The Avenger

Picture brought to you by the artistic marvel that is my Uncle, Jay Ward!

(Pretend this is being read in a deep, trembling voice like the announcer at the movies) In a world… where a villain runs rampant through unsuspecting bodies, where no bladder is safe, and where danger lurks behind every bathroom door. There is only one hope. Dooo da dooooo! Your inner brave, bold and bodacious heroine! 

That’s right! My inner hero took over and carried that IC from its creepy shirt front to the edge of sky and space then said in my most menacing voice… “You’ve won many a battle but this one is mine… punk.” (Feel free to imagine a proclamation even more hardcore… I’m not great at aggressive threats…)

My constant adversary is interstitial cystitis… the disease that fights me from the inside out. Most days this hard-hitting foe knocks me down cold before I even brush my teeth but this weekend I’d had enough! I put on my cape and spandex, as any heroine would rightly do, and I took on this opponent with my dukes up.

In most hero movies there are three steps beginning at the very first epic tune played to the proud credits rolling on the screen at the end. The first step is the hero getting assigned a mission that only he can accomplish, then he usually fails his first attempt at the task, and of course lastly he ends with a triumphant victory. Along the way there is also an “exciting” mix of hand to hand combat, people running aimlessly, constant random sounds of explosions, grown men traipsing around in what appears to be children’s Halloween costumes, and surprisingly very little actual dialogue.

This weekend was my very own action packed movie… perhaps with less fire and men in spandex but just as much inner turmoil and even a few dramatic gasp.

I had a challenging week with an IC flare that knocked me flat on my back but on Friday morning I woke up with a call from my inner heroine to take on the IC beast not only for me… but for the universe! Well... not really. But I thought it would be good for us to get out and spend some time with family.

So before my inner wuss could talk me out of it I quickly gathered up Titus and our stuff and headed out to my Grandparents cabin! The drive there couldn’t have gone any better with beautiful weather, a sleeping baby, and great music the whole way.

But once we got there it was a different story… stress of a messed up routine, new surroundings, new sounds, and a new bed were a hard adjustment. Titus thought so too… Ha!

We made it through the first night but the next morning I woke up in heaps of pain. I had done more in the last 24 hours than I had in weeks combined… I did laundry, packed, loaded the car, drove almost 2 hours, wrangled an exhausted and stubborn baby, slept in the same bed with that baby (turns out pack and plays aren’t his thing), and all that time I didn’t shower and tried to urinate as seldom as possible.

The pain was severe but I tried my best to ignore it, which in almost any other scenario would be impossible but some how the essence of my Grandparents cabin and every thing that goes with it made that a bit easier. We ate my Grandpa’s hotcakes for breakfast which I wish I didn’t have to describe to you. I seriously wish I could mail you each a perfect, cloud-like hot cake covered in your choice of homemade raspberry jam, authentic maple syrup, or classic Mrs. Butterworth.  

I was there with my treasured family (one of whom is having a baby as I type this, congrats McGrath family!) The weather was gorgeous and we sat outside while the big kids swam in the freezing lake and the babies played nicely on a blanket. It was the perfect scene… minus the searing pains I was trying to ignore and the overly exhausted baby I was trying to entertain.

Finally I decided to try to get Titus to nap yet again but when all I accomplished was more crying for Titus and the start of tears for me I knew we had pushed our limits. So we packed up and headed home. Except… it was memorial weekend which meant traffic. So half way home my pain took over my body, the stop and go traffic woke up Titus and he was NOT happy… I called my beloved siblings-in-law who met us and drove Titus and me the rest of the way so I could take medicine to ease the pain a bit and I could get out of the aching driving stance.  

When I got home I was pretty drugged up and disappointed with the way the holiday weekend was shaping up but I knew we had two more days and I just had to make it special for me and my boys! (This was the point of the action packed movie where I, the sweat wearing not spandex wearing heroine, knew I had to persevere to end with a victory!)

The next morning I woke up, gritted my teeth and set about to make the day perfect in spite of every thing. I was determined and no shady enemy was going to stop me. 

We planned an IC friendly picnic at the park with our favorite 2-in-1 couple, our friends/ siblings… and we had a wonderful time! Great food, pretty spring flowers decorated the park just for us, and a lazy walk on a short trail past a crick. Or was it a creek? Or a stream? Perhaps a brook?

