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.

    

   

A Positive ER Story & A Note of Thankfulness for Healthcare Workers

 

Because I cannot stand to be full of negativity and I would be remiss in sharing the positive experiences I have had with doctors, I wanted to write a post detailing a recent/past ER visit in which I received proper care and what I do to make doctors, especially those dealing with the chronically ill, feel appreciated and valued.

I recently learned that I have a condition called gastroptosis where my stomach has dropped into my pelvis.  As you can imagine, it is clearly not supposed to be there.  This is likely why I have been experiencing the gastric and instestinal blockages that I have been so loudly advocating for myself for, and, my stoma has started to prolapse once again as it did when pregnant, which means - yes, my guts are out.  I don't think I've divulged this information out to too many.  It's not an attractive piece of intel to share.

After almost two weeks of being unable to eat and not having a doctor listen to me, I was at home with my parents caring for me as my husband was out of town. I went to bed on the bedroom floor around 6PM as I was feeling particularly unwell and woke at 11PM in some of the most extreme pain of my life.  I physically could not move.  After trying to call my parent's name with no result, I managed to crawl to their bedroom and knock on their door, as this was all I could muster.  I told them I needed to go to the emergency room - so you know it was bad.  They called my husband to see if this was a good plan - we had a 50/50 shot - either I would be dismissed again, or I could get some version of care. I was ready for the risk. Anything to put me out of my misery. We called my colorectal surgeon's on-call line first, and once I described what was going on, including my protruding guts, who advised I needed to go in, and that was all it took.

The ER, was, thankfully, empty.  I was taken back to a room quickly by a kind nurse who appeared to take my concerns seriously.  I told her my history and that I had just been to two ERs before this visit and quickly dismissed, but I was desperate for care and in even more pain for care - this had gone on far too long.  She called in the doctor, and I could not have been more thankful for who entered the room.  His name was Marty, and he was the doctor who treated me for an intestinal blockage almost a year ago to the day back in 2020.  As soon as he walked in he said "I remember you.... you have a bag.  You had a blockage in here about a year ago."  I could have started crying delusional happy tears in that moment.   "Yes, yes you did."  I responded.  "You are one of the few ER doctors that's ever taken me seriously and you were phenomenal last year."  "Well," he said, "I'm not going to beat around the bush - you know your body better than I do - tell me what's going on and what you need."

What?  I'm being asked what I need?  What to do?  I remembered him being amazing, but I didn't quite remember this.

I rounded off the list of medications I typically use for an intestinal blockage and requested (yes, requested) an NG tube due to the fact that I can't physically throw up.  Anyone who requests an NG tube is obviously in pain and hella nauseous.  He responded that he'd have those medications in as soon as possible and that "I'll get that NG tube up as soon as you can down a contrast for a CT scan to see how bad this blockage is.  Looks like you had a blockage on your last CT from your last ER visit but those CTs aren't going to work well for you - we need to see the extent of it.  If you can't down all the contrast in your condition, that's completely fine. Let's just see what you can do.  As soon as it's done I promise you that you can have that NG tube."

Me and my mom were shocked.  We both thanked him, admittedly through pain and with tears, for listening to me, after two weeks of being put through hell and suffering on deaf ears.

"Listen, you deal with this condition every single day.  You know your body better than I do.  If you tell me this is what you need, this is what I'm going to do."

If I wasn't drowning in medical debt I would buy that man a damn yacht.

I remembered him being the exact same way a year ago.  The nurses continued to be phenomenal, show me care, deliver my pain medication when I needed it, send my nausea meds when that got progressively worse, and install that wretched NG tube with the utmost care.

When I had that experience with him in his team in the past, I called the hospital administrator and made sure I remembered his name as well as the nurses assigned to his staff that I interacted with so I could compliment them based on how they dealt with an ER patient and someone with a severe illness.  I do this every single time I have a positive ER experience.  These healthcare workers that fight for and are the voices for people like me need to know they are heard and appreciated.  While I have spoken that burnout is not an excuse, it affects many, and those it has not corrupted need to know that their work means the world to those of us like me. 

