Monday 6th June 2016by chel
This is going to be long, but I want to get all of the surgery stuff out in one post (at least the nuts and bolts of it- there’s a lot of positive stuff I’ll share soon, but I sort of want to do that in another “here’s where I am now…” post). Thanks for reading.
As many of you know, I was born with Spina Bifida. One of the “things” associated with that was that I had to have my left foot reconstructed a bunch of times when I was a kid.
When I was 18, and finally stopped growing, the doctors wanted to reconstruct my foot one last time, but the bone in my foot was kind of destroyed from all the surgery I had on it previously, so they cut out a chunk of bone from my left hip, crafted a new foot out of it, and then stuck it inside my left foot with a bunch of titanium staples, screws, plates, and pins.
About a year after that surgery, the metal plate had to be removed because my foot reacted negatively to it.
A few years later, two of the screws individually worked themselves out the bottom of my foot and were subsequently removed.
Then everything settled down for a while.
A few years ago, I noticed a little bruise on the side of my foot, in between my arch and big toe. It was really small, just a little dot. And when I ran my finger over it, I could feel a little pointy thing under it, like the point of a pencil was trying to jut out of my foot.
It was a surgical pin, and an x-ray confirmed it. I spent about a year looking at the bruise, and wondering if the pin might make a sudden appearance. But it didn’t hurt, and it wasn’t getting worse, so the doctor said to just leave it be and when it was time for the pin to come out, she could probably just use some forceps in the office and pull it out. That was a few years ago, and it seemed like the pin was just pushing on my skin from the inside, but not working its way out, so I kind of thought it might *not* be an issue after all.
Suddenly, about a year ago the little bruise got a little bigger, and then it got a tiny crack in it- like a little tiny paper cut. And then it healed up. It was never super red or painful or anything that I normally associate with hardware coming out of my foot, so I just kept taking care of it and waiting for it to go away. My foot didn’t swell, it didn’t hurt- it was just like a crack in dry skin almost. And then it healed.
Then it cracked again. Then it healed.
This kept happening for several months. It would close and everything would look super healthy and then it would crack open again.
I knew in the back of my mind it was time for the pin to come out, but a huge part of me was, like, “NO WAY, I CAN’T DO IT ANYMORE. I CAN JUST TAKE REALLY GOOD CARE OF IT AND IT’LL BE OKAY.” I mean, I have had some major surgeries in my life, been laid up in bed for months at a time, etc. and the removal of surgical hardware is not a big deal, all things considered. But there was just this part of me that couldn’t even process the idea of another surgery. It’s been 17 years since the last surgery (when the second screw came out) but something about the idea of surgery and being out of commission even for just a few weeks was too much for me to handle. I didn’t understand why I had such a negative reaction to it, but it was enough to make me want to avoid surgery.
Looking back (and I’m not outside of this whole situation yet, but I’m able to have a tiny bit of perspective as each day passes…) I really think I saw this surgery as a terrible, inevitable re-entry point into the world of health problems. Like, there was no way it would just be simple, because it never is. So in a way, I saw any type of “procedure” as a weird gateway back into a part of my life I wanted to be done with. There’s something about the whole surgery and recovery process that makes me feel so powerless, and the older I get the less I am okay with that. I’ve never felt like many of my doctors or health care providers (besides the ones I have been seeing as an adult) gave a rat’s ass what I thought, or how what they did to me might effect me. The idea of going through any of that again, at this point in my life, was sort of intolerable. Like I would be giving up a part of myself to go back into that. It literally felt like a grand piano falling onto my chest every time I thought about it.
On the flip side, I have been literally baby-sitting this little bruise for a year. It’s been EXHAUSTING. Terrifying. Every time I looked at my foot, I was half expecting that pin to just be poking through the side of my foot. But it didn’t happen, so I just kept sort of dreading it and freaking out about it and getting it to heal and then holding my breath until that little crack came back. A few months ago, I started to restrcit pretty much any activity that required me to wear my Nikes (pretty much anything outside the house/pool) in an effort to get it to stay healed.
Of course, the longer I waited, the worse my brain made it all out to be.
Finally, in early May, the little tiny crack thing started bleeding a tiny bit. Then some weird fluid came out of it- NOT pus, because I have seen pus- but white clean fluid. I started thinking to myself that might be some sort of fluid from bones or something and I just couldn’t take it anymore. I called my doctor on a Sunday afternoon (she’s the kind of awesome doctor who shares her home phone number and cell phone number with patients) and got in to see her the next day.
