Better.

What does the word better mean to you? The first two things I think of is Doc McStuffins and that weird wannabe butter stuff. Let us dissect that...

My kid has a disabled mom so we watch cartoons slightly more often than I would prefer but we try to pick educational shows and pat ourselves on the back when he spouts out the difference between a crocodile and an alligator or the definition of empathy. I've seen them all so many times that now I delve further into episodes and create deeper plots within plots. I have some written down... In Daniel Tiger I'm pretty sure X the Owl and Mrs. Pussycat are having an affair... Opposites attract, living in the same tree, single parents... I get it. Then in paw patrol, what's up with Alex? Where are his parents? I think if they were around more he wouldn't be making such poor choices all the time. Of course there is the age old questions about Mickey Mouse, why is Pluto like a real dog and Goofy can speak and wear clothes? Speaking of which... Why doesn't Donald Duck wear pants unless he's swimming? 

Doc McStuffins is kind of a mystery to me. Admittedly my child has an extreme aversion to "girly" things which would include Doc McStuffins in his mind so I haven't had time to analyze it fully, I'm sure there is some hidden plot in there somewhere. 

For those of you who don't have tiny humans controlling the remote, Doc McStuffins is a little girl who fixes toys... At the end she and the speaking toys (obviously) sing a song that goes "I feel better, so much better, thank you doc for taking all my ouchies away, I didn't feel so good until you fixed me up like I knew that you would." It's catchy. Anyway. She fixes the toys and they're better... Moving on. 

If you know me you know I love to cook and I love to eat. Both of which I love to do with butter. Real butter! Don't even try to give me margarine or any cheap oil based "replacement". Ew. I would rather have no butter than fake butter... Any time "butter" comes in a tub it's not butter and it's definitely not better than butter. The only, and I mean the ONLY, thing that's even worth mentioning about it is that it spreads nicely even if it's been in the fridge. 

So there is 1 teeny advantage of this suspicious substitute. It spreads while cold. Whoop de doo. Now... If someone on team butter replacement and I were debating which is better they would have 1 valid point. In one way it is slightly better but then I would rebuttals that if left out for just a while or even microwaved for a few seconds butter is also spreadable. It's also more delicious. Which always wins. 

So would the butter judge think that the one slight advantage is worthy of considering? I like to think not, but that weird guy that apparently spends his life defending butter replacements could still walk away saying that his weird non-solid, non-liquid substance is better than butter. Without me there advocating for the pure delight that is butter maybe he could convince those that are uninformed and undecided. 

He would be right. It is "better" than butter in one relatively inconsequential way so he could just say it's better without specifying it's only better in one way or talking about all the ways it's simply not better. 

Now that I've gone down a dark trail of distraction... Which was not the first or last time that will happen about butter... Let me get to my point. 

My UTI/ kidney infection is gone! Hooray! Also, I'm completely off pain meds! Hooray! Both are huge feats and way more exciting than straight out of the fridge spreadability. 

However... I'm still not better. I mean I'm better in two huge categories but you don't just get "better" in a couple weeks after being sick for most of your life. So I guess that's the question if the word better means you're doing less worse than you were or if it means you're totally normal now. I don't know. 

Here's what I do know.... I was able to drive myself to target the other day! But I was so weak and dizzy that I almost passed out in the baking isle. I was able to go to church and have my whole family over but I was so sore and exhausted for days. Each day has it progress and its setbacks. I am completely off narcotics once again but the withdrawals were heavy and thick for days. 

My muscles are very angry with me... My heart and mind are telling me I'm feeling "better" so I should get up and do life but then my muscles are like whoa where's the hurry?! I'm also exhausted all the time, no matter how much I sleep. Which reminds me, my sleep schedule is still all wonky from having to wake up super early in the morning to take meds. 

I would say worst of all my stomach is still so cranky! I don't know why! I really don't... Tuesday I was debilitatingly nauseated all day. My nausea patch had worn off so maybe it was that but it was not a good day, I didn't feel better. It just felt different than the last issue.  I'm also still having sweat inducing cramping and all over abdominal pain. 

Also. Have I mentioned I have a hernia under my biggest incision? So far nothing important has been trapped in there so we're just leaving it alone but it hurts when I use the muscles in that area to sit up or whatever.

  Aren't you glad you chose to read this?

So to answer the burning question... Yes, I feel better but still far from best. God has, and continues to, bless my family and me abundantly amidst the most tumultuous trials and tribulations but I'm still sick. I have a Urostomy, my body has been severely deconditioned, I have a very short ileum, and I've been sick for 15 years. Antibiotics are great but not magic... I still have some issues. 

However, I think God planted a seed of acceptance and I've started to accept that this is my life, some day it may change but for now we forge on with the idea that my body won't be well and perfect until it's renewed in Heaven. 

If you're a friend or family please be patient with me and understand that "better" is a lot different than "well". If you're an IC'er, empower yourself to be honest when people genuinely ask how you are and explain that even when you're doing better IC will never be gone. Lastly... Don't forget that I had my bladder removed and I'm still struggling with so many things. Please don't consider a cystectomy as an easy out! 

In other news... Happy Halloween from the Jovanovich Family! (Another example of excellent TV education, Wild Kratts and panda power!)

                       Panda Power!!

                      Our inspiration. 

Hostile Hospital

You'd think I'd be used to being in the hospital considering I can't even calculate how many days I've spent there, especially throughout the last 2 years... But I'm not used to it, I hope I never get used to it. 

Some experiences have been better than others but none have been great. I've realized it's more like being locked in a pastel painted prison than it is like staying in a sterile hotel room. 