It didn't stop there - the nurses who took care of me during my 6 day stay made sure to check in on me with the exception of one (I won't go there, but let's just say it was bad, and the positive experiences I had with the others far outweigh her negativity), deliver my medicines in a timely manner, made sure I felt cared for, and took my condition with the utmost seriousness. I felt left in the best of hands.  The PA for my colorectal surgeon was phenomenal and got to know me and my extensive, encyclopedia of a history, wanting to know what to do what's best for me right now and in the future, and I couldn't be more thankful she is part of Dr. Carr's outstanding staff.

I have sent cards to my doctors, surgeons, and front desk medical staff.  I even deliver donuts and cookies to their offices.  I make sure to always complete positive marks on the surveys they send out.

These are small things, but these are ways to make sure they know they're appreciated and the work they do is valued more than they could possibly realize. 

I would not be able to function without the help of my all-knowing, compassionate primary care doctor, who has always gone above and beyond, my colorectal surgeon, and my urology office.  These people keep me standing every day, and for that I am beyond thankful.

So for this, I wanted to share. Let the people who make a difference in your life know.  Whether it's big or small, let them know they are valued.  It's important to let them know how much you appreciate the work that they do for you as they fight for your beautifully broken body. 

Hoping This Year Will Be Better Than the Last

 

    2021.  It is finally here and I feel as if not much has truly changed.

    This blog is going to be a quick one and more of a life update.  I have a little bit of a life update and a bigger project in the works (more on that in a bit).

    First, I want to start off with a bit of gratitude.  Looking back at the end of the year, November and December gave me some of the best, healthiest moments of 2020, with so many sprinkles of happiness.  I had the occasional flare-ups of pain, of course, but the good outweighed the bad.  I spent valuable moments with my family and friends and made memories that will last a lifetime.

    I had anxiety leading into Christmas, as it was going to be my first one without my grandmother, and my first one without a big family gathering.  Mostly, I wanted to be able to enjoy it - this meant being extra cautious with food and sending up all the prayers that I could truly have a few days pain-free and filled with health to maximize the time with my sons, husband, sister, and parents.  Luckily, these prayers were answered, and while I could not quite chug as much as everyone else during "Ring of Fire," I thoroughly enjoyed Wayne in prime form.

    However, things have quickly decline since Christmas.  I have, once more, truly struggled to function on many days, and my pain has been all-encompassing.  Thank goodness for my phone and books, as they have helped occupy my time, but even some days the pain has been so bad that I cannot concentrate enough to read.  My husband has had to pick up the slack with my toddler and around the house - always the rockstar.

    I am doing what I said I would never do (as documented on this blog) and having another operation.  I have maximized every medication I possibly can and there is truly nothing left for me to do but to have another bladder surgery to see if it can provide relief.  The only correlation we can see between me being somewhat human in November & December is the fact that I had my last bladder surgery September 28th, so here we go again - let's hit that insurance deductible 22 days into the year!

    While I am absolutely dreading the recovery as it has been insanely painful, I am keeping my fingers crossed for the payoff.  I cannot keep going the way I am and I want to return to the land of the living, being a wife, a mom, a friend.

    2021 also has my plate full of many projects. I mentioned to my husband that I hope I do not overwhelm myself, especially with my health currently in the state that it is. I want to do my job the best that I can, to enjoy my side projects, to be the best mom, and to commit to the project I have long debated in doing, which is..

    Writing a book.  I know many of you have suggested I write one over the years, but it has long been a personal goal of mine.  With the chaos that was 2020 throwing my health into the absolute blender, it further affirmed that I wanted to put this all on paper.  I recently read Sarah Ramey's "The Lady's Handbook for Her Mysterious Illness" and it had my heart in pieces.  It's the author's personal testament to dealing with a chronic illness, being shuffled from doctor to doctor, being dismissed, poorly treated by health providers, and her personal struggle. It resonated with me so much and further motivated me to finally begin writing.

    One piece that was not talked about much in the book (and absolutely did not have to be if the author did not struggle with it) was mental health.  I have long struggled with mental health issues, further exacerbated by my medical struggles.  It is something that I want to address and touch on as I think it is absolutely vital in today's time - so many people are dealing with these issues, whether they have a chronic illness or not.

