Because You Loved Me...

First of all... I am terribly sorry I have been slacking on writing blogs for the IC community... I have to admit that it's difficult when I don't have IC more. So I'm basically just using this when my thoughts don't fit on a facebook status... If you're someone with IC looking for into feel free to message me and  can direct you to a helpful blog or set you up in an IC group.

It's been exactly 1 year since my Dad passed away. I am feeling so many mixed convoluted emotions. I think creative people need an outlet to really process information... So I just started writing. I had no intention to post it but we all know my TMI alarm is on the fritz. 

Basically I just wrote about that night my Dad passed away from my perspective. I would love to read the recount of that dreaded night from the rest of my family but unfortunately you're stuck with my side of story...

On May 13th Jeny came over for homemade fajitas and to visit with our Dad. He actually ate a bit for the first time in days and then we snuggled into the bed with him and my mom and we all watched Friends. Jeny and I were being obnoxious and laughing about some random thing that I think had something to do with a ladle and he said "what're you girls giggling about?" (The very last thing I heard him say...)

I figured that was our cue to let him get some rest so I rubbed his arm (I only lived upstairs) and Jeny gave him a hug and kiss on the cheek then she went home. 

I went upstairs to my room and continued sorting photos which I felt the need to do as soon as his doctor started talking about hospice... I stumbled upon his senior year book and the quote he chose to go with his name and under this picture was "A talent for comedy equal to that of the Greeks." which makes no sense so I texted him and asked what he meant... He never responded.

I was sitting in my bed watching the finale of American Idol while Zach slept next to me. All of a sudden I heard animalistic cries full of panic and fear. I paused my show and then my mom bursted into our room and gulped and gasped for air as she said "I think. I don't know. I think he's gone." 

I roughly woke Zach up and unplugged my urine drain bag and my charging phone. My mom was staring at her phone but couldn't focus so I called 9-1-1. 

I said simply... "I think my Dad died" 

While I was on the phone I walked into my parents bedroom and saw him laying there. My mom shook him a few more times and even though I could see his soul had left I ran upstairs to get the finger O2 and pulse rate monitor that we shared. By the time I got it on his cold finger I was 100% sure he was being welcomed into heaven. 

However the 9-1-1 operator kept telling me to do CPR and I told her I couldn't do it, he was gone, he didn't want to get brought back, he was too sick and he was ready for heaven! She told me to give the phone to someone who could and so I gave it to Zach thinking he would tell her to shut up or something. He stood on my parents bed looking down at my Dad's body that was clearly just an empty vessel at this point. My strong, unflappable husband cried as he repeated over and over "I can't do it!!!!" he pleaded with the operator. Just then I saw the flashing lights and told Zach to hang up the phone and to just wait. I ran outside in my paper thin nightgown and screamed for the paramedics to follow me.

I showed them to his room and then I found myself in the hall sobbing into my husbands chest when we heard the paramedic say "we need everyone's help now!" 

My mom yelled "DENI STAY OUT" just a second too late. I saw the medics lift the sheets he laid on and aggressively and urgently pick up the edges of the sheets to drop him onto the floor. We all told them he had a DNR (do not resuscitate) order. Finally his heart had failed and they realized he was truly gone. 

So my Mom, Zach and I walked out with the image of my Daddy's earthly body dead, naked and on a sheet on the floor of his room forever burnt into my mind.

(Later I found out the paramedics consoled Zach and told him he made the right decision in not doing CPR. I'm so thankful that they took that guilt away before it even had time to fester.)

Then my mom, Zach and I collapsed into each other's arms and sobbed.

We all prayed together for a while but then next thing I knew my desperate sobs turned into gentle tears slipping silently down my face. Then I started talking except I was saying things I didn't see or know or hear. 

I smiled and said something like "he's running through a beautiful field. Do you smell that? It's the best thing he's ever smelled. Oh there's music, it's beautiful." 

Then I went back to crying. I will never doubt the Holy Spirit's power because I know He spoke through me that night to comfort us. 

After that the kind, gentle firemen and paramedics told us he was officially gone. We cried and hugged some more.

Then I called my siblings. Jeny and Todd both said they were right coming over but we couldn't get a hold of my oldest sister, Dana.

So Zach announced he was going to drive the 30 minutes to my sisters to tell her and then come right back. I was totally against him going but looking back I think that was for selfish reasons, he was my rock. Then one paramedic gently advised that I let Zach go, she could tell he needed a job so I nodded my head and he left.

Right after that Jeny walked in. We all sobbed together then Todd came in and we all just huddled up and cried. 

The emergency team was still there but gave us space until we caught our breaths and began the literally never ending grieving process. 

The firemen recognized my Dad from the few times he had fallen out of his wheelchair and we had to call them to help. They told us what a sweet funny man he was and that helped. Then he asked us about him...  

(Such a good move!) 

We took turns telling them about all of his achievements, his adventures, his quick wit, the things that made him one of a kind and of course about his deep faith. We all slid back and forth from smiles to tears within seconds.

My big, strong brother sat in one spot and answered questions or nodded  occasionally but he was quiet and the tears never stopped. His face was a glimpse of what his heart was doing. Breaking. 

The cat tried to play with the fireman's radio cord that was hanging down. We all smiled at that. 

Then Zach got home and Dana got there with the girls, 16 year old Macy and 11 year old Tayte, not much later. It upped the ante having the kids there but I know they wanted to be with all of us.

We sobbed without speaking for quite a while. Then the police showed up, the funeral home people came, and the city Chaplin got there.

The fire and police chatted, apparently anytime someone dies outside of a hospital the cops come just to check thing out, they all agreed that it was due to natural causes so the cop left. 

The funeral home had my Mom sign some papers I'm sure she didn't even read. Then we heard a little commotion and one of the firemen came to tell us they couldn't fit the gurney into the room so they'd have to drag my Dad into the kitchen. 

The hardest part of the night, in my opinion, was accidental looking back and seeing a black bag that I knew was full of my Dad's body. Then they had to get him on the gurney and after a bunch of grunting and "I'm about to drop him!", "you grab that side!" I pulled Tayte close to me and covered her ears and randomly sang the Barney song to try to cover the sounds. 

They finally got him safely on the gurney and then we all mistakenly turned our heads to the front door as they wheeled him out. Bad move.

