Between a rock and a hard place!

When we moved almost three months ago I knew it would be an adjustment but I had no idea the life changes that it would bring. Feel free to browse back to my "Changes" blog for more info but trust me... There's been even more adjusting than I knew then. The biggest one is something I would have never expected. Not the smaller kitchen, the lack of trees or even the constant cow poop smell! It has been the weird shaped tub!

If you’ve read any of my blogs you know that I deal with my interstitial cystitis pain by sitting in the shower for hours. On an average day I’m in there 3-4 hours but on bad days it’s more like 6-7 hours sitting in the shower. So you could imagine how a faulty tub shape could affect me. For some reason the way the back is slanted causes me to slip down. I constantly scoot back up but then minutes later I find myself half sitting/ half laying. So then all my weight is centered on my tail bone rather than my booty that God carefully padded just for this occasion. 

If I'm in there for a short time it doesn't bother me much but after a couple hours the pain in my back and hips is almost as bad as the pain that's causing me to be in the shower to begin with. So lately I've been turning to my trusty pain meds and getting out of the shower before the back pain can get too bad.

However... Just over a week ago I took my new pain meds called Nucynta, see “Crack is Whack” blog, and suddenly my body was covered in a rash, my throat was closing and my chest was tight.

My mom raced me to the ER where they pumped me full of antihistamines, prednisone and had me do two breathing treatments. With that scary episode over I vowed to never take that poison again. Two days later I took Vicodin and I had the same reaction. I took Benadryl, my prescribed prednisone and used my new inhaler but the fear of having a reoccurring episode sent me back to the ER. They said I had done everything we could do and that it was probably just the Nucynta still causing trouble.

After that I decided to not take any pain meds for a while... Well that lasted 4 days. Then the pain was excruciating in my back, bladder and urethra so I gave in and tried dilaudid. Same reaction. It was much milder than before but still the same things. I did the same protocol and felt better in no time. 

The next day the pain was even worse and I was desperate for relief so I tried dilaudid again. Same deal. 

So, after 4 reactions in 10 days one would maybe assume that I shouldn't take any pain meds. So what do I do now? I'm in the midst of a horrible flare with no chance of relief in sight. So I sit in the shower, which causes severe back pain. I'm literally between a rock and a hard place. 

Yesterday I was in the shower for 12 hours. Can you even imagine?? Sitting in a hard tub, being drenched in hot water, in excruciating pain, for 12 hours? Today I was in there for 8 hours and took Benadryl to just knock myself out so I could just rest my weary, aching body.

I'm really scared that this is my new existence, I'm in so much pain and I'm just lonely and bored out of my mind! 

I have an appointment with my doctor tomorrow and I'm also planning on picking up the vaginal Valium suppositories that are super expensive but at this point… I would sell my sister for some relief. (Not really… don’t start a bidding war! She’s my sister!)

Sorry to have my first blog back sad and discouraging but it's the real deal. I had been fighting with myself on what to write my next blog about but I just had to be real and go to the root of it all… IC sucks!

Crack is Whack

I grew up in the dawn of this new century when the dangers of recreational drugs were starting to surface. You couldn't go a month in health class without being shown diagrams and statistics of the horrible life you would surely lead if you even sampled any of this illegal street fare. 

I remember debating with a fellow 13 year old about marijuana. I couldn't tell you a pot plant from a dandelion but I fought my case with conviction that smoking the poison would surely ruin life as you knew it!

As we got older the drugs we were warned against suddenly got equally deadlier and more accessible. We were signing pledges to not sniff aerosol cans, overdose on cough medicine, or mix up a big ol' batch of meth with household cleaners. 

All the while I was at home popping narcotics to ease the pain from my interstitial cystitis. I’m sure high school health classrooms everywhere now have life size posters with giant red slashes warning this decade’s kid against the very drugs I was regularly taking…  I should point out, after taking heavy narcotics for 10 years I still don’t get the allure of taking them just for fun…

My pain meds have always been closely monitored by my mom. (She must have heard the thing about taking one pill and next thing you know you're living on the street next to a hooker named Davenport.) We had long discussions weighing the good and bad before every dose I took. She never let me stay home alone when I was "under the influence" and she kept my medicine bottles in her bathroom. It wasn't that she didn't trust me... It was just that... Well I'm not sure... There was definitely a good reason. 

Over the last 10 years and 20 surgeries I have been on Vicodin, Percocet, Dilaudid, Fentanyl, Morphine, and even had an Opium suppository before a DMSO treatment. Thanks to my Mom’s incessant lectures and completely thought through decisions I learned to respect the drugs, not to take advantage of them, to use them sparingly and only when absolutely necessary. 

Five years ago after an especially treacherous surgery, I stopped taking pain meds suddenly when the pain seemed better and I had three days of intense withdrawals. Hallucinations, vomiting, shivering, sweating, the whole shebang. I have also learned to wean. 

