A Mixed Bag

So I should probably start with an update from my last post–I celebrated my one-year stomaversary on October 17th. I did not get a cake, but we were on “vacation” in my midwestern¬† hometown so we could enjoy fall weather (since it’s still hot in the south) and so I could handle some business with my parents’ estate/my inheritance. We enjoyed ourselves–I caught up with my old friends, and BG played with their kids and had a ball. We took our labrador and he enjoyed going to “puppy camp” (doggy daycare) a couple times and every morning we’d bring him scrambled eggs from breakfast (we stayed at a Staybridge Suites hotel as it allows pets and it provided breakfast, which was delicious). I enjoyed going to my old favorite restaurants to get yummy gluten-free specialties. And really, we’d love to move back there at some point because it’s a lovely town.

But there was some bad stuff too.

At the 9th hour of our 13 hour drive, I received word that my dear girlfriend had passed away of complications with her cancer. I knew she was terminal, but she had been just fine the day before and no one expected this. I was heartbroken that I didn’t get to see her one last time. I did join her husband and some friends to celebrate her life, but they were all drunk and disorderly (which is why I love them) and I had Mr. MLACS and BG with me so we didn’t stay long, as they were heading towards a collective breakdown. I didn’t make it to her official memorial and I know some of the crew found that offensive. But funerals are for the living. Jen knew I loved her. And I reached out to her husband to support him. I cried for her–she was a beautiful person.

Then, my sister was (as per usual) a giant passive-aggressive, manipulative pain-in-the-ass. She never misses an opportunity to make my life difficult and piss me off, then play the victim when I call her on her sh*t. She likes feeling like she has some power over me. It’s pathetic. And I’m sure our estate lawyer needed a drink after dealing with our quarrels last week–he will be so glad to be rid of us. I don’t envy him. We have one item left in the trust and then it will be dissolved and we won’t have to “work together” anymore as co-trustees.

And then, we took a 2hr trip to a nearby city to do fun stuff with BG in the afternoon and have dinner with a dear friend in the evening. But while we were riding the train at the zoo…

Mr. MLACS was shocked by his defibrillator.

He was sitting in the seat in front of me so I didn’t see his face, but I heard a loud crack and saw him fly back in his seat–I knew instantly that he’d been shocked…but I thought it was static electricity or a loose wire on the train…it didn’t even occur to me it was his ICD (pacemaker/defibrillator device implanted on his heart). He was in shock but he didn’t lose consciousness. I figured out what had happened and a wave of panic started in the pit of my stomach but BG was right next to me so I couldn’t react. I stayed eerily calm (which is how I am in these situations–I become automated). No one else knew anything was wrong and since Mr. MLACS was conscious I didn’t feel the need to call for help–I mean what could anyone do? I didn’t know what to do–the cardiologist never gave me any instructions.

So I sat there in shock, rubbing his back until we got off the train. Mr. MLACS was not feeling well but he could walk. We had promised BG to get her something at the gift shop and it was about to close so we ran in there and suddenly I knew I had to call his cardiologist and figure out what to do next. So I did that, and they said take him to an emergency room to be looked at. And I had to make a choice–go directly to an ER in the city *or* drive the 2hrs back to my hometown where the hospital has his previous records from his initial heart failure and drop him at the ER and take BG back to the hotel (because ER’s are no place for children or pregnant women). So I chose option 2 and just tried to stay calm. Mr. MLACS was floored. And blaming himself–asking “What did I do wrong?” It was heartbreaking.

So luckily BG fell asleep on the ride and I didnt have to explain why we were dropping Mr. MLACS at the hospital. While he got checked out, I started googling…and now I am PISSED at his cardiologist. Because *this guy* acted like the goal was for Mr. MLACS not yo have any more episodes. But from what I read, even the youngest and healthiest individuals with an ICD are shocked *1-2 times per year on average*. Mr. MLACS has been shocked twice this year, and both times we thought it was a crisis situation and that it wasn’t supposed to happen and I blamed myself–maybe he is too stressed and he needs less expectations and responsibilities, while Mr. MLACS agonizes over what he did wrong.

But the truth is, that his heart randomly malfunctions. The ER found nothing in his bloodwork. Nothing in his EKG. Nothing in his x-ray. His heartrate was perfectly normal (he was sitting peacefully on the train) and for no apparent reason he went into V-fib (a dangerous arrythmia). His heartrate went from 60bpm to 324bpm in an instant, his ICD device shocked him once on the lowest setting, and his heartrate returned to 60bpm as if nothing had even happened.

There was nothing we could do to prevent it. There is nothing we can do to stop it from happening again at this point. Mr. MLACS is dilligently losing weight so he can qualify for a surgery that will try to pinpoint the part of his heart that malfunctions to cause the arrythmia and have it ablazed (burnt so it quits wreaking havoc). But there are no guarantees.

I take solace in statistics–he is statistically likely to survive 10 more years. He could live decades–he’s young and most of the people with ICD’s are 60+ years old, so they skew the statistics. But I hate that we have to live in fear of the next “episode”. I hate how much pain/frustration/anxiety/guilt it causes Mr. MLACS. I hate that I need to teach BG how to dial 911 as soon as possible. I hate that I worry when he is alone with her or when he puts her on his shoulders–that she could be traumatized by witnessing an event or hurt because he fell while carrying her. I hate that I worry about Mr. MLACS driving and that I really don’t want him driving our girls–could I ever forgive myself if I allowed it and something happened to my babies while he was driving?

This is a heavy burden. All this fear.

But we have to keep living. We can’t let fear dictate our lives. Yes, we have to be dilligent and cautious, but we don’t have to be consumed by fear.

So I exhale and keep going.

