No more Mrs. Nice Girl!

I have a serious problem… I’m cheerful. I know that traditionally isn’t a problem and is actually a desirable quality. Most of the time being a generally happy person is one of the very best things about me but sometimes it becomes one of my least favorite things about myself.

Picture this… You’re a doctor and there’s a young woman who is laying on a gurney in your emergency room  or sitting on the exam table in your office. She is telling you that she has a very dysfunctional bladder, debilitating symptoms, and staggering pain yet she’s friendlier than most waitresses. She’s smiling, laughing, making jokes, chatting with the nurses and assistance like they’re long lost friends, and even apologizing when she inconveniences any of you.

Confusing huh? Well that’s me 90% of the time. I swear to you on a gallon of ice cream that the pain and symptoms are as bad as I claim yet I can’t turn my dang nice sprinkler off. It’s just on a certain setting and no matter the circumstances it can’t be shut off.

So the perplexed doctors don’t know what to do with me. One was convinced I was bipolar and needed intensive therapy because no one could be this cheerful with all the horrors I go through. Some doctors appreciate it and tell me how well I’m handling the situation. But unfortunately the most common reaction is disbelief. 

Apparently they either think my auto-kind is phony or that I must be lying about the extremeness of my IC because surely no one could possibly have constant pain, retention, incontinence, ect, ect and still be pleasant and smile.

It’s a serious conundrum. I have gone to appointments with new doctors and tried my hardest to be… I don’t even know the word? I try to just be honest and straight forward but fight my friendly instinct. By the time I’m done the kindness practically bursts out of me and I have to immediately call a complaint line and give them several compliments to make for 10 minutes of kindness suppression. 

I swear I’m not any one special, I’m not this amazing person or anything… I don’t take any credit for it at all… I’m just nice. It’s just one of my traits... I have brown hair, hazel eyes and I’m nice. I’m sure it’s genetic… I’m come from a long line of painfully friendly people.

Now after all that’s said let me be clear about something… Just because I’m cheerful, kind, nice, or whatever you want to call it does NOT mean that I handle this whole miserable thing super well. 

I unintentionally fool people by this regularly. My friends and family are constantly saying things like “you’re so brave!” and  “how do you stay so positive?”. They’re wrong. I’m just cheerful which covers up fear and negativity. In fact I think my good mood is a comfort blanket to me, if people (including myself) are laughing and smiling then everything is fine.

Or maybe I’m not really that nice... Maybe I’m just always slightly high from pain meds.

Either way… My general good attitude can be very deceiving and makes people not take me very seriously.

I have dozens of stories to prove this point but something unusual happened yesterday... 

Lately I have been having a lot of pain and irritation around the site that my suprapubic catheter comes out of and finally on Sunday I couldn’t take it for another waking moment! So I called the doctor on call to find out if there is any ointment or anything I could put on the area but she started asking me questions and before I knew it she was telling me I needed to go directly to the emergency room because it could be “cellulitis” (an infection of the fleshy stuff (cellulite) between by bladder and skin). 

My dear husband, Zach had just gotten home from a weekend away with his buddies, it was a gorgeous day outside and my rambunctious 2 ½ year old, Titus, was finally down for a nap (after a week of missing naps because he lost his beloved goody (pacifier) so we decided to use it as the chance to wean him off of it...) so I really didn’t want to go. No one ever wants to go to the ER but I especially didn’t want to go yesterday… But we went even though I wasn't happy about it so believe it or not... I wasn't Mrs. Sunshine Rainbow. 

Four hours later I was being discharged and I was nothing but worse than when we got there. Not only was I not my usual cheerful and sweet self anymore... I was really angry. 

First we had to wait FOREVER just to get into a room, see a nurse and then some barrel of a doctor came in and pushed SO hard all around my site to see if any discharge would come out then they left me there in tears and angry for what seemed liked centuries without any pain meds then schlepped me off to a useless ct scan and then the doctor prescribed me a pain medication and an antibiotic (even though he had no proof of infection) both of which that I was allergic to. 

I had been teary off and on during this whole time at the hospital but for whatever reason as my husband pushed me in the wheelchair out of the hospital in worse shape than I was when I went in, I lost it. 

I couldn't stop crying and proclaiming that I was going to throat punch several particular people. I even tossed in a few cuss words… Which is the equivalent of a sailor using his manners, I never swear! I usually blush and cower when I hear the worst of them.

