It's a Long Road Ahead..

 They say don’t write when you’re crying but honestly I’ve been crying the last few days and I feel I just need to get this out.

            I truly, honestly, can’t believe that we are here again.  Physically, I thought I might be improving.  I was struggling with some interpersonal issues that only a few knew about, but physically, I thought hey – maybe we’re getting somewhere.  Maybe the demons in my mind are all I have to worry about.  I encouraged my friends to invite me out, I set up dates to get together, I was trying to do more.  Because for the first time, I felt like I was able to more.  It had been five months since I had visited a hospital and for me, that’s record timing.  I thought we were headed somewhere.
            Then my intestines started coming out…
            At first I chalked it up to a one-time thing; just a gaffe that would correct itself.  I had plans; I was going back into the office, I was being more social; I didn’t have time for this.  But it only got worse; they started coming out more and more and I became more immobile as a result.  While we planned a surgery date of August 31^st, we quickly learned that I was not going to be able to make it to that date – so my surgeon pivoted plans and told me to report to the hospital ASAP – he would revise my ileostomy, staple my small intestine back to my stomach, and all would be well.
            No part of me wanted to have another surgery.  Another surgery means another recovery.  And another recovery is painful.  It’s horrible what the body has to go through to get back to where it originally was, and with my opiate tolerance, I knew I was looking at nothing good.  But whatever, we could do it.  So the operation happened.
            We thought all was well; the first day after seemed okay; but my surgeon accidentally sewed a blockage, and if you know anything about intestinal blockages, they’re the most painful things you can experience.  It just so happened he was out of town, and none of the other emergency docs in the group wanted to touch me with my history, so I was left to suffer.  I didn’t move for five days.  I couldn’t get up to go to the bathroom, I couldn’t shower, I couldn’t leave the one position in the bed.  None of the medication was working for me.  The NG tube wasn’t draining my stomach fast enough which usually gives me the most relief.  I kept counting down to Monday, praying for my surgeon to get back and do the surgery as soon as humanly possible.
            What I needed was a brand new ileostomy and him to repair the blockage.  And a brand new ileostomy is not a minor surgery.  When he first told me this, I told him I wanted to wait a few months to fully recover from this surgery so I’d be ready for this one; I couldn’t handle two at once.  He understood that, and that was the plan.  But with the blockage thrown in, it didn’t make sense to repair one thing and not the other.  So that’s what we’d do.
            Pain control for me in a hospital is next to impossible; as a chronic opioid user, it’s hard to find something that works, and works well, undergoing all of the severe internal cutting that my body just went through.  My doctors work hard to find something, but it’s not easy, and I always end up feeling an extricable amount of pain.  I ended up leaving the hospital a day early because I was on so many meds I knew how difficult it would be to wean off of them, and that wasn’t a battle I was ready to pile on on top of everything else.  So we’d tough it out at home.
            My family is beyond helpful at this time.  They’re used to this; and so are the nurses in the hospital that know me and for that I am so thankful.  But it’s still not easy.
            I want things to get better overnight.  I don’t want to be hurting as bad as I do at this moment.  I’m lonely.  I’m hard on myself.  I want to be a mother.  I want all these things that I can’t have because I continue to have a body that fails me. 
            I feel so unbelievably low; and I’m trying to find God in all this again, but it’s not easy.  I’ve restarted therapy, because I know I need it.  People like me need extra help in all forms: whether its religion, friends, family, you name it – we can’t do life alone.
            So this is my update, and my thank you to those have checked in while I’m working through all of this.  I appreciate you reading, your prayers, and your being here for me.  It’s a long road ahead..

Survive.

 

Just Me in the Hospital for the 3rd Time Already This Year.
Bringing Makeup Bags and a Shower Cap that Washes Your Hair for You is Key

I’m heated. I’m hot. Let’s do this.

            One month ago I thought I’d be writing a very different tone of blog; I thought I’d be telling you how far I had progressed, that I was enjoying food, that I was starting to be active, able to go out with my friends, and things were changing.
            This is me though.  I should have known I was clinging to the most dangerous thing in the world – hope.  Hope doesn’t exist in my world; it never should.
            I cut on Spotify to listen to music for the first time in two months today.  If you’ve followed this blog or know me at all, you realize what a devastating fact this is – music is my life.  It’s how I express my emotion, the things I can’t say, relive the past and enjoy the present moment.  However, I’ve had to press mute on all playlists for the time being because I don’t want to associate them with what I’m currently going through and I’m also struggling to find joy in the lyrics anymore.
            This ain’t right.
            I’m just over it.
            I recently had someone in healthcare tell me “In 40 years of working in hospitals and with sick people, I’ve never seen someone with the life or luck you have.” And dammit, I’m tired of it.  I go back to my port debacle – it literally exploded in my chest, causing stenosis of my heart vessels.  There is no medical literature on this.  It simply doesn’t happen.
            WHY FUCKING ME?!
            To everyone saying “lean on God, he’s got you” and variations of the words, listen – God ain’t got nothing to do with this anymore.  I am truly, truly trying to find a meaning in the suffering.  A long time ago, I was actually grateful for it.  It changed me, it has made me more thankful for the things that truly matter, I don’t get lost on the first world problems or petty stuff, so trust me – I am thankful for what it did for me.  However, there’s a point where it’s got to stop.
            I am well past that damn point.
            The two weeks in January I had where for once, when I was able to monitor my condition with my pain and stomach medication, are now my worst memories, because they gave me that false sense of hope that things could be ok.  Once you experience what life could be and it’s ripped away from you, you hate everything that much more.
            I’m confined to a chair for work, momming, friending, wifing, and all other things.  Some days I think people don’t realize how sick I am because I choose to try to photograph the happy moments; you want to try to capture yourself at your best, like things could be ok.
            So here’s the deal.
            I’ll have stomach surgery endoscopically March 8.  Thankfully, this should be a breeze.  After that, shit better improve.  Because I’m just mad at this point.  It’s all I have left to feel.
            My child is the most empathetic person I know, but there is absolutely no reason he should be exposed to as much as he has been at this point.  He shouldn’t know how to complete a full ostomy bag change, the definition for stoma, what the hospital machines mean, why Mommy is so sick all the time.  He shouldn’t.

            This is purely a rage blog.  Sometimes, you gotta just get your feelings out.
            I am listening to “Survive” by VHS Collection and hoping I can do that, because right now – I just don’t know.

                                                        Took this photo on One Good Day

 

Me - The 1975

 

I first heard the song “Me” by the 1975 in November of 2013 when I was 23 years old.  I was driving down highway 39 back home, passing the ACE Hardware, feeling super lonely as a fairly recent college graduate who was single, stuck in basic training for Probation/Parole, and things just weren’t all that I thought they were going to be.  The song is all about general unhappiness and just disappointing those you love.  I literally felt time stop in the moment I heard that song and this is when my obsession with the band began.  Now, I pick up “Me” again for very different reasons.

