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

Here's to Hoping

           
           Here I am, writing to you in the middle of flare because I failed to notice "spices" included in the ingredients for a bag of chips (seriously, I usually meticulously check those things), doing a quick check-in before D-Day occurs for me this week.  Before I go into those details, let me backtrack to a few positive events that have occurred since my last post.
            I have been unable to have a real vacation in several years.  Every time we have tried to book one, a family member has passed away or I have landed in the hospital (yes, this has seriously occurred on about 6 occasions).  I also do not have the opportunity to take one either, due to the fact that I never have any leave available, as it is always exhausted for surgeries and hospital stays, and with all of my medical bills, it’s often not fiscally possible either.  Despite the leave and financial situation, my husband and I planned for me to take an unpaid leave trip to Colorado to celebrate our 5 year anniversary in May.  COVID hit, of course, and we were unable to take that trip (we are still planning on doing this, however.  I want to go out west and see what the lack of humidity does for my hair).
            Luckily, my family planned a cabin getaway for the week of the fourth where we could stay secluded (COVID-safe) and just have a change of scenery where we were all together.  This involved me, my husband, Jackson, my two step-sons, Cole and Connor, and my sister and her husband, Jamie.  It was an incredible time.  I have to say, Cole and Connor taught me so much about how to be a mother and I love those boys with all my heart.  It makes me so unbelievably happy to see how my parents have fully embraced them and how they’ve truly become a part of the Burke clan from day 1.  We had a great time all together and I have seen Connor become, quite possibly, the most competitive corn hole player on the planet (look for him on ESPN one day – I see those competitions played repeatedly lately). 
            I had two pain-free days after a particularly rough June. Thursday and Friday were amazing.  We went on a hike and got to enjoy the lake, even including a rock slide (minus Logan and Cole – calling you both out!).  I had so much fun enjoying quality time with my family, staying up late playing games, listening to good music, and laughing so hard I had tears in my eyes.  I brought my own food of course, and while I missed out indulging on the tasty dips, desserts and dinners that everyone else ate, I still had the best time.  I have found I can enjoy my bland food every now and then and excites me when I do.  I just have to dress it up a bit and be VERY careful when I eat greens as it does not balance well with my ostomy and gastroparesis diet.

*pictured spring mix in olive oil and feta with chicken thighs in parsley and basil with "ranch" (aka cottage cheese with basil, dill and parsley (my only approved spices)
            July 4^th, I decided to throw caution to the wind and indulge a bit.  We wanted to play a drinking game (Ring of Fire) with my parents and there was no way I wanted to miss out.  I was already starting to hurt the morning of Saturday because it had been two days since I had my last bladder injection, but there was no way I was missing out on playing Ring of Fire with everyone else.  While it sounds excessive that I need two injections a week, I can always tell when the injections start to wear off on or after day two as the pain quickly begins to return.  By that night, I was already in tears.  I stayed up all night crying and struggled to even pack the next morning because I was hurting too much to move.  Thank God I had an injection scheduled for that Monday morning, because I was unsure how I was going to keep making it.
            I had an appointment scheduled with my urologist Tuesday regarding the insane level of pain I’m having to deal with on a daily basis.  My diet can’t possibly get any cleaner, I’m taking the proper medications, but nothing seems to make it improve.  Her next suggestion was the hydrodistention surgery, which is something I have consistently said I don’t want.  However, I have finally caved.  I am having it this Friday, July 17^th.  She advised it could send me into worse pain, it could cause relief; it could help for 2 days, it could help for 2 months, it could not help at all, or it could make things worse.  It’s a huge gamble.  For those it helps, she repeats the surgery every few months and injects steroids into the bladder to try to treat it.  She wanted me to switch up some medication and to continue to speak with my primary care physician regarding those.  Again, I can’t tell you enough how much I adore my primary care physician and his entire team – they are truly the best and I am SO grateful I have him as my physician.
            The same day, I had a virtual appointment with my Emory doctor regarding the GPOEM surgery to treat my gastroparesis.  This surgery is done endoscopically, so I won’t need to be cut open (finally!).  It is done on a Thursday, involves an overnight hospital stay and I’ll be right back to work on Monday.  There is a high success rate of this in regards to gastroparesis patients, so I am very optimistic about this procedure.  I will be having it on August 6^th (perfect timing in regards to my job).  I’m not nervous about this at all, actually.  I’m very optimistic; it’s just odd that I haven’t had time to think about my GP while having to deal with the bladder issues.  The bladder problems have taken a front seat due to the pain and I’ve just been managing the GP with medication and eating small meals/less frequently.
            So, I ask for your prayers on Friday as I go through the hydrodistention.  At the very least, I hope it does not make things worse.  I’m looking for anything to help at this point, but terrified for a procedure to set me back any further. 
            I have gotten a little better at talking to God, but still not talking to him about myself.  I just can’t get there.  Oddly, my grandmother dying helped me begin to talk to him again.  Her faith was so strong, and you would think that her dying would make me angrier, but it gave me reason to reach out to him again.  Just not quite there in asking for his help for me from myself.
            In the meantime, I’m thankful for every good day and the loved ones in my life.

