Monday, September 24, 2012

Awareness

September is IC Awareness Month! We are dedicating this month to our enemy that plunges us into suffering every day. The more people that hear about this dreaded disease, the more likely some brilliant scientist will take it on as his personal goal in life to find the perfect treatment for us.

I am just a victim of the disease, I am not a medical genius nor do I have millions I can donate to help spread awareness and continue research. All I have is my words that I use to write this blog. I have reached people who have never heard of IC and many who suffer alone with IC every single day. I want this to reach even more people from all over the world! IC isn’t prejudice and people all over suffer with this debilitating disease.

Just recently I got an email from some one in Australia who was desperately seeking support from others in her neck of the woods.  If a patient can’t even find one person who also has IC, how can she find treatments and a doctor who will care for her?

I want IC to be known and dreaded. I want people to know exactly what we suffer with when we tell them we have IC. I don’t want to us to explain it. I want to hear about IC Walks all over the country and see that beautiful teal IC support gear in stores.

The pain from IC is compared to the pain from cancer frequently. Obviously we don’t have a death sentence but we do have a life sentence. If nothing changes in the research and treatment world we will suffer with this for the rest of our lives. We live in pain instead of die in pain. We need just as much awareness and support as cancer!

Please share my blog so that people completely unaware of IC can be informed. If this is the first you have ever read of IC, take a minute and read into it. My first couple blog entries really detail what IC is and how we all suffer differently. Then share it! Each person that hears about IC is another score against our enemy.

Thank you for helping me spread IC awareness. This is personal. This is my life. This means the world to me.

Find out more at www.icawareness.org

Monday, September 17, 2012

He and I.


I had a bad vulvar vestibulitis flare up today.

I feel like I have a hundred paper cuts all over my lady bits.

I drank almost nothing today to keep my acidic pee away from the cuts.

I tried to hold my urine as long as possible.

It didn’t work.

I wet the bed.

I wet the very bed my husband was asleep in.

I woke him up and broke the news to him.

He reacted with 100% love and sorrow for my suffering.

He was still half asleep.  

He helped me get our bed resituated.

He slipped quickly back to dreamland.

I am in so much pain but I am so blessed by this husband of mine.

I don’t need gifts or special date nights or flowery compliments.

I just need my husband to love me in spite of wetting our bed.

He does.

I am happiest with him. 

He is happiest with me. 

I am blessed.


Thursday, September 13, 2012

My jalopy of a bladder


My jalopy of a bladder

I’m a very visual person… I use metaphors. It’s what I do. So here we go.  

If a brand new cars check engine light comes on you are alerted and immediately check the problem. You take it to the shop they find out the issue and take care of it in no time. Then there’s an old, beat up car that has been around the block a few times. If its check engine light comes on you try to ignore it for a few weeks… then you realize it’s not acting right and eventually you take it to the shop. You wince as the mechanic lists off the problems and the total it would be to fix them. What’s a girl to do? I know what I would do… kindly ask the strapping greasy fellow what is the minimum I could fix to get my ol’ heap back in action.

In this analogy my bladder is that beat up car. It has dents, dings, and runs but only barely. My “check engine” light is almost always on so I have learned to not freak out any time I get a flare. Last week, not only was my check engine light on, my sad little bladder car would barely start. (This analogy has maybe gone too far? I hope you’re tracking.)

It always hurts when I pee. Literally every time. So when I sat down to go on Friday the burn I felt was expected and familiar but the stench I smelt was not. (I actually thought it was Titus’ diaper in the trash next to the toilet, sorry for the details… I over share, accept it.) Then I got in the shower as I always do after I tinkle to try to alleviate some of the pain and pressure. This pain was off the charts and every time a tiny bit of urine escaped that smell and pain accompanied it.

Then I realized the pain was a little different… the pressure and cramping was worse than ever. I described it to my Mom by saying my pee felt “thick”… at some point I’m pretty sure I said it felt like I was peeing a milk shake.

Being the scholarly type that I am I added up all of these signs and deduced that I perhaps had a bladder infection. I had Zach pick up an at home UTI test and right away it showed blaring positive results. I called my doctor, she called in a prescription for antibiotics and sent me to a lab to have the urine tested and the infection verified.

The antibiotics did nothing. I was running to the bathroom every few minutes and each time felt worse than the last. Not even my beloved shower helped… so I spent the weekend on narcotics, hovering under a heating bad and trying to ignore the pain as I got every thing ready for my sons first birthday party! The emotions and Mommy determination took over, the party was amazing but the minute it was over… my adrenalin was used up and I was down for the count. 

My doctor called Monday and confirmed that I do have a bladder infection and I felt pride in my diagnostics. I should work for Gregory House! 

Now here we are almost a week later, the infection is still raging, my lower back is aching along with the rest, and my body is exhausted from fighting the good fight. I am ready for this poisonous urine to pass out of my body so I can get back to living with just IC. I feel blessed by my usual 5-8 pain rather than this intolerable debilitating 10 pain.

I’m headed back to the lab tomorrow for another urine culture and hopefully we’ll get some answers soon...

So! Here is a tip for my IC girls… any time things feel different go with your gut instinct, it’s usually right! The nice thing about an infection is it’s totally treatable, no need for extra suffering! Also, don’t forget that Azo turns your urine neon orange because when you lose control of your bladder in the kitchen in front of your family it’s best to be prepared to explain!

Tuesday, September 4, 2012

You blink...


In the past 25 years of my life people have always told me how fast time goes and I honestly didn’t believe them. I felt every year to its fullest and was always ready for a new year to come.

Suddenly I am sitting here and like a punch to the stomach I realize I am 25, a wife, and I am the mom of an almost 1 year old. It has gone so fast.

This year has been one of the hardest in my 25. It had so many blessings and joys but also some of the most devastating and seemingly impossible moments. So of course I start sobbing as I realize how fast it’s going and how my little baby is going to be off to college before I know it. (Ask any parent, that’s what they all say!)

As I reflect on the last year and the many hardships I feel like it was never THAT bad. I mean it was definitely hard having three surgeries, several infections, sicknesses, and IC while having an infant but I hardly remember those. I remember falling asleep holding this tiny baby that came out of the very body that betrays me every single day but gave me the best gift I could have ever imagined. I remember the excitement of him lifting his head, rolling over, crawling, and saying mama. I remember the pride as I watched him make people smile. I remember the love I felt as I watched my husband become Titus’ perfect Dad.

All I want to say is, I know it is hard right now. We struggle with IC every day. It seems to be the only thing in our lives. BUT, try to enjoy the other things in your life. When the pain is less and you’re not drugged to high heaven, enjoy every moment you can so that when you look back you remember a life that you lived not what you missed and the pain you endured.

It’s going to go so fast. You may be in the exact same place in your IC in a year but other things will change. Some will be gone and new things will blossom. We have to live life outside of our IC, we can’t become our IC. 

I am the Mom of a baby for 8 more days. Then he will be a big 1 year old boy. He will be walking soon and will become his own little toddler self.

My IC is bad right now but as soon as it eases I’m going to get out of the shower and play with my son. We will finish planning his 1st birthday party and enjoy every moment that we can because this week of celebration will be gone as fast as all the other 51 weeks of his life have.

I usually feel cursed by my IC but today I feel blessed by every thing else, especially by this special, healthy, happy baby that is turning into a lovable, friendly, attention seeking, hilarious little boy.