We all totally lost it again. We sat in silence with tears pouring down our faces, passing tissues around.

I looked around and saw the people I love most, they were all in pain and I wanted to console each one but didn't know how. So I moved from seat to seat holding hands and crying with each of these beloved people. 

Then the Chaplin came in and I spent a substantial amount of time rolling my eyes as he introduced himself and told us his life story.... He went on to say all the empty condolences that the Chaplin For Dummies book taught him. But the worst/ best part was him saying.multiple times, "Every tear is a visual hug" over and over. 

I still don't get it. 

Then he left and none of us knew what to do. We sat in stunned silence trying the impossible task to accept that our dad, the kids' poppa, and my moms husband was gone. 

We knew he was in a world of bliss that we can't even imagine but selfishly the physical ache of losing him was shocking. 

Now it's been exactly one year since that early morning.  The pain is still real. We're still trying to figure out this totally new version of our lives. We miss him every single day but you know what I was thinking... His 4 children were made from parts of him and I feel closer to him when I'm with them...

Dana (the expensive one) has his ability to schmooze and chat with random people so well that those people expect a lifelong friendship after one jokey moment in the grocery store. She also is funny in unexpected ways that surprise you and then you laugh even harder. She also lived out adventures with him: sailing, yachting, flying and racing. She was his girl. They spent a lot of time just the 2 of them when Dana was growing up so they had a kind of bond you can only get from relying solely on one another. 

Todd (the peace keeper) has his heart. He loves people deeply and is even slightly sappy. He trusts people quickly and without question. But mainly he loves his children and the rest of his family more than anything in the world exactly how Dad did. He also will do whatever he needs to do to provide for his family just like Dad. Of course I have to mention he also loves football except he's a UW fan while of course my Dad was a USC fan... There was tension during certain games but I think the bond of football kept them even closer. 

Jeny (the sweet and sassy one) is the most like him in my opinion. She got my Dad's gift/ curse of extreme generosity. She has a laugh that is reserved but once it arrives it won't stop. She loves to be with people and have fun but she also needs tranquility occasionally. She has his sense of independence and spontaneity. She cares so much about her job and always goes above and beyond using that Jamie Tindall  work ethic. But most of all she has his unwavering faith and truly strives to live the life God wants her to. 

Then there is me. The baby. Deni (the funny one). It's weird to write this about myself but I have a rare combination of cockiness and modesty that makes me think I'll manage... I use fun words even if it's used incorrectly. I make up words and stories and I give everyone nicknames. I live to make people laugh and feel genuine joy in my heart when I succeed. I have a quick wit that would occasionally surprise my Dad, making it even funnier! We also had similar taste in food and I loved hearing good reviews from him for my cooking because the man was pretty brutally honest. 

 (Side note... Zach is a lot like my Dad in many ways too. The saying that you marry someone like your father is apparently true...)

I also see him in his Grandkids... 

Macy got his humor although she's still refining it 

Carson got his athletic abilities 

Tayte got his big, pure heart.

Landon got his adventurous spirit

Titus likes to share his opinion on every topic but also has quick whit

Elliette got his independence and his ambition! 

Most importantly my Mom. She puts on a brave face but I see her eyes fill with tears occasionally. I see her big heart grow even bigger even as she mourns. She's trying to learn what life is like without him, her husband of 34 years. 

So all of us are down here with broken hearts covered with band aids waiting for the day our hearts will be healed and we're with him in Heaven. 

Maybe they celebrate "entrance into heaven day" similar to how we celebrate birthdays. Maybe heaven is so wonderful that there is no sense of time or special days because they're all perfect. Maybe he's up there dancing with a full heart knowing that he's in his eternal home and the people he loves so much will join him some day. Who knows what it's like but as long as our faith sustains us through this and so much more I am confident we will all be together again some day.

My ache. The hole in my heart that he once filled. The intense longing to joke with him and just be with him. The pressure to talk about him and tell stories about him so that Titus won't forget him. Realizing he's already missed so much and it's only been one year... These struggles are so difficult and painful but the joy that comes with knowing that he is in paradise and his heart doesn't lurch with pain when he thinks of us like ours do for him, somehow makes everything easier. 

Finally... I wanted to share the song that i always thought of him when I heard and it ended up being the song he and i danced to at my wedding... Every word is so true. 

https://www.youtube.com/watch?v=Ve4XD4LveU0

This is a dual purpose kiss! I love you and thank you for paying for our entire wedding and honeymoon! Ha, 

One of my favorite part of my Wedding Day! I wish I knew what I was laughing about! 

B String Symptoms

I've been sick for a really long time. I'm 28 and I first starting having symptoms when I was 12 so that means I've been sick for more of my life than I've been well. I don't even know what it's like to be a "normal" healthy adult. 

At first I just said "my stomach hurts" because at 12 every thing in that general vicinity is your stomach. After ruling out anything GI related my pediatrician sent me to a gynecologist at the incredibly tender age of 13. Though I went to dire straits to boycott this terrifying appointment, it ended up not being so bad. After medication and eventually a laparoscopy I was diagnosed with severe Endometriosis. Before my beloved ob/gyn retired last year he said he never did see another case of such a young girl with such aggressive endo. 

Anyway. After another year of treatments I started noticing the symptoms were changing and I was also having urinary symptoms. So at 15 we did some rounds to find a good urologist who would take me on with my complicated symptoms and age. Finally we found a good one.

She quickly diagnosed me with interstitial cystitis then we began the arduous journey of battling IC. 

Symptoms came and went, treatments helped and failed, there were lots of highs but even more lows. 

We blamed any weird, seemingly unrelated issues on medications or just my body fighting back after years of pain.

Things spiraled out of control until I found myself 28 years old with no uterus, ovaries, cervix, bladder or urethra. The doctors had run out of treatments so the only thing to do was remove the diseased organs out of my otherwise (seemingly) healthy body. 

There were side effects and complications as is expected of major surgeries and reconfiguration but we kept moving forward expecting these bizarre, write-off symptoms to go away eventually. 

And yet. They didn't. Here I am a year after my last major surgery and I'm still struggling man. I have all these symptoms that I never focused on because I had bigger, badder things to worry about and it was easy to brush them off after dousing them in blame from other things. 