When I got home I went in through the front door (which is typically reserved for delivery men and special guests) so that I could go directly up the stairs without having to cheerfully speak to anyone. I was so focused on allowing myself to not be nice for once in my life that I got all tangled in my catheter tube and stepped on it while walking up the stairs.

(Let’s have a moment of silence for that devastation….)

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I fell onto the stair into a ball of agony. The steps were getting soaked with a mixture of tears and drool. I couldn’t speak. Sounds were coming out of me that only wild cats would understand. I don’t know how long I laid there, curled up against the pain, moaning and dripping but it seemed like forever. 

My husband hurried my son off so that he wouldn't have to witness his Mother’s transformation into a werewolf because as far as he knew that was surely the only thing that could explain my actions.

Fortunately my Mom saw what happened and sat there with me. I think she was talking to me or maybe she was praying but I have no idea what she was saying. I was in a pain induced trance. I think I could have passed out if I let myself. 

I think I can comfortably (irony) say it was the worst pain I have ever felt. 

Eventually I caught my breath and the noises stopped, all I wanted was to be in my bed. So bent over and holding my catheter and bag high I dragged myself, with my Mom’s help, up the stairs and to my bed. I didn’t care that my pants fell off along the way or about the amount of fluid coming out of my facial orifices.

I took dilaudid, cleaned up my oozing, bleeding catheter site and got in bed and just laid there for a minute. Or maybe it was an hour I can’t remember.

The pain eventually got tolerable, I was able to eat a bowl of cereal, take the rest of my meds, and watch some TV with my husband. 

I wasn’t nice yesterday or today really… I’m mad. I am done with doctors not paying attention to me and thinking I’m wrong when I try to tell them I know a little bit about my own body. I am done with people thinking I’m a whiner and lazy. I am done trying to stay positive so that everyone around me feels good about things. I am done being the one that has to make huge, life altering decisions. I am done waiting for the next thing, good or bad. I am done missing out on life because I’m in too much pain or at the hospital. I am done apologizing when I pester my doctor’s office when I don’t hear back from them hours or days after they promised I would.

In other words… No more Mrs. Nice Girl.

Alright fine... Dear readers, you know me so well. I couldn't make it through another paragraph trying to pretend I was going to suddenly be this no nonsense toughie... I’m still going to be nice. It can’t be helped! Plus I really think being angry and mean just made the whole mess ,that was yesterday, even worse. Just like the last time I tried to be “tough” and not my submissive “kind” self. About two months ago I called my doctor’s office 3 times in one day because they told me they would do something immediately and hours later they still hadn’t. Later that day my doctor herself told me I have to “calm down” and not “take things out” on her staff.

I don’t want to be rude, impatient, uncooperative, mean, or any other ghastly thing that I would never pull off. I want to be nice, friendly, kind, joking, and happy… Even when my body isn’t.

So I’ll continue to be nice and hope that the old saying “nice guys finish last” isn’t as accurate as it seems to be. I will call my doctor then be patient and hope that they do things when they say they will. I will hope that they won’t accidentally give me a drug I’m allergic to... Or even forget about me all together.

Humph… What a depressing blog this turned out to be. I’m so sorry I wasted your time! Let me buy you a coffee or a cupcake. 

See what I’m saying? Can't be helped... 

(P.S. I really think the problem is that I’m reacting to the actual latex catheter tube. I called to see if I could get my tube replaced sooner than 2 weeks from now.  I'm waiting to hear back. Also the scheduler called me to schedule the BIG surgery but my surgeon is booked all the way out to JULY for Pete’s sake. She told me she’d talk to the doctor and see if he could squeeze me in sooner but I haven’t heard back from her either. Surprisingly my gentle reminders have not produced a thing... Confusing, I’ll update as I can!)

My son, Titus being as patient to get his play dough as Mommy is to have surgery! 

New Beginnings

I have written 59 blogs over the last two years. Each one has been written with honesty, love, and total vulnerability. Each one has been completely different and with a unique desired result. 

Some I have spent extra time on to be sure it was well written and witty, with the hope that each person that might stumble upon my blog would enjoy every word. Some were written in the trenches of pain allowing the snappy snarks and the punctuation to falter. Some have even been written blindly as I type words onto a screen that is blurred from unshed tears in my eyes.

This one is different than any other. It might stir up controversy in the IC community, it might begin a barrage of concern from uninformed yet concerned loved ones, or maybe it will give hope to some who have struggled long and hard with a disease that was never meant to be “fatal”. 

