Tummy Trouble

My regular reader is aware of my battle with my stomach, but a newcomer may not be, so here’s a short recap: about four years ago I was diagnosed with gastroparesis, a stomach disorder that prevents proper digestion.  It was described to me as such: every person has a blender in their stomach, and my blender had rusty blades.  As time went on, rusty blades turned into no blades.  It made for uncomfortable situations, like not being able to eat when hungry or feeling nauseous and bloated in the mornings, and it made for terrible situations, like landing in the ER because I was vomiting blood and had stabbing abdominal pains.  I was on a variety of medications for years, all of which proved useless.  Then they started doing regular dilation of my pyloric sphincter (the muscle that controls food leaving the stomach.)  This provided a month or two of temporary relief, and then it was back to the ER.  They are thinking I might have something called pyloric stenosis, which is a disease that is common in baby boys, not 36-year-old women. 

That brings us up to now.  Yesterday, I had my regular procedure with the added benefit of Botox injections to my pyloric muscles.  This is supposed to cause the muscles to relax and smoothen so as to transport food easier.  I read up a little on it, and results vary.  Some studies say it’s beneficial, some say they found no results.  All agree it can’t hurt to try, and I am in that frame of thought right now.  I’ve been living with this for years and any opportunity for relief is one I am willing to take. 

If this doesn’t work and I end up back in the hospital, then I will be talking to my doctor about surgical options out of town.  She mentioned some doctors in Cleveland that may be able to help.  I don’t want it to come to that, but I’m not going to go though the rest of my life like I have the past four years.  It has been terrible.  I haven’t been able to hold a steady job.  It has wreaked havoc on my depression.  The medical bills are out of control. 

But I’ll be damned if I let any of that get me down while I am trying to heal and improve my health.  I intend to do whatever I can to beat this ridiculous pain-in-the-ass disease and get back to the life it has stolen from me.  Today, I am hopeful.  I’m not hungry yet, but I’m drinking coffee again, which was a huge turn-off just a few days ago.  I am sitting in my office with the sun streaming though the window and I am content in knowing that there is a possibility, however small, that I might be well.

Pancreatic Revolution

Circumstances beyond my control, I awoke this morning to find that my blogs were trapped inside my computer, which would not work.  This is a fixable problem that would barely register in my life were it not Thursday, and therefore, blog update day.  I wrote a piece about my Fitbit.  It was all ready to go.  Yet here I sit at my fathers’ desk with his weird keyboard trying to peck out something, anything…

It’s been a bad week.  I won’t go into much detail but the main problem for me is that I have been very sick.  I’ve been to the ER several times, and subsequently released to go forth and get sick again.  Tomorrow I am having a procedure that will hopefully alleviate some of my tummy troubles, but they are also looking at the possibility that my pancreas is playing a role.

This guy, again.

The first time my pancreas revolted I was 16 and failing all my classes.  I was sleeping though them, then coming home and sleeping when I should have been doing homework, so of course I was failing.  My teachers mostly wrote me off as a screwup that year, save two.  One showed great concern that I was not myself, certain that the screwup label was ill-advised.  Another, who had taught me for three years at this point, insisted something was medically wrong.  So, my mother came home and tested my blood sugar, and sure enough, I had a whopping case of diabetes.

I spent that night in the ER with my parents and my friend Chelsea, who was good enough to come with me so that I didn’t have a total panic attack.  She stayed all night and even went to school the next morning to tell my friends I was ok.  It meant a lot to me then, and means a lot to me now.  But back to my pancreas…

Anyway, the docs decide that while it’s producing insulin, it’s either not enough or the insulin is not doing its job.  Therefore, I was diagnosed with Type 2 diabetes, not the dreaded Type 1 my mother was always certain I would acquire.  This was November, 1999.  20 years ago.

20 years!  And now it’s making its reunion tour by messing with my stomach?  Unacceptable.  Doc wants to put me on pancreatic enzymes.  I don’t know what that is or what it does, but I just cannot believe that we are still messing around with this piece of crap organ.

I mean, they might as well take the damn thing.  What has it ever done for me except make me sick?  I already take two shots a day for my diabetes, so it’s like I have Type 1 anyway.  Can one get their pancreas removed?  Do they do transplants?  Is this all just wishful thinking?