Then later that night we tucked Titus into bed, grabbed our sweats and snuggly blankets and went to the drive-in movies!! I know, how 1950’s of us, right? We borrowed my mom’s SUV and loaded it with several geese hard work worth of pillows and blankets. We obliged to tradition stopped at the store and loaded up on way too much candy and got to the theater just in time to make our nest before our movie started. I had tears and side aches from laughing so hard as we feared… mostly jokingly and a tad seriously… the threatened car searchers and candy sniffing dogs finding our contraband of smuggled in snacks.

The night was so fun but I must admit I’m not a real action movie girl… So of course The Avengers was maybe not my favorite movie. I needed more flirty love stories and more...what’s the word? Oh yeah… WORDS! So much fighting and confusing references… I was lost. But don’t worry I started this blog on my iphone while Captain hottie pants… I mean America… battled some dude with antlers and a glow-in-the-dark silly putty stick.

I realized then that’s what I’d had to do! Avenge my IC! It was my enemy who had won too many times and especially the week before and I did it… I totally took on my trifling adversary and came out victorious!

You may be thinking… did you accidentally delete a paragraph or some thing? I don’t get it… where’s the victory?

My victory… dear friend… is just a simple relaxed good day. My IC may have won the battle on Saturday at the Cabin but Sunday I was the victor. I didn’t get much out of that movie except Mark Ruffalo should definitely stick to the rom-coms like 13 Going On 30 but I did have a possibly too expected realization that together we can win any battle… wait… I don’t think that really applies.

Anyway… I avenged myself that day. I don’t know what will happen tomorrow or the next day or any day after that but I know that this weekend I had a few hours of fun. Yes, I had to take medicine to make it through the movie, sure I had to walk to the bathroom weaving between parked cars like that scene in Grease, and okay I ended up stuck in the shower until 3:00 AM, but I laughed, I smiled, I made memories.

Deni- 1, IC-… well the stats don’t matter.

Fire! Fire! Fire!

The definition of Flare Up is… “Erupt or intensify suddenly; ignite quickly and suddenly especially after having died down.” Sounds perfectly accurate to me…

Tuesday morning I woke up with what I described to my husband through text as, “straight up, old school IC pain”. In my vernacular that means deep, stabbing, throbbing pain in my bladder that travels all the way down and out my urethra wrecking havoc along the way. The day was torturous… full of staggering pain, nausea, vomiting, moments of being high as a kite, moments of wishing I was, in and out of the shower, drug induced naps, stubborn wakefulness and a sinking depression. It was all too much… I was in a horrible mood. You don’t have to trust me, ask my husband… he’ll tell you. I’m pretty sure I yelled at him for spilling sour cream and for repeating what I said to my mom when she apparently couldn’t hear me. I guess I did kind of have an excuse but turning on my slaves… I mean eh my support system… is not the right route.

Yesterday was even worse than the day before… my pain hit a 10 on a scale of 1-10 multiple times and left me speechless (shocking, I know) and desperate. Finally I gave in and had my Mom and Titus take me to the emergency room.

There I laid in the vinyl hospital bed, covered with stiff sheets and a less than proclaimed warm blanket, tied into two fetching gowns (one on backwards to use as a “robe”), with my feet covered in scratchy, non-skid socks. My Mom and my achingly tired baby sat in the visitors chair trying to make the situation seem less bleak in any way possible. But not even Titus’ nose wrinkle or deliriously tired giggle could distract me from the pain.

The Doctor determined it was an “exasperation of interstitial cystitis”, gave me dilaudid to bring the pain to a more manageable level, ant nausea meds, and sent me on my way with tips to follow up with my doctors. Overall, I was pleased with the nurses and doctors attitude, I was worried they would wonder if I was trying to sneak a drug fix or that I was some kind of sissy but they treated my pain and me with respect, even after I lost control of my bladder for the nurse to clean up…

This is just one flare out of thousands… my IC is a constant numbers game, using the 1-10 pain scale. If it’s less than a 4 that’s a great day! 4-6 is not great, I would definitely prefer to be at home in the safety of the shower if I could, but if we had plans I would keep them and try to ignore the pain. If the pain is a 6-8 that’s a bad day, I would cancel any plans, take pain medicine, and spend the day in and out of the shower. When stuff gets serious and my pain is over an 8, that’s bad news bears. Usually throughout the average day I’ll have moments of level 10 but during my flares the pain stays between an 8 and10 all day.  

So here I sit… in my shower, pumping before I start my pain medicine regimen for the day, typing this in the very midst of a bad flare, and drinking a shockingly nasty glass of baking soda water to reduce the acidity in my bladder. I am frustrated on so many levels… I hate the pain, I hate the dependence of others, I hate that yesterday Titus had two formula bottles because my milk was poisoned with narcotics, I hate that this weekend is memorial weekend and it looks like all my plans will be canceled, I hate that my flare causes every one more work and less fun and I kind of hate this blog post. It’s not me… my words are drenched in pain and drugs, they are missing my corny jokes and almost too visual analogies.

