Like a frog in hot water

I had a new home care nurse this afternoon. New as in I had never met her before, not as in a completely new nurse fresh from school and passing her certification exam. It seems that I have a primary nurse, the one that I see most of the time, and then a small group of other nurses who come when the primary nurse is unavailable.

So today's nurse was new. I am always a bit weary of getting new nurses because I have had some bad experiences with a few of them in the past (although the majority by far where amazing, would go out of their way to make me comfortable, extremely pleasant and professional beyond all of my expectations). But back to being weary - let's face it, I am a bit picky about the care I receive. This generally has nothing to do with the nurses who come over to my house and everything to do with dealing with a broken leg and bone infection for almost a decade. The last thing I want is another infection because someone failed to wash their hands properly or didn't clean a medical instrument. I am not saying that I am paranoid, because I am not, just that given everything I have been through that I need this to go right and end well. As a result, I rather be a bit too cautious than not cautious enough; I rather speak my mind than regret not saying something later on. Today's nurse did not disappoint. I had a good chat with her about my fixator, everything I have been through since my original fracture and all the interesting things she gets to see/do as a home care nurse. She was also able to answer some of the questions my mum and I amassed about pin site care over the last few days sans nurse. On top of that, she did a great job cleaning my pin sites and redressing them.

So I liked today's nurse and hope she comes back sometime in the next months before my fixator is removed. But liking my home care nurse is not the main part of this post. The above information is just setting the scene. As described, I have had a fair bit of interactions with home care nurses - post surgery in 2012, PICC line care for just over a month over the summer, briefly post-surgery number four in August, and now again post-surgery number five. I have also had an insane number of interactions with health care staff in hospitals over the past decade. We are talking five surgeries, three PICC line placements, countless appointments with my surgeon, family doctor and infectious disease, what feels like a gazillion ER visits in the past year, I don't know how many MRIs, CT scans, x-rays, WBC scans and bone scans, plus all the times I needed to go to a lab to have blood work done. While people may have stared at me in public because of my crutches, cast, PICC line, or wheelchair, I always felt normal when dealing with health care professionals. I was always just another patient. I could blend in at the hospital. That made me feel normal and, given how abnormal things actually are, that felt really really really good. But I can't blend in with the external fixator. I expected people to stare at me and my shiny scaffolding while in public. Most people don't even know that external fixator exist. Heck, in the last decade that I have been seeing an orthopedic surgeon, I have only seen two other people with fixators and met a third who recently had hers removed. So I prepared to be stared at. What I wasn't expecting was all the stares I get from health care professionals. That's right, they stare too. I can handle the man standing in line in front of me at Wal-Mart telling me that he is "admiring the engineering" that is my fixator, but I find it much hard to accept comments from nurse, doctors, etc.

Back to the home care nurse I had today. Like I said, I like her and hope she comes back. But like many other health care professionals, she was somewhat in awe of my fixator. Even among health care professionals, fixators are rare things. When I first met my primary home care nurse last week, she told me she had never seen one before (and she had been a nurse for close to twenty years). While in the hospital, I was told my surgeon only does this type of surgery 2-3 times a year. So fixators are pretty rare and, as a result, people find them fascinating. Today's nurse made that very clear. She was excited to see it and to do the dressing change for the pin sites. She repeatedly stated how cool and amazing the fixator is; I could see the excitement in her eyes. She also asked if she could take a picture of it, which I gladly consented to. Her reaction to the fixator was completely normal, and I don't hold it against her. At the back of my mind, however, was a little voice screaming that things were not okay. I understand when people tell me how fascinating external fixators are and how amazing it is that doctors can regrow bone. I get it when they tell me how wonderful the technology, or engineering is. But I am seeing it from a different perspective. While other people are admiring the scaffolding on my leg and oohing and ahhing about how great it all is, I am sitting here with the thing actually connected to me. It is screwed into my bone, sticking through my skin. Uncomfortable, nerve pain, tingling, numbness, pin site pain, bone pain, muscle atrophy. Add the fear and worry of everything that could go wrong, like non-unions, bone or pin site infection, the bone healing too quickly or a lack of bone regeneration at all, coupled by the hope that this will finally be the answer that gets me walking and infection free. Like many other people, I appreciate the technology and innovation behind my fixator and the entire bone transport process, but I also experience the fixator differently because I am the patient. So hearing people, even health care professionals, ooh and ahh at my fixator gets a bit frustrating after a while. I just want to feel normal; I haven't felt normal in a long time because of the bone infection. External fixators do no equal feeling normal.

