Wrinkle

It looks like my Juvenile Rheumatoid Arthritis is flaring, flaring in a way it hasn’t for a long, long time. My C-Reactive Protein level was 9.4 (normal tops at 4ish) and I just woke up at 11:45 today and am completely exhausted. Unfortunately, because of my surgery in 10 days, I can only take 15mg of Prednisone for my JRA and can’t take my normal meds (Cimzia and daily NSAIDs) until the surgeon says I can… which may not be for 4 weeks after my surgery.

Under the circumstances, I’m not sure I should continue my seated belly dancing. I would have, at most, 3 more sessions prior to my surgery.

I will be taking things day by day and if I have enough energy one day, I’ll do it.

Cleared for Surgery

I’ve been officially cleared for surgery. In 13 days, I will be getting my new hips!

T – 14 Days

2 weeks to go to my surgery. I am seeing my primary care doctor tomorrow for the pre-op physical and history, which should *fingers crossed* be the final appointment for me to be approved for surgery. If there is nothing unusual with my blood-test results that my primary care doctor will require me to see a specialist about.

While I am not perhaps as muscular as I was hoping for by this point, I’ve also managed to avoid hurting myself, so I’m pretty satisfied overall. Belly dancing while seated seems to be working; in particular, it seems to be really working my quads and glutes, in addition to the normal muscles that are worked while belly dancing in any position. But I did discover today that there are some moves I should not do, even while seated. Unfortunately, one of these is one of my favorite moves to do: vertical hip figure 8s. It seems that any single-hip-based vertical and horizontal component movement (such as vertical hip figure 8s or hip lifts or drops done in different positions [in versus out, front versus back, etc.]) will cause an increase in right hip pain. Disappointing, but it’s to be expected: as my hips worsen, I will be less and less able to belly dance, even while seated.

All I can do is keep trying and respect my body’s new limits as they develop.

That being said, I am very much looking forward to getting my new hips.

Seated Belly Dancing Update

I think I’m finally starting to get the hang of belly dancing while sitting down. The first few times I attempted it, I wasn’t able to figure out how to translate standing belly dancing posture to seated belly dancing posture; thus, I would hurt my lower back or my stomach. Today, I realized it’s exactly the same as when standing (pulling pelvis upward, soft knees, chest lifted, shoulders back); it’s just that lifting the pelvis when seated feels awkward and takes some getting used to. But figuring this out will allow me to belly dance while seated without pulling a back or stomach muscle.

Today’s session was very productive and lasted 26.5 minutes, longer than I’ve been able to belly dance (seated or standing) since early June. Though horizontal hip movements (ironically, including the ones I could still do while standing, such as horizontal figure 8s) are tricky while seated, and reverse undulations seem next to impossible, I’ve figured out how to do hip lifts and hip drops. These are actually good to do while seated if you’re having difficulty telling them apart. A hip lift while seated will lift your hip off the chair (note that you’ll need to use your glutes for this, as opposed to standing hip lifts which don’t require as much work from your butt) while a hip drop will push your butt on that side into the seat (and consequently, your opposite hip will lift slightly). Shimmying is surprisingly easy to do while seated and is, of course, a great way to burn calories and practice layering. Another technique benefit I’m finding from being forced to belly dance while seated is that I’m really having to master arm movements. This has always been a challenge for me, so I think going through this period of seated belly dancing may end up being very good for me.

I was also able to work up quite a sweat and can tell that my arms, glutes, quads, abs, and shoulder muscles are being strengthened.

But one of the coolest things I’ve found about belly dancing while seated is that it frees me from having to worry about hurting my knees. Normally I’d have to stop belly dancing at 30 minutes because endorphins would kick in at that time and I wouldn’t be able to tell when my knees started hurting. So I’m thinking I may use belly dancing while seated in the future after standing belly dance sessions, so I can belly dance for longer than I would be able to if I were limited to standing belly dance. In other words, what I’m doing now will be useful for after I’m fully recovered from the surgery. This makes what I’m doing now a lot more meaningful.

And a lot more fun.

Pre-op Physical Therapy Evaluation & General Update

I had my pre-op PT evaluation on Wednesday. Overall, the appointment was very helpful: it reassured me that I was making the correct decision to go ahead with the surgery and helped me modify the post-op exercises to minimize other joint pain.

Wednesday was one of my best days in terms of pain in a while. Even so, I was only able to walk 180 feet, and that was with moderate-inching-toward-severe pain.

