Change of Plans

I have dedicated myself to this blog and my readers. Never holding anything back. But I have to tell you out of all the doozies I've written... This will probably be the hardest. 

I'm sorry for not posting lately but don't think I haven't been writing. I've been slowly documenting my journey trying to get pregnant while battling my ferocious interstitial cystitis and endometriosis. 

What a journey it's been. It's been 4 months of taking different combinations of estrogen and progesterone trying to get my period to start that I've been suppressing medicinally since I was 12. The last real one I had was the cycle I got pregnant with Titus on. 

But as you may or may not know hormones exacerbate IC and Endo like you wouldn't believe. Picture Endo being a garden that's planted and carefully watered, it grows quite well on its own. But then you dump some ripe fertilize all up on there and you're having salad for days! Of course when the Endo is acting up, the IC gets mad and tries to steal the spotlight back. 

Being the stage that they're both trying to hog has been exhausting and more painful that I could describe. 

So there's that going on. Plus I've been getting UTI's (urinary tract infections) literally once a month and I have a general sense of nausea 24/7.

I don't think I've told you that story... Well. I had hyperemesis gravidarum while I was pregnant with my son, Titus. It was constant, unrelenting nausea and vomiting. I literally threw up every day from the day of the positive test to the day he was born. 

It got so bad around 16 weeks pregnant I passed out from dehydration. So they put me on constant IV's, pumps that administered zofran (the go to antinausea med), and eventually gave me a PICC line (which is a central line that goes from a vein in the arm to a vessel near the heart that can stay in for long periods of time) that administered meds and fluids around the clock, all while taking phenergan (another antinausea med) by mouth and sometimes as a suppository when I couldn’t keep it down. And I still threw up daily and was nauseous all the time. 

I lost 20 lbs by the time I was 20 weeks pregnant but miraculously and thanks to the medicine I ended up with a sweet, chubby cheeked 7lb 11oz baby, Titus James.

Unlike most people with HG, my nausea and vomiting didn’t stop after I had him... It continued while I nursed him for 14 months leaving me around 45 lbs less than I was when I got pregnant. (The only advantage to vomiting for 2 years)

When I stopped nursing it reigned in a little bit. I was rarely vomiting but still the nausea lingers to this day. Oh and by the way I've gained 15 lbs of that weight back. Darnit. 

Another fun fact about my broken body... When I take a particular drug for a long time my body eventually rejects it with a very dramatic allergic reaction. (My body is all go big or go home.) 

So. As of a few weeks ago I was down to only one antinausea med that I could take, phenergan, but it doesn't just make me tired. It makes me sleep the sleep of... Well... My husband. (Imagine a bear that took Tylenol pm before he headed for hibernation.) 

So while I was at some random doctor for yet another UTI I asked if she knew of any other antinausea meds and she basically said "by George yes there is, Tigan!" (She was wearing a Scottish sash, it was all very strange.)

After a bunch of rigmarole at the pharmacy about it being a super old school med, having to call around to find it, and having my sister pick it up… I finally had the new medicine and new hope. 

The next day I woke up with my usual pain and nausea so I happily took my trusty dilaudid and this new tigan stuff. 

Next thing I knew my toes were clenching up all on their own. I had a dystonic allergic reaction to compazine (another antinausea drug) when I was 15 so I knew what was happening.

I was on hold to talk to a nurse when my calf muscle froze up too. I hung up the phone and waddled to the car in my cupcake pajamas, my mom loaded Titus up in his dinosaur jammies and we sped to the hospital. 

By the time we got to the ER my whole body was contorting as random muscles tensed up on their own. My head was literally being forced as far right as it could go. It was like some serious exorcist business... So they rushed me to a room and pumped me full of Benadryl, steroids, muscle relaxers and fluids.

Pretty soon my body had relaxed and they sent me on my merry way. I came home, ate a little bit, and then crashed from all the meds. 

An hour later I woke up, still really drowsy but my toes were clenching up again! We once again sped to the local hospital and went through all the same motions. 

Except this time it didn't work... It just kept getting worse and worse. My muscles were locked up so hard I was shaking. Next thing I knew one very important muscle was flexing in the wrong direction. My tongue. It was closing my throat. Then my pulse went soaring up to 180.

They pushed me to the trauma room and I vaguely remember words like “intubate” and “paddles” being tossed around.  

They quickly decided I needed to go to a bigger hospital, more equipped to deal with this crazy reaction and I needed to get there soon. 

The next thing I remember I was laying in the back of an ambulance seeing the flashing lights and faintly hearing my husband’s voice mixed with the sirens. I mumbled a joke to the medic about my husband being thrilled to be riding shotgun, sirens blazing before another attack send me unconscious again. 

Next thing I knew I was in a big, dark room that I later found out was the Cardiac ICU at a hospital in Tacoma. I was having full on seizures at this point except they weren't considered that simply because I was technically conscious. Whatever. They called them episodes (don't get me started on the word episode... an episode is 30 minutes of Friends not flailing about choking on my own tongue).

I don't remember much about that part... I remember a phase when a doctor told my family members to hold me down when the seizures started and I knew they were trying to help but it hurt so much worse. I could barely communicate. I wasn't allowed to have any food, water or even ice for fear of choking during an "episode" They kept the room quiet and dark as to not over stimulate me. A lot of times I'd open my eyes after one, I would see my loved ones crying and I'd try to say that it was okay. I could never figure out where I was, what day it was, where Titus was, who Titus was with. There was a suction tube on my bed for when I choked on my own saliva and tongue. My Mom and husband used it on me several times. They wouldn't give me a catheter because of my high risk of infection yet they were pumping me full of fluids so I almost constantly had a bed pan under me and still wet the bed dozens of times. My husband slept in a chair not fit for a long meeting much less sleep. My very not touchy sister in law rubbed my leg. I told off a few doctors who tried to say I shouldn't have visitors. I was told I was loved a lot. I somehow knew I was going to be okay.

Other than all that I don't remember much... My family has filled me in on more stuff but I think this story is best told from my perspective. (Expect I’d be remiss to not tell you I was apparently seeing mice playing cards regularly and a parrot on my dear cousin’s shoulder.)

One thing I remember clearly is being thrilled when I was rolled to a bright room with a lovely view in the critical care unit 2 days later. My vitals and blood work had leveled out and though I was still having episodes, they were shorter and further apart. 