            I think what I want to say is I am not okay.  I mean I’m really not okay.  I am two different versions of myself constantly throughout each day but neither of them is who I want to be.  Things appear better on the outside; I am not physically barred by the walls of a hospital anymore, I can cuddle with my son, I can enjoy time at home with friends can come see me.  But physically I am an absolute wreck and it’s killing my mental health.

            Going into my surgery in November, my surgeon promised me that he did not know if this operation could take the pain away, but it could improve my eating.  As much as I knew he didn’t guarantee me that, every bit of me held out hope for it if I came through the surgery.  What I didn’t expect, however, is that my pain would be remarkably worse, and that is where we are.

            I use chronic pain medication.  There is no doubt a stigma surrounding it, but when I tell you I can’t operate without something being able to block my pain, I can’t.  It’s a gamble trying to find the right opioid for you, just like with mental health meds, and I may be small, but my body can handle a lot without altering my state of mind (and for this, I am grateful that it doesn’t).  As I’ve mentioned to some, my insurance has denied me a new medication that works, and it’s going to cost me $1600 per month for this medication.  Is this affordable?  No.  Am I willing to go into debt over this?  100000%.  It becomes a quality of life issue.   The problem recently has been that I got prescribed the wrong one my body can’t absorb and the amount of pain I experience has made me want to die every single day.

            But how do you explain this?  Pain is something you cannot see, you cannot measure.  It’s a very visicious cycle; for the 1 1/2 -2 hours my medicine works, I feel invincible; I play with Jackson, I text my friends, I post my stories, simply because I am not hurting.  I feel like I can do anything in the world.  But when the medicine stops; it stops.  I’m back to not being able to move, crying, and wanting to just die again.  It’s just that bad.

            My best friend came over to visit and it was wonderful; but before she was there, and I had cried all morning, and after she left, I cried some more.  I try not to cry in front of my son, but this is where I’m lost; how do I accept not being able to care for my own child because of my own pain levels?  I can’t fathom dressing him for school, driving him to daycare, getting his meals ready when my husband is out of town.  I can’t do it.  What kind of mother does that make me?  Of course, Jackson, already the empath, comes over to me and says “Mommy, why are you sad?” and I have to explain about my tummy hurting, which he is more than familiar with.  He tells me to “take your medicine so your tummy feels better.  Your medicine makes you happy.”  He gives me a hug.  Then I feel guilty that a two and a half year old child like him even has to understand all that he already does.

            I constantly have dreams where I wake up and I’m back in my younger body, in those days, healthier, remembering the old friends/times, and it’s torture.  I’d rather not have them.

            In what has been a positive development, I have started to be able to eat.  I do consume small amounts, but I am so thankful for that.  It’s going to be a long road, but this part is okay.  I can’t explain what it’s like to experience and enjoy food after being deprived of it for so long.  Removing my stomach greatly improved my bladder condition; if you remember, I was unable to even season any type of food with that, so everything was so bland.  It’s incredible to eat something and really taste it and enjoy it.  I’ll eat something as simple as a sandwich loaded with mayo and a sauce and I’m like “oh my god – this is the best thing I ever had” and my husband will look at me funny like, “no it’s not.”  I’ve developed a “Lindsay Scale”: is this really a good food?  Or am I just excited because I haven’t tasted anything in years?

            So if I have trouble answering the “how are you?” question or responding to “you look like you’re doing great!”; this is why.  I’m not doing great, I’m not fine.  I’m just trying to survive in the adapted world I have to live in.

            But thank you for your prayers, your messages, and the surprises.  Seriously; every one of them has made me feel good.  As I have had to express, the majority of my life is now lived through my phone and communicating with others that way as I can’t go anywhere at the present time.  Every individual, current best friends, past friends, who has reached out has made me smile.  Y’all are truly amazing, and with my ever present love language being words of affirmation, just a small act or simple string of words goes a long way.

            So thank you for caring, thank you for reading, and thank you for being you.  Maybe I’ll get Me off repeat one day.  Until then…

Little Dude Giving Me All the Cuddles After My Second Crying Spell of the Day

heart - flor.

   

  Well, here we are, less than a month out.

    I want to have some type of memorial blog pre-op, blended with a bit of positivity, before I officially go in. I'm struggling to speak too much on the matter otherwise; it's just all too scary.

    Last Saturday, I was, finally able to go to a UGA football game for the first time since 2017.  It was also the first time I have left my house to do anything fun in months.  And my God; the pure planning and anxiety that goes into doing something as simple as going to a football game.  I was a wreck all week thinking my pain level would wreck the day, especially considering Friday had me bound to a recliner where I couldn't move.  

    Nevertheless, the day arrived, I made it, backpack stocked with all the meds, and trudged my slow ass there.  I will say it is the first football game I have ever experienced sober (didn't know there was another way to experience those, my college self would be shame), had a great time, and couldn't have been more grateful for one good day.

    The next day, by some miracle of God, I was feeling good enough to go to a pumpkin patch with the whole family.  Logan, Jamie, baby B, Becky & Wayne joined us for a day together as a family and I was so thankful to have another decent day.  Seeing Jackson with Connor, with this grandparents, just absolutely melts my heart.

    It's these wonderful moments and these good days that make me terrified for what's next.  As you've known from my previous blogs are talking to me, I have to have this upcoming surgery in order to survive.  However, I have a terrible feeling about it.  I have never had such a gut, bad feeling about an operation or dreaded one so unbelievably bad.  For a refresher on what he will officially be doing: removing my stomach and making a new stomach out of my esophagus, then reconstructing my small intestine.  If the "new" stomach doesn't work (and forgive me if I'm an idiot, this one absolutely confused me) there is some type of feeding tube they create that feeds directly into your small intestine; if this doesn't work, option 3 is the GTUBE - I told him if option 3 happens, find out a way to kick my DNR into effect, because I will, under no circumstances, ever, EVER, have that painful GTUBE ever inserted into my body again.  I call it quits, it's been a good run, I'm good.

    It's all very much: don't have the op, you live, but here's this crazy surgery I know you need, and I'm just terrified.  I'll be driving, or doing something totally unrelated to anything medical, and start thinking about it, and I start bawling.  I've done everything I can to put it all out of my mind, but especially on my bad health days; there is no way to avoid it.

    Recovery is always hardest for me.  For some reason I always seem to have the most complications.  Say I make it to the other side of the op - what happens after that?  Colectomy - 1 month stay.  Ileostomy - 3 month stay.  This summer.  Those are just a few examples.  I tend to lose my mind after all of the anesthesia and drugs (as my family can attest); I know that person is waiting on the other side of the operation so I just want people to remember who I am.  I don't know what I'll turn into.

