A Fragile Body, A Tough Mind

12.13.13.

I got great news today. The doctor seems to think that my right hip is actually improving. From my X-rays, he commented that there are signs of revascularization, meaning that the circulation has been restored and the bone is being revitalized. That was the hopeful outcome of having core decompression surgery in the early part of 2012.

This was very surprising to me, since before my appointment I felt confident that he'd be ready to schedule my next hip replacement. Instead, he offered me a cortisone injection into my joint to possibly relieve the pain. I'd had one in my bursa [a sac adjacent to a joint], but never in the joint.

I was taken to a room that I had never been in before. It was large and bright with a single table in the middle of the room. Everything was white or silver. It reminded me of a surgical room in a hospital. They monitored my heart rate and gave me a nerve block before injecting me.

The nurse told me that they don't usually do the injections "on the fly" like that, but the doctor insisted. When she was helping me to prep for the injection, she said "He [the doctor] said you'd be an easy patient. He said your 'tough.'"

"Tough," I thought, as my mind echoed her unexpected word. I must have let out at least a small smile, though I'm not sure if that was purely mental or if I actually wore it on my face. She asked me to list my past surgeries and medical history. As I recalled something new to add to her list every few seconds, I started to think about it again.

Tough.

My doctor, who knows my fragile state better than anyone, called me 'Tough.'


Do me a favor and do a google image search for "tough." [click on the image, type in "tough," and then click the camera icon in the search bar].

What do you see? Mud obstacles, muscular men, professional fighters, people running races, toned women with 6-packs, Rambo, people lifting weights.

Are those results what you think of when you hear the word "tough?" For me, the results were expected. When I think of a "tough" person, I do not think of a skinny, frail, disabled person like myself.

The only thing that struck me as odd was that all of the tough people in the images look so angry. I don't think I saw a single person smiling. Are tough people not supposed to be happy? Are they not expected to smile? I smile. Again, I just don't fit the bill.

The definition of tough is just about everything my body is not.

1. strong and durable; not easily broken or cut.
2. not brittle or tender.
3. sturdy; hardy.
4. capable of great endurance.

My body is not strong. My body is not durable. My body is easily broken and cut. My bones are brittle and tender. My body is not sturdy or hardy.

But then I got to number 4. I'm not always capable of great endurance, but I have learned to endure. The unpleasantness associated with endurance comes in many forms and circumstances. And for that reason alone, I allowed the word to sink in and I decided to take ownership of it. I actually liked being called exactly what I thought I was not.

My body is weak. But I am not.

After my injection, I hopped down off the table so quickly that the nurse asked me to sit back down to make sure my leg was stable.

"It feels good," I said, as she lowered me back to sitting position.

I'm not sure if it was the steroid injection or being called "tough" that had me feeling like a Transformer. Perhaps it was both.

After learning that I wouldn't be able to drive home, I called my hubby to come and get me. By time I was finished, he was in the wait room with my crutches in hand.

"I don't need those," I said.

The nurse's eyes read like my mother's, telling me to 'be careful,' but from her smile I read, 'you go girl.' As I walked out of the building with my arm looped in with my husbands, I realized that in those moments, and many other moments that spanned more difficult circumstances, I was tough. When it counts, when my body is not tough, I am still tough.

I went back to work and soon it was time for my youngest two children to do their holiday performances. My almost-3-year-old [who is built like a linebacker at nearly 35 pounds] ran over to me, and for the first time in more than two years, I lifted him up, rested him on my hip and walked several steps over to my husband without a single limp. I didn't even realize I wasn't limping until my husband told me. I'm so used to walking straight to my husband after lifting my son, because I have to quickly pass him off due to the pain. He's still young enough to want to be held often. And he never seems to give up on me even though I'm sure that he's aware of my limitations by now. But this time, there was no pain. And I held my son until he was too antsy to be held any more. And when I lowered him back to the ground, still no pain. And when I sat on the floor with him in my lap, still no pain. For a long time, these types of interactions, especially with my youngest, have been limited by my pain.

Only time will tell if the injection will actually help. The numbness was still in effect at the holiday party, but those tiny moments still felt triumphant. And just maybe, being able to look forward to and celebrate the tiny triumphs is exactly what makes me "tough."

Maybe, it's what makes you tough, too.

Moments like those, though few and far between in recent years, help me to endure.

Sure, the numbness helped. But so did my mentality.

Maybe it's time the google image search for "tough" offered a new perspective. Because as of today, my definition of tough has less to do with the body and more to do with the mind, the soul and the spirit.

"Therefore, strengthen your feeble arms and weak knees. Make level paths for your feet, so that the lame may not be disabled, but rather healed. Make every effort to live in peace with all men and to be holy; without holiness no one will see the Lord." -- Hebrews 12:12-14

The Neverending Story

12.01.13.

