Here I Am Alive

           30 years old.  My first thought about turning thirty was that maybe doctors will finally stop saying “you’re too young to have had all of these problems.” I’ve officially hit the age where my medical history is now acceptable vs. the era of the 20s, where no one that young should have endured what I’ve gone through.
            If I added up the sum of all my experiences of the last 30 years, I feel as if I could write a book.  I’ve been incredibly blessed, but I’ve also been inarguably cursed, and year 29 has been the toughest.  To celebrate this new decade, we had a low-key get together at my sister’s home, with her brother-in-law, my stepson Connor, Jackson and my husband.  While they (with the exception of Connor and Jackson, c’mon, I’m not that cool of a mom) were able to day-drink all day with their Trulys and Bud Lights, I could not. My food was prepared differently and I was unable to enjoy my sister’s famous pineapple casserole. I indulged with two mixed drinks (Vodka and tonic water are the “safest” IC alcoholic beverages) and cake with artificial coloring.  This, of course, did not come without a punishment.

            I woke up in the middle of the night in some of the worst pain of my life, barely able to move.  The day following was horrific, and while I wanted to simply enjoy one day to pretend I was normal and make Ben’s Father’s Day special, here I was again with my illness reminding me that this was not something that would be possible for me.

            30 years old is young - it means I have a lifetime ahead of me that I still have yet to experience.  I completely broke down that morning, terrified for the years ahead.  I have so much life left to live and I simply do not know how to enjoy my future years with the health conditions that I have.  I live in pain every single day.  There is not one day I wake up without it.  Since January, I have had a total of 9 days where I was operating without some type of pain.  It ranges from mild to severe/debilitating - and who knows when a flare-up will occur.  It is scary to realize that I have so many years left to live with this crippling pain every day of my life.  It makes it difficult for me to be a wife, a mother, a friend, a person.  It’s hard to enjoy even the simplest of activities when inside your body is screaming at you.  

            On Father’s Day, on Ben’s day, I broke down to him, trying to reconcile this person and condition that I have with who I want to be.  He gifted me with an IC cookbook and airpods that I’d been wanting just to cheer me up.  He’s become a pro now at shopping in the grocery store for ingredients that work for me and are specific to the IC diet.  He knows what I must avoid and what special items I am able to eat.  He has made me homemade jelly, since I can’t tolerate any jam and even made me IC-safe ranch (lord knows I’ve been missing those condiments).

            My first act on my 30th birthday was a trip to the urologist to get my bladder injection which was absolutely needed.  My nurse (who I’ve seen twice a week since April) cheerily asked me how my birthday weekend went and how I was feeling today.  I immediately burst into tears, once again trying to figure out how I can live with this every day for the rest of my life.  God bless her soul, she really is an angel (pumping your bladder full of meds twice a week can make you get to know a person) and listened to me.  I’m sure she didn’t expect the response I gave her, but she was entirely empathetic and wanted me to see my urologist sooner to see if there was anything else at all we could do to help.

            There is a procedure called a hydrodistention that’s a possibility, but it’s something I don’t want.  It’s an actual surgery on my bladder that may not guarantee relief, and even if it does, the range of relief can go from a couple of weeks to a few months, and then you have to repeat the process again.  Needless to say, I have PTSD from my ablation and don’t want to undergo any unnecessary surgery unless I have a guarantee of relief that will last.  I’ve researched the procedures and have seen so many horror stories online of patients like me who underwent this surgery and wound up being in more pain than before.  This frightens me and it’s not something I want to risk.

            On the plus side, my gastroparesis is currently in remission.  I go through these remission phases every now and then and when I do, I am grateful.  I’m still eating small meals as not to aggravate anything and there are times where I skip meals because I’m still full from the previous one, but so far, my stomach has been operating at the ideal level for me.  I know that I need to have the GPOEM surgery before the year’s end to treat it, but I am still so terrified to do anything at this point.  I finally took the step last week to speak with the surgeon who performs the surgery to begin the process of scheduling this procedure.

            I am beyond blessed to have a phenomenal primary care doctor that truly has my best interests at heart and has assisted me in managing my pain, mental health and various other conditions.  I could not explain the depth of gratitude I have for this doctor and his practice.  I am also incredibly thankful for the urology group I’m with that continues to put up with me week after week, trying to treat me the best way possible.