    Of course, reliving this, from the very beginning, means visiting a lot of trauma, as I knew it would.  It's difficult to re-experience and write it down and I often have to take breaks.  I am not proud of the person I was at a young age by any means, and while I have no problem admitting my faults as a young individual, it is difficult to relive what I went through at that time.  I do not want to know how horrific it will be to start re-visiting the later hospital stages!  It's likely this project will take a while and who knows how it will turn out - writing a blog is much different from a book!  And who am I to say my life is that fascinating?  At times, I feel a little self-important.  However, I think the message is significant - I have always wanted this life of suffering to mean something.  If what I have gone through encourages somewhat to seek out help for their depression, self-harm, to seek another medical professional, or just know that someone else is going through the exact same thing, that means a lot to me.

    Finding others online within the chronic illness community helped me through some dark, difficult times.  Reading Ramey's book (specifically chapter 18) made me realize that I wasn't alone.  If I can do that for someone else, I would like to at least try.

    So here's to 2021.. fingers crossed for a successful surgery, relief, and for following through with my very first resolution.

    I'm counting on you all to hold me to it.

The Midnight Library (and All Your What-Ifs)

 

    Have you ever wondered what would have happened if your life had ended up differently?  If you had chosen a different path, taken a chance, made another choice in lieu of one of your regrets?  Selected one relationship over another, put more effort into something else over another passion?  Or, just had the fates choose your overall path in a totally different light?

    I recently read a book entitled "The Midnight Library" by Matt Haig (the following blog is spoiler-free, I promise - because if you haven't read it, I am telling you now that you must) and it completely blew my mind.  I am thirty years old, but let me tell you, I feel as if I have already lived a thousand lives.  You can usually mark my life changes by hospital stays, weight fluctuations, or, as I'm always teased about, a hairstyle flip (RIP to the Ashlee Simpson stage #neverforget - but can we?!).  Why is it that when I feel like I'm going through an emotional crisis I feel the need to change my hair?  It makes no sense.  But I digress.  I have lived in a body that was over 160 lbs due to my digestive system being unable to expel anything I was consuming (and, a bit of indulgence on my part - I'm not denying that):

to being a 150 lb law enforcement officer, dedicating my life to bodybuilding and being able to bench press more than I weighed when I was in somewhat of a remission phase and my meds were working,

  
to now, where I'm lucky if I actually tip the scale at 110 lbs (shout out to trying to balance a gastroparesis and IC diet). 

Currently, I'm unable to work out as putting any pressure on my bladder sends me into a flare. The mental transformations, occupations and miles between these people in these pictures looking back at them is astounding.

    While I was born with a paralyzed digestive tract and a dead colon, we never knew how it would impact my life until much, much later.  I began college intending on entering the field of law enforcement and leaving my mark, doing all I could to be the best officer I could be, whatever agency I ultimately landed in.  While I always wanted to start out being a police officer and eventually make it to the GBI, I was a runner and was not strong enough to pass the push-up test (hence my body-building stage with the best trainer out there - I was mortified). I "defaulted" to probation, never knowing that I would fall in love with it as much as I did. I ended up declining further interviews with the GBI after I had made it further in their process as I was enjoying felony probation so much.  Sticking with probation led me the best professional experience I'd ever have, working with felony drug courts, meeting incredible offenders overcoming addiction, teaching me so much that would play into my own detox after being in the hospital for 3 straight months.  I also learned that I'm probably too sensitive to be a police officer, that helping people for the rest of my life was what I wanted to do, and that's how I landed in advising.

    I say all of that to show how beautiful fate works out.  While I had such a different vision for my life, it worked out completely different from what I expected. If you told me my dream job would be academic advising when I was a kid, I would say you're crazy - aim to be the head of the FBI! However, people do not understand the amount of empathy and understanding goes into this occupation.  Job aside, the novel also taught me about the bigger picture in life - WHY THE HELL DO BAD THINGS HAPPEN?!

    I'm not going to sit here and say that I have had an easy life and I'm also not going to say I've been happy about the hard times, because I 100000% have not been. In the bad times, I have constantly wondered, "what if I was born healthy?!" How different would my life had been if I didn't have to worry about every single ingredient in every food I consume, what pain level I'd be at for the day, where the nearest hospitals are, whether or not I'd be able to work?  Would I still be that law enforcement officer? Would I still have some friendships?  Did I lose some relationships because people were sick of not being able to hang out with me, or just hearing my crap?  Wouldn't I be so much more fun and easier to be around if I didn't have all of these issues? I found this quote from the novel beautiful:

"It is so easy, while trapped in just the one life, to imagine that times of sadness or tragedy or failure or fear are a result of that particular existence. That it is a by-product of living a certain way, rather than simply living. I mean, it would have made things a lot easier if we understood there was no way of living that can immunise you against sadness. And that sadness is intrinsically part of the fabric of happiness. You can’t have one without the other. Of course, they come in different degrees and quantities. But there is no life where you can be in a state of sheer happiness for ever. And imagining there is just breeds more unhappiness in the life you’re in.’"

