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...