I was literally taking a bucket full of medications just a year ago but now all I take is a half of a Valium for muscle tension and 2 Benadryl for nausea and to help me sleep so these random things can't be blamed on meds. (Admittedly I did just stop taking hydroxazine as needed for nausea and I took off my scopalamine nausea patch to see if that helps with these creeper symptoms.)

I'm still having nausea and diarrhea daily which can be shooed away with the fact that I had two intestinal surgeries within one year. Oh and I'm gaining weight faster than a Jr. High wrestler trying to hit the next weight class. 

Then I have weird ghostly symptoms like urgency and the feeling of a full bladder even though it's literally an empty cavern in there... Occasionally I have horrible urgency like I have to pee, sometimes I will go as far as sitting on the toilet or taking a shower to trick my body. I also get regular flank (kidney) pain and swelling. These all might be phantom pains but they could also be signs of UTI's... Yes you can still get a UTI without a urethra or bladder. If you want more info about that, give this blog a quick gander... 

http://how-ic-it.blogspot.com/2015/09/i-planned-on-writing-blogs-detailing.html

I also have occasional fevers, thick, rank urine and unsatisfiable (I think I made that word up but I like it) exhaustion. No clear explanation for that.  

Then! I started really noticing a symptom I've had for years but have always blamed on medication or treatments. However I wasn't on those anymore and I was still having these crazy episodes. It usually starts with my toes, they curl up and spasm in all sorts of wonky ways. I try to make them do it on my own when they're relaxed but I physically can't make them do what these spasms make them do. All my toes go in different directions, one twitching while the others stay stiff, etc...  It's like they're possessed. Then it travels up to my calves creating horrendous Charley horse like spasms. 

Then I started noticing how regularly at least one part of my legs and/ or arms are numb or tingling. I have always blamed that on bad circulation or whatever and never paid much attention to it but once again, these little things starting sticking out to me. 

I wasn't too concerned about these seemingly minor things until I started falling. That's right, I am just minding my own business standing or walking when suddenly my legs give out and I'm on the ground. It's not a big dramatic fall from some Melissa McCarthy comedy. I literally just drop down like I'm in the ghetto hearing gun shots. 

My hands also have had weakness causing me to drop my colored pencil mid color while coloring a bright jungle scene in my grown up coloring book... Don't get me started on my increased inability to open barely tightened bottles. In the ghetto. (I liked the previous ghetto mention so I'm going with it... keep up.)

So what's a girl to do?! I went to my primary care physician who has always been great! He treats me with respect, knows I'm not a drug seeker (he saw me wean from 25 morphine a day to 0 in 6 months on my own), and he knows how much I want a real life. So when I presented these "new", actually old just ignored, symptoms with tears in my eyes I expected a light bulb and an instant theory that would not just explain the recent additions but the last 16 years of constant health issues. 

Not so much.

He kind of ho-hummed for a while, reminding himself out loud that I wasn't crazy and then said he really didn't think it was anything neurological but it was worth testing. For the first time in his office I started to get that horrible, humiliating creepy feeling that I get when healthcare professionals start to categorize me as a kook when he brazenly mentioned an antidepressant. 

If you know me or you've read my blogs before then you know how Ludacris (yes I know it's spelled ludicrous but I'm a millennial and early 2000's hip hop (not to mention The Fast and The Furious) will forever live in my soul)  it is that I would need an antidepressant.... It would literally be like giving a chubbier, less glamours but equally spunky and snarky Miss Piggy antidepressants. Some how I feel like my husband might disagree with that comparison... Comments babe? 

Anyway! When my PCP saw the panic, fear, sadness, defeat... Whatever flashed in my eyes when he gave that offensive offering of antidepressants he quickly said first we would rule out damage to the nerves and the majors like MS and ALS by doing a nerve conduction study. 

I felt a weird shred of hope. I didn't want these lifelong, horrible, debilitating disease but I also didn't want to be miserable without knowing why and I really didn't want to be labeled by the one doctor I thought I could still trust. 

Well. That shred of hope was ripped into a million tiny shreds as I had the test today which came back completely normal. Hooray! I'm not dying and I don't have a degenerative neurological disease but what the (Grandma close your eyes) H-E-Double Hockey Sticks is going on then?!

I walked out of the exam room where they did the nerve conduction test that made me feel like I was an inmate being shocked for practice on death row.  

Humiliation and defeat overwhelmed my senses. Sounds were mumbled, faces were blurry... Life hadn't changed at all but I felt like I was just delivered a sentence. Not a death sentence because at least that would be over relatively quickly, this was something more cruel and deserving of only the most vindictive, repulsive sorts. A lifetime of unproved, undiagnosed, untreated pain and symptoms. 

I kind of lost it for a few hours. I withdrew into my personal turtle shell and shut everyone out. I slunk out to call my PCP to see what was next (he had briefly mentioned an MRI at my last appointment) but I wish I hadn't because for some reason the nurse didn't put me on hold... She just told my PCP that the nerve test came back normal with me just an airwave away. I heard him mumble and the nurse repeated what he said as he said it "it's probably just in your brain.... Not that you're crazy... Ha. Ha. But ya know, you and your body have been through a lot... Let's schedule a follow up." 

For the first times I didn't happily thank her for her time and toss out frilly salutations, I just hung up. 

Then I sobbed.

Like, boyfriend broke up with me a week before prom kind of sob. Like, suddenly realizing my son is going to grow up and marry a girl and I'll be useless to him and I don't even have a daughter who will still visit on holidays kind of sob. Like, Parenthood finale kind of sob. Primal devastation. 

That was about 12 hours ago. I'm doing slightly better. I'm not sure why. I spent about 3 hours having my pity party in my turtle shell and then I just kind of moved on. It's just another hard day in this life I've been given. I would be lying if I said there wasn't a moment today I was thinking death would be such a lovely departure from it all... Not that I was suicidal, I just can't stand the thought of 60 more years living like this.

I know this was just the first step of this whole new diagnostic process but I'm scared the my PCP is going to give up on me or just go with the easy out and pin the giant "W" on my lapel... Whack Job. 