    BAM.  It hit me like a ton of bricks.  It is so easy to imagine the "what-ifs?".  What if I was still that healthy, strong weightlifter?  What if I didn't have pain all of the time? What if "X" was still in my life? What if I had chosen "X" over "Y"? I'm sure I'd be happy then...

    But is that true?  What are the repercussions for that?  What do you lose by living that particular life; what life lessons are given up as a consequence?

    I have done so much reflection this year on everything that has happened to me, as I mentioned on a previous blog, and this novel just made me examine my entire life with a more thorough microscope.  How much has having this difficult life taught me that I would have lost if things were easy?  

    I'll share another quote that resonated with me:

"we spend so much time wishing our lives were different, comparing ourselves to other people and to other versions of ourselves, when really most lives contain degrees of good and degrees of bad.’"

    No life is free of heartbreak, trials, struggles, or pain.  I have hurt in this one and I'm sure if I lived in another life, I'd hurt in that one.  What I do know, is this life I am living has taught me a hell of a lot.  People show up for me.  While I mourn friendships I have lost, or lost touch with, I have had so many people show up for me this year, and in the past, when I need them.  You know who you all are and you mean the freaking world to me. I cannot begin to put a price on how much that means to me and I aim to be the friend you are by your incredible example. I do not have time to hold grudges or be angry about things anymore; I have just learned to let things go. I have said and done hurtful things in the past.  People make mistakes and all we can do is aim to be better for those that we love.

    Empathy.  It's probably my favorite strength that I have in the Clifton Strengths-Finder Test, and I promise you that prior to 2012 thit would not have been listed as one.  I was privileged, selfish, and had not really had to struggle.  My issues with my health had not truly come to the forefront at this time and I was just a college kid making it through.  Working with the populations I did during my time as a felony probation/parole officer taught me so much socially and mentally I've been through the wringer when it comes to my mental and physical health. You never know what someone is going through.  Always consider someone else's perspective.  Do something kind for someone.  To quote the Midnight Library once more, "never underestimate the big importance of small things." 

    It's so easy to imagine if a different relationship/friendship would have worked out or if someone was in your life, if you did not have this mental/physical issue, if this job or that job would have happened, but where would you be with it?  Can you still repair something you've lost?  It's never too late to reach out to someone, make things better, work on something that you'd like to.  At least that's what I'm trying to do.  Make lemons out of lemonade whenever possible.

    While you're in this particular life, you can make in the best possible one that you can.  I'll end with this quote..

"So let’s be kind to the people in our own existence. Let’s occasionally look up from the spot in which we are because, wherever we happen to be standing, the sky above goes on for ever....The impossible, I suppose, happens via living. Will my life be miraculously free from pain, despair, grief, heartbreak, hardship, loneliness, depression? No. But do I want to live? Yes. Yes. A thousand times, yes."

    

    

Give Yourself a Try

   

   So here we are, nearing the end of 2020, closing on what has been, undoubtedly the most difficult year of my life.  Every year I think that things cannot possibly become worse, but somehow, the universe seems to challenge that theory, and I pray 2021 can't top it. This blog is going to start off a bit negative, but, I promise you - I'm not keeping things that way!  Keep reading; my negative nancy vibes don't last for long.  However, to give you some background on my fear of the years and why this is justified, the track record stands as follows:

2015 - colectomy with a 1 month hospital stay
2016 - the failure of my colectomy and what was a horrible cancer scare
2017 - my ileostomy placement that led to a 3 month hospital stay and an additional surgery, 40 pound weight loss, my body becoming dependent on opioids in the hospital as a result of the stay and insane pain and additional surgery, being tube-fed for over a month
2018 - my closest friends know why this year was the toughest for me and you and your friendship are truly invaluable - I love you with all my heart and thank you for being here for me
2019 - my gastroparesis retaliated with a vengeance
2020 - reference my "Frail State of Mind" blog and those prior to get a recap 