I’ve been sick since sixteen and my body continues to fail me even twenty years later.  My mother likes to talk about how strong I am for facing these battles, both physical and mental, and I appreciate her sentiment but the truth is, I don’t have a choice.  There is nothing but waking up each day praying that I feel well enough to live that day out loud.  Sometimes I don’t.  Sometimes, like yesterday, I know I will be in the ER the second I open my eyes.  The point is that I don’t have a choice to be strong or not.  It’s either that or give up, and I’m not very good at throwing in the towel.  So you won’t find surrender here, and you can call me strong if you want to, and maybe choosing to soldier on each day is strength, but I’ll be damned if I give up.  I’m not a quitter, I’m a problem solver.

Personal Triumphs

I was sitting on the sofa and thinking about what to do with my day when it occurred to me that it was Monday, which means blog day.  At first, I panicked because I didn’t have a topic, but then I realized that yesterday I hit a milestone.  I finished my chapbook.

I started thinking about this little lady around Easter, when I realized that several of my poems have to do with living with chronic illnesses.  I often write about my depression and anxiety, and have a few poems about my diabetes and gastroparesis, too.  So, I assembled all the poems I had in regards to chronic illness, wrote a few more, edited and organized them, and now I officially have a manuscript. 

I don’t know what to do with it, of course.  I have given it to my mother, Aunt Mary, and Sahar, and am looking for others to give me feedback.  Then it’s off to find a publisher, which means it’s time to take myself to school at YouTube University and figure out how one even does that.  I did a quick Google search while waiting on Mark yesterday and found one press for which my manuscript fits all the criteria, but I just missed their reading period.  This indicates to me that finding somewhere to send it might be a little trickier than finding places to send singular poems. 

For now, though, I’m unconcerned.  I’m very excited that I even finished it, as it has been some time since I have seen a project come to fruition.  The fact that it’s about the things that have held me back from my literary career only pleases me more.  It’s triumphant.

The last piece I finished was a play I wrote that, looking back, is garbage.  Yes, I have said many times that I think everything I write is garbage, and I am my own worst critic. This is so true-I tell myself things about my writing other people would never dare.  I think about that play, and often want to rewrite it, working out the kinks and changing things both big and small.  That play was written nearly ten years ago.  When I finished it, I felt great joy and relief.  That feeling returned yesterday morning, as I put the finishing touches on my manuscript. 

It was done.  I had completed something for the first time in a really long time, and I would be lying if I said I wasn’t pleased with myself.  Proud, mostly, that I was able to take something that has affected me for so long, and put it into words.  Then put those words into something someone else could read and relate to.  That’s all I want, as a writer.  For someone to read my words and see themselves.

So today I celebrate a little, because I did something I always wanted to do.  Ever since I was a kid, I have loved poetry, reading it and especially writing it.  To have my poems ready to meet the world is a beautiful thing.  What’s more…I don’t think it’s garbage, guys.  I think it’s kind of good, actually.  Which is, in it’s own way, terrifying. 

My biggest hope is publication, of course.  Still, if it doesn’t happen that way, I am proud of myself for creating something that I can share with others.  I feel like poetry takes a certain level of bravery, and this collection certainly did.  I am openly sharing my experiences with illness, and that is scary.  We, as people, don’t like to point out our weaknesses.  What we need to do is embrace them, and learn from them.  I may be sick, but I’m still strong.

That’s all for today.  I’m off to stare at my novel for a bit, as she has just moved off the backburner and into focus.  That’s a flippin’ mess, to be honest.  It’s more a large outline than a half finished novel, and it needs tons of reworking and additions.  And I’m stuck on a section right now, so that’s fun.  Hence, the staring instead of writing.  Sigh.

Happy Monday, friend.  Go do something brave.

Eyes Wide Open

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Photo by Victor Freitas on Pexels.com

As I write, it is not Monday, because I won’t be able to write on Monday.  I will instead head off to my second eye surgery.

I have mentioned before how the worst part of having diabetes is the side effects.  They’re what get you in the end.  I suffer from two major side effects, gastroparesis and retinopathy.  So of course, now that my tummy has finally settled down for a while, my eye has decided to revolt.

