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