Either way, I am here to be open and honest, as I try to be in every blog, knowing full well it may backfire.

In my last blog I told you I was going to see the surgeon about removing my bladder. I wanted to write a blog right when I got home from the appointment so all the facts and charming anecdotes were fresh in my memory but I was just so overwhelmed. 

I went into the appointment thinking the doctor was going to recommend doing the internal version of the surgery where they take the bladder out and make a new one out of spare parts that you don’t really need. I also thought it was going to be him giving me tons of information then I’d go home and pray about it and talk to my family then after we made the decision we could just call him and schedule it up.

So when that appointment went nothing like that, it led to a sense of overwhelming confusion.

The doctor was very nice and open to talking to us about all the options but made it very clear that IF he were to do this surgery he would prefer to do the external version. He also told us all the haunting risks of doing this major surgery but I didn’t hear that. My Mom, on the other hand, heard all that loud and clear. 

What I heard was when he said, “no matter what, this surgery will reduce your pain.” I’m sure he went on to say something about not being sure how much it would help but I was mesmerized with visions of me line dancing, chaperoning field trips and vacations with my husband jet skiing on sparkling blue waters.

He also gave me a list of things I had to do before he would consider moving forward with this major surgery and said to follow up in 6 weeks.

We all left in a trance but over time we formed a mostly factual memory of the appointment.

I ended up getting another (or perhaps the same) infection that took a new, bad turn that prompted me to call 9-1-1 for the first time in my life. (Actually I have called 9-1-1 other times but that was mainly to report hoodlums and delinquents never to ask for help for myself. Yes, I’m “that” lady.) My fever had spiked, I couldn’t keep anything down, I was vomiting bile that was a color green only found in the extended size Crayola crayon box, my urine was a color comparable to mountain dew and scariest of all… My chest was really hurting.

It was horrifying and I pray that I don’t have to do that again anytime soon (maybe far into the future when the greatest feature on the ambulance is the ability to hover not to fax… and maybe that time I’ll at least get some studly firemen) but the good news is they finally took me serious and gave me a big whopper IV dose of some heavy duty antibiotics. 

Then two days after that they removed my suprapubic catheter tube, with the theory that some bacteria on the tube kept re-infecting it’s new home (otherwise known as my bladder), and replaced it with a shiny new, sterile one!

So anyway all that hullaballoo distracted me from the bigger goal of checking off my homework list that the surgeon had given me. So once I was recouped from the tube change and infection I got busy scheduling appointments!

This last week I have finished my “to do” list… Most of the stuff was boring and useless but will surely make the surgeon feel good knowing that he was thorough in verifying we had exhausted all other options.

The best part was meeting with the “ostomy nurse”. When I made that appointment I didn’t even know what an ostomy was much less that there was a nurse specifically for that so it was definitely a much needed and very helpful appointment.

I am going to ATTEMPT to explain how the bladder removal and then ostomy system works but please bear with me as I am just learning as well and the height of my science education was dissecting a frog in my front yard. #homeschoolproblems

First they remove my bladder and urethra (while magically keeping my whole vaginal area intact) then they snip out a little piece of my small intestine and reattach it without it even missing the bit they borrowed.

Then they make an “ileal conduit” by hooking the still intact ureters (naturally our urinary tract goes kidneys, ureters, bladder, and urethra) up to this piece of my innards that then comes out of a new hole in my abdomen (usually about 3 inches to the right of the belly button). They pull the intestines out a few inches of my body then they fold it down like a fetching turtleneck making what’s called the “stoma”. So now the urine travels out from the kidneys, ureters, newly formed “ileal conduit”, and straight out of this little stoma!

After it heals there will be a little red knob sticking outside of the abdomen area that urine is constantly dripping out of. That’s the stoma and since it’s made from intestines it is wet and bright red just like you’d picture it… so that’s disgusting…

Now here’s where it gets tricky. There is no sphincter or valve in that area to control when the urine comes out so it just constantly drips out as quickly as the kidneys can make it. So they put this very odd bandage looking thing known as a “wafer” (who was paying attention to my stellar advertising?) around the stoma then a small yet sturdy bag attaches to that to catch the urine.