    There are days where I'm like; I'm good.  It's been a good run.  As crazy as things are now, I am blessed in the sense that I have lived a very good life.  I had an amazing high school experience, college was a blast, I have been lucky enough to have a child when I never though I could.  Maybe I used up all my lucky/fun cards between the ages of 16-24.  If so, well - those were some damn good days.  However, when I imagine Jackson growing older, and me not being there for that, I can't do it.  I want to do what I can for him.  Everything else can fade away, but that little boy is the one reason I just can't go yet.

    I know I joke about death, but it's weird; you've got to have a very dark sense of humor as a person who is chronically ill and sarcasm has always been my middle name.  I have to understand it is a reality, but with Jackson, I just don't want it to be a reality yet.

    I do want to thank everyone who has been so supportive this year, starting with my doctors.  My primary care doctor holds it all together and I am so grateful for him.  My colorectal surgeon is Jesus reincarnated.  I wish I could buy him a beach house.  My urologist and their team are incredible.  My friends - damn y'all.  THANK YOU for EVERYTHING.  For checking in, for not asking how I am and just letting me cuss and talk about anything, for visiting me at home, for taking me out for drinks when I can, for everything. My family - the whole clan knows how to rally together.  I was so blessed to be born into a great family.  I have always said whoever marries me and Logan would end up the luckiest guys in the world. Not because of us - because of our family. And everyone on Ben's side who has helped out as well - we could not have done it without you. I am so grateful for you. To people I haven't spoken with in years and have sent messages - I am a nostalgic person and revitalizing old friendships makes my heart happy.  Thank you for your kindness.

    So I'm going to do all I can to enjoy every good day until November 15.  Call me if you want to get drinks and it is one of those.  I'm putting it out of my mind, I'm praying for the best, and hoping, for once, this does change my life for the better.  If not, you know what song to play.

 Currently Listening to "heart" - flor

    

So Do What You Want, Just Don't Go Dark On Me

Well, hello there.

I have not blogged in a while, or quite frankly written anything at all, because mama says if you don't have anything nice to say, don't say anything at all, and well, that's where I've been.

No one wants to be pummeled with my constant bad news or negativity.  Despite the insane events of this year, and my illness over my lifetime, I am, at my core, a sarcastic, (what I consider to be) funny person, who tries to find the humor in any situation; and lately, I just haven't been able to be that - I've been a sad, negative Nancy.

So that has been me, putting a pause, on any and all health-related discussions.. 

Until this past week.  This past week I finally hit my breaking point.

For a quick refresher; back in February, my Emory gastroenterologist discovered that my stomach was far larger than it should be, 100% dead, and sitting in my pelvis.  Therefore - it needs to go.

I have lost my entire large intestine and have an unhealthy small intestine.  I have already had parts of my small intestine removed due to emergency surgeries.  You can survive without a large intestine, but you cannot survive without a small one.

My dead stomach/unhealthy small intestine combo is causing an astronomical amount of pain and the reason I rely on total parenteral nutrition in order to survive.  At this point, I cannot consume anything by mouth, as the entire pipeline does not function.

I need my stomach removed and my unhealthy small intestine reconstructed in order to live, in order to give me some quality of life.  When I tell you I am so tired of hurting, I mean I am so fucking tired of hurting; but throw the pain out of the equation - I just want to you know, extend my time on Earth.

Obviously, this is an extremely complicated surgery, which is why my Athens surgeon has wanted to defer to the experts.  I am an established patient at Emory, and as many of you know, they have a reputation for being "the best" in the State.

I am not even going to go through all of our phone conversations, because it infuriates me so badly, but I'll leave you with our final one last Friday, delivered via e-mail:

"We have decided your case is too complicated.  You have too much scar tissue for us to perform this operation.  Please reach out to a local surgeon to see if they can help you."

I will say that since I've been with Emory in 2019, this is not surprising, but what infuriates me so horribly is that this can happen.  Someone needs a life-saving surgery, someone needs your help in order to complete basic day-to-day operations, to maybe have a pain-free life, and you know, uh - LIVE, but - nah, bro.  Call somebody else.  Say what?! And I cannot be the only one experiencing this problem with them or the healthcare system in general. What do people do??

I can't even.

I cried, I wept, I cussed, and I called my Athens Gastro Office to let them know the news.  I am extremely lucky in that I have him as an option.  We'll meet soon to discuss what we will do now (after this week and weekend, I'm hoping sooner rather than later), but if I didn't have him - I don't know what I would do next.  Mentally; I would be a disaster.

It makes me infuriated at the healthcare system overall and I've just been angry at the world.  I do my best to pretend that things are normal, I joke, I do my make-up, but I am hurting so insanely bad every day that I do not know how much longer I can take it.  This is how it is for us sick people; you've got these parts of your lives that are amazing (your friends, your hobbies, your families, etc) to live for, but these illnesses and subsequent side effects, battles with hospitals, insurance companies, juggling/measuring medications, all on the side, and it is exhausting.  As I've said before, it's a Jekyll and Hyde scenario every day.

I have also had now around 25 surgeries, and at this point, going under is just another day.  It's just not a big deal.  When I think about this operation, however, I am absolutely terrified. As much as I have had to talk about it, communicate with doctors, hospitals and PAs, I have purposefully not sat here and thought critically about this operation because it scares the ever-loving shit out of me.  It's going to be one of the biggest procedures I have ever undergone, and with even my Athens surgeon wanting to default to anyone else more experienced to do it; it just makes me hella nervous.  I recently had a chest port placement that is absolutely kicking my ass, and to struggle from something small and insignificant has me scared for something so massive.  If I can't heal from something as easy as a port placement, how am I going to overcome this thing?

Recovering from big operations is just exhausting and painful.

So switching gears...

This is also a huge thank you to the massive support network that I have.  I am blessed beyond measure in this way.  I appreciate everyone who has checked in and even asked my least favorite question - "how are you?", because I know it has well-meaning intent behind it, I just hate having to respond with bad news and a negative answer every time.  It really sucks to have to be negative, because the honest truth is not positive, and I want to operate on the
happier side of things when I can.  Thank you to everyone who has talked about anything other than what is happening also - it's just nice to talk about something other than my health (although I recognize the hypocrisy in writing this entire post with that statement) and I'm grateful to anyone and everyone who has also just given me space and talked about anything but.  Lately I just turn to a puddle of tears any time I have to discuss anything related to what's going on, so I just want to distract myself with normal people things (again, I know I'm a hypocrite in blogging, but I feel the need to update, and vent as well - I need that too 😂)

Fingers crossed for more positivity in the next post.. :)

Currently *Still* Listening to "Don't Go Dark" Bleachers

The Resolution

 

   While I feel somewhat vain at times going into detail in the saga that is my life, my goal with these blogs, this book I'm writing (once again I will state - did not realize how hard this would be), is to help someone else out there, to make this suffering matter, so I'll continue to crank them out.  I also need to express a mountain of gratitude to countless people, so here we go.