View from my room in Critical Care

My husband finally got a cot, I could have water and ice, and the nurses were very friendly... It was much better. Still scary but better. 

The next night they considered letting me go home but I hadn't been able to eat solid food and was still having occasional episodes. Since I was doing better my husband went home to sleep, he had to go back to work the next day. I was only a little bit scared to be there by myself and was thankful to have a very sweet, young nurse on duty all night… Who gave me my first sponge bath and somehow made it not as awkward as it should have been.  

I made it through almost all night without an episode and though the next morning I threw up the bite of blueberry pancake I tried, I was able to drink some odwalla juice and eat a few pita chips. So guess what! I was sent home Monday afternoon! Five days after the nightmare had begun.

I was on strict bed rest for a week and not to be alone for the first few days and not alone with Titus for several days. But most of all... I was never, ever allowed to have any form of antinausea medicine again. I was now considered allergic to it all. The only thing I can do for my nausea from now on is a scopolamine nausea patch, I think it’s usually for sea sickness but it does take the edge off.

I was sent home 2 weeks from tomorrow. Yesterday was the first day I was actually able to walk on my own. My muscles were so sore and weak from the constant tension and thrashing that they would just give out. I fell dozens of times, it was so weird! It wasn't like a big dramatic fall, I'd just be standing and then I wasn't anymore. I said to my sister, "It's not falling; it's just sitting when I don't want to." Sometimes it looked like I was doing some weird gangsta walk and other time it was more like a chicken dance… but I’m so thankful to have my mobility back. THAT was annoying.

More than the exhaustion, soreness, and weakness the hardest part of my recovery has been the constant pain in my heart.  A few days after I got home I realized something… how could I possibly be pregnant for 9 months without any medication to ease the nausea and vomiting? It’s true… it might not be as bad as last time. What if it’s worse though, most people with hyperemesis each pregnancy just get worse. Would I be able to sustain a pregnancy? Would I end up miscarrying? Or what if my body gave all its nutrition to the baby and put my life at risk? 

But if I chose to not risk it… that left me with the alternative… Be a family of 3. Make Titus an only child. Never be pregnant again. Never nurse again. Never have the chance of having a daughter. Never hear my kids laughing in their room when they’re suppose to be sleeping. No one for Titus to commiserate with about having a sick mom. Oh the list could go on and on.

My sister is only 13 months older than me and has been my best friend my whole life. I have done everything with her… I wouldn’t be Deni without Jeny. My husband, Zach’s brother is only 15 months younger than him… they are still inseparable. How could I not give Titus that giant, blessed gift of a sibling?

Oh how my heart was breaking. My arms, my heart, my soul… yearned for another baby of my own.

I kept praying for God to give me a clear answer what to do and then peace with whatever that is. I just felt pain. I just felt incompletion. I just felt disappointment.

While lying in bed sobbing, pleading to God I felt a sudden acceptance. My heart hurt so bad, my breasts hurt, my uterus hurt, my whole body hurt as I realized it would never create and nourish another baby but I knew it was the right decision for my body and my family.

I took it really hard at first. I sobbed for 12 hours straight. I mourned the baby I had never had, that God hadn't even knitted in my womb yet. I cried for Titus who would never have a sibling, for the chance of having a daughter, I cried because I wanted to have a daughter with D name like my Grandma, my Mom and I. I cried for not knowing my first pregnancy was my last- somehow I would have soaked it up more, I cried because I would never nurse again. I cried for my husband who had always wanted two kids. I cried for my family. I cried when I realized this has been God’s plan all along. I cried when I thought about how Titus would turn out being an only child. I just cried and cried…

The next morning I woke with EVEN worse pain than usual so in attempt to squelch it I took two dilaudid that morning instead of just one. Minutes after I took them I knew that was a bad idea without any antinausea meds. I threw up from 9:00am to 6:00pm… Each time I would try to eat a mere cracker or sip water it would come right back up. Titus cried every time he saw me sitting in front of the toilet even though I tried to tell him I was just looking for something in the potty. He was inconsolable. He just wanted me but I was miserable and so fragile. The slightest thing would send me back to the bathroom to vomit. I usually love our evenings with just his Daddy, him and me but I was counting down the minutes until 7 so we could put him down and I could just sleep. When 7 hit, Zach carried Titus to his crib but when he put him in there he just SCREAMED, like he was being tortured. As I watched him on the video baby monitor he climbed out of his crib for the first time.

No matter what we would try he would not stay in his crib… If you know Titus, you know he loves to sleep! He gets in his crib and goes right to sleep. No reading, singing, rocking required. We turn on his white noise and lay him down and he is OUT. He hadn’t fallen asleep in our bed since he was 4 months old. But I didn’t know what else to do. So I sang to him and rubbed his back, he laid there with his eyes wide open but real still. Every time I would stop he would sit up and said “gin” (again) and I would keep rubbing and singing. He moved around fighting sleep until he finally fell asleep on top of my feet at the bottom of the bed while Zach and I whispered.

God works in crazy ways some times. He showed me exactly what I needed to see in one miserable day that ended perfectly. I got a glimpse of how it would be if I was sick without antinausea meds and with a sweet, sensitive toddler around. Then he showed me how much Titus needs me and how content we are as a family of three.

So Zach and I have fully accepted that this is God’s plan for us and I even feel at peace with it… the sadness does still linger… I’m sure it always will. There will probably be days that I’m thrilled with the way it turned out and days where I still yearn for another baby. But God had a different plan for our family than we did. He knows far better than we do.

The good news is now I am excited to hunker down and start treating my IC and Endo. I have pretty much put that on hold until I was done having and nursing babies. There is a medication called cyclosporine that is an immunosuppressant that my doctor has wanted me on so I’ll start that process soon. My interstims have been broken for over a year so we’ll get those up and going again. We’ll do the hysterectomy… It will be good. Hopefully between all of that my health will improve and then I can be an even better mommy, wife, daughter, sister, cousin, friend, aunt, niece, granddaughter…

So that is… I’m sorry to leave some of you in suspense… wondering what in the heck has been going on. It’s been the most tremulous, horrendous few weeks… Physically, mentally, and emotionally…  I couldn’t keep telling this over and over so I wanted to just write it out for everyone and also for myself.