Unfortunately this is such a common problem in the IC/ chronic pain community. The doctors are stumped so they stick us in a box of whiners, attention/ drug seekers, worry warts, hypochondriacs, low pain tolerant wussies, and apparently geniuses who can create physical symptoms with our minds.... Then they just move us along with a condescending pat on the head and reminder to drink lots of water, not dwell on the pain (that they put in air quotes in their mind), and to be active! 

By the way... Not that it's related to this blog... Well I'm not sure what would be related to this Christmas light cluster of a blog but I thought I would mention... I know I've told you in past blogs about my aversion to hospitals, especially ER's so I think I am fighting another UTI on my own as I wait for fever and vomiting so that I'll know for sure that it's full blow nephritis or that it's gone septic so they will take me seriously. Maybe that makes me stubborn or stupid but I'd rather feel that than how they make me feel when I show up with "colonized bacteria in my urine and a high sensitivity to pain"... As far as the muscle symptoms and falling, I don't know. 

So. 

I'll just keeping doing what I've done for 16 years and take it day by day. 

Ugh. Sorry for the lengthy, dreary post. I live in the Seattle suburbs and it's February... Surely I'm allowed one blog to match the weather. 

To end on a lighter note... A funny Titus (my 4 year old son) story... He was eating a sucker and I asked for a lick... He looked at me kind of weird then shrugged his little shoulders and stuck his tongue out as he started to lick my arm... I was laughing so hard I could barely tell him that I meant I wanted a lick of his sucker not for him to lick me! He's such a sweet, silly boy... He makes the grind of each day so much brighter with little moments like that! 

Worcestershire Sauce.

Over the years of being bed bound I have racked up hours and hours of Food Network watching so any time I'm up to making the long trek downstairs I can't help but cook something! I've come to love cooking and experimenting with recipes until they kind of become my own.

One such recipe is my teriyaki sauce. People often ask me for the recipe and I basically list the ingredients with the quantity simply listed as "to taste"... i.e. Soy Sauce- To Taste. I don't use pedestrian implements such as measuring devices.

One day I was whipping up my sauce, just going through the familiar motions but when I tasted my sauce to decide what it needed I was appalled! It was disgusting! I added CUPS of brown sugar and water to try to balance the incredibly inedible saltiness. I wasted all sorts of things as I tweaked my sauce but I just got further and further away from my familiar, delicious result.

Finally I noticed the bottle of soy sauce was still in the fridge... I was using Worcestershire sauce. A dash here and there is great but half a bottled mixed with various Asian ingredients and copious amounts of brown sugar... Real bad.

I bet you're wondering what in the world this little glimpse into my life has to do with anything... Bear with me.

I spent so much thought and time trying to fix the issues of the sauce that I didn't even consider the big picture. I thought it was too salty so I added sweet, I thought it was too pungent so I added flavorless water. I never once considered there was an actual problem that was causing it all.

This is what my doctors and I have been doing with my rattletrap of a body. We focus on all these weird, isolated incidents and symptoms but we have never looked at my body as a whole to see if maybe there is a a greater malfunction or problem that is causing everything!

What a bunch of dodo's.

Let's just talk about these symptoms... Going as far back as 12, I had severe chronic lower abdominal pain and urinary symptoms. Since then things have developed like constant nausea, severe fatigue, restlessness, extreme sensitivity to any pressure, blurred vision, muscle cramping, muscle weakness, falling, passing out, numbness/ tingling, of course continued pain, and on and on....

We've always had something to blame it all on... Medication side effects, recovery from surgery, complications, etc... But now here I am, off of my meds, not currently in any medical crisis and the symptoms continue. These aren't just symptoms that should be ignored or downplayed. I should not be falling or having regular uncontrollable muscle spasms.

So. By George. Maybe we should look into the WHOLE picture that is Deni's whackadoodle body.

Looking at the symptoms my doctor thinks it may be neurological so we are starting there. I am having a "nerve conduction test" done next week which sounds like a secret, truth producing torture where they put little needles into my nerves then send electric currents through them to see if and how well the jolt travels through my nerves, basically testing for nerve damage. Sounds like fun.

There is also the autoimmune path that we might explore depending on results from that torture and other neurological testing they might do. I know that IC is a relatively young disease and the consideration of it being an autoimmune disease is a pretty new theory but if that's the case it would make sense that I would have other diseases under the autoimmune umbrella.

It's hard being a frontier of this disease but I am thankful for any forward motion that is happening... I wish more doctors would stop looking at each symptoms and look at us as people, as patients, as a whole. I also wish that we didn't have to be afraid of being judged or categorized as paranoid or attention/ drug seeker every time we bring up a new symptom because maybe if a doctor would trust us and listen to us we would start these processes and find answers easier and faster!

I'll keep you updated but learn from my mistakes... Mention ALL of your symptoms to your doctors, don't just write them off because it's easier. Your body makes symptoms to alert you that something is wrong, like sending a distress flare from a life raft in the middle of the ocean... Don't ignore the caution flares because there are distracting fireworks nearby. (I really wanted to end it on that and just have people read that sentence over a few times then shake their head and blame it on my quirkiness but I have to acknowledge that was a stretch even though I'm not going to change it. I rebel in small ways to make myself feel in control of my life. I'm working on it.)

My New Normal.

Since I've crept back into the world of IC I have been asked regularly about my experience of "getting my bladder removed". It's a touchy subject and I tell different parts of my journey to different people based on where they are at in their own IC saga. However with the anniversary of the beginning of the end of my bladder's life just yesterday I thought maybe I would share my whole story.. The good and the bad, the gross and glorious, the expected and surprising... All of it.

Brace yourself.

Settle in.

Do you need some refreshments?

Okay, ready when you are....

Action.

It all began on a cold, dark morning... Okay that's a little drastic. New beginning.

On December 30, 2013 what started out to be a surprisingly typical day for me ended up being a day that would forever live in infamy.... Maybe a touch too dramatic but let's leave it just for the flare...

I was headed in to the OR once again.. for my 26th surgery. They were going to do a hydrodistention (stretch my bladder by filling it as full as possible with water), inject my bladder with a whole bunch of botox (to keep things tight to help with incontinence), laser off any new hunners ulcers, and remove my two interstims (neurostimulators that were placed in my low back to theoretically help my bladder's dysfunction but hadn't been working for a long time).