Typically, I get shots of Avastin every few months in my eye, which is usually terrifying to anyone I mention it to.  Honestly it isn’t that bad.  You don’t have many nerve receptors in your eyeball, so it’s more of an uncomfortable prick than anything else.  The real annoyance is the speculum that holds your eye open, and the stuff they use to sterilize it.  Sometimes when I get the shots, I can even see the little bubbles of medicine as it’s injected, which is kind of cool.

I don’t know the technical name for my surgery on Monday but essentially, they are going to use a tiny vacuum to remove the blood that has taken up residence and then use a laser to blast away all the bad cells that create the blood.  I should be able to see better afterwards, no longer having to deal with the floaters I have become accustomed to.  I’m a little nervous.  I had laser in my other eye several years ago and ended up with scar tissue that got stuck on my retina and detached it.  That was a complicated surgery with a terrible recovery time, as I had to lie face down for a week afterwards.  This should have an easy recovery, and I am significantly more excited about this surgery than the last.  Assuming, of course, I don’t cuss out my doctor.

It would seem that when I am given twilight anesthesia, I have a reaction.  No one will tell me what I did but the nurse said I “got a little crazy,” and my doctor said I “wasn’t very happy” with him.  Both were said to me in tones implying that knowing what I said and did would embarrass me.  Which means I am going to be full-on PASSED OUT for this surgery.

Makes me wonder what my behavior for all those endoscopies has been.  But I digress…

I am most excited to wake up and see without the slight haze of blood I now look through.  Sometimes it’s like looking at life through an Instagram filter.  Sometimes it’s like looking through a lava lamp.  It’s not fun; it inconveniences me terribly.  Somedays I can’t drive, especially at night.  Sometimes it’s hard to read, which has really been annoying because I have like fifteen books waiting to be consumed.

In conclusion, I am looking forward to the surgery with only a minor amount of anxiety, scared that I will end up with scar tissue again.  However, this time I will know what it is and get it handled before it rips anything out.  Mostly I am excited to read those fifteen books, to drive at night, and to see a truly blue sky with both eyes open.  That’s worth any amount of anxiety, in my opinion.


Edit:  None of this happened today.  I ended up back in the hospital with a stomach thing instead.  Such is the way my cards fall. The future will be bright though, as I am sure to reschedule soon.  Really looking forward to those summer skies.

Monday, Wednesday, Whatever.

I impose a Monday deadline on myself because when I was younger, I never did my homework on time.  I spent a great many afternoons in 6th grade sitting in detention and finishing my science labs.  It only got worse as I got older.  It wasn’t until my fateful year at college that I learned to work with deadlines, and I try to impose them on myself to keep my life in order.  I am a procrastinator from way back, and it’s difficult to change one’s stripes, so I am always trying.  Thus, I imposed a deadline for my blog.  Every Monday, I will post something, whether profound or not, just something so I can hold myself accountable.  However, deadlines are made to be broken.

I have written this before.  I have also written the same excuse for this broken deadline, because it is always the same excuse…it is difficult to write with an IV in one’s arm, or as the case was Monday, one’s foot.

I don’t like to write about getting sick because I have a lot of emotions attached to it, mostly anger and rage.  Mostly failure.  Like, I know I did nothing to end up in the hospital on Monday morning.  I took my pills.  I followed my diet.  And yet my stomach rebelled, as it is wont to do, and landed me back at good old Mercy hospital.

First, there’s the waiting room, which has at best lasted thirty seconds and at worst lasted eight hours.  We were somewhere in the middle on this one.  Then there’s triage, where they try to find a vein, fail miserably, give up and put me in a room.  They send another nurse, the “vein whisperer,” if you will, and she pulls out all the stops.  Still, nothing, and they go to the foot.  Finally, they’re taking blood.  Finally, I can get some meds.  Compazine and Zofran and Ativan and Morphine…and then there is sleep.

I wake up and they tell me I can’t leave, my blood sugar is too high, because of course diabetes wants to come out and play, too.  They will keep me overnight for observation, which sounds simple but means I probably won’t be out until at least supper time.  I wake up in the night in pain, more morphine; I wake up nauseated, more Zofran.  Someone brings a breakfast I don’t touch.  Someone takes my blood.  Someone else brings fresh water, and that tastes remarkable.  My blood sugar is normal again, and if I eat, they’ll take out my IV.  I do as I’m told between sleeps.

