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!
 

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!

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- naomi@naomikarth.com 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!!

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.

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!

"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.

Rant, in the key of P major

Why is it that the one thing you want is always the one thing you cannot have....

My husband and I cannot have children. Aside from some rather serious medical issues, and a couple serious fertility issues (All my fault, of course)... there is also the "if you get pregnant while on this drug your baby will have three legs" issue... and the "I'm literally allergic to my husband's sperm" issue. Sometimes it feels like God is screaming "Don't you even dare try!" at us.

Awareness starts with "U"

Ok, so I can spell (I did watch my share of Sesame Street) and I do know that technically "Awareness" starts with the letter "A"... But, the kind of awareness I'm talking about does start with you.

Let's talk about S-E-X!

Ok, so right now, I'm going to give you fair WARNING. If you have no desire to hear about my sex life (and who could blame you) walk away NOW. If you're my brother or my mother in law, and you really don't want to know this... if you are one of those people who doesn't believe in TMI... just stop reading, hit the back button, and get on with your life!

Weeding your friend garden!

There comes a time, as an IC patient, where you will face the obstacle of unsupportive friends. If you haven't yet, good for you! Unfortunately for me, this accompanied my diagnosis, and only about a year later have I been able to overcome the feelings that I was left with.

My husband has been amazing through this all. Not only does he love me at my worst, but he has shown me what a good friend should be like- kind, caring, supportive, and unselfish.

I was talking with a good friend I've made through our local IC support group, and I told her that going through my friends was a bit like weeding my garden. She laughingly replied with "Except some are exactly like weeds & just keep coming back!" How true!

FLARE.

I'm in a horrible flare today, and I thought it might be useful to use this time in which I can't do more than just sit, to tell outsiders more about what living with IC feels like.

For me, living day to day with IC equals quite a bit of pain, but as I have a high pain tolerance, it isn't such a daily struggle. Most of the time my conditions are at the back of my mind, and as long as I can keep hydrated I can function fairly well, although take more frequent trips to the restroom than normal people. When I get a flare, however, things change... my entire life is turned upside-down. It all revolves around my bladder, and the horrid spasms that are causing it to malfunction.

A flare starts out like this... I feel like I have to pee. And not just pee, but pee like an elephant would! So I race to the bathroom, go a teeny-tiny amount, and suddenly the pain gets WORSE. Now it feels like I have to pee even more than I previously did, plus I can now feel spasms in my bladder and also in my urethra. Joy be mine. These spasms are much worse than anything you would feel during your period cramps, for example. They feel like someone has taken glass & mixed it into your water & you are now attempting to pass shards of it through your body. It burns & it aches & sometimes it just feels like it will never stop.

Diagnosis Aftermath!

So, you've just been diagnosed with Interstitial Cystitis...

What do you do now?

"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.