Here I Am Alive

           30 years old.  My first thought about turning thirty was that maybe doctors will finally stop saying “you’re too young to have had all of these problems.” I’ve officially hit the age where my medical history is now acceptable vs. the era of the 20s, where no one that young should have endured what I’ve gone through.
            If I added up the sum of all my experiences of the last 30 years, I feel as if I could write a book.  I’ve been incredibly blessed, but I’ve also been inarguably cursed, and year 29 has been the toughest.  To celebrate this new decade, we had a low-key get together at my sister’s home, with her brother-in-law, my stepson Connor, Jackson and my husband.  While they (with the exception of Connor and Jackson, c’mon, I’m not that cool of a mom) were able to day-drink all day with their Trulys and Bud Lights, I could not. My food was prepared differently and I was unable to enjoy my sister’s famous pineapple casserole. I indulged with two mixed drinks (Vodka and tonic water are the “safest” IC alcoholic beverages) and cake with artificial coloring.  This, of course, did not come without a punishment.

            I woke up in the middle of the night in some of the worst pain of my life, barely able to move.  The day following was horrific, and while I wanted to simply enjoy one day to pretend I was normal and make Ben’s Father’s Day special, here I was again with my illness reminding me that this was not something that would be possible for me.

            30 years old is young - it means I have a lifetime ahead of me that I still have yet to experience.  I completely broke down that morning, terrified for the years ahead.  I have so much life left to live and I simply do not know how to enjoy my future years with the health conditions that I have.  I live in pain every single day.  There is not one day I wake up without it.  Since January, I have had a total of 9 days where I was operating without some type of pain.  It ranges from mild to severe/debilitating - and who knows when a flare-up will occur.  It is scary to realize that I have so many years left to live with this crippling pain every day of my life.  It makes it difficult for me to be a wife, a mother, a friend, a person.  It’s hard to enjoy even the simplest of activities when inside your body is screaming at you.  

            On Father’s Day, on Ben’s day, I broke down to him, trying to reconcile this person and condition that I have with who I want to be.  He gifted me with an IC cookbook and airpods that I’d been wanting just to cheer me up.  He’s become a pro now at shopping in the grocery store for ingredients that work for me and are specific to the IC diet.  He knows what I must avoid and what special items I am able to eat.  He has made me homemade jelly, since I can’t tolerate any jam and even made me IC-safe ranch (lord knows I’ve been missing those condiments).

            My first act on my 30th birthday was a trip to the urologist to get my bladder injection which was absolutely needed.  My nurse (who I’ve seen twice a week since April) cheerily asked me how my birthday weekend went and how I was feeling today.  I immediately burst into tears, once again trying to figure out how I can live with this every day for the rest of my life.  God bless her soul, she really is an angel (pumping your bladder full of meds twice a week can make you get to know a person) and listened to me.  I’m sure she didn’t expect the response I gave her, but she was entirely empathetic and wanted me to see my urologist sooner to see if there was anything else at all we could do to help.

            There is a procedure called a hydrodistention that’s a possibility, but it’s something I don’t want.  It’s an actual surgery on my bladder that may not guarantee relief, and even if it does, the range of relief can go from a couple of weeks to a few months, and then you have to repeat the process again.  Needless to say, I have PTSD from my ablation and don’t want to undergo any unnecessary surgery unless I have a guarantee of relief that will last.  I’ve researched the procedures and have seen so many horror stories online of patients like me who underwent this surgery and wound up being in more pain than before.  This frightens me and it’s not something I want to risk.