So… to end on a lighter note… a joke brought to you by The Ellen Degeneres Show… What did the grape say when it got sat on? Nothing, it just let out a little wine! Ha! Totally makes up for all the whining, right? 

Public Restrooms... whats so restful anyway?

After my most recent excruciatingly serious blogs I felt like I should enlighten my faithful readers with a little of what goes on in my brain…. My sister claims it’s a scary place!

People without IC take for granted things like going to the bathroom in public and probably hardly notice the difference. I, however, am like a food critic but for bathroom. (Which by the way, that would be an amazing job… the food version… not the bathroom kind. Though I think I would love any job with a clip board and a check list!)

Anyway… going out in public is an adventure for me, no matter if it’s to the local fro-yo place or venturing miles away to an exciting destination such as… the mall maybe? The preparation for my voyage outside “the compound” is quite involved and requires hours of planning, including but not limited to restricting my…

Sorry, where was I? I was trying to eat my dinner in the shower and type this but that definitely was not working, I’m back now!

Restricting my water intake because as my famous saying goes, “the less I drink, the less I tink”. The best case scenario would be that I could go to the bathroom, shower and get out right before I leave then have a joyous time and not have to go until I’m home and can get directly back into the shower. But there are of course other scenarios… most of which I end up in a public bathroom.

I have a love/ hate relationship with bathrooms… they are necessary for obvious reasons but whenever I am in one I am in pain so I can’t help but be a bit prejudice of bathrooms… I generally restrain from hate crimes against them but you can’t win ‘em all!

If my plan does go haywire and I end up in a public torture chamber I definitely have preferences and restrictions. If I must go into one ideally it would be a lovely, impeccably clean single bathroom with a toilet and sink all to myself, it wouldn’t hurt to throw in some décor, perhaps a nice live plant and heck why not a cozy chair? If the pain is excruciating I have been known to stay in there a while, I just sit on the toilet and hope more drips of the devilicious liquid exits and gives me relief. Also in severe cases I have actually soaked paper towels in hot water and apply them to attempt to baffle my stubborn body into remission but have yet to succeed with that innovation. I have been tempted to climb into the sink and run that delicious water over my aching bits but have thus far restrained myself.

The next best are the bathrooms at Nordstrom’s! They do have the stalls which aren’t fun but they are plentiful and spacious and they even have a couch in the waiting area! For IC reasons it’s helpful in that I could rest there for a few minutes until the worst of the post-pee pain was over. Also for breastfeeding reasons it’s so thoughtful of them to provide a comfy place for me to feed my sweet baby!

If I were making a list… when am I not? I would put 3^rd on my list just your regular run of the mill stall bathrooms… I hate them for many reasons. A. I don’t like when people are waiting to use my stall while I push out a few piddles out at a time. B. I don’t like other people hearing me pee. It sounds like some naughty kid is playing with the hose turning it off and on. Some times it comes out with the force of my dad’s new pressure washer that apparently can break through brick… while other times it comes out as a slow leak. C. It’s just not humane to make another person sit next to other people while they evacuate their system… even if there is a flimsy plastic door between them, it’s just not right. D. I don’t like people seeing my feet while I go potty as they are usually clenched up or clopping around through the pain.

To go along with my previous bathroom destination, I hate the bathroom at the movie theaters. The reasons are the same but I loathe when the movie is over and every diet coke guzzling teenage girl has to go at the exact same time. I don’t think missing 5 minutes to relieve yourself in the middle of a movie is going to be too devastating, so why wait?

Side note… I prefer paper towels to those air-hand-drying mechanisms that confuse me and almost always startle me with the sudden hurricane that efficiently dries my hands. But I must admit that has nothing to do with my IC… just a person preference! Oops I’m letting my not-very-eco-friendliness show…

Next worst would be gas station bathrooms… though they do often meet the criteria of my first preference of a single bathroom; the stench, filth, disorder, and unisex factor really bother me. I don’t want to go through my agony, much less sit on a toilet, right next to a… urinal. Ew. Not to mention they are frequently on the outside of the building which makes them cold, smellier, AND who knows what people are doing out there… yikes.