   Since my last blog, a lot has changed.  Short summation: I was not doing well.  I think I try to act as if things are normal a lot of the time, in the hopes that things will change (hence me going through the painstaking effort to paint my face and do my hair every day anyway - and also, I just love makeup) on the inside, but as I have seen time after time, many things are simply outside of my control.

    The G/J tube was in me, not working, and causing a ridiculous amount of pain.  While I could take pain medicine (the very small amount I'm allowed per day) and sometimes allow myself to move off the recliner to outside, these events were few and far between.  The majority of the time I have simply been laying here, in pain, in that weird limbo where, as I told my husband one night at my lowest, "I will not kill myself.  But I cannot fucking live this way and I don't know what to do."

    Despite the low moments, the hospitalizations, the surgeries, never once have I considered the possibility that I may be unable to work again.  I am someone who loves my job more than you could possibly know.  Never did I think being an academic advisor would have such an impact on my life, and as someone who, at a younger age, had nothing but big goals of climbing the law enforcement ladder, it may seem like a disappointment to switch to a desk job, but it truly ended up being my dream occupation.  Working with drug courts made me realize my life goal was to help others in any way that I could and I'm able to do that as an advisor (specifically Criminal Justice - I mean could you get anymore win/win)?  However, it was slowly creeping into my mind that I may be physically unable to do the job I love most ever again.  If I can't even get off the recliner to go to the bathroom, how the hell am I supposed to get in a car and drive to work every day?

    Plaguing the other side of my mind was this - how am I supposed to be a mother?  I'm at home with my son who is constantly pulling on me, wanting to throw a ball, get on the floor with his trains, and I simply cannot play around with him, lift him, or do anything that falls under the category of being a parent.  My husband is doing at all, and when he can't, my in-laws or my parents are.  This was one of the hardest struggles of all - to my best friend who wrote me a letter about just this on a day I needed it most, you know who you are, and I love you.

    I told my husband I could not have this tube anymore.  This had nothing to do with me still being unable to accept the physical aspects of it; it was far too painful and never has it taken me five weeks to recover from an operation.  And I'm a surgery pro at this point.

    I nervously went to see my surgeon last Friday, July 9th, to let him know what was going on and he examined me in the office.  He advised that the tube was incorrectly placed in my stomach, located too far under my rib cage, which can happen sometimes (I should note that my doctor did not place the tube himself - he would have probably knocked me out for that surgery, he knows what I can tolerate), and that it wouldn't be a long-term solution for me.  Pulling it would be "easy," and he did it in the office.  I screamed a few bad words when he did it, but thank God, that damn thing was gone.  This tube was the reason I was stuck in the hospital for three weeks in the first place.  Set fire to it, burn it, make a sacrifice.

    He let me know that the best case scenario for me for nutrition at this point will be the PICC line, and I'll be permanently dependent on it from here on out.  While this is not the ideal scenario, as PICC lines are at high risk for infection (they are a central line that run directly through your heart), it's what I'll have to live with, which I'm fine with at this point.  Sure, the backpack is annoying, but I've gotten used to it.  I'm planning on decorating it with tons of band stickers.  Would you expect anything less of me?

    Finally, the stomach removal.  While my doctor could do it himself, he agreed with me and my family that it would be best to have it done at the Mayo Clinic in Jacksonville, FL, and knew of a couple of surgeons that would be best for my condition.

    Listen, I'm a crazy, sarcastic, wild, funny, positive person.  If there is one thing this year has made me, however, it's a damn pessimist.  I left his office that day though, with this odd feeling - hope.  I have not felt hope in so long.  It's just a gut (maybe I should have used another term here, because that bastard is not trustworthy) feeling that things are going to be okay for the first time in a long time.  I felt a sense of peace and let me tell you - I have not known peace in 2021.

    I am still in an incredible amount of pain, but it's a pain I feel will go away.  Get rid of this stupid stomach and we're good to go.  I feel like I'm finally on the mend and things are going to be okay.  I'll get to return to that person that I know I am, that job I love, that friend that's freaking nuts, and that mom who is a damn good one.

    I overdid it Sunday by moving around too much and was a salty soul yesterday as I spent the day back in my trusty remote operated recliner getting up only when required.  But that's okay, I'm allowed to be angry, and switching locations from my chair to a friend's chair for one day was worth it.

    So thank you to those of you who have pulled me through, because it has not been easy.  I am continuously shocked by the amount of social media messages, texts (and AUDIO), phone calls/FaceTimes (my personal favorite), and snail mail I have received.  I genuinely mean this when I say that it has kept me going and a reason to fight.  I'm an emotional mess and acts of kindness give me all the feels, so chances are I'm crying grateful tears when you don't even know it.

    And to whoever sent me a record player - WHO ARE YOU?! WHY ARE YOU INCREDIBLE AND WHY MUST YOU BE A SECRET?! My Jack's Mannequin and 1975 records are sounding incredible and have been the soundtrack to my mornings.

    Until Next Time....

Currently Listening to "The Resolution"  - Jack's Mannequin

    

I Always Wanna Die (Sometimes)

 

    So, here we go. I'm not going to say I've returned to the land of the living yet, but I will say every damn part of my life can be described by a song by the 1975 (have I told y'all to listen to them yet? Yeah, I feel another tattoo coming on. Anyway..)

    I'll keep this as brief but as pointed as humanly possible, because I want this one to mean something; not as if my other blogs don't, but when I tell you I have gone through the biggest mental, physical and emotional changes within a 4 week period, I am not lying.

    June 2nd - bladder surgery. No problem. June 3rd - ER visit because my stomach has shut down. I tell next to no one, because unlike heeding advice from my previous blog, I'm embarrassed as hell.  We assume it shut down due to the anesthesia from my bladder surgery - cool; I don't get better.

    June 8th - my husband is out of town and I am on the struggle bus.  My dad, my best friend in the entire world, is up to assist me.  Before I say anything next, let me say that I was always okay with having an ostomy bag.  Yeah, I struggle with confidence issues because of it from time to time, but pre-surgery and post-surgery, no part of me was not okay with not having the bag.  I understand this is a battle for many and I'm thankful I did not have to go through the mental gymnastics of grappling with a shit bag for the rest of my life.

    No part of me ever thought I'd get a G/J (gastro-jejunal) tube, and furthermore, if I had to get one, no part of me was okay with it.  That's where I draw the line, that's where the confidence wears off.

