Thursday, February 11, 2010

Sorry I abandoned you!

This is me, 6 months out from a RPAO, at a theatre with my family to watch a short film trailer I acted in.
This is a picture of the trailer on the big screen! See the full thing at: Below, I am on stage, without a cane, and standing in heels (even though you can't see them!).

It is 7 months since my RPAO and 16 months since my LPAO. I am walking freely, and getting much stronger. My muscles are starting to fire when they're supposed to, and my stamina and endurance are getting better every day. Unfortunately, I still have a lot of uncomfortable pain in my lower back and tailbone area, that just does not seem to change, even through two PAOs and two years of physical therapy. I finally took steps to go to a spine doctor, and get an opinion about what may be going on back there. My hip surgeon always said it would go away once my hips were level and my gait normalized. I have been walking without a cane, with a small limp that has almost completely disappeared, for about 6 weeks now. The pain in my tailbone ranges from bad to worse, and never seems to be getting any better. I am so sick of feeling this way, every day, all day. It is physically and psychologically inhibiting my ability to move forward in life, because I don't have enough brain space to handle the immense pain, as well as the biggest question of WHY?????? What is it? Please, somebody help me!

I abandoned this blog, because I got very depressed. My original intention was to document the hardships, but to always look for the positive side of this experience as well. Because of the tumultuous nature of my recovery, and the numerous setbacks I had, I got pretty bummed out. My life has changed so very much from what it was two years ago, and now I am starting again from scratch. The world looks different through these new eyes and experiences I have had, and I don't have the same wild abandon and passion for living that I once had. I think about planning for the future, and food stamps, and about how I will keep my insurance through the unknown journey ahead of me.

I don't mean to discourage anyone from this procedure, as I believed it has helped me more than it has harmed me. I really didn't know what I was getting myself into, and now I just hope I don't have to live in pain until I can get a THR in 30 years. If anyone finds this blog, and needs a community for anything hip related, please, please PLEASE join Hip Chicks online community. It is an interactive community like FB, but strictly for hipsters:

Join us!

Friday, October 9, 2009


Here is a look at my scars.  The right hip is 3 months post op, and the left is 1 year post op.  In these photos, the right one looks longer than the left, but I'm pretty sure in actuality, they are almost exactly the same size.  The left one has just mellowed out and fleshed into my skin.  The right one is still very sensitive to the touch, and very stiff.  I've been having some trouble with the scar tissue on the inside of my body interfering with the free movement of my hip flexors and other nerves that run down the front of your pelvis, into the thigh.  Right where the hip bends, for sitting and such, my scar is hard like a rock and hurts like hell if I stay in one spot too long.  I am supposed to be working at scar manipulation to get it flexible, but it hurts!  It also dries out and cracks if it is not moisturized or hasn't been massaged. 

 For moisture, I use Emu Oil, which is a magical substance that can be used for just about anything.  It is very fast absorbing, so it doesn't sit on top of your skin, or get rubbed off by clothing before it does it's job.   Here is the website for the brand of emu oil that I use:  I also use Vitamin E oil, and just about any other lotion without fragrance in it, if it is convenient.  I've noticed that my scar on the right has these funny grey bumps in it.  My therapist says they are stitches. They may come to the surface, and they may just disintegrate. I didn't notice these at all in my left scar, so they must have disintegrated faster.    

I have to mention also, that with my left scar, I used a product called Dr. Blaine's Scar Care.  It is a reusable silicone gel pad strip that you place over the scar and wear  for 12 hours daily for 90 days.  It is meant to recess the scar so it looks more flush with your skin, and reduce its overall appearance.  I don't think I used it as much as suggested, but I definitely noticed a difference.  I think in the photos, you can tell that my left scar looks flatter and broader than the right.  This is due to the strip.  It is too soon to start using it on my right scar because it is still too sensitive.  I plan to though, maybe after another month or so.

I have graduated to one crutch, which has been more of a challenge for this recovery than the last.  I have been going to physical therapy twice a week, where I do land and pool therapy.  I have started doing basic yoga at home also.  Getting up and down from the floor is not an easy task after hip surgery, and shouldn't be attempted until you are sure that you can do it.  I do it only on my yoga mat, so there is traction, and slowly lower myself from a bending/ downward dog position.  It is the same to get up off the floor- first on hands and knees, push back to downward dog, and then slowly to standing with your knees bent.  