But really I would take all of those any day over the complete disgust I have for the honey bucket situation… WHO THOUGHT OF THAT??? I mean seriously? Who is the person that thought, gee I know! People can go potty outside but in this cute little private area and they can go right into a huge vat and once it gets too full we’ll empty it!?!?! FOR REALS people??!! It’s wrong. I would literally rather find a nice stream and have a squat while the salmon swim by suspiciously than go into one of those excuses for a bathroom. I am getting all hyped up just typing this… nasty. In dire cases I have forced myself to endure the hardship of the porta-potty but have regretted it instantly every time. First of all talk about having to rush, not for fear of disrupting a kindly older lady’s shopping trip but for fear of passing out because you’ve been holding your breath for too long. Plus I dare not touch my precious derriere to the excuse of a seat so I brace myself and hover above the hole and hope that my poisonous urine goes into the desired direction (which doesn’t always happen by the way).

So as you can tell I do not like having to pee any where, any time but can hardly stand it in public! Often times I hold it as long as I can and wind up having an accident in the car on the way home or frequently in the drive way or even while running up the stairs to my perfectly IC friendly bathroom! I bet after reading this you’ll think twice before inviting me out won’t ya?    

The Fraud

Happy late Mothers Day to all my favorites Mommies out there, you mommies who I adore and look up to personally and to you daily ah-inspiring IC mamas.

My husband and 8 month old son really spoiled me for my very first Mothers Day. They got me a fancy video camera and a Tiffany and Co charm for my necklace that Zach got me when he proposed; it is a little padlock with a T for Titus inside. I felt very blessed and all that day we lazed about and ate yummy food. I got into bed feeling completely content and pleased with the day celebrating my first year of being a Mommy as well as my own Mom.

Then lying in bed that night I started thinking… that’s what always gets me into trouble… and the evil magic seed of doubt and guilt was planted in my head and grew at an alarming rate. Now here I am 3 days later convinced that I not only did not deserve any thing for Mothers Day but that I am a complete fraud and the FBI should be called.

Yes, Zach and I conceived Titus. Yes, I carried him in my womb for 9 months while struggling with IC and hyperemesis gravidarum (which is severe and persistent nausea and vomiting). Yes, I was sawed in half to bring him into the world. Yes, he has drunk milk I produced since day one. Yes, he slept in a bassinet in our room for the first 3 months of his life. Yes, I have made homemade solid food since he could eat it. Yes, I have done all that and much more but still I can’t help feeling like a lovable aunt rather than his Mommy.

I guess it all started when I had to have my first surgery post-baby when he was 2 months old… I started to rely on my Mom when I was unable to do so many things that I needed to do. At that age he was so sweet! He ate well and was happy to lie in my arms while I rested and watched unhealthy amounts of reality TV.

Then I recovered from that and my endometriosis started acting up which ticks my IC off… so more shower time for me, and more Grandma time for Titus. I would sit in the shower and hear him out there living his little baby life crying or chattering away. Some times I closed the door or covered my ears so it wouldn’t hurt so bad to hear all that I was missing.

While dealing with that I got shingles which could have caused him to get chicken pox with no trouble, so I had to stay covered head to toe and try to hold him as little as possible except to nurse him… which was an interesting plight while trying to expose as little skin as possible.

Oh and don’t let me forget throughout that time I had two bouts of mastitis, constant nausea, occasional vomiting, a serious rash from dehydration, and I was diagnosed with post partum depression.

Before I knew it I was back in the operating room for another surgery with strict instructions to not lift Titus for at least 6 weeks post-op. That was 5 ½ weeks ago… Tears are welling up in my eyes as I tell you about the last 5 ½ weeks…

The first two weeks I pumped Titus’ milk and my Mom or Zach fed him, changed him, put him to sleep, got him up, played with him, they did every thing. They would come by for visits but I was timing my pumping and my narcotics doses so I was either in extreme pain waiting to pump so I could take meds or not very coherent from all the medicine.

Finally I felt like I was up to nursing him… so I got comfortable in my bed, positioned the boppy, and the Mom/ Zach team put Titus right up to his “milk bar”, at first he latched on but quickly unlatched and cried on and off for the whole feeding. My back was hurting so bad I could barely breathe, my nipple was raw because I lost the protective calluses from not nursing, and worst of all I was more discouraged than I knew I could be.

I was tempted to switch Titus to formula but my heart hurt every time I thought of it. Some times those 15 minutes every 4 hours were all I got with him, even if they were spent in pure agony… I got to hold my suckling satisfied baby, pet his downy hair that was growing in unruly fuzzy patterns, kiss his pudgy fingers, stroke his roly-poly limbs that seemed grown over night, and know that I was feeding my child with the body that betrayed me every single day.