Through all the years of taking different pain medications I had never found my perfect narcotic match. The drug that I could carry around and take in case my pain appears out of nowhere and a shower is not accessible. The pill that I could take without taking an antinausea pill or vomiting. The medicine that takes the edge off but doesn't make me fell fuzzy and drugged. 

Until now! It’s called Nucynta… Of course it's pretty expensive and so new that there isn’t a generic yet but it's magical and totally worth it! It doesn't make me nauseous or constipated. It helps the pain without sending me directly to sleep. It does make me feel a bit drugged but I can manage to still do most things. (I haven't tried driving while on it yet, for the safety of others!)

I had another cystoscopy with hydrodistention and Botox procedure on Monday and it’s been an expected hard recovery. The pain in my urethra from the catheter has been excruciating and my sad bladder just aches from being poked, prodded and literally stretched beyond capacity! BUT, thanks to my new wonder meds its actually been tolerable.

I am in no way advertising the glories of narcotics! I hate them. I take them as seldom as possible. Unfortunately there are times in an IC captured life that pain medication is a necessary evil. This particular blog is really just for my fellow IC sufferers that struggle with pain as a main symptom. Debating the merits of narcotics isn't an enjoyable topic for me but I have to share the news about this drug in the hope that it will help others the same way it has helped me.

Side note… I was telling my sister about this blog post and she asked why I named it Crack is Whack. I replied smartly that it was about drugs. She then informed me crack is a specific type of drug… who knew? I thought crack was just a term for drugs… Apparently I didn’t pay that close of attention in Health class… Anyway it’s still a fun title…

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

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.

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!

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 1^st 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. 

Interesting Interstim

In 2004 when I had the first interstim test I was excited about this brand new uncharted territory. I felt like there were limitless possibilities. Little did I know at the time that what was supposed to treat my IC would become just another chronic problem.

Over the years the interstim has given me my best IC moments and my worst IC moments. It has helped more than any other treatment but has also caused endless frustration and extra pain. I actually have bilateral (two) interstims and after I got my second interstim my symptoms were practically gone. My family even threw me a “Deni is Better” party! On the other hand that only lasted 3 months and I have had 12 surgeries JUST for the interstims. So when other IC patients ask my opinion on the interstim or bilateral (two) interstims I feel so conflicted.

Let me just remind you that I am not a doctor or any thing relatively close, I just know from experience and some research before I began the process. From what I can understand the interstim is a little device that sends stimulation through tiny wires called leads to the nerves connected to the bladder. The hope is that the stimulation will help control the bladders functions by some fancy magical technical trickery. It has been known to eliminate or at least minimize incontinence, urgency, frequency and some times even pain. 

There are several leads that are all positioned slightly differently as to give the patient options. After the surgery the doctor programs the new doodad to customize the system for the individual patient. They can change the speed of the stimulation, the pattern and which leads are working with what lead.

Here’s where my problem arises… the leads are placed so delicately that if they get moved even just a tiny bit it changes the stimulation drastically. Ideally I would feel it in the perineum area but if the leads move I can feel it any where from my back to my toe and any where in between. So when that happens they have to make a voyage back into my body through the same incisions and fix every thing just so I can potentially have relief until it inevitably moves again.

If you are going to live in a bubble the interstim is perfect for you! However… I got the interstim when I was just 17 while trying to live a normal teenaged life. Now I am 25 trying to live a normal wife and mom life. I have never been super active thanks to my IC beginning at the tender age of 13 but even with my relatively sedentary life its still extremely inconvenient to have a foreign object in my lower back. Here are some pictures of my interstims, you could imagine why it would be hard to keep them save when there in such a vulnerable, unprotected spot. (I can't believe I'm posted these... Proves that I am committed to this blog!)

My masterpiece... don't mind the pudginess. 

My bulging left interstim 

My right interstim doesn't poke as much

Another one of my left... not cute. 

I’m sure you’re wondering what types of incidents would cause this movement… for me it has been endless stupid things… My most shameful time was when I went on an innertube ride behind a boat, after my husbands warning, then hit a huge wave that sent my interstims into spasms. I’ll admit that was my fault but many times it hasn’t been. The interstim battery unit kind of sticks out as you can see in the picture of my interstims below. Once I caught it on a door handle which pulled the interstim and therefore the wires too. One time I fell down the stairs. Another time I got into a small car accident that moved every thing for some reason. Then after my pregnancy the wires moved, after I lost a bunch of weight the wires moved. Recently I was crouched down and stood up quickly the caught my interstim on this thing in the picture. 

Instantly I felt shocks on the inside and swelling at the actual site of the interstim pack. I turned my interstim off with my remote and iced the site immediately. Then this weekend, not two weeks later, I was wearing a dress at a comedy show and bent down ladylike to pick up my stuff off the floor and quickly stood up and caught my right one on the wooden arm rest causing the same reaction. However this time I was in Seattle, an hour away from my remote. I suffered the whole drive home feeling like a naughty yapping dog with one of those collars. I was being shocked all over my perineum area and my back ached where the impact happened.

