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.