Silent Night

I consider myself a writer... I have for a long time even before I started this blog. I have written numerous poems and started many novels (key word- started). Two of my poems have actually been published. (I wonder where those books are... Probably in the mysterious box of my coats that I haven't seen since our move over a year ago...) 

I know this blog is meant to be about my life and battle with IC but sometimes I just need to write. 

So if you're an IC follower feel free to stop reading and come back next time. 

But I just have to write this and I may as well post it, you all know I wet the bed regularly... So let's face it, I don't really keep things to myself. 

Growing up one of my very favorite nights was Christmas Eve. It was magical. We went to church, then out to dinner at a Mexican restaurant, then we rode home with our eyes glued to the sky searching for rudolfs nose. 

Even with all the wonder, magic and joy that night held I still think my favorite part was sitting in church surrounded by my family when the sanctuary would go dark then one by one candles were lit throughout the place until a soft glow flickered.

Then we would all sing silent night while holding our tiny candles with the handy hot wax guard. It gave me goosebumps and even as a child it filled my heart with wonder and gratitude for Jesus humbling himself and coming to earth as a baby. 

Silent night has been a special song to me since then. It's not just a Christmas carol, it's a worship song. 

I remember telling my mom that someday, before I died, I would sing it for an audience. 

Fast forward to last night. We've had a busy few days and Titus' beloved schedule has gone off the rails! He usually happily goes right to sleep at 7pm after reading a bible story, saying a prayer, and turning on his white noise. But last night he got out of bed and cried at the door calling for me after we tucked him in.

So after a while I went in to see if there was some sort of issue... He was really wound up. I laid him in his bed, covered him up with his "key keys" (blankets) and then I laid next to him.

In his tiny little toddler bed mind you. (If you haven't seen a toddler bed in a while just know that it's the same mattress as his crib... ) I laid on my side with my legs bent and he snuggled up in front of me. Like we were ying and yang. Then he said "sing mama".  

I snuggled him back and I sang. 

Silent night

Holy night

All is calm

All it bright

Round yon virgin

Mother and child

Holy infant so

Tender and mild

Sleep in heavenly peace

Sleep in heavenly peace.

I laid by him softly singing wonderful, worshipful Christmas songs for about 20 minutes. Then I started to slowly get up but his eyes popped open and his tiny arm shot out from under his blankets and pushed my head back to the pillow so our noses were just an inch apart. I sang Silent Night one more time and his beautiful eye lashes blinked several times until they gave in and his eyes closed. 

Suddenly I realized my dream had been fulfilled. It wasn't as my 8 year old mind had envisioned it but it was better. Oh, so much better! 

My heart thundered and my eyes burned from the misty tears trying to escape. My pitchy voice cracked even more.

I let my song quietly end and I just laid there in his tiny bed breathing in his exhale. Petting his downy head. Rubbing his back that seems impossibly small yet massive compared to this time two years ago.

This was the best audience I could ever have hoped for. He loves me no matter what. He loves me so hard he can't even see my many imperfections. He just wants me right there. An inch away from his face, whisper singing him a Christmas song while rubbing his back, knowing he is loved back times a million. 

After one more chorus while choking back tears I prayed. For him to feel peace and comfort in his bed and know how thoroughly loved he is by is mommy, his daddy and most of all by God! 

As I started to get up I told him mommy had to go to her bed but I'd see him in the morning. He blinked a few more long blinks and then he slept in heavenly peace. 

Thank you God. For this season, for this child you entrusted us with, for the many blessings you have given us, for my family, for Jesus. 

Amen. 

Merry Christmas! 

Can you tie them in a knot, can you tie them in a bow?

Heyo! (My sister always says heyo and it's so much more fun than just hey.) So I was just cleaning out my "note" app on my phone where I write blogs from time to time and found this gem of a blog I wrote exactly a month ago. Clearly I was under the influence of pain medication when I wrote it and when I posted it because it never posted however if it made me laugh when I reread it how could I keep it from my loyal readers?! Any woman who has been pregnant, nursed, been on hormones, lost weight or is maybe on the "other side of the hill" can relate! Men, avert your eyes for this one... Here we go. 

11-12-2013

Healing from surgery, a cold, a UTI, really any "extra" thing is so hard for me. 

Not because it's another thing to deal with, although that is hard. 

Not because it's hard to figure out what pain is what, although that is hard.

Not because it flares up my IC, although that is hard.

But because I know that when this extra thing is gone and I am "better", I still have IC. 

I've been counting down the days until my 6 week since surgery mark and subconsciously expecting relief. I mean the surgery pain is gone. I can bend, pick up Titus, and go up or down the stairs. My teeny incisions are healed up... 

(Oh one thing, I apparently did a really bad job at explaining this in my last few blogs... I had three tiny incisions. They stuck their scope and tools in those, then disconnected all the bits... And pulled everything out vaginally. Somehow I made several people thing they pulled everything out through my tiny incisions. Sorry about that!) 

So anyway. Everyone keeps asking me how I'm feeling, expecting this grandiose answer... I'm sure if I was daily waging war against just my Endometriosis, I would be singing an angels hallelujah! 