    As we report together to my colorectal surgeon's office on June 8th for my emergency appointment, I barely listened as he told me to report to the emergency room immediately and was casually told it was time for G/J tube; there was no other option. "Say what?" I thought. He told me, but I swear to God the words didn't sink in.  We went home to get my hospital bag that I had packed for a short three day stay (I have this ready to go at this point), I took a shower (y'all don't know how precious these are without an IV), and we texted all those who needed to know. "Yeah, that's what he says," I told my mom, my husband, my mother-in-law; but I swear to you, I didn't believe it. I thought I'd get admitted and they'd decide to do something else.

    Due to COVID precautions and ERs being the way they are, I waited for four and a half hours alone in the St. Mary's Waiting Room in a pain-wasted delirium.  By the time they took me back, I can't even tell you what was going on or who my doctor was, which I always remember.  I just recall hearing the sentence at some point again "yep, we were told you'll be getting the G/J tube."

    My dad, loyal as they come, waited with me until 11PM when I finally received a room.  The next day, they said that I would not be totally put under for the procedure but would be given a high dose of pain medicine and twilight that wouldn't allow me to remember or feel anything.  I tell them what I high tolerance I have for both as a chronic illness patient.  They laugh me off and say trust me, you won't feel a thing.

    I woke up multiple times during the surgery and felt it all.  Trust me, that shit felt (pardon my french) fucking awful.  When we were done, they guy said he never had anyone wake up like that.  I warned him? But I digress...

    They hook me up to a diluadid pain pump, my drug of choice and typically the only thing that works for me.  I will state once again; I am fine taking this drug for a short period of time - after extended periods, I am not.  However, when you are in severe pain like myself and many chronic illness patients are, you absolutely need this drug to survive, and often, it does not cover it all.  You'll still want to sit there and die because of how much you simply just hurt.  I didn't look at my stomach for quite some time because I just could not.  I've got a crap sack there; fine - I don't want to see the tube.  I'm still not mentally ready for the tube.  

    For two days, it all seems fine, until day three arrives and everything shuts off.  My tube is clogged and they can't get it to work.  My surgeon says that he's done hundreds of these in four years and this has only happened to me - he has no idea what's going on.  If it's going to happen to anybody, it's me right?

    Meanwhile, those that operated on my stomach (which is still sitting in my pelvis, where it shouldn't be), tell my surgeon that unlike typically gastroparesis patients who have some stomach motility, I have none. My muscles are 100% dead, rendering my stomach useless.  Guess what that means?  It's finally time to address this partially or even totally remove my stomach; but I can't go here yet.

    I am just about as depressed as I've ever been.  It's been a hell of year, I'm sick of being in the hospital away from my son, I've got a new tube sticking out of my stomach that doesn't work, you're telling me you now have to remove my stomach and my body is now fully addicted to opiates after being on IV opiates for 2 weeks.

    But, it's time for me to turn 31.

    Let me apologize in advance for not responding to any happy birthday messages, posts, or texts.  It will truly go down as one of the worst days of my life.  Reading through medical records now, I just learned that they had to sedate me.  It was a bad day.

    I started out thinking let's just get it over with.  I made a medical decision very few know about but have wanted to do for years; it was not a mental breakdown or something I have not prepared for.  But yes, you're right - I am hella fucking depressed, and yes, you're right - I've got to detox despite being in some of the worst pain of my life.  I will say, I had a FANTASTIC nurse looking out for me this day, and I owe a debt of gratitude for her being there to help me through an absolute mental crisis.

    We had the wonderful nurse, my dad, the chaplin, a social worker, come in and do a mental health intervention on me; yes, it was needed, but yes, it was one of the heaviest days of my life.  I will say - I am okay with dying.  I do not mind leaving this earth.  I have lived a lifetime of pain. But I do not struggle with suicide anymore and I can confidently tell you I never will.  Having my son means that I will stay alive and I will continue to stay alive as long as I am medically able to do so.  As the 1975 say, "Your death, it won't happen to you; it happens to your family and your friends."  That does not mean that things are not okay for me and other people who struggle with depression without suicidal plans; it doesn't mean that things are perfect just because we don't want to off ourselves.  We still need help, we still need support, we still need light in our dark corners of the world.

    During this time, I'm also dealing with withdrawals from the opiates.  Let me tell you, I've talked about this before, but this is my third official detox.  I'm someone who relies on chronic pain medication/opiates outside of the hospital and I take this responsibly; I don't crave the drug, or high if you take too many (I also don't like my head being messed with); I know I need this for pain, so I use them the way they're meant to be taken.  However, when you're hooked up to an IV pumping these into your veins for two weeks straight, your body will get addicted.  I have SUCH RESPECT for addicts (y'all already know I worked drug court for almost two years) who are able to handle detox, withdrawals, and not picking up a drug again.  IT IS HARD.  Your body experiences the absolute worst; fevers, chills, ants in your veins, shakes, I mean you name it.  It's not the high you end up craving, as many have said and what I learned supervising addicts; it's the damn withdrawal people can't get through.  

    So yeah, that was fun, and again, great birthday. Can I please re-do 31?  Like, really?

    After almost 3 weeks of being separated from my family, I was finally released on TPN (this feeds me through a PICC line through my heart) to hold me over through my G/J tube replacement surgery.

    Here is my conundrum:

    I am actually very happy.  

    I hit 30 and I was like, shit, I kinda like myself and life.  I don't know what it was, but it just happened.  I am still unfiltered, swear all the time (I had an ex once say that it was the most unattractive thing to hear a woman curse and I'm sorry I just disagree - I chose my best friend BECAUSE she cursed and there's just nothing like the "f" word), laugh like crazy, I'm goofy, and PLEASE don't get me started on music.  I'm so thankful for the people who are now in my life and the amazing things I do have.  And damn, the good times are REALLY fucking (not sorry) good.  I love having fun and just being an idiot.

    Here's the flip side -

    The bad times are REALLY damn (I'll censor myself here) bad.  

    So what do you choose?  How do you keep going this way?  How do you cope with a lifetime of pain amid all of the fleeting moments of happiness?  It's hard to answer and I don't have it yet.  And please don't tell me to pray about it, because I am still not talking with the man upstairs.  I so appreciate other people praying for me, I truly do; but it is going to be a long time before I can for myself, and unless you have experienced the level of suffering that myself and other chronic illness patients have faced, I just don't know how to explain it any better.

    To quote a recent book I read, Bath Haus by PJ Vernon, "There is no worse pain than deciding to live."

    So ending on the positive...

    I do love my family, my life, and I'm thankful to be alive and for every single happy moment.  It really is incredible how good I feel when I'm not out of commission.

    But I've got a long road ahead.  Just for once, please, let things be okay.

    "If you can't survive, just try." - the 1975

    

    

It's Okay to Not be Okay

 

Here I am blogging and putting off the writing process.

I'm talking a big game for something that may never happen, but I'm trying.