It started like any other surgery day... Get to the hospital at 0 dark 30 (I have no idea what that phrase means...), change into a gown, answer a billion questions, confirm my identity and allergies, get an IV in my ridiculously hard veins that have been used and abused over the years, settle into the pre-op bed and then wait for the flurry of nurses and doctors to come get me when they were ready... 

However when the anesthesiologist showed up I could tell something was off... She glanced at my chart, acknowledged my warning about predictable post-op nausea and vomiting then declared I would not be having general anesthetic. She was going to give me a spinal and put me in a "twilight"... I was very concerned.

As a general rule I don't like change... Especially when it comes to certain traumatic topics. One of these such moments came years before when I was actually having one of my interstims revised... The anesthesiologist used a similar technique with this suspicious "twilight" except when I woke up in the recovery room, I remembered so much of what had happened to me in that cold, white room. I remember the feel and smells of my body being sliced open as my doctors casually chatted, I remember them searching for the right spot for my interstim lead to go, I remember my doctor asking what time it was then saying something like "well this will just have to do...", I remember crying, screaming, reaching out for someone to hold my hand... Then it was all dark again...

So needless to say I really just wanted them to fully knock me out this time... I didn't care if they did it road runner style and dropped a bolder on my head, I did not want to remember a single thing.

But on this day in December this young anesthesiologist had something to prove. So despite talking directly to my urologist, the surgeon preforming the surgery, and my desperate pleas... She decided to give me a spinal and some light sedation.

Well... The surgery went fine however after I woke up I was unable to empty my bladder, like at all! Not even a drop. They scanned my bladder and it had over a liter of urine stuck inside but no matter what I did I couldn't get it out.

I was never able to urinate on my own ever again.

I don't know the reason... Maybe it was just a coincidence, maybe too much botox, maybe the spinal, or maybe it was from removing the interstims... I don't know. No one knows.

My urologist and I spent 3 brutal months trying to patch up my bladder to at least the level it had been before that fateful day in December but it was to no avail. It got to the point where I wasn't just fighting for my bladder to work again... I was fighting for my life.

The various substitutions for urinating as God intended were each more horrible than the last... Feel free to read some of my blogs I wrote at the time... 

http://how-ic-it.blogspot.com/2014/01/diary-of-mad-ic-patient.html

http://how-ic-it.blogspot.com/2014/01/hell-cath-not-fury-like-ic-patient.html

http://how-ic-it.blogspot.com/2014/02/super-pubic-to-rescue.html

My beloved urologist who had been by my side since almost the beginning didn't know what else to do for me. My bladder was essentially a dead, useless organ inside a healthy body waiting to live. The only possible option I had left was to remove the diseased sack that had been torturing me for most of my life.

There was no begging, no convincing, no proving, no contemplation... It needed to be taken out before it took me out. 

So I went to the premier oncology urologist in the state at the University of Washington. He told me he did not do diversions at all, they were far too risky, he took bladders out he did not make new ones. He did some research, talked to my urologist, sent me to some other specialists and then he agreed. We had to remove my bladder and my urethra.

In technical terms I had a radical cystectomy with an ileal conduit. He was able to do it robotically through a few small incisions and then a little bit bigger one in the shape of a hook around my belly button that he actually pulled my bladder out of. The doctor couldn't believe how horrible it looked once they got it out, it was truly ruined and diseased and did not belong inside of me anymore.

Once they removed it they needed to create a new way for my body to release urine... So they created a little extension that went straight out of my low abdomen using a piece of small intestines... 

These charts really helped me understand things... I had it done to me and I still can't explain it very well... 

Typical Urinary Tract

Typical Small Intestines 

My new urinary tract. Kidneys, ureters, then ileal conduit, then stoma. 

The recovery was brutal. Here are some of the blogs I wrote during that time...

http://how-ic-it.blogspot.com/2014/06/oh-horror.html
http://how-ic-it.blogspot.com/2014/06/carry-on-baggage.html
http://how-ic-it.blogspot.com/2014/06/i-found-hope.html

As the months passed I grew more frustrated by the debilitating abdominal pain I was still having. Everyone blamed it on surgery side effects but my small town physicians assistant had the wisdom to send me to get a CT scan just to be sure... They found a major obstruction in my small intestines where they borrowed the piece for the conduit.

I spent the next 10 days sicker and in more pain than I had ever been in my life. The blockage was so severe that I was actually vomiting poop because it had no where else to go. They jammed a tube down my nose and into my stomach that was constantly sucking up waste but it couldn't keep up. They put me on strict "bowel rest" which meant no food or water and constant draining from the NG tube until the blockage cleared. The tube was unbelievably uncomfortable and make it impossible to speak or even swallow.

But finally it worked and the blockage was cleared.

However little did we know at the time, we had just fixed the symptoms not the greater problem.

Months later thanks to a no nonsense, straight forward, yet completely lovely and kind surgeon they found a stricture in my small intestines. Which basically means that when they took that piece of intestines out then restitched it back together, they did it too tight so there was a narrowing that things kept getting stuck in.

So in January... A year after this nightmare began they sent me back to the OR and opened me up with a mid line incision (from above my belly button down to my bikini line) and they untangled my gnarled intestines, cut out the narrowed area and then repaired it so it was wide enough for things to easily pass through.

Almost the full incisions after the stitches were removed...

That was another hard recovery.. I was taking around 20 morphine a day and I was still barely functioning from the pain. Eventually, thanks to an awesome pain management, post-op, and physical therapy team I got off the meds and was finally on track for a healthy life!

Then that frilly, dreamy, healthy life came to a screeching halt as nausea, pain and other weird symptoms starting showing up fast and furiously. It didn't take long to find out I had a UTI  (yes you can still get a UTI without a bladder...) that turned into a nasty case of nephritis aka a kidney infection. It took weeks, so many rounds of trial and error, dozens of doctors, several antibiotics, two hospital stays and some out of the box methods to finally tame the infection. 

While I was in the hospital I had some fancy shmancy infectious disease doctor that everyone treated like some world renowned king of the doctors but the only thing royal about him was his jerkiness (I'm so good at insults). He was sure that I was either a drug seeker or a crazy person who was desperate for attention or perhaps it was all in my head. Don't worry... He documented that in my charts. Helpful.

