Friday, November 15, 2013

If it's not one thing...

September 2011- Cesarean Section to deliver my son
October 2011- Mastitis
November 2011- Interstim revised.
December 2011- Mastitis
January 2012- Mastitis
February 2012- Diagnosed with severe postpartum depression
March 2012- Shingles
April 2012- Double interstim revision
June 2012- Cystoscopy with hydrodistention and Botox
September 2012- First horrible Urinary Tract Infection of many
November 2012- Cystoscopy with hydrodistention and Botox
December 2012- Anaphylactic reaction to a mix of Nucynta and Zofran
January 2013- Anaphylactic reaction to a mix of Vicodin and Zofran
February 2013- Laparoscopy to laser off endometriosis
March 2013- Cystoscopy with hydrodistention and Botox
May 2013- Got off birth control to start trying to get pregnant, Endo not happy!
June 2013- Started hormones to induce period to get pregnant
August 2013- Dystonic reaction to Tigan, in the ICU for 5 days
August 2013- Unable to walk for almost a month after the dystonia
August 2013- Finally started the period I had been waiting for... too late. 
August 2013- Cystoscopy with hydrodistention and Botox
September 2013- Full hysterectomy
October 2013- Recovering from surgery and adjusting to new hormones
November 2013- Endoscopy with several biopsies

Those are just the things that stick out in my mind… There have also been run of the mill colds and other normal life dramas… Oh and also chronic UTI’s, chronic nausea, occasional vomiting, endometriosis and Interstitial Cystitis.

Just typing those things it seems ridiculous that I could have experienced these things in the last 2 years… 

Like seriously, if I read a book and the main character had all these things happen I would be rolling my eyes at the absurdity and over exaggeration… I wish I could say that was the case.

These are just straight up facts.

I was just saying to my Mom the other day as she drove me to my Endoscopy how true that saying is for me, "if it’s not one thing, it’s another". The problem is all of these things I highlighted are horrible but the days in between are really hard too. So even if I’m not dealing with shingles, an infection, or recovering from surgery I am still dealing with chronic, unrelenting pain!

I hate saying this. It’s my most hated statement in the English language but… It is not fair. I’m sorry. I hate to say it but seeing all that I've gone through typed out...  it’s really not fair.

I feel like I deserve a break. Like a month long vacation on some tropical island where they bring me food and delicious drinks while I lay by the pool or on the beach reading good books.

But that’s not the case.

You might not believe me when I say this but really I don’t get like this very often… this “Poor me, pity me” attitude. Usually I’m a pretty positive “take each new day as it comes” kind of girl but sometimes I need to just write down all the horrible things that I have gone through and feel bad for myself for a minute.

So I did. I’m over it now.

It has been a hard couple of years, no doubt about it!

BUT! My son, bless his sweet heart, is very much like his Mommy and he feeds off of my emotions a lot. So we are happy to stay in jammies and read or watch movies all day, eating snacks on Daddy’s side of the bed (so we don’t get crumbs on my side)! Plus my Mom is my understudy in life. On days when it hurts too bad or I’m too drugged to even do that my Mom happily takes Titus and they go about their day.

Having a snack on Daddy's side of the bed! (We love you Daddy!)

Unfortunately my son is very much like me in not so great ways too… He doesn’t like change and he gets overwhelmed really easily. So now that I’m recovered from my hysterectomy and trying to start living some semblance of a normal life… he’s sort of panicking! He loves playing outside and going on some outings but new things like going to our Kindermusik class are so scary… He didn’t leave my lap until the last 5 minutes of class. Although nothing is worse than me trying to pawn him off on some kind volunteer in the toddler class at my new MOPS (Mother of Preschoolers) group or at Church. He clings to me like a baby monkey the minute we walk into either building and starts to cry the minute we walk down the hallway towards his class… Last Sunday was his first church service he made it in class the whole time! (He sat on one of the teachers laps and cried on and off the whole time but hey, it’s progress!)

Titus getting a stamp after Kindermusik class... Maybe it's not so bad? 
So anyway… We’re adjusting. I am still battling daily pain from my IC and my chronic nausea but my endometriosis is gone! Praise. The. Lord! So each week we are trying to do a little bit, even if I end up in bed for two days after every busy day. But, it’s worth it! (Or so my Mom tells me…)

We’re entering into a world of change… New classes, groups, friends and this toddler business isn’t coming as easy as infanthood did for me. The big three (moving Titus to a toddler bed, potty training, and taking away his precious goody (pacifier)) are staring me in the face wondering when, how, why but I’m trying to just relax and enjoy these last three lingering babyhood things. Plus like his mommy, he likes to take things slow…

So we’re going to MOPS every other week, kindermusik when we can and church every Sunday. Then resting in between. It’s good. It’s progress. It will take time to adjust but I’m praying that we’ll have somewhat of a break and can get into a good routine before the next storm hits! 

Today I go in to see my urologist. The day is finally here. I am hopeful. Believe it or not, after all these years I still get my hopes up each time. I'll post an update if anything newsworthy comes of it! 

Thanks again for reading! Can't believe people have come to my blog almost 18,000 times just to read my random mutterings! Very humbling! Love to you all! 

Monday, November 4, 2013

Recovery and healing.

I've showed you all some strange things... But I had to share this picture I instagram'd of my 3 tiny incisions just 5 weeks after my total hysterectomy. I'm utterly amazed at how much they could do from those three slits smaller than bad paper cuts!

5 weeks post-op. One on each side of my lower abdomen and one in my belly button! 

