Waiting...

Waiting for my ID specialist to call with scan results. Hopefully I will get them today, but chances are I will get them early next week.

The emotional roller coaster is going way to fast. On moment I feel fine. Whatever happens, life still goes on. I am still the same person; still in nursing school; still feeling healthy and energetic. The next I am definitely not o.k. I am desperate for good news. I am reckless, edgy, tense. Or I am invincible, daring,... sometimes even a little bit brave! If there is an infection, bring it on! I can fight it again, just like last time. Then I despair again. Did I rally fight the infection if it has come back? Can I really fight it again?

I know that the MRI from December shows something in the bone and I know that my ID specialist thinks that there is likely still an infection lingering in my leg. I therefore went into the bone and WBC scans with the expectation that something would show up that would confirm the presence of an infection.

There is, however, a little voice inside me desperately hoping that the scans show nothing at all.
The bone scan definitely showed increased activity around my right tibia, but I could not make out the images from the WBC scan this morning. I am left here, waiting, hope still lingering. I pray to what ever gods there may be that the MRI is wrong. That whatever showed up on the MRI is nothing to worry about. But my MRI from December 2014 should not have looked like the one from October 2012. Things should have healed over the last two years. I need to stop thinking about this. My mind runs in circles, endlessly, infinity going, clinging to thoughts, both comforting and irrational. I don't want to know the results. I am limbo and everything is  alright here in this middle place, between scans and results. I can stay here forever, just waiting. But I can't. There is a part of me that wants to know, needs to know so that I can do something. Anything. Action is better than not knowing. At least I would feel empowered and in control.

On Wednesday, when I cam home after the first part of the WBC scan, I called my mum. I told her about all these feeling I am having. She came up with a really good explanation of what people go through when they wait for scans. She said that this in-between period is like Schrodinger's cat. While the box is closed, the cat can be considered both dead and a live. While waiting for results, a patients can be considered both sick and healthy. I can see myself as being both disease free and having chronic osteomyelitis. I can fill the roles of both patient and healthy individual. I am in limbo, a delicate balance, waiting for one phone call, and that call will throw everything into either normalcy or chaos.

I don't want to be ill - nobody does. But the role of patient is so so so familiar, so easy to slip back into. Life becomes simpler - you take your medication, comply with a treatment plan, show up for appointments and scans that other people arrange for you. When you are ill, you accomplishments feel even greater. I find myself hoping both for health and an infection. I want to be healthy, like anyone else would. Life is going so well at the moment, but if the infection is back, I don't have to worry about every twinge or spasm in my leg anymore. I think I am just afraid that if the results are favorable that I will feel like I have wasted everyone's time, even though I know that I have a valid reason to get all these scans. Heck, the ID specialist herself said she thinks it is very likely that the bone infection is back.

In 2011, when I was finally given a diagnosis after 6 years, I was relieved. It wasn't all in my head. I could get treatment and get better. It is so much worse now, waiting, nine years after this all started. I got treatment, I went through several surgeries and IV antibiotics and a PICC line, I took countless pills, had innumerable scans and appointments. I had a goal to cure the infection, and I reached it, and then I had a goal to get my energy and strength back, to continue with life, and I did those things! Now I look back in time, at how hard it all was, and see how far I have come. Having to goo back now would be so much worse.

I just hope that everything will be o.k. Please let the infection not be back. I can physically handle anything that happens, but I can't do the emotional, mental part again. I need to be healthy. That is all I want. More surgery? No problem. Another PICC line? Bring it on! Pills and appointment? Why not!
But not the part where your perception of yourself changes, from healthy to ill. And not the worry that comes with scans and negative results.

I have sat here, waiting for results, so many times before. It never gets easier, and you never get used to it. The fear of the unknown and the desperateness don't go away. Many things in life become usual, but this is not one of those things. I hope my ID specialist calls tomorrow. At least if I know, I can do something about it.