2016 has started out pretty rough. Beginning at around noon on January 1st, I had to deal with a very painful pocket of infection just to the left of my tailbone. I’m actually trying to use every word to describe it except for the commonly-used medical term because it immediately makes me think of trolls that live under bridges and are covered with ugly bumps. You know, the kind of childhood, made-up beings that strike terror in the brains of the very small. I can tell you that;
1) I wasn’t growing a troll, and 2) I wasn’t growing a tail.
You will just have to fill in the blanks.
The first doctor visit I made was on January 4th, so that an infection could be confirmed. We also determined that it likely showed up because I spend many hours in bed and on my back – about at least 22 of every 24 hours. Technically it’s a pressure wound. This doctor was kind enough to send me on my way with a referral to surgery and a prescription for a hospital bed that is adjustable and useful in avoiding bed sores.
I contacted my insurance company, which advised me that I had to find a durable medical equipment company. I asked if they had a list of providers, and I was told that the doctor should. So I sent a message to the physician’s office through their electronic system and relayed what they told me (more on that later).
Of course, one of the first things I thought was, “How am I going to explain this hospital bed to my dates?”
The second thing I thought was, “Sleeping is going to be a nightmare.” A vinyl covering is great for avoiding having “liquids” seep into the mattress, but terrible for breath-ability, and the noise that is made when I shift even a little always wakes me up. Other things I have to consider: Is my 1912 doorway wide enough to fit a 2016 hospital bed through it? How do we know my very old, wooden floors can handle a bed that heavy?
On the 7th I finally got into the surgeon’s office. He had a resident with him; they decided to cut and drain the infection then and there rather than make me wait for another day or more. They warned me that the Lidocaine they were going to shoot me with might not be as effective because the acidity of the infected fluid would make it so. They weren’t lying. As the surgeon talked the resident through the cutting and kept encouraging him to go “longer” and “deeper,” I contemplated who was the closest in case I could not stop my arms from lashing out.
I had to go back to the surgeon’s office every day to have the wound unpacked and repacked. I even had to go to urgent care over the weekend to have that done since I could not see what was going on.
I learned a lot about Lamaze breathing, because let me tell you, that process was nothing less than white-hot painful.
Halfway through the healing process, the surgeon determined I was healing too quickly. He was afraid that pockets of infection were getting trapped beneath the layers of skin that were forming over the top of the area they cut.
His solution? To make hamburger out of me.
Specifically, he took the stick end of a hospital swab and pushed it into me repeatedly to break up the healing layer. There was no lidocaine this time – why did I want to waste time on that, when this would only take a minute? I was sweating profusely and crying.
I was also incredibly thankful to not have a husband or boyfriend there to witness it. I still have my pride.
This experience was something of a revelation for me. I already knew that my body didn’t like having the shunts and formed massive amounts of scar tissue around them, and succeeded in either breaking them or clogging up the drainage catheters. I also already knew that stitches have to come out by day nine after surgery or my body starts to grow around them like a tree grows around an object attached to it in early years.
This wound, though, really laid it all out for me. I am a super healer. I don’t grow keloids like some unfortunate souls, but instead, the collagen-inducing mechanism on me is turned on “high” to immediately close up any holes that are created. I still don’t know how this plays into the disease that is trapping CSF in my cranium; I’m waiting for that big reveal, and when it comes, I’m going to shout it from the rooftops.
A week ago, I got a response from the doctor’s office. The nurse was told me that she was told by the insurance company that I had to find a durable equipment company to take the “prescription.” I finally found some documentation for providers in my area and called every one of them to find out which one could handle a hospital bed order, because not all of them do – but I should have no problem finding C-PAP masks for sleep apnea if I ever need one, that’s for sure. When I finally connected with someone who could help, she told me I had to have my doctor’s office call.
I put my foot down and said, “Look: I have a fax machine and I have the order. I am going to fax this to you. I will give you my insurance company info. I will give you my doctor’s office number. I will give you my address and phone numbers. I need a bed.” She kind of laughed and said that I shouldn’t have to do all the work.
I agreed, but such is the life of a person whose disease is not ordinary.