So now I am still sore from being electrocuted, my back still hurts if I turn the wrong way and my IC is angrier than usual with both interstims off.

Last time I went to doctor my doctor x-rayed and checked my left interstim (see blog “It’s shocking”) and determined it was completely out of place, this was even before the TV tray incident. I had them both so low I couldn’t even feel the therapeutic taps but now they are both completely off and not to be pessimistic but I’m preparing myself mentally for my 13^th interstim surgery.  

In summary… the interstim, like any treatment is a gamble. However in this gamble you are putting a lot down. You are adding machinery to your body, the wires may break, the wires may move, you might hurt the site,  it might not even help at all. On the other hand you also might not pee your pants every day, you might be able to make it to the toilet, you might only have to pee 10 times a day, and best of all… it might even ease some pain. I decided it was worth the risk and continue to make the same gamble every time I head for the OR to get it updated and corrected.

I feel like I am still leaving a ton out but if you are considering an interstim and have any questions please don’t hesitate to ask!

https://www.facebook.com/how.ic.it.by.deni

Request.

My husband likes to reassure me by telling me that IC is my job. If I don’t get any laundry done or don’t cook for a week he just tells me, “Babe its okay, you’ve been really busy at work”. I know that sounds crazy to a lot of you, especially those of you that have full time jobs where you get up at a certain time, have a dress code, drive to work, only have two little breaks and one lunch break, work all day, then have to drive home, and attempt to live life in your off hours.

You would be shocked to know how similar it is… except you get to drive home and be done for the day at a certain time. Even better than that you get two glorious days to do whatever you want. Oh, and you get paid. (Refer back to “The Grass is Greener blog, I’m trying not to compare… just using this as a metaphor).  

This is where today’s blog topic comes in… I have a really busy couple months ahead, like probably some of the busiest months I’ve ever had in my life. So I would just like to request a few days off. Actually if I’m going to try I should really go for the next 2 months off! Surely I’m due 2 measly months off.

The next several weeks would make a healthy, childless, jobless woman stress so you could imagine the panic rising every day. I have a minimum of 10 different days coming up that I have to be out of the shower and active. No choice, no backing out. If any of you know me well you know that’s super scary for me. I like a plan b, I like an out in case I am hurting too bad to function. Nope not this time. People are relying on me. I'm celebrating my little brother's 16th birthday, my Dad's birthday, going to Portland to see my in-laws, Titus' big 1st birthday party, Titus' actual birthday, Titus' one year pictures and then we are moving. Oh man I'm just stressed typing it out... 

There are also days in there that I have things I really need to do, they potentially could be rescheduled but at some point I need to get ready for these crazy 10 days!   

So… the only thing I have left to do is pray my guts out to the big boss man and put in a request for a few days off of pain, incontinence and urgency. I really need this, not just for me, for my family who is counting on me to be a normal sister, daughter, wife and most of all… Mom. 

The craziness begins in 7 hours... 

Bladder Instill (I have no catchy title, my creative juices were drained out of the catheter)

 “Just try to relax… it will hurt much less if you can just relax your muscles.” That’s what the nurse tries to tell me as she pries my legs apart.

I respond: “I’m trying. There, am I relaxed?”

“Kind of…” is all she says.

She proceeds to prep the catheter and medicine then says, “okay ready? Take a deep breath” but my body freezes solid as she inserts the catheter that she promised was the smallest one she had but felt like she was mistaken, it felt huge and covered in blades. She repeats that I needed to breathe and relax but instead I scream, “I can’t do it!”

The nurse forges on and the waves of nausea almost knock me over as the pain thunders on. I hear the urine dripping out of the catheter and she said, “I just need to empty your bladder first.” Tears puddle in my eyes as I silently pray for it to be over.

Every time the catheter moved a tiny bit pain rippled through my body like after effects of an earth quake. Finally my bladder was empty and she injected the lidocaine which burned a little bit but I gritted my teeth and desperately asked “is it going to hurt to take it out?”

I couldn’t look at her but I feel like she probably smiled and answered, “It shouldn’t, at least not as bad as going in. Now shift your hips back and forth to mix it all up.”

As I did the hula while lying on the table with a tube hanging out of my chee chee the pain soared. I felt each twitch of the catheter. Finally the nurse told me to take a deep breath then to blow it out.

As I was doing this she pulled the catheter out and my body literally quivered. It hurt just as bad going out for the record, it was just faster. I laid there with my legs still up in the air and the little paper sheet not covering any thing.

Physically exhausted and shivering from the pain I contemplated allowing myself to black out but fought the pull.

Finally the nausea and dizziness subsided, though the burning lingered, and I tried to sit up but having any pressure on my violated region was too much. I gingerly got down and slowly got dressed. It was over. Now all I had to do was wait for the soothing liquid to calm the fire in my bladder.