Of course, the pin had to come out. It was basically pressed up against the side of my foot from the inside, and as long as it was in there, I’d have that stupid little bruise-y, crack-y thing. Nothing I could do (staying off my foot, putting sixty layers of gauze on it, etc.) would keep that thing closed. I started antibiotics, scheduled the surgery for Friday, and began going to the ridiculous number of pre-operative appointments that are now required in Florida due to insurance fraud.
To be honest, the pre-op appointments were 10000x more stressful than the surgery itself.
I gotta be honest, almost everything not having to do with my foot seems like a string of never ending unnecessary stuff for insurance purposes, and I’m so tired of non-essential medical visits. I totally understand why it’s important to see my doctor once a year for a complete physical and blood tests and to check on my well-being, but to have to go in every six weeks or three months just to chat with someone in the office (not always my doctor) for five minutes so I can get a refill on my anemia meds or whatever else I need seems so outrageous to me. I’m not on any pain meds, never have been. It’s all just standard stuff. But there’s all these doctors, all the time. And the older you get, the more there is!
So all the pre-ops seemed a little superfluous when all I wanted to do was go home and just steel myself for the surgery and REST.
But I got through it- Tom (who is freaking amazing) went with me to every single appointment and test I had to go to. I managed to put my responsible, non-anxious, big-girl pants on and get it all done. That was a little bit of a surprise- one thing about me is I am very responsible, health-wise, and when there is something going on, there’s this little efficient, outgoing personality that emerges from my total introvert regular personality and takes total charge. She’s bossy and assertive and not afraid to get angry. She asks for what she needs and feels no anxiety about scheduling appointments and calling a thousand people on the phone and saying “no” and “yes” when necessary.
I want to talk about this is another post, but I think the reason “bad-ass Chel” was kind of underground is because I’ve changed a lot over the last ~20 years, especially the last ten years. It used to be that when I had a medical problem, I would get super pissed, and that would sort of fuel me through it all. There’s a line in a Rage Against the Machine song that always resonated with me: “Anger is a gift.” Totally! If I weren’t so fired up as a kid and a teenager, there’s no way I would have gotten through my life. The frustration kept me going. I always felt like it just HAD to get better. Because it would be ridiculous if it didn’t.
This time, though, when I found out about the surgery, I just felt really, really sad. Like, just bummed out. That was so weird for me. I think it’s better for me, to be honest, because frustration is a good ride up, but not easy to come down from. Sad is workable, it’s something I can understand and feel compassion and maybe work with.
So there were some interesting discoveries I had about myself during this whole thing.
ANYWAY, the surgery date came and it was not terrible- I was out of the surgery center before 4:30pm on Friday, and even though the procedure had been a little more complicated than expected, and it took them FIVE STICKS to get an IV started because of my reluctant veins, it was not all that traumatizing. The nurses were super nice, I really love my doctor, and Tom was there for everything and kept me from being freaked out.
The pin turned out to be threaded, like a screw. It was jammed into my bone, tight, so it had to be sheered off at the bone with a saw instead of pulled out, which meant a bigger incision for the saw and a little more maneuvering, on the doctor’s part. (Why the doctor who installed that pin left 3/4 of an inch of it hanging out the side of my bone baffles me, but whatever.) She did an amazing job and cut it off neatly right at the bone, and it’s no longer piercing the side of my foot.
When my doctor cut open my foot, she discovered a pocket of fluid near the pin. It was clean fluid (sterile, or so she believed- just residue from where the pin had been scraping up against the inside of my foot), but she sent a culture of it off to the lab to see if there was any funky bacteria in it.
After the surgery, when I was still in a bit of a daze from the anesthesia, she mentioned fluid in my foot, culture, etc., I was, like “no problem, whatever you like, can I go home soon?”. But then on the way home from the surgery what she was saying began to sink in, and by 8pm that night I was in tears, freaking out.
If the culture came back positive on the fluid in my foot, as a precaution, they might put me on IV antibiotics for six weeks- in other words, the protocol for treating a bone infection.
The reason I freaked was because I’ve HAD a bone infection. I was 18, a few months in college, and this cut I had on my big toe got a super nasty bug from the gross bathrooms in the dorm and that was that. Within 36 hours, I got a bone infection. I had been to the doctor on a Wednesday and had an X Ray and it was clear. But by Thursday night, the bone was blurry, which is a sign of bone infection. It literally got into my foot and destroyed the bone in 36 hours.
I was hospitalized immediately (out of school for the next year), had half my toe amputated, inserted with a big tube in the middle of my chest, and was sent home for six weeks of antibiotics. It was a big deal. Luckily. I beat the infection, and saved my foot (and then had it reconstructed with the hip bone and metal bits that bring us to the current part of this story) but I had a lot of complications with the central IV line and the whole shebang was really traumatic.