The doctor is the warden and the nurses are his correctional officers. There are some gems out there that really do care and take the time to make their patients feel as such but for the most part they tend to take the easy road of no compassion. It's easier to pretend like the patients are just their assignments, not real people whose lives matter. So they dole out instructions and are quick to share their judgement on your choices all while leaving a sense of superiority in their wake. 

As a patient I have become a dependent of "the system". I'm told what and when to eat, when to shower, how much I need to walk, how much I should drink, what medications to take and what dosage, and even what to wear! They test my body as if they're searching for signs of drugs in my system.They document my every move, I'm known by my patient number and date of birth, and openly talked about like I'm a project to handoff at shift change. They poke and prod me thoroughly as if they're searched for contraband while asking if it hurts. Why yes, yes it does!  To complete the juxtaposition of feeling like an inmate working for my prison guard they put an alarm on my bed because they didn't want me walking around without assistance while my blood pressure was low.

However! None of that compares to the interrogation... I'm not sure if there truly are people out there who go to extensive lengths to try to convince doctors that they're horribly ill and in need of the doctors self proclaimed precious attention! I can't speak for those whack jobs but I can tell you that the LAST thing I want to be doing right now is lying in a hospital bed, draped in overly starchy sheets, exhausted from being woken up all night, full of compliance insuring drugs and missing my family and my life. So when they treat me like they're going to catch me in a lie and find out that I am actually healthy my blood starts to simmer. 

They all ask the same questions over and over, they clarify past test results, list the symptoms that I'm lacking, belittle the symptoms I do have, and question my misleading chipper attitude. 

Then they bumble around trying to find a reason to pawn me off on another doctor... Who then starts the process all over again. 

I spent 5 days in the hospital last week and I was worked over and over. The whole reason I went there to begin with was as directed by my doctors to get some IV antibiotics and smash this kidney infection that I've been battling for the good part of 2 months. 

After the hospital doctor tried and failed to find an antibiotic that would work he called in some pretentious infectious disease doctor who declared that not only was I not allergic to most of the meds on my allergy list I also did not have a kidney infection... Despite the white blood cells and bacteria in my urine, the extreme pain and nausea, the rank smelling urine and feeling just overwhelmingly sick. 

       My sad hives from the medicine I was clearly not allergic to... 

His basis of this conclusion was that when he thumped around my back it was painful in a broader area than just where my kidney was and because the antibiotics weren't working. He was very clear that that was his conclusion and I should trust it and move on. 

So there I sat. In so much pain and incredibly nauseous, with no antibiotics or other treatment plans underway. They were treating my symptoms but with the same meds I had at home... 

I spent most of my time resting, analyzing my symptoms, venting and complaining that I was in a hospital that only has UNsalted saltines... I pretty much concluded that only a moron who hated life and wanted others to be miserable as well would have created an unsalted saltine. It's textbook sadistic narcissist behavior! Why would they do that to the much beloved food mascot of hospitals worldwide?. I think it slanders the honorable title of the saltine because truly what is a saltine without salt

Anyway! After a 5 days in the hospital the doctor declared there was nothing more he could do for me and to follow up with my pain management doctor. I gave up, I surrendered to the system. They said I wasn't sick and they didn't want to deal with me anymore so I was vanquished. 

I have to tell you... I was in a real dark place there for a while. Being so miserable and then blatantly told that there's nothing wrong with you is just about the most confusing thing. I was humiliated and angry, I was questioning myself, I was so incredibly discouraged.

I just laid in my bed for a couple days in so much physical and emotional strife. One minute I was so scared that this was going to be my new norm. Then I was afraid that maybe I was so stuck in a world where everything was acute that I mistook the symptoms for something more severe. Minutes later I would be overwhelmingly angry that I was doubting myself. Then I would yell at my beloved family. Then I would cry. 

I had never been so miserable with absolutely no reason why and no possible treatment, I couldn't accept it. So I decided to go to my primary care PA. He knew me, he had treated me for bad infections in the past. 

I was surprisingly nervous as I waited to see him but the moment he came in and started talking I knew he was on my side and that's all I cared about. 

He had read the reports from the hospital which blatantly said it was either all in my head or I was just there for drugs. That crushed me for a minute. I felt the red hot sear of humiliation and anger. 

Thankfully he knows me well enough to know that's just hooey! He also looked at my urine culture, which the hospital doctors didn't even bother to read because they thought it wasn't valid for someone who has an ileal conduit (a piece of intestines as a part of the urinary tract), and discovered I actually had two kinds of bacteria in there! 

So what had been happening was that I would get my urine tested then they would start me on one antibiotic which would kill the one bug then when I wasn't getting better they would test it again and see another kind of bug so they would stop the original antibiotic and start me on a new one... They went back and forth for 2 months never finding both kinds of bacteria at the same time! 

So when that dipstick infectious disease doctor was so sure that it wasn't an infection and took me off all antibiotics my urine test finally showed both bugs!!! 

My amazing pcp felt sure that a big round of a mix of two kinds of antibiotics would do the trick! Of course I'm allergic to one of them so I have to take Benadryl and I'm drowsy but what's 10 days of sleepiness if it means healing! 

I'm only in the middle of day 3 of this course of antibiotics and so far I'm just feeling the tummy troubles of taking a bucket full of antibiotics but I should start seeing a difference soon!! 

If not, there is a plan b... An aggressive round of antibiotics that would be a shot a day for a week which are apparently pretty unpleasant. 

Then after I'm feeling better and I finish either treatments he wants to test my urine again and if it's negative for bacteria then we will know we can trust cultures in the future, if it's positive we will know to trust my symptoms. 

Sheesh... What an ordeal! I'm so thankful to be on this side of things... I don't think anything has ever affected me quite so fiercely emotionally. I was in a really dark place for a few days... 