This was my first bladder instill in years, my urethral pain had always kept me from repeating the misery but finally my bladder pain was so much that I thought I should attempt it once more. Now here I am 4 hour and a vicodin later and I’ve decided to wait another 10 years to try again. The pain from the procedure is not as intense as earlier but barely tolerable. My bladder feels numb like it’s full of ice water instead of poisonous urine and I’m sore head to toe from being so tense.

Anyway, it was worth a try! If any one needs me, I’ll be in the shower trying to wash away the pain and horror of the day! 

Coulda, shoulda, woulda....

This is totally random but I was just thinking, I can’t imagine having my arm amputated… there would be certain things I definitely could not do. No matter how much I wanted to, it wouldn’t be a choice it would be fact. For instance I definitely could not knit, play the trombone, jump rope, or play quack diddly oh so.

My disabilities aren’t quite as restrictive for sure, which I am very thankful for! There is nothing that I “cannot” do… well at least not due to my IC, my husband doesn’t call me 5 lb muscles for nothing.

Sure… I “could” do all those things… I take for granted the fact that I “could” knit or play the trombone… if I wanted to learn and ya know, be patient.

There are, however, still things I should not do… Things that would cause an instant flare and make me pay for days. Even though I have had IC for 12 years I am still learning what are things that I shouldn’t do, in the past I have learned I can’t ride a jet ski, an innertube behind a boat, ride a horse and this weekend I learned a new thing I definitely should not do.  

What I want to know… if your friends jumped off a bridge, would you? What if there was a bungee cord? What if that bungee cord may or may not be just a couple inches long? All your friends say, “come on! Whats the worst that will happen? You’ll just get a tiny bonk on the head, perhaps a mild concussion! Let’s do it!”  Okay…

So there we go. We launch off the bridge only to watch the ground hurtling towards you, waiting for the reassuring tension to catch, but… it was just a tiny bit too late. You limply swing from the bridge. You made the wrong decision.

All this is to say… I should not, ever, ever ride a motorcycle. My husband got a Harley Sportster about 6 months ago and I have now attempted to ride with him 3 times.       

Each time it not only causes severe pain minutes after we leave but the pain of having my entire body weight resting on my sensitive regions lasts for hours, if not days.

Sunday I decided to give it another try... I mounted the bike and thought if I could shift all my weight to my tailbone it wouldn’t be so bad. So off we went, the first 2 minutes were exhilarating! The warm summer wind blowing in my face, the scary/ exciting sensation of potential death while wrapping my arms around my strong, leather clad husband. (Don’t get me started on the leather… but I guess it goes with the bike.)

When suddenly the pain seared through me like a blazing dagger. I was too scared to shift my weight while on a tiny seat on the top of two wheels going 50 mph. So I sat in misery for another 2 minutes until we got to a stop light and I told my dear husband we needed to head back.

He nodded and flipped an alarmingly tight u-turn and we headed home. Then the pain escalated from my urethra to my bladder… turns out straddling a huge vibrating machine shakes up a decrepit bladder in a very unpleasant way.  As we drove past my friends the Alapacas I thought for sure I was going to pee all over my husband and his precious bike. I focused and thankfully we made it home just in time.

As soon as I swung my leg over the bike I stopped focusing and instantly the pee dribbled down my pants into my shoes. It was a particularly hot day here in Seattle so I stripped down, put on my swim suit and jumped into the pool. The cool water soothed my aching body and reduced the painful swelling. The pain eventually subsided, hours later, but I definitely learned a lesson this weekend.

Just because I “can” do stuff… doesn’t mean I should. It’s not worth it to do these things to convince myself I’m normal because HELLO… I’m not! What normal person swims on a hot day primarily to reduce lady bit swelling??

This doesn’t mean I’m going to stop trying new things it just means I’m going to measure my bungee cord before I throw myself off the bridge. (Some how that’s a really deep metaphor if you dig deep.)

IC and Pregnancy

Hey there faithful readers! Sorry about my absence lately… there’s been lots of other stuff going on in my world besides IC, believe it or not!

However… today I woke up flaring really bad so I got straight into the shower and my Mom brought me my sweet 10 month old son so I could feed him. After he enjoyed a lovely, farm fresh breakfast he sat up and burped satisfyingly. Then he sat on my legs and played in the shower stream. I handed him his baby tooth brush and then he grabbed mine off the little ledge in the bath where I keep it. He banged them together, stuck them in his mouth, some times both at once, and he just had a jolly time!

This morning in the shower with Mommy!

While he played in the shower with me I couldn’t help but reflect on where I was a year ago… so I wanted to share my IC and Pregnancy journey.

I was having one of the worst flares in my life, I was having cramps that brought me to my knees and the IC pain was raging. I didn’t know what was going on but thought maybe, just maybe I was pregnant and it was wrecking havoc on my IC. As the sun rose on Sunday January 16^th, I woke Zach up and told him I was going to go to the emergency room. He convinced me to take a pregnancy test before we made the trek, just in case.

