The humble daisy

Today is my Mom's birthday! Happy Birthday Mom! I started out writing a card to go along with her gifts but I immediately realized unless I bought a small forest worth of cards I wouldn’t be able to get everything I wanted to say jammed on there so I wrote a letter and thought I would share it because that's what I do. (Hi, I'm Deni and I over share. I have not over-shared for... well I'm doing it right now... I'm not sure how effective the Over Share Anonymous meetings have been...) So here is what I wrote... 

Happy Birthday! The three of us love you so much, thank you for all that you do every single day! I can only pray that God will give me the love, patience, endurance, and selflessness to be the type of Mom to Titus that you have been to me since my first cry.

To quote a movie that we both love, you’ve Got Mail- “I love daisies, they’re so friendly. Don’t you think they’re the friendliest flower?” I really do agree with Miss Kathleen Kelly! They are so friendly and make people smile. Who can be sad around a daisy flower? Not even the dirt on the ground that they grow from can feel forlorn when it looks up and sees this happy flower blooming from its filthy self. Drew Barrymore once said, “Daisies are like sunshine to the ground.” I totally agree with that as well!

I don’t know why or when Daisies became “our” flower… I don’t just like daisies by myself, I like them with you. Maybe you liked them and, like most daughters who want to be just like their moms, I decided to love them as well. Then perhaps over time they did become my own very favorite flower.

Either way, any time I see them I can’t help but smile. They are happy and friendly but more than that they make me think of you! Whether they’re nestled in a gorgeous bouquet at a farmers market, perfectly placed in a glass vase in a centerpiece at my wedding, or growing as a weed alongside a busy road they make me happy. Not just happy like I feel when I’m eating a heaping bowl of ice cream but the kind of happiness I feel when I hear Titus giggles.

I decided to do a little research on this topic of daisies because you can’t love something so much without knowing it thoroughly and the results were astonishing.

I found out I don’t like daisies because they’re simple, friendly, pretty, or unassuming and definitely not because of their smell. I like them because they are you and you are them. I understand that this sounds like the ramblings of a crazy, artsy street urchin hobo but bear with me as I prove what I just discovered to be true.

Fact about Daisies #1

A daisy is a “vascular plant” which simply means that they circulate goodness throughout themselves to survive.

Fact about You #1

You have more goodness circulating in you than anyone I’ve ever known. However, you don’t use your goodness to survive… you use your goodness to help others survive.

Fact about Daisies #2

The name daisy comes from an Old English word that means “Days Eye” because they open at dawn.

Fact about You #2

For the past 28 years you have been waking up at dawn, or any other time day or night, to take care of your family. Whether it’s to soothe a crying baby, make a pizza, or take someone’s temperature… you wake up whenever anyone needs you.

Fact about Daisies #3

Daises represent purity and innocence.

Fact About you #3

No one could be described with those same two words like you could be, especially pure. You’re pure love, joy, selflessness, and devotion.

Fact about Daisies #4

A daisy is actually two flowers in one.

Fact about You #4

You are many people in one. You are a wife, a mother, a mother-in-law, a grandmother, a daughter, a sister, an aunt, a niece, a cousin, a friend, and so on... You are so much, to so many.

Fact about Daisy #5

Daisies have many medicinal qualities. They can help things like easing a cough and even slow bleeding.

Fact about You #5

This is the most surprising fact of all because years ago no one would have guessed it but now you’re just a framed paper hanging on the wall away from being a doctor. When we were young you healed our owies and boo boo’s with a kiss and now our ailments are more extreme. In order for you to take care of your family, you became much more extreme. The way you care for our family and treat our various injuries and complaints 24/7 is beyond anything found in nature.

Fact about Daisy #6

Due to their color and scent daises attract Bee’s more than any other flower.

Fact about You #6

You always smell delightfully sweet yet elegant and dress in beautifully bold yet simply soft hues but your colors and smells aren’t what attract people to you. People can feel your kindness and care from miles away and are immediately drawn to you. 

Fact about Daisies #7

The daisy family is the second largest family of flowering plants. Some daisies are big, some are small, and they come in various colors, not one looking like another yet are all beautiful.

Fact about You #7

You come from a large family that steadily grows as the years go by. There aren’t two family members the same. Each person is unique, significant and special in their own ways.

Fact about Daisies #8

Daisies thrive in typically inhospitable conditions that most flowers wouldn’t stand a chance to grow in, much less thrive.

Fact about You #8

You have not only survived difficult times of life but you have thrived! All the financial ups and downs, the sicknesses, the heart break, the changes, and the challenges have not broken you. Not only do you come out all that on top… You come out with a smile, a plate of fresh cookies, humming an old hymn (even if Zach thinks they’re slave songs…) and a heart full of faith that God is with you.

