Where we are

I typically blog more about the kids and things we are up to; I try to not use this blog as a forum for droning on about myself, because nobody wants to hear that. I did, however, want to give an update on my journey. It's been a few weeks since I "came out," and a few things have happened since then.

I am 2/3 of the way through the process of getting an Interstim, which is essentially an internal TENS unit that shocks the bladder into behaving correctly. It isn't indicated for IC or chronic pain per se, but it tends to help many IC patients as a side effect. I have already tried literally everything else there is, and at this point, I really don't have anything to lose. It's worth a shot. 

After being selected as a candidate for the procedure, I went to a pre-op appointment to discuss how this would proceed. It was originally supposed to be a five week long process consisting of 2 stages: 

1)Stage 1 would be a surgery where a needle would be placed into my lower back in a location where nerves travel to the bladder. A small wire would be left in place and send electrical impulses to these nerves. I would be sent home for a week to see how things go. I would meet with the doctor again to discuss whether this Stage 1 test was a success or a failure. If it were a success, then I would move to Stage 2. If it's a fail, then I would have the wire removed and cry into a pillow for the rest of my life move on.

2)Stage 2 would be the second surgery where, assuming Stage 1 were a success, I would have the permanent device implanted and hopefully have some relief.

I was concerned about the length of time between surgeries; that's a lot of time to need help while caring for two little babies. But Alex and I decided it would be worth it in the long run, and my wonderful parents agreed to help out, so we decided to go for it. I went in for the first surgery on April 8th. 

Hey, you know what the difference between a surgery center and a spa is?

Drugs.

I won't lie to you; it was like a mini-vacation being at that surgery center. I took off my clothes and snuggled up into a big, warm surgical gown that had some sort of built-in heating device, and then they gave me IV sedation. Not too much, just enough to make you smile and float around on cloud nine. Mama was doing just fine here. They wheeled my happy ass into the operating room and I laid flat on my stomach as they gave me even more sedation and a local anesthetic to numb the lower back area. I couldn't see or feel anything. I had my eyes closed and was no more concerned about my whereabouts than if I'd been getting a massage at a four star resort. Until I felt a few tingles. My doctor began asking me where I felt these tingles...

..my butt..

..my foot..

..um..crotch?..

..foot again?..

She was trying to find just the right spot to place the needle. Whenever she got the correct placement, she said, "Okay, now this is about to hurt."

This concerned me a little bit because 1) I was already pretty relaxed and hadn't felt any pain so far, despite her cutting into my back, and 2) a doctor warning me "this is going to hurt?" Eff. That can't be good. Before I could even murmer, "okay," I inadvertently clenched up my whole body from an overwhelming pain. It felt like someone was sticking a very large, very stiff straw into my back. And you know what, that's pretty much what she was doing. She had to insert the catheter in order to place the wire through. So that was the pain I felt. Unfortunately, I couldn't unclench myself. I tried with all my might, and it was just way too painful to unclench. I told her I couldn't, and she said, "Alright, we are going to put you under."

The next thing I knew, Alex was standing beside my hospital bed back in the recovery room, and I was trying to figure out where I was. I looked at my side and at the device connected to my back from a wire (yes, a wire was literally hanging out of my back. Very sci-fi). 

This is the beeper-like temporary device that connects to the wires in my back. These switches control how much stimulation I get and where it is located.

I felt a very strange vibrating in the bottom area. And then the soreness hit me. Now that I think about it, I have dealt with plenty of pain for the majority of my life, but I've never had an actual surgery with incisions. It's an odd pain; it hurts to move, and it throbs at times, but it doesn't concern me in the least because I know that it will go away soon. I will, however, take whatever meds they want to throw at me for it in the meantime. After getting a very generous shot of morphine, Alex drove the 90 minute trek back home while I dozed on and off.

The next couple of days were a blur. I was sore and couldn't do much moving, especially not with the kids, so Alex and my parents tended to them while I laid up in bed with books, Netflix, and a Vicodin Rx. Honestly, it was the best vacation I've had in a while. 

But I did feel out-of-touch from my kids, even just after a few days. That made me sad. I found myself coming downstairs just to see them and touch them, which really only created further problems, as they like to climb on me. And also, I can't stand being downstairs with mess-makers and not be able to get on my hands and knees and clean. That kills me. I'll start sneaking away to clean, and then I get in trouble and have to be sent back upstairs. So the kiddos spent much time in their pajamas fighting over who gets the last pretzel, dragging out every toy on God's green earth, and probably eating each others' snot or something.

I finally got the nerve up to look at my back, and I saw this. 

Two incisions and then another hole where the wire hangs out, connected to a beeper-like device that clips on to a belt. I couldn't tell much at first regarding success; I was still peeing a lot and I still had pain. So I waited. And waited. 

I finally began to decrease my bathroom trips from 30x to about 17x a day. That's something, I guess. But the pain itself wasn't much changed. I felt a slight decrease, but it wasn't what I was hoping for. After a couple more consults with my doctor, she told me that she wouldn't consider this procedure to be a success. I teared up. I agreed with her-- this wasn't the huge change I had prayed for--but this was my last shot. Admitting defeat would be giving up on my last shot and accepting pain for the rest of my life. I just couldn't do that. 

Right as I was getting ready to lose it, she proposed an alternative:

"Let's try a second Stage 1." 

We agreed to do the exact same thing all over again on the other side of my back. She said it's unusual to resort to two devices, but it's not unheard of. So I decided to give it another shot. Unfortunately, this adds two more weeks onto the timeline. I was frustrated, but I figured I'd come too far to not try another option. 

I had the second procedure done last Wednesday, April 22, and it was a repeat of the first. Now I have two more incisions on my back and two wires hanging out of the hole in my back connecting to two beeper-like devices that I wear on a belt loop yoga pants. 

Please excuse the tragic selfies, as I very rarely take body shots of myself..but here you can see that now I have two more incisions, two wires, and two external devices.

It's really annoying. It's quite literally a pain in the back. The incisions ache and itch, and my kids love yanking at the hanging wires, which pulls my back on the inside every time. Sometimes I clip the edge of our kitchen island with my hip, and it accidentally turns the device dial all the way up to 10, which feels like I am getting tasered with an electric cattle prod in the ass. 

Not that I really know what that feels like.

But there's a nice mental image for you.

I went to an appointment yesterday to discuss where we go from here. I am going to the restroom a lot less, but my pain hasn't decreased an exceptional amount, maybe 25% less. I don't necessarily think that the device is helping relieve the pain, but more that the device is distracting me from the pain. The sensation it gives is a strange, electrical, mild vibrating or buzzing sensation in the bottom half of my body. I don't know how to better describe it. So when the pain gets particularly bad, I turn the levels up and shock myself into distraction. It's the same concept of slamming your finger in a door to distract yourself from the pain of a broken leg. It's not the ideal technique, but it's better than nothing. 25% is better than 0%, so I'll take it.

We decided to go ahead and move on to Stage 2, where I will get the implants. The doctor will go into my back and create a pocket on each side of my lower back, and she will place the tiny devices into the pockets. I will have a remote control if I need to turn it off at any point. Kind of creepy, but that's life these days.

*This is not me. This is an example of what they will do to me during the final surgery. They will cut deep and make a subcutaneous pocket to put the permanent device in.

Meanwhile, my darling beasties have been hanging out a lot lately with their amazing grandparents and their loving daddy, as I can do very few of my mom chores. But Alex is finally back at work, and my parents have returned home this week, so I am on my own with them for now. And it's going okay. We're going to be okay.

Keep on keepin' on!