The last couple of weeks have been a wild ride but I need to give a shout-out to a few individuals in the healthcare system and an update, as always.

I had finally recovered from my abdominal surgery and was fully prepared to head into my bladder surgery and be done when all hell broke loose once again.  I was enjoying my time in the meantime, catching up with friends once again, when..

A seemingly normal day turned into a bad one.

I've (fairly) recently reconnected with an old friend and had spent the day at her house drinking wine and just having the absolute best time in the world.  If you know me, I place a high value on old friendships, and there is truly nothing in the world I love more than being with people from my past.  Grateful for the opportunity to have a normal day just shooting the shit, it was finally time to go when it hit me - I'm not okay.

We left as it was my son's bedtime and in the five minutes it took us to get from her house to our house my body CRASHED.  What is terrifying is this is all it takes; this is why I'm paranoid to make plans, to commit, to follow through with anything - five minutes is all it can take to send my body into absolute turmoil.

My husband got my son to bed while I went into my stepson's bedroom (for whatever reason) and laid on the floor.  That's when the worst pain of my life hit and I knew this was not a normal flare-up; it was time to go.

We called the grandparents who graciously speeded over to take care of my toddler.  By the time we arrived at the hospital, I don't remember much.  I was too weak at that point to stand and had to be lifted into the wheelchair and eventually the hospital bed.  I was suffering from chest pains and it was determined that my heart has also been affected by the state of my gastrointestinal system, which had never happened before; this is the one thing that is always okay with me.  I spent the night/early morning there, it was attributed to a virus, and I went on my way.

I may have told 2 people I went into the hospital. At this point, I was just embarrassed.  This year has been so bad and it becomes a point where you are ashamed to admit to people "I'm in the hospital again."  I joked with my friend about what we chatted about the night before and played everything off like nothing happened.  I was so ashamed of my body, of myself, of failing to simply function, as I laid in the chair attempting to work from my computer the next day.  I didn't even tell my boss what happened because I didn't want her to know I had to go into the hospital yet again (I should note I have the best boss in the world - I was just mortified).

Two days later and I wasn't better.  I was at the point of sleeping on the bathroom floor and couldn't lift myself to even get on the toilet.  I knew this wasn't a simple virus anymore; it had gone on far too long.  While stomach viruses can be deadly for me, this was something more and I knew I needed to be fixed.  When I called my surgeon to let him know what was going on, he told me "you go to the ER NOW and you have them admit you - if they tell you to leave, you say there's no way you're leaving this place and have your husband back you up." So off we went.

I will start by saying it was the best hospital stay and ER experience I ever had.  My ER doctor was a 2010 UGA grad and I'm fairly certain we crossed paths in my healthier days.  Every nurse and other doctor who saw me greeted me by saying "hey, I know you" or "you've been here before" while I said "yeah, I get that a lot," and took care of me exactly how I needed.  For the first time, every person listened; when I said I believed something more was wrong, they did more testing, and; guess what - I had c.diff; so, as I believed, it was something more. 

Yeah, gross right?   Honestly, shocked it hasn't happened sooner.  As I've had four surgeries this year, I'm not shocked that the overflow of antibiotics caused it.  At this point, I admitted it to everyone; I'm in the hospital again. I've shut down.  It's okay.

I had an unbelievably caring nurse who shared a story with me of her best friend who had my same condition and had to leave the nursing profession because of how debilitating her condition was.  She knew how hard it was for me to go through everything I was going through, and when my medications were messed up, she had them fixed immediately.  She was overwhelmingly compassionate and someone I'll never forget.

I had a hard time transitioning back home after my stay and I've been dealing with some bladder flare-ups until my surgery June 2, but I'm hoping after that I'm done for a while.  I can confidently say that 2017 me would have never been able to handle 2021.  It would have been over for me.  I am thankful that in 2021 I have a mindset that is happy overall with who I am and who is in my life, that has a supportive friendship network and family.  There have been so many times where I could have given up and haven't because of how genuinely happy I am with life overall; minus this shitty health situation - 2017 was a different time.  

Working on dealing with sick guilt is different thing.  Trying to hide you're sick, not admitting you're okay, from work, from friends, from family is different.  No matter how many times you say "it's okay to not be okay," it's another to believe it.  

So that I'll keep working on.

Now back to that book....

Hospital Internists, Nurses, and Doing More for a Patient

 

    Alright y'all, I can't undergo another insane, wild procedure and not talk about it, right?! 

    This was also TRULY crazy, and something I was totally not expecting, as evidenced by my last blog.  I know I said I was living on borrowed time, but I didn't think it was a matter of minutes..

    When I tell you I have been enjoying life and honestly making the most of every moment, I mean it.  I've been taking advantage of every precious (almost) pain-free minute since my March/April operations.  I have had so many fantastic reunions with friends and loving feeling like I was actually myself again.  It was a crazy feeling.

    Then last Tuesday hit.

    I spent Monday night with some friends, even half-joking at some point how you never know when things can turn for me, and damnit if they didn't.  I got up at about 3AM Tuesday morning with stomach pain and shrugged it off to a salad I likely shouldn't have eaten due to the harsh, leafy vegetables (but vegetation is so good - and healthy!) and limped through my day willing the pain to get better.  I canceled dinner plans with a friend because there was no earthly way I was in the physical shape to sit up straight and had an appointment with my therapist as we processed what to do in a worst-case scenario of being alone in the emergency room again. 

    Thank God we did, because little did I know, I'd end up in that dreadful place 4 hours later.

    In the hopes of putting myself in the most positive mindset as possibly, I blasted VHS Collection's "Searching for the Light" on the way to the ER, hoping this would prepare me for being alone. As I expressed before, being alone in the ER is my worst fear, as I'm often not taken seriously.  I was panicking, in pain, and scared to have another operation I was not mentally nor physically prepared for.

    After waiting for some time, I was taken back and, by the grace of God, given the exact same doctor that saw me last time my intestine was a knot.  He joked with me, but provided me everything I needed: the right pain and nausea meds and had my NG tube on deck (as requested by me) to drain my stomach as I can't physically throw up.  All was well until I was officially admitted into the hospital, but remained in the ER due to lack of beds, and my doctor switched.  I was assigned an internist, and, my assumption here - the nurse felt she no longer should be seeing me, so she no longer felt like caring.  I was left without an NG tube and pain meds for eight hours while I begged and pleaded for someone to take care of me.   Here is a two part breakdown on my thoughts on internists in the hospital and my conversation with the nurse:

    Internists know nothing about you, yet they are given the responsibility of ensuring your well-being, and, in my experience, often do nothing to get to know you.  When you have an established form of care with an emergency room doctor or your surgeon, they should not be able to override that.  I always struggle with internists because they constantly override and overrule an established form of care that I have set in place without seeing my face, my medical history or getting to know me.  This particular internist decided that I did not need an NG tube and refused to give me one (despite the fact I was experiencing an intestinal blockage, my system was cut off, and my intestine was in a literal knot) and took me off pain medication that was SO desperately needed.  I have a plan set in place with St. Mary's for when I come into the ER for intestinal blockage with a specific prescription for meds (I will say that the doctor tried to see if ketamine would work for me this time, which I will NEVER try again, as I cannot STAND to take in anything that makes me feel as if my body is not in control, but you never know if you don't try right?  That's at least going down as an allergy now to avoid accidental usage, but another story for another day) and when you don't even take the time to have a conversation with me and tear down every single plan we have that is working, you should not be a part of my care plan.  