So my advice for the day... When in doubt, trust your instinct and get a second, third or fourth opinion until someone at least respects and acknowledges you and what you're going through. 

Oh and to end on a happy note... I just got our family photos that we did a month ago and isn't my child one of the most adorable creatures that ever lived?! (Oh and... Isn't it impressive how healthy I can look when I'm so sick!)

#UTI

I planned on writing blogs detailing everything that has happened the last year in chronological order except I'm currently going through one of the most difficult battles of this whole mess and I always feel like I can more accurately describe things while I'm in them so I have fresh indignation and hatred. Or so I can be more specific. Hard to say which... So. Enjoy the rant disguised as a blog. 

We are smack dab in the middle of this techy generation full of abbreviations and acronyms But i am pathetically and perpetually confused. I seek counsel from my ever wise and knowing 16 year old niece on all things trendy for which I'm truly #blessed. Although imo, smh, dm, jsyk, and ikr mean next to nothing to me there is one acronym that I know all too well, the dreaded... UTI. Or for those of you that either aren't as hip as me or are just much healthier it's a urinary tract infection. 

Back in the day when I had a bladder I would wish on a shiny penny that my IC flares could be explained with the news that I had a rare UTI because it meant that there was a reason I was suffering more than usual and I, for once, had a problem that had a relatively easy fix... Unlike my overuse of punctuation which unfortunately has no cure. 

Now, most people probably assume you can't have a UTI when the majority of your urinary tract is missing. Well they're wrong. I do not have a urethra or a bladder but I do still have ureters and kidneys. Both of which are more than happy to get infected! 

The problem is a little UTI that would normally be horrific and painful but easily treatable could be life threatening to someone who has such a botched urinary tract as myself. 

First of all, I don't see the early signs of infections like increased bladder pain or burning when urinating for obvious reasons so by the time I realize something is going on I am lethargic, nauseous, having all over abdominal pain, have a fever, flank (mid back area) pain, and the old familiar but peculiar feeling that I have to pee! 

When I finally realize there might be an infection I have to rush to have my urine tested since I know I already have a late start on things. However, I obviously can't just pee in a cup but I also can't pour some of the urine I carry around in a glorified fanny pack into a cup because it would be contaminated by bacteria in the bag. So I have to take my bag off, clean my stoma and then wait for the urine to drip into the cup. Depending on how much I've had to drink this can take up to 30 minutes... I have no control over my urine flow so I literally just have to sit there all awkward hunched over the pee cup, covered in a towel in case it spills and wait. This would hypothetically take longer if I got distracted by trying to see how high my urine fountain could go, I don't know that for sure, I'm just saying hypothetically. 

Once they have the hard earned urine they can't just do a regular dip test because the piece of intestines that makes up my ileal conduit still has bacteria in it and the dip test will always show positive. So they have to solely rely on the culture results, which takes 2-3 days, to see if I have an infection and if so, what kind of bacteria is it and what antibiotic will it be sensitive to.

For me the challenge continues because I have an extensive list of allergies so they have to find one that I'm either not allergic to or I have to take Benadryl around the clock to prevent a reaction while taking the medication that I'm allergic to.

Which is what's going on right now... So as if the morphine and phenergan for the pain and nausea from the infection didn't make me sleepy enough let's dump in constant doses of Benadryl. I'm to the point where it doesn't knock me out it just makes me sooo tired and anxious! Every noise is too loud, every thought is too overwhelming and every person is too annoying but if I don't take it I get an itchy rash all over like I rolled around in some poison ivy. Not that I've done that but I imagine if I did... I'd be itchy. 

So here I am. I've been on the antibiotic that I'm allergic to for 10 days. Some moments are better than others but I'm still really sick. There are a few possible explanations to this frustrating dilemma. 1. The infection is so bad that it's truly needing every dose of the prescribed 20 days of medication. 2. Because I've been on this particular antibiotic so many times my body and the little mutant bugs inside creating chaos have become resistant to it. 3. My body is just taking its sweet time to get back to normal after such an aggressive infection. 4. It's all in my head. 5. The aforementioned mutant bugs are making me think I still have a UTI so I will feed the little cannibals the antibiotics they crave. It could literally be any of those... 

So in the meantime I'm left with the question of what do I do?! It's been 2 weeks since I sent in my urine sample and things continue to erratically get worse and stay the same. I went to ER last week when my heart rate was consistently over 100 bpm and my pain and fever were soaring as well. They did all the tests. Everything showed up as expected. They gave me an IV dose of antibiotics and sent me home on the same itch inducing meds I had been on. I still haven't heard the culture results yet but those aren't always conclusive after I've been on antibiotics because some cruel twist of misjustice can cause the otherwise ineffective antibiotic to show a false negative culture on my urine. 

So. What to do? I've been sick for 2 weeks. Like really sick. In bed all the time and once again missing out on life! 

Well, I did rally all my energy and took lots of meds so my hubby and I could take our kiddo, Titus to the circus for his birthday. I was on edge and drugged up the whole time, I was even seeing a lady hanging upside down from a curtain, an elephant playing the harmonica and dogs doing a conga line... Oh wait. Maybe those things were real. Hard to say at the circus but I hope Titus just remembers the fun and that we were there as a family and not my questionable mental state... 

Last time my infection was this bad I ended up getting admitted to the hospital but I don't want that... They don't even really know what to do with me there but my doctors are at a loss. So as incredibly ironic as it is... I'm going to my old, faithful urologist tomorrow. I never guessed I would need a urologist when I no longer had the equipment she usually works on. It's like a car showing up to the mechanic without an engine... I guess there are still bits to work on but it's just a little strange. Anyway. Hopefully she knows some out of the box antibiotic to try or maybe even has some advice to prevent future infections. 