   Despite having a failed operation, a new diagnosis that has drastically altered my life, made it difficult to function on many days, and having to now juggle a multitude of conditions, I feel like 2020 has been the year that I have truly found myself.  As corny as that may sound, it is true.  As I look back on past ages, me being 17, 20, 22, 24, etc., the core of me is still there - I am still that crazy, loud, emo-music loving, empath, unfiltered person, and that part of me will never change.  On the other hand, a lot can be said for maturity and I feel as if this year has made me grow up more than ever.  I have had to truly examine who I am, who I want to be, and what matters most to me in life.  Having a kid will definitely fix your priorities - anyone who has a child knows that; but whether or not you are a parent, 2020 has been a difficult year for anyone where we have all had to drastically alter how we operate on a day-to-day basis.  It has given me a lot of time to think and reflect on how I can mentally handle my new condition on a daily basis and in the future.

    On an unrelated note, this time at home has made me miss relationships that I once had.  I have truly started to miss friendships that I had with people I was once close with but may not be close with anymore.  I have loved reconnecting with some old friends, but missed some I have not. While it's difficult to get together with people in the COVID age, simple text messages and phone calls are an easy way to get in touch.  Sometimes it's disappointing to not receive a follow-up message or wonder where you went wrong in a friendship. Admittedly, I place a lot of blame on myself for placing a lot of attention on my condition over the years and not making myself available to others.  I am an extremely nostalgic person and miss people more than the average person (in my opinion - this is totally unverifiable, I acknowledge this).  If you're a friend reading this that would like to reconnect, please reach out.  I miss those from high school and beyond.  As mentioned before, the empath in me cares and feels so much for anyone who's ever entered into my life, and as I now feel like I have gotten a hold on my conditions, I am so ready to repair relationships I've let go in the past as a result of placing so much attention on my medical issues.

    It may have taken a full eleven months to finally do so, but mentally, I feel like I am finally in a better place to have a handle on my conditions and everything that has happened this year.  That is not to say I am happy about it - but I now have the mental capacity to accept, live and cope with my illnesses.  I appreciate each and every good day and try to maximize my time (well - I say that; my husband will beg to differ with me - he's still waiting on me to actually do some push-ups and crunches like I say I will do on a good day 😊).  If you had told me I would have this attitude back in March, I would say you were insane.  In March, I was ready to let it all go.  I was living for Jackson, and Jackson only; if there was no Jackson, I likely would not be here.  I still apologize for the bad days when my husband has to do the tasks around the house and take care of our son, which I shouldn't as I know it's out of my control, but I've become better at realizing that it's okay - I can't blame myself for this and these days are going to happen. 

    I have mentally accepted that I am a person living with a disability and a chronic illness and things will have to be adjusted for me.  That does not mean, however, that I cannot live life to the absolute fullest in the way that I can for me.  I can still have a blast, enjoy time with friends, be the bubbly, wild, insane person that I am, play with my insane toddler, be a good wife, the best stepmom to these growing boys (they were seriously just tiny people 2 seconds ago), and all of the "normal" things "regular" people do.  On my bad days, it's okay to say I can't.  There may be more of those during some periods (like last week - boy, it was rough), and I may have some really good stretches; I really never know.  But damn, just take advantage of every single good day, because they're the actual best.

        While I may have the worst stroke of luck I feel, the one thing that has come together for me this year is my job.  When I was in high school, I always knew I wanted to do something in the vein of law enforcement.  I wasn't totally sure what that would be (maybe something with investigations) but I knew I wanted to be involved with the Criminal Justice system.  Stress and my illness pushed me out, but helping people with drug accountability courts made me realize I wanted to help others as a lifetime career and academic advising completely filled that role.  Being hired as the academic advisor for the Criminal Justice program, the same program I graduated from, has made my heart unbelievable full.  Helping these students makes me SO happy.  Even when there are high stress times, it's a GOOD stress, and I truly adore these students.  My adoptive mother asked me recently "How does it feel to find your forever job?" and I thought, it feels SO amazing.  I won't apply for another job the rest of my life - I am really here to stay.  Of all of the things that don't work out for me, this has and I could not be more grateful.