I was shaking as I sat on the toilet and managed to push out a few measly drops of urine onto the stick. We waited the instructed 5 minutes and then finally we both looked at the test and there were two faint lines. We didn’t know what to think… we quickly googled and it said if there is any presence of a second line, no matter how faint, it was a positive.

Zach, of course, didn’t believe it and being the scientific guy he is… he wanted a control. So he peed on one of the left over tests. There was only one single line without even a shadow of a second. We stared at each other and at the two tests completely mesmerized. I started crying and jumping up and down with excitement. I was still in tons of pain but at least it was for a purpose!

My positive on top and Zachs... negative... on the bottom

The next few weeks went by slowly as the cramps and IC pain took over my body as this new human attached and grew inside of me. At times I was convinced I was losing the baby but the severe nausea, several positive blood tests, and an ultrasound confirmed the baby was growing stronger every day.

Finally when I hit the second trimester the cramps and massive flare eased… I was still having overwhelming nausea and vomiting but at least my IC was okay. Then as the weeks went by I started realizing not only was my IC okay… it was much better… maybe even gone!

My second trimester had some serious ups and downs but none of it was caused by my IC and I was so thankful that my bladder was getting a chance to have a break and heal. That is… until the massive baby in my body decided to use it as a trampoline.

I had just found out the baby was a boy and this boy was busy! Every time I got an ultrasound they were shocked by his activities and movements in the confines of my uterus. I, on the other hand, was not because I could feel every summersault and soccer kick.

The IC pain started slowly coming back as the extracurricular activities in my Uterus Community Center increased. He was a funny little guy to have living inside of me. He would shift all his weight to one side so I had a crooked tummy most of the time. He flipped head up to head down all day long. The pressure of his jubilation was a lot for my very fragile bladder to handle.

I, of course, had to urinate more but just small amounts of dribble came out every time which caused that familiar burning. Overall though, it was not too bad! I took lukewarm baths and floated in the pool a lot when the pain worsened.

So fun floating with my big tummy! 

As we got closer to my due date the Braxton hicks were my main concern… my OB was convinced that the pain was so intense because my abdominal muscles are unordinary tight from all the chronic pain I has warded off for the past 10 years. I used a heating pad on low but nothing helped the pain that ripped through my abdomen the last 3 weeks of my pregnancy.

I was anxious for it all to be over so I could meet this new little love of my life but now looking back I wish I would have enjoyed the simplicity of it all. Yes, I was in quite a bit of pain and sore all the time but how amazing to be able to keep him safe, warm, and fed all tucked in inside of me. I envy kangaroos that they get to keep their joeys safe and sound in their pouch while also seeing the little guy they love so much. I’m sure they don’t even realize their fortune. (Have I mentioned my husband’s obsession with wallaby’s? He wants one… he wants one real bad.)  

My stellar team of doctors decided a scheduled c section was the best route to go to keep my interstims safe and to not risk further damage to my sensitive lady bits. We set the date, September 12, 2011 and all we had to do was keep him in there until then and wait. Lots of waiting.

Bigger than a watermelon the day before I had Titus! 

 It came faster than it seemed at the time and next thing I knew I was meeting this tiny 7 lb 12 oz baby, Titus James Jovanovich, who had been wreaking havoc on my body. At that moment, I didn’t care. I didn’t care what had happened in my life or whatever else would happen from that point on. I was a mommy to a beautiful baby boy that had my heart the second I heard his cry.

First time holding Titus!

Things went pretty well after the c-section. Urinating was pretty painful due to the catheter but that passed and I was so happy it barely fazed me… or maybe that was just from the sheer exhaustion of having a newborn. Either way…

A couple weeks after Titus was born I turned my interstims on and promptly turned them off because I could feel the wires had moved dramatically. I suffered through a couple months without them on and finally went to see my urologist. She had warned me that this could happen during pregnancy so I was a little apprehensive to prove her right but she was sweet as could be after she saw those sweet baby blues that Titus presents unabashedly.

We scheduled an interstim revision and I had relatively major surgery with my precious 2 month old snuggled at home with Grandma. I had restrictions to not do too much for 6 weeks post- op but of course that didn’t happen and the wires didn’t stay in place for long… 5 months later I was back in for the same thing.

Overall I would say my IC was really tolerable during my pregnancy… I have heard different extremes from other Moms with IC but mine was kind of in the middle. There were definitely times with little to no pain that I rejoiced in but there were times when it was as extreme as ever.

All together it was a long 9 months but it was more than worth it and let’s be honest… I’ll probably do it again so Titus can have a brother or sister. People ask me why I had a baby if it caused me so much pain and is so hard to parent with IC. It's simple. All I have ever wanted was to be a Mom, IC has robbed me of so much in my life but not that. I have commitmented to Titus to be the best Mom I can be. Period. Not just the best Mom I can be with IC. My IC is not his fault. 