Then there’s the fact that I would have to have this bag attached to me 24/7 for the rest of my life. But quite honestly that didn’t bother me too much. It’s really small and pretty unnoticeable. I could wear it under a bathing suit if I got creative! As of now I already have a bag but I’m so miserable I can’t get dressed anyway. So this would be a smaller bag and hopefully no pain! Without the pain I would be able to spend some extra time bathing suit shopping!

We learned even more than that but hopefully that summary explains it with some simplistic clarity, I don’t want your head to nearly pop off from the spinning like mine almost did after my appointments.

Since the bags are such an important part of life after having this surgery done that would make the wafers very important as well! So the nurse had me put 3 different types on my stomach to see if I am allergic to any of them. Of course I was. There was one clear winner from the very beginning of the comparisons and it stayed consistent throughout the whole process. The worst part was removing two of them, it took me 4 hours to scrape and remove them from my extra sticky skin! 

Anyway, I have been documenting that with pictures so I could remember what things looked like at different stages so maybe seeing that will help understand! (No judgement of either my pudge or my delightful nighty covered in alarm clocks and coffee cups!)

This is all 3 of them, the one on the left is where the actual thing will go! 

This is the winner! It's thin, easy to remove, the bag attaches very easily, and it barely caused any reaction! 

This is the "wafer" that I liked with the bag attached just like it would be after surgery!  

Few decisions impact every day of the rest of your life after you make them. Few decisions are important enough to spend weeks praying, talking, consulting, arguing, crying, and testing before you finalize that decision.

In my life there have only been 3 others as important and life changing as the decision I have now. Marrying my husband, becoming a mother, and having a hysterectomy long before I was ready were decisions that were equally as important and just as impactful as the one I need to make now. The first two were joyful decisions full of hope and love first of all but I had to weigh the potential challenges as well. The hysterectomy was a sorrowful decision with a few dashes of good which is similar to the internal battle that’s been happening lately…

Since I made each of those decisions there has been good days that make me celebrate my awesome decision making skills and bad days where I wondered what impairment caused such a delusional answer. None the less I know they were the right things for me to do and the permanency of those decisions don’t scare me at all anymore!

So I guess that teaches me that no matter the exceptional outcomes of those huge decisions I might still falter from time to time and wonder if it really was the right thing to do but I have to go with my heart and trust God that he will lead me to the correct decision that will deliver the rest of my story! (Mrs. Bink, (that was my 3^rd grade teacher) was that a run on sentence?) The peace that has come after making these decisions could only be from God, confirming my meager human decision making skills.

Now my decision is… do I keep fighting this IC fight that I have fought hard and long or do I give up for the chance of peace? Do I get this dysfunctional organ removed from my body and trade the symptoms of a diseased bladder for those of being bladderless?

I thought this was an impossible decision. I really didn’t think I could ever make it but I have.

My decision…

Yes.

I will take that risk.

I could tell you the exhaustive decision making process I went through to come to this but all you need to know is that I have decided to go for it.

The scrolls of paper it would take to make a complete pros and cons list would deplete a whole forest but the biggest thing is:

PRO:
The chance to live a normal life.

What con could shadow that pro? None that I could find.

(Oh snap get the tissues, this is where I start ugly crying…)

The last morning that I woke up without pain I was wearing a bra size that was a vowel. The last time I went about the day without thinking about how much water I drank and therefore when and how often I would have to pee the latest drama was an under the desk hand holding scandal.

Since the age of 12 I have lived with pain and debilitating symptoms that created a life for 

me that was really different and hard. I have never had a “normal” since. I have different considerations with each thing I do in my life; I have worries and thoughts that people take advantage of not even thinking twice about.

The possibilities that could come with the potential success of this surgery are endless… Things that I have never even considered I could ever do.

At the end of that day that won me over. How could I not take this risk? How could I just keep living in this constant, degenerative hell when there is hope?

I’m not delusional or dumbly optimistic, I know that the risks and possible side effects are huge and ghastly but I really can’t imagine any of those being worse than the state of disrepair and pain that I’m in now. Plus, I would always wonder “what if?”

One of the biggest arguments I’ve faced opposing this surgery is my “youth”… It’s honestly the most baffling to me. Why would I NOT do this surgery while I’m young? Yeah… there might be some cure invented the week after I undergo this major, life changing surgery but what if there’s not? You think I should wait and waste that previously mentioned youth just waiting for some “maybe” cure? Or what about the fact that other than my horrible bladder I am otherwise very healthy, why wouldn’t we consider that in the “pro” column? I have the heart rate and blood pressure of a race horse! (I have no idea if race horses have good heart rates and blood pressures but it seems like they would…) Most of all, the reason that I sent this argument out the window… Why, oh why would I waste these precious nonrefundable years with my son, Titus, as a toddler being sick? Would you have me wait until he is graduated from high school to go have this surgery and attempt to be well?