After typing these facts I have made a new discovery! You’re not a daisy, a daisy isn’t you. As much as we love those lovely, simple, happy, humble flowers… You are even more.

Although realizing that doesn’t change anything, I still love daisies. I will always love daisies because they remind me of you. Actually it would be more accurate to say they remind me of us.

I’m so very thankful that through the most inhospitable conditions we have been through together we thrive together by somehow using the hardships, the tough rocky soil, to get stronger and become even closer.

Happy Birthday, Mom. Thank you for using your adversity to make you better, for being selfless to make us better, for being friendly, happy, humble, hardworking, and giving just like a simple, elegant, beautiful daisy.

Love,

Your Daughter

Deni

On the day I was born! 

Mommy snuggles are the best!

We always had so much fun! 

Right in front of the White house, we traveled a lot growing up!

Visiting Mom at work, Aerofab Racing days! 

Mother of the bride! 

First time she met Titus!

"The best Mom's are promoted to Grandmas!"

At the Zoo!

Tractor ride for Titus!

Me and the 3 people I love most in the world!

My Mom and her girls all grown up! 

Even when you turn... eh... a certain age... Your Mom brings you cake and candles! Love these 3!

Now… As I have told you before… Even when I write things that have nothing to do with IC, although this one does because truly I could not have gotten through the last almost 15 years of having this disease without this woman who’s birthday is today, I still post them on my blog. It can’t be helped.

I printed this note and put it in a nice box, wrapped it, and gave it to my Mom along with a big bunch of daisies and a pretty gold daisy necklace. She read this sobbing her eyes out and then after she thanked me 134 times she said, “I hope I can live up to all this”. That in and of itself is another example of why my Mom and these humble yet beautifully elegant flowers are so alike.

I pray that each of you that comes across this blog that has IC has someone in their life even half as wonderful as my Mom!

All this started with me writing a card but then it turned into an 8 page report on the similarities of daisies and my Mom. Don’t ask me why. It just happens all the time... But this time I thought I would share it with all of you as a tribute to all the Moms out there for Mother's Day coming up on Sunday! 

With my Mom's birthday today and Mothers day on Sunday, this whole weekend will be a celebration of my Mom and all the other amazing mother that I look up to! 

So Happy Mother’s Day to the amazing women in my life that have, and continue to, make me who I am and who encourage, support, and love me through life, my illness, and motherhood. I love you: Grandma, Aunt Claudia, Aunt Ginna, Mother-in-law’s Charmaine and Ruth, my sisters Dana and Jeny, my amazing cousins- Karly, Katie, Jamie, Michelle, Emily, and Dorianne and so many other wonderful women!

As for the Mothers who have IC, you’re my greatest inspirations! Thank you for pushing through this horrid disease and still putting your children before yourself. You doing that pushes me to be the best Mom I can be even in the depth of end stage IC that tries to rob every good thing in our lives.

Most of all… Thank you to my sweet blonde haired, blue eyed miracle that made me a Mom 2 ½ years ago and continues to love me the way only a toddler boy can love his Mom. Thank you for your patience, your tolerance, your trust, your faith, your smile, your snuggles, and most of all… Thank you for your love. I promise I am doing everything in my power to be the best Mom I can be every single day, for each day and for the future. Thank you for calling me Momma!

Where it all began!

Snuggling with 2 week old Titus!

Pumpkin Patch 2011

So proud at Titus' baby dedication! 

At the beach visiting Jeny in California 2012

4th of July 2012 (Notice the daisy????)

Titus loves his Momma! His first birthday pictures! 

Titus' First Birthday!

At the Pumpkin Patch 2012

Visiting a BIG fire truck! 

Playing in the snow! 

Fun in the alligator pool!

At the 4th of July parade 2013 

Titus and Mommy on Titus' 2nd Birthday!

Playing with his new toys on Christmas 2013

Titus visited me at the hospital several times the last few months! 

Dyeing Easter Eggs

 Happy Mother’s Day to all the good, sacrificial, pure, innocent, care taking, all-in-one, sweet, strong, and enduring daisy Moms out there!

    

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….)

.

..

…

….

…..

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! 

Decisions, Decisions...

Stop taunting me blinky line. I’m going to start typing… I’m just thinking… Stop it! Well that’s a losing battle. Ok fine. I’ll start. 

It’s been a while since I’ve updated my blog but I have a valid excuse (I could get a doctor’s note if you need proof), I am not being too dramatic (maybe a little dramatic but not as much as usual) when I say that I have been fighting for my life the last two months. The last time I posted I had just had my suprapubic catheter put in and had a horrible case of food poisoning.