Like, so traumatic it made me insanely OCD (literal OCD, not slang) about keeping my feet STERILE and clean and healthy. I have my own bathroom and no one else is allowed in it- not Tom, not Gracie. I steam and bleach all the surfaces in it every other day and wipe them down daily. I have a special little hand held shower in my shower that I use to disinfect my foot after I get out of the regular shower, and then a little sterile area where I carefully dry and bandage it (even if there’s nothing wrong with it), just to keep it sterile in case something happens when I’m not in the bathroom. So if I get a blister or something when I’m out, there’s already a sterile bandage on my foot, so there’s no chance of infection.
I do my laundry every single day, seperately from everyone else’s laundry, and if Tom or Grace’s stuff goes through the washer/dryer, there has to be a “buffer load” in between so my bathroom towels do not pick up anything from their laundry. Nothing goes in the dryer unless it’s been thoroughly washed. No one is allowed to handle anything that goes in my bathroom (including my laundry), and whenever I bring something new in (everything from shampoo bottles to whatever) the outside has to be cleaned well before it goes in there.
I know this is insane, but after the bone infection, it feels like a totally worthy sacrifice. It’s what I do to ensure that I stay infection free.
Like I said, this is OCD. Not the bullshit kind. And I’m okay with it because for 25 years, I’ve had maybe TWO minor skin infections in my foot, TOTAL. And that’s with exposure to stuff I get gardening and swimming. That’s a pretty big accomplishment for me, and worth the work.
So after years of this, to be told I might need to be treated with the protocol for bone infection FLOORED me. And the only thing I could do was wait for the culture to come back, which was going to take a week. I was on antibiotics before the surgery as a precaution, and given a big dose in my IV during the surgery, but I had a feeling that something wasn’t right down there, and it scared the shit out of me. One sign of infection I get is one of my lymph nodes gets tender, and I had that going on. It has happened psychosomatically (did I spell that right?), but I felt like there might be something going on. So I was scared, even though the doctor really felt like the fluid wasn’t anything really serious. I just felt like anything could happen, and it was devastating, in a way. It just felt like everything was totally beyond my control.
I tried to not think about it, but… you know how that is. I just took it day by day.
One good thing is that I did do a little bit of research and found out that recent studies are starting to show that oral doses of certain antibiotics are just as effective as those drugs given through IV with osteomyelitis (bone infection) and fine in cases of precautionary treatment, which helped me feel a little better- if worse came to worse, I would have to figure out a way to really push for oral antibiotic treatment. And that might mean pissing off my doctor, which I didn’t want to do- she’s literally the only person I trust with my foot. So it just seemed like this giant cluster. But I was really determined to stick up for myself and find a way to be both responsible and look after my own well being. It empowered me a little bit. I hung on to that all week.
Finally, the culture came back on Thursday afternoon- and it was positive. BUT, it was positive for Strep (like strep throat)- a bacteria that is very responsive to many common antibiotics, and most of those are available to be taken ORALLY.
HOLY CRAP. I was just waiting to hear one of two things: “negative culture”, and if not that, then “oral antibiotics”. I got the oral part. Holy crap.
It’s now Monday, and it still hasn’t sunk in. I feel a lot better than I did this time last week, but, a little part of me is still terrified. This whole thing has been going on for a year. And it got intense. I feel like I barely avoided something really huge, so I feel like I need to tiptoe, to be very quiet and still, to keep things okay. I’m not going to feel okay until I’m beyond this completely. So for now I’m just doing what I can to get through each day and take good care of myself.
And it’s much better than it was a month ago or three months ago or even a week ago, because at least I am sort of on the resolution side of this whole thing, even if I’m scared that it’s not over.
It’s weird. I’ve spent the last nine months feeling like I was just on the verge of falling apart, literally kind of coming apart at the seams. Very “on the edge” and nervous and not trusting my own body and trying to hold it together. My main goal was getting this stupid pin to go away, and it literally has. And I don’t know what is on the other side of that. So I’m just in the midst of it, trying to be careful and still and take each thing as it comes.
(I do want to talk about some really positive aspects of this situation, but I’m going to leave that for another entry because it’s late and I have been working on this off and on all day and I need to get to bed.)
If you read this far, you are seriously amazing and I can’t tell you how much I appreciate you just being here and giving me the space to talk. It feels really good to write about this, like I’m able to sort it out a bit and see it as an experience rather than a new way of living, if that makes any sense.