This brings me to my next point. The interaction with today's nurse made me remember how abnormal everything that I am going through or have been through in the past decade actually is. Today's nurse was really curious about how I ended up with the fixator. This warranted recalling all the major events (summed up in a few minutes) that have occurred since my original fracture in 2006. As I told the story, there were more than a few "Ohh, that’s horrible" or "You poor thing" type comments on the part of the nurse. All the while, I am sitting there saying "It's not that bad". But in reality it is. All of this could have been avoided if I had been given several weeks’ worth of antibiotics after I broke my leg; or if someone did something about my delayed union; or my doctors took all the signs and symptoms of infection that I had seriously. People hear that I broke my leg in 2006 and ended up with an external fixator almost ten years later. That shocks them. They see that I went from something simple to something extreme and rare. But it wasn't like that for me. For me it started out as a simple broken leg and things slowly got worse and worse as time went by. I became accustomed to things one step at a time and accepted them as my new normal. First a broken leg, then a delayed union, then leg healing crooked and requiring surgery, then years of symptoms indicating infection but being told everything was fine by my doctors, then further surgery to take out the hardware in my leg, then more sings of infection, then being diagnosed with the chronic bone infection, then surgery and antibiotics and a PICC line, then being told I am all better, then symptoms coming back, then the relapse being diagnosed, then another PICC line, then a third, more surgery, and then more surgery again. And all the while waiting and adjusting to life with health problems and limitations. With everything that happened, I redefined what normal meant to me. So by the time I actually got the external fixator it was no big deal, just the next logical step. This process makes me think of the boiling frog anecdote. If I put a frog in a pot of hot water, it will naturally jump out, but if I put it in a pot of cold water and slowly heat the water, it will stay put and eventually die (literally croak!... bad pun, I know) because it gets used to the gradual changes in the water temperature. If I went from being healthy and walking on my two feet to being in a horrible accident and waking up with an external fixator the next day, I would definitely think "This is extreme and horrible and the worst thing that has happened to me in my entire life". But because I slowly got used to things building up over the years, one more bit of bad news after another, one more extreme surgery than the last, I got used to things, like the frog in the pot of boiling water. I was sitting in my kitchen today telling the nurse about everything I have been through regarding my leg. She kept commenting on how horrible it all is and how chipper and positive I am, and all I could say was "It's not that bad". But it actually is. Today's home care visit forced me to revaluate things. What I am going through is bad and it definitely is not normal. And I might say that I am fine and that the fixator is no big deal, but that's just a coping mechanism to get through this. Things are not fine. They are not okay. They are anything but those things. And it was good to have a reminder of that, it makes it okay to feel sorry about myself or have a bad day or not be chipper around other people when they ask about my leg or fixator. It is good to have a reminder that there is a normal to return to when all this is done. Life is not supposed to be the way it is right now and that is good to keep in mind. I don’t just have to grin and bear it and tell myself things are okay so that I can cope with the fixator and missing 6.5 cm of my tibia and not being able to walk. Trying to convince myself of that all the time it is draining. So it is good to pause and remember that there is an actual normal to get back to.

And now we have two conflicting things going on: on the one hand I feel completely abnormal when strangers in public and even health care professionals stare at me, or rather the external fixator which happens to be connected to me, and on the other I have gotten so used to my circumstances that I do see the fixator as normal and part of the natural progression of events given everything that I have been through. In my world, it would even be normal if this fixator and bone transport didn't work and my surgeon and I had to figure out something else just because I am so used to things going wrong when it comes to my leg. So I feel both normal and abnormal and I somehow have to reconcile those two together. The only real healthy option is to remind myself that yes, this is abnormal and it therefore makes sense that people stare and for me to deal with my feelings about it all, while also reminding myself that I am tough and strong and if I could get through the past decade, I can also get through this. Yes, this is not normal, but neither was the last decade, and that certainly has to count for something and has helped me adjust to my current situations, normal or not.

And that’s it really. It feels good to get that all out. Most people don’t “get it” when I explain that this just feels normal to me or that I don’t always think of the fixator as this grand amazing contraption, but I still need an outlet for my feelings. Blogging about these things really helps.

Congratulations to anyone who made it through this whole post. This one was long and tedious, I know. It was meant more for me to vent than anything else. I promise there will be some better posts to come (I have a long list of ideas posted to the cork board above my desk and I still have to update about surgery, the hospital stay, post-op, etc.). One of those posts will include what I think are some pretty epic x rays! And new x-rays this Friday too. But for now I am off to bed. I have sat way to long at my desk, typing away and I can feel my already stiff ankle and foot swelling even more.

Ps. I really wish that spellchecker would recognize the word fixator. This entire post is full red marks underlining that one word!