You probably would have thought it couldn’t get much worse than that, I know that’s what I thought. Well my dear reader, we were all wrong. I got the worst UTI I’ve ever had in my life two weeks after that. I think the problem was that I wasn’t voiding on my own so I wasn’t feeling the early signs of the infection. So by the time I knew I had this UTI there was no regular old oral antibiotic that was going to clear it up.

It was a Friday when my Mom took in my urine sample and I started the antibiotics. I had done an at home UTI test which was glaringly positive and my urine was thick, chunky and reeked. We all knew I had an infection and it was really bad. So even though we didn’t have the culture results my doctor called in some really strong antibiotics and I started taking them right away! Even with that by Saturday night I was having flank pain like I couldn’t believe. That, of course, meant that it had moved to my kidneys. My pain was a 10 on a scale of 1-10. (I hate it when people (including myself) say "on a scale of 1-10 my pain is 1000". That’s not on a scale of 1-10. So it’s an invalid answer.)

As the pain escalated so did other strange symptoms that quite frankly scared me more than carrying a loaf of bread through a bird sanctuary (if you know me, you know that means I was really scared). I had a fever, I was shivering and sweating, I was so weak and could barely keep my eyes open, I was brutally nauseous and felt sure I would vomit at any moment. It was Saturday night at 10pm so I called the doctor on call for my urologist’s office. The doctor who was on call was one that I had never met so he asked me to spell my last name. I started spelling, J-O-V… then my mind went totally blank. I can’t even explain it more than that… But I just shook my head as I started to cry. My Mom took the phone from me and finished the explanation of all my symptoms.

Right away the doctor said I needed to go in but then continued to ask more questions. After each answer he would confirm that I needed to go in. Then when my Mom told him all the hardcore antibiotics I had been taking for two days and my symptoms were getting progressively worse he told her to hang up the phone and take me directly to the hospital.

I live in a small rural town, (bear with me, this isn’t as random as it seems) the kind that you know you’re in when the scent of cow pies swirl its way into your car vents as you enter the city limits, and there is a small hospital with an “emergency room”. I use that term very loosely. There is never any wait to get into a room and be seen by nurses and a doctor. It’s nice and clean but really small and all the staff are suspiciously young. They are all super nice but something tells me they aren’t used to complex cases of anything. We are just 30 minutes from a skiing area of Mt. Rainier so they are prepared to triage for extreme cases and are used to taking care of basic broken limbs but anything complicated is tricky for them. Even though I know that they won’t understand the complexity of my problems, almost every time I need to go to an ER I end up there. The allure of the immediate care and the 3 minute drive is too tempting to resist. I think I have finally learned my lesson.

Anyway, they ended up admitting me and I spent 2 ½ days in a live episode of some sitcom featuring a small town hospital that has no idea what they’re doing. Again, they were mostly really nice. They just didn’t know what to do with a 26 year old girl that looked healthy, had “just” a UTI and kidney infection, claiming horrible level 10 pain, was asking for an excessive (in their mind) amount of narcotics and had a suprapubic catheter.

So Monday afternoon I asked them to discharge me and my husband picked me up and drove me to the hospital my urologist works out of 1 ½ hours away. She set up a direct admit so when I got there they had me sign a few papers then they whisked me off to my room. They got me settled and treated me with such kindness and respect and FINALLY treated my pain as it needed to be. That evening my doctor came and visited me after her regular day at her office and she set up a plan. She got me on a better antibiotic that the infection wasn’t resistant to and I wasn’t allergic to, set up wound care for my SP tube site that kept re-opening and tearing, set up a plan to sufficiently keep my pain down, got me on a regimen to relieve my extreme constipation and set up some specialists to come visit me too.

I went from a bad episode of Scrubs to an excellent episode of House.

A week later I was discharged, I left there better than I was before the raging UTI started. They set me up with a home medical company that showed up the next day with a delivery of equipment and the lidocaine medicine to do my own bladder instills 3 times a day like they were doing in the hospital. Also my doctor wrote me a realistic prescription for enough pain medicine to get me through to the next stage of my IC journey (which is what this whole blog was supposed to be about).

When my doctor came into my room the day she discharged me she sat down with a sigh. I think after getting reports, hearing from the nurses and other doctors, reading my chart, and seeing me in that setting made her really realize how bad my IC had become. Some time last year she deemed my IC, "End Stage" which just means there isn't anything else they can do for it. Since then my doctor and I have talked about the reality of literally cutting our losses and giving in to this disease. She had really wanted me to try cyclosporine, an immunosuppressant drug, but now that my bladder had stopped functioning all together that isn't an option anymore. The only hope for that drug would have been for the pain.