While Instagram and Facebook can paint a pretty picture of how things appear, I hide all the days that I’m really struggling.  No one wants to see all the dark parts and I respect that.  I appreciate the good days, where my pain is mild and I am able to be the mom and wife that I want to be.  I appreciate my support system that continues to keep me going on even the worst days and respects that some activities and basic day-to-day responsibilities are a bit more difficult for me.  I could not do anything without the ones I love supporting me and I love you all so much. 

Here’s to 30 years young and hoping that the future brings health. For now, here I am alive.

*currently listening to "Here I Am Alive" by Yellowcard

Frail State of Mind

I’ve debated returning to blogging for quite some time now.  It helps me process things and therefore, here I am again.  I refrained from posting anything during my pregnancy because, let’s be honest, no one wanted to hear about that nightmare - but I think we can all agree that the most darling little baby boy was worth every single hospital second.  Shockingly, despite the medical turmoil that has been my 29 years, pandemic aside, 2020 has been my toughest year to date (yes, this includes the 2017 three-month hospital hotel ostomy chronicles).  If I had to describe it through a song, it would undoubtedly be the 1975’s “Frail State of Mind” (now go give it a listen, proceeded by every other piece of lyrical genius they’ve produced).  Now that we’re rounding out April I feel that I’ve finally had the time to mentally digest, understand and actually talk about what has been the horror of the past 4 months.

I’ll start by saying this begins with “female” issues, so guys, if you’re here and this makes you uncomfortable, drop the scroll.  Everyone is familiar with my gastrointestinal anthology, but luckily I was blessed to have no issues with the gynecological arena.  Prior to having Jackson, I didn’t have a period for 5 years (no complaints out of me here).  Due to my multiple surgeries and health issues, it was just assumed that everything was whacked out there as well and to consider myself thankful that I didn’t have a monthly visitor.  After I had Jackson, however, I never really stopped bleeding.  My periods lasted between 15-30 days every 2 weeks and were incredibly painful.  After several months with no way to regulate it, there was only one way to remedy this - an endometrial ablation.  A simple, fast, outpatient procedure.  Burn the lining of the uterus, your periods go away, you can go back to work 2 days later.  No one has any problems, right?

I can say with 100% confidence that this procedure was by far the worst thing (medically) that has ever happened to me.

4 days after the procedure, I developed a strong, debilitating pelvic pain that continued to get worse.  My OB did an ultrasound and thought everything appeared fine.  Two weeks later, I was in the ER as a result of the pain.  I was quickly dismissed after a CT scan that the technician said was “unremarkable.”  I was unable to work, unable to take care of my son, completely incapable of functioning as a normal human being and spiraling into depression, going back on antidepressants for the first time in over a year.  Three weeks later, I was back in my OB’s office, begging for an answer - something was clearly wrong and I just wanted it fixed.  She referred me to a high-risk OBGYN who reviewed my CT scan once more and said the problem was my uterus and it had to go; finally, someone was listening.

I finally saw a light at the end of the tunnel, despite how badly I was hurting.  A week later, things would come shattering down, as I experienced a bowel obstruction.  Let me state for the record that a bowel obstruction is one of the single most painful events that anyone can experience (and I feel like I’ve been through it all at this point).  Off to the hospital again, I was admitted, put on an NG tube (and complimented by the nurse who said she had never had a patient take an NG tube as well as I had - you just get used to those horrible things and are ready for relief), put into a drug induced coma for the next few days while trying to balance my pelvic and intestinal pain.  Watching each new doctor come in and visit me with that shocked “Wow, you’re only 29 with this medical history?” face and statement come in until I was better. 

For the first time in my life, I stopped talking to God.  I was angry.  I was done.  I had (and frankly, still have) no clue why I had been chosen to undergo such astronomical pain so many times in my life and still be expected to function.  I don’t mean to wallow in self-pity here, but I’ve been through a lot - and I was sick of it.  I quit praying, I stopped asking people to pray for me and I said I was done talking to the man upstairs - this was it, I’d had it.  I was at the lowest point I had ever been in my life, feeling like a complete failure as a mother, wife and overall human being.  The hardest part was mentally grasping that I could not physically be a parent to my child in my current condition and it could not have possibly made me feel worse.  

Two months after my ablation, I had my hysterectomy.  Sure enough, the surgeon discovered what was (what we thought would be the end) the result of the pain - a fibroid had exploded in my uterus, causing my uterus to rot inside of my body.  Doesn’t that make you feel attractive?  Surgery pain is surgery pain, it’ll be over soon right? 