Being pregnant with IC is much easier than being a Mom with IC so if you are thinking about having a baby don’t just consider the 9 months… consider the rest of your life having to put some one else before your IC. It is a struggle every day. Today I will miss out on a lot because of this flare but I get to raise this little boy with the help of my family. Yesterday he said Mama for the first time and no matter what else happens in my life, that’s all that matters. I am his Mama before any thing else!

Titus and me on the 4th of July!

Sunshine after a Downpour and Rain after a Drought

 Through the years I have been asked many times, “how can you believe in God when you’re so sick?” It’s hard at times but I do… I believe in God without a question, I know he’s with me, I know he is allowing my body to suffer for a reason, but I know he hurts when I hurt.  

At the age of 13, when I first started having IC symptoms, I was already committed. Thanks to my faith driven upbringing, steady believing family, and hilariously faithful children’s pastor I was sold. Praise God because it would have been a treacherous task to instill faith into me after IC had run rampant.

My favorite thing about my relationship with God is that he gets me… some times I insert jokes in my prayers, some times I get mad at him, some times I don’t talk to him for a few days. He still loves me.

I have a very vivid memory of lying in the back seat of the car after going out to dinner with my family. My parents are in the front chatting about grown up things and my sister is quietly looking out the window with my feet across her lap like a second seat belt. It’s dark out so the only things I can see are flashes of lights and we drive under street lights. I have no idea where we are on our commute but I know we are headed to the sanctuary of home.

How do I know? Because my sister and I are tired and that’s where we need to go. Because my parents told me that’s where we were headed. Because I trust them 100%.

That’s a lot like my relationship like God. I know the end goal is perfect and what I am aching for… even if I have no idea what that is… but I have no idea what way we are going to get there. I am just trusting, having blind faith, waiting for him to let me know we have arrived.

I can feel the God’s presence in unexpected ways at times when I need Him. Like in the car when I felt like I wasn’t going to make it, I was going to fall asleep there in the backseat if we didn’t get there soon. Then, like she could read my mind, my mom would say cheerfully “almost home”!     

God has reassured me by showing himself to me many times, my favorite time was on a beautiful, sunny day like today. I had been in the shower for hours… hurting and frustrated about all that I was missing beyond the confines of the shower. I was sitting there on the hard bathtub floor, being drenched in pain relieving rain drops when suddenly through the door crack a ray of sunshine lit up my bathroom. It only lasted a moment… but I have never doubted, since then, that God is with me every moment. Even if, maybe especially if, it’s just a dull day sitting in the shower, full of pain and frustration.

That may not seem like a big deal to any one else and maybe you could tell me it was a coincidence or a cloud moved or whatever. You can believe what you want. I know what happened.

That was just a tiny example of His unfathomable love but this week He showed up in a much bigger way.

It had been 5 days since my cystoscopy, hydrodistention, and Botox injections. They went into my bladder, checked it out, determined it was half the size it should be, stretched it by filling it with water, and then injected it several times with Botox. The first few days were brutal but by then I was pretty much back to my “normal”.

During my recovery my hubby and I both read the first Hunger Games book. So the day I was finally up to it we planned a movie date. We watched the movie, ate the popcorn, whispered about the differences between the movie and the book. Then we went out to dinner with friends. I drank quite a bit of water at the movie and at dinner so before I knew it the familiar, dreadful feeling filled my body. I had to go to the bathroom… in public. So I headed to the bathroom and sat down… but nothing happened. 

I have had retention before, where I only go a few drops every hour or so… but this was the weirdest thing every. Nothing came out despite the horrible, persistent pressure. I calmly walked back to the table, let every one finish their conversation then announced that we needed to go home.

I got in the shower as soon as we got home, I sat down expecting the urine to flow but nothing happen. The pee wouldn’t come out. It felt like I was on a long desert road trip, we couldn’t find a bathroom and when we did Big Bubba the trucker was taking his sweet time. My bladder was going to burst but no matter how much permission I gave it… it wouldn’t release.

Eventually I got out and slept for a few hours thanks to the narcotics… only to wake up and have to start all over. I wrote this about 16 hours since I had last urinated.

I can’t pee. I have tried the shower, the bath, pain medicine, sleep… but nothing has helped.

My bladder is full and aching… which is for some reason making my lower back and legs throb.

The only thing left to do is to catheterize. I am dreading it. I keep running through my brain what I need to do… get out of the shower, get the bag of catheters from my bedroom where I tossed it hoping to not need it, read the little directions, and just do it.