In summary... If you're prone to UTI's, you will likely still get them even if you don't have a bladder. Further evidence that IC is not greater or less than life without a bladder. It's equal.

(P.S. I'm having such a hard time getting back into blogging! What I could have cranked out in a couple hours back in the peak of my blogging days took me days to write. It's also lacking some of my confidence and easy whit but bear with me and hopefully I'll be back in fighting shape soon!)

I'm back!

Hello readers!!! Oh how I've missed you guys!!! I can't believe it's been a year since my last blog... I guess it doesn't feel like that because I never stopped writing blogs, I just haven't posted them... So maybe that's not a blog post so much as a diary entry? 

I stopped posting them because I felt like I was becoming a poster child for radical cystectomies for Interstitial Cystitis. These beautiful women who were overwhelmed by suffering and desperate for relief saw this as a possible way out! Whether they were just diagnosed or old timers, the idea of getting rid of the organ that tortured them every moment of every day was very appealing! 

However, being someone who's choice was taken from them and was forced to have this incredibly major and life changing surgery I can't stand the thought of anyone doing this simply in the hope that it will alleviate symptoms, especially after any misleading encouragement from me!

Also, I felt like I didn't belong now that I technically didn't have IC or a bladder anymore. I didn't think I could gain from or give to the other IC'ers anymore... 

So I thought I should just stop sharing my story... I retired the blog and left the IC community. Unfortunately I didn't know at the time that my story was about to get way more interesting and probably would have been very eye opening to those that thought having a RC was an easy way out.

Well now here I am... A year after abandoning my post, 16 months after having my bladder removed, 13 years after being diagnosed with IC and I still miss my community. I miss the unfortunate bonding over similar miseries, the dark humor that no one else gets, the  advice given and received, the drama (who doesn't like to sit back and watch some juicy drama you're not involved in?) and most of all the friendships that were built out of pain but flourished into beautiful connections that far exceeded our physical despair. 

Also, practically every day I feel an undeniable pull on my heart towards this blog. When I pray and ask for direction in this crazy, unusual life of mine God brings this blog to my mind every time. He continues to push me towards it... I don't know why this is what He wants from me but after months of unsuccessfully trying to convince Him to maybe choose a new avenue for me, I finally gave in. Thankfully it didn't take me getting swallowed by a giant fish to finally comply... 

So. I'm back. 

I'm here to share my journey. I know it's different than most of my IC readers and I still don't want to scare the freshly diagnosed but unfortunately radical cystectomies and urostomies are very real possible outcomes for people with untreatable, end stage IC. 

 My dear blog still receive daily views and comments, reaching almost 60,000 total views but I had closed myself off from it. I disassociated with it because for some reason it just brought such strong feelings of grief and loss.

Except that when I started this blog 2 1/2 years ago I said if I helped just one person by sharing my journey it would be worth all the transparency and heart I poured into it. I forgot about that.... 

So, I'm choosing to reinstate the declaration I originally made and once again open my life to my readers in the hopes of encouraging or positively influencing just one person. 

In the coming days I will give some brief recaps on all that has happened in the last year... Although if you've read any previous blogs you know I don't do "brief" real well and I have a LOT to share... So I will post some updates of undetermined lengths... 

Thank you for hopping aboard and joining me on this snarky, overly detailed, highly dramatic, sappy, brutally honest and real journey of my life "after IC". I hope you can see my heart and accept me back as I am. 

One more thing...

I’m coming out of retirement for a minute. I have to set something straight and instead of continuing to write posts trying to sum up everything I thought I would just write one more blog…

I have a problem. Somehow after all this mayhem and ridiculousness I have gone through I have been placed behind thick Plexiglas and put on display as if a scientific marvel at a museum. People who have been battling hard with IC suddenly see me as the “lucky one”, the “survivor”, the “one who conquered IC”. They think I’m living this grand life now that I “don’t have IC”. Now that I’m “healed” I get to live this life that we’ve all wanted to since they day we were diagnosed.

I’ve tried to be open about my hardships post-op but they don’t want to hear it or believe that it could be any worse than what they’re going through right now. They’re sure that what I’m going through is “for a purpose” and is “just temporary” and will be “all worth it soon”.

So I’ve stopped talking to people with IC frankly. I love these women so much. I was one of them for so long but I was being unintentionally put down and shunned by them. Some of them still cared because we had built a relationship outside of our diseased bladders but the majority either didn’t care anymore, just wanted to know how things were going for their own purposes, or… this is the best… were jealous of me.

Anyone who has been close to me throughout this horrific recovery, which admittedly isn’t many people, know that there is absolutely nothing to be jealous about. My lovely naturally wavy hair that usually does itself- sure. My hardworking, good looking hubby- you bet. My ability to make fried chicken to rival any Grandma- now we’re talking. But why in the world would anyone be jealous of my current life, I have no idea? The only thing. I mean the ONLY thing that the women on the other side of this disease have to be jealous of me about is that I can eat whatever I please. BUT. I’ve been so incredibly sick the last 4 months that I haven’t been able to enjoy eating at all. More on that later.

When I was miserable and waiting completely impatiently for surgery I talked very highly about the life after surgery, I basically plated it in gold and hung it on my wall to give me strength to get through what I needed to. So maybe these women think I’m living the life I wrote lavishly about, the life I still dream about having some day. Maybe they truly just don’t understand…

The thing is… This surgery that I had almost 4 months ago has a huge recovery that lasts anywhere from 6 months to a year. I’m not even close to the finish line right now. Each day I have improvements, stalls, setbacks, re-do’s, triumphs, failures, new goals, new hopes, and new focus. It’s not all bad but that doesn’t mean it’s all good.