For those of you that have struggled to get pregnant or miscarried you know the pain I was/ am feeling… I can’t do it justice. It’s just raw maternal pain. I know we are beyond blessed to have Titus. It’s not that he isn’t enough! He is MORE than enough. We are so very blessed to have him. He is an absolutely perfect boy, he is sweet and sensitive, he loves music and has some sweet dance moves, he gives fierce hugs and open kisses, he adores animals and pretends to be them most of the day, he is smart and contemplative, he is kind and loving, he has a wild temper but hates to disappoint people, he has bright blue eyes and white blonde hair, he is cautious yet adventurous… I could go on for days. He is perfect.

Titus and I have been doing lots of snuggling and watching Pooh lately as I recover. Love him so much!

Also I know a lot of you are thinking this… what about adoption? YES! I hope and pray that there will be a day that I am healthy enough to consider it. My cousins have fostered and are in the process of adopting two precious kiddos and someday we would be honored to do the same.

I’m sorry if you’re underwhelmed by all of this or if you think I’ve been overly dramatic and vague on facebook… I just needed prayer without explanation for a few days... and it helped so much! It’s just been an overwhelming time for me as I recover from the allergic reaction, my usual miseries, my nausea and vomiting without any thing to relieve it, now I have another UTI, I got off the hormones, and the emotions of making this huge, life changing decision to not only stop trying to get pregnant but proceed with the hysterectomy.

Not to sound like a rapper accepting a Grammy but… I’d seriously like to thank my family for all their support and prayers during this unbelievable hard time: my parents, my husband, all of my siblings, my in-laws, my grandparents, my aunts and uncles, my cousins, and some dear friends. Most of all I am thankful for how close I have felt to God the last few weeks… He answered my prayers quickly and thoroughly.

I’ll keep you posted on the new treatments as I try them!

….. Sorry for the excruciating length of this blog!

Love to you all!

Tell it like it is... kind of.

Hello good and faithful readers! I've missed you all! 

It's been a tough few months... Whoo buddy! I guess the highlight, or lowlight as it were (what does it mean when people say as it were? I don't know but it sounds fancy so I'm going with it.)

What was I saying? Oh right. It’s been tough… I found out that since my previous Botox and hydrodistention via cystoscopy in November my bladder developed the dreaded hunners ulcers. (A symptom that only 5-10% of people with IC are cursed with. They’re ulcers that attach to the bladder walls and can bleed or ooze. There’s no treatment or prevention.)  When I had my last Botox procedure about a month ago and my doctor said my bladder looked like a giant sore and covered in hunners ulcers. I've always had a sad, tiny, decrepit looking bladder but it’s a wreck now. I could go into it way more but basically I sort of panicked for a few weeks. I couldn’t accept that after 13 years of having severe IC there was now photo evidence that it was progressing and doing so kind of quickly. So I just didn’t really think about it and when I talked about it I kind of brushed it off.

When I let myself think about it I was terrified. I was more scared than when I woke up from a dream where a flock of seagulls were fighting over the fruit on a Chiquita Banana hat that I happen to be wearing... I just turned 26 about a week ago. What a whipper snapper I am! But I was diagnosed at age 14 so in the last 12 years my bladder has gone from bad to almost as bad as it gets. This bladder has 60 more years to go…

But I can't keep obsessing. It is what it is. I have a wounded bladder.

So now that you're caught up let’s get to the point of today's blog! 

I am consumed with the cyber world of IC. I'm a member of many support groups, I have dozens of Facebook friends who also have it, and from those I have become good friends with a few that I text with daily. It’s so great being surrounded by people who don’t blush at the word urethra, think vaginal suppositories are more normal than Tylenol, and don’t try to tempt me with IC enemy foods.

So when I'm out in "the real world" I kind of forget that most people don't even know about IC! On Saturday my 20 month old son, Titus and I went to get haircuts… It was a particularly stressful event. Titus’ first haircut at a salon, I was getting mine cut too so I couldn’t supervise or soothe him if he got nervous, and then my husband took Titus to walk outside right by a busy street. The hair stylist could obviously sense my stress and said as blunt as some haircuts, “You must be a worrier.” I kind of chuckled, preparing to laugh it off and replied, “we don’t get out much.” Then she went into a whole lecture about how I needed to get out more  and how important it is for kids to see the world, bla bla bla… If you know me you know I’m one of those “nice people” i.e. a sucker. So I just laughed again and said “well I have some health issues so we try to do as much as we can when I’m feeling okay.”

Of course then she felt bad and tried to back pedal. It was all quite comical really. So then it came, the typical, “do you mind if I ask……”

Here we go! The inevitable question. What if I just said, “Actually I do mind.” We all know I would never say that but it would be kind of nice some times. I really don’t mind talking about my IC it’s just hard to know what to say.  I wish it was as known and feared as like, cancer, and then when the topic comes up I could just say… “Oh I have interstitial cystitis” and they say, “Oh you poor dear.” End of conversation. But no. When it comes up I’d like to pull out my collapsible pointing stick and plastic life size bladder display, find a stage and get to work teaching the ways of IC but somehow that seems overboard.

So before I start my demonstration I have to get a sense of how much the person wants to know… Are they just asking to be polite? Or are they like my Aunt Claudia who really cares but is highly squeamish and can hardly stand the word urine, much less pee? Or maybe they’re those know it all types that want to tell you want new potion you just have to buy that will do miracles. Or maybe, just maybe they really want to know because their compassionate people? Or it could be they’re sickos who enjoy hearing about other people’s bladders? Hard to say… So I start out my lesson on IC kind of slow to get a read on my student.

Generally something like, “well I have interstitial cystitis”. 99.7% of the time their blank, innocent little faces just blink at me waiting… so I continue. “It’s a bladder disease.” This is where you can start putting them into categories… if they say something like, “oh that’s too bad” then I consider them in the polite category and the conversation over. But most of the time people want to know more… but do they really?

Do they really want to know all about the inner workings of my botched bladder? So my next step is to usually say, “It’s kind of like having a UTI 24/7.” This is where the common know-it-all’s jump in… “My aunt Judy had a bladder infection that lasted 13 days, have you tried cranberry juice? She drank 84 gallons of that and took some antibiotics and clippity clop she was better in no time!” Sometimes the most ambitious people from this camp jump in when they hear the word cystitis… they think cysts or chronic bladder infections (cys is bladder (like cystoscopy) and itis is related to infection (like bronchitis) but they are wrongo)…  So they’ll say, “Go down to Smitty’s Perscripty, it’s a little all natural supplement store that my neighbor’s grandsons ex boyfriend (scandal I know… can you believe it!? Ethel never saw it coming, he was her favorite baking partner. Who’d have thunk…) Anywho he owns it and they’ll just fix you right up!” I try to kindly correct them or say I’ve tried pretty much everything but a lot of times when people have their tents pitched and their fires made in Camp Know Everything there’s no convincing them. So I say some thing like… “it’s a little different but similar. I’ll have to look into that. Glad Judy is doing well now and um, congrats to Ethel?”