            On the plus side, my gastroparesis is currently in remission.  I go through these remission phases every now and then and when I do, I am grateful.  I’m still eating small meals as not to aggravate anything and there are times where I skip meals because I’m still full from the previous one, but so far, my stomach has been operating at the ideal level for me.  I know that I need to have the GPOEM surgery before the year’s end to treat it, but I am still so terrified to do anything at this point.  I finally took the step last week to speak with the surgeon who performs the surgery to begin the process of scheduling this procedure.

            I am beyond blessed to have a phenomenal primary care doctor that truly has my best interests at heart and has assisted me in managing my pain, mental health and various other conditions.  I could not explain the depth of gratitude I have for this doctor and his practice.  I am also incredibly thankful for the urology group I’m with that continues to put up with me week after week, trying to treat me the best way possible.

While Instagram and Facebook can paint a pretty picture of how things appear, I hide all the days that I’m really struggling.  No one wants to see all the dark parts and I respect that.  I appreciate the good days, where my pain is mild and I am able to be the mom and wife that I want to be.  I appreciate my support system that continues to keep me going on even the worst days and respects that some activities and basic day-to-day responsibilities are a bit more difficult for me.  I could not do anything without the ones I love supporting me and I love you all so much. 

Here’s to 30 years young and hoping that the future brings health. For now, here I am alive.

*currently listening to "Here I Am Alive" by Yellowcard

Frail State of Mind

I’ve debated returning to blogging for quite some time now.  It helps me process things and therefore, here I am again.  I refrained from posting anything during my pregnancy because, let’s be honest, no one wanted to hear about that nightmare - but I think we can all agree that the most darling little baby boy was worth every single hospital second.  Shockingly, despite the medical turmoil that has been my 29 years, pandemic aside, 2020 has been my toughest year to date (yes, this includes the 2017 three-month hospital hotel ostomy chronicles).  If I had to describe it through a song, it would undoubtedly be the 1975’s “Frail State of Mind” (now go give it a listen, proceeded by every other piece of lyrical genius they’ve produced).  Now that we’re rounding out April I feel that I’ve finally had the time to mentally digest, understand and actually talk about what has been the horror of the past 4 months.

I’ll start by saying this begins with “female” issues, so guys, if you’re here and this makes you uncomfortable, drop the scroll.  Everyone is familiar with my gastrointestinal anthology, but luckily I was blessed to have no issues with the gynecological arena.  Prior to having Jackson, I didn’t have a period for 5 years (no complaints out of me here).  Due to my multiple surgeries and health issues, it was just assumed that everything was whacked out there as well and to consider myself thankful that I didn’t have a monthly visitor.  After I had Jackson, however, I never really stopped bleeding.  My periods lasted between 15-30 days every 2 weeks and were incredibly painful.  After several months with no way to regulate it, there was only one way to remedy this - an endometrial ablation.  A simple, fast, outpatient procedure.  Burn the lining of the uterus, your periods go away, you can go back to work 2 days later.  No one has any problems, right?

I can say with 100% confidence that this procedure was by far the worst thing (medically) that has ever happened to me.

4 days after the procedure, I developed a strong, debilitating pelvic pain that continued to get worse.  My OB did an ultrasound and thought everything appeared fine.  Two weeks later, I was in the ER as a result of the pain.  I was quickly dismissed after a CT scan that the technician said was “unremarkable.”  I was unable to work, unable to take care of my son, completely incapable of functioning as a normal human being and spiraling into depression, going back on antidepressants for the first time in over a year.  Three weeks later, I was back in my OB’s office, begging for an answer - something was clearly wrong and I just wanted it fixed.  She referred me to a high-risk OBGYN who reviewed my CT scan once more and said the problem was my uterus and it had to go; finally, someone was listening.

I finally saw a light at the end of the tunnel, despite how badly I was hurting.  A week later, things would come shattering down, as I experienced a bowel obstruction.  Let me state for the record that a bowel obstruction is one of the single most painful events that anyone can experience (and I feel like I’ve been through it all at this point).  Off to the hospital again, I was admitted, put on an NG tube (and complimented by the nurse who said she had never had a patient take an NG tube as well as I had - you just get used to those horrible things and are ready for relief), put into a drug induced coma for the next few days while trying to balance my pelvic and intestinal pain.  Watching each new doctor come in and visit me with that shocked “Wow, you’re only 29 with this medical history?” face and statement come in until I was better. 

