unsteady putting my weight on my right leg, as when doing left hip lifts and drops.

But overall: muscle memory is still there, my right hip definitely HASN’T lost any range of motion (the stiffness in front aside), all I lack now is muscle strength and aerobic stamina.

And those will come back with time.

I am still hopeful my ability to belly dance will completely return, but I have to admit that it’s frustrating to be only able to dance for 10 minutes or less. It feels like I’m just starting to get into it when I have to stop. My shimmies are nowhere near as powerful as they used to be. Both legs–not just my right–are weak. My right hip is very tight in the front from scar tissue and muscles that haven’t been adequately stretched for weeks; this results in my right hip being higher than my left when both feet are flat on the ground and I begin to enter belly dance posture. Happily, I’m able to correct this when I see it, but I will need to continue dancing in front of a mirror for a while until this correction happens automatically.

As far as specific moves go, I seem able to do everything I was able to do prior to the surgery, though not quite as fluidly. Moves that seem especially beneficial for me to do right now, in that they give me a nice stretch in the front of my right hip, are: outward vertical figure 8s, horizontal small & big hip circles (the “butt swipe” kind), omi’s, and pelvic lifts and drops.

One concern I do have that’s not directly related to my surgery is that my left knee seems to begin hurting faster than it used to. I’m attributing this to muscle weakness, in that since my muscles aren’t as strong as they once were, my knees aren’t being as supported as they’re used to. I’m hoping this will improve with time and practice. In the meantime, I’m stopping belly dancing as soon as my knees start hurting.

I’m hoping to post a video of me belly dancing sometime soon, so you can see how my right hip is moving at this point in my recovery, and so I’ll have a visual reminder of how my hip is right now. I’ve been pondering doing 2 choreographed dances when I’m fully recovered and my muscle strength and stamina have returned. The 2 songs I’m considering dancing to are “Winter” by Vivaldi and “Hizzi Dalli Hizzi [Move and Continue to Move]” by Emad Sayyeh.

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