But some where between step 3 and 4 I get a little paralyzed with fear. I can never even sit like a lady because that pressure hurts my urethra. What do you suppose this will feel like? Completely un-anesthetized mind you…

SO then I think… I could go to the ER where they would do it for me… I’m tossing around the pros and cons of each option. The pro of doing it here would be that I could just get in the shower after if the urethral pain is just too raging but that means I have to do it myself… with a completely untrained hand, with a measly vicodin to relieve the pain and only a tiny booklet as my guide…

Going to the ER would supply me with fine drugs to ease the pain and a skilled hand but I would be stuck there until they determined I was as good as I was going to get… By the by, going this route could help for the current situation but what if this continues… I can’t go to the ER twice a day until the retention eases. If this is going to become a new daily occurrence I will need to learn to do this on my own.

So right now I’m sitting in the shower trying to ignore the pain while I decide what to do. I can hear Titus sleepily protesting as my mom tries to get him to take a nap while he’s teething, I smell the now soggy teddy graham I dropped in the shower, my eyes burn from exhaustion, but my brain keeps reminding me that some thing is wrong. My bladder desperately wants to empty… it just can’t. The only thing left I know to do it pray.

Right after I wrote this I prayed the quickest prayer of my life… “God please let me pee!” took pain meds and another nap. When I woke up and got in the shower my bladder released. Like a long summer drought finally breaking… it was the most bittersweet pain ever. It hurt as the long awaited urine exited but my bladder was rejoicing in the relief.

Since then I haven’t had one single bout of retention AND I haven’t even had one teensy, tiny accident. Not a massive flood or even a little leak. I am in control of my bladder. There, I said it. I have been scared to say it… I didn’t want to be overzealous. But I have been now the captain of my bladder-ship for 5 whole days. Boo yah!

So my question is… how can I NOT believe in God? Yeah… true, I am sick. I deal with pain every day. But look at all the things He does for me! I have bad days but I also have good days! I miss out on a lot when I’m in the shower… but when I’m out I have an awesome life. I am thriving.

I don’t meat to preach… but I just want you to know how much more hope, joy and light my life has because of my relationship with God. I want you to have that too! So know that He is with you as well. Maybe you didn’t even realize it was Him before. But He’s there. Loving you. Comforting you. Easing the pain when you can’t take it any more. Giving you strength. Giving your loved ones patience. Providing for you.  Some times he makes himself known in big ways… some times you just have to open your eyes and you will see him easing your burdens.

The most unwrinkled bladder in the west...

Well I did it… Yesterday I had the Botox injected into my bladder. It was quite the day, not at all what I expected.

I set the alarm the night before but kept saying it was pointless because Titus was going to wake up before then anyway. I took some pretty strong meds to ease the pain and help me sleep before the big day so when Titus woke up an hour after I fell asleep I was useless. I called my Mom on my cell phone and some how managed to communicate that Titus was awake and I… was not. She came into our room and must have realized how drugged I was so she took the monitor after the got Titus back to sleep.

Next thing I knew she and Titus were in our room in the daylight and it was 6:30… the time we were suppose to be leaving (turns out I said it for 5:45 PM… oops). I quickly nursed Titus then showered… accidentally shampooing my hair twice and forgetting conditioner. I threw on some clothes while I glared jealously at Zach eating cereal. I, of course, couldn’t eat before the procedure.

We got in the car and mapped out the best way to miss traffic and I was feeling a little apprehensive when Zach reassured me, “babe, I’m a do-er!” Sure enough… we got to the hospital with one minute to spare!

I got all settled in with my IV and every thing was ready to go! The pleasant anesthesiologist gave me some lovely drugs and the last thing I remember I was laying on a hard bed shivering in the big, white operating room.

The next thing I knew I was sobbing because the pain was so intense. I was in the recovery room surrounded by other post-op patients and nurses. There was a nurse perched on a stool next to me and quickly injected fentanyl into my IV… the pain eased but was still an 8 or 9. She had to give me two more doses before I finally stopped crying and could breathe normally. My throat hurt from the tube that was down it during surgery, I was itchy from head to toe, my bladder ached, and worst of all… my urethra burned so bad. It hurt to have any weight on it or even my legs closed together.

Finally my favorite nurse Tom came and moved me to Day Surgery where I would spend the rest of my time at the hospital. We picked up Zach on the way and he squeezed my hand which made things seem a bit easier. Tom gave me some toast, benadryl for the itching, and vicodin for the pain. I was feeling pretty good and Zach told me he had talked to the doctor who said it went well and they actually stretched my bladder because it was only half the size as it should have been.

I knew it was coming… my bladder was full from all the IV fluids and the water I had drunk for my scratchy throat. I had to go to the bathroom. I cautiously sat down on the toilet and the pain ripped through my body as the bloody urine drained from my body. I started crying again and my body was so tense but I still managed to empty my bladder.

Tom directed me to a reclining chair where I had to tilt my bottom to the side so no pressure was on my sad urethra and he gave me a half a dose of fentanyl. After a while all the pain meds kicked in and I slipped in and out of pain.

After about an hour my bladder refilled with IV fluids and I had to empty it again. Zach carried my IV bags while I held my gown shut and gloomily shuffled to the bathroom. Once again the pain was extreme… No matter what I did the pee just kept coming until my bladder was satisfied that it was empty enough.