Thankfully, once again my dear physicians assistant saw past the malarkey and trusted me enough to dig deeper into the issue. Dr. McEnroe (the super mean ID doctor's name was similar but I called him that because of the infamously sassy tennis player) was so sure I was wrong about my infection that he took me off of all antibiotics so when my PA tested my urine he actually found out I had two kinds of bacteria in my urine. The problem had been that they would test my urine and it would show e-coli so they would put me on the antibiotic for that but then when it wouldn't get better they would test it again and they would find the enterbacter bacteria and change my antibiotic. Round and a round we would go... Never fully killing the infection before changing to the other antibiotic. So actually if it hadn't been for that dipstick doctor who knows how long it would have taken to figure this out. A blessing in a very good disguise.

My PA put me on two kinds of antibiotics at the same time (one of which I am allergic to and am forced to take Benadryl with to keep from getting covered in hives but it's the only one that works) and FINALLY I felt better! Like totally fine! My PA wanted to check my urine just to see so I happily dropped off what I thought was a perfectly clear urine sample (it didn't smell, didn't have any gross chunks floating around, and was even a lovely light yellow color) but just a few days later I got a call from the nurse telling me that my urine came back positive for bacteria.

I was so confused and frustrated. What in the world did that mean?!? Thankfully I got in to see my PA and he explained things to me... When they introduced the piece of intestines into my urinary tract (the ileal conduit, refer to the chart above) they also introduced bacteria into a usually sterile system (your digestive tract is not sterile while your urinary tract is). So for some reason a whole colony of bacteria decided to take up residence inside my crazy, redneck modified urinary tract. He said this was actually okay and I could live with these bacteria in there as long as they just remained calm and didn't turn into infections.

This is pretty much what I asked him... "So is it like hobos? Like we acknowledge that no matter what we do they are going to be around so we might as well give them a tent city and as long as they live peacefully they're welcome to stay? Controlled chaos basically?" He paused for a moment then in a very respectful way said something like "I don't think I would have ever put it like that but I guess you could say that. Sure."

Good. I had a whole tent city of bacteria and as long as they were happy, I was happy.

They kept their end of the bargain for about two months but then my maintenance of their little village started getting a little lax. They didn't care that it was December and I was busy... They needed rest, hydration and low stress to keep their little society functioning! After a few weeks of not having their demands met they went into full on protesting riots.

In other words. Those happy bacteria multiplied and got serious causing a big time infection. Thankfully we had a plan. After 3 days of serious symptoms I went straight to the pharmacy and picked up the two antibiotics that had neutralized the infection before. After a few days of rest, water, and the almighty antibiotics I started feeling better! Phew! The bacteria tucked themselves back into the confines and all was right in the world of my urinary tract.

Of course nothing worth writing about ends that easily... As instructed I was going to finish my full round of antibiotics even though I was feeling much better. So one night I took my fistful of meds including the antibitoics, Benadryl and my nightly Phenergan to calm my ever present nausea. The next morning I woke up feeling a little tense and my throat felt tight. I assumed it was because of the allergy to the antibiotic so I took another dose of Benadryl as well as another Phenergan.

I thought I would take a nice little nap and wake up just fine so my Mom took my son to school and then was having brunch with a friend when all of a sudden the tension made my toes curl then moved up to my calf muscles and continued until it reached my neck. The next thing I knew every single muscle in my body was clenching and contorting. I had zero control of my body as my head and shoulders thrashed from side to side, my back arched, my legs tucked under me. I picked up my phone with my fingers tensing and releasing like spider legs and clumsily dialed 9-1-1. I calmly told them I was having an allergic reaction. I hung up then called my Mom telling her the ambulance was on it's way.

I had what's called a Dystonic reaction which is kind of like a mix between a seizure and a bad episode of Parkinson's Disease. After a shot from the epi pen, loads of Benadryl, steroids, tons of muscle relaxers and an overnight stay in the hospital to make sure my vitals went back to normal I was released from the hospital with the thought that I was now dangerously allergic to the antibiotic and to not take it again. I asked numerous times if they were sure it wasn't a reaction to phenergan because I had had the exact same reaction to 2 other antinausea medications before but the doctors were insistent. 

I was tense and sore from the hours of thrashing like a beached shark but I mustered up the energy to go to a sing-a-long version of "White Christmas" with some of my favorite ladies then I got home and took my nightly Phenergan and benadryl.

The next morning after the benadryl wore off but the phenergan hadn't the reaction started all over again. This time my Mom and my sweet, terrified baby boy were home to witness it. We went through the exact same motions except this time the ER doctor agreed that it was the Phenergan not the antibiotic. He saw the desperation and experience in my eyes and lovingly sent me home with an anti-seizure med and high dose of valium to continue to take around the clock until the spasms stopped.

The medicine made me crazy but sure enough after the Phenergan was out of my system the spasms stopped and I was back to normal! After it was all over I told my husband I wished I had video of myself during the dystonic reaction and he shook his head and told me I did not want to see that. He said it was like something out of "The Exorcist" and was terrifying to see. After thinking about it I do remember being between "episodes" and my muscles were shaking from sheer exhaustion and I panted as I saw the fear in my Mom's eyes...  Then it would start again so they would inject me with a shot of something and it would stop again... Thankfully I don't remember too much more than that.

Things went back to normal eventually, of course that only lasted a couple weeks... Those pesky homeless bacteria noticed that they didn't get the full anti-riot treatment (because they had me stop them in the hospital when they thought that was causing the reaction) and they weren't having their high demands met so they started up again.

That leads me to today. On day 3 of a really bad version of the same old infection. Flank and abdominal pain, exhaustion, nausea and vomiting (I miss you so much dear Phenergan), the urge to pee (I know it doesn't make sense...), and the rancid smelling and looking urine. I just started the antibiotics and hopefully after a few days of copious amounts of water, rest, and the antibiotics I will be back on track.

In the meantime I'm missing out on family time at the cabin for New Years... I can't believe this whole thing, when my IC went from chronic to life threatening, started 2 years ago! I can't believe that this is the life I lead now... Pampering and maintaining a village of bacteria, always in fear of them flipping out and disrupting my life with infection mode.

