Day 71: Not So Lucky # 5…

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.

It sucks.

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.

Almost.

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….

4 thoughts on “Day 71: Not So Lucky # 5…

Add yours

  1. Hello,

    I read some of your posts; I’m sorry you have to go through that every day. I can’t handle some cramps every month, I can’t imagine how you feel with this condition every single day. I have a friend, she 35 or 36 years old. Your blog reminded me of her because she used to have this condition for many years…your description of PCS matches what she described…anyways, three years ago she got her uterus and ovaries removed; the doctors tried everything but she never got better and they were afraid it was going to turn into cancer. She is doing well now, she feels a lot better, no more pain. She used to get very depressed because of the pain, back problems, and all the other things in her life that were affected by her condition. Have the doctors offered you that removal as an option?

    Don’t give up. I hope you find something that helps you soon.

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    1. Hi Samantha! Thanks for reading my blog, and I am sorry to hear about yout friend. It can be exhausting and I am happy to hear she has found relief. I did have my uterus removed in August of this year, though due to my age I kept my ovaries and cervix. I am starting a hormone therapy today that should help surpress the pain if it is from my cycle still. As always, I will keep everyone posted. Thank you again for taking the time to read, and offer a suggestion for relief.

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      1. Hi Elizakate21, I am glad that you are starting a hormone therapy. I guess you need to keep a special diet too? What have the doctors recommended as far as your diet? I know aloe vera does wonderful things for people. I have a thyroid condition and aloe vera has saved my life. I eat the inner fillet, I drink aloe juice too. Have you heard of it? It is one of those miracle plants. Well, I just try to use natural and herbal remedies, along with my meds, as long as they do not interact negatively. I hope you feel better soon, I really do. Thanks for your response.

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  2. Plans do make all of the difference, don’t they? I have tests coming in January, and it is making December a much better holiday month for me – just knowing there is still hope on the horizon. I feel like it is a series of blind dates, all failed so far, but I’m gunna put my red lipstick on and try again anyway. Good luck with your new plan, I truly hope it brings you healing.

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