Even a year after surgery, even two years after surgery, I will not be normal. I will not be this lady who once had IC and was miraculously cured. I will be a lady who doesn’t have a bladder, who got out of the war of IC alive but who lost her bladder. I will wear a bag every single day for the rest of my life. I will worry about my stoma and my skin around it every day. I will stress every pound gained or lost for fear of it affecting my stoma. I will be aware of each ounce I drink, hoping it’s enough. I will have my bag fail, because after all it’s just plastic, and my stinky, mucus filled urine will spill. I could keep going but I have more to say about other things…

I was diagnosed with IC when I was 14 years old and for 12 years I was in pain and dealing with the crazy symptoms every single day but no matter how horrible it was it didn’t fully consume my life until this year. It was December 30, 2013 that I had my interstims removed and botox injected into my bladder. I woke up from that surgery and was never able to pee on my own again. My bladder stopped working. At first I tried catheterizing myself but it kept getting stuck and I would have to rip it out shredding things on the way out. Then I had multiple foley catheters, the basic kind you have at the hospital, that caused several, severe bladder and kidneys infections. Then I had a suprapubic catheter placed. It went straight into my bladder through my bikini line area. It wasn’t anchored or sewed down in any way so each time I dropped the pee bag I toted around it literally tore the hole it was coming out of, if I moved the bag wrong the urine made a hasty return to my bladder, and the inside of my bladder was aggressively damaged by the part of the tube that was inside.

Each of those methods had their benefits and downsides. They all caused indescribable, white hot, stars twinkling around my head, breath-taking pain. My bladder had finally failed me. It was not functioning in any way. After 4 months of trying these alternative urine draining methods my doctor and I knew that my body couldn’t handle much more. I was taking more narcotics that anyone could believe, I was in bed 98% of the time, I couldn’t take care of my son, I couldn’t leave the house… my bladder had not just died but it was taking my life with it. I was alive and most likely it wasn’t going to kill me, unless there was an uncontrollable infection from all the catheters, but each day I was losing my life a little bit more.

So my wonderful doctor admitted she had done all she could for me and sent me to the University of Washington to the premier Urologist in the state for bladder removals. He primarily treated patients with bladder cancer and was kind of taken aback by me at first. He didn’t know what to do with someone who needed their bladder removed when it wasn’t really trying to kill them. So he listed several risks and reasons NOT to do the surgery and then sent me on my way to meet with some other specialists to verify that this was truly my only option and for me to get more information.

I did as he requested and then came back a few weeks later even more desperate and terrified. I went into his office not sure what he was going to say but after consulting other specialists and thinking about it more he knew that although this disease wasn’t truly going to kill me, I wasn’t living. I was so young, just 26, and I had so much life to live and I could not spend the rest of my life how I was. He and his medical team realized it wasn’t a question of if I was going to have this surgery, it was a question of when. Removing my bladder was my only option. I had a dead organ in my alive body and we had to remove it.

There was no convincing needed from either side because it wasn’t a question of opinion. This needed to happen. It wasn’t to better my life or relieve my pain, it was to continue my life.

Fast Forward to today, almost 4 months after surgery. I haven’t had any of the life threatening side effects that are always a possibility with this huge surgery. Yet it’s been the hardest thing I’ve ever gone through in my entire life… Just imagine what it would be like if any of the major risks would have happened….

Adjusting to my stoma and all the urostomy things has been a challenge. There is so much I still don’t understand and each time something weird happens I freak out until I find out whether it’s normal or not. The stitches just dissolved around it recently but before that, every time I cleaned the area it would pull them. I am still trying to find a wafer that works with my sensitive skin so it constantly feels like I have duct tape over brand new sunburn. I’m always having issues with my bag and my night bag connection and I spill urine almost every time I hook and unhook to it. I have to clean my bed bag every day, change my bag every 3 days (assuming everything is going well) and drain it several times a day. I am still learning the best way to do it all. My urine reeks to high heaven and is full of mucus because the piece of intestines that they recruited for the conduit still thinks it is intestines so it creates a disgusting thick egg-y junk that clogs my bag.  Plus I still hate the way my stoma looks, I stare at the pulsing piece of intestine sticking out of my stomach with the chunky, mushy urine coming out and I am repulsed by my own body.

One of the biggest risks of this surgery is having bowel problems and that is one thing I have dealt with in full force. My digestive tract is still so annoyed with being messed with that it throws a great temper tantrum regularly causing severe abdominal cramping, constipation, diarrhea, and blinding nausea. This started the day after surgery and is still blazing with full force. I will be minding my own business when BAM it comes on out of nowhere having my running to the bathroom or bent over in agony.

When they removed my bladder they also removed my urethra but were able to save my vagina. However... in doing so… they had to use the roof of the vaginal canal to stitch shut the area that was once my urethra. The pain in my pelvic floor is still, 4 months after surgery, way worse than it ever was before surgery. It’s different but worse. I can’t sit in a normal chair or wear underwear without severe pain. Recently I started having green discharge that I thought was stitches coming out but it hurt so incredibly bad that I got it checked out only to find out I had a bad infection down there and it was some kind of weird calcified bacteria. My whole vulva and vaginal area is covered in irritation and open cuts leaving the whole area just raw.

Since I’ve basically been bed ridden for a year my muscles have weakened to an extreme level. So when I started doing physical therapy I had to relearn to walk. I also have been in pain for so long that my muscles are so tense we have to retrain them to relax. My body is so used to pain that I flinch at the very lightest touch from anyone. Each week we make some progress and then something happens… like this vaginal infection… that sets us back a few weeks. The most I’ve been able to do is do some stretches on an exercise ball, work on my balance, start strengthening my core, and just get me used to moving and touch again. I’ve been doing physical therapy with an amazing therapist who knows what she’s doing for 4 months and we are still really just at the beginning of my treatment.