But as far as I can tell my IC hasn't been impacted at all, good or bad. If anything it just lost its spotlight while I recouped from surgery. 

It's nice to not have the endo cramps but really I've had it pretty well treated with the exception being the last few months when we were trying to get pregnant and then when I was just waiting for surgery to get here! 

I'm still really struggling with adjusting to the estrogen. I'm at .5 mg of estrogen a day and my boobs still feel like they've been used for some sort of boxing training... And! They've shrunk. Seriously. I am no longer a busty lady... I developed early and was always among the bountiful boobed group of girls growing up... I didn't care one way or the other but there they were. 

Then I nursed my thirsty, chubby baby for 14 months with them. They were ginormous. Huge, veined boulders sitting on my chest that I could use as squirt guns in some very inappropriate water fight. (I seriously got distance with those things. I could literally shoot milk across the room... In three directions. 

Anyway. Then my weight has fluctuated all over the scale and my hormones have done all sorts of loopdidoops the last 6 months.

So now I'm left with empty, saggy, pale, oblong sacks. Like if you filled a balloon halfway full of pudding and then tacked them to a wall. That's what they look like. 

Not one single bra fits anymore... The advantage is if I go to a dessert buffet there's plenty of room to stuff extra for later but otherwise it's not great... They sit in there all small and afraid in the deep, dark cavern that my milk filled boobs overflowed out of.

Oh. And what's with my nipples?! I used to have tiny little things... Now I have saucer nipples. Like the actually areola is huge! I'd be happy to pay a dollar for any cookie this size. Then there's my actual teet (are they called teets?) it used to be flesh with the rest of my boob unless I was freezing cold. Now it's constantly at attention and not entirely unlike a cherry on top of a melting sundae! 

(Now, I am not one to invite people to check out my boobs but this is an exception... In the first picture I was 19 with one of my best friends, look at those ta ta's, I mean seriously! Then the next picture is of me in the same dress last month trying to decide if I could pull of that same dress for my husbands Christmas party... A couple minutes after I took that picture it literally started falling off. Sad decrepit little things.)

So anyway! The hormones... These half empty bags previous known as my breasts hurt! And! They're leaking that thick, sticky colostrum just like while I was pregnant. But I'm not. I am wombless. My bra and my body both find themselves with lots of extra room...

So sure I'm doing better from surgery, I'm back to "normal" which is really not very normal. I'm hurting from my IC and I'm still nauseous most of the time. I'm sitting in the shower as I type this. Glossy eyes from the meds and sore. I drank water from my son’s bath toy cup when I took my meds. Yep. I'm back to normal.

So tomorrow I go in for an endoscopy... They'll sedate me then take a scope and send it down my throat into my stomach. I hope they find something. Seriously, I don't even care what it is. I just want to know that there is something causing the unrelenting nausea for the last 2 years. 

I'm not even nervous, it's a picnic compared to other things I've gone through recently. Actually I'm looking forward to the sedation! Maybe that's bad... 

Anyway I'll let you all know how that goes and I have an appointment with my dear urologist Dr. Jacoby on Friday to make a plan for my next treatment plan for my IC! 

So. A month later the update on all this... Still adjusting to the hormones and drinking water out of bath toys. The endoscopy showed absolutely nothing. They did several biopsies but it all looked perfect. So confusing. Also, I'm having my cysto/ hydro/ Botox aaaaand getting my interstims removed in 2 1/2 weeks! Oh and I went bra shopping. I was very surprised with my new size. I’ve never really understood how bra sizes work but the number that comes after the letter was 4 less than I used to wear but the actual cup size hasn't changed! I guess they've stayed the same size just redistributed and migrated. Joy.

Okay I promise in the future when I post blogs while drugged I will verify after the fact! But now you see why I couldn't just trash this one... Ladies, holla if you can relate about the sagging sisters!!! We're in this together!!! 

Do you see what IC?

Christmas is a time to celebrate our God and King who came to Earth in the form of a baby! We celebrate in crazy ways but that's what it's all about! The tree, the trimmings, the lights, the gifts, the Yule log, the fancy appetizers, the ugly sweaters, and candy canes... It's all about Jesus and hopefully you don't have to dig too deep through your bins of Christmas decorations to find him! (Not literally because sometimes you lose your baby Jesus from your nativity and that's totally ok... Well I hope so anyway cuz our precious moments Mary is babyless...)

When my sister and I were teenagers and I was newly diagnosed with interstitial cystitis my dad called a family meeting telling us he had a plan to keep us focused on the true meaning of Christmas. He wrote CTPCOA (pronounced ceptacoa don't ask me why) on a big piece of paper and informed us we were now the Committee to Plan Christmas Oriented Affairs.

We would be doing a Christmas related event every day from the 1st-25th. We did crafts, skits, baking, decorating, shopping, light looking, and so much more! He gave us all numbers that we would go by (to make things less confusing... Sure.) that he picked from his favorite football players... I'm fairly certain my number was OJ Simpsons... (My Dad is a devout USC Trojan fan… he’s not obsessed with accused murderer celebrities or anything)

Anyway! That tradition has continued now for over 10 years! It's shifted a bit each year as our family grows and changes but every year during this time we break out our official CTPCOA sweatshirts with our numbers on the back and set out to make each year the best one yet!