Side note. Cranberry juice is DEATH for us with IC. It’s super acidic and annihilates our tender, scarred bladders. I have no idea why it helps people with UTI’s but it’s the exact opposite for us. I know it’s surprising, we’ve all tried it… trust us. It’s bad.

So then there are people like Rebecca, my hair stylist who seem genuinely intrigued, they want to know the symptoms, the treatments and usually the long term prognosis. Probably seems more dramatic or something. So I give a quick rundown in laymen’s terms, “Basically I have to go a lot, when I gotta go- I gotta go, I have accidents, and mainly lots of pain. It’s like my bladder is kind of allergic to my urine. I get Botox every 4 months and I have two devices that work with my nerves. I’ve tried lots of things but there are a few other things out there left to try so I’m sure it will all work out!”

It is so hard! I ALWAYS end it with a jaunty positive note that almost seems to erase everything I had said before that… I don’t know why. I guess I don’t want sympathy or for them to feel like I’m searching for sympathy. So I lay it out there then I put it back in a box with a pretty bow so they don’t have to worry.

I wonder if people think I’m dealing with a little tingle in my bladder because I down play it but I feel like if I paint a picture of the reality of IC they’ll think I have to be exaggerating. It’s not terminal so how bad could it be? Right? Wrong. I don’t know. Maybe they won’t think that… Sitting here typing this I do not know why I do it. But I do. Every time.

So after I kind of minimized it the girl making me look like Meg Ryan Circa 1998 in “You’ve Got Mail” as per requested lost interest and moved on. 

My Meg Ryan inspired new do!

Then, of course, I started thinking. I need a new way of things. It seems a tad extreme to carry a brochure with pictures of my desecrated bladder, carefully written descriptions and links to learn more but I hate being dismissed, even if I am basically giving them permission to dismiss me. I know it doesn’t even matter what Rebecca the Enumclaw hair dresser thinks about me or random people I meet at parties (because you all know how much I party! HA! When I wrote that I meant like baby showers but then I read it and laughed because it sounds like I meant at a kegger and I wouldn’t know what a keg looked like unless it truly looks like the ones on Beauty and the Beast that Gaston drinks from?)

Well then I started thinking about when I talk about my IC with my loved ones… Guess what I realized. I do the same thing. Not only do I have IC but I also have a new disease where I cannot end a conversation about my health without diminishing it. I guess I don’t want other people to take on the weight of my IC and I want to be seen as strong and totally positive about my deteriorating bladder. Weird. So then I wondered what do people get from what I say when I explain my IC. Do they get the severity and the pain? The lengths I go to alleviate the symptoms? The impact it has had on my life for the last 12 years? So I asked my Facebook friends who are made up of family and friends both old and new. Well. Turns out even when I feel like I’m making a jumbled mess out of the description of IC I am getting the message across. They all pretty much knew the general idea of IC (except for my Dad who guessed Interstitial Cystitis was when a sister dislikes living out of the country… Don’t mind him.) Which means even when I finish a 5 minute dissertation on IC with a “But it’s ok! We all have our challenges!” They don’t write off everything I had said up until that point. So I guess I’ll keep doing what I’m doing. Surveying the listener and giving the correct response that corresponds with that person’s camp. I will try to be honest and not dismissive about my own pain.

I’m not saying it’s not totally, super awesome to be positive and encouraging about this dreadful disease. I guess I just want people to know the severity and reality of the beast… and I want to tell them in a springy, upbeat positive way without discounting everything I just said. IS THAT SO HARD?!?!? Apparently.

So how do you guys with IC explain it to strangers? Or do you tell them to mind your own bees wax and to take a hike?!? HA!

Until next time dearest dears!

Oh wait, one more thing! I saw this on Pinterest the other day and I laughed for way too long... my husband and sister just cracked a smile but I thought it was hilarious! So I thought I would share! 

It takes a village

Hey readers! I have been missing you all so much! I have started 3 blogs but for some reason half way through I decide they just don’t have the right feel. You my brilliant, suffering IC sisters need more than me droning on about my surgery update my IC diet progress, or a dining out induced flare. You need encouragement and motivation!

So I will just quickly summarize first. Surgery went well- lots of endometriosis and ovary stuck to wall. Recovery went well too and now all the cramps are gone! I have been sticking to the IC diet exclusively and have been feeling pretty great. My Dad was in the hospital for 4 days with heart problems. He’s home now and doing much better. We had a busy, stressful weekend and ended up eating out several times and now I’m in a bad flare!

Seriously, I am suddenly in a deep hole of a flare with no ladder, no rope, and no sense of how long I'll be stuck here. I am having severe pain that never dips below a 7 unless I’m in the peak of the drug cycle. I’m having frequency that’s having me going pee every hour or so and I’m even waking up several times in the night to pee. Of course then it’s nearly impossible to fall back to sleep because it hurts so badly. My urgency is intense too. If I don’t go immediately when I need to I lose completely control of my bladder and empty it then and there wherever I am. I have peed in the car, on the couch, in bed, on the kitchen chair, ect, ect. I've ditched pants all together to avoid having buckets of soggy, pee drenches pants to be washed. My new uniform is any long t-shirt (my favorites are my hubby’s well worn and snuggly ones) and a fetching pink robe. It’s not too atrocious looking…

At least that's what I'm going to keep telling myself.

So I am taking narcotics around the clock and spending lots of time sleeping off the meds and the pain or in the shower. So that leaves my handsome 18 month old son, mommy-less, which brings me to the title of this blog. 

Pretty much every blog I mention my son, Titus, how could I not? He's the most brilliant, adorable human God ever created! (Perhaps some bias involved in that statement...)

Anyway, I struggle with feeling like I'm not good enough for him. God gave this perfect child to such an imperfect Mom but then I remember that God knows me well and he is a good God, so he gave me what I could handle! SO! God gifted me a perfect angel baby! Don’t get me wrong… he’ll fling himself to the ground when he doesn’t get to play with the cheese grater but he does it cautiously and after handing over the weapon.