I have my three month post op with my surgeon next Tuesday.  I will get to see how the bone is healing, which is my main curiosity at this point.  I will then start to go to therapy 3 times a week.  I've spent the last month really down in the dumps, and now I need to get myself motivated and really push myself to health.

So, that's where I am at.  My scars are my battle wounds, and will be with me forever.  They will also be about an inch longer after I get the screws taken out of my hips.  I hate to seem vain, but it has been as much of a challenge to accept the way my body looks, as it has been to endure and accept the major structural differences inside my body.  I'm thankful to have someone that loves me and thinks I look like a violin.  It helps me not to think about it as much.  

Tuesday, September 1, 2009

Sacroiliac Joint can Suck It (cortisone, that is)

It will be 8 weeks on Thursday since the PAO on my right hip.  I definitely notice an improvement, especially when I wake up in the morning.  For the first 6-8 weeks, for both of my PAOs, every morning I would wake up feeling like I had been hit by a truck. That feeling has begun to subside, which is a great sign.

Not so great is the relentless pain in my back, to the right of the base of my tailbone.  This pain has stayed with me for years now, and has always been lumped in with the myriad of other pains and problems with my dysplastic right hip.  I described my painful experience with the lower back (lumbar spine) area in previous posts, how it related to my thigh pain and that the professional guess was that my sacrum was out of whack.  Physical therapy with an awesome therapist (Chad Neubrand in San Diego; he is amazing) helped after only a few sessions with him.  I showed significant improvement in my movement ( able to bend the knee again ) and reduced pain in my lumbar spine area.  

As the lumbar spine, thigh and hip pain started to subside significantly, the radiating pain at the base of my tailbone became more apparent.  It became clear that this pain was not related to the other parts that I have been so drastically working to fix.  I wouldn't say that the tailbone pain was my BIGGEST complaint in the beginning, but it was a large part of what afflicted me for so long.  The first doctor I went to for help was because I thought I had bruised my tailbone during a fall at the circus.   That small concern turned into a giant two year journey of three hip surgeries, many months of slow, difficult recovery, job loss, home loss, financial debt and distress, and a loud wake up call about my lifestyle and life goals.  Now, after all that, it comes back to this little bitch of a tailbone that refuses to chill out.

So today, I went to the doctor to get to the bottom of it.  First off, my pelvis is healing at a slower rate than he would prefer, and he is concerned about my nutrition.  (This happened for my last PAO as well, and it may have to do with my body's natural healing schedule).  I haven't been very diligent about getting enough to eat, partly because it is extremely difficult to cook and clean while on crutches, and partly because I have been in so much pain and slightly depressed.  Anyway, I will work much harder to make sure I am getting all the nutrients I need.  
Second, the doctor now understands more the intensity of the pain at my tailbone, how it is overshadowing the greatness of the hip surgery he did, and inhibiting me from moving forward boldly in my recovery.  He suggested cortisone and steroid shots straight into the sacroiliac joint, where it is believed the pain is located.  I of course agreed, since I trust everything Dr. Santore says, and I have tried just about EVERYTHING else to relieve my pain.  The injections are funny; for the first day, you feel great, and then the pain comes back for about 5 days, and then the pain is supposed to go away again. 

The injections are a pain masking tool that sometimes work forever, and sometimes not.  It is a total crapshoot, which is frustrating, but my only option at this stage.  The idea is that with a temporary relief of the pain, I can push forward in my recovery from the PAO.  Once I am healed and walking normally again, the twisted sacrum and sacroiliac joint pain will resolve itself based on my improved balance and strength. 

I am trying really hard to stay positive, keep the faith and project images of a pain free, healthy future for myself.  But I will admit here that those things have been more challenging to overcome than the physical pain and trauma itself.  Sometimes I think I may not ever get better.  Every challenge I have overcome has been followed immediately by another, and it just wears me down.  What if I go through all of this and the pain still doesn't go away?  The psychological stress has taken it's toll on me, and I want so badly to beat it.  I don't play video games, but I imagine that the frustration of just not knowing how to kill the biggest, badest monster at the end of the game would be similar to how I feel. I have tried every angle, every trick, every tool and weapon I can find, and I still can't kill the bloody bastard.  The only difference is that I can't walk away  from the challenge.  The obstacle lives inside me, in my body and my mind, every second of the day, and clouds everything else around me.