So I forged on. The surgery pain got better… I could do more and most days narcotics-free but due to my strict rules I still couldn’t lift or carry my baby. So I found myself not even making an effort to wake up when he was up or spend time with him because I felt discouraged by how little I could do. Before I knew it every time I would try to hold him he would just cry… My Mom convinced me it was because he related me with eating and was just disappointed to not be getting a treat. But really is that any better? That the only time I held my child was to feed him so that was my only value to him?!?

My mom and Zach would try to make me feel included, talking about his schedule and wondering if it was time for a nap but I couldn’t even talk about it because I didn’t know. I knew what time he ate but that was it… they were in charge of the rest. I didn’t even know how they put him to sleep any more. Did they sing the same songs I used to? Did the read the books the way I did? Or would he just snuggle up with his blankie and bunny and go right to sleep like I always wished I could teach him to. Some times I would watch him on the video monitor and feel physical pain in my heart. I missed him and wanted to be his mommy again…

During the night was the worst, he usually slept through the night but if he ever woke up there was nothing I could do. I took pain medicine most nights to relieve the agony that a day full of tension caused so I worried I wouldn’t hear him… and even if I did I couldn’t get him out of the crib anyway. So my mom took the monitor and rocked him if he woke up with his painful new teeth breaking through his gums. When he woke up in the morning she brought him into my bed and I nursed him then when he finished she took him away to start the day with my baby and I went back to sleep. I reminded myself my body is going through a lot and I need rest but… I still wonder if I am a fraud.

Days turned into weeks and now here we are… it’s almost 6 weeks and my back is still sore from surgery and I am having more incontinence issues than ever before. I have barely left the house for fear of wetting my pants in pubic. Worst of all, I still can’t lift or carry Titus! We are both relying 100% on my Mom and Zach. It’s exhausting for all of us and I’m sure they are just as anxious for me to be back to “normal” as soon as possible. Really though, what is normal for me? I will never be able to devote my life 100% to him he will never be able to depend on me 100%...

I know on paper I am a mother and I work very hard for Titus every day, even if that just means taking care of me. I am not the typical stay at home mom but I do what I can. I am Titus’ Mom and the only one he has so I have to buck up and “grow a pair” as my extremely classy husband would say. I guess I can’t berate myself for not being able to do the things that I am not able… just like no one would criticize a “normal” working mom for putting their kids in daycare.

I am so thankful for my Mom who supports me physically when I can’t be the Mom I want to be. Also for supporting me emotionally as she sits on her metal folding chair next to the shower soothing my mind when I feel completely inadequate and depressed by my seemingly impossible situation. She is the perfect Grandma for Titus and the perfect Mom for me…

I am so thankful for my husband… who has been through so much with me through the last 5 years and is still by my side every day… even after I pee my pants at the dinner table two nights in a row… oops. He writes me notes almost daily reassuring me that I am the perfect mom for Titus, maybe some day I’ll believe him… 

My IC Paradise

Today is a different kind of day for us in Washington state… it’s May and 80 degrees! There isn’t a cloud in the sky and the sun is blazing away. The only damper is that my ic is raging like a fire in the lowest level of hell. (not to be dramatic…) So normally I would miss the whole day trapped in the shower or drugged up lying on the couch catching up on episodes of Modern Family, but my parents built me a paradise… Well to be fair it wasn’t built for me but some of the details are especially IC- Friendly.

Every one has their perfect place, a place they see when they close their eyes to escape a scary reality, where they dream of, where they want to show all their friends because its that amazing they can’t keep it to themselves!

Well… my paradise is in my back yard… the most beautiful glistening swimming pool and hot tub you ever did see. The water is all salt water and not tainted by chlorine that would hurt my sensitive IC bits. There are a couple benches placed strategically so you can submerge in the perfect 90 degree water but relax on the perch. The hot tub has jets that swirl the 99 degree water in a soothing pattern that would release the most stubborn tension.

To make the pool even more perfect it is housed in a 3000 sq foot glass enclosure to be sure that we can use it any time in spite of Washington’s persnickety weather. The best feature is that the giant roof opens up and reveals the rare but beautiful blue sky and blazing sunshine on sunny days but buttons up tight on gray, rainy days.

So today I think I will strap on my comfy one piece speedo rather than my voluptuous Victoria Secret swimsuit and head out to the pool. I may do some floating, or perch on the bench, or maybe when I’ve had enough of the water I’ll lay on the sumptuous couch that is just steps away from the pool and bake like a starfish.

Days like today I remember how very blessed I am. 

Surgery punch card... Next one’s free!

