Wednesday, July 11, 2012

Hope for the hurting

I went in for my follow-up consultation with the progressive doctor yesterday. I was able to report to him, before we went through my test results, that I feel better (much much better) and have even lowered my Elmiron dose! (I'm taking only 100 mg a day now, and skipping doses without noticing!)

I've also started eating citrus again, with no negative effects. I love limes in my water, and I have an occasional orange!

He asked me why, and I think it was a combination of getting a strong source of protein and iron, and eliminating all grains. In fact, when I would eat a gluten grain, I would even start to feel a little sick. So my body is telling me what to avoid!

Saturday, June 23, 2012

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.

Thursday, June 14, 2012


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!

Friday, April 13, 2012

IC Sisters- Sue

I'm starting a new direction with my blog. I either complain on here or come do a post when I am flaring... and I wanted to try something different. I'm doing interviews with fellow IC patients & posting them on here. Sue was brave enough to be the first! (If you are interested in being interviewed, email me- for details!)

 I wanted to say a couple things about Sue before I started her interview. Sue is one of the very first people I met with IC, and we met via FB. (There is a huge community of IC patients on FB. You usually only need to meet one, and suddenly you'll know tons!) Sue is a big part of my inspiration to spread awareness, and as you read her story you'll realize why- she deserves a cure, she deserves to get her life back! We all do! And it is just plain frustrating to hear about patients being treated they way she has by doctors- people who are supposed to care about us and our health!!

Thursday, September 8, 2011

Vulvadynia SUCKS.

I hate having vulvadynia. I hate it more than IC times like a billion.

I can handle IC. Peeing every 20 minutes. Feeling like you're peeing glass shards. Spending every spare moment hugging a heating pad. Being in a bitchy mood EVERY single second of the day because your life sucks. Yeah, I can actually handle that. I've done that.

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.

Saturday, March 26, 2011

Physical Therapy

I recently finished a round of physical therapy & have since had several IC patients ask me about the results, etc. I decided to do a blog post about it to help answer some questions & break down what all was involved. I am only referring to my specific therapy regime, with my specific therapist, and cannot guarantee results or methods. Having said that, I personally believe that each IC patient suffers from PFD- Pelvic Floor Dysfunction, and I believe Physical Therapy to be a huge step in recovering from PFD.

I decided to start with a FAQ, then I'll follow that with a break down of what we did at each session of PT. I hope this helps those looking for answers, and gives anyone reading this a better idea of what living with & treating Interstitial Cystitis/Vulvodynia is like!