Maybe some day we will figure out a better way... Maybe we won't. Some days I can find the thankfulness for the good days that are so much better than the bad ones I've had over the last 2 years. Some days I am just angry. Some days I am scared that eventually these bacteria will stop responding to these antibiotics and the infection will go full blown untreatable nephritis causing kidney failure and who knows what else... Some days I'm just happy to have made it through so much already and still smile every day.   

This is how things look now... I've gained weight who knows why, my incision has healed but is still tender and red, and I always have a bag of pee hanging off of me... (This is nice, uninfected pee by the way!)

                                     

While I was in the hospital for the last dystonic reaction, my body forced me into a tiny ball of tense muscles the nurses took turns stabbing me with shots because they couldn't get an IV in and one of the nurses told me "you can do this. You have gone through so much worse. This is nothing. You are strong. You are a fighter. Keep smiling. Keep laughing." Then she made me tell her about my miraculous, blessing of a son while I fought for control of my tongue that was trying to fold back into my throat. It worked. Well it may have been the innumerable shots into my legs, bottom and arms but either way I got through it. Just like I always do.

This is my life now. I will say it again... It's not better than IC, it's just different. It's scarier and worse when it's bad but it's also better when it's good. I hope I can calm the resident bacteria soon enough to enjoy some family time on this special weekend.

Here's to 2016 and whatever it brings... 

10 things people with IC want you to know!

We moved a few months ago and we've had to had the pleasure of meeting a bunch of new people. It's always so awkward for me because my illness and pain are so much a part of my life but it's all a little too much info for a first introduction… So I do the modest, polite thing and wait until our 2nd meeting. 

Then I started to get to know people better and they must have confused me for someone else or maybe nodded off while I was rambling on and on about the inner workings of my new urinary tract because they actually wanted to get to know me and even become friends. It's very strange. I'm thinking maybe I should write a letter to the mayor about getting the water tested here...

Anyway. These new friends of mine have been wonderful! So loving and accepting of all my weird things- physically and personally. However I have realized I feel the need to recite some warnings and disclaimers at the beginning of these relationships and I thought maybe other people with IC or other chronic pain/ illnesses feel the same. So rather than us constantly reading the rights to these poor, unexpecting friendly people over and over I thought I would put together a list of the 10 things we want others to know about being in any kind of relationship with us… Feel free to share and use for your own people mining. 

10. Please don't mention how we look unless it's ravishing then simply say “you look ravishing”.

Definitely do not say “wow you don't look very  good” OR EVEN “you don't look sick!” Although IC is often described as an “invisible disease” and people love to point out how not sick we look, we hate that. We push ourselves to remain cheerful amongst the highest level of pain and when people happily diminish that based on our smiling faces it makes us want to never smile again. After we punch YOU in the face. 

Look at me. In the hospital, super sick with a kidney infection smiling and throwing the V for Victory... Even though our beloved USC Trojans lost that game... 

Of course sometimes we’re exhausted and miserable making us clearly look sick, no need to point that out either. 

What a lovely example of me looking sick... And also like I murdered an entire nest of baby birds and enjoyed it. 

As far as clothes… We want to dress cute and normal but our whole entire pelvic area is so sensitive that anything even slightly tight or stiff is unbearable. Leggings becoming trendy was an exciting fashion time for those of us who feel like belted snowmen after a fresh snow storm if we wear jeans. We are pretty much left with sweats, yoga pants, leggings, and dresses. 

Don't question the level of formality based on our outfits. Ever. Sometimes we’re in so much pain that even baggy husband sweats are too much pressure and we are forced to wear dresses. No we're not going anywhere. Yes we clean up nice. We know. Thank you. On the flip side sometimes we wear sweats to a party because that's all that we can manage. We know we look like a scrub (I can't think of the last time I used that word and I'm just downright nostalgic about it now.) but just be happy we're out of bed. Thank you. 

This is me. In pajama pants with tiny martinis on them, oversized sweatshirt and my hubbys boots. At Walgreens. 

In a dress. At the river. 

Also, we rarely wear makeup or do our hair. It's hard enough to just get out of bed and maybe even, but not guaranteed, shower. Unless it's an occasion where gifts are exchanged or luxurious food is consumed don't expect much. Yes, I make most important decisions based on food alone. 

Which leads me to… 

9. Most of us with chronic illnesses, especially IC, are on strict diets. Don't push us to “splurge” or “treat ourselves”. 

We're not trying to lose weight (more on that topic next), we mean our irate bladders cannot handle any added acidity. If you truly care then take the time to study the IC diet list and memorize it but I always like to say if you wouldn't want it to drip into an open wound then we probably can't eat or drink it… Tomatoes, citrus, alcohol, spicy foods, etc… Don't take offense if we don't eat your bountifully fresh caprese salad or do a shot of tequila with you at your bachelorette party.(Some of us, including me, are exceptions to this rule but it's a big one for the majority of us!) (I mean the entire diet point not specifically the tequila…) (I feel like I didn't make this clear... After my cystectomy I was allowed to eat whatever I wanted, including but not limited to tequila.)

My first legal orange!

Oh one more thing on that topic… FOR THE LOVE OF GRAVITY PLEASE STOP TELLING US TO DRINK CRANBERRY JUICE. It not only doesn't help, it's a huge trigger for us! Thank you. 

8. We are fat, skinny, swollen, starving, sickly, plump… It's not our fault! 

We've all struggled with weight in different ways thanks to our disease. Most of the medications prescribed for IC, and other chronic conditions, have the ever frustrating side effect of weight gain and increased hunger but if we find something that helps we'd rather have thighs that look like the gelatinous goop that is carved off of a cold, fatty slab of beef stuffed into patty hose (hello visual…) than any symptom that could be otherwise controlled. We will always choose a medication that helps symptoms long before the hope of a svelte figure. Sometimes our weight gain in simply caused by being stuck in bed with only ice cream and Cheez Its as our companions. Either way. Our increased weight is not at fault for our miseries. I would strongly urge you to consider how much you would like to be tied to the back of a car and forced to run behind it before ever mentioning that exercise or weight loss might help our symptoms. We get real revengey when people say stuff they know nothing about. 

This is to simply prove how much I love you all. Ehhem... I happen to be in the weight gain side of things right now. That beef fat analogy had to come from somewhere... Oh and the ice cream and Cheez It's as your only companion might be from experience. 