   We read a book for a book club I'm in recently where characters make a deal with the devil for one of their most desired wishes in exchange for a shorter life and, of course, to sell their soul.  It got me thinking - when the clock turns 11:11, when I see a shooting star, when I blow out candles on a birthday cake, I've never wished for anything different other than "to be healthy."  If presented with the same opportunity, would I trade years of my life for the same thing?  While I would undo all of this suffering and the PTSD I have because of it, it has shaped me into who I am now.  I see the world completely differently, place value on different things, appreciate things more than one normally would.  As much as being in this body that I have sucks, it has truly changed who I am, arguably for the better in some cases, and led me to a place in life that I am grateful for. 

    With all that has happened to me, the one thing I want is to make this suffering worth something.  I don't know how to do that, where to get started, or what to even make of it all.  Do I write a book?  Be a motivational speaker?  Do something on a social media platform?  Start a Tik Tok (totally kidding on that one - I will not start a tik tok.)?  Those are completely lofty goals, but I want to make this life that has been chosen for me worth something.  I want to help others that have found themselves in a situation like me know that they can get through all of this, no matter how bad it seems.

    Don't get me wrong, I sometimes question this on the bad days.  I have to constantly refer myself back to the mindset I do on the good and remind myself of what I'm living for.  It takes a lot of positive thinking, medication, and a support system that I could not be more thankful that I have.

    I told myself that if I got through this year I would get a tattoo of my favorite band (you already know, The 1975)'s lyric "Give Yourself a Try" tattooed on me.  If there is one thing I've done this year, it's given myself a try.  Just like the song says also, I feel like I got "spiritually enlightened at 29."  I have really given myself a chance at being a wife (hey, if covid quarantine didn't make me and Ben kill each other, there's proof enough), at being a mother, at becoming who I am.  I have always been unapologetically myself, no matter what, and this year has proven that.  I've given myself a try to survive despite having all the cards stacked against me.

   I'll continue to do that and try to make this life worth something, all with the help of those around me.

    

Something I've Been Waiting On

 

               I feel like it was just yesterday that I was writing an updating on my stomach surgery.  I’m reflecting now and realizing that it’s been over two months since the procedure and I have had yet another procedure (let’s add notch #5 to the operation belt of 2020) to experiment to see if it would help relieve the pain that I experience on a daily basis.

               This blog is going to be one of realization, acceptance, despair and hope all rolled into one. The last couple of weeks have been a bit of a rollercoaster. Let me say that social media and what I share with everyone does not show it all – you never know what’s going on with someone.  Be sure to check in on your friends.  I have had some damn good days, but by God, let me tell you, I have had my lows.

               Bottom line – I am going to hurt every day. How bad? I do not know. Will I be able to function? It’s up for debate.  I am going to put on the bravest face I can though.

               Last Tuesday night I had absolute breaking point. I went to bed at my typical old-lady 9PM in pain but hoping I’d sleep it off. I woke up at midnight in the middle of nightmare that turned real. My tears were a reality and I waddled out to the recliner to take my typical stance in the recliner and resume the heating pad position (I should note – my legs are permanently scarred from heating pad burns at this point).  Things continued to get worse, but I told myself I’d get through it, but I never drifted back off to sleep.  For one of the first times in the semester, I had to cancel a remote advising appointment – my god, what a failure I am if I can’t even put on a brave face over zoom?! I contacted my students around 4:30AM and said I’d re-schedule them as soon as I could mentally construct an e-mail with how I felt.  Tried to talk myself down and realized it wasn’t going away.

               Thanks to having, quite possibly, the greatest urology nurse of all-time, I contacted her at 7AM and informed her that I needed to be seen as soon as possible.  She got me in for my typical instillation a day early and set me up with the nurse practitioner due to some other issues.

               I will say this – my entire life surgery has been a promise and a cure to everything but it has never delivered. My ostomy bag has greatly improved my quality of life and it along with the colectomy is the one surgery I do not regret – but I have not experienced a cure and false promises are something I’m over. 

               I could hardly walk, think or see due to my pain level. Because of my ostomy and pain tolerance, pain meds and management are difficult, so basically, I’m SOL.  I went into my meeting with the nurse practitioner a mess.  Did she have any good news to deliver me?  No.  But Lord, was it something it appreciated.