If you are looking to read about a young boy named Atreyu who flies on a luckdragon to a magical land called Fantasia, I'm afraid you've come to the wrong place. I didn't mean to mislead anyone, but instead I'd like to offer my real-life neverending journey that starts with me racing through fields of tulips at the age of 32 and continues through to my current state of moving like an 80-year-old at the age of 34.

OK, so I never actually ran through a tulip field, but if I could go back, I certainly would. I promised an update on my ankle a couple of weeks ago. Better late than never?

If I consider myself the main character of this story, there are a few things you should know about me in order for this post to play out properly. I have had four surgeries, including a hip replacement, which were a result of developing Avascular Necrosis (bone deterioritation due to a lack of blood supply) in my hips and right shoulder. I'm angry, because I believe that the Mirena IUD triggered my condition, yet there are no trials or studies to confirm nor deny that. I only have my experience and the bits and pieces of information gathered here on this blog. And then there's intuition, I have that, too.

This blog started as a way to chronicle my experience after being diagnosed, but it grew into mounds of online research that was too overwhelming to bear at times.

I recently returned to my doctor's office for X-rays on my ankle. The experience was all too familiar.

Take your clothes off and put this on.
Lie down on the table and try not to breathe for a few seconds.
Get dressed. Go back to the lobby and wait.

The doctor looked at my ankle X-rays and stated that he didn't think it was Avascular Necrosis. Instead, he said, it was likely the inevitable outcome of having really terrible bone structure in my ankles. I was born that way. I have no arches. And my feet and ankles are hideous. Always have been. If you have nice, normal feet — I envy you.

You'll need to see a foot and ankle specialist.
You might need to have your feet and ankles rebuilt.
But first ... my doctor said I should have another MRI to rule out Avascular Necrosis as the cause of ankle pain, which was causing me to limp [more than I already was] for weeks without any relief.

I was relieved to hear that he didn't think it was Avascular Necrosis, but nervous that it still needed to be 'ruled out.' If it was AVN, that meant that there was still a larger issue. It would mean that I was still clotting and the blood wasn't reaching my bone. The good thing about all of the damage that was done to my body, was that it was done. Instead of acquiring new damage, I was just repairing the old damage. I could handle that. Also, if it's not AVN in my ankle, that means that I have my first non-Mirena-related diagnosis in two years. In my twisted way of thinking, that's a victory. I really don't want to blame everything on an IUD. I promise.

So, I scheduled the MRI. And then the ankle pain stopped. That was odd.

I'm slow to update on this, because now I don't even want the MRI. I know I should 'rule it out' and get it over with, but my ankles doing OK now, so maybe I should just enjoy that while it lasts? If I get bad news, I'll feel compelled to act. But if I don't know, I don't have to do anything. On the other hand, if it is AVN, it will only get worse and I need to catch it early. Even if it isn't AVN, he'll want to refer me for a possible foot re-build. He was talking about rebuilding my ankle using bone from my foot. That sounds unpleasant. So, yep, I just decided. I'm putting this off for now.

I don't believe it is AVN in my ankle. If it was, I highly doubt the pain would have stopped, instead it would have worsened. Maybe I did something to my ankle and I just don't remember? On any given day, I dodge 30 hot wheels and 5 tiaras on my way out the front door. Or maybe my feet are just severely messed up and I'm just putting off a 're-build' until later, you know, until it's more convenient to have my ankles rebuilt [sense the sarcasm?].

Ahhhh. Ignorance is ... not really bliss.

Anywho — I'm still going back to see my doctor in 2 weeks because I also had X-rays done on my right hip and I can feel a second hip replacement growing closer each day. I'm limping. It takes me about 20 seconds to go from sitting to standing, either because of the pain or because my hip locks up or 'pops' when I do. And not the really cool lockin' and poppin' like those hip hop dancers do, but the really bad lockin' and poppin' where you're reminded that your very structure is falling apart each time you attempt to rise to your feet.

Part of me wants to wait it out, because I don't want to have surgery again. Another part of me wants to get it over with.

I want to take dance classes for the heck of it and run another 5K just because I can. I want to run through a field of tulips. None of those things are possible in my current condition.

It's not that I'm not living well — I am. I going and doing, but the limitations are killing me and the pain is annoying. As much as I try to tell myself things are fine the way they are, I still desire more. Maybe that's just greed, I'm not certain.

And so, for the main character of this post (me!), the conflict is within me. I just need to make another decision.

And the neverending part is knowing that I will always have to make decisions like this. Even when both hips are replaced, my replacements will need to be replaced one day. My replacement replacements might even need to be replaced. That's a lot of replacing.

So, my story continues. And the questions constantly looming through it all is 'why?' Why did this happen to me and why have similar things have happened to other women who used Mirena IUD? And why doesn't anyone with the ability to do something about it, actually do something about it?

Where's my luckdragon when I need him? Perhaps he can take me to a magical land where companies manufacture things without any deception. And perhaps, I'll get a new set of magical hips and ankles while I'm there.

Not the end.

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