Just this morning I laid in my bed curled up in a ball hurting literally from my toes to my neck. On Sunday we had my family over for my son and my Dad’s birthdays so I pushed my body hard and I’m paying a high price for it. My muscles ache, my back keeps slipping out of alignment, my toe curl up and my shoulders are at my ears from tension, my stoma throbs, my vagina burns and aches… It’s so overwhelming. It all hurts so badly and I have such a long way to go.

I could go on and on and on and on and on but I think you probably get the picture. This recovery really sucks.

I hate this.

I hate every single day.

I think about if this was the right decision and even though I truly had no choice I still wonder what would life would be like if I didn’t do it.

I’m not cured of IC… IC just beat me. I lost to it. It battled 13 years for my bladder. Finally I gave up, IC won and took my bladder as it’s prize.

So don’t you dare say I’m lucky, that you would give anything to find a doctor that you could convince to take out your bladder. Don’t even say that I made a brave decision. I didn’t. The word “decision” implies that I chose this and I didn’t. If I had any other option I would have taken it in a minute.

I don’t care that I can drink wine and eat salsa because I don’t even want to go down the stairs to the kitchen, much less eat!

Don’t get confused by my pictures on facebook of me looking healthy and normal. I’m still in bed 75% of the day and have to force myself to push for my family and my sanity. Every moment of every day is hard.

I left the world of IC because I was sick of being put on a pedestal and becoming a mascot for bladder removal. I wouldn’t encourage anyone in the world to do this until it was absolutely necessary. I’m talking… until you can’t: get dressed, drive, be home alone, go a few hours without heavy narcotics, pee on your own. Hold onto that bladder and to hope until you literally cannot any more. Find a doctor you trust with your life and if they say you aren’t there yet then celebrate! Live when you can. Wear whatever you want because you don’t have a bag full of stagnant, rancid, chunky, mucus filled urine hanging off of you.

I’m not saying that IC is better than this life I’m just saying it’s the same. So don’t make this MAJOR decision lightly. Don’t treat it like a bad tooth that needs to be pulled. This is an organ you need and use all day long and I guarantee as much as you hate it, you will miss it when it’s gone.

To save myself from being driven further insane I have decided to leave all the IC groups and separate myself from that disease that conquered me but don’t you dare think that it’s because I’m living a charmed life. Don’t end up where I am until you have to be. Make this decision very carefully and thoughtfully and do not think that once your bladder is gone you will live a normal life. Make sure your support system is ready for the new strain, new pain, new heart ache, new disgust…

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..

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(I hate writing blogs like this one… full of negativity and horrors but someone had to talk about the realities of this major, life changing side of effects of this surgery. I love all my readers and want all the best for every person with IC. I continue to pray that there will be a cure or even an effective treatment for interstitial cystitis.)

After posting this I recieved quite a few angry or confused message from IC patients so I clearly need to clarify further.... This is NOT directed at any one and I’m not mad at anyone for saying anything. I just get concerned when people say certain things because it makes me think they don’t understand what a HUGE, life changing thing this is. I don’t want people to think that you can simply get your bladder removed and then POOF! You’re magically healed! That’s so not the case. I appreciate all the love, support, care, and concern from every single person in the IC community and even if I get miffed at times about little things I still look at my time with all of my fellow IC sufferer’s as a very positive and healing experience. Like I said in the beginning of this blog… Some of the friends I’ve made through the support groups are friends that will stand the test of time and life changes. I treasure those relationships because they are about so much more than our similarly diseased bladders. Again, I really meant this blog to be helpful and informative, not condemning or shaming and I hope that it will be received as such! Love to you all!!!! 

The End of an Era

Interstitial Cystitis has been such a huge part of my life for so long that in some ways it has defined me. I have been known to chant “I have IC, I am not IC” while standing on my biggest soap box and waving around a flag with a cartoon bladder (metaphorically speaking of course, what do you think I’m a lunatic?) but no matter how much I wanted my stance to be true it really wasn’t. I don’t know what determines your most defining trait in life. For some people it’s their job, their title, their relationship, or their family but for me it’s always been my illness. I’ve been known as simply the “sick girl” by many people. This disease has forced itself to the forefront of my life so in many ways that is what my life has become. My IC. 

Since starting this blog over 2 years ago this definition of me has only deepened. I found myself fully immersed in the world of IC. Many of my best friends were women who also struggled with IC, a good majority of my friends on facebook were fellow IC sufferers, I was involved in multiple IC support groups, I wrote about IC, I talked about IC, people asked me questions about my IC, and so on. I couldn’t escape it.

Whether I liked it or not, I was my IC…

However, as with anything, being defined by just one thing can be risky. Once that changes or ends you are left undefined. Since my radical cystectomy (total removal of my urethra and bladder) 3 months ago I have found myself confused as to who I am. If I was my IC and I no longer have IC then where do I fit, who am I?

I’ve considered writing and posting updates about everything that’s been going on in my recovery and my life but I am confused because my blog is about my life with IC and I do not have a life with IC anymore. I have been miserable, confused, scared, alone and all I wanted was to talk to the ladies in the multiple IC support groups but I don’t have IC anymore, I don’t belong. I even feel unwelcome in the IC support groups that I started and once moderated, how could I talk to them? It wasn’t the same anymore. What is a support group if not a group of people who are going through the same challenges? 

So I am in this weird limbo, a purgatory of sorts. I don’t have IC anymore but I’m far from being well. I am still in the deep trenches of recovery but I don’t have any bladder symptoms anymore.