    The nurse during this time was absolutely wretched as I simply asked for an NG tube (WHO ASKS FOR THESE THINGS ANYWAY) and some form of pain control that I had PREVIOUSLY had.  She was unbelievably unkind to me.  After the five hour mark, in a complete delusion, I told her "you are my voice.  I understand that you may be frustrated with things going on in this job right now, but what you have to understand is that I am completely helpless.  I am in a constant state of pain, my body is broken, and as my nurse, you are the only connection I have to someone listening to me out there.  So please, I am begging you, as my voice, for help, in getting me on my original plan toward getting me better."

    This is what bad nurses struggle to see; we do not have a connection with these mysterious internists and doctors that refuse to show their faces to us yet have all the control over our care plans.  We only have them, and we rely on them to speak for us.  No matter what happened in the next room that may have frustrated them, as a chronically ill person, we still need their care and compassion to ensure our well-being and speak for us when we cannot.

    After a nightmare of next day, my doctor told me I would need emergency surgery yet again, and, of course, I'd be alone.  Ironically, I had prepared for this with my therapist two days prior, not thinking I would run into this scenario so soon.  By the grace of god, one of my pre-op nurses was someone I once took Pure Barre classes with, and when I saw her I absolutely lost my mind.  I can't say how much it meant to have a familiar face with me during yet another horrific moment.

    I woke up from surgery with my bladder on absolute fire, which has always been my worst fear.  "Fuck, they used a Foley," I thought.  I am not supposed to use Foley catheters due to my interstitial cystitis, but when I have longer surgeries, it's necessary.  Because my surgery ended up needing to be more extensive than originally planned, the Foley was necessary.  My surgeon revealed that my intestine was growing extra intestine, with the scar tissue and adhesions crossing over, forming little knots along the way, which was causing all the pain and blockages.  This required more time and clean-up, which led to more cutting, and, the Foley.  The pictures, as usual, were awful - but I always appreciate him showing them to me, and he's always so proud to show me that, I'm not insane; my body is.

    The next few days became a battle between my internist, my surgeon, and the nurses.  I don't want to go into too much detail, but the Foley catheter REALLY messed me up, and there are certain things I need for my interstitial cystitis that only my surgeon is aware of; he also knows that I cannot, under any circumstances, use a Foley catheter again.  Despite it being typical to utilize a Foley after three temporary catheterizations, I cannot have this.  My bladder had completely shut down due to the trauma of the surgery and the Foley, but I am not the typical patient.  My surgeon had specific orders for me post-op, and the internist would change them, including the prescription of another Foley and taking away my bladder medication because he did not know me.  This makes ZERO sense.  He also refused to speak to me at this time and did not come by the hospital room.

    Do you know who did advocate for me at this time and did all they could for me?  The nurse.  I had a nurse named Han, and by God, if this woman was not an angel in blue scrubs.  She observed the total nonsense and was just as frustrated as I was.  Not only did the internist screw up my bladder meds/routine, but they also changed my post-surgical pain and digestive medications; do I need to say it again? Without knowing or seeing me.  Of course, my surgeon had to come in and change the nonsense after my nurse alerted him to the issue and he spoke with me face to face, but it was a full day of the nonsense, me being in pain, and almost have to undergo a Foley catheter once again.

    I know I am not the only chronically ill person who deals with these issues, as this is not the first time I've dealt with this in the hospital; it's just been one of the worst times.  And please, do not get me wrong - my actual internist (my internal medicine doctor) is a bar below Jesus, and knows me better than my husband.  How can this issue be fixed?  Let the surgeons and the doctors who know the patient's medical history remain in charge of their care, not individuals who don't recognize them from Adam.

    Han took care of me for three days and we got so incredibly close.  Writing about her now makes me tear up.  We talked about our families, how she got to America, my health/life journey, and everything in between.  She advocated for me, really took care of me, and was there for me in my absolute worst moments - because the past week was not easy.  Good nurses can make or break your experience, and she was one of the good ones.  Wherever you are, Han, thank you for what you do.  I know I'm not the only patient's life you have changed.

    And thank you to the nurses, surgeons, and doctors, who do make a difference.  You don't know how much we appreciate you.

    For me, I'm keeping my fingers crossed that I do not have to see the inside of a hospital for a very, very long time.  Four surgeries down for 2021, twenty for a lifetime - it's time for a break, no?

    Until next time... 

    

Searching for the Light..

 

So, you want to write a book instead of a blog - what is that going to be like?

First, I realize that I'm not a writer.  Blurb posts are far easier than a cohesive body of work.

Second, I realize there is a lot of trauma I've experienced and haven't dealt with.

Third, this is turning out to be so much different that I expected.

I initially thought, let's just talk about being sick - this will help those experiencing the effects of being chronically ill and disabled.

Which led to - whoa, I can't forget about mental illness here; and we all know I'm open about self-harm and how that's important to address.

..there are also a lot of important people and events that have shaped me into who I am today, whether or not they're a part of my life anymore.

I have also held a lot of different lives.  Blessed day, look at the physical transformations I have undergone.  Let's not forget about the important experience I held working with drug court, addicts and what an important role that's going to play later on.

..and here we are.

While I feel a bit self-serving with it all and currently sitting at 12,685 words of my own life that is probably going to take a further 16 and a half months of perfecting (at a minimum), it's interesting.  Some of the most difficult parts for me heading into the future is choosing which traumas to address and which ones do I decide to leave out.  For heavens' sake, I've had nineteen surgeries at this point, no one wants to get into the nitty-gritty of each one.

While I took the advice of "keep the story, change the names," I also have to acknowledge that there are some events that have gone on that are bigger than me.  While I don't mind being as self-depreciating and as open about my life as I can, there are events that happened in 2017 and 2018 beyond what people know that I simply cannot reveal because the picture is must larger than myself.  I will say that the people who held me up during this time know who they are and you are the reason that I am here today - I owe you a debt of gratitude that I will never be able to repay, and thank you for being a friend that I could only wish to aspire to be.  No worries though, I have enough traumatic events to go around.