On the flip side, sometimes the disease, symptoms or medications can cause us to lose weight. Of course this is typically a pleasant side effect but sometimes it just makes us look sickly and unfed. You're welcome to compliment us when we've lost a normal amount of weight but I really urge you to think about being forced fed figgy pudding like the poor Grinch before you say we've lost too much weight or we need to eat a cheeseburger. Again, revengey. 

This was when I was on the sickly side... But Titus hunting for Easter eggs and my Grandparents are adorable!

Basically our weight is like a defiant teenager that does whatever it wants and really likes extremes. We hate it. Moving on. 

7. Being sick is our full time job. 

Except we don't get lunch breaks, weekends off, or ya know… Paid. So excuse us if all we talk about is our pain and symptoms or tell tales of doctor appointments and surgeries. We don't mean to offend you with using words like urethra or regular mentions of pee. It's just like you coming home from your desk job and telling everyone about arguing with Linda from accounting over the last stack of post it notes. 

Basically everyone's face when I talk about being sick. Again.

6. We are flakeyer than a day old croissant. 

We never know how we're going to feel in advance, even 10 minutes in advance. We really want to get out of our sick box so we will make plans and more often than not we will cancel at the last minute. Don't be mad or rude about it, we'd give anything to feel up to going. Don't assume we're not pushing ourselves… just the act of making the plans was pushing ourselves. Sometimes we can manage to muster up enough energy to have you over but sometimes the idea of putting on pants and being out of our bed limiting our usage of the word urethra is too daunting. 

So sometimes all we do is this.... 

But other times we get to get out and LIVE! 

Which brings us to… 

5. Guilt is just as much of a symptom of IC, or any chronic illness, as the pain. 

No matter how much you all say you understand and just want us to take care of ourselves we feel guilty when we cancel plans. We feel guilty when people have to juggle their busy schedules so they can take care of our kids while we sleep or drive us to dr appointments when we're curled up into a ball of agony. We feel guilty when we're sleeping during the day, we feel guilty when our husbands have to work overtime just to pay rent because we can’t work, we feel guilty when our kids ask if the medicine we take will make our owies better so we can sit on the hard floor to do puzzles, we feel guilty when we push to do something fun but then are too exhausted to do chores. We feel guilty when we see our parents crying over seeing their baby so sick for the millionth time and when our kids have to watch movies in bed with us to spend time with us. I could literally make an entire blog with a never ending list of things we feel guilty for. Just so you know, you're not condemning or judging us for anything we haven't already ripped ourselves apart about. 

I'm so incredibly thankful for my Mom and how much she does for us, especially when I'm sick but I always feel guilty when I can't do things no matter how much I know that they have fun together.

Which goes along with...

4. We are not lazy, we are sick. 

We would give anything to be able to play with our kids, work at a job, clean our houses, cook for our families, help others that have helped us, be attentive spouses, do the hard work AND the fun stuff! Whether it's from sheer exhaustion, increased pain, or just too groggy and weird from necessary pain meds... We simply can't. 

We hate being stuck in bed or the bath or wherever, just miserable. We would much rather be doing something productive. Our houses are messy, our hair is unwashed, our cars are untuned… We can't do life when we're just struggling to live… Take what you can get from us. Be thankful when we do make dinner or do a load of laundry, it probably took as much energy for us as most people use up after a day of living busy life. 

The excitement when I feel good enough to not only do laundry but organize proves that it's not laziness! 

(Sorry that got a little punchy… This particular misconception really jingles my bells…) 

3. We already have doctors so we don't need one with a degree from webmd. 

We so appreciate how much you care about us and want to help find a solution. However. We're 1,000 times more desperate for answers. We've done way more research, we've read even more articles about studies and new holistic treatments, and we've probably tried them all.

Please don't claim that your brother neighbor's niece’s cat sitter struggled with our disease and is now symptom free after going on an all natural beef jerky diet. (Now that's a diet I could get behind…) 

Don't tell us to try acupuncture or ask “if they can do heart transplants why can't they do bladder transplants?” 

Nope they can't do transplants. If your IC is end stage and you have no choice but to have your bladder removed you get a bag. Full of pee. That you wear. For the rest. Of. Your. Life.

We don't need you to fix us. We just need you to love us, listen to us, support us, and hate what we have to go through. 

2. WE ARE NOT ADDICTS EVEN IF WE'RE DEPENDENT. 

We have serious pain that is regularly compared to that of a cancer patient. Our doctors determine our needs and prescribe narcotics accordingly. That should be enough said but as we all know, it's physically impossible for me to keep anything short so I'll continue...

I've never heard of an IC patient that enjoys the high of pain meds because we're using them for real pain. We hate the side effects of the drugs but find it a necessary evil to be a part of society or just to breathe normally. Most of us will trudge through the scary forest of withdrawals regularly because we refuse to take them unless they're needed. 

It's important that you understand that our bodies can become dependent and throw a grand tantrum when not fed but that doesn't mean we are addicted. Our tolerance does shift as the years and pain goes by so yes we will need to increase the dosage and it will vary dramatically. 

The excitement when I'm off of meds and feeling good... I even get to drive! 

So unless you have some good, concrete evidence that someone is abusing the drugs then assume we have it under control, we respect the drug and acknowledge its power, and we're using it as it’s meant to be used.

Most of all…

1, Unless there is a miraculous intervention or medical discovery, we will never be healed of this disease. 

I am a perfect example of this. I had crippling endometriosis and interstitial cystitis so I have my uterus, ovaries, and cervix removed then I had my bladder and urethra removed. You would probably think I am well now? You would be wrong. You can take the disease out of the body but you can't take the body out of the disease. 

There will be days when we feel good, maybe even great! Let us enjoy those days without the assumption that it means we're cured. Our pain and symptoms will vary. We may even go into remission but we will always have these diseases lurking around in hidden caves of our body waiting to strike. 

Please just love us when we're sick and love us when we're well… Don't put more pressure on us or make us feel like you would like us more if we were better. 

If all of this seems doable then welcome! Thank you for your friendship and for walking this journey with us… We will be loyal friends and incredibly grateful for your love but we will also cancel plans, talk too much when we're on meds, and show up looking as unkempt as a hobo. Thank you for reminding us we have something to offer and have worth of our own. 

Jump in! The water's fine!