I feel like a nomad looking for a place to settle and call my home. I would really like my home to be wellness but I’m a realistic sort and try not to give in to lofty goals. I believe I will be well some day but most likely later rather than sooner. 

When I started this blog it was really more to update all my loved ones on my health in one fell swoop and although it exploded from there I know that my most loyal readers aren't sufferers of IC but people who love me. So, even though this has hardly anything to do with IC here is just a quick update… 

Everything is pretty much on schedule. It’s been 3 months since surgery and I can see a little progress each week but I’m still dealing with lots of things that go along with such a major surgery. I get horrible cramps that leave me bent over and gasping for air. I have lots of pain all over my pelvic floor area from the massive remodel the doctors preformed. I get shooting pains in my abdomen regularly. My stoma is still adjusting to its new job and fluctuates a lot. I am still getting used to having all the ostomy supplies attached to me 24/7 and I struggle with trying to find the perfect wafer for me. I can look at my stoma with hardly a twinge of repulsion, I can change my bag and wafer by myself very easily now. I haven’t had an ounce of “phantom pain” or anything like the pain I dealt with for 15 years before this surgery. I am down to 2 narcotics a day but I am hoping to start the process of weaning to 1 a day soon. I have chronic nausea that I’ve always had and new bowel problems that I’ve never dealt with. I am still getting used to my body’s new extreme need for lots of fluid and I disappoint it most days with not enough. I can walk and do most things on my own now but I still can’t lift anything above 20lbs. I am always exhausted, whether I’ve had 3 or 15 hours of sleep in a day I can never shake the desire to cuddle in my bed and sleep. It's very unpredictable when I will feel okay and when the pain and exhaustion with overwhelm me.  When I started physical therapy I could barely walk, do exercises, or even be touched without extreme pain but now I ride the bike for 10 minutes each session, do multiple exercises, and I can even withstand manual work that helps my tense muscles relax. I have wonderful doctors and a fabulous God given gift of a physical therapist.

So it's an interesting time full of a thick combination of challenges and triumphs. It's similar to my incisions… They’re healing and looking better every day but they are still bright red and very tender to the touch. Some day my scars will be barely noticeable and I will be healthy and full of wonder of my new life.  

Truthfully I feel like if I had not been so sick and miserable for so many years I would be on the verge of being murderous but comparatively I'm doing pretty well. I just feel a heavy weight of expectations from myself and my loved ones. I feel like there are so many expectations of me. This surgery was supposed to give me this grand, healthy life and 3 months later I’m only a little bit ahead of where I was before surgery. I push when I can but there are days and things that I truly just cannot do. It’s disappointing and frustrating for everyone. 

December 30, 2013 was when my IC went from bad to unmanageable. My bladder stopped functioning, it was in full retention and the pain was truly unbearable. So when I say this year I literally mean all of 2014 has been about my pain and broken body. I have been telling myself to just let 2014 be a year of recovery and healing but it’s difficult to just take the moments as they come when the moments are so painful. My hope is that by 2015 I will be well and mostly recovered. They say its 6 months to a year to recover from this surgery if you started out completely healthy before…Which I obviously didn't. No one is expecting me to be living a normal life yet. I just have to remind myself of that from time to time. I’ve had 29 surgeries before this one that were 6-8 weeks of recovery so it’s easy to forget that this is a totally different situation. 

Clearly I am in a new stage of life, I no longer have a chronic illness I have an acute recovery that will be over some day. Now that I’m in this new phase of health I have decided to retire this blog. I will leave it up for people in the future who are fighting battles that I’ve fought before them. I will check it occasionally and try to answer any questions that I can. What I was struggling with 2 years ago and is completely irrelevant to me today is what someone else is trying to conquer right now. I’m humbled by the fact that “How IC It” still has daily views and regular comments. I love this blog like a child that I birthed and raised but like with a child, you have to know when to let it go. I have held nothing back along this journey but my struggles and triumphs are just not relevant to this blog’s platform any more.

When I started this blog one long, painful, lonely night over 2 years ago I never could have imagined that it would have 40,000 views from readers all over the world. I never could have guessed how many people would call me brave and selfless for sharing my story. More than that… I never in a million years could have predicted how much it would help me get through, cope with, laugh off, and fight.

This blog has done so much for me. It gave me a voice when things seemed too unjust to bear. It gave me a purpose when I felt completely useless. It gave me perspective when my typing fingers wrote what I didn’t even know I was thinking. It gave me a support system of other IC sufferers that I could have never built on my own. It gave me a place to write when I just needed to sort things out. It gave me a way of communicating to the masses when I couldn’t handle talking about heart wrenches obstacles over and over. It gave me confidence in my ability and gift of writing. 

I could go on for days… This blog has been an amazing, life changing gift to me.

I’m so thankful for all the encouragement and support of every single reader, whether you’ve read one blog or every single post. I guarantee I would have given up on this long ago if it weren’t for all of you... Thank you for forgiving my long rants, my innumerable complaints, my typo’s and errors, my dozens of pictures, my distractions, my wanderings off subject and blogs that made little sense to anyone else.

I have this vision of me in a deep pit (like on the Pooh movie, yes I have a toddler) and you all are at the top all lined up pulling a rope lifting me out. Not just once but over and over. Most people would have tossed me a ladder and told me to stop getting in the pit or figure it out on my own but you all put your own selves into saving me so many times. Thank you.

Lastly, September is IC awareness month, find your favorite blog of mine and share it on facebook or twitter. Tell people about this horrible disease and even donate if you can. I lost 15 years of my life and my bladder to this horrible disease and there is a huge need in this community for research and treatment options.