Yesterday while laying in bed after a drug induced nap I heard Titus giggling and then I heard the deep soothing cadence of my Grandpa's voice as he read to his Great-Grandson a Thomas the Train book. In spite of my pain and drug soggy brain I smiled as I realized...

Titus isn't missing out when I’m flared. On the contrary, he's the luckiest boy ever. Not only does he get to spend lots of down time with his mommy who adores him and his daddy who loves to play with him. He gets to hang out with his Grandma and Poppa who think he's literally made of gold and should be cherished as such. Also his Great Grandparents who love him maybe even more than his Mommy (probably not though… they like me a lot, I’m the baby heh heh)! Plus my sister, Jeny comes over and helps with him a lot and shows him how to do naughty, silly things like puppy kisses (basically licking people, ew.) If that's not enough he has more aunties and uncles, cousins and second cousins, and two other sets of Grandparents that are always happy to spend time with him!

At least that's what I'm going to keep telling myself…

Sometimes I feel guilty that the time spent with me is usually low key. Playing blocks, driving cars, even watching cartoons on occasion but you know what that means?!? He's so snugly with me! He is more lovey with me than anyone else, he can barely help it! He wraps his chubby arms around my neck and squeezes so hard and he showers me in a variety of kisses including Eskimo, butterfly, good old smooches and of course puppy kisses (thank you Jeny). Granted, sometimes his overwhelming love is uncontainable and all he can do is take a small bite of his momma! Truth be told… the words “I just want to gobble him up” have slipped out many times so maybe it’s just pay back?

I guess it doesn't literally take a village to raise kids in our culture and time but I think a child that is lucky enough to be raised by many generations and relations is a blessed child indeed! He will be shaped and molded by many! He will have different perspectives, learn things I don't know, do things I don't do, and become his own unique blend of all these adoring family members. 

Maybe he'll have his Dads knack for knowing random facts, his Grandma's pure compassionate heart, his Poppa's teasing nature, his Great Grandparent's wisdom, his uncle Jared's quick wit... Ect, ect! If he took something from each of these people that love him and will guide him throughout his life, he will surely be a great man. 

At least that's what I'm going to keep telling myself…

But seriously... Give yourself a break my IC sisters! We live with debilitating pain and symptoms every day! I guarantee there are people in each of our lives that love us and think we're marvelous, who would be honored to help us! Whether it is by watching your kids for you, making you some dinner, or even just letting you vent to them. Let them help and let your children be blessed by experiencing new things with other people that love them! Do it for your family members who feel useless to help your pain, do it for your kids, and mostly do it for yourselves.

These people are here for us to ease our burdens. We aren't meant to do it on our own and truth be told with IC, we can't do it on our own whether we like it or not.

On that note thank you so much to all my loved ones who have taken Titus and me under their wings. I am so happy that I have so many people in my life that I trust to teach, guide, take care of, and play with Titus. I will admit, it can be hard to miss out on things and not have the opportunity to experience every tiny thing he does but I am so happy these people that love him are getting to experience with him! Not only are we lucky that they can help but I like to think that they are lucky to spend time with my brilliant and entertaining little critter.

At least that what I’m going to keep telling myself…



SIDE NOTE: I started a new facebook group for people trying to live the IC Friendly Lifestyle! I have already learned some great tips and recipes on there, please come join us! https://www.facebook.com/groups/iclife/

Two Peas in a Pod!

IC is like a preteen girl at the mall. It travels in a small troop never veering too far from its gal pals, perhaps less glitter than a girl of such an age (please tell me preteens still wear glitter?!?) but the analogy is viable none the less. IC is a popular little thing with many potential besties waiting at its skirt to be accepted into the clique of chronic illness.

As far as I can tell after meeting hundreds of people with IC over the years, some of IC’s closest bosom buddies are IBS- irritable bowel syndrome, Fibromyalgia, vulvadynia, PFD- pelvic floor dysfunction, anxiety, and depression. However, I would say IC’s BFF is endometriosis… that little… meanyface. Those two are just two peas in a pod... you can't go too far with one without meeting the other...

I am very fortunate that out of all of those listed I am only cursed with a small handful including IC, vulvadynia, pfd and of course… endometriosis. Man, I really hate that one and it takes a lot for me to hate something that I’m comparing to a preteen in low rise jeans and  parent forbidden make up. (I have a special love for the pre-teen age, maybe because that was right before I got sick or maybe just because drama back then was never more than who had held hands with who and which house my friends and I would spend the night at that weekend.) Never the less, this little endometriosis poser isn’t what she may appear. She’s a cold hearted, pelvis stabbing, devil mistress. So there.

Before the letters I and C had any special meaning to me my journey with endometriosis was quite under way. I started my period at the innocent age of 9 years old and problems started not long after. Each cycle progressively brought worse pain and harder cramps until my Mom announced we were going to see a “women’s doctor”… I promptly stated that I would not be attending any such appointment and she should have a merry time without me. To further prove my point on the day of the appointment, with help from my ever-eager-to-help-me-get-into-trouble sister, I tied myself to a tree with a water ski rope. 

Now you see why I had a ski rope lying around... I had some mad skills back in the day! 

After untying me from the giant tree that our tree house resided my Mom herded me to the car and we headed for the appointment. Despite all my fears and further proving my Mom's validity the appointment ended up being totally fine! The kind, composed doctor made me feel totally at ease even though this doctor was a… MAN! He was the sweetest man I could have conjured to chat with about my young lady business. Dr. Dennis Brown is his name and I couldn’t be more proud to be his patient still to this day.

He prescribed me a low dose of birth control pills to help regulate and ease up my cycle and said to come back if it didn't help. Later after a conference with my Dad I was told it would just be called my “medicine” to keep any questionable thoughts from others at bay.

Of course the “medicine” did nothing to alleviate my symptoms and I found myself back at the doctor in worse pain than before. So at age 14 I went “under the knife” for the first time. During that first laparoscopy my kind sir of a doctor determined that I already had fairly severe endometriosis and he lasered off every trace of it.

No matter what kind or how high a dose of “medicine” I took my cramps came back within a year of the laparoscopy. So my faithful and sure doctor determined that we had to stop the growth and the only way to do that was to go through menopause. So out came the heavy duty drugs. I was to come in once a month for an injection of a drug called Lupron that would force my body into FULL BLOWN menopause at the shockingly young age of 15.