               I’ll backtrack here for a moment and say – ever since 2020 started I have had a horrible relationship with God.  I have been angry, disgusted, confused and just overall exhausted.  Why me, why this?  I’ve mentioned it before, but I stopped talking to him for a long time.  Only recently have I attempted to pray again and it’s difficult.  Unless you’re someone with a chronic, debilitating illness, or someone who has found themselves in the worst of circumstances, it’s hard to understand a loving God putting you in the worst of mental, physical, emotional circumstances that makes you feel your lowest of absolute low.  I have been slowly trying to repair that relationship, but it isn’t easy, and it’s a process.

               Back to my meeting – the NP was an angel.  I was a mess.  I recapped everything I was going for.  What did she tell me?  There’s not much we can do for you that we haven’t already tried.  There is no cure for IC – you’re doing every single thing right.  With your gastro issues, pain meds are going to be difficult to totally manage it all. There’s not nearly enough research in the field. I wish there was more, but there’s not. We cannot provide a cure for you.  I expressed my spiritual issues in a fit of despair and she spoke with me about not being able to understand why God does these things to people.  Did she fill me with false promises? Did she suggest another surgery or treatment to say this “maybe” would work?  No.  She said – this REALLY sucks, it’s one of the worst, most painful conditions she’s ever seen and it doesn’t get better. Did it suck to hear? Yes. But damn – THANK you. Thank you for the honesty. I’m sick of false promises, just tell me straight up.  My mentality will be all the better for it.

               I won’t dwell on what’s been going on with my stomach – honestly, that’s enough – but it isn’t good.

               In the midst of political turmoil, I spoke in depth with my husband about issues one night.  I got emotional about my health issues and my frustration with God about everything that has happened but my reminded me, as he always does, to focus on the positive side. 

               2020 has been my absolute worst year.  However, in the worst time of my life, and in the middle of a global pandemic, it still allowed him to be home in a time when I needed him the most.  There is no way I could have survived this season without him at home to help care for me, navigate this new diagnosis, the bad days, caring for my son when I can’t, and taking care of me on the days when I can’t care for myself.  As horrible as this time has been, I am so thankful he is here and has been able to help out in so many ways.

               My parents are always here at a drop of a hat.  I can’t name a single surgery (and to be honest, very few ER visits, and I feel like I’m upwards of 50 at this point) that my dad hasn’t driven up for.  My dad is my best friend – if you know me, you know that at this point.  This is not to say my mother isn’t incredible; she is one of the strongest people I have ever met – her job is very demanding and not as flexible, so she is unable to pivot as my father can.  I’ve got an incredible support system who is ready to assist me and my family at the ready.  While I may have a laundry list of conditions and uncertainty, there are those who love me and have been ready to get me through it.

               Lastly, this has been the year that I have truly, truly fallen in love with my job.  I may have fallen in love with Criminal Justice and known a life of law enforcement was for me at a young age, but ultimately, that didn’t end up being the final career path for me.  Advising has been my “final” career, and merging the two together has made me SO incredibly happy.  There are days where I feel awful but I’m able to mask my pain and things going on because I can lose myself for a while with working with my students in a job I truly love.

               I have my low, low moments, but I have had blessings.  I’ll work on thanking the man up top for that and hopefully building that relationship up again. For now, I just keep hanging on for something I’ve been waiting on.

*listening to "Something I've Been Waiting On" by Hardcastle

Everything is Alright

 

    It's been a while since I've checked in and I feel like I'm in a better mental state to update you all on what's been happening, so here we go..

    On August 6th, after putting my bladder through what might have quite possibly been the worst torture of its poor little interstitial cystitis-ridden clear liquid-diet life, I underwent the G-POEM surgery for gastroparesis.  After being formally diagnosed with this chronic disease for 13 years, I took a chance and had the stomach surgery that would hopefully allow me to eat like a normal person.  To update you all, my stomach and small intestines are paralyzed and it takes my stomach 19 hours to empty (hence my skipping meals, my infant size portions and small-sized body frame; trust me, I know I don't look like I did in high school or have that body-builder frame I once had).  My surgeon told me ahead of time it was a long shot due to the severity of my condition, but it was also promising, as the surgery had a 70% success rate.  I was actually pretty hopeful, all things considered - social media boards and support groups raved about the procedure and I was pumped.