There are some things I will have to do in-depth research on and conduct family and doctor interviews with because I was incoherent or comatose at the time.  I have medical records to gather and pore over to see what exactly happened, because although I have one of the most ridiculous memories in the world (this is a skill, if you know, you know), I've also been anesthetized for a lot of my life, and while I could quote most of the gastrointestinal system to you, there are still things I don't understand.

Creating my life playlist on spotify has probably been my favorite part of the entire thing, and if nothing comes of this "book," it will have been worth it.  It will also be something that I can pass on and share with those that I love, including my son, if the world never gets to see it.  Just sharing what I had with my parents meant a lot the other day, even though I know it was difficult for both of them to read, as evidenced by my mother's email after finishing.

Despite what I can't share, I will still never be able to play Johnny Cash's "Hurt" and write that 2017 chapter, so I'll be skipping all around and writing the happy times until then.

For an update in the health arena, we've got the good and bad news.  The good news is I'm in somewhat of a remission in both IC & digestive arenas.  It's during these periods that I feel like I do all that I can, in this "euphoric" phase, because I know I'm living on borrowed time until the dark time appears again.  While I'm living with the daily pain, I can manage it for now, so I'm going to take advantage of every single moment.  

My doctor doesn't quite know what to do with the stomach sitting in the pelvis situation to help improve things, and even if a surgery is successful, he can't guarantee that it will improve my situation.  I don't want to explore it right now either.  Mentally, I can't be in a hospital.  I don't want to be hooked up to IV drugs or undergo another operation; I'm exhausted and don't want to be on those medicines.  I was watching Ironman last night and started weeping when I saw him hooked up to the EKG machine and heard the beeping - my mind is truly not in the right place for all of this, the PTSD is just too much.

So fingers crossed that we can avoid the hospital and I can keep enjoying this, dare I say, semi-normal? life for now.

Can I include song titles again? I'm listening to Searching for the Light by VHS Collection, because that's what I'm doing.. 

Frail State of Mind Pt. II

 

    I really don't know where to start with this one.  The perfect time to begin a blog is with fresh, unprocessed trauma, right?! So here we go..
    One thing I have not mentioned recently is that among all of my intestinal trauma my interstitial cystitis was flaring back up.  Every 2-3 months I repeat a surgical procedure called a hydrodistention on my bladder to help abate this pain, but in the meantime I had not shared with anyone outside of my immediate family and closest of closest friends (and even few of them) what was going on here.  You start to feel like a drag after a while and do not want to put your problems on other people - I am working on this in therapy.  I keep a lot quiet and internalize the struggle for fear of exhausting others.
    Last Wednesday, prior to reporting to the hospital for my surgery, I realized how deep my trauma had reached.  I started having a panic attack even thinking about being put under for a procedure I had had before because I simply could not fathom being in a hospital setting again.  For someone like me who has a lifetime commitment to be one of the hospital's premiere residents, this is not healthy.  My dad, the savior that he is, drove up five hours to be there with me while I had the surgery and take care of me after.
    I thought that dealing with the post-op pain from this surgery would be all I'd have to deal with, but let's not forget the abdominal pain I had been experiencing since my last blockage and also not talking about.  I was constantly waking up in the middle of the night, unable to move, unable to eat or function, trying to balance all of this in between operational flares.  Let's forget being able to "mom" or be anything of worth at this point.
    Saturday night I woke up at midnight and could not fully sit up straight. I had gone to bed (on the bedroom floor, my comfort zone) early that day texting my parents "it feels like a blockage" but hoping that this was not true.  I know when something is wrong, and something was wrong.  I crawled up to the bed and woke up my husband and told him the words I hate uttering more than anything: "we need to go to the hospital."  Ben knows when I say this I mean it - there is something not right.  He helped pack up my hospital bag (thank goodness my stepsons were home) and we jetted off to the ER at 2AM.  
    Luckily, since I my last experience there, I've talked with hospital reps and they have somewhat of a "flag" on my account which allows them to listen to me more and has words drawn up of my typical remedy.  I was especially thankful for this as we were quickly whisked back and my husband helped put into words what was going on with me (I should also note that my guts were coming out - did I forget that part?) so that the proper remedy could be delivered.
    My husband has a job where he has to travel and not always be with me.  I'm not going to say this is easy to deal with, because it isn't.  This is where my parents really step in, with my dad having the most flexibility in his job, but my mom is always there every single time she can be.  After my husband left once I was settled to take care of our toddler and get ready to go out of town, I felt comfortable enough alone to be able to speak with the doctors, as my surgeon (the human equivalent to Jesus) would be on the way to meet with me, and there is no one I have more faith in than this individual.
    I was able to detail to him the exact spot in which I was receiving the most pain, as this one portion always flares up.  He immediately thought we needed to operate to repair what was going on here, and thank God for that.  I can't begin to describe what it's like going into surgery.  It doesn't matter how many times you've had it, when you're having a major operation, you start to lose your mind.  I don't care how many drugs they give you, you're scared shitless.  I can remember every detail of being in pre-op and the nurse trying to calm me down and talk me through what's going on.  I'm tearing up writing about it - PTSD and trauma in the chronically ill is a very real thing.  The nurse took my engagement ring for safekeeping, said a few encouraging words and the always "you're too young for all this," and sent me on my way.  Lights out.
    The first thing I remember after waking up was my doctor showing me a picture of my intestines in a total knot and saying "you were completely right, look at this Lindsay," and me losing my absolute mind.  Drugged up, barely coherent, I just kept saying "I wasn't crazy, I wasn't crazy," while he repeated "no, you weren't crazy.  You were right, look what was wrong with you."  You often get dismissed when you have an invisible illness, because it's something you can't describe - but seeing in photo form the turmoil that was going on inside of me that I was trying to cover up was so validating.  No wonder I was in so much pain and nothing was passing through me - my remaining intestine was in a complete knot!  
    Dr. Carr came and saw me a day later and I was feeling horrible from the post-op pain but grateful that the original pain was gone.  I can't tell you how many times I have thanked this man for believing me and fixing me when no one else would (let's not forget he saved my kid's life and operated twice while I was pregnant).  He is completely humble, empathetic and kind, saying "you've always led me right to the problem, it's not an issue at all."  I tell him I would buy him a boat if I could afford it and mean it.
    This will be another trauma I have to file away and hope that nothing else comes about in the meantime.  January/February/March 2021 will be added to another chapter of Feb/Marches (I detest these months) in which I've had to fight my body.  Bless my therapist - she's got a lot of work to sort out this week.
    Thank you to the friends who have remained my confidants and stood by when I can't barely stand myself.  It takes a lot to hold someone like me up, I just hope that I'm worth it when I'm good :)
    Until then, I will be trying to remember that I'm not worthless just because my body is built different.  With a heating pad and not moving, of course.