When I was 13 I felt a new and scary pain that my young, unsophisticated, and N*Sync obsessed brain couldn’t process. I just kept saying to my Mom and the doctors that my “stomach” hurt. Of course they did lots of tests and sent me to a gastroenterologist who decided to do a colonoscopy and endoscopy… which is where they send a camera on a voyage to my tummy through, um, both passage ways. They did the procedure at Mary Bridge Children’s Hospital so they let me have my Mom in the procedure room until I was asleep. Then in some morbid way of making me feel in control they let me inject the anesthetic into my IV. I looked at my mom and said “oh, it feels…” then I literally passed out. My Mom starting crying in her minimalist hysterical way and the staff assured her every thing was fine and she went on her merry way. Who knew that was just the beginning of being put to sleep like a friendly yet aged golden retriever.

The next stop was a gynecologist who decided that I must have severe endometriosis. So they decided to do a laparoscopy where they make 3 little incisions- 2 on the bikini line and one in my belly button, then they go in and check out my girly innards. Turns out the kindly, intelligent doctor was correct, I had severe endometriosis. Once again I will use my non-medical and always quirky Deni’s Medical dictionary to define. Endometriosis is a disease in which pesky, uninvited cells attach themselves to the ovaries walls and flourish, wrecking havoc in their wake. (This is strange because I tend to kill any plant I come in contact with but call me Farmer Deni when it comes to growing painful rebellious cells!)

Around this time I started noticing pain with urination and they schlepped me off to an urologist who also needed to put me under for diagnosing purposes. So he performed a cystoscopy to check out my bladder up close and personal. This one they went up my urethra with a camera… fortunately I was asleep for that one as well…

Turns out… that Dr. was a chump so we moved on to greener pastures and after shuffling around we finally found my beloved Dr. Karny Jacoby based in North Seattle. She never doubted a word I said and agreed with the chumpiness of the last urologist so she decided to do another cystoscopy… this time she knew what she was looking for and diagnosed me on the spot with interstitial cystitis.

So from this point on we had our mission… Treat Deni’s IC… we just didn’t know how. After trying every non-invasive and relatively easy treatment Dr. Jacoby decided to bring out the big guns and implant an interstim device, which is a little pacemaker looking thing that is implanted in my lower back with wires that stimulate my sacral nerves to help with incontinence, frequency and urgency.

That step was a huge one that involved lots of little steps… first they installed a temporary trial one that had a wire coming out of my side and attached to a little external machine for a couple weeks. Then when I decided I could live with it they went in and placed it in permanently along with a matchbox sized battery pack. Each surgery they put me to sleep for the slicing and dicing then wake me up so I can tell them where I feel the stimulation. Usually they give me great drugs that make me forget it all but unfortunately a couple times it hasn’t worked and I have been scarred emotionally by what goes on in that OR when they think you’re asleep…

At first I thought the interstim may very well be the ticket! It seemed to help a ton but those tiny wires (or leads as they’re called) are placed so perfectly that my clumsy self tends to yank them out of place frequently. So after that I had 4 revisions surgeries to put the little leads back in their exact, perfect spot.

Then in 2008 I started having all sorts of extra pain and went to my gynecologist again. (I was starting to get very familiar with the common species of fish in waiting room aquariums by this point.)  He decided to perform another laparoscopy to check out my ovaries and laser off any more flourished growth that might have crept its way back. This was the surgery that he diagnoses me with level 4 (out of 5) endometriosis. I’m just saying… if this was the Olympic, I wouldn’t be complaining about that score! USA, USA, USA!

The year after that I decided to go for a nice innertube ride behind the boat and knew instantly after hitting a wave I was in for another surgery. This time when we went to break the bad news to Dr. Jacoby she brought up the idea of going “bilateral” or in other words… getting a second interstims. So we did another revision on my first one and she added the temporary tail while she was in there. Then just like clock work, two weeks later I was back in to get the permanent one installed.

I managed to keep them in check for 6 months until I was sent back to my friends at the OR for a revision on my new interstim. Then just a few months after that… I was back in for a double revision… which was NOT an enjoyable experience having both sides operated on. I was forced to lay flat on my face for a week until I could manage to lie on my side for a few minutes.

Just a few months after that surgery I found I was pregnant! So my next surgery was a scheduled c-section because of all the perfectly tuned wiring running through my body they didn’t think I should attempt labor. Then 2 months after I had my angel baby I was back in my home away from home to reposition the interstims after my fat pregnant body and kicking fetus destroyed their placements.

Just when you think you couldn’t take another surgery (tell me about it) there is one more… Do to losing a bunch of weight after having Titus and possibly doing too much too soon after the last surgery my faithful Dr. was slicing me open and fixing me up once again!