XOXO,

MLACS

 

 

 

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The Anniversary

October 4th (yesterday) was the 1 year anniversary of Mr. MLACS’s sudden cardiac arrest (SCA).

In the weeks leading up to this anniversary, I have been suffering from PTSD. A feeling something bad is about to happen would creep up on me–anxiety–around the time he was due to be home from work (which is when the SCA happened–as he was leaving work). Things trigger me…like when I hear the creepy twilight zone-esque “hold” music that I had to listen to while on the line when Mr. MLACS was in the hospital–my PCP doc and BG’s Pediatrician are part of that network and I have to listen to it when I call to make appointments. Seeing an ambulance with their lights/sirens on. Seeing a fire truck. Driving the route I took to the hospital he was transferred to, thinking he wasn’t going to make it because he looked and smelled like a corpse.

I remember how heartbroken BG and our labrador were, when he wasn’t coming home and they knew something was wrong–it tore me apart.

I was already debilitated and awaiting my total colectomy surgery. I was *desperately* ill. And I had no choice but to suck it up, pop more prednisone to stay alive, and guzzle gallons of pedialyte because I couldn’t eat and I just had to stay hydrated enough to avoid being admitted. There’s so much more but I just can’t so I’ll leave it at this…

It was surreal. It was terrifying. I remember EVERY MINUTE of it, seared into my soul.

Mr. MLACS remembers NOTHING!

He is blissfully ignorant.

While he was the one in the hospital bed, I was the one living this nightmare.

I am the one living with PTSD.

I am the one living in fear of it happening again.

I’ve done EFT tapping. And yesterday morning I established care with a new therapist. I’m trying to take care of myself and work through it. It’s HARD work. It’s time consuming. It’s draining.

But lucky Mr. MLACS doesn’t have any of this baggage.

In an effort to mark the occassion, I called up the local fire department that is largely credited with saving his life through impassioned CPR to arrange to bring them dinner and celebrate on the anniversary (Mr. MLACS is 6’6″ and at the time weighed every bit of 500lbs so CPR on him was no small feat). I cooked 3 big pots of chili and 2 large pans of cornbread, and brought store-bought cookies (I intended to bake cookies but I’m not super woman so something had to give).

And apparently, Mr. MLACS’s work bought him a cake and celebrated with him there, too.

And I’m resentful…

Because Mr. MLACS didn’t suffer the way I did.

He has a scar on his chest from the pacemaker and has been tasked with losing weight–which I likewise have been very invested and supportive of his weightloss. I¬†go to every Cardiologist appointment. I hooked him up with a coach. I check on him to make sure he’s using his C-pap mask.

I. WORRY. ALL. THE. TIME.

Every morning lately I wake up before him and wonder if he’s still alive.

And he DOESN’T worry about me. And even when I was REALLY sick he never worried about me the way I worry about him.

I have BATTLED chronic illness for FOURTEEN f*cking years. I have always FOUGHT to stay healthy and worked really hard and sacrificed to be as well as I could be.

Mr. MLACS was glutton–he was morbidly obese and wouldn’t DO ANYTHING about it. He was belligerent and fought me tooth-and-nail when I tried to help him. And just before his cardiac arrest he was LYING to me and smoking cigarrettes at work behind my back and guzzling energy drinks–as a HEART PATIENT who also has VEINOUS INSUFFICIENCY. He Goddamn well knew better and he didn’t CARE enough about our family to DO BETTER at that time.

But I forgave him. I supported him. His ass couldn’t drive for A YEAR so I picked him up from work every day and even now I always drive our family places–which is fine…

But…

WHERE IS MY F*CKING CAKE???

My 1 year “stomaversary” is coming up (Oct. 17th I had my colectomy) and I 100% guarantee Mr. MLACS hasn’t done SH*T about it.

And I really wasn’t trippin’ until last night when I was at the fire station and all these guys were celebrating him with the dinner I planned and made and I felt sort of…invisible.

And it hurt.

Because I’m the one who was crying over him and fighting to keep sh*t together while lay peacefully in that hospital bed.

I’m the one who’s been fighting chronic illness and trying my best for 14 years, and through no fault of my own I ended up with an ostomy.

He did everything wrong, had a cardiac arrest, and by the grace of God he survived. For the past year–ONE year–he has been taking his meds and eating better. Getting “atta boys” for every pound he’s lost.

I’ve been doing that for FOURTEEN YEARS. With nobody cheering me on.

So where is MY cake???????

I have a feeling that if I want a cake, I’m gonna have to bake my own cake. Just like every-f*cking-thing else.

And mostly, I don’t mind. I do what I want. I want something, I do it.

But it’s been a hard f*cking year.

I dealt with Mr. MLACS collapsingo pplppl/rehabbing.

I dealt with my colectomy and struggled to regain my health.

My dad died.

I have been fighting with my sister over the estate.

My Grandma died.

And now I’m pregnant, and it has been difficult.

And I’m lonely.

And…I’d like someone to recognize what I’ve been through. How hard I’ve fought–for Mr. MLACS and for the sake of our family. And how little I’ve asked of anyone.

He hasn’t brought me flowers (except for anniversary). Taken me shopping. Ordered me anything off amazon. Planned a date (he could hire a sitter). I would love some kind of chivalrous surprise. He used to do that stuff every once in a while. Now I buy my own presents. When I mentioned I want an iRobot vacum for all the stupid pet hair, he actually asked if I wanted it as an anniversary gift. I thought he knew better than to give a woman a vacum for a gift.

I know he loves me but I’m feeling neglected. I’m feeling tapped-out. I need more attention and TLC. And he is not listening when I try to tell him (not that I say much because you’re not SUPPOSED to have to ask).

He doesn’t read my blog anymore either. He used to.

XOXO,

MLACS