Young and sick but still smiling! I admire young me! 

Though the cramps and deep pains did start to subside the side effects from the drug were intense for my already wonky, hormonal, teenaged self. The hot flashes were the worst part, I would be somewhere minding my own business when SUDDENLY my blood would seemingly burst into FLAMES! It was heat coming from deep inside me that could not be distinguished by any amount of cold. When the hot flashes came I tried freezing showers, standing in the cold weather outside in my new uniform of shorts and tank top, even rolling down the window in the car with freezing rain pelting me as I hung my head out the window like a drooling German Sheppard! Eventually I stole a dress-up feather fan from my niece that I used until it looked like a badly plucked chicken

The mood swings were just as intense. I would be fine and then suddenly, not fine. The most infamous story is about me sitting on the couch sobbing as my mom and sister stared at me with concern from the kitchen. I was crying over a commercial advertising Bounce dryer sheets, it was something about a mom and daughter skipping through a field? I’m not sure…. It got me good though. Deep down. I don't think I have any buried emotions about laundry products in general, maybe some counseling on this topic would be helpful... 

After 9 months or so of being on the Lupron my doctor decided to take me off of it and put me on a back to back birth control that hopefully wouldn’t allow my period to ever rear its evil little head while continuously taking it. Surprisingly enough it worked for a while, or maybe it was just the severity of the IC distracting me… hard to say…But suddenly at age 19 my endometriosis showed back up with a vengeance and my doctor put me immediately back on Lupron. Full on side effects and all.  As my now husband would attest, I sweat my way through our dating life. Attractive.

Dating my now hubby, he liked me even though I was 20 and  menopausal! 

Fast forward 2 years and you’d find me still on lupron and a happy newlywed on my honeymoon in beautiful Maui! It was the most perfect setting, I had my handsome brand new husband at my side, adorable bathing suits ready to be swum in, tall pina coladas ready to be drunk… and yet I laid in the bed at the hotel a sad fraction of the time in sheer misery. I don’t know why that cursed endometriosis chose then to make its returning debut but it did.

On our honeymoon! Even though I was hurting it was still a once in a lifetime trip and full of treasured memories! 

Two months later my new husband brought me home to our new love nest after my second laparoscopy. My still faithful doctor had now diagnosed me with stage 4, out of 4, endometriosis. Hello life sentence.

I stayed on track with the lupron and endured the sweating and crying for 2 years after that until suddenly I got a fever. Yep, a bad fever that just wouldn’t let up, I had full blown “Iwantababyosis”… Happens to the very best of us. So my doctor that had known me since I was ankle high to a June bug… or however that saying goes… was suddenly talking to me about my chances of having a baby!

Obviously the first thing we had to do was stop the injections and start my dreaded periods back up but the one trepidation was the longer I was completely off any sort of drug to regulate my hormones the more the endometriosis would grow, and with a vengeance after being set free! So he prescribed me progesterone to try to jump start my period and after a short (i.e. Very long) 10 months I had my first period in 4 years. It was the worst week of my life, seriously no doubt, the worst week of my whole life. Dr. Brown gave us intricate instructions on when to um… attempt to make a baby… and we followed them to a T but when it was time to take the pregnancy test a big fat NEGATIVE was all there was. After two more months with the same miserable periods and giant negative results my doctor suggested we try a beginning infertility drug called Clomid. This time he had even more detailed directions to follow but we were rewarded with a POSITIVE!!!

Holy hot biscuits. I was pregnant. I was going to be a mom.

Finally pregnant and so happy to be!

Of course as the next 9 months flew by, I had no endometriosis pains and was blessedly hot flash free… but unfortunately for my loved ones the whole hormone thing was kicked up even a few more levels higher!! I could have saved a thirsty country with the gallons of tears I cried! 

Next thing I knew, at the age of 24, I had delivered a chubby cheeked vision on September 12, 2011. Hallelujah.  Every cramp I had every had was entirely worth it because it made this tiny person possible. My body that had betrayed me in every single way for so many years had given me the best gift I could ever be given. My heart started beating solely for him. What a small price to pay. 

Love at first sight.

In spite of exclusively nursing my little bundle my vindictive period was back within 3 months of my son’s birth and since I was committed to nursing him I refused to go back on the Lupron and settled for the Depo-Provera shot instead. It took about 8 months after starting it for my period to stop again but good riddance. Unfortunately the powers of the depo are only so strong…

Three weeks ago the sweet noise from the baby monitor of my now 17 month old greeting morning with his usual sunshiny joyful babble woke me but before I could even open my eyes cramps stole my breath. I tried to be calm and assess everything throughout the morning but finally I asked my Mom to take me to the emergency room. I was trying to convince myself maybe my appendix had busted or something. Of course it hadn’t… I was sent home saying to eat some bland food and drink lots of water. The next morning the pain was just as intense so I called my pal Dr. Brown and fortunately he had an appointment that very day.

After explaining everything that had been going on he determined the best thing to do was to go back in and see what was going on in there. He explained that ovaries are as sensitive as an eye balls so even if a bit of that nasty endometriosis has grown back it could definitely be the culprit. Unfortunately he was scheduled pretty far out so I've been so crampy for weeks with nothing to do but wait for the day to come that he can laser all that poison off of my body. 

Not feeling good these days but so happy with my little love! 

Thank Goodness that day is finally here! I am going in later today for my 3^rd laparoscopy which is also my 21^st surgery overall. If I remember correctly the recovery isn’t too bad and I should be back to my version of normal in no time, hopefully without the cramping!!

This blog ended up going in a completely different direction than I expected but it was kind of cool to write out my endometriosis story just 12 hours before lasering it off for the third time in 11 years. This has basically been my endometriosis story in a nut shell… if a nutshell was the size of a rather large hot air balloon… Anyway please pray that I get some answers, lots of pain relief, and an east recovery! Thanks for reading, I'll update again as soon as I can! Hopefully with pictures of my mutilated ovaries, cool! 

You are what you eat!

Hey faithful readers! Sorry for my little blog hiatus! Contrary to the norm, I have been taking care of my sick family rather than my family taking care of a sick me! A horrible stomach flu bug has been roving its evil little self around the house! Fortunately I have lots of antinausea meds to ward it off. So far. First it was my Dad who was really sick, then poor Titus baby, even my unstoppable Mom got knocked down for 24 hours, and now my hardworking hubby is battling. So due to him being sick and my usual pain, my parents took Titus to church with them and I finally had a minute to write this!

