Changes

I have never liked change; in fact I’ll say I hate it. Whether the change is for the good or bad it still strikes fear in my heart. Similar to my husbands fear when I rescue a spider before he can squish it with his most menacing boot.

In the last week and a half there have been so many changes in my life. We moved out of our home of 7 years, we moved out of the 5 mile radius I had lived in my whole life, we moved from the woods and into the farmland, we went from a tiny bedroom to a gorgeous master bedroom with a fireplace, walk in closet, and gorgeous view, we have a TV in our bedroom for the first time, we suddenly have two barn cats, we have an electric stove instead of gas, fall season is in full swing, and I now have a water heater that lasts about 30 minutes instead of 30 hours.

Our old house, so many wonderful memories 

Our new house, so many possibilities  

Wow… what a list! Some of these changes have been awesome and some… the hardest adjustment I have ever had to make. Namely the shower. My beloved shower. If you have ever read my blog you know about my obsession with my shower. Most days I spend more time in there than any other room. I cling to it for relief of any pain, physical or emotional.

I thought I would be okay without it for a while until we could get some thing figured out at the new house. I also used to think I would be on America’s Next Top Model… at 5’3 and a weight that shall not be disclosed I think we’ve proved I’m a dreamer.

The first morning I woke up at our new house the familiar pain was present as usual but my in-laws were do any minute to help move the final load so I threw on clothes and ignored it. The day was very busy with the move and chasing a 1 year old all over the new place that he was determined to explore. All day the pressure increased and as thirsty as I was I didn’t drink a drop. Finally our beloved moving crew was gone and I headed to my new haven. As I released almost 24 hours of urine the pain exploded. I got into the bright red bathtub/ shower combo and sighed as the hot water eased the pain. Just when I was starting to be able to breathe again I noticed the water was not as hot and within minutes it was freezing. I stayed in there until my breast milk was almost frozen; the water had gone from perfectly hot to glacier before I knew it. The hot water had lasted a total of 25 minutes.

Each day that went by the pain grew worse. I was taking narcotics every day and wasn’t able to function until late afternoon each day. My bladder was never empty; it ached and burned 100% of the time. I was constantly waiting for the water to get hot again and, in the mean time, trying to come up with new things to cope. I tried taking quick but scorching hot showers but turns out I’m less like seared tuna and more like bacon… I need to be cooked low and slow. Baths barely helped the cramping and throbbing but not the burning at all. Heating pads helped the burning but made me almost lose control of my bladder.

So I just laid in bed watching the price is right and slept as much as I could to escape the pain. I turned my white noise app on my phone to the shower setting and though it did nothing for me physically, it soothed my mind.

Today I woke up and my pain was at a 9, quickly circling a 10. I got in the shower and instantly took vicodin but sure enough 20 minutes later I had to get out. I was almost in tears as I forced my protesting body out of the shower and into my cold bed. My mom came in and determined we had to do some thing. Next thing I knew my dad had booked me a room at a local hotel. Though I was nauseous from the meds and pain I packed up and headed right over.

So here I sit in the shower with perfect water pressure and all the hot water I could ask for. The room is clean and typical but all I care about is this shower. My body is relaxed and relieved for the first time in 10 days. I’ll be here until noon tomorrow then my Mom will pick me up and we’ll head to Seattle to see my doctor. I hope she has some answers but I’m not getting my hopes too high.

I’m excited about this new adventure, living on a farm a block away from a fruit stand, western wear store, and animal auction house. I love that we can walk down the driveway to feed a horse some apples. It’s awesome laying in my big king size bed watching TV with the fire roaring in the fireplace even when I’m in misery. I like living just minutes from a little town with a hardware store, candy shop, and family run restaurants.

On a walk to feed our neighbors horse. 

View from our bedroom!

My Mom just called, it sounds like I’ll have my new water heater by Friday at the latest… it’s the price of a fairly decent used car but I need it. I need a shower with hours of hot water. Like a blind man needs his cane. Like an amputee needs his prosthetic leg. Like some one who can’t walk needs a wheelchair. Like a diabetic needs their insulin and needles. I have interstitial cystitis and I need a shower.

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

Allow me introduce myself... oh and meet my archenemy!

Welcome to my blog... my guess is you're either reading this because you know me and love me, or know IC and hate IC! 

If you're in the know IC crowd let me introduce myself…

Hi! I’m Deni… I am a 24 year old, wife, mother, daughter, sister, granddaughter, in-law, cousin, niece, friend, and patient. That’s right I said patient… as in “what is the patients date of birth and symptoms”. Not the kind of patient that means I can actually watch the whole deliberation at the end of The Bachelor, because I’m definitely not that kind of patient. My favorite things in life are spending time with my family, watching my 7 month old son grow up, photography, reality tv (Hi my name is Deni and I'm addicted to reality tv... Hi Deni!), playing games, cooking and baking, spending time at my Grandparents cabin, reading, and writing!

For those of you know me but not my old nemesis interstitial cystitis let me introduce you, here is the definition brought to you by The Mayo Clinic website.

“Interstitial cystitis (in-tur-STISH-ul sis-TI-tis) is a chronic condition characterized by a combination of uncomfortable (UNCOMFORTABLE! I bet a man wrote this… sorry keep reading) bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain. While interstitial cystitis — also called painful bladder syndrome — can affect children and men, most of those affected are women. Interstitial cystitis can have a long-lasting adverse effect on your quality of life. The severity of symptoms caused by interstitial cystitis often fluctuates, and some people may experience periods of remission. Although there's no treatment that reliably eliminates interstitial cystitis, a variety of medications and other therapies offer relief.”

The symptoms on that same website were a bit more specific than some of you would care to read but to paraphrase they are: chronic pain in the pelvis, a persistent and urgent need to urinate, and frequent urination of small amounts. Also ic can involve retention of the urine and incontinence (Which is so ironic, right? You can’t go when you want to but you do when you don’t want to!) Anyway, the symptoms are very similar to those of a urinary tract infection… but chronic. A lot of what our bodies do involves the nerves and the bladder is no different. The nerves are supposed to send a message to your brain when you need to tinkle but for some reason those of us with IC have a crossed wire or two. So we either think we need to go when we don’t or we don’t know we need to when we really do.

So don’t call me Webster but that was my definition of interstitial cystitis… I’m not sure how medically accurate that was but hopefully that helps you understand a bit! 

This blog will follow my life and reveal my daily challenges of trying to be a normal, stay at home wife and mom while constantly changing from my apron into my armor to battle the fire breathing dragon that is my IC. I hope that through this blog I can provide an update for my friends and family, knowledge for people whose loved ones battle this disease with me and most importantly comfort for my fellow IC dragon slayers!