I have some ideas of writing projects to take on next, keep an eye out! Until then... over and out, see ya later alligator, au revoir, adios, farewell, hasta la vista, peace out, arrivedercie, cheers, bonjour, ta-ta, Godspeed, goodbye, take care… 

As all good things must...

At the end of something extraordinary there should be such pomp and circumstance that people all over the world feel it and celebrate without even knowing why. However the most humble people create the most extraordinary things so often times these endings go with barely a flash of festivity.

I have desperately searched the most creative corners of my brain for something that I could do to celebrate this occasion but as the day draws near I am left with nothing because even my best ideas seemed inconsequential to such a momentous time. Rather than trivialize it with a plate of cookies or a jar of jam I thought maybe I should keep it simple, for once, and write a little tribute about this remarkable man and his phenomenal career.

On May 21, 1987 my Mom labored and then literally pushed me into the hands of Dr. Dennis Brown. It was obviously a good day for me but for him it was just an ordinary day like any other. I was just one healthy baby among thousands that he helped welcome into the world throughout his career.

My Mom and me

However our journey didn’t end there, not even close. 12 years later I starting having pain that my immaturity led me to believe was my stomach. After seeing a few other specialists and finding nothing that could cause the intense pain that stole my breath my Mom decided to take me to see Dr. Brown.

As any 12 year girl would be, I was terrified for my first appointment with the “woman doctor”. I literally recruited my sister to tie me to a tree in hopes that my grand gesture would convey how desperately I did not want to go. Of course that didn’t work because I have a good Mom. She told me all about what might happen and how kind the doctor was but I didn’t care one bit. It all sounded positively horrible.

I sat in the waiting room watching the fish in the obligatory waiting room fish tank just dreading the moment they would call me back to meet this… Man... With no help from the fish or my Mom I knew there was no getting out of it. Finally I was called back and the nurses kindly reassured me everything would be okay. I was still not convinced.

As the heavy exam room door unlatched, clicked and squeaked open I knew the moment had arrived. In walked a smiling gentleman in a white coat. He was middle aged, tan, and had a smile that went all the way to his eyes. He didn’t have me change into a gown or even sit on the exam table. He sat by my Mom and me and he used his perfect bedside manner to gently pull my guard down and get me talking. Suddenly it wasn’t scary anymore. Not long after that, he had my total trust.

After some tests and procedures he officially diagnosed me as his youngest patient to have endometriosis, actually I think I still hold that title! Together we started the journey of dealing with this incredibly painful, chronic disease. So many office visits, treatment attempts, and surgeries made me a frequent flyer patient.

Throughout my already difficult teenaged years he treated me with the utmost respect, I was Deni… Not Endometriosis. No matter the complications, issues, or frustrations he stayed steadfast and confident in his treatment plans while still remaining completely open, even excited, to try new things when others weren’t working. Unconventional and ground breaking treatments were things he embraced with giddiness while he still relied on the tried and true regularly.

Just over 10 years after that first nerve wracking appointment I went into his office again but then with my husband instead and I was declaring that we were ready to start a family. I think he knew it was going to be a hard road to get my dysfunctional body to perform the gigantic tasks I begged it to but he once again made plans and reassured me it would work out. After a long, emotionally draining, physically brutal year in which he was by my side the whole time it was his nurse that called to confirm that it finally worked. I was pregnant.

My pregnancy felt like anything but the miracle that it truly was. I had hyperemesis gravidarum meaning I was nauseated from the word pregnancy to the word delivery and vomiting was more regular than eating. Dr. Brown didn’t let up then, if anything this gargantuan challenge was for both of us and I couldn’t have asked for a better team mate. Thanks to his necessarily aggressive medical and emotional support, I got through it.

The circle was complete on September 12, 2011 when he pulled my healthy, chubby cheeked son out of me via c-section. He delivered a baby of a baby he had delivered 24 years before that. Awesome.

Me and my brand new baby boy

After that my health took a turn for the worse and he guided us again as we tried to get my body to do what it was meant to do just one more time to have a second baby. When it was finally, unmistakably clear that my body couldn’t handle another brutal pregnancy he was with me, mourning the loss of a baby that wasn’t even a cell… Just a dream.

However, his encouragement, care, and skills were never more displayed than when we agreed it was time for a total hysterectomy at age 26.

He is a rare, genuine gem unlike any other doctor I’ve ever come across. He shares his life with his patients and becomes a part of his patients lives. He knows and remembers things about his patients that aren’t written in their chart and can only be cultivated through a long, genuine relationship. He listens when we talk, he answers questions we didn’t think to ask, explains and demonstrates things in a way anyone can understand, and he goes above and beyond the call of duty. He created a different, safe, personal world within the otherwise sterile confines of healthcare

More than anything he cares for each and every one of his patients. From the young, newly pregnant moms, to the women he shepherds through the many changes of womanhood, to the baby he watched over since the size of a pea.

I would be devastated as the day that Dr. Dennis Brown will hang up his white coat and stethoscope draws near but I can’t think of one person in the world that deserve a long, happy retirement more than him. After years of selfless service and care it is time for him to enjoy the family he has shared with us through proud updates, stories and pictures and for his family to finally get to fully enjoy this wonderful man after sharing him with all of us over the last 40 years.

Dr. Dennis Brown, you are loved and appreciated by so many! My family and I especially want to express our greatest gratitude and appreciation for everything you have done for us all throughout the last 30 years. You have helped, healed, saved, created, and delivered so much to us. 

You trusted me, you listened to me, you talked to me, you laughed with me, you cried with me, you taught me, you healed me, you cared... 

You’ve done well. Now go, be selfish and frivolous! Enjoy life just like thousands are doing because of you!