    My parents, as always, came up to support me.  We spent the night in a hotel room together.  They dropped me off at the hospital the morning of and we shed a tearful goodbye as they couldn't come in with me to the pre-op prep due to COVID restrictions. I had a mental breakdown from being alone and the pain my bladder was in.  Thankfully, the surgery went well, however, and I had no problems!  If you know who I am, this is a rare occurrence.  Third surgery in a pandemic down and I was free to go home.

    The recovery process was brutal, so I'll spare you the gory details, but I will go on this rant.  What I will say is this - due to my IC, I have chronic pain and need opioids occasionally to manage it.  The opioid crisis has done nothing but harm chronic pain patients.  Because I have an outstanding prescription for my chronic pain, I have not been able to fill pain medicine prescriptions for my surgeries.  It is awful.  I have had a bad experience with pain medication in the past, which I am sure you are aware of as I have opened up about it.  Thankfully, that allowed me to have no problems with this medication.  However, when I have surgeries now, which, I know I will need to unfortunately undergo for the rest of my life, as I tend to need emergency ones occasionally (current lifetime surgery count: 14), I will struggle to obtain the necessary medication to deal with it because I have a standing prescription. It's unimaginable the pain I had to go through with my bladder surgery and then the GPOEM.  The GPOEM, thankfully, was not as bad, but I can't begin to explain how horrific the bladder surgery was.  This is something that needs to be remedied with our healthcare system and with that I will get off my soapbox.

    I had a follow-up appointment with my Emory doctor, and, unfortunately, my GPOEM surgery failed.  I'm still having to skip the occasional meal, I'm taking my regular nausea medication on the daily and I've spent some unfortunate nights on the bedroom/bathroom floor.  My surgeon was incredibly apologetic and empathetic, saying how incredibly sorry he was it did not work and how he truly wanted something to work for me.  I told him it was fine and I would do it again a thousand times over.  I had read nothing but amazing things for gastroparesis patients with this surgery and I 100% had to give it a shot.  I would encourage any gastroparesis patient to have this surgery. His next suggestion was a gastric pacemaker operation.  This is essentially where he would install a pacemaker into my stomach, similar to a heart pacemaker, that would remind my stomach to pump and empty; it's something to consider, but not what I want to think about right now.  I've had 4 operations this year, and to be honest, I'm exhausted.  I've been dealing with my stomach issues my entire life, and right now, my main priority is my bladder and trying to cope with its pain.

                                                                   trying to recover with a toddler

    Which brings me to the next issue - another hydrodistention surgery.  My urologist has suggested performing the operation again but injecting steroids into my bladder this time to see if it will help control my pain.  To be honest, I'm willing to give this a shot.  As difficult as the recovery was last time and despite the fact that it didn't help, if the steroids may help relieve it, I'd try it; the problem is, I don't know if I could get through the recovery without any medication to relieve the pain, because last time, I felt like dying.  It's a lot of days to spend in my back bedroom, crying, not seeing my son, wondering when the end will come, feeling less than human, all for a procedure that may or may not work. The payoff could be huge, but it also could be ineffective.  Do I want to sacrifice that time with my family?  This is where that opioid crisis comes in again and I think back to how horrible I feel when I recover from procedures and start doubting my worth as a wife, mother and friend at that time.

    There are a lot of factors to consider and many things on my plate.  On the bright side, I have a great team of doctors on my side. I will say that I've started a new job as an academic advisor in the Criminal Justice studies program and I am loving it.  The students I work with are amazing and the faculty are great.  I have never felt so in my element, being able to talk about past coursework I've taken and my prior experience as a law enforcement officer.  I know what I'm talking about and being able to relate to the students is beyond amazing.  These kids want to enter the Criminal Justice field with truly altruistic intent and it is incredible to witness.  I love waking up to start the work day and it is such a wonderful feeling.

    My baby boy is no longer a baby and while I miss those days where he was so tiny it is so inspiring to watch him grow into himself and see his personality blossom.  He is quite the wild one and I can already tell he will be a social butterfly with absolutely no filter (the latter of which he is going to get from me).  He is a dancing queen and I am raising him on all the right music.  Being a parent is the best blessing of my entire life and every day I cannot believe I get to be this special little kid's mother (although when the tantrums start, sometimes I debate that 😆 - only kidding).  He and my family make every day worth living.

Currently listening to "Everything is Alright" by Motion City Soundtrack