So about two weeks ago we had my brother-in-law and sister-in-law over for pizza and cards. I had 2 pieces of deliciously saucy, Canadian bacon and pineapple pizza. I didn’t even really think about it. My flares have been so intense lately no matter what I do or don’t eat. So for the most part I don’t worry about sticking to the IC diet. I figure if I’m going to be hurting anyway I might enjoy my one vice, delicious food!

My brother-in-law has severe ulcerative colitis and has been in and out of the hospital over the years, he’s tried every treatment there is and nothing has really helped long term. So after much gentle nudging from his wife he decided to try a Naturopath doctor. Her biggest tip was to stick to the UC diet. Which from what I understand is mainly no gluten, no dairy, and no red meat. So he grudgingly stuck to it and what do you know! It started helping! A few months later he was practically symptom free! On Thanksgiving he shared his hopeful gratitude that he was finally on the other side of his disease. So now, 3 months later, he followed in his beautiful wife’s footsteps and gently nudged me to try sticking to my IC diet for a while to see if it would at least help.

Honestly at first I was like yeah sure sure… I’ll get right on that. After they left I got in the shower and took pain meds and started googling the next treatment steps for IC. According to what I found the only things left is that immunosuppressant drug and then a bladder removal. I did some research on the bladder removal and I REFUSE to do that. Believe it or not, I am actually a really healthy person except for my IC and endometriosis. I do not want to trade the IC for having tons of other health issues including bowel problems. I pride myself in my perfect regularity.

So right then I decided I was going to jump into the IC diet head first! Of course I tried the IC diet down to not a single chocolate chip when I was first diagnosed but that was almost 13 years ago! So I was committed to trying this again!

I went to the store and spent about 300 dollars on restocking our pantry and fridge with IC friendly things. I bought organic, no preservative or additives, nothing prepackaged, no spice and basically food in its purest form. Which is expensive but at least it has lasted us almost two weeks.

I wanted to share my menu with you guys to at least give you an idea of some meals that maybe you hadn’t thought of. I am excited to continue eating like this for my IC but also for me, and my families, general health!

For breakfast I got organic bagels and cream cheese, delicious blueberry bread from a local bakery, whole wheat toast with blueberry spread or honey or just butter on top, also I found some cereals that are IC friendly as well!

Lunch is always my hardest meal… I don’t really like sandwiches except peanut butter and jelly, which is IC friendly with the blueberry spread. So even before I started this diet I usually just end up having leftovers from dinner the night before. I would love to have a salad but I have yet to find an IC friendly dressing… If any one has any good IC salad dressings or other lunch ideas I would love suggestions!

Dinners are my favorite! I love to cook for my family so it was fun getting creative making our favorites totally IC friendly. I made turkey burgers with mild cheddar cheese, avocado and lettuce. I made salmon with coconut rice and maple glazed carrots. Also we had steak, fried potatoes and broccoli in a cheese sauce. The next night I made sautéed shrimp in a homemade alfredo sauce over spaghetti with garlic bread. One of our staples is roast beef in the crock pot so I made that IC friendly one night and served it with mashed potatoes, gravy, corn and homemade biscuits. The next night I used the left over beef to make French dip sandwiches with potato chips and veggies. Also I made a quick sweet potato and ham hash one night. It’s all been really good and honestly I haven’t missed all the spices I usually miss. I basically just use salt and garlic now then put pepper on the table if anyone wants to add it to their own.

For little snack I bought some easy things like string cheese, raw almonds, pears, pink lady apples, saltine crackers that I put peanut butter on, Annie’s cheddar bunny crackers, tortilla chips and plain kettle potato chips!

Of course my favorite food is dessert which I took care of that too so I wouldn’t be tempted by any chocolate that may be lingering. I bought little chewy caramels as an easy little pop of sweetness. For my ice cream fix I got vanilla and I drizzle caramel sauce with chopped raw almonds on top, YUM! I also planned on making oatmeal and peanut butter cookies but haven’t yet.

As for drinks I have been sticking to water and milk exclusively. I’ve never been much of a pop (aka soda us Washingtonians call it Pop for some reason), coffee, tea, or alcohol drinker because they flare me up and I wasn’t old enough to drink them when I was diagnosed with IC so I just never really got the habit thankfully!

When I see it written here it looks like I’m eating relatively normal! So here is the full list of what is IC friendly and IC enemy, http://www.ic-network.com/diet/2012icnfoodlist.pdf.

Basically I can’t have anything that’s spicy, harsh, acidic or not in its purest form. I CANNOT have carbonated beverages, caffeine, coffee, tea, alchohol, juice of any kind but pear (ew), most fruit, most spices, tomato products of any kind, strong cheeses, chocolate, anything prepackaged, processed, preservatives, additives, ect.  

When you are thinking about what you can and cannot have just imagine the food getting onto a cut on your finger. Would you a tomato or an orange squeeze into a fresh wound? No buddy. Our bladders are basically that sensitive! So just eat things that are mild, pure and honestly… kind of bland.

I wish I could tell you I am feeling so much better since starting this diet but honestly it’s pretty much the same but I’m expecting it to take time for my body to rid itself of all the junk! Anyway wish me luck with sticking this out and I would love any other ideas or suggestions you might have!

Thanks for reading! I hope you all have an easy and blessed week!

"Can't get much worse than this"... Insert rain cloud overhead.

How do you wrap up 3 of the most… I don’t even know the word… wonky? days in a row I have experienced in all my 25 years and 9 months of life? Really while I was in it, it didn’t feel like much different than my normal life but now sitting here trying to condense it to one little (okay after reading this over, it turned out really long... sorry!) interesting blog it feels pretty intense... 

Anyway…

Sunday afternoon I had an epiphany. The only thing that has ever really helped my IC is my bilateral (two) interstims. I have had a total of 12 surgeries just on them but the reason why I have put myself through that many is because they do work, when they work! The only time in the 12 years that I have had IC when the pain was under control was when my interstims were working correctly. So I keep trying. I keep hoping that we will achieve the success that we once accomplished with them. Well, I decided to give them one more try, I would call my doctor first thing Monday morning and ask if she would operate on them one more time. I have had them off for 6 months due to lots of “wire migration” and a broken lead on one. I basically had two broken down cars sitting on my lawn. It was time to either fix them or get them towed away!

