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The Loneliness of Chronic Illness

No man is an island... unless that man is chronically ill.  Chronic illness makes islands of all its victims.  Y'know that feeling eve...

Wednesday, March 6, 2019

The Loneliness of Chronic Illness

No man is an island... unless that man is chronically ill.  Chronic illness makes islands of all its victims. 

Y'know that feeling everyone has as a teenager? That "no one understands me" feeling.  Take that and multiply it by a million and that's chronic illness.  At least when dealing with teenagers, people have a point of reference, since they were once teenaged themselves.  The same can't be said about chronic illness.  With chronic illness you don't get it 'til you literally get it.

I'm going to be honest here, I don't know how to cope with the loneliness that accompanies chronic illness.  It is so gut-wrenching and all-encompassing.  It's not just the literal state of being alone, either.  Along with the physical solitude comes the mental.  I could be in a room full of people and still feel utterly and hopelessly alone, because everyone in the room is able to function so seamlessly while I'm trapped in a cage of my unreliable body's making. 

Despite our most valiant efforts, time will not stand still for us; so our friends and family move on without us.  And we've got no choice but to watch them go.  Those closest to us often claim to understand.  They see us being left behind and they feel badly for us.  Some grasp at straws to try to empathize, but it's impossible to grasp the totality of the loneliness without truly being in our shoes.  There's no way to fully comprehend the utter devastation of chronic illness.  It destroys everything in its wake, and we're left shakily holding on to the memory of who we once were, the friends and family we once had, the life we once led. We grieve the potential we lost.

For someone who's constantly treading emotional water in an attempt not to drown in my sorrows, I hold myself together quite well for the most part.  I put on the bravest of faces and act like it's no big deal.  It's fine my family is going out of town without me.  I'm happy for my friends who are surpassing life's biggest milestones.  I joke about how my life is in shambles, all my plans fall through, I can't do the things I love anymore.  I say "thank God I'm an introvert because I spend 90% of my time alone" and "isn't it funny how before we moved here, I complained how much I despised this house, and now I spend the most time here out of anyone." I must laugh or I will cry, and if I start crying I don't know when or if I'll ever stop.

There is some hope, however, because there are other chronically ill people out there.  Other lonely people whose experiences resemble my own.  I have not met any in real life, but the internet is a wonderful thing that has allowed me to forge deep, meaningful friendships with people who truly do get it.  People who know how I feel because they have been through it themselves.  Sometimes it's just nice to have someone to be lonely with.

Friday, March 1, 2019

My Gastric Pacemaker Experience

Hey I'm Kayla and March 1, 2018, I received my Gastric Pacemaker/Neurostimulator, so it seems only fitting that I write a post today, in celebration of it's first birthday.

Back in the middle of 2017, I began to lose a ton of weight very very quickly.  Within 5 months, I had lost 1/4th of my body weight.  I was unable to eat without extreme pain or nausea, and I had gotten to the point where I could barely even stomach liquids.  Fortunately, I was able to get proper testing relatively quickly and I was diagnosed with Gastroparesis, which translates to stomach paralysis, for those who don't know.  Basically, the stomach is a muscle that contracts/pumps in order to move food through, and my stomach muscle stopped pumping.  I ended up being referred to a surgeon in the Gastroparesis Institute at USC, and he laid out my options.  I had the option to start treatment less aggressively (ie Botox injections in my stomach, which have a very low success rate), or I could look at my surgical options which included the Gastric Pacer and/or a pyloroplasty (permanently opening up the hole that the food empties through from the stomach to the duodenum).  Due to the rate I was losing weight, I knew that if I attempted Botox and it didn't work, I would end up needing a feeding tube, which was something that I personally wanted to avoid at all costs.  My doctor had told me that he had recently been performing Gastric Pacemaker implantations AND pyloroplasties in the same surgery on some patients, and he had been seeing better results from them than from patients who received only one or the other.  Based on my case (and the fact that I'd rather have one surgery than multiple), we decided to do the Gastric Pacemaker and the pyloroplasty together.  I have never once regretted this decision.

The surgery took a total of 4 hours, and I was in the hospital for 2 days and 2 nights total.  For some, it would have been an outpatient procedure, but due to my ever-growing list of chronic illnesses, we decided it'd be best for me to at least stay for one night.  Those first 48 hours after surgery SUCKED. I mean holy shit the pacemaker was HEAVY (the weight of 2 golf balls) which meant it was painful as hell and super hard to get adjusted to.  Not to mention that when I get anesthesia I can't pee afterwards because my body is ridiculous so I had to beg for 2 catheters (honestly when a hospital makes you beg to pee, they're doin something wrong but I digress).  And in the hospital, I unfortunately broke my 12 year no-vomit record.  I literally hadn't barfed since I was 8 years old then some jackass gave me an anti-inflammatory that my body did NOT like and the record was gone :(

Once, I was stable and released from the hospital, recovery was easy enough.  Lots of resting and netflix, which wasn't out of the ordinary for me.  I became adjusted to the weight of the pacemaker so I don't notice it anymore.  It took about 5 months to get the settings on the pacer adjusted to where I could eat a somewhat normal amount, but I actually started gaining weight back within a month of the surgery.  One year later and I have gained 11 pounds back and am no longer underweight!  In terms of eating I have 2-4 good weeks, and then 2-4 flare weeks, which is to be expected because I still have Gastroparesis.

All in all I am beyond grateful for my pacemaker and everything it has done for me.