My pal Tom was on standby with the rest of the drugs and I told him I was ready to go while the pain meds were working. So I quickly (as quickly as you can that loaded with drugs) dressed in my hospital issued underwear and clothes while Zach signed all the release forms. He left to bring the car up while Tom drove my wheelchair to the exit. We loaded up and were on our way. I fell asleep after we argued about which way to take home and didn’t wake up until we were pulling into the neighborhood.

I got home, got straight into bed and slept for a few more hours. When I woke up the familiar fullness was telling me what I had to do again… I waddled to the bathroom (trying not to let my legs touch my sensitive areas) and sat begrudgingly on the toilet doing the same old song and dance. This time was a little bit easier because I got to get in the shower to ease the pain right after.

The rest of the night I watched the clock waiting for time to take more meds like a bird watcher wanting to see a rare species. I went to bed around 10 but spent more time reading The Hunger Games than actually sleeping. (I know… I’m just now reading it… so un-hip.)

My bladder is so sore from all the shenanigans of stretching and injecting it. My urethra feels like they used a blade rather than a stealthy scope. The pain hasn’t eased up at all and I am taking vicodin on the hour, every 4 hours. I’m sleeping on and off, only eating when I have to eat with the medicine so I don’t vomit, and I’m either laying with a heating pad delicately placed or sitting on my side in the shower.

They said we won’t know if it helped or not OR if it caused retention or not for at least a week… Zach picked up a nice supply of self catheters just in case. Hopefully the pain and soreness from the procedure eases soon and the benefits start at the earliest possible moment.

I promised when I started this blog I would be honest and 100% me… so I hope this wasn’t way too much for some of you. My aunt Claudia specifically… she doesn’t like details…

When I was researching Botox for IC I couldn’t find any thing about the procedure so I hope this enlightens some of my fellow IC patients who are contemplating this. I don’t want to scare you, just inform you. I am actually feeling pretty hopeful that it will help and if not, I will still be glad I did it because it’s better than always wondering if it would have done the trick! 

A puddle... of piddle...

Don't be alarmed... this is not urine... just a  picture I took of a regular, run of the mill rain puddle! 

Sitting, standing. Inside, outside. Laughing, silent. At home, in public. Washing dishes, giving Titus a bath, riding in the car… my bladder isn’t too picky. I lose control of my bladder and empty it then and there under any circumstance.

To make matters worse, the high pressured stream of urine that escapes from my bladders inadequate security system burns the whole way down.

I have two options. Try to tense my feeble muscles to stop the flow… which then causes so much pain from the quivering weak muscles holding back the flood and the fact that I still need to release the urine. Or just try to relax and breathe while the puddle of pee gets deeper by the second.

Depending on the situation I prefer to choose option 2… although it makes a huge nasty mess and is really embarrassing, the pain is less blinding. No matter which method I choose it is so frustrating.

Whatever I’m up to when suddenly the flood gates open I have to stop immediately. Depending on who’s around I some times strip right there and leave the mess for some one to clean up. Other times I waddle up the stairs in my drenched clothes where I strip and leave my pee soaked pants in the sink.

The worst times have been in the car… I never go to the bathroom away from the house unless it’s absolutely necessary (read my public restroom blog to find out more). Often times I wait too long and I find myself in a splashing pond spilling over the leather seat. (Oh great… I’m never going to get a ride any where, ever again!) In this case I do my best to stop the pee but I usually continue going tiny bits the whole way home. I have started keeping an extra pair of pants in my car for any public accidents but that doesn’t help the pain issue.

As soon as I can I get in the shower to rinse the poisonous urine off of me and to try to ease the pain. Most post-incontinence episodes include hours in the shower and usually my succumbing to taking pain medicine.

My incontinence has gotten so out of control that I have been having major accidents like 3-5 times a week. I have been strategically leaving the house after my bladder is as empty as can be and then trying to get home before I need to empty it again.

While at my urologist I mentioned this new amplified version of my usual symptom and she agreed that was not a way to live.

So tomorrow I am going to the hospital, being put under general anesthesia, having a scope voyage up my urethra, and then having my bladder injected 20- 30 times with Botox.If I understand it correctly… it is suppose to relax the muscles to stop the spasms and general disobedience. The only concern is that it may cause more retention which would force me to self cath (yes that means what you think it does… put a catheter in by myself every time I have to go to the bathroom to drain my bladder).

It would be so grand if this helped! I’m told it can be effective any where from 6 to 20 months. Also, it can be repeated as frequently as every 6 months.... if it helps!

So, I am praying my guts out that it will control my bladder muscles enough to hold the urine in BUT be able to relax enough to release the urine at the appropriate times, specifically when I tell it to.

I have heard it takes about a week to notice any difference so be expecting a follow up Botox blog! Thanks for reading and all of your continued prayers.