9 days post op, I woke up feeling amazing, as if I didn’t even have surgery.  By that afternoon, however, my pelvic pain had returned.  The next day, I was bedridden again.  Down I went, in one of the lowest points in my life.  My father (always the man, my best friend) came up to help out with me as my husband was taking care of our son and balancing working from home.  After another CT scan that did not show anything apparently wrong, my surgeon was stumped and said I would have to wait it out.  I couldn’t do that - this did not make sense.  I was crying non-stop from the pain and could barely walk.  Looking at a diagram of the body, I *quite literally*  just saw where the bladder was located and asked if that could potentially be the problem.  My surgeon said it was worth a shot and to follow up with a urologist that I failed to follow-up with before.

Shout-out to Athens Area Urology for getting me in for a cystoscopy (camera shot up your bladder) next-day and a consultation.  After this appointment, I received some good/bad news.

The good: I finally learned what was causing this all encompassing, debilitating pain.

The bad: I have interstitial cystitis.

Out of all of my conditions and health problems, I have to say this is my least favorite one.  It appears the ablation also permanently damaged my bladder and I, yet again, have another chronic condition to add to the list. The amount of pain this causes is astronomical - when you go through a flare, you cannot function.  I was so grateful to have an answer, but mentally did not know how to cope with the news.  I have to thank my husband, my parents and my sister for, quite literally, saving my life after finding this out.

I’m now on an army of new medicines and on an incredibly restrictive diet to help control flares.  I thought my diet was limited before, but just take a google at IC diet - think you can have anything remotely flavorful?  WRONG.  I’ve had to give up coffee and wine, and if you know me, my bloodstream is 50% Starbucks and 50% Pinot Grigio, so this has been the biggest struggle.  I will be getting bladder injections 1-2x weekly for the rest of my life to help treat the pain and control flares, and let me tell you - a bladder injection is truly just as glamorous as it sounds.  I’m on new mental health meds to help my brain cope with this news, because it’s been tough and I’ve struggled like I’ve never struggled before.

My biggest concern in all of this has been - what kind of mother will I be?  What kind of mother will all of this make me?  Sometimes too much movement triggers even worse pain.  Will I be the mom that can throw a basketball with her son, or will I have to sit on the sidelines, or worse, stay home and miss sporting events, school functions and the like because I’m too sick.  How many more hospitalizations and surgeries do I have in my future?  I’ve recently been approved for a new surgery to treat my gastroparesis - it’s supposed to be routine, but needless to say, I’ve developed a bit of PTSD from “routine” procedures.   How much of Jackson’s life will I miss because of my health?

Despite everything, despite the lowest of my low, I know I have a sweet, precious little boy that I have to live for.  I cannot imagine missing a single second of his life or being there for him in whatever capacity I’m able to be there.  I have never experienced the type of love that has come from my love for him, and whatever happens to me, I have to continue to fight for him.  Mentally - this takes a lot of work.  It takes a lot of support from those that care the most about me and who have been here for me through the worst of it (I’m not good when I’m bad) and some strength on my part as well.  

As for the God part, I’m working on it.  I’ve started praying for others, because the world is a scary place full of people I care about.  I hope that it’s all working.   As for myself, I haven’t said a prayer yet - maybe we’ll get there one day, but I’m still mending that relationship.  

For now, I’m grateful that I’m healing this frail state of mind.

Top 5 Ostomy Fails

I officially became an Ostomate on February 28, 2017.  Look at this happiness.  This girl who clearly knows everything about her ileostomy and how to control it.  She looks flawless:

Clearly all days are glorious.  They are obviously full of sunshine and rainbows and without a doubt I can stealthily sport Debbie underneath my clothing without anyone batting an eye.  Because I'm a pro.  I got this.  I can work this bag.  I can do it all. '

WRONG.  Most days are spent like this. With the "oh shite, I think I screwed up" face:

In the interest of transparency, I would like to list my top 5 ostomy bag fails since Deborah and I have come to know each other.  I would like to warn you, this post is not for the faint of heart.  If you have issues with a certain "#2," I suggest you scroll up, select the "back" button, and return to whatever previous activity you were involved with before you happened to stumble upon my stool-centered blog.