The range of motion measurements for my ankles and knees were surprisingly optimistic: I have close to normal ROM in those joints, which is a testament to the tenacity, skill, and perseverance of my physical therapists growing up. (I was not very cooperative with PT as a kid.) One notable abnormality was that both of my knees hyper-extend about 10 degrees.

As for range of motion measurements for my hips, it was as expected: not good. In particular, that motion where one lies flat on one’s stomach and lifts a leg up with a straight knee, I have about 1/4 normal range of motion there. The PT postulated that my knee hyper-extension could be my body’s attempt to make up for this lack of motion in my hips and that the cause of this was likely my dysplasia. He was very optimistic that I’d be in a lot less pain, more functional, and able to belly dance after recovering from the surgery. He also suggested that my knees and feet might start feeling better, too, after about a year. Because my soft tissue around my hips has adapted to the current range of motion, it will take some time for the soft tissue to stretch to allow me a more normal range of motion; but after that is accomplished, walking in particular should be much easier and I should have a more natural (i.e., balanced) gait.

One affirming moment for me came when the PT tested the strength of my leg muscles. This occurred after the walking/gait examination. The normal assumption is that when someone is as limited in walking as I am, that the leg muscles will be weak from dis-use. It was a delight for me to see the surprised expression on his face when he tested the strength of my hip muscles. My core strength is also strong. All in all, my muscles are strong enough to aid me in my recovery.

This is what belly dancing has done for me: allowed my leg muscles to stay strong when they should have atrophied.

The PT also showed me some exercises I can do with my arms to strengthen them as much as possible prior to the surgery. My arms are not in as good shape strength-wise as my legs are, and that needs to improve before my surgery… without injuring my elbows or shoulders. My plan is to do these isometric arm and leg exercises daily in the evenings after dinner while watching stuff on Netflix with my husband, as well as continuing exercises on the balance board as my ankles will tolerate it.

As a follow-up to the last entry, I belly danced while seated again today. It is in no way an adequate substitute for belly dancing standing up, but it is a better substitute than limiting myself to only 4 hip moves. I can approximate many hip movements while seated, though reverse undulations are challenging (but then I’ve always had trouble with reverse undulations). I am enjoying belly dancing along with my favorite belly dancers, like Sofia Sarkisyan and Isidora Bushkovski, without having to worry about injuring myself. It’s also a joy to be able to belly dance without my knees aching afterwards; normally, I’d need to sit down after belly dancing for at least 10 minutes because of knee pain. I may not be burning as many calories sitting as I would have a few months ago when I could belly dance “normally” for me, but I am certainly burning more than I was last week, when I could only do 4 hip moves. One wrinkle, though, is that it seems more difficult to keep my spine elongated while seated than while standing, and this gave me a cramp in my stomach today that caused me to stop belly dancing earlier than I would have otherwise. I think I just need to be more aware of keeping my spine elongated while performing seated-belly-dancing.

Overall, I am optimistic that I’ll be able to get my body as strong as possible without injuring myself before the surgery and that I should be able to return to belly dancing fairly soon after the surgery, though I’m expecting it may take some time to get used to my “new” hips.

Step Forward!

Sometimes, the answer is right under your butt.

Why can’t I  belly dance like I used to be able to?
Because I can’t bear as much weight with my hips as I used to be able to. It’s not a range of motion issue or a muscle issue, it’s a weight-bearing issue.

So… what’s the solution?
STOP BEARING WEIGHT WHILE BELLY DANCING!

And how does one do that?

By belly dancing while seated!

I’m happy to say that it works. Yeah, I look silly and I’m sure the bamboo flooring under my office chair is going to take a beating, but dancing along with my favorite belly dance videos on YouTube is so. much. fun. And I don’t have to worry about hurting myself, because I’m not bearing any weight. AND it’s definitely working the same hip muscles I used when belly dancing standing up–they’re tired after only 10 minutes!–so I should be able to gain some of that muscle strength back.

Best of all?

I should be able to do this right after surgery. As soon as I can sit, I can start working on belly dancing again.

But now, off to my pre-op PT evaluation…

Before…

As the surgery date looms closer, I’m reminded more and more how there really isn’t a “before” with my hips, not in the last 5 or so years.

But there is a more immediate “before”, one where I was able to–albeit not as well as others without my physical challenges–belly dance. One where I could, for example, do hip lifts and hip drops, or vertical hip figure 8s, or …

The two links that follow are videos I took of myself belly dancing back in February. At the time, I was experimenting with belly dancing to Mariam Matossian’s music. I was trying to keep my feet flat on the ground as much as possible and limit steps (my hips must have been beginning to hurt). In particular, I was experimenting with partial moves, such as doing one half of a horizontal hip figure 8 a few times before finishing it. Between February and mid-June, I changed tactics and had started working on Neon’s “Bellydance Rhythms Workout” and Anasma’s “Bellydance-Hip Hop: Liquid Fusion”.