That evening I started having really bad cramps. All I could do was curl up in a ball with my heating pad. I have been trying to cut back on my narcotics usage so I took some Tylenol PM and hoped a good night’s rest would help and I would wake up back to ”normal”.

Monday morning the pain had nothing but worsened. Yet still my first thought was to call my urologists office about fixing my interstims. I left a message for the nurse and then focused on the weird cramping I was feeling. The random thought kept whirling around in my head... Could I be pregnant? I was late getting my depo-provera shot... Then I started thinking about all the things I had done to this potential baby. Taken several Valium suppositories, pain meds almost daily, and the actual shot! The thoughts were flitting in and out of my mind as my cramps worsened.

The idea of taking pain meds was tempting but every time I held the bottle in my hand I thought but, what if! What if I'm that 1% that gets pregnant on birth control? These cramps felt exactly like the ones I had when I found out I was pregnant with my now 16 month old, Titus! 

So despite the pain I threw on some semi matching, slightly ill fitting (thanks to the dang amitriptyline, I gained 15 lbs in one month. I am so glad I’m done with that junk!) clothes and drove to the pharmacy. I almost got in 3 fairly major car accidents as the pain and emotions distracted me, making my already sketchy driving skills worse. Shaking with nerves and pain I bought a test then drove back in a fog of what ifs. 

At home I forced out a few drips of protesting urine and waited.

Negative. 

I didn't know what to feel. I wasn't surprised by the results but I was surprised by the sadness that enveloped me. We aren't ready for another baby, my pain makes it hard enough to take care of the precious one we already have. Still. There was a tiny glimmer of hope that was squashed faster than it started.

I made myself move past the emotions quickly because I still had the major issue of the excruciating pain I was in. 

Eventually the pain escalated to a 10 and my confused body reacted by vomiting. I knew something was wrong. This was not just my usual IC pain. I asked my mom to take me to the ER and off we went. Dragging a freshly napped and cheerful baby along with! 

When I got to the ER there was lots of talk of appendicitis and my decrepit (freshly padded thank you again amitriptyline) tummy was extra tender to the touch. So the doctor ordered pain meds, fluids, blood work, a urine sample and a ct scan. 

The IV dilaudid worked like a dream and the pain was just a memory as they went about their tests. After about an hour the pain broke through the heavy duty meds. So they doped me up again. Only to hear that everything came back normal and I must surely have some pesky virus! See ya later, don't let the door hit ya!!

I went home with some anti-nausea prescriptions and medicine for cramping that turned out to be an IBS drug? What? 

The IV meds quickly wore off and I was once again sitting in the shower in misery. I popped two Vicodin and waited for sleep. 

Sleep never really came. I curled up with my heating pad all night waiting for the pain to subside. When I did sleep it was full of dreams of the house catching on fire from my heating pad and becoming The Next Food Network Star! (I had a very interesting show, first I did episodes on pregnancy cravings, then baby food, and of course yummy, healthy kid food!  My dream self is a creative genius!) 

When I finally opened my eyes to the adorable babbling of my kiddo over the monitor I was rejoicing that it was actually time to wake up until I realized the cramps were still as present as ever! 

After desperately calling my mom to retrieve Titus, I called my faithful and amazing ob/gyn. Once upon a time he plucked me from my mother’s very womb and then diagnosed me with endometriosis at the tender age of 13! He has been with me through it all and in a circle ending twist, he plucked my son from MY very womb! 

Anyway, I got an appointment with him that afternoon. So I had several hours to kill until it was time to leave. I laid around with my heating pad hoping for a reprieve from the pain when the nurse from my urologists office finally called back saying that my doctor had agreed it was time to fix the interstims and to expect a call from the surgery scheduler. I felt a little encouraged that we were at least going to be taking a step forward with the IC side of things.

My mom was happily willing to drive me to the doctor but she had a few errands to do on our way. The pain and nausea decided to pile in and join us on our ride. The pain was so intense I had sweat beading on my forehead and I rolled the window down despite the rainy, 40 degree Seattle weather.

After my Mom’s checklist was complete we headed for the doctor’s office. I was taken right back with hardly a moment of waiting. My loving, albeit older, Pierce Brodson look alike doctor came in with a genuine sympathetic smile. It was never good news when I was there. We chatted about the pain and he surmised it was probably my endometriosis back with a vengeance.

His conclusion was that he really needed to go in there and see what's going on. It has been 4 years since my last laparoscopy so it seemed like a good idea to me too. It’s just an outpatient surgery with three tiny incisions, they use a scope to look at my uterus and ovaries then laser off any endometriosis growth. OF COURSE my luck continued and he is booked next week and out of town the next so it is scheduled for February 27^th, 3 weeks away. He did prescribe me some dilaudid and said to just try to hang in there until we can get this beast under control.

Today I woke up with the cramping still pretty intense and my usual IC pain pitching a fit that it was being forced to take a back seat. I took dilaudid first thing this morning and have been loafing around watching old “Friends” episodes with my reliable heating pad. Then my urologists office called and scheduled the interstim surgery for March 18^th.

Sorry to have such a long and dreary blog… sometimes my life is such. Although this might be a hard several weeks ahead I am hopeful that the surgeries will lead to some answers and mostly, some well needed relief!

 To end this on a happy note I must share with my lovely readers a little story about my adorable son! One of his favorite things is to get in the shower with me. We have lots of toys and even books in there, we blow bubbles, brush our teeth, play with squirt guns. It’s so much fun for both of us, and a happy break for me! For some reason he likes to straddle my tummy and sit facing me as we enjoy our shower time fun but with these new cramps his almost 30 lbs of pure, sweet baby on my tender tummy is pretty painful. So this evening while he drummed on the shampoo with my toothbrush, I laid my head back and closed my eyes, just trying to get through the pain. When I opened my eyes he had his tiny pointer finger up to his pursed lips saying “shhhhh”! I died. It was the sweetest thing I have ever seen. I try not to show him my pain but even in the midst of it he makes me laugh and feel overflowing love. Here is a picture I took of him this morning just so you can get a glimpse of my treasure!

Hope we all can enjoy the little things in life among the physical and emotional aches of this horrifying disease! Love and daily prayers to you all!