Sheesh… so that’s it! My list of surgeries… More are inevitable and my Dr told me that they even have new technology coming out that would only require one battery so less incisions and therefore shorter recovery, that’d be nice!

Also coming up is the dreaded hysterectomy that has been leering since the day of my endometriosis diagnosis 12 years ago…   I hope to pop out another baby before that day but either way I know that my body will have more scars from incisions and stubborn IV’s. I will probably have more foreign objects tossed in my body like that junk drawer that you find your missing marbles in.

Surgery is always hard on me… the anticipation, the surgeries when I’m forced awake to guide, every recovery, the narcotics after surgery and the process of getting off those narcotics… and then as of the last 2 surgeries… the not being able to pick up my sweet baby boy or take care of him or nurse him.

Every surgery I go in thinking “this is the one!” thanks to all the support and motivation from my loved ones… and I go out thinking “this better be the one, I’m never doing this again. If this isn’t it, heads are going to roll!” I know if I stopped being positive I would break down… so I know these surgeries are worth it and its all part of the IC game!  

Welcome to our home… um our half anyway…

I can picture it like it was yesterday and not 3 ½ years ago… lying in our bed, in OUR adorable townhouse that we (newly named Mr. and Mrs. Zach and Deni Jovanovich) were renting. It was my first night in our new place and I was so excited! We snuggled up and chatted about how great the wedding and honeymoon had been but how ecstatic we were to start living our independent, grown up life. I had a lovely nights sleep and then the reality alarm went off in the morning. I woke up and as any normal human would… I had to tinkle.

The second I sat on the toilet I knew there was trouble… the pain was raging. So I hopped into the shower, relief flooded my body and mind.  That lasted about 10 minutes until I realized I was chilly and turned the heat up… then again a few minutes later… and a few after that… until finally the knob was turned as far left as it could go, I was shivering and in more pain from the stress and cold than before.  So I reluctantly got out of the shower and back into bed…

It went like that for 3 months… Obviously some days were better than others but on tough days I would wake up, walk directly outside to my car and drive to my parents’ house to go potty and shower. (Most of the time I didn’t make it and would have an accident on route) Some times I wasn’t even up to driving and would have to have some one pick me up and drive me. Then I would stay there for a few hours in the shower and try to get home before Zach got home from work. Such a normal, wifely life I was leading. Our little house was always mess, laundry was every where, we never had groceries, and we lived on top ramen and popcorn.

We were also struggling financially with me not being able to work so we didn’t want to waste money on heat… we made fires to keep us warm and when we ran out of wood we burnt all the boxes and packaging from our wedding gifts. (We never admitted to the neighbors it was us who caused the soot all over the nations… oops.)

Then the final nail in the coffin, the straw that broke the camels back, the um… well I don’t know but you get what I’m saying! Zach lost his job and after lots of prayer and pondering he decided to go back to school and get a part time job. I was very proud and in full support of him! We both knew that, athough this was an exciting time in our lives, we would no longer be able to live in our precious townhouse that we had made our own.

My parents had just bought a 2^nd house in Arizona and were living there for 2 months then here for 2 months so they offered us the opportunity to live with them for free while we got “back on our feet”. I don’t think they knew what they were getting themselves into… We took over my old bedroom, made it a newlywed suite and turned the “bonus room” with the big screen and pool table into our family room.

Later that year, my Dad’s arthritis took a bad turn and forced him permanently in a wheel chair so they sold their Arizona house and moved back to Ravensdale for good. So there we were… one big happy family. Zach went to school all day then delivered pizzas at night, my parents ran their company out of the house and moved their bedroom downstairs so my dad could sleep in their bed, I spent most hours in the shower… oh yeah and Zach and I had a little 3 lb yorkie-poo that moved here with us too! You would think it would have been straight up cray-cray but it was great! Zach helped out with things my Dad had a harder time doing in his chair, I did what I could for my parents when I felt okay, my mom helped me when I was hurting, I got my precious shower, and we had lots of fun game nights that made it even better! It wasn’t always easy merging two families, one brand new and one… no offence… kind of old. But overall it worked out, kind of surprisingly well!

Next thing we knew Zach was graduated and I was knocked up! We turned one of the guest rooms into a nursery and we were ready, what’s one more person in this big ol’ country house!

Turns out… moving here was the smartest most necessary decision we have ever made. I thought taking care of myself with IC was hard but taking care of a baby by myself with IC is impossible. There are days when I can’t get out of the shower until 4 or 5 in the afternoon and my Mom happily keeps Titus all day with occasional stops by the bathroom for visits and freshly pumped milk. The best part is I can focus on me and my horrible staff of bladder workers because I know that Titus is just as well loved and taken care as if I had him!