You know what's really weird? Weirder than showing you my flabby, stretch mark covered tummy... I keep thinking about the dish of my innards... As they pulled organ after organ out of me what did they do with it all? Set it in some metal dish or straight into some blood soaked trash of sorts... That's disgusting. I know. But I always think if I share some of my messed up thoughts I might rid myself of a few.

I kind of would have liked to be a fly on the wall of that OR... Watching my doctor make such tiny incisions, send different tools and scopes into them, then deliver each piece of me the same way a baby would come out...

But then again I'm sure I'd get swatted because who wants a fly in an operating room...

Speaking of operating rooms... That's my most favorite part of having surgery. From the moment they unlock the wheels of my gurney in pre-op and I’m pushed towards the big sterile room until the moment I'm knocked out.

The OR nurse comes and gets me. They're usually very friendly and upbeat about the whole thing. They remind my mom they're taking good care of me. They smile patiently as we say our "see ya soon". Then off we go through the rubber "do not enter" doors. Then it's just me and a dozen medical personnel. They're all there for me! I'm the star of the show!

One time the nurse sang "Dancing Queen" as we entered the big white and silver room, it was quite the dramatic entrance!

I can't see most of their faces because they're covered with masks but I can see smiling, reassuring eyes and I can hear care in their muffled voices.

While one nurse gets me on the table perfect positioned, another sticks cold monitors all over me and straps a blood pressure cuff to my arm. The anesthesiologist, my best friend while I'm there, sits up by my head; he talks gently and reassuringly while he gives me the feel good cocktail through my IV.

I'm sure it's a policy or maybe just out of respect but while each nurse does their specific job they me what they're doing to me. "I'm going to put a pillow under your hips", "I'm putting this monitor on your back", "I'm putting your arm with the IV over here"...

At first I try to help them but pretty soon that "cocktail" hits and I don't care what they're putting where. I'm a rag doll.

Since I'm the star, everything I say is heard and granted, every joke I make is laughed at. I like to have a good rapport with my surgery staff. I compliment them on cute scrubs or pretty eyelashes. But somehow I think the drugs make everything exaggerated and silly because I can hear the smiles in their voices.

In no time the meds start kicking in for real and I start slurring my words, a nurse or doctor usually tells me to sleep well and then it's all dark.

That's it. Next thing I know I wake up in the recovery room covered in pain.
That part's not fun.
So here I am 5 weeks since surgery and so far that was still the best part of the whole thing.

I've been dependent on dilaudid for my IC pain so when I got home from the hospital with that as my only pain medication it barely touched the sheer agony. Since my body is used to it I had to take 1, every 4 hours, around the clock for weeks just to keep my glazed eyes clear of tears from the pain.
BUT! Finally I'm starting to do much better and I'm back to taking just 1 most days. I still have some stiffness, it can hurt to bend and every so often I still have pain inside where they pulled everything out then sewed me up. But overall I'd say I'm 90% recovered!

Believe it or not, all that physical pain wasn't the worst part of my recovery... Another aspect of having a full hysterectomy at 26 is that I'm now and will forever be taking daily estrogen pills so I don't accidentally turn into a man or something...

That might not be why.
Anyway. Since I have had endometriosis since I was 12 and estrogen is the enemy of said curse, I've always been on meds to stop my body from producing estrogen. Other than the two times I was attempting to get pregnant and while I was pregnant with Titus, I have never had estrogen in my body.

Due to that, about a week after surgery I started having all these crazy symptoms exactly like when I first got pregnant... My boobs hurt so badly. So bad! I would just lie in bed with a heating pad on my abdomen and ice packs on my chest. Not only were they so tender and sore but they were leaking sticky colostrum just like when I was pregnant. Sometimes when they were especially itchy and achy I'd look and there was a drip of colostrums. Sometimes there wasn't any and I'd try to manually express some desperate to get the pain to stop. I pulled and squeeze my once overly productive breasts but that did nothing but inflict pain...

Turns out milk coming in feels very similar to milk drying up.

It was so cruel and frustrating... I literally almost took a pregnancy test because I was convinced they forgot some fleck of my reproductive system and somehow there was a tiny baby trying to survive on it... Zach convinced me Dr. Brown would have noticed that and my heart was shattered once again.

After two weeks I finally called and they reduced my estrogen from 1 mg to .5 mg a day and now I finally feel like it's under control! I really don't want menopausal symptoms again (been there, done that twice) but too much estrogen was much worse.

I know the question everyone wants to ask... So?! Did it help your IC?! How's life without endometriosis?!

Sorry to disappoint but I think it's still too soon to know for sure.

The other day I was having a breakdown because I woke up with pain that I'd always thought was endo... But it was a day after doing more than I have in months... So I'm trying to tell myself that was still surgery pain.
As far as my IC... I really don't know! I've been in a bad flare the last few days with full blown symptoms. Urgency, some frequency, incontinence, bladder pain, pain during and after urination, ect, ect!

I have an appointment with my urologist in 2 weeks to make a plan of attack now that I'm recovered from the hysterectomy. I want to remove my interstims first but I think she wants me to start cyclosporine first… So we shall see.

As for now. I'm going to do what I can. Push myself to do a little more every day and try to get outside of my mindset of recovery!
Anyway. Just wanted to give my readers a little update on my recovery... It's been a mournful, painful time but I'm happy to be on this side of it so I can start enjoying the life I have with my little family of 3… my strong, hardworking husband who loves us aggressively, my shockingly adorable, quirky, little booty-shaking 2 year old son, and me. The broken and imperfect mom and wife who is trying to do the best I can for these two boys that fill my heart!

My little family on Halloween! We didn't go big this year but Zach was a gun shot victim, Titus was a Seahawks player, and I was a baseball player of sorts!