Anyways, these two videos are the most recent ones I have and will have to suffice as representations of where I was prior to my surgery (these videos can’t be embedded, as I didn’t want people judging my bellydancing based on “normal” standards, so please click on the links below to view the videos):

Video 1 , Video 2

As for where I am now? I can’t do any step-based moves or moves that require uneven weight distribution (such as normal hip lifts and drops). I’ve managed 3 quasi-bellydancing sessions since last week. All upper-body based movements are okay (including normal undulations, reverse undulations I’m not certain of yet). As for hip movements, here’s the very short list: horizontal figure 8s (but not vertical), standard shimmy, front-to-back shimmy, hip drops with feet flat on the floor and evenly distanced (basically making the same movement required for normal hip drops, but without having the one foot raised and in front), hip lifts (same as hip drops). That’s pretty much it. Omi’s–for some reason I’m unaware of–seem to cause pain, which is disappointing and surprising. And I should mention that my leg muscles have already begun atrophying: the longest of this “bellydancing” I’ve been able to manage so far is 15 minutes.

Also… because I have to admit that it’s… just not very much fun to dance like this. I’ve been avoiding dancing to music because I’m worried I’ll get carried away and hurt myself, and it’s essential that I avoid that since I have such a limited time before my surgery.

I miss real bellydancing. I miss turning on music, warming up for 5 minutes, and being able to dance for another 25. I miss the challenge of matching my body to the music, of turning my body into a visual display of the music.

But I am determined to get it back.

I just don’t know how long this will take.

Introduction

Where to even begin…

As an infant, I developed an autoimmune joint disorder called Juvenile Rheumatoid Arthritis (JRA). Without the multitude of medicinal options currently available, the JRA ravaged my joints for the first 10 years of my life. During this period, my joints suffered irreversible joint damage, damage that has increased as I’ve grown older. While my JRA is currently controlled, the joint damage has slowly but surely worsened over the years. My first joint surgeries were on my wrists: my right wrist was fused in 2000 at age 18; my left wrist was replaced in 2008 at age 26.

The next joints that need to be replaced are my hips.

Over the last 5 years, I’ve been belly dancing for exercise.  It’s become very important to me: it lets me feel connected to my Armenian heritage, it’s made me more confident about my body’s appearance… Most of all, belly dancing feels like a celebration of my body. It’s also the only exercise I had been able to do on a consistent basis. Walking, swimming, Tai Chi… they all increased my pain after a while. Belly dancing–until last week–had, on the other hand, decreased my pain instead. In particular, belly dancing was essential for minimizing pain and discomfort from hip bursitis. But last week, this changed. Last week, belly dancing began to increase my hip pain.

Except it didn’t happen quite that suddenly.

A few months ago, my left hip began hurting. After a few months of limping and favoring my left leg, my right hip had enough: it revolted last week and has been attacking me with severe pain ever since–pain that’s resistant to medication, pain that keeps me awake at night, pain that can’t be ignored.

On Tuesday, I saw Dr. Marc Hungerford at Mercy Hospital (Hospital Page, Dr. Hungerford’s website) to discuss surgical options for my hips. We decided on a bilateral hip replacement (both hips done in one surgery) and that surgery is scheduled for August 8. He assured me that once I’m fully recovered from the surgery, I should be able to continue belly dancing.

Prior to the surgery, in addition to the standard pre-op exercises, I’ll also be doing some belly dance exercises. In particular, I’m going to focus on upper-body and core strength: lots of shoulder shimmies, chest circles, stomach flutters, belly rolls, undulations, etc. I’m also going to try to do hip movements that have balanced weight distribution and don’t require one leg bearing more weight than the other, such as: basic shimmy, horizontal figure 8s, horizontal pelvic circles, omi, twists. The hip movements will depend on what my right hip can tolerate, but I hope it will be able to tolerate some of these basic movements. I will be avoiding movements that are step-based, such as the 3/4 shimmy, or require uneven weight distribution, such as traditional hip lifts and drops. My basic rules will be: keep both feet flat on the floor at all times and STOP if pain increases.

I am hopeful that these belly dance exercises will increase the speed at which I’m able to return to belly dancing after the surgery. They should also aid in my recovery period: because of my left wrist replacement, I am unable to bear any amount of weight on that arm and my right arm’s not in ideal shape either. This means that core strength (stomach, back, shoulders) will be essential for my recovery.

Thanks for reading.