For the first time in my life, I stopped talking to God.  I was angry.  I was done.  I had (and frankly, still have) no clue why I had been chosen to undergo such astronomical pain so many times in my life and still be expected to function.  I don’t mean to wallow in self-pity here, but I’ve been through a lot - and I was sick of it.  I quit praying, I stopped asking people to pray for me and I said I was done talking to the man upstairs - this was it, I’d had it.  I was at the lowest point I had ever been in my life, feeling like a complete failure as a mother, wife and overall human being.  The hardest part was mentally grasping that I could not physically be a parent to my child in my current condition and it could not have possibly made me feel worse.  

Two months after my ablation, I had my hysterectomy.  Sure enough, the surgeon discovered what was (what we thought would be the end) the result of the pain - a fibroid had exploded in my uterus, causing my uterus to rot inside of my body.  Doesn’t that make you feel attractive?  Surgery pain is surgery pain, it’ll be over soon right? 

9 days post op, I woke up feeling amazing, as if I didn’t even have surgery.  By that afternoon, however, my pelvic pain had returned.  The next day, I was bedridden again.  Down I went, in one of the lowest points in my life.  My father (always the man, my best friend) came up to help out with me as my husband was taking care of our son and balancing working from home.  After another CT scan that did not show anything apparently wrong, my surgeon was stumped and said I would have to wait it out.  I couldn’t do that - this did not make sense.  I was crying non-stop from the pain and could barely walk.  Looking at a diagram of the body, I *quite literally*  just saw where the bladder was located and asked if that could potentially be the problem.  My surgeon said it was worth a shot and to follow up with a urologist that I failed to follow-up with before.

Shout-out to Athens Area Urology for getting me in for a cystoscopy (camera shot up your bladder) next-day and a consultation.  After this appointment, I received some good/bad news.

The good: I finally learned what was causing this all encompassing, debilitating pain.

The bad: I have interstitial cystitis.

Out of all of my conditions and health problems, I have to say this is my least favorite one.  It appears the ablation also permanently damaged my bladder and I, yet again, have another chronic condition to add to the list. The amount of pain this causes is astronomical - when you go through a flare, you cannot function.  I was so grateful to have an answer, but mentally did not know how to cope with the news.  I have to thank my husband, my parents and my sister for, quite literally, saving my life after finding this out.

I’m now on an army of new medicines and on an incredibly restrictive diet to help control flares.  I thought my diet was limited before, but just take a google at IC diet - think you can have anything remotely flavorful?  WRONG.  I’ve had to give up coffee and wine, and if you know me, my bloodstream is 50% Starbucks and 50% Pinot Grigio, so this has been the biggest struggle.  I will be getting bladder injections 1-2x weekly for the rest of my life to help treat the pain and control flares, and let me tell you - a bladder injection is truly just as glamorous as it sounds.  I’m on new mental health meds to help my brain cope with this news, because it’s been tough and I’ve struggled like I’ve never struggled before.

My biggest concern in all of this has been - what kind of mother will I be?  What kind of mother will all of this make me?  Sometimes too much movement triggers even worse pain.  Will I be the mom that can throw a basketball with her son, or will I have to sit on the sidelines, or worse, stay home and miss sporting events, school functions and the like because I’m too sick.  How many more hospitalizations and surgeries do I have in my future?  I’ve recently been approved for a new surgery to treat my gastroparesis - it’s supposed to be routine, but needless to say, I’ve developed a bit of PTSD from “routine” procedures.   How much of Jackson’s life will I miss because of my health?

Despite everything, despite the lowest of my low, I know I have a sweet, precious little boy that I have to live for.  I cannot imagine missing a single second of his life or being there for him in whatever capacity I’m able to be there.  I have never experienced the type of love that has come from my love for him, and whatever happens to me, I have to continue to fight for him.  Mentally - this takes a lot of work.  It takes a lot of support from those that care the most about me and who have been here for me through the worst of it (I’m not good when I’m bad) and some strength on my part as well.  

As for the God part, I’m working on it.  I’ve started praying for others, because the world is a scary place full of people I care about.  I hope that it’s all working.   As for myself, I haven’t said a prayer yet - maybe we’ll get there one day, but I’m still mending that relationship.  

For now, I’m grateful that I’m healing this frail state of mind.