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.