I hope this cortisone shot will be the answer to my prayers, and that my recovery will breeze on.  Two months down, four more to go.

Monday, August 10, 2009

Good News/ Bad News

Ok, so THANKFULLY, the problem is not my hip.   My hip is fine, and healing normally for (almost) 5 weeks post op. 

However, the problem IS my back.  Dr. Santore thinks I have thrown out my back.  This would make sense with all the tenderness in my low back, near my spine.  I guess low back and spinal issues can translate to muscle pain and spasms in the leg also.  This would explain the horrific pain in my quad when I bend my knee. When the knee is bent, it stretches and pinches the base nerves deep in my pelvis/butt and spasms through my leg.  

So, I am back to taking lots of hardcore pain killers, muscle relaxers, and anti-inflammatorys.   And I have to see a physical therapist for movement manipulation and massage.  If I did not have a broken pelvis, the doc said that an adjustment from a chiropractor would probably do the trick, but since there are broken things trying to align themselves, it is not a good idea.

One thing I was shocked about, was that we almost stumped Dr. Santore!  He didn't know what was going on!  This has never happened with any of his patients, so he is kind of confused too.  He did a lot of physical tests, to rule out that it was a hip problem, and then deduced from my screaming in pain , and large Sharpie marks on my skin ( marking all my pain points) what was most likely going on in the mysterious land of my lower half.  There is definitely a cosmic memo floating around that reminds every aspect of my life that is must not be easy.  Thanks.

This means more lying around, sedation and waiting waiting waiting...
At least my wonderful boyfriend is here to keep me company!  yay!  

Saturday, August 8, 2009

Boo hoo

Well, in my last entry, I expressed that I had weird pains that I was not worried about.  

It is now 6 days later, the pains are still here, and I am scared!  The pains are intensely sharp and shooting, and only when I sit or stand.  From what I can tell, it is related to bending my knee.  So sitting, with knees bent, is the worst, but also, just on crutches with knee slightly bent is painful too!  I don't know what is wrong!  The doctor has been out of town, so I have to wait until Monday to go see him. 

To me, it feels like a muscle problem, like something is pinched or reset incorrectly.  It also feels like maybe something got shortened and now doesn't have enough elasticity to bend.  It feels like it is originating deep in my hip, like from deep in the butt muscle, radiates through my pelvis, and then shoots down the front of my thigh to the point where I want to scream and cry.  I'm freaked out!  I have been confined to my bed for 6 days because of this, and I am so frustrated and mad.

I am starting to think it is something else entirely.  All the what-ifs in my mind are swirling around to many worst case scenarios.  I mean, it is already bad enough that I am bed ridden after four weeks of positive recovery.  There is obviously something wrong by that fact alone.   

I don't know what else to say.  I just have to wait to see the doctor.  Boo.

Wednesday, August 5, 2009

Fashionist: Michelle and Alycia - Dolores Park, SF

Fashionist: Michelle and Alycia - Dolores Park, SF

Hey, here's a picture of me at Easter this year, just 7 months after my first PAO.  It happens!

Tuesday, August 4, 2009

Some Days Just Suck.

I am feeling terrible today.  

My mom is at a conference in Los Angeles, so I will be home alone during the days from now on.  It is only day two, and I am lonely and frustrated and in pain!  Starting yesterday, I have been experiencing sharp  shooting pain from my groin area through my thigh; on the inner and outer thigh.  It is worst when I sit straight up, like in a chair or on the side of the bed, and pain killers aren't helping.  My body only wants to be horizontal and screams in agonizing sharp pains if I try to do anything different.

But I'm not worried.

During recovery for my left PAO, I experienced very similar shooting pains in my left thigh.  It was awful for a few days and then went away.  As my body is adjusting to it's new construction, there are growing and healing pains that I just have to deal with.  Really, I've discovered that the first 8 weeks are all about staying as comfortable as possible.  You definitely want to push yourself to crutch a little further, or sit up an extra half hour at a restaurant, but really, you just need to relax and let the massive break in your pelvis heal and grow back solid and strong.  

And no matter how hard you may try to stop it...some days just suck.