My IC is not going to get better on its own. My bladder isn’t going to suddenly heal itself and become a big, healthy vessel to hold all the urine I ask it to. It’s going to continue to shrink, to misbehave by retaining when I tell it to empty and empty when I tell it to hold, the hunner's ulcers are going to continue to grow and stick themselves to my bladder wall, and my urethra is going to continue to bleed at the slightest pressure.

This surgery is inevitable for me so I am choosing to do it now. While I’m “so young” and while my precious son still has so many years of needing his Mom ahead of him.

My husband has encouraged me to start a “Well List” (similar to a bucket list but more magical and less… morbid…) and just writing some of these things down that I want to do when I am well has given me a sense of hope and a sight for the future that I haven’t had in years, maybe never had.

I was learning to water ski when this dreadful disease descended upon my body and my life. I got pretty good at two skis and was going to start practicing the slalom kind that coming summer… I never got the chance. My 13^th birthday present still has the price tag on it.

I declare right here, for the world to see… I am going to learn to ski on one when I’m better.

When this surgery is over, my incisions are healed, my body loosens up after years of tension from pain, I adjust to the pouches, wafers, and other supplies that will become just as much a part of my life as my wedding ring I am going to do things that I never could have done with interstitial cystitis.

I’m going to have adventures, go on vacation, make commitments, transform from a patient into a daughter and wife again, and most of all… I’m going to be my sons Mom.

I’m not going to miss another day with him or anyone else I love because I’m stuck in the shower, zonked on pain meds, or just hurting too bad.

I’m going to spend the rest of my life returning the favor to my family and friends who have helped me through the last 12 years of life with this debilitating disease, I’m going to reverse the roles and take care of those who have taken care of me.

I will remind myself each day to not take anything for granted. I won’t complain because I’m sitting in the rain and cold while I watch Titus play his 124^th baseball game because I could be home stuck in bed. I won’t get frustrated when I’m stuck in traffic on the way to go camping for memorial weekend because I could be unable to walk down the stairs. I won’t yell at my son because I just need a moment of quiet because I could be home alone surrounded by silence tied to the bed by a catheter. I won’t shiver when we swim in cold lakes because I could be sitting in the hot shower begging it to take away my pain. I won’t even complain about trying to find a cute dress that will disguise my bag because I could be home in a nighty I’ve worn for a week and is crusty from some pudding I ate days ago.

Or maybe I will do all of those things. Multiple times. But I will try to remind myself all that I have been given. I will try to get through the recovery of the surgery with humor, bravery, strength, positivity, and most of all… with faith knowing that each day takes me to this new life I have only dreamt of.

I know this is going to be a long, hard road ahead of me. I know I will probably regret it some days. I know that I am young and this is drastic.

But I also know that I have already missed way too much because of my disease ridden, misbehaving bladder and I refuse to let it take many more away.

This is probably not the most well written, eloquent blog I’ve ever posted. I could probably use more flowery metaphors and pull at your heart strings like a bell ringer on Easter Sunday but this is all that I have for you. My heart. It’s a confused, jumbled mess but it’s genuine and true.

I will continue to document this journey for others who have been labeled with “End Stage IC” but my dearest’s I can’t say that I am going to stay dedicated once my bladder is gone! Writing has always been my passion and I will continue to not because I want to but because I need to. Who knows… maybe I’ll write a book some day about my journey to get to where I hope to be in a year from today.

Next Wednesday I will meet with the surgeon and I will say, “Let’s do this thing!” They will have to check the schedules and verify with my insurance and then in a few weeks my phone will ring and they will tell me my surgery has been scheduled.

They will tell me a date that probably means nothing to me now that will forever on be the anniversary of the day my life changed.

I’ll update you then! Until then I continue to be in lots of pain and am just really sickly, I stay in bed most of the time and pray for sleep that rarely comes. I’ll take all of your prayers to get me through this final stage before surgery and then of course even more as I go through the operation and recover from my body getting rearranged!

Thanks for reading my ramblings and continuing to support and pray for me! Love you all!