Turns out today’s procedure was not lucky number 5. I guess somewhere in there I knew it probably wouldn’t be the awesome, amazing fix I wanted it to be, but hey- a girl has to have hope right?
I mean, what would have been the point of doing the procedure at all with zero hope it was going to work ? I truly believe that if you tell yourself something won’t work-it won’t. So, I was smiley and hopeful all morning as I chatted with the nurses while they prepped me for the Venogram.
Somehow, while I was still mid procedure I knew this wasn’t going to be my fix-all. The procedure seemed too quick, too quiet in the room while they were working and taking photos. Before I was even off the table in the OR my IR (Interventional Radiologist) came over to tell me that he decided not to embolize anything. He also told me that there really wasn’t anything else he felt he could do for me, and that this was the end of the line for the vascular part of my adventure. Unless of course, the PCS should resurface.
I made it until the car. As soon as the doors were shut and I was safely away from anyone who might think I was crazy I took a deep breath and cried.
This is exactly what I didn’t want to do to myself. I didn’t want to get so excited about this that I would be sad when it didn’t work out. I didn’t want to feel lost, or without direction when the pain didn’t go away. I tried so hard to be cautiously optimistic and somehow, I still failed to protect myself from the broken heart I am dealing with now.
I am back to square one. Without the PCS on the table anymore I am without an actual diagnosis beyond Chronic Pelvic Pain Syndrome. That diagnosis sucks.
I mean, how do you fix something so vague? Basically, all this diagnosis tells anyone is that I have pain, chronically, in my pelvis. It doesn’t tell you why, or how to fix it, or even what to try to use to fix it.
The very thin silver lining here is that at least I know where not to look for answers anymore, which is almost as helpful as knowing where I should.
The even thicker silver lining here is that I have a plan. *giggles* I love plans. I am at my best when I have a plan for handling stressful things. Stressful things like hosting Christmas at my house, or the kids’ birthday party or, un-diagnosed chronic pelvic pain conditions. You know, stressful things that require plans.
Unfortunately this plan is a little more involved, and requires a new specialist and more medication trials, both of which require time. I have never been good at patience, or waiting when it comes to anything I want badly, and I am even worse at waiting for things to work when it comes to this pain. At least, I am not very good at it anymore.
I get stuck somewhere between thinking “You’ve already been in pain so long, what is a few more weeks while we wait for this to work?” and “I have already been in pain for so long, why do I have to wait any longer?” both thoughts roll around my mind simultaneously throughout the day if/when I allow them. Because the pain is always there, it gets difficult at times to stop thinking about it. But just like a song playing over and over in your mind, this too will make a person crazy, so I find ways to shut down those thoughts if I can.
This process is easier if I have a plan, or ideas and untried therapies in mind for myself. These untried therapies make me feel hopeful again, hopeful that eventually this pain will be in the background of my life, instead of in the foreground pushing me out of focus.
So, when I got home today I sent an email to my ever supportive PCP and we made a few decisions on what to do now. The plan isn’t anything drastic, and it is most definitely not anything that is going to work overnight, but it is a plan. And as we already know, I love plans.
So, even though Lucky # 5 turned out to be Not So Lucky # 5 I am going to bed just as hopeful as I was this morning when I woke up. Tomorrow is the first day of my next attempt at finding an end to this pain and it feels really, really good. I have high hopes that 2013 will be a good year for me, and the steps I am taking now are going to get me there.
Now I just need to try and find the patience to hang in there until it happens….