I would say each year is special in different ways but this year feels extra special! My sissy finally moved home from that unfestive state of California (sorry Californians but it's just weird to see Santa in sunglasses and inflatable snowmen by a palm tree) and Titus is at an age where he is starting to get into the wonder and magic of the season!

See? My sweet little elf! 

So since the day before Thanksgiving I have been in holly jolly mode! No time for IC, my chronic nausea and vomiting, or for my grief filled heart over the last few months.

I have pushed through it all, blaring the Christmas carols to drown out my emotional turmoil and anxiety. I push my body harder during this time than any other month of the year.

We've already been to parties, shopping, baked and decorated dozens of cookies, did a fun Christmas craft, chopped down our tree and have it glistening trunk to angel, garland and lights are draped over any available surface, and we've watched several Christmas movies snuggled up by the fire.

(I have to add quickly that this past weekend was my husbands company Christmas party which was sooo much fun! Delicious food, fun dancing, karaoke, and so much laughter with good friends! Then Zach's best friend got us a room at the hotel and we got to spend the night and make a weekend of it! It was so nice having zero timeline or pressure and just spending time with my dear husband who does so much for me! Here is a pic of us right before the Party. I'm so lucky I get to spend every Christmas and my life with this man!) 

ANYWAY, it's only the 11th and my heart is full. Watching my son experience Christmas has been the very best gift. Titus is only 2 so he can't really remember the other two Christmases he's had. It's all new and wonderful to him. The lights, the movies, the cookies, Santa and of course... baby Jesus (that he pronounces "baby Cheesus" by the way.) Don't you wish you had wonder and faith like a child? I do. I wish I could see it all through new eyes. I wish I asked everyone around me to pray all day long just for fun like he does. I wish I read several books a day about Christmas in its purest and most magical forms. I wish I didn’t have any expectations of presents or events so I could just enjoy things as they come! But the wonderful thing about having a child is getting to do all those things with him! Can you even imagine his glee of going to the Christmas Eve candlelight church service or his wonder of waking up Christmas morning only to find that magically presents appeared and cookies disappeared? I’m so glad we're only half way done with this advent time, each day is a treasure more precious than any gift that could be perfectly wrapped under the tree.

The problem is my body gets angry when I ignore it, when I make my bladder wait until the pee is stretching the damaged lining further by the minute. My Scrooge body doesn't seem to care about all the wonder and festivity of this season. I know I'm asking my cranky, diseased body for a lot... I’m going from my general rule of two rest days for every busy day to constant celebration and jubilation. Also, it's past time for my Botox/ hydrodistention treatment but I put it off until December 30th so I wouldn't miss a single day of this magical, beautiful time of year! However my bladder apparently didn't get the memo... It's shrinking and relaxing more every day plus I wouldn't be surprised if that sad lining is dotted with ulcers yet again.

A few days ago the pain showed up with a vengeance and yesterday I lost total control of my bladder twice. Nooo, not now bladder! Please! I have so much I want to do still... We're going to see a cow dressed like a reindeer, a hors d'oeuvres party, a gift exchange with my whole family, more crafts, more celebrations with my husband’s side of the family, looking at lights, an ugly sweater party, the rest of the shopping, oh and all the wrapping!! 

But. Such is life. I'll take what I can get and enjoy every moment of release from pain prison and do as much as I can then but I'll also try to keep the spirit alive even when my health disappoints us all. 

I would rather disappoint myself a 100 times than any member of my family once but it is part of the deal... I'm sorry beloved family members. I'd do most anything to not disappoint you. It's not me. It's my body. I hope they love me and hate my body, hate IC, hate chronic nausea and vomiting, hate endometriosis.

Anyway, I'm going to keep moving on from one day to the next. Doing what I can. Even if that's just snuggling with Titus and my heating pad in front of the tree watching the Christmas episodes of Mickey and Pooh!

Actually if that’s all I got to do all season I would be content.

So Merry Christmas dear readers! Whether you're a family member or friend who just loves me and wants to read my ramblings, a fellow IC sufferer, a support to someone with IC, or someone creepily stalking me... Merry Christmas! I hope you all have joy, magic and JESUS this Christmas!

Merry Christmas from the Jovanovich members of CTPCOA!!! 

By the way, I am planning on writing two hopefully helpful blogs for my fellow IC sufferers very soon so please bear with me as I write these kinds of non-consequential blogs! One is coming about Botox and one about my interstims that will be finally leaving my body after 10 years! Hope your bladders are happy and healthy this Christmas! 

Oh wait, one more thing... This is my 50th blog! I am kind of known for quitting everything... (Rude, I know! Just unimportant things like preschool, soccer, and violin.) So I am super proud of myself and this blog but more than that I'm really thankful for the support and encouragement from my readers all over the world!! Okay I swear I'm done writing now... Merry Christmas!!!