#5 - The First Leak

They say when you return home all of you ostomy knowledge goes out the window and your first bag change will be a debacle.   Well, let me tell you - it was a fiasco.  As my husband and I were relaxing watching our 478th episode of Shark Tank, I felt a wetness underneath my shirt.  As I checked, I knew - MY FIRST LEAK!  Panic ensued.  We ran to the bathroom.  Puppy pads were thrown to the floor.  I stripped down to nothing, I ripped off my bag.  We grabbed a trash bag and I stood next to it and my stoma went nuts as I went "#2" on the puppy pads like my little Chiweenie, Scooby, would.  Our bag changing knowledge was quickly forgotten due to the crisis at hand, but thanks to a quick phone call to a good friend, we were able to successfully re-bag myself.  However, we were unable erase the images in our minds of my stoma and me pooping on the puppy pads like my little Scooby.

#4 - BAG DOWN

It had been a particular rough day in the hospital where seemingly everything, and I mean everything, had gone wrong.   My nurse and I were joking about the catastrophes and she stated "at least things can't get any worse."  As I walked toward the bathroom I agreed with her and said, "yes, that's true - they definitely can't get any worse."  The second I finished my sentence, the clip on my bag came loose, and the contents of my bag spilled on the entire floor, covering myself in literal shit.

Things definitely got worse.

#3 - THE LEAK TO END ALL LEAKS

I was waiting to have another test run at the hospital as transport arrived to pick me up.  I arose from my hospital bed to find that yes, I had another leak. Unfortunately, the hospital was short on bags my size, so it was the third leak of the day.  Paste was hardened to my area, so I had to be put in the shower immediately to be washed off and have the paste picked off immediately.  

The hospital was short staffed, so it left me with no other option but to have my nurse and my dad take the paste off with tweezers while I was in the shower.  As if I wasn't humiliated enough, I had to be in my birthday suit in front of my father for the first time since I was a toddler. I stood there, naked, helpless, and downright ashamed as they picked away at my paste and I prayed for the night to end.

A correct size bag was eventually put on.  My dignity was never found.

#2 - THE INTESTINE CRISIS OF 2017

When you're in the hospital, they want you to measure your output.  I felt my bag get quite full with what felt to be a large "turd" inside.  I asked my dad to hold the can for me to empty my bag.  We did, but the large "turd" didn't budge.  We poked, yanked, tried to "break up" the object, but it wouldn't move a bit.  We decided to call a nurse.  The nurse had me lay back and put a towel around me as she didn't want to make a mess.  I thought it was a bit odd, but I went with it.  

She pulled my bag off and what I saw made me want to pass out.

"Your intestines have decided to come out," stated the nurse calmly, "I better call the doctor."

W.T.F. Full on panic attack.  I hyperventilated. I cried. I screamed. I squeezed by dad's hand. I almost broke it. I lost my mind.

MY INTESTINES ARE COMING THROUGH MY STOMA??!?! WHO DOES THIS HAPPEN TO?!?!  

My dad is calling everyone. I'm crying and crying as he holds my hand saying it's okay.  Then he says it "Looks just like a 'Peter'."  Nice saying it looks like I have a dick coming out of my stomach, Dad.

They give me ativan to calm me down because I continue to lose it.  They eventually bring in the surgical team to push it all back in.  It takes a while, it hurts, but it all makes it.

And yes, I'm still suffering from the disaster.

#1 - THE PANERA INCIDENT

I have saved the best for last.  Ah, the Panera Incident.  After a month in the hospital, it was finally time - I was being released!  I was ecstatic and couldn't wait to leave my jail cell.  I was dying for Panera, so my husband and I decided that is where we would eat upon leaving the prison.  When we got to Panera, I realized that my bag was completely full.  I gave my husband my cell phone and wallet and told him I would be right back as I needed to empty my back quickly before we ate.  I went into a small bathroom stall instead of the large stall, which was my first mistake.  I should have known I condemned myself at that very moment.  I unclipped my bag, started to unroll the front, began to move it toward the toilet for emptying when my hands got loose in the small stall and slipped.  

As my hands slipped.. the contents of the bag started to slip as well.. they quickly exited the bag... not into the toilet but...

...all into the inside of my pants.

Yes, my entire ostomy bag, full to the brim, softened stool, emptied into my pants.

You could say I shit my pants.

Since I had no phone as I had given it to my husband, I was SOL.

I began scooping everything out as best I could.  This process took quite a while.

Finally, as I felt I had enough out of my pants to get my husband, I did.  He was able to get me a change of clothes from the car until could get home.

Broke that ostomy bag in real quick.




On that note, I'll close out this blog post.  Peace, love and blessings.