Changing my life...

So my last post was about the visit to the progressive doctor. I felt I had more musing to do about it, so here goes...

When I went to the clinic I think I had reached the perfect time to go. Any sooner and I might have thrown a file at the doc's head. Basically, part of being an IC patient is going through the stages of grief- loss of your former life and health. What you love is snatched from you. It's pretty easy to feel like a victim.

You don't deserve to feel this way. No one understands. There are no answers.

Hope

So, I know this blog is often overlooked. I live a very busy life, and my medical conditions have settled some, on the whole. I sometimes feel guilty for feeling as "good" as I do.

Anyway, I felt like an update was in order, as for the first time, in a long time, I have hope.

It started with a mild rant on Facebook. A friend posted about a progressive doctor, if I was interested. I was, actually. I later learned she worked for him, and after much discussion, I decided to go to a consultation with him, and find out what he suggested.

The consultation wasn't covered by my insurance, and so we had to pay up front. With the investment made, we knew we had to go all in & do what they recommended to try to make this work!

I went to see him on Tuesday, and was impressed, and awed, by the fact that he might be able to help. Not "Here's another pill to add to your list" help, but REALLY help. As in, "we re-set your body & you may not have to live in continual pain" help!

What the doctor ordered!

About 6 months ago I stopped going to our support group meetings. Mainly, for two reasons- One, I felt pretty good most of the time, and being there made me feel sorry for the people in pain. Two, because the group is at a Urology group different from the one I use for IC treatment, and I decided I was tired of hearing people slam my doctor.

At first is was just a mild annoyance, but it started to add up, and it made me start to think negatively about my Urologist.

Thankfully, my husband was there to be my sounding board, and we were able to figure out why I was annoyed with the meetings, and why it was better that I not go. We also discovered that my doctor has helped me so much with me just following her advice, and that it was worth continuing to use her for my Urologist.

"Pain is your new normal"

Sounds like something your sergeant would say during boot camp, right? Well, it has sort of become my motto these past few years! I told my Physical Therapist what I meant, and she got it. My pain threshold has been raised (or lowered, depending on how you look at it) so that I am used to living in the level of pain that I have on a daily basis- it is my new "normal", the new "me".

I hadn't really noticed how used to pain I was until a couple of days last week I realized I had spent a couple hours with NO PAIN (at all!!) and it didn't hit me until the pain started up again. Wow, I wasn't in pain! That's kinda cool! (It's also kinda weird, as it feels like something is wrong with me!) Made me realize how much PT has helped me, and how far I've come since being diagnosed. So I thought I'd do a post about how I came to this point in my life.

"Tell me where it hurts..."

"Everywhere!"

Being diagnosed with Interstitial Cystitis is difficult. Basically it is first & foremost not even recognized by some doctors as an actual disease. In fact, 20 years ago it was called the "hysterical woman" disease!

Let's start at the very beginning...

A very good place to start.

I lived for almost 28 years without Interstitial Cystitis. In fact, up until June '08, I had no idea IC was even a real disease.