My bladder is the problem. No matter what we do, I still have horrible pain in my bladder and it does not function as it should. It never has. I’ve always had incontinence and retention but never to the degree that I have the last 2 years. It used to just leak or retain a bit but now my bladder just empties itself whenever and wherever it pleases and now I cannot depend on it to release any urine at all on my command.

So. My bladder isn’t functioning and the pain is off the charts. I’m taking more pain medication every day than a large elephant would like while giving birth. There is only one thing left to do. Take this diseased dysfunctional organ out.  

This morning my Mom, husband, and I are going to see a surgeon that specializes in bladder removal and diversion. I’ve tried to do as much research as I can and write down all the questions I can think of. I am as prepared for this appointment as I could be. There are a lot of ways of doing this and I don’t really understand all the options and differences but that’s why we are going to this specialist.

The one thing I do know... This isn’t a trial thing that I can just reverse if I don’t like it or it doesn’t work. This is final. This is huge. This is the biggest decision I will probably ever make.

No pressure.

I wish I had more to tell you about this but truly I don’t know much. Even smack dab in the middle of the Google Era I can’t find much information about it. All I know is there’s lots of ways of doing it and it’s going to be a pretty involved surgery no matter which one but that this doctor is the go to guy for these surgeries in the state. Also that he does surgeries robotically, I don’t know if that’s valid for me but it’s interesting. He is also a professor at UW. Oh and he likes tennis. And has brown hair.

So, please pray for us. That we find out more information. (Now that I know he likes tennis I’m probably going to make some lame joke about not getting tennis elbow before my surgery… great.) We really need more information. Also that we walk out of there informed not just totally confused by the mass amount of information we suddenly have that we didn’t have when we walked in. (Other than the brown hair.) Then that we can use the information Dr. McEnroe gives us and God’s direction to make the right decision.

If I have the surgery it will change my life no matter how it goes. I could potentially be well, pain free and even live a normal life like I haven’t since I was 12. (Not that I want the life I had at 12, it was fun but I’m really ready to live an adult life without pain… I don’t even know what that’s like! The last time I was pain-free hemp and string were considered the jewelry material of choice and a bare midriff with baggy jeans and doc martins was high fashion to me.) I suppose the surgery could probably go badly too… I don’t even know what the worst case scenario of this surgery would be? Worse pain? The same? Adding digestive issues to the list too? See, this is why we are going to the doctor tomorrow… and why we need prayers. See the number of question marks I’ve used in this blog?!?! Have I mentioned we need prayer?

I’ll update you all as soon as I make a decision. I know this is a controversial thing in the IC world so it’s important to know that I have End Stage IC and I have literally tried every single treatment (other than cyclosporine which I mention won’t work for me at this point), it’s been 14 grueling years of trying so many different things. Surgeries, oral medication, strict IC diet, suppositories, instills, interstims, naturopath options, physical therapy, massage, acupuncture, and probably even more that I can’t remember right now. I have been optimistic, pessimistic, encouraged and disappointed. I now have very low quality of life; I’m in bed 90% of the time. I have a catheter 24/7 that my family has to help me care for. I can’t parent my son at all. I can barely be a wife, daughter, sister, aunt, granddaughter, niece, or friend. The narcotics make my fuzzy and totally unlike myself but it’s better than what the pain does to me. It is time for drastic measures.

I will update you all as soon as I can, sorry for the excessive length of this blog I just have so much to say apparently. My fingers are tired and I keep accidentally knocking the scissor like clamp that’s keeping my instill inside my bladder. So I’m going to do a quick read through but most likely there will be grammatical and spelling errors that I would typically mock others for but I just don’t care right now. I hope you all still love me. Speaking of that, thank you all for your love, prayer and support for me and my family, whether I’ve known you my whole life or if we’ve only just met or if I don’t even know you, you are playing an essential role in my journey.

My appointment is at 9:30 tomorrow. So if you think of me any time before, during, or after that… A prayer for an answer, clarity and peace would be glorious.

I always like to add a recent picture to my blogs to show the happiness amongst the struggle. This one shows that though my heart breaks when I think about the fact that I’m not raising my son right now, he is so lucky to be spending time with so many wonderful people in our family in my absence. Whether you know them or not you can’t help but smile at this picture but since these two are amongst the most loved people in my life I can hardly stand how much I adore it. It makes me a speck less sad that I didn’t know he can now eat raw carrots without needing the Heimlich maneuver. Over and out!