To make myself feel smart I wanted to add this snippet from an article about multi-generations living together… A multigenerational household is defined as three or more generations living together. While such living arrangements have been common among the Asian and Hispanic cultures, only 4% or 4.2 million American households are multigenerational. However, between the years of 1990 and 2000, multigenerational households in the United States grew by 38%. Since 2000, housing preferences lead experts to believe that the trend has accelerated. 

See! It’s not that weird! It’s maybe not the most stereotypical living arrangement… but really, when is my life typical!? We make it work and in fact, I would say we are blessed by our situation. My parents get to see Titus every day, they get to be around for my all hilarity, I get to learn more hilarity from my funny mentor- my Dad, my mom makes delicious dinners, I bake tear inducing stellar treats, Zach gets a nice garage to keep his motorcycle in, and he goes to the dump for them! Its really a win, win… my parents help us and we help them! Speaking of help… maybe I should look into some help with humility after reading that sentence… Oh well!

All of these things are great, grand, and wonderful but what really matters…  I have my dear friend, my beloved shower! Not to mention the ones who enable my mildly creepy and unhealthy relationship with said shower… the team of water heaters!   

Shower Power

There I stand minding my own business, washing chicken in the kitchen sink, my hands and aforementioned dirty chicken being drenched with warm water. This apparently is a sign that it’s time for those pesky muscle workers to take their break and off they go. My whole bladder empties. Soaking my loose jeans (as to not disturb my urethra, bladder, or recently operated on interstims) and making a wading pool of urine around my feet.

So I ditch my baggy jeans in the puddle for some one else to clean up and I waddle up the stairs like a happily drenched penguin (they of course don’t minding being wet… or covered in their own tinkle). I walk into my bathroom, turn on the shower to the perfect temperature without even looking, strip off the rest of my soggy clothes, and hop into my safe haven.

I sit down in the tub like I’m taking a bath but the shower pours all over my painful regions and I pull the shower curtain liner in front of me to keep my upper body relatively dry. Next to the tub I have a table for my beverage and snack, a short chair with my laptop, and a pocket sewn into the curtain for my breast pump, kindle, and cell phone. I settle in for a long winters shower…

This is just one scenario of many, but this actually happened today. So that’s where I am now, writing this very blog. It’s the only thing that eases the pain. We have 2 water heaters and a tankless one as well… my record is 27 hours in the shower without getting out once. That was a long, wrinkly toe, sore bottom day. That, of course, was an extreme, most days I spend 5-8 hours in here.

I can’t really describe why it helps so much… but after 10 years of this being my only sure fire pain reliever I have come to think of it as the all healing shower. Seriously… have a cold? Take a shower. Hurt your toe? Take a shower. Nauseous? Take a shower. And you think I’m kidding… When my 7 month old son was teething I kept saying “LET’S GIVE HIM A BATH!” He enjoys a bath as much as the next little fella but its magic power didn’t heal his aching gums like I expected it to. Now that I think of it… maybe it was because it a bath and not a shower! Eureka!

I have lived my life in the shower… When I was in high school I had to do all my work from home due to my IC so most it was done in the shower. When Zach and I were dating he would sit outside the bathroom door and we would chat until I could get out. I planned my wedding in the shower. I spent most of my pregnancy in the shower (not too hot of course) until I was too big to get to the floor. I have nursed Titus in here more times than I can count. When I’m hurting too bad or I need to take medicine I pump in here. I sleep in here. I eat meals in here. Oh yeah… and some times I actually like wash my hair and stuff in here too!

It’s hard on relationships to practically live in a porcelain rectangle (are tubs really made of porcelain these days? Not sure.) with water pouring over my painful bits and without a stitch of clothes on. I do, however keep a folding chair in the bathroom for visitors. This very evening my husband sat in here so we could eat dinner together, so romantic!

My wonderful Mom also stops by regularly to visit and usually brings Titus too! It’s hard to be held captive in here and not be able to get out to be a Mommy to my sweet baby. It usually helps to see him but some times it rips out my heart to see him and think of all that I’m missing or hear him fuss and not be able to do a thing for him from in here.  

For those of you with IC if you’re thinking of trying this for pain relief I totally recommend it but get ready for it to be the best and worst thing in your life. You will never know what you did before you discovered its magical pain relieving qualities but it can be devastating to miss out on life while you’re a prisoner in the porcelain prison.