Eventually a doctor comes around the same time as my lunch tray and tells me I can go home if I eat soup a little soupier than that they just gave me.  I wait longer for food.  I eat, I don’t throw up, so I call my nurse and tell her I want to go home.  I wait.  Three hours later, she takes the IV out of my foot, tests my blood sugar, and sends me on my way.

This is a short visit.  This isn’t the nine days I spent in June, and it doesn’t feel like October when I went back three times in a week.  This is just one day that throws me off by a century.  I wake up this morning with pain in my stomach and a faulty gag reflex and run to the bathroom, terrified that we will be going back for round two.  I take my meds and pray they stay down.  I eat a cracker.  I wait.  Eventually the pain subsides and I don’t feel the urge to puke, so I eat another cracker.  I wait.

There’s a lot of waiting.

Now, I sit at my desk which is downright buried under stuff, because of course the house looks like four child-sized tornados went through it.  Cleanup is also the thing I do on Mondays, right after posting my blog, and it is the thing I will be doing this Wednesday, despite my body being tired from retching and my brain foggy from medications.  I have to do it though, because I need that normalcy in my life.  I need that to hold onto when I lose a day, or three, to a broken gut.

Hey Kid: Check Your Sugar

I want to write about the hospital.  The problem is that it’s not very clear.  I have to be reminded of things like the emergency room, where I sat huddled between a wall and Mark trying to stop shaking.  I vaguely remember the part where they put me in a room, and I finally got to lie down under a blanket.  I forget the name of the first nurse that took care of me.

Sometime around Wednesday life became a little clearer, but I was in the bubble, baby.  If you’ve ever stayed at a hospital for an extended period of time, you may understand what I’m talking about.   The bubble keeps from you what’s going on outside the hospital door.  Now, it also could be that I impose this upon myself.  I never watch television when I’m sick-I find it exhausting.  All I do is sleep.  I don’t care for visitors other than my parents and husband.  You do not need to visit my sick self.  So, this bubble is blown, and I am sucked inside to a place of isolation.  I hear other people watch the news and Wheel of Fortune and such, and the lady across the hall had a full-on birthday party one night. I cannot suffer any of that when I am already suffering, so I slip to this place of seclusion.  When I came out of it several days later, I felt wrong, noticing the passing of time in a way that resembles long term jet lag combined with that day after daylight savings feel.  It takes several days to get myself back on track.

This isn’t my first rodeo, I should mention.  This was just the longest.  I personally believe this was due to a nurse or doc med error in which I was not receiving my daily medications, and thus it took much longer for me to get well.  But I don’t know.  What I do know is that gastroparesis is hell.

Mom and I were playing a fun little game for diabetics where we compared which complications were better than others.  Like, gastroparesis sucks, but would you rather lose a leg?  Or would you rather have colitis, or go blind?  It was a lovely way to pass the time.

I hate having gastroparesis, but yeah, when you look at it that way, it’s a different story.  Often, I am recovered quickly and quietly, and while it may inconvenience me a lot, most days are good ones.  Also, I know for a fact that they eye probs are worse than the gut probs.  I’ve been on both those roads and I will take the occasional inability to digest anything over ever having my eyeball operated on again.

I hate having diabetes.  I mean, I don’t think there’s anyone out there enjoying it.  The worst part is not the insulin or the doctors, it’s the side effects.  Major issues on their own become degraded to side effects of diabetes.  Everything that’s wrong with me is because of diabetes…despite my diabetes being well-controlled.  But it wasn’t always, and these things grow like a cancer inside you until one day when they get together and decided “hey, this week, let’s stop processing food and also maybe bleed out that left eye a bit.”  If I had someone who wasn’t my mother tell me at 16 when I was diagnosed that this was how things were going to roll, I would have been much more careful during my  twenties instead of consuming mass quantities of tequila and cigarettes.  But I digress…

I started writing about the hospital bubble and ended up in deep life regrets.  A wrong turn has been made somewhere.

I guess the best I can say coming out of this bubble is that I hate being in it, and I am trying so hard to life my life in a healthier way so that I can avoid it in the future.  And also, I wish I hadn’t been a fucking idiot when I was younger.

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